Copyright 2013 by Dr. Paulette Kouffman Sherman
All rights reserved without written permission of Parachute Jump Publishing. Any duplication, sale or distribution to public is a violation of law.
Parachute Jump Publishing paperback edition, March 2013
Manufactured in the United States of America
Designed by Sara Blum
Edited by Julie Clayton
Professional pictures by Ray Foley
Sherman, Paulette Kouffman.
My Quick Guide Through Breast Cancer: Diagnosis, Surgery,
Chemo & Radiation / Paulette Kouffman Sherman.
LCCN 2013900197
ISBN - (ebook) 978-0-9888905-4-1
1. Illness 2. Spirituality.
3. Memoir. I. Title.
To my cancer sisters everywhere
Introduction
Getting Diagnosed, Preparation & Things to Know
Diagnosis
Your Treatment Choice
Your Cancer Context
Getting Prepared
Supports
Creating Your Healing Team
Getting Mammograms & A Biopsy
Getting a Lumpectomy
Chemotherapy Day
Reward Yourself After Chemo Day
Food on Chemo Days
Take a Chemo Buddy
Medications
Your “No Can Do” List for Chemotherapy
Work
Get Your Sleep
Drink Lots of Water
The Neulasta Shot
Your Blood Counts & Your Chemotherapy Cocktail
BRCA Genes & Testing
Finances & Health Insurance!
Getting a Port
Getting a Short Haircut & a Wig
Henna Crown, Anyone?
Fertility Issues
Other Things to Do for Symptoms & Treatment
Alternative Therapies
Dissenting Opinions!
Summary of Preparation Tips
Healing Team & Acknowledgments
One Final Note
Appendix A
Books, Magazine, CDs, Films & Other Resources
Appendix B
Financial Help Resources
Appendix C
Cancer Organizations
Appendix D
Blood Count Guide & Glossary of Terms
About the Author
Going through breast cancer was one of the hardest years of my life. I wouldn’t wish it on anyone, yet I have found that a lot of growth came from it.
I love to write, so I wrote about my experience and came through it with a book that was more than 300 pages. It was part memoir, part self-help, and a photographic account of how I got through. It was my lifeline and I hoped that in sharing it, it would help other women walk this path too.
I thought it unlikely that women struggling with cancer would want to read such a lengthy book, so one day while I was walking the beach I had a revelation that it was meant to be a 4-book series called The Cancer Path, which could embrace women at different points along their journey.
The book in your hands is Book 1–The Quick Essential Guide to Breast Cancer: Diagnosis, Surgery, Chemo & Radiation. I wanted it to be a slim guide that you could slip into your purse and flip through for easy tips and reference. Even if you don’t have cancer, this could be that first cancer gift book that could connect you to someone else who had this experience. And if you are facing your own cancer diagnosis, this book provides an overview and some practical tips about how to get through surgery, chemo, or radiation. Some women might prefer just to read these tips, get through conventional treatment, put cancer behind them, and stop there.
Book 2–The Cancer Path: A Spiritual Journey Through Healing, Wholeness & Love approaches cancer on a level deeper, as a spiritual initiation. It allows you to heal cancer from the inside-out by giving you tools to address healing your mind, body, emotions, and Spirit as you go through your traditional treatment. If you are like me, you may not want to be a passive recipient of healing. You may want to take action and create a year of treatment that leads to greater wholeness and health on all levels. I read over 60 books so that I could address these four levels of healing for you, as well as explore many discrepant issues such as diet, how your immune system affects cancer, whether emotions, thoughts and stress affect cancer, and so forth. This book is for the cancer patient who wants to do serious inner work and learn spiritual lessons along this path so she will be changed as a spiritual initiate.
Book 3–My Date With Cancer: 21 Spiritual Lessons is a gift book that explores 21 spiritual lessons from Book 2, without the more intensive research, explanation, and exercises. It has pictures and brief spiritual lessons that a cancer patient can flip through while in the hospital. It’s intended to provide love and hope, and point out some spiritual lessons that will help patients grow and be positive while on their cancer path.
Book 4–Create Your Own Cancer Path Workbook is a workbook to help cancer patients keep track of their personal experience and story. It is a journal/workbook with ideas, springboards and exercises so that they can remember how they got through chemotherapy, what and who inspired them, the lessons they learned, and other personal notes. In the end, they can use this workbook as a template for writing and publishing their own story, if they wish. This can be a legacy for their children, grandchildren, and great-grand children to learn from their story. I found writing to be very therapeutic. Research shows that there are many benefits to cancer patients from journaling and leaving a legacy behind.
Although I am a psychologist, life coach, and healer by profession, I wrote these books as a patient and cancer sister too. I hope that the wisdom, tips, and love I received can be passed on to you, to bring you healing and light on your journey.
Paulette
It was the day before my 41st birthday and I sat in my oncologist’s office at Sloan Kettering in NYC. The doctor had just given me the news: I had triple negative stage 2a breast cancer.
“Right now you have a 50% chance of it recurring,” my doctor said, “but if you do the whole chemotherapy and radiation treatment for 8 months then there’s only a 25% chance of recurrence.”
Twenty-five percent? I thought. Maybe I shouldn’t do all this then.
She continued, “We need to be really aggressive, because if a cell spreads to a different area then it’ll be incurable. That’s why we want to get it all now.”
The word “incurable” bobbed in my head.
My next thought was that I barely had time in my life as it was, without cancer. I have two kids under 4 years old (one who has a severe genetic disorder), I work full time, have a 90 minute commute, and am trying to write a book! I have no time for cancer. No thanks, I’ll pass!
But of course that wasn’t an option. No, I was on this journey whether I liked it or not, so all I could do was accept it and adjust. I could adjust my attitude, schedule and priorities, and focus on healing.
Also, the triple-negative breast cancer diagnosis worried me. This triple negative diagnosis was only given to about 20% of women with breast cancer. It was especially aggressive and they still did not know a lot about it. According to Patricia Prijatel in Surviving Triple Negative Cancer, in hormone-negative cancers, cells cannot communicate successfully because of a lack of receptors. So triple negative cancer cells cannot get the message from certain drugs that hormone-positive cancer does respond well to like Tamoxifen and Arimidex. Chemotherapy is actually more effective for triple-negative breast cancer than for hormone positive breast cancer though. For more information about triple-negative cancer you can go to www.tncfoundation.org.
And let me start out with sharing some good news that I read: 85-90% of women diagnosed with breast cancer survive at least ten years after treatment. This is a good statistic to remind yourself.
My guess is that your diagnosis might have hit you out of nowhere too, it may feel scary and it probably came at the most inconvenient time. And really, there’s no convenient—or welcome—time for such news.
Yes, it sucks. It’s unfair. You don’t deserve it and you didn’t cause it.
But take a breath, my sister. You can adjust. Many women have walked this path before you and you can too. You’re not alone.
The doctors will tell you one thing. Books will tell you another. But ultimately you will learn to trust your own voice on this path through life and death. You will find strength you never knew you had.
And if my experience or tips helps to ease your way, I will be grateful.
“If we really want to live, we’d better start at once to try; If we don’t, it doesn’t matter, but we’d better start to die.”
—W.H. Auden
As a recently diagnosed cancer patient, you may find yourself in a tailspin. Perhaps you are unsure at your diagnosis crossroads how you should proceed with treatment. You may want to consider alternative treatment instead of the conventional route. This is entirely your decision and I am only writing this book as a patient who considered taking the alternative route but opted for standardized treatment and doing my own mind/body/spirit healing treatments in tandem. I am writing this as a breast cancer patient, not as a doctor or scientist who has “the answer.”
I tried not to read too much on the Internet after my diagnosis, but after a quick Google search I found that Breast Cancer is the number two killer of women and the 2nd most common cancer. It has been busy killing 400,000 women annually. One woman a minute gets breast cancer and every 13 minutes a woman dies from it. More than 12 million women had breast cancer in 2012 and an expected 20 million are projected to have breast cancer in 2020. Clearly I was not going through this alone, even if I didn’t personally know these other women. I felt them with me and this book was my call to legacy.
I can relate if you are thinking that you to want to explore your treatment options and gather more information. As I said, the small voice inside also wanted to check out alternative healing views when I was first diagnosed. I had already seen a number of films claiming chemotherapy was bogus, and that even the doctors weren’t yet sure how to cure cancer, but I didn’t want the cognitive dissonance of looking back and not having taken the traditional route. My life was at stake and I wanted to do everything possible to live. I also knew that, whatever treatment I chose, it was going to take me a lot of energy and I wanted to choose a direction soon. You know that saying, “If you stand in the middle of the street you are more likely to be hit by a car. Pick a side.” I felt that I could choose a clear direction while still covering both sides, at least somewhat.
I asked my radiation oncologist what the medical profession thought caused cancer and he said, “We think it’s dumb luck. A small percentage may have a genetic link. We don’t think it’s caused by a weakened immune system because AIDS patients don’t have more breast cancer. Sometimes genes just randomly mutate, so it could simply be bad luck!”
For patients like myself who prefer to understand and solve problems, this response felt confusing and dissatisfying, especially knowing that my radiation oncologist was smart, open-minded, and very kind. I figured that if he didn’t know more about what caused cancer, most other doctors probably wouldn’t either. Much of this disease and its treatment is still uncharted territory.
If you decide that you want to weigh choosing only alternative treatment against conventional treatment before making your treatment decision, I would recommend reading Knockout: Interviews with Doctors Who Are Curing Cancer. In it, Suzanne Somers compellingly interviews doctors who are using nutrition, supplements, pancreatic enzymes or biologically active peptides called antineoplastons to manage and sometimes cure difficult cancers, according to her and many others. Should you want to learn more or go this route, Somers recommends specific doctors and programs. The downside of this book is that it reports chemotherapy is not usually useful and may be harmful, so if you want to do both alternative treatment and chemotherapy, this might weaken your resolve and confuse you more. I was glad I read her book after my standard treatment so I could use some suggestions therein to build up my immune system afterwards. I also figured that if I had a recurrence I could consider those approaches next. Remember, this is your life and only you can decide what’s best for you.
I decided to do the lumpectomy, chemotherapy, and radiation while addressing some lifestyle changes and rooting out mental and emotional imbalances in my energy. I also decided to try to learn any spiritual lessons inherent in this ordeal. Why not go for the whole enchilada?
But it wasn’t until chemotherapy session number five that my oncologist finally explained how they could tell whether the chemotherapy was working or not. I had asked if they could see the cancer cells—if they were dwindling or increasing. He told me that cancer cells were undetectable until they grew to half the size of a pinky (in tumor form). Until and unless cancer cells grew again, they were just going on statistical probabilities about treatment until then, since they had already removed the tumor with a lumpectomy. That felt disheartening. There was also no blood test available that would say for sure if cancer cells were carried elsewhere, or were gone.
With a triple negative cancer tumor like mine we couldn’t shut off the fuel supply (as they can with estrogen- based tumors) and they didn’t understand too much about triple negative breast cancer yet. He said when treatment was done I could enroll in some clinical research trials using Metformin, the most current research treatment for my particular cancer diagnosis. In terms of my triple negative diagnosis, he said they preferred a hormone positive diagnosis (instead of my triple negative one) because it was more benign and they had more certain treatment for that type where they could manipulate the hormones to shut off the tumor.
Maybe doctors don’t explain too much about cancer to patients because they think their patients won’t understand without a proper medical background. Some patients would also rather not know the details. I wanted to have a basic understanding of my diagnosis (without going overboard) because knowledge is power.
So what is cancer, besides being a scary sounding word? How was cancer explained to you (or was it)?
In The Journey Through Cancer, Dr. Jeffrey Geffen says that cancer involves abnormal cells that divide in an uncontrolled manner and can spread to other sites. Many doctors think that changes in cells can begin with factors like smoke, carcinogenic chemicals, radiation, viruses, abnormal hormonal activity or inherited genetic abnormalities. This can activate cancer- causing genes called oncogenes and cause tumor-suppressing genes to become inactive.
There are usually 5 traditional treatment options for breast cancer in the medical realm: surgery, radiation, hormone therapy, chemotherapy, and targeted therapy. Local therapies include surgery and radiation and they destroy or remove cancer in the breast. Systemic therapies include hormone therapy, chemotherapy and targeted therapy, and they enter the bloodstream to destroy cancer throughout the body.
Surgery can include getting a lumpectomy or a mastectomy.
Sometimes women just get surgery, surgery and radiation, or all three treatments like I did—surgery, chemotherapy, and radiation. Sometimes they may also get hormonal therapy.
Your cancer will also be graded by Stage from Stage 0-4 in terms of severity. Mine was Stage 2. Here’s a brief description of the stages: Stage 1 has a tumor localized to the area. A Stage 2 tumor has spread only to immediately surrounding tissues. Stage 3 tumor involves nearby lymph nodes and Stage 4 tumor has spread widely, including to other organs. I was lucky that mine was Stage 2 and they caught it early, on a fluke. Early detection usually means it is less advanced and easier to treat. But let’s not kid ourselves—getting cancer is a challenge, whatever stage, kind, or treatment.
When evaluating treatment options, doctors consider the type of breast cancer, the size of the tumor, the location of the tumor, your age, and family history.