Cancer anyone?
If you start to read this, you can blame Pam since she requested multiple times that I do a journal describing the tour of Neck cancer.
If you continue to read this you have only yourself to blame.
Yep, though I'd retire and try to wear out some motorcycles and burn as much fossil fuel as possible. Things don't always go as planned. About the time I get my feet in the starting blocks I find out the game has changed and instead of managing a company, I'm managing my own health care future.
During our vacation in Maui this past February I developed a lump under the right side of my chin that seemed like the lymph node that I've had a half dozen times during my past 57 odd years. When I returned home my Nagy assistant at the office, Erin, made a DR appointment for me to see about the lump. A fine needle biopsy revealed Squamous cell carcinoma, AKA head and neck cancer.
The first step is getting educated about head and neck cancer. This day and age the internet will teach you how to crush grapes, build an atom bomb, or enlighten you from hundreds of web pages describing your condition. Additionally, everyone that feels the need to share their story adds to the drama. I think its part of the disease. The more dramatic, the more you read on. Several times Suzanne banned me from the web due to the dark pained pictures some folks paint.
It's fair to say that contracting a disease that starts with the letter C is enough to spook anyone with a pulse. I decide it probably won't help my cure by stewing on the "why me question". Didn't seem to fit. So, with a positive attitude I contacted friends that had friends that either had a special doctor friend or had a pal that had a similar case. Now I'm getting first hand accounts of the treatment and the life challenges that go along with it. Except for the death-if-not-treated option, the cure plan side effects seems worse than the cancer. Promises of burned throat, inside and out; swallowing problems, feeding tubes for 6 months to a year… and that's just the radiation part. We've all heard the Chemo side effects; hair loss, weight loss, weak and tired, barfy feeling. WOW, sign me up for 2 session of that one. Sounds like a dandy.
Wednesday, September 24, 2008
#2 Dr selection
Bring on the doctors
Through a referral I started in San Diego meeting with a doctor who performed a pandoscopy (a what?) by using a general anesthetic he snipped small pieces of skin in my nasal, base of tongue, and throat in search of a “primary” cancer site. It’s all new to me so you are likely learning the terms as I have: one by one rapid fire. His analysis was “no known primary” which calls for infusion chemo: 3 different type chemo’s infused 2 to 4 times, then carpet bomb my throat with radiation to catch any possible cancer cells in the typical areas. Just like cops, round up the usual suspects.
Time for a second opinion.
Met with the Stanford folks where they had an impressive “tumor board” review of many doctors and interns poking and prodding in order of rank. Their analysis was the original Pandoscopy was not complete enough and it was time to try again to identify a primary. Through my readings it was clear that head and neck cancer regularly hides in the tonsils so I instructed my doctor to be certain to eliminate that possibility and remove anything that was doubtful. During surgery he determined that my right tonsil was irregular and upon doing a biopsy on it determined it was the primary or source. Whoopee!
A third opinion?
In the meantime I had an appointment previously scheduled for an opinion at UC San Francisco, a highly recommended treatment center. Upon meeting the ENT (ear nose and throat) specialist, Dr Wang, and meeting Sue Wong, the radiation oncologist I felt a connection and liked their team approach to treating me. Beside, I always wanted to hang out in San Francisco which is one of the top ten cancer centers in the US and home of the Rice a Roni trolley car. Hey, may as well have some fun while they torture you with chemo and radiation eh?
With that decision made I meet with the medical oncologist, Sarita Dubey, AKA the Chemo lady. After much discussion I settled on a drug regiment similar to chemo called Erbitux, a drug that was made famous due to Martha Stewart trading the ImClone made drug. There were several nasty long term side effect tradeoffs that I was avoiding. One being permanent swallowing issues and the other was to save my hearing which is already damaged from motorcycles, nail guns, guns, with a pinch of genetics. Huh?
Last second news
The ultimate cure is the radiation that is intended to kill the cancer cells which also kills healthy cells but the healthy ones should regenerate successfully. I guess that’s why doctors get the big bucks to figure this stuff out. A mask was formed around my head, neck, and shoulders to prevent any movement on my part while the radiation was to be delivered. Yep, they bolt you to the table to remove any movement. Time for one last PET scan: a CT scan that identifies heavy concentrations of glucose, a need for hungry cancer cells. The scan revealed a “lit up” left tonsil. My radiation doctor, Sue Yom, told me that she wouldn’t treat me with an inconclusive diagnosis. The choice was to treat both sides of the neck or prove the left tonsil was clean. I returned for a 3rd surgery to remove the left tonsil which revealed cancer in that side too. Now we’re having fun.
Through a referral I started in San Diego meeting with a doctor who performed a pandoscopy (a what?) by using a general anesthetic he snipped small pieces of skin in my nasal, base of tongue, and throat in search of a “primary” cancer site. It’s all new to me so you are likely learning the terms as I have: one by one rapid fire. His analysis was “no known primary” which calls for infusion chemo: 3 different type chemo’s infused 2 to 4 times, then carpet bomb my throat with radiation to catch any possible cancer cells in the typical areas. Just like cops, round up the usual suspects.
Time for a second opinion.
Met with the Stanford folks where they had an impressive “tumor board” review of many doctors and interns poking and prodding in order of rank. Their analysis was the original Pandoscopy was not complete enough and it was time to try again to identify a primary. Through my readings it was clear that head and neck cancer regularly hides in the tonsils so I instructed my doctor to be certain to eliminate that possibility and remove anything that was doubtful. During surgery he determined that my right tonsil was irregular and upon doing a biopsy on it determined it was the primary or source. Whoopee!
A third opinion?
In the meantime I had an appointment previously scheduled for an opinion at UC San Francisco, a highly recommended treatment center. Upon meeting the ENT (ear nose and throat) specialist, Dr Wang, and meeting Sue Wong, the radiation oncologist I felt a connection and liked their team approach to treating me. Beside, I always wanted to hang out in San Francisco which is one of the top ten cancer centers in the US and home of the Rice a Roni trolley car. Hey, may as well have some fun while they torture you with chemo and radiation eh?
With that decision made I meet with the medical oncologist, Sarita Dubey, AKA the Chemo lady. After much discussion I settled on a drug regiment similar to chemo called Erbitux, a drug that was made famous due to Martha Stewart trading the ImClone made drug. There were several nasty long term side effect tradeoffs that I was avoiding. One being permanent swallowing issues and the other was to save my hearing which is already damaged from motorcycles, nail guns, guns, with a pinch of genetics. Huh?
Last second news
The ultimate cure is the radiation that is intended to kill the cancer cells which also kills healthy cells but the healthy ones should regenerate successfully. I guess that’s why doctors get the big bucks to figure this stuff out. A mask was formed around my head, neck, and shoulders to prevent any movement on my part while the radiation was to be delivered. Yep, they bolt you to the table to remove any movement. Time for one last PET scan: a CT scan that identifies heavy concentrations of glucose, a need for hungry cancer cells. The scan revealed a “lit up” left tonsil. My radiation doctor, Sue Yom, told me that she wouldn’t treat me with an inconclusive diagnosis. The choice was to treat both sides of the neck or prove the left tonsil was clean. I returned for a 3rd surgery to remove the left tonsil which revealed cancer in that side too. Now we’re having fun.
#3 Ready, set, treat!
Treatment
Enough discovery and pondering. Time to start treating. Monday morning I arrive at the chemo induction ward where my nurse is wearing a button on her lapel that states “cancer sucks”. Amen.
Needles, IV bags, inject able Benadryl, and finally the Erbitux. After my Benadryl induced nap Suzanne and I head for home. The next day was a sleep fest with bouts of nausea and exhaustion. The recipe calls for Erbitux in advance then start the radiation a few days later. The idea is the Erbitux causes the cancer cells to awaken the receptors and allow the radiation to do its job better.
So, here I sit after 4 days of radiation and 2 rounds of Erbitux. I have a predicted case of acne on both sides of my nose and on my forehead. They tell me I won’t feel the effects of the radiation for about 2 weeks. In the meantime I’m settled into a pal’s house here in the city about 4 miles from my treatment center. I pass thru the Haight-Ashbury district and Golden Gate Park every morning on my way to treatment. I’m quickly learning my way around the city. Muni trains, busses, Democrats, aggressive drivers, hills, guys holding hands, and amazing views on a clear fall day after the morning marine layer lifts.
Life in the city
Film at 11:00
Enough discovery and pondering. Time to start treating. Monday morning I arrive at the chemo induction ward where my nurse is wearing a button on her lapel that states “cancer sucks”. Amen.
Needles, IV bags, inject able Benadryl, and finally the Erbitux. After my Benadryl induced nap Suzanne and I head for home. The next day was a sleep fest with bouts of nausea and exhaustion. The recipe calls for Erbitux in advance then start the radiation a few days later. The idea is the Erbitux causes the cancer cells to awaken the receptors and allow the radiation to do its job better.
So, here I sit after 4 days of radiation and 2 rounds of Erbitux. I have a predicted case of acne on both sides of my nose and on my forehead. They tell me I won’t feel the effects of the radiation for about 2 weeks. In the meantime I’m settled into a pal’s house here in the city about 4 miles from my treatment center. I pass thru the Haight-Ashbury district and Golden Gate Park every morning on my way to treatment. I’m quickly learning my way around the city. Muni trains, busses, Democrats, aggressive drivers, hills, guys holding hands, and amazing views on a clear fall day after the morning marine layer lifts.
Life in the city
Film at 11:00
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