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.

Radiation Pneumonitis, No Evidence of Cancer!!!!!

Today I spoke with Dr. Nghiem. He told me that Merkel Cell Carcinoma looks like any other malignancy when it spreads to the lungs, round smooth nodules. It typically goes to the lungs only late in the disease when there is cancer which is widespread. He will look at the images on my last blog and have Dr, Parvathaneni look at them also and get back to me. I so much appreciate his responsiveness. 
I called Dr. Flam this morning and he agreed to see me on an urgent basis. I had labs done and my counts are improving. HGB is up to 12.3, WBC up to 5500. We did a baseline chest X-Ray and I must say that it looked almost normal. It amazes me how much more we see on a CT scan of the chest than on a routine X-Ray. We reviewed my PET/CT images. He examined me and I went for a walk while measuring my O2 Sat. This is a simple measurement with a device clipped to the finger which measures the percentage of oxygen in the blood compared to the maximum. It should run in the high 90's. It was 95% at rest and on walking, went up to 97%. These results indicate good function.
Dr. Flam has come to the conclusion that this is radiation pneumonitis, and the predominant area of involvement is the area which was irradiated. There are other areas involved also which he says is not uncommon. It is more common when chemotherapy is given at the same time as I had. The treatment if symptoms require it is with steroids. We would like to avoid steroids because of the immunosupressive effect which is not desirable with MCC.
He is fine with me sticking with my plans to go to Montreal and I will bring pills for a course of steroids with me in case they are needed. He suggested I delay my flu shot until I get back but wants me to wear a mask on the airplanes.
I have to thank Dr. Flam for seeing me in the middle of an exceedingly busy day. 
Bottom Line: No Evidence of Cancer. As good a result as I could hope for. Radiation Pneumonitis. A temporary inconvenience.
On to Montreal.

My PET/CT Results: Good News and News of Unknown Significance

This will be a long post.
I have been complaining of increasing shortness of breath lately. The symptom is not disabling but is disturbing. I have been thinking I might have lung metastases, and because of this, I have pushed up the timing of imaging to have my scans done yesterday. Before I get into the findings, I would like to fully describe the symptoms. I have little tolerance for exercise, getting short of breath with rapid walking. When I take a deep breath, it seems to catch and make me want to cough, I have difficulty modulating my voice and sometimes have to stop speaking to cough. I am not short of breath at rest.

Coronal CT Image

On this coronal image, there is air space consolidation adjacent to the heart, more right than left. There is also some focal peripheral consolidation.
(Right in patient is on viewers left)
Consolidation means fluid or other tissue where lung should be)

Here we can see that there is consolidation on both sides.

Axial CT Image

Here, we see a large abnormal area of air space consolidation to the left of the heart and several additional abnormal areas of lung consolidation on both sides.

This image shows some similar areas in the left upper lung.
These areas are described in the PET report as showing uptake of the tracer (the indicator of abnormal activity) which probably indicate infectious or inflammatory origin. The areas adjacent to the heart are described as also taking up the tracer, most compatible with post radiation inflammatory change.
There is no uptake in the area of the original mediastinal tumor, reported as a "Positive response to interim therapy".
Both the PET and CT reports attribute all this to inflammation and not neoplasm. My experience with almost all forms of cancer is that metastases are smooth round nodules in the lung without inflammatory changes around them.
However, I am not yet jumping for joy.
I have called Dr. Flam to discuss this and expect to hear from him tomorrow. I have also tried to reach Dr. Nghiem to get his take on this. Nobody I have talked to has ever seen what metastatic Merkel Cell Carcinoma looks like in the lung. We also need to find an explanation for the findings assuming they are not MCC.
In the meanwhile, I expect to go to Montreal as planned on Monday and deal with this when I get back.
To sum up, at first look, this seems like good news, but after many disappointments, I retain a guarded optimism.
I will leave Monday for Montreal, where I will see my 94 year old mother, perhaps for the last time. She has lost weight and recently weighed as little as 63 lbs. While there, I will have a chance to visit with my sister Ellie, her daughter Cheryl and grandson David (not named after me) from Edmonton, my brother Jon, visiting from Gainesville Florida and my brother Robert, his daughter Andrea, her husband Ben, and granddaughter Alex.
In addition, it will be my 45th medical class reunion and my 50th undergraduate reunion at McGill.
These can not be missed.
It seems like only yesterday, and yet also like an eternity ago when, on a visit to Montreal, I put my hand on a spot right in front of my ear and fount a mass. It was only 17 months ago. I have been through two major surgeries, 3 episodes of radiation treatments, 2 courses of chemotherapy, a port insertion, innumerable blood draws, and about half a dozen sophisticated imaging studies. These are all further documented in my earlier blog posts.
I continue to fight!

Update From At Sea

Actually this post is sent from in port at Ensenada Mexico but "at sea" sounds better.

A new post to my blog 9/24/11.

I am writing this on the Sapphire Princess as we await debarkation from the Port of Los Angeles. Tomorrow, we stop at  Santa Barbara, San Francisco on Tuesday, San Diego on Thursday and beautiful downtown Ensenada on Friday. 

I had my appointment with Dr Flam on Wednesday. My hemoglobin is down to 11.2, my white count down to 4300, but my platelets are normal. I told him I am having mild shortness of breath, which he attributes to anemia. He was disappointed that I have continued to take zinc for my saliva production, although he never asked me to stop it. He says zinc can promote anemia and low WBC by interfering with copper metabolism. I have stopped the zinc.

I am also having a little more discomfort related to eating and drinking. I think this is related to my esophagus. I think it is most likely due to scarring from the radiation and not due to recurrence of Merkel Cell Carcinoma, but this will await imaging and other studies. I would like to postpone any more evaluations until I get back from Montreal on October 17. 

Meanwhile I have planned to work about 3 half days per week while in Fresno.

My neuropathy has not changed. It is manifest by relatively painless numbness in my hands and feet. there is dryness of my hands and loss of fine motor coordination. I have had a few episodes of dizziness on standing up (postural hypotension). Once, I had to quickly sit down or I would have lost consciousness. Dr. Flam says the neuropathy can effect the autonomic nervous system and this may account for it. My blood pressure was 90/65 at his office. I am to increase the amount of salt in my diet.

I have been taking a Vitamin B product advertised on the internet said to have a 90% effectiveness in relieving peripheral neuropathy. 

Week 1.  2 capsules twice daily

Week 2.  3 capsules twice daily

Week 3. 2 capsules 4x daily

Week 4 . 3 capsules 3x a day

Week 5.  Well, you get the idea. the dose increases until there is a response or you give up.

A 3 month supply of 360 capsules cost over $140. At this rate it isn't even a 2 month supply.

I have just started week 3, without any improvement.

There is supposed to be a money back guarantee. Without much faith in the product, I have little to lose by trying. Dr. Flam did recommend Vitamin B complex for neuropathy.

Well, it is time for the mandatory safety drill. This is our 14th cruise. I think I know what they are going to say.

For the next week, I plan to concentrate on having a great time and put this Merkel business out of my mind.

September 29, 2011

This cruise has been delightful. A chance to get away from the day to day activities. There is plenty of food, and my appetite has been pretty good. My taste buds are almost normal and my dry mouth has improved. I continue to have mild symptoms of mild pain presumably in the radiated area of my lower esophagus, which is worse on eating. The 

food does not stick in the esophagus, and it does not diminish my appetite. I also have less exercise tolerance than I did, and when I take a deep breath, I almost feel like I need to cough. 

There will be a big meeting in Seattle involving researchers and patients with Merkel Cell carcinoma, on Tuesday, October 25, which Judy and I would like to attend. Because of this and my symptoms, I have called Dr. Dan Stobbe and inquired about the timing of a PET/CT after radiation. He said I need to wait six weeks. Since my treatments ended August 15, I can have the scan. I have arranged this with him for October 5, next Wednesday. I am waiting to hear back from Dr. Flam to get the official approval of the study. I am hoping to see Dr. Nghiem, particularly if my scans are positive, around the time of this meeting.

September 30, 2011

I thought I could put all thoughts of Merkel Cell carcinoma out of my mind for the week of the cruise but this is not possible. Once you have a diagnosis of cancer, every little ache or pain makes you think about the spread of the cancer as the cause. I have to know sooner rather than later whether my symptoms are caused by scarring or by Merkel cell carcinoma growing back after chemo and radiation. All is arranged with Valley Metabolic Imaging and with Dr Flam to proceed on Wednesday.

This will leave me with a very busy week.

Saturday: Fly back to Fresno

Sunday: Work a half day reading CT scans at Kaiser.

Monday: Bridge in the afternoon

Tuesday: Work a half day at Kaiser. Appointment with Dr. Weinberg (ENT) for follow up on my hearing loss.

Wednesday; PET/CT, ZZTop at the Fresno Fair7

Thursday: Work a half day at Kaiser

Friday: Bridge, Yom Kippur

Saturday: Work a half day at Kaiser (I am not very religious, but I hope to go to Yertzeit services in memory of my father in the afternoon)

Sunday: rest

Monday: Off to Montreal for a week.

Back From Philadelphia

It was great to have the opportunity to visit with Mike, Leanna, and Sammie (age 3) and Eli (age 1).

Here is a photo of me with Sammie and Eli. As you can see, there is some new hair growing on that chemo head of mine.
I am feeling pretty well these days, and have agreed to work Tuesday and Thursday mornings this week. I have an appointment with Dr. Flam on Wednesday. That should be a courtesy visit, labs, flush Mediport, set up appointment for PET/CT quick physical, and out. Probably, I will be there less than 4 hours.
On Saturday, Judy and I leave for a 1 week coastal cruise. I wanted to drive to LA from Fresno to take the cruise, but common sense prevailed, and we will fly there.
After we return, I have one more week in Fresno, with visits to Dr Weinberg (to check my hearing) and Dr John (follow-up of radiation treatment). I plan to work 2 half days that week.
On October 10, I leave for Montreal to visit my mother. My sister Ellie will visit from Edmonton and my brother Jon, from Florida. Robert lives in Montreal, so we will have a reunion of all 4 siblings with my mother. It will also be the 45th reunion of my McGill medical school class and the 50th year reunion of the McGill undergraduate class, with a dinner planned with fellow alumni of the Honors (Honours) Math Physics class.
I return home to reality on October 17, with my PET/CT to be scheduled for that week. That is when I find out whether I have another reprieve or whether I will be looking for an experimental protocol.
We have a family cruise planned for mid December with all our children and grandchildren, and I am determined to be on that cruise.

Philadelphia on 9/11/11

A new post to my blog 9/11/11.

I am writing this on the flight from San Francisco to Philadelphia, on 9/9/11. I am so grateful to be able to take this trip to see Mike, Leanna, and our 2 grandchildren, Sammi and Eli.

I hope to have a photo to add to this post.

Things are rapidly improving. My sense of taste is coming back. For the first time in months, I was able to taste the slightly sweet minty taste of Glide Dental Floss, something that makes Rocky, our dog, salivate. Today, at the airport, I ate a bagel, and while I found it dry, I almost finished it. Most foods still do not taste as good as I remember, and leave a bad taste in my mouth.

My peripheral neuropathy is unchanged. I am trying a Vitamin B fat soluble product which is marketed as having a 90% success rate. I am skeptical about this, but it can't hurt. I will report on my progress and you can respond by email if you need the details.

I have been able to work. At Kaiser, I did 2 half days last week and 2 this week.

I do note that while walking at a rapid pace from the car to the terminal, I was short of breath. Hopefully, this is due to lack of exercise and remaining anemia.

Here is a report of a conversation between Gary and our 3 year old granddaughter a few days ago.

Gary "What do you want to be when you grow up?"

Sara "A doctor"

Gary "So you can help people?"

Sara "Yes, I'm going to be Dr Sara"

Sara "Wait, I'm not going to be Dr. Sara, I'm going to be a different Doctor. You know Papa? I'm going to be whatever kind of Doctor he is.

They say grandchildren are your reward for not killing your children. Here is proof.

A brief comment about  American Airlines price gouging.

I booked flights from Fresno to Montreal to visit my mother, Oct 10-15. I later found out my brother Jon will visit from Florida, and my sister Ellie will visit from Edmonton. In addition, there are McGill class reunion activities going on that week. I thought it would be nice to extend my trip 1 day to leave the 16th. So the question is "how much for the change?"

$150 change fee. OK, High, but I'm willing to pay it.

$350 in addition as the fare structure at the time of this new booking has increased.

Like I said, price gouging.

On 9/10/11, I called American Airlines again after learning that a one way flight from Montreal to Fresno on October 17 was only $300.

I was able to do the change for less than $100.

Today is 9/11/11, the 10 year anniversary. I think back to where I was at the time the disaster unfolded. Judy and I were at Lake Tahoe with Judy's mother, staying at a condo at Lakeland Village. We actually owned the condo which management rented for us most of the time. Our son Gary called and we turned on the TV shortly before the second plane hit the World Trade Center.

We were talking about the changes in the past 10 years. Judy's mother died of colon cancer. My father developed dementia and died of bile duct cancer. Brian, our middle son was married and is since divorced. Gary, our oldest son was married to his first wife, Margaret, and our first granddaughter, Eva was an infant. Gary has since remarried, and has two more daughters. 

We have since sold the rental condo in Lake Tahoe.

I didn't have cancer.

So many changes in our lives in just 10 years.

We took photos but because we left the cable to connect the camera to my computer, the photos await my next post.

I am having a new symptom. Recently, I have had some dizzyness on standing. Today, I stood up to walk a short distance from one sofa to another, and briefly lost consciousness. No injury. I am presuming this is a vaso-vagal reaction. I will need to be careful getting up.

Things are Looking Up, Lots of Travel Plans.

Yesterday was another visit with Dr. Flam. I was his first patient and things ran like clockwork.
My labs were encouraging. WBC is still slightly low at 4200. Platelets are  still slightly low at 101,000, but hemoglobin is up to 11.9 grams. I am feeling much better. My taste buds are recovering, but my mouth is still dry. The candida has almost disappeared. I have to brush by tongue 2-3x daily. It makes me gag. I still have hearing loss which I am afraid will be permanent but I have a follow-up ENT appointment. I have mild peripheral neuropathy, manifest by slight numbness, dry skin and clumsiness. I guess I should be grateful there is no associated pain. I hope it gets better, but I am not optimistic. Vitamin B complex does not seem to make a difference. 
The good news is that I have made new travel plans.
Montreal, October 10-15. I will combine a visit to my mother, my brother and family and old friends, Bluma and Lenny, with Mcgill class reunions, 50 years from undergraduate, and 45 years from medical school. Judy will not be accompanying me on this trip.
Plans previously made include Philadelphia Sept. 9-15 and our coastal cruise September 24-Oct 1.
When I get back after Oct 15, the moment of truth will be upon me. That is a follow-up PET/CT.

Substantial Improvement Since my Last Post

Last Tuesday, I had a brief visit with the nurse. My labs are still not great, but my Hemoglobin is up to 11gm from 9.9. My white count and platelets are slightly low. I have been off parenteral nutrition since last Saturday morning and have begun eating much better. I am still losing weight but I suspect much of that as retained fluid. My taste buds are improving daily. Last night I had a small steak and it tasted like, well, you know, steak! 
The white coating on my tongue has improved, but not disappeared, so I renewed my prescription for the lozenges for another 10 days.
I definitely have more energy. I hope I am not going to overdo things, but I have decided to accompany Judy to Philadelphia on September 9 to visit Mike and Leanna and our grandchildren Sammi and Eli.
Pet/CT in about 2 months.
Visit to Dr Flam next Tuesday.
After we get back from our coastal cruise on Oct 1, I will plan a visit to Montreal to see my mother who continues to lose weight.

My 71st Birthday Photo

This is what it is all about. Here is a photo of me with 3 of my granddaughters, Eva (age 10), Sara (age 4) and Bel (age 2).

Status After Final Radiation Treatment

My last radiation treatment was Monday, Aug 15. Take me out of the oven. I'm all done. My esophagus is cooked. In fact it feels like it was burned.
Yesterday was my visit to Dr. Flam. See the rant below.
My labs were OK except for my Hemoglobin which was 9.8. I needed another shot of Procrit, which insurance wouldn't pay for as the appointment was 6 days and not 7 days after my last shot. No big deal. I had that done today.
I have gained 4-5 pounds since my last appointment and we agreed to stop the TPN, tapering it off with the last treatment on Friday night. Saturday morning, I get to remove the Huber needle myself and will have just skin covering my port.
I have had some burning in my esophagus and heartburn at night. This should resolve as my esophagus heals. Food still has no taste. I seem to have a form of anorexia nervosa.
My tongue was white and Dr. Flam diagnosed Candidiasis (Thrush). He put me on Mycelex, Generic.
It comes in "lozenges", which are actually white chalky pills to be sucked until they dissolve, three times daily. Surprisingly, they are not as obnoxious as they look. Perhaps getting rid of the candida will help restore my sense of taste.
I have no ankle or foot swelling. My blood sugars have been behaving, as I have been self-testing as required 3 times daily.
I have been drinking up to 3 bottles of Boost Plus daily and eating a small amount in addition.
I have noticed that my hands are always dry and there is slight numbness in my fingers. I have become clumsy, dropping things and with slight tremor with small motor tasks. (Including typing this). This seems to be a mild peripheral neuropathy as a result of the chemo. I think I have similar but less obvious neuropathy in my feet. Dr. Flam told me to take Vitamin B complex for this but I doubt this will make a difference, as I have been taking multivites all along and vitamins are added to the TPN. Nevertheless, it couldn't hurt.
Dr. Flam offered two possible plans for follow-up. CT in 1 month if I absolutely had to know if all this worked as soon as possible. PET/CT in 2 months as the PET would not be accurate because of residual inflammation in 1 month. I prefer to wait until after our cruise at the end of September so will have the PET/CT in mid October.
Meanwhile I see the nurse in 1 week and Dr. Flam in 2 weeks.
Sunday afternoon,  we had the Fresno Shusters for birthday cake to celebrate Judy's birthday. That was a nice distraction.
Last night I went to our monthly poker game,  It was great to get out even with the TPN running. I left early, ahead by 80 cents. Before I left, I had a small slice of Mary Callender Lemon pie. It tasted like they forgot to put the sugar in it.


Friday, I plan to return to the Bridge Club.


Here is the rant. 
My appointment was for 10 AM.  At 11, I was weighed. At 11:50, I was called back for the nurse to draw blood from my port and replace the Huber needle. I was not seen by Dr. Flam until 1:30, and did not get out of the office until close to 2:00 PM.
Late in the afternoon, Judy went to pick up the prescription, which was supposed to have been called in to the pharmacy. They didn't have it.
There were many patients grumbling in the waiting room, some very sick and waiting to have chemotherapy. 
There has to be a better way. Even the Cheesecake Factory gives pagers to those waiting for a table.
In Dr. Flam's defense, his Physician's Assistant recently left and has not yet been replaced, and he was seeing about 100 patients that day. I pointed out to him that the waiting times were excessive, and he shrugged it off to being very busy. He gave instructions for me to be the first patient of the day when I see him in 2 weeks. This does not change the fact that the office could be organized to reduce waiting times for all.

Into The Home Stretch. Review. Details of TPN

I have only two more radiation treatments to go.  It will be all over on Monday. 
To recap, I originally found a lump in my face on the left in front of my left ear. There was also a small nodule in my left parotid (salivary) gland. Surgery and imaging showed one or two involved lymph nodes in my neck on the left.
After the surgery, I had radiation treatment only to the area of involvement. At that time, I was advised that the chance of complete eradication of the local disease was 80%. However, there was a 50-50 chance that the disease would appear elsewhere. If fact, I was on the wrong side of those odds, and the disease reappeared as a mass adjacent to my lower esophagus. An experimental treatment of a low dose of radiation was attempted in the hopes of stimulating my immune system to destroy the mass. 
A follow-up CT scan showed the mass only slightly smaller, but a new tumor mass appeared in the small bowel. This was removed by laparoscopic surgery.
We then proceeded to chemotherapy and after 3 cycles of Cisplatin and VP16, the tumor was barely identifiable. No other tumor site could be seen.
The residual tumor site was treated with radiation and chemotherapy used to enhance the radiation. This was Taxotere. After 3 doses of the Taxotere I was too sick to continue taking it and it was stopped.
The result of all this is that, to my knowledge, there is no residual tumor in my body at this time. That's my story and I'm sticking to it.
I am recovering from the Taxotere gradually. My WBC have risen to 2900 from 1900.  My Hemoglobin has decreased to 9.9 gms, and I was given a shot of  Procrit for that. In my last post, I talked about inability to eat. I have been on TPN (Total Parental Nutrition) which is basically intravenous feedings.
On the first night after 3 days of 2 liters of fluid replacement and TPN, I developed ankle swelling. This rapidly resolved with elevation of the feet. I was having severe pain and burning in the lower chest when eating or drinking. This has largely resolved. I have had episodes of diarrhea, which have not resolved. Food tastes terrible, as if I have anorexia nervosa. This is due to the chemo and should begin to resolve. I am drinking 2-3 bottles of Boost Plus daily adding 700-1050 calories per day. Yesterday, I had 2 eggs. Today, I ate macaroni.
I expect no more than 3 weeks total of TPN.
This TPN is no simple matter. It began with delivery of 2 large boxes of material for one week's supplies. This included 7 bags of the fluid which looks like pale skim milk and has an odor almost like breast milk. 7 vials each of vitamins and other additives also were included. These  need to be refrigerated and removed 1-2 hours before use. I set an alarm on my iphone to remind me.
A small infusion pump about the size of a paperback novel provides the power.It runs on a 9 volt battery which needs replacement daily. A disposable device is to lock in place which is part of the tubing that goes from the bag to my Medport. The procedure is as follows. The vitamins are added to the bag. The tubing is locked into the pump. The pump will often complain that it is not locked correctly. The pump is then primed. The port is flushed, and then the tubing attached to the port. The infusion is then ready to start. Needless to say, many things can go wrong. One night, the infusion pump thought it was still pumping from the previous night's residual and delivered only about 30 cc instead of 1800 cc.
I finally have it figured out, but a person untrained in medical procedures will find it easy to go wrong.
I also need to check my glucose 4 times a day. The device for that needs little blood. It is almost painless, but the first night, after 2 tries and error messages, I deferred further testing to the next day. I think I am still doing something wrong or there is a flaw in the device as far as sterility is concerned.
More on this in my next post.
I learned about the "Donut Hole" Because I have reached the donut hole in my Medicare Part D insurance, I am paying the full cost of this TPN. In another post, I hope to discuss the complexities of the donut hole and the inability to get straight answers from providers, one of whom told me it would be $4 per day and then called back and said $100 plus daily not including supplies. Total about $1000 per week. I can afford to pay (in spite of the falling stock market), but it is a powerful incentive to get off the TPN as soon as possible.
What happens to those who don't have the money to pay?

I Am Put On IV Hyperalimentation

I am writing this while receiving the third and last 2 liter IV fluid infusion over the past 3 days.
Since my last post, I have not felt up to writing down my thoughts and feelings. I will start with a litany of complaints.
Everything tastes terrible. It is very hard to force food into my body when everything tastes so bad.
My mouth is very dry. My tongue feels like sandpaper. It is white, with cracks in it. I don't think I have Candida, (Thrush).
I am having difficulty swallowing. I can get stuff past my throat but it does not go through my esophagus easily, and creates discomfort on the way down. I also have pretty much continuous heartburn.
I am having upper abdominal cramps. I had severe diarrhea earlier in the week. This has subsided.
As a result of these complaints, I have decided to stop the Taxotere, with the agreement of Dr. John who examined me on Monday. In addition to these complaints, it turns out my white count was down to 1900. The purpose of the Taxotere was to enhance the effect of the radiation treatments and I think they need no enhancement.
I continue to lose weight and am not ingesting adequate nutrition. I saw a dietitian yesterday morning and the choices or me are tube feedings, intravenous hyperalimentation, or to force enough food down by mouth. I opted for the latter, but failed. Tube feedings could be done through a naso-gastric tube or a percutaneous gastrostomy. I don't think I could take a nasogastric tube for very long so this narrows the choice to IV feedings or a percutaneous gastrostomy. This is a tube placed through the abdominal wall into the stomach.  Bottom line: IV nutrition for me.
This will be set up this afternoon. Apparently Medicare does not cover all the cost, but I will only have to pay $35 per day.
I have only 8 more radiation treatments left and am off the taxotere, so I don't think this will go on for more than a month.
I am also back to another series of Leukine for my white count.


I am writing this after a meeting with the home infusion nurse. She has been very helpful in getting this all set up and will be back tomorrow to watch me set it all up for myself. As a trained physician, I think I can manage all this without great difficulty, but without such training, it would be a real challenge.
Supplies delivered this afternoon included multiple tubes and pre-filled syringes, vitamin doses to add to the fluids, plastic bags each containing 1900 cc of what looks like low-fat milk, a battery powered infusion pump, and supplies needed to test my blood sugar.
All went well except that I was concerned about a small amount of air in the infusion line. I removed it from a side port using the needle to add the vitamins to the infusion. All is set up and running. The infusions last 18 hours giving me only 6 hours free of the pump which is neatly housed in a back pack they provided.
The pump is not entirely silent and will take some getting used to, not unlike my dog snoring (he's much louder). I suspect it will be one reason I'll be sleeping alone tonight. The other is that I will have to shower during that 6 hour window.
I did manage to down 3 bottles of Boost Plus today so perhaps if I can continue that, I can shorten the infusions.
No IV pole, so I have rigged something up with a camera tripod. I'll ask for the pole tomorrow.
Thanks Karen for your patience and instructions in getting all this set up.
I am still hoping to get to Good Company Players to see Eva in the final performance of her drama classes. That will take place Friday afternoon about 1/2 hour after I remove the infusion during my 6 hour break.

Closing In On The Mid Point Of My Radiation Treatment

I have to say that at the end of last weekend I was getting very discouraged. I was taking daily shots of Leukine because my WBC's were down to 3100. I had a reaction of chills, and probably fever once. I was having nausea and almost constant diarrhea. My weight was down. I had no appetite. No food tasted good to me. I understand the need for the radiation, but the symptoms are mostly related to the Taxotere, being given to enhance the effect of radiation, rather than for its chemotherapeutic effect.
Today, I had my 12th of 25 radiation treatments and a visit with Dr. Flam. I also had the third of what I expect to be five infusions of Taxotere. I am feeling substantially better. I attribute this to my bowels returning to some semblance of normalcy. My WBC is up to 4400, not a huge improvement but better. My hemoglobin dropped from 10.9 to 9.9.  Because of that, I was given a shot of Procrit, (epoetin alpha), to stimulate the production of red blood cells. Platelets were down slightly from 129,000 to 104,000. 
I was feeling so discouraged that I wanted to discuss discontinuing the Taxotere and just going with radiation,but now I feel I can stay the course.
Thanks to Patty at Dr. Flam's office, the issue about the coverage for Carofate has been resolved. Apparently the insurance will only cover one generic brand, and I paid $7 for 3 weeks supply. The pharmacy originally obtained the wrong brand, and I asked what it would be out of pocket. $500. What a messed up system!
Dr. Flam suggested last week when I complained about the logistics of getting everything done suggested I come in at 7:30 AM today. He said I would have my labs done, see him get the infusion started and get to Radiation Therapy by my 8:30 appointment. This would work better than having the radiation first, and then coming to get the labs started after 9:00 in the usual traffic jam it his office. The techs at XRT were skeptical that this could be done and they were right. It all ran together at 8:30 when I was about to leave for XRT and Dr. Flam was ready to see me. Nevertheless, it worked out better than last week.
Judy has been wonderful. This week, she has been transporting Eva, our 10 year old granddaughter to Good Company Players acting camp, for 9:00 AM and picking her up at noon. Today, she woke up to take me to treatment for 7:30, took the dog to the park, picked up Eva to take her to her camp. Later, she picked Eva up and picked me up afterwards, and we had Eva here for most of the afternoon.
Tomorrow, I will drive myself.
Go Giants! It looks like we will get Beltran from the Mets.
Now, if we don't need to use Barry Zito we should have a good shot at a repeat championship.

Not Feeling Well

This has been a difficult week. I have been uncomfortable, probably due to the injections of Leukine. The constipation has disappeared and I am dealing with the opposite problem and with accompanying cramps. Last night I had shaking chills, and about 4:00 AM, the cramps woke me up and my nightshirt was drenched. My appetite and sense of taste are gone. I have to force myself to eat. I discussed the need for further chemo with Dr. John and he encouraged me to stay the course. I am not really convinced that the chemo is useful at this stage, but I plan to stick it out.
Today is my Granddaughter, Bel's second birthday party. I will make a brief appearance.
As to a replacement for Carofate, the generic that CVS found is $300, compared to $60. My insurance does not cover that brand and I can't blame them. They have another supplier which I think will be approved.
Thanks Patty at Dr. Flam's office for your help with this.

Not a Good Day Today, + Real Estate Discussion (off topic)

Wednesdays are the day for radiation and chemotherapy. Radiation Oncology and Dr. Flam are in the same complex, owned by St Agnes Hospital. The Oncology group rents space and is an independent entity while Radiation Oncology is owned and run by St. Agnes. Surprisingly, perhaps, the Oncology practice is much less efficient from the patient's point of view.
After my radiation treatment, I arrive for my chemo just after 9:00 AM. the waiting room and the adjacent corridor are filled with patients. I sign in and find a rare empty chair. The folks in the waiting room can talk of nothing except to express their unhappiness about the long wait. It made me feel guilty, because when I worked at a place called "La Clinique Medicale Des Groupes" in Montreal, in an average morning, a total of 25 fluoroscopic examinations were scheduled, with the last usually completed at 1:00 PM, and the latest appointment was 8:30 AM. 


At 10:45, they finally call me to the lab, where they weigh me and send me back to the waiting room, because my blood draw is to be from my port. The blood draw and port access was done about 11 AM. I finally get to see Dr. Flam around 11:15. I am told he has 90 patients on the schedule for today.
My lab results are discouraging. the Hemoglobin is stable at 10.9, but my white count has dropped to 3380. My platelet count is not bad at 129,000.
Because of this, I will need shots of  Leukine. This is given subcutaneously, for 5 days, after oral Tylenol, 325 mg tabletsx2, and Claritin.  Potential side effects are allergic or flu-like reactions, hence the Claritin. and musculoskeletal pain, hence the Tylenol.
There are two areas where the chemo is given. One has about 16 chairs and two rooms with a nursing station between them. It is very busy and noisy, without internet access, and without windows. The second, called "The Clinic" is bright, relatively quiet, and has wireless internet. I ask to go to the clinic, and this is agreed to. However, when I get there, I am sent back because I reported a "Reaction" to the Taxotere last week. The reaction I reported was slight flushing and warmth around my ears. I return to the nursing station just after 11:30, but they have no empty chairs to give me chemo. I am seated at a bench to await an empty chemo chair. By this time, I am uncomfortable, getting hungry, and needing to use the bathroom. I get up and inform the nurses to call me on my cell phone when they have a space for me and that I am going home. We finally agree that I can go home and return around 1 PM.
I go home and have some lunch, and fall asleep for a few minutes. Judy goes to the Pharmacy and gets the Tylenol and Claritin. She also learns that my insurance will not cover the refill on Carafate, and they want $50 for a small bottle which, taken as directed, will last 1 week.
I return for my chemo and injection. I end up home about 3:00 PM.
It is now after 5 PM. I am having some pain in my lower chest and back. I presume this is from the Leukine and not from my esophagus, but I will be very nervous if the pain gets worse. I am also feeling mild nausea. I may need to self-medicate for that.
I have said that when you go to see Dr. Flam, you must park your "Type A" personality at the door and go with the flow. Today, I could not do that. I complained to the nurse, and that's how I learned that he had 90 patients scheduled for today. I complained to Tom Hackett. an associate of Dr. Flam, who looked in on me today, and I complained to Dr. Flam. It was not all useless venting. I learned that they can see me at 7:30 AM, get my labs done, and start the chemo, and then get me to my Radiation treatment with the chemo running. If I wasn't so "Type A", I would never have learned about this.
Next Wednesday, I will be there at 7:30.
Why would Blue Cross deny payment for Carafate? Do they think it would be cheaper than treating me for esophageal perforation? I will try to contact them tomorrow to find the answer to this question.
I am wondering about the plan to have chemo with radiation to enhance the effect of radiation. Is it worth it? Is it going to be any different than if I had radiation alone? If Dr. Nghiem had not endorsed this plan, I think I would quit the chemo. I will talk about this with Dr. John tomorrow morning.


Real Estate Discussion (Off Topic)
We are hoping to move from our large 2 story home into a smaller house on one level with no pool. We have found 2 different homes which were suitable and made offers at what we thought were reasonable amounts. Surprisingly, other buyers came in at higher offers and we did not get the properties. There is an interesting trend in housing here. I called it a "Squeeze". Smaller homes are selling rapidly and values are going up. Larger homes are not selling and values are going down. For those trying to downsize, this is not a good trend. Perhaps the reason is the fear of rising interest rates, either from the stalemate on the government debt ceiling, of from the government printing money causing inflation.

Esophagus Radiation with Chemotherapy Enhancement

This phase of my treatment has begun. 
On Tuesday, I went for the first radiation treatment to the mediastinum. New markings covered with tape were placed on my chest. The actual treatments consisted of six short bursts of radiation, with the machine repositioned for each burst so the tumor is shot from many different angles. This is done to reduce the radiation dose to structures near the treatment site. These include my heart, lungs, spine and spinal cord, vagus nerve and liver.
My appointment was for 8:00 AM, but there is a new regulation from Medicare which requires the Radiation Oncologist to be on site during the treatment so it was delayed until after 8:30. The schedule has now been changed so treatments will be at 8:30.
Yesterday, I went for my radiation treatment followed by chemotherapy.
After the treatment, I went to Dr. Flam's office in the same complex, and the waiting room was as crowded as the Los Angeles Freeways will be this weekend. I had my blood drawn. The results are good. Platelets normal at 137,000, White count normal at 4,900, and hemoglobin low but stable at 10.9 g/l.
After a brief visit with Dr. Flam, my treatment began. Through the port, I was first given 32 mg of Zofran over 30 minutes to prevent nausea. then, over the next 2 hours, I received 57 mg of Taxotere. Because this was the first dose, they gave it slowly to make sure I did not have an adverse reaction. The only reaction was some flushing and a slight burning sensation around my ears. I did not get sick but was tired afterwards and was mildly nauseated.
I drove myself home, and rested in the afternoon.
Brian is visiting from Vancouver. Gary and Dana invited us for dinner and I was able to go and eat some BBQ chicken and a hot dog, with a small amount of strawberry pie for dessert, so the nausea was not a factor. I drove there and, being tired, drove myself home before Judy and Brian left.
Today was treatment #3 of 25. There was also a status check with Dr. John. There is nothing much to report about this, but I did ask him if I should show up on time for my 8:30 appointments, because if he was going to be late, so was I. He did admit to having a conference on Thursdays which do not end until 8:45, so I will not rush to be on time on Thursdays.
It looks like the main side effect to be aware of is esophagitis, with possible development of a stricture. (An area of narrowing from scar tissue which can obstruct the movement of food) 
As a precaution against this, Dr. Flam wants me to take 20 mg. of Prilosec twice daily and Carafate Suspension, 1 tablespoon after meals and at bedtime. Somehow, my dead taste buds still think it tastes terrible.
Today, I am feeling well, mildly constipated, with no nausea.
I don't expect significant symptoms for the next 2-3 weeks.

The Plan is Finalized

I quote from my brother Robert.  "The reason people retire is so that they will have time to visit doctors."
Between now and August 15, I will have 25 visits for radiation, 5 visits for chemotherapy, 5 evaluations by Dr. Flam, 5 status checks with Dr. John and a visit to by internist, Dr. Holmes. I think I also have a dental check-up coming up.
Today, it was Dr. Flam. You can't escape his office without labs. 
The bone marrow suppression from my prior chemo continues.
White count is down from 5900 to 3500, Hemoglobin is down to 10.9 from 11.2. Platelets are still normal but down from 182,000 t0 158,000. 
My symptoms are unchanged.
The most troubling is still hearing loss, with a buzzing sound when there is speech, particularly from male voices, including my own. Female voices seem to sound tinny. I hear the sounds, but its like a foreign language, of which I know many words but miss enough to often lose comprehension. The buzzing sound is something I can't find reviewing the web for hearing disorders.
The dry mouth and loss of taste continue.
The plan is to have radiation treatment with chemosensitization. I was reluctant to have 5FU, and the first words from Dr. Flam were "I don't want to give you 5FU." The drug to be used is Taxotere, with a generic name of Docetaxel. This is given at 1/3 of the dose which would be given for its chemotherapeutic effect.
Side effects include anemia, low white count,fluid retention, peripheral neuropathy,nausea, diarrhea, mouth sores,hair loss, fatigue, weakness,and infections. Less common side effects include vomiting,muscle and joint pain, low platelets, and abnormal liver function.
Because I am receiving a relatively low dose, I do not expect the side effects to be severe.
Here are some additional observations.
Since I was diagnosed with Merkel Cell Carcinoma, I have not been sick. No colds or flu.
Since chemotherapy, my patches of eczema, whith I think are probably mild psoriasis have disappeared.
I have lost about 23 pounds, and my cholesterol numbers have improved.
I have great health coverage. So far, between Medicare and Blue Cross, I have paid almost nothing out of pocket for all the care I have received.
I am looking beyond August. Between August 15 and the end of 2011, we have planned a family cruise in December. Judy and I will take a west coast cruise at the end of September.
We will also visit Mike and Leanna, Sammie and Eli, probably in October, and go to Montreal to visit my mother, perhaps on the same trip to the East.
In between, while in Fresno, I hope to work part time. (To pay for all this).