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.