My Cancer Journey - The Next Steps

 

On August 5, 2023, I woke up at home for the first time in ten days. It was lovely not to be awakened to have my vital taken or my roommate buzz for the nurse at O’dark early. 

The most significant adjustment was feeding myself through the tube. However, even that was becoming a habit, even though it had only been a few days since I used it. I worked out a schedule to do three feedings a day.

I was also looking forward to the upcoming oncologist appointment. I had roughly figured out his fist moves, chemo port and a PET scan. These were two steps that Valerie had done before her first actual chemo treatment. I spent the remainder of the weekend resting and getting some of my strength back. Having not eaten much since mid-July, my strength and energy level were at an all-time low. My weight was also below what I had been in high school. I bottomed out at 158 pounds, which was down from 240 pounds. 

On Monday, we went to see my oncologist, and it was refreshing to see the old faces of him and his nurse. Not only were those two there, but his old PA had also returned to the practice. I hoped I would never have to see any of them again, but having them for my healthcare team meant a great deal. 

When the doctor came in, he was pretty blunt. Being stage four in cancer is terminal. There is no cure since the cancer has moved from its original location to a secondary location. He outlined the suggested treatment: chemo with immune therapy every two weeks. Yes, doing treatment was totally up to me. But he told me without treatment, I had a few months. But with it, I was looking at years. I told Valerie I would see Lexi make it through high school, so yes, I was doing treatment. Not doing treatment was never part of the equation.

I was told the next steps would be a chemo port and a PET scan. The PET scan looks at the body on a cellular level. It uses a radioactive tracer to view every place cancer could be. The CT I had gave a rough overview of where the cancer was. I spoke to the doctor about possibly going back to work. Again, he was rather blunt and honest. He told me the cold, hard truth: I would be in treatment for the foreseeable future, and it would be best for me to apply for disability.

Honestly, I was not expecting to be told some of the things I was on my first visit, but at the same time, it made my resolve far more resolute. 

On August 10th I had my chemo port implanted. This was an odd procedure since I was awake the entire time. My chest was numb, and I was in a very dazed state. One of the drugs they gave me was fentanyl. Yes, you read that right. I joked with the PA when he told me about that. He laughed and assured me they didn’t “buy it on the corner.”

As I was lying on the table to have the port put, the nurse covered my face with a towel. I could feel the pressure on my skin as they cut into it. Then I could feel tugging as they put the port in and fed the small tube under my skin to the vein in my neck. Yeah, it was a little strange feeling. Things went quickly, and I was back in the car riding home before too long. 

Back home, it was time to rest and let the pain from the waning anesthetic come. I called my mom and texted my sister, letting them know I was doing well. The time for my first chemo appointment was coming quickly, Monday, August 14th. Little did I know that I was also around 24 hours from having my life thrown into a major loop.

My Cancer Journey - The 9 Days

July 27th, 2023, began like many other days for me. I woke up and went to work. I knew I had cancer and planned to let my co-workers know that morning. I was having issues swallowing water that morning and had told Valerie I would probably leave at lunchtime so we could head to the ER. 

I informed both the Engineering Manager and Director of Engineering about my diagnosis. They then let everyone know we had a quick meeting. This was when I let them all know what was happening. I did not know much about what would happen since I had just found out the day before. 

My original plan was to undergo treatment and still work. I did get choked up a couple of times while telling them. I finally contacted my gastro doctor, who emphasized the need for me to get to the ER. So, I left at lunch and drove home. Valerie and I then headed to Gainesville for the ER. That particular hospital is the best one in our area. They are cardiac specialists and have a clinic for the cancer center at North Side Hospital. I knew I was in good hands. 

When we arrived, there was a short wait before I was taken back so the testing could begin. Of course, plenty of blood was taken, and then a CT was taken. While waiting for results and to be admitted, we sat in our little cubicle, observing the people around us. 

Now, this following exchange was a double slam. This doctor, whom I had not seen, walks over to us. He makes sure who I am and, in a rather shitty manner, tells me I have stage four cancer. This was the first time we had heard about it spreading to my liver. His demeanor was just as shitty as his delivery. Then he walks away, leaving us to reflect on his crappy delivery. Later, the doctor who had seen me came over to tell me the news. He was far better with his delivery. The following day, after I had been admitted, the house Doctor came by to tell me again. She had the nurses leave the room and sat on the bed to tell me. She handled things well and was unhappy when I told her about the first guy. 

Not much happened during my nine-day stay in the hospital other than waiting. I did have a feeding tube inserted into my stomach and was started on my liquid nutrition. Most of my time was spent watching TV and getting blood drawn. My blood sugar was a constant issue since the IV fluids I was also on were dextrose-based. 

Getting the feeding tube was a little strange. They took me down to the interventional radiology group. They use a live X-ray to guide them in what they are doing. I had a tube inserted into my stomach through my nose. This was used to inflate my stomach. I was very much awake during the whole procedure but was feeling very dopy, so I didn’t care what was happening. A larger needle was then poked through my belly into my stomach. The feeding tube was inserted, and two stitches were used to hold it in place. 

While I was gone, my sister-in-law Judy showed up. She and my brother live about 30 minutes from the hospital. My brother was in Alaska doing a summer job driving a bus for a resort. He does that since he is retired. Judy is a nurse, and it was very nice to have her come over. I would have to wait twelve hours before the liquid nutrition would go through the feeding tube.

Later that night, my stomach began to wake up and started moving. The tube, being new, was a source of some intense pain. That pain was brief but intense while things were starting to return to normal. When it was time to start the nutritional liquid, I made my nurse laugh. He was hooking up a large liter bottle of the liquid through the IV pump. I looked at the bottle and said, “I’m not a fan of chocolate. Is there another flavor?”

He paused momentarily, then started to laugh, and so did I. Laughing was a little painful due to the tube. He had a big smile and said, “That’s a great attitude.” Humor and mental sharpness are essential at all times. 

Now, to some of the business side of all of this. Cancer is expensive to treat. I have access to the VA medical, but there are specific rules to follow when using their system. I am lucky, in this instance, because I live outside the limit that would force me to either do treatment in Atlanta or Ashville, NC. But, to get to use a doctor of my choice typically requires a request ahead of time. I was going to go through the process backward. 

I called the VA and let them know what was happening. Since I am already seeing a therapist for depression and PTSD, the VA knew I was eligible for community care. That is the care outside the VA. I also made an appointment with an oncologist who practiced with Dr. Kallab. He is the doctor who saved Valerie when she had breast cancer, so I wanted him. I was assured by the lady in Atlanta they would get me set up for community care for the cancer treatments. 

As many people can imagine, the VA typically can drag its feet. I know some veterans who have waited long to be seen, so I was worried. But, two days after I called them, I got a call from a nurse at the oncologist. She was the same nurse he had in 2007 and remembered me. She told me I would see him and set up an appointment. She also told me the VA had been in contact with them. Later that day, I was called by the VA and told I was approved for community care for one year for the treatments. Two days!!!! Two freaking days to get me to see who I wanted. Talk about a massive emotional boost. 

Then, the other boot dropped with the VA; ordering my nutrition fluids took them a little longer. That delay kept me in the hospital for a few extra days since I could not go home until I had supplies there.

Eventually, I was taken off IV fluids and started to do my feedings through the tube using a large syringe. I was in the hospital from July 26th to August 4th. I had been through an emotional wringer since finding out I had cancer. I was now a person with stage four cancer and needed a feeding tube to meet my nutritional needs. August 7th was my initial appointment with my oncologist. I was both excited and scared to see him. I knew treatment was going to be my only hope. But, I had confidence in him and his team. 

All the while I was in the hospital my mom kept calling me. I had called her and told her about my diagnosis when I found out on July 25th. That was a hard call to make. Some things are hard to do over a phone call, but I had to do it since she lived in Illinois. When I found out I had stage four cancer, I wanted to tell her in person. So, I was making plans to do that. 

When I went home, my mother-in-law was hesitant to cook. She made supper for us every night and always had cookies or other treats. She loved cooking and was worried it would bother me to smell the food. Before I started on the liquid supplement, smelling food made me hungry. I was starving myself before the tube was inserted. But, afterward, food didn’t bother me nearly as much. Yes, I did miss eating and wasn’t sure if I would ever get to eat again. I spent the weekend resting and getting my mental state focused on the coming fight. I will go into more detail in the next part. But let me say this: my plans went to hell after my first conversation with my oncologist. 

In the immortal words of John Paul Jones, 

“I have not yet begun to fight!”

 

My Cancer Journey - The Beginning

July 26th 2023, is the day I heard you have cancer. I have been thinking about writing down my thoughts and feelings about my journey for a while. I am not sure what I will get written, but I will do it. This will end up being a multi-part sort of post. 

Going back almost a year to July of 2022, I noticed I was starting to lose weight. At the same time, I also began to see and be treated for my diabetes by the VA. I attributed this weight loss to the medication I was taking at the time. I also noticed that I couldn’t eat as much as I previously could. Again, I put that as a side effect of the medication I was taking. Was that the case? Were those both side effects from medication, or was it the cancer starting to grow?

I need to rewind a few years to a trip I had taken to my mother-in-law's house in Panama City. She made some fantastic steaks for dinner, and I eagerly enjoyed mine. I was so eager that I cut off a piece too large and did not chew it properly. The steak became stuck in my esophagus, so Valerie took me to the emergency room. The doctor who removed it stated he thought I had Barrett’s Esophagus. This was later confirmed and treated. I was also told I had a Hiatal hernia.

Now, jumping back to the present, in late 2022, I noticed I was having an issue swallowing food. I thought this was the Hiatal hernia acting up again. So, I made sure to chew my food well and also take smaller bits. I was also losing weight slowly. 

From January until early May, I lost weight and was still having issues swallowing. Early in May, I actually had part of a grilled cheese get stuck and not allow me to swallow anything. I went to the emergency room, and eventually, the blockage broke loose. I made an appointment with a doctor to get things looked at. However, the doctor canceled the appointment a couple of days before that appointment. They claimed there wasn’t anything the doctor could do for me. I tried to get another appointment with a doctor I had seen before. I explained what was happening, and they made an appointment for me in three weeks. 

I had an upcoming appointment with the VA and made another appointment with a gastro doctor. But these weren’t until late in July, early June. I was not able to eat much at all at this time. I was still able to drink whatever I wanted, but eating was getting worse. I also started to drop weight faster at this time. 

I admit I was slow to react to my initial problems, and hindsight proves me correct. Would my cancer have become so bad had I gotten help sooner? Who knows. Had I gotten help sooner, I might not have gotten to see the oncologist I have now. So, I will not beat myself up for my lack of urgency. 

I finally got to a gastro doctor on July 25th, who scheduled me for an endoscope on July 26th. I could not eat or drink after midnight, and the procedure was scheduled for the afternoon. Needless to say, I was a little dehydrated when I finally was being prepped for the procedure. The endo was done, and while waiting for the doctor to give me a run down, I was upbeat that he had done something to allow me to swallow. 

Well, that wasn’t the case. The doctor came in with a somber face and told me that I had cancer. We discussed the next step, and I told him I would only see a specific oncologist. This was the same doctor who had treated Valerie’s cancer back in 2007. I was happy to hear that was the doctor I would get a referral to. I was also told there was a blockage still, and if I couldn’t drink water the next day, I would have to go to the emergency room. A slight shock: I had to go to the emergency room the next day, July 27th.

While there, I had a CT scan and some other tests. After the CT, I was given some shocking news: I had stage 4 cancer. The cancer had spread to my liver, and there was a small tumor near my belly button. Talk about getting a significant gut punch. This emergency room visit led to a nine-day stay in the hospital. 

Needless to say, my emotional state when I was wheeled to my room the night of the 27th was beyond words. Getting a cancer diagnosis is bad, but being told you have stage four cancer is the worst. 

Not only had my world been turned upside down, but so had my families. Believe it or not, things were about to get far worse for me and my family. I will talk about all that as I go forward. 

But, know this!!!!! Valerie asked me early on where my mind was. She wanted to know if I was going to fight. My reply was direct and honest. I said, “Fuck yes, I’m going to fight.”