Wednesday, 11 July 2018

Ode to Today

I am exhausted, I am stressed
My mind is spinning, the house is a mess.
Cleaning is not happening, a guess?
No motivation is currently possessed

I must nurse our canine
Corral the kids, protect the felines
“Don’t hold her like that” is a common line
Ask me how I fare? “Oh, fine”

Chemo to take, and caffeine to think
Want to just slip in bed and sink
Hide in the covers, gone in a blink
Forget, disappear, let my mind sync

Clothes to fold and put them away
Stand looking at the room with only dismay
Appointments, calls, food needs made
Close my eyes and heart to today

I cannot feel outside of the void
Different methods with, I have toyed
The result the same, still annoyed
Throw on a smile, a worthy decoy

Do what I must and continue
Trudge, walk, crawl, roll through
Tomorrow may be different, true
But the darkness still floods deeper in hue

Monday, 9 July 2018

Moments of Thanks and Inspiration

I'm in a bad spot right now.  To help avoid a "downer" blog - which seem to be too often lately - I'm taking a moment to try to think of a lot things I'm grateful for:

  • I have my soul mate as my spouse. Mike and I honestly say the same thing at the same time quite often. We can finish sentences, we want to cuddle at the same time, we can be apart or do different activities and not feel left by the other.  I can never be grateful enough for him.
  • My talents. I love that I can do a lot of things on my own. I do wish that I could do them more often but that's leading into some of the dark stuff, so let's avoid that part. I love that I can draw to express myself, I love to write, to do woodworking, metalworking, I can build things with my hands with many mediums, and love to sing.
  • I have some pretty amazing friends. Friends that will do whatever they can for me, that go out of their way to see me smile, from watching the kids to sending surprises that mean a lot to me in the mail.
  • My kids are sometimes exasperating but they are also a source of happiness. I get hugs, kisses, and "I love you"s often.
  • I'm able to still do some things, even if I cannot do everything any longer.  I can still feel slightly useful as I am not bedridden.
  • My cats and dog love me and give me cuddles. 
  • I have a chemo regimen that appears to be working.
  • I apparently inspire people to do good.  This one I want to talk more about for a second:
I have had a lot of people tell me ways they were inspired by my actions.  It has been from being their new selves after surgeries or other issues that made them have scars or marks that make them appear different than the average person to stepping up and helping another person.  One person stopped worrying about wearing a prosthetic breast because she saw me freely walking around with one breast (and the remaining breast made it extremely obvious I only had one).  In relation to that IDGAF attitude, others have stopped trying to hide scars or missing hair, etc, and told me it was because I gave them the inspiration to just care about how they saw themselves instead of how others might react.  Some have told me they cannot believe the amount of things I help come to fruition.  I helped save a retreat, I helped make welcome bags more full than they would have been, I organize events with little effort.  To me, it is little effort.  I can plan these things easily.  I know enough about Excel and Word that I can make things very simple.  I have an ancient version of Adobe Photoshop and I can work that thing to my needs extremely easily.  If I am going to be an inspiration, I want you to take away one thing from me.  This is why I do what I do.  This is what makes me want to do things for others, whether they know it is me or not:

If something needs to be done, do what you can.

Change does not happen by shrugging your shoulders.  Help does not come from twiddling thumbs.  You cannot help if you are too worried what others will think of you.  Follow your heart, it is speaking to you, it twinges when you know that you can do something to right a situation.  Be selfless sometimes, think of how happy you can make someone with something as simple as a small, inexpensive gift or by doing a selfless act.  Share your friends' fundraising efforts, share their attempts to go outside their safe zone, share their events, share their triumphs, help where you can.  Can you imagine a world where everyone tried to help when they knew they could?

Thursday, 28 June 2018

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.

Monday, 25 June 2018

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...

Sunday, 24 June 2018

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

Thursday, 31 May 2018

After Shock

Something that comes up with a lot of "lifers" or "thrivers" or those with terminal cancer* is that things are quite different from those with early stage or curable cancers.  We're the taboo cancer, the cancers that don't go away for good after our treatment.  Treatment is for the rest of our life, whether that is days, months, or years.  As much as people want to support you, the mass populace is all gun-ho to help the second you are initially diagnosed.  That's when they understand you'll be starting treatments so you will be sick or tired or busy with multiple appointments with multiple doctors.  Add a couple months and they seem to lose interest in assisting you with what really dogs many young adults with cancer: finances.  They are used to you having cancer now.  This is the After Shock of Diagnosis.

Cancer costs a lot.  It can cost your life, but before that there are expenses like: treatments that your province/insurance does not cover, parking, gas to get to the never ending appointments, transit passes, car repairs/maintenance from having to drive to those appointments, meals when you're just too weak or depressed to cook, childcare, and so much more.  All these things add up quick and your debt gets larger and larger.  A lot of young adults get diagnosed before they even thought of getting life insurance or they are diagnosed before the probation period and the coverage is canceled.  That means once we're gone our families will be left in debt.

I have killed my pride and tried the gofundme route.  I have asked for help.  I am fortunate that I have a few friends that are sticking by me but it's the same ones each time and I cannot see them go in debt trying to help me.  Will not rob Peter to pay Paul.  This is something that isn't going to stop, at least not until I die.  I really am running out of options, everything I'm attempting fails.  I cannot work due to injury.  I cannot sell my art.  I cannot sell my possessions.  I cannot get a gofundme to work.  Where do I go now?

Where am I going with this?  No idea.  I'm angry and frustrated.  I needed to complain. 

*A lot of people use different labels for living with cancer

Wednesday, 9 May 2018

Death - *some not so delightful language included

It's that taboo thing that most people will zone out the second you start to try to talk about.  It's that dark, looming shadow in the back of your head that comes out when you're at your lowest.  Death is something that we all will come to face but that no one likes to talk about.  I have to think about it.  A lot of my friends do.  We're terminal.  Despite all the other issues we may face, we will either die from our cancer, an accident, or if we're lucky from old age.

No what sucks?  I got cancer in my twenties, I never got life insurance then.  I was waiting for my 5 year mark of no cancer to try for something after having cancer, but at 4.5 years my cancer came back.  Now I'm terminal.  Does that mean I'll die tomorrow?  Hopefully not.  Does it mean I'll die in three years, who knows?  But I'm living with cancer.  I'm living with a ticking time bomb that no one has the defuse code for.  As far as insurance companies care, I'm already dead, they don't want to touch me.

So I have a gofundme going, I thought if I could get our bills down.  If I could take that away from the cancer, I would not feel like such an ass when it comes my time.  Cancer expenses aren't just chemo and the pills to help you cope with it.  Cancer is gas money to the hospital for all appointments and scans.  Cancer is daycare so you don't have kids in tow while the oncologist explains that the cancer is showing an "evolution".  Cancer is eating away all your savings so that your family is left with nothing afterwards.  Cancer is not having the energy to do things normal young adults can do on their own.  Cancer is not being able to make food some days and needing to rely on frozen dinners or take out.  Cancer is asking so many people for help that all pride is gone.  Cancer is bawling in a private place because you're tired of being tired, sore, and feeling like a burden.  So yeah...  I started the gofundme to try to make some of that horrible feeling go away.  Unfortunately it's not doing so great.  It was at first, but it's died down now.  It made one month less horrible, so I'm thankful for that.

Cancer is also sitting on the couch watching a show with the Grim Reaper eating popcorn as they watch the cells in your body trying to take over.

I will die.  Will I go to Heaven?  Maybe the afterlife is a bit different.  I believe Albert Einstein was the one that theorized that energy cannot truly die, it continues, it spreads out into the world and space.  The human brain is energy, all those electrical connections that make up you and your thoughts.  Perhaps that is your soul, the energy that makes up your brain, so when your body is returning to the soil, your energy, your soul, leaves your brain and drifts off.  Do you retain your consciousness?  Who knows.

This post is also inspired by getting too many emails and messages that people have died that I know.  Some from cancer, some chose their day to die and had their assisted deaths, some committed suicide, and some from horrible accidents or other health issues.  Either way, I'm surrounded by death.  It's around me and within me.  This is what I live with every day.  Don't take this as a sign that I'll be looking to make an end, cancer chose the wrong bitch to fuck with.  I like life.  I am married to my soulmate, I have great kids that are also assholes at times but I love them more than I can explain, I like cheesecake and rum too much to give them up forever like that.

I'm not sure how to end this post.  I'm not sure where I'm going from here, but I've put my thoughts out there, into the interwebs.  Farewell words I've typed, perhaps you will do some good out there.