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.

A heart full of apathy and a head full of peacock feathers

Last night I woke up in the middle of the night with "chest pains", which I haven't had before.

They weren't intense. They came and went over and over, and lasted about an hour.

I lay there wondering what it meant.

Was I having a heart attack?

Was my heart laboring?

What should I do?

I tried laying in different positions, to see if that made a difference.

I thought about waking my husband, but knew he'd want me to call the consulting nurse, and that would inevitably lead to a trip to the hospital.

I did not want to go to hospital.

As I monitored myself, I thought about my mother. She died a little over a year ago.

She slipped away quietly when we were all out of the room, after days of my siblings and I caring for her.

Was I slipping away?

I thought about our next door neighbor Tommy, who died in March from a heart attack as he lay in his bed.

I listened to my heart beating. It was a little fast and not erratic.

I thought about my Oncologist telling me that one of the side effects of chemotherapy is possible heart damage.

I was apathetic about any outcomes, and sick of medical professionals.

I did nothing.

*******

I woke up in the morning, alive.

Today was henna tattoo day, with my friend Joline El-Hai signed up to do the honors.

She showed up with her sketch book drawings of peacock tail feathers. She told me they were symbolic to ancient Greeks (knowledge and wisdom), Hindus (kindness, patience and good fortune) and Buddhists (thriving in the face of suffering).

Sounded good to me.

She was nervous, but soon after starting, I heard her say a number of times "This is fun."

Last week's tattoo is almost faded, and makes a nice pattern in the background.

Carol Milne stopped by. She's signed up to do a tattoo in a few weeks.

Once she got going, Joline was sure of herself. There was very little hesitation and she continued to say that she was enjoying herself.

That's nice, because it was hard for me to ask my friends to do this.

For next week, Tina Koyama's thinking about tattooing something pertaining to the Year of the Rabbit.

Crash carts, broken blood vessels and Nordstroms

Yesterday I had to give myself the last shot of Filgrastim (classified as a "colony stimulating factor" - what the heck's that mean?). That injection was a milestone.

I had my final AC treatment last week, and other than taking some antibiotics this weekend, it feels like I've rounded a corner. Supposedly, the worst part of treatment is over, though I still have months to go.

In looking over the side effects of AC infusion, I don't see anything about Merda Sententia, the general crappy sensations I've had each a week after treatment. It's not just fatigue or malaise. It feels like my normal body fluids have been replaced by chemicals, and subsequently my body feels unnatural, and I don't want to be stuck in it.

Next week I start Taxol, which I'll get weekly for twelve weeks. The first time I am unenthusiastically infused with this sludge, they'll be prepared for my having severe side effects by having a crash cart and Respiratory Therapist on hand. 

That brings me great comfort.

My latest tattoo has gotten me a lot of compliments. Marvin Johnson (aka Jerry the Bee Guy) did a wonderful honeycomb with bees, and a mandala at the back of my head in case any evil approaches me from behind.

A few days ago, one of my coworkers walked up cautiously to look at it. Her first thought was that I had a bunch of broken blood vessels on top of my head.

I'm more and more comfortable being out and about without any head covering. I staffed a public meeting last night in Puyallup and thought wottheheck, I'm going to be a la natural. No one screamed or stared or ran from the room with their hand over their mouth.

I rarely stray outside my comfort level.

It's the introvert in me.

*******

My skin has been very dry. I'm getting dark circles under my eyes, and the skin there's getting wrinkly. Last week I braved Nordstroms (I never feel white enough, feminine enough or clean enough to be in there) and headed for the cosmetics section. A nice woman in a lab coat gave me a sample of some cream to put under my eyes. She handed me her card and when I asked her how much the little jar of age-defying goo was, she said "Sixty-five dollars."

Yikes.

Witness me shooting myself up

(c) 2007 Helen Vogel

My cousin Helen has suggested that I consider the term "witness", as opposed to "survivor".

I like this and I think I'll use it. It speaks more to who I am. I am a witness to having cancer (kind of, because I couldn't really tell I had cancer), and I am also witness to the current trends in diagnosis and treatment (oh my word, yes!).

I'm starting to notice a trend in how I feel the side effects of chemo, in the days after I'm unenthusiastically infused.

My chest feels weird. My heart feels like it's beating really hard. I'm thirsty.

Last time, I felt awful for a few days. I'm waiting to see what happens now.

I have to take quite a few medications at home during the weak following treatment. Since Friday was my last dose of AC, many meds I've taken between AC treatments I won't have to take any more.

Such as injecting myself with Filgrastim for five days in a row, starting three days after chemo.

Such a benign-looking little vial.

Having never had the opportunity before to inject myself with anything, I've found that doing so turns my stomach a little. The vial is vile.

 

Here's my little kit. It's a vial of Figrastim, a syringe with a big needle, a smaller needle and a rubbing alcohol swab.

 

They give me a big syringe so I can draw the medicine out of the vial. The smaller needle might break when I poke it into the rubbery top if the vial.

 

I stick the big needle syringe into the vial and pull back on the syringe to draw the Figrastim out.

 

I then swap out the big needle for the little one, and plunge the needle up so there's no air in the syringe.

 

I use the alcohol swab to clean a little chunk of my lower belly, and inject myself. The needle's so small that I can't feel it.

Note that since I haven't been bicycle commuting to work since September, and actually haven't been getting any exercise, I now most definitely have some lower belly chunk.

When I'm done, I throw the needles in the hazardous waste tub on the back of the toilet.

My understanding of what this particular medicine does is it causes white blood cells to reproduce faster than usual, and aids in keeping my white blood cell count at an acceptable level. My Oncologist has me on a more aggressive dose of AC (every other week instead of every three weeks) because the cancer had paved a road from my breast to lymph nodes under my arm.

These next few days are the last time I'll have to do these injections. 

*******

This morning, the spouse basted my head with olive oil and scraped the henna off. It looks great.

One nasty cocktail down, and a honeycombed head

I had my final AC treatment yesterday.

It's a long walk down an eerie tunnel from the parking garage to the elevators that take me to Oncology and Infusion.

While I was waiting to check in to see my Oncologist, there was a couple ahead of me at the counter. I threw my bags down on a chair and waited behind them to check in. When they were done, they sat next to my bags.

After coughing up my co-pay (which OMG doubled form $5 per visit to $10), I picked up my bags from the chair and sat next to the couple. They looked about ten years younger than me. The man asked if I minded telling them where I was in treatment. I told them. The woman had surgery last month, had a chest port, and was there at that time to get the pathology report from her surgery.

Boy, did that sound familiar.

I told them what it's like for me, and said that it's different for everyone.

An elderly gentleman was sitting across from us, listening and chiming in occasionally. When the couple left, he came and sat next to me, after asking if that was okay.

We chatted for a bit. He used a phrase that I liked. When I asked him if he was tired from his radiation therapy, because I've heard that's a side effect, he said "It sapped my native power."

I didn't feel like swapping many cancer stories, so I asked him where he was from.

"Originally?", he asked.

Yep, I said.

"You ever heard of Montana?"

Yep, I said.

"Well, I'm not from there."

About the time I was done LMAO, the nurse came for him.

When it was my turn to see the very busy Oncologist, he said my white and red blood cell counts looked good. While he's not particularly demonstrative, I think he's happy with how I'm tolerating the medications.

After our chat, I headed over to the Infusion Center. About an hour earlier, while parked on the street, I discreetly unbuttoned the first two buttons at the top of my shirt, dabbed some Lidocaine cream on the chest port, and covered it with a plastic bandage. This numbs the skin stretched over the port.

Nasty port needle

Nurse Vicki took off the plastic bandage, held up the nasty needle contraption for the port, counted to three and when I inhaled, she punched my skin with it.

The Lidocaine worked and I didn't feel the punch. I should have, because the needle is very thick.

I then had to wait about a half-hour for the poison to come up from the pharmacy. 

I got the two doses of chemotherapy and left.

I had about a half-hour wait in the pharmacy to get all the meds I need to take to counteract the side effects of the chemo.

There's almost as wide a range of humanity at the pharmacy as there is on the #7 bus.

******* 

Today, Saturday, Marvin arrived at 10 a.m. to do the next henna tattoo. He's the token male in the line-up of artists that have kindly agreed to dabble on my hairless pate. 

He recently bought a company called "Jerry the Bee Guy" and when he was in our kitchen, he looked up and said "You have dead wasps in your ceiling light."

He could tell by their silhouette that they were wasps.

Marvin showed me some designs he was considering. We both liked the hexagon shapes he'd sketched. They looked similar to the shape of a honeycomb.

I asked him how bees make that shape, and he told me that bees (wax) and wasps (paper) make their nest cells in a round shape and their body heat reshapes the cells into hexagons.

He incorporated some bee-like critters into his henna project.

I had mixed the henna at 8 this morning, and this time diligently followed the directions.

 

I plan on keeping the crusty henna on my head as long as possible, to give it every chance I can to take well this time.

 

It took Marvin about two hours to complete what he wanted to do.

 

 

He was obviously nervous at first and said a couple of times "I haven't worked on a shape like this before."

Well, at least it's nicely-shaped, as so many people have been telling me since I've gone bald.

It reminded me of when I'm starting a piece of art. Sometimes at first, I don't think it's going to work out. Then, as it progresses, I realize that I know what I'm doing, and if I'm patient, I'll be happy with the end result.

I think that's what happened for Marvin today. He's a very good illustrator, and even though the shape of my head was not a surface he was used to, his skills were such that it worked out. When he was done, he was very happy with it.

Joline El-Hai came by and watched. She'll be doing a henna tattoo next weekend.

Acronym City and rain on my bald head

Me and Coworker Connie

Last week I had lunch with some friends from work. We caught a bus (where this did not happen) to the Loving Hut and once on the bus, I put on my uniform. My glasses immediately fogged up. Two of my friends had their toddlers with them, and my appearance didn't throw them into paroxysms of terror.

Dang.

*******

Now we're going to take a little trip through Acronym CIty.

I have my fourth and final treatment of AC today. This causes both relief and anxiety. My first two treatments had very few side effects. The third one two weeks ago kicked my ass. So while this is my final AC cocktail, I'm nervous about how my body will respond.

Last weekend I had what was probably an ocular migraine. I was looking at my laptop and suddenly was unable to see all of the screen. At the same time, I saw a bright squiggly line in the corner of my eye and I had a dull pain across above my eyebrows.

WTF?

Normally I would have ignored these odd little effects, but since I'm taking chemotherapy I called the consulting RN. As I was talking to her, my symptoms disappeared. The consulting nurse consulted with an ER MD, and told me that if these symptoms did not appear again, to talk to my GP. If they did appear again, I was to get into the ER PDQ, if not ASAP.

That night in the middle of the night I woke up to a spontaneous nosebleed.

Great. Now I have a brain tumor. That's all I need. I'm SOL.

I talked to my GP yesterday. She wants me to have an MRI of my head.

Probable MR results

About three weeks from now I'll start a new chemo cocktail. Once a week for ten weeks, if my body tolerates it, I'll be the lucky recipient of infusions (like infusing olive oil with rosemary?) of Taxol. "Because it is quite thick and sticky, it requires a pump to properly administer the infusion", one Web site says and as not shown here.

The side effects are supposed to be less than AC, but we'll C.

We're now leaving Acronym City.

*******

I've been thinking about the term "battle", which comes up a lot like the term "survivor" in conversations about cancer.

I don't believe I'm battling cancer. I'm not battling anything that I'm conscious of. What I am doing, I believe, is looking for humor while voluntarily poisoning my body in response to having cancer and its bizarre side effects.

I also don't think I'm a survivor. 

Who knows? There may still be a couple of cancer cells floating around in my body. There probably are. There could be some left after the poisoning's done. If so, I don't qualify as a survivor. And if so, they could result in nothing, or my death, or more treatment. 

What's being a survivor mean? Does it mean I survived treatment? I don't think I'll ever "survive" treatment. I'll continue to be affected by it (memories and physical scars) for the rest of my life.

My Papa and me and my concept-free brain

When I was a child and first heard the term "remission", I didn't understand what it meant. In my child-like and concept-free brain, I figured you either had cancer or you didn't. It wasn't until I was an adult that I understood that remission meant a person was symptom-free, but the cancer could re-blossom at any time.

Interestingly, "remission" is not a word I've heard spoken out loud during my diagnosis and treatment. Perhaps the word has fallen out of favor in the world of those who are "battling" cancer as either its "survivors" or treaters.

*******

Yesterday I went outside hatless in the rain. 

A new sensation! 

I liked it. 

It was the physical equivalent of one of my favorite sounds - rain falling on the roof of our VW camper.

Polite mayhem and bad girl sex

I drove to Northgate to catch a 41 into downtown. I had to have a blood draw after work, and the lab's very close to Northgate.

Others were clustered at the bus bay where the 41 picks up riders. When the bus pulled up, we all just kind of balled up by the front door. There was no order, but it was also quiet and decent. Polite mayhem bus-loading.

By the time I got on, it was SRO. I hung onto two poles running horizontally above me. I felt like I was back on the elementary school playground and considered swinging to the next bar.

I had masked up, the bus was crowded and I was dressed for the cold, so I was way too hot. I had the micro-climate thing going on inside my mask. A mini-global warming experiment. I was expelling too much CO2, and if there had been any polar bears in my mask, they'd be dying.

As I hung there with my ankles securing my bag of lunches for the week, baking in my safe-from-germs gear, I wondered what it will be like this spring when the weather turns warmer. I won't want to wear a hat. Will I be brave enough to be bald on the bus?

As my mother used to say, "We'll see."

I looked down the aisle and noticed a woman reading a magazine. All I could see on the cover was "BAD GIRL SEX" and that the magazine was Cosmopolitan.

Shit, if some woman can read such trash on the bus and not be embarrassed, surely I can go bald when the weather warms.

I truly can't imagine doing what she did.

I also can't imagine having my bald head not covered while riding the bus.

But it'd be easier than being caught reading in such a public setting the a magazine that says on its cover "75 very naughty moves to try on a man."

Cancer = bad taste

I have neglected to mention chemo and taste.

It goes without saying that chemo is in bad taste.

To add insult to chemo, since it kills the fast-growing cells that line the inside of my mouth, my taste buds are altered.

This occurs usually about a week after treatment.

It first happened with Satsuma oranges. They tasted metallic.

Then last week I made a batch of sauteed potatoes w/onions. The first bite, I could have sworn there was something in them that was rancid. I had to throw it all out, after doing "ptui - ptui - ptui" into the kitchen sink.

The Food Gods

On Friday I had dinner with two friends at a Thai restaurant in lovely Lynnwood. We ordered spring rolls as an appetizer. One bite and I prayed to the Food Gods that my Phad Thai was not going to have the same effect. The spring rolls were nasty.
The confusing thing was, it actually tasted like something had turned. My friends said they tasted fine.

So now, I cautiously approach food that's not bland.

I'm integrated with Zippy the Pinhead

I saw a Naturopath yesterday. First time I've done that.

If I recall correctly, this particular physician was referred to me by the Nursigator. She's running a research project in conjunction with "Futch" (as my former neighbor calls it) to compare cancer lottery winners. Specifically, they're anonymously matching and tracking paired individuals, with one seeking traditional medicinal/pharmacological treatment and one seeking the same treatment integrated with naturopathy. They will follow the pairs over the years, to observe how their lives progress or decline.

The exam table lurked in the background

I didn't really care about the research, so much as consulting with this particular Naturopath about diet during chemotherapy and radiation therapy. But in order to be seen by her, I was asked to enroll in the study.

Erroneously, I assumed that since I am taking chemotherapy and radiation therapy, I'd be the person seeking traditional treatment.

It ends up I'm "integrated" by virtue of seeing this physician for treatment. Makes me feel so liberal.

We talked for about an hour, and it definitely was a conversation; no pontification on either side. Her main focus, she said, will be keeping me cancer-free after treatment.

I felt better after seeing her, because we talked about options during and after chemo/radiation therapy that don't involve putting poisons in my body.

When I got home, I emailed my oncologist all the Naturopath's recommendations so we can talk about them on Friday when I get my final infusion of this round of chemo.

*******

Here's a Haiku about some of the latest chemo side effects:

Graying lunulae.

Dyschromia produces

Partial eclipses.

*******

At the risk of appearing self-centered, here are some photos of me.

There are some things I don't have to do now, that I would normally do if I was not bald:

 Such as brushing my hair,

 Curling my hair,

 Drying my hair,

 Hair-spraying my hair,

 Combing my hair,

 Putting gel in my hair,

Or wearing a shower cap.

And, there some of my hats look better than others when I'm bald.

  This was my father's hunting hat.

 

I made this one. Typical chemo cap. Good for use in public, 'though everyone can see I don't have hair. We all play along, pretending we don't know I'm bald.

A couple of my hats, when worn while bald, cause me to remind myself of Zippy the Pinhead.

 See what I mean?

This was my grandmother's.

This was my Uncle Cliff's.

 I don't know where I got this one, but I've had it for years and it's never fit. I was hoping that it would now. It doesn't.

This was my brother Marty's from his Air Force days in West Germany.