Reality of It

A lot of people do not understand my life. They don't understand what is happening largely in part from the word “cure" going around the interwebs so often now. Let me break it down:

My cancer is now incurable. That is the opposite of curable, so you're aware. All your fucking miracle cures, secret recipes, wonder drugs, etc are not going to change that.

I live in perpetual fear that the pain I feel is the cancer growing or spreading. Once it stops responding to treatment, it will grow, it will spread. It will go to my brain or my liver or my lungs and take over. It is not “being negative” or looking to the darkside of things, this is the nature of my cancer.

My cancer is aggressive. That is good and bad. Aggressive cancers grow and take over quick (the bad part). Aggressive cancers also tend to respond well to chemotherapy (the good part). Chemo tends to attack fast growing cells, that's why aggressive cancers sometimes respond well whereas slow growing cancers can be more resistant to chemo.

Since my cancer is aggressive, my prognosis could change in a heart beat. Literally. The cancer is on my blood, my heart is pumping it around. One day I could be fine, the next day it may have spread.

This is my reality. When I say that I needed to start a GoFundMe because I want to not leave my family in debt and want to do fun things with the kids, I'm saying that because I really am on the precipice. I could fall in any moment. I don't want to die. I want to see my kids grow up. I want to see my 25th anniversary. I want to have a 40th birthday. But that might never happen.

I'm writing this from a bed in emergency, waiting for a ct scan because my cancer might be moving and we're trying to figure it out. Life changes in an instant. I'm trying to make my life last as long as possible. But cancer is as much of a bitch as I am.

Journal Entries

I'm going to start a new thing and see how it goes.  I have a new journal thanks to Compassion That Compels and I will be occasionally posting on this blog the entries.  Names may be abbreviated or changed for privacy sake, but I will be otherwise keeping the posts the same as the written entries.  It will give a further glimpse into my life and I find I still prefer writing by hand late at night, when I normally write in a journal.

Stay tuned...

Post Conference 2018

Mike and I were privileged enough to attend the 2018 Young Adult Cancer Canada Survivor Conference at the beginning of the month.  We had the chance to connect with old friends and make new friends as 99 survivors/supporters were in attendance.  I was able to help with making sure everyone had some fun by raising funds for a social event, karaoke (YACCaraoke), at Karaoke Kops. It was the hottest spot in St John's that night!  Huge thanks and much gratitude to the staff and owners of Karaoke Kops!

We were able to attend workshops and discuss matters that have come to light in the past year.  There was a panel, a Big Cancer Hook Up, and many presenters.  Saying the conference was a success for YACC and their ideals is a gross understatement.

The aftermath of conference is one thing that is never easy to deal with.  It's the pain of having to leave your friends for at least another year.  It's the fear of how many friends will die between now and next year.  It's the fear that this was your last year.  That's the thing about making connections: they're awesome and help alleviate your loneliness and fear of isolation, but you are brought into this circle because of a terminal illness, some of us get to stay around longer than others.  I could never say I regret any of the connections I've made through YACC.  I've cherished every friend that I've met through them.  I weep at their death because they had so much that they wished they could do and I weep for the hole that their absence leaves in my heart.  But they are still in my heart.  Always thought of and fondly remembered.

I try to soak in the energy that many gave over the conference.  The laughter and joyful jubilation that saturated us.  To take the tears that were shed in stride and try to remember it is for my loss I cry, that their pain is finished.  I giggle at the jokes we told, I hold dear the smiles and happy faces, I recall the strong hugs and high fives.

I will try to spread the happy.  I will try to remember it is okay to cry.

 

Me and Mike on the bus for one of the social events at conference

Love that we had the opportunity to fly with Porter Airlines