Happy: A Quest for Life After Death

Monday, July 21, 2008

All that and a bag of ... shingles?

So it's been a rough week. The truckload of side effects from the first infusion of Torisel really hit on Wednesday, when Mat didn't get out of bed until 5 in the afternoon. Things gradually improved over the rest of the week with the chemotherapy side effects -- Mat's getting more adept at managing the nausea and fatigue -- but a small rash on his leg got much worse.

Mat went in for his second infusion of Torisel today, which seemed to go well. The weird part of the day was the rash, which now covers most of his upper right leg. Dr. Ryan came up with some interesting possibilities (the "incredibly rare" necrolytic migratory erythema, which can be associated with neuroendocrine tumors, seemed to be the most exciting). Dr. Dave sent him to a dermatologist immediately after the infusion, who seems to have settled on a diagnosis of ... shingles.

A firm diagnosis is pending, until lab analysis of some tissue. Mat has pretty strong feelings about the collection of the specimens. Mat says:

The highlight of my day was definitely the x-acto knife. After savaging what he felt were the juiciest bits of my gammy leg with a series of alchohol swabs, our good doctor reached pleasantly into a drawer, retrieved a disposable x-acto knife and a small glass specimin slide (think middle-school microscope lab) and mentioned that the next step was going to hurt a bit. Things turned a bit surreal for me at that precise moment, my life warping suddenly into something Dali would have painted when feeling particularly imaginative. This was helpful I suppose, in that reality was not (and is not) particularly useful on a day like today. I'll write this one off and hope for a Pissarro tomorrow.

Then at home Mat somehow got a sharp particle stuck in his eye, where it remains despite repeated efforts to remove it. He's hoping the pus now oozing out of his eye (sorry to be gross) will help clear out the particle. He's now rocking back and forth in a corner listening to "Rocket Man" over and over (on his kick@$$ Bose headphones, a much-appreciated gift from co-workers that may have saved his sanity over the last year). "Rocket Man" seems to be helping him out of the dark place.

Should I tempt fate by asking the question? Oh the heck with it.

Could it get any worse?

Don't answer that.


dm said...

Oh, Kimberly... a worse thing could not have happened to a better family... @#$%!


Janae said...

Wow. I seriously can't fathom how you both deal with everything. You are both AMAZING.

ellen said...

I'll be over soon with another treat. :)

lambie-pie said...

Oh my goodness, poor Mat. He is such a good sport through all this.

mooremd said...

He may have shingles and something stuck in his eye, but the man has a great sense of humor and is an excellent writer. Hang in there and let us know how we can help, we're just a few blocks away.

EmilyCC said...

Talk about a horrible, terrible, no good, very bad bad week! (Um, and has the dermatologist not heard of using numbing products before slicing off tissue?)

Sigh, sending extra prayers your way, my dear.

Pippy said...

Kimberly - where did he have his eye looked at? I work in an opthalmology practice near MGH, let me know what was said and I'll talk to one of the cornea MD's and can get him seen asap, we have some of the very best. I'll email you my email address... leah cox

contigo said...

Wow, that sounds absolutely terrible. I suppose the best news is that you still are ahead of Job because you have so many friends that love you!

You are always in our thoughts and prayers.

SLP said...

Oh K, I nearly died when I read this post. I then thought: 'well, at least her children are sleeping through the night'...
Sending you lots of hugs and love,

Dave Robbins said...

Hang in there you guys. Many prayers are with you.