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

A Pain in the Neck: Coming Full Circle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The irony isn’t lost on me.

The Return of the Kraken

Almost exactly two years ago, on Record Store Day, I had a liver ablation to get rid of what they thought could be my last neuroendocrine tumor. (It wasn’t.) My ex went out that day to a beer event and to a show, and he took my beloved Kraken Rum umbrella, complete with tentacle handle, that I got at a media event. Only one of them came back that night.

It wasn’t my umbrella.

I called the bar and music venue. Friends offered to look. The umbrella was gone. My ex said the umbrella was hard to hold anyway.

My friend gave me her Kraken umbrella as a replacement. Another friend sent me an octopus tentacle pen.

Then, a few weeks ago, a friend who sometimes works at the music/event venue texted me a photo and asked, “Hey, is this your umbrella?”

There it was, in coat check.

It was as if it sensed it was time to return to me.

These past couple of years have been rough. I was told I would always have cancer. I had a traumatic 40th birthday. I almost died and for five months, until the new PRRT treatment, I watched myself deteriorate with no relief in sight. A 12-year-relationship ended. Something I had hung hopes on for six years evaporated in the course of 48 hours, and it hurt so much that the weight would pin me into bed some mornings.

Yet, I’m happy. It seems like every time something knocks me down—hard—I have to pick myself up, dust myself off and keep going, even if I am wounded or limping. (Sometimes, as was the case this week, literally.) “I don’t have time to be sad,” I explained to my friend who let me stay with her after my breakup and first PRRT treatment, when I was radioactive. I just don’t have much time. Months. Maybe years. I feel sick today and whenever I feel sick, I’m worried it’s forever.

A lot of things have been outside my control, from disease to other people’s behavior. I was telling someone last week that bad things seem to have happened to me, while I’ve had to actively make the good things happen.

A few weeks ago, I went to a talk about neuroendocrine tumors. When it came to the part about ki markers, I just remember that mine aren’t good. After PRRT, the average is 40 months of wellness. I was given six. My rare VIPoma tumors produce hormones that have terrible effects. I’m younger than most people who have this cancer. Most people think I am a caregiver, a daughter, not the patient. When they realize I am the patient, something in their faces shifts.

Sometimes it all catches up to me, and I cry out of exhaustion. Last week, I was the lady with the black eye crying on the train, my favorite place to cry. (As I have mentioned before, I don’t feel alone but I also don’t feel so vulnerable or like I have to explain anything.)

Oh, I gave myself a black eye last week. The black eye is a symbol of something. I’m still not sure what. I had gotten my chipped front teeth fixed and was ready to take on the world. Then my sick cat had to go to the vet, and as I ran to catch him to put him in his carrier, I tripped on cat-urine-soaked bedding and fell face-first into a trunk. The top of my eye socket hit the trunk lid so hard, I saw stars. It was like a cartoon: as I lay on the floor bleeding, the animated stars circling my head, the cat sauntered away.

I arrived at the emergency vet, bruised and bloody. “Is he hard to handle?” asked the vet tech, visibly worried, as her eyes moved from my swelling purple eye to the big tabby cat in his carrier.

My sweet cat Ziggy has been leaking since he had a bladder obstruction. On Friday, the vet said that maybe his bladder had stretched out and might not go back, and if that were the case, I’d have to put him down. He’s only three. He’s so smart and sweet that when I give him pills and they fall out of his mouth, he’ll try to dutifully eat the pill from the floor. He’s an exceptional cat, and I love him so much. Are you kidding me? I mentally railed. You can’t leave me this one thing?

Luckily, it seems as if the medication is working. I woke up last night to thunder and to three cats that had set themselves up diagonally across the bed. Ziggy, who was (and always is) snuggled closest to me, is drier and less groggy.

Saturday marked two years since my umbrella loss, but it was also another anniversary, according to Facebook: Five years earlier, I’d gone into the hospital for a monthlong stay for my stem cell transplant to treat my refractory Hodgkin’s lymphoma. That also brought up some complicated feelings: the hope I’d had then, when I didn’t know I had a second type of cancer.

The past several years in particular seem like they’ve been full of high highs and low lows, with very little in between. Not everything lasts. Often I’m preoccupied with good not lasting or wondering when good things will be taken away. It’s a particular type of suffering, I learned at a dharma talk this summer. But the bad doesn’t always last forever either. I’ve been trying to become comfortable with the fleeting nature of happiness. I’ve been trying to learn to be happy with what I have instead of what I want or what I think will make me happy.

While worried about Ziggy on Saturday, I went to yoga. It wasn’t the class I’d planned to go to, but I’d mixed up the times. Often when that happens, it ends up being fortuitous. After class, the teacher read an excerpt from Kahlil Gibran’s The Prophet, about the balance between joy and sorrow.

“When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, ‘Joy is greater than sorrow,’ and others say, ‘Nay, sorrow is the greater.’
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.”

It was exactly what I needed to hear.

Sometimes, when I realize I’m feeling OK, I’m so joyful. It’s nice when I’m well and not sick. (Conversely, when I am sick, I freak out it’s forever.)

I don’t know what to do with the rest of my short life. Who does? I live life intensely, but I always have. Sometimes I feel like I have to justify what I do, but I know that’s not specific to me. A friend pointed out that some people might always question my choices. Why am I still working? Why am I traveling? Why do I work out? (The last one is easy—if your time on earth might be limited and you want to stretch it out, 30 seconds of squat-jumps, burpees, or mountain-climbers seem like an eternity.) I don’t know what to do except march forward.

I’m afraid. I’m afraid I’ll get sick again soon.

But tonight, Ziggy was purring and playing a game on the iPad. He sits curled up with me as I type. Right now, we have this moment and are happy.

Mediport, PRRT?

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

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

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

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

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

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

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

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

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

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

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.

My Old Friend Scanxiety

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.

Today’s the Big Day

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!

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.

Shingles, Delay in Treatment, ER

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.

It’s Back

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.

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