It’s the Waiting That Sucks

I’m almost at the end of my planned chemo sessions. It seems like the tumor is shrinking. We have a consult with my oncologist and surgeon at the end of this month and they’ll probably set the schedule for the surgery. Knowing all that I still can’t make firm plans for what I can & cannot do for the next 7-12 months. This frustrates me, and more than I’d anticipated.

What none of us really know is what is really inside my pancreas. We get a hint at it from all the probes and CT scans, but as was explained to me, the tumor is a little like a shadow in a low contrast picture. If you know where to look you can see it, and even measure it but … you’re measuring it in only a single plane, you’re not seeing it in true contrast 3D.

Not only that, but I’ve been diagnosed as “borderline resectable”. That means that the cancer may have spread into the tissues of my major veins and arteries that run through that part of my pancreas. If that’s what really happened then the surgery can only remove so much of those parts before there’s not enough left over to patch back up, and of course I have to be patched back up regardless of what they find.

The first time we’re going to have real, hi-fidelity, full spectrum, out-in-the-open look at the situation is when I’m opened up in surgery. A lot of decisions will be made at that time; how much to cut, how far to cut, how much pancreas, stomach, duodenum, gall bladder, & bile duct to remove, and then how to sew it all back together so it has a chance of regaining as much of its original functionality as is possible given what was removed and how well it was done. It’s funny. I’m not worried about my surgeon’s abillities. He’s done a lot of this type of surgery on a lot of people, and that’s where the craft happens, and craft is the amazing abilities a human brings to a job, abilities that could only be learned from experience.

Anyway, to get back to my point, there is no way I can make any firm plans for the next 7 – 12 months because that’s the typical range of time it takes for a body to regain whatever functionality it still can regain after its been cut on. In that time I will learn what I can and cannot restore, so I’ll learn what I’ve lost. Happy thought: none of what I learn will be news of an improvement to my functionality, the best news I’ll get is a full or restoration of a function. So it beats dying fer sher, but day-yum I’ll be inventorying my losses.

I’m going through the stages, it’s not joyful but it’s not horrible either. The thing that irks me though, and it bugs me big time, is the fact that I can’t make plans for much of anything!!

Can I go to Burning Man? Can I be healthy enough to volunteer for some of my prior Black Rock Ranger contributions? Will and when can I be able to take long vacations? Will I be strong enough to do this, that, and all the other things? Right after the surgery, when will I be able to climb stairs without worrying about straining my abdomen and risking a hernia? So many questions. So many ways things can go …

I feel strongly ambiguous about committing money, time, or presence to prep for things like Burning Man, Rangering, vacationing with the trailer, visiting family on the other side of the country. The best I can do is set intentions and let that drive my investments of effort. Oh, and of course I live here in America, so I need to keep working at full throttle in order to get through this without a catastrophic debt load, so a huge chunk of my presence has been going there. At least it’s pretty fun to do. If only I could have my own budget.