Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. This is how the leukemia journey started.
“Rachel, your recent labs tested positive for a rare blood cancer. Sit down and take a deep breath. You’ll be seeing a hematologist/oncologist in two days. I’m so sorry.”
These were the words I heard in a phone call from my doctor on Tuesday, July 18th, 2017. I did sit down and looked outside at the beautiful July day and I started laughing. For real. I mean, seriously? Then, still laughing, I thought, bring it on. I’d already survived years of extreme pain from an MVA at 17 that should have killed me. My birth made medical history. I’d had 6 major abdominal surgeries, almost died of sepsis, and had countless other hospitalizations, minor surgeries and procedures for the past 5 years. I have gastroparesis, endometriosis, a TBI, multiple herniated disks, severe chronic pain, and on and on....Adding Leukemia on top of all of that just seemed funny. I sat there in my underweight, weak, tired body, barely recovered from major surgery and sepsis and truly thought leukemia had nothing on me. I’d keep living until I didn’t. I’d appreciate every day. I’d still do my best to get stronger and to play the piano again. I wasn’t afraid to die.
Five months later, after trying the “usual” treatments for Chronic Myeloid Leukemia and ending up in the hospital for weeks on end, plus two trips to specialists in Portland, during which I was told “You won’t survive a transplant” which is the only potential cure, I sat in my hospital room and I wasn’t laughing. I still wasn’t afraid to die. I was afraid to keep living like that. I was broken in every possible way. I was also very very alone. Chronic illness can leave a person isolated and feeling less than human. I had a stuffed cat and a soft blanket and I was done. Numb. The attending physician told me I needed to really start thinking about enjoying my life, but I was empty. It was like watching a stranger.
That was almost two years ago. Since then I have tried and “failed” every option. Even options that my oncologist didn’t really want me to try because the side effects were so brutal. Failure meaning they didn’t actually work. My tumor marker never went down but my good immune cells dropped too low causing severe immunosuppression which required more painful treatments and isolation. Chemo injections, interferon injections, chemo pills and finally the reality of the specialist in Portland that “I have nothing left to offer you.” Sobering words. I would have possibly two years to live and then an excruciating death as the cancer cells took over all the healthy cells in my blood. I was ready to accept that. I was so tired. My body was like a foreign object.
At some point during this journey, I moved to the Oregon Coast to be closer to some family and friends and the ocean. To be less alone. Also, so I could try to help with the local choirs as I had done years ago. I started volunteering to help which led to actually being given the honor of playing in part of a concert last May. It had been 5 years since I’d played in public and I was terrified. I honestly don’t know how that performance happened. I feel like someone else who is strong and brave and healthy was sitting in my body rather than me. The best part was that I actually felt like I was part of something for the first time in years. The days spent in the classroom getting to witness those young people from vastly different backgrounds come together and make beautiful music fed my soul. It gave me hope and a renewed sense of possibility. The honor of being able to share a short part of their musical journey was a gift those students gave me that I never thought I would have again. It busted open every possibility. What if my life still could have value? What if I could make a difference? What if I could share music again? I sat on my porch that night alone again, but feeling so connected, and cried because I knew that I was willing to endure any physical suffering if I was capable of that joy. That connection. Isn’t that what life is really about?
Tuesday, October 2nd I will report to the Seattle Cancer Care Alliance for a bone marrow transplant and begin a journey of 120 days to cure my cancer. Let’s say that again. To CURE my cancer.I’m considered high risk but the doctor said that once he met me, he would definitely do the transplant. My big brother Craig is a full HLA match and is graciously willing to donate his stem cells to save my life. Essentially my bone marrow will have to be destroyed and his will then hopefully come in and replace it without too much fighting. Massive chemo in a short time and full body radiation will definitely be a challenge but graft versus host disease could be my bigger foe. Due to my history of GI surgeries, I’m at high risk for GVHD to be fatal. It mostly attacks mucous membranes, including the GI tract and inside of the mouth. I’m already dangerously underweight and have had two surgeries to remove parts of my small intestine, so this is a very real and very serious concern. Let’s hope Craig and I have gotten over our childhood arguing and his cells play nice. This will be a challenge for my body and my spirit. I’ll be isolated with no immune system, away from my home for 4 months. Away from my cats and piano and anything comforting and familiar. I’m scared. Overwhelmed with planning and then moments of intense peace that I chose this and I found a doctor to try and save my life. It was and still is my choice.
I could have accepted what the other specialists said but I chose this path instead. Yesterday my tumor marker test came back at 100%. I’m also getting dangerously immunosuppressed. I look at my veins. These hands that can play music and plant flowers and I know they’re full of cancer. I want them back. I want to play the piano again.
This transplant will be very very costly. I’ll be paying for housing in Seattle for 4 months which is the biggest expense, plus my bills back home at my house. Right now, I just have disability income. I’ll have to have a caregiver with me at all times so there are transportation costs for the caregivers and for myself. None of the housing or travel or caregiver expenses are covered by my insurance. I also need dental exams and cleanings to make sure there is no risk of infection in my mouth and new glasses because I won’t be allowed to wear contacts and none of that is covered by my insurance. I’ll need pajamas, blankets, hats, special mouthwash, detergents, sheets, a phone that works, etc. I’ll also appreciate lots of emotional support. Cheering on from a distance or in person. I’d like to have money to rent a keyboard there so I can keep my hands in shape for when I return. I’d also dearly love to go whale watching prior to the transplant. It’s a dream of mine to see the orcas in the wild. At this point, I’m not entirely sure of the total costs because they will change as things go along.
I’m planning on making a wishlist of specific things people could send that I’ll link here eventually, including grocery gift cards to close stores for caregivers and iTunes gift cards for music. For now, I wanted to get this written because it’s been a rollercoaster and I’m extremely weak from chemo. Going from “You won’t survive a transplant” to “I’m definitely willing to try but it’s very risky” is a bit of a stretch in my brain. Again though, I am choosing this.
Please know I will be filled with gratitude for every dollar and encouraging word and good thought and visit. Every item on the wishlist. Every one of you who is still reading. I’m doing this transplant so I can actually be that person who played in the concert. The strong person who can be part of life and music. That person who is still out there just beyond my grasp who can live the life I dream of. The person who is brave and dearly wants more than anything to make a positive difference through music in this world.I hope we can all find the person inside each and every one of us who knows without a doubt that life is beautiful and messy and painful but if we choose to embrace all of it, even the fear and grief and pain and loneliness, each moment is an opportunity to be human and to love and to connect and to live. Let’s all live this moment.
