I've done this blog so that others with the misfortune to get a Stage 4 head and neck cancer have an expectation of what they're facing and a first-hand report of what I've encountered as a survivor.
At one point in my treatments, my doctor asked my wife how far they should go to save my life. My wife told them to do everything possible to keep me living. My wife and I have had many conversations about that. There are times when both of us question whether her decision was best. I deal with quality of life issues. My wife sees what I go through and wonders whether just letting me go would have been better for me.
I've got to keep finding things that look forward and are things I can accomplish. A lot of my past is now permanently in the past. That's tough to deal with. I've battled depression and then additional depression when things I try to add to my life to replace things I've lost are difficult to assimilate.
Every individual's response to cancer treatments is unique, but I think I can give this universal advice: When your doctor and physical therapist tell you to get some exercise, that is probably the best advice you will get about your recovery.
I did a lot of walking. I got my walking stamina up to the 2 hour range at a pretty brisk pace. Then I went back to work and "didn't have time" to keep up the walking. Getting back to work was about the most important thing in my mind for recovering from my cancer. I wanted to get back to a "normal" life and getting back to work was my most important goal I had.
A better goal would have been to return to work and maintain an exercise regimen. I had a desk job and physically inactive employment may require an exercise program during recovery.
Thursday, July 14, 2011
Wednesday, July 13, 2011
Unemployment Is Now Official
I gave up on appealing Short Term Disability denials. I had one remaining. My former employer told me they had no option but to begin looking for my replacement. They encouraged me to apply for any openings where I had qualifications.
I've been cleared to return to work, but the specs for my former spot have been changed and I'm no longer qualified for that position. At my age, my best chance of getting a job based on my experience is with my former employer, but they're suffering from the economic slowdown and are trying to reduce employment. Employees are staying because there aren't places they can go. There's an exception to that. It seems that 100% of the local HR employees left and took jobs with the casino that's opening up about 15 miles south of Wichita.
My hunt for medical insurance worked out better than I expected. I was expecting to pay around $1,000 a month for myself and my wife. $12K a year was about what I could handle, but copays could have raised that amount and anything catastrophic with a copay would have forced me to take a mortgage while I'm on a fixed income that doesn't cover my monthly expenses.
I found an interesting policy through Coventry Health Systems. It' a $2,500 deductible for me and a $2,500 deductible for my wife. After that everything is paid 100%. My wife and I both have excellent health and Coventry doesn't have a huge penalty for squamous cell carcinoma. My rate will be in the $600 - $650 range monthly. That monthly amount plus my paying the first $2,500 for myself and for my wife works for me.
I've been cleared to return to work, but the specs for my former spot have been changed and I'm no longer qualified for that position. At my age, my best chance of getting a job based on my experience is with my former employer, but they're suffering from the economic slowdown and are trying to reduce employment. Employees are staying because there aren't places they can go. There's an exception to that. It seems that 100% of the local HR employees left and took jobs with the casino that's opening up about 15 miles south of Wichita.
My hunt for medical insurance worked out better than I expected. I was expecting to pay around $1,000 a month for myself and my wife. $12K a year was about what I could handle, but copays could have raised that amount and anything catastrophic with a copay would have forced me to take a mortgage while I'm on a fixed income that doesn't cover my monthly expenses.
I found an interesting policy through Coventry Health Systems. It' a $2,500 deductible for me and a $2,500 deductible for my wife. After that everything is paid 100%. My wife and I both have excellent health and Coventry doesn't have a huge penalty for squamous cell carcinoma. My rate will be in the $600 - $650 range monthly. That monthly amount plus my paying the first $2,500 for myself and for my wife works for me.
Wednesday, June 29, 2011
Cancer Fatigue
Cancer Fatigue is a kinda nasty side effect of treatment for cancer. I was told that I might experience some loss of stamina and have some weakness after my treatments. That's pretty easy to ignore. What I actually experienced wasn't so easy to ignore.
Cancer fatigue seems to defy logic. It would seem logical that not exerting a lot of energy would save stamina, but that's not how it works. I have to be physically active for at least half an hour every couple of hours or I run out of gas and can't stay awake without coffee or something similar.
The job I used to have was a desk job where I wrote SQL computer instructions. That's a desk job that requires a lot of focus and concentration. That didn't work out well with cancer fatigue.
My application for Short Term Disability insurance has been denied, so I've lost my job, since I've been off work a couple of months while I'm concentrating on building up some stamina.
I'm starting to think that cancer fatigue can be controlled, but not cured. In the last 4 months I've only had 4 days where I was able to stay awake for 12 or more consecutive hours. I suspect I could be doing better if I had a rigorous exercise schedule, but I'm 62 and I've never required a rigorous exercise schedule. Changing life patterns after 60 years is not easy.
I've lost my job, which means I have to cover my own insurance without an employer contributing. Decent insurance for me and my wife is about $1,000 a month. I guess I should count my blessings for having things set up to where I think I can handle that until I'm eligible for Medicare and my wife is eligible for Social Security.
Cancer fatigue seems to defy logic. It would seem logical that not exerting a lot of energy would save stamina, but that's not how it works. I have to be physically active for at least half an hour every couple of hours or I run out of gas and can't stay awake without coffee or something similar.
The job I used to have was a desk job where I wrote SQL computer instructions. That's a desk job that requires a lot of focus and concentration. That didn't work out well with cancer fatigue.
My application for Short Term Disability insurance has been denied, so I've lost my job, since I've been off work a couple of months while I'm concentrating on building up some stamina.
I'm starting to think that cancer fatigue can be controlled, but not cured. In the last 4 months I've only had 4 days where I was able to stay awake for 12 or more consecutive hours. I suspect I could be doing better if I had a rigorous exercise schedule, but I'm 62 and I've never required a rigorous exercise schedule. Changing life patterns after 60 years is not easy.
I've lost my job, which means I have to cover my own insurance without an employer contributing. Decent insurance for me and my wife is about $1,000 a month. I guess I should count my blessings for having things set up to where I think I can handle that until I'm eligible for Medicare and my wife is eligible for Social Security.
Tuesday, June 07, 2011
Social Security at 62
I've lost two friends from this disease since I heard the words, "You have cancer". Both were in the age range where this information was relevant.
I applied for Social Security today. Taking it early, I get 75% of what I would have gotten had I waited until I was 66. Yep, 66, not 65. The age is being raised.
If I was going to get $1,000 a month, I'll get $750. In 4 years, I would collect $36,000. When I'm 66, I will get $250 less every month. $250 a month takes 144 months (12 years) to reach $36,000. I would be 78 before my total receipts from Social Security would be the same whether I had taken the smaller amount earlier or the larger amount later. That's not calculating the difference in value between receiving money today as opposed to receiving it later.
Financial advisers recommend taking SS early even if it's not needed. Invest it. There's an option at age 70 where you can change your mind and reapply for the monthly amount you'd get if you had waited that long to apply. You have to pay back the money you've already received, but there's no interest charged.
So, invest the money you get from 62 to 70 if you don't need it. Pay it back at 70 and keep the interest you've earned on it. Then you get the monthly payment you would have gotten had you waited until 70 to apply for SS.
An interesting link I found on the Social Security website was "Instructions For The Blind".
I applied for Social Security today. Taking it early, I get 75% of what I would have gotten had I waited until I was 66. Yep, 66, not 65. The age is being raised.
If I was going to get $1,000 a month, I'll get $750. In 4 years, I would collect $36,000. When I'm 66, I will get $250 less every month. $250 a month takes 144 months (12 years) to reach $36,000. I would be 78 before my total receipts from Social Security would be the same whether I had taken the smaller amount earlier or the larger amount later. That's not calculating the difference in value between receiving money today as opposed to receiving it later.
Financial advisers recommend taking SS early even if it's not needed. Invest it. There's an option at age 70 where you can change your mind and reapply for the monthly amount you'd get if you had waited that long to apply. You have to pay back the money you've already received, but there's no interest charged.
So, invest the money you get from 62 to 70 if you don't need it. Pay it back at 70 and keep the interest you've earned on it. Then you get the monthly payment you would have gotten had you waited until 70 to apply for SS.
An interesting link I found on the Social Security website was "Instructions For The Blind".
Tuesday, May 31, 2011
Work Status Report
This is the email I sent to HR, my supervisor, and a coworker. It explains my current situation pretty well.
I'm making great progress. Energy levels and attitude are greatly improved, but I had a long ways to go. This is a process, and not a quick fix.
FMLA was approved last week. It expires June 6. Short Term Disability is still being decided. There's supposed to be a decision this week. I'm confident it will be approved. If it is approved, it is scheduled for review in July. My oncologist thinks September is a realistic time frame for recovery. He wants to review my status in July, so that is the time frame for the STD claim right now. The review in July will determine if an extension to the STD is requested.
I expect I will have a permanent need to get regular exercise. To return to a normal work schedule, I will have to be able to get an hour of exercise daily in addition to working. I was struggling to stay awake on my 10-minute drive home from work. Going to a gym was completely out of the question.
I'd like to say a special thanks to Drew. Drew said he'd have me in his prayers and I believe it was his prayers that led me to this course of action, which is literally saving my life.
The rest of this is my current condition. From a professional standpoint, it is not vital information, and you may stop reading at this point if you are only interested in the date of my potential return to work.
The first weekend after I took PTO, I was only able to wake up for meals and maybe an hour before or after a meal. That was pretty alarming. One day a weekend had been that way for a while, but not both. That led me to set up unscheduled visits with my cancer specialists. That was difficult on short notice and some "penciled in" appointments didn't work out. I think the extra day of inability to stay awake was God's way of telling me to get some help. Thanks for your prayers, Drew.
The doctors were alarmed. If fatigue and energy levels get worse, cancer fatigue is progressive. Any progression past only waking for meals for an entire weekend is borderline invalid and certainly eliminates the ability to work a normal work week. The progression has the body slowly shutting down and is terminal. I was probably in the range of 3 years of survival and less than a year of being able to attend work. That's "attend" - not perform anything useful.
When I mowed my lawn, I realized my energy levels had deteriorated significantly from last fall. It bordered on "drastic" instead of "significant".
When I first took PTO, I checked how long I could stay awake when not in a work situation. The limit was 5 hours from waking until falling asleep. That's not feeling tired and taking a nap. That's falling asleep and falling out of a chair while trying to do things at a computer. At work, I was getting coffee when I felt that coming on. I was staying awake only from the caffeine. That includes coffee in the afternoons, which kept me awake late at night and added sleep deprivation to everything else going on.
Something I've figured out about cancer fatigue is that no one wants to admit they've got it. Everyone wants to think they're getting better and can handle their situation. Admitting you're fatigued, exhausted, or tired is seen by others as laziness or seeking sympathy for "I had cancer". That leads to denial - and that denial can be the final straw in losing a battle against cancer.
Aetna has me in a wellness program where I get a call from a counselor every two weeks. She checks on my progress and wants to know details of what I'm doing to get the exercise I need. The Mayo Clinic has kept me in their trial studying ginseng as something to add to recovery from cancer fatigue. My primary doc found some hormone levels that need adjustment and affect energy and attitude levels. That is being addressed and showing good results.
Between the Aetna wellness program and the Mayo trial, I have people checking my attitude about once a week. In March I was at about an overall 2 (out of 10). I'm running at about 7 on my overall attitude about things now.
I'm making great progress. Energy levels and attitude are greatly improved, but I had a long ways to go. This is a process, and not a quick fix.
FMLA was approved last week. It expires June 6. Short Term Disability is still being decided. There's supposed to be a decision this week. I'm confident it will be approved. If it is approved, it is scheduled for review in July. My oncologist thinks September is a realistic time frame for recovery. He wants to review my status in July, so that is the time frame for the STD claim right now. The review in July will determine if an extension to the STD is requested.
I expect I will have a permanent need to get regular exercise. To return to a normal work schedule, I will have to be able to get an hour of exercise daily in addition to working. I was struggling to stay awake on my 10-minute drive home from work. Going to a gym was completely out of the question.
I'd like to say a special thanks to Drew. Drew said he'd have me in his prayers and I believe it was his prayers that led me to this course of action, which is literally saving my life.
The rest of this is my current condition. From a professional standpoint, it is not vital information, and you may stop reading at this point if you are only interested in the date of my potential return to work.
The first weekend after I took PTO, I was only able to wake up for meals and maybe an hour before or after a meal. That was pretty alarming. One day a weekend had been that way for a while, but not both. That led me to set up unscheduled visits with my cancer specialists. That was difficult on short notice and some "penciled in" appointments didn't work out. I think the extra day of inability to stay awake was God's way of telling me to get some help. Thanks for your prayers, Drew.
The doctors were alarmed. If fatigue and energy levels get worse, cancer fatigue is progressive. Any progression past only waking for meals for an entire weekend is borderline invalid and certainly eliminates the ability to work a normal work week. The progression has the body slowly shutting down and is terminal. I was probably in the range of 3 years of survival and less than a year of being able to attend work. That's "attend" - not perform anything useful.
When I mowed my lawn, I realized my energy levels had deteriorated significantly from last fall. It bordered on "drastic" instead of "significant".
When I first took PTO, I checked how long I could stay awake when not in a work situation. The limit was 5 hours from waking until falling asleep. That's not feeling tired and taking a nap. That's falling asleep and falling out of a chair while trying to do things at a computer. At work, I was getting coffee when I felt that coming on. I was staying awake only from the caffeine. That includes coffee in the afternoons, which kept me awake late at night and added sleep deprivation to everything else going on.
Something I've figured out about cancer fatigue is that no one wants to admit they've got it. Everyone wants to think they're getting better and can handle their situation. Admitting you're fatigued, exhausted, or tired is seen by others as laziness or seeking sympathy for "I had cancer". That leads to denial - and that denial can be the final straw in losing a battle against cancer.
Aetna has me in a wellness program where I get a call from a counselor every two weeks. She checks on my progress and wants to know details of what I'm doing to get the exercise I need. The Mayo Clinic has kept me in their trial studying ginseng as something to add to recovery from cancer fatigue. My primary doc found some hormone levels that need adjustment and affect energy and attitude levels. That is being addressed and showing good results.
Between the Aetna wellness program and the Mayo trial, I have people checking my attitude about once a week. In March I was at about an overall 2 (out of 10). I'm running at about 7 on my overall attitude about things now.
Monday, May 23, 2011
Goodbye, Lanny
A good friend of mine was diagnosed with squamous cell carcinoma last fall. He passed away Saturday. Lanny and his wife, Vicki, were two people you just wanted good things to happen to. They enjoyed life and made those around them enjoy life, too. Anybody who knew Lanny is going to miss him being around. My thoughts, prayers, and sympathy are with Vicki. She's got a difficult path ahead of her.
I had a pretty lengthy conversation with Lanny in January. His surgery had healed well, wasn't overly extensive, and he was about ready to start chemo and radiation.
He said one thing that alarmed me. His cancer wasn't completely removed in his surgery and was spreading while he was waiting to heal enough to start further treatments. That's a bad sign. I didn't say anything, but he and Vicki had read this blog. I believe they knew what that meant.
Lanny's cancer wasn't in remission after his chemo and radiation, so he was getting a second round of chemo. A second round of chemo has to be a tough decision. It's the only chance at survival, and it's a small chance. From my experience with one round of chemo, I would expect some quality of life issues with a second round.
Lanny is in a better place. I'm sad to see him gone and I will miss him till the day I die. I'm glad he didn't have to suffer for years on his way to his final destination. Rest in peace, my friend.
I had a pretty lengthy conversation with Lanny in January. His surgery had healed well, wasn't overly extensive, and he was about ready to start chemo and radiation.
He said one thing that alarmed me. His cancer wasn't completely removed in his surgery and was spreading while he was waiting to heal enough to start further treatments. That's a bad sign. I didn't say anything, but he and Vicki had read this blog. I believe they knew what that meant.
Lanny's cancer wasn't in remission after his chemo and radiation, so he was getting a second round of chemo. A second round of chemo has to be a tough decision. It's the only chance at survival, and it's a small chance. From my experience with one round of chemo, I would expect some quality of life issues with a second round.
Lanny is in a better place. I'm sad to see him gone and I will miss him till the day I die. I'm glad he didn't have to suffer for years on his way to his final destination. Rest in peace, my friend.
Monday, May 16, 2011
Cancer Fatigue
I'm clean for a little over 2 years now. It's been 18 months since I finished chemo and radiation. I'd swear I'm still gaining more scar tissue in my neck. Radiation is the "gift that keeps on giving". I think I've lost some bone mass in my lower right jaw. Tooth loss is considered normal after the treatment I had, and I've got a big molar that's loose.
Cancer fatigue is the nastiest of the side effects still hitting me. They told me I would lose some stamina and energy, but there is no way I was prepared for what I've encountered.
One of the big problems with fatigue is that everyone gets tired, everybody deals with fatigue, and at no time did I want to admit that I wasn't recovering to anywhere near my former self in this area. In the range of 2 years after my initial surgery, the fatigue issue is seen by some as relying on excuses and going for sympathy because "I had cancer".
At some point in the recovery process, there's a crossroads. Probably every chemo and radiation patient gets cancer fatigue, but the long-term results are determined a ways down the road. In my case, I suspect it was around 12 months after my radiation was finished. The crossroads is that you either continue gaining stamina and endurance, or it swings the other way.
Mine hit the point where I once spent both weekend days sleeping, except for waking up for meals. That wasn't my intention. The perception of others is that I was lazy and using my previous disease as an excuse for a lack of effort.
That's when I realized my fatigue problem was getting worse instead of better. I set up unscheduled visits with both my doctors. They were unanimous and adamant. I had to get some exercise and it was critical to do it immediately.
That was a problem. It was everything I could do to stay awake at work. I had to concentrate on staying awake on the drive home from work. I was typically asleep within 20 minutes of getting home, unless I was so wired on coffee from work that I couldn't sleep.
During conversations with my doctors, I learned that cancer fatigue is progressive. If it takes a turn for increasing, it keeps going that way. Whoa! I had already hit sleeping an entire weekend, except for meals. Past that gets pretty ugly.
Doctors told me that if I didn't have the energy to exercise and work, then I had to quit work and get some exercise. Exercise is the only known remedy for cancer fatigue. We're talking huffing and puffing levels of exercise.
On March 10, I stopped working and started exercising. I applied for medical disability. So far, that's been refused. Too tired to work doesn't seem to be a medical condition that officially causes a disability, even if a doctor explicitly says, "you have to quit work and get some exercise".
When I stopped drinking coffee to stay awake and got into a relaxed environment, I discovered I was not capable of staying awake more than about 5 hours. I tried it sitting at a computer while doing something entertaining, instead of work. I literally fell asleep and fell out of my chair after about 5 hours of being awake.
I've made a lot of progress in 2 months, but there's a huge amount yet to go. In two months, the longest I've been able to stay awake has been 13 hours (I did that twice) and 16-1/2 hours (I did that once). All three of those led to 2 days following that I couldn't get past the 5-hour mark without some sleep.
The fatigue levels rise and fall without apparent reason. When the fatigue was really bad, I was too tired to eat. I did not have the energy to chew and swallow food. That led to even more fatigue. The real problem was that if I told anyone, they immediately thought I was just trying to gain sympathy for being a cancer survivor.
If you think this could lead to problems at work - BINGO! - you are a winner. When I first noticed a fatigue problem (around September, 2010), I checked with HR to see if there was anything available that might get me some time off to deal with the problem. That resulted in a closed door meeting with my supervisor and his chosen witness. The word "termination" was used repeatedly. The phrase, "you must contact HR immediately and stop this" was the "only way I could save my job".
Now I'm pursuing a medical leave. Wanna make any guesses on how well I will be received when I go back to work?
Cancer fatigue is the nastiest of the side effects still hitting me. They told me I would lose some stamina and energy, but there is no way I was prepared for what I've encountered.
One of the big problems with fatigue is that everyone gets tired, everybody deals with fatigue, and at no time did I want to admit that I wasn't recovering to anywhere near my former self in this area. In the range of 2 years after my initial surgery, the fatigue issue is seen by some as relying on excuses and going for sympathy because "I had cancer".
At some point in the recovery process, there's a crossroads. Probably every chemo and radiation patient gets cancer fatigue, but the long-term results are determined a ways down the road. In my case, I suspect it was around 12 months after my radiation was finished. The crossroads is that you either continue gaining stamina and endurance, or it swings the other way.
Mine hit the point where I once spent both weekend days sleeping, except for waking up for meals. That wasn't my intention. The perception of others is that I was lazy and using my previous disease as an excuse for a lack of effort.
That's when I realized my fatigue problem was getting worse instead of better. I set up unscheduled visits with both my doctors. They were unanimous and adamant. I had to get some exercise and it was critical to do it immediately.
That was a problem. It was everything I could do to stay awake at work. I had to concentrate on staying awake on the drive home from work. I was typically asleep within 20 minutes of getting home, unless I was so wired on coffee from work that I couldn't sleep.
During conversations with my doctors, I learned that cancer fatigue is progressive. If it takes a turn for increasing, it keeps going that way. Whoa! I had already hit sleeping an entire weekend, except for meals. Past that gets pretty ugly.
Doctors told me that if I didn't have the energy to exercise and work, then I had to quit work and get some exercise. Exercise is the only known remedy for cancer fatigue. We're talking huffing and puffing levels of exercise.
On March 10, I stopped working and started exercising. I applied for medical disability. So far, that's been refused. Too tired to work doesn't seem to be a medical condition that officially causes a disability, even if a doctor explicitly says, "you have to quit work and get some exercise".
When I stopped drinking coffee to stay awake and got into a relaxed environment, I discovered I was not capable of staying awake more than about 5 hours. I tried it sitting at a computer while doing something entertaining, instead of work. I literally fell asleep and fell out of my chair after about 5 hours of being awake.
I've made a lot of progress in 2 months, but there's a huge amount yet to go. In two months, the longest I've been able to stay awake has been 13 hours (I did that twice) and 16-1/2 hours (I did that once). All three of those led to 2 days following that I couldn't get past the 5-hour mark without some sleep.
The fatigue levels rise and fall without apparent reason. When the fatigue was really bad, I was too tired to eat. I did not have the energy to chew and swallow food. That led to even more fatigue. The real problem was that if I told anyone, they immediately thought I was just trying to gain sympathy for being a cancer survivor.
If you think this could lead to problems at work - BINGO! - you are a winner. When I first noticed a fatigue problem (around September, 2010), I checked with HR to see if there was anything available that might get me some time off to deal with the problem. That resulted in a closed door meeting with my supervisor and his chosen witness. The word "termination" was used repeatedly. The phrase, "you must contact HR immediately and stop this" was the "only way I could save my job".
Now I'm pursuing a medical leave. Wanna make any guesses on how well I will be received when I go back to work?
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