Disney Attempt Number Two..And Some Pondering...

Hubby and I got away to California in July. It was a repeat of Disney that we tried to accomplish over two years ago to which we found out we couldn't find overnight accommodations, so here we were at attempt number two. I'm happy to report we planned this vacay this time and we had no issues of "oh Lordy where are we going to sleep."

The last time I went to Disney was as a child. I am now 31, but I feel we (hubs and I) are young at heart, so we dove right in with all our expectations and headed to Disney as soon as we were up and planned to spend our entire day there. Sounds fun, right? Holy crapola we quickly learnt we are old...like not denture old, but old as in our ability to tolerate some of these rides!! Firstly, I LOVE the heat, sunshine, etc... However, I typically lay on a beach or by a pool, hence how I tolerate and love it. When we were down there they had a heat wave, which would normally excite me, but not so much when you are on the grounds of Disney, with herds of exhausted, hot, screaming children and crowds galore. I HATE crowds. I like my space...at least my arms length as that's my personal comfort bubble. My bubble burst quickly...actually a bubble never existed as people would literally rub up on me as we stood in 100degree + heat, sometimes for hours to get on a ride! I kept telling myself "this is the happiest place on earth...this is the happiest place on earth.." But there's so much rubbing up I could take from strangers. Firstly, it's not necessary as there's more then plenty of room but add the heat to it and it is pretty unbearable. I also realized that the heat combined with many 3D rides made me feel not so good...like at all. I really thought I would be fine as I was off of chemo during this time period due to toxicity but my "ideal" health scenario was a bit less then ideal:/. At one point, while standing in line, I felt super unwell. You know when you get a feeling of complete doom and gloom and you are simply trying to tell yourself mentally that you won't pass out, while your head feels like it is being crushed in a vice, while standing in a line for hours for a ride that proves to be anticlimactic, and you eventually end up on the floor voluntarily to prevent an involuntary collapse on the floor? Ya, that was me! The headaches I got from the 3D rides were pretty close to unbearable and I quickly realized that I had limitations. I refused to ever stop, so instead I stood in lines for hours with the hubs man while he would ask incessantly; "are you ok...are you still ok?" To which I always responded; "I'm great." Between Disney and Universal we were kept busy but I have no regrets and we did have fun. With the hot flashes and the heat wave I'm surprised I didn't spontaneously combust into a raging inferno...i'd be a one woman show! We purchased those misting fans which I used constantly to the point that it ran out of batteries...there just wasn't any other way to get through the heat!!

We also went to the Comedy Store one evening because we absolutely love stand up comedy, and to say we laughed our heads off would be an understatement. It was vulgar but sooooo good!! I think we both actually liked this better then Disney (likely because we were in an air conditioned room, sitting, eating, and laughing our heads off). My other favourite day was our beach day. If you are that close to the ocean then you MUST go to the ocean. We went to Newport and Laguna Beach, and the day we sat on the beach was just perfect. The sound of the ocean...the sun...the vastness of the water is truly one of my favourite things. It's as if everything else in my life, such as the dark cancer cloud that looms over my head everyday was kind of an afterthought because in that very moment my life was perfect, and I mean just completely calm and wonderful. The ocean water proved to also be beneficial for my toxic, Xeloda feet. I honestly couldn't remember the last time my feet looked so good...this was a plus as I can use this as a very convenient excuse to go on more ocean vacations:). I felt so good and refreshed and that's probably why this was one of my fave days. 

Overall, I'd say we had a fun packed, busy, relaxing, and wonderful vacation. We did everything we wanted to and saw everything we wanted. 

Once we were back I caught up with friends, including my cancer peep who is also stage IV and in her early 30s. It's funny how my conversations are so different with my healthy peeps because I only have a handful of non-cancer friends that truly understand this life and what it entails. One of the things we discussed, as she has a toddler, were people in society and how clueless many are who have never experienced a real life traumatic event, such as cancer. My heart broke because the mundane, relatively easy things we do in life become monumentally hard when you have cancer. She mentioned watching other mothers pick up their children with ease. This was something that she would love to be able to do without a second thought, but thanks to cancer it becomes a task that needs to be thought out. When you hear healthy people go abouts their days we agreed that they seem to take everything for granted. We discussed how we can plan for one thing a day, otherwise we suffer and require double that amount of time to recover. Who else in their early 30s needs to deal with this??!! Recently I Saw someone post an article about how "hard" it was to be a parent, and then others commented by complaining about their own children, and I just wondered...seriously?? I've come to realize that life is a series of choices, intertwined with some random shit that we don't choose (ie: diseases, accidents, etc...). The random shit that intertwines is just plain crappy, and the only choices we are left with are how we choose to deal with it. Children to me have always been viewed as the ultimate gift, and the best choice someone could make in life would be to have their own little miniatures running around, happy, loved, and healthy. At this point we all know I wasn't privileged enough to be able to have children, but my friend who has cancer does have a child and she stated that after getting stage IV cancer she realized how incredibly easy it was to have a child when HEALTHY. When I browse Facebook and realize my many beautiful young mama friends, and realize they are dying or deteriorating due to cancer I see their desperate pleas to have more time, not for themselves but for their children. They don't complain about their babies as they get it: having children is a privilege and the things healthy mothers would view as complaints they view as another day and another moment they got to experience, not as a burden, but rather as a gift. Then I watch these beautiful kids grow another year older, without their mothers by their side, and wonder how proud their moms would be if they were still alive to see it...reaching milestones that I remember their very own mothers pleaded to be able to live to see, but life had other plans and the randomness of disease took them from getting to be able to live to see the things that others continue to complain about.

I suppose when your life is stripped to the core, and you have a disease that slowly, or abruptly, changes and the simplest tasks require thinking about then my views of "hardship" are very different. Sure, children can be challenging, but I don't care to hear about how hard something is when you CHOOSE to have children...the last I checked there was only one Virgin Mary and I have yet to meet another, so let's just admit that there is no such thing as a "surprise" pregnancy. I can't tolerate parents who don't realize how truly blessed and lucky they are and I'm at that point in my life that I may actually call you out if you choose to bitch and whine about the very life you chose to bring into this world. I know many will not agree, but until you have a terminal disease please don't mention how "hard" your little blessings may be. It's odd to live in this parallel universe where you remember being well and how carefree and easy life was and then to recognize that that life is over and never coming back. Now it's all about living strictly in the moment...the moment is all I am guaranteed, so I choose to embrace and enjoy this moment, and whatever tomorrow brings will still remain as that; tomorrow and not a reflection of my today. 

Apologies in advance for the loads of pics...

Laguna Beach with the hubs..my happy place:)

A pic of our big ole heads with the castle in the background and some random with Minnie ears (this is the best we could do, but the pic below will explain why)

We were happy in this pic and the background was visible!! However, right after we took this pic with our selfie stick some not so friendly Disney employee came to kick us out as selfie sticks  are considered prohibited items!! Seriously, they wanted to escort us out. I honestly wanted to take the selfie stick and use it for other means as this young guy was insanely rude!!! Note to self: Don't bring selfie sticks to Disney!!

This was one way to beat the hot flashes but my hands couldn't waft this fan quick enough to cool down. As well, by the end of our trip I had broken this fan too. If anyone knows of a good place to purchase some cute fans, both battery powered and ones without please let me know!! I'm hot as hell!!

Driving to our beach:)

It's hard to see in the pic but this was some massive ahi tuna that was sooooooooo good!!

There's really nothing like a sunset over the ocean

California Adventure

Cars ride...we bailed out of this line not long after this pic. We chose our sanity on this one

This sign made me laugh. Hmm any of those parents who complain about their kids want to drop them off...we will happily find and keep them:)

We really are so tiny in the grand scheme of things

Harry Potter Land!! I'm not even into Harry Potter, but this was pretty darn cool and fun!!

Who doesn't love minions??!!!

When we got home I had scans and this just shows our pure elation to have received some more good news: STABLE. Now onto the next adventure...

Its Been a While

I realized I haven't updated my blog recently, so thought I'd pop by to say I'm still alive!!! Yaaay. Come on, I know whenever we follow a cancer blogger and their posts suddenly stop, the sad collective mentality is always what we all fear: death. Seriously, how warped and completely fu*k#d up is that!!!

Truthfully, I haven't updated because I have been busy...and I'm happy to report it's not in pertinence to cancer! I've been busy living and doing the things I enjoy. My nausea that has literally lasted the past year since starting on Xeloda & Tykerb have suddenly subsided. My mornings of feeling completely nauseated and laying on my bathroom floor are GONE!! I CAN WAKE UP IN THE MORNING AND FUNCTION!! You must understand this makes me unbelievably happy and I've been slow to mention it as I don't want to jinx myself. This is HUGE in my world. Nausea for ONE YEAR EVERYDAY had really bothered me and affected my quality of life. My hands and feet are still angry at times...I take an extra week off chemo (or two) as needed and I'm not as bothered by doing this anymore as I do need to be able to walk;). I'm on a break as we speak as I knew it was becoming toxic again...not being able to walk without looking like a darn oompa loompa, cursing more then usual, waking up unable to close my hands due to swelling without having my skin tear, mouth sores, and having my appetite just completely disappear were my alarm bells to STOP. These meds can seriously cause a pretty awful spiral that just isn't worth it at this point. I can take breaks, whilst still knowing I am not causing my cancer to go crazy. I used to think I couldn't take a single break so I'd push on and then I realized once the chemo and Tykerb accumulated...well...that could kill me too!!! Death from any form is not a goal, hence I stop when needed, plus I'm happier overall when I can eat, walk, hold hot beverages without feeling like my hands are being dipped into acid and then put on a hot burner, etc... It also makes those around me happier as I'm not as bitchy either. It really is a win win for all parties involved:). And please don't try to compare the nausea that lasted this long to pregnancy...no, no, no. With pregnancy you get to grow a little life, but with cancer we just simply grow more cancer that doesn't turn into a baby, but rather a tumor:/. The culmination of months of nausea isn't the pure joy of a baby, but rather wishing the nausea just stops so we can actually have a quality of life, whilst simply hoping the treatment that is making us so sick is actually working on our cancer. We tolerate so damn much that sometimes it really pisses me off that this is really the best we have. Cancer treatments are gruelling, never ending, and just bloody hard. It's like running a marathon with no end in site...which in our worlds is great as the end of our marathon would be us plunging down a darn cliff to our demise!! Don't ever sign up for this marathon...like any of us did this willingly. I won't remind everyone about what a goody two shoes I was prior to cancer (eating right, not drinking, playing with Barbies into my early teens...yes I'm admitting to this, etc..) as I know everyone likes to think that they can control their destiny, but apparently 'randomness' seems to play a bigger role in cancerland as most the people I know with this disease were crazy healthy prior to cancer. The futility of treatments is not easy to accept, but I am very much happy and enjoying my life. I've learnt that the only way to maintain your sanity while going through this is to simply focus on the day to day, and not plan long term. The longest in advance we can plan our lives is three months. Therefore, when it comes to vacations we typically pay more as we don't have the nice convenience of planning a year or even six months ahead of time. So we pay more, but we REFUSE to stop living and doing everything and anything we love even if that means we will be broke by the end of it.

I am happy to also report that a group of us metsters in Calgary have decided to start a Canadian MBC Advocacy group. We polled others in Canada living with MBC, and I'm happy to say we seemed to have gained some momentum in tackling Canadian issues in pertinence to MBC. I'm so happy to have connected with some other fierce advocates who are willing to really dig deep to enact change! Advocacy is hard when you're on your own, and then add a terminal cancer diagnosis to the mix; it becomes almost impossible to manage advocacy and our disease. We have already met with the oncologist who runs clinical trials out of our cancer center, along with the manager, after he asked us to meet! Seriously, I love when physicians are willing to hear about the patient's perspective, our agenda, and how we seriously want to improve the number of clinical trials and early phase trials our cancer institute gets every year for MBC because, as of now, I truly feel we can do more. The door has been opened and now we press on and ensure our voices are heard, respected, and hopefully we can get collaboration with other oncologists, advocates, and just ordinary people who understand our plight. Maybe I can even push to get a grant for a cannabis clinical trial...this is a tall order, but combine this with some unrelenting advocates, align a sponsor, and honestly the impossible may actually become possible! Seriously, this stuff excites me!!! It gives me a purpose in a life that I felt was halted and simply frozen. If I can't have children, I may as well try and change the landscape of this disease with the help of some amazing advocates by my side!! However, if a baby landed on my doorstep, or even two or three babies, I would happily accept;). Really you could plop as many babies as you'd like on my doorstep and they would all be amazingly cared for...my address is...just kidding...ya but kind of not kidding:).

At the start of July we went on our annual family girls trip to B.C with my mom and my nieces. It was nice to get away for a few days and just simply relax. The weather was a bit iffy, but we had fun regardless. I love watching my nieces simply living, carefree, without a worry. Their biggest worry is bedtime as they simply want to keep on going. Children have an innate ability to live in the moment better then anyone else. I truly feel we can learn so much from them, and I treasure their imaginative and innocent little minds.

When I wrote this I was sitting on a plane and headed to California! A trip we took two years ago, which didn't turn out quite as planned simply due to a convention that was in town which basically created a pickley situation for us as there were nillo hotels with any vacancy. I'd be lying if I said I didn't have any aches and pains as the past week I have had some pain to where my bony mets are, but I am officially on vacation and refuse to care or allow it to spoil my fun. Scans are fast approaching again in August, but that's in August and right now, in this moment, I will choose not to care or allow it to erode my sanity. After all, the key is to take it day by day, and today I am on vacation and that's all that matters:).

Pics from our trip to Invermere...

Rethink Forum on Medical Cannabis (April)

I was asked by the wonderful not-for-profit organization Rethink breast cancer to speak on a panel at a public forum and open discussion with a live Facebook feed around the topic of medical cannabis in Toronto. This came less then a week after getting home from Philly. I've realized that when I go on little sleep and go, go, go that I end up getting super run down and eventually end up getting sick. I didn't have time to get sick, but despite my strong wishes to not get sick...I got sick. Thanks to my easily accessible onc I was able to get a script for antibiotics before leaving for Toronto;).

I was excited about this trip, not only to speak about a topic that I am passionate about, but that my hubby was able to come along so that we could make it into a little mini trip! When we got to Toronto and got settled in we were both fairly tired, so we decided to head to bed. I had to resort to sleeping pills as my medicinals were at home. Well...this time I can say these sleeping pills may be fairly similar to Ambien...AKA: you will do things to which you will have ZERO memory of doing...like none, zip, zilch, nothing!!! I don't like any side effect that affects my mental capacity in any way. Well I learnt that when I "thought I was asleep" I was actually on my ipad. My hubby told me the next day that he had told me multiple times to go to sleep but I was not budging, and apparently at one point went into the bathroom to resume my ipad time. It wouldn't be until the next day when I realized what I was doing on my ipad...naturally I was online banking!!! I had credited myself thousands of dollars on my visa!! I'm hoping there were no purchases made on Amazon, however I guess that's something to be figured out in the coming weeks! Number one rule I'd like to tell anyone on sleeping pills: hide your electronics and DON'T resort to online banking at 2am. Lesson learned.

The next day I had a panel discussion in the evening. It was lovely to see the ladies from Rethink again, as the last time I saw them was just over a year ago. The ladies from Rethink are some of the kindest people I have met, along with being so warm and welcoming. The panel included myself, a grower and activist for cannabis normalization, an addictions specialist, and a palliative care specialist. I felt like the panel was a well rounded group, representing different areas which I feel are crucial when speaking about this topic. I must say, when the discussion around cannabis occurs, the stigma continues to prevail in regards to the public's perception on recreational users. Marcus Richardson, one of the panelists, also known as "Bubbleman," has been in this industry for 20+ years, however individuals with little to no knowledge around this topic don't understand the value and education he brought to the table. His knowledge base around this plant is extensive. He seems to understand this plant, and its medicinal properties better then most people I have ever met. I appreciated his ability to educate everyone with the knowledge he has garnered in his 20 plus years in this industry. The second component of this panel I liked was the fact that not one, but two physicians were able to speak up about cannabis and its medicinal potential. I say this is HUGE as most physicians either know very little about cannabis or are far too conservative to even speak about it (at least here in Alberta we are beyond conservative; unfortunately). THIS is a problem. This comes down to a very core issue. Individuals resorting to medical cannabis do so because the side effects from traditional supportive meds simply aren't worth it. Here's a little bit about living with an advanced disease such as MBC; we can have a multitude of symptoms from both the cancer itself, but many times from the harsh treatments we are receiving as well. Take into account our love/hate relationship with narcotics. Yes, it'll help with our pain but it'll also leave us foggy and drowsy, plus constipated. Lovely. The trade off is not super ideal. So now we are also constipated and require a stool softener to fix the side effect caused by our supportive meds. Each medication and therapy have their own host of side effects. In the end we can be taking half a dozen meds just to combat the side effect caused by the latter!!! Sadly, this cocktail may alleviate our pain or nausea but leaves us so tired and fatigued that we would spend our days in bed or on the couch. How is this LIVING??!! Palliative care is about quality of life, and yet we are simply allowing people to exist. There's a huge difference between existing and being able to actually enjoy life. Simply surviving day to day was never a way in which I wanted to live, hence medical cannabis' arrival into my life;). Our live FB feed for the panel discussion generated over 20,000 views!! I'd say there's a shift occurring as the anecdotal evidence increases, people are starting to become intrigued by its medicinal possibilities.

The panel discussion ended up being an informative evening with many in attendance, interested in obtaining medical cannabis and unsure of how to gain access. Here is the thing in Canada: We have legal means to obtain medical cannabis through a program the government introduced which is called the MMPR (Marijuana for Medical Purposes Regulation). This program is not without fault. For one, individuals such as myself, who were diagnosed over two years ago did not have access to cannabis oil which is some of the most potent, and known to be beneficial ways of taking it. This is what you take if you have that smidgen of hope that maybe, just maybe it'll slow the progression of the disease. Even the National Cancer Institute acknowledges its medicinal potential which you can read about here:  (http://www.cancer.gov/about-cancer/treatment/cam/hp/cannabis-pdq#link/_105_toc). What I love is every time they claim to find a negative effect, further digging only contradicts this and states it's actually beneficial! Did you know that most the studies ever done in the United States were actually meant to prove cannabis' detrimental effects, however the only thing to ever come from these studies has actually been beneficial effects, lol. Therefore, many had to resort to the grey zone of dispensaries. This is also difficult as my concern with many of these pop up dispensaries is quality control. Whose growing it? Is it lab tested? What's their extraction process? These are all vital elements to consider and important factors, especially for those who may be immunocompromised. The MMPR set in place licensed producers (LPs) which ensured quality control. However, LPs only started making oils in the past few months and I have yet to find an LP who manufactures a ratio of THC:CBD oil with an equivalent potency to what I currently take. As well, what many don't realize is even when you purchase through an LP there's significant costs involved. It's not like getting a prescription for a narcotic where your provincial insurer will cover it. This is all out of pocket for patients. THIS is another huge barrier!! People who take cannabis oil as a complimentary therapy for their cancer care take a LOT. This adds up quite quickly. When individuals argue that "it's our choice to do marijuana and our insurance shouldn't cover it," I simply shake my head because these are individuals that have nillo knowledge around any of this topic. For those of us with cancer, we don't "choose" to be in pain...or to be nauseated from chemo... or to not be able to sleep...or to have no appetite and an inability to eat. Therefore, all we want is for our side effects to be managed so that we can actually enjoy living. I think this should be a basic human right in my eyes. Overall, this would cost insurers less as cannabis is very much like an umbrella medication. When on traditional pain killers, steroids, antiemetics; they all come with their own baggage which requires another med, then another, etc... How does this end up being cheaper? It doesn't, but the heightened stigma based on fear and propaganda has been so far perpetuated that many individuals in society won't change their mindset around this topic. Heck, even if it turned you into a darn unicorn in front of their eyes, they'd still remain deeply rooted in their opinions, and never conform to the notion this may actually have medicinal properties.

At this point, unless someone can show me evidence, SCIENCE, that there's a proven negative to this plant then their opinions remain exactly that: opinions that hold zero bearing on what I feel about cannabis. Considering this plant has been around for thousands of years and people have been using it for centuries in different cultures, makes me upset that we still know so little. Thanks to a completely unfounded prohibition it has cost us how many years of potential research??!! This upsets me as it has cost people suffering...needless suffering. There remains ZERO documented deaths from cannabis. ZERO. Yet, according to the CDC in 2014 alone, more than 14,000 people in the U.S died from a prescription opioid overdose. Deaths have literally quadrupled since 1999. Yet, where is the uproar over this??!!!! There isn't because we are still caught up with reefer madness and all fear that is based on ZERO facts. Here is a great article that was recently published in the National Geographic about cannabis that may be worth a read for any naysayers: (http://ngm.nationalgeographic.com/2015/06/marijuana/sides-text). Even in the March issue of Current Oncology (Vol. 23, Supp. 2), a reputable, scholarly journal notes: "CB1 or CB2 receptor agonists (or both) reduce the formation of distant tumour masses in animal models of both induced and spontaneous metastasis, and inhibit adhesion, migration, and invasiveness of glioma, breast, lung, and cervical cancer cells in culture." Further established in the publication it notes: "recent observations suggest that the combined administration of cannabinoids with other anticancer drugs acts synergistically to reduce tumour growth." Current Oncology went as far as to quote the necessity for further research:"Cannabinoids induce tumour cell death and inhibit tumour angiogenesis and invasion in animal models of cancer, and there are indications that they act similarly in patients with glioblastoma. Given that cannabinoids show an acceptable safety profile, clinical trials testing them as single drugs or, ideally, in combination therapies in glioblastoma and other types of cancer are both warranted and urgently needed" (Vol. 23, Supp. 2, March 2016).

I will say I am not a huge believer in many holistic/naturopathic methods myself, with the exception of cannabis. Would I ever tell anyone that it would cure their cancer? Absolutely not. But if someone asked for my advice as to whether they should take narcotics or try cannabis, I'd likely endorse cannabis. I can only speak from personal experience and from my own personal research. When a peer reviewed, scholarly oncology publication, notes its many medicinal and therapeutic uses plus speaks of its potential role in apoptosis in cancer cells (programmed cell death) then I think I'll keep on taking my cannabis oil, experience euphoria, and take my chances. This disease takes and takes and takes...if there's one thing that can, at the very least, improve a patient's quality of life, then I think for that very reason alone we should improve accessibility, offer clinical trials, and educate physicians about the medicinal potential of this plant.

          This was the actual advertisement for our panel discussion/public forum          

The following were a few pics from the actual panel discussion/forum

 Marcus Richardson..AKA "Bubbleman."Can't thank him enough for sharing his knowledge base around cannabis!

Me trying to spread the word at Princess Margaret on the MBC Project, and handing out pamphlets for them to distribute!

 Some randomness at the CN Tower...I'm apparently half the size according to this illustration, lol

 The view from the top of the CN Tower!

We even managed to check out a Toronto Blue Jays game...the only time my hubby would adhere to matching attire:)

We even got to experience Niagara Falls and it was beautifully breathtaking!