Back in the swing of things POST BMT

[Guest April Kristie]

Hello all you kind people here on LP! I am back here after nine months Post Bone Marrow Transplant. My last post was in July '16, and was just days away from entering the Moffitt Cancer Center, in Tampa Florida. I was given a 50% chance of coming out the other side well, by the Director Dr. and CEO of the facility, so that was really encouraging. NOT, I felt that it was a glass half full trajectory he had given me. And, he started calling my issue of malformed red blood cell production, a CANCER!!  NO Dr. in the two plus years of dealing with this had ever used that word, and that was a bit disnerving as well. It was just called by its name myleodisplasia, which is an umbrella term for over forty blood ailments. I acquiesced and allowed them to take 19 viles of my blood, and test my genome. They found the culprit a certain gene had 'come alive' and was causing this. As with most of western medicine, they had no clue nor cared how this came about, or what in my life might have triggered the gene, but simply wanted to fix the issue before it might bloom into full Leukemia. I kind of agreed with that assessment. About six weeks after my blood work I got a call from my Dr's mouthpiece the nurse, who would later get the moniker nurse Ratchick, you get that right? She stated that they had found a match for my blood type and If I agreed, to report to the hospital in x days. Everyone in my family was too old for donation, so they, the hospital went through an organization called 'Be The Match', a worldwide organization of DNA samples. Once they find the DNA match, they ask the person whom gave it to donate. Being Germanic, this was easier than say a person of color, my match was a 22yr old German man, whom according to the basic info (you do not get to meet them for ten years), was a large person too. Remember I am 6'8" and 300+ lbs and 63 young!  BTW, in Germany, if you donate your cells you get a tax break, why we don't do that here baffles me. Me and the better half discussed it and after living through many blood transfusions and weird chemicals being infused, we decided that it was high time to try and nip this one, or let me live in my depleted state. I was given a schedule for the entire procedure and to report to the hospital in like three weeks. My mind went into panic mode, some sleepless nights, and ill feelings towards this entire issue. We were given a binder by the hospital, with over a hundred pages of what would happen, what to expect, and outcomes.I refused to read any of it, my spouse was to be my caretaker, she read it! Since she is a Realtor, she can call her own schedule. We went to Tampa, and spent my two last days of freedom at the HardRock Casino and Hotel. Eating everything offered and making a few bux on the floor too. I was admitted after that and was given my own room, with a pull out sofa for the spouse to sleep nearby. Within a day I was getting chemo. I was on one of two entire floors of other folks getting Bone Marrow Transplants for a myriad reasons. This option works for lots of illness'. As my issue was not as involved and some others getting thirty days of chemo before they even show up to 'condition' them, and then into the ward, I only got four days of chemo, trying to kill my immune system, I was getting ready for the German mans cells, being transported via courier to the hospital. Two days after the chemo and its wonderful effects, My cells arrived at around midnight, they checked them in and around 2AM I was being infused with the new cells. There is no pain involved, its like a blood transfusion, and I was had a four line port. As it was late in the night,  I slept through most of it. The nurses were calling it my birthday! Were so happy for me. I felt like poop, no immune system, all my blood numbers were headed to near zeros. It would be two weeks before they started climbing back up. I lost thirty pounds in two weeks. I never once threw up, yea for me, they would not give me any marijuana, as I live in the backward state of Florida. Medical marijuana is finally NOW legal. But, I cannot smoke it, did you know there are fungus' in the weed plant? If I were to do it, It would have to be in a consumable form, like a cookie or brownie, but I digress. I was released after twenty one days in the clink. I was made to live within five minutes drive time of the hospital, in the beginning days, my blood was tested daily. I lived in temporary quarters in Tampa for two months. Then I was able to come home. It has been an uphill struggle getting back to any semblance of normal. Many days simply fly by, I try to get things done in some manner. And, I admit its getting better, my head is clearing out nicely. As for the cancer, I have had two bone marrow biopsies and all evidence of any cancer is gone, gone, gone. I am in the pink, literally. I will say, I live as April, I am legally her. They, at the hospital treated me with respect, acknowledging my female self, I never had a mean person, or did I hear a negative word behind my back, as I was made to walk miles around the ward everyday, to help clear my head. It was a very good experience in that respect. And I commend the amazing nurses at Moffitt Cancer Center, they were aces. Of course you run into those just going through the motions, but on the whole, such caring and giving human beings. I am now living a somewhat normal life, except for going to Tampa every few months for checkups a 200 one way drive, have had to make some concessions in my habits for health reasons, but am doing excellent! thank you very much!

[Rachael]

Glad to hear you are doing better. Cancer is bad stuff. I hope you get better soon. 

[MarcieMarie12]

Glad that you're back!  

Hugs,

Marcie

[Jani]

April I'm glad to hear you are doing well.  Its good to hear from you.

Jani

[tracy_j]

Glad you are well April and back!

Thank you for the update  - good to hear

Tracy