Still alive, maybe not for long

So, I lie here and choose – Do I want a few more months with my family?  Or do I buy a lottery ticket that either takes those months away or makes them longer?  What would you do?  My family is pushing for the lottery.  I just dont know.

I'm still alive and mildly kicking.  Had the flu all week in our house.  First the baby for it three days, then I had it for three days, and then it spread throughout the family and home.  Then I had another PET/CAT scan on Friday, right at the end of my flu run.  I had to drink that nasty barium swallow and they gave me dye for the first time.  I didn't get dye or barium before due to my allergies.  Those items just set off the flu symptoms again.  I spent the entire night puking and with diarrhea.  The whole weekend I was so weak.  I am still suffering from stomach cramps, lack of appetite and weakness today.

I have another doctor appointment today.  I dread going.  I really don't want to know the results anymore.  It’s always bad news.  I’ve had enough of that.  The results are setting me up for surgery with a doctor who is not as experienced in this type of surgery, at a regular hospital, rather than an experienced Esophageal Care Center.  The chances of survival are much, much lower if not completed at an Esophageal Center by a doctor very experienced in the surgery.  They are scheduling me here with the much less experienced doctor.  My survival rate for surgery here in Nevada is probably 5-9%, but at an Esophageal Center, I could have as much as 25% if it’s a good center.  You usually choose the surgery to be completed at the best center.  I don’t have that opton.

So, it's a roll of the dice, almost literally.  With no further treatment, they figure I will die before January.  With just chemo, it gets real iffy because the chemo makes me so sick.  With chemo, if successful, I might have another six months or I may have a heart attack from low potassium problems.  Within the next couple weeks, months, the tumor will invade my lung wall further and make breathing difficult.  It's already difficult to lie down and sleep, because it makes me cough mildly all night and also the stomach acid rolls up in my throat and tries to drown me.  The acid also burns horribly when it gets in the throat.  I will probably survive the surgery day itself, but it’s likely the surgery aftermath of leakage and infection will kill me within two to four weeks after the surgery.  So here are my only options:  (1)  No surgery, but maybe chemo, and I get to live until Christmas or maybe a month or two more, or maybe die instantly of a heart attack from the chemo side effects.  (2)  Or, submit to the surgery and possibly die during the surgery (3) Or have them open me up and close me immediately during surgery saying the tumor is too difficult to remove and spend my last weeks recovering from my body being opened from neck to hip, (4) Or survive the surgery, but spend my last few weeks in the hospital dying from infections and/or leakage around the stitching, (5) Or, get very, very luck and survive the surgery, survive the recovery and actually hit the less than 16% who live another 2-5 years, maybe before the cancer spreads again and kills me.  So, I’m rolling the dice for 4-6 months of life, 4-6 months of life with several months of puking, instant death within a week or two, slow agonizing death within a few weeks, or hit the lottery and live a couple more years.      

The only sunshine on the horizon has been my Patient Advocate.  She has worked so hard calling my doctors and everyone, hospitals all over, every place she can think of. I assisted, sick as I am at times, and tired as I am.  I am sooooo tired.  I sent out almost one hundred letters to organizations, groups, Esophageal Hospitals, doctors, and more begging for the donation of the surgery at a real Esophageal Center.  But my Patient Advocate is also on her last options.  She is currently in contact with UCLA, a last hope, but it’s not looking good.  They have already turned me down personally, so I’m expecting that she will get the same answer.

Can you believe this?  One of the responses suggested I obtain residency in their state to qualify for the surgery.  Residency was six months.  In the meantime, I would receive absolutely no medical care.   I told them I had only a few months to live without the surgery.  They told me it was worth a try.  Numbnuts!