COSTS Can Kill in AMERICA

From Kidney Cancer Resource

Contents 1 Overview 2 Detail 3 Uninsured with Cancer in America 3.1 Comments 4 You Have to Pay to Play 5 Disclaimer 6 E&OE - Errors & Omissions Excepted

Overview

Just a thought that puts so much in perspective and shows why we MUST fight to prevent our Government using devolved irresponsibility to destroy our NHS whilst hiding their ineptitude and destructive ambitions behind over paid and unrequired parasitic QUANGOs.

This is one of an increasing number of THOUGHT pages that I will add to from time to time as background for those of us who have Cancer.

Detail

This is from a public blog but I have NOT put links as I am utilising this patient's essay in a different context - I have not altered ANY of it.

Uninsured with Cancer in America

Uninsured with Cancer in America

I think the worst part about this is that I have no medical coverage and no money to pay for any of this. I can't tell if I am depressed or just plain mad. The more I think about how Dr. Rude treated me - just passing the buck to Cleveland Clinic - then the doctor at Cleveland Clinic passing the buck on the liver follow-up and additional testing on to one of my local physicians - I could just scream!

I spent Thanksgiving morning writing letters to State Representatives and the Governor of Ohio - trying to reach out to the people that have the power to help my Medicaid application get approved. My Medicaid appointment isn't until December 5th and I don't know how long it will take to get an approval/denial letter after that.

I think I am just mad about everything right now. This has been the worst possible year. Our dog died a terrible death this summer because the only veterinary care we could afford was from a large animal vet. This was the only vet willing to take payments - and we all waited too damn long. Sadie would still be here if she could have gotten to a vet sooner. 3 hours before she died the vet gave her a shot of insulin and then put 2 bags of lactated ringers under her skin. She began seizing 5 minutes after he left - we called him immediately - he couldn't have gotten more than 10 minutes away from here. He said he would come back - but he never did. Sadie seized for 2 hours then died in my husbands arms - but not before hemorrhaging from her bowels and her nose. I have never prayed so hard in my life for a miracle. That miracle didn't happen. Gave me a new view on being realistic.

The reason I mention this is because I stumbled upon a website last night where you can check License holders in Ohio - Lawyers, Doctors and even Vets. The vet that treated Sadie - isn't really a vet. His father has a current vet license....but he never was licensed as a vet. How terribly sad! We trusted the wrong person.

Then in August I lost the best paying job I have ever had. To get September's rent we sent back our rental refrigerator and bought a little dorm fridge. We also sold our stove. This has been quite the humbling year. I don't mind having very little - possessions are not what is important. It is health and our relationships. I have been perfectly happy with a microwave, dorm fridge and a coffeemaker. The only problem that I see is trying to do a 24-hour urine with a refrigerator that can barely hold a 6-pack. But - unless I get some medical coverage I won't need to worry about that. I did a Publishers Clearinghouse entry online last week out of desperation......Gee - I hope I am a winner.

The people at the welfare office crack me up - they say we make too much money. All we have coming in is $1200 a month. Not enough to cover everything. We are behind on our rent by $1000 - and that doesn't include what we will be short on for December. I just hate this. I absolutely hate this! In such a short period of time we went from being current on our bills to being in the hole. And now cancer....great. It makes me want to ask the question, 'anything else'? But I know it could be worse - it just doesn't feel that way sometimes.

I don't mean to dump on everyone....but as we all know....there are other things that can go wrong while you have cancer. Like unemployment - bills - falling behind on everything....and becoming an emotional wreck. I don't like this place in my life. I want to go back. Sometimes I just wish I didn't know about the cancer. What good does it do for me to know when I can't afford to have it fixed?

A friend emailed Kucinich and I emailed Regula. Don't know what they can do - but at least 7 people with influence in Columbus now have the letters. I am extremely anxious to just get the tests, surgery and recovery out of the way. Then we can deal with treatments....if there are any that will work.

I have been looking all over the net for resources.....if I just had Breast Cancer I would have more hope of testing and surgery despite my financial limitations. I would like to think there is a Celebrity, Philanthropist or Good Samaritan out there who would help us.....but frankly there are too many people in the same boat right now. Everyone wants help...but how many really receive it. All the local resources are tapped out for the year. Too many unemployed, too many uninsured and too many relying on a system that watches us as we slip through the cracks.

I wish that I had something positive and insightful to say today - but I don't. I am in pain - I am tired - and I just want this nightmare to be over. The sky over Alliance Ohio pretty much reflects my mood - grey, overcast and no sunshine. I really could have used my sunrise this morning....it always seems to give me hope.

Comments

Kucinich: commented on is an also ran Presidential candidate Denis Kucinich as I recal an Ohio Senator in his early 60s married to an Essex girl about 30 years younger with bright red hair and about 8" taller than him. Let's hope Kucinich can help - he does if my memory is right, have some understanding of povery being from a large but penniless family background and having lived, I believe, in a car for some time. Greg L-W.

You Have to Pay to Play

You Have to Pay to Play

With Cancer - you have to pay to play the game. This morning's blog will probably be the most blunt one I have done yet. I love to write - it is very therapeutic - it is like bleeding onto paper. I am going to not think about the fact that my family members might be reading this - I am not as honest with them about my feelings as it will just make them worry more. When I have a pathology report that backs up my feelings - then I will share more openly with them - that is, unless they read this first.

First - paying to play the game. Cancer, as I see it, is a game of chance that requires no skill beyond that of the surgeon or oncologist. It is a costly game and the time that you get to spend playing it depends on how much money you have. Just like Vegas - when your money runs out you don't get to play anymore. Let me give you an example of costly for a moment. I just received my bill from Cleveland Clinic for my appointment with Dr. Gill - or should I say the 10 minutes that he spent with me typing notes into the computer - $529.00!! I could have bought a new computer for that much - or bought an airline ticket to go see my sister in Kansas. For $529.00 my airline ticket would have included that exhilarating feeling of take-off, some complimentary peanuts, a soft drink, the comical act of fitting my plus size body in a petite size bathroom as well as the terror of the process of landing. Yes, that would have been worth $529. In a doctors office, for $529, I want the nurse to offer me a cup of coffee or a glass of juice and I want a damn physical exam. For $529 I want a doctor who will address my symptoms, address my liver lesions and tell me MY options - not his. I could have gone to see a psychiatrist for less and would have gotten a whole hour to talk about me, my cancer and my pain. I can't wait to see the bill for the Creatinine blood test and the renal protocol CT.

Medicaid is trying to put the cart before the horse. We have no children in the home - so the only way I will qualify for Medicaid is through a disability recognized by social security. I found my disability on their website - actually I may have 2 of them - cancer. There is kidney cancer and there is liver cancer. Just pick one - I really don't care. But, you have to have a pathology report to prove it is cancer. I can appreciate that - I too would like a pathology report proving that I have cancer. Until I have a pathology report proving that I have cancer - I have put the panic button in the kitchen drawer. Now, how do we get a pathology report? Surgery or biopsy. Fortunately, I have found a doctor that has ordered a biopsy of my liver - but where does that leave my kidney should the liver biopsy come back negative? Then I have to go to the back of the line and just wait a few months until Medicaid decides that I am sick enough to qualify, I guess. This system sucks - there is no nice way to put it.

I have had 3 urologists and 1 GI doctor completely review all of my medical records and CT scans - they all say the same thing - I have kidney cancer. 1 urologist says my liver is in trouble and the GI doc is pretty certain that I have cancer in my liver. The first 2 urologists don't count with regard to my liver - Dr. Rude couldn't care less and Dr. Gill is only concerned about taking out the mass in the kidney. Dr. Gill is world renowned and knows that liver mets at the time of diagnosis drastically change the surgical and treatment plan - if there is one. Am I feeling disenfranchised - hell yes!

How does this even happen? Seriously, 6 months ago by biggest problem was that nothing I did at work was right and I couldn't do anything to please the boss. Just 3 months ago my biggest worry was finding a job. 6 weeks ago my biggest worry was getting the mass removed from my kidney. Everything has just happened so fast. I literally don't know what to think - am I going to die from cancer or am I going to live? I am only 37 years old - this is not fair!

Sometimes I feel like I am going to die from this. I feel like I have no control over anything anymore. I research because I want to know what to expect - I want to know treatment options and their side effects. I am a strong person in certain regards - but I don't think I am strong enough to do the systemic or immunotherapy treatments. I don't even know if I could courageously endure chemotherapy. I am a big baby when I am sick. I do not handle vomiting very well. Now, if you tell me that I will lose my hair, my eyebrows, be fevered and have diarrhea for the duration of the treatment - then sure, I'm game. I have no problem going to BestCuts and pulling a Brittany Spears right before chemo. I have no problem losing my eyebrows - they are bushy and quite frankly I am sick and tired of plucking all the time. It would be fun to pencil in new eyebrows and change my facial expression from day to day. Fever, chills and diarrhea - easily managed with some blankets and a precautionary diaper. But don't tell me that I will spend 'x' number of months vomiting. I won't pay to play the 'upchuck' game. No thank you. And if I do agree to play the game - you better give me better odds than a 12-20% response rate. There is not a damn thing that is good about cancer - especially kidney cancer.

This whole experience has made me think about my death and time left a lot sooner than I had hoped to have these thoughts. I really really hope the pathology reports prove all the doctors wrong - that means I will live! If I am cancer free then I will throw a big party out here in the country and even invite Dr. Rude for the celebration. But if I have cancer, and if I am going to die from it, then I want to have control over where I die and what happens to me. I have decided that I want to die at home in my bed. I want to be buried in the backyard as well. I will probably end up in a cemetery - but so far these are my wishes. I won't go into any further detail on my wishes until we have pathology reports and a prognosis - but at least if I get sucked up in a tornado or hit by a bus - my husband knows what I want.

I don't mean to scare the newly diagnosed with my blog. Heck - I am a newbie too. It is just important to know that whatever you are feeling is ok. Even the seasoned veterans of this cancer will tell you that it is ok to wonder about what will happen. One important thing to remember is that it is ok to take a break from your cancer thoughts. Getting lost in a movie or some other topic of conversation is good - forgetting about your cancer for a moment is good. The cancer is still there in your body - it is not dependent on your thoughts for its survival or demise. This is the one thing you can control - when to focus on it and when to focus on other things.

I find that communication is my greatest tool in preserving my sanity. I have a feeling it will serve me well in the weeks and months to come. This blog is my safe place where I can say anything I want to without fear of judgment from others or of scaring the crap out of people. Most people who visit my blog already know all too well the things I write about - most are fighting for their lives or praying for me during my fight. My best piece of advice to newcomers is to find a safe outlet for your emotions - whether it be a person or a blog. If you are thinking it - chances are thousands of others have been there too.

Now I need to put on a pot of coffee for hubby and I and get the energy to go to the library and the store. Another 'Up-Side' to this diagnosis and my symptoms is that Ron is my shadow now. I love going grocery shopping with him. He pushes the cart and always throws some good surprise in the cart when I am not looking. I like it even more when he goes alone to do the grocery shopping - it is like Christmas morning. I never know what he is going to bring home. Before all of this I always enjoyed just going by myself to the store. Put a girl in Wal-Mart and she is bound to find other things to look at besides what is on the list. I liked the drive into town, a good song blaring on the radio and the window cracked a little for fresh air. There was something about that time that I got to spend alone. I don't do it anymore because I have had 2 episodes of outrageous fatigue while shopping at Wal-Mart recently. There is not a more inappropriate time to get exhausted than when you are only half way through the list, an 85-year old woman with a cane just blew right past you in the aisle and you have an 8 mile drive home alone. I don't know why I get that - and if I ever get it again - I don't want to be alone when it happens. Perhaps it is depression or this cancer everyone says I have - take your pick. Nothing surprises me anymore.

Disclaimer

E&OE - Errors & Omissions Excepted