Moving Day, Again

Today Mom and I moved all my stuff, again, to my duplex where I'll be spending the rest of the year. Well, mostly Mom packed and moved and did laundry and cleaned, and I unpacked. I felt less pathetic than last time; I did a little more than the sitting and pointing that was the last couple moves, but I still found myself lacking in energy and fortitude of the arm (the thrombophlebitis is a little worse today). So, I am very grateful for a Mother to do the heavy lifting (literally and figuratively).

There were also some friends to welcome me home - and they all wore their headscarves for the occasion!

Dante the Lion

Fredrich Bear the Great

Big the Dog

Gorge the Monkey
(This picture is especially for Adele, probably the youngest reader of this blog, who often wants to see pictures of monkeys - I don't know if a blue sock monkey counts, but it's the only monkey I could find in my house!)

Bald as a ping-pong ball

Today it happened. I walked out of the house to go to the store and totally forgot a hat or scarf. I probably wouldn't even have noticed before I got out of the driveway if my mother hadn't pointed it out. And something about it being dark or evening or today made me really just not want to go back for a headcovering. So I went to the store bald.

And it was really anti-climatic.

I didn't get arrested or stared at. No one came up to me to tell their cancer story or ask me about mine. It probably helped that I went to the pharmacy and stood in line with all the other sick-o's, so that was perhaps a more "acceptable" place to have alopecia.

I would note that the breeze feels pretty nice on my scalp.

Like I said. It was really anti-climatic.


Lest this post be the same, here's the sketch from Free to Be You And Me that's been going through my head since I lost my hair. It's the line "bald as a ping-pong ball," even though I'm not quite that bald:

Therapy 3.7

I had chemo today and am now done with round 3! The score comes out on Monday. My mother pointed out that if it's below 8 (8 being the new 6 due to a change in how they count), I may have to stop saying I have cancer.
Does this bump me into "milk it for what it's worth" mode? Possibly, but I can still rightfully claim to be on chemotherapy, and that stuff really does make me sick on my "big" week.
Do I have some trepidation that for whatever reason the AFP will start going up instead of down and I'll have to be sick for a long time or face mortality or something? Yeah, that too. Having text book germ cell tumor cancer almost seems too simple - it grew quickly, was discovered early, hit a young woman, responds well to a time-tested chemotherapy regimen, doesn't spread to my other ovary, doesn't come back. (oh yeah, except the blood clots). The odds remain in my favor, and my bad luck has to run out sometime, eh?

Meanwhile, worrying doesn't keep me up at night. I feel too good for that. I felt almost guilty, bouncing into the crowded chemo room today, taking my poke in the port without the numbing spray, talking to my nurse Shirley about the hikes we like to do around Tucson instead of about my bowels, and leave knowing that while most people leave feeling tired and various flavors of crummy, I would probably feel good enough to go shopping and bowling that afternoon (for t-shirts my mother will crochet into rugs and for my work, respectively) .

Although . . . (1) I did wake up this morning with what is probably some more superficial thrombophlebitis in two spots on my other arm that makes it hurt a little to straighten and forces me to bowl granny style or left-handed, the former being solidly more successful than the latter. This is not surprising, as my blood has tested as too viscous the last 3 times and so we're re-adjusting my dose. And (2) I think I've started to have little moments of hot flash. It's hard to tell as the weather has taken another turn for the warm, but in my situation, hot flashes would also not be out of the ordinary: it turns out that both chemotherapy and having 1/2 the ovaries my body is used to can mess with your hormones.

The Fall Fashion Guide

Fans everywhere have been clamoring to find out: What's on the head of the baldest gal' on the block these days?

Clamor no more! Wonder no longer! The Fall Fashion Guide is here with the most recent additions to Margaret's collection of fabulously cute headgear.

Turbans are definitely "in." This stylish wrap (available at Plowsharing Crafts, St. Louis' premiere fair trade boutique) was a birthday present (Thanks Sam & Rachel!), but it took some weeks perfecting my Turban Technique to push it into my "faves" stack for the fall.

Crochet hats are doubly "in!" These two lovingly hand-made toppers (by a wonderful woman in Topeka - Thanks Carolyn!) top my list for warmth and adorability.

And knit hats are "in," too! You just can't beat the variety of yarns with colors inspired by Arizona and hand-made by a wonderful woman in West Chester (Thanks Cynthia!), except if it's with the halo effect made by eyelash yarn on the brim. Dust off your accordion for an accessory that really shows the world your sense of get up and Polka!

As the weather gets cooler, and highs dip below the 90's, (or if right-wing ultra-fundamentalists take over the country), I hope this guide gives you some ideas to keep your noggin comfortably covered and warm, without sacrificing your good fashion sense.

Cancer and . . . Accounting

When I took on the project of killing Grazelda, it basically became my full time job. On the 5-day chemo weeks there's not much time for anything else after 4 hours of chemo, the drive, and the requisite nap. But there's plenty to do on the 1-day chemo weeks, too: Learn all my drugs (they now take up half my kitchen table), keep track of their uses and doses and interactions, memorize the Vitamin K tables, go in for bloodwork, brush my teeth 4 times a day, sort through insurance claims and bills, tabulate my medical mileage, practice accordion, post on my blog . . .

I don't think I've mentioned health insurance yet in this forum, probably because it's such a hot issue, and I don't know enough about what is going on nationally to write intelligently about health care reform. For now it's enough work to keep track of my own insurance and bills while dealing with chemo. I do have health insurance, through my employer. In fact, I have pretty good health insurance, for which I am tremendously grateful, because to put it simply, cancer is not cheap.

I don't make myself do anything on my bad weeks or when I'm not feeling well, but I do keep track of all my medical expenses and match them with insurance statements and bills and receipts. [Okay, so, actually I do this for all of my expenses. It's not that I'm anal, I just enjoy seeing the numbers reconcile at the end, along with knowing about my cash flow. I started as unit treasurer in VS and I simply can't stop.] Now, medical bills get their own spreadsheet and have their own special challenges. For example, my co-pay for chemotherapy is $25 except on Tuesdays and selected Fridays when it's $15. (That sounds like something I'd make up, but I didn't.) Of course it took 2 months of trial and error, and a couple rounds of phone tag with the billing office to figure that one out.


Obviously, the health care system is very broken and much could - and should - be said regarding how to make it better. But here are two reasons I am grateful today:

1) Today I had a breakthrough moment with a bill from my oncologist I'd been puzzling over for weeks, and it made me realize how glad I am to be addicted to accounting. If I didn't derive a strange pleasure from recording and manipulating all that data it would be a large burden in what could be an already very stressful situation (research seems to indicate that cancer causes stress).

2) While I was scouring this bill, my eyes wandered over to the other column of numbers, the ones paid by the insurance, and a really, really big one caught my eye. Now, I know chemotherapy is expensive. Each treatment can easily run about $1000 (charged to the insurance). That much I had gleaned from skimming the insurance statements as they arrived semi-weekly. But this bill was more thoroughly itemized and it charged $7901 on this one line. It turns out that's how much the immune-system-booster-shot (Neulasta) I get on Fridays of the 5-day weeks costs: $8000 for one shot!!! Once again, I am so so grateful I have good insurance.

Cancer and . . . Pumpkin Soup

When you get cancer you're supposed to use it as a call to finally realize all those dreams you had been dismissing as impractical or putting off till later, right? Like making pumpkin soup in its own shell . . .


Success!! The pumpkin held, and the soup was good and salty enough that I could taste it. Thanks to Rachel for having the mad impressive muscle and steely courage to get it in and out of the oven.

Other happy events today included:
My mother arriving from Cincinnati.
Baking chocolate chip cookies.
My first ever impromptu accordion recital.

Living the Dream,
mp

True Confessions of a Cancer Patient

It was caught on film, so I guess I should confess: I went hiking yesterday.

Not like just a walk in the park, or a stroll in the desert, but a bona fide destination hike, like the kind if you came to visit me in Tucson I might take you on if I didn't have cancer: I got some friends together and hiked out to seven falls. It was a little longer than I remembered. By the time you get to the trailhead and all the way there and all the way back it turns out to be a little over 8 miles. The weather was beautiful and we took it pretty easy with plenty of breaks for water and snacks. My friend Rachel who's visiting from St. Louis even carried all my extra water. I was tired at the end, and had puffy fingers (from blood pooling instead of chemo-induced liquid retention. Yes!!), but I don't really have sore muscles today. And then in the evening, we went to the international festival downtown to enjoy the ethnic food and variety of local performers with international flavor.

Now, in some books this whole episode is entirely against the Rules of Proper Behavior for Cancer Patients. I mean, I feel a little bit like a fraud, telling people I have cancer when I can hike 8 miles and still have the energy to stay out late eating greasy gyros watching Bollywood dances. It would be a more convincing act if I spent most of the day laying in bed being waited on and lit candles and took bubble baths and started oil painting.

This not an inspirational tale about the woman with cancer who wouldn't let torturous nausea and fatigue prevent her from going out and proving herself. The simple truth is, I feel great. I felt great yesterday, so I went hiking and festival-ing and had a blast. I don't always feel great (see posts from last weekend), and then I do spend a lot of time laying in bed being waited on - a bubble bath doesn't sound bad. But I feel great now and will probably feel great for the next week. Besides, the accordion has so much more . . . oom pah than oil painting.

Here's the rest of the photographic evidence of Margaret's Unorthodox Cancerous Adventures:
(Rachel's the one with the hair).

Tonight's project is dinner. We're hoping for pumpkin soup in its own shell, but can't promise anything about the integrity of our particular pumpkin's flesh. The recipe is from here.

Today's Cancerous Disappointment: Movie theater popcorn (at the rental store) is unsatisfyingly unsalty.