I can’t believe it has already been 138 days since my transplant.  I am blessed to be here today.  I sometimes forget how grateful I should be, but I always manage to stop and remind myself not to take anything for granted.  I know things could change in a split second.

Medically speaking, I achieved a victory this week.  All of my “transplant” medications have been discontinued.  All of a sudden, I feel like less of a cancer/transplant patient, except when I look in the mirror and see that I still don’t have much hair and I look pale all the time from not having enough blood.

My main struggle lately has been extremely low blood counts (i.e., red blood cells, white blood cells, neutrophils, platelets).  This was probably because I was taking valgancyclovir for my CMV.  Since I’ve stopped all medications this week, it is expected that my blood counts should slowly recover.  My fingers are crossed.  I am currently requiring 2 bags of red blood cells weekly, and it is expected that this will continue for several more months at least.

My GVHD of the skin flares up once in a while, with itchy, dry, rashy and scaly spells.  These are not bad enough thus far to be treated with steroids.  My GVHD of the mouth also flares up once in a while.  So one week, I may be enjoying my food a bit more and gaining a bit of weight, but the next week, I’ll be tasting nothing, hating my food and losing weight.  It’s up and down.  This is also not bad enough to be treated with steroids.  My GVHD of the gut is what is worring me.  So far, it has teased me on more than one occassion, but then it calmed down.  So again, so far no medication required in this respect.  I am definitely counting my blessings as I know these can all be quite bad.

I’d also like to report that my hair is finally growing back.  It’s fuzzy now, and you can still see skin/scalp so I still need to wear a hat, but there’s definitely hair there.  And my facial hair…well, it’s starting to fall off slowly now so I look less like a monkey and more like a woman.  LOL.  Maybe soon, I’ll even get up enough courage to post a recent photo of myself!  But only maybe…LOL. 

I’m expecting the results of my most recent PCR and chimerism tests soon.  The PCR test tells me if there are any CML cells detectable in my blood and the chimerism test tells me how much of my blood is my donor’s.  We want my donor’s blood to be 100%.   I will post the results as soon as I find out.  We will be running these tests every 2-3 months for the next little while to make sure the leukemia has not come back.

In the meantime, I’m trying to figure out whether or not it’s time to “get on with my life”.  Everything came to a standstill when I had my transplant.  Now, I’m trying to decide what I can do and what I still can’t do or shouldn’t do yet.  I always think that if I revert back to my old self, and do things like my old self, that I might somehow jinx myself and that my leukemia would come back.  That’s why I’ve been rather hesitant with getting on with my life.  For example, I’m STILL wearing my comfy hospital clothes practically 24/7.  I refuse to get out of those clothes except for when they are being washed.  I think I’ll need a bit of time to get over this.

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One Response to Day+138

  1. Cheryl Thornton says:

    Winnie – so glad to see you posting…I found that life didn’t seem as important as keeping myself safe (ie/germs) and so I stayed in transplant patient mode a long time,…probably 9 months or so – having your meds stopped is a big step and one that should be celebrated, but also one that seems weird because it seems like you were on them FOREVER – lol – I think you have to do whatever feels comfortable for you – I am hosting in the chat site tonight should you feel up to joining in.

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