My Battle with Merkel Cell Cancer

Dictated But Not Read

2012-02-20T22:22:00.000-08:00

My dad asked me to update his blog. He has been in the ICU for about the past 24 hours, and is about to spend his second night there. His voice, wit and personality have come through beautifully in his blog posts. I cannot emulate those qualities, but I hope to at least accurately convey the ideas he shared with me. If I get some of the ideas wrong, I hope he will soon correct them in a post of his own.

He first asked me to express his deep appreciation for the support he has received from all of you.

He then asked me to share his current status.

Since his last post, his energy had declined. He was given a week of chemo as planned, but then his cell counts became too low to continue. The new plan was to take a week off and then restart. During this time, he was in significant pain (seemingly from the stent, but there was some generalized pain). There were plans for him to have the stent removed on Tuesday and replaced (if necessary) by a smaller stent. The plans were worked out late in the week, but given the long weekend the surgery was scheduled for Tuesday. He was given a 72 hour Fentanyl patch for the pain. My mom changed the patch on Saturday, and a few hours into the second patch, he began to experience shallow, somewhat labored breathing and a drop in alertness. He also had a slight fever in the just under 100 degree range.

My daughter Eva was sleeping over with my mom and dad on Saturday night. As he has done frequently since having the problems leading to the stent, he was sleeping downstairs in a chair. During the early morning hours, after Eva was asleep, my mom heard my dad call for her. She came downstairs and found my dad on the floor with blood everywhere. My dad remembers clearly what happened, and told me today that he had tried to walk to the bathroom but fell. He tried to get up and then fell again, this time hitting his head on the door to the bathroom. While telling the story, he smiled and said "after the second time, I figured I should ask for help." The blood was from the cut on his head. My mom stayed downstairs for the rest of the night, staying awake to keep watch over him. Thankfully, Eva slept through this and only saw a somewhat cleaned up scene when she awoke.

Eva's mom Margaret is my ex-wife, but over the past few years she has become best friends with my current wife Dana and we have been blessed with a strong co-parenting relationship. My mom called me in the morning, before Eva awoke, and after briefly speaking with Dana, we called Margaret. There was a little difficulty reaching her (understandable, she is remarried and has a newborn baby and was probably enjoying the hour or two of sleep her newborn affords her). After a little delay, she got the message and quickly called. She got right in the car and picked up Eva. Eva was well aware that her papa had fallen and was experiencing a turn for the worse, and her mom spent most of the day comforting Eva and crying together with her (Margaret has known my dad for almost 20 years).

I was out of town with Dana and scheduled to come back late Monday. However, it was Sunday and I was going back and forth by phone with my mom as to whether to return early. I told her that the only priority was honoring her wishes and my dad's wishes, and doing what would make things easier for them. She said she did not want me to come back yet, but she would let me know if that changed. She was holding off on calling Dr. Flam because she did not want to wake him so early on a holiday Sunday. I strongly encouraged her to just wake him up (if you're reading this, Dr. Flam, thank you for taking the early call). She did wake him up, but he did not seem to mind. He said to hold off on going to the hospital and just monitor him for changes. I asked my mom to call me immediately when anything changed. I'm afraid I didn't give her quite that much courtesy, though, since I called her a few times just to check in (although to be fair, my cell coverage was spotty so I wanted to make sure she hadn't called and failed to get through).

Some time later that day (probably mid-afternoon, but it is kind of a blur) she called to say she was in the car going to the hospital with my dad and Herb Boro. Basically my dad's temperature had gone to just shy of 101 degrees, which I am told for patients in my dad's condition is a level indicating possible serious problems (as we learned later, probably sepsis). I asked whether I should drive home but my mom said I should hold off. She didn't think things were critical at that point and she said she without a diagnosis of an imminent medical problem, she didn't want me driving home with my wife and two younger daughters at night. I said OK.

Around dinner time, perhaps a bit later, my mom called saying that my dad was not going to just be admitted, but was going to be sent to either the cardiac ward or the ICU. His heart rate was ranging between 110 and 130 and his blood pressure was way up and down. He had also seen his fever rise to 103 degrees. At this point I was gripped with uncertainty and self-doubt. I could drive home right away, but if things progressed even linearly, he would be unconscious or worse by the time I got there (it was about a 4 hour drive). My mom hadn't slept on Saturday night for more than an hour or two, and was heading into a Sunday night without sleep. My mom said the best thing was for me to rest and return in the morning. I went with her request and decided to try to sleep and drive in very early on Monday morning. My thinking was that the best thing I could do was arrive ready to relieve my mom so she could sleep. If I drove home right away, my mom and I would both be going into Monday with no sleep, and if things continued to worsen, we might both start to have our function impaired by lack of sleep some time in Tuesday's early morning hours.

It was the worst feeling I've ever had going to sleep. I was going to sleep knowing that my dad might pass away before morning. I had two dreams that I can recall that night. In one of them, my dad called to say hi and I stopped him after a few sentences and said "dad, you're ok!". In the other dream, it was morning and my dad had stabilized. I woke up well before the alarm and was gripped by a need to know how my dad was. The phone hadn't gone off during the night, so my worst fears hadn't been realized. I hoped that my dad had stabilized enough that my mom was able to sleep for a few hours. I didn't want to wake her, so I painfully waited for an hour before calling her.

I know that the portion of the story I just told is entirely unlike the other blog entries -- it is told from my perspective, and focuses on the experience of trying to react when a loved one is hurting. It is one thing to say that you should expect to make hard choices, have ambiguous feelings about the choices you make, and force yourself to do what you think, on balance, is best for the well being of your loved ones even if it is hard for you. It is quite another to live the experience. I laid out my decisions, the reasons for them and the ambiguity because even if I got it wrong or others would have done it differently, I think it is important for people caring for people in my dad's situation know that they aren't alone in making decisions that reflect their best guess, based on limited facts, about the right thing to do. Had the worst come to pass while I slept, I would surely have felt guilt that I made the wrong decision. I was lucky, or (I hope) rationally reached the right decision in that I arrived sad but rested and I was able to provide the love and support that my parents both needed after a truly awful night. Caregivers, you are not alone in repeatedly rethinking the decision you made that you thought 60% likely to be the right one. Be guided by your love for others rather than your own needs and at least you can tell yourself "I honored the wishes of my loved ones, and took the path I thought was most likely to do right by them."

I jumped a bit ahead in my effort to keep contiguous the portion of the post about the decision to return sufficiently rested to help rather than return 8 hours earlier. So I'll rewind to Sunday evening. I had held it together really well, talking my mom through some of decisions she faced, trying to figure out the right thing to do, even packing up so I could leave without delay in the morning. Dana had been offering to hug me for hours but I just needed to talk with her, and we talked until I'm sure she was well past the point of exhaustion -- but she is an angel and never let on. I was talking to Dana when mid-sentence I said "I need that hug now", she held me in her arms, and I cried. I wish I was better at crying when I need to, because it really helped. Dana made it safe to cry and I did. I realize now how strange it was that my ex-wife was holding my daughter and crying together about my dad probably at the same time as my current wife was holding me and crying together about my dad. Strange, but in a positive way.

While I was driving home, I talked a couple of times with my mom. She told me of the harrowing night they had. Essentially, she was up with my dad all night. They finally got him settled in the ICU and transfused him with 2 units of whole blood, at which point he improved a bit (the platelets they gave him earlier in the process may have helped, but if they did help, they didn't help enough). They had him on IV antibiotics, and that also helped. She was exhausted, and neither parent had slept that night.

I learned something else during that drive that completely surprised me: People don't normally have a copy of their advance medical directive document available. The doctors had asked if there was an advance medical directive, and in the middle of the night my mom was only able to say "yes, at the lawyer's office". Indeed, my dad's was at his lawyer's office (along with mine). We had all made the mistake of not making sure our loved ones had copies of our advance medical directive available. I don't know why I didn't realize that illnesses don't always strike when law firms are open, and that even keeping a single copy in one person's file cabinet doesn't mean that the person who will need it can get it. Luckily, the will was done by the same firm where a terrific person, lawyer, and friend works (Ken Price). I emailed the three lawyers I knew well at that firm, and despite the pretty early hour got a prompt reply from Ken. Of course (as I should have known after doing that whole law school/bar exam thing), the complication was that my mom was the person named to make medical decisions, so only she could approve the release of the document. Ken had the document scanned to a PDF and emailed it to my mom. She forwarded it to me and I printed it when I got home. Lessons here? Give copies of your advance medical directive to anybody who might need it, and realize that even if you have terrific, responsive lawyers they might be ethically limited in their ability to rapidly get you a copy.

I got in the car, copy of the advance medical directive in hand, and drove to the hospital. My mom was home resting and eating a meal. When I got there, I walked in and held my dad's hand. It had only been 24 hours since that first call, but it felt like I had spent a month on the trek there. I didn't let go of his hand for what seemed like an hour (likely about a minute), and in that moment he was my daddy and I was his little boy. I wished with all my heart for my daddy to be better. I looked up, told him I love him, and took a seat next to him.

He had beard stubble, was thinner than when I last saw him, but his eyes were alive. Not just literally alive, but *** alive *** in the way that all humans recognize as the sign that somebody is really there, ready to engage with the world. His body was suffering, but he was still very much himself. I suspect I had been breathing for the minutes leading up to that realization, but I felt like like it was the first time I exhaled all day.

We spent hours talking or just sitting with each other. My mom arrived, and the three of us just talked and enjoyed each other. As you can guess from his blog entries, my dad doesn't keep that much secret. My dad wasn't able to drink easily, and his mouth was very dry. As a result, his voice was crackly and quiet. He turns to me and says "Gary, I've got something I want to say to you". My mom kind of looked up and asked him "is this something I should be here for". He said "no, just Gary". I thought, "this is like one of those moments in the movies where the patriarch leans over and in a weak but firm voice and shares something of great importance." My mom walked out and I leaned in to hear every word. My dad looked in my eyes and said "so here is what I want you to write on my blog...." He proceeded to lay out his thoughts. At first I thought that this was one of those funny moments in a really tense setting where you've misunderstood a fundamental thing. But then it dawned on me that this blog has been an amazing resource to those suffering with similar afflictions, to his family and friends who get to see his wit and learn new things about him with each entry, and to himself in a cathartic way. So it was in fact a moment of immense importance for us -- he had entrusted me with writing an entry in a document of true importance in his life. He shared what I wrote below, but (to again take things out of sequence), we did share some intimate thoughts outside of the blog before my mom returned.

So this blog entry is very much dictated but not read. I listened carefully to what he said, and this is my best shot at conveying it.

He told me that he was very depressed last night, feeling that there wasn't hope for him. But today he has a ray of hope. He said his brain function "is not that great right now", but he is more optimistic based on the fact that we don't yet know if the chemo worked, and it may well have worked. He then laid out two scenarios:

The optimistic scenario: The chemo worked. In a few days he finds out that it worked and the stent comes out, he goes home, he has a chance to beat this thing.

The pessimistic scenario: The chemo didn't work. In a few days he finds out that it did not work and there is not much hope.

He says that everything is based on whether the chemo worked. I then asked him whether there was a third scenario, a middle ground where the chemo didn't work, but he feels better for a time. He doesn't get more chemo, but with pain management he is able to go home and enjoy some quality time before he passes away. He agreed that the middle ground scenario was possible and agreed that I should add it to his blog entry.

As for his current status, his blood pressure is still relatively low (88/50 earlier, but when I left it was around 80/50). I believe his ability to concentrate was cycling with drops in blood pressure, but that might just have been coincidental (he hasn't slept a reasonable amount in couple of days so there are plenty of reasons he might have trouble concentrating). They gave him IV steroids just before I left to try to raise his blood pressure. The risk is a secondary fungal infection, but they said that his blood pressure was just too low and they could control the risk with anti-fungals.

They confirmed that he had sepsis. Blood drawn yesterday was cultured and showed gram positive cocci in clusters. They continue to give him antibiotics, although they're going to monitor his renal function since the antibiotics can create renal function issues.

It turns out that the ICU has a rule that between 7:00 (am and pm) and 8:30 (am and pm, respectively), no visitors can be present. This is to allow the staff to brief each other more effectively during the shift change. We were sent home at 7:00 pm, and my dad indicated that we should come back in the morning. I asked the nurse to call me if he thought that my being there overnight would improve the treatment outlook, and he promised he would. He hasn't called yet, and assuming I don't get a call I'll return to the hospital after the morning shift change.

My dad remains cognitively strong, and the observation he made about his "brain function" being "not that great now", I'm convinced that it is due to difficulty remaining fully awake. When he does focus in, he's sharp as ever. His hands shake when he reaches for things. He is not getting IV nutrition, but he is on a liquid diet and has no desire to eat it. They probably put him back on IV nutrition tomorrow. His temperature is more or less normal (perhaps slightly high, like 99.2 or so). The nurse was laying out the treatment plan for the next few days, which is a signal that at this point the nurse is thinking things are improving.

I hope that my dad is well enough to post for himself soon, but while we wait for that I will do my best to take his dictation.

I know I led off with this, but it is important enough to repeat: My dad is truly appreciative of all of the support.

He has his iPhone with him and is reading email at times when his concentration is good. He may not have time or the concentration to reply to emails, but rest assured that they are reaching him.

-- Gary Shuster

Another "The Short of It"

2012-02-12T23:20:00.000-08:00

Because I still am not up to writing "The Long Of It"
I have been home since last Wednesday when the Topotican was started, as a continuous drip. I am able to swallow with the stent, albeit not without pain. The pain has been controlled with Vicodin needing less and less, but still needing it at bedtime. I am sleeping better, but not well. At night and at other times as needed, Marinol was prescribed. It is basically synthetic marijuana, supposedly without the psychotropic effects but with the anti nausea properties. So far, it does make me drowsy and does reduce nausea.
Although I am able to eat, I have no desire to do so. I have to force myself to eat food, and I am still on the TPN. I have not had a bowel movement in about a week, but I do pass gas. Sometimes I burp up feculent gas.
Listening to the Grammies tonight, I notice that my hearing is again deteriorating. I am also noting more neuropathy in my feet.
I continue to have shortness of breath and coughing while trying to speak.
With that parade of complaints, I am still optimistic that this drug, the Topo will kill enough tumor to allow me a remission, where I can have some snippets of normal life.
I hope to have the energy to post again, likely Wednesday after I see Dr. Flam.
Goodbye Whitney.
We will always love you. YouTubeVideo

Too sick to post much

2012-02-06T10:13:00.000-08:00

I can't put coherent thoughts together to post. Today, I will see Dr Flam and decide whether to start Topotecan today or delay a few days. The stent is working but I have no desire to eat. Lots of pain, but getting better. Nausea. No desire to eat even though the food goes down. Still on IV nutrition.

The Short Of It

2012-02-02T10:51:00.000-08:00

Last night, I did have a fairly decent nights sleep, for me. At least I was able to sleep in bed, and not in a chair. The IV feeding ran during the night. However, today, the Boost Plus is not going down easily.
I had my visit with Dr. Flam yesterday afternoon. We had conversations with Dr. Nghiem and Dr. Lewis during this visit. Dr. Flam wants me to start chemotherapy again and made a compelling case for it. He wanted me to begin as soon as today and felt that that would open my esophagus so I could begin eating again. However it would take some time for this and I am in too much distress to wait for this. Dr. Nghiem suggested injecting the esophagus tumor with Beta Interferon endoscopically and then giving radiation to the area of 8 Gy. The second mass near the gastrohepatic ligament might also be treated in similar fashion. However, my esophagus has already had 56 Gy and this is getting close to the maximum. We decided to hold that approach for the time being. I did not want to have any more cisplatin as I want to preserve my hearing and my peripheral neuropathy has not improved and at times is quite uncomfortable.
The plan now is as follows.
Tomorrow, Dr. Lewis will insert a removable stent. Stent Review Article On Monday I will begin chemotherapy with a drug called Topotecan. Information about Topotecan
The drug will be administered by continuous infusion for 5 days, and repeated after 2 weeks off. I don't know how many cycles will be used, presumably this depends on the response.
The drug is available to be taken orally. Perhaps after the first cycle, if my swallowing function has improved, I will be able to do that. More on Topotecan
Nobody discussed the response rate with me, but it seems to be in the 25-40% range, with only rare complete remissions.

The Bad News Doesn't Stop

2012-01-31T18:17:00.000-08:00

This morning, while being prepped for my PET scan, I answered my cell phone. It was Dr. Flam. He had just received the pathology report on biopsies of my distal esophagus done by Dr. Lewis on Thursday. The biopsy material contains Merkel cell carcinoma.
Shortly after arriving home, Dr. Stobbe called me with the results of the scan. There is a large mass of tumor around my lower esophagus, up to 6 cm in length. There are also positive nodes in my upper abdomen.
I have an appointment with Dr. Flam tomorrow at 3:00 PM at which time he will recommend more chemotherapy. Dr. Lewis agrees with that, but I will await the opinion of Dr. Nghiem. I spoke with Dr. Blom, who works with Dr. Nghiem. He was in Washington but will be back in Seattle tonight. I will fax or email the path report, and images from my Barium Swallow tonight, and images from my PET and the report tomorrow.
I began home hyperalimentation today.
Last night, I had the most sleep I've had in a week. It was the peaceful sleep of the ignorant. I wonder if I will sleep that well tonight.
I am not in pain, and the nitroglycerine helps me drink fluids. I have had 2 bottles of Boost Plus today.
I am hoping there is an experimental protocol which will offer me potential benefit, because it seems that more chemo will buy me a period of misery without any guarantee of a period of normalcy to follow, and may preclude any effective experimental protocol.
It should all come together in the next few days.

Brief Update I am home

2012-01-30T18:43:00.000-08:00

Monday Evening.
I am home from the hospital finally.
I have a PET/CT scheduled for tomorrow morning.
With nitroglycerine to relieve esophageal spasm, I was able to have Boost+ tonight.
Continue hyperalimentation tomorrow.
Depending on the results of the PET/CT, perhaps a removable esophageal stent is in the offing.
It will take some time for me to chronicle the events of the week-end and to post images from my esophagram and hopefully from my PET/CT.
This all awaits a future post.

Saturday Afternoon At St. Agnes Medical Center

2012-01-28T16:06:00.000-08:00

Just a brief update. It has been frustrating, but I have been in my hospital room since 3:00 AM. I had a Barium study this morning and will post pictures when I get home. Hyperalimentation will start tonight. I will be seen by Dr. Flam Monday morning, I presume in the hospital and go home Monday to continue hyperalimentation at home.
Surprisingly, the Barium went down to my stomach passing around a huge glob of goo un my upper esophagus. The lower esophagus is very narrow and tortuous, but no evidence of malignancy there.
The last piece of the puzzle will be a scan, either PET/CT or CT to see if there is malignancy in the area. I am optimistic there is not. We will then need a strategy to deal with the lower esophagus.
Judy has been a Jewish Saint during all of this. Thanks to well-wishers.
More details to come, depending on the degree of insomnia tonight and my mental status.

I am Going to the Hospital Now

2012-01-27T18:06:00.001-08:00

Nothing is going down, not even saliva.
I expect to be admitted to the hospital.

Pseudo-Achalasia: A New Diagnosis

2012-01-27T11:40:00.000-08:00

Yesterday, after my repeat esophagoscopy, Dr Lewis came to the conclusion that I do not really have an esophageal stricture, but a form of achalasia. This is a condition where the esophagus does not contract and the sphincter at the distal end does not relax. In layman's terms, the esophagus does not propel food towards the stomach, and the muscle of the lower esophagus does not relax to allow the food to advance from the esophagus to the stomach. The result is accumulation of food and saliva in the esophagus that needs to go somewhere. When upright, it can eventually trickle into the stomach by gravity. When lying down, it can go back into the throat and even possibly get aspirated into the lungs.
My search of the internet does not reveal much about this condition acquired as a result of radiation.
Dr. Lewis will consult with a colleague at UCSF and get back to me on Monday.
Possible treatments are:
1. Drugs which relax smooth muscle. These may not be right for me as my blood pressure is already low and this might make it worse.
2. BOTOX! This can be injected through the endoscope and might paralyze the sphincter.
3. Some form of myotomy in which the sphincter is cut, probably also done endoscopically.
4. Major surgery to remove the involved segment of esophagus and pull the stomach into the chest or replace the segment with colon. This would be a last resort. However, it might be best if there is no Merkel Cell Carcinoma lurking in my body.
Last night, I did get some sleep, but today, the second bottle of Boost+ does not want to go down easily.
Most people, when depressed, complain they can't eat and can't sleep. I am becoming depressed because I can't eat and can't sleep.
It is amazing that this has all come on within less than a month.

Esophageal Dilatation #3 (or is it #2?) Tomorrow

2012-01-25T18:57:00.000-08:00

Yesterday was my appointment with Dr. Lewis. It turns out that my last endoscopy showed food wedged in the lower esophagus. I saw a picture. It looked like nothing I ever ate, but I guess the main component was egg. After that was removed, Dr. Cano felt it was too inflamed to dilate significantly.
Dr. Lewis is confident that my ability to eat can be restored with dilatations. He does have experience with removable stents if needed. It is still a struggle to get even liquids down, and I get little sleep because of fluid in the esophagus coming back to my mouth at night and making me cough. Last night, I slept in the bed and not in the recliner. It was a little better. The head of the bed was elevated by cushions under the mattress.
Tomorrow, I go for another dilatation. In the meanwhile, I have been living on Boost+, 4 bottles today, 360 calories per bottle.
Today, I saw Dr. Flam this morning. He is very optimistic. He feels that this is benign disease, and doesn't even want to do a follow-up PET/CT for another two months. However, he did suggest that I would benefit from hyperalimentation if I lose another 5 lbs.
I am told I look good. My hair has come back, although the baldness has also come back. I look slim as if I am getting lots of exercise. My response is "I am half way between obesity and emaciation." One of these days, I will get a haircut, something I often thought I would never do again.
I plan to work at Kaiser tomorrow morning, go for my procedure tomorrow afternoon, play bridge Friday afternoon and work Saturday morning.

Steps in the Right Direction

2012-01-23T20:32:00.000-08:00

While I slept very well Friday and Saturday nights, but not so well last night as phlegm was coming into my mouth all night. But it was not enough to have to spit it out. I continue to lose weight, down to 147.5 lbs. However I am getting down more nourishment. 3 bottles of Boost+, ice cream, mushroom soup after it was put in the blender and chocolate pudding so far today. I was able to down a 20 mg Prilosec pill. There has been some discomfort, but it is not unbearable. In spite of the lack of sleep, I played Bridge with Bert today and we had the second best score of 25 pairs. I then briefly visited my 2 younger granddaughters. On Sunday afternoon, I got to spend time with Eva.
I will see Dr. Lewis tomorrow morning at 10:30. I moved up my appointment with Dr. Flam to Wednesday morning. I am scheduled to work at Kaiser tomorrow morning, and will do 2 hours early and then return after my appointment for another 2 hours.
Good news. My son had a negative cystoscopy today. My son Brian just arrived today for his appointment tomorrow with Dr. Lewis.
I asked an Interventional Radiologist who used to be an associate of mine, Dr. Marty Rindahl who was too busy climbing Mt. Everest to put in my Mediport about esophageal stents but he has little recent experience with them. He defers that to the gastroenterologists.

Sunday Morning Coming Down. Two Days After Dilatation #2

2012-01-22T12:48:00.000-08:00

I have had two decent nights sleep, with mild back pain (likely esophageal in origin) and without much regurgitation. This morning, I could down a bottle of Boost+ in about 15 minutes. Yesterday, it took much longer. My weight is down to 147 lbs. I was at about 180 when I first discovered my tumor 20 months ago.
On the bright side, people are telling me I look good.
I have stopped taking the Hydrocodone-Homatropine cough syrup, without withdrawal symptoms. In fact, with no solid food going down, my colon has been surprisingly active. Although the 20 mg generic Prilosec tablet is tiny, I have not taken it yet today, fearing it is enough to block my esophagus. I am looking into finding the liquid form.
I think there is slow improvement, and I might be able to start eating food again, perhaps after more dilatations.
I will follow up with Dr. Lewis.
Taking a step back, I think I need to see Dr. Flam, to get his input. It is probably important to get a repeat CT scan to make sure I do not have a recurrent tumor around my esophagus or elsewhere. Will I need a PEG tube? (Percutaneous Gastrostomy) for feeding? Sometimes, radiation strictures require multiple dilatations, up to 6 before there is relief of symptoms. Sometimes there is no relief. The latest treatment is biodegradable stents. These have been tried in Europe with good success. There is a product on the market in Europe called the SX Ella BD Biodegradable stent, by UK Medical. I have emailed the company, but I don't think the stent is FDA approved. Another study is being done led by Dr. Alessandro Repici in Italy, a multi-country trial. I emailed Dr. Repici and he responded today. The stent is in clinical trials and will not be available in the USA for 2 years. These stents are placed across the stricture and hold it open for 6-10 weeks before degrading and being absorbed by the body. Most patients get long term relief, but many need restenting. There are few complications.
In the meanwhile, I hope to go to the Bridge Club tomorrow and to work Tuesday morning at Kaiser.
Go 49ers

Only a Little Improvement

2012-01-20T21:43:00.000-08:00

Repeat endoscopy and dilatation today by Dr. Cano has resulted in mild symptomatic improvement. I don't think he dilated any more than Dr. Lewis. He removed some food impacted in the distal esophagus, and the spasms have improved, but attempts to eat small amounts of chicken broth, chocolate pudding and Boost+ have resulted in only mild success. I have regurgitated some of these, but without as much pain as yesterday, and some seems to have gone down. I don't think he dilated as much as planned as he was concerned with inflammation in the esophagus. You can't appreciate how we take for granted the ability to eat, chew, swallow and digest food. I don't know if I will ever be able to do so. It is very depressing. If my Merkel cell cancer is "cured', the cure may be as bad as the disease.
I will see Dr. Lewis next week, and maybe he will have something else to offer. I have heard of esophageal stents being used but there is a very high rate of complications, and they are not recommended for benign strictures.
In the meantime, I will stay home, trying to distract myself. Sorry, KP Docs, I will not be up to working tomorrow.
GO 49ers!

I Need Help Today

2012-01-20T09:56:00.000-08:00

Last night at dinner, I tried to eat a fried egg, and got blocked up. I expected the blockage to ease off as it has in the past, but it is now 16 hours, and nothing goes down. I have to spit out my saliva. I am having constant pain. I have had no sleep. Dr. Lewis is off today, but Dr. Cano, his associate, will try to take care of me today at noon.
Poor Judy. Everyone has problems. One son will have sinus surgery soon. Another will have cystoscopy for occult hematuria. Another will come to Fresno Monday to have endoscopy Tuesday for what I think is gastric outlet obstruction. Her sister probably needs to have multiple teeth pulled and a second hip replacement. On top of all this, the dog has a severe limp and had great difficulty getting down the stairs this morning.

Another Esophageal Dilatation Scheduled

2012-01-18T14:41:00.000-08:00

Today, I had a follow-up appointment with Dr. Lewis. I am still having symptoms of my esophageal stricture. This morning, I ate some cereal for breakfast and 3 small pills, after which even coffee would not go down. Presumably the pills were enough to block the esophagus.I was uncomfortable all morning, with esophageal pain and some pain referred to my back. For lunch, I had a bowl of soup and a bottle of Boost Plus and that went down OK. Dr. Lewis told me he dilated with Bougies, which are tapered tubes, up to 56 French, which corresponds to almost 19 mm. The most he will go to is 60 French or 20 mm. He could tell that there was a fairly long segment, about 4-5 cm of narrowing, andI had some bleeding and pain from the dilatation. Fortunately, I don't have any memory of the pain.
So why do I still have symptoms? It could be largely spasm, which could be treated by Beta Blockers or Nitroglycerine. The latter would have a major side effect of headaches. His inclination is to dilate again, and this will be done Monday afternoon. Sorry, Bert, our bridge game for Monday will be cancelled.
In the meantime, it is going to be a mainly liquid diet, ingested very slowly for the next 5 days.
Apart from this, I have developed an upper respiratory infection, the first since I was diagnosed with Merkel Cell Carcinoma. This has not helped, but it seems to be improving.
Hopefully, this will all be taken care of before mid February, as I have two bridge tournaments planned, followed by a cruise to Hawaii.
Captain, O Captain, don't go too close to shore.
I love to hear (from a distance), the ocean's soothing roar.
Use the Tenders as Tenders, I love those Tender rides,
Don't use them as lifeboats, with the ship listing on its side.
But if the ship were to unfortunately go down,
Rather than die of Merkel's, I would choose to drown.

Esophageal Dilatation: My Experience

2012-01-16T10:01:00.000-08:00

On Friday, the 13th of January, my breakfast got stuck in my esophagus. Nothing would go down, and nothing would come back up. I had severe pain in my chest, and hypersecretions. My nose ran, my eyes watered, and my mouth filled with saliva. I was coughing and sneezing, and eventually, some food appeared in my mouth. After about 45 minutes, the symptoms abated. I had scheduled my esophagoscopy for 3:00 PM, but Dr. Lewis was able to get me in for 1:00 PM. By that time, the symptoms were gone.
I arrived at noon as requested. I was taken to a cubicle and changed into a gown. It was cold (or I was cold). They started an IV (2 tries). My veins were tiny because of the cold. I asked the nurse to use a heating pad on my hand to allow the veins to expand, but they had none available. I am left with hematomas at both sites, left hand and anticubital area.
Dr. Lewis arrived shortly after 1:00 PM and they took me to the room. We talked and then the sedation was given with me lying on my left side. After that, I remember nothing.
It was like Joan Rivers said about giving birth. "Put me out with the first pain and wake me up when the hairdresser comes".
Dr. Lewis was surprised that he didn't find it as narrow as he expected. He didn't see signs of tumor infiltrating my esophagus. I have not yet had a chance to discuss the findings in detail. I will have an appointment with him in 2 weeks and may need the procedure repeated. I guess they don't want to stretch the area too much at a time for fear of perforation. I am to take 2 teaspoons of Lidocaine Viscous before meals, 20 mg of Prilosec twice daily, and to eat meat only if cut into tiny pieces.
So, what is the result? That's hard to say. I still have some esophageal spasm with eating, but no repeat of the Friday episode. Epigastric pain has diminished. I have a sore throat, either from the procedure or I am getting a cold. I am eating mostly yogurt, pudding, soup and other predominantly soft foods with little solid food. I have lost 3 pounds since last week. I didn't get much sleep last night, but I feel somewhat better this morning.
The plan is to carry on with my usual activities for now.

Post Esophagoscopy Uppdate

2012-01-13T21:36:00.000-08:00

It was done. I am somewhat improved but still have epigastric pain. Dr. Lewis will see me in 2 weeks. In the meantime, meat (except for ground meat) is off the table. I did burp tonight, for the first time in weeks.
I have been able to down pudding and Boost Plus, which would have been impossible this morning.
I will post a full description of the experience in a few days.

Dilatation for Today, Almost an Emergency

2012-01-13T10:42:00.000-08:00

This morning, after taking my Hydrocodone-Homatropine cough syrup and 2 small pills, I tried a mouthful of well chewed Rice Krispies. It would not go down, In fact, for the next 45 minutes, nothing would go down, not even my own saliva and I was having severe pain. There were lots of oral secretions which I had to spit out, and with coughing, some of the cereal came back up. I could not even drink my coffee.
This is significant progression of symptoms. Yesterday, I was able to eat a whole bowl of cereal without much discomfort.
I attribute this to flow dynamics. The flow through a tube is related to the 4th power of the diameter. Reduce the diameter by 1/2, and the flow rate is reduced to 1/16.
The symptoms now have abated somewhat.
My appointment with Dr. Lewis is for 3:00 PM but he has thankfully moved me up to 1:00 PM.
I will post again when I get home.

Another Complication of Radiation Treatment

2012-01-11T19:39:00.000-08:00

As I reported in my previous post, I am having difficulty eating. I get spasms of pain which appear to come from my lower esophagus. The pain is worse later in the day, and is worse with eating dry solid foods. Liquids go down better, and in the morning, I can eat my Rice Krispies with raisins, banana and blueberries without these spasms. Pudding, ice cream and yogurt are OK. Today, I called Dr. Flam and asked to see him. He had come back from vacation earlier than I thought, and I was there at 4:00 PM. The office was surprisingly busy. I got my port flushed and had labs which are stable. I have not lost weight. A chest X-Ray showed improvement from the previous, and I was better able to take a deeper breath. I realized that in that respect, I am significantly improved. Dr. Flam is quite certain that this is not due to recurrence of Merkel Cell carcinoma but is a stricture of the esophagus due to radiation. He called my gastroenterologist, Dr. Robert Lewis to set up an appointment for an esopho-gastroscopy and dilatation of the stricture, but it was too late to reach him. I expect this to be scheduled tomorrow, and hopefully to be done by early next week. In the meanwhile, I am to have only liquids and "pureed food". "No bagels and lox" in the words of Dr. Flam.
Stricture of the esophagus is a relatively common complication of radiation treatment and usually responds well to balloon dilatation. The major complication of rupture of the esophagus is relatively rare, less than 1% for all strictures, but greater for radiation strictures. The procedure may have to be repeated more than once as the stricture has a tendency to recur.
I think it will be an out-patient procedure.
It is of interest that I am feeling otherwise quite well and am functioning at a good level.
I will report a follow-up when I have more information.

First Update for 2012. Google Ads Pay Out!

2012-01-03T16:10:00.000-08:00

I received a check from Google for ad revenue from my blog. $100.95 was sent to me as a result of people reading my blog and clicking on the ads Google places on the right side of the posts. As a result, I am matching the amount and sending $201.90 to the University of Washington care of Dr Nghiem to be used for research into Merkel cell carcinoma.
I was home alone for almost a week as Judy went to the Renaissance meeting in Charlotte mainly to take care of Eva, Sara and Bel. She left last Tuesday and came back yesterday. I worked 4 full days while she was gone, and managed to handle the work well, although I was tired by the end of the day. While at home, I watched a DVD of Season 3 of 24, all 24 episodes, and read a book of 850 pages, 11/22/63, a science fiction thriller by Stephen King.
I am feeling quite well, but there are some symptoms. Apart from the dry mouth, hearing loss and neuropathy, I have gradually been developing discomfort on swallowing, particularly dry foods. There have been episodes of heartburn. I thought this was due to a virus as I was in contact with my contagious grandchildren during our family cruise. However, I now think I am developing a radiation stricture of my esophagus. I will mention this to Dr. Flam when I see him on January 18. I think there is little to do now, unless it gets worse. If it is due to new tumor growth, the area has had a full dose of radiation and I doubt if any more chemotherapy will be effective. Right now, it is not a quality of life issue.
Treatment, if needed would likely be balloon dilation of the esophagus, which I am reluctant to undergo at this stage.
My shortness of breath and cough have improved but I continue to take a narcotic every morning for the cough. (Just a small dose, I am not addicted.)

Here is a story from my youth. It teaches about life and death.

The Mouse and the Minnow Trap.

When I was about 10 years old, I used to go to the country with my parents and my brothers. My parents would rent a cabin by the side of the lake and there were quite a few children of similar age to me we spent the summer there.

One day, we found a mouse in a minnow trap. We kept the minnow trap and a small locker when it was not in use. There was still some bread inside it, and when in the water, was very efficient at catching small fish. It was somewhat cylindrical in shape, with conical openings at either end. These openings allow the fish to swim in, but then they couldn't find the openings to get out. It worked very well on this little mouse which got caught inside.

We had a long discussion about what to do with this mouse. I think the consensus was that we would submerge the minnow trap in the lake until the mouse drowned and then dissect it. You have to realize that this time, we were young children who had no significant ideas about life and death, pain and torture. At that age, you thought you would live forever. Time subjectively seem to pass much lower. A week off from school was a very long time. All summer away from school was an eternity.

My mother saw this group of children in serious discussion, and decided to intervene. She asked what was going on and we told her. She made the decision. We had to let the mouse go. We argued, but my mother was the boss. So we opened the minnow trap, and the mouse scurried away. He didn't get very far, as the dog, who was watching this with some interest, pounced on the mouse, and within a heartbeat, the mouse was dead.

There is a lesson to be learned from this. Men may be cruel, but nature can be just as cruel.

We're Back!!!

2011-12-19T11:22:00.000-08:00

We're back from the cruise. I'm going to divide this post into 2 portions. The 1st will deal with my health status. The 2nd will deal with a description of the cruise and associated events.

Part 1. My health status.
A few days ago, I was thinking to myself that since I began radiation treatments, I have never felt better. My cough and shortness of breath have significantly improved. My exercise tolerance has improved. I even climbed 3 flights of stairs at one point during this cruise. But peripheral neuropathy has changed little, but I think that the extent of the neuropathy has decreased in that there is less loss of sensation in the mid-calf level than there was. Before the cruise, I complained of some pain which appeared to come from the area one of my right lower ribs. Of course, whenever there is unexplained pain, one immediately thinks that it may be metastatic disease. However I think that I must've pulled a muscle while coughing, as the pain has gone away.
At the end of the cruise, on Friday night, I began to have severe heartburn. This became substantially worse on Saturday and Saturday night. I have had some difficulty explaining this. It felt like heartburn in that it was a burning pain centered on the lower chest, just like heartburn that I used to have before I began taking Prilosec. However it did not seem to be related to acid reflux as I have been on full doses of Prilosec, and the pain seemed to be at its worst right after and during eating. On about 2 occasions, the pain was so severe that I was postulating that may have torn the mucosa of the esophagus. Of course, when this happens, one immediately becomes convinced that there is now metastatic disease or that the tumor in my lower esophagus has again begun to grow. However I am now theorizing that this was due to viral infection as I was exposed significantly during this cruise as I will describe below. In fact, I am feeling significantly better, and this pain has almost completely gone away.
In summary, I am back to thinking optimistically, that, knock on wood, I'm feeling about as well as I have ever since I began radiation treatments.

Part 2. The Family Cruise

The photo above was taken on the 2nd formal night of the family cruise. Standing from left to right, are Mike, our youngest son, Leanna, his wife, Brian, our middle son, Dana, Gary's wife, and Gary, our oldest son. Sitting are Judy and me. To my left is Eva, our oldest granddaughter, Age 10 1/2. The bottom row consists of Sara, Eli, Bel, and Sammie. Sara, 4 1/2 and Bel, 2 1/2 belong to Gary and Dana. Sammie 3 1/2 and Eli 1 1/2 belong to Mike and Leanna.

The cruise began with numerous fiascoes. Mike and his family together with Judy and I all stayed at the Holiday Inn in Long Beach. There was supposed to be a free shuttle going to the terminal from the hotel, and we could park the car for a week at no additional charge. It turned out that the shuttle only went to the Long Beach port and our cruise was taking off from San Pedro. we needed to get a shuttle to take us to the cruise terminal, and it was quite a job fitting all the luggage into that shuttle, (not free).

There was a virus going around, and Sara was sick, and we were not sure that we would be able to get onto the ship. They do have a health questionnaire, and they have the right to bar access to the cruise if they feel that a person may be a health risk to passengers. However everybody managed to meet on board ship and get underway.

The premise was that for the family cruise, everybody would be on their own, but we would all meet for dinner. In fact, most of the time, we were together. This was very nice, but did involve more babysitting for Judy than she had anticipated. The 1st two family dinners were terribly disorganized. The wait staff was particularly slow, and this exceeded the patience of the grandchildren. There were lots of requests for special orders for the small children, and this somewhat overburdened the waiter and his assistant. By the time we had the 3rd dinner, after I spoke to the maître d', the situation was fairly well resolved. However there were many instances where grandchildren had to be taken out of the dining room and food for the parents was sent to the room.

There is an excellent children's program on board the ship. However 2 of the grandchildren were too young to stay there without adult supervision. Much of the time, the adult supervisor was Judy.

In the middle of the cruise, Sammie ran a fever of up to 104. She did not seem nearly as sick as that number would indicate. However clearly, there was a virus involved.

In Cabo San Lucas, Brian took Eva ziplining, and that was a highlight for them. On the last night, there was another fiasco. Eva and Sarah disappeared and were nowhere to be found. There is nothing so terrifying as the disappearance of children. We had the whole ship's crew searching for them, and they turned up at a dance club, where they were having a great time dancing as everybody else was searching.

At the end of the cruise, we all went our separate ways. However everybody but Brian ended up meeting for lunch just south of Bakersfield on the way home. Mike and his family stayed over at our house as it would be too long a trip to drive all the way to San Jose where they were going to stay with her parents for a week. This is the time when Eli became ill. He spent the whole night crying and could not be soothed enough to get some sleep. On Sunday morning, they took him to a pediatrician, who said that this was a viral infection. We had suspected that it might be an ear infection.

By Sunday at noon, our house was finally quiet. The cruise was over. We were left with fond memories, and viral infections.

Hurray! I don't have a Doctor's Appointment for Today

2011-12-07T09:49:00.000-08:00

It's a Wednesday, and I don't have to see Dr. Flam today. In fact, I don't have to see him for another 6 weeks. I will need my port flushed 2 weeks from today.
I am feeling somewhat better. Although I am still short of breath, I can take a deeper breath without coughing. The cough syrup helps. It does contain a narcotic, so I try to take it only in the morning.
My neuropathy has changed a little. Occasionally, I do have some pain in my feet. This is new. However, there appears to be less numbness above the ankles than there was previously. My hands show little change. My mouth is still quite dry, and it makes many foods unappetizing. This includes bread, cake, and cookies. However my sense of taste has substantially improved, and is close to normal.
On Friday, we will drive to Los Angeles and stay over at the Holiday Inn in Long Beach. On Saturday, we will embark on our family cruise to the Mexican Riviera. (These days, the Mexican Riviera includes only Ensenada and Cabo San Lucas.) There are no other stops. Whether this is because Princess Cruises is trying to save money, or because of unrest in Mexico, is uncertain. This is a vacation we've been planning for some time. It is a real family cruise. It will include our 3 sons, 2 daughters-in-law, and 5 grandchildren. When we planned this, I was hoping I could go, but I was not very confident that I would be in good enough health to enjoy it. It seems to have worked out well.
We have now booked another cruise, this time, to Hawaii, at the end of February. I am very optimistic about this one.
I have been working about 3 mornings a week at Kaiser Permanente, and plan to work 4 full days at Sierra Imaging at the end of December.
In other news, the IRS has disallowed the deduction I took for the Ponzi scheme that I was a victim of. My file was sent to Atlanta, but the agent who reviewed my tax return did not have the entire tax return but only the numbers to review. They didn't bother to give him the supporting documentation. Of course, he disallowed what was classified as a miscellaneous deduction. The IRS then stalled the case until the deadline for me to go to Tax Court was so close, that the case would not be reviewed in time. I think that the agent who receive the case in Atlanta did not want to have anything to do with it, and so just delayed to force me to go to Tax Court. This is an annoying bump in the road, and I would be much more upset, I'm sure, if I did not have the experience of having to fight a malignant neoplasm. That helped put these minor annoyances into their proper perspectives.
I will conclude this post, and hopefully future posts, with an anecdote from the past.
One day I was doing a carotid angiogram. These examinations are done with the patient awake, although sedated. We were most interested in the region of the origin of the internal carotid artery in the neck, but had some interest in the branches at the base of the skull. When the catheter was in place, I was giving instructions to the technologist as to how to position the patient. The conversation went as follows.
Me: "It's important that we get the neck in this patient and not so important that we have the entire brain."
Technologist, after setting up the equipment, “Is this okay?”
Me: “No. I don't care if you cut off the top of the patient's head. Just make sure you get the neck on”.
Patient: “I care. Don't cut off the top of my head!”
The moral of this little story is: Be careful of what you say, because you don't know who may be listening.

Not Much New, So I Tell the Story of Sadie Cohen

2011-11-20T17:23:00.000-08:00

It has been a while since I posted to this blog. That is because there has not been much change. I did visit Dr. Flam on November 9. My labs were unchanged, and my chest X-ray showed little change. because of continuing cough and shortness of breath, he ordered a CT scan of my chest. That was done on Nov 10. I looked at the images but do not have them to post. I would describe the findings using a term I coined. "Mixed Change". That is, somewhat better in the right upper lung annd somewhat worse in the right lower lung and the same on the left. No change was seen in my posterior mediastinum, the site of the only known tumor, which I hope is totally inactive. No liver metastases are seen. I will get the full report when I see Dr. Flam on Wednesday. I still have shortness of breath and a cough, The cough responds well to Hydrocodone/homatropine cough syrop. It allows me to dictate reports with little interruptions for a coughing break. Drug Info
This is a narcotic with potential for addiction. Apparently the Homatropine is added to stop people from taking too much at a time. It also helps me sleep all night as the homatropine prevents bladder spasm. Constipation is a side effect but so far has not been too much of a problem. My other symptoms are stable. Dry mouth, arm and leg numbness and hearing loss have not changed and are not too debilitating.
I have been working half days at Kaiser and even worked a full day at Sierra Imaging.
I was taking Vitamin B Complex, tablets from CVS. On my CT scan, I could see the tablets intact in my colon. Needless to say, they could not be very effective in treating peripheral neuropathy.
We have an addition to the family, sort of. Our oldest granddaughter Eva has a baby (half) brother born yesterday to her mother and stepfather.

Since I have no more news, I will tell the story of a patient from my internship who I will call Sadie Cohen.
Sadie was an elderly Jewish diabetic being treated for an ulcer in her foot, with the hope of preventing an amputation. She had Alzheimer's disease and was in pain She would lie in bed constantly moaning oy-oy-oy-oy-oy as only an old Jewish lady could. It was my job to keep her IV running and she would be constantly pulling at it until she dislodged it. There were no ports or PICC lines back then. They were calling me at all times to restart the IV. When I would stick her with the needle, you would hear "oy-oy-oy-oy-GEVALT-GEVALT-GEVALT! Because of this, I invented the decoy IV, some tubing taped to the arm above the real IV. When she pulled this off, the nurse could replace it.
One day I was called to see her because she was in a coma. I checked the IV fluids and there was an error in pharmacy. Too much insulin had been added to the IV. I gave her an injection of Glucose, and a few seconds after I gave the injection, I heard "oy-oy-oy-oy-oy". I knew she was back to normal. (for her).

Some Random Observations About MCC and Me

2011-11-05T19:25:00.000-07:00

This is my 100th post.

Here is a graph showing survival of patients with Merkel Cell Carcinoma by stage at the time of diagnosis.

Relative survival for 2,856 Merkel cell carcinoma patients by stage according to the 2009 AJCC staging system. Percent relative survival was calculated for cases in the National Cancer Database using age- and sex-matched control data from the Centers for Disease Control and Prevention. Stages are as indicated in the figure except for Stage IIIA which could not be derived using this dataset. The curve marked “IIIA*” represents pathologically node positive patients, with the clinical node status unknown or negative. It is anticipated that true Stage IIIA patients (clinical node status negative) have better survival than the line marked with “IIIA*.” Total number of patients was 2,856, and individual substages were as follows: IA = 266, IB = 754, IIA = 124, IIB = 414, IIC = 84, IIIA* = 794, IIIB = 143, IV = 277. From AJCC Staging Manual 2009.

This refers to stage at the time of initial diagnosis. I was stage IIB at the time of diagnosis, but I would classify myself as Stage IV diagnosed on November 24, 2010, about 11 months ago. If I can survive another 13 months, I will fall into that 20% who survive long term. Those who survive 2 years almost all are long term survivors.
These patients who survive stage IV undoubtedly have had chemotherapy, so I submit my thesis that, in spite of what Dr. Nghiem says, chemotherapy can prolong survival in Merkel Cell carcinoma.

Al Davis, famed and notorious owner of the Oakland (and Los Angeles) Raiders died last week. I have seen his death certificate on the internet. He supposedly died of heart disease and he had a history of cardiomyopathy. He supposedly died of ventricular fibrillation. He also had Merkel Cell Carcinoma, and had undergone a procedure for dysphagia (difficulty swallowing) a few days before his death. I submit that the full story has not been told. I suspect he died of complications of Merkel Cell Carcinoma.

Bridge. The Fresno Sectional Bridge Tournament was held last week. I played in all 8 sessions, and for the first time since I came to Fresno in 1976, I won the Presidents Trophy for winning the most masterpoints. Thanks to my partners, Bert Rettner and Mark Stern.

So how am I doing? I feel pretty good these days, but my shortness of breath has not improved. The worst symptom of this is inability to speak very long without coughing. This bothers me most when working, as I spend all the time dictating reports into Dragon 10 Medical. The software does a good job of ignoring my coughing. I am using cough drops and taking cough syrup at night, and have few symptoms when not speaking.
My neuropathy has not changed.
I will see Dr. Flam next Tuesday and will discuss possible treatment with corticosteroids.

Latest Update

2011-10-26T15:02:00.000-07:00

Today was the day for my follow up visit with Dr. Flam.
My labs are stable. My shortness of breath is slightly worse, but I can walk at a good pace and climb stairs. (thank goodness for that as we live in a 2 story home). I am not short of breath at rest, and I can sleep lying flat. I have the unusual symptom of being unable to speak for very long without coughing. I can not take a deep breath without coughing. This slows me down at work when dictating radiology reports and limits my ability to carry on a conversation. The treatment advocated by Dr. Flam is a short course of steroids, beginning at a high dose and rapidly tapering over six days. because of the immunosupressive effect of corticosteroids, I will run this past Dr. Nghiem. In the meanwhile he wants me to take a cough suppressant containing codeine. As there is the Fresno Sectional Bridge Tournament this weekend, I will delay this until the Bridge tournament is over.
My neuropathy is unchanged, and when the supply of pills I obtained from a web site promising 90% success rate runs out, I will discontinue them. I would doubt the accuracy of the 90% number.
My weight is stable and my hair is growing back. It is almost long enough to brush.

Here I am, no longer hairless although certainly showing more baldness than when this ordeal began.

I promised to write about my visit to Montreal, so here it is,
My Mother is doing as well as can be expected given her age and loneliness after the death of my Father after 65 years of marriage. Although she has been a widow for about 5 years, who can blame her. Her appetite is not good, but the food at Place Kensington is not the best, so she doesn't eat very much.
Here is the question. At 62 lbs, and at the age of 94, Is there another human on this planet whose weight in pounds is less than 2/3 of her age in years? Somebody not effected by some sort of developmental dwarfism?
Bluma and Lenny Clayman were wonderful hosts for the first 3 days I was in Montreal. Lenny picked me up at the airport and hardly complained about the plane being late. He cooked dinners and drove me around. Truly, they are the best of friends.
My brother Jon Shuster arrived Thursday and we shared a room at the Residence Inn in Westmount. We had a chance to spend time together and catch up. He lives in Florida and We are in California so we don't get to visit very often.
My sister Ellie Shuster came with her daughter Cheryl Cruikshank and grandson David (not supposed to be named after me). He is about 14 months and very cute. He had been walking only 2 weeks but getting around very well.
My brother Robert is in Montreal and is the go to person for my mother. We got to spend time with him Saturday and Sunday.

We met Alex and her Mom and Dad Saturday for a family Chinese lunch. She is very cute. Her Mom Andrea and dad Ben Urovitch are doing a great job parenting her.

From L to R: Me,Cheryl,David,Andrea,Alex and Ben.
We got to spend time with Robert and his wife Gertie Sunday for brunch.
Afterwards, Mom, Jon, Robert and I sat down for a game of bridge. My mother held her own most of the time.
Friday evening was the McGill Reunion Dinner.It was at the Omni Hotel and one had to step over the protesters to get inside. This did not seem to make much difference as the place was jammed. I sat at a table with old classmates from the Honours Math Physics class. It was the 50th reunion.
Ralph Roskies, who organized the table was stuck first in Newark and then at immigration and didn't make it. Doug Beder was there. He and Ralph were instrumental in my career change from Physics to medicine. I knew I could never compete with them.
David Mayerovitch, Barry Frank and Lorne Mendel were also there.
On Saturday night, we had a mini reunion of members of the McGill 66 medical school class.
About 15 members were present. Hopefully I will be there for the 50th when many more classmates have promised to be there. Thanks to Peter Humphreys for organizing this. We had a delicious dinner at Le Caveau, near the Mcgill campus. It was raining very hard after dinner, and I thank Arnold Zidulka for the ride back to the hotel.
We had a Friday brunch at Place Kensington, for which I ordered food from Snowdon Delicatessen.
We had Montreal smoked meat, pickles, chopped liver, eggplant salad, cole slaw party sandwiches and potato knishes. Oh wait! Ellie left the knishes in the oven and they burned to a crisp. David ate half the party sandwiches (not me). Still, there was plenty to eat and some leftovers.
Many family members took the time to be there.

Peripheral Neuropathy: An Explanation

2011-10-18T15:55:00.000-07:00

I have symptoms of peripheral neuropathy, which I would like to discuss in detail.

This is a condition in which there is damage to peripheral nerves, both sensory and motor. The common causes are diabetes and chemotherapy but there are other causes. At its worst, patients can develop severe arthritis in the feet which is caused by repeated trauma, because the protective mechanism of pain sensation is not present. This is termed "Charcot Joints".

Symptoms include pain and numbness in the hands and feet. The distribution in the feet particularly and to a lesser extent in the hands is described as "Stocking numbness". This is numbness that goes from some point in the leg to the toes like a stocking or sock, rather than in the distribution of peripheral nerves and allow distinction from other causes such as a slipped disc or nerve injury or in the hands to distinguish from neck disc or carpal tunnel syndrome.

In my case. there is also dryness and clumsiness of the hands due to motor nerve involvement and more subtle sensory deficiencies such as loss of proprioception which allows your brain to know where your fingers are. I find simple tasks somewhat challenging, such as turning the pages of a newspaper or separating one coffee filter from a stack, or buttoning my shirt. It has also resulted in spilling a cup of coffee on my lap and shattering the glass coffee mug.

fortunately, I have had little pain but there is the occasional shooting pain in my feet.

Dr. Flam suggested Vitamin B Complex which I began taking. I searched the internet and found a company that claimed to have 90% success treating this condition with their fat soluble version of Vitamin B. I bought a so-called 3 month supply for $145. they suggested 4 capsules daily, but upping the dose if it did not work, so the final dose would be 12 capsules a day or $140 for one month supply. This has not been effective and as they offer a 3 month money back guarantee, I will try to get my money back, without much optimism. So, its back to the pharmacy for Vitamin B Complex. At least it is an inexpensive treatment which I don't think will work.

Oh well, better to live with peripheral neuropathy than die of Merkel Cell carcinoma.

Here is a link to a Mayo Clinic artticle about peripheral neuropathy.

Link to Mayo Clinic Article

I'm Back!

2011-10-18T15:35:00.000-07:00

I am back from Montreal. It was a wonderful visit. There is much to talk about and I will do it in a future post.
Here is a photo of my mother, Isobel who weighs only 62 pounds but seems to otherwise be in good health. I am on her far left, Jon on her right, and Ellie and Robert standing.

Radiation Pneumonitis, No Evidence of Cancer!!!!!

2011-10-07T14:53:00.000-07:00

Today I spoke with Dr. Nghiem. He told me that Merkel Cell Carcinoma looks like any other malignancy when it spreads to the lungs, round smooth nodules. It typically goes to the lungs only late in the disease when there is cancer which is widespread. He will look at the images on my last blog and have Dr, Parvathaneni look at them also and get back to me. I so much appreciate his responsiveness.
I called Dr. Flam this morning and he agreed to see me on an urgent basis. I had labs done and my counts are improving. HGB is up to 12.3, WBC up to 5500. We did a baseline chest X-Ray and I must say that it looked almost normal. It amazes me how much more we see on a CT scan of the chest than on a routine X-Ray. We reviewed my PET/CT images. He examined me and I went for a walk while measuring my O2 Sat. This is a simple measurement with a device clipped to the finger which measures the percentage of oxygen in the blood compared to the maximum. It should run in the high 90's. It was 95% at rest and on walking, went up to 97%. These results indicate good function.
Dr. Flam has come to the conclusion that this is radiation pneumonitis, and the predominant area of involvement is the area which was irradiated. There are other areas involved also which he says is not uncommon. It is more common when chemotherapy is given at the same time as I had. The treatment if symptoms require it is with steroids. We would like to avoid steroids because of the immunosupressive effect which is not desirable with MCC.
He is fine with me sticking with my plans to go to Montreal and I will bring pills for a course of steroids with me in case they are needed. He suggested I delay my flu shot until I get back but wants me to wear a mask on the airplanes.
I have to thank Dr. Flam for seeing me in the middle of an exceedingly busy day.
Bottom Line: No Evidence of Cancer. As good a result as I could hope for. Radiation Pneumonitis. A temporary inconvenience.
On to Montreal.

My PET/CT Results: Good News and News of Unknown Significance

2011-10-06T15:29:00.000-07:00

This will be a long post.
I have been complaining of increasing shortness of breath lately. The symptom is not disabling but is disturbing. I have been thinking I might have lung metastases, and because of this, I have pushed up the timing of imaging to have my scans done yesterday. Before I get into the findings, I would like to fully describe the symptoms. I have little tolerance for exercise, getting short of breath with rapid walking. When I take a deep breath, it seems to catch and make me want to cough, I have difficulty modulating my voice and sometimes have to stop speaking to cough. I am not short of breath at rest.

Coronal CT Image

On this coronal image, there is air space consolidation adjacent to the heart, more right than left. There is also some focal peripheral consolidation.
(Right in patient is on viewers left)
Consolidation means fluid or other tissue where lung should be)

Here we can see that there is consolidation on both sides.

Axial CT Image

Here, we see a large abnormal area of air space consolidation to the left of the heart and several additional abnormal areas of lung consolidation on both sides.

This image shows some similar areas in the left upper lung.
These areas are described in the PET report as showing uptake of the tracer (the indicator of abnormal activity) which probably indicate infectious or inflammatory origin. The areas adjacent to the heart are described as also taking up the tracer, most compatible with post radiation inflammatory change.
There is no uptake in the area of the original mediastinal tumor, reported as a "Positive response to interim therapy".
Both the PET and CT reports attribute all this to inflammation and not neoplasm. My experience with almost all forms of cancer is that metastases are smooth round nodules in the lung without inflammatory changes around them.
However, I am not yet jumping for joy.
I have called Dr. Flam to discuss this and expect to hear from him tomorrow. I have also tried to reach Dr. Nghiem to get his take on this. Nobody I have talked to has ever seen what metastatic Merkel Cell Carcinoma looks like in the lung. We also need to find an explanation for the findings assuming they are not MCC.
In the meanwhile, I expect to go to Montreal as planned on Monday and deal with this when I get back.
To sum up, at first look, this seems like good news, but after many disappointments, I retain a guarded optimism.
I will leave Monday for Montreal, where I will see my 94 year old mother, perhaps for the last time. She has lost weight and recently weighed as little as 63 lbs. While there, I will have a chance to visit with my sister Ellie, her daughter Cheryl and grandson David (not named after me) from Edmonton, my brother Jon, visiting from Gainesville Florida and my brother Robert, his daughter Andrea, her husband Ben, and granddaughter Alex.
In addition, it will be my 45th medical class reunion and my 50th undergraduate reunion at McGill.
These can not be missed.
It seems like only yesterday, and yet also like an eternity ago when, on a visit to Montreal, I put my hand on a spot right in front of my ear and fount a mass. It was only 17 months ago. I have been through two major surgeries, 3 episodes of radiation treatments, 2 courses of chemotherapy, a port insertion, innumerable blood draws, and about half a dozen sophisticated imaging studies. These are all further documented in my earlier blog posts.
I continue to fight!

Update From At Sea

2011-09-30T10:34:00.000-07:00

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.

Back From Philadelphia

2011-09-19T09:20:00.000-07:00

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.

Philadelphia on 9/11/11

2011-09-11T11:07:00.000-07:00

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.

Things are Looking Up, Lots of Travel Plans.

2011-08-31T17:17:00.000-07:00

Yesterday was another visit with Dr. Flam. I was his first patient and things ran like clockwork.
My labs were encouraging. WBC is still slightly low at 4200. Platelets are still slightly low at 101,000, but hemoglobin is up to 11.9 grams. I am feeling much better. My taste buds are recovering, but my mouth is still dry. The candida has almost disappeared. I have to brush by tongue 2-3x daily. It makes me gag. I still have hearing loss which I am afraid will be permanent but I have a follow-up ENT appointment. I have mild peripheral neuropathy, manifest by slight numbness, dry skin and clumsiness. I guess I should be grateful there is no associated pain. I hope it gets better, but I am not optimistic. Vitamin B complex does not seem to make a difference.
The good news is that I have made new travel plans.
Montreal, October 10-15. I will combine a visit to my mother, my brother and family and old friends, Bluma and Lenny, with Mcgill class reunions, 50 years from undergraduate, and 45 years from medical school. Judy will not be accompanying me on this trip.
Plans previously made include Philadelphia Sept. 9-15 and our coastal cruise September 24-Oct 1.
When I get back after Oct 15, the moment of truth will be upon me. That is a follow-up PET/CT.

Substantial Improvement Since my Last Post

2011-08-25T14:58:00.000-07:00

Last Tuesday, I had a brief visit with the nurse. My labs are still not great, but my Hemoglobin is up to 11gm from 9.9. My white count and platelets are slightly low. I have been off parenteral nutrition since last Saturday morning and have begun eating much better. I am still losing weight but I suspect much of that as retained fluid. My taste buds are improving daily. Last night I had a small steak and it tasted like, well, you know, steak!
The white coating on my tongue has improved, but not disappeared, so I renewed my prescription for the lozenges for another 10 days.
I definitely have more energy. I hope I am not going to overdo things, but I have decided to accompany Judy to Philadelphia on September 9 to visit Mike and Leanna and our grandchildren Sammi and Eli.
Pet/CT in about 2 months.
Visit to Dr Flam next Tuesday.
After we get back from our coastal cruise on Oct 1, I will plan a visit to Montreal to see my mother who continues to lose weight.

My 71st Birthday Photo

2011-08-18T17:29:00.000-07:00

This is what it is all about. Here is a photo of me with 3 of my granddaughters, Eva (age 10), Sara (age 4) and Bel (age 2).

Status After Final Radiation Treatment

2011-08-17T16:27:00.000-07:00

My last radiation treatment was Monday, Aug 15. Take me out of the oven. I'm all done. My esophagus is cooked. In fact it feels like it was burned.
Yesterday was my visit to Dr. Flam. See the rant below.
My labs were OK except for my Hemoglobin which was 9.8. I needed another shot of Procrit, which insurance wouldn't pay for as the appointment was 6 days and not 7 days after my last shot. No big deal. I had that done today.
I have gained 4-5 pounds since my last appointment and we agreed to stop the TPN, tapering it off with the last treatment on Friday night. Saturday morning, I get to remove the Huber needle myself and will have just skin covering my port.
I have had some burning in my esophagus and heartburn at night. This should resolve as my esophagus heals. Food still has no taste. I seem to have a form of anorexia nervosa.
My tongue was white and Dr. Flam diagnosed Candidiasis (Thrush). He put me on Mycelex, Generic.
It comes in "lozenges", which are actually white chalky pills to be sucked until they dissolve, three times daily. Surprisingly, they are not as obnoxious as they look. Perhaps getting rid of the candida will help restore my sense of taste.
I have no ankle or foot swelling. My blood sugars have been behaving, as I have been self-testing as required 3 times daily.
I have been drinking up to 3 bottles of Boost Plus daily and eating a small amount in addition.
I have noticed that my hands are always dry and there is slight numbness in my fingers. I have become clumsy, dropping things and with slight tremor with small motor tasks. (Including typing this). This seems to be a mild peripheral neuropathy as a result of the chemo. I think I have similar but less obvious neuropathy in my feet. Dr. Flam told me to take Vitamin B complex for this but I doubt this will make a difference, as I have been taking multivites all along and vitamins are added to the TPN. Nevertheless, it couldn't hurt.
Dr. Flam offered two possible plans for follow-up. CT in 1 month if I absolutely had to know if all this worked as soon as possible. PET/CT in 2 months as the PET would not be accurate because of residual inflammation in 1 month. I prefer to wait until after our cruise at the end of September so will have the PET/CT in mid October.
Meanwhile I see the nurse in 1 week and Dr. Flam in 2 weeks.
Sunday afternoon, we had the Fresno Shusters for birthday cake to celebrate Judy's birthday. That was a nice distraction.
Last night I went to our monthly poker game, It was great to get out even with the TPN running. I left early, ahead by 80 cents. Before I left, I had a small slice of Mary Callender Lemon pie. It tasted like they forgot to put the sugar in it.

Friday, I plan to return to the Bridge Club.

Here is the rant.
My appointment was for 10 AM. At 11, I was weighed. At 11:50, I was called back for the nurse to draw blood from my port and replace the Huber needle. I was not seen by Dr. Flam until 1:30, and did not get out of the office until close to 2:00 PM.
Late in the afternoon, Judy went to pick up the prescription, which was supposed to have been called in to the pharmacy. They didn't have it.
There were many patients grumbling in the waiting room, some very sick and waiting to have chemotherapy.
There has to be a better way. Even the Cheesecake Factory gives pagers to those waiting for a table.
In Dr. Flam's defense, his Physician's Assistant recently left and has not yet been replaced, and he was seeing about 100 patients that day. I pointed out to him that the waiting times were excessive, and he shrugged it off to being very busy. He gave instructions for me to be the first patient of the day when I see him in 2 weeks. This does not change the fact that the office could be organized to reduce waiting times for all.

Into The Home Stretch. Review. Details of TPN

2011-08-11T19:43:00.000-07:00

I have only two more radiation treatments to go. It will be all over on Monday.
To recap, I originally found a lump in my face on the left in front of my left ear. There was also a small nodule in my left parotid (salivary) gland. Surgery and imaging showed one or two involved lymph nodes in my neck on the left.
After the surgery, I had radiation treatment only to the area of involvement. At that time, I was advised that the chance of complete eradication of the local disease was 80%. However, there was a 50-50 chance that the disease would appear elsewhere. If fact, I was on the wrong side of those odds, and the disease reappeared as a mass adjacent to my lower esophagus. An experimental treatment of a low dose of radiation was attempted in the hopes of stimulating my immune system to destroy the mass.
A follow-up CT scan showed the mass only slightly smaller, but a new tumor mass appeared in the small bowel. This was removed by laparoscopic surgery.
We then proceeded to chemotherapy and after 3 cycles of Cisplatin and VP16, the tumor was barely identifiable. No other tumor site could be seen.
The residual tumor site was treated with radiation and chemotherapy used to enhance the radiation. This was Taxotere. After 3 doses of the Taxotere I was too sick to continue taking it and it was stopped.
The result of all this is that, to my knowledge, there is no residual tumor in my body at this time. That's my story and I'm sticking to it.
I am recovering from the Taxotere gradually. My WBC have risen to 2900 from 1900. My Hemoglobin has decreased to 9.9 gms, and I was given a shot of Procrit for that. In my last post, I talked about inability to eat. I have been on TPN (Total Parental Nutrition) which is basically intravenous feedings.
On the first night after 3 days of 2 liters of fluid replacement and TPN, I developed ankle swelling. This rapidly resolved with elevation of the feet. I was having severe pain and burning in the lower chest when eating or drinking. This has largely resolved. I have had episodes of diarrhea, which have not resolved. Food tastes terrible, as if I have anorexia nervosa. This is due to the chemo and should begin to resolve. I am drinking 2-3 bottles of Boost Plus daily adding 700-1050 calories per day. Yesterday, I had 2 eggs. Today, I ate macaroni.
I expect no more than 3 weeks total of TPN.
This TPN is no simple matter. It began with delivery of 2 large boxes of material for one week's supplies. This included 7 bags of the fluid which looks like pale skim milk and has an odor almost like breast milk. 7 vials each of vitamins and other additives also were included. These need to be refrigerated and removed 1-2 hours before use. I set an alarm on my iphone to remind me.
A small infusion pump about the size of a paperback novel provides the power.It runs on a 9 volt battery which needs replacement daily. A disposable device is to lock in place which is part of the tubing that goes from the bag to my Medport. The procedure is as follows. The vitamins are added to the bag. The tubing is locked into the pump. The pump will often complain that it is not locked correctly. The pump is then primed. The port is flushed, and then the tubing attached to the port. The infusion is then ready to start. Needless to say, many things can go wrong. One night, the infusion pump thought it was still pumping from the previous night's residual and delivered only about 30 cc instead of 1800 cc.
I finally have it figured out, but a person untrained in medical procedures will find it easy to go wrong.
I also need to check my glucose 4 times a day. The device for that needs little blood. It is almost painless, but the first night, after 2 tries and error messages, I deferred further testing to the next day. I think I am still doing something wrong or there is a flaw in the device as far as sterility is concerned.
More on this in my next post.
I learned about the "Donut Hole" Because I have reached the donut hole in my Medicare Part D insurance, I am paying the full cost of this TPN. In another post, I hope to discuss the complexities of the donut hole and the inability to get straight answers from providers, one of whom told me it would be $4 per day and then called back and said $100 plus daily not including supplies. Total about $1000 per week. I can afford to pay (in spite of the falling stock market), but it is a powerful incentive to get off the TPN as soon as possible.
What happens to those who don't have the money to pay?

I Am Put On IV Hyperalimentation

2011-08-03T23:11:00.000-07:00

I am writing this while receiving the third and last 2 liter IV fluid infusion over the past 3 days.
Since my last post, I have not felt up to writing down my thoughts and feelings. I will start with a litany of complaints.
Everything tastes terrible. It is very hard to force food into my body when everything tastes so bad.
My mouth is very dry. My tongue feels like sandpaper. It is white, with cracks in it. I don't think I have Candida, (Thrush).
I am having difficulty swallowing. I can get stuff past my throat but it does not go through my esophagus easily, and creates discomfort on the way down. I also have pretty much continuous heartburn.
I am having upper abdominal cramps. I had severe diarrhea earlier in the week. This has subsided.
As a result of these complaints, I have decided to stop the Taxotere, with the agreement of Dr. John who examined me on Monday. In addition to these complaints, it turns out my white count was down to 1900. The purpose of the Taxotere was to enhance the effect of the radiation treatments and I think they need no enhancement.
I continue to lose weight and am not ingesting adequate nutrition. I saw a dietitian yesterday morning and the choices or me are tube feedings, intravenous hyperalimentation, or to force enough food down by mouth. I opted for the latter, but failed. Tube feedings could be done through a naso-gastric tube or a percutaneous gastrostomy. I don't think I could take a nasogastric tube for very long so this narrows the choice to IV feedings or a percutaneous gastrostomy. This is a tube placed through the abdominal wall into the stomach. Bottom line: IV nutrition for me.
This will be set up this afternoon. Apparently Medicare does not cover all the cost, but I will only have to pay $35 per day.
I have only 8 more radiation treatments left and am off the taxotere, so I don't think this will go on for more than a month.
I am also back to another series of Leukine for my white count.

I am writing this after a meeting with the home infusion nurse. She has been very helpful in getting this all set up and will be back tomorrow to watch me set it all up for myself. As a trained physician, I think I can manage all this without great difficulty, but without such training, it would be a real challenge.
Supplies delivered this afternoon included multiple tubes and pre-filled syringes, vitamin doses to add to the fluids, plastic bags each containing 1900 cc of what looks like low-fat milk, a battery powered infusion pump, and supplies needed to test my blood sugar.
All went well except that I was concerned about a small amount of air in the infusion line. I removed it from a side port using the needle to add the vitamins to the infusion. All is set up and running. The infusions last 18 hours giving me only 6 hours free of the pump which is neatly housed in a back pack they provided.
The pump is not entirely silent and will take some getting used to, not unlike my dog snoring (he's much louder). I suspect it will be one reason I'll be sleeping alone tonight. The other is that I will have to shower during that 6 hour window.
I did manage to down 3 bottles of Boost Plus today so perhaps if I can continue that, I can shorten the infusions.
No IV pole, so I have rigged something up with a camera tripod. I'll ask for the pole tomorrow.
Thanks Karen for your patience and instructions in getting all this set up.
I am still hoping to get to Good Company Players to see Eva in the final performance of her drama classes. That will take place Friday afternoon about 1/2 hour after I remove the infusion during my 6 hour break.

Closing In On The Mid Point Of My Radiation Treatment

2011-07-27T19:46:00.000-07:00

I have to say that at the end of last weekend I was getting very discouraged. I was taking daily shots of Leukine because my WBC's were down to 3100. I had a reaction of chills, and probably fever once. I was having nausea and almost constant diarrhea. My weight was down. I had no appetite. No food tasted good to me. I understand the need for the radiation, but the symptoms are mostly related to the Taxotere, being given to enhance the effect of radiation, rather than for its chemotherapeutic effect.
Today, I had my 12th of 25 radiation treatments and a visit with Dr. Flam. I also had the third of what I expect to be five infusions of Taxotere. I am feeling substantially better. I attribute this to my bowels returning to some semblance of normalcy. My WBC is up to 4400, not a huge improvement but better. My hemoglobin dropped from 10.9 to 9.9. Because of that, I was given a shot of Procrit, (epoetin alpha), to stimulate the production of red blood cells. Platelets were down slightly from 129,000 to 104,000.
I was feeling so discouraged that I wanted to discuss discontinuing the Taxotere and just going with radiation,but now I feel I can stay the course.
Thanks to Patty at Dr. Flam's office, the issue about the coverage for Carofate has been resolved. Apparently the insurance will only cover one generic brand, and I paid $7 for 3 weeks supply. The pharmacy originally obtained the wrong brand, and I asked what it would be out of pocket. $500. What a messed up system!
Dr. Flam suggested last week when I complained about the logistics of getting everything done suggested I come in at 7:30 AM today. He said I would have my labs done, see him get the infusion started and get to Radiation Therapy by my 8:30 appointment. This would work better than having the radiation first, and then coming to get the labs started after 9:00 in the usual traffic jam it his office. The techs at XRT were skeptical that this could be done and they were right. It all ran together at 8:30 when I was about to leave for XRT and Dr. Flam was ready to see me. Nevertheless, it worked out better than last week.
Judy has been wonderful. This week, she has been transporting Eva, our 10 year old granddaughter to Good Company Players acting camp, for 9:00 AM and picking her up at noon. Today, she woke up to take me to treatment for 7:30, took the dog to the park, picked up Eva to take her to her camp. Later, she picked Eva up and picked me up afterwards, and we had Eva here for most of the afternoon.
Tomorrow, I will drive myself.
Go Giants! It looks like we will get Beltran from the Mets.
Now, if we don't need to use Barry Zito we should have a good shot at a repeat championship.

Not Feeling Well

2011-07-23T15:58:00.000-07:00

This has been a difficult week. I have been uncomfortable, probably due to the injections of Leukine. The constipation has disappeared and I am dealing with the opposite problem and with accompanying cramps. Last night I had shaking chills, and about 4:00 AM, the cramps woke me up and my nightshirt was drenched. My appetite and sense of taste are gone. I have to force myself to eat. I discussed the need for further chemo with Dr. John and he encouraged me to stay the course. I am not really convinced that the chemo is useful at this stage, but I plan to stick it out.
Today is my Granddaughter, Bel's second birthday party. I will make a brief appearance.
As to a replacement for Carofate, the generic that CVS found is $300, compared to $60. My insurance does not cover that brand and I can't blame them. They have another supplier which I think will be approved.
Thanks Patty at Dr. Flam's office for your help with this.

Not a Good Day Today, + Real Estate Discussion (off topic)

2011-07-20T17:51:00.000-07:00

Wednesdays are the day for radiation and chemotherapy. Radiation Oncology and Dr. Flam are in the same complex, owned by St Agnes Hospital. The Oncology group rents space and is an independent entity while Radiation Oncology is owned and run by St. Agnes. Surprisingly, perhaps, the Oncology practice is much less efficient from the patient's point of view.
After my radiation treatment, I arrive for my chemo just after 9:00 AM. the waiting room and the adjacent corridor are filled with patients. I sign in and find a rare empty chair. The folks in the waiting room can talk of nothing except to express their unhappiness about the long wait. It made me feel guilty, because when I worked at a place called "La Clinique Medicale Des Groupes" in Montreal, in an average morning, a total of 25 fluoroscopic examinations were scheduled, with the last usually completed at 1:00 PM, and the latest appointment was 8:30 AM.

At 10:45, they finally call me to the lab, where they weigh me and send me back to the waiting room, because my blood draw is to be from my port. The blood draw and port access was done about 11 AM. I finally get to see Dr. Flam around 11:15. I am told he has 90 patients on the schedule for today.
My lab results are discouraging. the Hemoglobin is stable at 10.9, but my white count has dropped to 3380. My platelet count is not bad at 129,000.
Because of this, I will need shots of Leukine. This is given subcutaneously, for 5 days, after oral Tylenol, 325 mg tabletsx2, and Claritin. Potential side effects are allergic or flu-like reactions, hence the Claritin. and musculoskeletal pain, hence the Tylenol.
There are two areas where the chemo is given. One has about 16 chairs and two rooms with a nursing station between them. It is very busy and noisy, without internet access, and without windows. The second, called "The Clinic" is bright, relatively quiet, and has wireless internet. I ask to go to the clinic, and this is agreed to. However, when I get there, I am sent back because I reported a "Reaction" to the Taxotere last week. The reaction I reported was slight flushing and warmth around my ears. I return to the nursing station just after 11:30, but they have no empty chairs to give me chemo. I am seated at a bench to await an empty chemo chair. By this time, I am uncomfortable, getting hungry, and needing to use the bathroom. I get up and inform the nurses to call me on my cell phone when they have a space for me and that I am going home. We finally agree that I can go home and return around 1 PM.
I go home and have some lunch, and fall asleep for a few minutes. Judy goes to the Pharmacy and gets the Tylenol and Claritin. She also learns that my insurance will not cover the refill on Carafate, and they want $50 for a small bottle which, taken as directed, will last 1 week.
I return for my chemo and injection. I end up home about 3:00 PM.
It is now after 5 PM. I am having some pain in my lower chest and back. I presume this is from the Leukine and not from my esophagus, but I will be very nervous if the pain gets worse. I am also feeling mild nausea. I may need to self-medicate for that.
I have said that when you go to see Dr. Flam, you must park your "Type A" personality at the door and go with the flow. Today, I could not do that. I complained to the nurse, and that's how I learned that he had 90 patients scheduled for today. I complained to Tom Hackett. an associate of Dr. Flam, who looked in on me today, and I complained to Dr. Flam. It was not all useless venting. I learned that they can see me at 7:30 AM, get my labs done, and start the chemo, and then get me to my Radiation treatment with the chemo running. If I wasn't so "Type A", I would never have learned about this.
Next Wednesday, I will be there at 7:30.
Why would Blue Cross deny payment for Carafate? Do they think it would be cheaper than treating me for esophageal perforation? I will try to contact them tomorrow to find the answer to this question.
I am wondering about the plan to have chemo with radiation to enhance the effect of radiation. Is it worth it? Is it going to be any different than if I had radiation alone? If Dr. Nghiem had not endorsed this plan, I think I would quit the chemo. I will talk about this with Dr. John tomorrow morning.

Real Estate Discussion (Off Topic)
We are hoping to move from our large 2 story home into a smaller house on one level with no pool. We have found 2 different homes which were suitable and made offers at what we thought were reasonable amounts. Surprisingly, other buyers came in at higher offers and we did not get the properties. There is an interesting trend in housing here. I called it a "Squeeze". Smaller homes are selling rapidly and values are going up. Larger homes are not selling and values are going down. For those trying to downsize, this is not a good trend. Perhaps the reason is the fear of rising interest rates, either from the stalemate on the government debt ceiling, of from the government printing money causing inflation.

Esophagus Radiation with Chemotherapy Enhancement

2011-07-14T11:17:00.000-07:00

This phase of my treatment has begun.
On Tuesday, I went for the first radiation treatment to the mediastinum. New markings covered with tape were placed on my chest. The actual treatments consisted of six short bursts of radiation, with the machine repositioned for each burst so the tumor is shot from many different angles. This is done to reduce the radiation dose to structures near the treatment site. These include my heart, lungs, spine and spinal cord, vagus nerve and liver.
My appointment was for 8:00 AM, but there is a new regulation from Medicare which requires the Radiation Oncologist to be on site during the treatment so it was delayed until after 8:30. The schedule has now been changed so treatments will be at 8:30.
Yesterday, I went for my radiation treatment followed by chemotherapy.
After the treatment, I went to Dr. Flam's office in the same complex, and the waiting room was as crowded as the Los Angeles Freeways will be this weekend. I had my blood drawn. The results are good. Platelets normal at 137,000, White count normal at 4,900, and hemoglobin low but stable at 10.9 g/l.
After a brief visit with Dr. Flam, my treatment began. Through the port, I was first given 32 mg of Zofran over 30 minutes to prevent nausea. then, over the next 2 hours, I received 57 mg of Taxotere. Because this was the first dose, they gave it slowly to make sure I did not have an adverse reaction. The only reaction was some flushing and a slight burning sensation around my ears. I did not get sick but was tired afterwards and was mildly nauseated.
I drove myself home, and rested in the afternoon.
Brian is visiting from Vancouver. Gary and Dana invited us for dinner and I was able to go and eat some BBQ chicken and a hot dog, with a small amount of strawberry pie for dessert, so the nausea was not a factor. I drove there and, being tired, drove myself home before Judy and Brian left.
Today was treatment #3 of 25. There was also a status check with Dr. John. There is nothing much to report about this, but I did ask him if I should show up on time for my 8:30 appointments, because if he was going to be late, so was I. He did admit to having a conference on Thursdays which do not end until 8:45, so I will not rush to be on time on Thursdays.
It looks like the main side effect to be aware of is esophagitis, with possible development of a stricture. (An area of narrowing from scar tissue which can obstruct the movement of food)
As a precaution against this, Dr. Flam wants me to take 20 mg. of Prilosec twice daily and Carafate Suspension, 1 tablespoon after meals and at bedtime. Somehow, my dead taste buds still think it tastes terrible.
Today, I am feeling well, mildly constipated, with no nausea.
I don't expect significant symptoms for the next 2-3 weeks.

The Plan is Finalized

2011-07-05T14:48:00.000-07:00

I quote from my brother Robert. "The reason people retire is so that they will have time to visit doctors."
Between now and August 15, I will have 25 visits for radiation, 5 visits for chemotherapy, 5 evaluations by Dr. Flam, 5 status checks with Dr. John and a visit to by internist, Dr. Holmes. I think I also have a dental check-up coming up.
Today, it was Dr. Flam. You can't escape his office without labs.
The bone marrow suppression from my prior chemo continues.
White count is down from 5900 to 3500, Hemoglobin is down to 10.9 from 11.2. Platelets are still normal but down from 182,000 t0 158,000.
My symptoms are unchanged.
The most troubling is still hearing loss, with a buzzing sound when there is speech, particularly from male voices, including my own. Female voices seem to sound tinny. I hear the sounds, but its like a foreign language, of which I know many words but miss enough to often lose comprehension. The buzzing sound is something I can't find reviewing the web for hearing disorders.
The dry mouth and loss of taste continue.
The plan is to have radiation treatment with chemosensitization. I was reluctant to have 5FU, and the first words from Dr. Flam were "I don't want to give you 5FU." The drug to be used is Taxotere, with a generic name of Docetaxel. This is given at 1/3 of the dose which would be given for its chemotherapeutic effect.
Side effects include anemia, low white count,fluid retention, peripheral neuropathy,nausea, diarrhea, mouth sores,hair loss, fatigue, weakness,and infections. Less common side effects include vomiting,muscle and joint pain, low platelets, and abnormal liver function.
Because I am receiving a relatively low dose, I do not expect the side effects to be severe.
Here are some additional observations.
Since I was diagnosed with Merkel Cell Carcinoma, I have not been sick. No colds or flu.
Since chemotherapy, my patches of eczema, whith I think are probably mild psoriasis have disappeared.
I have lost about 23 pounds, and my cholesterol numbers have improved.
I have great health coverage. So far, between Medicare and Blue Cross, I have paid almost nothing out of pocket for all the care I have received.
I am looking beyond August. Between August 15 and the end of 2011, we have planned a family cruise in December. Judy and I will take a west coast cruise at the end of September.
We will also visit Mike and Leanna, Sammie and Eli, probably in October, and go to Montreal to visit my mother, perhaps on the same trip to the East.
In between, while in Fresno, I hope to work part time. (To pay for all this).

Decision Made

2011-07-02T15:40:00.000-07:00

I have heard from Dr. Nghiem. He is encouraging about the plan to enhance the radiation treatment with chemotherapy.
Dr. Podolsky is also encouraging.
I have had my set-up appointment and the treatments will begin on July 12 and continue for 5 weeks.
I have an appointment with Dr. Flam on July 5 to coordinate the chemotherapy.
My skin is marked with black marker ink and the marks are covered with tape. In the first session, July 12, they will place small skin tattoos for accurate targeting of the radiation.
The most feared complications will be related to the esophagus. Esophagitis, perforation and stricture are the most common, but the chance of stricture is less than 20%. It occurs as a late complication as a result of scarring, and can be managed by balloon dilatation.
The set-up includes low resolution CT. I looked at the images which were done with some barium in the esophagus. The residual tumor can not be identified with certainty and I believe it has shrunk since my last CT.
In the meantime, my body has a chance to recover from the chemotherapy. I feel quite good. My taste buds seem to have slightly improved. My mouth remains too dry. No hair has fallen out, but no hair grows on my head.
I have arranged to work at Kaiser on Wednesday morning and hope to be able to work more, both during and after my treatments. I must say I am going somewhat stir-crazy at home.
We are in the process of planning a family cruise in December and I am confident I will be healthy and fit so we can all enjoy it.

Or Was That a Premature Celebration

2011-06-29T19:12:00.000-07:00

Dr. John, the Radiation Oncologist who will be giving me the treatment for my residual tumor next to the lower esophagus and perhaps extending into the esophagus wants me to have additional chemotherapy to enhance the effect of the radiation.
He proposes Taxotere and possibly also 5-FU. The Taxotere would be given once weekly over about 1 hour in a dose less than if it were to be used as a primary chemotherapeutic drug. The 5-FU would be given as a slow infusion over 3-5 days using a portable pump. These would be given at the same time as the Radiation.
I'm pretty bummed about this development.
I have reached out to Dr. N. and to my friend, Bill Podolsky, who is a Radiation Oncologist for additional opinions.
Planning is to be done Friday and treatment is tentatively set to begin July 11 and to last 5 weeks.
Meanwhile, we are at the Chukchansi Hotel and Casino near Oakhurst about 40 minutes from Fresno.
So far, I am down $80, but Judy is up $55.

No More Chemo (for now)

2011-06-28T14:57:00.000-07:00

Today, I had my appointment with Dr. Flam. Fortunately, I had the report of my CT scan with me, as the office claimed not to have received it. He read the report, and did not ask to look at the images, which I offered, as I had the CD with me. He said that the chemotherapy had accomplished its objectives, and it was time to clean up the residual tumor cells with radiation. Dr. John, the radiation oncologist was in the hall, and I brought him up to date on my case. I think he did not recognize hairless me at first, but I have an appointment for tomorrow at 9:30 AM for simulation and planning.
My labs are good. WBC is 5900, platelets are up to 182,000 and hemoglobin back up to 11.2.
My port was flushed and I have an appointment to see Dr. Flam in 1 month.
Additional discussion with Dr. Flam included the question of what might be available should the tumor come back. He said that he had additional chemotherapeutic regimens which might be effective.
I feel good. The side effects of hearing loss, bad speaker tinnitus and taste loss with dry mouth are still with me. I think I have largely avoided "chemo brain". I hope these side effects go away, although the hearing loss is irreversible.
I am delighted to avoid the expected additional chemotherapy, and I hope to be able to travel in another 6 or 7 weeks.
On the downside, I spoke with Dr. Nghiem yesterday. He was not particularly encouraging about the good response to chemotherapy. He suggested that this is the usual result, but there are most likely cancer cells in my body which would not show up on a circulating Merkel cell assay, and the remission induced by chemotherapy is unlikely to be a cure. He did say that should that be the case, there are experimental protocols for which I would be a good candidate. One using immunotherapy would be particularly promising for me.
In the meantime, I know of 3 cases of Merkel call carcinoma cancer-free after chemotherapy. Audi, Scott Hammond and an additional unnamed patient of Dr. Hackett who is a 10 year surviver.
If you know of others, please post the information.

Good News!

2011-06-23T17:08:00.000-07:00

My CT scan today shows marked improvement from the previous studies.

By comparison, here is the previous axial scan

Most of the soft tissue in the area on the scan today is the distal esophagus.
The coronal images are below.

Here is the previous for comparison.
This is about as much as I could hope for. I await my visit to Dr Flam next Tuesday at which time I expect him to stop all chemotherapy and we can plan some radiation treatment to the area.
The CT scan also shows no evidence of new disease.
I don't want to get my hopes up too high as I have been disappointed before, but I am very optimistic.
I also saw Richard Weinberg today about my hearing loss. He was very accommodating, squeezing me in between his regular appointments. They did a more complete audiogram on me and I have significant high frequency hearing loss. He says a hearing aid would not help at this time and feels that some additional hearing loss would be worth the price if I need additional Cisplatin.

My Scan Will Be Done Tomorrow

2011-06-22T20:37:00.000-07:00

My Scan Will Be Done Tomorrow
Bet your bottom dollar
That tomorrow
I'll be scanned.
Just thinking about tomorrow
It may be a day of sorrow,
Or a day that's grand.
It will be a day that's hot and sunny
This is the test for all the money.
Tomorrow, tomorrow, they'll scan me tomorrow
Tomorrow's the day I'll know.

With apologies to Annie

I had my appointment with Dr Flam today.
Labs are not great, but not terrible.
My platelets are 84,000 up from 80,000.
White count is normal at 6,900, down from 26,800 after Neulasta.
Hemoglobin is down to 10.5 from 11.5 last week.
Symptoms this week are mainly related to my hearing. The audiogram showed a mild high frequency hearing loss. This is manifest especially watching TV, where I can hear dialogue but have difficulty understanding it. This week, a new manifestation showed up. It feels like there is a low frequency tinny sound, accompanying speech like there is a defective speaker on a radio.
Dr Flam wants me to see an ENT specialist. I have called my friend Richard Weinberg who will try to see me tomorrow after my CT.

In any event, Dr Flam says I should not take any more Cisplatin and if more chemotherapy is needed, he will switch to Carboplatin, which causes less ototoxicity, but not none.

It seems like three possible scenarios depending on the CT scan.
1. Best case, the posterior mediastinal mass is gone and there is no new tumor.
The plan for this case is likely radiation treatment to the posterior mediastinum.
2. Most likely. The mass is smaller, or unchanged but there is no new tumor.
Continue chemo with Carboplatin.
3. The mass is bigger, or there is new disease.
Stop chemo. Look for an experimental protocol.

In other news, we had a very nice visit from my brother and sister-in-law from Florida, Jon and Sandy.
They took us out for dinner Monday night. The food was good, so I'm told. As good as could be expected, with loss of taste. On Tuesday, we had brunch with them and with Gary, Dana and the three granddaughters. Then Eva stayed over last night. She leaves for 2 weeks of camp on Sunday.

I hope to post again tomorrow with my results.

My Hair's Still There!

2011-06-15T11:18:00.000-07:00

My tongue is so dry
To my palate it's stuck
And the taste of food
Makes me want to upchuck
But my hair's still there.

I get so tired
I could sleep on nails.
My skin gets so dry
It's as if I had scales.
But my hair's still there.

For a week, I feel
Like I want to throw up
My colon feels like
It wants to blow up.
But my hair's still there.

I've become so clumsy
And I'm losing my hearing
I question the course
That I've been steering
But my hair's still there.

On the bright side, my doctors
Use every trick
And since I got Merkel's
I haven't been sick.
And my hair's still there.

I shaved it off,
But it didn't fall out.
Yet!
Three more rounds to go.
It will.
I bet.

Actually it is a fact that since I got MCC, I have not even had the sniffles (that weren't caused by allergy).

Yesterday, I visited Dr. Flam for follow-up.
Labs are good.
WBC up to 26,800 due to Neulasta.
Platelets down 166,000 to 80,000. This is still not too bad.
Hgb 11.5 up from 11.0
I have a symptom which has developed slowly and I don't even know if it is related to chemotherapy and that is hearing loss. I can hear sounds, but often cannot make out the words. This is especially so when watching TV. I have been resorting to closed captioning. I had an audiogram yesterday which showed mild hearing loss. We will see if it progresses.
Otherwise I am doing well.
I have a CT scan scheduled 1 week from tomorrow. That will be the moment of truth.

My Granddaughter Eva has donated her hair to Locks of Life, which provides wigs for cancer patients. She has done this in my honor and also in memory of her other grandmother Mary Arechiga, who passed away from the combination of breast cancer and lymphoma.

Here are the photos.

I am so proud!

Round 3, day 1

2011-06-07T17:19:00.000-07:00

We have a plan. It is obviously not set in stone.
Six rounds of chemotherapy. PET/CT before the 4th round. Assuming I have improved, that is the posterior mediastinal mass is smaller and there are no new lesions, Imaging again after the 6th round. Then additional radiation to the site of the posterior mediastinal mass. After chemo and before radiation, a visit to Dr Nghiem and a cruise. I hope I can work out the schedule to take the cruise out of Seattle.
Our 49th Anniversary was June 3. We went to red Lobster to celebrate although Judy has misgivings about the date since my first surgery was done on June 3, one year ago. I must say I was not impressed by the food although I am sure it was in part due to my diminished sense of taste. We received a gift basket of Canadian chocolate bars, maple sugar and shortbread cookies from Gary, Dana and the girls. The Nestle Crunch bars tasted almost as good as I remember them.
I have been feeling pretty good this past week, so I am not looking forward to round 3. It starts with labs and an examination by Dr Flam. My hemoglobin remains at 11 grams. My WBC are 9,900 again normal and my platelets are 166,000. This is also normal. So far I have tolerated everything well, with only complaints of dry mouth, decreased taste and some tenderness of my gums. No hair loss although the hair on my head and my beard are growing only very slowly. I guess I got the buzz cut prematurely. I don't think I am significantly worse today than I was after round 1.
We arrive early, at 8:00 AM. I am done by 3:30 PM.
I am not uncomfortable during the chemo although I am running to the bathroom every 20 minutes towards the end.
About a week ago, Bert, my bridge partner and good friend suffered a stroke. He lost the ability to speak, but no other functionality. He was in the hospital for a few days and is expected to make a full recovery.
I spoke with him on Saturday and he was quite lucid, although he was often still unable to find the words he needed. We had finished first and second the two last times we played bridge. I played with Jill Friday and we won. I played with Byron yesterday and we won.
I will wait to play bridge again probably until a week from Friday, hopefully with Bert.
Our dear friend Bonna came for breakfast on Saturday and she brought us a chicken noodle cheese casserole which we will have for dinner tonight.
Eva slept here Sunday night. She will have her hair cut tomorrow and donated to Locks of Love to make wigs for cancer patients in my honor and also in honor of her grandmother on her mother's side who died of lymphoma and/or breast cancer.
We had dinner with our good friends Carol and Larry Saturday and then they came here to play some bridge. I see significant improvement in their game.
That's the news from here. We are trying to keep busy, but I am not looking forward to the next week.
Go Giants.

My Follow-up With Dr Flam

2011-05-31T13:39:00.000-07:00

Judy went with me for this visit. The appointment was for 10:00 AM but we knew we were in for a long wait when we saw tho waiting room was almost standing room only. I guess when you have cancer, you better leave your type A personality at the door. In addition to being the first day of a short week because of Memorial Day, Dr Flam was just back from vacation.
I had the usual labs, and was seen about 11:45 by the doctor.
The labs were not bad. WBC back down to 10,000. Platelets 100,000 and hemoglobin down to 11.0.
Overall, Dr Flam was pleased. I showed him some irritation in the back of my scalp which he called small pustules, likely staph infection, and suggested I wash the area 3X daily with pHisoderm soap. He also suggested I stop wearing my baseball cap, the band of which could be causing irritation. He was quite surprised that my hair was not falling out yet. Perhaps I shaved it off prematurely.
We now have a plan of action. One more cycle of chemo followed by a PET/CT, most likely around June 24.
On a sad note, my mother seems to be doing badly. She is down to 66 pounds. She is becoming more and more withdrawn and depressed.
On a happy note, Saturday we went to the wedding of our ex-daughter-in-law, Margaret. It was very nice. We have some photos.
Rather than post the photos in this blog, I include a link to the
photos.

The photos include Gary, Dana who was a bridesmaid at her husband's ex wife's wedding, Eva a Jr. bridesmaid, Sara, age 4, Bel, age 2, Judy, me, and one which includes the bride.
Families are so much more complicated than they were when I was growing up.

My Follow-up Medical Appointment

2011-05-24T14:11:00.000-07:00

Today, I went back for my appointment. Dr Flam is out of town so I saw his assistant, Marina.
I had labs done as per the routine. Today, I was fasting as I wanted to document a normal blood sugar fasting. The last was 176, and fasting, it was 110. This is an indication that I am not diabetic. Hemoglobin is 11.6, up from 11.2 two weeks ago, platelets normal at 162,000. The interesting result is that my white count is 20.8 thousand. This is elevated and raises the possibility of a significant infection. However, an internet search suggests that this is result of the injection of Neulasta.
I do not have symptoms of infection apart from mild sore throat and gum tenderness.
My constipation has passed, so to speak, after stopping Zofram, and there is no nausea. My mouth is dry. Taste is diminished. We went to the salad bar last night for dinner. Most evident is the loss of the ability to taste sweetness. The tapioca pudding, a favorite of mine tasted like they forgot to put the sugar in it.
The mental fog and fatigue have disappeared.
My hair is still there. Perhaps I got the buzz cut prematurely. Hair growth has slowed, and I need to shave only every 3-4 days.
I plan to return to the bridge club to play Friday afternoon.
We are invited to a wedding on Saturday and we plan to go. The bride is our son Gary's first wife, Margaret, (Eva's Mom). They are all on good terms. I would like to see a survey of what percentage of people are invited to their ex daughter-in-law's wedding. I would guess not more than 15%. We were happy to be included.
Eva will be a junior bridesmaid, and I hope to grab a few photos for the blog.
Our very good friend, Andrea, sent me an email about playing the "Cancer Card". She is a miraculous 20 year survivor of breast cancer for which she was given only a short time to live.
"One day, when I was still in the middle of pretty heavy chemo, we decided to go to the Spaghetti Warehouse for dinner. The place was mobbed and people were all but hanging from the chandeliers. In horror, I mentioned to the hostess that we better not stay because I was so fatigued from all the chemo and couldn't sit up long enough to both wait to be seated and eat dinner. She assured me that there would be no problem, and =Bingo!=we were the next ones seated. Hmmm, I thought to myself. Magic. This isn't all bad."
I don't plan on playing the card routinely, but will keep it in mind as my "ace in the hole".

A Clarification About the Subpoena

2011-05-23T09:20:00.000-07:00

Rereading my last post, I am afraid I may have left the wrong impression about who issued this subpoena. It came from the attorneys representing St. Agnes Medical Center of Fresno. It did not come from the plaintiff's attorneys.
The contact name is an associate at the law firm of Jones Day, Los Angeles office. The letterhead lists 32 locations including Beijing, Tokyo, Paris, Hong Kong, New York.

The world did not end, so I will continue chemotherapy

2011-05-22T14:19:00.000-07:00

Sunday afternoon, 5 days after Cisplatin, 3 days after my last dose of VP16.
This week has produced more severe symptoms than round 1.
Nausea has been worse. I have still been able to control it fairly well with the medications. The Zofram seems to be associated with constipation and I am now on my third day day without any action. I will not make the mistake of straining and will await the effect of prunes and laxatives.
Yesterday, I treated the nausea with a product legal in California, and I must say it was very effective.
In fact, last night I had the best night of sleep in a few weeks.
Today is the first day I have not felt the severe fatigue of the past few days.
My taste buds are slowly fading away, but I have not completely lost my sense of taste. However, even after the "product", snacks did not taste as good as I might have expected.
I expect that in the next few days I will feel better, but round 3 will be worse than round 2.
I have an appointment with Dr. Flam Tuesday morning but he will be out of town, so I will see his assistant, Marina. The main thing will be the labs, and I will go fasting to the appointment to get a better idea about my blood sugar which has run in the 170's after Boost Plus.
I received a subpoena for tomorrow morning to testify in a trial where a former associate of mine and St Agnes Medical Center are in a dispute. I received the subpoena Thursday night for Monday morning. I was never deposed or given any warnings. I called the attorney who was named on the subpoena, and after a brief conversation in which I played the cancer card, I was told they wouldn't need me. I guess having cancer isn't all bad.

End of Round 2, I'm Still Standing

2011-05-19T14:32:00.000-07:00

Today, I completed round 2 of chemotherapy. I still have to go back tomorrow for a shot of Neulasta to build up my white count. My labs today were all good except my blood sugar which is about 175, bit taken after Rice Krispies, raisins, bananas, and Boost Plus. I think this accounts for the elevation. I am more nauseated this time than last, and have added generic Compazine to my list of medications. I think it is giving me a Parkinsonian reaction as I notice a tremor as I type this. My mouth is still quite dry, my taste buds have not deteriorated further, and I have been getting up every 2 hours to empty my bladder. Otherwise I feel well.
Judy has been having shoulder pain without any trauma but with a sudden onset. I presume it is bursitis.
Rocky woke us up this morning with vomiting. There's never a dull moment around here.
We went to a birthday party for Bob Savluk Saturday evening (May 24). He is a member of our Poker group and was celebrating his 60th birthday. It was a wonderful casual but eloquent party.
Another member of the poker group, Howard Watkins took photos. Below are two of Judy and Me, one with a hat and one without.

My hair has not yet begun to fall out but this is a preview.
Judy looks great in these pictures, and she has been wonderful during this battle. I couldn't ask for better care and support than what she has so cheerfully offered.

First Round of Chemotherapy, Observations After Two weeks

2011-05-11T14:34:00.000-07:00

A side effect of my chemo has been a dry mouth, loss of taste, and a lack of desire to drink much fluid. I began to note my bowel movements resembled small marbles, which passed without difficulty. However, for a few days prior to last Saturday, (May 7), nothing. No urge to go, no abdominal discomfort. I began to take oat bran, Metamucil and Colace. Still, nothing.

Saturday morning, I finally felt the urge to go. Into the bathroom, seated on the toilet, and the struggle began. I am trying to push out a solid rock, hard as steel, painful and immovable. With due respect to all women who have delivered a baby, this must be as close as I can ever come to that. I wanted an epidural. I would have cheerfully done an episiotomy on myself if I could. It got to a position, halfway in, halfway out, and got stuck. I trained in ob/gyn as a resident for 6 months. I wanted to try obstetrical forceps. After about half an hour of pushing, finally, success. I was bleeding. My rectum was on fire, I grew hemorrhoids I never knew I had. They still have not gone away, 4 days later. Every visit to the bathroom gives me a chance to relive this experience.
I visited Dr. Flam this morning. He has a cold and wore a mask and sanitized his hands. I hope I don't catch anything. All is going well.My white cell count has risen from 3.8 to 6.6 thousand. My platelet count has improved from 67 to 116 thousand. However, there has been a small drop in my hemoglobin from 11.7 to 11.2. I suspect this may be at least in part from my forcing fluids to keep from mixing more concrete in my colon.
Other symptoms include dry mouth, inflammation of the gums and nose, and leg cramps. The leg vramps seem to effect new muscles in the side of the calf rather than the usual calf cramps. They don't respond well to external squeezing, but seem to improve with walking and a heating pad.Dr Flam recommended
CO-Q 10, 200 mg for this. I will start with 100 mg.
I am also taking Colace, a fiber laxative and will try prunes.
I have to say that if I didn't know I have cancer, life would be pretty good right now. I am not working and am enjoying spending time in a non-productive way. I am still going to the bridge club and I have confirmed on the ACBL Web Site that i have attained the rank of Gold Life Master. On Monday afternoon, Bert and I came first of 11 north/south pairs.

All this has taken a toll on Judy who composed this small essay to describe her feelings.

FIND THE TIME
You're so busy.
Never enough time to do all the things you need to do.
Running here, running there, wishing you had more free time.
And then your life changes.
You're diagnosed with cancer.
Suddenly you have the time to run from doctor to doctor, being poked, X-rayed, Radiated and getting chemo.
Amazing how life suddenly changes and all those important things that kept you so busy
Can now so easily
Be put on hold.

Polyoma Virus Information

2011-05-05T14:43:00.000-07:00

This stuff is beyond my ability to comprehend, but from what I can put together, the story is like this.

In the 1950's, there was pressure to begin inoculating the general population against Polio. This came both from the general population as there was a high level of anxiety about the disease which caused paralysis and death among many of its victims, and also from the companies racing to get the vaccines on the market for financial gain.

The initial doses of the vaccine were harvested from monkey kidneys and the virus was inactivated by formaldehyde. The Polyoma Virus was a contaminant, slightly more hardy and not inactivated by the amounts used. I have read some estimated of up to 50,000,000 doses of the vaccine were contaminated before they switched breeds of monkeys. The vaccine was given in the mid 50's.

The evidence of a cause and effect relationship between MCC and the virus is circumstantial. The virus is present in 80% of MCC patients in the USA, but not more than 60% of the general population. People with a reduced immune response are more susceptible to the disease.

MCC can be effectively treated locally by Beta Interferon, injected locally. Beta Interferon is an anti-viral drug.

The Polyoma virus is not found in MCC cases in Australia.

Please Note. The virus has mutated and there is no threat of human to human transmission of the virus.

Below are some abstracts.

Merkel cell polyomavirus and MCC

2008: Feng, Moore, Chang discovered a new human polyomavirus, the Merkel cell polyomavirus Virus integrates in the genome of most MCC tumors in a clonal pattern (Feng H et al., Science 2008) Viral DNA present in ~80% MCC tumors MCPyV proteins are present and persistently expressed in > 50% of the tumors

~60% of US population has specific antibodies to the MCPyV capsid protein (Carter JJ et al., J Natl Cancer Inst. 2009) ~90% of MCC patients are sero-positive to the MCPyV capsid protein supporting a continuing role for this new virus in most MCC tumors

Mutation pattern in the large T oncoprotein are highly suggestive of a role in this cancer (N terminal – pro-cell cycle portion is conserved: C terminal – genomic instability generating region is deleted in most tumors) (Shuda et al., Proc Natl Acad Sci U S A. 2008)

Additional References:

1. Garneski KM, Decaprio JA, Nghiem P. Does a new polyomavirus contribute to Merkel cell carcinoma? Genome Biol 2008; 9(6):228. Click here for a PDF.

A review of polyomavirus biology and its possible relation to cancer.

2. Garneski KM, Warcola AH, Feng Q, Kiviat N, Leonard JH, Nghiem P. Merkel Cell Polyomavirus Is More Frequently Present in North American than Australian Merkel Cell Carcinoma Tumors. Journal of Investigative Dermatology 2009; 129, 246–248. Click here for a PDF.

North American and Australian tumor samples were evaluated for presence of MCPyV and a higher incidence in North American samples were positive for MCPyV when compared to Australia, suggesting a possible strain variant.

3. Feng H, Shuda M, Chang Y, Moore P. Clonal Integration of a Polyomavirus in Human Merkel Cell Carcinoma. Science 2008; 319:1096-1100

A technique called digital transcriptome subtraction (DTS) was used to identify a new virus, which is a previously unknown polyomavirus that we call Merkel cell polyomavirus (MCV or MCPyV). MCPyV sequences were detected in 8 of 10 (80%) MCC tumors (lower incidence in non-MCC tumors).

4. Carter J, Paulson K, Wipf G, Miranda D, Madeleine M, Johnson L, Lemos B, Lee S, Warcola A, Iyer J, Nghiem P, Galloway D. Association of Merkel Cell Polyomavirus–Specific Antibodies With Merkel Cell Carcinoma Journal of the National Cancer Institute2009; [Epub ahead of print]. Click here for a PDF.

Merkel cell polyomavirus (MCPyV) has been detected in approximately 75% of patients with the rare skin cancer Merkel cell carcinoma. We investigated the prevalence of antibodies against MCPyV in the general population and the association between these antibodies and Merkel cell carcinoma.

My Visit With Dr. Flam

2011-05-04T20:32:00.000-07:00

First, the labs were done. My Platelet count has dropped from 236,000 to 67,000. My white count has dropped to 3200 from 6400. My Hemoglobin is stable at 11.7 grams. When I saw these results, I was somewhat worried but Dr. Flam seemed to feel that this was a normal reaction to the chemo and that I was doing well. He is encouraged by the improvement in my symptoms, which he feels is an indication that the chemo is working. In fact, he is suggesting imaging after the second round of chemo, possibly with an eye towards following up with more radiation to the posterior mediastinal mass, assuming it is responding well to the chemo as verified with imaging.
This is all very encouraging.
Meanwhile, I am having only minor symptoms. Constipation for which I have started Colace (generic).
My sense of taste has lost something since I started the chemo. No metallic taste, but food does not have the full flavor it had recently. Part of this is a holdover from the radiation treatments. My mouth remains dry and there is some inflammation of the gums.
I finally have learned that I do indeed have evidence of the Polyoma Virus. I have antibodies to the T-Antigen of Merkel cell polyomavirus, according to Dr Nghiem. I suspect I received it in the mid 1950's when given the Salk Vaccine.
I have been interviewed for the the NCI Cancer Bulletin, a free online newsletter published every other week by the
National Cancer Institute. The interview was conducted by phone today. When the article is printed, I will post a link to it. The interview was conducted by Edward "Ted" Winstead. He has previously written about MCC for the NCI.

Article 1
Article 2

Update Five Days After Cisplatin

2011-05-02T19:34:00.000-07:00

It is Monday, May 2, 2011. On Friday, I had the third session of chemotherapy with VP16, along with all the other medications they routinely give. This went off without incident except that they wanted me to have labs drawn, and made me wait for the lab tech to draw the blood when I could have been starting the chemo. It makes no sense to stick a vein when the port is going to be used the same time for chemo. On days when there is no chemo, get the labs from a vein. On days when there is chemo, get the labs from the port. This resulted in a half hour delay in getting started, no big deal.
On Saturday, I went for my shot of Pelfilgrastim (Neulasta), a drug which stimulates the growth of healthy white blood cells. The shot is given into the subcutaneous tissues. I took mine in the left arm. There is a 30% incidence of bone pain from this drug but I had no symptoms.
Neulasta Link
On Wednesday, I have an appointment with Dr Flam. The following Wednesday, again, and the second round of chemo will begin May 17.
I am feeling fairly well at this time. The spasms in my chest have reduced. Could this mean the chemo is working? I am more fatigued than I am used to, going to bed at 10:00 PM instead of close to midnight. I am having some constipation without significant discomfort, and waking every 2 hours to void. I suspect this may be due to the Zofram, which I stopped this morning as I am not at all nauseated.
Zofran Link
The surgical site in the abdomen and the port insertion site have healed well.
I a trying to resume some activities, going to the bridge club today and tomorrow morning, driving, walking the dog and watching the inept San Francisco Giants blow baseball games.
I hope to post a follow-up after my visit with Dr Flam.
I thank the so many people who have offered their prayers and encouragement.

Chemotherapy-Day 2

2011-04-28T18:42:00.000-07:00

Chemotherapy-Day 2
All went according to plan. I arrived at 8:15 AM and the infusion room was empty.
First was Solucortef and anti-nausea medication. Then 1000 cc of normal saline, followed by the VC16. I was out by 12:15. The needle was left overnight in the port but I had them pull it today so I can take a real shower tonight. The skin over the port seems to be healing well. The steri-strips stay until they start to fall off. During my treatments, several patients arrived for treatment needing new IV's. Watching the interaction between patient and nurse reinforced the conclusion that I had made a wise choice to have the port placed.
I am having very few symptoms. My voice is slightly hoarse and I am having some constipation. I managed to pass some rocks which seemed to help. I'll start Metamucil tomorrow morning.
I am getting the occasional hiccups. I was given a prescription for Reglan which I will try if the symptom gets worse.
The generic for Zofram anti-nausea drug was not approved by by our Medicare Part D provider. $21.95 for 8 pills. An advisor at Dr Flam's office, Patty, who was very helpfull, established my right to coverage under Medicare Part B as I am having "in-office chemotherapy". This reduced the price to $7.30. Out of interest, she called Winton's Pharmacy in Fresno and got a quote of $1200 for 100 non-generic Zofram. What a racket.
Tomorrow should be a repeat of today, and then a brief visit Saturday for a subcutaneous shot of Neulasta.
Symptom to expect as a result of the Solucortef: Insomnia.
Symptom to expect as a result of Chemotherapy: Fatigue.
What a combination. Fatigue but insomnia. Can't stay awake, can't fall asleep.
So far it is a draw, as I fell asleep without difficulty, but my old man prostate woke me up after about 3,5 hours and then it was very difficult to get back to sleep,
Stay tuned for updates.

Chemotherapy. Day 1

2011-04-27T23:24:00.000-07:00

I arrive at The hematology Oncology office almost promptly at 8:03.
I sign in and sit and wait. Apparently Wednesday is the busiest day and they have added Dr Rao to the practice and he brings 125 patients.
After about 25 minutes, they call me to the lab. I refuse to submit to more labs because Dr Flam ordered the labs at St Agnes to be done Monday, just 2 days earlier, after a discussion which went something like this.
Dr Flam: You'll need labs before the Chemo. I could just get them here or at St Agnes since you'll probably need labs before they place the port.
Me: OK, let's get them at St Agnes.
Dr Flam: OK. I'll write the order.
And he did.
However, the labs are not immediately available, not having been filed in my chart.
Dr Flam: We can get them from the computer.
Nurse: The computer is down.
They did find my labs and my Hemoglobin is creeping up towards the normal range, at 11.8 from I think 11.1 three weeks earlier.
So they will draw blood from the port for serum iron and iron binding capacity.
9:00 AM. After a brief examination, I am sent to the small room for my Chemo. There are about 5 LazyBoy chairs down one side of the room. I grab the only vacant one. There are four sofabeds with elevated knee support on the other side of the room, all empty but soon to fill up. To my left are two very large bathrooms with folding doors. I decide they are not very private and will be used only in an emergency.
A very experienced nurse named Bill checks my port. He accesses it using a special needle called a Huber needle which has a 90 degree bend and tapes easily to the skin. Before inserting the needle, he numbs the skin with Ethylene Chloride spray, and I don't feel the needle. They draw my blood and begin treatment.
I am given Aloxi 0.25 mg bolus,
Next was Emend, 150 mg.
I am pre-hydrated with 500 cc of normal saline to which potassium chloride (KCl) and magnesium sulfate (MgSO4).
Sorry, I don't know the doses.
At about 10:30, they bring in the big gun. Cis Platinum 170 mg with 40 mg KCl, 12 mg of MgSO4
and 20 mg of Lasix. Lasix is a drug which increases urine production. It is used to prevent nephrotoxicity. (Kidney damage). 10 mg of decadron is also given. It is basically IV cortisone. This is in about 3000 cc of fluid, I think normal saline.
The infusion is about 3 hours. I sleep part of the time. Judy goes home and comes back at lunchtime with a sandwich from Subway, a soda and lemon yogurt.
Judy leaves to pick up my anti-nausea pills.
Zofram (generic name is Ondansetron) 8 mg twice a day.
Compazine (generic name is Prochlorperazine) 10 mg as needed 6 hours apart.
The insurance may not cover the Zofran, about $21 for 12 pills. No biggy.
At about 2:45, The second gun arrives. 100 mg of VP16 in 250 mg of normal saline.
I lost count of the number of visits to the bathroom, but my best estimate is 7. Fortunately, I found a more private bathroom.
I must say that the first day went surprising well. I was not sick. I had no nausea. I was comfortable and I got to meet new people.
To my left was a young man, about 35, with a lovely young woman, perhaps his wife or sister. He was also receiving cis platinum.
He has a rare testicular cancer, choriocarcinoma and they have given up on trying to cure him. The treatments for him are designed for slowing the spread of already widespread disease.
To my right was a man who was quietly playing cribbage with a woman, I presume his wife. Suddenly, he developed terrible chills and was in agony for about 20 minutes, perhaps because of an infected port. After the chills resolved, he was vomiting.
We left at about 4:15 PM.
I return Thursday and Friday for shorter sessions, just the VP16.
On Saturday, I have to go for an injection to stimulate my bone marrow. I think it is Neulasta.
I will post again about this.
After we returned home, it was a quiet evening. I have had no symptoms. I ate a good dinner, drank some fluids and we watched the Giants (they lost) and American Idol (James Durbin would get my vote if I voted).
I have now accumulated enough master points on line to become a Gold Life Master of the American Contract Bridge League.
So what did I learn today?
1. Chemo may not be as bad as I expected.
2. There are other patients who are much worse off than me.
3. I can find the bathrooms blindfolded while dragging my IV pole.

I get a Buzz Cut

2011-04-26T12:18:00.000-07:00

Chemotherapy begins tomorrow. I decided that I don't want to wait for my hair to fall out so I got it all cut off today. Here is the new hairless me.

The bandage is from the port insertion. Below is a photo of my chest to show the location of the incisions.

The larger bandage covers the incision through which the port is placed. The port lies under the skin. The smaller bandage covers the location where the catheter is placed in the jugular vein. They tunnel the catheter from the port to this incision and then insert it into the vein. It is all done with local anesthesia, but thanks to the magic of Versed , I have no memory of this.

This is the best photo I could find of the port itself from the Bard website. There are two wells into which the drugs can be injected. Each is delivered through a separate lumen in the catheter to the Superior Vena Cava. The ports are strong enough to take a pressure injection for contrast enhanced CT. Supposedly, the port does not degrade CT or MRI images.
I am feeling quite good. There is mild discomfort at the incisions controlled well by Extra Strength Tylenol, a drug which I rarely take as it usually does not work for me. I prefer Advil but they want me to stay off it for now.
I hope to be feeling well enough tomorrow to post my experience with the first day of chemo.

Port Inserted Today

2011-04-25T13:08:00.000-07:00

We arrived at St Agnes Medical Center at 7:00 AM.
I met Joe Cerillo, a longtime colleague with whom I have worked 20 years or more. He is a technologist who works in interventional radiology. He told me he just completed chemo for non-Hodgekins lymphoma. He had a port which was recently removed. I wonder if his disease is the result of radiation exposure. For that matter, I wonder if my condition is also caused by radiation exposure. I know there is a relation with sun exposure.
I met Dr. Nguyen, an interventional radiologist. He has placed more than 300 ports. He likes to place them in the subcutaneous tissues of the right upper chest. That was fine with me as the left jugular vein is scarred by the radiation treatments. The procedure went off on time and without incident. It is a duel lumen power port, meaning that there are actually two ports to inject, so two drugs which may not mix well can be injected simultaneously. It is capable of receiving injections from a pressure injector such as the type used to inject IV contrast for CT scans. It looks like it is made of plastic so it will not interfere with CT or MRI imaging. The port itself sits on my upper right chest wall. The catheter is tunneled to the lower neck where it enters the jugular vein.
Thee procedure was completed by 10:00 AM and I was able to leave shortly after 11:00 AM. It is now 1:00 PM and there is no pain from the incisions. I have no memory of the procedure itself, due to the effects of Versed and Fentanyl.
Joan Rivers described "Jewish Natural Childbirth" as follows. Put me out with the first pain and wake me up when the hairdresser comes.
This was the "Jewish Port insertion."
As I will not begin chemo until Wednesday, I will have a buzz cut of my hair tomorrow. That way, I will not have to worry about sweeping up falling hair.
I hope to post a picture of myself tomorrow, pre chemo with a buzz cut.

My PET scan results

2011-04-22T19:31:00.000-07:00

I went for my PET scan today. I have been having increasing discomfort in my lower chest and anticipated that my posterior mediastinal mass would be larger and pressing on my distal esophagus causing the symptoms. I was hoping there would be no evidence of new disease. This Merkel Cell carcinoma can grow as fast as any malignancy I know about.
I had to be on a sugar-free diet for 24 hours prior to the examination. Last night, we had Gary, Dana, Eva, Sara and Bel over for a mini-Seder. I could not enjoy much of the cooking, but everyone had a good time.
No breakfast this morning. I arrived for my scans at 8:15. They put me in a very cold room with a heating pad on my arm to start the IV. Of course, in the cold, your veins constrict, but the IV was started without incident. My blood sugar was 105, a good number. They injected the radioisotope without incident and then I had to wait 1 hour for it to spread through my body. It concentrates in areas of high metabolic activity, such as tumors, healing surgery sites, brain and kidneys. There was alot of activity in my brain, probably, like Cassius from Julius Caesar, I think too much.
After the hour, it is 35 minutes to be scanned with the warning to stay perfectly still to avoid image degradation. Of course, as soon as the scans began, my ear and my nose began to itch. I needed to clear my throat, and the blowing of cool air over me for ventilation made my face itchy and gave me the urge to sneeze. 35 minutes seemed like hours. I left at about 11:30 AM and returned at 2:00 PM to review the results with Dr. Dan Stobbe. He is a longtime colleague and friend.
Below are sample images from the scans.

The image on the bottom right is a coronal image. The areas in black show high levels of activity. The brain at the top, the bladder at the bottom, and the tumor in the middle. The image at the top left is a color rendition in the axial plane showing my heart in gray, my lungs in black, and the tumor in yellow in front of the spine which shows up in white. The esophagus shows up on other images, pushed to the left. This is the cause of my symptoms.The tumor now measures 5.8x2.6x5.0 cm. On March 17, it was 2.6x3.8x3.7. The original measurements last November were 4.5x3.7x3.5.
There was no other convincing evidence of tumor growth.
So what does this mean to me?
The good news is that there is no new disease. This mass is causing my symptoms and there is no unexpected finding. It can be followed with serial PET scans to monitor the effectiveness of treatment.
Should the chemo shrink the mass, it might be removable by laparoscopic technique assuming no new disease develops during the chemo.
The bad news is that the experimental treatment with a small radiation dose was not effective, although the mass did initially shrink.
I received a call from Dr. Flam's office delaying the start of chemo to next Wednesday.
After visiting Dr Stobbe, I went to see my CPA who has my tax audit under control.
Some good news. I have made it to within 1-2 points of the 2500 I need to become a Gold Life Master at Bridge. I will get there before the Chemo begins.
I hope to post again to describe the insertion of the port from the patient point of view. I have inserted many ports, so the difference in perspective should be interesting.
This morning, there were flowers on our doorstep. Beautiful roses.
Thanks Bonna.

An Innocent Man

2011-04-21T12:05:00.000-07:00

I read a book by Gresham, not a novel, about innocent men convicted of murder on death row. It was called "An Innocent Man".

I think in some ways I am the Innocent Man. I may be on death row. My team of attorneys is my medical care providers. My appeals are through chemotherapy. The judge is God. I committed no crimes. I may be on my final appeal.
After a trouble-free day of travel, I am home. I will have pleasant memories of this trip. My Mother is frail and weak, but seems to be very stable for somebody who will soon turn 94.
We had an unexpected visit from Willie Kravitz and his daughter Meredith on Monday. Willie is "the 4th son". He and his wife Elaine became very close with my parents when they lived in adjacent apartments. My parents baby-sat for Meredith when she was an infant, but she is now all grown up.
We had no Seder to go to because of issues which my brother's wife Gertie has with my mother, so we had dinner at Place Kensington. They did serve Matzah-ball soup, Gefilte fish and "Matzah Bread".
We saw an interesting movie called 'Gentleman's Agreement" with Gregory Peck, from 1947 about anti Semitism. A Christian writer pretends to be Jewish to research an article on anti-semitism. If you have a chance to see it, it is worthwhile.
Here is the countdown:
5. Today,
4. Friday. PET scan in the morning, CPA for my audit and to prepare my belated 2010 tax return in the afternoon
3. Saturday
2. Sunday, my last day of reasonable comfort
1. Monday. 7:00 AM to St Agnes for insertion of a port
0. Tuesday. Chemo begins.
I hope to be able to continue this blog through my chemo.

My Visit to Montreal

2011-04-17T18:53:00.000-07:00

It is Sunday, April 17, 25 days after my laparoscopic surgery. The incisions are healing well. There is some discomfort in the area of the largest incision which is at the belt line. I feel more comfortable not wearing a belt.
I arrived late Friday, about 1 1/2 hours after the scheduled arrival time, delayed by a storm in Chicago. Lenny met me at the airport and took me home to have a snack of Montreal bagels and lox.
I met them again for brunch Saturday, and then they left for Toronto for Passover.
I arrived at my Mother's place and met my brother Robert and my nephew Peter. We went to Ty Breiz for lunch. I had my favorite Montreal Onion soup. It was great, Later in the afternoon, both Mom and I had GI upsets, perhaps because of MSG in the soup.
Today, I spent the day with my mother again. We spent the morning watching the 25th anniversary DVD of Les Miserables. It was wonderful, and I was in tears the whole show. We were visited by Andrea and Ben and my new Grand-niece who is only 2 weeks old. Her name is Alexandrea Lauren Urovitch, nicknamed Alex. My brother was also there.
They brought chinese food for lunch. After they left, Robert and Mom and I went for coffee at The Second Cup. I hung with my mother until 9:00 PM.
I have to say that I am not feeling 100%. I still am having GI upset.
My mother also seems as frail as I have ever seen her. She has also had GI upset and at dinner today, complained of dizzyness. I was somewhat concerned, but about an hour later, she ate a good meal of Won Tons, and I felt better about her.

Here is a photo of Alex and yours truly. She slept in my arms for about half an hour. You never forget how to hold a baby.

A Brief break, Then 3-5 Months of Chemo.

2011-04-07T16:08:00.000-07:00

My Pre-Chemo Photo

First, the good news.
I have my reservations for Montreal. I leave Fresno April 15 and return April 20.
I am looking forward to spending time with my mother and meeting my new, as yet unnamed great-niece, as well as with my brother Robert my niece Andrea and her husband Ben, the proud parents.
I am recovering well from the surgery and should be feeling fine for the trip. When I get home, it will be down to business.
I called up Dr. Flam yesterday and he agreed to see me yesterday although my appointment was for April 12. He is on board with my trip to Montreal as I need time to heal from the surgery before the chemotherapy.
He patiently answered all my questions. I have discussed this with Dr. Nghiem and he is in agreement.
I did have the Pneumonia Vaccine at this visit.
I will get home April 20, a Wednesday.
On April 22, the Friday, I am scheduled for a PET scan to look for any evidence of new disease.
On Monday, April 25, I will go to St. Agnes Medical Center, my old stomping grounds and have a port inserted. I will also have lab work done.
On Tuesday, April 26, Chemo begins. Cisplatin and Etopiside IV.
On Wednesday, April 27, Etopiside and IV fluids to protect my kidneys.
On Thursday, April 28, repeat of Wednesday
On Friday, injection of a drug to stimulate my bone marrow. I didn't catch the name but will post it when I have it.
On Mondays, lab work to follow my red and white cell count and renal function.
Other than that, I have the next two weeks off and the next cycle begins May 17.
After three cycles, repeat imaging to try to determine if it is working.
A total of as many as six cycles is planned if I can tolerate it.
I have a package listing the side effects and how to mitigate them.
During the injections, drugs are given to combat nausea. I will lose my appetite, likely suffer nausea, vomiting, diarrhea and constipation. I may develop sores in the mouth and throat. There will be alteration of sense of taste, something I complained bitterly (pun) about when I had the radiation. Again dryness in the mouth.
Peripheral neuropathy, with numbness of the extremities is common. There can be liver and kidney damage.
Hair loss! That will be the least of my worries. I don't have that much hair left.
Dr Flam says I should be able to spend time with my grandchildren during the chemotherapy unless they are obviously sick. I should be able to go to the Bridge Club and even work during the off weeks. I am not planning to work at that time.
I am optimistic that I can get through all this with minimal side effects, as, apart from my cancer, I am in good health. In fact, since we made the diagnosis of Merkel's, I haven't had so much as the sniffles.

A Plan

2011-04-05T17:05:00.000-07:00

I had a long conversation with Dr. Nghiem today. He is not against my having chemo, but is also not strongly in favor of it. We discussed the pros and cons, and I have come to the conclusion that it is worth the risk and misery to try to defeat this monster of a disease. Judy has come up with a great idea. it is not an urgent matter to begin the chemo immediately. Unless Dr Flam is able to convince me otherwise, I will visit my mother in Montreal and on my return, have a port placed and begin the chemo.
I will likely leave towards the end of next week and stay for about five days.
My Niece and nephew in Montreal just had a baby girl, as yet unnamed, and I will have the opportunity to see her as well.
This will be my last chance to travel for a long time so I will make the most of it.

12 Days Post-Op

2011-04-04T21:05:00.000-07:00

Today I had my follow-up appointment with Dr. Felix. I never cease to be amazed at the way communications seem to fail. When I made this appointment, Dr. Felix wanted me to get a CBC. His office was supposed to fax a request to Dr. Flam's lab. When I arrived at Dr Flam's lab this morning to get my blood drawn, nobody had the request. They drew the blood and did the studies in any event. I requested that the report be faxed it to Dr. Felix's office. When I arrived for my appointment at 1:45 PM, of course, the results which take about 5 min. to obtain, were unavailable. I also learned from Dr. Felix that he had to read the path report on my blog. It was never sent to him from the hospital. Chalk one up for the universal medical record.
When the result was finally available, it turns out that my hemoglobin was 11.5 g. This is a substantial improvement from 8 g when I left the hospital.
All of the incisions on my abdominal wall are healing well. There are no stitches to remove, and I will be able to finally wash my abdomen with soap. Of interest is that although the pathology report suggested the tumor reached the serosa (outer lining) of the small bowel, Dr. Felix thinks that this is a result of the surgery. When the tumor is removed, it is actually placed within a plastic bag and then pulled through the incision. This trauma damaged the outer surface of the specimen, which showed no gross evidence of tumor infiltration at the time of surgery.
My apologies to Dr. Felix. I reported that the incision was about 6 cm in length. Actually, the measurement is 4.5 cm.
My next step will be to confer with Dr. Nghiem and with Dr. Flam about chemotherapy. The more I read about it, the more terrified I become.
Here is a link to Cisplatin side effects

These are the less common Cisplatin side effects (occurring in 10-29%) for patients receiving Cisplatin:
Peripheral neuropathy: Although less common, a serious side effect of decreased sensation and paresthesia (numbness and tingling of the extremities) may be noted. Sensory loss, numbness and tingling, and difficulty in walking may last for at least as long as therapy is continued. Neurologic effects may be irreversible.
High frequency hearing loss. Ringing in the ears.
Loss of appetite
Taste changes, metallic taste
Increases in blood tests measuring liver function.
Death from the therapy in about 2% of patients.

The following Cisplatin side effects are common (occurring in greater than 30%) for patients receiving Cisplatin:
Nausea and vomiting. Nausea may last up to 1 week after therapy. Anti-nausea medication is given before the infusion, and a prescription is also given for use after.
Kidney toxicity. Effects on kidney function are dose related, observed 10-20 days after therapy, and are generally reversible.
Blood test abnormalities (low magnesium, low calcium, low potassium)
Low white blood cells (this may put you at increased risk for infection)
Low red blood cells (anemia)

This will be a major undertaking and I will have to balance the potential gain with the risks of spending my remaining days in misery.

I would be very much interested in hearing from people who have undergone the treatment as to in their personal experience, it was worthwhile.

I have my Pathology Report

2011-03-29T09:46:00.000-07:00

The tumor is reported in a two page dissertation describing the specimen grossly and microscopic with multiple special stains.The bottom line is that the lesion is an ulcerated and necrotic focus of metastatic Merkel cell carcinoma, extending through the bowel wall and involving the serosal surface. The small bowel margins are clear. 6 lymph nodes in the mesentary have no Merkel involvement.There is no involvement of mesenteric fat. The entire specimen measures 10.5 cm in length and up to 4.5 cm in diameter. The tumor is described as ulcerating and fungating involving 85% of the small bowel circumference.
What that all means is that the small bowel tumor has been completely removed. The good thing is that the nodes are not involved. The bad news is that it got to the surface of the bowel and I am at risk for cells having been shedded from the surface taking hold in the peritoneum and growing there.
This was obviously the cause of my anemia and was close to causing a small bowel obstruction. It was also causing my weight loss.
My last Hemoglobin was 8 grams. I need to get this up. I have had 2 iron transfusions and have begun oral iron supplements as well.
My appetite has improved and my colon has begun behaving normally.
I was feeling very discouraged last night thinking I was having too much abdominal pain for this late after the surgery. This prompted a careful inspection of my abdomen. I realize that there is a 6cm horizontal incision in my right upper abdomen. This is larger than I had originally reported. I thought the largest was in the umbilicus. However it makes sense that the specimen was removed intact and measured up to 4.5 cm. This cheered me up, thinking that the continued pain is appropriate. I have taken some Advil for pain but did not fill my prescription for narcotic pain relief. A heating pad has been helpful as well for back spasms.
Yesterday, I called my accountant and asked him to get an extension for the deadline for filing my taxes for 2010. Then, in the mail, I get an audit notice for 2009.
I also got a Jury Summons. I requested a postponement based on the likelyhood of needing chemotherapy.
So here is the plan.
Follow-up with Dr Felix Monday afternoon. (April 4).
CBC Monday morning (to be drawn at Dr Flam's lab.
Follow-up with Dr Flam April 12
?Chemo? I don't think I can get away from it.

My Experience With Laparoscopic Small Bowel Resection

2011-03-27T17:04:00.000-07:00

On Monday, March 21, 2011, at 4 PM, I have an appointment with Dr. Edward Felix. Dr. Felix is somebody that I've known as a very good friend for more than 30 years. He has extensive experience with laparoscopic surgery having traveled the country teaching laparoscopic surgery. He has extensive experience with bariatric surgery and before coming to Fresno, was in practice as an oncologic surgeon. In fact, he was recruited by Dr. Marshall Flam to come to Fresno as an oncologic surgeon. I feel very confident in his abilities as a surgeon, and trust him as both a friend and colleague.

During this appointment, I find myself in the unusual position of acting as a radiologic consultant in my own case. I brought a CD with the images of my most recent CT scan, and we review the images together. One thing that surprised me was that Dr. Felix felt that he would have a good chance to remove the posterior mediastinal tumor at the same sitting, because he is frequently operating in this region repairing hiatus hernias in his bariatric surgery cases. Because I have not been feeling well, I urge Him to plan the surgery as soon as possible. He tells me the surgery will be scheduled for Wednesday morning.

On Tuesday, March 22, 2011, at 8:15 AM, I have my appointment with Dr. Flam. As always, it begins with labs. In addition to a CBC, a metabolic status panel has been requested. My labs have an unexpected result. I have become anemic. My hemoglobin is 9.5 g. This is down from about 13.5 g previously. This is quite a significant decrease and is presumed to be a result of occult bleeding from my small bowel tumor. the lab results or otherwise unremarkable. Now that I think about it, I did experience some shortness of breath, a symptom which has been unusual for me. This has occurred while debarking our Hawaii cruise when the ship arrived in Los Angeles. There was a fairly long upward sloping ramp which had to be traversed going from the ship to the terminal, and I noticed some shortness of breath while navigating this ramp. Before I am allowed to go home, I am given an intravenous iron infusion which lasts about 2 1/2 hours. Before the iron, I'm given some intravenous Benadryl in order to prevent allergic reactions. My understanding of the use of intravenous iron is that it will improve the level of hemoglobin in patients who are iron deficient, but the improvement occurs over several weeks. It is suggested that prior to the surgery, there will be packed red blood cells which have been irradiated available for transfusion if needed. Dr. Flam and Dr. Felix discuss my case.

On Tuesday evening, I received a phone call from Clovis Community Hospital. I am told to arrive late morning for a late afternoon surgery. I hate to do this sort of thing, but I have Judy call to Bluma, to get a hold of Dr. Felix for me, and it turns out that the hospital made a scheduling error and that indeed I am to arrive at the hospital by eight o'clock in the morning for a morning surgery.

On Wednesday morning, I arrived at the hospital by eight o'clock. Everybody is really very nice to me in the admitting department and I am brought over to the preoperative area where blood is to be drawn for type and cross match, and in IV is to be inserted. The technician selects a site in my left forearm, and inserts a needle and I can tell that she is not hitting the vein. She pulls back the needle and begins to apply compression without removing the tourniquet. I tell her she has to get the tourniquet off there, before removing the needle from the vein, but it is too late, and there is now a large black boot area on my forearm as a result. She makes a second attempt on the right arm which is also unsuccessful. A second nurse inserts the IV in my left forearm. I need the anesthesiologist who seems very nice. I've never met him before and have very little recollection of him. He obviously did excellent job because here I am. Dr. Felix arrives and we are all good to go. His wife, Bluma, also arrives, and when I am taken to surgery, she sits with Judy. We have some discussion about the possibility of removing the posterior mediastinal tumor, and that is left to his judgment that surgery. However the finding of anemia complicates the situation.

The next thing I remember is waking up sometime following the surgery, feeling quite comfortable except for some left-sided mid abdominal pain which it turns out to be located at the site of one of the incisions. There are four small incisions in my abdomen, the largest of which appears to be at the level of the umbilicus. The only one which is painful, however, is in the left mid abdomen. Dr. Felix visits and tells me that the tumor has been entirely removed. However, in view of my anemia, he felt it not to be in my best interest to perform the more complicated surgery. It could always be done at another time if necessary. I find myself in a hospital bed in a room by myself, attached to an IV which is plugged into the wall and which is on a pole with five wheels. There is a lighted yellow button, which I can press to administer a dose of morphine. As long as the button is lit, I can give myself more morphine. I give myself morphine injections, but they don't seem to do very much. On the other hand, I am not having very much discomfort unless I have to cough. I am placed on a liquid diet. Intravenous fluids are being administered. I need to call the nurse whenever I go to the bathroom which seems to be quite often as my bladder capacity seems to be limited. We await the important event, the passage of gas and a bowel movement. I go for a short walk with the nurse at my side, without incident.

Judy stays with me. I don't have much recollection of that evening. I do remember trying to go to sleep and having absolutely no success. The insomnia does not appear to be the result of pain. However I am lying in a rather uncomfortable position. This is one of these modern hospital beds which is designed to prevent bed sores. It inflates and then deflates and then re-inflates and the cycle is about every 35 seconds. The passage of time is excruciatingly slow.I'm reminded of the dripping faucet method of torture. In addition, I am having a small amount of post nasal drip which results in some coughing and abdominal pain. At times, I am unable to breathe either through my nose or through my mouth, although fortunately, not both at the same time. I get out of bed and sit in a chair which improves my respirations. I turn on the TV. I felt I did not want to wake up Dr. Felix and asking for sleeping medications. Instead, I watch for consecutive half-hour episodes of reruns of the TV show “Married with Children”.

Thursday morning finally arrives. I am greeted at about 6 AM by the lab tech who comes to draw blood. At about 7 AM, my breakfast arrives. The morning newspapers also provided. My breakfast consists of juice, Jell-O, and if there was something else, I don't remember. Later in the morning, Judy arrives. It is absolute the pouring rain outside. Dr. Felix arrives and by now, I have forgotten that I intended to ask him for sleeping pill for Thursday night. He seems to be satisfied with my progress. My hemoglobin has gone down to below 9 g. He explains this as viewed to improve hydration from intravenous fluids which results in dilution of the same amount of hemoglobin in a larger volume of fluid, and is not concerned by this at all. I again begin to go for short walks during the day. I'm given a device to encourage breathing. It sort of reminds me of a plastic pot pipe. You exhale as much as possible and then inhale through the mouthpiece. This raises up a blue marker which you have to get up to the arrow which is set at 1500. I'm having some difficulty at getting the marker up to the 1500 level. However I'm not terribly uncomfortable doing this. A small amount of post nasal drip, however, results in coughing which is uncomfortable. I am having some gas pains, and you're some gurgling from my abdomen, but still await evidence of colon activity. My diet has advanced to the full liquid diet. This allows the addition of sherbet, milk, and pudding.
I have visitors. My son Gary arrives with very touching get well cards from his three girls.Bert Rettner, My good friend and bridge partner also visits.
Thursday night is a repeat of Wednesday night. I have forgotten to arrange to have a sleeping pill. I spent much of the night awake in a chair. Since I woke up from my anesthetic, I have had virtually no sleep. I am making frequent visits to the bathroom to empty my bladder. With everything attached to the IV device, I am frequently getting things tangled and having to untangle them so that I can maneuver my way back and forth. I have completely stopped taking the morphine which doesn't seem to be doing any good whatsoever. I watched three more episodes of "Married with Children".
I may have mentioned before that I am not a religious man. However early Friday morning, my prayers were answered. There was an explosion of gas followed by a small amount of liquid stool. Thank God, My colon had begun to do its job. Friday morning, after a breakfast consisting of 1 ounce of cream of wheat, Jell-O, a half cup of milk, and some sherbet, and after having more blood drawn, I have an early visitor. It is Dr. Felix. He gives me the wonderful news that I can go home. I will be able to leave the hospital about 48 hours after my surgery.
Here are a few other things that I did not mention above,
I was given two intradermal injections of Lovenox in the abdominal wall. I believe that this is a drug designed to reduce the incidence of thrombophlebitis and pulmonary embolism.
I received another intravenous iron infusion.
I had to wear a device that goes around the foot that regularly is inflated and deflated, also designed to reduce the incidence of pulmonary embolism. This device kept coming off of my feet, and I discarded it.
A hybrid stock/slipper was also given to me to be worn. It kept coming up, and it was not much fun reaching down to my foot to put it back on.
The intravenous device which was being used had a loud, shrill alarm system which would go off when the device detected increased resistance to flow, or when the volume of fluid remaining became low. Somehow, the nurses did not pay attention to this alarm, and frequently I would have to use the nurse call button. I would then place the microphone of the call button up to the alarm to let them know that the alarm was going off.
I was in room 322 of Clovis Community Hospital. I have to give kudos to the nursing staff and all of those people who helped take care of me during the two days that I spent in room 322 following surgery. I rarely had to wait any significant amount of time after calling the nurses. They went out of my way to be helpful and to answer all of my concerns. Whenever complaints I expressed above, I do not have any complaint about the nursing care that I was given.
Late Friday morning, I leave the hospital. I have to say that there is no place like home. However, I developed an unexpected complication of back spasms. These are relieved quite well with a heating pad which I alternate from my left upper abdomen to my lower back. I continue to be successful passing gas, but have not had a significant bowel movement.
Two quiet days have passed. My abdominal pain has substantially decreased. However there is still a small amount of residual discomfort in the left upper abdomen particularly on coughing. I have returned to a relatively light diet.
I continue to use the breathing device. I now quite easily get the marker up to the 2500 level.
Today, we were visited by our friends, Ray and Andrea Schwartz. Our dog, Rocky was visited by their dog, Joey, a full size poodle. They have been very encouraging to me. Many years ago, Andrea was diagnosed with breast cancer and was given only a short period of time to live. She is a shining example of what can happen when you stand up and fight your disease. I plan to emulate her example.

A Brief Update

2011-03-25T21:37:00.000-07:00

I came home from the hospital today. My laparoscopic surgery was done Wednesday morning. I came home today, Friday morning after only about 48 hours in the hospital. The small bowel mass was removed. I await the pathology report. The posterior mediastinal mass is still there, and could possibly be removed at a later date. I am feeling fairly well, but still have some gas pains. I am off all pain medications.
I thank all those who have wished me well. I will post a detailed narrative of the events as I remember them, hopefully this weekend.

Surgery Wednesday 10:00 AM

2011-03-21T18:15:00.000-07:00

The plan is to remove my small bowel tumor using the laparoscope. If successful, the morbidity of the operation should be minimal. Dr. Felix looked at my CT scan with me and thinks he may also be able to get the posterior mediastinal mass out.
Tomorrow, I see Dr Flam in the morning and will get labs done. EKG wednesday morning before the surgery. Colon prep tomorrow with Magnesium Citrate. I am not looking forward to that.
I will post again after my surgery, probably next week-end.

The Emotional Roller Coaster

2011-03-17T15:09:00.000-07:00

Today, I went with Judy to Sierra Imaging in Fresno for a follow-up CT scan. On my last study, there was an unexpected new mass in my posterior mediastinum that was treated with a low dose of radiation in the hopes that this would stimulate my immune system to control the disease. I have been looking well and feeling quite well although I have commented in the past about some indigestion.
My CT scan was completed and I went to visit the Radiologist, Glen Hananouchi, a former partner of mine, to review the results, with Judy there as well. I realize this is always a difficult spot to put him in but I have been in this position many times. We reviewed the images and saw the mediastinal mass was smaller. There were no lung or liver metastases. I left the room elated and we sat in the waiting room as I had requested a CD of the images for my records.
Shortly Glen came to get me, appearing crestfallen and I knew the news was bad. There was a totally unexpected new finding. A new lesion had appeared in my small bowel, surrounding the lumen and thickening the wall, measuring about six centimeters in length and about three and a hanf centimeters in diameter. Well, at least the feelings of indigestion were not psychosomatic. There is no doubt that this is a real abnormality and I can't imagine it is anything other than a recurrence of Merkel Cell Carcinoma. This reminds me of the carnival game "Whack-a-Mole" where as soon as you whack it, it reappears elsewhere.
Here are some images from my CT scan. The mass is in the left upper abdomen. The magnigied view shows the bowel lumen (area through which digesting food passes) in white with the wall around it.

Those images are in the coronal plane. Below are axial images.

Again, the small image shows the tumor surrounding the bowel.

So, what next. I await a callback from Dr Nghiem. I have spoken briefly with Dr Flam. I have also spoken with Dr Ed Felix, a good friend, who is well known in the field of laparoscopic surgery and who has trained as an oncologic surgeon. I wii see him on Monday. I think he can remove this tumor using laparoscopic technique, with relatively little morbidity. Hopefully this will happen in the next week or so before I develop a small bowel obstruction. After that, who knows? Chemotherapy? Watch and wait for the next mole to pop up? It may be a while before I get some answers.
I would not have been surprised to see liver or lung metastases on this examination. In fact, I was almost expecting liver metastases to account for the indigestion. This was a shocker, and speaks to the variability of this disease.
Well, I still will not give up. If the bowel lesion is removed and is confined to the bowel, and the mediastinal lesion is not growing, maybe we can get rid of every trace of this bully for good.

Returning From Hawaii Cruise

2011-03-15T16:18:00.000-07:00

Tomorrow, we leave the Golden Princess after a wonderful two week cruise to Hawaii.
It will be back to real life with a CT scan on Thursday and an appointment with Dr. Flam the following Tuesday. Once again, I am cautiously optimistic that there will be no new disease, but if there is, I am prepared to face whatever treatments will be required, likely Chemotherapy.
Wish me luck. I will post the results when I have them.

Review of my Merkel Journey to Date

2011-02-22T11:13:00.000-08:00

May 6, 2010, about three months before my 70th birthday, I discover a mass in my left cheek.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/i-discover-mass-in-my-face.html
I have a CT scan of my face and neck, links to images below.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/ct-scan-images.html
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/parotid-lesion.html

http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/questionably-enlarged-lymph-node.html

May 13 2010 I have a fine needle biopsy, false negative report. This delays surgery until June 3 2010, our 48th anniversary.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/i-have-surgery.html

June 7, 2010, I get the bad news.
Why the false negative, you may ask. I think it was a combination of factors. The tissue sample was wrongly sent as a parotid gland biopsy when in fact it was from a lymph node. It was read by a pathologist who had probably never seen a Merkel Cell carcinoma on a skinny needle biopsy. I have not asked for a review of the slides in this case, as it is water under the bridge. However, if the correct diagnosis was made, it might have resulted in sparing me the surgery of June 3.
A search for a primary site fails. Radical surgery is planned, possibly with chemotherapy and then radiation.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/merkel-work-up.html

July 24,2010 My son Gary finds the Merkel support group on the internet, and I am in contact with Dr Nghiem. I cancel surgery and plan on radiation treatment alone.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/gary-finds-mcc-group-and-dr-nghiem.html

June 23, 2010. I visit Dr Nghiem in Seattle.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/07/my-visit-with-dr-nghiem.html

Aug 3, 2010 Radiation treatment continues. Here is a sample post.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/08/update-after-20-of-30-radiation.html

Aug 17, 2010. One day before my 70th birthday, I complete radiation treatments.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/08/i-know-what-michael-douglas-has-coming.html

My circulating Merkel count was ZERO and I am optimistic that the disease has been vanquished. Life returns more or less to normal and I continue to heal from the radiation treatments. We plan a cruise to hawaii for December, 2010, but on November 24, 2010, I have a follow-up PET/CT. Disaster! There is a large mass in my chest near my heart and esophagus, but not in the lung.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/11/bad-news-on-my-petct.html

Here are images from the scans.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2010/12/petct-images-annotated-musings.html

I visit Dr Nghiem again. My circulating Merkel cell count has risen to 13 cells per 10 cc of blood.
He proposes a unique treatment. A small dose of radiation to the tumor, about 10% of the usual treatment, all in one session. The object is to unmask the antigens associated with this tumor and allow my immune system to combat the tumor.
I have the treatment. My Merkel Cell count is down to 1.
http://docshu-mybattlewithmerkelcellcancer.blogspot.com/2011/01/there-is-suicide-bomber-living-in-my.html

We took a cruise to Mexico. My count dropped to ZERO again. We now plan a cruise to Hawaii, the one we had to cancel. This time I have learned my lesson. I will have a follow-up CT scan AFTER we get back from the cruise.
So, how do things stand now?
My weight is stable. I feel OK but not great. I have been having some vague discomfort in the abdomen, not enough to slow me down, but enough to make me worry. Of course with this disease, you have to worry. My best guess as to my prognosis is 20% chance of surviving 2 years from some date. I don't know if it is measured from the first appearance of symptoms, first diagnosis or the day I discovered I am stage IV. The statistics for stage IV are that. However if you make it through 2 years, the chance of long term survival is good.
I continue to work, although my schedule is cut back. I continue to play bridge and I continue to enjoy life.
For those afflicted with this disease, feel free to contact me through this blog or email me at dave@shuster.com

Good News. The Circulating Merkel Cell Count dropped to ZERO

2011-02-04T11:30:00.000-08:00

It can't go lower than 0. This can't be bad news. I can't let myself be too excited about this because the count was 0 before my initial radiation treatment and I still developed a distant recurrence, but this is the best possible result.
I had a chest x-ray and it doesn't show any large mass, although the location is such that it would take some growth from the previous to be visible.
There are no lung metastases visible. In fact my chest x-ray looks like that of a 40 year old.
We had a very nice visit with my brother Jon last week-end and even got in a bridge game before he left.
My sister Ellie will visit from Edmonton next Monday, and our middle son Brian will visit the following week.

Comparing the CT image to the chest X-ray suggests a barely visible edge of the mass. This is a very questionable abnormality.
I would like to thank everyone for their kind words of encouragement and prayers. I am not a religious person but every little bit helps.

Is This What it is Like to be on Death Row?

2011-01-28T11:07:00.000-08:00

One of my colleagues working at Kaiser Permanente visited with me yesterday. I described to her and the feeling that in a way, my situation is similar to that of somebody on death row. Merkel cell cancer is the executioner. Dr Nghiem is my defense attorney. He is appealing my sentence to higher courts. Every time we have an interaction, he gives me hope that in some way, some judge will find merit in my appeal and commute the sentence. The only difference is that a death row inmate is given a definite time for his execution, and an attempt is made to avoid all discomfort as the sentence is carried out. I do not have a definite date from my demise, and I have no assurances that should my appeals be denied, I will have a painless and comfortable death.
I have in my possession the materials needed for my next blood draw for circulating Merkel cells. By the end of next week, I hope to have the result. If the cell count has risen, I expect that I will be undergoing chemotherapy designed to treat small cell carcinoma. That will be preceded by some form of imaging study. If the cell count has not risen, I can wait another month.
I have been feeling vaguely unwell. There's nothing that I can really put my finger on. There are some minor abdominal cramps and lower chest pains. My appetite is not good. This may be attributed to the lack of improvement in my sense of taste and continued dry mouth. My weight has stabilized around 160 pounds, almost 20 pounds less than what might average weight used to be prior to the diagnosis. Perhaps this is all psychological, as a result of my not looking forward to any future treatments.
I have been thinking that this posterior mediastinal mass should be visible on plain chest x-rays and I'm considering getting a plain chest x-ray for my own edification as to whether this is true and then to be able to follow the size of the mass with a very simple test. Of course this would not document any new masses involving lymph nodes in the upper abdomen or in the mediastinum.
In my discussion with Dr. Ngheim regarding the planning of my experimental treatment, there is one thing which he said that stuck in my mind. He stated that there are no long-term survivors of Merkel cell carcinoma after chemotherapy. This is because the chemotherapy destroys the immune system which is the major defense against the spread of Merkel's. I think that his intention here was to dissuade me from having chemotherapy and to convince me to have this treatment. Reading posts to the Merkel cell message board, I see that there are several anecdotal cases of substantial survival of patients who have had what I would consider to be more advanced Merkel cell cancer than I think that I have. Because of this, if the disease is progressing, I will undergo the chemotherapy.
It is my hope that with this plan, I will not be trading the last days that I have of relative comfort for days of misery. Many patients are very sick following chemotherapy. I just read a post documenting rapid demise from infection during chemotherapy. On the other hand, when I was undergoing radiation treatment, I met a man who was having radiation treatment in the morning and chemotherapy in the afternoon, and he did not complain of significant symptoms.
In the meantime, I continue to work three afternoons a week. I plan to continue to play bridge twice a week. I look forward to a visit from my brother, Dr Jon Shuster, who is a professor of mathematical statistics at the University of Florida.
I'm also looking forward to a visit from my son Brian, who will be here just before Valentine's Day. I'm hoping to be able to travel to Montréal to visit my mother, perhaps at the end of March, depending on whether I will be allowed to travel assuming that I am undergoing chemotherapy, or hopefully, not needing chemotherapy before then.
In keeping with prior posts, I'm going to conclude this blog with a satirical song that I wrote many years ago, but I think that much of it is as true today as it was then.

MASTER OF THE HMO

To the tune of

Master of the House

From

Les Miserables

Sung by the HMO President

Welcome, My friend

Sit yourself down

We are the best

Provider in town

As for the rest

They don’t compare

They are obsessed

With refusing care

Seldom do you see

Honest men like me

Working in the health

Insurance industry

Master of the plan

Ads are on TV

We show those smiling doctors

But what you don’t see

Show an MRI

Make it look high tech

You can’t even get one

If you break your neck

Glad to do a friend a favor

Doesn't cost us to be nice

When you sign up you will find out

Everything has got a little price!

Master of the house

Keeper of the gate

Ready to deny 'em

Or to make ‘em wait.

Use generic drugs

See your primary care

If you use the ER

You will be the payer

Everybody needs insurance

Everybody has to spend

If you get diseases

Jesus!

We won't help you in the end!

Master of the plan

Tumor to remove

Never get it paid for

‘less its pre-approved

Get a pre-op chest

Help you to decide

If it turns out normal

Payment is denied

Everybody's paranoiac

Everybody's on his own

You all signed releases

Jesus! Won't I skin you to the bone!

[To another new customer...]

Enter old man

Pay your co-pay

Doctor will see you

Maybe some day.

Charges are low

They won’t go higher

Unless you get sick

Coverage won’t expire

Join our HMO

Get rid of Medicare

And nothing's overlooked

Till you’re on welfare

Care beyond compare

Care you can’t resist

See a nurse practitioner

Not a specialist

Kidneys, they don’t know

Liver what is that

Filling up their charts

With this and that

Interns are more than welcome

Residents we’ll keep occupied

Reasonable charges

Plus some little extras on the side!

If you have chest pain

The ER you must disdain

If its not a heart attack you'll end up payin'

Here a little slice

There a little chop

You see a nurse practitioner and not a doc

When it comes to fixing prices

There are a lot of tricks he knows

How it all increases

All those bits and pieces

Jesus! It's amazing how it grows!

Master of the Plan

Tries to catch your eye

Never wants a Healthy one

To pass him by

Service to the poor

Equal to the rich

Don’t need a Dermatologist

To cure your itch!

Everybody's capitated

We make it all a closed shop

Payment never increases

Jesus!

We just take ours off the top.!

Master of the plan

Says precertify

Call the number just to hear

Deny, deny

Never operate.

Don't investigate

Don't care if we find your cancer much too late

CoPay for pharmacy

Don’t Pay for MRI

They all get diseases

Jesus, its much cheaper

If they die

Don’t care who he fleeces,

his nephews and his nieces

Pack up their valises

Never hear their sneezes

They eat too many fatty cheeses

Meats and all those greases

Jesus it saves us money if they die.

From the Sapphire Princess

2011-01-14T12:57:00.000-08:00

This post was written on the last day of our 10 day cruise to Mexico. We have had a wonderful time. We’re going to do this again hopefully. Just before we left for this cruise, we learned that we will receive a cash refund from the insurance for the cruise that we had to cancel.

This cruise has been a great distraction. Most of the time, I have been able to put my condition on the back burner and not think about it. We met some very nice people who were sitting at our table and introduced us to a new card game which they call “nines”. It is different from the game of nines that we used to play. We have been playing this game with two decks of cards and six players. Judy and I have also played several sessions of bridge. In one session, we managed a 78% game, which, perhaps, speaks more to the quality of the opposition than to the quality of our game.

There is food everywhere, but I have found that most of the time I have not had very much of an appetite. I am attributing this to the continued dryness in my mouth and the continued loss of much of my sense of taste, although I am able to taste foods to some extent. When I begin eating, the food taste pretty good, but it seems like my taste buds get tired, and the food loses its taste.

The moment of truth will come at the end of this month. I’ll have another blood test for circulating Merkel cells. If the cell count stays the same or goes to zero, I will have follow-up imaging at the end of March. If the cell count goes up, I will have follow-up imaging at the beginning of February.

I was thinking yesterday about a very ironic event which happened not too long ago. Right after the passage of the health care legislation, I was trying to get a sandwich for lunch at the local subway shop, and I was accosted by a roving reporter for a local television station. They were trying to gather comments about the new tax on tanning booths. They asked my opinion and I said that they should raise the tax to help pay for healthcare for the people who ended up getting cancer from the tanning booths. The segment was aired on local television. The ironic thing is that it was not long after that that I was diagnosed with a form of skin cancer that is associated with sun and radiation exposure.

This has been a very great escape from the world. Next week, it’s back to reality, with two doctors appointments, one dentist appointment, and one appointment with an attorney to complete the details of our wills and medical directives. I also plan to work 3 half days. I also plan to play bridge two afternoons next week. It will be busy.

There is a Suicide Bomber Living in my Body

2011-01-01T11:42:00.000-08:00

The suicide bomber living in my body is Merkel cell carcinoma. It lurks in hidden reaches and plans its terrorist attacks, with the potential that if it is successful, it will result in its own demise as well as mine. Just like the battle against terrorists, we have to use all the weapons at our disposal to destroy every single Merkel cell. To that end, I have undergone a somewhat unconventional treatment. When my Merkel cell carcinoma recurred as a large posterior mediastinal mass, instead of the suggested chemotherapy followed by a large dose of radiation, I have had only a small dose of radiation directly to the recurrent tumor in the hope that this will trigger an immune response. Prior to this treatment, my circulating Merkel cell count was measured at 13 cells per 10 mL of blood. I have just received a very encouraging result. After 2 1/2 weeks, the count has decreased to only one cell for every 10 mL of blood. At the end of January, I will have a follow-up assay, and perhaps my body will have successfully obliterated the terrorists.
I am feeling well, without any symptoms of the mediastinal mass. I have had no side effects from the radiation treatment. The only complaint I have is a dry mouth, and reduced sense of taste, all resulting from the original surgery and radiation.
Over Thanksgiving, we had a wonderful visit from all of our children. I have posted a collection of photos on Picasa. The link is below, and I don't know is how to place it so that you can click it. If it does not work, you'll have to copy and paste it into the browser window. I think I fixed it. You can click on "Here is the link" below.
I am sure that this collection of photos will bore many people, but for those interested, the photos are of my oldest son Gary, his wife Dana, and their three children, Eva, Sara and Bel, my middle son Brian, and my youngest son Mike with his wife Leanna, and their two children Sammi and Eli.
Here is the link
http://picasaweb.google.com/radocshu/Thanksgiving2010#5557290779026217122

We will be leaving on Wednesday for a cruise to the Mexican Riviera. It will be a 10 day cruise. We are taking this instead of the Hawaiian cruise which we had to give up as a result of my needing to have more radiation treatment.

You may notice that there are ads placed in this blog. Surprisingly enough, there have been over 3000 page views since I have begun posting. I have decided to monetize the blog. I think that if you view the ads, money comes to me. Any such money will be donated for Merkel cell research to the University of Washington. I will personally match any money donated.

My dear friend, Lenny Clayman, frequently suggested that Judy and I join him and his wife Bluma on exotic vacations, most of which we have not done. In the past few years, he urged us to do this by saying “We don't have that many good years left.” I may not have that many good years left, But I plan to live them to the fullest.

Thirteen. What Does it Mean?

2010-12-19T10:43:00.000-08:00

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.

Hope for the Best, Plan for the Worst

2010-12-08T11:26:00.000-08:00

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.