September 25th, 2018

domo costume

Tomorrow we'll discover what our God in heaven has in store...

There can be no darker or more devastating tragedy than the death of man's faith in himself and in his power to direct his future.

-Saul Alinsky

It's going to be a full day tomorrow. Before we were able to get some things rescheduled, mom had jury duty, grandma had a followup with the audiologist, I finally get the results back from the kidney biopsy and dad goes to the medical oncologist. In addition all the kids, with the exception of Katie, have school and/or therapy. It hasn't exactly been smooth sailing around here and I'll admit there's more than a little dread and expectation of disaster. Dad's cancer has returned and metastisized from his liver to his lungs and adrenals. The surgeon who had removed half his liver previously says things are pretty much too extensive now for any form of ablation, even using things like radio frequencies. He won't say how long life expectancy is, but that's a pretty poor sign in and of itself. This was the same guy who was willing to push forward with the previous surgery despite the fact that 2 other doctors had disagreed and had even proclaimed that he thought 10 years plus was a possible outcome. The fact that he won't even go so far as to make a guess now means that it's probably dismal.

Shelley has tried to do some research into drug treatments and clinical trials. She had tried to get in touch with Raymond since he's a MD and ask for his input, but he was pretty worthless. All he had to contribute was the name of the standard anti-liver cancer drug that anyone could find with the most casual google search on the topic. Shelley was able to find 2-3 clinical trials that apparently show promise in both New York and Pennsylvannia, and the best part is both drugs require that you've had no previous drug treatments for cancer so as not to muddy results. The articles about the new drugs she printed out seemed to be promising, but there are God only knows how many hurdles left in the darkness to make it over before getting into those trials are even a possibility. She's going to go with Dad to the medical oncologist and I guess we'll have a better idea of what the path will be tomorrow.

Tomorrow I'll also find out what the results of the kidney biopsy are. As I was telling Bill S at this past gameday, the only two options I have are bad and worse. There's no chance for anything resembling a 'good' result here. That ship has sailed who knows how many years ago and I never even knew it was gone. At this point, all that's left to find out is if I slide into kidney failure and end up going on dialysis within the near future or it's even worse and I potentially drop dead in a couple years instead of a decade. On the up side, when you know your only options are shitty and super shitty, at least you don't have to deal with the glimmer of false hope and inevitable disapointment.

I was reading a website last night about how some people with kidney failure just decide they'll refuse to go on dialysis. They figure the costs to their quality of life aren't worth the life extension. They'll try to hold on to what kidney function is left, but just slide into the darkness rather than raging against the dying of the light. It's something to think about and it's not like any decisions have to be made anytime soon. In a way it's a far luckier choice than dad may be forced into making one day soon. From everything I've read, kidney failure just seems to involve weakness and lethargy. At worst you might get a bit derranged due to to the build up of toxins, but it's unlikely to be something that brings a lot of pain or discomfort. I guess that's something at least. Small blessings.
domo costume

Waiting for the other shoe to drop

Sharing bad news with strangers is most certainly a selfish act.
-Mike Gallagher

Dad and Shelley just got back from the oncologist. There's a choice of trying an already approved drug treatment or trying to enroll in a clinical trial. The prognosis without any treatment is only a handful of months. Maybe 4-6.

The FDA approved drug could perhaps extend that to 9 months and of course the doctor trotted out the anecdote of one 90 year old cancer patient of hers who had lasted 5 years. I figure that's an empty hope in this place. Sort of like rowing out into the ocean in a leaky canoe during a hurricane and hoping that Jonah's whale will give you a lift because it happened once before.

There's no telling about the clinical trial, whether it'll have any efficacy at all. They only accept patients who have had no previous treatment. If the scans still look terrible in 3 months we could always switch on to the standard drug treatment but it'll have wasted time.

I'll be heading off to the nephrologist in a hour and we'll see just how bad things get.
domo costume

And there's the other shoe, right on schedule....

'Every thought is a battle, every breath is a war, and I don't think I'm winning anymore.'

Well, the kidney biopsy report was pretty unequivocal. It was filled with all sorts of medical jargon but I can pretty much sum it up in picture form.

The nephrologist thinks that I'll be in full kidney failure within a year. GFR is continuing to drop and at this point dialysis is inevitable. There doesn't seem to be any treatments or interventions she's willing to prescribe, so it's just twiddle my thumbs and wait for the end. She said that at this point I'm under the 20 GFR cutoff for getting an evaluation to see if being added to the transplant list is even a possibility. Considering that the wait time is 3-5 years on average, the odds are pretty non-existant that the kidney will last that long. It turns out that if you do go on dialysis, the chances of a good outcome drops, and continues to fall the longer you stay on dialysis. Almost all of the kidneys that do become available are post mortem which also makes the outcomes more problematic. I guess either way it's a race against the devil. There's always a chance for a living donor, but if you don't match with family it's probably a fool's errand.

I mean, just look at this....

This man is using a Times Square billboard to find a kidney donor

If this is the lengths that people are going to and only wrangle up 8 potential volunteers, it's just this side of pointless. The odds that a stranger will match is around 1 in 100,000. You have a 100x better chance of dying in a house fire within the next year or are twice as likely to be attacked by a shark.


Is all of this even really worth it? It's not like I was really doing anything all that valuable with this life and it's been a rocky past 20 years or so. To go through this whole process now is hardly an appealing choice. It's sort of amazing looking back on all the surgeries, the pain, the suffering to end up at this point and still find out that the light at the end of the tunnel was just the oncoming train. I'm all of a sudden reminded of that old adage....

'Death is just Nature's way of telling you to slow down.'