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Archive for October, 2015

Prologue: 

In June of 2015, I was experiencing what I thought might be early signs of dementia.   I had even started a post about my feelings,  but I found myself incapable of clearly expressing my thoughts and concerns.  Here is the beginning of that unfinished effort.  

Title:  Losing my mind
And my balance, my ability to manage this keyboard, my ….. I sit like a pretty wind up doll at the dinner table: even Ben, bless his heart, has started to finish my sentences……..

It grew ever more pathetic.  By mid-August, I was refusing to talk on the phone or engage in any conversation outside the home. 

 Here is the rest of my story.  

We joined the emergency doctor in front of the monitor, and there it was: a slightly blurry image of a large tumour on top of my brain, nestled in at the left hand side.

Only hours before, my family doctor had conducted a few simple tests: Walk across the room. Write the “quick brown fox” on a piece of paper. Talk—and don’t let your husband finish your sentences. He quickly ruled out a stroke or MS. Was it Parkinson’s? Two hours later I had a CAT scan, and now we were looking at this mass of tissue inside my head.

The gentleman in the waiting room with whom we had shared pleasantries to pass the time discreetly left so Ben and I could cry in each other’s arms and pledge that regardless of the outcome, we would get through this. We’ve been married less than a year and have already experienced his triple bypass and then melanoma. At age 70, Ben expects some physical challenges. At 56, I was supposed to be the one taking care of him.

It’s the third marriage for both of us, and we count ourselves incredibly lucky to have found each other so late in life. It was close to midnight when, crying, Ben called my brother with the news. Ben could barely speak, but told my brother he would take on calling my mother the next morning. He is a courageous lad.

Leading up to my emergency room visit, I had been experiencing difficulties with walking, and other seemingly unconnected ailments, including carpal tunnel, a rotator cuff injury, a torn quadriceps muscle and a “drop foot”—all on my right side. I’m an active person but we figured it was due to over-exercising while holidaying in Mexico: we had taken regular hour-long TRX classes (a challenging form of exercise conducted with straps and your own body weight) and spinning classes with a very tough instructor whom we jokingly referred to as our favourite dominatrix.

I went for an X-ray and MRI of my back and lower spine, which showed a hard cyst on my L4 and L5. Back in Canada I started treatment with a chiropractor and a physical therapist. Four to six weeks of therapy was supposed to fix it all.

But I couldn’t floss my teeth, get out of a car, sign my name, or type on my iPhone or computer without hitting the wrong keys. Walking was frustratingly slow and climbing the five sets of stairs in our townhouse was an ordeal. Frankly, I could barely wipe my bum. It was depressing; I was feeling like 56 was the new 90.

I soldiered on with my thrice-weekly therapy sessions, but more disconcerting was my speech problem. I said yes when I meant no, and spoke almost completely in clichés. My vocabulary shrank and finding words became a game of hide ‘n seek. My sentences trailed off, to be finished by Ben or with a lame “and like that. . .” Since I was still reading at the same level and studying Spanish, I still thought maybe the speech issues were the result of a depression caused by my physical state. I didn’t want to admit that there might be something wrong with my cognitive ability.

My friends were concerned too: everyone who had come in contact with me during the past few weeks was struck by the changes in me. Some gently spoke to me, while others shared worried conversations only told to me afterwards.

But it was that visit to our family doctor—one in which I did all of the (sort of) talking, rather than Ben—that triggered my trip to the ER.

My blankie of denial now ripped from my one good hand, I knew something was very wrong with me.

On the drive to the ER, I mulled over my options. “Out of all the things I could possibly have, I pick tumour,” I blurted out to Ben. Then I proceeded to do bad Arnold Schwarzenegger imitations from the “Kindergarten Cop” movie. Be careful what you wish for, I realized.

I spent the night in the ER, but was shocked when about 30 minutes after the drapes were closed around my bed, an orderly arrived to wheel me to the imaging area for my second MRI. The brain surgeon said that I would be waiting one or two days so he could get a more precise image and then arrange a date for surgery.

The next day, after studying the MRI, the surgeon didn’t mince words. “The tumour is very large, perhaps has been growing for four to five years and it has to come out.” It would be one week from diagnosis to surgery, an astonishing timeline for a medical system that is sometimes known to be ponderous and painfully slow.

I tried not to think about the fact that perhaps my condition demanded a warp-speed reaction.

The doctor told us that my tumour, known as a meningioma, is benign in 85% of cases. He said that 20% of women (it affects mostly females) in downtown Toronto are walking around oblivious to this type of growth in their heads. No one really knows why it appears, but radiation might play a role. All those working hours spent with a cell phone glued to my ear, perhaps?

My parents quickly arrived from Sudbury: we had planned a family trip to Spain this year, and we began the dismal process of dismantling it. I continued with the light workouts that I was capable of, determined to go into this thing as strong as I could be. My best friend from high school stayed with us, cooking fabulous meals and keeping us from being miserable and worrying. She also arranged to have her Bible chapel of 300 strong pray for me during my surgery, just as they had for Ben with his heart and melanoma surgery. I was well served in the positive energy department by her church and other prayer circles. I don’t believe, but it was a source of comfort.

Realistically, there was a small chance that I wouldn’t survive the operation.

Ben and I hadn’t completed some basic financial arrangements as husband and wife, so we rushed around two days before the surgery, signing and faxing papers. I went into the surgery calm and reassured that he would be taken care of should something happen. I also had that dreaded conversation with my mother, who still holds my Power of Attorney, that should something catastrophic happen, I didn’t want any heroic recovery efforts. Always wanted to tell her that: now seemed like as good a time as any. (Sometimes clichés are useful shorthand.)

Wednesday morning at around 7am, we arrived at the hospital with kit bag in hand. I was mentally preparing myself to have my long, highlighted blond hair shaved off, which should probably not have been top of mind, but I was resigned to whatever might happen. I went into the operating theatre at 11am, saw the seven people who were responsible for my life for the next three hours, and promptly fell under the anesthetic. I woke up with a start and my first thought was, Oh my! I’m not really resigned at all! I want to live, I’m so grateful, I’m so happy! I spent another two hours in the “step down” area, and then chatting merrily and looking for my library books, I was wheeled out to greet Ben and my parents.

We saw the surgeon about an hour later, who was positively chuffed with his work.   He had been so good with my worried parents: while they were waiting for me to go in, he had come out and spoken briefly with a volunteer on the neuroscience ward. She was a retired nurse, and at his behest, she spoke to my parents, telling them that my surgeon had done the same operation on her five years ago, and she was just fine. It was a kindness I know they and I won’t forget.

We received the good news that the surgeon was able to remove 100% of the tumour. It was about the size of his fist and likely had been growing for about 10 years.

Ben jokingly suggested that I could get an annulment, since I was clearly not in my right mind when we were married last year.

Right there on the gurney, I moved my leg, my arm, and my wrist and pronounced myself cured. Ben wondered how I could be so sure, given that I wasn’t standing upright, but I just knew.

My ability to speak coherently returned. It was as if a switch had been flipped and I was back on. Two days later I was home. It was the best possible result.

Except it wasn’t. A week later I was out walking (lots of walks, lots of naps, only one week of anti-inflammatory drugs) when the surgeon called to say that my tumour was not a Stage I (completely benign) as was the hope, nor was it a Stage III (aggressive). It was judged “atypical,” somewhere between the two. He referred me to Princess Margaret, Canada’s preeminent cancer hospital in Toronto for follow-up, and likely radiation.

I must be the most fortunate of people, because the coordinator at Princess Margaret called on the Tuesday (we got the first upsetting call on the Friday of a long weekend) and said that they had an appointment with the leading oncology radiologist first thing the next day. We had already spent a productive and reassuring hour with the clever daughter of good friends who is involved in cancer trials for a pharmaceutical company at Princess Margaret. The specialist we were referred to was exactly the one she would have recommended.

We went the Pencer Brain Cancer Centre at Princess Margaret very early and began the now familiar process of waiting. We had rushed to Trillium in Mississauga the day before to get a disk with my scans and MRI, so we had to wait until they had loaded it into their system and the radiologist had time to look at it and consider the best course of treatment. In the interim, a very personable young doctor took me through some physical tests that also served to assess my mental ability. Coincidently, she was Scottish, and grew up not 10 miles from my husband, near Edinburgh. It gave us a pleasant distraction while we waited for the verdict: how much radiation, how long, what were the side effects, and the whole frightening process.

Best possible result number two. The radiologist decided not to radiate, just monitor. There is a 50/50 chance that it will grow back, but regular MRIs will monitor its growth, if any.

He also told me that my latest CAT scan showed that my brain, just like memory foam, has bounced back to 80% of its former state.

IMG_0299

Frankenstein’s Bride

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OMG look at those wrinkles

I sent out emails of my good news to the few people we had told about the Stage II diagnosis, and called my relieved family and close friends. I had sent out one long chatty email after I was home, just after the  My “Zipper” Head surgery, with lots of surgery details and a photo of my “zipper” head, complete with a “J” shaped line of metal staples, about 14 inches long. I was surprised to hear back that I have a very nicely shaped head: I need not have worried about losing all my hair. I bought a wig the next week, a golden brown Miley Cyrus model. The elegant lady who sold it to me said that she hesitates to tell prospective buyers about the name since it tends to reduce sales. After being told that I can pass for a Goth or “steam-punk” character with my head staples, not to mention the small matter of dealing with brain surgery, I think I can handle any “twerking” jokes.

There are some post-surgery effects. I have “Pop Rocks” or Alka Seltzer-like feelings in my head that are the result of air escaping, (cue the airhead jokes). I’ve also found I have a heightened sense of smell. I perceive the fragrance of roses more acutely. Unfortunately, that also extends to the neighbours’ pungent garbage bins set out for pick up.

My hearing is also more sensitive than before. The noises of trucks rumbling by and a too-loud TV are truly painful. Ironically, I seem to have a duller sense of taste: I need more spice, more salt, more flavour. As Ben hopefully observed, it’s a good time to clear out all the condiments in my fridge and cupboard. Maybe that, and the fact that I can now hold and use a knife without fear of slicing myself open, has led to my rediscovered passion for cooking.

The Miley Cyrus Model circa 1958

The Miley Cyrus Model circa 1958

However, there is much to fear when I venture outside my home. Until this wound is completely healed, I carefully step aside for large dogs and small children running in the park. As a passenger, I’m nervous in a car, fearing that we’ll be hit from behind. I spend most trips gripping the car door handle with my eyes closed. I won’t even get on our sailboat in case I smack my head open on the companionway (happens regularly) or get hit by the boom (happens more than you think!).

So, at the moment, my world is very small. But it is not shrinking and it’s definitely not sad.

I know that I am incredibly fortunate. I had a swift resolution and a positive outcome to a life-changing condition. I had the expertise and sublime kindnesses of medical staff, and more than anything, an outpouring of support from my husband, family and friends.  Being loved so well is a big responsibility and I’ll try to be worthy.

I also now know that there are times when speaking for yourself (even when it’s compromised) is the most important thing you can do in life.

Postscript:  October 5, 2015

I am going for my post operative consultation with the surgeon tomorrow afternoon, and am fully expecting that I will get the all-clear to start exercising and driving.  If any of you or someone you love gets a similar diagnosis, I would be happy to share all of my research into “what to expect” through the process, pre and post operation.  More people have had this condition than you might think. 

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