Sunday, February 13, 2022

Relevancy, Muddling & Sleep Deprivation


Honestly had to look back to figure out the last time I posted a blog and to remember what the topic was – the pandemic has created a bizarre timeline of history in my mind. Basically, when it comes to history, it was either ‘before the pandemic’ or it was ‘last week’. There really is no in between.

As it turns out, it has been 18 months since I typed out my thoughts, feelings, and bizarre ruminations and shared them with the world. And, eighteen months ago, I was evidently struggling with relevancy. While sometimes I can’t remember what I had for breakfast, I don’t need to re-read any of my words to remember that struggle. Just the word ‘relevancy’ brings it all back. Or rather re-surfaces many of those emotions along with many of those rhetorical questions.

If I were to depend solely on the words in my post to remind me of those feelings, I would think my existential questions and struggles revolved solely around my place in the world as an advocate.

But to trust those words alone would be to lean into a half truth.

I am struggling through just about every aspect of life.

Struggling through advocacy, parenthood, marriage, friendships, career, and generally just my place in the universe. I can’t remember if I struggled pre-pandemic, in fact, somedays, I feel as if those days prior to March 2020 are forever locked in a box right next to the box that holds all my ‘before cancer’ days.

Candidly, these days it feels like a crapshoot on what I should be fretting about and trying to fix.

So somedays I just cry.

I’d love to say that I cry, look up at the sky (or now out at the ocean), find my inner She-Ra and persevere, like I so boldly stated 18 months ago but, lots of times, I just cry, get frustrated with myself, and then cry some more. Am I depressed? Hell yes. Am I anxious? Hell yes. Do I feel alone? Sometimes.

Am I paralyzed with fear about tomorrow and wanting to end it all? Actually, no. Not even close.

COVID-19 took away my coping mechanisms. The pandemic has taken away the gym, conference hug fests, concerts, and leisure travel. Reactions to COVID-19 measures have created a wedge between me and some people that I love. I’d really like to blame all my tears, and everything I see wrong in the world, on the pandemic, in the same way I used to blame everything on Tamoxifen.

But it’s not just COVID-19.

It’s racism, it’s poverty, it’s climate change, it’s inequity, it’s suffering.

And it’s a societal norm that seems to pale in comparison to the issues above but feels like a gut-punch on the daily.

Societal norms say that in my 40s I am supposed to be smart, sassy, confident, ridiculously self-assured, and basically just nestle into my womanly bad-assery. But I’m not feeling like a bad-ass. I’m feeling like a new empty-nester, recent coastal transplant, and older graduate student who is struggling through the pandemic and yet another effed up reality known as perimenopause.



Pregnancy hormones were rough on me, and Tamoxifen was its own clusterf*ck but this perimenopause thing is simply a whole ‘nother level up of effed up chemical confusion. And… NO ONE TALKS ABOUT IT. Like no one. Well, some of my girlfriends do when we’re hanging out together but… that’s right… minimal hanging out in the past two years.

Instead, I’m reading about how my late 40s are supposed to be filled with crazy confidence across all realms of life from bedroom to the board room while I’m actually sitting on Zoom calls and crying midday because who knows why.

The tears are likely due in part to sleep deprivation. I haven’t had a full night’s sleep in over a week. And we are not talking about five hours versus eight hours of sleep. We are talking about waking every 80 – 100 minutes like “I’m on fire” and flip flopping around in bed for an hour before maybe getting another 80-100 minutes and starting the cycle again. I’ve switched rooms, leveraged the couch, tried melatonin and herbal tea. Nothing is working. The whole rigmarole feels a lot like the newborn breastfeeding night sweat era, but I don’t have the benefit of an oxytocin-high and baby snuggling to counteract my dead ass tired.

So… there you have it.

Still struggling 18 months later.

On my good days, it feels more like muddling and, for that, I am grateful.

I’ve no asks and I certainly have no answers. Just putting out a bit of reality to get it off my own chest. So thank you.

Thank you to the women who have commiserated with me and who have offered me helpful hints on ‘getting through the change’. Like a gazbillion other women who have had a hormone positive cancer, hormone replacement therapy (HRT) is not an option. I’ll stick with diet, exercise, and routine with the hope that eventually sleep will happen. If not, I’m totally going to dose myself with Tylenol PM and hope for six straight hours.

When I’m feeling generally good (which is NOT today) I remind myself that getting old is the gift that I hoped for after my diagnosis but, most days, I just lob questions to people who’ve been down this road before, shed some tears, and b*tch and complain about things. If I’ve learned anything in my life it is that you cannot use logic to address an emotional issue. Well, you can but you do so at your own peril.

Today, I’m imbibing no logic, just making myself feel relevant by hanging all my reality on the outside because I know, I am absolutely positive, that there is some other woman out there, feeling alone, a little sad and a lot frustrated in her perimenopausal, pandemic-complicated life.

Thursday, October 22, 2020



Today I’m struggling with relevancy. The relevancy of what I do as well as the relevancy of who I am.

Beyond the emotional and logistical rollercoaster that is launching children in the middle of a global pandemic with missed milestones and unmet expectations; and beyond the likely normal “who am I after nearly two decades of mothering two humans that are now outgrowing me?” the struggle around what I do for a living has me flailing a little. A lot.

I am an advocate. A patient advocate. A community advocate. A research advocate. A policy advocate. Sometimes I’m an independent advocate; sometimes I’m attached to a non-profit organization; sometimes I’m employed by a company that I feel shares the ethos of truly making a difference, not just making a dollar.

Sometimes I have a fancy title; sometimes I’m just ‘patient advocate’. Sometimes I get paid for the value I bring; sometimes it’s a volunteer effort. Regardless, I’m always me and bringing my whole self to the table. I try and use my voice to share information that can become knowledge and to build bridges between people, resources and opportunities. And I help others find their voices and build the confidence to use them. I connect people to people because I believe that we can always learn from each other and are fundamentally stronger in every way, shape and form, together.

I am perpetually grateful that my family and my situation affords me the luxury of doing what I love to do and yet…

I am effing struggling.

How am I changing the narrative? I left my career after my diagnosis because there was a gap (an actual abyss!) in cancer care. The world was talking about Personalized Medicine but had forgotten to include the ‘person’ in the conversation. Over 1.5M people were being diagnosed annually with cancer, in the US alone, and we weren’t learning what we could from their experiences because data was being siloed and stories of real people and real experiences were getting lost in the shuffle.

I wanted to change that.

I wanted to make a difference.

And, while I realize making a difference comes in all forms, I don’t feel I’ve changed the narrative. Now we have over 1.7M people being diagnosed annually with a cancer in the US. People are still dying. The disparities in cancer care and outcomes remain stark. People are still calling during that ‘oh shit’ moment after diagnosis; people are still experiencing financial toxicity; people are still suffering through treatments that target cancer but don’t consider the impact to the person’s whole self.

It’s ALL the things.

But mostly it’s the premature death. And mostly it’s the fact that despite the efforts of myself, hundreds of advocates and thousands of scientists, people are still suffering from cancers that we cannot control, never mind prevent.

And, maybe after that, it is the narrative that cancer is something to be ‘beaten’ when, in reality, cancer continues to fester and grow inside most all of the 17M survivors, either literally with metastases and progression or figuratively through the physical and emotional after “effucks” of diagnosis and treatment.

That’s it. That’s the punchline. I am struggling.

I don’t need hugs or love or affirmation. I need to find my place. I need to document my goals and objectives so that when I have these crises of faith in what I’m doing, I can show progress. I’m sure it’s there. I just can’t see it right now.

It may be the pandemic. It may be #Pinktober. It may be what feels like a rash of new diagnoses among my previously non-cancer friends. It may be compounded by kids in a launch phase. It may be the bizarre extended family drama. It may be the even more bizarre support group drama. It may be the beyond the pale bizarre political drama. 

It may just be a really bad day. 

But it’s here. If I’m honest, it’s been here for months and I’m finally remembering (AGAIN) that a bit of putting down my thoughts helps me get it out.

Once it’s out I can name it, look at it and begin to address it.

As I’ve word vomited this post, Lisa B Adams has popped into my head. She was the first individual I knew who was living while dying with metastatic breast cancer. I found her posts a stark picture of the reality I wanted to help change and yet I found her perspective on the world uplifting and comforting.

Today I’ll choose to focus on her words. She shared them frequently and they became a mantra for many of us in the advocacy community:

Not sure of my place in the world today but I do know there is much beauty here. And I will find it. Or create it. And then I will share it. I will persevere. 


Monday, June 1, 2020

When a Hug Just Can't Fix It

I've watched people die before.

I've held their hands, I've said goodbye.

If an end must come, and it must for all of us, then making that end beautiful and peaceful feels the way to go.

And yet I have also railed mightily against death for my friends killed by cancer.
My friends taken before they had the benefit of seeing their kids graduate from high school or in some cases, even kindergarten. And, in many cases, before those amazing humans were able to have kids at all.

But I have never seen a man murdered, until I watched an officer of the law break the law and take the life of George Floyd. In full transparency, I couldn’t watch the entire thing. You can judge me for this but my pleading to the video “get off of him, get off of him” was not helping him or me and I knew how it was going to end.

I've been told before that I can't save the world and I remind myself that focusing my advocacy in the cancer community doesn't mean other issues aren't important to me - it just means I can't do it all effectively.

But right now, I can't NOT advocate my fellow humans.

I fight tooth and nail for personalized treatments, accelerated research and protective policies for individuals with cancer. But all the best treatments in the world mean nothing if you cannot access them. 

And access to the best treatments in the world mean nothing if you are truly afraid of being murdered in broad daylight by an individual who has sworn to protect and to serve. 

And this is about so much more than police brutality. Racism doesn’t exist in a bubble. Our “justice” system also unfairly targets people of color. Our health care system is plagued by implicit bias as well as explicit racism. We have significant wage gaps by race.1

The civil rights movement happened well before I was born but racial inequity persists in every single facet of our society.

I’ll stay “in my lane” for a moment and share that, health disparities are rampant in the cancer community.

Over twenty years after a groundbreaking breast cancer drug was approved, black women with breast cancer are still sometimes not offered the treatment.

In fact, “after adjusting for tumor characteristics, poverty and patients’ other medical problems, black women were 25 percent less likely to get trastuzumab than white women.”2

This is the treatment (also known as Herceptin) that not only changed the game on HER2+ breast cancer but is the documented standard of care. Yet, if you are a black woman, you may receive sub-standard of care.

Not only are black women frequently diagnosed with breast cancer at a more advanced (worse) stage than white women,3 African Americans have the highest mortality rate of any racial and ethnic group for all cancers combined and for most major cancers.4

To spell that out for everyone, being black means you are more likely to die from cancer.

The National Cancer Institute has a plan 5 to address these cancer health disparities but these issues don’t magically pop up when someone is diagnosed with cancer and then go away after treatment.
This is our society. This is what we’ve created.

And it’s not okay.

While studies have not gone so far as to label stress a carcinogen (cancer causing), stress has been implicated in the acceleration of cancer metastases 6 (spread) and in this meta-analysis, work stress was called out as having a role in the increased incidence of cancer.7

What could possibly be more stressful than waking up every day knowing that you, while living in a country that claims, “all men are created equal,” face a persistent threat to your very survival based on the color of your skin?

When the 2016 election didn’t pan out as I’d imagined, and our country elected an individual renowned for misogyny among so many other things I do not support, I told my daughter, “The sun will still rise tomorrow morning.”

And the next morning, I shared this with my community:

So the sun did indeed rise this morning.
K stayed up as the results were finalized. Ri's first question was, "Who won?" Both kids have been actively involved in this election and now have similar concerns about what the next four years might bring.
And while our breakfast conversation addressed concerns and fears, we instead focused on the reality that we, as individuals, have as much influence as we had yesterday. As always, we need to use our influence for good, not evil. And, we need to ensure that in our immediate sadness, frustration and fear we do not turn into individuals who denigrate other individuals. Instead, we need to love more vocally, stand up for what we believe in more overtly, use our voices to reinforce what we feel is right and speak out against what we feel is wrong.
This is how we put one foot in front of the other with respect for ourselves and respect for others.

We now find ourselves in the middle of Santa Clara, under both a Shelter-in-Place order triggered by a microscopic and deadly coronavirus enemy, and under a 7-day curfew that was ultimately triggered by the murder of a human being after years, decades and centuries of inequity in our society.

I have confidence in science that we will be able to address the first threat of COVID19 but the biggest threat to our society and, ultimately our humanity, is the way we treat our fellow humans.

Fundamentally I believe that hugs are magical and are frequently the remedy to what ails us. And, as much as I love a good hug, hugs alone will not fix this. It takes voices and actions. 

I have raised my children not to tolerate the intolerable and the racism in our country is not, and has never been, tolerable. From the education system to the health care system to the very obvious police and justice system – we are NOT a united nation. 

There are over 300 MILLION people in this country. We don’t have to agree on everything and we don’t have to look the same to become united, but we cannot look away and we must speak up. 

Black Lives Matter.

And, if you are going to be an advocate, you may want to consider something else that I've learned in my last seven years as an advocate in the cancer community - advocating is not just about speaking up once or twice. 

True advocacy takes consistency, persistence, an open heart and a thick skin. 


Sunday, January 12, 2020

But it’s a Cat Bite, not Cancer

What started out as a challenging emotional time in our first week of 2020 morphed pretty quickly into a challenging health care time. I’ll preface it all with, I am now fine and, the short story is, I have an infection that I needed some help combating.

If you’re interested in the longer version of the story, complete with healthcare frustrations, wins and ridonkulousness please feel free to read on. But please know, it’s a cat bite, not cancer.

As many of you know, our 12 yo family cat, Polymer Fishbone died on January 4th, right after we returned from a family vacation to Colorado. 

Even that is a much longer story but, when we landed at SJC, a friend picked me up from the airport to take me directly to the vet. My hope was that we were picking up our family cat who had become dehydrated in our absence. Unfortunately, things were much worse than dehydration and the prognosis was grim. Brandon and the kids met me at the vet and we decided to take him home for one more night. He was not very lucid and we placed him in our bed that night where he's slept for the past 12 years.  At 3am he suddenly woke and was highly agitated. He began to move wildly and, as I cradled his head to move him to a more comfortable position, he bit me on my left index finger. 

I didn't think too much of it, rinsed it, wrapped it and went back to caring for the cat. He died in my arms as we entered the vet clinic the next morning.

As you might imagine, our house was, and continues to be, quite sad over this loss. 

Saturday afternoon, my finger started to throb and I took a quick look under the Bandaid. Eww. Worse than I thought. My husband and daughter said, “Hmmm… when are you going to the doctor for that?” I explained that it was fine and I was going to my oncologist on Tuesday for a six month check-in, so she could let me know if I needed to see someone.

On Saturday night, I tried to go to bed early since the evening before had been so fitful, but the pain in my finger was then unbearable. Truly unbearable even when compared to the myriad of other surgeries, procedures and recoveries I have experienced.

I recognized this wasn’t a great sign.

At 11pm, after my husband was in bed, I took myself to the emergency room. To the friends who have heard this part of the story and suggested, “You should have called me,” I offer my sincere thanks. My husband would have taken me too.

I didn’t ask.

In all honesty, I was embarrassed going into the ER for something as simple as a cat bite and knew my family needed some rest.  

As embarrassed as I was going in for “just a cat bite,” I became even more embarrassed when I was triaged, immediately given a room in front of all those sick people and told that I should have come in right away. Since I am allergic to penicillin, I was given two broad spectrum antibiotics Doxycycline and Clindamycin and told to come back to the ER if anything worsened. 

A truly efficient and, dare I say, delightful ER experience which feels like a rarity these days.

I was home before midnight and took my first dose of both medicines.

In the morning, I again happily took my dual meds thinking all would soon be well – my only concern the gut issues that would soon follow a rigorous course of antibiotics.

Sunday was a very slow day and I assumed much of my slowness was due to sadness and lack of sleep but, late Sunday night my hand began to look worse. I combined Advil and Tylenol and tried to make an appointment for Monday morning, wanting to avoid the sicky waiting room of the ER.

When I tried to make an appointment online, I was told the first available was a Wednesday 1/8 morning time. Even after I opted to see “any provider” the first appointment the system offered me was on Wednesday. I assumed it must just be a glitch with the portal, so I chose to call first thing on Monday.

I drove into work and called as soon as the office opened and requested a same day appointment. I was told the earliest I could be seen was Wednesday. After I explained the situation, the scheduler said she’d speak with my primary care physician and call me back. Three hours later, she called me back and let me know I could come in at 2pm to the Internal Medicine Clinic.

Honestly, I’m not sure what I expected but I definitely didn’t expect what went down next. As I explained the happenings of the past three days, the physician looked at me, looked at the wound, called the hand surgeon and said she was giving me “an e-consult to the ER.”

“The ER?!?” I was not a fan.
“You need to have intravenous antibiotics and you have to be in a bed to get them,” she said.
“Can’t I just come back later, when there’s room somewhere?” I pleaded.
“No, this is the way we have to do it. I’m sorry. But you’ll have an e-consult so they’ll be expecting you.”

They were expecting me alright but I was NOT expecting a completely full emergency department. And I was NOT expecting the level of illness I was going to be sitting with while I waited to be triaged.

This was the last full day of my son’s winter break and my daughter was home for a few more days before heading back to college – this was NOT AT ALL the way I wanted to spend my time. I asked whether I could just come back, “when it is less busy.”

The otherwise nice woman laughed, “Unfortunately no, let me get your vitals.”

“I just had my vitals done 50 minutes ago. Can we just use those?” I asked eager to get into the queue at least.

“No, we have to do them again. We have to do everything again. If you had an EKG upstairs, we’d have to do another down here,” she explained.

“That’s ridiculous,” I pause, remembering I needed to make nice with the people who get things done down here. Like prison rules, or so I imagine, but different.

“So, if I can’t leave and come back when you’re ready for me, could you give me an estimate of the wait so I can tell my family? We didn’t expect I’d be staying.”

“Well?” she looked up a bit, squinched her face and said, “people have been waiting for a couple of hours.”

Thinking that most, if not all, of the patients she sees are at least as impatient as I am and likely much sicker, I gave her an empathetic smile and deep sigh, “It must be really hard to work here some days.”

No response.

Temp, blood pressure and check-in complete, I was sent to the big room where 30+ people were sitting/lying in various states of concerned illness. They ALL looked sicker than I felt.

I chose a place in the corner of the room where there were few people and as far away from the individual who sounded like he was simply waiting to be diagnosed with tuberculosis.

I need to pause here to say, as a general public service announcement, “Cover Your Damn Mouth When You Cough” because guess what? There are some grown arse adults, who are most definitely very ill, who do not cover their mouths when they cough.

To pass the time and find validation, I took to Twitter sharing that, after all the talk of how misuse of emergency department resources is a huge issue (i.e. people going to the ER when they should make an appointment with their primary care doc), I had played by the rules and the ED was about to be misused anyway.

After one hour of waiting, and immediately after the newest vomiting patient puked, I began composing a letter to the leadership of the hospital, sharing my frustrations at this operational nightmare.

I sent it off at the two-hour wait mark.

Within 20 minutes, two things happened. I was called into the screening room and I received a message from one of the individuals I’d emailed. She was sorry to hear about my cat; sorry about the health care inefficiencies and that another member of the leadership team was checking with the ED director.

It felt good to be heard. You shouldn’t have to know someone to get quality timely care but, in the end, I’m glad I know some people.

Screening was screening - blood draws mostly since all the details were in the e-consult. The nurse working with me was a visiting nurse and had only been working there one week because the caseload was overwhelming the regular staff. He was going to put my IV in since we knew I was going to receive IV antibiotics but some discussion behind the curtain made it clear I would be sent back out to the waiting room until a room was ready.

Queue my not happy face.

He took culture vials and then I heard another backroom conversation – I was being taken to a room and would not be sent back to the room of unfettered contagion waiting room. I think my email was making the rounds.

I was taken to room 31. It had a door, something I would soon learn is an absolute gift in the ER.

It was 5:35pm. Four hours had passed since I’d entered the hospital parking lot that afternoon.

Right about that time, my husband finally read the text I’d sent hours earlier,

“Went to the doc. They've sent me back to the ER... I hate healthcare ridiculousness like this”
His response, “Oh my! I just saw this. Where are you now?

I don’t know about you, but I can’t just text, “I’m in the ER dammit,” without adding more context so I was getting ready to call him when the doctor came in to explain what would happen in the next several hours. First and foremost, I’d be spending the night – likely in this very room since there was no room at the inn upstairs on the ward. I would be given a couple broad spectrum IV antibiotics, as yet to be determined, since cultures wouldn’t be back for days. And he was going to lance the ‘felon’ in my finger.

Yep, it’s actually called a ‘felon.’
And this was really beginning to feel even more prison like.

I called Brandon as soon as the doc left, “Hey where are you?” he asked innocently.

“I’m in the ER dammit,” I choked out and started to cry.

Whether it was fear or frustration or just finally having someone to lean on that did it, I’ll never know but letting some of that out felt good. We talked briefly, I caught him up and he asked what he could bring me since I was having a sleepover in the sicky house.

I ended our call when the nurse walked in to start my IV. As I’m getting my mainline installed, my daughter, who had been out with a friend all day, texted, “Yall dead?”

I had been texting with my son letting him know I was still at the hospital so he didn’t worry and until I had something concrete to share but I hadn’t talked to my daughter all day. She’d just come home to an empty home

“No one’s dead. I just had a little {healthcare facility} speed bump and Dad's bringing me some food.”

Then the phone rang. I asked the nurse to hold off a sec, picked up my daughter’s call and explained everything quickly. She asked if she could come by and told her to wait 15 minutes or so before heading over because they were going to “lance my felon.” My children (and husband) aren’t nearly as into the surgical/blood/procedure thing as I am.

IV was inserted and the nurse came back in with a bag of antibotics to get the show on the road. I was hopeful I could be out before dawn. But, when she scanned my wristband and the bag, antibiotic #1 was a non-starter – they’d already changed my prescription. One wasted bag of IV antibiotics. 

My husband and son arrived with food at the same time the doc was injecting my finger with some lidocaine in order to go after my finger felon so I suggested they wait in the hall before we started dinner. My daughter arrived shortly after, as I was being bandaged up.

As the bloody detritus of that little procedure was removed from the procedure tray, we converted it to a mini table of sorts. Dinner was served. A few spoonfuls of Tom Yum soup was all I could really handle but oddly had a moment of gratitude having my whole family together despite the circumstances. Neither of my children enjoy, or even can really tolerate, the hospital so it meant a lot that they had come. My son, none worse for the wear, or so it seemed, ate voraciously but my daughter declared “I do not eat in ERs.” Wise young woman.

My 7pm – 7am nurse arrived, introduced himself and brought me my first dose of cefepime. The IV pump was low on batteries, and he couldn’t find another, so we let it free pour. One dose down in ~20 minutes.

When I mentioned the “unbearable” pain I’d experienced Saturday night that drove me to the ER, I hadn’t actually experienced a “felon lancing.” A double shot of lidocaine took some of the edge off as he was digging around and “opening the pocket” but it was short lived. As in, we didn’t make the hour.

My good humor started to wane and Brandon found the nurse.
“I’m pretty uncomfortable,” I explained. Cheerfully he said, “I’ve got morphine, Tylenol and Ibuprofen.”

I said, “I’m pretty uncomfortable, but I don’t think I need morphine.”

He went through the standard rigmarole about “getting on top of the pain” and being wary of “breakthrough pain.” I relented and he said he would be giving me 4mg of morphine via my IV.

“Wait. Wait. WAIT!” I said, “I’ve never had morphine before, can I have a half dose instead?”

A lot of blah, blah, blah as he re-explained getting on top of pain but he agreed to give me 2mg and then I could “have the rest” if that didn’t work.

I hate the sensation of pain meds via IV – it comes on fast and I always feel like my heart is going to stop with the injection. And then it spreads out. Morphine is no different in this way.

Fifteen minutes later I ask for Tylenol. “I’m still uncomfortable,” I explained.

I watch my husband leave the room and explain to the nurse that, in my vocabulary, the word ‘uncomfortable’ means I’m in pain. The nurse walks back in to ask for my pain number 1 – 10.
When I cannot answer right away, my son points to the handy dandy facial expressions on the rubric. “Mom, your face is all scrunched up like that…”

“Okay, I’m a seven,” I say.

“I’ll bring you the other 2mg.”

“But the first two didn’t really fix the pain, they just made me feel drunk,” I said.

“Morphine changes the way your body thinks about pain,” he responded.

To my narco-ed out brain, this statement was pretty profound.

I will not go into detail about the conversations I had with my family on the full 4mg of morphine but they all sure thought it was amusing.

My family left to let me try and get some sleep and I was soon attached to my first dose of Vancomycin, another broad-spectrum antibiotic.

My time recall is likely a little off on this one, blame the morphine.
But I do know that within minutes after the drip started, I shifted in my little gurney bed to take a little snooze but soon realized I was scratching my head and the back of my neck. I remember thinking, “Weird. Did I get lice from the ER?”

It took me a few minutes to register what was going on and to press the call button, “Can I help you?” said the voice in the wall.

“Um… I’m crazy itchy.”

“Someone will be right there.”

My nurse came in immediately, “You’re having a reaction to the Vancomycin,” he said calmly as he stopped the IV drip. “Where do you feel it?”

“Just my head and neck,” I replied, actively scratching.

“I’m going to give you a dose of Benadryl.”

When he walked back in with a syringe, I was surprised and made some dumb comment about everything going through IV in the ER.


My most profound learning? No one needs morphine if they have a dose of IV Benadryl. Lights were going out quickly but I grabbed my phone and texted my husband at 8:42pm:

Allergic reaction tonVancomy in. Hella itchy. Now have benadryl. Feels stronger than moorpjine

Lights OUT.

When I woke a bit later, I got to thinking about my reaction and a conversation I had years ago with a friend being treated for metastatic breast cancer. She found that some of her side effects went away when she was infused at a slower rate.

When my nurse came back I asked if he thought that my reaction was because of the ‘free pour’ and he said he’d talk with the doctor.

At 10:10 we restarted the Vancomycin at a very slow rate, which I shared with  my husband in case things went sideways:  

No issues and I went to sleep.

At 11:30 I was woken up by a sweet young woman, “Ms. Tinianov, I’m here to take you for your cat scan.”

It took me a minute but I responded, “You have the wrong patient.”

If you know me, if you’ve seen me in a healthcare setting, you know that I am an “ask-everything-all-the-questions-and-what’s-our-plan” kind of girl.

We’d had a changing of the rounding doc guard and the new physician had come to introduce herself but there was no mention of a cat scan.

My would-be radiology escort left and could be heard in the hall saying to the charge nurse, “31 says she’s not supposed to have a cat scan.”

The response voice said something about x-ray and the woman returned to my room, “Ms. Tinianov, I’m here to take you for your x-ray.” No mention or explanation of the earlier error, just a let’s-start-fresh kind of attitude.

Again, none of the docs I’d seen upstairs or down had mentioned an x-ray so again I balked.

My nurse came in and asked whether there was an issue and I explained. He looked in my chart and said, “Oh yes, looks like {new doctor} ordered an x-ray.”


When my escort returned, I followed her but, as we wound our way around the department toward radiology, I stopped.

“I still don’t understand. Why am I having an x-ray? Nothing is broken. I had full mobility until the swelling got really bad.”

“So, do you want to talk to the doctor?” she asked perhaps a bit incredulously.

“I do.”

“So do you want me to take you back to your room?”

“Yes please.”

At 1:05am {new doctor} walks in and asks why I don’t want an x-ray.

“I just don’t understand. I’ve seen four docs today and no one mentioned an x-ray,” I explained.

“Well {old doctor} thought you should have one to check and make sure nothing was left in there, like a tooth,” she said boldly.

We could blame it on morphine but that was likely long gone after 6 hours but I instantly didn’t trust this woman. Not as in a fear for my life kind of distrust but, to be clear {old doc} had been incredibly communicative about what was happening, why it was happening and asking if I had any additional questions. He had not ordered an x-ray and not told me. I am sure of this.

I deferred. And if, in a few weeks, a tooth pops out of my finger, well… that’s on me.

More sleep in my tiny sleeping space which, by the way, didn’t have bars. Had I enjoyed morphine, this could have been a problem. Just sayin.

At 3:15am I woke.

My hand hurt but really it was the cacophony in the next room that wrestled me from slumber.

The cast of characters, beyond the ones hacking up lungs, included an very irritated individual who thought they had swallowed fishbone; an individual who kept getting out of bed seemingly just so they could push their call button and have someone help them back in; an individual who had had a severe fall likely due to her continuous state of inebriation.

At 3:40am we started round 2 of cefepime and I took Ibuprofen and Tylenol.  

Not much to report after this, blood work for kidney functions required another stick. I was overtly fascinated that everything in the ER came in its own single use, plastic wrapped package. Sterile, fast and a ton of waste. Not complaining, just observing.

7am brought a new nurse and a new doc and a woman cleaning parts of my teeny room. During her quick sweep, she found the culture vial from the day before – no one had taken it anywhere.

“Please don’t throw that away,” I said. “Can you give it to the nurse, that’s my culture?!?”

No words. 

Everybody was waiting to see what was growing in my wound so we could treat it effectively and it almost ended up in the biohazard bin. Absolutely no words.

I was all out of good humor by this point and just waiting on the hand surgeon from yesterday so asked the new nurse, “What’s the plan and when can I go home?”

When the hand surgeon arrived, she explained that I would need to pack my wound three times a day because we needed it to “keep it open and heal from the inside out.” When I explained I didn’t know how to pack a wound she said, “The nurse will show you.”

If it hadn’t been my body parts that we were talking about, the next conversation that happened outside of my room would have been amusing.

Hand Surgeon to my nurse: “31 needs her finger cleaned out and packed.”

My nurse: “okay.”

My nurse to another nurse: “Can you take 31? She needs her wound cleaned and packed.”

New nurse: “I’ve never done that before. Can you show me?”

My nurse: “It’s easy. Just use the quarter inch packing strip.”

Me (in my head): Oh $hit.

When the new nurse came in and said, “I’m going to pack your wound.” I could not help but respond, “So… we’re going to learn together?”

When we started soaking it, I noticed that the other puncture looked worse and wasn’t draining into the “big pocket” so I asked for her to have the doc look at it. There was much consternation at the nurses station since the hand surgeon had already left. I explained I didn’t care who looked at it but I wanted that second pocket lanced and drained before I went home responsible for keeping a wound open when it was very obviously closed.

Another long story shortened, ER doc #3 was a rockstar. I asked, he delivered.

Efficient, effective and with good humor. He also explained that, after several conversations with infectious disease, we were going to put me on oral Moxifloxacin, a Fluoroquinolone because, with my drug allergies, this looked like the best bet.

I balked, “But I had a reaction to Ciprofloxacin, it’s the same drug class.”

“I know,” he said. “But we believe that it is the best drug for you since you cannot take penicillin drugs. And based on your previous reaction, we think you’ll be okay. If you start to have a reaction, take Benedryl.”

My previous reaction (over 20 years ago) had been soft tissue swelling that affected the palms of my hand, the bottoms of my feet and edema in my knees and elbows. I was not a fan of trying this out but, based on my allergy history and typical pathogens in a cat bite, my choices were to be on this slightly scary oral or to have a PICC line for IV antibiotics at home.

So after the doxycycline, clindamycin and the IV cefepime and vancomycin, I'm now on oral moxifloxacin.

Thankfully, the misplaced and almost trashed culture vial must have ended up at the lab eventually because cultures came back positive for Pasteurella multocida Wednesday morning confirming I am on an antibiotic actually effective against this bacteria. The past five days have been filled mostly with naps and wound cleaning. Shout out to my daughter for being a fabulous discomfort distraction and streaming old episodes of Nailed It and The Voice as a great distraction during the yuckier parts of this week. Sorry that her last week home wasn’t filled with more fun but grateful for the love. 

In short, the new year has not unfolded in any way I would have expected or imagined that I could have enjoyed but I’m on the mend and have learned a lot:

  • I’ve learned that a simple cat bite is no joke.
  • I’ve learned that ED/ER misuse/resource drain is sometimes not at all misuse from the patient side.
  • I’ve learned a new meaning for the word felon and made the appropriate link between prison and the ER.
  • I’ve learned I hate morphine but Benadryl is awesome.
  • I’ve RE-learned that self-advocating is hard, especially at 3am when you’re wearing a hospital gown.
  • I’ve learned that I'm the kind of badass that can pack her own wound without vomiting.
  • I’ve learned that “massage” in the wound care clinic is NOT a comfortable thing. 

And, I've learned that I'm grateful for healthcare, and the people who work in healthcare, regardless of the imperfections

As I’ve told several people, I am winning at life and planning a do over of the first couple weeks of 2020.

SIDE NOTE: I’m the type of person that has to park in the same spot everyday or she forgets where she parks but, I shared my teeny tiny gurney bed with my computer bag and purse (as evidenced in the pic above). At every interesting and semi-conscious moment, I grabbed my phone and typed little notes into a draft email. Part of me wanted to just post that draft email itself since it is VERY clear, and pretty amusing, as to when I was being affected by morphine and Benadryl but there are way too many names and identity reveals so I’m just using that as notes.  That said, here are a couple that I pulled because I thought they were amusing and innocuous:
  • Cat scan for a cat bite? nono bo.
  • {name redacted} best nurs sEVAH
  • Another stick at 4:10am to check kidney functions. Iv only working one way flow.
  • 5:55 97/61 & no fever because tylenol and ibuprofen 
  • 7:15. New doc. Old doc didn't say goodbye.
  • 7:20 cleaned my room and she found culture from yesterday evening 
  • 740 hand doc came by. Soak and pack soak and pack
  • Nurse from the other room " I've never done that before. Can you show me how?"
  • Consult with unfe to us disease

Friday, November 1, 2019

October is Over

October is over.

*long exhale*

October is a hard month filled not only filled with breast cancer reminders and pink ribbons but also with dissonance and discord across the cancer community.

Besides cheap candy, October is filled with grief, frustration, anger and sadness for me. 

While I spend eleven months of every year pushing, pulling, prodding and pleading for acceleration of research and access to quality care for all cancer patients, I always seem to take a step back in October. Never intentionally, it just unfolds that way.

Every August, I create elaborate plans to share personal stories of fellow breast cancer advocates and friends in the breast cancer community. Every September I think through how I might explain the difference between patient, research and policy advocacy to those who otherwise don’t make a distinction. And every October 1st, I find myself overwhelmed by the noise that has become, for many of us #Pinktober.

Calls to “Save the Ta Tas” mixed with “Think Before You Pink” drowned out by the knowledge that, despite every advocate’s best efforts, over 100 people die EVERY DAY from breast cancer. After six years in the community, many of these people are not just statistics, they are my friends.

And then there is the dissonance & discord between the patient/survivor/thriver community which tears me apart every time. People diagnosed with early stage disease, desperately trying to get through their day-to-day treatments and trauma who find themselves verbally facing off with people diagnosed with metastatic disease who are doing the EXACT same thing but with a reality that says they will never, EVER be done with this disease unless they die of something else first. This disconnect is real. And it breaks my heart. 

And so I am quiet. Unnaturally so. For 31 days.

I’ll call out the start of the month; I’ll call out October 13th, the single day “dedicated” to metastatic breast cancer. And then I’ll just put my head down and try to support and amplify the good messaging, the collaborative messaging that is out there.

Oh, I’ll still call people out on the misnomer of “prevention,” but I’m pretty quiet overall. And, for those who know me, that silence is uncharacteristic.

By the time we get to Halloween, I’m emotionally spent having vacillated between anxiety over the discord, guilt for not using my outside voice and pure, unbridled anger at the corporations and institutions that have profited off of a hideous disease under the guise of support.

So today is November. Today is a deep breath. Today is self-absolution for my month of quiet. Today is vocal appreciation for everyone who worked their asses off trying to move the needle last month. 

Today is gratitude for everyone who checked on me and understands, without judgement, my need to take a step back. Today is the day I apologize to those who don’t understand - I'm sorry you feel let down. Today is the day I have (another) ugly cry for all those that we’ve lost and all those we will lose. 

Today is the day I pick myself up from the puddle of grief, dry myself off, and move forward with the urgency and earnestness that our community deserves every single day.

Just a few of those who have inspired, taught, motivated and advocated with me.
Thank you. I love you.

Monday, July 1, 2019

Being Hit by a Car is Weird

Being hit by a car is weird.


A day later, I remember everything, and the following nanoseconds are likely permanently etched in my memory.

We were going west down Homestead. Straight. In our bike lane.

As the eastbound car began to turn into us, I was mostly incredulous. “What’s he doing?” I said with urgency and some irritation.

Brandon, my tandem captain, husband of nearly 20 years and lifetime cyclist, was already on it, waving his left hand and screaming “STOP. STOP. STOOOPPPP” from the front of our tandem bicycle.

As the car kept coming, making his left hand turn directly into us, it became clear that the impact was inevitable. On the back of a tandem, I have no control. No brakes, no steering, no gears. Nothing. I am fully dependent – a place I rarely find myself and even more rarely put myself. 

As the driver kept turning his SUV toward us, everything slowed down. 
Oddly enough, even my heart rate seemed to slow.

A calm came over me. I remember my brain saying, “Okay, Stace. You are about to be hit by a car now,” in much the same way you would prepare a young child for an immunization shot. Quiet. Calm. Simple. Matter of fact. “This is going to happen now so, just know that.”

My ears and brain registered the sound of the crash at exactly the moment my face saw the black hood of the Lexus SUV. The little bits of bird poop. My head was so close to the hood that I expected to hit it, to feel the black shiny metal on my face – to land on it. I knew I would dent it.

Instead my body turned midair and was facing the sky. “So blue,” I thought.

In the midst of my slo-mo, a quick moving object caught my attention – our tandem flying through the air and landing 27 feet away from the point of impact. Everything felt like a slow motion video except the bike flying through the air. I marveled at its speed.

And then the landing. My landing.

Hard. No bounce. And no real skid.

I was suspended in the air and then I was just down.

And I stayed down.

I panicked for a brief moment concerned that the car would keep rolling and smash my head, then I heard Brandon before I saw him. He was yelling at the driver, “STOP. STOPPPPP.” Evidently the driver continued to roll well after impact. 
And then my husband screamed, “Why did you hit us? WHY DID YOU HIT US?” as he ran over to me.

“I’m okay. It’s okay. I’m okay. We’re okay,” I said from my prone position on the ground. Left side. Afraid to move. Thought about my legs, tried to move them. “I can move them. I’m okay. It’s okay,” I said aloud. At that point I think I was talking to myself.

I tried to roll further onto my left side and push myself up. No Bueno.

“You’re okay, I’m okay. It’s okay,” these words were my mantra as I focused on feeling out the parts of my body for injury. “Stay down. Just take a minute,” I thought.

Ironically, as I was prone in the street, Brandon draped over me, the Lexus driver says, “Are you okay?”

I stopped thinking, stopped mumbling and likely made a, “Are you effing serious?” face.

Closed my eyes, released my breath, “Please call 911,” I said.

The driver brought out his phone, as I focused on checking myself for movement, but he took so long, Brandon ended up calling. “It’s okay, I’m okay. It’s okay,” I continued to remind myself.

Then there were the usual suspects: Nice neighbors, Police, Firetrucks, EMTs.

By the time the backboard came out I said, “I think I’m okay. I just hurt.”

Onto the backboard and into the ambulance I went anyway.

I could write an entire separate post about the ER experience – not Kaiser’s best day – but this post is just about the randomness of an unexpected trauma. That slo-mo thing. It was fascinating. In those nanoseconds I was able to say and think in full sentences. 

I was fully engaged – living in that moment, if you will.

Our tandem is totaled but Brandon and I are fine. Both of us. He is bruised and sore but made of incredibly bombproof stock. My pelvic and lower spinal x-rays indicate nothing is fractured. Just some deep bruising and soft tissue damage that will take some time to heal. For those familiar with deep tissue bruising, we are now at the "galaxy stage" – blues and purples on my hips, buttocks and back. In a few days the blues and purples will be joined by yellows and greens. Then they will begin to “drip down my legs.” And, in a few weeks, they will be mostly gone.

But that moment. That moment will never vanish.

Being hit by a car is weird. And I absolutely don’t recommend it.

That said, if it had to happen, I’m grateful that we are both okay and that I have the memory and ability both physical and mental to share the story. 

Add a bit more brightness and this would be the current color of my legs, butt and back.