To better understand the speed and trajectory of Tracey's cancer curveball, her treatment team wanted genetic testing to confirm the gene. The results were that she was BRCA1 positive. The pathology of her tumor was triple negative. There are many types of breast cancer. The most common are DCIS (stage 0, in the milk ducts, hasn't invaded any tissue), invasive breast cancer (what most of us think of as "breast cancer"), lobular breast cancer, and inflammatory breast cancer. Along with the type of cancer, pathologists determine the hormone receptivity, growth rate, and other characteristics of the tumor to guide the oncologists to the optimal treatment protocol.
My sister’s tumor was triple negative - meaning her cancer was negative for estrogen, progesterone and didn’t produce much or any of the HER2 protein. For the science or business oriented, Genetech developed a miracle drug, Herceptin, that is a low to no-side effect, effective treatment for HER2 positive tumors. My sister’s tumor, just like my mother’s was HER2 negative and hormone negative. It also was a fast growing tumor - meaning it was aggressive. Thankfully, my sister had detected her tumor when it was very small and was insistent that the surgeon remove it. Her surgeon recommended against the surgery because “it’s nothing”. My siste”My sister saved her life through self-advocacy.
My sister needed multiple surgeries because the first surgeon was too cavalier to ensure he got clear margins. She and Thom elected to do egg fertilization and freezing. Additionally, she tried to protect her fertility by taking Lupron and inducing a hopefully temporary menopause. She endured chemotherapy and radiation scheduled around her destination wedding in Cabo. She prayed that her body would be resilient enough (meaning her red and white blood counts were high enough for her every other week of chemo) to stay on schedule. My maternity leave provided considerable time for me to join Tracey at doctor's appointments and help her and her fiance as she struggled with the toxic side effects of her chemo. Her chemo was very toxic. The oncologist wanted to take advantage of her strength and overall health by being aggressive in treatment to achieve more than 5 years of success. He wanted a 70-year success. So did we.
My newborn son, Taylor, was just one month old when my sister had her first infusion on December 26. I texted her before bed, and she said she was alright. Early the following morning, my phone rang, and it was her fiance, Thom, asking if I could please come to their home immediately. Tracey had been violently ill all night, and Thom needed help. I had just fed my son, so I changed him, dressed, and told Neal I had to go to Tracey's. He asked when I would be back. I said I had no idea - he had our toddler, and I had the baby.
I entered their two-bedroom garden apartment and gave Thom a hug. My sister was nowhere to be found. We put Taylor, asleep in his car seat, on the floor of their master bedroom, and then Thom led me to their bathroom. My sister was lying on the floor with her head of wild curls splayed out next to the commode. There were couch pillows around her, but she was lying on the tiles in exhausted agony. Thom told me that she couldn't keep down water, so he couldn't get the antiemetic pills into her. I wonder who thought that the best option for someone vomiting was to ask them to swallow and keep down a pill. She couldn't. There was little I could do but pull back her hair, rub her back, and slowly try to sit her up. I told Thom to go - get a break, get some sleep. I'd help Tracey. She had been vomiting in the bathroom for 12 hours and wouldn't leave the bathroom floor. She was weak, dehydrated, disoriented, uncomfortable, angry, sad and exhausted. After an hour or so with no vomiting, I was able to move her slowly to her bed with a garbage pail at the ready. My weak, sick, and miserable bore little resemblance to the woman who confidently trained and completed a grueling IronMan race 4 months prior.
I felt terrible for my sister. I was sad that she was so sick. I desperately wanted to improve it but lacked the knowledge and mechanism to do anything more than console and comfort her. I was glad I could relieve Thom for a few hours. It's miserable to sit as someone you love is in anguish. I felt impotent against these side effects. And I was angry at her oncology team for being unavailable to help her on Saturday and Sunday. I thought they set her up, unintentionally but thoughtlessly, to be tortured for 48 hours. I tried to get Tracey to drink water without making her vomit. I think I attempted to get some soup into her. I rubbed her back softly when she'd let me touch her.
Sometime on Saturday, Thom returned, and he and Tracey made it through the next 36 hours. The on-call service had little to offer - and Thom had been calling since Friday night. They recommended she take some of the anti-nausea pills she had been prescribed, but she couldn't keep water down. The only non-oral antiemetic was marijuana, and our very conservative parents had offered to bring the pipe and weed (before it was legal to have it) from Florida when they flew out to see her before treatment started. She could get marijuana locally and did get a little relief from it. She was thoroughly depleted by the daunting possibility of three more rounds of this chemo regimen and four more of another one after that, with the understanding that the side effects were cumulative.
The weekend finally ended, and the infusion center was open Monday morning to see Tracey. I met Thom and Tracey at the infusion center on Monday at Thom's request. Tracey was there receiving IV fluids when I walked in with Taylor in his car seat. Tracey was in a semi-private room at the back of the infusion center. I sat down and adjusted Taylor when a nurse walked in and asked if that was a baby. Of course, he was a baby. She told me he had to leave immediately. That the infusion center could be toxic for him. Tracey started to cry because she was "too toxic" to be around the baby. I turned to Thom and said the baby has to leave - do you want to take him and go to work for a couple of hours, or do you want me to go? Thom was clear that he would take my car and my son - we had at least 2 hours before he'd be hungry. As he turned to leave with Taylor, Thom looked at me and said, "Make them fix her."
I paused. I didn't have confidence that the infusion nurses could fix her. My mother's chemo looked like Tracey's, except that we were kids, and we didn't see her on the bathroom floor. Thom and Tracey were in the batter's box for this curveball, and I was cheering/helping from the dugout. Thom was asking me to be the team manager temporarily and take control. Thom has an incredible way with people - he's warm and genuinely cares about others' well-being. I'm better described as a bull in a china shop. There was no doubt that Thom would not be comfortable with how much pressure I would apply to "make them fix her." I didn't want to jeopardize my budding relationship with my future brother-in-law. Balancing the rush to remove Taylor from the infusion center and the need not to abandon my whimpering sister, I asked Thom if he was asking me to take control right now. He said yes, I am. So I suggested he take Taylor and leave.
When Thom left the center, I calmed my sister as best I could. She needed to hear that the chemicals were dangerous to the baby - she was not. Tracey could hold the baby when we left because she would feel better. I think she was so tired and so emotional that hearing the baby couldn't be in the room triggered all the tears she'd been trying to resist for the last 48 hours of misery. I asked if I could leave her for a few minutes to talk with the nurses and get her better medicine. With her permission, I moved into action - the most comfortable I'd been in the previous three days.
I found the nurse who had been checking on Tracey’s IV fluids and asked to talk. This is pre-HIPAA for the legal/policy readership. I found her nurses and calmly shared that Zofran and that class of drugs was doing nothing for Tracey - and that oral antiemetics were not going to work given her reaction. When I said no one should ever go through what my sister just experienced - the misery, fear and the lack of access to her medical team - the nurse compassionately nodded. And then I asked that they administer Emend™ that day and every time they infuse my sister.
The nurse was confused. How did I know about Emend™? She asked if I knew it was a costly drug? I learned about Emend because I had led a venture that offered online access to oncology nurses to help navigate cancer treatment - and the nurses educated me about this miraculous new IV antiemetic that seemed to make chemotherapy much more tolerable. IV antiemetics - that makes sense! And regarding the cost, I told her that wasn't the question. Having definitively proven that Zofran, the standard of care, did bupkus for her, I was prepared to help Tracey and Thom fight their insurance company, if necessary. The nurse assessed that my sister was so impacted by her chemo that she needed IV fluids and ultimately agreed that oral antiemetics wasn't a good option for someone whose digestive tract is so sensitive to chemotherapy. I suspect the nurse didn't want to argue with a postpartum, informed, and insistent family member.
My sister was in no shape to advocate for herself at that moment. My (future) brother-in-law was traumatized and exhausted by the awful weekend of watching his beloved in such pain. I was the problem solver at that moment - I had the energy and access to the information. If I hadn't known about Emend, I would have asked the nurse to brainstorm other possibilities to help my sister feel better now and never have another weekend like the last. In any case, we would have wound up talking about IV antiemetics, although my insider knowledge got us there faster. Curveballs are hit by a solo batter, but many people help the batter prepare, train, and persevere. My sister and brother-in-law needed another person to buffer some of the worst initial moments of assessing the curveball. In many ways, the cancer diagnosis is the first curveball, and each phase of treatment brings new curveballs - the side-effect sinker, for example. Everyone needs a team to help assess, prepare, and cheer as you determine your approach and how you will hit the pitch.
Once Tracey was stabilized with IV fluids, my sister was as fixed as possible. Thom returned with Taylor and was able to take Tracey home.
Aprepitant (Emend) is an antiemetic. It blocks a chemical in the brain called substance P, which controls your vomiting reflex (thanks, GoodRX). Aprepitant delivers a three-day reprieve from nausea and vomiting from chemotherapy. After three days, most patients have little to no nausea. Emend made the chemo tolerable for my sister. I know that Tracey and Thom never had another night like that Friday. It's a blessing that my sister has no memory of that night or that weekend. Thom and I will never forget it and the miracle of Emend.
My sister lost her stunning curls (temporarily) due to chemo. She temporarily developed neuropathy in her hands (tingles). She lost weight she couldn't afford to lose. She and her fiance (now husband) figured out how to manage the side effects over time, but they were mostly on their own to do that. Research at the time indicated that oncologists vastly underestimated the intensity and duration of side effects. For my incredibly fit and healthy sister, those side effects were INTENSE and debilitating - and clearly avoidable. None of us knew what to advocate for in advance, and I wish we had.
Tracey's chemo was different from my mother's, even though their tumors were very similar. Tracey was treated with high-dose Adriamycin Cisplatin (AC aka Red Devil) because, in 2000, oncologists believed that it was the most effective against triple-negative breast cancer. The red devil is so toxic that your heart can only endure four treatments in a lifetime. My sister got her four treatments every two weeks - high-dose. Twenty years earlier, my mother was infused with a different cocktail called Five FU via IV every three weeks, and she took Methotrexate (a steroid), Cytoxin (chemo), and Prednisone (a steroid) orally every day. Oncology science continues to evolve. Thankfully, research around the most effective and least toxic treatments continues to receive considerable investment and attention. Part of creating an approach to the curveball is pausing to ask questions about treatment alternatives, efficacy, and side effect management if your oncology team doesn't proactively offer that information.
Tracey and Thom had their dream destination wedding on February 14, 2004. The wedding in Cabo San Lucas was a fantastic celebration of life, strength, and love. The women wore wigs, and the men shaved their heads in solidarity with the bride and groom. They were married on the beach. My sister was radiant. For the weekend, we stepped off the cancer roller coaster for the joyous carousel of love, family, and friends. All the guests were pre-advised that this was a happy event and that the cancer discussion was unwelcome.
After her wedding, she started a course of Taxol, which was much less toxic. The lupron was successful, and Tracey was able to conceive naturally a year after her treatment. After having her two children, Tracey elected to have bilateral mastectomies and reconstruction because she was advised that if she had a recurrence, her treatment options were less effective than Red Devil she'd already maxed out. Her prophylactic mastectomies started a conversation with my husband as well as my parents about my risk and having preventive mastectomies - something I considered and rejected for almost twenty years because I didn't want to have major surgery for a disease that I thought could be detected early and treated successfully if I developed cancer.
Continue the story…
