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.