Pondering Cancer

Yesterday I had a fairly unpleasant experience with people who consider themselves scientists. In the beginning I was having a discussion with them that was only one of dialogue. But two things happened. 1) I wasn't in a good place for people who are rude or unpleasant and didn't realize it and 2) they were not open to ANY research or ideas that were not 100% on board with their way of thinking (and most of their thinking were OPINIONS that used words like, "evidence based medicine" but really just used a bit of data then used a bunch of alarmist words and phrases without considering multiple views. THIS is what I consider the worst parts of many disciplines today. We get so wrapped up in our own little view we mock or refuse to hear other perspectives. No I'm right right right- look at MY DATA.

Meanwhile, I wasn't even trying to prove anything at the time, I was engaging in a dialogue... but again, once one of them starting being rude, I didn't back away or engage pleasantly or stop the conversation - which I usually do... I snapped back.

Usually when I'm not able to be open to multiple views or have a dialogue without getting upset I just don't have one. This let me consider something even better... when people are going through bad times like family illness (or their own illness - or the death or loss of a family member etc etc) THEY ARE NOT AT THEIR BEST. (I was not at my best. Imagine that!)

I'm reflecting the experience yesterday and considering it from the perspective of how my entire family behaved while while my dad was going through his surgeries and we were getting increasingly bad news from doctors. It was an amazing time.

We were actually VERY good to each other. We didn't fight or freak out but actively worked together during the worst of it. We are culturally very diverse group of people and it was amazing to see how we engaged each other... but also very interesting to see how differently we approached difficulties, illnesses, and illness in general.

My sister in law (a woman who has been in our family so long, I call her my sister) is hispanic. When someone is very ill and in the hospital - they pull together with close friends and family to stay at the hospital and never leave the person alone. Meanwhile, as she told me, they worry less about "advocating" for the patient. In her own words, "I would trust whatever the doctor told me" about his health, his medication, and anything to do with his diagnosis. There would be fewer second opinions or checking with specialists etc but far more social support of the actual patient. And she was very much like this.

For me, I was much more genuinely concerned about my father's medications and his pain and that he was being taken care of and getting the care he needed. That he could be at stage IV cancer meant something had been over looked and now I wanted things like pain control when he had pain. Nurses would say, "He's going to have some discomfort." But after multiple surgeries my father is the type of person to be very stoic anyway. And he felt he shouldn't ask for any pain relief. But soon after he would be groaning in pain. This was VERY unacceptable to me and I finally had to talk to palliative care about it (with my father there). They worked with him to allow him to have levels of pain control without doping him out but also without feeling so in pain he couldn't think. And also helped him realize he's not less of a person for having it.

My brother on the other hand is more of a person to give orders- like tell my mother to drink water or get rest. He's the one to set up schedules online for all of us to communicate and make sure we are all on the same page. When we were getting diagnoses and finding out information he was the first to become silent and do research rather than ask questions because he likes to have all the information first. (And I on the other hand like to ask as many questions about it as possible because I like to gather information and work collectively- but it works out very well, and it really was a lovely system).

My parents were amazing together. It was humbling to me to watch them. My mom would take a paper to my dad and go sit by him. I have never wanted a relationship like them until I saw her sit next to him in a hospital bed when he was unable to feed himself or talk and I realized she was there for the duration. And it dawned on me what love really is. Watching them together healed a part of me. And I realized sometimes we are blind to our own family, especially our parents.

And mostly, my friends have been amazing through all this. Cards, and calls, and messages, and tenderness. And I have enormous gratitude for the love and support to take care of my family while my dad goes through treatment.

Ultimately - I realized it is important to know WHY people do what they do. It is important to see how and why people react. I've pulled away from many of my hospice and cancer chats because it's all up in my face every day. Somedays we've had six hour onc appointments and I just don't feel like dealing with it anymore. And somedays I'm fine and I feel uplifted and funny and happy. And somedays I don't know when I'll feel emotionally wonky. Like I'll feel like chatting about something interesting but I'm not in the mood for rude or unkind people and it will come out of no where. But this is part of it. Life happens.

Right now I'm more invested in allowing that I'm OK with being vulnerable and OK with accepting my family's strengths. It is informing my work as a scholar. It is helping me see cultural differences and how we can all work together to be stronger and "in this together." And... it is also just helping me see myself as human. Because ultimately 1 out of 2 men will get cancer and 1 out of 3 women will get cancer and this is how it goes. It is a rough go and we need to be loving and kind. And some days it is harder and somedays it is easier. And every day I am looking for a reason to love. Because I'm tired of shielding and hiding and being afraid. It is time.