Thursday, May 30, 2013

Picking Up The Puzzle Pieces

My life has been a bit nuts as of late, well the entire last year, but more so in the last week.  It all started Saturday when I was in Kent wondering around the garden centre.  One of the more maddening things that has happened to me since surgery is, I can't remember the names of plants or shrubs in my garden anymore.  If you know me at all, you will understand how horrific this is to me.  If you don't know me, I will tell you, I love to garden and had become quit good at knowing the names of my dirt dwelling friends.

So as I wondered around the garden centre staring blankly at most shrubs, but remembering a few I started feeling off.  I can't tell you exactly how I felt, I just knew it wasn't right.  As we walked down the aisle it became all to familiar, this was a migraine, but not just any migraine.  This kind of migraine brought me to my knees in fear at work last summer, it caused me to have to pull over while driving as I could no longer see properly in November  This migraine affects only my right eye (the one with the damaged nerve that requires the prism)  It is like someone has taken a piece of the puzzle out of my visual field, it is way more then just an aura, it is loss of sight.
I took the keys from T Jay and my son's hand and headed for the car.  Once inside I closed my eyes, if I don't have to look, then I don't have to "not" see.  T Jay was right out and we headed for home, becoming very nauseous during the drive.  I spent the rest of the day in bed.

Monday, was spent at the eye clinic where I was told that my eye was getting better and was able to down grade to a lesser prism.  Very exciting news.  I did tell the Opthamologist about the "puzzle piece migraine", I got a "hmm, we'll keep an eye on it" Not really sure what that means coming from an "eye" doctor.

Tuesday had us seeing Dr Mulroy at the Cancer Centre for the first time.  I didn't like entering that section of the hospital.  Even though I know I don't have cancer, and I am so grateful for that, it's just not a place I ever thought I would be.  I instantly, however, liked him.  Lovely and kind is the energy he gives off, which tells me he is in the right profession.   A profession I am sure, must be extremely difficult at times. The information he had for us however, was not quit what I expected (see...lesson number one in having a brain tumour, expect nothing.  I still haven't mastered this life lesson)  I was expecting to hear what my Neurosurgeon said which was the following:  I'm no longer a candidate for surgery therefore, we should look at radiation.  It would most likely be one dose, which doesn't shrink your tumour, but stops it from growing.    Instead I heard my new Doctor say the following:  "You are no longer a candidate for surgery therefore, we should look at your option for radiation which we would do once a day for five weeks".  WHAT?   What did he just say as my tiny hand and brain work together to do the math on my fingers like a 7 year old.  5 10 15 20 25?  25 treatments?  What happened to the 1?  As he continues to talk about the fitting of the face mask, another MRI and CT scan and the timing of all of this to be in about six month.  I am still wondering where the "1" went that my Neurosurgeon talked about.  He then told us about the risks that are involved which include getting a brain tumour.   My dry scene of humor can't help itself and blurts out, "well since I already have one of those what would you do if I was your mother or if you were me", his response, "prepare for radiation is 6 months".   "You  have a tumour that figured out how to grow to a significant size already, we don't have the answers on how long that took or if it will continue"  He also spoke about the fact that radiation does indeed slow the growth of tumour cells and CAN shrink a tumour size.  I hear this and it registers in my head but I'm still so caught up on the 25 that I can't get it together to ask why one Doctor said it doesn't shrink a tumour and he, another Doctor is saying that it does.  All I do is continue to listen to him answer all of T Jay's questions.  These are all questions that I have in my head but I'm now back to information overload and I just shut down to protect my sanity.  This is the most amazing thing about T Jay and I, we work like we are one, our souls are connected at a level that is indescribable.  He picks up on non verbal clues and takes over right where my brain has left off, or in most of these cases shuts down.

 Today is now Thursday and I still don't feel right.  As excited as I am to be down to 400mg of Gabapentin, my face is starting to act up.  Each day getting worse, the crazy thing is I can't feel the right side of my face, yet I can tell you right now where each one of the three branches of the trigeminal nerve are.  There is an intense pressure building and a zipping going through my teeth that I am on high alert that the debilitating shock of trigeminal neuralgia is only moments away.  Yesterday I went back into living in fear.

So since lesson number one is "to expect nothing" lesson number two is once again "be grateful."  I am lucky to be in a position that my tumour is not cancer.  This allows another 6 months of healing to happen before radiation is to begin.  If it was cancer, I am sure I would be well underway.  I'm grateful to be under the care of another new Doctor, one who is also understanding and kind.  I am however, the most grateful for T Jay.  He is my go to, my shoulder to cry on, my person who takes the brunt of my questions that don't have any answers. He listens, he helps, he understands but most of all he is right there with me on a journey that seems so endless.  He is there to try and help me put the scattered pieces together from a puzzle box without a picture.

Friday, May 24, 2013

Smarty Pants

I'm currently down to only 400mg of Gaba now.  Exciting, as of course the hope is to come off this medication completely.  This has caused two things to happen.  First, I no longer feel like a walking druggy.  I've spent the last year fairly medicated and felt I was walking around in a medicated fog.  Second, I'm started to feel things a bit more, sadly the "things" are pains.  The crainiectomy or permanent hole in my head hurts, as does part of the incision.  Now this could also be something else,  nerve regeneration. That whole side of my head has been numb since surgery, yet I feel pain.  So I'm not really sure if it's because I'm coming of the meds or my nerves are healing.  I many never know.  I do know that "brain itch" is still part of my life almost daily and could truly cause a sane person to loose their marbles.  Imagine 1000's of ants crawling under your scalp, all over your head and face, that's brain itch.  The only thing that seems to sooth it is heat.  I've become very friendly with my magic bag.

I'm preparing for an upcoming busy week.  Back to the eye clinic, who will hopefully lessen my prism strength.  Even though you have an appointment there, you need to prepare for the entire afternoon.  It's an odd place because everyone waiting there has vision issues.  So not to many people are reading obviously, and everyone is doing the same thing....people watching.  Lots of fun but can make for some awkward moments.

I also have a massage appointment to try and fix this neck pain I'm still experiencing from having my head tilted for so long.  I'm trying a different type of massage, as all the others haven't seemed to helped.

Then we are off to Dr Mulroy a Radiation Oncologist to discuss possible radiation treatment.  My Neurosurgeon recommends it but I want to hear what he has to say.  Apparently since I'm so young (41) and I still have a brain tumour, radiation might help to "delay" it's growth.  We were told that radiation doesn't shrink a tumour but rather stop it from growing.  Huh, who knew?  I guess we will find out more on Tuesday.

All of these appointment and new information given, wipes me out.  At the beginning of my recovery I couldn't sleep.  It was like I was afraid to sleep or just didn't want to miss anything in my recovery.  Now it's all I do.  I'm exhausted all the time.  I do, however, acknowledge that I am starting to do a bit more.  Laundry, sweeping, washing floors, even trying to weed my sad flower beds.  These activities prior to brain surgery would have all been done in one day after working 8 hours.  Now, one activity equals one nap.  I've stopped fighting it and surrender to my body's need.

I've come to realize that the brain is so much more then the main computer of the body, it is the body.  I always thought I had some control but the truth is I only have influence.  If the body wants to grow a tumour, it will, if it wants to get arthritis, it will, if it wants to get into perfect shape, it will.  The only thing we can control are the influences, smoking, drinking, going to the gym etc.  And even with all these influences both good and bad, the brain will end up doing what it wants in the end anyway.  I asked T Jay one day, "if the brain is so smart then why didn't it tell me I had a brain tumour" and he simply said "it did"  Hmmm, I pondered that for a few days, and thought yup he's right it sure did, I just wasn't listening.  So now I call him "Smarty Pants" you can decide if I'm referring to my brain or T Jay :)

Monday, May 20, 2013

Happy Trigeminal Neuralgia Anniversary to Me

The Bluenose Marathon was held this weekend in our amazing city of Halifax, NS.  Thousand of people including children gather to run or walk various distances.  I'm so proud of all my friends who accomplished their goals this year.

I had the pleasure last May 20th to attend as a spectator to cheer on some friends.  I was blown away by how many people I actually knew there.  The energy at the finish line is contagious, you just can't help but get caught up in every one's adrenaline and happiness.  That evening I went to my friend Jen's house for a BBQ.  Jen, who is also a runner but didn't participate in the Bluenose was soon making plans for us to run the 10K in 2013 .  Jen and I were gym and trail walking buddies.  She would push me hard enough to hate and love her all at the same time.  I didn't get to the gym as much as I would have liked with Jen anymore.   By early spring I was feeling horrible during and after a work out.  Horrible enough to speak to my doctor about it.  So Jen and I took up walking the local trails, 5k several times a week.  I still didn't feel the best during or after these walks but it was better then the gym!!

Jen was convinced she could have me running 10k no problem for the next Bluenose, "we'll start tonight" she said 2 minutes of running, two of walking.  I remember feeling pretty much the same way I felt at the gym except I remember my ear hurting.  After getting back to her house we started our evening BBQ and my life as I knew it changed with taking the first bite of my hamburger.  The most excruciating pain I ever felt in my life.  Oh no, there is something wrong with my tooth or teeth I couldn't tell where exactly the pain was, I just knew I couldn't eat anymore.  Within ten minutes I needed to go home.  The pain continued and by Monday I was begging to get in to see my dentist.  I could barely open my mouth for the x-rays as I was being shocked with pain again and again.  My Dentist found nothing and said he would have to send me to see a specialist. The shocks to my face continued, everyday more and more.  I couldn't eat, talk, brush my teeth even washing my face was painful.  You have to understand this is like receiving an electric shock, a taser, a thousand elastic bands hitting you all at the same time  I started keeping track of how many times a day this was happening to me.  By May 31st I was getting 56 shocks a day and by June 2nd it had climbed to 188.  I stopped keeping track when it was over 300 a day.

Enough is enough, after desperately doing my own research  I went back to my family doctor and said I think I have Trigeminal neuralgia.  He agreed it was possible and said he would have to send me to see a Neurologist for further testing.  Three things usually cause Trigeminal Neuralgia, blood vessels pressing on the root of the nerve, a brain tumour or MS.  My Dr reassured me that he didn't think I had Multiple Sclerosis or a brain tumour, so we will send you off to see a specialist to rule out a compressed nerve.

There was approximately a 3 or 4 month waiting list to see my Neurologist as I hadn't been a patient of his for over a year.  I very calmly said to the receptionist, "you don't understand, I don't care what I have to do or where I have to go but I need to see him yesterday, I am going insane with this pain."  A call a few weeks later had me off to the Bridgewater Hospital (an hour drive) to see him at his clinic there.  He confirmed with Neurological testing in his office that he too didn't think I had a brain tumour or MS, that it was most likely a compressed nerve and lets start controlling the pain with meds until we get you an MRI, just to rule out all the "scary" stuff.  "I'll send you to Antigonish Hospital it's quicker he said"  I finally received a letter from them, October 2nd 2012.  October the 2nd?  That's months away, I will loose my mind by then.  My family Doctor tried to get me in sooner but their response was "I was not one of their patients so they were not able to move my appointment ahead, did I still want to keep my Oct appointment?" UMMM YES!!!! Now I have to admit I was treated well when I was at the Antigonish hospital.  However, I sure would like to have the name of whomever my Dr's office spoke to and personal show her/him my MRI results.  Maybe perhaps the brain tumour diagnoses might make them think twice about questioning a Dr's request to move an appointment forward.

On Oct 3rd our life changed forever, with the call of my diagnoses.  My life has consisted of nothing but life changing events, Doctors, specialist, test, surgery, recovery, MRI's, x-rays and even more specialist.  However, one life changing event that didn't happen that was supposed to, running the Bluenose Marathon this year.  Yesterday would have been my day if it wasn't for a brain tumour getting in the way.  There is one thing for sure that I have learned in this past year, you just never know what a year will bring.  So never say never, maybe 2014 is my year to run in the Bluenose, however 5k might be more up my ally.

Thursday, May 16, 2013

Playing Catch-up with Ketchup

Have you ever noticed that we are sometimes too quick to point out the negatives, find the faults or not willing to admit when we are wrong?   As we age and mature we should get better at embracing the positives, but unless you have mastered Buddhism, chances are good you still falter every now and then.  I like to call this faltering a funk, and I'm in one right now.  The great news is, I know I'm here, I recognize it, and I'm embracing it.

All this self embracing has a lot to do with my brain playing catch-up or as I call it now, ketchup brain. You know when you take a Heinz glass ketchup bottle and no matter how hard you smack the bottom, it will not come out.  Well, I feel like my head needs a few good smacks to try and get the words to flow.  I can't remember names, certain words or even what I was trying to say. I could name all the plants in my gardens, now I just stare at them, hoping they will scream at me "I'm an astilbe, a pink one, I was here last year, don't you remember!!!!"   I've searched other sites on brain tumours and brain surgery and it seems to be a common complaint.  Another thing that is also common are people who don't have a brain tumour or who haven't had brain surgery tend to say oh it's just because of your age, it happens to me too.  Which is extremely frustrating to all of us who are living in this brain tumour hell because it's more then age "this" has not just happened to you. I did not have ketchup brain before any of this, it's embarrassing and I really wish I knew a way to speed it up.  Hence part of my "funk", figuring out just how much my life has changed since Bubblegum and Honeycomb took up residency.

So putting ketchup brain aside, I knew I was falling into this funk by rereading my last post on Mother's day, "The Unbreakable Bond of Motherhood"  I wrote something that is only partly true and it very unfair.  Yes all my biological family lives in Quebec and Ontario, yes I was raising my kids pretty much on my own and yes I do have a Foster Family here in NS who I don't see much off.  However, they have helped me in many ways.  First off,  they instilled the values in me that I teach my kids today.  Growing up as a child/teen in a house of abuse, I wouldn't be the person I am today if it wasn't for being saved at the age of 15 by my Foster Family.  My Foster Dad John, is the first man who I ever learned to trust, who showed me kindness, who walked me down the isle, who saved my ass when my mortgage fell through on the 11th hour.  He came into the hospital to see Haley and I when everyone else was scared to be around us because of the H1N1.  He brought Zack Popsicles when he had his tonsils out and he is the reason I got to spend my 40th birthday in Havana.  I can hardly call this "no help what so ever."  So as I said above about maturing and willing to admit when you are wrong, well this is one of them  I just had to knock some of the ketchup out of my brain to realize it.

Sunday, May 12, 2013

The Unbreakable Bond of Motherhood

Mother's Day, the day of reflection.  At least it is for me.  I like to spend Mother's Day going over the last 12 years in my head.  Memories of ewwy gooey paint, play-dough, first Christmas Concerts and in our family's case, the IWK Hospital.  Being a mom to a child/children who is/where sick is no different then any other mom, we just have more grey hair.

My first born is a Clomid baby (fertility drugs), and if you had to do any kind of fertility treatments you will understand the exhausting care and planning that is involved in trying to conceive   I spent a good part of my 20's in anger over women who just "happened" to get pregnant or called it a "mistake"  My infertility took over my life,    a devastating miscarriage at 16 weeks, then finally on Christmas Eve Day I found out I was pregnant again.  A pregnancy that was not routine by any means, led to a healthy baby girl weighing 7lbs 5oz.  Everything was fine until she was 2 days old when she had a terrible allergic reaction to the diapers in the hospital,  it was like someone poured hot water all over her diaper area.  Easy fix they told me, just change the diaper brand.  That reaction was just the start of years of trips to the ER, countless specialist, x-rays, blood test and antibiotics.

Haley was diagnosed with a condition called Hypogammaglobulinemia (THI) at the age of 1.  This is one of the better immune deficiencies you can have, their immune system kicks in around the age of 2 or 3 and they tend to live normal healthy lives. When Haley was 2 years plus a week she welcomed a baby brother into her life, he was not a Clomid baby, therefore, he was free :)  Zack, a chubby 7lb 4oz little guy was brought into our life at a point when Haley was constantly sick.  Being on Mat. leave certainly did help to limit the amount of germs she was exposed to but it was still difficult.  After returning to work for  about 2 months it was obvious that I had more sick calls then work time and quitting my job to care for my children was my only option.  I then opened my home to friend's children and became a day time Mommy to a handful of kids as their parents worked.  It was perfect, it allowed me to be home with both children, especially her, when she needed me most.  Some of my best memories are of being a mom and a "day time mommy"

As much as Haley should have been getting better according to her Doctors, simply due to age and immune system maturity, she wasn't.  Zack was not without his own illness as he would pick up a lot of what she had.  He however, suffered from his own problem, digestive issues. Why do they both have digestive problems?     This is when I began to really do my research.  I swear I'm a MD, I just don't have the paper to prove it...self taught all the way. I became fascinated with how the immune system worked, why are they doing this blood test, why does she get the same repeated illness time and time again?  You have to understand Haley was sick ALL THE TIME, ear infection, lung infections, Pneumonia, chronic bronchitis,  bad gastrointestinal issues, measles, E coli, roseola so many times I'd lost count, all of this before the age of three.  She had an Immunologist Dr Izzukutz at the IWK and still does to this day, a Pediatrician, Dr Blake who was amazing and Haley knew who at the lab she wanted taking her blood and who she didn't.  All of this time spent in hospital and researching of blood types and cells led me to return to school to became a Phlebotomist.

While studying one night after a very long day of Zack not feeling well because of his tummy and she was starting to get sick, spiking a high fever, we had a horrible scare.  Haley and Zack's dad (Todd, my ex husband) works on the oil rigs and had just returned home from a long stint away.  As we tried to settle her, Zack, at the age of 3 was insistent that he needed to use the toilet.  From her room to the bathroom to her room I hear, "Mommy the poop won't come out" and there is my son sitting on the toilet with his bowels hanging out of his body.  I panicked, as Todd called the IWK and after EVERYTHING I had been through with Haley, I had no idea what to do. Upon instruction to bring him into EMERG by car since he was not bleeding I did what I was told.  It was the first time I had to choose which sick kid to be with, I never want to have to make that choice ever again.  I was told in EMERG that he had a prolapsed bowel, off to the IWK the following day to see a bowel specialist and testing for CF.  Apparently this can show up in patients with Cystic Fibrosis.  I was so thankful that the sweat test (to test for CF) came back negative but now I was taking Zack to regular IWK appointments to see Dr. Blake and a bowel specialist.  He was now taking a drug called Peg 3350, truly a miracle drug for his issues.  I felt between the two of them we spent more time at the IWK, for appointments, then we did at home.

Through all this I continued to study, caring for my kids pretty much on my own due to my Ex's work and at this point my marriage fell apart. I have absolutely no help of any kind here in Nova Scotia as all my biological family live in Quebec and Ontario.  (I do have a foster family here in Nova Scotia but we don't see much of one another)   I was on my own so I finished school and the kids and I moved to the city. I very quickly created a network of friends who to this day I call my family and would bend over backwards to help them.  I started working at our adult hospital on a casual basis and my fascination and amazement at how all that is wrong with the body can almost always be found through a blood test was born. I love my job and miss it that I'm off.

There were many sick calls at my new job as Haley's illnesses continued.  However, now there seemed to be a gap in between them, finally small breaks where she was healthy.  In 2009 the H1N1 scare hit Nova Scotia.  As a health care worker we were given the vaccine early to prevent us from getting sick.  I remember saying to a co-worker I have to get this vaccine, if I bring this home to Haley it will kill her.  And kill her it almost did.  She fell ill on a Thursday night, I will never forget this. Like any other time she awoke with a high fever she would come and crawl into bed with me but this time she was in horrible pain, complaining that her back hurt.  Through every chest infection she's had I've never heard this child complain of pain.  By Sunday we had been admitted to hospital with the confirmation through nasal fluid testing that she did indeed have H1N1.  7 Days later we were in PICU having a chest tube inserted, her plural cavity on the left side had completely filled with fluid.  There was no air entry in her left lung, her kidneys were not working properly, blood work every 4 hours, pneumonia from the H1N1, then bacterial pneumonia on top of that, and a constant fever, that by the end of this horrific illness, lasted over 14 days.  It was by far the scariest time in my life, I was helpless and at the mercy of health care professional who were learning as they went along due to the unknown characteristic of this illness. Haley's Dad took time off work to be with Zack and us.  He would drop Zack off at school and come into the hospital for the day until it was time to pick him up again.  He would bring me food and sit with her while I used the "family" shower down the hall.  I felt even being away from her for that 20 minutes was too long. Thank God Todd's work was very understanding giving him the time off he needed.  After two weeks in hospital she pulled through but, it took a couple of months of recovery before she was back to her normal self.  During this time I can't even begin to say enough about my amazing co-workers, my employer, my friends and family who helped us get though it.

We've had the "normal Haley illness" sudden onset of fevers, chest infections, sinus etc since then but nothing as scary as H1N1.  She has annual check ups with her Immunologist, who confirm year after year that her immune system is just not the same as others.  She's a fighter like her mom and oddly enough she has only been really sick 4 or 5 times in the past 12 months.  Like I've said in a past blog, one at a time in this house.

I'm Happy to report that other then a tonsillectomy from too many strep throats when Zack was 7, he is a healthy 10 year old now.

I'm blessed on this mothers day to be able to reflect back on all my hard work.  I have two AMAZING kids who "get it" because they've had to.  They are not whinny or sulky, they are caring and kind all because life threw them some curve balls.  They have a Mother who through all of this crazy madness never gave up, or gave in.  I've taught them to embrace it all and keep going.  Life is not easy, it's not supposed to be, but together we have proven that we can get through anything.  Now that the tables have turned somewhat and I'm the sick one, I have no doubt in my mind they will be by my side every step of the way, we have created an unbreakable bond.

Saturday, May 11, 2013

Spring Sprint...or Crawl

Four months ago today we tried to give Bubblegum and Honeycomb their eviction notice, unsuccessfully I might add, so from this day on I will call these days (the 11th of the month) my post op birthdays. I get to celebrate my post op birthday is an amazing way, I'm going to attempt the Spring Sprint for the Brain Tumour Foundation of Canada.  It's a 2.5 or a 5km walk to raise awareness and much needed funds for Brain Tumour research.  I am very excited to do this but very nervous.  My balance and co-ordination is much worse around moving objects (other people in this case) AND that's a long walk.  Certainly is strange thinking 2.5km is a long way since before surgery I walked 5km almost nightly.  However, under the circumstances I won't beat myself up over it and will be back to long walks in due time....(there's that word again....TIME)
So, with T Jay, my amazing kids, my best friend, and one of my sweetest co-workers by my side we will set out this morning and see what we can do.  Thanks to all who supported us, Bubblegum and Honeycomb (my brain tenants) thank you!!!  :)

Wednesday, May 8, 2013

Friends Have the Best "Piggy Backs"

It's finally Spring here in Nova Scotia and today is the first day I felt the warm sun on my back deck.  As I write this the birds are singing, I see neighbors walking and some of my bulbs are starting to bloom.  When I planted those bulbs last fall I never thought they would bring me so much joy after such a rough Winter.  Isn't nature amazing?

Well with this new season comes new appointments and some of my old favorites too.  My OT tomorrow, HR on Fri, physio next week.  A neck x-ray is new on my list, it just doesn't seem to want to snap back from surgery or my crazy head tilt.  It really is becoming a pain in the neck!!!  The last week of the month includes the Eye clinic, Radiation Oncology (another new one) and my daughter has an appointment with her Immunologist.  Have I ever mentioned that my daughter has an immune deficiency?  She was born with no IgA's low IgG's and low IgM's, it's been 12 years of trying to keep her healthy.  Funny thing is, she is having the healthiest year of her life while I'm falling apart.  One at a time I guess.  My sister's son was born with an immune deficiency as well even though they say it's not hereditary I have to wonder.  They say that about brain tumours too, I guess that's why research is needed.  Which is why I'm taking part in this Saturday's Spring Sprint for The Brain Tumour Foundation of Canada.  There won't be any sprinting on my part, in fact I'm very nervous about how my vision and perception will be with all those people not to mention it's a 2.5K walk.  I have some wonderful friends and of course my family walking with me so there are plenty of "piggy backs" to jump on if I need one...maybe we should bring a wagon (haha)....hmmm it's been a while since I've been pulled in a wagon, I'm game!!!

Monday, May 6, 2013

Love the New Me

This is a quote from a friend of mine who's brother went through two brain surgeries and is the only other person I know right now who understands what I'm going through.

 "Its not like other surgery were you have them and your all better after:( The brain is tricky it takes a really long time to heal. It must be hard because to the rest of us your doing so good but to you your just not yourself. You need to step back and see your self in our eyes. Even if you don't feel like the old you some days, just remember everyone loves the new you just the same:)) it's a long slow hill babe but you'll get there!! Always thinking of youyour in my prayers"

I'm not who I was before brain surgery nor do I think I will be that person again.  My outlook, my faith even my soul has been changed.  I might look good on the outside but struggle everyday with who's inside my head, the exhaustion I feel from the smallest tasks, the frustration I feel from loosing my independence.  I haven't accepted any of that yet, but for some reason I'm feeling pressure that I should just be "over it", "better" and "back to my old self."  Is is pressure from society or from myself?   A bit of both for sure but probably the latter.  I need to learn to love the new me and since it took me 40 years to love the last one I've got some work to do.

Friday, May 3, 2013

Have Tumour...Will Travel

We're back and Cuba for Christmas was fantastic. Certainly well worth all the hard work it took to save for our awesome vacation.  Seeing Cuba through your kids eyes is something I will never forget.  They were in awe of the culture and people just like I was last year.  I couldn't be more proud of their grace and kindness, I am one proud momma.

Having left the day after getting my MRI results I vowed not to think about anything she had to say to me.  Every time I caught myself wondering or asking myself the "what ifs" I'd turn to something of beauty and thanked God for the opportunity to be there to see it.  Of course I had my moments to myself on the beach or in the pool but I think I'm allowed those every once in a while.

The MRI was no surprise really, Honeycomb is still where he was and bubblegum looks like someone popped him.  Just a flat piece of gum stuck in my brain, she referred to that piece of gum as a "carpet", I hate carpet!!!  So I was expecting to her ask how things were going, like physio and my eye sight and she did but then the conversation very quickly turned to options.  Options?  what does that mean, what options?  I thought surgery was the option and then you recovered, got better, went back to work.  Hmmm, not the case.  She said that it made sense to think about radiation while the tumour is small, but of course it is my decision.  She would speak with her colleague about seeing me and providing me with more information.  As we left the office and began our vacation, T Jay and I thought I guess we'll see what they say down the road, it's only information after all.  Well after opening the mail the day after our return "down the road" is only three weeks away.  Geesh, I thought that's a short road, nothing like being thrown right back into it.  As I once again spent an hour or so processing new information in my inward withdrawn manner I thought suck it up.  Me, my family and my tumour just spent an amazing week South, that was my break.  And although I came back to full on appointments again how can you not count your blessings for what matters most, spending time with family.  Yes the vacation we had was not 100% of what I had in mind when I originally booked it before my diagnoses, it was better!!!  Watching them play in the surf, extending kindness to others and just hanging out.  It's going to take a lot more then a brain tumour to stop me from enjoying that.