Tuesday, April 28, 2009

Andre's back at the UW Hospital

This is Ed. Andre was on hiatus from blogging because we were enjoying the lull in terms of his myeloma and transplant sequelae. But they reared their ugly heads again late last week.

Andre was told yesterday morning by his oncologist to check himself into the hospital. He's there now and I'm worried sick. I'm heading back down to Seattle tomorrow as soon as my morning meeting is finished.

All these came crashing down quickly. He was fine two weekends ago. He even went to his weekly appointment with his oncologist last Wednesday and was fine. Then suddenly, he woke up on Thursday morning with rashes/hives/bumps all over his body, especially on his fingers. His lips also started cracking and bleeding. It's so bad now that he can barely drink fluids, let alone eat. They put him back on high doses of immunosuppressants last Friday (the doc started tapering these a week-and-a-half ago) but these have not done anything. They suspect it's GVHD based on experience even though his skin biopsy from last Friday doesn't support this.

I just wanted to let you guys know in case you're wondering how he's been. I'll do my best to keep you posted.

Wednesday, April 15, 2009

La mia Divina Commedia

I got bad news from a friend a couple of weeks ago. Yesterday, the news got worse. For allegorical purposes, I'll call him Dante.

Dante has cancer.

His cancer is potentially excisable, meaning that a couple of hours on the table might solve his problem. On the other hand, nobody knows if his cancer has metastasised, so he might need chemo and radiation and all the levels of Hell I've written about over the last 2.75 years.

Naturally, I am Dante's Virgil. I will help guide him through Purgatory and Hell.

The strange thing is the degree to which it bothers me. A friend is going to endure some of the same tortures I've inadequately described. His family will suffer the same difficulties Ed and I are surviving. He will change, his marriage will change, his family dynamic will change. Ed and I will change.

I don't consider any of this a personal burden or a duty. Friends do this kind of thing for friends. It doesn't bother me to be Virgil. It simply bothers me because it seems so unfair. Dante doesn't deserve this. His family doesn't need the life lesson.

It sucks.

The cure.

It wasn't long ago that I talked about 'being cured of the cure' or somesuch wording. Let me tell you that today was a perfect example of the difficulty I'm having with that.

You know I've been anemic. You know I've been tapering my steroids. You know the hurdles.

Well, over the last 3 days, I've stumbled over every hurdle known to man.

Kidney function levels are ~3x what they should be. Red blood cell counts are horrible and I'm scheduled for a transfusion again tomorrow. Many of my meds are being adjusted to protect my kidneys. I'm back on a liter of hydration every day.

.....and my prednisone steroids are going back up to regular dosage levels......

In short, I'm still not making blood, my kidneys are suffering, and I feel like dog doo. Apparently I look good, which means I'll make a lovely corpse.

I should mention that I only weigh 153# with clothes and shoes on. I might set a new personal record.

...but I still don't have cancer, just GVHD. Where can I buy a T-shirt?

Tuesday, April 07, 2009

It's been forever.

It's been a long time since I updated this thing. I could blame it on the fact that life has been moving at a snail's pace here. Nothing drastic has happened. Nothing remarkable, nothing newsworthy.

But the truth is, I've been bored. Spring has taken too long to present itself. My health hasn't changed drastically, and nothing significant has happened.

Of course, this perspective only works if you look at life from one day to the next. The truth is that lots of little things add up to make today far different from last month.

Drugs: I'm no longer taking MMF/myfortec (an antirejection drug). I'm tapering my use of prednisone so I'm enduring a very long steroid taper (crash). I'm back on Mg and K in my hydration because I'm back on foscarnet for CMV.

All the changes and remaining drugs mean I have a rash, a sensitive GI, and relatively low energy, but the last 4 days have been sunny and warm, so I've been doing a few things outside, regardless of the way I feel.

My feeble little brain tells me to ride the motorcycle up to Canada on Thursday. The reasonable adult in me says the weather won't support it. We'll see.

I guess the safest thing to say here is that life is still OK and that we're moving forward. I have nothing negative to write and I have nothing super positive to write. Life moves on.