May 26, 2011

Officially Cancer Free - Life is Good!

I simply do not know what to say or even what to think, for that matter -- I am cancer free.  Such a short simple four word sentence.  Yet there is not a football coliseum big enough to contain all that those words represent to me in past history and future that can now unfold.

This morning I retraced my steps from home to the Cancer Center to have a PET Scan of my full body.  Last September, the same technicians and nurses did a scan of my body using this exact same test in the same room with the same huge test apparatus. They determined officially that I had cancer in the base of my tongue that had spread to lymph nodes on the right side of my neck---a lot of them.  Now, 246 days later....Yes, it has been THAT long....with all sorts of thoughts racing through my mind, I re-enter this area of the Hospital complex to discover if I was going to have to once again face the horrors of chemo and radiation treatments.

For weeks, every little ache or pain or flinch somewhere in my body was scored in my brain as a possible indication that the cancer was creeping back.  Only the PET Scan today would settle, once and for all, the big lingering question of my life, "Am I cancer free?"

Of course, they had to totally knock me out again just like the first round of testing months earlier.  Once again, I had understanding and compassionate technicians, nurses, and a great doctor easing me down onto my back in front of the scan machine open mouth entrance.  I few moments of prep and the the doc said to relax....and I was gone until they woke me up to stumble under their assistance to do an hour or two in a recovery room so the La La juice could wear off. 

The results of the body scan had be closely analyzed by the docs so I was sent home to sleep off the effects of the test.   And sleep I did because I had closed my eyes for only a few moments of fretful sleep last night as memories of so much of my cancer treatment rigors crept in and out of my thoughts. Those nightmarish memories more than once made me break out into cold sweats as I lay in the dark trying to will the first streaks of daylight to sneak into the trees outside to signal it was time to go for my test.

I called Doc Q's office a few times during the afternoon to see if the test had been sent over yet without being able to get any news....good or bad.  Finally, about 6P I got the call.  I held my breath as Doc Q's Physician's Assistant told me the test showed I was cancer free.  She said it again and finally asked if I was there because I had not responded.  I was just too choked up to speak as the tears exploded from my eyes. I thanked her from the fabulous news.  I then asked her to please tell Doc Q and Nurse Mary that I loved them as well as her for walling with me through all the horrors of my battle with cancer.  I guess patients do not show that kind of gratitude.....I can not imagine why!....because she was clearly happy to hear this sort of affection and appreciation from me. 

I sat for a few minutes by myself and regained my composure before going to find Lieska.  The dam broke again, though, before I could get the full "The test results came back and I am cancer free."  After some much needed and long awaited hugs and kisses saved for this moment, we went down the hall to give the news to my mother who has suffered so much anguish throughout my battle with the cancer.

And now it is time to pass the news on to all of you....literally thousands of fantastic friends and relatives who have pushed, pulled and prayed me through the biggest adventure of my life.  As I said at the very beginning of this, my motto "True Adventure Requires and Uncertain Outcome" was made just for this period of my life....and how!

Thank you for all you have given of yourself so I can live today.  I will keep you informed of my sloooooow but sure recovery progress.  Hugs and kiss for all....even those ugly Ham Radio buddies.

May 2, 2011

Progress continues!

It has been far far too long since I have updated this blog.  I really do not have an excuse except to say that I have been so absorbed in trying to find myself after the cancer treatment, I just could not come to terms with what I should say here.  All of you that have been connected to me for so many months have seen inside me in ways no one before you had access.  While I was able, I shared thoughts with you I normally would never let leave my mind.  I needed to say some things but wasn’t ready to say them…
Today when I go back and read my own words and those of my brother Larry and my sister-in-law Sue, I become very emotional.  The words bring back memories that today I find too hard believe were actual thoughts and events in my life.  The trauma of the entire treatment process was so intense, it fell in that category of terror that the human mind often bottles up and locks away.  Interesting, as I now go through the recovery from the treatment, I find bits and pieces of my thoughts from those terrible days and nights suddenly pop into my mind; thoughts I cannot initially recall having.  Some of these memories are so vividly full of the pain and despair I was going though, I have to escape to a private place to let the “feelings” come so maybe they will return to wherever they will reside for the rest of my life…hopefully in a deep deep part of my mind.
The most alarming and sad memory that has surfaced is a week long period in the final days of the radiation treatment.  It was during this time that I suddenly refused to go forth with the final days of my radiation treatment.  I simply could not do it even though I had only nine more days to go.  What no one knew was that inside me, I had decided I wanted to die and was struggling to will my body to die.  Those thoughts occurred at a time that easily was the lowest of my entire life.  Never had I been so emotional, mentally and physically drained with absolutely nothing left to carry on with.  Actually, I did not want to die…I love life and have lived it that way.  But, for the first time, I was at the wall and could not take the pain and fight any longer.  I was ashamed to feel this defeat and could not pull myself up from it. 
It was only the struggle of my wife Lieska, Nurse Mary and Doc Q that defeated my own personal mission to make my body die and give me the release I was seeking.  They would not let me go and each day for most of that week did everything possible to not let me go….all the time not knowing I was not in the fight with them although I think there was some suspicion on part of Nurse Mary.  Eventually, their efforts made my body feel well enough that I decided to see if I could go back and do those last nine terrifying sessions inside the radiation equipment.  The memories of those last nine day are  beyond words…I have no idea how I overcame the terror that owned me each morning just before I “committed” to lay down and let them put that mask on my head to lock me to the table and put me in the radiation machine.  The drugs just could not sedate me any longer. There is  no doubt in my mind that only an act of God that I was somehow able to get through each of those final nine days…
I recall during this time thinking of all the people that had sent me emails and cards and how sad I was that I was going to die without being able to say Thank You and a final Goodbye.  I remember lots of tears from that sadness.  I give all those people credit for also being a factor for pulling me through this very dangerous time.  Thank you all for your thousands of message of encouragement and best wishes for beating the cancer.
I wish I did not have to share the above words with you. I would prefer to be the big brave tough guy so many of you wanted me to be through this.  I tried but didn’t quite make it and did not measure up to my or your expectations.  But, from the beginning of this blog it has been my intentions to share the good, the bad and the ugly of this whole thing, no matter what the ultimate outcome.  So, memories of this moment had to be told…I was too far gone and away from real life commitments at the time to fulfill my responsibility to all of you and share the intent to die with you.
Today, two months after the last treatment, I am alive and trying hard to get well.  I am pushing myself as hard as I can to get my act back together and get on with life….mainly so I can discover who I am after the six months of hell.  I truly do not know.  I am certain my views on some things have changed but those changes are not clear to me yet.  I find I am still stumbling along day to day.  I try to do things I used to do and discover that many times my mind and/or body simply are not ready.  The realization of this fact frequently sends me into short rages of frustration.  I never had been a patient person; that fact is easily to witness as I push to find some normalcy in my life. 
I know also that the stress of not yet been totally convinced that the cancer is gone heavily eats away at me.  Apparently, I am about to get what I need for final confirmation one way or the other. I believe the docs are about ready to do a very special CAT Scan and a PET full body scan to search for any traces of cancer in me.  I probably will not find peace until these tests are complete with the results I pray for.

A quick summary of how I am doing today:
I go to physical therapy three days a week to rebuild my right shoulder and right arm.  My range of motion has some small improvement. Doc Y tells me that over the next six months he will be able to restore most of the range of motion to this arm but never all of it…just not physically possible for a handful of reasons.  However, I will once again be able to reach out and reach up to a kitchen cabinet to get a coffee cup.  I’ll take that.
My hands and wrists are quite weak and I am constantly dropping things.  Only time will fix this as the muscles rebuild.  Same goes for the legs, back and other muscles that turned to mush during the months and months of inactivity.
I stutter and stammer a bit as my mind and my mouth try to connect up again.  It’s frustrating to not be able to get out what I am thinking but apparently this is normal at this stage of recovery.
I still take most of my nourishment through the stomach G tube.  I am able to eat most soups now, though. Occasionally, I am able to eat some solid things in small quantities like eggs, a bite of bacon, a few bites of apple, etc. However, most solids still taste like chewing cardboard.  And, this too, is apparently about where I am supposed to be at this stage of recovery.
I am going to try and do some work at my office starting this week.  I am certain it will not be a regular thing but I want to start trying. Do my fellow employees a favor and pray for them…
So, I am making progress.  Its going too damn slow for me but that fact alone means I am getting better!