A Return to Working Out (Plus a Cockroach)

It feels good to put on workout clothes again, even if it’s just to do a 30-minute walking DVD or stream a yoga for cancer patients practice.

I’m especially excited to just move again and work up a bit of a sweat. The thing with feeling pretty good post-transplant is that it’s easy to overdo it, so I still have to remember to take it easy. I overdid it a bit on Tuesday and I was asleep by 10:30.

It’s humbling how much strength and flexibility I’ve lost, but I just have to start slowly to rebuild. I have to admit, the trainers in the beginner workout videos are more gentle than the intermediate or advanced levels. Leslie Sansone just wants me to walk and do some bounces, unlike Jillian Michaels, who wants me to “feel like you’re going to die.”

This post isn’t really about my triumphant return to working out or the long journey I have ahead of me. It’s about the momentary terror I felt this afternoon, after I unrolled my yoga mat.

As I looked forward to stretching and finding some inner peace, I was confronted by my mortal enemy, which fell out of my yoga mat. (No, it wasn’t Prince, though he is tiny.)

When I spread out my mat after months of not using it, out fell a cockroach.

We rarely get cockroaches in this apartment, but if you live in New York City, you’re probably going to come across a stray roach or two. I find that most of them seem to by the doors, but they’re pretty big, so I guess trying to sneak in through a smaller space isn’t an option. It’s like Gregor from The Metamorphosis is coming for a visit and has to knock. A former co-worker was once shocked that a roach made it into her doorman building—she kept emphasizing the doorman part, as if vermin have to be vetted at the front door. But it seems as if the larger ones do just waltz in like an uninvited guest.

I’ve presented people with the following question: Which is better, big roaches or small roaches? Most people will say big cockroaches, because they’re easier to find, plus an infestation of small cockroaches seems to mean they’re more bountiful. Also, many people—especially New Yorkers—seem to have a very specific vermin hierarchy of worst to “best” for having in one’s apartment.

I live in fear of coming across cockroaches, but it’s a terrible way to live, so I eventually let my guard down. That’s usually when one makes a dramatic appearance.

Cockroaches seem to choose to present themselves specifically to me. People I live with rarely find cockroaches, while I’m convinced they specifically sacrifice themselves every now and then to torment me.

In my early 20s, when lived close to The Ohio State University campus, I was plagued by sightings, while my two roommates never saw them and dismissed my complaints. I was telling a friend about this recently. “So I started to leave the roach bodies around for him to find,” I explained. “He didn’t believe me.”

“Oh, I see,” she replied. “He was the one being unreasonable.”

I never said I was a good roommate.

My theory is that I was responsible for the death of the Cockroach King, and since then, cockroaches have been trying to avenge the murder with intermittent psychological warfare. I was in Portugal when I remember seeing my first cockroach. We were on a family vacation, and I was 4 years old, walking down the street and holding my mom’s hand when I was stopped in my tracks by the biggest, ugliest bug I’d ever seen. I screamed so loudly that my mom said everyone stopped what they were doing. I was wordlessly pointing to the offending, terrifying creature. “Oh, it’s a cockroach,” my mom said. My grandpa heroically stepped on it.

This cockroach was undoubtedly the Leader of All Roaches. Since then, I’ve been able to sense when a roach is considering me with its horrible antennae. I’ve showered with cockroaches in Mexico. I’ve pulled a dead cockroach from my mouth at a restaurant. (It was buried in some rice, and we knew the sanitary aspect of this particular place was questionable.)

This afternoon, it was my terrified cockroach-specific scream (lower than my mouse scream) that my boyfriend heard when I saw a roach on the floor. He always seems alarmed at my cry, then annoyed that it’s just a cockroach. After eight years, he still doesn’t understand the subtle nuances of my vermin screams.

I stood frozen in place until my boyfriend got the Raid and sprayed. When he hit the bug with the insecticide, the roach moved. But it was from the blast. The cockroach was already dead. It had crawled into my yoga mat and died just to spite me, in one last act of defiance.

Thankfully, the yoga helped to calm me down and get rid of the post-roach heebie-jeebies. When I was supposed to close my eyes and look inward, however, I kept one eye open—just in case.

First Post-Transplant Doctor Visit and New Accessories

I’d just been thinking it had been awhile since I bought any fun accessories. Today, I bought a MedicAlert bracelet and necklace so that EMT workers know all my blood products must be irradiated. I’m not even quite sure what that means, so I asked a friend who is a phlebotomist.

“It’s kinda cool,” he says. “You take the donor blood, bag and all. And toss it in to be given a nice dose of gamma radiation….kinda like The Hulk.” I knew it.

“The big reason for irradiating blood is to get rid of white blood cells that may still be in the blood products, especially lymphocytes,” he explains. “It may be a little confusing, but here goes: Lymphocytes are a huge part of your immune response. Josie’s cells are very gullible right now. She has lymphocytes, but they don’t remember the rules just yet. They don’t know what is foreign to her body. They’ll figure it out, will just take some time. If she gets a donated lymphocyte in her, it may proliferate. OK…so you have these foreign lymphocytes in Josie’s body, they don’t recognize Josie, so they decide to attack her. You get more and more foreign lymphocytes, and they attack more and more vital organs. It’s called Graft Versus Host Disease (GVHD). GVHD is rather rare, but when it does happen, it can be fatal. That’s why they take such precautions. People with competent immune systems (the rest of us) have nothing to worry about if we get blood products. If we get a stray lymphocyte or two, our bodies’ bullies will squash them.”

So I have to get Hulk blood for the time being. Hopefully I never have to use my MedicAlert anyway.

I visited the doctor yesterday, and the news is all pretty good so far. My counts are great, so I’m on the road to recovering from my stem cell transplant. It’s just going to take some time.

In the meantime, I still have to take those precautions, like avoiding people and raw fruits. The really good news is that I don’t have to avoid the cats as much. They are going to the vet to be tested for toxoplasmosis on Saturday, but since they’re indoor cats, it’s highly unlikely they have any parasites. I’m still not to empty the litterbox in the coming months.

Upon my return home, the cats acted as I expected. The less-bright-cat-who-loves-me-more hopped on my lap and purred and has generally been unfazed by the ban on my face. He’s too clumsy to really cuddle—prone to falling off laps and chairs—anyway.

The other cat eventually accepted me as part of her territory again and this means I have no rights to space in her eyes. I am hers, not the other way around. So if she wants to jump on my face in the middle of the night, it’s her right.

We successfully kept her locked out of the bedroom for a few nights. When my boyfriend got up to take a shower, however, I awoke to a wet nose against my cheek and a sandpaper tongue on my head. We agreed that she seemed to think we were trying to keep the other cat away from us, because depriving ourselves of her company was surely a mistake—one she tried to correct by pawing at the door and meowing to alert us that she, too, had been erroneously locked out of our bedroom. It was heartbreaking for me. My boyfriend reassured me that the spoiled cats won’t be scarred by a few months of me not petting them as much.

The cat’s endearing cuddling habits had become a liability, so I’m glad the restrictions are somewhat lifted by my doctor. Staying away from cat poop is easier than staying away from the cats themselves.

Another bit of good news it that the doctor wants to switch me from Lovenox subcutaneous blood thinner injections to Rivaroxiban pills. After almost three months of giving myself injections that slightly sting twice a day—and three months to go to get rid of this pulmonary embolism—I’m over the Lovenox. My abdomen is full of hard spots from the injections, and I’m looking forward to not giving myself shots every day.

Other than that, I just need time to heal and regain my strength. To help the time go faster, I also got the OK to work from home. I have to walk more, but the weather still isn’t quite right for neighborhood strolls. I might try my walking-DVD-for-older-people this weekend.

Now that the restrictions on the cats have been relaxed, I can finally take my cat out of this box.

Now that the restrictions on the cats have been relaxed, I can finally take my cat out of this box.

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

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.

Second Round of Augmented ICE Delayed

I was supposed to be in the hospital right now, receiving my second round of augmented ICE. Instead, I am lounging in bed and catching up on work—and, of course, this blog. I have mixed feelings about this—obviously, I’d rather not be in the hospital, but it’s just a three-day respite from the inevitable. Instead, I’m going in tomorrow, just in time for the snowstorm. (One of the many snowstorms of this winter.)

I have mixed feelings about the weather too—on one hand, it makes going to the hospital and doctors’ appointments, of which there will be many, less pleasant, but on the other hand, I have to be a hermit through May, and hermitlike through mid July, when the weather is beautiful. (I expect the winter to be done by then, at least.) This is when I wished I’d skipped the Brentuximab and gotten all this unpleasantness over with in the winter. Ah, well.

Friday, I packed up my hospital suitcase full of loungewear and my blanket and headed to my doctor’s appointment before the scheduled leukapheresis catheter placement. When the doctors saw the arm with the two clots, however, they decided to delay catheter placement and my hospital stay. My arm at that point looked better than it did on Thursday, when it swelled to giant proportions. I was worried it would burst open like a piñata filled with blood, but I realized this is probably not possible.

After a night of a heating pad and menthol pain patches, my arm was still red and hot to the touch. And it hurts. Sometimes, it feels like a tiny flame is in my arm. I rated the pain a five or six, but my boyfriend told the doctor it’s an eight. He corrects me a lot at the doctor, and I always wonder if they write down what I’ve said or his opinions. I think I have to agree with him in order for them to take his into account. An eight is pretty serious though. I maintain this is a six.

In case my arm is infected, I’m on antibiotics, and I went for another ultrasound. Apparently, the clots are the same size. They’re just inexplicably more painful and annoying. So I got some more Lovenox to inject daily to try to clear them up.

I start chemo on Monday and then I have my catheter placement on Tuesday. In the meantime, they might use a PICC line for the chemo, since my veins have been less than cooperative.

On Friday,  I did meet with the transplant doctor, who gave me an idea of what’s in store in the coming months. Spoiler alert: Not much in the way of fun.

The saddest news came when she asked me if I have pets. When she found out, I have two cats, she had a list of don’ts. I can’t change the litter, but that’s my boyfriend’s job anyway. Also, she said I have to keep them away from my face until mid-July. What? How am I supposed to resist burying my face in their fuzzy bellies?

Also, one of the cats is extremely proactive about touching our faces. Just the other night, she was curled up by my boyfriend’s face, rubbing her wet nose against his cheek while he tried to sleep. I wake up with her paw on my shoulder or her face buried in my neck, or sometimes I wake up because she’s pressing her nose against mine.

The doctor is very knowledgeable about stem cell transplants and medicine, for which I am grateful, but I suspect she knows very little about cats when she suggested we break the cat of her habits. There’s no teaching a cat anything. It’s going to be a long, sad three months.

I didn’t cry when I pulled my hair out or applied duct tape to my head. I didn’t cry when I heard about my upcoming “hell week.” But I did cry about this. Sometimes, I’ll just look at the cats and tear up. It’s not even like I won’t be able to pet them. I guess it’s just a symbol of how things are going to change in the coming months. Also, I love kitty-cats.

I have to make sure all their shots are up-to-date, so luckily we just took them to the vet. They are senior cats, but in far better shape than I am right now. In fact, the female cat is in the shape of a cat one-third her age. I wish she could understand the vet, because she is vain and would enjoy this news.

Aside from the cats, I’ll have to avoid alcohol, something I had assumed was a given. Once your fast-growing cells are poisoned and you have to take anti-nausea drugs, drinking isn’t something you feel like doing. Also, after the last ICE, the nurse advised drinking at least two liters of water a day so the drugs don’t irritate the bladder and cause bleeding. So I stayed extremely hydrated, although I’d have a little coffee with milk during the second week. Of course, I’d love to hit happy hour instead of giving myself blood thinner injections. I think I could do an excellent job of thinning my blood on my own. Alas.

I’m also supposed to walk to help with recovery. Vigorous exercise is out—I haven’t done my workout DVDs since the first round of ICE and I managed to do yoga only four times since, after being thwarted by my fever, hospital stay and the arm I can’t move because of the clots. The thing is, I don’t want to walk outside when it’s cold, and there’s no sign of spring in sight. I’ve thought of getting an elliptical, but I have a small Brooklyn apartment. I do have a Leslie Sansone walking DVD that I got when I worked at a women’s magazine and edited the fitness section of the blog. The magazine shut down before I had a chance to watch it, and I’m intrigued. It could be a nice indoor walking solution that doesn’t take up much space.

I can do gentle yoga, but I’ll have that chest catheter so I’m wary of stretching. The doctor advises stretching a little bit once it’s in, but in addition to the heebie-jeebies, I can’t move my right arm much because the clots hurt.

At some point, I’m also going to get a blood transfusion.

I got a thick binder full of information from the doctor all about the transplant with fun topics like hair loss, catheter care and giving Neupogen injections twice a day. I haven’t even scratched the surface. For those asking what’s in store and my schedule, here’s an idea:

March 3–5: Second round of augmented ICE, catheter placement. I am not looking forward to having tubes sticking out of my chest. This gives me the heebie-jeebies. There will be two for the stem cell collection—one to take my blood out and the other to put it back in once the stem cells are removed and my blood spins around in a machine.

March 7–16: Neopogen injections, a catheter dressing change. We’ll do the former, but I’m glad we don’t have to do the latter. The shots to increase stem cells might cause bone pain, I’m told. They’re going to give me pain medication, but I hate taking pain medication. I don’t even like to take aspirin. I do hate pain, though, so we’ll see.

March 17–19: Stem cell collection. This involves sitting around for four hours, while your blood is taken out and put back in. It doesn’t sound so bad. During these days, I also have a flurry of tests and appointments, including an echocardiogram and a pulmonary function test, as well as an appointment with a social worker to mentally prepare me for the transplant. The best part of this process is that I have to eat a high-dairy diet these days. Bring on the milkshakes and cheese. (Greens also have a lot of calcium, so I’ll be sure to eat those as well.)

Stem cell collection might take longer than three days. They need 5 million. The record to beat is 32 million, but the doctor said that person had a lot of bone pain, so I’m OK if it takes longer. I’d like it to take only two to three days, if possible. I hope my bone marrow cooperates.

March 24: PET scan. I need a clear one to go on to the transplant, so I hope I pass! It would be nice to finally get a clear PET scan, something I’ve been hoping for since October. And I think I start outpatient radiation this week.

April: If everything goes well, five days of inpatient radiation and three weeks in the hospital for the transplant. The radiation is supposed to have unpleasant side effects, so I’m just in the hospital so they can keep an eye on me. Then the first week, when they do the chemo, is supposed to be OK. They keep referring to the second week as the bad one. Someone called it “hell week.” I’m scheduled to speak with a volunteer who has been through this to answer any questions. Also, someone left a comment on my last blog about a friend of hers who did a stem cell transplant for refractory Hodgkin’s lymphoma and is doing well. It’s always nice to hear tales from the other side.

In the third week, I start a long recovery—about three months of rest and isolation from crowds and six months until I’m 100 percent. I’m a little disappointed to hear that the first month of recovery is so intense and that I’ll need 24-hour supervision. Of course, I didn’t expect to emerge from the hospital feeling great. But I’ll have the immune system of a newborn.

So that’s what’s in store! The next steps start tomorrow, and as much as I’m wary of what’s in store for the next few months, I’m also eager to move towards the end.