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 out...talk 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...

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.

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 wall....as though that would help...in 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 God....is the cancer still there or have we been successful....

Light at the End of the Tunnel

Sue, sister-in-law of Dennis, sending an update from Irvine

Friday morning I accompanied Dennis & Lieska for his weekly visit to the social worker, N, at the Hoag Cancer Center who has served as an invaluable counselor and advocate throughout his treatment. The antibiotics had started working so he was feeling better physically than he had earlier in the week. However, he was at a low point emotionally, and he was very unhappy with certain radiation treatment logistics. I listened with a sinking heart as he told N that he was ready to quit treatment altogether if certain things could not be arranged to his satisfaction. He was so fed up that he felt ready to walk away and just let things run their course.

My observation: Dennis had been hanging in there while treatments went as scheduled, even though they were brutal. But when the infection derailed the plan he felt he had lost control of things and he went into a downward spiral in attitude.

N volunteered to contact the radiologist about his concerns. Then she reminded him of something we all “know” but often don’t fully comprehend – namely that the only thing in life we can actually control is our response to things. She challenged him to spend time over the weekend relaxing, enjoying the break from treatment, and contemplating his responses to the uncontrollable events swirling around him. N gave him a way to reevaluate and gently “whupped his ass.” (I’m quoting Dennis here…) He needed it.

Dennis had a quiet weekend. No doctor appointments, not even hydration, so he had plenty of time to rest and think. And the antibiotics continued working…so he continued to feel better.
Monday morning was an appointment with Dr. Q, his oncologist. She looked him over and asked some questions about how he was feeling physically, and she literally danced a little jig to express how pleased she was with his state of health at this point. The infection was really cleared up, and she recommended restarting radiation immediately, as in that afternoon directly after hydration. She stated that she would schedule his final chemotherapy session for Thursday. Dennis looked to me to ask the questions we had written down (although he can speak sometimes, it is a great effort and he pays a price).

• Can this radiation logistic be arranged to fit my needs?
• Can the final chemo be eliminated or done at a reduced dosage?
• If I choose to discontinue treatment at this time, how will that affect my prognosis?

Dr. Q left the room to call radiology personally to verify logistics. She said Dennis was in charge of deciding to have the final chemo or not, explaining that its purpose is not to kill the cancer cells directly. If you recall, after radiation began, the chemo treatments changed from three drugs to one. This single drug works to radio-sensitize the cancer cells so that the radiation targets them and kills them more efficiently. She advised that for the best result he should have the final chemo, but that it would be OK to reduce the dosage. I held my breath waiting for his answer: “OK, let’s do it.”

Lieska stayed with Dennis during hydration (which included the final dose of antibiotics as well as an antiviral to help with mouth and tongue sores) while I drove home to pick up his anxiety medication to help him tolerate the radiation. We made the drive from the doctor’s office to Hoag Cancer Center with no time to spare.

Enroute my daughter called to see how things were going. She was surprised and delighted to hear that he was going to have a radiation session in about five minutes. I’m sure you all join in her message: “Go kick some cancer booty, Uncle Dennis!”

And now just 8 more radiation treatments to go…

Infection

Larry, brother of Dennis, here again


I wanted to share that yesterday my wife Sue caught a plane back to California. She is going to give Lieska, Dennis' wife, a hand for a few days.

Dennis has some kind of infection that resulted in high fevers. As a result of this the doctors put a halt to the radiation therapy. This was pretty disappointing to all of us as he was getting so close to the end of those treatments.

Sue was at the doctors with Dennis moments ago and called me with this information. He is getting intravenous antibiotics along with his hydration. Today the antibiotics began to take effect and his temperature has started to come down. In a few days things should be under control again. Then the docs will meet and we should hear what happens next and most importantly, what remains to wrap these radiation treatments up. Expect another update shortly. We will let you know what they have to say.

And thanks for all your kind thoughts and words of encouragement. I know Dennis really appreciates them.