Wednesday, June 3, 2009

Me

... and everything has been getting harder.

I spent most of Memorial Day Weekend in bed, save for a very diverting visit from some friends and their Bernese mountain dog. Another friend came to visit, and I just couldn't drag myself out of bed to see her, redoubling how crappy I felt.

So what's wrong? My agonizing back pain has faded to the background. But my shortness of breath hit a tipping point sometime in mid-May; it's gotten to the point where I can get breathless walking from one room to another. I feel like the fatigue has lessened slightly, though I don't know if my wife would agree with me. I'm still falling asleep at the wrong time and waking up the wrong time -- I'm keeping the hours of a club kid, and yet I rarely stray far from the couch. For a while I had no energy for the computer, no blogging, no e-mail, no Twitter, nothing; so maybe this is a small, good sign.

In terms of substance, we're heading to New York tomorrow but I don't expect to find out much. It's a brivanib nursing visit, but I think we will see the doctor and get his thoughts on the breathing problem (I'm hoping it's at least partially a side effect) and all the other issues. In terms of goofiness, I've gotten a little ritualistic about my pills again. Back in the chemo-by-vein days, I'd recite a little mantra to myself as the medicine began to flow; when I began oral chemo, I tried to imagine little armies forming to just, I don't know, pop the malignant cells. But anything can become routine, and for a long time, I just swallowed. Lately, though, I've been trying to imagine opening that dull, white brivanib bottle as uncorking that proverbial can of whupass. It's nice to think so, anyway.

8 comments:

Anonymous said...

give um hell and give my regards to Broadway. Don't forget the doughnuts.

Anonymous said...

hang in there. one day josh is out for the count the next day he has a knock out...you are all incredibly strong and my prayers are with you and L...and the kids.
kim

Elizabeth said...

I just recently started following your blog. You write beautifully! Just sucks you got dealt this subject...

Take care and good luck in NY...

Anonymous said...

Kim's right. A month ago I could barely get out of bed. I spent hours in there, got up for breakfast then went straight back to bed. I cried a lot cause it was so frustrating. I wanted to do more but couldn't.

Well today I went to work. Maybe there's an explanation like pnuemonia and you'll get stronger and back to being you again.

Josh

Kathy said...

Dear Sarcoma friend (SF) I'm sending healing thoughts your way. Sarcoma sucks and I am hoping that your next scan shows shrinkage and that this shortness of breath (SOB!!) is caused by something your Dr.'s can do something about.
Hang in there.

Elsa D. said...

Good Luck. I hope Brivanib continues to work.

SG said...

Thanks so much for the kind (and flattering!) comments, everybody. They mean a lot to me.

Anonymous said...

I'm sorry you have been struggling with so much pain and "SOB". So glad some of the pain is easing up. Hope your doctors can find a not-so-painful way to improve your breathing. Don't worry about the days you can't make it to the blog. You are in our thoughts every day.