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.
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
“Without adjuvant treatment local regional progression, distant spread and death are risks.” What would you do? My breast surgeon was expecting to find a 3.5 cm tumor – but found a 4.8 cm tumor instead. Pathology later uncovered an additional 2 cm tumor – hidden in the dense breast tissue that she removed. No indication in any of the many imaging tests prepared us for either surprise. Sentinel lymph node report, clear of cancer. Nine additional lymph nodes clear of cancer. Blood also clear of cancer. My surgeon said I’d made the right call to go for the complete mastectomy with no nipple sparing as the tumor was irregular in shape and attached to my nipple. (Imaging tests had indicated that I was a candidate for a lumpectomy with radiation. Hmmm.) Good news so far, right? Always nice when I make a good decision and God knows this was not an easy one. (See Kiss My Breast Good-bye.) It appears, however, that my life and death, decision-making muscle is being put to the test once again. Seems I have no clean margins. Or, in doctor-speak, margins of the tissue removed from my breast test positive for cancer. So, though the cancer party-crasher stayed local and never left the house, it played to the edges of the walls that contained it. Doctors don’t like dirty walls. I get that. My breast surgeon gets it, too. That I am disappointed because, all along, I have been weighing in on quality of life issues and risks that can present down the road as a result of invasive cancer treatments. And that I have been nutritionally proactive with alternative approaches since diagnosis. (A decision that, I believe, kept the cancer contained in the breast – through months of delaying insurance coverage complications, I might add.) But her job is done. She took all that she could take – short of muscle. Now I must consider what the radiation and chemo oncologists bring to the table.
Full breast radiation (hello, it’s gone) with 20 weeks of chemotherapy and 10 years of hormone treatments.Still leaving me with a 10% chance that the cancer will return within 10 years and not guaranteeing complications will not be present in other parts of my body as a result of the triple-treatment hit. I am really wrestling with this decision, guys. Focusing on the fact that the tumors and all my breast tissue are gone, this feels like they are engaging the canons where a few well-placed snipers might do. But there don’t seem to be any snipers available. I know of women who are going through this cancer treatment regimen right now who still have their breasts with sizable tumors. (My prayers go out to those of you who have already made these tough decisions. You have my respect for the courage you express, everyday, to show up for yourself and your loved ones in the ways you have decided are best.) Remember when I told you that if I blog about ReaLLy meSSy STuFF it will be for us to build muscle? Well, roll up your sleeves because I’m not playing alone. This is where my decision-making drama with cancer becomes your decision-making drama with [fill in the blank.] You make decisions every day. Now, what if every decision you made mattered – even ones that are not in a life or death category? Like the preference ones that say, “I want this. I like that.” Or the reaction, “Stayed up too late. Hit snooze. Reschedule that appointment.” ones. Even avoidance, “Let someone else make that decision.” ones. And lets not forget those coin-flipping, daisy-petal-picking decisions. Most decisions move you easily along while on cruise or autopilot. Others put you on notice, requiring stand-up attention. Sometimes, you know why you made a particular decision. Sometimes, you are clueless as to the criteria that motivated you. (Was alcohol involved?) But here is the one, most consistent thing about any decision you will ever make – and why you want to pay attention. You will live with the consequences. Life is an assumption we make while dying. Death is an assumption we make while living. Your decision.
When your decisions no longer matter, you stop living.Make a decision to pause for a moment and take that last sentence in. I am making a decision to get comfortable with the question mark that now resides where my breast was. It offers a gift that reminds me of the preciousness of each day – found in every decision I make. How will I use my time today? How will I love today? Who will I laugh and cry with, today? And, as a nutritionally proactive woman who intends to beat this thing as naturally as she can, what will I eat and not eat that will strengthen me, today, while I wait two weeks for the results of another test that I asked the oncologist for? Why? Because, no matter who rolls the dice, I will be the one living with the consequences of my next decision. Not my doctors. I’m not an expert. I’m just a messy muse blathering on in a messy room – with dirty margins. Thank God, I don’t need to be an authority to make decisions matter. I just need to be the author of my own life. I have no more time to entertain ghostwriter decisions made on my behalf – unless they come through Grace and The Divine. I have a proposition for you. Walk alongside me for the next few days and take note of your decisions – like they matter. Consider three decisions – big or small – that you will make matter this week. And you are welcome to share them in the comments below! Here are some decisions that mattered to me this week.
- Helped a friend organize her studio so she can move into the next level of her business. I played prima donna while “helplessly” sitting, pointing and suggesting. She did the heavy lifting that doctor's orders wont let me do. (5 lb. limit.) Amazingly, I found I can be a prima donna and maintain a friendship.
- Gave myself a two-hour break from this dang compression bra that I am supposed to wear 24/7 for 6 weeks. I promise you, I did not do jumping jacks. And my poor right breast was very grateful.
- Standing by my June decision to not feed the cancer by staying off dairy, meat, and refined sugar. I feel so much better and, surprisingly, not deprived at all. I made another decision that I did not have to be 100% perfect about this. For me, the need to hit the mark perfectly originates from fear – thus feeding it. Besides, 95% lets you have dark chocolate and eat out with friends.
- Asked for the ONcoType DX testing, even after the oncologist said it wouldn’t mean anything because my margins were dirty. He finally understood that it was an important part of my decision-making process.
- Met with a Doctor who specializes in oncological physical therapy to help with the aftermath of chemo (should I go that route). Right now we are focused on reclaiming range of motion in my mastectomy arm – and NOT getting lymphedema.