Monday, July 30, 2007

not really over




I slept straight through the weekend and woke this morning to shooting pain in my breast. Squeezing it tightly is the only thing that relieves it, but I went to work today and opportunities to do that were limited. So I'm still feeling sick from the treatment of something that didn't make me sick.

This NYT article on the difficulty of managing cancer care caught my eye right away. I can't imagine juggling appointments and bills and making decision while actually being sick. I was barely healthy enough to handle the relatively straightforward care for DCIS.

http://www.nytimes.com/2007/07/29/health/29Cancer.html?ex=1343534400&en=96695688896a44eb&ei=5124&partner=permalink&exprod=permalink

flowers


Tuberous begonias always look so tropical.

Friday, July 27, 2007

almost done



I've spent the week having radation twice a day and working on jigsaw puzzles in the waiting room. With my usual talent for dissociation and denial, I think more about the puzzles than what is happening. The experience of radation therapy is painless but oddly unpleasant - the moving table, the moving machines, the distictive three note buzz as the machine turns on.

In three hours it will all be over. I've been tired all week - napping after each treatment - but that's been the worst of it. My nipple is a bit tender and there is a deep, vague ache in my chest wall. Basically its all been tolerable and now it is almost done.

Sunday, July 22, 2007

Harry Potter - no spoilers



I was young enough to line up at the bookstore before midnight to get my copy, but I fell asleep that night at chapter 3. With several distractions and a little sleep, I finished this morning at nine.

I liked the Sopranos ending better. I hate closure and explanations and all clues tied up.

But I was very pleased with my favorite character Snapes.

Friday, July 20, 2007

do not want



I spent most of the day (a summer day, lovely as only an Alaskan summer day can be) lying on a hard table in a windowless room. Head back. arms over my head, trying to hold still as my nose itched and my ear itched and my muscles twitched in protest. Lasars sited on my tattoes. Big panels swooping towards me. At one minute four people in the room looked at my breast and shouted coordinates to each other and scribbled on me with markers. Then everyone withdrew for ten or twenty minutes while the machines swooped and whirred again.

Every single person warm and courteous. Showing me the films, showing me how the radiation field will spare my lungs and my other vital organs.

I should have nothing to complain about. I will have a new technique, partial breast irradiation. The third person in Alaska to get it. Five days instead of six weeks. Fewer side effects. Lucky, lucky again. Monday to Friday next week and then this story is over.

This scares me. I hate it.

Thursday, July 19, 2007

learning anything ?

I've been searching for anything I've learned from this experience as a patient after 27 years in nursing.

First of all, I've met very few nurses. And they have flitted through without making any impression.

The physicians, in general, have been wonderful. Now I chose them carefully, with access to inside information most people don't have. And I managed them carefully. Still, the surgeon, the radiation oncologist, and the medical oncologist have been heroes. They assessed my mood carefully, responded thoughtfully to questions, and gave me plenty of time. When I asked for their recommendations they gave them and their rationale (they all know more about this shit than I do).

But the two people who stand out in my mind are techs. Barb massaged my back as I laid face down on the table with an unseen someone inserting wires into my breast. I swear I would have pulled back and run without her help. And Scott who chatted softly as I was scanned and tried to hold still as the machine swooped over me.

I wonder if I have ever given anyone what they have given me.

Sunday, July 15, 2007

feedsack nine patch




Doreen found this vintage quilt in a thrift shop in Oregon (I never find treasures like this!). It is all feedsack fabrics. It is not made well. The quilt is tied at odd intervals. It is double sided, and instead of binding it looks like it was folded and stitched. I though about leaving it intact, but I can't bear it. I feel greedy about this, but if I open it up and back and bind it I'll have a nice lap size antique.

Saturday, July 14, 2007

Scanned, marked, tatted



One of the three tattoos for radation.

Three medical appointments in a week. Negotiations with the hospital "financial counselor" (very helpful) and the insurance company (not helpful).

The medical oncologist surprised me by NOT recomending tamoxifen. He said the small decrease in reoccurences does not outweigh the toxicity and side effects of the drug. I'm more afraid of strokes than breast cancer, so I will take his advice. And I'm thrilled have one thing less to juggle.

The final radiation simulation will be next Friday and I will start radation on the 23rd. It may be possible to do high dose partial breast irradation - twice a day for five days instead of daily for six weeks. That would be wonderful. I could be out of this cancerland (at least temporarily!) by the begining of August.

Tuesday, July 10, 2007

Italian gore and neo-noir

These days I am preoccupied with my next medical appointments, worried about what will happen next, how much it will hurt, and how much it will cost. I can't sleep more than three hours at a stretch. I can't concentrate. I'm not getting anything done.

But I can escape. My life-long enthusiasm for crime fiction and horror movies remains intact. They have to be dark. Intense. Death, mutilation, and gore are good. No whining. I can fall into these stories completely.

Since I've read all of Ian Rankin and Lee Child I am now reading Charlie Huston and Ken Bruen. The rest of David Wellington. Tough guys. No pink, no women breathlessly explaining how they are deeper and better people.

For movies, I am totaly absorbed in Dario Argento's work. Deep Red, Suspira, Demons, Stendhal Syndrome. I ignore what little plot there is to get lost in the sounds and the visions.

I am careful not to judge others by their enthusiasm for genre fiction. I know smart, tough, funny women who watch Lifetime movies and read romances.

My tastes are different. Right now I am very grateful for my favorite books and movies.

Monday, July 9, 2007

another medical office



My corn snake, Sunshine, lounges in the forget-me-nots in the shady part of the garden.

On to see the radiation oncologist today. Everyone I met there was intelligent, warm, and funny - so I have to complain about the waiting room and the decor. A metal column in the middle of the room, with a gas fireplace (welcome even on a July day in Alaska) in one corner and a big aquarium above it. This gave me a odd sensation of swimming fish soup. Alluring jigsaw puzzles laid out on generous tables near comfortable chairs. I love jigsaws, but I immediately begain to worry about how much time I was going to spend in this room. The usual basket of hand knit hats. (I will keep my hair but I will knit hats for the basket.) Assorted water and teas and juices and old magazines. I looked at a thick glossy international travel magazine, wondering if I was ever going to travel again.

They made me watch a long boring video about radiation therapy with Elliot Gould. This was done in a private, cozy little closet where I fantasized about "Capricorn One", one of my favorite 70's paronia movies. Starring Elliot Gould. I turned it off and rewound it a little early.

I showed my breasts to four more people. I have done this so often that my first impulse, when people ask how I am, is to lift my shirt and show them.

More potential good news. I may be a candidate for partial breast radiation, which takes five days instead of six weeks. On Friday I will be CAT scanned to see if the cavity is deep enough and my thyroid, lungs, and other breast are far enough away to do this.

Saturday, July 7, 2007

Audrey's quilt



This is the only quilt I've ever made from a kit - April Cornell's Poetry collection. It came in an irresistable fabric box and went together quickly and easily.

Thursday, July 5, 2007

Cynthia's quilt




Cynthia lives in a Greenwich Village loft. Not a place for tradional patchwork. So her quilt is white/black/red in a contemporary pattern, Boston Logs. I machine quilted it with a lovely varigated thread (white, gray, black).

I was so thrilled when I saw this in their home. A NYC downtown quilt!

the bad attitude part


A perfectly healthy person is turned into a cancer patient almost overnight. There is something radically unhealthy about this.

I am one of those employed, insured Americans - like the people in "Sicko". Of course I have to stay employed to stay solvent and insured. So I go back to work after a painful biopsy, after getting a cancer diagnosis, a few days after surgery, after every radiation treatment.

Speaking of money, the biopsy alone cost about $4,000 and I'm not sure all the charges are in yet, a month later. Yes, my insurance will cover much of it. But I won't be saving for retirement, maintaining my home, or buying a new laptop anytime soon. The only part of the economy I'm supporting is healthcare.

If I'm investing in my life, buying time in the future, I'm not sure that's a good deal. I might be buying years of poor health, years when I don't have enough money because so much went to pay for those years.

My mamos and PET scans are scattered all over the city. Eight different physicians billed for their role in the partial masectomy - two of them I never saw because I was lying face down on a table with a hole for my breast and they were underneath injecting it. Another, a pathologist, seems to be in Louisianna. I have appointments with a surgeon, a radiation oncologist, and a regular oncologist marked on my calender. And, because I had breast conserving surgery, I have another mamogram this week.

This sucks.

Wednesday, July 4, 2007

Stage 0 Grade 3



Poppies are blooming in my garden.

Before I was distracted by rivers of chocolate puke, I was planning to use this to sort out my experiences to date with a little bit of breast cancer.

It started with a mammogram. Actually, it started with my screening colonoscopy, which I finally got around to doing at age 53. One polyp removed, very nice drugs, and I got cocky. It had been five years or so since my last mammogram, so I scheduled one for a Saturday morning. Got the call Tuesday morning - a stereotactic biopsy was recommended for the microcalcifiations that have been there since my first mammogram ten years ago.

The biopsy was June 1. (That's a long funny story for another day). The radiologist kindly showed me the calcifications they had vacuumed out, explaining "This one looks benign but these over here look like DCIS". That's what I expected from the mamography report, ductal carcinoma in situ. That "in situ" is good news, medical for "not spreading".

The next task was to pry the biopsy report out of my internist. She ducked my calls for two days and finally sent a message that I would have to come to the office for results on June 6. She came in obviously distressed and blurted out "Its bad news. You have breast cancer. You need surgery. Then chemo and we'll have to see about the nodes..". She was so flustered I took pity on her and stopped her. I told her the surgeon I wanted to see and asked for a copy of the report and she fled. She sent the med tech in the the number of the surgeon (which I already had) and I managed to get as copy of the report after several more requests. By then I was anxious. DCIS is not life threatening and not treated with chemo. But the report was basically what I expected. DCIS with comedonecrosis - the worst kind of a not-so-bad diagnosis.

I'll deal with that doctor later.

The surgeon saw me two days later. "Can't we just remove everything and get it over with?" I asked. "You don't really want to do that," she told me. On reflection, she was right. Partial masectemy with sentinel lymph node biopsy on June 15. The pathology resultts on that were more good news. The nodes were clear, no signs of invasive disease, estrogen receptor positive.

Next: follow-up mamogram, vistis to the oncologist for aromatase inhibitor prescription, and the radiation oncologist.

And pick Sookie up at the vet and clean up more chocolate poop.

Tuesday, July 3, 2007

So much for my plans


This morning I looked in the mirror. Eighteen days after a partial masectomy and sentinel node biopsy, and the last traces of bruising were gone. I put on the underwire bra I haven't worn since surgery, and a close fitting silk tee I'd been avoiding. Looking good! Driving home from work, I planned this post. A friend would photograph me, tits and all, in that pretty shirt. The post would be titled "Recovery!".

I opened the door to find a tidal wave of dog excrement - big watery puddles with chocolate and tin foil. Followed the trail to the souce - Marge's chocolate calcium chews. Sookie was the obvious culprit - she was vomiting and shivering. She's a little dog and couldn't survive that kind of volume depletion. So we were off to Pet Emergency. I left her and a deposit of $450 and we'll see what happens next.

I blame Twisty

Somehow I stumbled upon the iblamethepatriarchy.com and was hooked. Not that I aspire to Twisty's intelligence, rage and humor (or her great photography). But suddenly blogging sounds like a minor art - like my garden or my beadwork.