Photo courtesy of Chuck Arlund. Pre treatment head shave.
100 day countdown. This is my best attempt to help everyone understand this scifi trip we are on and to say thank you for all my support. So many people in my life have stepped in to help and just shine on us. I am forever grateful.
Day zero – the day you get your new cells. Think of it as rebirthday. A fresh new immune system that needs to develop and grow similar to that of a newborn baby. No immunity to chicken pox, or any of the thousands of bugs out there. Very vulnerable. Mine was June 21st, you can start shopping now for next years rebirthday gifts :)
Day 1-30. My particular transplant required about 30 days of in hospital care. Iv meds and daily blood work to maintain my body in an environment that the new cells could survive. And of course the quarantine . You are isolated to a special floor and very limited to what you can do, what u eat and who can see you. Many days staring out the window and trying to remember what season it was and what it might feel like. I would love to hear it rain, it was the only time I could get a sense of the outside world. The sounds and lights from a storm were senses I still had behind glass.
Day 30+. I’m not sure there is any way to really be prepared after a bone marrow transplant, but so far Pierre and I have managed to navigate the process. after my initial 30 day hospital stay I was sent home to begin the out patient portion of my treatment. It took some time to make it all click, making sure my meds and blood counts were being monitered on a regular basis and understanding scheduling was challanging. I won’t lie, I felt very lost in a sea of doctors and nurses with a different face each visit. I didn’t have the security of one doctor that was watching me and following through, its more of a clinic or team effort. Whoever you get that day is who you get. Things started to get missed, and I started getting scared. What have I done! There is no going back after the decision is made and you can’t just walk into any doctors office and ask for treatment. A few phone calls and conversations later we feel that things seem to be going much better. I have managed to find a few key people that are making the effort to stay with me as I navigate, tests, appointments, home health care, drugs that can cost $10,000 a month without the right paper work. Uggggg, not for the faint of will. I am grateful to them all.
Throughout my fears, my body has been responding very well to the transplant and my numbers continue to improve. There is nothing better than being home to recover. Eating, sleeping and being with loved ones is paramount in gaining back the strength that is lost during a month long hospital stay. I have had a few things come up, but over all I feel stronger everyday.
On day 30 I received a dna test to see how much of my bone marrow was donor and how much was my own trying to grow back. We are not interested in seeing mine come back around. Mine had its chance and did a fairly epic fail with the leukemia. The goal is a new immune system that will keep the leukemia from returning. So I passed my first test with flying colors! 99% of my cells were engrafted donor, much more than even expected. We had a little celebration and it was a beautiful day. I felt like someone gave us a key to our future. Pierre is my caregiver and my soul. He is all in this with me, to be able to look at each other and plan a life is the light we needed. Every day he reminds me, we have a future don’t give up. When I have a bad day and I just know I can’t take anymore, he holds me and reminds me it will pass. I will have a good day and remember its all worth it. On really good days he reminds me to take it in, dont forget how good you are today and keep this memory. Its important to keep your head on, and just as easy to lose.
Today I am somewhere around day 68. Two thirds through my post care of out patient visits, special diet, disinfecting everything daily, wearing masks, limited human contact and meds. Ohhhh the meds. I try to imagine that my pills are just giant colorful cupcake sprinkles. It actually works. Its only one of the coping visuals that I have come up with to get through.
The Count from Sesame Street has somehow managed to join as part of my care team . I have never been a fan a needles- ever. Ewwww gross. This has not cured me of that fear, but I’m getting better. My go-to meditation during any poking and prodding procedure had been to close my eyes and count. I had learned this in lamaz meditation classes long ago with my birthing classes and later in yoga. The theory is that our little brains can only do so much. If we can distract and focus on something enough, the rest will fall into the background. This really works for me, but as anxiety grew I had to step it up. It started with just counting on my fingers and forcing my brain to visualized the numbers. Then one day during a particularly difficult test the numbers were not enough. Suddenly the voice from sesame street crept in. “One batty batty bat, ooooo haaaa” , ” two batty batty bats” . Seriously! Im laying on my side with my eyes closed and my fingers in the air most likely mouthing the words from a sesame street character while I am getting a bone marrow biopsy. You know they had to think I was, yes I’m gonna go there, bat shit crazy.
As much as it all sounds we have daily love and laughter and make the most of it all. I have some new fuzz for hair that is fun to rub and Pierre is dealing with regrowth from his sympathy shave. He stayed bald with me most of the time. I missed his long hair so have been discouraging a hair cut. We will see how long he can tolerate it.
As it turns out Robin Roberts from ABC news had the same transplant procedure, and I found a great article online that explains the process. click the following link if you would like to learn more ABC news article explaining Robins BMT process
Photo courtesy of Pierre Vreyen. Gale’s visit