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.