Jerusalem — Fern Reiss thrives on organization, so when she received a breast cancer diagnosis three years ago, at the age of 46, she headed to Amazon.com to search for a book to help her plan her treatments and life outside the hospital.
When she couldn’t find what she was looking for, Reiss, a prolific writer (“The Publishing Game” series, “The Infertility Diet”), writing coach and book promoter, felt compelled to pen the book herself.
“I wanted a book that would tell me what to do, in what order. What to buy and where to buy it. I wanted to know which questions to ask, the tachlis [practical] details of treatment. A book that assumed I was a survivor, not a victim, that dealt with not only my physical condition but my mental and emotional state,” Reiss said during an interview in the garden of her Jerusalem home.
So the writer, who divides her time between Jerusalem and Boston, buried herself in research and doctors appointments and started making lists. Lots of lists.
The result: “The Breast Cancer Checklist” (PublishingGame.com), a step-by-step, day-to-day guide for people diagnosed with the illness with the official subtitle, “The Only Guide for What to do Before, During, and After Breast Cancer Surgery, Chemotherapy, and Radiation.”
“I wanted my life to be as normal as possible, so I had to be organized,” Reiss, who friends consider a born optimist, said. “I had to decide what questions to ask the doctors. I had to arrange childcare for my youngest child on treatment days and I wanted Shabbat invitations. Otherwise I knew I would never leave the house. ”
Reiss, whose mother and sister also had breast cancer unrelated to the BRCA mutation so common among Ashkenazi women, said she found a tremendous amount of information about the illness and resources for patients “but it was so hard to find them.”
To write the book, Reiss scoured not only the latest medical literature but also numerous breast cancer blogs and forums written by breast cancer patients and survivors.
“I found a ton of information the doctors didn’t tell you,” she said.
The book is packed with these tips: That patients should get a thorough dental exam and a flu shot before starting treatment; that grapefruit and Echinacea can interfere with chemotherapy; and that, according to the latest research, scheduling your surgery during the second half of your menstrual cycle is statistically associated with better outcomes.
The book urges patients to rearrange their kitchens before surgery to limit post-surgical reaching and carrying; to investigate whether they are eligible for paid medical leave; to take a ‘field trip’ to the hospital with their kids prior to your treatment to allay their fears; and, to prevent nausea, not to drink beverages with meals during chemotherapy.
“The Breast Cancer Checklist” urges readers to keep track of every conversation with their insurance company and to receipts related to their care, which may be tax deductible. It is imperative, Reiss says, to set up an automatic bill-paying system, especially for monthly insurance premiums.
Just about every chapter, organized chronologically from the day of diagnosis to post-treatment, includes a detailed checklist with space beside each item or question to write in the answers.
There are dozens of checklists: for pre- and post-surgery — making medical appointments, preparing a medical profile, mastectomy, lumpectomy, reconstruction, choosing a medical team, sometimes overlooked medical issues, complementary medicine, pain management, planning a healthy diet and planning your end-of-treatment vacation (for Reiss, the light at the end of the tunnel).
Other chapters deal with side effects; when to call your doctor; helper etiquette; how to discuss your illness with your co-workers and children’s teachers; and tracking the help you receive and the things you’ve borrowed.
Reiss said she picked up a great deal of useful information from her fellow patients, especially at the hospital where she was treated in Jerusalem.
“Here in Israel all the patients sit in one big chemo room and everyone is schmoozing.” She looked forward to free massages provided to cancer patients by the Yuri Stern Center and the volunteers who delivered free meals to outpatients throughout the day.
“In the morning it was breakfast trays, at noon, sandwiches. At 2 p.m. it was the cake lady. There was always a Jewish mother feeding you.”
When Reiss received treatment in Boston, “it was much more luxurious, in individualized cubicles with heated, massaging recliners. But it felt lonely,” she said.
In the book, Reiss advises readers to “use what works for you “and to “ignore the rest.”
She asks patients to “try not to let cancer define you as a person” or to let the experience of cancer totally overwhelm them.
“Yes, treating cancer will take a lot of your time and energy this year. But be sure to make time for other things in life too.”
Having experienced the side effects of cancer treatment, from hair loss to ongoing lymphedema (arm swelling caused by improper lymph drainage), Reiss doesn’t sugarcoat the cancer experience. But she doesn’t consider it the end of the world, either.
“When people express sympathy about my lymphedema, which sometimes involves my entire arm bandaged up like a mummy, I usually tell them, ‘Beats dead.’ That’s really how I feel; in the scheme of things, it could be a whole lot worse.”
And, she says, “It’s been a great way for me to model, for my kids, how to cope with adversity. Everyone in life ends up with something, whether it’s health problems, financial problems, family problems. I think it was a great way to show the kids that in such situations you don’t climb under the covers and hide; you get out there and do the best you can with what you’re given.”
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