Shit. That situation sucks. That's all there is to say. I'm in the waiting room for radiation oncology at Henry Ford Hospital ,Detroit. I''m getting Radiation treatment 3of4 for arecurrent glioma. Been surviving it for over ten years now. No cure for gliomas either. We've been managing this shit for over ten years now. Not all of ithas been terrible eitherthough. I'v e had some amazing times with my kids

and family. Times that are farmore amazing as I didn't think knewthey were guaranteed. I heard a hopeful statement about situations like ours. "It doesn't always get worse."

It's true.

I No one's disease is the exact same. Only by keeping fears at bay can we get our best result. I hope you guys find yourselves feeling better soon. I also work hard to live by ," It's rarely as bad as you think it will be and rarely as good as you think. Lastly, I've learned to recognize and discard related fearful thoughts that pop into my head. Listening to your random fears will drive a person to make terrible decisions.

Also , sorry as my typing is shit. My last two surgeries f-ed up my left field of vision. navigating a keyboard by sight is super tough.

I am on day 24 of my first 28 day chemotherapy cycle to knock out a now recurrent grade III glioma, brain cancer, that I was first treated for in April of 2012. I'm test driving a new therapy as participation in a trial that combines the the standard of care chemo and an additional enzyme inhibitor that targets a gene mutation in the tumor cells in my head.

The good news is that I appear to be tolerating it well. I've had three blood tests to corroborate this.

The longer I can withstand treatment, the more likely we'll see no change, or maybe some tumor reduction in my upcoming bi-monthly MRI's.

I've also been spend time with my wife and kids during this first week of covid-19 sequestration. We dug up the 1983 classic movie, "The Right Stuff" Friday evening and my 10 year old daughter and my 12 year old son were enamored by it. Likely, we'll be using space travel as a centerpiece of our home-school writing and reading for the coming week.

It may negatively affect adoption, but I rarely ever check the global feed due to spam. Hubski is awesome because it is not casually accessible. As is any substantive conversation. In order to participate in a thoughtful dialogue, one has to listen, and observe. Hubski is quality over quantity. It's accessible to all that will invest the time to create an account.

On November 20, I learned that the MRI of my brain was clear of cancer. Closing in on three years post-surgery, radiation and chemo, I'm happy to learn that I am likely to continue to live many years cancer free.

In additional and very emphatic agreement, it looks as though my life has been prolonged and a great deal of quality to my life has been presevered due to improved image sharing that could have easily lead me to make some very poor decisions about my health. Turns out that some slight neurological oddities had been occurring to me for the past five months. These culminated on my front yard one day two weeks ago as I had a full generalized brain seizure. Turns out that MRI imaging revealed I had a slow growing low-grade glioma type tumor. A very important image to me. The tumor has now been resected. Thanks to MRI imaging during the actual surgery, there is high confidence that maximum tumor matter was removed and I will also be having follow up treatments and MRI imaging to keep this cell material at bay for the maximum time period.

Now, though I'd like to express what I feel is the most touchy and slippery part of using imaging to communicate. From this brain tumor experience, I am confident that I was one second opinion away from being unable to ever post this experience as I am on hubski. I was one "yes, I agree doctor" from having a total gross resection of my entire right temporal lobe, based on that doctor's best interpretation of my initial MRI images. I had a very honest, hardworking, and earnest neurologist suggest to me that my current condition was immediately life threatening, I needed to be on relatively high levels of cortico-steroids immediately due to a swelling threatening lesion in my brain, I likely had other tumors around my body, and he felt his surgeon, at an excellent, small suburban hospital, should begin quickly to remove the lesion and as much surrounding material they could sacrifice.

Fortunately for me, I had images and information that I began to share. This is what allows me to continue to be who I am and continues to amaze me as I recount it. My brother has worked at the Henry Ford Neuroscience Research Center for ten or more years. I clearly remember sitting at my desktop with the image CD that the MRI center gave me. I opened the images and, not knowing what to look for, knew enough that assymmetries were probably not good. I found an asymmetrical density in my right anterior temporal lobe region, added the pics to my drop box, got on the phone with my brother and started to come up with questions. This initial fact finding got us up to why or what and then lead him on to sending it to an informed radiologist friend of his. All of a sudden the ball was in motion. Information in the form of picture images was beginning to change the direction of my life. Not that I wanted it to, but the alternative to doing nothing did not look any better.

This image sharing made all the difference. As I sat in that small suburban hospital and the folks dedicated to my care worked in earnest, it turned out that not a single one had had the necessary experience to diagnose what my condition has actually turned out to be. I hold no ill will against them, they did not know what they were looking at.

On the upside, I left that hospital with an appointment the following day at Detroit's Henry Ford Hospital (professional grade people that care, from orderlies, to the chair of neurosurgery). Turns out that the images I shared with my brother were then shared with some people that had likely dealt with this type brain tumor before. Their intuition was dead on and within minutes of my meeting with two well informed men I was absolutely convinced I was speaking with the right people. I had a surgery scheduled, a thorough description of the tumor, that from the imagees alone has proven to be 90% correct as of actual tumor pathology reports, this was the primary tumor and cause of my neurological concerns, and I was not in immediate danger of edema related intracranial pressure. The tumor has been growing for somewhere around ten years, low grade gliomas like to be persistent and attempt to return. I'll be recieving chemical, radiation treatments, and possibly on the long horizion, some form of gene therapies or vaccine possibly. It's very early to speculate much on this, but thanks to some images, but more importantly, having those images in the hands of folks that can interpret them best, my outlook on my future life has improved dramatically.

In time, I expect my four year old son, Robbie, will also see how he can get better collecting and sharing images as all people will. From my vantage point of life right now I've gotta say that the interpretation of an image carries far greater weight than I could have imagined. I came out on the better end of what could have been a bad situation had I gone along with the opinions of those that thought they knew what they were looking at rather than those folks that instead recognized complete familiarity and knowing of the images that were presented to them.

I can see from the images of my stapled head I sent to friends and family immediately following my brain surgery, I'll be excercising my shutter finger more as most everyone in the world. Sharing images is easy, fun and creative. I'll now never be able to underestimate though how interpretations of images can so dramatically change possible outcomes that so often we may not have an awareness of.

In the meantime, as I progress back to middle school math/science teacher mode, rather than dude surving tumor, I'll always have a deeper consideration for demonstrating to all kids that are willing to listen of how important our critical thinking skills are to our human condition. I expect to have a great deal of fun.

Jeff

You are a great guy, especially considering how creatively I innovated problems for you when we were yournger, but more importantly you have been creative and innovative in your approach to solving the problems associated with cancer and stroke through your research at Henry Ford Hospital. Research that intersected ideally at the crossroads of the currently best known solution to a problem I now posess.

In relation to this article, I do see a great hope for the future of human creativity. Creativity, in solving problems, creates other residual problems. I expect that with the removal of part of my right temporal lobe, I will see some temporary and residual problems in my life. The neuro-oncologist, and neurosurgeon have both made me aware of the likely outcomes. In my ability to creatively view the likely outcomes of my future, I am also consciously choosing to favor the residual problems over the primary ones by far. Without creative medical intervention, my primary problems are expected to be: increasing seizure frequency, possible death or injury to me or others from an untimely seizure, certainty of increased tumor aggressiveness without ever having direct pathology of said tumor material, and accepting that choosing inaction will most certainly lead to a shorter and lower quality for my remaining life. From speaking with the experts in gliomas, as well as my communications with others in the four days since I've been aware, I am pretty firmly convinced that human civilization is at a tipping point with creativity sharing, the likes of which have never before been seen on earth. The ability that a person like me has to share the amount of information I've traded in the last four days, about a potential life-threatening condition, has only confirmed to me further that creativity is everything. We are traders of creativity and information. We trade creative solutions to creatively born problems.

Like you, I enjoy the beauty of Michigan's Upper Penninsula. We would be able to enjoy it if it was truly only old growth forest. We could not get there, but we can and that's what makes it special. Similarly, I also enjoy writing this post more than others I've written in the past. My creative thinking about what the rest of my life may or may not look like has given me perspective of life farther from the "treadmill of problems" than ever before.

Thank you brother.

-Jeff

*I would guess that the cost in watts of this email transmission is far more efficient than the amount of energy it would take to cut a field to feed a horse, to pulp the trees and bleach the paper, to ship the india ink, from Oakland County to Detroit.