It’s been 32 days since my “Birthday” (Bone Marrow Transplant) on June 20th, 2019. I can understand now why they say that each bone marrow transplant patient is different. We each handle the effects of heavy-dose chemotherapy, irradiation, immunosuppression, multiple transfusions, and all of the side-effects & symptoms differently. I can say, definitively, that your outlook and determination has a strong bearing on your recovery. I credit my relative youth and persistence to my quick recovery.
How we address ourselves and our mindset has an immense effect on our health and recovery. In the our daily and hourly thoughts where we grouse to ourselves that “we’re tired, we’re worn out, this is exhausting” the body internalizes our thoughts, our health and personal energy match our mental attitude. I have to catch myself in such times when I’m quick to complain or be frustrated with my health and recovery. I change what I tell myself, reminding myself that I love my family and friends, that they are rooting for me, praying for me, supporting me, and that I so badly want to go home to my family, friends, co-workers, and rewarding job again.
People ask me what to expect with a bone marrow transplant. I routinely ask oncologists and other patients the same questions. People are still asking me as patients, families, and caregivers struggling with their own journeys. This is is my attempt at answering those questions.
Chemotherapy is rough. You WILL lose your hair, it’s not a matter of IF but WHEN. If your body image has you loving your hair, try to find and do new things to make it easier for when that time comes. Whether it’s sharp and stylish “dew rags”, a jaunty hat, or a fierce shorn look, try to exert control over your situation and assert yourself rather than being unpleasantly surprised and overwhelmed.
My original hair loss due to maxi-dose Cytoxan involved a Stephen King-esque scene where my hair came off in massive clumps as I showered a week after my first chemo. I felt like I was going to have a heart attack in the shower as I watched my dark hair come off in clumps in my hands. I immediately screamed for my wife, we calmed each other down, and I shaved my head after that experience.
Immunosuppression and Irradiation are rough. You will vomit, dry heave, and have diarrhea. Prepare yourself for the worst. Prep a “puke bucket” that will be your friend and companion some days and evenings. Use anti-emetics such as Compazine, Zofran, and Ativan around-the-clock so that your body has a constant protection against nausea in your system. You will need to “titrate” (slowly scale yourself back) off these drugs once you know you’re over the worst of the effects of NVD (Nausea, Vomiting, Diarrhea).
Expect swelling, dry mouth, rashes, redness, and sores. Brush your teeth and use mouthwash often. I use Biotin as a toothpaste and mouthwash with a very soft toothbrush after every meal and before bed. I use Burt’s Bees and Farmacy Honey Butter on my chapped lips. I sometimes wear athletic compression socks to deal with my swollen ankles and legs. All of these effects are due to the chemo, irradiation, and immunosuppression your body is under.
And in other news….
My first 30-day Chimerism Analysis was taken last Thursday, June 18th. I’m eagerly awaiting the results and to discuss it further with my Johns Hopkins oncology team… hard to believe it’s been over a year since I was first diagnosed with Stage 4 Mantle Cell Lymphoma (MCL), but I truly hope and pray this bone marrow transplant puts me into a full recovery and remission.
Allogeneic hematopoietic stem cell transplantation (HSCT) is an effective therapeutic approach for several hematological diseases. Chimerism studies can be helpful to assess donor engraftment, detect early signs of graft rejection, and monitor minimal residual disease. Currently the most common method for monitoring chimerism following HSCT is by PCR amplification of STR loci followed by capillary electrophoresis. Prior to transplantation, multiple STR loci in both the donor and recipient are analyzed in order to identify loci that differentiate the two individuals. Informative loci are selected to calculate the percent donor and recipient present in post-transplant specimens. This is a rapid, sensitive, and cost-effective method for monitoring chimerism in patients following HSCT.
Hi Ken, this post was very interesting. My wife, Susanne, was a biologist at Children’s Hospital Research Center in Oakland. She used to do this type of work. She’s done literally hundreds, if not thousands of PCR amplification routines and analysis. I also saw this work performed at the Genomics Lab at Berkeley National Lab when I was the Dept. Head for Scientific and Technical Information there. The work has thankfully become very automated in the last fifteen years, making the technology more available and cheaper.
Thanks, Aunt Jane. I’ve seen friends discuss and explain PCR, but this is the first I’ve seen it first-hand.
I posted my results as:
https://tayledras.com/day-35-results-from-chimerism-analysis/