Well…..today I had my first proton radiation treatment. I’m finally embarking on the journey that created so much fear and depression. I still am very apprehensive about the future side effects. I’ve heard all the possibilities, many times over. I realize that the next 3 months will be difficult. What I “fear” the most will be my reaction to these side effects. At the bare minimum, I will be dealing with substantial “skin burning” from the nose to the chest that will require constant maintenance, and the sore throat that will greatly compromise my ability to swallow, therefore drink and eat. Pretty sure there will be saliva issues and all kinds of mouth problems. I think they are a given. All the other side effects are unknowns to me but I don’t doubt for one second that it’s possible I’ll suffer from many of them. I accept this. What I’m not sure of is my pain tolerance, my ability to deal with waking up each day with not much to look forward to. How will I respond to the days when I feel down and beaten? I guess we will find out.
I have stayed “very present”, one appointment/one day at a time. I haven’t wavered one bit from that. Even today as I approached my first radiation treatment I looked at it as “one step closer”. I had a “healthy apprehension” for the procedure because it was all new to me, wasn’t sure what to expect. The proton treatment is done at a brand new facility and it is way nicer than the one at the hospital. Very modern and very bright. The waiting area is 100 times nicer than the place that set my depression spiraling down. It still has people there that are obviously suffering (I will be one of those soon) but it’s a much nicer place. When I was called to go into the treatment room, I would say my anxiety level on a scale from 1-10 was at the most a one. I have somehow convinced myself (so far) that I must go to each and every appointment with good intent, and realize that what I’m doing is absolutely necessary to my well-being and recovery. There are NO shortcuts and my responsibility is to stay focused and positive. I did not find the room intimidating and all the techs in the room were very accommodating.
Now it was time to lay down and have the mask put on. First you have to take your shirt off and for some reason (reason is I have zero tan, have been asked to gain weight and feel like a baby sperm whale!), I feel “violated”, I just don’t like it but most of what I’m asked to do I don’t like! I was told that they could give me a sedative if I were claustrophobic. I declined. As they started to put the mask on with the stent/mouthpiece, it was tighter than I remembered. The mouthpiece immobilizes the mouth and tongue in a manner that was very confining and a bit alarming. That freaked me a little because initially it was hard to breathe and swallow. You can’t breathe thru your mouth. I had to start breathing thru the nose and things calmed a bit. I could see if you were prone to being claustrophobic this could be awful. They immobilize you and then strap the mask down so you can’t move. It was all very new, a little uncomfortable but I found a rhythm with my breathing and started to settle down. This mask is tight! They ask you beforehand what kind of music you like, they have Pandora, so you give them a genre and pipe it into the room. I asked for the Moody Blues era! Here are the groups I heard while getting zapped! In this order Moody Blues/Simon Garfunkel/Crosby,Stills,Nash and Young/Beatles/Buffalo Springfield/Eric Clapton/Association/Moody Blues again and I was finished!! All in all it went very smooth and I at least know what to expect. Five days a week for 7 weeks. Easy huh? Maybe now but the hammer is coming. As they said at the seminar I went to in these exact words “we are going to beat you up pretty bad”. I will have to constantly work on my attitude and resolve, constantly.
Had a very good week leading up to today. Slept thru the night a few times, didn’t use sleeping pills, and had days with energy and was quite social. Even today had breakfast with a great friend who is here supporting his sister who has cancer and went out to dinner with another friend. Tonight I debuted my bald head for the first time in public. Guess it looked ok but still not used to it. Tuesday night we will have an early dinner at River Oaks CC; then go to the play “Wicked” with one of my late brother Dick’s best friends. He is also someone I’ve known for 30 years. Trying to do all these things while I can.
We have incredible support in Houston. Dick’s wife still lives here along with 3 of their four children. Because of all the years I’ve been coming here, I also have many friends who I met thru Dick.
All of Dick’s children have his sense of humor! They are all very funny and invariably we spend most of the time laughing when we are together. It’s just what I need and I love being around them. I went to Sam Houston Race Track with Chris Harmon on Saturday and just had the best time. It is not lost on me that I was with their dad when he suddenly passed in the desert in 2006. I had to be “the rock” for a few days and now 10 years later, fate puts me in their love and hands. One of those rare moments in life when “the circle reconnects”. Very, very grateful to have them supporting us thru our 3 months here.
We have acclimated quite nicely. The other night we went to an Astros game with a couple of friends and Robin referred to them as “our Astros”! We are comfortable here.
Robin went home last week for 4 days to take care of some clients and to help our son Jay find an apartment in LA where he has enrolled in a film school. She had a very successful trip in every way. Her business trip was successful and she has really missed Zack and Jay. She is happiest when she is with them and fortunately for me, I’m happiest when Robin is happy. I’m lucky that I don’t require her to be doing things with me to feel whole. Neither one of us is “needy or clingy”. We started with a long distant relationship and we are very comfortable knowing the other person is doing what has to be done.
I will admit when I dropped her off at the airport I realized that I would be “alone with my thoughts” for 4 days. I not only didn’t miss a beat, I felt I got stronger because I have to, no other reason, I don’t want failing to be an option so I have to stay the course and I did. I wrote about this earlier, there was no way I could go home. I can’t afford to lose my intent and resolve at this stage of the game. I believe if I went home it would have been hard to reboot my energy. I would have weakened at precisely the wrong time. I will have plenty of reasons to soften in the next few months I don’t need to create more opportunities for that.
They think of everything at MDA, last week had a prostrate exam and today I had ultra sound on my neck because radiation can affect some of the arteries and create strokes. Have to meet with that doctor again tomorrow before I go to the proton center. Never a dull moment. It’s not like you wake up in the morning and say “oh great, I have another appointment today other than radiation” but I admire and respect the totality of the treatment here. Like I’ve said, I have total faith in MDA, so I just do what they say.
Ok, that’s it for now. Not sure when I’ll check in next, aren’t you lucky. Supposed to have a couple reasonable weeks before things change gradually and the accumulative effects take over. Once again, thanks for all the cards, emails, text etc. They have great meaning to both Robin and I.
My best “friend” for the next 7 weeks!
Below: Felicia and Chris drove all the way from Baton Rouge just to go to the game with us then drove back the next morning……good friends!