My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Those early days of transplant seem to go by slowly when your goal is that far off number of 100 days. But each day is important in the journey. Just like the old proverb: “A journey of 1,000 miles begins with a single step.”

Those daily trips to Station 94 help give reassurances that everything is on track and also that you realize David is being well tended and cared for during his transplant stay. The underlying, visceral feeling of confidence permeates not only the hallowed halls of Mayo Clinic, but trickles down to the doctors, nurses and auxiliary staff who dedicate their lives to making sure their patients have the best possible outcome.
Thank you for the update and give David an airhug! 😉

I so agree. David has the transplant team that is there solely to care for transplant patients. They are ready for anything, which is why we must let them know how we feel. I was someone who never threw up. Not for 40 years. Carboplatin/Taxol and the Red Devil I never got sick. Zofran did its job. Transplant time and Melphalan/ Cytoxan infusions were no match to Zofran. Much to my dismay. Like modesty, i have learned it just is. Bodies let liquids out and the transplant nurses and Doctors have seen a lot. The kindness I got from the night staff was comforting. A DR was within reach all the time to approve a med or some other request.
I so agree with Lori. On my Floor 6 at COH they had activities. I so enjoyed the two who led the activities. One of them particularly i had many good conversations with. She saw me with hair, then without. She shared resources and more. The journey from Day 0 is amazing. Reminding me it is a day at a time.
Prayers each day is just a little bit better than the last.

Hi Mary Lou, just checking in to see how you’re doing! I’m sure you’re getting a little antsy, nervous, excited, apprehensive…all of the above! 😉 I hope you’re all settled in now at your lodging. Was this a week of re-testing for you?
Are you still on target to have your central line placed on Aug 29th?

Hi Lori,
Thank you for reaching out. There was a date change due to the Labor Day Holiday. My new arrival date is Sept. 4th with my stem cells on Friday the 13th. I'm getting antsy, but I'm keeping busy trying to get everything organized. It can be overwhelming moving for a month or so. I also have a special needs daughter that I have to get things in place for as well. Like they say it's a " Marathon not a Sprint."

Oh goodness, you have a lot on your plate right now trying to get everything lined up for this transplant. I can’t remember if I posted information for you about what to pack long term and also some resources for what to expect during transplant.

The first is from Mayo. It’s divided into sections. Of course this is for patients having a transplant at Mayo, but most hospitals follow similar guidelines. There are a few differences but the basic information is there:
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigation
This from Memorial Sloan Kettering:
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant
This link is to a good discussion on what else to pack for long term stay: https://connect.mayoclinic.org/comment/703859/

Will you be in the hospital for the month stay or did you need to find lodging off site?

Thank you Lori

MaryLou99
I found this site early on, and although i had mine at the City of Hope in Duarte, everything Lori provided helped me prepare and to ask questions i never thought to ask!!! Take each task at a time. Ask your trusted friends for help. I talked with a good friend about my BMT and she asked if it was ok to share with the other ladies. I know 3 or 4 live alone. Within a day my friend called to say i could stay at her house. Not everyone will help, for whatever reason. I have many stories on those folks. I just know if we do not ask, they will not be able to say yes.
Enjoy these August days. There is a flurry of things to do with the transplant team when your sept date arrives.

Today i noticed that my hair has reached a noticeable growth stage. What struck me today is how dark it looks.
All my life, I was the little red-haired girl. As an adult the same thing. My hair had gotten lighter and some grey, but still red. I was also one who had and has a lot of freckles. I knew my hair needed to grow back for me to understand how i would feel. What if it is brown? Or grey? I never dyed my hair. It was not necessary. Today I thought about acceptance. I just do not know. I liked being a red head. Unique.
Freckles? They do not go away. I will have those forever. I may never get more, but i have many that will take a long time to lighten.
I had already had my transplant when the RN who was part of my discharge team said I will likely have my donor's hair color. OMG i thought. I believe had i been told this from the gate I would have known my life is what is a stake. What is hair? It is ok to mourn the things we lose. They are our body parts. Part of our everyday lives for a very long time for many of us. I will need for it to grow for a few more months until more is clear.
More will be revealed on this life- long transplant journey.

Good morning, @katgob. Congratulations on the hair growth!! Always a momentous occasion to see more than noticeable fuzzies on top of our heads!

Not sure where the RN, who told you that you’d most likely have your donor’s hair color, got her information. As a bone marrow recipient, your blood cells will contain the DNA from your marrow donor, while your epithelial cells contain your own DNA. There is little evidence that the donor DNA combines with our own genomes. There are some anecdotal stories of cells showing up in fingernails or cheek swabs but that is rare. You are a chimera with 85% of your body being your DNA and 15% of your donor’s DNA in your blood.
However, your hair may grow back a slightly altered color and texture from the chemo. My hair was always stick straight and fine. After months of chemo for AML and then the preconditioning chemo for the transplant, my eyelashes grew back white and the top of my head had wavy, courser hair while the rest was stick straight and fine! After 5 years my hair is pretty much back to normal with a few more greys popping up. My eyelashes are still white!

Interesting reading on why our hair changes color with chemo:
https://www.healthline.com/health/cancer/chemo-curls
It’s pretty normal for us to mourn the things we’ve lost with some of our cancer journeys. But I tend to focus more on what I gained! I have had the pleasure of 5 more years that I wouldn’t have had if not for the bone marrow transplant. And I still have the photo of me with the fresh buzz cut of my long hair being preemptively shaved off the day I received my first round of chemo. My cute young nurses told me I looked like the badass chick from Dead Pool! I went with that… LOL.

Lori I posted so i could hear your wise words. For me, i knew if i posted what i had been thinking i would hear something else to think about. I lost my hair in the last quarter of 2021. That chemo had me lay low. I did not note my hairs growth. I am in do way a badass chick as my head was pitch white. That itself shows how hair does protect us. 60 years in the sun and no freckles or color on my head. For sunburn reasons I must not leave my head uncovered outside. That would feel bad.
So that time it came back the same. Red and curly. I have natural curly hair, so no perms or styling my whole life. Ah ha you have given my hope. My mind is telling me that, a whisper from God. Life Kat, you got the chance for more time. Thank you for the link!!!!
As to eyelashes, they are my color but very short. Eyebrows need to be drawn eye. Mine have always been light. White!!!!! You bring reality to so much webring to the table as worry. I brought my still slightly left breast to the doctor Tuesday and she said that is not unusual as it may stay that way. Overall, for that I have a FU ultrasound in March.