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

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.

Back in the Hospital: Another Blood Infection

Every time I’ve thought about starting a post within the past few days, the laptop seemed too heavy and I’ve fallen into a deep sleep. As with last time, the Wednesday and Thursday of chemo were fine, but by Friday evening, I had a deep tiredness. It’s that kind of physical exhaustion that sleep doesn’t help, even though it’s all you can do. You don’t wake up refreshed, but just mildly not as sleepy for a few hours. My hemoglobin had also been low before chemo, so I got a transfusion boost. I’ve been fighting off a cold all week so I had to wear face masks to my doctor appointments so I don’t infect anyone. I drew fangs on my mask to celebrate my transfusion.

I should have worn my Bela Lugosi earrings.

I’d been feeling relatively well for the past few weeks; I’m not sure why I’d optimistically hoped that this chemo might not hit me as hard. On Wednesday, my hair started falling out, and it’s getting progressively patchy. My new insurance covers a wig (or at least part of one, as insurance often does after a series of steps: after a copay and a preauthorization from a doctor from an authorized place and then with a limit). I also have a list of wig places a friend gave to me that I haven’t had the energy to look at. My neighbors/community garden members set up a meal train so I came home on Wednesday to a home-cooked meal waiting for me. On Thursday, we celebrated the cats’ birthdays, and they were allowed a small bit of cheese. As I noted on social media, I was at the cheese counter, becoming increasingly annoyed with the man next to me as he humblebragged about how he had been a farmhand in Italy where his parents sent him after high school and how he was selecting cheeses for entertaining friends, when I remembered I was there to find a cheese most like Spanish manchego for my cats’ birthday celebration.

I’d been trying to boost my mood in small ways, but by Thursday I was starting to fall apart a little bit and become sad, and by Friday, I’d started to descend into a depression.

Cats airing out their bellies; cat realizing that the Eataly cheesemonger’s recommendation is not as delicious as her preferred manchego from Fairway; cat posing with candle; cat with a cheese plate.

Friday, I managed to stay awake for a movie. (I’ve never seen Singles. That’s weird. I know.) My guts started their post-chemo roiling and complaints that night. Saturday, I managed to read for a bit and put away my laundry and then I slept. Then I slept again. After I ate and watched the beginning of theRock & Roll Hall of Fame induction and wondered why love is a lie, I started shivering and realized I had a fever, so we called urgent care. They told me to come in, but then the fever went down. On Sunday, I was feeling better until around noon and then my fever returned. A bit after noon, we arrived at urgent care, where I slept and had blood cultures and tests taken, and we were allowed to go a bit after five, when a swab showed a rhinovirus (a common cold). I thought I’d beaten it but I guess I hadn’t so I left with instructions to rest. I watched TV and had taken my tincture of opium. I was in bed and was so tired, I didn’t answer the phone when it rang right before midnight. My boyfriend listened to the voicemail and called the urgent care doctor back: The blood cultures had shown bacteria in my blood, and I had to come back right away. In hindsight, I wish I’d gone in late on Saturday, but I packed up my things and went back to urgent care and arrived at my room around 3 am. I have my own room, since I have a cold, and people have to wear gowns and masks to come in.

This bacteria seems to have entered my bloodstream from my gut. My post-Whipple anatomy doesn’t have as many barriers to bacteria, so with my post-chemo exhaustion and diarrhea, mixed with this cold that hasn’t really manifested itself, was too much for my immune system, and bacteria got into my bloodstream.

At first, I was a little panicked about being here. I can’t be here. My mom is flying in from Cleveland tomorrow as my boyfriend flies out for a business trip tomorrow, and we had plans for Mother’s Day weekend. The soonest I can get out of here is Wednesday, and I know that’s a big “if.” I felt defeated and tired of fighting. For every victorious I-can-do-this pic or post, there are moments of feeling like I can’t and don’t want to do this anymore.

By midday, I’d cheered up and started feeling physically better, even with less roiling guts. I’d been cheered by the prospect of ordering off the new Sloan-Kettering menu, which got a makeover and some healthier options. (Farewell, beloved mozzarella sticks, but I was intrigued by the idea of the apple crepes special for breakfast and the new aloo chole and wheatberry crunch salad for dinner.)

By 5, I was happy that my biggest disappointment was that my favorite new neighborhood pizza place a few blocks from my apartment was giving out free slices tonight and I would have to miss it. “Are you OK?” someone asked, when I posted the event on social media, noting I’d be missing it because I was in the hospital. “No, I am missing free delicious pizza!” I responded. Around 7, however, I got the telltale chills and had another fever spike—not a good sign for my infection. I’m so upset and impatient. I need to get out of here, even if I don’t have time to try the new butternut squash ravioli. Really, though, I need to get out of here and get rid of this blood bacteria.

Update: More Dacarbazine

A few weeks ago, I pulled my clothes hamper on wheels behind my back from the laundromat, and my pants fell down. They were jeans that fit when I bought them out of necessity about nine years ago when I got nearly all the way to Montauk (during an overnight escape from our old Clinton Hill apartment that had flooded with storm sewage water) and realized when I rifled through my bag in the parking lot of Cyril’s Fish House that I’d left my jeans I meant to pack neatly folded on a dresser. At one point, these J. Crew jeans had even been a bit snug. Now they were at my knees as I shuffled up my stairs.

With the VIPoma compromising my digestive system, it’s sometimes like I’ve been granted a wish to eat and not gain weight, but it’s at a terrible cost, like in The Monkey’s Paw.

On Wednesday, I went to see the doctor and had another round of Dacarbazine in an attempt to control the symptoms caused by these hormones the tumors are producing. The doctor lowered the dosage a bit, since I felt pretty bad after the first round. Though I’m far from better overall and they acknowledge that I’m not where I need to be, there has been some improvement, so they’re going to continue with the chemo every three weeks and the three shots of octreotide every day. (Unfortunately, I’m running out of non-bruised places to do the subcutaneous injections.) I no longer have to take the phosphorus or sodium chloride, so I’m down to the lomodil every six hours, Zenpep for digestion with meals, gabapentin when needed for my neuropathy and twitchiness, and Levothyroxine for my thyroid. My potassium is low, so they gave me a boost and I’m taking four of those every day. It’s a marked improvement from when I was getting out of the hospital, and though I have been discouraged at the hours of daily home IV fluids and the injections and the diapers and just generally not feeling that great, at least there has been improvement—and getting me out of the hospital and home has been a great feat.

The doctor and nurse said something along the lines of, “We don’t want to alarm or scare you but…” Thankfully it was in the context of the past with an eye to the future. VIPoma symptoms can be fatal, and I get the impression I was a little closer to death in January than I realized. At one point during an early part of my hospital stay, I told my boyfriend that I really felt like I was dying, and there was something in my voice that alarmed him. (It was, I’m sure, different from my tone when I say I’m going to die of boredom when I’m suffering through a singer-songwriter performance or when I asserted that if it were possible to die of jealousy about his upcoming work trip, I would.) Someone who had been a paramedic said that part of the training he received was to listen for that in the field; when people say in a certain way that they feel they’re dying, they know something. It felt different. That night I called my mom, and I don’t remember through the hospital haze, but she says that I said, “Maybe you better come and visit,” and her heart sank. She’s coming again next week, and I don’t plan to be in the hospital this time, and while we won’t be zipping around the city, hopefully we can have a more normal visit.

I also got my PICC line removed, and my Mediport was used for the chemo, hydration and potassium. It’s nice to have my right arm free again, though I have to leave the needle in the Mediport for my daily IV hydration infusions and it’s a bit bulky. Plus it’s not particularly conducive to the more crowded trains during rush hour, when a crowd surge made me worry it was going to get pulled out, but I’ll probably get used to it. My needle needs to be changed once a week, just like my PICC line dressing.

No makeup, modeling my new port during chemo.

The plan, for now, is to continue with the hydration, octreotide and the chemo. I asked about the PRRT therapy that was just approved in late January, and it looks like it’s another month out from being available. I also asked if it would be a good fit for me, and there’s good news and bad news. My tumors have the receptors and that would make me a good candidate, but there’s a 1 percent risk of bone marrow issues/leukemia and I’ve already had a blood cancer with the Hodgkin’s lymphoma. It seems like if there’s a slight risk of something not working or being negative, I’m often in that category. On the other hand, would the VIPoma kill me before the risks would even present themselves? It’s not really completely up to me, of course. I’d like to do anything that could help to relieve these symptoms.

For now, I’m doing OK, but not great. I would love to be a little bit closer to “normal,” whatever that is. I make it to work and back. I have been able to venture out now and then for lunches and dinners, and that is progress. I’m sick, but I’m not as frail and sickly as you might expect. During all this time spent at home, I’ve managed to catch up on a few things, but I will never run out of things to do. I baked a cake, made some crafts, reorganized some things, done some garden blogging and planning, updated my freelance clip section of my website, got some reading done, put some clothes up on Poshmark, and have started about three longer blogs that are always sidelined by other things—mainly cleaning or dishes. I may have also taken the occasional cat photo or two. At this point, I’m a little bit hopeful, at least, that I can buy a little bit more quality time.

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.

A Year Later

This wasn’t the post I was going to write when I planned to mark the one-year anniversary of going to the hospital for my stem cell transplant. This was going to be a post about how much has changed since a year ago today, on the eve of entering the hospital for one month for an autologous stem cell transplant. I was planning to have people over to celebrate and watch the new Game of Thrones and celebrate my half-birthday, with my cats dressed up as dragons.

I want to preface this by saying that I’m OK, and, as far as I know, cancer-free. Yet I’ve been having some problems breathing and spent seven hours at MSKCC urgent care on Monday evening. I never wanted to have that hospital bracelet on my wrist again. The diagnosis was walking pneumonia, yet I still can’t breathe and there’s still a little doubt as to what’s wrong. I’m seeing a pulmonologist.

This started last Saturday, when I noticed it was a little hard to take a deep breath. It worsened throughout Sunday, and by the time I climbed the two flights to my apartment after an Easter feast, I was coughing, panting and gasping for air. (And it wasn’t just all the ham, sausage, potato salad, deviled eggs and desserts I’d just ingested that slowed me down.)

The problem was I’d signed up for a cycling class Monday morning and it was too late to cancel without incurring a $20 fee. I went to class and informed the instructor I couldn’t really breathe—problematic for a cardio class. He told me I could reschedule, but I just took it really easy through class and somehow made it. I scheduled an appointment with a general practitioner close to work and left for a 3 pm appointment. I didn’t come back that day.

After I saw the doctor around 4, and told him about my medical history, he wanted to send me to urgent care to rule out a blood clot. (That was before I told him I had already had a pulmonary embolism, and then he was certain we had to rule out a blood clot.) He wanted to send me to NYU Langone, but I thought I should go to MSKCC since they knew my history and since I have a pulmonary function test slated for this Friday. In retrospect, I realize this was a mistake, but…hindsight.

I arrived at urgent care around 5, and I’ve never seen it so busy. I knew it would be a long wait, because a blood clot could be serious, but I was still mobile and feeling OK and it was a ruling-out situation. The doctor there listened to my lungs and said it was good that the other doctor wanted to rule out a blood clot. I had a CT scan. I got out at around 1 am. The good news is that there was no clot. Officially, she said there was “something” there and they thought it was pneumonia. Not as much info as I would have liked after 8 hours, but she told me to call my MSKCC doctor for more info about the scan the next day. I got Levaquin antibiotics and took a cab home.

I was surprised at how much having that hospital bracelet on my wrist affected me, after being free of it for so long. It was like shackles. I was sad and scared, not knowing what was wrong. For nearly a year and a half, I was in a zone—keeping my head down and getting through something. After getting back to “normal” life, I felt ill-prepared to deal with tests and the pain of the contrast injection and the search for a good vein for an IV. My armor was rusty, my coping mechanisms as buried as my beat-up veins.

Because Mad Men is on again, I thought of the words of Don Draper in season one, “It will shock you how much this never happened.” (I feel like that about the last few seasons of that show. I can barely remember the plot. Will it ever get good again before the end? But that’s another post.) It’s not that I feel like cancer never happened, it’s just so separate from me. It’s lucky, I realize, that it hasn’t had many lasting physical effects. I’m surprised when I have a follow-up appointment. That might be another coping mechanism.

During the months of depression after recovery, as I tried to adjust, I was in a weird middle area—no longer a cancer patient yet not ingrained into regular life yet. I don’t know if there’s a way to strike a balance.

When I was discharged Monday, the doctor said it was probably walking pneumonia but she wanted someone else to look at the CT and I should talk to my doctor before continuing with the Levaquin. I called Tuesday but didn’t hear back, so I took the antibiotic. On Wednesday, I called again, and they said it was “atypical pneumonia.” My general practitioner wanted a follow-up on Thursday.

Wednesday night, my elbows started itching, followed by my ankles. Then blotches appeared on my cheeks. A trip to the ER was advised by my doctor if anything changed or happened, but I wasn’t interested in spending another eight hours in urgent care. I went to sleep and my rash had disappeared by morning.

The doctor sent me for X-rays on Thursday, and though the front desk told me I could go to any location on the sheet, only one did X-rays. After huffing all the way across town in the cold, I broke down and took a cab to the other location. My breathing wasn’t getting any better, and sometimes, I would wake up gasping at night. I would be panting so much by the first flight of steps that I could hear my downstairs neighbor’s dog rush to the door, thinking I was another canine.

Later that day, I had an appointment with a pulmonologist. While sitting in his waiting room, the tops of my feet started burning and a rash started spreading up my legs. It was the end of the day, and I rejoiced when the other patients left so I could scratch at my ankles to my heart’s content.

This doctor took me off the Levaquin because of the rash, and prescribed a Z-pack. The X-ray didn’t show any pneumonia, so it’s a mystery why I can’t breathe. He said something on one side is elevated, but he wants to see the CT scan. I came home and slept for 12 hours.

I called Friday and had to fax a request for a CD of the results. My boyfriend went to the mailing center (presumably to use a time machine to go back to when fax machines were relevant) to fax a form that I printed out and then he switched his work hours to go to the hospital to pick up the CD and take it to the pulmonologist’s office. Still, it was hours before the weekend, and now I must wait.

I cancelled my plans and have been trying not to breathe too deeply. My boyfriend thinks I sound a bit better, but I think I’ve become better at not exerting myself. The real test is tomorrow when I am out and about.

So here I am, a year after packing my bags and checking into the hospital for a month. The experience seems so far away. Yet spending this weekend cooped up, convalescing and taking it easy reminds me of all that time I spent in various stages of illness, in a limbo, waiting to be well again.

There’s no finite amount of illness you have in your life, but I’m mentally done. Logically, it doesn’t make sense, but just one more day not on my terms feels like it’s being stolen from me.

I was speaking to someone about cancer this weekend after hearing a few other experiences. You always try to focus on the positive, but the thing is that there’s no “good” way to have cancer. It’s always terrible and it’s always supremely unfair, no matter how old you are or the circumstances. While it’s good to be positive, it’s also important sometimes to acknowledge this, especially as I supposedly had the “good,” easy-to-cure cancer.

I have had a lot of time to think—more time than I would like—after being woken up gasping for air this week, or waiting for the itchy rash to calm down. There was more I wanted to say, but I’m still not sure how to put some of the things of this past year into words.

As for the breathing, I am, of course, worried. I hope it’s nothing chronic or serious. Right now, all I can do is continue to make my cats’ dragon wings.

Though I cancelled my get-together, I am still making the dragon costumes. (If you’ll recall, I also made them Tortuga costumes for the Breaking Bad finale and they were the cutest disembodied heads on turtle shells that you’ve ever seen.) Tonight, I’ll put aside my pulmonary worries and instead focus on the fate of the seven kingdoms and Don Draper.

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.

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