My Journey with Cancer - Part 20

Dignity, Self-Respect and Facial Hair

You have heard it stated in numerous locations that cancer battles are a roller coaster ride. That is quite true. It has recently gone from my “good” diagnoses in July and August to the rapid descent down once the second regimen of chemotherapy was initiated to a fall that has allowed me to focus, live, sell our home, and move (more on those another time) to some scary indications of late. It is indeed a roller coaster. Let me share briefly about a “low” that most will not understand.

The first half of the year was a downward spiral health wise, continuing with the chemotherapy. It is quite hard to describe the feelings that come with the hair loss associated with the treatment. It is a visible sign to everyone you encounter that says, “I am sick. I am fighting a terrible battle. It is taking its toll on me and you can see it.” If you couple that with the water weight gain I dealt with, it was debilitating and demoralizing.

The lowest point in this journey for me, well one of them anyway, came on my birthday. We had made plans to go to dinner with my daughters who live in town, and their families. That same day I had been working outside power washing and painting my deck in preparation for the sale of our home. (Again, more on that will come later.) It was a 90+ degree day and I had pushed myself and worked long and hard all day to make headway on this task.

What no one knew, including Kay, was that I had another agenda. The afore mentioned hair loss, was quite humiliating for me, even though folks kept telling me how I wore the baldness well and looked good with it, whatever that means.

Here is the turn it took on me. I saw it coming, feared it, and knew it would be hard. I just did not realize how difficult. You see, I have had facial hair of one sort of another almost my entire adult life. I first wanted to grow a beard in my teens when I saw how good it looked on my Uncle Grady. As soon as I was able, I did. It has been various lengths, styles, and cuts. It has been a full beard most of that time, but a goatee was my choice for most of a decade. My phrase was “My chin had not seen sunshine since 1985.

This spring that changed. My beard fell out with the chemo and became more and more sparse. I did my best to keep it, but it was apparent by June I was fighting a losing battle. I made a new choice. I decided I had to bite the bullet and shave off what was left. I chose my birthday to do the deed.

When my family arrived to go to dinner, as previously mentioned, I feigned a miscalculation in timing due to working on the deck. It asked them to go on to the restaurant, I would take a quick shower and catch up with them. They obliged and left to get us a seat.

I went inside as I had stated to shower, but I also completed my plan to shave my remaining beard. I cannot fully describe what transpired. As I shaved and rinsed the razor I stood there, almost in tears as the last of dignity and self-respect flowed down the drain. To you, that may seem crazy, weak or ridiculous. I assure you it was not. It was real.

Now that I am on a new chemo that allows my hair to grow again, it is amazing to hear folks keep saying how good I look. It is the water weight gone. (I am at a healthy 175 now.) But more than anything it is that I have hair again. Most people do not realize that is what they see, but I assure you it is indeed real. I am also considering when I want to grow my beard again. That time is close. I want to be sure it will be okay in appearance of course, but I want to be assured somewhat that I will not have to send my dignity down the drain a second time in the same fashion.

My Journey with Cancer - Part 19

I am not traveling this path alone.

It has often, and quite accurately, been stated, “No one battles cancer alone.” Cancer battle are waged with the support of families, friends, acquaintances, employers, fellow employees, neighbors, churches or other organizations, medical personnel who try to be comforting while you are under their care, and whomever else is in that person’s life.

In my case, the primary supporter for me has been my wife Kay. She has seen me on days when you would never realize I am in the fight of my life. She has also seen me on days when I literally crawl out of bed to accomplish the duties of life that make life livable for me.

It is quite strange in some way how this journey hits each of us differently. Here is what I mean. If you were to ask me what were the toughest days for me in this journey? I of course would talk about the immense physical pain I have weekly and had in larger scale following surgery. But the two worst days for me would be the day the first doctor exhibited the courage last December to tell me that I indeed had cancer and it was in all probability, malignant. This was after other had skirted the issue the way you drive around a squirrel who darts into your path on the highway. The second day was the day of my surgery when Kay informed me that my surgery was a failure. (You can read that in another post, but it was in no way the surgeon’s fault here. By the time I had come around enough to be transported to my room from recovery, he had already gone home.) I think this could rate as Kay’s possible worst day, but I will leave that for her to decide. I was hurt (on so many levels) and confused as the what the future held. The third day for me, perhaps second, they all start to blur after a while, was the day the hospital oncologist shot straight with me and informed my that my cancer was incurable, and I could possibly not even see summer. That day as I sat there stunned, because there is no way on earth to prepare you for that. I simply do not care what anyone tells you, Kay walked around in front of me, put both of her hands on my shocked and staggering face and said, “Terry Mann, I love you!!” Since I am a touch and a words person (if you understand the 5 Love Languages) were the best suave my soul could have ever received. I needed to know I was loved, and someone cared. And she did that as good as she has ever done since we were dating, and she told me she loved me the very first time.  

Now for where I am headed with this. While the above days were surely difficult for her, there are two other days she has mentioned to me as painful.

The first day was in late May. During a visit with my primary oncologist I was sharing with her that there were some items that could kick in where I work once I had an official terminal diagnosis. I asked her when she could sign that. Her, and her assistant’s reply, very straight faced and caring was, “I can do that now.”

I learned later, that was one of the worst days for Kay.

A second event for her would be a month ago as we were driving away from our vacation home in Florida. We were both unusually quiet. I said to her, “This feels different to me. Does it you?” She looked straight ahead, and replied, “Yes. Because it could be our last one.” I could tell by the look on her face, and the tears welling up in her eyes, that the conversation needed to stop or our grandchildren in the back would notice and become uncomfortable quite rapidly. That was a difficult day.

There are two other events that include Kay, I want to include in this entry. In May, when my pain, and side effects were at there worst for the first regimen, she was talking to me after a particularly stressful day for her with family issues of multiple varieties not cancer related. Her comments went something like this:

You don’t know what I am going through. I know what you are going through. I fought serious cancer myself eight years ago, so I know what you are enduring., It is different on my side. Everyone asks, “How is Terry? What is the latest with Terry? No one asks how Kay is doing? You go off to work and get this energy from leading peoples and doing all this stuff then come home and can hardly move. On Sunday, you get in front of the congregation and you “turn it on” and everything looks fine. No one would ever know how much you are hurting. You just do your performance and your teaching, and you come home, and I must watch you barely alive. It is harder for me than you or anyone realizes.

That did hurt to hear. But it was honest. I recall I was very quiet and calmly looked at her and said, “You do know that I know what you are feeling don’t you? Just as you have been where I am, so I have been where you are.”

Our room was much quieter as the truth of that statement sank in on both of us. Something changed in our relationship that day and has remained changed. In truth, how any couples do you know who have walked the cancer path with one another? This list is quite short. Just as it was a privilege to walk it with her in 2010, it is a privilege to have her walk it with me now.

This leads directly to my second occurrence. And one that meant as much to me as the smoothness of her voice in January.

About 4-6 weeks ago we were leaving worship and my churches when I had preached in my present series. Now to be honest, (and a preacher who is honest will know what I mean here,) I was ON. I mean the message was good. The content was good. Folks were enlightened, they were challenged, they were engaged, they were emotionally in it. It was on of those times when you preach an you know you had it.

On the way home that day Kay said to me. “You were good today. I really mean that. You were good. I think you are my favorite preacher.” She paused a few seconds and I had nothing to say, because there could have been no better words for me. But she continued, “I know you are good at you job. You have a good business head. You are good at leading and changing organizations, and I can see how much you love that. But . . . PREACHING IS KEEPING YOU ALIVE!”

I do not have any idea what I said, but it was something like, “You are right.” I knew the conversation that had begun in difficult fashion in May, had come full circle. I knew without a doubt, she GOT me. Isn’t that what you want more than anything in a partner is for them to GET you.

She and I walk hand-in-hand into the uncertain future, but we do indeed know what one another is experiencing like few couples in this situation ever have.

My Journey With Cancer - Part 18

My Journey with Cancer – Part 18

May 12, 2018 – Overdue Update

In May I promised everyone an update on my status following my third CT Scan. That scan has come . . . and gone, and I had another one three weeks ago, so I think I am beyond overdue. I am reminded of that when many folks ask me when I will be posting another one, (BTW – I do not mind being asked to post an update. That reminds me that folks care.) All that to begin to say I apologize for being so negligent. Thins have been busy both in work, personally and medically with me. It may take a few posts to catch up, so let me get started.

May 18th, after obtaining insurance approval, I had my CT scan as I previously mentioned. I received the results on the 21^st. They showed no appreciable growth in the tumor and no appreciable expansion in the lymph node involvement. My oncologist’s remarks were, “I will take that as good news at this point.” This led to a discussion where we decided I would continue with my current treatment. That was a decision that would come back to haunt me.

I really cannot put into words how miserable the chemotherapy made me on a weekly basis. As a refresher, my treatment was three weeks on and one week off. By the time I was done with this regimen (a little foreshadowing there) I had had 15 treatments. It may not sound like much, but you give it a try.

This is where the story turns. To understand this, prior to this chemo I had not thrown up since 1979. I know. That sounds like a Seinfeld episode, right? That is because it is! In my case however it is true. I recall because I was in seminary and Alyssa, my oldest daughter was 4-months old and I was working the third shift in a steel mill to pay my way through school and support my family. Kay has always said I have a cast iron stomach. That changed in May.

On a Saturday in early May I took three of my grandsons to a monster truck show at a local dirt track east of my home. It began around 4:00 pm and continued until around 7:30 or 8:00 pm. The sun was hot, so I did all I could do to stay hydrated, knowing that was crucially important. I felt miserable, but that was not unusual for me. I had 4-5 days our of every 7 where I felt that way. We still had a ton of fun.

As we were leaving and walking to the car I began to have that feeling you get when you know you are about to be ill. I have fought that off every year since 1979 so I was sure I could do it again, after all I had done it since February this year.

I was wrong.

As I realized this was the real deal, I led the boys to the side away from people without them realizing what I was doing. I then threw up 10 times on the way to my car. Alyssa’s sons in particular were extremely worried and rightfully so. It did not end there. Over the next three days I threw up 20 or more times. This is worse for me than for most folks; at least it was then. Due to me surgical incision in January, the tension and force that your stomach endures when you throw up, re-damaged my stomach muscles, the muscles that had all be surgically severed a few months prior. It led to a return of the stomach pain that I had endured in January. To say the least, I was miserable.

At my next appointment, they changed my anti-nausea medication and although I have felt quite bad quite often, I have not had to deal with that level of nausea since. However, a new side effect took its place. Fluid retention became my undoing. As the nausea was lessening, I noticed that my toes, feet, ankles, calves followed closely by my thighs and finally reaching to my waist began to retain fluid. Despite everything over the previous three months, my weight had held at around 185-190 which pleased the MD greatly. However, this fluid caused weigh creep, finally reaching almost 215 pounds. At one point I gained 15 pounds in less than 7-10 days.

I had had enough.

I called and made an appointment with my oncologist and her CRNP the next day. (The next few sentences all took place over 3-4 weeks, but I am sharing them here at one time.) At the appointment, I was chided for waiting so long, but I am hard headed. I don’t know why folks keep trying to talk me into medical things early! 😊 I had test to determine there were no blood clots. I was prescribed a very very light diuretic that did absolutely nothing, and I was asked to do this and that to tough it out. The pain continued to grow. You see when you gain that much weight in one part of your body in that short of a period, you skin cannot keep up. I followed all advice with little or no avail. During this I took a trip to Chicago to be with my friends. It was a trip I really needed and enjoyed, hurting all the while.

Another side effect of the chemo – that coincided with the water gain – was severe numbness in my calves, ankles, feet and toes. While walking in Chicago I had to keep from putting myself in a position to run, because I had a tremendously reduced ability to control my feet. While walking I would have to remind myself to life the front of my feet. I was embarrassed so many times in public by stumbling when I would forget that. I never fell, but I came close numerous times. I had to learn to be slow . . . and anyone who knows me knows I would hate that!!!

I would venture that almost no one knew how much pain I was in 14-hours a day, because I would not let it out. During the spring I would many days come home from the office and spend the next 16 hours in bed because I simply could not get out. Kay and Gavin and occasionally Lori Beth would see me and know how much pain I was in. Well, Kay probably new all too well from just knowing me, and from her prior experience with cancer.

Prior to my trip to Chicago, I had met with my MD and we had decided in order to align with my upcoming vacation, that we would alter my next cycle of chem. Instead of 3-on and 1-off we were going to do 2-off 3-on 2-off then return to our previous schedule. While in Chicago I was in so much misery I knew something had to change. I tried sleeping in bed with five pillows under my feet for elevation. I had done 1 or 2 at home prior. I can honestly tell you, you cannot sleep like that. You just cannot.

I returned and kept my appointment and told them I was going to skip my next treatment entirely, that I could not endure this weight, leg and skin pain, loss of muscle control and overall misery any longer and was taking a break. In and odd exchange they said, we think if you miss this next Monday that will be okay. I responded with, “You do not understand. I did not come her to ask permission to skip. I came here to inform you that I was going to skip. I could not go on like this any longer and keep it from others as I intended to do.” They looked at me and said something about I need to take care of myself and not others. Or that I needed to turn off my pastoring at the churches and ministry and scale back my leadership, or some other foolishness like that and I gave them a bit of information about me.  I said, “I first knew God wanted me in ministry when I was 15-years old and told my Dad. While I did not get in ministry then, because my father could not get his mind around that, my calling goes back to that age.” I added, “I hear you about flipping that caring, assisting, preaching and leading switch off, but I have to inform you that switch SIMPLY DOES NOT EXIST. The day I throw that switch is the day I die, either emotionally or literally.”

The discussion was over. We started a new discussion.

That discussion meant an entirely new approach to fighting this disease. She gained approval from my insurance company for another CT Scan after only two months. This one showed again that the tumor had not grown since February. That was great news. It is still in my lymph nodes. It is still terminal. It is still metastatic. But it is not going away. It has not expanded further into my veins and arteries however and that is good news for the present.

She asked how I felt about a new pairing of drugs? Her words were something like, “We knew that at some point either the chemo would stop working or your body would no longer be able to take it. Well, apparently your body is done. I am quite impressed with how long you made it. Most folks don’t make it these many treatments.”

So where am I now? This Monday, August 13^th, will mark 8-weeks (count them, 1, 2, 3, 4, 5, 6, 7, and 8.) with no chemo. My weight is back down to 190 or less depending upon the day. My pain is lessened. It never leaves. I just live with it, but I can tolerate it I was able to enjoy my vacation with my family with less discomfort that I had anticipated. The swelling in my feet and ankles has subsided to about 85% of where it was prior to the swelling. My hair is returning!!  I told Kay on vacation, that I felt better than I have in a year ago when these symptoms started. But it will not remain this way. It is quite deceiving. If you did not know it, you would never know I was ill at all. But it is a faux uneasy peace in this war on cancer. At any moment it could fall off the cliff, go south, expand, spread, metastasize, pick your descriptor. I do have metastatic pancreatic cancer after all.

This Monday will also mark the beginning of my new regimen. This one is much different. For starters it is two new drugs. The former ones took 30-minutes each to flow into my chest through the port. The entire procedure would take about 3-hours each Monday.

The new drugs are different. The first on take 2-hours to flow into my body. At which time I must just be patient. The second one will be connected to my port through the normal chest needle I have been using, except they will seal it and connect me to a pump that will put chemo in my chest artery for two days. At which time a visiting nurse will meet me at my home or work and remove it. I will then wait two weeks and do it all over again.

I am not looking forward to all those side effects again (read losing my hair,) although my MD said she finds most patients can tolerate this regimen better. Kay told me it was the opposite for her, so we will see what happens since all bodies and all cancers are different.

Where am I otherwise. I am at the same place I have been, I keep plugging along doing what I do, living my life. While I was on vacation a gentleman tried repeatedly to get in touch with me at 3 of our office locations. When he expressed frustration that I was unavailable, one lady told him, “Sir, I am sorry you are not connecting with him, but he always makes connections in time as he should, but now he is out of town, and he is a very sick man to boot.

I know she meant well, and I was not offended in the least. I have a good working relationship with her. But I hated that last statement. One reason I push so hard to conceal what I feel and work hard to keep up is because I am more than a disease. I am given 12 months or so, but that is all a guess. I feel the fatigue starting to get me again at times, although not the last two nights. It is now 12:30 am while I am still writing, and I am preaching tomorrow morning . . . and it will be good! I know what I am going to say! (Late nights have always been my most productive work time, so that is actually normal. Go figure.)

If you have read this far. Thank you. Future posts will be more frequent and less lengthy, as long as I have energy. I have twelve new posts, not counting medical updates, written in part and ready to post soon, so stay tuned. They are quite good, if I do say so myself. My life is right where it has been all along, and right where yours is, completely in God’s hands.

My Journey With Cancer - Part 17

May 10, 2018 – If I Ever Stray

I have a date for my CT scan. After gaining insurance approval, that date is a week from tomorrow on May 18^th. It will be good to get the results and see what has been going on. This week’s round of chemo has been the worst yet. I keep plugging along with the help of  God and those who love  me.

On another sort of related note, while  listening to the Deep Tracks station on SiriusXM today I ran across a singer that I have no idea how I missed. His name is Frank Turner and a couple of his songs were quite powerful.  One of them was entitled  "If I Ever Stray." You owe it to yourself to listen to it on YouTube. The lyrics are below. They speak in many ways  to what I feel some days. Listening will be encouraging.

If I Ever Stray

Forgive me, someone, for I have sinned
And I know not where I should begin
And some days it feels like you just can't win
No matter what you do or say.

Things didn't kill me but I don't feel stronger
Life is short but it feels much longer
When you've lost that fight, yeah, you've lost that hunger
To pull yourself through the day.

But if ever I stray from the path I follow
Take me down to the English Channel
Throw me in where the water is shallow
And then drag me on back to shore

'Cause love is free and life is cheap
And as long as I've got me a place to sleep
Some clothes on my back and some food to eat
Then I can't ask for anything more

So come on everybody sing it one, two, three, four

We all have secrets that we hold inside
The worst little things that you never confide
And the worst one of all that you just can't hide
Is that you're never quite as strong as you sound

So I'm sorry baby, for the times I've hurt you
Sorry friends, for the times I desert you
Most days it feels like I don't deserve you
And I wonder that you're all still around

So if ever I stray from the path I follow
Take me down to the English Channel
Throw me in where the water is shallow
And then drag me on back to shore

'Cause love is free and life is cheap
As long as I've got me a place to sleep
Some clothes on my back and some food to eat
Then I can't ask for anything more

So come on, everybody, sing it one, two, three, four

Come on and join me in the water
Swim for hope
Sometimes it's hard to remember
I couldn't do this on my own

If ever I stray from the path I follow
Take me down to the English Channel
Throw me in where the water is shallow
And then drag me on back to shore!

'Cause love is free and life is cheap
As long as I've got me a place to sleep
Some clothes on my back and some food to eat
I can't ask for anything more

I can't ask for anything more

The path I chose isn't straight and narrow
It wanders 'round like a drunken fellow
Some days it's hard for me to follow
But if you've got my back I'll go on.
If you've got my back I'll go on.

               ~ Francis Edward Turner / Nigel Powell

My Journey With Cancer - Part 16

April 29, 2018 – Waiting

This past week marked the end of my third cycle of chemo treatments. I have now had nine infusions. That means tomorrow (Monday, April 30) is my day off. I can honestly say I need a week off in the worst way. This past week has been helacious. (That is a highly technical term that explains many things.) Ending this afternoon it has been on incredibly busy week on all front and the build up of chemicals in my system has begun to hit me hard. I may write about that in a future post, but not today. Since this is the end of my third cycle, I am due for a CT scan to see how/if things are progressing/regressing. I do want this information. After a call to remind them of this schedule need I will wait until this week to learn the schedule for the scan and the learn when I will know the results.

There is a word in that first paragraph that causes most of us to cringe just a bit. I am sure you saw it. That word is “waiting.” I am waiting. I do no really like waiting all that much, yet I have spent more time doing just that over these past months.

Waiting on the test

Waiting on test results

Waiting to see the MD

Waiting on the lab to complete work so they can begin my infusion

Waiting on the infusion

Waiting in the waiting room (Has anything ever been more aptly named?!)

Just waiting

You probably are somewhat like me. You do not really like the waiting thing either. If I am waiting, it means someone else is doing something and I am not. It means a loss of control. Herein lies the rub. We like the control, or at least the allusion of it. That is true even if we know we really are not in control, God is.

If I have had anything driven home to me over the past 6-months it is that fact. God is in control. I am not. God gives me freedom – within limits – to make decisions that affect my life and those I care about, but ultimately it is God who is in control.

It is nice know that the God who is in control of my life, and my waiting, loves me, cares for me, looks out for me, leads me, and likes me.

Guess I’ll wait a bit longer to see where this leads.

My Journey With Cancer - Part 15

April 9, 2018 – Third Sprint

Today marks the beginning of my third “cycle” (for want of another word) of chemotherapy. Each cycle includes three consecutive Monday sessions where sit for 2-3 hours while the chemicals are put in my system via my port. I have chosen 11:00 am to allow me the morning to get some work done prior to my infusion. (Don’t all Mondays have tons of extra things arise? Better to deal with them first.) Another factor is that Kay works until around noon each day and she comes to sit with me for the final 2/3 of the time.

As I said, today is my third cycle. It will end on April 23^rd. (Maybe spring will be here by then!) Following that final treatment I will have another CT scan to determine if the drugs are working. If they are, we continue. If they are not, we talk about a new plan.

God has been very real to Kay and me during these last months. That “realness” has shown in many ways, but one way it shows is in the responses from the two churches I am privileged to serve. (The non-profit has been quite gracious too, but that is another post at another time.) The churches have supported us with prayer, understanding, concern, financially, and grace. Most weeks in the bulletin at Deer Creek Church they print a prayer for the attendees to take home and pray for us. I thought many of you would find this week’s prayer encouraging.

Mighty and merciful God,

You sent Jesus Christ to heal our broken lives.

We praise you for that today.

Please touch Terry with your healing touch.

Make him strong and bring him good health.

Provide strength and support for Kay and Gavin,

Then all shall be renewed with vigor

And point to the risen Christ who conquered death

That we might live eternally. Amen.

My Journey With Cancer - Part 14

March 31, 2018 – Wear the Good Watch

Some years back I had the following story in my illustration file for sermons. It never actually made it into a message, but the story has impacted me on some level for many years.

As the story goes a son is preparing for the funeral of his mother. He is selecting the dress, jewelry and other items that will adorn her body as she lies in the coffin for family and friends to come to the final viewing. He selects the dress, the scarf, the necklace, and other items that will be the final clothes his mother will ever wear.

In the process of selecting the clothes, the son comes across a beautiful silk slip made with ornate handiwork and elaborate lace. His mother never wore it. It seems she felt it was so special she was waiting for the right event to wear it. As the son holds the slip, and lets his fingers trace the outlines of the lace he says aloud, “I guess this is a finally special enough event to wear this slip.”

The point hits me home every time I recount the story.

Now go with me to the Christmas season of 2011. At that time I have been living with the dream of leading an organization that grew to what we had all anticipated it could. The senior staff, all of which I was privileged to hire, train and work with were an incredible group of men and women. We were equally divided among gender and races. It was a beauty to be a part of. We had a representation of at least 50-60 other equally diverse staff among our area. But these individuals were very special to me.

I have never been one to have strong negative feelings about surprise gifts, surprise parties, and the like. I guess I always felt that if someone wanted to surprise me, why should I get in the way of their fun?

Our parent organization at that time held the usual Christmas luncheon, of which my staff was a part. As we neared the end of this lunch, one of my staff, said to me, “Why don’t all of us on your staff go somewhere and have something to drink and hang out together?” I was totally game, because I truly loved these men and women.

They suggested a location, or so I thought, and we all loaded up in our respective vehicles to drive to the agreed upon location. I was sitting at a high top bar stool around a table, when out of nowhere, Gavin (who was only 7-8 at the time) was tugging on my pant leg. I recall saying, “Hey buddy! What are you doing here?” I then saw Kay there and was even more surprised. Why? What? How?

After we ordered a drink, the members of my senior staff pulled out a gift to present to me and one to Kay. We were taken completely aback. They were matching Tissot timepieces. These were not watches. They were of a quality and price that I have never purchased for myself, and probably never would have. It still ranks as one of the top gifts I have ever been given, mostly because of what it meant.

Over the years since I received the timepiece, I have worn it only at what I would call dress up occasions. This would include, worship, banquets, and other important events. It was never my daily watch. I had one that was more plain and simple that I wore throughout the work week.

Now to today, as I recovered from my surgery and began my chemotherapy, began to go more regularly about my normal duties of the work week. Somewhere along that early time frame, I was getting dressed and reached to put on my normal weekly watch, but saw this incredible timepiece. I recall at that moment remembering the story I recounted above. As I thought about what lay ahead for me I said aloud to myself, alone in my bedroom, “Wear the good watch.”

From that day to this, if you see me during the week, on Sunday and anywhere that I would not fear the timepiece being damage due to my activity, I am wearing it.

I decided what am I waiting for? Celebrate every day! Every day is a special gift from God. Every day is deserving of the good timepiece.

Where is it in your life that you need to celebrate the gift that every single day is? Wear the good watch.

Two days ago my wife and I celebrated our 43^rd wedding anniversary. Wear the good watch.

Today on Holy Saturday, we prepare to celebrate resurrection on the morrow. Wear the good watch.

Wear the good watch!

My Journey With Cancer - Part 13

March 18, 2018 – Back from the Brink, con’t.

Here is my intention. Only a few folks find hearing what transpired from surgery to now interesting, so I am going to plow through this one from 30,000 feet for those individuals, then get back to making the blogging more current. I actually have already written the next one entitled “Wear the Good Watch” (you’ll have to read it to understand.) I will post it the day after this one. I have been busy since I have gotten back to work and life and ministry and dropped off here. I will do better.

Sound like a plan? Good. It’s what I am going to do.

I can say without any hesitation, that the seven days I spent in the hospital following the first surgery, were the most miserable nights I have ever spent. Now that is saying a lot since in the months leading up to the surgery when I was awake all most all night every night with the itching, I would dread nightfall every single day.

The morning following surgery I awoke with 7-8 differing tubes, IVs and other devices attached to me. I had an NG tube, a catheter, a side drain, an epidural, 3 IVs (two of which were still in place) and at least 2-3 other IVs over the next 7-days. They would remain a part of my body for the next week, in spite of me constantly asking how long before I could get them out. I must be honest and admit I may have been a bit pushy on that, but it was what was on my mind.

Sleep again became a constant elusive prey. It is difficult to rest when things are literally coming out of your body on all sides. I would lie awake at night for hours on end contemplating what was in front of me, what was taking place or just trying to get comfortable. On all but two nights, Kay was with me, sleeping on the sofa in my room. Hearing her across the room asleep (No, I did not say snoring!) became the most comforting sound in the world to me for it meant I was not alone. I know God was present, but having a human being present who cared for me meant everything! (Now, there is a sermon just waiting to be preached!)

I am joking when I say I would lie awake for hours on end, because the hospital staff did not allow that. I had my vitals checked every four hours, my medications administered, and other necessary interruptions that meant I was awakened every two hours all night. At 5:00 am each day my blood was drawn and sent to the lab, and by 6:30 MDs were starting their rounds to check on me which meant 4-5 MD visits. It was non-preferred celebrity status. If I did drift off to sleep, that was corrected in short order!

After a week I had pushed myself, and asked often enough, that I was allowed to go home. While I did not sleep more than 90 minutes at a time over the next month or so, I was at my home in my bed. I learned later when I found an online video of a portion of my surgery why that was the case. I was amazed to see just how much they cut me, how far they stretched the interior of my body, how many stitches and other procedures I cannot even describe were performed on me. After viewing that, I said “It is no wonder my entire abdomen hurts when I lie down, move or turn over. They did indeed “filet me like a fish,” as one friend put it. Gavin came in and saw me looking at the video and said, “Why would you watch that?” I laughed and said, “Well, I have over 90 holes/scars on my abdomen, I wanted to see what they did to put them there.” He shook his head and walked away.

As I tie up this “catch up” post here is the timeline from my 2018. My original scans (sonograms, CT Scans, and MRIs) were on December 1^st and 2^nd.  My first surgical procedure where I received my stint to begin to allow me some relief, and they took the biopsy of the tumor on my pancreas and a portion of my liver, was on December 4, 2017. I learned of my diagnosis on December 7, 2017 and met with my surgeon for the first time on December 11, 2017.

My major surgery was on January 9, 2018 with my discharge from the hospital on January 16, 2018. February 1^st I began easing back into work duties with a lot less stamina than before. On Friday, February 2^nd, I met my oncologist for the first time where we laid out our plan of action. The following Wednesday, February 7^th was the third surgery to install my port. Friday, February 9^th, one month from my surgery, I had a CT scan to determine two things. The first was to see how the tumor had progressed from my initial scans when it was discovered on December 1-4. Secondly, it was to get a baseline on where the tumor is at present and to see if there are any other signs of the tumor spreading other than the areas the surgeon found during surgery and removed.

I began chemotherapy infusion treatments on Monday, February 12^th. I have a regular routine of three weeks on and one week off with my chemotherapy regimen. Every three months I will have another CT scan to determine if the cancer has spread, to see if the tumor is growing, and if the medication is actually working. My CT scan in February showed no appreciable growth from December, so that is encouraging. This routine of 3-on 1-off with scans to determine progress as I understand it will continue until I my body can no longer take it, or it is determined that the chemotherapy is not working.

I have chemotherapy infusion on Mondays. I chose Monday strategically so I would have full energy at the beginning of the week, and again on Sunday when I preach at my churches.

In a future post I will write about what it is like to undergo the chemotherapy while living and enjoying life. For those who think that is morbid or just plain weird, you may feel free to skip those posts. Of course, I will not know!

Finally, for those who have asked me, I have been back at work for some time now, but it was not until the last week to ten days that I felt my stamina returning from the surgery. I knew that I needed to get back to doing what I enjoy doing and am good at in order to be fully alive. I was back preaching two weeks ago and was reminded that I was quite good at it, and enjoyed it immensely.

So, that is where I am. I will post any health updates as they become available. For now this is how I function and I am quite thankful that God has given me the strength and grace to continue down this road.

My Journey With Cancer - Part 12

February 24, 2018 – Back from the Brink . . . Well, Sort Of

My last entry here was the day before surgery, so I am way overdue for an update.

The past 5 weeks have been a complete roller coaster. Actually at dinner on Saturday, my wife said something like this, “You know I do not like roller coaster rides. I have hated them since we were dating. And I am ready for us to get off this one.”

A roller coaster ride is exactly what this time has been. It has been good news, bad news, no news, maybe good news, hope, minimal hope, and on and on. I knew where she was coming from.

How about since this is my first post-surgery update I share where we are? First things first, the surgery on January 9th was unsuccessful. It happened in odd fashion. The surgeon had told Kay and me that he would do a small incision to begin the surgery and explore around to be sure the cancer was contained to my pancreas. If it has had spread he would close me up and other measures would have to be taken by my oncologist. He said if the surgery was not to be, he would be out to see her in less than an hour. She did not see him for 3-4 hours and assumed all systems were “Go.”

They were not. What transpired during the next 8 hours was oddly inspiration. 

When the surgeon did the exploratory element, all looked good, so he began the process of disconnecting and removing body parts to begin the Whipple. As he put it to us, he “accidentally bumped against something in my large intestine area far removed from the area where he was operating.” It was far enough away he should never have noticed it or even been close to the area. He dismissed it as just some small area of diverticulitis and continued the surgery. In a bit he bumped up against it again and investigated only to find that the cancer had metastasized to a lymph node in the large intestine area. His words were “my heart sank and I stopped the surgery” because I had to. He said he had gotten “emotionally invested” us and was excited to help a pastor.

He left the OR and found a colleague who performs the same procedures to gain another perspective on how to proceed. They were in agreement that since the cancer had metastasized it would be pointless to put me through the full procedure. Another plan was devised. He had already removed my gall bladder and associated ductwork. The selected surgery has a name that eludes me now, but it involved taking sections of my small intestine, creating new ductwork for the bile in my liver to pass directly to the small intestine. He also rerouted my small intestine around behind my stomach so there is little or no danger of the tumor once again blocking the bile flow and returning me to the misery of last fall.

The surgeon found my wife and broke the news to her, which is not what she was expecting.

When I awakened in the recovery room, I overheard the nurses talking about me heading to room 869. I interrupted them and said, I was supposed to go to ICU. They said, there was a change of plans and I was going to a regular room. I immediately began to think the best. I thought (and said) aloud, “Things must have gone better than expected!” No one responded.

Within the next hour I was taken to my room where Kay and my oldest daughter awaited me. I recall vividly their struggle to get me onto my new bed home for the next week.

Kay and Alyssa quickly came to me. I recall the expressions on their faces as if it were happening at this moment. I remember saying aloud to Kay, “I am in a regular room. Things must have gone much better than expected.” She then had the unenviable task of telling me the truth. Things had not gone better. They had gone terribly worse. Unbeknownst to anyone, the cancer had spread and the outlook was much more bleak. We had no idea just how bleak.

Alyssa looked like she was going to burst into tears. Kay looked like a great burden had been lifted to share this news with me.

I will write again in a day or so, and pick up the story from here. Thank you for following me, reading, and the patience to hear the last 7-weeks. I will say, my life is right where it has always been, in God’s hands. In the power of the one who loves me enough to always have my best at heart.

More to follow . . .

My Journey With Cancer - Part 11

January 8, 2018 – D-Day Has Arrived

Tomorrow is the big day. We are to be at the hospital at 5:45 am for an 8:15 am surgery. I am ready to get this moving. I have always been the energizer bunny sort of person. I could often dare folks to keep up with me. Now the fatigue is real and regular. This is something quite new for me.

D-Day is the term I chose a while back and mentioned in an earlier post. It was the date of the Normandy Invasion. It did not end World War II, but it was the initial battle that led to ultimate victory. There we numerous battles, and skirmishes after that invasion.

I will have many more battles over the upcoming months, but the invasion is tomorrow morning.

Please know that we are all appreciative of the thoughts and prayers that have been extended our way.

I will write again when I am able. In the meantime, Kay will have access to my Facebook page and will post updates on that page.

God is good . . . all the time.

All the time . . . God is good.

My Journey With Cancer - Part 10

Symptoms, Tests, and Hope

Every story has a beginning. The story of my cancer journey begins several years ago, while the cancer cells were still small in number and microscopic in size. The story of my journey with cancer goes back to 1974.

1974 is when my wife Kay’s Dad had his first bout with cancer. He had an extensive surgery that involved, among other things, losing 75 – 80% of his stomach. He had a second bout 15 years later when he had his larynx removed and

The next major cancer event for us can in 2010. That is when my wife was diagnosed with Triple Negative Breast Cancer. We learned quickly that not all breast cancers are created equal. I have learned in the last month that not all pancreatic cancers are either. That is true for all forms of cancer. There are so many nuances that it is difficult for the untrained person to even keep up.

For those who are not as intimately connected with my family, here is what the journey has been like for us. It actually goes back 8-12 weeks when I began to have uncontrollable pruritus. That is basically itching all over my body with no relief from any and all attempts. I felt, as would most folks, that I was allergic to something so Kay and I set about to determine what that was. This meant changing body wash, shampoo, laundry detergent, medications, etc., with a 3-day time frame to try each. That took a 3-4 weeks before deciding it was not an allergy and I needed to get some medical attention. I called the Friday after Thanksgiving and made the appointment with my PCP.

By this time I was quite exhausted. The constant itching kept me up most nights. I was getting by on 2-4 hours of rest each night. The litany of symptoms I worked through would curl your hair. In addition to the pruritus, and fatigue I lost 20+ pounds in about 4-5 weeks and had many other symptoms I’ll not bore you with.

The Saturday before my schedule MD appointment the following Wednesday, our family was downtown Pittsburgh at the Christmas parade. I was sitting on the curb behind everyone, because I was so fatigued as was my norm then. Of course when you never sleep, it is easy to blame the fatigue on the lack of sleep. And it surely was a culprit in this mess. During that parade, my wife walked up to me, and said, “Look me in the eyes.” (Kay was a registered nurse in her first career.) She pulled my eyes open and said, “You are jaundice. I meant you are completely yellow. That is a sign of liver disease. You need to tell that to you doctor next week.”

That led me on another path. Liver disease is something I have witnessed in my good friend Craig. Both of us would clearly be non-alcoholic cases of cirrhosis if this were to happen. In Craig’s case, it led to a transplant.

As I researched I recalled many articles I had read where acetaminophen overdose has caused liver failure and death. I have taken a medication to help maintain a healthy blood pressure for nearly 20 years, so the only pain killer I could take for any sort of ache was that drug. I knew I had taken it for many years, but I tried to stick to recommended doses. I still wondered, “Was this the culprit?”

By the time my appointment arrived, I was so ready for some medical advice that I hung on his every word. The pruritus and fatigue had me to the point that I described it to Kay as being “absolutely miserable.”

In advance of that meeting my MD I typed out a list of everything I had tried and all of the symptoms I was having and my thoughts regarding the medication. I arrived at the office for my appointment and after being escorted back the nurse who took all of my vitals asked if I was okay to talk with the PA students first. I have seen 25-30 of them over the years, but today I declined. I just did not want to go through that litany twice. I said it would be fine if they are in the room while I was examined, but I just did not want two examinat

I have seen the same PCP for over 15 years, so he knows me pretty well, and knows I am no hypochondriac. When he came into the examination room, he “So, what’s up?” I

I simply handed him my list.

He looked it over, and then said, “Lie back.” He began to feel my abdomen, then called the PA over and said, “Feel this. Feel how swollen his liver is.”

To shorten this long story, I was given a lot of blood work and other tests and told to schedule a sonogram ASAP.

Before leaving he said, “This is interesting. And the one thing you don’t want to be in your doctor’s office is interesting.” That statement added a much needed bit of levity to a scary situation.

I called first thing Thursday morning to schedule my sonogram and received a 1:00 pm appointment on Friday to allow for needed fasting. Later that same day the MD’s office called and asked me if I had scheduled the sonogram. After informing them that I had for the next day, she told me, “Whatever you do, do not miss that appointment. The blood work and enzymes are showing lots of concerning levels.”

That evening my son Richard and his family were coming from Tennessee for a 4-day weekend visit, which I had lots of fun plans for. We went to my oldest daughter’s home and hung out with them for a few hours before everyone went home. They came over the next morning with fresh coffee and doughnuts. I had to decline until after my test, but we spent some time together until the sonogram’s scheduled time of 1:00 pm.

The location for the exam was just five minutes from my house, so that was a short trip. The test took 10-minutes and I was home by 1:30 pm.

I walked in the house, heated my coffee, grabbed a doughnut and prepared to enjoy the day as much as the symptoms would allow. Before I even settled in, I saw I had missed a phone call. I retrieved the voice mail, and it was my PCP calling me 15-minutes after the sonogram was completed. He left me his cell phone and said call him.

Kay and I went upstairs to the bedroom where I returned his call. We all know that your MD does not call to say, “Just checking in to see how the family is doing.”

He answered the call, and I experience the words I have stated in messages for years: “We are all one phone call away from our lives changing forever.”

His words were basically, “Terry, I don’t know what you are doing, but you must stop it and go immediately to the emergency room. We need a CT scan. The image is not as clear as we would like, but there is something going on that cannot wait. We are afraid you could go septic and with what we see, you may not last 24- hours.”

He had my full attention.

I said my good-byes, left for the hospital expecting to be back in a few hours. Kay did not even go since all of our kids were there, and I anticipated returning soon. I came home four days later.

At the hospital, they to lots more blood, performed the CT scan, and conducted an extensive interview with me which closed with something to the effect of, “You’re not going anywhere. We have to keep you. We are afraid of what may happen.”

The next morning I had an MRI where I learned I was a lot more claustrophobic than I thought! I have had one previously, but ever where I was completely inside. I can completely understand how some people can go stir crazy during those tests. The technician reminded me several times to be perfectly still, but remember I was still having this miserable itching over my entire body, so it was difficult to do.

Later that afternoon, they ordered another CT scan, this time with a contrast and came in with some vague comments about a “mass” on my pancreas. I was told that the reason for the itching was a “mass” was on my pancreas and was pushing on my liver and gall bladder duct work. It had bile completely backing into my bloodstream at 4-5 times normal levels. The reason nothing topical would relive the itching is because it was in my blood stream and thus pruritus over my entire body with not relief from anything. I learned this had my blood sugars at dangerous levels due to damage to the pancreas. The liver and gall bladder were struggling from the bile back-up which was dumping into my system and had now started to cause kidney damage.

I was a mess and had no idea!

Kay and I both thought they seemed afraid to use the word “cancer” because they danced around it every day from Saturday – Monday. Monday that did change.

I was taken down to have yet another test called an ERCP. (Google it, if you want to read the 15-syllable full name of it. J ) In essence I am sedated while a camera is inserted down my throat and throughout my GI tract. During the procedure a stint was inserted in the duct where the gall bladder and liver duct join, to begin to allow the bile to leave my system. It took about 10-days for it to be completely gone, but was most effective.

They also took biopsies of the liver and the tumor. (The surgeon who did the ERCP was the first person to use that word to us. If I were to do it over again, I would ask much more pointed questions earlier on.) We were told they would have biopsy results on Friday or Monday.

One odd note, I counted and as best I can tell, I was “stuck” 53 times while I was in the hospital. I think if I stood up and drank water I would have looked like the cartoon character with fluid shooting all around. J

The days following were busy and hectic. I had a friend (Thanks Stuart!) connect me with a good oncologist, who connected with the full Allegheny Health Systems team examine my case, and ultimately with my surgeon. I learned that I was indeed in the 20% who could qualify for surgery. It was pretty sobering to learn that 80% of the folks he talks to, there is nothing they can do.

The next day, when the surgeon’s office called me to get me into the office, I learned there was a “glimmer of a possibility that there may be a chance that there may be some prospect of hope.” I was in a lunch meeting with one of the divisions in my company. When I left I called Kay. I ended that call, and realized my eyes were full of tears.

With God, we live in hope and expectation. I still feel good about that “glimmer of a possibility that there may be a chance that there may be some prospect of hope.”

My Journey With Cancer - Part 9

January 1, 2018 – Asking the Wrong Question

Questions are funny things. Asking questions is how we learn. It begins with us as small children. We ask questions of our parents, our grandparents, our family members, our teachers, and others to expand our knowledge base and more so, to gain a grasp on the world we live in.

A key question we often ask as we grow is “Why?” Why does the sun come up? Why does the dog shake like that? Why am I not allowed to hold the special items on grandma’s shelf? The list of "whys" as a child goes on ad infinitum it appears to us.

As adults we are still basically children at heart. That means when something in our life goes in a direction we do not like, we ask the same question. We ask “Why?”

Why do I have to struggle financially?

Why was I the one to lose my job?

Why was my partner unfaithful to me?

Why did I get this illness?

There are many other “why” questions. But here is the rub.

IT IS THE WRONG QUESTION!!!

And you never get the right answer when you ask the wrong question!

If you can ask “Why me?” someone else could just as easily ask “Why not you?”

This is not new really. If you dig to the root of it, you wind up back at one of the reasons Jesus came into our world in the season we just remembered called Advent. One of the primary purposes of Jesus’ ministry was to show us just how messed up our view of God and our view of our world was.

How about some history? Jesus came into a world that believed and had believed for millennia that if you were wealthy it was because you had God’s favor. It was because God loved you. If you had good health, it was because God loved you more than those who were sick. To make matters worse, if you were poor, or ill, it was because you had sinned and God was angry with you.

Jesus came in part to turn that entire belief system on its head! God’s love for you, or God’s pleasure with you and your behavior have nothing whatsoever to do with your wealth or your health. God loves you . . . period. End of sentence. All nuances and other discussions get in line after that statement.

An interesting side note here lost in the Christmas story, Jesus was actually poor. Jesus was born into a family so poor that when the Joseph and Mary went to the temple to offer the obligatory sacrifice for purification following child birth, they had to choose the poor person’s option. “If she cannot afford a lamb, she is to bring two doves or two pigeons.” ~ Leviticus 12:8. Joseph, Mary and Jesus were poor. Let that sink in for a minute.

Okay, back to my comments and how it relates to my cancer diagnosis and upcoming 8-9 months of surgery and treatment.

I have not – for a single minute – asked “Why me?” The answer as I stated earlier could be “Why not me?”

We live in a world that is not redeemed yet. One day God will restore his creation, but that has not happened yet. That means there are some things in the world that are bad. They simply are. Cancer is one of them. It is bad. But it is my reality.

Do you know why our oft misinterpreted verse of Scripture (like Romans 8:28) talk about God making things work for good? It is because some things are simply bad. Death is bad. Sickness is bad. Poverty is bad. Abuse is bad. God must work to make them good; because they are indeed bad.

I might throw in here that I also do not believe the line, “God does everything for a reason.” What kind of abusive, hideous God would make a child ill to do good? God is not “bringing bad to do good.” Bad happens in this world. God then works to make it good. Sometimes we see how in this life, sometimes we do not. God lets things play out in our world because among other things, God gave us free will too choose. Sometimes those choices lead to bad outcomes that require God’s redemption.

Okay, I am starting to sound like a preacher here. Oh . . . wait . . .

Actually, we have not strayed too far from that heresy have we? You can see it on the television weekly. There are people who tell you, even today, that if you are sick or short of money or in relationship trouble, it is completely due to your lack of faith. In other words, it is your fault.

When I studied Greek and Hebrew I learned that both languages have the same word to describe that belief . . . BALONEY!

I do not have cancer because God is angry or disappointed with me.

God was not angry at the 10-year old boy that my wife taught in preschool who died on Friday of brain cancer.

God is not angry at you or mad at you or punishing you. If that is your view of God, get a new one. You need a new God. That one is clearly not working for you.

God is for you.

            God IS for you.

                        God is FOR you.

                                    God is for YOU.