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!

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...

February 26, 2011

The Recovery Process Begins

Gee, maybe I am actually beginning to come out of the cancer treatment a tiny bit….finally.  My brain has been so dulled by all the pain, medication, etc.; I haven’t been able to remember how to even get into my blog to do a posting for a couple weeks. As I reflect back through the whole treatment period, I can recall such long periods of being a walking brain-dead body just trying to make it from one day on through the night to start the next day of the same routine of overall discomfort and disorientation. 
I am not sure I have the words to describe how slowly the treatment months have moved. Because I was feeding through the stomach tube the majority of the treatment months, I never truly got a good period of sleep – truly never.  I had to be awake every 3 hours to take in a can of the liquid food. Without a nice long 6 or 8 hour sleep inside each 24 hour period, the days seemed so long and slow. And really, the only thing, I had to look forward to was another day exactly like today….and usually today was a day I wish I never had had to live.   I think after weeks and weeks that have turned into months and months of this, I am going to have to learn how to live a traditional day. 
But, today I am far from ready to go back to a traditional day…..heck, I am not really sure I even remember what a traditional day feels like.  As promised by the doctors and nurses, the recovery healing process is going to go just as slow as the treatment period it appears.  But, the good news is that I have completed the treatment days and have officially moved into the recovery days now.
I have been told that for ever day my treatments took me downhill one notch, I will require one day of recovery.  I was not told that upfront when I started the treatment – it doesn’t really matter because there is no way I could have guessed what the treatment period would “feel” like.  Now that the recovery side of all this is here, my patience are truly being tested, though.  I so very much want to be able to start eating and drinking like a normal person, have my voice back, go to work, look forward to doing things, and once again believe my dreams for retirement and endless days of ham radio and other things I love to do.
I have a lot of recovering to do before any of that is going to happen.  Right now, my focus is on getting my mouth and throat back in use.  Even though the last radiation treatment was about 2 weeks ago, there is little improvement in my ability to speak.  But, now I do have a few brief periods where my mouth and throat are clear of the constant flow of thick “yuck” and I can have a short verbal exchange – usually not longer than 4 or 5 minutes.  It is hard to describe this endless flow of thick saliva-like material that my body dumps in my mouth and throat.  Apparently this stuff is all part of the healing of the damage done by the radiation to my mouth, neck and throat.  I often feel like I am going to drown in it.  I need to constantly work with the stuff, though or it gets thick or even dried out in my mouth.  So, I am constantly in the bathroom rinsing with a saline solution to clear it out.  Dealing with this plus the need to take in some liquid food via the stomach tube every 3 hours continues the lack of good sleep issue.
All of this is perfectly normal I am told.  Again, in other words, suck it up.  There are no short cuts in the recovery anymore than there were during the treatment.
At this point, the doctors say that I should no longer have any cancer.  However, the effects of the chemo and radiation therapy treatments will continue to work inside my body for some weeks more even without new treatment being given.  Therefore, the doctors will not do the actual PET full body scan to verify that all the cancer has been killed for 6-8 weeks.  After the full body scan, they will watch me closely with monthly check ups to ensure that the cancer does not come back.
The cancer treatment has to be brutal on the body, unfortunately, so I have some work to do to heal my body back to full health.   I must now work on these things:
Clear Thinking    I believe that I should have normal clear thinking back in about 2 weeks as the drugs leave my body.
Mental Health   I am now willing to admit that this whole experience has been far more traumatic for me than I ever expected.  I have some work to do to restore my confidence in me and to move forward with living life now with this cancer that has to be watch out for during my remaining days.
Voice                     My voice is mostly gone and I have a great deal of pain in the throat when I whisper or try to talk.  I believe I will have a voice again in about 2-3 weeks.
Right Arm            I lost a great deal of strength and range of motion of my right arm during the treatment.  I will have physical therapy to restore the arm to normal function
Eat Food              I have not eaten normal food for most of the last four months.  It will be another 2-3 weeks before I can start trying to swallow food again and slowly regain a normal food diet. 
Weight                 My weight loss was acceptable during the treatment.  Since I was a little (?) overweight when I started, I hope to only put about 15 pounds of weight back on.
Hair                        My hair is just now starting to slowly grow back and it is…in ugly little patches of varying lengths.  A quick trip to the barber next week will fix the length differences I hope!
Strength              My leg muscles as well as most other muscles have all become weak from lack of use.  I will be doing exercises to restore normal muscle tone.
There are probably a lot of words owed you to discuss some of the truly dark days in the final weeks of treatment when things were quite bleak for me.  I will search for words to best describe those days in my next post.

February 10, 2011

Getting fnal Chemo fill-up

Hi Everyone.  Yes it is actually me instead of my brother or sister-in-law.   I certainly am grateful for their willingness to post up some status over the last several weeks when all I was was up for was sleeping, whining, sleeping, stumbling and grunting noises that people around me are suppose to immediately understand and respond to.  These have been some very low times and saw me either throw the towel in at my worst and throw the towel at the though that would more humorous moments to observe.  I am all against this chemo infusion today fearing it will butt me on my butt again and keep me from being able to crawl up onto the radiation machine to get my final sessions.  That's all I live for these days.  Just get them done before they get me. Maybe sometime in the near future, I will be willing to discuss some of this dark period that has taken place over the last several weeks.  Now we are just down to the final decision from the cancer still there or have we been successful....