If Im being completely honest...
I have a lot to say. This week has been tough and I am not sure that I have made it completely clear or obvious just how hard it has been on me - for many reasons. The circles that go around in my head are pretty overwhelming and confusing at times. It's a battle. A battle of guilt for not being positive all the time, a battle of put a smile on your face and pretend everything is ok because I don't want anyone feeling bad for me, and then a battle of these horrible dark thoughts that I have convinced myself are probably pretty normal.
I don't like to acknowledge or admit or even say it out loud that metastatic breast cancer is essentially a terminal diagnosis. Im 38. How the hell did I get diagnosed with a diagnosis that has no cure? Lucky me. I don't know if getting these thoughts out of my head will make them go away. I feel like there is this little apartment in my brain that is cluttered with junk. While everyone else is busy decluttering their closets, this is my attempt to declutter my brain. Its also my attempt to be honest because I cannot imagine I am the only person with this diagnosis that feels this way. Before you continue reading, I am going to warn you that this may not be an easy read. Specifically for those that are very close to me, but I am going to preface this with letting you know this isn't going to be the butterflies and rainbows of blog posts.
So here goes - and my plan is to just filter through these thoughts as they come out so please excuse the randomness that might ensue.
I am scared. I’ve mentioned that before but I’m really freaking scared. I am scared that if my current treatment isn't working, that I will be left with options of clinical trials which really just makes me a statistical lab rat followed by endless dr appts, scans, bloodwork, etc. Fact of the matter is, I am already there. Im a human pin cushion - to the point that I now have to count to 10, 3 times a week, and inject myself with a shot in my stomach to boost my white blood cells (WBC). Currently my treatments are on Mondays and each Monday we sit there, with this super conflicting uncomfortable feeling of..."Well, I hope I can get chemo today". Meanwhile, the majority of the world is just hoping they can survive their usual case of the Mondays after the weekend. I mean, who HOPES they can get chemo and feel like shit for 5 days after? Apparently....my husband and I do...because if I can't - then what? Then the cancer grows?
I can’t do much of anything I used to do before. My BFF was in town this weekend and while it was awesome to just chill and watch TV, talk, decorate cookies, and hang out...at one point I wanted the old me to jump off the couch, bust out some old school 90's, and in Jen fashion...moon walk, Roger rabbit, running man, and display my best attempt at possibly twerking. Because if you know me well...you know thats a "Jen thing" to do. My back pain, on top of my WBC shots, on top of my chemo side effects...just don't let me do that. Last night I went to bed...I couldn't sleep knowing I had to take my best friend to the airport in the morning. The ugly thoughts wouldn't stop. When I dropped her off, I said what I had been thinking about all night and what kept me up until 3AM. I didn’t want to say it but I did. "I hope this isn't the last time I see you". I wondered if she felt the same but in true Heather, always optimistic fashion, she replied with “you will”. We cried and hugged - and neither of us wanted to let go. I’m not sure I’ve ever hugged my best friend of almost 20 years that long and hard. We looked at each other, attempted to laugh at ourselves for crying, hugged again...and that was it. I love you bestie, and even though I struggle to accept that maybe our crazy shenanigans may be limited, we adjusted well by decorating ridiculous llama cookies together. I’m not ashamed to admit - we even named them and I may have discovered a new way of meditating through art.
As far as my family goes...I feel like a complete burden. I feel like everyone is putting their normal life on hold for me. I don't like that. I want normalcy but the fact of the matter is...this isn't normal. Life isn't normal right now and I wonder if it ever will be again. I don't feel like a wife or a mother. I feel like a cancer patient. I cant keep up with simple daily tasks and while my husband has been more than amazing...the roles he has absorbed, that were once mine, are what made me feel like I was a contributing member of my family. Now Im just proud of myself if I can pick up the clothes off the bathroom floor and put them in the hamper. I’m not lazy, I’m just in pain.
I have anxiety. Bad. Who wouldn't in this situation? Anxiety makes me shut down. It makes me quiet. It makes me feel crazy. It spirals in to depression and guilt and all kinds of other sometimes irrational thoughts. At times, I’d be happier if I was just completely alone because then I wouldn't feel like Im such a burden. At times, I just want to be left alone in my own thoughts. I don't want to talk about it. I don't want to acknowledge it. I want to pretend none of it is even happening. But it is...and thats when I shut down. I am really doing my best this time around to not do that. Losing my ability to work out doesn't help my cause one bit. It was always my escape, my reminder that I was healthy enough to be on my bike, or strong enough to lift weights. I cant do that right now, and Im not sure I'll ever be able to again. That scares me. The thought of not being able to travel and hike, or walk up a mountain, or sit on an airplane for an extended period of time...it all scares me.
What scares me and hurts me the most is something I really don't even want to say but if Im being completely honest here...Im gonna say it. I want my husband to be happy and live a life that is fulfilling and full of love and I want to be that person to him forever. Id be lying if I didn't say it kills me that there's a chance I may not be. Of course I would want him to move on...but he's MY MAN. He's MY HUSBAND and I love him more than anything. I love his (our) kids more than anything. I want to see them graduate and be a grandma. I want to grow old with him, and travel with him, and be the one who loves him the way we were meant to love each other till death do us part. The reality in my head is that till death do us part...could come much sooner than either of us ever imagined it would.
I don't want to question every time someone comes to visit me if it's the last time I will see them. I don't want to wonder if my niece and nephew are going to remember who their aunt is. I don't want my parents to have to worry or even think about losing their daughter to cancer. I don't want to hope that I can get chemo on Mondays. I don't want to wonder if I will ever have hair again. I don't want to wonder if the headache Im waking up with is a tumor growing on my brain.
I want to live my life the way I had been living it since I completed treatment for my first diagnosis. I want to be the mother and wife I was 6 months ago. I want to continue to help other women who are probably feeling much like I do right now and my plan is to do that forever. I want to surf again. I want to sit on a beach with flamingos. I want to dance. I just want to be Jen again. I live a very blessed life - the life I always dreamt of. No matter what happens...I need to find grace, patience, and most of all...I need to find gratitude in the life that I have lived and am living. I’m not dead, and no one has told me I am. I’m just limited and it’s frustrating.
I don't want you to feel bad for me. I really don't. That is not the purpose in this post. To be frank...this post was for me. This post is filled with the hope that I could get this out of my head and maybe move on from it a bit. Maybe a little bit of this post was filled with the hope that as you're reading it - you might just close your eyes, take a deep breath, scan your body from head to toe, be grateful for your health, don't sweat the small stuff, and acknowledge all of the blessings that surround you. That's what I want from you right now. Just do that...that is what would make me happy today.
1/13/2019 02:40:29 pm
You are an inspiration in so many ways. You inspire me when you are sick, when you are well, when you are down, and when you are happy. I’m so glad that you are the type of person that can get your thoughts down on paper because selfishly I always benefit from what’s in your head. Just know...I am here. I’m sorry you have to post this but glad you have this outlet. Keep living your best life no matter what that looks like!
1/13/2019 08:28:17 pm
A beautiful well written description of how many people feel at this stage of their lives
1/22/2019 11:37:42 am
Thank you for writing this. I’m always thinking & praying for you and checking to see how you are doing. You inspire me to fully live everyday. Life is such a crazy journey and I pray that your life gets easier and that it’s full of all the things you long to do but can’t right now! Sharing ones thoughts can be so difficult for some and you do it so well! My few lines took my over an hour😂 thanks for being real and raw! Love to you!! Carrie Rosas
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