Friday, February 15, 2019

In Between Exhales



In times of uncertainty I hold my breath. Figuratively of course, otherwise I would have passed out long ago. And for the past three days I found myself in between exhales.

I started figuratively holding my breath a few weeks ago when my period came and went with minimal fanfare. Heavier than usual but still in the relatively predictable range. And then the spotting started. Random.

Perhaps if this hadn’t been preceded by heavier and heavier periods, I would have ignored it.

Perhaps if I hadn’t spent four years, one month and nine days taking Tamoxifen, I would have ignored it.

Perhaps, and mostly likely, if I erased the last several years from my knowledge base, I would have thought this in-between bleeding was annoying at most. A precursor to an early menopause perhaps.

But I cannot erase the last six years. The last six years was about cancer. My mom’s cancer. My own cancer. My friends’ cancers.

Living it and learning about it. Losing friends to it. Trying to change the way we treat it and Learning about the drugs that keep cancer away and simultaneously elevate one’s risk of endometrial cancer.

And so, denial by the wayside, I penned an electronic missive to my doc with all the details.

I expected a response to the effect of, “Welcome to your forties, this is totally normal.”

Instead I received, “I recommend we do an endometrial biopsy.”

And the breath holding began in earnest.



Thankfully when I finally decide to address an issue*, I do it as swiftly as possible so the appointment was a mere 24 hours after my note to my doc.

In the morning when my husband asked me what was on my agenda, I came clean. In steps.

“I have a doctor’s appointment.”
{pause}
“My annual. Well, sort of my annual.”
{pause}
“Well an endometrial biopsy.”

And then the rest came tumbling out.

I hadn’t planned on hiding the appointment but I hadn’t exactly planned on sharing it either.

Two years ago I had some random pain. My oncologist recommended an ultrasound and we found some cysts. Complex cysts. We waited a few months and scanned again. That waiting was one enormous breath holding activity. And no fun for anyone.

Just last week my daughter brought up that period of time. And the fact that we were all holding our breaths.

So, two years later, when faced with a similar scenario, I made an executive decision to keep my concerns and my neuroses to myself.

Unfortunately my children are old enough to be online so putting out a blog post without sharing the reality first is a definite no-no.

This is the no-no that I would have been committing had I posted this days ago when I actually wrote it!

After a series of random texts to a dear friend, I picked up the phone and called her. We chatted for two hours about life and work and kids and then, less than an hour before my appointment I was left to my own devices sans distractions.

I sent a quick email to my BAYS community with little detail but with a humble request to direct some good juju my way if they could spare the energy. By the time I checked into the appointment, my inbox was filled with good momo, virtual embraces and love.

For those of you who are reading this post looking for the 411 on an endometrial biopsy, you will be disappointed. Procedures are different for each person so I’ve no interest in either scaring someone or alternately underselling the experience. Bottomline? I showed up. (I did rate my visit tho...)

And was able to exhale with, “At least I’m addressing it. Whatever ‘it’ is.”

My doc was clear that results could take ‘up to a week’ so I was preparing myself and my shallow breathing for the next week until I get the “everything looks normal but it’s great you came in” email.
 
Essentially, I was “in between exhales.” A phrase that I feel sums up much of cancer survivorship.

And just about five minutes ago, I received notification of an electronic message. The notification actually felt like the precursor to good news because I know he would have called if something had been amiss.

“Your recent endometrial biopsy on 2/12/2019 did not reveal any worrisome abnormality.”

And, despite the fact weird things are going on, I’ve now had a full body exhale. 

Because, whatever it is, it’s not cancer.




*And sometimes I don't decide to address and issue so quickly. Denial and avoidance are totally solid coping mechanisms in my opinion.







Wednesday, February 13, 2019

Ruminations: Sitting Alone in a Paper Sheet



I found myself all alone in a paper sheet yesterday.

Yep, no hospital gown, just a blue "paper" sheet in the exam room.

Longer story that may come out in the end but right now, while it’s fresh, I wanted to give some very specific feedback to health systems in general based on my experience.

A few days ago, I sent my gynecologist a note via my health portal. Something was amiss and I knew I should make an appointment. I didn’t want my 15 minutes of appointment fame to be filled with initial explanations and level two questions so I emailed the nitty gritty plus a few potentially relevant (or potentially extraneous) details to my doc. And, despite the fact he has full access to my medical record, I reminded him of my health history.

His response was rapid, his recommendation was for a biopsy.

My fears aside, I was glad that we had established everything we could via email, in advance of my appointment so the office/procedure time could be as effective and efficient as possible.

I checked in 19 minutes prior to my scheduled appointment time, filled out the requisite health history form (on paper) and was called back within 6 minutes.

The MA introduced herself, asked me about my day, and took my vitals after confirming my name and birthdate. She showed me back to an exam room (lucky number 16!) and asked me the reason for my visit. Part of me was glad she was verifying but part of me wished she would have just confirmed the reason for my visit based on what was in my record. I mentioned I hadn’t had time to give a urine sample and she verbally directed me to the restroom. I asked what the urine sample was for and she said, “pregnancy test.” I explained that I was definitely NOT pregnant and she said, “It’s just protocol before a biopsy.” 
I peed in the cup and considered the fact that it cost me $10 (lab fee) to prove that I was not pregnant and who knows what it cost the institution in materials.

Two minutes later, she had given me the instructions to undress from the waist down and given me a blue paper sheet to cover up with. On her way out, she mentioned that Dr. C was, “running a bit late, so it might be a few minutes.” The door closed behind her at 2:25pm.

I sat half naked in the absolutely soulless exam room for 21 minutes.

I was nervous. When I’m nervous I get cold. I looked around the office, but no blankets were readily available. I considered asking for a blanket, but I was wearing a blue paper sheet.

I remained nervous. When I’m nervous I have to pee. I considered going to the restroom about 30 feet away, but I was wearing a blue paper sheet.

I could hear discussion in the next room (yep… totally!) and the individual was being referred to oncology. My heart ached for her and my nerves ramped up one more level.

When Dr. C came in, he greeted me warmly and we chatted for a bit. He expressed his surprise at the concise set of symptoms and health history I had sent him the day before, and I mentioned that I wanted our visit to be as effective and efficient as possible.

Dr. C thoroughly explained the endometrial biopsy procedure to me, even though I’d had one before, and asked if I had any questions. He called the MA back in the room and all the “fun” stuff began.

The procedure is what the procedure is, but I was appreciative for his gentle demeanor and he took my lead by talking as a good distraction from my discomfort. Just before we began, the MA suggested I use the heating pack proactively during the procedure and helped situate me.

After the biopsy, I remained in the blue paper sheet while Dr. C explained what we were looking for, and what my options were, depending on what we found. He said, “Results will take a week. Well, I SAY a week, but we will likely have them sooner. I just want to set expectations appropriately.”

All of my questions were answered, and I left the office.

While there exists another blog post talking about the emotional and psychological aspects of everything involved in this visit and now waiting for results, I actually thought I’d use this experience to give a bit of a report card for my visit.




THE GOOD:
  • Rapid and detailed response to my initial email helped ensure the appointment was directed in the right way (biopsy as opposed to conversation that necessitated an additional appointment).
  • I was taken to an exam room within 5 minutes of my appointment time. Especially in cold and flu season, I appreciated being in my own space.
  • Disposition and demeanor of my gynecologist: eye contact, thorough explanation of procedure; thoughtful responses to my questions
  • MAs suggestion to proactively use the heating pack and her help with getting it situated made me feel cared for.


THE LESS GOOD:
  • 21 minutes of half-naked solitude
  • Financial and material waste of a pregnancy test
  • Ability to overhear parts of the conversation in the next exam room
  • Paper health history forms (especially since I've been seen there for the last eight years)


WAYS TO IMPROVE:
  • Warm blankets! For me, a warm blanket is a physical and emotional salve. 
  • Provide more specific “running late” information
  • Decorations (or just some wall colors!) in the exam room
  • Music in the exam room (for my wait and for the procedure)
  • A more thoughtful protocol around pregnancy testing
  • Health history update form sent electronically prior to my appointment




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.