The Waiting is Over

Well, it looks like my Watching and Waiting is over.

I saw Dr. R today, and we agreed it's time to begin treatment. I start Rituxin on Friday, January 15 -- the second anniversary of my diagnosis.

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Last Wednesday, I noticed some swelling at the top of my left thigh, just below where the cluster of troublesome nodes is located. Seemed like a bit of a coincidence, so I assumed it was probably related to the NHL. I called Dr. R -- he was in a different office that day, so I spoke to a nurse, who called the doctor. She called back with his report: he "wasn't overly concerned," but thought I should do a CAT scan and see him soon after to discuss the results. No problem with either of those things for me: I was scheduled for a 3 month visit on the 19th, and about a month shy of an annual CAT scan. We scheduled the scan for Monday (yesterday) and the appointment for today.

I really had no idea what the swelling was all about. There are nodes in that area, so maybe it was just more of the same? Maybe some lymphedema -- swelling caused by lymphatic fluid that can't drain the way it's supposed to? Maybe something unrelated to the NHL?

The scan yesterday was pretty uneventful (just the usual stomach discomfort from my barium milkshake).

The appointment on Tuesday started with bloodwork, as always. When I saw Dr. R, he said the CT scan results hadn't come in last time he checked, but that he'd check again. He said the bloodwork was "rock solid," with no anemia (a signal that the lymphoma has spread to the bone marrow), and everything else was also in normal range. He did a physical exam, and there was no indication that any other nodes had popped up in other areas, or that any organs were swollen. He said the thigh was definitely swollen, but he wasn't sure what the cause was exactly.

He then got a phone call from the hospital that he had to take, so he left to go to his office, saying he'd check one more time for the scan results.

When he came back a few minutes later, he said, "Well, I think we have an answer." He'd seen the scan results. The nodes on the left side had grown some; two of them had almost doubled in size, to nearly 6 centimeters. There was also some growth on the right side, and in the middle of the abdomen, in nodes that were too deep to be felt by hand.

The scan didn't go down far enough to see what was going on in my thigh, but Dr. R guesses the swollen nodes are keeping things from draining, and that's what's causing the swelling. He said the two large nodes are getting close to some blood vessels.

He said we could probably wait for another couple of months and see what happens, but his recommendation was to start treatment soon. From what we can tell, there's no transformation to something more aggressive, and there's no spread to any other areas (though some additional bloodwork results in the the next day or two will confirm that). So that's all good news. It's more about the area they're in, and potential problems that could come if things got bigger or more widespread.

Then we talked about treatment options. We'd always kept Rituxin as the first option, with stronger treatments to come after that. So he started the conversation with, "Well, there's a treatment called Rituxin--"

I kind of cut him off. "I know about Rituxin. I'm a professor, remember?"

He laughed. He skipped the background information, and said we'd try Rituxin for four weekly infusions.

"And if that doesn't work?" I asked.

"Well, there's kind of an alphabet soup of treatments--"

I cut him off again. "I know -- FNR, CVP, R-CHOP...."

He laughed again. A little obnoxious, I know, but I've been elbow deep in this for two years. I don't need the kindergarten-level lectures. (I'm aware that comment was obnoxious, too.)

He said he would consider Fludarabine, but he thinks I'm too young for that. I know it kicks the heck out of the immune system, and has some long-term side effects that might not be an issue for someone who's 65 years old. (I just wrote about all of this a couple of weeks ago.) I wasn't crazy about the Fludarabine option anyway, so I'm glad I didn't have to fight him on it. He thinks R-CHOP is too aggressive at this point -- also something I agree with.

That leaves R-CVP, a less aggressive version of CHOP. If and when the Rituxin stops working, we'll try CVP. That's just what I wanted to hear.

So that's where we are. I start Rituxin on the 15th, and I'll go for four weeks. We'll deal with all of that for now, and worry about the next step when we have to.

In the meantime, I still feel good, and look damn good. I ran 3 miles this morning. I don't plan on my 3-times-a-week runs changing anytime soon.

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It's funny -- I've been stepping up the posts in the last couple of weeks because I wanted the January 15th post to be a reflection on my two years of watching and waiting, but also wanted that post to be my 300th Lympho Bob blog entry. I'm very close to that number -- about 6 away, I think. I've been planning out the blog entries for the next couple of weeks. I'm probably going to scrap those plans.

In the next day or two, I'll get more into what i know about Rituxin. I've written about it a bunch of times already, but now is a good time for a refresher. Dr. R and I talked about what to expect from the treatment sessions; I'll get into that a little bit, too.

I'll probably do this again on the 15th, but I want to thank you all again for your support. The blog has been a wonderful thing for me. Writing gives me an incentive to keep reading and learning, and the comments I get from people have been very inspiring. It's great to know that family and friends are reading, and great in a different way to know that complete strangers are getting something out of it, too. I hope reading about these next steps in my journey keep helping you all out.

Tune in again soon......