Janet's Blog

I have noticed a strange phenomenon of late. I'm not sure it's more than my imagination, but I seem to have five o'clock shadow on my head.

I have not gone all cue-ball from any of my treatments and have in fact been periodically shaving my head. I have not had enough hair since February to look like anything other than an unfortunate nuclear reactor meltdown victim (or perhaps a moldy cantaloupe) and removing the fuzz has been the best way to deal with it. This time it seems different, though. I think there's more hair since switching chemotherapies. Maybe my follicles have as much vim and vigor as I do (I have so much decadron-induced vim that I'm posting to my blog in the stupid wee hours of the morning). The shadow on my head is very fine and soft, and there may not be an actual full head's worth of hair, but maybe I'll get enough to do a comb-over.

This evening Brian checked my nostrils with a penlight (I was complaining about my lack of nose hair as I reached for some yarn in a bag on the floor--my nose totally dripped on my hand) and commented that there seem to be some short ones in there. Maybe they're new, too. What I thought was my last strand of eyebrow gave up the ghost two weeks ago, but the other day I realized there are about eight more little hairs to take its place.

My wigs are very pretty and mostly convincing (the only one I'm skeptical of is the blonde one, but people who don't know me well are always raving about my "highlights" and don't notice anything amiss), but it does get tiresome to wear them. The convenience does not entirely negate the itchiness, heat, and worry that a vigorous sneeze could dislodge something at the most inopportune moment. Mousy fuzz of indeterminate color would be a welcome change.

Labels: baldness, Brian, chemo, Decadron, eyebrows, hair, wigs

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If it's not bad enough to be bloated and mostly bald, with eyebrows that are jumping ship even as I type, now I am dealing with an issue I really haven't had to consider for a while.

I laugh when I see those moisturizer commercials which promise you can have skin that looks "ten years younger." I currently have the skin of a fifteen-year old. I have acne all over my face, head, and neck. It's around my ears, blanketing my forehead, dripping down my cheeks. The bumps are mostly small, at least, but there are more of them than I remember ever seeing before. I never had acne like this even when I WAS fifteen, and I by no means had clear skin.

In fact, I had acne well into my twenties but it had finally gone away. I was happy to have clear skin; I felt I deserved it after years of misery and over-the-counter treatments.

Dr. Hayes seems to think it is a reaction to the Avastin. I dunno. It started after resuming Abraxane; I don't know why adding back Abraxane would make the Avastin suddenly produce this effect. My head itches constantly, and most of the bumps are mildly painful. Acne products do no good, they just make my skin more red and peely. I have given up wearing my red wig because placing red hair on top of a red face looks awful. I have (mostly) given up wearing my brown wig because wearing stuff on my head is itchy and uncomfortable. I'm wearing hats to work, but they are hot, itchy, and uncomfortable. I don't leave the house on weekends because it's too much effort to try to cover the blotches, paint eyebrows, ring my eyes with liner so that I look like I have actual eyeballs and not currants sunk into my red, lumpy head.

I wanted to call in "ugly" to work today.

Next Tuesday I will be seeing a dermatologist for the first time, who will probably go, "hmmmm. You have a rash." I wonder if he or she will have the miracle cure.

Labels: Abraxane, acne, Avastin, baldness, Dr. Hayes, eyebrows, hair

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I saw an ad for Pink Ribbon Barbie for the first time at the University of Michigan Cancer Center at my infusion appointment.

I was resuming chemotherapy after a two month break, and decided to read a women's magazine promising me fashion advice and information on how to have the best butt ever. It was an older magazine from October, and had a feature on breast cancer prevention (I'd like to point out to people writing breast cancer awareness month articles that whereas regular self-exams and mammograms are key in early detection, they don't do SQUAT to prevent breast cancer...nobody knows how to prevent it, so call your article something else).

In flipping through the magazine, I turned the page and beheld Barbie's smiling face. Her impossible figure is bedecked in a dazzling gown; her hair is flawless. Sales of Pink Ribbon Barbie promise to help support the Komen Foundation.

That's great, and I certainly don't object to Pink Ribbon merchandise, but Barbie as an embassador for breast cancer is a little bit ridiculous. I sat in my infusion chair, bloated, eyebrowless, expecting that my nasty, scraggly hair would begin again to fall out, and praying that chemo wouldn't give me awful fatigue and nausea.

As an alternative to Mattel's Pink Ribbon Barbie (which was perhaps well-meant but not exactly on the mark), you might consider Breast Cancer Barbie.

"While Pink Ribbon™ Barbie® is dressed up for a charity ball in a gorgeous gown and has her flowing blonde hair up in a bouffant hair-do, Real Breast Cancer Barbie is spending the evening alone with her bald head in the toilet."

Breast Cancer Barbie more accurately reflects the experience of breast cancer. She has lost her hair, gained weight from the steroids given to prevent nausea, and has an IV for her regular infusions. She needs a pill case because the chemotherapy makes it difficult for her to remember if she's taken her medications or not.

Bidding is open now! This item is one-of-a-kind. Proceeds will help send the creator of Breast Cancer Barbie, Linnea Johnston, to the 7th Annual Conference for Young Women Affected by Breast Cancer, which is certainly a worthy cause.

Labels: baldness, chemo, eyebrows, infusion, nausea, pink ribbon

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Brian got worried while processing nursing and oncology journals at work, and contacted Lita, who left a message for me to call her back.

My blood tests may warrant new scans after all.

I am seriously considering begging for some alternative to the CT scan, which involves drinking copious amounts of barium, a substance which is also famous for being used to give people enemas. It's nasty. The last time I got so icked out over the prospect of drinking it that I yakked into the waste basket in the doctor's office waiting area. I love it not.

Brian seemed to think Lita will want me to have scans before my next appointment in two weeks. On the one hand, I think one might as well be prompt about treating problems. On the other hand, I wish I didn't know about any of this and could spend the next two weeks feeling brazenly optimistic before the deflating: your break may be over.

I don't even know what she's going to say, but I imagine my tumor markers are creeping up and the wonky liver results are "of concern." Then the scans will show increased tumor activity and there will be some head-scratching over whether or not this is resumed activity or whether things had started to progress while I was still taking Abraxane.

I would imagine the next step is to try Abraxane again to see if it continues to beat back the invasion. If not, we switch to another therapy and hope it lasts long enough for science to come up with new alternatives when the current one fails. Luckily I still have several choices.

I wonder if the follicles on my scalp will again go nuts and begin flinging hair onto my shoulders and pillowcase. I wonder if my eyebrows will fall out again. I have five o'clock shadow at the inner corners and actually tweezed the other day. I will be sad to see those hard-earned hairs go.

Labels: Abraxane, baldness, barium, blood tests, bone scan, Brian, CT scan, eyebrows, hair, Lita, nausea

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First, let me apologize to those of you who read my blog via rss feed. I've switched to the new Google Beta version of Blogger. This in and of itself isn't really very important, except that now my blog posts can be tagged.

At first I thought I'd make general categories for my blog posts and have everything neatly organized, but then I started listing key terms like "nausea" and "hip" and "infusion" and "eyebrows" that appear in some posts but not others, and now the tags are just lists of descriptors that appear in each post (the term "Brian" appears most frequently, despite Brian's insistence that I don't mention him enough) and I've given up limiting the number of key terms I'm willing to use.

What is a pain for me is that I have to go in and list the keywords for each post manually. I've been doing it gradually because I have 89--now 90 blog posts to edit. What is a pain for you is that each time I edit one of these things, it appears to be showing up as a brand new blog post.

At least it does in my subscription on Bloglines.

So anyway, I'm sorry about the confusion, although this gives you a chance to re-read some pretty interesting posts from way back when without having to use the Internet Archive's Wayback Machine, which is currently the only way to view one of my favorites from when I was just discovering the wonders of the Internet (try 1998).

Hair Dreams

Last night in the course of my dreaming (something involving girl scouts and a flood and driving cars) I was utterly convinced that my long, thick chestnut brown hair needed to be put in a ponytail. I was actually getting somewhat frustrated, because my hair was so thick and silky that it kept slipping out of the ponytail holder and I had to try repeatedly.

It took me a while after I woke up to remember that I did not in fact have long, thick chestnut brown hair that could be put in a ponytail and that instead I look like a pasty eyebrowless gollem with an anemic sea urchin on its head. I don't think I look particularly good in a ponytail under the best of circumstances, so I guess the fact that I can't put my hair in one now is kind of pointless. I'm just tired of having to go through so much effort on a daily basis to look human. I am tired of painting the eyebrows on. I am tired of lining my eyes to simulate lashes or trying to use false lashes. I am tired of wearing detatchable hair.

Labels: blog, Brian, eyebrows, google, hair, rss

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So this past weekend I met up with some ladies from the Young Survivors' Coalition Bulletin Board. I had no idea there were so many young women with breast cancer in this area...somebody on the boards asked, "What, is there something in the water?"

Anyway, we met at Big Buck--which I'd only ever driven past before on I-75. It has a giant beer bottle outside and much of the furniture and lighting fixtures inside are made with antlers. It is HUGE. There are tv screens everywhere, including the bathrooms.

So after a while the cameras materialized and various pictures were taken. I am relieved to know that I can give up on spending any time whatsoever drawing eyebrows on as they are invisible anyway. The most entertaining photo is the one where the people at varying stages of baldness and wigness took off our hair/hats/scarves and lined up in order of hair regrowth from cue-ball smooth to several months' growth. I cannot imagine what the other people in the restaurant must have thought.

See if you can spot me:



(Hint: I'm the short one.)

I only regret that I wasn't terribly outgoing and didn't manage to talk to the ladies at the other end of the table. Next month there is some talk of getting together for a cookie exchange; I will be happy to go with or without my hair.

Labels: baldness, eyebrows, Michigan, star trek, wigs, YSC

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I was unpleasantly surprised when I stepped outside yesterday by a temperature somewhere in the thirties. Before letting the door slam shut, I stuck my foot in the doorway and grabbed a pair of mittens (hand-knit angora and wool, very pretty but not, alas, very windproof) from the front closet. It was equally cold today, and made me wish for a hat.

I'm not sure I want to risk wearing a hat over my "cranial prosthesis." What if, when I go to take the hat off, the hair comes with it? I've often thought about whipping my hair off--especially when in the midst of a hot flash--for shock value, but doubt I'll actually do it.

I may soon be able to forgo wearing the detatchable hair. Not just because I and my medical team have talked about taking a break from the chemotherapy, but because my hair and eyebrows actually seem to be growing back.

I did not lose all of my hair initially, but shaved my head to eliminate the depressingness of having a pillowcase coated with what should have remained on my noggin. I would guess that about a third of my hair remained actively growing, and it dutifully grew in, sparse and icky, whereas my eyebrow hairs drifted away one by one until they were totally gone.

I'm not sure when I noticed that there seemed to be new growth. First I noticed that sometimes it looked like there was more hair on my head depending on where the light came from. The new hairs were evident when backlit, but otherwise invisible. The peach fuzz was also shorter than the sparse dark hairs and wiry greys poking straight up. The invisible fuzz was actually propping up the rest of the hair, rendering it utterly uncontrollable. I've got an undercoat, I realized.

One night I couldn't stand it anymore and took a pair of scissors to the whole mess and cut it all to the same length. My scalp is totally visible and it looks stupid, but the hair feels really neat and I can't stop touching it.

I've actually been worried about this. Does the new growth mean that I'm becoming resistant to the chemotherapy? Has it stopped working? I asked Lita, and she assured me it was not a stupid question. Her explanation was that initiating chemotherapy can "irritate" the folicles, but it's not uncommon for people to have their hair continue growing while on taxol. Abraxane appears to be similar.

My winter coat is not terribly luxurious as of yet, but give it time. It will be done just in time for spring.

Labels: baldness, chemo, cold, eyebrows, hair, hat, hot flash, wigs

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