Ignorance was bliss

I grew up accepting things as fact that aren’t true. We all know the rhyme, “In Fourteen Hundred and Ninety-Two, Christopher Columbus sailed the ocean blue.” Just repeating this aloud, harkens me to days of yore. Ignorance was bliss. We were taught about how Columbus was a hero who “discovered” an inhabited land. Just writing that sentence is paradoxical. In reality, Christopher Columbus was a rapist, murderer, and slave trader who also did some exploring on the side while bringing diseases and a few fruits. I don’t write this as part of an essay on my “woke” culture. I questioned nothing. I regurgitated whatever teachers, parents, ministers, the government, and doctors told me. I attended a speaking engagement this week. The speaker, who’s daughter attends a private girl’s school, said there are two words upon entering the school: Question Everything.

Prior to my son’s diagnosis, I had no reason to doubt the competency of The Cleveland Clinic (CCF). We oft heard, “If you’re going to get cancer, you’re in the right city and hospital.” Why would we have doubt? CCF is ranked in the top 5 (top 1 & 2 in most categories of several ranking publications) nationally. It’s hard to receive an email from them without them letting you know just how great they are. So, once again, why doubt?

Jacob received excellent care from most of the staff at CCF. The “people” working at CCF are excellent. Jacob loved his team of doctors, nurses, PA’s, NP’s, PCNA’s, food staff, cleaning staff, and many more. The “red coats” do a wonderful job of welcoming people in their (non)profit center. The entrance in valet is massive and inviting. Banners across the hospital remind visitors just how great they are. There is no way to doubt, this is the best place on earth. If you’re going to get cancer, you really want to be here. So, I thought. I’ve written many times about the issues Jacob (and we) encountered in his two+ years receiving a P.T. Barnum like “Best care on earth.” In respect to my wife, I will not delve into this further. You may research former blogs for review.
On February 10, 2021, I wrote a letter to Brian Bolwell, the head of CCF’s Taussig Cancer Center. I wrote of terrible gaps in the care for Jacob. I prefaced that I was not litigious not bitter. My only wish was to see change in how they care for patients and especially, how they transition leukemia patients to bone marrow transplant. Dr. Bolwell replied to me, along with multiple members of Jacob’s oncology team. The emails were filled with contrition and regurgitated replies of changes that will be made. Each doctor wrote about how this was a “special circumstance”, and they were happy to review the case.

I don’t want to review his case. I don’t need to “review” what I experienced. We exchanged a few emails over the month. I even started to get some hope that changes would be made. I was wrong. Jacob was forgotten. I wasn’t heard. Things went back to the same processes as before. This week, I made another effort. Why? Because I owe it to the next cancer patient that walks into a hospital. Jacob won’t let me fail. I sent the same group of doctors another email, along with attaching previous emails. I made one major change. I sent copies to a friend of mine at another hospital(s). My phone rang within the hour. His voice was shaking, and he was nearly in tears.

He was shocked at my willingness to want to help the next patient. Apparently, it’s rare what I wrote. Most people are contacting doctors with lawyers present. “You just want to make changes.” He’s right. Jacob is a powerful person. I accept his death as it is. He is bigger than his own life.

Jacob often laughed with his doctors that he could do their job. He could look up the protocols and make a chemo schedule. He knew how to assess blood tests. Over two years of blood tests, he knew the meaning behind every level. He also understood the bullshit. We found out too. It took a little longer for me.

Patient care is a fallacy driven by a moving cog called Big Pharma. Any hospital that claims to be “number one” in is lying. Marketing teams and paid publications drive us to believe the hype. Our bodies are legal tender for these profit centers. I don’t blame doctors and don’t want this to look like an attack on them. They have incredible responsibilities and stresses. When I was young, I thought doctors were larger than life. They solved all our physical problems. My doctor, typically an old, white male, would come into the office. I felt at ease. I was given meds (not a script. They used to have actual “samples” in the office), and I was “healed.” Life seemed easier. Ignorance was bliss. I am no longer ignorant. I am no longer quiet.

It’s one thing to shout at the wind. It’s another to act. I am embarking on real change. Please follow along as I start a new series. To Be Continued.

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