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

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.

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

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.

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.

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.

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.