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.

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?

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

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

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.

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.