Kathleen’s Osteosarcoma Journey

Tell us about the challenges of chemotherapy.

Chemotherapy is challenging in every way. It’s toxic by definition; it kills the very cells the body is made of. The most unexpected anomalies are apt to break out anywhere. It helped me to remember the misery of chemo is self-limited; eventually chemotherapy ends, and most of its nasty effects end with it.

It’s also boring. Whatever the protocol, it’s deadly dull overall. Chemo takes over pretty much everything for the duration—your body, your time, all your attention—and you have to let it, because the disease is deadlier. I was prepared for that, and remembering it helped me to stay the course.

It seems like you became your own best advocate for treatment decisions.

I discovered that the small audacity of questioning my chemotherapy protocol, however timid, had pierced the hardpan of my dread, and set free a fresh spring of personal empowerment. Having found it, I was able to draw from it again, when my courage wobbled.

So, I do recommend that patients not shrink from inserting themselves into decisions others make for them—even when the others are professional brainiacs. The patient’s lifelong acquaintance with the landscape of herself becomes a map that helps her doctors steer their miraculous skills. The best doctors deeply appreciate it.

What is your perspective on cancer and osteosarcoma now that you are in remission?

In retrospect I’m better able to understand and contemplate what my illness must have cost the others around me. Caregiving is a special skill; good caregiving is a gift.

What is your life like today as a survivor of cancer?

My health and energy have been robust since then, with no recurrence of any kind. Except for the minor annoyances of living with my prosthetic appliance, cancer has become a thing of my distant past, that does not at all impede enjoying a full and active life. Most of my post-cancer challenges have been around reinventing myself as something completely other than I ever anticipated. Something new, out of the leftovers. Not so bad, really!

What is your advice to other patients with osteosarcoma who are perhaps at the start of their cancer journey?

I found it self-defeating, for me as a patient and for my caregivers too, to emphasize the image of cancer as a superhuman enemy, against whom I should summon up the deadliest weaponry, and my most savage self in a battle to the death. Instead, I agree with Anatole Broyard*, who describes illness as “a delicate situation,” for which anger is “too monolithic”. He calls anxiety “the cancer patient’s worst enemy.” He says that both anger and anxiety are “like a catheter inserted in your soul, draining your spirit.”

Instead, I recommend that you surround yourself with experts who can help you understand your illness, and who know your own input can help them understand it.

My concerns, apprehensions, my preparations for what lay ahead engulfed everyone I knew, and terrified my partner. Your loved ones will wish they could make it go away; they will want to help you, to the best of their ability, from their point of view. And you will need help. But their best intentions will not always align with your actual needs. Remind yourself, and them, that that’s okay.

However long the journey may be for you, it’s made up of steps, sometimes a small step, sometimes a giant leap. Take each one in its turn. One foot after another gets you from here to there.

Osteosarcoma changed the trajectory of my life forever, though we could not know that at the time. Still, I am reluctant to call the experience “catastrophic” because it was unexpectedly rich in so many ways, mostly by remaining “present”, intentionally. And it was life. It was my life. Worth every minute.

And never underestimate the power of humor, wherever you can find it. “A merry heart doeth good like a medicine”,** says the proverb of old, descended through millennia to us as “Laughter is the best medicine”. Now we have science to prove it. Can a good joke cure cancer? No, of course not. But nothing triggers the brain’s healing hormones like joy. More than just a distractor, a clap of laughter naturally stimulates a bolus of endorphins and time-released dopamine, which diffuses throughout the body to strengthen the immune system, boost mood, and actually diminish pain—fortifying the patient to take the next step. And it’s something the patient can do for herself.

*Intoxicated by My Illness, 1992.

**Proverbs 17:22. “…but a broken spirit drieth the bones.” King James Version (KJV).