Facebook and Chronic Town

October 23, 2014 at 8:23 pm (Uncategorized) (, , , )

When you live in Chronic Town, Facebook can be a dangerous site to visit. I’m not talking about Facebook’s experiments on emotions, or its pernicious data tracking. What I mean is that trolling through all your friends’ posts about their busy and beautiful lives can feel gut-wrenching when you live with a chronic or serious illness.

In the past week, I’ve watched as friends and acquaintances on Facebook post photos or updates about long family hikes and century bike rides. There are pictures of gourmet meals prepared for family dinner night, dogs on long walks, and houses all spiffed up for parties. There are announcements about books being published, professional accomplishments, trips being taken, and photos of adorable children engaged in complicated-looking baking or arts and crafts projects.

These are lovely things to hear, and I am truly happy for my friends—and proud of them for the all the activities they are able to undertake and bring their children along on. I am also, dare I say it, more than a teensy bit jealous. Living with a chronic and sometimes debilitating illness means that I’m often not able to do everything I’d like—as a writer, mother, wife, and human being. And it’s painful sometimes to see others being able to live as I would like.

The past few weeks have been particularly difficult, perhaps because I’ve been feeling exhausted, sick, and extra broken for no discernable reason. I’ve been tempted at times to be brutally honest with my Facebook posts, and update everyone on what daily life in Chronic Town consists of some days—barely surviving. Here are some samples:

I made it to the dinner table three nights in a row this week! And I was able to cook a meal once in 14 days. (Attach photo of mediocre-looking meatloaf).

I slept thirteen hours last night, and still had to take a three hour nap. But I was able to drag myself out of bed when Andrew got home from school! (Attach photo of my extraordinary bedhead).

I’m down to getting two chemotherapy treatments a month! It sure is better than getting three, but it still really sucks. (Attach photo of IV bag).

I’m pretty sure my friend Martha will say that I’m comparing my insides to other people’s outsides, that everyone has rotten days (and even spates of them) but not everyone chooses to focus on this when they’re writing little snippets for wide public consumption. And she would be right.

But I think what is unique for those of us in Chronic Town is that we often lose the ability to be able to curate our lives for external consumption. Our daily lives can become so stripped down that we don’t have the option to select rosy, busy scenes for others to see, whilst holding within us and not sharing the sicker, darker moments. I may sound glum, but sometimes all I have are the sicker, darker moments. And at times like these, it can be jarring indeed to scroll through other people’s happy outsides.

I suppose an easy solution would be to give up Facebook. But I’m not going to do that. (In fact, as always, I’ll post a link to this blog entry from my Facebook account.) I like to know what’s going on with friends, family, and acquaintances. I like seeing them thrive. I’m not going to give into the impulses of my inner grinch, that childish piece of myself who feels a sting on bad days when reading about another’s accomplishments. I am, however, going to push myself to be as honest as I can be in my own Facebook posts. Rather than writing nothing on bad days—or only glossing a bad day with a positive spin—I want to try to share where I’m really at with my Facebook friends. For me, it’s a way to connect with a wide array of people from different facets of my life. Why not truly connect with them? Why not bring some of life in Chronic Town to the empire of Facebook?

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Wasps

June 13, 2014 at 5:15 pm (Uncategorized) (, , , , , )

Yesterday I felt as though I had wasps in my brain. I had at least dozen tasks on my mental to-do list, buzzing around and crashing into each other, each one a goal for my day—and my life. Work on book. Celebrate Andrew’s first day of summer vacation. Write a blog post. Write in journal. Rehab my healing broken ankles. Clean out Andrew’s room. Make Andrew clean out Andrew’s room. Wait, that doesn’t fit with celebrating his first day of summer vacation. Fold laundry. Plan dinner.

I forced myself to choose a single task. In reality, right now I have only the health and energy to accomplish one or two things each day. I decided I’d work on my book and let Andrew gorge himself on video games—his choice for how he wanted to launch his summer vacation. I sat, and the wasps revved their engines. The mounds of clutter in Andrew’s room thrummed at me, as did the undone stretches and exercises for my feet. I also had calls to make, friends I hadn’t talked to in weeks. It took all the self-will I could muster to sit in the damn chair and write a couple of hundred words (mediocre ones at that). I literally trembled from wanting to get up and throw myself at another task—and then another.

This wasn’t solely my writer’s procrastination, though I’d wager some of that was going on too. (Jay used to tease me that the house was never cleaner than when I was on deadline for a magazine piece.) No, the wasps were especially busy because I was trying to live a week’s worth of life in a day. Yesterday I was beginning to creep back to “normal” life after my monthly round of three days of infusions, two of which are chemotherapy medications. These treatments beat the hell out of me. I’m sick and tired after them. All I can do for about a week is hole up in bed, sleeping 16 hours a day. And then I emerge, a little more each day, back to my “good” days when I can bite off one or two tasks.

But it’s hard to creep back into life when there is so much living missed in a week. Here’s where the wasps come into play. They urge to me take on at once everything I had to put down for my week’s absence. They assure me that if I buzz loudly as I flit from task to task that somehow I can reconfigure the inalterable algebra of time, that by sheer willpower I can compress four weeks of book writing, parenting, laundry, and everything else into three weeks of consciousness.

One of the pitfalls of living in Chronic Town—of being afflicted with a serious, chronic illness—is to assume that everything hard or bitter in life stems from the illness. And it’s true that sarcoidosis has brought me its share of unique difficulties. But I don’t think the wasps fly and sting only in Chronic Town. My guess is that my overwhelmed sense of having too much to accomplish in too little time is universal, especially for those of us entering the middle years of our live, when we become increasingly acutely aware that possibilities, like time, aren’t limitless. Anxiety becomes a steadfast companion. With every item we check off our to-do list, four more rear up, undone. We want to do it all. We so desperately want to give our children, our husbands, our homes, our careers, the care and attention they deserve, and yet we cannot.

I think all we can do is to try our best, as trite as that sounds. There’s nothing to be done but to have faith in the choice we’ve made for where to fix our limited attention for this minute and devote ourselves to living it out. It’s impossibly hard, but it’s all we can do. That and tell the wasps to be quiet.

What do you do when the wasps start buzzing?

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Chemo and Sarcoidosis Brain—Or Is It Brane?

May 30, 2014 at 4:33 pm (Uncategorized) (, , , , , , , , )

When I was writing my last blog entry I got stuck on the verb “does.” As I went to type it, my mind seemed to empty itself of my past fifteen years as a professional writer, along with nearly forty years of reading books and writing papers all stuffed with the word “does.” I paused. Does. How the heck do you spell does? The pause lengthened to an uncomfortable minute or two, in which my mind grew even blanker. I typed “dos.” Was that right? It didn’t look like it. So I tried “dose.” “But that’s dose!” I thought indignantly.

By now the blankness had given way to full-fledged panic. “I can’t spell does! What is wrong with me? Am I losing my mind?” With tears in my eyes, I googled “dos,” the closest I could come to the elusive “does” and came up with a lot of pages about disc operating systems and the number two in Spanish. Through my frustration and fear, I thought to try “definition do.” At least I remembered that “does” is one of the conjugations of the verb “to do.” And there it was. Third person singular. D-o-e-s. I slapped my forehead and groaned. Of course. How could I have forgotten something so basic?

The answer to my question is chemo brain, which the Mayo Clinic helpfully defines as “a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment.” I’m not a cancer survivor or a cancer patient. I’m a resident of Chronic Town, living with sarcoidosis for the past decade. But I’ve sure been getting a lot of cancer drugs in the past few years. Since 2008, I’ve been on a cocktail of treatments that includes at least two chemotherapy agents. My brain is finally bearing witness to the rigors of this protocol.

I’ve been having memory problems for a few years. I simply cannot remember names when I’m introduced to new people. Minutes after shaking someone’s hand in introduction, her name evades me. Similarly, I can’t keep track of appointments anymore. I used to keep my calendar in my head. These days, I’m lucky if I can somehow remember to look at my calendar to see what I managed to write down in it. Even leaving it smack in the middle of the kitchen table for me to see first thing in the morning doesn’t always do the trick. I’ve had to put Jay in charge of keeping track of my doctor appointments. I don’t lose my car keys, but that’s because I literally run into the counter where we stow our keys when I walk into the house. But I do lose whole conversations with Jay, Andrew, and my friends. I’ve taken to schlepping a notebook around with my everywhere to write down details of chats as they happen, but the odds are good that when the moment arises, I’ll forget I have my notebook.

But lately, my memory and thinking problems have reached a whole new level. I can’t remember words. And one day, as I was poised to write a check, I could not conjure up what year it was. I stood there shuffling my feet. Was it 2012? That didn’t sound right, but neither did 2013 or 2014? There was no way it was already 2014, right? After a few agonizing minutes of this, I somehow thought to look at my cell phone, which handily displays the date. It was 2014. Wow.

I’ve talked to my doctors about these memory chasms (lapses feels too small a word to convey the level of terror they bring with them). It’s all perfectly normal, the white coats reassure me. But that doesn’t make me feel better when I’m unable to place myself correctly in time and remember words I learned how to spell in first grade. Andrew tried to console me when I told Jay and him about my “does” debacle. “It’s OK Mom. The other day I spelled “know” as “now,” he said sweetly. But it’s different. It’s so different. Words are my identity. I belong to a tribe of wordsmiths, and to suddenly lose the most basic of our basic building blocks feels threatening and horrifying. Who will I be if I can no longer summon the words to write?

My doctors say most of my cognitive issues will resolve once I’ve been off chemo for a while. When will this be? Unlike most cancer patients who follow a protocol, I’ve been put on three chemotherapy drugs indefinitely. Hopefully, the Acthar I just started (thanks to the generous folks at NORD) will allow me to get a break from at least one of these toxic treatments—but that’s assuming the Acthar works (which we’ll hopefully get at least a preliminary sense of in a couple months).

So what can I do? I’m trying humor. I told the woeful tale of “does” as a joke to Jay and Andrew. How else can I present it? We deal with enough crappy side effects from my disease that manufacturing a crisis about how to spell “does” doesn’t feel fair to any of us. I also tell myself that every one of us alive is in Chronic Town. As we get older, our memories fade a little. It’s normal. It’s natural. I’m not being singled out for persecution. And there’s not much to do about it but deal with it, right?

I’m contemplating a chain of post-it notes, reminding me to look somewhere else to be reminded of something important. I can stick post-it notes on the bathroom mirror, the coffee pot, and my forehead to prod me to look in my calendar so I can remember that I have yoga on Thursday evening and a coffee date on Friday. If more basic words continue to fail, I’ll start a file of them on my computer, along with the year. Now, if I could just remember that I have the file, I’ll be in business.

Have you ever forgotten anything terrifyingly basic? What are your strategies for dealing with forgetting?

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Miraculous

May 20, 2014 at 9:01 pm (Uncategorized) (, , , , , , , , , , )

It feels like a miracle has happened to me.

When I last wrote, I was stuck between good and bad news. The sarcoidosis guru I see in Ohio recommended a promising new treatment for me. But the plan managers for my prescription drug plan refused to cover the expensive medication called Acthar. Since then, we went through two rounds of appeals with the plan managers, and got a resounding “NO” for our efforts. In fact, the bureaucrats wouldn’t even talk to my doctor. A “licensed pharmacist” made the decision that I should try IV prednisone—as if I haven’t endured numerous rounds of that over the past decade.

We had one round of appeals left. Unfortunately, the plan managers told us that even if we somehow convinced them to approve Acthar, they could opt to classify it in their pricing scheme so that we would have to pay for half the medication – which wouldn’t even count toward our annual out-of-pocket maximum. At somewhere around $30,000 a vial, such a victory over the plan managers would be a pyrrhic one. There is no way we could afford one month of such “coverage.”

I think I stopped taking real breaths after Jay got off the phone with the plan folks and told me the news. For the first time in many years, my doctor had a treatment that he thought might actually help me. After 3 months of Acthar, I could at least (hopefully) get a break from Cytoxan, the chemotherapy infusion I get every month. It felt like just as I heard the first good news in quite a while, faceless and nameless bureaucrats were snatching it away.

Here’s where the miracle comes in. The sarcoidosis guru put me in touch with a non-profit called NORD– National Organization for Rare Diseases (https://www.rarediseases.org/). In addition to providing advocacy and education for those affected with rare diseases, including sarcoidosis, NORD offers patient assistance programs. One such program helps patients obtain so-called “orphan drugs”—medications that treat rare diseases and so are not manufactured in large quantities and are often extremely expensive—like Acthar. I filled out an application, crossed my fingers, and kept holding my breath.

I found out yesterday that NORD approved me for full assistance so that I can obtain a 9-months’ supply of Acthar at no cost. I am overwhelmed with gratitude to NORD and its donors who made this possible. I can’t put into words how grateful and we relieved we are. I finally took a real breath. We can postpone our battle royale with the plan manager. I can try out this new treatment, and maybe get a break from the awful side effects of the Cytoxan. It brings tears to my eyes every time I think about it. All I can say and feel is “thank you, thank you, thank you.”

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