Now it’s onto radiation. This was the part of my treatment I most feared; still have some healthy reservations I might add. I don’t fear radiation per se; I fear how I’m going to react to all the side effects.
Last Friday, I went to an hour long class on what to expect from radiation. I was in this class with others that would be having radiation for head and neck issues. We started by watching a 20 minute video on the side effects of radiation. As usual, they give you the worst case scenario. I’ve already outlined most of them in a previous journal. They tell you that everyone reacts differently and that some of these effects will never happen and others will, but……when you do hear all the possibilities you would be hard pressed not to be a tad apprehensive. I don’t care who you are, you would feel something. The seminar took place in the very place that I had reached my low in May. I was acutely aware of how far I had come since then. At times it “poked” at me, but I didn’t take the bait. Like I’ve said many times, never once have I been offered an alternative short cut. This has been the drill from day one. The one side effect that I know I will have for sure is the intrusion it will have in my mouth and throat area. That will be the area that I think will be significantly compromised. It was addressed in great detail all the issues that would be dealt with. As the radiologist assistant spoke about the issues, he spoke an inordinate amount of time about all the “preventative” measures that would be required to maintain all things pertaining to mouth, saliva, mucous, dental and throat issues. The daily maintenance required to keeping one hydrated, taking in enough calories and ultimately swallowing was quite extensive. From gargling different “solutions” 6-8 times a day, dealing with what maybe a total loss of taste to getting one prepared to eat 6-8 small meals a day. He gave us a booklet that outlined all the possibilities that I put in the last journal and the possible treatments for them. As he spoke, I realized that I had to “shut down” the “worry machine”. The reality is that other than the burned skin from my nose to my chest and the throat issues, I have no idea what other side effects I’m going to have so why get all worked up about it? I heard one time in a recovery meeting “that 95 % of the stuff we worry about, never happens”. I’ll be truthful, I’ll settle for 50% on this deal!! The pamphlet they gave us outlines all the things that can occur and suggestions on how to handle them. As he was talking “nurse Ratchet” was taking copious notes! He also said that we will meet with a dietician once a week, have a swallowing therapist assigned to each person and a psychologist will also be available. There will be experts to help with pain control and we have MDA available to us at all times; paints a very comforting picture from that aspect. One thing I do know, I’m in the right place. I have to do my part; that’s my plan.
The more he talked, the more I realized how fortunate (again!) that I was to have Robin with me. I couldn’t imagine going thru this without her. As I looked around the room, I wondered if all the patients there would be getting the same support that I was getting; I hope so. I knew as I sat there that she would start a conversation as soon as we got back to the apartment about how we were going to do EVERYTHING asked of us, EVERYDAY for the remainder of this treatment. I was right! She said she would alarm my phone for the “gargling times”, “feeding times” and every other thing that was necessary to increase my chances of a full recovery. She would do the same with her phone.
My mind then wandered to the person who gets the least amount of attention and concern, the caregiver…..Robin. I realized that I would have to use one of my most valuable “spiritual tools”….
“When all else fails, help another human being”. My attention turned to how I was going to treat her and how absolutely important that will be the next three months. Can I care as much about her and her needs as she will about mine? That will be my main goal because if I do that it will mean I did all the things asked of me to ensure a much better chance of a happy and healthy life after treatment, but what it really did (as it is designed) was it got me out of “fear”. I haven’t focused on the difficulty of the road ahead of me, I’ve accepted it. I have no reservations whatsoever that it will be difficult. That many, many times I will weaken, I will get down, I will be in pain for length of times that will eat at me resolve, I will feel defeated, but the one thing I will not do is take it out on Robin. She will be treated with the love, dignity and respect she deserves. We will do this together, every step of the way. Her concerns and needs will be as important to me as her concerns for me.Billy Chemo_062716
My basic fears are all about me. How will I handle what is now totally unknown. I’ve listened to all the info and heard all the possibilities but “I don’t know” what is ahead of me. The seminar painted a pretty bleak picture, but I still have no idea how many of the side effects will compromise my health, no clue. Will I be a weenie? Will my threshold of pain not add up to others? Will I not add up, as I had done so many times when I was younger? I’m not sure what to expect of me, that’s why I have to keep it in “today”……that simple expression “one day at a time”……it’s worked for 23+ years with my alcoholism and drug addiction. Jay Haas said to me that “if they told you 23 years ago you couldn’t have a drink for 23 years, you couldn’t have made it”. He’s right and that is the one expression that has permeated my journals. So far, I have done just that. To be very candid, I can’t even imagine this being over with, so I don’t go there, I just get thru today. It’s worked so far.
Have communicated with quite a few people who have gone thru chemo and radiation and it’s interesting how different every ones reaction is. Some are very positive and others had very bad experiences with the treatment. Not knowing how I will react, I have to keep an open mind, but albeit a positive one. I have to absolutely own my recovery. Take in all the info and advice and make the next 2-5 months be my expression. That won’t be hard for me. I’ve lived my whole life that way. Robin told me early on that when she had breast cancer, she heard all kinds of stories from many well-meaning friends, but at the end of the day she had to make her recovery just that….hers. I have been a sponge for all the people that have reached out to, but I still didn’t know if my side effects will be the same as anyone else’s. I do know, that I have zero expectation of this being easy….zero.
Many of the people I’ve spoken to were treated ten years ago or more. From what I understand, treatments have advanced since then and I will have the advantage of the relatively new proton treatment, which by all I’ve read, is much less intrusive to the areas that surround my tumor. One stat I read was that proton treatment lessens the chance of having a feeding tube 25-40%. So I take that to mean that perhaps it’s a bit easier to swallow and perhaps less invasive to other throat issues……but I don’t KNOW that…..
First treatment is on Monday, July 11. I have no fear of the actual procedure itself. The mask and mouthpiece stent didn’t bother me or being in “the tube”. Plus, they say that the first two weeks you won’t really be compromised, but after that it will get progressively worse. The side effects continue for 2-4 week after treatment and that’s when many get depressed because they have an emotional clock that says it’s over after the last treatment. Not going to go into the particulars, but it takes some people a year to feel “normal”. He said 6 months is a pretty good barometer from the start of treatment to when most will start getting normal energy, taste, swallowing and other oral issues in order. The thought of processing all of this is a bit suffocating, but I do appreciate how thorough the treatment at MDA is. Sometimes the things I don’t “like” are the very reason that I’m here. I have complete faith in my doctors and everyone I’ve dealt with at MDA.
Robin going home on Thursday, she will return on Sunday. Even though she has been out of town for 5 weeks, she keeps picking up real estate clients. As hard as she’s trying to do things from Houston, she misses “the human touch”. She will get to Palm Springs at 9 a.m. and work all day Thursday/Friday. Our son Jay is going to enter film school next month in LA and Robin will spend the weekend with him in LA looking for an apartment. I’m so glad she is going because for four days it will bring a sense of normalcy to her and Jay’s life. If she couldn’t do those things, then cancer wins on a different front. Plus, if I was her I wouldn’t mind getting away from me for a few days anyway!! I get it! We’ve spent so much time apart in our lives that it’s not only a non-issue, I think it’s healthy! I’m happy for her, Zack and Jay; they get their mom back for a few days!
I know you are all tired of hearing this, but I can’t express my gratitude enough for the support that we have received. As I face this new set of issues, I will be tapping into you even more. I will spend some time this week writing down a “gratitude list” specifically regarding the existing conditions of my medical situation. “If you are grateful you are happy and if you are not, you’re not”!