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 Montréal 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.
MASTER OF THE HMO
To the tune of
Master of the House
From
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
Jesus!
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
Jesus!
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.
my husband is in final stage merkel cell...been battling it for over 4 years...i don't think chemo helped him at all, but radiation was "spot" on...just be sure to take any good health supplements you can find...good luck...it sucks.
ReplyDeletemy dad is in boston. he hasn't been battling merkels that long but this awful cancer has won. it has spread to his organs and bone. drs arent sure yet if they will even be able to do chemo because he is so weak. god bless you and all fighting this awful cancer.
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