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

Posted by Lori, Volunteer Mentor @loribmt, Feb 14, 2021

The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori

What diagnosis brought you to a BMT?

How has it impacted your life and that of your caregiver?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

katgob | @katgob | Apr 17 10:50am

I will update later. My whole post vanished as a Mayo Clinic survey popped! Guess Day 8 and my others days will come later.
As I knew by your timeline on your transplant, I am on target. Where I am supposed to be.
For sure my "not in oz" was day 3 realizing I had 2 chemos for the rejection coming.

Lori, Volunteer Mentor | @loribmt | Apr 17 8:58am

In reply to @katgob "Lori, My update. So far keeping nausea away. Today and tomorrow I have the 2 chemos..." + (show)

Hi Kat…didn’t want to let another day go by without checking in! Day 8? That’s about the time things started to get a little dicey for me. How are you feeling?

katgob | @katgob | Apr 12 9:11am

Lori,
My update. So far keeping nausea away. Today and tomorrow I have the 2 chemos for the research study. I must say I did not ask what the medicine was. Plus, due to the numbers of my 24 hr urine test weeks ago, I must have a catheter for hydration for two days.
As I have been doing, I am listening to my nurses and the doctor team that come by daily.
I will ask for compazine if the nausea increases. That will help me sleep as my urine is processed for me.
By the 14th my anti rejection meds start.
Thank you Lori. I am remaining positive and hearing the doctors say I am doing well.

Lori, Volunteer Mentor | @loribmt | Apr 12 8:28am

In reply to @katgob "Yes, so far, so good. Simple dinner and looking for how I feel. I have napped..." + (show)

Hi @katgob…sending a hug. Day 3 for you! The next two weeks can be pretty challenging as your body starts feeling the after-effects of the preconditioning chemo and the transplant itself. As soon as those new cells engraft in your marrow, usually 14 to 20 days after infusion, you’ll start to feel much better again as the bone marrow starts producing new blood cells!

Just so you’re aware, fatigue will be your constant companion for a while. Don’t try to push yourself because it can’t be done. Just listen to your body when it tells you to rest. It’s not a failure on your part! So do your best to keep your spirits up during this period. It passes! Sending positive vibes for strength and courage. 💕

Lori, Volunteer Mentor | @loribmt | Apr 9 7:10am

In reply to @katgob "Yes, so far, so good. Simple dinner and looking for how I feel. I have napped..." + (show)

Good morning @katgob! Happy Rebirth Day! Wishing you a smooth transition into your 2nd life as you get the infusion of stem cells. Pretty anticlimactic after all the buildup because it only takes about 20 minutes, but gives you a new lifetime. 💚💙
Over the next couple of weeks you’ll most likely feel very tired and possibly nauseated. This will pass so keep up your good spirits. Sending an air hug! 🧬

katgob | @katgob | Apr 7 9:14pm

Yes, so far, so good. Simple dinner and looking for how I feel. I have napped acouple 30 minute bits.
I love the support. I will cover the nurses and staff who help me on the way. Walking is something promoted and the route around floor six is marked by feet on the baseboards.
I watched the minion shows for 1 hour. It made it easy to focus. Fun.

Lori, Volunteer Mentor | @loribmt | Apr 7 1:50pm

In reply to @katgob "Funny, scrolling for what to watch before my chemo at noon, having my 2nd clotromazole pill,..." + (show)

Minions!! Well, if that isn’t a sign!!! 🥰 There’s no emoji for a Minion or I would have put that in here. ☺️

You’ll be a rock star patient with your positive and easy attitude.

katgob | @katgob | Apr 7 1:44pm

Funny, scrolling for what to watch before my chemo at noon, having my 2nd clotromazole pill, one yesterday. Waiting for the hour of ice chips I will keep my mouth frozen with, so the melphalan will STAY OUT. What does my channel flipper land on but minions.
GOD IS IN MY ROOM.
My PCA this shift says I am the easiest patient. Do not ask for more than I need.

katgob | @katgob | Apr 7 9:23am

Lori,
I love this post.
I arrived in the hospital to meet the night crew, get my room and all the check in work being done. Hospital admissions was not open, so I got to watch safety videos, wash my body and hands and a long ago video from Sloan Kettering on chemotherapy. They asked me the questions from my bed.
Today is my Melphalan. Some time today, earlier. Not sure. Shift changeover now.
I have a picture from my room. Sunny Sunday, this was Saturday night. DUARTE California.

Lori, Volunteer Mentor | @loribmt | Apr 7 7:00am

In reply to @katgob "Hi all, 4th infusion. Zofran byvthem and 2 senna laxatives for me!!! My nurse called early,..." + (show)

Your transplant clock is ticking down! One more day of chemo, a day of rest and then…drum roll! All of this excitement leading up to the infusion of stem cells which is hugely anticlimactic. Takes about 20 minutes. ☺️

Being a ‘science geek’ I tended to think of those cells pouring into me like a unit of Imperial Storm troopers from StarWars…the Darth Vader music in the background. LOL. Another friend, whom I met while recovering from transplant, thought they were her Minions. Whatever you name your new Stem Cells or your new immune system, they’re there to attack and defend you against the cancer that was in your body. With this last round of chemo, your bone marrow will have been ‘scrubbed squeaky clean’ making a new, pristine home for those cells.
Miraculously they find their way to the inside of your bones and set up housekeeping in a couple weeks as they start regenerating the marrow and pouring out new blood products.
Wishing you great success on this mission!! I’m thinking of you every day and sending vibes of strength and endurance. Hugs!

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