Creating My Cancer Posse

March 9, 2016February 1, 2017Leave a comment

As featured on curetoday.com

When diagnosed, I ate up books by inspirational survivors who shared their tips and tricks for making it through the cancer maze. One of my favorite cancer surthrivers is Kris Carr, who starred in the documentary “Crazy Sexy Cancer” and went on to write several books on healthy living, such as “Crazy Sexy Cancer Tips.” I flipped it open and agreed with every sentence, up to the part where she suggested I create a “Cancer Posse” consisting of other survivors like myself. Immediately the record player in my head scratched and I said, “No thanks, not for me.”

Before cancer, I considered myself pretty tough. I ran a marathon, placed first in a sprint triathlon and hiked across a country carrying everything on my back. I’ve always enjoyed my solitude and these achievements were completed alone and by choice. So, when several people suggested I join a support group, it sounded like self torture. Plus, my perception of cancer survivors was that they were thin, sad, sick, bald, weak people and I cringed at the thought of sitting in a church basement, in a circle of tears asking, “Why me,” while others rubbed my back. Those are not my people, I thought.

(Keep reading – I’m going to eat my words.)

However, I was thirsty for information and found an online group of other pancreatic neuroendocrine tumor survivors on Inspire.com. Without even realizing, I had joined a support group. After a month of participating in online discussions, the members encouraged me to seek a specialist. Their insistence and physician recommendations resulted in a consultation with one of the top neuroendocrine cancer doctors in the country, who provided me with a good game plan. I thought of support groups as outlets for emotions, but the fact that they could be a place to exchange valuable information had never occurred to me. In my case, I found this online group to be more knowledgeable about my disease than most doctors.

Then a year ago, I got pretty sick from cancer and treatments. My friends and family were desperate to help, but none of them really understood what I was going through. Cancerland had a population of one and left me wishing I would’ve created that cancer posse.

One day, in the midst of my treatment chaos, I posted an update on Facebook and an acquaintance from long ago immediately sent me a message sharing her story and offering support. I knew she had also been through treatment and could relate. From that point on, we exchanged messages and texts checking in on each other. Eventually, she came to town and we met up for two hours and talked non-stop about cancer, commisterating about doctors, wait times, side effects and weird things that happened to our bodies. Wow, did it feel good! I had the first official member of my cancer posse. Since then, this friend moved to my city and I’ve added a couple more members to my crew. I hang out with these friends all the time and we almost never talk about cancer. Not only do they make me feel less self conscious about my unusually short hair and protruding chest port, but it’s comforting to be a phone call away from someone who gets it.

So, I hereby retract my disdain for support groups. These days, they are much more than sitting in a circle and crying. They provide a sense of comradery, make you feel less alone, share helpful information and are full of people who have deep empathy. I realized your posse doesn’t have to be traditional. It just has to be one that works for you.

As for me, I still haven’t joined a live, local support group, but I have my own, unconventional posse consisting of a small, select group of friends and hundreds online in the neuroendocrine cancer community who are always to happy to share their decades of wisdom.

Now, let me publicly apologize to anyone who has ever faced cancer for calling them thin, sad, sick, bald and weak. Before diagnosis, I considered myself very strong, but chemotherapy and cancer brought me cowering to my knees. If I had only known then, what I know now, that cancer fighters are some of the strongest, baddest, toughest people on this planet. I’m humbled and grateful to be among them because they are my people.

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Lessons Learned in Advocating During Your Cancer Treatment

March 2, 2016December 19, 20164 Comments

As featured on curetoday.com

“You have to be your own advocate.”

We’ve all heard it before, but when it comes down to it, being your own advocate means so much more than bringing a notebook to appointments, being knowledgeable about your disease and asking questions. When it comes to cancer, we’re not advocating for a bike lane on main street. We’re advocating for our families, happiness, feeling good and our lives.

I have always had a bold personality with no reservations about being a pain in the behind, so advocating for myself was a natural instinct. While I know there is still a lot to learn, I give partial credit to my advocating abilities for living today with no evidence of disease.

We all have different tactics to insure we’re receiving the best possible care for ourselves or our loved ones. Here are some of the important advocating lessons I’ve learned along the way:

I got many opinions. I know this goes without saying, but the more I talk to other survivors, the less I hear this actually done. If I had stuck with the first and second opinions, I would not be feeling as good as I do today. I figured since I and my insurance company would be paying them a lot of money, it was my right, as a paying customer, to interview doctors as if they were applying for a job. The position was saving me. Not only were their answers to my questions important, but I also considered their experience, personality, accessibility and whether they would be a good fit on Team Stacie. Also, I learned the hard way that liking a doctor, does not mean they’re right for my team. I wanted the best doctor for my disease, not a best friend.

I found a leader. I wanted the very best, which to me meant a doctor who lived and breathed the disease I was facing. Someone who leads clinical trials, knows the cutting edge treatments and can answer my questions without needing to look them up. Eventually, I found a specialist in a neighboring state with over 30 years of experience and patients who credited him as the reason they’re alive today. My doctor only works on neuroendocrine cancer and has not only championed treatments through FDA approvals, but is also up-to-date on the latest promising treatments in other countries. As the captain of Team Stacie, he develops the game plan and works with a local oncologist in my hometown.

I email my doctor. In today’s world, we shouldn’t rely on appointments and phone calls. I find when I call a doctor during the day, they are with patients or unavailable. Therefore, I send a email with a question or request for them to call me along with a list of what I’d like to discuss. If it’s quick and easy, I let them know they can respond via email and a phone call isn’t necessary. My specialist is older and not so email friendly, but his nurse is happy to play the middle man. Beware of a doctor who won’t provide you good access to them.

I’m on my team like white on rice. All healthcare professionals are busy people and I can see how patients slip through the cracks when doctors are working, on average, 60+ hours a week. However, my life depends on not slipping through the cracks, so I am respectfully stuck to my doctors hip like glue. I won’t hesitate to call, leave a voicemail and follow-up with an email, day after day. The result, my doctors know this and are always quick to return my call, if only to get me their off their back. When we do connect, I acknowledge their lack of time and express my sincere gratitude.

I learned my disease inside and out. Thanks to living in the information era, I connected with many patients affected by the same disease who shared their decades of wisdom. However, I do not believe my ability to Google overrides the knowledge in my team of highly trained medical professionals. While going through treatment, I leaned on my team and Google to teach me how to read lab results and reports. Before I am called into an exam room, I’d pull these up on my iPad to discuss with my doctor or nurse. I’ve even been known to impress a couple interns, nurses and assistants with my level of knowledge, which I take as a compliment.

I leaned on my closest allies. There were times when I was so sick, I just wanted to get out of the exam room and into the treatment room. During those days, I leaned on my husband to ask the questions and advocate on my behalf. I also have a friend who has been through her own health challenges and offered to become my legal advocate should the situation arise. Another possible line of defense I considered was a third party, trained health advocate. Before cancer, I wasn’t aware such an occupation existed.

Above all, I trust my gut. I have learned so much since my diagnosis, but one of the most important lessons is to trust my gut. More than ever before, I am in tune to what my instincts and body are saying. In the past, when I rebelled against these internal compasses, I was always sorry. I constantly check-in with how I’m feeling and talk to my body as if it were a separate entity. Deep down, I know what is best for me and it’s my job to communicate with my team.

Advocating for yourself can be exhausting, but your life depends on not letting your guard down for a moment. Be heavily, unstoppably and unapologetically engaged in your health and you could be rewarded with the best gift of all: life.

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Waiting for Hair: The Toll of Chemotherapy and Cancer

February 10, 2016September 27, 20164 Comments

As featured on curetoday.com

My impatient husband is waiting for me to finish doing my hair. We’re meeting friends for dinner and already running late. This used to be a regular scene at my house on any given weekend night.

Now, I’m bald. I think about this as I sit at a coffee shop and look around at all the healthy people flaunting their hair — mocking me with curls, highlights, ponytails, bobby pins and headbands — while they run their fingers through their locks with no thought. I am green with envy and feel guilty for taking my beautiful hair for granted.

Free at last from the heat of a Nashville summer.

I acknowledge hair loss is a difficult and traumatic event for many during cancer treatment. For me, losing my hair wasn’t hard — it was the waiting for it to grow back that has been the most challenging. I finished my last chemotherapy treatment on Christmas Day and was irritated not to wake up December 26 with a full head of hair.

When I started chemotherapy, my doctor gave me three options of cocktails and explained the potential side effects. I asked her which one she thought would be best.

She gave her opinion and followed it up with, “It’ll give you crazy diarrhea and it’s the most toxic but you won’t lose your hair.”

Really? I was shocked my doctor thought I would rather endure weeks of diarrhea just for hair. On my first day of chemo, the pharmacist and I reviewed the side effects again. I decided to go with a less toxic cocktail at the expense of my hair. Up to that point, I only thought “hair” only meant was on my head. It was then that I learned I could lose everything. Yes, everything.

Two weeks after my first treatment, I ran my fingers through my hair and out came a handful. Within the hour, I called some friends to come over to shave my head. We made a celebration out of the event and created many styles. I had a mohawk over salad, a side shave over pizza and a nice patch in the front with a curl over dessert. No tears were shed, but there were a lot of laughs. Eventually, we shaved it down to a nice stubble and it felt great during that Nashville summer.

Even though I bought a wig and countless people sent me scarfs, I decided to be out and proud with my bald head. As if it were any consolation, I have a nicely shaped head without any Gorbachev birthmarks or funky lumps. I often forgot I was bald and people are pretty cool these days about not staring too much. A fellow survivor even bought me lunch once.

Much to my surprise, the stubble stayed and I never got Mr. Clean bald. Angry, I wondered if my shave was premature. Remembering everything, I stopped shaving my legs, until my husband said the hair was braidable. And even more annoying — that one hair growing from my chin. You ladies know what I’m talking about. I welcomed the loss of that little sucker. Nope, it never happened and I’m still plucking that rebel. Eyebrows, eyelashes and everything else remained in tact.

Halfway through my six rounds of chemotherapy, I got a two month break from chemotherapy for surgery. I was ecstatic when my hair started to grow back and continued to do so even after I resumed treatment. I thought that maybe I wouldn’t lose my hair this time. Sure enough, the day after the thought existed in my brain, I woke up to a softball-sized bald spot on the back of my head. I resolved not to do a complete shave and just let it be.

Today, I’m almost a couple months from the end of treatment and my hair is the definition of a hot mess. Picture a combination of cradle cap, a modest mullet and that terrible men’s hairstyle that looks like a wall at the front hairline. I’ve been wearing hats and oozing with jealousy at everyone and anything who has hair. This includes my German Shepherd and cat who just shed it throughout the house. I take a picture of my head every day and even though I feel my hair growing back, it doesn’t look like it in the photos. A watched pot never boils.

Having a buzzcut for the last six months is starting to take it’s toll. I am so ready to run my fingers through my hair again. No matter how many times my husband tells me I’m pretty, I still do a double take when I pass a mirror. I feel less feminine and despise how my bald head screams cancer patient. I’m ready to move on.

Who knows when my hair will grow back to what I consider a respectable length. But what I do know is that I can’t wait for one of those weekend nights, when we’re already late and my husband’s waiting for me to finish doing my hair.

Read on curetoday.com: Waiting for Hair: The Toll of Chemotherapy and Cancer

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A Chronology of Hair Loss