Friday, May 30, 2014

Less than 3 weeks

Ok now.... things are moving forward. Pre op exam on Tues. June 3rd, fistula and port surgery June 6th, and of course, kidneys out on June 18th.

I have been studying up for the changes that are coming..... dialysis takes only 3-4 hours a session, not the 7 hours that I thought. It seems that modern technology has reduced the time necessary to filter the blood, and draw off the excess liquid.

I will be going to a dialysis center for a couple of months because my fistula will not be ready for use until then, and only trained professionals are permitted to mess with the port. Apparently, it goes directly to the heart to accommodate the volume of blood necessary for dialysis, and an infection could be fatal.

Home dialysis will be available and will consist of  3 hour sessions, 6 days a week. The one day off every week appears to be for convenience, and doesn't have to be the same day every week. I am supposing that diet and liquid intake will be extra strict on the non dialysis day.  Anyway, the process is fairly sophisticated, requiring a 70 lb. machine sitting on a base that contains a large reservoir for the liquid,  a filter, and 6-8 gallons of liquid per session. The machine mixes its own liquid with help of about a gallon of dry chemicals. Chemicals and filters are delivered once a month, and the machine itself is connected to a water supply and a drain.

Dialysis must be done with a trained partner in the room due to the danger of passing out, followed by death. I expect I will learn more about this during the 3 weeks of home dialysis training.

All of this appears daunting, and very intrusive..... a huge imposition into ones life. But dialysis is really the easy part. The hard part is the DIET..... Just a few examples, no red meat, no potatoes, no milk, no tomatoes, no doritos, no ice cream, no pizza, no cheesecake, no nuts, nothing with salt ..... It goes on and on. One tiny glitter of light in the diet of darkness... NO BEANS of any kind. Add to this, severely restricted fluid intake, and your standard low sugar and low carbohydrate  diabetic diet. What is left is barely enough to sustain life. I suspect that it will be worse than cutting weight for wrestling. At least then there was always the week end binge to look forward to.

So I mention how bad this sounded to the dialysis class instructor..... Her response, “would you rather die” (I exaggerate slightly for effect).... clearly she had dealt with people like me many times before. So, I had to admit that she had a pretty powerful point. She also pointed out that there 101 countries where dialysis is only available to the rich. She went on and on, and finally I broke down and agreed that I was very lucky to be losing my kidneys, and was looking forward to the strict diet.

There will be regular blood tests to keep track of various chemical levels in the blood. The list of dire consequences, for cheating on the diet, is frightening to say the least.

Anyway, it is what I need to do, and I am hoping that my urge to live will overcome my lack of discipline, and the new diet will become a habit. I am also expecting major weight loss. In truth, I am very lucky that the technology exists to keep me alive.  Not too many years ago, I just would have gotten sick and died.
I am currently working on my” bucket list”. I plan to eat as much salty red meat, and drink as much milk as possible between now and the 18th. Toward that end, I took Karen out to lunch today at the best “meat” restaurant in town..... I had prime rib and a baked potato.... Today, life is good.

Monday, May 19, 2014

Next on the list of things to do

Ok now.... It has been almost 3 weeks since my last chemo, and I am feeling much better lately. I  still tire quickly, but things are getting better for sure.

On the agenda this week, dialysis class at the dialysis center on Wed, “vein mapping” with the vascular surgeon on Fri. Next week likely out patient surgery to create a fistula, and install a port. These are to facilitate dialysis, which will begin after my kidneys are removed on June 18th.

There is still no way to stage my cancer..... that will happen after the kidneys go to the pathology lab..... Stage 1, 89% chance to survive 5 years, stage 4, 16% chance to survive 5 years. Of course, hoping for a good report.

Another interesting statistic..... average life span of people going on to dialysis..... 4.5 years. Yikes, but not as bad as it sounds. That stat includes all of the people who lost kidney function due to other diseases that are ultimately terminal. I am not sure how much that affects the numbers.

It is said that everybodies cancer is different, and that “you are not a statistic”. Ok, but the numbers are real, and I notice that they bounce around in the back of my mind, and find their way into my daily decisions. I have noticed that I am giving things away, finally setting up that Living Trust, and generally just “getting my affaires in order”. Not really a conscious decision, just things that I notice.

I expect that this next  month will be the best that I will feel for a long time. I am not sure how one feels while on dialysis, but I am sure that you spend a fair amount of time with blood chemistry that is not optimal. I am hoping to minimize this issue by getting set up with “home hemo” dialysis. I know that it sounds slightly pornographic, but really is a home set up of the same system that they use at the dialysis center. The difference is that you get to dialyze  everyday, and probably spend more time in the “sweet spot” of blood chemistry. Additionally, you are able to drink more liquids, and eat a less restrictive diet. It is not for the squeamish though, as you are stabbing yourself with large needles, but I think that it is the healthiest way to survive dialysis.

I will have more details regarding all of this in the near future.

Friday, May 9, 2014

End of chemo

Well, chemo is over, at least for now. My last session, scheduled for last Tues, was canceled. I  woke up last Sun with a temp of 102, well past the 100.5 that should trigger a trip to the hospital. Karen made the calls, and took me to the hospital. Short story, I was there until Tues afternoon.... many drugs, fluids, and 2 pints of blood later, I was deemed to unhealthy for the last chemo infusion. Guess that they got tired of keeping me alive, only to make me deathly sick again.

It is not discernable what benefit the last infusion would be, but getting me healthy enough to survive kidney surgery was considered more important.

On Tues, I met with the surgeon (Dr. Daneshmand, USC Norris cancer hospital) who will remove my kidneys.... seemed like a good guy, and is one of the best in the world regarding kidney cancer. I consider myself fortunate that he is available. The surgery itself is similar to the bladder removal in its recovery period. Once again, it feels like I have signed up for a train wreck.  #5 open abdominal surgery, should have put in a zipper.

The next agenda item is a fistula (needed for dialysis), and a “port” to use while the fistula matures (1-3 months). This should happen in 2-3 weeks.

I am still tired and sick from the previous chemo. I will report more when some energy returns.