Wanted: Worry Free VayKay

I need a vacation. I mean a real one. One where my hubby and I aren't frustrated or arguing with staff of the resort. One where things go smoothly. I would love it to be a location that we could take the kids with us but still have the opportunity to have couple time daily. A place to have drinks on a beach or by a pool. A place to swim and laze in the sun or dance in the rain. A place that is quiet at some places for relaxing and that is bouncing at the places you want to party.

My head is aching thinking about this.

I need a vacation where my only concern is getting the children to listen and go to bed before 9pm. Where our only fear is the kids waking at 6am. Where our only problem is having too many places to choose from to eat at meal time. A vacation where staff don't ignore us, where they are happy to talk with us and make sure we're pleased with everything. I need some place that will make sure we're always happy. I need a place that is willing to bend over backwards to ensure that we have anything and everything we need, no bickering with us on the issues when we present them, just fix the issues. Or better yet, don't let the issues happen.

I need a place that when we get back I won't have to keep repeating the response "The kids loved it" when people ask how it was. For the real response is that the time was heartbreaking and not relaxing. We made the best of it. We tried to put on a happy face for the kids. But that's not the responses the one asking wants. The kids were content and at least we have that, so that is what they are told.

It's also required that the timing work with my treatments... I am getting behind on those enough already with having pneumonia twice in 6 months. So this is getting more difficult to think of a way this could ever work. Money is too tight for now, but we'll try to save. Maybe some miracle will happen and we can go sooner. Some major sale happens, perhaps. Until then, save, save, save. It's better to set aside five dollars and slowly make it than to not put anything aside at all.

But I really need a vacation.

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

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

Hard Lessons Learned

One of the toughest things I've had to deal with in life, even before cancer, was discovering the true self of a friend.  I have lost those that I considered to be good people and good friends once their facade dissipated, revealing an ugly side.  A side that you did not conceive that person being capable of.  And, as I've found in many situations, it is not until you step back and re-evaluate the friendship that you find the truth of the matter: they were never hiding their arrogance, pretentiousness, or vaingloriousness, you just favoured their good traits, turning a blind eye to their malevolence.

On Facebook, many people friend anyone that they know, or think they know.  This has some with thousands of "friends".  Others only friend the people they truly wish to keep in contact with, they tend to only have a couple dozen to a couple hundred at most.  On Facebook, blocking people has seemed to turn away from keeping unwanted eyes away from your daily life, to the act of if someone does not agree with everything you think is right then you block them.

For some, it is no skin off their back to have the delete/block button at the ready.  They have the power to take someone out of their life in an instant.  The internet is full of safeguards, if you make a mistake or simply change your mind you can "undo" your act.  They can leave with a comment of "I wish you would die" or "You deserve to die (or have cancer)" and think they were fully in the right to give you that sentence.  At times I wonder if they simply belittle the act of losing someone to death?  They are gone.  You may have them in your mind, think of them often, and reflect on good times, but that person is no longer there for those that do love them.  Are we becoming a generation that thinks it is okay to be so malevolent?

No, as a generation I cannot see that being the norm.  Many people still care for others, even strangers, and many try to be good people.  The fact is that some still believe the world revolves around them because they cannot see passed their eyes.  They do not understand that the world owes them nothing, but they owe the world to be the best human they can be.

I came to the conclusion today after having someone I've known for 16 years turn from a friend to a fiend, attacking one of my friends and wishing them death, that we need to accept that we cannot always predict what a person truly thinks of you.  You may think of them as good, but they may only be using you when you are useful to their endeavours.  Leaving me to come up with this epiphany:

"If someone blocks you because of their pretentiousness, did you lose a friend or weed out an antagonist? Either way, you discover they were not who you thought they were and you are better off without them."

The only one that lost the friendship was I, it was my mistake in seeing only the good and not acknowledging the enmity.

A Breast of Value

I want to ask of all of you a question.  Women: what are your breasts worth to you?  Men (so you can put it a little better into context): what is your penis worth to you?  Yes, it's not quite the same but the value of our sexual organs comes rather high when you have to think about not having them, especially when you are still young or young at heart.

A breast for a woman is more than a lump of flesh and nerves.  It's more than something to help with pleasure with her partner.  It's not just a method of feeding her young.  And I assure you it is a part of how she sees herself when she walks passed a mirror.

Losing my hair to chemo was a physical blow to my self esteem.  Yes, it's just hair, but I had long hair since I was in elementary.  It was part of my identifiers.  Julie was that girl with the really long hair that had the natural silver streak down the front.  Then it was gone.  Looking in the mirror was a reminder, day in and day out that I had cancer.  I was sick.  I had something trying to kill me inside my body.  "Death by boob" was not going to be on my tombstone so I fought it.  I opted for a mastectomy, to be honest, it turned out to be the best decision after the surgeon saw what the tumour was like.  But they wouldn't let me have reconstruction right away and would not take the other breast at the same time.  Apparently when your tumour is over 5 cm big (that's close to 2" for those that don't know), you are automatically signed up for a lot of radiation, and they don't want to radiate the reconstruction.  Fine...  They tell me to sign up for reconstruction now because it's a 2 year wait.  (OMG? really? well.. okay, that'll give me time to recover).  What they don't tell you is that's a bald-faced lie!  I was put on the waiting list and finally got a hold of the plastic surgeon's secretary 7 months later and she tells me it's going to 2-3 years, from that day, AT LEAST to even have a call for my consultation.  Not surgery, JUST a consultation.

Do you know what I see in the mirror?  Me.  Me minus one breast.  Me minus one breast.  Me... Me minus one breast.  Yes, I'm still there, but not all of me.  The deadly mammary has been sliced off, but there's this reminder that I had to go through that.  A reminder that I am still not back to my image.  Hair is growing back, and that looks weird enough to me, but being lopsided is more soul wrenching than the sight of me with short, short hair.

I am only 30.  If I just stand by and say "oh, okay, I'll wait" I could be 34 or 35 easily before I get a consultation with my plastic surgeon!!  I want you to envision yourself without a breast (if your a woman) or your penis (if you're a man) for 3-4 years.  How would you see yourself in the mirror?  How would you feel every time you had that ghost feeling that it was still there and look down to see it gone?  Be honest.  What would that do to your emotional well being?

I can put up the brave front.  I can wear the bloody prostheses so people feel normal around me.  I don't care for them, they're not comforting in the freaking least!  And I don't care if you feel uncomfortable around me because I've been disfigured by my cancer.  You have to deal with it when you see me.  I have to deal with it 24/7...  No breaks from it but in my dreams...  And when you wake up it shatters your soul.  But do not tell me that because the cancer is gone I'm not a priority to be made whole again.

That's right.  Because my cancer seems to be completely vanquished I am considered "delayed".  To the plastic surgeon I'm not important.

What's sad is if I was willing to go to New Brunswick, the next province over, I could most likely get reconstruction done within months.  But I'd have to go there from here on to get all check ups done.  I'd have to make that 3 hour (one way!) journey to get all procedures completed.  (Did I mention I have a back injury and find it hard to drive distances, too..?).  In New Brunswick, cancer survivors come first.  In Nova Scotia, we don't.

I'd love to be proven wrong here.  Please!  By all means, someone find proof that cancer survivors are cared about in the world of plastic surgery.  Show me that when the cancer is out of our bodies that our healing process is important to them!

Then maybe you can explain why people that had their mastectomies in 2007 are just getting their consultations in 2011. >=(

Please join this Facebook group so we can try to make a change!

  Thank you

 

 

Vive La Boob-a-lution!!

Mask Free Zone?

Maybe it was because of stuff that happened when I was growing up, maybe it was just the way I was born, maybe it is neither nature or nurture but a combination of the two, but there is something about me that does not seem to be the norm for everyone.  Many know the concept of people wearing "masks", but generally this is referred to in the same way as "stations" are a part of society.

My mask is not hiding who I am and it's not a front for my true self so much as a barrier.  Time for another analogy!

My heart, my pure self, is a bubble of blown glass.  Highly fragile, dangerously susceptible to being broken, or worse, turned to dust.  Now if it gets crushed, shattered, or turned to dust (as it has on soooo many occasions), it can be repaired and rebuilt, but it won't be the same, it never will be, I never will be.  It gets fired up once more, then carefully and delicately reformed.  So to help keep my heart from being shattered I have a mask set up.  It's a clear material, so you can still see my heart, but cannot touch it so easily.  It's bouncy and stretchy, think of the same stuff bouncy balls consist of.  It's quite jovial, that's one of the defense mechanisms I had installed, I'll explain shortly.  This mask is to protect me more than anything.  It's not to hide behind.

Has anyone fully experienced my heart free of the mask?  Of course!  Did those experiences make me want to be rid of the mask?  Sadly, no...  They're part of the reason I've made the mask thicker as the years have passed.  To quote VG Cats: make it "faster, stronger, less explodie!"

As to the defense mechanisms, why do I need them?  Because people have a tendency to be cruel to one-another, especially if they think you're better at something than they are.  I could draw, I was good at it, I got picked out of the herd of classmates to be ridiculed and tormented.. and man, can kids be torturously evil...  So the main line of defense?  Be quiet... stay quiet, until the second defense can kick in: Get them laughing with you before they start laughing at you.  Yeah, basic, but it's worked now for years.  I want people to think about that.  I'm a grown woman that still knows that if she goes out the door and does not do this she will be bullied and ridiculed.  Feel good now, society?

I've become a good judge of people faking.  And by this I mean all the people that are back stabbing, false friends.  Still a couple slip passed the radar, but I've saved myself a lot of issues (as recounted to me from people that did not believe me when I told them to be careful).

Oh, I forgot about the third defense: don't give a crap.  Now this is the hardest one for me, and I forgot it because at times I just cannot follow it.  But minor things, I can let slide, I can ignore.  Or I can make it look like I don't care long enough until I'm alone and then it will hit me, I'll break down, when I feel safe enough to do so.

I wish I could say that I've found a "mask free zone" outside of my home, but every time I tried before I would have to rebuild my heart and once bitten, twice shy.  I've been bitten so much I swear that I don't have pores in my skin, they're the fang marks I'm left with.

So until I find more mask free zones, or until my heart is forged out of tougher stuff, I will let people passed the barriers only after careful observation and time.