Tuesday, July 31, 2012

The Beginning of a Plan

This blog has been more of a spot for thinking than updating. But having spent yesterday at Dana-Farber for my six-month scan and bloodwork, an update seems in order. 

Six months ago, Dr. LaCasce had suggested that we look at a CT scan around this time to see how the lymph nodes were growing and probably talk about a treatment plan. And that's exactly what we did.

The scans showed some gradual growth in the size of the affected lymph nodes. They're not huge (huge would be 10 cm and these are still under 3 cm), but they are showing growth. My bloodwork looks  perfectly normal, though, with no evidence there of any lymphoma. But the gradual growth of the affected nodes is driving the decision to start treatment.  

Deep breath. 

What does that mean? 
For starters, it means a few more tests to definitively characterize the disease - including a needle biopsy of a lymph node in the abdomen, and a test of the bone marrow. And that determines how we treat;  both options involve rituxan, but the chemotherapy drug that accompanies the rituxan is different in the two different scenarios, and the timing of delivery differs slightly. Both plans call for infusion two days in a row, either every 21 days for R-CHOP or every 28 days for BR, for 4-6 treatment cycles. The goal with either one would be that I remain working, active -- no restrictions on anything I eat or do, although the R-CHOP tends to have more side effects. If you're interested, a recent article on the two is here:

Then what? 
Then, after we've beaten back those nasty lymph nodes, we wait. For a long time. We hope a really long time. And when it comes back -- and that's the deal with follicular lymphoma, it does come back -- we beat it back again. 

So what does this mean? 
I have mixed feelings about this. As I've said before, it's tough to be sitting around just waiting for the cancer to progress. The natural reaction is: Attack! But now that we're starting to put an attack plan in place, well, it's kind of like getting diagnosed all over again.  New routines. New procedures. New unknowns. And unknown is code for no control, a thread that runs through a cancer diagnosis, or any chronic illness, as a wise person said to me recently. 

Lack of control isn't something with which I deal too well. Remember, this is someone who plotted out what his busy day looked like when he was 7 or 8 years old. Planning is as natural for me as breathing. So take away my ability to plan and it's a little hard to breath at first. I had mapped out in my mind that I'd be watching and waiting for several years; then we'd treat and be in remission for a few years and then we'd do that again. But there's a little roadblock on that map so we'll have to detour around it. Once I figure out the path of that detour, I'm sure I'll map that out, as well.