Tuesday, December 29, 2009

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

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.

Monday, December 14, 2009


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

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
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

Here is a link to the video.

Monday, December 7, 2009

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

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.

Thursday, November 26, 2009

My Thanksgiving Thoughts

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

Saturday, November 7, 2009

Leaving Home and Leaving a Part of Myself

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.

Saturday, October 24, 2009


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?

Sunday, October 11, 2009

Are You Welcome in the Cancer Club?

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

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

Wednesday, September 30, 2009

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

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

Tuesday, September 22, 2009

Help me celebrate cancer survivorship and raise money for cancer

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.

Monday, September 14, 2009

Just one of the many gifts of life

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.

Monday, August 24, 2009

Late night musings

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.

Monday, August 10, 2009

A long awaited update

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.

Tuesday, April 28, 2009

Striving for the goal

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.

Thursday, January 22, 2009

I have stubble!!

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.

Saturday, January 3, 2009

Precious Moments

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.