March 12, 2011

Progress...but sloooooow

After a few weeks now in the recovery mode, it is very clear that this is going to be a really slow process...sigh.  Its so slow that I cannot even feel the progress but others tell me they can see...and hear...the progress.

Doc S, my infection doc, has had me on antibiotics to fight the nasty secretions in my mouth and throat.  I guess maybe that is where the most progress has been made.  I can now talk for long periods of time before the yuck collects thick and nasty again.  And I can now get a longer period of sleep without being startled awake drowning in the secretions.  I appreciate those longer sleep periods a great deal. 

I take some long walks evening after the sun goes down; I still have to stay out of the sunlight if possible. These walks started short but I try and stretch them out a bit longer whenever it feels right.  I remain utterly shocked at how weak all my muscles are. I now have a better appreciation why they are telling me this is going to be a 6-9 month process.

I have tried taking some real food.  I have tried a little cream chicken, chicken noodle and potato soap.  Unfortunately, it did not go well.  My taste buds are still totally whacked out making everything taste terrible.  The good news is I was able to get some of those soaps down my throat.  Oh, I was very much aware that my throat was far from normal but at least what little pain I felt was bearable.  So, that is progress! 

I think I am beginning to settle in with the idea with what should have been a no-brainer from the very start of this recovery.  I am not going anywhere like back to work, visiting, going to work a show, etc. until I can eat regular food again.  I cannot be at one of those place and just stop every 3 hours, pull up my shirt, reach in and grab my stomach feeding tube, stick in a funnel, pop open a can of liquid food and pour in some chow.  I have found that doing the stomach feeding tube thing freaks people out!  I have had to do it when getting a Big Day of chemo infusion and while at the hospital getting a dose of meds and hydration.  Not all cancer patients have to have one of these and their eyes pop out when they see that.  Hell, it freaks ME about an unnatural thing! 

Since having the surgery putting that G-tube into my stomach in October, I have poured over 530 cans of liquid nourishment into my stomach.  Now that I do the math, my head spins thinking about all those feedings! Those feedings have been the only source of nourishment for months; it has kept me alive without anything going in through my mouth.  Amazing.  I haven't lost much weight and still have a tire wrapped around my waist!  I never ever would have dreamed that a person could survive by drinking a liquid.  I am glad that I listened to my doctor and had the G-tube surgery.  I cannot imagine having survived this long through those long periods of time without being able to pass anything down my throat.  I have seen several other cancer patients who could not make themselves agree to the G-tube.  The scary evidence of that decision vividly shows the struggle they have staying alive.

So, I guess in simple terms I am going to literally have to learn how to eat again.  Until that is done, I am not sure what I can do as far as being "normal."  But, I am for sure thinking about it.  I am getting more involved at work via email and trying to help out.  I am planing a radio trip in June to one of the islands off the California coast with a friend from Las Vegas.  We will ride out there about a motor yacht owned by yet another friend and operate off the boat for a few days.  Of course, the North Carolina place is on my mind all the time...someday...someday.

So, it is good to be alive and make some progress even if it is sloooooow. :)

I have been so touched by all the messages and mail I have received.  I never would have thought that this blog would be viewed nearly 15,000 times!  I hope that I can bring good news after the full body scan and with steady progress with my recovery.  I think I am still having a great deal of difficulty believing that the cancer is gone and that I am going to live.  I WANT to believe but until that body scan I am more pretending that I let on to my wife and mother here at the house.  Maybe that is why I do not feel totally "engaged" in my recovery yet. I'll have o work on that...