“I’m well beyond the conversation of being hopeful or not. Hope was more important in the beginning—it got me through the fear; it got me functioning, listening and learning. But, now, five years into living with recurrence, I’m more focused on asking ‘What’s the next thing?’ and researching therapies put before me to figure out if they are likely to help me. My friends and family have hope that the next thing will cure me. I don’t think it will cure me, but maybe it will give me more time. I’m a realist. I’m still a vibrant person.”
Lindsay McDonell, whom you may have met in another CancerChoices patient story, “Lindsay McDonell: Diagnostic Testing”, has been asking “What’s next?” and following the answers to that question many times over the last five years since finding out that her breast cancer recurred with widespread metastasisthe development of secondary malignant growths (tumors) at a separate location from a primary site of cancer; metastasis is an indication of advanced cancer. With tenacity and discernment, she has explored novel diagnostic and treatment approaches, finding those that make sense to her.
“No” or “We can’t do that” is not an acceptable response from her oncology team if fear, lack of knowledge, medical politics, or near-sightedness is the basis for the “no.” Lindsay absolves them of liability for her pushing the envelope and invites them to remain part of her conventional treatment team while she pursues evidence-based/informed novel, cutting-edge treatments—treatments that she credits with allowing her to be alive to tell her story and go on asking the question, “What next?”
I called Lindsay in February 2019 to see how she was doing. Since publishing her story in BCCTBeyond Conventional Cancer Therapies (predecessor website to CancerChoices)/CancerChoices in June 2018, I had heard that she’d run into a few complications from her low-dose immunotherapy: weird rashes that twice put her in the hospital, diabetes, hypothyroidism. She told me that these complications were worth the hassle of now needing drugs to manage them—after all, she was “dying” when she began treatments with Dr. Kleef in Austria [now in Budapest, Hungary] and then saw her tumors nearly vanish. But, even then, she knew this was not likely a cure, but rather an extension.
Lindsay’s sense was right—she told me that the cancer had popped up in her liver, her spine and her pelvis. Her BRCA status morphed from negative to positive. She was in tremendous pain. She couldn’t dwell too long on her suspicion of why the cancer recurred so quickly: “I was under a lot of stress including focusing my energy on caring for my husband who was diagnosed with cancer of his own; I hadn’t been back to Kleef’s clinic in eight months . . . For the first time ever I’m scared. I was a miracle once—to be a miracle twice, maybe not this time.”
“What next?” became an urgent “What now?”
She talked to other metastatic breast cancer warriors; she talked to Ralph Moss; she talked to her oncologist. She did her research using the thorough analytical discernment skills she learned in law school. Then she followed a ketogenic diet; she took off-label drugs based on the Care Oncology Clinic Protocol described by Jane McClelland.
She had other novel diagnostic tests such as PANTHER-chip and Tempus genomic sequencing. She found her way to interventional radiologist Dr. Jason Williams in Mexico City to receive a novel cryosurgery/immunotherapy procedure practiced by only a couple of physicians. Leave it to Lindsay to find someone of his calibre, a 2019 Vince Lombardi Cancer Foundation “Leaders for a Cure” award recipient. She was also turned on to Dr. Mark Rosenburg in Florida, who is working with her medical oncologist to integrate conventional treatment with repurposed off-label drugs. And, she is going back to Dr. Kleef’s clinic for a revised treatment plan.
Lindsay says she is tired of taking pills. She is tired of being tired—and she feels very fatigued. One of her drugs makes her throw up everyday, and they haven’t yet landed on something to prevent that. Yet through all this, Lindsay says “I’ve got to do what I’ve got to do. I’m not done with this life yet!”
Lindsay told me, “I want you to update my story: When BCCTBeyond Conventional Cancer Therapies (predecessor website to CancerChoices)/CancerChoices readers see this part of the story, they will think I’m crawling along the ground. I’m not. I’m still vibrant, like when you saw me last [which was enjoying a Celtic music concert]. So, even when things don’t sound very hopeful—know that I’m well beyond the conversation of hopeful or not. It’s the conversation of what’s next for today. “
Even when things don’t sound very hopeful—know that I’m well beyond the conversation of hopeful or not. It’s the conversation of what’s next for today.
Lindsay, who describes herself as “more of a rebel than a pleaser” is not only rebelling against the “you can’t do this” and finding her own way each day with the challenges of metastatic cancer. She is also asking “what matters now” and finding these answers:
“I just don’t think about it [cancer] all the time. I find joy where I can. My son is home this summer, and he and his girlfriend hang out a bit. That’s fun. I guess I focus on the things I really like—the people I really like. I also spend a lot of time by myself, trying to get my energy together. So I’ve become a bit reclusive—I’m not unhappy with that.”
“I’ve been doing some good vacation travel. I went to a resort in Mexico—it was quiet. I plan to do that several times a year.”
“I’m working with a ghost writer on a book. It’s about stories of real people living with cancer. I think it’s going to be an interesting and helpful book.” [Update: Lindsay’s book was published in September 2021.]
Lindsay’s words danced between advice for herself and what others in similar situations might want to consider:
“Find the things you need—pay attention to it—try to maximize it. You don’t have enough energy to waste.”
To physicians and practitioners she would nudge:
We don’t have control—if you didn’t find it out the first time, you will the second time!
“Be aware of how cavalier it may sound to us [patients] when you tell us to do this treatment, or follow this diet, or practice this technique . . . understand what you are asking of us and how difficult it may be to do or how misleading it may be to imply that this will give us control, this will prevent or stop the cancer.” She then muses: “I wish all doctors could go through what they ask patients to do. . . . I know of one who ‘always did the right thing’ and still got cancer and she was ready to give up way too early in the game. . . I had to tell her to get a hold of herself and realize she can do this!”
Before Lindsay had to interrupt our conversation to catch a cab, she said “We don’t have control—if you didn’t find it out the first time, you will the second time!”
I can only imagine her getting in the cab and the driver asking “Where to?” and laughing at what a loaded question that is for a person who travels in the land of heart and soul and who no longer has patience for inconveniences being misconstrued as problems.
This story is the second in a series.
Lindsay McDonell: Diagnostic Testing
Lindsay McDonell: Chemosensitivity Testing
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