2013 November :: A Pain in the Neck | My experience with Hodgkin's lymphoma (& neuroendocrine tumors)

Giving Thanks

This won’t come as much of a shock to those who know me, but I’m not usually one to make gratitude lists. It’s not that I’m not grateful. I try to realize how lucky I am every day. But my Facebook feed is more likely to have my top 10 Halloween or summer songs than a Thanksgiving gratitude countdown.

In light of this crazy year, however, it’s probably a good time to keep track of all the things I have for which to be thankful. There are many. Plus, according to this article on gratitude, being thankful is beneficial to health and happiness, and every little bit counts, I guess.

All of you. Shucks. I mean it. Words are my business, yet I don’t have enough to show my gratitude for your kind words, visits, emails and notes, and your outpouring of generosity and support. So these two will have to do: Thank you! I’ve always known that I’ve been very fortunate to meet amazing people over the years, and the last six months have just shown me that I’m right!

I’m also grateful to my family and, of course, to my boyfriend, who has accompanied me to appointments and put aside his squeamishness to see IVs put in and blood drawn. He tries to do his best when I’m at my worst and am depressed, sad or scared. He’s stepped in wherever he’s been needed, from shaving my head to stopping me from assaulting cabs after surgery.

I’m in good hands. My mind is at ease knowing I’m in the hands of the capable staff at Memorial Sloan-Kettering, from my oncologist to the nurses who have to find my veins to the friendly front desk staff. It’s not only that they’re good at what they do, but everyone’s always nice and upbeat, and when you’re in a fairly scary situation, it makes such a difference. (Especially after going to a few places during the beginning of my diagnosis where I wasn’t treated with respect or even as a person.) I was talking with a few people at the Visible Ink Fall Writing Festival for patients (more on that in another post) about this and we all agreed we always felt reassured that everyone there was taking good care of us.

I have health insurance. After the company I worked for folded this summer and I went freelance, things looked a little grim when I found out that I wasn’t going to get COBRA, as promised. But it looks as if I’ll be insured through the rest of this year and will get a new plan next year. I can’t imagine facing the transplant without insurance.

I have work, and this is the view from my office. Job searches are the worst. Losing my job this summer, while I was in the middle of chemo, gave me more time to dwell on everything, and looking for work while you’re not feeling 100 percent is even less fun. While freelancing is always a little uncertain, I’ve had the chance to work on some fun stories and projects and to work with some great people. My old sometimes-office several years ago had a view of the Chrysler Building, but working at home in pants without zippers and with feline assistants is pretty great. And my boyfriend has a new job as well, and he works mostly from home too.

I live in the greatest city in the world. New York City is my favorite place. This wasn’t always the case. When I first visited in the mid ’80s, a 9-year-old from the suburbs didn’t quite appreciate it. My grandma always loved NYC, and I wish she could have seen me move here. She may have even joined me! I haven’t been able to travel much during treatment. The docs want you close to the hospital, just in case. But I can’t think of any other place I’d rather be. (In January and February, however, I’d probably like to be somewhere tropical, but right now, I’m OK with staying put.)

I can work out again! (For a little bit.) I was taking it easy the last few months of ABVD, and for the past month, I’ve been easing back into a routine with a few kickboxing classes here and there and yoga at home. I’m still under orders not to overdo it. And I’m still supposed to avoid germs, so I won’t be joining a gym (or maybe even going back to boot camp) for awhile. Sadly, being around so much of other people’s bodily fluids is also off the table, so Bikram yoga (my absolute favorite type of yoga) is still on hold. But I am going to a few classes where I don’t have to touch equipment, and I have my home workouts to do. I’ll obviously have to take three weeks (and longer after that) off from working out. These long stretches of not exercising from chemo, surgeries and procedures aren’t ideal, but I’m going to try to build my strength up for the next few months for the fight ahead.

I have control over the space heater. Mostly. I came across this study that found cold environments make cancer cells spread faster, and that’s my argument this winter for when I position myself between the apartment heater and the space heater like a slice of bread that needs to be toasted.

I have a new bath mat. This probably doesn’t rank with the others, but our old bath mat towel was in pretty bad shape. And this is coming from someone who never buys towels. I had maybe purchased a few in my adult life, but until I acquired my boyfriend’s towels, I never knew towels could be so soft and thirsty and good at drying things. I don’t remember my family ever buying towels. I know they did at some point in the early ’80s when they went to a Cannon outlet. They don’t make towels like they used to. And they don’t make cheap towels like they used to, either, so you can see my reluctance at buying a new one. (If I had a time machine, in addition to going to see great bands in their heydays, I would also pick up some towels.) So the purchase I made yesterday, to avoid Black Friday madness, is a pretty big one for me.

I know there are things I’m leaving out. This latest treatment doesn’t have many side effects, so I hope to have as normal a time as possible before doing the stem cell transplant. And even with the ABVD this summer, I managed to go to concerts, to the beach (shaded by an umbrella) and generally do my favorite things. My preferred winter activity is staying inside, so I’ll be relaxing. Aside from the whole cancer thing, I still feel like one of the luckiest people ever.

Biopsies, Bone Marrow and Brentuximab

Well, I’m not going to bury the lead, as we would say in journalism classes. My surgical biopsy results are what I expected, but not what I hoped, and I still have some remaining Hodgkin’s lymphoma. The official term is refractory. I started chemo again yesterday.

The usual second-line treatment is ICE (ifosfamide, carboplatin and etoposide), administered over three days in the hospital, twice, 21 days apart. Instead, I’m taking part in a clinical trial of Brentuximab vedotin, a fairly new drug that’s being studied as a less toxic alternative to ICE and a line of treatment doesn’t require a hospital stay.

The goal is to get a PET scan that shows no activity before an autologous stem cell transplant (ASCT), a three-week hospital stay that involves high doses of chemo. Beforehand, stem cells are removed from your own blood and preserved, then given back to you after chemo to prevent bone marrow failure and produce healthy new blood cells. (This part doesn’t sound like any fun at all.)

I really just want to get it over with, so my initial leaning was ICE. The Brentuximab vedotin’s side effects include a hand/arm rash, which sounds OK to me, but there’s also neuropathy, something I’ve been experiencing lately. My fingers suddenly go numb and turn a waxy yellow color, especially when it’s cold. The doctors think it might be a circulation problem left over from the vein irritation of the ABVD.

And then there’s the vein damage. The other day, the term “like trying to get blood from a stone” occurred to me, as the nurses tried to get blood. I may as well be made of granite. They even got the veins, but they just wouldn’t give up any blood. And when things are injected now, it hurts more often than not. My veins are cranky, and the treatment is every week for three weeks, with one week off, over the course of three months. Even though this treatment is less toxic, I feel for the nurses and my veins, which have always been proclaimed “tiny” and are now staging a rebellion against being poked and punctured any more.

So I’m slated to get a port—something I’ve been avoiding. I still want to avoid it, in fact. I’m not sure why—most people say that there are no restrictions on exercise. I probably should have had one put in before my veins were so far gone, but I didn’t anticipate more treatment. And it’s not like I’m not used to having a weird bump near my neck; that’s how this whole thing started.

There’s the chance that after three months of treatment, I’ll have to do the ICE anyway. I don’t know why I feel pessimistic. The last treatment didn’t fully clear the cancer, but I’m in a study with my fellow unlucky refractory/relapsed peers. Can I be among the luckiest of the unlucky? Or be doubly unlucky?

Yet I’m going to take part in the study, hoping that I can avoid more time as a hospital patient than necessary.

I found out the results of the surgical biopsy last Friday evening. By the time I left the doctor’s office, it was after 7, and I was meeting my boyfriend at 9:30 in Chelsea to see a movie. I decided it wasn’t worth going back to Brooklyn just to turn around and come back to Manhattan, so I found myself walking from 64th Street to 23rd Street—a therapeutic, mini-tour of Manhattan that took me past Radio City Music Hall, Bryant Park and Herald Square.

It also took me past the Uniqlo flagship store, where I bought a tunic turtleneck, to cover up my still-healing mediastinoscopy wound for when I went into the office. You don’t realize how many turtlenecks you don’t own until you have a bloody bandage on your neck. The mediasinoscopy went well, though I felt it a little more than my first surgical biopsy. I didn’t even have the energy to assault any cabs that wouldn’t take me to Brooklyn right afterwards.

This time, however, I was aware of the weird feeling before the anesthesia. Whatever they give you before that makes you feel funny, then not remember anything. I still worry that I say the worst insults I know or exclaim horrible things during this not-remembering time. I have no idea why I would do this, but I worry anyway. Some of the last things I remember saying, as I pointlessly struggled to stay cognizant, were, “I feel funny again, like last time,” and, “Goodbye, everybody!” to the staff in the operating room before slipping off.

The weekend was a bit of a whirlwind, since the site I’ve been working on launched Tuesday. I worked all of Saturday afternoon and on Sunday, from late afternoon until midnight, so I feel as if I didn’t have time to process the news. But I would say this past summer’s time of unemployment was far worse. I don’t need time to dwell.

Unfortunately, it finally sunk in as I lay in bed on Sunday night. While my eyes felt strained and sleepy as I finished work for the day, they kept flying open as I struggled to fall asleep.

So the website launched on Tuesday, while I was launched into a series of appointments and tests. Since Hodgkin’s lymphoma doesn’t usually spread very rapidly, I could take some weeks before starting treatment again. But I’m staying here for Thanksgiving, and there’s no point in delaying the inevitable. I’ve had a little over month of near normal life again, and I don’t want to get used to it again, just to have it taken away.

I needed to take tests I took before I started treatment last time. On Tuesday, I had an echocardiogram, bloodwork and a PET/CT scan. During the echocardiogram, I had time to once again ponder hospital gowns. One of my friends who recently had surgery wondered why they had pockets. Someone suggested it’s for equipment and monitors, while someone else gave the explanation of hospital trinkets. I assume I will earn some trinkets during my three-week stay.

Before my PET scan, instead of the premixed red Gastrografin drink, the nurse mixed it himself—water, the dye and the red raspberry flavoring. So I finally had the opportunity to ask if red raspberry was the only flavor: It is. (One of my burning questions answered.)

I had a CT scan this time, too, like I did before starting treatment, so I had to get another injection. It stung a bit, and my legs automatically flew into the air and pedaled a few times, helplessly trying to flee, unaided by the rest of my body, which was strapped, hooked and wedged into place. It hurt only for a little bit, then the feeling I from the last CT scan kicked in. The nurses describe it as feeling as if you have to pee; it’s warm, like you’ve been drinking whiskey through your belly button.

I also had to have another bone marrow biopsy, which sounds much worse than it is. After I had my first one, I read a few cancer patients’ blogs that said they weren’t offered any numbing agents. I don’t know why anyone would do that, but if someone said they were going to poke around inside my bones without any lidocaine, I’d run away.

Oddly, the lidocaine is the worst part. The injection stings, and there’s another that’s a bit deeper that feels strange, but stings less. The actual collection just feels weird—a deep pressure, and a bit of a hollow feeling. They take it from your lower hip/back area, and it’s just a bit sore for a few days. The first time I had to have it done, my oncologist said she could do it right away, there in the office, adding that she likes to do it that way, so people don’t have time to think about it. I agree—thinking about it is much worse than the actual procedure.

After my barrage of tests, I had a day off (from tests at least) on Thursday, when I had sushi for lunch and oysters for dinner. My old dietary restrictions are back: No raw food out, no sushi or oysters, no cold cuts.

Friday, I saw the doctors and started treatment. The Brentuximab itself takes only half an hour, and there are supposed to be very few side effects. I was kept an extra hour to make sure I didn’t break out into a rash.

So that’s where I am. I started this post almost a week ago, and I haven’t had a chance to finish it—and then I kept having more to report. Thanks to all who have checked in and sent letters and notes of support!

I admit that when I returned home on Wednesday from my last round of tests, I had a good cry and threw myself a little pity party. This has been like seeing a light at the end of the tunnel, only to find out that it’s not a way out, but instead a shaft of light coming from far above, an unreachable place. So I have to choose another dark tunnel, knowing that there’s a light at the end, but I’ll have to scramble over some unknown, sometimes frightening, territory. Friends and family will offer bright spots along the way. Months from now (how many, I’m not sure), I’m slated to arrive at the end of this journey many others have taken. Temporarily worse for the wear, but finally free.

Halloween Heisenberg

As a former goth girl, Halloween has always been a special time for me. It’s when everyone else finally caught up with what I’d been up to all year.

Of course, I’ve been less goth since my teens and early 20s, but I still enjoy wearing black and listening to Bauhaus and Skinny Puppy, especially in the fall. While some people associate fall with squash and leaf-peeping—a term that I just learned this year and sounds a little lewd for such a wholesome pastime—I break out my goth/industrial favorites around this time. There’s “Release the Bats” by the Birthday Party, “Bela Lugosi’s Dead” by Bauhaus, “Halloween” by the Misfits (technically punk, but appropriate) and, of course, “Every Day is Halloween” from Ministry.

During my mid- to late-20s, I’d often slipped into a lazy tradition of Josie and the Pussycats, though I spent hours a few years ago sewing timely bed bug costumes. I also dressed up for a few years for my favorite Bikram yoga studio’s annual Hot-a-Ween classes. Since it’s hot yoga, finding a costume that you can sweat and move in for an hour-and-a-half is a challenge, but it’s fun, and people get really creative. In the past, I’ve been Pebbles from The Flintstones (with a leopard-print top and hair bone) and a smartwater bottle, though most people couldn’t tell what I was.

But this Halloween had special meaning to me, since I was bald and no longer confined by my hair. An entirely new look had opened up a host of costume ideas. As, I’d mentioned before, I could be Sinead O’Connor, scolding a host of scantily-clad VMA Miley Cyruses. But I’ve known what I’ve wanted to be since this summer, when I ordered a porkpie hat. I would be Heisenberg, Walter White’s alter-ego on Breaking Bad.

I had my hat, and ordered blue rock candy for my meth and glasses. I bought a green button-up man’s shirt and khaki pants and borrowed my boyfriend’s belt and sunglasses for the full Heisenberg effect. And, of course, I had to buy a beard. I couldn’t find a reddish beard, so I had to settle for a dark one that I cut to mimic Walt’s facial hair.

Like my oyster obsession, though, I’d become a little too focused on the idea of my Halloween costume to the point where I was about to take the fun out of it. We are going to go out and we are going to have fun. I’ve never been into weddings at all and I’m really blasé about most holidays, so I suppose the closest I get to event-freakout moments are around Halloween. At least I get a little scary at the appropriate time of year.

I had a tearful breakdown around the night before Halloween, explaining to my boyfriend why I felt like I was getting a little crazy. I’ve been upbeat about it, but I still lost my hair to chemo. The hair loss really doesn’t bother me very much, and I’ve just been keeping my (bald) head down and marching forward, but sometimes this all catches up to me. I was hell-bent on making the most of my baldness on Halloween.

That day, the main place where I’ve been freelancing was finishing up a big project, and I knew I’d be at their office late. Now, this office is the one place—the only place—I wear my wig. I think most people don’t even notice my hair, since I’m not there very often. Still, I don’t really feel like I should draw attention to myself as the bald cancer lady.

So a lot of the full-time office people dressed up for Halloween, but I didn’t—officially. I was wearing my wig, so I felt disguised. It was weird I was wearing a wig, then taking it off to be in costume.

During lunch break, after purchasing a beard, I decided to get my head re-shaved during lunch break to save on getting-ready time. I popped into the salon closest to the office and approached the woman dressed as a mouse at the front desk. I figured this place would appreciate the Halloween-inspired shave.

Despite the scary nature of the holiday, I didn’t want to alarm anyone by suddenly removing my hair. “I need to get my hair re-shaved,” tugging up a portion of my wig a bit. I got my head shaved, and some nice tingly stuff put on my scalp, donned my wig and returned to work, free of the half-inch of hair that had grown in sporadically.

Since my hair had been coming back a little, I wasn’t sure if I should shave my head for Halloween. But I knew Heisenberg would be a popular Halloween costume, and I knew I had to commit. Would Walter White settle for meth that was only 90 percent pure? No! So I would not be some shoddy Heisenberg. Plus, my hair was growing, but all of it wasn’t growing in yet, and it started to look patchy. (I’m happy to report it’s now all evenly growing in, as is my facial hair—just in time for Movember, though I will probably visit the threading salon.)

At the office, as one thing popped up after the other, I felt my Halloween evening slipping away. When I’d noticed cones going up on the street around lunchtime, I realized that the office was also located along the route of the Halloween parade. If you’ve been stranded on one side of the parade while some of your friends and a party are on the other, it’s no fun; I speak from experience.

So I knew I was racing against the parade clock, as well as my own deadline for getting out of the office in time to go out. By this point, I’d calmed down a little bit and decided that as long as I went out in costume—and took photos, of course—it was going to be OK. I just had to get home and into costume.

I didn’t leave the office until 7:15 or 7:30. I said goodbye to my manager as she walked toward Union Square to catch the train and I walked in the opposite direction to take the F home. Then I realized I was blocked in. I was on the phone with my boyfriend, walking back towards Union Square when I saw my co-worker heading toward me, We realized we were trapped. Sixth Avenue was a loss—even the sidewalks were blocked, so the officer standing guard directed us to another street to walk to the next stop.

I finally got home and changed and walked with my boyfriend, who was dressed as a zombie. And I made sure we took photos, including some with my cats. (As you’ll recall, I’m the sad cat lady who spent an entire evening making Breaking Bad-inspired cat costumes.)

We went to a bar where member of my fitness boot camp were having drinks. I used to work out with them more, but as I’ve been easing back in to working out, I think I should be able to count the hoists of a giant beer mug as reps on Fitocracy for now. (Alas, I’m still not cleared for Bikram yoga, otherwise I would have been tightie-whities Walt for class.) Most people realized I was Walter White, except for someone who thought I was a Hasidic guy, with the hat and beard. I really did look more like a little Jewish man than Heisenberg, especially in a photo my boyfriend took, as we had a late dinner.

I got a few calls from the street! “Hey, Heisenberg!” But perhaps the greatest compliment to my costume was that people thought I was a man. After dinner, we stopped by a place where a friend was putting on a Halloween show and we caught a band dressed as the guys from The Taking of Pelham One Two Three—the 1974 version, not the remake.

As I walked in, I spotted a fellow Heisenberg out of the corner of my eye. I was going to talk to him later, but we didn’t stay long because my zombie companion had to work early the next day. But I overheard my fellow Walter White say to his companions, “That guy did an OK job, with the green shirt.” So from one Heisenberg to another, I consider that high praise.

Me As Famous Bald People

I still need to write about my Halloween as Heisenberg hijinks and my biopsy surgery that took place on Wednesday. But in the meantime, I thought I’d share some photo goofiness. When I first shaved my head, I decided to take some photos of me as famous bald people. I took two of these photos in August, and then when I recently re-shaved my head, I took the other two.

Sinead O’Connor, probably the most famous bald lady of all time. She actually has a bit more hair than this in her “Nothing Compares 2u” video. If I had to dress up for Halloween before my head was shaved, I was thinking about being Sinead O’Connor. I’d wear a black turtleneck and carry around an open letter to Miley Cyrus, and I’d scold scantily clad girls in Miley costumes from the warm comfort of my turtleneck. I may actually go see Sinead O’Connor on Sunday. People will think I’m a superfan!

Sigourney Weaver from Alien 3. I’m pretty sure I’ve seen Alien, although I get it mixed up with that V TV movie. Anyway, this is me as Sigourney Weaver in that film. I didn’t have any dirt to put on my face, and I was just waiting for my boyfriend to get ready so we could go to the Museum of the Moving Image and not fighting a battle against aliens, so I look less rugged.

Kojak, with a lollipop. I didn’t have a fedora, so I just relied on the raincoat, sunglasses and sucker to carry off this Telly Savalas look. I had gone into the bank to get a Dum Dum and had collected several lollipops, but I ate them. I’m eating one of those ginormous all-day suckers here (grasshopper pie-flavored, if you’re wondering.).

Walter White, my summer cancer anti-hero. I started watching Breaking Bad in July and caught up just in time for the premiere of the final six episodes. I was Walter White for Halloween. My boyfriend says I look like a little Jewish man (with the beard, not all the time, because that would be weird). I wished I could have found a more reddish beard. Alas.

Heisenberg, Walter White’s alter-ego. Actually, I was Heisenberg for Halloween, complete with porkpie hat, blue rock candy meth and sunglasses. I plan on writing a whole post on my Halloween, but for now, here are the pics of me as Heisenberg, who is in the empire business.