on infusions

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This is not an easy entry for me to write.

On the 27th of January I called my neurologist. I’d been sick, secretly sick, sneakily sick, doing That Thing I Do, where I hide all of my symptoms as though they are some Top Secret government project. I am good at secrets.

I’d been losing the strength in the left side of my body, experiencing tingling and numbness through that entire side, unable to feel that side of my face. I went through periods where I couldn’t stand to have anything touch me, because everything hurt, but I kept moving, because I was busy: there was just too much happening to take time.

When I first realized I couldn’t feel the left side of my face, I was paused in traffic, listening to NPR at the red light on the corner of Charles and Baltimore St. Touching my face, I thought, This can’t be happening, then checked in the mirror, to see if everything still moved. When it did, I thought, I still have time, and let it go.

I called my neurologist. I thought he got dramatic about things. (I can’t even get into what an asshole I am.) He recommended I go on infusion therapy immediately. I don’t have time for that right now, I told him. I’m really busy. We just re- opened the shop. We’re still dealing with the repairs from the fire. I can’t take a month off. I’ll work through this. There isn’t time.

You may not have noticed this yet, but I’m a real idiot.

I didn’t have time.

I bought myself a few weeks, but that was it. By the time I went in to my neurologist’s office, it was inevitable, but he was nice enough not to give me an I- told- you- so. I would have more than deserved it. My left hand, my smart hand, was useless. My reflex tests were a joke. My balance was negligible. He started me on a five- day Solumedrol infusion series that weekend, and handed me a prescription for opioids. It was the first time I’d ever accepted one.

Infusion therapy is something I’ve been dreading since my diagnosis. I give myself a subcutaneous shot every night- something I’d once thought I’d never be able to do. This makes the people around me think I’m somehow completely calm about all needles. I’m not, though. I had an encounter with an under-experienced, overconfident nurse- in- training and ever since, I get queasy about IVs, every time. Infusion therapy required installing an IV port in my arm for the five- day period, which was a blessing of sorts; at least I wouldn’t need to have five different IV lines.

I tried to read about what it would be like online, but most of what I found was lists of potential side effects, or forums of people like me, asking questions and getting few answers. I took notes on what it was like for me each day, to try and record the experience for others, but of course it’s different for everyone.

Getting set up was strange and surreal: the home nursing center called and confirmed our details, then set up a time to first deliver all of the supplies, then to have the nurse come over. His name was Warren, and he would be training us on how to perform the infusion. That was a surprise: I had expected the nurse to come over daily to perform the infusion. The idea of doing it ourselves was both scary (what if we did it wrong!?) and calming (oh thank Bob, I don’t have to think up polite small talk to a stranger every morning, I can just relax and be sick).

Day one was simple: Warren came out to the house in the early afternoon. He was so awkward on the telephone; not rude, but abrupt and odd. I was already so nervous and frightened about beginning infusions that I began to make up stories about him in order to make myself feel better: Warren was probably a tea- drinker, a man who liked cats and hated the telephone, and was a little socially awkward, just like me. By the time Warren The Reality got to my door, he was also a Dr Who fan who enjoyed banjo music, ate coffee ice cream, and owned a shawl collared tweed sweater with leather elbow patches that he wore when he felt sniffly. None of these things may have been true of Warren The Reality, but it sure made it a lot easier for me to let him give me an IV.

It took four tries, because I have tiny, fussy veins. We ended up going in the crook of my right arm, which was unfortunate, but at least it wasn’t my hand. The failed IV attempts hurt worse than the actual IV line itself. The first infusion felt like nothing, really- just a cold sensation. It took about ninety minutes. After, I was cold- chilled from the inside, shivering, and dazed. I bundled up and once I stopped shivering, I seemed to be all right- just goofy and a little tired. Hungry, too. This isn’t so bad, I thought.

Once I seemed to settle, we went to Lowe’s to get appliances for the kitchen. It was terrible timing, but it needed to be done; the contractors needed them to finish the kitchen and we had been putting it off. I dopily, ditzily followed Sam through the aisles, wielding a broom he’d handed me for my balance.

I feel like a WIZARD,” I told him with pride, waving my broom about like a staff. (Later, he told me this didn’t seem too out of the norm, and I wondered about myself.)

I felt sleepy, happy, expansive: none of the manic energy I’d been told to expect, and definitely none of the irritability. I wasn’t the angry monster the internet told me I’d turn into: I loved everyone I saw. I was incredibly forgetful, though: I began to whisper, “Why are we doing this?” to Sam almost as soon as we begin to do anything. I wasn’t frightened, just calmly befuddled by our presence any time we entered a new location. We went home, and I curled up in my chair while we watched a movie. This isn’t too bad, I thought.

By day two, I was strangely sad, and wanted comfort without knowing why. I didn’t feel helpless, or hopeless, or depressed- I just wanted blankets, and cats, and hugs, and hot cocoa. I felt beaten down physically, and I took a long nap after my morning infusion. My skin began to take on that creepy, crêpe-y doll- like perfection that it has had before when I’d been on oral prednisone, and it disturbed me beyond measure. I tried to avoid mirrors.

By day three, I was exhausted. I slept almost constantly, and couldn’t imagine eating- all food was completely disgusting to me. I was shocked that I still didn’t experience the jolt of energy everyone writes about with Solumedrol, until my reading lead me to learn that if you let yourself go long enough, if you let yourself get sick enough, that it wouldn’t happen. Oh.

I was grateful that I missed out on the steroid rages- I’d been so afraid of that part. Solumedrol has a reputation for making people behave that way, and I’d been really worried. I didn’t want to be mean and horrible to the people I love. The idea of losing control is scary to me in the first place, but losing control and alienating my family and friends? I WILL PASS ON THAT, PLEASE. Luckily, strangely, the drug has had the opposite affect: I was warm and sleepy and I wanted to hug the entire world.

I do wish I had any of the energy at all, though. So many things I could have done with all that time at home: so many things I’d wanted to knit.

Days four and five were much more of the same: I just became more and more tired. As I got worse, though, things started to happen: I began to notice the strength in my left hand coming back, which was amazing and wonderful, and the burning flashes of pain on my left side decreased, too.

It’s a trade- off: I’m exhausted, dizzy, and immuno- suppressed, but my neurologic symptoms are hugely improved as the swelling in my brain is decreased. Now I wait for the side effects of the Solumedrol to wear off.

Since the infusions stopped, I’ve come into what my doctor calls The Crash: the post- steroid infusion period where my body re- adjusts. It’s all just waiting from here, and that’s the part I’m the worst at: patience. Part of it is waiting to see the results, which is like the worst Christmas anticipation ever: it’s a giant gift, sitting wrapped and beautiful under the tree, right in the middle of the sitting room, but I can’t open it yet, and it could be something amazing in that box, something wonderful like a fully functional me. It could be something crap, too: it could be a return to where we started, a complete failure, a meds change, moving to regular opioids, never fully regaining the strength in my good hand, using a wheelchair occasionally for fatigue. It could be that, too.

And so I am learning patience. I am learning to wait. I am learning to take it easy, because doing anything- pushing it at all- threatens this recovery. I am not good at this. I peek at work. I bother my husband a lot. He’s so good about it, but I’m a horrible bother-er: What’s happening? What’s going on? How’s this going? How’s that? Despite strict orders not to work, once I was awake through the day, I began to stalk our own updates and to read our forums on Ravelry. “You’re not supposed to be doing that,” Sam tells me. He makes his I am very disappointed face, the one he used to make at our daughter when she was very small and did something naughty. I feel abashed, but it is only a mild deterrent. I am meant to be avoiding stress, but I find the stress- free life to be stressful. Sam does not find this statement ironic or amusing. Sam is very serious about my recovery.

I am very serious about my recovery too, I suppose. It’s harder, being on the inside. More annoying. More frustrating. I am not built for waiting, for sitting, for rest. I assign myself tasks: meditation now, then sketching, then writing, then reading (first fiction, then non- fiction, then work- related blogs, etc).

I am working on getting better at recovery, but it’s a slow slog. I don’t know how to do this yet: I am still a beginner.

  One thought on “on infusions

  1. trillian42
    February 28, 2012 at 10:15 pm

    I don’t know if baby time would be more or less stress for you, but if you think it would help, Z and I are always up for a visit whenever you feel up to it.

    Big BIG hugs to you.

  2. February 28, 2012 at 11:36 pm

    You are one tough cookie, Sarah, hand in there. Thanks for sharing, your determination is inspirational.

  3. CJ
    February 29, 2012 at 12:45 am

    Sending you so much love during this extremely hard time. I had such a hard time recovering from surgery when my instructions were “relax & rest”. Big hugs & love. I hope your gift is a good one.

  4. Kathleen
    February 29, 2012 at 6:46 pm

    Awww…Sarah. Wishing you much Strength and a speedy recovery!

  5. Kathleen Deminski
    March 1, 2012 at 8:59 am

    Sending you bundles of love and smooshy warm thoughts dear Sarah!

  6. Hannah
    March 1, 2012 at 11:59 am

    I’m so sorry that you’re going through all of this. Sending you all my best for a complete recovery!

  7. March 7, 2012 at 12:34 pm

    Sending you support from Hampden, as I prepare to receive my first round of IVIg infusions in the hospital next week. Some day, when both our lives have smooth spots, I would love to meet up for a stitch’n’bitch.

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