Thursday, 24 December 2015

When Will Society Hear Us??

It has been a while since I've wrote an update on here, so thought this would be a good time as quite a lot has happened in these past few weeks. Things have been relatively good the last little while minus the hand/foot syndrome bit (HFS). I also just had scans. Firstly, scans around Christmas time are always so stressful. The thing with this disease is you truly never do know what it's doing inside your body and the type of havoc it's wreaking!!

As many may know I had my PET scan and brain MRI and I am happy to report the results were beyond amazing!!! The brain mets are no longer visible on MRI with no new lesions noted...AKA: thank friggin goodness my brain gets a cancer break. BIG thumbs up for this one! Then the mets to my clavicle, hip and sternum essentially showed low to NO metabolic activity on the PET scan!!! My spine hasn't even been mentioned, meaning it's completely gone from there too!!! This news left me completely elated because this is essentially the closest I have gotten to NED (No evidence of disease) since being diagnosed metastatic. My hubby and I couldn't have been happier. As we left the appointment we both sighed a collective sense of relief knowing I could enjoy the Christmas holidays without worrying about different treatment options, side effects, or worse having to have the difficult conversation about end of life. We both realized how truly stressed we were going into this appointment as we felt a huge weight was lifted off our shoulders after hearing the results.

We spread the news to our friends and family with as much excitement as when we announced our engagement, but this excitement exuded a sense of overwhelming relief and peace with the knowledge that today, things were ok. That's all we wanted for Christmas was to be ok; health wise. The meds I'm on are no doubt working as evidenced by my most recent scans, but this also comes at a price. Now don't get me wrong, as it is a small price to pay, but on some days these side effects get to me. The skin toxicity caused by Xeloda has forced me to take an extra week off so that my hands and feet can recover as the HFS became so severe that walking became near next to impossible without having severe pain. Half my toes are sprouting blisters and six of my fingers have simply split open. I was told that I could super glue my fingers back together. When I asked where I would get this medical super glue I was told; Home Depot. Hmmm...I kind of felt like my health care is spanning to hardware stores now!! First, I thought I needed to go to a vet to get udder cream for my hands and feet and now this??!!! Plus, a not so lovely side effect of Tykerb are peronychial infections which basically occur around the skins of your toes. So now I have multiple infected looking toes too with one great toenail completely separating and lifting up down to the cuticle. So now I'm applying approximately 8-10 bandaids on numerous fingers and toes, twice a day, with the clindamycin ointment and topical steroid. Yes, I am flying through band aids like it's going out of style...heck, I wished for bandaids this Christmas as my stocking stuffer, and the sad part is this would truly make me happy!!! Oh, how my life has changed. If the topical antibiotics don't cut it then I'm on oral antibiotics for 3weeks so here's hoping the topicals work well!!!

After we left our appointment we made plans to head to Banff the next day to relax and celebrate the great news. When I thought the day couldn't get any better I was shocked and saddened to hear that a fellow metster had passed away. We had messaged each other back and forth and realized our close age, stage IV diagnosis, and that even our oncs were the same! I finally had the pleasure of meeting her 3 short weeks ago as I waited for my oncology appointment. We talked, hugged, and wished each other the best. Never would I have thought that that would be the last time I ever saw her again. How could this happen?? How was it that just under 3weeks ago her scans were looking better and she was optimistic things would least a little while longer?? I was speechless and beyond heartbroken for not only her husband but her 2 year old son. A baby needs his mother. This news simply reiterated the nature of this beast we call cancer. It does not discriminate. Doesn't matter your age or what a lovely person you may be. And sadly it doesn't care if you have babies that are relying on you to be there for them. Cancer makes our lives grossly unpredictable, but leaves us holding onto any sliver of hope to allow us to believe that our mortality isn't truly as close as it appears in reality. You see. a fellow metster once explained this and now it resonates with me more than ever. The scans we receive every three months aren't an indicator of our health for the next three months, as in an insurance that we'll get by these three months. Rather, it simply solidifies that the PAST three months were good. That's the scary part of cancer....there is NEVER going to be a guarantee. If I manage to completely enter into the mystical and magical land of NED, even then I won't know if it'll last a year, a month, or a couple of weeks. This disease strips us of the ability to plan for a future...we are forced to take each day as it comes. With so many friends entering hospice, dying, and deteriorating as of late it again reiterates the importance of finding the beauty in TODAY. Today is all we can be guaranteed so why not guarantee it to be worth it.

As I finished writing this post four fellow metster friends have died in total in a matter of a few short weeks. Two were 31 and 34 years old and they were both mothers of adorable two year old boys. One was no evidence of disease four short months ago...what happened??!! My other friend I visited in hospice just a couple weeks ago, and I will always cherish that time we had together...she's gone now too. Then, another friend, in her 30s, was just told she likely only has months left...there's nothing more that can be done. See, these are only a few faces and whenever I post these pics people seem shocked by these women's beauty, their relative vibrancy in the photos and people think: this is so very sad and our hearts break for their families, especially when they have young children. However, I don't know if people understand that THOUSANDS of women die every single year. And well over one hundred people die PER DAY from this disease in North America alone!!! Someone told me why dont you take a break from social media so that I'm not exposed to this. In my eyes, this would be an indescribably selfish thing to do. Is it hard to keep watching my friends slip away from the exact same disease that I am inflicted with?? Yes, exponentially hard but you want to know what's harder?? Dying alone and being forgotten. I'm sorry, but as hard as all this is to bear I am not a piece of shit individual who will abandon someone during the most difficult and gut wrenching time of their life. If running and hiding from the problem seems to be the solution that many feel is appropriate then we will never get any closer to a cure. These women's faces and stories NEED to be told. They NEED to be spoken about, so that the world can see that this has become an epidemic. These were simply AMAZING women who have inspired me like no other.  We are dying at such an alarming rate that I can't take this anymore without making some noise, standing up, and becoming the biggest pain in the ass out there!! But what happens when I can no longer keep advocating, and essentially begging for change?? Will anybody else do it for us?? I will sure as shit not let the deaths of these beauties be in vain, and I don't think the world should either. Let's stand together and demand more. One day this could be you, your mother, or your child. Do you have any idea how hard it is for me to watch my mother crying out of fear for her own daughter when she sees my friends dying? I know what she's thinking and I hate that I'm the source of her sadness, or rather the damn cancer is. Would you be ok with this? When will this madness end??!!! None of this is ok, but I will promise every single one of these beautiful women that their memories will never be forgotten. They deserve more. The number of children who no longer have their mothers deserve so much more and up until now we have failed them....failed them miserably. Society as a whole has failed every single one of these women and I am so heartbroken and sorry for this. This needs to END!! Lyndsey, Adrienne, Carolyn, and Regina may you all rest in peace....when will the world hear us and finally HELP us??!!! This should not have been any of their fates, but sadly it was. Hug your loved ones just a little tighter and when you tuck your children in tonight, remember these lovely ladies whose toddlers no longer have what every child deserves: their mother. HELP US. Why are we not worth saving??

Lyndsey, Carolyn, Regina, & Adrienne

Lyndsey...Passed away two days after turning 31. I saw her less than three weeks before her passing. She was optimistic because she finally received better scan results. I was so happy and excited for her that she could enjoy her Christmas...she never lived to see another Christmas. The complete epitome of REAL beauty...She was a kind, compassionate, and beautiful soul who was so dearly loved. She leaves behind her husband and her adorable 2 year old son.

Adrienne...Passed away at the age of 34. Adrienne was such a ray of light. It's easy to see just from these pictures how she exuded such pure joy and happiness...that was Adrienne. Always smiling and hanging onto any sliver of hope. Adrienne was strong. Simply days before her passing, she asked if she could borrow a wheelchair from someone just temporarily until she was back on her feet...sadly, she died not long after. She didn't get to live to see another Christmas. She leaves behind her husband, and also her sweet little boy who was also only 2. He was most definitely the centre of her universe. My heart breaks at the thought of him crying for his mommy. I am so sorry sweet Kellan.

Carolyn...Passed away at the age of 54. Oh sweet Carolyn where do I begin. Carolyn was the epitome of kindness. She was so witty, exceptionally funny, and one of the kindest people I have ever had the privilege of meeting. Carolyn went from having a relatively low burden of disease to the cancer spreading everywhere, ultimately leading to liver failure. Carolyn was so dearly loved and I will cherish our conversations we had when she was in was an undeniably huge privilege to meet her in person. She leaves behind 3 sons, her mother whom she helped care for, these two beautiful grandsons you see in the pic that she adored so much, and Julie; her sister. I feel it's important to speak of the families touched by cancer. Julie stood by her sister through EVERYTHING. Their bond will never be broken because their relationship is something we can only wish for in our own lives. Carolyn was a fierce advocate for the metastatic community. You will NEVER be forgotten.

Regina...Passed away at 51. Regina actually started following my public FB page and we messaged each other regularly to see how the other was doing. Regina also exuded such a strong sense of caring and kindness. She had a low burden of disease in her bones and truly felt that she had many years of living with this disease. Then came the message that I wish never would have been. She informed me that her cancer spread to her heart. Apparently an extremely rare occurrence, however it happened to Regina. Regina had a family and many who loved her as well. Sadly, not long after the cancer progressed she also passed away.

All these lovely women should still be here today, but they're not. It was too late and research did not advance to the rate at which they died. We DON'T have time! I don't know how to communicate the urgency any longer. These were simply four of hundreds of women who die from this disease Every. Single. DAY...they all have names, faces, families, and a purpose. If this doesn't effect you then what will?? What will it take?? When oh when will the lightbulb go off?? I can only hope that it's before another friend dies. Sadly, deaths won't stop for the holidays, children will continue to lose their mothers, and those that knew them will mourn. We will cry. We will curse and continue to ask "why," and the rest of the world will continue to live, unconcerned and unaffected by any of it...until of course they are personally touched by cancer themselves. THIS NEEDS TO CHANGE. Please, please help us!

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