I am thinking about participating in the American Cancer Society “Relay for Life.” It is a walk-a-thon to raise money. I research before donating because there are so many deserving organizations that get lost in the crowd of less than efficient groups. Also there are many charity scams that bilk good intentioned people of hard earned money. Charity navigator is a resource along with the Federal Trade Commission and the IRS to check out the charity. I do not subscribe to the idea that “if it is big and established it must be OK.” The most successful scams are legal and endorsed by famous names.
In my personal experience livestrong helped me. They handle about 40 million dollars and are rated higher than the American Cancer Society. The ACS handles almost a billion dollars and seems to spend much of the money on fundraising events. Cancer related charities are huge business and accusations of collusion between big medicine, big pharma and the charities are a common theme among the blog-heads. I understand western medicine is not the only answer and that we tend to treat symptoms rather than focus on health but I do not think “it is all a scam.”
The treatment protocols that were used on me have a good track record with survival rates beyond five years. The five year benchmark is used because if you have “no evidence of disease” for five years and then die of something it is hard to pin the cause of death on the old cancer. Speaking from personal experience I imagine my lifespan is shorter due to the side effects of the treatment but much longer than if I left the cancer untreated. I also went with a known successful method rather than one of the alternative treatments. Steve Jobs was an inspiration.
If I do participate I do not want people to feel pressure to contribute. Charity should come from the heart. I believe in over tipping, it is best if it is done in a way that you do not get credit. The “pay it forward” idea taps into the same concept. I have no idea why God blesses me so much but, I should pass that on to others. It does not have to be money or material blessings. Being kind to one another even, especially, if they don’t deserve it is the idea. I have not reconciled this with not wanting to reward and encourage jerks. Errors should be on the side of mercy.
Thanks for all the prayers and support. Recovery is slow but steady. I will see the doctor for another checkup soon. Preparing the garden for spring is keeping me busy. If you feel strongly for or against the relay let me know.
Wednesday, February 26, 2014
Monday, February 17, 2014
Flying again
Yesterday I went flying for the first time in eleven months. It was great! It is just like riding a unicycle…err something like that. Gross motor skills and procedures were solid. Finesse was not consistent. As with all flights I have room for improvement. When I think I flew “perfectly” I will quit because my ego will have clouded my vision and that is dangerous. “Often wrong never in doubt” is a recipe for disaster. It is an interesting line between confidence and hubris. That is why it is important to have a honest feedback. Big thanks to George for being a good friend and mentor.
I can operate the aircraft to a level that makes a safe and conducive learning environment. It will be a few flights before I will want to fly aerobatics. We focused only on VFR flight; IFR will soon follow. I was happy that my neck did not restrict my ability or desire to scan aggressively for traffic.
I will be able to offer limited flight instruction until I receive my medical certificate. If the pilot can act as PIC I can provide instruction. This article outlines the details http://www.aopa.org/asf/publications/inst_reports2.cfm?article=4674
I think fatigue will be my biggest limiting factor. Thank you for your prayers and support. Thank God for all my blessings. Being able to open the world of flight is one of my favorites.
I can operate the aircraft to a level that makes a safe and conducive learning environment. It will be a few flights before I will want to fly aerobatics. We focused only on VFR flight; IFR will soon follow. I was happy that my neck did not restrict my ability or desire to scan aggressively for traffic.
I will be able to offer limited flight instruction until I receive my medical certificate. If the pilot can act as PIC I can provide instruction. This article outlines the details http://www.aopa.org/asf/publications/inst_reports2.cfm?article=4674
I think fatigue will be my biggest limiting factor. Thank you for your prayers and support. Thank God for all my blessings. Being able to open the world of flight is one of my favorites.
Thursday, February 13, 2014
Traveling by commercial air
I traveled to San Francisco last weekend. It was the first time I flew as a passenger since 2004. I am not in a hurry to repeat the experience. The cost and convenience is very hard to beat especially to major cities. As an employment program the TSA is a great success. Weather delayed us both directions. Passengers seem to be disconnected from the magic of flight and that is a shame.
I had an interesting conversation with a commuting corporate pilot. The shift to automation and electronic flight bags had shifted much of the workload back on the aircrew and away from dispatch. It seemed he felt CRM was being misused by junior crewmembers to distort the cockpit gradient rather than facilitate teamwork. Like many professional aircrew in big iron flying was a J O B rather than a joy.
The solutions that were created to address the Colgan accident do not seem to address the core issue. Additional hour requirements for first officers increase the cost of training. The aircrew involved in the accident would have qualified under the new rules, in other words, they had the hours. The saying is “a pilot can have 10,000 hours or one hour 10,000 times” meaning that one must learn from experience rather than just log time. The Air France accident illustrated that the stall spin accident was not limited to the inexperienced regional airlines flying relatively simple airplanes. The fundamentals of flying need to be emphasized and practiced. It is vital that the formative training builds angle of attack awareness.
I am excited to return to flight instruction. The FAA sent a letter acknowledging receipt of my application for a medical certificate. I have been studying and dreaming about flying and will get back in the air when the weather cooperates. Snow, rain, fog and high winds have been the hazards that present themselves on the days I have had availability. My physical and mental readiness is becoming more consistent. The commercial flights allowed me to examine my ability to equalize pressure in my ears and sinuses. I do not think I should skydive from 25,000 feet or scuba dive to 130 feet but smooth altitude changes below 10,000 feet should be tolerated well.
The reason I went to California was to comfort and seek comfort with my family after my Aunt’s passing. She lived a wonderful life and touched many people in a positive manner. Thank you for your prayers and support.
I had an interesting conversation with a commuting corporate pilot. The shift to automation and electronic flight bags had shifted much of the workload back on the aircrew and away from dispatch. It seemed he felt CRM was being misused by junior crewmembers to distort the cockpit gradient rather than facilitate teamwork. Like many professional aircrew in big iron flying was a J O B rather than a joy.
The solutions that were created to address the Colgan accident do not seem to address the core issue. Additional hour requirements for first officers increase the cost of training. The aircrew involved in the accident would have qualified under the new rules, in other words, they had the hours. The saying is “a pilot can have 10,000 hours or one hour 10,000 times” meaning that one must learn from experience rather than just log time. The Air France accident illustrated that the stall spin accident was not limited to the inexperienced regional airlines flying relatively simple airplanes. The fundamentals of flying need to be emphasized and practiced. It is vital that the formative training builds angle of attack awareness.
I am excited to return to flight instruction. The FAA sent a letter acknowledging receipt of my application for a medical certificate. I have been studying and dreaming about flying and will get back in the air when the weather cooperates. Snow, rain, fog and high winds have been the hazards that present themselves on the days I have had availability. My physical and mental readiness is becoming more consistent. The commercial flights allowed me to examine my ability to equalize pressure in my ears and sinuses. I do not think I should skydive from 25,000 feet or scuba dive to 130 feet but smooth altitude changes below 10,000 feet should be tolerated well.
The reason I went to California was to comfort and seek comfort with my family after my Aunt’s passing. She lived a wonderful life and touched many people in a positive manner. Thank you for your prayers and support.
Thursday, February 6, 2014
Flight Medical
I started the process to get my FAA flight medical. The flight doctor said it should take four to six weeks. AOPA estimated 45 to 90 days. The process is pretty straight forward. The flight doc conducts his routine exam and prepares a package for the “special issuance” which consists of the treatment protocol details and reports from the oncologist(s) that detail “no evidence of disease.” The professionals at UNC had already forwarded the majority of the information and when the flight doc asked for some additional reports they were quick to respond.
In other news my beloved aunt Libby lost her ten-year battle with breast cancer. She inspired me to keep a stiff upper lip. I miss her dearly. She took the doctor’s advice under consideration but did not let them keep her from living life to the fullest. At one point they told her she needed to put her affairs in order and she only had a few months to live. She got a second opinion, a different treatment team and lived several more years. She traveled the world both before her diagnosis and after. India, France, Russia and Australia were among her destinations.
When I was a teenager I spent the summer at her home in San Francisco. She was the ultimate “cool aunt.” I got to skateboard the hills of San Francisco, eat in China town, and cruise around the Haight. Always up for an adventure she encouraged me to have fun but made sure I was aware of the danger. As a single woman in the city she had her act together and tried to pass some of those “street smarts” to me.
She had a way of making me feel good about my accomplishments. I always felt like a hero when I was around her. I was a junior high punk and just starting to run and went to visit. This was when the “jogging” fad was booming and the park was full of goofy people with headbands and knee high socks jogging around. Libby, her boyfriend and I went running. She made me feel like I was a real human out doing the “cool new thing” instead of a little man-boy trying to fit in. I think that was her defining strength is that she gave people psychological space to do their own thing. She was genuinely excited to find out what you were into. She was also out living her own adventures.
Many of her adventures revolved around social justice. She was a case worker for years and helped many struggling families. I am blessed to have known her; I look forward to seeing her in heaven.
In other news my beloved aunt Libby lost her ten-year battle with breast cancer. She inspired me to keep a stiff upper lip. I miss her dearly. She took the doctor’s advice under consideration but did not let them keep her from living life to the fullest. At one point they told her she needed to put her affairs in order and she only had a few months to live. She got a second opinion, a different treatment team and lived several more years. She traveled the world both before her diagnosis and after. India, France, Russia and Australia were among her destinations.
When I was a teenager I spent the summer at her home in San Francisco. She was the ultimate “cool aunt.” I got to skateboard the hills of San Francisco, eat in China town, and cruise around the Haight. Always up for an adventure she encouraged me to have fun but made sure I was aware of the danger. As a single woman in the city she had her act together and tried to pass some of those “street smarts” to me.
She had a way of making me feel good about my accomplishments. I always felt like a hero when I was around her. I was a junior high punk and just starting to run and went to visit. This was when the “jogging” fad was booming and the park was full of goofy people with headbands and knee high socks jogging around. Libby, her boyfriend and I went running. She made me feel like I was a real human out doing the “cool new thing” instead of a little man-boy trying to fit in. I think that was her defining strength is that she gave people psychological space to do their own thing. She was genuinely excited to find out what you were into. She was also out living her own adventures.
Many of her adventures revolved around social justice. She was a case worker for years and helped many struggling families. I am blessed to have known her; I look forward to seeing her in heaven.
Monday, January 27, 2014
No Evidence of Disease
Praise God! I had a CT scan today and received the news that there is “no evidence of disease” which is the best answer they give. There will be additional specialists that look at the scans and they may find things. I will continue to get periodic examinations for the next five years to insure that I remain disease free. Thank all of y’all for the support and prayers.
They also checked my swallowing functionality and compared it with the baseline that we took at the beginning of the treatment. My throat works. The damaged tissues are healing.
I am scheduled for a flight physical day after tomorrow. It will probably snow and have to be rescheduled, but that is OK. Getting a medical will take time. My understanding is that the flight doc will gather the paperwork and send a package to Oklahoma City. The process of a special issuance will take a period of time perhaps ninety days. I am going to contact AOPA and expand my membership to include the pilot protection services. The special issuance for cancer survivors is not uncommon but like most government exchanges requires all the “t”s crossed and “i”s dotted, probably in triplicate.
I will begin refresher training soon to regain some of my proficiency. It will be great to fly again. Motorcycling will soon follow!
They also checked my swallowing functionality and compared it with the baseline that we took at the beginning of the treatment. My throat works. The damaged tissues are healing.
I am scheduled for a flight physical day after tomorrow. It will probably snow and have to be rescheduled, but that is OK. Getting a medical will take time. My understanding is that the flight doc will gather the paperwork and send a package to Oklahoma City. The process of a special issuance will take a period of time perhaps ninety days. I am going to contact AOPA and expand my membership to include the pilot protection services. The special issuance for cancer survivors is not uncommon but like most government exchanges requires all the “t”s crossed and “i”s dotted, probably in triplicate.
I will begin refresher training soon to regain some of my proficiency. It will be great to fly again. Motorcycling will soon follow!
Monday, January 20, 2014
Ninety days later
It has been a little over ninety days since my last blast of radiation. My recovery continues slow and steady. Not that long ago I was struggling against the damage. I felt as though I was drowning in a sea of pain and while my consciousness fought for air. I am now aware of my body and the parts that are damaged but I am not constantly consumed with unpleasant mind-numbing sensory overload. This recent transition really increases my optimism. For the poor sap that may have to endure this treatment here are some details.
The first two weeks the effects of the treatment were still dominant. Nausea, fatigue and pain were moderated with drugs. Hazy mental processes minimized awareness. After about three weeks my ability to taste food started to return. Strong tasting vegetables were the first to break through. Things tasted kind of like kerosene and cardboard for several months and the change really lifted my spirit. Taste continued to improve gradually and seems to be back to “normal.” One of the best aspects of this process was when water did not have an oily aftertaste.
Thirty through sixty days after were some of the most challenging. Since this is an anecdotal account of one individual it may not be the experience of other cancer survivors. The term “chemo brain” refers to the mental fog that one experiences during treatment. I determined that I should quit the pain medications. I relish mental clarity and want to return to riding motorcycles and flying airplanes. Although some people drive while taking these drugs I did not think it was prudent. The opioid drugs oxycotin and fentanyl are similar to heroin in structure and effect. During the treatment program I appreciated the pain relief. The withdrawal was not pleasant but the frightening specter of addiction helped inspire me. I began the process of reprogramming my brain to deal with pain. The emotional roller coaster I was on coincided with the holidays and dreary winter weather. Fighting depression was a constant battle.
Sixty through ninety days were a challenging period. My “job” was/is to recover. Day to day maintaining enthusiasm to work out physically, spiritually and mentally requires effort. The progress is slow and hard to notice during the daily grind. Some days are good and some days are better. Stamina is tremendously variable. One day I will be able to complete my physical therapy routine and do other tasks without much drama. The next day I might not be able to complete the physical therapy exercises and have to take a nap. I am learning to be nicer to myself. I get angry when I am “lazy” or weak. My wife helps me to understand that rest is one of the ways my body recovers and to cut myself more slack.
I am blessed with an excellent support structure. My friends and family shower me with love and encouragement. To give advice to other people on the cancer journey seems kind of pompous. I do not know your situation. I can tell you what works for me and hope it helps. Count your blessings. Thank God. Remember everyone dies. It is part of life. Try to enjoy and learn from the experience. Keep your sense of humor. Love on the people around you. Get a dog. Exercise, eat more vegetables, and try to rest. Stay mentally active, play games, read books, and pray.
How many cancer survivors does it take to change a light bulb?
Twelve. One to change the light bulb and eleven to applaud and remark how much it inspires them.
The first two weeks the effects of the treatment were still dominant. Nausea, fatigue and pain were moderated with drugs. Hazy mental processes minimized awareness. After about three weeks my ability to taste food started to return. Strong tasting vegetables were the first to break through. Things tasted kind of like kerosene and cardboard for several months and the change really lifted my spirit. Taste continued to improve gradually and seems to be back to “normal.” One of the best aspects of this process was when water did not have an oily aftertaste.
Thirty through sixty days after were some of the most challenging. Since this is an anecdotal account of one individual it may not be the experience of other cancer survivors. The term “chemo brain” refers to the mental fog that one experiences during treatment. I determined that I should quit the pain medications. I relish mental clarity and want to return to riding motorcycles and flying airplanes. Although some people drive while taking these drugs I did not think it was prudent. The opioid drugs oxycotin and fentanyl are similar to heroin in structure and effect. During the treatment program I appreciated the pain relief. The withdrawal was not pleasant but the frightening specter of addiction helped inspire me. I began the process of reprogramming my brain to deal with pain. The emotional roller coaster I was on coincided with the holidays and dreary winter weather. Fighting depression was a constant battle.
Sixty through ninety days were a challenging period. My “job” was/is to recover. Day to day maintaining enthusiasm to work out physically, spiritually and mentally requires effort. The progress is slow and hard to notice during the daily grind. Some days are good and some days are better. Stamina is tremendously variable. One day I will be able to complete my physical therapy routine and do other tasks without much drama. The next day I might not be able to complete the physical therapy exercises and have to take a nap. I am learning to be nicer to myself. I get angry when I am “lazy” or weak. My wife helps me to understand that rest is one of the ways my body recovers and to cut myself more slack.
I am blessed with an excellent support structure. My friends and family shower me with love and encouragement. To give advice to other people on the cancer journey seems kind of pompous. I do not know your situation. I can tell you what works for me and hope it helps. Count your blessings. Thank God. Remember everyone dies. It is part of life. Try to enjoy and learn from the experience. Keep your sense of humor. Love on the people around you. Get a dog. Exercise, eat more vegetables, and try to rest. Stay mentally active, play games, read books, and pray.
How many cancer survivors does it take to change a light bulb?
Twelve. One to change the light bulb and eleven to applaud and remark how much it inspires them.
Friday, January 10, 2014
Physical Therapy
The removal of the sternocleidomastoideus muscle during the radical neck dissection left a functional gap. My scalene muscles have taken much of the work. These muscles normally are more for stabilizing than moving the head and neck. It seems the muscles that attach to my hyoid are also being recruited. Gentle stretching and range of motion exercises are working. Concerns include overstressing the muscles and tearing the points of insertion.
The shoulder issues stem from the removal of the nerve that activates the upper trapezius muscle. After the operation the surgeon seemed surprised that I could move my arm above my head. I think the structure of the nerves in and around the neck have some variation and maybe not all of the spinal accessory nerve (cranial nerve 11) was removed. I have areas that are numb on the left side of my head, neck and shoulder so some nerve function has been affected. The removal of the stabilizing neck muscles also affects the shoulder. Further complicating rehabilitation is a previous injury. In the 1980s I broke and dislocated my left shoulder. I was able to recover good function.
Peripheral neuropathy is still a challenge. Reprogramming my perceptions, exercise and massage therapy are making it tolerable. I can not tell a difference in the intensity or frequency but I am purposely suppressing my perceptions. I am able to function better each day.
The final challenge is rebuilding my atrophied muscles. Eight months of minimal activity combined with heavy doses of drugs made me weak. In addition to the physical therapy specific exercises I am trying to increase my work load. Progress is slow. Recovery times are long. The amazing Benjamin Franklin helps me to walk daily and listens to my complaining without judgment. My lovely bride inspires me to fight for recovery and keeps me in line. Thank God for all my blessings. Thank y’all for your support and encouragement.
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