A Pain in the Neck

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.

Lulu inside the space-age u-pet carrrier.

Ziggy wears a tie to help me with work.