Week 9 - Treatment Week 4 - Where Everybody Knows Your Name

Week off June 9, 2019

This week has been both profound and relatively dull. Rather than give a daily recount, I’ve decided to focus on two specific days. Monday and Wednesday were empowering and emotional days for me. To sum up the other days, Tuesday, Thursday and Friday were straightforward treatment days and were pleasantly uneventful.

At this point, I feel it would be helpful to explain the genesis of my adult relationships with doctors. In the autumn of 1987, my daughter, born with Down syndrome, was a few months old. It was recommended that her mother and I undergo genetic testing/counseling to see if either of us were carrying a gene for Down syndrome which might impact future decisions to have more children. After we were tested, the results were negative, we met with her ob/gyn to discuss the report.

We met at the doctor’s office in the early evening and he explained genetics to us using the “pair of shoes” analogy, fairly basic stuff. Our heads had been spinning for 3 months now as we acclimated to the world of Down syndrome and we were both taking in more information than we could possibly remember. When we finished our discussion, I extended my hand toward his and with complete respect and sincerity, I shook his hand and said, “Thank you for taking the time to discuss this with us, it’s been very helpful Mr. Waterford.”

As I began to loosen my grip on his hand, he brought his other hand over mine and began tightly grasping my hand, not releasing the handshake. He made sure I was looking him in the eye and he said, “It’s ‘Doctor’ Waterford.”

I was stunned. The only words I could get out were, “Oh, yeah, right.” That moment set a perspective for life as far as how I would interact with doctors. I made sure I would always show respect to them and call them ‘Doctor’ but I also vowed to never place them on a pedestal, ever. They are human like the rest of us, ego, faults, baggage and everything else.

So on Monday, I returned to the cancer center to meet with the doctors and bring them up to speed on the nightmare that was the previous week. It was possibly the most empowering moment of my life. I took control of my healthcare and didn’t look back. No regrets.

I began by telling two prominent oncologists, “Your communication amongst each other and towards me last week was completely unacceptable. You’re going to need to do a better job.”

From there I let the other members of the team know that I was going to be calling out any discrepancies and contradictions that I observed and all of them needed to step up and do better. The best part of this, they heard me. I’m pretty sure everybody knows my name there now. I hope by writing this other patients who were afraid to speak out will not hold back. Unfortunately I’ve come to realize that healthcare is no different than any other industry in terms of employees. There are those special people committed to doing a good job and others who go through their day blissfully ignorant to what is going on around them. Again, I know my naiveté continues to show, but I am who I am.

After I had my say to the team, we got back to the business of care. The most critical thing happening was my racing heartbeat. To rule out some things, I underwent a CT Scan. The results came back negative for anything serious and the mystery fever of last week may have been caused by a touch of bronchitis. I’m guessing the heartbeat issue may be related to the fact that I was perfectly healthy two months ago and now I’m in the middle of a heavy duty cancer treatment plan.

After sharing the results I was sent home and week 4 was well underway.

On Wednesday I returned for radiation and chemo, the first chemo since last week’s hospitalization. I was not only nervous, but as I shared with the team on Monday, I’ve become very emotional. I discussed this with my wife and told the team I was open to anything that would help me with anxiety. I’m not too proud to turn down help that’s available.

We discussed medications, therapy, and acupuncture. I let them know I was open to any and all. While receiving chemo, I was visited by the social worker. We talked about my emotional state and she asked if I had given myself a chance to have a good cry about my predicament. I think my response surprised her but she quickly put things in perspective for me.

To be clear, when I refer to being emotional, I’m talking about choking up and shedding tears. I’ve noticed that I’m not doing this in moments of sadness though, I seem to be wired to not cry over loss.

What is happening is I am profoundly touched by the outpouring of support and love from so many people who are in my corner. It overwhelms me. The social worker said, “You’re being touched by humanity, the love from one individual’s heart to yours. It is a beautiful thing. Embrace it.”

So I continue to feel a little sappy over the smallest gestures, even feel good stories that have nothing to do with me specifically, but I want to thank everyone for all of your kindness and thoughts and prayers. It is making a difference and keeping me feeling positive about my plight, it really is a beautiful thing. Thank you, I love you all.