Friday, September 30, 2011

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.

Monday, September 19, 2011

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.

Sunday, September 11, 2011

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.