|Just a few of those who have inspired, taught, motivated and advocated with me.|
Thank you. I love you.
Friday, November 1, 2019
October is over.
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.
Monday, July 1, 2019
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.|
Thursday, May 16, 2019
“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 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.”
“My annual. Well, sort of my annual.”
“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
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.
- 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