Memorial Sloan Kettering Cancer Center :: 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.

Lemonade and a Hail Mary

As I noted, I was supposed to be in Pasadena last weekend for the Cure concert and to see my LA friends. I require daily hydration and am not excited about traveling with an accessed Mediport and fluids and possibly faulty legs prone to giving out unexpectedly. So I stayed here. New York City is my favorite place, and it’s the center of the universe and it has my heart, so it’s not so bad. New York and I are a week and a half from celebrating 11 years together. (Well, I am celebrating. NYC likes to play things cool.)

We did a staycation, first one night at the Dream Hotel, then the second night at the Gansevoort Hotel a few blocks over. Most of the time we lounged by the pools, aside from a detour to Memorial Sloan-Kettering for fluids. (To have my port accessed and then de-accessed for pooltime, I went in for fluids.)

I rallied. I went to a backyard barbecue in Brooklyn last Saturday, did some light gardening on Sunday, ate a Labor Day hot dog—a chili dog, in fact—last Monday. This week I went to a storytelling event and comedy show and to the office and to a birthday party. “You don’t look sick,” some people tell me. I notice that my bicep is as big as the chili dog. My guts roil. My insides hurt. Since I am only going to get worse, I’m trying to rally as hard as I can before the end. But I never feel well.

I had fun on my staycation, but sometimes I’m tired of making lemonade from this pile of lemons. At this point, I feel like my hands have been sliced up with a mandoline, and the lemon juice stings. I can’t bear to make or drink another glass of lemonade. I’m out of sugar and it’s sour and makes my cheeks pucker. I’m out of patience. I’m out of metaphors. I wish I were Beyoncé and my lemonade made me millions.

I had my first post-PRRT follow-up with my oncologist, and I brought my health care proxy and my “bad cop” who comes with me to doctor appointments. We were armed with questions about hospice and any possible last ditch treatments. After my New York Times article, people had offered their top health care advocates and services like Cancer Commons to leave no stone unturned. The info was ultimately helpful, but the main downside of having the best doctors at one of the top cancer hospitals is that they’re aware of everything that’s out there, unless there’s a mad scientist on a rainy mountaintop with a bag of radioactive spiders sewing brains into repurposed bodies. Once they say there’s not much they can do, that’s kind of it.

And there’s not much they can do anymore. I knew this day would come, but I’d hoped the PRRT would buy me some time. It didn’t. One thing that came up with the health care advocate and a conversation with someone on the Smart Patients website is Keytruda (also known as Opdivo and prembolizumab). It’s not approved for neuroendocrine tumors because the immunotherapy hasn’t worked for a lot of people. They’re getting a compassionate release.

Right now, my tumors hurt and they feel like they’re spreading. I feel worse every day. I’m tired. I have to do IVs and supplements all day. I rally but it’s harder. The side effects could be bearable, though it also could make me feel worse. It works better with other drugs, like Yervoy and PV-10 (sometimes 19% rather than 3%), but those could give me worse side effects. It’s a Hail Mary pass. It’s unlikely to work.

My first infusion is September 18. I have so much to do before then. I’m wrapping up work before disability. I hate the idea of not working. I can’t do any work at all so I’m frantically writing and submitting before September 17, my last day of work. My mom is in town.

Today I decided where I would like to die. I had plans to tour three Calvary Hospital facilities. My oncologist and I talked about what to do when the pain and side effects when they become unbearable. I have decided to stop electrolytes and hydration when that is the case. The best place would be inpatient care, but I would probably have to do home care first until I declined enough to qualify for facilities. The Bronx facility is nice but far away.

I was told I could just pop by for tours of the Manhattan and Brooklyn facilities. When I got to the Manhattan location on the Upper East Side, I just didn’t get a good feeling from the moment I signed in. When I went to the 15th floor Calvary area, I stopped at the front desk and told them I was going to take a tour. “You’re going to have to wait because we’re in a meeting,” said the nurse. “How long?” I asked. “Ten minutes,” she said, before disappearing back into her meeting. I wanted to joke that I had less time than most, but I bet most hospice-type places get that a lot. Plus the nurse was gone, and there was no place to sit and my bones hurt sometimes. I wandered the hall for a minute then left. If I didn’t like it for the eight minutes I was there, I wouldn’t like to die there.

Next up was the Calvary location at NYU Langone in Sunset Park. Not too far like the Bronx or too rude like the Manhattan location, I decided that was a nice place. I’m still too well for hospice but once I stop taking my hydration and electrolytes, I decline fairly quickly. My main concern is that the side effects of the Keytruda might push me into hospice or my tumor symptoms keep progressing rapidly.

I have so much to do. And this is a deadline. An actual drop-dead deadline. I won’t ever get married or go on another vacation, but there’s a lot of weird little things I think about. I’m afraid to start watching a new TV series. I have a bunch of books to read. I waited too long to buy photo frames for my Spain pictures. I am annoyed I have to buy so many garbage bags in a pack when I will be around to use how many? Six? Ten?

People kept asking when they could drop in to see me, and I won’t be accepting visitors for much longer. I spent this past year saying goodbye. I’m tired. Everything hurts. I am stealing my former neighbor’s “living wake” idea and having kind of an extreme going-away party on September 14. I want to be around for my own party. I know that’s not for everyone, but I think of all the chances I missed to say goodbye to friends who died young. It will be celebratory: a happy time in the midst of a greater sad time.

I Google the hopeless statistics and cry a lot too. I didn’t get an extra few months of wellness. I’m angry. I’m sad. I’m tired. I’m disappointed.

As I spoke to the supportive care people about end-of-life things at Memorial Sloan-Kettering, someone said I seemed very matter-of-fact. Sometimes I am going over something with a friend/loved one and their faces have crumpled and I have forgotten that I’m talking about my death. It’s another to-do sometimes. I’m maybe not dealing with it properly.

Sometimes, when the pain in my right shoulder is too much or I feel too sick or my IV pole has fallen over again or I am taking hateful shots of potassium, I look forward to the end. I want to be free of this broken body already. I don’t want to leave, but the next step is off a cliff into the unknown. It offers nothingness. It offers freedom.

PRRT

I’m radioactive. I actually have to keep people at arm’s length for five days so I have to be somewhat isolated. It’s a weird time to do so when I’ve been asking for more support than ever.

As a mosquito flew by my face Wednesday evening, I wondered if it bites me while I’m radioactive, if it would die or turn into a superhero mutant. Half-asleep, I wondered if I should phone the on-call oncologist. I learned yesterday that I was the first non-clinical trial patient at Memorial Sloan-Kettering Cancer Center to receive the Peptide Receptor Radionuclide Therapy (PRRT) treatment. If I did call, would they would just stop offering this treatment in the U.S. immediately? That’s it: We can’t have nice (neuroendocrine-tumor-blasting) things.

From my understanding, the cancer cells have receptors for peptides, and this is how octreotide, a synthetic hormone I already inject three times per day, works to combat (somewhat) the diarrhea-inducing hormones produced by my rare VIPoma tumors. The PRRT works by combining the octreotide with some radioactive material. The tumor welcomes the octreotide, which acts as a Trojan horse, escorting the radioactive peptide into the cells and treating the tumors from the inside. The destruction of some of the cancer cells may cause even more release of the hormones that are causing the diarrhea and other side effects, so it’s likely I may feel even worse for a five to seven days, as I did after the chemo. (Hopefully this doesn’t mean any blood infections. Twice earlier, the increased symptoms have caused klebsiella bacteria to sneak from my gut into my bloodstream, especially because of the rerouting of my digestive system after the Whipple procedure.)

This won’t cure my cancer and it might not even shrink the tumors, but it’s aimed at controlling these symptoms so I can have at least maybe six months of normalcy. I’ve also been feeling a little bit better after the two rounds of chemo I had.

Wednesday morning, I went to MSKCC’s Nuclear Medicine department for my first round of PRRT (Lutathera). I spoke with the doctor and had everything explained to me once more, including the short-term and long-term side effects. Treatment is once every two months and I am slated for four courses of treatments. I also will do bloodwork every two weeks. (Also, some good news from last Friday’s bone marrow biopsy showed no myelodysplastic syndrome, something that I am more at risk for after all my chemo and previous treatments.) If the bloodwork doesn’t look good enough, there’s a chance the treatments may be rescheduled.

In addition to the half hour of Lutathera, I also received anti-nausea medication, as well as four hours of amino acids to insulate and protect my kidneys from the radioactivity, as well as Decadron for a boost. One of the lumens in my PICC line was blocked, so I was unable to do my hydration in the morning, so I also received some fluids.

Since I am the first patient at MSKCC to receive the PRRT as not part of the clinical trial, a few other doctors were there to observe, including a doctor from the Treatment Center Rotterdam, where this treatment was developed.

As much as I wanted to stay awake for my first round, I kept falling asleep during treatment. I was physically and emotionally exhausted. I have been too upset to get a good night’s sleep most nights, but this week, I also had an old friend in town and we stayed up late talking one night, so it was nice to have a happy reason for sleeplessness.

The good news is that amid my infusions, I was taken for a scan, which showed good uptake in the pancreas of the Lutathera. I hope this means that the treatment is effective and I can buy some months of normalcy in my life. After the break from chemo, I have had some physical normalcy and strength return.

Emotionally for the past three to four weeks, I have good days and bad days. Wednesday was a bad day. I felt like battles and wars were being waged in my body and my mind, and I was just so tired. I fell asleep while nurses spoke to me.

When they asked if I have anyone at home, I broke down in sobs. If I could magically stop being so sad, I would. On Friday, I cried so hard at my bone marrow biopsy appointment, I got a hug from a stranger and another from the nurse who took my blood. When the nurse practitioner for my lymphoma doctor asked me how I was, I started crying and got a third hug.

I’m not supposed to sleep next to anyone for the next five days, so it is perfect timing. After 12 years, my boyfriend and I broke up. I have all the breakup emotions: I’m sad. I’m angry. I’ve been asked to not be so public about our split, so I’ve been trying to straddle the line between asking for necessary help with both practical support (doctors’ appointments, places to stay) and emotional support. When it comes to emotions, I overshare. I have this blog in which I overshare regularly. I’m trying to respectfully share only my own stuff and not those of other parties. Things are complicated.

I am not a woman of calm dignity. I wish I were. This is who I am: I am messy and emotional. I am going to cry every day for months. Since I try to hold things in, I cry in front of strangers in public instead.

I can’t do a lot of the post-breakup stuff. I’m balder and even more funny-looking than usual. I can’t work out. Khloe Kardashian is not going to contact me about a revenge body. I just want a body that doesn’t have constant diarrhea. (And that looks like it is happening! I mourn my loss of core strength but every night without a diaper is a sweet victory.)

I can’t drown my sorrows and indulge in other self-destructive behaviors, although that is probably a good thing. However, recovering and being somewhat isolated allows me so much time to sit around and feel sorry for myself and cry radioactive tears. I have to specially quarantine and throw away wads of tissues. I suppose that’s incentive to pull it together right there.

So. I’m 40 and I have cancer and I thought I’d be facing the the last year (or years) of my life alone. This is something that happens to other people. But I’m not alone, not at all. So many people have reached out and have banded together and filled my life with so much love lately. I just need to get through this.

Breakups take so long to get over though, especially for me. When I went through a friend break-up years ago, I cried every day for almost a year.

I don’t have the luxury of time, though. I have this six months of treatment and then I have maybe about six months of feeling well. As soon as I am OK from this, I think then I’m scheduled to die or get sick again. This isn’t a normal situation. Sitting around being sad isn’t an option.

Instead of thinking about how long I’ll be sad and when and if I’ll stop hurting so much, I need to focus on all the positives I still have.

I try to remember what I learned from previous breakups: Don’t let this ruin things. I’ve had really good things happen during post-breakup times and there’s always a cloud of pain and gloom that surrounds them. Actually, looking back, I think I mostly ruined things for other people with my long face and constant babbling about my broken heart. Ugh. I completed my third (and final) bucket list item of going to Roosevelt Island—by ferry, by train, and by tram. I watched Dark Water that evening with a view of the island in the background.

Some people disappear from social media during breakups but not me. I’m on social media all the time: What is going on? What is everyone doing? Anyone want to hang out? Does everyone want to hear about the boring minutiae of my life? No? Too bad.

In the meantime, even while I badger everyone into hanging out with me, I can assert my independence. Redecorate the apartment when I have the energy. The doctors keep talking about sending me home with things, and I feel like I don’t have a home. Not my own, not quite yet.

I can’t be left alone with my thoughts for too long. I used to be somewhat obsessed with working out, but in this dried out, ill husk I am left with, I need a new hobby. I am signing up for meditation. I am going to all sorts of support groups, like Helena Bonham Carter in Fight Club, though I am probably more of an Edward Norton. The difference is these groups are relevant to me: metastatic cancer groups, young people with cancer (though I just aged out in October).

I am raw and emotional. Low-res memes with trite sayings currently speak to me more than they should. I need to do things to keep my mind occupied. I was raised Catholic; I could join a nunnery. I like wearing black and I would have a head covering. I have a shorn head; I could be a Buddhist nun. I am susceptible to suggestion and I don’t want to think about things. I would join a mild cult, but only if matching outfits/robes/tunics were mandatory and it didn’t involve fasting. If you have wanted to suggest something to me, now is the time to do it.

Though I have to keep people at arm’s length, animals are OK to snuggle with so my cats and my friends’ dogs are safe.

Some aspects of independence are less appealing. I have to wash my own clothes I wear for the next 10 days myself. This may be the worst part as one of my greatest joys of living in New York City is the ability to send my clothes out to a laundromat and have them returned to me washed and folded.

With all this radioactivity, I’m hoping for superpowers. The first one I’d like is the ability to get over breakups immediately. I want to become a better person, not a bitter person. I want to actually be a good person. Sometimes that seems like that would take superhuman strength.

I want to be able to move forward and look forward to the rest of my life as a time of peace, surrounded by people I love. I have to make every day count. I worry I am going to actually become a generator of low-res meme sentiments. Some days I’m like Kelly Clarkson in the “Since U Been Gone” video and other times I’m more like mid-aughts Britney. I’m like Mary-Louise Parker in her “Dear Mr. You” essay but less angry and more sad.

Mostly I’m me. Or I’m becoming me again.

Sometimes I don’t know how to move forward. If you have been through something difficult, how have you done it? This seems like the hardest place I’ve ever been in my entire life. Even full of radioactivity and the residual intravenous steroids, I worry I won’t have the strength that I need.

This isn’t an ending. It’s a new beginning. (Low-res meme coming soon.)

In the immediate future, I think I am taking it easy this weekend and seeing if the VIPoma makes me sleepy and tired.

My Old Friend Dacarbazine

I couldn’t sleep. I started this blog around 5:30 am, when I finally realized I wan’t going to be able to go back to bed. One of the strange side effects of the peripheral neuropathy is that sometimes I feel buzzy and kind of manic in the middle of the night. I actually haven’t been taking Gabapentin for weeks, but tonight, my feet, ankles and calves started cramping up, so I took it again. It’s been a long, kind of strange day. I started chemo again and have been reunited with my old companion Dacarbazine, the D in the ABVD treatment for my Hodgkin’s lymphoma about five years ago.

I headed to see the doctor at Sloan-Kettering today, hoping there was a plan B in place. The radiation only slowed down the side effects of the tumors (namely, the diarrhea), but it’s still pretty bad. I’m on potassium, sodium bicarbonate, phosphorus and magnesium, as well as the daily saline bags, just to keep me stable and out of the hospital. Plus I take atropine and imodium to try to slow things down. In the hospital, I took tincture of opium but my insurance company didn’t approve it for outpatient use. If it sounds like something you’d see an ad for in a Victorian newspaper, laudanum was a tincture of opium; if you’ve read The Alienist, it should also sound familiar. It was used by poets and writers Elizabeth Barrett Browning, Charles Dickens, Bram Stoker and Thomas Coleridge. Laudanum is not the same drug that I received, and that’s probably why I produced no brilliant poetry or literature while in the hospital, only a few blogs and some drool as I fell asleep for about a day after the first dose. After that, I received a half-dose, some bitter drops from a bottle that were placed in a syringe.

As I suspected, the radiation worked a little bit, but it’s not what we all hoped for. Scans show only the tumors in my pancreas and lymph nodes, but the oncologist thinks that there is microscopic disease and that small undetectable tumors are also producing the VIP hormone that is making me so sick. I got an increased dose of subcutaneous injections of octreotide, which is also supposed to fight off the renegade hormone, so I’m a little sore.

So it’s time for Plan B, which is Dacarbazine, every three weeks, probably forever. I looked it up on my older blogs and realized it was my least favorite chemo drug. There’s another drug that just got approved by the FDA, but then the hospital has to approve it and the insurance companies also have to agree to pay for it, as it has a $50,000 per treatment price tag. But that drug is something I would receive only four times and then be done, so I’m hoping it’s something that insurance approves and that I can afford. I’m not hopeful as the insurance company does not want to pay for the last day in the hospital, because they deemed it unnecessary. The hospital was trying to prepare me for life on the outside, where I wouldn’t have a steady drip of fluids and drugs, and where nurses don’t check my vitals and blood several times a day and feed me cups of medicine on a regular basis. I was feeling a little better, but not great. I actually would have been OK staying through Friday to finish my radiation, but I knew the meter was running on my hospital stay. I still had to poop in a bucket until I left. I would like to send the insurance company a full bucket to show my displeasure, so hopefully we can straighten it out.

(An aside: I picture someone at the insurance company looking through my bills, stroking his horns. He leans into his computer screen, smiling, typing a few notes and checking a box. Then he sits back in his chair, wrapping his pointy tail around the base of his desk chair, a habit he developed as a display of satisfaction when he found something the company could argue wasn’t necessary. He picks up his pitchfork, which he uses to eat lunch, and heads to the cafeteria to eat from a warm/cold buffet with offerings like candy stolen from babies, heapings of human despair of the sick, and the fruits and vegetables no longer in the SNAP plan with “harvest boxes”.)

Yesterday, I stayed at the MSKCC outpost for the rest of the day, got my octreotide shots and then zipped upstairs for a bone density test because I have osteopenia, a long-term side effect from my lymphoma treatments. I’m oddly not worried about those results as it seems my long-term is becoming much shorter. Then I went to one of the chemo stations. I got a little bag of some type of steroid to ward off nausea, since Dacarbazine causes nausea for a few days. I suddenly felt an itchiness that spread from my legs to my back and asked the nurse about it. She said it would last only for a few minutes. It’s usually in a more diluted form but a hospital supplier was affected by the hurricane in Puerto Rice, so this one is what’s available. It was fine, but a little weird. (I also have to take Dexamethasone for two days afterward, as well as Zofran, for nausea.) Then I received my Dacarbazine, which take a little over a half-hour, and potassium, because I was a little low at 3.1 instead of last week’s 3.7. It was diluted in a bag of saline, but with my PICC line, it’s much easier to do the chemo and the potassium, both of which sting and ache through an IV.

That brings me to my next bit of news: I’m finally getting a Mediport implant. About four years ago, when I was on a Brentuximab trial, I was scheduled to get one but I changed my mind, since I had only about six to nine treatments left. Since then, I’ve thought that maybe I should have gotten a port. One of the nurses at one of my most recent hospital stays (before the PICC placement) asked about my chemo history as she searched for a vein for an IV, and I rattled off: six months of ABVD, three months of Brentuximab, two rounds of ICE, and a stem cell transplant (though by then, I had a leukapheresis catheter in my chest). “It looks like it,” the nurse responded. Getting a Mediport seemed like admitting defeat before, but now I think I will need it for the rest of my life, and it will make things so much easier. It’s a permanent marker of sickness. The big Whipple scar running down my abdomen doesn’t bother me so much, nor do the 10 radiation tattoos. (In fact, I love saying that I have 11 tattoos. Only one is “real,” a small Libra symbol on my upper shoulder that a friend got for me as a present when we were 20. After these latest tattoos, someone told me, “You’re like Tommy Lee now.”) But the port for me will likely be as forever as my tattoos. I am scheduled to get it not next Monday, but the following Monday.

I was hopeful the Dacarbazine would work, but I’ve gone from declining to taking a considerable turn for the worse. I’m back to wearing night diapers, and my neuropathy is back with a vengeance. This evening, I became snuffly and my throat started hurting, along with my lower back. I was worried to take my temperature, because a fever would send me to the MSKCC Urgent Care, but I thankfully have no fever. My cheeks were flushed when I went to bed, so I’m thinking it was chemo side effects. For now, after talking to one of the oncology nurses, we’re going to keep an eye on things and see how I feel.

I’m getting really discouraged that nothing seems to be working. At first, the doctors said I could have years or even decades. Steve Jobs had eight years. I know I’ve had the tumors for at least five years, and I’ve known they have been active for two. When I found out in July that I was always going to have cancer and that it would be treated as a chronic disease, I thought I still had some quality time left, and I’m surprised that I declined so quickly. I can’t continue living like this, and I’m a little worried it’s going to be downhill from here. This life of saline and diapers could be as good as it gets. When I was in the hospital, it felt like it was the beginning of the end. I was coming to terms with big life things I wouldn’t accomplish, but now I’ve had to cancel some short-term plans.

If all my fluid and electrolyte loss doesn’t get under control soon, then I’m going to have to give myself daily octreotide shots. The focus is trying to keep me out of the hospital.

I can’t be out for too long. I haven’t been able to work out or go to my beloved metal and goth cycling classes or in-office building yoga. I haven’t had any alcohol or caffeine since New Year’s Eve. (That’s why I’m against dry Januarys and cleanses. As someone who has not been able to eat for weeks or drink for long periods of time, I say you should eat, drink and be merry while you can. Then again, I’ve always been a hedonist, so I’ve always eaten the cake or whatever memes tell you to do to indulge in small pleasures during your short life.) But I’m trying to focus on what I can do and not what I can’t. I can have friends over and do some low-key things. I caught up on some TV. I have spent a lot of time with the cats. There lots of good things, but I’m not sure what the future holds. I found out I had cancer five years ago on February 18, and sometimes I’m just tired.

That’s a sad note to end on, so enjoy these photos of cats I’ve taken during my post-hospital life.

Lulu held my hand.

All cats love Lux.

Handsome Ziggy on Valentine’s Day.

I was trapped under a pile of cats.

A cat in a u-pet carrier with stickers on it.

Lulu inside the space-age u-pet carrrier.

Ziggy wears a tie to help me with work.

Answers But Mainly Questions

The good news is, despite so much evidence to the contrary over the years, my brain appears normal, according to Thursday’s MRI. Relieved, we headed home from urgent care, and the next morning I went for a spine MRI. I am awaiting results with that familiar feeling of anticipation and dread, worried what it might show yet also worried it might not give any answers.

I feel myself becoming desperate—for answers and for hope. For four years, I have been trying to hold it together, through the lymphoma, the stem cell transplant, the first neuroendocrine tumor and the Whipple procedure, but now I feel as if I just can’t do this anymore. For the first time, I feel as if I’ve lost hope. I have been trying to continue on as normally as possible while trying not to do any physical activity that aggravates the nerve and muscle pain. When I do get a muscle spasm or, like today, pains deep within my calves, it’s not so much the physical discomfort as the sheer panic of not knowing what’s wrong (or what I can do) that bothers me.

On Friday, I called my oncologist to see if the numbness could be related to something my general practitioner brought up: paraneoplastic syndrome. It’s rare, but then again, so are neuroendocrine tumors, as is having two unrelated cancers at the same time. (I bought a lotto ticket in case my penchant for crazy odds could be in my favor, but yet again, no such luck.) The symptoms can include peripheral neuropathy and shingles after what appears to be a cold, and that all fits, though that is from my Googling and I really have no medical knowledge. I’m trying not to fall into an Internet hole reading about how the neuropathy is often irreversible, though it seems as if treatment for the underlying cancer can help. Unfortunately, treatment is on hold for at least another week until the shingles clear up.

The neurologist I saw this week seems to think the neuropathy and nerve pain is from the chemotherapy I had, but that what over a year and a half ago. I also mentioned to the urgent care doctor that my chemotherapy was a long time ago, and he said that it takes “a long time for these things to go away.” I never had such severe symptoms to begin with, though, so I am a little puzzled. He also said there’s “no magic cure for this.” Even without a magic cure, I’d like some answers and at least the possibility of relief, especially since this has been progressing for a month and a half.

I felt guilty for going to urgent care, and I felt even worse when I called the oncologist’s office and the person I spoke with on the phone questioned why I would go to the emergency room when I had spoken with the nurse the day before. (I could tell she sounded annoyed too.) “I just felt really bad,” I stammered. “I was dizzy and my head felt weird.” I knew it didn’t sound good. I don’t believe in wasting people’s time. What I wanted to say but didn’t, because I didn’t want to sound dramatic, was that I felt like I was dying. I have been sent to urgent care several times over the years and I know it’s a busy place with long waits, particularly if you’re lucky enough to not be in a dire situation. I wouldn’t have gone there if I didn’t feel as if I was about to pass out at my desk. “I really thought that I might die,” sounded ridiculous too, and I swallowed my words.

The terrible thing is that I think about death every day and the thought of no more pain or questions is appealing. Then I am appalled with myself. I have this thought every day. I know it’s terrible. It’s ungrateful. It’s an affront to everyone else fighting to live. Yet it occurs and I just let the sadness and disgust settle. Earlier this week, as I slept, I felt as if I could have died, as if death were an open door and I just had to slip through, but at the last second, I resisted. I woke up with my nose clogged and struggling to breathe a bit, so it wasn’t as dramatic as my dream state suggested.

I feel as if I’m becoming a pest, but the worse my symptoms become, the more desperate I feel. I have gone from feeling worried to scared to terrified over the past few months, and I am worried I have no answers in the future, only more pain and more questions.

My boyfriend, who listens to a lot of my calls to the doctors, says I’m not accurately describing the severity of the pain and numbness and he has always said I downplay my symptoms. It’s true. I feel as if I don’t want to bother the doctors with my troubles or I worry they think I am overdramatic. However, I think I’m past that point. My missives in my patient portal are sounding unhinged. Instead of “My head hurts and my body is numb. Should I be worried?” my recent messages are more like desperate pleas for help. When I feel bad or worry that I might be seen an impatient patient, I remember: They are not the ones who are in constant pain and discomfort. They are not the ones who can’t sleep because their muscles hurt and legs are twitching uncontrollably. They are not the ones who can’t do the same physical activity that was possible just a week ago. They don’t sit at their desks feeling as if they are going to pass out. Their chores aren’t hampered by deep calf pain. And they might not know how I really feel. I need to more accurately describe the severity of my symptoms and my concerns without sounding like a crazy person. (The latter, I’m afraid, is too late, but I suppose all cancer patients lose their minds from time to time.)

Before my Hodgkin’s lymphoma diagnosis, I was put off by some doctors for a few months and you would think I would learn. The difference is, I have confidence in all the doctors I am seeing now, but I’m starting to lose hope that I will ever get “better” and that I will always be like this. I need some answers and some hope, and both seem elusive.

Recovery

I haven’t posted too much on my recovery, because it’s pretty boring and gross. It’s mostly sleeping too much or being in some sort of gastrointestinal distress. Honestly, it’s a lot of hoping to poop, or at least hoping to poop in some sort of normal fashion without a lot of drama. Recovery from a lot of major illnesses or surgeries reduces you to an infant, with an existence that revolves around sleeping, eating and pooping. This post won’t be graphic, but if you’re uncomfortable reading about digestive issues—and pooping—then you should probably stop reading.

Still here? Good. I myself have been pretty comfortable talking about my gastrointestinal tract and distresses ever since I spent a few months volunteering in Mexico in the summer of 1995 with a program called Amigos de las Americas. The nonprofit has chapters all over the U.S., where high school and college-age kids train for months and then go to various places in Latin America to volunteer in different projects. When I was a volunteer, for example, a few of the things you could do included going to Ecuador to vaccinate dogs, or go do educational things in Paraguay and Costa Rica, or go dig latrines in the Dominican Republic. I went to towns near Guanajuato, Mexico, to make estufas lorenas, stoves that were better for your lungs, and also to talk about dental health and distribute things to make cement floors that would be more sanitary. Most of us got a little bit sick while we were there, no matter how many precautions we took. After experiencing long bouts of gastrointestinal distress, you get pretty comfortable discussing it. Sometimes, now, I forget and say too much or maybe describe something too vividly and I have to remind myself that not everyone is as comfortable with discussions of bowel happenings. I mean, it’s not like I talk about it at dinner in polite company, but I definitely could talk about it at dinner in company not so polite.

I’ve had to allow my digestive system to learn how to work again twice, but this time, with all the re-routing and removal of organs/organ parts, it’s been much more intense. I have so much more respect for babies. No wonder they cry. Gas pain and the general woes of digestion and elimination are no joke. I have nearly been brought to tears. One of the doctors said that some people find the gas and gastrointestinal discomfort to be worse than the incision pain, and I agree. As an adult, it’s kind of humiliating to having your life go back to that of a baby. It’s not as pleasant and relaxing as it sounds. You really have to sleep a lot and devote so much energy to eating and then not throwing up or pooping too much and dealing with gas pain and momentous burps. Poor babies.

It’s been three weeks since my surgery and I’ve been getting impatient, but the doctor reminds me that it’s been only three weeks since my surgery. From the outset, they said full recovery takes six to eight weeks. I had hoped that by now, I would be able to eat with less drama, but I still have gas pain and extremely unreliable bowels. Today, I decided to take the train to the doctor’s office, since it was in the middle of the day and people would be less likely to jostle me or ram into my incision. (Also, I am cheap, and cabs are pricey.) I had my usual quarter of a bagel before I left, but then regretted it. I thought about getting off the bus and catching a cab but I’d already invested $2.75 on my bus ride.

Once I got to the doctor, though, I felt a little better. (One nice thing at the MSKCC offices of doctors dealing with these issues: the exam rooms have bathrooms attached, something that is welcome in many patients’ situations, I’m sure.) He says my incision is healing nicely and I need to be patient. I’m going to feel tired, he reminded me, because my body is healing and devoting all its energy to that, and not much is left over for me. The Whipple is a big deal, and I was sliced open and things were removed and my digestive system was rerouted, so I suppose it’s pretty amazing that recovery takes only a few months.

I’ve been trying to go off the Oxycodone and the laxatives, but it’s a tricky balance. So far, giving up laxatives haven’t been a problem, and I haven’t needed them at all. My doctor suggested I try to eat some Activia for my digestive tract. I still have periods of time when I’m pretty miserable without the Oxycodone, which seemed to have helped with some of the gastrointestinal issues. I’ve been a little nervous about the Oxycodone. I don’t like the idea of taking it, though I never have any of the “fun” that people associate with “good drugs.” I had to take a big dose when I was fending off a pancreatitis attack about a month ago, and I felt better for about a half an hour and then I threw up.

Against my better judgment, I took the train home from the doctor’s office, and of course, the coffee I’d unwisely had while I was there hit my bowels while I was in the bowels of the city. I started to sweat so much, I felt like I was sweating through my jeans. Desperate, I finally had a pain pill hoping it would quell the rumblings in my abdomen. The good thing about the train is that being a sweaty lady popping pills doesn’t even put me into the top 10 percent of weird things happening.

By the time I emerged from the train to catch the bus, I was feeling OK, but still relieved when I saw the bus was coming right away. I made it to my stop and even popped into the community garden when I saw the gate was open to take a photo of my first spring crocus emerging from my plot.

Still, it’s best that I’m near a bathroom at all times. I just had about six of those pretzels with peanut butter inside and my bowels are now a roiling mess and my insides hurt. I feel like someone is pumping air into my belly and I might explode like a cartoon character. It’s seriously loud, whatever is happening. I’m worried I’ve ruined my dinner. It’s been hard to eat when you know it’s going to be followed by so much drama. People always ask what I can eat, and I answer I can eat whatever I want. I’ve been eating pretty normally lately, but just in very tiny portions. I found out the hard way yesterday that if I eat too fast, I’m rewarded with belly pain.

Today’s food, however, could be a quarter of a bagel and six peanut butter pretzel bites, and I can’t let that happen if I want to get my digestive tract on track. Earlier, one of my kittens ate an ant that made its way into the apartment, so surely I can at least find it in me to eat some yogurt.

I’m OK for long stretches of time, with pockets of sleepiness and times when I’m doubled over in gastrointestinal pain or discomfort. That’s how recovery is going—more slowly than I’d like. As the doctor reminded me, I need to be patient. Three weeks down, three to five weeks to go.

I Can’t Even

After falling asleep while reading in bed and waking up with my head tipped back and my mouth hanging open, I went into the bathroom to brush my teeth. When I got back to bed to settle in for the night, I noticed that a big spot on my T-shirt was kind of wet and sticky. I realized that the top part of my surgical incision has been leaking. It seems like the fitting end to the day—at least I hope it’s the last sad event of a bittersweet day and not the beginning of another sad day.

I changed T-shirts and called MSKCC’s hospital number for a professional opinion. The doctor on call said that unless I had a fever or didn’t stop leaking for a few days (!) I should be OK. My body might just have excess fluid that it is trying to get rid of. Currently, I’m sitting on my couch leaking my excess fluid out of my belly. While I’m sitting here, alone and scared, I figured I could cry some of my excess liquid out too. It hurts my abdomen to cry too hard or to laugh too heartily, though, so I’ve been trying to keep my emotions in check since surgery.

Today, as a day, hasn’t been particularly rough. I spent a lot of my time on the Internet and watching TV and I think maybe staring off into space, as I’m still taking painkillers for the belly pain.

At some point, however, I realized that it was three years ago on February 26 that I was diagnosed with Hodgkin’s lymphoma. If someone told me in 2013 that three years later I would be recovering from surgery for another type of cancer, I would have said, “No, thank you.”

This particular day, over the past several years, has had its ups and downs. Three years ago, obviously, was tough, when my doctor called me in to tell me that my needle biopsy showed I had Hodgkin’s lymphoma. The treatment was supposed to be wrapped up by September of 2013, but since I had two spots that wouldn’t go way (one lymphoma spot and the other, as it turns out, this pancreatic tumor), February 2014 saw me trying to remove stubble from my head after one round of augmented ICE chemo, preparing for my stem cell transplant. In my Facebook feed, a photo from that day showed up. It was a bittersweet picture: My recently departed cat, Akasha, putting a comforting paw on my hand, since my arm was inflamed with phlebitis at the time and I was in a lot of pain.

Akasha comforting me two years ago, when I had a case of phlebitis.

Last year was good—so good, I didn’t even commemorate it with a blog post. I think I was too busy having fun and getting my life back. I’d passed my January scan and had just started a new full-time job. I was done with cancer. The little blob on my scans was just something to keep an eye on, but nothing to really worry about.

Today, of course, I spent as part of my long recovery from my Whipple procedure to remove the neuroendocrine tumor from my pancreas. (I still have about six and a half weeks to go.)

I tried not to think about this anniversary too much, until I woke up realizing I’d sprung a leak and found myself too afraid to go back to sleep. Even now, all I can think is that I’m simply tired of having cancer. I feel like I just can’t anymore.

I had been talking to some cancer patients before my surgery for a story I had been working on, and one woman going through treatment told me how she and her husband ” just go through it.” There’s no other way to put it. You just go through it. No one gives you a choice to opt out of cancer. If someone did, I would have said after the first year that I would not like to deal with cancer anymore, and I would have said it after the second year, and I would say it this year too. But no one is asking, and even if someone did ask, it doesn’t matter, because I still don’t have a choice.

I try to stay upbeat and put on a brave face, but I have these moments. I am scared and I’m so tired of cancer already. I don’t want do to this anymore, but I just have to keep going.

In the meantime, while I’ve been writing this, I think I’ve stopped leaking, both from my belly and from my eyes, so my mind is at ease. Now I’m going to wrap myself up in blankets and get some rest, to prepare for the better days ahead.

After My Whipple Procedure: Home From the Hospital

Exactly one month ago, I posted the news I received about a malignant tumor on my pancreas. Today I am one week out from my Whipple procedure. Post-pancreaticoduodenectomy, I have no gall bladder, 16 fewer lymph nodes, a little bit less stomach and duodenem—and, of course, no more tumor.

I have been meaning to post an update, but everything has happened pretty quickly. As the February 17 surgery date approached, I was also doing the much-too-familiar rushing to a stop before a hospital stay, and trying to finish everything I could before having to rest—cleaning, social outings, work, freelance projects, working out. So many times I wanted to sit down and write to help me process what was happening, but I felt like every waking moment was booked. On my first full day back from the hospital and reunited with my laptop, I finally have time for an update. I’m sure I’ll have more ramblings as I impatiently await full recovery, but here’s the rundown on what’s happened in the past month.

After the findings of the endoscopy, I met with a surgeon at NYU Langone and one at Memorial Sloan-Kettering Cancer Center. Dr. Elliott Newman at NYU went over the endoscopy results, which showed the tumor blocking my pancreatic duct, thus causing the backup of digestive enzymes and recurrent pancreatitis attacks and inflammation. Though the biopsy didn’t determine if it were a neuroendocrine tumor or an acinar cell carcinoma, the treatment would be the same: Removal of tumor (along with the gall bladder, part of the stomach and a bit of intestines) with a surgery called a Whipple procedure. Since the tumor was in the head of the pancreas, where are lot of ducts intersect, it’s not as simple as removing the tumor, and there’s rerouting and reattaching. Dr. Peter Allen at MSKCC also said that I would need a Whipple and the type of tumor it was would be determined after taking it out. The only reason to do another endoscopy and biopsy would be if I wanted to put off the surgery for a few months. The doctors put my mind at ease about one thing—removal of the tumor didn’t seem really urgent. In fact, they said that a small tumor, less than 2 centimeters in diameter, would often just be watched, but this was clearly causing me problems and pancreatitis attacks.

NYU Langone had my pancreatitis and endoscopy records and MSKCC had my oncology records so I had to choose between the two. I feel as if I would have been in equally capable hands either way, and having the choice between two such reputable institutions isn’t a bad dilemma to have. Ultimately I decided on MSKCC because Dr. Allen could do the Whipple soon (even a week earlier, had I chosen that date, but that seemed too soon), and I was already very familiar, of course, with Sloan-Kettering. I had also used my current insurance with MSKCC and NYU’s billing system seemed a just little less clear and quick to go to collections. At least in my case, I have had more billing headaches with NYU.

Transferring medical records from one hospital to another is also an enormous pain—one that involved multiple phone calls, faxing, a $45 slide fee to get my biopsy results from NYU, a trip to the doctor’s office to get records that weren’t even what the other office needed. In the end, I was so equally annoyed with both, it didn’t factor into my decision.

I tentatively scheduled my surgery for the 17th, and I had pre-surgical testing the Friday before. I needed to reschedule my lymphoma follow-up CT scan from Feb. 22, so I moved it up earlier. If they found the Hodgkin’s lymphoma was back, they would have to treat that first, and everything would have to be rescheduled, so I didn’t really have an all-clear for the surgery until I got the results on Feb. 8. The good news is that my Hodgkin’s lymphoma is still at bay. If I didn’t have the pancreatic tumor, I would be given the green light to move ahead with my life without scans. From the lymphoma perspective, I am done, but this pancreatic tumor means I won’t be done with abdominal scans any time soon.

I had been having lower abdominal pain, and became convinced that if I could harbor two types of cancer at once, why not three? I scheduled my annual women’s wellness checkup that I had been putting off because of my insurance’s refusal to pay for some test they deemed superfluous (because if there’s one thing women love to do, it’s taking unnecessary pelvic exam tests so we can charge insurance companies, right ladies?) and then had to take a follow-up ultrasound. By that Wednesday, as I awaited my ultrasound and my follow-up lymphoma CT, somewhat convinced that I was probably teeming with cancer, I was in a pretty dark place. Oddly, once I was cleared after the ultrasound and CT, I felt celebratory that I had just one type of cancer.

In those weeks, I also wanted to take care of some other things I’d been putting off, like going to the dentist and getting new glasses and contacts. (On another happy note: I have spiffy new contacts that are a meld of hard and soft lenses so I can see details for the first time in years.)

Whereas the stem cell transplant was months of preparation, with the Brentuximab trial, the ICE treatments and the stem cell collection, the lead-up to surgery was really fast. In a way, this was good—I didn’t want to have too much time to think about it. I did my share of freaking out and worrying just within a month, but I was also so busy, I didn’t have much time to dwell on anything.

I had actually considered putting off the surgery for a month or two until a big work project was finished and until I could go home for my mom’s other hip replacement surgery. I had been urging her to have the other hip replaced as soon as possible when she went to her scheduled February follow-up doctor’s appointment, because I know it has been really bothering her. It felt selfish to have my surgery first, with its 6–8 weeks of recovery time. But I didn’t want to have to do another endoscopy to check the tumor and my pancreas has been bothering me—a lot. I haven’t been 100 percent comfortable since the beginning of October, when this all started. Some days I worried I should go home first and take care of my mom, and other days, when my pancreas sent out twinges of pain all day, I would have gladly opted for surgery immediately if possible. The Thursday before surgery, my pancreas hurt all day and I stood in the kitchen after breakfast holding my yogurt spoon, thinking that if I could scoop out my pancreas tumor right then and there, I would. I ended up getting some pain medication and going home early. An acute pancreatitis attack may have delayed surgery and so I thankfully made it through the weekend.

Wednesday finally arrived, and we got to the hospital at 5:45 am. The doctor asked if I was nervous, but I wasn’t. I was excited to get this out. It is weird, though, to know that you’re going to go under and then wake up sore with pieces of you missing. I’m pretty squeamish, so I don’t like to think about it. I got put under and in a few hours, my Whipple was done! The doctor told my boyfriend—and me, when I woke up—that the surgery went well, there was minimal bleeding and that even though the tumor was small (just about 2 centimeters at its widest point) the pancreas had been pretty inflamed. This was the first indication that it was a good decision to have my surgery sooner rather than later. (And that feeling vaguely sick for the past months hadn’t been all in my head.)

The second indication that a speedy surgery was the right decision came when the doctor talked to me about my pathology report before my release from the hospital yesterday. The tumor was a neuroendocrine tumor, as they initially thought. This is good news. However, it’s a well-differentiated tumor. I’m not sure what this means other than that it’s more likely to come back. The tumor had been increasing in size recently and becoming more aggressive; it had spread to one lymph node, out of the 16 removed. I’ll need to be monitored, with scans at least every four months for awhile. If it comes back, it will probably show up in the liver. I asked what I could do to prevent recurrence, and he said just to avoid smoking, which isn’t difficult.

The best part of my pathology report was the description of my gall bladder, which sounded magnificent: “green and purple” with a “smooth” surface that opened to “reveal an abundant amount of bile and a smooth velvety mucosa.” I’m a little sad about the loss of such a lovely organ.

Next week, I have a follow-up appointment, and I can ask some questions. Mainly, I am confused because if I have had it for so long, why did it suddenly become aggressive recently?

After I got home yesterday, I didn’t feel very celebratory, because I had hoped for the very best news—that recurrence was unlikely. I wanted to walk out of that hospital again and hope that I never had to spend a lot of time there. Also, now is the hard part on my end: Recovery. I spend a lot of time feeling blech, bloated and like the staples on my stomach are going to burst open like a piñata, releasing my remaining organs. I spend a lot of my time trying to pass gas and longing for smoothly working bowels, as my digestive system wakes up and learns how to work. I always feel like I’m in the middle of an ab crunch, and I constantly feel like I’m sitting wrong—either too far forward, or too far back. My back hurts. The skin around my staples is lumpy.

A friend texted yesterday to remind me that this is good news and very importantly, this is temporary. She’s right, of course. I’m happy that this pancreatic tumor is behind me and I’m looking forward to not always feel vaguely sick as I have for the past several months. Feeling better is just around the corner, and it is good to be home.

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.

A Happy Suprise

I got my blood drawn this afternoon and 15 minutes later, my room phone rang. It was the doctor. My blood count reached the magic number of 500 and I would be released! After the general consensus had been a Sunday discharge, this was an unexpected bit of good news.

As nice as Memorial Sloan-Kettering Cancer Center is, I was packed and ready to go in 20 minutes. After this morning’s breakfast Nutella and banana crepes and my jambalaya lunch, I was looking forward to tonight’s stir-fry shrimp, but I’ll be back at the hospital in a week. I also didn’t have time to check out the recreation center again and I was going to avail myself of the free board games tomorrow.

Also, I discovered there’s a pool table. How do you navigate a pool table with an IV in your arm? I also discovered that there’s an afternoon tea service. If the hospital had a happy hour and I could get a beer to go with my pool game, I might have found it harder to leave.

But I was tired of wheeling around an IV stand and I’d gotten away without peeing in a hat until today. I did figure out how to take a hot shower. I don’t know what it is about dials, but I constantly misinterpret them. I’m terrible at math, don’t know my left from my right and I can’t figure out dials. I think there’s some kind of diagnosis for that, other than being dimwitted. (I repeatedly burned things in the oven our landlord brought up to replace our broken one until I realized I had been misreading the dial. I had been turning things up to 400 or 500 degrees.) So in this unfamiliar shower, I had the dial pointed toward lukewarm instead of hot.

Today I found myself packed and waiting for my IV removal, two days before expected. I didn’t even have to change my pants, as I was wearing my brand-new dignity pants, suitable for public viewing. I threw on my boots and sweatshirt and was ready to go.

The only hitch was the car service I called to come pick me up. Since my boyfriend was working, I wasn’t being released to anyone and the nurse had to witness me getting into a cab or car. When I called right before 5 pm, the operator said 15 minutes, so the nurse escorted me to downstairs. At 5:18, I called to check. At 5:25 I had to call back after being on hold and forgotten about. “Two minutes,” snapped the person who answered the phone. Seven minutes later, I called to check again and was told the car was outside. After walking through the rain and asking several cars if they were for me, I had to call back because he’s hung up on me. By this time, I couldn’t get through. At 5:38, I called and was told to wait five more minutes. At 5:41, I called to cancel. At least I gave them the courtesy of an update. The front desk called me a car service that arrived in three minutes.

By this time, I was in tears, upset and having to have someone else waste her time, even though she so kindly waited with me and eventually ended up comforting me.

It’s always the little things that push you over the edge. Or push me over the edge, at least. Being back in the hospital was disappointing, but I had been OK up until the point where I couldn’t leave because of a car service. That was my breaking point. The car service just acted like they were doing me a favor. They had obviously lied about when they would arrive and even being there and then didn’t seem to understand why I was upset that they were almost an hour late. Once I even got into a car, finally, from another service, I couldn’t stop the tears. It wasn’t about the car anymore. The dam had broken and I just let things flow out. Quietly. Maybe a dam isn’t the right analogy. It was more like a slow leak.

I had been so angry, I worried my blood boiled and threw off my counts again.

But all is well, once again. As I type this, a cat is weighing down my right arm with her paw over my hand. I have a week at home, and all is right with the world.

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