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.

Dude.

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.”

“Okay”

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.

Surreal.

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. 





Thursday, May 16, 2019

Navigating Hope Drive


“In 1.6 miles, take a right on Hope Drive,” my navigation system instructed.

“Eff. You. We’ve been on that road before, Google. We have been on that #$&%^* road before,” I replied aloud.



Google maps was giving me literal directions but, at that moment, the irony was overwhelming.
I made a right onto Hope Drive, parked my car on the street and walked another block to visit my dying friend.

Occasionally I will run across feel good stories about cancer being a gift in someone’s life. But cancer is no gift. Cancer is a thief. Cancer stole my breasts, my peace of mind, my sense of security that leading a ‘healthy lifestyle’ would ensure a long life and cancer stole so much of my children’s childhood innocence.

And cancer stealing my friends. One by one. Month by month and sometimes week by week.

More devastating is how it steals them piece by piece, bit by bit.

Our visit was brief. Her husband explained the night before had been a rough one and her dosages of pain meds and sedatives had been upped. She didn’t recognize me. I told her I loved her. I smiled at her. I asked if I could give her a gentle hug and she agreed.  

I distributed my hugs to the whole family and left with a smile of my face and gratitude in my heart for the gift of being able to say goodbye.

And I left absolutely devastated.

I sat in my car for 15 minutes bawling and swearing. H was dying. She wouldn’t make it to Mother’s Day in a month. She wouldn’t even make it to her son’s 9th birthday only 2 ½ weeks away.

All the words that are socially unacceptable to say in public, I yelled in my car. And I let the tears fall.

And then, I made a very conscious decision to get back onto Hope Drive and return to work.

Two days later, I visited again.

This time, H announced, “Stacey!” as I brought flowers from my garden into her room.

Physically she remained ravaged, but the eye twinkle was back. She asked about my children, fully engaged in the conversation, minutes later her eyes were tired and her speech faded. She looked at me in earnest and said, “The thing I don’t like is that you cannot go to the toilet by yourself. You have to poop in a diaper.”

“And, I cannot eat when I want to eat.”

“What do you want to eat?” I asked.

After contemplating for so long that I was convinced she had lost the thread of the conversation and the question, she responded thoughtfully and quietly, “I want to cook.”

A simple ask. A task, in fact, that some of us bristle at – cooking. To many, the daily responsibility of meal making feels like a chore. To a dying woman, cooking would feel like a gift.

H can no longer hear well. She cannot process long sentences. She cannot handle visitors and conversation for long periods of time.

Her belly is bloated and her limbs are wasted.

Her face is skeletal and her eyes are jaundiced.

Cancer stole her mobility, her dignity and her future.

My friend is 38 and she will not make 39.

Cancer will steal my friend.

But I refuse to let cancer steal my hope.

After this second visit, I left H’s house with that familiar dichotomy of emotions that I have only been able to describe as “Grateful and Gutted” – grateful to have had a connection, gutted to bear witness to another friend suffering the indignities and finality of terminal cancer.

I wiped away the tears I’d refused to shed earlier, and typically refuse to shed in public, found my car and, once again, made a conscious effort to continue back on Hope Drive.

One week later, with hope in my heart, I was back on the literal Hope Drive.

This time, I thought with some sense of warmth, it’s not a trick. I’ve had multiple ‘final visits’ with a friend I didn’t think would live to see the end of a week.

One more visit after one more visit.

Her son turned nine. 

On the eve of Mother’s Day, my sense of urgency was triggered. Whether it was time in the garden or the reality of the next day, I texted her husband and asked if I could visit.

When I walked in the room, I knew this was our final visit. Gone was the twinkle. Gone was the recognition. Gone was my friend.

She wasn’t lucid but I spent time telling her that I loved her. That I was proud of her. That I was sure her boys had inherited her strength and perseverance. That she was a good mom and that she was a wonderful friend.

Then I spent an hour downstairs visiting with her husband and his friend. They shared amusing stories from their past. We laughed. H would have been happy about this part.

H died yesterday afternoon. While her body was ravaged, her indomitable spirit managed to ensure she not only made her son’s 9th birthday but she also lived through a final Mother’s Day.

Today, as I drove to work, she was on my mind. I thought about the sheer force of will it must have taken to make it through those key days. And then I thought about hope. It must have taken a fair amount of hope as well.

And, as pulled into the parking lot at work this morning, I was greeted by a rainbow.




“Thank you, H.” I said aloud. “Thank you.”

While I’m giving myself full permission pull off on the side of any road for a good cry, a primal yell and perhaps some inappropriate swearing, by and large I plan to continue to travel along Hope Drive.


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.”