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.


Cat with her paw on someone's hand

Lulu held my hand.

Cuddling cats

All cats love Lux.

A cat on a a table with roses and wine.

Handsome Ziggy on Valentine’s Day.

Three sleeping cats on someone's legs.

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.

A cat wearing a tie behind a laptop

Ziggy wears a tie to help me with work.

Yesterday, I went to a cat party to benefit a cat shelter and entered the cat-themed costume contest. At first, I didn’t expect to even be a contender, because in New York, there’s always at least one to two people who go over the top. (New York is a good place to feel like you’re failing somehow and there’s something more you can be doing, from your career to a costume contest.) As a cat lady, I have a lot of cat-themed items, so I wore my cat print dress that my mom made me, cat earrings, a cat necklace, a paw bracelet, lion shoes and a cat scarf, and I topped off my look with a cat purse and cat ears. Sure enough, three women were dressed in Victorian outfits, carrying lacy parasols and pushing a vintage baby carriage with two cats, who were also dressed up and wearing hats. But there were only five people in the contest and three prizes, so I got my hopes up a little bit to take third place. (An adorable little girl with a cat mask, a cat dress and cat paws was a shoo-in for second.)

When the faux Jackson Galaxy announced the winner for third, I was Michael Keaton putting my acceptance speech back in my pocket at the Oscars when they named the girl in the bouncy cat dress. I can’t control my face, so I hope I didn’t look too disappointed, but I know myself and I hope I never see any footage. Was the mention of my cat underwear too much? Did I not get enough applause? Did I seem catty while sizing up the competition? I’ll never know, especially since I don’t like being onstage or being in the spotlight, so I don’t remember things very well when I have to do something like speak in public. My mind actually blocks things out, so I don’t fully remember interviews or presentations or even sometimes instances when I have to speak to a group of strangers; once these events over, there are blank memory spots and everything’s in soft focus.

After my loss, I thought of my scan tomorrow to see if any neuroendocrine tumors have come back and I did what I often do when I deal with my scanxiety: draw a line between two unrelated things that have no bearing on each other. Since I lost this, does that mean that I’ll also be disappointed in the scan results? Or does this loss mean that I’ll have a good scan?

It doesn’t mean anything, other than I need to invest in a bouncy cat dress or train my cats to sit in a carriage and wear hats if I want to get anywhere in the cutthroat world of catlady competitions. I actually worry that I haven’t been worried enough about the scan, and so I’ll be devastated if the cancer is back. It’s my mind trying to convince me that I have some control when I actually don’t.

Tomorrow I sit in the MRI machine, and then I meet with the doctor a few hours later. Don’t have cancer, I tell my body. Stop it.

In the meantime, I’ve been trying to have fun and ignore my peripheral neuropathy as much as possible. I also decided to extend my time off from freelancing a little bit, so I can have less money but more fun. Freelance work doesn’t actually take up that much time, but it’s always at the back of my mind, like that Peanuts episode where Charlie Brown has to read War and Peace over winter break. (I reference this episode a lot because I feel like this pretty often, but I often get a blank stare, so I feel like I might be the only person who so vividly remembers this Peanuts situation.) Last weekend, after a Nine Inch Nails cycling class, instead of rushing home to do work, I got an ice cream cone wrapped in cotton candy and met with a friend in Central Park. After an early morning workout, instead of trying to get some stuff done on the computer, I had time to take a stroll with a friend to Union Square.

Friends have even commented that it seems like I’m doing a lot of fun things. I am. I’m having fun. I’m going to concerts, taking the ferry to and from work when I can, exploring the city, riding my bike, spending time in the community garden, and even taking some road trips. However, I still feel as if I owe people I’ve seen an apology: Sometimes I’m not always completely present and am preoccupied with the neuropathy. The pain and numbness always seem as if they are in sharp focus, and everything else is a bit blurred.

The neuropathy colors my experiences in strange ways. For instance, sometimes when it’s bad at night, I wear a different T-shirt to bed, because a plain T-shirt seems more appropriate if I have to go to the hospital than some of my goofy old tees (like my big thrift-store Playboy bunny logo shirt, my idea of sexy nightwear).

Every time I make plans, there’s an asterisk or a footnote “*if I feel well enough.” A few weeks ago, we went up the Hudson River valley to Kingston and Hudson, and I felt terrible. A sinus infection had been slowly building, and I was dizzy and my sinsuses felt inflamed and twitchy. I finally went to the doctor for antibiotics the day before we left. The infection seemed to make my neuropathy worse, and I felt so awful, when we met the innkeepers, I felt bad because they seemed nice and I was worried my ghost would haunt their property and I would miss my boyfriend if I were a ghost so far away.

At that point, my head felt so bad, I thought I would need to lay down when we were walking around. My leg felt like it was bent at a weird angle one morning and it took a little while to become unstuck. It feels sometimes like I have Barbie limbs and they will get stuck if I bend or strain them. Once the sinus infection started clearing up, I felt much better. Far from 100 percent, but not terrible. I’m down from five to six gabapentins a day to three to four.

I even worked out eight days in a row, which is huge. Not being able to work out has really bummed me out. I still have to take it pretty easy, but it’s something. I’ve been packing my social calendar while I’m feeling better. I’m always worried my health will be taken away from me. I’ve seen a few neurologists, and they are of the opinion that this will all clear up on its own. I am getting a spinal tap to rule out chronic inflammatory demyelinating polyneuropathy. If it is, then there may be ways they can reverse the damage. If it’s not CIDP, then hopefully it goes away on its own or it’s just something that flares up every now and then and I’ll deal with it. There are treatments in the meantime I can opt for, including Cymbalta.

I hope my MRI is good tomorrow. I hope I learn from all of this. Maybe I am. I just got a call that I won something at the cat party raffle and wondered for only a second if this turn of luck would change my scan results. It doesn’t mean anything, except that I’ll have a great pizza cat shirt by the end of the week.

At a friend’s event for a book about her family’s genetic disorder, she talked about how she often thinks she’s having a stroke. “So sometimes you’ll be talking to me, and I think I’m having a stroke,” she said.

As someone who suffered from anxiety, I have had my share of trying to keep it together outwardly while inwardly wondering if I’m dying. I have had strange symptoms since October, but especially within the past month, I’ve felt strange. I’ll be talking to someone and suddenly get a sharp pain in my left calf or my toes will go numb. I’ll be on the train and I get a jolt of pain in my side or I stand up too fast and feel like I might pass out because of my low blood pressure. Oddly, my main concern isn’t actually passing out or the pain, but ruining dinner out or being the maligned sick train passenger who causes delays. My last thought, if I’m lucky enough to have a peaceful end many years from now, will probably be, “I hope this isn’t too embarrassing.”

For possible work leave, the doctor had to fill out a form listing why I might not be able to return to work for a bit, and she listed all my current symptoms: fatigue, diarrhea, nausea, anorexia (the medical kind where you just don’t feel like eating), weakness, pain. I have been trying really hard to keep things normal, but seeing it all listed made me think that I’m in pretty bad shape. Plus, I have the neuropathy and an eye infection, and just general inflammation all around, it seems.

I’ve been meaning to update this blog for awhile, but last night I ended up doing the dishes and cleaning a bit. What they find today will determine how the rest of my life could go, or at least the next few years. If there is only one, then I can get the ablation; there was a change of plans to avoid infection, so they would no longer also do the embolization. If they discover more tumors, then I just get the embolization and I would have to keep getting those done. It’s almost always bad news, so I don’t want to get my hopes up. Fingers crossed that I can get the ablation and avoid subsequent infection. I’m in the hospital for a day or two and then I can return home for more recovery. Either way, I should feel better after this. Thank you for all your kind thoughts and words!

“Millions pray for all we take for granted.”

A friend posted this the other day, amid the updates about the crisis in Syria, and I have been trying to keep this in mind when I find myself sliding into a pool of self-pity.

Chemo has been postponed one more week so my shingles can resolve. Yet the news is good(ish). After weeks of numbness, nerve pain and a strange lightheaded and dizzy feeling that I was fairly certain was an ingrown twin gnawing on my brain from the inside, I have been told my symptoms are probably all been related to shingles. My blood has been examined, I have had brain and spine MRIs and I had an EMG test, so I am relieved that even though I still feel pretty bad, everything looks pretty normal. Though it could take months for the shingles symptoms to go away, there probably isn’t lasting nerve damage.

I finally have some answers after two months and two ER visits, and so many appointments. Though the shingles rash showed up only a few weeks ago, it’s possible my symptoms dating back to October have been related to that. I have had some alarming symptoms over the past four years, from lymphoma tumors in my chest to the painful pancreatitis from my neuroendocrine tumor, but the numbness and nerve pain has freaked me out more than anything. The rapid decline in mobility and comfort has been the scariest thing. After improving for a bit, the nerve pain and twitching got worse this week, but the doctors say this is normal. I have an anti-convulsant called Gabapentin that I can take, but I have been avoiding it because it can make you spacey and wobbly, both of which have been already been side effects of the shingles for me.

I am actually looking forward to starting chemo on Tuesday, once I am done with my shingles medication. I feel like it will give me permission to take it easy. As I always do, I have been trying to cram everything in before chemo—from fun things like seeing people and having last hurrahs to things I need to do like errands and cleaning—and I think I wore myself down a bit when I need my strength for the coming months. As always, I feel a bit desperate, as if I’m trying to suck the marrow out of life before the unknown. Though the treatment doesn’t seem as bad as my previous chemo, I have a new nagging thought: What if I never feel better?

Though my boyfriend reminds me that it’s possible, it’s unlikely that I’ll ever be “cured” of this cancer. When doctors talk about living with a disease, the flipside of that statement is the pessimist’s view that living with a disease means you’ll eventually die from it. Some people say you don’t know what will happen, and this is true, but alternatives I can think of sound even less appealing. I could get run over by a bus. No thanks. I’ll take cancer. The doctors say I could have decades left, but I also worry about what I’d leave behind and what I thought I would do in my life that I haven’t (and most likely won’t). I find myself nostalgic for when I was recovering from the stem cell transplant and when I was recovering from the Whipple procedure, as physically tough as those times were, because I felt I had more hope. I still do, sometimes, but it’s slippery and harder to grasp these days. I hope that the side effects from the shingles clear up and I stop being so twitchy and weak, and the nerve pain finally stops.

Some chores make me sad, like cleaning the bathroom and doing the dishes. It makes my mind wander to dark places. My grandma would sometimes get depressed by ironing. Some tasks take your mind to regrets, missed opportunities, nagging worries. I was doing the dishes earlier, blubbering to myself and inexplicably repeating, “I don’t want to die.” Some chores, however, are the opposite, perfect for therapeutic reflection. Gardening makes me happy. A few weeks ago, I planted some bulbs in my community garden plot. It’s always an act of optimism, putting the bulbs in the ground and hoping for beautiful flowers in the spring. The year of my transplant, I missed the flowers when they bloomed in April but people sent me photos. I’m nervous as to what this spring will bring. As I planted, I thought about accepting limitations and found some peace with my latest diagnosis. I thought about the trying to grapple with the unexpected and accepting things as they are.

When I got home, as I threw away the bags that the bulbs had been shipped in, I noticed something. I had ordered some daffodils, as well as three types of tulips—one white and the other two in pastel shades so my garden plot would be full of complementary colors. When I opened the box in the garden, I had noticed that the description of one set I had ordered—a variety of soft purples and pinks—were described as “orange with purple flames.” Eager to get the planting done in the chilly December air, I hadn’t paid much attention. Then I saw a note attached to the bulbs: The company was out of the bulbs I’d ordered so the nursery had sent me these instead.

In the spring, orange tulips with purple flames will bloom among my soft pastels and white tulips. It is not what I planned, but it will be beautiful still. It was a perfect lesson for the day. I hope I can apply it beyond the garden.

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.


I am sitting in a place I hoped never to be again: the Urgent Care of Sloan-Kettering. I have thought about coming to the ER for more than a month (and even did end up at urgent care on vacation in October). I have even have had a little to-go bag packed for the past few days, something the triage nurse laughed with me about.

My symptoms come and go, but the numbness has gotten a lot worse, and I’m always in pain. It’s just a little bit of pain, and it’s not in the same place for long. I also get lightheaded and feel strange, but since it comes and goes, I haven’t known what to do. This past week I have felt increasingly terrible, to the point where I am afraid to move too much, because using my muscles makes them really twitchy and painful. I have stopped working out for now and feel like just a shadow of the person I was even a week ago. At work today, I felt really lightheaded and strange, with a buzzy feeling in my head. I had MRIs slated for Friday and Monday but I really feel alarmed since the numbness and pain has moved to my head.

I think I will probably be here for awhile. I always try to be grateful if I am in the best shape in the ER/Urgent Care. I’d rather be in this situation than being rushed in. I think they are going to do the MRI here. I am equally afraid it will show something or show nothing. I don’t want this to be serious, but I also want to know what this is, as I have been so miserable.

On the long cab ride up here, I watched the streets slip past (very slowly, aware of the meter) and tried to enjoy the luxury of a rare cab ride through the city and remember all the nice things. I passed the pub where Dylan Thomas drank himself to death (not a particularly nice memory, nor mine) but it’s also the place where me and another friend surprised my best friend, in town from Dublin, with U2 tickets when she came to visit me a few summers ago. I went past my friends’ workplace where we did lunchtime yoga and had lunch at her work cafeteria with a view of the river. I passed the Webster Hall area, where I have seen so many bands and just recently got to see a Q&A with A Tribe Called Quest. I also thought about how the driver should have taken a different route. But life has been good to me, and I need to remember that.

I was supposed to start chemo on Monday and took my initial doses that day and Tuesday morning, but I had developed a rash on Sunday that turned out to be shingles. My chemo is delayed for a few weeks until I get over the shingles. That was a bit of a disappointment as I was all geared up to do the chemo and now it will be at least a few more weeks. I had hoped these symptoms might be alleviated once I started the chemo.

I hope I leave here today with some answers.

As I expected, the MRI today showed that the cancer is back. The spot that they saw on the scan in late August is now about an inch, so they would like to get started on treatment right away. I am sad, but not surprised. A small part of me is relieved, since I have been feeling so bad for the past month and a half. (Though I do wish the tumor had waited until after I was back from vacation to start causing trouble.)

Of course, before I start the treatment, the insurance company needs the doctors to fax something to them, and I need to order the medication through the mail. Hopefully, I can start chemo the week after Thanksgiving. The treatment itself doesn’t seem too terrible. I take Capecitabine (Xeloda) twice a day every day for 14 days, and on those last five days I also take Temozolomide, then I take two weeks off. The good news is that it’s oral medication, since I have exactly one good vein left. It won’t be fun—side effects include fatigue, nausea and dry hands and feet, as well as a sunburn type of feeling. Mainly, however, the fatigue sounds like it would be limited to the latter part of the two weeks and the ensuing four or five days.

These chemo drugs don’t cause hair loss, though it’s kind of funny that my hair is so short now since I buzzed it to be Eleven from Stranger Things for Halloween. I’ll be able to eat whatever I want, nausea permitting, without the raw fruit, vegetable and fish restrictions. (Last night, a friend who has joined me for many “last meals” and “last nights out” and I went out for sushi, just in case it would be off-limits soon.) I can still work out as much as I want, energy permitting.

After three cycles, I go in for a scan to see if the tumor has been reduced. After the chemo, I may have an additional embolization. The doctor said there are a lot of treatments available for this neuroendocrine tumor.

The sad part is that it seems like this is about management. The tumor can go away, but it seems as if these neuroendocrine tumors might just be something I have for the rest of my life.

I also don’t know how long the rest of my life will be. But then again, who knows for certain? Some things make me sad—like holding my boyfriend’s hand and knowing I might not grow old with him. I don’t want to die before my mom does and leave her all alone.

It’s not quite time for such morbid thoughts, though. In my darkest times, I am tired of being sick and would like to give up. I think about how it’s lucky I don’t have children to leave behind, but I also sometimes have survivor’s guilt—couldn’t I give my life up to someone who made more of a difference or will do something important? I have always tried to enjoy and savor life as it is, and I will continue to do so. As much as I need freelance work sometimes, I am going to try to prioritize taking care of myself and being with the people that I care about.

I have been really sad the past few weeks, which has included the Indians’ World Series loss, the election and the worsening of my health. Oddly, it was the discontinuation of unlimited membership of my favorite workout service that brought me to tears earlier this week. It was the final tiny straw in a series of events—a final small disappointment that pushed me over the edge. This cancer news, though it has brought tears, hasn’t hit me as hard. It’s too big to grasp.

In my times of self-pity, I long for things to return to “normal.” It is what I have been hoping for since I found the lymphoma lump almost four years ago. A few months ago, I talked to someone else who was about to start treatment for her second type of cancer. We talked about limitations and how hard they are to accept. It is time I accept that things may never go back to the version of “normal” that I have wanted, and I’m learning to let go of things I thought I might have one day. I suppose it’s something that happens as you get older. When your timeline seems shortened however, it sometimes seems like, instead of letting go of your potential dreams gently and gracefully—like letting go of balloons that drift upwards into the sky as you glance up wistfully—disease comes along and pops them, leaving you confused and holding strings with deflated bits of rubber at the ends.

As I move forward, I will process this more and will probably turn to the blog to sort things out. I am looking forward to a final week before chemo and also to hopefully shrinking down this tumor.

Whenever I’m feeling better, I don’t have as much time to blog. Work and freelance projects need to be completed, my garden plot needs attention, workouts are booked—and, of course, there’s fun to be had. Whenever I feel overwhelmed, I think of the alternative that I’ve experienced while being sick—not being able to work, having to stay away from soil and gardening, not having the energy to do fun things. I’ve been so busy, I never gave an update on my prognosis going forward.

Basically, there’s a 60 percent chance that this cancer will come back within the next five years. When it does, it will probably come back in several spots in my liver. It’s too hard to get out at that point, so then I’ll just have cancer, and they treat it like a chronic disease with medication. It will buy me decades, they say. Since 60 percent is kind of in the middle, it’s not enough to give me preventative drugs and have me deal with the unpleasant side effects.

Steve Jobs’ experience with pancreatic cancer makes a little bit more sense now to me. He also had a neuroendocrine tumor and had a Whipple procedure. He eventually died after a liver transplant, so I assume that if the tumors came back to his liver, he opted for a liver transplant. (Since I’m not a billionaire or Frank Underwood, I don’t think this option is open to me, and I’m not sure if it’s the best option anyway.)

I haven’t thought about it much, because I haven’t wanted to. I wasn’t worried about the first scan, because it was so close to the surgery. Now that my second scan is coming up on Friday, I’m very worried. I want more time of being “normal.”

On Sunday, I was at the community garden, weeding the brick path, when I disturbed an ant hill. I brushed off the ants, but one got stuck in the worn fabric of my gardening gloves. It looked like its head was stuck in the threads and it frantically tried to free itself. I tried to help the ant, and for a while, I wondered if it was more merciful to crush it instead of possibly crushing a leg or antenna. I felt guilty: If only I hadn’t come to the garden that day, the ant wouldn’t be dying. After several minutes of both of us working together, however, the ant was free, and I was so relieved.

So yeah, I’m in a weird place emotionally.

For me, the question of the cancer coming back is not “if,” but “when.” People tell me to think positively and to focus on the 40 percent, but I’m a pessimist and I believe in trying to prepare for the worst even as I secretly hope for the best. The odds haven’t exactly been in my favor in the past. I was supposed to have six months of chemo for Hodgkin’s lymphoma, which didn’t go away, so I had a stem cell transplant. Having a neuroendocrine tumor is rare, and having two types of cancer is pretty rare too. (Our late kitten’s condition of FIP was also relatively rare.) I keep expecting a rare good event to balance things out. I’m genuinely surprised when I don’t win the lottery.

Instead of winning the lottery, I would settle for not having the cancer come back. Definitely. You don’t get to bargain, but that doesn’t stop me from trying, and hoping, even as I try to steel myself for the worst.

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.

crocusBy 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.

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

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

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

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

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

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

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

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

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

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