Wednesday, January 30, 2008

No real news today

Today I'm feeling: Pretty good.

Ran 2 miles this morning. Got a late start, so I had to finish early. I got too caught up reading about the Florida primary and the Johann Santana trade (I'm sure that made you very happy, METS2008 -- feel free to share your joy). Ran a shorter distance, but did some wicked hills.

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Still nothing from Dr. C, the specialist. Which is fine -- I'm really not expecting anything. He took a blood test, to see what my antibodies were like (a measure of how well my body can fight infection on its own). I'm guessing they were fine, given that my bone marrow is clean, and my blood work from a week ago was "perfect," according to Dr. R. But it's good to have a baseline. If/when they get low, we can pump them up with medication.

I also don't expect to anything earth-shattering from Dr. C about his presentation of my case to the Oncology Department at the med school. As he has told me Monday, ask 10 oncologists for their take, and you'll get 12 opinions. So my guess is that he's not so much seeking help in determining if the watch and wait is the best approach, but more that he's giving med students a chance to see why the opinion he's already formulated is the best one. I love professors.

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Monday was kind of a rough day. The reality of the situation kind of sank in a little further than it had. I think it came from (1) talking to Dr. C and getting deatils about possible treatments, which we'd only talked about in general terms up until then; (2) being at Yale and seeing patients who were clearly in advanced stages of cancer; and (3) receiving a really negative comment from someone, who let it slip without thinking. Added up, they poked a little hole in my positivity.

Isabel suggested I find a support group, and I'm looking into it. My fear is that the stress of trying to get downtown every Monday night when we have so many other things going on will just not make up for the positive group experience. I want to keep our routine as normal as possible, for as long as we can.

I did, though, find an excellent support group online for NHL patients. I read a bunch of their threads yesterday, and they were very helpful in lots of ways -- helping me understand what to expect, discussing different treatments, just generally encourging one another. There's one thread devoted to everyone telling stories of how they found out about their diagnosis. Some very funny, some infuriating. My own experience wasn't great (particularly since I wrote a 350 page dissertation on giving bad news). So maybe I'll add to that discussion. I learned some things that are worth discussing with the docs.

One kind of cool thing about the members of the group is that each one's signature includes significant dates: when they were diagnosed, when they began and ended certain treatments, how long they've been "dancing with Ned" (NED means they got a test result that said No Evidence of Disease). So all of that is kind of inspiring, and certainly educational.

So that's all for now. I'll post again when I have news, though I still have a couple of topics to get out there to help fill the time. In closing, I'll share a "joke of the day" from one member of the online support group:

What do you call a very short fortune teller who is running away from the police?
A small medium at large.

2 comments:

christine said...

Hey Bob~
Just wanted to say "hi", im glad you found a support group online, i think it's important, im sure it will help you and probally help answer a lot of questions you have, cute joke by the way, keeping you in my prayers always, and give my love to the fam.xxoo
Christine

Will Hochman said...

What do you call a chair with amazingly strong legs and heart?

Bobster, I hope you will not only dance with NED but teach him to run with you as well, Will