Thursday, May 31, 2018

Go Commando!


I’m going commando today.

Last week, on the five-year anniversary of my excisional biopsy, I announced I’d lost my Big Girl Panties and was on the verge of an ugly cry.

Today marks the five-year cancerversary of my diagnosis. I’ve already had one cry. It wasn’t ugly. It was actually kind of beautiful. I’m happy, I’m sad. I’m hopeful, I’m anxious. I’m mostly all of these things on a regular basis but

So how do you recover after you announce to the world that you lost your big girl panties?
You have that big ugly cry.
You compartmentalize the day to day from the big picture.
You take some time to center yourself.
You read the messages of support and love, many from people you’ve never even met but who have experienced similar “lost panties” moments.
And then you announce to the world that “Going Commando” is the BEST. ADVICE. EVER.

Actually, I don’t know how YOU recover, but that’s how I’m getting back in the game.

I am now on my way to the world’s largest oncology conference feeling a complete sense of gratitude, empowerment and excitement. Basically I am feeling the EXACT opposite of how I felt just over a week ago.

My actual “diagnosis cancerversary” involved some tears. Some quiet acknowledgement. A LOT of outside walks. And, perhaps the most healing, speaking with those who are smack dab in the middle of their own $hitty cancer experience.

I mentioned before that the best advice I’d gotten when I exposed all my vulnerabilities was to go without the constraint of feeling like you had to have it all put together.

While that was certainly the most humorous and the phrase I’ve repeated to myself multiple times a day for a giggle and a reminder, the truly best advice was from a woman I’ve never met, “Treat yourself as you would one of us.”

And yep, I’m on the verge of tears as I type those words. (It’s gonna be a long month evidently)
The truth is I walk around explaining that we all just want to be seen, heard and held. I just forget sometime that it’s okay to just let others hold you. 

The best gift I received? Acceptance. 

Most days?
Onward and Upward.
To Infinity and Beyond.

But some days?
Go Commando.
Just Get To Tomorrow.

And everyday “Treat yourself as you would one of us.”


Wednesday, May 23, 2018

Big Girl Panties and an Ugly Cry


I lost my big girl panties and I’m on the verge of an ugly cry.

For whatever reason, I am struggling and have been struggling for the past few weeks. 

May is the start of my “cancerversary” season.

In other words, the “For whatever reason” is really “Because of effing cancer.”

And I have a hard time saying this out loud. Because this season marks five years and popular opinion is that this should be a veritable celebration of achieving ‘good statistic status’.

But, let’s be honest, cancer is as much a mindf%#k as well as a physiological disease.

Today marks five years since my first excisional biopsy. A big thing that became a small thing that is now part of a huge thing that I’m still trying to integrate into my life.

Today is one of the first of many babysteps that will land me square in the FIVE-YEAR CANCER SURVIVOR club.

I thought I’d processed the handling of this milestone already.

I thought I was ready to take my deep breath; acknowledge my fear and pain; acknowledge the forever guilt in dragging my family into the world of cancer; acknowledge my attempts of turning a crap diagnosis into a meaningful path forward.

I really thought I was ready to nod my head at this series of days and weeks and then proceed in a way that celebrates the beauty of each day and also respects that every day in good health is a gift not afforded to all people.

I am so NOT ready for that today.

I’m pent up and nervous about my own future health. I’m riddled with guilt over not being able to keep my neuroses to myself. I’m sick in my gut watching the suffering and premature demise of others not so fortunate as myself. And I’m angry with myself for not making the absolute most of every day.

I don’t need anyone to fix this for me. I don’t need anyone to blow perfume up my arse. 

I think I just need to acknowledge that, despite my current good health, remembering this date five years ago makes me sad and scared and angry.

Typing relaxes all my muscles and now that ugly cry is spilling out onto my keyboard.

When I’ve wiped everything down I’ll start looking for those big girl panties. 
Or, maybe, I just won’t wear any today.


Monday, May 7, 2018

A Little "Just to Be Sure" Scanxiety



There have been so many times in the past few months that I’ve composed blogs in my head and thought – I should really write that down. And each one of those times I’ve been too busy to write prioritized other things ahead of writing out whatever was in my head.

Today I’ve not much of an excuse. I just returned from a follow-up oncology visit and have just under two hours before I’m back at the medical building for a breast ultrasound. We’re taking a better look at what is likely a lymph node on the side of my right foob. It’s 99% a lymph node but doesn’t have the “fleshy” feel of my other lymph nodes so Dr. L wants a better look.

In a few hours we’ll have confirmed it’s just a healthy lymph node and I’ll get on with the day-to-day but, at this very moment, I’m feeling that familiar scanxiety.

Amusingly enough I was actually completely laissez-faire about the whole affair during the discussion with Dr. L and the scheduling with the imaging department. I was also fairly meh about things for about two hours afterwards. But now, at home, waiting to return for my appointment and trying to get some work done, I’m a little unnerved.

Thankfully I now know better than to waste time and energy rationalizing my emotions and I’ve learned the most valuable thing I can do for myself is write it all out. This is reality. This is reality even after almost five years with no evidence of disease. I’m not a worrier or a hypochondriac. I’m just a woman whose body once betrayed her by growing a mass of rouge cells that, if left unchecked, have the potential to bring down the house.
I’m just a woman who felt like she was following all the health rules and still found herself at the short end of a cancer screening. 
I’m just a woman who is grateful to be alive and grateful to have her health. 
I’m just a woman who is, on a daily basis, cognizant that others my age and with my disease origin, are being devastated physically, emotionally and financially. I’m just a woman who says goodbye to friends at an inordinately rapid rate because of cancer.

I guess that’s what scanxiety is for me these days – going through the “oh shit” and the “what if” all the way to 114 a day die from metastatic breast cancer. Going all the way to Diane and Beth and Beth and Angela and Lori and Janet and so many others. And, most recently April, Dianne and Vicki.

So, when a routine oncology follow-up turns into a “let’s just make SURE it’s nothing ultrasound appointment” there are a lot more things for me to unpack.

Thanks for letting me unpack them in front of you and thank you for letting me react to my reality without judgment.

I am just scanxious and that’s okay.

  

Thursday, February 8, 2018

Sometimes It’s Just Sadness



My grandfather died yesterday morning.

Bumpy was 92. Almost 92 ½. He lived a “good life.” He was loved by many.

He was loved by me.



I’m used to raging against the premature death of friends from the monster that is cancer but now I sit here simultaneously sad and yet acutely aware of, and incredibly grateful for, the fact my grandfather had the opportunity many are never afforded – time. 
I am grateful he had 92 years on this planet.
He had TIME to find a life partner. He had TIME to have children. He had TIME to see his grandchildren grow and even TIME to see his great-grandchildren grow. He had TIME for adventure. He had TIME for travel. He had TIME for hobbies.

And, at the end, he felt he had too much time. 

He was ready to go. He had more time than Grammy. He had more time than his friends. He had more time than either his body or his mind could manage.

With advancing dementia and retreating physical ability, he was frustrated and, at times, sad.
Having visited with him in December, I am aware that he had absolutely no desire to reach 93.
In other words, I know that Bumpy lived a long life and died a peaceful, natural death but I am still feeling a loss.

And a sadness.

This may seem like a no-brainer to many people, “Duh, your grandfather just died. Of COURSE you feel sad.” But my brain is telling me I need to stay in the “grateful for a long life space”. My brain is reminding me that everything and everyone dies. 

My brain is actually kicking me under the table hissing, “You are being selfish; his quality of life was poor and he was suffering.” Granted, the brain talk is having some effect since my sadness is not the devastation I feel when a young mother dies of cancer or the devastation I feel when cancer kills another friend before she can celebrate her 40th birthday, but it remains a pervasive sadness nonetheless.

Normally, when a friend dies, I just mull through my emotions until they channel me toward action. I would process my grief by typing, exercising, intellectualizing and allowing myself a maximum of 15 minutes of crying the shower.  I would think about the support I need/want/deserve but I would refrain from reaching out to avoid burdening others with my sorrow until I was strong enough to hold theirs.  

In this case, I began to belittle my own grief by reminding myself “this isn’t about you, Stace” and reminding myself to be grateful for the nine plus decades of time he had on this planet.

And then I did something wildly different.

I actually told people that my grandfather died.

I told people that I was sad.

I reached out to a handful of people that I knew wouldn’t freak out with niceties or try and blow perfume up my arse but instead would offer just the head nod, the warm embrace, the validation and the grounding that I felt I needed.

(My gratitude to you circle of peeps is immense. Truly.)

This time I shared my grief by reaching out. Instead of worrying about the burden my tears placed on other people, I allowed myself to be vulnerable, even needy. This new approach meant hours of fielding phone calls and sharing grief and gratitude with friends and family.

Sometime around noon I realized I was actually navigating my grief rather than pretending it’s not on my roadmap. And I’m crowdsourcing my support.

And yet. Something was stuck. Something felt amiss.

At the end of the afternoon, I was grateful but still sad.

And confused. 

I felt I had already recognized my emotions but still felt that stuck feeling. 

I felt at a loss for what to do next.

And then while sharing some of my fonder New England memories with a sage co-worker, I felt that flood of emotion again, “I just feel sad,” I said.

His reply was soft and his eyes were filled with compassion. “Well then just sit with that,” he suggested.

I crooked my mouth (and probably my eyes and head) thinking, “Hey, that’s what I say to other people. How are you using my own words on me? And, oh by the way, I HAVE been sitting with it. For like eight hours.”

Instead I said, in all honesty, “But I’m used to this sadness triggering something else. Triggering something for me to do. I’m not used to staying in the sadness emotion. I'm used to channeling my sadness into action.”

Instantly I recognized that the premature death of friends has been a driving force in what I choose to do day-to-day with my advocacy work. Advocacy work wrecks me and fuels me - mostly at the same time.

But Bumpy’s death? The loss of my last living grandparent? The loss of a man who regularly had a smile on his face, a witty comment on his tongue and could make just about anything with a jigsaw, hammer and nails? The loss of a man who for many years, I thought was the tallest man on Earth? The loss of a man whose mantra (with a wife and four daughters) was “Yes Dear.”? The peaceful timely death of my grandfather who, by his own admission, had enough TIME on the planet? 

Bumpy’s death leaves an enormous gap, feels like a tremendous loss and catalyzes an enormous wave of memories but there no rage. No anger. No motivation.  

“There are no stages!” I thought to myself.

Typically I feel myself going through all the seven stages of grief. Quite frankly, on an average day, I feel like I’m living in all seven stages simultaneously. And then I move onto the action part of my personal grief roadmap.

But for me, when a good man dies a good death at an advanced age, there is really no room for shock or denial. When your 92 year old grandfather has a DNR in place and his quality of life is being reduced by the limitations of his body and dementia, there is simply no need for bargaining or anger when he peacefully takes his last breath. There is only room for fond memories, tremendous gratitude and sadness that seems to want to hang around for awhile.

...

My grandfather died yesterday morning.

Bumpy was 92. Almost 92 ½. He lived a “good life.” He was loved by many.

He was loved by me.

I am grateful. But I’m still sad.

And now I’m gonna sit with that for a bit.




Tuesday, January 16, 2018

Full Circle in Five Years


I was gluing green ‘fish scales’ onto a long black felt singlet when the phone rang on January 16, 2013.

A cell phone call from my mom, at nearly 9pm was unlikely to be good news but I made no real assumptions.

“I have breast cancer,” she said.

There were no auditory tears and there was no catch in her voice. She was matter-of-fact in her sharing of this information. But it hit me like a ton of bricks.

Within a week I would request a leave of absence from my job in Silicon Valley. Over the next few weeks, I would investigate breast cancer diagnoses, treatments and prognoses online. I would find #bcsm and #lcsm on Twitter. I would learn about TDM staging and the difference between a lumpectomy and a mastectomy. I would read about BRCA mutations and check out books written by previvors.

Not even a month after my mom’s diagnosis, I would fly to Texas to visit with her surgeon at the lumpectomy post-op appointment and learn first hand about the devastation in hearing the words, “We didn’t get clean margins.”

And then her chemo began, and I made another trip to Texas for the obligatory shave the head event (and dye my hair with a pink streak).

Mere weeks later I would receive my own cancer diagnosis.

The trajectory from that date five years ago to today has been dizzying and surreal. I knew from the very first day after my own diagnosis that something good had to come out of the shitstorm that is a mother-daughter diagnosis. And yet I don’t really believe things “happen for a reason.”

Instead I believe “things happening creates a reason.”

I never returned to my job.

Instead I accidently created a new one.

I began consulting quite by accident when someone, after a lengthy conversation regarding gaps in the healthcare system morphed into my ideas around building scalable, repeatable models of patient engagement. And then he asked me what my hourly rate was.

In the years since, I have become a vocal voice for health education, true shared decision making and patient engagement across the cancer continuum. I have elbowed my way into medical conferences to learn the latest in research, treatments and outcomes. I’ve brought the reality of survivorship to those in digital health and diagnostic testing. I’ve advocated for a transformation to a proactive, wellness-based healthcare system from our reactive, illness-based system. I have shared my experiences far and wide - sometimes as the token patient on a stage filled with providers and sometimes as a voice representing a whole community. I’ve spent time on Capitol Hill advocating for policies that support the short and long term needs unique to people with a cancer diagnosis. I’ve connected people to knowledge and people to organizations and amazing people to amazing people. And, most importantly, I’ve met some of the most amazing, brilliant and driven advocates that I’m now proud to call my friends.

And today, exactly five years to the day after I received that phone call, I am joining a mission-based start-up company intent on changing the dynamic for cancer patients and their community of caregivers via a combination of empathy and expertise.

I suppose it’s not accurate to say that “I’ve come full circle” since, in all honesty, the circle I’d become accustomed to legitimately blew apart on that day five years ago.

But I do feel circle-like today. A single devastating phone call was not the end but rather the beginning. Today I feel whole. I feel complete. And, most of all, I feel deeply grateful.




Monday, October 30, 2017

Please Don’t Look Away for Goodbye


While birth and death are two things that unite every single being on this planet, our society tends to celebrate one and fear the other regardless of its inevitability.

My friend Ellen died on October 4th. Metastatic ovarian cancer killed her. Unlike many of my other “cancer friends” she is someone I was friends with BEFORE cancer was diagnosed in either of us.

She called me when she found out in 2015.

We shared all the appropriate swear words. I answered as many of her questions as I could and connected her with individuals and organizations that could help us find answers for the rest. I gave her head covers and peppered her with details about the clinical trials she was interested in learning more about. I met her oncologist to help ask some of the questions she was concerned she wouldn’t remember and I sat with her during one particularly frustrating chemo treatment. But I didn’t even begin to imagine the most valuable gift I would give her, and she would give me, would be our final goodbye.

She rocked surgery and chemo but knew something was off about four months after her treatment ended. A scan six months later revealed a recurrence. And that recurrence was soon metastases. And then we began searching for trials in earnest.

We saw each other only occasionally but we texted each other often.

She was a force to be reckoned with on so many fronts and her approach to putting cancer in its place was no different.

As treatment after treatment failed, we started to talk about her hopes, her fears and how to get the people she loved most to address those with her. She didn’t want to die but she sure as heck had ideas about how she wanted to go.

After some particularly debilitating side effects, she looked forward to finding the ever elusive next potential treatment after October 1st when she had recovered from a cancer-related surgical procedure. But cancer is a wily beast and a number of complications put her in the hospital and on a ventilator just days before that appointment could happen.

While I expected she would not respond, I wanted her to know she was on my mind so I continued to text her in the ICU. And one day, she responded.





I cackled aloud receiving her text, imagining her slyly sneaking her phone and trying to text around the ventilator I knew she was still not happy about being attached to, and I responded that I'd love to see her if she had the energy. 

I am always cautious about inserting myself into situations where I may be more hurtful than helpful. When someone’s time on planet is so limited, I want to respect there is a priority order to energy and time spent with others.

But, after a few days and a message from her husband that she was moved off the ventilator and breathing on her own, I stormed the hospital.

I found her in the courtyard with family. She was unable to speak (not aphasic, just throat irritation from being intubated) and visually aged.

But she was lucid. And she smiled. I’ll never know whether the tears were happy or sad but I imagine they were a little bit of both – much as my sobs were on the way home.

I was able to tell her I loved her. I was able to tell her I was proud of her. I was able to tell her a short story about how my children were absolutely ready to look out for her son.

And I was able to tell her goodbye.

There were no illusions; that 90 minute visit would be the last time I would see her. She was afraid I would leave and so I stayed until we had shared our words and hand signs and her eyes began to close. That is a powerful moment - the extent to which I am unable to convey in words. Minutes of no words, just eye contact. Just facial expressions. Just being with someone and assuring them you remember all the things from all the conversations. Promising that you will continue to advocate on their behalf. 

Just seeing, feeling, holding space for and with an amazing energy and touching a soul for the final time.

I walked away with tears but so full of gratitude for the opportunity to say ‘all the things’.

I texted her the next day, well aware she would likely never see the text.
But she did. And she sent me one in return.



An advocate until the absolute end.*

She died fewer than four hours later.

I am grateful beyond words to have been there until the end. So grateful for the chance to say goodbye.

So please, never turn away. Bear witness to life. While that shell of a body may not be the body you remember, that person you love is inside. Be with them until the end and that time will be a gift for you both.




*I have convinced myself, and no one can convince me otherwise, her words are “You get it.” And with those words and that image, she’s reminding me to continue to speak the realities of ovarian cancer to catalyze more efforts around improved screening and treatments.


Thursday, September 28, 2017

Even Superwoman Needs to Feel all the Feels


Today actress Julia Louis-Dreyfus announced that she has been diagnosed with breast cancer.

As a woman just over four years out from my own diagnosis day, I am filled with only empathy, love and light for Ms. Louis-Dreyfus. I don’t know her or her work (yes, I am one of perhaps four people on the planet that has not seen an episode of Seinfeld) but I know she has just joined a community that she never wanted to join and therefore only partially understands and may not even know exists. She is likely in that whirlwind time where everyone is trying to figure out up from down.

Cancer is sneaky bastard and all-consuming in that way.

I respect and applaud her openness with going public with her diagnosis. With one tweet she educated thousands, if not more on a single stark reality of breast cancer – it affects one in every eight women.


Sharing your story to educate others is a powerful too and being vulnerable to the world with your private reality is well… a vulnerable kinda place. I’ll leave my gratitude here for her and for all of those that lend their voices in an attempt change the cancer narrative.

As one would expect, messages of hope & strength permeated the tweets aimed at or in support of Ms. Louis-Dreyfus (what is WITH my formality today?!?! Julia, I’m calling her Julia) but one tweet caught me in particular.


And so my fingers typed what was in my heart and mind.


Cancer sucks. We all have choices on how we walk, run, dance, roll through the days of diagnostic testing to determine and begin a treatment plan. There is no “right way” to do cancer. And any way is hardwork. As someone who grabbed onto the cancer arse-kicker personality, I also know that maintaining that front can be challenging. Dealing with your own fear, managing the fear of others around you and trying desperately to ‘win’ is exhausting.

Balancing work, family, friends and personal sanity through life in general is hard. Really hard. Balancing all that in addition to facing your own mortality can, some days, feel like an exercise in existential Tiddlywinks.

Four years ago I fed off of positivity. And yet I had, and still have, those days. On those days, especially after all of the well-meaning but pressure-filled “You’ve got this girl” messages, it is hard to show and share your fear. And some days those messages feel impossible to live up to.

To put it bluntly, cancer is a mindf*!k.

Some days you feel like a cancer patient, other days you feel like a rock star. Some days you do feel like you’ve ‘got this’ and other days ‘this’ absolutely and unequivocally has you.

In my opinion, the absolute, without-a-doubt best ever support you can provide anyone going through a serious illness is to allow them to feel all the feels. Allow them to share their desperation with you. It can be hard to listen to. It can be hard not to try and make yourself feel better by blowing verbal perfume up their ass.

But you don’t have to have the words. You just have to have the space. You, as a supporter, need to sit with your own uncomfortability sometimes. Just listen. And then, when the time comes tell me what you know I need to hear - that you heard me, that you listened.

Tell me you’re proud of me. Ask me what I hope for. Ask me what I’m afraid of. Ask me what I think I need – and be fully prepared for me to have no flipping idea.

Love, light and glittery unicorn flatulence is awesome. But all of us need those souls in our lives that can suspend their own fears and anxiety to just listen, to just sit, to just validate fears, anger, confusion and fatigue. Can you be that person to someone else?


I sure hope so because even Superwomen wants and needs to be seen, heard and held.