A Pain in the Neck

I have allowed myself a sliver of optimism. It feels dangerous, like I’m holding something unstable and explosive in my hands.

Tomorrow, I’m slated for an embolization of some of the new hepatic tumors. On the images, there is one big one, but there are probably smaller ones as well. First I have a scan, and then the interventional radiologist will do the embolization of the tumor. This was something they were ready to do in January, but tumors didn’t show up on the CT scan. Now they have something to embolize.

The goal is to stop the diarrhea, and hopefully then my quality of life will improve and I won’t need to the needle in my port.

The interventional radiologist who did last year’s ablation stopped by today and explained a little bit about what to expect, including recovery. This has been a little bit of a whirlwind, since I didn’t expect to end up in the hospital or have this embolization, so I didn’t even think ahead to recovery. She said people often get postembolization syndrome after the procedure: fatigue, nausea, and pain. It’s typically bad for about 48 hours but I might get a pain pump, something I remember from my stem cell transplant days. Recovery isn’t as speedy as it is after ablation.

The doctor who is doing the procedure tomorrow also stopped in to explain some things and answer questions. Since I’ve had a Whipple procedure, I’m at a higher risk for developing an infection and a liver abscess. They will put me on some antibiotics as a preventative measure. If I do develop an infection, then I’ll need to have a drain for a few months. It sounds gross, and I’m not particularly excited for a longer recovery since my windows of wellness are increasingly short (a year and half after the stem cell transplant, eight months after the Whipple, seven months after the ablation).

Allowing for recovery time hadn’t even occurred to me. I’ve been living day by day, IV bag to IV bag.

But…a window of wellness. I’m daring to hope for a little bit more time. Not using diapers, no more daily IV infusions, a life nearing somewhat normal. For how long? The interventional radiologist said that I’ll definitely feel better. I asked the second doctor why they were doing only the liver, and he says those are the ones that cause the most morbidity and the most symptoms. The pancreatic tumors can sit and wait for awhile, apparently, but it’s these others that are more often fatal or cause health problems. It’s what led to Steve Jobs’ death and the death of Dave Thomas of Wendy’s.

Today I’ve had regular blood sugar checks. Yesterday, my nurse gave me an insulin shot after my results showed a blood sugar level of 700. I have no idea what that means, but the nurse was very concerned. My potassium was also reported as high. I love candy so much and had just eaten a few mini Cadbury eggs and was about to tuck into a piece of Pie Lady & Son cherry pie. I thought for a second my sweet tooth finally did me in. As it turns out, the results were wrong somehow, and then my numbers were kind of low so I had to drink some orange juice at night.

With this healthcare system, you always hear the ring of a cash register in the distance. I’m going to try to not have these blood tests anymore as soon as possible. The doctors had wanted to do a pregnancy test before the procedure, even though I have been post-menopausal for about four years. I know in the grand total of the hospital bill, the test won’t be much, but I’m not interested in paying even the $5 or whatever it ends up being for a test that probably shows up as $100–$200 on the bill before insurance.

With my current muddled mind, I hadn’t given much thought to the embolization possibly making me feel better, even if it means a week of pain. My apologies in advance if I don’t get back to you right away as I recover. I think I may be huddling with my pain pump and muttering incoherent things for a few days.

I’m allowing myself to be hopeful for some more months of wellness, the treasured times between tumors, doctors, treatments, the hospital. Three of my best friends are visiting town next week, and the plan was just for low-key hanging out. That’s still the plan and I’m hoping that this new plan includes less diarrhea and minimal pain. Since January, I haven’t allowed myself to make many plans, aside for some morbid end-of-life ones. I’m still prepared for the end. These tumors have been aggressive and persistent and resistant to treatment. I’ve been closer to death than I had realized in January. But if I could wring a few more good months out of this life, I’d like to.