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.

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.

Finding Strength

As I may have mentioned, I am beyond antsy at this point. The latest is that I’ll be here through the weekend. Maybe I’ll be released on Sunday at the earliest, but it’s not likely.

Much thanks to those who have agreed to visit and to try to keep me sane, as I climb the walls.

Today, I may venture to the patient lounge on the 15th floor just to get out of my room and see what’s happening. Last night, someone knocked on my door and offered a guitarist to serenade me. It’s a cool idea, but I’m weird about musicians/performers being able to see me, so I deferred to another time.

Thanks, too, to all of those who have offered me words of strength—and encouraging words about my own strength.

The thing is, I never wanted to be strong. Often, I worried I was weak. I hoped I would stay that way, untested by life.

When I looked at my somewhat charmed life, I feared I skipped a step. Had I done something to deserve these amazing friends? This life, rich in experiences? A career I loved? The love of my life? Did I need to suffer first? Work harder?

I sometimes worried that I hadn’t earned what I had. Now I know that’s not true. I worked for what I had and I definitely deserve the company of the great people I’ve surrounded myself with.

I didn’t need cancer to see that. I didn’t need cancer to make me stronger, though it has. Sometimes, something terrible happens, and we don’t know why. This was one of those things. I hope to be on the other side soon.

Waiting

I’ve reached the end of my patience, just when I need it the most. I’ve been here 27 days.

It’s no fault of the hospital, but I’m just ready to go. I felt patient and Zen as a Buddha when the doctors told me I’d be going home soon on Monday and Tuesday.

Today, I’m ready to climb the walls. Or, more specifically, the wall that I seem to have hit. I’m tired. I feel well enough to be bored, but lack the energy to do most things. TV bores me, while reading requires a little too much mental energy. I yawn frequently, but it hurts my throat. I look like I’m crying, because my eyes water so much from being tired. I can’t believe how exhausted I am without the morphine.

Sometimes I do cry, because I’m just tired of being sick. Everything smells hospital-tinged. Then I feel a pang of guilt for those who have been here longer, for those who suffer. For those who check in and never check out.

I estimate I will be here another five to seven days. It’s not an eternity, even in hospital time.

On Blogging

My invitation from The Big C and Me to join the World Blogging Tour last week got me thinking about why I write these blogs. At first, it was a way to process what was happening with my Hodgkin’s lymphoma, and later, once I decided to share that I had cancer in September 2013, it was a way to keep people posted on what was going on. But I’ve also wanted it to be a place where those going through ABVD chemotherapy or a stem cell transplant could read about my experience so they had an idea of what to expect.

I found a few blogs about Hodgkin’s lymphoma and refractory Hodgkin’s lymphoma to be helpful, so I wanted to put my own info out there, although each patient has his or her own experience. Some people can eat all the way through the transplant, some have throat pain (like me), and others have nausea. Some people experience very few side effects, while other people have many. Many people go into remission after ABVD, while some refractory or relapsed cases need additional trials, chemo and radiation.

I never wanted to become a cancer blogger, because I never wanted cancer. Once I started writing, though, it became extremely therapeutic. When I talk about pain or side effects, I hope it doesn’t come across as self-indulgent or woe-is-me. It’s just to let people know what happened and what they might expect. I’m not one to pore over every blog out there either, because at some point, I’d freak myself out.

I suppose my message is: If I can to this, so can you. I have a low tolerance for pain. I’m squeamish. I don’t like doing things I don’t want to do.

My experience, overall, has been a good one, despite the disappointments of having refractory Hodgkin’s lymphoma and the year-plus of treatments.

Here’s a little update on what’s going on with me, more than a week after my transplant.

My eyelashes are gone. They just disappeared one day. In high school, this guy I knew plucked out all his eyelashes one day because he was bored, he told me, as we stood in line for gym attendance. His eventually grew back. I have a few left, and they keep depositing themselves into my eyes.

My eyebrows also are mostly gone. I feel as if I spend more time, money and thought grooming my brows than my hair (back when I had hair). It’s almost a relief. Fine, take a break, brows. You’ve earned it. Come back when you’re rested, and we will resume our struggle with how much real estate on my face you’re allowed. Spoiler alert: Not as much as you seem to think. (I still have a few mustache hairs in place, though. Those can go away forever if they’d like.)

I am nearly sipping. I took about seven sips of tea last night, and it felt momentous until I looked at my nearly full cup. Oh, well. Small steps. The doctors seemed impressed after looking into my mouth, which has been healing, but they also don’t want me to force myself to eat or drink. Taking a few tiny pills today really hurt. Today, more tea; tomorrow, broth.

My throat's enemy: The tiny pill.

My throat’s enemy: The tiny pill.

I had a bit more tea today, but I forgot that I need to focus all my attention on swallowing liquids while my esophagus heals. Otherwise, disaster ensues. Luckily, I didn’t choke too much on my tea.

I’m starting to get hungry again. They really go all out here to try to tempt you to eat, so it’s no fault of the menu. I have in my possession the regular menu, the weekly specials, the children’s menu (with a Thanksgiving Day sandwich) and a purée menu (where everything is puréed, even the lasagna that I plan on ordering when I am well enough). I just need to get rid of this pain.

I am awake for hours at a time. I still nod off a lot—while I’m typing an email or getting my vitals taken. But I can stay awake for awhile without napping again. But on that note … I can tell I’m falling asleep now if I close my eyes for more than a second or two.

Day Zero

Tomorrow is Day Zero, as it’s listed on my treatment calendar. In the late morning, I will receive the six million stem cells that were collected a few months ago. I’ve heard doctors and nurses refer to it as a re-birthday.

While tomorrow is the big day, it’s probably going to be relatively anti-climactic. They’ll do the stem cell re-infusion in my room, through my catheter ports, in a series of four injections. Mostly, I’m told, it’s going to be smelly for a day or two, because of the preservatives used for the stem cells.

Beforehand, I’ll get some Benadryl, sure to make me sleepy, as well as Ativan, which they say is for nausea. I was on Ativan briefly when I suffered from panic disorder years ago, and while the drug itself is an anti-anxiety medication, the thought of taking Ativan has always made me irrationally nervous.

The stem cell transplant process really already began a while ago, when I started the radiation treatment. Today, I finish up my last bag of chemotherapy at around 5 pm, and the autologous stem cell infusion, slated for around 11 am, is the very last part of this treatment. (So, right now, almost two steps down and one to go.)

After that, it’s all recovery. People have asked me why they’re giving me these stem cells that they harvested a few months ago. The chemo regimen that I’m on is about four times stronger than the previous high-dose ICE treatments I received, so it damages your bone marrow. (The radiation also has its depleting side effects as well.) My red blood cells will be low, so I’ll experience fatigue, while my low white blood cells will put me at higher risk for infection. Low platelets make you prone to bleeding.

So the stem cells are to give your body a boost towards recovery. In the meantime, however, there’s that dip when everything is low and the side effects are at their maximum for about seven to 10 days—hence the fatigue, nausea, mouth sores, fever and other things expected during this coming week.

I’ve heard multiple times, though, that once your counts come back up, you immediately turn a corner and start to feel better, like a switch going off.

Right now, I’m just starting to feel the side effects and find myself edging on optimum crankiness. It’s that point where you don’t feel well, but still have the energy to potentially be a big jerk if you wanted to be. Overall, I’m going to try to lay low today and slip into my hermit mode.

My throat is dry, and my first mouth sores are appearing. When I eat, my digestive tract is rocked by violent burping that sometimes develops into hiccups.

Tomorrow marks the last step on a fresh start that will hopefully close a year of treatment for my Hodgkin’s lymphoma. I’m only cautiously optimistic, however. While this is supposed to be “the best type of cancer,” with mostly a positive prognosis, having refractory Hodgkin’s lymphoma essentially puts you in the unluckiest of the lucky category. I see and hear stories of people battling Hodgkin’s lymphoma for two, three, eight years out, and it scares me, especially since I have that mysterious spot that still lit up on my last PET scan.

One doctor seems to think it’s Hodgkin’s lymphoma spread to the pancreas, while another doctor doesn’t seem to think that’s possible. All doctors seem confident that this radiation and chemo combo is the best thing for me, so it seems pointless for me to worry. As that old saying goes, worrying is like praying for something you don’t want to happen.

And yet…I worry. As the social worker last week sat down to talk to me and get to the root of my mental well-being, we talked about my fears about this transplant. My biggest fear is that I won’t get better. It’s not death that I fear. (It’s unlikely, but I’ve thought about it, and it doesn’t bother me as much as everything that might happen before it.) It’s the thought that this cancer just won’t go away.

I’m tired of not living life on my terms anymore. This makes me feel like a petulant child to say this—for who does really do whatever he or she wants? But I’m tired of having an asterisk on the end of everything that I do. (*If I can travel by then. *But I can’t be in the sun. *When I can possibly work full-time.) And I’m terrified of taking life back up again, just to have the lymphoma come back and reclaim its hold.

I especially feel terrible, because I see so many brave and inspiring people fighting this disease and other forms of cancer. I feel like I don’t have the strength sometimes.

Right now, I’m just going to tap into the reserves and prepare myself for the upcoming brutal week. I don’t need to worry about my scan months from now—I just need to focus on the closest horizon. I’ll find the strength I need when I need it.

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.

Even more cats.

Cats.

cats

Even more cats!

 

 

More cats.

More cats.

Candy.

Candy.

Lurking Deadlines

Today I wondered what it will be like when I don’t feel as if I’m up against absolute deadlines. These deadlines are, for the most part, self-imposed.

As I had one of my last dinners out—for the next four months, at least—with a friend last week, I realized I have had a “last night out” series of events, beginning a year ago, before the ABVD chemotherapy.

Since then I’ve had a string of last hurrahs—before Brentuximab in November, and then before my ICE treatments, when I worried that I wasn’t having as much fun as possible. Friends have gamely attended this series of lasts, right through last week’s meals out, even though I’m like that friend who keeps having going-away parties but never seems to move.

I feel as if I’ve been scrambling to wrap up freelance work projects for a long time—before the first round of ICE, the second round of ICE, before radiation and this hospital stay for the stem cell transplant. Though I have nothing pressing to do, I’m still trying to finish up a few things before the mind fog of chemo descends upon me this weekend.

And then I realized I also wouldn’t be able to update my blog, which I’ve been ignoring—so here I am. How could I feel busy when I’m technically supposed to be doing nothing?

Another deadline arrived this morning. Today is my first and last day to walk the halls. I was told on Monday that I had to stay in my room because of my neutrophil count, but today, the nurse and nurse practitioner agreed that I could take some laps around the floor.

By next Wednesday, I should be feeling temporarily terrible if everything’s on schedule. Though I’m not looking forward to it, it’s a relief. If I’m lucky, this will be one of the last hurdles to jump.

I finished one week of outpatient radiation and now I’m in the middle of my second week, which is Total Lymphoid Irradiation (TLI). On Saturday, I begin four to five days of chemotherapy, followed by a stem cell transplant. Then I feel terrible for seven to 10 days before I start to feel better.

Right now I’m waiting for my side effects to start. Truthfully, I’m hoping my nausea holds off at least through today, so I can enjoy the breakfast pizza and Mexican bean soup specials and dig in to some Easter candy a friend brought by yesterday.

So I see this weekend and next week as another deadline. I think I’m a little less tightly wound than I was before ICE.

These deadlines don’t loom so much as lurk, since I’m not sure exactly when I’ll start feeling nauseated or fatigued.

I realize all these “lasts,” are extremely temporary in the grand scheme of things. There are also post-transplant firsts on the horizon—and the accompanying celebrations—first walks around the neighborhood, first outings with friends, first dinners out, first workouts. There are more joyful firsts, I hope, just around the corner.

A Love Letter to Working Out

I’ve started this post at least half a dozen times since I started my blog. It seems odd to be writing my love letter to working out when the most strenuous thing I’m up for is walking. My left arm is still a little immobile from phlebitis. I have a leukapheresis catheter in my chest that I have to be careful with, and I have a blood clot in my lung that leaves me winded after a flight of stairs. My hemoglobin is low, so I’m often and easily tired. I haven’t been able to work out for nearly a month, since before I went in for the last round of high-dose chemo.

Yet I still feel strong. Throughout the treatment—and now, more than ever—I’ve been drawing on what I’ve learned from my workouts and my yoga practice.

Physically, I did get some compliments on my blood pressure, at the beginning of treatment. Years of trying to perfect the savasana “dead body pose” in yoga helped when I had to stay perfectly still for scans and my radiation mold measurements. I will have to stay in good cardiovascular shape, especially as all this chemo and radiation takes a toll on the heart and the lungs.

But I think I can say that without yoga and fitness classes, it would have been a lot harder to get through all of this mentally. While I thought I was building muscle and flexibility, I was actually becoming stronger in ways I didn’t realize.

In December 2013, when I noticed a small bump that turned out to be two dislocated ribs, I was irritated that I’d have to modify my fitness routine for a month or two. That, of course, has turned out to be more than a year, since those ribs were dislocated by Hodgkin’s lymphoma tumors. I’ve had to take time off from working out, adjust my routines and generally change everything.

In between treatments, when I receive the OK to work out, I do what I can. Sometimes I wonder if it’s worth it, but when I think about how working out has helped me overall, I know that it is. The muscle tone will come and—in the next few months especially—go. But the benefits go way beyond that.

Change is often difficult, but it’s possible. This was probably the first thing I ever learned. I’ve said this before, but I’m not naturally a physically active person. I was a chubby kid and always the last person picked in gym class. Very last—after the kids with asthma and injuries.

It wasn’t just that I wasn’t fit—I’m also extremely indifferent to any kind of sporting competition. That won’t change. I will spend 10 minutes agonizing over a Scrabble word, but I lose interest in winning any kind of sport immediately. You want the ball? Have it. The promise of being left alone is enough for me to surrender. The opening scene to the old MTV cartoon Daria, where she refuses to hit the volleyball and her teammates eventually collide to cover for her—that is pretty much the animated version of me in gym class.

Yet I started working out on my own in high school, first with Cher’s A New Attitude step-aerobics video. (Her outfits are pretty fantastic.) I discovered I kind of liked working out, and eventually found other things I enjoyed—yoga and fitness classes. I’ve tried to make working out part of my everyday routine. Even though I skip a few days, intending to work out every day helped me to at least do it about five days a week.

I’ve also never been a morning person, but managed to become someone who regularly woke up at 5:15 or 6 am to go to yoga or boot camp class. I found I enjoyed this thing called morning, which I’d avoided for years. Also, it was helpful to roll getting out of bed and working out—two things I tend to put off—into one fell swoop of determination. So the night owl and the last person picked in gym eventually learned to be the early bird at class.

The hardest part is what makes you stronger. Those last few seconds in standing bow or being in a plank sometimes seem impossible. That’s when the instructor usually says something encouraging like, “These last few seconds are where the change happens!” Or: “This is the hard part, but here’s where you’re building strength.”

I’ve thought about these words a lot as I near the hardest part of my treatment. A few months of dislocated ribs turned into six months of chemo, which turned into more than a year of chemo and another three to six months of recovery. The most difficult part still lies ahead. Heading to yet another appointment or sticking on an AquaGuard over my chest catheter before showering, I’ve cried and declared, “I don’t want to do this anymore,” and sometimes, “I can’t do this anymore.” I’ve been sliced open and poked and poisoned for a year now, and I’m tired.

But I don’t have a choice. I’ve learned that just when you think you can’t do something anymore, that’s when you need to power through. It’s time to cue “Eye of the Tiger” and do this. The hospital bedside yoga and laps around the floor, dragging my chemo pole with me, will be my one-armed Rocky pushups. Right after the stem cell transplant, I’ll be physically weak and in a bit of a mental fog, but overall, tougher.

Patience. At this point, after a year of treatment, I’m impatient to get this over with already. A month in the hospital seems like an eternity. But I know that things always seem longer at the outset. Sometimes it’s just 45 minutes of boot camp or an hour-and-a-half of Bikram yoga, when I’m not feeling particularly ready to push myself. Every now and then, in the first few minutes, I despair. How am I going to make it through 80 more minutes?

But I do. I had the same feeling when I signed up for a 30-day Bikram yoga challenge. When I marked off those first few days, the month stretching out before me seemed so long.

I have to be patient. I have to draw on the patience that comes from working on the same 26 poses in Bikram yoga. Or the patience from a Kundalini breathing exercise. I can do this.

Encouragement and support go a long way. Almost every day that I’ve worked out or attended a yoga class, I’ve been told that I could do things that I often didn’t think I could. (Sometimes, I felt absolutely sure I couldn’t, but did it anyway.) Eventually, I started to believe it. That’s been helpful for when I’ve had to endure being poked for multiple IVs that give me the heebie-jeebies or sit still for another round of tests.

People in classes have always been supportive—and that also extends beyond the fitness center and yoga room. I’ve met some great friends through working out, and I’ve received such nice messages from my boot camp pals, people I’ve met through yoga and the barre3 community.

Once I finish my hospital stay, I know it’s going to be a long time to regain my physical strength. I’ll be easily tired, and it will be months before I even get back to “normal,” before I can even think about working out. But thanks to fitness and yoga classes, I have the strength, patience and support that I need until I am back to 100 percent.

 

Good News, Unknown News

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

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

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

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

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

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

Better News?

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

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

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

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

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

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

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

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