Cancer 2.0 Chapter 1

A view that brings me calm
A view that brings me calm

Before I write in the present I want to look back to the first chapter of Cancer 2.0. As I approach the 6 month mark post surgery, it is still vivid in my mind and yet a world away. It was an unusually warm spring day on the moors. A hazy blue sky with sparkling rays shining on the ancient stone formations. We hiked passed the Dartmoor ponies, cute as pets with their shaggy manes and small stature, but wild. I felt strong and joyful as we trekked on a loose trail I’d been on 10 and 25 years before. 7yr old Bebe was a trooper for the first hour until she withered into whining. Against my better judgment I succumbed and hoisted her onto my back. For a few minutes we were a happy team singing along the path. Then I took one wrong step that sent a searing pain through my spine. I collapsed to the ground blinded by the pain. It felt like my back had snapped. After some deep breathing I had no choice but to pull it together to catch up to my husband and son. We found them at the stunning clear stream, and I lay down gingerly on the plank stone bridge trying to breathe away the pain. A babbling brook, ancient everything; it was so beautiful, that I just focused on enjoying the rest of the hike. (Crazy lady?) We rested and snacked gazing out at the rolling hills, dense forests, and magical stone circles. It is easy to picture the Druids celebrating the earth in this moody landscape. Our grand finale was skinny dipping in a bracingly cold pool along the Teign river. I thought perhaps it would shock my back back into place. For a moment it did, and our howling laughter distracted me. And a proper afternoon tea on the elegant patio of Gidleigh Park worked it’s own magic. A big pot of soothing fresh mint tea, crunchy on the outside, soft and warm on the inside scones with luscious clotted cream from happy Devon cows and summer sweet strawberry jam. Coupled with a giant ice pack and a horse size ibuprofen enjoying the bucolic scenery I was happy guest. (Could potentially stop here and jump around to another part of the story)

Fast forward through a numbing 4hr drive to friends near London, and my dear friend Simon introduced the magic of the electric stim machine. With that gummied to my back sending an electric current to angry muscles, a glass of rose, and energizing conversation with old friends in their gorgeous old farmhouse I navigated another day of back pain. Late for our plane at Heathrow we made an unfortunate sprint that got us to our seats as the doors were closing. Tears streamed down my face as I quietly bore that same searing pain I experienced on the trail. It was a long 11 hours. In a rush to get meds, I settled for a 20 minute appointment with a NP I didn’t know. She ignored my comment about a friend whose back pain was cancer in the spine, and instead suggested stretching. Frankly with such a specific event tied to the pain, it didn’t occur to me to push harder. I went to work with the electric stim and ibuprofen in hand, stretched in the supply closet, and cried myself to sleep. It was a busy time at work, at home, with the kids schools, and I was doing everything except listening to my body and my gut. My friend whose wife was fighting metastatic breast cancer in her spine approached me on our way out of work 10 days later,”I don’t want to scare you, but this is how Sarah’s cancer started. Have you called UCSF?”. Silly me, I had not, and it was an important heads up. Even speaking to my nurse at UCSF I was still fixated on assigning the pain to the fall on the moors. Being active meant it was tough to discern between muscle and bone pain. She switched me to naprosen from tramidol and hydrocodone as nothing was having any impact whatsoever, and said if there was no improvement in 10 days we’d do an MRI. I made it 2 more days before even I had to admit the pain was becoming debilitating. My stupidly high pain threshold hadn’t served me well. A blood test showed a potential problem in the bone, stomach or liver. I took this call on a walk, and therefore quite literally in stride on a Friday. An MRI was ordered for Tuesday evening. I was still bizarrely calm, a fabulous picture of denial. My brilliant friend Melissa who works for my oncologist and breast surgeon joined me for this, and we offset it with a margarita nearby for Cinco de Mayo. A mere 2 hrs later my husband’s phone rang at home. We’d just put the kids to bed and I was curled up with a book in our room. He called down from the top floor very calmly feigning a school related issue, but when I reached the room his face was ashen and he gently guided me toward the desk chair. The young doctor apologized for the late call, but announced all too quickly that it looked like the cancer was back. I slammed my hands on the desk as tears stung my eyes and flooded my cheeks and asked him to repeat himself.
How do you go to sleep after a call like this? Ativan. Long left in the cupboard but a welcome solution that night. I prayed he was wrong. Creighton wrote Melissa, and unbeknownst to me she immediately reached out to Dr Rugo and Dr Esserman to get the powerhouses of my medical machine in motion. I woke up scared, but decided it would be better to go to work than to wait shaking by the phone. But it was at the moment I pulled into my company’s garage that Dr Rugo pronounced this back pain to be “recurrent cancer”, my 2010 breast cancer metastasized to my bone. Only adrenaline carried me through May 6th. Creighton and Melissa dropped everything to join me for the live meeting with Rugo. She is a brilliant oncologist and doesn’t mince words. Underneath a tough and sometimes austere exterior is a caring heart and a doctor passionate about curing this evil disease. She teared up as she explained that they will do their best for me, but there is no cure. My body spasmed, and a primal cry came out as I broke into tears and attempted to process this horrific diagnosis. How can it be? Did I do something wrong? This CAN’T be. I need to be here for our kids. Creighton and I are supposed to grow old together. My heart was breaking, my world shattering, and it felt as if my chest was caving in on itself. Creighton, Melissa, and I wept together briefly, but then had to regroup to hear about an action plan. Insurance wouldn’t approve a petscan (unreal) so I had ct scans and mris to combine for a full picture. I ploughed through those while we mourned in the waiting rooms. You can really torture yourself when you put your mind on a what now fast forward. Talk about easy tears, cry on command. So ultimately as we worked through this sea of tears and this painful acceptance of the diagnosis, we made a kind of peace with it that allowed us to move forward. Creighton bravely called my parents and told our beautiful children (7 and 10). Former Marine Creighton told the kids we were bringing in the FBI, the CIA, and the artillery. And really we were. The world class team at UCSF are cancer detectives and ninjas. On Thursday May 8th we met with Dr Chou in neurology. I trusted him implicitly, and his calm demeanor put me at ease. Nevertheless, he informed us that the cancer had eaten a vertebrae and the bone was pressing on my spinal cord. If we did nothing, I would be paralyzed. More tears, but I immediately asked, “when can you operate?”…”We took the liberty of booking you in for Tuesday”. BOOM. Such is life. It changes on a dime. You can kick and scream and fight it, but when it changes course you have to go with the flow. May 6th diagnosis; May 12th I would get a titanium vertebrae and screws, fuse much of my spine, and sport an 18 inch scar. I worried a misstep would paralyze me in that time, but we tried to have a “normal” weekend and I went to see Will’s art night at school. I wanted to hold our kids every waking moment, but I couldn’t act desperate and put my fear on them. Monday I had my first Faslodex shot, an excellent hormone therapy that had just been approved and which shuts down the estrogen that is the fuel for my cancer. We watched “The Man Cold” video while I was injected in the flanks for several minutes. A good laugh takes away some of the sting. It was ok until 4pm when I was crawling on the floor crying from the pain that wrapped around my hips while my spine screamed again. Sleep helped, and I “prepped” for surgery with a lovely healthy family dinner followed by the most joyful rehearsal I’ve ever experienced with the band I’m in. With some dear friends and my family watching I sang as if it could be the last time savoring every moment and every sensation. I slept drug free in contented exhaustion ahead of the vital but terrifying surgery.

When I walked into my recovery room after a 9hr surgery and 3 excruciating, drugged out days in the ICU, I looked out onto a giant eucalyptus grove. I was so grateful to be alive minus the egg size tumor and despite the remaining lesions and giant wound. An owl flew by headed towards its cocktail hour hunt. I’m kooky about these things and viewed it as a very good sign. One of my worst days on this earth came day 2. I was in pain in every direction, mewing like an injured kitten, so broken that I couldn’t yell. I cried in frustration trying to text a message with god awful auto correct (can make this funny as needed) to some friends who I knew could get to me quickly, who could handle me this messy, and who could be heard by the hospital staff. Creighton had the kids, and it would not be healthy for this to be their first view of Mommy. Many friends had said ask for help, and this was a rock bottom moment where I needed to be held and pet and triaged. Beatie arrived with lotion and chocolate and her soothing presence. She is a gifted professional who counsels children with terminal cancer. Nothing phases her. She doesn’t believe in pathetic. Every version of you is ok. She massaged my hands, arms, feet and brought me off the ledge. When Melissa arrived, it brought me great joy to be able to introduce her to Beatie. Nothing like connecting great friends and launching new friendships. You don’t mess with Dr Paoloni. She knows cancer, and she knows how to get things done. She straightened up the mess that was my room, meds line up, and day, and brought it back on course. Sarah came in the evening with gorgeous fresh pressed juices and healing hands. I have loved her since the moment I walked into our shared room at Exeter 28 years ago, and she is just a magical, loving human. Thanks to this “triage” and conversations with my family I actually slept that night. Even with the nurses interruptions it was a series of deep, gratifying sleeps. And so I went from one of the worst days ever to a happy day. The highlight was when I was surrounded by Creighton, the kids with milkshakes in hand, a dear friend, and Mason and Jamie from the band playing their guitars and singing full volume for an hour. They made me sing, and I it was a glorious, we are so alive moment.

 

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