I Think It Just Means I’m Really Out of Shape

So for the last three days I haven't been using my oxygen when I'm at home. Not only that, if I'm pretty sure I won't have to walk up any steep hills (read: starting with a grade barely noticeable to the naked eye), I don't even take Moxy. For example, we went to Tilth last night and Moxy stayed home (poor thing—it was an excellent dinner). We ate out at Carmelita last Saturday and I likewise didn't have Moxy, and I was wearing my wig (not the blue one), and it was actually a little weird to look perfectly normal.

A friend took me to the Witch Doctor today and convinced me that Moxy should come, just in case, but she (I guess Moxy is a she—why not?) stayed in the car the whole time. The friend came in.

When the oxygen-filling guy called yesterday morning to check on the levels in my tank (it had been the usual week), it was between 2/3 and 3/4 full, so we told him to come back in a week. My cheeks still feel strangely chilly and bare without the nasal cannula tubes constantly digging into them.

This evening was a real test, though. I went with Ian on a walk with the dogs, and we decided to walk down, then up Burke. Now, Burke has a definite grade, visible even with the naked eye. In fact, our house is midway up a relatively significant hill. The walks that I've taken in the past that I've written about here, the 10 blocks from my massage to L&S's house, those walks have been mostly level. Anyway, Moxy still had some air from the trip this afternoon, so I turned her on and brought her along. My oxygen levels on the way down the street seemed to be at about 93 or 94, with occasional dips down to 92 or jumps up to 96 or 97. To do an experiment, and since I was going downhill, I turned off Moxy. The levels stayed the same.

To extend the experiment, I decided to leave Moxy off as we started back up the other side. My heart rate quickly went up to 160, which is a relatively acceptable level if you're exercising pretty hard. My oxygen levels, however, stayed pretty much where they were on the way down—ranging from 93-96. So I turned Moxy on to 2 liters and continued trudging up the hill. And you know, to my surprise, my oxygen levels stayed basically the same, as did my heart rate.

Now, I suppose if I'd turned Moxy up to 3 or 4 my oxygen levels might have climbed higher, but 93-96 is a pretty okay range, particularly if I'm also exercising. Yes, 95 and up is normal, but 93 means my supplemental oxygen will be taken away soon. I'm not entirely upset about the prospect.

I am a little upset by how immediately I was short of breath climbing a very, very slight hill, though. My strength moving around the house and going to and from my numerous lunch dates has been so much like normal that I keep being surprised by how stairs get me, and how even minor hills get me. The evidence of this evening's oxygen saturation levels seems to imply that when my heart is pounding and I'm breathing hard, it really is an out-of-shape thing, no longer a lack-of-oxygen thing.

Much as I've grown to like Moxy, she is heavy. At this point, after this evening's experiments, if I have to be carrying her up hills I think she really might be more of a liability than a benefit.

The Visible Gimp

A month ago, the idea of walking around in public with Moxy made me a little nervous. I think we all, to some extent, like to blend in for the most part. And I, with my bald head, balding face, and portable oxygen tank, was becoming less and less blendy. Don't get me wrong—I do like attention. I even thrive on it at times, but I prefer those times to be of my own choosing and initiation. Still, I am who I am, I'm going through what I'm going through, and I'm not going to go too far out of my way to hide the fact that I'm having a summer of cancer treatment. I have my lovely real wig, for example, and I think I've worn it only a half dozen times. I like it, I just have a lot of scarves that I like, too, and most of the time I'm getting ready to leave the house I don't even think about the wig.

Anyway, I was interested to see how the general public would react to Moxy and me. I was expecting to be ignored even more than usual—you know we tend to avoid eye contact with complete strangers (but oh, the surge of power you feel when you do catch someone's eye—it's an interesting experiment, to walk down the street and try to look directly at people)—and I thought I would be all the more invisible with my weird oxygen tank and tubing. But the opposite has happened. Not tons of people, but certainly more people than when my face was unadorned, have looked me in the eye and spoken with me. Not earthshaking topics, certainly never "what happened to you?!?", but a lot of "nice day for boating, wasn't it!" or "have a good afternoon," or even just "hi." More cordiality than one usually gets from strangers here.

It made me start to wonder—what level of handicap or disability do you have to reach to become invisible again? In general, I blend in pretty well. Clearly with Moxy I'm blending in less well. But what would I need to add to blend in—by really, really not blending in—more again? A prosthetic limb? A wheelchair? Another 20 years of age?

When I was in Kenya in college, I had my first eye-opening experience of being a minority. Yes, there are places I could go in Seattle and be a clear minority, but not where I live, and not where I grew up in Maple Valley, either (unless you want to count me not being particularly Christian). Kenya was the first place I'd ever been where being white was weird. And I found myself, when I was walking the streets of Nairobi, embarrassed to see other white people. I looked away from them, ignored them, certainly never made eye-contact, and as I practiced those visually evasive maneuvers, I felt like I was avoiding looking at someone with a major disability or gross deformity. Like, I didn't want to embarrass those people in their unfortunateness by being aware of them.

I still struggle with this attitude a little, even now, 15 years later. I don't want to ignore someone because his or her appearance surprises me or makes me uncomfortable; likewise, I don't want to be overly familiar to overcompensate for my discomfort. The people who've spoken to me and Moxy haven't seemed uncomfortable, but then, we're all actors to some extent anyway.

Score!

I got the results of my tumor marker blood tests today and on the CA 27.29 I am down to 215 from 461 (remember the recommended high is 37, so I've still got a ways to go but NOT AS FAR!). On the Carcinoembryonic Antigen I am down to 6.2 from 15.5 (with a recommended high of 2). I am quite pleased, to say the least.

Another Important Blood Count Correction

So the same reader who brought to my attention the Hematocrit/Hemoglobin issue (who is not always a lurker, but since he has been for these two issues I won't out him, although he's been right both times so maybe he wants to out himself), asked whether or not I was really sure that my understanding of the measurement of my white cell counts was accurate. Turns out it wasn't—I found an old blood test today in the door of the car and was able to check out what it really says. What it says is this: In the reference range column, normal is a range of 4.3-10. Mine, at its height earlier this summer, was at 42. But what it says in the results column is 42 THOU, which became, in my head, 42,000 out of a recommended high of 10. However, I do think that the units are in thousands for both columns, so I was off by a magnitude of 1,000 for my high scores (but accurate for my 5.6 recently). Blame it on chemo brain, or age, or merely a misinterpretation of a somewhat misleading spreadsheet, but I think I've got it figured out now. I'll double check with my nurse tomorrow to make sure I'm reading it correctly now. But 42 does make a lot more sense than 42,000 on a scale of 4.3-10.

A Much Better Workout

Taking the dogs to Magnussen Park at sunset, to the off-leash beach (at least one mile walking round trip!) and seeing that our introductions of Hoover to water are paying off—he swam out to chase Spackle to get his ball (Hoover still has no interest in chasing his own ball) multiple times, and seemed to really enjoy himself!

Workout

I've talked about poop (or what leads to it or doesn't) a lot here already, and I'm going to again. But this time it's not my poop. It's probably Hoover's. He, at least, was the one who brought it to my attention.

I was in our bedroom, putting away clothes from the clothes stand at the end of the bed (before it crashes through the floor and into the crawl space through the sheer weight of our laziness), I had just opened Ian's window for some air, Hoover came in, and I started to smell dog shit. I was up by the head of my side of the bed—not a place you want a dog shit smell, and I started talking to Hoover. "Did you just go outside Daddy's window?" I asked. "This sure is stinky!" Hoover wandered away, clack clack clack on the floor, and I suddenly saw it—a shitty paw print.

Now, if this had been Spackle, the problem would've been minimal. Unless he's actively on a walk, fetching, or greeting visitors, Spackle sleeps. When he comes inside, he goes straight to his bed in the living room. Yes, there would've been shitty paw prints on the floor, but in a beeline from the door to the bed. Hoover, on the other hand, doesn't sleep—doesn't even lie down—if he can possibly be wandering around the house instead. So the one room he didn't, in fact, visit with his shit foot was my office (thank goodness). But he did meander through the kitchen and in and out both doors, into the dining room and living room, the bathroom, the spare room, and our bedroom.

I shooed him outside, grabbed our spray bottle of organic pet cleaner and some recycled paper towels, and proceeded to clean most of our floors on my hands and knees. By the end, I was sweating. Cinderella came to mind.

Clarification on Neupogen

I had a question this morning on Neupogen and my counts, so I'll try to add a bit more information here. Neupogen, also called Filgrastim, GCSF, or simply G, stimulates the bone marrow to produce more white cells. It is frequently used as a supplemental therapy for chemo patients because of the way chemo attacks the body. Cancer cells are fast-multiplying, so chemo is designed to attack fast-multiplying cells. This includes, in addition to the bad guys, hair cells, fingernail cells, inside-of-the-mouth cells, and bone marrow cells. A couple decades ago, were I to be on the same chemo protocol without the benefit of Neupogen, I would probably have to be hospitalized because my white cell count, and therefore my immune system, would be so compromised. My experience with the Neupogen has typically, both this time around and last time, seven years ago, given me a hugely high white cell count—26,000-76,000, when normal is 4.5-11 or something like that. So when I saw my blood test results yesterday and, even with the Neupogen shots every day, it was normal, I knew that it was clear that the bone marrow stimulation was necessary. Now, does bone marrow stimulation mean that chemo is attacking the bone marrow all the more? Maybe, I don't know. But nevertheless, the stimulation is creating enough white cells to keep me at home. And since the insurance company is paying the $1700 per week, I'm happy to take it as long as I need to.

Miracle Girl

I had an appointment with Dr Specht today, nothing big, just for her to check on how I'm doing just about 4 weeks out of the hospital. I only had a blood test prior to the appointment, not anything bigger, so there wasn't a lot of new information she could give me—it was more just to look at me and hear what I had to say about how things have been going. The little bits of information she could give me concerned my blood counts—sure enough, the Epo stimulated HEMOGLOBIN, that's what it is, and it's now at 11, up from 10.7 (still lower than the 11.2 that I'm aiming for). My white counts, on the other hand, were at 5.26, which is entirely normal, and therefore very weird. Since I've been shooting up the Neupogen every evening, I've just been expecting the white counts to be high, like 26,000. But they're normal, which means the shots are really, really necessary right now.

My guts have been bubbling along slightly uncomfortably but I've been avoiding both constipation and its evil fraternal twin (actually, come to think of it, both twins are evil). I gave a stool sample on Monday just to be sure the inconvenient C Dif wasn't dogging me still, because of the way things have been bubbling along, but no, my bowels seem to be "normal". So whatever I'm feeling can be entirely attributed to chemo tummy, continued recovery from the hospital stay, and the fact that I'm still taking antibiotics every morning. I can live with that.

I have no real pain (a bit of bone achiness in the lower back, presumably from the Neupogen), haven't had hot flashes (also haven't had a period so that's good), am still doing pretty well at remembering words when I need them, am getting out for walks or lunches or shopping trips. I can get by with no oxygen unless I'm actually doing something more strenuous than typing, showering, or getting dressed.

"Miracle girl," Dr Specht said as they left, to the pharmacy resident who had accompanied her to my meeting.

I felt humbled, but also proud to be considered a miracle girl . . . but thinking about it later tonight, I have to say, a miracle is something that one can't really be proud of. The very definition of miracle is something that happens beyond all odds—not something that one works for. If I've worked at all this summer, it is to stay out of the way—to keep my will and my ego quiet so that I can simply live my life as it comes—illness and cure, doctors and friends, home and hospital—not judging my experiences, not worrying about the future, not fearing what will come (whether I fear it or not). And so, already being a miracle girl doesn't make me proud anymore. But it does make me glad.

Things I Didn’t Remember

For the last few weeks since I was extubated and more particularly since I've been home, people have been telling me stories of what I did while I was intubated and drugged, and I think we've all been a little surprised at how much I don't remember. Now, most people don't remember much from their time being intubated, because evidently most people are in a coma. This is generally preferred, because usually people who are intubated because of a massive illness like pneumonia are very sick, and being intubated—having a big tube stuck in your mouth, down your throat, and into your lungs to make you breathe, and necessarily also then having a feeding tube up your nose and down past your lungs into your stomach—is uncomfortable. To say the least. I understand Dr. Jason told Ian that lots of visitors were good for comatose patients, because even if we're not responding we are probably aware of the love and camaraderie, so Ian put out a call to everyone we knew to come and watch me sleep.

Well, surprise to everyone, my nurses perhaps most of all, I wasn't comatose. I was, in fact, often very alert and eerily like my normal self, except I couldn't talk. I made up for this by writing requests, observations, jokes, etc. on mini pads of paper, and evidently getting frustrated and annoyed when people couldn't read what I wrote. The reason people couldn't read what I wrote sometimes was that my hand would stop moving across the paper. I've looked at several of these notes—all were saved—and I have no idea what I was writing on lots of them.

In college I took a psychology class at 8:00am one quarter (freshman year—I didn't know any better), and I frequently fell asleep in the middle of note taking. My sentences would go along as usual for several words, then they'd just kind of peter out and dribble off near the edge of the paper. I hadn't realized before then that one could fall asleep if one were actively moving. One of my friends, who had the class at 9:00am (also a bit too early, it turned out) would occasionally ask to borrow my notes. She never actually found them to be very helpful.

Anyway, that's how several of my intubated scribbles look.

So the things I didn't remember:

Writing a note to Aunt C and Cousin T that said "Can you get my (unreadable)". They each looked at it, tried their best to decipher it, discussed, and I finally waved my hand to get the pad back. "NURSE" I wrote, in large letters, under my previous statement. "Oh my goodness, her nurse!" my dear aunt and cousin said. "Only the most important thing she could need, and we couldn't even tell!" Aunt C and Cousin T, no worries. I wrote it, and I couldn't tell.

Being given a notepad and pen to write notes with, complete with several general questions/answers already written out for me (thanks, Deane!), and requesting instead a half-size clipboard and small pads to fit on it (thanks Karissa!).

Having a guest book suggested, and requesting (ordering) that it be a particular handmade book from Port Townsend, purchased at the Elliot Bay Bookstore, and the pen that should be used was my new pink fountain pen with green ink which could be found in the left-hand upper drawer of the roll-top desk in my office. Fortunately, Ian found a rainbow collection of other pens (in addition to the pink pen which, I believe, Nat found, thanks Nat!), because one thing I wouldn't have suggested were I not drugged was having lots and lots of people use a new fountain pen. One or two here or there would be okay, but the nibs, the nibs!

Pen marks all over my hands, and finding at least four different colored pens in my bed when it was changed.

The hot water heater being replaced in our house. For months, we'd had a weird fungus growing in the frame by the door to the garage in the basement, but since we've had a history of wetness, we assumed it was coming from outside the house and somehow seeping in. We knew it had to be addressed at some point, but that point kept being shifted. Thanks Marsh and Nat for figuring out what the problem really was!

And the biggest one—my friends, S&C, both women, getting married in California! I attended their first wedding in Phoenix in 2000, which was gorgeous, and I really couldn't believe I'd forgotten the news (I'd read it in an email while intubated) when, weeks later, I was refreshing myself on emails from that time. Congratulations, Ladies!

I do remember some things from this time—namely, I have memory snapshots of, I'm pretty sure, everyone who came to see me. They have the quality of dreams, these memories, but they exist nevertheless. My Uncle K, the other day, did ask if my memory was spotty enough that I might remember him coming to visit and I said no, it wasn't that spotty—I knew he hadn't come.

I am slightly embarrassed by how bossy I evidently was, made all the more obvious by the fact that I was supposed to be unconscious. Two of my cousins now, S and T, have given me kitch with the same saying: "I'm not bossy, I just have better ideas." Sigh.

Just Like Professional Cyclists

My red cell count, the hematocrit part, the part that carries oxygen around the body to my tissues and my brain, was slightly low today, 10.7 when the lowest recommended score is 11.2. This happened the last time I was on chemo, and it's pretty easy to deal with. It's also, considering my current oxygen issues, pretty necessary to deal with. I want my blood to carry as much oxygen as I can possibly make it carry. There's a drug called Epotin which stimulates red cell growth in the body.

If you've heard of Epotin, or simply Epo, it's probably from watching races like the Tour de France in the last couple years, where cyclists were giving themselves controversial shots to make their blood thicker so they could push harder and longer. The effect achieved is not unlike the effect that marathoners are going for by training high up in the mountains. In a recent New Yorker, young American runner Ryan Hall, from Big Bear Lake California (7,000 ft), was featured as an example of this phenomenon: your body learns how to make more hematocrit at higher elevations where the oxygen is thinner, thus, essentially, thickening your blood. When you return to sea level, it takes some time for your body to readjust to the denser oxygen, so in the meantime your muscles and brain are getting the essential element much more efficiently than those who don't have the option of training high.

Anyway, I thought about it today—did I want to start training for a marathon and camp at, say, Sunrise on Mt Rainier to be high enough, and thicken my blood that way? Or did I just want to go with the pharmaceutical (even more expensive for a shot than Neupogen is, so I've heard) that would take 15 seconds to complete? Well, I chose the shot. Sometimes I'm lazy that way. I'll let you know next week what the results are.

Note: It's been pointed out that it's actually probably the hemoglobin part of my blood that's low. I suspected it might be, but I forgot to get a copy of my blood test results to verify my facts and, having been a fact-checker for six months several years ago, it's not something I enjoyed enough to want to continue doing it in my own work (although I think for the most part I'm pretty accurate). Thank you, careful Lurker, for the heads up!

Conversation

I went downtown yesterday with my friend MS and her mother for a little bit of girl time—namely Anthropologie and a late lunch (which included a vodka martini for the visiting mother—you go girl!). As they arrived at our house to pick me up, I finished filling up Moxy, put on my nasal cannula, and soon we were down the stairs and across the street and in MS's car. We made our way down to Pacific Place to park, got out of the car and closed everything up.

"How much oxygen do you have in that tank?" asked MS, as we started up the ramp to the floor 5 elevators.

"Oh, plenty," I replied. "At the level I'm at, it's almost an indefinite amount. At least 8 hours."

Then I looked down at Moxy. "Actually," I said, "I forgot to turn it on." I twisted the dial. "Obviously, now it's going to last much less indefinitely than before."

Hysterical laughter from MS.

"Clearly, oxygen supplements are not a life-or-death thing for me."

Lots of Time on the Lake

The last two evenings we've gone out on our boat, then gone out off our boat and swum in Lake Washington. It's been hot the last couple days here, in the high 80s and maybe even low 90s, and the boat has been such a blessing. On Friday night we had planned to take our friends D&K out for a ride and to dinner over in Kirkland (the last time we tried to take them out was 1 July, the evening I spent in the ER before being admitted to the hospital with pneumonia—I suppose Ian technically could have taken them out without me, but it's probably a good thing he didn't), and about 4:00pm I got a call from M, a mutual friend. "I kind of hate to ask," said M, "but could I crash your boat party tonight? It's just so hot!" Turns out she was stuck in westbound traffic on the 520 bridge, watching people boating and skiing and swimming, on her return from a meeting on the Eastside where the client didn't show up, in an old, non air-conditioned car. A perfect recipe for just abandoning the car and leaping over the side of the bridge, but she managed to control herself and call us instead.

So five of us went out, and the lake was a rocking, rollicking mess of waves from all the boat traffic, but we swam out in the middle anyway and it was great. I wore my lifejacket in the water because it didn't work so well to wear the oxygen and I didn't want to overexert myself and sink to the bottom (or to farther than 4 feet below the surface where the sea monsters live), and aside from cutting into the underarms a little, it worked very well.

The wave action (and the fact that there was a bit of breeze in addition to boat traffic contributing) made me a little nervous about a late-night dark and rocky return from Kirkland, so we decided to head back in to calmer waters while we could still see. We ended up down in South Lake Union at the Blu Water, where the deck seating was quite the crazy SoCal scene with all sorts of beautiful young people and alcohol-infused laughter and talking, boats rocking in the harbor, deep orange sunsets over water. Our quiet, slow, moonlit cruise back up to moorage was the perfect ending to the evening, and at 10:30pm our marina guys were still hauling boats around. And lots of boaters were arriving home all the time.

Oh, to tie this (somewhat remotely) to my summer of recovery, we took the opportunity to check my oxygen levels when I was driving the boat without using Moxy, and I was at 98. Pretty good, so I've stopped wearing oxygen on the boat. Another step!

Yesterday afternoon we had a Mathewson family barbeque over in Kirkland and the compound there, and we decided to take the boat over. Fortunately, Uncle K has a slip in the marina there, because Marina Park would probably have been crazy full. Anyway, Cousin S rode across with us, and the three of us stopped and swam in the middle of the lake again . . . which meant we actually arrived at 5:00pm for the 4:00pm party, because none of us had a watch and we were really, really hot. I wore my lifejacket in the water again but . . . sorry Dr. Jason . . . I stopped wearing it while I was driving the boat. Honestly, while I am willing to believe there's still some chance that I'll have a seizure, I haven't had one, I'm taking anti-seizure meds, and my brain lesions have been steadily shrinking. Also, with the poles to the bimini top and the windshield blocking me in, there's really no way a seizure would make me fly into the water. And Ian promised to dive in and get me if I did manage to squeeze through one of the holes. And it was HOT.

It was great to see all the cousins (first time all together in at least 1 ½ years) and eat tasty food, and then Cousin S and Mom and Marsh worked out a deal where she would drive their car back to Seattle to our house so they could come back across the lake on the boat, and so we stopped again, this time about 30 minutes after sunset, and Mom and Ian swam. Ian was a little chilled, but Mom was completely thrilled, because she got to float on her back in the now-calm lake, while the last bit of orange glow faded off the surface of the water and the full moon rose over the hills behind her.

And then we had a glorious skim across the dark water at 30 mph, and only hit an uncomfortably jarring wake once, and no logs.

Naming

We have new neighbors this summer. The ones two doors down to the east of us have two corgis, and they're awful. Not all the time, but they have woken me up every morning since I can remember, barking at something. Generally, it's at 7:30 in the morning. I was musing with Ian about writing some sort of note "What happens to your dogs every morning at 7:30am? If I had to be up then, I wouldn't even need to set an alarm. Unfortunately, I don't have to be up then, and furthermore, I really don't want to be. Perhaps we could discuss some ways of avoiding the 7:30 wake-up call." Of course, this morning they were quiet until 8:10, and while that's a more reasonable time to wake up, it's not a reasonable way to wake up, I think. The corgis bark throughout the day, too, which I know, can be a dog's nature. However, it's my nature to want the dog to shut up after the provocation has passed. I have been known to furiously shout "SHUT UP!" out the door of my office. I actually did some good.

We also have new neighbors to the north. They have been slightly more of a problem, because there is a yappy little dog, but also because there are are young and inconsiderate humans. Of course, that too may simply be their nature. Anyway, the night before last they were playing a game in their backyard—which is very close to our bedroom window—and talking, laughing, and occasionally screeching while they played. I was exhausted and finally fell asleep around 11:30pm, and slept pretty well until 2:30 when I got up to use the bathroom. I came back to bed and realized they were still out there, still playing, talking, laughing, and occasionally screeching. I shook my head in disbelief, then stuffed myself into my down pillow and tried to ignore them. Around 3:30am I finally fell asleep again. At 4:20, I was woken by another screech, and I said "What the hell?" and then Ian, who had been up since 3:30am hearing them, got up, put on a robe, and went next door to ask them to be quiet. And they were, immediately, and very apologetic. At 4:30am.

Last night, I was even more tired than the night before, and I fell into bed around 9:30pm. They were inside, and quiet, and I developed a plan to leave them a note the next day saying "thank you so much for being so quiet last night. We've had a rough summer over here, and our sleep is really important." You know, positive reinforcement. But then things got louder. I finally fell asleep around 10:30pm in a lull, but at 11:30pm I was awakened by laughter and screeching.

Now, this house was on the market from October until the end of June, but I don't think the people living there actually bought it. I think the owners probably just decided to rent for awhile, to get what they could out of it since no one wanted to pay what they were asking. The people living there are young—probably 5-10 years younger than me—and they seem to be kind of clueless about things like sound carrying. Perhaps they're not used to living in such close proximity to others. Certainly, they had a month to cement their behavior when our house was vacant, because I was in the hospital the whole first month they were here.

Anyway, I was not happy about being awoken at 11:30pm by laughter and screeching, and remembering the night before, I knew I was unwilling to put up with it until 4:30am. So I got up, pulled on some lounge pants and a t-shirt, slipped into some flip-flops, grabbed my portable oxygen tank, and stalked next door. I arrived at their house to find the front door open, and as I approached one girl at the far end of the room looked alarmed and said "There's a person at your door!" and then another girl immediately came to see what was up. I explained that their backyard was right next to my husband's and my bedroom, that we were having trouble sleeping though their noise, and that we'd had a pretty rough summer already. She apologized profusely, said they would close their back door and stay inside, and she gave me her phone number so I didn't have to go over again.

They did close the back door, I closed my window (it had been closed the night before and still the noise got us), buried my ears in my down pillow again, and slept relatively well. I said to Ian before snuggling down though that you would have to be pretty cold to be unmoved by a neighbor, about your age but bald, with only one boob and using an oxygen tank, asking you to by quiet.

Nevertheless, I decided it took moxie to go over there like that—to see strangers I had a complaint with in my vulnerable state—so that's the name of my oxygen tank: Moxy.

35-Minute Mile

I had a small bit of independent adventure yesterday afternoon, and I'm still basking in the glow of it. I had a massage scheduled, and considering that no one I knew was already going to be spending time with me, and the fact that there are buses and taxis that I can easily use, I decided to get myself there all alone.

Normally I avoid buses as much as possible. Mostly this is because I don't tend toward motion sickness . . . but I do on a bus. Sometimes all I have to do is sit down on the bus and I start to feel queasy. When I'm on long-distance buses in foreign countries I mostly find that I sleep, even when the rest of the passengers are drunk Lithuanian men (this is obviously a safer practice when I'm traveling with Ian, who mostly reads. Nope, can't do that). I think this is my body's way of holding on to breakfast. Fortunately for yesterday's adventure, I managed to not feel any discomfort until about 2/3 of the way through my trip and then I needed to start really paying attention to where I was and so I was distracted from my guts. I suppose I could blame chemo for the tummy trouble, but I won't. I'll blame the bus.

Anyway, the bus I chose is a very convenient one. It stops 2 blocks from my house (up the street), winds through the UW and on to U Village (good to note—bus stop right by Anthropologie), then heads north to 75^th, then west to Roosevelt, then north again. If I got off at 82^nd and Roosevelt, I would be a mere two long blocks from my massage, mostly a slight downhill stroll. Of course, I don't ride the bus much, and I couldn't quite believe it would stop every two blocks up Roosevelt, so after 76^th and 78^th I pulled the cord. And then at 80^th I felt compelled to get out (since no one else was), dragging my oxygen tank with me (someone asked me the other day if I had a name for my portable oxygen tank and I don't, but the more I get out of the house and drag it around, the more I think it'll need one. I'm open to suggestions.). Anyway, walking from 80^th added a couple more blocks, and a little bit of uphill. But I told myself I was just out being independent—I was not out even trying to walk my normal pace—and I strolled slowly on the uphills, and a little more quickly on the levels and downhills, and made it with good oxygen levels, and a heart rate that proved I was working out.

After my massage, I did the same 10-block walk that I last did June 17^th (note: yesterday's 10 blocks came after I'd already walked about ½ a mile—which makes it significantly better than the June walk . . . before the pneumonia), up to L&S's house. My friend who was gimpy at that time had just come home from a hugely successful major back surgery, soon to not be gimpy anymore. Ian met us there a little later and we all had a fine Mexican dinner, and at 8:30 I realized I was completely wiped out—in a very good way—and we came home.

But oh, man. This really convenient bus still meant I had to leave my house a whole hour before I would've if I'd been driving, to go a distance of about 3 ½ miles. Yes, I'm not doing too much with my time these days—a little writing, small projects around the house, reading, occasionally having an afternoon nap—but when I have the option of the car again, even if I'm still not extraordinarily busy, I know I'll struggle. The convenience and the speed of one's own car do, increasingly obviously, carry consequences. But the convenience and the speed.

High Score!

When I was in school growing up, I tended to get pretty high scores on assignments. I didn't always get 100%, however, and when I got, say, 97, the first thing Dad always said (bless his heart) was "What happened to the other three percent?" I think he was only partly kidding. I assume he was at least partly kidding. So I grew up thinking higher was better.

Well, yesterday in the clinic, my nurse handed me my blood test results and for the first time this go 'round, I saw my tumor marker numbers. The tumor marker tests measure a certain kind of protein in the blood, something that most people have in some amount, but that very much over-expresses when the body is full of tumors. The highest I had ever seen mine before, back in May of 2001 when I had some lung and lymph metastases in my chest, was I believe 176.

Yesterday's score on the CA 27.29, and keep in mind this is a significant drop from the beginning of the summer, was 461. For a little perspective, a normal, cancer-free body will be between 0 and 37. This means that my score is almost 12.5 times greater than the highest recommended score.

The other tumor marker test, the Carcinoembryonic Antigen (which is a newer one that I didn't have before), doesn't show me to be quite the overachiever as the first test. It gives me a score of 15.5 out of a recommended 0 to 2. That's only 7.7 times greater than the highest recommended score.

I don't know what the starting scores were—I never seemed to get a print out that included them and I never bothered to ask—but I would guess, having seen the chart that Dr. Specht drew up for us, that they were somewhere around 600 and 20.

There are, I have come to learn, situations—pain scales, cholesterol, tumor marker tests (some people might even say school)—where a lower score is definitely preferable to a higher one. I'm just glad mine are going down.

No Home Nurse Today

The nurse came last week and was amazed at how well I was doing, out of the hospital only a week, but nevertheless she decided to have someone come and see me for at least the next two weeks, on Thursday. So that would've been yesterday, and I got a call about 5:30 or 6:00 in the evening from the nurse, who asked if she could come today instead. Sure, I don't particularly care. I'm not doing all that much these days. But then she called again this morning, around 10:00am, and said that she had to go to a nursing home, and she wouldn't have time to see me. To my thinking, a nursing home probably needed her much more than me. Anyway, she said that either her supervisor or another nurse would be calling sometime today to set up another appointment. This has not yet happened.

Fortunately, I am not in desperate need of a nurse.

I think all they're supposed to do, actually, is take my vitals and see how I'm doing on the level of oxygen that I'm currently on. Since I have my own oxymeter, however, and at least once a week I see nurses and get my vitals checked and my oxygen levels officially monitored (when I go in for chemo), I really can't see that there's any need for a nurse to come to me anymore. There hardly was at the beginning, when I'd already turned down my oxygen from 4 liters, where it was when I got here, to 3. Then I saw Dr. Specht and she turned it down again to 2. Right now, I've taken it off, just to see what happens, and it turns out that blogging isn't really an exertion. My level is 96 right now, and 95-99 are normal.

I had a slight fever last night that lasted about 3 hours—went up to 100.4. I noticed it when I woke up from my afternoon nap and felt chilled in the warm house under the lovely afghan on my bed. I blame, in the best possible way, my Witch Doctor, whom I saw yesterday. He was very thorough, and the fever was probably related to mopping up some hospital-inspired infection. Today my temp is completely back to normal.

Also, I managed to close a window in our guest room that neither Ian nor I could budge last night. I had to use a hammer to get it loose, but in the end I was successful, and I only had to lie on the bed and pant twice. Not so bad!

 

NB—to be fair, Swedish Home Health just called about the nurse visit. Of course, they asked if they could just send someone next week, and I explained why maybe there wasn't any point, but someone is planning to come on Wednesday anyway. Okay, fine with me.

Appetite

One of the questions every medical professional asks when he or she is checking to see how you are is what your appetite is. Now, this is a question I haven't been able to have a standard answer to this summer. First of all, when I was on all the dexamethazone in June, my appetite was voracious. I could not eat enough, even after things started to taste at only about 30%. I could imagine that it was tasty, because it had been tasty to me in the past, and so the fact that the radiation had kind of canceled that out didn't slow me down at all. I mean, I ate a lot. I put on about 10 pounds that month. Part of the weight may have just been bloating (water retention? I don't really know the mechanics of it), but part of it was definitely all the extra meals I was eating.

In the hospital, my appetite was not good. I was hungry, but not for anything they had to offer me (although the vegetarian vegetable soup was at least tasty, and they do try. There is an extensive room service menu—they don't just feed you the standard hospital fare. Nevertheless . . .). Part of the problem there, I believe, was that my mouth and throat had just been injured by the intubation and possibly all the drugs, and so textures were difficult. I couldn't make myself eat bread at all, meats were unpleasant, lentils even were too mealy. All I really could eat was Amy's organic soups that we had nurses heat for us (and a notable bowl of tortilla soup that a friend brought) and Jamba Juice smoothies that Ian would bring and divide in two. I would eat one half fresh, then the other half, which had been sitting in the patient freezer, the next day (heated for 45 seconds in the microwave and with a spoon because it's almost impossible to get that perfect drinkable consistency back). I got enough food, and survived, but it was tough sometimes. And tedious to eat soup in bed, hunched over a too-tall and not close enough table. For breakfast I usually ordered yoghurt or oatmeal and a "seasonal fresh fruit cup". The yoghurt was Dannon and also had weird texture issues (a weird papery-floury dryness at the back of the throat), and the oatmeal was just bland but at least moist enough for me to eat. The "seasonal fresh fruit cup" was a travesty of a "seasonal" anything. When I was lucky, I got four fruits: cantaloupe, honeydew, pineapple and three red grapes. I'm assuming they're in "season" year 'round. The last morning, however (all the more reason to go home), my cup included a total of four pieces of fruit, and three of them were pineapple and the other honeydew, by far my least favorite of the four. My first morning at home we had fruit cup from the Essential Baking Company with apple, blueberry, grapefruit, honeydew, and pineapple—all of it organic, all of it chopped up that morning. It was a completely different experience.

Anyway, I noticed last night eating Barcelona! at the Hi-Life with visiting friends that I finally seem to have gotten my taste and my textural appreciation back. I've been eating everything but soup since getting home 10 days ago, and it's finally all tasting good. I had some toast points with spicy sauce last night and the toast didn't make the back of my mouth cringe. I had some crackers and cheese this afternoon and enjoyed the entire chewing process.

But, sense of taste, while important for food enjoyment, doesn't actually say anything about my appetite, which is a little odd. I'm assuming my stomach shrank while I was on the feeding tube; at any rate, I cannot overeat. I've been eating about four times a day since getting home because I don't like to go to bed hungry and I'm generally starving by 10:30pm, but I can't shove in more than a certain amount at any one sitting. I'm not upset by this, mind you. I certainly am happy to have some very natural and non-psychological restraints put on my tendency to eat more than I need. But it is a strange thing to get used to. Last night at dinner, for example, I got full—slightly too full—and even though the two desserts we six chose to share were exactly what I would've picked out myself, I couldn't even eat one bite. Not one bite. I tell you, it's bizarre.

But, my appetite does seem to be good. I get hungry, I eat a well-balanced organic diet, and I enjoy it. I don't remember having a lot of mouth or taste issues when I was on chemo seven years ago, so I'm hoping that now that the radiation issues seem to have resolved themselves, I'll be back to relatively normal eating.

Physical Therapy: Who Needs It?

Yesterday afternoon the physical therapist that the hospital sent to me finally showed up. She asked at one point when I'd gotten out of the hospital and I said "July 25^th" and she said "Oh!" as in "Oops, I'm a bit late getting here." She took my vitals (BP 100/60, pulse 84, oxygen 98), talked to me for a bit, commented on how good it was that I have a walker (sitting right now in a corner of the dining room because in the living room it got in the way of seeing people sitting on the other side of it—not so good for conversation), and asked for a tour of the house. I showed her around so that she could see if there were any dangers to my health, and also so that she could see that I could walk around. I told her I'd done the laundry a couple days before, my one concession to my current state being a folding chair that I sat on to sort and fold. I showed her the bench in the tub, which is, in fact, convenient because I don't get worn out at all sitting and can take a much longer shower which feels so good, still, after 3 weeks without one. She asked a bunch of standard questions: Appetite? Good. Edema? No. Fallen? No. Go outside? Yes. Pain? No.—then asked if occupational therapy had come yet.

"No," I said, "and actually, they called this morning to set up an appointment and I called them back and told them not to bother—that I was really doing just fine."

The PT said "yes, I was going to suggest that you didn't need to see anyone. I'll let them know back at the office too."

Finally, she asked me to stand up off the couch without using my arms—I'd explained that the only surprising weakness I'd felt was trying to get off the boat on Monday evening and finding I could barely step up the two feet from the deck to the side—but I was fine getting off the couch and she recommended I just do our stairs a couple times per day. "You are doing better than 99% of the people I see," she said, and took her leave.

Of course, today my first return chemo finally caught up with me and I spent most of the day lounging in bed reading David Sedaris, but I'm all set to start doing stairs tomorrow.

So Far, So Good

So my first infusion back went well yesterday. Things moved along speedily and I was actually out of the clinic just after 1:30pm, having arrived at 9:00am. We did some more oxygen testing, and I still qualify for home oxygen when I'm exerting myself, but I'm closer and closer to the cut-off point. I wasn't particularly tired after everything either, so we went out on the boat with our friends who are in town right now, and had dinner over in Kirkland. I don't know if I'll ever get tired of going to eat via water instead of land. We also picked up Ian in the boat—his work, being at NOAA, not surprisingly has a dock that he can use, right behind the Seattle Yacht Club. On the way home, we stopped by again and he brought his bike to the boat for the ride home. We didn't want to have it jouncing around with us for the afternoon and evening, but it was much more convenient to pick it up that way than to send Ian to work on a bus this morning. Anyway, I slept well last night, and had a nap this afternoon. I am just now starting to feel particularly tired, and I can sense that tomorrow will be a day of rest. But first, another supper out with friends!

Plucking

I've spent about 15 minutes this evening plucking my moustache and my eyebrows. It feels a bit weird to be pulling out hairs when, in the next couple months, I'll be completely (and not perfectly happily) bald, but the fact is I don't want to be a 35-year-old woman with a handlebar on my lip (that's really what it looked like I was going for when I got out of the hospital and was looking at myself in the vanity mirror in the car), and I like the manicured shape of my eyebrows when I put some care into them. So out the tweezers came, and out the hair came.

I'm at an unusual place right now with the hair loss/gain, after five weeks of chemo and then almost five weeks off. Things that are going to disappear have recently started to come back. First of all, my head hair fell out because of the radiation, not the chemo. It happened way too fast to be chemo-related, and my scalp hurt in a different way (an itchy, microwaved way instead of a hair-is-too-much-for-these-follicles-to-take way). My head hair is showing no signs of returning anytime soon, although my scalp does ache a little, so maybe that is a first sign.

My leg hair wasn't falling out, but it had stopped growing very fast, and some of it wasn't growing at all, until the tail end of my hospital stay. When I came home there were several extra long hairs on my legs, about as long as you'd expect from the last time I shaved them more than three weeks before, and then there were tons of very short ones. They're all growing about like normal now.

My moustache was still growing, but my lip wasn't holding the hairs very strongly, and I could pluck them, even the ones right under my nose that always make my eyes water, with minimal effort and no pain. But they're back to normal, too. It has not been pleasant (although it's been very satisfying) to pull the moustache hairs out lately.

My eyebrows were kind of like my leg hair—not really falling out, but not held in too tight, and not growing in as rapidly as usual. This changed about two days ago. For the last couple days, I've noticed that the space between my brows and my eyes, near the bridge of my nose, has looked dirty. Sure enough, not dirt—hundreds of short, unwanted brow hairs. It's been satisfying to pull them out, too.

My pubic hair has fallen out almost completely, and is showing no signs of coming back. I don't know.

Anyway, I start up chemo again on Monday, and that means the hair loss cycle is going to start again too. And I'll be happy about the legs and the moustache, and sad when the last brows and lashes give up the ghost completely.

Making Doctors Happy

I had my follow-up appointment today with Dr. Specht, follow-up to my CT scan of yesterday. The CT scan went fine in and of itself, once I finally got in for it. You see, when I woke up yesterday morning at 7:00am for my 8:00am scan, I was hungry, and since it was just a chest CT, I ate 20 grapes. Unfortunately, you're not supposed to eat anything before a chest CT (I knew this was true of the abdomen CT, and I'm not at all sure how I missed it for a chest CT)—not even grapes, not even green ones which are practically clear—because evidently any food distorts your stomach and can push other things (liver, lungs) out of position as well. And, as I found out recently, the stomach is actually really high up in the chest. Anyway, I had to wait until 10:00am to finally get my test done, so Mom and I just went back home, and I slept for another 45 minutes and then we went back to the clinic (I did not plan on spending a lot of time at the SCCA when I bought this house in 2000, but it has certainly worked out well for me). They got me in right away (I was shocked), and I actually felt like I could take a deeper breath and hold it more easily for this test than I could in the last one.

So back to today. Dr. Specht was about 30 minutes late for the appointment, but for some reason I didn't mind at all. I mean, of course I understood that she was busy, and that it was Friday afternoon and therefore she might be really busy, but more than that, it really just didn't bother me to wait. Ian and Mom were with me and we chatted. I don't know if they were nervous about the appointment, but I wasn't at all. I used to be all freaked out the night before a doctor's visit, not able to sleep well, jittery the next day, hardly able to go through the basest pleasantries with the doctor—"Hello," "Hello"—without jumping out of my skin, anxious for results. But last night and today weren't like that at all, and in fact none of the doctor's visits I've had this time around have been like that. It's all part of my (still sometimes surprising, even to me) new attitude about this disease and what it means in my life. Why worry about a doctor visit? It will be what it will be, and nothing I toss and turn about will matter in the least.

Anyway, it's good that I wasn't antsy, because Dr. Specht first asked me about my oxygen levels and how I'd been doing since I got home and we talked about stairs and eating and how amazed Mom was when I lifted myself out of the bath on the second day—she thought she would need to call 911 for some beefy stud to pull me out—and we took off my oxygen mask for awhile to test what I really needed (not a whole heck of a lot it turns out when I'm sitting still—like none at all).

When she finally turned to the CT results, she introduced them with something like "This is the best news I've gotten to deliver all week!" Yes, my CT looks good! There's still lots of cancer, of course, but the nodules have been steadily shrinking over the last month, even though I haven't been on chemo (although as you know I did restart Herceptin), even though I was in the hospital with pneumonia, even though things seemed to be changing only very slowly back at the beginning. Not only do my lungs look obviously better, my tumor marker blood test number has fallen, if not precipitously, at least significantly. All this makes Dr. Specht, in addition to very happy, very willing to keep me on the Taxol and Navelbine, because clearly they were doing good. So I start up chemo again on Monday, with very few changes from a month ago, except I no longer need lots of hydration (2 hours' worth!) because the tumor mass is smaller, and I am going to be taking a prophylactic dose of Bactrim, the sulfa drug I took as the cure for my pneumonia, just to be on the safe side.

I seem to have lost about 10 pounds since last seeing Dr. Specht in clinic, which puts me back where I was before all the dexamethazone, and my cheekbones are back!

And my doctor was happy!