Friday, January 28, 2011

Is This What it is Like to be on Death Row?

One of my colleagues working at Kaiser Permanente visited with me yesterday. I described to her and the feeling that in a way, my situation is similar to that of somebody on death row. Merkel cell cancer is the executioner. Dr Nghiem  is my defense attorney. He is appealing my sentence to higher courts. Every time we have an interaction, he gives me hope that in some way, some judge will find merit in my appeal and commute the sentence. The only difference is that a death row inmate is given a definite time for his execution, and an attempt is made to avoid all discomfort as the sentence is carried out. I do not have a definite date from my demise, and I have no assurances that should my appeals be denied, I will have a painless and comfortable death.
I have in my possession the materials needed for my next blood draw for circulating Merkel cells. By the end of next week, I hope to have the result. If the cell count has risen, I expect that I will be undergoing chemotherapy designed to treat small cell carcinoma. That will be preceded by some form of imaging study. If the cell count has not risen, I can wait another month.
I have been feeling vaguely unwell. There's nothing that I can really put my finger on. There are some minor abdominal cramps and lower chest pains. My appetite is not good. This may be attributed to the lack of improvement in my sense of taste and continued dry mouth. My weight has stabilized around 160 pounds, almost 20 pounds less than what might average weight used to be prior to the diagnosis. Perhaps this is all psychological, as a result of my not looking forward to any future treatments.
I have been thinking that this posterior mediastinal mass should be visible on plain chest x-rays and I'm considering getting a plain chest x-ray for my own edification as to whether this is true and then to be able to follow the size of the mass with a very simple test. Of course this would not document any new masses involving lymph nodes in the upper abdomen or in the  mediastinum.
In my discussion with Dr. Ngheim regarding the planning of my experimental treatment, there is one thing which he said that stuck in my mind. He stated that there are no long-term survivors of Merkel cell carcinoma after chemotherapy. This is because the chemotherapy destroys the immune system which is the major defense against the spread of Merkel's. I think that his intention here was to dissuade me from having chemotherapy and to convince me to have this treatment. Reading posts to the Merkel cell message board, I see that there are several anecdotal cases of substantial survival of patients who have had what I would consider to be more advanced Merkel cell cancer than I think that I have. Because of this, if the disease is progressing, I will undergo the chemotherapy.
It is my hope that with this plan, I will not be trading the last days that I have of relative comfort for days of misery. Many patients are very sick following chemotherapy. I just read a post documenting rapid demise from infection during chemotherapy. On the other hand, when I was undergoing radiation treatment, I met a man who was having radiation treatment in the morning and chemotherapy in the afternoon, and he did not complain of significant symptoms.
In the meantime, I continue to work three afternoons a week. I plan to continue to play bridge twice a week. I look forward to a visit from my brother, Dr Jon Shuster, who is a professor of mathematical statistics at the University of Florida.
I'm also looking forward to a visit from my son Brian, who will be here just before Valentine's Day. I'm hoping to be able to travel to MontrĂ©al to visit my mother, perhaps at the end of March, depending on whether I will be allowed to travel assuming that I am undergoing chemotherapy, or hopefully, not needing chemotherapy before then. 
In keeping with prior posts, I'm going to conclude this blog with a satirical song that I wrote many years ago, but I think that much of it is as true today as it was then.


To the tune of
Master of the House
Les Miserables

Sung by the HMO President

       Welcome, My friend
       Sit yourself down
       We are the  best
       Provider in town
       As for the rest
       They don’t compare
       They are obsessed
       With refusing care
       Seldom do you see
       Honest men like me
       Working in the health
       Insurance industry

       Master of the plan
       Ads are on TV
       We show those smiling doctors
       But what you don’t see
       Show an MRI
       Make it look high tech
       You can’t even get one
       If you break your neck
       Glad to do a friend a  favor
       Doesn't cost us to be nice
       When you sign up you will  find out
       Everything has got a little price!

       Master of the house
       Keeper of the gate
       Ready to deny 'em
       Or to make ‘em wait.
       Use generic drugs
       See your primary  care
       If you use the ER
       You will be the payer
       Everybody needs insurance
       Everybody has to spend
       If you get diseases
       We won't help you in the end!

       Master of the plan
       Tumor to remove
       Never get it paid for
       ‘less its pre-approved
       Get a pre-op chest
       Help you to decide
       If it turns out normal
       Payment is denied
       Everybody's paranoiac
       Everybody's on his own

       You all signed releases
       Jesus! Won't I skin you to the bone!

       [To another new customer...]

       Enter old man
       Pay your co-pay
       Doctor will  see you
       Maybe some day.
       Charges are low
       They won’t go higher
       Unless you get sick
       Coverage won’t expire
       Join our  HMO
       Get rid of Medicare
       And nothing's overlooked
       Till  you’re on welfare

       Care beyond compare
       Care you can’t resist
       See a nurse practitioner
       Not a specialist
       Kidneys, they don’t know
       Liver what is that
       Filling up their charts
       With this and that

       Interns are more than  welcome
       Residents we’ll keep occupied
       Reasonable charges
       Plus some little extras on the side!

       If you have chest pain
       The ER you must disdain
       If its not a heart attack you'll end up payin'
       Here a little  slice
       There a little chop
       You see a nurse practitioner and not a doc
       When it comes to fixing prices
       There are a lot of tricks he knows
       How it all increases
       All those bits and pieces
       Jesus! It's amazing how it grows!

       Master of the Plan
       Tries to catch your eye
       Never wants a Healthy one
       To pass him by
       Service to the poor
       Equal to the rich
       Don’t need a Dermatologist
       To cure your itch!
       Everybody's capitated
       We make it all a closed shop
       Payment never increases
       We just take ours off the top.!

       Master of the plan
       Says  precertify
       Call the number just  to hear
       Deny, deny
       Never operate.
       Don't investigate
       Don't care if we find your cancer much too late
        CoPay for pharmacy
        Don’t Pay for MRI
       They all get diseases
        Jesus, its much cheaper
        If they die

Don’t care who he fleeces,
his nephews and his nieces
Pack up their valises
Never hear their sneezes
They eat too many fatty cheeses
Meats and all those greases
Jesus it saves us money if they die.

Friday, January 14, 2011

From the Sapphire Princess

This post was written on the last day of our 10 day cruise to Mexico. We have had a wonderful time. We’re going to do this again hopefully.  Just before we left for this cruise, we learned that we will receive a cash refund  from the insurance for the cruise that we had to cancel.
This cruise has been a great distraction. Most of the time, I have been able to put my condition on the back burner and not think about it.  We met some very nice people who were sitting at our table and introduced us to a new card game which they call “nines”. It is different from the game of nines that we used to play.  We have been playing this game with two decks of cards and six players. Judy and I have also played several sessions of bridge. In one session, we managed a 78% game, which, perhaps, speaks more to the quality of the opposition than to the quality of our game.
There is food everywhere, but I have found that most of the time I have not had very much of an appetite. I am attributing this to the continued dryness in my mouth and the continued loss of much of my sense of taste, although I am able to taste foods to some extent. When I begin eating, the food taste pretty good, but it seems like my taste buds get tired, and the food loses its taste.
The moment of truth will come at the end of this month. I’ll have another blood test for circulating Merkel cells. If the cell count stays the same or goes to zero, I will have follow-up imaging at the end of March. If the cell count goes up, I will have follow-up imaging at the beginning of February.
 I was thinking yesterday about a very ironic event which happened not too long ago. Right after the passage of the health care legislation, I was trying to get a sandwich for lunch at the local subway shop, and I was accosted by a roving reporter for a local television station. They were trying to gather comments about the new tax on tanning booths. They asked my opinion and I said that they should raise the tax to help pay for healthcare for the people who ended up getting cancer from the tanning booths. The segment was aired on local television. The ironic thing is that it was not long after that that I was diagnosed with a form of skin cancer that is associated with sun and radiation exposure. 
This has been a very great escape from the world. Next week, it’s back to reality, with two doctors appointments, one dentist appointment, and one appointment with an attorney to complete the details of our wills and medical directives. I also plan to work 3 half days. I also plan to play bridge two afternoons next week. It will be busy.

Saturday, January 1, 2011

There is a Suicide Bomber Living in my Body

The suicide bomber living in my body is Merkel cell carcinoma. It lurks in hidden reaches and plans its terrorist attacks, with the potential  that if it is successful, it will result in its own demise as well as mine. Just like the battle against terrorists, we have to use all the weapons at our disposal to destroy every single Merkel cell. To that end, I have undergone a somewhat unconventional treatment. When my Merkel cell carcinoma recurred as a large posterior mediastinal mass, instead of the suggested chemotherapy followed by a large dose of radiation, I have had only a small dose of radiation directly to the recurrent tumor in the hope that this will trigger an immune response. Prior to this treatment, my circulating Merkel cell count was measured at 13 cells per 10 mL of blood. I have just received a very encouraging result. After 2 1/2 weeks, the count has decreased to only one cell for every 10 mL of blood. At the end of January, I will have a follow-up assay, and perhaps my body will have successfully obliterated the terrorists.
I am feeling well, without any symptoms of the mediastinal mass. I have had no side effects from the radiation treatment. The only complaint I have is a dry mouth, and reduced sense of taste, all resulting from the original surgery and radiation.
Over Thanksgiving, we had a wonderful visit from all of our children. I have posted a collection of photos on Picasa. The link is below, and I don't know is how to place it so that you can click it. If it does not work, you'll have to copy and paste it into the browser window. I think I fixed it. You can click on "Here is the link" below.
I am sure that this collection of photos will bore many people, but for those interested, the photos are of my oldest son Gary, his wife Dana, and their three children, Eva, Sara and Bel, my middle son Brian, and my youngest son Mike with his wife Leanna,  and their two children Sammi and Eli.
Here is the link

We will be leaving on Wednesday for a cruise to the Mexican Riviera. It will be a 10 day cruise. We are taking this instead of the Hawaiian cruise which we had to give up as a result of my needing to have more radiation treatment.

You may notice that there are ads placed in this blog. Surprisingly enough, there have been over 3000 page views since I have begun posting. I have decided to monetize the blog. I think that if you view the ads, money comes to me. Any such money will be donated for Merkel cell research to the University of Washington. I will personally match any money donated.

My dear friend, Lenny Clayman, frequently suggested that Judy and I join  him and his wife Bluma on exotic vacations, most of which we have not done. In the past few years, he urged us to do this by saying “We don't have that many good years left.”  I may not have that many good years left, But I plan to live them to the fullest.