Friday, May 4, 2018

Musings: On Life, Acceptance, Research and Being Enough

"Life is what happens while you're busy making other plans."

The thing is, I've not had a single moment over these past couple of years where I've had the luxury of making any plans. It seems my life is being planned by others ... by the poor judgement and yes, at times vindictiveness of some, forcing me to live in a place of reacting, responding; by the needs of loved ones that require my attention and/or involvement, something that I do without a scintilla of hesitation and with my whole heart because it's who I am and I know if the tables were turned, I would be falling into their arms for help and those same people would be by my side with no questions asked; by events well beyond anyone's control, deaths both sudden and unexpected of some, and of those who were stolen from this life as I watched as disease ravaged their bodies until they drew their last breath. I'm just scratching the surface in these observations.

If 2017 was one of the most difficult years I've ever experienced, now that one-third of 2018 is in the rear view mirror, I realize I'm still not in plan making mode. I'm getting there but I've learned many wonderful lessons in all of this. I live in the moment and for the moment.

I moved into my new home a year ago. It's furnished with everything I need but until my financial situation is resolved, my hands are tied and decorating isn't in the cards. There are things I want to do in here, but they will wait. I will wait. And, I'm ok with that. I have the ocean, unobstructed from view, and I delight in glancing up from every room into which I walk to see the waves crashing on some days or barely lapping the shore on others. I realize the many moods of the ocean is a metaphor for my life. Calm and still, foggy and barely visible, choppy and uneven, or furiously pounding the shoreline, I know that whatever is happening on any given day, it is just for a short period of time. As my dad would so frequently say, "Life turns on a dime," and the ocean is a good reminder of exactly that.

I've experienced the joy of watching schools of dolphins dancing their way through the waves. The whales put on quite a show for an entire month just before the arrival of winter, which for the records, was brutal. They are back again for their last cruise off the southern most shores of Long Island before heading out to the deep waters east of here. Yesterday, in a most unexpected surprise as I was sitting on the terrace, one of them playfully jumped out of the water. Signs were up about a "resting seal" cautioning the need to stay within 150 feet. One morning when I was having my coffee, the seal who was being tracked by marine wildlife, was resting on the sand right in front of my terrace. It was a treat to watch as he occasionally lifted his head to see what was going on before settling back in to rest a bit more. It was even more of a treat to watch how gingerly the wildlife team coaxed him back into the water, after three plus hours. I take none of these moments for granted. I never know what I might experience on any given day: the great, the not so great, and the downright ugly.

So I just be. Expect nothing. Anticipate less. Settle into that space of acceptance. Fully embracing, quite simply: I am enough. Everything I have is enough. By refusing to allow the toxicity of others to steal that from me, difficult though it can be in some moments, by living in this place of authenticity and truth they are no longer just words, but the mantra by which I am choosing to live the life that I have carved for myself.

Yes, I am committed in so many ways to many projects that I find myself immersed in. They sustain me and fulfill me in ways that I can't even begin to describe. April, in its entirety, was consumed with conferences and meetings, preceded by pre-meeting planning, followed by post-meeting next step planning. Simultaneously exhausting and exhilarating, the wonder of reconnecting with people I've missed for many months, beyond social online channels, finally able to sit together at dinner tables, in meeting rooms, or on barstools rejuvenated my soul and every fiber of my being.

The SWOG meeting and the AACR Annual Meeting, in some ways, were difficult. Reminders of last year were everywhere I turned and more than once, I swallowed back a bucketload of tears. Surrounded by people who mean so much to me kept me distracted for nearly two weeks. Distracted from the reality of Lori's death and Jack's death - and the deaths of too many others - but they were my "go-to" people as I navigate unchartered and unfamiliar waters without their words of wisdom, encouragement, or at times, colorful indignation at the ongoing attempts being made to undermine me, to assassinate my character.

I can recall at least two days upon arriving home where I crashed. Hard. Snippets of memories from last year replayed in my head. Two days, I awoke with zero energy. After walking in circles for a short period of time after a restful night's sleep, I let it wash over me and beyond showering and brushing my teeth, those days were spent doing absolutely nothing. I had nothing to give, not to anyone or anything, so instead, I chose self-care. Thinking: Tomorrow, I'll feel better and today, I don't, and I am enough, I gave myself completely guiltless permission to feel those feelings, to be gentle with myself.

Cancer is traumatizing. I heard someone say in a recent discussion at one of the meetings, the word, in every language, is one that evokes the highest level of terror and fear. While supported by so many loved ones, the person who should have been by my side, the person who vowed to stand by my side in "sickness and in health" was only speaking words in that moment. When it came time to take action, those actions were to berate, to belittle, to betray telling far too many people, "Cancer changed her, she's not the same." Knowing today that some of these people were merely casual acquaintances, more than a few with whom he was intimate while still married and when I was on chemotherapy and having a host of surgeries performed, was a severe blow, one that struck me in the deepest core of my being.

Piece by piece I've managed to pick myself up. I'm still learning to deal with all of the collective trauma that I now understand is what is referred to as complex Post Traumatic Stress. Apparently, everything I have been doing is rooted in the concept of the opportunity for Post-Traumatic Growth. I'm still refining my path in this advocacy space and there are many exciting things happening. It seems in this moment, much of it is behind the scenes.

So many areas speak to me. We need to forge more meaningful partnerships between patients and scientists/medical providers. I am fortunate to have connected with many who realize the value of these partnerships. We need to address needs across the entire cancer continuum, from the moment of diagnosis and for the rest of our lives. Just because active treatment may be completed, there is fallout-both physical and emotional. I need not look beyond one simple step of separation, to my own mom, to attempt to understand the minefield that is life with metastatic disease. We must do better for all.

In this moment, I choose to acknowledge with such deep gratitude, two things. First, a big thank you to Healthline for acknowledging my writing efforts for the seventh consecutive year by including this blog on their list of Breast Cancer Blogs. Most importantly, I am ever so grateful to organizations like the NCI, SWOG, and the AACR for their steadfast leadership in advancing our knowledge in the area of cancer research to benefit patients and for allowing me to play a small role in their efforts. They, along with so many other individual researchers and a host of additional organizations work tirelessly to help in efforts to one day prevent at least some cancer types from ever occurring, to establish better treatment protocols for those of us diagnosed with cancer, to save the lives of those living with advanced and life-threatening cancer, and to improve the lives of every person living through and well-beyond cancer treatment.

For the record, May is National Cancer Research Month. While I am Awareness Weary, research does save lives and this is one initiative that is highly important. All of Us can play a role in whatever way speaks to us-even if that role is simply sitting beside someone offering silent and unwavering support for whatever they are experiencing in that moment.

While I had no idea where I was going when I sat down to write, and no idea how to end this particular post, I'll just offer words of encouragement to everyone. No matter what your space or place, Focus Forward. We can't undo the past, life offers no opportunity to redo things for which we may have regrets. But, life does allow us to learn and build upon our experiences and blaze our own trails.

I Am Enough. And So Are YOU.

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  1. Beautifully said and I am always here for you. xoxo

    1. I know that, mom. And I love you more than words can possibly ever convey. xoxo

    2. Thank you for writing this and sharing it. We gain so much from each other's shared experiences.

    3. We really do. I have found this is the best way to really connect with others and learn from each other, too.

  2. I love your blog. This post so resonates with me. Cancer is absolutely traumatizing and can be a cruel thief of optimism and hope. You are not alone.

    1. Thank you so much for sharing this with me. Validation on every level has helped me center myself in so many ways. You're not alone, either! <3

  3. I Like the content of your blog may be useful for visitors .. success always


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