Amazing Weekend & Rethink Breast Cancer

Sometimes cancer brings opportunities. Cancer brings with it lots of crap that you wish you could unload and never ever have to think about again. Yet, this time, I must say the opportunity that was thrown at me shed more light on the people, things, and advocacy initiatives that I want to be involved with.


 Rethink Breast Cancer is a Canadian not-for-profit charity that gears itself towards women under 45 years of age going through breast cancer. They have a strong focus on educating and advocating for young women. I was honoured to be selected and asked to come to Toronto for the weekend for a workshop geared towards becoming an ambassador for Rethink and implementing their Care Guidelines. Firstly, after the last few weeks that I've had this was a welcome change and I was excited to simply get away.

 I flew out to Toronto where they put me up at the Trump International Hotel. My wonderful mom was kind enough to fly out with me because I still wasn't feeling a 100%. Firstly, if you've never been to the Trump you must understand that this hotel is stunning!! It's one of those nice hotels where you stash all the soap, lotion, pen, and notepad so that they can stock it up with more the next day because it's so wonderful! Don't worry, I don't stash sheets, pillows, or towels; only the complimentary things;). I was already super impressed by the accommodations, so I could only imagine what the rest of the weekend had in store. After arriving on Friday, they had set up a dinner for all of us ladies who were from out of town in a private dining room at a fabulous bistro. The food was AMAZING, but the people I met were even more incredible. I finally got to meet the amazing Steph Gilman whom I had talked to online but never met in person. It's one of those meetings where you feel you have known them forever simply because you realize you have so much in common with them!  To be able to talk to others who truly "get it" is simply an indescribable feeling. To be able to throw medical lingo at someone you've never met and to have them throw the lingo back at you is a wonderful feeling!!!!! You don't need to explain to someone what things mean, and the conversation does not revolve around pity. I've said it before, and I'll say it again, I don't want pity!!!! I don't want pity or people being sad and telling me to cry, blah blah blah. I know what's good for me, and crying and pitying myself does NOT make me feel good, so people please don't tell me these things. I could have conversations of understanding without once feeling like they thought, "this is the shit-outta-luck girl," which was the greatest feeling of all. None of us chose to be a part of this group of young breast cancer women, but it chose us, so we decided to do what we could to make this "journey" more inclusive to other young women.


 Day two was the actual workshop. At this workshop, we were surrounded by some other women whom we had not yet met the day before who were all from Toronto. There were three of us living with mets, and it was nice to be able to connect and compare treatments, side effects, etc... I would never wish this disease on anyone, but when you meet some truly inspirational, smart, and empowering women it really does make you feel as though you can accomplish anything. It was great to hear about Rethink's vision and their increasing focus towards social media. I think that's great especially for the population they serve. Their private facebook group, RYWN, which is a wonderful resource for anyone who has, or had breast cancer to simply ask questions about treatment, side effects, basically anything. I wish I would have been involved in something like this the first time I got diagnosed because this type of resource is invaluable. Moving towards a more social media focus is huge, especially for the younger population with cancer. I never had even the slightest inkling to want to join a support group. That's just not me. Everyone is different. However, an online group is an easier way to connect for those currently undergoing chemo or for anyone who doesn't feel well enough to leave their house. You can go online, and simply browse the conversations, or you can comment and leave your input. It's simple and accessible for everyone.


 This day also involved a central focus around care guidelines that should be incorporated to achieve optimal well being for YOUNG women with breast cancer. I emphasize "young" because the needs of younger women going through breast cancer are extremely different. Many are just starting careers, getting married, and having children. Typically this is a time in life when we are reaching these wonderful milestones, and then this diagnosis abruptly halts everything. These guidelines are meant to inform our healthcare team about our very unique needs. We do NOT relate with someone in their 50s, 60s, or 70s. I absolutely sympathize with anyone diagnosed with cancer, but I have an extremely hard time taking advice and trying to pretend that cancer in your 20s or 30s is in any way, shape, or form the same. It just isn't! It's not normal to face your mortality when you are beginning your life. It's not normal to make medical decisions that could impact your future fertility. It's not normal to have to leave your career that you love because your time has suddenly been condensed and, sadly, you must recognize what is the absolute most important aspects of your life that you want to focus on. It's just not normal or natural to have this disease in your 20s. I truly hope these care guidelines can be introduced into cancer centres across this country because there is a huge need that must be addressed. As well, when a young woman is diagnosed, they may not even realize their very unique circumstance unless their healthcare team brings it up. Let's be real, being diagnosed with cancer when you're young leaves you completely numb and frozen. You feel like you've been thrown out of an airplane and landed on some island (we aren't talking about a St. Barts island but a much crappier island), and you are completely alone, confused, and lost. Sometimes you need your team to bring up issues around fertility because you may not even recognize the impact that treatment will have on you and your future plans. There's a lot of "unique" needs of young women even pertaining to sexuality and body image that may not be imperative to our older counterparts.

 Overall, I had an amazing weekend connecting with other amazing women. To get a further glimpse of the wonderful work that Rethink Breast Cancer does for the community and young women was great. To recognize that there are so many empowering and strong women dedicated to making the lives, for people like me, so much better was truly inspirational. Every young woman diagnosed with breast cancer deserves to be educated about their course of treatment, short and long term side effects, and the overall impact on your quality of life. I thank Rethink for including me in this weekend workshop, and hope that any young woman going through breast cancer can connect with this organization.

 If you are a young woman (under 45), who has/had breast cancer check out their site and the care guidelines! As well, you can join the closed Facebook group, RYWN, where you can connect with other young women going through similar circumstances. http://rethinkbreastcancer.com/get-involved/campaignsforchange/care-guidelines-for-young-women-with-breast-cancer/

I feel very lucky to have met these amazing women:)

 

This is the lovely Steph Gilman. In my mind I felt like we should have been the same height. Thank you for being so welcoming. I gained a friend for life:). You must check out her great blog if you haven't yet at:

http://passmeanothercupcake.com/

Anna Craig who is also living with metastatic Breast Cancer. Anna also has an amazing blog at:

https://annacraigblog.wordpress.com/

Our view from our hotel room. Toronto you need to warm up!!!!! Bone chilling cold, and this comes from someone who has constant hot flashes, but I was still freezing!!!

 

The last night my mom and I realized we had no pics together!!! Therefore, we decided to put on our Trump robes and pose. We very well could have taken this pic at home, but nope our robes clearly state: Trump. Love you mom, and thank you for doing anything and everything for me:)

 

 

The Dark Side of Pharmaceuticals

Ok, I've decided to come up with my own mnemonic for this fabulously, completely crappy drug i've lived on for this past week!!! GABAPENTIN!!!!! Now, the last week was hard. I mean really hard. The pain I had was excruciating, hence the desperation and then the trial and error bit. As a nurse, I know the uses for this drug, but I suppose I never realized how immensely and how negatively it would affect me. To be totally honest, I remember very little of this past week. My mind was in a haze, completely foggy, and I didn't know if I was coming or going.

I said things, and apparently did things I don't remember!!!! Like at all!!!! I'm surprised my poor family didn't murder me because I was not an easy person to be around. My husband reminded me of the loving wife I was this past week when he told me what I did while under the influence of this drug. I apparently threw my thermal heat pack right at his face and told him, and I quote, "warm my fu*k*n heat pack cause I'm in pain! and remember I'm the one with fu*k*n cancer." Umm... I said that, and did that??!!!! That is not me, and I'm sooo ashamed that I even acted like that. However, I realized when I was coming off this drug just how dependent I got from simply being on it for one week! I wasn't on this drug long term, yet I felt withdrawal symptoms like a heroin addict coming off their drugs!! Who the heck had I become? Definitely not someone I liked, or would want to be friends with that's for sure! My poor family had no choice. They're family, so the fact they didn't kill me ranks very high in my books, and I will pay them back for this weeks instalment of cray cray Judit!!

Now every time I hear the word gabapentin I think of that stupid show that used to be on Treehouse: Yo Gabba Gabba. Yes, this is probably from being a peds nurse and watching my fair share of Treehouse, whilst wanting to shove one of these fat, little "fugly" creatures down a mountainside, but I would smile and pretend like I was sooooo into this show. Now I wonder if the creator of this show was on Gabapentin when they came up with it!! I mean, you are transported into one very fucked up world on these drugs, and this show...well it's kind of fucked up in my eyes; sorry.

 Now... let me transcend you into what this drug should be classified as according to none other than...moi...and firsthand experience. It's one thing to print a label on a drug and say, "may cause drowsiness." No, no, no. Soooo not in proper context at all!!!! You will feel like you're on Ambien and you will have no clue what you did while consuming this drug. None. You will likely not accomplish great things on this med but, rather, you'll be like a hazy, dependent, very bitchy, drugged up version of yourself where even the slightest piss off seems like a pretty reasonable, and just cause, to provoke physical harm on another. NOT NORMAL!!!!!!

G- goddamn, no good, piece of shit!!! Everyone was defined in these words last week.
A- addictive, active anger, & agitated
B- bitch, you will be a bitch on this drug. Period. Try to fight it and you guessed it...you'll be a bigger bitch!!
A- anger. Ugh. Please don't ask me anything as I have no capacity to answer you.
Hence, angry. Everyone was dumb last week, except for me of course.
P- pissed right off. Over everything. Don't look at me like that, don't say that, and don't try to get how awful I feel. You won't get it!! Pop a pill and we may be on the same page;)
E- easily distracted with no memory of...anything. Scary!! EXHAUSTED.
N- nothing is going to be ok, or good for that matter.
T- terrible headache, increased heart rate, terrible all around:)
I- impossibly hard to maintain any form of sanity. Sanity, what sanity??
N- night shakes, no patience, no appetite, and just No good. Why don't we put labels like that on the med... "Just no good." I would be very appreciative for the honesty.

If I ever have to take this med again, and I never ever plan on taking it again, I think my family should throw me into one of those underground tornado bunkers, like the one from the Wizard of Oz. This way I can be alone and not hurt anyone, both physically with a thermal heat pack, or mentally. I was the damn tornado this past week, and I feel like I'm coming out of my bunker simply evaluating the devastation I caused. There's no excuses, and I am so sorry to all my loved ones for the crap I put them through. They didn't deserve any of this. Gabapentin we are soooooo friends off and we will never be on good terms. EVER!!! Here's to the fog lifting, and letting the sunshine in. I know I need it, but my family may need it even more. They may even need therapy after this week.


Here's a low down of things that simply made me angry last week (what I can remember). Yes, this is "ranty," but it was oh so therapeutic to express. Normally, these things would have zero weight or affect on my life, however gabapentin changed this:)...

Sitting in the car, not driving, with a car in front of us littered with beanie babies in the back and a box of Kleenex in the rear window. Why do people put Kleenex there?? Let's be real, there is no driver who can reach back there to grab a tissue when they have the sniffles. And then your stupid stuffies, why??????? Not to mention these people are the SLOWEST drivers on the road. Probably because they're worried their precious beanies may tip over!! God forbid, big problems! Piss off número 1!!

 Now just from driving to get to my destination there was something else that pissed me off. People who decide to advertise every member of their family including, and not limited to, every child, extended family member, and pet with a sticker. Seriously people, I get a headache trying to read your damn family tree on your car!!! How this is not considered distracted driving is beyond me. Ok, so this minivan has 3kids, no wait... 2bio kids, and one step child, and then we got a cat, and a fish, oh and grandma moved in so we need a sticker for her and her walker. Wow. Exhausting. Piss off número 2!!

 Going for blood work. Now take a mental picture of this. I walk in and there's not one person in the waiting room. Not one. I put the req right in front of her face and she looks at me and says, "take a number." I wish I could have captured the look on my face because I was so drowsy, so annoyed, and could barely stand up. Ok I'll take a damn number. I pull the number and surprise she calls my number immediately!!!!! That was 10seconds of my life I will never get back! Piss off número 3!!!

Then I sit down in the room to get blood work. I thought there was a backrest behind my head so I slowly relax, and I simply rest my head back, and nope no back rest for my head there! I flail like a stupid fish out of water, and the person who takes blood turns quickly and asks, "are you ok?" Oh yes, I'm good. Why do these chairs not have a place to rest my heavy head?? Piss off número 4!!!!

Today I also realized I have absolutely no clue where my garage door opener is!! I haven't driven in the past week, so this one completely baffles me. Maybe my hubby took it out, out of hopes I would leave and then I couldn't get back into our house!!! I wouldn't blame him, but if you are one of my friends whom I may have mentioned my garage door opener to in the last week, could you please let me know;).

Well...that's the low down of what prescription drugs did to me. I still have a headache writing this, but I am 10x better than I was last week!! This is from one drug. ONE. We need to do better. We need better drugs with less side effects because, for those of us with cancer, this can become a vicious cycle of managing pain while trying to manage our sanity. If you managed to get through this blog, and I have not insulted you; Thank You. What a week!!!!

One Year

One year. Can you remember what you did this past year??? Work, cook, run errands, take care of your kids, and repeat? February 7th, 2014 was the start of the Winter Olympics. Oh yes, and it was also the day I got diagnosed with stage IV breast cancer. Yes, the day my world simply stopped. Don't get me wrong, I had my own little pity party, but I also chose to get over it. Seriously, I know we must grieve, but I'm not dead. Enough with the grieving!!! There's always gonna be time for that, but your chance to live is NOW. Death is not even close, and honestly the last year wasn't all that bad. Yes, their are constant treatments, little surprises (solitary brain met), but we have always moved onwards and upwards and have enjoyed our time during the in-betweens.

Here is a little run down of the past year:

I have had 19 Herceptin infusions, one every three weeks


I took countless clodronate pills to strengthen my bones, 4every morning, with GI side effects I didn't
care to continue, therefore switched to intravenous bisphosphonates

I have had 9 Zometa infusions to strengthen my bones, one every four weeks (the first one sucked, but it got better)

5 CT scans of my chest, abdomen, and pelvis just to keep track of these little buggers that like to wreak havoc on my health in unpredictable ways. This included a CT of my brain to map out the stereotactic radiosurgery they did

2 Bone scans (I think)

3 Brain MRIs, one indicating cancer. Treated and then stability...yaaay. Chill out in my brain. PLEASE!!!!

Approximately 5 ECHOs as Herceptin can cause a decrease in the left ventricular ejection fraction of the heart which can lead to heart failure, however it can be reversed!!! YAAAY to reversible heart damage. I can handle that:)

5 Zoladex injections to essentially put me into menopause and slow these hormonal driven buggers from acting up. Just google the size of these "subcutaneous injections."  Oh the hot flashes that ensued... Sweating, excessive heat, and cursing. Lots of cursing!!

Daily Letrozole pills, countless amount of bloodwork, unexpected stereotactic radiosurgery, and some surprise X-rays, oh yes, and apparently I am allergic to the CT contrast!!! Surprise!! Because I LOVE medical surprises. Ok I don't like any surprises, let alone when it has to do with my health!!!

I could handle all this. I did handle all this and then, almost a year after my mets diagnosis I woke up in excruciating pain. I instantly knew it was nerve pain. I felt like an 80 year old with so much pain, but with no clue where it originated from!!! Thank goodness for an amazing hubby who helped me move from my bed to go downstairs as I had pain to my shoulder, right under my clavicle, and around to my back under my scapula. I couldn't even raise my arm or drop it. I was a mess, and desperate. My hubby found my stash of gabapentin and morphine which I literally have not taken in the past year and popped them like candy. I felt pretty desperate, and I can honestly say I have never felt this broken, in extreme pain, and uncertain since my mets diagnosis. I guess I never expected to feel so poorly, so suddenly, and without much warning.

I wanted to go to emerg, but at the same time I was in so much pain I didn't think I could get there. I knew my oncologist was going away on vacation but I didn't know when, and it was Saturday. I decided to try, out of pure desperation, to contact him. Honestly, his act of kindness and dedication to his patients almost left me in tears as he called me within 15minutes. He told me to start on steroids to help with swelling, to take morphine hourly, and gabapentin for nerve pain. He then sent a req to get x-rays to make sure it wasn't an instability or fracture in a bone. Plus he expedited a PET scan I was to have at the end of March to get done within 3weeks. After we went over all the drugs to take, I curiously asked when he leaves for his vacation. His answer: in an hour. Ok, seriously, to say I was appreciative doesn't even begin to explain my realm of absolute thankfulness for everything he has done. The fact that I didn't even need to leave my house and go to emerg was great!! As I write this I still feel like I'm in a drug induced haze, so I apologize if my writing reflects this, but my pain level has come down to bearable. I now have some cracking/popping noise happening just under my left clavicle (more medial, close to my sternum) with deep breathing and movement. What is this?? No clue yet, but I can only worry about one thing at a time. Pain is manageable and I'll take that, and that's all I have the capacity to focus on right now.

Yes, cancer is unpredictable and things happen in a fashion I have nillo control over, however there's 365 days in a year and most those days were simply amazing. I have a new nephew who gives me even more joy in my life then I can tell you, just like my sweet nieces. My wonderful brother and sister-in-law. I have an amazing hubby that will do virtually anything and everything for me. My amazing mom who is always there for me, and does anything and everything without once questioning a thing. My beautiful bestie who has surprised me more than I can count whom gets me laughing uncontrollably in the most questionable situations. Thanks for that buddy;). All my lovely nursing friends who have done countless acts of kindness, the Calgary firefighters who cease to amaze me with everything they have done even though many of these lovelies have never even met me. Thank you. My many cancer friends who simply get it. I would not trade these friendships for anything. Some of the strongest women I have ever met who give me strength on a daily basis. All the health care professionals, my oncologist, my many lovely nurses, techs, everyone who has simply smiled and acknowledged my presence; Thank you. The good has still outweighed the bad. It's because of all you that this past year was still amazing!! As I look back, I can't help but look forward to the amazing opportunities this year will bring me. I will keep everyone informed on what's going on and the wonderful opportunity that may lay ahead of me. An opportunity to be involved in something bigger, but something that has literally taken over my life; breast cancer.

Everything happens for a reason, and slowly I'm starting to figure out what that reason is. Onwards and upwards. We have lots of plans for this year and I know, despite the bumps in the road, they're exactly that, bumps in the road. We all get over it, and that's exactly what I plan to do. People, please don't complain about your life because it's in your hands to change!! If you have good health this world is your opportunity to do whatever you like!! It doesn't get more amazing then that, but you must open your eyes and seize the opportunities you get, or else your life will pass you by, and the only person left to blame is yourself.

 

 

February 7th/2014-This day changed my life, but I decided that day it would not ruin me. Moving on. I think this year will only get better because I'm not about to slow down, and cancer is simply this little bastard that will tag along, but it will not control me. Nope. Cancer, you little bitch, you get to sit in the back seat, and I refuse to let you take the lead. Not today. Not ever.

         (I was on quite a few drugs when I wrote this, but that's ok. This is me...drugs or no drugs.)