What would you do?
For those who haven’t been keeping up with my situation over the past few years, I have a brain tumor. It’s a meningioma, which is supposed to be the best kind of brain tumor to have. I’d laugh, but really. Oh the things doctors say to try and be positive. Well, I named the meningioma Mr. Miyagi because it’s better to refer to it by name than to say the word tumor.
The word tumor sounds gross.
Anyways, studies and statistics measure life expectancy after meningioma diagnosis in increments, with five (5) years being the best case scenario for an outlook (from Cancer.net Feb 22 update). It doesn’t mean that once those golden five years pass that one keels over and stops breathing, it just means that’s all the research has to go on. And that’s with surgical removal of said meningioma.
Some people are diagnosed with a meningioma that is small and stays unchanged their entire lives. Wish that were the case in my situation. Mine is somewhat small, but every 6 months I go for a scan and the results have always been the same — Mr. Miyagi was growing. The only treatment option would be surgical removal. Meningiomas do not respond to chemo and radiation would damage needed brain tissue. And unfortunately Mr. Miyagi had grown just a little too close to the main vein in my brain, so that ended up not being an option to consider at all after surgical consultation. There is no medicine to cure a meningioma. That was the news at the end of 2011.
There’s limited research and studies on this type of brain tumor, but they are considered female hormone receptors. To explain this easily, it means certain hormones feed Mr. Miyagi and make him grow. Which hormones in particular? The ones produced by stress. Literally, stress is killing me. And I’ve worked almost 19 years full time in one of the most stressful jobs anyone could ever have.
2012 was the year I cried every. Single. Day.
2012 was also the year I decided to really live my life. More than I was already living. And I got a tattoo. And I went to some outrageous places. And did some outrageous things. Boy did I make some memories in 2012. And while I share pretty much everything on social media, I even did some things that were just for me and for no one else, but I always followed my heart and oh how I smiled even while I was crying in 2012.
And wouldn’t you know it, at my 6 month scan in May, the damn thing shrunk by 20%.
But I think that was just a reprieve. It was a chance to let me really get some perspective on my entire life. My life’s purpose. Why I’m still here. What the heck I’m supposed to do. Where do I go from here? All those things one thinks about when they finally realize time is precious and not to be wasted. And at times I feel like an observer of life, watching other people move along oblivious to the big picture of it all.
I had to quit worrying about things beyond my control, which is pretty much everything but myself. I still haven’t done some of the things I want to do and haven’t made some major life decisions that are looming. And if one judges time by that five year mark, then in another year I’ll have sailed passed that buoy out into unknown parts on borrowed time. But isn’t every day borrowed time for each of us? Nothing in the future is ever promised.
Mid-November, Mr. Miyagi decided to wake from his hibernation and I have had an unrelenting headache for over a month. And I know it’s Miyagi because the headaches are always a bit different than sinus, stress, or a migraine. It’s like a deep, deep toothache in my head and centralized to the area where he resides — the right frontal lobe. Recess is over, kids and I’m taking care of business now. I’ve got two things left on bucket list to finish off so I can focus on kicking Miyagi’s behind and then starting a new bucket list.
March 14 I go for my latest brain scan. I can either find out the latest results of Mr. Miyagi’s status on March 15 before I board an afternoon flight to the UK to check Scotland off my list, or I can wait until the end of the month after I return from my Venice trip. Bret Lane says I should wait. I’m an impatient person and would rather know so I can just deal with whatever the news is and move on with some major life choices.
Unless the darn thing has miraculously disappeared, then it’s time for me to search the globe for clinical trials and research facilities. I’ve already been told surgery is not an option because the risk outweighs the benefit. Chemo and radiation are not options for this situation either. And at some point in the near future, I’m going to have to begin eliminating some of the bigger stressors in my life completely if I want to survive this thing.
I won’t post pictures of my brain because some people just don’t want to see that, even in the form of digital imaging in black and while. But I’ve seen my brain, and crazy enough it looks like a smiling lion. So I’ll take that as a sign that it’s a happy brain, it’s brave, and it’s got enough fight in it to overcome Mr. Miyagi’s holiday in my head.
I know many people look at my life, they look at all the traveling I’ve been fortunate enough to experience, and they think “Man, she’s lucky.” Yes, I am a fortunate woman, but remember that there’s always a balance in life. The scales have to even out before it’s all over. And I have been through some major crap people wouldn’t even believe. But that’s a bedtime story for another day. I just know that I’m due for even more awesomeness before I breathe my last breath. And that makes me, and my brain smile.
So what should I do? Should I find out what Mr. Miyagi’s been up to before…or after my next adventures? And maybe now, those who didn’t already know about Mr. Miyagi might understand about my gusto for life and not waiting around for tomorrow, or next week, or next year to grab opportunities or moments. That’s why when I find something that’s so good, so delicious, so awesome, I grab ahold of it immediately. I know some opportunities might not ever come my way in this lifetime again.
We can spend all day planning for tomorrow, but tomorrow isn’t guaranteed.
Wow, Shannon. That’s a tough one. Only you know which is the right choice. You’re already coping with uncertainty. Would more uncertainty add to your stress? Whichever way you go, I hope and pray for good test results.
I can’t tell you what to do re your latest results……if you know when you go to Scotland and the results are bad, well the whole trip will be overshadowed by the news. If you don’t know the results, you’ll be worrying about them sitting in that little envelope waiting for you back home anyway.
As for your job – it is stressful. You ‘ve helped many others in their hour of need over the years…now I think it’s time to help yourself. If it’s stressing you out – leave. If you ‘ve got a pension, that’s great.it might not be as much as in future years…..but what’s the point of that. Life is for living now! You’re resourceful, you’re dynamic….you’ll cope….I say leave the stress behind! And take up those wonderful opportunities that are there for you ……
Whatever you decide…..I wish you the very , very best of luck…and I’ll be waiting with you for those damn results….
A tough one indeed!
I can only pass on advice a late friend, who died from an inoperable brain tumour, once gave me.
‘Plan like you’re going to live for ever; live like you’re going to die tomorrow’
(Once had a similar, but much less significant happening; I left the envelope with exam results unopened when I went on holiday; as soon as I got back, the Boss said! ‘You’re improperly dressed! Get down the tailors and get another ring sewn on!’ And, that was the first I knew; I’d forgotten all about the envelope … and the exam!)
All I can say is you, Shannon, are the opposite of the cowardly lion and I so respect how you have handled all this. I’m sending positive shrinking vibes your way.
You are so amazing and smart. And somewhere inside you is the answer you already know. I will admit I am like you though, I get so impatient. The not knowing for me is so much more stressful. ((HUGS)) and many prayers.
Tattoo twin powers unite!!!! BAM!!!!! Did you feel that???? If so, now you know what to do:) If not, I will try again later. LOL I love you!!!!!
Go and live, enjoy, breathe in the good, and deal with what you can’t control when you get back!!!!
You’re brave and adventurous but also realistic. And resilient. Would not knowing make you feel anxious and preoccupied during your time away? Then maybe you need to find out before you leave. In any case, lots of prayers and love are being sent your way. Have an amazing time in Europe!
I guess the question is, what would make you less stressed? Knowing before you went, or worrying about it while you are gone?
I don’t know if it would reduce stress or increase it, but can you ask your doctor to email you a brief summary of results and then you can decide at any point to read it?
When I get stressed out I read books on Buddhism. And hit the treadmill. Both seem to help although probably for different reasons. I also find a belief in reincarnation helpful.
Enjoy your trip!
You have already dealt with more bad news than most people will in a life time. Obviously, you are strong enough to bear tremendous weights that would pulverize most people. I first thought, “yeah go on vacation, live it up, then see what is going on when you return”. But, I think it will hinder the fun of your trip if you wait. The results will be on your mind regardless of when you get them. Don’t let worries get in the way of a good time. You have already done that better than anyone I have ever known. You are going to go on your trip and give a 100% effort to a good time wether the news is bad or good. Human nature for most is to allow the negative possibilities override the optimistic possibilities. I believe you are plenty strong enough to deal with negative news. But, if the news is positive, You set out on your excursion with a lighter heart. If not positive, then so be it. We should all thank God for the time allowed here. Yesterday is history, tomorrow is a mystery. Today is a present given to us by God. It is up to us as to what we do with it. We can be a turd and think we will get another one tomorrow, or we can be grateful for each day as if it could be our last great opportunity. You have been taking advantage of every present presented to you. Don’t stop until you are forced to. The anticipation of uncertain news is very stressful especially when it is big news. You are plenty strong enough deal with what ever comes your way. You inspire people to be stronger than what they are. Your life, regardless of when it is over, will be looked to as a template of how to live strong. You inspire me! I hope you look back at things you have written and inspire yourself as you do others.
Shannon,
You are a vivacious young woman full of life. Even when you might have a life threatening health problem you continue to amaze me with your strength and stamina. Don’t ever put your dreams aside, they can pull through tough times. Do what you can to reduce your stress whether that means opening the envelope before you go or once you return.
I have always lived my life out loud. Before social media grabbed me around the neck and made me a shameless sharer (LOL), I traveled, ate out, danced…everything. And I shared with my friends and anyone else who would listen because I’m excited about life. Still am. Just so happens I get to tell a lot more people about it now. =)
My mother recently told me that I’ve always lived in the moment. She told me that when we were “making up”. I told her that I could leave the world at any moment and I didn’t want to always be at odds with her. Living life with regret, as you have made plain, is no way to live. =)
I was diagnosed with a rare autoimmune disorder 9 years ago; 30 day hospital stay, every invasive procedure known to mankind, dialysis, etc. (You get the picture.) It wasn’t until a few days ago – when Robin Roberts was sharing her medical journey with the world – that I gave myself permission not to be afraid anymore. I have been living in fear for 9 years. I’m so tired of that.
My doctor tells me that at some point I will have to go back on dialysis and get a kidney transplant. Egads. Two months ago, I could not have typed that out loud. It brings tears to my eyes to think about it. So mostly, I don’t. But I’m not in denial anymore….which is good.
I know we don’t know each other (I’m an online friend of Lola’s), but – since you asked – get the test before you go. I have learned over the years that there is power in Knowing. I could say a lot more; but I won’t.
My best to you. To all of us.
Tracey
That’s a tough one Shannon! To know or not to know … Could the headaches be a result of Mr. Myagi shrinking so fast? If that’s the case, I think I’d like to know in advance. If the headaches are a sign that he’s puffing up, well, maybe you already know the answer.
Lovely lady, you’ll want to know. I think I know you well enough to say that you’ll want the info. I know I would. The trick, though, is not to let it overshadow your trip to Scotland – no matter what the outcome. If it has continued to somehow miraculously shrink, does that mean you wouldn’t take a chance, or seek out an adventure, or make a tough decision? If it has continued to grow, does that mean you wouldn’t take a chance, or seek out an adventure, or make a tough decision?
Over the past couple of years, you have experienced some incredible things and places. You’ve met some incredible people. You’ve seen more of your dreams come true. You’ve watched your two children grow into incredible young adults. None of that will change, no matter the outcome. Get the results. Take them in. Then continue to life as if every day were your last. Life is precious for each of us and we don’t know what the next day – or even the next hour – brings. Don’t live with regret. Live for SHANNON!