I was continuing to struggle with what looked like everyone else to be depression. I thought I was doing fine and really didn't understand what they were talking about. When Robin finally told me she was going to pretty much demand I talk to someone, I knew it was serious. I know a guy at church who is a psychologist so I gave him a call. We know each other well enough that he couldn't be the one to see me but I thought I would give him the Cliff Notes version of things and see where he thought I should go. He told me about the Beck Depression Inventory which is a standard testing vehicle and then told me not to bother taking it...yet. He told me it is very common for people this close to cancer treatment to test as depressed (the fact that I had also lost my dad practically insured a positive result) and that a period of time similar to the grieving process should be allowed to pass before I get too worried. He told me to seek help if I thought I needed it now but that what I was feeling was quite the norm.
Robin had also contacted a national body called SPOHNC which stands for Support for People with Oral, Head and Neck Cancer to ask about support group meetings. They put her in touch with a local guy and they spoke on the phone for quite a while (I was told later. At this point she had not told me what she was up to). She was describing the difficulties I was dealing with and he stopped her mid-sentence. "Robin, everything you have described is perfectly normal and matches my experience to a T." Later that day Robin told me we were going to the SPOHNC meeting Saturday morning. I may have mentioned it before but will mention it again here, I am NOT a support group kind of guy. I do, however, recognize my wife's wisdom and to the meeting we went.
We met in a conference room in a small hospital that is pretty quiet on weekends. It was a smaller gathering than usual and the facilitator of the meeting asked each one around the table to introduce themselves and speak briefly about their disease and treatment. Within a minute or two I felt like a complete and total jerk for feeling sorry for myself for even one minute. Most of them were 10 or more years post-treatment meaning that when they were treated they didn't get the cool IMRT machine like I did. They basically blasted away with radiation from jaw-line to collar bone. Some of them received their radiation in two treatments PER DAY. One guy ended up losing about 3 inches of his jaw bone on his left side and they filled the void with part of his left pectoral muscle. The guy sitting next to me makes absolutely no saliva and has not eaten solid food in five years; he gets his nutrition solely from Ensure. What was most amazing is the attitude of each and every one of them. They were smiling, laughing and even cracked jokes about themselves. I was sitting in a room full of badasses.
They were also full to the absolute brim with information that they couldn't wait to share with me. They knew right where I was because they had been there too. What did they tell me? How about this...
1) I was comparing myself.. my eating, my strength, pretty much everything... to the old me. It may be sad but it is no less true that the old me was gone for good. There are things about me that are changed forever. The guys at the table told me I was not the pre-cancer guy, and I was certainly not the sick guy anymore, I was this third person. And he is not bad. It was incredibly liberating to hear that from them. I had a blank slate to start with as this 3rd guy.
2) I had been most depressed about the rate my swallowing was improving. It wasn't. I found out it probably won't. Most of the guys (and they are 10+ years further along) said eating had not been fun since completing their treatment. After hearing that I took a long look at where I was and decided that if this was as good as my swallowing was going to get, I could live with it. Once I made that decision and was OK with it, any improvement I do see will just be gravy.
3) I learned several things I need to keep a pretty close eye on the rest of my life. I will need to have frequent thyroid checks as that poor organ was right in the way during radiotherapy. If it is going to give me trouble it will be in about two years. The carotid artery of people who have had radiation therapy in their neck can be problematic later in life. None of this was said in a way that scared me at all, it was more like one friend telling another what to look out for during an upcoming journey.
4) This one was my favorite! I said something about passing out in the closet and pinching the nerve in my neck. As I described the sensation I felt when I lowered my chin to my chest one guy laughed out loud and several of them just started shaking their heads affirmitively. "Thats called L'Hermittes Sign. It is caused by the chemo and radiation and lasts about 18 months." I almost started crying. I wasn't crazy! The guy who told me what it was called pulled up the Wiki page on his iPhone and slid it to me so I could read it. The symptoms were incredibly familiar.
Meeting with these guys completely turned me around. I think that day is when I started really healing.
No comments:
Post a Comment