When I look at where she is today, I am amazed. Her cancer has been in check now for quite some time, although she requires regular chemotherapy treatments to stay that way. But the important thing is that she is still here. Why? She is caregiver for her elderly parents, who have had serious challenges over the last year or so. If she weren’t here, what would have happened to them? Who would have looked after them in their time of need?
But her goals, her raison d’être, are far more ambitious than that. She is not just a caring and compassionate daughter. She also has guided young lawyers toward success, enabling them to pass the California bar. When her doctors informed her that it was time to retire, she balked, insisting on keeping her career intact, even as she scaled back her workload. It seemed like every time she was on the brink of success, cancer knocked her back on her fanny.
One of the early casualties of this unpleasant reality was her music. If you cannot hold your instrument, it’s hard to be a musician. Neuropathy, muscle weakness, mobility issues, and mind-numbing pain all took their toll on her. When she recently recorded her version of Santa Baby, we were so thrilled, not just because she stepped up to the microphone, but because she took that song and made it her own. She was getting back into the limelight, where she belongs.
The truth is that my friend doesn’t fit the mold of what has long been held to be the vision of a Stage 4 cancer patient. She has so many struggles, but she also has so many successes.
Stage 4 cancer patients often straddle the divide between life and death. As their disease is managed over years, not months, and as treatments have improved, these survivors are in perpetual limbo. Why does that matter?
It’s hard to keep a job when you have persistent, yet treatable long-term health challenges. If my friend had followed her doctors’ advice four years ago, her income would have been wiped out and she would be completely dependent on disability payments. Her teaching opportunities would have dried up. She would have had little hope of restarting her career.
This is often a typical experience for Stage 4 patients like the banker I met long ago. He bemoaned the fact that he was forced to give up his position in a financial institution because of his disease because he wasn’t expected to survive it. Four years later, with his stomach cancer managed, he floundered, trying to restart his career. He still had much he hoped to accomplish in the world of finance, yet he was on the outside, looking in, all because the expectation was that he was dying.
We need to start the conversation about how we can empower those Stage 4 survivors who choose to remain active and engaged in their chosen fields, should they feel up to working.
Pain management and palliative care are also crucial for any patient with Stage 4 cancer. There are almost always side effects and complications which can dramatically impact a patient’s ability to get over the obstacles that stand in the way between the “new normal” and everyday life. The better the disease management, the greater the success in navigating said obstacles. It’s important that we understand just how powerful it is when we help these patients find the “work-arounds” that hold them back. Overcoming the challenges of immobility and finding physical adaptations are imperative. How do we help people who are sometimes able and sometimes not able? There are times my friend can walk and times she can’t. There are times my friend can drive and times she can’t. She is able-bodied and yet disabled. That’s because she resides now in two different worlds, and she’s never really sure which one of them she’s in until she runs head-first into trouble.
What kind of accommodations should we make for people whose health fluctuates? We can’t just tell these people to surrender to their disease because they bear the label of Stage 4 cancer. We can’t expect them to give up the things that matter most to them. Nor can we dictate to them what they should or should not do. The doctors who insisted that my friend retire didn’t understand just how important her work is to her. For as long as she can remain engaged in her career, focusing on goals and continuing to advance her agenda, she chooses to do this. It helps her to have a purpose in life. It helps her to feel like she’s still a contributor whether she guides students, cares for her parents, or continues to pursue her beloved music. And to be honest, the world genuinely is a better place because she is still with us. So, who are we to stop her from pursuing her dreams? So many lives have been lost through the years, so many good people whose battles asked too much of them. That’s why we often think of my friend as a walking miracle. She has beaten the odds thus far, and she has put that “extra” time on this earth to good use. But she, just like other Stage 4 cancer survivors, needs more than just cheerful words and prayers.
There will come a time when more and more people survive the disease, and when that happens, we will have to help them maneuver back and forth between the world of active disease treatment and remission, without shutting them out of, or off from, what makes life worth living.
Is it a drain on healthcare to have people survive their disease? Yes and no. For every patient who adapts to the challenges, doctors learn more about what works and what doesn’t work. They find what is cost-effective and what wastes valuable time, money, energy, and resources. Some chemotherapy treatments have turned out to cause more damage than good. Some of the newer options that empower the immune system to fight the disease are showing promise. As these survivors begin to move away from a terminal prognosis, they need a better transition to more effective support systems.
How can we provide personal assistance, services, treatments, career options, and insurance coverage that works for them? Obviously, we know that what works for some doesn’t work for others. Can we find new ways to be mindful of their needs and responsive to their ever-changing physicality? Maybe what we really need is for Stage 4 patients to educate us about what they really need. While they are able, we should help them to flourish. And while they are disabled, we should work to empower them in ways that show that we recognize and respect that their lives are in limbo. We should strive to be that “bridge over troubled water” that Simon and Garfunkel sang about so eloquently, not just because we feel sorry for Stage 4 survivors, but because we understand just how valuable their lives really are, and we remain grateful that they are with us still.
