Meet Caitlin (see image)! She is kind and careful, thoughtful and deliberate in her actions, all of which I appreciate to no end. Yet another cool KU Med Cancer Center chic!
My oncology appointment this morning resulted in them telling me that the mass has shrunk to beyond what she can even measure. Amazing news and exactly what I needed to hear!
The title of this post is the last component of "The Good, the Bad and the Ugly". In contemplating all that I want to accomplish with publicizing my journey from diagnosis to Cancer Free status, I realized that I still want the prevailing message to always be one of HOPE and JOY in the midst of "the Ugly". But what I would NEVER want to do and will try to avoid is creating a picture that is unbalanced. I know I have read testimonies of some who have gone before me down this road and been impressed and simultaneously disheartened by the absence of "the Ugly". It existed for them, right? Am I the only one struggling with the physical symptoms, the self-esteem issues, the limitless guilt for not being able to do all the things I could do before for those who depend on me? Surely not. Right?
On the other hand, testimonies that only speak of "the Ugly" only serve to distract me from what I know is true: that there is HOPE and JOY to be found, regardless of the external or internal circumstance.
So my goal is to provide a balance. There do exist silver linings and they change and develop over time like all the wonderful parts of life tend to do. But "the Ugly" changes and evolves too. It expands and deepens and strikes at parts of you that you felt were safe, secure...maybe even untouchable. And the guilt that ensues from "allowing" those safe places to be tainted by "the Ugly" is immeasurable. NONE of it is permanent. But all of it is palpable. It's all real. It's all brutally honest and raw. It all leaves you feeling like one big open wound. And it's not ok! It IS part of the evil in the world. And it sucks to be one of the people who have to endure it! HOWEVER, I also KNOW that my connection to my God, my family and others around me who love me deepens with everyday as I learn to depend on them and trust them more so than I have ever before.
So, we'll start with the obvious parts of "the Ugly".
The HAIR LOSS: It stings a little. Literally. There is little interesting stinging sensation. It's like a wave that runs over and through your scalp. That's how you know it's dying. I have taken all my hair off at this point but there are still some parts of it that are determined to stick around until the last possible moment....and I still feel them dying...gradually. It's not a terrible pain. This pain is one that is easily ignored or put out of my mind.
But it's not as easy to walk into a restaurant, even with my hat on which is meant to mask the baldness to a degree, and have people stare. As a single woman, who historically thought herself moderately attractive, it is a difficult thing to lose my hair. I considered it a feature I liked about my appearance, and in the vein of being transparent, I have lost a little bit of my confidence. I am still a person who tries to consistently wear a smile, but my self esteem has taken a hit. I WANT to be the person who in not impacted by this! I want to be fully confident in who I am as a person and what I bring to the table in any given situation and in who God created me to be! I WANT to believe in my core, wholeheartedly what I tell my students and my own children: that they are PERFECTLY beautiful on the outside and on the inside, regardless of the things they are thinking they'd like to change about themselves. And the wonderful thing is that I have people in my life who tell me the same things. They say it in the context of a hug or a message and I DO believe they mean it. What I want is for the truth they speak to work it's way to my insides soon. Because the tears that used to come from fear of the unknown, fear of deserting my children at the hands of this terrible disease, they are gone.
The tears that come now are from feeling like someone other than who I used to be and from feeling powerless to change it. I can DO something about the cancer. I am doing it now! As the Perjeta (bag # 3 today) makes its way through me...it is killing what is trying to kill me!
I will survive the Cancer. And what I can do to act on the Cancer is something I could choose to hide and keep to myself indefinitely. No one would ever need to know or suspect. But I can't hide what the medicine does to me. I can't or choose not to sweat my butt off under a wig 24/7. I can't hide the hair loss, fatigue, the nausea, the vomiting, skin and nail things, the headaches and body aches and vision changes. They are part of what makes me exposed, and raw, and more vulnerable than I would have ever chosen to be outside of this situation.
The FATIGUE is another component of this that is I think "expected" by those around me but is not quite understood. The fatigue, like the NAUSEA is a constant feeling but one that comes and goes with varying degrees of intensity and at times can hit me like a Mac truck with little warning or come on slowly giving me a little time to adjust and prepare. I can wake up feeling as good as I can possibly feel and by noon be overcome with whatever may be working in my body at that moment to the point where I can do nothing but go home and go to bed. With a big job and 2 small kids, the guilt that comes with this is overwhelming. When all I really want to do is be there for my staff, stay on top of all of my responsibilities and play with my beautiful boys.....and my body will not allow me to do any of that...I find myself wondering if I am just not as tough as I thought I was. I was FIERCE. I was determined. I considered myself a FORCE for productivity, compassion, problem solving, and progress. A small part of a huge team of people with a common goal...and I had it in me to do what it took to do my part. I CAN'T feel that way right now, because it's just not true. I do my best on any given day knowing that on some days the depth to which I fall short is substantial. To pen that this process has been humbling would be to pen the greatest understatement of my life.
My children are 2 of the best examples of grace and mercy right now. They are fierce themselves. Passionate and vocal in their opinions of each other and of me at times but in reality, their lives have been turned upside down, and the degree to which they have been able to adjust and offer their sick Mommy forgiveness and compassion is something I can only admire and aspire to.
It's called CHEMO-BRAIN for a reason.
Depending on the day, my thoughts can be jumbled, my memory seems to be lacking, my focus and concentration are a mess. I have always been someone who works so hard to be fully present in my conversations that writing things down in the midst of those conversations has never been something I'm great at. If I don't have my computer or my phone, those around are growing used to my requests for a follow up email if they are asking me to do something or follow up with something. Now-a-days, most don't even think twice: I typically have an email waiting before I even make it back to my desk. To some, I suppose those gentle reminders are annoying? For the life of me, I just cannot comprehend WHY? We all need help! As long as reminders remain "gentle" I'll TAKE THEM every day of the week and twice on Sundays!
The SCARS that I am collecting and will continue to collect throughout this process are another part that chips away at my self esteem. In the same way that stretch marks hit a young mother who had hoped to avoid them but who knows her body has been marked forever at the hands of this person she loves beyond herself I suppose. I HAVE to survive this. (I know if I died at the hands of this or something else, I would instantly be in the hands of my creator and face nothing but paradise, but I'm not ready and my children are not ready for that to happen yet.) SO my body will be scarred....substantially scarred for the remainder of my life as a result of the different facets of treatment required to heal me. That's hard.
And I write all of this, not to make anyone feel bad for me. That is not and has not been the goal of this blog. I write it so that ONE person (maybe more) can read it and know that they aren't alone.
What I still know is that I will have hair again. I will have LONG hair if I want to!! And I will feel good again. And I will not always feel jumbled or distracted in my thoughts. And I will learn to live with and even love my scars as a reminder of the battle I fought to win the rest of my life. And this process will not define me forever. But it has and will continue to shape me, as all the events of our lives do, into a better, stronger, more resilient person, mother, educator and leader. I will be more aware of the blessings of God in my life than I ever could have been without having endured this. Even now, the sun shines brighter than I have ever noted before. The rain is more exhilarating. More than ever I recognize it's purpose in facilitating growth and perpetuating new life. The innocent (and sometimes not so innocent) smiles of the children I am blessed to know are brighter. I pray that going through this solidifies those "epiphanies" we all have from time to time inside me. I have a purpose here. I may not fully comprehend all of it yet. But I am trusting the process being used to reveal it to me. I am playing the game. And there will be no overtime. There will be one winner. And it will be me.
