Stem Cell Transplant Soundtrack

Now that I’m home, I can work on important things like my Stem Cell Transplant Soundtrack. I’ve been thinking of songs through this whole process, from radiation through chemo and recovery to homecoming. Below is my list.

“Radiation Vibe” Fountains of Wayne

“Radioactive” the Firm

“Fade Away and Radiate” Blondie. This was the only radiation song I could think of initially. Imagine Dragons isn’t on here because that song is terrible.

“Poison” Alice Cooper. You’ll notice a lot of hair metal in this list. Why? Because hair metal is awesome. If Nirvana hadn’t happened, I would have happily spent my high school years as a metal girl. But grunge hit, and I couldn’t find my pointy metal boots at the mall anymore, so I had to buy combat boots and become goth. Actually, in latter high school, I was mostly goth, but since it was the ’90s, there was a lot of general alternative going on—think Angela Chase’s confused wardrobe in My So-Called Life. I’d wear flannels on top of my mostly goth outfit. Anyway, my point is, I would have stayed metal if I could have.

“Shot of Poison” Lita Ford. I love Joan Jett, but I think Lita Ford doesn’t get enough credit for being in the Runaways and just generally being a pioneering female guitarist. I’ve always been a little bit Team Lita. I think that because she dressed a little provocatively, she wasn’t taken seriously. (This video is an example.) I like that she Saran Wrapped her man in this video to keep him fresh. This video also made me remember that when I was a metal girl, I wore giant crosses, like Lita here, but much more clothing.

“Don’t Drink Poison” Le Tigre. This song by feminist trio Le Tigre is to make up for the writhing of Lita Ford.

“Church of the Poison Mind” Culture Club. I’ll never forget the first time I saw Boy George. It was the early ’80s, on a morning talk show, like Good Morning America, which my grandpa was watching while my mom and grandma got ready for church. I was probably about four or five. When Boy George’s image appeared with his name, I short-circuited. I couldn’t reconcile his long hair and makeup with his name. I stood there, transfixed in front of the TV, watching the pretty man. That I spent so much time later listening to androgynous musicians and men in makeup isn’t lost on me.

“Bad Blood” Ministry

“Love Like Blood” Killing Joke

“Bloodletting” Concrete Blonde. These last two songs are nods to feeling (and looking) like a baby Nosferatu while my mouth healed.

“Fever” Madonna

“Taste the Pain” Red Hot Chili Peppers

“Cure For Pain” Morphine. Morphine was a great band, and this song is very appropriate for the week I spent in a haze.

“Sister Morphine” the Rolling Stones

“I Want a New Drug” Huey Lewis & the News

“I Wanna Be Sedated” the Ramones. I am so glad I didn’t go to senior prom and saw the Ramones instead. I pretty much was bored at every single high school dance I ever attended, but I always ended up getting roped into going. At the time, I was still plagued by the thought I “should” go to my last prom, but I didn’t have anyone to go with, whereas I had three people to see the Ramones with me. If I would have gone to prom instead of the show, I would have regretted it.

“Comfortably Numb” Pink Floyd. I’m not big on Pink Floyd, but this is what morphine is like.

“Painkiller” Judas Priest

“Movin’ On Up” Primal Scream. Once I started feeling better, this is the song that immediately came to mind. Bobby Gillespie’s shiny shirt and the chorus’ bangs are very ’90s.

“Sea Sick” Love Is All. This is for when I hit my wall of not being able to be in the hospital.

“Things Can Only Get Better” Howard Jones

“Home” Iggy Pop

“Josie” Steely Dan. I nearly forgot this extremely appropriate one, but a friend posted it to my Facebook wall. I collect songs about my name, so it’s the reason I have a Steely Dan album and a Blink 182 album.

“Coming Home” Cinderella

“Home Sweet Home” Mötley Crüe

Pushing On

I need to change my attitude if I’m going to last here until Monday. I’ve realized the last few days have loomed longer than the past several weeks. I have gotten back some of my inner peace, I suppose.

I’m a teary mess lately. Who installed these feelings? Today, I teared up thinking about last Mother’s Day, when my mom visited and accompanied me to an ABVD chemo treatment. We also went to brunch and the botanic garden. That seems so far away after this year’s journey.

When someone today asked if I was a mom, it reminded me that I might never be, and that also brought on the waterworks.

Last night’s episode of Star Trek: The Next Generation also brought on tears. It reminded me of my mom watching reruns and me going off to meet high school friends. Simpler times. What is wrong with me? Nevertheless, I called my mom to tell her I miss her.

So nothing is safe from sentimentality. I sit here now, greased up like an aging, overdramatic starlet in an old film. The hospital air is so dry, I have to put on a healthy dose of Eucerin cream on my face and scalp.

I tried sitting by the window now that the sunshine is back. What’s amazing about New York City, a metropolis of 8 million people, is that you can have a sweeping view of the city and not see a soul. I know First Avenue is bustling, yet I can’t see any actual people, just buildings.

So far, I’ve seen two people—a woman and a child. I’m so thirsty for human goings-on that they scurried out of view before I even had a chance to finish wondering about them. Is he excited for Mother’s Day? Did he make her something or buy her something? Does she know what it is? Will she have to act surprised? Where were they going?

But they were out of sight quickly, leaving me alone to gaze upon my empty-looking metropolis.

Looking to my left, there’s my world—my medication pump, my hospital bed and a window to the hall, where I see doctors and nurses pass, as well as other patients pushing their own pumps, often supported by relatives. We push on.

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.

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.

Day Zero

Tomorrow is Day Zero, as it’s listed on my treatment calendar. In the late morning, I will receive the six million stem cells that were collected a few months ago. I’ve heard doctors and nurses refer to it as a re-birthday.

While tomorrow is the big day, it’s probably going to be relatively anti-climactic. They’ll do the stem cell re-infusion in my room, through my catheter ports, in a series of four injections. Mostly, I’m told, it’s going to be smelly for a day or two, because of the preservatives used for the stem cells.

Beforehand, I’ll get some Benadryl, sure to make me sleepy, as well as Ativan, which they say is for nausea. I was on Ativan briefly when I suffered from panic disorder years ago, and while the drug itself is an anti-anxiety medication, the thought of taking Ativan has always made me irrationally nervous.

The stem cell transplant process really already began a while ago, when I started the radiation treatment. Today, I finish up my last bag of chemotherapy at around 5 pm, and the autologous stem cell infusion, slated for around 11 am, is the very last part of this treatment. (So, right now, almost two steps down and one to go.)

After that, it’s all recovery. People have asked me why they’re giving me these stem cells that they harvested a few months ago. The chemo regimen that I’m on is about four times stronger than the previous high-dose ICE treatments I received, so it damages your bone marrow. (The radiation also has its depleting side effects as well.) My red blood cells will be low, so I’ll experience fatigue, while my low white blood cells will put me at higher risk for infection. Low platelets make you prone to bleeding.

So the stem cells are to give your body a boost towards recovery. In the meantime, however, there’s that dip when everything is low and the side effects are at their maximum for about seven to 10 days—hence the fatigue, nausea, mouth sores, fever and other things expected during this coming week.

I’ve heard multiple times, though, that once your counts come back up, you immediately turn a corner and start to feel better, like a switch going off.

Right now, I’m just starting to feel the side effects and find myself edging on optimum crankiness. It’s that point where you don’t feel well, but still have the energy to potentially be a big jerk if you wanted to be. Overall, I’m going to try to lay low today and slip into my hermit mode.

My throat is dry, and my first mouth sores are appearing. When I eat, my digestive tract is rocked by violent burping that sometimes develops into hiccups.

Tomorrow marks the last step on a fresh start that will hopefully close a year of treatment for my Hodgkin’s lymphoma. I’m only cautiously optimistic, however. While this is supposed to be “the best type of cancer,” with mostly a positive prognosis, having refractory Hodgkin’s lymphoma essentially puts you in the unluckiest of the lucky category. I see and hear stories of people battling Hodgkin’s lymphoma for two, three, eight years out, and it scares me, especially since I have that mysterious spot that still lit up on my last PET scan.

One doctor seems to think it’s Hodgkin’s lymphoma spread to the pancreas, while another doctor doesn’t seem to think that’s possible. All doctors seem confident that this radiation and chemo combo is the best thing for me, so it seems pointless for me to worry. As that old saying goes, worrying is like praying for something you don’t want to happen.

And yet…I worry. As the social worker last week sat down to talk to me and get to the root of my mental well-being, we talked about my fears about this transplant. My biggest fear is that I won’t get better. It’s not death that I fear. (It’s unlikely, but I’ve thought about it, and it doesn’t bother me as much as everything that might happen before it.) It’s the thought that this cancer just won’t go away.

I’m tired of not living life on my terms anymore. This makes me feel like a petulant child to say this—for who does really do whatever he or she wants? But I’m tired of having an asterisk on the end of everything that I do. (*If I can travel by then. *But I can’t be in the sun. *When I can possibly work full-time.) And I’m terrified of taking life back up again, just to have the lymphoma come back and reclaim its hold.

I especially feel terrible, because I see so many brave and inspiring people fighting this disease and other forms of cancer. I feel like I don’t have the strength sometimes.

Right now, I’m just going to tap into the reserves and prepare myself for the upcoming brutal week. I don’t need to worry about my scan months from now—I just need to focus on the closest horizon. I’ll find the strength I need when I need it.

Things to Look Forward To

I don’t mean to brag, but I’m developing a reputation on this floor as a cat lady with an impressive urine output.

Does this not earn me bragging rights? Keep in mind I haven’t been interacting with people much lately.

The doctor this morning asked me what was new in the cat world and seemed impressed or disturbed by the Easter card displayed with a cat dressed as a rabbit. Someone just now dropped by a cat calendar for the doctors to see tomorrow on their rounds, and a cat puzzle and book arrived in the mail.

Once again, I was complimented on how much I’m peeing, so I don’t need any diuretics to flush out the Cytoxan, which can damage the bladder and the kidneys if it sits too long in your system. Apparently, I may have set some sort of pee record. Something else to put on my resume and those job applications, when they ask you an interesting fact about yourself in 140 characters or less: Current record holder of urine output on the bone marrow transplant floor.

Despite my increasingly feral nature brought on my isolation, visitors and the digital picture frame my boyfriend filled up for me reminded me of the outside world and all the things I plan to do.

The thing is: I’m afraid to make plans. I don’t want to jinx myself. My PET scan after the transplant will probably be in August, and so I’m not making specific plans quite yet. One of my friends recently declared she’s determined to have a blast this summer, so we just have to figure out what that entails. But here are some things I have to look forward to.

New Couch
A new couch arrived in my apartment last week. So far, it’s met the cats’ approval.

photo (11)

 

 

 

 

 

 

 

Visitors
My boyfriend’s parents are visiting next week, though they’ll have to see me here, in my hospital room. But I’m talking beyond hospital drop-bys. The new couch is a sleeper couch, so once I’m allowed to be around people on a more regular basis, I expect to have some visitors. One of my friends might come out in August for a concert and a beach trip.

beach

 

 

 

 

 

 

 

Travel
From what I remember—and I could be wrong—I’m not allowed to travel for three months, no air travel for six months, no international travel for a year, and no third-world countries for two years. I’m not going to make any definite travel plans, but there’s talk of Montreal by train in the fall, and Ohio in October. When I’m cleared for international travel again, I want to see my friends in Dublin, Copenhagen and Prague, with some side trips, but I’m getting way ahead of myself.

copenhagen

 

 

 

 

 

 

 

Gardening
This is something else I have to check on, but I think I’ll be allowed to garden, so long as I’m not working with manure. If I can’t spend as much time working in the community garden, maybe I’ll actually read and relax. It’s something I always say I’ll do, but the sight of an errant weed or plants growing in between the brick pathways makes me deviate from my intended downtime.

alium

 

 

 

 

 

 

 

 

 

Concerts
Since I’m supposed to avoid crowds for the first three months of my recovery period, I’m probably going to miss some shows I’d planned on going to this summer—including Devo, Morrissey and Nick Cave. But this fall, I have tickets to see Front 242 and Echo and the Bunnymen.

Simple Minds

Hospital Life

Months ago, I told myself I would post every day while I was in the hospital, but I quickly realized that wouldn’t happen. I’ve been busy getting radiation, starting chemo and trying to wrap up some work items. At least this first week in the hospital has gone by quickly. As I mentioned, it’s strange to have a cut-off date when you know you’ll start to feel side effects, so I feel as if the window is closing to update the blog, have visitors and get other things done. My deadline approaches, so here’s a post on my hospital life this past week.

Radiation. On Friday, I wrapped up my week of TLI (total lymphoid irradiation), completing 20 total sessions of radiation. Last week, the lymph nodes in my neck were swollen and sore, but that’s expected. I’m told the glands don’t like the radiation. Later on, I will probably experience a sunburn type of skin reaction, as well as mouth sores and a sore throat that makes it difficult to swallow.

The worst part of the radiation, for me, were the measurements they took the Fridays before they started the radiation. It required staying still, in the body cast they’d created for you, for a long time. In both cases the time ran over the usual 45 minutes to about an hour the first time and an hour and 15 minutes the second time. I’m pretty good at being still for long periods of time, but I had to not move for about 15 minutes to half an hour longer than my comfort zone. And once you’re past minute one of that zone and have the fidgets, it seems like an eternity. Still, it wasn’t too bad. (And when they’re radiating your insides, I understand their need for precision.)

During outpatient radiation, I would trade my shirt for a gown, then lay down in my mold, while they adjusted my position on the table, darken my tattoos with a marker and make some additional marks. Then they would radiate the two portions where there had been residual cancer in my chest and belly. The machine would flip around and radiate the front, then the back. (It reminded me of the scene in Logan’s Run, where Farrah Fawcett is offering to give Michael York a facelift but someone messes with the lasers. As I’ve noted before, this film that I saw multiple times during my childhood really influenced my ideas of the future.)

My outpatient treatments were six hours apart, so I was never sure if I should go back home to Brooklyn or wander around looking for WiFi with my elderly (in tech years) computer that needs to be plugged in to get much a charge these days. I also ended up being on the train during rush hour. Usually, this wouldn’t be a problem for me, but I’ve been a hermit for a few months. And in stark contrast of how unfailingly nice everyone is at the hospital, I was ill-prepared for the cruelties of New York City at rush hour. I expect I’ll have to re-enter society slowly once I’m recovering from my stem cell transplant.

Inpatient radiation was much the same, though the set up for the TLI would take a bit longer, and I was wheeled down from my hospital room. I also sometimes had student trainees the last few days of treatment, not that this added much to the time. I was told they don’t get to see many TLI treatments so I’m glad my radiation was a treat for somebody.

On the first day, I was told I could pick a music preference or channel, but I blanked. I couldn’t think of anything appropriate, so I didn’t give them any suggestions and spent some time listening to classic rock, the Billy Joel channel and adult contemporary pop music, but it provided food for thought as I was radiated.

I gained a new appreciation for Adele. “We Didn’t Start the Fire” really doesn’t stand up to the test of time. Coldplay is still boring. I also heard a lot of John Mayer songs, and I don’t get why people like his music. I tried to spend one session trying to name all the starlets he’s dated, but the radiation treatments don’t last that long. I also tried to think of radiation songs, but I could think only of Blondie’s “Fade Away and Radiate.”

Food. My throat hasn’t started to hurt yet, I’m still free of mouth sores and my appetite is still OK. I’m on a Zofran drip, though I can tell there’s a slight rebellion going on in my digestive tract. As I’ve noted before, it’s a strange feeling of knowing the mechanics are a little off but not being able to feel the effects. It’s like seeing your tire blow out and feeling only a slight wobble but still being able to continue driving your car with no problems.

I’ve been trying to enjoy chewing at eating as long as possible, before I can’t eat. I managed to eat all my desired specials this week: Nutella crepes, Mexican bean soup, a Sloppy Joe, Asian vegetable soup, shrimp in garlic sauce and breakfast pizza. I also look forward to the afternoon tea service more than I should, because the tea arrives with a little pastry—a walnut muffin, a mini red velvet cookie with white chocolate chips, some of the best scones I’ve had in awhile.

The indigestion from the radiation and chemo has thankfully been my worst side effect so far, and I’ve been getting extra medication for that. I had the hiccups in the middle of the night, but they didn’t last long. I’ve been trying to stick to a soft diet of soups and cereals, but have been waylaid my some of the daily specials. Today I had a hot dog, but I have a plan of eating small breakfasts and dinners and a substantial lunch so I can digest during the day.

I hate seeing food go to waste to the point where I’m weird about it. With so many of the trays arriving with condiment packets—salt, pepper, sugar, honey—it was only natural that I would start condiment hoarding, in case I needed to dip into my stores at a later date. I had them visible on a shelf, but I realized my boyfriend would frown at them and throw them away while I am plugged into the wall and unable to stop him. I’m considering putting them in my room safe.

Oh, I’ve also been eating candy, though that’s probably going to come to an end soon. I am now in possession of two Easter basket of goodies, and another friend brought me a giant Reese’s egg. And someone else thought to combine the cat theme and the candy theme with Katzenzungen, German chocolates with pictures of cats on the box.

I also got a picnic-type basket filled with packaged cookies and cakes. There was a tense moment when the nurse wasn’t sure if the desserts were approved for me to eat or not, so I briefly considered eating as many as I could while she was gone checking. But they were not confiscated.

Exercise. If there’s one thing that’s been drilled into my head over and over again during my preparation for this stem cell transplant, it’s the importance of staying active. Or, at the very least, not staying completely prone in bed.

My doctor and nurses told me that when I’m not sleeping, I should sit it in a chair. Being flat for too long increases your chance for contracting pneumonia, so they want you elevated.

The doctor told me that I should also always sleep at a 30-degree angle, at least. With the adjustable bed, this is possible to measure, but my attempts have been only partially successful. If I sleep on my side and wedge myself in with pillows, I can maintain this angle, but I’ve woken up a few times flat and scrunched up at the bottom of the bed.

Right now, it’s the easy part. It’s going to be after the transplant when it’s going to be hard to get moving and find motivation to sit in a chair.

Though I’ve said this before, I’m naturally a sedentary person and, as much as I love working out, it really takes me a lot of motivation to do so. Once I stop moving for a period of time, it’s extremely easy for me to slip back into my natural sloth-like state.

Since I’ve been here, my counts have been up and down, so I’ve been allowed to do laps in the hall for only three days since I’ve been here. I’ve heard 14 laps is a mile, so I’ve been trying to do that, but I lose count.

Yesterday on my walk, I found the designated room where visitors can eat. I peered through the window from the hall, and a man was about to take a pizza out of box. I thought it would be funny to stand at the window, with my gloved hands against the glass, wearing my medical mask, but it’s one of those things you only think about doing, because it would also be weird.

It’s not the pole filled with bags of chemo that makes it strange to walk in the hall. It’s the mask. No one can tell when you’re smiling.

I did have one session of hospital yoga, and it was nice to stretch and get moving. Obviously, we didn’t do anything to strenuous, but the instructor had me do some seated positions. For as long as I’m able, I’d like to continue with the bedside yoga program, as they call it.

Chemo. I started chemo on Saturday. I get a big bag of etoposide that the nurses change every 24 hours. It’s bubbly—I was calling it the “Champagne of chemo”—so it was causing air in the line and beeping pretty often. Every nurse has a trick to make it stop beeping, and the third nurse’s fix made it stop for good, so that’s good, considering I have another day and a half to go. Also, I found myself addressing my beeping pump and telling it to be quiet, so I named my pump Wilson after Tom Hanks’ volleyball companion in Castaway.

I’m also on cytoxan, which can damage your bladder if it sits around in there too long, so I’m on a lot of fluids as well. So far, they haven’t had to give me a diuretic and they keep saying, I’m “peeing like a champ.” It feels good to excel at something, even if it’s just because I’ve been drinking a lot of water.

So far, aside from my nagging indigestion, the chemo has been OK. The worst part is set for post-transplant, when all the side effects are supposed to hit me at once.

Chest catheter. It’s my last three weeks or so with my trusty chest catheter. It’s been so nice to give my poor, abused veins a rest.

I’ve been worried that my cats or a stranger would pull out my chest catheter somehow, but it turns out that I’m my own worst enemy. Now that I’m hooked up to my chemo, I’ve stepped on the lines a few times.

Also, though I love the convenience of electronics, the notion of charging them irrationally feels like a terrible inconvenience. And now that my computer needs to be plugged in almost all the time, it irks me. So you can imagine how I feel at having to essentially plug in myself—or at least this medication pump that I’m attached to. I’m getting used to it, but I long to be free.

Accommodations and décor. This is my first time on the bone marrow transplant floor. I have my own room, while I’m isolated from germs. There’s a chance I might get moved to another floor and a shared room when I’m starting to feel better.

My room is nice, with drawers for my stuff and a sleeper chair, in case my boyfriend wants to stay over. There’s a computer, a TV, a bed and a few chairs, as well as my own private bathroom. It’s not a bad place to call home for a month, considering the circumstances.

My view is of an adjacent wall. It’s the first thing I noticed when I walked in. It’s not as nice as my previous views of the Triborough Bridge, but I’m not sure if I want to put in for a room transfer just for the view on the other side of the building. I have a patch of sky, if I look up. I keep waffling back and forth, but I think I’m just going to stay put.

I arrived only with my clothes, computer and Kindle, as well as my cat blanket, a cat toiletry bag and a cat totem—all gifts. Since then, the cats have increased, and I now have a book of cat stickers, a drawing of one of my cats that someone sent and cat get-well and Easter cards.

Yesterday, my boyfriend brought me a digital picture frame loaded with photos. Sometimes, I can’t imagine a return to “normal” life, and sometimes I don’t dare, in case I’m disappointed. Yet looking at photos of family and friends and so many happy memories has been more therapeutic than I would have thought, and it reminds me of the good things to come.

Even more cats.

Cats.

cats

Even more cats!

 

 

More cats.

More cats.

Candy.

Candy.