A Pain in the Neck

My story, this story, will end the way all of our stories will end: I will die. The end.

How we get there usually isn’t really up to us, but obviously there are choices. Right now, I’m usually in pain from my tumors, and I’m often dehydrated and a little fatigued. I’m definitely tired of the daily IV infusions and having the Mediport accessed all the time. I try to keep up with electrolytes but it’s still a battle. Hospice has been looking more appealing.

I still have things to do that have been keeping me here. Some of them have been fun things: my birthday, my boyfriend’s birthday, hosting a Halloween party, friends in town. Others are painfully boring: Setting up disability logistics, trying to get myself to be declared permanently disabled so I can access my IRA early without penalties, scheduling nurses and IV deliveries with OptionCare, which has become increasingly and noticeably less efficient within the past month.

I feel terrible, but my last scan doesn’t show many tumors. The tumors that I have, however, are aggressive and producing a lot of VIPoma, the hormone that makes me sick. Drugs and octreotide shots don’t even really help much. My body just seems to be wearing out from the stress of being sick. I’m bewildered that such tiny tumors can cause so much pain.

Walter White: Me.

As I mentioned in a recent previous blog, my body has been trying to kill me, on and off, since 2012. Doctors have bought me time since then, but it’s like I’ve been on the run from cancer, first Hodgkin’s lymphoma and then neuroendocrine tumors. It’s relentless in hunting me down. It wants to win. It’s going to win, eventually. I made the analogy of being on the run and now cancer has surrounded me, like the authorities closing in on a criminal on the lam. I have been ready to come out slowly with my hands up and surrender to hospice.

Or am I? I would do anything for even a few months of normalcy. After the tumor board discussed my case, there is one more outside-the-box thing they can try. It might work. It might not. I met with the surgeon on Monday. I have three spots on my liver, one on my pancreas, and two in my bowels. My pancreas tumor is inoperable. It’s too close to a duct and they would do a risky surgery only if it were the only tumor and it could possibly cure me; that’s definitely not the case here. The liver tumors can be lopped off and it’s very likely the bowel tumors can be removed as well, but he won’t know the extent until he gets in there.

I had thought I also have a chest tumor but that wasn’t mentioned, so I am asking about that.

It’s not a small surgery. They would re-open my Whipple incision and then cut even further down. They wouldn’t offer it if there weren’t a chance of working, but there’s a chance it might not work. It won’t be as big of a deal as the Whipple, but it’s a month of recovery.

So it’s up to me.

I’m obviously going to do it. I can either go to hospice in a few weeks or try this. The way I see it, either: 1) I’m going to go into hospice and die within a month, 2) I can try this and it won’t work and I’ll still go into hospice and die, 3) I can try this and feel better for a little bit and then die.

Tony Montana: Also me.

Instead of coming out with my hands up, I feel more like Tony Montana in Scarface with a grenade launcher. When I made this analogy on social media, several friends have promised to have my back. “I love the comparison,” noted one friend. “You need a giant bowl of cocaine like right now.”

For all the tough talk though, I might be saying you need an army to take me, but that’s not quite true at all. Sometimes I feel so tired and weak, I can’t imagine making it to November 12 for my surgery.

And I could always get hit by a bus. People say that sometimes as in a you-never-know way, and then it almost happened yesterday. It wasn’t a bus though. After attending the premiere of Last Christmas with my friend visiting from LA last night, we ordered a car home through an app. Our driver appeared to be tired and we had to locate him half a block away. I rarely pay much attention during rides and so when we were on the FDR, I didn’t notice that we were in a lane heading full speed toward an abandoned car with its hazards on. Luckily my friend noticed, and she screamed for the driver to stop. He stopped just in time, leaving inches between us and the stopped car. The car behind us was inches away from us and luckily swerved in time. The driver also almost went the wrong way down a one-way street close to my apartment but I noticed and stopped him. I feel bad because he almost killed us but it was clear the driver was really tired. I think he shouldn’t have been driving but needed the money. It was sad.

So after all that worry about the surgery, I almost met my end yesterday on the FDR. I think it’s a message from the simulation runner not to speak of the simulation.

I am almost positive I’m going to go through with the surgery, unless they can’t do anything about the other tumor. But you never know: I could get hit by a bus tomorrow. I hope I can buy myself some more time.