On Easter Sunday – April 9^th, I made a decision as I went to bed.  I was going to wake up and go to the gym.  No matter what.  I had to send the message to the cancer inside me that I was in control.  I would not be its victim.  It picked a fight with the wrong person.  Monday morning at 6:30 am – before the sun was up, I walked into the gym.  By no means was the workout intense – some treadmill walking, stretching, and 3 weight machines.  But I sent the message that needed to be sent.

That set the tone for a great week.  I was feeling better than I had in a long time.  The simple shift in mindset made a world of difference.  I made it to the gym again on Thursday and my energy was 100 times better than it had been before the hospital visit setback from a few weeks prior.

On Saturday morning, April 15^th, we woke up to some very encouraging news.  The results of my blood tests from the day before were available to look at online.  Our oncologist had ordered a CEA test.  That’s a test that indicates tumor markers in the blood.  For a healthy, non-smoker, the level should be at or below 2.5.  When I was tested in February, my score was 41.9.  Less than two months later, after 3 rounds of chemotherapy, the level was 10.5.  It was worth a celebratory high five, but not much more.  It meant we’re trending in the right direction.  But a win is a win.

The following Monday we had our appointment with MD Anderson for a second opinion.  We weren’t sure of what to expect.  We felt good about our current course, but it would be stupid not to get a second opinion from “the best cancer treatment center in the world” when you live 25 miles away, right?

The oncologist came into the room, explained that she had been reviewing my bloodwork along with the  CT and PET scans that I had provided.  She began talking about treatment options.  For one, we could stay the course with our current oncologist.  She had looked at what we were doing and said that would be a decent option.  She said we could choose to be treated at MD Anderson where they would try some different combinations of chemo drugs.  She said a third option would be to apply for a phase 1 clinical trial – Phase 1 being the human testing phase.  And the fourth option, if all of those treatments were not yielding results, would be to start discussing comfort and hospice.

Wait, What?

My wife and I looked at each other with disbelief.  The oncologist elaborated basically saying Stage 4 metastatic cancer is uncurable and all you can do is try to buy as much time as possible.

I mentioned the recent CEA score and she said it’s just one indicator, and not a really good one.  I mentioned how far it had come down since February and I think she muttered that she hadn’t seen the previous number.  I started to ask about expectations for our situation and quickly changed my mind.  We didn’t want to hear anymore of what she had to say. 

While we appreciate a doctor not “sugar coating” as she said about seven times, we were a bit dumbfounded with the whole situation. We told her for the time being we would stick with our current plan and circle back if our next round of scans dictated that we should.

But we got what we came for.  A second opinion.  All of what she said could be of value to the amazing oncologist that we are working with.  When I say amazing, it’s not an exaggeration.  Anytime I tell medical people who my oncologist is, the response, if they know of her, is “you got the best.”

When we got home, the MDA doctor’s notes were available to me.  I downloaded them and emailed our awesome oncologist, along with a note as to how taken aback we were.  A short time later, we got the most reassuring response you could imagine.  She told us that she believed our treatment was working, that the scans being read were early in the process and done when I was in the hospital for an infection.  She said the other drugs recommended were on her radar pending the next scans and would be administered if needed.  She also said that MDA Oncologists are heavy into research and typically see patients with few options left.  She even had nice things to say about the MDA doctor we saw.  She also said that in her experience of being in it for the long haul with her patients that she had seen great results.  No, the cancer in me may never completely go away, but it can be managed like a chronic disease.  She really is the best.

So where does that leave me and my mindset?  Well, these are the things that I know.

1. I’m a firm believer that everything happens for a reason.  It may not be clear at first and you may have to poke around to find it.  That second opinion was absolutely necessary.  It did provide valuable information for us and our oncologist. At some point it will come back into play in a positive way.
2. I cannot spend time thinking about the MDA doctor’s words.  She said what she said.  But if I buy into it, nothing good will happen.  We got our second opinion, and I got a whole lot of motivation to prove someone else wrong.  Here is an excerpt from the MDA notes.  It’s already on my bulletin board.
3. This all serves as a reminder that the situation is serious.  After the hospital stay at the end of March, I let up on my diet.  I started eating for energy.  I had lost 40 pounds and not all of it in a good way.  I know now that I must be more diligent.  I have some control over feeding the cancer and I have to do my part.  It takes what it takes.
4. We are very lucky to have the oncologist that we do.  I could say that I don’t know where we would be without her, but we were clearly meant to be in her care, and that should not be questioned.
5. Our winning attitude and mindset cannot let up for a second.  For a long time, I questioned the existence of a higher power.  That is no longer the case.  The hows and whys are material for a future blog.  There are things that have happened over the past year plus that have screamed at me that it is absolutely real.  All I had to do was wake up and believe.  According to the MDA doctor we need a miracle.  Challenge accepted!
6. There is a lot about our situation that the MDA doctor doesn’t know.  She doesn’t know me.  She doesn’t know my strength, attitude and mindset.  She doesn’t know that I am a resilient SOB that refuses to give up when the stakes are important.  And she certainly does not know about all of you.  I mentioned it in the first blog, but the support we have been gifted is unbelievable.  The amount has to be in the thousands of people by now.  I’ve lost track of the number of people that tell us that not only are they praying for us, but they have stood up in churches, prayer groups and asked strangers to pray for us as well.  That power has already brought the tumor marker number down about 75%.  We are very lucky to have all of you thinking about us and pulling for us.

I mentioned that everything happens for a reason.  That opens the door to the questions, why this? Why me?  I don’t know the answer yet.  But I believe that this will be the experience that finally allows me to believe that I can truly impact people on a much higher level.  It will erase every doubt in my mind that people will trust me to help them when they are struggling. 

Well, to be honest, for the most part, it already has.

On April 21^st, my wife and I joined her aunt and uncle at a campground for our first RV trip of 2023.  We had previously cancelled four different trips due to procedures, appointments and even the hospital stay.  Not only did we make the trip, but we also did it on the week of chemo treatment.  Less than 24 hours after having the needle removed from my chest, we were packed up and on the road.

We are in control.  Not the disease.

There’s a great quote from the movie The Shawshank Redemption.  “Get Busy Living or Get Busy Dying.” 

You already know our choice.