What are your memories of roller coasters do you like them are they scary what do you feel about them?

I am not a huge fan. I went on one with my friends Jen and Pete at Alton towers in england. I remember being petrified when we reached the top and the feeling in my stomach as we decended. My life right now feels like I am on a roller coasters ride! I have hopeful days filled with things i love, then days when my heart is in my stomach and I am being dropped from a height. Mostly I am still trying to live my best life! That might look oneday, like a lot of sleep or it is a walk or hanging with friends and family. Today. I paddled!!!! How awesome is that?anyway, roller coasters! Not a fan. However I do visualize paddling the waves and having to roll with them. Up the crest and down the other side. Just going with the motion. It is all we can do. Each day is a gift. None of us really know what is ahead so ride the wave and enjoy the experience.

Happy place.

Theme park

https://www.altontowers.com/

Update:

Update from Dave: Hi All, a bit of a complicated update today. Currently one of the tumors is regrowing. This is on the right side of Dawn’s brain and so impacts her left side. The new growth is causing two issues, the growth is in the area of the brain that controls awareness of her left side and there is swelling in the motor area. This swelling is causing Dawn’s lack of motion in the left arm and weakness in her left leg. The treatment plan we are discussing is to perform an Ablation procedure to kill the tumor cells and then using a different form of chemo to kill any remaining cancer cells.
Ablation is a where they insert a small probe into the brain to the area that is to be treated and burn, internally, the cancer cells. There are a number of benefits of this over a surgical removal. The recovery time is much faster (home in 1-2 days) and so chemo can start earlier. Lesions in deep areas of the brain can be reached with less damage. Finally, ablation opens up the blood brain barrier making chemo more effective.
We have a meeting with the Dr. on Thursday, and they are planning for when the surgery will happen. There is a slight complication as to who does the surgery and where but not a big issue, just some administrative stuff.
We will let you know when the surgery is happening and how it goes.

But I get up again.

This has not been the best week. Early this week, I got myself in a funk; today is another day. With lots of words of wisdom from my friend Anne and her favorite poet Jon O’Donohue, and my meditation teacher Jeff Warren I’m ready to hop out of bed and enjoy the day focusing on the positive and the things that I can get pleasure from. Today that is going to be my kids and my grandkids. What more could I ask for? Oh, I know, mobility in my left side. I have plans today to make a schedule to keep me from slumping again. I can’t do that again; it was not fun for anybody. But, as Brene Brown says, feel all the feels. I’m certainly doing that.

My daughter-in-law Kyla helped me to make a schedule for my days. I am super tired from the seizure but getting tired of sitting all day! Good job I have Rex to keep me entertained. We even got to play trains for a little while yesterday. I also took a walk while Rex rode his strider Bike. We walked 1.4 miles around Tollgate Farm today and it was exhausting!

I’m feeling quite tired this afternoon, so I’ll just end with the message Dave sent out after my recent PET CT scan to look into the problems with my left side:

Hi all, we have had some troubling news. It seems the tumor in the back of Dawn’s brain is growing again. This is not a major surprise due to the type of cancer. We just discussed this with the Dr. and there are a few options that the Dr. is suggesting. First is sending a thin probe into the tumor area for an ablation, where they burn out the tumor in a controlled way. There is a new chemo drug we can try, and a trial that Dawn can enter. Also, more invasive surgery. The Dr. is working through the options, currently the favored options are a referral for the ablation procedure and entering the trial. The other benefit of the ablation is that it opens up the blood brain barrier to make the trial and / or other chemo drugs more effective. Not good news but we continue to be positive and hope for the best in further treatment. Dawn is basically okay in herself and starting to make improvements from the swelling.

https://www.cancercenter.com/diagnosing-cancer/diagnostic-imaging/pet-ct-scan

Last week or the first week in March I noticed a slowness on my left side. I still walked and did yoga, but over the weekend when we were in Kalaloch, it got worse.

On the Monday March 7th, when I got back, I went into school to talk to the staff about my plans for coming back. On the way out of school, I was walked out by Jill and Nancy. Jill gave me a big hug and I was not able to reciprocate because my left arm would not move! I didn’t think too much of it at the time until later in the day. At 4pm, I was waiting for a call from my oncologist as we had told him that symptoms had worsened. I was sitting in the bed in my yoga room and the phone rang; it was the nurse checking me in. I was little panicked, and in my panic to get to the phone I slipped off the bed! I put my my arm down to catch myself but it didn’t work so I landed on my clavicle and banged my head on the floor. Dave was outside unpacking the camper and he did not hear me screaming and yelling for him, so poor guy walked in to find me on the floor yelling and screaming. We had the meeting with the doctor and he said go straight to the ER and have a an MRI and a cat-scan.

We spent a long afternoon and evening at the ER Swedish Issaquah. The CAT scan showed no bleeding in the brain, so that was good. The MRI showed a huge amount of swelling, so that was not so good. This is what’s causing my lack of mobility. After talking to my oncologist, he is not sure why the swelling occurred. It could be the injections I had to help raise my white blood count, or it could be something else unknown. I’m having another scan that will check the brain activity. I can’t remember the name of the test but it is an MRI to look specifically at the activity of the tumor site so they can tell if the tumor is growing by observing oxygen and glucose test intake. Here is where I’m hoping the keto diet has been helpful and that is not a whole bunch of glucose causing the cells to multiply.

Right now I’m on steroids to take the swelling down and hopefully get some movement back in my left arm, which is not working just yet. This morning my meditation teacher said that everything already is and presents itself when ready!

Can you please be ready now and tell my arm to work!

Kalaloch

At the weekend we took our first trip of the year in Flo and headed to Kalaloch with our good friends Jack and Melinda. They took their new camper, Lance. Kalaloch is beautiful if you’ve never been you need to go! We walked the beaches and ate good food and just mostly breathed in that beautiful ocean Air. We spent a lot of time sitting looking at the water which paid off because we saw whales pass by. We first spotted the blow hole spray and then the humpback of the whales. That was very special and at nighttime the Stars were spectacular. Once again the solo stove was fantastic and kept us warm while we ate outside and then of course Flo is cozy at bed time.

When I started this blog just after surgery I wanted it to be a way of communicating with the people who wanted to know what was going on in my world. Since then it has become more than that for me.

It has become a way of journaling my thoughts as I move through this new reality. Thank you for coming along for the ride I really appreciate it. Having said that, if there are things that you just want to pass over and, simply skip to the update, no problem, that’s good with me too.

One of the many new things I’ve learned has been the power of meditation here is the piece you can skip if you want to go straight to the update.😄

Meditation

I am really new to meditation other than the short meditations that Krista and Josephine did during yoga. I also tried doing a few group meditations. One that I remember clearly was on our paddle boards on a very cold evening we were all freezing cold, and I was oblivious to the discomfort!

Anyway, meditation, what is it? And how and why do it anyway?

Those of you who follow me on Instagram will know that I’ve been doing a daily meditation using the Calm app so that I can learn more about it. A friend also recommended a podcast-On Purpose- by a guy called Jay Shetty which I have been listening to in order to learn more.

I use meditation in the following ways to help me sleep at night, to help me during an MRI, in general just to calm me down and relax into it without realizing it, I have tried all different forms of meditation and I like them all but for different purposes so there is breathwork, visualization and mantra meditation. If you have any resources are tips, please let me know since I am just learning and exploring.

6 Month Update

It’s been so nice not taking chemo every night my body does not feel much different quite honestly, my appetite is better my energy level is about the same with naps most days. This makes me think that my chemo is not too bad other than reducing my white blood count, which since being off the chemo has increased a little bit, we will see next week if I’m able to go back on the chemo and keep working on keeping this tumor from growing.

What can I now do?

• walk moving my arms and legs in opposition as in an army march.
• turn my t-shirt right way out
• turn the bath tap off and on with my big toe.
• hold a conversation for more than 10 mins.
• clip into my cross-country ski bindings with relative ease
• Hike 1000ft elevation gain no problem 😊
• Can do transitions in yoga without falling over.
• Can cross country ski 2 miles. One mile without falling over!!

My white blood count has been low for the last two weeks. On the last blood draw, it did not increase by enough, so I was not able to restart my chemo. Maybe next week? There’s not much I can do to help it so I have to just be patient. Seems like being patient is a lesson I’m really having to learn in this journey and that is totally fine.

What is still hard…

• Telling people my story to people who don’t know about it. I get emotional.
• Balance with my eyes closed
• Stand on my left leg for more than 10 seconds without over balancing. This means that most of the standing balance yoga poses I am still working on.
• Downhill Skiing.

These are the biggies. I know there are more, but I am trying to stay positive!

One of my big take away from Jay Shetty’s podcast is that he recommends starting your morning by NOT looking at the notifications, news and negativity on your phone but rather by creating habits around- Thankfulness, inspiration, meditation and exercise. This I can do!!!!

On Rattlesnake ledge, President’s Day.

I am asked this question a lot. How is your quality of life? My oncologist on diagnosis told me to “live my best life”. What does this mean? Are we all living our best lives?

The Oxford dictionary defines this as “The standard of health, comfort and happiness experienced by an individual or group” There it is again- Happiness!!!

When I look at this diagram of the indicators of quality of life, in my opinion I have a great quality of life, other than my health diagnosis. True, my health has limited my options for leisure time and now that I have more time in my day that is unfortunate however when I look at the other indicators, I am doing great!!!Maybe it is about the amount of weight you put on those indicators. Some of them weigh in high- Family, security, mental state, social life, material state.

Choosing to flip my thinking helps a lot.

I only paddled to the lake and back, flips to I got to paddle to the end of the lake and back. The words we use MATTER!

Anyway, enough of life according to Dawn. Here is what you really want to know:

MRI Update

Here are the notes from the MRI. Maybe you can make more sense of them?

FINDINGS:
Prior right parietal vertex craniotomy. Heterogeneous bilobed enhancing mass is redemonstrated medially within portions of the right cingulate gyrus. The more anterior component measures up to 2.4 x 2.0 cm, previously 2.3 x 2.1 cm. The more posterior component measures up to 2.7 x 2.0 cm, previously 3.0 x 2.3 cm. Overall, slightly smaller. Similar enhancement connecting these regions and thinly along a surgical tract extending superlaterally within the right frontal lobe. On perfusion imaging, RCBVs within the more anterior enhancing area is between 2.1 and 3.7 inferiorly. RCBVs within the more posterior area is between 2.2 and 2.5. Similar postsurgical parenchymal loss within the right posterior body of the corpus callosum and some of the overlying right frontal white matter, with associated areas of internal and surrounding hemosiderin deposition.

Non enhancing T2 hyperintensity within portions of the surrounding / overlying right frontal lobe and the right parietal lobe is slightly increased. RCBVs between 1.3 and 1.7. There is similar mild local mass-effect on the superior aspect of the right lateral ventricle. Ventricular caliber otherwise appears on remarkable. No additional, new or worsening enhancement.

Translated this is NO NEW GROWTH and a shrinking of the tumor size.

Bottom Line: The oncologist was very happy with the results. As my sister-in-law Sabine said, Doctor happy, I am happy. We need to keep on doing what we are doing as for now it works!!!!

As always, Thanks for all the positive messages of support.

What makes you happy?

How do we know when you are happy?

Do we need to be happy all the time?

I was having a few moments of sadness around my situation and when I expressed this to my Tribe they kept telling me that it is okay to have moments of sadness.

I wanted to explore this idea and so found the podcast that I linked below. Dr. Laurie Santos is an expert on human cognition and is being interviewed by Glennon Doyle for her podcast ” We Can Do Hard Things.”( S1 E58)

https://pca.st/podcast/f22f11b0-912b-0139-744a-0acc26574db2

Continue reading →

Well, it will be on January 25/24. I still get confused about the date of everything!!!

Progress so far!

I thought that it would be interesting to record my progress so far as honestly it does not seem that I make much progress, so this was to see for myself that progress is slow but steady! I have a couple more weeks before the official 6 months. Maybe I can add to this list? Or how many can I add to this list?

• Can fold laundry
• I can stand on my left leg for 10 seconds
• My arms lift up and down in sync
• Can chaturanga almost equally on both arms
• Can lie on my back and lift my feet over my head to touch the floor behind
• Have paddled 3 times without falling in
• Can squeeze my left and right glute muscle
• Not bumping into things as much
• Can put on my shoes without help.
• Can put pants/ trousers on without sitting on the bed
• Can sign I love You
• Don’t need to wear an eye mask in a car.
• Just taking 1 nap every few days.
• Rarely hold onto things with my left hand or let taps run and leave doors open.
• Get up from sitting on the floor, unless my legs get in a tangle. Then I don’t know which is which!
• Can unscrew the childproof caps
• Cooked some meals
• Met someone I haven’t seen since diagnosis and didn’t cry- Good or bad?
• Staying engaged on phone calls
• Eye Twinkle says Daisy
• My voice is not as monotone
• Maintaining a positive attitude says Thomas
• Not forgetting what I am doing all the time

What the heck is that all about and what can I eat?

When my naturopathic oncologist suggested I switch to this diet. We all went into immediate research mode!

First it is important to understand how cancerous cells divide.

“Cancer cells can divide without receiving the ‘all clear’ signal. While normal cells will stop division in the presence of genetic (DNA) damage, cancer cells will continue to divide. The results of this are ‘daughter’ cells that contain abnormal DNA or even abnormal numbers of chromosomes.

https://www.genentechoncology.com/pathways/cancer-tumor-targets/hallmarks-of-cancer.html?c=bio-171f135f175&gclid=EAIaIQobChMIv8P1nsSq9QIVIw_nCh1VJgzBEAAYASAAEgKIpfD_BwE&gclsrc=aw.ds

So basically, the cancer cells have no filter and will keep reproducing even though they are abnormal.

The science is complicated! but they don’t reproduce like regular cells, think mitosis and the krebs cycle from high school biology. It is complex and way beyond my brain’s capabilities! The bottom line is that the cells use glucose as its energy source to multiply. The more glucose that is readily available the more the cells divide!!!!Thus- the goal of the keto diet is in cutting back the amount of dietary glucose available to the tumor cells so slowing or stopping their growth. The ketones produced in a keto diet, also disrupt the pathways associated with the progression of the disease. One important instance of this is the blood/brain barrier. Low carb diet allows the chemo drugs to target the tumor which is really important. Again, the science is beyond me!!!!!!!

SO, what do I eat?

Breakfast is a rotation of:

• Smoothie

• Eggs

• Almond milk yogurt and Dave’s granola with berries.

Lunch

usually, a salad with kale or spinach and a protein on top

Dinner is veggies and a protein!

That is it!!!!

Starve the buggers!!!!

How am I doing?

Honestly this last couple of weeks have found me with low energy! I am almost back to 2 naps a day between PT, yoga and walks. It is fine though I have the luxury of time right now as I am not at work. I miss the buzz of school, the camaraderie with staff and the energy of the kids however I also can’t imagine being there and trying to keep up with everything. Just writing this took a few hours!

I was very anxious about the second dose of chemo that I take 5 days out of 28 but it seems not to make much difference to my body. I am just poisoning it double for 5 days in a month!!!!

I know I say this each blog post but I truly appreciate all the support I get from near and far. It means a lot.

Coming up….

Feb 10th is MRI #2 Here’s hoping for no new tumor growth!!

Christmas Day marked 4 months since surgery diagnosis was the day before. Everything happened so quickly I don’t think I really had a chance for us to sink in. The ski season really brought it home I was hoping that all the PT that I’ve been doing, and the yoga and the walking would help with the skiing and maybe it has it’s just hard to tell. I did what I could at the time, so it is what is thank goodness for friends and my family. I am stealing a quote that Anne posted.

“Of love that waits to take you home to where you are known and seen and where your life is treasured” John O’Donohue. I am also stealing her sentiments, “My friends and family fill my heart and fuel my soul” Anne Melgaard.

I have taken so much for granted over the years. My health, my ability to do what I want in the outdoors. That has mostly gone now, and my definition of activity outdoors is has radically changed. I am learning a new way of being, hopefully with work and perseverance it will be temporary or short lived.

My wonderful friends invited me on a short ski tour up Snoqualmie Valley trail, nothing like what we did last year. They were absolutely amazing it took 3 of them to help me get my foot in my skis and hold me up when I overbalanced Regardless, we had fun and smiles as the trail was beautiful with lovely soft snow on the ground.

It has truly been this ski season that has brought home what is happening to me. I keep telling myself that I am just 4 months in and to be more patient!

My Update

I started a new chemo drug that I take 5 days out of 28 plus a lower dose chemo every day. I have figured out how to manage the nausea. Thank goodness as I did not like that!! Dave continues to be amazing with his spreadsheet to help us keep track of it all. Plus, he is still looking for delicious keto meals to cook for me!

I keep up my PT with a weekly zoom meeting with Edge Physical Therapy. Then I do my exercises every day. Yogo has been harder as I have Chorioretinal scar on my right eye. I am not really sure what this is but it hurts when I put my head down. not helpful when doing yoga.

Other than that, I am on the routine of:

• weekly blood draw
• monthly zoom meeting with my oncologist and:
• 2 monthly MRIs. The next one is February 10th.

HAPPY NEW YEAR. Let’s hope it’s a good one!!!!

I get a lot of people commenting on how calm I seem through all of this crazy “adventure”.

My answer is, in no particular order of importance!

• Dave to keep me sane and grounded
• My family
• All my wonderful Warrior Angels who support me in many different ways
• Yoga

I began my yoga journey in 2013, in the mountains with my adventure buddy Anne. We skinned up Hyak face and skied to the bottom of the chair on the backside of Hidden Valley. Anne had me hold warrior 3 pose while she set the selfie timer for our first SnoYoga pose. I had no idea what warrior 3 was! Playing in the snow with Anne and my other adventure yoga buddies got me serious about learning how to do the poses or as I now know, the Asanas.

In May 2013, I bought a 12 class pass to Ignite in North Bend https://ignitedanceandyoga.com/ The pass lasted 3 weeks. I was hooked!!!! I then bought a membership and went to as many classes as I could! I have learned from some amazing yogis at that studio. I then began to follow the yoga community on instagram and began some of the ‘challenges’ I started many but did not always finish them however, I learned lots and slowly progressed in my asana practice.

On thanksgiving of 2013, I went to Josephine’s morning class where she told me that yoga is not just about the asanas but that there are actually what is referred to as 8 limbs of yoga (forgive me if you know all this but this was all new to me!!) She \explained that together the 8 limbs of yoga are a way of being in the world. “A way to cultivate inner happiness and free ourselves from negativity.” The Path of the Yoga Sutras” Nicolai Bachman.

Josephine talked about Santosa, one of the niyama-s. She described it as being content with one’s actions, with what one has and, with what one is doing or has done. Being content with who we are leads to inner happiness according to Bachman ” Santosa means being satisfied with whatever you are doing…as long we are doing something to move ourselves in a positive direction” This goes along nicely with a gratitude practice.

What am I rambling on about? You ask yourself. Well, when I look at my life in this adventure, I am happy with what I have, where I am and who I am. I may have an interloper in my brain, but I am not going to let that ruin the enjoyment of my one wild and precious life!! As Dave keeps saying ” it is what it is!”

My Update

I just came off 4 weeks of a break from no treatment and it felt amazing! No trips to Swedish for radiotherapy, no chemo, no more seizure drugs. As the weeks went by, I began to feel stronger and stronger! I even went paddleboarding!

I still have trouble with a lot of noise, and I get tired with a lot of stimulation plus I have a constant feeling of being out of balance as my brain works to figure out what is happening. If you walk with me, I will likely bump into you a lot! I still talk to my left hand, so my brain understands what it is supposed to do. This is all connected to the left side neglect due to the tumors pushing on the right side of my brain. I am gentle with my hand and brain though and talk nicely to it!

What is next?…As I said in the last post. I need to keep doing what I am doing with diet and positive thinking, add in daily low dose chemo plus one other drug that is known to be a stem cell suppressant: (hydroxyurea if you want to look it up) taken 5 days every 28. I will have an MRI every 2 months and monthly blood draws with follow up online meetings with the oncologist. I have also added daily meditation to my daily routine. I am a busy girl!!!

Have a wonderful winter break. Be sure to find time to relax and unwind. You are worth it!

If you are into podcasts, treat yourself to an episode or 2 of this one https://bethkempton.com/podcast/