Sunday, December 19, 2010

Thirteen. What Does it Mean?

Last Friday, at about five o'clock, I received a telephone call from Dr. Nghiem. He reported to me that the circulating Merkel cell count measured in the blood that I had drawn on December 7 revealed 13 Merkel cells in 10 mL of blood. After my surgery and before commencement of radiation treatment for my initial tumor, the circulating Merkel cell count was zero. So is this bad news? Obviously it is worse than if the count was zero. However I expected there to be some circulating Merkel cells as I have developed a distant lesion. Dr. Nghiem did not seem to be disappointed or unhappy. In fact, he seemed to be almost elated, as this will provide him with a measurement of the effectiveness of the unconventional treatment that I have had. He has made arrangements for me to have a follow-up Merkel cell count done. The blood will be drawn next Monday, a week from tomorrow. That will be 19 days after my single dose of radiation which was intended to unmask the antigens in the tumor and to allow my immune system to react to the tumor as foreign material. I think that will be the crucial count. If it has returned to zero, it will suggest that the treatment is working. If it has gone up, that will not be good news. However I will allow the treatment more time to work before I do anything else.

We have signed up and paid for another cruise. This one will go to Mexico from Los Angeles, leaving on January 5 and returning on January 16. As long as I continue to be asymptomatic, I plan to take that cruise. In some ways, I feel like Charlie Brown, trying to kick the football. The football is the cruise. We already missed our two week cruise to Hawaii, and I'm not even sure if we will get any money back. However Princess cruises said that we will at least receive credit for the money paid. We still had to pay for this cruise as they have not had time to assess whether my medical excuse is valid or represents a pre-existing condition.

In the meantime, it is life as usual. I will work two days next week, and two full days and two half days the week between Christmas and New Year's. If I remain asymptomatic, following the cruise, I plan to work three afternoons a week.

Sometime later in January, I'm looking forward to visits from my brother Jon, and his wife Sandy, and from my sister Ellie, with her daughter Cheryl and her grandson, David, who was not named after me.

If I said I'm not scared I'd be lying
But there's no use sitting home crying
My target's a circle
Surrounding the Merkel
I'll beat you or I'll die trying.

Wednesday, December 8, 2010

Hope for the Best, Plan for the Worst

Today  is a day of mixed feelings. This morning I went for my radiation treatment. A single radiation dose of six gray  (GY). This is about 1/10 of the standard dose given to try to kill every cancer cell in the area. I had a dose of a total of 60 gray to my face and neck. This dose was given to my mediastinal tumor. The objective here is to induce an immune response to the tumor and hopefully to kill all the tumor cells in my body. I

Dr. John gave me a reference article printed in the international Journal of Radiation Oncology by Ganem et al,  reporting on the mechanisms of low-dose radiation treatment for lymphoma. This article gives additional support to what we are attempting, and boosted my spirits.

This afternoon, we have an appointment with an estate planning attorney to update our wills, with a view to removing any complications which might result in passing our assets to our heirs. Needless to say, this is a downer.

On the bright side, a careful review of the insurance policy regarding cancellation of our cruise to Hawaii strongly suggests that we will either be repaid by  the insurance company, or receive a credit for future cruises from Princess Cruise lines. I don't think that I want to plan a two-week cruise, but while I am still feeling good, I would like to plan a one-week cruise to the Mexican Riviera.

So many people have responded to this blog, e-mailed me, and called me, I feel very gratified by the outpouring of good wishes, prayers, support, and offers of assistance that I have received during this journey.

I plan to add some of my favorite songs, poems and limericks that I've written over my lifetime to my blog from time to time. Here is the first.

There Is No "C" in Shuster

A "C" belongs in candle
In "cap" or "cape" or "coat"
If you put a "C" in Shuster,
You will really get my goat.

You can schove a "C " in schingle,
In schop or schip or sche
But there is no "C" in Shuster
As you can plainly see.

I rarely lose my temper
I'm a level-headed man
But if you put a "C" in Shuster
The schit will hit the fan.

BTW, my word processor thinks Shuster is misspelled.

Saturday, December 4, 2010

PET/CT Images Annotated. Musings

Axial CT see arrows
Coronal CT see arrows
PET Scan 
I apologize to those people who looked at the images from my previous post and had no idea what I was talking about. Thanks to Mark Alson who pointed out that not everybody can interpret these images. I am reposting images from my CT scan with arrows to show the tumor mass. I am also posting a single image from my pet scan showing the tumor mass. On that image, the mass lights up and is black in the picture while everything else is a relative gray or white.The pet scan image shows a very high level of metabolic activity indicating a very high likelihood of malignancy. On the other images, the tumor mass is visible and is new. While I have no proof by biopsy, the odds are overwhelming that this all represents a recurrence of my Merkel cell carcinoma.
After discussions with Dr. Flam, Dr. Nghiem,  Dr. John, and Dr. Parvathaneni  and  also with Dr Bhatia, the oncologist I visited at University of Washington, I have elected to proceed with the experimental treatment recommended. I think that there is little to lose, as it is highly likely that having chemotherapy and more aggressive radiation therapy will probably not be very effective. It is very likely that there are microscopic collections of tumor cells elsewhere in my body with the ability to rapidly grow as this mass did. While this would suggest that chemotherapy may be effective, Dr. Nghiem feels that the negative effect of chemotherapy on my immune system will allow those tumor cells not killed by chemotherapy to kill me.
So how do I feel being in this situation? It is highly likely that I will succumb to this disease. I may not have very much time left. Yet, I feel fine physically.
Mentally,it is very difficult. Like a song running through your head, thoughts of my condition, my treatment, and dealing with advancing illness and my ultimate demise are always in the forefront. I can't stop thinking about it. And yet, I am able to function quite well in day-to-day activities. I am continuing to work, play bridge,read, enjoy television shows, and particularly enjoy the love and support of my family.
Under the circumstances, we had a wonderful Thanksgiving weekend with the entire Shuster clan including Judy, my three sons, Gary, Brian and Michael, Gary's wife, Dana, Michael's wife, Leanna, and are five grandchildren, all together for the first time.
We were very concerned as to what we're going to tell our nine-year-old granddaughter, Eva. She was becoming very upset as she sensed that there was something wrong and nobody was telling her anything. She was concerned that there was something wrong with her, and was very relieved to learn the truth. Thanksgiving has not been a good time for her, as her maternal grandmother died on Thanksgiving day. Since learning the truth about me, she has been very loving and supportive.
So the question is, what should I do with my time that I have left. I do not plan to retreat into a world of gloom and self-pity. I have committed myself to spend some time working this month as long as I do not have substantial side effects from the radiation treatment. I think that I will continue to stick with my plan of working three afternoons per week beginning in January and additional time if needed at Kaiser. If I am feeling well, I would like to take a one-week cruise perhaps in the beginning of February. However I will only book last-minute, as I have canceled a planned two-week cruise to Hawaii, and will probably lose about $6000 which we have paid for this cruise. Additionally, I think I would like to go to Las Vegas for a few days.
I have had the goal for some time of becoming a gold life master of the American contract Bridge league. The requirement is to have 2500 master points. I need only about 90 more, and if I am feeling well enough, I will travel to some nearby tournaments to reach this goal.
I will also need to put my affairs in order. I always thought I had plenty of time to deal with issues such as drawing a will and making plans for my internment. I'll have to take care of these within the next month.
All this being said, in the words of the song from the Monty Python musical, Spamalot, I am not dead yet. I am by no means giving up the ghost to this disease. If this plan doesn't work, I will need a plan B. That may include more radiation treatment, chemotherapy, or enrollment in clinical trials.
My brother-in-law, Murray, has sent me links to clinical trials at the NIH. Thanks Murray.
 In addition, I plan to try some alternative treatments to enhance my immune system as this seems to be the most promising avenue to defeat the disease.
Looking back on my life, I was always the sort of person who deferred immediate gratification looking toward the future. I still remember feelings of jealousy is my friends were going skiing while I was busy studying for exams or working nights and weekends during my internship and residency. The question is was that worthwhile. I think it was. I feel that I have accomplished a lot during my life. I still hope to accomplish a lot more.
I have to express my gratitude for the love, support, and good spirits of my wife, Judy. She recently went through a long ordeal with her mother, taking her for radiation treatments and a providing for her needs during her battle with colon cancer, from diagnosis to final hospice care and her death. Now, she may have to go through the same ordeals with me.
I also acknowledge the outpouring of love and support from friends and colleagues during this difficult time. So many people are praying for me. To all of them, I offer my thanks.

Tuesday, November 30, 2010

Images from my CT. The Dilemma of Treatment

The axial image is above, the coronal below.The coronal image shows the mass almost in the midline above the diaphragm. The axial image shows the mass in front of the spine. The little black dot beside the mass is air in my esophagus.The mass is behind the heart and liver in the axial scan. A large radiation treatment poses a risk to my heart and spinal cord.
This is the only evidence of tumor. However the consensus is that there are likely othe microscopic foci of tumor and this is apparently something seen with MCC.
So what are the options?
Surgery is ruled out by everyone. It would be a horrendous operation for me, and not likely to offer enough chance of prolonged benefit to make it worthwhile.
Radiation treatment alone is a possibility, likely to obliterate this mass and I would likely avoid serious long term side effects.
Radiation preceded by chemotherapy. This is Dr Flam's suggestion. The chemo might shrink the tumor so the field if radiation could be decreased. Also, without radiation at the same tome, the effect of the chemo could be assessed. Chemo could possibly delay or prevent new metastases.
Radiation followed by chemotherapy. Hit it first with the best shot, and use chemo to try to clean up microscopic distant disease.
The problem with chemotherapy is that it reduces the immune response to the tumor. Even killing 99% of the tumor cells won't prevent recurrence if the immune system is crippled.
Dr Nghiem proposes a new treatment which has shown promise in animals, but I don't know if it has been tried in humans. Instead of 30 radiation treatments over 6 weeks, one triple shot given once. It would injure many cells rather than kill them. The hope is that these injured cells release antigens that the immune system will recognize as "not self" and create antibodies to kill the tumor cells all over the body.
There is little to lose with this approach. If it fails, the other possibilities above are still available, and in the meantime I may have several months of good quality of life. If it succeeds, I will be a pioneer patient.

Wednesday, November 24, 2010

Bad News on my PET/CT

Today, I went for a follow-up PET/CT. I have been feeling great, almost asymptomatic except for some dryness in my mouth and reduced taste sensation. I was optimistic that the scan would be normal and I could have a happy Thanksgiving and head off to my Hawaii cruise in a good frame of mind.
No such luck. The scans showed a mass in the posterior mediastinum measuring up to 4.5 cm, almost two inches in diameter. It is located just above the diaphragm behind the heart, next to the esophagus and spine, near the aorta. There was nothing there on my previous scan in June. The rest of this examination shows no evidence of significant abnormality elsewhere.
I put in a call for Dr Nghiem this afternoon, but it is Thanksgiving. I have an appointment to see him on Tuesday.
So what next? Surgery would be very difficult and dangerous,  painful with a long and arduous recovery and no real expectation of success. Chemo is an option. Radiation is another option. The latter seems more likely to be successful. I await word from the specialists.
I will post more in the next few days.

Wednesday, November 3, 2010

Six Months After

It is now about six months since I discovered my cancer. It appeared suddenly as a nodule in front of my left ear. After surgery and radiation, I am alive and feel well.
However there are residual symptoms. Taste is not completely restored. My mouth remains dry. My teeth have become sensitive. My left ear is numb. I have lost weight, about 15 pounds since May 2010. I was overweight so it is not all bad.
I have appointments for a follow-up PET/CT just before Thanksgiving and will visit Dr Nghiem in Seattle on November 30. Until then, without much to report, I will not be posting.
I have made some plans for the future. Assuming the best, that no new lesions show up, I will cut my work week to three afternoons per week and go to the gym for aerobic workouts 6 days per week. We will cruise to Hawaii for two weeks in December. We likely will cruise to Mexico in February and I will visit my mother early in March. We are trying to organize a family cruise in June, but I am not optimistic about that. The last time I tried that, I ended up paying for a cruise nobody took.
I thank the San Francisco Giants for distracting me during the worst times. I still can't believe they went all the way.
Here is another photo, taken today, showing no change.

I see today that there are three new victims of Merkel Cell Carcinoma added to the Google support group. I wish you all the best. My advise is to be a strong advocate for your own care. Find a physician who deals with this disease all the time. Learn all you can about the disease, and remember that the research and study is rapidly advancing and what may seem hopeless today, may be easily treated tomorrow.

Sunday, October 17, 2010

I am presented at Tumor board while in Philadelphia

We are back from Philadelphia. I finally met my grandson Eli. There is a slight culture clash here. It seems Eli is a Phillies fan and I root for the Giants.

Below is a photo of Eli, Sammie Mike and Leanna.

Here is a link to photos from Philadelphia.

I was presented at Tumor board at St Agnes Medical Center in Fresno. I learned of this when my oncologist, Marshall Flam called me and asked if I wanted to attend. Of course, being out of town, I could not.
Dan Stobbe also called and offered to take notes. Here are extracts from those notes.

Not much new info from tumor board.  Main point I learned was from pathologist, that these tumors are C-KIT positive on staining; that raised question of whether any possible relapse might be treated effectively with Gleevec.  Nobody seemed to know of any literature re: that, might be good question to ask your doc at U. Wash. (I will ask. I see Dr Nghiem on Nov 30)
Concensus was that local treatment with RT (radiation) was the way to go.  Surgical resection alone higher relapse rate.
Unknown if spontaneous regression of primary (suggested by multiple negative skin biopsies) is a positive prognostic factor or neutral.  Another good question for U. Wash MD. (I asked Dr Nghiem this question and he had no useful information on this subject.)
All agreed that follow up/surveillance with phys exam and PET would be wise. (My follow-up PET/CT is to be done just before Thanksgiving)
All wondered/were curious if U. Wash will be drawing repeat circulating Merkel cell studies as surveillance. (I hope so)
Back home, Gary met us at the airport with Sara. She gave me such a loving greeting. She is a real sweetheart.
Go Giants! (posted while they are losing game 2)

Sunday, October 10, 2010

My Visit to Montreal

This has been a very enjoyable visit. My mother is in good spirits. She also seems to be in excellent health.

I got a chance to spend time with my two brothers. Jon lives in Florida and is a Professor of Biostatistics at the University of Florida. Robert is a retired teacher and lives in Montreal. Thank God for that as he has the responsibility to be the first line of defense for my mother. He brings her won ton soup every Saturday, carefully proportioned out to last the week. Is it a coincidence that when I was at my worst with side effects of radiation, I was living on War Won Ton soup?  I think the apple does not fall far from the tree.
That's Jon on my right and Robert on my left.
We played bridge yesterday recalling many family bridge games when my father was alive.
It was very close but after 16 hands, my mother was the winner.
We went for dinner at Ty Breiz, with my niece, Andrea and her husband Ben. Also joining us was Sandy, Jon's wife. The onion soup was almost as good as I remembered it. I guess my taste buds are making a comeback. The mouth is still dry.
Everyone commented about how great I look. Is it because I don't look like I am dying or is it because of the weight loss. I think the latter. I recall a song by Gilda Radner who later died of ovarian cancer.The song was called Goodbye Saccharin  and it lamented the recall of the sweetener because it caused cancer at huge doses in rats.
"Men prefer girls with cancer to girls with flabby thighs" (perhaps not a perfectly accurate quote).
I am off to Philadelphia tomorrow and will post again after that visit.

Saturday, October 2, 2010

Progress Report 5 Months After My Tumor is Discovered

There is not much new to talk about. I have lost more weight, down to 163 1/2 today. This is about 15 pounds since May. I still have little appetite and although my taste buds are returning, most foods have some taste, but not to my liking. Boost plus, chocolate tastes good. Most other foods are not intolerable but not good.
Here is my photo, 50 days following radiation.
 You can hardly tell which side was irradiated.
Here is my photo from the last week of treatment from my drivers license. Pardon the blurryness, as I used the camera on my laptop and it can't do close-ups.
I was a redneck.
We are on our way east on Wednesday. I go to Montreal to visit my mother and Judy goes to Philadelphia to visit our son, daughter-in-law and their two youngsters, including Eli, our first grandson.
I will join her in Philadelphia a week from Monday and we return the following Sunday.
My bridge results continue to be good, coming first in the last 4 club games played, with two different partners.
Go Giants. Can't you win ONE more game?
Here is a photo of me with Rocky, our Goldendoodle. He did not like sitting in the chair with me.
Next week, if technically possible, I will post from Montreal.

Wednesday, September 22, 2010

Five Weeks After

I completed radiation treatments 5 weeks and 1 day ago. Today I visited Dr Holmes, my Internist. My total cholesterol and blood sugar are down (good news), but my HDL is down 10 points and is way too low. This is because I have not gotten much exercise lately and have been getting niacin flushes due to having to take niacin without much food, as I have not much appetite.
I also had an appointment with Dr John, my radiation oncologist. My skin has healed, and the ulcer I saw on my tonsil has also healed. I feel like I am doing about as well as could be expected. My taste buds are slowly reviving. I invented a device to clean my tongue while in the shower last night. A toothbrush is too tall and makes me gag. Something flat and wide would work better. Before I tried to patent this, I found numerous devices already available, and have tried one and found it works better than a toothbrush.
Two weeks from today, I leave for Montreal and Philadelphia. I hope I can taste the Montreal bagels and the onion soup from Ty Breiz. The other day I did a test run on onion soup at Mimi's. It was not very tasty, but I still had seconds.
I have been spending a lot of time watching the Giants on TV, with the help of TIVO. I can thank them for helping me pass the time in the past two months. Go Giants. Still in first place as I write this. 
Here I am. My neck looks like I never had the radiation. I have lost weight and today I am wearing size 34 jeans, and they fit. I will try not to gain it all back.
I like to include a photo of somebody better looking than me. This is Bel, Gary and Dana's youngest daughter. As you can see, she loves to eat. 

Thursday, September 16, 2010

Not Much New

There is not much new to report this week. I have worked 3 full days so far and will work another half day today. I must admit I was tired last night.
Here is my latest  photo. It looks almost back to normal. my skin is so smooth, it seems like it isn't mine. No need to shave the left side. I have stopped using the aloe vera, and the ulcer behind my ear has healed. My throat is sore and I can still see an ulcer on my tonsil.
Slowly, but surely, my taste is returning. The most noticeable is that the constant bad taste some call metallic, is gone. There is a recommendation to use plastic utensils to minimize this but I thank that is not useful. I noticed no change between metal and plastic. Zinc may help. I have been taking 50 mg of zinc gluconate twice a day. Brushing the tongue may help, trying to get rid of the appearance of a coated tongue. I think the most helpful thing is patience, allowing the body to heal, without expectations of any miracles. I can now taste some sweetness and some saltyness. Last night I ate shrimp cocktail, and it wasn't bad. The cocktail sauce did burn my tongue, and it was the mild sauce.
All in all, I am doing better than I expected. Now, I have to hope for good news on follow ups.

Here is a photo of Eli and Sammie. I will get to visit with them (and their parents) on October 11.
This is what life is all about.

Wednesday, September 8, 2010

Wow! No Doctor Appointments this Week!

I debated whether to post at all this week as there is not much new to report. But I am elated not to have any medical appointments this week.
I feel good. (music) I thought that I would now. However I still have little taste sensation. My skin has improved, and the invisible area of breakdown behind my left ear must have improved as there is no blood on the pads I use to cleanse the area. My tongue is coated and I brush it several times a day.There ia an area of ulceration over my left tonsil visible and my throat is often sore. I wonder whether Dr John did me a favor when he included the area in the radiation field when Dr Parvathaneni in Seattle had not thought it necessary.
Most of the redness has disappeared. My beard has stopped growing on the left. My cheek feels like a baby's bottom. (Sorry for the cliche). 
Here is the commercial for which I receive no benefit. Boost Plus (chocolate), the nutritional supplement has been my main source of calories and nutrition during this adventure. I can taste slight sweetness. It is really good for swallowing pills as it is thicker than water. I take 2-3 per day and my weight has remained at about 166 pounds.
Plans for travel are firm and flights booked. Judy and I travel together to Philadelphia on October 6. I continue to Montreal. I return to Philadelphia on October 11, and we return to Fresno October 17.
I hope I can taste the onion soup at Ty Breiz. I will be in Montreal the same time as Jon and Sandy (my brother and sister-in-law).
I have scheduled a follow-up Pet/CT for November 24. I had a nightmare the other night that it revealed liver metastases and I had to postpone our December Hawaii cruise to take chemotherapy. Oh well I can't dwell on that possibility. It is just over 4 months since I discovered the tumor mass and so far, so good.
Bridge results remain encouraging, 1st with Jill Woods, and 3rd with Steve Sharpe.
I close for this week with a photo of Eva, our oldest grandchild and the author of the poem on friendship I include with my emails. She and her family will be here tonight for a Rosh Hashona dinner.

This was taken on the Alaska cruise, before I started radiation treatments but after the diagnosis of Merkel's 

Tuesday, August 31, 2010

Update Two weeks after Radiation

Very little is new. My skin is healing well. My taste buds show very early signs of improvement. I had a follow-up appointment with Dr Flam who recommended Zinc, 50 mg twice daily and brushing my tongue which is coated.
Dr Nghiem has suggested a follow-up imaging study which I will have at the end of November, and I am in the process of setting up a follow-up visit around December 1.
In the meantime, I will go to Montreal from about October 6-11, and then to Philadelphia Oct 11-17. Judy will go straight to Philadelphia October 6. At the end of October, we will meet friends from Montreal in Las Vegas.
We also have a Hawaii cruise from  December 8-22. I hope the imaging results do not put a damper on that.
My weight has fallen to 166 lbs from about 176 when I first found my tumor mass. This weight loss is not unwelcome.
Here are the most recent photos. I did get a haircut.
Below is a photo of our dog, Rocky and our granddaughters Eva and Sara

Friday, August 27, 2010

Taste Recovery

Here are some references to studies on the subject.

These articles suggest that much of the sense of taste is recovered in six months after the end of treatment. One article showed recovery in all subjects in six months. The consensus is that the loss of taste is not due to salivary gland dysfunction but due to damage to the taste buds. Some patients never recover their sense of taste completely

Tuesday, August 24, 2010

One Week After the End of Radiation Treatment

August 24, 2010

I had a brief appointment with Dr John this morning to check out my skin. As you can see from the photo, there is an area of depigmentation on my neck but my cheek looks fine. Not visible in  tne photo is some skin breakdown behind my ear which I continue to treat 3 times daily with dilute hydrogen peroxide followed with Silvadine cream. Dr John says it is improving. I am feeling good. My throat is still sore but improved. No change in my taste buds.

I asked if there are any studies on neck radiation patients giving statistics about the time: dose: location: relationship to taste recovery. I could not find anything but anecdotal information on the internet. You would think some grad student would follow a large group of patients through the recovery period with either tests of taste or subjective quizzes to be able to construct graphs of the timeline to taste recovery. As it is, Dr John suggests that with my dose and using Intensity Modulated Radiation, I should expect substantial recovery in the next two months. He also says I should have no problems traveling in October so I will begin to make plans to go to Philadelphia and Montreal in mid October.

Our house is on the market. We have had two open houses and three visits by realtors with prospective buyers. We are asking $200,000 less than when we put it on the market 3 years ago, but no hint of an offer yet.
I will continue working 3 half days in August and then go to about 2 1/2 days per week in September.

Bert and I scored 212 on a 156 average to win Monday’s bridge game. However our winning streak did end on Sunday, finally not finishing in the overalls.

I know that at one time Judy asked people not to call, as I was having a hard time reviewing all my history with friends and family, but I have adjusted well to my condition and my prognosis and am happy to speak to anyone who wishes to call.

I have found a back-up Doctor in case the kissing doctor is unavailable.
Here is Dr Sammie, my granddaughter in Philadelphia.

Tuesday, August 17, 2010

I Know What Michael Douglas Has Coming

Tuesday, August 17,2010

I am done with the radiation treatments!!!
I had my last treatment this morning. They gave me a certificate of completion like I had taken a Medical Education Course. Actually, I should get category 1 credit for all this as I learned so much.
I know what Michael Douglas has to look forward to, as he will have radiation for throat cancer. His will be worse than mine. I hope his trophy wife will be half as nice to him as Judy has been to me.
The printed information given to me says that after treatment ends, symptoms may still get worse for 7-10 days before there is any improvement. The electron beam treatments seem to be innocuous. The entire process takes only a few minutes. I lie on the same table with the same head holder, but no mask. They line up the machine with marks on my face which were drawn a week ago Monday by Dr John, and which have almost completely come off. They tape a stand-off pad to my cheek, generally running the tape onto my lips so I feel like a hostage. About 15 seconds of machine noise and I am done.
Dr John checked my skin yesterday, and there is an area behind my left earlobe which has broken down. I am to cleanse it with Hydrogen Peroxide diluted to 20% and then with water, and then cover the area with Silvadine cream, three times daily. This will take weeks to heal, but is relatively asymptomatic as my earlobe is still numb from my surgery. The skin in front of my neck and just above the left clavicle is worse than it was, and the Aloe Vera stings when I apply it. I am afraid it will begin to break down.

My other symptoms are unchanged and I won’t bore you with the details.
At the bridge club yesterday, Judy surprised me by arriving with a birthday cake for my 70th which is on Wednesday. It was a lemon cake, one of my favorites. Needless to say, I tried some but it was tasteless to me although everyone else really enjoyed it.
Playing with Bert who seems to have recovered nicely from his hospitalization, everyone must have felt it necessary to give me birthday gifts at the bridge table and we had a 72% game, one of the best in recent memory. For those who are unfamiliar with duplicate bridge, it means we had better results than others with the same cards 72% of the time on average. Usually, a score of around 62% will be a winner.
On Saturday, Judy’s birthday, she arranged her own party with Gary, Dana, Eva, Sara and Bel. Our sons presented us with a gift of two nights at the Martine Inn, a B&B in the Monterey area. We will likely go in late September. After cake and dessert, Eva announced that she had eaten a dozen strawberries. Not very smart to finish them all. Sara began to melt down, but I rescued Eva from parental anger and Sara from sisterly jealous anger by taking off to the store to buy more.
Last night, I took Judy to the salad bar, (Sweet Tomatoes), I ate without enjoyment, but it was the first time in a while that we ate out together, and that was good for both of us.
I plan to work three afternoons this week and likely will continue to work part time until I see some improvement in my taste buds, after which I want to visit Philadelphia to see Sammi and Eli, and Momtreal to see my mother, Seattle to see Dr Nghiem and perhaps some time in Vegas or a cruise or both.
On a final, and somewhat sad note, Eva was asked to submit some meaningful photos as part of her first homework assignment.
She submitted the photo below, taken when she was a baby, more than nine years ago.

In the top row are Judy, Eva and me
On the bottom row are Eva's maternal grandmother Mary, her great grandmother Esther (GG), Judy's mother, and my parents, Eva's great-grandparents, Isobel and Samuel Shuster. Of the four on the bottom row, only my mother survives.

Friday, August 13, 2010

Hooray. I passed!!!

I passed the written drivers test. The photo will be weird with half my face red. I will put it down to bad lighting. Actually, if you have an appointment, the CA DMV is very efficient. I was in and out within half an hour.
Only two more treatments to go.
Bert is much better, home from the hospital. We will play bridge this afternoon.
Mike and Leanna sent us birthday gifts which we opened while doing a Skype video chat. That was a great way to keep close when travel is impossible. My gift was two wooden pieces onto which Mike printed some old photos. Judy's gift was coasters hand painted by Sammi, age 2 1/2. Great and meaningful gifts.
Our house is on the market. What a pain in the you-know-what. On Wednesday we had to vacate the place as a couple with two boys checked it out for an hour. Then our realtor says they can't afford the asking price. How inconsiderate. We were only given an hour,s notice to clean up and get out.I am having great fun following the Giants. They are a good distraction.
We recorded the HBO special, The Pacific. I have been watching that. If you are one of those who feel that we should never have dropped the bomb on Hiroshima, watch that series. It will change your mind. War is horrific. You can't imagine the courage it took for the marines to go from island to island in the Pacific to battle the Japanese. If anything, the error was to go to islands like Guadalcanal and Iwo Jima, rather than wait until we could use the bomb.
I will report on my progress again next Tuesday after my last treatment.

Tuesday, August 10, 2010

What Do I Tell My Granddaughters?

Tuesday, August 10, 2010.

SARA, age 3, The Kissing Doctor

What do I tell my granddaughter?  She has been most interested in all of my injuries.  When I had a healing biopsy site in my right leg, she noticed it and ask me what it was.  I told her that it was a cut and it would get better.  Then she insisted on kissing it.  Similarly, a biopsy on my left cheek was cured.  We have named her Sara, the kissing doctor.  I don't know if she is any less effective than the other physicians that I have.  I have a mark on my chest, which I plan to remove after I photograph myself today.  This was a localizing  marker for the radiation treatments.  She asked me what that was not told her that it was like a tattoo that she sticks on her skin.
As you can see from my photographs, I have green marks on my cheek covered with tape outlining the location of the electron beam treatments.  In addition, my skin is quite red, and there is one area behind my ear which has broken down.  I don't know how I am going to explain that to her.
I also don't know what to tell my nine-year-old granddaughter.  She has already lost her grandmother on her mother's side to a combination of breast malignancy and lymphoma.  In addition, one of her favorite uncles was hit by a car and killed.  We have told her that I have a condition that needs treatment.  I don't know if I have to be more specific than that.

I have now completed the full five-week course of intensity modulated radiation treatment.  Dr. John took upon himself to treat my left tonsil, although Dr. P. had not recommended it.  I don't know whether to be grateful for this or unhappy with it.  It seems that this has been the reason that I've had so much discomfort in my throat on the left.  The PET scan showed some increased uptake in the left tonsil, but it was felt to be a normal variant.
I now have the following complaints:
1.  Sore throat on the left.
2.  Worse than a complete loss of taste sensation, everything tastes bad.
3.  Dry mouth.
4.  Itchy and somewhat painful skin in my left neck, redness and increase in pigmentation.
5.  There is some breakdown of the skin behind my left ear for which a silver sulfonamide cream has been prescribed.

On the plus side, my mental status is stable, I do not have significant hoarseness, and I have not suffered from the debilitating fatigue that other radiation oncology patients complain of.
I plan to work this afternoon, and Wednesday afternoon, but not on Thursday, the day on which I have to take the written test to renew my California drivers license.  I think I should not have trouble passing the test.  My bridge game still has not deteriorated.  Playing with a different partner as my usual partner is in the hospital with respiratory failure, we still manage to take first place in a 12 table game, where there was an overall winner.
I have to take this opportunity to wish Bert Rettner  a speedy recovery.  He is not only my bridge partner, but a very good friend.  Unfortunately, although he is a physician, he has been unable to kick the cigarette habit, and as a result, he now suffers from severe emphysema and bronchiectasis.
Last night, in the middle of the night, I was awoken by  a strange noise.  It turned out that our pool sweep had become detached from the hose, and water was spraying all over the place.  I had to go out in the middle of the night to turn off the pool pump and filter.  After that, I had great difficulty in sleeping.  When I finally fell asleep, I had a dream that I was using ultrasound to look for recurrent malignancy in my neck.  I took the opportunity to put the ultrasound transducer on my abdomen and found a huge mass in my liver.  I hope this is not predictive of the future.
Tomorrow, I begin the first of five electron beam treatments.  I anticipate that this will not have very much affect on any of my symptoms with the exception of skin symptoms, which should get significantly worse.  I am hoping that other symptoms will begin to improve over the next few weeks.
In spite of my nightmare last night, I remain very optimistic about my outcome.

Tuesday, August 3, 2010

Update after 20 of 30 radiation treatments

Tuesday, August 3, 2010.

Today, I have completed 20 of 25 of the intensity modulated radiation treatments.  This will be followed by five electron beam treatments.
Before I get into a discussion of my recent visits to the radiation oncologists, I would like to discuss some of the activities which went on this weekend.
Brian, my middle son, who lives in Vancouver, came to visit.  We had a very nice visit with him.  On Saturday, we went to visit with Gary and Dana, where we had another small party in honor of Bel's first birthday.  Dana's parents were there.  They visited from Valencia, California.  Eva and Sara were there, of course,  and Gary's first wife, Margaret Eva,s mother was also was there.  We had a nice time and again, cake was served.  Unfortunately, I could not enjoy the cake.
On Sunday, we did video chats, first with Mike and Leanna, Sammie and Eli.  Brian was also able to participate.  This was followed by a video chat with my mother in Montreal.  My sister Ellie was there visiting from Edmonton Alberta.  Her daughter Cheryl was there with her newborn baby, whose name is David.  He is not named after me.  This was my first chance to see him.  I have to say that the innovations in modern electronics are wonderful for families were separated by so much distance.  Here, we were able to share video and chat with people living in Philadelphia, Vancouver, MontrĂ©al, and Edmonton.  I can only imagine what my grandparents on my fathers side who left their families behind in Russia, and moved to the New World, would think.  How they would have loved to have been able to communicate like this!

I have sufferred from most of the expected symptoms of radiation treatment.  The one which I have managed to avoid is the fatigue described by many.
The most distressing of all the symptoms is the loss of sense of taste.  In fact, it is worse than merely the loss of sense of taste.  Everything tastes bad.  The way described it to my wife is for her to imagine that everything she ate tasted like cantaloupe.  She hates cantaloupe.
The next distressing symptom is a very dry mouth.  In spite of multiple rinses, drinking lots of water, the dryness continues.  This also seems to result in a sore throat, although my throat has markedly improved since the first week of radiation treatment.
A new symptom which I have developed is some kind of painful lesion in my nose on the right.  Dr. Lee, the radiation oncologist, who was filling in for Dr. John yesterday, thinks it might be a viral herpes simplex.  I have had occasional herpes simplex infections on my lip, and I have had a similar condition and my nose two or three times in the past 10 years.  I will try treating this with an antiviral ointment.
My back pain is resolved almost completely.
Last, but far from least, is the burning in my skin of my neck on the left.  I have been applying aloe vera lotion to this four or five times a day, but I anticipate this getting a lot worse.  This is particularly so as I will receive five electron beam treatments.  These treatments are designed to add radiation to the skin. I asked Dr. Lee what were the chances that my skin would break down and that I would require skin grafts.  He said that it was likely that my skin would break down, but that it was virtually certain to heal on its own.  However, because this is the original site of tumor, the intense radiation to the skin is required.

On Saturday, I had a long talk with a fellow sufferer of Merkel's carcinoma in Minnesota.  His name is Rich Kessler. He tells me that he is one of the founders of the group.  He still has a non-healing lesion on his leg in the skin as a result of his radiation treatment four years ago.  However I have to say that my discussion with him gave my spirits a big boost.  He has survived eight years with Merkel's.  Rich, this message is for you.  I read on one of the other posts on the Merkel site that you can send blood for testing to Dr. Nghiem's lab.

My bridge game still has not suffered.  Playing with Bert, in a game with 15 tables, we had the best score of all 30 pairs with 212 on a 156 average. 

Here are the pictures. You can see the left side of my face is red and pigmented. My beard on the left is barely growing. The left facial droop appears more pronounced to me.

 Unless there is some unexpected event, I will post in one week when I have completed the Intensity modulated treatments.

One additional note. My radiation badge at work is changed every month. Mine was changed today. How ironic! Here I am taking this huge dose of radiation and I wear a radiation badge at work monitoring me for trivial doses by comparison.
I have spent my entire career conscious of the hazards of radiation, and avoiding it to the best of my ability and now I willingly accept huge doses. 

Here is a link to information about circulating tumor cell science. It is slow to load and references breast cancer, but I assume it will also apply to Merkel's. My result was zero circulating tumor cells. 

Wednesday, July 28, 2010

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
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.

Sunday, July 25, 2010

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

Saturday, July 24, 2010

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.