myelodysplastic syndrome

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I feel like I'm a little in limbo right now. #Transplant

My regular chemo has been stopped in preparation for the stem cell transplant.The hospital admission date is set for December 2nd to begin conditioning. That's what they call the eight days of the chemo that will destroy my own stem cells. Right now it's a waiting game, hoping that nothing will come up to delay the transplant. It seems like these next two weeks will be the longest of my life, but I know when admission day gets here I'll feel like it's flown by.

I spoke to the nurse coordinator today about logistics what will happen when what I should bring etc. She asked me if I felt ready. I had to be honest I told her that I'm as ready as I will get. I know me. If I don't move forward now I will put it off until it's too late. I don't want to wait until I'm too sick to get a transplant. It's now or never for me. #stemcelltransplant #MDS #MyelodysplasticSyndrome


Coping with MDS  #TriggerWarnings   #Death

In December of 2018, I was diagnosed with myelodysplastic syndrome (MDS). MDS is a bone marrow cancer where the body produces abnormal blood cells that don't mature like they should. It can progress to acute myeloid leukemia for some. The only known potential cure is a stem cell/bone marrow transplant. At diagnosis, I was very anemic and my platelet count had gone to as low as 6. Normal is around 120-400. A relatively minor injury could have been a serious issue; a major one would have almost certainly been fatal. There were times that I spent most of my day on the couch to avoid a fall, only getting up to go to the bathroom or to stretch my legs. Sharp objects were used only when absolutely necessary. I was always fatigued, and a simple trip to the bathroom would make my heart pound like I'd just jogged up 10 flights of stairs. I would bruise so easily that I would wake up in the morning to find new "mystery" bruises. My bones hurt. The stress of it aggravated my anxiety and depression. It drained me physically and mentally.

Fortunately, I have responded well to treatment. The symptoms are still there, but they are less intense for now. There are still bad days, but they are fewer. For the past 10 months, I've gotten chemotherapy to slow the progression and my counts have been staying in the near normal range. But it isn't a cure, so the stem cell transplant was planned from the beginning. One of my brothers is a half-match and will be my donor. It means I will be away for Christmas and ring in the New Year in a hospital bed. It's overwhelming, and emotions run high. I do things to keep my mind focused. Things like purging my house of clutter, with a vengeance. In addition to giving me something to do for a distraction, it will serve a dual purpose. A less cluttered house will help with healing when I come home, and it's giving my family less of my belongings to deal with in the event of my death. I go to therapy regularly.

We've been trying to prepare for months, but now it's mere weeks away and I still have so much to do and think about. I don't expect to get every little thing done. That would be unrealistic, and doing what I can manage to get done will make it easier for my family if I don't make it through the transplant. That makes me feel better. I'm optimistic, but I know that there is a significant chance that I will die during or after the transplant. Yes it's helpful to healing to have a generally positive attitude when you're sick. For me though, trying to be positive 100% of the time with no bad thoughts allowed makes it easier to put off things I need to do. Living wills, health care proxies, and DNRs are hard to think about, but that is what I have done. I can't ignore the bad parts; I can't leave my family wondering what my wishes are. So I will be preparing for the worst and sincerely hoping for the best! #MDS #MyelodysplasticSyndrome   #coping  #Death