Step 12

Protect Your Family

How Do I Prevent Disease from the Start?

If we didn’t know before, the COVID crisis showed us all that prevention starts with you. The actions you take have a direct impact on your ability to stay healthy. For people who are immunocompromised, either from cancer, another health condition, or age, taking preventative actions become even more important. Even urgent.

Just as there’s an urgency with illness, there’s an urgency in prevention. Your journey—and hopefully this book—has shown you how diseases impact you and yours. You have witnessed the issues from a medical, emotional, and financial perspective. And you don’t wish this to be repeated on those you love. The good news is modern medicine has a lot to offer beyond treatments, and the opportunities grow in number every day. Every year, we gain new knowledge about how nutrition and lifestyle habits can extend life and give you more time to enjoy healthy years. Every year, new technologies emerge that can detect disease earlier and better vaccinate against it.

But as they say, time is of the essence. Don’t delay. Talk with those close to you, especially the next generation, your children. They may be years from any health challenges, but prevention always begins today. Now is the time to share the many ways we can protect ourselves from difficult diseases. Now is the time to establish healthy habits for ourselves and for those around us. After all, the best way to cure any disease is to not get it. The next best way is to find it as early as possible so it can be treated. In today’s world of fast-moving science, the promise of new therapies and diagnostics is exploding. We saw it firsthand during the COVID crisis. And we need to keep learning from it.

Lessons from COVID

The phones at the MMRF rang nonstop once the pandemic was officially declared. Patients were calling both me personally and Paul at the foundation’s helm. They had so many unanswered questions. And while Paul and I had agreed he would stay at the MMRF until we identified the next CEO (which we had), he felt responsible to get the team through this challenging time. He went to the office every morning at the same time he always did, met our CFO (the only other person coming in), refocused the team in a virtual world, made sure the systems would support everyone, and conducted weekly Zoom calls to stay in close touch. Together, we worked with our chief medical officer to answer the endless reasonable questions we were getting on an hourly basis.

Every patient was different, with vast and diverse needs:

“Should I go to the hospital for treatment?” (Only if you have to because you’re more likely to be exposed outside of your home. See if your clinician can switch you to an oral drug for now.)

“What is happening with the clinical trial I am in? Should I stay in it?” (Yes, if they can find a way to mail you the drug or get it to you safely.)

“How should I stay in touch with my doctor?” (Ask for telemedicine and make sure it’s covered.)

Then came the countless questions on the diagnostic testing:

“Do I want the antigen test, the antibody test? Where am I going to get it? How can I get it? When can I get it?”

And finally, “Which vaccine to get—Moderna? Pfizer? Astra Zeneca?”

Nothing could be scarier than having a history of cancer or being an active cancer patient knowing there’s a life-threatening microbe on the prowl, in this case a virus. Patients were rightfully terrified. The pandemic taught us important lessons about general prevention, such as the value in handwashing and mask-wearing, staying home when not feeling well, testing for the virus, and being mindful of the air quality and individuals in proximity. We all suddenly became much more attentive to people’s health status, age, and vulnerabilities. But for cancer patients, the bar to clear to protect ourselves and our families was much higher. Healthy people could avoid hospitals and doctor’s appointments for a while, and they avoided cancer screenings, too. (In April 2020, screenings for breast, colon, prostate, and lung cancers were lower by 85 percent, 75 percent, 74 percent, and 56 percent, respectively*; this likely means more cancer diagnoses for years to come.) Throughout the changing waves of the pandemic, cancer patients had to figure out how to manage risk. Some patients made difficult decisions about delaying certain treatments or putting off getting the COVID vaccine itself because of their cancer treatments. And being both high-risk for breast cancer and potentially high-risk for COVID (as myeloma weakens your immune system), I had my own difficult decisions to make. I decided not to miss a screening, but I would take precautions.

Beyond thinking about my own screenings and health, Paul and I strived to make sure our family remained safe from the moment the pandemic was declared and the death rates started to climb. Like everyone else who could stay at home, isolation set in as we distanced ourselves from other family members, including my mom and Karen’s family. Serenity came most when we were able to just get out and walk around our neighborhood. David and I started fostering dogs, which meant we were constantly taking them (and ourselves) out for much-needed walks. Bonnie, Bridget, Tiffany, and I became our own COVID pod, walking endlessly whenever and wherever we could.

But over time it became clear that this crisis was going to drag on until we got a vaccine.

As David expected, the hiatus that sports teams had to take meant his newly found job at NBC Sports was in jeopardy. Six months into the pandemic, the prediction became reality and he was out of work. In a smart move, David switched to online courses to stay busy and landed a job selling diagnostics. It turned out to be one of the best moves he ever made. Nicole had taken her incredible experience in Uganda and turned it into an application to Harvard Business School herself. She had extended her stay beyond the one year in maternal health and started her own nonprofit there called ACT (an acronym for Acrobatics Circus Troupe). The mission of the organization was to use performance art to support the children of Katwe, an under-resourced community in the capital city of Kampala. ACT continues today and became a critical resource for awareness and education during the pandemic. Now here she was as a second-year at HBS, sitting in her apartment doing classes online. Like every other student, she made the best of it.

When the vaccine became available, Paul and I ran to the pharmacy. It was an incredible, celebratory moment for us just to feel a bit of relief. As leaders at the MMRF, we felt equally responsible for the staff and the patients we served. And as more questions came in, we continually did the research to arrive at answers.

Dr. Ebright remained the person we trusted in terms of what tests to do and what vaccines to take. She was always available on telemedicine when we were dealing with potential infections, a scary situation given my history. And while we were all being told to stay out of the hospitals, she was the one person reminding us not to miss any critical screenings. By now, she knew Nicole, David, and me very well. She had worked with me to make sure Nicole and David received the right vaccines for their age, including the one for HPV. And she pushed me on the shingles vaccine. My visits with Dr. Ebright also reminded me not to miss my screenings with Dr. Port, even as COVID was surging again with a new omicron mutation that seemed to defy the vaccine.

It was a little more than a week before Christmas in 2021, full COVID protocols in force, when I went in for my annual MRI and Dr. Port first detected the earliest sign of breast cancer. “We saw something . . . . A spot . . . Could be nothing . . . . Let’s not take any chances . . . . We should go in and check it out . . . .”

I didn’t panic. I was a good patient at this point and knew the routine. My situation called for annual MRIs so the doctor could see the tissue better. Benign spots often showed up. The previous year she’d performed a needle biopsy on a questionable spot that turned out to be nothing to worry about.

“We found something right at the same spot as before, and it looks bigger,” she said. “I’d say there’s a ten, maybe twenty percent chance it’s cancer.”

I let her go on about next steps. She wanted to take a closer look with a surgical biopsy because it was too hard to maneuver needle biopsies on my flat chest. “I don’t trust needle biopsies on you anymore,” she said. “And I need you to hang around for some more imaging today so we get a new baseline on you.”

I agreed to the imaging and we began the process of scheduling, planning, and filling out forms for the surgery in January. I’d been through this possibility before and had learned not to sound any foreboding bells while I didn’t know anything for sure. It was normal for me to compartmentalize by now, especially over the holidays, and wait until I could undergo more tests. Part of me had known this was coming. It was why I was doing the screenings. As I had learned, the best way to prevent cancer is to understand your risk and find it early, when it can be cured.

Make Prevention Primary

Overnight, COVID made the entire country aware of prevention. Nicole and David were petrified of getting me, Paul, Karen, or my mom sick. Yet we still wanted to see each other. I was blown away by their mask compliance and tenacious testing. If there was the slightest risk they’d been in contact with someone, they stayed in their apartments.

When any of us did feel sick, we relied on Dr. Ebright and the world of telemedicine. Folding Nicole and David into her practice was one of the best moves I’d made. We waited way too long to move them from the pediatrician to an internist who would focus on their adult needs. It honestly took my seeing David sitting in the waiting room at nearly six feet tall with five-year-olds before I caught on.

Both Nicole and David are hugely aware of our lousy genes. All it took was one ancestry project they did in high school to see how many of their grandparents had passed away from cancer. They waste no time doing research when a symptom emerges. I don’t blame them. But even more importantly, as they get older, they have a clinician who is highly aware of their risks and keeps them on their game. Dr. Ebright knows our entire family history. She knows how to advise them moving forward. She keeps copious records for them in case they move and need to switch their care. Most importantly, she stays on top of the new methods of diagnostic testing.

Over time, and likely in Nicole’s and David’s early lifetimes, we will begin to see diagnostic testing in cancer that looks nothing like today’s. Companies are already emerging that can pick up potential cancer DNA through a simple blood test. And as these tests get refined with fewer false positives, it will be important that they are accessible and covered by insurance. This technology is something the next generation must be aware of and pursue.

The best way not to get cancer is to prevent it. The best way to protect your family is to share your medical history and let them know their risk. It will allow them to work with their primary care doctor to focus on good habits and prevention.


STEP 12: PROTECT YOUR FAMILY

WTDs

Find a Good Primary Care Doctor

Stay on Top of the Latest Preventive Science

Model Good Health Habits


WTD 1: Find a Good Primary Care Doctor

According to the American Association of Family Practice Physicians (AAFP), “a primary care physician is a specialist in family medicine, general internal medicine, or general pediatrics who provides definitive care to the undifferentiated patient at the first point of contact, and takes continuing responsibility for providing the patient’s comprehensive care.” Bottom line is, PCPs not only help you in acute situations where you feel sick, they’re your partner in preventing you from getting sick in the first place.

WTD 2: Stay on Top of the Latest Preventive Science

The science of preventive medicine is advancing at incredible rates. Stay up to date with your vaccines and screenings and ask your primary care doctor about every new vaccine and diagnostic test you come across. Here are some of the new preventive tools that are on the horizon and worth keeping an eye on.

WTD 3: Model Good Health Habits

This seems obvious, I know, but modeling healthy habits should be your first defense in preventing disease. In my life, I prioritize exercise, sleep, eating healthily, and maintaining relationships. According to the National Institutes of Health, “Seven out of ten deaths in the United States are the result of chronic diseases, which for many people can be prevented by eating well, staying physically active, avoiding tobacco use and excessive drinking, and getting regular health screenings.” The same applies to cancer. The Mayo Clinic website provides a number of tips to reduce the risk of cancer:

IN CONVERSATION WITH MARK MCCLELLAN


former commissioner of the U.S. Food and Drug Administration and former administrator of the Centers for Medicare and Medicaid Services

Mark McClellan, MD, PhD, is not only a physician but also an economist who has addressed a wide range of health strategies and reforms in his role as director of Duke University’s Margolis Center for Health Policy. He was pivotal in the US response to COVID, pushing for early tracking, testing, then prevention through vaccines to contain and combat the pandemic. His contributions ultimately helped our country reopen safely. I was curious to get his input on the parallels he’s made between his experience handling the crisis of the pandemic and the cancer world.

Q.What prevention lessons from the COVID pandemic apply to oncology today?

A.First, during the early phase of the pandemic, we had to learn who was at most risk for serious illness and death: the elderly and people with underlying conditions. These are the same vulnerable populations for cancer because age is the biggest risk factor for the disease, and older people are more likely to live with concomitant illness, too. Once you know where you stand on the spectrum of risk for a disease, you can then take precautionary steps to reduce your vulnerability. Secondly, the COVID crisis also taught us the importance of high-quality, reliable diagnostic testing that’s easily accessible and covered (free). Same goes for cancer—you want to spot the problem as soon as possible when it’s more treatable and less costly to overcome. And thirdly, the pandemic showed the power of prevention and practicing good hygiene—from washing hands often to getting good sleep. Similarly, the best way to manage cancer is to avoid developing it to begin with by practicing those anticancer habits.

Q.What’s your best piece of advice for people who want to protect themselves from serious illness?

A.Have a good primary care physician (PCP) that you like and who will be your partner and ally in all things healthcare related. This means having a trustworthy PCP who teaches health-promoting lifestyle habits—the importance of diet, exercise, and life-saving vaccines—and who stays updated with the latest technologies in prevention, including screenings and diagnostics. Your PCP is your ultimate guardrail against disease. The goal is to maintain optimal health to tip the scales in your favor when you get sick.

Q.How can we do better on the policy side?

A.Policy reforms can address three critical needs in the delivery and economics of care: improving health equity to help more people gain affordable access; expanding coverage to lower overall costs to patients; and promoting better outcomes through a greater focus on prevention. Unfortunately, many Americans are unable to access the full spectrum of preventive strategies available today. This is precisely why we need leadership in the policy realm to address these delivery and economic challenges and improve healthcare for everyone. You may not be in a position to reform policy directly, but you can have an impact through your voting practices and writing letters to your local members of Congress. No one should have to choose between what they need to stay healthy and what they can afford—from cutting-edge screening and diagnostic testing to treatment and beyond. This access is especially critical in the cancer world where you’re up against time with a serious diagnosis, and the financial burden can be large.

* * *

Another Christmas, Another January, Another Diagnosis

We celebrated Christmas Eve and Christmas Day as we always did—with my mom and the Andrewses. Despite the ongoing pandemic and huge rise in cases due to omicron, my family took the necessary precautions and checked all the traditional holiday boxes, including tolerating my awful cooking on Christmas Eve and playing the Fishbowl game that combines charades, Password, and Taboo. For us, with twentysomethings in the house, most answers were inappropriate but garnered lots of laughs. On Christmas morning, we woke up, Paul lit the fire, and we opened presents and made our usual breakfast. On the way to Karen’s house, we stopped as always at Paul’s parents’ cemetery, knowing how much he still missed them. My mom was staying with us again and we were grateful for the time. She was over ninety years old now and every holiday with her held special meaning. Even though it was getting harder for her to get around and she’d had a stroke, she remained staunchly determined. And she never let me forget her final wishes. While Karen would be her executor, I had been her medical proxy. We’d taken hours to make sure I knew what she wanted when her final days came. Most importantly, her wish to die at home.

In January, Paul and I took our COVID tests and headed to Mt. Sinai for the surgical biopsy. When we went back for the biopsy’s results, I had to go in alone due to the strict COVID restrictions. The clinic was busy. Dr. Port rushed into the exam room, sat down with a stack of papers—clearly my results—and got right to the point.

“The surgery looks great and the biopsy scar is healing perfectly. But we have the pathology back on the tissue and you have a very early form of breast cancer called DCIS.”

My mind started to reel. Ductal carcinoma in situ (DCIS), I’d later come to learn, refers to there being abnormal cells inside a milk duct in my breast that have not spread to other tissues. DCIS is considered the earliest form of breast cancer—stage zero. Still, it’s cancer.

She continued in rapid-fire doctor speak, using terminology that was everyday lingo in her domain. She quickly noted the cancer’s type, location, and margins.

“It’s low grade and ER-positive—all good factors. It does mean that moving forward, monitoring you, we need to look at every MRI with a very close eye. With your history, it’s likely we will continue seeing things and will need to continue doing surgical biopsies. It will be more visits, of course. There’s no way around that. So, let’s go through all this again . . .”

I was a high-risk patient due to the radiation I’d undergone with my myeloma. The words “DCIS” and “ER-positive” were somewhat familiar thanks to my sister’s journey. I could barely catch my breath before she dived into options to consider for next steps.

“At a minimum, you will be on active surveillance using MRIs and surgical biopsies,” Port said, “but we do have to treat this. Let’s go through the options.” Right off the bat, she said: “Mastectomy.” (The look on my face must have read horror.) “Lumpectomy with or without radiation or chemotherapy,” she went on, adding that there were additional tests they could do to see what was best. And then drug regimens using anastrozole or tamoxifen—a world I also recognized immediately.

That one has done a number on my sister,” I quickly interjected. Karen had chosen the drug route for her breast cancer, and it had not been an easy road. Port pointed out that my sister’s diagnosis was different. DCIS was not Stage III breast cancer. While I could learn from Karen’s case, it was not the same as mine.

Then came the list.

“See the medical oncologist,” she said, reminding me that she’s the surgical oncologist with her own bias. “See the radiation folks . . . even talk with other surgical oncologists. And, of course, talk to your sister. Take your time. You have time. Let’s do what’s right for you. I am here for you. You can call me anytime. I am going to do another MRI in three months and see you then at a minimum.”

Port handed me a piece of paper with the names of the other doctors to consult. Swirling always at the back of my mind was the thought that I don’t have time for this. I can’t put my family through more cancer again. I could see the calendar filling with appointments, days off work, mileage, support. It was all too much. WTF? reverberated in my head yet again as I remembered the beat-up calendar from so many years ago, and the many appointments that filled it.

Clearly, I had some homework to do, and it was up to me to get the best information. I left in a daze as I checked out, exited the building, and found Paul parked illegally out front waiting for me.

“How’d it go?” he asked as soon as I slid into the car.

“I have breast cancer but it’s early,” I said. He looked shocked, barely able to process the news, and I told him again.

“I just didn’t see this coming,” Paul said.

Once we were on our way, I explained to him that I had options. But we both went a bit quiet. As I carefully punched “DCIS” into my phone in search of some online resources, a text from Nicole came in promptly: “How was it? What did they say?” I called her right back.

“It’s going to be fine, Nicole. I do have breast cancer but it is so early. I honestly feel a bit fortunate, like perhaps I dodged a bullet here. Do you understand what I’m saying?”

“Are you sure you’re telling me everything?” Nicole probed.

“I will let you read the reports, no problem,” I said. Now she was old enough and I knew she just might take me up on that.

“I love you.”

“Love you, too. I’ll call David,” I said, knowing she’d text him immediately upon hanging up. David’s response was quintessential:

“You’ve got this, Mom.” I would later learn that this diagnosis, now that he was an adult, was tougher on him. But in the weeks and months to come, he and his sweet girlfriend, Abby, would help get me through the surgeries and infections.

Days later, I knew it was time to tell my mom. I couldn’t do it over the phone, so I drove to her farmhouse four hours away and we went to lunch. Her response was typical “Grammy.” “Everyone gets breast cancer. You know how to do this. You’ll get through it just fine,” she said.

In her mind, she had watched me move through multiple myeloma, a blood cancer, for decades. And while she would never say she was proud of my work, as a former nurse, she knew the impact of my long days, constant travel, and pharma meetings. She had attended every major fundraising event, listening to each emotional speech I took weeks to craft in an effort to raise desperately needed funds. She knew how formidable I’d been to find new life-saving drugs that would help me and others. She, too, had seen my caregiving skills as a melanoma patient herself. It was my job to balance more treatments and surgeries with her quality of life. It was my job to find homecare so she could live in the house she loved. Even now, looking across the table at lunch while she ate her French fries (which she had ordered so I could take them off her plate), her face was again laced with stitches from more cancer surgeries. Her eye still drooped just a bit from the surgery she’d endured without a single complaint years before.

This was my mother—a woman hell-bent on not worrying her family. She wore her battle scars proudly. The situation was practically comical. I appreciated her levity but also knew that despite my not-so-serious breast cancer, I needed to make decisions. I needed to make contact with a host of people to personalize my own treatment going forward. I was calm and cool, but I wouldn’t say I was collected yet.

I had done my research. I knew everything about DCIS. I had spoken with leaders in the field. The answers were not consistent, but they never are. I listened closely to those who had known me through myeloma. I listened closely to my primary care doctor. But it was the one statement I heard from the head of a breast cancer center that resonated most: “Kathy, you gave up your entire life, decades of your life, finding a cure for myeloma. In one surgical procedure, albeit a tough one, you can be cured. Why would you not do that now?” My decision was made.

My breast cancer was the chance to put everything I learned to the test. The twelve hard-learned steps that cured my myeloma emboldened me. And those steps would prove to work the second time around:

  1. Understand the Diagnosis: I did the research, asked the right questions, and googled wisely.
  2. Meet the Specialists: I met the doctors to fully understand my diagnosis and options.
  3. Rethink What Matters: I went through my own reset: established my personal goals to inform my treatment decisions (opting to treat aggressively to be done with treatment and off the roller coaster as soon as possible).
  4. Make Your Action Plan: I devised a plan (and adapted when things didn’t go accordingly).
  5. Get the Right Team: I curated the right medical team and kept them all informed.
  6. Get the Right Tests: I got the critical tests to inform my treatment choices.
  7. Get the Right Treatments: I made the treatment decision that was right for me.
  8. Know the Right Trial: I didn’t need a trial, but I used everything at my disposal (research, coordinating medical teams) to navigate the post-surgery complications.
  9. Reset (Again): I underwent another personal reset having gotten through my cancer (more on this in a moment).
  10. Recognize Your Caregivers: I leaned on my personal support team every step of the way, communicating clearly with them to get what I needed, and making sure they knew how much I appreciated their help.
  11. Never Miss a Screening: I found the cancer early when it was curable by knowing my risk and undergoing the proper screenings.
  12. Protect Your Family: I continue to focus on prevention and talking to my children.

The twelve steps worked . . . as best as any playbook can. But I was reminded in the process how humbling cancer can be. It’s a formidable foe and even when you have the background to do it all right, you can still screw it up. It was hard to integrate the care between Dana-Farber for my myeloma and Mt. Sinai for my breast cancer. There were times in the ERs when I was too sick to talk and wished I’d had everything written out in one place. And managing coverage was a nightmare. I actually ended up paying a significant amount out of pocket because I missed that step on the paperwork in the surgeon’s office.

But what I’ve learned along the way, what finally hit me in the face in real-life wake-up-call Technicolor was this: How you save your life from cancer isn’t enough. You have to think about how you live your life, as well. The people who know me are likely surprised how this playbook asks you to keep sitting down and evaluating your life during your cancer journey. They will tell you, that’s not Kathy. She’s direct, brutally direct, and fast. Check that box, do it now, don’t wait for tomorrow. They would be right: I was fearless. But as I learned writing this book, being fearless comes with a cost. That’s what I want to share with you now, so you can learn from my mistakes. Here goes.