I’ve been lost in a circle of shame. Lost with untold stories. And my partner in crime is not here to release me. He died of cancer. I tell others that there is no shame in a mess. That it is all usable by the Divine. To turn that mess over to God and watch the miracles multiply. It seems I hold myself to another, less forgiving, measure. I found the quote above in a Somerset Life magazine that was tucked into a care package of goodies intended to help me heal from flu/bronchitis complications after my breast surgery. Dropped off by an earth angel who had no way of knowing the key to freedom her gesture – and this quote – offered. I was in agony. Not from the flu or bronchitis or even the breast cancer. They paled in comparison to the hurdle mounting within me. Survivor’s guilt had escalated to shame. And my grief was complicated by a relationship decision, made by Ray and I, to preserve the love between us. Our decision to divorce acknowledged both our stumble and our treasure, and embraced the best “save” we had with the information at hand. Some days it is a load to be the one left behind with that decision – knowing what we didn't know then. “You divorced. He died of cancer.” God grant me the serenity to share and shed my shame. The roots of the word shame derive from an older word meaning "to cover.” There are stories I desire to tell without covering, censoring or questioning myself at every turn. There will be no joy expressed in my healing work or creative play without owning this place where I stumble. “We divorced. He died. I got breast cancer.” How do I claim health for myself when I could not claim it for him? That’s a question that shame and judgment ask. Not reason. Not compassion. Not forgiveness. I am giving myself permission to accept that my guilt grew to shame for the years of divorce. I am letting go of the shoulda-woulda-coulda stuff. I am not going to layer pain atop more pain in berating myself for a messy organic progression of feelings – feelings that I can love you through but not myself. The "shush don't talk about it" shame train stops here. No more soul-crushing judgments on myself. They say we are only as sick as the secrets we keep. I tell stories to open doors, give permission, offer connection and invite forgiveness. I am grateful to have you witness my shame, released through this story. It is a story about life and death and love and forgiveness – and what it looks like to thrive while moving through the meSSy sTuFf. I am not telling this story alone. Ray is with me, looking over my shoulder. He is saying, “Honey. We made that decision together. And it did save US. We never stopped loving. That is our story and the one I want you to move forward with. I am not here in the guilt or the shame. My death freed us from those struggles. Please don’t carry that load. I’ve got this now. Let it go.” To be continued? I'm thinking so. Take a deep breath. Now exhale. That felt really good, didn't it? I always love to hear your thoughts, DEar HEaRTs. You matter to me! And I have no shame in admitting that! Mwah! 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.
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.
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.I’m following through on a decision for surgery this week with full knowledge that I will, no doubt, disappoint some folks before all this is over. I gain no pleasure from being in this position to disappoint. As a matter of fact, I have spent the greater portion of my life working to resolve differences so as not to disappoint. There is an irony that I find myself exercising my option to displease with a life and death decision. Who will be disappointed if I live – my way? Who, if I die – my way? I suppose that depends on how tightly the need to be right is clung to – your way. If you are someone who loves me, I know you’ll get around to understanding what doing this “my way” allows me to reach for – no matter how this goes. The angels gave me matches to play with in this life, death, cancer thing and I am learning so much while blazing this trail. And not just for me. (“Whoa. We gave that child matches and a blog?” I hear them chuckling.) If you are a distant-someone in my cancer circle and find yourself disappointed, perhaps you missed it back there somewhere. The invitation. What your path crossing mine was to give you. You may want to retrace your steps.
My decision is not one of surviving or dying; it is one of not diminishing myself while surviving or dying.And so, I am going in for reconstructive surgery this week, against the advisement of some and to the dismay and breath holding of others. Am I getting a rebellious kick out of saying that? No, I am not. Am I trying to prove a point in choosing the road less traveled on the map of current medical models for breast cancer? No, I am not. Am I pointing to the many shades of gray that I wish would be included in the medical model presented to me? Yes, I am. Can I afford to go against the medical model with my life? Well, that depends on whom you ask. Had I decided to follow the white coats and not the white wings, I would be somewhere around week 17 in a 20-week regimen of chemotherapy after which I would receive a 6-week course of 33 radiation treatments. Landing me somewhere in April to get my immune system back up before considering if I had enough skin left – after radiation – to start the many weeks of skin expansion necessary for an implant. Maybe, by late summer, I would be looking at a reconstructive date for surgery as I am now – with another 6-week recovery period after that. And on and on... But my decisions in this breast cancer journey are not based on guidance from out there. As a matter of fact, few of my decisions ever are. My job is to know myself and take every decision to God first. Then I listen. Sometimes, Divine Guidance comes as a direct hit – right up front. (Don’t you love that clear YES or NO?) Other times, I gather information and ask, then ask again until I get a LEANING that lets me know wills are merging in this team effort between God and Bernadette. And that is when my two cents starts to miraculously multiply. Do I hope I live through this? Yes. Am I afraid to die? No. Am I more concerned with thriving every moment between here and there? Absolutely. You were led to read this blog for a reason. This may not be about cancer for you. It may be about something else in your life. A decision you’ve made that you don’t have peace with. (Did you follow the tribe of opinions while dismissing yourself?) Or a decision you are about to make – and may be postponing. (Did you forget that white wings are ready and waiting to give you a lift?) Wherever you are with decisions, I am encouraging you to spend your first two cents on the God Sense within each of us that guides us on our way – and gives us peace with the road behind us. As a matter of fact, I have some extra change here. How much do you need? My pockets are heavy. It’s not about how it ends, DEar HEaRTs. It’s about how we get there. XO Bernadette To be continued... 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.
Before you judge something as less than desirable, consider that it might be an invitation to more than imaginable.
Jesus said to them, “How many loaves do you have?” “Seven,” they replied, “and a few fish.” Matthew 15:24Miracle making is muscle building. There’s a focus with Matthew 15:24 that doesn’t often get talked about. Jesus worked a miracle – yes – but he didn’t gather the fishes and loaves. He said, “Bring me what you have.” Think about that directive for a moment. Basically, he said, “Use what muscle you have to gather your resources, show up back here, and offer them to me.” He relied on the footwork of the disciples and willingness of others to share before doing his miracle-making thing to feed the masses. There was no credit card to save face. He didn’t reschedule for a better day or campaign for event sponsors. And he didn’t tell his disciples to dig deeper.
He worked in the present moment with the resources offered because he knew that, in the presence of less, more is called forth – the kind of more that removes our fears about less and loss.Where am I going with this? If you’re following my blog, you know it’s been a hell of a year. The shock of losing a breast and Ray to cancer challenges my corner of the world daily. When folks ask me how I’m doing in meeting my obligations, I joke that I have a real “fishes and loaves” thing going here. And, really, I do. What I need arrives in a way that allows me the activity/recuperation space needed to heal for the day, the week, the month – at hand. No more. No less. Every time a little nervousness sets in and I want to investigate exactly how this could be, my angels say, “Stop. Your less is God’s more. ReVEL iN ThAT.” “Use what muscle you have to gather your resources, show up back here, and offer them me,” is a simple formula that calls forth that which answers to the gnawing hunger of the crowd. When navigating through multitudes of less and loss, I can pick up my basket and look for a loaf of determination or willingness or gratitude – or even curiosity for how it’s all going to play out. What can I do today – can I offer today – in collaboration with the master mathematician who is happy to multiply goodness in response to my concerns? It doesn’t have to be big or grand. It can be small and simple. This is the zone where working with less offers me – and you – opportunity for more than the more we customarily shortchange ourselves with when reaching into our own pockets. If you are where I am – struggling to start a new chapter in life – this is particularly good news. Less resistance. More assistance. Less distraction. More attraction. Less busyness. More focus. Less panic. More peace. Less judgment. More understanding. Less fear. More curiosity. Less doubt. More amazement. Your turn: Less [________]. More [________]. You are enough right where you are. So, before you whip out that credit card, maybe grab a basket and work the crowd with me. And, remember, when we make room for less, more can happen. This is the place of miracles. XO Bernadette By The Seat Of Your Pants My little eBook comes with LEsS for your mORe – and is my GiFT to you! Download to your device or print it. No hitches. Enjoy! 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.
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 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