Answers
| 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?
Good.
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.
You guys are hilarious. So far I’ve been given the suggestion of “homeopathic essential oils” and “tumeric with REGULAR NOT EXTRA virgin olive oil”. HAHAHAHAHAHAHAHA. You guys are the best.
Ok new rule. Anti cancer diets are allowed as long as you don’t mind me using them as my comedy hour with my coffee (I mean tea….no coffee until tahoe 100 in a couple of weeks!)
Hi. I’m going to make this about me for a minute, but not in the way that you specifically told us not to, so I hope it will be ok. I found out earlier this year that my mom has cancer. Her prognosis is good and they caught it “early”. She is with a great team, yada, yada. As far as “you have cancer” goes, it’s a best case scenario.
This entry has helped me so much in putting words to my feelings.
My mom is peppy and upbeat and, in her words, refusing to have side effects from her chemo. I try to mirror that when I’m around her and be peppy and upbeat (although I did cry when she told me. To be fair, I was already crying because of my dead horse, but that’s a long story.)
One of her neighbors who barely knows her tried to give me the whole sympathetic, “OMG are you her DAUGHTER?!?!?!” It annoyed the hell out of me, and now the ring theory really helps me understand why.
Thank you for putting this all into words.
And, yes, I am sorry for your diagnosis, and I hope that you have best case everything so you can get back to living your life full time without all the appointments and inconveniences and wasted time. I’m glad you have an answer, but fuck cancer, seriously.
Your comment was perfect is so many ways. Omg the wasted time. That’s my biggest annoyances about the whole thing. I’m waiting with bated breathe to see just how many weeks of radiation this is going to take.
Isn’t the ring theory awesome? I think someone gave me that link a year before my sister died and that little concept has done more for me to feel comfortable about what to say, and for not just feeling hurt and angry when some one says the wrong thing (because I understand why) then ANY thing else.
I’m so sorry your mom has cancer. That really sucks. I wish both of you the best. And no, you didn’t violate the ring theory at all by sharing. Knowing that people feel the same way I do and sharing their similar experiences makes me feel so much better. I was scared that when got strict about the ring theory that people would misunderstand and think tag I didn’t want to hear stories or anything, but I think most people get it. At least I hope.
Ha ha about the tumeric. You will be in my thoughts and all the best for you. I’ve gotten a lot from your writing over the past many years. If Stanford is ever in your plans, we can accommodate you all in Menlo Park. As an aside, since it isn’t pregnancy related autoimmune, think of the possibilities!
So….not pregnancy related autoimmune but still pregnancy related. Meningiomas are known to be one of the cancers that grows rapidly during pregnancy. Which is why clinical signs started to occur at the end of pregnancy but why it’s remained fairly static afterwards, especially after I stopped breastfeeding. It’s one of the the things that made this diagnosis such a good fit.
I didn’t know that cancer during pregnancy was such a big thing. I read one book that said one out of every thousand. I knew melonomas grew faster during pregnancy so I checked my skin carefully during and afterwards but no idea there was others too. In fact it’s such a perfect fit it’s sort of weird that my doctors or myself (I was doing a ton of research as well) didn’t come across meningioma as a possibility earlier. There’s even several papers out there that are all about meningiomas that were first misdiagnosed as optic neuritis exactly like mine (with the conclusion that better imaging should be done especially is optic neuritis is atypical before calling it neuritis. Ah well. Maybe my case means someone else will get diagnosed faster if they see these same team of doctors.
I hope you are right about faster diagnosis. Maybe they can submit a case note to a journal and get some info out there. Interesting about pregnancy and cancers.
I love your post!!! Exactly how I felt while in the hospital. I could not comment comfortably on the family group message for the reason that most of the jokes I wanted to make would make everyone else feel like I was insincere and dark humor has its place.
Love you cousin!
I’m glad you appreciated the post!!!! And yes, you totally “get it” 🙂
Well, crap! But, at least you have answers and a path forward. Undoubtedly there will be detours but overall you are fortunate to have great doctors and a positive outlook. Having said all this, a prayer army is also a great weapon to have in your arsenal. Get ready! Hugs and blessings.
Really glad you have a diagnosis, even though it’s one that gives you some treatment options that sound scary. I hope the treatment goes really well.
Now, on to the really important part… I have some fish oil, tumeric, goji berry, flax seed all organic, all ingredients harvested by virgins at 1 minute past moonrise muffins that will cure you (for the bargain price of elventy million dollars)!!! They are best eaten with a good dollop of snake oil butter!
Oh goodness those muffins sound positively toxic! LOL!!!!!
I have type 1 diabetes, I think all of those ingredients have been suggested to me as things I can take to “cure” diabetes! I just thought i’d share the love!
Your post made me giggle, made me laugh… Does that \make you happy? A good friend of mine was diagnosed with cancer a year ago, and she “hid” it from people as long as she could. Why? Because the people she told broke down crying and hugging… followed by emailing, lots of emailing with links and diets, and yeah tumeric. She doesn’t want to waste her time comforting those people. Other than me, only one other woman did NOT break down crying.
It also made me question myself. “A lack of empathy”, wondered if I had that too. But I am her rock right now, we get shit done with no drama. And we do the stuff we always used to do (we just walk a little slower now).
I completely get it. It’s like telling people you are pregnant. It’s followed by so much “how are you doing” questions and “are you ok” EVERY SINGLE TIME it’s suffocating and makes me want to turn into a hermit. People cant just shrug and say ‘OK, let me know what i can do, I’m here to help” and then get on with life. There’s only so much time I can spend talking about how “horrible the diagnosis is”. Especially when in the big picture it’s not that horrible.
I neglected to mention my biggest pet peeve. The BABY TALK VOICE. They are incapable of speaking in a normal voice anymore. The pitch goes up a few octaves, sounds like they’re talking to an infant or a Schnauzer
LOL LOL truth.
I laughed a lot reading this. “Sort of like CA, space is at a premium” in particular.
I am so glad you finally have a diagnosis! For me the not-knowing is the hardest part, and it’s wonderful when you can finally get answers that make sense.
That line just came to me suddenly as I was writing it and OF COURSE I HAD TO USE IT. It cracked me up so much.
Answers are so much better than uncertainty and mystery. I wish for you the best case scenario each step of this journey. I love your mindset and the points you make about having so many other hats to wear and things to motivate you.
Thanks for sharing the ring theory thing, too! Very neat visual and description.
This was very scary to read, but then I continued reading and your strength, as always, comes though. Get out and do the things you love, that is my cancer diet for you!
It makes total sense that having the answer would be a relief, even if the answer is cancer. Not knowing sounds like it was so hard to deal with. Thank you so much for the link to the Silk Ring Theory. I am experiencing part of my life where some people feel compelled to inform to me about how much [they imagine] my life change is affecting them. It’s nice to be able to point to something written by an actual clinical psychologist to remind people that complaining to me is not useful.
Oh boy, that ha got to be SO ANNOYING.
Best of luck!
You are the best and if I have any skills or stuff that you want that will help, you will call upon me to produce them. Right??
And some day we’ll sit together over a cup of goji berry and turmeric tea and compare the ungawdly “remedies” that people have given us to fix our lives. Because that conversation will be hilarious and also worth both of us writing up on both of our blogs. Let’s invite more people to join us. Because we can.
Love to all y’all in California where space is at a premium.
Thanks Aarene and I will!
I absolutely love this. And, knowing you personally, I am not surprised by your reaction to your diagnosis… you are one cool mama/rider/runner/vet/friend, etc. etc.
And yes, I still have student loans too. I’m pretty sure they won’t be paid off in a decade, but whateves. I’m still happy… oh, damnit, that reminds me… I need to call Great Lakes regarding my repayment plan… thanks for the reminder!
This! Boy I want to print the ring theory and carry copies with me always.
When I was diagnosed with my second type of cancer my mom posted it on Facebook before I’d even gotten home. Hugs and best wishes
How supportive!!!! I may ask someone to post it on my behalf when I start treatment as a good reminder. Although most people are already good about it and I’m not sure it’s going to matter for the ones who aren’t. Sigh. There are a few people in my life Who I think understand the ring theory, BUT who assign themselves into a circle closer to the center than they actually are. They cannot be convinced that they don’t belong there and that I’m the one that gets to decide who is in what ring of the circle. My anxiety sky rockets because they are breaking the rules of how I perceive they should be acting, and they are hurt and angry and ask for comforting because of what they perceive as rude behavior and me “shutting them out” because they are asking for privileges that I’m uncomfortable with. I haven’t figured out how to deal with these particular people but at least the ring theory helps me understand why I’m so upset when it happens and maybe by enlisting the help of some other people I can come up with solutions. It’s hard though and adds another layer of stress to my life which makes me angry AGAIN because it’s not my problem, it’s theirs and they are making it about them.