Trusting Your Instincts
6/7/24: Family trip to the Lincoln Park Zoo (Chicago, IL)
Where were we? Oncologist appointment done. CT scan showed everything looked the same, which is a good thing. I take this drug called Lynparza twice a day as maintenance therapy, so everything staying the same was the goal. My cancer tumor marker (CA19-9) was at 13. The normal range is between 0-35. Great!
We had a trip planned to Chicago that weekend to visit my mom. My brother, his girlfriend (fiancé soon if he ever mans up), their baby girl Oakley, my aunt, and cousin with her new baby would all be there too. I was so excited to see my mom. She had been visiting every couple of months during my treatment, so it was definitely my turn to make the trip. It would be my first time seeing her place in the city, where she works, and it would be nice to escape the Arizona heat, which was starting to hit the 110s.
Throughout the trip, my back irritated me a bit, but nothing too serious. After all, we were in the city, walking around all day. It wasn’t unusual for me to have some discomfort after doing anything strenuous. I hadn’t golfed in a long time because every time I’d go out, my back would bug me for a day or two. I didn’t work out because the last time I did, I had some hip discomfort for two to three days.
Though I wasn’t in any real pain, I knew something felt off. My body was telling me this was more than just a back issue. I had experienced this before. Looking back, when I had very minor back issues for over a year (before it got bad and there was any thought of it being more than a back-related issue), this is sort of what it was like. So while everyone was content after my last scan review appointment, it felt like déjà vu to me. I thought the CT scan and my CA19-9 being in the normal range would bring me peace, but it wasn’t enough.
When we got back home from the trip, I said to my wife that I wanted to get a PET scan. If it comes back showing no activity, then I will finally have peace of mind and can tackle the back issues. If it shows anything cancer-related, that would really suck, but at least we would be catching it in very early stages. This was a hard decision to come to terms with because sometimes not knowing is easier to deal with. And I had just gotten great news at my last appointment. Maybe it would be easier to live with that. But that’s not the situation I am in. In my heart, I knew something wasn’t right.
My wife knew I was serious, too. She knew that PET scans are not covered by insurance, so this would be $2,500 out of our pocket. She knows I wouldn’t be happy spending that right now if I didn’t feel it was absolutely necessary for me to move forward. I already had a good chunk of medical bills to deal with, and on top of that, we are actively going through the IVF process, which costs a small fortune. I couldn’t get my wife pregnant naturally because of the toxicity from the chemotherapy and the maintenance pill I was now taking. But we wanted a second child for sure. Now that I was out of treatment, it felt right. Emma was a big sister to two brothers, who she is very close with and they are best friends, and my brother and I have always been extremely close. He was the best man at my wedding. Emma and I wanted Ollie to have that too, so we were kind of hoping for a boy. But a girl would be amazing too. And we already had a girl name picked out, so there was that too. Anyways, I digress.
PET scan scheduled. It’s always very difficult to get an appointment quickly. I usually have to book my scans a month out. But when I said I was not going through insurance and paying out of pocket, I was able to get in the same week.
Friday afternoon, I did the PET scan. For three weeks now, I knew something wasn’t right, but I know all news is just news, not good or bad, just news. So whatever came my way, I would deal with it. It’s a weird feeling for me, having to be so even-keeled. Normally, it doesn’t take much to send me into a frenzy. I am not the most balanced person, to say the least. More all or nothing. But I know for my health (ironically) I need to stay as balanced as possible. Keep. Stress. Low.
I woke up early Saturday morning. I wasn’t expecting results so soon, but to my surprise, my they were already in my inbox. I couldn’t believe it. Emma and Ollie were lying next to me, still sleeping. I usually have my wife read my results and then deliver me the news, but I didn’t want to wake her as she looked so perfect lying there with our baby boy. I couldn’t wait for her to wake up, so I read them.
Pancreas - No evidence of recurrent primary malignancy at the pancreatic tail. In other words, everything looks good. Nice.
Liver - There is a newly hypermetabolic mass at the dome of the right hepatic lobe, consistent with a hepatic metastasis. In other words, fuck. What this meant was one of of the two lesions on my liver was lighting back up for activity, though it was the same size and still looked benign on the CT Scan.
There were four other bullet points that I didn’t care to read. I woke Emma up and had her read the report. I put my head into the pillow.
Everyone goes through their cancer journey with good times and bad times, different highs and lows, stuff that works for them and things that don’t. Things that are easy for some are hard for others, and vice versa. For me, chemo wasn’t terrible. Every time I sat in that chair during the 18 rounds of chemo, I remembered how much pain I was in before starting treatment and that once I started chemo, I really began to get my life back. Some days were hard. I would be fatigued at times. My weekly schedule, between family, treatment, and work, was all over the place. I lost my hair, which shouldn’t matter, but it just sucks. It’s the one thing that shows what you are going through to the outside world. I like to keep things in. I didn’t need everyone asking me how I was doing all the time. I thought if I had my hair, people wouldn’t be reminded every time they saw me.
The thing that made me sad though, was that I felt like I was letting people down. And no matter how many times I was told not to think that, and it was stupid to feel that way, I still felt like I was. After I went into remission, everyone would tell me how incredibly proud they were of me. Not that I cared about that. But now if I have to go back to treatment, it was back to “How are you doing? Are you feeling nauseous? Is there anything we can do?”
I knew if I was going back to treatment, my wife would have to take on an even bigger role than she already does, especially the day of and the day after treatment. She’s a beast though, no joke! But we were going through IVF. Our embryo transfer is literally scheduled for Tuesday.
I just got a promotion at work, and now I would have to have to tell my co-workers and clients that I am back in treatment. I know I will still be able to do the work. I worked every day through six months of treatment before. But I was scared my colleagues wouldn’t trust that I could get the work done. Let down.
I would have to tell my family and friends, and put stress on them again. I didn’t even want to call my mom and dad. If I could, I wouldn’t tell anyone. At least that is my first instinct. But I’ve learned through this process, you can accomplish a lot more when you have a strong support system behind you. And I am so fortunate to have a huge one filled with family and friends.
I am a wimp. I dodge, duck, dip, dive, and dodge a bee when one comes near me. To this day, I still squirm every time a nurse is going to stick a needle in me. I err on the side of caution with almost everything. But with chemo, I know I have no choice but to be tough. And positive. My doctor appointment is Monday. We’ll see what he says. Though, I have my suspicions about what’s to come.
Today, I am going to enjoy Father’s Day with my family. I don’t care to be celebrated, but I am happy to be spending the day with Emma and Ollie, then heading to the in-laws’ house for dinner. Steaks and the US Open. Sounds great.
I don’t know what tomorrow’s news will be, but I’ll deal with it then.
Obviously, there are a lot of negative thoughts going through my head, but I woke up this morning to a Father’s Day 2024 book full of pictures of Ollie and me over the last 21 months. I teared up looking at the photos. Thinking about what we’ve been through over that time, but never letting that stop me from being his dad. He’s really been liking watching The Lion King lately, and there is a scene where Simba says to his dad, “I was just trying to be brave, like you.” I can only hope Ollie feels that way about me.
One more thing I need to talk about really quick. I am not one of those people who goes around complaining about how our healthcare system is broken. But $2,500 for a PET scan?! I was diagnosed with stage four cancer less than a year ago. And insurance won’t cover a PET scan?! For those that don’t know, a CT scan shows images; a PET scan shows cancerous activity.
After making me pay $2,500 for what was deemed an unnecessary test, there was actually cancerous activity! I should get a reimbursement for being right. My CT scan indicated no change. No growth. No cancer. But me, with my zero medical knowledge—I mean zero—I still don’t even know where my pancreas or liver is located in my body. I knew I needed that PET scan, and thankfully I trusted my gut. “Be your own advocate,” my mom always tells me. And she is right. Be your own advocate.
If, by some miracle, the radiologist misread my PET scan and the activity is related to something other than cancer, that would be amazing. But it is much more likely that my next post will be written from the reclining chair at the treatment center.
Stay tuned,
Mikey
*UPDATE (6/17/24): Read the results of my follow up appointment on my third post, Just News.
