I am changing my name to "Fuzzy"

Cleaning with cancer

We've been using April Lane's Home Cleaning for many years. They come by every week or two and make us happy.

I'm not usually home when the house is cleaned. One bad chemo day, I was home when the cleaner arrived. I didn't want to alarm her, so I made myself visible and told her why I was bald. She didn't say much other than "Okay", and that was the end of that.

Or was it?

She apparently went back to the office and told the operations manager, Samara, about my sitch-ee-ay-shun. Samara emailed me and told me about a program that April Lane's participates in called "Cleaning For A Reason". She asked if I wanted to have my house cleaned through this nonprofit.

Heck, yeah!

So for the past few months, we've been getting a little extra cleaning, which has been a treat. We have a lot of books, and they were embarrassingly dusty, so we had the extra visits concentrate on unembarassing them.

Last week, Samara contacted me again to ask if the Seattle Channel could interview me about our participation in Cleaning for a Reason.

Heck, yeah!

They all showed up this afternoon. Samara, Katie and April arrived from April Lane's, and Roxanne Vainuku and Vincent Pierce from the Seattle Channel.

First, they interviewed Samara about the program and April Lane's participation.

Then they interviewed Katie, an April Lane's cleaner. It was kind of amusing to see how the video producer carefully placed the cleaning supplies in front of Katie, so they'd be in the shot.

Roxanne and Vince were pros, and clearly didn't have a problem with moving around in our crowded little house. Vince knew exactly what shots he wanted, and Roxanne's questions showed that she had clearly done her research.

Vince got shots of Katie dusting, vacuuming and cleaning the sink.

Apparently the Mayor attended a conference about ironing.

They interviewed me, and then they were gone.

Phew!

I think I might be getting my body back

My calendar looks empty, without all the chemo appointments. I've got other medical appointments lined up, but not the weekly voluntary poisoning.

After two weeks without any chemo, some things remain the same. I still have no eyelashes. I'm not able to exercise. My eyebrows are hanging on by a... eyebrow. I occasionally get that gross sensation at the back of my throat, the poison telling me it's there. My hair is still maddeningly short.

Some things are different. I'm not exhausted. I'm willing to go out and meet friends. I have a little bit of fuzzy hair on my head. 

And, the port is out of my body and in a jar on the dining room table.

I took some photos the night before surgery, knowing it would be removed.

The little lump that was

Yesterday afternoon the spouse picked me up at work, and we headed to Capitol Hill. We went to the surgery center, checked in, and were invited into a surgery room.

The RN took my information. I asked if I could keep the port, once it was removed. She said probably not. She asked me to change into a "gown" and left.

The PA came in, made sure I understood what was going to be done, and invited me to lay down on the table. I asked if I could have the port, and she said "Sure." She said she'd put it in a bottle.

Once I was on my back, the PA told me to turn my head to the left, I assume so that I wouldn't look at what she was doing. I scratched my head and she advised me not to do that again. She told me I'd feel lots of tugging when the Lidocaine kicked in and she started wrassling with the port to get it out. She said that the port had been in long enough for tissue to adhere to it.

Great.

She did indeed wrassle and I did indeed feel lots of tugging. She had to give me more Lidocaine when I said "Owie!" My feet were dancing some odd jig.

Meanwhile, the spouse was behind the curtain, out of sight, and asking me "Is now when you want me to take photos?"

 

I could hear the scalpel cutting my flesh - an awful sound.

She finished, stitched me up, and handed me the port.

It reminds me of the various alien things that are inserted into heroes' bodies by villains in science fiction movies.

I had to promise not to ever remove it from its jar, as it's a bio-hazard. Yeah, sure.

*******

Yesterday I tried researching before and after photographs of chemo patients, specifically what their hair looked like before chemo and what it looked like when it started growing back. I was hoping to get some idea of what's happening (or not) with my hair.

I wasn't successful, but I did learn that perhaps the reason the fuzz on my head is so gray is because chemo kills the hair pigment that produces color.

*******

Slowly and in fits and starts, I'm getting my body back. The port is out and when the surgery wound is healed, all I'll have to show for the bit of Borg that was in me is a scar. I have a little more energy. There is hair, though it's growing at a snail's pace.

Some things remain affected by the chemo. My fingernails and toenails are streaked with black. My body is horribly out of shape. My feet hurt.

Some things are permanently changed. My left breast will always look different now. I have a long scar on it and under my arm. My left underarm is still numb; a result of the damage done to the nerves there when the surgeon scooped out tissue to hunt for cancerous lymph nodes. I'm told that this may not reverse.

My skin is very dry and my hands look about 70 years old. I never have been particularly concerned about moisturizing as a cosmetic, and as a result I suspect my hands' aging has been made permanent by the chemo.

*******

It's hard to not be affected by my physical appearance when one breast is now different.

Granted, the only people who will probably ever notice are my husband and I, and the many medical professionals who are now a part of my life.

When I'm naked and look in the mirror or look down, the change is impossible to ignore. The breast that had cancer is smaller. In a way, it looks younger. The nipple looks as if something inside my breast is tugging on it. There's a long scar on the side of my breast.

My attention has been on treatment and I predict that as treatment becomes a thing of the past, I'll care more about my appearance, including my breasts.

When I start looking normal again, the parts of me that are permanently abnormal will then capture my attention.

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.