I think back to this day three years ago, and realize how much has happened in the past three years. How many, if not most, of those days were good, fulfilling, and not plagued by this disease. I also think back to all the things this stupid disease has taken from me...my ability to have children...my career...and quite simply put every ounce of innocence I ever had left in me. For all of us with cancer we can no longer get a cough or an ache without analyzing every single aspect of what may be causing it, the duration that it has lasted for, and without our minds instantly going to that one dark place: cancer progression...and one step closer to death. I so longed for those days where I could have an ache or pain that would simply go unnoticed, left in the back of my mind, where it remained a completely innocent nuisance.
I would love for people who DON'T have MBC to understand that simply staying alive is essentially a full time job; constantly trying to balance and keep the cancer at bay, while also trying to manage the toxicities caused by chemo and targeted therapies. At this point, I feel these drugs accumulate quicker and quicker leading to toxicity faster and faster which then leads to feeling generally crappy. After the news of my great results, I was also told to stop both Lapatinb (Tykerb) & Capecitabine (Xeloda) for a couple weeks to allow things to settle down a bit. My hands and feet are swelling like crazy, and I feel like a good portion of the skin on my feet has come off. Don't worry I'll omit the ugly feet pics in this post;). Yes, it's painful to walk and use my hands. They kind of look like acid burns, and I mean chemo is toxic, and this is one of those common, crappy side effects. Secondly, the targeted therapy Lap, has seriously pissed off my GI system. I have been waking up at 3 and 4am with awful abdominal cramps!! I HATE anything waking me up, but pain tops the list of piss off ways to be awoken. Obviously, there's always the option to switch treatments to better manage quality of life, but I can't bring myself to do this when this combo is working so phenomenally well!! This line has lasted me longer then the very first line of therapy I was on which makes me very happy as the farther along you go with treatments the less likely the next one will work as long. If I switched treatments this line of therapy would still be an option I could go back to as I wouldn't have technically "failed" it, but like I said above, I don't want to jinx myself, especially knowing the few options available for brain mets and right now my brain is super chill (I think my brain has become permanently stoned, along with the cancer cells...they've become VERY lazy and that makes me ecstatic:)).
Looking back at this day three years ago I never could have imagined then how these last few years have evolved and unfolded. That day my world came to a screeching halt and my future was no longer guaranteed. I was 28 and told I was terminal but that we could still get "years" as I only had it in my bones at that moment. Fast forward four months and I learnt it was in my brain. Suddenly, I knew this was one of the worst places for it to spread to and I wondered if those "years" would suddenly start to dwindle down. Then as the months went on and I started on Cape and Lap and scan after scan continued to show improvement, I slowly started to realize that I wasn't dying anytime soon!!
Watching so many of my beautiful friends deteriorate, progress rapidly going from no evidence of disease to death within months keeps me focused on the reality and nature of this disease. It makes me question WHY I have been so lucky to last this long, while others have not. Because of this I have dedicated my life to advocacy. For as long as I am humanly able to I refuse to stop until we make this disease better for those going through it, having equity in care for EVERYONE going through this, and ensuring nobody ever feels alone and isolated because of it. Life can be, and is, more fulfilling for me today then it ever was pre-cancer.
Three years ago today I was lost, completely broken, and felt as though my life was already over. Watching others laugh and live carefree upset me because I just couldn't fathom why this had to become MY life, despite "doing everything right." Today, I am here to say that I am happy, grateful, and feel far from broken. Despite the diagnosis, the hardships, the pain, the losses (by far the hardest component), the never ending meds, GI issues, nausea, diarrhea, HFS, and scans; I'm alive...I am deeply loved...I have a perfect family...I have remarkably supportive friends...and I still have the ability to be a productive member of society through advocacy for MBC. Life may get crazy, and I know this treatment will eventually fail me, but TODAY it's still effective and I don't need to go there and worry about it. I'd have to say my life is truly beautifully imperfect and I wouldn't ask for anything more...except for a cure for cancer...that's when life would be perfect in every way imaginable, but until then beautifully imperfect works for me.