It's Official ...

I've made one more year. The results are in and my PSA is officially pronounced, "Undetectable! Perfect!" And a DRE confirms that healing has gone well.

My only disappointments today were first that insurance made a simple follow-up an exercise in frustration, aggravation and mediation. Secondly, the fact that I have to go back every three months for another year. Then every six months for the following three years. Of course that puts me on the path to a quarterly encounter with the insurance.

Back in December I went through a bit of a hassle getting a referral for a follow-up in January. They questioned, "why would you need to go back now? You were just there two months ago."

I had to explain that the doctor wanted three month follow-up visits and PSA tests to watch for the possible appearance of metastasized cancer. They sent the doctor a referral for two visits. Sounds like a good deal to me. When I went to get the blood test I was denied because it had not been THREE months since the last one. So I rescheduled my appointment with the urologist and my blood draw at the primary care physician. When I went back in January the blood test went well and I had no issue at the urologist.

My good fortune in that matter was an illusion. When I went to my primary care physician for the blood work again, they were questioning why we were doing it in April when we just did it in January. They checked and it was OK since it was April 30, the anniversary of my surgery.

Now it's May 7 and I went to the urologist for my 8:15 am appointment. I should have been in and out in fifteen minutes, because it was early, before they could get behind. No, there was a problem with my referral. It had one more visit open on it; but, it expired on April 30. (The date I needed to wait until to get my labs done.) The urologist's office had requested an extension on the thirtieth but had not received a response yet. The receptionist called the insurance and the doctor's group.

They weren't open. The voice mail said the they would "open promptly at eight-thirty a.m."
Of course they didn't. In fact at nine o'clock they weren't open, at least not answering the phones. I called my doctor about five after nine and Renee, there receptionist, was going to call a direct number and see if she could get it faxed to the urologist right away. So we waited.

I was just headed to the public men's room when my cell phone rang. Renee was explaining to me that she spoke to Violet and they were not able to fax the referral at this moment, but they would do it TODAY. I asked if she would mind explaining that to the office staff here because I didn't think they would believe me. She agreed and I handed my cell phone to the receptionist. They finished their conversation with the receptionist asking for a number where she could reach Renee and handed me my phone. I was all set. She would get me in to see the doctor as soon as possible. Of course this is one hour, forty-five minutes after I arrived and one and one half hours after my appointment.

"Pee in the cup, put your name on it and place it in the cabinet, please. You'll be in room one when you finish." Or words to that effect.

Wow! Peeing never transported me to another room before. I know she didn't misspeak. Syntax and alternative interpretations amuse me. I came out and went to room one and sat down. About five minutes later the same little girl, about five feet tall if she stands straight and petite, come's to the room and says, "Oh! There you are. How did you get here without being seen? I was right there."

I said, "I don't know; I'm pretty hard to miss." (being six feet two inches and and two-hundred seventy-seven pounds I don't usually slip by) She took the usual history, asked if I had my PSA tested and a list of my medicines and said the doctor would be in soon.

He was and said I was perfect. He wanted to do a DRE (I thought I had the last of those when they took my prostate out). He wanted to check on the healing, if the ureter healed well, with little scaring. He said it was great! I'm not sure how he meant that. I didn't think it was special.

Then he tells me he'll see me in three months. "THREE MONTHS?", I said. "I'll have to fight for that then."

He asked, "Why would you have to fight for that?"

So we had the discussion about referrals and about the hard time they gave me for seeing him every three months for the past year. He said, "You had cancer, for Christ sake you need to follow-up to monitor your health. It will be every three months for two years, then every six months for three years. Then annually. You want to be sure you're over it."

I tell you this NOT just to bitch. I'm telling this partly to let you know I too have my hassles with insurance. But, also in hopes you will do as I am doing and contact your insurance. We need to inform them that their process is BROKEN. Common sense should tell them that there is a linear sequence of events. Blood draw, lab work, result to doctor, referral to doctor, patient to doctor. It should not require the patient to call for each step and schedule the insurance office processes. We should not have to get approval for every step of the protocol individually. If they are covering treatment, in my case prostatecomy, then they should write a referral for the protocol.

Most people are aware that it is five years before doctors will talk about "cured". As process oriented as insurers are today, I would think they have a protocol for every treatment plan that they agree to pay for and the medical professionals agree is a 'standard' protocol. Having been diagnosed and verified by multiple tests the course of treatment being chosen and approved, the insurer should write the referral for the five year plan. The only caveat should be that I show up ALIVE and still insured by them.

The insurer has the trump cards. If I should die or be terminated by my employer or change insurance, or other wise lose coverage they can deny the claim submitted by the physician. If he was fraudulently filing claims and they deny it the doctor is not harmed because he didn't perform a service for which he is not paid.

Like the movie line, "I'm mad as Hell and I'm not gonna take it anymore!"
Call your insurer. Write your insurer. write to your state's Department of Insurance. Contact your legislators.

Be healthy and enjoy life. It's up to us to respond positively to stimuli. Keep smiling.

Twenty Percent Down!

It has been a year since my surgery. I didn't even have a twinge as my anniversary passed. Although I did think of it. As the medical transcriptions would say, "After recognition of the day the remainder was unremarkable."

The insurance got very particular about the precise day they would authorize lab tests. I must be at least ninety days since the last draw. And the same with the office visit. So I have had the blood test. I have an appointment for the seventh of May for the results.

Insurance of every type tries to run every one's life to avoid disbursement for claims. They live by premiums and die by claims. So understandably they don't want people to use them to frequently. They have to walk a fine line between 'practicing medicine' and managing claims.

To that end, my health insurance company changed their listing of several drugs in January. I had been on Lipitor and Zetia and Tricor for blood lipid level control for five years. My results were excellent. LDL <70,>45 and Triglycerides ~ 120. My nuclear stress tests had indicated no new cardiac blockage. My carotid artery ultrasound was very good.

The insurance sent a mailing out that Lipitor would go from $30 co-pay to $100 co-pay. There is no generic equivalent for Lipitor but they "suggested" Vytorin or another statin-family drug. The doctor wrote me a prescription for Vytorin and Fenofibrate, to replace the Lipitor, Zetia and Tricor. Thus I needed to test again in ninety days.

I made an appointment for April to combine all the blood tests for liver and kidney function and lipid levels and PSA for my Prostate follow-up. That week news broke about the ineffectiveness of Vytorin and of Zetia. They do lower the cholesterol level but don't stop blockage and in studies blockage increased. That pissed me off! In the interest of profit the insurance decided what drugs I could take; not my doctor.

Then I realized they decided what they would pay for which products. I decided what I would pay for which product TOO! But not to white wash the insurance company, they didn't lower my premium. They kept the profit and I had to give up more money or possible health advantage.

The test results came back and the doctor called with the news. LDL=64, HDL=48, EXCELLENT!! Liver function great! Kidney function good! PSA, undetectable!! I still have to go to the urologist for follow-up. Possibly as much for his edification as for my benefit, since I know there is no adenocarcinoma from my prostate. I should be good for another year. One down and four to go.

I looked into the Vermont thing. I thank you for thinking of me. I might consider it later. I am focusing very hard on wrapping up my career this year. I want to retire with benefits for me and my bride. At least for my bride. And I'm not sure what to expect from organizations for support.

Whether for heart, diabetes or cancer; I don't really feel worthy of a support group. I think of my self as much like I was; but MORE worthless. I don't feel like I survived a major heart attack that kills 43% of victims. Or that I have, knock on wood, gotten apparent control of my diabetes. Am I a cancer survivor? People in those support organizations seem to all have a story so much more worthy than I do.

I didn't have OPEN HEART SURGERY! I didn't have the anguish of being diagnosed with cardiovascular disease and FINALLY deciding to have my five arteries with 85% to 90% blockage bypassed. I didn't have to suffer the worst pain in my life. I didn't face death. I didn't almost die multiple times.
I only had one dominant right artery blocked 100%. I watched them push the dye. I saw the blockage. I saw the doctor place the stent. And it was so easy! I got the best drugs in the world for pain as I lay flat of my back under a sandbag while a tube ran in my groin to a balloon in my heart that inflated and deflated to pump my blood through my heart. I never felt like a victim. My nurses and doctors treated me with respect. Their touch felt so sincere. Their words were comforting when they told me how tough I was and how I could ask for anything we needed. And Sally sat there in the mind numbing boredom from the Wednesday night I went in to the Saturday morning I got out.

MY cancer was without manifestation of symptoms. It was discovered via my annual check-up blood tests. It was only moderate grade, the Gleason was 3+3, contained within the envelop of the prostate and unremarkable (one of my favorites of doctor descriptive words). I had a good bladder neck left and nerve sparing went well. I worked very diligently at bladder control and regained total continence in five weeks. What could I offer in support?

Every one there would have gone through so much more than I that I could not offer understanding, encouragement nor hope. The other day I received in the mail an invitation to Cancer Survivors, to attend a celebration of the hospital's award winning Cancer Center. Sally looked at the mail and said, "Huh! I never thought of you as a cancer survivor before."

But thanks for listening. I am just a very blessed old fart.

February 7, 2008

Results are what counts I suppose. Mine are excellent. Now nine months cancer-free. Had my blood drawn last week on Wednesday and got my results this Wednesday.

I have occasional pains from one or another of my hernias but I can now hold my water even shoveling the fourteen inches of snow we got on Wednesday. Doc says I'm doing fine! This is how it's supposed to be. No urinary problems and undetectable PSA.

I am set for the end of April for my next follow-up. That will be one year. Then I can go to annual check-ups on my PSA. If that is clear for years two through five they will consider me cured. I pretty much consider me cured now. At least from Prostate cancer that is. Who know what else will attack me.

November 19, 2007: Time for a Physical

Experience isn't always the best teacher. I went for my labs and was given a fellow named Tom. He was new to me and seemed about 30. He got his set up and I didn't bother to give him directions. He looked at both arms and said, "I'll try this one, okay?"

I agreed and he started slowly and methodically to put the band on my arm. I pumped my fist a couple times and he put on his gloves. He took the butterfly needle and laid it beside where I could see the vein and at a low angle. I was sure he wouldn't get blood that way.

He put a finger on the other side of the vein and slowly slid the needle into my arm. At the first flush of blood he stopped and put a vial in the tube. It slowly filled with blood. He popped it off and pushed in another vial. Slowly it filled. WOW!

I said, "You did that well. I usually get stuck three or four times."

Tom said, "That was only my second time."

November 3, 2007: Again?

I went to the doctor on October sixteenth for a blood draw. That is always an experience. This time it was lucky Kathleen. She is 46 years old and experienced.

As always, that doesn't matter to me. I destroy them all. I told her where it doesn't work and that we often resort to my hands. She started with my right hand. My veins just don't pop-up. We had the talk about drinking a lot of water for at least twenty-four hours before the draw (I did) and double tourniquet, baby needles, butterflies and all of that. I hang my hand , I pump my fist and still no veins. She finally sees one that she will try behind the third finger of my right hand.

Drat! She could see it "just go turtle". Blood started to flow, but then the vein contracts and draws back. Well I have others.

She would like to try my right arm at the inside of the elbow. I told her that rarely works in spite of how prominent it looks. Kathleen put double tourniquets on my upper arm and gets another butterfly setup while my vein backs up with blood. Rather it should have been. Still it did look pretty good.

Kathleen looks for the direction the vein runs and lines up the needle. Slowly she pushes the needle in and there is a little burst of blood that just reaches the tube on the butterfly and quits. No amount of coaxing, pumping or wishing can get blood out of this turnip! At least not at this junction of the humerus with the ulna and radius.

She apologizes for putting me through this; I'll just have to wait until the doctor comes in. With tears welling in her eyes she says she ALWAYS get it by the second stick.

I told her, " The doctor won't do any better, if even as well as you. How often does the doctor draw blood? Let's just get another setup and find another one. I'm used to getting stuck four or five times. You'll just have to change that 'always' to usually."

She was real reluctant to keep sticking me. I assured her that it was no big deal to me. It is obviously much more traumatic to her than to me. We agreed we would just keep going until we got it done. She got another setup and looked on the left hand. She gave it a try but it was another dry hole. I encourage her to just poke it again. It actually got some in the vial but just a bit. She said it was only about two ml and not enough for the testing.

I offered my left bicep. There is a large vein running up the bicep toward the chest. Whew! That creeped her out.

"Oh, no! I could do that." she said. She made a face and turned her head. I guess there are somethings that just aren't done.

We put a bandage on sticks number three and four and went to my right hand again. I pointed out a couple on my fingers that had been used before. They are right on the knuckle of my index finger. They weren't real prominent and she couldn't tell which direction they ran. So while she referenced the veins of her hands and arms and looked for the corresponding vein on me we talked about how I used to get weak kneed and green on the first stick. But over the last few years I have grown accustomed to being stuck a lot. She found one on my thumb. It was excellent! Two vials full. To the very top. Just in case there was some other test they wanted to add on. The probem using the knuckles is that it stings the entire time.

I assured her this was not the worst I had endured. I expressed my thanks for her patience and effort. It's nice to get a half hour of time from someone in the medical profession.

I only had to wait a week to go to the urologist/surgeon/oncologist for my follow-up. The second three months has passed already! I am still cancer free! It seems anti-climatic after the effort of the blood draw. He said I'm perfect! Much to Sally's chagrin.

We talked about continued continence and function. All is well and the doctor said really early. So I guess I am a poster child for prostatectomy. Personally I think it is remarkable that they can do what they do; but ... It is not without it's problems. I still have issues with constipation and hemorrhoids I never had before. I have various abdominal pain every day.

Then I put ALL my experiences on the scale. The pains and problems post surgery weighed against the pains and problems of undiscovered or untreated prostate cancer are pretty insignificant.

He said there are no long term detrimental effects. The recovery is permanent. Once I regained contienence it won't go away. Dysfunction won't return as a result of the prostatectomy. Not having a prostate won't produce ill effects over time.

Another visist in three months, January! Then again in April! Then every April for four years.
If the results are all negative i will be considered cured.

August 28, 2007: As time goes by ...

Here it is, another month gone. April seems so far away. I feel just as guilty as ever; but I am looking forward to retirement in several months. This continued good luck just makes me anxious about the future.

None of us have any promises of a tomorrow. We are all given the ability to dream and hope that what we believe will come to be. I wonder how it is that I am so very lucky to have not suffered.

I think perhaps it is partly due to my belief and faith. Part due to just the way I am. I would have expected that I would have been shocked, angry and fearful. Since my heart attack I have been more emotional. Why not now? It just never occurred to me. It was as if I were told, "you have a wart and we are going to remove it."

My life is surreal. Things are so very different since the MI that I sometimes wonder if I died and this is the afterlife. I often don't feel connected to events in my life. I don't get concerned or worry about little things like I did before. Not even big things like I did before.

I suppose a large part of this is that I feel that I can't effect any change in the outcome of any event. I can't 'be' healthy. I can't change the situation at work. I can't change my personal life. I can't change my children's lives. I am really just an observer.

I'm riding this 'train' and don't need to waste my energies worrying about where it is going or where to turn. I just sit back, relax, look out the window and take-in the scenery. I don't interact with the environment, I just observe.

I wonder where the next station is. What awaits me at the next stop. Is there a next stop? I suppose at any moment the conductor can kick me off the train. Or the engineer could screw up and wreck the train. I just wonder ...

August 1, 2007: First Follow-up Results

Wow!! Three months already. I got to go talk to a cute 30 something young lady about my test results and "sex life".

In her words, "The PSA is perfect!" The continence is great! Really was early and has improved. The Viagra therapy is okay.

It can take months and months. Then she explained that the musculature heals pretty quickly. The Viagra will promote revascularization in a few months. Nerves can take a long time to recover. They suffered a pretty big insult. It is all attached to the prostate and had to be carefully separated before the prostate was removed. Even though they were very careful and had very good nerve sparing experience with me, nerves don't respond well to being disturbed. It was as if they really whacked my prostate 'funny bone' and it will take a lot of time for them to recover.

The good news was very outstanding, I thought. If this is my life, I can live with it. And what guy doesn't like the opportunity to talk to a cute 30 year old who really cares about his petty problems? And then I get to go home to my lovely lady who knows me like a book. Three great kids and their spouses and families all in the turmoil of busy, happy lives.

This is what makes the autumn bountiful! I am having a great harvest of what I sewed in the Spring of my youth and loved through the Summer of my life. I often wonder why I deserve such riches.

Another three months and I can do this again. Just to catch anything that might recur early.