Corner Turned

I’ve heard from doctors and several people who have been through autologous stem cell transplants that once your cells engraft, you immediately start to feel better, as if someone’s flipped a switch.

At 5 am yesterday morning, I woke up and knew I was on my way to getting better. Granted, I woke up in pain. I want to tell someone, but my boyfriend is squeamish. So, if you get the heebie-jeebies, skip the next two paragraphs.

I woke up because my throat was burning. I coughed up the usual assortment of whatevers (stop me if I’m getting too technical), as well as something new and white. The next time I saw the nurse, I asked him about it. “Did you save it for me?” he asked.

Of course I had. After he examined it, he asked me if my throat hurt, and when I replied that it did, he simply said, “It’s just the lining of your esophagus.” That’s kind of what I was worried about, but he’d been so calm about this fact, that I decided I shouldn’t be concerned. This whole time, everyone’s been describing the radiation as causing an internal sunburn, so it makes sense that the healing process involves the old, burned lining to slough off and then come back fresh.

My stomach has been making odd noises throughout this whole experience, especially during this week of not eating. One day it sounded like a grumpy tiki god or a mummy rising from the dead—a low rumble of discontent. But yesterday it started a new strategy and sounded just like a mewling, starving kitten. OK, I get it. We’ll try to have some tea today. But I can’t promise any solids.

Yesterday’s nurse just came in to adjust my beeping machine and he asked about my throat. I feel so much better. He said he could tell just because I seemed more comfortable. The throat/not swallowing has been the worst side effect for me—not bad, in the grand scheme of things. The side effects they can’t eliminate, they try to control the best they can. It’s taken a lot of morphine, magic mouthwash, Biotene and acid reflux medication to get me through this mucositis and burning from the radiation.

So far today, I’ve managed two sips of water. And I took the three sips of Carafate without getting nauseated. It was hard for me to take the drug to stop my upset stomach because I couldn’t swallow even the little drops of pink liquid. So my throat and stomach reached an impasse. Even now, as I celebrate my earlier victory of Carafate, a new one has appeared to taunt me. I could get down only one sip this time. Little victories and losses.

Day One

If my transplant day was Day Zero, then it’s Day One today.  My transplant yesterday was, as predicted, uneventful—a good thing. Mostly, I slept yesterday.

In the morning, after a shower and breakfast, I was given the Benadryl and Ativan through my IV, so I immediately felt warm and sleepy. I managed to have a conversation with my boyfriend and the social worker before the doctors and nurses came in to do the procedure.

I was hooked up to oxygen for an extra boost, and one of the nurse practitioners injected my stem cells, vial by vial, into my chest catheter. Meanwhile, a nurse held fresh lemons under my nose and squeezed them. This is to combat the smell of the preservatives used for the stem cells. The lemons, combined with the red color of the stem cell vials, made me think about Bloody Marys.

I was warned that the side effect of the preservatives would be a tickle in the throat, and that was the worst part. It’s a persistent, annoying tickle, but I didn’t experience much nausea. Mostly, I felt weird and uncomfortable and wanted it to be over, even though the procedure was mercifully short. I now see the wisdom of the Ativan, as I recognized my old pre-panic feelings roiling beneath the surface.

Overall, it went by very quickly and as pleasantly as possible, despite the unpleasant throat tickle that made me cough. I had four vials overall of six million cells. I also was battling with extreme sleepiness, so I was torn between wanting to pass out and needing to get my mind off my panic by talking to the people who were trying to engage my attention with talk of cats and the weirdness that is the Ohio State-Michigan rivalry.

After the transplant, I slept most of the day, waking up only briefly when someone would come in to do something to my IV pump or check my vitals. Around 5, I woke up to a package that contained a plush Grumpy Cat, a big hit today with the doctors. I catch at least one person per day examining my plush narwhal.

narwhal

Today, I’m dealing with just a few side effects of the radiation and chemotherapy. The worst part is still the violence going on in my esophagus and the painful burps, as well as a slight burning, but I was told that’s expected. I’m taking a lot of things for indigestion, so I think everything that can be done to ease the effects is in place, but it’s the mechanics of the indigestion that I can still feel. My throat has started to hurt, and my mouth also hurts, though the sores haven’t happened yet.

At night, with not much outside stimulation, my dreams are strange, pulling from random bits of subconscious. I often wake up in the middle of the night, feeling as if I have something important to do, but I don’t, so I just get up and use the Biotene mouthwash.

For the mouth pain, I was given a weird clear gel that tasted like a black jellybean, but not as sweet, to numb my mouth a bit. And I’m supposed to get a pain pump in the coming days. I feel constantly thirsty. Most of my medications have been switched to intravenous ones so I don’t have to swallow pills.

I’m still on the Lovenox blood thinners for my pulmonary embolism, but I’m also receiving platelets as a precaution to avoid bleeding in the lungs. I’ve been having the nurses give me the Lovenox in the arms, since I’ll have about four months of blood thinners left when I get out of here, and my poor belly is already so bruised.

I’m warned that I might not eat for awhile, but I expect to try to eat for as long as I can. Today, I overcame my throat discomfort to eat some Nutella crepes. I’ve been sticking to soups and soft foods when I can, so unless/until the nausea sets in, or the mouth sores get to be too much, I think I’ll be eating. Even if it’s an ice cream dinner.

Other than that, I’m just trying to figure out how to relax. I signed off of work projects for a while, and I’m a little at a loss for what to do with myself. I’d like to read, and I have a bunch of great books lined up on my Kindle. I have a season of Game of Thrones and Boardwalk Empire to watch. I just feel weird watching TV in the middle of the day. Maybe if it were gray and rainy out, I’d feel better about it.  I have a cat puzzle. I still have scarves to make and yarn to use up.

Now that I finally have time, I’m at a loss for what to do with it.

Back at the Hospital

Yesterday, I felt great. I woke up early, got a bunch of stuff done and felt ready to conquer the world, albeit from my bed. I even did yoga for a few days this week. In the afternoon, I felt a little sleepy, so I took a nap. Then I took another nap. By the time I woke up at 6, I had the chills and felt a little achey.

I took my temperature and it was 100, then 101, so I called the doctor. I had hoped he would just tell me to take more of the antibiotics I had on hand, but the doctor wanted me to come in to urgent care with the possibility of being admitted to the hospital since my white blood cell count is low and I’m at high risk for infection. So I packed up my bags and we headed to the hospital, about a week and a half sooner than I wanted to return.

My white blood cell count was 1 on Monday and now it’s hovering around 0, meaning I am neutropenic and have no immune system to speak of. It’s what they had expected after the augmented ICE, and the shot I was given on Friday hasn’t kicked my white blood cell count back up for some reason.

The good news is that they didn’t detect any virus activity, though I’ve been sniffly the past few days. After waiting in Urgent Care, I finally got an X-ray and got to my room around 1:30 am. I tried to keep in mind it’s always better to wait in Urgent Care than being rushed in as an emergency. My boyfriend offered to stay, but sleeping on an uncomfortable pull-out chair among all-night beeping machines is no way to get proper rest. I sent him home.

This morning, I got the verdict: I probably won’t go home until Sunday, or at least until my blood counts are back up. They don’t want to send me home just to have me return. This is a pretty common thing after augmented ICE chemotherapy, so I just have to bide my time until I can return home. Although I’ll be turning around and coming back here next Friday if everything goes as planned for my second round of augmented ICE.

The hospital is full of surprises. When I took a shower, I came back to find my bed made. It was nice, like going to the bathroom at a restaurant and finding your napkin folded upon your return. Later on, the nurse came in with a Lovenox blood thinner shot and I remembered that it stings a little bit, so that was a less fun surprise.

I like this room better — the bathroom is probably one square foot bigger and it makes all the difference. Also, I’m at a slightly different angle than before — the A side of the room versus the B side, so I have a nice view of the Queensboro bridge. But as I told a friend who stopped by earlier, I think I’m on a less fun floor. My last floor when I was here for the ICE had an activity center with movies, crafts and live entertainment. This floor is quieter, and I don’t think they’re as enthused to have me walk around, since I’m at risk for catching everything. That’s OK — I like my quieter bit of real estate.

The good news is that I will have the opportunity to try the Maryland crabcake and the Nutella and banana crepes during my stay. There’s also a make-your-own sandwich option, and I was going to try to get three fillings and four cheeses on one sandwich or see if the kitchen would make a giant Dagwood, but now I can space out my sandwiches.

I’m on a low microbial diet to avoid any potential pathogens, because of my suppressed immune system. It’s pretty much what I’ve been following while eating outside of my home during chemo: No deli meats or cold cuts, no raw fish and no raw fruits and vegetables (except for self-contained bananas and oranges).

I’m also not supposed to have mold-ripened cheeses, and while I haven’t had any raw cheeses for months, I think I’ve been living dangerously and eating Brie, goat and blue cheese. (Oops.) I’m also apparently not supposed to have frozen yogurt, but it’s not the ’90s, so I should be OK. (People keep telling me that frozen yogurt is making a comeback but I don’t believe it.)

For now, I bide my time and hope for an uneventful stay. I still feel a little sniffly. The internet connection here has been a little spotty, and this prevented me from taking an important Zimbio quiz on which ’90s boyfriend I would have. I will do my best to make it to Sunday in such conditions.

Rushing to a Stop

As always, I am struggling between ambition and laziness. I usually resolve this by sitting all the way back on my pillows and typing with my keyboard on my knees. But since the ABVD and ICE, my circulation hasn’t been as great, so my hands go numb in this position.

All night I tried to resolve the nonstop, self-imposed chaos that I’d subjected myself to before the hospital stay. Work or work out or have fun, but always stay as busy as possible.

What happens when you don’t stop then have to stop all at once? A cliché. Now that my body has come to a screeching halt, my mind spins aimlessly like a top landing on incongruous topics.  One night in the hospital, in a semi-sleep state, the murders from my mystery book haunted me and it fell to me to solve them. What was the connection between all these killings? I fretted, as I tossed and turned. How would I catch the killer?

Not even a seemingly innocuous book about food entrepreneurs provided relief. All that night, I wrestled with questions like: What is the valuable lesson a food entrepreneur can take away from this chapter? What’s the business takeaway here?

And somehow, in my dreams, I also had to figure out my own medications and cure my own disease. Everything was on my shoulders for my busy mind to solve.

I’d wake up, thinking I had the key to my book dilemmas or medication schedule only to be confused. Not even fully realizing that it wasn’t my problem to solve, I’d slip into another restless sleep, rushing to solve another problem.

All last night, I had similar dreams. I’m worried about the “chemo brain” or brain fog that I’ve heard accompanies these treatments. That’s what keeps me from doing more. Sending out misspelled, crazy missives. Or half-formed thoughts, like the ones in my dreams, darting away before I can get hold of them.

Mostly, I feel a little sleepy all the time. Like I could just lie down anytime and take a nap. The good thing is that I can. But it often doesn’t mesh. At times, it feels as if it’s my brain that’s sleepy and my body that feels wide awake, as it should after unlimited sleep. Yet it’s my body that’s actually taking it easy, as my blood counts drop and the chemo hits. My mind races around, trying to finish up last minute chores and assignments.

My digestive system is similarly not in sync with itself, but this is on purpose. From what I understand about these anti-nausea drugs, they work in your brain, not in your stomach. I could be wrong, but according to what I’ve heard, my stomach lining is well aware of the chemo and would be reacting accordingly. But the drugs tell the brain not to worry and in effect, not to be nauseated. (Essentially, that makes my stomach look unfairly like a liar.)

To be safe, I’ve been sticking with mild foods like oatmeal and soup. But another part of me — the unwise part — wants a big bacon cheeseburger. Every now and then, I get a little pang from my stomach, letting me know that, while everything is under control, don’t push my luck.

So I find myself on this hiatus of sorts, where I do what I can and what I’m up for. I can resume being a prolific Facebook poster, for instance.

It’s somewhat of a relief to wake up and not have a looming list of to-dos. I wouldn’t suggest cancer as an excuse for a staycation or a reason to take it easy if you can find another way. But I think that I haven’t taken some time for myself since before I lost my job this summer. Or before I found out about the cancer. I can’t even tell you the last time I truly relaxed without something else nagging me.

As I slip into a cat-like existence of naps and nothing, I still have to learn to let go of everything I felt I should be doing. When I get a good night’s sleep, not peppered by frantic problems, real and imagined, then I’ll be successful.

Tired

I just took a nap for almost three hours. One minute, I was at the grocery store having a discussion about when mangoes are ripe and enthusiastically lobbying for the purchase of a baby watermelon, and the next minute, I was bone tired.

I knew this would happen sometimes. I napped yesterday as well. Chemo makes you tired. Mostly, I’m tired of having cancer.

I try to stay upbeat, but every now and then, I slip headlong into self-pity and a litany of complaints. I’m tired of looking for jobs. I’m tired of hustling for freelance work. My big toenails looks like this and feel like they’re about to fall off. Random stuff hurts. I can’t stay in the sun for very long before getting burnt, even with sunscreen. My fingers are numb.

I miss eating the random samples at the grocery store that everyone may or may not have sneezed upon. One of the worst parts about my compromised immune system is curbing my desire to eat food of questionable origins. And food that falls on the floor is no longer viable.

I used to invoke the five-second rule a lot. In fact, years ago, I found myself explaining the five-second rule to a member of the maintenance crew at the building where I used to work. He had witnessed me drop a French fry on the floor, then pick it up and put it in my mouth. As I rose from picking up my fallen fry, my eyes met the horrified gaze of the maintenance man. The fact that it was not even my fry, but that of an editor who I didn’t think would miss one, probably added to his confusion.

When I finished chewing (I have some manners), I explained, “Five-second rule.” I was met with a blank stare. He had never heard of it, so I had to explain how, if you eat something within five seconds of it falling on the floor, it doesn’t count. The flawed logic is that germs don’t have time to climb aboard whatever you’ve dropped. Mostly, however, the small time frame usually ensures that someone hasn’t seen you commit this questionable social behavior, so it’s like it never happened.

A few months later, when I found an article clipped from the newspaper about the 5-second rule atop my work inbox, I knew immediately who it was from and smiled. It stayed up on my cubicle bulletin board for a long time.

So you can imagine how it pains me to look at fallen comestibles, and have to throw them away.

The exception was last night, when I reached for my phone and heard something fall off my nightstand. I heard many tiny things rolling around. This was after yesterday’s nap, so I was a little groggy. I looked over the edge of the bed to see my Docusate “dolls” rolling around my (thankfully clean) bedroom floor.

The alarming part was that the cat was not only batting around the laxative/stool softeners, she was trying to eat them. And was soon joined by the other cat.

Docusate pills smell kind of like feet and fish. The cats pounced upon them like they were treats I’d neglected to share with them, impersonating Hungry Hungry Hippos.

Thankfully, the pills were too mobile and too big for the cats to easily eat, despite their best efforts. One cat just sat on them like he was going to hatch them later, hiding them under his ample belly.

I can laugh about this now, because no laxatives were ingested by the cats after all.  So there it is. A bright side. There always is, even on bad days, when I am sleepily snatching laxatives from the maws of cats. Even when it’s not a full victory, and I wonder: Would I rather lose my nails than my hair?

So chemo wiped me out this weekend. I still managed to write and apply for some jobs. I had brunch with some friends today and saw some art before slipping into afternoon exhaustion. A friend unexpectedly came into town for a bit. My cats aren’t pooping uncontrollably. Things are still good, even when I’m too tired to see clearly.

Please Excuse Our Appearance

I know in my last post I said I wasn’t going to cook meth Breaking Bad-style, but that was before I realized how much my COBRA payment was going to be. I’m baking cookies for tomorrow’s community garden meeting, so I’ll see how that cooking experiment goes before I set up my lab.

Still, I’m grateful to have COBRA to carry on with my health insurance while I look for a new job. The opthamologist I saw the other day asked me what COBRA stood for, as I gave him the abbreviated story of my Hodgkin’s lymphoma, my job loss and my insurance situation. I later discovered it stands for the Consolidated Omnibus Budget Reconciliation Act. But it’s aptly named because it poisons your soul and sinks its fangs into your unemployment check.

I had made an appointment with this new doctor after nearly three weeks of a lingering eye infection. My boyfriend suggested him from the list of opthamologists within my insurance network because, according to this doctor’s credentials, he also has a degree in philosophy from Yale. Perhaps he would understand my existential crisis and anguish brought on by wearing my glasses. Also, he had an appointment open right away.

I knew I made the right selection when, after hearing my health tale, he made the following analogy: “I think the eye infection may be the least of your concerns,” he said. “It’s like World War II is going on, and the eye infection is a battle for a small island.”

He’s right, of course. I have been focusing on my eye problems, though I could argue that my nearsightedness makes it even harder to see the big picture.

Things are still going pretty well, all things considered, but this past week I’ve been plagued with random pain twinges more than usual. It’s not that they’re even that painful, just puzzling. And slightly alarming. Like someone’s playing Operation and hitting the sides. Stop dropping the spare rib already!

Right now for instance, I have a slight twinge in my abdomen. What’s in there? My liver? Then the worries begin.

One of my favorite funny writers, Laurie Notaro, describes the random pain pangs of being in her thirties in I Love Everybody (and Other Atrocious Lies), as being located in areas devoid of major organs, “places I thought were used for extra storage, for things like extra bile, a couple of feet of rolled-up intestine, balls of hair that may come in handy in the future, maybe some additional vein parts, or bits of corn.” In the book, Notaro worries she has cancer, and I don’t mean to alarm you, hypochondriacs, but that’s exactly what it feels like. Or at least that’s what my chemotherapy side effects feel like.

The other side of my chest has twinges too. And my arm socket is sore, as is the back of my neck on my less cancerous side. My doctors, at least, aren’t alarmed. When I bring these things up, the answer is, “Well, you have Hodgkin’s lymphoma and are undergoing chemo.” So I try not to worry, even when it feels like someone’s been messing with the wishbone again and my nose lights up.

I also haven’t been able to shake this funk for the past several weeks, since losing my job and having the eye infection. After applying for several positions and taking a test for a job, all of my worries and insecurities caught up to me in the middle of the night. I couldn’t sleep and sunk into despair about my ability to land a new job, my hair loss and, yes, my glasses.

Not working out on a regular basis because of everything that’s been going on is also catching up to me. I feel bad when I’m a little winded after reaching the top of a long flight of subway stairs.

I feel squishier than I used to. I’ve had to wear my glasses. My hair’s thinner. I feel diminished. Whether it’s at a job interview or walking down the street, sometimes I want to put up a sign that says, “Please Excuse Our Appearance While We’re Under Construction.” Or reconstruction, I suppose.

I realize that I’m very lucky as far as cancer patients go. And lately, I’ve realized that the thing that’s making me unhappy isn’t even the cancer so much—it’s my insecurities. I’ve spent the past few weeks obsessing about how I look or grappling with self-doubt about my career.

I’ve had these insecurities a lot longer than this cancer, and they’ve probably affected my life much more negatively over the years than this disease, a relative newcomer. They’re so ingrained, they may even be harder to find and treat. But now that I’ve diagnosed some of these nagging self-doubts and insecurities, I can hopefully shed those along with the cancerous cells.