Good News, Overall

The results are in, and overall they're good, but with some weird little twists. You need to read everything before you come to any conclusions about the news, and not focus on the various pieces. (And my conclusion is that it's overall good.)



Good news: I have a low-grade follicular lymphoma. We knew it was follicular, but the confirmation of "low grade" is new. Here's the important thing to focus on: Low grade Non-Hodgkins rarely kills people. That's pretty much a quote from Dr. R. Keep that sentence in mind, especially as you read:



Bad news: The tests show it's at Stage 3, which means it has spread. With NHL, stage 1 means it is localized in one spot, like the nodes near my hip bone. Stage 2 would mean it has spread, but is either on the same side of the body, or has stayed below my diaphragm. Stage 3 means it has spread to the opposite side of the body, and/or has traveled above the diaphragm. For me, it's "and," and not "or." The PET scan picked up some Lymphoma in the nodes on the opposite side of my groin, in nodes near my right lung, possibly near my arm pit, and possibly in my neck. However, we're not panicking at such a list, because Low grade Non-Hodgkins rarely kills people. And besides, there's



Good news about the spreading, namely that it has been contained in the lymphatic system and not traveled to my spleen, liver, lungs, or bone marrow. Any spreading to those places would have made it a stage 4. But there's a paradox with NHL, which some might take as



Bad News, especially if you're looking for all of this to be over with quickly. This is kind of tough to wrap your brain around, but I think I've got it: while low grade Non-Hodgkins rarely kills people, it's also much harder to eradicate than high grade aggressive lymphoma. Radiation is tough, because it's in so many different spots. And chemotherapy could work, but because it's low grade, it might reduce symptoms without getting rid of all of the lymphoma. I understood the concept as he explained it, but I'm having a hard time explaining it myself, unfortunately. So, there's



Good news, and that is, his recommended strategy at this point is to "watch and wait," as medical professionals call it, and which is described at this Lymphoma Information Network web site. Basically, I'm not showing any other symptoms, the lymphoma is really slow-growing, and we need to see if anything else happens. We can afford to wait three months, at which time I'll do another PET scan to check on things. Why? Because it's a non-aggressive, slow growing, low grade lymphoma, and low grade Non-Hodgkins rarely kills people. Of course, the



Bad news is that there's no quick fix. Ideally, I'd have been told it was stage 1 and we'd have started radiation right away. Less ideal, but OK, would have been that it was advanced stage 3 and we would start chemo right away. What we have is something in the middle: stage 3 that doesn't need, and maybe wouldn't respond, to treatment right away. Frustrating, yes, but not as worrisome, because low grade Non-Hodgkins rarely kills people.



I'll let you decide if it's good news or bad news, but it's possible for this to lie dormant for three months, so at my next scan, there's no change. In fact, there could be little to no change for months and possibly years. Good news is that it might not get worse; bad news in that I'm just kind of waiting for something to happen.



So the plan now is this:

1) Get a second opinion from the famous Dr. C at Yale. He's the lymphoma specialist. Dr. R has already consulted with him by phone. I'll see him either next week or the following week, and he'll look at biopsy reports, slides, scans, etc., and decide if on closer inspection the wait and watch approach is the best course. We can afford some time, because low grade Non-Hodgkins rarely kills people.

2) I'll continue to see Dr. R once a month. He'll do a physical exam for any signs of lymph nodes swelling enough to feel, and he'll do some blood work to make sure it isn't spreading to the bone marrow, which would be bad news, but also good news, because then we could decide on a course of treatment and feel like we're doing something. More good news is that my blood work from last week was "perfect," according to Dr. R.

3) In three months, we'll do another CT scan and PET scan to determine if there's any change.



And then we'll continue to do monthly check ups and 3 month scans.



So, overall, it's good news. Frustrating to have to wait and just not know, but better than the alternative. In the meantime, we'll take whatever good we can from it, maybe learning to live with uncertainty and appreciating things short term. I don't know -- I'm not good at being philosophical, and I don't want to sound like the posters that hang on the walls of all 12 doctors' offices I've been to in the last 4 months.



This is going to make for some seriously boring blog entries. Apparently, I've already made my brother bored with one. (And when you make an accountant yawn, you know you have a problem.) I'll provide updates every few days (like with the second opinion discussion), but I'm not sure what else to say.



You can help by donating to my brother's Pan Mass Challenge bike ride this summer; he'll be riding his bike across Massachusetts to raise money for cancer research. You can donate on line by clicking here. Beats waiting around for me to post something.

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I received an anonymous gift in the mail yesterday: this t-shirt from McSweeney's, one of my favorite web sites. Don't know who it came from, but it was someone who knows (1) that I love McSweeney's, and (2) that I almost ran away to join Ringling Brothers Clown College, opting instead for graduate school. So thanks, whoever you are.