Saturday, October 24, 2009

Reflections

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