My oncologist wanted me to have 5 weeks to recover from the surgery before starting chemo and radiotherapy. I had 5 weeks to get strong! lets go….

Leaving the hospital was a mix of relief to be going home but a little anxiety for what was to come. In the hospital they kept a close eye on me. what if something goes wrong? What if my blood pressure shot up? What if I had a seizure?

Walking in the house was amazing. I was overwhelmed by the number of cards, flowers and well wishes! there were 2 big posters on the walls. welcoming me home. and of course, my amazing family!!!!!!

in the picture: Dave, Mark, Steve, Anna, Kelly, Jonathan, Dawn, Sophie, Daisy, Kyla, Thomas and Rex.

Missing from the picture are Roland, Morgan and Merritt.

Walking was the first form of exercise and I quickly went from walking a mile to walking 3-5 miles on a regular basis, usually in 2 shifts. I walk the river path near my house. I am joined by Dave most days for one of the walks and have walked with any visitors who will walk with me. We have been so lucky with the weather. I usually dodge the rain!!!!

Yoga has been more challenging! Many of the poses challenge my brain as well as my body strength and balance!!! I started being able to manage 10 minutes and am now up to 30 minutes.

One of the most tiring activities is being around a lot of people and trying to keep up with the conversations, particularly if there is also music playing and when voices get loud. I think my brain just has too much stimulus to organize and prioritize.

4 weeks post surgery, we took a family trip to Mazama. This was so much fun. I had to wear my eye mask for a lot of the journey but it was worth it to hang with the family and enjoy some sun. We went to listen to music at the Mazama store but that proved to be too much!!! Walking is definitely what my brain wants.

I got into a nice routine during this post surgery time, breakfast then morning yoga or walk, followed by A nap then occupational therapy aka house chores! They are slow but I can get a few things done while Dave works. followed by another nap, walk #2, dinner, then the cognitive therapy, which includes doing brain puzzles, Journaling or writing this blog. Hence why I am so slow with updates.

During this time, I also got fitted with my Radiotherapy mask. Look it up on line. They look like a form of torture. Also, during this time, and after some research and a meeting with a naturopathic oncologist, we switched to a ketogenic diet. This basically means no sugar and low carbs with the aim of starving the cancer cells to slow their growth in my brain. My family and friends have been amazing in their support of me making this switch.

The last weekend before chemo and radiation started, Dave and I went for our annual trip with Rob and Roberta, this year we went to Sequim. This is usually a wine tasting weekend but not this time. We enjoyed walking in the woods by the ocean and sightseeing in Port Angeles.

In the hospital I had an Occupational Therapist (OT), a Physical Therapist (PT) and a Speech Therapist. They each had their different roles but by far the hardest was the speech therapist, she did not really work on my speech but my cognitive functions!

Occupational Therapy:

For this, they had me hanging up clothes and folding laundry. I practiced making a cup of tea. All very useful! The most difficult thing was folding the laundry. Anything where my hands had to cross was difficult. My brain wasn’t paying attention to the left side of my body so I had to reteach it to do so, and I’m struggling with this still. One of the things they also had me do was turn bolts onto screws, and that was very hard. I also had a hard time letting go of things with my left hand. I have to tap it and look at it and remind it to let go!

Physical Therapy:

This was my favorite. I got to go on walks outside, they set up obstacle courses for me to maneuver, and had me on a Wii Fit which I was terrible at! Mostly because I don’t play video games! I enjoyed trying to beat my timed scores each time. The hardest part of physical therapy was balancing on one leg and standing upright with my eyes closed. Again, my brain isn’t recognizing my left side. This is unusual for me because I have done so much yoga, my balance is normally great!

Speech Therapy:

My speech therapy was actually speech and cognitive therapy, and it was the hardest. It was working on thinking, reasoning, and remembering. One of the activities she had me do was giving me the brainteasers where she gave me a short story and I had to figure out the details of what each character was doing or wearing and so on based on the information provided. They were so hard they made me sweat! I had to think very hard on the answers. My short term memory was a little hard, typing has been hard, hence why it took so long to get this blog up and running! It involved so many steps that were difficult.

The surgery and subsequent rehab

Thursday August 26th

My tumor removal surgery was scheduled for 3:30pm. I had a wonderful surgeon, Dr. Charles S Cobb. The original plan was to remove the front mass, and then he hoped he would be able to remove some of the second one too, but wasn’t sure if he could without damaging my motor nerves. Fortunately, he was able to remove the entire front tumor, and even with the difficulty of the location of the second one, was able to remove 90-95% after getting in my head and assessing the situation. I stayed in the ICU for a few days to recover while the swelling from surgery went down. I was only allowed one visitor so Dave kept me company. I celebrated the small wins – walking 1/4 of a mile in the hospital hallways!

Directly after surgery I had movement of all my limbs which was a good sign. The second tumor was on the right side of my brain, right near the bits that control motion. There was some risk that my movement would be affected. The day after surgery I was able to lift my left arm and leg but the next day that got worse as swelling on my brain went up. Once the swelling receded, and with plenty of rehab and encouragement that motion came back.

August 28th

I was moved to the rehab floor on the 28th to start physical and occupational therapy. I didn’t have a clear day on when I was going to leave so I worked hard in the hopes that I wouldn’t be there for too long. I was in a room on my own with an alarm on the bed and chair as I was a fall risk. I had to call for a nurse to help me get out of bed!!!

Tuesday September 7th – The Great Escape!!!!!!

They agreed to release me to Dave. The journey home was terrifying!!! The brain receives millions of pieces of information at a time and my brain was not able to [process or filter fast enough. I wore a face mask the whole way home and while driving for the next few weeks

Here is the timeline of events leading up to going to the ER.

Spring 2021

I first began to notice that I was feeling dizzy. I talked about this to my coworker, Karen, we were thinking inner ear infection or vertigo. I dismissed this and ignored it for a while.

June 30th

I noticed swaying after paddling the Joema Jellies. This continued after all paddles.

Strange things happening in July

I ran 3.5 miles at Tollgate Farm. I recorded that my left leg needed strength.

I fell backwards with my board as I left the water with Christi at Golden Gardens. we had paddled to La Tortuga for coffee.

On the way back from a bike ride to Snoqualmie Brewery I fell off my bike when I stopped to talk to a couple. I did this twice.

During a swimming lesson with Roberta, she laughed at me as I was swimming in circles!

August 11th

Finally went to the doctor for a consult. They did bloodwork and didn’t find anything

August 12th

I went on a solo trip to Lake Kachess to camp and paddle. On the way there my left hand would not turn the steering wheel the way I wanted. Freaked me out!

August 21st

Dave and I took Sophie and Roland to Bainbridge Island. I couldn’t feel Sophie’s hand when I was holding it.

August 23rd

School starts with a LIT planning meeting. I did a paddle first at Rattlesnake.
Later, at a meeting to talk about an upcoming weekend paddle trip, I couldn’t find my wallet and couldn’t feel it in my bag!

August 24th

I did a twenty minute run and noticed my left leg dragging and thought I needed to get it stronger.
Kick off at MSHS, then the intense work to integrate literacy to science. two of my close work colleagues said I did not look right and then I found I couldn’t focus and called my doctor, who told me to go to the ER.

I had an MRI at Swedish in Issaquah, where they found the two tumors. A neurosurgeon was located and I was moved to Cherry Hill Hospital in Seattle that night. When the paramedic arrived to escort me in an ambulance, I stood up to walk. He immediately asked me what I was doing. I told him I was leaving to go to Cherry Hill. He said he was shocked that I was even able to walk! When I asked him what he meant, as no one had really fully explained what was going on at that point, he asked if I was sure I wanted him to tell me. I said yes please. He told me that I had two tumors the size of medium lemons in my brain, and that he was surprised I was even able to walk!