"Been there, done that and have the T shirt to prove it..."

Yesterday was bad. Getting out of my La-Z-Bum chair to do anything winded me. My brain was fuddled.

I was supposed to go to work. After work, the spouse and I were supposed to go to Chiang's Gourmet for our 18th wedding anniversary. Neither happened.

I started feeling the creeping cruds on Sunday afternoon. By yesterday morning, they were in full blossom and stayed with me until the evening. The spouse went to Chiang's to get our dinners to-go, I crawled to the couch, and we ate our celebratory dinners while watching an old Lovejoy, a British television series that requires absolutely no brain or physical stamina.

Then sleep, sleep, sleep.

There's nothing I can do about this. I can't overcome it. I can't rally internal resources and ignore the chemo side effects. I can't do work. All I can do is sit or lay and feel/look/smell sickly.

Today is a little better, but not much. At least today, I can write.

I'm impressed with the chemo punch.

*******

A few days ago I cast a wider net among my artist friends, asking them if any would be interested in doing a henna tattoo on my head.

One artist whose work I've admired a long time wrote back to tell me he'd been through this. "Been there, done that and have the T shirt to prove it..." he says.

He added "No one really understands the effects of the treatments until they experience them. It simply defies verbalizing."

He's right, and I've tried repeatedly to put down in words what escapes accurately articulating.

It helps, believe it or not, knowing others who have gone through it and come out the other side relatively intact.

Intact, my friend says, but changed.

'nuff sed

Sick.

Bald.

Baggy.

 

A long blog slog

I woke the morning after my first Taxol to sore palms on my hands and the soles of my feet sore, also. My hands felt as if I'd been using a metal scrubber all night.

I had my second Taxol treatment this afternoon. We'll see what occurs.

Hot flashes have been rolling over me in waves. If I'm out in public and wearing a small cap to hide my bald head, I now have no problem taking it off. I hate being hot.

Damned menopause. Damned intense menopause because of chemo.

Recently as I was looking for a way to lower my body's thermostat, I remembered my first menstrual period. I was 13 years old and stuck in a car in Europe with the last people I wanted to be around, i.e. my insufferable parents. God, they were dull when I was 13, and old.

I started having a bad belly ache. I curled up on the back seat of the rental car. We were in Spain. At some point we stopped and I went to the restroom. I came back to the car and told my mother I'd started my period. Her response was "You're too young!"

At times, she wasn't the mother I'd hoped for.

My mother with one of her matador friends
Tijuana, 1967

We found a pharmacia and I was sent in on my own to purchase "feminine hygiene products". My mother wouldn't come in with me.

There was a young man behind the counter and I asked for the only thing I could think of, despite my embarrassment.

"Kotexo?" I asked. He knew what I meant.

My father drove us to a clothing shop and my mother, myself and my bag of huge bandages found a dressing room. It had been so long since my mother had menstruated that she barely remembered how to use the barbaric slings, pulleys and cottony products. I figured out an hour or so later that the she'd advised me to put the absorbent side out, and I had my first of hundreds of hormone-induced clothing crisis.

That was a memorable day.

In comparison, there were no fiascos on the last day I ever menstruated. No notification via pain, no ceremony in a foreign country's pharmacia or dressing room, and no mother to tell me I was too young.

This strikes me as a little sad. After having this uwwanted monthly bloodletting for almost 40 years, you'd think there's be a blatant sign of its end, as there was at its beginning.

Nope.

*******

My big toenails have turned dark. It's a side effect of the first round of chemo. They're also getting ridges that look like toenail tectonic plates. I think subduction may be occuring and new continents are about to be formed. I'll name the first new continent "Kotexo".

*******

Sitting, waiting for the bus

I wasn't able to go into work on Monday. I felt sickly, and opted out of dragging myself to downtown.

I do good and valued work for my employer, and don't feel guilty about taking sick days because I recognize that I'm not doing anyone any favors by being at work while I'm sick.

On Tuesday, I missed my express bus and took the pokey/stinky 358 into downtown. As the day progressed, I felt tired and wobbly enough to call my husband and ask him to come and get me.

I feel bad about asking him to come take me home. It's not green of me. I figure I can get away with it on occasion because I was green in pallor.


Me and my anonymous coworker on the train



And Thursday, I was heading out of the building, dragging my feet, when I ran into a coworker who takes the same bus as I. I asked him which direction he was going, and he said he'd driven in and "hid and rid", i.e. parked near a light rail station and taken the train in.

He's very, very bad.

He made up for it by offering me a ride home. All I had to do was ride the train with him a few stops south and hop in his car.

*******

Today was henna day. Yeah! That means the day had something normal and fun on the agenda.

Tina Koyama came over and did this week's henna tattoo.

Within an hour, Marvin Johnson and Carol Milne joined us to watch, comment, and drink coffee.

Marvin did the henna tattoo a few weeks ago, and Carol's doing one next weekend.

Tina wanted to do a tattoo that commemorates the 2011 Chinese New Year, the year of the Rabbit. She decided to paint rabbits on either side of my head, heading toward the front of my head, along with two Japanese phrases meaning "rabbit" and "health".

Tina's a multi-media artist, and has worked with textiles and painting. She was nervous at first, like all the other henna tattooists, but once she started and saw how easy it was, she relaxed and had fun.

When she was done, she told me she wanted to sign it. I said that was fine, as long as she didn't paint www.tinakoyama.com on my head. She opted for the Japanese spelling of her name.

She did a lovely job. I love my rabbits. I'll leave the henna on at least until tomorrow, and wash off the crusty henna at some point this weekend.

*******

My second dose of Taxol was this afternoon. The spouse and I drove to Capitol Hill and headed to the unfusion center. I remembered to bring my camera so I could take a better photo of the odd needle that goes into my port.

That's what it looks like. It kind of gets punched into my chest port as I take a deep breath. It doesn't hurt because of the Lydocaine I put on an hour before, but since it's such a thick needle and I have sensitive hearing, I do hear my skin pop or crunch as it breaks through.

Nurse Vicky drew the blood out for the lab work. My levels were good, so I get my chemo.

Yeah!

Ick

Icky day.

I now know the chemo feeling too well, and have learned to recognize it when it first creeps in. I've got 12 more weeks of this round, and I'm proactively dreading the dreading.

I've unsuccessfully tried to describe the sensation. It's icky. How's that for an ability to articulate the chemo feeling?

I received some good news on the genetic front. I did not inherit the known mutations for breast cancer from either my mother or my father, both of whom had breast cancer. 

For me, it's just the luck of the draw.

I'm adding this to my list of complaints I'm taking with me wherever it is we go when we die.

How will I know when my hair's truly growing back?

How will I know when my hair's truly growing back, i.e. not sporadically or clumpily?

Right now when I run my hand over my head, there's a little bit of bristle. I shaved it on Saturday, in preparation for Joline's tattooing my oddly-shaped canvas.

But the growth is irregular, and not very much for a week's growth. I'll keep shaving it as long as it's so spotty.

How will I know it's growing back, full force?

*******

The spouse and I went for a walk at Green Lake this morning. It was a short and slow walk. It's like someone turned the tap on my energy and it's all drained out.

It's a Taxol kind of day!

I'm losing my eyelashes. It's getting to be a challenge using mascara. 

You ever tried to do a comb-over with your eyelashes? It's really really really difficult and requires a steady hand good eyesight, neither of which I have.

I don't normally wear mascara, but it does make me look a little better.

Well, it did until my eyelashes started falling out.

*******

I came across an article about transit and all the hackers, wheezers, coughers, sneezers and snifflers that I ride it with:

"The relationship between public transport use and acquisition of acute respiratory infection (ARI) is not well understood but potentially important during epidemics and pandemics."

I know! I know! Tell me about it! Chemo has made me a mask-and-hand-sanitizer carrying germaphobe.

My satchel is like a Bartell's mobile unit, and I look forward to the time when I don't have to haul it around. It currently holds:

• Masks
• Lidocaine and clear bandages to numb my chest port one hour before treatment
• Hand sanitizer
• Tissues
• Anti-nausea pills
• Tampons (chemo has sped up menopause, so I don't need them anymore, but I'm hanging on to them to remind myself of the 40 years of menstruation that I always hated and never quite mastered, i.e. the good ol' days before cancer)
• A light hat to wear when I'm not comfortable going bald

*******

This morning I took a bus from the International District to downtown via the tunnel, then caught the #10 up to Capitol Hill. The bus to Capitol Hill was packed, and I learned that I should put my mask on before I get on the bus. It was SRO and I couldn't put one on while the bus was moving.

I love the granite in the Downtown Seattle Transit Tunnel, though its provenance caused a furor when it was first installed.

The rock is truly beautiful, and the patterns are mesmerizing.

*******

Today was my first Taxol treatment.

An hour prior, I had my blood drawn in one of the chemo chairs.

 Here's the paraphanalia for getting blood out of this turnip's chest port.

And here's what the paraphanalia looks like after the blood draw.
 

 

Here's the thingy that goes into the chest port and feeds the nasty meds into an artery. An RN preps the site and shoves a HUGE needle into the port. I'm then sent on my way to wait an hour for my meeting with my Oncologist.

I took a walk around Capitol Hill while the lab eyeballed my blood samples. When I met with my Oncologist, he reminded me of the fact that I was starting Taxol, and said some of my blood levels were low. After talking about it for a while, we agreed to go ahead with the Taxol today, and to have me do another round of those wonderful shots. 

Dammit.

He talked about side effects from Taxol, and the one he wants to pay particular attention to is neuropathy. He said it's more likely to occur as treatment progresses, and recommended I take Glutamine, which the Naturopath also recommended.

The spouse arrived and we headed over to the Infusion Center.

While the side effects may be less severe than the awful AC I was on until a few weeks ago, there was a small chance of an allergic reaction. As a result, the first infusion required my RN, a crash cart and a respiratory therapist. And a bed. No chemo chair. 

Here's me, waiting in the bed.

Here's the RN preparing the test run.

The Respiratory Therapist came in and entertained us. He told us he had a new joke:

What did the doe say when she came out of the woods?

"I'll never do that again for two bucks."

Nyuk, nyuk, nyuk.

I passed the Taxol test with flying colors. The RN turned the drip on "11" and gave me the full dose. While the drip dripped, the spouse and I talked about a trip we're planning to Iceland, when treatment's done and I have a few months to get back into some kind of healthy shape.

He browsed flight prices and lodging reviews in Reykjavik. I crocheted.

When the drip was done, I was unhooked from the chemo and sent on my way. We moseyed down to the pharmacy to get my meds, and then headed home.

I now get to observe how this new cocktail affects me.

I am curious to see what happens.

I told me so

Yesterday I got to work and after plowing through emails, and decided I probably should call the consulting nurse about Saturday night's symptoms.

I knew they'd tell me to go into Urgent Care. As I called, it was easy to predict the future.

I told the CN about my symptoms. She talked to an ER MD, and said "If this ever happens again, call 911. Now, get into Urgent Care."

As if I'd call 911. As if I could tolerate emergency vehicles pulling up to my house and causing distress to my neighbors. I'd consider it if they came in an unmarked minivan and quietly knocked at the door. Or if my husband drove me to the temporary fire station up on Greenwood.

So I asked a coworker to drive me to Capitol Hill. I called my husband and asked him to meet me there. My coworker and I got into a car with a dead battery. Another coworker was pulling out, and I caught a ride with him.

I checked in and as I gave my information, the receptionist called someone and said "chest pains". That ratcheted things up a bit. I thought about saying "But they're old chest pains!"

I was taken to an exam room, unceremoniously traded my shirt and bra for a gown, hooked up to an EKG machine, blood pressure cuff and finger thingy simultaneously by a number of RNs, who left when they were done with my body and as quickly as they'd arrived.

My husband showed up. My anxiety dropped and my depression blossomed. "This is exactly why I didn't want to make any noise about my symptoms", I told him as I lay there with those annoyingly stickly EKG post-its on my legs and chest.

Someone knocked at the door. "Who is it?", I asked. I was curious what the response would be. There was a pause. "Susie, the nurse." "Come in."

I figured if I had to be there, I could screen who got to come into my exam room, even if that meant anyone who knocked.

Another RN came in and asked my about my medications. She rattled them off. "Yes." "Yes." "Yes."

"All of them," I finally said. I realized I felt bad about all the meds I'm on right now, as if I'm a basket case.

I got comments on my henna tattoo. Susie asked "Is having henna tattoos common?" When I told her no, she then asked "Are you gonna keep that look?"

Now, that was an interesting question. I was surprised. As if I'd choose to be bald.

During the couple of hours we waited between consultation with the ER MD, an xray of my chest, a blood draw, I realized that part of the reason I'd not called when I first had the symptoms was I wanted some control over what's happening to me. That would also explain why I'd cancelled a number of elective appointments, such as with a Naturopath who was going to talk to me about meditation and the physical therapist who was going to learn I haven't been doing my exercises.

I'm sick of cancer treatment and its minions.

We left Urgent Care with the news that there was nothing wrong with me. I could have told them that. I told me so before I called.