Bare Headed Lady in Here Be Dust

The days and weeks following the end of active treatment fill with mini-celebrations of the type one might otherwise take for granted. Shaving my chin hairs with a safety razor again. Switching from extra-soft toothbrush back to soft toothbrush. Being able to resume sleeping on my stomach without discomfort.

On January 3 (11 weeks 2 days past the end of chemo and 29 days past the end of radiation) I ditched the too-large (but still supportive) sports bras I had worn since my surgery last March and returned to my regularly-sized bras. And – for the first time since going near-bald from chemo, I spent the full day bare-headed (but now with some hair!) in public, including shopping.

I also – for the first time since my biopsy last February – performed a self-exam on my left breast. It’s been cut into and fried, but that is no guarantee that it will remain cancer-free; it means only that my odds have improved against the same cancer returning. Breast cancer comes in at least ten different varieties, so it’s a crap shoot however you view it. Self-exams of the affected breast are still recommended, as are mammograms.

But my fingers have had to learn a new topography. Beneath my skin is, I assume, a combination of seroma (a fluid-filled pocket where the tumor had been) and scar tissue. Radiation shrinks the tissue further, even after the end of treatment, so I wanted to also get a baseline feel. My breast landscape may well continue to change.

The tricky part is that treatment leaves a hard, lumpy area. If I had never had cancer and my fingers felt what they feel now, I’d be on the phone to my doctor immediately. Fortunately (as these things go), I’ve been aware of the seroma since my lumpectomy. It used to be considerably harder. Then it softened somewhat. Then radiation tightened things up again, but differently than before.

What with all its new wrinkles and lumpy stiffness, my left breast has undergone a personality change. If my right breast is lounging and sipping Mai Tais on the beach, my left breast is jacked up on caffeine, working on deadline in a cubicle. As self-exams go, my right breast remains its happy-go-lucky self and offers no surprises. (May it remain so!)

I have now finished my first month on generic Arimidex. Fifty-nine (at least) months to go.

My meditation doodling continues:

Large size

On Jan. 5 I had my follow-up with my medical oncologist. Immunity measures continue to be a bit wonky. My white blood cell count is still a little low and has dropped a bit more from last month. Neutrophils have also dropped but remain within normal range. Lymphocytes are climbing and are almost back to normal, while monocytes are mixed (normal numbers, high percentage). Radiation lowers immunity even after treatment ends, but those numbers should turn around once my insides finish, er, cooking.

Am happy to report that my anemia has been sent packing. My red blood cell count, hemoglobin, and related readings are awesome, very close to baseline (before chemo). Platelet count is climbing and within normal range; mean platelet volume is just a smidgen below normal and climbing. My next follow-up is not for three months, which seems like forever compared to what my treatment schedule had been.

Most of my questions to the doctor were procedural, e.g., making sure it’s safe for my dentist to take X-rays in April, since I had finished radiation in December. I also reported my very few, very mild hot flashes, which are a typical side effect of Arimidex. They’re not particularly bothersome at this point but they are noticeable, as in, “Hey, I remember you from menopause!”

But I did want one clarification from something my oncologist had said in December, which had me reviewing my notes and going, “Say what?”

When he had recommended chemo to me last April, he had based it on my intermediate Oncotype-DX score (22) along with my age. At 55, I simply had more years at risk, he said, such that chemo could provide added benefit – in theory. I had taken a few days, conducting online research and talking to people, to make my decision and had ultimately agreed with his recommendation. I still agree with it.

Last month, he said that they had “overtreated” me and had given me more treatment than they would ordinarily do. I had brought up his April recommendation back then, and he had replied by saying my lymph nodes had been negative, which had been “the most important thing.”

Well, he knew they’d been negative back in April, too. So – Huh?

Back at home, I had dug out my notes and then wrote in my journal. I made an interpretation based on what I had heard, so my request for clarification on Jan. 5 also served as a reality check for me. Had I interpreted my oncologist’s statement correctly?

I had written this in my journal on Dec. 9:

[excerpt start]

So that is one helluva mixed message, and I need to learn just what he meant, and why he said what he did. Change of heart? Change of protocol? Why tell me this?

From what I have read, I believed chemo was the right call and still do. I am also invested in it, having put my body through all that. [My oncologist] telling me he had “overtreated” me (his word) is like his saying, “Whoops.” No one wants to hear that – and I happen to disagree. …

But he had made a very convincing argument on April 22, and my readings and discussions with others had backed that up. [My radiation oncologist] had said that my case was borderline for chemo, but he also agreed with the treatment.

Chemo is now poison under the bridge, so why raise what sounds to me like second-guessing? And does this mixed signal have any implications down the road if I develop chemo-related sequelae? ....

This bothers the heck out of me, but it would bother me a lot more if I didn’t think that getting chemo was the right choice.”

[excerpt end]

On Jan. 5 I said I wanted clarification on what I thought was a mixed message. My oncologist replied that he had used the word “overtreated” deliberately – in case another doctor told me I had gotten overtreated.

I said I associate the word “overtreated” with a kind of “Whoops,” and added that I did not see my chemo as a “Whoops.”

My oncologist said that no, this was not a “Whoops.” (How’s that for doctor-patient dialogue?) Could we have “gotten away” with less treatment? “We don’t know,” he added, and said that only time will tell whether I truly had been overtreated.

Frankly, I think there’s really no way to know even with time, unless future clinical and longitudinal studies become so precise that they can pinpoint my risk/benefit – and even then, there’s no guarantee that I wouldn’t be an outlier.

Most important, I received clarification to my satisfaction, even if the clarification itself is somewhat murky. Cancer treatment is as much art as it is science. I am somewhat amused that my oncologist used the word “overtreated” to beat other doctors to the punch, though I can see the value in hearing it from him first. That way, I could at least go, “Huh?” and get his take on it.

I present all this by way of saying: Don’t be afraid to ask your doctor for clarification. One word can be interpreted in different ways. As it turned out, my interpretation differed from my oncologist’s, so I’m glad I asked him just what he meant. And I’m relieved that he did not mean, “Whoops.”

Last updated January 06, 2015