Friday, January 30, 2009

Week Count

I thought I'd take a look at just how much chemotherapy has been pumped into my system since last spring—looks like quite a bit! I have had a total of 33 infusions, which is about 7 months. I didn't get infused for five weeks during the pneumonia recovery, so I've actually been at this whole healing thing for 8 months now. EIGHT MONTHS. Wow. With the occasional nausea, the change in eating habits, the unpredictable fatigue, and the occasional moodiness, it is a lot like pregnancy. We'll see though—am I human (9 months), equine (11 months), or squalus acanthius, otherwise known as the spiny dogfish (18-24 months)?

Friday, January 23, 2009

One, Two, One, Two, Perfect!

We went to Teatro ZinZanni on Wednesday night with our friends J&T. We had used a coupon for $25 off per person, which is quite a good deal, but even so someone had upgraded us to one of the expensive tables on the edge of the "stage", the table that was used in the show and also one of the tables from which "volunteers" were frequently chosen to help in the action. T was called up first, and looked quite fetching in her tall black boots and this awesome silk skirt in gray-to-black with a line of sparkly jet beads around it. Then our table was taken away, and my purse (which was on the floor under it), got dragged away as well. The "Security Guard," a teeny-tiny woman wearing a stick-on moustache and a long cloak, picked it up, caught my eye, then marched officially out of the room with my purse. Sometime later in the show, the "Maitre d'" made her give it back. In it I found a little sucker, like a Dum-Dum (plus all the things I'd put in it).

The security guard made eyes at me several times during the evening, then sometime during a lull in the show called out "Beauty Inspection. Lady!" and motioned me into the center of the room. I was wearing my normal wig and a green cocktail dress with straps, no sleeves, and the necklace my grandmother gave me after I asked to borrow it for my wedding—a lovely pendant with a deep green stone that my grandfather gave her 60 or 70 years ago. The security guard settled me in the center of the room and then did a visual inspection of my boobs, which were level with her eyes. "One, Two, One, Two, PERFECT!" she barked, and I cracked up. The timing of this particular part of the show, just after I was feeling bad about my appearance, was classic. She then stole my grandmother's necklace from me (it was, of course, returned soon after).

Correction on the tumor marker count: it was 68, not 60. Still, trending in the right direction. Also, just to split hairs, it started out at 1009, not 1008. Okay, I need a fact checker.

Thursday, January 22, 2009

Still Trending in the Right Direction

I saw Dr Specht this morning, and my counts are still trending in the right direction: 60 as of Tuesday, compared to 81 a month ago. And, because I like to see how far I've come, 1008 last May. We're continuing with the chemo for now, since I don't seem to be having too much trouble with toxicity. We are currently working under the assumption that, as we keep track of my iron levels and keep my blood healthy, my eye issues will resolve themselves (with the help of the drops, of course). We'll plan for another MUGS (heart health) in late spring, and probably another bone scan and chest CT in a couple months. My next brain MRI is 2 March.

Wednesday, January 21, 2009

Eye Update

I spent the morning in Northgate today at the Northwest Eye Surgical Clinic, getting lots and lots of uncomfortably bright eye scans. Whenever I'm going through an eye scan, such as the ones today where someone actually held my lids open while shining the sun deep into my brain, I always feel a bit like I'm being tortured. Then I think about how lucky I am that I am not, in fact, being tortured, and how awful torture is, and how glad I am that Obama is now the president.

Anyway, the scans, from what I could gather, didn't show anything too dreadful. I have a teeny (everything in the eye is teeny, actually) fluid pocket just under my center of focus (which shows up as just above my center of focus for the way it looks from my perspective) in my right eye. I also have some small capillary action which looks consistent to diabetic eye issues. I am not diabetic, but evidently being anemic can also cause these same sorts of symptoms, and I have certainly been having some problems keeping up my red blood count. Anyway, I have been prescribed a steroid eye drop for my right eye, to use for 3 weeks, and then I'll have another appointment. In the meantime, Dr Meyers is going to contact Dr Specht to make sure my iron levels are continuing to be addressed.

It would appear that, for the time being, I am going to continue to be a sighted individual.

You Can’t Really Take a Vacation From Yourself

It was really great to be in Hawaii. I loved the warmth, and the sun, and I didn't hate the wind or rain. I liked the opportunity to swim in the ocean whenever, even if that wasn't very often. I was ready to be home when we arrived back here, but it turns out I only wanted to be home for a day. The next day I was ready to be back at the beach. Alas . . .

It's interesting to travel with other people, when Ian and I have developed such a good dual traveling style. There's a lot of negotiation in travel, even if it's perfectly cordial and functional negotiation, and it's increased by each additional person. We shared a car, and there seems to be nothing in day-to-day life I have a harder time with than not having a car to myself, even though I got to go everywhere I could possibly have wanted to go. But still, I'm not used to having to check with other people about my plans (yes, this was why not driving last summer was such a hardship for me, waa waa). Nevertheless, the chance to spend time with loved ones who we don't see very often really made up for any minor inconveniences about total independence.

The part of the trip that got to me, eventually, around Thursday, was the part that I was really planning to leave at home: the cancer part. It's hard to be in an environment where physical beauty and physical fitness are expected, or assumed, and be bald, pale, pudgy, unusually sun-sensitive, and have only one boob. Oh, yes, I do have certain masking techniques—one, my wig, is obviously good if it completely fools me. I also have lots of hats and two different boobs—the standard one which I always wear in my bras, and a slightly sturdier, clear silicone "swim form", which fits into boob pockets in my swim suits. So yes, I can at least generally present the illusion of normalcy (and I would guess my pale pudginess probably keeps me from being "checked out" too closely—blessing in disguise that . . . although come to think of it, pudginess doesn't keep me from checking out other people . . . hmmm) . . . but I got tired of trying to keep up the illusion.

One way to deal with this "illusion fatigue" is, of course, to not try to keep it up. Go out on the beach with a bald head and one boob case flaccid against my chest. But that method seems very "in-your-face" to me. I don't want people to be looking at me with pity, or surprise, or really at all. Yes, it's self-centered of me to presume that they would, or that they'd care, but there you have it. I care.

So yeah, Thursday night I was sad, and really, really tired of this cancer stuff. I'd like to have my eyelashes back. I'd like to have my hair back. I know I'm not going to get my boob back, and I'm really okay with that. I think the illusion there works pretty well. But I'd like to have my weeks back, so I have the energy to get my form back. I miss riding twice a week. I miss rock climbing. I miss taking long walks (although, to be honest, what's holding me back from that these days is pretty much Hoover and his annoying leash aggression). I miss feeling athletic and toned and strong and fully capable.

Friday, January 9, 2009


Today at the clinic I was in one of the less desirable beds, one of the ones where space has been eked out over on the open floor plan end of the infusion floor, the end with all the chairs separated by only curtains. And yes, each chair still has its own TV. Anyway, there are four beds over there as well, and it's, well, cozy. When the infusion pump beeps at the bed next door, you hear it as if it were your own. And yes, charmingly, when the TV next door to you tells you over and over and over again that yes, folks, I'm afraid it's true, the Seattle Post Intelligencer is on the market and likely to go under in two months, you hear it as if it were on your own TV.

The thing is, the people in the next room over weren't actually watching the TV, because the man who was in for treatment was being diagnosed with pneumonia. The process took a bit of time, and lots of it was familiar. First, he said he had a bit a pain in his chest. Then he said it was only there when he coughed. The nurse asked how long he'd been coughing, and he said about two days. Then they checked his oxygen levels, and he was at 89 or 90 (you'll remember that that's low, if 95 is normal). Then he zoned out for a moment or two, and didn't hear some questions. That, too, has evidently been going on for a couple days (his daughter was with him). Then he was also feeling nauseas, and at one point he threw up the ham sandwich he'd eaten. Then news came that his doctor wanted him to go to the hospital, followed by a lot of talk about getting an ambulance and which service they would use and whatnot. A couple times they administered some medication that I dimly remember getting, which floods into your lungs and makes you cough, with the hope that you'll loosen what's happening there. He was also taken away for a chest X-ray at one point, which showed that he did have pneumonia. He then got an antibiotic drip. His temp was very high, around 102, so they tried to cool him down a bit. Eventually the ambulance arrived and he was taken away.

My nurse came in as his bed was being cleaned up for the next patient. "Now that that room is empty, could you turn off that TV?" I asked hopefully.

"Oh my gosh, YES," she said, and for the rest of my stay blessed less noise reigned.

Not Sure I Liked the Convenience, Actually

The SCCA now has free WiFi available for you while you infuse, and while part of me thinks this is an excellent idea, and also thinks finally!, another part of me is a little disappointed. I am undeniably tied to the internet and my email, and the clinic has been one of the few places I ever go where I'm sitting and can't use the internet, so I have to read. It's like a little mini-break from current events (okay, okay, I admit it, I'm not reading news on the internet. Frankly, I'm not sure what I'm doing, aside from seeing what else is new, and if anything new is out now. And how about now?). Nevertheless, I was happy to have the option of going online today, because we leave tomorrow and I still had things to do. And they are done now. But next time, I'm leaving my computer at home.

Thursday, January 8, 2009

Now Wasn’t That Easy?

Yesterday afternoon I drove to a local Bioscrip Pharmacy and picked up my monthly order of GCSF shots, the Neupogen that costs $275 per day. I am now only taking it five times per week instead of six, so that's only $1375 per week.

When I first started up the G shots, as they're called, late last spring, I did not realize until it was too late that my insurance company would not pay for them unless they came from this particular mail-order pharmacy called Bioscrip. Even though I was at the Seattle Cancer Care Alliance, and even though they had my first prescription filled and waiting for me, I could not take it away with me without paying about $7,000 out of pocket. Uniform, my health insurance company, did allow me to have the shot administered at the clinic, however, so every day for a week I took at minimum 45 minutes out of my day and went into the SCCA where someone else gave me the shot I've given myself for a total of about a year now (counting previous times), almost every day. Total cost to the insurance company for that? Almost $700 per dose.

I've been vaguely annoyed by the mail order system ever since. In part it's because there is, necessarily, a huge amount of packaging for the size of the drug, because the drug must remain refrigerated. So every month, we've received a box full of Styrofoam, with at least four frozen gel-packs inside. Now, the occasional extra gel-pack can be useful. The occasional extra 20 gel-packs were just annoying and, when we acquired a bunch of fish that needed our freezer space, wasteful. Not to mention the Styrofoam. Also, the syringes that they sent me weren't awful, per se, but they were a larger gauge than the ones from the SCCA. I mean, why not automatically go with the smallest gauge available??? I started simply buying syringes from the SCCA, out of my own pocket, rather than inject myself with the ones Bioscrip sent.

Then, about a month ago, my prescription went missing. Bioscrip does not require you to sign for your package, although they allow you to do so. Since I am not in the habit of sitting at home waiting for mail, particularly mail having to do with cancer, which is merely an aspect of my life and not my whole life, I chose not to sign for my packages. After all, nothing has ever been stolen off my front porch, in the almost nine years that I've lived here. Also, I found over the summer that occasionally the package was not delivered on the day I was told it would be.

Anyway, this shipment a month ago was supposed to be delivered on a Friday, and it wasn't. On Monday I called Bioscrip, and they said that, in fact, FedEx showed that they had delivered the package on Friday. I clearly did not have one; a trace was begun, and I pointed out that, even if the package were found, the drug, which needed to be refrigerated, was unlikely to still be viable, even with the overabundance of gel-packs. I then had to call Uniform and see if they could authorize an emergency pick-up by me of another set of the drug from a local pharmacy because I was clearly not going to get one from Bioscrip in time; this they did, and I had the pleasure of simply buying it from the SCCA when I was there for a treatment. I ultimately called Bioscrip back and let them know that things had worked out for the month (I also actually saw the FedEx driver a couple days later, and she swore she had delivered the package—of course she knew my house, she'd delivered there before—and whatnot). If someone had stolen it, I'm sure he or she was disappointed. It doesn't do anything you can tell on your own, without drawing your blood, except maybe give you bone pain. Fun.

The guy I talked to during my last call to Bioscrip pointed out that I could probably ask to sign for my packages, and that would make all of this better. I pointed out that I had a life other than sitting at home waiting all day for drugs, and that I was sorry a shipment got lost, but I was not going to change my habits. Then he said "How close are you to Broadway?"

And I said "Broadway Street, in Seattle?"

And he said "Yeah—we have a pharmacy there—maybe you could just pick up your prescription from the Seattle pharmacy."


And so, yesterday I drove to Broadway, which is not that far from my house, and picked up my G shots. And brought them home and put them in my fridge. And put no gel-packs in my freezer or the garbage, and no Styrofoam in a closet or a land fill. Already I feel better.

Wednesday, January 7, 2009

The Strength Seems to be Back

I was putting away the last of the Christmas things today, a U-Haul "Small" box of holiday books, and I managed to maneuver the box around the side of the heater and onto the storage Sten behind it without feeling stressed or strained, even though I was crouching and trying my best to keep from cutting my head open on the sharp edge of a duct. It is rather a tight space.

Totally Fooled by the Illusion

I had lunch downtown at the Nordstrom Café today, with my friend L. I was only two minutes past 12:30, which is pretty good considering that I got in the shower at 11:58. Of course, it really only takes me .03 seconds to do my hair.

After lunch I had to piddle (well, I had to before lunch, but I held off so I wouldn't be 7 minutes late), and when I was washing my hands, I saw what I thought was a gray hair. I looked closer, tilting my head to catch the light better, then remembered that, uh, no. I was wearing a wig.

My iPod Today . . .

has been shuffling the "Pop" genre. It's been an interesting mix of Michael Jackson, Neil Diamond, and Lily Allen.

Tuesday, January 6, 2009

A Gleam in My Eye

When I was in college, I would occasionally pull all-nighters, as most normal college students do. I think more than once I pulled two all-nighters in a row, which was really fun and a little psychedelic. I would find myself laughing out loud at some internal joke when no one else was around (or worse, when other people were around but no one else was with me), or just talking to myself in low tones. I would occasionally see things, too, out of the corners of my eyes, while walking across the ravine bridge on my way home from class, for instance.

About a week ago I started seeing something, or rather, I noticed that I was not seeing in the normal way. I had been getting plenty of sleep (although that was not true for much of December), and although I am keen to develop the aura-seeing skill, I have not yet done so, so I delved a little deeper into what I thought it might be. This was right around New Year's, and I didn't want to ruin our annual party with a trip to the ER (that was exciting enough last Memorial Day Weekend), so I didn't call my doctors. We did happen to have a neurosurgeon in the house, however, Ian's Peace Corps friend Dr M (4th year, I believe, resident at OHSU in Portland), and so I described my symptoms and asked him what he thought.

I had noticed that the phenomenon was only in my right eye, that I wasn't getting headaches (except for one migraine which was just the visual part and no pain, like 99% of the migraines I get and have gotten since I was 17), and that it was pretty minor—basically a tiny blurry spot just above my center of focus. I don't even notice it unless I'm doing something close like reading, so it took me a couple days to even be sure there was something to notice. Anyway, Dr M thought it sounded more visual than neurological, and recommended I see an eye doctor.

I'm afraid you're going to have to wait for the complete resolution of this mystery for perhaps a couple weeks, because my optometrist did see something, but didn't recognize what it was and so referred me to an eye surgery clinic where they have better optical imaging tools (that sounds like a fun morning). He didn't seem to think it was neurological, though, and in all other ways my eyes are completely healthy and behaving well. My prescription has barely changed in the last two years.

Here's my question: When Dr Jason asks, every two months when I see him, if I've noticed any differences in my sight, I've assumed he meant differences that might be explained by brain tumors. But perhaps the full-brain radiation somehow affected my eyeball? I just don't know. Also, I don't have any eyelashes at all anymore, and it turns out they have the pretty important job of not only looking fetching, but of keeping debris out of your eyes. Perhaps it's some sort of weird scar tissue from something that flew in?

My next appointment is in two weeks, because next week WE ARE GOING TO BE IN HAWAII. I am very excited for the prospect of being there, and very much going to have my leftover Ativan easily accessible for the flight across the Pacific.

I’m Glad it Didn’t Come to This

Several weeks ago my friend L forwarded this article to me, saying, "Wow, I am so glad for both Calin and Ian . . . ". You see, I suffered from C. diff over the summer, when I was in the hospital. It is evidently relatively easy to transfer to other people whose immune systems are compromised, and can be difficult to get rid of. Mine disappeared with a course of a drug called Flagyl. Phew.