A Brief Update

I came home from the hospital today. My laparoscopic surgery was done Wednesday morning. I came home today, Friday morning after only about 48 hours in the hospital. The small bowel mass was removed. I await the pathology report. The posterior mediastinal mass is  still there, and could possibly be removed at a later date. I am feeling fairly well, but still have some gas pains. I am off all pain medications.
I thank all those who have wished me well. I will post a detailed narrative of the events as I remember them, hopefully this weekend.

Surgery Wednesday 10:00 AM

The plan is to remove my small bowel tumor using the laparoscope. If successful, the morbidity of the operation should be minimal. Dr. Felix looked at my CT scan with me and thinks he may also be able to get the posterior mediastinal mass out.
Tomorrow, I see Dr Flam in the morning and will get labs done. EKG wednesday morning before the surgery. Colon prep tomorrow with Magnesium Citrate. I am not looking forward to that.
I will post again after my surgery, probably next week-end.

The Emotional Roller Coaster

Today, I went with Judy to Sierra Imaging in Fresno for a follow-up CT scan. On my last study, there was an unexpected new mass in my posterior mediastinum that was treated with a low dose of radiation in the hopes that this would stimulate my immune system to control the disease. I have been looking well and feeling quite well although I have commented in the past about some indigestion.
My CT scan was completed and I went to visit the Radiologist, Glen Hananouchi, a former partner of mine, to review the results, with Judy there as well. I realize this is always a difficult spot to put him in but I have been in this position many times. We reviewed the images and saw the mediastinal mass was smaller. There were no lung or liver metastases. I left the room elated and we sat in the waiting room as I had requested a CD of the images for my records.
Shortly Glen came to get me, appearing crestfallen and I knew the news was bad. There was a totally unexpected new finding. A new lesion had appeared in my small bowel, surrounding the lumen and thickening the wall, measuring about six centimeters in length and about three and a hanf centimeters in diameter. Well, at least the feelings of indigestion were not psychosomatic. There is no doubt that this is a real abnormality and I can't imagine it is anything other than a recurrence of Merkel Cell Carcinoma. This reminds me of the carnival game "Whack-a-Mole" where as soon as you whack it, it reappears elsewhere.
Here are some images from my CT scan. The mass is in the left upper abdomen. The magnigied view shows the bowel lumen (area through which digesting food passes) in white with the wall around it.

Those images are in the coronal plane. Below are axial images.

Again, the small image shows the tumor surrounding the bowel.


So, what next. I await a callback from Dr Nghiem. I have spoken briefly with Dr Flam. I have also spoken with Dr Ed Felix, a good friend, who is well known in the field of laparoscopic surgery and who has trained as an oncologic surgeon. I wii see him on Monday. I think he can remove this tumor using laparoscopic technique, with relatively little morbidity. Hopefully this will happen in the next week or so before I develop a small bowel obstruction. After that, who knows? Chemotherapy? Watch and wait for the next mole to pop up? It may be a while before I get some answers. 
I would not have been surprised to see liver or lung metastases on this examination. In fact, I was almost expecting liver metastases to account for the indigestion. This was a shocker, and speaks to the variability of this disease.
Well, I still will not give up. If the bowel lesion is removed and is confined to the bowel, and the mediastinal lesion is not growing, maybe we can get rid of every trace of this bully for good.

Returning From Hawaii Cruise

Tomorrow, we leave the Golden Princess after a wonderful two week cruise to Hawaii.
It will be back to real life with a CT scan on Thursday and an appointment with Dr. Flam the following Tuesday. Once again, I am cautiously optimistic that there will be no new disease, but if there is, I am prepared to face whatever treatments will be required, likely Chemotherapy.
Wish me luck. I will post the results when I have them.

Review of my Merkel Journey to Date

May 6, 2010, about three months before my 70th birthday, I discover a mass in my left cheek.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/i-discover-mass-in-my-face.html
I have a CT scan of my face and neck, links to images below.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/ct-scan-images.html
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/parotid-lesion.html

http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/questionably-enlarged-lymph-node.html

May 13 2010 I have a fine needle biopsy, false negative report. This delays surgery until June 3 2010, our 48th anniversary. 
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/i-have-surgery.html

June 7, 2010, I get the bad news.
Why the false negative, you may ask. I think it was a combination of factors. The tissue sample was wrongly sent as a parotid gland biopsy when in fact it was from a lymph node. It was read by a pathologist who had probably never seen a Merkel Cell carcinoma on a skinny needle biopsy.  I have not asked for a review of the slides in this case, as it is water under the bridge. However, if the correct diagnosis was made, it might have resulted in sparing me the surgery of June 3.
A search for a primary site fails. Radical surgery is planned, possibly with chemotherapy and then radiation.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/merkel-work-up.html

July 24,2010 My son Gary finds the Merkel support group on the internet, and I am in contact with Dr Nghiem. I cancel surgery and plan on radiation treatment alone.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/gary-finds-mcc-group-and-dr-nghiem.html

June 23, 2010. I visit Dr Nghiem in Seattle.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/my-visit-with-dr-nghiem.html

Aug 3, 2010 Radiation treatment continues. Here is a sample post.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/08/update-after-20-of-30-radiation.html

Aug 17, 2010. One day before my 70th birthday, I complete radiation treatments.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/08/i-know-what-michael-douglas-has-coming.html

My circulating Merkel count was ZERO and I am optimistic that the disease has been vanquished. Life returns more or less to normal and I continue to heal from the radiation treatments. We plan a cruise to hawaii for December, 2010, but on November 24, 2010, I have a follow-up PET/CT. Disaster! There is a large mass in my chest near my heart and esophagus, but not in the lung.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/11/bad-news-on-my-petct.html

Here are images from the scans.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/12/petct-images-annotated-musings.html

I visit Dr Nghiem again. My circulating Merkel cell count has risen to 13 cells per 10 cc of blood.
He proposes a unique treatment. A small dose of radiation to the tumor, about 10% of the usual treatment, all in one session. The object is to unmask the antigens associated with this tumor and allow my immune system to combat the tumor.
I have the treatment. My Merkel Cell count is down to 1.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2011/01/there-is-suicide-bomber-living-in-my.html

We took a cruise to Mexico. My count dropped to ZERO again. We now plan a cruise to Hawaii, the one we had to cancel. This time I have learned my lesson. I will have a follow-up CT scan AFTER we get back from the cruise.
So, how do things stand now?
My weight is stable. I feel OK but not great. I have been having some vague discomfort in the abdomen, not enough to slow me down, but enough to make me worry. Of course with this disease, you have to worry. My best guess as to my prognosis is 20% chance of surviving 2 years from some date. I don't know if it is measured from the first appearance of symptoms, first diagnosis or the day I discovered I am stage IV. The statistics for stage IV are that. However if you make it through 2 years, the chance of long term survival is good.
I continue to work, although my schedule is cut back. I continue to play bridge and I continue to enjoy life.
For those afflicted with this disease, feel free to contact me through this blog or email me at dave@shuster.com

Good News. The Circulating Merkel Cell Count dropped to ZERO

It can't go lower than 0. This can't be bad news. I can't let myself be too excited about this because the count was 0 before my initial radiation treatment and I still developed a distant recurrence, but this is the best possible result.
I had a chest x-ray and it doesn't show any large mass, although the location is such that it would take some growth from the previous to be visible.
There are no lung metastases visible. In fact my chest x-ray looks like that of a 40 year old.
We had a very nice visit with my brother Jon last week-end and even got in a bridge game before he left.
My sister Ellie will visit from Edmonton next Monday, and our middle son Brian will visit the following week.

Comparing the CT image to the chest X-ray suggests a barely visible edge of the mass. This is a very questionable abnormality.
I would like to thank everyone for their kind words of encouragement and prayers. I am not a religious person but every little bit helps.

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 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.