Redheaded Bald Chic

A Beautiful Soul Leads to a Purpose of Advocacy

2011-11-10T23:18:00.001-05:00

Four years ago on an ordinary hot summer July day I sat in a doctor’s office when three words changed my life. “You have cancer” I actually don’t remember the exact words that were said to me, it could have been “the biopsy results are malignant” or “we found a tumor”. The exact words do not matter, the gist of it is in a few minutes my world was turned upside down. I have heard it described as the induction to a club that you never wanted to join. As I look back, memories of the first 6 months are surrounded by a fog. I struggled with balancing treatment, work and just trying to get through each day one moment at a time. I kept my head down when I was at treatment and did not engage with anyone else that had cancer. One day, I realized I could not do it alone. Even though I had a strong circle of supportive friends and family, I needed to talk to someone that could relate. I found a local support group for young adults, joined several online communities and slowly started to learn that I was not alone.

Fast forward a year and it looked as though I was losing my battle with cancer. Treatment was not working and I was told I only had a few months two live. As you can imagine this was news that was extremely hard to cope with, but with the support of my friends, family and cancer friends I came to terms with my prognosis and embraced life.

As it turns out the prognosis was wrong. No one knows why I am still alive and even though I am not cured and still have daily health struggles, I am finding ways to live a meaningful life. During the time after my expected “expiration date” I have become very active in what I call “the cancer world”. I have attending several retreats; become a member of several organizations that provide support to cancer survivors and transitioned from a cancer patient to a cancer survivor and advocate to bring awareness to the issues that affect cancer survivors.

In the last three years, I have met hundreds of cancer survivors and have formed many friendships. Cancer survivors share a special bond and we often form strong relationships over a short period of time. Some of these friends I have met in person, others I only know online. One of the consequences of becoming friends with people with a life threatening illness is the likelihood of your friends dying is increased exponentially.

Over the last several years, I have known over 30 people that have passed away due to cancer. When I thought I only had a few months to live, I struggled with whether I should continue to attend events where I would meet new people and become friends. I was afraid that I was inviting someone into my life and asking them to watch me die. When I brought this concern up to some of my friends, I was told that is the risk we take when we meet other survivors. Every time I learn about the death of another person with cancer, I experience a type of survivor’s guilt. Why am I still alive when this other person is not?

Beautiful Sage

This summer I attended a camp for young adult survivors. I spent a week with 9 incredible survivors at an adventure camp learning how to white water kayak and triumphing over a new type of physical and mental challenge. One of the first fellow campers I met was a vibrant young woman from California nicknamed Sage. I was immediately struck by her larger than life personality. Throughout the week I was lucky to spend time with her and found a kindred spirit. Shortly after camp, I learned that she had a recurrence and sadly her prognosis was not good. This past Saturday, I received a phone call from her mother with the news that Sage was in a coma and had only a few days to live. This news was not unexpected but it was devastating. For several weeks I knew in my heart that it was a matter of time until the cancer would overtake Sage’s body and her time on earth was short. Yesterday morning, I received another call from her mother letting me know that Sage had peacefully passed away the previous morning.

I cannot begin to adequately describe the many wonderful qualities that Sage possessed. I do not have one memory of her at camp when she was not smiling. I wholeheartedly believe that everyone that had the honor to meet her is better for it. She has a spirit that touches everyone is a unique way and I for one am blessed to have met her. One of our fellow campers described Sage as the type of person the world needs more of. I may never see Sage in this life, but her spirit will always be with all that loved her.

Earthbound and Sage

When I decided to stop treatment, I dealt with the prognosis of an early death. I have spent the last couple of years waiting for my health to deteriorate and for eventual death to come. For some reason, I am still alive. No medical reason has been determined why I’ve been blessed with more time. For days I have been grappling with why my life has been spared and a beautiful, young woman with so much to give to the world was not. Why does it feel as though the people the world needs most are the ones that leave us all too soon? I have come up with only one answer. I believe I am still here to make sure the world does not forget all the people like Sage; to ensure that all the cancer survivors whose life ended prematurely have not died in vain.

Snow Surfing in July

Currently I am involved with an organization called I’m Too Young for This, also known as Stupid Cancer. It is one of the leading support organizations for those affected by young adult cancer. I am part of a team of dedicated volunteers that are planning the 5^th Annual OMG Cancer Summit for 500 young adult patients & survivors, long-term childhood survivors, caregivers & supporters, parents, siblings & friends, oncology social workers and nurses. The summit will be held in Las Vegas in March 2012. In the past couple of weeks I have been dealing with several medical issues and I have been finding it difficult balancing caring for myself and finding the time needed to help plan for this event. While my struggles are not behind me, I am more committed than ever to make the OMG a successful and meaningful event. As of today, I am going to dedicate every moment I spend working on the summit in Sage’s memory and for all of the millions of cancer survivors that are no longer with us. To learn more about the OMG Summit please go to http://omgsummit.org/2012/.

I am currently fundraising for three organizations that have provided invaluable support throughout my own Cancer journey. If you are as passionate as I am about supporting the lives of those affected by this horrible disease, please consider making a donation to one of these incredible organizations.

Stupid Cancer / I’m Too Young for This http://stupidcancer.com/

Support the efforts of Stupid cancer in ensuring that young adult survivors get the chance to attend the OMG Summit and participate in a life-affirming weekend of support, education, community and hope. http://www.crowdrise.com/omg2012/fundraiser/alliward

First Descents http://firstdescents.org/

Offers young adult cancer fighters and survivors (ages 18 to 39) a free outdoor adventure experience designed to enable them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same.

http://teamfd.firstdescents.org/2011/fd/Lolli/Alli/

Solo Survivors http://www.solosurvivors.org
A new organization whose mission is to provide tools, resources, support, and connection to navigate the cancer journey as a single person. This is not a dating service, but rather a place to feel connected to a larger community of singles who are facing similar challenges for support, sharing and advice.
http://www.crowdrise.com/Solo-Survivors/fundraiser/alliward

Words That Define Us

2011-10-11T02:06:00.002-04:00

Remember when you go to a job interview and they ask you to describe yourself in three words? I even used that question with a twist when I was pursuing online dating. In a business interview, I would describe myself as a team player, innovative, & dedicated. All the words that were appropriate for the situation, these words would all be true in the work environment, but in the other part of my life I had completely different words that others and I would use to describe myself. My favorites are free spirit, smiley, lovable, sunny, care free, compassionate, care-taker, independent, confident, strong-willed, flower child, “yogurt or crunchy” and these are just to name a few.

Then one day four years ago a new word was introduced into my vocabulary. And with that word a new set of words or phrases somehow replaced all the others. I went from being described with a multitude of adjectives to being a cancer patient, survivor, fighter or victim. It didn’t really matter which word was used because the word that made the difference was Cancer. It did not really happen overnight, but it seemed that cancer did take over my world.

After two years of constant difficult treatment that seemed to not only make no difference to the cancer, but egg it on to take over my body, the doctors added another word to my descriptor – Terminal. In a few short years, I went from the care-free hippie to the terminal cancer patient. After a while I chose to refer to myself as an end-stage cancer survivor, but that is just semantics.

When the doctors told me treatment was not working and I had only a matter of months to live, life took on a whole new meaning and I was determined to live life to its fullest and for a while I did, but I was also preparing to die and to understand what that meant emotionally, physically, logistically and spiritually not only for me, but for my loved ones.

An amazing thing happened though. I did not die. I am over two years past my “expiration date”. There are really no concrete reasons for why I am still alive. I was not miraculously healed. I still have cancer and my body is a mess. These days I look pretty good, but I joke that people should look under the hood. As wonderful as it that I am still alive, it was not part of the plan. I had accepted life’s terms that I would die way too young and I was trying to make sense of the loss and find the resolve to live life for each day. However, while I was focusing on cherishing each day I was also waiting to die.

I’m not saying in the past two years that I did not have days that I truly felt alive, but they were the exception and not the norm. Basically, I was coasting along in my unfulfilling life.

I wrote in my last post about an experience I had this summer that produced new adjectives that people have said about me that include: risk taker, inspirational, strong, courageous, kind, empowering, determined. The words that I choose to use to describe myself are: inspired, humbled, happy and optimistic and thriving. If I have to have a word associated with having cancer, I choose cancer thrivor.

I think from time to time we should all look at the words that we use to describe us and decide if we like them. One thing I have learned from this experience is that life changes every day. It changes without our permission, but we also have the opportunity to craft and define the changes we want to make. I realize that we cannot change everything. I cannot change that I have cancer or the fact that I am suffering a major infection as a result of an oral surgery I had two months ago. I may be looking at two more surgeries to correct it and at this point that is up to the effectiveness of the medication and the judgment of medical professionals. What I can change is how I choose to let this affect me and what I intend to do about it. I know the next few months are going to be difficult, but I am putting plans into action to make them easier and most importantly for the first time in years, I am looking at the future and making plans for next spring and summer.

What are some of the words that you feel describe you? What are the ones you want to change and if you can use any three words to describe yourself, what would they be?

First Descents: Life Challenges, Lessons Learned

2011-09-22T01:59:00.244-04:00

As some of you know from one of my previous post that this summer I had the opportunity to attend a week-long adventure camp sponsored by First Descents.

Ever since I have returned I've wanted to write something about my time at FD and the impact it made on me. I have started writing many times and the words never came. The other night however, I couldn't sleep and as I was lying in bed, suddenly I knew what I wanted to say. I grabbed my crutches and hobbled across my room and got my laptop. As soon I started typing, the words began to flow from inside my heart, my soul, my spirit, through my fingers and then onto the page.

I did not have a predetermined list of things I wanted to say or have any idea how it would start, what parts I would include or how long it would end of up being. I have to admit it is more like a term paper than a book report, but it is from the heart. I know that I was meant to attend that particular kayaking camp this summer, just as I was meant to write these words about my experience. I invite you to click on this link and read "Reflections From On the Water".

I hope that by reading these word you will be able to get a glint at what this experience has done for me and for those that know me personally, may be able to see the changes that has happened within me and see the differences in the Alli you know from before and after camp.

In my recap of camp (see above link), I mention a series of pictures of my time on the water. I have included them below.

First day at FD camp. Getting ready for my first roll in a kayak on Bowman Lake. Really freaked out. It was such a mind game. One of the biggest challenges I have ever had. Of course, that was before we got on the river!

Start of the action pictures. I'm getting ready to start the roll. Scared to death and Pleasa has to talk me down from panicking.

Action shot going into the roll. It's cold!!!

Can you say "Most uncomfortable position ever"?

Almost done.......

Wow - Look at my expression - such a relief I can breathe again.

All smiles now, but thank god that is done! It seemed like it took forever, but in reality was only a few seconds.

First wet exit - was not as bad I thought, but still scary while going through it. Thanks so much to my awesome guide Pleasa.

First Descents camp is free to all young adult survivors and they had approx 25 camps in 2011 It costs about $1,000 to send one young adult with cancer to camp for one week. Additionally, I received a travel scholarship, so because of generous donations I had one of the best weeks of my life and all it cost me was my willingness to step up to the challenge. Will you help me raise $1,000 to help another young adult with cancer have what could be the experience of their lifetime?

It is easy to donate, just click on the following link to access my FD Fundraising Page. Even a small donation of $25 goes a long way to making a difference in the life of a young adult survivor.

http://teamfd.firstdescents.org/2011/fd/Lolli/Alli/

The effects of being in nature

2011-08-07T21:26:00.000-04:00

As many of you know I love the outdoors especially hiking, camping and anything that has to do with water and mountains. Since my diagnosis, I have spent little time doing the things I love. During this past year, I have been blessed to have several opportunities to be experience the activities I love so much. I wrote recently about the trip to Montana with an organization called First Descents, but I never would have gone on that trip if it wasn't for my experience with on the Colorado River last August. I wrote a blog about this amazing and challenging trip in a previous post. Lessons Learned from Colorado

The canoe and camping trip was sponsored by a new organization called Solo Survivors. Solo Survivors’ mission is to provide support for single people who are dealing with cancer. This is not a dating service, but rather a place to feel connected to a larger community of singles who are facing similar challenges for support, sharing and advice. I have been very lucky to be working with this group and have gained much support from its members.

At the end of this month Solo Survivors is hosting its 2nd annual 3-day canoeing and camping trip on the Colorado River. Since many single cancer survivors have financial constraints, the cost to participants is only $50. This fee only covers a small percent of the total trip costs. Will you help me in supporting this year’s trip so that others may have the same opportunity that I did?

There are several ways to help:

Tax-Deductible Donation
Gift Cards to Costco or Whole Foods for food
Gas Cards for transportation
Hotel Points for out of town participants to stay before and/or after the trip

To make a tax-deductible donation go to: http://www.crowdrise.com/solosurvivors/. Even a $10 or $25 dollar donation will make a big difference. I am willing to give up my Starbucks addiction for a week, can you?

For any other donations, please contact me at solosurvivors@gmail.com or sonsalli@comcast.net

If you are a single cancer survivor and you would like to attend this trip, check out our event page on facebook http://www.facebook.com/event.php?eid=112063782208468 or the registration page http://canoeconnection2011.eventbrite.com/ for more information.

Thank you for your support.

I'm still here!!!!

2011-07-22T15:08:00.000-04:00

Hi everyone, I know that I have not blogged in months. I don’t have a lot of time to write much of an update just now, but I wanted to let all of you know that I am still here and fighting strong.

It was a rough spring and a difficult start to the summer, but July was freaking awesome.

I have lots to tell you all. Especially about my experiences at the ovarian survivors retreat at Camp Mak-A-Dream in May and an awesome trip last week with First Descents at a young adult survivor adventure camp. I was in Montana twice in 3 months and the second time I was white water kayaking in Glacier National Park and had a snowball fight on July 13th!!!!!

Can anyone believe any of this happened? I was not even supposed to be alive today and to think that not only am I alive, but learning to live with my physical troubles and thriving in spirit. Can’t wait to tell you all about it, but am about to go away to the beach with the whole family (parents, 2 sisters & their husbands and 4 nephews (two 4 y/o and two 6 y/o) and life is crazy busy.

Since I don’t have time to do justice in describing my travels, I leave you with a couple pictures from the trips. I promise much more to come and will definitely writing more soon.

Ovarian Survivors Retreat At Camp Mak-A-Dream, May 12-16

View from Camp Mak-A-Dream

Wicked Queen at Halloween Night on Friday the 13th!

First Descents Camp in Glacier National Park, July 10-16th

Best week of my life!!!!

First Descents - 1st Day in Kayaks on Bowman Lake

In all my kayak gear, but scared to get on the water

Just did my first roll - really freaked out!!!

My travel buddy "Grid" ready for his first day in the kayak!

Sun Road through Glacier National Park

Wrote my "camp name" in the snow wall at Glacier

Me (aka "Lolli") and "Earth Bound" on the snow field at Glacier

Last day at camp - Hanging out with "Pansy". Oh, how I miss her!

With my faithful kayaking guide "Konvict". Whom without I could not have been on the water all 5 days!!!

That's all for now now. Have more pictures and videos to come later.

Name That Fish

2011-03-12T12:28:00.000-05:00

Thought I would post something lighthearted for today.

I'm getting new fish today and need name suggestions. In the past I have had Horton, Thing one & Thing two. The next set was Eenie, Meenie, Miney & Moe. I am probably getting 4 new fish. Some ideas in my head are Alpha, Omega, Beta & Phi or Red Fish, Blue Fish, One Fish, Two Fish. Any suggestions?

Eenie, Meenie, Miney & Moe (

Miney is hiding behind Moe)

Loss of a home and losing a piece of myself

2011-03-11T03:53:00.001-05:00

Once again I find myself wide awake at 2am. I have done all the usually tricks to help me get to sleep, but tonight, I think there is only one thing that will work. I think the only hope I have of getting some decent sleep is to write about how I am feeling.

Have you ever noticed that there are a few moments of quiet that happens right as you fall asleep? It is the time between the chaos of life and drifting off into the mindless world of sleep. When all the activity of the day falls away, there are just a few moments of peace and quiet that leads you into wonderful slumber. For days I have been laying in bed trying to avoid those moments. For me this time is not a good quiet and I find little peace. This is the quiet that brings on the tears and emotions that I have been stuffing away all day. I have been doing everything possible to avoid this time, putting on movies and watching till I fall asleep, reading until I can’t keep my eyes open. Anything so that at some point exhaustion takes over and I do not have to feel anything. But even with these evasions I have cried myself to sleep almost every night for the past two weeks.

The problems that is causing these tears is not a new problem, in fact the real problem may be that I have been dealing with this for so long and it is taking up energy I don’t have.

As most of you know I moved out of my condo in Nov 2009 and moved in with my parents. I wrote a blog on the eve of moving out titled, "Leaving Home and Leaving a Part of Myself”. I was taking some of my stuff, but the majority of it stayed to be sorted through at a later date. At the time I did feel as though I was leaving a part of me behind, but I did not feel as though I was losing that stuff. It would be there when I needed it.

Last spring we began that sorting. We started going through all my possessions and figuring out what we were going to do with all it. In preparation for putting the condo on the market, we cleaned out a lot of the personal stuff and just left some of the furniture, decorations and such that can give the buyer an impression of what it would be like to live there.

For me it meant packing up a lot of my mementos, pictures, items I have collected over the years. These treasures have now been relegated to a box in my parent’s basement or attic.
Last November I received an offer on the condo, signed the contracts and expected the house to settle by the end of 2010. My parents and I got very busy packing up everything that remained in the house. It seemed like it all went into four categories. 1. Bring it into my parent’s house and incorporate it in to my little room or find a specific role for it in the other rooms of the house. 2. Offer the rest of my family any items they would like to have. 3. Give away anything the family does not want to friends. 4. Designate everything else that is left for a garage sale.

I can’t even begin to tell you how hard that process was and in fact still is as there are boxes stuffed here and there all over the house that need to be gone through.

As hard as that all is, it is not what is keeping me up at night right now. The settlement set for December 2010 was delayed thirty days. At the end of that time, I learned that the buyers had some paperwork problem with the sale of their house and since our settlement is contingent on the sale of their home, our settlement was delayed another 30 days. Nothing about the contract process went easy and I did not really expect this part to go easy either, but one can only hope. In the end of February I learned it could be several months before the issue can be straighten out and every month of delay means another month I am responsible for bills that I just don’t have the money to cover. We worked out a deal with the buyers that they can move into the condo prior to settlement and cover the bulk of expenses. There are a couple good things about this including the monthly bills being covered, but I won’t be able to rest easy until all the paperwork is signed.

As I wrote the statement above, I question if that is really true. I want this whole thing to be over so I can move on, but it certainly won’t be the end of it and I doubt that even then I will be able to rest easy.

Two weekends ago, I walked through the condo for what I am pretty sure was the last time. I took the last remaining items, took some pictures, walked through the empty rooms, now void of any of the warmth and happiness it had when I lived there. I closed the door said goodbye and cried. Even now as I write this and remember what it felt like I am crying. On March 1st, three days after I locked the door for the last time, the soon-to-be owners received the keys to the place and it is now essentially their home now. I feel it is important to tell you that I bought that house on February 28, 1997. I owned that house for exactly 14 years. Some may say a circle has come to a close and owning the place for 14 years down to the exact day is symbolic. I find it ironic that I will always remember how I felt when I signed the papers on Feb 28th 1997 and opened the door to my new home and then on that same day 14 years later I will always remember how it felt to lose it. My blog last year was about leaving my house behind and leaving a part of my behind with it, but what I feel now is the loss of a home and the fear that I have lost a part of myself forever. I will never spend another night in my bed or snuggled up in front of the fire. No more meals created in the tiny kitchen, no more hammock time on the back patio, no more digging in the garden and then watching in awe as the flowers made their way through the dark earth to the sun.

That chapter of my life is over and I am devastated. As I lay in bed crying, I imagine these new people in my home with their furniture and their special possessions and I feel utterly and completely lost. I just want to scream. There is no place for me there anymore. It will never again be my home and after some time goes by there will be little traces that I ever lived there. If only these last three years could be a dream and I will wake up in my bed in my beautiful yellow bedroom to the life I had before. But this is not a dream I can wake up from, this is my reality.

I have been trying hard not to show what I am feeling or how much I am hurting. I put a smile on my face when I talk to people and just tell them I am doing fine. I will say or do anything to ward off the pain of all this for just a bit of time. I have even delayed writing this blog, partly because I hate to admit to people when I am hurting, but mostly because I knew that if I started writing about this, my heart would just finally break open and I would not be able to put it together again. I have been trying to deny how much this affected me and writing this has just opened the dam and now all the feelings are ripping through me. I almost can’t see the computer screen due to the number of tears streaming down my face.

Some people might say things like “It is just a house” or “It is just stuff”. I know they mean well and it is just a house and just stuff, but it was MY STUFF and MY HOUSE. I am heartbroken and the little piece inside me that connected who I am with my home and my things has died. When you think about grief, the big things come to mind; death, illness, divorce. I never really thought that I would have to grieve over leaving and selling my house, but I have come to learn that we need allow ourselves to grieve all areas of our lives where there is any type of loss.

The passing of fellow survivor and friend - Bethany Richmond

2011-02-06T01:38:00.002-05:00

I woke up Friday morning with a cold and felt like shit. I bundled up in flannel and sat down at my computer with a cup of tea to "reconnect" with the world. This is my morning ritual no matter what time I actually get up.

As I scrolled through my Facebook and Twitter updates I saw an entry that simply said “Bethany RIP”. I ran those words through my head and thought “no way, this cannot be, there must be a mistake”. But I knew that it was true, it was a reliable source. I clicked on Bethany’s Facebook page and after reading several posts I found a post by her sister that confirmed that Bethany died on Thursday.

I met Bethany in January 2009, almost two years ago to the day. Although we only saw each other a handful of times, we kept in touch and shared our common journey with cancer. Bethany was a vibrant, compassionate, caring young woman that deserved to live a full life instead of dying a few days after her 29th birthday.

The day I was diagnosed I became a card carrying member of the cancer community whether I wanted to join or not. I resisted in the first year, not wanting to befriend other survivors, keeping my distance at treatment and refused to attend support groups. I did not want to be one of “them”, I wanted to be normal. After a year or so, I realized that I needed to talk to others that were having similar experiences. I joined a couple support groups both in person and online. I started virtual visits with my new friends on Planet Cancer and met many other young adult survivors and finally found others who could relate.

My non-cancer friends had done a great job supporting me, but they just did not get it. To be truthful, I did not want them to be completely able to relate, because that meant they would too have cancer. Over the past years I have met fellow survivors at retreats, fundraisers, social events, through other friends and survivors as well as online communities like Planet Cancer, Facebook and Twitter. Some my cancer friends I have never met in person or even talked on the phone, but we know each other virtually. Some I talk to daily, others every couple of months. Some of us stay in touch by reading each others blogs, twitter or Facebook updates and provide and express care through the short posts of the social networking world. I find it amazing that some of my closest friendships in the cancer community were formed from short introductions both in person or comments on discussion boards. I have a broad definition of friendship for these people. I may not see them in my regular life or would not recognize them on the street, but we have shared intimate feelings and experiences with cancer with each other and therefore built a special bond.

After three years of being active in the ‘cancer’ world both as a fellow survivor and advocate I know more people with cancer than without. We all celebrate together the victories like of end of treatment, successful surgeries and mourn of sad moments like treatment, side effects and the ongoing toll cancer takes on our body, mind and spirit. There is a negative of having this wonderful community of fellow travelers and the support we receive. The downside of meeting and being friends with people in the cancer community is the likelihood that you will experience the deaths of several of your friends is exponentially greater. I wonder about that sometimes. Am I opening myself up for more grief and pain than I already experience? Do I want to have more people I care about who are suffering and dying from this disease? Conversely, is it fair to become friends with people when I know that I am terminal?

I do know that each person that I have met on this journey has enriched my life and helped me on my journey and I hope that I have done the same in response.

I am so pissed that cancer has taken one more of the people I love. Cancer sucks. Enough is Enough!!! We need to find a way to stop this deadly disease. I never want to lose another friend, but I know that in my heart I will. Yesterday was World cancer day and I wanted to write this post then, but the words would not come. Today a friend told me that since cancer exists every day, there is no wrong time to express these feelings and support those with cancer. The Stand Up 4 Cancer organization created a space on their website for people to “stand up” together and declare your support. It is not too late. Will you join me in standing up for the end of cancer? http://wcd2011.standup2cancer.org/

It still feels unreal that I will never again be able to talk to Bethany again, to share a meal, exchange experiences and provide and receive support from each other. I will always remember her and how in knowing her she has blessed my life. Heaven has gained a wonderful angel this week. She will be missed.

Below is the post I made on Bethany's Facebook page when I learned of her passing.

Dear Bethany, There are few words that could express how sad I am to hear this news. I valued our friendship; and enjoyed the times we had together and will remember them always. I am comforted to know that you are now in a place of peace and without suffering.

Bethany at the I'm Too Young for This happy hour, August 2009

I'm Still Here

2011-01-28T14:02:00.003-05:00


Finally a good pic Dec 2010

Months have gone by since I last posted to this blog. I think there are so many reasons for this and I will share some of them in future posts. I have a whole list of possible post subjects and I’m committed to posting a least twice a week.

But more importantly I want to tell you what prompted me to write this blog today. Earlier this week a friend sent me an email with a link to “This American Life” radio show. She heard an episode that made her think of me. The episode of the show was called “Slow to React”. As I started reading about the different segments of this episode it became evident to me that it was about people who moved slowly and in many cases it is an insult. I started to wonder what it this could have reminded her of me.

Act 3 of the show was titled “I’m Still Here” It is about a woman that has been living with stage IV breast cancer for 18 years. She talks about a time when your outlook evolves and there comes a time when you wake up and realize that you have not died yet and you have to adjust. It took her 14 years to get comfortable with fact that she is going to be here and how does she live a life after planning to die? What do I do with a life now? She finds she has to argue herself back into life a lot.

There are so many reasons why this radio segment spoke to me. I have been struggling with the fact that I am still alive and since I was busy planning for my death I did not plan for an extended future. Don’t get me wrong, I am very happy that this unexpected time has come about, but I do not know what I am supposed to do with it. I am not cured, my stage IV and terminal status has not changed, and it appears that death is not imminent. I have no idea how much time I do have, so now I ask myself everyday: What am I going to do with my life now? I have many thoughts on how to answer that question so stay tuned to future posts.

In the interview she talks about a breast cancer message board that she is involved in. Each year on her cancerversary she writes an entry on the forum titled “I’m Still Here”. Here are excerpts from her posts from the last two years.

Jan 2010

“I feel like throwing open the window and shouting that to the world, because as of today, I've stayed alive for seventeen years with stage four breast cancer--fifteen years past my predicted expiration date.”

Jan 2011

"I'm writing from India to say that as of today, I've been alive 18 years with Stage 4. If someone had told me then that I'd be in India--or anywhere--18 years down the road, I'd have thought they were deluded or being cruel. As I've mentioned before, there was no hope when I was rediagnosed, and then somehow there was. Just as cancer can take some unexpected bad turns, it can take some unexpectedly good ones too. This computer's going to go down any minute, so I'll end here, but not before saying I wish everyone the most unexpected year, in the best way."

I have not celebrated cancerversaries. I could not get any energy around observing the day my world got spun around and did not want that yearly reminder that I was still fighting the disease and have not had the success story of being cured. Considering that I am now two years past my projected expiration date, I am starting to believe that maybe I do have an event to celebrate – the fact I am still alive. I am now going to start a cancerversary, the celebration of each year I am still here.

So here it is - my shout out to the world. I AM STILL ALIVE, two years after my "death date" and still going. I am like the energizer bunny, my batteries will not run out. They get a little slow at times but keep on beating.

The radio show ended with a song, it was “This Year” by The Mountain Goats. There is a line in the song that says: “I’m going to make it through this year if it kills me” I think that makes a perfectly good motto for 2011. What do you think?

Hit play if you want to hear "This Year", The Mountain Goats

Here is the link to the show mentioned in the post:

http://www.thisamericanlife.org/radio-archives/episode/425/slow-to-react

When you click on Play Episode, Act Three starts at 44:47

Monsters Under the Bed

2010-09-26T03:28:00.000-04:00

Remember back when we were kids and were afraid of the dark? I think there is a time in all of our childhoods where we heard the house creak or wind blow and thought the worst. We would lay in bed waiting for a monster to jump out of the closet or pop up from under the bed. It was a time when we wanted to close our eyes to keep out the bad stuff, but at the same time were too afraid of what would happen when we closed our eyes.

Tonight as I lay in bed trying to fall asleep I found myself thinking about scary things that go bump in the night. I don’t think I was ever afraid of monsters in my closet, but I was sure there was some living in the basement. One of the houses I lived in when I was young had in playroom in the basement. My sisters and I would play downstairs all day without a care, but I was only comfortable down there in the daylight hours. The room only had small windows near the ceiling, but I always knew when it was getting dark outside and would avoid the room at all costs. If I had to go downstairs by myself at night, I would creep down the stairs, turn on every light all while calling out to the monsters or ghosts that took over the basement each night. One night in particular I remember telling them: “It is just me; I am only here to get something. I promise I will be out of your way in a right away.”

I hate to admit it, but I am 38 years old and find myself again afraid of the dark. I do not think I am it is the dark itself that I fear, but of the moments after I turn off the light, the in between time of awareness and dreams that I think of monsters. For the last several years I have had trouble falling asleep. I can be dead on my feet, barely keeping my eyes open and as soon as the lights go out I am wide awake. The monsters have changed forms over the years, but they are still there. Once again it is the scary thoughts that keep me from falling asleep. The thoughts are no longer creatures under the bed or in the closet, but of all the fears of life that I can keep out of my head during the day, but come alive when the room is dark and quiet. It drives me crazy that I have no problem sleeping during the day. In fact, I can be asleep moments after I close my eyes when the sun is in the sky, but at night sleep evades me.

I have found that it is easier for me to write blog posts at night when I can’t sleep than during the day. I think that can partly be contributed to not questioning my feelings and thoughts. I am usually so tired that I just concentrate on getting the words out and typing without too many spelling errors instead of second guessing what I am saying. Tonight I have come to the conclusion that there is more to it. I think I can open up more about my feelings because they are closer to the surface. Those feelings are the monsters under the bed that I can avoid during the day, but come out in force in that halfway place between being awake and asleep.

I try many things to help me fall asleep. I have been known to drink herbal tea, count sheep, use imagery, meditation or listen to music. Distraction seems to be the trick. I have a special “sleepytime” playlist on my iPod. When that does not work, I put on one of my favorite movies and set the sleep mode on the DVD player. Usually one of these works. I know the movies or song lyrics by heart that I can close my eyes and can the movie scene in my head and know what is coming that I do not need to watch the tv.

However when I have a lot on my mind I find that even these tried and true solutions don’t work. I have written lately about my searching for hope and meaning of my life. I have been thinking about these topics so much they are keeping me up and even spreading into my dreams when I do sleep. Why is it that you can tell yourself all types of things, but you cannot hide the truth from yourself in the dark of night? If only the routine of my parents looking under the bed and in the closets as they tucked me into bed could still work. After countless nights of insomnia I am no closer to figuring out how to solve my problems with hope or conquer the fears of living with and dying of cancer, but I am determined to keep trying to sort it all out. So after I publish this new entry and before I lay my head back on the pillow I will concentrate on sweeping my demons away from my mind, at least for tonight.

Discovering Hope

2010-09-21T02:12:00.000-04:00

In my last entry I wrote about my realization that I was living without hope. I have spent a lot of time since then thinking about hope. What is hope? Where does it come from? How do you sustain it? And maybe the most important question is: How do you decide what to hope for?

Several months back I wrote about an episode of Grey’s Anatomy where a terminal cancer patient talks about how sometimes hope can be scary. I can totally relate to that. For me hope has been a double edge sword. Before every scan, every blood test, every doctor’s appointment I would hope that the treatment was working, that I was getting better, and that I was winning and cancer would lose. Time after time I would be disappointed and my hopes would be squashed. I have had this disease for three years and in that time I can only think of one time that the news was good. I will admit that sometimes there was some good news, but at the same time there was also bad news. I felt as though for every step forward I took three steps back. Even when I was told that one time the tumors had shrunk and the clinical trial worked I was afraid to hope that it would stay that way. In the end time showed that the good news could not hold.

After time and time again of being disappointed I told myself that I was changing what I hoped for. I decided to hope for more time and for that time to be quality. That hope came true, but did I dare to hope for even more time. I can’t put a finger on when I stopped having hope, but I am sure that is was not a conscious decision or even tangible moment. I think it just became easier to lose expectations and maybe then I would be surprised when good things happen, or rather would be happy when bad things didn’t.

I don’t know if I have any true answers for the questions I listed above, but I am going to give some of them a try. Let’s start with “What is hope?” As usual when I want to find an answer to something I go to Google and see what the vast expanse of the internet can tell me. So I searched for the definition of hope. The most common definition I found is: To wish for or desire something with the expectation of fulfillment. If we go with that definition than one would have to believe there is a chance that what is hoped for would happen, but even more so would have some belief that it would happen.

That brings to mind another question. How do I hope for something when all the evidence shows the probability is low for it happening? Could it be that giving of hope that something will happen is preventing yourself from having the expectation and thus a way of protecting yourself from getting hurt.

This brings me back to yet another one of the original questions. What do I hope for? Maybe the flaw has been that I have been hoping for the wrong things. I thought that I have made the decision to live for each day and find joy in every moment and had hope that I could do that as long as possible. So where or when did that change. When did I stop living for the moment and just settle for existing? For that I have no answer. I can’t even tell you what I am hoping for, but I can tell you that I am searching within myself for some answers. I am looking for signs of the things I want to hope for, what I want my future to be. I do not know what my future holds and it scares the bejeezus out of me. The truth is I don’t know how long I will live. Medical science tells me I should not have been alive this long. I might have only a few more months to live or I could live another year or 5 years. What I have figured out is that it does not really matter how long I live, but it matters what I do with the time I have. So I am starting a new journey. This is a journey of discovering what I can do right now to be happy and what I want to do with my life. It kind of feels like trying to answer the “what do I want to do with my life”. The answer for today is I don’t know, but I will ask myself that question every day until I get some answers.

I once told someone that life is not a spectator sport. I said that life is about rolling up your sleeves and getting your hands dirty. I guess it is time for me to take my own advice and leave the bleachers and get back on the field.

To close this post, I pose a few questions for each of you to ponder. What do you think is the definition of hope? What are your hopes and what are you doing to make them come true?

Lessons Learned from Colorado

2010-09-09T04:19:00.000-04:00

The last weekend in August, I was in a canoe paddling down the Colorado River. Well in truth I was not doing much paddling, but I will get to that later. I had the opportunity to go on a canoe trip with 13 other single cancer survivors for a three day camping trip starting near Grand Junction, Colorado canoeing into Utah on the Colorado River.

Since I returned, I have spent the last two weeks trying to write this post about my experiences. For some reason the words have just not been flowing. I have started several drafts beginning with how the trip came about for me, but for some reason as soon as I got to the point where I wanted to write about what the trip meant to me, the words failed. I am not totally sure I can find the words, but here is my effort. There are probably many reasons why this is tough for me to write about, but I think the main reason is this trip was very emotional for me. It was challenging to me not only physically, but mentally as well. In truth I think it was life changing, or at least changed the way I think about things.

I can’t think of a time over the last year that I had a better time than the six days I spent in Colorado. Don’t get me wrong, I have had some wonderful times with family and friends, but for many reasons this trip was different.

I went out early and stayed with a friend and visited some of my favorite places and found some new ones. Colorado is beautiful and driving through the mountains and floating down the river with the rock walls on either side was breathtaking. But that was not the most incredible part of the trip. If you have ever seen pictures of that part of the world, you are probably wondering what could be more beautiful than the landscape.

There are two reasons for this. The first was just being able to be out on the water and camping again. I used to be a huge outdoor person; hiking, camping, and kayaking were just some of the ways I spent my free time. But all of that was pre-cancer. I had not been camping in over 3 ½ years and my hiking boots and camping gear had gathered dust. For the past three years the closest I have come to communing with nature was swinging in my hammock. Don’t get me wrong, spending afternoons in the hammock is a wonderful thing, but compared to hiking in Yosemite or kayaking with whales, it was really not cutting it as outdoors experiences go. The real story is I almost let cancer take away something that I truly loved. I almost let the fear of not being physically up for something stop me from even taking the chance.

The other and most important reason can be summed up in two words - the people. I had the opportunity to spend 4 days with people who not only get it, they have experienced it. We represented all parts of the cancer spectrum. Some were diagnosed when they were teenagers and were 10+ years out of treatment and others were diagnosed as adults and were just completed treatment a few months ago. The cancer types and stages varied from Stage 1 Ovarian to Stage IV Hodgkin’s and everything in between. Our age range was 22 to 59 and we came from all over the country. We had lots of differences, but two main things in common. We are all survivors and all single. These other men and women have all been told the three horrible words “You have cancer”. They have all endured surgery, radiation or chemo and the terrible side effects that come along with it, but most importantly they have all survived.

I have never been as humbled as I was as I got to know these other survivors and probably never been as inspired. I am so thankful that I got the chance to meet them and hear their stories.

I did not feel great during the trip. In fact, most of the time I felt like crap. The nausea, headaches and general body pain that have been plaguing me for several months reared its ugly head. I was worried that I was a burden to others on the trip and that I was not pulling my own weight. Thankfully, I was paired with a great canoe buddy and he did almost all the paddling. He even put up with me leaning over the side of the canoe puking up lunch and never once commented on the horrible sound effects I was serenading everyone with. Everyone went out of their way to make sure that I had a great trip.

As I am reading over this, I realize that I am not conveying one important thing that I have learned from this trip and that is hope. Somehow over the last several months or so I lost hope. Hope in living, hope of being happy, hope for a future, and hope of getting better. I don’t think it was a conscious thing or even an unexpected thing keeping in mind my diagnosis, but someone on this trip reminded me that without hope, you really don’t have anything. I was so tired of being scared, disappointed and preparing for death that I forgot to live. I forgot to find the things I truly enjoyed and find a way to do them. A year ago I was so determined to live in the here and now and find happiness and enjoyment in everything I did. In spite of my determination to live life to its fullest, I got caught up in the mundane of being sick. Looking back I now know that I have been wallowing in my own self pity because I felt crappy and did not have the energy to do the things I enjoyed. I learned from this trip to Colorado is you can feel like shit and still have a lot of fun.

I used to be called a dreamer, but sometime during the last three years I stopped dreaming. I think in many ways I have given up on life. I guess I thought if I did not hope for anything past this moment, then I would not be disappointed. I was letting cancer win. That is not something I can do. Cancer may still cut my life short, but I need to find ways to make sure it does not take away my happiness and most importantly change who I am. Cancer changes a lot of things about a person. It has changed the way I look, the things I am able to do, but it does not need to change my personality. It cannot be allowed to change the core of who I am.

I have not yet figured out how to make sure I keep have hope or even what I want to hope for. I have a lot more reflection and journaling to do, and plan to talk to the people I met on the trip and other survivors to find out ways they have kept hope their lives even in their darkest moments. Acknowledging that I need to change the way I am thinking is the first step. Now I just need to figure out the next ones, but I know I can do it because I have a lot of people in my corner to help me.

Thank you to all that made this trip possible, it has meant more to me then you can imagine.

What makes a person a cancer survivor?

2010-08-12T16:09:00.000-04:00

Recently the Texas Journal of Nursing reprinted one of my blog entries to educate nurses about the issues of young adult cancer patients. In the article the author described me as a cancer survivor. I showed the article to a couple of friends and family members and one them commented that they did not think I was a survivor since I still have cancer. It made me think about what makes a person a cancer survivor. The National Coalition for Cancer Survivorship (NCCS), National Cancer Institute's Office of Cancer Survivorship and LIVEStrong (Lance Armstrong foundation) all define a person as a cancer survivor from the time of diagnosis and for the balance of life, a person diagnosed with cancer is a survivor.

For a long time, I had a hard time laying claim to the title of “Cancer Survivor”. It has been three years since my diagnosis and throughout that time I have never been in remission or had a test result of no evidence of disease. I preferred to call myself a “Cancer Fighter”. I felt that calling myself a survivor was tempting fate and since the cancer was still ravaging my body, I had not survived the disease.

Last fall I participated in the 24 hour cycling event, 24 Hours of Booty and when I pinned my number to my jersey, I added the “I’m a Survivor” sign as well. I decided that even though I had not beaten the cancer, the cancer had not beaten me. I had survived two years of living with cancer, months of chemotherapy, radiation treatments and all the side effects that come along with treatment. I was indeed a survivor.

When I was questioned whether I was survivor when the article came out I told the person I was a survivor, but since then I have spent a lot of time thinking about it. While contemplating about this, I have been thinking about all the people I have met that are also battling cancer. In the past three days I have learned that a 9 month old baby has had more than 3 brain surgeries and is preparing for yet another one as I type this. Another friend has learned about a 3rd recurrence just this week and is facing more treatment and the possibility of another surgery. Then there is a 5 y/o boy that has been battling cancer for two years and is having severe stomach pain that is a result from chemotherapy. These are just a few examples of those who are valiantly battling cancer and are indeed surviving it.

If we think along the lines that you are not a survivor until you beat cancer, what does that make the millions of people currently undergoing cancer treatment? I would indeed call them survivors.

I googled the definition of a Survivor. I found the following definitions.

1. a person or thing that survives; specif., a person who has survived an ordeal or great misfortune

2. a person regarded as resilient or courageous enough to be able to overcome hardship, misfortune, etc.

3. a person who continues to function or prosper in spite of opposition, hardship, or setbacks.

I think about those I know that have been affected by cancer and feel they embody these definitions.

Wikipedia defines a cancer survivor as an individual with cancer of any type, current or past, who is still living.

I disagree with the Wikipedia definition. I think we should go one step further. I believe cancer survivors include those that have died of cancer. Cancer may have taken their life, but if we follow the meaning of the definition, death does not trump a person being a survivor.

There are two dates coming up that invite you to celebrate with me and use them as a time to reflect on what makes a cancer survivor.

September is Ovarian Cancer Survivor Month and September 3rd is National Teal day. I invite you to wear teal on this day to remember the many women affect by Ovarian Cancer. (http://www.ovariancancerawareness.org)

October 2nd is LiveStrong day. It was inspired by Lance Armstrong as the anniversary of his cancer diagnosis. I encourage you to wear yellow on that day to support the 28 million people in the world that are cancer survivors. (www.livestrong.org/livestrongdaypledge)

I would be interested in hearing your thoughts on what makes a person a cancer survivor.

Eenie, Meenie, Miney, and Moe

2010-06-30T21:52:00.000-04:00

Yesterday I went to the pet store and picked out some new fish. It was depressing over the last week to look at an empty tank and it is wonderful to see some new vibrant fish sharing my room with me. Meet Eenie, Meenie, Miney, and Moe. (pictured below from left to right)

They behave differently than Horton. They are much more active and tend to chase each other. Unlike Horton, they love fish food and come to the surface every time I lift the cover. Last night I could not sleep, so I just sat up in bed and watched them. It was very relaxing. I will write more soon, but I wanted to introduce you to the new additions to the family.

A Lesson on Life and Death

2010-06-22T03:40:00.001-04:00

Many of you know that I used to have a golden retriever named Oscar that I loved a lot and that I miss often. What many of you don’t know is I have another pet, a Tetra Fish named Horton. I brought him home in November 2008 with a few other pals (Thing1 & Thing2), but he was the only one that remained after three months. He took the move to my parent’s house in stride. I found myself talking to him every day; saying good morning or good night, telling him about my day or just asking how he was. I know it might seem odd that I talked to a fish and could not understand me or even hear me, but he was my buddy. I knew things about him like what food he preferred and which live plants he liked in his aquarium to munch on.

Horton died today. I had him for over a year and half. When I woke up I looked over at his tank and saw him lying on the bottom and I immediately thought he was dead, but upon a closer look, I realized that he was still on the process of dying. He was on his side and his gills were moving. He was gasping for air. It was so painful to watch him knowing there was nothing I could do to save him or to ease his suffering. I knew too well that death has own time frame. I screamed an “Oh no, Not Horton” when I first saw him and then proceeded to sob for several minutes.

It may seem weird to you that I felt like I have a bond with Horton and probably think that my reaction to his death was a little much. You might be thinking to yourself, yeesh it was just a fish and maybe asking if fish can feel pain. I know the Horton was just a fish, a tiny being in the circle of life. But he was my fish, something I care for. Even as I write this, tears are in my eyes. I think there are many reasons for my emotions. Horton has been a constant in my life during a time that everything seems to always changing and often in crisis. He also depended on me to care for him. His death is just another example of the losses that we experience every day and for me another harsh reminder of life and death. It was hard to watch him die without thinking about my own death. Did he feel pain? Is that what it will be like for me as I am dying? Will I be lying on my bed gasping for breath?

My energy level is low these days and I try to keep it in reserves so I use it when I want to go out with friends. So I spend a lot more time in bed or lying on the couch. I try to fill my time up with books, tv, music, movies and crossword puzzles, but the more I feel bad, the more time I have to think. I have been thinking more lately about the process of dying and what that will be like for me. I don’t know when I will die. My time was supposed to be up over a year ago. I am very blessed to have been given the last year and love the gift of each day. It is hard though to not wonder about the future. I wonder why I have been given this extra time and I wonder when this time will end. I feel like I am living in a bit of limbo. It is impossible for me to plan things for the future. I have no idea how I will be physically in two weeks, two months. Do I dare hope for more time? I have been preparing for over a year for my death. Sometimes I think I am ready for this whole dying process to start already. Please don’t take me wrong, I do not want to die anytime soon, but wondering when it is going to happen and how it will happen is excruciating. Tonight I am sad. Sad for the loss of my pet and sad about how painful it is to think about my death. I think it is ok to be sad though and good that I allow myself to think and write a about this topic. It is an important one and we may not want to talk about it, it is always there in the back of my head.

Life goes on…..

2010-06-18T01:26:00.000-04:00

….and sometimes it feels as though it is happening without me and I am left behind. I had dinner tonight with my ex-boyfriend and I found out that he and his wife are expecting a baby girl to be born in August.

As I lay here tonight I find myself very sad. It is not that I miss him or anything like that. We dated for five years and though we loved each other and genuinely enjoyed being together we knew we were not meant to spend of lives together and we ended it on good terms and have become friends. I am so happy that he found someone that he was meant to be with and I am very excited about their news.

I just feel as though his wife is living the life that I wanted, but not in a jealous way at all. Before cancer I dreamed about meeting someone that I would spend the rest of my life with. I am not sure if I ever wanted kids, but cancer took that decision away from me right along with the opportunity to be with someone for the rest of my life.

This week I went to a young adult support group and the topic was about sexuality and relationships in the context of the young adult cancer survivor. It was a good discussion, but I left with the understanding that a relationship and sex is not an option for me. We talked about when is the right time to disclose that you have or had cancer. There were some great suggestions, but I don’t feel like they apply to me. How do you tell someone that you are interested in that you have advanced incurable cancer that is spread throughout my body, that I have no job, can’t drive, and live with my parents and I have no idea how long I will live. Of course this conversation would happen after I met someone that can overlook how much weight I have gained due to having cancer and that I walk with a cane. I know that live in a dream world sometimes, but get real people; something this farfetched does not even happen in my dreams.

This is just another example of how much cancer has ripped from my life. Just another loss that I will work through.

I have been feeling like shit lately. May was a busy month and I think I overdid it. I am glad I went to camp and also to the church retreat, but with those trips on top of my sister and her family in town I now seem to be paying the consequences. I have not written a blog in a while. There are several reasons why, including my busy schedule over the last month, but in the beginning it was because I was sleeping pretty good and my usual writing time occurs when I can’t sleep. Unfortunately I can no longer give the same reason. I have not been sleeping well over the past two weeks, but I have felt so poorly that I did not have the energy to write. I mostly just laid in bed whimpering until exhaustion took over.

Last night I had another one of my coughing fits that seems to become more frequent of late. After coughing so much I was sure I had coughed up a lung, I stopped coughing long enough to vomit. After feeling physically spent I dragged myself back to bed and curled up into a fetal position and cried. Finally around 4am my body gave in and allowed me to sleep. When I awoke I at felt a little rested, but was just worn out. I took it easy until my doctor appointment this afternoon and when I got home all I wanted to do was curl back into the ball on my bed. However, I had plans to meet my ex-boyfriend and did not want to cancel on him two weeks in a row.

He commented that I looking like I was doing well and he was surprised by how much energy I had. What he does not know was that I was snoozing on the couch up until the moment he picked me up and immediately upon return home I took a nap. There is something that provides energy when I really want to do something. I call it being “on”. No matter how I am feeling, if I need to be “on” I somehow find the energy and am usually good for about two hours before I start to crash. I think part of the reason I am able to find energy to do something I really want is because I am so determine to live life on my own terms and to be able to enjoy my time with people. I do not spend too much time with my friends and when I do I want it to be good, so I push away how I feel and concentrate on enjoying it. This does not always work and when it does however I was feeling beforehand comes at me ten-fold, but it is usually worth it.

Now that I have been able to let out my feelings, I hope this horrific headache will go away and I can get some sleep.

Camp Mak-A-Dream Ovarian Cancer Retreat May 13-17, 2010

2010-05-22T12:10:00.005-04:00

View from camp

Last weekend I had the awesome opportunity to go to beautiful Gold Creek, Montana to Camp Mak-A-Dream’s Ovarian Cancer Survivors retreat.

After a long day of travel and having to accept the assistance of wheel chairs, I finally arrived at Missoula’s airport and was met by the smiling faces of some of the camp’s staff members. After going to baggage claim, I met a few of the strong warrior survivors I would be spending the weekend with.

Caught this one walking to the cabin,

now I understand the term "Big Sky Country"

Meeting these women and hearing their stories is an awe inspiring experience. Like me, every one of them has been treated for Ovarian Cancer and although all of experiences are similar, each of their journeys is unique. There were 12 survivors at the retreat and I loved the intimate setting that gave us all an opportunity to get to know each other.

Some of the ladies enjoying the nice weather

The three days was spent in workshops and small groups. We had a motivational speaker talk to us about the importance of doing things that feed our heart and asking for help, an oncologist that discussed treatment advances, American Cancer Society’s Look Good, Feel Good workshop, art therapy, healing benefits of tea, coping skills and self image, time in the art studio to express our inner creativity, massages, hot tubbing and plenty of time to chat with each of the women. The staff was great about supporting us and worked very hard behind the scenes to make our stay at camp wonderful.

Sampling of my art projects

I had a couple of rough days. The trip west took a lot out of me and that and the elevation difference, I was in pain and very tired. The first day I tried to be very stoic and not let on to anyone how I was feeling however, it was apparent on my face on day two that I was not doing very well.

People came to my aid and set things up so I could sit in comfortable chairs with plenty of pillows to ease my pain, fetched things from my cabin so I did not have to walk much, and many other supportive acts. I realized that all you have to do is ask for help and you shall receive. The staff and participants were happy to help and expressed to me that it feels good for them to help others.

Jamie - One of the Presenters

Like last year, there are some women that I will stay in touch with and others that I will probably never speak to or see again, but that does not mean they will not be in my thoughts on a daily basis. I will send them healing thoughts for their own journeys hoping their treatment will be successful and they can get back to their lives pre-cancer. Although many of those with a cancer diagnosis are never really the same after they have been told those three horrible words “You have cancer”, many are able to live a more aware life and in some ways a better life post cancer.

At camp we refer to the other survivors as sister geese. Geese fly in the “V” formations. Each goose, by flapping her wings, creates an upward life to the goose that follows. When all the geese do their part in formation, the whole flock has a greater flying range than it would if each bird flew alone. In addition, when a goose lags behind, the others “honk” her back into place. And more importantly, when a member of the flock has to drop out because of sickness or injury, at least one of her flockmates will stay with her to watch over and take care of her.

"International Night"

The women I have met at camp have become my flockmates. We are now a part of a special sisterhood, unasked for, but deep and empathetic in our support. We have bond between us now, and all it takes is a plea for support and we will rally around. I lost two ‘sister geese’ from last year’s retreat and I will always remember Marcia and Michelle and the impact they made on my life.

To all the women at camp this year, I thank you for sharing your story with me and making me a part of your journey through this horrible disease. I am better for knowing you and will always keep you in my thoughts.

Moments of Transformation and Gratitude

2010-05-10T02:13:00.000-04:00

Last week I went to a lecture called “Healing from the Inside Out: The Regenerative Power of the Human Spirit”. The focus of the lecture was to address the concept of healing can happen from the way we think, feel and live our life. The facilitator, Dr. Lerner, talked about a moment of transformation that people experience that often leads them to think about life in a different way. Sometimes it is caused by an illness, crisis or some type of event. Dr. Learner discussed that he has worked with many cancer patients who describe the news of their diagnosis as their moment of transformation and that in that moment they learn what is most important in life.

I found this very interesting. I think we often coast along life doing what we think needs to be done more than actually living life. That was definitely the case for me. About six months before I diagnosed I was suffering from a major depression. After much soul searching I realized that I really did not enjoy my life. I was doing many things I thought someone of my age “should” be doing. I had a good job, which although I enjoyed, it was not what I really wanted to do. I had been talking about dreams I had for the future for many years, but I never seemed to put into action anything that would start those dreams. As my New Year’s resolution I decided that 2007 was going to become the Year of Alli. Starting then I was going to figure out what exactly would make me happy and I would go after it. I changed a lot of things that winter and I have to say, I had more happiness in those months than I had in years. I started remembering what I was all about.

Then my diagnosis hit. It was not what I really had in mind when I started the Year of Alli. Looking back however, I think it was because of my attitude that year that I had the strength to get through my diagnosis. I think I did a pretty good job of balancing my illness, treatment and still trying to be happy, but I think in whole I was just coasting along again doing what I needed to do to survive. It was not until I was told I was going to die that I think I really started to live again. Somewhere along with the prognosis of death, I had my transformative moment. It took me accepting I was dying to truly live. In many ways I think I am one of the lucky ones. Not because I am still alive, but because I have had this time to concentrate on life. I think that knowing you have a limited time to live allows you to stop taking for granted all the wonderful things you have in life.

Some of the only ways I have gotten through all the treatment, physical and mental challenges of the last several years was all the good times I have had that I could remember. As I was sitting in the hospital enduring chemotherapy, I would close my eyes and pretend I was back on the hiking trails. One of my favorites is at Yosemite. I tried to remember what it felt like climbing up those trails. It was exhausting and painful at times, but I also remembered how beautiful it was the whole way up and how exhilarating it was to get to the top of Nevada Falls and look over the Yosemite Valley knowing I made it up there under my own steam. Whenever I had to undergo radiation, CT scan or other test, I would close my eyes and imagine I was back on the beach of Aruba or kayaking with the whales in Washington State. I often spent time going through pictures. Whether it was pictures of California, hiking or camping trips or my cherished pictures of my family I was always able to stir up some memory that helped me make it through the rough times.

During my lowest moments when I would feel too weak to leave the house, I would go through my “Warm Fuzzy” box. This was a box of mementos from my time in California when I was a youth minister. This box contains pictures, notes and letters from youth, crafts and other memories. After realizing how much this box cheered me up, I started collecting items from other times in my life. I never got around to putting any of these things in a scrapbook, but that is ok – a box is enough. Whenever I need a pick-me-up I just open up a box and I am transported to that moment and get to relive it.

I watched a movie last night where the main character would tuck her son into bed at night and they would list the things they could be thankful for. If the son could not find something he was grateful for, she would find a way to take what upset him and turn it into an opportunity to be grateful. I have thought about that a lot today. It has not been one of my better days. I have been feeling very weak and generally feeling crappy. It is easy on days like this to get down in the dumps and be negative, and I need to find a way to concentrate on the good stuff instead of the bad. I have decided to make it a daily ritual for me to name the things I am grateful for tonight each night as I go to bed. So as I go to bed tonight I am grateful for being able to spend another Mother’s day with my family. It was wonderful to have brunch with my family and I loved seeing my nephews today. I am grateful for their hugs. At one point I grabbed my youngest nephew and tickled him. When he had enough, he cried “Auntie, Auntie”. This is my cue to stop. It is our version of saying uncle. What a wonderful moment. I am so grateful for every moment I get so see his and all my nephews smile.

A bit of this, a bit of that....

2010-05-04T02:50:00.000-04:00

Over a week has passed since I last wrote a post. Since I usually write at night when I can’t sleep, we can infer that I have been sleeping better. Until tonight that it, since it is 2am and I am exhausted but wide awake. I have thought about writing over the past week or so. I even have a list of possible topics, but there has been something stopping me from writing. I wrote several weeks ago that I have been faking it and only been showing the good stuff to people. My blogs are somewhere that I do not feel I have been faking it. Since I write at night when I am tired, I am able to write just how I feel at that moment and there is little or no filter on whether I should say something or not.

During the day, that filter is very much there. I start to think of things to say and all of a sudden, I start talking myself out of things I was going to write, worried about how people might read them, afraid my words might hurt someone or worrying if I should share so much. I then start to think about what type of things the people that read my blog want to hear. I came up with a whole list of topics. The thing about all this, I created this blog because I wanted to provide my family and friends with updates on my cancer, tests and treatments. I never dreamed that people that I did not know would want to read it. It quickly dawned on me that this blog was as much for me as it is for others, if not more so. It has given me an opportunity to let everything I am thinking and feeling out. It does not matter if I am having a great day or a bad day; I have a place to write about my feelings, experiences, hopes, fears, dreams, and prayers. The benefit of this blog format over a journal is I can share it with people and have gained so much support from the comments and feedback. Somehow people I did not know have found my blog and this has given me an opportunity to share my life, my journey with others; some in similar situations and just maybe my words can help them.

So before I talk about how I feel today, I just want to thank you for taking the time to read this blog, for taking time to comment. I love reading the comments that people write. Sometime I know the person comments, some are anonymous and some of you who I have never met, I consider you another one of my friends and support group. They say it takes a village to raise a child, I say it takes village to go through an illness and my blog has allowed me to share with my village my feelings and in response I receive so much support.

Lately I have been feeling tired. This seems to be a theme for the last 8 months or so, but there is a weariness that is added to the fatigue. I am always struggling with getting quality sleep, but that has been more important than ever. My tailbone is still causing me a lot of pain. This is very frustrating to me. It has been almost 3 months and I had hoped that at this point I could stop using the cushions, but no luck. I have two cushions that are my constant companions. I have even named them. The one I use most often is a red round rubber doughnut named Bess. Sitting in hard chairs, car rides or sitting in restaurants would be impossible without her. The other cushion I have is a blue foam wedge with a cut out in the back for my tailbone. His name is Peter and he is the one I use when sitting on sofas and cushioned chairs. I know I look pretty funny walking into a restaurant or bar carrying a red doughnut with me, but I am getting used to the stares. I am not sure why I felt the need to name the cushions Bess and Peter, but they just seemed to fit.

Last week I started taking a water exercise/therapy class at the YMCA with my mom. I have not been able to get any type of exercise for over a year due to breathing issues, balance, pain, tailbone, infections and other physical limitations. I thought about yoga, but due to the tailbone and the balance issues that is out. So we looked into something in the water. Mom and I started last week and have had two classes so far. The next one is tomorrow morning, which is why I really need to get some sleep tonight. I can tell you that this class is whipping my butt. I felt so tired after class last week. It seems like the things we are doing in the water should be easy since it is low energy, no impact and an easy pace. But let me tell you that while walking/jogging in the water is easy than on land, it is still no walk in the park. Even though it hurts and is tiring, it feels good to be able to do something besides lay around the house. I think it will even help get me back on a normal sleep cycle.

Next week I go to Montana to Camp Mak-A-Dream for an Ovarian Cancer Survivors Retreat. I went last year and it was wonderful meeting other women that have gone through the same thing. There are workshops and games, art and other fun stuff. I am really looking forward to it. I honestly did not think I would be alive right now and in no shape to travel across the country, but I have been blessed with time to be able to do this. Camp is free, but I could not have afforded to go if a wonderful friend had not provided me with his frequent flyer miles to cover the airfare. Until my house sells, I have no money to spend on anything but medical and prescriptions costs.

Well folks, I am off to sleep now, or at least an attempt at sleep. Thanks for reading.

A visit from beyond

2010-04-22T03:13:00.001-04:00

I just had a great experience. I was sleeping and Oscar came for a visit. Even though it was a dream, it was more than just a dream; it was my precious Oscar coming to say hi.

In the dream I was at my condo and I walked into the living room and there he was. When I first walked in the room, I noticed there were big puffs of cotton balls and some torn pieces of blue fabric. I thought to myself, what happened here. Then I looked down and Oscar was lying on his side and he looked up at me and his ears perked up.

I was surprised to see him and I said to him “I did not know you were here. I am so glad to see you, but you did not need to make such a mess to get my attention”. I remember thinking that he probably needed to go out. Around that time, I heard wonderful music. I started to turn off the lights and told Oscar to head back to the bedroom and I would be right there. When I went to turn off the music I realized the room held little furniture and no stereo.

As I walked to the bedroom to let Oscar out the back door, I wondered where the music was coming from. I looked for Oscar, but at that moment I woke up. The music I had heard was real and had awoken me. I had left my iPod on when I went to sleep, without setting sleep mode. Over 1 ½ had passed since I must have fallen asleep. As I woke up I felt both happiness and sadness. I am so glad that Oscar came for a visit, but so sad it was so short.

There are so many things about my dream that felt off, but in that moment I was sure it was happening. This is not the first time that Oscar has visited me in my dreams. The first time he visited was a couple months after he died. We were both on the bed lying forehead to forehead. I remember what he felt like, what he smelled like. When I woke up and realized that he was gone it was like losing him all over again. After that I enjoyed every visit, they are such gifts. I know it is his way of telling me hi and that he is patiently waiting for me. The memory of him is still so clear in my mind as I write this, the way his muzzle was white and his eyes danced when he saw me, how warm his fur felt when I rubbed his neck.

I am annoyed with my unconscious self that I spent precious time with him being upset with him that he tore up one of his toys. I remember thinking that I would have to clean it up before someone comes to see the condo. Even in my dream I was aware my condo was for sale and I did not live there anymore. It is weird that I could be aware in my dream that I was moving, but not aware that Oscar passed away over two years ago. I was surprised to see him, but if was so real to me, it did not occur to me at the time that he was not there. When I awoke, I stayed in bed for a moment and talked out loud to him. I said,

“Oscar my sweet boy, thank you for coming to see me, I love you so much. You are such a good boy. I know you are just over the beyond waiting for me. I miss you buddy, but I will be with you soon.”

As I became fully awake I knew it would be a while before I could go back to sleep and I wanted to write down what happened so I can remember it very clearly.

I was feeling kind of blah today and a visit from Oscar was just what I needed. Even with all the love and support from all my friends, I sometime feel very alone. His visit helped me remember that I am never alone and that he is always with me. I miss him so much and it felt so good to have him with me even for just a few moments.

It made me wonder if the same thing will happen to me when I am dead. Will I, like Oscar be able to come back and visit the ones I love in their dreams? Will I be able to talk with them, assure them I am ok? Will it be a comfort to them as it to me when I see him or will it cause them distress?

I have written before about what I think heaven will be like for me. I have no fear about what will happen when I die. In fact, it is a great comfort to me to have a vision of the afterlife. I only fear the actually process of dying. It is then when I think I will feel pain. I imagine that the moment I die all the pain and suffering will float away and I will feel this sense of peace and comfort like I have never felt before. I am certain that Oscar will be waiting for me to show me the ropes. At this moment I am impatient to see him again, but at the same time not ready for my life to be over. I think that when the time comes for me to die, I will be ready. When Oscar was still alive, I remember telling people that Oscar would tell me when he was dying and when it was time to let him know. He was a sick a couple of times in the months before he died, but part of me knew that his time was not up. I can’t explain it, but I just knew when he was ready for me to let him go. It was an awful time for me, just weeks after I was diagnosed and I needed him more than ever, but somehow I knew it would be ok and it was his time to die.

I only hope that when my time comes my family and friends can feel the same calmness and sense of certainty that I felt with him. I want people to remember that I am in a safe, wonderful and peaceful place and just like Oscar was, I will be waiting for them.

I'm not ok - I've been faking it.

2010-04-13T06:12:00.000-04:00

Wow, three blog posts in one week!!! I guess I have a lot to say or maybe I have been very contemplative lately.

I read a blog of fellow cancer survivor today. We met online and although we have never met in person, I consider him a friend. Reading his blog was emotional for me. He wrote so many things that I have felt, it was like he was tapped into my feelings. It is filled with emotion and thoughts around his cancer, his recent relapse, treatment and what if any future he has. It reminded me of my past few posts, especially about hope being scary.

I get so much support from my online friends that I have met through Planet Cancer, Facebook and Twitter. We may have not met in person, but I feel as the majority “get it” and therefore inspire me all the time. Reflecting on my friend’s blog and some comments made recently by the people in my life, I wonder if I have been completely honest with people about where I am at physically and emotionally.

Writing this blog is a great release for me and often is a complete stream of consciousness. As you know I have worked very hard for the cancer to not control my life and I am committed to making every moment count. I wonder if by trying to be positive I am giving off the wrong signals to my friends and family. I want the short time that I am able to go with my friends to be filled with joy; I find it hard to really talk about how I am feeling. After a few comments from friends about how good I am looking, and that I must be feeling great, it dawned on me that in not wanting to fill our time together with complaints about how I feel, I have not shared the truth about what is going on with me. Am I doing a disservice to them and/or myself? I think some people have the impression that I am actually getting better since I do not complain about my physical health. It is now obvious to me that my sunny/fun/smiley attitude is giving people the opposite message I should be. Sometimes when people ask me how I am doing, I respond with “I’m crappy” They often say you can’t tell by looking at me. My response then is “I fake it well”.

I was getting frustrated with some of the comments people were making about how good things are going, how I have lots of energy and that I seem really happy. For I while, I felt like screaming “are you really looking at me”. Then it dawned on me that my coping mechanism s to get through every day is giving them false indicators and because I don’t want the time we spend together to be sad, I don’t talk about the reality of how I am really doing.

I am a very functioning person, I always have been and I keep a lot close to my chest, not wanting to impose what I am feeling to others. So I have been faking it and obviously doing a banner job at it. In order to get the kind of support that I need, I am going to talk to some of my closet friends and let them know what has really been going on.

Someone made the comment the other day that I am sure taking a long time to die and asked me if I was getting better. He meant it to be funny, but I wonder if there wasn’t some element of truth in it. I have lived twice as long as we thought and on the outside I don’t look as sick as I did while undergoing treatment. But looks can be deceiving.

So here I am going to let it all hang out.
Most days I feel like crap. I am always super exhausted. I don’t get much quality rest. Even when I nap it is restless. I rarely stay asleep for more than two hours of a time. I have horrible night sweats and hot flashes throughout the day. It seems I am either cold or hot – no in between. I have horrible headaches every day. I almost always feel short of breath. I cough when I laugh (which sounds funny – it really is not funny at all) and it is a painful cough. It makes be not want to laugh. I don’t use my cane around the house because it is a pain, but I can’t go out to the store without it. The little bit of walking up and down the aisles at the grocery store wear me out. While my tailbone is getting better, I am still on a lot of pain. I only have one chair and pillow where sitting for any amount of time is comfortable. I use a rubber cushion to help be sit in the car or on hard seats, but this is only comfortable to 20 minutes max. Walking, standing for longer than a couple of minutes and bending over are painful still. It is not the sharp pain from before, but an ache that won’t go away.

The tingling in my left arm and leg has increased and I seem to have it all the time and it not just a numbness, but a painful tingle that radiates from my fingers up my arm and my toes up to my hip. I have been having a lot more joint pain and between the shortness of breath and the painful joints, walking up my parent’s stairs is very painful, yet I find myself doing it several times a day – a lot more then I should. My memory is awful. I sometimes can’t remember was I was doing half an hour ago. Forget knowing what movie I watched the night before. I struggle to find the right words and if it is not written down, it does not happen. Most of this has been happening for a long time, and I have learned to function the best as I can with it, so I do not bring it up.

Above I talked about the physical stuff, but did not even touch on the stuff I am dealing with mentally and emotionally. Moving in with my parents was hands down one of the hardest things I have ever down. It has been a huge adjustment losing my independence, giving up my house and getting it ready to sell. I miss driving, I miss sitting alone in my condo and reveling in the quiet and doing whatever I like whenever I want. I miss being able to go out at the last minute if I feel like it whether it be a movie or starbucks. Everything has to be pre arranged and I have to depend on someone to get me there. Going through my possessions and sorting them to be given to friends, charity, garage sale and what I am not ready to get rid of has been emotionally taxing and very painful.

Then of course there is the emotional toll the disease is taking on me. My health is declining every day. I see it even if most people don’t. I have been facing my mortality for a long time and in many ways have an acceptance of it, but I still grieve everyday for what I have lost and how much I hurt. I am depressed and between feeling like crap and feeling down there are many days I want to stay in bed. Quite frankly, I am sick of being in pain and not being able to live my life the way I want. I am making the best of it, but that does not mean it is not hard and it does not hurt.

I don’t think most people really get what I am going through and I guess it is my fault. When asked how I am doing, I tell people that I am hanging in because I am not sure they really want to know the truth. So I have not given my friends and family an opportunity to know what is going on and how to support me.

I am going to try to much better about sharing what is truly going on, but I hope my friends and family will be able to realize that I am really hurting, physically, emotionally, mentally and spiritually.

When hope is scary

2010-04-11T13:08:00.000-04:00

A couple of weeks ago Grey’s Anatomy had an episode where a terminally ill cancer patient is asking her doctors for physician assisted suicide. As you can image this was an emotional episode and very controversial. One of the doctors was against this and tried to persuade the patient not to do it. The doctor felt that the patient should never give up hope and there were other options then giving up. I could identify with this patient. I don’t want to die hooked up to all kinds of machines, on a ventilator and having my death be dragged on. I don’t think this would be good for me or my family.

There was once scene that really struck a chord. The doctor that was against it came in and asked the patient why she was so determined to die. Here is her response.

“Maybe you have to be dying to understand, but there is this thing that happens where death stops being scary. What starts being scary is hope, because it is not true. Even if they found a cure for cancer tomorrow, it’s too late for me and hanging onto hope may make you feel better, but it just makes me feel alone.”

I don’t think I would ask for physician assisted suicide, but I stopped praying for a cure a long time ago, my prayers turned to one for time. It was very frustrating for me when people around me insisted that there was still hope and that I should not give up and did not like it when I talked about death or even had the nerve to make jokes. Although not meant to be, these words were very hurtful to me. I am not giving up, I have chosen to live. There is movie (“Heaven on Earth”) where a teenager has sarcoma that has spread to her liver and she is dying. One of her options is to continue treatment that might give her more time, but will ravage her body even more. What about the quality of that time? When challenged about her decision to not do treatment, she told she was giving up. She responded with:

“I am not choosing to die, I am choosing to live, I just won’t live as long as you.”

I have spent a lot of time thinking about these two scenes and feel as though I could have written them. I would love to live a long and happy life, but it seems that that is not in the cards. I have come to terms with my reality and to some level I am at peace with it. I know it is hard for others to accept my diagnosis; it can make them uncomfortable, make them think about their own mortality and often leaves them without knowing what to say. If I could give any advice to the friends or loved ones of someone with a life threatening disease, I would tell them to respect the patient’s wishes. Even if you can’t understand how they feel the way they do, it is not a choice that came easy to them.

I have lived longer than expected and I contribute that to three things. First was my decision to stop chemotherapy - I believe it was weakening my body, gave me poor quality of life and I would not have survived the last year if I have continued it. Secondly the weekly acupuncture – My practitioner has focused on alleviating some of the side effects of the cancer, whether it be supporting lung function, treating the headaches or just boosting my energy. I notice the difference in how I feel after treatment. The third and maybe most important thing is my attitude. I have chosen to make the most out of my time. I live in the moment and try not to get dragged down by what is happening to me. I have really crappy days, but there is always something good to be found in those days. Getting caught up in the “Why me?” and “Life Sucks” mentality just takes away from the little time I have.

I can’t say I love my life, but I can say that I am relatively happy and I love my perspective on life.

Gave up dying of cancer for Lent

2010-04-07T04:03:00.001-04:00

Well it is after 3am and surprise, surprise I am still awake. It has been a couple of weeks since my last post, so I think I failed on my goal of posting weekly, but I will continue to strive for a post at least once a week. I also want to let you know that my shift key is not working and I am waiting for Dell to send me a new keyset. I have just now realized how often you use the shift key with your right hand. Please forgive me if I do not capitalize correctly, I am a little too tired to notice.

Last time I wrote about my birthday reflections and received feedback that people really enjoyed reading them, so I have a few more reflections I want to share.

In some of my posts I mention my faith. I don’t always get to church often, mostly because mornings are very tough for me, but that does not reflect on how important my faith is. I believe my faith has helped me get through these past few years. My two favorite seasons of the church are Advent and Lent. These are not to be confused with Christmas and Easter, which are very important in the church year, but it is the preparation for them that is most important for me. Advent and Lent are not only about preparing for Christmas and Easter, but about focusing on the journey towards these two awesome celebrations. I have always said that getting there is half the adventure and we should not focus solely on the destination.

I try to get all of my shopping done prior to advent so I can concentrate about what the birth of Christ means to me. I try to spend time during lent reflecting on Jesus’ own journey towards his death. One could say that I have been on the same journey the last two years and my own lent has lasted more than 40 days. I think Lent is most commonly known for giving things up. In the past I have given up things like swearing, chocolate, soda, vending machines, pizza, sweets, beer, happy hours, and eating out. Except an improved diet I am not sure what if any benefit giving these items up has done for me. Sometimes I have been successful, but sometimes knowing you gave something up makes you crave it even more and I have cheated. Years ago my priest sad that Lent should be about removing the things in our lives that causes distance in our relationship with God. She also said maybe we should take this time to consider what we can do for others. If we do give up the afternoon candy bar from the vending machine, we should think about donating the money we would have spent on the candy bars to a charity. I have also taken things on during Lent including daily meditation or bible study. Sometimes I think these might strengthen my relationship with God more than giving things up.

I do have a point to why I am talking about religion and the virtues of lent. For the past three years I have been expending so much energy fighting cancer that I have not had as much time, emotional capacity or desire to focus on my spirituality as I would have liked. Not to mention that fact that I was royally pissed at God that I had cancer. The idea of giving up something for lent the last two years was laughable. The first Lent after diagnosis I was still in chemo and I could not get behind giving up anything I enjoyed or made me feel good considering that most the time I was miserable. Last year I was pretty sure I only had a few months to live and I basically said life is too short to make any more sacrifices than absolutely necessary.

On my way to Ash Wednesday service this year, my friend and driver asked me what I was giving up. I flippantly replied that I was giving up dying of cancer. I had not really thought about doing anything for Lent and this was just another case of me being a smart ass. However, I started thinking about that comment during the service and for several days later. Why shouldn’t I give up dying during lent? Having terminal cancer certainly has put a hardship on my relationship with God. Plus, I have found that having something to look forward to in the future helps me stay strong and focused and encourages me to strive to stay alive to do it.

So this year I officially gave up dying for Lent. Of course having the sense of humor I have, I made a number of jokes about this like: “I can’t die till after Lent or at least till Holy Week.” or “Dying on Good Friday has been done before and gives a lot of expectation of resurrection.” Another one is “Heaven help us if I am the daughter of God, the chosen one.”

Not sure if you noticed, but I tend to make more jokes about the things that I worry about or spend a lot of time thinking about. I try not to, but I do think a lot about dying these days and when that will occur. I was determined that it would not happen this spring, so giving it up for Lent seemed like a good thing to do. As I was sitting in church during the Easter Vigil service, I thought to myself “I did it – I am still alive!” “Wow, for the first time, I gave something up for Lent and never cheated or even had the desire to cheat”. I was so thankful that I was still alive as that service, that for the first time I felt like God answered my prayer about having more time. Then I thought, “What do I do now that Lent is over? I am certainly not read to die today so do I continue giving up dying. How long can that last?

I don’t think it is practical for me to say that I am giving up dying of cancer. What I have given up is being the person who is dying of cancer. I am the person who is living my life even though I have a terminal illness. Instead of worrying about when I am going to die, I am planning things I want to do in the upcoming months so I have things to look forward to.
These are the things I have so far:

May - Ovarian Cancer Survivor Retreat in Montana at Camp mak-a-dream.

May – visit from my sister and her family. Spending a lot of time with my nephew that lives in MO.

June – I have decided to participate in this year’s Relay for Life. Please consider joining my team or making a donation. Here is the link to my site: http://main.acsevents.org/site/TR?px=15221509&pg=personal&fr_id=24972

July – Taking a cruise to the Bahamas with my oldest sister and husband, 3 of my adorable nephews and my parents.

I also want to set up one day a week that I meet up with a friend for a visit and grab a coffee, drink, food or just hang out. My current theory is the longer the list, the longer I have to stick around.

Does anyone else have any ideas of things to put on my list of things to live long enough to do?

Birthday Reflections

2010-03-19T02:01:00.001-04:00

I turned 38 this week. In many ways this is a miracle since I was not expected to live this long. I truly did not believe I would be alive to see this birthday. Two years ago, I was told I only had 6 months to live and I was fairly sure that it would be my last birthday. I stopped praying for a cure and concentrated on having more time. That prayer was answered and I was given another year of life. Then again last year the doctor’s told me I had a short time to live. Again, I was facing a birthday as though it was my last. I even had a huge party – a celebration of life. This year I tried not to think about whether this was indeed my last birthday, but tried to take it as a gift. It was another day I was able to spend with my 3 of my nephews. Tuesday was also the first day in a while that was sunny and I am ready to embrace spring.

I have had a couple of conversations this week that have made me reflect on my feelings.

I was talking with someone about my nephews and she said that she always thought I would be a good mom. She then asked me if I ever thought about being a mom and if I regret not having children. I told her I think I was always meant to be a great aunt and not a mom. I have thought about children before I got sick and I never really thought I would have any. Now, facing my prognosis, I am glad I have not had children. Leaving behind my parents, sisters and nephews is hard enough. I can’t imagine what it would be like to have a child while facing my mortality.

Tonight I was talking to a new friend and she asked me if I was at peace. I answered with an easy yes, but it is not really as simple as that. It has been 2 years and 10 months since I have been diagnosed and I have been dealing with the fact that I would die from this disease for over two of those years. At first the idea of being at peace with the situation was laughable. I spent the first year taking whatever treatment that was offered and concentrated on fighting as hard as I could. Peace was not something that was achievable so I did not think much about it.

Much of the second year was spent trying to accept that the treatment was not working and that I was dying. Part of me knew it would not be a fast process and for that I was happy that I had time to find acceptance, enjoy “today” and prepare myself, family and friends. Most of the second year I cried every day, I was mourning the loss of my life, my independence, my inability to do the things I loved. I was so angry, I could not pray and felt so removed from my relationship from God. There was not much peace during this time.

Something changed during the last six months or so. I shifted from measuring life in the number of days I had left to taking every second as a gift and enjoying the moment. One of my favorite quotes these days is “Yesterday is history, tomorrow is a mystery and today is a gift”. This change of thinking is one of the reasons I believe I am still alive. I try not to focus on the bad stuff. Believe me this can be hard. There are days I feel like shit and do not want to get out of bed. These last month’s I have been dealing with a nasty respiratory infections, difficulty breathing, headaches, and weakness causing me to use a cane, increase lethargy and pain and to top it off a broken tail bone. Those were just the physical stuff. I have also had to adjust to living with my parents, not being able to drive anymore, cleaning out and selling my house. There are also conflicts with my church and a couple dear friends that weigh heavily on my heart.

There are days I don’t think I can take anymore and then I remind myself the gift of focusing in the now. I cannot think about what happened an hour ago, or might happen tomorrow. I have to live in the moment. Alcoholics talk about talking it a day at a time. Sometimes I take it second by second. I allow myself to feel whatever is crossing my mind and then I decide if that is going to affect the next minute of my life. Lately, I have found that am having a tougher time with this and have been allowing things to spill over into the next moment and cloud over that time, but I continue to focus on this goal and try to move past the bad stuff.

This is a long way of explaining my answer being at peace. I have no control over the cancer and how it is affecting my body and ultimately it will kill me. But I have been given time to experience the phase of dealing with a life threatening illness. I have reflected over my life and all the joy and opportunities I have had. I am truly blessed for what my life has given me and what I gifts I may be able to pass on to others. I am not facing death with a lot of regrets, nor am I resisting it, but rather accepting my journey will go one in another way. I believe I wrote a couple months ago about what I think heaven will be for me. It is that belief that helps me get through the difficult hours, minutes and seconds.

The third question that I was asked this week is what kinds of things help me cope.
There are so many. First are my friends and family, the connections I have made with people through the internet. Through Facebook, Twitter, and my blog I have met so many incredible supportive people. My blog gives me an opportunity to write out my feelings and hopefully helps someone in a similar situation. I also have a new project I am working on and hope to introduce in April.

I have been keeping up with my passions. I cook when I have the energy; I have been knitting and have a whole list of projects I want to finish. Music has been crucial – when I can’t sleep, my iPod helps me deal with the night’s silence and soothes me to a place I can fall asleep. Two weeks ago I learned about a family of eleven brothers and sisters that record music and publish their videos on YouTube. They are all extremely musically talented. The videos they have created so far offer incredible harmonies and you can tell by the videos that they are tight knit family and are enjoying what they are doing. They sing because it is something they enjoy and I don’t think they realize how much their music has effect on others. They may not know there are people like me that receive strength from songs and seeing the joy other people have when doing something they love. I reached out to the family to let them know they have inspired me and their music has been a great gift. I was overjoyed to get a response from them and to top it off they sent me an email this week wishing me an early birthday greeting. The email included the link to their new song and they included a message to me at the end of the video. Please check out this incredible family – Fannin Eleven. Here is the website http://fannin11.com/ and their YouTube channel with their latest song. http://www.youtube.com/user/FanninEleven#p/u/0/UG4Ly5DBn1Y/

I hope you enjoy their music as much as I do.

Enough birthday reflections for one night, however I’d like to leave you with one more thought. Think about what things you have in your life that bring you great joy. Focus your thoughts on living life while enjoying those things and let go of anything that might distract from that.

Irish Blessing

2010-03-14T15:46:00.002-04:00

Last week I was at a craft store when I saw a display of items for Saint Patrick’s Day I saw a bunch of plaques with Irish Blessings in them. . I always loved the Irish Blessing “May the road…”. At first I did not see it and then I found it all the way in the back. I started saying it to mom and busted out in tears. I used to sing this at a camp/retreat I attended for youth leaders. For some reason this really spoke to me. Mom bought it for me and hung it in the family room. All week I have been walking around singing it. This week I have been watching YouTube videos and got the idea to try my hand at making a video. In honor of St. Patrick's day and my Irish roots, I recorded the song and found pictures that I have taken throughout the years on my hiking and exploring trips. Please forgive the singing, but I hope you enjoy it.

Is cancer a gift?

2010-03-11T13:33:00.001-05:00

I have not written a blog post in what seems like forever and a day. I think there have been several reasons for this, but I am going to try and post at least once a week from here on.

Lately I have been talking and reading about people’s journey with cancer and other life changing illnesses and events. One theme that has come up over and over is these events in our lives are gifts. I have spent a lot of time thinking about this and reading over past journal and blog posts. I think I have even used the gift metaphor myself. I have come up with the following questions and thoughts that I want to share.

Has my cancer been a gift?
My cancer has definitely changed my life in so many ways. I am not the same person I was before my diagnosis and treatment. I think some of the changes are good, but as there often is, some bad has come along as well. I think I took things for granted before I got sick. The biggest was time; I always assumed there would be time for me to accomplish my dreams. I focus more on the “now” and try to make the most out of every day. I also let things go more. Before I used to let the little things get me upset and would sometimes dwell on them. These changes did not happen instantly upon getting sick, but have happened as part of the journey. I also say what I think, this includes the negative thoughts. I sometimes think the world should revolve around me and other people’s needs are not as important as mine.

Are all gifts positive?
Have you ever received a birthday or Christmas gift that you did not like? I have opened gifts and looked at them and thought “What was this person thinking”, “Who can I re-gift this to?” or “How soon can I exchange this?” I have ended keeping some of these gifts and while they might have come in handy (like the carbon dioxide detector from my boyfriend), t hey were not some of my favorites. When I found out I had cancer, I thought immediately that I did not want this. I certainly did not want to give this to someone else, so the re-gift was out, but I did not want this “gift”. I have decided to use my experiences to help others by sharing my story and have often been told I am an inspiration, so I think that I have used this experience for the good, so in the end it might be a gift that I can give to other people, but still would like to not have received it in the first place.

Where is the exchange policy?
If I think of cancer as a gift, I wonder what I would have done if there was an “exchange” policy. Would I have traded in my cancer for a different type of illness? If so, what illness would I like to chosen? Definitely something treatable and not always life threatening. How about irritable bowel, diabetes, chronic allergies or arthritis? I am not trying to say that other illnesses are not bad and do not want to diminish anyone who has them, but if I had to be sick, I would like to be sick with something else. I have had Asthma for over ten years, this has not been in a walk in the park, can be very scary and has landed me in the hospital, but I never questioned my reality or if I would die from it. I broke my tailbone 4 weeks ago and can’t believe how painful this has been and has certainly affected everything in my life, but I would gladly have chosen this over having end stage cancer.

So I ask you these questions and hope that you will comment and share your answers.

If you have cancer or experienced another illness or life changing event, do think it is a gift?
What do you think about gifts being positive or negative?
If you could trade in your cancer or other illness, what other illness would you choose?

Help - Late night melt down

2010-02-01T03:26:00.004-05:00

This is my first post of the New Year. I have a whole list of topics I want to write about in 2010, including spotlighting some very cool things that I have done with a couple cool organizations. Tonight however, my heart is heavy with something and the only way I think to work through it by writing.

Several months back I wrote about moving out of my own home of 12 years and moving in with my parents. It was really hard to leave my house, but it was made easier because I did not have to pack everything up at the time, just the things that I needed with me. I knew that sometime in the future the condo would go up for sale and everything in it would need to be sorted, packed up, given away or put up for yard sale. When I started thinking about moving in with my parents I thought about what it would be like to “dissemble” my house and in essence my life. The thought of it was too much for me, so I put it out of my mind. I told myself that it was something my family would be dealing with and I most likely will all ready be gone by then.

One of the things about knowing you are dying you can push the stuff you don’t want to deal with on the back burner saying that someone will have to cope with it all after death. Well, I am still alive and although I have been feeling sicker the last couple of months, I am not showing any signs of dying in the near future, it looks like I have to deal with this.

My mom wants to put my condo up for sale on March 1st. She approached me tonight and told me she wants us to go over to the house tomorrow and start going through things. I wanted to scream and rage NO at the top of my lungs. Instead I sulked. She said she understood how hard this is for me, but how could she. How can anyone who has not gone through this have the slightest idea how this feels?

For the past two months I have visited my place roughly once a week. Nearly every visit I would end up hauling stuff from my place and try to find a place for it in my parents’ house. These items have been as simple as a book, sweater, winter boots, a few of my kitchen items that I found I did not like cooking without. We have been slowly emptying the pantry when we use up an item at my parents house and replace it from my stash. None of this has been particularly difficult, mainly because it was just moving stuff from one place to another. These future visits have a different meaning entirely. The purpose is to get my house reading for sale. The idea of going through my stuff overwhelms me. I know I have a file cabinet filled with irreverent stuff that needs to be reviewed and purged and the important stuff needs to be brought to my parents where they will be needing it. I know I have a closet full of clothes that I cannot fit into and going through these and donating to charity is a good thing. Put these are just two of the many things to be done, just the tip of the iceberg.

How do I empty out a house that I loved for nearly 13 years. What do I do with the stuff my family does not want. The big stuff is easy, but what about the drawing picked up in Monterey, CA, reminding me of the otters I saw play that day. How about the hat that looks like a lampshade that I wore all around New Orleans on my birthday. What about all my books, my cookbooks, or novels that I love to re-read. I already have a list of a few items I would like certain people to have, but what about the stuff that is not deemed important enough, what happens to them? Are they going to end up on a garage sale table for $2.00? How can I decide what to do with that stuff? It is important to me…..it is me.

Sometimes I wonder if cancer is the evil beast or if the evil is really all the stuff that comes with it; treatment, finances, lose of health – not actual illness, but the loss of being able to do the things I love live hiking, lost of independence, and so much more.

I try not to feel sorry for myself because it does not seem productive. I try to stay in the now and appreciate everything I have each moment and live today and love it as much as I can, but right now I am not there. I am mad. Since 2007 I have fought for my life going through painful treatments, losing my hair, my energy, losing part of who I was while trying to balance the new part of being a sick person. I am not working, stopped driving and depend on others to get me around, had to stop living alone and move in with my parents, now I am selling my place. I don’t want to decide what should happen to a knick knack that I bought in The Bahamas on vacation twenty years ago. The stuff in my house represents who I am a person, examples of events and places that have shaped me. If feels like having to go through them means it is time to get rid of me. I know I am dying and I feel life slipping away every day, but this just makes me feel like “what do I have to live for?”. I never had the delusion that I would get better and move back into my place, but I am not ready for this.

So many people tell me how strong I am and how I am an inspiration. We the truth is I am not that strong, I have just been avoiding the things that make me weak, I have been a coward. I am sitting here at 3am crying my eyes out and dreading for the day to come. Maybe if don’t go to sleep the morning will not come and I will not have to go over to my house and begin getting rid of my life. I know that morning will come and I will do the responsible thing and go over and get started, but this is breaking my heart and I don't know who will be picking up the pieces.

Please send me a comment if you have any advice for how I should deal with this.

Do I hear someone coughing or a seal calling a mate?

2009-12-29T02:13:00.001-05:00

I am in the midst of a bad coughing fit. I am so tired and crawled in bed to try and get some rest. As soon as I laid back down I started coughing. It is a terrible sounding cough - a cross between a hacking cough, a wheeze and a seal mating call. One of my friends asked me if I arch my neck like the seals do when calling to a mate.

It is so hard to breathe when I get these fits. I often cannot get enough air in between coughs that I end up gasping for air. It is terrifying. Tonight I heard a whistling sound coming from my lungs as I exhaled. Geez – I am on 37 and sound like an old lady with emphysema. Sadly, it is becoming the norm that I am up coughing in the middle of the night. I try to lay propped up with tons of pillows. Just tonight my parents were changing my sheets and my dad commented on how many pillows I had on my bed and asked if I needed them all. At the moment I am using 8 pillows; 1 breathing wedge, 2 body pillows, 4 regular pillows and a small pillow to give my neck extra support. Good thing I have the whole queen bed to myself with the exception of teddy, but he is used to cuddling.

I am feeling so old these days. I am tired all the time, walk with a cane, in the middle of menopause, have minor incontinence, walk really slow, get worn out just by grocery shopping, have no short term memory, gained a ton of weight, and cough all the time. I ask you “What good is dying young if you have to experience old age while you are doing it? Aren’t dying cancer patients supposed to be skinny as a rail and look like a holocaust victim?” I look more like the Pillsbury dough boy.

As I got into bed tonight I started reflecting on the past year. It has been a very hard year, but in reality this whole year has been a gift. I was not expected to live through the end of the year. In fact, at the end of last year the doctors said based on my condition at the time it could be only 3-4 months. This was a year longer than I was given in 2008, so I am doubly pass my expiration date. One thing I did right in 2009 is lived for each day and made the most of the time I had. I made the tough decision last December to stop treatment and concentrate on quality of life. This was probably the best decision I have made in my entire life. I believe that if I had continued treatment, the chemo would have killed every cell in my body until I had no more to give and I don’t believe I would still be alive. I whole heartedly believe that stopped treatment, going to acupuncture and a positive outlook has given me the last 12 months.

It has not been easy and sometimes I wonder how much longer I will have to endure all this crap. Don’t get me wrong, I am not giving up or want to die, but sometimes I wonder if I have fought long and hard enough and maybe it is time for me to move onto the next phase of my life.

I don’t spend a lot of time each day complaining about how I feel or thinking about dying, but lately between losing three friends to cancer and continuing to feel like shit, I sometimes daydream about what will happen next.

I think about what heaven will be like. For me I think it will be a continuation of my life here on earth. I picture myself in the mountains in a cabin, doing pottery with a whole pack of golden retrievers around me. I have always dreamed of a cabin in the woods and can close my eyes and picture it. The only change after these years is there is a big screen TV over the fireplace programmed to the “Earth” channel and I will be able to turn it on and be able to watch my family and friends. These thoughts are very comforting to me, because not only will I be fulfilling some of my dreams, I will be without pain and can check in on everyone. Maybe being so at peace at what my afterlife will be makes me yearn for it on nights like this.

I have tried hard this year to stay in the moment. I try not to focus on what has happened to bring me to this point nor the journey ahead. It is hard not to think about death and I think it is an ok thing to think and talk about. I am terrified of the actual process of dying and worry about pain and gasping for air. Death is the inevitable and I have just been given the gift and the curse to know that mine is happening earlier than most. It would be easy to let myself get down in the dumps about what is happening to me and rant about how unfair it is, but that just takes energy away from living. I have been criticized that I do not show that much emotion and can talk about my death, memorial service and legal details without blinking an eye. I have not found the book that outlines the correct way to behave in this situation. I guess some people think I should be sad, depressed, and crying all the time. Believe me I have cried buckets about these things. I have ranted and raged, thrown things, broken glasses and punched walls, and screamed at God, but I am past that now. There was a time where I was in that place, but now I just want to enjoy life as much as possible. I do find I have little patience for people who choose to complain a lot and take life for granted. Hopefully I can show them how to appreciate life for what we have and live for each day.

I have tried hard these past few weeks to not question if this my last holiday with my family. I did that last year and it tore me up inside. I cried all the time and found it hard to enjoy things. However, it is impossible to not think about this being my last Christmas. Instead of being sad about it I am trying to remember the good things – like the look on my nephew’s faces when they opened their gifts and got just what they wanted, or the perfect sound of one of my nephews telling me he loved me or signing Christmas songs. New Years is very hard. How can I look forward to a new year when I just don’t know how much time I have left. I am also very conscious of how my death will affect my loved ones and wishing them a happy new year seems wrong somehow. Maybe what I can do is wish my loved ones an appreciated year. I hope that each one of you can live for today and don’t forget to stop to smell the roses and show gratitude for all that we have.

I HATE CANCER!!!!

2009-12-14T02:25:00.005-05:00

I think this is the first time I have written those words. I don’t think I have even thought those words before. Maybe I never wanted to give cancer the power before, but there it is: I hate cancer.

You may be thinking that it is about time for me to hate something that has effected me as much as cancer has. My life and the lives of my family and friend’s has been forever changed by cancer. But it is not my experience with cancer that has made feel this way, it is what cancer is doing to people I care about. On Friday I learned that two fellow cancer survivors were not doing well.

I met Shawn at a Stupid Cancer Happy Hour last year. He was another young adult that was fighting hard to beat this horrible disease. In March I had the privilege of attending his end of chemo party. Two months later he had a recurrence. He started treatment again, but it did not slow him down much. He was very active in cancer advocacy and is Mr. May 2010 of the Colondar. I found out that Shawn passed away today while being surrounded by his family and friends.

The other survivor I met when I attended an ovarian cancer survivor’s retreat at Camp Mak-A-Dream in May 2009. Marcia was currently undergoing treatment, but she like everyone else I know is a fighter. She too had a recurrence in early summer and found out the cancer had spread. On Friday I learned that treatment was not working and they turned their focus from treatment to comfort and have started hospice. From the latest update today, it sounds like her time with us is limited. She is currently at home with her family and spent the day enjoying the holiday decorations.

I met Shawn the day I found out the cancer had returned with a vengeance and when I met Marcia I had stopped treatment and was focusing on living life to its fullest. From the moment I met both of them I knew I was going to die and it was just a matter of when. Both Marcia and Sean were doing well and it never occurred to me that one of them might not win against this disease or event that they might die before me.

I have accepted my death, but I can not accept the death of people I know. It is just not fair. There is so much more that I want to write about this, but it is just too much for me to write anymore tonight. I thank you all for your continued support and prayers and ask that you send prayers to Marcia, Sean and their families.

This reminds me of this song.

“What about me?” By Shannon Noll

Well there's a little boy waiting at the counter of a corner shop
He's been waiting down there, waiting half the day
They never ever see him from the top
He gets pushed around, knocked to the ground
He gets to his feet and he says

[CHORUS:]
What about me, it isn't fair
I've had enough now i want my share
Can't you see i wanna live
But you just take more than you give

Well there's a pretty girl serving at the counter of the corner shop
She's been waiting back there, waiting for her dreams
Her dreams walk in and out they never stop
Well she's not too proud to cry out loud
She runs to the street and she screams
[CHORUS]
So take a step back and see the little people
They may be young but they're the ones
That make the big people big
So listen, as they whisper
What about me

And now i'm standing on the corner all the world's gone home
Nobody's changed, nobody's been saved
And i'm feeling cold and alone
I guess i'm lucky, i smile a lot
But sometimes i wish for more than i've got
[CHORUS]

Here is a link to the video.
http://www.youtube.com/watch?v=kqyIwZpr5y0

Trying to gain some excitement around the holidays.....

2009-12-07T03:48:00.001-05:00

It’s three in the morning and I am wide awake. I had a short snooze while attempting to read my book earlier and now I am wide awake. I did not even get a nap today. For some reason it is days like these when I am busy and do not get a chance to take a nap that I have trouble falling asleep at night. Maybe I am over tired. It could also be that my mind is going a thousand miles a minute. I am feeling anxious, but not exactly sure what about. I have been having more anxiety lately. I can usually ignore it during the day, but it is hard to ignore in the middle of the night, when the house is quiet with nothing to distract you from your thoughts.

Today I decorated a Christmas tree. My parents have this small tree that usually put in the kitchen with cookie cutter ornaments and gingerbread men. This year they allowed me to decorate that tree with my ornaments. I have had a tree in my condo since Christmas of 1999.

I stated collecting ornaments even before that and now have quite a selection. I have ornaments generations old, handed down by my mother’s great grandmother. Unwrapping my ornaments and placing them on the tree is like a walk down memory lane. I have a memory or story for each of the ornaments and they all have different meanings. As a chef in early adulthood a former life, I have several related to cooking (a pig dressed in a chef jacket and hat, reindeer made of cooking utensils, and a Santa on a rope of garlic). I have a whole collection dedicated to my love of nature, hiking and camping (hiking boot, back pack, tent, and hiking Santa). I also have ornaments that I picked up during many of my trips to Aruba, Disney and other places. I can’t talk about my ornament collection without mentioning the dog ornaments. As many of you know I am a golden retriever lover. I have at least ten ornaments depicting golden retrievers frolicking. And I have a couple very special ornaments for my dog Oscar. My friend Sara helped me decorate the tree and with every ornament we picked up I would tell her who gave it to me and what it meant something to me.

This was just another wonderful reminder that I have had a rich life and am very blessed. I am not one that is defined by my possesses, but it is nice to have something that when you look at it takes you back to the moment you received it, purchased it, or however to came to have it and you remember what you felt when you first saw it and what reminds you off.

I honestly did not think I would see Christmas this year. In a way I made my goodbyes to the holidays last year. Christmas and New Year’s was very tough for me last year. I had decided to stop treatment and was processing the prognosis the doctors were giving me. Advent is one of my favorite church seasons and last year I did my best to enjoy it, but in the back of my mind was voice that kept saying this is the last time you will have Christmas with your family, the last time you decorate your tree, the last time you get to share your nephew’s excitement about Santa on Christmas eve and then watching them enjoy their presents on Christmas. It was hard to celebrate New Year’s because I had no idea how long I would be alive. I went to Christmas Eve service at my church last year and I cried all the way through it. It was not dainty tears running down my cheeks, it was body wrenching sobs.

I am amazed (and so are my docs) that I am seeing another Christmas and I do see this as the blessing it is. But it is a mixed blessing. I have the joy of sharing this time with my family and friends, but I also have the voice back in my head reminding me this is most likely some of my last experiences. I know that anything is possible, especially when you take in account that I am doing fairly good I was not expected to live this long, but I know that I am dying and I know with every cold, breathing attack, and increased tiredness that each day is just one day closer to the end.

The last year has been about quality of life and make sure that I do only what is really valuable to me and to do as many things that make me happy as possible. I am living life for each day and all that it brings. Some days are bad, but many wonderful things happen too. I just need to remember these next couple of weeks to live in the moments. To not think about whether is the last time I will see someone or do something, but to just cherish the moment and live in the present.

On a somewhat unrelated comment, I have been getting a lot of feedback from people about the blog and have been amazed how many people are reading it. I would love it if you would leave a comment and let me know what you like about the blog or if a posting spoke to you in any way. This blog may be about me, but it is also about all of you who are a part of my journey and if there a topic you would like me to talk about or questions you have, please feel free to ask. Thank you for your support.

My Thanksgiving Thoughts

2009-11-26T02:33:00.011-05:00

Tomorrow is Thanksgiving, but I am having a hard time being grateful. I know I should give thanks for all the time I have been given this year. At the beginning of the year the docs said it could be as long as a year or as little as three months. I never expected to live past the summer, much less Thanksgiving. I know I have been very blessed with all the things I got to do this year and time spent with family and friends, but this past year has been hard and sometimes I just do not feel very thankful.

Christmas is around the corner and I can not get excited about it. The last two years I have had an open house the second week of December. I thought that maybe we should have one this year and that would give me something to look forward to and maybe help get me into the Christmas season. But after the last two weeks of not feeling very good, I have decided I am not up for it. It is very hard to make plans since I never know how I am going to feel in a few hours, not to mention the next couple of days. Last week I was hit with what seemed like the 24 hour flu and while I felt better the next day I felt the effects for several days. Last Wednesday night I had a breathing attack that lasted over an hour and left me very weak. I had to cancel my plans for the next day. All of that totaled to three events I needed to cancel and countless hours in bed. I went out on Saturday and paid for it by spending Sunday in bed. Instead of just one nap a day, I am up to two or even three, but even though I am exhausted I have trouble going to sleep at night. It does not seem fair that I can fall asleep in minutes during the day and it takes me hours at night.

As I read back at what I have just written it seems I just went off on a tangent on the things I am ungrateful for. So much for trying to reflect on the meaning of today, let’s see if I can do better.

I can tell you that I am grateful for my parents and them allowing me to move back home. It has been hard and an adjustment for all of us, but it helps knowing that I am not alone if I get a breathing attack or need help with something. I am also thankful for all the love and support that people have shown me, especially my cyber friends. It cheers me up when I look at facebook and twitter and realize there are so many people out there that I have never met in person that are providing support. Thank you very much.

Last week a good friend that I used to work with undertook an incredible challenge. He participated in a 50 mile run. He told me last spring that he wanted to do this, but not just for himself, he wanted to run for me. In September he sent me an email and he wrote:

"I think about you often when I run. If I hit a tough patch and start to whine about being tired, I think about you and your fight. Somehow, I always run a little stronger and finish the distance."

He raised over $1200 on my behalf and that money is going to help other young adults with cancer. It is hard to believe that our friendship inspired him to undertake such a physically and mentally challenging task. I talked with him a few days befor the race and I was overwhelmed that he was doing this for me and could not find the words to thank him. I promised him I would keep him in my thoughts and send him good vibes so that he could have a great run. I thought about him a lot on Saturday and I think he is the one that gave me strength to do the things that I wanted to that day.

I once told someone that if I could help one other person by sharing my journey with cancer it makes some of it worthwhile. In the last two weeks I have been told by several people how I have inspired them. I even talked to a researcher from a national talk show and she told me that of all the people she has met, my story has touched her the most and she will always remember me. I guess that is what I should be thankful for – all the people who have listened to my story and been a part of my journey and the unending support I receive. From age 19, I always wanted to make an impact on this world and the people in it. I know now that I have, that this is my legacy. I may be dying, but I don’t think I will ever be forgotten and I hope that I helped others by sharing my life this way.

I started out writing post feeling very depressed, but now I am smiling as I think about all of you that will read this and how much each of you have helped me. So for today I am grateful to be alive, to be sharing the day with my family and for my connections with each of you and of course I am thankful for all the delicious food I will be stuffing myself with.
Below are a few pictures from moments this year that I am thankful for.

Please share with what you are thankful for this Thanksgiving.

The Ward Girls - Jan '09

37th Birthday Party - March '09

Easter '09 Family Pic

Easter '09 with Nephews: Adam, Sawyer, Zachary

Nephew Spenser's '09 High School Graduation

Beach Trip June '09

Spenser's growing too big for Aunti Alli's lap

Beach Trip June '09

Tickle time with Sawyer

Beach Trip June '09

Night at Trimpers on the Boardwalk - Bumber Cars with Spenser

Leaving Home and Leaving a Part of Myself

2009-11-07T01:45:00.003-05:00

Two weeks before my 25th birthday I bought a condo. It was a big step, but I was ready to move out on my own. It is a two bedroom garden style with a postage stamp yard, small kitchen and a fireplace. The walls were Pepto Bismal pink with pink carpet and the place was dirty, but it was all mine. After a couple of weeks of cleaning and painting I moved in with a new couch, hand-me-downed bed and a few borrowed pieces of furniture. Twelve years later it is not just a condo, but my home. I turned the place into my quiet haven. Each room has a touch of myself in it. Not only the sweat equity of painting the rooms, but pieces of my personality. I have created gardens in the front and back and made this place and the surrounding area truly my own.

Now on the eve of moving out, I look around and remember hanging each picture, picking out the curtains, making the cork wreath, taking and printing photographs and so much more. This place, my home is filled with memories and mementos of my life and travels, but also those of my family and friends.

Tomorrow I am moving into my parent’s house. Back into the home that has been in my family for over forty years and the bedroom where I spent my adolescence. I am moving home to my parents because as each day blooms, my cancer spreads and my body deteriorates. I am no longer able to be alone or take proper care of myself.

I gave up driving two months ago. I still use the car to drive the ¼ mile to the village center and get my Starbucks, prescriptions or a few groceries a couple times a week, but it is my parents that are driving me around to my appointments. As of tomorrow I will not be driving at all.

Giving up driving was hard enough, needing to use a cane even harder, but none of that compares to the loss of independence that is involved with moving back home. I am 37 years old, and with the exception of a couple of months while a friend stayed here, I have lived alone for over 12 years. I have been spoiled with the ability to come and go when I please, played my music as loud as I wanted, cooked whatever I craved and reveled in my quiet time. For those of you that have lived alone you know what is like. You can do whatever you want including leaving your dirty laundry on the floor, the dishes in the sink and shoes by the front door if that is what pleases you.

My parents are being great about me coming back to live with them. They are rearranging their house so that I may have my own space with some my stuff around me. But it won’t be the same as having my own room when I was growing up, because it is just more evidence of how my life is changing. I am happy that my parents live 15 minutes away and I will still be able to keep stuff in my house and can stop and get what I need or spend time here. I know it is the right thing to do, but damn it, why does the right thing sometimes have to be so hard.

I am going to miss my house, going to miss having all the little reminders of my life for the past twelve years within an arm’s reach. So tonight I mourn. I mourn for the loss of my independence, for leaving my home – my space of comfort and leaving behind so many of my possessions and I mourn for my declining health.

I remember the day I signed my name for what seemed like a thousand times that made me (and the bank) the official owner of my own home. I remember the trepidation, the excitement and the how if felt to know that I was starting a new chapter in my life. Tonight, I know that I am not starting anew, but in the process of finishing the last chapter of my life. They say you can’t go home again, but I am. It is not lost on me the symbolism of the return to where I grew up. I am closing the circle of my life. I started in my parent’s house and that is where I will end.

Reflections

2009-10-24T17:35:00.000-04:00

It has been a crazy week, but as I reflect on the past weeks I have realized they are all crazy weeks in one way or another. I keep asking myself why things can’t be simple. I have finally come up with an answer. Living is not simple, so why did I think that dying would be simple.

This is only one of the many revelations I have had recently. I am not going to share all of them with you now. It took me time to figure them out so I guess I am allowed to keep you guessing too.

One thing that I have decided is I am no longer able to take good care of myself. So in two weeks I am moving in with my parents. This was not an easy decision and it is going to be hard, but I know it is the right thing to do. I have lived on my own for 12 years and I love my condo. It is going to be hard to give it up, but in reality I am not really giving my house up completely. I am just taking some of my stuff to my parents and we will be keeping my place, so I will always be able to visit. I guess you can go home again.

Last night I watched “The Bucket List”. Watching this movie was something that I resisted for a long time. I was in the middle of treatment when it first came out and I was fighting for my life. I was not able to think about my bucket list. I was worried that I would not have time to check things off my list and would find the movie depressing.

For some reason last night I was ready to watch the movie and I am happy to say I can give it a good review. A few scenes were hard to watch because they hit close to home, but then there were others that made me laugh out loud. In the end, I think I am better for watching it. As I way laying in bed last night not able to sleep I though about my own bucket list. I could not come up with things that were realistic that I have not yet done. There are places I would like to visit like Alaska, Arcadia National Park, Greece and many others. There were experiences I would like to have, like falling head over heels love, waking up next to someone realizing that I was loved unconditionally and that person would be there every day. Let’s face it these things are not going to happen, but dreaming about them are not particularly detrimental.

I started thinking about it a different way. Maybe I should write my bucket list as something I would have written I was younger. Maybe my list should be a reflection of the things that I have done.

The bucket list in the movie included laughing until you cried and witnessing something majestic. I have laughed until I cried many times and I think seeing my nephews for the first time, hiking in Yosemite and sitting in Monterey watching the otters play was majestic. I have been blessed in my life and done so many incredible things and had awesome experiences and memories. So seriously who can ask for anymore than that?

Are You Welcome in the Cancer Club?

2009-10-11T15:37:00.004-04:00

A good friend and author has a great blog called Everything Changes. She recently posted a blog about young adult end of life issues and grieving. As many of you know this is an issue close to my heart. Her blog spurred a great conversation and there are many good comments. Check out her blog to see all the comments. http://everythingchangesbook.com/kairol/end-of-life-cancer

Here is the comment I made to her post.

I am an end stage cancer patient that has surpassed my “death day” expectations several times, but I know my time is near. I don’t know if it is weeks or months, but I listen to my body and I feel it shutting down.

Like many others that have commented, I have had a lot of support from friends both in and out of the cancer community throughout my treatment, including health professionals. Once treatment stopped working and was told there was nothing they could do that would be curative. I was encourage to do treatments that could give me more time, but would most likely make me very sick and weak. I decided that I wanted to focus on quality of life and have my last days me spent the way I wanted instead of being debilitated. Many people saw this as giving up, including my health professionals. I believe that especially for young adults the community focus is fight, fight, fight and feel that young adults are too young to die. I did not give up, I chose to live. My timeline is just shorter than most, but I was determined to make the most of everyday.

But the reality is that I am dying. I have noticed that many of my friends have pulled back as I have gotten sicker and do not want to talk with me about my feelings around dying and end of life issues. There have been a few exceptions in this which I will talk about. There are very few resources out there to help a young adult in my situation. I wish there was a guide book for the patient and their loved ones and for the professional community that discusses the issues they face and suggestions of what they can do to be supportive.

I go to a young adult support group once a month. This is made up of young adults with cancer that range from in treatment, just finished treatment, in remission for several years and me. When I first joined this group I was in treatment and found a lot of support from those who have “beat” the fight as well as those that were experiencing the side effects of treatment. As I got sicker though I felt like “Debbie Downer” whenever I talked about what was going on with me. As the months have passed I have been faced with much different issues than the rest of the group and wondered in I should stay in the group. While I got a lot out of their support, I did not want to hinder their own journey. I brought this up at a meeting and was unequivocally told that they wanted me to stay in the group. They said that it was a privilege for them to me to be there in this stage of my life and while they did not always know what to say, they wanted to support me. We have also talked about how they wanted to be notified about my health status when I could no longer come to group and ultimately about my death. I am so thankful for this group and the support they provide. I wish everyone had such a group to be a part of.

I know if is hard for cancer patients that are going through treatment or even those that are in remission to hear about someone that is having a different outcome. I realize positive outlook is important during treatment and many can not deal with the possibility they will not survive. However, as other people have written, the cancer community as a whole focuses on prevention, treatment, research and cures. They will quote the numbers of patients that are being diagnosed each year and the numbers of those that are dying, but what are they doing to support those that are dying and their caregivers?

It is hard for me when someone says that a person has lost their battle against cancer. Someone told me recently that I am not a survivor, because I will not survive cancer. I hate labels like survivor or victim because they have so many different connotations. I am a Survivor. I have survived the last two and half years of chemotherapy, radiation, countless side effects and being told the treatment has not worked. I am fighting to the end and will never give up. As the Lance Armstrong Foundation motto is LiveStrong. I am Living Strong, and I am Dying Strong.

24 Hours of Booty Newsletter

2009-10-11T15:14:00.009-04:00

I was asked to write an article for the 24 Hours of Booty newsletter talking about my recent experience at the Columbia event. Here is a reprint of the newsletter.

October 2009 Newsletter

Moving the Mission Forward- Alli Ward
Alli Ward is a 24 Hours of Booty participant and cancer survivor. She donned the coveted number 24 at this year’s Columbia Event. After meeting Alli, and listening to her story, we asked her to write a little bit about her experience at the event.

In the summer of 2007 I was diagnosed with Stage 4 metastatic ovarian cancer. After months of chemotherapy and radiation, the cancer continued to spread and the prognosis was not good. I started a clinical trial at Johns Hopkins and the treatment held the cancer at bay for several months. Last year, I learned about 24 Hours of Booty and decided at first to volunteer and then felt the call to participate as a rider. I had been a cyclist previously and saw this as a perfect opportunity to challenge myself and my body to do something I enjoyed as well as raise money for a cause close to my heart. I had recovered somewhat from my previous treatments and was getting stronger. I was not sure how much I would be able to ride, but I was looking forward to the first lap the survivor lap. I wanted to celebrate my improved health and lay claim to the title of cancer survivor. I was overwhelmed by the support from my family and friends and exceeded my original goal by raising $750.

One week before the event, I learned that the tumors in my lungs had grown and several more popped up. I was devastated, but was still looking forward to participating. Unfortunately, the inaugural Columbia event in 2008 was cancelled due to hurricane Hannah. I was saddened that the event was cancelled and even more so; very disappointed that I would not be able to ride the 2.25 mile loop celebrating myself as a cancer survivor.

Throughout this past year my cancer has continued to spread and my health has deteriorated. As 24 Hours of Booty in Columbia approached, I knew I would not be able to participate this year. Just one more thing the cancer had taken from me. I mentioned in passing to a new friend how much I wanted to be a part of this year’s event. He realized how much the survivors’ lap meant to me and contacted a local bike shop and arranged for them to donate a pedal powered rickshaw. Owen committed to pedal me for first lap and despite my health he found a way for me to participate in the survivors’ lap. Owen contacted the 24 Hours of Booty staff and they were excited about me participating in the event and were very supportive. As the weekend approached I was not feeling very well, but was looking forward to the event and found myself driven by the excitement of being able to join in on the fun. This year, once again, I was overwhelmed by the support of my family, friends and some strangers who learned about the rickshaw and donated over $800. On Saturday I showed up early to volunteer and was welcomed with open arms by the staff and coordinators of the event. I believe they were as excited and touched as I was that someone (my friend Owen) went out of his way to arrange a way for me to ride. An hour before the kickoff the skies opened up and it began to rain, but this did not dampen the spirit and enthusiasm of the riders and other attendees. I was given the very coveted number of 24 and with Owen pedaling we started off on the first lap of the day.

Other riders volunteered to pedal the rickshaw and I was able to complete 10 laps including the ceremonial last lap on Sunday. The last part of the lap included a hill that was tough with the added weight of the rickshaw and passenger. Volunteers and riders helped us by pushing us up the hill. Throughout the weekend I was able to spend time and interact with other riders and the Booty staff, including Booty’s founder Spencer Lueders. I was overwhelmed by how many of them understood what the event meant to me and was able to listen to their stories about how cancer affected their lives. I was also given the opportunity to share my own story. 24 Hours of Booty is more than a fundraiser, it is an opportunity to empower survivors and the community to get involved in the cancer movement. Athletes and ordinary people gave time out of their busy lives to ride for a cause. They rode in rain, sunshine, and throughout the night and demonstrated that they understood how cancer affects people’s lives and the importance of doing something to recognize the impact of this disease.

I will always remember that weekend and it has given me strength to face my future. I met many inspiring people and formed new friendships that will assist me in my journey. I am facing tough times ahead, but I also have the memories of what it felt like to be a part of such incredible experience. The feeling of the wind in my hair, the shouts of encouragement and the thrill of each lap will encourage me to keep fighting and live strong.

Final lap in the rickshaw- pulled by Spencer Lueders

24 Hours of Booty, Columbia MD, September 26-27, 2009

2009-09-30T00:50:00.017-04:00

This past weekend I had the privilege to participate in 24 Hours of Booty. It was an incredible weekend. In fact, I tried to write it for the past two days, but I could not come up with the words. For once I am speechless. I am not sure if I can express how much this weekend meant to me and the outpouring of support that was showed to me. They say a picture is worth a thousand words, so I am going to try and let these pictures and video speak for me.

I was given the coveted number of 24.

The Rickshaw

The first day was rainy, but fun was had by all.

Owen took the first lap, the survivor lap. It was rainy, but exhilarating. My parents, friends Sara, Eden and Adam came out in the rain to provide support and cheer on us. It meant a lot to me that they were there.

Owen and I starting the first lap

Finishing the first lap

Spencer Lueders, Founder of 24 Hours of Booty taking a turn on the rickshaw

Spencer took over pedaling the rickshaw for the next three laps. Another rider took over for the last lap of the day.

Bootyville Campground

The weather cleared up on Sunday and it turned out to be a beautiful day. Several other riders volunteers to pedal the rickshaw. Many thanks to Ally, Eric and Dan for taking turns and allowing me to go four more laps. We had a flat, but the support crew was great and many thanks to the Race Pace staff for getting us back on the course.

Ally pedaling with support helping us up the hill.

The last part of the lap included a hill that was very tough when pedaling the rickshaw and many volunteers and riders helped us by pushing up the hill.

Dan pedaling me up the hill with help from volunteers

Spencer pedaled me for the ceramonial last lap of the day. In total we did ten laps, this exceeded my goal from last year to ride 20 miles. It was an incredible weekend. So far we raised approximately $850.00 that will go to support those affected by cancer. Thank you to all of you that made donations.

Final Lap with Spencer

Many thanks to all the staff and volunteers that made this a special experience. Most importantly, I need to send out much thanks to Owen who made it possible for me to particpate in Booty. None of this would have been possible if he had not arranged it.

If anyone has any more pictures, expecially from Sunday, please send them to sonsalli@gmail.com

Help me celebrate cancer survivorship and raise money for cancer

2009-09-22T14:31:00.004-04:00

Last year, I signed up to participate in a bike relay to raise awareness and funds to fight cancer. The event is called 24 Hours of Booty (http:/www.24hoursofbooty.org). It started in Charlotte, NC when a cyclist decided to ride for 24 hours straight on a local bike route call the “Booty Loop” and the 24 Hours of Booty event was created. The following year the event became public and over 100 riders joined in and raised over $33,000. In 2008 after great success in North Carolina this event spread to Columbia, MD.

In the late summer of 2008 I had recovered somewhat from my previous treatment for metastatic Ovarian Cancer. I was not sure how much I would be able to ride, but I was looking forward to the first lap – the survivor lap. I wanted to celebrate my improved health and being lay claim to the title cancer survivor. I was overwhelmed by the support from my family and friends and raised $750.

One week before the event, I learned that the tumors in my lungs had grown and several more have popped up. I was devastated, but was still looking forward to participating in 24 hours of Booty. Unfortunately, the inaugural Columbia event in 2008 was cancelled due to hurricane Hannah. I was saddened that the event was cancelled and even more so very disappointed that I would not be able to ride the 2.5 mile loop celebrating myself as a cancer survivor.

Throughout this past year my cancer has continued to spread and my health has deteriorated and am now in the end stage of terminal cancer. As the Columbia 24 Hours of Booty Columbia approached (September 26 -27), I knew I would not be able to participate this year. Just one more thing the cancer had taken from me.

A new friend realized how much the survivors’ lap meant to me and contacted a local bike shop (http://chesapeakecyclesport.com/)and arranged for them to donate a pedal powered rickshaw. Owen will be pedaling me during the first lap and despite my health has made it possible for me to participate in the event and the survivors’ lap.

I am trying to help Owen with his fundraising. All funds that are raised go to Johns Hopkins Hospital, The Ulman Cancer Fund for Young Adults, and The Lance Armstrong Foundation. Will you help us raise money to help individuals affected by cancer? http://www.24hoursofbooty.org/site/TR/Bike/General?px=1192421&pg=personal&fr_id=1070

Additionally, I am hoping to raise additional funds and get other riders to commit to pedaling the rickshaw for a lap or two for a nominal donation. Wanna Help? Feel free to contact me at sonsalli@comcast.net or look for us this Saturday and Sunday.

Just one of the many gifts of life

2009-09-14T01:21:00.006-04:00

Today I was reminded of the joys of life, the gift of birthdays, friends and of a special type of love. I was also reminded of the somber time of death, but how when the pain ebbs a bit of the joyous memories that we all have.

I had the privilege of attending the birthday party for Annie, a 15 y/o rescued golden retriever. Many of you know my love of goldens and my work with the rescue. I met Annie’s “mom” when I started volunteering with the local golden retriever rescue 6 years ago, shortly after I adopted my own golden retriever Oscar. Celebrating Annie’s birthday is a wonderful thing. Not many goldens get the opportunity to reach such an age. The party was held at a local doggie day camp facility and included food for both 2 and 4 legged attendees, games, and prizes. With approximately 45 dogs in attendance it could have been chaos, but it wasn’t. It was a fun time for dogs and their families to socialize, enjoy and celebrate the wondrous relationships between dogs and their people.

I lost my golden Oscar just over two years ago. I had the privilege of having him in my life for 4 wonderful years and he passed away at 12 years old. Although he passed away, he is still very much a part of my life. I may not have him physically by my side, but his presence is around. He taught me such wonderful gifts and by being a part of my life he reinforced that life is made by the simple things and the happiness that can be found in the big brown eyes of a golden retriever.

There was a slideshow today that featured many of the attendees (furry butts and their people) and our cherished friends that could not be with us. I found myself reflecting on the many dogs that touched my life while working with the rescue and although I was sad they are no longer alive, I found myself laughing at their pictures depicting their antics. Oh the memories those pictures brought up.

As my own journey progresses, I find myself thinking more and more about death and the beyond. Surprisingly, I do not find these thoughts overly distressing. I believe it has to do with how I am approaching my own forthcoming death. I have decided that in the coming weeks I am going to start writing more and more about how I feel being at the end of my physical life. I want to share with you thoughts, decisions and preparations as well as the peace and understanding that I find as I take these steps. I hope that some day in the future you will be able to experience an opportunity to look past the sadness of my death and do what I did today, by finding the beauty and happiness and invoke the memories that we all have. As I did today with friends about their beloved dogs and as I do everyday with Oscar when I look around my house and see his face with mine on the mantle, his favorite toys sitting in his basket. He comes to visit me in my dreams and gives me peace. He is waiting patiently for me, giving me support and encouragement and he gives me peace of mind that he will escort me to heaven when the time comes.

I hope as you read this, you will think of that special person or animal that means a lot to you and reflect on those memories. Here are just a few of the memories that I have for my special boy - Oscar.

Late night musings

2009-08-24T01:20:00.000-04:00

Quick update on the medical stuff before I get to the meat of the blog.

The last two weeks have been the weeks of infections. To date I have had three; starting with an infection in my tooth, urinary tract infection, and sinus infection. I am still on two of the three antibiotics prescribed to me and I have had several different side effects the latest being nausea and vomiting. This is on top of the breathing issues and headaches and the other symptoms that come along with infections and not to mention having cancer.

Needless to say it has not been a great couple of weeks, although as throughout the summer I had some great times with friends including a girl’s night in the islands, icing a cake, birthday party, support group dinner and a nice night when a friend made me dinner and watched a movie.

I continue to be blessed by being loved by so many.

One thing that I have noticed that I have been doing often lately is talking to myself. I have talked out loud to myself before, whether it was for encouragement “You can do this”, telling myself to get a handle on things “Come on Ward, get it together“, questioning what I was doing or just the regular banter that people have with themselves.

Lately however I had noticed this at an alarmingly increasing rate. Tonight I was debating out loud if I should have another ice cream sandwich. (I did by the way) I will ask myself a question and answer it. I have even questioned the answer and in a way argued with myself. Usually these vocalizations are short, but yesterday I spent a good five minutes debating an issue, spouting out the pros and cons.

Is it caused by loneliness? It is certainly not for lack of companionship or people to talk to. Maybe my brain is so full these days that there is enough room for the thoughts to go around inside without vocalizing them. It could be menopause or even the brain tumor affecting my personality. Is it because I live alone and need to exercise my voice? (I said that last statement aloud as I typed it – weird huh?) All these things are possible. Many people have said I have always been a little “touched in the head”. I have not yet come to a conclusion, although I know I am not alone and there are others out there that have these vocal solo conversations.

A long awaited update

2009-08-10T23:48:00.004-04:00

It has been a long time since I have blogged. I could chalk it up to many reasons including being busy or tired, but the truth of the matter is writing down what is going on makes it all that more real and there is some that has not been good. Let’s cover the good stuff before we talk about the not so good.

There have been many highlights in the last couple of months. In March my family threw me an awesome birthday party. Lots of my friends came. I asked them to bring photos, memories or stories instead of gifts. I am so blessed. Some people never learn how many people love them or the impact they have made on others, but I have been lucky to have that opportunity. Maybe that is one of the benefits of going through a life threatening illness.

I had a whirlwind spring. In April I walked in a 5K which was incredible and then I went to Camp Mak-a-dream in Montana. They had a retreat for Ovarian Cancer survivors. I met many wonderful women and learned from their experiences. In May I went to the Virginia mountains with my church for a retreat. It was beautiful and a great opportunity to visit with so many friends. A day after I returned from the retreat I drove to Missouri with my parents for my nephew’s high school graduation. I was so honored to be a part of that day with him. I can’t believe his is 18 and on his way to college.

In mid June the whole family including my sister and her family from Missouri headed to the beach for a week. The weather was not that great, but the company was terrific. I love spending time with my nephews. It was a little crazy with 13 of us and 4 under the age of five. I made some great movies of me and my nephews.

After my two months of travel I was exhausted and took some much needed time for rest. I was laid off from my job at the end of April and although I miss working; helping people, interacting with my co-workers everyday and having a reason to get my butt moving in the morning; it has been good that I am not working. I have been able to spend my days resting and seeing old friends and family. My health has been getting slowly declining.

I learned in April that the cancer had spread to my brain. This has added more symptoms to my already overflowing plate of ails. Breathing has been slowly getting harder and I found out recently that it is not fluid that is adding the pressure, but the tumors growing and compressing the lungs. This unfortunately means that there is not much they can do to alleviate the pressure and make breathing easier. I use inhalers and a nebulizer a couple of times a day. The goal is to ensure my airway is as open as possible to make sure that I am getting a deep a breath as possible. I have been having a lot of numbness in my hands and feet and have notice weakness on my left side. I am not sure how much longer I will be able to drive and that will be hard to accept. Giving up my independence is one of the hardest side effects of this disease to deal with. One of the things I notice the most is my loss of short term memory along with the difficulty of finding the right words. This is probably more noticeable to me than others, but is very frustrating. Sleeping has been a struggle. It is not uncommon for me to be up until 4 or 5am. It is so lonely in the middle of the night. I have many people who love me and are there for me, but in the dark the reality of life hits you in your face and sometimes I want to be held so bad it hurts. I think that if I can only put my head on someone’s chest and hear their heartbeat, I will be able to fall asleep like a baby.

I am not sure how much time I have left. My gut is telling me only a couple of months tops. I know this is hard for others to accept, especially since I don’t look sick. I really don’t let others see how bad it is. Mostly people just see me coughing and having shortness of breath, but it is so much more.

Last week a friend and author of a great guide to young adults with cancer came and visited me. She videotaped me while we talked about the issues that young adults face at the end of life. I was a great conversation and very cathartic. I hope that by telling my story and my struggles with dying that I will be able to be a guide to others in the same situation and maybe a comfort.

I am not afraid to die, but want somehow to make it easier on all those around me. Well enough ranting for now. I promise to write more often and provide updates.

Striving for the goal

2009-04-28T01:51:00.007-04:00

Last summer when the cancer seemed to be at bay I challenged myself to start running and had a goal of running in a 5K in 2009. I might be an outdoorsy type of person and love to hike and kayak, but I am not an athlete. I have never run in my life, but something was driving me try something new. To further challenge myself I signed up for a 24 hour bike relay in September 2008. I had not been on a bike since before my diagnosis in June 2007 and was not sure I remembered how to pedal, but I wanted to participate in an event to raise awareness for cancer. Sadly the bike ride was rained out due to hurricane Hannah. Coincidently a week before the scheduled bike ride I learned that my cancer was back with a vengeance. Over the future months as I went through treatments and my health declined it became apparent to me that I was not going to run any races.

However, I did not let my disease stop me and in November 2008 I decided that I would complete a 5K in 2009. I set my goals on the Howard Life Festival in April 2009. While I knew I could not run it as previously hoped, but I was still going to participate. During treatments in November through January I became very weak and there was a time that many thought (including myself at times) that this was an unrealistic goal to set for myself. However, I was determined that the 5K was something I was going to do. I did joke that I might have to do the walk in a wheelchair, but I was going to be at the event.

Just walking in the 5K was not enough for me, I wanted to do something more for the cause of fighting cancer so I decided to join Team Fight. Team Fight is a group through the Ulman Cancer Fund for Young Adults that is committed to fundraising to advocate and educate for the cause of young adults fighting cancer while training for endurance events such as runs and triathlons. I set a goal of raising $500.00 for Team Fight and Ulman.

In January 2009 I sent out my first fundraising email and started walking every Saturday with friends around Lake Elkhorn in Columbia. The going was slow for both the fundraising and the walking. I was usually so exhausted after a slow stroll around the lake that I needed to take a nap afterwards. As March approached I had doubts in both my walking and my fundraising abilities, but I kept at it. Due to weather we had only walked a couple of weekends and I had only raised $250. I recommitted to the event. Amber, Dani and I walked 1.8 miles every Saturday and I sent out another email asking for support from my family and friends. All I wanted to do was raise $500.00 and walk 3 miles. After sending out the email, my email box became full with notifications of donations made on my fundraising web page. When I started to review the donations I realized there were donations made by people I did not know. I was overwhelmed by the support that I received. Not only did people step up to donate money, but then also signed up to participate in the event by running or walking with me.

On Sunday, April 26th I participated in the Howard County Life Festival that was sponsored by The Ulman Cancer Fund and Blossoms of Hope. For me a miracle happened that day. I completed my first 5K. There were 10 people that walked or ran the event as part of my “team” and 5 individuals that stuck with me from beginning to end. We joked that our goal was to come in last, but my goal was just to finish.

We were the last group to finish the race, but my awesome friends slowed down at the end to let me cross the finish line before them. I can’t begin to tell you what it was like to walk across the finish line. During much of the walk/race my chest hurt and I felt as though the tumors in my lungs were going to explode, but that all went away the last hundred yards or so. I considered sprinting across the finish line, but decided it was better to be slow and steady. I crossed the finish line with my arms in the air and a whoop from my mouth, but most evident was my smile.

I accomplished something that I strived to do, but there were times I wondered if I was able. I had unwavering support from my family and friends. There were co-workers, friends, and other Team Fight members cheering me on throughout the race and especially at the finish line. My finish time was 1:03:44, much better than expected. Possibly sweetest part about finishing the walk was seeing my mom at the end. She was there to cheer me on and witness my accomplishment. Having her there made it all the more special.

In the end I have raised $1770.00 - a far cry from my original goal of $500. I could not have done this without the support of everyone and I don’t mean the money, but just the attempt at doing something physical while my body is fighting for my life against this evil cancer. I will always remember April 26, 2009 as a day a dream came true and a time that determination won the day.

I have stubble!!

2009-01-22T15:26:00.000-05:00

Well it is official. My hair is growing back. My eyebrows are starting to fill in and I have stubble on my head. Amazing what happens when you don’t have chemo running through your veins.

Last night I organized a Screw Cancer Happy Hour for work. I had the opportunity to meet and talk to several other young adult cancer survivors. We shared our stories, laughed and commiserated with each other about our own personal journey through cancer.

My sister and 2 y/o nephew is coming into town tonight and staying until Monday night. I am looking forward to some quality time with them.

Next week I am going to Florida to visit my grandmother. It will be nice to get out of town for a couple of days and into the warm weather.

There is another Happy Hour next Wednesday in Fells Point if anyone wants to join me. It should turn out to be another fun night.

Precious Moments

2009-01-03T21:08:00.003-05:00

This year I made many of my Christmas gifts. I started knitting hats last year after I lost my hair. This year I wanted to give gifts from the heart and hands to my friends and family. When the gift list for my nephews came out and had hats and scarves on it, I knew just what to give them and I lovingly knitted each of the little ones a scarf and hat for Christmas.

I spent Christmas day with 3 of the 5 nephews and was able to be there when they open their gifts. The 4 y/o twins immediately put them on and laughed. One of them, Adam even walked around shrugging his arms and said he was pretending to be cold. It was such a good moment - I hope to remember it forever, filed with other precious moments in flash cubes of memories. Below is a picture of me and my nephews and their hats. Not the best picture, but the moment was priceless.

This is what life is all about - smiles and laughs.

Trying to look forward

2008-12-29T15:31:00.001-05:00

As 2009 approaches I am trying to look forward and be hopeful, but how do you have hope when you know this is your last new year’s.

I have also been spending a lot of time in preparations around dying – my will, memorial service planning, talking with hospice etc. I have been doing a pretty good job of holding it together. I still cry everyday, but not outright sobbing. I was looking forward to the holidays and how I wanted to spend my time between friends and family. Then two days before Christmas it hit me – this was going to be my last Christmas. I was at a holiday lunch at work with a gift exchange and I was having a great time. Out of the blue this wave of sadness hit me. I am working on accepting my death, but the realization that this was my last holiday hit me like a ton of bricks and I lost it. My poor co-worker had to deal with me crying in his office and in reality there really were no comforting words to say. He did tell me to concentrate on each day and not what tomorrow will bring. So for the rest of the holidays I focused on enjoying each moment as they happened and tried not think about it.

The small day to day tasks are easy and I don’t constantly question whether or not this is my last time I will experience something, but what about the big things.

So here is the big question. How do I look forward to 2009 knowing that I am dying and this will be my last New Year ’s Eve, nephew’s birthday party, my birthday etc.

I remember when my nephews were younger and I looked forward to witnessing their “firsts” – the first time they crawled, walked, smiled, said my name etc. How do I deal with the “lasts”?

One more day in the life of a cancer fighter

2008-12-18T20:43:00.001-05:00

The week started off great. I had a holiday open house on Sunday and a lot of people were able to come. There was a steady stream of friends throughout the day and at no time was there too many so I got to talk to everyone. It was nice being able to eat good food, laugh, swap stories and just enjoy the company of others. I am only sad that many of my cyber friends are too far away to have come.

Unfortunately the good times were short lived. Last week after two rounds of infusion chemotherapy I decided to stop the treatment. This drug regimen was supposed to have fewer side effects, but it seemed just as bad to me. I had bronchitis the first week and thought maybe it was the cold that was causing me to feel so poorly, but the second week was just as bad if not worse. The nausea was horrible and I was unable to work a full day on two days, which for me is a big deal since I love my job.

I also decided I did not want to do any more diagnostic scans. If the scans showed good results I would want to talk myself into more treatments which I don’t want and if the scans were bad I would feel as though the treatments and feeling miserable were for naught.

On Monday I was notified that the trial for the oral chemo was ending and although I was not officially in the study anymore I was still receiving the drugs and unless I had a CT scan that showed there was improvement to the tumors the chemo would be discontinued.

So on Wednesday I had a lung CT. I got the worse news I could – the tumors have grown and a couple more have popped up. I am still reeling from the news. I knew in my heart that the results were not going to be good which is why I did not want to do it in the first place, but I never expected the amount of growth that has happened or new tumors to appear.

On top of it all the fluid in my lungs has been accumulating again, making it harder to breathe and I have been having chest pains. The doctor decided to drain the fluid yesterday. Over 2 liters of nasty cancer cell filled fluid was drained from the left lung and just under 2 liters from the right. I can’t believe I was walking around with over 4 liters of fluid in my lungs. The doctor predicts that the fluid will continue to build up and the procedure to drain the fluid most likely happen on a routine basis to make it easier for me to breathe.

There is no way of knowing how much time I have left, but without a treatment that is working it could be a matter of months. I am all about making this time the best possible – focusing on quality of life and enjoying the little things. However, there are preparations that must be made and things to be organized, many of these things are not pleasant to think about.

The big one is one I started this afternoon. I met with someone from Gilcrest Hospice. Several people have encouraged me to reach out to them sooner rather than later to start the dialogue before it is an urgent situation. The meeting went well. I received a lot of information about how it works and the processes, it was just really hard. I cried for a little bit after she left. I do not want to think about it, I do not want to need it, but I am happy there is a service like that so I can leave this world with dignity and peace. I am going to go visit the facility, but it sounds like I will be able to stay in my own house until they are unable to manage my pain and breathing appropriately.

I still cry all the time and I am trying to accept that I will probably cry everyday for the rest of my life, but in some ways things are getting easier. Yesterday was hard - basically had a really bad day, but I was still able to work and make a difference. I am coming to terms with my mortality and trying to focus on the good things. I am looking forward to seeing my nephews on Christmas day and enjoy the wonderment of the holiday through the eyes of a four year old.

Prayers and Thanksgivings

2008-11-30T22:01:00.000-05:00

I got back yesterday from a great visit with my sister. It was so good to see her and my nephews. I laughed a lot with her and my brother in law and loved all the time I spent with my nephews. My older nephew is 18 and the young one is two. I got to play games with the older one and read books to the younger one. I have memories that I will always cherish. I took pictures of me and Tim and also got a video of me reading to my nephew. It was hard coming home and I cried on the plane when I realized that I might not see them again. There I was sitting on an airplane looking like a freak with a mask on and balling my eyes out. I am really glad that I went, not to mention it was the most laid back holiday I have ever had.

Today my church had a prayer service for me. Twenty to thirty friends took time out of their schedules just to pray for me. After a few short prayers and a psalm one of the priests put a chair in the aisle and has me come sit in it facing everyone. She then asked people to share their thoughts, prayers and thanksgivings for and about me. It was kind of hard being put on the spot and having everyone looking at me. Then people started talking and it got really hard. So many people said how I have touched their lives, the lives of their children and other youth. They talked about my dedication to youth and the people affected by cancer. They told funny stories about me and spoke from the heart. Of course I cried. Words of gratitude that I am in their lives, the courage and faith that I have and the lessons I have taught them were shared and they said how lucky they are to have known me. The whole time I thought about how lucky I am to have them in my life. Very few people get an opportunity to hear what people think about them and the good things that come along with it. When I was first approached about the service I thought it was more for others than for me. It would give people a tangible thing to do, but I realized that it was such a gift to me. I got so much out of it listening to everyone. When everyone got up to gather around me and lay their hands on me and pray I felt goose bumps. For months I have been unable to feel God. I have felt abandoned by God and very angry. Today I felt God through all of my friends. It was very special and I am truly honored.

I also finished all my Christmas shopping today. I am completely done. Every year I have the goal of finishing by Thanksgiving. Not only to miss the crowds, but so I can spend Advent preparing for the true reason of Christmas. All I need to do now is wrap presents, decorate the house, do some baking and get ready for the open house and most importantly prepare my heart and mind for Christmas.

I have been having a lot of trouble sleeping lately so I hope that tonight I will get a good night’s sleep. Tomorrow morning is the start of my new chemo regimen. I hope it will not be as bad as before and I can tolerate the side effects.

Flying off to see my sister

2008-11-25T11:04:00.000-05:00

Turkey Day
Today I am leaving to spend Thanksgiving with my sister in Missouri. I can’t wait to spend time with them. My nephews are 18 and 2 and live too far away for me to see them very often. I am taking a video camera to record me reading a story to my nephew so he has something to remember me by. My brother in law is a goof ball so he is always entertaining, plus I won’t have to fight hard to get all the stuffing and white meat I want.

Chemo
I decided yesterday to start the chemo next week. I could have had it yesterday or this morning, but determined I did not want to spend my holiday feeling like crap.

Prayer Service
My church is having a prayer service on Sunday 11/30 at 12:45 at St. John’s Episocpal Church in Ellicott City. If anyone who is local wants to come, the more the merrier.

Holiday Open House
I am having a holiday open house on 12/14 and I am looking for a few people to help decorate the house for the holidays the weekend of 12/6 & 12/7. Let me know if you are interested.

Crazy Week

2008-11-24T00:21:00.001-05:00

Well it has been a crazy week full of tests and doctor appointments. I apologize ahead of time for the long post, but it has been quite the long week. Monday I started off my morning with a 7am CT scan down at Hopkins to check to see if the chemo has had any effect on the tumors – primarily the lung. Then I went to the primary care doc and found out I had a staph infection. Monday afternoon I went to acupuncture and then to the support group.

Tuesday morning at 7:30 I saw the oncologist to get my test results back. The tumors in the lungs have not changed in size. Which is good news and bad news – It could mean the chemo is holding the cancer at bay for now (at least in the lung) He confirmed the malignant lymph nodes. Then I went to another doc to have a Thoracentesis (fluid in my lungs drained). The fluid appeared to be consistent with cancer cells and they sent it to be biopsied.

Miraculously on Wednesday I did not have any appointments. We had a “Screw Cancer” Happy Hour for work. We are now doing it once a month in both Columbia and Baltimore City. We only had a few people, but it was a good turn out and at least I got to talk to each of them.

Thursday was a bad day. I think the news was starting to hit me and just was too much to handle. I hate telling everyone the news and watching their face fall as they realize the enormity of the situation. Plus, I was just (still probably am) at my rope’s end of handling this never ending emotional roller coaster. A good friend at work realized how bad I was doing and talked to me for a while and convinced me that I needed to talk to a professional. He drove me to my church and sat with my while I talked to one of my priests. It was good to just vent and cry and let all the feelings hang out without having to try and make sure I was saying the politically correct thing or beating around the bush. With their help I realized that my moods were just all over the place and probably needed to have my medication adjusted. I called the psychiatrist and that afternoon I went to see him and he tweaked my meds. It only took a little arm twisting for me to call the doctor.

Friday morning started by a visit to the Gastroenterologist to get the results of the endoscopy and other tests I had had done. I found out that while they found no tumors or obvious lumps in my stomach the biopsies were malignant for cancer cells in the stomach lining. Joy, Joy, just another place the cancer has invaded. Anyone keeping count of the number of organs in my body now housing cancer? They also confirmed that I have moderate gastroparesis (slow moving of the digestive track) and gastritis (irritation in the stomach) Both of which are adding to the nausea which is always present. They believe the previous chemo and radiation has caused the damage to the stomach. The doctor ordered a bunch more tests, but I have decided I am done with tests. NO MORE NEEDLES or tests that could come back as bad news.

Friday afternoon I went to see a new specialist at Hopkins. Actually he was the pulmonologist /oncologist that drained the fluid in my lungs. We had a great discussion about my options and for the first time in a long time I felt like my doctor was finally getting it and hearing me. He told me the cold honest truth and he did not sugar coat it and he told me what the treatment options were and what he would recommend, but he also told me he understood if I chose to do nothing. He confirmed that I could have as little as 2-4 months if I choose to do no treatment (less if I get another pleural effusion or sick), but he suggested a new protocol that could buy me as long as a year. We talked about tests and side effects and surgery, what to expect with the progression of the disease and much more. I will spare you all the details since this already a very long post. But in the end I left the office with a big decision to make – to treat or not to treat. It is very important to me that I spend the rest of my time here on earth on my terms and have the best quality of life. Last month I stopped the infusion chemo because I could just not handle the side effects anymore. So now I have to decide what I can handle and what is just too much.

On Tuesday I decided that I wanted to visit my sister in Missouri before I get any sicker and I arranged that afternoon to go to visit them for thanksgiving. One of my biggest regrets is that I will not be able to watch my nephews grow up and I want to spend as much time with them as I am able.

After the doctor’s appointment I went back to the office and talked to my co-worker who has become quite a sounding board and with whom without I don’t know if I would be fairing as well as I am. We talked for over an hour about my options and my feelings and just the facts of life as they are these days.

Friday night I did not get much sleep. My brain was going a thousand miles a minute and all the options were spinning in my head. Saturday morning I got up and journaled for a while and wrote down the pros and cons of each of the options and I made a decision. I am going to go back on chemo. It is the middle option of the high dose, low dose or no chemo choices. Supposedly the side effects will be less than before. Some nausea, like that is a new thing (did I mentioned I had to run out of church today to vomit?), lethargy, mouth sores, and neuropathy. But in the end I decided I have to try, I can always change my mind and stop at anytime, but I need more time. Not that I feel it would be giving up if I stop treatments, but I feel like I have not played all my cards yet. I have decided against radiation, surgery and the bone marrow biopsy. I am going on meds to help my lungs, kidneys and liver and will continue with the acupuncture.

I feel better after making this decision – very much at peace with it. I know that this is entirely up to me and everyone including my new doctor that will support me in whatever decision I make, but for now I am going to try the chemo. I will call in the morning to find out when I will start – I am sure he will want me to start right away and I am not sure I want to have it done before I go away on Tuesday. Yet another decision to make. I faintly remember when the only decision I had to make each day was what hat matched my outfit, which color socks to wear, or what flavor tea to drink – oh to go back to those days. I hope to have an easier time this week and would like to say no more doctors or visits to the hospital, but I know that will likely happen so maybe I only wish for one visit.

Thanks for taking the time to read this very long post and thanks to all the prayers and love from all. It truly makes a difference.

Oh – I almost forgot – I found out late Friday that the infection is indeed MRSA and they switched my antibiotics and I will be looking like a freak on the airplane wearing a mask.

Just another day on the roller coaster

2008-11-17T15:02:00.001-05:00

I has been several week since I last updated the blog and quite a bit has been going on. First I decided on Halloween that I was not longer going to get the infusion chemo. I just can’t take the treatment anymore. I get so sick and my quality of life is so poor. I was talking to a friend that morning and I told him I felt like I was peer pressured into taking the infusion chemo and really did not want to do it. He asked me a couple of time why I was going to chemo that afternoon if I was not on board with it. As I was getting my stuff together to go to chemo that afternoon I realized that it is not how I want to live my life. Not having the infusion chemo may shorten my life, but the quality will be better. I am still on the oral regimen and I got a CT scan this morning to see if it is having any effect on the lung tumors.

On October 26th, I found a lump in my right armpit. I was hoping that it was just an irritated hair follicle from shaving and waiting a couple of days for it to go away. Well of course given my luck it did not. I had an ultrasound and mammogram last week that led to a biopsy of two lumps in my armpit and three in my breasts. The good news is the breasts are ok, the bad news is the lymph nodes in the armpit are malignant. Not a good sign. It is rare for ovarian cancer to spread to distant lymph nodes and is a sign of advanced cancer. I have always prided myself on being unique and not following the norm, but this is ridiculous.

As if that is not enough going on I got a cold last week. I was in Austin at the LiveStrong Young Adult Alliance meeting and felt awful. Things did not get any better when I got home. I woke up Saturday morning around 3am having trouble breathing. I thought it was just my asthma and took a couple hits of my inhaler. After I did not get any better I went to the hospital around 11:30. They gave me a breathing treatment and took a chest x-ray. It turns out I have a pleural effusion (fluid in the lungs) and they suspect it is cancer cells. The next step is to drain the fluid and do a biopsy. The survival rate for malignant pleural effusions is average of 5 months after diagnosis. Just to make things a little more difficult one of my biopsy sites from last week is infected. They put me on antibiotics on Saturday at the ER and sent a sample out to be cultured.

I missed my twin nephews 4th birthday party since I spent that afternoon at the ER. I know they did not miss me and I did get to see them, but I really wanted to go.

I went to the doctor today to get it checked and the culture shows that it is staph. The doctor thinks that it is MRSA and they did a nose swab and sent it out to be cultured. They also did a blood tests that may come back sooner, but is not always reliable. She put me on more antibiotics (for a total of three) and we are waiting on the culture results. If it is MRSA, they may put me in the hospital which is not what I want. I try to avoid the hospital as much as possible. It feels like the hits keep on coming. I am waiting to hear when they are going to do the Thoracentesis which needs to be done soon, but the worry is that since I do have Staph and probably MRSA the area is most likely to get infected. My blood count is low and they feel I am very susceptible to infection - like I didn't already know that.

I am feeling very overwhelmed and numb at the moment. I am also very angry that all this is happening and I am not sure how much more I can take. Why does cancer affect so many people? Why Me? What did I do to deserve this?

Radioactive Eggs and Bald Heads

2008-10-29T15:00:00.001-04:00

Yesterday was an exciting day. It started with going in for a gastric empting study to measure how fast food is going through my stomach to see if that is contributing to my nausea.

I had to fast for 6 hours which was not a big deal since it was first thing in the morning. Then I had to eat a hard boiled egg that had been somehow infused with radioactive material. This was a little tougher since I was already nauseous. They gave me gloves to handle it and was told to be careful not to get any on the floor or counter. It is kind of scary to be given something to eat that is dangerous to handle.
Then I went into the nuclear medicine room where I laid on a table that had what looked like a scanner above me. The cool thing is they had a computer screen that you could see where the egg was in my stomach (it glowed) and over the 90 minutes I could see it moved through my stomach into my intestines. It was cool and creepy all in one.

I decided on Monday that it was time to shave my head. I did not think I would have a hard time losing my hair this time since I went through it before and I did not really like my short hair, but once it started to fall out it was a different story. It was very hard to see hair on my bed pillow, bathroom floor and on my desk. So yesterday after lunch I went to the barber and got it shaved. It was very cathartic and empowering to take control of the situation. It is a little cold out, but I am just back to wearing my hats - all in all a very busy and exciting day.

Time is flying by

2008-10-27T11:55:00.000-04:00

I have been very bad about updating my blog lately. There has been so much going on, I have just not found the time to write anything. There is also the fact I have not been sure what to say.

In the last blog entry I talked about how I was struggling with the decision to start treatment and with the knowledge the tumors have grown. I have since decided to go on chemo. I have committed to one month of treatment and will then re-evaluate after tests are performed. I am also seeking a second opinion during this time. I started an oral chemo 3 weeks ago that I take twice a day and I am receiving a infusion cocktail of four chemo drugs every Friday (3-4 weeks on, one week off. They would like to give me 6 cycles of the infusions which would be about 6 months and at least 2 months of the oral chemo.

The last two weekends have not been any fun and I know it will only get worse as the treatments go on. That is one of the reason I am not sure it I want to continue treatment if we do show positive results. The quality of life is just so compromised.

As many of you know I am having trouble with my stomach and it is not just chemo related. I went to the doctor last week and he is running another round of tests to see if we can get to the bottom of this. They think there is damage to the stomach from chemo and radiation but they are not sure and if there is they want to find out how much. I had an ultrasound on Saturday and go in for a gastric emptying study tomorrow and endoscopy next week. The gastric emptying study measures how fast food is moving through my stomach. I will find out more tomorrow what all is involved but from what I know I will eat radioactive eggs and they will take pictures as it is moving through my stomach. I have had more radioactive stuff in the last month I am surprised I am not glowing.

My hair is starting to fall out again. Everyone has been complimenting on it. Saying how cute it is. I hate it. I guess I just do not identify myself with short hair and it takes a lot of work. That said it is very frustrating that every time I run my hand through my hair I get a clump on hair and I found hair on my pillow this morning. I am going to go ahead and have it shaved. I can not take it slowly falling out again. I have an appointment at a local cancer center where stylists come in, but it is not until next week and there is no way I will be able to wait that long. I think I will just go to the hair cuttery tomorrow.

On a good note, last night was the Screw Cancer event. It was a fundraiser for the Ulman Cancer Fund and it was an awesome event. It was nice to see so many people and many of my friends and supporters attended. There were many silent auction items and my friends had a good time bidding. The awesome part is that every item my friends won they gave to me. I am still amazed how generous my friends are.

Work is going great. It is such a rewarding job. No matter how bad a day I have I find I can help someone and that makes feel like I have a purpose. Two weeks ago I had a plumbing problem and then my tooth started hurting (needed a root canal) and I had my first chemo infusion that day. When I came into work I felt like I was going to crying, I could just not handle anything else that day. I received a phone call from a woman whose son was just diagnosed with colon cancer that had spread to his liver. She just needed someone to listen to her and to help find resources for them. I hung up the phone 25 minutes later and knew that that was the reason I was alive that day – to help someone else. I have had several other moments like those lately and it is such a good feeling.

Just another week

2008-10-07T18:32:00.000-04:00

Sorry I have not updated the blog in over a week. It was a busy week with lots of ups and downs. Actually there were a lot of downs, but few ups. Last week the nausea and vomiting got worse. I went to the doctor on Tuesday to check on my incision as well as the oncologist. The surgeon was worried that there was a bowel obstruction of loop of bowel caught in the incision in the abdominal wall. So on Wednesday I had to go back to GBMC for blood work and CT scan. The upside was I did not have to drink barium for this CT, but I did have to drink the vial lemonade flavored contrast shit. Unfortunately the vomiting reared its ugly head and caused me to vomit the first of the contrast. Luckily they did not make me drink the other 2 glasses of it and went ahead with the scan.

On Wednesday night the vomiting continued to get worse and I could tell that I was very dehydrated. After a very rough night I called the doc at 6:30 in the morning and he told me to come into the office and he would most likely admit me for IV fluids.

Thursday around noon I was admitted to the hospital for dehydration and for them to run more tests to see why I could not keep even fluids down. The CT scan and blood work came back normal, at least normal for a cancer patient.

They started me on some pretty strong anti-nausea drugs. The days in the hospital were fairly uneventful. I had a nuclear scan on Friday morning which showed a very normal gall bladder. At least something is my body is normal. Friday they started me on a liquid diet which did not work, but Saturday things improved and I was able to go home on Sunday afternoon.

After being seen by 10 different doctors, residents and interns the diagnosis is chronic peristalsis where as the stomach is not moving the food through very well. It is their speculation that the chemo and radiation has caused damage to the stomach. I am now taking anti-nausea meds before each meal and at bedtime. Mornings are the toughest and when I feel the worst. I have been getting up to take the Reglan then go back to bed for another hour while the meds go through my system.

When I visited the oncologist last week we talked about my treatment plan and my prognosis. We talked about why they put me on Estrogen (by the way the hot flashes are gone). The doctor said they usually do not put cancer patients on Estrogen, but since my prognosis is not good they want me to be comfortable. The doctor said I may have as little as a year to live. Not surprisingly the news did not go over well and I kind of shut down emotionally. I talked to the oncologist yesterday and we discussed my treatment options and what my prognosis would be if I did not do treatment. The good news is I am allowed to go back on the oral chemo starting next week. They also want to start infusion chemo once every three weeks. I have not decided if I am going to do the infusion chemo. It makes me so sick last year and really affects my quality of life. Yesterday the doctor said that if I do not do any treatment I may only have 3-4 months.

It is not like me to take this sitting down and not fight; I am just not sure how much fight I have left. I have committed to the oral chemo for six weeks and take things from there.

I feel bad that I have not been able to work much, but everyone has been great letting me set my own schedule and work from home. My new friends there are also encouraging me to get a second or third opinion. I am feeling pretty emotional these days and have been crying a lot. I feel like so much of this is out of my control and it is very frustrating. I am happy I have a treatment plan for the next couple of weeks.

Joy Joy it is Monday.

2008-09-29T12:21:00.000-04:00

I went to the surgeon on Thursday and the incision was indeed infected. He put me on antibiotics, told me to use warm compresses and come back if it opened up and started to ooze. Well the warm compresses helped to reduce the redness and soreness around the incision, but it also caused it to open up and of course all this yucky puss came out. I called the doctor’s office on Friday morning and they told me to come in right away. He opened up the incision to clean it out and packed it with gauze. I have to change the gauze two to three times a day. Let me tell you this has not been fun. While the infection is getting better, the incision is raw and irritated and the gauze adheres to the flesh so every time I have to change it is starts to bleed and of course it hurts. I go back to the doctor tomorrow afternoon. I am not quite sure what he is going to do, I don’t think he will stitch it back up, so maybe I will just have a gaping wound that will eventually heal from the inside out and scar over.

The good news is the doctor said I could go back to work. I went in Thursday afternoon for a couple of hours and tired myself out. Thursday night I had chills and a fever due to the infection and Friday I felt like crap so I was only at work for all of 30 minutes before the doctor told me to come back in. I am working today for a couple of hours, but do plan a nap for the afternoon.

This weekend I took it easy lounging around like a slug and watched movies. The doc put me on estrogen and the hot flashes are slowly decreasing in frequency. Don’t get me wrong, I still wake up in the middle of the night sweating like a pig. Thursday night was the worst. I had chills from the fever and could not get warm one minute and was throwing off my covers the next with a hot flash. Menopause is not fun. I feel bad for making fun of my mom for all these years. I am too young to be experiencing this. This is definitely something I am happy putting off for several years or better yet not experiencing at all.

The nausea continues and is very frustrating. I am not eating a lot and have vomited for the last three days. I have not had much in my system but medicine so it is mostly dry heaves with some bile mixed in for effect. I could not get in with the specialist until October 17th so it looks like I will have three more weeks of nausea.

I will write an update tomorrow after visiting the surgeon and the oncologist.

Hot Flashes – Yeesh

2008-09-24T19:16:00.000-04:00

It has been a little over a week since surgery. I am feeling pretty good - still a little sore, but I am off the narcotics. One of my incisions looks funny – it is red and feels hot – I am pretty sure it is infected. I called the doctor’s office today and I am going in to see him tomorrow. I think the pain that I am still having is coming from the incision. Hopefully he will put me on antibiotics and then everything will be fine. I am hoping to talk the doctor in to letting me go back to work next week. I can not imagine sitting around for 2 more weeks before given the clear to go back to work.

The one side effect that I am having that I did not expect is hot flashes. I knew they would come, but not so soon. One minute I am cold and the next I am sweating. There seems to be no happy medium. I am too young to be going through menopause. I read on the internet that surgical menopause starts right after surgery and is often worse than regular menopause. The doctor mentioned to my mom that they can start me on hormones. Since I am going back to the doctor early – lets hope that I can start the hormones early too.

I feel bad after making fun of my mom and her hot flashes for years. This is no laughing matter. My co-workers came to visit me today and I had to keep fanning myself with a magazine during the visit. I begged them to send me some work – I am so bored. At least last week I was doped up and slept all the time to be bored. The visit was fun – they had me laughing so hard I had to hold my side it hurt to laugh.

Stir Crazy

2008-09-22T21:17:00.000-04:00

One week after surgery and I am resting at home. Mom and dad took good care of me last week, but it is nice to be at home in my own bed. Surgery went well. The doctor found quite a bit of scar tissue from a previous surgery that has been causing pain. Hopefully now that it has been removed and the tumors are gone the pain will subside. It is amazing to me that everything was removed through four little incisions. Even though I do not have a big incision, I am still pretty sore. It is hard to move around, but I am hanging in. I seem to nap every couple of hours, but am not taking as much of the pain medication.

Originally I was planning to only be out of work for two weeks, but my discharge papers said four weeks. Not sure what I am supposed to do for three more weeks. I am already stir crazy sitting on the couch not doing anything.

Going under the knife

2008-09-15T09:27:00.000-04:00

Today is surgery day. I got a moderately good night sleep and I am only a little stressed. I have complete faith my doctors, I just do not know what they are going to find and I hope it all goes well. I will be staying at my parent’s house until the weekend and will not have access to email or blog. I know – it is the dark ages. I will have my cell phone with me, but will only turn it on occasionally. Thank you to all who have called and emailed good wished and thanks for you prayers. I know that this will all work out.

Catch you on the flip side.

Anticlimatic

2008-09-11T14:24:00.003-04:00

I just got back from my scan. The ending is very anti climatic compared to the prep. It was entertaining though. I was taken back to a room to change into a gown. Luckily they gave me one to use as a robe so I did not get a back draft. The technician was very nice and only made me take a couple more sips of the disgusting stuff. I then went into the scan room and they hooked me up to an IV for the iodine dye. The most exciting part was when they injected the dye I felt flushed and felt like I was going to pee my pants.

The whole thing took about 20 minutes. The only thing I have to remember it by is a band aid on my arm where they put the IV and the fact that I have to run to the bathroom every 20 minutes or so.

Now I just have to wait for the results and hope that nothing is too bad and they can still go ahead with surgery on Monday. I am ready to get these parts removed.

Yum Yum Barium

2008-09-11T12:28:00.002-04:00

Ok the second one is down. I think I started chugging too fast. I got a brain freeze from the coldness. And then I had a big puke. I took a brief break and slowly gulped that rest. Next time I only have to do half of the bottle. My cheerleaders were great. Tessa made posters: CHUG CHUG CHUG, Go Allison, and Yum, Yum, Barium! I think we might be having too much fun with this if that is possible. Hell at least I still have my humor. I wonder what the % of consumption vs. staying is for this stuff. They have to expect some portion of it to come back up. I thought I had finished chugging this bottle and looked down and there was still a sip left, so I like an idiot went back for more.

I had a boyfriend that called me "All or Nothing Alli". My motto is that if it is worth doing, you should do it all the way or not do it at all.

Did I mention I went to the dentist on Monday and broke out into giggles filling out the forms. the first question was Are you in good general health? Another was a list of all medications, but it only gave two slots, the next was list of surgeries. I started listing and quickly ran out of room and wanted to write "see addendum". Just wait until I have to get the actually work down. I am going to request laughing gas - that should really make the experience a riot.

I think I might have officially gone insane.

11:30 One Down 2 to go.

2008-09-11T11:33:00.004-04:00

For those of you who have not read this mornings blog, you might want to skip down. I have successfully downed my first bottle of Barium. I had two great cheerleaders and only purged a little twice. I chose not to do it in the bathroom because I thought the toilet would be too tempting - sorta like a self full filling prophecy. It tastes like orange flavored milk. Luckily they told me to put it in the fridge. Have I told you I HATE milk? but at least it was not warm milk. The next chugs are at 12:20 (whole bottle), 12:50 (half bottle) and the remaining half when I get to my appointment. I am a little bummed I won't have my cheering squad with me for the last bit.

I still think I should have gone for the beer bong.

Just another day on the roller coaster!

2008-09-11T10:22:00.001-04:00

I went to the doctor yesterday to find out why I am still having so much nausea and vomiting. She thinks it could be one of three things: Irritable Bowel, Gall Bladder attack or my Liver. She took some blood, a urine sample and scheduled me for a pelvic/abdominal CT scan. So today I get to drink three huge bottles of barium. Joy! Joy! As if my life is not exciting enough this morning I will be chugging what is essentially liquid chalk. The people in my office are great and they will be cheering me on with a “Chug, Chug” as I down the vile concoction.

This is just another ride on the roller coaster of medical crap. If there is a problem I might not be able to have surgery on Monday. Can’t they just go in and take out everything I don’t need….gall bladder, spleen, appendix anything that can get inflamed and is not essential to my daily life. For that matter, they should take out half my liver, one of my kidneys and go ahead take out the pancreas while they are at it. I feel like every time I see a glimmer of sunlight through the clouds the storm comes my way. UGH Just picture me as that cartoon with the storm hover over my head while the weather is perfect elsewhere. How much more am I supposed to handle? I mean – I am just as game as another to endure some hardship, but I think I am at my quota for at least this year.

The irony of today is they order the CT scan for nausea and vomiting and they give me something to drink that is sure to make me puke. What the *&^%.

She asked if I have been under any undue stress. What kind of question is that? Stress – me – no. It has been a walk in the park these past couple of weeks, getting my head around surgery and hearing the latest test results. I normally find my doctor to be bright and understanding and maybe she just had a moment of stupidity – but come on. If you looked in Wikipedia right now under stress my picture would be there.

On top of today’s adventure I am really looking forward to Sunday. I have to do bowel prep for the surgery which means a day of liquid diet, some more disgusting liquid to pour down my throat and some major time in the bathroom.

On a lighter note – my chemo ridden brain was finally able to remember that the cleaning lady comes today and I remembered to pick up the house and clean out the sink. Usually I forget and she probably rolls her eyes when she sees all the clutter on the tables and floors. One month when I had just returned from Aruba I had sorted all my laundry on the living room floor. Heaven knows what she thought when she had to pick up my underwear and put it on the couch so she could vacuum. She is a saint. She will probably faint of shock when she sees the place.

Normally I love amusement rides especially roller coasters but this one is going through the haunted house.

PS - It could be worse. I could be sitting hours of design meetings at T. Rowe.

War on Cancer Videos

2008-09-08T04:07:00.002-04:00

Well it is 4am again and I can't sleep. I did have a deep sleep from 12-3:30, it is just not enough. Today (yesterday really) was a good day. I woke up to the beautiful weather and went to church and there was a little fair going on. It was great to see everyone even though I shared my news to a couple of people all in all the time spent talking to people was joyous.

I went for a bike ride yesterday afternoon with a new friend and co-worker. It was not much of a ride. I need a break twice and all we did was a short loop around a shopping center. It felt so good to feel the wind blow across my face and know that it was my own legs that was projecting me through. There was a couple time where my legs burned and my chest burned, which is just pathetic considering the lack of distance we rode. But the factor of the matter is that I got on my bike and rode. I had been psyching up to ride the Booty ride this weekend and even though it was cancelled due to rain I decided come hell or high water I was going to ride and that is what I did.

After the brief ride, we got smoothies and talked. It felt good to talk about everything that was going on and to get a fresh perspective on things.

Now on to the most important part of the post. Thursday morning I walked into the office and there was a new little flip video camera on my desk and an email requesting that I make a 1 minute video about the way on cancer to support the upcoming cancer bill. It just so happened that night I was going to a stupid cancer happy hour in DC so I took the camera and and asked other fighters and survivors what they thought about cancer.

Friday morning I took the camera back to work, plugged it into the computer and we had great clips. With assistance of Brian (new co-worker) we edited the video and mixed a movie. We great not just one video, but two. What a fund way to spend your Friday morning. I love this job. It was great to focus on something more important then what was going on in my life.
So here is my debut of write, director, cameraman and co-producer of the War on Cancer for the Ulman Cancer Fund. Please check them out.

http://www.youtube.com/watch?v=q-L_u6dsVBQ&feature=related

http://www.youtube.com/watch?v=t8307O2GYf8

Not Great News

2008-09-05T15:00:00.003-04:00

I went to the doctor yesterday to get the news about my CT scans and blood work and the news is not good. The cancer is back. The tumors in the lungs have grown in size after previously shrinking. In addition there are more tumors in the lung and the tumor in the liver has also grown in size. The blood work showed that the liver function is down.

They have moved surgery up to September 15th, a mere week away. After surgery I will have to go back on chemo.

I am having major mood swing. If I keep busy and don’t think about it I am fine even laughing, but as soon as I start to think about it I get overwhelmed with the fear and anger.

This is so not fair. I do not want to do this again. I feel like I was just getting my life back together. I knew in my heart on Tuesday went I went for the scan that the cancer was back, I am not sure how but I felt it in my gut.

How much more am I supposed to take???? What did I do to deserve this??? I was just getting used to having hair again….Why me??

I don't want to have cancer anymore. I don't want to be sick anymore. How am I supposed to work fulltime and go through treatment again. I just started this great new job.

Cancer Sucks!!!!

Hump Day

2008-09-03T14:02:00.002-04:00

Medical Update
I went to my pre-op appointment this morning for my hysterectomy later this month. I am not sure why, but I am getting very nervous about the surgery. I know the surgery is the right thing to do and it will be a relief to get the tumors out of my body and I should be able to get some much needed pain relief. It is scheduled for September 29th. It is being done laparoscopically and is outpatient if you can believe it. I was a little worried about being sent home after surgery, but the doctor said that if I am nauseous (when am I not) or in a lot of pain they will keep me for the night.

Yesterday I had a CT scan to check on the status of the tumors. I could not get any information out of the radiologist except that there are still tumors in my lung, kidney and liver, ovaries and uterus. I feel like my body is riddled with cancer. It is not great news, but the real test will be tomorrow when I go to the oncologist to find out if they have changed size. I have been very worried about this for some reason, so please send prayers and good thoughts my way.

Love the Job!!!
Work is great. I love it here. It is a little slow right now, but I know that will change and I will be very busy. I have no doubts that it was the right thing to switch jobs. Everyone here is so nice and I have already met some great contacts and have learned about a lot of resources in just a week.

Booty Ride
This weekend is the 24 hours of Booty bike ride. Right now we are watching the weather forecast since hurricane Hanna is heading in our direction. I am hoping that the forecast is wrong or she will shift courses and we will have wonderful weather. I have not been able to get as much time on the bike preparing for the ride as I would like due to chemo. I did go for a ride the other day, but I am having so technically difficulties so I had to cut it short. Today I am going to take in the bike and get a tune up.

If it does not rain on Saturday and you have some extra time; please come out to the Gateway business park to cheer me on. My goal is 10 laps, the loop is 2.6 miles. Based on my short ride on Sunday, I may only be able to do one lap at a time, but I do have 24 hours to do it. for more information check out http://www.24hoursofbooty.org/

Screw Cancer
The Ulman Cancer Fund is having a fundraiser next month. It is called Screw Cancer and it is going to be a great night to toast life. The event is October 26th at Trapeze Restaurant in Fulton MD. Tickets are $75. I hope that you can join me and celebrate my health. I really thought that cancer was going to win the war last spring, but now I am kicking its butt and I believe I will continue to come out on top. For more information and buy tickets go to: http://www.ulmanfund.org/ScrewCancer/

New Blog
The Ulman Cancer Fund for Young Adults has a new blog and this week I wrote the posting. Check it out - http://ulmanfund.blogspot.com/

Feeling like crap

2008-09-01T05:09:00.002-04:00

It is 5am I can’t sleep, in pain, vomiting and itching from a thousand mosquito bites. The pain that was a dull ache decided to come back in sharp nail biting pain yesterday and it is driving me crazy. I have tried pain pills, meditation and deep breathing and nothing is helping. On top of it all I am nauseous and vomiting. I talked to the doctor on Thursday and we thought that my morning meds were causing the nausea, so we discontinued one and switching the others to the evening. So now instead of be sick mid morning, I am sick all night.

Basically it is the middle of the night and I am miserable. There are so many good things going on, but all I can focus on is how bad I am feeling. This sucks.

I feel so alone when I feel like this. I went to church today and cried through the whole service. I am in major need of a hug.

Finally we have rain.

2008-08-28T15:11:00.001-04:00

It was such a glorious sound through the window last night when the rain started. I could almost hear my garden rejoice for joy. It is not fun to drive or walk in, but it is so needed.

I am enjoying my new commute; it is only 5-7 minutes. I am so close I can go home for lunch or run errands if I choose. I do miss being downtown a little, but a lay in bed this morning and listened to the traffic report I was so happy I did not have to drive into the city.

Work is good. I am easily adjusting to the 9-5 hours, love sleeping in an extra hour. I am trying very hard to eat healthy. A friend came over last night and brought me dinner. We ate our salads and enjoyed each other’s company while catching up. I am back on the meals ministry. I am still so tired from chemo and I am trying to build up my strength for the surgery. The meals are much appreciated to ensure that I am eating well and have lots of energy.

Latest Happenings

2008-08-26T13:20:00.000-04:00

Sorry I have not updated the blog recently, I decided I was officially off work last week and chose to spend little time on the computer.

Last week was great. I was technically unemployed. I mainly chilled out and relaxed, but was able to get some things done around the house. I got everything checked off my list except for washing the windows. Gee I wonder why I procrastinated on that one!

On Friday I had my last chemo. They changed my anti-nausea drug this week and it made a huge difference. It doesn’t seem fair that just when the chemo is ending we figured how to manage one of the big side effects. The good news is I was queasy, but never actually got sick. This made for a much nicer weekend.

On Sunday I had trouble sleeping and woke up at 3am. Since I could not get back to sleep I decided to get up and go help out at the Iron Girl Triathlon at Centennial Park. It was amazing to see all the women athletes. I got to talk to many of the women that competed with Team Fight for the Ulman Fund and I am more inspired then ever to run a 5K next spring

Yesterday was my first day at the Ulman Cancer Fund for Young Adults. I really enjoyed being in the office with everyone. I am lucky to already know most of my co-workers. I am slowly digging out the piles of resources and brochures that awaited me in my cubicle. I have learned so much already just by reviewing the resources as I was filing.

I am still a bit nervous about the job and all that I have to learn, but I am very excited about it.

Well, lunchtime is over – back to work.

Sick of vomiting

2008-08-13T09:50:00.001-04:00

This chemo thing is really getting me down. I thought the worst of the vomiting was over on Monday, but it reared it ugly head again this morning. I guess my tummy does not like my morning tea, but this is really getting old. I guess I got spoiled being off chemo for 2 months after having it for the almost 10 months. I am trying to get excited about my new job, but it is kind of hard when I feel like crap.

I keep telling myself I only have two weeks left and then things will get better. I can survive two more weeks, right? At least I hope so.

Leaving work is bittersweet. I am looking forward to my new job, but I will miss everyone here and there is comfort in the known. Please keep me in your thoughts as I transition in this new phase of my life and try to deal with chemo at the same time.

One more week

2008-08-08T11:40:00.001-04:00

So I have one more week at work and then a week off before my new job. I am getting very excited about it.

The only other thing going on is that I am feeling the effects of the chemo. I seem to be nauseous all the time and I am very tired. I have had to take naps every day after work and I still go to bed before ten. I have not had much energy after work to make dinner, so I might see if I can start the meals from church again. Hopefully, that will entice me to eat more.

I have chemo this afternoon, but I am hoping to try and relax this weekend. I have a pool party to go to with lots of goldens, which will be nice. It is supposed to be great weather this weekend, so maybe I can take some naps in the hammock.

Update 8/5/08

2008-08-05T11:35:00.001-04:00

It is official, I signed the paperwork – I will be starting at the Ulman Cancer Fund on August 25th. I am very excited and can’t wait to start work.

Now the bad news – I started chemo again last Friday. I will have it weekly for the rest of August and then I have a four week break to rest for Surgery on September 29th. Chemo wiped me out this weekend and yesterday. I was nauseous and tired, but at least I did not vomit.

Journeys

2008-07-30T15:00:00.002-04:00

The last year has been a hard one for me and it not quite over, but I received my miracle. I am doing great and I have already lived longer than my prognosis. I will probably always live with cancer inside of my, but I have learned to accept it and trying to accept the limitations, but I have also found some joys. I will be having surgery in September and will have one more round of chemo. There is finally an end in sight. I have spent a lot of time trying to figure out the real me and who I want to be. I have done a lot of soul searching and have found a lot of inner strength. As this part of my journey ends, I am ready for another one.

After much consideration, I have accepted a job at the Ulman Cancer Fund for Young Adults as the Intake and Resource Coordinator. I will be fielding calls and emails from cancer patients, survivors and family members; providing them with information, resources and lending an ear. I am very excited about this position. It is a new journey in my life and one that I feel follows my heart and God’s plan for me. It is a risk leaving T. Rowe Price and its security, but sometimes you have to take a risk.

A friend gave me these quotes today:

Follow your heart down the 'journey of life'.
Your mission in life is not to be without problems - your mission is to get excited about something(s).
"Always do more than you are paid for, and one day you will be paid for more than you do.
"You don't work for your boss - you work for YOURSELF!
Your life will only work when you take full responsibility for your CHOICES.
And your CHOICE of VOCATION is top of the list.

"Work is love made visible."- Kahlil Gibran.

Vacation

2008-07-22T21:56:00.002-04:00

It is the third day of vacation. It is nice during the day when I can sit on the beach, relax and nap. However, twelve people can get on each others nerves very easily. My mom is driving me crazy, but I get that is the norm with family vacations. We went to the boardwalk and rode the rides yesterday. It was great riding the roller coaster with my 17 year old nephew. It was the first roller coast we ever went on 7 years ago. I am exhausted just hanging around my nephews. I wish I had more energy, but hey I am at the beach and on vacation. It could be much much worse.

Go’in down to the ocean, Hon

2008-07-19T22:36:00.000-04:00

Tomorrow I leave for a week at the ocean with my family. My sister came in from Missouri with her family, so there will be 12 of us including the little kids. I am looking forward to it, but I have my hesitations. My parents bicker a lot, and while it can be funny it can also be very annoying. It won’t be the same as relaxing on the beach in Aruba, but I will be able to sit on the beach and read. I may even make a sand castle or too. I am going to try and get up every day and go for a walk or a run, this will be nice to get a little quiet time in.

Well, I best get to packing. I am not taking my laptop, so this will be the last entry until I get back.

Life is getting Normal

2008-07-14T12:01:00.000-04:00

Not sure if I can believe it, but life is getting back to normal. Except for pain and still being tired, the days are filled with normal stuff like work, chores, laundry, dishes and all that includes. I am no longer getting meals delivered and as much as I miss the delicious meals, I am doing ok cooking my own meals. I am trying to pack lunch everyday and I am eating a lot of peanut butter and jelly sandwiches for lunch and quesadillas for dinner, but at least it is nutritional and I am eating.

I went for a walk/run the yesterday. I am walking for 9 minutes and running for 1 minute. After 30 minutes I thought I was going to melt and drop right there on the path, but I did the entire 30 minutes. I am getting there – 5K here I come.

The next step is to getting my bike together, find a bike pump and go for rides to get ready for the Booty ride.

I went back to the pain specialist/surgeon last week and had another nerve block. It is amazing how much it helps – almost instantly. It only takes 15 minutes to start and it can last a couple days. We decided when we do the surgery we will cut the affected nerves at the same time. He is planning to do the surgery laporscopically. It is outpatient and the recovery should only be two weeks. It looks like that will happen in late September.

Missing in action

2008-07-03T10:21:00.002-04:00

Sorry it has been so long since I updated the blog. Not much going on. The pain level has increased and the new medication is making me exhausted and hungry all the time. I am trying so hard to lose weight so having cravings all the time is not helping. I am working on my walking – hope to start running in two weeks, at least for a little bit. I need to get my bike serviced so I can start preparing for the Booty ride.

Have not heard anything about the date for surgery yet; I am a little anxious about that. I want to get a date so I can plan for it. I also want to be recovered in time for the Booty ride.

When I talked to the doctor last week about the surgery, I forgot to ask about the recover and whether it is outpatient. I go to the doc today for another pain/nerve block and will ask then. Hopefully I can also get a date for the surgery. That is it for now – nothing very exciting.

Getting into shape

2008-06-25T13:20:00.001-04:00

I have decided that now that I am feeling better that it is time to get into shape. I have two goals. The first one is that I am participating in a 24 hour bike relay. I have joined a team from the Ulman Cancer Fund. The ride is on September 6-7. The bike ride is called the 24 hours of booty.

http://www.24hoursofbooty.org/site/TR/Bike/General?px=1023743&pg=personal&fr_id=1051&et=IybIfRrCbwzF-qxagoCKUQ..&s_tafId=1086

It started in North Carolina on what is called the Booty loop. The money that I fundraise goes to LiveStrong (Lance Armstrong Foundation) and The Ulman Cancer Fund. Two very worthy causes, my fundraising goal is only $500. Thanks to those that are already supporting me.

I have not gotten on my bike in over a year and it is going to take some effort to get back on the horse so to speak, but I have the entire summer.

My other goal is to run a 5K by next June. I am not a runner and have not run since high school, but I have been trying to walk and I figure if I work hard enough I will be able to do it. I just have to remember baby steps.

On the medical front, I met with the doctor yester day and I am going to have a hysterectomy this summer. The doctors have conferred and they feel I am strong enough and it is the next step in my recovery. I am actually ok with this and think it is a good idea.

Back to earth…..and to work

2008-06-17T15:27:00.001-04:00

The trip home was very eventful. The flight on Saturday night was cancelled due to the thunderstorms and we ended up spending the night in the Newark airport. We were re-booked onto a flight into Dulles Sunday afternoon. So the good news is we got home safe, the bad news is our bags did not make it back with us. After arriving at Dulles we were told our bags were at BWI. My parents drove us up to the Baltimore airport and we discovered that only one of Sara’s suitcases was there and the other had not left Newark yet. Yesterday one on my bags was delivered to my house, but the other one was sent to Sara’s. As of last night we did not know where Sara’s other bag was, but it was delivered to her this morning and mine is in transit to my house as I write this.

The good news about not getting your bags with you right away is you do not have to unpack and there is no laundry to do. But I hope that my other bag is home when I get there, because I am running out of clean underwear.

The trip was incredible and we had so much fun…..but now I am back at work. Yesterday it was rough having to put on real shoes and get up early. Today is hard just being inside and sitting in desk chair. Getting back to the real world is tough….

Rain Delay

2008-06-14T19:59:00.000-04:00

Sadly our trip has come to an end or is almost. We are currently sitting in the Continental’s Presidents Club due to a rain delay. Our Flight was supposed to leave at 8:20pm is now scheduled to leave at 10:58pm. At least we are not scheduled to be on the plane that was hit by lightning while landing here in Newark. Let’s hope the storm lets up soon.. It looks pretty bad out there so I am not sure the flight will be taking off at all. The good news is because we are flying First Class we get to wait out the time in a plush environment with free internet.

Sunsets and More

2008-06-13T13:20:00.001-04:00

Last night we watched a spectacular sunset. We then we went to dinner that had table top grills. It is not unlike a Japanese steak house, but you grill the food yourself. It was very good and a lot of fun. We met a nice couple from Mechanicsburg, PA. I have been surprised how many people we have met from MD and PA.

After dinner we went to the casino and Sara struck the jackpot at the slots and won $200. All in all a very good night. I am still going to bed pretty early. Last night I hit the sack around 10pm. Sara stayed out a little later and took in the night life. I just don’t have enough energy for that.

This morning we went to our last visit to the spa. Like the others it was fantastic. The start out by offering you champagne or wine, then soak you feet in hot water before taking you to the room. Today we had the Aruba Diva massage which included essential oils. Sara and I were in the same room this time and at the end we both just wanted to fall asleep we were so relaxed.

I can’t believe this is our last day in Aruba. It has been a wonderful vacation. I wish I was feeling stronger and did not have any pain, but I have enjoyed the trip immensely. Now it is time for a nap….

Oops - forgot to blog

2008-06-12T17:53:00.000-04:00

I realized while I was sitting by the pool that it has been several days since I updated the blog. Time does fly when you are having fun. Here is a recount of the last few days.

Monday: Monday we took it easy and went to the spa in the morning and then went to town in the afternoon. The massage was great and wandering around town buying souvenirs was fun too.

Tuesday: We got up early and staked out a spot on the beach with a thatched umbrella and took it easy. In the afternoon we joined the pool activities and tye-dyed shirts. Tuesday night we went on a sunset sail. Unfortunately the weather was not cooperating and it was overcast so we did not get to see the sun set, but the sail was great. The wind was strong and I got soaked sitting on the front deck when a huge wave washed up.

Wednesday: We went to the butterfly farm. It was awesome to see all the butterflies, so many pretty colors. I took lots of pictures and posted them. I did not feel real well yesterday and took a nap for a while in the room and had another massage. That helped refresh me and we sat on the beach for the rest of the afternoon. The nightly show was water ballet – it was cool to watch the synchronized swimming. I could never do that.

Thursday: Today we went back into town for some more sightseeing and shopping. We came back and relaxed by the pool. We played bingo and then took a nap in the sun. It was such a wonderful day. Tonight we are going to watch the sunset before we go to dinner.

Time is going by quickly and we only have one more full day before we have to go back home. It really has been a great trip

Tour of the Island

2008-06-08T18:52:00.001-04:00

Today turned out to be a great day. I did not feel that well this morning. No, I did not drink too much last night. Today was a much warmer day, although it is nothing compared to what you all are experiencing. After being in the sun for about 2 hours, I sat in the lobby for a while and read. It is covered, but still open to the breeze so it was very nice.

This afternoon we went on a jeep tour. It was pretty cool to see different parts of the island and to hear the history. The best part and worst part of the tour was the natural pool. It was the worst, because the dirt road was full of ruts and was very bumpy. I knew it was going to be bumpy, but it got very rough a couple times and I was taken airborne. The natural pool was spectacular. It is surrounded by rocks and filled with beautiful fish. There are 88 steps that can be a little steep to get down to the pool, but once we were there the whole trip was worth it. The water temp was perfect, the pool calm and the snorkeling was great. Since the snorkeling the other day turned out to be a bust for me, it was very nice to have some good snorkeling.

I was not so sure how I was going to do with the steps on the way up, but I did remarkably well. It felt great to come back to the resort, get a drink and take a shower. Yes, I got the drink first; a girl has got to have her priorities set.

Well we are starving and off to diner. I will download today’s pictures later. Miss you all, but having a great time.

Sleepy Sunny Day

2008-06-07T17:15:00.001-04:00

I think Sara is a little amazed how much I can sleep. Last night I was exhausted and went to bed early. After sleeping for 10 hours we went to the beach all day. Since we got a lot of sun yesterday we sat under a thatched umbrella. It was nice to sit outside looking at the beach and be in the shade at the same time. I spend the day reading and napping. Such is the life. Our toughest decision today was whether to go to the beach or the pool. If I am not careful, I am going to get spoiled.

We went to the bar today and I found a new favorite drink – It is called a “Brown Lady”, but if a girl asks for it, it is called a “Brown Man”. It is a mudslide with coconut and very refreshing.

Tonight we are dining at one of the special restaurants at an adjoining resort. It is reported to have great food. I have not decided if I am going to be a curly red-head or blonde tonight. Last night I was a red-head, but the night before a blonde. It is fun to be able to have a new “look” everyday.

Day three update

2008-06-06T18:24:00.000-04:00

It is our third day in Aruba and I am relaxing and resting a lot, and having lots of fun. Last night we had dinner at one of the nicer restaurants in the resort. The waiter laughed at me when I ordered two desserts, but we are on vacation. When we ordered coffee and Baileys he talked us into a special surprise drink instead. You sure could taste the alcohol. Speaking of alcohol, I was very good today and did not drink until at 2pm. Considering the bars open at 11am, I think that is an accomplishment. We went on the snorkeling happy hour sail this afternoon. The view was breathtaking and the water temp was perfect. The only problem I had was the water was very rough and I am just not strong enough to swim against the current very long, so I only snorkeled for a while and then went and laid on the deck of the catamaran.

We went to the casino the last two nights. Sara is up $13.00, I am down $30.00. Oh well, someone has to lose right?

Tonight we are going over to the sister resort to eat and walk around. I don’t think it will be a late night for either of us. The day on the boat has worn us out, even if I did take two naps today.

Ahhhh……Aruba

2008-06-05T14:26:00.001-04:00

We arrived in Aruba yesterday afternoon and I can say that if the rest of the trip is like the last 24 hours, we will be in heaven. The trip here was uneventful, unless you call first class an event. It was nice, especially being able to recline the seat almost the whole way back. It will be hard to fly in coach again.

We have a nice room overlooking the ocean. Yesterday afternoon we went to the beach…..what a beautiful beach. I will take some pictures and try to post them. The water was refreshing, a little cold at first, but we warmed to it. It is so blue. It feels a little weird to look down and see your feet.

I was a little queasy this morning after breakfast. I think it had more to do with the heavy food than the pink panthers I had yesterday. :)

We booked some excursions for next week and this afternoon we are going to the spa. It is absolutely beautiful here and we are having a great time.

This day can’t go fast enough!

2008-06-03T10:36:00.001-04:00

I have one more day before my trip. I am almost all packed and have way too much energy and way to anxious to be at work. The day seems to be dragging on slowly. I got up this morning and got our boarding passes and even made my bed before work. I have never packed this early for a trip and almost never make my bed and certainly not before work unless my mom is coming over.

I went to the doctor this morning and he said that I am glowing with happiness. I went to the travel agent yesterday and picked up all the travel documents and I packed them with my passport in my carry on bag. The only thing I need to do is make a copy of my passport before I leave just in case.

I still can’t believe that someone gave me this trip, it is so exciting. This person(s) is truly wonderful.

I guess I should get back to work. I have to leave for an early lunch to get my first pain block today. Hopefully it will help and I will feel good on the trip.