I must say that things have greatly improved since my update earlier last week. After ten days of steroids and creams the rash is pretty much gone and I look normal, unless you look too closely. I’ve responded so well that they are already reducing the amount of steroids they are giving me. Praise God for that.
I have been to three different hospitals over four days this week. Two check ups, blood tests and FINALLY, the surgery to remove my chest catheter which was two months overdue coming out. As my wife said, “it’s a fulltime job being sick”. Next week will be slightly better, three hospitals over three days, but no surgery.
I still need to stay out of the sun and be careful in the heat – not an easy task in Norway these days as we face unusually warm weather and dryness this week. But we have a shady deck and a nice living room so I’m getting along well and have a nice excuse not to have to go out and do yard work – I have kids for that.
That’s the update for now. Thanks for sticking with me. Hopefully its smooth sailing for the next few months. I’ll keep you posted.
Good news first- The fungal infection is pretty much cleared up.
The new news is that I officially have Graft Versus Host disease (GVHD). Like everything else with this mess the symptoms vary greatly from person to person – some people get a little rash, some people die. I’m somewhere in the middle. My body has broken out in a rash – everywhere – I’m turning purple with red spots, front and back, top to toe. I feel like Grimace. It started Saturday and spread like wildfire.
In addition, my mouth is full of sores and lesions – especially on my tongue. For four days I’ve been eating smashed bananas (sorry Amie) and soup because they are the only things I can get down. Good diet but a miserable way to live.
I went to the hospital today and was there most of the day getting looked at, tested, measured and biopsied. I left with two new appointments and two new creams to rub on me. If you’ve lost count, that is now five creams and five medicines.
This wasn’t completely unexpected. I’ve kind of been on edge waiting for it for a while. It’s nothing out of the ordinary for someone in my position. It just sucks. But it isn’t without its silver lining. Getting GVHD can act as a vaccine against Leukemia. Along with my skin and tongue the body recognizes the Leukemia cells as an enemy and attacks them – just like we want it to.
While I sat there in the ER for hours on end and watched people come and go, I saw that there were a lot of people who had it worse than me. Crying families, screaming babies, injuries and more filed through. My purple complexion and flaming tongue will pass and I haven’t had to shed a tear yet – but I have noticed that my smile and cheerful disposition are starting to crack. I know that everything is moving in the right direction – I would just like a break from the side effects, infections and secondary sicknesses. I’m getting weary.
Keep me in your prayers. I appreciate it.
