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!

 

 

 

As I was taught in journalism school, I’m going to put the most important information at the top. I have a blood clot in my lung, so I’m going to take blood thinners. Also, my PET scan showed almost no cancerous activity. I have had two remaining stubborn spots that ignored the ABVD chemo and shrunk slightly with the Brentuximab. Two rounds of augmented ICE finally got rid of the spot in my chest. A tiny bit remains in the belly area, but the good news is that they’re going to proceed as planned, with the radiation and the stem cell transplant.

I’ve been pretty sedentary lately. But over the past week or so, I’ve felt winded—really winded walking up the short flights of stairs to our third-story apartment. I also was really out of breath after running for the bus the other evening, but it was worth it. It was really rainy and windy, and I’d taken a gamble that the bus might be waiting at the stop by the train station. It was, and I had to walk only a block home. I consider taking this risk a great success now that I don’t get out much.

Yesterday, I went to the near-top of the Empire State Building. Friends were in town and they offered to be my tourist beards to this attraction, which I’ve never visited. I now have seen everything in New York City there is to see. (Literally—you can see everything from the near-top, which is considerably cheaper than the absolute top.) You have the option of walking up six flights of stairs or taking an elevator to the observation deck. We looked at one another for awhile, all hoping someone would suggest the elevator. Finally, I cited my health and recent shortness of breath to avoid the stairs. Also, walking up six flights of steps is harder than it sounds. I did it once when an elevator was broken and deeply regretted my decision between floors four and five.

But now I can cite my pulmonary embolism as a reason for my shortness of breath. Although the doctor pointed out my hemoglobin is low, and that can also make you more tired easily. (That explains why I needed to go to bed after cleaning the apartment yesterday.) I suppose I should have noticed something amiss, but it’s hard to tell what isn’t normal anymore.

I also forgot to ask if there was anything I could do to avoid clots—other than to not have Hodgkin’s lymphoma or chemo. I seem particularly clotty, although I don’t think my arm, which is feeling a little better, showed any clots. It’s just irritated veins, I guess.

On Thursday, I’m going to have some ultrasounds of my legs done to see if they should consider filter that would filter out any more blood clots. (It’s one of those things that sounds made-up. Really? They can do that?) And I’m on Lovenox for another six months. I have those weird, hard bumps under my skin from the Neupogen injections, so I feel as if I’m running out of places to give myself shots.

As for the PET scan, it’s good-ish news. I’d rather have this stubborn cancer spot be gone already, but I’m also glad that it’s not going to hold up the next steps for radiation and stem cell transplant. The doctor showed me the pictures, and everything looks much better.

I’m meeting with the doctor about the next steps for radiation and transplant on Thursday, so I’m still on track! I won’t be in the hospital this weekend, but hopefully by the following weekend, I can start my stay. Not that I’m looking forward to it, but I’m looking forward to being on the other side of that stay.

I now have more than 6 million stem cells ready for my transplant. It turns out my guess was pretty accurate on Monday—I had 3 million and change—and I had to go back Tuesday to have more stem cells collected.

So I had some grilled cheese and set off for Manhattan, but not without completely forgetting the Neupogen injections. I came home, took my shots and then rushed to the stem cell collection room. It was a full house, with all the beds taken, so I had to wait to get hooked up. Then my platelets were low, so I couldn’t get a heparin injection, which apparently moves things along. So this collection took a little more than five hours, and I was given heparin at the end.

I also got some yogurt to keep my calcium levels up, and the nurses shared some of their candy with me. It’s a pretty happy place, considering your blood is being drawn out, spun around and put back in for hours. The only painful part is waiting, and the nurses do their best to make that painless.

I plugged my laptop in and did some work, but I felt as if I was moving at a snail’s pace. A nurse explained that the Neopogen boosts white blood cell production, and the bone marrow is so focused on that that it lets other stuff slide — like platelets for clotting and red blood cells.

That explains why I’d been so sleepy. On Monday, I came home took a nap, and then went to bed early and slept for 10 hours. I woke up Tuesday refreshed but by hour three, I couldn’t work anymore and decided to read, and then I slept for at least an hour.

A social worker from the hospital also came by to see if I had any questions and to make sure I would have adequate care after the transplant. I was a little sleepy, so I feel as if I didn’t have any good questions. Also, my appointment list just had a name on Monday, and I didn’t check to see who I’d be seeing. So I’d gone to my dental appointment ready to discuss my feelings. (I know my regular dentist, so I guess I can discuss my concerns with her if I would like both a check-up and to talk about my well-being.) Most of my questions were answered by the online session last week with a transplant doctor and a volunteer who talked about going through an autologous stem cell transplant for Hodgkin’s lymphoma.

TMI alert: Whenever I blow my nose, my right nostril often produces blood. It’s happened after both ICE treatments and the doctors said since my platelets are low, I’m prone to bleeding. To add injury to this insult, while I was wiping up the dried blood from under my nose, it must have cut my skin, so I now have a very visible cut under my right nostril. It now beats my most stupid injury surpassing the time I chipped my tooth while drinking a fancy Bloody Mary. (Felled by an olive pit.)

I still have a giant, swollen monster arm. I’m worried that once my platelet counts go up, it might just burst open. I assume that’s never happened. In the meantime, I will continue to smell like menthol patches and not bend my arm.

phlebitis

Tomorrow, I have an online education session about my autologous stem cell transplant. I’ve been reading the giant preparation binder, but I haven’t thought of any questions. Considering that’s what I do for a living, I’m a little disappointed in myself, but I haven’t gotten through much of the material.

Part of me is honestly scared of what’s ahead. All I can think of are frivolous and fantastical concerns. For now, I will blame my procrastination on the plastic-loving cat, who runs her sandpaper tongue over the edges of the binder whenever I try to read. Here are a few of the concerns I won’t talk about tomorrow:

Do vampires roam the hospital floors? My most immediate cause for alarm yesterday was when I read that you smell like garlic for a few days after the transplant. With all this blood, are they keeping us from turning into vampires? Is a stem cell transplant really taking someone to the edge of vampirism, and then giving us stem cells to prevent the change? Is that why some patients in the hospital have “sitters” with them all night? It’s not to help guide them to the bathroom—it’s to prevent them from draining other patients while they sleep.

I’ve seen several Blade movies. Also, I was goth for awhile and have read all the Anne Rice vampire novels, so I can be considered somewhat of a vampire expert.

According to the binder, it’s a preservative that causes the garlic smell, not your body fighting off vampirism. I prefer to turn cutting-edge science into terms I can understand: medieval villager talk.

I also read that the nurses can give you lemons to alleviate the garlic smell. That sounds…sort of delicious, if paired with a delicate fish and a nice white wine. But if I see anyone with a chef’s hat lurking around those few days, I’m leaving that hospital. At least my garlic smell will keep away those on the verge of turning.

Whatever will I wear?  After I Googled “stem cell transplant shirts” or “catheter shirts,” only a few results come up—including my own blog. Am I the only person with sartorial concerns during my stem cell transplant? I really don’t think I’ll care what I’ll look like—after all I’m supposed to feel horrible, and I’ve looked better.

But hospital gowns are drafty. After the leukapheresis catheter placement, I could wear my lounge pants, but I had to wear a gown on top to provide access to the catheter. I thought a lot about my gown when I was in the hospital after so recently seeing all the Oscar fashions. My gown could be said to have a plunging and an open back, worn off-the shoulder. Most gowns, though, whether they’re ball gowns or hospital gowns, aren’t that comfortable for long-term wear.

My booklet says that if you wear you own clothes to the hospital, to wear shirts that allow catheter access. So does that mean Henleys? Baseball jerseys? I have a few button-top tees and thermals. I’ve done some tentative internet searches and all I know is that L.L.Bean probably has whatever I need (or great Google analytics).

What do I do with my head? Right now, my head smells like a Strawberry Shortcake doll and her cat, Custard. If you were a little girl in the early ’80s, you know what I’m talking about. I should wear a big muffin hat to keep my head warm and get some striped stockings.

One of the best things about Strawberry Shortcake dolls was that they smelled like the desserts—the namesake character, Lemon Meringue, and her other friends. (Also, why do they keep updating dolls? This is not how they looked before. Strawberry Shortcake lives in a land of desserts; she doesn’t text and go shopping at the mall with her tween friends.)

In an effort to ease my scalp dryness since the hospital, I’ve taken to oiling my head with some of The Body Shop’s Beautifying Oils I got at a press event. I remember at the event, the PR person said you could put it your hair, so I did. This happened a lot at beauty events. I would put face cream on my face instead of on the back of my hand. PR people always seemed taken aback, so I kept doing it. I gave most of the oils away, but I can now choose between strawberry and Satsuma.

If I’m bald, then do I have dandruff? I’m still trying to figure out what I should use. I’m afraid to use moisturizer, although I guess I can opt for a natural brand.

So these are my concerns today. I’m sure I’ll have some legitimate ones tomorrow. Until then, I will think about how to ask delicately about vampires in the halls and hospital fashion.