Monday, June 30, 2008

Update

I am really ready to get started with treatment!

Since my last post I have seen a audiologist and had my contrast ct scan. Good news on the hearing front, I have very good hearing. Couldn't prove it from my family, but I guess there is a difference between hearing and listening. I had the contrast ct scan on Friday and the procedure went off without a glitch. I continue to be amazed by the massive web that is UCSF. They are a wonderful group of people and I am so blessed to have them on my team. I hope to have the results of the scan this week.

Joyce and I went to Mendocino this last weekend with our wonderful friends Kim and Barry Johnston. We did absolutely nothing other than a couple hour outing to walk around downtown Mendocino, but that was wonderful. It was nice to get away from the smoke in the East Bay. It was foggy all mweekend, but after all it is the California coast in June. We stayed at our friends house - Dave and Deanna Bing. What a fabulous house and what terrific friends they are for lettingt us use it.

Today I see the radiation oncologist. And frankly, I am not looking forward to it. I think mostly because I know this is the first step toward radiation treatment. I know we are all different and respond differently to radiation treatment, but this is the aspect of treatment that frieghtens me the most. Oh well, bite the upper lip and get through it.

I'll be back and post more later.

Tuesday, June 24, 2008

Update - Visit Dr. Mark Courey - UCSF ENT Surgeon

I learn new things about myself and the process every time I go see a new doctor at UCSF. Phew, this really wears me out!

Most of you know how I enjoy being in control. I am a degenerate planner. Well, I believe one of the many gifts I will receive from this disease in me is that I will be more accepting of not being in control. However, it will be challenging.

I was expecting the experience this morning with Dr. Courey to be similar to my experience with the ENT Surgeon I visited at San Ramon Regional Medical Center. WRONG! The good part is that it was much more thorough. And the difficult part was it was much more thorough. They spent the better part of two hours crawling around my mouth, throat and nose. We also decided to do a biopsy of the tumor. FUN! Usually they put patients out for this, but being the stud that I am we decided to do it under local and . . . well you don't want the details. Dr. Courey gave me the speech that we are still gathering information and that it is very important to have the best intel before we start therapy. So, I am getting more lessons on being patient. He explained that his specialty is larynx cancer and that it his opinion that I likely have tonsil cancer (Point of Origin). I certainly didn't think there was much of a difference, but there certainly is in treatment. He also isn't ruling out surgery. So, another lesson for me in not getting ahead of myself.

We added another doctors appointment - Thursday (Niels' 18th birthday). I get to go see the audiologist. Seems there is a small risk of hearing loss related to Cisplatin chemotherapy. So, no pre-conceived notions of what this will be.

The great news is that I continue to feel strong and getting stronger every day under Michael Defino's guidance. Big thanks to my buddies Jim and Jim (Kelley and Gebhardt) for getting me hooked up.

I am looking forward to a couple of nice diversions over the next several days. Thursday, we continue a family tradition of going to Benihana for Niels 18th. I am so proud of the young man he has become. It will be nice to celebrate. On Friday, we take off for a weekend up in Albion (Mendocino). My great friends and wonderful clients Dave and Dee Bing are letting us use their beautiful house. It is amazing.

I will be back in touch after the weekend with details of the contrast CT scan and initial meeting with the Oncology Radiologist.

Be well!

Saturday, June 21, 2008

Initial Posting

I have never done this before, it is all new to me.

I will assume that those visiting my blog have recent history of my health. If you do not, please go to the section below under HISTORY.

I have centered my path to wellness around three central hubs as follows -

Medical - UCSF - Dr. Sarita Dubey
Mental Health - Dr. Katherine Czesak
Nutritional / Wholistic - Michael Defino


I thank those of you that have offered advice / referrals. Please know that I will take that advice to the three above and determine what treatment is best.

I have also created an inner circle that will be helping me make decisions as they come about. This group includes Joyce (my wife), Sue Edelmann, Jim Kelley and Jim Genhardt. If times become especially tough through treatment you can contact one of the them. I trust each of them more than they could know. I can't thank each of them enough for taking on this role, I would be lost with out them.

So where are we now? I will be getting a Contrast CT scan this next Friday (6/27) of my entire head and neck area. This will establish the baseline for my treatment. I will then meet with the oncology radiologist the following Monday (6/30) to prepare for radiation treatment. I will also be seeing a variety of other doctors / therapists to prepare for the ramifications of chemotherapy / radiation. I expecet the chemotherapy / radiation treatments to begin sometime during the week of July 7th.

In the interim, I am working to get my body as strong as possible. The crazy thing about all this is I have not felt better or stronger in quite some time. I am asymptomatic and that is the surreal part of all this. A very dangerous disease is growing inside of me while the rest of my body feels great. Go figure.

I will attempt to make postings as often as I am able.

Be well, and remember I HAVE CANCER, IT DOESN'T HAVE ME!


HISTORY

I noticed and abnormal lymph gland right around my 5oth brithday, April 24th. A week later I visited the doctor and he suggested (strongly) that I have an ultra-sound of my right neck. Those results came back unfavorable. So, we scheduled a removal of this abnormal lymph node on May 21st. On May 23rd I was told they found Squamous Carcinoma in my lymph node. I then had a PET CT Scan. They discovered the originating tumor is located in my throat (more later).

I then met with a series of doctors practicing in and around San Ramon Regional Medical Center. I also asked for and received another opinion from UCSF. The tumor boards theories of where the tumor originated and its possible cause differed. After much soul searching and support from many friends (more later), I asked Dr. Doubey at UCSF to treat me - she agreed.



    Monday, June 9, 2008

    My Initial Test Posting

    Thanks to Scott Kelley for helping me establish this blog.

    Please return shortly as I will update my progress as often as possible.