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!
Monday, January 27, 2014
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.
Monday, January 6, 2014
Dental billing issues
Here is some information specific for military retirees but could have applications for others. Part of the protocol for this type of cancer is to evaluate your dental health.
Many of the side effects of the treatment, especially the radiation, will adversely impact your teeth and jaw. Radiation kills stuff but some forms of bacteria can thrive in that environment. The negative effect on your salivary glands tends to cause dry mouth and that provides a perfect environment for tooth decay.
My oncologist referred me to the UNC dentist and I had an examination. The UNC dentist recommended getting a cleaning prior to starting treatment. The military retiree dental plan did not pay the claim. The plan only pays for two cleaning/examinations a year and I had already seen my normal dentist within six months. So I had two issues; how to pay the bill and how to get my teeth cleaned prior to treatment. Since cancer grounded me funds were tight and I filed an appeal with the dental insurance company. No joy. I contacted livestrong and they referred me to the Patient Advocate Foundation. They could not help pay but suggested that I contact one of the dental schools for a cleaning.
Issue one resolved. The community college in Sanford has a dental hygienist program. They provide free cleanings so the students can practice. It was reassuring that the student was nearing the end of the program and that they are supervised by a qualified instructor. Issue two was more of a challenge. I contacted my congressional representative’s office. After some time I received an answer:
“Mr. Moss, we have received a letter from Delta Dental which notes your recent cancer diagnosis and your associated insurance benefits. Tricare Dental cannot provide coverage for more than two dental cleanings in any 12 month period. However, Tricare did contact Tricare Management Activity (TMA) their DoD liaison and confirmed that you should have coverage for necessary dental care associated with cancer treatments through the adjunctive dental benefit which is included as part of your medical insurance. Adjunctive dental care is described as –
That dental care which is medically necessary in the treatment of an otherwise covered medical (not dental) condition is an integral part of the treatment of such medical condition or is required in preparation for, or as the result of, dental trauma which may be or is caused by medically necessary treatment of an injury or disease.
You can contact your Tricare representative as they should be expecting your case.”
This made sense. Finding the right people in the UNC dental billing bureaucracy to follow through was the final challenge. The point of this entry is to let cancer warriors know that resources exist to help. Get treatment. There are programs out there to help you pay for it. I was blessed to serve in the military until retirement. Our medical insurance and treatment is not “free for life” we pay monthly premiums, co-pays and have limits on treatment just like other folks. UNC has programs for low income patients including “charity care.” The livestrong foundation has contacts with many other organizations some of which have grants and loans to help people pay for treatment.
Many of the side effects of the treatment, especially the radiation, will adversely impact your teeth and jaw. Radiation kills stuff but some forms of bacteria can thrive in that environment. The negative effect on your salivary glands tends to cause dry mouth and that provides a perfect environment for tooth decay.
My oncologist referred me to the UNC dentist and I had an examination. The UNC dentist recommended getting a cleaning prior to starting treatment. The military retiree dental plan did not pay the claim. The plan only pays for two cleaning/examinations a year and I had already seen my normal dentist within six months. So I had two issues; how to pay the bill and how to get my teeth cleaned prior to treatment. Since cancer grounded me funds were tight and I filed an appeal with the dental insurance company. No joy. I contacted livestrong and they referred me to the Patient Advocate Foundation. They could not help pay but suggested that I contact one of the dental schools for a cleaning.
Issue one resolved. The community college in Sanford has a dental hygienist program. They provide free cleanings so the students can practice. It was reassuring that the student was nearing the end of the program and that they are supervised by a qualified instructor. Issue two was more of a challenge. I contacted my congressional representative’s office. After some time I received an answer:
“Mr. Moss, we have received a letter from Delta Dental which notes your recent cancer diagnosis and your associated insurance benefits. Tricare Dental cannot provide coverage for more than two dental cleanings in any 12 month period. However, Tricare did contact Tricare Management Activity (TMA) their DoD liaison and confirmed that you should have coverage for necessary dental care associated with cancer treatments through the adjunctive dental benefit which is included as part of your medical insurance. Adjunctive dental care is described as –
That dental care which is medically necessary in the treatment of an otherwise covered medical (not dental) condition is an integral part of the treatment of such medical condition or is required in preparation for, or as the result of, dental trauma which may be or is caused by medically necessary treatment of an injury or disease.
You can contact your Tricare representative as they should be expecting your case.”
This made sense. Finding the right people in the UNC dental billing bureaucracy to follow through was the final challenge. The point of this entry is to let cancer warriors know that resources exist to help. Get treatment. There are programs out there to help you pay for it. I was blessed to serve in the military until retirement. Our medical insurance and treatment is not “free for life” we pay monthly premiums, co-pays and have limits on treatment just like other folks. UNC has programs for low income patients including “charity care.” The livestrong foundation has contacts with many other organizations some of which have grants and loans to help people pay for treatment.
Wednesday, January 1, 2014
Motorcycle safety
One of the great joys in my life is motorcycling. I grew up riding bikes. My pop almost always had at least one motorcycle. The culture back then was much different. We only wore our “crash helmet” when we were planning on doing very risky stunts. Some of the coolest bikes of that era were “bar hoppers.” When I joined the air force I had to take the mandatory motorcycle safety class. In typical angry young man fashion my attitude was “these safety Nazis can’t teach me anything”, and they did not. Combat controllers use motorcycles especially during airfield seizures. Deploying the motorcycle with a parachute allows the assault force to have rapid mobility almost instantly. Great fun!
As an airman who owned a motorcycle I was a prime candidate to become the all terrain vehicle NCO. I enjoyed the responsibility. Maintaining our fleet of our two, three and four wheel machines was fun. I became frustrated that I had to fix machines that were wrecked because of poor riding technique. So I volunteered to go to the MSF instructor course. The sergeant may or may not take advice from the airman but they are likely to listen to a certified “instructor.” This time I actually paid attention and learned a lot. Leading by example meant that I had to wear all the gear all the time and not drink and ride…ever. This probably saved my life.
Over the next several years my role in the military changed and I did not teach motorcycle safety much. Near the end of my career I was recertified and learned of civilian training opportunities. The North Carolina community college system has several different courses including a basic rider course. Over a weekend students can learn how to ride. The motorcycles are provided and the training is split between classroom and riding. It can be great fun. People get to try out motorcycling in a low threat environment. There is an evaluation that assesses what they learned. Most of the students pass, many purchase motorcycles and begin the adventure. Not everyone passes and that is OK. Some of the riders should practice more before venturing on the open road and the feedback has value.
Opening the world of motorcycling to people is very satisfying. I love riding. It is a lot more fun if you don’t crash. Training and risk management increase your chances. I look forward to being healthy enough to return to coaching.
http://msf-usa.org
http://ncmotorcyclesafety.org/
As an airman who owned a motorcycle I was a prime candidate to become the all terrain vehicle NCO. I enjoyed the responsibility. Maintaining our fleet of our two, three and four wheel machines was fun. I became frustrated that I had to fix machines that were wrecked because of poor riding technique. So I volunteered to go to the MSF instructor course. The sergeant may or may not take advice from the airman but they are likely to listen to a certified “instructor.” This time I actually paid attention and learned a lot. Leading by example meant that I had to wear all the gear all the time and not drink and ride…ever. This probably saved my life.
Over the next several years my role in the military changed and I did not teach motorcycle safety much. Near the end of my career I was recertified and learned of civilian training opportunities. The North Carolina community college system has several different courses including a basic rider course. Over a weekend students can learn how to ride. The motorcycles are provided and the training is split between classroom and riding. It can be great fun. People get to try out motorcycling in a low threat environment. There is an evaluation that assesses what they learned. Most of the students pass, many purchase motorcycles and begin the adventure. Not everyone passes and that is OK. Some of the riders should practice more before venturing on the open road and the feedback has value.
Opening the world of motorcycling to people is very satisfying. I love riding. It is a lot more fun if you don’t crash. Training and risk management increase your chances. I look forward to being healthy enough to return to coaching.
http://msf-usa.org
http://ncmotorcyclesafety.org/
Subscribe to:
Posts (Atom)