Thursday, July 30, 2009

Evidently, I Lied.

This morning when the woman called me from that cancer organization, I told her I was currently undergoing chemotherapy. Well, as of my meeting with Dr Specht this afternoon, that is no longer true. My PET scan and my neck-to-pelvis CT both looked good. Which means that the CT showed sclerotic tissue in the bones (which is scar tissue and is consistent with healing) and nodules in the lungs that were still reducing in size—either scar tissue from the cancer, or scar tissue from the pneumonia; and the PET showed no signs of heightened glucose metabolism where we don't want it to be. The blood test results will be available next week.

In the past when I was on chemo, I continued it for 3 months after my numbers normalized and my scans showed nothing new; of course, that totaled six months of chemo. At the moment I am at . . . hold on a second and I'll consult a calendar . . . okay, it looks like I have had 52 weeks of chemo in the last 14 months. I missed several weeks when I was in the hospital, and I've missed another couple weeks to prepare for the PET scans, but that's a year's worth of weeks, anyway. That's a lot of toxin.

That amount of toxin has depleted a lot of my natural stores of immune-supporting vitamins and minerals, and I've pretty much not been taking any supplements during this time (although I do eat a largely organic diet, which hardly ever includes any sort of processed foods.). Vitamin C can interfere with the efficacy of chemotherapies, and the natural supports for specific, known issues—B-6 for neuropathy, calcium for bone strength, folic acid for I don't know what—is small and cautious. I am hoping to work with my Witch Doctor to build up a more complete internal support system, which Dr Specht is carefully supportive of. It is not her area of expertise, and she wants to be sure that anything I plan to do outside her jurisdiction is still discussed with her. I completely understand, and I completely agree.

That amount of toxin has also reduced the cancer load in my body to an invisible amount, at least for the measuring tools we have. As for my specific treatments with Dr Specht, for the foreseeable future I will having Herceptin infused at the clinic once every three weeks (well, I'll go next week, and then start the 3-week cycle after that so that I am cleared for my next trip to Jerome Creek, for two weeks in September.), with regular meetings with her, regular blood tests, and additional scans at various, relatively short, intervals. There is a new drug that I may begin, if my insurance approves it—it costs $4,000-$5,000 per month, so they may not. There is some belief that the new drug, being a smaller molecule than most chemos and Herceptin, will be able to cross the blood-brain barrier and help out in my head. Dr Specht said that lots of doctors hope this to be true; Jason does not believe it to be so. I figure, first I'll see if it's available to me, then I'll decide if I want to use it. It's oral, so I could take it at home at my convenience, but it has the unpleasant side-effect of diarrhea, which, as Dr Specht said when she first introduced the idea of this medication several weeks ago, will probably not be bad enough that I will need to be hospitalized. Sounds like fun.

Anyway, I am thrilled that I get to spend some time without the nausea (albeit minor), the fatigue (even though small), and the weekly hassle (the true bane) of chemotherapy. I almost don't really believe it—I still have a fridge full of expensive Neupogen (ooh—black market dealer!) and a stack of syringes next to my dining room table. I have several pills left in one of my bottles. And I suddenly have two Thursdays out of every three FREE!

What to do first???

Phone Call

I just received a phone call from the Cancer Fund of America. I wasn't going to answer it, because I'd just walked in the door from dropping off Ian at work and taking the dogs to swim in the bathwater lake, and I needed to make a breakfast (I've had coffee—iced, with raw whole milk—but not yet my yoghurt and fruit), but I did answer, and here is what the lady said:

"We are an organization dedicated to helping women with various types of cancer get the care and supplies that they need."

And I thought wow, someone is calling me up to offer me some assistance, after all these years and all these treatments and all this therapy. I felt touched, and was looking forward to saying that no, I didn't need anything, that I have all the support and assistance I could ever use, and please find someone who needed help.

She went on, reiterating the assistance they offered, then paused briefly, and I was about to explain that I am fine and taken care of, and she said "So will you be willing to look over some information that I send you in the mail, and make a donation to help someone with cancer?"

I thought what?!?. I said "I have been dealing with cancer myself for ten years. I am currently undergoing chemotherapy. All of the resources I have, I need, to keep myself alive and healthy. "

She said, "Well, it doesn't take much to help out, just a little bit. Can I send you the information?"

And I thought, did you not just hear me? "No," I said, "I am not in a position to help others in this way right now."

Perhaps I am being selfish, childish, unkind. Because I have been, and continue to be, very lucky in my care. However, I have spent probably a couple hundred thousand dollars of my own money, a couple million of insurance money, and ten years of my life helping people—not just me—with cancer. At the moment, I tend to feel that that, plus however much more I have in my future (which will always be an unknown), is enough.

Monday, July 27, 2009

Back in the Saddle

Funny how, in this case, that phrase, "back in the saddle," means exactly the opposite. Instead of getting to ride and hike today, I got to spend several hours in the SCCA clinic, celebrating my return to city life with a PET scan and a concurrent CT (results Thursday afternoon). It just feels like kind of an . . . indignity, I guess, to come back from 10 blessed days of freedom into a place of 24-hour white noise, static, light, and unavoidable social intervention, and then have to spend most of my first hours here at the clinic getting needles jabbed into my arm, and being pumped full of radioactive glucose (stay away, all you new and soon-to-be mothers I know) and "berry"-flavored barium ("berryum?"), all on an empty stomach.

I had stopped by the PCC last night when I got into town, before even coming home (I knew there was nothing breakfasty in the house and I was pretty sure I wouldn't have the energy to leave again once I got here). At home, there were several messages from the SCCA reminding me of my appointment today and asking me to call, because there were several preparation issues that they had to go over with me. Now, why not just LEAVE THAT INFORMATION ON THE VOICE MAIL when it becomes Friday afternoon, right before you leave for the day, and my appointment is Monday morning, and YOU HAVEN'T REACHED ME?

I, however, am responsible, so I stopped eating last night 12 hours before my appointment, just in case, and I called them this morning at 8:00am when they opened, to find out what the restrictions were. I tried to look up the test prep instructions last night on the SCCA website, and as far as I can see, it would be a clever place to post all that info, but there was nothing. Anyway, I found out that, unlike a pure CT where I am allowed to have black coffee and even food 3 hours before, I could have nothing but water. They were even leery of my prescriptions, so I just took the Keppra and figured I'd be fine for a day. I left my bellybutton ring in, even though there was some complaining about it last time, because it could distort the image. I pointed out that I have never once had any exam--MRI, CT, PET, EKG, EEG, or anything else I may be forgetting--with the bellybutton ring out, in 10 years, and so, wouldn't it be better for any potential distortion to have things be the same as always?

Anyway, I didn't actually get home to get my coffee (iced, because it's about 90 degrees here right now) until about 2:45pm. I had two (with only a minor meltdown when the milk spilled all over the counter because the dairy had filled the container too full), and then a huge, awesome bowl of fresh fruit (pear, cherries, and blueberries and raspberries that Marsh picked and gave me generous portions of last night), with whole-milk Greek yoghurt, honey, walnuts and cinnamon on it. I think I finished my first meal of the day around 4:00pm.

Fortunately, the dogs are still in recovery mode, and the fact that they have had virtually no attention from me at all today, after days and days of never being free of me, has not seemed to disturb them. They are both still sound asleep, apparently unaware that their usual city dining time came and went almost an hour ago.

Ian arrives at SeaTac at around 11pm tonight, so we'll all be together again soon.

Saturday, July 18, 2009

In Idaho

As it turned out, I was feeling slightly compromised yesterday morning from my new drugs, but not terribly so. I took my time packing things and organizing the house, and right before I loaded the car, I drove into Fremont to return a library book that would've cost over a dollar to return after I got home. I figured that, even though the drive totaled about 2 miles instead of 300, it would give me a good sense of how I felt operating a car. It turns out I felt fine—almost completely normal, and actually more normal than I felt walking around the house. As I told Alice, I thought I was maybe 15% impaired, so that put me about even—of course—with most of the population. So I loaded up the dogs and we got out of Dodge, turning onto Wallingford Ave at 2:00pm.

The trip was completely uneventful. I chose to drive the speed limit the entire way instead of pushing limits, and I set my cruise control at each exact speed on the dot. I was surprised to find what a pleasure it was, and how unstressful, to not be constantly wondering if I were going to get caught. Hmmm . . . new habit to be formed??? I was also pleased to see two or three of the cars that had passed me on the side of the road accepting speeding tickets as I drove by at a leisurely 65 mph. I saw a lot less traffic than usual while I was going the speed limit; the few cars I encountered were passing me, with the exception of an RV-trailer mess that pulled out in front of me in Washtucna. I was going 65 coming down the hill, no one behind me. He pulled out, in the bottom of the valley where highway 26 starts up the hill again, causing me to practically slam on my brakes. I had to get down to 20 to avoid hitting him, and as soon as I could pass I did, laying on my horn the entire time I was next to him. I mean, really.

We stopped twice, once for milkshakes and once for gas. The 4-Runner averaged a respectable 22.4 mpg, and we arrived in pretty close to 6 hours.

There are four dogs for me to play with this visit—two chocolate Labs (Spackle and Tessa, who used to belong to one of K's nieces, but was banned from Seattle after she nipped one too many toddlers), one Australian Shepherd (Sadie), and one Hoover. Sikem was left alone this morning, and he has been unhappily broadcasting his woes ever since. Later this afternoon when it's maybe not quite 90 degrees we'll have our first ride.

And, for the most part, I'll probably be posting on the Dilettante Traveler for this trip.

Thursday, July 16, 2009

Best of Both Worlds

Just got off the phone with Dr Jason, who said that my EEG was completely normal. Even though it was completely normal, he thought that the fact of the early MRI and the other few strange things I've reported recently were worth noting, if not worth a great deal of concern, and so he shared my story with a neuroscientist colleague of his. They agreed that, since I hadn't really had a problem with Keppra, the anti-seizure med, I should go back on, just as a precaution. I am fine with this.

The one problem with anti-seizure meds is that they can make you feel a bit dopey at first, which may get in the way of me leaving for Idaho, in my own car, under my own direction, tomorrow morning. I promised I would not drive while dopey. From what I remember last year, I felt pretty drunk and discombobulated for one evening last year, and then normal the next day and from then on. So I may be fine, and I may be on the road around 10 as initially planned. Anyway.

Tuesday, July 14, 2009

EEG Scheduled

I'll get my EEG at 8:00am tomorrow morning. It should take about two hours, depending on how quickly I fall asleep for the second part. I thought it would be a good idea to cancel my Woodinville appointments for tomorrow, even if I could arrive in time, so after the test I'll be returning home. Although I have just invited my mother out to lunch, and we do still have a meeting with our architect, which I moved up from 4 to 2. But I'll be in Seattle, at least. That's rest, right?

Monday, July 13, 2009

Possible Minor Seizure Activity

So I was scraping paint on the doors to Ian's workshop late this morning, prepping them to repaint to match our gorgeous repainting job that was just completed on the house, and I was feeling pretty darn good. I felt energetic and was pleased to have the strength and interest to do this small home improvement task. I called Ian and we talked briefly about what color the doors (French, with lots of windows) should be painted, and decided white to match the bulk of the trim, instead of navy blue (little trim) or green (doors on the main house). I got off the phone and realized that I was beginning a migraine—annoying, but I've had them enough that I wasn't really alarmed—and so I pretty much ignored the fact that I was seeing increasingly less well and continued scraping.

I finished the scraping about 10 minutes before my brother was due to join me for lunch, and went in to lie on the couch with my eyes closed. Deane arrived around the time that the visual part of the migraine was going away. As usual, there was no pain and virtually no nausea, and I felt that the fact that I could "feel" my stomach was as much related to the fact that I hadn't eaten much yet today (a latte and a peach) as any migraine activity. The thing was, though, that I was stupid.

I took Deane into my office to show him some pictures from our recent San Juans trip, and I had a really hard time remembering a lot of words for a lot of things I was showing him—basic things, like "campsite" and "composting toilet." I could eventually get most of the words out, but it was distressingly, alarmingly slow. It helped a bit that Deane kept talking about people we both know and whom neither of us could remember the names of—not just me—but it was still weird.

We walked down to the Essential Baking Company and ordered our lunch, then, while we were waiting for it to be delivered, all of a sudden my right hand went numb, like it did about 3 months ago out at Mom's. Frankly, combined with feeling a bit dopey, it made me very alarmed and so we left and walked back home. As soon as we were on the road, I called Ian, who told me that he had also been having numbness in his hands, and generally helped me to relax a little and not worry. By the time Deane and I reached home, my hand was normal and I could remember my (generally quite extensive and colorful, I like to think) vocabulary again.

I paged Dr Jason, who I had to talk to anyway about my last MRI, and told him what I'd experienced. He thought it sounded like it could be minor seizure activity, and recommended that I get an EEG this week to scan my brain activity. Based on what the EEG says, I may begin antiseizure meds again (I was on them for a few months last year). The main side-effect of antiseizure meds is a sort of mental fogginess, which in my experience faded after a couple days. My MRI continued to be good—that is, lesions showing no change or shrinking, so whatever was causing my experience today was probably not tumor-related. It may very likely be a radiation-related injury, though. The symptoms seem to match the symptoms of an occipital migraine (thanks, Witch Doctor) . . . but google also has some articles about how occipital seizures mimic the migraine aura.

Dr Jason promised to get me in for my EEG by Thursday this week, as I said that I was hoping to be in Idaho taking care of his parents' place by Friday. He did not say "Oh my gosh, you should definitely stay home!", which I take to be a good sign.

Nevertheless, I don't think I will drive anywhere this afternoon, after all.

Wednesday, July 1, 2009

Over at the Dilettante Traveler

I'll be posting from the DT for a couple posts here. However, if I don't get my first one in tonight, it'll be next Wednesday or Thursday until you hear anything. Rest assured, I'm having a good time.