Journal Entry #35

Have you ever sat with a decision, made the list of pros and cons only to find out that they are evenly weighted leaving your choice to be a crap shoot anyway?

This week has been the hardest struggle of all the weeks I have faced yet.  Physically, emotionally and even spiritually.  This week, I found myself pleading with Divine to just make it stop…make it go away.  Foolishly, I thought that I would bounce back quickly when I finished taking the Miltefosine. I underestimated the power of this death in a pill.  Honestly, I think if I stayed on that drug long enough, it likely would kill me.

I explained to Tim, that this week I feel like I have been in and out of consciousness…not really…but I can’t remember for certain who stopped by, if I had conversations for real or just in my head, I am forgetful and everything is a blur.  Likely, this happening as effects from the Gravol and cannabis but it could also be chemo-brain. Whatever is causing it, I am happy for it to go now – I like my memory, clear thinking and organizational skills and hope they return soon.

I will admit that each day is a little better than the last.  I went to see Jane this week, and she gave me a little lift with a hair-cut to help me feel human again.  I also went to see Emily this week for a modified pedicure. The skin on my feet was cracking, dry and overgrowing to the point where you couldn’t see my baby toenail.  I can’t wear sandals yet, still only flats when I go out and no socks. I feel like I am walking on air for the first time in months!

Another beautiful blessing this week was when the Courage Circle Sisters came to give me group Reiki/Energy Healing. I was feeling very poor when I climbed onto the table, but the love and kindness through their care and energy lifted dark and painful patches from my body.  I realized through the session just how tightly I have been holding on,fighting to keep the medicine in my body so that it can do what it needs to do.  Now, it is time to let go of the medicine to truly let my body heal from this ordeal. It is a completely different mindset and immediately following the session with the ladies, I gave myself permission to let it go.

What did the ‘let go’ look like?

Tears.  Fetal position on the bathroom floor.  Retching until nothing other than foaming bile escaped. Restless sleep, even with copious amounts of cannabis and then…yep…you guessed it.  More diarrhea.  I mean, really, I haven’t eaten more than a handful of food this week, how can I possibly have so much shit in me?  I guess I am just stuck in the vicious cycle of dehydration?

Enter Dr. Katrina.

All week, I just kept thinking “just hold on until Thursday, Katrina will help get me fixed up” and in all those moments that were dark and dreary, I knew that relief would come when I went to see the good Doctor.  This I realize, can be a dangerous mindset, setting one up for disappointment.  When we put pressure or expectations on an experience, we remove the fluidity of the experience.  If we are so focused on the expectation or an outcome, we can miss the moments in between as the experience unfolds.  Still, I didn’t care…I needed to hope this week…hope that there was something to help my body help itself to heal.  I was desperate.

We discovered a few things through blood work this week.  I present with anemia, low vitamin D, B2, B6, iron and also decreased liver function.  There were a few other things, but I can’t recall them at the moment.  Dr. Katrina recommended starting IV therapy to help get me rehydrated, nourish my cells and replenish essential nutrients that are required to stabilize my gut.  She mixed up a cocktail that would normally be a 45 minute infusion.  As I am experiencing severe dehydration, the infusion took over 2 hours.  It was cold going in, my muscles started cramping in the arm which subsided when we slowed the drip down.  Unfortunately, midway through the IV, the cannabis had worn off, so I sat with a bucket, heaving and crying both in pain and nausea.  The good news is, Marilyn (my chauffer and support) held my hand and talked calmly to me and we were able to complete the therapy.

Exhausted, I returned home to make the final decision…you know the one I have been wavering on all week?  A family trip to Darien Lake for Father’s Day Weekend.  A trip that we booked back in January, with seven other families.  Father’s Day get-aways have become a bit of a tradition in our house since we had kids – when awesome memories are made and precious family time is spent together- no gifts, just each other.  This particular trip to Darien Lake, is one that the kids have been looking forward to for months.  Anyway, I am sure you can guess all the pros on my list, and if you have been following along with my journey, you will surely know the cons too.  And honestly, the lists were equal.  The doctors this week basically said that I can stay home and rest in bed, or I can rest in bed in our trailer…either way, there isn’t anything else to do, other than wait out the Miltefosine exiting my body.  The biggest hurdle for me, is that I would be without cannabis for the weekend.  And that is all I have been using to lessen the cramping and the nausea. So, a crap shoot.  Disappoint the kids and stay home feeling sick, or make the kids happy and go away feeling sick.

You’ve probably guessed which way I gambled.

Depending on who you ask, I made the right decision or I made the unpopular decision…I guess time will tell.  The weather was terrible last night and the wait at the border was long. Before we left the house at 8:30pm (it took me that long to find the courage to commit) I took the CBD oil that usually lasts 4-6 hours, and I vaped hoping that the pain would be covered for the drive at least.

The trek was longer than the cannabis lasted.

I survived the last hour by breathing through it, venting myself with cold air, rocking and positive self-talk.  Distracting myself with the Raptors Game on the radio. And when we arrived at ‘Campground de Walmart’ it took everything I had to crawl into my bed in the trailer at midnight.

This morning I conserved Tic-Tacs by staying in the trailer while the rest did the groceries.  Cam and Alicia have offered to look after all the meal prep and have helped Tim with set up and getting organized so that I can only be responsible for myself.  Tim has arranged for me to have a motorized scooter should I be feeling well enough to actually go into the park with the kids to watch them have fun.  He also packed me a hammock and a reclining chair so that I have the comforts of home. We are prepared and all of the families that we are with are very supportive and caring and understanding of our situation and helping where they can…but most importantly, they are all having fun.

And I am having moments of fun.  So that is a good thing because I am not sure how this will all play out.  One thing I know for sure is that life is going to carry on no matter what bed I am curled up in.  And just because I am curled up watching life go by, does not mean that my family should be too.

It’s a crap shoot.

Xo Juli