LESSONS LEARNED FROM CANCER

When my husband was diagnosed with cancer, I found myself in a mad scramble for resources, assistance and support. I must say, that as I researched the oncology databases for everything I could find about his kind of cancer, consulted with myriad oncology-savvy friends and colleagues and sorted through confusing and conflicting cancer-fighting advice, I thought to myself, “Yikes, if I’m this overwhelmed, what on earth do people do who aren’t ‘in the business’, so to speak?”. It’s hard enough to just deal with a cancer diagnosis. Figuring out the oncology maze for what the best treatment strategy is… well, that’s something else altogether.

So I thought I’d pass along some thoughts and ideas that I picked up along the way.

• Don’t assume your oncology providers know what they’re talking about. You’ll want desperately to believe in them, because you’re so vulnerable, but please double- and triple-check the information you’re getting, even if the healthcare institution thinks it’s the best in town. We fired our first provider, thank heavens (and, yes, they were convinced they were the best in town).
• Use whatever contacts you have to get the most up-to-date information possible. The landscape of cancer treatment is radically changing by the minute these days. There are now many new, multi-targeted oncology treatments that, when used in combination, are often beating the odds, and a lot of well-meaning providers know ZIP about them. This means you have to be proactive at a time when you feel like collapsing. My advice: get cracking; don’t collapse. (We wound up taking advantage of the considerable talents of health writer Henry Dreher , a Cancer Guide who helped us research the options and made sound suggestions; and we went to The Block Center, in Evanston IL for invaluable consultation on nutrition, supplements and off-label drugs for his kind of cancer
• Think outside the cancer treatment box, especially if you know standard oncology protocols have limited success rates. You can tell your oncologist that you’ve read the stats and you want more than just standard care. If that’s not an option at his or her institution, ask if he or she will serve as local backup while you go elsewhere for more cutting edge care. (My husband, for instance, was on a standard protocol, but he was also taking 2 drugs designed for other illnesses, but which happen to have special antiangiogenic properties that kill tumor-feeding blood vessels, along with a modified macrobiotic diet and massive doses of nutritional and herbal supplements from The Block Center. I’m not recommending this for anyone else – but this is just an example of what can be done beyond standard care.
• Be really clear with friends and family, what you need from them and what you don’t need from them. Again, it’s not fair that you have to do this at a time when you have no energy for it, but, trust me, the price of NOT doing it is too high. If you want visits and calls and cards, tell them. If visits, cards and calls feel like an assault, tell them that. If they insist, tell them “It’s out of the question”. And let your saner family members and good friends help out. There’s no better resource and they’ll feel good about contributing; and it will deepen and enrich your relationship.
• Also, be smart about asking people to do what they’re good at. Some friends are great listeners. Others are terrible listeners but great cooks. Still others have a talent for efficient errand running, or internet database searching on your kind of cancer. They’ll be glad to have an assignment they can actually perform well for you, and you’ll be glad for their excellent help.
• When people start giving you unwanted advice, or sharing their own cancer story with the hideous outcome, or guilt-tripping you about how you’re not meeting their needs, you need to be at the ready with a firm, fast response: “That is not helpful” works well, as does “I don’t need to hear that right now” or We need to change the subject”… and, always, my favorite, all-purpose standby, “That is out of the question”. Again, you’re not going to be in the mood to be this assertive, but fake it. It’s necessary protection from well-meaning but clueless people.
• Ask for prayers. Prayers are the best. They are felt by the giver and the receiver alike, and they perform miracles.
• As for resources, guided imagery is frequently used – and for good reason -for mobilizing mind, body and spirit to cohere around fighting the cancer; and it helps with various oncology-related procedures and regimens too. Our Fight Cancer imagery can be complemented by our imagery for Chemotherapy, Radiation Therapy , Successful Surgery , Bone Marrow & Stem Cell Transplantation , Chemo-Related Fatigue , and Relaxed & Awake Medical Procedures . Carolyn Daitch also has a terrific CD of hypnosis and imagery, called Managing the Distress of Chemotherapy . And for people wanting more Bible-based imagery, Rev.Donna Shenk and Robert Miller ND have created a beautiful set of guided meditations based around the psalms, with Christian hymn music softly playing in the background, and accompanied by healing aromatherapy oils to inhale, called Tranquilities.
• addition, we have Bernie Siegel’s video, Affirmations for Living Beyond Cancer , and Carl Simonton’s video, Affirmations for Getting Well Again . Susan Rosen’s Yoga & the Gentle Art of Healing: Recovery after Breast Cancer, is very effective as well.

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