Autumn & Other Updates

First day of Senior Kindergarten for my Granddaughter.

First day of College for my daughter.

Ok so most of Autumn kind of escaped me. September and October flew past me and here I am in brand new November expecting the harsh cold reality of an up and coming winter. Oddly enough we are starting off November with freakishly warm weather here in London, Ontario. It has been a balmy 16-21 degrees celcius this week and expected to get back to seasonal temperatures this weekend. The snow has been hitting this week in the East and West so it is coming for us soon, I just know it!

Strolling the new neighborhood I cam across this little gem. A free book exchange!

Flowers are still blooming!

The best kind of turkey! Loaded with iron!

Not yet boot weather!

Fall colors!

This year I am prepared for what winter brings. I went out and bought a new coat, gloves and boots, something that gave me great anxiety as I bought all brand new. If you know me well, you know that I am an avid eco friendly thrift shopper and have a hard time justifying to myself buying new stuff. Usually, I shop the thrift shops every Fall looking for a new coat and decent boots and every year for the last 5 years, I have walked away empty handed and made my old ones last another year. This year, I threw the old ones out during my great purge and downsizing when I moved to the apartment and so I had no choice but to purchase new ones. I avoided the thrift shops and instead shopped the fliers with my new Reebee app on my phone and I actually found a coat and boots I liked...brand new. Both items had great price tags attached and finding myself down almost 2 sizes this Fall, I purchased new! I justified my purchases with the knowledge that I need something warm, comfortable and ready for the several walks I take daily with my dogs who no longer have a back yard to go out in. Now I wait for the storms to start to test out my new gear. Chances are I will be fed up and ready for my flip flops again by January.

Giving Thanks for family this past Thanksgiving!

October was Brain Tumour awareness Month. I had posted on social media that I was going to write an update about living with my own tumour and how it has affected my life thus far. Everytime I sat down to write, I found I had difficulty coming up with words to describe my thoughts on it all. Sometimes, I just want to ignore it all and pretend like it is not a part of my life at all, sometimes I don't want to talk about it because I feel like I am complaining and no one wants to hear a whiner especially one who is much better off than many others. Sometimes I want to rant the hell out of it! I am one year and 7 months since the discovery of my brain stem tumour and 5 months since they have determined with great assurance that it is absolutley not malignant and that they feel it is a white epidermoid wrapped around 8 of my cranial nerves and vertebral artery in my brain stem area.

It seems small to me measuring at about 2.5 centimeters or almost an inch in length. I am told however that given its location, this is a good sized tumour. My Neurosurgeon told me to imagine the size of my pinkie finger, that is approximately the size of my brainstem, now wrap it with a one inch tumour and squeeze that into the very tight quarters between the cerebellum and nerves and arteries. Not much room indeed. Our brains are affected by temperature and atmosphere and the fluids can cause swelling as well making an even tighter area and irritating or damaging the nerves that control the various functions of our bodies.

In my case the functions or nerves that are affected are: Trigeminal~ Face and mouth feeling and pain, Abducens~ turns the eyes laterally, Facial~ controls most facial movement, feeling, expression and the secretion of tears and saliva and some taste, Auditory~ hearing and balance, Glossopharyngeal~ taste and pharnyx contraction or ability to swallow, Vagus~ controls the heart, lungs, and viscera (abdominal organs), the Accessory~ neck and shoulder muscles, Hypoglossal~ tongue movements and speech. What this means is on any given day I can experience a variety of symptoms due to the tumour irritating these nerves...or not. Everything from the loss of feeling in my face, to extreme facial and mouth pain. Blurred and ghost vision. Vertigo, balance issues. Dry eyes, slight drooling. The dislike of the taste of food and lack of appetite. Tinnitus, choking on food and drink and saliva. Racing heart, shortness of breath, IBS, nausea, vomiting, absence seizures, pre/syncope, (fainting), headaches, brain fog and extreme fatigue, and difficulties with speech and putting words together and muscle pain, spasms, and stiffness in my neck and shoulders, or tremors and shakes.

The most affected nerves in my brain are the ones controlling my swallowing, speech, heart, breathing, blood pressure, and facial movement.

How it affects me? I have difficulty standing in one place for too long or rising from a sitting to a standing position without almost fainting. I do not have clear vision and it affects my reading, art work, and more. I experience bouts of facial and mouth pain so severe, I just want to bury my head somewhere and lock myself away in a dark room. I have to avoid certain types of food and liquid, have to eat slowly and carefully and still choke on my food and drink. Sometimes my choking is severe enough to make me vomit. I experience bouts where I cannot verbalize words, trip all over my tongue, lose my voice if I speak for more than an hour, can't think of what I want to say and feel so exhausted even with a full night of sleep that I feel I am going to just fall over and fall asleep wherever I am. I have difficulty breathing, shortness of breath when I speak, walk and am prone to asthma like reactions. I have difficulty with background noise and certain tones and find it hard to hear properly on the phone and have difficulty with loud and shrill noise as it physically hurts me. I lose my balance very easily at times and can get bouts of vertigo and so have had to give up amusement park rides, ladders, laying flat, and anything that spins me, or requires precision balance. I have pre/syncope and so I am always worried that I may just faint and when I am out of the house where I don't have access to a place to sit, I usually need something or someone to hold onto. I am unable to drive. Some weeks I can go for long stretches of hating everything I eat, experiencing morning sickness, and multiple bouts of daily diarrhea and gut pain. I have difficulty sleeping for long stretches of time and experience bad muscle pain in my neck and shoulders if I lay or sit for too long. Lately I have started drooling just a little bit out of the right side of my mouth. These are the most bothersome things. I can manage these symptoms by putting things in place as mentioned but it has made me change my lifestyle.

My most recent tests and consults, provided me with this news: Surgery is not really an option until there really is no other choice (tumor becomes life threatening) or the surgical methods for this type of tumor have improved. If surgery was performed now, only part of the tumor could be de-bulked. Total removal is very difficult with these tumors as they have a sticky outer layer that adheres to the brain and nerves. Partial removal likely means the tumor will grow back and many tumors then grow at a faster rate. De-bulking at this time poses a very high risk that I could lose my speech ability and need a permanent feeding tube. There is no indication of how fast or slow the tumor will grow, although this last year indicates there has been little change in mine. Hormonal changes can speed up the growth, and worsen the symptoms (like menopause) and some people are at a risk for ruptured tumors due to heavy lifting, pushing, or just spontaneous rupture which can cause chemical meningitis. The older I get the harder it is to bounce back from brain surgery if I come to a point where I absolutley must have it.

There are so many variants and most people with these tumors, which are quite rare, differ greatly, yet at the same time we share a lot of common symptoms. These tumors are also referred to as cysts. It is really only in the last 10 or more years that the terminology has been changed more frequently to tumor as they are only starting to understand the impact and dangers of them now. This makes treatment a little difficult as the medical experts are only now starting to be taught ways to manage, treat, and operate and medical journals are now starting to be updated with new info. My one surgeon asked to send my scans to Stanford to have the experts in the field study them as my particular type and exact location is so rare, there is only approximately 18 reported cases world wide that they could find in the data base.

I have had to give up my career in social work as the hours, stress and physical requirements no longer worked with my current abilities. I have had to streamline my artsy stuff and biz as well to fit with my abilities. My first summer with Dear Thelma, Love Louise in 2014, had me busy with an event almost every weekend and creating stuff in between. This took its toll on me when the colder weather hit and my symptoms increased, new ones popped up and I became very run down. This past summer I had to downsize my events and even my creating while I focused on trying to get my body into better shape. Many things with this illness are out of my control, but there are some things that I can do to make things a little better.

I have worked on watching the types of food I eat, when I eat, and how I eat. I have eliminated most processed foods and eat whole, organic and often hand grown food. Yes, I still treat myself to goodies but not as much. That means menu planning and cooking and so when I have off weeks where I am tired or my brain is muddled and my taste is off, I tend to eat less, or stick to one type of food, or eat not as healthy just to get something into me. Prior to moving this past summer, I lost 10lbs from my difficulties with food and eating and in September, after the move, I took up walking. It is relaxing, helps me think and the dogs love it. I lost 10 lbs in my first two weeks of walking daily, three times a day, between 20 minutes to an hour each time. By October, I started a fitness routine in my gym three times a week, for an hour, which includes cycling, treadmill, and strength training. Since then I have lost another 5 lbs. I am limited still to what I can do but making my body stronger and lighter and boosting my endorphins has really helped a great deal providing I also remember to keep a balance between rest and not over doing it.

I was watching a talk show in August and a Doctor was explaining how once peri menopause hits, our bodies start to DECAY. We deteriorate, start our reverse journey from life to death. We have the ability to slow down the process with healthy eating, exercise, meditation, and other holistic treatments and life style changes. This really rocked my world. I immediately started putting a plan in place to improve the quality of my life and take control of the areas of my body that I still have control over.

Halloween!

Dear Thelma, Love Louise. My little vintage trailer is tucked away for the winter. I had hoped to fit in at least one pre- Christmas sale but am still working on a location. I have started to upload certain items to my Etsy shop but have not yet sunk a great deal of time into that area as of yet. I am continuing to streamline my product line and re-brand myself somewhat. It is important to stay fluid and ahead of the trends but not too far ahead! I have some concern about where I will keep Thelma once my season kicks in again as I do not think keeping her on the grounds of my apartment complex will be good. As much as I love OEV, there has been many break ins, vandalism, and more to vehicles and property in my location. I can't take that chance. Hopefully the Universe will open up a plan before then.

The good ol' Hockey Game!

It is feeling like a warm summer day out there!

These are my walking motivators!

Beautiful moon wreaks havoc on my poor brain.

I am finally taking time to write. This has been my biggest life procrastination, but no more. In my youth and early twenties I wrote every day, and even published some freelance stuff and then I seemed to stop all together even most of my journalling. If I am ever going to publish those books in my heart, I have to write them first! I have always believed in my heart that I am a writer first, an artist/designer second and a social worker third. Somewhere along the line, that changed. Since the mid 90's it became social worker first, artist second and, writer....non existent. Then in the last two years, artist first, and social worker second and writer non existent. I would like to make the transition to writer first, artist second, and social worker on a volunteer basis choosing my battles!