Turns out, it’s easier than I thought to get a second opinion. A family friend worked at Johns Hopkins. In a phone conversation where he gave me an overview of what treatment would look like, he said, “You should get your second opinion at UNC Lineberger Cancer Hospital. One of our Fellows went down there. She’s great.” Bingo. There were a couple of things I learned from that conversation:

  I didn’t have to stick with the doctor at Duke. I could shop for a better fit. Preferably, one that didn’t use the word lob when referring to my breasts.

  The Johns Hopkins doctor made getting a second opinion a forgone conclusion like “Of course, lady, that’s what you need to do.” Duh. I hadn’t thought about getting a second opinion, so this was a light bulb moment.

  Could it be as easy as calling up the UNC Lineberger Comprehensive Cancer Center at Chapel Hill and requesting that doctor? Yep. It was. I looked her up on their website, dialed the number, and scheduled an appointment. It took two weeks, but in doctor time that didn’t seem like too long.

  When the oncologist at UNC walked in the room and I explained my situation, she was not surprised. It seemed she had given loads of second opinions. After she read through my history (Duke and UNC share medical records and now with MyChart many hospitals can), she walked through her breast cancer treatment protocol. Her recommendation was third-generation chemo. A more aggressive treatment schedule with more chemo. As someone said along the way, “You’re young. If you can handle it, hit it with all you can.”

  What this told me was that two different doctors, at two different leading cancer centers, had two different treatment recommendations for me. This is exactly why I got the second opinion. I wanted to see if the recommendations would be the same. They weren’t. What now?

  I made the choice to get my oncology treatment at UNC. Why?

  The treatment protocol was more aggressive. I was 45 at diagnosis. I had a three-year-old daughter. Living a long time cancer-free was my goal.

  The UNC Hospital doctor made me feel heard. She even said if I didn’t want to follow her protocol, she’d work with me on what I wanted.

  I just felt better in the offices at UNC Hospital. I don’t know how else to explain it. As someone said, “Choosing a hospital and medical team is not a short-term commitment.” It’s a lifetime partnership when it comes to curing breast cancer. I trusted my intuition and went with the doctor and facility that felt right.

  In my 45 years, I had given a lot of weight to the opinions of others. Going through cancer treatment taught me that I needed to listen to my inner voice or knowing. Thank goodness for that conversation with the doctor at Johns Hopkins. I never even thought about getting a second opinion. Everything was moving so fast. Plus, I had a leading global oncologist working with me at Duke. But if it’s not a fit, it’s not a fit.

  I know other women who have opposite stories of their second opinions. When they saw two oncologists, both offered the same treatment plan. Then it came down to which facility was more convenient or felt right to them. Getting a second opinion never hurts and in fact it may save you.

  2. Assemble Your Care Team

  One of the resources I found on my cancer healing journey was a book a friend from college wrote: The Health Revolution: Give Yourself the Healthcare You Deserve, by Dr. Jade Wimberly. In the first chapter, Dr. Jade talks about the importance of a care team.

  Dr. Jade tells a story of “a friend diagnosed with stage 4 colon and liver cancer with possible ovarian metastases.” The friend’s initial oncologist gave her less than three months to live saying that chemotherapy would not help, verbally signing her death certificate. Her friend didn’t accept these terms and instead assembled a care team that “reinforced her right to live,” which she did for another 19 months. That’s more than six times longer than her doctor gave her to live.

  It’s funny, I had a tough time finding a good definition of what a care team is on the web. The Mayo Clinic has one, but in my experience, that definition is too constrictive, only outlining people who work for the hospital or clinic. My experience says a care team is broader. And the team leader of the care team is me. I must take on the responsibility of managing and directing my care. This means being my own advocate and working to find caregivers like doctors and specialists who align with my health goal. That goal is simple for me: to live a long damn time. Maybe the concept of a care team is evolving as I write.

  The cancer patient’s care team “consisted of a more progressive medical oncologist, a naturopathic oncologist, radiologist, surgeon, psychologist, chiropractor, a personal trainer, close family, and a loving partner.” When I first read that, I thought, There are naturopathic oncologists? If I knew that, I’d have had one too. Then, when I read it again, I realized I had assembled my own care team. It wasn’t something I was conscious of doing. I just knew I needed shoring up, and it would take more than one allopathic doctor to do so. Here’s who I gathered for my care team: a surgeon, an oncologist, a radiologist, a radiation oncologist, an acupuncturist, a reiki healer, a shaman, a yogi, a nutritionist, a psychologist, a babysitter, The Food Fairy (meal prep), friends, family, and David, my husband (who now says he barely remembers me going through treatment; the overwhelm was so much that he’s blacked it out).

  Dr. Jade’s description validated for me the care team I assembled. It took work to find and vet the people. My tried-and-true gathering tool was asking questions. I asked lots of questions to everyone I met who had a connection to breast cancer treatment. For example, when I met with a doctor or physician’s assistant at the hospital, they pointed me to the hospital resource center. That’s how I found my psychologist . . . and a free wig!

  For acupuncture, which previously helped me conceive my daughter in California, I asked my NC oncologist for a local recommendation. She pointed me to a well-regarded practice in my new hometown.

  Finding a yogi was easy. Google. I found a wonderful studio with multiple teachers and one specializing in kundalini yoga.

  Uncovering my reiki healer was more difficult. Google turned up one person in the area. She didn’t run a regular practice. I ended up asking around for a few months. Finally, my acupuncturist recommended a woman who gave me a verbal disclaimer that I’d be stepping into the “woo-woo.” I said, “Bring it.” More woo-woo sounded good.

  The term woo-woo . . . I’m not talking about the alcoholic shots of my teens and early adulthood. Do you remember that drink? Peach schnapps, vodka, and cranberry juice. I get a chill thinking about it. Yuck. No, I’m talking about the Cambridge Dictionary definition that says: “Based on . . . beliefs . . . rather than reason or scientific knowledge.” For me it means walking in the world of spirit, intuition, and emotion. When I’m connected to this power within me, I feel grounded. I feel whole. I feel like enough. In my world woo-woo coexists with belief in God as well as the ascended masters like Jesus and Buddha. But hey, that’s me.

  It took time asking questions and trying to feel out what I needed.

  Imet with a 30-year breast cancer survivor who is the mother of my dear friend Heather. Sue is an inspiring woman who dedicates much of her life to sourcing funding for breast cancer research. One of the things she said to me that stuck out was: “We’re survivors a lot longer than we are patients in active treatment.” That meant in making health my number one priority, I needed to keep my care team active. My first player, my surgeon, was off the team. When I saw him for a follow-up appointment he said, “You’re doing great. Don’t come back and see me. Now, go live your life.”

  My second and third players stayed on the team, my oncologist and radiation oncologist. Nice thing is now I only see them once a year. I’m keeping my yogi and reiki healer on a regular schedule. I need to move any uncertain energy that arises. I’m only occasionally checking in with the acupuncturist and shaman.

  I’m scouting for a new psychologist. (Don’t you like all the team jargon? My lacrosse coach husband is a deep influencer!) The one I worked with was specific for families going through breast cancer treatment. Now on the other side standing firmly in survivorship, I can see emotional wounds that continue to need tending.

  My latest scouting search is for a new general practitioner or GP. I want one rooted in functional medicine and who connects with naturopathic medicine. I want it all when it comes to this person and their practice. I think I’m getting closer to finding this.

  What I can see now is a shift after active treatment. My life is about health. Feeling healthy. Being healthy. Without my health, I’m no longer on the planet. It’s that simple. Creating and evolving my care team is one of the best things I can do for myself.

  3. Prep for Doctor’s Visits

  In our tech-driven world, it seems like there is an app for everything. Truth be told, I’m not really an app person. I know people who have their phones filled with apps, who talk about discovering a new app like it’s gold. My latest download was PBS Kids. Says a lot about me and how I use my phone.

  However, there’s one app that was always there when I needed it. It kept me organized for doctor visits, and held a history of conversations that I knew I’d forget.

  Get ready, it’s a real breakthrough . . .

  The Notes app on my iPhone!

  Seriously, it was the thing I kept going back to before every doctor’s visit.

  For my stage 3A hormone receptor breast cancer, I chose the full monty of treatment: surgery, chemotherapy round one, chemotherapy round two, and radiation therapy. I saw doctors a lot.

  When I could, I took another person to my doctor’s appointments to remember what the doctor said and keep me on point with my questions and concerns.

  My first stage of treatment, surgery, felt like it happened so fast. I was diagnosed. Then bam, I was on the operating table. I was in complete shock over my diagnosis. A kind of PTSD. I needed all the help I could get. I used the Notes app on my iPhone to record any thought I wanted to go over with my care team. I labeled the Notes “Travis-Doctor.”

  The genius of the Notes app is that it’s always with me. I mean, not in the shower, but probably on the kitchen counter. This meant if we were eating dinner and I thought of a question, I could type it in. If I was at the library story time and a question popped up, I typed it in. Even on a conference call. Well, especially on a l-o-n-g conference call. As questions came up, I typed them in.

  Now, when I look at my Notes for “Travis-Doctor,” there were two subsections: oncology and radiology. Under “Oncology,” there was a list of questions to ask my doctor on my last visit before my last chemotherapy treatment. The most important at the time? “How do I take care of my nails?” At the bottom, there is a recipe for creating a soak for my fingers, as the chemo caused my nails to separate from my skin. A common side effect. It didn’t hurt. More annoying than anything. (I share this recipe in the Nourish section of this book.)

  My point is, I really used Notes to prep for doctor visits like I would a big corporate meeting. I also needed to take notes after asking all those questions. Usually asking my doctor to slow down. I never really liked studying or prepping for tests. But I knew I could not slack on getting the info I needed from my doctor at those precious appointments. The Notes app was my little memory bank, there when I needed it, holding information I might forget, and keeping me on point to get answers.

  4. Speak Up!

  There is an underlying current that runs throughout this book. I wonder if you will notice it. It’s the fact that before I started this journey, I did not speak up or advocate for my health. There were plenty of times in my life when I advocated for my opinions at work, but never when faced with a health challenge. I saw doctors as the experts, and questioning their authority didn’t cross my mind.

  Iremember reading an article about a breast cancer personality type, which suggested there were common personality traits among breast cancer survivors. One of those traits was “anti-emotionality,” which means the absence of emotional behavior or a “lack of trust in one’s own feelings,” so says the National Institutes of Health’s website. This study was later debunked due to a lack of evidence. However, I’d seen this trait in myself especially as it related to my health—this lack of trusting my own feelings and beliefs. This trait showed up when I was going through fertility treatments to conceive my daughter. It was probably one of the reasons I developed breast cancer in the first place.

  I’ve had this discussion many times with friends, colleagues, family, and other survivors. The question that sparks the discussion is, “Why do you think you developed breast cancer?” The short answer? I don’t believe it’s just one thing that caused the cancer to develop. I believe it was a buildup of unconscious health decisions over time—things that put me at a higher risk, like taking Depo-Provera progestin-only birth control, having fertility treatments, and having a child after 40. And this is not by choice, but by having dense breast tissue, I was also at a higher risk. All of these things over time made my body ripe to develop the cancer and not be able to fight it off.

  As I shared earlier, many years ago, my fertility doctor told me my budding pregnancy was in one of my fallopian tubes, and not in my uterus where it was supposed to be. My intuition strongly told me, That’s not true. But sadly, I didn’t listen to that internal voice. I did what the doctor told me to do, which was to end the pregnancy before it killed me. It turned out the pregnancy was actually growing in my uterus. My intuition had been right. It was trying to guide me to my greatest desire at that time, but I didn’t listen to it. It was a devastating lesson to learn, but I got the message and I want to share it with you:

  Trust your intuition.

  Speak up.

  Advocate for yourself.

  During my breast cancer treatment journey, I reminded myself of this whenever I met with my doctors. If they were going too fast, I wouldn’t just nod my head pretending I understood. I asked them to s-l-o-w down. If something didn’t make sense, I asked them to stop and explain it again. And when I had to make a decision but didn’t feel ready to do it, I asked for more time. This helped me hear what my internal voice was saying. Then, I let it be heard. This was tough for me, all this standing up and asking for what I needed in the moment with doctors who were experts and, let’s face it, sometimes intimidating. Luckily, I’d assembled a care team that was respectful and honored my requests. But I had to keep reminding myself to advocate and speak up for my needs in the moment. It was like I had to give myself conscious permission to speak up and be seen on this treatment journey—something I’d never done before when it came to my health. It was hard at first, but just like anything, as I practiced it more and more, it got easier and easier.

  There was also a question I asked my doctors when they gave me treatment recommendations and I had to make a decision. I asked:

  “If I were a family member, what would you tell me to do?”

  This immediately connected me to the doctor and their humanity. Their detachment from my personal situation was broken. When asking this to the doctor, their whole physical demeanor changed. It brought them into the moment I was having versus their day at work. Being a surgeon, an oncologist, or radiation oncologist must be a tough job. I can’t even imagine going through one of their days at work let alone a career. I had empathy. I also knew that to get the best care and attention, I needed their genuine presence in that moment. When I asked this question, they stepped in.

  5. Buddy Up

  Just the other day, I ran into one of my cancer buddies, Jen. Like me, she had a more advanced cancer. And also like me, she chose to change the way she operated in the world after her diagnosis. Her hair was still growing out from the chemo short and spiky. It meant she also had the crazy good-looking chemo skin.

  No one ever talks about the perks of cancer treatment. There aren’t many, which is probably why. But it seems finding bright spots would be welcomed in this laborious and heavy treatment protocol. One bonus to chemo was after I finished treatment, my skin was glowing. The chemo causes the body to regenerate itself, and that led to a younger-looking me for a bit.

  When I introduced her to my husband, she said, “This woman helped me through treatment.” That, my friends, is the definition of a cancer buddy. It can be someone who is literally going through the exact same treatment protocol with you at the same time. It can also be someone who has gone through the whole shebang before you. Or, like the buddy I just mentioned, it can be someone who you help after you are finished with your treatment.

  I had another cancer buddy when I started treatment. As I’ve mentioned, we had just moved back to North Carolina when I was diagnosed. Not the way you really want to start a new chapter of your life. But it did mean that I had some very deep connections still rooted in North Carolina. One of my best friends from my hometown of Salisbury, Meg, said, “You know there’s a woman here who had the same diagnosis as you. Maybe she could help.” A few texts later and I was connected to Kathy who was a couple of months ahead of me with the same diagnosis and same treatment protocol. The connection was a godsend. She took the time to share her treatment journey with me: what she was doing, what helped, how she was coping. One of my favorite moments during this journey was when she came by for a visit to my home in Durham. She was being treated at Duke and we planned for her to stop by our house. It was great to meet in person and hug each other. It was also important for my daughter to see another bald-headed mama who was going through treatment. It normalized a very not-normal situation.

  My daughter, who was three at the time when I was diagnosed and treated, does not remember much of what I went through. She doesn’t remember my bald head even though she was there when it was shaved. Now, I see this as a reminder of a child’s resilience. I also now see the resilience in me.

 

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