The World to Date: A Rant

A lot has been happening over the last few months. The chemo over the summer did not work. We discovered that I had tumours in my brain. I had radiation, another chemo, the pneumonia twice in a row. I keep hoping to go back on chemotherapy and start shrinking the tumours in my lungs, liver, bones, and the mass on my chest wall. However, I keep getting delayed, and I have been delayed, again. My oncologist is nervous of a tremor I have in arm and is going to have my head scanned to see if there is another tumour in my brain. If there's one tumour, it may possibly be treatable, if there's no tumours, great, if there's mulitple tumours, it's likely not treatable and all chemotherapy will be stopped. Treatment will have come to an end. I need to wait on a scan to know if I have the chance to continue treatment or if this is it.

Because it has come to this I have decided to make a huge fucking rant post. My sister said to me last weekend she rarely hears me complain, well, I'm about to.

I'm frustrated that Mike and I always seem to get the shaft and have to work triple hard just to get what others are given. Things like the wish vacation that we were sent on last January. Many were so happy for us and we were so excited. The entire week was stressful and upsetting for Mike and I. Yes, we can easily say that the kids had a blast, they did not have to deal with all the upsets that we had to constantly argue about, the problems that kept arising over and over again. The most relaxing time of the entire vacation for Mike and I was the flight from Turks and Caicos to Montreal.  Everything else was a aggravated, disappointing mess. I was in tears there more than once. Not a worry free vacation at all.

And it's not just that. Constantly we go away and we end up with the hotel room that is falling apart. Our plans are destroyed and given no compensation or remorse from the parties involved. Oh, sometimes Mike and I can complain to the point of a slight rectification, but only if we're willing to fight, and it's always a fight.

I might be finding out tomorrow that I'm at the end of the line. I might not get to ever try to go on a real worry free vacation with my family now. I might be preparing for the "lasts": the last Christmas, the last birthday, the last summer vacation, if I haven't already passed that line. And I'm angry. I don't want it to be the end of the line. I don't want this to be all that is available, but it seems to be the way our lives go. Yes, I probably sound like I'm whining, but right now I don't fucking care.

I know, too, that I have had small fortunes sent my way. I have several friendships that have developed due to cancer that I would not give up for the world. Whether we speak only on Facebook or in person, I cherish these friends, dearly.

Honestly, I want to type more. I'll have to do a continuation. I'm too sore and the painkillers are not kicking in all the way yet. But for now you have my bitching notes. And I'm going to remind people that I don't want to respond to 500 "any news" messages, tomorrow. I post stuff when I'm ready

Treatment update August 2019 - Mealtrain

Hey interwebs

I ended up at emergency because my oncology nurse was nervous of my breathing and increased cough. As far as they can tell after six hours of testing and saline solution, I'm physically and mentally exhausted.

I'm not overly surprised. FEC is an aggressive chemo treatment. It's used with a lot of early stage breast cancer because it is aggressive, and now that I'm late stage, my body is already weakened. I was getting spoiled with treatments that gave me a higher quality of life so I did not rest enough, I guess. And, well, I'm having a lot of noncancer related issues that are taking their toll on my mind and body.

One funny thing that happened was just before I was instructed to go to the hospital by my nurse, I had decided to ask for help in creating a new mealtrain account for our family. Mealtrain is great because people near and far can help. It is free but you can apparently pay for more options and fundraise on it as well. I've just opted for the free version that helps with one meal on days that you need it. That's the great thing, you just open the days you can really use the help. Friends can either deliver food, order food for you to pick up or have delivered, or send gift cards to cover the meal. It's one less thing for me to have on my mind and lets me sleep more. As added security/privacy, you cannot just look up the mealtrain for someone, you need to be invited. I like that, you're not going to get strangers messing with the account and you can make sure that only those that want to sign up do. I'm fortunate that I've had friends local and away signing up to help.

I'm hoping my energy boosts up and I can maybe remove a few of the days I have selected, but for now I'm grateful that in a time of need, I have people helping me. Thank you!

PS:
If you are someone that would like to be added to the mealtrain for my family, please contact me. I'm not placing the link on here

Thanksgiving post - a little delayed

Thanksgiving had been last Monday, here in Canada. I was filled with turkey on Sunday and we rested most of the actual holiday. I was messaging someone that I realized might not have seen my posts about cancer progression and from that conversation came something I thought would be a good blog post.

I hate cancer. It will one day take me from all I love, it has taken loved ones from my life and from the lives of others.  For now, I am here, so I can say one of the oddest things to ever come from me: there are ways I am grateful for my cancer. I'm not happy I have it, I'm not thrilled that it is trying to spread, but if I had never had cancer there's a few things I wouldn't know or have.

Because of my cancer I have many friends across this nation and the world that I would likely have never even known existed otherwise. I have had the rare and wonderful opportunity to meet others with various cancers and share with them our laments and our joys. I have several friends that do not have cancer but because of the way it helped connect us, we now have a friendship that I could not of dreamed of finding.

I know how much my husband values me. There's always tests in a relationship, there's stressful times and many tribulations. Despite all the horrors we've faced with cancer, my husband cares for me, his love has been unwavering. He shows me daily that he loves and cherishes me.

I've seen the kindness of strangers. I have been able to witness and experience the love given by someone that does not know more than your name and maybe a brief account of your affliction. Love coming from someone that has no connection going in is beautiful and becoming more unique. Although in my mind, if someone needs and you have or can help then you do, it is not the norm. That is something that I have slowly come to realize, but seeing that there are still some out there that feel the same way warms my soul.

I know that I am capable of being stronger in spirit than I would have thought. There have been times that I thought of the next treatment and my shoulders would drop, my head would hang heavy, and my breath would be no more than a resound sigh. There were days that I wanted to say "no more", just stop everything because the feeling I would have to endure was abhorrent at best. But I did take that treatment. I did bare the effects and make it through to the better days. Part of it was for me, but part of it was for my family and friends. I'm not saying it to place any weight on their shoulders, I'm saying it because I know if our roles were reversed and I was watching them deal with this, I would hope that they could find the strength to hold on as long as they could, to stay in my life. I am not ashamed to admit that I selfishly want my friends here to talk to. I have lost so many to this date that I do not want to hear the words "they're gone" one more time. I do not want them to hear that I am gone, either.

I will also admit that some days I do wonder if I am becoming more of a burden with all that has happened since the car collision in 2008. I have become limited in physical capability due to the MVA, something that has made dealing with cancer worse. If I was a fully functioning adult there are some things that would be easier with this cancer life. I still continue, however. I do what I can and try to accept what I cannot do.

I hate cancer, I would not wish it on anyone. I cannot deny the good that this mass of unruly cells has brought into my life, though. I am grateful for the lighter side of this experience, but would still like it if one day I was told the cancer was irradiated or would be forever manageable from that day forth.

Chemo Shower - Brought to you by midnight wine

Last night Mike and I had some merlot and late night nachos.  The following idea then came to me before we headed for bed: chemo showers.

When people are going through a huge change, there's sometimes a party to help the person/people out.  People bring gifts that will assist with the change.  Baby showers, you bring diapers, clothes, formula, creams, toys, or baby furniture items to help the parents.  Wedding showers you give small appliances, gift cards for renovations, silverware, dishes, china, or whatever the couple has asked for help with.  So what about when you're about to not be as functional because of chemotherapy treatment?

You have found out you will be on chemo.  You get a couple of your best friends together and pick a date to have a chemo shower, either before the first one or after you have the first treatment for a better idea of how it will affect you.  Either have the party in house, at a friend's, or your favourite restaurant.  Decorate with things that make you happy: your favourite colours, your favourite quotes, your happiest photos, pictures of kittens, whatever your desire.  People bring gift cards for food, coffee/tea, takeout restaurants, or vouchers for cleaning, childcare, or drives to the hospital/grocery store, or self pampering things that you might not be able to afford like a massage (even just a foot/hand/scalp massage), gel nails, gift card to your favourite store to get movies/games, or a pricey restaurant that you adore their desserts.  The theme is always support and joy.  This is a great time to say exactly what you will need help with.  Make a list of needs and post it on the wall (make it fun with a poster board and make it a "pin the chemo bag on the thing they will help with" game), let people sign up for what they can do.  Susan can help watch the kids for the January 4th chemo treatment.  Jack can come mow your lawn on May 16th.  Paul will take the kids overnight on October 12th so you can have a night to yourself when you are most likely to feel like going out for a night.  Janice will drive you to your treatment on February 27th.  Chris will take you to the movies on August 19th for a fun afternoon.  Think about not only your treatment days, but the days when you are feeling a bit normal, you need to have a life and have fun.

So that's my thought.  Brought to you by fajita chicken bacon nachos and merlot.  #Omnomnom

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?

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

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

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.

Shaving and Spring Fair for YACC

What a whirl-wind this weekend was.  We had the Spring Fair for YACC and the Shave for the Brave.  My son and several others shaved their hair for Young Adult Cancer Canada.  I'm happy to say that the group raised over $2,000 together.  We had the Spring Fair to raise funds for social events at the YACC Survivor Conference this June.  The total for that has been $600 raised.  I cannot thank everyone that helped me and stepped up, asking if there was anything they could do.  I admit I'm extremely sore after putting on the fair and shave but I'll gladly take being in pain for several days if it means fundraising for YACC and getting the word out that the organization exists.

There's still time to donate to either event.  If you want it to go towards the Shave for the Brave please donate using THIS LINK, it's for Archer's Team.  If you want to host your own Shave, please check out the link in the first paragraph.

If you'd like to donate towards the social events, either send me a message or contact YACC and let them know that's what you want the funds to go towards.  There's a link for them in the first paragraph, too.

I hope that we get to do this form of fundraiser again, the vendors said they had fun, many were happy to hear about an organization like YACC, and it was great to see the smiles and hear the laughter of people working towards something they believed in.  Take care guys. xoxo

Bit More Explaination

I started a GoFundMe after saying "no" to it for a while.  I want to get out why I was saying "no" at first.  For one, a friend tried once before for me when the cancer came back and it was a flop.  This seems to be the norm for any personal campaigns for my family.  It's just the way it works.  Maybe it's because we're used to working for everything.  I was working in elementary school as a newspaper carrier, I had a pet sitting business, I made crafts.  One I could fully work, I had a job.  Then another job, and sometimes more.  I did manual labour, tech work, I did it all because I like earning my money.  I'm limited now.  Very limited.  I've tried to do more but physically cannot.  I need to accept that.

Now that I'm back on chemo, I tire quicker and quicker each dose.  I have three awesome kids that can be tyrants because they're all under 9 years old, they're kids, they act like kids.  The average mother will agree that the most agreeable child can become a tempest of doom in a heart beat.  Kids are growing, they get frustrated, they are learning how to express themselves, it does not always mean they found the proper way to do that yet.

My husband had started his career before we met and long before we married.  We had lots of plans and we could do them all on our own until someone caused a car collision and I was permanently injured.  Now I can't do a lot of the stuff I once could.  Then cancer compounded onto that.  This month alone, I have eleven (11) doctor's appointments and I'll be having a bone scan.  Bone scans take 4-6 hours depending on a plethora of variables.  I need child care for two kids for all of those appointments, I need gas to travel the average of 30km to the appointments (one way), I need to pay for parking (but I do get it half price at least), I have to pay for my prescriptions including chemo, thank heavens my husband's plan covers them.  (Before anyone asks I have to pay for my chemo because it's dispensed at a pharmacy outside of the hospital).

I'm the one that does most of the cooking.  Why?  My dad taught me how to cook and bake and I like doing it.  My husband does try to help when he can, he really loves helping with chocolate chip cookies, but I'm the cook in the family, that's our life.  So I get tired and fall asleep because my body can't take it any longer, what happens then?  If there's leftovers, they're used, if not it's one of two things: something my hubby is comfortable making, or take out.  Three meals a day and snacks can add up on my tired body.  We have been doing our best to make this strain less on me, but it still acts up often - who knew you had to eat every day several times! (HA!)

I have days I can't walk far because of pain.  I have days I can't move without feeling like parts will shatter off my body.  I have stabbing pain from the cancer sometimes.  All this stuff is adding up.  This is life with disabilities and cancer.  Some are REALLY good a hiding the issues they face and, honestly, we generally pride ourselves in appearing "normal".  I guess it's a case of masks.  Today my mask will not show my back pain is already a 6 on the scale of 1 to 10.  Today my mask will not show that my depression is kicking in.  Today my mask will not show the tears I cried because I feel like I'm failing.

This is definitely now a rant...  So this is part of the why I finally said okay to the campaign: It doesn't help my family if I'm prideful.  I cannot do what I used to.  I need help, I need to ask.  I just hope that people will step up like they've offered before, and if nothing else SHARE the campaign.

To find the GoFundMe that I started CLICK HERE

I'm really so tired that I'm not even proof reading this before posting.  My youngest is sick and I got to come back to finish this after I picked him up from daycare, got his fever down, fed him, and got him to have a nap.  I'm tired.  I'm going to have a nap and worry about supper after.  This is my day

Happy Bday Hubby

This post may seem like a "#humblebrag", but I'm starting to think that it's something that more people need to be aware of.

My hubby is having his bday soon.  He's been by my side through more crap than most couples need to deal with in the first few years of their marriage.  I wanted to put out into the interwebs what kind of man he is.

Before my husband I had heard of people saying they "married their best friend" and I didn't fully know how that felt.  I had been married before and it was not a good situation.  It took me a long time to realize what that relationship was.  This marriage that I'm in now is completely different.  I can say that I married my bestfriend.  A part of our relationship is so similar to what I have with those that I have long called my bestfriends.  We can laugh, cry, complain, be smart-assed, or just hang out doing absolutely nothing, and be content together.  We love to play video games together, we can read books on the couch together and not say a word, we can watch movies together because we have the same tastes for the most part.  No, we're not exactly alike, if one of us wants to do something that other doesn't, we don't force it on the other.  We just do our own thing at that point, it's not a big deal.

Our relationship isn't just a PG life, we are compatible lovers.  It's taboo to say stuff like that in our society but taboos can suck it - we're married, we love each other, we have sex.  That should be painfully evident since we have three kids.  Throughout our entire relationship, we've been able to enjoy our play-time together.  We can both say that we have fun with sex and neither of us ever pressures the other into having sex - something I didn't understand was possible for a long time. 

Hubby is a good father, too.  He takes care of our kids, he's not just a couch potato, even though he's worked all day.  He plays with the kids, helps with discipline, teaches the kids, hugs them, and kisses them.  He is always there when they need him, but he doesn't do everything so they can learn some independence.  I know that no matter what, he is a responsible parent, a gentle hand but firm teacher.

This is our relationship.  We're able to be by ourselves and be happy.  We're able to love each and not feel forced into it.  We're able to be apart and not fear what the other is doing, we miss each other a lot, but we're not able to feel that the other is up to something.  Here's the part many do not understand about us - we don't fight.  We don't.  We've never yelled at each other.  We don't argue.  We've disagreed before but it was a conversation, not an argument.  You may think I'm lying, but I'm not.

I think that there's a lot of compromise in relationships, and that's okay to an extent.  I found I compromised a lot and it lead to bad relationships.  I finally said that I would not change me for someone and found someone that never once asked me to.  I found someone that I didn't need to wear a mask with, someone that doesn't need me to bend to their will to keep them happy.  I've been in bad relationships and learned over a long time that I was dealing with issues because of compromising myself for my partner.  Do I think any of my bad relationships would have lasted after I was permanently injured from the car collision?  No.  Do I think any of my bad relationships would have lasted after my cancer diagnoses?  Hell no.  Not all relationships can take that kind of stress, especially with kids in the mix.  I'm extremely lucky, and I know it.  My hubby loves me no matter how many scars I have, no matter what parts of me get removed or rebuilt to not-the-same reconstruction, no matter if I'm really sick or able to function for the day.

What I'm trying to say, interwebs, is that even though I went through the bad relationships, I now finally understand what a relationship with a lover, partner, spouse is supposed to be.  Our relationship isn't 50/50, we're both very present in it.  I know that if he has a problem, he will talk to me.  He knows that if I have a problem, I will talk to him.  I know that every night that we get to go to bed together we'll fall asleep cuddled, with our last words to each other being, "Love you, goodnight sexy/handsome".  My greatest wish is for everyone to one day know this kind of relationship.

Happy bday, handsome.  Love every moment with you xoxo

Chloe Comic August 2017: Dealing with Emotions

Dealing with Emotions

Chloe Comic June 2017 Someone Should Do Something

Someone Should Do Something

Chloe Comic June 2017

Conference Emotional Rollercoaster

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."

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

Survivor Guilt

Ever watch a movie or read a book about an immortal or long-lifed creature?  One without a delusional god-complex?  They at some point tell the heartache of being blessed with living and watching those not like them dying around them.  The curse of immortality.  It's not just for the eternal, for those of us that still have an end-date looming over our mortality, it's survivor's guilt.

Survivor's guilt comes at you strongest after someone you cared about, related to, loved, and admired passes away, especially if it is sudden.  Salt in the wound is if you're a ticking time bomb, yourself.  An unfortunate catch to getting to know other people living with cancer is that you are all on borrowed time.  You don't know how much any of you have, of course doctors can speculate, percentages are given, but no one truly knows the amount of seconds you will get to enjoy in this life.

Today's post is brought to you by seeing that another friend has passed.  She was a kind, wonderous woman, a devoted mother, and as many would say, take too soon, that she was too young.  I've seen many, many friends pass over the last years, this last year especially.  We're all terminal.  But, I'm still here.  My scans have been stable for some time now.  The chemotherapy was really effective against my tumours.  Their cancer got to the point where the treatments, no matter which they tried, were now useless.  Some tried alternative options towards the end, some decided to not try delaying it any longer, some opted for even ending things before their body shut itself down.  No matter what they chose, it was their choice.  A choice no one should ever have to make.  I don't know what I'll do when I get to that point.  I hate thinking about it.  I also hate knowing that my friends' children won't have their parent by their side, any longer.  They'll miss the hugs, the kisses, the fights, the getaways, the trips, the advice...  Some will still have some memories.  Some will have things to help them along, cards, letters, videos, books, pictures, but they won't have the person.

So why do I get to be here and watch my friends go?  Some say that I'm so lucky.  How is it luck?  You get to feel the heart break every time you are notified that someone passed.  You feel death's hand a little tighter around your neck.  You watch your children and know that could be them soon, one parent less.

You to take comfort in that you are still here, but the weight on your chest is real.  The darkness in your mind is there.  You feel guilty because you are on this side of the grass and all you can do is try to honour them by living.  Try to live so that you can give reason for being the "lucky one".

When is it too much?

I guess it's something that I have asked many times.  When is enough, enough?  When should I just say, okay, I need to stop?  When should I tell myself to cut the stress off?  When should I give up?

It's not always about something big and important.  Small things should be easy to say "That's it" to but that's not always the way.  I had a couple instances where I knew right away that the line was crossed.  I acted accordingly.  I find myself, however, constantly turning back to this question at some point in the year. 

To be a bit morbid on the subject, this is something that any advanced cancer patient has to face.  When will there be no more options?  What will I do then?  Will I choose to end things on my terms or to let nature seize me?  What is too much when it comes to treatment side effects?  When is the quality of life diminished to the point of not being life any longer?  It's something no one should have to face and decide on.  But some of us do.

On a less deadly topic, sometimes you do your best but the effects are toxic and you need to just walk away.  It can be a relationship, a job, a career, a hobby, a volunteer event, or a situation that you turned around and realized you fell into it long ago.  In those instances it is best for your mental sanity to try to stop.  That's when you need to look out for your mental well-being.  The stress that something, even out of good intentions, has turned toxic and it can do a lot to you.  Stress can effect a lot of your body and you don't generally realize it until you get a chance to detox.  If you step away from the cause, sometimes just as your mind has decided that you finally need to stop, that can start the healing process. 

Once you have accepted the path you need to take, even if it means burning bridges, or temporarily cutting ties, you might find the air less dense or less thin as it had been.  Your shoulders may stop slumping.  Your heart might feel lighter.  It'll still take time to fully recover, but you might be able to feel that you did what was best for you and your well-being.  Even if it isn't the best for all parties involved.

A Smile

I don't know if it is because of my post yesterday but there started being some activity on our Meal Train page yesterday.  If you don't know what Meal Train is, it's a site that you can set up and people pick a day to make a meal for a person/family.  My son's teacher started one for us last year after several parents had asked if there was any way they could help.  It's been a great relief for us, it's anything from home cooked meals, gift cards so we can enjoy a night out with the family, or take out brought straight to us.  I cannot be more grateful for their kindness and open hearts.  And so I say thank you to those of you that take time out of your day to think of someone else, those that understand that living with cancer is a trial to begin with and adding physical disabilities just compounds that, those that wish to bring a ray of light to those that feel stuck in the dark pit of despair.

Update for August 2016

This summer has been nice.  I'm on a chemo break so, unlike last year, I get to do more activities with the kids.  My hubby and I have been trying to take them to more playgrounds, to get them outside in the nice weather.  We were gifted some passes for a local park called Upper Clements Park from a good friend so we took the two oldest up for a day of rides and adventures.  They had a blast, my back took a beating but it's par for the course these days.

A friend had started up a GoFundMe page for our family, but it's not really taken off.  I'm not a cute little kid in need, I'm not totally bed ridden yet, so I don't get a lot of funding coming my way.  A lot of people don't think I'm sick when they see me.  My hair is coming back (thanks to a lovely lady, it's blue and purple currently), I'm looking healthier because I've gone down almost 4 pants sizes, I'm not displaying the tired, sunken, daunted appearance that most associate with terminal cancer.  In fact, at first I didn't want to go near fundraising for two reasons:

1. I'm stubborn.  I've worked for what I've wanted since I can remember.  I would pet-sit, had a paper route, made/sold crafts, got a job in the school cafeterias at lunch, had an after school job, frig, I always had a job, I was always earning my keep, I had to go on EI once and hated it.  Now, I need help because I can't just go out and get a job.  I can't seem to sell my art because it's so easy for cheap crap and cheap crap artists to flood the market that quality handmade items are deemed too expensive. This leaves me with basically asking for help because my husband's salary is taking a hit with all the extras that have popped up because of cancer.

2. This is going to just seem pessimistic to many of you, but it really hasn't given me many signs to the contrary.  People don't give a shit when you don't look like death with cancer.  They don't understand "living with cancer", the mass populace still thinks cancer is curable in all forms if caught early.  Stage four breast cancer is not understood, breast cancer is over used to fatten corporations' pocketbooks with that fucking pink ribbon/save the tatas/save second base/etc bullshit.  Once you get passed that, my other thought along the same line, not enough people really want to help.  There's been so many con-artists that they just think people want free money.

Now I'll tell you why I agreed to fundraising.

I had hoped, hoped and hoped, I was wrong.  I hoped that people would support me as much as others that are/were in our community.  I saw friends helping raise over $10,000 for people so they could go on family vacations, pay off cancer bills, just not have to worry about money.  And those people weren't even terminal!  So I hoped we would be able to have the same happen to us.  I mean, I have hundreds of friends out there, lots of people that say they want to help out, so why not?  I could take the kids to Disneyland or Disneyworld, my hubby and I could have a special night to ourselves without incurring more debt, we could pay down the bills so that his salary was more than capable of handling the surprises and fumbles along the way...  I actually got excited.  Then I saw exactly what I had originally thought come to light.  People say they'll come but they don't.  People say they'll support, but they won't.  I can't expect the same people that actually commit and keep their word to support me and my family.  That's a burden I don't want to place on them.

Not everything is dismal, however.  Like I said, we were able to go to Upper Clements Park and another friend let us know about a great place in PEI that has something available for terminally ill people and their families.  We'll probably be digging the hole deeper, but we'll be having memories made for the kids.  Things they can look back on and be fond of.  I'll find solace in that.