Friday, September 05, 2008

Vacation is GOOD For You (and some slight marketing for Amazon)

Greetings. After not having posted for a while, I have a number of things to discuss. So pull up a chair, grab a beverage of your choice, and let's get going, shall we?

Vacations with Brian - This photo album includes pictures of our trip to New York to see Brian's brother and nieces and nephews. I wish we could have seen more of Scott and Charles, but it was great to spend time with the kids. We tried to go see Wall-E one day, but Charlotte was scared of the explosions, and there was a fire alarm at the movie theater. Instead we we all got together for lunch and then went to the non-fire-alarm end of the mall where there was a carousel. I was satisfied after one ride, but the kids wanted to go again, this time on one of the spinning cars that are like the teacups at Disney World. Olivia is pretty strong, and spun that thing like nobody's business. When they got off, they were staggering like little drunk people. All of the children seem inordinately fond of butter. This is what happens when you eat a mostly healthy diet. That which is usually forbidden becomes irresistibly alluring.

Later in the summer, Brian's parents took us to a minor league baseball game in Midland, Michigan. We got to sit in one of the luxury boxes and were treated to hot dogs, brownies, popcorn, and drinks. It was great fun, although the Great Lakes Loooooooons were defeated by the Iowa Kernels. (Brian and I went to a Tigers game, too, but forgot to bring the camera.)

My mom also generously took us to Stratford's annual Shakespeare Festival, at which they show more than just Shakespeare. We saw Hamlet, The Music Man, and a double-bill of Krapp's Last Tape and...I've forgotten the name of the O'Neill play--oh right: Hughie. We played pool (with a lower-case "p" that rhymes with "T" which stands for...Trouble!), ate swanky foods, and shopped (which I am sure Brian and John don't enjoy all that much).

Also included are some bonus pictures of Bronner's and a shot of me looking shorter than seems possible.

Martha's Vineyard - This is one of my favorite places in the world. I have gone every year (except 1998) for the last 11 years (and have the "Black Dog" t-shirts to prove it!). I get to go due to the generosity of my friend Sarah and her parents (who built the house we stay in and let their kids each have use of the house for a week out of the summer season--Sarah routinely picks the week of her birthday, which almost always involves perfect weather and frequently coincides with the Agricultural Fair). This year we got to see fireworks for Sarah's birthday. I finally bought one of those ribbon-on-a-stick things at the toy store--I frequently get in trouble for playing with the toys at the store and figured I should finally buy one of these things. We go to the yarn store, eat fabulous sandwiches at Humphrey's, drive all over the island, spend time at the beach, go see movies, and spend more than a little time watching movies and knitting. I wish we had busted out the Wii, though. I'd still like to try it.

On my way home, I waited in the airport at my gate next to a gaggle of women who had just been to a convention for Weight Watchers employees. They talked about points and whether or not they bothered using the "activity points" they were entitled to, running discussion groups, and the importance of drinking lots of water. The lady sitting next to me went to get some food and came back with a tuna salad sandwich. She then launched into an explanation of how she initially thought the turkey sandwich would be "better" until she read the label and saw the calories and fat content of each sandwich. The turkey apparently had cheese, mayo, AND pesto--making the tuna a more diet-friendly choice. She whipped out some kind of little device for calculating her points.

I felt very odd sitting there next to women who are obsessed with and employed by the business of losing weight. I keep getting told that I need to eat more because I shouldn't be losing any more weight. Lita doesn't care what I eat--ice cream, bacon, whatever--as long as I eat.

Summer is over, the students are back on campus, and I had some exciting new technology come into my life yesterday. For work I have a shiny new MacBook Pro--I am going to install VMware and then Windows XP so that I can check my web stuff in an array of browsers and platforms. Some of the work I do that looks great in Firefox for Mac doesn't look so great on IE for Windows. I won't have to switch between machines anymore to doublecheck. W00t!

Then when I got home, Brian was so excited about the fact that my birthday present had arrived, that he wanted to give it to me right away. I am very bad at insisting that he save my presents for my actual birthday (which is in October), so I agreed it would be delightful to open it immediately.

It was a box from Amazon containing...AN AMAZON KINDLE! Wheeeeeeeeeeee! I have lots of Amazon credit built up from my associates site (which I really need to update) and have already charged that bad boy up and acquired a few books. It can also store Word or HTML documents and can play mp3s and books in Audible format. I'm so excited! The screen looks awesome. I keep accidentally hitting the "next page" bar but speed-reading is an excellent skill to develop, right? Brian is the best. I also know who else is responsible; you know who you are, and you rock also. :)

The dread of my upcoming paracentesis is not quite enough to dampen my spirits today. Whereas I do get rather upset at the prospect of being jabbed in the belly with a ginormous needle like I am some kind of Capri Sun juice pouch, I have fun toys to come home to, Brian's supportive (and extremely comforting) presence, and the prospect of at least feeling better when the ordeal is over. This is not a procedure I will ever enjoy. Before the last one I had something of a hysterical melt-down and have permission to partake of an extra dose of the Xanax. My liver functions and tumor counts seem to be improving, so it's possible I might be able to have fewer of these taps--or at least spread them out more. I wish I didn't have to do them at all, but I suppose the alternative (exploding like that guy at the end of Monty Python's The Meaning of Life) isn't any better.

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Tuesday, July 01, 2008

Brain Update

The BrainI'm not bent on world conquest to the degree that the Brain is, but I have the same pale noggin and bags under my eyes. I think that's as far as the comparison can really go (unless somebody wants to make a crack about my shortness of stature). Brain may have been experimented on and possibly gets lots of shots, but I'm pretty sure they don't have to give him little tiny mouse MRIs.

I got good news about my recent brain MRI: The scan shows no new lesions, and the existing ones are reduced in size. Brain mets do not automatically go away; once they're killed, they either can sit there, inert, for quite a while, or sometimes they get reabsorbed by the body and disposed of.

At my appointment today it was decided to delay my next paracentesis until Monday so as to not do it too early--Brian and I are leaving for New York to visit his brother Scott and the various nieces and nephews for the Fourth of July. I also found out my liver function numbers are improved, and that I would be getting infused today. I had to walk over to "Med Inn" which is actually a hotel in the hospital for out of town patients and family which has treatment areas that are semi-private and they had a strolling massage-giver offering foot or back or neck rubs or whatever. They don't do that at regular infusion! And regular infusion is always out of bagels.

Pinky and the BrainSince the swelling in my brain is down and my cognitive function seems pretty much normal, I can set aside my fears I was going to end up incoherent and illogical as Brain's cohort, Pinky. I hope no more pesky lesions crop up.

"Pinky, are you pondering what I'm pondering?"

"I think so, Brain, but where are we going to find men's underpants that fit?"

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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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Thursday, August 30, 2007

Things One Does Not Expect to Pack for Vacation


I didn't actually manage to fit the sitz bath into my suitcase, but my rear-endal issues seemed to have resolved by the time I left anyway. I was a little worried the "Wet Ones" would be confiscated at the airport, since they're wet and all, but nobody cared. Also, the airline screeners neglected to notice the saline nasal spray I did NOT have in my ziplock baggie. I had forgotten it was in my tote bag; what if I had suddenly snapped and started squirting passengers or flight attendants with saline? It could have caused an international incident.

I had a delightful vacation; every August I go to Martha's Vineyard--my college roommate Sarah gets the use of her parents' vacation house there every year around her birthday (her parents aren't wealthy; they just bought land at an opportune time) and I have informed her that I plan to continue showing up until I am specifically uninvited. Her roommate Danielle also goes every year. They went earlier in the summer, which is when all the hot weather happened. This time it was chilly enough to require extra blankets, closed windows, and some afternoons of staying in watching movies and knitting socks.

This year we were being stalked by several Democrats with presidential aspirations, including Hillary Clinton, Barak Obama, and John Edwards. All three managed to be doing fundraising at the same time on the same teensy island. We could have paid to have drinks on the lawn of an Oak Bluffs house with Barak, or we could have paid to have a conversation and cocktails with Hillary, also in Oak Bluffs. I believe John Edwards was in Edgartown, which makes sense because that's where the bulk of the lawyers are. Oak Bluffs is a little more...um, populist.

It wasn't as exciting as the time we actually saw the presidential motorcade (and Bill Clinton's elbow), but it's nice to know that the candidates care where I'm vacationing and make an effort to show up at exactly the same time.

I wore my pink spandex swim cap to the beach, but wore a beach hat over it when I went into the water because I felt a little self-conscious about having just a swim cap on. They make swim caps with attached hair, but I didn't manage to get one this year for myself. Maybe next time. The collapsible hair stand was important for washing my wigs, although it did look freakishly like there was a decapitated head in the sink, then in the bathtub when I moved it.

I hate having to draw my eyebrows on every day, but it is kind of nice to be able to wash one's hair and be doing something totally different in another room when the hair is soaking.

Now I'm back from vacation. The lull after vacation is my least favorite time. I'd rather be having fun than writing reports, fixing printer jams, and dealing with meetings, appointments, scans and such.

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Tuesday, August 14, 2007

I Have Been Tagged

The last post sports a comment wherein a fellow-survivor says she is participating in an internet meme and has tagged me "It." The rules are to post seven facts about myself and then tag seven other people, listing their names in my blog with links to get people there.

Well, I have a list of people's names to choose from right over yonder in the margin, but what if those people already got tagged and get irked at being tagged again? What if I start getting multiple tags from other people who are desperate to come up with seven people to tag? I could Google for survivors to tag, but what if they take unkindly to some random stranger tagging them? I just can't do it. I have a fear and horror of irritating people (which is quite unfortunate because I seem to do so regularly without intention anyway).

I'll go ahead and post some facts since I was asked, but I don't really want to intrude on other people.

1. I can't swim. I have an extreme dislike of putting my face in the water, and am almost always sure I am going to drown unless I have some kind of flotation device. However, I go to the beach every year for vacation.

2. I keep talking Brian out of selling his motorcycle, only partly because he enjoys riding so much. The other reason is that I think it's incredibly exciting to be married to a man who rides a Harley, and I would be sad to not be able to ride with him. Besides, what would I do with my chaps if he had no motorcycle?

3. I have chaps. They have fringe down the sides, tee hee.

4. My Star Wars Death Star Space Station Playset is complete with the original trash compactor foam and rope swing. I had to acquire components from multiple sources. eBay: allowing people to relive childhood for lots of money plus shipping.

5. I have ridden a camel at Giza and been inside one of the pyramids.

6. I was born two months early but was actually bigger than the other babies in the preemie ward. It was the first and last time I was ever "taller" than my peers. It is also one of the few times I have ever been early for anything.

7. I can recite the "Pledge of Allegiance" in Latin.

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Tuesday, November 28, 2006

Giddyup

During our weekend at Brian's parents house in Evart, Michigan, we thought it might be neat to go horseback riding. The weather was beautiful, and I thought there might be places out in the country that would support riding stables open to the public.

Brian's dad heroically called a bunch of places, and Brian called a bunch of places. It turns out that many stables that normally would have trail riding were closed either for the holiday or because it's hunting season.

I suppose it would suck to get shot at while out riding.

When Brian and I left on Saturday, we found ourselves on the western side of the state at the Double JJ, which did indeed have openings for a trail ride at 2:00 p.m. We arrived early and wandered around the "Back Forty" which is set up like an old western town complete with jail, souvenir shop, and saloon where you can get burgers and grilled cheese and fries and what not.

We lined up to climb the stairs of the mounting platform, and the ranch employees brought forth around 20 horses for all of the people riding that day. We were instructed to take the horse over to one of the watering troughs, then line up by the gate. Brian's horse, Speckles, was very thirsty and Brian couldn't get him away from the trough (later during the ride, we opted for the slower ride that was walking only...I will not say it was specifically out of deference to Brian's lack of experience--I'm tempted to, but it's just as well I didn't try to bounce the heck out of my gimpy hips on a trotting horse). There was some debate about my horse's name. Some of the employees call her Oatmeal. Others call her Vomit. She was sort of dappled beige, cream, and brown.

I guess it depends on how you feel about oatmeal.

I enjoyed the ride very much. We saw wild turkeys and did not encounter any hunters. The Double JJ has cattle drives where they actually teach you how to herd cattle.

This ride was important to me--back when I broke my hip, I remember emailing Sarah (Sarah and Danielle and I had talked about planning a trip to a "dude ranch" the previous summer) that I probably wouldn't be able to ride horses any more, and that the possibility of a dude ranch vacation wasn't looking good. Well, f*ck that. I can ride a horse; I don't see why I can't take any kind of vacation I want (money notwithstanding). I am very proud that I was able to get on the horse's back and that I could walk when I got off. Ok, I was a bit saddle sore, but that's normal.

Brian says he prefers his steel horse. That's fine, but I don't get to ride the steel horse by myself.

The Double JJ also has sled dogs; we spent some time feeding them doggie treats from a gumball machine bolted to a tree by their enclosure. There's an indoor water park, but we did not have bathing suits. As we ambled to the car, walking funny from the long ride, a wedding party showed up--the bridesmaids were carefully carrying their dresses and I think we saw the wedding dress arive. They (the people AND the dresses) were going to assemble in the dance hall for the ceremony. I wouldn't necessarily have wanted a western wedding, but it made me pretty happy that people were assembling to have fun and celebrate.

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Wednesday, August 30, 2006

The Best Toystore in the World and Why I Didn't Need Shrinkydinks After All

(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.

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