Janet's Blog

Do you think they'll let me wear my hair like this to work?



Brian and I went to the Detroit Festival of the Arts last Saturday, and went to see the performance art group "Osadia." They do creative hair-sculpture onstage to techno versions of classical music. We saw them a few years ago and found them highly entertaining, so this time we made sure to get good seats.

When the performers take the stage, they select audience members. They communicate non-verbally, which can cause a little confusion if multiple people think they've been picked.

I got picked first! The performer wearing red was a man. He looked around the crowd for his first subject; people were raising their hands anxiously like Hermione Grainger in potions class. I tentative put up my hand and he pointed and nodded at me right away. When I whipped off my bandanna, displaying an obviously bald head, the crowd cheered. Peruse the photo album and you'll see a sequence of events leading to my ending up with a fabulous "hair" style and rad makeup. I had great fun the rest of the day. People came up to me telling me how great I looked, and we got stopped several times so people could take pictures.

Driving home was particularly funny, because I kept trying to get the other drivers' attention. It is amazing how many people just don't look around when they're driving. An older lady did notice, and looked at me disapprovingly. A woman maybe in her 20's saw me and tried conspicuously not to look my way or stare. And another guy was definitely checking out the bizarreness via his sideview mirror, but nobody else looked. (It was a long drive, too.)

Oh well. I have the pictures. And the memory of how much fun that day was.

Slight Medical Update

I went to see my general practitioner today, who was of the opinion--after thumping on my belly like it was a ripe watermelon--that I seem to have a lot of air in there, and that regular meals will help. I wear thigh-high compression stockings that look sort of normal in the morning, but then by the afternoon I have muffin-tops on both of my legs. Food is still very gross to me (except for the Longhorn steak my dad treated us to last night...I was going to link to their website, but music starts playing right away so I opted not to. It's http://www.longhornsteakhouse.com if you really want to go there and listen to the song) so I'm seeing a nutritionist on Tuesday. I went in for I.V. hydration last week and may do so again if I'm still feeling like a raisin in the sun...

I also went back to work last week, found out interesting things about my work this week and am wondering if it's too soon to go on vacation!

Labels: baldness, Brian, Dad, detroit, Dr. Collier, hair, nutritionist

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Thank all that is holy.

Yesterday was the first day I did not feel like there were fire ants crawling on my torso.

I am also allowed to try to reduce my decadron so as to be able to sleep through the night. It didn't work entirely last night, but I did at least only wake up once. I am hoping my mood will improve, seeing as I have been extremely cranky, which can be very unpleasant to be around.

Hair: Not Contained

Sadly, last night I did notice that the front of my hair may be pulled off in chunks, so will most likely proactively remove it all to keep myself from sprinking it all over my hats/pillowcases/places I go in public. I am aware from experience that I will not be able to keep myself from plucking at it compulsively, which has to be gross for people around me.

Labels: baldness, Decadron, hair, shingles

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It's not actually long when I dream about it, which is what makes my hair dreams so annoyingly plausible. I keep dreaming that in the course of going about my dream-business, I check my reflection and run my fingers through my short, glossy brown hair. It is about an inch and a half long, full, thick, and shiny. It never occurs to me to wonder why I'd have so much hair on my head, and the dreams are very seldom just about the hair.

Except that the hair is the only thing I remember upon waking. And it takes me a little while to recall that my hair is really only about a quarter of an inch long, an indistinct brownish khaki, and there's not enough of it to hide my shiny scalp or make it look like anything other than the fact that I'm mostly bald with some dark fuzz on the dome.

I also dream about eyelashes. I put mascara on my dream lashes one night, and got angry when I remembered the next day that I haven't worn mascara in eight months.

I do have tiny stubby lashes and brows growing in, which makes this all the more maddening. It is so slow. Will it ever grow in? Will it get thicker? When? When? This hair growth is despite my chemotherapy, so it's not like I can reasonably expect any at all. I should be happy for the moldy covering I've got.

Of course the annoying Hairs That Must Be Tweezed (you know the ones I'm talking about) have returned with gusto and are doing fine.

Hair is stoopid.

Labels: baldness, chemo, hair

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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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We had a visit with Lita today. Dr. Hayes is often traveling, accepting awards and presenting papers and what not, so I don't actually see him that frequently. It's the price to be paid for having a rock-star oncologist (and by that I mean a very renowned expert in the field of breast cancer), but Lita can handle things just fine.

I'm feeling great, aside from a few residual digestive issues, which may be lingering aftereffects from the Avastin, so I should be mindful but not paranoid. I have no pain anywhere, which is pretty astonishing in light of where I was two years ago.

The EKG I had recently showed that my heart is better than normal. Even if I were to suffer some loss of function from the Adriamycin, it would do just fine. There is a lifetime limit on Adriamycin because it does cause heart damage, but according to Lita, if it does well and keeps me stable, it may be possible to take "heart protecting" drugs to be able to prolong its use.

She also said that I was looking great, and wanted to know what was different. Had I done my eyebrows differently, or something? I said that I've been wearing the blonde wig a lot, and today's was brown. I didn't mention (although this could also be a factor) that I've lost about ten pounds and am nearly in the weight range that was "normal" for me--without having to exert special effort--when I was healthy. I dunno. I just FEEL better. I've been chipper and snarky (to Brian's chagrin, no doubt).

We walked in the door today after coming home from infusion just in time to answer Lita's phone call: she had my lab results which weren't available at the appointment. My CA15.something-or-other test shows that my tumor markers have dropped about forty points. The CEA test (also for tumor markers) blipped up a little bit, but it is Lita's opinion that the CA15 is more specific to breast cancer and therefore more important. I'm pretty happy with that. She also said my liver function was "much improved," which is pretty groovy.

November 5 was the four-year anniversary of my mastectomy. October 30 was the two-year anniversary of being diagnosed with metastatic disease. This could be a depressing time of year if I wasn't feeling so terrific. I got good news, I got my energy back. I'm bald and gimpy, but you can't have everything.

Labels: Adriamycin, Avastin, baldness, Brian, Dr. Hayes, Lita, liver, tumor marker, wigs

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This past weekend I drove to Cleveland to see my dad and visit with my Grandma, aunts, one uncle, and several of my cousin's kids. On the way there, I was pulled over by one of Michigan's finest. I was driving somewhat fast-ish, and figured I deserved a speeding ticket.

When he pulled me over and asked for my license, registration, and proof of insurance, I accidentally gave him the Saturn registration and utterly failed to find my proof of insurance (which turned out to be at home in a different purse). Then he pointed out to me that my license tags had expired. Of course...my birthday came and went. I completely forgot about renewing my tags as the Secretary of State had not seen fit--for the second time this year--to send a renewal notice. Then he also pointed out that the expired registration indicated the car was a four-door and not a two-door. "Were you aware of that?"

"No," I squeaked.

He went back to his vehicle and did whatever it is they do back there while you are squirming in your seat. I might have cried a little bit. I blew my nose.

When he came back, he told me he would let me off with a warning, but I needed to get it taken care of right away. "Be careful," he told me.

I was very surprised, since I actually had committed a number of offenses (although the only one I did on purpose involved the celerity with which I was zipping down the road). I had not put on a wig that day, figuring the back would just get tangled in the car and I'd swap the bandana for hair when I got closer to Grandma's house.

Maybe I inadvertently played the cancer card. Maybe he decided not to give the bald lady a ticket because he'd feel guilty doing it.

It does happen: I think people panic and become unsettled with somebody who looks visibly ill or different. I have on more than one occasion cut to the front of the baby frappuccino line at Race for the Cure. Hollywood stars get clothes and jewelry all the time for looking abnormally fabulous; have you ever seen the amazing bags of swag they get for going to the Oscars? No one's giving me iPods, furs, and expensive perfume. No one need be jealous of us if we play the card from time to time--whether we mean to or not.

Neupogen to boost your white blood cell count: $1000
A Year's worth of chemo and Avastin: $100,000
A trip to the ER for an emergency CT scan: $50
Getting out of a ticket because you're bald and feeble: priceless.

Labels: Avastin, baldness, birthday, chemo, CT scan, Dad, Grandma, hospital, Neupogen, Race for the Cure, vacation, wigs

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I thought my news to report would be about scan results. It was getting time to post something; no fewer than four individual people (not including Brian) contacted me wanting to know how my scans went.

The bone scan was the same as last time, one blobule in the liver might be larger. The chest scan shows two teensy nodules which may be new, or may have been missed by previous scans. This past Tuesday it was decided that I would switch chemotherapies.

This past Tuesday was NOT my usual day to see Lita and Dr. Hayes. The reason I went in on what would have been a day at work, is that over the weekend I started experiencing rear-endal discomfort. Again. This time it was decidedly odd; it felt like my muscles were spasming and just couldn't relax. Oh, and last Thursday at work I peed a blood clot. And again on Sunday. Then Monday night my butt issues became decidedly even more uncomfortable, despite the ibuprofen and the sitz baths.

So Lita asked me to come in to be poked and prodded.

At the appointment (which was at noon), we decided to switch up chemotherapies because it looks like Abraxane just isn't working any more. (A year is not at all a bad run with a chemotherapy drug, so this isn't terrible.) I was offered the choice of Xeloda, which is chemo in pill form--and is purported to not cause hair loss--or Adriamycin, one of the ol' standbys for treating breast cancer, which has a ghastly reputation although Lita claims the side effects aren't that bad given how they will treat me.

I thought about it, and had eyebrows--glorious eyebrows!--briefly in my grasp. I asked for Xeloda. Then Dr. Hayes reconsidered based on the mouth sores Xeloda can cause; such sores can occur at the other end, too, and in light of my recurring discomfort, he doesn't want me to have it.

Then they asked me to go to the emergency room for further evaluation, since ailments of the behind are out of their realm of expertise. Brian and I went to lunch then went back to the ER to go to the hospital.

First we sat in a waiting room for a while. Then they came and took several vials of blood and wanted a urine sample. Then we went and sat in the combined patient/visitor waiting room for a couple of hours. Then I was called and they took us to a room where I changed into a gown. Then the fun began. Periodically technicians would come to take my vitals; I always have to explain the blood pressure issue (right forearm only). I got very thirsty and was not allowed water, although eventually somebody brought me a small cup of ice chips. A doctor came and got detailed information, then, after conferring with Lita, decided more cultures were needed so they would know what kind of exams they could do. So somebody came to access my port and get more blood--those were some of the biggest honkin' vials I've ever seen. Somebody also came with lidocaine gel, which should help soothe the discomfort and not have the icky effects I had with the last tube of cream the ER people gave me (nitroglycerin). After deciding my neutrophil count was too low, the doctor decided on a CT scan, but told me the barium wouldn't be necessary. I gave her two big thumbs up and decided I could bear the agony of the iodine contrast since there was to be no barfium! Woohoo!

About an hour later, a nurse walked in shaking a bottle of barium.

I cried.

Then someone came to try to insert an IV for the contrast. Tried, failed, and had to go get someone else. The man who came next pored over my arm for a while, and concluded he couldn't find a vein, so would have to call someone who has an ultrasound machine that helps find veins. About an hour (and a bottle of barium later) the new technician came by and when informed that I had a port, told me the ultrasound method was best for finding deep veins in the location where my port is, so wouldn't work for me. She did the painful tapping thing on my arm and was able to find a vein in my hand, so I finally got my IV.

In the meantime, the doctor came by again. By this time it was about 9p.m. She explained to me that the barium was necessary after all--or so she had been convinced by the radiologist--because otherwise if there was an abscess (I was pretty sure I didn't have one of THOSE), it wouldn't show up as distinct from any liquid contents of the bowels. She also informed me that since they wanted to be sure the barium had gone all the way through, I'd have to wait until after having a bowel movement before they could do the scan.

"Usually that happens about 3-4 hours after patients drink the barium preparation."

It wasn't enough that I, a patient in the ER with an observed fissure, was going to have to deal with the unpleasant aftereffects of barium knowing it was going to hurt like a mofo coming out, but finding out I was going to be at the hospital until the ridiculously wee hours was the final straw. I had a 9a.m. meeting scheduled for Wednesday. This couldn't be happening.

So we waited. My stomach burbled. We watched tv. Brian went to get himself a candy bar. Finally the nurse came and told me I'd have to provide another urine sample. I suspect it was a ruse to get me to the bathroom, but I can't be sure. In any case, the barium (painfully) did its work, and I got sent for the CT scan.

When the scan was over, the doctor came back to the room and told me her shift ended hours ago and that she was going home, but that I would have to wait 45 more minutes for the CT scan results.

"I can see you're upset," she said. "I can't blame you."

She could SEE I was upset because I had a nasty expression on my face and was a seething pile of misery and impotent rage. If my hand had not been impaired by an IV and my butt hadn't felt so bad, I would have launched out of the bed and throttled her.

She said she had explained my situation to her colleague, had left a prescription for a larger tube of gel, and that she was sorry I had to be there so late.

You and me both, lady.

The other doctor came by with the scan results when I had gotten up to go use the restroom again. I made sure to slam the door as loudly as I could and looked for supplies to pilfer.

There was no abscess. I know my doctors want to do the responsible thing and fully investigate things that could implode in my innards and kill me, but I am not submitting to this kind of marathon-ER thing again. I should have walked out when the barium walked in. We spent over twelve F*cking hours at the ER, and came away with "nope, no abscess" and a damn tube of gel. It was past two when we got home. And because of the lovely effects of drinking two bottles of stuff that insists on leaving your body in the most unpleasant way possible, I was not in bed until about 3:30.

I was so tired and disoriented when I got up this morning at 7 (I needed time to get ready for the day of work I absolutely could not miss--and I actually did make it in time. I deserve a medal) that when I staggered into the bathroom first thing to pee, I got very confused about a sensation of numbness when wiping myself that I just couldn't account for at first.

Until I noticed that I hadn't actually managed to pull down my underwear.

I hate the f*cking ER.

Labels: Abraxane, Adriamycin, baldness, barium, bone scan, Brian, CT scan, Dr. Hayes, fissure, hospital, IV, Lita, liver, lungs, Xeloda

2 comments

I don't care for Robert Frost, personally, but he did at least speak truly when he said, "good fences make good neighbors." Maybe he meant it ironically, but as a new condo owner, I think one can certainly have an overabundance of the neighborly influence.

One day the neighborly condo association president invited herself over to bring me the new folder of contact information and bylaws. That's fine, but it happened to be a day on which I was feeling quite icky. I was in pajamas, had no hair or makeup on, and felt kind of ill. She wanted to invite herself in to sit on my sofa and go over the contents of the folder.

"Now isn't really a good time," I told her, "But I'd be happy to look at it later." I had grabbed a hat to put on my bald head which was lined with faux fur and too hot to be wearing that day. I started to sweat. Instead of handing me the folder, the old lady insisted on standing in my open doorway, reading verbatim the contents of the folder as flies buzzed in and out the door.

She later saw fit to let Brian know that the sticker on his license plate was expired (it was; the expiration date is my mom's birthday so it totally slipped my mind, and the Secretary of State did not send us the renewal notice) because he had to park in a spot kitty-corner to her building. Brian initially tried to park under the trees close to our garage, but one of our neighbors informed him that it was a fire lane and parking wasn't allowed there. So now Brian parks where the condo association president lady can inspect his expired sticker (and suggest if it's not taken care of, the police will be notified), and our neighbor can park in the fire lane under the trees.

Those same neighbors on one side have taken to heart the whole fence issue and have constructed a Wall of Doom^tm in the communal garage. What started as a pile of gardening crap, shelves, wagons, boxes, bags, and who knows what else, has been fortified by means of plywood, additional shelving units, poster board, and clips into something that is immovable and comes right up to the scored line in the pavement.

Technically, the space on that side of the scored line is theirs, but it means when I pull my car into the garage, I can't open the car door all the way. It's difficult under the best of circumstances to haul my gimpy carcass out of the car (which is rather sporty and low to the ground), but if I have to squeeze out of a door that is trying to slam shut on me it's especially hard.

The space over there is also filled with a hanging hockey net, several bikes with layers upon layers of dust, and a crazy assortment of shoes, bags, candy canes hanging off of the hockey net.

Our neighbor on the other side has a tidier garage space. She used to apologize for her dog's barking, but since Brian brought his Harley over from my mom's and has started riding it to work on nice days, the neighbor no longer apologizes about the noise her dog makes. According to the condo association bylaws, motorcycles must be kept parked in the garage. In order to do so, Brian has to park sideways in front of my car--he found a cute little flashing signal that lets me know when to stop pulling forward so I don't knock the bike over. The neighbor has since put a brand-new carpet runner in the garage in the area on her side of the scored pavement line, where Brian needs to wheel his bike in order to turn it around. I told him to take a carpet remnant from when we had the master bedroom carpet replaced to put over her carpet runner so she wouldn't be able to complain that his bike messed it up.

What kind of passive-aggressive doofus puts a carpet runner in the garage?

Evidently, both neighbors are dissatisfied at the condition in which our front garden space is kept. I enjoy gardening and meant to do some planting this year, but was more tired from the chemo than I thought I would be. I was also unexpectedly ill several times. I'm still pretty stiff, too. So I didn't do planting, and the weeds started to pop up.

I hoped the condo association would deal with the dead bush soon. It was there when we moved in, and I hated that wretched eyesore.

At my mom's condo, the association maintains the lawns, trees, and shrubberies. I expected it to be the same at my condo. After all, we have to get special permission to put in shrubs or do landscaping. When were they going to take out that hideous bush?

A day before Brian and I were to leave for a Fourth of July weekend vacation, we got a letter from the association informing us that we had seven days to remove the offending plant, or we would be assessed a fine of a hundred-something dollars. I was utterly flummoxed--why wouldn't anybody say anything HELPFUL about the bush before contacting the association about penalties? Where on earth were we going to find somebody to remove the shrub before leaving the next day? Brian had to get out there with a hacksaw to chop the thing down, then since there was no trash pickup that evening (and putting whole dead shrubs into the trash pickup pile isn't allowed, I'm sure), he had to jam the thing into his car--which is now full of brown needles--and sneak it into the dumpster at our old apartment.

Brian and I also spent some time pulling out the obvious weeds from the remaining (somewhat slug-eaten) violets, when the neighbor with the dog came out to pick at imaginary weeds in her own garden space.

"Pulling weeds, eh?" she asked us as she picked maple seeds out of her garden's gravel. She then proceeded to tell us about a neighbor who never weeded and about what a horrible eyesore it was. Somewhere over there--she waved indistinctly. I didn't listen closely. Our neighbors could have said something helpful about the plant problem before getting us threatened with monetary penalties.

About two weeks ago I came home from work and arrived only slightly after Brian. I heard him talking with someone outside (he had taken Baxter outside) and tried to listen from the window as I had already taken my hair off. I couldn't hear anything, so I grabbed a baseball cap and went outside to say hello.

Brian was talking to the neighbor with the Wall of Doom^tm, who immediately said to me, "Brian told me about your condition--I'm so sorry. If there's anything I can do--if you need a ride somewhere, or just want some company, let me know." I thanked her.

She said she and the other neighbor had been talking about me. "We thought you had that, what's it called--when you lose your hair..."

"Alopecia?" I said.

"That's right. We thought maybe you had alopecia."

Of course. The reason I'm a crappy gardener and have weeds and let the license tags expire and don't remove dead bushes, and come to the door in my pajamas and don't let people in is that I'm LAZY and have alopecia.

I'm glad that's all cleared up.

Labels: baldness, Brian, chemo, condominium, neighbor

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This did not happen to me.

This happened to a woman who went to SeaWorld, San Antonio with her family. After riding other rides (including a large waterslide) with her cap on, she boarded a slow-moving children's ride with her two-year old. The ride involved spinning paint buckets; it was not vigorous enough to require seatbelts.

"I'm sitting there with my two-year old and the attendant tells me that I have to remove my cap. I explain that I have no hair and had ridden other rides with no problem. She insists. I get really angry and fling it to the side off the ride and sit there with my bald head. My husband comes to my rescue and offers to ride the ride. I leave in tears while he takes my place."

Way to go, SeaWorld. You made a woman with cancer uncover her head and cry in front of not only her two-year old child but god knows how many strangers.

She says she decided to complain to the attendant's supervisor, who sympathized but told her it is the "policy" to have no loose objects as they may fly off and interfere with the machinery. She watched as many people rode with sunglasses and eyeglasses, which have the same potential for flying off as a cap. The sign on the ride actually says that "loose objects must be secured," not that "loose objects must be taken off the heads of patients undergoing chemotherapy." (I can guarantee you that people undergoing chemotherapy are quite used to securing the hats on their heads.)

SeaWorld is run by Busch Entertainment Corporation, a subsidiary of Anheuser-Busch, best known for making Budweiser.

Anheuser-Busch and Busch Entertainment Corporation clearly need to provide more guidance to their front-line employees and low-level supervisors regarding when it is appropriate to think and act compassionately rather than mindlessly (and rather inaccurately) enforcing some "rule" which results in the humiliation of paying customers.

In fact, this is something everyone at the company could stand to improve upon...

This did not happen to me, but I would certainly be writing to the company's board of directors regarding the horrible experience if it had.

Busch Entertainment Corporation:
Keith M. Kasen, Chairman of the Board and President (he also served as Executive Vice President and General Manager of the SeaWorld theme parks in Orlando, Florida [2000-2003] and in San Antonio, Texas [1997-2000])
David J. Grabe, Vice President of Finance
David L. Hammer, Vice President of Human Resources

Also, the "Key Executives" listed for Anheuser-Busch, the parent company are:
Patrick T. Stokes - Chairman, Subsidiary Officer
August A. Busch IV - Chief Executive Officer, President, Subsidiary Officer

One Busch Place
St. Louis, MO 63118
United States
Phone: 314 577-2000
Fax: 314 577-2900

Labels: baldness, chemo, hair, hat, SeaWorld

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The other night I watched an Entertainment Tonight segment on Mr. T's battle with cancer. Elizabeth Edwards and Tony Snow are both dealing with recurrences. Melissa Etheridge sings about her ordeal. Ted Koppel aired a documentary about his friend Leroy Sievers, a journalist. Lance. I commented to Brian that "Everybody's doing it... I can't believe how 'hip' I am!"

"Cancer is the new Black," he said.

I've never been in on a trend before. As a kid, I had dorky hair and clothes. When I moved from California to Tennessee, my mom bought me school clothes that would have been reasonably accepted in Northern California (stirrup pants with oversized sweatshirts and shaker sweaters), but in Tennessee--which was a couple of years behind--made me look like I was wearing my pajamas to school.

It's not that cancer is some new scourge; it's that people are talking about it like never before. Look at me--not only am I talking about it, I am blogging about it, which is like the double-whammy of trends, these days. I'm so edgy, I might accidentally cut myself.

And I don't have to worry about growing out or cutting a dorky hairstyle: all I have to do is take that one off and slap another one on my lumpy, bald head. Chic.

Labels: baldness, blog, Brian, mom

3 comments

Anybody remember that Far Side cartoon? Sadly, I cannot link to any panels without causing Mr. Larson distress and loss of royalties, or something.

Baxter is no longer allowed to play with the neighbor's fleabag. We will be going to the vet Saturday for vaccinations and a flea treatment. Man, I hate those things. Skippy never has fleas. I only ever noticed one flea on my dog, Tribble, and if any dog was likely to be able to harbor vermin, it would have been that one (hairball). Brian claims to have not noticed anything amiss. Since Baxter's new thing is to sit on the back of the sofa above my head (he likes to lick my bald scalp, which makes me worry about what will happen when I have follicularly challenged guests), I am rightfully concerned about this.

Baxter has also successfully managed to go down the stairs several times on his own. He will occasionally forget that he has done so, and will cry at the top of the stairs. This is both good and bad. It is good because carrying him down the stairs is perilous since he tends to be rather...squirmy. It is bad because the more independence he has, the more areas have to be manually blocked to keep him from running amok and destroying things. Puppies are not to be trusted. I dread the day he tries the basement stairs on his own. So much stuff to be destroyed...I think we are going to need some more baby gates.

Labels: baldness, Baxter, Brian

3 comments

Sometimes I watch reruns of "America's Next Top Model." I can't explain why; I just can't seem to help myself.

At any rate, the other day during a marathon showing of season six, in the makeover episode, one girl (a pageant queen) was traumatized and horrified to find out that they wanted to cut off her long hair to make her look like Mia Farrow in Rosemary's Baby. She cried and carried on, and they ended up not cutting her hair as closely as originally planned. I can certainly relate to the emotional trauma of losing one's hair, but it's not like she was going to be permanently disfigured, and she'd look a bazillion times better than I do with ultra-short hair.

The thing is, Tyra Banks and her crew of fashion professionals didn't like the short-but-not-so-short hair, and insisted that the girl have another inch cropped off. Keep in mind that these people are competing for a $100,000 modeling contract and for their (admittedly somewhat shallow) dreams to come true. Keep in mind also that the people directing the makeovers are highly successful in the field into which these girls are trying to enter. Furthermore, a model's job is to look like what the client wants, not the other way around. Even further than that, hair (usually, at least in healthy people) grows back or can be supplemented at any time with hair extensions.

She refused, claiming that she had to remain "true to" herself.

For f*ck's sake, if your "true self" can be boiled down to one inch of HAIR, what kind of person are you?

I submit that if any of those girls ever have a problem with getting their tresses lopped, that they be sent to visit a cancer treatment center. Better yet, a children's cancer treatment center. Then ask them whether it's hair that makes someone beautiful.

Labels: baldness, hair

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I actually have a box of hair in the back seat of my car right now, and it doesn't seem very dumb to me at all.

I already have two very nice wigs that I got from Les Cheveux (whose website is remarkably unhelpful, although I did have a good experience at the shop) in Birmingham, Michigan: a synthetic wig that is brown with gold highlights, and a very top-of-the-line human hair wig that has a "lace front" and is a beautiful red color.

I have a couple of costume wigs in weird colors; there's the purple bob with lilac highlights, the long bright turquoise wig that just doesn't look right because I look stupid with long hair, and the unfortunate blond job which I bought in a fit of optimism (luckily it wasn't expensive) after watching too many episodes of Alias. How is it that Jennifer Garner looks good in every hair color there is? I just don't get it...

I also have a quick headband-with-hair, but the seam is so itchy I hate it.

After the umpteenth time of getting my necklace clasp caught in the back of my nice wigs, however--at least it doesn't hurt when I disentangle it--I thought it might be nice to have a couple of shorter styles.

So I decided to get myself a short, flippy style and a bob. The package from Wowwigs.com was held for me at the post office, and I will be opening my box of hair when I get home.

Labels: baldness, hair, wigs

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Blood test results show one tumor marker down (yay!), one blipped up somewhat (boo!) and my liver function tests show some results that are of enough concern to warrant a new battery of scans, including a bone scan and the ever-popular Barium Barrage, or "CT with contrast" (%$#@!).

I contacted Lita to find out about getting a "power port" but changed my mind when speaking to the scheduling people, who indicated that a power port has to go in the chest and cannot be placed in the arm.

For now I am going to have to live with the agonizing jabby-jab-jab of IV placement for the contrast dye.

Also, I absolutely must resume the Neupogen shots, which are for the purpose of boosting white blood cell counts and feeling like one is being stung by a bee without having to go outside or risk exposure to pollen. And a significant portion of my remaining twelve hairs have decided to shuffle off the mortal coil that is my head.

Labels: baldness, barium, blood tests, bone scan, CT scan, hair, IV, Lita, Neupogen, port, tumor marker

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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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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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The upstairs neighbor lady and her peeping tomlets moved out a couple of weeks ago. I briefly saw her as she was loading items into her SUV and she gave me a friendly nod. I never did speak to her directly, which is a shame. I'm not sorry to see her ill-behaved children leave my sphere of comfort, though.

Labels: baldness, kids

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This evening after we had gotten home from a hot evening of fishing and a side trip to Subway for some sandwiches, I noticed that there were two kids looking into our apartment through the front window. I thought it was a little strange before realizing that I had taken my hat and scarf off (it was too hot to wear a wig to go fishing), and when the kids saw me looking at them, they took off running and ran upstairs to the apartment on the second floor.

A little while later, they were back, again trying to peek inside.

I don't really know what to do about this. It's not really appropriate under any circumstances for people to be purposefully peeking in somebody's front window (Brian says they have done this before), and I wanted to perhaps try to talk to the mother about their behavior.

Brian suggested that 10 p.m. on a Saturday night might not be the best time to address this issue. I think he may be right.

Even under normal circumstances I wouldn't want to have somebody looking through my front window into my home. It's worse now, though, because home is the only place I really felt like I didn't have to conceal my loss of hair. But now apparently I do, and I shouldn't have to. I can understand kids having curiosity about the person who looks different or funny with no hair, but I shouldn't have to feel like I'm a freakshow.

We may try talking to the mother tomorrow morning; I don't know for sure. I don't know whether to bring up my circumstances or whether that would just make everyone feel worse than is necessary.

At this point, however, I'm less inclined to care about somebody else feeling bad than I am about myself. I have enough to worry about, and if somebody has to get embarrassed for me to feel better about being in my own home, then fine. Maybe they deserve it.

Labels: baldness, Brian, hair, hat, kids, scarf, wigs

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Samson is the biblical hero whose mighty strength lay in his fabulous unshorn hair. When his hair is cut, he loses his power.

I only mention this because today I have hair again for the first time in weeks, and I feel completely and utterly exhausted. The tendrils wafting about my face are most certainly NOT imbuing me with any kind of energy, strength, verve, or power. I just want to crawl into bed and sleep, which is a little bit unfortunate because I'm not currently in a position to do so (I'm tying at work...shhhh, don't tell).

I don't know if my physical weakness today is owing to wearing hair that isn't mine, or is just a natural ebb or flow of the chemotherapy. Maybe, as with Samson, the loss of my natural hair spells weakness and feebleness. Maybe it's just a result of a draining course of medication. Maybe adding extra hair is exacerbating my weakness.

Maybe it's just coincidence and I'm being foolish.

I actually do like my new hair, but I'm not sure I have the energy to fight with the insurance company on this issue. When I asked over the phone, I was told that wigs are "not covered" by my insurance policy. The hair store advised me to refer to it as a "cranial prosthesis" and gave me a list of steps to try fighting the insurance company. After all, they would pay for a breast prosthesis if I wanted or needed one; this really isn't different--except that the top of one's head is more difficult to conceal.

I'm sure bald men everywhere are playing their tiny little violins just for me. But it's not a natural, gradual genetic circumstance that led me to this. It was sudden, shocking, and one of the more horrible outward signs of this betrayal by my body. Some of my breast cells are going nuts, have migrated, and are attacking my spine and organs; and now the treatment is leveling destruction on one of the features I've always felt pretty good about. It just isn't fair.

Of course life isn't fair, but it doesn't have to be unmitigatingly awful, either.

Brian says he likes my bald 'do. I guess it's not the worst it could be; at least the treatment seems to be having a good effect on the tumor markers. Dr. Hayes views me as a stunning success story when you compare my current status to how I was doing in December. Then, I couldn't walk, I could move without excruciating pain, I was vomiting daily, and wasn't strong enough to bear chemotherapy. I suppose I should be grateful that things are better than they were.

I still want my hair back, though, dammit.

Labels: baldness, chemo, Dr. Hayes, hair, insurance, tired, wigs

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Since I tired of the perpetual rain of short hairs, and I tired of having the coat of hair removed from my pillow after each use, I asked Brian to buzz the rest of my hair the other night. Instead of looking like Smeagol, I now resemble a slightly pasty sea urchin.

Last week I went to a swanky wig store in Birmingham, Michigan and was fitted for two "cranial prosthetics." They gave me a sheet with step-by-step details on getting your insurance company to pay for your wigs. The first advice is to not call it a wig, but a "cranial prosthesis." My insurance company has informed me that wigs are not covered under my policy. The guide sheet points out that a wig is something worn for cosmetic purposes, whereas a cranial prosthesis is worn to cover hair lost due to medical reasons, and is no different from a prosthetic worn to replicate a breast lost due to medical reasons.

The first wig was supposed to be done in a week, but I have yet to hear from the wig lady. In the meantime I am wearing scarf/hat combos. Today I look rather like a gypsy. The stubbly hairs that are left are helping hold my green-blue silk scarf in place which my dad brought back from his trip to Thailand. I'm worried it will slip and fall off, revealing my new prison-inmate 'do.

I feel very conspicuous and weird, in any case. I seriously doubt a wig will fix that, since almost everyone around me will know it's a wig.

Oh well. Damned if I do, damned if I don't.

Labels: baldness, Brian, hair, hat, insurance, scarf, wigs

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This is a possible side effect of many chemo drugs, including taxol, of which I received two doses, and abraxane, its non-tree-derived replacement which I received this week. I have hair coming out in tufts.

I can run my fingers through my hair and pull out a prodigious amount, and the brush pulls out an alarming amount at once. Should I stop brushing my hair? Should I cut it and watch as the shorter strands snowfall around my head and shoulders? Should I shave it all now? Should I pretend nothing is amiss?

What to do, what to do...

Labels: Abraxane, baldness, chemo, hair, Taxol

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