Thursday, November 10, 2011

A Beautiful Soul Leads to a Purpose of Advocacy

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 5th 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

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

Tuesday, October 11, 2011

Words That Define Us

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?

Thursday, September 22, 2011

First Descents: Life Challenges, Lessons Learned

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.

Sunday, August 7, 2011

The effects of being in nature

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. 

Friday, July 22, 2011

I'm still here!!!!

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.

Saturday, March 12, 2011

Name That Fish

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)

Friday, March 11, 2011

Loss of a home and losing a piece of myself

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.