Sunday, 24 July 2016

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, 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 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 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...