Had I Known

by Joan Lunden

  I was very nervous to make the ultimate decision about my treatment, but every woman going through this journey will find herself in that situation. Again and again, she will be making decisions like this one, hoping she makes the right one. It feels like an awful game of Russian roulette that you’re forced to play.

  One wrong choice, and BANG!

  The pressure is enormous.

  Can’t someone just tell me what to do?

  PLEASE! Tell me what to do!

  Why did I have to be in charge of these huge lifesaving decisions about something I knew so little about?

  The reality is, no one wants to make life-or-death choices out of fear or under duress. Although I didn’t like the way the situation made me feel, it definitely pushed me into becoming my own advocate really fast.

  At one point I realized that at each juncture you come to in the breast cancer journey, you just hope that you’re choosing the path of least regrets. I remember the first time I heard someone use that phrase. Ever since I announced that I have breast cancer, I’ve had a lot of touching conversations with other women battling the disease. During one chat with a woman debating whether she should take another round of chemo, I heard her say, “I’m so perplexed by everyone’s opinion, but my gut tells me to go with the path of least regrets.”

  Good phrase, I thought. I’ll remember that one.

  A mastectomy was never mentioned by any of my health care providers as an option for me. I clearly had a tumor only in my right breast. I didn’t have cancer in my left breast, and the course of treatment—a lumpectomy, chemo, and radiation—had a proven track record. While I will admit that the thought of cutting off my breasts and getting a brand-new set of beautiful boobies did cross my mind, in the end, it wasn’t a viable option for me. I do understand the hysteria, how women come to think of the breasts as their enemies and they just want to get them OFF. Having a mastectomy over breast conservation HAS NEVER SHOWN an increase in SURVIVAL. A mastectomy obviously reduces the risk of local regrowth in the breast, but no reduction in death rate. It is the molecular biology of the tumor and the possibility that it could have “shot off” circulating tumor cells into the blood or lymph that can take a woman’s life.

  A preventive mastectomy obviously reduces the risk of getting a SECOND PRIMARY breast cancer and would have nothing to do with enhancing the SURVIVAL from the first cancer.

  But in my case, there was no evidence to back up that decision. Besides that, you could cut off my breasts, but what about other cancer cells that might be somewhere else in my body?

  Once we made the decision to go with the newer chemotherapy regimen, my treatment began quickly. My first chemotherapy session was scheduled for later that week.

  In the meantime, my doctors suggested that I have a full-body PET scan to make sure the cancer hadn’t spread to any other part of my body. Dr. Oratz said she would hate to look back someday and say, “Why didn’t we check back then and find out there was something else to attack while we were taking this course of treatment?”

  I must admit, it did conjure up a concern that they may find something else wrong with me, but I couldn’t argue with the logic.

  While I’d never had one of these full-body scans, I’d heard about PET scans and even reported on them, so I was aware that the test would show everything that was wrong inside my body—head to toe. I’d had several MRIs when I’d broken my shoulder falling off my horse during a jumping exercise. Also, years earlier, I had herniated my C5/C6 disc doing aerial flying maneuvers in an F-16 for Good Morning America. While reporting on a piece about the U.S. Air Force’s elite flying brigade, the Thunderbirds, I was allowed to fly in the rear seat of an F-16 trainer jet doing aerial gymnastics. I was put through several grueling days of training before I was allowed to take to the air with the aerial gymnastic flying group to do loop da loops, fly upside down, and then the pièce de resistance: to be one of the very few civilians ever allowed to take nine G’s with the Thunderbirds. (G’s are the gravitational force you experience at very high speeds. Let’s just say that the only people who have ever experienced nine G’s and lived to talk about it are astronauts and pilots like the Thunderbirds.) The pilot I was flying with explained what we would do to create the g-force: He would bank the plane to start the gravitational force, and then I would pull back as hard as I could on the throttle to take us up to nine G’s. As we began the maneuver, the pilot banked the jet and then told me to put my right hand on the throttle; he would count me down. However, when he asked if my hand was positioned on the throttle, I looked down to be sure I was grabbing the correct lever and forgot to put my head back flat against the seat, as I had done over and over in training. So when I yanked back on the throttle and the F-16 bolted into super-speed, my head was thrown violently forward, chin flat against my chest, herniating my C5/C6 disc. It hurt terribly, but A) I didn’t want to look like a wimp in the eyes of the air force pilots; B) when would I ever get a chance to do this again? I couldn’t simply bail out of the exercise; and C) I had no idea how severely I had just injured myself, so I made light of it.

  This injury plagued me for years to come, until I finally had grueling spinal surgery to repair the damaged discs and then a fusion to secure the weakened discs to the adjoining healthy ones.

  So on the day of my PET scan, while I can’t say that I wasn’t a little nervous, it turned out that it’s really not difficult or scary. They wouldn’t let Lindsay come inside the building with me because she was pregnant, and it’s not safe for pregnant women to be close to radioactivity. Thankfully, Sarah had come in from Los Angeles and was able to accompany me to the appointment.

  I knew I didn’t have to worry about being confined to a small space, as I had been during my MRIs, because this would be an open PET scan. However, I am a bit of a needle weenie, so I was worried about having an IV in my arm or being given several shots.

  When I got to the facility, I was relieved when I was merely given some medication to drink. The technician said that the liquid would light up in my body like kryptonite in a Superman movie. Once I drank the liquid, I needed to sit and wait for about an hour to allow it to work its way through my system.

  The scanning rooms are filled with giant machines that are always freezing cold, because it’s good for the machines, but not so much fun for the humans. Thankfully, the techs have realized that most people are already scared half to death, and now they’re freezing their asses off! They quickly offered to cover me with a few blankets as they sent me into the tunnel and instructed me to just “follow the machine’s commands.”

  I kept my eyes closed throughout the entire PET scan. This is a technique I use whenever I think a test, procedure, or shot might hurt or really scares me. My basic theory is “If my eyes can’t see it, it’s not actually happening.”

  Hey, whatever works, right?

  Once I was lying still on the moving table and found myself inside the machine’s tunnel, I heard the first command. It was a rather sultry voice that said, “Take a deep breath.”

  Okay—I obeyed.

  Then the machine said, “Hold your breath” and once again, I submissively followed the direction I was given.

  Just when I thought I couldn’t hold my breath any longer, the automated stifling voice said, “Now breathe normally.”

  I let out an exhale of tremendous relief!

  It took only about half an hour for the entire test to be complete.

  When it was over, the nurse said Dr. Oratz had called and wanted me to come back to her office as soon as the PET scan was done. Lindsay met us there but was told she couldn’t sit in the same room with me because I was still so radioactive from the test. In fact, we were told that when one patient walked past the UN after her test, she was so radioactive that she set off their alarms and found herself surrounded by police and Homeland Security! Apparently, you can set off the alarm at TSA, Walmart, and lots of places after drinking the radioactive juice for a PET scan.

 
; Great! How can that be good for anyone?

  Lindsay went to a nearby coffee shop, called in to hear everything the doctor had to say, and took copious notes. For the rest of the day, wherever I had to go, Lindsay couldn’t follow, but lucky Sarah—she was plenty exposed. And I am happy to report that her third arm is doing just fine.

  When we got to Dr. Oratz’s office, I met with Beth Taubes, an oncology nurse who would be in charge of my chemotherapy treatments, so she could give me more information on what was about to happen and what I could possibly expect from chemo.

  Beth asked if I was the kind of person who felt nauseated often. I told her that I wasn’t; when I was pregnant with my daughters, I often felt nauseated but never threw up. She was hopeful that I might do better than others in this category.

  Then she asked if I got headaches very often. I said that I rarely did. Apparently, headaches are another common side effect of chemo, but since I wasn’t especially prone to getting them, we’d have to wait and see how I’d react.

  Then she wanted to know if I had trouble sleeping.

  Bingo.

  She had me on that one.

  I absolutely had sleep issues. For as long as I could recall, sleep had been my nemesis. My body clock had been off for years. I don’t know if you ever really recover from getting up at three A.M., day in and day out, for as long as I did while hosting GMA.

  We also talked about general lifestyle during chemo, including the importance of proper nutrition. Beth and Dr. Oratz both talked to me about the concepts of eating healthy and keeping a watchful eye on my nutrition. At first I thought I understood what they meant. After all, I had been a health advocate and had written several cookbooks on healthy living! In my mind, I had been exemplary in my food choices. But really, I knew the truth. With four kids under the age of eleven, is any mother truly perfect in her food choices all the time? I wanted to nod, as if to say, “Of course! Right! Naturally!”

  “No fast food. No KFC or pizza,” they said. “But of course, you know all of this. You’ve written books on it.”

  Wait a minute. Were they telling me I couldn’t eat cheeseburgers and pizza with my family?

  Were they nuts?

  I have young kids!

  Next, Beth laid out more details about the course of suggested therapy and how each drug would be administered. She said I may not feel so bad the day after the infusion, but it usually hit the patient hard on the third or fourth day after the treatment. She said they would give me meds to deal with nausea and suggested other meds to deal with potential digestive issues and possible sores in the mouth.

  What the hell?

  Ugh!

  I didn’t see that one coming!

  I was told I’d likely lose my hair fourteen to seventeen days after the first chemo treatment, maybe even within the first week, so I needed to get right over to the wig salon so I would be prepared when that happened.

  Dr. Oratz handed us a sheet of recommendations for where we could buy wigs in New York City. Lindsay made me an appointment at the first place, Bitz-n-Pieces, a salon that specializes in helping women going through cancer and other hair-loss issues. They were well equipped to make me comfortable with this highly anticipated transition.

  Bitz-n-Pieces is a private salon that is by-appointment-only. This ensures complete privacy for the customer, which I appreciated as I rode the elevator to my first appointment. While I watched the floors click by, I contemplated what would happen if someone inside recognized me and word got out that Joan Lunden has cancer. I envisioned the tabloid headline and cringed. I had been fodder so many times in the past, especially during my divorce. It had been years since my name had been linked to anything tabloid-worthy, and I’d rather enjoyed the anonymity my drama-free life had given my family and me. Still, in my gut, I knew what was possible, especially these days with cell phone cameras and instant access to the Web. Everyone has the potential to be a paparazzo these days for a price. All it takes is to be in the right place at the right time.

  Sarah and I walked into the wig salon (Lindsay still wasn’t allowed to be exposed to my kryptonite), and our eyes grew wide in utter shock and amazement. I looked right and then left at the vast array of hundreds of wigs, in every color and style you could imagine, on display.

  I’d never seen anything like it.

  It took my breath away.

  If I weren’t there for obvious reasons, I might have thought I’d hit the playroom jackpot. There had been many times throughout my career when I’d thought about wearing a wig—disguising myself so I could go out and be a regular gal on the town—especially when I was single and dating after my divorce.

  There was one night I did don a long red wig to attend an Alanis Morisette concert at Roseland in New York City without being recognized. I would have gotten away with it too, but the bouncer carded me at the bar! I’m not kidding, he really did, and if a guy cards you when you are forty-three years old, you seriously consider kissing him on the lips!

  Barry Hendrickson, the warm and ingratiating owner of the wig salon, greeted us at the door with a kind smile and an instant assurance that I was in superb hands. Without divulging names, Barry shared that he had provided wigs to many TV and film stars—some because of chemotherapy; some because they were playing a part on Broadway or in a movie that required them to look different; and some who just wanted a wig or two for fun.

  Oh, how I wished I had been in that last category!

  Barry ushered us into a small private room where we were introduced to my personal wig specialist, J.T. Sarah and I loved him from the moment he said hello. I’m not sure if he was being kind or trying to make me feel comfortable, but J.T was quick to share that he had always loved the Joan Lunden hairstyle and was ridiculously excited to “Joan Lunden my wig up.”

  I’ll admit I wasn’t sure I understood exactly what that meant, but hey, I was game. And, I will concede, flattered by his enthusiasm.

  With every wig J.T. handed me, he encouraged me to “Give this lady a whirl.” Before I knew it, I was actually having a good time. He made what could have been an incredibly torturous emotional experience hilariously fun and enjoyable. For a brief period of time, I’d forgotten why I was there.

  After trying on several “ladies” that were pretty close to my actual hairstyle, we came across one that was perfect. When he put it on my head, Sarah looked at me and said, “Mom, you look exactly like you.”

  “That’s the point!” J.T. said with a wide smile, knowing he had totally nailed it.

  After I tried on a dizzying number of looks, we all decided it would be best if I came back the next day with my hairstylist, Emir Pehilj. After all, Emir would be in charge of keeping my wigs looking fresh and styled so I could keep up my work schedule; he would need to be a part of this process.

  Jeff wanted to drive me into New York City and go to the second appointment with me at the wig salon. The idea of this made me really uncomfortable. While I didn’t mind Jeff accompanying me to any of my doctors’ appointments, I wasn’t sure I would feel comfortable trying on wigs in front of my husband. It wasn’t like we were setting ourselves up for some 50 Shades of Grey fantasy. In this case, it was the kind of bare I wasn’t yet ready to share. The thought made the reality of being bald that much more real and a hell of a lot more terrifying.

  Looking back, I think I was more scared about the thought of my husband seeing me bald than I was by any other side effect of the chemo. Despite my fumbling lame attempts to make excuses, Jeff insisted on taking me. He wanted to be by my side every step of the way. That’s the kind of man he is.

  Although I was reluctant, as soon as we got in the car, I felt so much better and safer with him next to me. Don’t get me wrong. I was still totally uncomfortable with the whole hair-loss thing, especially the thought of my husband seeing me soon with no hair. Oh God, what a thought—but it was going to happen, and I needed to deal with it.

  When we arrived at Bitz-n-Pieces the next day, the g
uys in the salon were so welcoming to Jeff and Emir. In the end, we all agreed on the same wig, one that looked exactly like my real hair. Jeff thought I looked completely like myself and that the wig was incredibly flattering. He said I had nothing to worry about and assured me that no one would even suspect I was wearing a wig unless I told them. J.T encouraged me to order a band that went around my head with hair attached only at the bottom so I could wear it under baseball hats or floppy sun hats when I took walks and worked out. He explained it would be much cooler on my head than a full wig during the upcoming summer months, especially in Maine, where I was still planning to be for June, July, and August.

  Well, the inevitable conversation of when to shave my head finally came up. J.T., Emir, and I talked about doing it at the end of the week, when we’d be together for my final wig fitting. The more the guys talked about how and when this unavoidable event would take place, the more I realized there was a good chance that I’d chicken out.

  I’ve done some pretty crazy things in my lifetime—adventurous challenges that would make most grown men shake in their boots, from climbing the Grand Tetons, to jumping out of planes with the Golden Knights, to training with the Navy SEALs—and yet I knew the only way I could go through with shaving my head was if I did it on my own terms. I had to just leap and not look back.

  So while they talked, I pretty much just listened and nodded, knowing damn well it would never happen the way they were planning it. This was now a covert mission that was probably best served alone.

  As we wrapped things up, J.T. recommended wearing my new wig over my regular hair, “giving the little lady a whirl” at least once before I needed to wear it. “You MUST wear the wig,” he said. “It’s good to put it on and go about your day so that you will see people don’t really notice a difference and won’t automatically think you are wearing a wig.” He felt it was important to help me have a sense of confidence and not feel “weird” when I had to begin wearing my new wig on a regular basis.