Cancer Survivors Network

Hello Lee:

Long time -- no hear--Guess "no news" was good news after all.

So tomorrow you will know the exact degree of effectiveness the chemo and radiation has had on John's cancer. Obviously if he is eating better, something has decreased in size. Dr. Luketich likes to schedule the surgery 3 weeks or so out from the last of the chemo treatments. He doesn't like to wait too long. He explained that radiation causes scarring and that the operation is made more difficult if they have to deal with a buildup of scar tissue.

Bouts with fatigue is a leftover from John's chemo for sure. Barring no complications, we're looking forward to another successful operation for John. But I still do not recall your telling us the exact stage that the doctor's agreed upon. We all think that the operation is the "icing on the cake, so to speak". The pre-op chemo is the most dreaded. I escaped much of the suffering that others have had to endure. The chemo works differently on each of us. It also depends on the type. I can't imagine the poor souls that were so sensitive to cold that they had to wear gloves and could hardly bear to open the refrigerator. I know at the time each person despairs of life when they are grappling with the often awful painful side effects of this pre-op treatment. Yet is it the way to go, I am convinced.

Cancerous cells multiply rapidly. Often there are misdiagnoses and surgeons operate only to find the cancer far more extensive than they first thought. So all that time cells were multiplying rapidly. That's the insidious part. So my advice is always opt for the treatments first. The stage of the cancer will dictate the measure of chemo and/or radiation required. That was my biggest decision to make. I did have a choice. I now know that it was the right choice, yet at the time I really didn't even know what Esophageal Cancer was all about.

Now, Lee, you haven't said anything about your own bout with the tumor on your face. You had some surgery. I believe you said, it would take quite a long time for your facial contour to return to normal. Hope you're okay and that no problems went along with that.

Lee, your friend at Fox Chase may not be aware that she has thought of something that has "already been on the market for years". I had one when I was operated on 7 years ago in May 2003 and it wasn't new then. I have a picture of the home health nurse instructing me on how to use it. It was a small black case of sorts with the food packet and tubes inside. So you don't have to burst her balloon, but UPMC furnished me with one the day I was discharged to Family House Shadyside. If one goes back through my postings, they will find my mentioning it. It is portable and allows the patient to travel and not be confined to home. So if, for any reason John doesn't find this friend's device suitable, there are portable feeding packs that John can choose from. Mobility is a plus, although I was only on my feeding tube for 3 weeks. Some people aren't too far along in their recovery, others feel really good in 3 weeks, though not yet fully healed of course. It all depends on the individual patient and their state of health going into the operation.

At first John will be on the intravenous feeding for a longer period of time each day. I was able to start to eat a couple of tablespoonsful of Cream of Wheat as soon as I was discharged. By the end of the 3rd week, I had weaned myself off the feeding tube . As John's intake capacity increases, the feeding tube will be used less and less. I have pictures of me hooked up to the IV pole at the first. I also have a close-up of the area where the tube is inserted. It is below the waist line. A thin rubbery bandage covers the whole area (approx. 4 X 4 in. square) when device is not in use. It is not bulky underneath one's clothing.

John will have absolutely no problems if he wants to just unhook the tube, leave the fanny pack at home too, and go out on the town. That is, if you're only going out for the evening. Now if you're going to Europe, then he will need to carry his "doggie bag"! I also have a picture of the home health nurse holding the portable feeding device and instructing us on how to use it. Since I had a portable feeding pack as "standard issue", I just assumed that all hospitals furnished one to their Esophageal Cancer Patients upon discharge from the hospital.

I would imagine that all EC patients are discharged with the understanding that they will have the benefit of a home health nurse until the caregiver feels comfortable with the cleansing of the incisions wherever they may be, and the drainage tubes, feeding tube and maintenance involved in keeping them in good order. I had one incision (where the Esophagus was removed) that came with a small tube that had a suction device on the end. Loretta emptied the very small container once a day, measured the contents, and kept a journal of the amount. Dr. Luketich reviewed the chart. Also the fluid draining from the tube had to become clear as well. The drainage decreased daily until finally there was no more to measure.

The feeding tube is absolutely a small device and nothing to be feared. You'll have no problems with that. I would think that John would be given a "portable unit as well".

I'm sure the "survivors" in your EC group are as happy as Loretta and I are to be able to offer some insight into what you can expect to encounter. It's always a great idea to talk to other survivors. Hopefully, John will "graduate" from patient to "survivor" soon. The two of you will have added immensely to your ability to empathize with others.

No one would place an order for Esophageal Cancer in order to increase their compassion level, but that is one of the "good" side effects. Loretta and I will never be the same. When we were at Family House Shadyside, we met so many patients who had conditions worse than Esophageal Cancer. Yes, worse by far. When we left there, we thanked God we "only" had Esophageal Cancer.

Some poor souls were sent home to die. I remember some who were fighting for their life. There were 5-organ transplant patients One particular young man only 26 years of age died soon after we left Pittsburgh.

Another young lady had to lug a cart around with a battery hooked to her body, for a very long time. She was waiting for a heart transplant.

Another was waiting for his second liver transplant. The first one was rejected. He finally got it, but not before it looked like he wouldn't live to receive one. His whole body was a brownish-green color. Now even sadder is that when I was last at UPMC for my yearly checkup, he was back for a 3rd liver transplant. His color was awful once more. It seems he had gotten the familiar "flu shot". The shot destroyed his transplanted liver. We went home wondering if he would live or die.

Another cancer patient went home to Guam to await death. His diagnosis - an incurable Cancer of the Tongue. He had already had half his tongue removed the previous year. One year later the cancer returned with a vengeance. There was no hope for him. We talked with him. I felt awkward as I sat beside him at the dining table. I was eating my "Cream of Wheat" while he could eat nothing. But he and his wife possessed a quiet calm, spirit of resolve about it all. Loretta talked with his wife. They were Christians who trusted God's grace to walk with them down this lonely road. She was confident God would not leave her side. She would "survive". That was a hard conversation to have. We felt so inadequate. I could only agree with her that God makes no mistakes, even though she was in deep despair. The trip home for them had to be one of the saddest, heart wrenching days of their lives. They arrived at UPMC with "high hopes" and departed with none. Loretta and I were returning home joyful that the MIE operation had been a great success. We have no explanation or insight into the workings of God. Why one dies and another lives is known only to God. We know not why!

Well, Lee, I say all that to say this. I'm sure by now that you have made friends with other cancer patients that cannot yet add the title, "Survivor" to their name. No doubt, you have also met many who have been able to console and comfort others since they are now "survivors". We who are survivors are duty bound, I feel, to shine a light for others who will come after us. This road has many detours and dead ends. Sometimes we feel we are in a maze and will never find our way out. We grope blindly seeking to survive one more treatment, one more day.

By reason of Jon's encounter with Esophageal Cancer, you are far wiser and more compassionate than ever before. Your enhanced "compassion factor" will be greatly welcomed by others who are just beginning to walk where you and John have already been. They will listen and be blessed by all the comfort that you give them.

"Reach out and touch someone" was a slogan someone "borrowed" from God. It was written by Paul the apostle, years and years ago. II Corinthians 1:3,4 says it best. " Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, Who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."

Lee, your ministry has been greatly enlarged by God. There will be many whose lives you will be able to comfort and console as never before. Loretta and I consider it a blessing to be able to comfort others with the same comfort with which God has comforted us. You are a richer woman and leader in your church for having been a caregiver of an Esophageal Cancer patient. God always has a purpose in our pain. We won't always know "why" till we meet Him face to face. Then we will joyfully say, "It has been worth it all."

May God continue to bless you and John in your EC journey. You're half-way home when you've finished the pre-op "torture" routine! Thanks for checking in. We seem to be "on a roll". God has been performing one miracle after another, and that's an answer to prayer.

He owes us nothing--we owe Him everything. He is indeed the God of all comfort.

William W. Marshall (& Loretta)
AKA "William66"
Virginia Beach, VA 23464

P.S. Here are some links describing "portable" feeding packs.

http://www.dhphomedelivery.com/blog/2006/11/portable-kangaroo-enteral-feeding-pump.html
"Portable Kangaroo Enteral Feeding Pump

The Kangaroo ePump enteral feeding pump is an excellent option for delivering nutrition to ambulatory patients in the community. The Kangaroo ePump weighs less than 2.4 lbs and has a 15 hour battery life, making it suitable for transport. The ePump will fit easily into a Kangaroo backpack or shoulder sling. The Kangaroo ePump will also function properly when tilted to the side or upside down.

Kangaroo ePump is extremely easy to use and very minimal training is required. Using the Kangaroo ePump is like going to the ATM machine."
______________________________________________________________________________________________________________________________________________________________________________________

http://www.pressreleasefinder.com/item.asp?id=5768

"...The Benefits: Award-Winning Design Achieves Vision of “Active Freedom” for Patients

The ZEVEX EnteraLite Infinity device, which won a Silver Medical Design Excellence Award at the 2005 Medical Design and Manufacturing Conference and Exposition, utilizes the precision and strength of tubing molded from GE –Silicones’ LIM liquid silicone rubber to help deliver consistent performance, safety, and mobility. In fact, the GE material is instrumental in maintaining a volumetric flow rate level accurate to within +/- 5 percent. This high level of accuracy helps facilitate that the patient receives the prescribed amount of nutrition in a controlled manner.

The robust pump design along with the injection-molded LIM 6050-D2 LSR part enable great accuracy control, even when the pump is in non-stationary positions. Children and adults have the freedom to enjoy normal activities by simply wearing a small backpack holding the device and nutrition-delivery set.

“We’re proud that ZEVEX has selected a GE – Silicones product to help meet the demanding needs of this smallest, most portable enteral feeding system available today,” said Eric Luftig, Healthcare Marketing Manager for GE – Silicones. “GE’s innovative materials are making a difference in healthcare where it’s most critical – in the quality of life for patients from infants to the elderly....”
______________________________________________________________________________________________________________________________________________________________________________________

http://www.moog.com/literature/Medical/Enteral/Clinical_Studies/Case_Study_-_Active_2_Year_Old_Thrives_Using_Next_Generation_Portable_Pump.pdf

"...Conclusion: Pump feedings were again recommended. Communicating with other parents, the caregivers learned of a NGPP that the patient could carry and could be programmed to deliver the prescribed feedings at desired intervals.
Use of the NGPP with a small custom backpack, programmed with interval feedings began August 2005. This allowed unlimited physical activity for the patient and uninterrupted daily activities for the family..."
______________________________________________________________________________________________________________________________________________________________________________________

Hi Lee,

Just wanted you to know, we haven't forgotten you. By now you have probably had your appointment with the surgeon. Is it a "go"? Let us know.

William W. Marshall
AKA "William66"
Virginia Beach, VA