Wednesday, October 20, 2010

Dr. R Visit

I had an unexpected visit with Dr. R today. I'll tell you the ending to the story right at the beginning: Everything's OK. But you can keep reading anyway.


Monday morning, I noticed some swelling in my thigh. It was the same kind of swelling, in the same area, that I noticed last winter, and that prompted the need for treatment. Not nearly as severe as last winter, but the same kind of swelling. So I'm thinking maybe this is the beginning of the same thing -- internal nodes that are growing enough to block a lymph duct and cause a backup of lymphatic fluid, and that fluid backup leads to swelling in my thigh.

So I called Dr. R's office Monday morning to make an appointment. His secretary answered, recognized my name, and got to work finding me a time to come in. Nothing available Monday. Maybe something on Tuesday? 10:00? No, I have a meeting at 10:00. Already canceled three times. If I cancel again, my colleagues will kill me. Thursday at 1:30? Or maybe later? No, same problem. No meeting for me, but all Peter and Catherine have orthodontist appointments at 2:00, and all three kids have something going on later on Thursday -- basketball, dance, soccer.

The secretary was wonderful about trying to get me in as soon as possible. But I tried to explain that at this point, the swollen thigh, and making an appointment, was more of an inconvenience than a worry. I wasn't feeling so desperate that I needed to see the doctor RIGHT NOW; I just wanted to get in to see him at a time that it wasn't going to mess up too much of my very busy schedule. She laughed. And we decided that it's probably a better attitude, feeling inconvenienced, than feeling like I need to see the doctor immediately.

We settled on Wednesday at 11:15, which meant I had to cancel my 11:00 class.

Very inconvenient.


Naturally, in the 48 hours until the appointment, I started looking at the next step. Will we just go for Rituxan again? The last time I saw Dr. R, he said he wouldn't rule out Rituxan completely. That would be nice, in some ways -- I know how tolerable this treatment is. But inconvenient: it would mean canceling my Friday class for four weeks. Maybe six or eight.

Maybe Dr. R will go for Treanda? This is actual chemo, but with a much better toxicity profile than, say, CVP or CHOP: rarely is there any hair loss, and while there's typically some nausea, my support group friends say it usually lasts for only a few days. But Treanda is given on a 21 day cycle, with infusions on day 1 and 2, then nothing again until the second round, day 22 and 23. This can go on for up to 8 rounds. That's 24 weeks -- six months. That makes it slightly less inconvenient than Rituxan: I'd only have to cancel two or three classes for the rest of the semester, and maybe some at the beginning of next semester. But that doesn't account for the potential nausea or other side effects, which could make things unpleasant for a few more days each cycle....

Inconvenient, inconvenient.


The visit is kind of anti-climactic: When I got to Dr. R's office, it turned out he didn't even ask for blood tests. When I made the appointment, I told the secretary that I wasn't in any pain, and the swelling wasn't interfering with anything (and really isn't all that noticeable if you aren't looking for it). So after his physical examination, Dr. R said, "I'm really not that impressed," which is a funny expression he uses a lot. He means it in the literal sense of "This isn't leaving an impression on me," not the more typical meaning of something like, "Swelling? You call that swelling? Come back when you have some real swelling."

But, actually, that's pretty much what he said. Compared to the swelling I had in the winter, this is nothing. My thinking was, it's not exactly nothing, it's the start of something, so let's get to it before it becomes something else.

But he wasn't convinced that it really is something. Or that, if it is something, it isn't something we need to worry about just yet. I changed my workout routine recently -- maybe that's it, some swelling from a muscle pull. Or maybe it is related to the lymphoma, but the level of swelling I have right now is actually about where it was when I finished my Rituxan last winter, so it's where we would hope to be at the end of treatment, not the beginning, so why start treatment?

I understand his thinking. He's always had the philosophy that with an indolent lymphoma, we don't treat until we absolutely need to. And right now, we just don't need to. Maybe this is nothing. Or maybe it's the start of something. But it definitely isn't at the point where it needs to be treated. In fact, I have an appointment that was already scheduled for December. He said if I wanted to, I could even move that back a while, since I've seen him now, and won't need to for another three months. Which is good, when you think about it. He's not worried. But I'm keeping the appointment anyway.

I get his thinking, and, I guess, I agree. But now it's just more watching and waiting, and that sucks.


Dr. R said he was sorry he couldn't give me anything more definite. I told him it's been almost three years of the same, and I'm kind of used to it.

On the way home, Isabel told me she's more worried about how I'm doing mentally than physically. My blood pressure was up today. I was feeling a a little of that stress dizziness this morning. But I think I'm OK. It helps to know the doctor is not too worried.

I asked Isabel how she was doing with all of this. She told me (English teacher that she is) that she wishes we could just settle on a story:

When we first got the diagnosis, she said, the story was about Fighting This Thing and Beating It. That's a pretty common story for a cancer patient.

And then, that wasn't the story anymore. Within a few days, we decided on watching and waiting. So the story became Living Our Lives as Normally as We Could And Trying Not to Worry.

Then that changed last winter. The story became Let's Push This Thing Back, which is different from Let's Beat This Thing, because we know it's not going to be beaten, not with Rituxan.

And now the story is changing again. It's back to Let's Keep an Eye on This Thing.

People who read books, said Isabel, get used to the comfort that a good final chapter brings. The characters and the plot and the conflict that were introduced in chapter 1 get all wrapped up in the final chapter.

But this book doesn't have an ending. Worse than that, the story keeps getting changed in the middle of the book. It's not a sad story, and that's good. But none of the stories seem to have an ending. That's not as good.


And so we go back to the book, and figure out which story we're going to tell ourselves this time.

We'll deal. We always do.

(And I'm feeling fine.)


Anonymous said...

It so sucks not knowing where to put your energies. I think of you often and hope you and Isy are able to take the time from your busy lives to take care of your emotional needs. Worry has a way of sneaking up on you when you least expect it to make you feel physically ill hence ruining an otherwise good day. Sort of like the Inquisition.

Love to you both, Mary S-B

Anonymous said...

It's hard to know what to write, Bob, other than we are sending the five of you huge hugs, telepathically, and willing your nodes of gold to behave themselves.


Lymphomaniac said...

Tom and Mary,
Thanks for the encouraging words. For being so nice and confessing that way, you won't get...The Comfy Chair!

Anonymous said...

I like things with a beginning, middle and end. That's why I'm an accountant. Working for an entrepeneur is just like what you describe - you start off with a plan, when it's not working, you change course, and re-set your direction. Soemtimes it's tough for the team to follow the plan, but the trick is learning to forget about what you were going to do - that plan has been ditched. Focus on the new direction, and don't worry there will be a new one if this doesn't work out.

That also explains why i can't get past page 77 of "The Girl with the Dragon Tatoo". Too much character development and names I can't pronounce.

I used to like John Grisham, but he made the lawyers into heroes. And we know what a stretch that is...... Sorry Lee.

See you Saturday.


Anonymous said...

I've been on a soul and Motown kick for the past few months. It really reminded me how much music has helped me to make space to feel what I need to feel, rather than pushing myself too hard to be okay with whatever sucky thing is going on.

Anyway, not that you need advice on how to avoid bottling emotions on the one end of the spectrum, or getting caught in pessimism on the other... it seems like you strike a better balance than most adults I know.

Do you and Aunt Isy watch 30 Rock? If so, here's to avoiding being like Avery Jessup in last season's finale (yelling at her reflection in the mirror to "Clamp it down, Avery!" this is the second time this week I have tried to explain a very funny moment from TV... it's funny, trust me).

Ramble, ramble.

Thinking about you Uncle Bob and Aunt Isy! Much love to my awesome cousins too! I love you all so much!


Lymphomaniac said...

Mike and Julia,
Thanks for the encouragement, and the videos (The Miracles and the Muppets -- a nice unintended combination). Must be the James Brown avatar that inspires people to send me that kind of thing...