Press On, Regardless
(Living with Esophageal Cancer)
    This story begins with the diagnosis
    on Friday the 13th of June 2003 and
    continues almost weekly until the
     the latest entry. So far, I'm a 
     2 1/2 year survivor, with the help of
     my Life-Saving Wife, Anna.

Scroll down to go back in time

April 20, 2006

I decided to cancel the cataract sugery because I have been dealing with headaches that don't respond to tylenol. I had an MRI and it came back OK so I have been on oxygen 24/7 for a few days and that seems to help. The past two weeks I've noticed some weariness that is normal as the disease progresses. So, it's been reading and TV with Anna to pass the time. Anna keeps us stocked with the latest movies from Blockbuster .
Tom Jr is coming from Tampa for my 77th on May 1.

March 15, 2006

Since most of my time is spent reading and watching TV, I've decided the growing cataract in my right eye should be removed. Sugery is scheduled for April 12. Everything else is going well. The weather is permitting us almost daily strolls around the lake. I've been advised that exercise is important to maintaining body strength. The only impediment is the neuropathy pain and numbness in my feet that makes my gait somewhat unsteady. Like a St. Patrick's Day stagger, but not that bad. BTW, Happy St. Patrick's Day to all!




February 11, 2006

I'm glad to report that my decision to rely on Home Hospice Care was a great decision.
I'm still feeling fine. No pain, eating three times a day, maintaining my same 200 pounds while reading good books and enjoying a new season of TV on our new, 33-inch LCD HD TV.  Anna and I walk around the lake almost every day and lately the weather has been beautiful.
The Hospice folks ( a nurse and a social service worker) drop by once week to chat and answer our questions. They are great and have provided lots of good information. 
Hospice does not always mean you are near the end of the line. I found that there are many people like me who are in good condition and have been around for years. That's what I plan to do.
Cheers and Happy new Year. Tom and Anna
 
 
 

December 15, 2005

I had the peg re-inserted and I'm back on Ensure Plus. I can still swallow but it's now limited to water and juices. The tumor is apparently leaking small amount of blood and a low red blood count required a few transfusions this week.
I've decided to forego further hospital care or more transfusions. I'm feeling fine but the realities of the situation persuaded me to take advantage of Hospice Home Care. Nurses and Doctors come by the house and services will be available if the blood loss makes me too weak to get around. It's a tough decision but there comes a time to face the inevitable.
Thanks again for your prayers and great support.
Tom and Kathi are visiting and it's fun to remember the good times.
Cheers, Tom
 

December 1, 2005

It's be coming apparent that Dr. Boyce's efforts are limited and he can only keep my   esophagus open to permit a liquid diet and I won't be eating pasta, cheeseburgers and BBQ any more. I can live with that because I enjoy Campbell's new Select soups that are delicious and easy to swallow. The Roasted Red Pepper/Black Bean and the Portobello Mushroom are my favs. That, plus 4 bottles of Ensure-Plus give me all the calories I need to keep up my weight.
As a safety net I'm having the PEG feeding tube re-installed. The first one was put in back in June, 2003 and I used it for about 4 months while the first round of chemo was shrinking the tumor. I enjoyed normal swallowing for about 15 months; that was a real treat.
This will be the status-quo as long as the cancer remains isolated in the esophagus and does not spread to the liver or lungs. So far, so good.
 
 

November 8, 2005

More progress Monday in the trimming process. Dr. Boyce says the tumor is still growing slowly and he thinks he'll be able to stay ahead, and keep me swallowing. It's a slow process. He has to be careful that he burns off only the top of the tumor and does not puncture the esophagus wall, which is a very thin membrane. He will trim again about 2 weeks. 
 

October 29, 2005

We're back home with power, phone, tv and internet access. Only minor damage from Wilma which brought 120 MPH winds.
The swelling from Wednesday's laser surgery has subsided and I'm swallowing a bit better.
Monday I should now when the next procedure will be scheduled.
 

October 25, 2005

UPDATE FROM TAMPA

Hurricane Wilma forced the postponement of my Monday laser surgery. It's now scheduled for Friday, 10/28. Meantime, we're biding our time at the Fairfield Inn. We saw "North Country" yesterday. Great movie. The storm left Stuart, FL without power or phones for a while so we're missing the joy of throwing out food from the fridge and living with no TV or internet.
Not bad at all.
 

October 13, 2005

Yesterday's visit with Dr. Boyce produced more information about the tumor. It changed shape somewhat and is pushing into my esophagus from one side. The diameter of the tube is up to 14 mm, which is very good. But the shape of the tumor makes swallowing food a
problem, so I'm back to a liquid diet until the next session. Hopefully, October 24. The doc described the tumor by holding up his knuckle and said that's what it looked like.
He also told is about a new anesthesia called "MAC" that knocks the patient out for 20 minutes. Then you wake up with no lingering side effects or drowsyness. During the 20 minutes he will be able to do much more laser work on the tumor to  allow me to eat real food again. 
 

October 6,2005

Back home today, swallowing a bit better after yesterday's dilation at Moffitt. I go back for another procedure in 2 weeks.  Dr. Boyce told us he found the diameter had reduced to about 6 mm and he managed to boost it to 12 mm. In the past few weeks I've noticed difficulty swallowing unless I chewed food thoroughly and washed it down with a bit of water. Dr. Boyce mentioned that a stent could be installed in my esophagus to keep the tube open. That's an option to be considered. He could still perform the APC procedure as needed. In the meantime I'm still feeling fine, eating carefully, but well.
 

September,15 2005

Yesterday's APC procedure went fine, as expected. Dr. Boyce has scheduled a follow-up combination APC and dilation October 5. I've noticed  a slight narrowing of the esophagus in recent weeks so I figured another dilation would help my swallowing. Monday I'll have a barium swallow. That's an x-ray of my esophagus taken in multiple frames while I swallow
about a cup of barium, which lights up in the x-ray to show the interior lining of the esaphogeal tube. We will send it to Dr. Boyce so he can see where to work his magic.

We had dinner Tuesday night with Tom, Teresa, Travis and Abbie at the Outback Steakhouse. They have added some new menu items and, naturally, they are delicious.
The Tampa Dunns and all fine. Tom's business if doing well and will benefit from his sales in Mississippi and New Orleans. He is donationing a portionof those sales to the Red Cross Katrina Relief Fund. What a guy! 
Thanks for your interest in our journey. 
Now, if the price of gas would just come down.....

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Immunotherapy

August 22, 2005

Time Magazine, in it's most recent update on cancer research, revealed a new approach to fighting cancer. It's called Immunotherapy. It's an alternative to chemo, surgery, or radiation that acknowledges the current fact that there's no cure for cancer of the esophagus. 

Actually, this is the approach I chose last Spring when I abandoned further chemotherapy. 
It became apparent that further chemo and it's attendant neuropathy would put me in a wheelchair, and that was not part of my plan. (Jimmy Buffett stated my plan in his lyric,
"Id rather die while Im living than live while Im dead".)

I quit chemo after Dr. William Dunwoodie said, "You can take chemo forever and it will always come back." Anna and I had sat with him for three hours last March looking for some new, state-of-the-art treatment. There was none, we were told.

But, I was feeling good and getting better and the scans had shown no spread of the cancer beyond the small tumor in my esophagus, I had read that keeping the immune system strong can prevent cancer from spreading, so this is what I would try.

Since then I've been doing my best to do just that. Lots of fresh fruit and vegetables and the supplemtents in mentioned in April.  So far, it's working and I feel wonderful, enjoying each day as the gift it is for everyone.

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Managing Cancer

July 6, 2005

This week's trip to Tampa produced the same, satisfactory results. Dr Boyce performed his routine endoscopy and found the tumor is still growing, but slowy enough for him to keep trimming it with the electric charge (Laser Lite) he's been using successfully since last winter.  I have the usual tender throat that will clear up by tomorrow. 
Living with cancer is an option I never envisioned.
Normally we expect a cure, continued chemotherapy or radiation, or failure and the end of life.
For the present I am managing to live as if I had no illness at all.
I'm swallowing normally, I suffer no pain and Anna and I are enjoying life as if cancer had never entered our lives.
I consider myself truly blessed and we thank you all for your positive energy and prayers on my behalf.

------------------------------

Good News 

May 6, 2005

Drove to Tampa Tuesday for what has become my bi-monthly endoscopy. First we went to Safety Harbor  near Clearwater to have a beer with our old friend Capt. Jack Kirk who lived on his sloop on our dock in Connecticut when we made our home aboard Harmony, a 46-foot Chris Craft Aquahome, in the late 1970s.
Tuesday evening we had dinner at the Bonefish Grill in Tampa with Tom Jr., Teresa, Abbie and Travis.
The next morning we were off to Moffitt Cancer Center where Dr. Boyce sent his camera down to look at the tumor in my esophagus. Apparently the immune system booster I've been taking is doing something good.
After the procedure Dr. Boyce told us the tumor had grown about 10 percent and the small, new one he'd discovered in March had not changed at all. Using his Argon Laser he trimmed about 3 mm off the top of the tumor and looked around but found nothing new. I expected the tumor had grown more than 10% (although I have had no trouble swallowing). 
I have an appointment in July for the next session. 
We are flying off to Rome Sunday, May 15 where we'll tool around Tuscany and Umbria for 10 days. Anna met some neighbors who just returned and told her the food and wine are delicious and it's getting warmer with the temps now in the upper 60s to about 75F. This will be fun. 
Salute, and thanks for stopping by.

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April 9,2005
Still feeling wonderful

It's now been more than a month since Dr. Boyce explored my esophagus.I continue to eat anything I desire and am easily swallowing capsule medications.To boost my immune system I am taking 100 mg C-Q-10 coenzyme plus 2000 mg Beta Glucan (see:http//www.aboutbetaglucan.com) The only complaint is the continued pain and discomfort from the peripheral neuropathy in my feet but this has been mollified recently with Neurotin prescribed by Dr. Abesada at my request. I could have been using this for relief for months but I only learned of its effectiveness last month and started some research.It does help with the pain in my toes and the numbness in the soles of my feet.My next appointment at Moffitt with Dr. Boyce is on May 11th. 
A week later we plan to fly to Rome and drive around Tuscany and Umbria for a week.
Life is good!
 

March 2, 2005
First Argon Treatment

Dr. Boyce at Moffitt Cancer Center in Tampa performed a routine endoscopy this morning and used the Argon Laser to destroy a small amount of superficial tumor tissue he found in my esophagus. It was painless and I came away only with a slight sore throat but he says it will be gone tomorrow. He told me he can repeat the procedure indefinitely and keep the tumor under control and my swallowing normal. The cancer cells are still in my body and, hopefully, my immune system will fight to keep the malignancy from spreading to other organs. The latest scans show it has NOT spread to the lymph nodes or elsewhere and the evidence of the disease is confined to my esophagus. 
Life is good, I feel great, my hair has grown back black 
and wavy and it's one day at a time. So far, so good.

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February 3, 2005
New, post chemo therapy

Since deciding to end the debilitating and unsure infusions of chemotherapy, I am embarked on a new path. 
The Gastro-Doctor at Moffitt Cancer Center has agreed to attack the cancer with Argon Plasma Coagulation, a laser-lite approach that blasts the tumor on the surface to prevent it from growing inside the esophagus. The initial treatment is set for March 2.      I will rely on a nutritional approach (healthy diet, plus CoQ-10, and Folic Acid * ) to keep my immune system strong and to discourage the cancer from spreading to my lungs or other vital organs. This will be coupled with dilations to allow me to swallow and , hopefully, avoid the re-installation of the feeding tube.
It's an unusual approach, but, if successful it will keep me around while maintaining a good quality of life.
* Some studies suggest that folic acid can help prevent cancers of the lung, cervix, rectum, and colon. Just how the body might use the vitamin to help stave off cancer is unclear, but it is theorized that folic acid keeps cells from mutating and proliferating. More study is needed in this area.
 
 

==========================

Goodbye Chemo

January 22, 2005

We spent 2 hours Wednesday conferring with the head guy at the Moffitt Gastro Clinic. He told us again what we knew, that this cancer is not curable and surgery is out of the question because of the location on the tumor. So the only option is morechermotherapy. He came up with a new combo of two drugs I might try but unfortunately they have not been proven effective for my type of tumor and may not help. The only thing they will do is exacerbate the neuropathy (the numbness and pain) in my feet and that will making standing or walking impossible.

So, I made the big decision. No more chemo. I feel fine. I can walk and stand and cook and we can travel as we do now. I prefer to enjoy the rest of life with Anna, rather than continue therapy which may or may not extend my life a few months but will surely leave me permanently disabled. When I asked the Moffitt doc what would happen if I stopped further chemo, he shrugged and said he didn't have a clue. I could last months or years with or without further chemo. It's just a "crap-shoot". Those were the exact words used by the first doctor I consulted 18 months ago, so I guess I'm lucky to be here, feeling as good as I do now. 

As Jimmy Buffett wrote "I want to die while I'm living, not live when I'm dead".
The quality of life is much more important than the quantity.
 
 
 

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January 6, 2004
More Chemotherapy needed
My latest scans and exams show the need for more chemo to battle the recurring cancer in my esophagus. We will travel to Tampa to consult with a specialist at Moffitt Cancer Center this month. Moffitt is one of the 3 top cancer centers in the US and they have the latest and best information on medications .
I'm feeling fine and eating everything in sight.
Meanwhile my hair is growing back and Anna keeps introducing me as George Clooney or Harrison Ford. I must look pretty good.
Happy New Year to all !

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December 21, 2004
Just returned from 12-day Caribbean Cruise. It was fun but we're glad to be back home where Tom can cook. We visited the Dominican Rep. where we were married in 1974, and St. Barth's, where we vacationed for 10 years (1975-85). It used to be a quaint island but is now wall to wall yuppies and long lines of traffic. Too bad. It was great before is was "discovered" . The beach-front cottage we rented for $300 a week is now a condo that goes for $1000 a night. 
Tom goes for scans next week to check on how the chemo did.
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October 8, 2004
I am now past the Fifth and last IV infusion of a second chemotherapy (Carboplatin/Taxol) to deal with the small recurrance of cancer cells that showed up in June. See Below. My side effects are uncomfortable, but tolerated with each infusion. (see "Taxol Tips on the mail page). Just some aches and pains that will go away in an few days. I'll have new scans in a few months to see where I'm at.

Our trip to Cleveland to visit Kathi, Chris and the girls was wonderful. They love their new Ohio home. We drove to Niagara Falls for lunch and Anna won $200 on the slots. Have a great August!
======
(July 2004)
It's amazing !
My GI doctor went down into my esophagus today (July 22) prepared to do an APC to burn out the tiny malignant cells he spotted four weeks ago...BUT THEY ARE GONE !
The chemotherapy I started July 8th must have destroyed them, or or least made them invisible to the keen eye of Dr. Boyce who saw the two suspicious looking lesions on June 21st. I was awake during the procedure, just a bit groggy but a heard him talking to his surgical nurse and another doctor he called it in look at the computer screen which showed the inside of the esphophagus in great detail. I will continue the chemo for a few more weeks. We've postponed European travel until May,05. We need a new roof because of damage inflicted by Hurricanes Frances and Jeanne , so we need to save up some $$.

Thanks, again for your prayers and positive thoughts.
 
 

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