Wednesday, March 25, 2015

Watching and Waiting (Including My Own)

NewsmaxHealth has a brief piece out on Watching and Waiting.  And I do mean brief -- just a few paragraphs long, written by a survivor of an aggressive Leukemia (not someone who watched and waited herself). This isn't a research article -- I've declared a moratorium on them, and refuse to write about any of those "Is Watch and Wait legitimate?" articles until I see some definitive evidence one way or the other, and that's not happening any time soon.

No, this brief article is a really basic introduction to what W & W is, based on the idea that most of us (probably including that of us who watched and waited) think of cancer as an emergency that needs to be taken care of right away. But, of course, not all cancers are like that, including, of course, Follicular Lymphoma. Some of them don't require immediate treatment.

And that really throws people -- not only patients, but family and friends, too. I had lots of people who questioned the decision, wondering if this was really the right thing to do. It took me a while to rally accept that it was, so I don't blame them for thinking that way. I know that were just worried about me.

One quote from the article is especially important:

“Watchful waiting should be considered an active strategy, as close monitoring can give you reassurance that your cancer is stable, and not aggressively growing. If a cancer is found to be progressing during the monitoring stage, then additional treatment strategies can be started.”

That's a quote the author took from the Mayo Clinic website (sorry, no link provided in the original), and I think it's important to remember a key phrase from it: "Watchful waiting should be considered an active strategy." It's not just sitting around waiting for something to happen. It's about seeing the oncologist regularly, looking for signs that things are progressing, getting regular blood work, feeling the ol' nodes every now and then -- monitoring what's going on, while trying hard not to obsess about it. It's a tough balance, but it gets easier with time.


Now, as for my own "watching and waiting" of a different sort, I am pleased to announce that.....I have a new oncologist. Finally.

When I had my last appointment with Dr. R in December, I was told that someone from the office that I would be switching to would be in touch in about a month. The office is a little closer to home, which is nice, but it's a branch of the same hospital-affiliated practice that Dr. R was a part of. There are three oncologists in the office; Dr. thought two of them would be good for me. Of course, I ended up with the third, an older doctor who looks great, but who may be close to retiring.

It took a while to get this appointment. They didn't call within a month, as I had been told. So finally, on Monday, I called Dr. R's office to find out what's been going on. I was told they'd take care of it, and to call back if I didn't hear from the new folks. Two days later, I got a call from them. I made an appointment for the first week ago. 

If this is a kind of "watching and waiting," I broke that rule about being active. I should have called much earlier, but I kind of put it out of my mind. I haven't felt any physical reason to need to see an oncologist, which is great. But I need to be good about seeing one regularly. 

So I'm happy to be moving on to this next chapter of my life as a cancer patient. I will certainly let you all know how it goes.


Anonymous said...

Wanted to draw your attention to this story about a NZ cricketer Martin Crowe who was diagnosed with "...follicular lymphoma two years ago but it went into remission. Late last year, however, a more aggressive form of the disease, double-hit lymphoma, developed. Crowe said he had been told only five per cent of sufferers survive more than 12 months."


Lymphomaniac said...

I've been following this sad story since Mel from NZ commented on it. (Is that you, Mel?) I don't know how accurate that 5% statistic is, though from what I know, double-hit is a tough diagnosis. The good news is, like most cancers, researchers are getting a hold on the genetic basis for double-hit, and in time, there
s a good chance they will be able to deal with it.
That said, I have a good sense of what Martin Crowe means to New Zealand, and I think about my own heroes, and how I would feel hearing the news about them. I'm sorry you all have to share this pain.

Anonymous said...

Hi it wasn't me but Martin Crowe did get to see the Black Caps in the World Cup final unfortunately we lost to the aussies, we hate losing to them but our boys conducted themselves well in the face of very bad sportsmanship from the aussies.
As you often say statistics are open to interpretation and sometimes our mood,how we're feeling about having cancer even our personalitys play a part in how we see them.