My Battle with Merkel Cell Cancer

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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. Posted by docshu at 02:23PM (-07:00) Bel Turns One Sunday, July 25, 2010 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. Posted by docshu at 02:51PM (-07:00) Update at Halftime Wednesday, July 28, 2010 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 My Battle with Merkel Cell Cancer 23
24 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. Posted by docshu at 08:56AM (-07:00) Update after 20 of 30 radiation treatments Tuesday, August 03, 2010 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 My Battle with Merkel Cell Cancer
Page 1 and 2: My Battle with MCC My Battle with M
Page 4 and 5: Contents I Discover a Mass in my Fa
Page 6 and 7: A Brief break, Then 3-5 Months of C
Page 8 and 9: Esophageal Dilatation: My Experienc
Page 10 and 11: I Discover a Mass in my Face Friday
Page 12 and 13: I Have Surgery Saturday, July 24, 2
Page 14 and 15: Posted by docshu at 10:54AM (-07:00
Page 16 and 17: In the absence of a tumor mass to i
Page 18 and 19: Friday, July 2: I plan to work in t
Page 20 and 21: I plan to add photographs to this b
Page 22 and 23: deformity and a facial droop on his
Page 26 and 27: there. They visited from Valencia,
Page 28 and 29: SARA, age 3, The Kissing Doctor Wha
Page 30 and 31: Hooray. I passed!!! Friday, August
Page 32 and 33: survives. Posted by docshu at 08:49
Page 34 and 35: Below is a photo of our dog, Rocky
Page 36 and 37: Not Much New Thursday, September 16
Page 38 and 39: Posted by docshu at 05:09PM (-07:00
Page 40 and 41: That's Jon on my right and Robert o
Page 42 and 43: Nghiem in Seattle on November 30. U
Page 44 and 45: Posted by docshu at 07:20PM (-08:00
Page 46 and 47: ook last-minute, as I have canceled
Page 48 and 49: Sandy, and from my sister Ellie, wi
Page 50 and 51: out. I do not have a definite date
Page 52 and 53: old. We had a very nice visit with
Page 54 and 55: I continue to work, although my sch
Page 56 and 57: Surgery Wednesday 10:00 AM Monday,
Page 58 and 59: do very much. On the other hand, I
Page 60 and 61: circumference. What that all means
Page 62 and 63: Montreal and on my return, have a p
Page 64 and 65: Here is a photo of Alex and yours t
Page 66 and 67: The bad news is that the experiment
Page 68 and 69: This is the best photo I could find
Page 70 and 71: the symptom gets worse. The generic
Page 72 and 73: DNA present in ~80% MCC tumors MCPy
Page 74 and 75:
Rocky woke us up this morning with
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=Bingo!=we were the next ones seate
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My colon feels like It wants to blo
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In any event, Dr Flam says I should
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No More Chemo (for now) Tuesday, Ju
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The Plan is Finalized Tuesday, July
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Not a Good Day Today, + Real Estate
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was down. I had no appetite. No foo
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my lower esophagus. An experimental
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Here is the rant. My appointment wa
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peripheral neuropathy is unchanged.
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have stopped the zinc. I am also ha
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Axial CT Image Here, we see a large
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I'm Back! Tuesday, October 18, 2011
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My brother Jon Shuster arrived Thur
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sessions, and for the first time si
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the skull. When the catheter was in
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to a pediatrician, who said that th
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PM. I will post again when I get ho
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Posted by David Shuster at 09:56AM
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obesity and emaciation." One of the
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Last night, I had the most sleep I'
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done frequently since having the pr
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they did help, they didn't help eno
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I hope that my dad is well enough t
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WBC count 4.5-11.0 K/mcL Platelet 1
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It is such great news. There are do
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so he can sleep. 2:00 Dana takes Be
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Cicero says of the Sword of Damocle
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evealed Staph Aureus, but not the a
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Fresno Imaging Center Medical Group
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Obituary Saturday, April 21, 2012 T
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manner of other names, as my dad di
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Eva had asked that I tell him she l
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document the final part of that tra
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Subject: docdave back at hospital T
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We got word that the ER doctor want
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used it), some stuff for my mom, an
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your brain and body work. As the ox
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who seemed competent and caring. Th
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in a voice I'd never heard her use
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In facing death, dad decided to tru
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My Battle with Merkel Cell Cancer

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