Where am I today?

Months after this ordeal I’m still getting used to the “New Me”.

Like I said on the last post, every few weeks or so something starts working or working better. I still can’t taste anywhere near like before. For instance, I can’t taste sweet. But to some extent, I can taste salty, bitter, savory. Earlier, I said I could taste chocolate. But that’s if it actually has some cocoa in it. Remember, if I can’t taste it I focus on texture, which is weird. It makes you notice the bad or fake parts in food.

Take, for instance, Hershey’s chocolate. Turns out the sweetness is masking something nefarious. In this case, it’s the vegetable oil they use in place of the butter fat that should be there. So what I taste, is a weird waxy texture and vegetable oil with chocolate overtones. A friend gave us a chocolate cream pie. Looked awesome. My kids loved it. I could only taste crisco and salt, a huge letdown.

Turns out the more processed food is, the less of it I can taste. Which is probably a good thing in the long run. Things that are good for me, like seafood and veggies (slightly cooked) I can taste. Some bad things too, like fatty meats like pork shoulder or brisket. Lean chicken, pork, or beef I just get a texture I described to a group of people the other day as ‘wet kitty litter’. About the only starch I can handle these days is potato.

Since I have no saliva to speak of, I have to eat smaller pieces with some sort of drink. So it takes me longer to eat than everyone else. Then again, there is something to the idea of taking your time. Your hunger abates, and you get sick of eating long before your food is gone. Wine was another funny discovery. A fine wine from a new bottle tastes to me like MD2020 (a fine bum wine, for those who don’t know) left in the sun for a few days. Probably a good thing as well, alcohol burns my throat. That may change as it rebuilds. But for now, it’s best avoided. Actually, I was told point blank not to drink it the other day.

All this poses a huge problem for recovery. At one point one of my doctors said I should be taking in about 3000 calories a day. Not unlike with a burn victim, my body would need all that to heal. Given gimpy taste buds, and having to avoid dairy (Generates mucus and gunk), and bread (yeast) it’s a tough number to hit. These days if I get over 1500 I’ve had a good day. Still, my weight is holding steady.

Losing the weight was a gift. As my activity increases, and my intake stays the same, I’ll trim down to a healthy weight. I’m only 15lbs from my ideal if I were to believe the body mass machine in my doctors office.

Slowly and surely I’m building muscle mass and endurance. I’m still not anywhere close to normal there. And I go back to activities that were normal for me before, I find the weirdest things happen. I started back playing bass at church. I expected toting my gear would be a strain. What I didn’t expect is fatigue in my hands, or that I’d miss my callouses so much. We went to a nursing home to sing Christmas carols and I brought my acoustic guitar. An hour later, if that, my left hand was destroyed as if I’d never picked up an instrument in my life. That’s abating, but not fast enough for me.

So did it work, Medically? Am I cured?

Who the hell knows.

There’s a circular firing squad of incompetence between both doctors offices, the company that my insurance provider outsources approvals for scans, and me, who is determined to stick in a pet scan while my out of pocket is still red-lined.

To be fair, the radiology practice had a huge shakeup from what best is described as a tragedy, followed by some unfortunate collateral damage. The remaining staff is still very busy, and is having issues dealing with insurance shenanigans. The other doctors office staff has one nurse that’s fairly sharp, and an assistant I’d just as soon never see. They started this silliness by not checking with the radiology shop and started ordering scans like a bull in a china shop until something worked.

Every time a scan is scheduled, they schedule a follow up to discuss the results. I went in there for the third follow up in a month without an associated scan the other day. Basically, I was there for no reason. Their nurse was out so the other doctor’s nurse helped out by getting me in the office, doing the vitals and interview thing. A few minutes later, she comes back with the lightweight assistant who asked if I was eating yet and did I still have pain. This is the third useless visit to them in a month where I’ve been almost back to normal. Words failed me. I simply said “No, not for awhile” and left it at that.

They managed to get two scans approved, neither of which is important to me, and neither is of where the cancer was. So I know for sure it’s nowhere else. But I knew that going in. What I don’t know, is where I’m at. We’ll see if it happens.