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GIST Support International - Reflections Series
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Christian Reflections Series

by John Tung

The first  four reflections below are ones  I wrote  after being diagnosed with GIST on August 31, 2006.  I am a Chinese-American.  I am also a pastor of a church in Rockville, MD, and going through this GIST experience has also been a sharing experience with my congregation.  I think this perspective may be unique among GISTers.  These four reflections were sent to my church and to people outside of our church who were supporting us.  That is the context of my sharing.  The four articles are kind of a series, written chronologically, and together they show my feelings over the first three months of my illness.

I have to say in many ways Marina is a hero to me, for her insight and personal sharing.  Marina and many others’ stories and contributions, including medical awareness, have helped me tremendously and I want to give back in some way to others as I have received.

I should add that I am doing very well now and have returned to full-time ministry in my church, for which our people and I are very grateful.

The fifth reflection below describes a new chapter in my GIST journey: surgery and recovery in 2008.

The sixth reflection is an update on my condition three years after surgery and recovery.

My Experience With Cancer  written 9-29-2006

How Do I Spend My Time?  written 10-26-2006

The Differences Gleevec Has Made written 11-5-2006

What Happens When the Pastor Gets Sick? written 11-14-2006

My Decision for Surgery and the Recovery Process written 6-6-2008

An Update Three Years Later written 5-27-2011

 

 

 

 

The Tung Family: John, Elizabeth, and their children

 

MY EXPERIENCE WITH CANCER
John Tung, 9-29-06

It’s been 2½ months since I found out I had cancer.  It’s been an emotional roller coaster ride during this time.  Currently, I am taking Gleevec pill once a day as the treatment, and I do not have much serious side effects.  The Gleevec is supposed to shrink the tumors so that eventually surgery can remove the shrunken tumors.

But earlier this week I didn’t feel as good emotionally due to the PET scan report that I received.  The PET scan, which is a more sophisticated scan, showed that I have 3 tumors in the liver, the largest of which is 9.5 cm, which means it has grown 1.5 cm since the CT scan in July.  But besides these three tumors in the liver, the PET scan also showed 6 smaller tumors in the liver measuring on the order of 3 cm.  This news has gotten me down.  I didn’t know there were 6 other smaller tumors.  I am now hoping that Gleevec will shrink all these tumors.

But this is an example of what I mean about an emotional roller coaster ride.  When there are good things happening, such as not having serious effects from Gleevec, then I feel happier.  But when I receive news that I have more tumors, then it gets me emotionally down.  My wife goes through this roller coaster with me.  So, there is an emotional component to this, which depends on the news that I receive.

But as far as spiritual aspect is concerned, that is a more stable area of life.  Spiritually, I feel God is with me.  The fact that I can take Gleevec for my cancer is something to be thankful for.  Of the 1.4 million cases of cancer diagnosed each year, only 5,000 each year are my cancer type: Gastro-Intestinal Stromal Tumors (GIST).  That is 1/3 of 1% of all cancers.  It is so rare that many doctors will never deal with a GIST case their whole practice.

With GIST, however, and taking Gleevec, I can avoid chemotherapy and radiation, because Gleevec has been found to be effective in treating GIST.  It won’t cure it, but it will shrink the tumors in most cases, and then through surgery, the cancer can be removed.  So, this is something in which I feel the mercy of God that I have GIST rather than some other kinds of cancers.

As I think about me getting GIST, I think that there are actually other things that can be worse.  I would rather have GIST than my spouse getting it.  I would rather have GIST than my kids; wouldn’t you?  I would rather have GIST than a US soldier being tortured in Iraq.  There are worse things than having GIST.

I have learned that GIST is caused by a random gene mutation, and not due to environment or lifestyle factors.  I have learned of an online support network of GIST patients and their caregivers.  I am now on their list serve and receive daily news and sharing from this “family” of fellow GIST people.  Sometimes this group even has small get-togethers for sharing and to meet each other.  I would very much like to meet some other fellow GIST-ers in the future.  I would really like to find out what their experience has been like.  So, with this online group, I know that I am not alone.

I feel the presence of God in other ways.  The great support from the church and my family has been a blessing.  My extended family has sent money and their thoughts and prayers.  I think everyone in the church is praying for me.  Many bring us food or send us cards.  It is a great support network to be part of. 

I have also asked other pastors I know and friends around the country to pray for me.  So, there must be thousands of people praying for us, from CA to Switzerland.  It is true that I am receiving so much support because I am a pastor, but nevertheless, the support I receive gives me much energy and strength, and I know God is answering the prayers of all these saints.

Gleevec is also covered by my insurance.  Retail, it costs $95 per pill, but with my insurance, I pay only 25 cents per pill.  That is also something I can be thankful for.

But I also must admit that there are times when I do think of death.  Gleevec is not curative, the surgery is.  So, we must wait for the tumors to shrink and then approach surgery.  With so much cancer in me, I do not know how much time I have to live.  From what I have read about GIST, Gleevec can extend life by a median of 2-4 years, which if you ask me, I will take it.  But suppose I have less time than that?

It’s possible I might not have as much time as I’d like.  But I have to accept it.  I feel that I have lived a full life already in 48 years.  I have experienced so much in life, so much good things.  My children are old enough that they are all on the verge of adulthood.  I feel that if I were to go sooner than later, God will take care of them and of Elizabeth so that I do not have to worry much about them.

And if I do die, which all of us must experience, I will be with Jesus.  My sufferings will be over, and I will be with Christ face to face.  So, there is joy.  But those I leave behind will feel the loss.  They will grieve, and I don’t like to see them go through that.

I must make it very, very clear that I want to keep fighting to live.  I do not plan on leaving soon.  I want to live.  I want to walk my daughters down the aisle for their wedding.  I want to hold my grandchild.  I want to keep experiencing life.  And thus I fight on.  But death becomes much more of a reality to me since I knew I had cancer.  And sometimes I get scared, especially of the process of suffering - if it is a prolonged process.  But other times, I feel I am going to a better place.  And thus there is eternal hope.  This makes me appreciate the hope of eternal life that we have in Christ.

People ask me how is Elizabeth taking all this.  I tell them that she has experienced so much in life herself, that she is able to take this in stride.  If she had not gone through as much difficulties in her life and had been a model of “success,” maybe she would see taking care of me now as a real pain and inconvenience. But because of all that she has gone through already, I think she is able to accept this and care for me.  She is doing more errands and driving than me now.  There is kind of a role reversal with her doing more and more.

I have come to appreciate her more.  I thank her for taking care of me.  Sometimes I snap at her because I need someone to dump on.  And she takes it.  She is patient and caring with me.  I look at her and appreciate her more than before.  I love her more than before.

This is another thing that has happened as a result of my cancer: I am using the word “love” to more people.  I use the word “love” to my immediate family… because of the cancer.  I use the word “love” to my extended family in NY/NJ/FL… because of the cancer.  I use the word “love” to people at church… because of the cancer.  It has brought us all closer together because of the cancer.  I wish it wouldn’t take the cancer for me to say this word more, but it seems that’s what it took for me to do so.

Someone from my men’s group told me that at every chapter of our life, God has a task for us to accomplish.  I think he is right.  I think my task for this chapter of my life certainly includes telling others what I have gone through, both the reality of the ups and downs and also of the goodness of God in it. 

There may be other tasks that God wants me to accomplish in this chapter, but I know at least it includes this aspect of communicating honestly what He is showing me.  Thus, I see my writing here as part of that task from God.

Someone also asked me that since I’ve been caring for people as a pastor for so many years, how have all those experiences of caring for others helped me now?  I think all those years in which I visited others who were sick or who had cancer, I learned from them how to deal with it.  For those who were Christians, their faith guided them through the hard times.  They also showed their tears, their struggles and worries.  I got to see all that.  I got to walk with them for that little period of time that I was with them.  And I think all of those experiences went inside of me and built up a strong foundation of knowing how others experience suffering and how they find the strength to deal with it.  So that now, when I am the one being sick, all those experiences - which were buried within me somewhere - now have come back to serve as energy and encouragements and examples of how I can deal with it.  Through their sufferings, I have learned how to deal with mine.  In that way, I also thank God for giving me so much previous experiences from others so that now it benefits me.

 

How Do I Spend My Time?
John Tung, 10-26-06

You might wonder how a cancer patient spends his time.  You might wonder how I spend my time since I am working only 3 half days per week due to my cancer.

Well, at first, before I took Gleevec, I was too weak to do much of anything but sleep or lie down, except when it was time to eat or go somewhere.  But now with the aid of Gleevec and the return of more energy, this is how I spend my time.

I try to rest by sleeping about 8 hours per night.  Without the pressure of waking up at a certain time for work, I can decide when to wake up.  But I am a person who cannot sleep too long or sleep in, so generally I sleep 8 hours, and then I wake up.  I want to make sure I get enough rest.

Then I make myself a nice breakfast, usually of eggs and grain bread.  In the past, when I was “healthy,” I would grab a bowl of cereal and rush out the door in order to get to the office by 8 AM.  That has changed.

I eat healthier now.  I pay attention to what I eat.  I no longer eat fried foods or drink much soda or coffee.  I try to minimize sweets and fast food.  I eat a lot of fruits and vegetables, grains, and drink a lot of water.  I don’t eat much red meat, but more white meat, but even then, in moderation.

Now, I also relax by watching TV.  I do have time, so I watch cooking shows or ESPN or Travel Channel, my three favorite kinds of shows.  I have learned how people cook some really nice dishes, and I have “traveled” the world vicariously through the Travel Channel.

For exercise, I take walks around the neighborhood, which is something I’ve never done before.

I go to Barnes and Noble to read.  I prefer the atmosphere at B & N to read rather than staying at home.  I have read some cancer books and learned from them.  I also read NEWSWEEK and some Christian magazines.

I have appointments with the oncologist, travel to get PET scans, go to the lab to get blood work done.  I have to make phone calls to follow up on these medical issues and other medical questions.  Sometimes this takes up a lot of time.  I keep track of my health in my journal.  I also use the Internet to keep in touch with my HMO and researching information on my cancer on the Internet.  I send out updates on my condition to family and friends.

I still work, mostly through my laptop, in addition to going into the office those 3 half days.  I get emails about ministry issues from church and church members and I reply to them.  I give my input of preaching schedule, worship services, special events, caring for people, and other ministry related issues.  The laptop has provided my link to ministry and to church.

I meditate.  I look out my window at the back yard and think about things.  Things such as beauty, nature, people, God, and I try to calm myself and relax through meditation.

I have longer devotions, not rushing through them but savoring certain passages and reflecting more deeply on them.  I write my thoughts down on the laptop and keep a record of them.

I write a journal on the laptop which is over 100 pages long now, single spaced.  I include routine things such as what and when I eat, but also deeper things about how I feel, what I have learned about my cancer, encouraging things people have said to me.  This is a very precious thing to me now, this journal, and I write in it each day, often writing entries many times per day.  This journal has provided the basis for writing some longer reflections and articles.  Whereas I used to write sermons, now I write about my personal experiences.  My writing has changed.  It is now more personal.

I am invited to eat out with people more than before.  People want to see me gain the weight I lost, and the fellowship of eating together is good for the soul as well as the body; it’s almost as if we can eat together, things must be going well.

People visit us.  Some people from our past, whom we have not seen for 8-10 years, have come to visit us.  Old friends from PA, DE, OH, and NC have made stops to see us.  The fact that I am ill brings them to me.  I enjoy seeing these old friends and they bring back good memories from our shared past.

All in all, it’s not a bad way to live.  I get to rest, to relax, to think, to write, to eat, to take walks, to read, to have friends visit us, to receive get well cards and emails from many people.  If I wasn’t sick, I would say this is the best way to live.  Not too rushed, living at an easy pace, tending to simple things and feeling that my spirit is filled with good things and experiences.

Now, don’t get me wrong, I would gladly trade my cancer away instead of getting this kind of life.  I would gladly give away my cancer to have my old life back.  But if I am going to have cancer, I have found - which I didn’t know before I was sick - that there is an interesting and slower paced life that is actually quite healthy.  The way I am living now is good for me to get healthy and recover.  I just wish this kind of life can happen without an illness.  It would seem to be the ideal life then.  It is almost like a retired person’s life.

But along with this new way of life, there is the fact that cancer is always in the background.  It is never far from my mind or life.  I have to think about it, respond to it, answer questions about it, learn about it, find ways to treat it, and sometimes get scared by it.  Almost everything I do is a response to cancer.  It is always there.  Not always frightening, but enough that I cannot forget it.  There is this good life, but with an enemy that is so close to me, actually inside me.  It is kind of paradoxical that the enemy within is also what has created this new life for me.

In the end, whether we are healthy or ill, it is God who supplies and who supports us and blesses us.  A busy life usually means we are in good health, and a slower life usually means we are not in as good of health.  But either way, God is good and there is life to be lived, a life that is good and that can still give us joy.

In one of the cancer books, the author, who is a cancer survivor, said that cancer is like a wake up call.  It wakes you up to new possibilities and a new lifestyle.  Having experienced cancer, I can say that I agree.  I am awake now.

 

The Differences that Gleevec Has Made
John Tung, 10-25-06, 11-5-06


Before I took Gleevec I couldn’t sleep on my side - the tumors would start to add pressure to my side - so I had to sleep straight on my back.  But now with Gleevec, I can sleep on my side.  This seemingly simple thing means a lot to me because it shows that very simple things that we take for granted are affected by cancer.  Cancer touches every part of our life.  So to be able to do again what we used to do, even if it is a simple thing, means a lot to me.
 
Before Gleevec, I would be almost out of breath going up a flight of stairs since the tumor was pushing against my diaphragm.  But now I can go up stairs without this problem.
 
Before Gleevec, my voice was slight, as once again the tumor pushing on my diaphragm restricted the amount of air in my breath, but now I can talk normally, and I am planning to preach again beginning in Dec.  I couldn’t carry a note for long while singing.  I had to pause in between some phrases in order to finish singing the words.  I didn’t feel like talking too much.  Stopped preaching and even making announcements.  Needed some encouragements and pushed myself in order to make announcements.  Not so anymore. Couldn’t even stand for the whole singing time during worship.
 
Before Gleevec, I was too weak to feel like driving.  I could drive, if I really had to, but I usually asked Elizabeth or Christopher to do the driving.  Now, after Gleevec, I can drive again.

Before Gleevec, I even had trouble bending down to tie my shoes or pick up something from the floor.

Before Gleevec, putting the seatbelt around me while in the car was very uncomfortable as the seatbelt put pressure on the tumors.

Before Gleevec, I had to walk slowly, sometimes even bent over.

Before Gleevec, I moved about very deliberately. 
 
Before Gleevec, I didn’t have the energy to go into work, now I do, and do so for 3 half days per week.
 
Before Gleevec, I didn’t have much of an appetite.  I ate about half of what my wife ate.  But now I eat more than she does, as I have returned to my normal appetite before I got sick.  While at OBX vacation, I ate just a few bites of my entrée, and had to box up the rest to take with me.
 
These differences are all due to Gleevec.
 
I also have good news to share as far as the sizes of the tumors are concerned.  A request to the radiologist to give us tumor measurements from the last PET scan has shown that the tumors have shrunk by 43%.  This is after only 3.5 weeks of using Gleevec.  This is another reason to thank God.

 

What Happens When the Pastor Gets Sick?
John Tung, 11-14-06
Thanksgiving Sharing to Church

Thank you for this opportunity to share with you at this Thanksgiving program.

As most of you know, I was diagnosed with cancer a little over 100 days ago.  Since that time, my life has changed greatly.  I have written of some of those changes in two articles, which some of you have read.  In those articles I have written about how scary the experience has been, but also things that I have learned.

What I would like to share tonight is from a different angle than those two articles.  I want to share from the point of view that the church dealing with a pastor who has a serious illness is a new experience.  Most churches may not have had to deal with the experience of their pastor being seriously ill.  Pastors in general have pretty good health, and they do not take a lot of time off, so I think having a pastor who is sick for a good deal of time is a pretty new experience for a church.  I think it is true for our church.

And with a change like this, everyone must adapt to it - both the people and the pastor.  Most of the time it is the pastor who is giving to the people and serving the people, but what happens when the pastor is sick?  Who takes care of the people and who takes care of the pastor?

I think we all know that it is ultimately God who takes care of the people and the pastor.  Yet, when the pastor is sick, God uses the people to take care of the pastor and the church.

What do I mean?

Since my illness, I have seen the church people step in to help me.  You have prayed for me and my family.  You have sent us get well cards.  You have cooked meals for us.  You have visited us.  You have emailed your love to us.  One family wrote these words to us: “Nothing is more painful than to see God’s servant is suffering.  You and your family are in our thoughts and prayers.  Here is the word to share with you: ‘I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.’ Rom. 8:18. Love in Christ.”  That was very encouraging - to receive words like that.

In other ways you have also helped me.  In church ministries, you have stepped in to take more responsibilities in my absence.  I have seen lay people take the initiative to care for newcomers and visitors.  They have invited newcomers to cell groups and have taken more initiative in talking to them.  I have seen church leaders - lay and staff - fill in for me in the pulpit to preach or to teach.  I have seen the English deacons taking on greater responsibilities.  I have seen the administrative staff taking more responsibility for me in my absence.  So that even though I am sick, the ministry to people can continue.

It’s almost as if the role is reversed: the people caring for the pastor instead of the pastor caring for the people.  But when the pastor is sick, I think this is a natural response.  It is like parents usually taking care of child, but if the parent is sick, now the child has to take care of parent for a while.  It is a time to grow for the people.  It is a time to receive for the pastor.  It is a time to be thankful for the children who are becoming mature.  New things and new ways of growing can come from this experience.

But it is not only the people and the church that have to adapt, I have had to adapt.  I have not preached for several months, but I can still communicate through emails and through articles.  I am not writing sermons, but I am communicating about God by sharing with you in words of testimony and with my writing what I am going through.  So, I am still ministering to people, even though the method of ministering to people has changed.  But both are from God.

I am not giving as much to others as I did in the past, but I am learning to receive, which sometimes can be hard for us to do.  But as long as it is done out of love, both giving and receiving is doing the will of God. 

I am not speaking from my strength now, but from my weakness, which can also be hard to do, but which may touch more people, since it comes from the heart.  As the apostle Paul wrote, “When I am weak, then I am strong.”

At one of our recent local English Pastors Fellowship meetings, when the pastors were praying for me, one of them prayed that “Like the paralyzed man’s four friends who lowered Jesus through the roof to be healed by him that Jesus would also bring healing to me.”  I was very touched by that.  I was the sick patient, who needed the prayers of my fellow pastors, as they brought me before the Lord for healing.  I was weak, but I had the support of other pastor friends, and they had the strength to pray for me.  I had been the coordinator for the Pastors Fellowship, but now I was the one that needed prayers.  I believe Christian living is often like that, when one member is weak, then God helps the other members to be strong, so that we can all support one another and find strength and courage: the strength and courage that we may lack when we are just by ourselves.

As Eph. 2:16 says, “From him the whole body, joined and held together by every supporting ligament, grows and builds itself up in love, as each part does its work.”

From my battle with cancer, I have learned now not to be overwhelmed when facing a serious situation.  And maybe the church has also learned the same lesson.  The situation may seem tremendous and frightening at first, but when we come to the Lord and are willing to let others care for us, there can be great love and support.  And as a result, our fears get less, and our courage gets a lift.  And in this way we can step by step grow in our faith and in our love for God and for other people.  We are, after all, one body.  And there is nothing more beautiful than to see that body work in action.  Thank you for your love for me and my family.  And thank God for his love for all of us.  And thank God I am getting better.  The Gleevec pills I am taking are working, the tumors are shrinking and I have more energy and good appetite now.  This is my testimony to the grace of God.  Thank you.

 


My Decision for Surgery and the Recovery Process
John Tung, 6-06-08

I owe GISTers an update on my health since the last articles were written.

After being on Gleevec for about 9 months (Sept. 2006-June 2007), and receiving news that my tumors had shrunk quite a bit, and doing quite well, I made a decision  to consult a surgeon about the possibility for surgery.

I consulted one surgeon and he did not recommend surgery.  I was happy with that recommendation.  But upon some other family and friends’ suggestion to seek out a second opinion, I did so in Sept. ’07.  This second surgeon recommended surgery.

Now I was faced with a dilemma.  If both surgeons had said no to surgery, I would have taken comfort in the two corroborating opinions, but what do you do when you have two differing expert opinions?

After much deliberation, which led me to appreciate people who have to make decisions about surgery,  I opted to go ahead with it.  My main reason to go ahead with it was the thought that perhaps at some point I would need surgery anyway, and it is better to get it earlier than later, while I was younger rather than older.  The other reason was that this surgeon had performed this kind of complicated surgery before and there were no fatalities!  A third reason I wanted this surgery was to possibly help me avoid resistance to Gleevec and enable me to stay on Gleevec for a longer period of time.  Having tumors would increase the likelihood of resistance to Gleevec.

So, finally on Nov. 8, 2007, I had surgery at Memorial Sloan-Kettering Cancer Center (MSKCC) by Dr. Ronald DeMatteo.

Here are a few entries from my journal that gives you an idea of what I felt and what happened just prior to surgery:

Nov. 4, 2007: Sent this e-mail to my daughter, who was 21 at the time:
“Wanted to send you some encouraging words from devotions I have been doing recently.  They gave me a lot of comfort and hope.  Hope they do the same for you.
 
Ps. 40:1-3, “I waited patiently for the LORD; he turned to me and heard my cry. 2 He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. 3 He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the LORD.”
 
Ps. 41:1-3, “Blessed is he who has regard for the weak; the LORD delivers him in times of trouble. 2 The LORD will protect him and preserve his life; he will bless him in the land and not surrender him to the desire of his foes. 3 The LORD will sustain him on his sickbed and restore him from his bed of illness.”

My daughter’s reply was, “thanks for the verses from psalms, very helpful.”

I held on to Ps. 41:3 in particular as God’s promise to me.

On the day of surgery itself, I wrote this later on after the surgery:
“My kids came in to say they love me. I read for inspiration 2 Chronicles 20:17 and Psalm 121  before surgery."

I only remember walking into the operating room from pre-op room feeling very lonely.  I’m holding my little gown, and walking into this large operating room with four very bright shiny lights all on the operating table.  I felt like a lamb going to the slaughter.  Then the anesthesiologist introduced herself to me and said I should take a nap, so I did, and that was it, I don’t remember anything else. (Two weeks later, on Thanksgiving Dinner with my wife’s family, I even ate a lamb chop, to complete the lamb story.)

Later on, I found out that Dr. DeMatteo was concentrating so much he didn’t have time for sending out a report to the family in the waiting room.  He found that my liver is healthy except for the part with cancer.  He had to remove 30% of one lobe, 40% of another lobe, but the ‘middle’ lobe did not have as much cancer.  So, overall, he removed more than 50% the liver.  But the rest that was unremoved was ‘healthy,’ in Dr. DeMatteo’s word.  My wife said he was almost gushing about it.  But while the family was waiting it was curious that there was not more news, they were just told that the operation is complicated.  The doctor removed less than 10% of the stomach with tumor on it.  He also removed the gall bladder since scar tissue in the future may make it hard to remove gall bladder at future date, if needed.  And for good measure, since there was adhesion of the tumor to the adrenal gland, he also removed the top third of the right adrenal gland.

I wrote this on Nov. 21, 2007, about 2 weeks after surgery:
“The surgery was successful in removing the primary tumor from the stomach and spread into the liver.  The doctor said they took out about 98% of the tumors - basically all they can see.  I was discharged from the hospital on Wed., Nov. 14. and have been recuperating here in NYC.  I went back on Gleevec on Thursday, Nov. 15 - which I may still need to take for the rest of my life to destroy the invisible, microscopic GIST cells that are there.  Today I went back for a follow-up visit to the surgeon.

At today’s visit, they took out the staples from my incision, so there is less pain now in that area.  The surgeon said I am making steady progress, and progress is measured in terms of how I feel better from one week to another week, not one day from another day.  I may feel better or worse than the day before, but a weekly measurement is more accurate.  I have been eating smaller amounts of solids this past week, but in smaller but more frequent amounts.  It is important that I put healthy nutrition into my body.

All of this is part of the process of learning about how my body works in recovery: how much food it can or cannot take, how much pain medicines to take or not to take, how much rest I need, etc.  So, there are a lot of little things that I need to learn about how my body is recuperating.

The surgeon said even though I should rest up 6 weeks after surgery, but it may take 6 months for me to feel as normal as I did before the surgery – in terms of doing all the things I used to be able to do.  In other words, I should not expect a dramatic improvement in how I feel right away, but allow the body the full time it needs to recover.”

On Dec. 6, 2007, 1 month after surgery, I wrote:
“I am feeling better compared to a week ago when we returned home.  I am eating more, drinking more, walking more (daily walks around the block with my wife), and sleeping better.  Overall, this past week has been an improving week.  I am coming along and resting.  Didn’t know recovery takes this long, but I am trying to be patient.  My next check up is Jan. 2 in NYC.  First though is the new CT scan sometime in end of Dec.  My surgery on Nov. 8 at MSKCC was not risky but it was complicated.  6 hrs. surgery.  I stayed at MSKCC for 1 wk, then was discharged.  I rested another week in NYC before returning home here in Maryland.  Fatigue is the toughest part right now.”

The recovery process was slow, but steady.  There were days when I thought the day was much too long, especially when recovering in the winter time.  I had time to write and reflect more and I wrote quite a few poems.  Here are a few of them:

Time Is Slow (Dec. 11, 2007):

“Staring out today at my backyard.  The branches of trees are motionless, the few leaves still hanging on are barely moving.  There is no sound of children on this Sunday morning, cars and busses are absent.  No birds on this grey wintry day.  The only thing moving is the squirrel looking for food.  It is on days such as this that a patient realizes that time is too slow.”

Days of Small Things (Dec. 12, 2007):

“My days are filled with small things.  Not big things.  I don’t have energy for that.  But small meals, small walks, short but many periods of reading, many small BMs, a few emails at a time, several naps, 8 min. exercises, a few ideas at a time, many sittings in chair thinking or not, short phone calls.  And that’s how my waking day passes.”

A Small Thing (Dec. 28, 2007)
“While you thought it was just a small thing:
To bring over a meal
Or send a get well card
Or offer a prayer
Or send a short email
Or a quick visit
Or bring over some fruits
 
It meant so much to me that someone:
Cared
Thought of me
Turned me over to God
Put down encouraging words
Made the effort to come
Took time to select something

No, it was not a small thing to me:
It gave me strength to go on
To fight for another minute
To battle for another hour
To push on for another day
To get better for another week
To become more normal in a month

And then to tell you in person how your little act:
Brought me back from the brink
Gave me hope
Made me feel more human
Made me feel loved
Made me believe that God is there
Helped to save me”

But time did pass, and by January, 2008, I had started going back to the office - a few hours a day - to start working.  I preached my first sermon on Jan. 13, 2008 and it was entitled, “Why Do People Get Sick?” based on Ps. 73:2-5 and John 9:1-3.

There were some not-too-serious complications after the surgery.  The most significant complication was a build-up of fluid in my chest cavity, which had been the cause of my shortness of breath when going up steps.  This pleural effusion was dealt with by draining of the fluid and the administration of diuretics.

By March I was working full-time.  In March I also celebrated my 50th birthday, and my wife threw me a surprise party.  At one point, I didn’t think I was going to make it to this birthday.

In May, my wife and I celebrated our 25th wedding anniversary and watched our second daughter graduate from college – again, at one time, I wasn’t sure I could make it to these milestones.

The latest CT scan report, which was at the end of May, was as good a report as can be expected.  There are no new lesions in the liver, the fluid in the abdomen (ascites) is gone, and the fluid in the chest cavity is almost all gone.  So, it’s good news.  My appetite is fine (I can eat everything, and have been able to do so since February) and my energy level is good.  I am still on Gleevec, and will likely be on that for the rest of my life, but I have no adverse reactions to it.  I will ask my oncologist next week if I still need to be on the diuretic.

I have been back to full-time work for several months now.  So, everything is falling into place.  I am very thankful to God for the recovery and the restoration of my health.

 

An Update Three Years Later - 5/28/2011

I had my regular appointment with my oncologist last week and he said my CT scan 2 wks. prior looked fine.  The images he saw earlier which had caused some concerns have now all been resolved.  I continue to take 400 mgs. of Gleevec each day.

He noted that I am coming up on 5 yrs. of having had GIST cancer – which is a significant marker for cancer survivors.  But, I am not only surviving; I AM THRIVING!  A pastor friend of mine is planning to write a book titled, “Real People, Real Suffering, Real Victory” and I will be one of the four people profiled.  He asked me to share my testimony.  I told my oncologist about this and he was excited to hear it too and how it can encourage others.  I am also working on another book project.

I am very blessed, humbled and deeply grateful to God for the life I have.  But if I were to go, I know an even sweeter place awaits me.  There is no loss involved for me – only gain.  What a wonderful Savior we have who has won my current life and future life with his own life!

As we continue to savor life, for our summer vacation, my wife Elizabeth and I will be driving out with another couple to Mt. Rushmore, Yellowstone, Grand Teton and Rocky Mountain National Park.  We will camp 6 of those 16 days and also take a raft trip down the Snake River.

Maybe I’ll post some pictures here after our vacation!

John Tung

 

 

 



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