One More to Go!

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I'm supposed to receive my final chemotherapy treatment on Friday. What a long road since I was diagnosed last October. Like a dream, a meandering, colorful, bad but poignant dream, it seems like it both took forever but also passed in an instant. Like a frame around a painting, setting it apart from anything else that might distract the eye, the preciousness of my life feels framed by this experience.

I am determined to find pleasure every day. To give up rushing, cramming one more task into each five minute increment, pushing myself relentlessly forward into the next accomplishment. At the same time, I am also determined to stay conscious of how I am passing my time. Accomplishment feels good when it's in proportion with rest and exercise and pleasant companionship.

For those of you coming up behind me on the cancer treatment path: I remember fearing food would never taste right again, that I would never again feel a joyous bubbling over of healthful energy. I am here to testify that both experiences are possible, even while chemotherapy is still in full-swing. Taxol is not Adriamycin. All chemo is not the same. Trust your own resilience. You will get your life back.

Ragnar Relay

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Though I feel great in every other way, the neuropathy got a little worse this week - nothing super-uncomfortable, just a little numbness in my toes. But apparently this raises enough of a red flag to possibly postpone chemotherapy again.

The verdict came in late this afternoon: Assuming my white count is better. I'll get chemo tomorrow, again only 80% of the standard dose.

Of the ten Taxol treatments I've received so far, only two were full-dose, one was 88%, and the rest were eighty. Who knows what that means in terms of my future cancer prognosis. All I know is: just two more chemo treatments remain and I'm VERY eager to be done.

Another thing – In the three weeks after chemo ends and before radiation begins, I'm going to do my best to cordon off entire days just for me. A lot of them. No deadlines, no appointments, not even social commitments. I had a surprise day like that Tuesday when chemo was postponed and I was happier and more relaxed than I've felt in a long time. I need more days like that.

Life with Millie (and Breast Cancer)

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Rolling

The latest... More of my videos here.

Every time I go to the cancer center there is a preliminary routine beginning in the outer waiting area. First, I'm festooned with a lovely plastic wristband with my very own personal barcode. I'm then called to a little room with three chairs to be weighed and to give a blood sample. From there, I go to a second waiting room, and finally, on to the business at hand.

Today's business was a checkup with my oncologist.

This happens every few weeks and the routine is also predictable. Nurses aides come in, two at a time, to take my pulse, temperature, and blood pressure, one working on each side. Jim calls them the pit crew. And then I strip to the waist, put on a scratchy cotton gown and wait wait wait. The doctor comes in, asks some questions, and examines me head to groin. After which I'm allowed to put my clothes on and ask my questions.

Today I was told six things I have not heard before:

1. The risk of recurrence with my type of breast cancer (hormone receptor positive) actually gets WORSE after five years rather than better.

2. "You WILL be taking aromatase inhibitors, there's no doubt about that." This was delivered with bug-eyed emphasis. My doctor had mentioned these drugs before, typically given to HR+ women who are post-menopausal. When she brought it up before, it was a possibility, something to consider, once my five years of Tamoxifen are behind me. Apparently there is no longer a gray area.

3. "It's not like the old days when you'd see those scary pictures of women with their arms blown up huge." I've seen those scary pictures and didn't realize that lymphedema didn't necessarily result in that. She says she mostly sees it in her heavier patients though occasionally in thinner women. "I'm not God," she tells me, "but I don't think you're going to have lymphedema. But if you do have any swelling, you'll call me right away, and we'll manage it."

4. One of my cancerous lymph nodes had a cute, crafty-sounding nickname. It was a "macro-met" or macro-metastasis. In other words, a big one. (Not good, but I knew that already.)

5. "Your white blood count is too low." Actually, this tidbit was delivered by voice mail as I drove home. Apparently the doctor didn't get around to looking at today's blood results until after I'd left. I was supposed to come back for chemo tomorrow, Tuesday. Now it's postponed until Friday. And next week's is postponed until next Friday.

6. When treatment ends, I am to see my oncologist every three months for two years, then every six months "for a long time" thereafter. Some doctors do less after five years, but mine does not. "Not with my younger women anyway," she said, eyes bugging again.

I know, I know, breast cancer is more aggressive in younger women. Five years does not mean free-and-clear for me. I was node-positive. I had a macro-met.

Tamoxifen. Lymphedema. Aromatase inhibitors. Will my vocabulary ever cease this incessant expansion?

Roll with the punches, Amy, roll roll roll.

Fail Vlog

Here it is, the inside scoop on what happened when I went for chemo on Monday. Plus some laughs and cute Millie-tude...

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Red Flags on Parade

Wild edibles, hummingbird, house cleaning, and a spontaneous dance party... More of my videos here.

Today I was uploading and annotating this latest video on Youtube, watching myself clear my throat mid-sentence. I do that a lot lately, never noticing the habit until seeing it over and over in my videos. It seems there's always just a little bit of fluid stuck in the back of my throat.

Jim says this began after my mastectomy.

Not a big deal, I told him, perhaps a leftover side effect from the anesthesia. It can take a long time to clear the anesthesia drugs from your system.

Or maybe it has something to do with the chemo.

But today a new thought stopped me cold: Could this be cancer? I was frozen for a long instant, as if a heavy weight were crushing my chest.

I've heard that a subtle cough, or a minor ache, persistent but not alarming, can turn out to be the first sign of metastasis.

But then my lungs sucked air and I shook off the fear, got back to the task at hand.

It's probably nothing, I told myself, and I believe it probably is nothing. But, just to be on the safe side, I'll bring it up with my oncologist when I see her on Monday.

I suppose this is part of life on planet cancer, a regular feature of the landscape - where red flags fly over every ache and gripe, and the gravity of the disease you're battling, the preciousness of the life you don't want to give up living just yet, hits you over the head.

I hope I never get used to it.

Chemo Fiasco

Went for chemo today and ended up leaving without it.

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Back story: Because of some troublesome side effects, my chemo dosage has been reevaluated each week. My nurse has me call her to communicate my symptoms on Sunday night, which she relays to the doctor Monday morning. I arrive at 1pm and never know what I’m going to get until I get there.

This Monday took that last sentence to a new level.

I made a video explaining all that happened, not this one, the Chemo Fiasco video isn't ready yet, but stay tuned, I'll get it up soon.

In the meantime, the Cliff Notes, minus all the emotional drama you'll see in the video: My regular nurse was absent (out sick) and her replacement gave us three different answers when I asked about the dosage, first leading us to believe it had been lowered, then that it was exactly the same as last time, then finally (and accurately) that it was raised. I didn't know what information (or misinformation) my doctor had, and the doctor didn't have time to talk to me directly, suggesting instead that I leave and come back another day when my regular nurse was in.

The nurse was impatient and confused. It became obvious that she was unable to provide the info I needed. I had to choose between going ahead with a raised dose of chemo without understanding the doctor’s rationale or feeling certain that the doctor even knew what I was currently experiencing – or else coming back the next day.

It takes a lot to gear up for chemo day. Emotionally, it’s harder and harder each week even though the chemo experience itself gets easier. Jim had taken the day off to support me this time. This has not been our usual routine, but because I was struggling on my own, we decided to sacrifice a vacation day so he could stay with me this time. On top of that, my car is in the shop, not to mention the fact that the hospital is an hour from home and I had plans on Tuesday. "Come back tomorrow” was not as simple as it sounds and by far not my first choice. But ultimately, it seemed the only viable option.

And it worked out just fine. I got to talk to the doctor directly on Tuesday morning, my good friend N~ drove me to the cancer center at noon and J~ met us there. Chemo went fine, just one needle stick, same dose as last week (I'm still at 80% of the standard dose).

Another day on Planet Cancer, and by far not the worst...