We're Back!!!

We're back from the cruise. I'm going to divide this post into 2 portions. The 1st will deal with my health status. The 2nd will deal with a description of the cruise and associated events.


Part 1. My health status.
A few days ago, I was thinking to myself that since I began radiation treatments, I have never felt better. My cough and shortness of breath have significantly improved. My exercise tolerance has improved. I even climbed 3 flights of stairs at one point during this cruise. But peripheral neuropathy has changed little, but I think that the extent of the neuropathy has decreased in that there is less loss of sensation in the mid-calf level than there was. Before the cruise, I complained of some pain which appeared to come from the area one of my right lower ribs. Of course, whenever there is unexplained pain, one immediately thinks that it may be metastatic disease. However I think that I must've pulled a muscle while coughing, as the pain has gone away. 
At the end of the cruise, on Friday night, I began to have severe heartburn. This became substantially worse on Saturday and Saturday night. I have had some difficulty explaining this. It felt like heartburn in that it was a burning pain centered on the lower chest, just like  heartburn that I used to have before I began taking Prilosec. However it did not seem to be related to acid reflux as I have been on full doses of Prilosec, and the pain seemed to be at its worst right after  and during eating.  On about 2 occasions, the pain was so severe that I was postulating that may have torn the mucosa of the esophagus.  Of course, when this happens, one immediately becomes convinced that there is now metastatic disease or that the tumor in my lower esophagus has again begun to grow. However I am now theorizing that this was due to viral infection as I was exposed significantly during this cruise as I will describe below. In fact, I am feeling significantly better, and this pain has almost completely gone away.
In summary, I am back to thinking  optimistically, that, knock on wood, I'm feeling about as well as I have ever since I began radiation treatments.


Part 2. The Family Cruise

The photo above was taken on the 2nd formal night of the family cruise. Standing from left to right, are Mike, our youngest son, Leanna, his wife, Brian, our middle son, Dana, Gary's wife, and Gary, our oldest son. Sitting are Judy and me. To my left is Eva, our oldest granddaughter, Age 10 1/2. The bottom row consists of Sara, Eli, Bel, and Sammie.  Sara, 4 1/2  and Bel,  2 1/2 belong to Gary and Dana. Sammie 3 1/2 and Eli 1 1/2  belong to Mike and Leanna.

The cruise began with numerous fiascoes. Mike and his family together with Judy and  I  all stayed at the Holiday Inn in Long Beach. There was supposed to be a free shuttle going to the terminal from the hotel, and we could park the car for a week at no additional charge. It turned out that the shuttle only went to the Long Beach port and our cruise was taking off from San Pedro. we needed to get a shuttle to take us to the cruise terminal, and it was quite a job fitting all the luggage into that shuttle, (not free).

There was a virus going around, and Sara  was sick, and we were not sure that we would be able to get onto the ship. They do have a health questionnaire, and they have the right to bar access to the  cruise if they feel that a person may be a health risk to passengers.  However everybody managed to meet on board ship and get underway.

The premise was that for the family cruise, everybody would be on their own, but we would all meet for dinner. In fact, most of the time, we were together. This was very nice, but did involve more babysitting for Judy than she had anticipated. The 1st two family dinners were terribly disorganized. The wait staff was particularly slow, and this exceeded the patience of the grandchildren.  There were lots of requests for special orders for the small children, and this somewhat overburdened the waiter and his assistant. By the time we had the 3rd dinner, after I spoke to the maître d', the situation was fairly well resolved. However there were many instances where grandchildren had to be taken out of the dining room and food for the parents was sent to the room.

There is an excellent children's program on board the ship. However 2 of the grandchildren were too young to stay there without adult supervision. Much of the time, the adult supervisor was Judy.

In the middle of the cruise, Sammie  ran a fever of up to 104. She did not seem nearly as sick as that number would indicate. However clearly, there was a virus involved.

In Cabo San Lucas, Brian took Eva  ziplining,  and that was a highlight for them. On the last night, there was another fiasco. Eva and Sarah disappeared and were nowhere to be found. There is nothing so terrifying as the disappearance of children. We had the whole ship's crew searching for them, and they turned up at a dance club, where they were having a great time dancing as everybody else was searching.

At the end of the cruise, we all went our separate ways. However everybody but Brian ended up meeting for lunch just south of Bakersfield on the way home. Mike and his family stayed over at our house as it would be too long a trip to drive all the way to San Jose where they were going to stay with  her parents for a week. This is the time when Eli became ill. He spent the whole night crying and could not be soothed enough to get some sleep. On Sunday morning, they took him to a pediatrician, who said that this was a viral infection. We had suspected that it might be an ear infection.

By Sunday at noon, our house was finally quiet. The cruise was over. We were left with fond memories, and viral infections.

Hurray! I don't have a Doctor's Appointment for Today

It's a Wednesday, and I don't have to see Dr. Flam today. In fact, I don't have to see him for another 6 weeks. I will need my port flushed 2 weeks from today.
I am feeling somewhat better. Although I am still short of breath, I can take a deeper breath without coughing. The cough syrup helps. It does contain a narcotic, so I try to take it only in the morning.
My neuropathy has changed a little. Occasionally, I do have some pain in my feet. This is new. However, there appears to be less numbness above the ankles than there was previously. My hands show little change. My mouth is still quite dry, and it makes many foods unappetizing. This includes bread, cake, and cookies. However my sense of taste has substantially improved, and is close to normal.
On Friday, we will drive to Los Angeles and stay over at the Holiday Inn in Long Beach. On Saturday, we will embark on our family cruise to the Mexican Riviera. (These days, the Mexican Riviera includes only Ensenada  and Cabo San Lucas.) There are no other stops. Whether this is because Princess Cruises is trying to save money, or because of unrest in Mexico, is uncertain. This is a vacation we've been planning for some time. It is a real family cruise. It will include our 3 sons, 2 daughters-in-law, and 5 grandchildren. When we planned this, I was hoping I could go, but I was not very confident that I would be in good enough health to enjoy it.  It seems to have worked out well.
We have now booked another cruise, this time, to Hawaii, at the end of February. I am very optimistic about this one.
I have been working about 3 mornings  a week at Kaiser Permanente,  and plan to work 4 full days at  Sierra  Imaging  at the end of December.
In other news,  the IRS has disallowed the deduction I took for the Ponzi scheme that I was a victim of. My  file was sent to Atlanta, but the agent who reviewed my tax return did not have the entire tax return but only the numbers to review. They didn't bother to give him the supporting documentation. Of course, he disallowed what was classified as a miscellaneous deduction. The IRS then stalled the case until the deadline for me to go to Tax Court was so close, that the case would not be reviewed in time. I think that the agent who receive the case in Atlanta did not want to have anything to do with it, and so just delayed to force me to go to Tax Court. This is an annoying bump in the road, and  I would be much more upset, I'm sure, if I did not have the experience of having to fight a malignant neoplasm. That helped put these minor annoyances into their proper perspectives.
I will conclude this post, and hopefully future posts, with an anecdote from the past.
One day I was doing a carotid angiogram. These examinations are done with the patient awake, although sedated. We were most interested in the region of the origin of the internal carotid artery in the neck, but had some interest in the branches at the base of the skull. When the catheter was in place, I was giving instructions to the technologist as to how to position the patient. The conversation went as follows.
Me: "It's important that we get the neck in this patient and not so important that we have the entire brain."
Technologist,  after setting up the equipment, “Is this okay?”
Me: “No. I don't care if you cut off the top of the patient's head. Just make sure you get the neck on”.
Patient:  “I care. Don't cut off the top of my head!”
 The moral of this little story is: Be  careful of what you say, because you don't know who may be listening.

Not Much New, So I Tell the Story of Sadie Cohen

It has been a while since I posted to this blog. That is because there has not been much change. I did visit Dr. Flam on November 9. My labs were unchanged, and my chest X-ray showed little change. because of continuing cough and shortness of breath, he ordered a CT scan of my chest. That was done on Nov 10. I looked at the images but do not have them to post. I would describe the findings using a term I coined. "Mixed Change". That is, somewhat better in the right upper lung annd somewhat worse in the right lower lung and the same on the left. No change was seen in my posterior mediastinum, the site of the only known tumor, which I hope is totally inactive. No liver metastases are seen. I will get the full report when I see Dr. Flam on Wednesday. I still have shortness of breath and a cough, The cough responds well to Hydrocodone/homatropine cough syrop. It allows me to dictate reports with little interruptions for a coughing break.  Drug Info 
This is a narcotic with potential for addiction. Apparently the Homatropine is added to stop people from taking too much at a time. It also helps me sleep all night as the homatropine prevents bladder spasm. Constipation is a side effect but so far has not been too much of a problem. My other symptoms are stable. Dry mouth, arm and leg numbness and hearing loss have not changed and are not too debilitating.
I have been working half days at Kaiser and even worked a full day at Sierra Imaging. 
I was taking Vitamin B Complex, tablets from CVS. On my CT scan, I could see the tablets intact in my colon. Needless to say, they could not be very effective in treating peripheral neuropathy.
We have an addition to the family, sort of. Our oldest granddaughter Eva has a baby (half) brother born yesterday to her mother and stepfather. 


Since I have no more news, I will tell the story of a patient from my internship who I will call Sadie Cohen. 
Sadie was an elderly Jewish diabetic being treated for an ulcer in her foot, with the hope of preventing an amputation. She had Alzheimer's disease and was in pain She would lie in bed constantly moaning oy-oy-oy-oy-oy as only an old Jewish lady could. It was my job to keep her IV running and she would be constantly pulling at it until she dislodged it. There were no ports or PICC lines back then. They were calling me at all times to restart the IV. When I would stick her with the needle, you would hear "oy-oy-oy-oy-GEVALT-GEVALT-GEVALT! Because of this, I invented the decoy IV, some tubing taped to the arm above the real IV. When she pulled this off, the nurse could replace it.
One day I was called to see her because she was in a coma. I checked the IV fluids and there was an error in pharmacy. Too much insulin had been added to the IV. I gave her an injection of Glucose, and a few seconds after I gave the injection, I heard "oy-oy-oy-oy-oy". I knew she was back to normal. (for her).

Some Random Observations About MCC and Me

This is my 100th post.


Here is a graph showing survival of patients with Merkel Cell Carcinoma by stage at the time of diagnosis.

Relative survival for 2,856 Merkel cell carcinoma patients by stage according to the 2009 AJCC staging system. Percent relative survival was calculated for cases in the National Cancer Database using age- and sex-matched control data from the Centers for Disease Control and Prevention. Stages are as indicated in the figure except for Stage IIIA which could not be derived using this dataset. The curve marked “IIIA*” represents pathologically node positive patients, with the clinical node status unknown or negative. It is anticipated that true Stage IIIA patients (clinical node status negative) have better survival than the line marked with “IIIA*.” Total number of patients was 2,856, and individual substages were as follows: IA = 266, IB = 754, IIA = 124, IIB = 414, IIC = 84, IIIA* = 794, IIIB = 143, IV = 277.  From AJCC Staging Manual 2009.

This refers to stage  at the time of initial diagnosis. I was stage IIB at the time of diagnosis, but I would classify myself as Stage IV diagnosed on November 24, 2010, about 11 months ago. If I can survive another 13 months, I will fall into that 20% who survive long term. Those who survive 2 years almost all are long term survivors.
These patients who survive stage IV undoubtedly have had chemotherapy, so I submit my thesis that, in spite of what Dr. Nghiem says, chemotherapy can prolong survival in Merkel Cell carcinoma.




Al Davis, famed and notorious owner of the Oakland (and Los Angeles) Raiders died last week. I have seen his death certificate on the internet. He supposedly died of heart disease and he had a history of cardiomyopathy. He supposedly died of ventricular fibrillation. He also had Merkel Cell Carcinoma, and had undergone a procedure for dysphagia (difficulty swallowing) a few days before his death. I submit that the full story has not been told. I suspect he died of complications of Merkel Cell Carcinoma.


Bridge. The Fresno Sectional Bridge Tournament was held last week. I played in all 8 sessions, and for the first time since I came to Fresno in 1976, I won the Presidents Trophy for winning the most masterpoints. Thanks to my partners, Bert Rettner and Mark Stern.


So how am I doing? I feel pretty good these days, but my shortness of breath has not improved. The worst symptom of this is inability to speak very long without coughing. This bothers me most when working, as I spend all the time dictating reports into Dragon 10 Medical. The software does a good job of ignoring my coughing. I am using cough drops and taking cough syrup at night, and have few symptoms when not speaking.
My neuropathy has not changed.
I will see Dr. Flam next Tuesday and will discuss  possible treatment with corticosteroids.

Latest Update

Today was the day for my follow up visit with Dr. Flam.
My labs are stable. My shortness of breath is slightly worse, but I can walk at a good pace and climb stairs. (thank goodness for that as we live in a 2 story home). I am not short of breath at rest, and I can sleep lying flat. I have the unusual symptom of being unable to speak for very long without coughing. I can not take a deep breath without coughing. This slows me down at work when dictating radiology reports and limits my ability to carry on a conversation. The treatment advocated by Dr. Flam is a short course of steroids, beginning at a high dose and rapidly tapering over six days. because of the immunosupressive effect of corticosteroids, I will run this past Dr. Nghiem. In the meanwhile he wants me to take a cough suppressant containing codeine. As there is the Fresno Sectional Bridge Tournament this weekend, I will delay this until the Bridge tournament is over.
My neuropathy is unchanged, and when the supply of pills I obtained from a web site promising 90% success rate runs out, I will discontinue them. I would doubt the accuracy of the 90% number.
My weight is stable and my hair is growing back. It is almost long enough to brush.

Here I am, no longer hairless although certainly showing more baldness than when this ordeal began.


I promised to write about my visit to Montreal, so here it is,
My Mother is doing as well as can be expected given her age and loneliness after the death of my Father after 65 years of marriage. Although she has been a widow for about 5 years, who can blame her. Her appetite is not good, but the food at Place Kensington is not the best, so she doesn't eat very much.
Here is the question. At 62 lbs, and at the age of 94, Is there another human on this planet whose weight in pounds is less than 2/3 of her age in years? Somebody not effected by some sort of developmental dwarfism?
Bluma and Lenny Clayman were wonderful hosts for the first 3 days I was in Montreal. Lenny picked me up at the airport and hardly complained about the plane being late. He cooked dinners and drove me around. Truly, they are the best of friends.
My brother Jon Shuster arrived Thursday and we shared a room at the Residence Inn in Westmount. We had a chance to spend time together and catch up. He lives in Florida and We are in California so we don't get to visit very often.
My sister Ellie Shuster came with her daughter Cheryl Cruikshank and grandson David (not supposed to be named after me). He is about 14 months and very cute. He had been walking only 2 weeks but getting around very well. 
My brother Robert is in Montreal and is the go to person for my mother. We got to spend time with him Saturday and Sunday.

We met Alex and her Mom and Dad Saturday for a family Chinese lunch. She is very cute. Her Mom Andrea and dad Ben Urovitch are doing a great job parenting her.

From L to R: Me,Cheryl,David,Andrea,Alex and Ben.
We got to spend time with Robert and his wife Gertie Sunday for brunch.
Afterwards, Mom, Jon, Robert and I sat down for a game of bridge. My mother held her own most of the time.
Friday evening was the McGill Reunion Dinner.It was at the Omni Hotel and one had to step over the protesters to get inside. This did not seem to make much difference as the place was jammed. I sat at a table with old classmates from the Honours Math Physics class. It was the 50th reunion.
Ralph Roskies, who organized the table was stuck first in Newark and then at immigration and didn't make it. Doug Beder was there. He and Ralph were instrumental in my career change from Physics to medicine. I knew I could never compete with them.
David Mayerovitch, Barry Frank and Lorne Mendel were also there.
On Saturday night, we had a mini reunion of members of the McGill 66 medical school class.
About 15 members were present. Hopefully I will be there for the 50th when many more classmates have promised to be there. Thanks to Peter Humphreys for organizing this. We had a delicious dinner at Le Caveau, near the Mcgill campus. It was raining very hard after dinner, and I thank Arnold Zidulka for the ride back to the hotel.
We had a Friday brunch at Place Kensington, for which I ordered food from Snowdon Delicatessen.
We had Montreal smoked meat, pickles, chopped liver, eggplant salad, cole slaw party sandwiches and potato knishes. Oh wait! Ellie left the knishes in the oven and they burned to a crisp. David ate half the party sandwiches (not me).  Still, there was plenty to eat and some leftovers.
Many family members took the time to be there. 

Peripheral Neuropathy: An Explanation

I have symptoms of peripheral neuropathy, which I would like to discuss in detail.

This is a condition in which there is damage to peripheral nerves, both sensory and motor. The common causes are diabetes and chemotherapy but there are other causes. At its worst, patients can develop severe arthritis in the feet which is caused by repeated trauma, because the protective mechanism of pain sensation is not present. This is termed "Charcot Joints".

Symptoms include pain and numbness in the hands and feet. The distribution in the feet particularly and to a lesser extent in the hands is described as "Stocking numbness". This is numbness that goes from some point in the leg to the toes like a stocking or sock, rather than in the distribution of peripheral nerves and allow distinction from other causes such as a slipped disc or nerve injury or in the hands to distinguish from neck disc or carpal tunnel syndrome.

In my case. there is also dryness and clumsiness of the hands due to motor nerve involvement and  more subtle sensory deficiencies such as loss of proprioception which allows your brain to know where your fingers are. I find simple tasks somewhat challenging, such as turning the pages of a newspaper or separating one coffee filter from a stack, or buttoning my shirt. It has also resulted in spilling a cup of coffee on my lap and shattering the glass coffee mug.

fortunately, I have had little pain but there is the occasional shooting pain in my feet.

Dr. Flam suggested Vitamin  B Complex which I began taking. I searched the internet and found a company that claimed to have 90% success treating this condition with their fat soluble version of Vitamin B. I bought a so-called 3 month supply for $145. they suggested 4 capsules daily, but upping the dose if it did not work, so the final dose would be 12 capsules a day or $140 for one month supply. This has not been effective and as they offer a 3 month money back guarantee, I will try to get my money back, without much optimism. So, its back to the pharmacy for Vitamin B Complex. At least it is an inexpensive treatment which I don't think will work.

Oh well, better to live with peripheral neuropathy than die of Merkel Cell carcinoma.

Here is a link to a Mayo Clinic artticle about peripheral neuropathy.

Link to Mayo Clinic Article

I'm Back!

I am back from Montreal. It was a wonderful visit. There is much to talk about and I will do it in a future post.
Here is a photo of my mother, Isobel who weighs only 62 pounds but seems to otherwise be in good health. I am on her far left, Jon on her right, and Ellie and Robert standing.