Another beautiful opportunity for you to learn a lesson from my life that I am genuinely trying my best at (most of the time)..
If you were to rewind back to May of 2014, you would have found me starting my first go at Tamoxifen, a hormone therapy drug that I was supposed to take for up to 10 years, in hopes of keep my estrogen levels low and the chance of cancer returning even lower. I could not wait to start. As it turns out though, combining starting survivorship, reentering normal life and screwing with your hormones isn't the most fun a girl can have. It started out really challenging, reached a somewhat manageable point, and then all came crashing down on me. I suffered as silently as I could through the fall but by December, after weeks where I would sometimes go up to 3 days without sleeping a wink, crying for 4 days straight over NOTHING (one time it was about the Bering Strait. No JK.), hot flashes and a hoo-haw damaged so badly that things like sitting and walking were very painful, I finally asked for help. "Help" came in the form of an antidepressant that was all wrong for me, and I became the farthest thing from Kayla. While trying to give it the full 3 week adjustment period try, I made some very poor life choices, hid from friends and family, and even went as far as trying to convince medical professionals that I should be admitted into a mental hospital in fear of just how far I'd feel myself slip away (turns out I didn't fit any of the criteria to be admitted, yet because it was Christmas time I also would have to wait until the new year to receive any attention).
So I made the decision that if the usual help wasn't available for me, I'd have to just help myself. That was the first time in my life where I think I truly decided that I wanted to live. For me, there has always been a difference between doing things to stay alive and deciding to live. This was a decision-to-live moment and that was the day I went cold turkey off the anti-depressant and the hormone therapy. (Note: This is not advisable for the majority and not the lesson I am offering here.) What followed was beautiful. I eventually got off the couch, my laughter grew more genuine, my thoughts became clearer, I found real enjoyment, I slept without medication, an interest in sex returned, "normal" seemed nearby... And for the first time since May 2013, I started to find myself again.
With a returned joy for life, I was able to think long-term once again. For months I think that I would have been fine with cancer returning. That's really fudged up. But I think it's pretty true. It's not like I wanted to suffer again but I didn't care to live either. Those days were somehow behind me though and everything felt lighter and better and my life was a real gift once again. And not just a gift for those around me but for myself too. I fell madly in love with my friends and my family and a wonderful man (Jeff) and an incredible woman (me) and I wanted to do everything in my power to be around for all of them. I wanted to be around for my family, to see my friends continue to make me proud, to have adventures with the babe-a-rama I'm lucky to call my boyfriend, to raise a family and to grow old, saggy and gross.
The best way I knew how to do that was to make certain dietary and lifestyle choices and return to Tamoxifen.
My previous medical team was nothing short of amazing and I am forever grateful. But here's a lesson for y'all... When someone tells you you have to do something, even if it greatly alters your quality of life in a negative way, YOU DON'T HAVE TO DO IT. Desperate for someone to tell me that being off of Tamoxifen was ok, I finally came clean to my cousin who is a top-dog oncologist at Dana Farber in Boston. Her response was not what I wanted, and without much coaxing, we decided to switch my care out to Dana Farber, placing me in the hands of the doctor you'd consider the "expert" for YA with breast cancer. Hence my recent Boston visit. We won't be moving to Boston, but from now on we will be commuting there for care.
Sometimes "good" care isn't good enough. When you're a unique case, you need the best. My new medical team is GREAT. Love them, felt very empowered, informed and confident that I was in the best of hands. I especially liked the way my doctor sat right next to me and affectionately rubbed my arm or called me "a baby".. it was very maternal and I noticed how much she really cared. Our final plan though included trying Tamoxifen again, this time we only had to give it "the college try" (3 weeks) before deciding to continue or not. Since last December, another option has come out for younger women with the kind of breast cancer I had, so she said if Tamoxifen didn't work again we'd try something else. And suddenly I couldn't wait to give it another go. Couldn't wait to do everything I could to get more of this whole wonderful life thing!
3 weeks later...
Day one was spent in bed. Day two was spent on the edge of a breakdown, quite nauseous with hot flashes. Day three began with tears that became sobs that threw all logical thoughts out the window. After a hysterical shower, I realized no one was home so I desperately tried calling anyone who would listen and just let me cry to them... My dad reminded me that it was probably the medication and that I needed to let my doctor know right away. I felt super guilty not being able to do this again. Like I had failed. Like I was letting people down. But my father's words reminded me that one pill wasn't going to be the deciding factor as to whether or not I would live a long and happy life.
"What good would this life be anyways if you spent it in tears all the time?"
I left my doctor a message relaying what was up, my boyfriend returned and after discussing it with him and my parents, we decided that it was gonna be OK if I stopped and they helped me not feel as thought it was a failure on my part. We all decided that consulting my doctor immediately was the best move. Jeff assured me that it would also be ok if I had to continue on it too. We'd figure it out.
Things are a lot less scary when you have someone else by your side.
Within minutes she responded to stop the meds immediately. If I could do a back-flip I would have. We'll go in for another visit soon and discuss another option, which included ovarian suppression and endocrine therapy.
I know nothing about this yet, no more details, so save your questions or google it? This is all the information I have. I was hesitant to share, like I have been recently, because the influence of outside opions sometimes really get into my head. Like the guilt I felt. I'm not going to feel guilty though about choosing quality of life over quantity of days. This will be much more enjoyable for everyone if Kayla is Kayla.
So I guess my lessons for everyone are to avoid settling for a life someone tells you you should be living, ignoring of how it feels to you. I've been way too guilty of this move in the past and that's just not a mistake you make when you realize what a lucky dog you are for getting a second chance. Seek alternative options and opinions, and make decisions with people who consider what you're saying while REALLY LISTENING TO YOU. Be an advocate for yourself. Seek those with your best interests at heart. And hell, if you're lucky enough to have a life, enjoy it. Whatever that means to you.
I feel a little rusty at this whole blogging thing. Guess it was more of an update than a lesson. Anyone want a free three months of Tamoxifen though?
Christmas is coming, have a beer. Cheers.