Day 80 Protocol explained and scheduled and Survivorship Care
I've said it before - the Holy Spirit has been so kind in the way He has brought just the right person at the right time to help me and be with me throughout this process. I have just had 4 days with my vivacious, fun, productive, and loving dear friend, Michele. We are planning a RV trip with our hubbies to see the fall colors, historical sights, and many other fun adventures this Fall. She planned and I chimed in once in a while. We marveled at how perfect it was to have this time together to focus - when we didn't know before if I'd be up for it.
My hubby was busy "taking a break" from our little apartment. He spent a day with the grandkids at their house and had them at our house for a few hours. He even colored Easter eggs with them. He's so special.
Michele went with me to my appointment with my Survivorship - also called Post Allo Transplant Nurse, Rachel. I had my usual list of questions. The coordinator had a pretty extensive presentation about what they do to follow me from here on out. As part of their "Day 80 Protocol," I have a PET Scan Monday and they want me to have one every 3 months for the first year - then spread them out. I have a Bone Marrow Biopsy Thursday and I get the trifusion port taken out. Michele, a nurse herself, asked what the bone marrow biopsy was for at this point. I always assumed it was just checking for lymphoma cells. At this point we hope for none! The coordinator said they are looking for cancer, of course, but they are also looking to verify that the DNA of the donor had taken hold. We clarified in surprise; I will be retaining the donor's DNA in my bone marrow and blood. Michele joked that I could commit crimes and pin it on my donor. How weird; I plan to read more about this.
I also have a lung function test to make sure there has been no damage done in this process and a check-in with the psychologist who works just with transplant patients. I mentioned the amazing support I have and the nurse there talked about the people he has observed to have very little support. I just can't imagine how lonely this long process would feel without my caretakers and all of you!
The coordinator reiterated that I need to have very specialized care for at least the 1st year so they are my contacts for everything medical, especially gynecology. We made an appointment with one of their gynecologists. No eye doctors for a year because eyesight can change so much this year.
As I've mentioned before, I'm supposed to get all the vaccines recommended for kids starting 1 year post transplant; that should give me time to research which ones are right for me at this age and all.
I can't wait to go to our chiropractor. My shoulders are really bothering me; I have exercises from the physical therapist but suspect Stemwave, a new treatment they offer, could help a lot. I've checked and this is OK.
Onward and upward. God bless and keep you!
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