meningioma

Reading the Signs

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"Give it to me straight, Doc - Is there gonna be more paperwork?!"
“Give it to me straight, Doc – Is there gonna be more paperwork?!”

Last Friday I spend the morning at the hospital. It wasn’t much fun. As with any sort of visit to a health care center there was a form to fill in. Once again it was filled with very random questions which did not pertain to my issue or lifestyle. I felt as though I aged considerably as I answered questions about dementia, incontinence, and the dependence on others to get dressed/bathed.  One of the few questions I did answer yes to was “are you responsible for the case of another person”, yes two other people. One that I need to dress/bathe and at 2 years old he occasionally wets the bed. The other 2 questions that I answered yes to were “have you been anxious in the last 2 weeks” and “are you having trouble sleeping”, obviously I am having my skull cut open in a week.

The first person I met with was the pharmacist. My list of current drugs includes over the counter headache medication, and the occasional Tums. The visit lasted about 5 minutes yet I was scheduled in for an hour. So we waited 45 minutes for the next appointment. When it was finally my turn to see the anesthesiologist he said “this is a big procedure”. Yes thanks for the news flash. All I wanted to know was how soon could he knock me out. I don’t want to feel anything, I don’t want to see anything. If he could come to my house the night before that would be great. He inspected my neck and throat to make sure that I could be incubated easily, and apparently I pass. He kept saying “you should be ok”, how comforting.

Next up was the nurse and she was great. She reminded me of my Nana who was also a RN. She was clearly in charge of the appointment and could answer all of my questions. There were 2 things that have stuck with me that seem very important the first being that I am not allowed to get out of bed for the first two days without assistance, and second is that I shouldn’t pickup the kids or do housework for 4 weeks. The warning to not do housework was the only silver lining for the time I spent at the hospital that day. The rest of it SUCKED.

After playing 50 questions with three people I went for an ECG. It was fast and painless. Next was blood-work, easy peasy. My final stop was a chest x-ray and after a very long wait (due to a scared child ahead of me) I was done. I have come to learn that emotional exhaustion is a real thing. A number of times throughout this process I have found myself so tired I can hardly function. It’s not due to a lack of sleep or physical exertion it’s because I have had a particularity emotional day and I am tired as a result.

monk textingOn the way to pickup our 2 year old I was thinking about the surgery and I had tears in my eyes. We pulled into the parking lot (he was out for lunch with friends) and I saw a monk. He was dressed in brown robes with a big beaded cross leaning on the car beside us texting. It was one of those surreal situations that made me do a double take. I am taking it as a sign that everything will be ok.

Throughout this process one of the hardest things to deal with is that I need to surrender and trust other people. I can’t be in control, I can only advocate for myself. I have always believed that everything happens for a reason and that the goal is to learn throughout the process. In a week I am going to put my life in the hands of others and have faith because that’s all that I can do.

Bumping Along…..It’s nearing the end of July and I still have a brain tumour

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Brain surgeryIt’s been a while since I wrote specifically about Timmy. He seems to make his way into almost every one of my posts recently and that’s because it’s pretty hard to separate myself from him. As it’s almost the end of July and he and I are still stuck together you might have been wondering what’s up. Or most likely you are having a great summer and not thinking at all about me or my brain tumour, and if that’s the case, fantastic, good for you, I am jealous.

Timmy and I were originally scheduled to be separated on July 31 the Friday before the August long weekend. The neurosurgeon, my husband, and my parents were all on board with the plan (Timmy doesn’t get a vote) but unfortunately the hospital wasn’t very keen. About a week ago I got a call to say that I was being bumped to Friday August 7th because there was an urgent case that needed my date. I find it a little hard to believe that someone more urgent than me was still going to wait 2+ weeks for surgery. I think it was code for it’s the Friday before the long weekend and there isn’t the staff for your elective surgery. If the latter is the case than I am happy to move to a date that can accommodate the operating room staff, I wouldn’t want anyone rushing to get out of MY surgery to get to the cabin on the lake with a two four.

Couple of notes here:

  • in BC cottages are called cabins
  • beer is not commonly sold in two fours in BC, so it would be more like 4 six packs

RubesEarwormAt first I was a little upset by the change in date but that lasted for about 10 minutes, and then I was relieved. My parents were able to switch their flights by a week and were assisted by a lovely customer service person at Westjest that waived the flight change fee after my mom explained why they needed to change flights. Props to Westjet for being human. My surgery was planned for the end of July so that I could write exams, and still be able to go back to school in September. I will now have 4 weeks of recovery time and hopefully that will be enough. The surgeon said that I should be back to my regular routine in 6 weeks, so I am hoping that I am an extra fast healer. All that I have to compare this surgery to is giving birth and the removal of wisdom teeth, both of which took me way too long to get over.

Things are moving forward though I am spending the morning today at the hospital meeting with a pharmacist (my new BFF), an anesthesiologist (makes me think of LL Cool J and the song “momma gonna knock you out”), and a nurse (who will also be in the running for the position of new BFF). I am also having bloodwork, an ECG, and a chest x-ray. Sounds like a super fun way to spend a Friday morning, but I am going to do it without the kids and with my husband so it’s sort of like a date.

As of right now Timmy will be evicted on August 7th but you better believe that I will keep you posted if something changes.

Exams with a Toddler and a Brain Tumour

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Study BuddyI have been busy studying for exams the past couple of weeks. Unfortunately because I had taken a 3 month hiatus from school after learning that I had a brain tumour I had to re-learn most of the content before I could write exams. I figured that it would be in my best interest to write the exams before surgery because who knows what state I might be in post surgery.

To progress in my program (Masters of Business Administration) I need a B in each course to move into the September semester which is a tad daunting without Timmy (my tumour) inhabiting my brain space. I also have dreams of winning a scholarship/award to help pay my ridiculous tuition, so the grades are rather important. When I decided to go back to school full time last year I did a little number crunching and determined that I would rather spend the $24,000 over 2.5 years on grad school tuition, rather than daycare. YES the cost of day care and university tuition for a MBA are roughly equal. The return on investment of grad school versus daycare is a no brainer but it meant that I had a two year old home with me almost everyday while I attempted to learn subjects which were foreign to me.

I have very creative background with a Bachelor of Design, a diploma in furniture design and photography. Over the course of my career I became more interested in the business aspects of the furniture industry and that is how I ended up pursuing a MBA. Most of the students studying in the MBA program come from with a background in business, finance or engineering (at least some prior education requiring the use of a calculator). With Economics, Statistics, and two Accounting courses on the agenda I knew that the math was going to be a bit challenging for me, and then Timmy showed up. Whoa is me. Thankfully my husband (who is an Aerospace Engineer) tutored me through Economics (we got an A) but for the rest I was on my own. I am not sure how I did in Statistics yesterday but the exam was brutal, my fingers are crossed for a pass.

Regardless I feel pretty good about completing the first year of grad school with a two year old at home and a brain tumour. I learned a lot about business and even more about myself both were worth the price of tuition. On a super positive note right after I got back from writing my last exam I received an email stating that I had in fact been selected to receive a $3,500 MBA Entrance Award, now all I need to do is pass that Stats course.

Losing my mind

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IMG_20150710_211153Technically I am having a piece of my skull removed and a brain invader chopped out but emotionally I am losing my mind. Three weeks today and I will be happily drugged in ICU with a hole the size of a toonie in my head, and a metal plate keeping my brain in. I can feel the panic attack brewing just thinking about it.

I threw a tantrum today, just like a toddler. Not one of my proudest moments that’s for sure. I was attempting to study for exams which is an overly ambitious goal on the best of days with two little loud boys at home. It’s been months since the end of the semester and here I am in the middle of July trying to get my course work complete before Timmy is removed. I am having a bit of a hard time remembering the course content all of these months later. It’s really hot in my office (we are having an unseasonably warm summer and no air conditioning). I have chosen to keep the window in the office closed because my husband is smoking a cigar right below it. It’s a sauna in the office on the best of days but the end of the day is unbearable with full sun all afternoon. I have been packing up and moving to the coffee shop in the evenings but this course requires so much stuff I need a suitcase to get there. The kids are fighting, screaming and crying (all very normal behaviour for them) and surprise surprise I have a headache.

I yelled, stomped and packed up my crap. If I had a little more disposable income I would have checked into a hotel for the weekend because I don’t think that I have ever felt more like running away. But the coffee shop is going to have to cut it. When I got settled into my regular spot I noticed that someone had put some flowers in the corner which was a really nice surprise. Sometime’s it’s the little things that matter.

There have been so many people that have mentioned how well I am handling the Timmy situation, and most of the time I am handling the situation as well as I can. But today my anger got the best of me. Some days life can get messy, thankfully there is tomorrow because I need a do over for today.

What’s up doc?

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I had no idea how often people asked “what are your plans for the summer”? Are you travelling anywhere? It’s getting to be like the new “How are you?” or at least it seems that way when I have been living in limbo.

'Given the complexity of the task and the size of the tumor, your best bet is Photoshop.'

I went for a follow-up appointment this past week to get the results from my MRI, which I already knew because I am as impatient as a toddler. But it’s a little different hearing them from a neurosurgeon than from my family doctor. The neurosurgeon still believes that I have a benign meningioma which is a tumour growing between my skull and the lining of my brain called the meninges. Whether or not it’s benign won’t be confirmed until the tumour is removed. Timmy is larger than initially suspected. My first scan had him at 2.3cm and the second more accurate one has him measuring 2.9cm. A six milimeter difference isn’t much unless you are talking about brain tumours. Meningioma’s typically grow at a rate of 1mm per year, so we are potentially talking about a difference of 6 years of growth. The surgeon doesn’t actually think that Timmy has grown 6mm between scans he just thinks that the image from the MRI is much better than the one from the CT scan. As I learned this week 3cm is the decision point for these types of tumours in this location. My options were presented such that:

1. I can wait until the tumour gets to be 3cm in 6 months to a year during which time I would need to have another MRI and more appointments, and then have surgery

2. have radiation to reduce the size of the tumour and then at some time in the future have surgery

3. get it removed sooner rather than later

Unfortunately using photoshop to remove the tumour wasn’t an option. Waiting a couple more months would be fine except having a brain tumour sort of sucks. If I was 70 years old my best course of treatment would be radiation. But I am not 70 so shrinking it and hoping for the best only to have to revisit the situation later isn’t very appealing. So looks like I am going to have surgery sooner rather than later.

He then went through the potential risks of this surgery based on the size and location of Timmy which include a small risk of facial paralysis on the left side of my face, reduced motor function in my left hand, bleeding requiring a blood transfusion, and somethings about difficulty swallowing, swelling, leaking spinal fluid; honestly I sort of lost track. I do remember that if he can’t untangle the tumour from important things he will just leave some tumour behind rather than risk permanent damage. If he does have to chop up Timmy what is left will be “fried” as he put it, and I believe there was a mention of potential radiation treatment later on. My husband made notes which I can’t bear to read. Having too many details scares the crap out of me.

What is sort of neat, creepy and scary all at the same time is that he will be injecting little sensors into my face once my head is clamped to the operating table. Yes that is correct my head will be clamped to the operating table. Sounds pleasant doesn’t it. He will try and get the clamp marks close to my hair line just in case there is any scaring, but he couldn’t be sure where they would end up until he had me on the table. Considering that I will have my skull drilled open, the clamp marks will probably be the least of my concerns. The sensors will be used to align the MRI imaging to my head sort of like a GPS of my brain. The sensors will also act like little alarms for the nerves in my face if there is any twitching.

I will be sedated for the operation which is actually nice to hear because there are types of brain surgery that require local anesthetic so you are pretty much awake for the surgery. That sounds like torture. I have a hard time being fully present for a dental filling I can’t even image the post traumatic stress disorder that might surface from being awake for brain surgery.

The good news (I am stretching it here, but there has to be something positive in the situation) is that I will in fact be part robot when this is all over with as I will be getting a titanium plate in my head. My kids think that the surgeon is going to cut off my head, insert bolts and I will turn into Frankenstein. Thankfully he is not going to cut off my head. He is only going to cut into my head and there will be bolts involved so they are only partially wrong. I will defiantly be green right after the surgery because nausea is high on the list of side effects.

icu1I will be in the ICU right after the surgery but I might not even be aware because this event calls for a bucketful of drugs. There is a risk of swelling and bleeding post surgery given the tumour location so the ICU is the place to be. If all goes according to plan I will be out of the hospital within 5 days.

My husband, the surgeon and I tossed around some potential surgery dates as if we were making dinner plans. I have a tentative craniotomy (I think that’s what it’s called) booked but I am waiting for the confirmation before I get too excited, or freaked right out. In the mean time I need to have a pre-op exam, blood work and chest X-ray.

So now when I am asked “do you have any big plans for the summer”, I can say I sure do I’m having brain surgery. Now doesn’t that sound like a fun way to spend the summer.

How are you? No really how are you?

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how_you_doin_____joey_tribbiani_by_iamthewalrus46-d3rbpuqSince I have been diagnosed with a brain tumour and people know about it, I have been asked How are you doing? When I give the standard, fine or OK. I get a followup but how are you really doing, sometimes with an accompanied point at my head, or how’s Timmy the tumour doing. Well here’s the low down.

I have an appointment with my neurosurgeon tomorrow. This is the followup from the MRI I had in April. I am a little nervous that he is going to tell me that we should just wait and watch the growth, and at the same time I would be relieved. I feel like my life is being held captive by Timmy because I am having a hard time committing to anything long-term. Do I go back to school in September? Or on vacation out of the country? Both of these questions I can’t really answer right now. It’s hard to plan for the coming months when I don’t know Timmy’s plan. I would love the surgeon to say lets take down Timmy mid summer so you can recover sooner rather than later.

I get dizzy often, sometimes it feels like I am wearing a hat that is too tight and I having varying degrees of headaches. So for these reasons I would like Timmy to take a hike pronto. At the same time the idea of having brain surgery is SCARY. For the record I have never had surgery and have only been hospitalized for the rather uncomplicated births of my two kiddo’s. I have never even had a broken bone. I am scar free. Yet it doesn’t surprise me for a second that my first surgery would be on my brain because I am a “go big or go home” type of person. If you are going to have surgery you might as well go for it.

reality-679x350Those stages of grief or loss that you hear about are also very applicable to my current situation. I was in denial from the first headache until the CT Scan showed the tumour. Now that I have had 2 scans that both show Timmy, a couple of dizzy spells, and a headache or two it’s hard to deny Timmy’s existence. Depression was very real in the first couple of days/weeks but that has passed now. As of right now there has been no bargaining, but the days before I have surgery you better believe I will be promising anything to live and to live as I have been just without Timmy. The anger I am experiencing is a very new emotion for me, it’s not like being angry at someone because there isn’t anyone to be angry at. I am just angry. I am angry I can’t do the things I want to do. I am angry that I will be having a lovely day and I get dizzy and am reminded that I have a brain tumour. I am angry when I escape reality for a couple of hours while watching a movie, or sleeping only to be smacked in the face with reality. I am angry my head will be cut open. I am angry that this situation is mine and I have to do something about it.

But I am also thankful, so incredibly thankful that its me and not either of my kids because I think that I would lose my mind if I had to deal with this as a bystander. I am also thankful that while this is serious it is also treatable. I just finished reading “Still Alice” by Lisa Genova about a woman who has Alzheimer’s disease which I found surprisingly uplifting. I am reminded that it could be so much worse. So that’s how I am doing. How are you doing?

Family Photos

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Gallery 3What do brain tumours and photography have in common? Probably not much. But having been recently diagnosed with a brain tumour has prompted me to yet again have family photos taken. When I told my husband that I wanted to have photos taken his response was “really AGAIN”. It has only been a year since the last batch and I understand his point but I played the brain tumour card anyway. You never know what the future may bring, so while I can get some family shots taken I went for it. Scroll to the bottom to see the lovely pictures that Nicola at Lily and Lane took for us.

We don’t have a lot of family pictures of all of us, there are a pile of the kids, and lots of my husband with the kids. I am almost always behind the camera so just in case something goes wrong and Timmy the tumour wins (which is highly unlikely in my opinion) my family will have some new shiny pictures of me. Until that dark day (holy morbid) inevitably happens sometime in my late 90’s I plan on enjoying the photos. Which means that they need to make their way out of the computer.

Step 1 is getting the photos, Step 2 is getting them out of the computer and into some form that you can enjoy. Hint, hint nudge nudge. I stumbled across this fantastic INEXPENSIVE, EASY, AND QUICK way to display photos. In the image above there is a mix of pictures taken by three different photographers (myself included). In the top row the 3rd and 6th images from the left, and first and fifth images in the bottom row I mounted on wood artist panels. It’s really rare that I come across any DIY project that is all three, so I am pretty excited to share this one with you. This project cost $2.00 for the wood artist board at the dollar store, $3.00 for the 8×10 print, $1.00 craft paint to paint the edges from the dollar store.  I already had a jar of modge podge and a paint brush, but neither of those items will break the bank.

What you need:

Supplies

  • 8×10 photo
  • modge podge
  • Canvas or wood artist board
  • A paint brush/foam brush
  • craft paint to paint the edges
  • Exacto knife

Instructions:

Step 1 – paint the edges of the canvas or wood board and wait for it to dry. Have a glass of wine while you wait.

Step 1 and 2

Step 2 – Apply a second coat of paint if needed and wait for it to dry

Step 3 – Apply a coat of modge podge to the canvas/board and lineup the photo making sure to remove any air bubbles, wait for it to stick

Step 4 – Trim around the edges of the canvas/board

Step 4

Step 5 – Apply a coat of modge podge as evenly as possible over the entire photo to seal it. A foam brush is better than a bristle brush.

Step 5

Photo Gallery

Taco Salad

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Taco saladHere’s a little secret. My husband is a much better cook than I will ever be. But as my family will attest to I rock a mean salad. Since I was diagnosed with a brain tumour I have been sitting back eating junk. I had previous to the diagnosis been running for exercise because it’s free, we have a treadmill and it’s a great excuse to buy new shoes. Exercise was also the reason why I had the intense head pains that caused me to go to the doctor and led me to the brain tumour diagnosis. So running is off the table for now. Which means that healthy eating is on.

I always thought that those fancy taco salad bowls in restaurants would be hard to duplicate. I am happy to say that I was so wrong about that. Last night I made a couple taco salad bowls and here are the instructions:

Ingredients:

  • 8″ flour tortilla shells (from a package)
  • onion powder, garlic powder, paprika, and chili powder
  • Olive oil
  • cooking spray

Instructions:

  1. Lay the tortilla shell on a flat surface, lightly brush with olive oil
  2. Lightly dust with spices
  3. Spray non stick cooking spray inside an oven safe bowl
  4. Put the tortilla shell into the bowl, pressing down in the middle
  5. Heat in the oven until crispy (350 degrees for 10 minutes in my oven)

Salad:

  • Romaine lettuce
  • Tomato
  • Yellow pepper
  • black beans
  • Chicken
  • Avocado
  • Green onion
  • Shredded cheese
  • Dressing (oil and balsamic vinegar)

Support

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25983b5255f2edc7500b84b5d9a9e2f0How are you? This little question has turned into more of a greeting than an actual question. When you answer it do you tell the truth? Or do you say fine, thanks. How are you?

I feel like I am lying if you ask how I am and I say fine, because in no way am I fine. So I have started saying I am great except for the brain tumor. I have gotten some interesting reactions to say the least. I do however have great hope that I will one day be able to say fine again and really mean it.

I have been telling people that I have a brain tumor, some out of necessity, some because I want to, and others because I don’t want to pretend that everything is OK. I have been openly sharing my story. It’s hard because it’s emotionally exhausting but it’s worth it. I don’t even know how many people have told me of friends, relatives, or acquaintances who have survived a brain tumor. I have lost count. Your stories inspire me and fill me with hope, thank you, thank you, thank you.

Tomorrow we will be walking in the Brain Tumour Spring Sprint. I have raised money and participated in many walks for all kinds of causes but never one that affected me personally. I wanted to thank everyone for your donations, it’s humbling to know that I have so many people’s support. I have raised just over $1,000.00. Yahoo. If you would like to donate to this cause very close to my heart (brain) please do. Here is the link. http://www.springsprint.ca/site/TR/SpringSprint/General?px=1028237&pg=personal&fr_id=1217#.VWEjiU_BwXA

Walk shirtI decided to turn the image of a brain formed by hands into a shirt because I thought that it would make a perfect shirt for the kids for the walk. Every occasion around our house get some sort of t-shirt, this is no exception. I anticipate that they will be covered in food and or dirt and I may need to make another set before the walk tomorrow.

Goodbye Mommy Guilt

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valentinesWhen I first found out that I had a brain tumour you could say that I was depressed, for the first two days after I didn`t get dressed and I didn`t spend much time out of bed. That might have been the brain tumour but it also might have been the burst ovarian cyst, and stomach flu which were also attacking my body at the same time. Regardless my kids saw me as a bit of a mess, because honestly I was.

On day three I got up, got dressed and headed to a birthday party (at least physically) and felt some semblance or normalcy for the first time in days. I was also pretty proud of myself that I didn`t break down and cry mid party at the thought that I might not be around for my kids subsequent birthday parties because those were the thoughts swirling in my mind at the time.

Later that same day I had a massage booked. The appointment was made weeks before and I thought that it might make me feel better to get a massage. I had sent my CT results to my massage therapist the day before mainly so that I wouldn`t actually have to discuss my recently discovered tumour, and also so that I wouldn`t waste precious massage time crying. When I arrived we chatted a little about how I was feeling, and then he treated me as he had every other time I had been for a massage in the last 5 years. He also told me about his mother in law who had a meningioma removed (same kind of tumour as mine) and she has a loss of hearing in one ear, and can`t swim underwater without special ear plugs. To him this situation was no big deal, but not in a way that I felt like he was diminishing my situation. Simply that it is an unfortunate event which requires surgery,healing and time. My massage therapist relieved more stress than I ever thought possible with only his attitude and his words. I left his office feeling better than I had in a while because I had hope, piles and piles of hope.

nap timeFor the first time in days I ate dinner at the table with the rest of the family. Sasha who had just turned 6, turned to me and really looked at me and said “you seem to be feeling better mommy”. And he was right, I was feeling much better. But that point was also a pivotal moment because I became acutely aware of just how much he was picking up on. I vowed at that moment to pull myself together, and have hope that this situation would be resolved in time.

Sasha’s keen observation, and my acknowledgement of the brain tumour have also given me perspective. My mommy guilt has disappeared. I have a hard time caring these days about sugar cereal intake, TV watching, and what kind of diapers are the best. Instead I am taking care of myself, giving the kids extra snuggles, and making sure that the big things like their emotional needs are being met. My new perspective courtesy of my brain tumour is to live, and raise happy healthy kids.

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