The face (actually, the toes) of neuropathy

Chemotherapy-induced peripheral neuropathy (CIPN) is why my Oncologist stopped my chemo yesterday.

I've been having tingling in my fingertips and feet, and my toe and fingernails have been sensitive to touch. Also, the nails have become discolored.

It's been about 24 hours since I was told I'm done with chemo. I'm starting to get happy, but my body is unable to celebrate. Apparently it will be weeks before I start noticing having more energy.

Dag nab it.

I sit in my Lay-Z-Bum chair and look outside. I think "Hey! I'm off chemo! I want to get out there and putter in the yard!" 

I stand up. 

I feel the fatigue envelope me. 

I sit back down.

Stunned and surprised

I started having some new chemo side effects in the last few days. Plus, the cold from last week has been lingering. I emailed my health care provider yesterday and told her/him about the side effect symptoms, which included a rash on the backs of my hands and forearms, toenails and fingernails painful to the touch, and lower back pain spasms. I suspected the back pain was a result of all the coughing I've been doing.

She/he told me to give a urine sample this morning before getting chemo, to make sure the back pain wasn't an infection, and confirmed I didn't need to do a blood draw, since the leeches were applied last week.

So, this morning I gathered up my crocheting, audio book, and stuff for errands after treatment and headed up to Capitol Hill. I went to the lab, and the lab tech said my orders were for a urine sample and blood draw. Not having the energy to argue, I complied with both. Blood was taken and I was sent off to a restroom with a baggie, two vials, a sanitary wipe and a small paper cup.

I am always intrigued by the directions to pee in the paper cup, after swabbing down my groinicological area with the sanitary wipe. At the risk of TMI, urinating without pubic hair has been a unique challenge. It never crossed my mind that pubic hair actually provides a route for urine to follow, once it leaves my bladder and urethra. If you think about it, when you wash your hair and let the water run over your hair, the water follows the flow of the hair. It's the same with pubic hair.

And my experience has been that without pubic hair, urinating is sort of a pee-free-for-all. It's not very orderly.

So you can imagine the challenge I faced this morning when told to pee into the cup. Once I was done, I felt compelled to deface the instructions posted on the wall that provided directions on how to urinate into the cup. If the directions had been accurate, they would have directed me to pee all over the cup, including inside, and all over my hand, and hope I got enough in the cup to fill the two vials.

Being 51 years old, I cannot imagine that this kind of ordeal will get easier or tidier as I age.

I made my way to the Infusion Center, checked in, and was told what room I was going to receive my weekly poison in. On the way to the room, I stopped by the nurses' station to tell the charge nurse about the new side effects. She said the rash and nail sensitivity were both a side effect of Taxol, and they'd let my Oncologist know before giving me chemo.

So I made my way to my sunny room.

My nurse came in and took my blood pressure and temperature. She looked at my back to make sure the pain I was experiencing there wasn't the rash spreading. She looked at my hands and my arms, and I told her about the pain I felt when my fingernails or toenails were touched. She told me that my Oncologist may choose to give me a different chemo with milder side effects and that if they continued with the Taxol, the side effects would get worse.

I asked her why they didn't just use the alternative chemo from the beginning, and she said that it's not as effective at killing cancer as the Taxol.

So I sat on the bed and began to crochet. After a while, my nurse said she'd talked to my Oncologist and he wanted to see me before writing orders for the chemo. 

Being a worry wart, I worried that he would hold off on today's treatment and thus drag out the chemo treatment for a few weeks.

About an hour later he showed up, took a look at the rash and at my fingernails, and surprised the hell out of me by telling me I could stop the Taxol.

He said I'd had eight treatments, and there was no clinical proof that 12 treatments (the amount I was supposed to receive) was any more effective than eight.

That was it. He shook my hand, told me I'd start radiation therapy within four weeks, and would see him again before then.

As he left the room, I remembered my much-despised chest port and asked him if I could have it removed. He said he's write the orders and it would be done in the surgeon's office, not in surgery itself.

I was stunned and not at all prepared for his pronouncement about stopping the chemo. It had not crossed my mind that this was an option. I thought I was going to have to hunker down and put up with the side effects.

I started to follow my Oncologist to ask him another question when I ran into my nurse. She asked what he had said and when I told her, she looked as surprised as I felt. There wasn't anything for me to do except leave; there was no reason to hang around. With a few words spoken by my Oncologist, I was done with the Infusion Center. It was like magic, though not very enchanting.

I said goodbye to the nursing staff, thanked them for all their care, and left.

I had texted my husband throughout this. He was as surprised as I.

I headed out to finish my errands and go home.

Now that I've been home a few hours, it still doesn't seem real. I want to be excited and celebrate, but I don't have the energy. I tried working in the yard, but wasn't able to do much without needing to rest and catch my breath. I'd like to jump up and down, but I remain subdued by the chemo.

Fuzz vs. hair

I am so tired of being bald and so eager to see what little hair is growing in get longer.

When I'm not studying it in the mirror, I imagine my hair's growth being blatantly obvious. When I do look in the mirror, I'm surprised how little there is and how it hasn't grown as quickly as I would like.

This morning I asked my husband to tell me what color he thinks it is. He acknowledges that it's growing, but sidestepped the issue of color. "It's fuzz," he says.

I think it's mostly gray.

*******

I have a cold that has kept me from work all week. Having a cold while on chemo is different in a few respects. I've been coughing a lot and have developed a wheeze, which I've never had before. When I lay on my back, each intake of breath includes a noise a little like two trees in the forest rubbing against each other. Yesterday I couldn't get it to stop and it gave me the creeps.

Being hairless includes no nose hairs. While I won't go into details, I will say that having a runny nose is different without nose hairs.

What's fair about chemo?

What would be fair is not having a cold at the same time as being on chemo. It's not a pretty combo. 

I already look like a freak, but now I look like a freak who honks, wheezes, coughs and sputters.

More sloth than human

A few days after my annual mammogram on September 15, 2010, I received a phone call from my health care provider, asking me to come back in for a look-see.

I was staying at my Uncle's house on Dabob Bay, spending a lovely weekend alone, doing little besides picking huckleberries and having family come by to visit. 

Family visiting

My uncle built his beautiful house, and it includes a unique elevated walkway out to a picnic table high above the ground, in amongst the fir trees and magnolias.

I took a photo of myself to send to my husband. This is what I looked like the day I received the "it's probably nothing" phone call.

Now, about 31 weeks later, this is what I look like.

*******

Since I've been on chemo, I've had no problems with my arthritis. I asked my Oncologist about this, and he said that chemo does help arthritis during treatment, but it comes back with a vengeance once chemo's over.

Great.

I have become quite the sloth during treatment. 

This is the most out of shape I've been my entire adult life, and the most I've ever weighed.

I've signed up for a nine-week pilates/yoga class the last week of my chemo treatments. I'm thinking that if I ease into exercise, I won't be discouraged.

Prior to diagnosis, I was a bicycle commuter, riding my bike as often as possible to work and back to home. I'd meet up with one of my best friends who also works downtown, and pedal home with her. She and her husband live about a mile south of our house. It was quality time with her, and I've missed both the pedaling and her.

I'm relatively sure I wouldn't be able to jump back on my bicycle once chemo stops, and begin bicycle commuting again.

*******

On Monday I conducted inspections at all the light rail stations. I was looking for things that needed fixing. It took all day, and by the end of the day I was exhausted and my feet were hurting something fierce. Different medical professionals I've spoken with about my feet say different things; Yes, it is a side effect, or no, it's not a side effect.

I got home on Monday and was in bed at 7:30. Normally I read for a while before going to sleep, but that night I didn't have the strength to read.

I am curious to see how long it takes for my energy to come back. I can tell I'm not as resilient as when I was younger. I'm not as apt to force myself to do all it takes to get in shape.

I'm middle-aged.

Sigh.

*******

I've been thinking about modern medicine, which has twice now allowed me to live longer. The first time was when my appendix burst and it took so long to be properly diagnosed that my insides were gangrenous. The second time was this breast cancer.

There were other times I came close to death, but these were due to accidents or my own stupidity.

Natural selection would have ripped me out of the gene pool at 40, and if I somehow survived that massive infection, cancer would have taken my out in my 50s.

I find this sobering.

One of the strangest changes about this illness is that I don't fear death as much, and I'm no longer sure there's a God-like being out there.

I don't fear death as much because I've been sick enough that I now know how easy it would be to slip away and not even notice I'd died. I experienced this first with the appendicitis and its related peritonitis.

And the cancer treatment-related illness I've experienced has mainly been extreme fatigue and feeling sick. All I can do is lay on the couch or in bed and my symptoms make me so lethargic that I don't care about anything - even dying.

And the unsuredness about God? I need to think about that some more before I can articulate it.

*******

Tina Koyama sent me a comb, to ensure I'm prepared for my hair growing back. 

My hair has started to grow in, but it's taking its sweet time. There's more on the sides than there is on top. I can't yet tell what color it will be. Sometimes it look very light, sometimes I see lots of the brown I had back on September 15.

I am more tired of being bald than I can express.

*******

Today I had my eighth chemo treatment. Four more to go. Then I get three weeks off before I start radiation therapy.

I saw the Advanced Registered Nurse Practitioner, not my Oncologist. I showed her the odd red skin around my chest port. Since I have a cold, she listened to my lungs. I had the discharge paperwork from my Nursigator and asked her to explain some of the terms, such as Nottingham Grade II of III, grade: Intermediate, Hyperplasia in benign ducts, and Pathologic stage: pT1c, cN2a, pMX. Since my head's full of snot and Nyquil, I nodded my head and pretended to understand her responses.

Having a cold while on chemo and while having hot flashes is adding illness to insult. I can only assume that once again I've offended one or another of my household gods.

I wasn't scheduled to have a blood draw, but since I have a cold, they decided to bring in the leeches. This slowed everything down. Then the pharmacy threw a wrench in the works and it was an hour before the chemo arrived at my bedside.

My bed was next to an older woman's who was getting a blood transfusion. This is something they do when a patient's white blood cell count is extremely low. I asked where she was in her chemo treatment and she said they didn't yet know. Good god. That would be torture to me, not knowing when the end is.

*******

With some frequency, people tell me they're not regularly reading this blog. They state it as a confession or an apology.


Certainly the egoist in me cares how many people read the blog, but the cancer patient doesn't care. I am doing it for me. It keeps me sane. Plus, I want a record of the experience, because I know I won't remember everything. I can easily imagine not looking at this blog for a long time after treatment ends. I won't want to be reminded of my cancer.

My chair of refuge and the last henna tattoo

This is where I spend a lot of my time. It's my father's old Lazy Bum chair. His sister's wool blanket is tossed across the back. His mother's blanket is on the seat and the pillow she gave to me and borrowed back when she was dying of cancer is on the arm. The little stool her husband made is on the left and the table my brother made is on the right. My mother's mother's rug is on floor and her sister's lamp is behind my brother's table. There are many other items in this photo that were made or owned by my relatives, and all of them make me feel better as I spend so many hours in this chair.

Joline came over this morning to do the last henna tattoo. I told her my hair's starting to grow back, and I didn't want to shave my head as I had in the past for other tattoos. She was okay with this.

She had done some drawings and we looked at them before she started. She wanted to do a butterfly. One of the aspects of asking my friends to do tattoos that I've liked is seeing what designs they come up with.

She's the only artist to do two tattoos. She enjoyed herself so much the first time that she asked for a return engagement.

 

Carol Milne came by to watch and hold Joline's sketch book open for reference.

As Joline worked we chatted quite a bit about friends, odd artists, Northwest Designer Craftsmen, degrees of Jewishness, travel, dating, etc. It was  gentle, rolling conversation interspersed with laughter. Carol has a lovely and rollicking laugh.

Hair!!!

Joline asked if I wanted earrings. "Yup", I said.

I was sad to say goodbye to them. The last henna tattoo is a demarcation in my cancer treatment. I've greatly enjoyed these tattoos and have been touched that my artist friends would be willing to oblige my request to help me cope with being bald.

I am grateful.

Sidewalk temptations and toxic ceremonies

How do I define how tired I've been feeling?

Perhaps the best way is to say that when I came across this disgusting abandoned mattress yesterday morning a few blocks from my house, it looked kind of tempting.

There were times yesterday at work where I seriously considered laying my head down on my desk and resting for a while. When my coworkers ask my how I am, I say "Tired" and they nod knowingly. They're not surprised. I am. Being tired is the antithesis of my normal state.

The fatigue does indeed appear to be doing what I was told it would do - it's accumulating. I don't wake up in the morning having any more energy than I did the night before when I went to bed. I am tired all the time. Last night and this morning I was going to visit with friends, but had to cancel. All I want to do is sit in my Lay-Z-Bum chair and do things that require little effort.

*******

I had a room to myself this morning, when I got my 7th of 12 Taxol chemotherapy treatments. No little old lady roommate chasing my yarn balls and scaring the heck out of me.

 

The spouse and I got nifty new little Canon cameras, which take much better photos than the crappy camera on my beat-up cell phone.

I am so happy about the stubble. It makes me smile whenever I think about it. Its growth indicates this strange trip isn't eternal. My hair loss is not permanent. There's now a hint of normality in my life. Just a hint. Everything else is still whacko.

Granted, it'll be a long time before my hair's at a length I would call decent. But when I rub my hand over my head, it feels like my body's saying "Enough of this bullshit. Up next, those hag hairs on your chinny-chin-chin."

My nurse brought me my pre-chemo meds about a half hour after sticking the big-ass needle in my chest port and robbing me of some blood. She left and I was a bored, so I decided to pretend the empty med cup was a monocle.

I think I look a little like Colonel Clink.

My nurse eventually hooked me up to the chemo, and I sat and listened to Ray Bradbury stories while I started a new afghan for my husband.

After a while, I had to go to the bathroom. I got our of the bed, moved the IV stand as close as it would get to the bathroom and not be unplugged, undid all the ways my IV was attached to me (other than the needle), and barely reached into the bathroom. I was able to sit on the edge of the toilet with just enough of my butt hanging over the bowl. I couldn't shut the door because it would cut off the IV's flow and the alarms would start ringing.

Later, when my nurse was unhooking me from everything, I told her about this adventure. "You didn't unplug it?" she asked. Apparently the IV machine has batteries for just such an occasion.

Now I know.

*******

One of the side effects of Taxol is neuropathy. When I go in for treatment or an exam, I'm always asked if I have any signs of it. My fingers and toes do on occasion tingle. Last night my "jimmy leg" was very bad. My nurse told me that this is part of the neuropathy.

I take L-Glutamine three times a day. According to the Naturopath, my Oncologist and the RNs, it's supposed to help. Since I've been taking the Glutamine from the first day of Taxol, I have to way of knowing if it's helping. I'm not going to stop taking it, to experiment.

*******

I asked my RN if the chest port will be removed between my last chemo and my first radiation therapy. She said it's up to me. She told me that some people keep it in during radiation therapy because they don't like traditional blood draws out of their arm veins.

I am always interested in hearing what other patients do or how they respond to similar experiences. Today when I was leaving the Infusion Center, there was a bald woman in the waiting area, not doing anything to cover her head. I liked that.

Perhaps now that my hair's growing back, I'll be more comfortable being bald out in public. I resent looking like a freak, but now that the end is in sight, I'm more inclined to be okay with my freakdom.

If I had the energy, I'd do a little dance. 

I will have this piece of equipment removed from under my skin the first moment I can.

*******

I've been thinking about ceremonies and parties.

I'd like to do something for the artists who did henna tattoos on my bald head.

I'd like to celebrate getting the chest port out.

I'd like to do something special when chemo's over.

I'd like to do something to mark the end of the poison, when radiation therapy's over.

I'd like to do something special when my hair's an inch long.

I'd wonder what a kind of party to have when my groinicological hair returns. Probably a private party.

And how shall I mark my first bicycle ride, which will no doubt be pitiful? A pity party.

*******

It's odd to be optimistic.

Stubble and fatigue

 

stubble

c.1300, "stumps of grain stalks left in the ground after reaping," from O.Fr. estuble "stubble" (Fr. éteule), from L. stupla, reduced form of stipula "stalk, straw"

It's there, I swear it

This morning my coworker was on the bus when I got on. I sat next to him and we chatted. I was so tired, I wanted to lay my head on his shoulder.

That's not at all like me.

Normally, I can't sit still. Now it's all I want to do.

The fatigue is not sleepiness. It's a bone-deep lack of energy. It's an involuntary sensation of being completely subdued. It's a contentment with doing nothing that requires pep.

pep

"vigor, energy," 1912, shortened form of pepper, which was used in the figurative sense of "spirit, energy"

Today's henna tattoo by Jennifer Dice

Like the others, she was a little nervous at first.

Then as she worked, I started hearing her say things like "I guess it's going okay..." and "I'm liking this!"

I think it's great.

Yesterday's chemo is this morning's sleeplessness

I work up at 3 this morning, I assume because I forgot to take my post-steroid sleeping pill last night. I decided to get up when I awoke, thinking "I can get a lot done!"

That's just the steroids talking.

I had my sixth of 12 chemos yesterday. When I arrived after my brief visit with the Advanced Registered Nurse Practitioner (my Oncologist wasn't in), I headed over to the Infusion Center and checked in. The reception staff told me I was in a two-bed room, by the door.

I strolled down the hall, satchel and crochet bag in hand, looking forward to working on my cancer comforter and finishing listening to Midnight in the Garden of Good and Evil. When I got to my room, there was a bag of lung cancer chemo on my table and an elderly woman hooked up to poison in the bed by the window. She was napping.

I got set up, adjusted the bed, and looked at my neighbor for signs of wakefulness. Her television was on and she was not watching House.

The Charge Nurse came in and got the IV going in my port. It's always a little scary to see that big-ass needle coming toward me and the *pop* sound when it punctures my skin.

She turned the volume down on my neighbor's television, thank goodness. One of my pet peeves is being held hostage to the noise of my chemo mates' television sounds.

While she was arranging the tubes and checking my blood pressure, I told my RN that I used to work in a psychiatric hospital. She told me about working at Western State Hospital (sign of the times that a state-run psychiatric hospital is reviewed on yelp) during her RN training. While there, she worked with WWII vets that relived the war every day in that dreadful place, and she felt useless. She said she struggled with coming up with something to write in her reports at the end of the day. She paused in her talk with me to wordlessly recall what it was like, and then said that she could have written about her ineffectiveness, and wondered out loud if that would have been helpful.

She left. My neighbor woke up when her cell phone rang. She thrashed around a bit, never did get to her phone but managed to start her drip machine beeping. Her IV was hooked up to her arm, not a port, and many times while I was there she did something to start the beeping.

She began talking to me, and I learned that she was 80, that she'd been diagnosed with lung cancer a few years ago, had a portion of a lung removed and was okay until they found cancer in the other lung. Her husband died one month ago, and she had been his primary caregiver. She was glad he "went first" because she believed she could give him better care than anyone else while he was declining due to "the Alzheimers". He never understood that she had cancer, and if she told him about it, he forgot right away.

As she moved around, her machine would beep a bit and then stop when she repositioned her arm.

She told me each of the key points in her life more than once, so I didn't listen much to my audio book at first. We talked about crocheting, and then the ball of yarn rolled off my bed and under hers. We were both hooked up to our IVs and I would have been fine with leaving the yarn on the floor, knowing that I'd be able to use it still and retrieve it when I was unhooked.

She horrified me by leaning all the way out of her bed to reach under it and retrieve the ball of yarn. I told her it was unnecessary, but there was no stopping her. She was a tiny thing, and I wondered what I would say to the nursing staff when they came in and saw her in a heap on the floor, upside down, her IV beeping like mad, having reached for an errant ball of black wool yarn. I assumed "I asked her not to!" wouldn't do much to excuse my not stopping her. 

She managed to get the yarn and throw it to me and said "I can still throw!" I was impressed.

She told me about her family, her three sons and her 18 grandchildren. She spoke fondly of a granddaughter that was the only one she'd let go wig-shopping with her. Like, me, she only wears her wig for special occasions. Unlike me, she's worn hers. My occasions haven't been special enough yet.

One of her sons showed up, and she introduced us. Once she was settled in again, he turned on Fox News. I understand that this station is popular, but I have to confess I've never actually seen anyone watching it. This is one of my flaws - not letting it really sink in that so many of my fellow Americans actually watch it, though statistically I know it to be fact. At least I didn't literally allow my jaw to drop, though it did figuratively.

I showed them my politics by plugging in my audio book and resuming crocheting. The book ended, Fox News did not, so I started listening to some Ray Bradbury.

My chemo finished and my machine started beeping. I saw some scrambling out of the corner of my eye and told my neighbors that this time it was me.

My nurse unhooked me and I went on my merry way after packing up my scattered belongings and wishing my neighbors good health. I was tired. I wasn't as relaxed as I have been the times when I'm able to be absorbed by a book and have some success with whatever I'm crocheting.

I drove home and crawled into my husband's lap, which is my cancer treatment safe harbor.

*******

Prior to chemo, I visited the newest member of the family, my great-nephew. I was able to spend a few hours with he and his mother, despite his clearly being alarmed at my being bald.

*******

Today my friend and coworker Jennifer's coming by to tattoo my head. I'm considering having this be the last one. When I first asked my artist friends to do these henna tattoos, I bought three kits from a shop in Ballard. When I was rung up at the cash register I almost gasped at the cost, but proceeded without saying anything. This is another flaw of mine, not wanting to offend a cashier. I blame my parents for their pounding into me extreme politeness, which those who know me will be surprised to hear. I blame myself for not getting this lesson straight. Part of the flaw is that I'm extremely polite at the wrong times.

So I'm almost out of henna, though I have enough for today.

Last week Jennifer showed me her sketchbook, and what she's thinking of drawing on my head. I admire people who can sketch. As anyone knows who's seen my art, I haven't moved much beyond stick figures.

*******

Since I woke so early this morning, I decided to try out my cheap fake eyelashes and wig, whose fakeness goes without stating.

 

I ended up looking like Doris Day, which doesn't appeal to me at all.
 

Her movies with Rock Hudson creeped me out when I was little.

So I decided to try them as eyebrows.

 

Not so good, either, so I tried them as bangs.  

Moving on quickly, I tried them as hair.

"A" for effort!

Treatment's turning me into someone else

I'm turning into someone else.

I look in the mirror and don't know who that person is who looks back at me.

Who the hell is it? Some escapee from a freak show.

See the bald woman!

See your reflection on her shiny head!

Watch her eyelashes fall to the ground!

See her struggle to fit into her jeans!

Watch her change colors as she has repeated chemo-induced hot flashes!

Observe the "I'm not looking at her" glances from strangers as they try not to look like they're looking at her!

Over the past week, it's been harder and harder to find eyelashes to smear mascara on. Seriously, yesterday I had one eyelash left on my left eyelid. I've given up.

My eyebrows are getting pretty thin, too. Yesterday I tried applying color to my eyebrows, and as usual, my makeup skills haven't changed since I was 13.

A coworker has talked me into going to Nordstrom's next week to try high quality false eyelashes. Apparently there are kits that include individual eyelashes, so a bald person can spackle in the bare patches. Who knew? Maybe I'll put some on the very top of my head and see if anyone notices.

*******

I was at a crowded public meeting Wednesday night, for work. I found myself staring at the bald men, looking for some sense of solidarity.

There was none.

While looking at these men and feeling absolutely nothing in common with them, I decided that when my hair starts to grow back, I'm going to see how long I can go without combing, brushing or cutting it. I'm going to let it do its own thing. It deserves it, after what it's been through.

So do I.

I keep looking for the fun in all this, and it's getting harder and harder.

*******

Last week, again for work, I spent time in a recording studio (I'm the voice talent on some ticket machines). The recording engineer was clearly surprised when I walked in bald, and when we were sitting chatting, he asked what was going on with me.

I told him, and he proceeded to tell me about a friend of his whose cancer has metastisized. "Poor thing..." he said about his friend.

The moment those words about his friend started coming out of his mouth, I had a revelation.

It is this: My despair about my situation is very close to the surface, but I haven't known it. I've been so busy being freaked out and blown away and hunkered down and holding on for dear life that I had no idea what was just below the surface of my coping mechanisms.

I also realized that this is a good thing, and that jerks like this engineer have no place in my life right now.

If there's one thing I've learned during this crappity cancer crap, it's that if someone tells me some bad thing that's going on in their life, I will not tell them about anything similar that's happened to me or anyone I know or anyone I've heard about.

*******

I've been slightly untethered by my medical team. Since I appear to be tolerating the Taxol, I now only see the Oncologist every three weeks and get a blood draw to check my levels every other week.

Plus, the Nursigator program is over. No more weekly phone check-ins with her.

I guess I've shown enough stability that I don't need as much monitoring.

Dammit.

*******

Chemo this afternoon. 

Ring around the rosy
A pocket full of posies
Ashes, ashes
We all fall down