Hannibal Lecter Day

March 31, 2011 – This morning I had my first visit with Dr. Arb, Medical Oncologist I’ll now call her ChemoDoc. My radiation Oncologist, Dr. Neal will be RadDoc. I might as well have some fun with this. ChemoDoc was VERY thorough and covered everything very well. I’ll be getting something called Cisplatin intravenously once per week (3 hours each). Anti-nausea meds and plenty of fluids will be included. They’ll be looking for excessive fluid loss over time as well as weight loss issues. A feeding tube will only be needed -  if needed. I need to be able to swallow well enough to keep myself alive.

This afternoon I was at RadDoc’s office for a CT scan and the creation of my Hannibal Lecter mask. That was no big deal. I’m getting used to getting poked and filmed now. Then it was a conversation with…..who the hell was that again…..some nurse named Debbie who gave me general information about treatments, clinical studies, side effects and more than I cared to listen to anymore. Seven weeks of radiation, 5 days per week.  The PET scan (tomorrow) will help RadDoc and his team decide on the exact methodology.

Emotions – Just glad to be getting going. I’m resigned to it now. Joanne is feeling stronger too. I guess you can get used to anything.

Oncology Day

March 29, 2011 – visit with the Radiation Oncologist – I spent 2 hours with Dr. Neal today and he went over EVERYTHING. I have a dentist appointment tomorrow, a visit with a medical oncologist (chemo) on Thursday, and then they have to create a mask for me (to keep my head still during radiation). I need a PET scan to see if the cancer  has spread beyond my tongue and one lymph node. Most, or all of that is over the next 3 days. Then they create the plan of attack and do a “dry run” to test their plan before they actually burn me with radiation. I may be able to eat during the treatment (with the help of pain pills) and if I can’t, a feeding tube will be necessary. The importance of keeping well fed and hydrated was emphasized. I’m told that I’m in for 6 months of misery overall (at various levels) but at first I’ll be relatively ok. The worst times are right after treatment ends so about 7 or 8 weeks out I’ll wish I was dead (maybe).

Emotions – I have my swagger back. I’m an arrogant asshole again. I need that attitude to go after this crap in an aggressive manner. I’m feeling pretty good for some reason and feel like my old self. That’s a good thing. I feel like I’m going to beat this misery and still have a decent life. If I’m wrong, so what? I’m glad I’m feeling good again. I played golf tonight feeling unbeatable. It was good to be back. I won too. I’m sure I’ll have worse days so I’m enjoying today as it is.

Dreary Monday

March 28, 2011 - Crummy day here in Leland with damp, cool weather ruining my golf day. I think I've been remiss in not mentioning the fact that my wife has been nothing but totally committed to me and my new reality. I think she's suffering more than I am over this. By now I'm mostly pissed off and disgusted  but Joanne is truly suffering with sleepless nights and some truly crummy days as she internalizes my misery. I feel like I need to care for her as much as she is me. Watching me endure the months of treatment will NOT be the highlight of her life. I feel as bad for her as she does for me. She certainly deserves better than the hand she's been dealt. My once athletic self has been declining for years. I feel bad about that.

Waiting for Tuesday

March 27, 2011 – Waiting for Tuesday. As we all know, time flies when you’re having fun. Just the opposite occurs when you’re not. I’ve been more less moping around for the past couple days knowing that my appointment with the Radiology Oncologist isn’t until Tuesday. I am going to a play today so that will kill some time. Time……I have plenty now but at the same time, don’t know if I really do.

The Start - the first week

Oral Cancer Journal

March 20, 2011 – I’ve decided to write this blog to have an outlet for my newly found discovery that I have oral cancer. I’ll post information on my treatment progress and also how I’m coping with all the misery I’m soon to endure. I hope it will give people insight as to the day to day life of an oral cancer patient. I don't know how often I'll post but hope to do so regularly.

The Beginning

I’ve been having some physical hints of problems for probably 6 months. I never took them seriously because the swallowing problems were barely detectable and my chronic cold symptoms seemed to be just bad luck.

However, about a month ago I noticed a lump on my neck below my chin on the left side. I figured it was something to do with a lymph gland but never thought it to be a big deal. Fortunately, my two week long “cold” sent me to my doc to see if I had a sinus infection. I was quickly referred to an ENT doctor and off I went on the road to being a cancer patient.

On March 15, the doctor listened to my tale of woe and scoped my sinuses and throat. He explained the results and told me what he thought: oral cancer that has spread from the back of my tongue to my lymph gland. Next was a CAT scan to see if it was true. Three days later I had the scan and immediately visited the doctor again. He explained the results confirming his original opinion. Next Thursday, March 24^th will be the biopsy and then on to a treatment plan.

Emotions: I’m at my best (and some say worst) when I handle things unemotionally and rationally. I do poorly when I let anger, frustration or fear get in the way. But no words can describe the shock of finding out you have cancer.  No amount of rational thinking helps at all here. It’s just a body blow that you cannot simulate – and your first reaction has to be fear. Nothing seemed important anymore – because in actuality nothing else really is.

I think we all take our health for granted but that’s not a bad thing in some ways. It allows us to live a somewhat caution-free, carefree life without fear. This sense of being bullet proof helps us live a normal life, take risks and be successful. Yet, this sense of invulnerability can blind a person to the realities of life. So we wait too long to get symptoms checked out. We need to find the right balance between denial and hypochondria.

March 22, 2011:  Nothing really going on except for my difficulty finding joy in all of my old activities.  I haven’t touched my guitar since Friday night and don’t seem to want to. Played golf and enjoyed the usual camaraderie but it didn’t feel the same. It feels like I’m one level removed from it all. I recognize everything; it’s all familiar; I can even banter a bit as usual but it’s still feels detached from reality. It’s like  my reality now has nothing to do with what used to be normal life. Off to bed.

March 24, 2011:  I had my biopsy today. The results were as expected with no surprises either good or bad. I’m really not hurting much from it but as evening arrives I’m feeling a little bit nauseated for some reason. I took one pain pill earlier and that killed any pain and felt mostly dull and lethargic. Next is a meeting with the treatment team; hope to know when tomorrow.

Emotions:  I continue to gain strength from the many, many people who have reached out with great compassion for my plight. I’m more affected by that than I thought I’d be. It’s like I feel their positive energy somehow. It’s wonderful to have friends like this.