Patient Experience Day 35: Test, Text, Tweets, & Tears

Today I happen to be in a business meeting when my phone goes off. It is 2:16 pm CST. I know my father is at the medical oncologists office for his weekly appointment, labs, and preparation for his weekly infusion.
No response for minutes, so I respond with the all to familiar: ????
My mind shifts automatically and go from trying to manage and care for my father into caring for my mother, : OKAY. HOW ARE YOU? HOW ARE YOU DOING?
My mother sends a message telling me that she is “hanging in there” and also asking if I would be able to watch my father for a bit on Halloween evening, this Thursday, due to her having a work meeting. I confirm to let her know that it is not a problem.
I set the phone down and immediately flip back into work mode due to the business review I am in the middle of at work.
I leave work about 5:30 pm. I decide to stay over night versus driving 2 hours home this evening. I text a colleague and ask if he is around. He is and we deicide to meet up a bit later.
I go to my room and get situated. I head to the concierge’s lounge to grab a bite. I haven’t eaten since my morning protein shake. I see my colleague and we agree on 8:30 this evening. I watch the news. Catch up on some email. I am about to go down to grab a salad when my best friend Mike sends me a text to see how I am doing. I respond, DAD CHOOSE HOSPICE. WISH YOU WERE HERE, NEED DRINKS.
I go to the lounge and eat. Time is a blur.
I head back to my room because it is time for the HCLDR Chat at 7:30 CST. Tonights discussion is centered around @giasison who happens to be a physician that experienced cancer herself, and about dealing with a diagnosis as a patient. It is inspiring. Her words, her insight. The numbers of tweets, comments, discussions that are spurred due to this is amazing. It puts me in a world of awe.
It comes crashing down on me to realize that I too am more of an insider than I ever have been before in my life. I have dealt with cancer in friends and some aunts/uncles but today it hits me at the soul, it is my father, and there isn’t a damn thing I can do to fight. I just have to sit and accept it.
As I look at the cursor on the screen trying to consider what words to write, I look up into the mirror and see the corners of my eyes slightly red, fighting back a few tears. I wipe them. My mind is blank. I can’t articulate the emptiness inside of me. I should feel something, but I don’t. Wait, I do feel something but it isn’t at all what I expected to feel.
I feel a tremendous amount of worry for my mother. I wonder if she will be okay? If she needs a break? If she knew this is what he was going to say? Has she processed all of this and how is she going to be able to cope?
How can I feel complete calm about my father and only be thinking of my mother? Am I wrong? Am I not being empathetic or compassionate to my father? What’s wrong with me?
I then begin to put some understanding around all of it, at least as best as I can.
My father took control over cancer. He decided how he was going to finish his chapter on cancer. He wasn’t going to allow cancer to fool him or trick him into a false sense of time. Instead my father decided to meet cancer head on and say come and get me. Let’s get ready to rumble. I will be comfortable. I will be at home. I will be with my loved ones. I will make the most out of the few moments I have and I am doing it my way. This is my choice. My decision. My power over cancer.
I now realize that perhaps this story wasn’t at all about my father.
Perhaps this story is about the after affects from the void left once someone exits stage right and the rest of us are left in the audience? How do you make something whole again? How do you regenerate that piece that will soon be missing and will never be there again?
I am not quite sure what the next act in this story is going to be yet. I am not sure if this is a comedy, a drama, or perhaps a tragedy. All I do know is that there is a lot left to write, and I am prepared for the ride the story is going to take me on.
It’s all about the stories.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM

#PtExp #PX #cancer #hcldr #hccosts #hcsm #stories #storytelling
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  • Matthew Katz (@subatomicdoc)
    Posted at 07:56h, 30 October

    Andy, I’m so sorry to hear the news. It sounds like your family is very close and at times like this, that is so important. Your worries for your mom are natural, and with hospice it help relieve some of the concerns for your dad’s suffering. It also sounds as if you can see his courage and that is a positive aspect that offers reassurance as life comes toward a close. It doesn’t change the grief that comes with loss but with good care anxiety and uncertainty becomes less of an immediate issue.
    That doesn’t make it easy. I recently lost my grandmother to CHF at age 92. I was able to make it in time to be with her, but I still get emotional about her. I don’t know that we can regenerate those we lose, but we can honor them and they do continue to live on through our memories and actions. I still try to do that, and I’m sure you will as you continue down this road.
    My thoughts and prayers will be with you and your family, Andy. Thank you for sharing, let me and your other friends online know how we can be there for you.

    • cancergeek
      Posted at 19:29h, 30 October

      Dr. Katz
      Thank you very much for your kind words and thoughts. Thank you for taking the time to read and most importantly, for sharing your personal journey and story with me as well. I greatly appreciate it. It means the world to me & my family that so many people are willing to share, comment, and allow me to lean on during this personal struggle. I will definitely let you know when or if I need even more support. Again, thank you and wishing you all the best too. Andy

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