Tuesday 8 December 2015

Are You a Mommy or a Daddy?

Today was my oldest's Christmas Concert at school.  While awaiting the children to be marched onto the stage, one child in the audience turned to me and asked, with pure curiosity: "Are you a Mommy or a Daddy?"

Some may have been offended, put off, or even saddened.  I wasn't.  To the contrary, I would like to applaud the lil guy for having courage to ask what he is truly wondering.  Let's face it, most are accustomed to the idea that moms have a fair amount of hair and only dads have little to none.  Don't mention the breasts as being evidence that I'm female, I've seen plenty of guys that could make a Victoria's Secret model jealous of their cup size.

My reply?  "I'm a Mommy, but I don't have any hair."  That was it.  He turned back to see if there was something interesting happening on stage, yet.  If he had asked why I had no hair, I would have answered that, as well.  He didn't though.  This person next to him probably sounded like a Mom voice, maybe he did think it was a Mom body, but there was something off.  His quick acceptance of my response leads me to believe I'm correct in thinking it was the bald head.

I'm glad the boy asked his question.  We need to encourage kids to ask questions when they think something isn't quite right.  This leads to mis-information or lies being stopped in their tracks.  It can spark converstation.  It brings education.

Take care, young man!  I hope no one squashes your curiosity.

Wednesday 2 December 2015

Positively Negative

A friend spoke of how hard it is to maintain being positive throughout their cancer journey. There's something we all must remember, whether the hiccups in our life are from cancer or something else:

There's no law stating you need to stay positive about it. Get angry, yell, curse, scream, cry, punch a pillow, tear paper, shred paper, do whatever to get the frustration out. Then curl up with whatever helps calm you. Read a book, have a bath, pet your pets, hug your family, make a blanket fort, watch a scary movie, watch a funny movie, kill stuff on your fave video game, or have a nap.

You are allowed to feel upset or down, or both. Permit yourself to be fallible. You may be a super hero to some, but you are a human, you can be negative, you can be frail.

Friday 6 November 2015

An Interesting Weekend

With my anxiety about chemotherapy last Tuesday, I forgot to write about my Halloween weekend.  My husband and I were able to attend Hal-Con in Halifax, the local sci-fi convention.  I pushed my chemo till this week so that I could go without the bone-breaking pain and fear of being around people with a cold.  It was an experience.

The first day was not so good.  There was several times that the volunteer staff supplied by Hal-Con were not on the same page as the staff of the WTCC (World Trade and Convention Centre).  There were also times that a couple of the volunteers didn't quite seem to understand what their job entailed, which led to several confusing and frustrating moments.  I did get to see a couple of the celebrities and attend a couple panels.  There were several attendees that didn't like that I couldn't move overly fast (back pain from my injury makes me slow down), so they barged passed us and took the seats we were heading for.  The worst of day one was when the miss-communication between volunteers and WTCC staff had us trapped inside the con.  Every way we went they told us we could not leave from that exit.  I had a panic attack.  My pain was escalating and the idea of being surrounded by that many people and not being permitted to exit the building quickly attacked my mind.  We did finally find the exit and, quite frankly, ran away.  We went to supper with a gift card that had been kicking around from a friend (finally was in town and able to use it), that was a glorious meal, and when we returned to the hotel room they had vouchers for drinks and a plate of sweets waiting for us.  That helped with our stress level.

Saturday was better in that the Hal-Con staff spoke with the volunteers about the issues and tried their best to nip-it-in-the-bud.  We had a hard time deciding on panels because a lot of the ones that we wanted were at the same time, plus there were several celebs that we still hoped to get autographs and photos with.  I was able to see a friend that I had not seen in years and catch up, had supper with them, and attended the soiree with the celebs.  It was fun, but a lot of people surround the popular guests like moths to a flame.  My back had enough of standing so I was stuck at a table.  One of the guests found me, and sat with us, chatting for the remainder of the event.  That was Lenore Zann.  Many would know her as Rogue from X-Men, the 90's cartoon.  Rogue was one of my favorites (second only to Wolverine), to meet her was a real treat for me.  The fact that she came over and started chatting like we were old mates just reuniting after a long separation was very lovely!  After the soiree we were going to just go to bed but there was a bit of a kerfuffle on our floor so we decided to vacate the hotel.  There were some people going to a local pub just a block away, we headed in that direction.  Long story short, our Halloween was spent with Kris and Paul (from Lost Girl), Kirby (Goku) and his lovely missus, Enver (from Agent Carter), Alaina (Supernatural), Fadi (Captain Canuck producer), Rob (Cyanide & Happiness), and a couple others.  The next day was spent quickly going around to say "Hi" to those that we had been at the pub with the night before and running home to get the kids from the family members that had watched them that weekend for us.

I don't think these guests know what that night (the soiree and the pub) meant to me and my husband.  Our weekend was looking like a write-off.  We were questioning why we even bothered with our passes and not sold them off, as money is a bit hard to come by, now.  The weekend was supposed to be a treat for us.  We had not done anything for our anniversary in quite some time.  Chemo kept me locked up in the house often.  Having disabilities, three kids, and cancer has not made going out that simple.  We were extremely close to selling our tickets, especially after Friday's debacle.  Being able to simply hang out and have a glass of wine with them, chatting about everyday things, that means a lot to me.  This also might have been my last Hal-Con.  Tickets are getting too hard to get.  I need the special passes so that I don't hurt my back and can feel "normal" for the weekend.  By feeling normal, I mean I'm tired of glares and whispers because (other than the lack of hair) I don't "look" disabled.  Plus, I don't know what treatments I might be on by this time next year.

So if someone knows these actors personally, or in case one of them sees this blog: Thank you.  I hope that somehow we cross paths once more.  I wish I could send you updates, like some of you mentioned you'd like to receive, but I don't really have any way to contact most of you.

Soiree Photos
(thanks to my friend Scott)
Lenore Zann and Julie

Kris Holden-Reid, Lenore Zann, Julie, Paul Amos

Pub Night

Kirby Morrow and Julie

Julie and Paul Amos

Enver Gjokaj and Julie

Monday 2 November 2015

Gimmie a Break... Maybe?

Adventures in meta-world continue.  With physical disabilities and three young kids, it makes life interesting.  I'm lucky that my husband is on paternity leave and that he helps with everything at home.  I do still have one issue that he can't help me with: the anxiety before chemo.

Tomorrow will be #6 of this bout of chemotherapy.  That means I might get a break for a couple months if the scans are good.  I still have to go through with it, though.  I need to deal with the feeling that it will make me live with 24/7 for the first couple of weeks.  Ugh, I wish I could make those days just fast-forward.  Instead, my husband will let me cope by taking over then entire household and letting me sleep day and night in our bed.  I'm toxic, anyways, for the first two days so I tend to avoid the kids and people in general.

I am a bit nervous this time because of two reasons: I had a headcold early last week and I attended Hal-Con this past weekend so there's a chance that someone went while sick.  The latter would mean I could be the host of a cold not quite full-blown, yet.  If I get sick while battling the chemotherapy running through my veins I could be hospitalized, or worse, die.  It's not something people like to talk about.  Chemotherapy might be stopping the spread of my tumours but if something else attacks my system, I could not survive.  It's one reason why people should get flu shots and stay home if they are sick.  It has nothing to do with themselves but with how they could infect those with immune deficiencies.  But, that's another rant.

I hope that there's still some readers out there.  I haven't been faithful to writing blogs in years, even my October attempt at posting on my Facebook page a fact-a-day about metastatic breast cancer and breast cancer in general was not-so-daily by mid October.  If not, it is therapeutic to type all this out, anywho.

Tuesday 22 September 2015

Follow Up Article to Shave For The Brave

I was asked to do a follow up article for a local paper about the shave that my son and I did in July for Shave for the Brave.  Click HERE for a link to the article.

Take care guys.  I'll try to find the energy to post up another blog soon! Xoxoxo

Wednesday 19 August 2015

Becoming Portly

I'm awaiting getting my port installed into my veins. This is leaving me with mixed feelings. I'm contented because this will mean they don't make me into a pin cushion at the hospital any longer, but it also makes me feel defeated because it will be a constant reminder that I will always be on treatment.

It's a good thing because they always have issues with getting an iv in. Once it took 13 tries. Ouch. My left arm will be less bruised once I have this port installed.

It's bad because I'll have this reminder 24/7 that I am on treatment. That I'm a cancer patient.

Being stage 4 breast cancer sucks. It really, really sucks. Bloody cancer.

Thursday 30 July 2015

Gotta brush that hair off your shoulder...

It's official.  I'm seeing hair (albeit stubby lil hairs since having shaved earlier in the month) on my towels after bathing.  My head itches, I scratch, I see hair stuck to my nails.

Yeah...

No matter how much I say that I know it's coming, that I will lose my hair, there's something you should know about me: I stay too bloody positive and hopeful.  Some people don't lose their hair to chemos and others will every time.  We all react differently to different medicines.  I hoped this new chemo would not make my hair fall out.  There was a slight chance.  Very slight.  Okay, almost no chance, but it was still a chance, dammit!

Please!  No "you're still beautiful" or "it's just hair" comments.  You mean well, but the dead horse is listing lazily to the left over there, if you hurry you can still beat it.  Just let me wallow in the fact that cancer is again very real in my life.  It's another reminder of what is hidden me, for my cancer is not presently visible.

Now excuse me as I invest in lint rollers for my failing hair follicles.

Friday 17 July 2015

Chemo.. For Life

I've started the IV chemotherapy.  Six rounds of that every three weeks, then they're thinking of putting me on chemo pills.  I'm hearing mixed reactions from people that have been on the pills, so far. 

This chemo is supposedly easy to tolerate.  So far I can agree with that.  I'm tired, and at times I don't realize how tired I am, but the nausea has been easily controlled, and I'm just starting to get joint/bone pain.  All the effects are supposed to be temporary but I don't know how to take that when the instructions all say "once you're finished..." to summarize effects.  If I can't tolerate the pill chemo, there's a good chance I'll be switched back to this IV chemo.  For you see, I'm stage IV (four), my cancer metastasized.  I'll never be "cured" we're trying to contain it, keep it from spreading further.  I'll be on treatment for life.

Many don't realize this.  Once you cross from stage III to stage IV you go from trying to cure it to keep it from claiming entire organs.  You hope that you can keep it contained.  You will be living with cancer, some refer to that as a "Lifer".

I have started up a "bucket list", I'll be sharing that at a later date.  I'm starting to look at what I want in life more than just what I need.  Everyone hopes they'll be remembered, it the end.  I'm looking at how I hope to be thought of.

I'm living with cancer, living with chemo, but I'll be living.

Tuesday 23 June 2015

Hair Today, Bald Tomorrow

So cancer is back.  And, with my case, cancer means chemo.  This chemo will, once again, mean no hair.  Of course, everyone says, "It's just hair."  They mean well, they really do.  They are trying to help cheer me up, help me cope with what I have to deal with.  What they don't know is what the hair means to me.

When I first started chemo back in 2010, I donated 20" of my hair to be made into a wig for someone else with cancer and still had hair to my chin.  I always had long hair.  After all this time, my hair was finally to my bra line.  Now I'm losing my hair once more.  What was my hair?  It was recognition of time since chemo.  I had grown that much since the cancer was evicted from my body, and I don't just mean the hair.  I had taken that much back from all that cancer and the treatments took from me. 

My hair was a trophy.  My hair was a badge of survival.  My hair was a sign of what I was trying for in a post cancer life.  My hair was a revival of the past.  Now, I lose it.  It will take me years to get back to this stage.  I might never get back to this stage, and that's another thing that non-cancer people will not understand.  I might be stuck on drugs and treatments that will never let me have any semblance of the appearance I have become accustomed to.  I might never look like I do now ever again.

Yes, it is just hair.  Yes, I might be able to grow it back.  But I might not be able to.  And, for now, I will be looking in the mirror and seeing someone with no hair.  Someone that all her life up until 2010, had had long hair.  I will find a way to cope, but it doesn't make it any less difficult to deal with.

But deal with it I will.  I might be living with cancer, but I will be living.

Tuesday 9 June 2015

Shave Time

Well...  It's back.  Cancer has taken residence in my ribs and lungs.  I'm currently undergoing radiation therapy, but I just found out that I'm going to be having chemotherapy, again.  Before I lose my hair I want to put it to use so I'm having a solo Shave for the Brave.  Please consider supporting my endeavour here:

Julie's Shave Page

Thanks for your support!

Thursday 2 April 2015

Conquer Cancer

Many get hung up on the title of calling those with or that had cancer survivors, but what if we looked passed that for a moment.  What about the word we use for the journey of having cancer that many of us that actually have/had cancer despise?  "Battling" cancer.  It's somewhat hated because it means that if you "lose your battle" then you are, in fact, a loser.  Cancer won, it is the winner, not you.  What if we conquered cancer instead of battled it?

You can conquer something without destroying it.  You can place your expectations, your realities, you bend it to your will and not the other way around.  You claim victory over it.  You overcome it.  You conquer your cancer.

Isn't that a better way to look at those of us that face cancer?  It doesn't matter if we are living with our cancer, if we evicted it, or if we die due to complications from it.  We can still conquer our cancer.  We didn't lose a battle, we mastered our cancer.  We lived every day and faced every treatment or obstacle.  We stopped letting cancer call the shots, we made cancer concede to our wills.

We are Cancer Conquerors.  We will not let it conquer us.  We will live, we will prosper, we will thrive!

Thursday 5 March 2015

Dilemma - internal struggle

As previously stated, I'm lucky enough to be pregnant, again.  Our new little one is expected in mid-spring.  I am excited for that, except for one thing, it's causing me to have some emotional distress.  Most would say, of course having a third child when you are permanently disabled, your husband is in the Navy, and you need to find ways to make your older house work for a big family, would cause some emotional distress.  That's not the part that is bothering me the most.  I will find a way to make everything work, that's the way my mind works.  I see problems and do my best to find logical or even totally out-of-the-box, zany ideas to help find a solution.  I've always been like that.  But now, I'm facing something where the only solution is the one thing I do not want to do.  Let me explain further:

In late May YACC is having their Survivor Conference in Toronto.  I have attended this every year since my diagnosis.  One year it was canceled, that broke a lot of our hearts, but they needed to do it.  In that case there was nothing that could be done about it.  I couldn't attend another Retreat, those are a one shot thing, unless there are re-occurrences or the like.  This time, this time...  This time I face three options for Conference.

1. Attend Conference solo as I have the other years and pretend I can leave with a potentially two week old at home with my husband and not have my heart ripped apart from being separated from my new family.

2. Attend Conference with my husband and bring along our new son...  A two week old...  Either drive to Ontario or take a two week old on a flight...  And stay in a hotel that isn't that well set up (last I saw it) for caring for young children.

3. Don't go.

Of course a lot of readers will say, "Duh, you go with choice number three!"  There's a small problem with that.  This is the one time of the year I get to see my friends through YACC.  The one time of the year where we are all cancer survivors, all young adults, all dealing with the isolation we have all year long.  We are at different stages in our lives/cancer journey, but we're not being surrounded with 60 and 70 year olds, telling us that we're "so young", "well don't worry about that, I didn't", and "you won't want to worry about those things once your older".  We're able to meet up and celebrate being around for another year, able to mourn as a group all those we lost since last year, and able to draw on each others strength to make it another 365 days until we get to feel that empty spot in our lives filled, again.

Yes, I should not give it a second thought.  I should just say that I, logically, need to go with option number three...  As I sit at home and have tears running down my face.  As my heart breaks once more, like when I found out we would not be having a Conference the next year.  It's just not seeing those friends again.  It's just not seeing that family, because they are more than simply friends.  It's just not connecting with those new people, giving them friendship and hope.  It's just being scared of who won't be there next year when I might be able to go.  It's just one more year.  Just a broken heart.  It'll just mend with time, I hope.  Until then, I'm just lost inside.

Wednesday 28 January 2015

Shave-in-waiting?

I'm thinking of participating in a Shave For the Brave for YACC.  I wouldn't be shaving it all, however, that's still a little scary for me right now.  I can, however, donate 10" minimum of hair.  There is no big shaves happening in Halifax right now, so I am hoping to find a few friends that want to participate, or maybe an organization/school/workplace that would like to follow suit.

For timing, I am hoping to have this done late March or before the end of April.  The baby is due May 15th, so I'd like to have it done well before Malcolm makes his appearance.  (Yes, it's a boy and we're naming him Malcolm).  Short hair can help with caring for a newborn, frig, my daughter is still going through a bit of a hair pulling phase.

If you know of anyone that would like to help out young adults with cancer to connect, feel less isolated, and more informed, please contact me, especially if you're willing to join up with me in this Shave.  You don't need to shave, you can donate a minimum of 10" or you can hunt out people to shave/donate, instead.  Lots of options and they all help people like me cope with having cancer.

*Click the links above for more info on Shaves and YACC*

Sunday 11 January 2015

Surprise!

I had a surprise pop up back in September, a week before I was scheduled to have my breast implants exchanged.  I was anxiously awaiting the surgery, it was very close to the last step of my reconstruction.  I had been having issues for over six months, however.  (Get ready to cringe guys).  My periods were shortening greatly, only a couple days at a time, and they were much more frequent.  One month I had two, another I had three.  My gp arranged for me to see a gynecologist in at the IWK to see what was going on.

I had a lot going through my mind.  There was the less severe things like going into menopause early because of the chemotherapy back in 2010/2011.  Another much more terrifying thought was that cancer found a new home and had started up this change in my body.  My husband was trying to help me stay positive, but he's realistic like me, so he was trying to see all possible angles, as well.  Of course, the day before my appointment he says one possibility that I had not given a single thought, and quickly dismissed.  I'll elaborate shortly.

I have the gyno my history, the elaborate story of my cancer journey, including the birth of my daughter post cancer.  At the gyno's I had a test that was routine, just a precaution, that they had to always preform.  The gyno came in the room, preparing to do a scraping of my uterus to test for a few things, including types of cancer.  She looked at the test, so did the nurse.  My gyno says, "What does the second line mean?"  The nurse is still staring at the test, "It means she's pregnant."  My reaction?  "What do you mean there's a second line??  That wasn't there a second ago."

Sure enough, my husband jinxed me.  He had asked me the day before, "What if you're pregnant?"  I said to him that this had been going on for close to 6 months, if I was pregnant I'd be showing just a little by now.  Besides, we had been using protection.  I refuse to use birth control pills since cancer, but they claim that condoms are 99.9% effective.  Well, guess what, we're that magical 0.1%.

The funny thing, I was just 5 weeks pregnant.  I'm not sure what was causing my issue for the previous 6 months, but it had not been the pregnancy.  Everything medical got put on hold.  No surgery could happen after they knew I was pregnant.  Luckily, I could still get the injections for my back and shoulder while pregnant, so that was a lifesaver at least.  But, the reconstruction is on hold again, and I was not looking forward to how my injuries from the car accident would be paining me throughout the pregnancy.

This was a big surprise, we didn't plan on having more children.  We had talked about it for months and decided to leave our family at four, not five, just us and the two kids.  I had started gathering all my maternity clothes to take to my friend's consignment shop in Dartmouth, we were going to next start gathering the baby items and clothes to clear out.  As luck would have it we had not quite done any of that yet.

We're trying to figure this all out as we go.  Part of our reasoning before for staying a family of four had been my condition with my back and shoulder, but that is out the window, now.  I'll get to test my ability to withstand pain as I will have three munchkins to take care of.  Thank heavens I have my hubby, and my parents and siblings close by.

Let the next adventure begin!