November 2005 :::
Q. I have just been diagnosed with a serious illness. How do I get through the waiting process prior to surgery? How do I live with such an uncertain diagnosis? I find myself fighting back the tears.
A. Times of uncertainty are times of emotional roller coaster rides. We are not sure whether to laugh or cry, to plan or wait. It is a time when we tend to put our lives on hold and hope and pray all will be all right. Sometimes this time goes fast, with a doctor who is communicative, and sometimes it can draw on and on, with a doctor who has an unorganized medical staff. But either way, you are entitled to hear your test results and plan surgery in a prompt fashion, and you are entitled to speak with your doctor about your fears and concerns for hope and reassurance.
When we receive a diagnosis of cancer for example, we feel waves of many emotions. At first, many feel shocked and disbelief. How could my body betray me so? Were the tests wrong? Maybe my doctor had the wrong results given to me? In a matter of hours, one's life is turned upside down and inside out. What results is confusion, fear and denial. All these feelings are intertwined and intense. Sometimes it is hard to sort through them to know exactly how to take the action needed for the diagnosis.
As shock and disbelief begin to dissolve, one may begin to look ahead. Will I die? Will I live? Will it be painful? Will I require chemo? And then comes practical thoughts of telling family members and making arrangements for the upcoming surgeries and doctors appointments. No closer to acceptance, one feels isolated and alone in their thoughts, lonely in their own bodies. It is at this point that reaching out to your doctor is a good thing to do. If you haven't already done so, arrange a time to discuss your case and speak with the doctor about the plan ahead. No doubt your primary physician will be referring you to a surgeon and a specialist. Draw together a list of questions and concerns, and write them down concisely. Bring these questions to all your doctor visits.
While waiting for a treatment plan and a prognosis, one may find this the hardest time. It is what I call the "anything goes passage." What has happened to you is not from your world of normalcy. Therefore, normal behavior or response is neither required nor well defined. You must find your own comfort level of normalcy. Your world closes down and you find yourself looking down by your feet in panic, instead of out at the world. Try to look up from your fears and look out at the world. There are many people like you out there, who have beat cancer, and are fighters. Learn more about the fighting spirit. Read if you can, anything of interest to you. Find comfort in the essence of simple things: nature, flowers, animals, your family, your loved ones and the comfort of your home. Concentrate on smaller things, not the bigger picture. It will all come together in time, and you must be patient with the time you have now while you wait.
Today a serious diagnosis is not a sentence to death. Most forms of cancer are treatable with good medical care. If you allow yourself to feel what you feel, live one-second at a time, and give yourself permission to continue to live your life, you will still see the rainbows and feel the love that surrounds you. Living during a time of uncertainty is indeed a challenge but is do-able by concentrating on the simple things in your life, and not allowing your thoughts to become overwhelmed with future plans that have not yet been made.
And if things are too "up in the air" for you, take action. Meet with your doctors, learn about your diagnosis and find others who have persevered and been successful with their treatment. Most of all remember that "anything goes" in terms of emotional reactions. These are uncertain times for you. Given that fact, your reactions will also be just as uncertain. Allow yourself the luxury of crying, whining and talking through your fears.
When you are ready, reach out by putting your efforts into helping others if you can. You will see that the energies this brings you, will give you more inner strength to move forward. And please keep in touch. I wish you healing and I will always be there to listen.
Q. My doctor doesn't seem to care who I am. What I mean is, I am sure he sees me as a number and not as a human being. He is a good doctor, and knows his field well, but I have a chronic illness that will require ongoing medical care from him the rest of my life. I wish for him to know me and to perhaps add him to my support system. He is quick and often leaves the room before I have a chance to say anything. What can I say to him to make him see me as human? And how can I get more time with him in order to say it?
A. I have learned through my own "story" that you must make yourself known to your doctor. Doctors are task oriented and unaware that the chronically ill patient wishes to be seen as an individual with very unique needs and concerns. Due to the "sandwiching" of patients between healthcare insurance and medical care itself, the health care system is bent toward quick fixes and not the chronically ill. Many doctors enjoy the satisfaction that treating "well patients'" brings with its instant gratification, as opposed to longer treatments that wax and wane.
But hats off to the doctors who are glad to see us after a few weeks to months and in between who want to learn of our progress. Hats off to the doctors who are looking us square in the eye and notice the tears we may shed. These are the doctors that we want to recommend to friends and relatives and people in need. These are the doctors who take a moment to know us better instead of taking that same moment to judge us.
The variable we rarely have in today's health system, is time. Through your own planning you can set up an appointment that requires more time by talking with the doctors office. During this appointment share with the doctor how you function and how you want to function. Familiarize your doctor with your long term and short term goals. Ask the doctor about himself, and be truly interested. A relationship with a doctor, as with any human being, is one of give and take. You must build it as you would build any structure that is strong, carefully, one brick at a time.
If scheduling the time and getting it still lacks a connection between you and your doctor, and you feel you have given him more time than you can afford, find someone different. Look for someone who connects better with you, and knows what you are after. His goals and your goals should mesh, ultimately leading toward a higher level of functioning for you. If he does not know enough about your illness, he may send you to experts for their opinions, or volunteer to do some research on your behalf. Saying "I don't know" is not enough. He can find a direction for you to go toward without abandoning you.
Hope is elusive as my doctor says, but I recently read a good book written by an oncologist Jerome Groopman, called "The Anatomy of Hope". He speaks about the hope for healing that is inside each and every one of us when we become ill affecting outcome in cancer. Some of us find that hope and to others it remains hidden and inaccessible. The trick to keeping your spirit alive through chronic illness is being able to access that hope. It is my belief that ultimately the best of doctors as a partner in your care, will assist you in that process. But you must build this relationship one brick at a time until it is strong enough to take this leap of faith.
Dr Levine's response: Call the office and explain the need for more time to discuss your condition. What you do not want is to schedule a routine appointment and be upset because you have more to discuss than the scheduled appointment time allows. If they cannot schedule more time, it is likely that the doctor cannot spare the increased time you desire. The issue of your perception of the doctor not seeing you as a ‘human being’ may or may not be resolvable with more time for the visit. Joel S. Levine, MD, FACPProfessor of Medicine and Interim Head Division of Gastroenterology-Hepatology, Senior Associate Dean for Clinical Affairs University of Colorado School of Medicine.
We thank you, Dr Levine for your monthly contribution.
Q. I am a caregiver and you don't talk much regarding caregivers. Why not? We have needs too. Any advice on that?
A. . Oh such a good question! And yes, I have overlooked caregiving in my column, I am sad to say. However, I plan to add a caregiver's corner to my next column.
Caregivers are like angels to their loved ones. They are there with a healing hand to give us what we need when we need it; be it dispensing our medications, making our meals, taking us out, and sitting with us when we are afraid and in pain. Their love for us is unconditional. Often they go unnoticed and under appreciated. This is not fair to them. They are "silent heroes" and often give up much of their lives seeing to it that we can live ours.
My husband became my caregiver. He has given much of his life to steer me on the road to healing. His words are loving when I cry, and his heart is with me when I am afraid. When I do badly, he remembers my medications and offers them to me. When I am too sick to even think about calling the doctor, he makes the call.
Yet he too has a life. He has needs to explore the world, create friendships, develop and nurture hobbies and walk on his own individual life path. It took quite a while for me to step outside of my own pain and fears to consciously realize that he has a life equal to mine and that I was not nurturing his freedom "to be" as he had done for me all those years.
Caregivers are people too. They were not bred to be caregivers, circumstances created this role for them. You and I all know that if they had to choose, they would choose freedom from illness in a life with us. We did not choose illness, yet they chose to be by our sides.
Nurture your caregivers' interests. Encourage your spouse or caregiver to continue friendships and create new ones. Do not allow your circumstances of illness, to imprison him or her. For he is not a possession or "right" or something to take for granted or advantage of. Your caregiver is a person with his own set of needs, wants and desires. Create an environment where your caregiver is not afraid "to live" just because your life may be physically limiting.
Our caregivers during times of pain and sickness, are our heart and soul. But they are individuals and human beings just as we are. Yes, they can choose to walk away from us, but they have chosen not to. And yes they don't have to live with our physical pain, but many of them would tell us, that watching one you love deal with illness is a quite a painful endeavor.
To all out there with wonderful caregivers, reflect on this and give them more of your heart. We are not ill out of our own choice, but remember that they have chosen to sit beside us.
Life-raft concept of the month:
"When you are on a journey, it is certainly helpful to know where you are going or at least the general direction in which you are moving, but don't forget: the only thing that is ultimately real about your journey is the step that you are taking at this moment. That's all there ever is."
- Eckhart Tolle
The reaction of one in the early stages of illness or pain is one of fear. What is happening to me? What will the doctors do to me? Will there be lots of tests? Will the tests be painful? How long will I have to wait to find out what is wrong with me? Is it something serious? Will I die? Will I be like this in pain the rest of my life? Will I be able to care for my children? Will I be able to care for myself?
So many questions. Questions that lead to other questions. And questions that indicate obvious fear and discomfort with uncertainty in what lies ahead. Finally fears of nonexistence and helplessness. What do we do with all these feelings? How do we keep them from poisoning our relationships? How do we keep them from frightening our children? How do we hang on to those we love? And finally, how will we exist through this process?
Awareness of the present is your most important tool. Awareness of our feelings, the facts, the momentary events and our surroundings. There may not be comfort in every moment that we live, yet we must learn how to create comfort in these moments for ourselves.
- Surround yourself with the things you love. Make your home warm and comfortable. Wear fuzzy slippers until you have to go out. Keep your clothing soft and cozy.
- There are foods some call "comfort foods". Think about what these things may be. Unless they are foods that go against your doctor's diet or food plan, try to feed yourself one small portion of your favorite foods each day. Something that you look forward to. A small treat for you. But keep your healthy diet going. Now is not the time to create a crash diet. Now is the time to treat yourself well.
- Rest. Take time to rest every day. Puff up your pillows and have warm blankets available to you. Make resting a time of recharging so that you can wake up the best you can be. A recharged you.
- Listen to beautiful music. Listen to music that gives you goose bumps or cheers your soul. Play it softly when you are doing your chores. Let it be a special treat for you. Let it soften the moments for you.
- Add humor to your life. Even if you don't feel like laughing, try to laugh. Try to stay away from violence or television that creates more fear. Watch comedy shows and funny movies.
- Wear clothes that hug you, make you feel warm and cozy. Wear clothes that you find soft and pleasing to your touch. Wear colors that are warm and soothing, like pale blues and pale pinks-all proven to add serenity and calm to a wounded spirit.
- Keep medications for pain handy. If you feel pain coming on, and you have been prescribed medication by your medical doctor, do not wait until it is in full force before reacting. Pre-act, simply means to treat yourself at the first sign of pain so that it never gets into a severe state.
- Accept this moment, do not fight it. Use you energy to take steps forward on your path toward wellness. But do not spend time fighting what is right now. Instead take action so you can advance on your path.
- Try not to focus too hard on the future. With little information, its impossible for you to know what the future holds. Instead live the moment deeply. Love your family. Smile and laugh with your children. Reassure your husband or wife.
- Allow yourself to be inspired. Read inspirational material. Read authors that make you laugh, make you happy and give you hope. If you would like a list of non-denominational inspirational books, email me. I would be more than happy to share my list with you.
Create a plan. Sit with your support system and create a plan of action. Look at your situation. What do you want to find out? What do you think you might do next? Do you have an appointment with your doctor already set up to go over the plan? If not, make one. Write your plan down on a sheet of paper and tack it to the wall somewhere you can see it. And when you feel scared and helpless, look at your plan. Its a symbol of action. And taking action helps you to avoid depression.
But also remember to let this be a time for the present moment. Put fear away through living in comfort and nurturing yourself. Add laughter when you can. Be with your family with presence and love. Even though these are trying times, this too, now, is part of your life. It may be a time of uncertainty, pain and fear, but learn to live it the best way you can by making the best of this moment.
I assure you, even with chronic illness, better days and rare opportunities await you.
Let us walk down this healing road together.
Always with peace and love,