I HATE November 8th!

 Well the title says it all...I truly dislike November 8th.  I have tried to do things that make me happy on that day to try and get rid of my distaste for it, but it hasn't worked.  November should be a good month - it's my birthday month, the month before Christmas and the weather usually cooperates.  It's also the month that I was officially diagnosed with Breast Cancer.

Three years.  It's been three years since my roller coaster started; three years since I've felt carefree; three years since I've gone to a doctors appointment and not had a panic attack about what they will say; three years since I've had a weird pain and not worried that it was more than just a normal ache; three years sine I've felt settled and comfortable in my skin; three years since I've felt like me.  

But here is the kicker - my roller coaster has not just been about my cancer diagnosis.  That was just the day that kicked off this three years of weirdness.  It feels like once every year, something happens that makes all the anxiety I feel about my health bubble up again.  In three years I've had the big C (surgery and chemo), a craniotomy to have a brain tumor removed, a ruptured brain aneurysm and the discovery of a second aneurysm I have to have dealt with.  I actually had a doctor say "Wow you've had alot of things in a short time that could have been tragic"...ya thanks doc!!

The aneuryms were the most recent, and oddly the most difficult for me.  Harder than surgeries, harder than chemo, harder than the fog they have both created.  Why you ask??  Because it was completely unexpected.  It caught us all off guard - and all my fears and panic over the last three years came to a head.  It was something that we couldn't plan for and we couldn't talk about the outcome of.  It scared the shit out of me (and those around me I'm told).  If you are wondering how you know if you have a brain bleed, trust me you will know.  It felt like a major league slugger wound up and hit me in the back of the head with a baseball bat.  And then I remember little - except having to be in the hospital for 20 days for observation.  Was the least fun experience I have ever had.

So now I have to try not to have my anxiety sky rocket every time I have a pain in my head, or a panic attack every time I feel like I just can't do anything else cause I'm so tired.  And I now have to actually admit that alot has happened and the time I need to recuperate cannot be measured.  My body and my brain still have days where they are like NOPE...not doing anything productive today; they have days where they are angry (I don't know if that is an official medical term but the neuro guys used it often to describe my brain).  Days where I literally could sleep or zone out for 12 hours straight.  That may not be practical, but I'm learning that if I don't listen to what my body and head tell me, the following days are not very much fun.  

So here is my plan.  I have recently re-discovered my love for crafting so I will spend more time in my craft room because it calms me.  I will not sweat the small stuff.  I will try REALLY hard to keep my anxiety in check and not let it define me - but I will not suppress it if it does come.  I will continue to try and focus on the things that are really important...family, friends and trying to smile every day. And on the days when I can't feel like I can function, I won't.  I will curl up with a book or a movie, or just crawl into my bed and sleep.  And I will not feel one ounce of guilt doing it, nor will I feel like I need to explain it to people.  This is no one's roller coaster but mine (although I appreciate those that come along for the ride with me LOL). 

November 8th will still bear the brunt of my hate cause it was the start of the craziness - plus I don't want to have to hate more than one day a year.  But on November 9th I'll pick myself up and put one foot in front of the other - unless I'm tired then you will find me napping :-)

As an aside, please don't feel sorry for me.  I have a ton in my life that I am grateful for.  A husband who didn't ask for the crazy, but has been through it all with me and continues to make me laugh; kids who are happy and healthy and who are becoming more amazing young ladies with every day that passes; family that literally drops everything when they get a call that we need help and that help hold me together when I need it; friends that I honestly consider family and could not do without.  Sometimes I feel like I don't deserve to have so many good people in my life, but I will hold tightly to every one of them and work to never take them for granted.  My life is good but just has a few speedbumps along the way. But that's ok - it keeps life interesting.  But if the universe is listening, I'd really like a boring life for a little while please.

Take care all....
J

Masks we wear

It's been a couple of months since I popped in here.  I went back and re-read my last post, and really wish I could say that all the angst that was there is gone.  In short, it's not.  I truly cannot believe how long all this stuff is hanging on.  The good news is I have gotten better about voicing when I need space, and about saying no if I just can't muster the energy to go out. 

What has hit me more in the last couple of months is the look I get from people when I tell them I am not yet back at work.  I always get "but you look fine".  If you want to make someone going through mental illness agitated, tell them they look fine.  On top of feeling like you have to explain, the feelings of guilt associated with not being whole yet set in at a whole new level.  For me, what I wish people would understand is that I've become a master of faking it.  I can slap a smile on my face and head out for dinner; I can cheer at my daughter's cheerleading practices and competitions; I can keep things in order most of the time as long as I have a list; I can hide the days that make this whole thing the hardest thing I've ever been through.

What people don't see are the days when a panic attack takes over and I literally have to call my husband just to talk me down; they don't see the multitude of tears that are shed because I'm tired of dealing with this shit or for no reason at all; they don't experience the wrath of my short fuse or swing of emotions; they don't see me struggle to get up the stairs because my joints feel like they are on fire all the time; they don't see that smiling daily sometimes doesn't happen - because I fake it. I'm not looking for sympathy (in fact please don't feel sorry for me), but I want people to understand why the phrase "you look fine" upsets me.

The thing is, I'm tired of feeling guilty or trying to explain when people don't get why I say I'm not ok.  I don't owe anyone an explanation cause, honestly, the people that see me daily do see me with my mask off.  My husband is a rockstar - he gets it and just hugs me (or leaves me alone - he can tell when to do which) until the crazy has passed.  My kids have come to understand that most time my short fuse doesn't have to do with them (apologies go a long way in making sure they know it's not about them).

Even with the cuckoo that can take over, I am trying.  I have, however, gotten a new perspective.  I was the person that always said "just decide to be happy" or "don't stress about things that are our of your control or that you cannot change".  Man I must have sounded like an idiot to those I was saying it to. I have tried getting up in the morning and "deciding" to be happy; I've tried meditating to let go of the things I cannot control; I've tried shaking off the feelings of inadequacy, I've tried just moving on and applying the tricks that help discover the new me (also decided I hate that term).  You know what happens when I try to do this?  I feel worse cause it doesn't work and I spiral.  Then I get mad cause I'm like WTF is wrong with me??  For me, right now, this doesn't work.

Having said all this, things seem to be a little bit better.  Headaches are still a thing; memory loss is still a thing; pain is sticking around; concentration and retention of information are nowhere to be found; fatigue has set up camp in my bones; the feeling of meh persists.  But I did find myself sitting around the dinner table laughing while my kiddos danced and hubby told stories.  Seems like a small thing, but laughing made me feel a tiny bit normal. I think moving forward I will put myself in situations where laughter prevails - and the tears become tears of joy.  Fingers crossed!!

Thanks for everyone who listens to (or reads) my rants.  It is appreciated and it does help me :-)  With any luck, they will turn into "I'm ready to take on the world" posts in the near future - although my next post may be lots of reminiscing about my babies - I'll be sending my oldest off to university in September and I already feel verklempt.

J

This time of year...

Hey all!  So this will be more like a brain dump that a well thought out post - I feel like I just need to get it out.  Maybe that is the first step to truly moving on. 
Two things: 
1.  No one panic - everything is fine medically
2.  There will be some swearing so apologizing in advance

Here goes - I fucking hate November.  Is it possible to truly regret the onset of a month? To physically want to punch it right in the face?? That's how I feel.  I used to like month 11 - it's my birthday month (which inevitably meant time with friends and a few cocktails); it was the calm before the lead up to the craziness of Christmas, and it was usually the month where we got a light dusting of snow that made everything look like a story book.  It was a good month!

Then the cancer diagnosis had to go and fucking ruin it.  For the second year in a row, I feel like I need to cower as the month comes closer.  I want to just stick my head in the sand - it actually crossed my mind that if I went to a different time zone I could delay the onset.  But no matter what I did it came anyway LOL  And of course this month was when I had my 3 month follow up with the neurosurgeon.  I wasn't expecting anything to be wrong - but then again I wasn't expecting breast cancer either.  That little voice in the back of my head kept me wondering if there wouldn't be something else that showed up.  That appointment was today, and happy to report that everything looks good.  Back in a year to monitor.  You would think that would make me happy - ecstatic really.  But I got nothing.  I felt relieved for sure, but I didn't get that joyous feeling I expect with good news.

Was I disappointed I didn't want to shed tears of joy?  Yes.  Was I surprised? No.  These days my emotions have been all over the place.  So weird for me...I was always pretty level headed and rarely let my emotions get the better of me in public.  I considered myself solid.  And now?  What is the exact opposite of solid?? My emotions range from feeling nothing to crying - and rarely move to joy.  I miss it.  I miss feeling light hearted and ready to take on the world.  I miss laughing hysterically like I don't have a care in the world.  I miss me.  I am pissed that she hasn't come back now that everything seems to be mended. What the fuck is she waiting for?  I'll roll out the red carpet if that makes her skip back into existence. Just hurry the crap up already!!

The reality?  There are days where the only reason I get out of bed is because I have to drive my kids to school.  There are days when it is wayyyy easier to sit and watch mindless TV than to try and engage in conversation. There are days when it takes everything in me to put together a coherent email or text, and I pray that noone calls to talk to me in person - I just cant' do it. So far the last few months, I have cried for no reason; I have walked in to the hospital feeling fine only to have random tears stream down my face; I have had multiple panic attacks that I cannot attribute to anything specific; I have yelled and lost my mind with the people I love and I can't explain to them why. I have said out loud that I can't do this (not sure what this is, but in that moment this is everything).  I have tried to engage in things only to feel like a failure because I don't want to be there.  My reality right now isn't me - but I am living it.  Such a mind fuck.

I have been told I need to just take the time I need.  That the symptoms of PTSD need time to be dealt with.  It has taken me some time to recognize what is going on for what it is.  Someone put it into perspective for me recently.  They reminded me that in the last 18 months I've had to deal with two traumatic events that, at their worst, could have turned out way differntly than it did.  And I use the term "deal" in the lightest way.  I haven't dealt with anything.  I've been faking my way through things and trying to wish being ok into reality.  And I've been feeling guilty for having to fake my way through.  I have so much more that some others - family and friends that never waiver and hold me up always; a roof over my head and food on my table; prescriptions and medical care covered so I don't have to worry.  All that is missing is me.  The real me.  The new me.  Whatever the fuck that she.

Don't have it figured out yet, and I am working on it.  I'm relying on my medical team to help me get through this part as awesomely as they helped me get through the physical part.  I am going to continue to lean on family and friends - please be patient with me.  There are time where my smile will look fake, or when I say I just don't have the energy to be there.  Keep asking please.  In the (hopefully) near future, some version of me will emerge.  This version will be a fiercely loyal friend who has a new perspective on what is important; this version will want to laugh until her sides hurt; this version may want to go for a few cocktails just to feel giddy; this version will be ready to take on the world and whatever it throws at her.  She's just not here yet.  But she is coming - that I promise.

Thank you again to everyone for support and love.  It means the world.  For now I will spend my energy on looking forward, but living in the present.  I will do everything in my power to make this new me fucking fabulous.  Watch out world - or at least watch out family and friends LOL.

J

Just a quick check in!

Hi everyone!
Wanted to check in quickly and thank everyone for the positive vibes being sent my way - they seem to have done the trick.  Brain surgery was on Thursday, and I was sleeping in my own bed by Sunday night.  I have marvelled at every step what the body is capable of.  Who would have thunk that 3 nights after cutting open my skull I would be sleeping on my own pillow...so weird.

Goes with what I was told though - this one went off without a real hitch.  The hardest part was moving for 2 nights while connected to the leads that monitored my health.  I couldn't move, couldn't walk, couldn't sleep.  Day 2 was the hardest - nauseous (expected), mild headache (expected), elevated blood pressure (not expected but not terrible).  Once that night passed, I started feeling immensely better.  Got disconnected on Saturday and was able to move from bed to chair (YAY freedom!!).  The hard part after that was the boredom.  I never actually got into a room which meant I spent time in the OR recovery space.  No phone, no TV, no visitors - moving from bed to chair at a snailspeed pace.  So when the offer to go home on Sunday came I jumped at it.  Immediately felt better!

Not to say wasn't scared out of my mind.  Home on day 4???  Was this normal?  Would it be ok?  Truth is it absolutely would because I have a rockstar of a hubby who had everything under control even when I was freaking out a bit.  So here I sit - today is the first day where I feel tired and in a bit of pain.  Pain is a weird thing though...my last 2 surgeries were way worse in terms of recovery.  This one I'm on regualr Tylenol and just have to remember not to move my head too quit.  The most annoying part is the staples in my head that I sometimes forget are there.  Get them out at the end of the month, then a follow up.  That's it.  Well we wait for the pathology results to make sure its nothing but the surgeon has already said he is confident so going with that!!

For now I'm taking the summer to recover, reconnect with me, family and friends, and to figure out what is next.  I figure the last 2 years counts as my share, and it's done for awhile so I'm going to go with that.

As for everything else, I am thankful for technology so I can keep up to date with my girl who is in Ireland doing summer school.  She is pretty stressed about completing everything, but in my eyes she is amazing.  At 16 she headed to a foreign country for 4 weeks, knowing no one who was going.  She is homesick and hates not being here, but I know she is enjoying pieces of it.  I know she will thank us that she got to go, and I know I'm super jealous I can't be there.  Will live vicariously through her for now. And will remind her everyday that she's got this - I will believe for her.  And hell...if she doesn't get the mark she wants she has options - but she will never forget her first trip to the green hills.  I admire her - and if she can do that, I can recover so when she gets home we can talk all night :-)

Cheers everyone!
J

What a week!

This week has already been an eventful one.  I sent my oldest off on an amazing adventure (for the record I already miss her like crazy).  She is gone to do summer school in Ireland - we figured if she was choosing to reach ahead and get her Grade 12 English credit, she might as well do it in Ireland :-)

Sending her through security at the airport was hard, but at her request I did not cry.  I watched her walk through with confidence and chatting with the friends she had just met, and all I felt was pride.  Man this girl has come far...from the kid who I worried about constantly to this young woman who is tackling everything she has to head on.  I can't wait to hear all her stories when she is back in August!

Now for the part that I'm starting to freak out about - surgery is Thursday.  It has really been surreal up until now.  I never really processed that they were going to open my skull and remove something from my brain.  Even saying "brain surgery" was something I could not do with ease.

People have been asking me how I am doing.  I have been answering them honestly with "I'm fine; it will all be ok" - I really am fine.  I have felt calm about it all, and trust that the docs know what they are doing.  But this morning it really hit me.  It is taking everything in me to keep the panic at bay - lots of deep breaths and "you got this" mutterings in my head.  I am staying in control cause, to be honest, I'm afraid that once I really start to process it I will get completely overwhelmed.

I do believe that everything will be fine - I'm in the best hands I can be in.  I've been told what the recovery is like, and it doesn't sound too bad.  And I'm keeping a positive attitude because I believe that it helps.  And I have LOTS of support around me.  So really I am fine - but truth be told I am scared shitless about tomorrow.  Today is the first day the emotion of it all is sitting right under the surface - and I'm not sure I can keep it in check the whole day.  I am sure tonight will be a sleepless one, and I will likely lose it at some point.  If you happen to witness me starting to lose it, just give me a hug.  Or even better do something to make me laugh.  Or just stand beside me and know that I really am ok.  Gonna take more than this to knock me down!!

Will be pretty silent for awhile...talk to you all soon!

Julie

It's a date!

Well...I wish I was referring to a date where we were going away, or something exciting was going to happen.  Not that, but it's an important one nonetheless.

July 11th, 2019

That's the date that the neurosurgeon will remove this stupid thing in my head, and I can (fingers crossed) just get on with life.  It seems every time I hope to "move on" something happens that throws me for a loop.  So instead of "moving on" from things, I'm going to embrace them and move forward.  Well, maybe not embrace them but at least accept them :-)

Doc explained the surgery and the first part of the recovery (looks like I'll be in the hospital for 5-6 nights).  Not sure what recovery entails after that, but I assume it's just resting to get my strength back and more trips to the doc to make sure things are healing nicely.

In true Julie fashion, I haven't thought much about the specifics.  Every time I start to process the fact that I'm going for brain surgery, I get overwhelmed and shut the thoughts down. Maybe not the healthiest way, but it's how I'm dealing and that's ok.  I still haven't really had a meltdown (and haven't shown up on Sonia's porch with Malibu yet) - I do know it's coming.  We've been busy so procrastinating has been easy.  But it's coming I'm sure.  Hopefully it's not in a public place...the cashier at Loblaws may not appreciate a break down in their line up!

In any case, that's all I've got for now.  Going to enjoy the next couple of weeks, then will trust the doctors to do their thing.  In reality, that's all I can do.  Well that and continue to soak in any good vibes I can find.

J

Another Bump in the Road

So like many, I often struggle with how much to share on social media.  I ask myself often if sharing things is good or bad; am I putting too much out there.  Then I remember how writing about things helps me cope with what is going on in life - so I'm not questioning anymore.  I'm going to share the good, the bad and the ugly and what will be will be :-)

At my last check in, I talked about dealing (or not dealing) with all the one year markers that had happened.  Will admit, still wasn't entirely done coping with all the baggage the cancer journey left in my hands, but I did feel like I was moving forward and getting things somewhat under control.

I did, however, continue to have these nagging symptoms.  Dizziness, headaches, blurry vision, memory gaps, balance issues - all things I attributed to the medication that I was on as part of my continuing cancer treatment.  I mentioned them to my oncologist and, in his words "I'm sure it is the medication, but let's send you for a MRI just to make sure - but I am sure it is nothing".  To say I no longer trust the words "I'm sure it is nothing" is now an understatement.  These are the same words my doctor used before my cancer diagnosis.  I had convinced myself it was just part of the recovery process, but went for the MRI anyway.

I guess I should know by now that if a specialist calls you at 7 PM on a Tuesday night, it's probably not to tell you everything is good.  Another one of those calls to add to "moments you remember".  So here is the deal - it appears that the cancer is not back.  To say this is a huge relief for me would be an understatement.  I am genuinely thrilled that is doesn't seem to have spread - one point in the positive column.

The next part of the call was the kicker.  He told me they did find another tumor.  I kind of only got snippets of what he said after that - I was standing in the middle of St Laurent shopping centre with my girl and refused to get worked up over it.  What I did catch was it is called an meningioma, that 80% of the time they are benign and that a neuro specialist would be in touch.  I figured I would have to wait a bit for that call, but I guess once your in the system things move fast.  Got a call that Thursday and saw the neurosurgeon the following Wednesday.  For that week, I boxed it up and didn't think about it.

Then came Wednesday - off we went to another doctor.  Without all the details, essentially if you've got to get a brain tumor, this is the one you want.  He does not believe it is cancer, but will not know for sure until he looks at it under a microscope.  So that means he has to go into my brain to remove it (because of where it is, he cannot take a wait and see approach).  Is it weird that everyone was excited that this "bump in the road" was only brain surgery and not cancer??  Except hubby - he thought we were all crazy for saying it was good news LOL

The kids took it like troopers (as they always do), although I admit they both seem a little more stressed these days.  Has meant lots of hugs from us to assure them all is ok.  I'll take hugs from my teens anytime I can get them!

As for me, I'm kinda still ignoring it.  I still have the symptoms, but I haven't really dealt with the reality yet.  I'm sure it will come, especially once I have a surgery date (doc indicated it would be this summer at some point).  And I'm really good at procrastinating when I have to deal with the emotional part of all this.  I refuse to let the fear of what is coming (known and unknown) take over my daily life.  Not gonna lie - I am positive there will be a time where I will yell, cry and I may even throw things.  When this happens, I will lean on my family and my circle (heads up to my circle - I may show up on a porch with some Malibu at some point...don't ask questions, just join me :-) ).

To say hubby and I count our blessings with a little more gusto these days is an understatement.  We really don't sweat the small stuff (most of the time), and we fill our time with things we enjoy instead of focusing on the "must do" things.  It only took us 20 years of marriage, and a few medical issues to realize doing this is what would make us the most happy.

I'm sure there will be another post coming before the next step, but for now I'll just take all the good vibes and positive mojo you all can muster.  One day at a time...

J