Monday, May 23, 2011


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.


Ally said...

Oh my word! I love your paintings!! :D

Anonymous said...

Love you Amy. Loved seeing your garden, your art, your mom.

...When they put a pressure cuff or any kind of cuff on your arm, have them pump it manually, if that makes sense. What you're feeling is not unusual.

Miss you tons.
Look up in the sky and think of me...think of an image in the clouds and I will too.


Anonymous said...

Post before -MH

Anonymous said...

Almost spontaneous response: Amy rocks! As Carol said, "You've got the juice." Your last anonymous noter deserves a warm hello from me, your mom. Great love, as always.

Anonymous said...

Hi Amy,

Yeah, there's no guarantee that any one of us won't get hit but a mack truck tomorrow but I think that most people do generally believe that they will be healthy and get old. So to have to continually deal with this assault of hard news is a lot to process. If anyone can get their arms around it, it's you but that's not to say it's easy.

Thinking of you and sending some sunshine from California.


Anonymous said...

You are an amazingly strong person! I have a few thoughts about your friend....

Has your friend looked into potentially having Lyme disease? Some people go indiagnosed for years and it can take on the symptoms of other illness such as Mono, MS,to name a few. There is much controversy amoungst the medical community on this topic and I've heard of people going to a multitude of Drs. before they find one that is Lyme literate or is willing to treat for Lyme disease. Just a thought but it sounds like this may have been something your friend explored already?

Shafeenaaz said...

Amy, you look good in white :)

Anonymous said...

I wonder if my vocabulary will ever contain normal words instead of Tamoxifen, mets, etc. Let's hope so! I just found your blog but already am a huge fan. Looking forward to reading more.