A Pain in the Neck

What would you do if you found out you had a year before you probably got really sick?

I met with the PRRT doctor at the nuclear medicine department at Memorial Sloan-Kettering today. The doctor explained what the regimen would be and how it works: it sounds like treatment is four and half hours that includes the PRRT, as well as something to protect the kidneys, every two months for four cycles.

The way that (I think) the PRRT works is that I’m given octreotide, a hormone I already take to try to curb the symptoms to combat my VIPoma tumors. The cancerous tumors have octreotide receptors, and when the cells bind, a radioactive peptide emerges, like a Trojan horse, and kills the tumor cells. However, when this happens, the VIPoma, the cause of the symptoms (particularly the diarrhea) would also be released and my symptoms would get worse for several days. I would be radioactive and have to avoid pregnant women and small children for a few days. I would set off detectors while traveling and would have to carry a card.

PRRT is finally available in the United States, though it’s been available for years in Europe, Asia, and Australia for awhile, so even though it’s a new treatment here, there’s quite a bit of data on it. My type of tumor (VIPoma), however, is very rare, so there’s less information about that. I think the doctor told me it’s effective in about 60 percent of cases. It doesn’t cure the cancer, but it often shrinks the tumors or keeps them at bay enough to stop the symptoms. People tend to have relief from symptoms for an average of three years. But—there’s always a “but,” especially when it comes to me—according to the tests that measure Ki-67 markers, my tumors are very aggressive. If it works, I would probably have about six months of relief.

I had thought that I was finishing the chemo cycles that remain, but it seems as if I’m going straight to PRRT. I’m slated to start the PRRT treatment on June 13. I’m getting a MediPort again on June 18.

I was supposed to have chemo tomorrow, but my blood counts are too low. The doctor said that the low hemoglobin is not related to the chemotherapy, but I’m not sure what it could be related to. I was very short of breath on Friday, but I was so upset and tired that day, I didn’t think much of it. I’m a little worried that the low counts may also put off the PRRT, which can cause some bone marrow damage.

Among the pros: PRRT causes limited hair loss so I’ll be a swarthy lady again soon. I’ll be able to travel, but I’m still limited by my access to fluids as I need them. (This weekend, I went up to the Hudson River Valley and needed help hoisting my suitcase to the overhead space because I had to transport three bags of saline. My IV pole is relatively compact but didn’t fit in any of my bags.) Also, I picked up my opium tincture at the pharmacy and my insurance now covers it; though it’s still $65 for a relatively small amount, it’s better than $125.

I think it’s the last thing they can try. After the PRRT, I’m not sure what would happen. I guess I would be sick again. Doing the math, I would have about a year, but that also includes treatment. I’m going to say that I have only a year left, because that means I will live forever. Maybe I’ll find a reason to hang on for longer, like if the last season of Game of Thrones is delayed. (I don’t want my ghost to haunt the offices of HBO because I don’t know who sits on the Iron Throne.)

It’s both longer and shorter than I imagined. I thought I was going to die in January. And now I might—if it works—have six quality months and six months that are OK.

It’s weird to know when things might end. (Spoiler alert!)

Of course, there’s always the unexpected. Don’t say I could be hit by a bus tomorrow. That is extremely unappealing. And unlikely, considering how slow they are. I was late to my doctor’s appointment because I had to wait 20 minutes for the bus.

Speaking of buses, I had a very short, attainable bucket list. It was about three things. The B61 bus would do a loop and go by the old location of Rocky Sullivan’s bar in Red Hook, then go to IKEA, and then stop near the bar again on its way to towards downtown Brooklyn. I always wanted to get off the bus, do a shot at Rocky Sullivan’s, and then get back on the same bus. I achieved this feat several years ago, though I wouldn’t recommend running down a block with a belly full of whiskey.

There is a restaurant in my neighborhood that offers a personal pizza for free with the purchase of a draft beer in the bar area, and I also did this a few years ago. (And the pizza is really good and of substantial size, and we also received garlic knots.)

The last thing is to go to Roosevelt Island. I’ve had a strange obsession ever since I moved here and had a car and would see the ruins of the tuberculosis hospital at the end of the island. My first gym was at 59th street near the tram. I would like to have a whole Roosevelt Island day with the tram and maybe the ferry, followed by a viewing of Dark Water, which takes place on Roosevelt Island, even though I can’t watch horror movies.

Really though, this is pretty good news. Hopefully I can get some answers to some of my questions tomorrow.