The best present of all.

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April 30, 2014 - Calgary, Montana

The wrapping was bandages.... the scotch tape metal staples and sutures, and inside.....THE BEST BIRTHDAY PRESENT EVER. Thank you for allowing me to share my journey with you. Many faces of Brain Tumors... What does the face of a brain tumor survivor look like? I am a survivor..... To give you a bit of a backround on myself: Pretty healthy, 50 year old woman, raised two healthy, happy young adults, enjoyed life on the farm ranch and cottage life for many years, enjoyed my work selling real estate and most recently in aviation. Other than "outbursts" such as having my appendix, gallballer and thyroid removed, a breast lumpectomy, a hysterectomy and a broken neck I have been a very healthy, happy individual. I love the outdoors, golfing, fly fishing, hiking, dogs and life in general.

 

I was diagnosed with a Meningioma (benign brain tumor that grows in the Meninges) in Feb 2013, and underwent a bifrontal craniotomy and total resection of the tumor June 7, 2013 at Foothills Hospital. Throughout 2012 I had been seeing a ENT (Ear, Nose, Throat Specialist) for what appeared to be post nasal drip. He offered up many treatments to no resolve. In November 2012 I developed pink eye in both my eyes. My right ear would often ache much like it would with a cold/flu. Soon my right ear began to feel "plugged", and my hearing in that ear was reduced. My G.P's diagnosis was this was "fluid" in my ear and I was advised to take Advil Cold and Sinus for a few weeks. My right eye was also really bothering me, it felt "buggy", and swollen, almost as though it had been out in the wind and dirt all day, and with any pressure could "pop right out". Within a week or two of these symptoms developing the right side of my face began to have numbness and a tingling sensation. I returned to my ENT after no success with my G.P`s suggestions, he promised me there was NO fluid in my ear, and given my symptoms suggested an MRI to rule out MS. The wait for an MRI would be a few months, and I knew in my heart there was something wrong. I went ahead, booked and paid for a private MRI, and got the results the next day... Feb 5, 2013. Getting my MRI results was not the most positive part of the whole experience. I was lead to the little room in the back.. behind the kitchen... the one with the little comfy couch and the Kleenex box in my GP's office . I have been going to this same clinic for years and never knew this room existed. I won't forget the feel and look of it. I waited and waited for the Dr., after an hour I asked if I had been forgotten, I was told the Dr. wanted another Dr. to assist with the appointment, ..my heart sank. Waited another 15 minutes.

 

The Dr.'s explained that I had a Meningioma. The Dr. put a request in to Urgent Neurology and said they would contact me that afternoon. That call did not come. In a few weeks I was given an appointment to see Dr. John Kelly, a neuro surgeon, on Feb 25, 2013. Quite strange the way I reacted, I rushed back to work.... sat and stared blankly into space for a while, paced a while...left early... stopped at Safeway... cause.... I needed something???? I recall very clearly standing in the line up looking around at all the people coming and going.. thinking.. "okay.. who here has a brain tumor"?.. raise your hand... Do you? No hey? You? Pretty rare.... I suppose I was having a little bit of "why me" going on...now everytime I turn down that road I remind myself of the "attitude of gratitude", and count my blessings. Dr. Kelly and I decided during this first appointment in Feb to take a conservative approach as a treatment with a follow up MRI in a few months., this is referred to "wait and watch " this is often the initial treatment with benign tumors, basically monitoring the tumor for changes. The private MRI was done on Feb 5, and the MRI scheduled by my Dr. was March 20th. This timing allowed us to compare the two MRI's to see if the tumor and edema, ( fluid ) had changed in 6 weeks. I saw Dr. Kelly again April 8 th, 2013. Dr. Kelly felt that the tumor showed subtle differences and a suggestion of interval growth. At this point we had to decide to continue to "wait and watch" or to go ahead with the surgery to remove the tumor. After considerable thought and research I decided that the tumor had to come out. Dr. Kelly felt certain that I would have to have surgery to re sect this tumor at some point in my life so may as well go ahead while I was younger and in good health. On June 7, ( the day before my 51st birthday ) I underwent a 6 hour surgery at the Foothills in the capable hands of Dr. John Kelly. The procedure performed was a bi-frontal craniotomy for resection of left olfactory groove meningioma. The tumor was behind my left eye. I had an incision "ear to ear" over the top of my head the wound was closed with 50 metal staples and sutures. Dr. Kelly placed several plates and many screws in my forehead and surrounding area's to reconstruct my skull. I was awake and talking the evening of my surgery, and was up and about the next day. Ice-packs were my best buddy. The Dr.s felt I was well enough to go home on day 3.. and away I went! I took pain relief and steroids for a week or so, and since have not been on any prescription medications At the end of June I visited Dr. Kelly to have my staples removed. That was a memorable day. Having the staples out felt fantastic! Then the scale tipped.... the pathology results were in, and the tumor was graded on the World Health Organization scale as a grade II. Grade II – A-typical meningioma: Approximately 15-20% of meningiomas are atypical, meaning that the tumor cells do not appear typical or normal. Atypical meningiomas are neither malignant (cancerous) nor benign, but may become malignant. Grade II atypical meningiomas also tend to recur and grow faster. The surgery revealed that the tumor had invaded my brain in two locations, was forcing it's way through my skull and had decayed one of my olfactory nerves, (which allow you to smell). August 31st ( aprox. 2.5 months after my surgery )I had a post op MRI to see if the tumor was showing any signs of regrowth. This was negative and very good news to us. I will tell you,.. never In my wildest dreams would I have believed I would have been diagnosed with a brain tumor. Certainly the words are very scary words to hear. Telling my family and friends was the toughest part, I knew they would worry, and quite honestly I avoided contact other than by email. I am a very emotional person each and every phone call would end up in tears. Then my head would pound! I was fortunate to not have tumor related headaches, and didn't exactly relish a headache from these emotional interactions. I have learned to lean on others, let them share the burden, let them help. It makes people feel worthy, wanted, and helpful. I found that some of my family, friends were amazing support, others appeared to be in denial... everyone handles such news differently for sure. My advise to anyone with a brain tumor is,... do your research, there are many amazing websites available with tons of information. I have joined a couple online support groups. Meningioma Mamma`s and Pappa's is amazing. They also has a division on facebook.. You can share stories, experiences with others that have been through a similar experience and it's most helpful. There are also many books available at amazon.ca etc. with amazing and helpful information for most types of tumors. I would strongly suggest that you also donate the tumor to research regardless of the pathology. ( benign, or malignant ).The research continues, and donating is one way for those of us that have benefited from this research can give, we can give in ways that money can not. I will have a follow up MRI in 2 months, and will continue to be monitored for the rest of my life, the time between scans will lengthen if the tumor does not recur. Each patient has to be comfortable with the decision to "watch and wait" or to have surgery to remove the tumor. While MRI`s are amazing technology and provide incredible information they can't and don't reveal everything. We were not aware that the tumor I had was invading my brain and skull. Certainly glad we made the decision to not watch the tumor any longer. I can not smell anything, and my taste is very limited, but considering the complex surgery I underwent I am most grateful that those are my only real side effects. I still tire quite easily, but manage to carry on with my life. We don't know if the symptoms that lead to my diagnosis are related to the tumor or not, I do know that my ear no longer feels "plugged", my face is no longer numb and tingling, however my right eye still feels "different". My life has changed in that I appreciate every day. I appreciate my family, my friends, the sun.. the stars.. the leaves... the grass... the... the.. you get the idea. Dr. Kelly and his team gave me the best Birthday present ever. They gave me my life back. There is no way to thank them enough. On behalf of my family, friends, and myself thank you to Dr. Kelly, his team, staff of the Foothills Hospital, Researchers, Donors, Brain Tumor Foundation. If there is anyway I may be of assistance to any of you going through a similar experience please do not hesitate to contact The Brain Tumor Foundation for my email address or chase me down. Thank you for your time and attention this afternoon.