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Chemo: Secrets to Thriving
From someone who’s been there
Written by Roxanne Brown
in collaboration with Barbara Mastej and
John S. Link, M.D.
Designed & Illustrated by Barbara Mastej
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Chemo: Secrets to Thriving
Written by Roxanne Brown
in collaboration with Barbara Mastej and
John S. Link, M.D.
Published by NorLightsPress at Smashwords
Copyright (C) 2011 by Roxanne Brown
Ebook ISBN: 978-1-935254-58-4
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Smashwords Edition, License Notes
This ebook is licensed for your personal enjoyment ONLY and may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each person you share it with. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then you should return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.
A NorLightsPress eBook
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Dedication
Dedicated to the entire village it took to create this book, including Dr. Link, his new patient coordinator Stefany Montalbano, and the Breastlink Medical Group; Dr. Steiner and his assistant Susie Marble at Saul & Joyce Brandman Breast Center, Cedars-Sinai; my amazing psychotherapist Bunny Olds; the Cancer Support Community; Healing Odyssey; my fellow chemo travelers; Steve Brown, and everyone else who cheered us on during our quest to get this book printed and on the shelves for those who need it.
Pause, Take a Breath, and Prepare for Your Journey
Meet Your New Companions – They’re Here to Help You
Reach Out Selectively and Ask for Help
Chemo, Your Job, and Your Rights
Most People’s Number One Concern – Hair
Don’t Flip Your Wig – Get One FREE!
How Will I Look After I Get Chemo?
Chemo Basics to Handle BEFORE You Begin Chemo
Have Your Calendar and Notebook or Journal Ready
A Final Checklist for the Day Before Chemo
Day of Chemo Treatment: First and Subsequent Infusions
The Day After Your Chemo Infusion: Preventing Bone Pain
The Days Between Chemo Treatments
Preventing Infection and Bleeding
Steroid Side Effects: Mood Swings and Weight Gain
Will I Feel Nauseous and Vomit?
Mouth and Throat Sores – How to Prevent, Alleviate, and Stop Them
The Hole Truth and Nothing but the Truth About Your Orifices
Regulating the Toxic Waste That Comes Out of You
Flu-like Symptoms: Fatigue and Anemia
I Just Forgot What I Wanted to Tell You – All About Chemo Brain
Make a List of What Helps You Rise Out of a Downer Day and Then Do Those Things
Remember to be Your Own Best Friend and Lighten Your Load
Can You Pass the Forgiveness Final Exam?
Roxanne’s Favorite Supplements
Roxanne’s Favorite Books and Publications
Shopping List – Things You May Need
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Forward
Chemotherapy for cancer is perhaps the most feared treatment in all of medicine. Much of the fear is based on older methods and preparations. The good news is: major advances have been made in both therapies and supportive care to minimize side effects. One’s life should not be on hold during chemotherapy. On the contrary, it is possible to thrive during treatment. This little book contains some wonderful advice on how to achieve a better experience. Live well.
John S. Link, M.D.,
Breast Medical Oncologist
Oncology Medical Co-Director Breastlink Medical Group
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Preface
Not everyone with cancer is prescribed chemotherapy. This book is written for those who will take that journey. The unknown is often scary, even terrifying. I compiled this information from my own experience and the experience of many others, to educate and prepare you for chemo’s potential side effects. Knowledge is power. After reading this book you won’t be a victim of your treatment; you’ll be proactive.
We’re all different. Although some of the most common side effects are outlined in this book, please note this does NOT mean you will necessarily get all, or any of them. However, this guide prepares you with tips to prevent, alleviate, or stop many discomforts. The goal is to help you thrive – continue to enjoy life – throughout the chemo process.
I was diagnosed with breast cancer just before my birthday. Nice present! During my illness I spent hours consulting oncologists, breast cancer survivors, books, magazines, support groups, newsletters, the Internet, and more. I was often frustrated by having to wade through long texts and multiple sources to find information. What I needed to know was scattered over this multitude of sources, plus even more fliers, handouts, and Xeroxed sheets from my nurses. I felt overwhelmed and disorganized.
After my treatment ended, I decided to create a simple guide from everything I learned (much of it from my collaborator Dr. Link), boiled down and in one place. This is the book I wanted to have – a book to help people manage side effects – a book to help people manage life as they go through chemotherapy. Barbara Mastej edited, designed, and illustrated the book to ensure it is user-friendly, with one spread per subject, easy to find topics, and illustrations to make you smile.
Although my personal experience is breast cancer, I believe anyone, male or female, who needs chemotherapy will benefit from this information. However, while I’m your friend and guide on this journey, I’m not a doctor. Always talk to your medical team. They know your particular type of cancer and your chemo prescription, medical history, and medical needs.
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Regarding Our Medical Advice
The procedures and treatments discussed in this book are not necessarily the best or only procedures. This book should not be used as a substitute for professional medical care, diagnosis, or treatment. Readers should consult their own doctor or health care provider for the diagnosis and treatment of medical conditions.
Only your personal physician can evaluate your particular case and make a recommendation regarding your treatment. Do not use this book as an alternative to the treatment your physician recommends.
We have made every effort to provide accurate information at the time of publication. However, new findings may invalidate some of what has been presented. Always consult your health care provider in order to get the most current recommendations.
Consider bringing this book to your next doctor’s appointment, so you can discuss content as it relates to your particular case.
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Our intention in creating this book is to share the many things I learned that may help you throughout the chemo process – physically, mentally and spiritually. When Barbara, who loves to garden, created the image of an unfurling fern frond for the cover design of this book, she envisioned it as a symbol of a fresh start.
The first time my oncologist Dr. Link saw the fern, he called it a koru and remarked it was perfect for this book. Barbara and I looked at each other and wondered aloud, “What’s a koru?” Dr. Link’s family happens to be from New Zealand. It turns out koru is a Maori word for the iconic spiral shape representing new life and new beginnings: growth, renewal, strength, peace, harmony, support, and loving protection. Perhaps Barbara’s design was simple coincidence. I prefer to think it was something more.
We wish you everything the koru symbolizes as you take this step-by-step journey through chemo.
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Pause, Take a Breath, and Prepare for Your Journey
You probably picked up this book because you’ve been told you need chemotherapy. And you may feel stunned. I certainly did when it happened to me. I felt I had to rush. I told myself, “I’ve got to start this as soon as possible. I want to get this over.”
In my case, my oncologist Dr. Link told me I didn’t need to rush: I could pause, get other opinions – I got three total – look at options, and think about what I wanted to do with this news. He gave me good advice.
You may feel frightened. I did. I was especially fearful of nausea and vomiting. When I mentioned my worries to Dr. Link, he said, “We don’t expect that to happen to you.” Now, I was even more stunned. He said, “Lots of things can help you, like anti-nausea meds that go right in the chemo drip.” Throughout chemo I didn’t vomit and was able to nip nausea in the bud when it rarely and barely appeared.
Most chemo horror stories are based on things that happened 15 to 20 years ago when oncologists were using very few, very toxic drugs. Today many options and drugs are available, including supportive and complementary medicines as well as alternative therapies. Some are mentioned in this book.
You will find lots of help along this journey. You’re not alone. Many people, places, and things can help make your chemo experience much, much easier.
Before you continue on and begin meeting some of these people, places, and things, take a look at how far chemo has come by reading about Carol.
Carol’s Exceptional Chemo Experience:
Carol and I shared the same chemo room. She is a parole officer and had 20 years on the job when she was diagnosed. She took six months off. Throughout chemo, Carol went to the gym every day and traveled extensively between her treatments – to London, Paris, Michigan and more. Her friends and family said they had never seen her so relaxed and happy – and she agreed!
Most of us land somewhere between a difficult time and Carol’s experience. Once I learned the secrets in this book, I was able to enjoy my life while going through chemo. No, I did not go to the gym daily or travel abroad. I did take daily walks and enjoyed travelling locally.
By the way, do check with your oncologist if you are thinking of traveling.
Your oncologist will most likely want to prepare you for travel with special precautions and prescriptions.
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Meet Your New Companions – They’re Here to Help You
You’re probably feeling a bit overwhelmed right now.
Although this is perfectly natural, a few things can help you overcome this feeling. And they’re available free if you can’t afford to pay for them. I highly recommend the following three resources (I affectionately refer to them as companions). These companions will help you take charge of your illness and regain a feeling of control. They create calm in what can feel like chaos.
Get Organized!
www.Cancer101.org (1-646-638-2202) sends you an expandable file folder with dividers for pathology/test results, research, insurance, and more. You also receive a three-ring binder notebook (like a planner) with tabs for one-year calendar planner, medical history, appointment tracker, and more. All this costs only $18, but once again, it’s free to anyone who can’t afford to pay.
Know Your Rights!
www.cancerandcareers.org sends the Living and Working with Cancer Workbook. This site offers several helpful booklets available to you. You can order the booklets or download them. Yes, they are free. The contents include legal rights, taking time off, returning to work, medical history, a health insurance claim payment log, and more.
Easy Way to Communicate!
www.familypatient.com
is a website that teaches you to build
a FREE blog on their site.
This is the easiest and most fun (yes, fun) way to communicate with concerned friends and family. Through your personalized site, friends and family can check on you by viewing the blog whenever they want. You can update when you feel like it, and you won’t need to repeat the same news over and over. See it to believe it. Go to familypatient.com. Click on Demo Patient – it’s underlined in the body of text. Then click on submit under visitor login. Now click on Patient Update Reports at the top of demo page in a black box to see a sample blog. See how great it is! And, trust me, It’s easy and free.
Caregivers
Many caregivers for older and younger patients may do the organizing, keep records, and track appointments, mood swings, and energy levels. They also communicate with employers, co-workers, friends, and family. These tools help you better plan the patient’s life and your life while on this chemo journey.
We hope you’ll think of this book as your friend and guide, and your friend and guide wants you to pause often on this Chemo journey.
Resist Reacting – Pause, Take A Breath.
Think about it, sometimes you go so fast, you forget something important and you’re required to stop for a “do over.” Sometimes going fast actually takes longer.
Pause and take five minutes right now – I know you have five minutes – to call or log onto the Internet and get your companions on board for your chemo journey. This can be a long journey and you want them with you from the start.
I didn’t know about these companions when I went through chemo. They would have made my journey much, much, easier.
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1. Record and/or take notes with a friend when meeting with your medical people. Why? Because it’s hard to remember what people say when you get the C diagnosis. Doing this prevents misunderstandings and phone calls back and forth. You may want a second and even a third opinion.
2. Be discreet with whom you share the news. You may not want to be bombarded with phone calls, pitiful looks, and tales of who else had cancer and who survived and who died. If people start telling you this, you can say, “Stop, I don’t want to hear it.”
3. Get a calendar Keep track of all your medical appointments or highlight them on your regular calendar. Why? Because when the insurance company and/or medical people ask when such and such procedure took place, you will know. Knowing what happened, and when, makes it easier to decipher medical bills.
4. Don’t panic, don’t pay. Clarify your insurance coverage before getting procedures. Ask your insurance company to assign you a case manager, so you’ll have one person to deal with on a regular basis. Don’t panic when you get a medical bill, and do not pay immediately. Call the insurance company and wrangle with them about payment. Worst case – call your state insurance commissioner or contact your local media: newspaper/TV station.
5. Go shopping. Get the supplements and supplies – such as your wigs, calendar, notebook – mentioned in here before your first chemo. Then you know you have them, which will help relieve anxiety.
6. Keep a calendar, notebook, or journal. Record how you feel, both physically and emotionally once you start your first chemo cycle. This will most likely be your pattern throughout treatment. These notes will help you plan your life accordingly. For example, I was hyper and got a lot done the day before and after chemo, due to steroids. The day of chemo, I was out of it. Five days after chemo I needed two days of rest. In between, I needed a few naps during the day.
7. Ask your oncologist about support groups. These exist one on one, in group settings, online, on the phone, and more. People who’ve gone through this experience can provide a wealth of information – like the suggestions I’ve included in this book.
8. Create a laughter stash made up of funny DVDs, books, CDs, and even a list of people who make you laugh. This is a great way to get away from it all and out of yourself. Laughter can be great medicine.
Visit WWW.cancer101.org or call 1-646-638-2202 for your organizational tools including notes, a file folder, a calendar and more. Do It Now!
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Reach Out Selectively and Ask for Help
You may be in shock when you get this diagnosis. My advice is to pause and think before you announce to everyone you know that you have cancer.
Share Selectively
This is what I chose to do so I didn’t have to deal with sympathetic looks and endless questions from the entire neighborhood. You may resent people who say, “Everything will be okay.” You may not want people to treat you as if you’re fragile. By sharing selectively, I could be “normal” – not everyone was looking at me like I had the Big C. And the people I told were cool and supportive. If you want lots of calls, that’s okay. I didn’t want to keep repeating the same thing and telling the story over and over, so I used these ideas:
Prevent the Barrage of Phone Calls
–Record an outgoing message that thanks concerned parties for their call, and graciously lets them know you may not be calling back at this time, because you’re a bit overwhelmed.
–You can refer them to a website called www.familypatient.com. You may log onto this site for free and post updates/news/photos/addresses to send cards to/when you want visitors/calls. Friends and relatives can check the website daily. You can make this personal and update when and as you wish. Recent studies show that blogging can help the healing process.
–You can organize a phone tree – you call two people and each of them calls two others.
–You can send out updates via email.
Ask for Help – People Want to Help You, It’s Gratifying for Them
–Ask as part of your update on www.familypatient.com.
–Set up a calendar on www.lotsahelpinghands.com showing times you might need specific things, such as rides or help with tasks.
–Be specific. People do not know what you need, so be clear:
–Can you give me a ride to chemo?
–Can you send leftovers this way?
–Can you prepare a meal for me/us?
–Can you help me do light housekeeping, laundry?
–Can you please pick this up at the grocery store, pharmacy, hardware store for me?
Tell Your Friends and Relatives That You’d Still Like to be Included in Regular Activities
If you’re not up to it, you can always decline, but you’ll have the option to participate. For me, continuing my regular activities in a modified version was therapeutic. I believe it contributed to my healing and a more positive outlook.
Institute the Honesty Policy and Keep it for Life!
Be honest with people. Tell them “I may not return your phone calls. No, I don’t want to go out. Please don’t tell me about everyone you know who has had cancer. Let’s just talk like we normally do. I want to go for a walk – do you? Can you help me with...?”
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They’re watching you. So remember: how you respond to your diagnosis and treatment will affect how your kids react. No, this doesn’t mean you must always be brave and stoic and never let on you’re having a hard time. It’s okay for kids to see you cry or be down and vulnerable. That’s life, and this is how your kids learn about life. We aren’t always happy. Things don’t always go well. But despite that, we go forward, and usually a better, brighter day comes along.
Be truthful and at the same time Keep It Simple and age appropriate with the information you give your kids. If you don’t tell them what’s going on they will make their own assumptions and conclusions, and that will truly be scary. You’ve heard how huge that monster under the bed can grow and what it can do. Clarify what’s going on and what can be expected:
–Cancer is not contagious. Explain to them what it is and how it works.
–Cancer is not anyone’s fault – definitely not their fault.
–Do tell them what’s going on. “My hair will fall out from the medicine. That’s how strong the medicine is while it works to make me better. Later my hair will grow back, possibly better than ever – thick and curly.”
–Do let them help you – make art for you, tuck you in, bring you a glass of water.
–Do let them be involved in the process – “Look what Mommy got as a gift from LOOK GOOD FEEL BETTER. We can play with this make-up.” LGFB helps with and gives you free make-up.
–Do try to maintain a normal routine as much as possible – pancakes on Saturday, a family movie at home on Sunday. If you can’t go to a soccer game, maybe their favorite Uncle Fred can attend.
Spouses, caretakers, kids, and you, all need to be treated with loving kindness. It won’t be perfect. And yes, you will still have fights and arguments. Duh, this is stressful. So I ask you to Pause and Think before you speak. You probably won’t always do this, so aim for progress, not perfection. Which reminds me, do practice your spiel before you speak to kids (and others, as a matter of fact, such as your boss, friends and co-workers).
Inform the other adults in your kids’ lives about what you and your family are going through, so that they can be prepared to offer support.
Families and kids can get support at:
www.FamiliesCan.org and www.
KidsKonnected.org
or call 1-800-899-2866.
And remember, you and your spouse – along with your kids – may all benefit from some professional help.
Now is the time for Love, Love, Love, Love, and more Love, LOVE, LOVE…
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Chemo, Your Job, and Your Rights
Many people continue to work throughout chemotherapy. Others don’t. The folks I met in the hospital and in my support groups had varied approaches.
–One person I met said she did not tell anyone at her job. That’s right – NO ONE.
–Another person had a wig made that matched her hair exactly. She told only her boss.
–Other people chose to tell everyone they knew.
–One woman said her co-workers covered for her when she needed time off and even donated sick and vacation days to her. She felt very blessed.
–My friend Laura told her co-workers and was then asked to please take disability, because she looked too “strange” (pale with no hair) to fit the firm’s designer image. In the end, she LOVED the time off.
–A couple of people said that they arranged for a flexible work schedule.