Everyone's life is full of 'when'. When will I get a better job? When will the kids finally move out? When will the kids move out again? When am I going to get recognized. Cancer adds a few more whens.
The biggest one and the one that everyone asks when first diagnosed is 'Will this kill me and, if so, when will I die?' When will I die? There are lots of places on the internet that will allow you to put in various thing like smoking habits, eating, weight, height and will give you an approximate life span based upon standard statistical tables. I occasionally take these polls for kicks and grins just to see what things would be like if I were cancer free and the surveys usually come out with a life span of around 80-85 years.
What is my real life span? It is very hard to say. I got a big fright this summer with the metastases to my right lung but that probably won't kill me. It is likely going to be my liver but that is simply the front runner of things that could be the end. Liver failure does not give any options. The only real cure for liver failure is a liver transplant and I am obviously not high on the list of potential candidates. There are still treatments we can use to address the mets in the liver but, eventually, there just is not much that can be done and that will be an end.
Of course, that is the time we hit the word of the day: When. Last time anyone gave an estimate (about 2 years ago), my liver was about 15% consumed with tumor. I have noticed an increase in carcinoid syndrome, particularly in flushing. This seems to imply that the liver involvement is increasing because those nasty little tumors are dumping their neuro-endocrines directly into my blood stream without the filtering of the kidney or liver. We can't get an estimate of tumor load from a CT scan because of my kidney failure but we may try to get an estimate either through a doppler ultrasound or a CT with contrast once my kidneys have completely failed and I am on dialysis.
Speaking of my kidneys, they will be failing sometime here in the near future but their failure won't lead directly to death. I will quickly start on dialysis and long term dialysis shouldn't be an issue. There will always be the continual low probability chance for infection but that should be manageable and not result in death.
My lungs are another potential critical point. It is likely my liver will go first but if my right lung ever got too critical, it can be removed and I can continue with just my left lung. People do get lung transplants but, again, I am not someone that would be on anyone's list of receiving a transplanted organ.
Another 'when' could come from the continual minor surgeries that I continue to receive. I have a bilateral ureteral stent swap about every 3-4 months. We have not had any issues with the anesthesia that we have been using but there is a possibility of my going into crisis and not recovering, leading to death.
Yet another bowel obstruction is another possibility. I have had 3 so far and if I were to live another 10 years, I would almost certainly have another. If I do obstruct and surgery is an option, a long surgery raises the specter of carcinoid crisis and simply the everyday normal complications of an extended and very involved abdominal surgery. If surgery is not an option, I will almost certainly go back on TPN again. TPN would significantly increase the probability of infection as the path of injection goes directly into my blood system.
What does this all mean? When is when? A study by Dr. Pommier shows that the removal of the primary tumor leads to greatly extended survival, primarily due to delayed onset of liver involvement. In that study, 16 out of 18 of the patients who did not have a primary tumor resected did not survive past 5 years. On the other hand, for those who had primary tumors resected (as I did), there was a 60% survival rate at 15 years. My relative youth also should be a bonus as I was 20 years younger than the average age at diagnosis in Dr. Pommier's study.
When? I don't know but I know it pretty much all depends on my liver as approximately 75% of those who died, died of liver failure. The end of October marks 13 years so I am happily moving into that 60% survival rate group. What I do know is that I will not squander what is remaining. I will not squander an hour doing things that do not matter, are not rewarding, are not fulfilling, or are not memorable. That doesn't mean I won't sit in meetings at work that are boring (there is a price to pay for the others).
What about you? When is when for you? Taking these surveys for my wife yields 90ish years. What time are you squandering or wasting? You never know when a drunk driver, a flash flood, hurricane, tornado, or some other situation far beyond your control will be your when. Enjoy your life and make sure that if your when were to come tomorrow, you will not regret your today.
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