July 6, 2019

Life goes on.

*You can’t unsee these pictures.*

Journal Entry #44 

This week has been an emotional roller coaster.  As my physical body heals, I am finding struggle with my mental clarity and my emotional capacity.  These aspects of self are not syncing, and I am finding it very difficult to cope with life.  It keeps whizzing by…whether or not I participate.  I am constantly observing and noting the movement, but I am standing still.  As I lay on the couch, in the quiet, completely devoid of energy, my brain makes lists.  Lists of all the things I could be and should be doing.  Those thoughts are completely scattered and random. Thoughts ranging from matching socks to updating our last will and testament.

I am a master at list making.  And a completely deficient in executing them these days.

Some days I have energy.  Monday for example was an amazing day.  It was the first time in months that I actually felt like ME. And it lasted almost the entire day.  I was so hopeful and excited and thankful.  And then Tuesday came.  And I started it, just like any other day by saying “Today is the day!  Life is mine today!”

But it wasn’t.

And neither was Wednesday – it was more like, “fake it until you make it.”  Tim and I went grocery shopping together.  A big outing for me – the first time in 3 months that I stepped into a grocery store. A forty-five minute shop resulted in a 1.5 hour dead-to-the-world nap.  Then, that night, I had a planning meeting for the Annual Canoe Trip that I really had to fake and muddle through because focus for me is as elusive as Bigfoot.

The Annual Canoe Trip is a bit of a sore spot for me right now.

Every year for 20 years my brother and I have led a 5-day White Water Canoe Trip down the Madawaska River with willing teenagers from the Greenbank Community and surrounding areas.  It is a 45km trek, complete with varying degrees of rapids, portaging, wilderness camping and survival…an experience that so many youth never have the opportunity to experience – and it is in a part of Ontario that can only be seen by paddling.  Over the years, we have taken more than 85 different youth down the river, many repeating, staying with us well beyond high school, college, university and even after marriage and babies.  It is just that much fun!  Even when I had my babies, I didn’t miss a year.  Although, the year Faith was born, I only did 3 of the 5 days as I was still nursing.  I always joke and say that this trip “keeps me young” – I love to hear the youth’s stories, see them bond and make new lifetime friendships, grow as they are exposed to new experiences, and laugh and play and have good-clean-old-fashioned fun. As much work as the week is, all the prep, all the clean up, all the responsibility that parents entrust to us to take their children on a wild adventure…fills my heart and rejuvenates my soul.  I think I get out of it just as much as the youth. So it really SUCKS that this year, I simply cannot participate.

The risk is too great.

I don’t have the energy to paddle, portage or carry my weight.  I don’t have the focus or clarity of mind to organize myself let alone others.  I am not completely off of the cannabis at night yet, and will not use impaired judgement with children.  The foot wound cannot risk secondary infection through immersion in water or mud or dirt.  And the canoe trip is DIRTY.

I can’t do it.

And that is something that anyone who knows me would never hear me say. I know that intellectually, this is the right decision.  My heart is bleeding because not only do I know what I am missing out on, but I also am going to miss witnessing the excitement and triumph of 12 youth – 8 newbies – as they succeed on an amazing adventure.  Physically, I am frustrated that my body both internally and externally is not well enough to go or even to do the 3 hour drive.  So, yeah…it sucks.

BUT, my heart is also full.  Because my brother and his wife will be running the trip this year in my absence.  I am helping to plan, organize and pack and they will shop, drive and run the week so that this outreach program, supported through the Greenbank United Church can continue.  There are 12 local youth that will still get to experience a piece of Ontario that many never see, they will still make new friendships, amazing memories and survive the great outdoors.  So, as much as it sucks for me, I am MORE grateful that the program carries on thanks to Bill and Lisa.

Which brings me to Thursday.  I started the day tired because a stupid mosquito landed on my face in the night.  Then on my shoulder.  Then I thought it was under the covers and crawling on my leg.  Then I felt it on my back.  Then my knee.  And then the creepy crawlies took over and no amount of breathing would settle my heart as my brain started imagining the bugs eating me again.  Some may want to label this.  I do not.  Hypnosis has helped to alleviate this train wreck with some of the other triggers that I have been struggling with, and this is just another layer that we have to find a different, more healthy outlet for.  I will share more about this process in another entry…but I am getting help.

So, Thursday was a UHN day.  Tim and I took the subway in, and settled in for a long day…the wait times were 2.5 hours behind schedule.  Which gave me lots of time to visit with my new Leish-friend in the waiting room.  It was so good to hear her experience and realize that it is so very similar to mine…to know that I am not alone.  It was great to share resources and strategies on how to get through this.  We have been keeping in touch through email and text, but the face to face catch up was really important yesterday for me.

Dr. Boggild was pleased with my progress.  The wound on my hand is bandage free now.  It looks like someone took a cigarette and put it out on my hand burning me in the process.  But the tissue is closed.  The wound on my left forearm, has completely flattened, is ¼ the size that it was, and just has a few little puncture holes within it that need to close.  The foot is making huge strides of improvement over the last 8-10 days.  The granulation tissue in the center is very fragile and I was warned that it will likely break open several times before it heals completely.  I am to continue keeping my foot elevated for 6+ hours a day, using the Flamazine topically and am to keep it covered to prevent secondary infection.

The downside to taking a chemotherapy drug that is not recognized in Canada, under the care of a Tropical Disease doctor, is that she is not an oncologist.  There has been very little guidance or support on how to rebuild my system from the damage caused by the chemo.  She only deals with Leishmania…and the signs and symptoms of the Leish are resolving, so by all intents and purposes, I am on my way to being better.  Unfortunately, that isn’t the REAL case.  Most of the symptoms that I am currently experiencing are effects of the chemo…Basically I was told, ‘you did 37 days of treatment, let’s see where you are 37 days off treatment before we investigate more deeply.’ In the meantime, I will do bloodwork, and two “poop” samples (that oughta be fun) to rule out a possible secondary parasitic infection due to the fact that I was exposed to further Central American diseases while on mission to Guatemala in April with open wounds. Unless I have a change in symptomology, I will return for a reassessment on August 12, and will be off work and off my feet until then.  Let’s face it, I have only been done treatment for three weeks.

I need to be patient.

I am thankful to be under the care of Dr. Katrina, an amazing and thorough Naturopath who is helping me cope with the symptoms of chemo, and also helping to rebuild my system from my DNA up.  I know that this piece is very important not only for now, but also for my long term health to keep my body stronger than the bugs.

I will co-exist with these bugs, forever.

I will always need to be stronger than they are.

I.Never. Want. To. Do. This. Treatment. Again.  EVER.

On our way home from Toronto yesterday, Tim had another ‘episode’. He goes in to see our family doctor on Monday, and has tests scheduled for next week.  We are both eager to find out what is causing the chest pain.  I am wondering if he has a hernia or an ulcer…but it could be stress/anxiety.  He has always thrived under stress, that is when he is most productive and flourishes. But the last few months have been personal stress…and that is a whole new ball game.  I am trying not to take on the guilt of creating this stress and health issues in his life– it is bad enough that these microscopic bugs have altered my life, but to see it affect him is something else entirely.  And the kids too.

Right now, I barely have the focus and emotional capacity to look after myself…ego keeps saying “your family needs you, suck it up and help them and do some chores while you are at it!”  But, when I step back and look at the bigger picture, what they really need, is for me to be well.  And I know, that even though to some it will appear selfish, I have to keep me number one, keep pushing forward and keep honoring my bodies healing process.  Even though Tim is struggling aside me, he too is learning how to look after himself.  If I choose to listen to ego, it will prove that I have learned nothing through this process.  I will be telling myself and the world that others are more important than me…that it isn’t important to honor thyself and listen to our bodies…that it is okay to give at the expense of yourself…that boundaries are for everyone except me…that I don’t live what I teach…that I am invincible and above the laws of the Universe…

When in fact, I am not. 

I am no different than you, my struggle is no different than yours, we all have inner battles happening, and for me, it is important to recognize the lessons as they are unfolding.  If I ignore all that I have learned over the last 6 months, all this pain and suffering is for not.  I must ascend.  I must grow. I must continue to learn. I must be patient.  I must honor myself.  And if others see that as selfish, as if I am shut down, or highly emotional or self-centered…that is none of my business – how they choose to see me is their choice.  I am in survival mode here, and it doesn’t matter what other people think about how I am doing that.  I am doing the best I can, and I am okay with that.

Tim and I both need to be well.  We are holding each other’s hands, checking in on each other, and supporting as we can…but we both understand that we each have to survive our own thing right now.  And as hard as that is, it will all be okay.  We will get through this.  One day at a time.  One moment at a time.

I read a quote today that really resonated with me.  Richard Rohr said “Authentic spirituality is always about changing you.  It is not about trying to change anyone else.”  So, as I write today’s entry, I feel like I have found some clarity in this chemo fog, found some satisfaction on this health rollercoaster, found some gratitude in observing the world happening without my participation, found some comfort knowing that the world and special programs dear to my heart will carry on, even without my involvement.  Life goes on.

Thank Goodness.  Life goes on.

I will tell you one thing though, I can’t wait to join in again!

Xo Juli



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