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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jun 18 8:57pm | Replies (402)Comment receiving replies
I figured to add here. It is March 26th and my date to start my conditioning is coming. I am surprised at the flurry to get me in to test and then this week, I message the team and they said they are scheduling the infusions. Are they doing this so routinely that checking in is not deemed necessary? Really? April 2nd, I have labs. docs visit and my pic line put in.
I have told more people and by taking the advice of my supervisor, I walked to our AD building to request a meeting with our HR person. Diversity, Equity and Inclusion. I needed to talk with her about my time off. I spent nearly an hour talking about life. I learned a bunch about her. I told a lot about me, nothing secret but matter of fact about my treatment and my family and genetics. All of this could be found in my medical records.
I work for 3 more days and then I am done till i get home time. Work from home.
For COH as I said above, do they do these infusions so often they do not think checking in is necessary? So right now, I am playing with my hair. The ringlets and all that i have, as I will likely get it all cut off the end of next week. It was just hitting my shoulders; two years it took to grow back from my last rounds of chemo. I told the "Positive image" center at COH to find a wig like my current hair please and when they cut my hair, put it in a bag. It has come back my same color, curl like when I was young and very soft. I am praying to God to let me have my hair back. As it is......
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Good morning @katgob, These last weeks before a stem cell transplant go very quickly. And the transplant process itself starts 7 days ahead of the actual infusion of stem cells.
You had the pre-testing which is routinely done at least a week or so ahead. So you’ve passed all those tests and are now cleared for the process to begin.
I think you’re caught off guard a little by timing if I’m understanding correctly. I know your transplant day is April 9. In transplant-land, that’s considered Day Zero.
But the process will start one week ahead with the installation of your line and the start of the preconditioning chemo; April 2nd for you. Then you count down daily from Day 7. Depending on your schedule, each day may have chemo or another treatment. When you get to Day 1 that is generally a day of rest between chemo and transplant. From my experience I was in the hospital with IV bags of fluid being flushed through to remove toxins that day…no chemo.
After that, on Day Zero, you get the infusion of Stem Cells from your donor. It’s all anti-climactic really, considering the hype involved leading up to it. It’s just like any other infusion dripped in from an IV bag.
I’m so sorry about the loss of your hair…again. I lost mine 2 times ahead of the transplant with all the months of chemo for AML. I had my long hair buzz cut the day before I started my chemo. I took charge and felt pretty empowered. My daughter was there when the woman from the wig shop in the hospital came up to my room to do the deed! It grew back in spurts after each chemo cycle. Then, about 10 days following the preconditioning chemo for the transplant I lost my cute little 3/4 of an inch long sprouts that had popped up. But it all grew back! I actually didn’t mind being bald. It was the easiest hair style I ever had. ☺️. But I also didn’t have to return to work so I can understand wanting to have a wig to feel like your current hair.
I know there’s a ton of details to get squared away before you head to the COH. Are you all set with what to bring along for you lengthy stay? Do you have friends to water house plants and check your house? Will you hold your mail or will someone pick it up for you?