Dear Doctors, While you profiled stress, he died of cancer. #PTSD. #Depression. #Anxiety.

Dear Doctors, While you profiled stress, he died of cancer. He didn’t have to die. Not the way he did. I write these words not for drama sake nor your pity and prayers. I have been silent, up to this point, in order to deal with my own health issue. But now that I am finished with what I hope to be my final big deal in this breast cancer journey, it’s time to speak up.
Denial never sustainably served anyone so I am not sweeping this under the rug.
Consider this post a tiny ripple in a vast ocean of health care despair; urging attention, focus and advocacy for solutions in a health care system that breaks as many hearts – in what they miss and dismiss – as the diseases/conditions they work to cure. “... Ray lived only 50 days beyond diagnosis and most of that in a hospital. And now, I am left to digest that it was a slow-growing cancer, missed by a medical system of specialists and primary care that only looked at their piece of the elephant. A blog for another day.”  I wrote that in July’s, Why I'm Not Fighting Cancer Again blog, and today is another day. Why today? Because on February 6, 2017, I was not sitting at a keyboard in front of a computer screen. I was sitting in the emergency room of a hospital an hour away from home, terrified that someone I loved lost his footing and fell between the cracks within the medical community that was supposed to help him – to the point that suicide now appeared his only option for relief. The goal? Admission into a hospital that was purported to have an excellent mental health wing. The hope? Stabilize him so we could address his weakening physical condition without his taking his life first. Imagine our shock when, just hours into the admission clearance process, an x-ray revealed a suspicious spot on one of his lungs. Further testing uncovered growths on his liver. Imagine our dismay when, seventeen hours after arrival, we were informed that he could not be admitted into the psychiatric wing and had to go to the main hospital where they could get a better idea of what we were all looking at. More tests revealed cancer in his spine and brain – which certainly explained the pain, tremors and strobe light vision he’d been experiencing. His physicality was so fragile they were afraid to biopsy his liver so they went with the lung – also risky. Diagnosis came days later. Stage IV, metastatic cancer. Squamous cell carcinoma. A slow growing cancer. Slow growing? Yes. My question, too. I could understand if this man seldom went to a doctor – like me. But how could a slow growing cancer spread to this degree in a man who, between his primary care doctor and specialists, was in a doctor’s office monthly –sometimes weekly – for the past 4 years because his body was breaking down and he thought he was losing his mind? What is broken in our system that his condition could pass under the nose of how many medical specialists and no one connects the dots? Isn’t that what the primary care doctor – in the hub of the wheel – is supposed to do? If not, then we have a fragmented, scary system that offers us a false and fleeting sense of security. And a lot of dead elephants swept under the rug. Yes. I’m mad. Mad for change. I know ... I’m not the only one who’s sat in emergency with a loved one threatening suicide – for any reason. I’m not the only one to hear the words cancer – at any stage. I’m not the only one to deal with my own cancer – while another dies. I’m not the only one sitting at home in my bathrobe at noon, on a weekday, wondering what the hell happened and why.
I’m not the only one. That’s a lot of ripples in this vast ocean of health care, I think.
I know this little ripple of a post will not change an entire medical system, or health insurance protocols, or how doctors look at their patients but I hope this will change how you look at yourself and the ones you love when you venture into this maze with a malady.
  • It is an arena where doctors need to earn trust based on communication and performance, not simply degrees.
  • Where word-of-mouth referrals within your trusted tribe should reign supreme, while good doctors are shared and poor doctors shunned.
  • And where no one venture in alone without a strong advocating buddy system in place for patients and caregivers.
Ray didn’t die of cancer. He didn’t survive the system set up to find it and fight it. Big difference. And, I believe his history with PTSD and depression contributed to his doctor’s perception of the patient complaints in front of her – while his liver screamed for attention. The liver that took numerous hits from the many medications prescribed to him to "treat" symptoms without further investigation. But that’s a blog for another day. To be continued... If you are a ripple, want to be a ripple of change or have experience to share, please add your voice here, DEar HEaRTs. You are not the only one and neither am I. You matter to me! XO Bernadette Subscribe to this blog or follow me on Facebook. And if you like this then LIKE this! Remember, SHaRiNG is CaRiNG. If you found something here that inspired, you may know someone else who will feel the same.

Why I Won’t Survive Cancer

Why I Am Not A Cancer Survivor
The musings expressed here are strictly those of a woman making her way through breast cancer and are based solely on her personal beliefs and experience. They are not intended to sway or convince anyone of anything other than to honor-with-action what is right for them.
  Okay. Now, that’s out of the way. Picture this. You’re standing in a hallway. The light is dim. There are two doors. One says Survivor. The other, Thriver. That’s it. No other door. No third option. Which do you walk through? And on what do you base that decision? Those presenting me with the standard medical model don’t see the hallway. They don’t see the two doors. As a matter of fact, a few of them don’t even see me. When they look at me, they see cancer, a breast that is gone, and a pathology report that says cancer cells may be left behind. And they see their particular medical offering of what might constitute a cure. Some of these specialists don’t like the questions I ask or that I ask them at every turn. They don’t understand that I am not questioning their expertise. They don’t understand that I am gathering information critical to my peace of mind – a peace of mind that necessitates I am part of the equation in this medical maze of treatments. (After navigating the insurance maze, I might add.) Am I sounding frustrated? Well, ride with it because I am. And, at times, I am also dismayed, shocked, aghast; disappointed with the “one size fits all” approach I am being offered after a mastectomy that showed no cancer in the lymph nodes taken or in the blood.
I have chosen my door. Thriver. Because thriving is something I can do now.
I don’t want to survive. I don’t want to wait 5 years, or 7 years, or 10 years to be pronounced cured of cancer. I know myself well enough to know that I won’t do well with a finish line way out there. And, if I follow through on the treatment offered me, I may very well be dragging myself – prostrate – across that finish line. Will I be able to resume quality of life after surviving cancer treatment – and cancer? (Assuming a car does not hit me first.) And what about during the extended treatment and recovery time – how many years down the road? I have to work. Ray’s battle with cancer took him to the other side of the veil. We have no children. And, though I am blessed with amazing family and friends, I will not add to the loads they are already carrying to appease a medical model that doesn’t fit my circumstances – and invites caregiver challenges down the road. The specialists, who call me out on my judgment or dismiss my concerns with “I can write you a script for that,” won’t be with me down the road. They won’t be living in my body, in my house, or holding my hand if I need to pursue medical treatment for a leaky heart valve, tunnel vision, disintegrating bones – or any number of the side effects that show up after the treatments they say I must endure. (With no guarantee of a cure because they cannot actually see or measure the cancer left behind.) They have to believe in what they are doing. I get it. I’m glad they do. They help a lot of people. But I don’t have to believe in what they are doing. I have to believe in what I am doing. Today, I respectfully defer the big guns to last resort treatments and will do my best to thrive while I wait to see what this body God gave me can do with less invasive modalities because thriving is what I want – now. Not surviving – down the road. If I have miscalculated, in not agreeing to the arsenal approach first, then so be it. I will thrive – one day at a time – in peace with God and my decision. In conversation with a friend a while back, I found myself saying that cancer warriors take on the chemo and radiation and that I can’t be counted as a real cancer survivor because I am not doing any of that. All I did was surgery. She was quick to point to the courage and dedication it takes to walk down this less beaten path – and to stick with it. Diet. Exercise. Attitude. And all maintained while grieving. This is the gift that losing Ray to cancer gave me: determination with no fear. I do not wish to be a bad poster child for this more holistic approach – as one specialist inferred. The way I see it, there is no bad poster child where cancer is concerned. It all takes courage and each one of us is on this walk for those who come behind us. (Caregivers included.) We share experience, strength, and hope in our daily discoveries until better-targeted cures can be found. (Ones that don't devastate bodies and leave families stressing with mountains of debt afterward.) My mother-in-law was diagnosed with breast cancer in her 80’s and chose not to pursue any treatment. She lived to be 101. Her death certificate stated cause of death as “breast cancer.” I say she died because she was 101 and her body was tired. And, guess what? She had quality of life into her late 90’s. I’m thinking she wants me to remember that. Even though statistics will place her on the side that supports what happens without treatment. If you are living with cancer, you cannot be a bad poster child. That’s my story and I will thrive with it. I am willing to bet you have a survivor-thriver story of your own. There are lots of experiences in this world that grab us by the seat of our pants. Don't stay in that hallway too long. Life is calling!   By The Seat Of Your Pants eBook Cover By The Seat Of Your Pants is one of my Bucket List projects. It’s a downloadable eBook and my gift to you. No hitches. Enjoy and Share! CLICK HERE to find out more. Subscribe to this blog or follow me on Facebook! Remember, sharing is caring. If you found something here that inspired, you may know someone else who will feel the same. XO Bernadette  

Why I’m Not Fighting Cancer – Again.

I’m told I have breast cancer – invasive lobular carcinoma. Stage 2. The initial test results came through 7 days before the Celebration of Life I had planned for Ray – my husband for 37 years – who died on the fast track of a cancer found too late. I chose to put the news of my party crasher quietly on the backburner and go on with my plans to celebrate the LIFE I shared with this man. Maybe I am just too raw, with this overlapping Ray’s passing, but I’m not accepting the invitation to play war here. I’m not fighting cancer – again. I am LIVING while I navigate this next chapter in my LIFE as I learn to live it without his presence. What you say? Isn’t the battle with cancer about fighting for your life? No. Not when you STOP LIFE to fight it. Anyone who’s gone through this knows what I am talking about. A lot of stuff goes through your head when faced with your mortality – or that of one you love. You say “Yes” where you might normally say, “Stop” or “Wait” or “No, let me try another way.” Ray and I barely had time to digest the news that his was Stage 4 metastatic before we found ourselves caught in the revolving door of tests, doctors, hospital beds, pharmaceutical cocktails, heart monitors, iv drips – and blood drawings that turned his arms black and blue. Of course he would fight it and I would support his wishes. Given the circumstances, fighting was probably a better option for him than devastation and grief – as he lived only 50 days beyond diagnosis and most of that in a hospital. (And now, I am left to digest that it was a slow-growing cancer, missed by a medical system of specialists and primary care that only looked at their piece of the elephant. A blog for another day.)
I will never attend an anti-war rally; if you have a peace rally, invite me. – Mother Teresa
I am not fighting cancer. I am embracing life and that embrace is my basis for recovery and healing. So many precious moments were lost in Ray’s fight. Moments that we did not know were to be our very last because we were too busy fighting “it” to check-in with the rapidly changing terrain. I do not wish to lose my focus or balance. Family and friends have been put on notice to rouse me if they see this happening.
They know cancer is not part of the equation when it comes to creating what matters most in how I love to move through my life and how I move to love through my life.
This does not mean I will not be diligent in my research and careful in my decisions. That I will not be attentive to those offering me alternative approaches to balance, strengthen and heal my body. That I will not be respectful of and grateful for the medical professionals as they share with me what they know, as well as their assessments and treatments for this party crasher in my breast. This does mean I am not going to operate from panic. Last week I got a call from the oncologist’s office. They scheduled an MRI for me. Efficient, I suppose, except they forgot to ask me before they booked it. They forgot I have a life. A simple thing, I know. No big deal. Why not change my schedule and keep the appointment? After all, it’s CANCER. Cancer is a noun, not a verb. I do not wish to start CANCERING. Call me crazy, but I sense the point where that noun-verb transition occurs. And I teeter there some days. Not in fear, but in the scramble for insurance coverage, in the assumptions made by doctors and their staff, in the measured urgency of loved ones not wanting to lose me – the way I lost Ray. I choose, daily, to be conscious of where that CANCERING point is so I don’t cast aside LIVING. Another verb. The medical machine whisks us through the door after the word cancer is spoken. (And how willingly we go because, YES, it is a scary frickin’ word.) Once we get through that door we start to lose our perspective. We forget we have choices that may be outside the realm of discussion among our providers. We forget we are the patients, the most important part of the recovery equation. Fear and urgency rule as we cast present moments aside while we aim for better days. I’m not a fighter, folks. And I am not fighting cancer – again. I am living – still. LIFE is my point. When I remember, I invite those who forget, to remember. When you remember, you invite those who forget, to remember. And when WE remember, we remember together – and it doesn’t get any better than that. That’s the point where miracles happen. Our journey continues ...
A long habit of not thinking a thing wrong, gives it a superficial appearance of being right, and raises at first a formidable outcry in defense of custom. But the tumult soon subsides. Time makes more converts than reason. – Thomas Paine
PS: Treat yourself and read the comments. There is some great experience and wisdom being shared! XO Sharing is caring. And feel free to subscribe.  

Life. Death. Breast Cancer.

Life. Death. Breast Cancer. I have no clever first-line hook for this post. And it won’t be neat and tidy with a beginning, middle and end. If you’ve spent any time here at all, you know I am not shy about sharing when life gets messy – though never for drama’s sake. God knows we all have our tribulations and don’t need another magnifier in the world.
A wise woman recently said it perfectly. If I am going to share the heavy stuff with you, it will be to build your muscle – not sink you.
When I posted about the only New Year's resolution you'll ever need back in January, I had no idea the hurricane that was mounting at sea or that there would be no stopping it when it hit shore. I also didn’t know how challenged I would be to catch my breath, let alone post anything in the messy room. I figured, when I could show back up here, I’d post about my beloved’s battle with a cancer found too late (that had metastasized throughout his body) and all the stuff you witness to in that agonizing race to buy time – at least enough time to digest the news. But then he died. Just 50 days after diagnosis. So, I figured I’d make my way back here and blog about death and grief and how precious life is and the things we say “Yes” and “No” to and all the silly stuff that captures our attention while the really important stuff gets lost in the hooplahah. But now I find myself in a most bizarre overlap. The cancer train has not yet left the station. It seems that I have breast cancer. That the lump they told me was benign in January, before the hurricane hit shore, is not benign now. It has grown and gotten greedy and is invasively feeding off healthy breast tissue. Another intimate life-long partner, challenged. Were it not for my journaling, my morning quiet time spent with God and His divine messengers, and the tribe of wise souls circling around me, I would have washed out to sea before the third tidal wave hit me. But I’m not drowning. I’m here. And I’m back. And I’m writing. My walk with life, death and cancer continues. And I have messy stuff I want to say. I awake with grief and grace, daily, in a scavenger hunt for gratitude and understanding. I am not in resistance – but am in persistence – as I prepare for this next round. It would appear that my life is in what marathoners call a “split run race.” (That’s when you run faster in the second half than the first.) By divine design no doubt. A sacred overlap, perhaps, with my beloved who is now assisting from the other side. I am the stuff of stars. Not cancer. And I will find out what this old girl is made of as I work to reconstruct my life in this next most curious chapter. So, get ready to build some muscle with me or unsubscribe – cause the messy room just got messier. Thanks for listening.