Life can be confusing under the best of circumstances. The difficulties usually lie quietly in the words we choose to communicate, as ideas and thoughts can become muddled in the midst of single words and sentences. My wish is to explain, or deconstruct, many words I have written, so that those reading them can understand my mindset a little bit better. Please don’t fret and worry when I write about being set free. I see and feel the anguish many of you are experiencing when reading those words. The wide eyes, the sad expression on the lips, tells more than any questions you can offer. In my mind, being set free is as far from letting go into death as a mile is from an inch. At this point in my journey, I have no intention, or need to “walk the mile”. I will gladly take my inch. So what are my intentions and thoughts behind being set free? I have ruminated, prayed, and spun in my grief to come up with the answer that fits my entirety well enough to call it my own. To be free in my mind, my heart and my soul means to be free of the expiration date slapped on my body at a time unbeknownst to me. Freedom is living in this moment and being able to see the deep green color of the pine trees with each branch and each needle taking it’s own space in time. It is seeing the glory of fall’s colors, bright reds, oranges and yellows glistening in the sun on each maple tree. It is the ability to ask myself in wonderment how can such beauty exist? It is in the ability to stand outside with my dogs and notice the scent of the wondrous wet earth beneath my feet as it sits freshly dusted by a gentle rain, and feel the moist dew on my skin. Cool and fresh it reminds me, I am still here. It is sitting quietly with my dogs and having my heart swell with love, feeling their soft skin on my hands, and feeling loved beyond the measure of words. Tomorrow may or may not come. Tomorrow may be beautiful and filled with the magic and beauty of life, or an epic struggle to simply breathe and understand pain from morning until night. Tomorrow can only count in tomorrow’s moment. I am allowing myself to live today, in the singularity of a moment, and feeling joy in that moment. This my friends is being set free. I am free of the minutia and small thoughts that my diagnosis drug me to kicking and screaming. I am free from mourning my own passing on behalf of myself and the people I love, because every minute spent on that is a minute not spent living now. I am free to live, and live well, for as long as I do, and that is the freedom I have granted myself. The best advice I can give to anyone, whether you live a long life, or short life, is to live as if every moment is so extraordinary that the end no longer matters, it is of no consequence to the here and now. Live, and love……..rejoice, because life is beautiful regardless of time.
I cling to you for so many reasons,
The key to my wellness your smile carries to hold,
Are you my savior, and the length of my seasons?
My hopes and fears entwined to be told.
A gentle smile brings quiet to an unsettled soul,
Your gentle hand brings me to comfort,
Lead me forward, with my hand in hold.
Fear fills my head, my heart and my mind,
Walking these hallways wondering what I will find.
Each visit brings worries and so many cares,
But your eyes bring me comfort, your words always shared.
Walk with me doctor, through the halls and trenches we have both found,
This journey is ours, with your lead to bring me back around.
Our hands will be left raw through the battle of this brutal fight,
Bloodied and saddened but never relenting in this plight.
Your compassion brings me peace, and settles my unsettled,
Your words give me strength for the demons I must wrestle.
Eyes that see through me, you see my fear
For my future is uncertain and ever unclear.
Help me be strong, remind me to be humble.
Dear healer of bodies, souls as well,
Know that I see the person and the soul in a doctor’s shell,
Doctor, dear doctor, know that I see,
The person, the woman, daughter, sister, and friend who sees me.
Your eyes share the pain of your calling when the frail start to fall,
Even when your voice sternly repeats the learned recall.
I hold on to you tight with hope and fear,
You hold me tight, in hope and care.
Compassionate healer, compassionate friend,
Help me walk this path, help me when my time comes to end.
August 26, 2019
I’ve been anxious to get my hands on the keyboard for the past few days, but waiting until my thoughts could form some kind of tangible rhyme or reason. I want to start with my thoughts on medical doctors, medicine and medical care in general. The smartest lesson I think I have learned to date, and unfortunately, had to learn with a diagnosis of metastatic breast cancer, is ALWAYS, ALWAYS…..ALWAYS get second opinions, third opinions, fourth, and as many as you need until you are fully satisfied with the answers you are receiving. Even if you are of the opinion that your doctor can, or might be able to walk on water, ALWAYS at least get a second opinion. Lesson number 2? Always refer back to lesson number 1. Today’s post is by no means a doctor or medical care bashing session. I do believe that most medical professionals do work hard and intend to help their patients, but sometimes a fresh pair of eyes can catch things that the status quo simply cannot see. My point in question? I had a one centimeter tumor in my breast. There was limited metastasis to my lymph nodes and blood vessels, which my medical team deemed “not enough to matter” and I was told there was zero spread. I went through all of the usual genetic testing including testing on my body, my cancer, and oncotype testing as well. The statistics looked fabulous, giving my oncologist a false sense of security and hope that I was……here it goes…..CURED. I suffered from terrible back and hip pain shortly after a double mastectomy, and because I was “cured”, every single doctor at the clinic taking care of me dismissed my back pain. I faithfully took the preferred medication to prevent the spread of my cancer for almost seven years. Of course it could not and would not metastasize! My own oncologist kept drilling me to exercise more in some poor attempt to mitigate my joint pain and symptoms. Low and behold, almost seven years after my mastectomy, solely by a stupid accident on the part of a well meaning radiologist looking for arthritis, I was able to insist on being checked more thoroughly by means of a CAT scan. Mind you, in almost seven years of being checked by my oncologist, in dozens of visits, never once did I have a blood marker test, a PET scan, CAT scan, or an MRI up until this point, regardless of my debilitating back and hip pain. To make a long story short, the CAT scan in insisted on having led to a MRI, which led to a multiple bone biopsy and a positive metastatic breast cancer diagnosis. My doctor was on vacation when the biopsy results came back, and all of the stars lined up for me that week. I was lucky enough to see my oncologist’s partner who thought it would be too much work in ask my insurance company for a full PET scan after my diagnosis. I can wholeheartedly say that God was working full time, dragging me along as I kicked and screamed, into the hands of a new doctor. The PET scan that I finally was able to get showed metastasis in more bones, which would have never been seen if not for my first PET scan. Was my doctor and her partner wrong, or maybe lazy, or maybe even too arrogant to admit they did not cure me? I don’t know the answer to that question, but I do know this much….if any doctor, including the oncologist taking care of me had bothered to run a simple blood test for markers, or a PET scan, CAT scan or MRI, I would not have languished for years in insurmountable pain and the metastasis would have been caught much earlier. I don’t blame my previous oncologist for the metastasis, and I harbor no ill feelings toward her. I think she did the best that she could. That, unfortunately, wasn’t good enough for me, for this body, and looking back, for this mind. By God’s hand I eventually landed in the hands of a doctor who is working diligently to keep me alive. Will I question her? Yes, I will. Will I continue to do my own research and be my own advocate? Yes I will. Always remember, nobody, absolutely nobody can be a better advocate for your body than you! You have to live in your body, and live with the health you advocate for. Listen to your body when it whispers, so you don’t have to listen to it when it screams! Now, the first lesson learned? Be an absolute advocate for yourself and never take any answer that does not absolutely fill your needs. Lesson number two? Always refer back to lesson number one. As always…..the next question is always……where do I go from here?
It was a cold winter’s day when I first heard your name,
You crept into my life, but this was no game.
Like an unwelcome friend, you grabbed me by the hand,
You led me to new paths, my life slipping through the sand.
Lurking for years, unheard and unknown,
Until that cold winter’s day, when I saw you unfold.
A clumsy cell growing wild and free,
My own body trying to do away with me.
The word that rings as deafening thunder,
My will was set, you would not pull me under.
Faces of kindness worried and frenzied,
As my wonder would bring me to remember a life now to be envied.
You stole my innocence, you brought me to my knees.
Would you be my expiration, would you be the end of me?
You took my joy, my confidence, you took my mind,
You left me reaching and yearning as if I was blind.
That cold winter’s day stays in my heart,
Reminders and moments I now wish to empart.
You have filled me with bitter rage, a taste in my mind soul and body,
You have filled me with sadness, and yet now you turn me so oddly.
This rage I have found gave birth to compassion,
My soul has been found with no room for concession.
One step, one foot, standing on each side of a door,
One step, one foot, anchored in the loves I adore.
Take me if you must, tow that ragged line,
But know you cannot take my joy, my love, or this day, but only time.
Each breath I take is still mine to take,
Each moment enscripts as memories are made.
My mind is my own, as my thoughts will always reveal,
I am a soul in a body, and my soul you cannot steal.