I have now finished my second week at Progressive. The first week I had some major miracles that I didn’t write about because I didn’t want to jump the gun. Good thing too, evidently. They didn’t carry over into the second week. Now don’t get me wrong … it’s certainly not Progressive’s fault. They are just as awesome as they were the first day. It just appears that nothing is going to really work for me.
When I left Colorado, I had been on total parenteral nutrition (TPN) for three weeks because I couldn’t eat enough calories to maintain my weight, much less put back on the pounds I had lost. That hasn’t changed. I still don’t want food … not even the most nutritionally empty calories I can think of, like Krispy Kreme doughnuts. Don’t want ‘em, even if they were good for me. And folks seem to think that means I’ve given up or am just being difficult. Neither case is true.
Last week, I enjoyed a normal-sized meal for the first time in three years. Now that may not sound like a big deal, but let me try to paint you a picture. You know when you are just getting over a stomach virus and you see some pizza commercial on television and you have to look away before you gag? It’s like that when I look at any menu, no matter how tempting the fare. If the texture, consistency, and flavor aren’t just right, I gag. Salads and juicing? Forget about it! Every day of my life, three times a day, I have to stress and struggle to try to find a cup of something I think I can get down me that has enough calories to sustain me. That’s a really tall order. A cup of anything ain’t much and to try to cram 400-500 calories into that cup and get the perfect taste, texture, consistency … oh yeah, and enough hunger to even think about ingesting it. Does that paint a little bit of a picture for you?
So even if we kill all of this cancer, if this appetite thing doesn’t change, I won’t survive much longer. Now that I’m on Medicare, they will not pay for TPN unless I have failed … that means had it put in, and used it till it no longer worked or it was evident the desired effect was not happening … both a nasogastric tube (tube down nose into stomach) and a feeding tube (tube directly into stomach). Let me tell you, a year ago, I had an NG tube for three weeks. I couldn’t take one more day. By that point, it was excruciating and quality of life? Non existent. You can’t go out in public without frightening everyone because you have this tube hanging out your nose like elephant man or something. And it is uncomfortable as hell even to talk. So thanks to the government insurance rules, I can go from having a decent quality to what is left of my life, to having hardly any life at all, in the course of a half hour. (And we think government-run health care is a good idea? No one asked us disabled folks or veterans and we are the ones already under that system. OK political rant over.)
When I left Colorado, I didn’t have a belly full of fluid. I had a head full of hair … looked like a plush toy, but it was a full head of hair. Now I’m carrying probably six pounds of fluid and I’ve lost so much hair I had to shave my head this morning. I think that was the last time I’ll ever see my hair. It takes so long to grow back in, and even when it does, it takes a couple of years to return to its normal texture. I have no reason to think I will be here that long. We are out of money and, in the past nine weeks, I have had five different chemo drugs. What else is available for me?
Well, I can go home all bald and full of fluid and have a liver biopsy to try to ascertain my ER/PR and Her2neu status. Then I could try whatever chemo drugs I haven’t yet tried, but they’re brutal. What with the full chemo I had last year, and the five I’ve had recently, that is six chemos in the past year … and though last year I almost achieved remission, I still couldn’t eat. So if we put me into a sustainable remission, how long could I survive without eating more than 700-800 calories a day? Because that’s about all I can consume on my own.
I had also had a spike in my urine alkalinity last week, which was a major miracle as well. I have not been able to get, and stay, alkaline the whole five years I’ve been trying to get and stay there. Last week, I tested at 7.0 which was the best I’ve seen in me without drinking baking soda in water, which isn’t the best thing for you. But not this week. I’m back to being acidic again … even with all the oxidative therapy I’m getting, and they should be alkalizing the crap out of me.
Given both of these things: the continued lack of appetite and acidity, I just don’t know that anything will change the course of this path. Have requested a meeting of the minds with Progressive’s two NDs to reassess where we are and where we are headed. I just don’t know that they have any other tricks up their sleeve where I’m concerned, so though I’m not ready to die yet, I seem to be out of options … especially since we are out of money as well. Running out of hope here. Sorry for the downer of a post, but hey, y’all are along for the ride … and this is part of it.
Now you can get a glimpse of the woman behind the curtain. Everyone says I’m such an inspiration, so strong, so courageous …. nuh uh. I’m really just not ready to leave the ones I love, and not ready to go through that unknown process of dying. The little experience I have had it it was quite traumatic, and not one I am anxious to repeat. Now you can see that I’m no different than anyone else. When faced with my own mortality … when my back is really in the corner … I crumple like a well-worn dollar bill. So I just try to get through this weekend and hope I can get some time with both of those doctors on Monday which, as busy as that place is, will be miraculous in and of itself.