Healthcare 2022: “Follow the _______”
One of my favorite game shows from childhood, Match Game, has been rebooted in the last few years. Near the end, a contestant tries to guess the most popular answer to a question or phrase. They ask 3 opinions from the celebrity panel for advice, and ultimately present their own best guess; sometimes to applause, sometimes to boos and groans. Often the answer seems so obvious to us watching at home, that we find ourselves yelling at the contestant through our screens, “How did you miss that?”
As an executive turned caregiver turned patient turned executive again, I’ve touched pretty much every point in the healthcare ecosystem in the work I’ve done or the diagnoses I’ve endured. On a global scale, we’ve been on quite a healthcare journey here, and it’s tough to predict where we’re going. We’re all looking for someone or something to lead the way. I’ll offer a few ideas from my own lived experience, and as Gene Rayburn said back in my day, “You may choose one of these, or give us one of your own.”
- Follow the Physician (Inclusive of Clinician)
I’ve followed quite a few physicians; whether it was down the hall for a diagnosis code or documentation to code a visit properly and get them paid, for a signature for drug samples as a pharmaceutical rep, or for advice on how to beat cancer. I’ve had the great fortune to work with some brilliant and compassionate physicians. But one thing we know: they are burned out. We know the costs of physician burnout to the U.S. healthcare industry are $4.6 billion per year, mostly due to turnover and reduced clinical hours. That’s an annual cost of $7,600 per employed physician per year. And we know that the problem of burnout has been here for a while. According to the Medscape National Physician Burnout & Suicide Report 2021, 79% of physicians stated that their burnout had started before the COVID-19 pandemic. That’s only gotten worse now. I’m guessing physicians aren’t looking for any additional responsibility than they already have, not to mention the insidious “alert fatigue” and other digital health boons yet burdens. Let’s give our frontline healthcare workers a collective hug and leave them off the answer board for now while they recover from a job that they didn’t sign on for.
- Follow the Payor
My internship in graduate school for an insurance company wasn’t one of my more favorite stops along my mosaic career. I didn’t feel great about attaching a dollar value to a “covered life” or saying “per member per month” more than my own name. Assessing risk of health status is important, but I believe we still have it all wrong in terms of incentivizing “being healthy” vs. “being sick.” We’re still not seeing the behavior change we need to decrease overall spending. Until I see all employers giving PTO for colonoscopies and mammograms, I will continue think that healthcare benefits are broken. And until I don’t have to fight for equipment and nursing services for my permanently disabled son or scans for cancer patients, I will continue to think that insurance companies are not seeing the bigger picture of the consumer they serve. This answer doesn’t make the board either.
- Follow the Policy
“Big goals require big efforts,” says Abner Mason, founder and CEO of ConsejoSano, meaning if we want to help create a healthier, more equitable world, it’s going to have to come from rules and regulations set forth by lawmakers on a local, state, and national level. As we optimistically look forward to how the recently passed Infrastructure Investment and Jobs Act (IIJA) will improve broadband availability for millions of Americans, we anxiously await permanent rulings on telehealth post-pandemic. I celebrated the impact of advocacy after stumping on Capitol Hill for Fight Colorectal Cancer. We were able to eliminate the Medicare loophole for screening colonoscopies. And we’ve seen the impact of the Final Rule of the Cures Act to give patients and their healthcare providers secure access to health information and greater interoperability. There is power in policy. Therefore, I’m awarding the $2000 answer to policy because I feel it holds the greatest potential for the greatest number of people.
- Follow the Patient (Inclusive of Caregiver)
To those who follow me, you’re expecting this to be my preferred answer, and you’re correct, with certain caveats. When I read a report from StartUp Health showing that the greatest VC investment is in Patient Empowerment Tools but the least is in Education and Content, I know that we are not doing enough to close the health and digital literacy divide. How can we follow the patient when we’re not empowering or engaging us to take an active role in our care (I identify as a patient since I have a chronic health condition)? It’s setting us up for failure. It’s time for patients to take a legitimate seat at the table because as my friend and colleague Gil Bashe routinely says, “It’s their table.” How do we train patients to be “franchise players”, not only for our own health, but also to add value to the business of healthcare (biotech, health systems, pharma, IT) as a whole? Jessica Scott et al collaborated on an excellent guide that when implemented with the help of patient experts should be a gamechanger in the way patients become stakeholders in rightsizing our health future. $3000 answer here.
But what is the $5000 answer? If we can agree that 2020 was the problem, and 2021 was the proclamation of the problem, then sticking with the “P” alliteration, my winner would be “Follow the Process.” In short, we’ve done a lot of talking about what’s wrong – 2022 should be the year we start doing. The process is a collaboration of representatives from each of the four above stakeholder groups on a level playing field with a bonus answer of “Follow the Data” (right, John Nosta!?!). Instead of throwing up our hands and accepting the status quo of “we can’t do that because,” let’s instead ask questions and create paths forward for “now we can!”
“How did you miss that?” (TIC)
Believe, Commit, Achieve
I made a promise: if anything ever happened to two people, I would leave colorectal cancer advocacy for good. Those two people were Jim Huber and Sarah DeBord. Jim was fondly known as my “cancer husband.” From the moment I met Jim, I knew we would be friends forever. He was intelligent, warm, and kind-hearted – a guy whom everyone loved. I became part of Jim’s real family. His wife and I spoke constantly, I loved on his kids, and I even called his Dad, “Dad” because I felt so close to him. Jim and I talked about everything on a very deep level. And as I watched his colorectal cancer progress from Stage III to Stage IV and eventually take him from this life in July 2019, my heart sank into profound sadness.
Sarah and I also bonded instantly. I met her at a colorectal cancer awareness event and she captivated me with her wit, grit, and sarcasm. She was my people. We were both in stage IV active treatment when our paths intersected. I asked her about her disease status & she nonchalantly showed me a scan image of her lungs covered with tiny dots and said, “Well, these are all tumors, but I’m doing fine.” I hid how freaked out I was as I marveled at her courage and resilience. When she asked me if I’d consider coming to work for the non-profit organization where she was employed, I think I was still in so much awe of her that I couldn’t say no, even though I knew zero about the NPO world and had no plans on being employed. From then until her passing in July, 2020, Sarah and I were a force to be reckoned with. She was the tough chick and I was the big softie. Our work and play styles complimented each other perfectly. We would call each other just to talk about our big ideas on how we would change the colorectal cancer advocacy world. She coined us as, “Babes Who Hustle” and boy did we. I still can’t believe she’s gone.
From 2016-2019, these two incredible individuals were the epicenter of my colorectal cancer activism universe. I look back and have zero idea how I did what I did during that time while in treatment and caring for my intellectually and developmentally disabled son. I was on a mission. I spoke, wrote, and volunteered for eight different non-profit organizations in some way, shape, or form. I was the subject of a “viral” media story that inspired me to also launch my own website so people with colorectal cancer could reach out to me for free support. I was driven by a fair amount of “survivor guilt;” why was I thriving while other very good people were not? I knew I had to give back – to show my appreciation to God and the universe for me doing so well. But at the core of all of my efforts were my two inspirations, Jim and Sarah.
Losing Jim was a huge blow. He started a fundraiser called “Save Our Butts” which across two years raised $125,000 for colorectal cancer awareness and screening. All three of us (Jim, Sarah, and I) were affected by early age onset colorectal cancer (i.e. diagnosed under the age of 50), so many of our efforts focused on the skyrocketing trend of younger people being hit with this disease with no explanation. And then as Sarah started to decline, I wrapped myself in a thick blanket of denial that I could lose her. When the sad news eventually came, I was on the phone with someone who knew about my vow. I’m a Virgo. If there’s one thing you should know about Virgos, we keep our word. So, through my tears, in a blaze of keystrokes, I unfollowed anyone and everyone having to do with colorectal cancer – organizations, survivors, patients, caregivers, colleagues, physicians, friends. All gone. I wanted to be as far away as I could be from colorectal cancer. I was filled with anger, as it seemed that my hard work was futile. Why continue? I was done. I officially retired from colorectal cancer.
So amidst the pandemic, from July, 2020 to January, 2021, I was colorectal cancer free on all of my social media feeds. It was a special time for me, as in the midst of it, I celebrated my 50th birthday in September and 5 years of no evidence of disease in October. I really just wanted to get on with my life and put all of the cancer crap (pun intended) in my rear view mirror. I focused on my new advocacy work with HIMSS as a “digital influencer” advocating for innovations in technology to improve healthcare for patients and caregivers.
But in January, I received an email from Erin Peterson, whom I worked with at Colon Cancer Coalition asking if I wanted to be “virtually paired” with a pro golfer in the Cologuard Classic in Tuscon, AZ, February 26th-28th. I ignored it at first, but when she resent it with the words “no effort is required by you” in bold, I thought, well, ok. I don’t golf, but my husband and older son do, and I am a huge fan for 25 years. I have a definite favorite golfer. He is fiercely competitive but doesn’t take himself too seriously. He is gracious, personable, classy, tall, and super cute. Like me, he just turned 50 and has dimples. He is Phil Mickelson.
On February 19th, I had all but forgotten about the Cologuard Classic thing, until I received an email around 8pm that evening saying, You are confirmed to be paired with PGA TOUR Champions professional and World Golf Hall of Famer Phil Mickelson. ARE YOU KIDDING ME? Of everyone I could’ve been paired with, I got Phil. Phil Mickelson would be wearing my name as a colorectal cancer survivor on his hat. What were the chances? And he only committed to the tournament that day. And I had received the second dose of the vaccine 4 days before. These signs all pointed to one thing. My husband urged me: “You gotta go.”
Leaving the complex care of our son in my supportive husband’s hands, with no guarantee of meeting Phil, and on my own dime, I booked a flight & a hotel in Tucson on an adventure of a lifetime. Spoiler alert: I met Phil Mickelson. As everyone told me to stand back from Phil and don’t approach him because he’s a germophobe, he said, “Oh Stacy, I have to give you a hug.” And if that wasn’t enough, I asked him for a second hug. And there were pictures and interviews and major media (like The Golf Channel and The Today Show) and a lot of tears. It was incredible. And intensely emotional. No words can adequately describe it. It was a surreal experience after fighting for my life against all odds to walk down the fairway behind Phil Mickelson. And what is Phil really like? He is gracious, personable, classy, tall, and super cute; exactly the guy you see on TV.
But the best, most rewarding and meaningful part of all of it was the awareness it raised for colorectal cancer. I received emails and messages from people from all over the country telling me that they were battling colorectal cancer and my story gave them hope. Or that they had lost a family member to colorectal cancer and seeing me so happy made them happy. Or that they didn’t know how big of a problem colorectal cancer was, and that they were going to talk to their doctor about getting screened. In a year filled with mostly darkness, my encounter with Phil shined a bright light. It had a huge positive impact where impact was sorely needed. For the third leading cause of cancer and the second leading cause of cancer death, success stories like mine are hard to come by. And they need to be echoed and amplified to inspire those in the fight.
Jim was a huge golfer and Sarah worked for the Colon Cancer Coalition. They both would’ve been over the moon for me, and I know somewhere out there, they are. Neither of them would want me to retire from colorectal cancer advocacy. They would want me to continue to share my story to help others. So, Phil, thanks; you brought me out of retirement, and our story brought a lot of people a lot of much-needed joy. Congratulations on your PGA Championship victory and your history-making milestone as the oldest player to win a major. You have shown us all the power of believe, commit, achieve, my fellow 50 year old!
An essay I wrote for HIMSS applying lessons I learned from mine and Emmett’s health journeys to help navigate a (post) COVID healthcare world.
Being a full-time caregiver in ordinary times is difficult, but caregiving during COVID presented its share of extra challenges.
Lisa Richardson, MD, MPH, Director at the CDC commented “This is a great post for people who just found out they have colorectal Cancer. Thanks Stacy.”
Read my guest blog for Colon Cancer Prevention Project on my top 5 survival strategies, not only for colorectal cancer but for any chronic illness.
A Special Needs Caregiver’s Experience
Whoever is teaching the med students to ask this, stop. Just stop. Wait, no. Don’t stop. It’s a great question. Just not one you want to hear 8,000 times when you’ve had no sleep in three weeks.
Our 15 year old intellectually and developmentally disabled son, Emmett, started running a fever on November 29th, 2020, the Sunday after Thanksgiving. We didn’t think it was COVID related since we have been isolating pretty seriously due to his immunocompromised status (as a result of his rare chromosome disorder) and mine as a stage IV colorectal cancer survivor. Emmett is non-verbal, so figuring out what is causing him pain is a process of elimination, similar to a baby, since that is his cognitive and functional level (6 months). He was burning up. We checked him at 102 degrees, but I believe it was higher. His face was all red, his eyes were bloodshot, he was listless, fatigued, and not breathing regularly. We knew he was in severe pain. Emmett is also non-ambulatory. Even though he is incontinent in a diaper, Emmett can bear weight enough for us to wobble him to the bathroom to practice toileting. He didn’t want to bear weight at all. He screamed and cried in pain. He had no appetite. He had diarrhea Sunday through Wednesday of that week and an off and on fever. Around Thursday, he seemed to return to baseline. He had his energy back and his mood improved. But the next day, Friday the 4th, he started declining again. We thought maybe his GI system flipped the other way with constipation after the intense diarrhea, so we tried our usual tricks for that (constipation is an ongoing issue for Emmett because of his low tone and lack of mobility). No luck. The situation was dire, and I was scared. In the 15 years of caring for Emmett and managing his complex special needs, we had never seen anything like this. We headed to the Children’s Hospital of Pittsburgh emergency room. For us to go to the ER in COVID with mine & Emmett’s health statuses, you know it was bad. That was the last place we wanted to go. But with my history of colorectal cancer, we weren’t taking any chances. I’m going to be honest with you: I thought we were losing him.
Upon initial intake with the triage nurse, it started: “What brings you in today?” So I relayed the above details as she typed away. Then we got into a room. A nurse came over with a computer screen on wheels. Asked us again: “What brings you in today?” I thought to myself, “Ok. Maybe the info didn’t upload yet.” Then we saw a resident. A third inquiry. Then the chief resident. Then the attending. Then a fellow. And someone else in between. All asking the monotonous, “What brings you in today?” It started to feel like we were on a Saturday Night Live skit. My husband, Drew, who is way more patient than me, saw me starting to crack and held me back from saying something regrettable. We were not new to this whole routine because we dealt with it when Emmett was diagnosed with his rare condition 15 years ago. We had to go through this drill with at least 60 different specialists (we stopped counting at 60…) and each of their extended student teams. I said to Drew, “This is where we are 15 years later? No one has learned to talk to each other?” It. Was. Annoying. We were worked up for suspected appendicitis, sent up to the surgery observation floor for a deluxe overnight stay (TIC) with 3 bags of fluids, which did Emmett a world of good, and sent home. I thought we were in the clear. 5 days later he declined again. Low grade fever, crying non stop, obvious pain in abdominal area, a limp, not wanting to bear weight. Being the healthcare ninja I am, I went to “Dr. Google” and found a condition called transient synovitis. So just for kicks, I gave Emmett some ibuprofen to see if it would help, and it did. We are fortunate to be friends with the ER Chief, so I called him, relayed my theory, and he advised us to come back to the ER, to rule out a few possible serious complications. I bargained with him, “I’ll come back on one condition: that you prep your staff with the whole story so I don’t have to repeat it 50 times.” At this point, I’ve had no sleep and a non-stop crying, non-verbal, helpless kid in pain for 3 weeks. So describing me as a bit punchy would be an understatement. And until you’ve given your special needs child an enema on your bathroom floor, you don’t know the true meaning of desperate love.
Back we went to the ER. Back to intake. “What brings you in today?” I glared at Drew who assuaged me; “Be calm.” So now we had a 2-part mini-series that I needed to describe to a whole new rotation. Once we got back to the room, a resident came in and well, you guessed it. I was done. I firmly yet courteously said, “Talk to the charge nurse.” I think I made her cry or something because the next text I got was from my friend, the ER chief, who told me that it was a standard question, and that he had filled in the team. It all went pretty smoothly from there (other than leaving out my medical history as one of the main things that we wanted considered). I even got to kiss and make up with the resident. I explained my side of things as a weary mother, and she attested that she was trained to make her own assessment. Emmett was given a super dose of ibuprofen, his bloodwork was trended (in particular his inflammatory marker which was coming down), worked up with some imaging of his hip, and released.
The whole episode was peculiar, yet diagnostically benign, and we were very fortunate. A follow up with orthopedics showed subluxation in Emmett’s hip consistent with anatomic abnormalities due to his chromosome disorder, but nothing further. You’ll be glad to know that the orthopod didn’t ask us what brought us in today… Probably because we were referred to him by Emmett’s longtime physical medicine doctor. The physiatrist obviously picked up on my exasperated vibe and advised me that he’d bring the orthopod up to speed because as he said, “We make a good team.”
How do we fix this incessant “What brings you in today?” problem while respecting teaching hospital and mid-level practitioner protocols? As patients (and caregivers), we shouldn’t have to go through our whole saga over and over to 10 different people. That’s what notes are for. That’s what EMR’s are for. A continuum of communication goes a long way to preserve the sanity and energy of the toilworn patient.
It’s easy, right?
Fine. It’s a word I’ve come to mostly despise. As in me posting my 30th chemotherapy session on Facebook, and a friend from college commenting, “It will be fine.” I called my best friend sobbing; “Of all of the things that having poison pumped into your veins for the 30th time isn’t, it’s fine.” (By the way, that was 25 chemos ago…)
Or as in a colleague seeing me at the grocery store and asking, “How are you doing?” I replied with my stock response, “I’m hanging in there.” And then she says, “But you had a clear scan, so you’re fine, right?” I couldn’t even deal with that, so I just responded, “I wish it were that easy.”
Or running into a neighbor at breakfast, and her celebrating my recent chemo break, which has been nice. She asked, “So how are you doing?” I said, “I’m using this time to rehabilitate my life from all of the damage from cancer and chemotherapy.” She stared at my blankly, threw her hand at me, laughed, and said, “Well you look great, so I’m sure you’ll be fine.”
I don’t provide these examples to diminish the good intentions of well meaning, caring people. I provide them to illustrate the complexities of cancer and the fear that cancer evokes. To be blunt, people either have you “dying” or “fine.” If people are concerned that you’re dying (a metaphor for existing in a very fragile state) then you get cards, texts, calls gifts, and herculean efforts of support. If you’re “fine” (a metaphor for magically cured), then you’re off their radar – compartmentalized into the “I don’t have to worry about her, so I’m moving on to my next thing – like how to get my kid to soccer practice.”
The good, the bad, and the ugly.
To address the fear part: Cancer IS about the scariest word in the English language. You don’t want it, you don’t want to hear it, and unfortunately a lot of people don’t want to be around it. My heart always goes out to my atheist/agnostic cancer warrior friends who post on social media about their complications, and they get the comment of “Prayers.” Unfortunately, in their world, prayers don’t do much good for them. I’d much rather see a comment of “Meals” or “Laundry” or “Errands,” meaning “I won’t offer you prayers since you don’t acknowledge those, but I WILL offer you meals, laundry, or errands.” It seems like any of those three would go a lot further for those folks. Is it easier to just say “prayers”? And then some folks don’t have to deal with the ugliness of actually being around cancer and witnessing first hand its deleterious effects? Is it plain and simple a cop out? I’ve been blessed and fortunate to have received all of the above, and all have worked wonders for my recovery. I just think that the contribution should suit the one in need. And being a true friend means knowing that person’s belief and value system intimately enough to give them something that would actively promote their healing.
It leads to a larger discussion of dealing with good news vs. bad news. We see on social media that images of puppies, beautiful people, and joy get the most “likes,” while suffering, despair, and despondency get crickets. I’ve seen this first hand on my posts. When things are good, everyone is happy. When things are bad, no one knows what to do and they panic. Panic most always leads to ineffective behavior or even no action whatsoever. When I post bad news, and I get zero response, I feel lonely, unloved, and abandoned. What bridges the gap? Education. I used to get angry and frustrated. Now I use this as an opportunity to educate. Don’t do what’s easy – step up, show up, and do what works.
What you should know…
Let’s go back to cancer. Here are a few basic need-to-knows about cancer: first, it’s NEVER fine. It is insidious, and a cancer diagnosis stays with you for life. Yes, you celebrate milestones of getting past it at its various stages, but the fear of recurrence is always with you; every second of every minute of every day. AND the physical, mental, and emotional effects of pumping actual poison (or radiation or cutting up your organs) into your body to eradicate the cancer NEVER go away. They say 1 year of chemotherapy ages you 10 years. Well, folks, I can personally attest to that factoid.
To review my examples, what should these people have said? About the 30th chemotherapy session: “I know they never get easier. I am thinking of you today.” About the clear scan: “That’s great news! Hope it continues to go well!” About rehabilitating my life: “I can’t even imagine (or if you are a fellow survivor), I understand. Hope every day you feel stronger!”
More people are battling cancer and thankfully more people are surviving cancer than ever before. Cancer totally sucks but coming together to seek a deeper understanding of this disease and how we can best know how to help those in greatest need can surely bring us all “closer to fine.”
The Road Well Traveled
Self-Awareness is an underestimated skill. I know what I’m not, but the journey to figure out what I am has been a rather complex one. As a matter of fact, I’m still not quite sure. But at age 47, I think I’m getting closer.
First, I was a precocious, inquisitive child, who wanted to be the first woman President of the United States. Then I got kind of lost in my 20’s, wanted to host my own talk show, and stayed on track enough to attain two Master’s degrees. Then I discovered I was pretty good at sales. And then I got punched in the face. And then I found out I was pretty good at training. And then I got punched in the face again. And punched yet a third time… And now I’m the star of my own, “where are they now?”
Who is “Stacy”? I love people, I have a few letters after my name, and I can get up after getting knocked down. I don’t think any of this is going to make me rich. I wanted to get rich in my “lost 20’s.” Now I just want to survive, learn how to cook, raise my family, and make a difference.
So what really happened and where am I going with this? In a nutshell, I worked in sales, training, and healthcare. Then my younger son was diagnosed with profound disabilities and special needs to the point that he will never walk or talk and requires total one-on-one care for the rest of his life. Then I was diagnosed with Stage IV colorectal cancer that will entail maintenance treatment for the rest of my life. Then my mom was diagnosed with unexplainable total hearing loss that required a cochlear implant and adaptations to her lifestyle to give her some ability to communicate.
But I Get Up Again!
The end, right? On the contrary, that’s just the beginning! Just to review: gift of gab, lots of smarts, lots of experience, lots of adversity. Do I get bitter and curse out the universe? Do I curl up into the fetal position, grow my hair long, and become a recluse? Well, no. I’m a person who LOVES people – I used to enjoy just talking to them, but now I more enjoy listening to them and helping them. And I’m feisty, which really means that I’m not happy unless I’m pushing the envelope in some fashion. I’m a disruptor. Since the world of cancer and disabilities needs more inclusion and acceptance, I’ve chosen that particular area to focus my still yet undeterred energy.
Introducing https://stacyhurt.net – a way for me to take all of this and help the world, either through advocacy, speaking, or consulting. AND, better yet, a way for my supporters to help the world through showcasing efforts of humanitarianism with the hashtag #DoingAwareness (read more about that here).
A couple of other important things you should know about me are that I’m super positive, super determined, and I love to make people laugh. You’d better believe that those qualities have helped me beat down Stage IV colorectal cancer (when I had tumors in 27 places…), helped me raise Emmett to do more than the doctors ever thought he would, and help my mom not be confined by deafness. Three awful things happened to me without any warning or reason. (Isn’t there some rule of three somewhere?) We’re putting all of that behind us, moving forward, and encouraging others to do the same!
So you see, it’s so much more than a website to me. It’s a lifetime of twists and turns that have defined my mission. Tons of people have stood beside me and cheered for me along my road of fighting cancer. They all said, “you are inspiring more people than you’ll ever know.” This just takes that to a whole new level! So I have YOU to thank for this. YOU are the driving force behind my endeavors! Come celebrate life with me on https://stacyhurt.net, and share it with someone who needs a boost. And THANK YOU for helping me to figure out what I want to be while I’m still growing up!
Accepting Change…It’s Kind of My Mantra
I’ve been out of the actual working world for 2 1/2 years in my bubble of fighting Stage IV colon cancer and raising my special needs/disabled son. Wow-how the communication world has changed! I’ve always been a sort of traditional, slow to change person in the world of technology. As I type this, I’m not afraid to tell you that it is on an almost 7 year old laptop that I’ve brought back from the dead like 3 times, but that I refuse to give up because it’s pink (my formerly favorite color before my new sentimental favorite, blue, for colon cancer awareness). I hang on for dear life with basic Word and Power Point – forget it with Google Docs or Prezi…that’s not happening! Too much going on in my life to learn new technology. So I embrace my “Techno Dinosaur” ways which team nicely with my “Think Extinct” plan and mantra to beat down cancer for good…(see my website; prehistoric times have never been so relevant!)
I spoke at the Early Age Onset – Colorectal Cancer Symposium in New York City last weekend. It was fantastic! I was back in my element – contributing to thought provoking discussions around lowering the screening age and more focused dialogue between provider and patient about diagnosis. Big Stace was BACK! In the groove and using my skills. So that part of it was awesome and comfortable!
What threw me for a loop was that people don’t listen to presentations any more and take notes. Noooooo sir! Those days are long gone! NOW, people are “social media’ing” the whole time – Facebook, Twitter, Instagram, Snapchat, Live Stream…take your pick. Hashtags, photos, posts, etc. At one point, I texted my husband and he texted back “You’re being rude! Listen to the presentation!” And I texted, “NOBODY is listening to the presentation! They are all on their devices DOING; not listening!”
Let me be clear – this is an observation; not a criticism. It is the “new” participation. It’s almost like you are not engaged if you are not on social media. If you’re not promoting your event via social media, you’re not doing your job, so it’s a key pillar of effective marketing. But after seeing this behavior, it really impacted me as a speaker to change how I present. Since people are multi-media’ing the whole time, they only catch snippets of what you present. So you have to find ONE thing/slide/message, and DRILL IT, because trust me, that is the ONLY thing they are going to remember. Back in the old days, that was pretty much the case because of people’s short attention span or lack of focus. NOW that is compounded one thousand fold by the distraction of technology. And this type of short-sightedness really mirrors now how we get our information in general – by scrolling through snippets on our devices. It has become a give it to me now, snippet world, my friends, so you better make it good!
A Snapshot of Social Media
Above in my title, I promised a little tutorial of sorts on social media from a 46 year old, behind the times mom (who just happens to have cancer and a special needs/disabled child). So I’ll make this short and simple, in snippets so you can scroll through it…(I’m catching on)
- Facebook – for the 25+ crowd; to post pictures and commentary, as much or as little as you want
- Snapchat – for the younger crowd; when a picture can get a point across and then be out of sight and mind
- Instagram – combination of pictures and short verbiage
- Twitter – this seems to be the one that best promotes an event or a cause; it’s instantaneous and grabs people’s attention quickly to involve them in a moment
- Live Stream/Podcast – such a great way to improve accessibility to an event or a topic for those who otherwise couldn’t be a part of it due to limitations or disabilities
I was gathered with 3 of my “inner circle” friends in January and we exchanged New Year’s resolutions. One of mine was to “utilize and disseminate purposeful media.” In other words, no random observations on Facebook. But rather I would use social media to educate, inform, and raise awareness. Let’s be honest – opinions are like a******s; everybody has them, so really, no one cares what you think. But when you give people a reason to get involved with something bigger than themselves to make the world a better place, that is empowering and impactful! You have to be about a cause beyond just yourself. What is your higher purpose? What is your mission? What mark will you leave on this world? Yes, raising good and respectful children is certainly part of it, but it’s the setting the example of your own global responsibility first…and then passing on to them. Let’s make social media positive, proactive, and passionate for yourself and for everyone else around you…teach, not taunt…preach, not point…rally, not rant, and most of all make those snippets special! Now excuse me while I check to see if I am trending…
The following conversation has taken place about me: “Did you hear about Stacy Hurt? You know, the one with the special needs child. She has Stage IV colorectal cancer?” (Weepy, defeated face) “Oh my gosh, that’s awful! When did that happen? She was so athletic and healthy! How is she doing?” (Scrunched up, horrified face). “She’s doing pretty well, I guess.” (Insert uncomfortable, uneasy face). And then the follow up questions: “How does she look? Did she lose her hair? Did she lose a lot of weight?” And then the subsequent comments: “That’s just awful. That’s terrible. That sucks. Poor Stacy.” (Both people walk away).
It’s ok. I know it happens. Before I was the one that people were talking about, I spoke this way about people I knew with cancer. You instantly become the hottest gossip in town; the latest person with cancer. And Stage IV…wow…that’s really hot gossip. “Will she pull through? Can she do it? I don’t know! Stay tuned! To be continued!” It’s not meant in a malicious way. It’s just human nature. Why do Us Magazine and People Magazine sell by the truckloads? Because people are curious about people. Their ups, but let’s face it, especially their downs. Why is that? No one wants to see anyone down. Is it because we’re all down and misery loves company? Or do people want to put their troubles into perspective? “Man, my life sucks, but it could be worse. Look at Stacy.” Or do they just thrive on drama?
My whole cancer battle has been chronicled in social media. I’ve noticed that the posts that get the most hits are the ones with pictures of me going to chemo. Why? Because people just want to see how I look. It’s ok…I get it. It used to bother me, but now I just realize that that’s how it goes with cancer. People are scared of cancer and they compartmentalize in into buckets they understand: How does she feel? How does she look? How is she doing? And then they run from it…far, far away.
DO NOT BE SCARED OF CANCER! Cancer should be scared of us! WE are the ones who will defeat it! WE have the tools, the science, the technology, and the faith! Fear takes over when we feel powerless, and in today’s world, we are far from powerless against cancer! Furthermore, some of us who are warriors (not all of us) want to talk about cancer. We WANT you to go deeper than just the surface stuff, into the real everyday stuff. We want you to ask us how we are REALLY feeling. And through a discussion, we can allay your fears. We’re still the same us! Let’s change that whole dialogue above and have a teaching moment here – and please spread the word! I’m not going to use me, because I have an incredible support system and I am enormously blessed with resources. So I am going to use my fictitious friend, “Sally” here to illustrate.
“Did you hear about Sally? She has Stage (insert) (insert) cancer.” (Strong, angry, ticked off face). “Oh my gosh, that’s awful! (Thinking, processing face) So I assume you know Sally personally or have a way to contact her. What would be the best way I could help her? Does she need a meal? May I visit her? May I send her a card?” (Empowered face). (Both people brainstorm together about what they can do to help Sally). Did you see worry or doubt or dismay in this dialogue? No. Because you are taking control of the situation. (Oh by the way, you can also insert all of the normal, human nature questions here too – you’re allowed to now).
See the difference? People are going to talk about you…that’s a given. And you can talk about my cancer situation all you want, as long as you DO SOMETHING! You do not have license to gossip about Sally, unless you help Sally; then and only then are you are a part of the solution, not the problem. As long as you are talking about something bad, you are giving it space and energy to grow and pervade. But the minute that you turn the tables on it, face it down, and steal its momentum, you are stopping the negativity in its tracks and making it better. And you do that at the very ground level.
Cancer is no different. Everyone talks about, “Why can’t they find a cure for cancer??” That cure begins with YOU! Instead of just talking about a person with cancer, HELP a person with cancer, and immediately you are part of their recovery. Again, everyone walks around saying, “Wow, I hope Sally can beat cancer”, but what did you do for Sally, other than just talk about her? Talking about her isn’t going to do her any good. Reaching out to Sally in some way (if/when she is accepting) will do her a WORLD of good and CRUSH those nasty cancer cells! Reaching out will also break down the fear, on both sides – your fear of cancer, and Sally’s fear that you have abandoned her because she is now battling this awful enemy.
We’ve all heard the saying, “Talk is cheap.” But guess what…so are greeting cards these days! As a matter of fact, if you price out your time checking all of that social media propaganda, it would’ve been cheaper to buy Sally a card, send her a text, or drive through and grab her a Starbucks. (ok, maybe not the Starbucks itself…) Remember, the END of cancer BEGINS with fearlessly taking action against it with someone you care about today.
Before I fell ill, I had a pretty large career. As you may know, I have two Master’s degrees and was fortunate enough to have a great run in pharmaceutical sales before retiring for a few years to set up care, nursing, and therapies for Emmett while seeing Griffin off to Kindergarten. As a pharmaceutical rep, I made a ton of money, had great benefits, won several awards, and proved to the world and myself that I could sell ice to eskimos. Then an amazing job fell into my lap (thanks to my neighbor) to head up Training and Development for a compound pharmacy based in Alabama. I was recommended for the position by a few of my former colleagues who respected me and trusted my decision making abilities. I have to admit, it was quite flattering. So just to review – Money; check! Power; check! Confidence in one’s abilities-check!
I don’t know if any of you are old like me and used to watch VH1’s “Behind the Music.” Every episode was the same. The announcer would chronicle a band’s rise to fame and glory, and ultimately, the band would get into some drug and/or money problems and hit rock bottom. The announcer had the same line every time: “So and so were on top of the world, and then…tragedy struck.” They would cut to a commercial and he would say, “When we return, the road back…” Well, insert here that same “Behind the Music” scenario. “All was going pretty well for Stacy, and then…tragedy struck. When we return, the road back…”
You are all well versed on the tragedy part. For all intents and purposes, let’s assume that I am on the “road back.” I had to give up that fantabulous job at the compound pharmacy for several reasons. One, I had to travel to Alabama once a month, which obviously I can’t do due to risk of infection, fatigue, and my rigorous treatment schedule. Two, it involved a lot of typing which I can’t do because of the permanent chemo-induced neuropathy in my fingers and hands. And three, I just can’t be held accountable for any projects because I don’t know how I’ll be feeling mentally, physically, or emotionally on any given day.
So here I am: smart, witty, and competent with tons of skills, relegated to collecting disability (thank you American taxpayers). Fortunately, my husband has an excellent job, and we’ve saved some money for a rainy day (by the way, it’s pouring) over the years to the point where they won’t shut the lights off in my home if I don’t work. I’m not saying that I am walking around in a fur coat, driving a Ferrari, and eating caviar. There are tons of out of pocket costs both for Emmett and me that insurance doesn’t cover. We just live within our means and try to make ends meet like everyone else. My heart aches for my fellow warriors who are in my same situation but are the breadwinners or single parent/provider of their households. The medical bills from cancer or any chronic disability are staggering.
I have this “need/want” to earn money. I guess it goes back to my blue collar, Polish roots where if you’re not making money, you’re not contributing. You know, like, “what are you bringing to the table?” And I guess money is the commodity on which I’ve always based my self worth. This is pressure I put solely on myself. My wonderful husband doesn’t want me to work. He wants me to get better, be happy, and nurture a loving home for our family. My mom told me that I “need to be more of a mother” which I’m pretty sure doesn’t translate that way, but more to what my husband said above. The problem is that I really don’t cook, I don’t bake, I don’t sew, I don’t iron, I don’t garden…well, you get the picture. My resume for “homemaker” reflects that I am unqualified for the job. I’m a pretty good cleaner/organizer, and that certainly makes up for a lot of other shortcomings.
I believe that life unfolds in phases. Remember, the “money-check, power-check, confidence in one’s abilities-check” part? What more could one ask for in a successful career? I am coming to terms with the fact that that phase of my life has passed. Been there, done that. I am in the “give back, pay it forward” phase of my life. I often say that all of these challenging personal trials happened to me for a reason. They did. For me to show others how to cope with such matters. Those who can, do. Those who can’t, teach. There is no “pay”- there is passion, purpose, and pride, which in my eyes can certainly qualify as enough “pay” to fill my heart with more meaning and riches than ever imaginable. My “work” is lighting the way for fellow warriors and being a voice for those who won’t or can’t speak for themselves. I am humbly honored to accept this mission. And since all of you are my “boss,” make sure you give me a performance appraisal. I appreciate the feedback and promise to always strive to do better!
When I worked for Merck, their motto was, “Do what you love and the profits will follow.” I remember answering the question, “What do you want to be when you grow up?” with, “I have no idea; I just know I want to work with people.” I am 46, still growing up, not knowing what I want to do. But I am working with people, whom I love, and every single day I am alive, the profits follow. Thank you for reading this and have a fulfilling day!
Author’s Note: Happy 13th Birthday to my son, Griffin, who is one of the 3 miracles in my life. I love you Griffin, and I am so proud of the man you are growing into with your compassion for the world.
Hi everyone & thanks for reading! As you all probably know by now, I am a “God” person. It’s my belief. I would never want to impose my faith views on anyone else. With that being said, I have a lot of friends who are “non-God” people, and I have the utmost respect for them. Some people send me prayers, some people send me positive energy. Some people send me flowers to convey their thoughts, some people send me food. Hey, I will take it ALL without judgement! You may have heard me say: “I’m like Sandals; I’m all-inclusive!” I mean it. So just to warn you, this is a God post. My higher voice is God. Like my one friend, yours may be Gucci. Yours may be your significant other, or Buddha, or a sunflower. Whatever higher voice speaks to you, listen to it and trust it.
For some reason, my older son Griffin’s room is special. I have made life changing decisions in there and also had some not so good intuitions. It was in Griffin’s room when I was pregnant with Emmett that I said to my mom, “Something is not right with this pregnancy. I feel it.” I had no inkling to sat that except from a higher voice, because I had a better pregnancy with Emmett than with Griffin. You can call it a gut instinct. I call it God. Anyhow, one month after my diagnosis, I was making Griffin’s bed. I started thinking to myself how much I wanted to beat cancer to live to see my boys grow up; to see what each of them would do/be/accomplish in their lives. To see how Emmett would prove the doctors wrong by walking and talking; to witness what medical breakthrough would enrich his existence. I was still actively working full-time as the head of Training and Development of a pharmaceutical company. I just kept asking, “What can I do to beat this? What do I have to do to beat this?” Suddenly, I just plopped down on the edge of his bed, as if someone sat me down and said, “I’ll make you a deal. I’ll get you through this if you devote the rest of your life to helping others with this disease and with whatever life demolishing situation they have to encounter.” Nobody said that out loud, but I said out loud, “It’s a deal.” And then all of these thoughts flashed through my head of always making everyone laugh, of always being the life of the party, of always speaking up, speaking out, and asking the questions that everyone wanted to know the answer to but was afraid to ask. From the time I was 6, I was made for talking. Time to put it to use for the greater good. THIS was why it all happened to me – Emmett, me…it all made sense now. Time for a career change. Bad Stuff + My Big Mouth = LIFE for me and a lot of others! (so far, it’s a plan of purpose and passion, not pay- LOL…)
So you wonder: why did she put it all out there on Facebook? Why does she do all of this speaking? NOW YOU KNOW!!! (See, reading Stacy’s blog DOES have its plusses….you get the inside story!)
Hokey, right? God speaking to me? It gets worse. I love Fleetwood Mac – from the time that my mom bought Rumours when I was 7, that was it. I would play that album and dance around my basement like I was Stevie Nicks. I fell in love with her. Her voice, her style, her lyrics, her attitude. When the song “Gypsy” was released, I would tell my mom how much I adored it, and she’d say, “That’s because you’re a gypsy! Never sitting still! Always looking for your next adventure!” I used to always dress up as a gypsy for Halloween and I got a kick out of fortune telling. Whenever I need to calm my nerves and recenter myself, I play that song. On my first trip to Hillman when I was sitting in Dr. Bahary’s office scared to death (literally), I asked Drew to play Gypsy for me. To this day, every time I get chemo and they start my IV, I play Gypsy. Every scan I have, I play Gypsy. So it’s no surprise that when Fleetwood Mac played in Pittsburgh one month after my diagnosis, after I’d made my “deal”, and they played the song “Gypsy”, I cried. They were tears of a million different emotions. And Griffin was there with Drew and me. God’s voice spoke again to me during that song and said, “Remember our deal. Trust in it. Do it. Trust Me.”
So whatever drives you, whatever motivates you, whatever higher voice speaks to you; listen to it, trust it, do it.
To the gypsy that remains; She faces freedom; With a little fear;
I have no fear; I have only love; And if I was a child; And the child was enough;
Enough for me to love; Enough to love – Gypsy, Fleetwood Mac
For Stacy, it always gets back to love! Take care & stay strong!
Anyone who knows me will say beyond a shadow of a doubt, I am a control freak. When I am working with a contractor on a home project or talking to my sons’ teachers at school, I always caution them; “I am a Type A+++. Total control freak.” At least I admit it… A planner, a list maker, a rule follower, a true Virgo in every sense of the word…whatever you want to call it, I am in control at all times. I give excellent advice, and I expect everyone to follow it to the letter. Anything less is unacceptable. Except for my Penn State college years (which stretched waaay too far into my 20’s & early 30’s before kids) that were spent much of the time in a drunken haze, I’ve been in control. And even then, I CHOSE to be out of control. I controlled my out of controlness…
So you can imagine how I felt when Emmett was diagnosed. My first question was, “What did I do wrong that my child would have to suffer like this?” Was it something I ate? Drank? Was exposed to? The doctors had the same response: It was nothing you did, it just happened. Bad genes. REALLY hard to accept even to this day, 10 years later. I watch pregnant women smoking, drinking, eating junk food but yet having completely healthy kids. I did everything right, took all of my vitamins, exercised, and yet my child was born with a totally debilitating chromosome disorder. I was 35 years old. I didn’t get it at all. Everything I did to control the situation didn’t matter. It is what it is.
A person should only have to go through that type of inexplicable agony once in a lifetime. Well, put your seatbelt on and hang onto your hat… spoiler alert: it happened again. When I woke up from my colonoscopy on September 11th, 2014 and the GI doc said the words that a person NEVER wants to hear: “It is most likely cancer.” Of course this control freak’s response was, “Cancer? You’re telling me I have cancer? How could that be? I do everything right.” I always ate pretty healthy and lived an active lifestyle since I am a lifelong athlete. But my husband and I even cranked if up a notch in the 8 years since Emmett’s diagnosis. Our goal was to be as fit and strong as we could be to raise our 2 boys – namely Emmett, since he needs 24 hour care. Wait for it…the doctors had the same response again: It was nothing you did, it just happened. Bad genes. They even added in a new one for an extra added bonus: Bad luck. Thanks guys. I appreciate it. No risk factors, no family history, signs and symptoms that my PCP thought were IBS or internal hemorrhoids revealed thee worst possible scenario and most unexpected diagnosis: Stage IV colorectal cancer.
Why? Why did all of this occur? ESPECIALLY since I did all of these wonderful things to try and live a good, clean life. I am a person of great faith (a God person), so I did a lot of soul searching. What did I do wrong in my life to deserve all of this? I really always thought of myself as a pretty decent person. I helped old ladies cross the street. I held doors open for people. I (more or less) spoke kindly of everyone and didn’t make fun of anyone, even when other kids kid. People asked me, “Are you mad at God?” I would always say, “No. I am mad at myself for whatever I did wrong.” But what was bothering this control freak was that I couldn’t figure out exactly what it was that I DID wrong – and that is baffling. And what’s worse is that my illness that I apparently had nothing to do with not only affects me, but my parents, my husband, my other son, my friends, my employer, the rest of my family, etc. All of these other people are burdened. THAT’S the real bummer and guilt trip for me; that my illness drags down so many other folks, and that I can’t fully care for my sweet, beautiful angelic son, who needs his mother more than anything.
It’s really a sick, cruel joke. I picture something that looks like Jabba the Hutt in the shape of a big cancer tumor just shaking its belly and laughing at me, like “Ha ha, Stacy. Your life SUCKS. I took it all away from you. Your healthy life. Your healthy child. Everything sucks. Sit around and cry! Fold! Give up!”
But alas, friends – the answer is NO!!! This is when our hero rises like a phoenix! In addition to being a control freak, I am also the most determined person I know. I love a challenge. And I’ll never forget what my 2 time cancer-surviving friend and mentor told me when I was diagnosed, “This is where the stubborn Pollock kicks in!” (she is also 100% Polish and today is her birthday! Cheers!) I will NOT BE DEFEATED!
I have a lot of people now reaching out to me who are battling cancer. I am blessed and lucky to be doing really well (currently no evidence of disease). They all ask me, “What did you do to be winning right now? I want to do what you did. Give me your playbook.” And this is what I tell them, “Control the things that you can control: diet, exercise, stress level, attitude. Beyond that, trust your gut instinct, your doctors, and God (or the universe for my non-God friends).” Swapping control for trust has been my biggest turning point.
Am I still a control freak? Yes. Do I control everything like I once thought? No. Do I still question the whole thing? Yes. But am I ok with answers like, “It just happened?” Weeeelll….yes and no. I’d say I am doing a lot better than I was 10 years ago. The fact is that life in general “just happens.” The good, the bad, and the ugly. But live in the moment when it happens and control HOW YOU REACT TO IT. That’s the difference.