The Day After the Day After

March 4, 2010 at 9:32 pm (Uncategorized)

I honestly don’t know how many months I’ve been getting chemotherapy infusions every-other week to treat my chronic, systemic sarcoidosis. I’m fairly certain that I’m fast approaching (and might have already passed) my two-year anniversary of getting Cytoxan twice a month. How should I mark my long and troubled relationship with this difficult drug? Certainly not with flowers. But should I bring it an offering of, say, cotton bandages—so that I’d be in keeping with traditional anniversary markers that call for cotton gifts on second anniversaries—the next time I’m due for chemo?

A friend asked me how it was possible that I didn’t know exactly how long I’ve been getting chemotherapy? It was a good question. A therapist might say that I am in deep denial about my illness and my treatments. I prefer to think that I’m forward-looking. Why spend time counting up the chemo months I’ve passed, when I have a future to plan and live? But I am not being altogether truthful if I say that my only feelings about chemo are positive and forward-looking.

I also have another problem that involves remembering and chemotherapy. However long I’ve been getting chemo every-other week—22, 23, or 25 months—one aspect of the treatment has not changed: I always feel my worst two days after getting the infusion. Here’s how the treatment unfolds virtually every time. I arrive at the Cancer Treatment Center on Tuesday morning, get my blood drawn, and see my physician. If my red and white blood cell counts aren’t too low, I get a bevy of IV drugs—some to prevent nausea, some to protect my bladder, some to keep me hydrated—before I get the hour-long infusion of Cytoxan. I am usually done by 3:00. At this time, I don’t feel too bad—maybe a little spacey from some of the anti-nausea medications, but definitely functional.

Knowing that this precious feeling of functionality won’t last long, I try to pack in as many activities with Jay and Andrew as I can. Andrew and I have our individual piano lessons in the early evening. I help with dinner preparations and eat dinner with Jay and Andrew. I can sometimes even summon up enough energy to oversee Andrew’s bedtime preparations, read him a passage from our current chapter book, and snuggle with him in his bed until he goes to sleep.

Once Andrew’s asleep, I fall into bed next to Jay, and become lost to the world for many hours. As I wrote yesterday, I usually sleep for fifteen, sixteen, or seventeen hours the night after I get chemo. I hardly stir, don’t dream, and wake up feeling bludgeoned instead of rested. I also feel nauseous. But on Wednesdays, I can control the sickly swirl in my gut with the combination of anti-emetics prescribed by the doctor. The real challenge is to rouse myself from my obliterating sleep so that I can swallow the pills.

Thursdays—of which today is an example—are the worst day in my cycle of getting chemotherapy every other week. I can’t keep anything in my stomach on Thursday mornings. I throw up the expensive prescription anti-emetic pills within minutes of swallowing them. Water, Gatorade, ginger ale, saltines, graham crackers, seltzer water…anything reputed to be soothing and good for an upset stomach comes right back up. Many months ago, Jay noticed how awful my post-chemo Thursdays were. He came with me to talk to the doctor about it. We learned that my violent response to chemo the day after the day after I got the infusion isn’t uncommon at all. So the doctor scheduled me for a return visit to the Cancer Treatment Center each Thursday after chemo. He said that IV anti-nausea medicines and a couple of liters of IV fluid would do the trick. These measures help a lot.

So that’s what I did today. My friend Leah shook me out of my chemo-death sleep and maneuvered me into the car. I shuffled into the Cancer Treatment Center, got hooked up to the fluids, only to have to jog to the bathroom to throw up the cup of tea I knew I shouldn’t have drunk that morning, but had gulped down nonetheless. It took two liters of water to rehydrate me and two bags of anti-nausea medicines to stop the internal heaving.

I’m not writing all this to get your pity. In part, I’m putting this stuff down on the page as part of my resolve to post more on Chronic Town—even when what I’m writing isn’t very literary or even reflective. But it’s true. And there must be some value in recording and trying to make sense of the weird shape and form of my days in Chronic Town.

The other reason I’m rambling about my every-other-Thursday schedule in all its nasty glory is because I realized something important as I slowly walked down the hall into the Cancer Treatment Center this afternoon. I’ve been in a committed, ongoing relationship with Cytoxan for a long time—so long, that I could give the damn drug a cotton gift to mark and symbolize my fidelity to it for two years (or sometime close to that). You would think that in all these past months, I would have recognized, learned, and planned for a constant pattern: I feel my worst the day after the day after I get chemo. When I started dating Jay, I learned in far fewer than two years that he doesn’t like to talk about important topics first thing in the morning, eats a lot of carrots with his lunch, and loves a good cop show on television. So why am I surprised anew every other Thursday? Why am I consistently having to re-learn that I don’t feel rested no matter how much sleep I get, can’t stop throwing up, and only feel better after getting IV medicines and fluids?

I’ve always believed that a little bit of denial is a healthy emotional response to difficult situations. Who could—or even want to, for that matter—walk around fully aware of the myriad ways illness (or any other life-changing event) has altered reality? Isn’t it actually psychologically better that I can’t remember the exact span of months I’ve been getting chemotherapy? A dollop of denial lets me zoom past my second anniversary with Cytoxan—a perfectly good date to ignore. But what of my stubborn refusal to recognize and plan for a pattern that takes place every other week? Why am I shocked each time the Thursday after chemo rolls around and I feel so awful? It’s taking a lot more than a dollop of denial to maintain this willful ignorance.

More significantly, my surprise and horror at how badly I feel the Thursdays after I get chemotherapy isn’t in keeping with my resolution to live as fully and as truly as I can within the strictures that sarcoidosis has created. My goal is to acknowledge the reality that I have a chronic and potentially fatal illness, and then maximize my life within this reality. I can’t strategize ways to make these Thursdays better, or celebrate surviving another Thursday if I willfully continue to “forget” about them between chemotherapy doses. I am dishonoring myself when I can’t remember that this day will be difficult.

Now that I have recognized an attitude problem, what should I do about it? As an initial step, I’ve decided to mark the day after the day after I get chemo in my calendar. I wrote in my Blackberry for my next chemo Thursday to expect a tough day, schedule IV fluids as early as possible, and plan childcare for that afternoon, so I won’t have to entertain Andrew after school on my worst day. Maybe these calendar reminders won’t revolutionize my lousy Thursdays, but as least I am stating for myself that I have a difficult day ahead—one that I will transcend with strength, planning, help, love, and (most likely) a little denial.

How about you? Do you have any difficult days (medical or otherwise) that you refuse to acknowledge on some level? Do you have any ideas for the rest of us on how to recognize that a tough day is ahead so that you can prepare for it—without wallowing in it?

6 Comments

  1. Sandra Ahten said,

    Reading your post, I was taken immediately to my 30 year refusal to prepare for and acknowledge pms. I have got to have chocolate. I pick a fight with Kevin. I have a scowl on my brow. I start my period. Oh! Of course. Whew what a relief. I’m not a binge-ing angry bitch after all.

    Staying in touch with our bodies is a challenge for many of us. The issues you speak of are on one hand much more complicated. But then are they really… or just magnified by the intensity of your situation.

    Thanks for posting. I love you.
    awww. I really do. How nice I was able to feel that and share it with you.
    xoxoxSandra

    • Rebecca Stanfel said,

      Dear Sandra,

      I am so pleased that you related to this entry. Yes! It is like PMS. It’s like being aware of hunger; it’s the same sort of body awareness (or lack of it) that years of yo-yo dieting can turn off.

      I agree with you that the issues I’m writing about are ones that we all deal with. This is why I believe that my book version of Chronic Town will sell well–if I can just write the darn thing. I’m not writing about foreign experiences. Even though some of the specifics (weird-sounding diseases and weirder-sounding medicines) aren’t universal, I think the struggle itself is universal. Like you said, it’s just the intensity of it that makes my case a little different. I’ve had all these issues thrown my way suddenly. But maybe the suddeness is a gift in itself. I’m good at putting off introspection, waiting for a better time to examine my thoughts and actions. But the sarcoidosis has given me no choice. I’ve had to think about this stuff NOW.

      Thanks for the love and the thoughtfulness. I’m sending lots of both right back atcha.

      xoxo
      Rebecca

  2. Barb said,

    Oh hell, I wallow too much, but then, I call up some mercy and try to rest. What do I do? Sometimes I call a friend to see if they have room to pray for me that day, sometimes I carve out some time, sometimes I sit and rock myself for five minutes. Often I look back and say, damn how did THAT surprise me AGAIN! I am so very grateful you are writing even on the day after. And honey, if you can write like this on the day after, you can write ANYTIME! Sending care…

    • Rebecca Stanfel said,

      Dear Barb,

      I love your ideas on how get through a difficult patch. And I totally relate to the sense of being caught off-guard AGAIN. I guess we need to keep learning (and re-learning and re-learning again) important lessons.

      Thanks for writing; thanks for the nice comments about my writing.

      xoxo
      Rebecca

  3. Sarah said,

    It took Bob telling me about my own cycle for me to admit that it WAS a cycle. The third day after my period starts I ALWAYS get a migraine. This isn’t something I don’t know, but how do I prepare? Honestly, I haven’t until recently. Now on day 1, I do something similar to your option – I don’t write it on my calendar, but I consciously recognize which day or days are going to be difficult. I am especially aware on that day, when my symptoms begin and I take my migraine medicine.

    The worst thing about it, Rebecca, is that the night before the migraine I find myself afraid to go to sleep for fear of waking up feeling like a sledgehammer is repeatedly hitting me on the head. I am in awe of you, if I fear one, two, three or four days of pain and an inability to fully function, how do you not crumble into a thousand pieces every other Wednesday night? Just know that you are an inspiration, Rebecca.

    • Rebecca Stanfel said,

      Dear Sarah,

      I really appreciate you reading my blog and writing a comment. I don’t feel inspirational, but your kind words warm my heart.

      I’m also glad that my writing about my experiences resonated with details in your life. As I wrote back to Sandra, I work on the blog and the book because I think the “lessons” I’m learning and my experiences are universal ones. Maybe sickness has made my journey a little more intense, but it’s the same journey–in this case, gaining knowledge about my body.

      Thanks again for reading and writing.

      Be well and be strong,
      Rebecca

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