CHAPTER 1
A LITTLE BUMP
I am really late to my kids' swim meet. It is late July, and these are the semifinals, called Southern Division in our area. The place is packed and loud and chaotic, with swimmers hustling to the blocks and parents shouting from the sidelines. I find my friends on the metal stands the pool has brought in for the event and slip in next to my friend Ashley, who has graciously saved me a seat in prime viewing real estate. She is one of the few people with whom I've shared what has been going on. Another friend turns and asks why I'm so late. "I had a doctor's appointment," I reply. She asks jokingly, "What, are you sick?" smiling, knowing this is highly unlikely. I'm the healthiest person she knows — a health coach, in great shape, and drinking my green smoothies every day. I say, "I might be, but I don't want to talk about it," tears welling in my eyes. I look away and try to distract myself with the meet. She texts me "I'm sorry" from two seats away. I am sorry too. The whole thing is so totally, completely unbelievable.
That day I had just come from the ear, nose and throat doctor. He had said that the little bump on the side of my neck was probably lymphoma. The whole drive to the meet, I had been busy convincing myself that he didn't know what he was talking about. That was impossible. I was a health coach! I had just had a checkup and had perfect cholesterol numbers and everything! Little did I know that not only was he right that it was lymphoma but I would find out a year later that I also had breast cancer at the same time. Yes, two separate and distinct cancers, and both aggressive, rare, and hard to treat, at the same time.
It all started in June of 2013. I was having lunch with girlfriends when I noticed a little bump on the side of my neck. It was my friend Jana's birthday, and four of us were at a local bar/restaurant celebrating. As the lunch was winding down, and Ashley had run off back to work, I just happened to put my hand right on the little pebble-sized bump on the side of my neck while I was talking. It was like my body was telling me, "Hey, check this out. Something's not right here." I said to my friends Jana and Paula, who were sitting across the table, "This is weird. I have a bump on my neck." A few days later, I showed it to my chiropractor, and he said it was a swollen lymph node and suggested massaging it to clear whatever it was trying to detox. I did that for a week, but nothing changed. When I got two more bumps after a bit-too-boozy Fourth of July, I called my naturopathic doctor. When I confessed that my Google search of "lump on neck" came up with lymphoma, she said she was sure it was easily explained, a viral or fungal infection perhaps. "But maybe we should get a biopsy to rule out the worst scenario just so you can stop worrying about it. I'll consult with an oncologist colleague." Next thing I knew, my life was upside down.
Two words you never want to hear from any doctor: "biopsy" and "oncologist." I tried so hard not to be scared. But this was very, very scary. The larger of the two that had popped up after the Fourth of July was chosen for the biopsy. This was my first-ever surgery and first-ever general anesthesia. I was so scared I cried at the hospital. Is there anything not scary about anesthesia? Your life is completely in someone else's hands (the '70s movie Coma had made a big impression on me). My surgeon and anesthesiologist thankfully did a beautiful job and the surgeon even managed to put the incision in one of the already existing lines in my neck. At the follow-up appointment for the surgery, I asked him how noticeable the scar would be. He said, "That's the least of your concerns." As it turns out, for a roughly three-inch scar, it's not nearly as noticeable as it could have been, and my vanity thanks him for that.
Off the biopsy went to the lab, and let me tell you, the two days it takes to get the results back are the longest two days of your life. The pathology came back, and the lymphoma was confirmed. Turns out that worst-case scenario that my naturopath had been reassuring me wasn't it, really was it. Only later I would find out it was worse than the worst-case scenario. The results from the lymph node in my neck showed B-cell non-Hodgkins lymphoma. My oncologist at first told me this "wasn't doom and gloom." It was easily treatable, and if you were going to get cancer, this was a good one to get. Even though I couldn't believe he would say such a thing, I was actually encouraged by this, while I let the shock sink in. He also said they would next need to do a bone marrow biopsy to see how pervasive the cancer was. Lymphoma is a blood disease, and blood is created in the bone marrow. This was not another surgery; it was a rather simple procedure they did right in one of the doctor's offices.
So an appointment for a bone marrow biopsy was made for the next day. All of these appointments happened within days of that day at the swim meet when I was barely keeping it together emotionally.
It was a whirlwind of doctor's appointments, which in a way helped distract me from the fear. There were places to go and people to see. However, the urgency with which they treated the situation was also scary. To me, their availability communicated a seriousness without actually using words. My case was clearly a priority. I mean, when do you ever hear from a doctor that they can get you later that same day?
The bone marrow biopsy needed no anesthesia, thankfully, just numbing at the site, and was performed in one of the oncologist's rooms with just him and one nurse. I was all numbed up, and all was going well until the doctor started turning the screw-like needle into my lower back at the hip bone to get a sample of the marrow. He had to push hard, and it felt kind of like (only opposite to) having a tooth pulled. It was at this crucial moment that my husband, who had been holding my hand for moral support and facing the doctor on the other side of the table, actually passed out in the middle of the procedure. "Man down!" the doctor shouts. (Seriously! I am not making this up.) "Get some nurses in here!" All attention turned to Ted, my husband. Even the doctor was telling them how to position him flat on the floor, not upright. I'm thinking, Uh, could we finish this up? I've got a drill needle inside my hip bone over here. It felt like I was in a Woody Allen movie. I actually started laughing. The down side was that the doctor said that in all the activity he hadn't gotten a good sample and would have to go in again. My husband won't be living that one down any time soon.
Again, I was waiting for biopsy results. The next day, the pathology of the bone marrow showed that not only was it most certainly lymphoma, it was mantle cell non-Hodgkins lymphoma, a rare type, and with the rate of onset, seemingly fast growing and aggressive. The look on my oncologist's face as he shared this bit of news was unsettling. The previous "this is not doom and gloom" encouragement was gone. This was serious.
The results also showed that this was a blood cancer that unfortunately had taken over 40 percent of my bone marrow. A PET scan three days later showed that no other organs were affected, thankfully, but once cancer is in your bone marrow, you are at stage 4. The odds were not in my favor.
The thing about having a blood cancer in your bone marrow (where all blood cells are born) is that you can't do surgery to get rid of it. And unlike what some people may have you believe, with mantle cell, you can't just eat turkey tail mushrooms or cannabis oil or go vegan to cure this one. Being the natural holistic health coach that I am, believe me, I would much rather have used a natural remedy and not done chemo. I believe those remedies can work on some cancers and have worked for some people. But with this kind of stage 4 aggressive mantle cell cancer, the kind that had invaded my blood and bone marrow in a matter of weeks, those natural remedies would not have been strong enough to save my life. It would have been like throwing gravel at a bear — not powerful enough to stop it. Even my naturopathic doctor said that I would have to hit the mantle cell hard and fast.
CHAPTER 2
FEAR
Lots of books are written on fear — overcoming it or not letting it control you — and, to tell you the truth, I have read none of them. I am not saying that I haven't been afraid in my life, but, to be honest, I've had it pretty good. I haven't had any traumatic events — no serious emergency room visits, no life-threatening situations. Until this.
The concept that I may not survive this I could. Not. Be. With. It terrified me. I stuffed that fear way down. I basically went straight into denial that the biopsy results had indicated anything of the sort. I had switched to a superstar, famous, specialist in mantle cell lymphoma, and his team was running more tests. Maybe things were inconclusive. Unfortunately, in the end, they only confirmed what the first round had shown.
And with that confirmation, I lost the cap I had on my emotions. They all came tumbling out. The fear, the anger, the tears. Lots and lots of tears. Fear is an emotion that will not be suppressed for long. It demands to be felt. When you feel it, experience it, it subsides. Bravery can then step in. I rode the fear — bravery rollercoaster all throughout this experience. It never really went away. But it became manageable.
When the diagnosis came back and I fell apart, I didn't want to scare my children so I managed to hold it together and cry when they weren't around. And I wondered how could this possibly be happening? I didn't want to die. At least, not any time soon. I had always assumed I would live into my nineties like the women typically have done in my family.
I had to tell the kids. I'm not sure if this was the right thing to do, but when I told them that I had cancer, it was called mantle cell lymphoma, and that I had the best doctor, I was going to get treatment, and it would all be over by Christmas. I told them that I wasn't going to die. I told them that the treatment would be rough, but I was strong, and it would all be okay in the end. Neither of them said much but seemed reassured by my story. My daughter cried a little, probably a little more in tune with my own fear. The treatment was going to start the day after their first day of school. Each was starting in a new school that year (high school and middle school), and to this day, I feel terrible that I wasn't more available for that transition. But I couldn't. My treatment would require five-day stays in the hospital under continuous chemotherapy.
CHAPTER 3
THE PROTOCOL
With the news that I had a rare and hard to treat form of non-Hodgkins lymphoma, my husband asked my oncologist at the time who the best doctor to treat mantle cell was. He kindly referred us to a world-renowned oncologist at Seattle Cancer Care Alliance, a facility people fly in from all over the world to go to for this kind of cancer, and, as luck would have it, was in Seattle, where we live. With some pestering, we got an appointment with this superstar doctor and switched my care to him.
At our first appointment, he told me that there is no cure for mantle cell and that permanent remission was my best hope. I will never forget this appointment. He talked quickly and in a friendly but extremely knowledgeable way about B cells and T cells, the immune system, and the lymph system. He told me how with me one B cell at some point had split funny and the #14 chromosome got stuck on the #11 chromosome, and that there's a part of the 11 on the 14. By the time they can detect mantle cell, it has usually spread throughout the lymph system and into the bone marrow and organs and is usually at stage 4 before detected. It is a rare lymphoma, found in only 6 percent of the lymphomas, and is more common in men over sixty-five. That certainly didn't describe me. He then presented me with three treatment options, each harsher than the previous one. They all included induction chemotherapy to get to remission for phase 1 with differing phase 2 options. He explained that they would all get me to remission, and the difference was if they would keep me in remission.
Option 1: Retuxan and Bendamustine, a mild regimen of a few hours of chemo each time, and I wouldn't even lose my hair.
Option 2: R-CHOP (acronym for a particular chemical cocktail), more toxic than Retuxan/Bendamustine. But with nearly all patients in this option and the Retuxan/Bendamustine option, the disease will come back within three to five years without a postremission management plan.
Option 3: Hyper-CVAD, the most difficult regimen, requiring four hospital stays, each of five days in length on continuous drip, with twenty-one days between treatments. This was harsh but this option offered complete remissions in 90 percent of the patients.
Next in the discussion came my options for the postremission management. This was all written on a white board in two columns, and I felt like I could pick and choose an induction chemotherapy plan from column A with a postremission plan from column B. Kind of like the chemical version of lunch specials at some kind of chemo restaurant. "I would like toxic chemical combo platter number 1 with a number 2 side of indefinite chemo, please."
Post Remission Management:
Option 1: No treatment until the disease comes back (not recommended).
Option 2: Maintenance chemo of Retuxan, where I would take a dose of this drug every three months indefinitely.
Option 3: An autologous stem cell transplant. This is controversial, but he felt that it gave me the highest chance of remission for fifteen to twenty years. But the stem cell transplant had to be done right after the induction chemo for the best results.
After a few sleepless nights, some soul searching, and advice from friends and family, I chose option 3 in both cases, which on the chemo restaurant menu was the harsher than hell chemo with a stem cell transplant chaser. This would bring me to remission and give me a clean slate with the transplant. What I liked best was it would be bringing the big guns to the fight (even though I abhor guns and fighting) and gave me the best chance of meeting my grandchildren.
CHAPTER 4
THE TREATMENT
Within a week, on September 5, the day after both my kids started at new schools, I checked into the UW Medical Center Hospital seventh-floor chemo ward to start the hyper-CVAD chemo protocol, which, as I mentioned earlier, required four five-day hospital stays on a twenty-one-day cycle. I had only ever stayed the night in a hospital when my two babies were born. And that was a posh brand new maternity ward. This was, well, not that. This was beeping chemo machines all night and staff waking me up at all hours to take my vitals. I hated it. It was impossible to get any sleep, and don't get me started on the food. I'm a health coach foodie who loves cooking tasty whole food nutrient-dense meals. So the hamburgers and milkshakes (certainly not) and farmed fish with boring steamed vegetables (not much better) were not anything I was going to eat.
Luckily, my friends saved me. My friend Heidi brought me a smoothie most mornings for breakfast, and if she didn't bring one, she arranged for another friend to deliver. She brought me funny movies to watch to keep my spirits up, and I had a lot of visitors to make the time pass. It was hard to be away from my kids and husband. Ted came to visit me every day, but the kids only came once each hospital stay. It was not easy for them to see me that way. We tried to make it fun by playing Scrabble, but I could tell it was hard on them. So Ted and I decided to limit that part of it for the kids. I tried to talk to them about how they were doing and how this was affecting them, but they were twelve and fourteen and not very adept at expressing their emotions. "It's okay" was about as much as I could get out of them. When I asked my son if he was worried, he asked, "Should I be?" I said, "No, everything's going to be okay." It was what I wanted them to believe. And who knew really?
The days in the hospital were spent reading and surfing the Internet for funny videos; YouTube snippets of Jimmy Fallon and Ellen DeGeneres sustained me. I realized I couldn't read books while in the hospital not only because of the steady stream of attending nurses but my attention couldn't be sustained that long. I could only focus on magazines, so friends brought all varieties from Vanity Fair and Vogue to People.
