Wednesday, June 11, 2008

Having Solved the "Skullet" Problem...

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

Janet, rockin' the pink and green mohawk

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!

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Wednesday, November 07, 2007

Gravy, Man

Check out the new November décor for Janet's Blog.

I wasn't sure I was going to keep up the holiday themes, but my dad suggested that I should do it. He said it would be like going to visit Grandma's house.

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Tuesday, October 23, 2007

May Have Played the Cancer Card

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.

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Friday, June 15, 2007

Sleep: the Dream That Eludes

I had a nasty cold last week (which now Brian seems to be getting). It has progressed to a nagging, unproductive cough, robbing me of sleep and sanity. I sound awful, and not just because of the retainers. It is an effort to squeeze sound out of my throat. I showed up for work yesterday because I had four meetings I really didn't think I could skip; people there keep looking at me funny.

I was coughing at infusion on Tuesday, so the nurses had me talk to a PA. The PA asked me a series of questions about my cough and thought it might be a "reactive airway" thing, and asked if I'd ever had asthma. She set me up with an appointment with my general practitioner for Wednesday evening--I went to the doctor and wrote down as my reason for visit: "horrible, sleep-depriving cough." She gave me a boatload of medications (prednisone, an antibiotic, special cough medicine with a narcotic) and promised I would be able to sleep that night. The codeine made me loopy, I saw weird stuff when I closed my eyes, but I could not stop coughing and my brain would not shut off.

I'm still supposed to go for a chest ex-ray, even though everyone agrees my lungs sound ok. I just can't breathe without hacking. I am wary of trying to drive anywhere, even to get the chest ex-ray. I know that I am impaired.

I can't even think of a clever way to conclude this post. It looks like I will not be traveling to Cleveland this weekend (it would have worked out great...seeing my dad on Father's Day...quel bummer). I am going to try to drag my carcass to Race for the Cure Saturday. Maybe I should call and beg the doctor for either some kind of inhaler or a horse tranquilizer.

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Tuesday, April 10, 2007

2.5(Barium) + [1(stab) + contrast] + DQ = (S1x - S2y)/washcloth

It only took one poke for the I.V. to go in yesterday; I was shocked.

Seriously, that never happens. Often even when the I.V. does go in, the vein completely collapses when they try to get a "return". I have no idea what that means, because I can't look at it sticking out of my hand/arm/wherever and usually have my eyes clenched shut when they are doing something involving pointy stabby things.

I do not know when I will have the results; typically Lita gives them to me at the next appointment. So possibly this means next Tuesday, at which point I will find out if my treatment regimen will be completely overhauled. I will find out if my liver is twice the size it's supposed to be (presumably not; one ought to be able to palpate such a thing).

Yesterday after my appointment, I was very cold. The Dairy Queen Blizzard probably didn't help, but we had to stop at Blockbuster on the way home and there was a DQ right there. After Brian left for class, I got even more unbelievably cold. I sat in the living room with the hood on my sweater up, a down throw on my legs, a chenille blanket wrapped around my shoulders. I tried to knit, but when my hands started shaking, I decided to go to bed. So I went to bed with all my layers on, my hood up, and actually pulled the comforter up, which I never do because I'm always too hot at night (thanks, premature menopause). The only part of my body which was warm was my face, so I warmed my hands on it, which will probably do nothing whatsoever to help my acne.

After sleeping a few hours, I woke up burning and started pulling things off. I also started hallucinating and had this very bizarre and abstract idea that I was breathing in different units of a three-dimensional shape than what one normally breathes in, and that without being able to breathe out the non-normal shape, it would build up in my lungs, overwhelm the other shape, and I'd never cool down.

Yes, I hallucinate geometry. Having mathematician parents was destined to wreak havoc with my psyche eventually.

A cold washcloth turned out to be the antidote (to feeling hot, if not to math).

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Sunday, February 26, 2006

Words Just Don't Suffice: allow me instead to say, "wheeeee!"

Mrs. and Mr. Brian ElkinsI am extremely tired after the goings-on yesterday. I love more people and told more people I'd never met before how glad I was to see them, and it was true.

I was very happy to have help getting dressed and would like to thank the bridesmaids for being there. I think everybody looked great in their impractical dresses requiring complicated underwear, and think that anybody who agrees to such a duty deserves every amount of kudo possible. I'd like to thank Maria, particularly for marshalling people and getting everyone there in good order and for holding the bouquet at a crucial moment in the ceremony. I'd like to thank Wendy for helping me with the scary elevator; I was afraid the metal accordion-style door thing was going to crush her. I'd like to thank Melissa for being the photographer and helping to organize the group pictures. And I'd like to thank Sarah, who went on with the show despite not being able to attend the rehearsal and for being my witness (sorry I didn't tell you about this blog sooner).

I'd also like to thank the flower girl, Olivia, for doing a great job walking down the aisle, and who provided no small amount of entertainment value afterwards. I hope you like your flower-wreath headpiece.

It's Brian's job to thank the groomsmen, but I'd like to thank them too, especially my brother John, who doesn't know Brian very well but who agreed to participate. You are the best big brother anyone could ever ask for.

I'd like to thank Brian's brother Todd for delivering a very lovely, and mercifully brief ceremony, despite making me cry with the "in sickness and in health" part. If I could go back in time and change anything, I'd have stuffed a handkerchief somewhere about my person.

Thank you, Dad, for walking me down the aisle. I did not imagine I would ever have occasion to do such a thing, and am extremely grateful that you could be here to walk with me.

The table favors were perfect and included two pieces of Brian's favorite candy, Ferrero Rochet, and a small box of my favorite candy, the best candy in the world, hee hee. Brian's mom put them together, and I'd like to thank her not only for making sure they were sweet-tasting, but that they looked very sweet as well.

Finally, I'd like to thank my mom for arranging the whole event with perhaps less input from me than was helpful. I confess disinterest in invitation ink color and I am fearful of calling places for prices. Much of the planning went on while I was hospitalized, and the thought of planning tended to shoot my anxiety level to nausea-indusing heights. Through events yesterday my mom remained calm. I think what touched me most, however, is that when I got home from the rehearsal the other night, I came home and found my walker decorated with shiny irridescent fabric and beaded ribbon. It was funny and touching and kind of puts me in mind of what I must have been like in my own dress--I'm a little bit gimpy and broken, but anything can look pretty when dressed up for a wedding.

Also, the mashed potato bar and baby roast beef sandwiches at the reception were a big hit; I believe my enthusiasm regarding the food was vindicated. (Whenever I went on and got excited about the mashed potato bar that was going to be at the reception--you got your choice of regular or sweet potato with whatever fixins' you wanted--people would tell me, "uh, ok.".)

The cutting of the cake did not involve smashing pastry into any bodily orifices other than the mouth. I'm sure it was an accident that some icing fell into my extremely prominent cleavage.

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Sunday, February 05, 2006

Lesson Learned on 6A: be a squeaky wheel

The attending physician on floor 6A was usually preceeded by one of his interns, who would come to ask questions, take vitals, poke and prod, and ask me to breathe so he could listen with a stethescope. Then the full-fledged doctor would show up, with a group of two or more of his interns (I called them "doctorlets"), and repeat the process, which never elicited any new or exciting information. The typical questions were always: "How's your pain?" and "Any shortness of breath?" or "How are your bowels?" or "Much of an appetite?"

They would provide medication based on my answers, which gradually resulted in my taking, in addition to the patch I already had, an increased dosage on the patch, pills for pain (a narcotic and ibuprofen), pills for muscle spasms, muscle relaxing pills, pills for promoting bowel movements, pills for softening stools, pills for stomach health, pills for sleeping, pills for depressions, pills for anxiety, a powder mixed with liquid for--well, they were never able to really clarify what the Nutri-phos is for (I think it might be something like pedialyte)--either an injection of a very powerful opiate or liquid morphine taken orally when I was to be moved, and an incredibly painful shot for preventing blood clots that felt like a bee sting and which I decided might have consisted of concentrated bee venom. After having been immobile for several weeks and on various narcotic products, my digestive system was seriously backed up, which was leading to the abdominal pain and spleen/gallbladder symptoms. So they decided to step up the cleansing of the alimentary canal and also prescribed things intended to flush the colon from every conceivable direction. Yes. You know what I'm talking about. Mercifully by this time I had a private room.

Naturally, I came to dread visits by the attending and his little doctorlets. They were torturing me. Every time they came to visit, I found myself getting nauseous and vomit-y. When my dad and Susan came into town, they took over talking to the doctors when they could (the timing of their visits meant that sometimes they'd miss him and his posse on rounds), and would even leave the room to talk about topics that seemed to turn me green.

I was not in a good way.

When I got moved to my private room, I might have looked forward to getting more individual attention and care from the nursing staff. I now know that this does not necessarily happen.

One of the things the doctors told me is that I needed to drink as much as I could. Take in fluids at all times. Any fluids. Juice, water, milk, anything. I didn't seem to be getting any water, although they did have me on an iv. Also, food is important to get the bowels moving. I needed to keep my digestion working, but I didn't seem to be getting any food, either.

I was actually getting kind of hungry, which at that point meant that I was starving, since my appetite had generally been quite poor, but my breakfast never arrived. I assumed this had something to do with having been moved. Maybe my breakfast got delivered to the other room? By lunchtime I figured things would be straightened out, but again was kept waiting. They had been quite prompt with the food delivery; are they just slower on this hallway, or something? The doctors came, asking about my appetite, and they went. I complained I hadn't gotten any food, and they said they'd make sure the order was there to get anything I wanted.

A few hours later I was ready to chew my arm off.

I called the nurse.

"Um, am I supposed to get a lunch? I've been waiting and I'm really hungry."

"Oh, your orders say no food or water due to a test."

"What test?" I had been told no food or water for the untrasound, but that had been done at six o'clock the previous day.

She flipped through the chart, and found it. "Ultrasound," she said. "You need to not have food or water before the test."

When I pointed out that the test had already occurred--"Or is this another one?" I asked sarcastically--she looked a little bit disconcerted and went to go check.

A little bit later, somebody from food service showed up with a tray. Hospital food is not exciting, nor is it particularly appetizing, but I felt myself beginning to drool. Food, glorious food!

I beheld my tray. It consisted of clear broth, apple juice, and a plate of air.

I laughed hysterically. Clear liquid diet! This is just great...so I hit the nurse call light again and told the person who answered that my plate of air really wasn't the lunch I had been hoping for. "Have you been eating?" They wanted to know. "Usually when you're not eating they start you on clear liquids then..."

Yes, yes. I know all that. But I wasn't on a restricted diet. It was only for that one test, could I please have something normal, instead of something imaginary? He went to go ask the nurse if it was ok. I think she was embarrassed, because they agreed to get anything I wanted. My toasted bagel with cream cheese and container of chocolate milk were delicious.

This was not the only time different shifts of the nursing staff had some confusion about changes in my orders; I learned that as a patient, I was going to have to keep on top of things and let them know. My dad and Susan also helped keep a running list of questions to ask the doctors, which helped immensely. It's also good to know that you can question anything, and you do have the right to refuse the bee-sting shots if you just can't stand them any more, or the plate of air if you want something tastier.

To be continued...

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Tuesday, November 22, 2005

Cosmos

I used to watch Cosmos with my dad when I was young. I am thrilled to see it on the Science Channel again, not only because I remember the time I spent with my dad, but because it is a great show.

Carl Sagan comments that throughout history, humans have pondered the origin of the cosmos, but "ours is the first generation with a chance at finding out the real answer." The show looks dated, Sagan has funny hair and wears turtlenecks, but the questions he asks are as important as they have ever been. It is tempting to not ask those questions, and there are some who think that to even ask is the height of heresy, which depresses me. I love that, for a time, an advocate for inquiry and scientific thinking was actually part of the public consciousness. Carl Sagan was spoofed by Johnny Carson; proof that he made an actual impact.

The current debate over evolution vs. creationism, and the fact that so many people don't care that science is being whittled out of our schools makes me wonder if this generation really will find out where we came from. Dressing up creationism by calling it "intelligent design" does not make it scientific and objective. Eliminating myth and religion from the human experience does not "prove" science. One of the fantastic things about Cosmos is that it finds ways to relate natural phenomena to how people experience them: the episode I saw this evening talked about Hindu mythology and how the dance of Shiva represents the cyclic creation and destruction of the universe. He points out that modern cosmology is simply a new mythology, which asks the same questions mystics and religious people have been asking for as long as people have existed. If there was an origin to the universe, and if there was a creator, how did the creator come into being? Why not assume there was never a beginning and that matter has always been there? Wouldn't that be easier?

People seem to want easy answers, but how can there be easy answers if we don't even bother to ask the questions?

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