Janet's Blog

Five years ago today I had a biopsy. I was very surprised that my biopsy would involve taking out a golf-ball sized chunk since I thought biopsies consisted of taking a core sample with a needle. Both are true, but I didn't have a solid mass so they needed to do surgery. My biopsy was a guided wire procedure (which I will never submit to again) and I fainted while sitting at the mammogram machine. After the biopsy and after puking from the anesthesia, they let me go home.

I went to a computer training class the next day. I remember very clearly sitting in the classroom and that I had a PC in front of me and that the instructor wrote some stuff on the board. I remember that I walked to Einstein Bagel for lunch and I remember what I had to eat. I haven't the slightest idea of the content of the class, though. It was a class on cgi, which I haven't the slightest idea how to use.

The next week I had an appointment with the surgeon, who did not have the pathology results yet. I asked him if my breast (which looked very sad, bruised, and deflated) would return to a natural shape on its own, or what. He told me it would fill out on its own and to quit looking in the mirror.

A couple of days later, I got a call from the surgeon's office to set up another appointment to go over the results. It was strongly suggested that I have someone with me. Soon afterwards I got a very panicked call from my primary care physician. She was very nervous, and didn't know what to say. So she blurted out that she was so sorry that the results showed I had cancer.

I stood in my kitchen and thought, "No wonder they want somebody to come with me to see the surgeon."

"Ok," I said.

It wasn't really Ok.

Whatever happened to, "You're so young, these things are almost always nothing," or "3 out of 4 times it turns out to be harmless"? By the time I got to my biopsy, it was "You have a 90% chance of being totally fine."

My mom took me to the appointment. Dr. Barbi had a box of tissues, many explanatory brochures and pictures, as well as sample drains to show me what would be involved to care for the wounds. I sat there dully, listening to him say how lucky it was that this was caught early. When it's caught early, treatment is very successful.

I had a tiny bit of microinvasion. Some cells were beginning to escape the confines of the ducts, but he was satisfied that this was still extremely early. I needed to coordinate with a plastic surgeon, and there were two that he typically worked with. I called the first name on the list and then had surgery in November.

Tiny cells just starting to bust out.

Diagnosis in August, surgery in November. Was that too long? No, I was assured. Plus, I opted to do chemotherapy which was sure to take care of any pesky floating cancer cells. 98% success rate for the type of cancer I had.

I "sailed" through treatment. I was called a "trooper." Success!

And technically, I am a "success." It's one of the happier statistics that I can say I'm still alive five years after treatment. I had always assumed that this meant being disease free five years later, but it does not.

I kind of hoped for more.

I certainly didn't hope for a broken, mangled hip. I didn't hope for an enlarged spleen and ascites from a damaged liver. I didn't hope for tumors in my brain. I didn't hope for multiple hospitalizations both from the disease itself and secondary infections.

The fact that I feel reasonably well, although somewhat wimpy and water-logged is amazing, but I still carry around anger about what I perceive as the "lies" that I was told about this condition. I still wonder about the gap between diagnosis and treatment. I wonder about the lack of follow-up and certainty on the part of my doctors that my early-stage cancer was treated with spectacular success, which resulted in months of inappropriately treated agony.

And I wonder why the emphasis on "early detection" is more evident than research for treatment of people who are still alive after five years, but waiting for a cure.

Labels: ascites, biopsy, chemo, DCIS, Dr. Barbi, hip, hospital, liver, mammogram, mom, spleen, surgery

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It's not really "gloom and doom" but it is uncharacteristically non-optimistic.

My back pain has continued past the time of undue stress. Instead of feeling like a muscle got pulled on the right from wrestling with a 20 pound puppy who doesn't want his feet wiped off, or a stress spasm on the left from having too much to do and too little time, this goes down the center of my back right below the shoulder blades. I start out the day just fine, but in the evening the effort of holding myself upright takes its toll and I have to lie down.

I totally have no expertise in reading a bone scan, but at my scan on Thursday I imagined that my spine was more "lit up" than usual. I rather expect Dr. Hayes (or Lita, since the man is busy and may be at some conference or other) to tell me I am to be switched to another type of chemo.

If not, I need to ask why not. I'm just not convinced this one is working. Which is a shame, really, since except for the back pain (and some heartburny-type issues for which I am taking prilosec) I feel pretty good. Well, except for feeling routinely overheated in the mornings before my alarm goes off, and feeling somewhat icky before sitting up--it usually clears up after I'm upright for a while.

Maybe I'm just gearing up to expect the worst so that when I get to my appointment I will be pleasantly surprised that my tumor markers are holding steady and the back pain is likely to be from the exertion of physical therapy.

I doubt it.

Labels: bone scan, chemo, Dr. Hayes, hot flash, Lita

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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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Since switching from Abraxane to Adriamycin, I have had more energy. Sure, the digestive issues have been bad, but eliminating one of the anti-nausea medications helped (we replaced the intravenous Aloxi with Zofran pills that can be taken as-needed) and I think I have it under control.

I walk faster. I noticed it the other day when I was heading down the back hallway at work. For months I've been sort of shambling around like one of the extras in Shaun of the Dead--and now I'm almost walking normally. I tilt to the side because my legs are different lengths, but concentrating a little keeps me from bumping into walls.

I have grocery shopped and cooked meals. Brian is amazed. Shrimp boil and crabcakes. Stuffed peppers. Black bean soup. Chicken or bean enchiladas. I'm actually planning to make risotto this weekend, so help me.

It doesn't stop there: I've been hanging pictures on the walls, assembling electronics, clearing clutter, sorting mail, straightening bathrooms, and catching up on some reading. I've been very talkative and have not felt the need to go to sleep early. What is with this crazy activity level? Is this how I was when I was "normal"?

I feel great.

I sure hope the new chemotherapy drug is actually working. It would suck to feel so terrific only to have to switch immediately to something else.

Labels: Abraxane, Adriamycin, Brian, chemo

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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 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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Just in case anyone is hyperventilating on the edge of his or her seat waiting to hear the results of my scans: nothing is significantly different. According to the reports, there may be "new areas of uptake" on the upper thoracic spine, and the "dome of the liver" might show a difference, but Lita showed me side-by-side comparisons with the scans from three months ago, and it was really hard to see any difference. There are so many blobs in my liver, the possible increase in size of one hardly makes a difference. Dr. Hayes suggested sitting tight for now, rescanning in a few months, and then making a decision whether to continue with Abraxane.

He said being ill from other things--like a horrible butt issue--might cause a false positive. I'm not sure I'm convinced that my fissure could somehow impact a bone scan, but whatever.

Also, Lita and Dr. Hayes decided they wanted to look at my butt to laugh and point, I'm sure. I had to curl up sideways on the exam table and I said, "This is the most undignified thing ever." They said they would ask a surgeon they both trust about whether I was on a suitable antibiotic and that I'd skip chemo that week (this was last Tuesday), and then skip the Avastin today and just go with the Abraxane and Zometa. (The nurse was confused and brought out a Neupogen shot, which we never do the day of chemo--to be honest, we hardly do it at all, although that needs to change since I'm sure the reason I was so sick this past year is because I kept weaseling out of having Brian give me the shots--she felt bad because each shot costs $3,000; luckily somebody else in the infusion area wanted it so it didn't go to waste.)

I am happy to report that my butt is feeling much better now, so I am also able to sit on the edge of my seat.

Labels: Abraxane, Avastin, bone scan, Brian, chemo, CT scan, Dr. Hayes, fissure, infusion, Lita, Neupogen

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What do you think? Is there a market for something like this? Do you think they'd sell 'em at Hot Topic?

I want one just because the idea of alluding to the F-word amuses me. I also find the notion of conceptually flipping the bird to "awareness" on my already-mutilated bosom to be somehow just and appropriate. I've got plenty of awareness. I've got more than I need. I don't need to be made aware; I need a bloody cure already.

Just in case anyone is worried about this, let me state for the record that I don't personally mind pink ribbons. I had one on my car; I have pink ribbon beanie babies both at home and the office, and I am happy to have not one, but THREE pink-ribbon motorcycle-riding teddy bear figurines (multiple family members and friends independently concluded it would be the perfect gift for me). I prefer seeing pink ribbon magnets on people's cars to those of other colors; it makes me feel pretty good to know that there are people pulling for me.

Unfortunately, the pervasiveness of the pink ribbon (you can buy pink kitchen mixers, for crying out loud) has disguised the fact that the job isn't done yet. People think that because the pink ribbon campaign is so successful, breast cancer research doesn't need any more money or attention.

"Awareness" often goes hand-in-hand with "early detection" or "prevention," neither of which does me a damn bit of good. I'm sure those things will help other people, but I find I am growing steadily more self-centered and don't care as much about other people and their "prevention" as I do about the fact that my medications are keeping me alive, but brutalizing my body and self-esteem.

I am very aware of how to detect cancer. I am very aware of what can happen if it goes undetected for a stupidly long time. I am aware of the scars on my chest, belly, arm, psyche, and memory.

I'll be waiting for my cure.

Labels: chemo, motorcycle, pink ribbon

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Frodo: I wish the ring had never come to me. I wish none of this had happened.

Gandalf: So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us.

Brian and I have been rewatching the Lord of the Rings movies on dvd. I haven't watched them with him before; I think the last time I saw them was some time late in 2004. I loved the films; I have both the theatrical releases and the extended versions on dvd. I have at least one of the soundtrack CDs. I have been to see "Lord of the Rings in Concert" which is performed with a slideshow of concept art from the movies. I also thoroughly embarrassed my friends Sarah and Danielle by knowing the actual poem recounting how many rings there are when we saw the display of art, props and costumes at the Museum of Science in Boston. ("Three rings for elven kings under the sky/Seven for the dwarf lords in their halls of stone...")

Naturally, the way I see the world now is colored by experiences I didn't have then, so when Frodo and Gandalf talked about the burden of carrying the ring, I saw it quite differently and nearly wept. I actually clamped my hand over my mouth and tears streamed down my face.

I wondered if there was an analogy to be made between the burden of carrying the One Ring and with cancer. Frodo, through the course of the movies, becomes more and more worn down and exhausted. Galadriel comments at a pivotal moment in The Two Towers that Frodo is coming to understand that his quest will claim his life. I get more and more tired with each chemo treatment, and there are a limited number of chemotherapy drugs available. This disease might claim my life; it has certainly been irrevocably altered. Frodo takes pity on Gollum because he recognizes himself in the poor creature, and Gollum is the only one really understands fully how Frodo feels.

My disease differs from the One Ring in a very crucial sense: it is not self-aware. Cancer is horrible and sucks beyond all belief, but it is not inherently evil. It does not have purpose; it is a cellular aberration that medicine does not yet know how to fully deal with. I should be grateful that at least there aren't overtly malevolent forces at work; ringwraiths are not coming to kill me in my sleep.

Despite this, I occasionally get consumed by My Life as a Cancer Patient. Maybe if I let my neighbors know how tired I've been from chemotherapy, the homeowner's association will lighten up about the weeds in the front flower bed. Maybe if I have a candid discussion at work about what my level of endurance really is and how I often work from home and on weekends, people would be more understanding and less inclined to think of me as "unreliable." My assumption at the wedding a few weeks ago was that everybody was caught up in my cancer drama; maybe, like Todd and my friend Melissa have since pointed out, they're just really glad Brian didn't end up with somebody horrible and they're happy I'm a terrific person.

The other parts of the analogy work, though. Frodo assumes he is alone and tries to leave the Fellowship to go off by himself. Sam refuses to accept that as the appropriate course and clings to him. Brian has steadfastly refused to let me go on without support, and my friend Melissa reminds me that I, in fact, have a fellowship of my own. My friends and family--and even internet strangers--while not having the same experience I do, are pulling for me and that can make all the difference.

I wish my burden had never come to me, too, but all I can do is decide what to do with the time that is given to me. At least I don't have to do it alone.

Labels: Brian, chemo, condominium, Danielle, Sarah, Todd

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(Feel free to click the image for a close-up. It's icky.)

Do you keep things in your pockets? Keys? Spare change? An empty gum wrapper? Your work ID card?

What if, when you went to reach in to your pocket to retrieve something, your fingernails didn't come out with your hand? The photo to the left illustrates a potential side-effect of Abraxane. The part of the nail below the green-black portion is the part that is still attached to my finger; all but my pinky on my right hand--and so far three of the nails on my left--have lifted off the nail bed. It's uncomfortable and troubling.

At my last doctor's appointment, I was hoping for advice that would help. Could I use nail glue to glue them down? What about stuff that might get stuck under there? Will they detach completely, or will the lifted parts grow out? Lita didn't know for sure. They might fall off completely. She did say that nails that lift from chemo treatments tend to not get nail infections, and if they smell weird, to use epsom salts. Dr. Hayes helpfully suggested, "wear nail polish."

Great.

My fingertips are sore. Typing is irritating and I can't open things very easily. Baxter has no idea that grabbing my hand with his little teeth might result in an unfortunate snack.

Finally, some non-icky photos:

Labels: Abraxane, Baxter, chemo, Dr. Hayes, Lita, nails

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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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How often do you use your fingernails, and what are they used for?

Do you scratch your nose? Open your can of soda? Put on a necklace? Fasten a puppy's leash? Open a box of cereal? Take cellophane off of your new dvd?

For some reason I've got pain in my most-used fingertips (and my big left toe as well as both pinky toes). My index fingers are both tender, my right thumb is quite sore, my left thumb is a little bit sore, and it's starting in the middle fingers of both hands. A few of the nails actually show red marks in the middle; I don't know if the pain will go away when the red marks grow out or not. It hurts to press anything too hard with my fingertips, and using my fingernails is almost out of the question. Typing is a little uncomfortable, but still do-able. Other tasks are...getting difficult.

This could be neuropathy, a possible side effect of many chemo regimens. I do not have any tingling, though, just pain. If it is a side effect of my medications, I wonder what to do about it. Will I switch medications? (And here I was all happy about continuing on Abraxane.) Is there something I could take for the fingertip pain? If I switch to something else, is it reversible? Will it just go away on its own?

It's weird and irritating.

Labels: Abraxane, chemo, fingernails, neuropathy

2 comments

My CT scan results came back showing improvement. Since there was still some concern about why my liver counts were off, I had to wait until the blood test results were back on Tuesday before going to the infusion area.

It took hours.

It was possible that the Abraxane had ceased to be effective or was causing the liver problems, in which case Dr. Hayes mentioned having me participate in a research study that involves two chemo medications taken orally.

Whereas I wouldn't mind being able to take pills, the prospect of having to move on to the next chemotherapy drug did not make me happy. There's a limited number of chemo drugs available, and I have to hope that production of new effective medications (to which I am not allergic) outpaces my disease.

Anyway, the numbers came down so I went to go be infused as normal.

I did discuss with Lita the possibility of reducing my dosage of decadron, but in the mean time am using Prescriptives foundation to at least look better. I have concluded that the acne creams are not doing squat and will need to have words with the dermatologist about it on Tuesday. Monday I am going to have words with the orthodontist, so hopefully soon I will be able to floss and eat corn on the cob.

Labels: Abraxane, blood tests, braces, chemo, CT scan, Decadron, dermatologist, Dr. Hayes, infusion, Lita, liver

1 comments

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

2 comments

The second infusion in this round of treatment did not result in dire gastrointestinal symptoms lasting for days. I suspected this would be the case when Brian started exhibiting the same symptoms I'd had (he's never been squeamish about taking care of me and has not ever shown signs of "sympathy pains") later in the week.

I felt a little bad about it--I didn't want to rejoice that he was feeling so crummy, but on the other hand,

w00t! Influenza! so much for my flu shot

Thank all that is holy. I feel fine today.

There is no word yet on what to do about my braces. I did have an orthodontic appointment Monday, at which I shared my concern about my teeth on Zometa with the orthodontist. He has not seen me very long (my original orthodontist moved to California), and has no basis for comparison regarding the movement of my teeth. He's not personally familiar with Zometa, so I gave him Lita's contact information. She's not personally familiar with braces. I don't know that they are going to be able to come to any conclusions and suspect it will be a matter of observation and slow decision-making. I am to return in four weeks and have "superchains" on my teeth right now rather than the usual "powerchains." I wonder if there is such a thing as "superdooperchains" or not. I might need them.

Labels: braces, Brian, chemo, Lita

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It was nice while it lasted.

I was the first patient Dr. Hayes and Lita tried to treat with just Avastin and Zometa, in the hope that my disease is stable enough to treat without my having to undergo chemotherapy. As mentioned in a previous post, the blood test results from two weeks ago indicated that there could be some tumor activity: one of the markers remained the same, but the other blipped up.

So I went in for my bone scan and CT scan last week, which is always a joy. I was not able to eat during the day because of my evening scan, and by the time I got home I was ravenous and more than a little insane with low-blood-sugar-induced anger. I was angry about being stuck at the hospital with nothing to do for three and a half hours because I wouldn't have had time to get home and back. I was angry about not being able to eat. I was angry about the fact that barium even exists at all and that they can't inject the contrast dye into my port (Lita says now there's a new kind called a "superport" that they can use for injecting the dye...I may consider asking to get mine replaced). I was angry about slow traffic, at the person who honked at me for not turning quickly enough into the Wendy's parking lot, at the slowness of the drive-thru. I was angry at Brian for keeping me company while eating. I was once again angry at barium when it decided to go on its voyage to porcelain heaven--all at once. I was angry at pretty much anything it occurred to me to think of or notice.

I got my results today.

The Good News

My bones appear completely stable. There was no progression of disease in my hip/spine/ribs, and Lita is not at all worried about undue risk of fracture.

What a difference a year makes.

The Bad News

The bad news is that the disease in my liver does show progression, and as of today, both tumor markers were up (the one which had gotten down to 16-point-something is now about 200). I resumed the Abraxane today and have every expectation that those markers will go down again to near-normal levels. If not, we lather, rinse, repeat with some other drug.

Alas, this also does mean I have to resume enduring Neupogen shots. :(

The Freaky News

Within the last year, they've started hearing about some kind of weird bone problem that happens with people on Zometa--in rare cases, part of the jawbone (and only the jawbone) actually dies, which can lead to exposed bone in the mouth.

Yuck.

They have not seen this before because in the past, breast cancer patients with stage IV disease didn't last very long and Zometa didn't exist. Now it does, and there are a lot more people living significantly longer. Lita stressed that this side-effect is rare, but I get a tightness in my chest when I hear people telling me about medical conditions I have a very small chance of experiencing. I've played those odds--several times--and keep on beating 'em. I have been instructed to make my orthodontist aware of the risk so that they can check for my jaw health at my regular appointments.

Great. All this money for braces only to have my lower jaw corrode away or fall off or whatever. That's just swell.

Labels: Abraxane, Avastin, barium, blood tests, bone scan, Brian, chemo, CT scan, Dr. Hayes, hospital, Lita, liver, metastasis, Neupogen, tumor marker, Zometa

2 comments

Lita called the other day with my test results: my tumor markers appear to be almost identical to last time. I have a couple of liver test results that are wonky, but overall things are great. This means for at least one more month, I will be able to remain chemo-free.

\o/

Labels: blood tests, chemo, Lita, liver, tumor marker

1 comments

Today I started my holiday from Abraxane. I will continue with Zometa and Avastin, but the idea is that I'm currently doing so well that taking a break from chemo will do no harm. This will also enable everybody to see if just the Zometa and Avastin combination will keep things at bay.

If not (I am monitored with blood tests, and Dr. Hayes will order scans if warranted), I will obviously continue with Abraxane. However, eventually I will develop tingling and numbness in my extremities, and the drug may stop working for me. At which point there are other drugs to choose from, but I'm not sad about delaying the inevitable.

I'm also not sad to not spend the later part of this week--the Thanksgiving Holiday--feeling icky and like I have the flu. Woohoo!

I am a little bit sad that my braces were adjusted yesterday. I feel the pain. I hope my teef recover by Thursday.

Labels: Abraxane, Avastin, braces, chemo, Dr. Hayes, Zometa

2 comments

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

3 comments

At my appointment this past Wednesday, Lita (my oncologist's nurse practitioner) told me that she had spoken at a conference in Chicago, where she mentioned me as an example of how well newer cancer treatments can work. I'm a case study!

Of course my name was not used, to protect my identity.

Dr. Hayes mentioned that he had recently had a conversation with Dr. Smith (the attending physician for the floor of the hospital where I spent the first two weeks of December), who was not at all certain that I'd turn out very well. "Oh, that poor lady," Dr. Smith took a dim view. I can imagine why he thought my case was dire: I was very, very ill in December, and tended to immediately vomit whenever he or his troupe of doctorlets came to visit me. I had what Lita describes as "the worst case of gastritis" she had ever seen, had a hip that broke as a result of metastatic disease, was undergoing radiation, and couldn't be moved without copious amounts of morphine.

What a very sad sack I was.

Well, things have turned around completely. Last weekend Brian and I went to visit my relatives in Cleveland, and not only was I able to stay on Aunt Barb's second floor (thanks for the hospitality, Aunt Barb), but I was able to show off my new, walker-free self to Grandma. "This is what physical therapy can do," I tried to tell her. Grandma is 93 and doesn't want to go to physical therapy. I can't say I blame her, but she does have exercises she could be doing at home. (Also, Grandma needs to wear her compression stockings. I highly recommend the toeless ones by Juzo...they included a little paper slipper that made them very easy for Brian to put them on my feet, after being shown how by the occupational therapist.) I was a little tired after walking back to the car from Jacob's Field on Friday, and walking around the Cleveland Zoo on Saturday definitely made me sore, but it was more the result of lots of walking after long inactivity, and nothing like the hip pain I experienced last year before being properly diagnosed.

Dr. Hayes also again mentioned the idea of taking a break from chemotherapy. I am more disposed to the idea this time. I will be undergoing more rounds of chemo and then in November will be re-scanned. If the downward trend on my lab results continues, and the tumors in my liver shrink further (to non-scary sizes: the largest is still around 4 centimeters), then I will be taken off Abraxane for as long as things appear to be ok. I will continue receiving Avastin and Zometa, which do not have the kind of side effects that chemotherapy does. I'm disappointed to have to continue going for infusions, but being able to grow my hair and stop getting Neupogen shots (which I've been weaseling out of having Brian give me) will be very nice. Lita called and left the latest lab results: the tumor marker which had gone down to 16.1 is now 15. The one which had gone down to 65 is now 45. (I will try to amend this with more accurate information when I get home.)

Now that things are going so well and that I am back at work full time, I've had a human resources snafu thrust upon me. I am very lucky in that my benefits allow me a very large number of "extended sick leave" hours at full pay. Unfortunately, I have only 20 of those hours remaining. I can use extended sick leave hours at half pay (which only contributes half to my retirement and benefits), or if I don't use extended sick leave hours at all for thirty days, they will be renewed to 1056 hours available.

However, those 1056 hours cannot be used for the same occurrence of an illness. Basically this means that in order to use the renewed extended sick leave hours, I have to develop some OTHER catastrophic medical situation aside from the chronic disease which for which I will be undergoing treatment for the rest of my life.

I could use my fifteen days of short term sick leave for my infusion appointments (these tend to take six hours or more) and other doctor's appointments. However, since I get infused roughly three times a month, within less than five months my sick leave will be gone for the year. Also, due to the library's interpretation of the university's Standard Practice Guide, taking three sick days per month could, in three months' time, give my supervisor (who, mercifully, is not interested in punative tracking of my schedule) grounds to write me up and fire me.

I could use my vacation time--which did not accrue while I was on extended sick leave--for my appointments, however I get only two vacation days per month and it hardly seems fair to deny me my vacation time in entirety because of a medical condition.

I could take time off without pay, which isn't appealing for the same reasons taking half-pay extended sick leave isn't a great option. Or I could rework my schedule to work longer hours on the other days of the week that I am not receiving medications intraveinously. Sure, that makes sense--let's have somebody on chemotherapy working longer hours to make up for it.

This is all patently ridiculous. I'm not a malingerer; I work hard and contribute positively to the library. I feel like I'm being punished for something utterly out of my control: I didn't choose to be afflicted by a chronic condition, and if I could magically stop going to as many appointments as I do, I'd be thrilled. However, there's nothing I can do about it, and I feel like the university's policy is designed to keep them from having to pay for somebody with a chronic illness.

Grounds for dispute under the Americans with Disabilities Act? I don't know.

Labels: Abraxane, Aunt Barb, Avastin, Brian, chemo, Cleveland, doctorlets, Dr. Hayes, Grandma, hip, Lita, liver, morphine, nausea, Neupogen, physical therapy, radiation, sick days, Zometa

2 comments

(Skip the vacation filler and proceed directly to the payoff.)

I opted, instead, to purchase a paint 'n' peel window decal kit, which consists of two black tubes of outline paint, and an assortment of translucent fill-in colors. The kit allows you to make your own "stained glass" style window decorations, which can be reused, as long as you store them on plastic sheets or keep them from accidentally folding up as they are impossible to unfold. (Alas, my poor butterfly decal decided to curl up and return to beeing a cocoon.)

The Toy Box is the best toy store I've ever been to. Each year on my vacation to Martha's Vineyard with my friend and college roommate Sarah and her roommate (and also my friend) Danielle, we make a point of stoping at this store to see what they have and possibly buy cool stuff. Last year I got a pirate hat and some hair beads. Sadly, I can't currently use the hair beads, but the pirate hat is good for any occasion, ARRRRR!

Around every corner there are neat and creative things. The rooms are irregularly shaped, the store is lacking in aisles, the passageways are cramped and overflowing, but everywhere there is something just begging to be picked up and tried out. Many of the doodads for sale have open samples that can be whirled, squeezed, prodded, flung, and generally examined. This store sells Breyer Horses, which is my personal litmus test for what makes a "good" toy store. It also has a fantastic costume collection, which makes me sad that I'm too big to fit the ballerina outfits and that it is no longer socially acceptable for me to go trick-or-treating.

There are all manner of games, including really cool ones that are unavailable at most chain toy stores. The stuffed animal selection was small, but mighty. There was this really great collection of woodland creatures that came in varying sizes and had plush stumps you could purchase to store your happy animals in. There were three different sizes of stumps and a beaver home, for each different size of stuffed animal--including a tiny stump with one hole and a carrying strap so you can carry around your favorite teeny critter. There was a three-hole stump so that three of your buddies could be carried at once together. The larger, vertical stumps did not have carrying straps that I could see, but for all I know they had backpack straps, or something. Too cute.

Anyway, just around the corner from those (and the wee hand-knitted finger puppets) were the craft supplies. I decided we needed to invest in some sort of craft to do, and was sorely tempted by the shrinkydink book. It had pages of blank shrinkydink medium so that you could trace patterns or design your own. Sadly, it did not come with suitable colored pencils or markers, and I didn't really want to buy colored pencils when I've got several hundred colored pencils at home.

Then I spotted the window peel-and-stick decal book, which fascinated me. I opted for a replacement kit, which included instructions, and the three of us proceeded to make colorful stained-glasslike window decals including a couple of snakes (inspired by the rollicking, if not exactly good, Snakes on a Plane), a bunch of grapes, a mermaid, and more.

I also had fun on my vacation going to the beach, visiting stores, going to Chicama Vineyards for a tour, eating mondo sandwiches from Humphreys, and generally tooling around the island in Sarah's very intrepid Hyundai. I got very sunburned at Longpoint beach despite repeated applications of sunscreen and learned that any number of my medications make me more susceptible to sunburn and that I probably should have kept my legs covered. I'm still itchy.

When I got home from the airport, Brian had a stuffed pug waiting for me in the car, and anniversary balloons and a card in celebration of our six-month anniversary. In a way I can't believe it's been that long, although in some ways it seems like so much has happened in the past year that we've packed several years in the space of one.

(The Payoff.)

I had an appointment with Dr. Hayes the Tuesday after I got back . These appointments have been very early, but I opt not to go to work on those days since I generally feel wiped out by the infusion (and probably also by getting up so damn early). Lita gave me the results of the CT and Bone scans, which Dr. Hayes reiterated when he came into the room. Both showed no new metastatic lesions, woohoo! The bone scan showed that there were improvements to the lower spine, a rear portion of one of the lower ribs (it did not say whether it was right or left), and the illiac joint, presumably in my right hip which was where the trouble all began. The CT scan showed that the lungs are improving and that the tumors in my liver (which, oddly, has continued to function normally this whole time) have shrunk to half the size. I was never told that the largest of the tumors had reached seven centimeters; Lita and Dr. Hayes only reassured me that the liver was functioning completely normally. Now that the largest of the tumors is down to three centimeters, I guess it's ok to let me know.

Brian knew about the alarming tumor size, but concealed it from me as well. This may explain some of his panic at my condition. I'm not sure how I feel about having medical things purposefully concealed from me, but I guess dwelling on the tumor sizes in an organ that's doing otherwise just fine is somewhat worrying about nothing. Livers are weird and very resilient, luckily for me.

Dr. Hayes then mentioned that if things continue to go the way they are going, I might want to consider taking a break from the chemotherapy. He said that some people who are doing relatively well and tolerating the treatments choose to stay on it. Those who choose to take a break from the chemo may have a reoccurrence of tumor activity, but when they start up the therapy again, this usually clears up quickly. Statistically there is no difference in the overall prognosis of both groups. For those few people who do not respond well when going back onto the chemotherapy, it's usually because they were starting to get worse before going on the break. Naturally Dr. Hayes does what he can to avoid this. In any case, I potentially have the choice before me and I'm not sure what to do.

Taking a "break" is frightening. I'm terrified more than anything else of getting brain mets, and what's to stop it from happening if I'm not being treated? Also, the last time I was on a break--granted, it was a year and a half long and I wasn't being closely monitored during that time--things went very badly for me and I ended up in a hospital bed with a badly fractured pelvis and one of the worst cases of gastritis Lita says she has ever seen.

On the other hand, I am sick and tired of feeling sick and tired. It often occurs to me that I will get to think about cancer every day for the rest of my life, which is not a happy thought. Maybe it would be nice to skip the infusions for now and just keep up with regular blood tests. Maybe I would feel less tired. Maybe the hot flashes would subside. Maybe I can spend some time growing my hair. (There seem to be a higher proportion of little stubbly greys on my head than there have ever been before, particularly on the left side, for some reason...I used to have only one or two. I don't know if growing my hair will actually make me happy; it might just make me feel old.)

Anyway, the next day I looked at the printed reports which included not only what Lita and Dr. Hayes had already gone through, but also had the latest blood test results. These include all kinds of baffling numbers about my blood chemistry, but also indicate the results of two specific tests of tumor markers in my blood. I don't have the actual reports in front of me, but when I saw the numbers and compared them to my last cumulative report, I had to rub my eyes and wonder if the decimal point was in the wrong place. On one of the tests I have gone from a high of 255 (in May, I think) to roughly around 150 for the previous test, and then the latest test shows the number 16.5. Normal is either 3 for non-smokers, or 5 for smokers.

I am amazed. I seem to be doing unbelievably well. My tumor counts are down, and my actual tumors are shrinking.

I didn't need to buy shrinkydinks after all because I'm carrying some around with me everywhere I go, albeit icky ones that nobody really wants to look at.

Labels: bone scan, Brian, chemo, CT scan, Dr. Hayes, hair, hip, hot flash, Lita, liver, lungs, Martha's Vineyard, pug, tired, toys, vacation

2 comments

Aside from the fact that the ball size is totally different and that I completely suck at bowling (the last time I bowled I received a score of 19, due only to the scorekeeper's accidentally counting three pins twice), whereas I have been known to once in a while eke out a victory in my annual Martha's Vineyard mini-golf game, the scoring is exactly the opposite.

In bowling, you want your score to be as high as possible with as many strikes as you can get. With mini-golf, you want your score to be low as it can be.

I have printouts from the hospital showing results of various blood tests--which they have to do before determining whether I'm healthy enough to receive this week's dose of chemotherapy--and the array of things monitored is dizzying. There are white blood cell counts, various chemical counts, red blood cell counts, tumor antigen counts, things related to liver function, and I have one sheet listing I-don't-even-know-what.

The two major numbers that I've been paying attention to are the white blood cell count and the tumor antigen count. You want to have a high enough white blood cell count to be able to fight off infection, otherwise they will not administer the chemotherapy because it is just too risky. If you can't bowl, they won't let you in the league. So Brian has been administering subcutaneous Neupogen shots at home (which is hysterically funny for anyone who knows how much I just love needles) the four days after my chemo treatment. So far it's been working. The tumor marker count is like your minigolf score: the lower, the better. On my sheet, it started out around 55 in November and reached a high of over 200 before starting to go down.

Anyway, Lita called the other day and told Brian we are to celebrate because the numbers are all going in the direction they should be (also, the test results show that my liver function is almost back to normal, but that doesn't fit into my stupid analogy). I don't know how the numbers compare right now to what is on the printouts, because Brian couldn't find the sheets and didn't write down what Lita told him.

I am cautiously optimistic about the tumor counts. I'm not sure it will ever be possible to make it under par, but lowering my score at all is a good thing.

Labels: blood tests, Brian, chemo, Lita, liver, Neupogen, tumor antigen, tumor marker, white blood cell

1 comments

From Law.com: Employment Case Puts Johns Hopkins Under the Microscope

"Dr. Young Ko believes that she has found a cure for cancer.

Using an inexpensive drug named 3-bromopyruvate, the Johns Hopkins University researcher was able to eliminate advanced liver cancer in lab animals. Earlier this year, after her work was profiled by the Baltimore Sun, dozens of cancer patients and their families contacted the medical school to ask when human trials would begin.

Not any time soon, it would seem. Ko's research is now at the center of a bitter employment dispute between the researcher and the university. " ...read more

Despite the political infighting at Johns Hopkins and the red tape, Dr. Ko has a grant from the Susan G. Komen Foundation and is going to be studying the effects of the drug 3-bromopyruvate (3-BrPA) on breast cancer and metastatic cancers.

She and one of my best friends (and bridesmaid) Wendy sent me a sequinned shower curtain as a wedding present, and I am so tardy on my thank you notes that I have yet to thank them.

Thank you, Dr. Ko. Thank you very much for the shower curtain and for the work that you are doing which has actual applications instead of being theoretical. Thank you for working on a way of combating tumors that seems to be non-toxic. Chemotherapy is a crap-shoot and is extremely unpleasant. I'd love to be involved in human trials--I'm sure there are many who would be. I hope the politics of your situation do not get you down and that you are able to progress with your work. You have my heartfelt admiration and gratitude.

More on this:

• 3-Bromopyruvate Completely Eradicates Advanced Cancers in Come[sic] Rats


• Posts from The Cancer Forums - includes a post from a former colleague of Dr. Ko's explaining how the development of new treatments is stymied by a completely broken pharmaceutical system

Labels: 3-bromopyruvate, chemo, Dr. Young Ko, Johns Hopkins, pharmaceutical companies, shower curtain, Susan G. Komen, trials, Wendy

2 comments

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

1 comments

So I opted for short hair. Brian and I went to a small hair styling place by Holiday Market and we both got haircuts. Even with the amount of hair that I've pulled out of my hairbrush in the last few days I was amazed at the amount of hair left on the floor. The woman cutting my hair was very sympathetic and avoided too much pulling or using the blow drier. The woman cutting Brian's hair insisted that according to some self-help guru, breast cancer can be cured with linseed oil.

Really, is that all it takes? Then what am I doing with this chemo nonsense?

Labels: Brian, chemo, hair

2 comments

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

2 comments

My new chemo drug did not cause me to turn into a red, wheezing beet. I did not have trouble sucking air into my passageways, and the whole thing only took an hour. It was 1/2 hour for the infusion and then 1/2 hour to clear the line and get things in order. The premeds were in pill form, so those took pretty much no time at all.

Of course, I can't be sure that I won't go into anaphylactic shock the next time I receive this drug--maybe I'm building up antibodies and my system will go nuts the next time it encounters this alien substance--but I doubt it. This drug is delivered in a base of albumen, and I have never had a sensitivity to eggs that I know of. The nurses all remembered me from the other day. I also got a visit from Lita, who said, "Here's our problem child!" I was very popular.

I guess for now no more hugging or snorting trees. Oh well.

Labels: Abraxane, chemo, infusion, Lita

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Once upon a time...

I recall encountering the story of Snow White (no relation to the nice lady with the 7 vertically challenged gentlemen) and Rose Red in my Andrew Lang fairy tale book when I was a child. I don't actually recall the plot of the story--I seldom went through it, due to my outrage at having a story with a character named Snow White who had nothing whatsoever to do with poison apples and dwarves. I don't know how the story goes, but I do know that the description of this particular Snow White is familiar: she has skin as white as snow, hair as black as coal, and lips as red as blood. I used to identify with this; my hair is very dark and I tend towards the pale end of the spectrum (fishbelly white). I'm not sure whether Rose Red matches her own name. It can't be easy to be red all the time. Maybe she was sunburned...they didn't really have sunscreen back in those days.

Today I got to be Snow White and Rose Red in the same day. I went for my third chemo treatment, and when they started it, I once again had trouble breathing and my face turned the color of a glowing traffic light indicating that you are moving through the intersection illegally.

It turns out that Taxol uses as its base a substance made from tree bark, and I do know that I am highly allergic to tree pollen (this time of year usually involves lots of nasal congestion and very itchy eyes, to which I say, "man, I'm glad I don't wear contacts"). As soon as I was able to get the nurse's attention, there was a fleet of nurses and the on-call doctor fluttering around taking my vitals, asking if I was ok, listening to my chest, and hooking up saline. They had given me a pre-infusion of benadryl to counterract the effect of the taxol, and ended up giving me even more. One of the nurses was surprised they weren't giving me this other chemo drug which has albumen as its base and fewer side-effects than taxol. "They want to be sure you've tried everything else first," one of the nurses said.

Gotcha. My insurance company did not want to fill my prescription for nexium unless I could say I have tried other antacids first, like tums, tagamet, prilosec otc, etc. Since I am not, strictly speaking, taking nexium as an antacid and rather am taking it to help control my nausea and vomiting, the hospital pretty aggressively negotiated for me.

After they gave me oxygen and I was feeling better, although woozy from all the antihistamines, they let me know that I was approved for this other chemo drug and would need to come back tomorrow to get that instead.

Another appointment is inconvenient, but at least I won't (hopefully) have breathing problems with this new drug.

Who knew a tree allergy could be so problematic?

Labels: allergy, chemo, infusion, insurance, nausea, Taxol

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I've been here before. I've been to a second dose of chemotherapy. The last time I had a second dose of chemotherapy I didn't suddenly have trouble breathing, have to have the treatment temporarily stopped, be given oxygen, and then have the treatment team paged.

Apparently Taxol can do that to you. I had some kind of reaction (which they assured me was not uncommon) and that I'd probably be fine and never have that reaction again. they gave me some benadryl to be on the safe side. It was very weird; it felt like my lungs just weren't working and my face turned beet red. I certainly hope it doesn't happen again; it delayed things and I ended up not getting out of there until after 6 p.m. I don't know why it is all of my appointments have to take so long.

The other day at Dr. Rodriguez's office, a patient showed up with a very demanding parent/guardian who insisted that the patient be seen despite not being in the system as having an appointment. We could hear the entire conversation through the walls, and I think his being there caused something of an uproar, disrupted the schedule, and I ended up being the last patient out of the office. Why? Why me? Do I need to be a squeakier wheel? Should I complain more? Should I loftily proclaim I will leave or threaten legal action if I'm not seen now? Those options aren't appealing; I think most people are just trying to do their jobs and don't want to be harangued. It's just that I'm getting a little tired of being passed over and having things run later than they ought.

My dose of 1 chemotherapy drug actually also involves a drug designed to inhibit new blood vessel growth (this is something tumors like to do...they nest somewhere and set up their own blood supply...little f#$%ers), which naturally have to be delivered separately. Then of course, to help with nausea, I am given some anti-nausea meds beforehand, two in pill form and one intraveinously, which delays the chemo. Then of course there are bags of saline to "flush" and since I had an episode, benadryl and more saline. Everything adds up to me sitting there forever. Blargh. I don't know what Brian did while I was sleeping. My mom had a book with her before she left for her yoga class.

Then of course the ride is long to get home. They are going to start offering infusions at the Canton health center, which will be much more convenient (I hope).

Labels: allergy, Avastin, Brian, chemo, Dr. Rodriguez, infusion, mom, nausea, Taxol

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After talking with Lita this past Friday, I feel slightly more at ease. Brian called her out of concern, and she gave me a call to find out how I was doing. Don't get me wrong--I'm still unhappy with having to be on chemotherapy again when I had hoped an alternative might work, and I have been rather weepy about my situation in general, but at least I'm no longer climbing the walls and have been able to sleep.

She reminded me that the chemo was something they had actually wanted to start with, but I was so sick in November when I first came to see Dr. Hayes that I wouldn't have been able to tolerate it. So they started hormone therapy to buy some time and did the radiation. Now that I'm stronger and feeling well, the time is good. The hope is to beat back the tumors and the chemo (combined with another drug that inhibits the growth of new blood vessels, which tumors tend to create to feed themselves) has the potential to shrink things so that they are undetectable. Of course there's no way to know if this will happen--it might not, in which case they'll try something else--but at least there's a chance. She doesn't expect my immune system to be compromised, and so far I haven't felt any nausea or other symptoms aside from some sinus pain and general digestive unrest.

It also occurred to me that I hadn't changed my fentanyl patch in something like four or five days. Lita made me promise to change it immediately--I was probably undergoing withdrawal, which can make people extremely agitated and restless. So I did, and sure enough, I feel more calm and have been able to rest. It's official: I'm hooked on little narcotic patches. I remember trying to give up caffeine one year for lent. I had terrible withdrawal headaches, but this feeling was so much worse.

Labels: Brian, chemo, Dr. Hayes, fentanyl, Lita

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My day lasted considerably longer than I wanted to and took a radically unexpected turn. I got to the Radiology department at 9:06 a.m. (only six minutes late), and got prepared to have a port installed to make the monthly infusions more bearable. I had anxiety about the port placement. Where would it be? Would it be very painful and awful? What would it be like afterwards? I was assured that the procedure would go smoothly, that people tend to not suffer much discomfort during the placement, and that I could discuss where it would be placed with the person doing the procedure and things would turn out ok.

I actually didn't feel much of the procedure at all. After giving me the sedative, the people in the room kept asking me questions about where I lived, and did I know about Holiday Market, and was I near the new Ikea? I remember that the local anesthetic shots stung quite a bit, and then I don't remember anything else until being wheeled into recovery. This was several hours later than expected, since there were two people who needed emergency procedures before I was even able to go in. So my mom had lunch while I was out of commission, and I had to get dressed and get to my other appointments. There was a wheelchair for me. I got in the wheelchair (which got us special privileges at Wendy's in the hospital) and had my first food of the day: nuggets and a small frosty. I looked at the tiny cup dolefully.

"If I had known the small was going to be that small, I would have opted for a medium."

Then I went to make my next appointment; the infusion that was scheduled at 2. I had totally missed my appointment with Dr. Hayes, but could make this one. As I was getting weighed in, I heard people in the waiting area calling a name I'm hardly used to: "Janet Elkins? Janet ELkins! Janet ELKINS?" I identified myself, and it turns out it was highly important to see the doctor before going in to have the infusion. There was a delay there as the four people at the check in desk neatly failed to help the line of people waiting and depended instead on the trainee being helped to do it. Every conversational remark she made to somebody ahead of me I begrudged. How dare she take time to trade pleasantries when there are people waiting? Grrrr...

Finally I got in to the docor's office and waited. And waited. And waited. My mom called Brian, who then took over the job of waiting with me. And we waited. Finally, Lita came in and had news to report which made it clear why seeing the doctor before going in to the infusion would be important. "While it certainly did at first," she said, "it looks like for whatever reason the hormonal treatment isn't working anymore." We would have to switch to another therapy. So today I started chemotherapy for the second time, which I have already prayed in this blog I would never have to do again, god willing.

God is apparently not very willing.

I finally got home at 10 p.m. Brian is eating ice cream. I'm typing in my blog with a very bruised arm covered with green...antiseptic, I think it is. My face is puffy from something. A side effect of the infusions? I didn't start weeping until after my left eye was already partially swollen shut so I don't know what's going on there.

My day was very long and this was an unpleasant surprise.

Labels: Brian, chemo, Dr. Hayes, hormone therapy, infusion, Lita, mom, port, surgery

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I went to see Dr. Coello today with my mom, who insisted his hands weren't as cold as I claimed they were, however she didn't have them prodding her lymph nodes. I had told him over the phone that I was interested in seeking care from the University of Michigan Health System, and he agreed it would be a good idea, particularly since research institutions like U of M or Wayne State can offer treatments that regular oncologists don't.

He said a good option for me might be a bone marrow transplant. Chemotherapy works by destroying fast-growing cells, since cancer cells are among those that grow the fastest. However, so do cells in the hair follicles, stomach lining, and bone marrow. If the treatment is too severe, it can kill off a patient's bone marrow, which is generally not a good thing, since it is needed to produce new blood cells. So what they can do is harvest the patient's bone marrow, do a more powerful chemo treatment than they'd be able to do otherwise, and then reinject the harvested marrow after the chemo has been completed.

He said I would be a good candidate for this procedure (since I'm young and generally healthy, except for, you know, having cancer) and he would contact the U of M Cancer Center immediately to send them his records and impress upon them how things need to move quickly. I hope to be able to see someone next week. Wherever I go, Dr. Coello said that chemo treatments would most likely relieve my pain in as little as 2 to 3 weeks. I am very much looking forward to that, although in the meantime I did ask for a form to get a handicapped sticker from the Secretary of State's office, and my library director and associate director arranged a handicapped permit for my car that will allow me to park by the library loading dock. I'm officially differently-abled! I'm handicapable!

I will be slightly embarrassed to tell the oncologist assigned to me by my new primary care office that I will actually be heading elsewhere, but if he's professional, he won't mind my seeking care that I'm comfortable with.

What I wonder is, what do they do with the bone marrow once they've sucked it out and before they squirt it back it? Is it kept in jiggling piles on petri dishes? Do they load it into tubes to be extruded back into place? Do they use little tiny turkey basters to suck it up, freeze it, then let it thaw and squeeze it back in? Do they ever get the samples mixed up and could I end up with the bone marrow of an NBA draft pick? Will it improve my game? Medical science contains so many mysteries.

Labels: bone marrow transplant, chemo, Dr. Coello, handicapped, hip, University of Michigan Cancer Center

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