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

Quite a ride is an understatement. I’m happy to hear David’s great except for the C-diff. That’s a ‘pain in the butt’… Keep up with the vancomycin and add 2 servings of Greek yogurt daily to help restore his gut biome from the C-diff! It’s opportunistic and can hit when the defenses are down. With his numbers dropping, he is getting near rock bottom with his immunity. If he’s on day 8, engraftment can happen as early as 10 days but more often around 14+ days. So hang in there!!

He’s for sure an ideal patient with his upbeat and sunny attitude! It can make a difference for him and everyone around to remain as positive as possible. Some days are more challenging than others. ☺️ He’s in the best possible hands with the team in station 9-4. I can close my eyes and instantly be brought back 5 years ago to the rhythm of underlying calmness on that floor. I never lost a moment of sleep worrying under their care and guidance of my doctor.

Now for you…I’m going to suggest some mindfulness exercises to help with that nagging nighttime anxiety. Nightime is the worst when there is too much quiet. You’re easily distracted during the day. Different ballgame after lights out! Here is a good site with several exercises.
I’m seldom stressed but when I have a bad moment I still use mindfulness exercises to move past the anxiety. https://www.verywellhealth.com/mindfulness-exercises-5204406

Keep me updated! Air hug!

Hi Lori. We are at Day 8.
It’s quite a ride. He had those cyclophosphamide IV treatments Sunday and Monday as an inpatient. He got pretty sick completely lost appetite and then constantly on the toilet. They did a culture and found “c dif.” Started on vancomycin to add to his cocktail of drugs.
Began to feel better Tuesday was eating so discharged on time. Went straight to bed.
Nausea managed well with medication.
Felt good Wednesday and appetite returned. Yesterday bowel issues which continued today. He’s very fatigued and those counts are plummeting (we will go back for a platelet transfusion this afternoon).
We are taking each day/new development as it comes and the Station 94 team is giving him great care, trouble shooting problems and answering questions.
Hoping for engraftment asap.
He’s an ideal patient, grateful and kind and still witty.
I’m doing ok during the days but oh my cresting anxiety at night.

Checking in with all my fellow BMT peeps this morning. How’s David doing? I think he’s at Day +7. The next few days can be a little rough until the new cells engraft and set up housekeeping. He’ll start feeling better when he has some neutrophils on the job again! ☺️
Did he have any issues with his post transplant infusions? Give him an air hug for me!

Good morning, @caregiverx2 I was hoping to see an update from you with your husband’s SCT transplant. My by reckoning I think he’s on maybe Day +7 or 8? He may be entering generally, the roughest week post transplant. How is he doing? The job of caregiver isn’t an easy one so, how are YOU fairing?

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.

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.

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.

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.

Thank you Lori

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?