Pre Christmas Update

On Sunday morning, the 25th of November, I was too weak to lead worship service at New Friendship Church.  My symptoms were very flu-like on Saturday evening, so I called in a dear friend who agreed to preach for me.  Thank you, Marty Bean.

It is difficult to know if these symptoms are from the chemo or from the cancer.  We will know by January.  Lack of strength, decreased mental acuity, stomach problems...  these have become my companions.

On Sunday morning, December 2, I was still weak but determined to lead worship.  A friend at church picked me up and off to church I went.  I don't like admitting it but I was dreading the service;  not because of the worship, but because of the way I was looking and the weakness my body was showing.

After the service I felt God's encouragement.  He let me know that the worship was all His and that New Friendship Church was able to pitch in and assist.

I had a diagnostic CT last week and met with my oncologist yesterday to review the results.  Not terrifying news, but not good either. We will be changing chemotherapy treatments to a drug that I will take once every two weeks.  The last drug I took was ineffective. 

There is some wonderful news.  I have the month of December to recharge my system.  No Chemo In December.  Yay!

There are times when everyone needs to conserve their energy for the most important tasks.  When you are sick conservation becomes doubly important.  I have a link listed here.  The site has a wonderful modern parable explaining how an ill person needs to conserve energy.

The writer is a Lupus sufferer and definitely has a way with words.  She tells a simple story and when she is done you have a new understanding about needing to conserve energy.  Take a look.  I think you will like it.

Merry Christmas to You

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

*********
Diagnosis:                                           Esophageal Cancer,  adeno-carcinoma at the junction  in July 18, 2011
Staged:                                                at 4a just a couple of days later
Chemo Port Installed:                         July 31, 2011  
Began radiation and chemotherapy:   early August 2011 
Esophagus removed:                           Jan. 19, 2012
Surgery Approach:                              Large belly incision to allow access to gall bladder, lymph 
                                                             nodes, esophageal junction with stomach, etc.  Large back 
                                                             incision to allow access to the upper esophagus and lymph  
                                                             nodes through the ribs.   
Hospital Stay:                                      10 days
Feeding tube removed:                       end of Feb/first of March
Life changes:                                       Type 2 diabetes disappeared.      Current weight <200 lbs. (This 
                                                              is a HUGE loss for me.)   Very little stomach remains.  Small 
                                                              meals and many meals.   Dumping Syndrome remains.  (Look 
                                                              it up.)   Weakness.  Some depression.  I have received love I 
                                                              didn't know I had.  God has emptied His blessing bucket on 
                                                              me many times since diagnosis.   

TIME With Esophageal Cancer (or without)

Time... the most precious commodity on our balance sheet. It is given to everyone in the same amounts. Some of us use it wisely. Some of us do not. We get it one moment at a time and our goal is to live best and most within that particular moment.

Father God, this Thanksgiving I thank you for the time you have given me with my family and loved ones. To spend Thanksgiving with them was a gift within a gift.  On Black Friday, I will spend time with even more family and loved ones.

I am not simply thankful. I am thanking you as the Giver of Time for your gift to me.

None of us knows the total time we have, but we know the moment in which we live. I choose to live within that moment and enjoy the time I know.

Thank you, Papa.

*********

Diagnosis:                                           Esophageal Cancer,  adeno-carcinoma at the junction  in July 18, 2011
Staged:                                                at 4a just a couple of days later
Chemo Port Installed:                         July 31, 2011  
Began radiation and chemotherapy:   early August 2011 
Esophagus removed:                           Jan. 19, 2012
Surgery Approach:                              Large belly incision to allow access to gall bladder, lymph 
                                                             nodes, esophageal junction with stomach, etc.  Large back 
                                                             incision to allow access to the upper esophagus and lymph  
                                                             nodes through the ribs.   
Hospital Stay:                                      10 days
Feeding tube removed:                       end of Feb/first of March
Life changes:                                       Type 2 diabetes disappeared.      Current weight <200 lbs. (This 
                                                              is a HUGE loss for me.)   Very little stomach remains.  Small 
                                                              meals and many meals.   Dumping Syndrome remains.  (Look 
                                                              it up.)   Weakness.  Some depression.  I have received love I 
                                                              didn't know I had.  God has emptied His blessing bucket on 
                                                              me many times since diagnosis.   

A Thanksgiving Week Update

They gave me a unit of blood the other day.  I have been anemic since beginning therapy and lately I have had no strength and no energy.  It feels like I am wearing a suit made of iron.  Heavy, weighing me down, making movement an effort.  The blood infusion was to give me a bit more energy.  Evidently, there is life in the blood.

This is the first time I have taken blood.  Months ago, when the doctor mentioned the possibility of needing some, I did not know what to think.  To tell you the truth, I was hesitant.  But when the medical team told me this would strengthen me I wanted to do it.  I need more strength.  The treatment improved my mental acuity, but has not yet helped with my energy level.  It appears that exercise is the answer.  Oh well, looks like I'll have to do it the hard way.

The doctor wanted to schedule my next scan for just before Christmas.  The scan will see how this chemo regimen is working.  I asked him to wait just a couple more weeks and do it after the first of the year.  We can celebrate Christmas without the threat of a test hanging over our head.

For now, I take chemo once a week at my infusion clinic.  The drugs are not too bad, but they have a sleepy effect on me.  Thursday's seem to be my worst day.  Oh my, that means Thanksgiving Day will be tough.  But Susan and I get to see our children, grandkids, and my mom on Thursday.   I will not lose that blessing.

My teaching yesterday was that Thankfulness is not the same as Thanksgiving.  Thankfulness is a feeling or an emotion.  Thanksgiving requires you to give thanks to someone.  Leading up to Thursday we will be thanking God because...      We'll do this each morning to remind us that God is the source of all the blessings in our life.   We are also going to give some thought on what to give thanks for at the table on Thursday.

I have to thank God.  I have to give him thanks.  Otherwise, I have lapsed from purposeful Thanksgiving to simple thankfulness.  I shouldn't do that; not on such an important day.
********
Diagnosis:                                           July 18, 2011
Staged:                                                at 4a just a couple of days later
Chemo Port Installed:                         July 31, 2011  
Began radiation and chemotherapy:   early August 2011 
Esophagus removed:                           Jan. 19, 2012
Surgery Approach:                              Large belly incision to allow access to gall bladder, lymph 
                                                             nodes, esophageal junction with stomach, etc.  Large back 
                                                             incision to allow access to the upper esophagus and lymph  
                                                             nodes through the ribs.   
Hospital Stay:                                      10 days
Feeding tube removed:                       end of Feb/first of March
Life changes:                                       Type 2 diabetes disappeared.      Current weight <200 lbs. (This 
                                                              is a HUGE loss for me.)   Very little stomach remains.  Small 
                                                              meals and many meals.   Dumping Syndrome remains.  (Look 
                                                              it up.)   Weakness.  Some depression.  I have received love I 
                                                              didn't know I had.  God has emptied His blessing bucket on 
                                                              me many times since diagnosis.  

Rear View Mirror

A friend said to me the other day, "You ain't got no butt."  (Can a preacher say "butt"?  Is that worse than "bottom", "backside", or "sitter"?)

His comment raised my curiosity and I rushed home to check it out.  I got home, went into the bathroom, and grabbed my rear view mirror to have a look at the aforementioned, once ample,  section of anatomy.  I discovered that while I do indeed have a bottom, it seems to have dropped out of sight.

Gravity has struck again.

A silly, but true, story to illustrate an important point.  Many of us fighting cancer lose a lot of weight.  I have been hovering at 195 lbs for a couple of months.  I have not been at this weight since I was in my 20's.  Before my diagnosis, I lost 40 lbs through proper diet and exercise.  After chemotherapy and radiation began I lost more, and have continued to lose since the surgery.  I have lost a total of 145 lbs so far, and may lose some more in  the near future.

This is not bragging.  It actually is troubling.  Cancer eats away at the body.  Chemotherapy and radiation make you too sick to eat.  There often is a surgery that inhibits eating.  Every time I look in a mirror I am reminded of the battle going on inside me.  I am forced to consider my new reality and totally different self image.

These extreme body changes can do a number on the cancer patient's psyche. It is no wonder that despondency and depression are so common among Cancer Warriors.  Cancer Warriors include patients, caregivers, family, and loved ones.   If you  are a Cancer Warrior and you feel depressed, despondent, blue, blah, or yucky, I want to encourage you to seek help.  You need someone to walk beside you.  Do not be ashamed to seek out a professional.  You have moved out of the Present Moment into a place of shadowy maybe's.  Another person's objective viewpoint will help you to regain a proper perspective. 

If you are watching a friend lose weight to cancer, remember their body is also losing strength.  Muscle mass is shrinking.  Your kind offers of physical chores might be appreciated.  Car washes, oil changes, gutter clean outs, etc might be just the thing to brighten someone's day and to express your love.

When you express your love and brighten someone's day you become a Street Light.  Cancer Warriors need Street Lights.  The Street Lights keep us straight.  Thank you for caring.

********

Diagnosis:                                           July 18, 2011
Staged:                                                at 4a just a couple of days later
Chemo Port Installed:                         July 31, 2011  
Began radiation and chemotherapy:   early August 2011 
Esophagus removed:                           Jan. 19, 2012
Surgery Approach:                              Large belly incision to allow access to gall bladder, lymph 
                                                             nodes, esophageal junction with stomach, etc.  Large back 
                                                             incision to allow access to the upper esophagus and lymph  
                                                             nodes through the ribs.   
Hospital Stay:                                      10 days
Feeding tube removed:                       end of Feb/first of March
Life changes:                                       Type 2 diabetes disappeared.      Current weight <200 lbs. (This 
                                                              is a HUGE loss for me.)   Very little stomach remains.  Small 
                                                              meals and many meals.   Dumping Syndrome remains.  (Look 
                                                              it up.)   Weakness.  Some depression.  I have received love I 
                                                              didn't know I had.  God has emptied His blessing bucket on 
                                                              me many times since diagnosis.  

Good News and Bad News

I took a chemo treatment on Monday the 1st.  I also saw my oncologist.  It seems my CAT scan from the last week in September shows the cancer has returned in the form of metastasis on the liver.  This is the bad news.  But it is not the most terrible news.

Esophageal cancer almost always finds a way to come back. Each time, we have to beat it back into remission/submission.  My upper endosocopy beat it back.   My surgery beat it back.  Now we change chemo tactics and beat it back again.  I have friends that have been through this and are still fighting at 5 and 6 years out.  I am 1 year 4 months out from diagnosis.  There are many who never made it to where I am now.

My new chemo treatments will begin on Monday the 15th.   I will go in every three weeks for an infusion.  I no longer have to wear the pump that I used between treatments.  It pumped a special concoction called FU5, a particularly nasty cocktail.  The new treatment will probably be easier on me but I will most likely lose my eyebrows. (It would be nice if I lost the ear hair and nose hair as well. Why does getting old mean getting hairy?)

Here's the good news.  I'm not kicking up my heels, but I am not bummed-out.  It was not totally unexpected and I continue to be blessed.  I have a supportive, praying wife, a prayer warrior for a mama, praying friends, a God who answers prayers, and the promise of eternal life without cancer.  I am actually quite well and secure, thank you.

I have children who know my Lord and their love surrounds me.  I have a church who supports me and shows me their love.  I have the readers of this blog who keep up with Susan's and my journey.  I suspect that by the end of October there will have been over 7,000 hits on this site.  You are sunbeams, breaking through weakness in the clouds.

What can you do?  The same thing you have been doing.  Continue the prayers.  Continue the support.  Continue the love.

May God richly bless each and every one of you.
JM  and SM
********

Diagnosis:                                           July 18, 2011
Staged:                                                at 4a just a couple of days later
Chemo Port Installed:                         July 31, 2011  
Began radiation and chemotherapy:   early August 2011 
Esophagus removed:                           Jan. 19, 2012
Surgery Approach:                              Large belly incision to allow access to gall bladder, lymph 
                                                             nodes, esophageal junction with stomach, etc.  Large back 
                                                             incision to allow access to the upper esophagus and lymph  
                                                             nodes through the ribs.   
Hospital Stay:                                      10 days
Feeding tube removed:                       end of Feb/first of March
Life changes:                                       Type 2 diabetes disappeared.      Current weight <200 lbs. (This 
                                                              is a HUGE loss for me.)   Very little stomach remains.  Small 
                                                              meals and many meals.   Dumping Syndrome remains.  (Look 
                                                              it up.)   Weakness.  Some depression.  I have received love I 
                                                              didn't know I had.  God has emptied His blessing bucket on 
                                                              me many times since diagnosis. 

September Emphasis on Cancer

Are you a white man older than 60?  Are you or have you ever been overweight?  Have you suffered from heartburn, GERD, or gastric reflux?  If so, you are at risk for Esophageal Cancer?

Lots of emphasis on Cancer Research this month.  Lots of fundraising going on.  But regardless of the influx of cash for cancer research there is still much to be done.  I am not a cancer expert but I can speak to my own particular beast, Esophageal Cancer.

A key to surviving cancer is early detection, but early detection of esophageal cancer is almost always accidental.  In my case, it was not detected until I had trouble swallowing.  My doctor referred me to a GI Doctor for an upper endoscopy.  I was expecting to hear that I had some bands in my esophagus needed expanding.  Instead, my gastroenterologist was forced to say those awful words, "John, you have cancer."  This was July 18, 2011.  A few days later I was staged 4a.  My tumor was already 3 1/2 inches long.

Unfortunately, the only way to detect EC is biopsy or sight and this means an upper endoscopy.  Early detection almost always happens with an examination for an unrelated symptom.  The reason EC is so awful is because it is generally diagnosed too late.  The majority of the folks I talk to were not diagnosed until they were stage 3 or 4.  Upper endoscopy's are relatively inexpensive, but insurance companies are less than willing to allow them as diagnostic tools. For one reason, EC is relatively rare.

What if a blood marker for EC were discovered?  How about a mixture you could swallow that would point to the presence of EC?  I guess a CAT scan does this, but let's look for a less expensive test.  Could we make biopsies part of the protocol on every upper endoscopy?  This would early detect many EC's.   These are a couple of examples of EC research into early detection.

A cure for EC is in the future but early detection can be now.  Your donations into cancer research are helping to make early detection a reality.

Here is an article about EC and early detection.  It is from the website linked here:   http://www.kjonline.com
********

September 12

Esophageal cancer can be difficult to diagnose

Letter to the Editor

In 2006, Gov. John Baldacci proclaimed Sept. 13 Maine's Esophageal Cancer Awareness Day.

Since then, many Mainers have taken positive steps to ensure their good health by educating themselves about this horrific form of cancer.
Esophageal cancer is still regarded as rare, even though it has grown 800 percent since the late 1980s. It is more common in men than women in this country, and is more common in men older than 65.
The American Cancer Association estimates that this year 17,460 new cases will be diagnosed and 15,070 people with the disease will die. This statistic is sickening.
Because of a lack of clear symptoms, it is usually difficult to diagnose esophageal cancer.
The most common symptoms are gastroesophageal reflux disease, chest pain unrelated to eating, weight loss, vomiting blood, and difficulty swallowing liquids or solids. By the time swallowing problems arise, the cancer usually is in stage 3 or 4.
This was the case with my late husband, John. He lived only four months after his diagnosis.
Much has been learned since 2006 about esophageal cancer, its treatment and results; however, much more research is needed.
If you, or anyone you know, has experienced the above symptoms, please contact your physician.
A few simple tests can save lives.
Connie Corrigan
Former board member, Esophageal Cancer Awareness Association
Wells

Jackson and Abby: Good Things in Small Packages

This is Jackson and his little sister, Abby.  They and their families are my heroes, my Street Lights.  Today I'll share about Jackson.  Later, I'll share about Abby.  From them I learned to keep on keeping on.

Jackson is a full of life 4 year old who has come through a fight with cancer.  As a baby he was diagnosed with Neuro-Blastoma.  This is bad stuff.  Today I share a post written by his mother to show you a little of the hell on earth that their family experienced.   And yet, God walked with them all the way.

Photo 3: On Everett's birthday, we met with Jackson's oncologist, nurse and social worker, along with both of our parents, to discuss Jackson's treatment plan. It was then that we discovered Jackson had Stage 3, n-myc amplified high risk Neuroblastoma. We were told his treatment would last around a year in length and were given a 30-40% chance of overall survival. 

In that meeting, I just felt myself getting madder and madder at what the doctor had to say. My child was not a statistic...they could take those numbers and shove them. 

The first thing on the treatment plan was 6 rounds of chemotherapy and we were admitted immediately following that meeting to hydrate and begin the next day. This picture is taken during Jackson's first round of chemo; we were sitting on the floor with my mom and a couple other people, playing with stuffed animals as the chemo went through Jackson's CVL. 

I've always looked at his face in this picture...having a blast eating goldfish and playing. Today, I looked at the picture and saw my own face and I realized I was trying very hard not to cry. Jackson could power through anything, and I needed to learn to follow his lead.