I haven’t been able to really write. I mean I’m writing, but not really. Not writing what I’m really thinking. Maybe you have noticed.
But yet I can’t write about it. I try, oh I try! One thing I’ve learned is that for some reason I need to learn the same lesson over and over before I heed it. I need to write about it so I can read it, but it’s so complicated and med student I am not.
I am just a cancer mom.
So I read. That is what I’m doing. So MANY books. Too many books. So many studies. Too many studies, but I’m not giving up on the WHY.
There is one absolute. I know for sure why I’m here. Lightning has struck twice. Look at the odds of Jacob’s cancer. Look at the odds of Steve’s. We are that house in this picture.
We have been struck. We have been chosen. We an anomaly of anomalies.
It is going to sound crazy, but I feel like I HAVE to continue this work like I was meant to. I can’t just sail away like last time. There is NO cure for what Jacob has. There is no long term pretending. And who says this is the end? I thought it was over after Steve…can lightning strike three times?! I know better now than to say no.
I’m also dedicated to find meaning from the last year of trauma. If there is good to be found, it is helping others. It is finding EMIT, the truth.
I sound so naive. I’m sure I am.
It is ridiculous, I know. This is why I don’t write about it. I sound ridiculous.
I swear I’m slightly rational…I am aware of my shortcomings. I am aware that I have no med degree, but I respect the heck out of those who do. I am aware that I don’t fully understand the inner workings of the immune system, but I will try my hardest to.
But they’re also things I don’t have that work in my favor. I have no biases. I really don’t. I don’t have the training to look at the world in a certain way. I don’t have a lens of expertise. I’m not an oncologist, I’m not a dietician, I’m not any of those fields. Maybe that is the blessing I bring, complete open-mindedness.
But wait! I do have one expertise. I am an educator! I bring that.
If there is one thing I know how to do…it is to learn. And I would add to this the ability to ignite others. As an educator, I understand how the brain intakes information so I can learn basically anything if I want to. I also know what distinguishes okay teachers from excellent teachers, the ability to inspire others to care. To get kids to care about punctuation is a skill. I have this skill too. I can get hundreds of kids to think learning is fun.
Maybe I can make an impact with these skills.
So I’m a teacher in the field of solving cancer.
And here is a doozy- I feel more confident that I will make a dent in cancer versus beating that bus in the marathon, lol.
So I’m going to try and record where I am in my thinking for my own notes. These are for me.
- These cancers were not in our germline. They are “rare.”
- Turns out rare is not so “rare.” 50% of all cancers are rare. As defined by the National Cancer Institute, cancer that occurs in fewer than 15 out of 100,000 people each year are rare. Therefore, most types of cancer are considered rare, and they are often more difficult to prevent, diagnose, and treat than the more common cancers. Because there are fewer cases, research is difficult.
- My hypothesis between “rare” and “not rare” cancers is genetics. Genetics plays a huge role in cancer we know, but the “rare” cancers I believe are from environmental carcinogens otherwise they would not be “rare.”
- I now understand the entire history of cancer. I have seen the “movements” of thoughts. I understand where we went right and wrong. I also see the biggest issue to solving the most elusive disease in our world is ourselves. I have read studies that have been buried. I have read case after case of researchers laughed out of the medical field to only be proved right long after their deaths. The limitations of man to think beyond what he sees or beyond his own thinking is one of the largest issues. Understandably so! No judgment. It is hard to believe in things we can’t see or study with our tools.
Like when a doctor in Austria in the 19th century tried to convince doctors that the reason women were dying during childbirth was that they had dirty hands, he was mocked and laughed at. “Doctors are a gentleman…A gentleman’s hands are clean” was one prominent physician’s response. They couldn’t think past their physical reality of “dirty” (example mud, dirt). The idea of microscopic microbes covering surfaces like their skin was unfathomable. The idea that they were killing their patients was absurd.
This quote is important to me:
There are two ways to be fooled. One is to believe what isn’t true. The other is to refuse to believe what is true.
- We know that the body is capable of killing cancer (immunotherapy and cases of spontaneous remission) so I spend my entire nights on the immune system. Why do some of us let these cells live and others of us kill them immediately?
And the rest I can’t put into words, because like a newborn, I’m still in regurgitation stage. I’m a repeating parrot trying to make sense of the words being presented to me. Trying to make meaning out of the slew of stats, but basically I believe everything comes down to ENERGY.
That is my belief. In my core. In my gut, which I’m also reading a lot about too. Turns out we have more than one brain (control center). We probably have three (brain, gut, and heart).
If cancer is a breakdown in the immunity system of the body, then where did that breakdown occur? How did the immunity cells miss that cancerous cell? Where was the breakdown there? So I just go backward from there. Asking that very important question: “Why is that?”
This always brings me back to the atom, which brings me back to energy.
I think of it as our bodies being a big ball of circuits. A dashboard of switches. Just like a computer, our body has decisions “0” and “1.” On or off. Go or stop. One neuron firing to turn on another cell. Or not firing. And what powers these signals, energy/electricity. What is energy? The movement of atoms.
Where did the energy go wrong?
And if it’s not genetically predisposed wiring that causes the energy to go wrong, where is the outside energy coming from?! WHERE?!
So that is what I’m doing. I’m doing that. All-day and night and I want to thank many of you that have been putting me in touch with people to help me find the answers. On Friday I’m visiting the environmental studies program at Mt. Sinai. Thanks Deb!
So if your wondering where I went?
I’m in a deep dark geeky hole that I am absolutely “unqualified” to be in.
You are amazing. You are thoughtful, you don’t stop and you are so thirsty for knowledge. What can I do to join you, to help you so you don’t feel alone? Call me if you find some exciting stat or answer or … if you don’t and you need to just discuss.
I just love how you think and process – and I am in awe of it all.
We skipped a few steps getting to know each other, but I tell you, I love ya and I respect you so much. I really do girlfriend!
Jamie Roy 917-576-5228
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