SONGS IN THE KEY OF
SURVIVAL
SURVIVOR'S GUIDE
In the sincere hope that some part of my personal journey can provide guidance, comfort and inspiration to patients, caregivers and families living with cancer, I offer the following “Survivors Guide” of knowledge and insight that I learned during my own treatment, and which continues to guide me today.
HOW IN THE WORLD WILL I EVER GET THROUGH THIS?
Finding out that you have cancer will be one of the darkest and lowest points in your life. It may be the end of a road, but it’s not the end of the line. Give yourself a certain amount of time (I gave myself 72 hours) to cry, to grieve, and to be a complete victim. Ask yourself every question that can think of as to why you have been stricken with this awful disease. After that period of time has expired, don’t look back. Focus all of your strength on living in the present and bringing your own health and healing to fruition.
There is a tendency to want to approach the news of a cancer diagnosis by going online to research your situation. The problem with that approach is that none of the research that you will review takes into account who you are and what makes you unique. My advice is to stay away from the Internet as a source of general information about your specific medical condition or what you can expect to happen to you. Too often, instead of making you feel better by answering your questions, Internet research is so broad and voluminous that it exacerbates your fears and anxieties. Your medical team can provide you with whatever you need to know about your specific diagnosis and course of treatment. Place your loyalty and trust in them.
Instead of surfing the web for information, I also suggest that you find a mentor who has actually had your type of cancer and can answer some of your specific questions based on personal knowledge. There are numerous organizations that provide “peer to peer” support programs where you can communicate with someone who has experienced a similar disease or diagnosis. While everyone’s’ response to treatment is different, sharing your experience with someone who has walked a mile in shoes similar to yours is an invaluable opportunity to obtain information and insight into your situation.
Above all, remember that the same cancer experience that threatens your life can be the source for your recovery and healing. Everything that will happen to you in your treatment will come in its own time. Rather than trying to predict what you cannot control, think about everything that defines who you are without cancer. This is what makes you the unique person that you are and separates you from everyone else. Ultimately, the key to your health and healing lies within you, your heart and your soul.
THE IMPORTANCE OF BEING EARNEST ABOUT YOUR CANCER
One of the most critical actions that you can take when you are diagnosed, or while you are in treatment, is to define your experience in your own words. How you do that sets the tone for everything that will follow and how you can impact your outcome.
We are programmed by society to respond to acts of aggression with acts of force. Confront and conquer any aggressor. Far too often, people approach cancer in the same way. They are going to “fight” and “beat” the cancer as if it were some military exercise or athletic event.
In my experience, this is a mistake. It defines your disease in cancer’s terms. The outcome will be waged on the battlefield of your body where the cancer has already scaled the walls of your immune system and is seeking to take control of your life. You respond with anger, bitterness and the false belief that you can conquer this enemy. The stress that you bring on yourself fuels the fire of your cancer and minimizes the impact that you can have on your own outcome.
Instead of approaching your cancer as a confrontation, choose the path of “Two For Twenty” which defines that part of who you are that the cancer cannot attack or affect. That place, within your heart and soul, is yours and yours alone. Show your cancer how serious you are about impacting your own outcome not by “beating” it, but by the sheer power of your will and who you are. Be positive, not defensive. Instead of fighting the changes that cancer brings, accept them. Celebrate what motivates and inspires you. Feed your body with your mind. As I wrote three days after I was diagnosed:
“When the armies of the morning meet the angels of the night
All that will remain will be the love and the light
They will sanctify my soul and lay my burden down”
ACCEPTING THE LOSS OF CONTROL OF YOUR OWN LIFE
No matter what course of treatment you undergo, you will lose some control over your life. Decisions that you used to make for yourself will now be made by others, including your medical team and your caregiver. A stark reality will set in that you are no longer the sole captain of your own ship.
When this happens, remind yourself that the treatment that you are receiving is a stepping stone to your recovery and rebirth. There will be no quick fix or shortcut. The road to your recovery will not come overnight, but will be a journey of small steps forward, setbacks and perseverance in the face of adversity. At times it will seem as if recovery is light years away. But every day will bring you one day closer to that destination.
Through whatever means you choose, visualize your treatment as coming to the support of your weakened immune system to confront and overcome the cancer. Imagine the tumors inside of you shrinking in the face of your treatment and the force of your soul. Come up with some phrase that inspires you and repeat it often. For me, it was, “it’s not my time.”
In addition, don’t just show up at your cancer center for treatment in a negative state of mind or thinking about all the other things you would rather be doing. Have a plan for how you are going to spend that time in a positive way that relaxes and comforts you. I always created a special playlist of music that I listened to with headphones. Chemo and song – my personal cocktail for the cancer blues. When I walked out of the center, I felt better and more energized than when I had arrived.
FACING THE LONG AND WINDING ROAD OF TREATMENT
In every life, there are seminal moments when whatever road you have been on turns off to a road you not only have never known, but you never knew could even exist. One unavoidable result of cancer treatment is that the powerful medications you will be taking will create a daily life of ever changing moods and emotions. One minute you are calm and composed, the next you are agitated and irritable. You learn firsthand that when you wake up each morning, you can never be sure what the day will bring and no two days will be the same. This will be a profound change from your pre-cancer life when you were able to plan and control each part of your day.
As hard as cancer treatment is - physically, spiritually and emotionally - it is important to find balance and harmony in how you accept the challenges that you have to face. Instead of fighting these changes, take all of the energy you would have spent on stress and anxiety and channel it into motivation and inspiration. Let love in every form you can feel or imagine guide you through the uncertainties of each day. Never forget that no matter how difficult one day may be, the sun will rise in the morning of a new tomorrow filled with its own hope and promise.
DEALING OPENLY WITH DOUBT AND DEPRESSION
Despite all the support from family and friends, cancer treatment is a lonely experience. As cancer patients, caregivers and family members, the life we knew before cancer will not return and we have to create a new one for ourselves that is always changing and never certain.
At times you will feel as helpless as the day you were born. As much as you have tried in the past to shelter your loved ones from sadness and sorrow, the tables have turned and now you are the one that needs to be protected. As a result, every cancer patient goes through periods of doubt in which we find ourselves depressed and afraid.
To face these fears and doubts, accept the reality of your diagnosis and realize that you still have the chance to decide if the glass is half full or half empty. Whatever it is in your life that gives you energy and inspiration, keep that close to you at all times. For me, it is music. For you, it can be anything. Find something that you are passionate about and that resonates deeply inside you. It can be something you have experienced before or something that you have always wanted to try but have never done. In my case, one of the first things I did after being diagnosed was to commit myself to recording my first album. Whenever you begin to feel darkness creeping in, go to that place that is yours and follow your muse.
YOU ARE NOT A BURDEN TO THOSE WHO LOVE YOU
At some point, we all begin to feel as if we are a burden to those around us. These feelings are reinforced by the time and energy that other people expend just to help us make it through each day. No matter what you are going through, never lose track of how much you mean to everyone who is caring for you and believes in you. They do not see you as a burden, but rather as a treasure to protect and cherish. They genuinely want to help you, so let them do that. Ask for help whenever you need it. Accept the kindness of others whenever it is offered. It is a win-win situation. You feel the warmth of their compassion and affection, and the people who care about you will actually feel better by helping you instead of wondering what they can do to help.
With the strength of your own conviction and purpose, together with the help of everyone who is caring for you, you will get back to where you once belonged and continue your path to health and healing. It will take time and it will entail suffering, but stay strong, stay focused and you will get there.
WHO IS THE REAL ME?
While cancer treatment is a test of your will, it is also a testament to who you are. By bringing you face to face with your own mortality, cancer compels you to reexamine your life. What are those parts of your life that mean the most to you? What parts of your life do you regret by having tried and failed, or by not having tried at all? What parts of your life are you proud of and what parts could use some positive change? Who is the real you? Without cancer, you would not have asked these questions. With cancer, you have the chance to answer them and be the person you want yourself to be.
Redefine yourself without the restraints and inhibitions that tied you down before you were diagnosed. List the parts of who you are that you admire and respect the most. Make a separate list of where you consistently come up short in your relationship with yourself and your relationships with others. Make a third list as to how you can take the second list and make it a part of the first.
Use your cancer experience to open doors in your life that were previously closed or did not exist. For me, I took my passion for music to new levels by expanding my songwriting, improving my musicianship and challenging myself to record several albums of my own songs. I have created “Two For Twenty” to inspire other patients and caregivers in a positive and meaningful way. In whatever path you follow, be open to change and new beginnings in your life. Make the real you someone you can look in the eye and take pride in who you are. No matter what you have to face or endure to get there, remember -- a little faith goes a long way.
CELEBRATE YOUR CAREGIVER!
As cancer patients, there is so much attention on us and how we are doing with our treatment. But there is no “us” unless we each have a caregiver who behind the scenes holds everything together and unconditionally sacrifices themselves to keep us alive and well. Take the time to think about everything your caregiver does for you so selflessly with no expectation of anything in return. Whoever your caregiver may be, proclaim your gratitude and appreciation for everything they do for you and your family. No emails, no texts and most of all, no assumptions that they know how you feel. Just straight from the heart one to one. Make sure they not only hear your words, but see it in your eyes. Celebrate your caregiver in every way you can!
THE TRUE COLORS OF FAMILY AND FRIENDS
Cancer brings out the true colors in people. You will discover who among your friends and family will be there for you unconditionally every step of the way, and who will reach out no further than “our thoughts and prayers are with you.” It may be a painful reality to discover that some people that you thought were tried and true, even family members, are no longer who you thought they were.
Yet those people who get aboard your train to health and healing without a ticket and without any baggage are blessings to be cherished here, there and everywhere. While the journey to health and healing may at times be lonely, they will make sure that you won’t face any part of it alone.
THE ART OF NAPPING
No matter what type of cancer you have, you will experience increased fatigue and exhaustion. Once again, you have a choice as to how you want to address this situation. You can struggle throughout the day running on empty. Or you can make each day far more positive for yourself by learning the art of napping.
Rather than fighting the inevitable daily descent into weariness and lethargy that came from the treatment and medications that I was receiving, I decided to make each day a two part experience where I could be as energetic as possible for a half a day at a time. In between each part, I rejuvenated myself by taking a nap.
If napping is going to make a real difference for you, it has to be a part of your daily lifestyle, and not just something you do sporadically or occasionally. My suggestion, based on my own experience and which I carry forth to this day, is to take a nap every day after lunch. Excuse yourself, go to your bedroom and become as quiet and peaceful as you can. I recommend using some type of shade over your eyes to relax them and minimize any stimulation from the light around you.
By making a nap as part of your daily life, you will feel more relaxed and comfortable with letting yourself doze off and fall asleep. A mid-day nap of about forty-five minutes provides a good balance of rejuvenating you without affecting you nighttime sleep. While you may feel a little groggy when you wake up, your energy will return and you will have a quality of life and focus for the rest of the day that you would not have had otherwise.
Once you start napping regularly, everyone will know your schedule and adapt to it. It will also give your caregiver a chance to step back from being constantly on call for you and have some personal time which they desperately need and deserve. Contrary to common misconceptions, napping is not just for elderly people. It can be an invaluable part of any cancer patient’s treatment and life post treatment.
THE POSITIVE LASTING EFFECTS OF CANCER TREATMENT
Cancer treatment requires you to change the tempo of your life. Unlike the up-tempo rhythm of a healthy life, cancer slows everything down to a ballad that is day by day and at times, hour by hour. This reality will necessarily create feelings of what the late philosopher, Yogi Berra, called “déjà vu all over again.” For those of us who have had chemotherapy, we know only too well the roller coaster of receiving the infusion, having our blood counts drop dramatically and then having to wait until they come back up in order to start the cycle all over again.
No matter what amount of treatment you receive, cancer takes its toll. No one gets a free ride or walks away unscathed. But how we handle our treatment, not just physically, but mentally, spiritually and emotionally, can have a positive and lasting effect on our lives. If what doesn’t kill you makes you stronger, then we, as cancer patients, are a formidable and substantial force to be reckoned with. So even if you have relapse or develop secondary health issues from your treatment, you have a wealth of knowledge, wisdom and experience to face any situation in your life knowing that you are first and foremost a courageous survivor.
LIGHT, LOVE AND GRATITUDE
Growing up, I always remember seeing the film clip of Lou Gehrig standing at Yankee Stadium after he was diagnosed with ALS. Knowing that his baseball career was over and that his life would soon follow, he stood in front of 65,000 people and told the world that he was "luckiest man on the face of the earth." I never understood what he was saying until I was stricken with cancer. Life is not about accomplishment or acquisition - it is about blessings that we have no right to expect, but which we are given at birth as gifts to sustain and enlighten us throughout our lives. While I would never have chosen to spend much of the last two decades in treatment for cancer, I can honestly say that I am a better man for it.
We are cancer survivors, not cancer victims. Notwithstanding all of the scars across our bodies and the wars within our minds, we should always be filled with gratitude for the gift of life. With that comes the personal responsibility to never take a moment of living for granted and to always seek a higher ground of light and love. As the Beatles wrote and sang in “Across the Universe”:
“Sounds of laughter shades of life
Are ringing through my opened ears
Inciting and inviting me
Limitless undying love
Which shines around me like a million suns
It calls me on and on across the universe”