Date: February 10, 2005
by David Arenson
Editor’s Note: David Arenson is a former journalist and the co-author of two books with his wife, Marilyn Werden. He was diagnosed with CLL during a routine blood test while visiting the local emergency room. Neither he, nor Marilyn, will ever forget the moment when the nurse marched in and asked, with a certain degree of panic, “Have you ever been diagnosed with leukemia?” It was the start of a new chapter in David’s life, one he never expected to have to write. In this article, David shares some ideas for overcoming the shock and fear common to new patients and for learning to cope effectively with CLL.
The opinions expressed here are those of the author(s). CLL Topics does not necessarily share or endorse these opinions.
There are certain events that leave an indelible mark on our memories. I was just seven years old when John F. Kennedy was assassinated, but I remember where I was when I heard the news. And like most Americans, I doubt I’ll ever forget the morning of September 11, 2001.
Nor will I forget the day, nearly two years later, when I found out that I had CLL. September 3, 2003, was the date of my own private catastrophe, after which I experienced the shock, grief, and confusion that all new CLL patients must contend with.
It took some time for the news to sink in, and during the weeks following my diagnosis I instinctively knew that I was not ready to cope as well as I needed to. But as I began to accept that my life’s journey had taken an unexpected turn and that I was now a cancer patient, I knew that I wanted to become a successful one. I read about people whose outlooks and attitudes had been instrumental in helping them make the right choices. I learned that medical literature is full of examples of people who have used their innate gifts, in combination with treatment, to overcome their cancers. Knowing that CLL is chronic, I did not expect a cure. But I figured that I could benefit enormously, on a lot of levels, if I threw my heart and soul into the battle.
So I began my fight against CLL by coming to terms with what it meant for my life. This required that I look inward before I could look outward. I knew that for the most successful outcome, I needed to marshal all my inner resources – mental, emotional, and spiritual – to take on the tasks ahead.
This was made all the more urgent by the fact that my then-oncologist was insisting that I start treatment immediately – barely a month after diagnosis – with a drug that I did not feel comfortable using. I knew I was not ready to make such a major decision until I had developed some basic coping skills, so I told my doctor to wait. She wasn’t pleased, but I knew that “going along to get along” wasn’t the right way to approach a life-and-death issue. Eventually, after I did learn to cope effectively, the first thing I did was find a new doctor.
Most CLL patients have the “luxury” of a longer watch-and-wait period than I did, but tough decisions will eventually confront all of us. These are made more difficult by conflicting information and the need to balance many different considerations, all of this in a world of constant change. There is an old Chinese curse: “May you live in interesting times.” We CLL patients today are thusly cursed, or blessed, depending upon how you look at it. The one thing we can count on is that an uncertain path lies ahead, and it stands to reason that one’s ability to navigate it can make the difference between success and failure.
If you are mentally and emotionally ready, you can make better decisions; your choices will not be clouded by fear or wishful thinking or blind trust in the judgment of others. You will have the strength to become informed and the set of skills necessary to use that knowledge wisely. And you can go to bed at night with the satisfaction that you have done your very best. At the end of the day, in CLL as in life, is it not better to have given your all?
The path to coping effectively has been paved by thousands who have gone before, and I found some very helpful resources along the way. Making the best use of them required concentration, perseverance, a sense of trust in myself, and a faith in the larger forces at work in the world as I perceive them.
The hardest part, of course, was coming to grips with my emotions, facing my fears and my mortality. There were times when I cried on my wife’s shoulder, literally. It helped me to know that I was not alone in dealing with these issues, that others in similar situations had felt the same things. Through reading books, meditation, visualization, journal-writing, and talks with my wife, I was able to work through the bleak and troubling days. As I did this, I became stronger and – much to my surprise – happier.
It’s an ongoing process, of course. Coping with CLL may get easier with time, but it is not always easy. A new test can reawaken old fears, a little ache or pain can be magnified into a major, unsettling concern. Unless you’re a zen master, you’re unlikely to always be in a place of serenity when it comes to cancer. But you can be there (or close enough) a great deal of the time, and you can go on with your life.
The steps below sum up my experience. I offer them to newly-diagnosed patients in a spirit of humility, knowing that not everything works the same for everyone. My hope is that these ideas will help you discover your inner strength and resolve, and will help you create a mental and emotional environment in which you can tackle the details of your disease with confidence and hope. Both subconsciously and consciously, you can create an atmosphere for healing.
This is a time to be gentle with yourself, to treat yourself lovingly, to create a positive atmosphere as you begin to come to grips with your situation.
You know what I’d almost forgotten before my diagnosis? What a gift life is, and what a joy it can be. A diagnosis of a serious disease is a sobering reminder that one is always foolish to take life for granted. Some people never learn that lesson and never get out of life what they might have otherwise.
This is a time to reconnect to life – to the people you love, to the things you love to do, to the little things every day that matter most. Read things that are uplifting and encouraging, eat things that are good for you, participate in activities that fulfill you, and be with people who care about you. I remember one day eating a fresh Macintosh apple and listening to Brahms and realizing that life was not entirely bad, even with CLL. Another time my wife and I took a long hike; the beauty of the canyon where we walked, and the company of the woman I loved, again reminded me that I was, despite my CLL, a lucky man. In these ways, big and small, I affirmed life and found comfort in those things that make it worth living.
By all means avoid the negative. You are feeling vulnerable now, and there’s no need to exacerbate the situation. This is not the time to take on the burdens of the world, whether it be a family issue or something in the news. And stop sweating the small stuff. Your focus should be on what really matters: taking care of yourself.
Avoid negative people. Steer clear of those who bring you down or who make you feel uneasy. There’s no law requiring you to tell people you have CLL; use your intuition to decide whom it’s safe to tell, and when. By all means avoid ignorant know-it-alls or toxic people who would likely find your cancer to be an inconvenience in their lives. (And if there’s a negative voice in the back of your own mind, say “cancel” whenever it starts talking. Say it a hundred times a day if you have to; it works.)
You can now begin to put into perspective what is truly important, so concentrate on the things that you love: your mate, your child, your pet, your garden, your favorite music, or whatever it is that makes you happy. By celebrating life on a daily basis, you’ll realize that there are good things everywhere you look. This will help you develop a powerful sense of gratitude that will leave you certain in the knowledge that, even though you have CLL, life is still a beautiful gift. And this realization will give you strength.
You need a good friend and advocate now, someone you can lean on emotionally, who can act as a sounding board, who can be at your side when you go to the doctor, who can help you through the maze of research ahead. For many of us this means a loving spouse or partner, or a best friend or family member. Now is the time to assert your right to some quality time and attention. (But as you do, keep in mind that your diagnosis might be almost as upsetting for someone who loves you as it is for you. Make sure you give them some personal space and opportunities to cope with their emotional reactions.)
If you’re alone, or there’s no one you feel comfortable relying on, don’t despair. There are cancer support groups in almost every community. Many are sponsored by hospitals and are led by experienced facilitators. You may also find cancer survivors who volunteer for one-on-one mentoring with new patients. Or take a look at Dr. Bernie Siegel’s eCap (Exceptional Cancer Patients) site for a group leader near you: http://www.ecap-online.org/pract.html.
Among its many services, the Leukemia and Lymphoma Society (www.leukemia.org) offers monthly family support group meetings in most major metropolitan areas. The LLS also has a telephone program called First Connection, in which patients and their advocates can share experiences with someone who has been through a similar situation.
If you can’t hook up in person or by phone, consider internet CLL groups such as the Association of Cancer Online Resources (ACOR) list (http://cll.acor.org/). You can post messages there and will find friendly and supportive people. But be careful if you are sensitive to scary stories, as most newbies are. Inevitably you will encounter people who aren’t doing well or who have negative attitudes, and the last thing you need is to start panicking every time you read the daily digest of posts. You may want your advocate to screen the messages and post questions for you; it took me four months before I felt comfortable reading ACOR by myself.
Although ACOR is the biggest group for CLL information and support, there are others. The Leukemia and Lymphoma Society website offers several bulletin boards, including one called “Newly Diagnosed.”
We all get very busy with unimportant stuff, and then life intervenes. You need time now, to study, to reflect, and to start to get a grip on the disease and what it means for your life.
Don’t make excuses. No matter how busy you are, you can find an hour a day. After all, watching one less TV program won’t kill you, but CLL might. You may find that you have to put your own needs ahead of those of your family or spouse, but you are certainly entitled to do so. There is nothing more important in your life right now; love yourself enough to do it.
If you can, set a certain time aside every day when you can retreat to a private, comfortable spot and do your readings, meditations, and so on. After awhile, you’ll enjoy the opportunity to escape the daily grind and reconnect with yourself.
And speaking of time, do not let anyone, especially doctors, rush you into making a decision that you are uncomfortable with. I am eternally grateful that I did not take my first oncologist’s advice. There is almost never a reason to treat CLL immediately after diagnosis. So make time to prepare yourself, then take time to learn what you need to know.
I mentioned in my introduction that this path has been paved by many who have gone before. Now is the time to take advantage of their wisdom, and the two books below provide an excellent, structured way to do so.
I started with Getting Well Again by O. Carl Simonton, Stephanie Matthews, and James Creighton. In the 1970s, these researchers began to notice that cancer patients who had learned to cope with their diseases and who had positive outlooks lived longer than those who did not.
Getting Well Again gave me a foundation for understanding cancer and its role in my life, as well as positive, life-affirming ways to cope with it. Among these are visualization techniques that I use to this day. It took me more than a month to finish the book because I kept a journal as I went through it and did every exercise they suggested. Sometimes the book called upon me to dig deep into some emotional issues, but as they say, “no pain, no gain.” Ultimately, I found that I was able to summon some qualities in myself that had lain dormant, and these have helped me enormously. The following link to amazon.com discusses Getting Well Again in greater detail and offers a peek at the first several pages.
Love, Medicine, and Miracles by Dr. Bernie Siegel – who was originally inspired by the Simonton program – is positive, highly readable, and full of insights. Of particular interest are his section on the healing partnership between doctors and patients and his discussion of the three types of cancer patients and how their outlooks affect the courses of their diseases.
You can order meditation tapes and other aids through Simonton’s website (http://www.simontoncenter.com/index.html) and through Siegel’s (http://www.ecap-online.org/). Siegel’s website also has a discussion board where you can post messages; sometimes he answers them himself. Both websites offer retreats, if you have the money and feel the need for guided immersion in the material.
A helpful book in general is 50 Things To Do When Your Doctor Says It’s Cancer by Greg Anderson, a lung cancer survivor who was sent home to die 20 years ago and who is still here to tell about it. His book contains one of my favorite quotes, which I wrote down on a piece of paper and carried with me all during my newbiedom: “Panic is a projection that is not real. We are not just our fears. Our fears do not necessarily determine our future. This is significant.” (And while I’m not a newbie anymore, I still keep it handy.)
Whether you are religious or spiritual, agnostic or atheist, you can still celebrate creation and come to some understanding of how you fit into the cosmos. Feel your connection to the life force that pervades our world. As near as possible, achieve a place of spiritual serenity in the middle of the storm. You’ll be in a place of strength if you do, one that will aid you as you go forth to do battle with CLL.
Looking at the big picture, so to speak, helps keep things like CLL in perspective. CLL may or may not kill you. But – hello! – you’re not immortal. Death will come, somehow. So live life to the fullest, one step at a time, one day at a time. And do not take your disease personally, for in the ebb and flow of life, all creatures encounter the bad along with the good.
If you’ve found this website, you’ve found the leading source for information about the disease. CLL Topics is vast and encyclopedic, which may be a bit intimidating at first, but you will eventually find almost everything in it to be useful. A good starting point for new patients is the article entitled A CLL Primer, followed by What Type of CLL Do You Have? You may also want to look at Diagnosing Your Doctor, since choosing a good doctor is one of the first steps you will need to take. If you are facing a treatment decision in the near future, consider Shopping for the Therapy That Is Right for You and Are We There Yet?
If you find CLL research to be scary at this point, have your advocate do it for you.
Do not start flooding yourself with information before you are ready to process it; it’s OK to take baby steps, and it’s essential to start out by emphasizing the positive. Don’t feel inadequate because there are a lot of new things to cope with that seem daunting. We were all confused at first. (It took me a good week or two before I could properly pronounce the word “lymphocytic,” and I still stumble over “epigallocatechin gallate.”)
Other sources of information on the Internet include ACOR’s Leukemia Links at the ACOR CLL chat group and the U.S. National Cancer Institute’s site at the NCI Treatment PDQ reference for cancer patients. The NCI also offers a “health professional” version of the information, and the more you learn about the disease, the more you’ll want to know what the doctors know.
As this article is written, one of the world’s leading experts on CLL, Dr. Terry Hamblin, is regularly answering questions on the ACOR list. Susan Leclair, a professor of medical laboratory science, also answers technical questions on the list. Their posts are archived at Professors' Posts. Finally, the Reference section at CLL Topics has a number of other helpful links.
You are going to run across statistics that are confusing and intimidating. The word “survival” can be scary when seen in the context of CLL studies, but that’s the verbiage researchers commonly use. While statistics are essential to medicine, when it comes to the subject of patient longevity, they are often out of date or incomplete.
First, the statistics that are out there on CLL patient survival largely date from the 1990s and even the 1980s. The farther back you go, the fewer effective treatments there were. That is changing now, faster than you can say “apoptosis.” People diagnosed today have a much better array of treatments to choose from than those diagnosed ten years ago. While we cannot know how well today’s treatments will work in the long run, it stands to reason that many of them should lead to an increase in longevity when compared to what was done in the past.
And the universe is not static. Given the current explosion in CLL research – which is being driven by our ever-expanding understanding of genetics and how things work on the molecular level – it is not inconceivable that in another ten years there may be a cure or something close to it. Articles updating that progress are constantly being posted right here at CLL Topics.
New tests, which can give a much better idea of who should and should not be treated, may also change the statistical picture. The notion that “one size fits all” in CLL is out of date and even dangerous. Tests such as IgVH mutational status, ZAP-70, and FISH can provide a more complete picture of an individual’s disease and what treatments might be appropriate. A targeted, risk-based approach to treating CLL may increase survival for those who need treatment and spare those who don’t from toxic side effects.
Another point to note is that studies often involve groups of patients who have been treated extensively with chemotherapy in the past. By the very fact that heavy pretreatment can take its toll on the body and render further treatments less effective, these patients are less likely to live as long as chemo-naïve patients starting the same protocol. And you, being a newbie, are chemo naïve, ready to start from scratch, perhaps with a relatively safe monoclonal antibody or a new, less-toxic drug.
Finally, never forget that there are always people who will do much better than the statistical average. One man, Tom McCune, has been cured through a bone marrow transplant, and transplants are showing an increasing success rate to date. There are even a few cases in which patients appear to have experienced spontaneous remissions. There are people alive today who have had CLL for 25 years or more. (Dr. Hamblin has told the story of a woman who died at age 105, having had CLL for 30 years.) And there are people who have been in and out of therapy for 10 or 15 years who are still going strong.
So always remember that you are a person, not a statistic. The choices you make and the attitude you adopt can have an enormous effect on how long (and how well) you live, CLL or no. And keep in mind that, all the while, science is working hard to improve your chances.
For more on statistics, you can read Steven Jay Gould’s “The Median Isn’t the Message” at http://www.cancerguide.org/median_not_msg.html. Tom McCune’s story can be found at http://www.mccune.cc/CLL.htm.
There was a post to the ACOR list by a woman whose husband has had CLL for several years. She was still acting as his information-gathering surrogate, and she said his attitude toward the disease was that he didn’t want to know anything about it because that knowledge might “destroy his hope.”
I certainly understand a newbie’s desire not to be exposed to potentially scary information. My wife acted as my research filter while I did the work in Getting Well Again. She would preview articles or sources of information and refer me to those that discussed the disease without bringing up things that might exacerbate my fears.
But there is also a time to step up to the plate and begin to take on the research yourself. Allowing years to go by without growing strong enough to take your head out of the sand will leave you woefully unprepared when the time comes to take action.
Once I emerged ready to tackle the subject with focus and determination, I bravely began to read everything. And sure, there were some scary moments. But the more I learned, the more genuinely hopeful I became. I began to see that the pace of change these days is truly revolutionary. I saw where diagnostics and treatment are headed and how my test results fit into the picture. I saw how more new therapy choices are coming online and how discoveries in genetic research and immunology are holding promise. And I came to be eternally grateful for the internet, where the posting of detailed information is making it easier for patients to have a meaningful role in their treatments and to keep abreast of the latest trends. Through all this, I became optimistic that I could survive my CLL by making smart choices today and by taking advantage of new treatments as they become available in the future.
The end result of my efforts is that I ended up with real hope, which is the opposite of wishful thinking. Real hope is born out of coping effectively, of using your head and your heart to find the best course. This means becoming strong enough to survey the situation and find a way through it. Real hope is what you have when you have found a realistic path to a better future. And real hope, which will give you confidence as you battle your disease, cannot easily be destroyed.
This is a brave new world you’re taking on, so pace yourself. Find the balance between learning to cope with CLL and other things in your life. Single-minded obsession can lead to burnout, and life is to be enjoyed, so there is no point in being single-minded about anything. To best cope with CLL, it is sometimes necessary to not cope with it at all.
Do some things that you enjoy – go on a bike ride, have a great dinner out, spend a few hours in the company of a good book or a good friend, or just watch some mindless television. Rest and refresh yourself.
At the same time, remember the task at hand. Pace yourself, but keep going forward.
Now is the time to stop taking your body for granted. Start making some changes in your diet. Cut out as much processed sugar and junk food as you can. Consider a chemopreventive regimen involving EGCG (a green tea extract) and other items. (For more information, take a look at the Topics articles in the section called Phytochemicals & Chemoprevention.)
And start exercising. Among other things, exercise raises endorphin levels and creates more energy and a greater sense of well-being. Within four months of diagnosis, I lost 20 pounds, and I felt better than I had in years. Not only was this good for my body – it probably added time to my life by lessening risk factors for heart attack, stroke, and diabetes – it was good for my mind.
Accept that your new condition may require some changes in your lifestyle. For example, be very careful about your exposure to the sun. There is a great deal of evidence that CLL patients are highly susceptible to squamous cell skin cancers; these can be far more aggressive – even life-threatening – in CLL patients than they are in healthy people. (Read the Topics article Are You Dying to Get a Tan?)
Finally, avoid the temptation to retreat into binge eating (or drinking, or drugs) as a way of coping. Now is the time to give up those sorts of habits – and to give up smoking, if you smoke. Mere habits should not interfere with your larger purpose: preserving your life, and truly enjoying it. Again, love yourself. It is time to get serious, to do everything possible to affirm life and create a healing atmosphere. Respect your body, and it will respond as well as it can.
By this I mean: Get ready to make really big changes in your life, if that is what you decide you need to do. As part of the process of coping with the disease, you may get in touch with hidden feelings, cherished goals that you have put off, and so on. You may find yourself wanting to make a career or personal change, or suddenly seeing things in a different light. This is OK, this is positive, this is life-affirming. We are given the gift of life and the inner resources to make the most of it. All too often, we lose touch with these things.
There are those who say that the diagnosis of a serious illness can be a transformative experience, that it has many positive aspects along with the negative. I have found this to be true. Now, as you get in touch with what truly matters in life, you can do great things, and you can set the stage for healing.
Gradually you will go from small steps to a more confident stride, and it will become easier to cope. Once you have gotten a good grip on the mental and emotional aspects of the disease, you can begin to deal in earnest with issues of diagnosis, prognosis, and treatment. When that time comes, there are two things you really should do next:
First, educate yourself more fully about your particular disease. Learn what the prognostic indicators are, and summon the courage to have all the tests done that you should have done. Learn how the different treatments affect the body. Absorb as much scientific information as you can stand, and then some. Find the discipline to study hard, like you did – or should have done! – in school.
Second, make smart choices. To do this, you’ll need to use all of your newly-honed gifts, both logical and intuitive. Neither, alone, is enough. Look at a problem from every angle you can, then ask your gut what feels right. Choose a good doctor, but realize that your life is ultimately your responsibility. Decide whether you need treatment, and what treatment is best. Above all, find a treatment you truly believe in.
In CLL, as in life, there are no guarantees. But the better you prepare yourself, the better your odds. Learning to cope with your diagnosis on all levels – mental, emotional, and spiritual – will add to your strength and will mean better days ahead.
There’s another old saying: “The journey of a thousand miles begins with a single step.” As you begin to do some of the things I’ve described above, you will feel good that you are doing something. You’ll feel empowered. And if you look at your diagnosis as a challenge, not as a defeat, you are already halfway there.
Disclaimer: The content of this website is intended for information only and is NOT meant to be medical advice. Please be sure to consult and follow the advice of your doctors on all medical matters.
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Topic: Patients' Corner