Yesterday I found myself back in the chemo chair in a familiar treatment room at Memorial Sloan-Kettering Cancer Center to receive a dose of Reclast to treat my osteopenia, decreased boned density that’s a long-term side effect of my Hodgkin’s lymphoma treatment and radiation. (It was one of the fun facts I learned right around the time I found out about the neuroendocrine tumor so this was put off until after my Whipple procedure.)

Shortly after the nurse hooked up the IV with saline, I felt a little dizzy. Suddenly, I couldn’t breathe. My head felt like it was filling of fluid and about to burst, and I had to move it from side to side. I felt like I lost control of my body. I was sweating and nauseated. My eyes couldn’t focus and everything was blurry, like my eyeballs were in a cocktail shaker.

A panic attack. My first in nearly 10 years. It was even worse than I remembered.

For those who haven’t had a panic attack, it feels like you’re dying and losing your mind at the same time. As I’ve said before, panic attacks are really misunderstood. Some people say things like “I was totally having a panic attack,” but unless you feel like your body and mind are rebelling against you at the same time and you have no control, then it’s probably not a panic attack. It irritates me when people say they were having a panic attack when they were just freaking out the same way it bugs me when people often used to say they were “literally dying.”

Well-meaning people who try to understand will try to soothe you and remind you that there’s nothing to worry about and to be calm. That is nice of them, and it’s true, but it doesn’t help much in the moment. Panic attacks aren’t really necessarily induced by an obvious stressor or worry, even—it’s the body going into fight or flight mode for seemingly no reason at all. One moment, you’re sitting around waiting to get your tire changed and then next moment you feel like your body is shutting down and your brain is trying to flee your skull. When I had my first panic attack more than 15 years ago, I developed panic disorder, meaning that I was so afraid of losing control and having a panic attack that my phobia kept inducing them. It’s essentially a fear of fear, and it becomes a self-fulfilling prophesy, a cycle of panic. After a few years of therapy, medication and research, I finally left panic attacks behind, until yesterday.

I knew what was happening almost immediately. “I’m sorry, but I think I’m having a panic attack,” I told the nurse as I started to gasp for air and roll my head from side to side. “I feel like I’m going to pass out.” She asked if I needed crackers, but then the nausea set in. “I feel like I’m going to throw up.” I remember her putting a pillow behind me and asking if I could move forward, but at that point, I felt like I had no control over my body, and I couldn’t move. After asking what she could do, I think I told the nurse I just had to wait it out. I can’t quite remember. I know she told me that we would wait and that I should call her with my button when I was feeling better.

I know I cried. I felt helpless and I was annoyed with my body for betraying me yet again.

Logically, I knew I would be fine. There are worse places to have a panic attack than a room with your own nurse. I didn’t pass out, but in a weird dissociative state, I don’t remember things. I have no idea how long it lasted—somewhere between 10 to 15 minutes and an eternity. When I started to get my bearings back, I realized I had a plastic bedpan in my lap in case I threw up and I had been wrapped in a blanket at some point.

Even though I knew I would be OK, getting through it was completely miserable experience I could go another decade without—the feeling of losing control of my body, feeling like my head was filling with sloshy liquids, the inability to focus my eyes. A panic attack isn’t all in your head, the way some people think it is. It’s a physical reaction that is out of place. Kind of like an allergic reaction. Your body thinks it’s helping you, but it’s actually creating a problem.

I was nauseated so my body could rid itself of food and flee quickly. The vision changes, the increase in heart rate, the constriction of muscles were all to prepare me to escape danger. It’s something that might be helpful if I were running from a mountain lion, but not necessarily of any use to me when I am hooked up to an IV.

Afterwards, I was drenched with sweat and had a headache. My eyes ached from feeling like they’d been removed from their sockets, inserted into a snow globe and shaken up. When I stood up later, I was unsteady and my legs were wobbly.

Though part of what makes panic attacks so maddening is their random and unwelcome surprise appearances, this one does kind of make sense. I was in a place where I felt safe, but those chemo infusion rooms hold a lot of memories. They are where I started treatment years ago for what I assumed would just be six months. Until I arrived yesterday, I had thought the Reclast would be a shot, and I didn’t expect to be hooked up to an IV. I could see why being there, hooked up to an IV again, my body decided it wanted to flee. After all, the last time I was in that situation, I was essentially being poisoned, even it was for my own survival.

I’ve also said that when you have cancer, people understand what’s wrong to a degree, and offer you sympathy, but when you have a panic attack, people often just tell you to calm down and you feel like a crazy weirdo. Both are instances of a strange body betrayal—a disconnect between your physical being and your will. Both can make you feel helpless, in different ways.

This time, I had the luxury of having only a nonjudgmental nurse as a witness, and I was already at a medical center, a comfort when you feel like you are dying. I hope my days of panic disorder are completely behind me.

I grabbed my bedpan to take with me on the train, figuring that I could put it in my lap if I felt queasy again. Also, maybe people would give me a little bit of elbow room if I had a bedpan, but it’s hard to phase people here.

After several years of my squeamish self enduring tubes, IVs, needles, catheters, surgeries, transfusions, transplants, and all sorts of procedures without panic, I was finally undone by an IV full of something to help me uptake calcium for bone health. At least it seems my body has a sense of humor.

After months of illness, it’s hard not to sometimes bitterly take stock on what you’ve missed out on. Today, I heard about something else I can’t attend while I have the immune system of an infant, but I’m OK with it. Other opportunities will arise.

There are some days when I’m not OK. I’m tired of being poked and prodded and not getting on with my life. The most frightening thing to me is the thought that this stem cell transplant and radiation didn’t eradicate the cancer and there will be no getting back to “normal.”

I don’t want cancer to become my life. But for some who have stubborn cancers, it can end up being something you live with for a while versus something you get over. I’m not sure if I’m strong enough to do the former, but there’s a small chance I might.

What I’ve lost, I can get back—for the most part. I’ve been robbed of some time. But when I look back at what I’ve lost, I can’t help but see what I’ve also gained. Not that I’m one of those everything-happens-for-a-reason people. I honestly don’t think that everything happens for a reason. If anything, I’ve always personally been more of an existentialist.

I’ve said this before, but I don’t think I needed to get cancer to give me any fresh perspectives on life. I was doing just fine. Dealing with this has changed me a little bit, but I still don’t think it had a profound impact, not one that I can tell. I already appreciated life and what I had. I didn’t need to slow down. I didn’t need this.

That’s not to say I didn’t learn anything, though. It doesn’t mean I can’t see some silver linings to my clouds. What have I gained? Most importantly, I hope it’s a cancer-free prognosis. I’ll find out in August if that’s the case. After more than a year I’ve treatment, I’m beyond over Hodgkin’s lymphoma. I just hope it’s over me.

What I’ve gained:

Mental strength. I’ve lost weight, and most of it is muscle. When I look at my wasted body, I try not to mentally calculate the hours in plank or in utkatasana it’s going to take to get me back to form. Right now, I’m walking to keep my energy up, and I’m probably going to start to do walking DVDs and extremely gentle yoga.

What I’ve lost temporarily in physical strength, I’ve gained in mental strength from enduring the treatments. As I mentioned before, I was perfectly happy suspecting I might be weak if it meant I could go untested. It turns out I have a little bit more fortitude than I thought.

I’m extremely squeamish. I don’t faint at the sight of blood or anything, but I generally don’t like to think about bodily functions or fluids or anything to do with the inside. But I’ve endured things like tubes in my chest and IVs in my arms. I’ve given myself injections. I can do some of this squeamish business; I still would prefer not to.

A sense of hair adventure. As I mentioned, I feel smug and superior when I see women’s beauty advice pop up in my Facebook feed, since it no longer applies to me. I don’t need to know how to have glossy, voluminous hair or know how to get curly, long lashes, since I have no hair or lashes.

Of course, I never worried about it much before, either, so my hair loss really hasn’t bothered me much. I would wash my hair and occasionally brush it, but I would never blow-dry or put any products in it. Sometimes I’d get a dreadlock and cut it out. I feel like there was some sort of session about being a woman and caring about beauty concerns that I missed as an adolescent.

I didn’t wear makeup until I was 25, at the urging of a friend who told me it was good for job interviews and looking professional. She took me to a few beauty counters, where I discovered they make you up for free (!) in hopes that you buy their products. I feel obligated to buy everything from people who work on commission, so I never take advantage of this. Anyway, that’s how I’ve applied makeup since—just simple eyeliner, shadow, lip gloss and blush. I draw the line at concealer because I don’t see the point of putting something that looks just like my skin over my existing skin. If I’m going that far, why don’t I just wear a mask and call it a day?

I stopped wearing makeup at 13, because I hadn’t known how to apply it. I’d put eyeshadow on my eyes and then, inexplicably, I’d put a swath under my eyes. No one told me I was doing something wrong until a fateful day in the lunchroom freshman year of high school, when a well-meaning friend asked me what was wrong with my eyes. I’d put pink eyeshadow above and below my eyes, creating bright pink rings. For some reason, I thought this made me look better.

“Nothing,” I said.

“But your eyes are all red,” she insisted.

“That’s my makeup,” I replied. It then dawned on me that I really must look like something was wrong with my eyes, because she seemed genuinely concerned.

“Oh,” she stammered. I must have looked hurt, and I think my other friend must have looked defensive on my behalf. “I just thought… It looks… I didn’t mean…” I will take the apologetic look on her face with me to the grave. Now she thought that I thought she’d insulted me on purpose. It was that point where someone has accidentally insulted you and that person visibly feels so bad that you feel worse for the person than yourself.

What she did, however, was helpfully shape my life for the next dozen years. I went to the bathroom, looked at myself in the mirror and washed off my makeup and didn’t put any on again for more than a decade. I didn’t know how to wear makeup, so I just mercifully stopped. Sometimes I’d dabble, but I had no interest in really learning, until my friend took me into the mall to finally help me learn how to apply makeup.

So my beauty routine falling by the wayside is a bit of a relief. I’m not big on wearing my wig. All my little cancer hats are in the wash, so I’m wearing a do-rag like Bodie Broadus from The Wire, and I’m totally fine with it. I’ve been tying my do-rag with a bow in the back, and I’m kind of hoping it catches on in the street. I’m going to sit out on my stoop more so the guys from the neighborhood can see and emulate.

I wish I could say that my aversion to makeup is some sort of feminist statement, but I’m just lazy. Also, I believe in setting expectations low. When I do wear makeup, people compliment me on how great I look. (Almost to the point where I wonder how hideous I may usually look, but just shy of that point.) My attitude is: This is what I really look like. Deal with it. If you’re special, one day I’ll make myself up nice for you.

This is what I look like now, and I'm OK with it.

This is what I look like now, and I’m OK with it.

I think I look OK. I’ve looked better, for sure. But I probably looked worse when I put eyeshadow under my eyes. That may have been my low point.

As someone who has had the same hair style forever, this has made me more adventurous in that department. I’m looking forward to trying short hairstyles, like that girl from the Halt and Catch Fire previews (but brunette) or maybe the Claire Underwood (but only if it makes me ruthless).

A sense of mortality and health. This one’s tough. When I was getting the radiation explained to me months ago, I almost cried when the nurse told me that I’d have to eat heart-healthy and exercise for the rest of my life.

It wasn’t the eating plan and workouts that made me sad. I eat generally healthy anyway, though I eat more candy than I should. (If I could sustain myself on sugar, I would.) And I enjoy working out. It was the permanence. For the rest of your life. The radiation doesn’t come without consequences—and they’re lifelong. My heart and lungs are a little weakened from being zapped. I’m at higher risk for some cancers later on.

I’m losing things that won’t come back. I might go through menopause very soon. I have to take extra efforts to be healthy because of what my body’s gone through. Things got real right then.

Even more perspective on how great my friends are. I’ll lose some gardening time this summer. As it turns out, everything I love—cats, gardening—can give me toxoplasmosis. I’ve gained some garden helpers who I can supervise over my garden plot this year.

In fact, I’ve gained a lot of help and support—more than I ever expected. The outpouring of kind words has been humbling. I don’t know what I did to deserve such a great group of friends, but I’m going to try to keep doing it. I’ve been inundated with cards, thoughtful little gifts and well-wishes. And, in many cases, it’s been from people I’m not always in touch with, so it’s been nice to reconnect with people. Even though the Internet is junky and boring these days, I’m grateful that social media lets me be in touch with so many people. Being sick is no fun, but it’s really shown me what a great network of support I have around the world!

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

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.

The good news is that I finally have my hospital admission date: April 13.

I suppose unknown news isn’t really news. The outcome is the same, and things are proceeding as planned. But after the MRI, the doctors still aren’t quite sure what’s lighting up on the PET scan. They think there’s a 75 percent chance it could be Hodgkin’s lymphoma, which is strange, because it’s not in my lymph nodes, but it my pancreas. The other 25 percent is a big question mark. Inflammation? It doesn’t appear to be pancreatic cancer or another pancreas issue, according to the MRI.

There was talk of doing an endoscopic ultrasound and biopsy this morning—in fact, I had one scheduled for next week. But after some thought, it was cancelled. The biopsy would sample only a very small part of the pancreas—possibly not enough to tell if Hodgkin’s lymphoma was present. It also might not rule out other possibilities enough that they could tell what exactly it is. And doing a more invasive surgery at this point doesn’t make sense.

The radiation doctor was going to radiate this area anyway, so everything is going to go as planned. Five days of outpatient radiation begins on April 7, and then the hospital stay and everything it entails begins the following week.

I’m disappointed that there’s still an unknown bit of possible cancerous something lurking as I go into transplant, but I’m also relieved that this doesn’t push back treatment too much. I want to get this over with. I am as impatient as this cancer is stubborn.

Photo note: I have no photo of my pancreas on hand, so here is a photo of my cats taking an IQ test.

Well, I still have that pulmonary embolism. But my doctor called today to say that after the radiologist took a look at my PET scan, there’s a chance I might be lymphoma-free after all!

This is good news. Overall, the doctors are pleased. However, I have a glowing orb in my abdomen. I have an MRI scheduled for Thursday so they can get a better idea what’s going on. I don’t know much about MRIs, other than they’re boring. Someone I know said it’s like listening to Nitzer Ebb while being still for a long time.

My pancreas has been mentioned. I’m not sure what its problem could be.

Maybe the MRI will find an ingrown twin. Or discover why I have an extra rib. (After more than a year of endless appointments and tests, no one has mentioned it, so I guess it’s not a big deal. Maybe I’ll finally ask about it.) Maybe it’s the source of my power. Maybe it’s untapped potential. Maybe it’s my tiny, shriveled soul. Or gum I swallowed, though I’ve swallowed maybe only a piece or two over the years.

This does possibly change the course of my radiation treatment, so everything is on hold for a bit until Thursday and Friday, when the doctors go over what they find.

So I’m still not sure when my hospital stay begins. I am meeting with my doctor on Friday to go over the MRI and ultrasound results. (I’m also going to get leg ultrasounds to look for more clots, and I forgot to ask if a possible filter placement would delay anything.) If everything goes as they think it will, then I’ll probably meet with the transplant doctor on Monday, and it’s possible I’ll start radiation later that week. So we’ll see.

Odds for staying cancer-free are better if you go into the transplant with a clear PET scan. The best-case scenario is that it is not Hodgkin’s lymphoma anymore, and I just have a glowing belly orb.

UPDATE: A friend says it’s probably a glowing heart light, like E.T. This would also explain why I love Reese’s Pieces. I’ll alert the MRI technicians.

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 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.

If you would have told me that, at 36 years old, I would drink a few cups of red stuff that promised to be radioactive and then get nine tattoos, I would have been surprised. That seems like something that should have happened in college, when I regularly consumed drinks with names like Windex, the Bettie Page and Mind Eraser. I was 20 when I got my first — and only, until yesterday — tattoo, a small Libra sign on my shoulder.

The whole experience of my PET/CT scan and radiation prep was a little like being in my early 20s. At one point, people drew on me with markers, like I was the first guy to pass out at the party. I also spent some time lying in a bag full of chemicals with a piece of masking tape holding my chin up, as if I were some sort of performance artist. (This also seems like something I could have done for an artist friend — I can see someone asking me to lay in a bag of chemicals to make a mold and agreeing.)

What’s even more surprising is that I had forgotten a lot of this was supposed to happen yesterday. It was all explained to me a few weeks ago, and then I promptly forgot about the tattooing and molding part of my radiation oncology appointment.

When I arrived, I changed into a navy hospital robe, which I later discovered was the less chic of the two versions available. While others seemed to have sleeker gowns with white piping, mine was a plainer, droopier version. I’d noticed the other robe in the pile in the dressing room, but had thought it wouldn’t make much difference. Perhaps I am placing too much blame on my robe. I’m not very good at tying the back, and I have a knack for looking slightly disheveled, even when I’m wearing clothes with buttons and zippers.

Sitting around in robes with a bunch of other people with shaved heads and cropped hair makes me feel as if I’m a monk.  Or maybe in a cult. Wait in these outfits we’ve provided so we can make a mold of your upper body, then we’ll give you a red drink and tattoo a symmetric pattern on your body.

The initial explanation of the mold sounded like I was going to be vacuum-sealed, but I laid on top of a bag of warm chemicals for about 15 minutes until it hardened to make a mold for future radiology appointments. They put a piece of masking tape across my chin and attached either side to my arms, which were above my head. All those savasanas at the end of Bikram yoga class came in handy as I had to lie still.

My veins remain tiny and uncooperative, but the nurses found one for the IV. Then it was finally time to drink the red fluid. “Raspberry,” the nurse noted. Again, I asked if there were other flavors, but no, that’s it. After not eating for more than six hours, I find myself looking forward to my raspberry radioactive beverage.

Then it was time for the CT and PET scans. Since the contrast injection sometimes burns, they slowed it down a bit for me. (Last time, it caught me off guard when it hurt.) They checked on my comfort, but since my chin was again taped and strapped up, I could mostly just grunt that I was OK. The worst part of the scan, for me, isn’t even staying still for so long; but it’s hard not to fall asleep. When I do start to nod off, my arms move then I wake up, alarmed. So I’m usually left a little drowsy.

I was nervous about the tattoos. I should mention that I passed out when I got my first tattoo, the little Libra symbol. The tattoo artist had told me to let him know if I felt nauseated or light-headed. “I feel funny,” I announced, and then the next thing I saw was the bottom of a bucket, which my head was in. I emerged from the bucket to see the friend who had accompanied me, red-faced and laughing with unbridled mirth. The tattoo guy said that people pass out from an adrenaline rush and he’s had 300-pound linebackers pass out on him. It’s possible that he was lying to make me feel better, but he didn’t seem like the type.

Still, I hadn’t had the desire to get more tattoos. I just couldn’t think of anything else to get, or where to get it. Even when I dressed at my most outrageous, there’s a sense of conservatism that pervades my wardrobe. Ever the goodie-goodie, even when I’m trying to be cool. So when it came time to get a tattoo, I wanted something that could easily be hidden. I was mindful that I’d need to get a job someday. Now, of course, tattoos are more acceptable, but even then, I wanted to be rebellious in the most cautious way possible.

“How many?” I asked yesterday, as they took measurements and drew on me with markers.

“Nine,” was the reply. Nine?

“Is this going to hurt very much?” I asked. It was the same question I posed years earlier to the man wearing a leather vest with sleeves of tattoos (before I passed out). That guy had assured me that if it hurt too much, people wouldn’t go back for more tattoos.

I was assured it would hurt less than the tattoo I got 16 years ago and even less than a finger stick. I expected some sort of fancy tattoo gun, but it looked more like an ink pen. “Like a prison tattoo?” my boyfriend asked later.

I guess. I’ve never been to prison. I imagine this was much more sanitary. But it didn’t hurt much, to my relief. I got three down the middle of my body, two on each side and two on my legs. They explained that they don’t want to make them too big, as they’re permanent, but they also have to be able see them during your radiology appointments. They’re small dots, like the one Tom Hanks got in an episode of Bosom Buddies to impress Sonny when he got drunk with Amy. (Perhaps my fear of tattoo pain stems from watching this episode that apparently left quite an impression on me as a child.)

The next step is to wait for the doctor to call with the results. I have a confession: I can view the results now online, but I’m going to wait for the doctor to call. I may have 10 tattoos, but I’m not tough enough to read the lab results on my own.