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.”