Memorial Sloan Kettering :: A Pain in the Neck | My experience with Hodgkin's lymphoma (& neuroendocrine tumors)

A Pain in the Neck: Coming Full Circle

It started just below my clavicle on the left side. It was December 14, 2012, and I noticed a strange bump. After being dismissed by my primary care doctor and going to a sports medicine doctor, who became increasingly alarmed as the bump grew over several months and I developed a rash, the sports medicine doc sent me to a specialist who discovered I had Hodgkin’s lymphoma. Bulky tumors spread through my chest and I could barely move my left arm by April. Six months of ABVD chemotherapy didn’t work, so I did two rounds of in-hospital chemo and 10 days of radiation, followed by a monthlong stay at Memorial Sloan-Kettering for an auto stem cell transplant.

Nearly seven years later, I’m probably at the end of my fight with cancer, this time a different type: neuroendocrine tumors. I’ve had a Whipple procedure that removed part of my pancreas, some of my intestines, part of my stomach, my entire gall bladder, and some lymph nodes. I’ve had a liver ablation and several embolizations. I’ve had four rounds of Peptide Receptor Radionuclide Therapy (PRRT), though the last one wasn’t magic like the first three were.

It seems impossible to accept that there’s not much more to do, until I list all of the treatments and surgeries and procedures. When I looked back the other day at all the treatments that the hospital has come up with to extend my life and improve my quality of life, I’ve been taken apart and put back together and been made radioactive and had systems broken down and rebuilt. At some point, all the king’s horses and all the king’s men and even modern medicine won’t be able to put me together again. Even with this list, it’s hard not to feel defeated.

I wanted more time. I still want more time, but only if it’s quality time.

Last Wednesday, I tried an immunotherapy drug called Keytruda that has a 3 percent chance of working for my rare type of cancer. The odds aren’t good, but it’s my last option before hospice.

Am I losing, in the end? Eventually our bodies stop working. Mine has been trying to kill me for an impressive seven years. I probably shouldn’t even be here. I wouldn’t have been here maybe a century ago. The PRRT that bought me the last year wasn’t even FDA-approved until right before I became the first patient at Memorial Sloan-Kettering Cancer Center not in a clinical trial to receive Lutathera. I have the very best doctors at one of the world’s very best facilities, staffed by some of the very best people at the top of their fields. I’ve been extremely lucky in that sense. They’ve worked tirelessly not only to keep me going, but to help whenever they can regarding quality of life.

In seven years, I fell in love more with New York City. I lost three beloved cats and gained three more. I got a new job. I went to concerts, museums, performances. I traveled to Scotland, Spain, Cuba, Bermuda, California, Barbados, France, Ireland, Iceland, Sweden, Denmark, Tennessee, Vermont, New Hampshire, and so many other places. Milestones happened: birthdays, anniversaries, weddings. People I love made new people and I got to meet them.

There were also upheavals, heartbreaks, betrayals, lay-offs, deaths, illnesses, losses, and the usual hardships. But I can’t imagine missing any of the last seven years.

I mean, a Cleveland sports team even won a championship.

I met and gotten to know a lot of people in the past seven years too, and I can’t imagine having left without meeting them. I even dated, something I’d never thought I’d do (or have to do), and I fell in love. On Tinder.

So if this is the end, I didn’t lose. I feel like the doctors bought me time. I feel like I robbed a bank and have been on the lam and the authorities are closing in, and my time of getting away with it has come to an end. I’m full of sad resignation and defiance. (Actually, that sounds like the finale of one of my favorite TV shows.)

I’m waiting for the side effects of the Keytruda. I’m told they are minimal. I keep waiting. Do I feel different? I think I’m maybe getting a slight rash. I do feel a little different but I couldn’t tell you how exactly. For the most part, I pretty much feel the same. I get a little tired. It’s hard for me to climb stairs.

My lymph nodes hurt. They hurt increasingly over the summer, as the neuroendocrine tumors spread through my lymph system. I feel kind of sore, especially in my chest, near my clavicle. This time it’s on the right side. My neck feels sore.

And so now near the end, here I am, with a pain in the neck.

The irony isn’t lost on me.

Mediport, PRRT?

On Monday, I had a Mediport put in. I was supposed to get one about four years ago, when I was doing Brentuximab after the ABVD chemo didn’t get rid of all the Hodgkin’s lymphoma, but I thought I’d have only a few more months of chemo at the time. Now that it looks as if I’m going to be getting chemo and intravenous fluids indefinitely, I need something a little more permanent than a PICC line. This should make things easier. My veins are pretty beat up. Whenever I need an IV these days, it ends up being a small needle in my hand.

The port placement was an outpatient procedure, and I rested the remainder of the day. Since they didn’t really think about how I use my PICC line every day for fluids, they left the PICC line in too. I’ll probably get that out next week, when I go in for chemo. I’ll need to learn how to do an IV through my port.

No lifting more than 10 pounds for five days. After that, I am supposed to be able to resume normal activities, though I can’t play contact sports probably ever again. Since the last time I played contact sports of any time were miserable days of gym class in 9th grade, I can probably live with this. I do miss working out, but with my energy levels and sickness, that might be a long way off, if ever.

It’s been a disappointing several weeks, with the tumor-related side effects coming back with a vengeance after my first chemo treatment. I’m now giving myself three shots of short-acting octreotide (Sandostatin) every day, in addition to the long-acting shots that I get every month. After some desperate Googling, I had hoped one drug might work for the side effects, but it turns out that my tumors make VIPoma, not seratonin of carcinoid syndrome, so that treatment wouldn’t work. VIPoma is rare, and happens in 1 in 10 million cases per year.

I read that and bought a lottery ticket. I didn’t win.

The tincture of opium isn’t approved by my health insurance, but I’m not sure that it would help anyway. No one has officially said this, but it seems like the options are running out. The octreotide was the first step, and the doctors really thought the radiation would work. Now that the chemo isn’t working, I think things are looking grim. It’s a rare cancer without a lot of treatment options—and I’ve already done the surgery, ablation and radiation. Though the only tumors showing up on the scan are in the pancreas, they are inoperable, but the thought is that there is microscopic disease that is also producing VIPoma, which is making me so sick.

My last hope is PRRT (Peptide Receptor Radionuclide Therapy), which goes by Lutathera and was just approved by the FDA in January. Radiopeptides are delivered to the NET cells, which are hopefully killed and shrink the tumors. Both Mount Sinai and Memorial Sloan-Kettering are supposed to have this treatment available in April. I’m hoping my health insurance covers this, because it would be only four treatments as opposed to the Dacarbazine, which I would get every three months forever. Also, I think the Dacarbazine is what is worsening my symptoms, and this reminds me of last year, when the chemo would make me sick for a week and ultimately did nothing to stop the growth of the tumors. From what I’ve read, Lutathera could stop or shrink the tumors and buy me a few more years, but mainly I’m concerned about quality of life. I’m a little concerned since the octreotide hasn’t worked very well, that the Lutathera won’t work.

If the Lutathera doesn’t work, then…well, I think that’s it. The effects of the VIPoma haven’t been able to be controlled. I still do daily IV fluids for three to four hours and take a lot of supplements and give myself those three shots a day, but eventually, the dehydration and electrolyte imbalance take a toll on your heart. Sometimes you more or less starve to death or your liver fails or you might have some kind of attack.

I’m OK with letting go. I’m tired of the IVs and the procedures and the shots and wearing diapers and the feeling that something is always hurting all the time. As Leonard Cohen said, “I am ready to die. I hope it’s not too uncomfortable.” I’m aware it’s only been five years, and people live through many more challenges than this. Maybe I’m just tired.

Even though it was tough, I find myself looking back fondly on my recoveries after the stem cell transplant and after the Whipple procedure and after last year’s liver ablation. I think it’s because I had hope. I wonder if I’ll look back at this time with nostalgia, as a time when I hoped that this one thing would buy me some more quality time.

Bills: The Real Pain

Right now, the healing incision in my belly and the adjustments of my newly rearranged organs give me pain, but nothing really ever compares to the pain of hospital bills, does it? Go ahead and tell me that you’re going to shoot so much poison into my veins that you will have to harvest my stem cells to rebuild my immune system. Make me lie down for long periods of time while you radiate my organs and burn my esophagus so much that I cough pieces of it up weeks later. Slice me open and remove organs and organ pieces and reroute my digestive system so that I’ll end up spending hours in gaseous pain with sore abs. I can handle that, even when I have moments when I am sure I can’t anymore.

Show me a hospital bill or an explanation of benefits, though, and my eyes glaze over and I fall apart. I’d rather deal with gauze than red tape. I will try to put on a brave face while nurses try to find a vein in my beat-up arms, but when it comes to the bills, I want to cry and scream that I just don’t want to. A phone call with hospital billing or insurance lasting more than a few minutes throws me into Kafka-esque pits of existential despair. When the bills arrive, just looking at them makes me want to eschew modern society, but then I remember that I am a product of the modern age and would do terribly in any other period of time. I know I need to stop being such a baby and learn how to deal with this stuff.

Still, figuring out medical bills and health insurance is hard for everyone—even for people smarter than me. Some people who even deal with this kind of thing for a living come across snags in the system. I once heard a story from an insurance/HR person who had an MRI done at a hospital that was covered by her insurance, but—surprise!—a doctor not covered by her insurance showed up at some point and ended up on her bill. Eventually, she had it taken off her bill, but the health care system is often a huge pain.

My billing experiences with Sloan-Kettering have been pretty straightforward (knock on wood) and last time, my insurance company was pretty good about working with them. I hope that’s the case this time. It’s one of the reasons I opted for MSKCC over NYU Langone for my Whipple procedure. I feel constantly confused by NYU Langone’s billing system, and after some conversations today, it seems as if they, too, are confused by their billing system. It comforts me to know that I am not alone, but it alarms me that the very people sending me bills are also confused.

Yesterday, I got an automated call letting me know that I had to pay $275 to NYU Langone or it would go to collections. I was given the option of paying right away, but I didn’t have a credit card handy and I wanted to look into it. I wrote down the amount and then called back today to try to pay it. I called the number to pay a bill, but then the person said it couldn’t be handled at that number because it wasn’t a hospital bill, but a doctor bill, and apparently those are handled separately because that’s not confusing at all.

I was transferred and I asked about the $275 bill, and they said I had a $500 bill and $50 past due bill (the one, I think, that pretty quickly went to collections and that I just sent a check out for). But what about the $275? No one seems to know anything about that amount. She transferred me to another number and told me to press option #2, which I did, and then I ended up with her again. She apologized and said there must be a high volume of calls and told me they would call me back.

In the meantime, I tweeted to NYU Langone and got a reply to call Patient Relations. I called Patient Relations, but they said they weren’t the people to talk to. The woman there was nice and tried to be helpful, but in the end, I don’t feel as if much was accomplished. She was going to suggest someone in a financial department, but they handle only inpatient bills (it seems as if there are a lot of divisions when it comes to bills). She said there’s a $200 balance (separate from the $500 and the $50, I guess) that won’t go to collections for another three months, but I am free to call and pay that now.

I still don’t know where the $275 or the automated call came from. It’s possible, she said, that the call came from billing. But why such an arbitrary amount? I feel like a frightened retiree they’re trying to swindle. They are one step away from calling and telling me I’ve won a free cruise. In the end, I spent about a total of 25 minutes on the phone today and got no real answer, paid no bills, and am still unsure about what happened.

In the meantime, I think I’ll ignore NYU’s confusing bills, though I have a nagging suspicion that one of them is going to collections somewhere. Hopefully by then, I’ll be on an island somewhere enjoying my free cruise after I hand over my Social Security number.

Update: After an all-day back-and-forth, I finally spoke to someone, paid part of the bill and got on a six-month payment plan. There’s no record of the mysterious automated call that I got, which is weird.

Home Again

So I’m home! I checked in to Memorial Sloan-Kettering Cancer Center on April 13, and I checked out on May 12 around 2 pm. After a month of radiation, chemo and the auto stem cell transplant, I hope to be cancer-free when my next PET scan rolls around in August.

I can’t express enough gratitude to my family and friends for all the support the past month. Thank you for the gifts, cards and the words of support. They truly sustained me during my time in the hospital, whether it was a gossip magazine to read while I was climbing the walls or Easter candy when I could still eat or an email telling me to hang in there.

I’d also like to thank the staff of MSKCC for taking good care of me and being unfailingly nice and understanding during an extremely difficult time. This includes the doctors, nurses, food staff and cleaning crew, who all made me feel as if I was in good hands and listened to. I do miss my afternoon tea service and bedside yoga. I never want to go back, for obvious reasons, but it’s as good a hospital experience as you can hope for. Also thank you to the nurses who had to re-introduce themselves to me after taking care of me during my post-transplant morphine haze. Even if I can’t remember much, the care given to me during that time doesn’t go unappreciated.

Here’s a long update, broken down into subcategories. Now that I’m recovering, I don’t expect to abandon my blog, especially since I still haven’t returned to work.

Panic disorder scare and Ambien. By Monday, I’d regained my sanity, but had been having trouble sleeping my last few nights in the hospital.

In fact, I took Ambien for the first time three nights ago, as well as some Ativan to quell some panic feelings. As someone who used to have panic disorder, I felt the sleepytime panic jitters. I’ve been through a lot this past month. I keep forgetting that all the drugs, from the Ativan to the morphine, might have me feeling a little off. I was especially worried that my panic disorder would return, but thankfully, I was just afflicted that night.

A word to those who want to tell me to just calm down or not worry: Thanks for your well-meaning advice but that’s not what panic disorder is. Asking me to will my panic symptoms away is kind of like asking me to will my cancer away. If I would, I could, but panic disorder and panic attacks are physical conditions.

Sometimes, people say they’re having a panic attack, but they are just freaking out. A real panic attack feels like you’re dying and losing your mind at the same time. I wouldn’t wish it on my worst enemy. Not even my celebrity nemesis, Prince. (It’s a long story, but in my version, I emerge victorious over him, of course.)

Panic attacks are basically your body’s fight or flight response. The problem is that it happens with no obvious trigger. One moment, you’re waiting to get your tire changed, the next moment, your heart is racing, your extremities are numb, you’re sweating, and you feel like your brain is trying to leave your body in a weird, dissociative feeling. It’s a natural thing that happens at the wrong time.

The worst part of panic attacks, though, is that no one understands them and thinks you can somehow calm yourself out of them. People understand cancer, but when you have panic disorder, you often get a lot of side-eye. Or well-meaning, but misguided advice to just get over it.

Anyway, I always go out of my way to try to explain panic disorder—when you keep getting panic attacks over and over again—to people. Granted, some of it is mental. With panic disorder, you worry so much about having another attack, you create triggers for yourself and end up having attacks. People with panic disorder often become agoraphobic, because they’re afraid to go out and have panic attacks, or alcoholics, if they try to self-medicate.

I was dangerously close to the latter, before some cognitive behavioral therapy and medication. I finally got through my panic disorder, but it’s not something I want to revisit.

I’ve been avoiding taking Ativan, because of my old panic issues, although it helped during the stem cell transplant. It’s also offered to quell nausea, but I’d usually opt for the alternative. Also, knock on wood, I rarely have nausea. The weight loss I’ve experienced is from indigestion and general esophagus trauma from the radiation.

Yet three nights ago, I found myself taking Ativan and Ambien. The latter also makes me nervous. “What if I drive?” I asked the nurse who came in to administer the Ambien.

“Well, you’re in here, so you can’t do much,” she pointed out. I would have to disconnect myself from my medication pole somehow and then steal a car to drive out of the hospital. Still, I worried I’d go crazy and rip out my IV or just generally be a weirdo. Since the staff had seen me having morphine conversations with myself, though, there’s not much more I could to in the weird department.

People do some strange stuff on Ambien, though, from cooking meals to shopping. One of my favorite writers, Laurie Notaro, dreamed up a fart chart that she included in her latest book. I don’t have that kind of comedic genius in my subconscious. Ambien made me think about sleep, really think about it. Like I wondered where my servants would also sleep. (I suspect my subconscious Ambien self is a Gwyneth Paltrow type.)

What if I tried to start an uprising and liberate my fellow patients? That seems like something I’d try to do. The nurse added that it’s the lowest dose of Ambien they give out.

I finally, blissfully, fell asleep and to my knowledge, didn’t exhibit any weird behavior. I took it for the few following nights, but I think I was stir-crazy. By the last night, I reversed my bed so my head was at the bottom and my feet were at the top, and I slept about three hours. I was also Christmas-morning eager to go home, so that factored in.

I slept Ambien-free last night, in my own bed, with my squishy pillow. I hope to get back to normal sleeping once my throat heals.

I had my line pulled. What does this mean? No more leukapheresis catheter! I’m line-free. Not attached to anything. I don’t have tubes poking out of my chest.

What I did have, however, was a major case of the heebie-jeebies. If you’re squeamish, skip ahead. To take out your line, they just snip the stitches and yank it out. That doesn’t seem right, but there you go. Yesterday, I had breakfast and then a shower and went straight to IR to have my line removed. I was going to break my Ativan rule and ask for it, as long as it was being offered, and my squeamish self was going to have a tube yanked from my chest. But I didn’t have time. They assured me it would be quick.

Luckily, I didn’t have to stew in my own squeamishness long before the doctor arrived. He matter-of-factly informed me about the snipping and pulling. I refrained from asking him an inane question, like, Are you sure this is the best way? I did ask, however, “Will this be gross?” He said no and was mostly right.

Since my line had been in for almost two months, he was concerned it wouldn’t want to come out. This concerned me too. He snipped and tugged. It didn’t want to come out.

He then gave me some lidocaine shots (ouch, a little), and then did some snipping with scissors. Finally, it came out, and I am free. I am still squeamish about the whole thing, though. I won’t be entering the medical profession anytime soon.

Release. Hi again, fellow squeamish people. After my line was pulled, I had some instructions to listen to and some medications to go over. At 2 pm, I was released. Finally.

I can eat only ice cream. Well, mostly ice cream. There are worse fates, I suppose. To get released, I had to show I can eat 1,000 calories and drink at least 1.5 liters of water. It’s frustrating, because I usually can eat like a champ, and I drink water all day long.

The issue is my throat pain, still from the radiation. It’s difficult to swallow, and therefore, eat. I also still have somewhat painful burps, so eating hurts twice.

I’ve been having a lot of smoothies—specifically a hospital pediatric concoction called the Cranky Monkey (banana, coconut milk, yogurt and chocolate ice cream). It still takes me forever—well, hours, to drink one. Plain ice cream is the easiest thing to eat—nice and cold and melty. Mostly, I’m eating soft foods—mashed potatoes, milkshakes, yogurt, etc. Tonight, my boyfriend’s made me polenta. I am spoiled.

Yesterday, before I left the hospital, I couldn’t resist the lunch special, sesame chicken. I ordered a half-order and barely made a dent in it, but it was delicious. And it was nice to chew again. Once I can eat, I’ll be sure to pack on this lost weight. I’m hungry.

Also, as someone who didn’t and couldn’t eat, for several weeks, if you tell me you’re on a diet cleanse, I’m going to punch you square in the mouth and then you’ll see what not eating feels like. I’ve tried to be understanding about cleanses, even when I was a nutrition editor, but here are the facts: Your body doesn’t need a “break” from digesting. Right now, I’m recovering from my “break.” If you believe you are full of toxins, you are full of something, but not eating isn’t going to solve your problem. I’m not staying quiet about my cleanse feelings anymore. If you can eat something, then do.

“Probation.” Now that I want time to pass quickly, I have all the time in the world. I miss feeling like I don’t have enough hours in the day. I am eager to get back to work.

A fellow transplant patient whom I virtually “met” through the blog, said that while hospital was like jail, the next three to six months are like probation. I have to agree. The list of restrictions are long. Here are a few restrictions, as several of you have asked.

1. No crowds. I have to avoid crowds in a city of 8 million people. It can be done, but it’s tricky. This means no concerts, no movies at peak times, etc.

2. No germs. No sick people. I also can’t get vaccinated for MMR (measles, mumps, rubella) for a year.

3. No gardening. I just found this out yesterday. I am going to have my boyfriend do the garden dirty work this year, while I supervise. Looks like I’m planting mainly perennials this year. Actually, this might be the year I do the Orange Flower Experiment. Orange plants thrive in my garden, from nasturtiums to mums. I might just plant orange and green things this year and call it a season.

4. No fresh vegetables. I miss salads. But I have to be wary of germs, so I’m not allowed fresh vegetables or fruits, aside from thick-skinned oranges and bananas. And, of course, no sushi, oysters or anything that’s not thoroughly cooked. And no restaurants or take-out, at least for awhile. I’m lucky my boyfriend is a good cook.

5. No drinking. I can’t imagine ever wanting to drink again with the way my stomach is. But the time will come, just not at least for three months. That’s OK with me for now. Talk to me in two months. Some of my friends got me a cool bar map of NYC, so once I am back to my old form, I intend to use it wisely.

Still, probation is better than jail. So now, I wait. My counts are coming back up, but it’s going to take some time…and more patience.

Here is a photo of my cat genuinely confused by a card that looks like a hot dog. He even gave the card a few preliminary licks before giving up.

Hospital Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cats.

Even more cats!

More cats.

Candy.

Back at the Hospital

Yesterday, I felt great. I woke up early, got a bunch of stuff done and felt ready to conquer the world, albeit from my bed. I even did yoga for a few days this week. In the afternoon, I felt a little sleepy, so I took a nap. Then I took another nap. By the time I woke up at 6, I had the chills and felt a little achey.

I took my temperature and it was 100, then 101, so I called the doctor. I had hoped he would just tell me to take more of the antibiotics I had on hand, but the doctor wanted me to come in to urgent care with the possibility of being admitted to the hospital since my white blood cell count is low and I’m at high risk for infection. So I packed up my bags and we headed to the hospital, about a week and a half sooner than I wanted to return.

My white blood cell count was 1 on Monday and now it’s hovering around 0, meaning I am neutropenic and have no immune system to speak of. It’s what they had expected after the augmented ICE, and the shot I was given on Friday hasn’t kicked my white blood cell count back up for some reason.

The good news is that they didn’t detect any virus activity, though I’ve been sniffly the past few days. After waiting in Urgent Care, I finally got an X-ray and got to my room around 1:30 am. I tried to keep in mind it’s always better to wait in Urgent Care than being rushed in as an emergency. My boyfriend offered to stay, but sleeping on an uncomfortable pull-out chair among all-night beeping machines is no way to get proper rest. I sent him home.

This morning, I got the verdict: I probably won’t go home until Sunday, or at least until my blood counts are back up. They don’t want to send me home just to have me return. This is a pretty common thing after augmented ICE chemotherapy, so I just have to bide my time until I can return home. Although I’ll be turning around and coming back here next Friday if everything goes as planned for my second round of augmented ICE.

The hospital is full of surprises. When I took a shower, I came back to find my bed made. It was nice, like going to the bathroom at a restaurant and finding your napkin folded upon your return. Later on, the nurse came in with a Lovenox blood thinner shot and I remembered that it stings a little bit, so that was a less fun surprise.

I like this room better — the bathroom is probably one square foot bigger and it makes all the difference. Also, I’m at a slightly different angle than before — the A side of the room versus the B side, so I have a nice view of the Queensboro bridge. But as I told a friend who stopped by earlier, I think I’m on a less fun floor. My last floor when I was here for the ICE had an activity center with movies, crafts and live entertainment. This floor is quieter, and I don’t think they’re as enthused to have me walk around, since I’m at risk for catching everything. That’s OK — I like my quieter bit of real estate.

The good news is that I will have the opportunity to try the Maryland crabcake and the Nutella and banana crepes during my stay. There’s also a make-your-own sandwich option, and I was going to try to get three fillings and four cheeses on one sandwich or see if the kitchen would make a giant Dagwood, but now I can space out my sandwiches.

I’m on a low microbial diet to avoid any potential pathogens, because of my suppressed immune system. It’s pretty much what I’ve been following while eating outside of my home during chemo: No deli meats or cold cuts, no raw fish and no raw fruits and vegetables (except for self-contained bananas and oranges).

I’m also not supposed to have mold-ripened cheeses, and while I haven’t had any raw cheeses for months, I think I’ve been living dangerously and eating Brie, goat and blue cheese. (Oops.) I’m also apparently not supposed to have frozen yogurt, but it’s not the ’90s, so I should be OK. (People keep telling me that frozen yogurt is making a comeback but I don’t believe it.)

For now, I bide my time and hope for an uneventful stay. I still feel a little sniffly. The internet connection here has been a little spotty, and this prevented me from taking an important Zimbio quiz on which ’90s boyfriend I would have. I will do my best to make it to Sunday in such conditions.

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.