Had I Known

by Joan Lunden

  One thing you might notice right away when you start chemotherapy is that it feels like some alien creature has come in and taken over operation of your digestive tract and you are just along for the ride. If you throw all caution to the wind and go for that fast-food burger, you’d better pray that you can stay near a toilet. The further you get into your chemotherapy, the more your mantra becomes “Eat, Pray, Poop.” Well, if you pray hard enough, you will poop . . . eventually.

  TMI?

  Sorry.

  As a result, you quickly learn that watching what you eat can help stave off some of the crummy side effects that chemo is ready to throw at you.

  Don’t you just love this conversation?

  Yeah, I know, it’s a shitty topic. But someone has to talk about it.

  It was explained to me that the chemo not only kills off the bad cells, the cancer cells, it also kills off lots of your good cells. Chemo tends to go to fast-growing cells, including hair follicles and those inside your mouth, which causes the mouth sores; the ones inside your digestive tract (thus the digestive problems); and the ones on your skin—consequently, your skin can look dry and almost paperlike. And your skin feels different to the touch, since there’s not a hair on your body!

  Seriously!

  Imagine how your arm would feel with no hair on it.

  When you rub your hand up your arm, it’s as soft as a baby’s tushie!

  While I thought I had a grasp on healthy eating and nutrition, I had no clue what I should be eating for my health during treatment. I asked my assistant Elaine to look into several nutritionists who had been recommended to me since my diagnosis. All of them were well known in their field, though some were more recognized and successful than others. She called the various offices to find out how they would work with me and what their rates were, whether they accepted insurance, and how often we would need to meet. After all, I was in Maine and they were scattered throughout the country.

  The week before I was diagnosed with cancer, I had been at a hair salon in Connecticut and met a PR rep for a physician and clinical nutritionist from Westport named Dr. Robert Zembroski, who specialized in advising patients going through chemotherapy or autoimmune problems. The publicist told me that Dr. Zembroski had written a book about his own cancer experience called Rebuild with Dr. Z’s Body Composition Diet. The publicist said that she would love for me to meet him. Keep in mind, this was before I knew that I had cancer. I told her that I would be making an appearance later in the week at our local library to interview Adam Braun, founder of Pencils of Promise, a for-purpose organization that builds schools, trains teachers, and funds scholarships in the developing world. He had just published his first book, Promise of a Pencil. Adam and his siblings had gone to school with my daughters, and he had asked me to moderate the event for him.

  Well, the universe has a way of delivering what we need exactly when we need it, because Dr. Zembroski turned up that night. He sat in the front row and introduced himself after the presentation and handed me a copy of his book. Once I went public with my diagnosis, he made it a point to stay in touch, graciously offering to work with me and share his incredible knowledge of nutrition throughout my cancer battle.

  Once I was diagnosed I read his book and learned so much. He rebuilt himself after dealing with his own diagnosis and journey through cancer with non-Hodgkins lymphoma. He is considered a miracle cancer survivor because of the approach that he took in his own battle.

  Dr. Z draws on the latest research and over twenty-one years of working with patients, so when the time came to find the right doctor to add to my team, I knew in my gut that Dr. Z was the guy for me.

  I scheduled my first call with him right after the holiday weekend with my family. Not only was his office close to my home in Connecticut, it turned out that he had roots in Maine, too. His brother is a doctor in Augusta, and they share a number of patients, so Dr. Z visits Maine with some regularity. I often look for signs that I’ve made the right decision, so from my point of view, this was meant to be!

  The first thing Dr. Z asked me in our initial call was whether or not I’d gotten a port. A port is a small medical appliance installed beneath the skin, usually in the upper chest area, just below the clavicle or collarbone. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical needle stick.

  Dr. Z warned me that I could ruin the veins in my arms if I continued with the IVs. To be candid, as much as I hated the IVs, I had been reluctant to do the port procedure, as it required minor surgery. Besides, none of my doctors had encouraged me to get one, so I didn’t see the rush or need to have the surgery until Dr. Z explained to me that: “once the port is in, they simply disinfect the skin and put the needle into the port. The tube goes under the skin and into a major artery in your neck. When chemo drugs go into the port and thus into this major artery, they go directly to the heart and are immediately dispersed to your entire bloodstream. It’s much more efficient than going in through veins in the arms. Call your doctors tomorrow morning and schedule an appointment to get a port ASAP.”

  He wanted me to know there are tactics to make it through chemo in the best way possible and, maybe even more important, assure that it doesn’t do any permanent damage to your body. He warned me that the strong chemo drugs can cause damage to the kidneys.

  Our conversation turned to nutrition. He explained that chemo is cumulative. So often people think, I’m doing great with this! I’ll be fine. But as anemia builds and your white blood cell count drops, you start to feel worse.

  He was quick to say he didn’t want to scare me off, but what he was about to propose would feel extreme. He was going to basically take me off sugar, wheat, and dairy.

  Whoa.

  First, that wasn’t exactly what I had been hearing from my oncologist.

  Second, what was I going to eat?

  Dr. Z explained that I was going to start a clean eating plan. In the simplest of terms, clean eating is about eating whole foods or “real” foods—those that are un- or minimally processed, refined, and handled, making them as close to their natural form as possible.

  Okay. I could do that. Instead of scaring me, it fueled me to clean out my food pantry and fridge and throw away tons of food filled with wheat, sugar, and dairy. It felt good, cleansing, like I was once again gearing up and finding my Warrior Mode.

  Too bad we have to get hit in the head with a two-by-four to really be serious about our health. But I had an amazing incentive to do it right this time. Although I didn’t know it, I had been paying lip service to label-reading and eating clean for way too long. Now the time to follow through was here—BIG-TIME!

  This was my second chance.

  I doubted there would be a third.

  Okay, so we were going to attack these cancer cells with FOOD. Dr. Z assured me that some of the best medicines you can find to fight cancer are the right foods.

  Absolutely NO WHEAT, NO DAIRY, AND NO SUGAR.

  That meant no whole-wheat anything and no or minimal grains.

  He suggested substituting black rice or brown rice. Brown rice pasta, brown rice breads: two things I had never tried.

  He also warned me to stay away from fatty red meats and all things fried. My best bet was to stick with lean chicken and broiled fish. I could eat all flat fishes as long as they were cooked well. Oh, and in case I was wondering, sushi was completely off the menu.

  Wow!

  That was our starter conversation.

  Dr. Z said he was coming to Maine in a few days and would love to have another session.

  It would take me a few days to wrap my head around everything he had thrown at me.

  I told him I was completely committed and wanted to take this new clean-eating plan to the next level. I was ready to do whatever was necessary to aid and abet my health.

  When he c
ame to Maine, Dr. Z and I decided to make a trip to the grocery store together to do my very first official “no wheat, no dairy, no sugar” food shop. What an eye-opening experience that was! I felt like an alien who had landed in the middle of Whole Foods for the first time.

  While I had been to Whole Foods many times in the past, this was a totally different experience. Dr. Z walked me up and down the aisles, showing me foods and explaining ingredients I never knew existed. I wrote my first cookbook in 1994, Joan Lunden’s Healthy Cooking, and I’d jokingly asked, “What is quinoa, anyway?” Now here I was, buying it! (I still don’t know exactly what it is or where it comes from, but it’s pretty tasty.)

  When we finished shopping, I came home and emptied our food pantry of all of the Tostitos and other chips, cookies, and crackers that didn’t come home from my “healthy shop.” I threw away all of the bread in the house, even the whole-wheat English muffins I once held on to as my healthy breakfast choice, and everything that didn’t fall under my new guidelines to healthy eating but might have still tempted me. I wasn’t taking any chances with my eating or my health going forward.

  I was the most concerned that I’d miss bread and my morning English muffins; however, I acquired a taste for brown rice bread with a smear of Tofutti cream cheese and a tiny bit of raspberry preserves on top. Surprisingly, I found I didn’t miss any of the real things a bit—especially the cream cheese.

  I found the transition from cow’s milk to almond milk very easy—frankly, I can’t even tell the difference. I also tried rice milk. I liked them both, though rice milk tended to be a little watery for my taste and wasn’t as good with steel-cut oats or in coffee. So for my coffee, I started using a coconut-milk creamer, which is a totally delicious substitute for regular milk.

  Instead of regular pasta, I substituted brown rice pasta, which took a little getting used to, and chose black bean chips to dip into my beloved salsa and guacamole. After my semester at sea, I spent two years of college studying in Mexico City, which left me with a love of the food, that’s for sure. I was happy to find a satisfying substitute chip so I didn’t have to give up one of my favorite snacks. Although I am more of a salt than a sugar lover, I’ll now occasionally indulge in Tofutti ice cream bars, which aren’t quite as delicious as the real deal, but they did satisfy my craving for something sweet and cool for dessert whenever I got the urge, which wasn’t often.

  What I really discovered during my first shopping trip with Dr. Z was that there are a lot of good substitutes and options, but it would take some time and trial and error to find the ones that worked for me. I also realized, perhaps for the first time, that while I’d thought I had a handle on what eating healthy was all about, I had been fooling myself for years.

  I was so consumed with counting calories and watching my carb intake that I never paid attention to all the other crap I was ingesting along the way. I never spent a moment reading the labels on the food I was eating or feeding to my family. When I began to take notice, it scared me to think we were eating chemicals with names I couldn’t pronounce. Surely this wasn’t the way our bodies were meant to operate. In a way, I felt so fooled. If something said “healthy” on the label, I bought in to it—hook, line, and sinker. I never bothered to read the back of the box, jar, or can to check out what was inside.

  This was an epiphany of colossal proportion.

  An awakening I hadn’t seen coming.

  I knew this was the beginning of a different journey for me—one I was committed to in a whole new way, from a completely different point of view.

  Why?

  While I always knew my health depended on my nutrition, this time my life was at stake.

  Oh yeah.

  That’ll rattle your chain.

  If getting cancer isn’t a good enough reason to get hold of your eating and nutrition, I don’t know that anything will get you there.

  I had always been a woman who thought I walked my talk.

  I put up a good front.

  I talked about it—even wrote about it.

  And now I had to change my path.

  Big-time.

  CHAPTER 14

  Port of Entry

  We never hid anything from the kids. I feel whole again. I really do. I told them Mommy’s boo-boo is better now.

  WANDA SYKES

  Actress, comedian, diagnosed with breast cancer in 2011

  After talking to Dr. Z and doing quite a bit of research, I decided that getting a port made a lot of sense. I will confess that I grappled with the idea of putting myself through a medical procedure—did I really need to go into a hospital and do this?—but after weighing out the pain I’d endured during my first two chemo treatments, then reviewing a lot of documentation from other patients who had written to me about their own experiences, coupled with what Dr. Z told me, I felt like it was a no-brainer. I couldn’t imagine why I would choose to suffer more than necessary, let alone create unintentional long-term damage to my veins. In the scheme of things, I was hoping my chemo treatments would be a blip on the screen. I didn’t want to live with the fallout of those twelve sessions longer than I had to.

  It was my body, my decision.

  As I was learning, this journey was all about choosing what was right and best for me.

  Give me the port!

  Jeff drove me to the Maine Medical Center, where Dr. Chris Baker performed the one-hour surgical procedure to implant a power port in my chest. I was awake, in what’s called a “conscious sedation” state. I had an issue with the “conscious” part of that description at first, but it’s not as bad as it sounds. The anesthesiologist said, “You will be awake and you will hear us, but you totally won’t care.”

  And he was absolutely right.

  Members of the interventional radiology team at Maine Medical chitchatted with me throughout the procedure as Dr. Baker made a small incision in my chest using images from the huge MRI machine that hovered over my torso. He inserted a small tube into my major artery. A few inches below that, he made another incision and slipped the small port under my skin. Once the two were hooked together, Dr. Baker stitched me up, and I was good to go.

  When the procedure was over, they left a needle in my chest for my next chemo treatment, which was scheduled for the following morning.

  While that is quite normal, the idea of rolling over in bed with the needle sticking out of me made me a little queasy. I was very groggy and sore, leaving the hospital, but so happy to have it over with, knowing chemo would be a little easier going forward.

  The next morning, my mother-in-law took me for my chemo treatment. It was the first alone time I’d spent with Janey since my diagnosis. Janey was all too familiar with the breast cancer journey; many years ago, she’d had a lumpectomy and ten weeks of radiation. All of the women in Janey’s family were on high alert, as her elderly mother had also had breast cancer. Knowing what Janey and her family had been through, I was well aware of how fragile life can be and how quickly things can change.

  Buddha said, “The trouble is, you think you have time.”

  There is a reason so many people buy in to the Buddhist wisdom.

  We all think we have time.

  But do we . . . really?

  I know I’m not supposed to go there, but to never ponder this question, especially now, would be denying that I am human.

  One day after I wrote a blog entry, I received a message via my website that really touched my heart. It also really got me thinking.

  I am glad that you are doing well with your treatment; you just keep fighting. My daughter was diagnosed with triple negative breast cancer while pregnant, she delivered her baby, a miracle, and she continued to fight for eleven months. Unfortunately she lost her battle this July, leaving a husband and two little ones. Her husband set up a fund in her name to help support TNBC research and to help children that have lost a parent to this disease.

  —MM

  After reading this, I sat for a moment or two, complete
ly stunned, frozen in my seat. I read the message a second time, and afterward I cried. For the first time since being diagnosed, I thought about the reality that I, too, could die from this disease.

  Why hadn’t I honestly considered that consequence before?

  I guess it’s because I’m a positive thinker and a natural-born fighter who doesn’t consider losing a possibility.

  And I still believe that in my heart of hearts.

  There wasn’t one ounce of me that didn’t believe in my ability to stay strong and fight, couple that with the amazing modern medicine available to us, and beat my disease.

  But . . . it is cancer.

  What if it spread and got the best of me?

  Didn’t I have to at least give that outcome some thought?

  Didn’t I have to consider the “what if”?

  It was a totally scary thought.

  Not so much about what happened to those of us with cancer—I mean, in the end, did that matter?

  We’d be dead.

  It was really about those we leave behind.

  In my case, that’s Max, Kate, Kim, and Jack, who are still so young.

  And what would Jeff do?

  Yes, he is the most capable, organized individual I know, but come on. We are so connected, the two of us, and we live our lives as a family unit—planning and enjoying every minute of it, every different phase of it.

  We savor it.

  And what about my older girls, who are just beginning their adult lives and will have so much to share and so many questions to ask me?

  Lindsay was having her first baby with Evan, and I was so excited for her. The idea of them not having me for these monumental life experiences was more than I could bear to think about.