Finding Strength

As I may have mentioned, I am beyond antsy at this point. The latest is that I’ll be here through the weekend. Maybe I’ll be released on Sunday at the earliest, but it’s not likely.

Much thanks to those who have agreed to visit and to try to keep me sane, as I climb the walls.

Today, I may venture to the patient lounge on the 15th floor just to get out of my room and see what’s happening. Last night, someone knocked on my door and offered a guitarist to serenade me. It’s a cool idea, but I’m weird about musicians/performers being able to see me, so I deferred to another time.

Thanks, too, to all of those who have offered me words of strength—and encouraging words about my own strength.

The thing is, I never wanted to be strong. Often, I worried I was weak. I hoped I would stay that way, untested by life.

When I looked at my somewhat charmed life, I feared I skipped a step. Had I done something to deserve these amazing friends? This life, rich in experiences? A career I loved? The love of my life? Did I need to suffer first? Work harder?

I sometimes worried that I hadn’t earned what I had. Now I know that’s not true. I worked for what I had and I definitely deserve the company of the great people I’ve surrounded myself with.

I didn’t need cancer to see that. I didn’t need cancer to make me stronger, though it has. Sometimes, something terrible happens, and we don’t know why. This was one of those things. I hope to be on the other side soon.

Waiting

I’ve reached the end of my patience, just when I need it the most. I’ve been here 27 days.

It’s no fault of the hospital, but I’m just ready to go. I felt patient and Zen as a Buddha when the doctors told me I’d be going home soon on Monday and Tuesday.

Today, I’m ready to climb the walls. Or, more specifically, the wall that I seem to have hit. I’m tired. I feel well enough to be bored, but lack the energy to do most things. TV bores me, while reading requires a little too much mental energy. I yawn frequently, but it hurts my throat. I look like I’m crying, because my eyes water so much from being tired. I can’t believe how exhausted I am without the morphine.

Sometimes I do cry, because I’m just tired of being sick. Everything smells hospital-tinged. Then I feel a pang of guilt for those who have been here longer, for those who suffer. For those who check in and never check out.

I estimate I will be here another five to seven days. It’s not an eternity, even in hospital time.

Tick Tock

My release is soon. According to my doctors, I could get out as soon as this week. Here’s what has to happen:

1. My counts have to be good. So far, so good.

2. I have to be able to eat 1,000 calories per day. Right now, I’m still struggling with broth and pudding. Today, perhaps I try some mashed potatoes. Tomorrow, if it’s rainy, I plan up on curling up with Game of Thrones and a Cranky Monkey smoothie.

3. I have to get rid of my IV medication. This is good, because I’m not on very much medication at all, considering. I’m no longer receiving morphine, but I still have the pain pump, so the morphine’s under my control. The anti-nausea drugs, Acyclovir, vitamins and other goodies I’ll eventually have to take by mouth, much more doable now that my throat is feeling better.

4. I have to drink a liter of water a day. Pre-transplant, this wasn’t a problem, so let’s see if I can get there again, with my sore esophagus.

Fingers crossed. I can’t simply chug some water and eat a bunch of food and check myself out. Hopefully, I feel well enough in the upcoming days to meet my goals and get out of here! After 26 days, I’m ready!

On Blogging

My invitation from The Big C and Me to join the World Blogging Tour last week got me thinking about why I write these blogs. At first, it was a way to process what was happening with my Hodgkin’s lymphoma, and later, once I decided to share that I had cancer in September 2013, it was a way to keep people posted on what was going on. But I’ve also wanted it to be a place where those going through ABVD chemotherapy or a stem cell transplant could read about my experience so they had an idea of what to expect.

I found a few blogs about Hodgkin’s lymphoma and refractory Hodgkin’s lymphoma to be helpful, so I wanted to put my own info out there, although each patient has his or her own experience. Some people can eat all the way through the transplant, some have throat pain (like me), and others have nausea. Some people experience very few side effects, while other people have many. Many people go into remission after ABVD, while some refractory or relapsed cases need additional trials, chemo and radiation.

I never wanted to become a cancer blogger, because I never wanted cancer. Once I started writing, though, it became extremely therapeutic. When I talk about pain or side effects, I hope it doesn’t come across as self-indulgent or woe-is-me. It’s just to let people know what happened and what they might expect. I’m not one to pore over every blog out there either, because at some point, I’d freak myself out.

I suppose my message is: If I can to this, so can you. I have a low tolerance for pain. I’m squeamish. I don’t like doing things I don’t want to do.

My experience, overall, has been a good one, despite the disappointments of having refractory Hodgkin’s lymphoma and the year-plus of treatments.

Here’s a little update on what’s going on with me, more than a week after my transplant.

My eyelashes are gone. They just disappeared one day. In high school, this guy I knew plucked out all his eyelashes one day because he was bored, he told me, as we stood in line for gym attendance. His eventually grew back. I have a few left, and they keep depositing themselves into my eyes.

My eyebrows also are mostly gone. I feel as if I spend more time, money and thought grooming my brows than my hair (back when I had hair). It’s almost a relief. Fine, take a break, brows. You’ve earned it. Come back when you’re rested, and we will resume our struggle with how much real estate on my face you’re allowed. Spoiler alert: Not as much as you seem to think. (I still have a few mustache hairs in place, though. Those can go away forever if they’d like.)

I am nearly sipping. I took about seven sips of tea last night, and it felt momentous until I looked at my nearly full cup. Oh, well. Small steps. The doctors seemed impressed after looking into my mouth, which has been healing, but they also don’t want me to force myself to eat or drink. Taking a few tiny pills today really hurt. Today, more tea; tomorrow, broth.

My throat's enemy: The tiny pill.

My throat’s enemy: The tiny pill.

I had a bit more tea today, but I forgot that I need to focus all my attention on swallowing liquids while my esophagus heals. Otherwise, disaster ensues. Luckily, I didn’t choke too much on my tea.

I’m starting to get hungry again. They really go all out here to try to tempt you to eat, so it’s no fault of the menu. I have in my possession the regular menu, the weekly specials, the children’s menu (with a Thanksgiving Day sandwich) and a purée menu (where everything is puréed, even the lasagna that I plan on ordering when I am well enough). I just need to get rid of this pain.

I am awake for hours at a time. I still nod off a lot—while I’m typing an email or getting my vitals taken. But I can stay awake for awhile without napping again. But on that note … I can tell I’m falling asleep now if I close my eyes for more than a second or two.

Gone Too Soon

Today, I saw an announcement on Facebook from someone I went to high school with that one of our classmates had died.

For a split second, I expected to see my own name. But it was someone from our class who had an ongoing battle with diabetes.

We weren’t close, but I knew her. We had some of the same classes and friends. My high school class of about 250 people had developed some sort of solidarity by the time we reached senior year. We had survived adolescence and most of our teen years together and had formed a bond. While a lot of people I know complain when they get a high school classmate friend request, I can say I genuinely like most of the people I went to high school with.

So when someone dies it’s upsetting and sad to say the least. In this case, I knew very little about her diabetes. Her rare health posts were upbeat, during her surgeries and hospital stays. I often admired how she handled her chronic illness with grace and a sense of humor.

At our 10-year reunion, I ended up talking to her for a while. There’s a photo somewhere of me and her and another friend goofing off, sticking our tongues out at the camera and being less angst-filled than we were as teens.

She had a tough exterior, but it didn’t hide that she was a truly sweet, generous person. I hope I can handle what life throws at me with half as much strength. RIP.

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.

Beep On Beepin’ On

After reading through Monday’s post that I wrote while falling asleep in a chair, I realized it had some egregious typos and a final paragraph that stopped in mid-sentence. I went back to fix them, and so had my boyfriend. It’s good to have the love of great editor.  (Actually, it’s nice when places that work with “content” have actual editors, but that’s another argument for another day.)

But here’s some breaking news:  The doctors agree that I’m getting better!

That’s the good, long-term news. My counts are going to start going up, so I’m just starting my recovery. And this doesn’t necessarily mean I’ll be in remission. I’ll find that out in August. But I’ll be out of here probably in the coming weeks.

Right now, my throat still feels like it’s on fire and my tongue is swollen. The inside of my mouth is covered in blisters, and I can’t swallow. I had to take some Vitamin K, and I opted for the shot to avoid the pain of choking down three tiny pills. Just a few sips of water or tea send me into a choking or nausea fit.

But this is it. This is about the worst I should feel as things turn around.  It’s “The Final Countdown.” One of the instructors at the fitness bootcamp I attended would remind us of the Europe song as we suffered through the last seconds of plank. “Doo-DOO-DOO-DOO, Doo-DA-DOO-DOO-DOO. It’s the final countdown!”

Since Monday (well Saturday, really), I’ve been mostly asleep, because of my fatigue, morphine and occasional Ativan. (I prefer Compazine when I can get it.)

A side effect of the mucositis is thick, clear saliva. Because there’s often blood in my saliva, I often get little blood stains on my lips, so I look like a baby vampire, a wee Nosferatu. And the excess mucus makes me feel like an infant, able to blow spit bubbles and gurgle at people who try to talk to me. Yesterday, a nurse who came in to draw blood in the early morning said, “Hi, I remember you.”

Me, as I put on my glasses to see: Spit bubble. Happy noises. Nodding.

Once I could use my tissues, tiny spittoon and mouth vacuum taped to the side of by bed, I could try to pack all my greetings into a few seconds. This mouth vacuum is a tiny version of the dentist vacs and helps clear up my drool overflow. The first moments of waking, however, require a lot of gargling.

If you were looking into my room most of this week, you would have seen me carrying on happy conversations with myself and answering questions that had been posed to me. In one dream, I talked to my boyfriend about horse pregnancy, while in another, I helped the pope pick out a new watercolor for the Vatican. The latter’s a little far-fetched, especially when I don’t know much about impressionism; my own collection includes mainly anthropomorphic art (squirrels with martinis, crocodiles with bananas, etc.). Mostly, I’ll wake up as I’m saying something profound, like “OK,” or “I’m not sure.”

When my boyfriend visits, I’ll suddenly look at him and announce things like, “OK, but we’ll have to go by plane,” much to his amusement. I also know I’ve said things to the night nurses, who I’m sure hear a lot of morphine talk. I think I must look sometimes like I’m meditating.

Every time I hit the morphine button, I think of Kraftwerk’s “Pocket Calculator.”

My boyfriend’s parents came by today. Because of the no-travel rule, I haven’t seen them for almost a year-and-a-half. His mom’s cat quilt that she made has been receiving high praise throughout the hospital. Next time they visit, I’d like to join in on the NYC fun, but it was comforting to have them here.

Though I’ve turned a corner, I’m still not taking most visitors or people I don’t consider immediate family. I’m still too gooey for public consumption.

I texted my boyfriend the good news about being on upswing, since he was out and about. Perhaps one of the best things about today was telling my mom that I’m getting better. Almost every day, she’s been saying, “But you’re getting better, right?” or “Does this mean you’re getting better?” I mean, eventually, but I was just holding steady there for awhile, and that’s what they expected me to do. This wasn’t fast enough for my mom. (By the way, if you DO know my mom, don’t tell her about my blog. She doesn’t understand blogs, which she pronounces as blags.]

So I could finally pass along this news from the doctors: I’m getting better. She was so giddy that, at the end of a conversation she had with me about some vegetables she bought, my announcement that I need to go so I could pack didn’t even phase her. (I nodded off for a second and thought I needed to hitch a ride with a truck on a rainy interstate.) “No, nevermind,” I sighed. “I think I just need to get to sleep.”

And on that note, after falling asleep about a dozen times while writing this, good night!