Thursday, February 26, 2009

Well Within Normal Range

I got the results back this morning of my genetic test. I had to leave the house at 8:00am, which is a time that I'm normally asleep these days, and it would've been unpleasant except that it snowed about an inch and a half in the night and the sun was out this morning and everything was glowing white and lovely. And my genetic counselor lives by U Village, so she was able to get in just fine to the UW Hospital: a happy coincidence of a patient and a practitioner with easy commutes. Lots of people were late or not coming at all today.

I did note, as I walked briskly and unencumbered along the corridors of UWMC 8SE, that the last time I was in this wing—late July of 2008—I could barely walk at all along the corridors, let alone without a walker. Let alone without oxygen. Let alone briskly.

Anyway, it turns out that I do NOT have a gene mutation in BRCA1 or BRCA2. That is, the testing company (Myriad, which holds the patent), did not detect any mutation. I then asked what a mutation actually is, and this is what I found out:

Say that a gene is a 1,000 page book. When you're looking for a mutation, the first thing you do is to read the entire book looking for misspelled words. It used to be that if you didn't find any, you'd assume the book (gene) was normal. In the last four years or so, an additional test has been developed, which is called "gene rearrangement." In this test, the book (gene) is read to see if all the parts come together in a coherent way. Is Chapter 1 at the beginning, and Chapter 2 next, etc? Or is Chapter 8 first, and then Chapter 1 in the middle of Chapter 10, and Chapter 4 at the end, way past the epilogue and the acknowledgements? All the words can be spelled correctly, and the book can still not make any sense (and let's assume the book is a standard beginning-middle-end narrative, not some structureless postmodern creation designed to turn our understanding of the world upside down).

Even if a mutation is found, where in the gene it is found is at least as important as the mutation itself. For example, a mutation can do something as benign as change the color of something. Let's say the car is supposed to be red, but the mutation turns it green. The car is still perfectly functional in green (note: we are currently not creating modes of transportation genetically. This is not the world of Battlestar Galactica, with the robo-biological Cylons. It is just an example.). The mutation could, however, change the information used to form the amino acids (building blocks of healthy tissue), and thus the wrong amino acid is formed, causing something to malfunction in the system. I guess, with the car analogy again, it could be a mutation that only allows the engine to race at 6500 RPMs (which would be bad for driving in first gear), or the brakes to fail if the car is going down too steep of a hill (which would be bad for driving in Seattle). I'm not real clear on this: for more, check out Wikipedia (of course).

Anyway, what this means for my family is pretty much nothing. A positive test for a mutation would have suggested that my mother, or my female first cousins, or my brother's future children, might be at some elevated risk for early onset breast or ovarian cancer. But all this test shows is that I am, still, anomalous. Even if it had been positive, my mother would still have to have been tested to see if it had come from her, or had started with me (in which case, of course, it ends with me, too). But no, nothing.

There is one other genetic test that may shed more light on my situation, but my genetic counselor thinks there is maybe a 1% chance that it will (nevertheless, she will contact my insurance company to see if they will pay for it, and if they will—I say test away). This particular gene mutation (maybe PI 10 or 53 or something??? I can't remember, and didn't write it down) usually shows up in families that have multiple early cancers—childhood onset, and brain and bone and organ cancers, etc. Also, people carrying this mutation tend to have white spots on the palms of their hands and around their mouths, and have abnormally large heads. My head is somewhat large, I would say, but my counselor measured it, and it is well within normal range.

Friday, February 20, 2009

I Feel Like The Little Engine That Could

Got my tumor markers back from last week—I'm at 59, down from 68 last month. Incremental, but not insignificant, improvement. I'm chugging along. If I've done the math correctly, and since it is dealing with percentages I most likely haven't, I'm at about 60% above normal right now. Compared to, and this is probably wrong too, 2,630% above normal when I started. Any mathmagicians (Ian) out there who'd like to correct my math?

Thursday, February 19, 2009

Something Right About Our Medical System

This article, from the Atlantic Monthly, courtesy of my brother-in-law. I would have died if I were a New Zealander.

Wednesday, February 18, 2009

The Schedule

I have spent at least an hour this afternoon entering my infusion/test/doctor visits schedule into my online calendar. I'm not done with entering data, however—I still need to make sure I have everything updated in my paper calendar too, the one I carry around in my purse. Some people may think that my paper calendar is, or should be, obsolete. Some people may think that I should get some sort of extra fancy phone that will access my online calendar and whatnot, that it would save me time and hassle. They're probably right, that time and hassle would be saved, but I was able to dig through an old paper calendar the other day (from 2005) and come up with the phone number of a friend in Portugal who I really wanted to talk to. I can't see me having so much luck electronically (okay, okay, Luddite, yes, I know. So what.).

Part of what I was doing with today's scheduling was replacing certain medically-related events with other medically-related events, to wit: at my last appointment with Dr Specht, she suggested now would be a good time to get a PET scan, so that we can have some idea of what sort of cancer activity, if any, is still occurring in my body. The PET has to take place a minimum of two weeks after I stop using Neupogen, because Neupogen would trigger false positives in the bones, and I have to use Neupogen while I'm having chemotherapy, so I will not have chemotherapy for two weeks (although I will continue Herceptin because that doesn't really have side effects). This is exciting news in and of itself—I will get to have a taste of days 8-21. I did get up to day 14 in January after the Hawaii trip, and this is bound to be even better.

The reason for the PET scan now is that it will supplement the CTs that I have been getting and will help us determine whether nodules that show up in my lungs and bones are still active or are merely scar tissue (undoubtedly there is scar tissue from both the cancer and the PCP). I don't believe it will scan my brain, but I don't remember for sure. The PET measures metabolism of cancer cells versus normal cells. To do this, I get injected with radioactive glucose. Cancer cells take in glucose more quickly than normal cells, so a picture is formed of, basically, pooled radioactivity. The last PET of my chest that I remember seeing, several years ago, looked like a galaxy in reverse—countless dark stars glowing ominously in my lungs. This one won't be as bad, but it might still show the occasional star. Because of the radioactivity, I am to stay away from children and pregnant women the day of the scan.

I've been sitting here, composing this entry and thinking about where my time goes, and here it is: in my scheduling, in my blogging, in my hour or two per night of extra chemo sleep, in finagling my blocks of time and working everything I want to do around everything that I must do. This cancer and my recovery process are not things that I can compartmentalize—they permeate my existence. It's like a solution of water and some other mineral—often, as with salt dissolved in water, you can't see it. But you sure can taste it, in the tiniest sip. I realized some time ago that my cancer recovery was my job. It's finally coming to me that it is my full-time job.

Tuesday, February 17, 2009

Under Pressure

I remembered to take my oxymeter onto the plane yesterday for my trip home from San Francisco to Seattle. True to predictions, weather in Santa Cruz was pretty miserable. There's nothing sadder than walking along a closed amusement park boardwalk in savage rain and blistering cold, feeling your holiday shoes squelch and your pants lengthen with the weight of the water as they soak, until with every step your heels grind sopping corduroy into the puddles. But there's really nothing better than coming in out of the rain to a warm house full of dear friends, lots of tasty food, three little girls ages 1, 2 ½ , and 5, and a bottle of Bailey's.

Anyway, I had heard that cabin pressurization wasn't complete to sea level air pressure, and indeed that wasn't surprising, because, after all, our ears to pop due to elevation changes as we rise and fall sink. According to Wikipedia, for a plane planning to fly at 40,000 feet, cabin air pressure is set at about 8,000 feet during the flight. So I wanted to see how my oxygen levels were—after all, 8,000 feet is much higher than where I live (which is 180 feet).

They were a little low—about 92. I then took several deep, purposeful breaths, and my levels rose back to 98. L then tried it, and was also 92 (she was briefly 88, but I think that was a mis-read). Then L wanted to know what would happen if, instead of taking slow breaths, I panted. I should point out that I was sitting in the middle seat. So I put the oxymeter back on my finger and started to pant. I had panted for about a minute when the young man seated next to me—right next to me, of course—gave me a sidelong glance, obviously trying to be subtle about it, but obviously concerned that I was having some sort of medical emergency. L and I burst out laughing and I put away my handy little gadget, and pulled out my other handy little gadgets—my iPod, and my noise reducing headphones. I settled in for a pleasant hour and a half of new music. L, alas, was bombarded for the duration of the flight by loud, high-pitched, meaningless, high school drivel chirped endlessly by the person sitting just behind her. I only had to listen to it for about 10 minutes when I had to turn off my headphones, and I'm amazed L didn't explode with frustration. Honestly, girl, even your friends don't care, let alone all the people in a 30-foot radius.

Friday, February 13, 2009


Ian cut my hair this morning--that is, he used his clippers and buzzed my head. I do have some hair growing, most notably a relatively thick patch at the back of my head and some wispy patches at the sides, and I was under the impression that the side wisps, which showed under some of my hats, somehow masked the fact that I was basically bald. Anyway, it was a very chemo-looking head, but I'd pretty much grown used to it.

This morning, since I'm going on vacation, I got a haircut, and I have to say, I am pleased with the results. No one, I would assume, gets chemo for the hairstyle; women do choose to shave their heads completely bald, however. Now that my wisps are gone, I look a lot more like one of those women. My head suddenly looks much more attractive to me.

Well, Thank Goodness for THAT

Wednesday morning I had my check-up eye exam. Of course a trip to the eye doctor is uncomfortable, and here are the things they did. First, I had yellow dye dropped in my eyes, and a technician looked at them. To look at them, I held my head steady in that weird almost-head brace that they have (you always imagine how easy it would be for them to just slap a strap around the back of your head and immobilize you when you put your chin in that little cup), and the tech brought a blue light closer and closer to my eye until she touched it. I, naturally, blinked. She said something like "Oh, not numb enough," and dropped more dye in my eye. Then she tried again, and I blinked again. The third time, she said she would just have to hold my eye open. Well, YES, of course you will! Then, while she was holding my eye open and looking and the surface, she told me that some people have a gag-reflex when the light touches their eyes and they simply throw up. Yep, throw up. Right there on their laps, the machine, and the technician. She had one man in once who, the second the light touched his eye, passed out and wet himself. I got off lucky.

Then my eyes were dilated and scanned with the least torturous of all the devices—a machine that just has you look at flashing lights on a dim red background while it takes pictures.

Then the doctor came in, held open my dilated eyes, and shined that powerful magnified light all the way onto the back inside wall of my skull, while I looked up and down and right and left, each eye. Then she gave her diagnosis. The little patch of fluid in my right eye hasn't disappeared; in fact, seems to have shown no noticeable changes. It certainly wasn't worse, however, so that was good. "Not bad," said Dr Meyers-Powell. "It's not worse, and since you're pretty much able to see, I think we'll just add an eye drop to the one you're already doing. I don't think there's any need to stick a needle in your eye right now."

Bleahgh. WHAT?!?

She laughed. "You wouldn't feel it at all," she said. "Come see me again in six weeks."

I was comforted, at the eye doctor's, with the knowledge that a needle in the eye wasn't going to be felt. But later that evening I was talking about the appointment to friends and I realized this: You may not be able to feel it, but you sure as hell are going to SEE it. The very nature of eyes is that they SEE, and a needle coming RIGHT AT YOUR EYE is something that you CANNOT AVOID SEEING. They're certainly not going to stick it through your lid! Ian suggested that maybe they could, somehow, numb your optic nerve so you can't see the needle coming, but I think that would be slightly, ever so slightly, worse. The dentist always warns you, with the Novocain, that your smile and your ability to keep food in your mouth when you chew might never come back if they accidentally sever the nerve. It would be so much worse to have that happen to your EYE!

Keeping my fingers crossed that this new combination of drops does the trick.

When Day 7 is Also Day 1

I had my infusion yesterday, Thursday, for a very good reason—I'm leaving at noon today for Santa Cruz to spend the long weekend with my college girlfriends (lest you think "Sunny California! How lucky!", let me inform you that the weekend calls for heavy rain and temperatures hovering around 50 degrees. But still, college girlfriends!). The chemo drugs are definitely prescribed with a seven-day cycle in mind, and even one day early has a noticeable effect on my comfort. Last night, for example, I experienced some bone pain that I associated with the Neupogen from day 6, which, for several months, I haven't been injecting the night before a treatment (my dose was dropped from 6 to 5 shots last summer). I'm assuming that the added Neupogen in my bone marrow reacted to the early Taxol and Navelbine. At any rate, for about an hour it was quite painful. The cure seems to have been my cheeseburger, onion rings, and chocolate-cherry shake from Kidd Valley, followed by The Jewel of the Nile and Tool Academy.

Anyway, I feel just slightly off today. The reward, however, is that next Friday's infusion falls on Day 8!

Monday, February 9, 2009

I Find It Surprising, Although I Suppose I Shouldn’t

I was pretty much exhausted yesterday, and had a hard time getting out of bed this morning, which is pretty much the cycle of my weeks. If we say infusion is day 1, on day 2 I'm pretty wired for much of the day. I tend to sleep for a couple hours in the clinic (Benadryl), but by bedtime I'm wide awake (Dexamethazone). I usually go to bed, but I lie there becoming more and more awake, until I give up, and get up, and go do something productive. Occasionally I've watched TV and knitted into the wee smas; this weekend I sewed a birthday gift for Cousin S (only a month late this year, instead of 11 ½ months late like last year). This week I went back to bed a little after 3:00am, and woke again at 6:30. This was actually the second day in a row that I woke at 6:30, which is bad, because then the dogs get up, thinking it's time for breakfast. It's not time for breakfast, of course, but they're so completely starving that you feed them anyway, just to get them out of your hair. And then, because essentially it's the middle of the night still, they both go back to bed for several hours. I don't, because I'm awake, so I get up and make myself caffeinated coffee (which I stopped drinking daily about 18 months ago), because I know otherwise I'd crash at some point midday, and I would rather spend the day awake and be able to sleep a normal night's sleep when bedtime comes around again.

On day 3, then, I'm pretty much useless. I sleep something like 10 or 11 hours, drag myself out of bed in mid-morning, and pretty much lie around all day. Fortunately, two mornings in a row of 6:30 breakfast did not a habit form, and yesterday the dogs slept until Ian got up at 9:30. I did make it down to Renton to have lunch and a game of Scrabble with my grandmother, who's inching toward 94. I was roundly beaten—238-298. After I returned home, I napped for about an hour and a half, then went to bed for real around midnight.

Today, day 4, I had my riding lesson. It's hard to get myself out of bed on day 4 as well—it's so warm and cosy there in the flannel sheets, under the down comforter. I drank caffeinated coffee today as well, to help me hurry my way over to Woodinville, and make it through my lesson. Next month I'm actually changing my lessons to day 6, when I usually feel pretty normal.

Last week on day 5 I walked my three miles—I may try a similar-length walk tomorrow morning.

On day 6 I'm feeling almost like my old fit self, and day 7 even more so. On days 6 and 7, I often find myself thinking about setting a regular waking time, consonant with Ian's, and a regular bed time. I think about when I'm going to get back into rock climbing (holding me back are both the mild neuropathy and the fact that I'm bloated—and my fingers are bloated—for a couple days after the infusion), and maybe playing Dance Dance Revolution a couple times a week to get some aerobic exercise. And then the cycle begins again with the infusion.

Nevertheless, here is what I find surprising—that I feel tired at all. That I am reacting to these drugs at all. That there is a recognizable pattern. I guess I'm partly surprised because it's taken me 8 months to really recognize the pattern, to know more or less how I'm going to feel on a given day. I mean really, 8 months?

I suppose that another part of why I am surprised is that I really seem to be dealing very well with the medications. My neuropathy is hardly noticeable at all. I don't have any nausea. I don't have any bone pain. I am breathing fine. My heart rate is normalizing. My guts are functioning, even though I've been on low-dose antibiotics for six months. And so why, then, do I continue to be wired on day 2 and tired on day 3?

I suppose the logical answer is that I get pumped full of chemicals on day 1, and even after 8 months my body—the healthy part—still objects to that (actually, the cancer part, what's left of it, is probably objecting as well). There are things about the cycle that my mind likes—I do enjoy the drugged Benadryl naps. I do get a kick out of all the work I can do on a wired day 2. But mostly, now, my body and my mind both are looking forward to day 8, and day 9, and day 10, and so on.

Thursday, February 5, 2009

Noo Boob

Spelling the title that way accentuates the fact that I pronounce "new" as if it rhymes with "goo" instead of "few". I suppose this is an example of my flattened Pacific Northwest dialect. And the previous sentence is an example of my almost-vestigial linguistics nerd-dom. Who am I kidding. My linguistics nerd-dom is hale and hearty.

Anyway, yes, today I replaced my right breast prosthesis. The process is actually quite lovely—Nordstrom has a service fitting prostheses and mastectomy bras, and they accept many, many insurances, and besides that, it's Nordstrom, and their customer service is renowned.

My current prosthesis (sometimes referred to as a "turkey breast", although I suppose mine is really more the size of a chicken breast . . . or even a quail breast) doesn't seem to be aging at all quickly, but I have, somehow, put on about 15 or so pounds since I received the original prosthesis. It's not actually a surprise that I put on 15 pounds—I was a lean, mean fighting machine two years ago when I had the mastectomy. I had a lot of restless energy leading up to that appointment, and I used up as much of it as I could on the treadmill. I liked the resulting body . . . and at the time I liked spending all those hours on the treadmill. But it turns out, when I'm not full of fear, I'm also not full of excess adrenaline. And so my extant boob grew a little.

Also, I think I was in the habit of bra shopping more than once every two years. All my bras now have to have a pocket sewn into the right breast to hold the supplemental boob (actual mastectomy bras come that way . . . but actual mastectomy bras look like the bras your grandmother wears with her parachute panties), which is another great thing about Nordstrom—if you buy a bra there, any bra, they sew in the pocket for free. So I've been wearing the same four bras for the last two years, and they were becoming threadbare and the elastic had definitely lost its zing.

Anyway, my size actually went up and down. The cup size grew from a B to a C, but the band size fell from a 36 to a 34. I'm guessing that that's related to the lack of rock climbing that I've been participating in for the last year, and so my back is just a little squishy instead of taut and rippling.

The most interesting part of the morning, however, was that the prosthesis itself has pretty much completely changed shape. In the old boob, there's a taper from the center of my chest to under my arm, to simulate the appearance of actual flesh. In the new boob, the taper actually goes the other way, to simulate the appearance of actual flesh. Also, the real squishy part of my old boob is on the inside, nearer the skin; the real squishy part of the new boob is on the outside, so it feels even more boob-like when you poke it (which I like to do, although usually I manage to not do it in public).

Here's a question, though: I have only ever seen a sort of peachy-beige prosthesis (except for my swim form which is clear, and which I didn't replace), which isn't too surprising since that's the color of my skin. But do they make brown ones? I suppose it doesn't really matter, since it's inside your clothing . . . Okay, just did some quick research. Amoena, the company that made my boobs, does claim to make darker tones for people with darker skin. I haven't been able to find a photo of those tones, but at least they're available. What's far more titillating (forgive me) is this: Nearly Me Attachable Nipples. I suppose if I had two replacement boobs (which begs the question: why bother?), I might get them matching nipples. As it is, though, I buy a lined bra that camouflages my real nipple pretty well.

In the below pictures, the old boob is the one on the right, and the new boob is the one on the left. Pretty weird, huh?

Tuesday, February 3, 2009

Three Miles!

Walked three miles today with the dogs--up to MS's house in Tangletown, and back down to home. Lovely afternoon, and even Hoover wasn't a total menace on his leash (I've been trying to give him things to do, like sit and stay, when other dogs--who have a perfect right to exist--encroach on his territory simply by being alive. He likes that he gets rewarded for borderline behavior. I mean, he sits, but mostly because I keep saying "Aa . . .AAA!" at him.). It felt good to be out.

Monday, February 2, 2009

Nice Day

My riding instructor, S, is one of the 1700 women I know who are pregnant right now, and as such she is going to be teaching me a little less often for a while. To fill in the blanks, T, who is the owner of Phoenix Farm, took over for me today. It was a really great lesson. Clearly I've not only been getting stronger; I've also been listening to S and really working on my posture and my aids (telling the horse what to do). I've also developed a relationship with Gjinger, my usual mount, and so I know that she's going to bulge left (curve her left shoulder out whenever possible and pull on her left rein so it gets longer) and slow down from a canter to a trot right before the pole (not a big deal with the pole lying on the ground; more of a big deal it's a jump and she then stops short, or tries to jump from the trot) if I don't keep at her. She listens when I ask her to do things, though, and so my lesson time is more efficient. I don't have to ask her seven times to go into the canter anymore; I ask and she goes. Today, when I finished up and decided I'd better call it quits for the day, I looked at my watch and saw that I'd been at it 45 minutes! Pretty darn good, if you ask me.

After that, I took the dogs to Magnussen, where I had to park in plebian parking for the first time in six months. Fortunately, my friend LE was able to join me, to ease the transition and hang out in the park with goofy dogs. And it was sunny and 55 today!

Sunday, February 1, 2009

Not Handicapped Anymore

My handicapped parking pass expired yesterday, and I did manage to throw it up onto the rearview mirror at 5:57pm for about 3 minutes of free parking in front of a sketchy sports bar in Pioneer Square, before the meters turned off at 6:00pm. But today, it's worthless. No going to Magnussen and parking right next to the dog park gate anymore. No free parking at the Locks when we take out-of-towners for a taste of classic Seattle. Now, if I park on the street, I'll have to get out of the car like most other people and go pay for parking, then bring the sticker back to the car. Sigh. What really makes me sad about losing my pass, though, is that I had the perfect opportunity to use it Friday evening and I totally failed.

I went out to dinner at the old spaghetti factory with a group of girlfriends who I'll call my "book" group, and cajoled M into picking me up. When we arrived at the factory, the entire lot was full, except for the two handicapped places.

But I had forgotten my pass in my own car, in the garage, at home. I am still kicking myself.

But the fact is, I'm really not handicapped anymore. Sometime in the last week, I checked my oxygen saturation levels and my heart rate, and my heart rate was 74! This is excellent news—even though my oxygen levels have been normalizing, my heart rate has continued to be alarmingly fast. Simply standing up, just over one month ago, drove it to 120. Even lying flat on my back in bed, for several minutes before checking, it rarely went below 88. So 74 is a relief. Also, last night I took the dogs for a walk, 14 blocks (not too far, but I'd spent several hours already yesterday painting at L&S's house), downhill and then uphill, at my former fast pace, and I tested myself as soon as I got back into the house (up about a dozen stairs). Oxygen 95, heart rate 137 (in the hospital, just walking 50 feet drove my heart rate to 170 and my oxygen, while I was on supplemental oxygen, into the high 80s). About a minute later, oxygen 95, heart rate 122. I went piddle, then oxygen 99 and heart rate 92.

But oh, I miss that pass.