Update at Halftime

Wednesday, July 27, 2010.

I am at the halfway point in my radiation treatments. My symptoms as previously listed  are about the same. My back pain is manageable and my throat pain is minimal. Constipation is gone. The most troubling symptom is complete loss of the sense of taste. Mike and Leanna have suggested I try Miracle Fruit. This is a fruit which contains a chemical which alters the taste of foods to make them taste sweet. It acts on the taste buds. I have ordered this from Amazon in pill form, and will report on its effect on me.

There were reports on CNN which looks encouraging. Here are the URL http://www.cnn.com/2009/HEALTH/03/25/miracle.berries.weightloss/index.html

http://www.miracleberrycafe.com/media_miracle_fruit_cnn_chemotherapy.html

The research is being done at Mount Sinai in Miami, and a Dr Mike Cusnir was interviewed about it on CNN. I decided to call to discuss this. I had to call three numbers, all of which were answered by a very helpful HUMAN, and not by a machine. I did not get to speak with the doctor but I did speak with Monika Brooks, a nurse involved with the research. She reports good results in many chemotherapy patients in restoring some sense of taste, but not all patients. They have limited experience with radiation treatment patients.

Thursday July 28,2010

Here are the photos from the halfway point.

I can see a definite left facial droop. Otherwise there is little evidence that I have received radiation.

My back has improved. My neck feels warm on the left. All food has no taste. There is a constant bad taste in my mouth. Others describe it as metallic. I have been advised to use plastic utensils. This doesn’t help.

Bel Turns One

Sunday, July 25,2010.

Friday was Bel's first birthday. We went to visit and have pizza and cake, She is on the verge of walking. We had a nice visit. here is a photo of her with cake face.

I have now completed 13 treatments. I can report the following symptoms.

Loss of taste. This perhaps is the most troubling. I can’t taste anything. I have no desire to eat as a result. I can taste no saltyness and no sweetness. I will have to force myself to eat to avoid a feeding tube.

Dry mouth. I keep using the mixture of salt and baling soda to wet my mouth, but it does little good. At least it does not taste as terrible as it did.

Sore throat. This has improved since last weekend, and it seems the medication has worked.

Itchy skin, with some sensation of burning in my left neck.

Constipation. This may be from the narcotic in the slurry given to me for treatment of sore throat. I stopped taking it yesterday.

I have developed a quite severe low back pain. This has occurred in the past, but it is one of the worst I have had. When it started, my first thought was “could this be due to bone metastasis?”

I don’t think so. I have taken NSAIDS today and I’ll see what develops.

My bridge game is back to normal. Bert and I came first of 9 tables on Friday.

Radiation Treatment Continues

Here I am after 5 radiation treatments. The spot on my cheek is the biopsy site. I have the report of “Inflamed Suborrheic Keratosis”. No Merkels. Of interest is that the report does not show the name of the reading pathologist.

I think I have a slight facial droop on the left as a result of my surgery.

Sunday, July 18, 2010.

This has not been a good weekend for me. I have begun to develop the symptoms of radiation treatment. Nothing unexpected has happened, with the exception that I think is happening sooner than I expected. I began to have a very sore throat, and some discomfort with swallowing. I have lost much of my sense of taste. This is the case after only 8 treatments, and have 22 treatments to go. I dread the next few weeks. As yet, have not taken any painkillers. Tomorrow I will discuss the situation with Dr. John. So far, I have noticed no skin changes.  My beard is still growing on the left side. There's no redness or skin discoloration. I've had no itching or other symptoms. I have noticed some hoarseness.

Reading of peoples experiences online, I fear now that when my symptoms become worse, I may require a gastrostomy. I also fear that my sense of taste will never return.

I hope that this will all be worthwhile. It would be terrible to go through all of this only to have the cancer return.

On a happy note, I got to spend a lot of time with Gary, Dana, Sara and Bel. Sara has been particularly delightful. She came over to me and kissed the location on my right leg which still shows some discoloration after a skin biopsy. We joked with her about her becoming the kissing doctor. In many ways, the kissing is better treatment than anything else.

I spoke to my mother today. She is doing well. Ellie (my sister) visited her and just left today.While she was there,she was able to do a video chat with Mike and Leanna and had an opportunity to see Sammi and Eli.

Tomorrow, the plan is that radiation treatment in the morning, and play bridge in the afternoon. I still plan to work in the afternoons next week.

Wednesday, July 21, 2010.

On Monday, I was examined by Dr. John. He thinks that I might have oral candidiasis (thrush). This is a yeast infection.  when he looked in my mouth, he saw some white patches in the area where I was uncomfortable. He has given me a prescription for oral Nystatin.In addition, he gives me a prescription for a mixture which requires compounding.  It includes sorbitol, lidocaine, hydrocodone, and acetaminophen.  in order to receive these, I had to go to a pharmacy which does compounding.

I go to the bridge club.  When I'm done, I have a message on my cell phone from the pharmacy is saying that.  They would  like my permission to proceed with preparing this for me, in case the insurance doesn't pay. I go to the pharmacy, and the insurance does not pay.  This is quite ridiculous, but it turns out that I have to obtain a retroactive formulary exception.  Dr. John's staff is very helpful and this was taken care of yesterday.

The medications are actually helpful, and my pain has diminished.  However I'm still very uncomfortable with throat pain, dry mouth, difficulty in swallowing, and loss of sensation of taste.

I have now completed 11 of 30 radiation treatments.  I am not looking forward to the next four weeks.  For now, I feel that I'm still able to work, and will continue to work three afternoons a week.  I will still play bridge on Monday afternoon and Friday afternoon.  Last Monday, I feel that my bridge game was not up to par.

First Week of Radiation Treatment, Eli is born.

Friday, July 9, 2010.

My third radiation treatment was this morning. Yesterday in the afternoon, I felt some nausea. Otherwise I feel good and have no signs of radiation in my neck. I arrived at the office on time but had to wait about a half hour before treatment began. I met two interesting men in the waiting room. One was being treated for a brain tumor with radiation and chemotherapy at the same time. He was optimistic because half way into his treatment the tumor was slightly smaller. He had a history of thirty years of survival after testicular cancer and lung metastases.

The second man was being treated in his left neck for skin cancer, I presume squamous cancer and had a very red neck with a white patch about three inches in diameter, which was a skin graft. He also had some neck deformity and a facial droop on his left side.

He must have had a radical neck dissection and probably facial nerve removal as he said the tumor infiltrated nerves.

Both of these men seemed to be in very good spirits considering their conditions.

It makes me feel things could be much worse for me.

Tuesday, June 13, 2010.

Yesterday, at about 2 AM, we received a phone call. Our first grandson was born by cesarean section in Philadelphia. He weighed 6 pounds, 7 ounces and was 19 inches in length. Unfortunately, he was positioned with the occiput posterior, sunny side up. After two hours of pushing, they decided to perform a cesarean section. Everyone is doing well. We were supposed to be traveling to Philadelphia both to greet the new baby and help out, but this will not be possible. Fortunately, Leanna's parents arrived in Philadelphia just before the baby was born.

It appears that radiation treatment has not yet affected my bridge playing. On Friday afternoon, Bert and I came first, on Sunday afternoon, we also came first and on Monday afternoon, we came first of 12 tables and had the best score of all 24 pairs. Of interest is that Judy and Carol came second of East-West pairs.

On Friday, Bert Rettner, my bridge partner and friend took me for an early lunch. He is a physician who is now retired. However he has a particular interest in alternative medicine. He gave me names of reference books one of which I took from the library. The book is called "Younger Next Year"by Chris Crowley and Dr. Harry Lodge.  It basically gives you hints on diet and exercise to maintain your youth. I don't know if I can follow the advice at this time, but it is about time that I began a program of exercise which is more vigorous than merely walking the dog once or twice a day.

On Monday, following my radiation treatment, they have what they call a stat session. This is the time when the radiation oncologist evaluates how I'm doing. So far, and had no symptoms. We had a brief meeting with the dietitian. I will have to apply Aloe Vera lotion to my face several times a day.

I asked Dr. John about tips for improving my immune system. He recommended meditation. I don't know if I can do that, but today, while I was having my radiation treatment, I attempted to concentrate all of my thoughts on appreciating my heartbeat.

I have begun an e-mail correspondence with a former associate of mine. His name is Andy Osborne. He is much younger than me, and a world-class cyclist. He developed the mass in his neck which was diagnosed as carcinoma of the tonsil. He also underwent radiation treatment and I think chemotherapy as well. He has been doing very well and has resumed cycling and won races after recovering. He has given me three pieces of advice.

Be aggressive! Don't think for a minute that you cannot beat this.

Accept help when people offer.

Keep a positive outlook.

He said that he researched everything he could find on this cancer on the Internet and came up with 30 ongoing experimental protocols. He told his doctor that he wanted to be involved with all of them. He found a protocol which offered a 15 to 20% survival advantage but was experimental. He paid for it himself as it was not covered by insurance. One year later, it became standard treatment.

I think, that without asking, I have been following Andy's advice.

Tonight, I am hosting my regular monthly poker group.

I Begin radiation Treatment

Thursday, July 8, 2010.
Yesterday was a very busy day. I had received a call to switch my first radiation treatment to one clock on July 7, 2010. I had planned to work the afternoon at Kaiser. I had a dentist appointment for a complete set of x-rays to rule out cavities prior to beginning radiation treatment.
I had noticed a skin lesion which look like a wart just at the edge of the inferior margin of my right orbit. It had turned red and was noticeably larger than it had been previously. This was very disconcerting as I was beginning treatment to the left side of my face and neck. The entire treatment plan would be incorrect if this turned out to be the primary Merkel cell carcinoma. I decided to start work early. I called my dermatologist. He was on vacation, but I set up appointment with his associate, Dr Simjee, who agreed to see me in the morning. I left Kaiser after working only about one hour. I was seen by the doctor who assured me that she was 99.9% certain that this was not Merkel cell carcinoma. She did remove the lesion superficially and sent it for her pathological examination.
I went from there to the dentist who reported that my x-rays did not show any evidence of cavities.
After lunch, Judy and I went to see Dr. John, to consult prior to beginning radiation treatment. The radiation plan is for five weeks of intensity modulated radiation to deliver a dose of approximately 51Sv which corresponds to 5100 rem or rads using the older units which I am more familiar with. This will be delivered over five weeks, and followed by one week of electron beam therapy to the specific area where the tumor was first discovered. Of interest is that the dose to my right sided salivary glands will be about 20% of the dose to the left. I presume this is because of scattered radiation. After five treatments, I should be able to judge the net effect of the radiation on my right salivary glands by the results of the treatments on the left salivary glands.
 On Monday, we will have a chance to speak to the dietitian. 
I have my first radiation treatment. Thy inclose me in a mesh mask which conforms to my face and keeps me from moving. There is only minor discomfort.
After the treatment, I returned to Kaiser and work another 2 1/2 hours.
After work, Dana, my daughter-in-law (Gary's wife)  comes for dinner with Sarah, age 3 and Bel, almost one, This is a wonderful distraction. I barbecue steaks, thinking that while my taste buds are still functioning, I might as well enjoy a good steak.
 Sarah has become something of a comedienne. She said that she will not participate in her day camp activities but was only going to stand around. She repeated that several times, and then with a big grin on her face she said "I was just kidding". She is learning to swim and Bel is also learning to swim. However allowing them to go in the pool is a big production. They have a wonderful time just using the wading pool. Just as were about to go inside, Rocky (our Goldendoodle) punctuates the evening by peeing in the pool. 
I sleep much better, having been reassured that the treatment plan is on track.


I go for my Thursday morning radiation treatment. It is very quick and easy. I keep thinking as the radiation beam is traversing my body "take that you Merkel cells, I'm going to kill you. I'm going to get rid of every last one of you. You are my enemy and I hate you" .

On Friday, July 2, I received notice that my drivers license is up for renewal. It will expire on my birthday, August 18, 2010. I'll have to take a written test. I checked with the DMV website, and the earliest possible appointment is August 12. This means that I would have to take the test after five weeks of radiation treatment and my drivers license photo will show my face probably bright red from the radiation. One of the three DMV offices in Fresno has been closed for about a month. I decide to see if I can take the test without an appointment. I drive to the DMV office in Clovis and get there about 830 in the morning. There were 75 to 100 people waiting in line outside the door. The parking lot was filled with cars and people searching for spots. Parking on the adjoining streets was also nonexistent, filled with additional vehicles along to people going to the DMV office. As I did not want to spend all day at the DMV, I decided to use my appointment. I asked Dr. John if I would be in mental condition to take the test and he said I would. If you have an appointment, you usually only have to wait a few minutes. I would hate to lose my drivers license. 
I asked Dr. John when I could travel. He suggests waiting three weeks after radiation treatment. I will make an appointment to go back to Seattle to see Dr. Nghiem at the end of September. Judy wants to plan a cruise.

This Merkel tumor has forced us to cancel a trip to Philadelphia to visit our son and daughter-in-law and their new baby who is expected to be born in about a week. He will be our first grandson. I would like to travel to Philadelphia perhaps in the beginning of October to meet and greet him. They plan to name him Eli. 
Our oldest granddaughter, Eva, has written the following while at camp.

I think she will be a wonderful writer someday.



"Friendship is the sprout of a new life.
 When you make a friend, you have a person who will be by your side, and love you no matter what.
 Your friend will always walk home with you.
 They will hug you when you cry.
 Without friends, there would be no peace.  The world would  not spin round.
We need friends.


Eva Shuster-Arechiga Age 9

Baseline Photos Before Radiation Treatment

I plan to add photographs to this blog. They will be taken using my isight camera on my Macbook Pro.They will allow tracking of changes during radiation treatment

Here are the first, the baseline prior to beginning radiation therapy.

Pre Radiation

Wednesday, June 30, 2010.

I have a dentist appointment at nine o'clock this morning. I'm nervous about this. If cavities are found, it is possible that I will need extractions prior to radiation treatment and in addition, it may change the treatment plan and delay the treatment. Fortunately, nothing is found. However I will have to return for additional x-rays of my mouth on July 7 at 11 AM.

At 11 AM, I have an appointment for follow-up with Dr. Flam. They do lab work which shows no abnormality. After about an hour and 20 minutes of waiting time, I finally get to see Dr. Flam. He has read the journal articles which I gave him. However he does not know very much about the virus associated with Merkel's. He gives me his e-mail address and later on in the day, I e-mail him some references. I have an appointment to see him again in about two months.

Gary has been doing some interesting research on the association of Merkel's and the polyamovirus. I will post his information later.

I am still feeling fine apart from some discomfort in the region of my incision, and some numbness in the region of my left ear. I'm in good spirits. I plan to work tomorrow all day, half the day Friday and then play bridge in the afternoon, and then work three afternoons a week during the early part of my radiation therapy unless I become too fatigued.

Monday. July 5 2010.

I have a piece of good news from Dr Nghiem. One of the blood tests done was a very sensitive assay for circulating Merkel cells. There were no such cells found in 7 cc of blood. They don't know what this means as there is little experience with this test long term but it is the best possible result. I am interpreting it to mean that my immune system is eliminating circulating merkel cells and this is a good prognostic indicator.