Some Cancer Thoughts

[Art]

I hadn't posted about this much though a few on these forums do know my complete situation.

A year ago i was diagnosed with a rare situation, though not a rare cancer. I have advanced Thyroid cancer that had spread to the bones. A very rare situation. I know docs, though not cancer docs, who had never heard of thyroid cancer with bone metastisis. Fortunately I have a long standing relationship with MD Anderson Cancer Center in Houston, possibly the best hospital of its kind, due to another issue which has been resolved. My primary doctor at MD Anderson is an endocrinologist who was on the team that developed the only known treatment for my problem and wrote the monograph on it. Lucky me right :headbang:.

So basically I have an issue that isn't curable but is manageable at least until the drug they are using on me stops working. As a result, while I'm still sick, my ability to move around and enjoy life has improved a lot. An MD Anderson cardiologist I had to sit with early on told me that I had a good attitude going for me and his advice was to as much as possible "live your life" which only re inforced my attitude about the whole thing anyhow.

So what have I learned:

Get the best care available that you can afford. It makes a difference on a lot of levels. For example, My first bone biopsy was inconclusive but came back with a diagnosis of prostate cancer which I had been treated successfully for before. Very unusual for a guy whose PSA is undetectable. It only took them a week to correct that and find the real culprit but if the missed diagnoses had been followed up on and I'd been treated for prostate cancer I'd be in a fine pickle to say the least. Fortunately the staff there realised there was a problem with the initial diagnosis right away and did further tests (bone biopsy on a different site) to get it right.

Don't scrimp on insurance. I have Medicare part A&B and Federal Government Blue Cross Blue Shield. The Federal Blue Cross Blue Shield costs a hell of a lot more than your average gap plan (I pay about $6,500.00 a year in premiums) and doesn't pay more than they do but it got me into MD Anderson. MD Anderson is a part of the University of Texas System but has steadily whittled down the insurance plans they accept. In fact I understand they don't accept most insurance any more. Well everybody, and I mean everybody takes Fed. BC/BS. A huge proportion of MD Anderson patients are rich foreigners and self insured Americans who pay cash on the line. It annoys me that MD Anderson has become so restrictive on insurance, they are not a private hospital but part of the UT system which is part of the State of Texas. The result of my insurance situation is I haven't payed a dime out of pocket since I've been there. This is a very good thing since the insurance payout for the exotic oral chemo therapy I take was $144,000.00 for ten months. Now think of the fix I'd be in if I had even a 20% co pay :icon_e_surprised:.

Get your drugs from a pharmacy that has a Specialty Pharmacy operation within it starting now. The co pay for my chemo therapy drug from a non specialty formula would have been in the thousands of dollars. The MD Anderson pharmacist who called me told me my pharmacy (CVS) has a Specialty Pharmacy branch and that would cut the co pay to less than $100.00 which is, under the circumstances better than a sharp stick in the eye. Well it turned out my co pay was nothing which is a whole hell of a lot better than a sharp stick in the eye.

Stay in shape. Early on I lost a lot of weight and it was mostly muscle mass. Yup, no appetite. Well I got my self a dumb bell set and I use it. I big tumor on my hip and the tumors on my spine had me almost paralised but now thanks to MD Anderson's fabulous Physical Therapy department and some diligent exercise I've gone from barely mobile to being able to walk on my own though with quite a limp. Out of the house for short distances I'll use a cane and If I'm going to be moving more than 50 or 60 yards I still take "wonder walker." I'm phobic about falls and a fall that would shatter my extremely compromised left pelvis is a worse thought than any other possibility.

Be grateful for your friends. People who show up when you're real sick are a pearl beyond price.

This one is real important. Have a positive attitude. I wake up every morning and thank God for waking up and for being about 75% functional with bearable pain. This will make you better company and really does facilitate living your life to the best extent possible. I'm going trap shooting with our daughter on Tuesday, first time I'll have shot a shotgun since being sick. That's another milestone. I have hopes of going duck hunting with her (guided hunt of course) in January if I don't suddenly get sicker or hurt myself.

Realizing you have limited time can actually intensify the pleasure you have in the moment. Never forget that.

[Allen]

Good write up Art. Sorry you are going through this. For most of us aging does suck regarding sickness, pain and $ expense.

$144,000 for 10 months? Elvis couldn't afford that. I guess that is what is charged to hospitals, forcing our ins cost up so much.

Breaking a hip? Yep, you can't put a cast on it and as we age our bones get brittle. In most cases broken hips do not heal = yet more pain.

Good info.

Keep up the faith and optimism. All of us are here on "loan".

[Ken The Kanuck]

Good luck to you Art!!!

KTK

[barretcreek]

Thank you for sharing that.
Have lost two Girl Friends to cancer in the last couple years and third one is dealing with it now. Attitude and exercise are vital. Oncology based nutrition is WAY different than other dieting.
Keep at it Art.

[Art]

Thank you for sharing that. Oncology based nutrition is WAY different than other dieting.
Keep at it Art.

You've got that right. Getting enough calories and nutrients, and the right kind is a big deal. One thing that seems to help me is a supplement called Juice Plus. Its similar to the Balance of Nature that's hawked on TV (there are a bunch of other brands as well and all seem about equal) All are essentially vegitibles and fruits dried and powdered one way or another and encapsulated. Since we have a friend who is a Rep. for Juice plus that's the one I use. It sure isn't a complete the problem solver its marketed as and certainly no substitute for eating right, but it has seemed to help as a supplement in my case.

[lyman]

Art, great post,

and I for one am glad you are still here posting,



sadly, I type this after returning home from my Brother in Law's funeral,
he developed a very very aggressive myeloma type that despite Duke and Charlotte's best docs, whipped him,
gone at 54,

he would agree with you , get the best docs and insurance you can, and don't be afraid to ask questions and expect answers,

he was one of the most cheerful people I have ever met, and stayed that way till the end,

it truly does make a difference in your quality of life, regardless if you have an illness or not,

[rayg]

Art thanks for posting. The point you made about getting good doctors is so very important! My wife passed away from cancer almost three weeks ago after going through a bunch of doctors who were apparently not very competent where none of them discovered the serious cancer problem until finally the last one told us, Well you know she has stage four cancer! Now that's not one! two! or three! but stage four cancer. Talk about a shock! Sadly she only lasted about a month after that. I believe that if we had had more qualified doctors in the beginning, she would still be alive! I agree get the best doctor's, Ray

[RED]

Thanks Art. I am 78 and I have a very long list of people that lived life a lot more healthy than me. Two of them were very successful in life. I went to high school with them and both were very athletic and healthy. One went through college on a athlete scholarship, went through AF ROTC, flew over 250 combat missions in a F-4 over North Vietnam, and retired as a General. He never smoked or drank and died of a stroke at 67. Another buddy was a All Star athlete but dropped out of college after 2 years. He wound up a banker and worked up as President of a very large bank. Again a very healthy guy that died from cancer.

My brother in law died of stroke at 67 and sister died with COPD at 61, my oldest son died in a accident at 57.

Me? I, smoked a pack a day for 30 years and drank too much for 50 years and still am fairly healthy and enjoying life. My health problems are with my skeleton and acute osteoarthritis two knees, both shoulder replacements and two fused lumbar vertebra plus a burst L5 fracture. I have to use a rolling walker and a walking stick but I can still drive and live by myself. I am also still laughing and enjoying every day!

[Vern Humphrey]

I'm 81. My mother was a heavy smoker and died at 51 of breast cancer -- which has a statistical connection with smoking. When I was little, I remember her telling a friend that I had had 13 colds in 6 months and she couldn't figure out why! She and both my grandparents smoked and I lived in a house full of smoke!

I've avoided excess salt and in the last decade or two many other things "not recommended" for a healthy life.

I can hike 5 miles a day, and drive myself wherever I want to go.

[lyman]

I'm 81. My mother was a heavy smoker and died at 51 of breast cancer -- which has a statistical connection with smoking. When I was little, I remember her telling a friend that I had had 13 colds in 6 months and she couldn't figure out why! She and both my grandparents smoked and I lived in a house full of smoke!

I've avoided excess salt and in the last decade or two many other things "not recommended" for a healthy life.

I can hike 5 miles a day, and drive myself wherever I want to go.

my grandmother smoked Lucky Strick (LSMFT!) from 13 yrs till she had a stroke in her late 60's, then quit for a few years and started back just before she died at 80
she did well recovering from the stroke, but Breast/Lung cancer took her out,

I can remember her entertaining some of her old friends, all 3 lighting up over and over, and the ceiling seemed to get lower by the hour (from the smoke,,,)

she smoked about a carton a week,

[Allen]

my grandmother smoked Lucky Strick (LSMFT!) from 13 yrs till she had a stroke in her late 60's, then quit for a few years and started back just before she died at 80
she did well recovering from the stroke, but Breast/Lung cancer took her out,

I can remember her entertaining some of her old friends, all 3 lighting up over and over, and the ceiling seemed to get lower by the hour (from the smoke,,,)

she smoked about a carton a week,

Before cancer awareness came about smoking was a way of life and pretty much stressed as part of being normal. ALL cars had (many still do) ashtrays and cigarette lighters. ALL restaurants had ashtrays right on the table. ALL hotels had ashtrays and most had complementary matches. There was no such thing as a smoking and non-smoking area. Prior to the 80's-90's or so a person had to go outside to get away from inside cigarette smoke. Asking someone to not smoke or back away was considered an insult to many as they thought it was their right to smoke no matter what.

My wife and many other women complained about having to breath smoke all day in office buildings then come home with their long hair smelling like smoke and having to wash it every day just to get rid of the odor.

My brother, 4 years older than me has had mouth cancer. His surgery involved removing skin inside his mouth under his tongue. His speech has never been the same since and over time has gotten worse to the point he is very hard to understand. He get's pissed off when people try to talk to him and phone conversation is unbearable. I don't know if he get's mad at those that can't communicate with him or if he is mad at himself but bottom line is he's no fun to be around.

To this day he still denies smoking had anything to do with it and still smokes. I realize it is a difficult habit to quit but when things get this bad you have to say "you can't fix stupid".

[Vern Humphrey]

Before cancer awareness came about smoking was a way of life and pretty much stressed as part of being normal. ALL cars had (many still do) ashtrays and cigarette lighters. ALL restaurants had ashtrays right on the table. ALL hotels had ashtrays and most had complementary matches. There was no such thing as a smoking and non-smoking area. Prior to the 80's-90's or so a person had to go outside to get away from inside cigarette smoke. Asking someone to not smoke or back away was considered an insult to many as they thought it was their right to smoke no matter what.

My wife and many other women complained about having to breath smoke all day in office buildings then come home with their long hair smelling like smoke and having to wash it every day just to get rid of the odor.

My bother, 4 years older than me has had mouth cancer. His surgery involved removing skin inside his mouth under his tongue. His speech has never been the same since and over time has gotten worse to the point he is very hard to understand. He get's pissed him off when people try to talk to him and phone conversation is unbearable. I don't know if he get's mad at those that can't communicate with him or if he is mad at himself but bottom line is he's no fun to be around.

To this day he still denies smoking had anything to do with it and still smokes. I realize it is a difficult habit to quit but when things get this bad you have to say "you can't fix stupid".

I had a friend who was undefeatable -- he could do anything he set out to do. Except give up smoking.
i
Now we have people who want to legalize "recreational marijuana" and think it won't hurt because it's "natural." Tobacco is "natural," too -- and sucking smoke into your lungs is stupid, no matter what you're smoking.

[Mark in Ottawa]

Thank you for posting. A lot of food for thought.