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.