One Not-So-Small Step

May 15, 2009 at 4:45 pm (Uncategorized)

It is three o’clock in the morning. I am typing as quietly as I can, since my husband Jay is snoring softly in the hotel bed a few feet from the desk, and my five-year old son, Andrew is snoring loudly from the unexpected second bedroom that is his space for our mini-vacation in Ennis, Montana.

Vacation? Hotel rooms? Family travel? If you’ve been reading my recent posts to Chronic Town you’ve likely gotten the idea that I am much more likely to be found in my own bed, either recovering from a twice monthly dose of chemotherapy (specifically Cytoxan) to treat my systemic sarcoidosis (particularly the neurological manifestation of the disease) or plagued by gastrointestinal issues that not only cause me tremendous pain (hence my unwanted night owl-dom) but also make traveling a few seconds beyond the reach of a toilet a risky proposition. But here I am, surrounded by snores in a strange room. I am happy to away from the routines of illness I have too quickly fallen into at home.

Truthfully, I’m surprised to be on this trip—my first family outing in well over a year. Of course, I’ve driven across town a few times with Jay and Andrew, but ever since I developed neurosarcoidosis back in November of 2007, I hadn’t—until yesterday—successfully spent more than about twenty minutes in a car. Some vile alchemy of motion acting on the inflamed parts of my brain and cranial nerves made car travel a trial at best. In the car, the worst of my neuroscaroidosis symptoms became severe enough that it seemed they should have left me alone and simply occupied the spare passenger seat. My vertigo intensified to the point that a few months ago, after driving about ninety minutes to see a doctor in Missoula, I opened the car door only to promptly fall over. My sarcoidosis-related vertigo must be a bit shy, because whenever it turns up, it also brings its best friend, the headache that I’ve nicknamed my “stroke headache” because it’s how I envision it must feel to have a blood clot burst in one’s brain. But yesterday, I didn’t even remotely encounter the evil neurological twins. I emerged from the car in Ennis looking and feeling like a normal person.

Well, mostly normal. I was also coming off one of the worst weeks of chemo I’ve ever had. Usually, the most unpleasant side effects of the Cytoxan—the constant nausea, the occasional vomiting, the fatigue that feels like radioactive worms have moved into my bones and sucked out very bit of energy and left me so tired that taking a shower is a hard day’s work—take a day or so to arrive. This past dose, though, hit me almost immediately, and it was fiercer and longer-lasting than any preceding it. When I feel so wretched and exhausted that the idea of opening the pill bottle containing my beloved Zofran (an anti-emetic) doesn’t seem worth the effort, I fall into what I imagine a prehistoric tar pit must have seemed to the dinosaurs that got trapped in them, leaving behind their well-preserved bones for paleontologists to reconstruct. Maybe the stuck dinosaurs felt as I did: depressed, hopeless, angry, self-pitying and self-centered to the point of unattractiveness. You know—generally pretty goopy.

Last week—maybe because my gastrointestinal problems don’t have the courtesy to abate while I’m laid low by chemo—I had what felt like a total emotional collapse. In the throes of this, I decided to stop the chemo immediately. And while I was at it, I thought to myself, I’ll stop the Remicade (the other infusion drug I take to suppresses TNF, the inflammatory agent of the immune system). I told no one of my plans, because speaking to anyone was too thoroughly enervating, and anyway, talking might make me feel better about my situation—and my self-pitying side wanted only to reflect obsessively on the sheer terribleness of my life. None of this pharmaceutical shit was making me better, I decided. In fact, the chemo made me worse. To hell with it. I wouldn’t even bother to explain myself to the kind doctors who have overseen my chemo and Remicade. Since no one seemed able to explain (let alone fix) my gastrointestinal disaster, I would return the courtesy and simply stop showing up for “treatment.” Treatment, hah!

Luckily, my tiredness lifted a little. Even better, my self-absorbed drama queen act no longer felt palatable. The thought of packing a suitcase no longer felt like scaling the slopes of a sheer cliff, and I figured that I could have a stomach ache and constant diarrhea just as well out of town as I could in my own house. I packed our stuff, crossed my fingers and toes that I wouldn’t end up reeling like a drunk somewhere between home and Ennis, and got into the car.

This was one of the smartest decisions I’ve ever made. Turns out that—at least in this instance—the old cliché about a change of scene doing wonders for one’s outlook is true. First of all, I have realized that the pharmaceutical shit I was hell-bent on stopping is actually helping my neurosarcoidosis. Not only was I able to travel by car for two hours with nary an unpleasant symptom, but I have been able to do things with my son and my husband. A few months ago, I couldn’t have walked around the block a few times. But today, we went to nearby Virginia City, a “living ghost town” (in the guide book’s parlance), and I spent hours on my feet exploring the old buildings, examining exhibits in the museum, and most importantly, engaging in a day-long pretend-fest with Andrew.

My son’s been taken with the idea of “bad cowboys” ever since he has spent two extended visits on my parents’ ranch and learned about the cattle-rustling Kilby brothers. He loves shooting cap guns on their remote land and learning one of the not-so-pretty side of Western settlement. Hearing me read in the guidebook about the vicious “road agents” who murdered and stole in Bannack and Virginia City (respectively the sites of the first and second significant gold strikes—and territorial capitols—of Montana), and then the vigilante posse who hunted down and hung the thugs (including Bannack’s sheriff), before succumbing to human nature and becoming a thuggish lot themselves, rekindled Andrew’s fascination with Western violence. All day long, we pretended to be the bad guys, as we roamed the nearly abandoned town. I would have thought my boy would have wanted to represent the forces of justice and moral uprightness. I assumed we would pretend to be the guys in the white cowboy hats (to use the lexicon of the old western movies and shows he’s also learned to love from his Grandma and Grandpa S.). But, no, we were pretending to be a band of brigands—the road agents. And not just any old common murdering and plundering road agents. Andrew was the worst of the worst for the day. He was Henry Plummer, the sheriff of Bannack, and leader of the vicious pack. He was the duplicitous, decidedly black-hatted character who begs to star in a Lone Ranger episode, pretending, as he did to represent the law, but was instead its enemy. Jay was “Clubfoot” George, one of Plummer’s henchmen (whose actual clubfoot is ghoulishly preserved and displayed in one of Virgina City’s two museums). And I was Charlie Banks, a lesser-known thug, but one who was still nonetheless hung by the Vigilantes. Our pretending was of a fairly mild sort, and mostly involved cackling outside any building we were about to enter and plotting to steal its gold. We talked in odd, pseudo-Southern accents that didn’t have any historical context, but somehow fit the mood.

Our day of mock banditry and fresh air worked a magic on Andrew, Jay, and me. Andrew was determined to hold my hand for most of the day, but he seemed less anxious that I might slip off and disappear for a few days (not a wholly unrealistic fear, since I do get swallowed by my bed every other week for chemo). Jay was cheerful, and kept repeating how great it was to “see new things together.” For the first time in a long time, I think, we each felt normal and we felt normal together. We were just another family succumbing to the lure of trinket shops; we were just another family wandering through a tourist-trap of a town, losing ourselves in the bloody history of its past. We were just another set of parents eating hamburgers and french fries and lecturing our kid on his table manners in a restaurant. The only drama was Andrew’s tantrum about his lollipop purchased at the “old time” candy store in Virginia City and the devilish (but historically-sourced) plots we formulated in front of the town’s storefronts. I wasn’t melodramatically renouncing my treatments; we weren’t having to deal with the drama of me being in the hospital; and until tonight, when my digestive system thoroughly renounced the hamburger and fries that constituted dinner, I forgot the drama of my stomach and simply took pain pills, wore Depends, and sprinted to various public restrooms.

Even though it snowed tonight in Ennis, we could tell that spring was coming. The surrounding fields are turning green, and they are speckled with calves and lambs, which look like little dots next to their mothers. We could sense the coming warmth in our skin. All of us could also sense a turning inside me. I am getting well. True, the cure is making me sicker in the short term, but I am getting well. 48 hours away and four cumulative hours in the car might seem like a small step to take. But for us, it was enormous. Bigger, even, than the hanging of Henry Plummer.

After our big day in Virginia City, we had another. On our way home, we stopped by the Madison Buffalo Jump (a cliff where various Native American tribes, in the days before they had horses, used to stampede herds of buffalo off a precipice so they could harvest meat, skin bones and organs at the bottom). The three of us (including me, the woman, who was falling over between the bed and the toilet a few months ago), climbed a mile and a half up the steep cliff and then a mile and a half down. Fortunately, Andrew deigned to stop pretending to be a road agent on our hike, and instead we took on the personae of Blackfeet hunters. Andrew was Crow Dog; Jay was Many Kills; and I (again) got stuck with the most boring name—Black Crow. But boring is just fine with me right now.

Postscript: I won’t claim that our adventure didn’t take its toll. Since our return, I’ve had a worsening of my intestinal problems and fatigue. I spent five hours at the infusion center today getting fluids and more IV prednisone. But, like boring, I’ll take it.

1 Comment

  1. Cathy Krohne said,

    I am so glad to hear you were able to enjoy a couple days outside of the illness zone. I completely understand how amazing that must have felt.

    I am now on oxygen at home overnight and with exertion and have started the clinical trial at NIH. I do not know if I am on a real drug or placebo, but I cut from 10 mgs pred to 8 last week, and now to 7 this week and so far so good.

    I learned a lot about where I am and why I feel like I do at NIH. It was not good news but a good explanation and I am finally validated with information that I have serious lung issues and that it is not just a matter of needing to excercise and lose weight as my pulmonologist here kept telling me.

    We were home a couple days, loaded up my oxygen concentrator and 50 foot hose … packed the camper… hooked up the boat and headed to the local lake for 4 days. I told my husband that I needed to do something “real” , something that did not make me feel old and sick and like damaged goods. Other than hooking up and sucking in some “air” now and then, it was a little like the old days. I enjoyed it immensely. Yes, it was harder climbing in and out of the boat on the trailer to put it in, but I loaded it on the trailer like a pro, even in the 20 mile an hour cross wind.

    I only walked from the campsite down to the lakeside a couple times with our dog, so she could swim. She is a marvel in the water…. watching her would bring a smile and a distraction to anyone in any condition. She is a dog-dolphin. No, I didn’t haul my chair, tackle box, fishing pole, book, favorite beverage and a snack, etc to the water’s edge and spend hours sitting there enjoying the view…. way to much energy to haul it all down and bring it all back. I would be exhausted.

    Yet, it was good medicine. I needed a day away from my obsession with the illness, the changes in my body and mind, and worrying that this is as good as it will ever be. I have hung a picture of an 83 year old woman who competes in slalom waterskiing… I may not live to 83, but I am going to work toward it. Who knows? Stranger things have happened in my life all ready.

    If that does not happen, at least I am sure to have more days of living; not sickness.

    You are “in there” Rebecca. You are still fighting to have those days of living… not being ill. Keep it up, girl. We may not have met, but I am proud of you.

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