It’s been quite some time since I’ve checked in. I figured by now most would be sick of my “story” but I’ve had many tell me I need to send the “final journal”. I’ll do the “random thoughts” format.
My great friend Jon Kelly was on his way home from a business trip in Alabama and he offered to stop in Houston to pick up Robin, Gizmo and I and bring us home. It was a day I never thought would happen; in fact I couldn’t even imagine it. When I saw Jon, I hugged him and couldn’t let go. I was overcome with gratitude and emotion. The plane ride home was great but physically I was tapped out. It was starting to dawn on me – how beat up I really was. Just the energy it took to get the car packed (Robin did 99% of it!) and getting to the airport and the excitement of it all really took its toll on me.
Getting home was one of the most wonderful moments of my life but it had to be balanced by the doctors telling me that the next two weeks may be the worst of all my time in treatment. The radiation and chemo were still working on me I was warned. As usual they were right.
Two days after I got home, I celebrated my “24th year of sobriety” birthday. I had purposely told my friends I was coming home after that so I could surprise them at my recovery meeting on my birthday. For the few weeks prior to coming home, I was starting to realize that my appearance had changed dramatically. In my alone times I would look in the mirror and not even recognize myself. Very, very thin and gaunt looking but also no “life” in my eyes. They were right when they said “we are going to beat you up pretty bad”. I guess I thought I was different, I wasn’t. I told a friend I would meet him at a Starbucks for coffee before the meeting. We embraced rather emotionally in the parking lot and walked maybe 10 yards to have a seat to wait for them to open. After chatting briefly, he looked me in the eyes and said “are you alright”? I replied back “F no I’m not alright, I’ve had my ass kicked”. He noticed I had a hard time walking and that I wasn’t myself. When I walked into the meeting, no one recognized me. I had people tell me later that I had changed so much that I was “unrecognizable”. I guess because I spent every day for 6 weeks at the proton radiation center, I was surrounded by people who looked just like me. We were all beat up, burned and gaunt looking. The “wake up calls” were just beginning….
I was in emotional heaven being home and finished with treatment but my body was not sharing that elation. There was a huge disparity between my emotions and my body. I had zero strength and stamina…..zero.
Right on cue my throat got much worse in the first week. It made getting any nourishment in me difficult and painful. Still on the “soup diet” but would have to take a very strong pain pill just so I could swallow. I decided I would try and walk a mile a day and after a half mile, I would be totally tapped out and when I got home I would sleep for 2-4 hours. As the days passed and eating became more difficult I started losing weight at an alarming rate. I was quite concerned over my overall health, I was so happy to be home but I feared I may not be in the best place for me. I was “officially down”, not depressed (I know what that is) but very concerned about my well-being. I was lying about my weight to Robin because I didn’t want to go on a feeding tube. I remember how tapped out I felt when they put me on the IV at MDA and I wasn’t there yet but was on my way. What was worse was that I was starting to lose my spirit and resolve. I was starting to lose the battle I couldn’t afford to lose….the battle with me. I realized I needed a change of attitude. I talked to Robin and a couple friends that I knew would tell me what I need to hear, not what I want to hear.
I realized that I was still in “treatment”, in fact I may be like this for 6-12 months. I had everything in my life in order other than my throat and my strength. The latter was going to take time, just like I was told it would. I decided to “accept” my situation and embrace it each and every day. I started listening to my body and finding more soups that had more calories etc. I made a decision to look forward to each and every can of soup. With each sip of soup I have to wash it down with a swig of water to wash away any salt or spice that burns my throat. I’ve totally accepted where I’m at with this. It’s a decision, either feel sorry for yourself or tell yourself how lucky you are to be able to feed yourself this way. I now am having wonderful and fulfilling days.
I’ve gone back to teaching a couple hours a day, 3 or 4 days a week. Right now 2 hours is perfect, can feel myself getting fatigued and realize I can’t push this. I’m on the mend. I couldn’t say that for the last 4 months, now it’s reality. I’m not mending as fast as I’d like but I am better. Everyone tells me I look totally different than I did a month ago. I feel much better than a month ago!! I have many wonderful days and an occasional low energy day and those days I rest. My throat is off and on but I have another weird issue. My upper denture doesn’t fit anymore so I don’t have upper teeth. Hopefully will have that all fixed next week so I can chew because I think I’m ready for some different foods as long as I can chew! It’s why I’ve grown the facial hair so it’s not as obvious when I go out in public! I do warn my students about my appearance and no one cares.
So…..I’m getting better little by little. I was told about the nausea and what to expect but didn’t fully comprehend how weak I was, I get it now. I’m not well yet and it’s going to take months before I get functional again. We reopen in November and my goal is to work half days, five days a week. I’m going back to MDA October 31-November 2 for a few days of testing and checkups. I will feel a lot better after that if all the tests come back negative. Until then, I have a healthy respect for the possibility that things won’t be perfect. I think one has to stay prepared.
I’m very optimistic about how things are going and have totally accepted where I’m at and I will get to the other side of this!!
As always, Robin and I are so grateful for everyone’s support. It would have been so much harder without you. I hope that this will be my last journal and I can resume a life that puts me into personal contact with you all so I can thank you for your support in person!
NBC golf analyst Mark Rolfing was at MDA for a checkup. He was treated at MDA last year for a head/neck issue and also had proton treatment. He showed up on my last day of treatment! He was one of “my go to guys” to help guide me thru the highs and lows of treatment. His help was not quantifiable, very grateful for his support. You will also start seeing Mark in commercials for MDA on TV.
My last time strapped down to the infamous mask. Hope I never have to see that SOB again!!
What’s left of me, back at work! I can’t find clothes small enough for me. The shorts waist size is 3 inches smaller than usual and I’m still swimming in them!