On March 18, 2015 I was diagnosed with a brain tumour. As much as I would like to sit around and feel sorry for myself I have decided to join the movement to end brain tumours by taking part in Spring Sprint. I believe no one should hear the words, “you have a brain tumour”.

This is why I’m fundraising for Brain Tumour Foundation of Canada. Patients and families need information, support and education. We also need more research. There are too few treatments for this disease and survival needs to be improved.

Every dollar raised by Spring Sprint goes towards these goals.

Thank you for giving and, more importantly, for helping the 27 Canadians diagnosed daily with a brain tumour. You’re changing lives.

To support me in my walk against brain tumours please follow the link to donate http://www.springsprint.ca/site/TR/SpringSprint/General?px=1028237&pg=personal&fr_id=1217#.VUuliflVhHw.

Thank you.

The results are in, drum roll please. The bad news is that I still have a brain tumor, surprisingly he hasn`t disappeared as I secretly hoped he would. The good news is that he seems to be behaving himself. My neurosurgeon has scheduled my next appointment for the middle of June, which I also take to be a very good sign. Had he wanted to see me right away it would have been bad news. But I am not an overly patient, patient. So I went to see my GP for a Cole’s notes version of the MRI results. To be honest I was afraid that the MRI would discover that Timmy was part of a larger family of brain tumors, but that does not appear to be the case, at least no one has said hey looks like you are growing a tumor family in your brain. I take that to be a good sign. Timmy the tumor is however still there hanging onto my skull behind my left ear using my meninges as a blanket. He is described as an avidly enhancing extra-axial mass. Imagine for a second what Charlie Brown’s mother sounds like, wha, wha, wha, wha cause that`s how I feel when I read these reports. Which surprisingly my doctor’s keep giving me for my tumor scrap book. I really wish the reports came with pictures. I need a map that says ‘tumor is here’ with a big red dot. Timmy is measuring a little larger than in the CT scan, but I also know that Timmy was a little camera shy in his CT image. If the surgeon thinks that he will behave himself until the middle of June, I am fine with that.

Now that I have had both a CT and a MRI I really prefer the MRI. Or perhaps I preferred the MRI tech because sometimes people make all the difference, either way it is NOT scary. When I was called in for the MRI the tech went through a list of questions, including do I have shrapnel, or bullets lodged in my body, or metal shards in my eyes. I’m sure that those are very important questions but I couldn’t help laughing as she proceeded down the list. Thankfully I don’t have bullets, shrapnel and a brain tumor because that sounds like a very bad combo.

Thump, thump, thump, thump was all I could hear  as I stood there getting my instructions from the tech and I couldn’t help but ask whose heartbeat I could hear. I wasn’t hooked up to the machine yet, so it wasn’t me. She was like, heartbeat? I haven’t heard that one before. That’s the pump for MRI machine.

I hoped up on the table preparing to enter the giant womb with a heartbeat and all and I ask the tech about the contrast dye. For the CT scan I needed an IV so that they could insert contrast dye which makes you feel like you pee your pants when they inject it (not pleasant). She informed me that she would pull me out of the machine part way through and inject the dye with a needle, so no IV, that in itself was a win. I hate IV’s, they make me feel like a sick person, plus they make me itchy. As an added bonus her contrast dye doesn’t make you feel like you peed yourself, double win.

After a nice warm blanket and pillows for my knees I am ready to be strapped into the helmet. This is as close as I am ever going to get to wearing a sports helmet or any kind. The helmet is necessary so that I can’t move my head. I am literally strapped to a board. She puts in ear plugs for me and asks what kind of music I might like, seriously 5 star service. I opted for something light so that I wasn’t tempted to sing, or dance while I am supposed to be perfectly still. The helmet has a mirror so that I can see out of the MRI machine, it’s all a very cool technical experience. The inner science geek in me is totally enthralled by all of the technology.

She warns me that the MRI machine will be loud, and the bed will vibrate. I asked if it would be louder or rougher than riding inside a float plane, and no she assures me that it will not. So no big deal. She hands me a panic button which bears a striking resemblance to a nasal aspirator, gross. And into the heart-beating machine I go.

As I lie there I think of the last time that I have been told that I can do nothing except lie still for 45 minutes. No kids, no responsibilities, just lie there listen to music and do nothing. I think that it has been at least 6 years, and perhaps a lot longer than that. So I took a little 45 minute break from life as magnets pulled images from my brain.

When the magnets started working I could feel some pain in my tooth, the one with the crown. Once I realized what was happening I rationally told myself that she would have warned me about crowns (like the bullets and shrapnel) if they were a problem. When she pulled me out to inject the dye I mentioned it, and she said some people feel dental pain because of nerve sensitivity and other’s feel nothing. Maybe I should have mentioned that the dentist left part of the drill bit in my tooth, but that wasn’t on her list of questions. Anyway that was three root canals ago, so I’m sure it was just the post for my crown. After the whole thing was over my crown is still in place and I promised the tech I would be back for another spin on the MRI machine in the future.

If only a craniotomy could be as painless as getting a MRI. Now I patiently wait until the middle of June for the next step in this brain tumor adventure.

I stood in the rain the other day and didn’t even acknowledge it. At one point I did realize that water was dripping down my face, but I didn’t move.  I was just starring, and waiting. I remember thinking this isn’t so bad, why I have I never stood in the rain intentionally. I looked around and everyone around me had hoods and umbrella’s, and I just stood there a little longer feeling the rain on my face just because I can.

If you happen to see me and I am smiling more than normal, or I am more chatty than you remember, or I am standing in the rain there is a reason. I am happy to be alive. I am ecstatic that I wake up everyday. If I seem like I am no longer in a rush, it’s because I am not, I am not in a hurry to get anywhere, and I am not too busy. My brain tumor is making me a much nicer person. I have not however turned into a morning person so if you have the inkling to call before 9:00 am be warned. Should I start singing or dancing in the rain call the doctor because something is seriously wrong.

But don’t worry I haven’t gone too soft yet because that person that could be excruciatingly aggressive is lucking just below the surface ready to fight my brain invader with everything I have. On Thursday April 16th I go for a MRI to see how Timmy the tumor is doing. It would be wonderful if he is just shrunk away and they can’t find him, unfortunately I can often feel him pulsing letting me know that he is still there, but a girl can dream.

In my family if you need a “guy for that” you ask my brother-in-law Phil. He has a guy for everything, and his network stretches far beyond home repairs and renovations. Need your cappuccino maker fixed, he’s got a guy for that, beer tap installed in a fridge, he’s got a guy for that too. So I casually asked him if he happens to have a neurosurgeon. He said do you think my drywaller can do it? Hmmm, well it does involve patching, but no I don’t think that your dry waller can do brain surgery. And no I did not find the neurosurgeon on Kijiji.

I went to see the neurosurgeon last week, and I was very nervous going in to see him.  I had no idea what to expect.  Even though I had gotten some information from my sister-in-law about my brain tumor, I was still nervous.  As is the case in almost all medical situations there were forms to fill in.  But these were a little bit different.  After ticking the tumor box, and filling in the tumor type with brain tumor (which seemed to make it just a little more real) I flipped the page.  Do I have a penile implant, hmmm let me think about that one for a second, I don’t have a penis, so chances are I don’t have a penile implant.  Next question, do you have shards of metal in your eyes, God I hope not.  I couldn’t help questioning if I am I in the right office?  Then a little further down the page I put it all together, when I got to the “are you claustrophobic” question.  I feel for the guy that has to answer yes to tumor, penile implant, eyes filled with metal, and claustrophobia, that MRI machine might kill you.

The Neurosurgeon confirmed all that I had been told previously, which was a relief, and explained the next steps.  So the next step is an MRI which gives the doctor a 3D view of the tumor, providing a more exact location, an idea how quickly Timmy the tumor is growing and a better idea of how nicely he is playing with the surrounding nerves. I was also told that my tumor is camera-shy, his last photo session confirmed his existence but that’s about it.  A MRI will tell a much better story.

The neurosurgeon explained that he thought the best course of action is to remove Timmy.  He explained that he would cut a toonie sized hole in my skull, remove the tumor through the hole, and patch my skull with an acrylic plug.  An acrylic plug you say, is this going to require a trip to Home Depot?  I can’t say that I am looking forward to brain surgery, but a trip to Home Depot might be nice.  I was hoping for a metal plate so I could avoid the metal detector at the airport, and claim to be part robot but I guess an acrylic plug is the best solution if I need to go for another ride in the MRI machine.

So now I wait a little longer for the MRI. In the mean time hopefully my tumor doesn’t get the urge to have a growth spurt. And now of course I am worried that there are metal shards in my eyes that will be magnetically yanked out by the MRI machine.

I slept well last night, that is not the norm.  I have been awake until the wee hours of the morning thinking, worrying and pacing a rut into the floors.  Often my head hurts as I fall asleep and it still hurts when I wake up, not crazy pain, just enough to remind me that there is an invader in my head.  Sort of like an uninvited guest, a wedding crasher except it’s my life, so a life crasher.  Last night my life crasher let me sleep and I feel well today in part because have been sleeping in a pillow fort.  I have been sleeping with an extra pillow just so that my head is a little more elevated in an effort to stop the morning wake-up headaches.  Our bedroom however looks like a pillow fort exploded, I have thin ones, square one, fat ones all stacked up beside my bed in an effort to find the “best” combination. The kids love it, and have formed a slide off our bed with all of the extra pillows.

Today I got up, got dressed, got the kids ready and dropped Sasha at school like normal, and it felt really good.  Then I came home and started to study.  I know you must be thinking that is a little crazy.  But I need a distraction.  I am almost finished the second semester of my graduate studies, I have days left before the semester is over.  I want to attempt to finish the course work so that when I am able I can write the exams and continue on my path.

My doctor has suggested in the form of a doctors note that I defer my exams for 4-6 months.  My university initially had a different plan, they have offered me a medical withdrawal/refund, or a 6 week exam deferral.  After I conferred with my tumor, we decided that neither of those options were going to work.  With just days left of the semester and almost all of my assignments complete I really didn’t want to quit the program, I did all of the work and I am not letting this tumor take even a second of my life away.

I get that there need to be policies in place in institutions like Universities, but come on now.  The courses I am taking are offered every semester so what’s the big deal.  After 2 weeks of daily back and forth with the school I seem to have found the right person to help me.  I really should have started with the disabilities department I would have saved myself some time.  I am very relieved that they can accommodate my situation and I can write the exams when I am ready (as long as it’s within the next 6 months).

Logan’s just arrived with a bag of frozen hash browns, so my motherly duty calls.  Bottom freezers are great unless you have a two-year old that is always hungry.  I have confiscated boxes of waffles, popsicles, ice cream cartons, and now hash browns from his little hands.  He is full of wonder and a source of never-ending humour. I am especially thankful for his innocence and happy distractions these days.

As a mom my health has become secondary.  I took Logan to the doctor’s and the secretary said “I can’t remember if we are seeing both of you, or just Logan today.”  I said well since you asked I do have a question for the doctor, can he see us both?  That is how this whole situation started.  I though that I had a simple little question about a couple of random head pains.  From the Doctor’s initial reaction I could tell that maybe it was a little more serious than I thought, and he ordered a CT scan.

Fast forward 6 weeks, and I find myself back in the same office.  But now I know that I have a brain tumor, and surprisingly my doctor has no clue.  How on earth is that even possible you ask?  Well my CT scan came back while my GP was on vacation, and his locum called me in for a follow-up.  As luck would have it another patient was having a baby during my appointment time and he cancelled my appointment to deliver a baby.  It was sort of a good thing because I would have found out about Timmy the Tumor on Friday March 13th.  Since we all know that bad things happen on Friday the 13th it would have been quite fitting, but it really would have freaked me right out.  It was also the day before Sasha’s 6th birthday party and I would have been a disaster.

My appointment was rescheduled for the next week, and was cancelled again when the locum had the flu (for the entire week).  I get it you see sick people all day, but honestly there is a thing called a flu shot, maybe as a doctor you should get one.

So after two cancelled appointments my GP is back from vacation and has no clue why I am here to see him.  After I inform him that I am here because I have a brain tumor, he panics.  I have a book filled with questions but he can’t seem to get past the diagnosis.  He is clearly in shock.  Maybe it’s because he knows that I have kids, maybe it’s because I have been his patient for 7 years, maybe it’s because he has never had to tell someone that they have a brain tumor.  Or maybe it’s because this is totally freaking serious.  I quickly realize that this situation isn’t good.  I take control of the appointment and get the answers to the questions I have.  I am calmer than the doctor, and I am the one with the brain tumor.

I was hoping that the visit to the doctor would ground me a bit more, that I might find a sense of peace about the situation.  But I left shaking my head.  I am not worried about my care, I will advocate for my best interest.  I feel like I have a couple of the best secret weapons in my back pocket.  When I got the initial diagnosis standing in the emergency department hallway, I didn’t panic.  I planned.  And I asked for help.  I called the person that I knew would be able to give me the straight goods.  My sister-in-law is a fancy type of doctor who has been an incredible resource for us.  If you are reading this Sanja, thank you, thank you, thank you. I don’t even have words to express the gratitude I have.  I think the scariest part of this whole thing is not knowing what’s going to happen next.  It gives me tremendous “piece of mind” to know that there is someone that is super knowledgeable a phone call away.  As I mutter my way though the medical system I am confident that I will get the care I need because I will demand it.

But here is a lesson to all of the parents out there that don’t make time for themselves, who fit in their needs around those of their children, make the time.  You are important too.  Your kids need you to be healthy so you can take care of them.  If you have been putting off a doctor’s appointment because it’s just not convenient, do us both a favour and make that appointment.

This blog post isn’t about making anything, except the best of a bad situation.  I feel like I have been challenged far beyond my means.  I feel like I am tackling a mountain.  The climbing will be tough, but once I reach the peak I hope like hell that the road to recovery will be easy.

Two weeks ago I wasn’t feeling great, I ended up going to emergency.  I have never been to emergency before, and it’s not a very nice place, especially if you are sick.  I was having some pretty specific abdominal pain, and after a call to the nurse line I was convinced that it might be in my best interest to take a trip to the hospital.  Without totally freaking out my husband and kids I suggested that maybe we head over to the hospital, my kids were convinced that we were all going out to dinner.  I want you to picture me in my jammies, hoodie, with a bowl (just in case) leaving the house, I was not at my best.  Either my children aren’t too observant or they are just clueless, but honestly I have never been to a restaurant in my jammies, never.  When we arrive at the hospital the kids are running around in emergency, and I am half asleep waiting my turn in the “red chairs”.  At some point it was decided that I would be better off on my own, and that was in fact the case.  My husband and the kids did in fact go out for dinner.  Only after Logan announced that he wanted to be a Doctor, and hey maybe that will happen.

Skip forward about 4 hours, after being poked, prodded, and drugged I casually asked the ER Doc if he could check on a CT scan that I had at the hospital earlier in the month.  He said sure he would review it, and let me know what it said.  I got dressed in my fancy jammie dinner pants and met him at the computer terminal.  Still on my own, as my husband was waiting for the sitter to arrive so he could come back and claim me.  Standing in the hallway of emergency I heard the words that no one ever wants to hear, EVER.  Words that I hope will haunt me for a long, long time……YOU HAVE A BRAIN TUMOUR.

Excuse me come again, did you give me a hallucinogen?  Because I swear that you just told me that I have a brain tumour.  This is one of those times when he should have said, here sit down, I have some bad news for you.  But no, standing in the hallway of emergency surrounded by medical people, and sick people I heard a bunch of medical terms which equate to “you have a brain tumour”.  The ER Doc sort of explained the situation, at least enough that I had some notion of what was going on. I then shuffled out of emergency alone and sat.

I called my husband and told him that I was done.  He asked what was wrong?  So I told him that I went into the hospital with abdominal pains, and I am leaving with a brain tumour.  What the freaking hell?  I though the worst thing that might happen tonight was getting my appendix out, but right now that sounds like a dream.  The abdominal pains are suspected to have been from a cyst that burst, no biggie.

So here I am waiting in the ultimate test of patience.  The next step is seeing my family Dr, who will start the ball rolling as I will need some more tests, and a neurosurgeon.  My hope is for a benign tumour which is easily operable resulting in no long-term complications.  It might seem like a crazy hope to have, but I really want to wish for the best of a bad situation.