u/durangoho

I'm a 12-year brain cancer survivor (started grade 2 now features of grade 3 diffuse idh1 astrocytoma in right temporal occipital region). It's strange seeing that number. I've oriented my life for the last 12 years under the assumption I'd be dead by now. But here I am… chugging along. Three brain surgeries later, still navigating life, meaning, and purpose in the face of a seemingly fatal ending.

Some context. My entire childhood I wanted to be an entrepreneur. When I got my diagnosis, all the gloves came off. There was no longer the fear of death, and everything looked easier compared to what was coming. I started a company shortly after my second brain surgery. One employee became two, two became ten, and ten became 100+. It took 8 years, and we did it the right way, putting our employees' welfare first.

Two years ago I stepped out to start something new: helping families coordinate healthcare for their aging parents. I'm in my 30s, I've had three unrelated types of cancer, and I have several chronic conditions caused by the surgeries. It's been a long and sometimes lonely road, so helping people navigate the complexity of healthcare felt right.

Then last February it was routine scan time. Big recurrence. Yikes. Surgery that May.

This one hit me harder. More deficits. More cognitive impacts. I'm very much still me, but it took a while for my brain to heal, and much longer to work through the fear of starting another business. What happens if I have another recurrence and need surgery, chemo, radiation? What happens to the people counting on me? I once responded to this exact situation with determination and action. This time I responded with fear and paralysis.

So I hired a sports psychologist and worked through my blockers. I realized that if I'm not creating and doing what I do best, I've already killed the passion and magic within me while I'm still alive. So I'm continuing on, albeit in a very different manner than the first time.

I thought working through the emotional blockers was all I needed, and that I'd be off to the races. Oh how I was wrong. With any intensive cognitive work I last 2–3 hours, then I'm absolutely exhausted, physically and mentally. I'm still working on my stamina. I know it will come back and that I need to be patient.

All of this got me wondering how many of you, especially those diagnosed in your 20s and 30s, relate to it as a death sentence the way I did.

I'm thinking about making a video series about all of it: the ups and downs, and what it's like to build a life and a business with a brain that's been operated on three times. I want someone who's like I was in my 20s to see that life isn't over.

So I'm curious:

•	Did you treat your diagnosis as a death sentence? How did that shape the choices you made?
•	When you were newly diagnosed, what did you wish you could have heard from someone further down the road?
•	If I make this, what questions would you want answered? Nothing is off limits: the surgeries, the deficits, the fatigue, the fear. I'll build the series around what you ask. Caregivers too.

Maybe I'm looking for a nudge. Or maybe a big push, like the one my sports psychologist gave me last month. Either way, thanks for reading.

I totally understand why we need to get bloodwork monthly for the first year. What I don’t get is why I HAVE to have a followup appointment with my Neuro onc to review results when labs are normal. I asked if I could cancel the appointment if labs were normal and was told “well, we don’t have a mechanism to review labs unless you have an appointment”. That seems like a THEM problem and not mine. Is your hospital doing something similar? I’m on month 8 of normal monthly labs and it’s maddening to do the Monthly blood draws for no reason. It was only two months ago I got the doc to agree to let me do these virtual. Otherwise it was literally a 3.5 endeavour to waste time reviewing labs that are normal. Also doesn’t make sense because I know they don’t have enough providers for the clinic size so you’d think they’d figure out a way to make this more efficient.

hi all,

I am a brain cancer survivor and had my most recent surgery about a year ago. that surgery left me, surprisingly, with “super smell”. it’s hard to describe, but it’s like my smell went from normal to HD and while i do often smell things before others, I hesitate to say that it’s “stronger” — just more Hd. it was actually quite obnoxious for the first few months as I was smelling quite literally everything nonstop. It really gives credence to the philosophy that the brain is actually primarily useful for filtering information out..

In the past year, I’ve gone from quite literally only having one cologne to now having somewhere between 40 and 50. But I’m embarrassed because I don’t have the ability to really discern the individual sense that are in there because I haven’t been trained. Maybe it’s like a Somali who has the capability to be great but has never had any formal training.

I live in Denver Colorado, and I’m trying to figure out what options there are either locally or through a remote online program in order to increase my smelling intelligence. If anyone has any tips or pointers let me know. I’d really appreciate it.

And in case you’re curious, my favorite sense in my collection is VetiVerde #6 by Xinu. If you are ever in Mexico City, you must stop to see Xinu. It’s a breathtaking experience.

I've been using RPM to plan my weeks for nearly a decade. I just discovered there's a new app for it, so I began reviewing the support videos to get a feel for it. The app seems like it was designed by someone who doesn't quite "get" RPM. When it comes to scheduling, planning, etc. everything is "action item" focused and not result/outcome focused. Meaning, you drag and drop action items to 'time block' them rather than dragging and dropping OPA blocks. For those of you who use the RPM software - am I misunderstanding something? It seems wild to me that they missed this?