Tuesday, January 31, 2012

The Bad News Doesn't Stop

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.

Monday, January 30, 2012

Brief Update I am home

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, January 28, 2012

Saturday Afternoon At St. Agnes Medical Center

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.

Friday, January 27, 2012

I am Going to the Hospital Now

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

Pseudo-Achalasia: A New Diagnosis

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.

Wednesday, January 25, 2012

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

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.

Monday, January 23, 2012

Steps in the Right Direction

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, January 22, 2012

Sunday Morning Coming Down. Two Days After Dilatation #2

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

Friday, January 20, 2012

Only a Little Improvement

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

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.

Wednesday, January 18, 2012

Another Esophageal Dilatation Scheduled

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.

Monday, January 16, 2012

Esophageal Dilatation: My Experience

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.

Friday, January 13, 2012

Post Esophagoscopy Uppdate

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

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.

Wednesday, January 11, 2012

Another Complication of Radiation Treatment

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.

Tuesday, January 3, 2012

First Update for 2012. Google Ads Pay Out!

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.