Writing has long been a way for me process the thoughts flowing through the bubble atop my shoulders. In a life, I’ve created, without much order, my writings have structure. They allow me to slow down and decipher between perception and reality. My diagnoses range from addiction and anxiety to morbid obesity and arthritis. I find comfort in being around people, especially my family. There is a certain safety in small groups. I re-read my initial blogs after Jacob died. So much has changed within myself and my outlook on life. What I see now, more than ever, is an anger that is growing.
There are times when I can focus on what is in front of me. These times are fleeting lately. I am consuming myself with regret that I’ve let Jacob down. I should have done <insert pretty much anything>. Writing has offered me little comfort, lately. Sitting in front of a computer long enough to formulate structure and inference is nearly impossible. I sit up at night, unable to sleep thinking about what I did wrong. What a narcissistic outlook to believe I was going to be able to outthink and outmaneuver cancer. I am angry about that, too.
I have learned more science in the past three years than I did in the 46 years, prior. This is not to say I could write a T-cell leukemic protocol and schedule for a patient after seeing scans and blood panels. Fuck it, yes, I am saying that. I’ve done what many haven’t. I spent two years with a patient, day, and night. I’ve rubbed his back and told him things will be okay, while wondering if they would. I’ve watched my wife sacrifice sleep while organizing bedside pharmaceuticals. 2AM nausea meds are real! I’ve sat with a sister who just wants her brother back. My sister and sister-in-law turned into “2nd mothers” for weeks at a time. The entire family halted life for two years not knowing what was to come.
Since Jacob’s death, I’ve been on a mission to change some of the practices of Taussig Cancer Center, as it deals with Leukemia. I’ve sent emails to anyone who will read them. Conversations come in bunches. Most of the people with whom I’ve dealt, really care. I can feel it in their inflection and words. Dr. Abraham and Dr. Carraway are two of the most caring doctors I’ve met. I feel as if they want to change procedures and add an empathy component rarely seen by doctors. They’ve listened to the ramblings of a disillusioned, broken father with care. These two people have made are what is right with oncology care. Dr. Patel, who was with him often throughout his journey, had his picture at her desk, as a daily reminder of his spirit and strength. To them, empathy is innate, and it shows. Trust me, we (patients and families of patients) can spot phonies as quickly as children. Thanks to https://jackieacho.com/dear-aspiring-oncologist/ for that gem of a quote.
I write with a clear focus of continuous improvement, but not always. Sometimes, I just want someone else to blame besides myself. It’s important to admit this when I have a Howard Beale moment and scream, “I’m mad as hell and I’m not going to take it anymore!” For any future salespeople, here is sales rule #1 when listening to customer complaints: Shut up. Let the person rant completely. Rule #2: Apologize. You are NOT apologizing for messing up. The apology is for how the person feels. Then, breathe and choose empathy.
The healthcare system completely failed us. This is not to say the healthcare system or CCF couldn’t save Jacob’s life. There is a huge difference in life-saving techniques against an aggressive cancer taking no prisoners and a holistic, empathetic care for the patient and family while being honest. This is where the system failed Jacob and us. What saddens me is there are so many great people, like Dr.’s Abraham, Carraway, and Patel, who go to work daily trying to come up with answers while showing genuine care for each person, with whom they connect. The healthcare system is failing them too and this needs to be addressed.
Conversely, Jacob’s primary oncologist, is considered the best in the field. He is a regular New York Times contributor. This man breathes an air of confidence with a large dose of hubris that could make #45 jealous. Although we didn’t care much for his humor, Jacob appreciated it at first. That is, until shit went south, and he passed us off faster than a hot potato. The normal protocols didn’t work, and the answers were suddenly gone. Jacob went from cured by the best to a justified statistic very quickly.
This might not be a reality, as I was not in the mind and heart of the doctor as he made his trek home from the hospital in his convertible. Again, patients and family members can decipher between authenticity and false bravado do quickly. We know that when we are in a room with the doctor and he/she/they stays longer to just sit with us without an answer, this is all we need. This means more than publishing and accolades.
Recently, I wrote this doctor, who has since departed the clinic. My first words were to let this person know that I am not suing and accept the fact that, in Jacob’s case, cancer was too aggressive. I also let him know that I’m angry and was possibly taking “cheap shots” to vent, giving him a free out to EMPATHIZE with a grieving father who clearly misses his boy. I then laid out very clear mistakes he made in CARING for Jacob. Mistakes, so simple, they could help future, scared families. I wasn’t expecting a reply and wasn’t completely sure he’d even get it.
Much to my chagrin, the doctor read my words and he replied. I hope you remembered my rules for listening to customer complaints. Two things were clear and spelled out: 1. I am angry and need someone to whom to vent and 2. There are real, teachable moments. What I received back was even shocking to me. Nothing was addressed. NOTHING. What I wrote wasn’t observations that could be misinterpretations of actual events. They are incontrovertible facts. The only thing that was mildly amusing was that he twice called me Bruce. BRUCE! I think back to the day of Jacob’s relapse of cancer. Naomi and I repeatedly asked for a CT until he conceded. Naomi read the scan results and shared them with me. We didn’t tell Jacob as we needed confirmation the next day. I took Jacob to the exam, and we were sent on our way with no issues. No relapse! “Hey Doc, have you looked at the CT results?” “The CT?”, he replied.
Upon looking, he said everything was fine and sent us on our way. I knew. I could read his face through his mask, and I think Jacob did too. Twenty minutes later, he walked into Jacob’s treatment room with that same, lost look. Jacob’s first words….” This ain’t good.” Nope, it wasn’t.
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