|June 23, 2018||Posted by Melinda under Uncategorized|
Ready for some answers?
It’s a primary optic nerve sheath meningioma.
Yep, it’s cancer.
I HAVE CANCER.
*Pausing* as I duck to avoid the copious amounts of hugs/well wishes/screams/grasping hands. *Lifting head*… “is it safe now?” OOPS HERE COMES THE DIET AND LIFESTYLE RECOMMENDATIONS. Wow that was a lot. Is every done yet? Nope HERE COME THE CANCER WALK EVENTS AHHHHHHHHHH!!!!!!!
First, because one weird side effect of telling people you have cancer is that THEY burst into tears, let’s get a few important facts straight so that you can focus on what I’m saying.
I’m not going to die of this, at least as far as you can say you aren’t going to die of something. The worst that is going to (reasonably) happen is that I could go blind(er). It’s probably not going to spread to my left eye. It’s probably not the malignant type since it’s remained fairly static over the last 3 years.
ONSM is a benign slow-growing tumor. Unfortunately your brain is not a good place to have a tumor whether it’s benign or not. Sort of like California, space is a at a premium in the brain. Something there that shouldn’t be tends to cause issues whether it has the ability to metastasize (move to other places in the body) or not. But, if you are going to have brain cancer, a meningioma (still relatively rare) is the one to have. Too bad mine took up residence on the optic nerve (unusual location). Even more unfortunately I’m one of the lucky people who has to DO something about mine since it’s causing progressive vision loss in my right eye.
It took 3 years to diagnose. I’ve had it since I was 30 years old, which is the bottom of the expected age range for when these tumors tend to occur. The good news is that I’m still alive and it’s only been slowly progressing so it’s probably not some atypical or malignant type of meningioma.
Can everyone breath now?
In the middle of May I shared a meme on facebook that talked about how we could be more compassionate towards others if we all understood that we had secret unseen “signs” we all carry around despite what our lives look like to other people.
It’s easy to look at someone else’s life from the outside and conclude that their life is perfect and they don’t have to deal with all the drama that you do. Maybe you hold them up to a higher standard because what problems could they possibly have if their life looks that good? Here’s a life truth. I guarantee you that NO one’s life is complication free and EVERYONE is dealing with some suboptimal disaster.
I know what a lot of people think when they look at me and my life, because some of them have actually admitted it. 🙂 I have a husband, a cute kid, a marriage that works, and a job I love. The bills are getting paid and I don’t work 40 hours a week, my student loans will be paid off in 10 years, and I have some awesome trail adventures on a regular basis. Blah blah blah blah. *I could go on and on.
*Here’s a hint for life happiness – choosing happiness and being good at “reframing” goes a long ways towards creating this picture. Notice that I said “My student loans will be paid off in a decade!”, not, “I’m saddled with an untenable amount of student debt that is slowly suffocating me and is taking 10 years off my life from the stress “. Both statements are true. I just like the first one better.
Of course, the kicker for my “picture perfect life” that isn’t immediately apparent is that I am going blind and (before this week) no one could tell me why. It makes it difficult for me to read on the computer (with the end result being that I rarely read people’s blogs any more) and my races have slowed down a bit because running down technical hills requires depth perception that I no longer have. I’m bone-tired at the end of the day from my brain working overtime to interpret the not-quite-complete images I see from my right eye. The amount of time spent in doctor’s office’s and doing diagnostic testing could be considered a part-time job.
Remember this. No matter what someone’s life looks like to the outside, there is ALWAYS an untold story. We are ALL in the same humanity boat. Practice kindness, don’t assume.
In the way that it often happens, the day after I posted about this on facebook, the UCD specialist that I had seen as a last ditch last (third, fourth?) opinion called me and said she had tracked down a neuro radiology specialist and showed them my most recent MRI images. The automatic response to my MRI’s interpretation had been “optic neuritis”. It’s truly the “*horse” in this scenario. Woman in her thirties has eye issues that show up as contrast in the optic nerve. Diagnosis? Optic neuritis/autoimmune.
*a medical saying that is essentially – when you hear hoof beats, think horses not zebras – as a way to remember not to jump to the weird and cool because most likely it is the every day and mundane.
The problem is that for three years it hasn’t acted like optic neuritis. And, I finally found the doctor who knew the right specialists and asked the right questions. “What is the zebra?,” she essentially asked, “It is NOT optic neuritis, so what else could it be?” Turns out, that answer was “meningioma”.
Tuesday I went in to have yet another MRI performed to see if we could get a different image “slice” of the optic nerve and confirm that specialist’s suspicion. It’s not easy to get the right image and there was a lot of checking images and retaking images (longest MRI ever, which is saying something. this was my FOURTH MRI this year) to get exactly the views needed. It took less than 12 hours to get the results back – it was a meningioma as suspected.
Next step is a radiation oncology consult, starting with UCD, and probably getting at least 2 other consults from other facilities on treatment options (UCLA probably, and then I’m not sure). Surgery isn’t an option for that location, most likely it’s radiation therapy that we will try. The risk versus benefit has to be weighed. At first I was opposed to any treatment at all. Why risk the left eye when the slow-growing tumor was confined to the right eye? Why destroy the right eye and the small amount of remaining sight (that does help with my peripheral vision and a small amount of depth perception) to remove the tumor before absolutely necessary? After chatting with my ophtho neurologist it turns out they can perform radiation therapy with the goal of NOT affecting the underlying nerve and there is a chance they can get rid of the tumor while preserving the remainder of the vision in my right eye. Nothing is without risk and there will be a lot of questions and conversations with the docs, but with the chance that this goes beyond just a salvage procedure, I’m at least willing to discuss treatment.
That’s the medical side of things. Let’s talk about the social and societal impact of this diagnosis.
I’m shocked out how many people are breaking into tears when I tell them my diagnosis (yes, I figured this was one life situation where you warn loved ones before you go posting some sort of blog post that screams I HAVE CANCER. I’m not completely heartless). I’m reasonably pragmatic about the diagnosis. My options don’t include some sort of “E. None of the above” and trust me, having lived the potential alternatives of various autoimmune diseases for the last couple of years, the answer of “A. Benign brain cancer” is why I’m telling you this diagnosis with a smile on my face and giddy laughter. Thank GOD it’s cancer.
What are you suppose to do when someone tells you that they have cancer? It’s a safe bet to mirror them. In my specific case – I seem happy and unconcerned? Then after the moment of shock has passed, it’s fine mirror that. I’m sure you are upset and shocked. I’ve had more time to get used to it than you. But….Here’s a hint – If I have to spend a massive amount of time comforting YOU and reassuring you because YOU are such a mess about MY diagnosis…..you are doing it wrong.
This is where I’m sure I’m going to offend someone.
Ever heard the Ring Theory? Read about it here. It is THE MOST IMPORTANT thing you can practice when trying to decide how to respond to social situations. I still don’t get it right all the time – striking the balance between looking like a heartless bitch because empathy doesn’t come naturally to me, versus over sharing and taking the focus off the person in the center of the ring. The struggle is real, but I swear I’m trying. In this case the ring theory is pretty darn clear. I AM THE ONE WITH CANCER. I am not expected to spend MY emotional and mental energy making YOU feel better about it.
I am not trying to say that your feelings aren’t valid. If you need that kind of support because this is that hard for you, find someone who is outside of my ring, in an outer circle and “dump out” to receive your support.
Most of you aren’t not going to violate the ring theory rule. In fact, the thought of violating it probably feels foreign and scary. “People actually DO THAT?” Yep. And now you have a cool theory and diagram to help explain why it feels so wrong when people say certain things.
I want to be clear. You can absolutely tell me how sorry you are for my diagnosis. You can commiserate with me and, if I’m crying, you can cry with me. You can ask me how I’m doing. Showing me love and support is much appreciated. What you CANNOT do is turn into such a wreck that you require continued ongoing support from me, to reassure you, that I’m ok.
I’m sharing this bluntly here on the blog because I have people in my life that need to hear this (who mostly don’t read the blog, which is why I can confidently say that if you are reading this, you probably aren’t the one I’m worried about!). My tendency (and a lot of other people’s tendency) is to AVOID people who don’t follow the ring theory in “big life moments”. I will go to great lengths to avoid seeing or telling people who have a history of showing how much they care by turning it into something that is devastating for them and dumping that on me. I just don’t have the energy right now. So, remember to dump out, not in :). You are much more likely to get timely and complete information about whatever is going on.
Let’s talk about “Cancer awareness”. I’m going to sum up my feelings on the subject in a way that is probably going to offend yet more people (I’m on a roll). Fuck the pink thing.
I’m pretty sure that brain cancer has some sort of ribbon, maybe green? I couldn’t be bothered to check. I’m not at war with my cancer, I don’t care about “fighting the good fight”, and although I’m an optimist by nature and have confidence in a decent prognosis right now, I don’t believe that keeping a smile on my face or “being positive” will make a damn bit of difference. I already have things in my life that motivate me and keep me moving on – my horses, running, and wondering if a cancer sob story will get me into Western States 100 sooner rather than later (probably not). Maybe some people need cancer awareness movements in order to give their life purpose, but I do not. Defining my life as a “cancer survivor” is about as exciting to me as identifying primary as “mom”. No thanks. I play a lot of different roles and while inevitably those two hats belong to me (not unhappily!), I refuse to let either define the whole me as society seems wont to do with those titles.
I’ll keep you posted as decisions and treatments progress. Honesty and transparency is my pledge as always here on the blog, as it has been for the almost decade I’ve been writing on this thing.
If you see me in person it’s OK to ask about the cancer…and it’s also ok to ignore it completely. It’s not a secret, but it it also doesn’t define my life.
I would love your *comments, messages, emails as you feel moved to send. I may not be able to answer all of them individually – it just depends on how much left over energy I have at the end of a day after taking care of my self-care needs, but I read and appreciate ALL OF THEM.
*PS – If you send me anti-cancer diets it’s going to piss me off. So please don’t.