Bill Harmon, Random Thoughts ~ June 27, 2016

Went back to the scene of my lowest point during my depression, the radiology wing of MDA. I was in a considerably better place this time, but it’s definitely “different” in this department. First of all, it seems like it’s in the bowels of the building, no windows and poor lighting; seems “dark”. First I had to go pickup my stent/mouthpiece that will attach to my radiation mask during radiation. That went seamlessly and now off to radiation. As we walked along, I thought back to that day in May when I reached a depth of fear and depression I didn’t know existed. I thought about how different I felt this time (not exactly cocky), but also was acutely aware that I wasn’t immune to going back “there” in a heartbeat. The reality was that I was light years past that period. We had moved to Houston and I had completed 5 chemo treatments with only one more to go the next day. I was now embedded into my treatment. I was comfortable at MDA, had sharpened my coping skills relative to being one of the many cancer “patients” and was learning how to deal with all the suffering encountered when you walk thru the doors. I was also comforted by all the brilliance I was surrounded by as I walk the corridors at MDA. The place does have “energy”. I was comforted by how fortunate I am to be here, in and amongst the best cancer hospital and research center in the World; plus, my cancer is treatable. I always have to remind myself of that because it simply is not the case with many patients that I share waiting rooms with. That is one of my constant battles. I am not comfortable around people who are suffering. It breaks my heart, but when I’m at MDA, I have to selfishly put my recovery first. I’m always “on guard” for anything that’s going to send me reeling towards depression. So I try to tap into my abilities to feel compassion, but I still have an important responsibility and that is to be a good patient, so I can’t afford to start “dreading” trips to MDA. EVERY appointment has to have the proper intent…….one step closer……one step closer……keep going forward…….protect your spirit and resolve……deep down I know that will be tested shortly.

We wind our way to radiology and when we arrive, the waiting area is only about a quarter full, last time it was at capacity. I scanned the room quickly and didn’t notice anyone in particularly bad shape. Things are looking up. We check in and are led into an office to await our consultation. It will be with Dr. Rosenthal’s radiation assistant; probably the same lady who freaked me out the last time. The reality is that this is the part of my treatment that scared me to death and I’m still a little scared, but I’m not fueled by it. I’ve accepted that this is what I have to do, I know it will be hard, I know it will be a grind. I know I will weaken at times, but I’m getting this done. I have to and it’s not optional. Everything I’ve done the last 6 weeks has been to prepare for this. I feel like I’m honest with myself and very realistic about what’s ahead of me. I never feared chemo, maybe the uncertainty of things, but little or no “fear”; just the usual stuff of not “knowing” what to expect. Now, if I knew the severity of the rash I WOULD have feared it!  Eventually the radiology assistant walked in and it was her! She actually is very, very nice; I just wasn’t prepared for her message six weeks ago, not even close. I was pretty sure I wasn’t going to “like” her content this time, but I know it’s going to be real and necessary. I’m ready, let’s go! She tells me that I will be fitted for my molded mask today and asked if am I claustrophobic. I say nothing out of ordinary. She says they can sedate me every time I have radiation if there is a problem. I start thinking, I have no idea what this mask entails she tells me about and it sounds complicated and weird. Maybe it will freak me out……ok, ok Bill, simmer down little guy, let’s move past this. She then proceeds to go over the possible reactions I may have from the radiation treatments. The Dali Lama wouldn’t enjoy this! I just tell myself that this is my new reality, don’t fight it and just try to “accept” it to the best of my ability. Remember, don’t dread this, you are not starting anything until you do the prep work and oh yea, maybe “a little faith before fear”……yea, give that a shot….ok, I’m ready! Here we go; I’ll list the short version!

Reduced saliva, Loss of taste and appetite, Altered sense of smell, Nausea, Sore throat, Difficulty swallowing, Weight loss, Fatigue, Skin changes, redness, irritation, scaling, blisters, color change and hair loss, Hoarseness, Loss of voice, Nasal passage blockage, Ear inflammation, Loss of hearing, Dizziness, Dry eyes, Tooth decay and gum  changes, Bone damage in the jaws, Permanent hair loss, Scarring of the  skin, Throat damage, Loss of vision, Brain, spinal cord and nerve damage causing loss of memory, strength and body coordination; and Thyroid gland damage requiring long term therapy.

Ok! Great! Can I sign up to do radiation a couple times!! Surely you could have come up with some more stuff!! How the hell do you look at that and not feel a little “something”?!!! Now……it is their duty to give you the absolute worst case scenario and they did it beautifully!!! I understood this as she was going over all this and at some point I just told myself “no need to react to any of this now, one day at a time, remember?” By the end of our session, I was quite normal. I bet half of these things won’t happen and have a pretty good idea of the things that will occur. All in all, good meeting and I was feeling ok, all part of the package, can’t pass, gotta play. Now off to get my mask.

I’m called into this room that has “one of those tubes” to slide me in. I have to put in my brand new mouthpiece and I’m asked to take my shirt off and lay on the table. They bring out this rather large slab of this plastic, meshi looking thing. They explain they will dip this in warm water, which will soften it and they will then conform it to my face, neck and chest area. This is going to immobilize me from the chest up so I can’t move a centimeter during the process of radiation. I had already been educated on how precise it MUST be and that it is a very complicated process when done in the neck and throat area. It must be perfect. Eventually, they cover my face with this now warm, wet and pliable plastic. There were three people working quite frantically, but as a team and I had the sense they had to get it right. I was unusually calm for some unknown reason, no fear and no claustrophobic feeling. As I was lying there, I surmised that I felt this way because I had been preparing myself for the last 6 weeks to do “one appointment at a time”. Inwardly, I was very proud of myself. I had decided to face my fears, not allow them to be my fuel and at this very moment, I was winning and I liked it. They ran me thru the scanner a few times then they agreed it was what they wanted. They used crow bars to attach it and get it off!! I now had my mouthpiece and mask that will be “my uniform” 5 days a week for 7 weeks. In a very strange way, it made me feel more secure, it was my security blanket. When they took the mask off, I looked up and Dr. Rosenthal was standing over me. Wasn’t expecting that, but also made me feel good. He mentioned that the mask was fitted perfectly and that he would see me shorty in the clinic. Given the difficulty of what I would be facing soon, I was comforted that the plan was in motion…….my journey into radiation had begun…….it gave me a renewed sense of hope that someday I was going to be ok……someday……

I went into the clinic to see Dr. Rosenthal. I was really looking forward to this meeting. I was hoping to get my radiation schedule and to find out if insurance ok’d the proton treatment. We had been told that it’s quite a hassle getting the insurance companies to sign off on proton and that they prolong things with countless appeals. What I didn’t want was to have the appeals delay my start date, but Robin and I agreed not to be addicted to starting at a certain time. I had already experienced what “expectations” could do to me, having to keep my guard up. Dr. Rosenthal is one of the most unique people I’ve ever been around. You can sense his intelligence and brilliance yet he’s quite quirky and different in a good way. We go in to see him, I sit in “the chair” and Robin sits down next to him. He has all his info on me scribbled down on index cards, quirky huh?!! He proceeds to ask how we are, etc. and pretty soon he’s talking about golf. Don’t think he’s an avid golfer, but played as a kid and occasionally plays with his son. He is totally relaxed and it makes me feel the same. He opens up about me starting radiation in the next week or two. I liked that! I asked if the proton had been approved and he went into a very funny rendition of dealing with the appeal staff (not in a flattering manner I might add), but said he would call in the morning. What we didn’t know is that he had put in for proton as soon as we agreed to do radiation at MDA back in May. I liked that also. He said that he was going to bring in another specialist to examine me.  He said that’s a very common practice because MDA believes in getting the best information, discussing it’s making the best decision. It also makes the patient feel good! He brought in the other doctor and he was in a wheel chair, he immediately wheeled himself over to me and started checking me out. A couple minutes later Dr. Rosenthal put the microscope down my nostrils to get a good look at the tumor. Of course he had to do that!!! They both immediately said in a somewhat surprised tone (I thought) that they were very happy with how much the chemo had shrunk the tumor. Spoke in very, very positive terms about how it had shrunk away from areas that may have affected my vocal cords and seemed very happy with what they saw, which of course made us very happy! He then stepped out of the room for a few minutes. While he was gone for the third time that day, I did something stupid that set Robin and I off into an uncontrollable laughing mood! It got so bad that she covered her face so she couldn’t look at me. It was totally dumb and terribly funny. Humor and gratitude is some strong fuel!!

A few minutes later, Dr. Rosenthal came back, took out his phone and showed Robin an email he just received from the insurance company that Ok’d proton treatment!!! What a day huh?! Mask made, tumor has shrunk dramatically and we get accepted for proton. The proton can diminish the side effects quite a bit. Because it is much more precise, it doesn’t affect the surrounding areas by the tumor as much as the other radiation.  He then said I would start on July 11th. Can’t tell you how happy I am that I will be done with chemo on Tuesday, have two weeks to recuperate and then get started on the next journey. I’ve been gearing up for it for a while, but I will start to double my emotional efforts these next two weeks.

We were at MDA for 6 hours today and when I got back to the apartment, I was totally spent. I immediately went into the bedroom and within minutes I was out. It’s interesting how exhausting dealing with cancer is without even knowing it. I guess we are learning on the run how to deal with something totally foreign to us.

Well that’s it for now. I don’t think I’ll be “journaling” the next few weeks. Hopefully I will get back to feeling almost normal and get ready for phase two.

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1 Comment

  1. Bob Arrigoni says: Reply

    I love your attitude Bill, you are one tough guy who will deal with this time of trial with grace and courage. This is exactly what we would expect of you. My prayers have been and will continue being sent your way. I look forward to seeing you next season. Bob…

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