Saturday, July 20, 2013

My Dance Card

Friend Ark commented on "Reader Discretion is Advised" and asked questions. His first set of questions were:

What are you doing with your time apart from all the suffering. Are you able to watch Le Tour? are you too exhausted to go walk outside?

At the beginning of treatment I though I might actually be going in to the office during the second week and maybe a little the third. I think I actually went in on Monday in Week 2. The rest of the time I haven't felt well enough. I've tried to keep up on my work email (just getting rid of junk and monitoring my former projects - I haven't contributed anything in a while).

So I've been pretty much a hermit through it all, surrounded by my lovely family.

I get out every weekday to go to radiation treatment. That involves a drive into the Dana Farber Cancer Institute in Boston (the "Fah buh"). With no traffic it's a 20 minute drive each way. With traffic it is an hour or more. The first two weeks we had afternoon times so always had traffic at least one direction. Then we switched to a fixed 11:00 AM appointment every day. Most of the time we have pretty easy traffic now but we are sometimes surprised.

On Tuesdays I meet with Doctor Chemo before radiation for a weekly checkin. On Thursdays we meet with Doctor Rad to discuss the progress of radiation therapy.

Speaking of which, last week Lumpy the Lymph Node shrunk almost completely. I can still feel him, but he is now the size of a pea. At his largest he was the size (and firmness) of a ping pong ball. I think I mentioned before that Lumpy wasn't actually cancerous - he was just responding to the nearby cancer. He is now returning to life as a normal lymph node.

I haven't been out of the house to do anything else in a couple of weeks. It's hard to imagine going out in public because I need to carry a bottle of mouth rinse (water with a little salt and baking soda) and a container to spit into. And sometimes I have to work to get the mucous out and most people would find that sound pretty offensive.

It doesn't sound very fun to go out to eat with the family. Food still looks and smells great, but in my mouth it is abhorrent. I sit with them at the dinner table to be social but it reminds me that I'm not going to taste food anywhere close to normal for probably at least two months from now.

As for walking outside, I'd love to! But we've had two different heat waves during my treatment. For the past seven days temps have been in the mid to high 90s with high humidity. No one wants to go outside. I stay in the air-conditioned house. Our lovely neighbors Glenda and Victor loaned us a high-capacity window air conditioner that nicely cools our entire ground floor. I would be even more miserable without that.

The heat wave is supposed to break tonight with temps for the next week in the 70s and 80s. I hope to get out for some walks in that more pleasant weather.

Supposedly I will eventually become fatigued enough that I will spend all my time on the sofa (or the recliner we've rented). So far I don't feel much physical fatigue, my fatigue is mental.

I also spend a fair bit of my time feeding and hydrating now. It takes an hour or more to get in a two-can "meal" plus some water. Then at other times I work on getting in Gatorade or Pedialyte or more water. So that all adds up to 4-5 hours per day.

Finally, I spend a fair bit of time just feeling bad. It's unpredictable, but I'll suddenly have a bad headache or a really sour stomach or some other discomfort that makes me just want to lie still for an hour or so, often without stimulation of any kind including TV.

Big Sister was here for a week and half and left Wednesday. Little Sister arrived Wednesday and is staying for more than two weeks. She'll be relieved by Los Parentes who will be here when treatment ends and then finally Wonderful Wife's parents, who I'll dub Los Generositos, will arrive and support us for perhaps a couple of weeks. It has been wonderful having family here. The biggest benefit is that The Progeny get to have a somewhat normal summer with their aunts taking them on outings and swimming and otherwise entertaining them. And during those times I've felt especially crappy my sisters have spent many hours rubbing my feet or head - it has been most comforting. Sibling love manifested. It's wonderful and I am so grateful.

As for Le Tour? I've watched every minute of it. I Tivo the 4-5 hour live program in the morning and watch it during the day. It's a really nice distraction. On those long flat stages I can doze through it and still keep track of what's happening and see the finish. It's the highlight of my day.

I always have withdrawal after the Tour ends. This year that withdrawal is going to be even worse. I'm really going to miss it on Monday. I think they should start over and do it again!

I think it's been an especially exciting tour this year. It seems like it must be mostly clean as everyone has shown signs of weakness at one point or another. I'm excited about the nighttime finish in Paris tomorrow.

No comments:

Post a Comment