Yesterday we celebrated the life of my beautiful friend. I want my words to Dezare to sit in a place where I can always turn back to them, where anyone can always come back to them, and remember the life she lived and the heart she gave to me. I guess I will start with saying that in the last 24 hours of my life, I have discovered a new level, a new step of grief that I didn’t know existed. Maybe I realized it through the loss of my best friend. Maybe I realized it due to the fact that we weren’t able to celebrate her life until a year later due to COVID. I don’t know. What I do know is that the emotions, thoughts, and feelings I have experienced over the last 24 hours have awakened something that I hadn’t given too much attention too. Sometimes, this blog is a place for me to process and just let my mind say what it’s going to say. So bare with me as my hands and heart work through this.
I struggle to find a word for this stage of grief. I hope as I write this it will manifest itself in to a word.
One year ago, I lost my best friend. Nothing has hit my heart harder than this. I question it, and I feel anger. I feel resentment and I feel confused. I don’t know if it’s because her faith in God was so strong that I question why he took her from us so soon. We all needed her. I know she is still here, but as I process all of this, I think of our memories. When she visits me, because she definitely does, I am thankful. It makes me smile, it makes me sad, but it also makes me incredibly grateful that she chooses to say hi to me when I need her most. Whatever faith you choose to believe in or not believe, I truly believe her faith is what gives me these moments. I am not going to try and explain them or justify them or call them coincidences. They are truly unreal when they happen and it is a deep feeling of joy and disbelief all at the same time.
My interpretation of a celebration of life, is a time to honor the soul that is with God, and we definitely did that. The energy and love in that room was something I have NEVER experienced in my life. In the past I have always seen this as a way to give us, here on earth, some sort of weird closure, for lack of a better term. It’s a moment to step back and share memories with their loved ones and to notice and appreciate the life well-lived, the lives touched by such a sweet and compassionate soul. Closure might be the wrong word but more of a step in the process of grieving that needs to happen to move forward.
Having celebrated this life a year after her passing, it brought back a lot of emotions I think I tried to push away. I think it made me realize how stagnant I have been in my own, personal grieving process. Maybe thats the word, the step. Stagnancy. That’s it. I was, and maybe I am stagnant in my process. I am in a place where I feel stuck in our memories, stuck in the hurt, stuck with the hole in my heart that will never be repaired until we meet again. I am not even sure where this step falls within the “steps of grieving”. I just know it is where I feel I am. Stuck. Maybe it falls before acceptance but I know she is no longer here. I have accepted that but I am stuck in this feeling of how? Why? Why her? Of all people, WHY HER???? Why does God give people cancer? It is a disease of suffering and happens to so many good people. I don’t get it. I know this is probably the hardest lesson of understanding God’s purpose. It is one that I often reflect on in my own journey. I have seen suffering and I fear it. More than anything, I fear that. I also find some sort of odd peace in knowing that when my time comes, she will be right there waiting for me.
I feel stuck in every step of grief right now. I feel stagnant. I feel like I don’t know where my head is at with anything. Maybe it does have something to do with celebrating her a year later and bringing up all of these emotions that I tried to hide for so long, or that I didn’t want to acknowledge because I was focusing so hard on staying positive and believing in a better purpose for her, and for myself. The reality of her no longer being here, is a hard one to accept. The memories we shared, the laughs, the inside jokes, HER laugh, they are all stuck in my head in a little box that I just opened again. Sort of like a jack in the box, spinning around until they all popped out in full force initially jolting my heart, followed with the smiles and laughs behind all of the special times we shared, and then back again. Circles? Confusion.? Why do I still feel so lost? Why do I still feel so…..Stagnant? Will I always be here? Is this the place that grief ends? Is this the step that you never accept because it’s not something that is ever going to change? She’s not coming back. That box of laughs and memories is always going to be in my mind. The whole in my heart is never going to be repaired. It just isn’t. How can it be?
Occasionally I cry knowing I cant just pick up the phone and hear her voice, or text her so I can receive her amazing words of encouragement and this is where I want to share my eulogy with you, forever. I truly hope you continue reading this, because this is us. This is my heart. She is my heart and I never want these words to go away. I want the world to know who Dezare, who Ernie is to me, and who she will always be to me in life, in my journey with cancer.
Dezare - My Collateral Beauty
Collateral beauty means memories, life experiences, actions that tie one person to another owned by 2 people in their mutual experience in life. These two people unconsciously agree that when one parts from this physical earth, this collateral beauty, which has a value and a beauty all its own, becomes solely owned by the physically present. The beauty of that relationship will cause much sadness and grief. However, as healing begins to replace that grief, the beautiful parts of the relationship can be treasured and valued again - for a lifetime. I personally know that I am not healed and that I am still trying to grasp that we are here today but what I do know is that Dezare has shown me so much collateral beauty, inner beauty, and I want to share what that beauty means to me, what she has given to me, and continues to give to me. Dezare, I know you are giving me the strength to do this right now AND
If Im being honest, There is a part of me that hates that it was Cancer that brought us together but I know its you that made this journey a little easier for me and vice versa. I am her Burt, and she is my Ernie. I will not speak in past tense of her because she is here with me, with us, always.
When I was diagnosed in 2013, I hadn’t opened up my heart to connect with anyone because I was afraid. About a year later, I met Dezare at a support group meeting. My hope is that as I read through this you feel the same energy from Dezare, that I felt that day - the same energy she managed to maintain through out her recovery and new diagnosis. Y’all I love Dezare. I love her as much as anyone else in this room today. I miss her but I know, she is here. Today, tomorrow, and always.
I don’t want to get in to the nitty gritty details of the hard moments and hard conversations we had together, they were very few and far between because we always agreed that we would speak healing, hope, and life in to our bodies and our minds. I carry that same attitude with me today - because I know that’s what Ernie would tell me. It is is how I choose to live each and every day, Like Dezare.
1 year after Dezare was re-diagnosed, I was re-diagnosed with stage IV cancer. And though this isn’t about me, it’s important I share this with you and thank her for putting herself aside to be by my side, despite her own diagnosis. She delivered her special tea to my doorstop with little notes on the bottom of the jars that reminded me God was always with me. She called it God Juice. She dropped off little gifts with little stickers on the bottom and my confidence in knowing she is still here, is finding these little gifts at random moments in my life when I need her most. It is typically followed by a picture in my phone that randomly pops up. On the same day, within moments of finding her little messages. These photos remind me of all of the memories we share together. Sometimes, I feel guilt in wishing we spent more time together, or wishing I was there for her in the same capacity she was for me but then I see these photos and I am reminded just how much her and I lean on each other it brings me peace. I still lean on her. I always will.
I cant begin to explain or even comprehend the moments that she visits me. We see what we seek and my heart is so open to welcome her visits and acknowledge her with a simple Oh Hey Ernie! In those moments, I truly stop, and thank God for sending her to me. I am eternally grateful for her continuing to open my eyes towards God and reminding me when I need her most, she is still there - He is still there. When I question my faith in God, I see Dezare and I think of Dezare and I strive to believe like Dezare.
There is nothing that can possibly prepare you for the moment you realize that you may be saying your last earthly goodbye…or see ya later. I say that because I know I will see her again. I feel at peace knowing when my time comes, that girl will be waiting for me with open Ernie arms, with a glass of her special tea, with her unique laugh, and her incredible hugs. Her laugh. Stop and imagine that laugh for a moment. SO beautiful, so distinct, You could walk in to a room, hear that laugh and know that her voice is near. I miss that laugh. Its contagious. Oh how I wish I could pick up the phone and hear her but I know if I take a moment to listen…its there…in my heart forever. Just listen. You will hear it too, I promise.
I believe me and Dezare share the same soul. The same love and zest for life. The same appreciation of having the windows down, the music off, and simply listening to the birds sing. It’s what connects us. I still stop to hear the birds and the wind, for her - and for me. It’s those little moments that bring her and I joy. The simple ones. Her family is my family. Her family is everyone in this rooms family and that’s the beauty of who Dezare is. That is the collateral beauty she gives to us all. To me. Her soul and legacy will live inside of so many hearts forever and that is what gives me peace.
What I know Dezare wants most for all of us is to not cry but to keep living life, laughing, taking and breathing in the simplicity that surrounds us all. She wants us to remember a life well-lived; well loved, to live with that same intention and with our hands towards god. It is the best gift we can continue to give to her and her spirit here on earth. Ernie I promise to live this life with no regrets, with hope, with healing in mind and I will do everything I can to honor you, and the holy spirit daily. I will speak your life in to my life for as long as I am blessed to do so. You are not forgotten - you are here - I see you. A piece of my heart, my soul; and sometimes I want to even say my faith went with you. Sometimes I am mad at God for taking you but he needed you and in time, I hope to understand why. I know there is a greater purpose and I will choose to believe that your laugh, your heart, your healing, are allowing you to dance In the skies and protect us all with your Angel eyes. You are my flock of birds. You are my wind. You are my inspiration. You are my heart, my joy, my friend, and my Angel. Keep sending me your little whispers, I love them. I love you. I miss you and when I feel that pain in my heart, I promise to lean in to God and my faith, knowing thats what you want for me, for all of us. I love you dear Ernie - from your Burt down below - always. You are everywhere. You are my collateral beauty. You are OUR collateral beauty Dezare.
I carry your heart with me. I carry it in my heart. I am never without it. Anywhere I go, you go. Here is the deepest secret nobody knows. Here is the root of the root and the bud of the bud and the sky of the sky of a tree called life - which grows higher than soul could hope or mind can hide.
You, Ernie. You grow higher and higher and you give my soul hope and life and my mind, everything in my being will strive to live like you.
I carry your heart. I carry it in my heart. Forever.
How do you turn the light on a terminal cancer diagnosis? How does it change you? Pen, heart, and paper, meet my shadows and my light.
I have many different answers to this question. I have this conversation regularly and it’s a tough topic because of the word “terminal” or “incurable”. I typically only share my feelings about this with people I love because its that hard. Its not something I enjoy talking about but when I remind myself what the purpose of this blog is, I remind myself its important to share the deepest parts of my mind and this diagnosis in order for it to serve its purpose. Putting my “pen to this paper”, or my “fingers to this keyboard” serves as my outlet to share the light but also share the darkness too. I have to let the shadows speak just as loud as the light does because I know I am not the only one; and so I write for so many of us who might be feeling this way.
I want to lead with this: I don’t expect everyone who reads this to live their life differently or with the perspective that I have and I don’t judge you for living in your unpopped bubble. The fact of the matter is, my bubble was popped 7 years ago and just when I thought it was safe to enter it again, I was quickly reminded that my life and purpose is not meant to fit inside of a bubble.
When I say my bubble has been popped, I’m referring to the one that you might occasionally sit in that says, “Oh, that would never happen to me. I’m a good person, I do good things, I love hard, God would never do that to me.” Trust me, I had that conversation with myself many times in life when I felt fear. As you read that, do you think that I deserved or that God chose to give me a terminal cancer diagnosis because I did something wrong in life? Probably not, but here I am. At times, I ask myself why did this happen to me. What did I do to deserve this? Those are questions I bet many people ask in life when traumatic events happen. Imagine that traumatic event happening over and over and over again. Thats what a terminal diagnosis feels like. Every morning I wake up to the same traumatic feeling. I wake up and I still have terminal cancer. It’s not going anywhere for the time being or until they find my magical cure. I have to tell myself, “I’m not gonna die today - so let’s make the best of it”. Every morning - the same trauma. Every morning, my house is still burning. Every morning, I get in a massive car accident. Every morning, someone breaks in to my house and points a gun at me. Trauma is trauma.
Here are my ghosts: I’ve planned my funeral more times that I want to admit. I’ve thought of the things I want to leave in the minds of those I love. I think of the last moments I’ve shared with people, and I wonder if I’d leave them with knowing how much I love them. I think of all of the things I want to do in life, and I make sure that I do them, or I try my very best. I have a lot of WHAT IF moments, a lot of tearful moments as these thoughts travel in and out of my mind. It’s hard to bring myself back from those thoughts but I eventually find my way. It’s a scary place to be, but for me, it’s also a harsh reality. I live my life in 3 month increments. I have no control whats happening inside of my body, and I fear it. I fear the moment I walk in to my Dr’s office and she tells me there is nothing else we can do and you have this much time left.
Wow, that was really hard to write, but this is my “pen to paper” moment. These are my raw thoughts and feelings. I have to honor them so here it goes.
I struggle between living my life to the fullest and being depressed in my bed. I struggle between wanting my friends and family to treat me like I’m “normal” but also wanting them to realize my time may be limited. I struggle with people telling me their problems and being the loving, full of advice friend and wanting to say, “really, thats what you’re going to complain about today, try having tumors in your back and facing your mortality every single day”. All of that being said, I ALWAYS come back to this: I don’t want to be treated like a sick cancer patient. I don’t want anyone to walk on egg shells for me, or not share their heart with me because they “feel bad” complaining to me. Those are the parts of me and my relationships that make me feel “normal”.
Everyone has a gauge for what they’re able to handle. I am not here to tell you your problems are less important than mine. I am here to share my journey and my heart with you. I am here to speak for those who might be too afraid to share their feelings. I am here to speak on behalf of those who may not even understand what or why certain thoughts consume them. I am sharing the darkness to hopefully give a little bit of light to those who might otherwise feel alone. Cancer is a lonely place. When you’re surrounded by the majority of people who don’t understand what it is you’re feeling, it can feel like you’re being suffocated. While everyone around you goes about their lives, we feel like we are standing still in a world that just keeps spinning around us. It’s a brain that never stops thinking, full of anxiety, playing tug of war with staying positive and feeling depressed. Sometimes I feel guilty for feeling sad, like I’m wasting valuable time or like my depression is feeding my tumors, but then also knowing it’s important to give myself the space to process those feelings. Sometimes I feel guilty or as if I am being judged for living my life, traveling, and experiencing all of the things this life has to offer. As I watch others dying from this awful disease, I teeter between having survivors guilt and wondering when my time will come—what will that look like. What will my family and friends have to see? Will it be quick? What will I look like? Most importantly, what legacy am I leaving here?
Apparently, God thought I was a freaking super hero because as I write this, I have no flipping idea how I get through a day. I mean, I do. I know he is there to catch me when I fall. I know he knows my heart, and I trust in his plan and purpose for me. I remind myself this is the path he wanted me to walk. Whether it’s because I was meant to be the hands here on earth that serve others through Pink Warrior Advocates, this blog, or if it’s to teach me how to truly appreciate and make the best out of this life—I don’t know. I just know this is where I am at in life and I have to accept it. I have to embrace it. I have to believe healing is happening inside of me both mentally AND physically. I have to choose hope—every. single. day.
I will end with this…
One might look at me, or any cancer patient, and feel bad for us. I am asking you not to. At least not for me. I don’t want you to feel bad for me. I don’t want that attention on me, personally. The best thing you can do, is live a purposeful life full of forgiveness, faith, belief, hope, and ADVENTURE!!!! Eliminate every opportunity of regret that you can. Leave people with words of love so that you never have to feel pain wishing you had said that one thing you fought yourself to say. Get rid of your pride. It serves no purpose here. Do that ONE thing you have always wanted to do. I may have been diagnosed with a terminal illness but the beauty behind that, is that I have been given the privilege to live fully and without regret. With this diagnosis, I feel as though I have been oddly given this “time” or this insane “reality” to choose what my legacy is. I’ve said it before and I will say it again: We are all terminal. No one is getting out of this world alive. Not you, not me. I might have this thing that says I have statistically this much time, which I can choose to see as a blessing or a curse. I choose to see it as a blessing because I can promise you, my life would have looked much different—my time with friends and family wouldn’t have been cherished as much as it has been. I never would have jumped out of a plane, or done half of the other things I ALWAYS wanted to do. I have a never-ending bucket list because it gives me something to look forward too—to live for. I think and feel at such a deeper level than I ever have in my entire life. So while some of this may have been hard to read and equally as hard to write, the truth of the matter is, this is my heart. This is my purpose. This is my truth. This is my life. It’s a life I will continue to live, feel, process, believe, hope, love, honor, and be grateful for. Read that last sentence again but read it slower.
I will scream and I will cry again, I will ask God “why me again”, I will stand in this spinning room alone while the world floats around me in their bubble. I’m ok with that. I’m at peace with that. At the end of the day, I have been so dang blessed. I am surrounded by love and prayer. I have the some pretty incredible
people to share this life with, and to share in those bucket lists moments with, and that is something I will never….EVER…take for granted.
These are my ghosts and as long as I bring light to them... and share my truth... I might just light a path for someone who can’t.
“What if I leave the light on
So the dark has a friend
If the ghost light is burning
We'll invite something in
Let the dark free her secrets
That she keeps swallowing
Let her borrow my voice now
What if darkness could sing
What would the dark say if she could” (Sara Bareilles)
She would say all the things that sit on her heart, on her mind, so the world could see the shadows, the light, the fears, the darkness, but find hope and inspiration in the midst of it all. She would offer her voice to those who are too afraid to share it. She is me, and this is my “heart on paper”.
I've been asked to write about "trauma" and the topic has been on my mind since. There are so many different angles to this topic and I am not even sure that its something I can completely summarize in one blog post. I say that because, for me, traumatic moments seem to have happened regularly since I was originally diagnosed in 2013. The most prominent have been, obviously, my diagnosis...but even more difficult than that : Death. I'm not entirely sure I want this entire post to be about that but I do want to talk about it.
The majority of us have experienced death or trauma in some form. Death doesn't always mean, SOMEONE or SOMETHING dies, but the end result will most likely always be grief. To me, trauma is a situation or event that has happened in our lives that has the ability to completely change the way we view life, or the way our brain processes, what most might comprehend as "normal circumstances". In all honesty, I feel like trauma and death can go hand in hand. I have experienced both more times than I would like to admit or accept.
I am not sure how many 40 year olds can say that they have consistently lost 3-4 friends a year. The amount of hands I have held in the last 24 hours of life is a number I'd like to forget. With each beautiful heart, a little piece of me dies. Every. Single. Time. This part of my life is one I consider extremely traumatic. Losing a loved one, is one of the most heart-wrenching, traumatic events I think we, as humans, experience. It truly does feel like a piece of your heart goes along with them. It's so easy to question every thing you did or didn't do, what you did or didn't say, and if you had just done that ONE THING differently. We grieve, we question, we accept, and we learn to live a life without that person’s physical presence.
That’s death in its most raw and obvious form—death of someone or something—but I’m not just talking about that kind of death. It can be in the form of a divorce, loss of a job, your home, your health, a friendship... I feel whatever brings a feeling of pain and feels like it breaks you to your core, can be classified as a traumatic experience or a death of some form. How we cope as individuals is a personal choice and my position as I blog is not to tell you how I think you should move through it. It is simply to share my experience, my thoughts, and my perspective with you.
In my experience with trauma, I feel as though a little piece of me has died with each traumatic experience I have had. I have grieved the loss of myself through those experiences. I've learned that this is such an important part of trauma. Why, though? My answer is this: Trying to hold on to the person you were prior to your trauma is like holding a broken glass and hoping its gonna look exactly the same when you put it back together. I have learned to accept, for me, that it is not possible to do that, so I grieve and I allow myself to grieve. I give myself that space, time, and patience to move through it and to come to a place of acceptance. With each trauma, with each death, a little piece of me dies. Does it mean I am broken? Absolutely not. I can't change what has happened, and I have learned that coming to a place of acceptance is where the healing truly begins. Accepting that the glass is broken, but you are not. You can still be put back together, and you can still thrive and find the beauty in life and within—beyond that trauma.
Acceptance has been a word that I have returned to often this year. I accept that I have stage IV cancer. I accept the moments I have sat in front of a doctor to be told treatment isn't working anymore. I accept that I lost my breasts. I accept that my life looks much different than the lives of most people my age. I accept that I have and I will continue to lose friends because of what I choose to do as my life purpose. I accept that we live in a really messed up world right now and there isn't one ounce of normalcy about it. I accept that all of these moments have happened.I cannot change them, and I accept that. Most importantly, I accept that I will likely continue to lose little pieces of me with each piece of trauma that falls upon me. I acknowledge and internally verbalize that it doesn't mean I am broken. It just means that I may look a little different each time my glass is put pack together. I have learned to be at peace with that. It is how I choose to handle my trauma.
Life is full of peaks and valleys. From experience, I know how hard it is to climb out of the valley, how traumatic that valley might feel in the moment. I know how hard it can seem to envision the view from that peak you so badly want to climb. Getting there means work and it might mean you come out with bruises and scars. It might mean that you're leaving a little piece of you in that valley and THAT'S OKAY!!!! You are still you. Your heart is still your heart. Maybe you choose to love a little harder. Maybe you choose to take that extra 10 minutes instead of rushing time away. Maybe you choose to forgive a little easier. Maybe the impact of your trauma is meant to transition you in a way that forces you to love a little harder. Maybe it forces you to re-evaluate your priorities and what brings you happiness.
As I have personally navigated trauma, loss, death, and everything in between, I have discovered new pieces of me that I personally choose to give attention to and work on. There is absolutely NO time limit on healing from a death or a traumatic experience. You owe yourself kindness and patience as you move through it. As we learn to accept what has happened and what our "new glass" looks like, I truly feel it is when we begin to heal ourselves. I truly believe it is when we begin to discover who we truly are. Give yourself permission to forgive you! Give yourself permission to heal you! Give yourself permission to accept you might be a new you!
There is so much beauty behind it all, and what an incredible gift it is to give yourself. Whatever it is that is making you feel broken in this moment, whatever trauma you might be experiencing, I hope you can take a moment to pick up the pieces, put yourself back together, and accept that this life is so far beyond our control—and that you are never fully broken. Even if those little tiny shards are impossible to find, the beauty can simply be in the light that shines in them, the light that shines within you, and the light and love that was left inside of your heart through them.
I want to capture a moment while I’m in it and what better way than to write about it?
I have treatment today. For now, in this moment, treatment means 8 pills a day for one week on and one week off. It also means driving 45 minutes one way once a month for a bone infusion and a shot in my stomach to shut down my ovaries. Shutting down my ovaries has meant menopause since the age of 38. Really, sooner than that because I’ve been on some form of treatment for 7 years now. Seven years! It’s close to unbelievable to me that this is my life. That I am THAT PERSON who has cancer. An incurable cancer at that. Today I feel anxious knowing I have to go sit in a chair by myself, surrounded by cancer and sadness.
It makes me sad but this morning I woke up and had this thought. Would I ever want to go back to the life I had pre-cancer? My immediate and confident answer was NO. I didnt know who I was. I didn’t know who I wanted to be at 32. I was just going through the motions of being a new stepmom, a new wife, and living in our first home together. I was content with the path I was on but looking back I never felt completely fulfilled. In that stagnant moment of my life, I thought I was, but I guess thats what life sort of is. It is all of these moments that we put together, that we throw on a map of our life, and that make us who we are in this very moment. Life is a continuous path of evolving and what I have learned is that we all have the ability to be exactly who we want to be. If you don’t believe that, I suggest you do some soul-searching. Make some time for yourself, figure who you are, what you want, and what you want to give this world.
I have always been a giver. I was raised that way. What I haven’t always been, is the girl who sat out on a limb and put herself out there for the world to see. I am her now. I am her now because it fulfills my desire to give. That one moment, on November 7, 2014, is what changed my life, my perspective, my heart, my path—forever. That moment didn’t happen once, but twice for me. I still find myself asking “why me?”. What did I do to deserve this? It’s a question I know many of us have asked ourselves in moments where we feel helpless. One that we wish someone, God, anyone, would just sit in front of us and give us an immediate answer. Typically, that is never the case. So, we wait. Maybe the answer never comes to us but I’m fairly confident that it will, with a lot of patience, and a lot of mindful self guidance. Pay attention.
What has that moment changed in your life? It is SO easy to focus and give all of the attention to the bad but if you seek the good behind it all, and you focus on that, I believe it will guide you to that “WHY”. Your mind will inevitably shift back to asking why 1,000 more times, and that’s okay. I think that’s what helps us continue to grow. I think that’s what completes our journey to becoming who we are meant to be in this life. It’s fulfilling, at least for me.
I can look at this cancer and ask why a million times. In fact, I have. Every time I get a bad scan, I go back to that question. Sometimes, in between, I ask why. I am constantly reminding myself of everything amazing that has happened in the last 7 years. I remind myself of all the people I have met along the way. I’ve met some of the most incredible, genuine, loving, and honest people. I have these conversations that I walk away from and I have chills because of how much I had learned about myself and about someone else in a matter of 10 minutes. I listen. I share. I love with my whole heart now. I give with my whole heart. I receive with my whole heart. I enjoy simple moments, I enjoy big moments, all the same. I feel and empathize with others’ pain. I find joy in others happiness. I can’t think of any other way to put it other than this: My heart feels peaceful and full. It feels that way because I know, I am confident, I am on the right path in life. That is the answer to my “WHY”.
So would I change that one moment on my map? The one that changed my forever? The one that, at the time, I was sure my life was over and the rest of it was going to be hell? The answer is simple: absolutely not. For the first time in my life, I can honestly say that I am happy. I love with every ounce of my being. I AM THE LUCKY ONE. I am privileged to know what it feels like to sit in a single moment, good or bad, and just be thankful for it. I am here. I am enough. It’s that simple. Maybe tomorrow, I’ll ask myself “why” again. Maybe the answer to myself will be different but I am not waiting for someone else to answer that question for me. I know it is up to me to seek and discover why God has put me on this path. It’s also up to you. Patience, self guidance, self love, confidence—seek and you shall find, right? The answer is there. Maybe not immediately, but it is there.
We all deserve that peaceful heart and I am full of gratitude, in this moment, a moment I am feeling while I am in it. Another moment on my map. My hope for you is that you take that moment on your own map, and seek the gratitude behind it. And what a perfect way to enter the season of Thanksgiving. You owe yourself a little “Thanks giving”. After all, you are alive to simply read this, aren’t you? Isn’t that, in itself, enough to be grateful for?
I love the way a song and lyrics can speak directly to you, define a moment for you, and can open your heart and world to realize things about you, you may haven’t otherwise known. As she says, “My savior of self defense taught me to “write” what I cant say”. This blog has always been a place for me to share so many of the emotions I have felt throughout my diagnosis. I quoted that line from a song because in the 7 years that this blog has existed, something was missing. Whether you go back 7 years from my original diagnosis or you start from my recent stage iv diagnosis, I’ve always promised honesty. I’ve maintained that honesty, but this new direction I have chosen to take… has really opened up a piece of my heart, a deeper appreciation, and a window in to my true soul - the fears, the hopes, the dreams, the difficult journey I’ve been faced with. Sometimes this blog has been a place for me to inadvertently tell those closest to me, what was going on inside of my head. As I write that, I want to cry. It’s sometimes hard for me to tell them directly because, quite frankly, it’s hard. Its hard to share what goes on inside of my head because it can sometimes be a scary, sad place. I live a fearless life… full of fear. “No amount of remembering the better things will make the bad ones go away”.
Talking about my feelings and showing my emotions has never been something I’ve been great at. Writing my emotions, has always been much easier for me. So here I am, writing them all out. This is “My Little Voice” and, as the song goes, “Sometimes a little voice can say the biggest things”.
I hope I speak for those out there who might be afraid to speak. I hope my little voice, speaks the loudest words, the biggest things for those who can’t. This wasn’t an easy write, and it wont be an easy read.
I don’t want you to look at me and feel bad for me. I don’t want you to look at me and think of me as this girl who has stage iv cancer. I want you to look at me as a girl who lives her life, a girl who has made the best of her time, no matter how long or how short she was here. I’m a simple girl. This obstacle I have been faced with has forced me to live a life that is full of little gifts that I have given to myself. It has forced me to offer little gifts to others as well. I’ve been given the gift of truly appreciating the life that stands in front of me. A gift, many take for granted. I have been given the gift to leave whatever I want here —which words or actions I want to leave in the hands of everyone I love. If thats not the ultimate gift of life, I don’t know what is.
What most don’t understand, is that you have that gift too… you just have to utilize it, appreciate it, and move through it.
I can fully understand, sadly, that there is a real possibility that when I say goodbye to someone, it might be the last time. It welts me up every time. What does that goodbye mean to the other person? Was it just as meaningful to them as it was for me? How will they remember that moment—or me for that matter. I am very aware of the place and time I have on this earth. The odd thing is, is that my stage iv diagnosis doesn’t make my place or time on this earth any different than yours. You aren’t granted any more time than I am just because you are deemed healthy. We are all terminal.
I share my journey, my fears, my dreams, my travels, my life, and all that falls in between with the hope that you will be inspired to live a life that is fulfilled in every way you desire. I hope that you will say the things you want to say to the people you love without hesitation—even if that means writing a letter, or a blog. I hope that those I love know just how much I love them—but thats part of the gift I have been given. I have that voice. I can share that with them. I can leave whatever stamp I want to leave. I have been given a voice, a gift, the privilege, to leave nothing unsaid, nothing undone, and everything exactly how I choose.
There are times, such as this moment right now, that I sometimes wish I still lived in my little bubble. The bubble that guaranteed I’d live until I was 95 like my grandma did. The bubble that promised I’d have all the time in the world to say and do whatever it was I wanted. The bubble that I was sure wouldn’t pop. That naive little bubble that creates a safe space and protects you from ever having to worry about bad things happening to you. Most people live in that bubble. The one that says, “that would never happen to me”. Unless you have dealt with trauma in life, you’re probably living there right now. The part of me that wishes I still lived in that bubble wonders who I would be today. What would my purpose be? I certainly wouldn’t be writing this blog if I still lived in that bubble and I certainly wouldn’t have a nonprofit that serves so many women. I wouldn’t have met all of the incredible people I have met along the way. I never would have experienced the most genuine, giving, and loving humans who have supported me along the way. I, ME, This girl right here gets to witness pure amazingness and the GOOD that is entangled in all of the people I have met along this journey. Ahhh, what I get the privilege to see and feel through all of this is a true gift. I miss the bubble, but I am confident I live a more fulfilling life full of all sorts of amazingness because it has been popped. I live a good, simple, purposeful life. I have flown from that bubble and you know what? I am ok with that. In fact, I am blessed beyond measure for that.
When I finally accepted my new journey in life, I finally started to live; I’m not living a life that I question anymore. Though I am always trying to be a better person, and I’m still learning lessons about myself, I don’t question WHO I am. I know who I am and simply put, I am me. I am not trying to be anything else but me. I am finally sharing my little voice so that I can say the biggest things to you. The honesty, the hard parts, the fears, the joys, the GIFTS! I choose to live a life of hope. Tangled in there is fear of what the future holds, but this is “My Little Voice”.
As I sit here and look out at the ocean, in tears, I wonder when I’ll see her again. I wonder “if”. Most importantly, I walk away with an insane amount of appreciation for the sound the ocean makes, the energy it gives me, and the magical sunrises and sunsets that she shows me. It’s a simple moment to appreciate but one so many forget to truly take in. The ocean makes me realize that this world, and our reasons for being here, are far much bigger than we will ever be able to comprehend.
My Little Voice has turned in to something bigger than me, my purpose, and these special moments and the time that I get to share these words with you mean the biggest things to me.
Welcome to your voice and your heart, Jen. It’s nice to finally meet you.
“Sometimes a little voice, can say the biggest things, Its just my little voice that I’ve been missing” -Sara Barielles
And if you haven’t listened this song yet, I highly recommend you do after reading this.
I promised you I would be as honest and raw as I can be. I am confident many will read this and start to question themselves so I want to preface this with telling you, I am not seeking your guilt or a random apology. I am also going to tell you that I don't fault you for anything I am about to say. I don't expect you to know any better, until you read this. What I do know, is that I am 100% confident I am speaking up for so many women right now, and for that alone, it makes this worth every word.
I've been called self centered, by a close family member, during a very vulnerable time in my journey. Through all of the self growth I have done, I have tried to figure out in what world of hers, she would consider me self centered. Per the definition, I am certainly not pre-occupied with myself. In fact, I have always put others first. I have never enjoyed being the center of attention or to have the focus of anything be solely on me. I finally came to the conclusion that she just simply doesn’t know me - nor has she truly taken the time to get to know me. I didn't ask for this cancer the first time, and I certainly didn't ask for it the 2nd. The last thing I ever wanted was for my husband of 2 years to be feeding me, to be draining tubes coming out of my breasts, or to shower me while I stood there in complete humiliation. If thats what one would consider "self-centered" or being “pre-occupied with myself", then I guess I fall right in to that category. For the record, I am very aware of how inaccurate that statement is and I don’t, for one second, believe that to be a characteristic I embody.
There are so many unseen angles of a cancer diagnosis, whether it be from a caregiver, a friend, or the patient. I can only speak from my angle as a patient and I don't expect a caregiver or friend, no matter how close or not, to understand fully what I am about to say.
Sharing thee pictures below is hard. It’s hard to look back at those eyes. The drug-filled, fentanyl, Vicodin, Tylenol, chemo-eyes that didn't have a clue what was going on around me. I can only imagine how hard it was for others to look at me like this. As for me, at the time, I don’t think I even realized what I looked like. I was just doing my best to breathe and stay alive. My friends would visit me, force me to laugh, send me cards, drop things off at my doorstep, check in on me...all of it. While overwhelming at times, it meant a lot to me, and not because I am "self-centered,” but because when I felt like my world was falling apart, I was reminded I was still loved. All of those sweet gestures, were exactly what I needed at the moment.
Then one day, I “appeared” healthy, and POOF, many were gone. So I ask the question: Did you forget about me?
I say "me" but I am referring to anyone who has had cancer or who is battling a stage iv diagnosis. Where did you go? There is such a dramatic drop off when someone seems well. It leaves us feeling isolated, not good enough—like we did something wrong. At the time we appeared sick, you were there ALL of the time, but when we appeared well again, you were gone. Was our friendship only important when we appeared ill? No one is expecting dinner to be dropped off at our doors, or the many other amazing blessings given during our extreme time of need to continue. In fact, it is an extremely humbling experience to have to ask for help when we are already feeling like such a burden to everyone, but where did that friendship go? We think about how special those people are to us, how they showed up during a time of need, a time of extreme vulnerability, sat next to us, how much it meant, and how much they must care to go out of their way to support and love us at our worst; we begin to love and care for them back and they become a special part of our journey to healing. Maybe we even make a new friend or form new, deeper relationships.
Then it happens. We appear healthy again, as if our lives are back to "normal" but "normal" is no longer a term we understand. You disappear. Just like that, we feel a sense of abandonment, like we lost a friend. Maybe we feel like we were such a burden during our time of illness, and you've given all you can give to the friendship in that moment. I guess thats understandable and I believe every moment in life serves a specific purpose. The choice or action to disconnect, isn't one I will ever understand being in my circumstances, and I know I speak for others when I say WE don't understand it. That being said, I give grace to our co-survivors and friends. In fact, I am genuinely happy you don't understand what I am feeling. I hope you never do. I am not mad at you for this either. I do, however, know this is a topic that comes up more frequently than anything else, and for that reason, I am sharing my thoughts and speaking up for those who hold them inside.
Regardless of the appearance you made during my time of need, I am thankful for you. Whether it be dropping off a meal, a gift basket, or sitting by my side... you mean something to me. I haven't forgotten you. I don't necessarily think you have "forgotten" about me either. I just want there to be an understanding of the dramatic change we may experience in being surrounded with so much love when we appear ill, to then feeling that sense of abandonment, and how that might affect us mentally—it’s not a matter of attention or being self-centered. It's who we become after a cancer diagnosis. We change. Relationships become special to us. Who we let in during this time, is a big deal to us. We feel the internal change and it sometimes makes us question if the change we go through is one that you don't want to be a part of, or one that might be too much of a burden for you. While we are working on discovering who we are, we are also processing who you want to be in our lives, or who you were for that matter. Will you still be there? Will you only come around when I look sick? Am I only worth messaging when the news is bad? Will you be there to celebrate my triumphs AND my tragedies? Will you love me as I heal? Can you love the new person I have become?
No matter what capacity you choose to be there for me, know that I appreciate you. Know that I wont forget that gesture regardless of the size. You mean something to me.
If you are a caregiver, co-survivor, friend, or even an acquaintance, I encourage you to reach out to someone you haven’t spoken to in awhile. Tell them you still love them. Tell them you are still there for them. Love them THROUGH it all not just in the moment. Don’t allow things to go unsaid or the possible guilt you may feel from not reaching out in awhile, hold you back from checking in or sending that card. It means something. It means more than you could even comprehend. It's not because we need or crave the attention. Attention is the exact opposite of what most of us want. For me, I just want to know that our friendship means as much to you, as it means to me. It's that simple.
Cancer is a lifelong battle, even more so for those of us with Metastatic Cancer. It's never going to go away. I will live with this for the rest of my life. I cherish my time with you. I cherish our memories.
Speaking on behalf of many Warriors, I just ask that you please not forget the journey we have been through. Give us grace. Continue to be there for us. You mean something and we wont ever forget the special place you had in our lives - please don't forget us.
I’ve thought about writing this blog for quite some time now. Since my re-diagnosis almost exactly 2 years ago, I’ve changed – I’ve grown. I’ve spent a lot of time figuring out who I truly am, how impactful my words can be, how important it is to always let those I love, know how I am feeling. I’ve learned to share my feelings from a place of love and have been very conscious about voicing that love alongside my feelings. With every hit that cancer gives me, I learn something new about myself. I believe it’s an intentional poke from God encouraging me to be authentic, encouraging me keep growing spiritually and emotionally, sharing parts of this journey that while hard, important for others to understand the challenges of a stage iv cancer diagnosis.
So here it is.
Every time a scan comes back with bad news, I face my mortality. Every time I face that mortality again, it gets scarier and feels closer. There I said it. Maybe you don’t want to hear that. Maybe that’s hard to read, however, someone needs to say it. You know that feeling you get when you almost got hit by that semi, or you almost drowned but didn’t, that near death but didn’t happen experience? Yah, that’s what it feels like, but worse, because it doesn’t go away. You don’t just forget about it, be grateful the semi didn’t actually hit you, and move on with your day. The semi just keeps hitting you. Every single day, the semi hits and the battle in my head begins. Jen, you have today. Jen, be present. Jen, be positive. Jen, get out of bed and go do something to keep your mind off of the semi. It’s a constant battle. If I don’t remain positive, I feel guilty but if I don’t allow myself to feel, I feel guilty. I am finding that balance and discovering who I feel comfortable sharing those dark moments with. I am learning to be authentic in a way that is comfortable for me, not for anyone else. I am learning that it’s just as important to forgive myself as it is for me to forgive others.
Forgiveness is a gift you give to you. Read that again.
Do you not realize that we are all in danger of that semi hitting? Though hard, I remind myself of this pretty regularly. Maybe my semi looks a looks a little different than yours, but at the end of day, one day, we are all going to be hit by a semi. One day, we are all going to face our mortality. Do you want to leave this world with things left unsaid? Do you want someone else to leave this world without saying something you wish you could have said? I don’t. I am not sure anyone does.
I vision this as another “gift” I have been given. I can change anything I want to change, right now. I can forgive whomever I want to forgive, right now. I can say whatever I want to say, right now. I can have deep conversations with people, share my feelings, tell them I love them, make and cherish every single moment I have with them. I get to give myself that gift. I get to give others that gift. I have the privilege - THE PRIVILEGE - of living a life that is FULL! A life that checks off boxes most don’t get the chance to check off because the semi hit without warning.
“The trouble is, you think you have time” Buddah
I have struggled with sharing these thoughts because I don’t want those close to me, or those who follow my journey to think my time is coming to an end. I most certainly don’t want to worry or scare the people I love most. I don’t want to put anyone’s mind in a place that holds any negativity towards my journey. If you are reading this, I want you to fill that space you hold for me with only positivity and prayers.
I share these thoughts because since I began this blog over 6 years ago, I have shared the raw and honest truth behind my diagnosis. There will be more of these to come, some not so happy, and some filled with inspiration and hope. The one thing I can promise you, is that it will be my honest truth, my honest challenges, my victories, and my authentic feelings. My mission from day one has always been the hope that no one would ever feel as alone as I did when I was originally diagnosed in 2013. I know my truth can be someone else’s hope. I know my voice can, and will, help someone. My journey, and what I choose to share, while uncomfortable at times, may be exactly what someone else needs to hear or share, because they are too afraid to say it. It may be exactly what someone else needs, so they know they aren’t walking that path alone.
This is what feeds my soul. This is what gives me purpose and defines who I am. Cancer has never and will never define me.
I cannot change what has happened in my life – neither can you. It will have always happened to you no matter how badly you might want to forget that it did. The defining moment will come in deciding if you want to allow it to break you down or build you up. I hope you always choose to let it build you up, to discover the strength that it gave you, the purpose behind it all, and to acknowledge the ways it made you a better person. That, in my opinion, is the greatest gift you can give to you.
I think that phrase really says it all. What more do I really even need to write about?
I’ll start off with asking if you are you ok with NOT being ok? What’s the honest answer to that question? If your answer is 100% yes, I am ok with not being ok, then this post is likely not for you. If your honest answer is no, I’m not ok with not being ok, then I give you permission to continue.
I think the hardest part of admitting you’re not ok, is the vulnerability it takes to let that be known. First and foremost, you have permission to not be ok and you need to give yourself that; there truly is power in giving yourself that grace. No one expects you to be happy and positive at all times, and if you are, then I question how genuine of a person one might be. I am not saying run out of your house and tell the world you aren’t ok. I am just simply saying that you dont always have to have your shit together, and you deserve plenty of forgiveness in admitting this to yourself.
I know everyone is different but I want to share my experience with this battle in my brain. I’M GUILTY!!! (Insert raising hand emoji here) I am aware that many women look to me to shine that ray of sunshine in their lives. What most dont see, are the hard days. The ones where I hide in my closet and cry. The days where it is nearly impossible to get out of bed or the ones where I have to force myself to simply take a shower and put make up on and force some sort of normalcy for the day. Newsflash!!!! I’m not always ok. I’m not always positive. I’m not always traveling, or happy, or giving my all to everyone around me. Sometimes, I get so wrapped up in my own brain with fear and sadness that I become paralyzed and being a wife, mom, and friend are nearly impossible. For awhile, I felt guilty for feeling that way. I put so much pressure on myself to just be happy I was alive and implementing my own practices of being grateful for the simple, small things. That technique doesn’t always work and THAT’S OKAY!!! The art of accepting “Its ok not to be ok” is full of good intent, however, at times, a major struggle.
I wish every problem we had could just be tossed out a window or in to a fire, and it would be gone. Since we all know that isn’t possible, I will go ahead and give you permission to scream and cry at the top of your lungs instead. The chances of that making your problems go away, is probably zero as well, HOWEVER…
I want to be ok for everyone around me. I want to be ok for my kids, for my family, and my friends. I want to be ok for the women who look to me for advice. I want to be ok because I dont want to waste my time here on earth NOT being ok. That is a lot of internal pressure to “be ok”. If I dont give the impression that I am ok, then how does that filter over to everyone else? Will they worry?
Who do you feel the need to be ok for? Think about that: take a moment to think about the burden you’re putting on yourself by acting as if you’re ok all of the time. The overwhelming feeling of constantly bottling the reality of your feelings and struggles inside. It’s a ticking time bomb and one that will inevitably explode. Unless you’re in the business of firing off bombs in the middle of the desert with no one around, this isn’t good for anyone, especially you.
IT’S OKAY NOT TO BE OKAY! Repeat that until you believe it. Repeat that until you accept it. Let yourself feel all of the feelings necessary to move through that and give yourself permission to move forward. I have learned that when I’m holding on to my feelings, it manifests anxiety, which then turns to guilt because I know it’s holding me back from being the best version of me. However, there is something to be said for accepting that you’re not ok. It’s the first step in allowing yourself to move forward in whatever manor you feel is best.
Give yourself that privilege. Give yourself some love. You owe yourself as much,if not more love, than you give others. Don’t forget to internally verbalize that love while your accepting that you’re not ok. Sometimes, a little self-love is all it takes to realize that underneath all of that mush, is an amazingly beautiful and loving wife, friend, mother, and human being.
You are human. You are not perfect. Perfection shouldn’t be a goal. Patience, grace, acceptance, and happiness should be. These are all word that I constantly have to remind myself of. Acceptance that it’s ok not to be ok. Patience in allowing myself to process whatever it is that I may be holding on to. Grace in knowing that may take some time. And the most important part, in my opinion: happiness. The simple privilege that I owe it to myself, YOU owe it to yourself, to feel happy, to feel at peace, to feel ok again. That time will come, and there is no timeline that anyone, not even yourself, can put on that.
I grant you permission to give yourself permission to not be ok, and I encourage you to love yourself enough to be ok with that. The sun will ALWAYS shine again, and everything will once again, be ok.
The word perspective has come in to mind a lot lately. It’s an intention I have taught myself to learn over the last 6 years but even more so after the last 2. I truly believe our perspective in any situation, can completely change the way we cope and move forward. How I cope with and perceive my situation is what impacts my level of depression and anxiety. If I can manage to put things in to perspective, it provides a sense of calmness within my mind.
That being said, I want to write about that today. Perspective. For me, when things seem really bad, I’m able to center myself on how I choose to perceive that moment in my life. I want to be clear when I say that I would never wish what I have gone through the last couple of years on anyone! My hope is that I share a new perspective with you, from someone you know, from someone whose story you have possibly read, from a 30 something year-old who was relatively healthy despite having cancer. What might seem like the worst possible thing to happen to any one of us, doesn’t have to be if you have the ability, or take the time to simply change your perspective. I am, by no means, a master and at times I fail royally at doing this, however, when the effort is put forth, I find it incredibly rewarding for my mind, body, and spirit. Asking myself why is this happening FOR me, instead of why is happening TO me, is a daily conversation I have with myself. Why did I get cancer? ME? WHY ME? I can dwell on that or I can answer the question with a perspective that only radiaites positivity. Why did this happen to me? It happened to me because I was meant to experience a life altering illness, to learn who I am, to share that experience with others, and to help others who will walk that same path. It happened so that I could create a platform for so many women to connect, to bring a community together, to empower other women. Thats why it happened. It didn’t happen because God was mad at me or because I did something wrong. I am a firm believer in the saying, “positive perspective, positive outcome”.
I can only imagine we are all processing what is going on in the world much different than the person sitting next to us. While many of us are trying to figure out a new routine, others may be trying to figure out a way to stay busy, and others may be taking this time to slow down. Many of us might be experiencing anxiety which can easily filter over to depression. I have personally had my own moments there. I feel anxiety knowing that there is something out there that could kill me other than cancer. I feel anxiety knowing people are out there spreading a virus and wont listen or acknowledge the orders set forth. I feel anxiety knowing I cant control those people, and those people, who I don’t even know, might be responsible for my own health. I feel anxiety knowing that the things I would normally do to cope with my anxiety aren’t available to me right now. Not being able to cope with my anxiety in the ways that I have taught myself to, is a slippery slope, and one that I am doing my best to avoid. This is where I choose perspective.
There have been several moments in my life that I was sure it couldn’t get any worse than it already was. When I had cancer the first time, I thought I was dying. I specifically remember laying in my bed one night and my heart was racing so fast from all of the meds, and I was sure that was it; I prayed, and simply said I wasn’t ready yet. At 105 pounds, bald, and sick, I thought that was as bad as it could ever get, but just a short of 5 years later, I’d realize it was about to get much worse. In all honesty, I tried really hard to stay positive and tell myself it was a slipped disc from all the working out I had been doing. The pain escalated so quickly and in matter of days, I’d be paralyzed. I can very truthfully tell you, that the pain I was experiencing was so incredibly awful, that I almost didn’t care if it was my time. There truly are no words that could express the level of pain and fear I experienced. Imagine going through all of that, and then being told you have an incurable disease. Looking back, I’m glad it wasn’t the end and I’m obviously very blessed and happy to have recovered. To say that time in my life was life changing, is a complete understatement. It was a moment in time. From start to finish, it was about 8 months of not being able to do much of anything between the pain and chemotherapy. Life: the life that I enjoyed, the life that I knew, the life that I did my best to create, was all taken away from me in a matter of a moment.
In some ways, I very much relate that experience to what we are all experiencing right now. Life, as we knew it about a month ago, has been, for lack of a better term, “taken away from us”. Many of us can’t work. Many of us are being forced to slow down. Many, if not, all of us, are very scared for what the future holds, whether it be the fear of life never returning back to normal or the fear of getting sick. I wake up every single day and I am reminded I have cancer. It’s not just a nightmare, its real, I have an incurable cancer. Imagine that for a moment. Imagine how that might impact the attitude that I go in to every day with. We are all waking up right now with the fear of the unknown, the fear of this virus. We are all making adjustments and the hardest thing for us to accept is the idea that we have no control. While that may be true in some ways, it is not all true. What we DO have control over, is how we choose to perceive what is happening and how we choose to move in to the next moment. By moment, I mean, the very next moment, minute, hour, or day. It’s as simple as saying, “I don’t want to feel this way anymore. What can I do to feel differently?”
If the emotions that consume you are ones of anxiety, depression, confusion, anger, sadness, etc…those are the emotions that are going to determine the day ahead. I’m not saying don’t go there, I’m asking you to not stay there. Feel it, physically let it go, and come to a place of acceptance that this is where we are right now. What can YOU do to change your perspective? What can YOU do to find the positivity, or the silver lining if you will, in this? Personally, I have found SO many. I hate being locked up like this. It sucks! Its not me and I’m even more angry that I can’t just go live my best life, travel, visit my friends and my family, and that I am completely quarantined, while I’m battling cancer. Now I have to sit here and do nothing??? Yes. Will I? No. I choose to change what I am doing. I choose to make the best of these new and current circumstances. But what does that look like? For me, it looks like going on a bike ride outside, learning to play my ukulele thats been sitting in my closet for months, spending good quality time with my husband, and having awesome conversations with so many amazing friends.
Perspective: a particular attitude toward or way of regarding something; a point of view.
We are not suffering, we are growing. We are not being tormented, we are being taught. Are we being taught patience? Are we being taught how simple it might be to feel happiness amidst the chaos of our every day routines? How can we take this time to grow? Is it learning to slow down and spend more time with the ones you love? Is it realizing how important, how special it is, how MEANINGFUL it is to have conversations with our loved ones that we may have been too busy to have otherwise? Is it having the time to take that 5 minutes to feel the wind blowing, or watch the water flowing, or your dog rolling in the grass and the simple happiness that brings him. Why is it so difficult for many of us to find those simply joys? It’s times like these that we are forced to come together to help one another, to love one another, to truly appreciate one another. How incredibly amazing is that???
I’m not preaching. I’m teaching you what perspective means to me. This is what I’ve learned the past couple of years. I do not enjoy what is going on right now, but what I do enjoy is that we have all been given this time to slow down, to look around us, and to acknowledge and feel how simple life can be. Happiness is simple if you allow it to be. It doesn’t have to be complicated. We make it complicated.
My hope is that when this is all over, we are more connected, more patient with ourselves and one another, and that we live a life full of simple gratitude. I hope we can learn to feel the serenity of being present and knowing that most of this life we are blessed with is beyond our control. I hope we have shared stories and so much time with our families that it becomes our new routine. I hope we find comfort and acceptance within ourselves. Most importantly, I hope we can all take this time to give ourselves the privilege of seeing this life we have been given with a new perspective. You owe that to yourself. You owe yourself happiness. You owe yourself peace. You deserve it. We all deserve it and we are all capable of it. Trust me, one day you will look back at all of this, and realize it was just a moment in time, a blip on the map of your life. Perspective: Do you see a weed, or do you see a wish? Perspective: Is this storm here to disrupt your life, or clear your path? Perspective: Is this happening TO us or FOR us?
What I love the most about perspective, is that it’s MY choice. I get to choose and control what that looks like for me. I get to choose how I will move in to the next moment of my life, and I implore you to do the same. I encourage and challenge you to seek and find hope in knowing the sun will always shine again.
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.