Had I Known

by Joan Lunden

  3.If you are a person who wants to do everything reasonable to beat this, I would do the AC. It is a riskier position to omit this drug sequence based upon current evidence. In the future, science may make us smarter, but right now we are stuck.

  4.If you choose to decline the AC, I would ask 1) do you consider yourself a lucky person, 2) can we make a strong case that you DO NOT have the most virulent form of triple negative breast cancer, 3) if the unthinkable happened (recurrence in lung, liver, brain) and you had declined the AC, would you forever “beat up” on yourself for not putting up with the further inconvenience of the eight-week period of the ddAC?

  5.By the way, AC can be given one day every three weeks x 4 and may have the same benefits of ddAC.

  I know that this is not exactly what you were hoping to hear, but I think your cancer team needs to do the best to cure you and make sure that you remain a citizen of the planet for absolutely as long as possible. Your team can support you through toxicities of future treatments.

  You mean too much to too many people to do less than what seems to optimize outcomes in the current medical literature.

  This discussion is always a bit clearer in person. Wish I was there in person to help you along. I am always available to you by email or phone!

  Tracey

  Wow!

  DO I FEEL LIKE A REALLY LUCKY PERSON?

  That question really stuck with me.

  It was like I was suddenly playing cancer roulette.

  Maybe there were no cancer cells left in my body, but then again, maybe there were.

  Was I feeling lucky?

  An image of Clint Eastwood in Dirty Harry popped into my head.

  Was I willing to bet against the house?

  Could I just go on with my life, walking around with my fingers in my ears, always hoping I was right?

  No way.

  I could never be that irresponsible.

  I could never live my life that way.

  I had to take the second round and consider it my insurance policy that I’d killed every possible cell that would have a chance to grow into another life-threatening tumor in the breasts or elsewhere.

  Thanks to that email, I learned so much—especially that when it came to triple negative breast cancer, there was a tendency for the cancer to bypass the lymphatic system and go into blood vessels. So when everyone was reassured by the pathologist saying I had nothing in any of my lymph nodes, it may not have meant that much. I was more concerned that a cell or two might have flaked off and gone into a blood vessel and traveled elsewhere. And since I had triple negative breast cancer, a fast-growing aggressive cancer, it could get a foothold and grow quickly, so it was imperative to douse it with a strong chemo.

  I was eternally grateful to Dr. Weisberg for her candor and caring ways.

  Wow.

  What a turnaround.

  First I thought I needed the tough AC round, then the great news that I probably didn’t, and now there I was, right back to the tough news that I must go through it after all.

  Such is life—especially when facing death.

  So much for growing back my eyebrows and eyelashes any time soon.

  For real.

  The night before my first appearance as a special correspondent for Today, as I was getting ready for bed, I washed my face. I had done that many times during my chemo treatment without incident. However, this time, when I looked up into the mirror, it appeared as though a part of my face had been . . . erased.

  Gone.

  My eyebrows and eyelashes had been washed away.

  I woke up with eyebrows and eyelashes, and the night before I was set to appear on national television, they were washed down the drain.

  Really?

  The night before doing a breast cancer series on Today?

  You’ve got to be kidding me.

  C’mon!

  I was completely shocked by the face staring back at me in the mirror.

  It was the face of a sick woman.

  A cancer patient.

  I examined it almost as if it were someone else’s face staring back at me.

  It was SO weird.

  I walked back into the bedroom to tell Jeff what had happened, trying to keep my composure, but he had already fallen asleep. I didn’t want to wake him over something so trivial—I mean, it wasn’t trivial to me, but given what I’d been through over the past few months, it could appear inconsequential to someone else.

  I got into bed knowing and feeling that I really looked like a chemo patient now.

  Oh dear.

  What will people think when they see me tomorrow?

  The Today show put me up at the Essex House hotel in New York City, where Sarah and I stayed for the entire week. Every morning Emir came to the room at five to do my makeup, sans wig. By seven, we were in the car sent by the show, heading to the Forty-eighth Street entrance to 30 Rock, the location of the Today show studio.

  I was a little nervous, walking into Rockefeller Center that first morning. It was strange but not like I thought it would be. Everyone was so warm and welcoming that you would have thought I used to be the host of this morning show. There was absolutely a sense of community, of family.

  Maybe it didn’t matter what network you worked for. Perhaps we all belonged to that special fraternity who awakened in the dark and prepared to rouse the rest of America each day. Only a small group of us can say we’ve done that for a living. It’s both an honor and a privilege, one I’ve been especially grateful to have had in my life.

  People have asked me many times if it seemed strange being on the Today show set, but frankly, it felt like home. I know that may sound strange. But they made me feel like it was a “welcome back to morning television” event, so it felt natural as opposed to awkward. It was like getting back on a bike; I felt relaxed and at ease within minutes of the camera rolling. I give tremendous credit to Matt Lauer, Hoda Kotb, Natalie Morales, and everyone on team Today who went out of their way to make me feel so at home.

  On my second morning there, show producers loaded the plaza outside Studio 1A with hundreds of women who had breast cancer and were currently going through chemotherapy. Many had come that morning proudly exposing their bald heads. I can’t say if it was a sign of solidarity or a salute to my decision, but there sure were a lot of beautiful, bold, bald women that rainy and cold morning out on the plaza.

  It was purely a celebration of awareness and the breast cancer community.

  And oh, what a tight and loving community it is.

  When I walked out onto the plaza before the segment began, I was able to take pictures and talk with a few about their experiences. THIS was why I was there. The connection I felt was deep and heartfelt. We had so much in common; there was a bond that tied us together in an indescribable manner.

  That segment was great, and afterward, Sarah and I ventured across the 30 Rock concourse level for a hot hazelnut coffee, my favorite splurge. After standing outside in the cold rain for a couple of hours, I was chilled to the bone and needed something to warm me up. Along the way, Sarah and I saw women wearing their #PinkPower T-shirts. I stopped to speak with all of them, but there was one who stuck out in my mind. She was about twenty-eight years old and had just given birth to the cutest little baby boy, sleeping in the stroller next to her. She was completely bald, proud, and so excited to be speaking with me. As we walked away, I couldn’t stop thinking about her. She was a new mom, with so much life ahead of her. I was deeply impacted by our exchange.

  She’s so young, I thought many times throughout the day. I couldn’t help but wonder how she’d found out about her cancer, given the guidelines to get your first mammogram at age forty. She was walking proof that this belief needs to be reconsidered. While it’s still true that most breast cancers don’t occur until later in life, more and more younger women are getting breast cancer. The question is why? Hormones, insecticides, pesticides, and chemicals in processed foods? Or is it environmental? Or cou
ld it be the chemicals absorbed through the everyday products we’re exposed to inside the home, from those we use to clean, to the lotions we slather all over our skin? Even lipstick is on the list of potential dangers! It boggles the mind to think about the exposure and possibilities, and yet it is my belief that not enough is being done to alert younger women to look for the signs.

  Later, after the segments on the plaza, Sarah and I went back to our hotel room and looked at the amazing response coming in on social media. What a new world that was for me. I was hearing from thousands of viewers all over the country! I was hearing not only their well wishes but also their concerns, their fears for their own health, their frustrations at not being allowed to have lifesaving tests, and their confusion about how to efficiently interact with the medical industry in order to properly advocate for their health and longevity. They had families and young kids who needed them—they couldn’t afford to die and leave their families!

  They needed help.

  This was just one message I read that day demonstrating the confusion and the frustration and, in the end, the sadness and the positivity that can be found among women trying to get properly diagnosed and cared for.

  My story starts back in February. My husband and I traveled to Australia to go to three Bruce Springsteen shows and drive up the Gold Coast. The night of our last Springsteen show in Brisbane, I got bitten a few times by what I thought was a mosquito on the outside edge of my hand. It itched but soon stopped. The next thing I know, it swelled up and was purple. It was similar to a blister, so I lanced it to try to dry it out. When I let my hand hang down, it hurt like heck and throbbed. I kept icing it, even as we started our journey home through Fiji. It had started drying out and healing by the time we got home on 3/4.

  Over the next week I developed pain under my right arm; it was so painful I could barely lift my arm. I was also supposed to go to numerous functions, but declined because I felt jet-lagged. My husband talked me into scheduling an appointment with my doctor. I called on 3/10 and got in with Mohammed Ahmad Al-Hijji, MD, on 3/12. He was a resident, not my normal doctor. I was afraid it may be breast cancer. He and the director of internal medicine at Hopkins Wymann Park ordered a mammogram, ultrasound, and blood work. The mammogram was negative but the ultrasound showed two swollen lymph nodes under my right arm. I had the blood work done on Friday. So we were thinking it was related to the spider bite, not breast cancer. We scheduled a follow-up appointment for the afternoon of 3/19.

  The morning of 3/19 I had an appointment with an orthopedist and was diagnosed with frozen shoulder on the same side. We met with Dr. Al-Hijji and the director that afternoon. They said my blood numbers were extremely low, white count, red count, platelets, etc. They were all extremely low. They said they wanted me to see a hematologist immediately, and to do that, they wanted me to check myself in to the emergency room and have them admit me. They said if I tried to schedule an appointment, it would take over a month and they didn’t even want me to wait a week! They sent me on my way with a box full of face masks. I went home, packed an overnight bag, and did what they said.

  The emergency room doctor said she didn’t know why they were being alarmists but agreed to redo the blood work. They ended up admitting me just before midnight. On 3/20 I was diagnosed with leukemia. I began an aggressive course of chemo the next day. As it turned out, Dr. Al-Hijji was also doing his residency on the leukemia floor of the Weinberg Cancer Center of Johns Hopkins, it was nice to see a familiar face. I never cried and I didn’t go into “shock.” It wasn’t until a week later that we found out I have a rare type called acute bilineage leukemia. Only 2 percent of leukemia diagnoses are this type.

  Once they diagnosed me, they knew immediately that I would need a bone marrow transplant to survive. They knew early on my sister would be used only as an absolute last resort because she has MS; however, she ended up not being a match, so we had to go to the bone marrow registry.

  As luck would have it they found me two perfect matches! I was scheduled to have a maxi transplant on 6/17.

  I have also been type 1 diabetic since I was nineteen. Up until my first blood transfusion I never knew my blood type. My blood type quickly became my mantra. I actually had to explain it to a few people, but once they got it, they thought it was pretty cool.

  Jennifer A.

  When I opened up the attachment to the email, I found a photo of the blood from her transfusion. On the side of the bag, it read, “B (RH) Positive.” In the midst of all the hysteria and fear, Jennifer found a focus in the “B Positive” on the bag of blood that was saving her life. And while her story isn’t about breast cancer, it is indicative of two things I have learned along the way.

  First, you have to be your own advocate on this journey. No one knows your body and what feels normal better than you do. If something doesn’t feel right, say something. Tell your doctors. Don’t hide it, because they can only base their determination on the information you are giving them.

  Second, your mental attitude matters. An optimistic outlook, even when things look bleak, will help create a more positive outcome.

  I was back on the Today show three more mornings that week, finishing out my special feature with a segment called “Ask Joan,” during which viewers wrote in online and I spent most of the morning at a laptop in the Orange Room (that week it became the Pink Room), answering their questions during a live Facebook session. I wanted to answer as many viewers as possible during the first hour of the show, reading and typing at lightning speed. I loved the interaction.

  In the third half hour of the show, I moved to the Today show desk to be with Matt Lauer. As the segment opened, Carson Daly was still in the Orange Room, along with Dr. Susan Drossman, a prominent New York radiologist. Carson read a couple of questions from Facebook, which I answered and then threw to the doctor for her expert medical opinion. After a few more questions, Matt turned to me and said, “We have one more question for you, Joan, and it comes from nine-year-old Kimberly from Greenwich, Connecticut. She wants to know why she can’t have her ears pierced like her big sister.”

  Wait.

  What?

  I got it right away.

  Matt might have been reading the question off a viewer question card, but he was definitely talking about my daughter Kim.

  “Wait a minute, Matt, are we turning now to personal questions about my kids? That’s got to be my daughter you’re talking about!” I said.

  Matt said, “Turn around and look behind you, Joan. Your entire family is here to support you this morning.”

  And there they were!

  I never, not for one minute, expected the Today show to surprise me with my family!

  I loved it!

  I heard from so many people how wonderful it was to see my whole family together.

  What a great ending to a great week!

  Thanks, Today show!

  CHAPTER 26

  Wrestling with Cancer

  Had I done the testing I needed to do, the treatment I would have gotten might not have been as aggressive. You don’t save yourself anything by putting screening off. The breast cancer is either there or it isn’t, whether you get screened or not. It does not change the reality. It only changes your options.

  ELIZABETH EDWARDS

  Estranged wife of presidential candidate John Edwards, diagnosed with breast cancer in 2006

  There are some opportunities in life that just seem like too much fun to pass up, regardless of how lousy you might be feeling. Appearing on WWE RAW, on behalf of Susan G. Komen for a special event in honor of Breast Cancer Awareness Month, was definitely one of them.

  Kathie Lee Gifford and Hoda Kotb were the scheduled guests of honor in the opening act that night at the Barclays Center in Brooklyn. I was supposed to come out in my personally bedazzled “Courage, Conquer, Cure” T-shirt, escorted by Triple H, to say hello and help introduce ringside breast cancer survivors. No doubt, this rocking, brawling night of wrestling was a dr
essed-down event, so I decided to wear a little knit cap over a hairpiece that was like a short “fall.” I thought it looked casually rockin’ cute and perfect for the occasion.

  WWE called to say that Sarah and I would be picked up by a helicopter at the Westchester airport. While we tried to act cool, as if this happened to us all the time, we were quietly high-fiving each other when we heard about our slick ride. We were told we’d be sharing a ride with Kathie Lee and her assistant. That sure beat sitting in traffic, and it cut way down on the commute time. The helicopter made its way along the East River in the glare of the afternoon sun, landing on a helipad on the Lower East Side with the Statue of Liberty in the background. This was one of those rare New York moments that confirmed once again how lucky I am to live in proximity to one of the greatest cities on earth—that’s how it must feel to be a rock star!

  When we arrived at the Barclays Center, we were brought downstairs to an area in the arena where all of the wrestlers were gearing up for their show. We were escorted into a private dressing room where we waited for the evening to begin. At one point, everyone broke out into applause backstage. When we looked at the TV, we saw that The Rock was there for a special surprise appearance. It was a super-cool moment. While I was waiting to go on with all of the wrestlers dressed in what appeared to be their fancy underwear, Stephanie McMahon, the daughter of WWE founder Vince McMahon, came over to say hello. Vince McMahon got up from behind his monitor at the control center and came over to greet me, too, giving me a great big unexpected hug. The event was loads of fun and brought a little levity to the battle I was waging against this disease. Not just for me but for so many women facing the same prospects, perils, pain, and pressures.

  The next day, I had to go from wrestling in the ring to once again wrestling with my cancer. I had a post-op appointment with Dr. Barbara Ward to check my incisions from the lumpectomy. They needed to be healed enough for her to give the go-ahead to the oncologist to start my AC round of chemo. While Dr. Ward examined me, she shared that the tumor had been difficult to find during the operation because it was so far back against my chest wall. She was concerned that I would be sore for some time, since she had to do “a lot of digging” during the procedure.