Excerpts from This is Cancer

Author’s Note…………………………………………………….xi

Introduction………………………………………………………1

PART 1: DIAGNOSIS

Chapter 1: Welcome to Cancerland…………………….11

• My Doctor Is God, My Doctor Is Mortal
• Nurses: The Good, the Bad, and Everything in Between
• Paperwork: Passport for Cancer Patients
• Waiting Rooms: The Holding Tanks
• Cancerspeak, Part 1: A Translation Guide
• The Cost of Cancer (Literally): Medical Bills, Fees, and Finances
• First Opinion
• Second Opinion
• Off the Clock: Work and Cancer
• Journals, Emails, Blogs, and Other Public Airings
• Friends to Surround Yourself With
• Think Big (But Small)

Chapter 2: Scans, Pokes, and Pricks…………………..51

• Scans
• Pokes and Pricks
• Cancerspeak, Part 2: A Guide to Medical Terms You Will Hear Over and Over (and Over Again)

Chapter 3: Attitude……………………………………………77

• Fear
• Hope
• Other People’s Hopes and Fears
• Navigating the River of Denial and Other Emotional Rollercoasters
• Hold My Hand: The Physicality of Cancer
• Me, Myself, and I
• Psycho-Oncology, or Why to Pay Someone to Listen to You
• The Medicine Cabinet
• Taking Care of Your Caretaker
• Other Cancer Patients Just Get It: Patient Support Groups

PART 2: TREATMENT

Chapter 4: Chemicals and Crispy Critters…………. 101

• Chemo 101
• Surgery
• Radiation 101
• Pain
• Clinical Trials: To Be a Guinea Pig or Not?

Chapter 5: Food………………………………………………165

• Eat, Drink . . . You Have Cancer
• Weight Watchers

Chapter 6: Fallout…………………………………………… 177

• Hair: The Bald and the Beautiful
• Planning for Parenthood: Fertility Preservation

Chapter 7: Horizontal, or: How to Sleep……………. 191

• Insomnia (I’m Wide Awake)
• Fatigue
• Counting Sheep and Other Sleep Aids

Chapter 8: There Is No Prize for the Best Patient…………..197

• Vital Signs: How to Ask for Help
• Slap On a Little Lipstick: Small Pick-Me-Ups

Chapter 9: The Family……………………………………..205

• Parenting with Cancer, or Packing Lunches While Bald
• “You Take Out the Garbage,” or: Cancer and Marriage
• The Big Talks: Wills and Advance Medical Directives
• We Are Family: Family Dynamics and the Big C

Chapter 10: Boarding Pass:

Traveling with Cancer……………………………………225

• Planning a Getaway: A Day Off from Cancer
• Move It: Exercising During Cancer Treatment

Chapter 11: The Language of Cancer:

Talking Points…………………………………………………235

• Oversharing and What Not to Say to Someone with Cancer
• Handle with Care: How to Talk to Your Patient—
• A Guide for Caretakers

PART 3: SURVIVAL

Chapter 12: Clear Margins………………………………..243

• Survival
• Follow-Up Plan
• Post-Traumatic Stress Disorder (PTSD)
• Recurrence
• Hot Flashes and Mood Swings: Hormones and Menopause
• Pillow Talk
• Meet and Greet: Meeting Other Survivors
• Expect the Unexpected

PART 4:

Epilogue…………………………………………………………261

PART 5:

Notes……………………………………………………………..266

• Sample Medication Chart
• Sample Questions for Your Oncologist
• Sample Patient “Cheat Sheet”

Resources……………………………………………………… 271

Appendix………………………………………………………..299

Index……………………………………………………………..302

 

I am a Stage IV inflammatory breast cancer survivor. I went from perfectly healthy (lots of yoga, lots of broccoli) to not feeling great to being told I had an extensive tumor in my left breast and cancer that had spread to my lymph nodes and potentially a rib. I was given roughly three to five years to live, all at the age of thirty-seven. With the help of an incredibly diligent family and a team of brilliant doctors and a tiny green chemotherapy clinical trial drug, I’m still here. It is not an exaggeration to say it’s a miracle that I’m alive. I am a survivor, and I am grateful.

Every cancer experience is unique, but as this book will show you, some of the moments along the way are universal. By way of introduction to me—the person hoping to gain your trust and guide you through this mess—here’s the concise tour of my treatment: I was diagnosed with inflammatory breast cancer (IBC) in November 2012. What makes inflammatory different from other types of breast cancer is how the cancer cells move: The malignant cancer cells block the lymph vessels in the skin, causing redness and swelling in the breast. A rare cancer that spreads rapidly, IBC is diagnosed in approximately 5,000 women in the United States every year. For those who like details, my cancer was ER-positive, PR-positive, and HER2-negative, and I was found to carry a mutated BRCA2 gene. I began chemotherapy within two weeks of diagnosis. When three rounds of

Adriamycin/Cytoxan failed, I was told that a clinical drug trial was my only hope. I got into a Phase II clinical trial after being rejected five times. I was finally accepted into a non-randomized, non-placebo-controlled trial for a PARP inhibitor drug called veliparib (made by AbbVie, a spin-off of Abbott Laboratories) at the City of Hope National Medical Center in Duarte, California. To participate in the trial I was required to travel from Northern California to Southern California every week for six months to receive chemotherapy treatment and the accompanying scans and blood work. I had to leave my two young children with my husband, my mom, a babysitter, or my sister for anywhere from one to three days depending on the week. It was torture, mentally and physically.

When my counts were good, some visits ended with just a blood test and then a return trip to the airport, but other visits ended with a round of chemotherapy (Gemzar or carboplatin or both). I had to keep a trial-drug diary listing the dosage, time, and any side effects, as well as follow strict dietary and lifestyle guidelines. The financial and emotional toll was high; there was no insurance or financial coverage for the travel, only the treatment itself. Family, friends, and complete strangers donated air miles, rental car points, hotel rooms, and their time to travel with me. The treatment ended up working—it shrunk the tumor and qualified me for a non-skin-sparing double mastectomy, prophylactic salpingooophorectomy (removal of the ovaries and fallopian tubes), and removal of nineteen lymph nodes. That was followed by almost three months of intensive radiation therapy and then breast reconstruction one year later. My surgery in August 2013 had “clear margins,” which means the surgeon got all the detectable cancer surgically. (Cancer cells were described to me by one surgeon as “stars”; the surgeon’s job is to remove the stars that have spread out in the targeted area. They get as many of those suckers as possible, but there might be one or two lingering that they can’t find.) I have been disease-free since surgery, but I will always be Stage IV because after that number ranking they never “downstage” you; that’s your number for life. I still see my oncologist every three months, still get blood work and scans three to four times a year, and will be on hormone therapy for the rest of my life. After about two years on the trial chemo drug, my oncologist took me off it (it had done its job, and the doctor feared that long-term use could cause another secondary type of cancer).

With that one phone call from Dr. Kelley in November 2012, I suddenly entered a world that I had always studiously ignored: the medical world. I hate to have my teeth cleaned, much less sit in paper gowns in waiting rooms and bare all. I used to be so terrified of doctors that I’d break into hives across my chest, causing the doctors to immediately test for allergies. I didn’t feel like myself for a couple of months before I went to my GP (general practitioner); I blamed it on being a tired mom. I felt pain in the left side of my chest and noticed some changes in my left breast, and after a round of antibiotics was ineffective, my doctor referred me to a breast surgeon. At no point did I think it could be cancer; everyone kept saying, “Cancer doesn’t hurt.” I barely got to the breast surgeon for a diagnosis; I tried to put off the appointment so I could help cook that year’s Thanksgiving dinner. Dr. Kelley called me the morning after Thanksgiving at 7:00 am to deliver the news. She told me she didn’t like to do it over the phone, but she was in Georgia, and could I please sit down.

Within one hour of that phone call my husband and I were driving to the hospital so I could be admitted for tests and immediate treatment. I was so sick so quickly that much of it occurred in a blur.

Before I was diagnosed, I didn’t even know there were types of breast cancer, or even grades of cancer. I was completely, blissfully oblivious to the world of cancer other than the snippets I had heard, read, or seen on television. I started taking notes in a journal on my laptop, writing down my fears and frustrations when I could (especially during the wicked bouts of insomnia created by chemotherapy), and my sister and husband took detailed notes at every appointment. But what I craved (besides icy cold lemonade) was honesty. There are a lot of whispers and pained looks that surround a cancer diagnosis. And there is a lot of silence.

In those first months, I talked to nurses and doctors and X-ray technicians and survivors, but what I didn’t hear was anything particularly helpful regarding the day-to-day stuff. I wanted to hear—or to read—what was really going to happen. What will it feel like to get a needle stuck in my armpit? What will I say to my kids when they ask what happened to my hair? What could I eat? What would chemo feel like? What would radiation do to my skin? What would I look like without breasts? I love nothing more than a plan and a list, and neither was in sight.

I remember so clearly sitting on an exam room table speaking to a radiation oncologist at the MD Anderson Cancer Center in Houston—we were there to get a second opinion—and she looked at me and said, “This fucking sucks. It’s okay to cry and say it. Forget the pink warriors. You have cancer and it sucks.”

And that was what I craved—to hear someone say something honest about what was happening. I felt so alone, and so isolated, and the only thing I wanted was answers. Books had come to my aid during pregnancy, before job interviews, when I needed to learn a language; my whole life I turned to books for answers. Why not this? The best I could find during the initial steps of my diagnosis were somber hospital brochures titled “Coping with Cancer,” filled with photos of half-smiling patients and their caregivers drinking tea. I needed something else, something honest and at times funny; something real and usable but also a companion, a friendly voice in your ear on a bad day; something that points out the absurdity of your “new normal”; something that addresses the grim specifics that everyone else seems to gloss over; something to flip through when you’re wondering “what to expect” from doctors, family, friends.

When I was first diagnosed with cancer, I pictured the Hollywood version of my sick self: a scarf on my head, a blanket on my lap, and an IV in my arm, with one doctor and a few nurses hovering and a family that supported me and cheered me up. Basically me, but bald and slightly nauseous.

It’s not like that.

It’s a team of doctors, endless nurses, endless scans and blood draws and procedures and confusion and frustration and exhaustion. And that’s just the first month.

Now I know that life will never be the same again after a cancer diagnosis. I know you will wish, hope, pray for things to reset and go back to “normal,” but they won’t. I know now that cancer changes everything.

Oh, how I wish someone had told me that on day one. How I wish someone had given me a book that said it all, in honest/grave/mordantly funny language, and saved me a lot of time and whiplash.

I wish someone had written this book.

My family and I had to educate ourselves while fighting for my life. I didn’t have the time or energy for support groups (many of us don’t). The research my family and friends did, together with real intel, bits of advice, and vignettes from young survivors, is what This Is Cancer is about.

This is everything I have to share on the subject; what I heard and liked, what got me through the appointments, the assaults on my body, and the general shittiness that is being a cancer patient. I want to help you get through this, the most surreal, infuriating journey you’ll ever be on. And honestly, I can’t stand the word journey—I prefer the term road trip. (Imagine a cross-country trip in a covered wagon, in the dead of winter, with an old mule pulling the wagon mile by excruciating mile… while cars whiz by.)

Still, this isn’t a memoir or a pink ribbon “go, fight, win” book. It’s something you can stick in your purse or bag and pull out while you’re waiting, and waiting, and waiting in the infinite number of waiting rooms that are in your future. You don’t have to read it cover to cover, or even finish the entire thing. It’s the one book you should be able to laugh with and feel relieved—relieved—to read. To feel “me, too.” To feel heard, when no one else in the whole entire world can possibly know what it’s like to be you right now.

Now, three-plus years in, and armed with more than my fair share of cancer experience and the stories of others, I have put together this book for first-timers that they desperately need, that I desperately needed.

A book that says things like:

• Chemo will be like the flu times a thousand and will leave a lingering chemical taste in your mouth for months.
• Your children might not look at you when your hair falls out.
• There is no limit to what you will put yourself through when told it might save your life.
• Stay away from the Internet. And don’t let anyone tell you “what they looked up” about your diagnosis.
• You’ll be surrounded by people, but you’ll feel lonely, and alone, sometimes.
• Lexapro is Tylenol for the soul.
• You won’t be able to manage your life without an entire community helping out, and this will go on for much longer than you think.
• Always question, always persevere.

Said another way, This Is Cancer is a chronologically ordered primer, a “what to expect when you’re expecting” reference book for the diagnosis you don’t want but are stuck with. This is the book that you and your loved ones or support system keep in your “heading to the hospital bag,” because it  tells you what’s going on and keeps you company. Fasten your seat belt and let’s get to it.

 

There are myriad resources for cancer patients in the United States, available through both public and private organizations. It’s just a matter of finding them. (This is the time to use the Internet—for resources as well as to help plan logistics.) Even the most obscure, rare cancers have foundations and supporters.

I’ve listed as many resources as I could here, but I highly encourage you and your “team” to research anything you might need—from a family retreat or survivor’s hiking trip to finding assistance with the cost of a wig or prescription medication.

Because I am a breast cancer patient, there are a few more resources listed here that are dedicated to that specific cancer. But unless noted, the resources here are for all adult cancer patients,  male and female.

General Services and National Organizations

American Brain Tumor Association: www.abta.org; (800) 886-2282

The ABTA is a national organization that funds brain tumor research as well as providing educational materials and resources to patients and caregivers.

American Cancer Society (ACS): www.cancer.org; (800) 227-2345

This is a national nonprofit that provides a wide range of assistance, from cancer facts and medical research to patient support, fundraisers, and events throughout the United States. The website is available in English, Spanish, and several Asian languages. You can also have a live chat with an ACS representative and/or look for a local ACS office in your area. ACS also runs the tlc (Tender Loving Care) program, which sells hair-loss and mastectomy products such as wigs and breast prosthetics. TLC (Tender

Loving Care): www.tlcdirect.org, (800) 850-9445

American Lung Association: www.lung.org; (800) 586-4872

This national nonprofit provides information, educational materials, and advocacy for lung health and diseases. They also provide specific resources for lung cancer patients, including an “action guide,” a survivor support community, and “LungForce” program where patients and survivors can share their stories. Website also available in Spanish.

American Society of Clinical Oncology (ASCO): www.asco.org, www.cancer.net

ASCO is a membership of oncologists, founded in 1964, that provides professional guidelines and advocacy for research, among other topics. Their patient-oriented website, www.cancer.net, provides reliable, detailed information about current cancer research, clinical drug trials, and tools for navigating cancer and survivorship. (Cancer.net is also available as a mobile app.)

American Thyroid Association: www.thyroid.org; (800) 849-7643

The ATA is a nonprofit that is devoted to prevention, research, and providing information about thyroid diseases, including educational materials about, and treatment guidelines for, thyroid cancer. (Thyroid cancer is a common cancer among young adults ages twenty to thirty-nine.) Educational materials also available in Spanish.

Association of Oncology Social Work (AOSW): www.aosw.org, (847) 686-2233

AOSW is an international organization of oncology social workers. Their website offers a list of resources, a blog that covers patient issues, and tips for patients.

Be the Match: www.bethematch.org; (800) 627-7692

A nonprofit that provides extensive patient services and resources for blood cancer patients, including “Be the Match Registry,” operated by the National Marrow Donor Program (NMDP) that matches patients with bone marrow and cord blood donors. Educational materials also available in Spanish.

CancerForward: www.cancerforward.org; (713) 840-0988

“The Foundation for Cancer Survivors,” CancerForward is a nonprofit devoted to cancer survivorship, with resources, online support groups for cancer survivors of all ages. Started by a breast cancer survivor in Houston in 2010, the website provides helpful links to survivorship issues.

Cancer Support Community: www.cancersupportcommunity.org, (888) 793-9355

This nonprofit provides a global network of assistance for cancer patients, from how to talk to your kids about cancer, clinical trials, and educational brochures on cancer topics (“Frankly Speaking About”) to live chats. (This organization formed with the merger of The Wellness Community and Gilda’s Club Worldwide.)

Dear Jack Foundation: www.dearjackfoundation.org

Founded by musician and leukemia survivor Andrew McMahon, Dear Jack is a nonprofit that offers programs, grants, and resources for young adult cancer patients and survivors (ages eighteen to thirty-nine). Their “LifeList” program helps fulfill a wish for a patient, from a visit to the set of a television show to a play structure for their kids, Dear Jack aims to make each patient’s “LifeList” come true. The “Breathe Now” meet-up yoga program will launch in several cities throughout the United States, with the goal of introducing yoga, breath work, and meditation to patients and survivors.

Lacuna Loft: www.lacunaloft.org

A web-based nonprofit founded by a Hodgkin’s lymphoma survivor that “provides young adult cancer resources no matter where you are.” They offer a range of online support for patients, survivors, and caregivers ages eighteen to thirty-nine. Their goal is to end the isolation that is common among cancer patients; info on topics like dating and sex during treatment, exercise, and nutrition are available as well as a book club, journaling group, and writing group.

Leukemia & Lymphoma Society: www.lls.org; (914) 949-5213

A national nonprofit with local chapters, the LLS is dedicated to “fighting blood cancers.” They provide detailed educational information about blood cancers in addition to offering resources such as peer-to-peer support for patients and caregivers. The LLS website is also available in Spanish.

National Cancer Information Center: (800) 227-2345

Run by the American Cancer Society, this center is available for patient information twenty-four hours a day, seven days a week; Spanish and other language assistance is also available.

National Cancer Institute (NCI): www.cancer.gov, (800) 4-CANCER (1-800-422-6237)

This is an extremely helpful resource for medical explanations and finding cancer care; online chat help is also available.

The National Hospice and Palliative Care Organization: www.nhpco.org, (800) 658-8898

An organization that provides detailed resources, education, and support for patients facing end-of-life and end-of-care decisions.

National Institutes of Health (NIH): www.nih.gov

NIH oversees the NCI and CDC. It also has a small clinical practice where they treat some patients with rare cancers as part of a study at their facility in Bethesda, Maryland. Another good source for clinical trial listings.

National LGBT Cancer Network: www.cancer-network.org

This program advocates for, and provides resources to, lesbian, gay, bisexual, and transgender cancer patients.

Nueva Vida: www.nueva-vida.org; (202) 223-9100

This is a nonprofit dedicated to helping Latinos and Latinas through the entire cancer process, from diagnosis to survivorship. They have three offices to serve patients in the mid-Atlantic states: Baltimore, Washington, DC, and Richmond, Virginia. Education materials are available in both English and Spanish, and the website is available in Spanish.

Oral Cancer Foundation: www.oralcancerfoundation.org, (949) 723-4400

Founded by oral cancer survivor Brian Hill, the OCF was set up to educate the public about oral cancer as well as provide patients with educational resources such as financial assistance, health insurance information, and clinical trial listings. In addition to funding oral cancer research and patient advocacy, the website offers a secure patient online chat forum for oral cancer patients.

Stupid Cancer: www.stupidcancer.org; (877) 735-4673

This nonprofit, founded by a young adult brain cancer survivor, is devoted to the young adult cancer population (ages eighteen to thirty-nine). Based in New York City, they offer a wide variety of services, resources, and events for patients and survivors.

Testicular Cancer Society: www.testicularcancersociety.org, (513) 696-9827

Founded by a testicular cancer survivor in Ohio, TCS provides support and resources for men diagnosed with testicular cancer (which is the leading type of cancer among men ages fifteen to thirty-five).

The Ulman Cancer Fund for Young Adults (UCF): www.ulmanfund.org, (888) 393-3863

This Baltimore nonprofit was created by a survivor for cancer patients and survivors who are fifteen to thirty-nine years old. The UCF offers a variety of support services, including peer connections, college scholarships for patients and survivors, patient navigation support, exercise support for survivors, and direct support for patients being treated in Maryland and the Washington, DC, area.

US Food and Drug Administration (FDA): www.fda.gov, (855) 543-3784

The FDA is a reliable source for information about drugs and medical devices, from side effects and medicine safety to clinical trials and drug approvals. They also have information about safely disposing of medications. (The FDA falls under HHS, Department of Health and Human Services.)

Financial Information/Counseling and Legal and Employment Resources

CancerCare: www.cancercare.org; (800) 813-4673

CancerCare is a national organization that offers financial assistance programs for people affected by cancer and provides publications and other resources, including the AVONCares direct financial assistance program for breast cancer patients.

The Cancer Financial Assistance Coalition (CFAC): www.cancerfac.org

CFAC is a group of national organizations that provide financial help to patients. The group offers a national database of financial resources that’s searchable by both diagnosis and type of resource needed.

Cancer for College: www.cancerforcollege.org; (760) 599-5096

A nonprofit started by two-time cancer survivor and amputee Craig Pollard, Cancer for College provides scholarships for cancer survivors and amputees of all ages enrolled in a college in the United States and Puerto Rico. Apply online.

Cancer Legal Resource Center: www.disabilityrightslegalcenter.org/cancer-legal-resource-center, (866) THE-CLRC (1-866-843-2572)

Part of the Disability Rights Legal Center in Los Angeles, the CLRC provides information and education about insurance, employment, and other cancer-related legal issues to both cancer patients and healthcare professionals.

Cancer + Careers: www.cancerandcareers.org

This is a nonprofit that helps cancer patients in the workplace, including providing educational materials, seminars, and career coaching.

Equal Employment Opportunity Commission (EEOC): www.eeoc.gov, (800) 669-4000

The EEOC website has information about cancer in the workplace in terms of employee and employer rights. (The website is also available in Spanish and six other languages.) They also have fifteen district offices that can be contacted.

GiveForward: www.giveforward.com

With GiveForward, individuals can create a free web page to request funding assistance, and it includes a specific section for fundraising for cancer patients and medical bills. They charge an average fee of 5 percent to process payments.

HealthWell Foundation: www.healthwellfoundation.org, (800) 675-8416

This independent nonprofit organization helps patients with chronic, life-altering diseases pay for deductibles, insurance premiums, and medication costs. There are certain exceptions, so check the website.

HOPE for Young Adults with Cancer: www.hope4yawc.org

This nonprofit helps young adult cancer patients ages eighteen to forty with financial assistance, special events, resource navigation, and information.

National Foundation for Transplants (NFT): www.transplants.org, (800) 489-3863

NFT provides funds for patients needing transplants, including bone marrow and stem cell transplants.

National Society of Genetic Counselors (NSGC): www.nsgc.org

NSGC provides a list of genetic counselors in the United States.

Ralph Lauren Center for Cancer Care: www.ralphlaurencenter.org, (212) 987-1777

Working in partnership with Memorial Sloan Kettering Hospital in New York City, the Ralph Lauren Center provides referrals as well as services like dental care, psychotherapy, legal services, and Care Navigators, who coordinate with nurses and staff to help patients navigate cancer from diagnosis through survivorship. Currently the Center works with patients in every borough in New York City. They accept many insurance plans and also have a financial assistance program for qualified patients. Appointments are available through their website or by phone.

Medication and Treatment Assistance

The Assistance Fund: theassistancefund.org; (855) 845-3663

The Assistance Fund provides financial support to chronically ill patients with high-cost medications.

Good Days: www.mygooddays.org

Good Days helps patients with a chronic disease pay health insurance copays for medication.

National Patient Advocate Foundation (PAF): www.npaf.org

NPAF helps patients work with insurers, employers, and those to whom they owe medical debt, and can often help patients who are denied access to clinical drug trials or denied coverage for prescription drugs.

NeedyMeds: www.needymeds.org; (800) 503-6897

This is an information source about companies that offer patient assistance programs, which help those who cannot afford medications obtain them through the manufacturer at no or low cost.

Partnership for Prescription Assistance: www.pparx.org, (888) 477-2669

This program helps qualified patients who lack prescription drug coverage obtain the medications they need through patient assistance programs.

Patient Access Network (PAN) Foundation: www.panfoundation.org, (866) 316-7263

The PAN Foundation assists cancer patients with out-of-pocket costs associated with their treatment.

Patient Services, Inc. (PSI): www.patientservicesinc.org, (800) 366-7741

PSI provides assistance with health insurance premiums, co-payments, and travel expenses for people with chronic diseases. Apply online.

PfizerRxPathways: www.pfizerrxpathways.com; (866) 706-2400

A patient assistance program from Pfizer, a pharmaceutical company. The program helps eligible patient get access to Pfizer medicine at a discount or for free; they also provide insurance counseling and co-pay assistance. They work with health clinics and hospitals in every state with a searchable database by zip code. Apply online; website is also available in Spanish.

RxHope: rxhope.com; (877) 267-0517

RxHope helps cancer patients obtain free or low-cost prescription medications.

StudyConnect: www.BMSStudyConnect.com; (855) 907-3286

This website is run by Bristol-Meyers Squibb (BMS), a biopharmaceutical company, and provides information about clinical studies sponsored by BMS.

Resources for Parents in Treatment

American Academy of Child and Adolescent Psychiatry (AACAP), aacap.org

A professional organization of child and adolescent psychiatrists, their website includes information to help families talk about cancer to kids of all ages as well as a detailed resources section. Materials also available in Spanish and Chinese.

Cancer in the Family Relief Fund: www.cancerfamilyrelieffund.org

This is a charitable organization that encourages and facilitates grants to children whose parent or guardian is struggling with a diagnosis of cancer. The grants support the children’s extracurricular activities while their parent focuses on treatment and recovery. Submit an application online.

Camp Kesem: campkesem.org; (260) 225-3736

Camp Kesem is a free summer camp program for kids whose parents are going through cancer treatment or have passed away from cancer. Run by college students who have gone through specialized training, there are sixty-two chapters in the United States. The camps are one-week “sleepaway” camps for kids age six to sixteen and are held at college campuses.

Kids Konnected: www.kidskonnected.org; (800) 899-2866

Founded by the son of a cancer patient, this nonprofit offers useful tools for parents for talking to kids about cancer, as well as resources for kids and teens. They also hold a free summer camp in California for kids ages seven to thirteen who have had a parent diagnosed with, or lost to, cancer.

Hair and Personal Care

American Cancer Society Wig Bank Line: (877) 227-1596

This program provides free wigs to women in need who have lost their hair due to cancer treatment.

Cancer Be Glammed: www.cancerbeglammed.com

This site is dedicated to non-medical essentials for cancer patients, from bathing suits and pajamas to cancer gift baskets and skin care products. Founded by two women whose lives were directly affected by cancer, their goal is to help patients “recover with dignity, self-esteem, and style.”

Chemo Diva Halo Wig: www.chemodiva.com; (813) 451-8401

Chemo Diva is a custom wig maker that uses your own hair. Detailed instructions are on the website; the wig could be covered under your health insurance plan.

DigniCap: www.dignicap.com; (877) 375-8070

This is the only FDA-approved cold cap scalp cooling system. (See Hair: The Bald and the Beautiful in chapter 6 for more on cold caps.) The DigniCap website provides detailed information for both patients and health care providers, including a list of infusion centers that offer the cap.

Look Good Feel Better (LGFB): www.lookgoodfeelbetter.org, (800) 395-5665

LGFB was founded in 1989 by the Personal Care Products Council Foundation to help cancer patients (women, men, and teenagers)

improve their self-confidence while undergoing treatment through group, individual, and self-help sessions for things like skin changes and hair loss. This is a non-branded program affiliated with the American Cancer Society that is staffed by cosmetology professionals who volunteer their time. Go online or call 24 hours a day.

Lymphedivas: www.lymphedivas.com; (866) 411-3482

Started by Rachel Levin Troxell, who passed away from breast cancer, Lymphedivas “provides medically correct fashion for lymphedema” and sell a variety of compression garments for women and men (called Lymphedudes). Rachel’s brother, mother, and father (a physician) now run the business in Rachel’s memory.

Mondays at Racine: www.mondaysatracine.org; (631) 224-5240

Racine Spa in Islip, New York, provides complimentary salon services to cancer patients every Monday. The cancer care program was created in 2003 by owner Cynthia Sansone and her four sisters, who watched their mom go through cancer treatment. Racine was the inspiration for the Academy Award-nominated short film Mondays at Racine (a must-see),  which documents cancer patients as they lost their hair during treatment. Racine has inspired many affiliate programs in spas and salons around the United States. Sansone has created a toolkit for other salons to create their own “Mondays,” so check with your local beauty salon or spa to see if they offer a similar program or check the Racine website for their “Mondays Salon” listings.

Nearly You: www.nearlyou.com, (866) 722-6168

Nearly You is a source for mastectomy products, including eighty-six types of breast forms, swimsuits, and post-surgical items like camisoles. Their website has detailed measuring guidelines; online and telephone assistance is available.

Pantene Beautiful Lengths: www.pantene.com

Launched in 2006, this program collects real hair to make wigs for female cancer patients. Pantene, a Proctor & Gamble company, partners with the American Cancer Society’s Wig Bank Line to distribute the wigs. Go to their website for specifics on how to donate hair or plan your own hair donation event.

Penguin Cold Caps: www.penguincoldcaps.com

A manufacturer of cold caps to help minimize hair loss during treatment (for more information see Hair: The Bald and the Beautiful in chapter 6), Penguin rents caps to patients directly. Telephone customer service is available; see the website for details.

UV Skinz: www.uvskinz.com; (877) UV-SKINZ (887-5469)

This sun protection clothing company was founded by Rhonda Sparks, who lost her young husband to skin cancer. From baby to adult, all of the clothing is SPF50+, the highest level of coverage to protect skin from the sun.

Miscellaneous

CaringBridge: www.caringbridge.org

CaringBridge is a nonprofit that allows people with health issues to create a free website where they can receive donations and well wishes, as well as coordinate assistance with such things as meals. It also includes a journal section for the patient to write a blog. (The sites are ad-free and private.)

Death Over Dinner: www.deathoverdinner.org

This is an organization that helps people have the conversation about how they want to die; in other words, “the most difficult conversation you will ever avoid.” Founded by Michael Hebb, the website gives step-by-step instructions for preparing for a dinner where you do just that, and includes written materials and a video.

Emily McDowell Studio: www.emilymcdowell.com

Artist (and Hodgkin’s lymphoma survivor) McDowell founded a stationery and gift company that makes an “empathy card” line of cards you will actually want to send to a cancer patient—and that they will want to receive. Her cards are available through the website and select paper stores.

Lotsa Helping Hands: www.lotsahelpinghands.com

This is an online resource for creating a personal calendar for coordinating meals, household help, and other tasks. Creating a “community” is free, and anyone who joins the community can sign up to help.

MyLifeLine.org

Founded by an ovarian cancer survivor, this nonprofit provides free, private, and personal websites for cancer patients and their caregivers. Patients can set up a page to write updates, create a calendar to schedule help, or set up a donation page to collect funds for treatment.

PillPack: www.Pillpack.com; (855) 745-5725

This is an online, full-service pharmacy based in Manchester, NH, that packages your medications in boxes by time of day, making it easy to organize multiple medications. You pay standard co-pays and shipping is free; they carry most medications as well as over-the-counter products. (Note: they do not fill Schedule II prescriptions.)

Wellist: www.wellist.com; (855) 935-5478

Wellist is a free online resource for cancer patients and their friends and families to get connected to services they need outside of the hospital. They have personalized recommendations for services like meal delivery and home cleaning, as well as supportive services like integrated therapies and support groups. Wellist offers local recommendations in the Greater Boston area and over four hundred different national recommendations. The site also offers a gift registry called a “Wellistry” as a way to let friends and family know how they can support the patient. One hundred percent of all donations go directly to the patients, except for a small processing fee. Wellist also offers live phone and email support.

Fertility Resources

Hope for Two: www.hopefortwo.org; (800) 743-4471

Hope for Two is an international nonprofit dedicated to helping women who are pregnant when they’re diagnosed with cancer. The program refers to itself as “The Pregnant with Cancer Network,” and provides emotional and educational support.

Inspire: www.inspire.com

Inspire offers online patient communities with support groups for specific cancer patients facing or dealing with infertility.

Livestrong Foundation: www.livestrong.org/we-can-help/fertility-services

Livestrong offers a variety of fertility services, including lists of fertility centers that provide discounts to cancer patients, donated fertility drugs, and a risk calculator to see how some cancer treatments can affect fertility.

National Comprehensive Cancer Network (NCCN): www.nccn.org

NCCN is a not-for-profit alliance of twenty-six of the top cancer treatment centers dedicated to cancer patient care and research. They offer resources for financial issues, health insurance reimbursement, and treatment education in text and app form, and they created an online “flipbook” that shows fertility preservation options.

Oncofertility Consortium: www.oncofertility.northwestern.edu

This site provides a list of adoption agencies that will work with couples with a cancer history.

Save My Fertility: www.savemyfertility.org

This is a website and iPhone app that has extensive information for men and women facing cancer-related fertility issues as well as parents of children who have been diagnosed with cancer. Established in 1997 by the Endocrine Society.

Crowdfunding Websites

Note: All of the crowdfunding websites listed here allow you to set up pages with no fundraising minimums and no deadlines, so the funding sites stay active as long as you need them. They also offer mobile apps so you can track funding and donate through your cell phone.

CrowdRise: www.crowdrise.com

CrowdRise allows individuals and nonprofits to set up free crowdfunding website pages. They charge a total fee of 3 percent for all donations.

GoFundMe: www.gofundme.com

This is an online fundraising site that takes approximately 8 percent of each donation you receive.

IndieGoGo: www.indiegogo.com

IndieGoGo is an international crowdfunding site, and charges 5 percent of the total funds raised.

YouCaring: www.youcaring.com

As a “compassionate crowdfunding” site, YouCaring doesn’t charge a fee for funds raised through a campaign; the only fees are charged by PayPal.

Local Service Organizations

Local service or volunteer organizations such as Catholic Charities USA and Jewish Social Services may offer financial assistance and meal delivery or food pantry assistance. Some of these organizations offer grants to help cover the cost of cancer treatment, and others provide assistance with specific services such as travel or medications.

General assistance programs providing food, housing, and other services may be available from your county or city department of social services. Many cities have emergency funds, either specifically for cancer patients or anyone with a serious illness. Check with your city for more information.

Travel and Temporary Housing Assistance

Air Care Alliance (ACA): www.aircarealliance.org; (888) 260-9707

This organization maintains a list of free transportation services provided by volunteer pilots and charitable aviation groups.

Air Charity Network: www.aircharitynetwork.org; (877) 621-7177

This organization coordinates free air transportation in unpressurized small aircraft for people in need through a network of volunteer pilots in the United States.

Corporate Angel Network: www.corpangelnetwork.org, (866) 328-1313

This group arranges free air transportation for cancer patients and bone marrow recipients and donors traveling to treatment using empty seats on corporate jets. (A family member can travel with you.) Register online within three weeks of your medical appointment to request flights.

Footprints in the Sky: www.footprintsflights.org; (303) 799-0461

This Denver-based nonprofit, founded by pilot Johnny Langland, provides free transportation to patients and their family members or a caregiver on corporate or private planes. Fill out a flight request form online; there is a $35 application fee.

Healthcare Hospitality Network, Inc. (HHN): www.hhnetwork.org, (800) 542-9730

HHN is an association of two hundred nonprofit organizations that provide lodging and support services to families and their loved ones who are receiving medical treatment away from home.

Hope Lodge: www.cancer.org/treatment/supportprogramsservices/hopelodge, (800) 227-2345

Operated by the American Cancer Society, Hope Lodge gives cancer patients and their caregivers a free place to stay while receiving treatment in another city. Currently there are thirty-one Hope Lodge locations throughout the United States.

Joe’s House: www.joeshouse.org; (877) 563-7468

Joe’s House is a nonprofit that offers a “lodging guide for cancer patients” and includes a list of discounted hotels and motels.

LifeLine Pilots: www.lifelinepilots.org; (800) 822-7972

Through LifeLine Pilots, volunteer pilots donate their time and all flight expenses to people in need of free transportation for ongoing treatment, diagnosis, and follow-up care. Request flights and submit the application on their website.

Mercy Medical Angels (MMA): mercymedical.org, (888) 675-1805, (757) 318-9174

A “charitable medical tranportation system,” MMA coordinates various forms of transportation for patients in need, including flights and ground transportation. They work with, and administer, several patient flight services.

National Patient Travel Center: www.patienttravel.org, (800) 296-1217

This resource provides information about long-distance travel for cancer patients and their families in need of travel assistance.

Patient AirLift Services (PALS): www.palservices.org; (888) 818-1231

PALS is a nonprofit network, established in 2010, of volunteer pilots who provide air transportation at no cost to individuals in need of diagnosis, treatment, or follow-up or other compassionate or humanitarian reasons. Based in New York, they have provided over ten thousand free flights since they began.

Research Foundations

Breast Cancer Research Foundation (BCRF): www.bcrfcure.org, (866) 346-3228

This nonprofit funds breast cancer research—to over 200 researchers—as well as sponsoring awareness programs. A reliable source for current breast cancer research.

Cycle for Survival: www.cycleforsurvival.com

This nonprofit raises research money for rare cancers (types of cancer that affect fewer than 200,000 people in the United States, according to the NIH). They hold annual spin cycle events in February and March; all the money raised goes directly to Memorial Sloan Kettering Cancer Center in New York City for cancer research.

The Jimmy Fund: www.jimmyfund.org

This foundation raises money for Boston’s Dana-Farber Cancer Institute to fund adult and pediatric cancer care and research, including clinical trials and patient survivorship programs.

The Laura Mercier Ovarian Cancer Fund (LMOCF): lauramercierovariancancerfund.org

Started in 2012 by co-founder Laura Mercier and president and CEO Claudia Poccia, this nonprofit fund supports research and education for ovarian cancer patients and women at risk for the disease. The company also donates 100 percent of the profits from certain Laura Mercier brand beauty products to the fund, which also works with nonprofits in the United Kingdom, Canada, and France.

Ovarian Cancer Research Fund Alliance (OCRFA): www.ocrfa.org, (212) 268-1002

The mission of this nonprofit (a newly formed organization, combining the Ovarian Cancer Research Fund and the Ovarian Cancer National Alliance) is to treat and prevent ovarian cancer as well as fund research. They offer educational materials in both English and Spanish and the website offers a community “wall” of survivor stories and tributes. They also hold fundraising and community events around the United States to fund their research grants.

Breast Cancer Organizations

African American Breast Care Alliance: aabcainc.org; (612) 825-3675

This organization provides social, emotional, and educational support for African American breast cancer patients.

Breast Cancer Action (BCA): www.bcaction.org, (877) 2-STOPBC (877-278-6722) or (415) 243-4301

A nonprofit advocacy group based in San Francisco, BCA focuses on “health justice” and ending the “breast cancer epidemic.” They provide a wide range of resources and education for breast cancer patients.

Bright Pink: www.brightpink.org

This nonprofit is dedicated to early prevention of breast and ovarian cancer. They provide mentor “PinkPals,” outreach groups, and educational materials to medical schools.

The Carey Foundation: www.careyfoundation.org

Started by cancer patient Linda Carey and her husband Bob, this foundation is devoted to providing female and male breast cancer patients, survivors, and their families with financial assistance. The money raised by the foundation is given through grants to organizations that distribute it directly to those in need to cover costs not covered by health insurance, such as childcare and transportation. The Careys also founded The Tutu Project (www.thetutuproject.com), which promotes breast cancer awareness and helps fund the Carey Foundation.

Comadre a Comadre Project: www.comadre.unm.edu; (505) 277-0111

This is a program for Hispanic/Latina breast cancer patients and their caregivers that is run out of the University of New Mexico in Albuquerque. They provide educational materials, connect patients with services and resources, and provide peer and group support. Materials and support available in English and Spanish.

For3Sisters: www.for3sisters.com

This is an organization that was founded by a firefighter who lost three sisters to breast cancer. It provides education and programs with direct resources for female and male breast cancer patients. Apply online.

Living Beyond Breast Cancer (LBBC): www.lbbc.org, (855) 807-6386

LBBC is a nonprofit that provides support and information for breast cancer patients. They offer a telephone help line, webinars, conferences, and specialized programs such as the Young Women’s Initiative for patients diagnosed under the age of forty-five.

Sharsheret: www.sharsheret.org; (866) 474-2774

Sharsheret is a nonprofit founded by a breast cancer patient that offers resources for young Jewish breast cancer and ovarian cancer patients. A wide variety of resources for patients at every stage, including education, online live chat support, and support for caregivers and family members.

Tigerlily Foundation: www.tigerlilyfoundation.org; (888) 580-6253

This is a nonprofit based in Virginia and founded by breast cancer survivor Maimah Karmo to assist the young adult breast cancer population (ages fifteen to forty). Education, advocacy, support, and empowerment are the goals; more information and resources are on their website.

Triple Negative Breast Cancer (TNBC) Foundation: www.tnbcfoundation.org, (877) 880-8622

TNBC Foundation is a nonprofit specifically for triple-negative breast cancer patients with a commitment to research and patient education, including clinical trial information and caregiver and patient information for certain at-risk groups.

Young Survival Coalition (YSC): www.youngsurvival.org; (877) 972-1011

YSC is a nonprofit that provides information and support to women under forty who are at risk, have been diagnosed with, or are survivors of breast cancer. YSC offers a wide range of information, programs, and fundraisers around the United States.

Zero Breast Cancer: www.zerobreastcancer.org

This is a community-based nonprofit in Northern California that is dedicated to research and the environmental causes of breast cancer. Educational and research materials are available.

Just for Fun

Hopefully you can insert a little bit of fun in this road trip and find a retreat or adventure to participate in, whether you’re in treatment or a thriving survivor. Check out these (mostly) free programs devoted to cancer patients and/or their families. Also ask your medical center or hospital; they sometimes offer their own retreats.

Athletes 4 Cancer: www.athletes4cancer.org; (415) 617-5678

Based in Oregon, this nonprofit offers snow and sea athletic retreats for cancer patients ages eighteen to thirty-nine in Mount Hood, Oregon, and Maui, Hawaii, as well as a survivor retreat in Oregon. Patients must be finished with active treatment at least three months before the start date of the program. The camp is free but travel costs are not covered. Apply online.

Big Sky Yoga Retreats – Cowgirls vs. Cancer: www.bigskyyogaretreats.com, (406) 219-7685

This program is an annual retreat in Clyde Park, Montana, for breast cancer patients and survivors. The four–day retreat combines horsemanship, yoga, and “holistic healing.” Participants are chosen through a nomination process; check the website for details.

Camp Mak-A-Dream: www.campdream.org; (406) 549-5987

Provides a variety of free, year-round camps and programs on a 87 acre ranch in Montana for cancer patients and their siblings. All programs are medically supervised and are offered for kids, teens, young adults, and adults. Travel costs are not included but a limited number of travel scholarships available to qualified applicants. Apply online.

Casting for Recovery: castingforrecovery.org

This group offers free weekend fly-fishing retreats for female breast cancer patients from April through November, with different regions available. Interested patients should apply online, and participants are chosen via a lottery system.

Epic Experience: www.EpicExperience.org; (855) 650-9907

This nonprofit, based in Colorado, provides adult weeklong wilderness adventures for adult cancer patients ages eighteen and over. Apply online.

First Descents: www.firstdescents.org

First Descents’s Out Living It Project offers free adventure camps for young cancer patients (ages eighteen to thirty-nine; you must have been at least fifteen years old at time of diagnosis). Locations around the United States; apply online (travel scholarships are also available for qualified applicants). They also offer specialty options like a “40+” program for survivors ages forty through forty-nine.

Little Pink Houses of Hope: www.littlepink.org

This nonprofit provides vacation houses for breast cancer patients and their families (as well as some couples-only options). The houses are located throughout the United States and patients apply a year ahead. It’s a free weeklong vacation—it’s worth an application! Apply online.

Live by Living: www.livebyliving.org; (303) 808-2339

This group offers all cancer patients, survivors, and their caregivers organized day hikes and walks as well as overnight hiking and camping trips in Colorado. All programs are free; register online.

Pink Lemonade Project: pinklemonadeproject.org

This organization offers retreats for breast cancer survivors and retreats for survivors and their partners. Retreats are staffed by oncology social workers in Washington state and are free of charge, but travel expenses are not covered; apply online.

Reel Recovery: www.reelrecovery.net; (800) 699-4490

This is an organization that provides fly-fishing retreats in various locations to men age twenty-one and over with any form of cancer (patients or those in remission). The twelve-person retreats are staffed by psychosocial professionals and professional fly fishers; apply through their website. (The retreats are free of charge, but participants cover travel costs.)

Smith Center for Healing and the Arts: www.smithcenter.org, (202) 483-8600

The Smith Center offers three- and seven-day retreats just outside their headquarters in Washington, DC. Workshops and one-day retreats are also offered in their offices. Retreats are staffed by licensed psychotherapists. All cancer patients, including those in remission, are welcome to apply.

Stowe Weekend of Hope: www.stowehope.org

This is an annual event held in Stowe, Vermont, for all cancer patients and survivors. Lectures by oncologists discussing the latest cancer findings, art and wellness workshops, hikes, and yoga are offered. First-time attendees attend for free, including lodging (except for a processing fee). Register online; held annually the first weekend in May.

True North Treks: www.truenorthtreks.org; (773) 972-2367

Based in Illinois, True North is a nonprofit that offers free retreats for young adult cancer survivors. Survivors as well as caregivers/spouses are eligible for mini- and week-long retreats held throughout the United States. Apply online.