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

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

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

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

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

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

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

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

phlebitis

I am in the second hour of my stem cell collection. Currently, a bag of my stem cells is filling up behind me. One lumen of my leukapheresis catheter is feeding blood to what appears to be some sort of Rube Goldberg machine, with a bunch of spinning dials, and the other is returning blood back to me.

They covered the lines for me with a blanket, because I’m a little squeamish. I accidentally took a look as the nurse drew a big vial of blood from my chest catheter and it really gave me the heebie-jeebies. Apparently, the blood is being taken out, spun around and then returned.

My stem cell bag is filling up, but I don’t know what 5 million stem cells look like. If I had to guess, like those jellybean contests at stores, I’d say I have about 3 million. We’ll see if I’m right. I have to come back every day until I reach 5 million. I’d like to be done soon, since I’m running out of places for the Neuopogen injections.

I’ve been here since a little after 8 am for a marathon of tests. They slated one after the other so I could get them out of the way before my stem cell collection at noon. Everything has gone smoothly so far, aside from my decision to take the train instead of taking a car. I thought I’d miss rush hour, but I forgot how crazy the 4, 5 and 6 trains are in the mornings.

I started with a pulmonary function test. I think this is my third or fourth one, so I’m an old pro. I wonder if my scores are worsening—not from potential lung damage, but because I haven’t been to Bikram yoga in a year, so I haven’t been doing any pranayama breathing. The test is a bit like that, without the head and arm motions. You blow into an apparatus as hard as you can and take a sharp inhale a few times, and there are a few other exercises where you completely empty and fill your lungs.

My finger also gets hooked up to a machine and I step up and down some stairs while it records my heart rate. Sometimes, I’m tempted to think of something that makes me angry to see if I can make my heart rate go up, but I never do.

Then I had an EKG. It’s the test, where they put those 3M poster-hanger things on you, followed by an echocardiogram. More breath-holding, this time with ultrasound goo and heart images.

After yesterday’s unsympathetic nurse, I finally got the reaction I wanted from the person who did my echocardiogram. “Phlebitis? Oh, I’m sorry,” she said. “That really hurts.”

Yes. Thank you. That’s all I wanted. Some sympathy and acknowledgement of pain.

My arm is even more swollen that yesterday. I have two giant, swollen bumps, one in the crook of my arm so I can’t bend it. My arm feels like it weighs 50 pounds. I usually use my other arm to move it around.

The good news is that the doctors had me pop by to take a look at it. The bad news is that they can’t do much. Since my platelets and counts are low, I can’t do blood thinners right now. (Alas! If I could celebrate St. Patrick’s Day, I could thin my blood on my own with some festive drinks!) In the meantime, I’m on antibiotics. Once my counts go up, they will consider the Lovenox again.

As for the painful bump on my belly, where we’ve been doing injections, it’s just a little bit of bleeding from the shots. It feels like a mini-phebitis. It hurts. Like a broken heart, it just needs time to heal. Sigh…

I also got a dressing change while I was there. It’s a piece of protective plastic around the chest catheter with a tape edge. The nurse has to write the date on it, and the nurse practitioner drew a shamrock on it, so I feel decidedly more festive.

The nurses at the stem cell collection room are decked out for St. Patrick’s Day. I think I have about 45 minutes left before I can go home. Since I usually spend my afternoons in bed with my laptop, not much is different aside from the big blood machine and the noticeable lack of cats.

I also had an appointment at the dental office here, so they can check to make sure I don’t have any tooth issues before my stem cell transplant and radiation. My teeth look good! I feel as if it’s the one area of me that’s not falling apart in some way.

On the way to the office, I got lost and spent some time wandering the back halls of this massive complex. When I found the elevators to leave, I realized I’d been steps from where I started, after a very long detour. I have no sense of direction, so this was not very much of a surprise.

In a few hours, I expect to get the call about my stem cell count. I hope it’s good news and that this big bag of stem cells hits the 5 million mark. I was worried I’d be a few short, but the nurse says if it’s close, it should be good enough.

We’re having pizza for dinner—just in case I need the calcium. I didn’t have lunch because I don’t want to have to get unhooked to use the restroom. I’m looking forward to sitting in front of the space heater with some food and cats.

I salute all those who have been going outside all winter. I’ve been outside a total of 10 or 15 minutes, and I can’t deal with one more second of winter. I’m ready to retreat to my hermitage until the weather improves.

Note: I feel conspicuous taking a photo here, so here is another photo of my cats.

When I began Thursday in the arms of a surprised nurse, I knew I wasn’t going to go home that morning, as I’d hoped. The nurse who had last come to take my blood pressure told me it was very low and she reminded me to call for help if I felt dizzy.

There are signs posted in each hospital room that glow in the dark with the image of a stick person taking a tumble and the message, “Call! Don’t Fall!” When I don’t have my glasses on, it just looks like a faintly glowing cube, but it should be ingrained in my head. In my last room, the bottom of the sign was cut off by a lampshade, and I would imagine it was a misspelled invitation to go back to “Calli” and catch a wave.

It might have been this whimsical thinking that got me in trouble. When I got up to go to the restroom Thursday morning, I didn’t feel dizzy. Going to the bathroom in the hospital is so much of a production, with the urine hat and output measurement. I think I managed to scrawl 500 cc on the piece of tape I where I was recording, but when I got to the sink, I was dizzy and started to see spots. I broke out into a cold sweat.

Luckily for me, when I opened the door, a nurse was standing right there. “Help,” I mumbled. “Help me. Help, help, help.” Then she was holding me upright and calling for backup.

I’m not sure that I could have made it the four feet to the bed without the nurse. Maybe. But as soon as I saw her, I knew I wouldn’t make it back, not without her help. And I knew I wouldn’t go home in the morning. They did some sort of test with things taped to me—I kept finding those 3M stickers all over me yesterday, like I was a dorm room wall. My near-fall was due to my low blood pressure and my lack of calling to avoid falling.

Of course, if the doctors wanted to raise my blood pressure, my boyfriend pointed out, they could have sent me down at rush hour to hail a cab to Brooklyn. “After you banged on the hoods of a few cabs, you’d probably be OK,” he told me yesterday, as we stood at the crosswalk and I threatened to make citizens’ arrests of the drivers halfway in the intersection.

In the end, the doctors decided to give me my very first blood transfusion, because my hemoglobin was low. So my transformation to Nosferatu progressed, as I impatiently waited for my blood to arrive. (I finally found out what kind I am: A+. The nerd in me loves that. A-plus!)

If the past day and a half had been a blur of sleep—I keep forgetting that an entire day happened—then the last few hours waiting for blood so I could leave made up for it. Time went from slipping by, hours at a time, undetected, to ticking down minute by minute. I longed to turn into a bat, fly out the window, drain a victim of my necessary blood and then wing my way home.

The blood transfusion itself was actually without much fanfare—they just hang a bag and there you are. I got my blood through my brand-new leukapherisis catheter, so that means no more IVs. Just in time, because I’m pretty sure I’m fresh out of veins. My right arm, with its painful clots, was out of the running this time, and they got one into my left for the beginning of the chemo.

For the procedure, they put in a neck IV and used lidocaine to numb me up first. As much as I worried about it, the catheter placement was actually pretty easy. I was wheeled down on Wednesday, sooner than I thought, and kept in a waiting room for a short time. Someone asked me if there was anything I was nervous about. “Mostly if I’ll say anything weird,” I admitted. She assured me I would probably sleep.

When I was wheeled to the procedure room, someone called being put out a “four-martini breakfast.” This alarmed me. I never have four martinis. I never go beyond two. I live by the Dorothy Parker quote. (“I like a martini, two at the very most. After three, I’m under the table. After four, I’m under my host.”)

I figured out this martini thing even before I heard the wise words of Ms. Parker, the first time I had three martinis. Why was it so easy to tell everyone what I really thought? Even when martinis were $3 each at happy hour within walking distance of my apartment in the Midwest in the late ’90s, I spent $8 (including tip) and called it a night. Or, more likely, I opted for a less potent cocktail after one cheap martini.

Not long after my pronouncement of a two-martini limit, I broke my rule, because someone bought me a third. That was a terrible mistake. I spent the night blithely telling people what I really thought. It’s really a mixed blessing that I remember what I said. Thought it felt briefly liberating, that kind of stuff should be bottled up, never to be loosened by a bottle of gin or vodka.

So you can imagine my reservations when  a member of catheter team announced, “OK, here comes five martinis!” Five? I think I would pass out. In fact, I hope that’s what happened. I don’t remember saying anything, not even my usual farewell to the doctors and nurses or alerting someone that I feel funny. I woke up later, bewildered that anything had even happened. (So if you have the equivalent of five martinis, there’s your urban legend: You’ll wake up in the hospital with a tube sticking out of your chest. It happened to me.)

So the catheter in my chest, and my old IV is gone. I also have Steri-Strips where the IV was and something there. A tube I think? Five martinis. Did I dance too? I wonder if the team saw me as a fast-forwarded version of myself drinking five martinis. Was I happy, then suddenly tipsy before deciding to tell everyone the operating room the truth? Did I then decide to dance or do karaoke before becoming surly, announcing I was going to lead a revolution and then passing out?

I slept all day Wednesday. Sometimes, I would wake up and think, Oh, my phone is in my hand, I should put it on the table. This happened about four or five times before I stayed awake long enough to do it. I am, essentially, being poisoned, and sleep isn’t so unusual…or so bad. I will take it over any other side effects.

I also lost my mind. Briefly. Being in the hospital is tough. I’ve tried to be cheerful through all of this, to look at the bright side, to remember this is just temporary. But everyone has a breaking point, and it’s a straw that breaks the camel’s back. Something insignificant.

After I was moved to a new room, my chemo pump/constant companion started beeping. Sometimes it’s like being moored to the Looney Toons Road Runner and you understand why Wile E. Coyote had so many anvils.

I try to do everything I can to avoid pressing the nurse call button. I’m among the more able-bodied (during my recent stays, at least) and there’s no point taking up people’s time with stuff I can do myself—especially when I have so little I have to do. (This last time, I saved all my urine for 12 hours in a container, so I finally have something to fill on those job applications that ask you for a fun fact about yourself in 140 characters or less.)

I empty my own urine hat and record everything on my door. This also saves me the small humiliation of calling someone on a sketchy intercom to say, “My urine hat is full!”—or worse, if they don’t hear, “I PEED IN MY HAT!” Plus, I’m a little afraid of the intercom people.

Part of is it that you never see them. And the other part is that you sometimes can’t hear them—or worse, they can’t hear you. So, after pressing your button, you wait. Sometimes, you just hear a click and say something uncertain, “My machine is beeping?” Sometimes, someone says, “Hello, how can I help you?” and you tell them your machine is beeping and he or she says a nurse will be alerted. That’s the best case, and thankfully, that’s usually what happens.

Sometimes, though, no one hears you. “Hello? HELLO?” you hear clearly. But they can’t hear you until you raise your voice. Then you feel like a jerk.

Also, I’m not as quick to shout when something’s wrong. (Unless I see a cockroach—then I will drop everything I’m doing and scream at the top of my lungs.) I’m more of a mutterer-and-repeater, as my early morning near-fall shows. That was also my reaction when one of my extra tubes (I’m not sure what it was, it was to keep my other machine from beeping) came undone while I was trying to untangle my machine’s electric cord and blood started coming out. I’m not good in those situations. When I see blood, I’m kind of like that kid from The Shining. As blood pooled from the tube into my hand, I thought, It’s going the wrong way. Again, a nurse was close by so my, “Um, help, help, help can you help me?” was answered promptly.

So obviously I’m not a great communicator. But once you press the button, where do you speak? I sometimes speak into what looks like an intercom, or a shout to the air.

Once I pressed my button, someone said they’d let someone know about the beeping. Then I waited for 20 minutes. I made sure it was 20 minutes, because I was scared to press again. Sometimes, during my second stay, I’d get mixed up like it was a walkie-talkie and press again as if I were signing out. They were not amused, and I was embarrassed.

When people are pressing the button because they’re thirsty or have to use the restroom, they’re often pretty weak. My first roommate would have to call two or three times. Sometimes, they hear her, I think, but other times, I could hear her and they wouldn’t understand and no one would come. She had a bit of an accent, but I’m not sure why so many of her calls went unanswered. Sometimes, I called for her.

So I developed an early fear of the intercom. And when I called again, 20 minutes later, they couldn’t hear me. “Yes? Hello?” “MY MACHINE IS BEEPING.”

Someone shut off the machine, but something inside me had loosened. I started to cry and I couldn’t stop.

In kindergarten, I almost got my finger stuck in the paper towel dispenser. Almost. It barely scraped my finger, but I started to cry and couldn’t stop. I wouldn’t stop. The teachers had to call my mom and grandparents, who threatened not to take me to Sea World later as we’d planned. I finally pulled it together after that.

I couldn’t tell anyone why I was crying though. Was it the horror of the gaping maw of the paper towel dispenser? The sadness of the world on my 4-year-old shoulders? A future premonition of Blackfish? I remember this, but I still can’t say why I was so sad that day.

When the nurse practitioner came in on Tuesday, I was still blubbering. I felt like that crying kindergartner. I was four again as I tried to explain to her and to the social worker and to a nurse why I couldn’t stop crying. They asked if I felt forgotten, slighted?

Yes, I was upset. I finally explained that I tried so hard to not be a pain and I just felt like I was, having to call and having to yell. I felt like a burden.

That, of course, goes deeper. I don’t like feeling like a burden on anyone, but it’s hard to not feel that way when you’re not 100 percent. Tuesday felt like the reaction to everything sad that had happened to me since I heard I had cancer a year ago.

The social worker helpfully started in on several theories to help me. “Being in the hospital can be hard…” she said, as I blubbered and nodded in agreement.

It’s hard. I’m going in for 26 days, and I can’t imagine it. I’ve been in a total of eight days or so—and feeling relatively well.

You’re not in control in the hospital. Sure, you can wheel yourself to the bathroom when you don’t feel like falling over and you can choose what you want to order when you’re allowed to eat or not throwing up or sleepy. But you also have to keep track of your urine and you have to call people for things like helping you to stop beeping.

Even in the best hospital environments, when everyone is trying to help you, you’re still alone with your thoughts just enough to drive you insane. Even if it’s for a minute. Or, in my case, an hour or so.

The hospital is hard—and surprisingly dry, somehow devoid of all moisture, despite my waterworks. After only three days there, my face is peeling, my lips are chapped and the inside of my nose will bleed spontaneously. My scalp is dry and flaking. I have to drink at least two liters of water daily, but I’m always thirsty anyway. No wonder they give you so many fluids while you’re there; it feels as if you might evaporate.  I feel like most of my houseplants must have felt before the cat finished them off. I am a husk.

The hospital smells weird, because it’s so devoid of smells. When I came home, the normal cooking smells coming from my apartment hall were almost too much. In the hospital, there’s the orange cleaning smell and food sometimes and then kind of this funk. It’s different from dorm room funk, but it’s a human funk. To me, it smells a little like popcorn, or like popcorn in its saddest form. I awoke from a three-hour nap Friday enveloped in the funk at home, and I can’t find its source.

For most of Friday, I would wake up for a few minutes and see the cat looking at me across the bed. We would blink at each other slowly, like two sun-drowsy alligators, and then go back to sleep. I napped with the covers pulled up to my chin so the cat wouldn’t bother my new plastic attachments. She loves eating plastic. I hope to give her enough credit that she won’t try to steal my new equipment from my chest cavity. She seems to walk gingerly around me these days. (It’s far more likely the other, clumsy cat will accidentally pull out my line.)

For emergencies, I have clips, in case my line gets compromised and I start losing my blood. It’s hard not to think everything’s out to kill me. I keep my clip close at hand, but mostly it’s the area at the root of my spine—the center of squeamishness—that suffers.

In the meantime, I am feeling good and energetic. I’m happy to be home and am hoping to avoid a hospital stay before my next scheduled one in April.

A year ago yesterday, I found out I had Hodgkin’s lymphoma. That day, if you would have told me I’d be putting duct tape all over my head a year later, I may not have believed you.

This past year has seen me do a lot of things I didn’t think I would or could do. I’ve been through six months of chemo. I’ve given myself blood thinner injections. Until this past month, I’d never been in the hospital overnight. I have nine radiation tattoos. I’ve shaved my head three times.

That last part brings me to the duct tape. On Saturday and Sunday, I noticed all my hair was falling out at once. I could just reach up and give it a slight pull, and it would easily come out.

I was thinking of just pulling it all out, and I started to do so Sunday morning, but got bored, so we decided to shave the rest off. I’m not sure who reads this, but if all your hair starts falling out after augmented ICE, just pull it out, no matter how long it takes. When I shaved it, I had stubble left. But it hurt. When I put my head on a pillow or touched my head, it felt like tiny needles in my scalp. The places where I’d pulled it out felt nice and smooth.

On Monday, I was desperate. I asked my boyfriend if we had duct tape. At first, he said we didn’t and he added that he thought pulling out my remaining hair with duct tape was a bad idea. He argued that you didn’t know what was on the sticky part of the tape. But since I’m regularly being injected with chemicals that kill all my rapidly-growing cells (including my hair and those is my stomach lining—and hopefully the cancer), the toxicity of duct tape is the least of my worries.

“We do have duct tape, but you’re not using it on your head,” he finally admitted. Killjoy.

I spent lots of time putting masking tape on my head.

I spent lots of time putting masking tape on my head.

I tried packing tape, but that pulled out only part of my hair. And then masking tape, which worked a little better. If you’ve ever wondered what it’s like to apply masking tape to your whole head and pull it off, it’s as tedious as it sounds. I would never try it, obviously, when your hair wants to be attached to your head. But I just needed to get these remaining hairs. I was obsessed.

After another night of prickly sleep, I begged my boyfriend to look for the duct tape. He really couldn’t find it this time. (Or so he claims.) And then he “forgot” to pick up some at the store. I applied more masking tape to my scalp.

Then, yesterday, I noticed a painful bump on my arm, near where one of the chemo IVs had been. I recognized this as signs of a superficial blood clot, which I’d had on my other arm during the ABVD chemo. I called the doctor and had to go in for an ultrasound and rescheduled a work conference call.

The results were two superficial clots — not serious (but painful) clots in my right arm. Since I am having a leukapheresis catheter put in on Friday, I can’t take blood thinners. (On a good note, this stays in for the remainder of treatment and my arm veins get a nice break. Overall, though, I’m really grossed out by having tubes sticking out of my chest for a few months.)

The doctors told me to apply warm compresses to my arms. I forgot to pick some up, so I’ve been thinking about applying the cats after they’re done sunning themselves or after the big white cat is done absorbing the heat from the space heater.

What I did pick up on my way to the ultrasound, however, was duct tape. (And a Snickers egg. Snickers are my favorite candy bar, but they lose something in egg form. I think the carmel, nougat, nut and chocolate ratio is compromised.)

Free at last!

Free at last!

Upon returning home, I triumphantly applied duct tape to my head (and ate half of my Snickers egg). And — just as I thought — it removed my hair. I am free of stubble and smooth-domed. I’m pretty sure my hair won’t grow back until May or June, so this will be my look for awhile. And, unlike last time, nothing is left of my hair.

During this time of baldness, I’m always kind of at a loss of what to do in the shower. The majority of the time is spent washing my hair and shaving. I could take up singing my bald theme song, but I don’t have a very good voice. I’ll probably just exfoliate.

Despite his reluctance to assist me in applying duct tape to my head, my boyfriend assures me that I’m not funny looking. But I had been reluctant to wear one of my usual sleep T-shirts, and I couldn’t pinpoint why. It has the logo of Cleveland goth band Lestat, with a depiction of Nosferatu. I inherited this T-shirt in high school from a friend’s older sister. Today, when I looked in the mirror while brushing my teeth, I realized that there were two bald people with prominent ears displayed in the reflection. After I emerged from the bathroom, my boyfriend looked at my shirt and then at me and said, “Hey, you kind of look like…”

That guy on my T-shirt looks familiar...

That guy on my T-shirt looks familiar…

“I know,” I said. I’d hoped if I ever looked like a vampire, it would be one of those sexy, preternaturally good-looking Anne Rice characters. I suppose this is what I get for those years of being goth, emulating that vampire look: Nosferatu. Be careful — or very specific — about what you wish for.

Speaking of vampires and blood, my blood pressure’s been very low. I’m not sure why. If I had to venture a non-medical guess, I’d say it’s because I’ve been pretty calm and haven’t been in public much. My blood pressure’s usually a little on the low side, but I wonder if my Frank Costanza-like short fuse raises my blood pressure and keeps it normal. (Serenity now!) I’m not sure what I should to do raise it, other than stew about topics that upset me, like flip flops on the train, Doritos Tacos Locos or that new Kevin Costner movie that looks so bad it makes me angry that Hollywood continually expects us to watch some of the terrible films they keep making.

Aww...

Aww…

In the meantime, I haven’t gotten around to applying a cat to my arm. But this evening, my arm clots really hurt. As I whimpered and cried as I tried to extend my arm, one of the cats came over and put her paw over my hand and licked my knuckles. (Aw.)

To his credit, the other cat is not without his own sweet gestures. A few weeks ago, I felt a little overwhelmed by everything and just put my head down, face-first on the bed. I was about to cry when I felt a sandpaper tongue on my head and a paw patting my head. I suppose it’s possible I had crumbs in my then-short hair, but I’d like to think he was comforting me. He may never understand how to get treats out of his toys and he may lack feline grace and fall off the couch a lot, but he’s a sweet cat.

Obviously, this is not where I’d like to be a year from my initial diagnosis. I wish the six months of ABVD had cleared up the cancer. I’d rather not have refractory Hodgkin’s lymphoma, The hardest part of treatment still lies ahead, in these coming months. Yet absolute ridiculousness of covering my head with duct tape and looking like Nosferatu is at least keeping me from taking myself too seriously on what could have been a very sad anniversary.