(Living with Esophageal Cancer)
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.
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 .
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.
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.
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.
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.
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.
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
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.
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
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.
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.
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.
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.
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.
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.
March 2, 2005
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.
February 3, 2005
Since deciding to end the
debilitating and unsure infusions of chemotherapy, I am embarked on a new
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".
December 21, 2004
October 8, 2004
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
Thanks, again for your prayers and positive