Words I Wasn’t Really Expecting to Say Yet

Cancer does not want me to do the things I’m most wanting to do. For example, my studsband, Mac, and I have been working to celebrate our three-year wedding anniversary at our favorite local getaway. So, of course when it comes time to wake up and leave for our trip, I have a low-grade fever and generally feel terrible. So I spent the next week in the hospital.

Somewhere early on in my stay at the hospital, a random neurosurgeon took it upon himself to tell me, unbidden, at 2 am, while I was asleep, what my prognosis was. I’ll get to that more in a moment, but I had a couple days there where I felt my autonomy was being taken away from me with no thought as to what was important to me.

Which is to say, I do have news.

In my last blog post, I talked about the 4 broken bones in my back, and my sudden loss of leg mobility. What I’ve since learned is that the cancer in my spine has progressed; it’s putting pressure on my spinal cord and is causing progressive weakness and increasing severe nerve pain—the worst pain I’ve ever experienced.

I sat down with my amazing oncologist and received the news from her that the risks of all possible treatments outweigh the benefits.

Based on clinical suspicion, my oncologist believes me to have not days or weeks to live, but something more on the order of one to three months.

As a result of this information, I’ve made a decision—supported by my family—to be discharged from the hospital into a home hospice program.

I don’t want to spend this time in the hospital; I want to spend this time at home with Mac and my community. I want to have the opportunity to let my people know how important they are to me. Though the circumstances really are shitty, I feel blessed to have this opportunity.

Now that I’m home, though, I’m learning that this isn’t as easy as I thought it would be. I can’t just plop myself back into my wheelchair and roll myself down the block. I’m in bed a lot. Yesterday was the first time I was out of bed. I sat in the wheelchair for a few hours before sitting in my recliner for a while. Then in the process of getting back into bed, I experienced such excruciating pain. Pain repeated today as we tried to get me back into the recliner.

Which is to say, this shit is hard. I’m lucky to have found my soul mate. Someone who tells me I’m not a burden even though I’m so clearly a burden.

One step at a time,