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 5 7:39am

Lori,

I hope all goes well. Those are a lot of appointments. I expect for you it is a test at a time.
I got my infusion at 6:30pm. I sent 2 messages to my dr in the portal. The head nurse did not know exactly, An approval or some other reason. She gave me a $25.00 gas card to say sorry.
My nurse said to get a twin memory foam to make my bed comfy. Cassy from the wig office said bring your own shampoo and conditioner s i will only get baby shampoo. Makeup? Buy a new pencil and shadow. As for my work, I work in an office at a college. I worked from my computer and phone during covid and during cancer treatment.
I hope all of us have a good day. Acceptance.

wendy517 | @wendy517 | Apr 5 8:40am

In reply to @loribmt "Good morning! Two down and three to go, huh? I was going to suggest Zofran or..." + (show)

Praying and sending light for all clean 🙏 ✨️ ❤️

You're the best Lori! We're all behind you and are grateful to have you as a volunteer here 🫂 🤗 😘

katgob | @katgob | Apr 5 9:12pm

Hi all, 4th infusion. Zofran byvthem and 2 senna laxatives for me!!!
My nurse called early, so I got in and done on time. She was training a new nurse. Very new and nervous. It did take away from me the patient, but training needs to happen.
I did stop at the help area in the hospital. Asked her if I leave my stuff down with her. I also asked if people bring a lot. She said they do!!! Some bring one small, others bring 2 or 3. Crazy.
I am packing tonight.

Lori, Volunteer Mentor | @loribmt | Apr 7 6:45am

In reply to @wendy517 "Praying and sending light for all clean 🙏 ✨️ ❤️ You're the best Lori! We're all..." + (show)

Thanks Wendy! I was feelin’ the love. It worked; All the labs and test results had us happy dancing!! 💃 Just waiting for one more set of results but my doctor isn’t anticipating anything unexpected. As a sign for how well things are going, I don’t even need blood work for 6 months! That’s huge! 🥰 That’s my longest leash yet!
Thank you again for your sweet well wishes. I hope and pray that you’ll find some answers soon so you start feeling better. Hugs!

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!

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.

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.

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 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 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! 🧬

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