Thursday, 15 February 2018

33 months

Today is a hard day.  I have come to the conclusion that February 15th and I do not have a healthy relationship.  February 15th is the date for both of my mastectomies, but today is not difficult because of that.  Today is harder than some days because this is 33 months from the time we discovered my cancer had metastasized.  In the US studies, the average life span for stage 4 breast cancer patients is 33 months.  We do not have any proper statistics, that I can find, that are for Canadians.  And even if we look fully at the US studies, they do not include people like me, they are only for people diagnosed stage 4 at the start of their breast cancer diagnosis.

I find today hard because there was a chance I would not make it here.  Statistics said I might not see my son turn 3 years old.  They said that I might not see my daughter off to her first day of school.  I definitely would not see my eldest go to jr high, if this had been true statistics for my situation.  Even though these numbers that we are told after diagnosis are from the past, they still hit me hard.  I know many that have lived passed the 33 month mark, but I know a lot that have not even made 12 months.  Some did not even make 6 months.

There are a lot of emotions at play today.  I am happy to be here, I am tired because of the chemotherapy, I am pissed at all the snake oil salesmen and misinformation pushers that pounce on unsuspecting cancer patients, I am grateful for my chemo that has helped me be here today, I am thankful for my medical team, I am sad for all my friends that are not here, today.

I will have a lot of ups and downs today.  I just need to see the day through, but now I wonder if I am on borrowed time.

Sunday, 2 April 2017

YACC Saved a Life Yesterday

When you think of a support group for young adults with cancer, you probably just envision a bunch of people in a circle talking about treatments and life expectancy.  I'll tell you now that that is not how any retreat or conference works, it is so much more than merely that.  It helps create friendships and connections that are so different from your typical ones.  There's something deeper in the relationships that you make while attending a YACC event.  And, yesterday that helped save someone's life.

I'm not going to say anything specific because of several reasons, but I think people need to understand both that it's okay to have dark feelings, and to also know there's a couple ideas that you can do to help friends that are away.

Yesterday hubby and I had taken all the children to grandparents' houses for the night (whooo! We get to sleep in!), and I received a message asking if I was not busy by any chance.  A friend was trying to reach me to let me know our mutual YACC friend had delved into a dark place and refused to look for help as much as they had begged them to call - they wanted to end it all, they didn't see any point in living.  I told my husband I had to go call the friend, he knew who they were, soon I was on the phone with them.  They didn't want to deal with the daily pain anymore, they were dealing with so much and it was weighing down their soul.  I didn't know how to deal with this, I'm not a trained crisis counselor, I'm just their friend, thousands and thousands of kilometers from them.  I had a heartbreaking moment of a thought of finding out that this friend was gone, like so many others that we had lost recently, and I said the only words I could think of.  "I'm selfish, I want to keep you here.  It's okay to have bad thoughts, it's okay to be tired of the pain, but I don't want to lose you.  Please call the crisis line!  Promise me you'll call them when we hang up.  I'm selfish and I want you here."  They agreed and promised they would.

When I spoke to the first friend that had messaged me about the our friend, it didn't consol them at all that they had promised.  They had told them they would call crisis line.  Our next thought was who could get to them so they had someone physically with them.  We think of two people, one that wasn't close enough to physically go there but that they are close to so a phone call would probably go a long way, and another that could probably be there in half an hour, someone that is very loving and that could give support in-person.  We contact the latter to get that ball rolling, the sooner someone is with the "darkened" YACCer, the better.  When contacting the first person mentioned, they are amazingly near the YACCer even though they're not normally within driving distance.  They would first call though, see if that can help in any way.  When they have no response to the call, my heart sunk, and they said they were turning around immediately to go to the YACCer's house.

Still terrified that something would happen before the other two arrived, I texted a connection to the YACC office.  They offered to call and talk with the YACCer.  Right now, keeping them busy and in contact until someone showed up in person was the best we could do.  And, the more people contacting them, the more they knew we loved them.

Things went amazingly well after that.  The friend from the office was on the phone with them until one person arrived, and had found out the YACCer did finally contact the crisis line.  They aren't normally this darkened, but it happened, and they were at risk of spiraling downward to the point of no return.  The second friend showed up and this gave the first arriving on the ability to be able to leave to reach work on time, but not before letting the YACCer know that they would be putting a lot more effort into making it out their way from now on.  That awesome friend that had arrived stayed with them for a long time.  The YACCer finally was able to eat and knew the crisis line was sending a counselor to see them soon.

Many will read this and think, that wasn't YACC, why would you say that YACC saved someone's life?  Well, everyone mentioned, other than the one at the office, was a person that had or has cancer and the only reason we know each other, the only reason we had each other's phone numbers and ability to message each other was because we met through YACC.  If we had not known each other, if we didn't all know that YACCer, they might not have seen today.  The world would be that much darker for losing their light in such a tragic way.  Our friend is alive and knows they are loved.  That is all thanks to the connection YACC has given us.  So, yes, I say, "YACC saved a life, yesterday."

Wednesday, 29 March 2017

Brave Day

Today is YACC's Brave Day.  Today is a day to talk about everything YACC is about and why Shave For the Brave is so important.  I'm going to write something here to help get my feelings across.

There's a lot that can go wrong in pregnancy, even when you're 40 weeks along.  There's a lot that still has a mother on edge other than feeling like a mobile bowling ball.  One thing I was not expecting was the surprise I got that morning.  I was slowly getting up to get my daughter ready for daycare. I didn't have to rush because my son had stayed the night at my father's so I didn't need to run out the door to get him to school.  I started for her room and did something I had been doing a lot lately: rub the sore spot on my chest.  This time I froze.  There was a bump on my bone.  Not a small dot, this felt about the size of a tangerine cut in half.  Survival mode kicked in as I heard my daughter calling me, I got her dressed and set up some breakfast for her.  After I had her distracted I frantically grabbed the pregnancy paperwork for the hospital and savagely dialed the cell phone at the top, it was my GP's (general practitioner) number in case I went into labour.  I knew he was going away on vacation so I didn't know what to expect.  Doing my best to not cry and blubber on the phone I tell him there's a lump coming out of my sternum, I don't know what to do.  He says he'll call right back, he's calling the local emergency centre to see about getting me in for some form of scan right away.  I took that moment to break down. My daughter was blissfully munching and watching a movie, I hid out of sight and fell apart - I know what this is, I'm scared, I know the only thing this can be, there's no way around it - the cancer came back.

This was in May, in September it would have been five years since my breast cancer diagnosis.  I would be called "cured" by a lot of standards, then.  I would have been "cancer-free".  Would have.  Back to that day, May 15th:

My doctor was actually pretty quick getting back to me, he told me to head in to the emergency centre, he had talked it out with the head of radiology at that location and had figured out that an ultrasound would give us a good idea of what what happening.  I agreed and hung up.  I called my husband's ship to tell him what was going on, one problem, no one has seen him and he's not answering pipes. Enter panicked Julie.  I remembered his ship that he had been posted to had returned early so I took a chance and called that ship, luckily he was there.  I don't know how much I said clearly because I couldn't stay calm with talking to him, I was terrified and I couldn't do anything about it.  He told me he was on his way, I hung up.  It was time to kick in survivor mode again, and get my daughter to daycare, faking a smile to everyone I had to face.

When my husband and I got to the centre, they had him wait in the waiting area while they looked at the bone.  They let him come in after and showed him exactly what they had explained to me: the lump wasn't on the bone, it was coming out of the bone.  Of course, everyone is trying to tell us not to call it the "C" word until testing is done, but if it looks like a duck, quacks like a duck, flies like a duck, it's not a freaking unicorn.  The good news was that the baby was still happy and healthy as could be.

We got to spend the long weekend freaking out and trying to stay calm.  We only told two people, I think, what had occurred that morning.  I got a call Tuesday telling me to come in to start induction for baby, he was just too comfy and they wanted to do tests to confirm the lump and see if there were any others.  He was born Wednesday.  Thursday morning I had scans.  Thursday afternoon I had a panic attack after seeing the bone scan on the monitor as it was being done.  IT was back.

Many say to you when they hear you have cancer, "You'll beat it!", "You just need to fight!", "You'll be fine!", and they mean well.  But I was thinking of all the friends I had that had had late stage cancer and didn't live a year after the diagnosis.  Not even a year.  That's not a lot when you look at your newborn in your arms, your toddler playing around, your school aged child working on homework.  The average lifespan after a stage 4 breast cancer diagnosis? 33 months.  My son wouldn't even be 3 years old.

I was lucky in a couple ways, and one of them was that I was already connected with YACC.  I had late stage friends that I could talk to, find out methods of handling treatments, the questions that are best to ask your oncologist, someone I could say my fears to and they would understand completely.  I know it was hard to have the first diagnosis without knowing anyone my age with cancer, but that second time around...  If I didn't have that support...  That panic attack I had in the hospital had me not breathing, I was terrified and in shock.  I don't know how the days would have played out from then on without my YACC friends.  I don't want to think about it.

I'm stable, the cancer isn't in my lungs any longer, the cancer in my bones is staying put but not growing or spreading.  This is a miracle for now and I'll hold onto it.  I get to spend a little longer playing with my kids, hugging my husband, and talking with friends and family.  I am so thankful that I have YACC to fall back on when days are rough.  My husband supports me every second of the day, but even he needs a break and the support that they have provided for him.  YACC helps not just those living with cancer, but their supporters, too.  They help us be connected.  They help us be weak.  They help us be strong.  They help us be brave.

Please help support YACC and Shave For the Brave