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Meaning of life

"The meaning of life is to find your gift. The purpose of life is to give it away." ~ Pablo Picasso

Thursday, August 1, 2013

LIFE KEEPS GETTING IN THE WAY OF ME DYING!

TODAY I MADE MY FINAL PAYMENT TO MD ANDERSON CANCER CENTER for saving my life and most of you will be sorry for the rest of YOUR life! It's like paying off a house! When you do that you have a mortgage burning party...what do I burn for this occasion??? :-)~

NO I don't condone smoking...just thought it was a funny photo

BILLS, BILLS, BILLS

When the bills begin to pile up and all you want to do is survive...what do you do? I have met so many people who struggle with paying medical bills while trying to live a comfortable life in the process. Most hospitals and some doctors will allow a reasonable payment program to be set up giving you the opportunity to make a fixed monthly payment. Be proactive about this and don't wait until you start receiving collection notices. But when life saving services run into the hundreds of thousands of dollars like mine and you still have a 30% co-pay, you could be faced with an amount equivalent to a house payment.

For this reason even people who have good health insurance are forced into bankruptcy just to stay alive. Sometimes the entire family ends up sucked into this downward spiral at the darkest hour. I've met a few who have had to do this and I often wonder what I would do in that situation. For me, so far, I've been lucky. I have the resources and the access to some of the best medical care available. And as I pay off one hospital, I continue to incur more debt in the next. Even when you are considered cancer free, there is still some maintenance with a watch and wait protocol as well as other lingering problems associated with treatment. There are things I need (or want) that I'm not able to have because of the mounting debt I've incurred, but I'm one of the lucky ones who has the resources to stay ahead.

As I look around the house I realize how much I let go, because I was just too sick to care or was too afraid to spend any money, so I wouldn't lose my home if things got really tough. YES, I can be a tightwad...I prefer the term "frugal" thank you very much! Perhaps I shouldn't have worried so much about not getting things done, but when the roof starts leaking, the house hasn't been painted in over a decade, a second car that hasn't run in over 3 years is sitting in the driveway, and you're sleeping on a 30 year old lumpy mattress, it's probably time to get motivated. Because I've seen the financial devastation of others along the way I can't help but worry. I started my career early, made a lot of money, and invested well. My life was planned out so that by the time I was 50, (2 years ago) I could do anything I wanted in comfort.

I was going to travel, see the world, and set up a foundation to help others in need. I had two great ideas. I wanted to create a hospital camouflaged as a dude ranch, run like a vacation resort, for terminally ill patients providing one last positive family memory and a non-profit restaurant chain that could sustain itself financially providing housing, jobs, and food, for the homeless. (Another blog for another day) As most do, I planned the perfect life. For some it's only a dream, but for me it was happening, I worked hard and it looked like nothing was going to stop me. But as what happens with most dreams, reality slaps you upside the head and you snap out of it. Failed heath put the brakes on faster than I ever knew possible.

My father used to say, "If you have your health, you have everything." I never paid attention to that because I was very healthy my whole life until one day in my early 30's that all ended and life became more difficult. I didn't plan well in the event of a medical setback. Who really thinks about that when you're young? My business wasn't set up to run without me and I wasn't smart enough (or too cheap frugal) to put all the insurances in place in the event I lost my income. My father used to also say, "You can be insurance poor if you over insure, so choose wisely." My problem is, I didn't choose much at all. According to the Social Security Administration: "Studies show that just over 1 in 4 of today's 20 year-olds will become disabled before reaching age 67."

There are programs like AFLAC, mortgage disability insurance, and long term disability insurances that are available, but good luck qualifying after you're diagnosed with a severe illness. Fortunately for me I had several business that provided me the income not to worry too much about not having those extra coverages. Although if they were in place, I would not have had to dramatically alter my lifestyle. However, by the time I was 38, it became obvious I was no longer able to continue the fast paced life I was leading, working 16 hour days and wearing several hats in the process. My health was failing and I knew I had to sell everything and downsize in order to survive and maintain a comfortable life. This was a pivotal financial move I had to make or I would have gone into bankruptcy for sure. The dreams of traveling the world came to an end. The hunger to give back and set up a foundation to help those in need sadly vanished as I became one of those in need.

REMEMBERING THE FALLEN

My life now is not at all what I expected or planned for, but I'm alive. When I look at others who lost their life to cancer, I get angry. I truly believe that if I didn't have a team of lawyers and accountants guiding me, access to the best doctors across the country and have the resources to pay them, even with health insurance, I would not be here. I often think of a fellow tongue cancer patient, John who posted here regularly before one day he didn't return my email.

John was a very entertaining fellow. He had a quick wit and a caring soul. He used to make me laugh because he would email me recipes for biscuits and cookies. I would think to myself, "I'm on a feeding tube just like you. What the hell am I supposed to do with a Snickerdoodle recipe?" He was always upbeat even when sharing his darkest fears. He even took the time to share his greatest accomplishments as he battled his enemy. Sometimes we don't appreciate the little things in life, and we take something as simple as swallowing for granted, but to a man that lost his tongue to cancer as John did, it's the greatest feat in the world. Because of my similar journey, I understand. This email from John's shares one of his greatest accomplishments during his battle:

"Is the doctor in?

Well, At 6:15 this AM I was able to swallow water for the first time in over 8 weeks.  Now it is only little tiny bits of water. Nothing like what you all can swallow.  BUT, I'll take it.  for the first time in a long time, my throat feels moistened.  When I took some water into my mouth and tilted my head back, I swallowed. I could feel the water go all the way down,  from the back of my throat to the bottom of the belly.  Man I tell you, the things we all take for granted. 

 Just thought I would share, 
 JR"

John was a hard working man, lived in Indiana, did not have a large income, and no savings. He exhausted his insurance and was unable to continue to pay his premiums. He was on a feeding tube and was unable to afford the life sustaining liquid formula he required, the same that I was on for over two years. This canned formula was about $36 a case and he needed a minimum of six cases a month. Typically Medicare (or Medicaid) will pay for this IF you're already on the program. Unfortunately for John, he was already on his feeding tube after his tongue was surgically removed still trying to work his way into the Medicaid system after being rejected once or twice. He waited too long to begin the paperwork and he didn't have the resources to pay the mounting debt he was incurring.

One of his last emails still resonates with me. He was trying to stay in good spirits. John was a real trouper, but he really was scared and financially destitute. He was contemplating hiring a disability attorney to get his Medicaid coverage. Every ounce of his energy was used to hang on to life, he no longer had the energy to battle the paperwork too. When he told me he couldn't afford his formula, I was infuriated. Yes, he should have started the disability paperwork sooner, but when you think you will get better and you're just too exhausted to even worry it, things slide. But there is no reason why a person should have to starve because of paperwork when he obviously qualified for assistance! I was so angry!  I sent John four cases of formula and a case of pouches (required to pour the formula into) just to get him by. I never heard from him after that.

One day I got an email from a relative thanking me for my kindness and telling me of John's passing. I never met the man, but I mourned his loss as though he was my brother. I can't even write this without crying because in my mind he didn't have to die.

 I carry with me a lot of survivor's remorse. There are so many such people from around the world I have met through this blog and sitting around in hospital waiting rooms who are no longer with us and I ask myself..."What have I done differently to still be breathing?" The standing family joke is...God doesn't want me because he's afraid I'll takeover and reorganize the place! A fair assumption.

Had I not been surrounded by the right people with the resources to afford the level of care I needed, I would be having dinner with John right now. I try so hard to live a good life, to respect the fact that I'm still here for some reason, to make others happy and laugh and give back the very best I can. I love giving small gifts of appreciation just to see others smile. I enjoy engaging in conversation to help others see life from a different perspective in an effort to make them think and become better people. I know I'm so fortunate that I'm still on this rock to do so and yet there just seems to be something missing...a sadness that looms overhead.

 I've had a great life even if it didn't work out as planned, but more importantly I still have a life! I only wish there was more I could do. I think I mourn the fact that I will probably never see all that this world has to offer. I have always had a hunger for knowledge and new experiences. Unfortunately, lately those new experiences have been mostly shrouded in the medical arena. Perhaps I'm just bored, maybe a little depressed, and still feeling useless. But it's time to get those projects done before the house falls down around me. Life just keeps getting in the way of me dying!

Peace B

JOHN'S HEAVENLY RECIPES

Snickerdoodles

These cookies will be the perfect slightly crunchy on the outside rim and chewy in the center. I have worked on this recipe for one year off and on.  This is exactly how I make them and they turn out every time.  It is also less grams of trans fat and can be 0 sugar if using Splenda.  How about that...a Cookie that is better for you.

2 3/4 cups all purpose flour
2 tsp cream of tartar plus one half pinch
1 tsp baking soda
1/4 tsp salt
1/2 cup (softened to room temp)  Smart Balance 50-50 butter blend ( You could use real butter I think, but DO NOT  use margarine.  IT WILL NOT WORK!
1/2 cup Crisco butter flavored shortening
1 1/2 cups sugar ( You could substitute Splenda Granular sugar- use same amount)
2 eggs
2 tsp vanilla extract

Cream Butter and shortening
Add eggs, vanilla and mix some more
Add all remaining ingredients except for cream of tartar, mix well, then add the cream of tartar and mix well again.  ( It is exactly what I did) 
Preheat oven to 375

form into 1.5 inch balls and roll in a cinnamon-sugar mixture.
1/2 cup sugar
6 T cinnamon

Or how ever you like the mixture.  Some like more, some like less.

Place on ungreased cookie sheet,flatten a little and bake for exactly 10 minutes.  no less than 9 minutes and NO MORE than 10.

Let cool for one minute and scoop cookies onto a cooling rack to finish cooling.  ( otherwise the cookie will continue to cook)

(Side note)  If you have an idea to just cook for less time to allow for cookie to continue to cook on pan, DON'T.  This this will make the cookie cakey. Also use echo bakeware. Do not use air bake pans!

Biscuits

Ok, I know this may sound odd and you may want to substitute or change the way you do this.  Do NOT fall into temptation.  It may make a biscuit, but it will not make the correct biscuit. So exactly as I say and you will have a most wonderful product.
First tip.  Everything must be chilled for 2 hours.  We all know that you will have the buttermilk and cream already chilled. Chill the flour and salt and lard as well.  THIS IS IMPORTANT STEP!  Chill it all for no less than two hours.

2 cups of Gold Medal Self Rising Flour plus (1.5 Tablespoons reserved)
1/2 t of salt
1/2 c of lard  YES LARD Shortening will not work.  (Read the labels, same amount of fat)
1t of cream of tartar

2/3 c buttermilk
2/3 c half and half

Preheat oven to 475 Spray a pan with cooking spray.  I used a cast iron skillet for my pan.

Mix flour and salt together well.  Then add lard.  crumble with you fingers until crumbles are no larger than pea size.  Just rub the lard and flour with your fingers.  Do not over mix.  (Do not use your hands, they hold heat)  Use fingers

Now make a well in the mixture and pour half and half and buttermilk into well.   Mix until just mixed, do not over work, you may use hands but be careful not to over mix.  The dough will be sticky and wet.  Scrape you hands off and use the reserved flour on your hands and a bit into the mixture to fold dough so that you can turn it onto the rolling board.  OR as I do.....the counter.

Pat the dough out until about 1 inch thick and cut into biscuits.  I used a glass to have nice big ones.  Put into pan and bake in oven until golden brown.   About 15 min. or so, depends on how your oven is.  NO PEAKING, peaking all the time will cause the temp to go down.  Use your lite to see how they are doing.
I use an egg wash to get them nice a golden.
1 egg
2 T milk

mix well and brush onto the top when just starting to turn brown.About 10 minutes into the baking process.  They will rise well and be light and fluffy. 

6 comments:

Anonymous said...

WHAT MORE CAN BE SAID. YOU'VE SAID IT ALL. EVEN ME WITH DIABETES, FEET GOING NUMB FASTER THAN I'D LIKE ALSO FUNNY FEELINGS IN MY LOWER LEGS AND WONDER SOME DAYS, WILL I LOSE THEM.I COULD.I HAVE MY PITY PARTIES AND FEEL DOWN. ON TOP OF THAT MY NEICE WILL BE HAVING A MAJOR CANCER OPERATION ON 9,11,2013. SO I SIT HERE AND FEEL LUCKIER THAN HER RIGHT NOW. WE ARE BONDED BECAUSE I HAD HER DAYLY AS A NEW BABY WHILE HER MOM WORKED. IT WON'T BE A FUN THING FOR HER SO ALL I CAN DO IS PRAY THAT THEY GET ALL OF THE CANCER BY REMOVING HER BREAST.AT MY AGE I'M NOT GOING TO ALLOW MYSELF TO FALL APART. I CAN DO THAT ALL BY MYSELF BECAUSE OF MY HEALTH.LIFE SOMETIMES IS NOT FAIR BUT WE PICK OURSELVES UP AND BRUSH OURSELVES OF AND KEEP GOING THE THAT ROAD. HUGS, GRANNY LOU

Sharifah Rashidah bt. Syed Ahmad said...

Hi Brian,

I read your entry with tears welling up in my eyes...how lucky we are to be breathing now. I know how you feel about John. That's exactly how I feel about a dear friend, Pete who passed away of throat cancer about a year ago.

Pete was really a strong, selfless cancer comrade. We exchanged so many emails encouraging n motivating each other until one day, he ceased returning my email. Then, I got to know through a cancer forum, which was where we first met, that he passed away after going through a month of coma due to cancer cell spreading to his brain..

I remember how he used to say that he would be willing to switch place with me anytime everytime I whined to him about having to depend on my PEG tube...

So Brian, let's celebrate what we have now, shall we???

With love,
Sharifah

Sharifah Rashidah bt. Syed Ahmad said...

Dear Brian,

I've taken one of the images you have on your left panel..would like to share it with my blog readers..hope you don't mind..

With love,
Sharifah

Dr. Swill said...

Sharifah,

No problem. Anything I can do to help.

Peace B

Emily Walsh said...

Great post by the way. I was unaware of the statistic from the social security administration that just over 1 in 4 of today's 20 year olds will become disabled before reaching the age of 67. This caused some minor reflection and how important it is to be cognizant of my own health. I did have a quick question and was hoping you could email me back when you get the chance. Thanks so much!

Emily

Dr. Swill said...

Emily,

I would be more than happy to answer your question if you leave me your email or email me: DocSwill@aol.com

Peace B

Words To Live By:

"The best way to find yourself is to lose yourself in the service to others." -Mahatma Gandhi