Wednesday, June 30, 2010

Eighty Percent

Okay, the last time I wrote was just after my trip to the ER a couple weeks ago. There are a variety of reasons I experienced multiple aura and speech issues and intense pain with the migraine that hung out with me for about 36 hours, from what I can tell. First of all, it was 8 days after I'd begun my new chemotherapy. Second, it was 8 days after I'd stopped with the drug, Femara, that was taking the remaining estrogen out of my body, so I was beginning to have some slight hormonal issues again. Third, I've been eating very little sugar for most of the last few months, working on reducing my anxiety and some unexplained itchiness on my lower legs (it seems to be working), and the weekend before the ER experience we'd been to a wedding in Bellingham which, of course, involved lots of sweets, some alcohol, multiple events mostly with strangers, a lot of time in the car, and a night in a hotel with dogs—none of which are terribly relaxing things, although the wedding was beautiful and the dogs comported themselves reasonably well. I would say that the Rodeway Inn, with its use of quirky spelling to draw you in, is slightly less nice than the La Quinta (which draws you in with the hint of foreign Country Estate) where we've stayed before, but it was perfectly adequate and no one batted an eye at two 80-pound Labs pulling us joyously through the lobby. They love staying in hotels. And fourth, I'd spent the previous week working my ass off in the yard and around the house—six or more hours every day lifting and weedwhacking and mowing and bending and taking long dog walks and having a pretty intense jump lesson at the end of it all. Any number of these things could have thrown my alignment off so that C1—the first neck vertebra—decided to search for a better life and began a migration east, thus setting in motion the searing pain. I kept thinking to myself throughout the week: "Well, I feel okay today, so I may as well get as much done as I possibly can."
Well. I did get a lot done. But it took me all the following week to recover from my labors and the excruciating subsequent discomfort.
Several years ago, my mother told me of a tradition from, oh, somewhere in China, or maybe just somewhere in Asia (Calin wrote with typical American cultural sensitivity), where the secret to maintaining a healthy weight was to "eat until 80% full." This makes a lot of sense, because your body has the ability to take in food much faster than it can process it, and by the time you're feeling 100% full, you've got more than you actually need—and your body hasn't had a chance to tell you that. And so, eat to 80% full.
I realized last week that the same advice could—and at least in the case of the Mathewsons, from what I can tell, SHOULD—be applied to work. Eat until 80% full, work until 80% tired.
Ian is very good at working until 80% tired, then taking off to lie on the couch and read something interesting about the world. I am very good at eating until 80% full and thus maintaining a relatively stable size/weight over time. Our new goal is to share our complementary skills with each other, and each have a better life for the experience.
All that being said, our meeting with Dr Specht went very well yesterday. There were no scans to report on aside from my last MRI which was stable(=good); the meeting was mostly to see how I was tolerating the Xeloda. Aside from my melodramatic couple of days, it's been pretty much as expected: slight sensitivity in palms of hands and soles of feet (why is that?), a slight awareness of the drug starting its work about 5 minutes after I take it, mild nausea and anxiety about 1½ hours after, slight fatigue but nothing anyone else would notice. We're not really going to talk about adding Cytoxan at this time—I wanted to get through a full cycle of Xeloda without hitting the emergency room—and this may be all I need at the moment anyway.

Tuesday, June 15, 2010

So This Is What You “Migraine Sufferers” Have Been Whining About

Yesterday morning I got up and came out to the kitchen a bit after 8 am, ready to have some morning coffee and start the day. We've been offered this free mortgage refinance through our bank, which will lower our interest rate and therefore our monthly payments (the savings works out to be pretty much the exact amount I owe as my new co-pay for Xeloda, so that's something), and so I was going through the paperwork to make sure I had everything in order before sending off a fax. I eventually noticed the telltale sign (or, maybe more exactly in this case, the "tell-void" sign) of impending migraine activity. Well, whatever. I've had them before, and even though it's been several months now since the last one, I've always assumed I'll have them again. I went about my business preparing my protein shake (frozen banana, two other fruits, yoghurt, peanut butter, whey powder, rice milk, YUM) while the neurological issue progressed, then I had my shake, noticed the language difficulty for a short time, some mild buzzing along my right hand, and whatever. Went on with my day.

Well, not long after this, I noticed the blind spot building again. And with it some headache. I tried to lie on the couch and just doze, and I think I was able to achieve some relief. Then Hoover came and got me and insisted on lunch, so I woke up, and I was in the middle of one of the difficult speech times, and by this time my head was THROBBING. I have been extraordinarily lucky and have not had much pain ever, but my luck was clearly on vacation somewhere else yesterday. I fed the dogs, whimpering a little (me, not them), and, strangely cold, dragged myself into the guest room and curled up in the comforter there. The third time the dogs came in to get me to play with them—they'd had a boring morning of it since dad left—I woke up in the middle of one of the language issues again and tried to figure out how to reach Ian. I could remember the first six digits of his phone—206-321—but couldn't get beyond that. I went to my computer and opened an email to him, but I couldn't write anything longer than "come home. Help me." I eventually got an email off, but then I also recognized his number on our caller ID and was able to reach him by phone. It was, I thought, time for another visit to the emergency room.

I mean, one migraine is one thing. But already 3, the pain, and the nausea (which I treated Ian to—obliquely, on the other side of the closed bathroom door—soon after he arrived home), and the fact that I'd just begun a new chemo 8 days before, seemed like reasons enough to let a professional look at me.

I was whisked in right away, courtesy of "the worst headache I've ever experienced" and my history, given four heated blankets, then taken off for a blood draw and a CT. Dr Jason stopped by to say hi, as did an ER resident, and then the ER chief.

The upshot? Migraine. Dr Jason said the CT looked fine. The resident did my habitual neurological test, including the muscle resistance part where I inadvertently pushed him around with my massive strength, and the mental part where I identified not only the day and date, but the relatively obscure national holiday. "What's the day today?" asked Dr L. "June 14, 2010," I said. "It's Flag Day."

And the ER chief, bless him, said "All those symptoms you've experienced are very common migraine symptoms. Nevertheless, good for you got coming in the have it all checked out."

We had pizza for dinner, and just after 9 pm I noticed the 4th episode of the day starting up. No matter—I had an Ativan and 2 extra-strength Tylenols, went to bed and slept like a baby. Or, rather, from what I hear from my friends with babies, slept like an exhausted adult whose kid is staying over at Grammy's for the night. Or the summer.

Saturday, June 5, 2010

Okay, Yes, Pricey

The Xeloda, which is on a three-week cycle, costs $3,000 per cycle. I pay a $50 co-pay. I have to pick it up per cycle; they won't even give me enough for two cycles. This makes it cost $52,000 per year, basically Ian's salary. What I pay is $866 for the year.

Friday, June 4, 2010

Worked Out

In the, yes, baroque way of these things, I will be picking up my Xeloda prescription from the Capitol Hill branch of Bioscrip. This is not because it is convenient for me and I would much rather do it this way; it is that Bioscrip will not mail me this particular prescription. I have to pick it up. This information was received from two different SCCA employees this morning, a nurse and a pharmacist, after each spent several hours dealing with the rat's nest of phone trees and supervisors.

However, I thumb my nose at YOU, Bioscrip and Uniform, because you have inadvertently given me exactly what I want.


Thursday, June 3, 2010

Great Choice Except For That One Little Thing

Okay. So, my PET/CT showed that I stayed pretty much the same. Of the three spots of "marginal uptake" from the previous PET/CT, one was completely gone, one looked to be exactly the same, and the third seemed to be ever so slightly larger. I feel like the results pretty well mirrored the effort—very intense for some time, then a bit of petering out of commitment.

Since they hadn't gone away completely (note: Dr Specht was, I think, utterly amazed that they hadn't taken over the world), I decided to opt for the chemo choice, which in this case is going to be the drug Xeloda, which I will take from home, three tablets in the morning and three in the evening for 14 days on, then 7 days off, in a 3-week cycle.

That is, I will take it from home if I can ever get the prescription filled.

Like Neupogen, the hilariously expensive shots I had the pleasure of self-administering, Xeloda does not have a generic form, and is itself hilariously expensive (I'll get back to you with the number when I see it). This means that Uniform, our otherwise generous and supportive insurance company, insists for some convoluted reason that I order this medication only through Bioscrip, a mail-order pharmacy. It takes about 10 days for a prescription to clear through the mail-order pharmacy's trolls, and in the meantime I am sitting here without it. That's not all, however: Bioscrip actually has a Seattle store, on Capitol Hill by the hospitals. BUT THEY WON'T LET YOU USE IT.

There is a baroque process involving lots of phone calls to lots of increasingly superior workers whereby Uniform will allow a one-time "work around" that enables you to fill your prescription at a pharmacy convenient to you, which I had to invoke a couple years ago when a $7,000 box of their drugs failed to be delivered to me, and that is what we're trying to do right now with this new medication. The SCCA pharmacy, unfortunately, knows exactly what to do because they SEE THIS ALL THE TIME.

So, when a new medication is prescribed for me to be started the next morning because, in my case, I HAVE CANCER, Uniform and Bioscrip basically thumb their noses at me. If only I'd thought of that before saying no to the Fasolodex.

(except, of course—my secret weapon—Oleander and MMS maybe did keep things under control for awhile—so I can outwait YOU, big business health insurance!)

Tuesday, June 1, 2010

What I Learned With a Little Time Off, and Some Assistance From the Wilds of Idaho

Tomorrow is my PET/CT. In a way, it really is my PET/CT, more than any of the other ones have been, because it's the one I insisted on getting after spending a few months treating my cancer in my own way, before adding any new Western treatments. I should capitalize that: My Own Way. Back in March, at my last set of tests, new cancer was discovered in a variety of places, but at a low, low level. It was, in fact, the opportunity I had been wishing for: enough cancer to measure so that I could try some of my own things, but little enough that I could try my own things for a few months without putting myself in the position I was in two years ago.

Don't get me wrong or tell me to be careful what I wish for—I also wish to be entirely cancer free forever and ever. I wish that my full-time, 24/7 job would fire me, boot me out the door, let me paddle around in unemployment for awhile, then let me maybe put some serious thought into switching careers. But it's not going to do that—not in this lifetime—and so instead I accepted the opportunity it did offer me.

My Own Way has been very different this year than it was in 2007. In 2007, I got my boob sliced off and then I washed my hands of the whole matter. I attempted to move out of the country, and took that opportunity to cut ties with Western medicine. I pretty much figured that I could beat the whole thing with force of will.

We know how that turned out.

This year, I took supplements: MMS (the Miracle Mineral Solution) and oleander. I read information, I listened to people, and I knew that simply doing nothing was not an option. I have also been seeing a talk therapist (well, sometimes just talking over the phone), and doing my best to let out emotional and spiritual sludge and decay. I have also been trying to incorporate my cancer more into my understanding of my life. I know I've talked about my tapestry, but even so, I kept feeling that time at the clinic was a step out of my real life. An empty space that had no bearing on what I was really all about. I would lie in my scans feeling, if anything, vaguely inconvenienced, but usually it's my habit to simply lie still, occasionally wondering how I got to be in that tube. I'm trying to change that mindset, to allow my life and all its threads to blend together a little better.

And what I've come to, having had the freedom to explore My Own Plan, having had the time to manage that in the middle of everything else in my rich existence, and having had two weeks of utter joyful satisfaction in LIFE and what amazing things I can do with it, is this: It doesn't matter where the care comes from. The only important thing is that I get to continue, as long as possible, hauling bales of hay. Riding 4 miles out of my way, and falling into bed, so blissfully comfortable and muscle-fatigued that it's a singular pleasure to lie awake. Waterskiing. Visiting foreign lands. Writing. Cooking. Clipping the nails of our incomparable dogs. Sharing spur-of-the-moment projects with Ian. Tortilla soup. Working out the etymology of a word. Piano. Morning coffee. And an infinity more.

There is no value added by the simple fact of me choosing the drugs. I don't have to have that control.

And so, tomorrow: my PET/CT. To my surprise, I find myself completely indifferent to the results. The scan will show what it will show, and I will make a choice.

Such is life.