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My name is Ron Campbell. I am a retired physician, a very fortunate and happy family man, a proud grampa x3 and a grateful resident of the State of Maine. Dr. Brian Koffman, a colleague and new friend and fellow traveler in CLL has asked me to share some thoughts and experiences as a member of this special society of CLL sojourners.
The intent of this piece is to try to give voice to an emotional aspect of CLL that many of us can relate to.
I’d like to begin with the following musings. They represent a kind of a glossary of terms that have meaning to many us CLL folks in a psychological way.
There are days you just don’t forget.
- The end of World War II; The end of the Vietnam War.
- The Kennedy Assassination; 9/11.
- Your wedding day, the birth of your children, (if you are one with these events in your life).
- Where you were when you were diagnosed with cancer
To worry, sometimes excessively, is very common. Even our pets seem to worry when we are late getting home. We, on the other hand, worry about so much more, not just when our human will be coming home or when our next meal will occur. We worry about everything. We worry about shelter, bills, the weather, our children, burglars (or worse, assailants). We worry about who is in the White House or how our favorite sports team is doing and on and on. When we have lost our health, NOW WE ARE WORRIERS on steroids.
“The only thing certain in life is death and taxes” This line is often attributed to Benjamin Franklin, 1789. Actually it was a thought first known to be spoken 50 years earlier by English actor Christopher Bullock who said: “’Tis impossible to be sure of anything but Death and Taxes”.
Who doesn’t want a little predictability in their lives? Human beings have been on a quest for peace of mind since the beginning of our history.
Insecurity is a very common human experience. Most of us have it, some of us acknowledge it. Insecurity is a normal state of being for us humans. We search for safety, predictability and certainty. We search for refuge from threats. Other creatures rely on instinct for self-preservation. Humans take it to the next level. We search into our own genome! We unravel our chromosomes and tweak invisible proteins on the surface of our B lymphocytes. We have learned to worry with tremendous, heretofore unforeseen, complexity. We have raised Worry to an art form.
We constantly question. We want answers. We want to know how things work, how they turn out. Can you imagine reading a good mystery novel or love story and not reading the final chapter?
Trust, security and certainty have a lot in common.
In God we trust.
Trust your gut.
I’m certain you’ll be fine,
“Trust me, I am from the government and I am here to help you”.
When we trust too much we don’t push as hard for answers. When we have a healthy measure of trust/faith we feel calmer, even happier. We worry less. Who is to say that this path is the wrong one?
Others of us seem never stop doubting, questioning and continuously wanting to know more. They pursue still more questions that their newfound answers lead them to. We can benefit from this personality characteristic, even if we don’t possess it as strongly ourselves.
Still, if knowledge is so powerful, then why do the people with the most knowledge live with the most uncertainty? It seems unjust. But, as we know, life is not bound by human expectations.
Ignorance truly can be bliss. Who doesn’t want to go back to that day before one’s diagnosis?
The more you know, the more you know risk.
We share this perception with many creatures in our world. We sense that something is coming that is bad for us or our loved ones. It could harm us or even kill us. If we were a housefly, we would try to flee at the sight of the palm of a hand or a fly swatter.
Fear is a heavy, but often healthy, price we pay to manage danger, perceived or real. If we don’t pay it, then danger can overtake us. It is about self-preservation. If we don’t deal with it, we live in fear, often perpetually. A good way to cope with fear is to study the enemy, know it well and learn its strengths and weaknesses, in order to overcome it. Another way to cope with fear is to place our fate into the hands of another. This choice can be risky.
I have CLL. I was presumptively diagnosed nearly four years ago by yours truly.
Like other physicians, I have been humbled by sitting “on” the exam table, instead of standing next to it. On one visit 4 years ago, my CBC was a bit off, but had not yet caught the attention (that he told me about) of my doctor. WBC’s were around 12,000. “Maybe I had a little virus or something”. After researching lab results from recent years, I spotted a trend where my lymphocytes were gradually catching up to my neutrophils. On this fateful day, the lymphocytes and neutrophils had reached parity. “That’s not right”, I thought to myself. With a little more reading, I found that I was at risk of having a lymphoma of some kind and that likely it was leukemia, specifically CLL. Being “in the business”, I saw a local oncologist the next day, who was kind enough to fit me into his busy day. He agreed with my concerns and ordered a FISH study and other pertinent labs. Shortly thereafter, my concerns were confirmed. CLL, 13q, CD38 negative, ZAP70=75%. Afterward, the poor prognostic implications of high ZAP70 was confirmed with an IGVH test revealing me to be “unmutated”. Who ever thought having mutations in your body was a good thing?!
Physicians don’t like being patients any more than anyone else. Since we “know too much” some physicians, now, try hard to take care of themselves. I have been in my doctor’s cubicle waiting for her/him to come in numerous times in the last 50 of my 70 years, concerned with symptoms and imagining that I might have an unwanted condition, only to find out that my concerns were unwarranted. I got used to expecting a happy ending to the visit. This time, unfortunately, I was right.
Remembering when I was in medical training years ago, I vividly recall scrubbing in to a “chest case”, where medical students observe and hold retractors for the surgeon. After this particular lung cancer case was completed, I assisted in the closing of the skin before the patient went to the recovery room. The surgeons had already left the operating room for the locker room. When I got there, both surgeons and the anesthesiologist were lit up and “enjoying” a cigarette! I was shocked and have never forgotten that image from 45 years ago. Is there a better example of denial? Meanwhile, as I was saying, today many doctors try harder to practice what they preach. Unfortunately, that does not inoculate them from the illnesses that their patients struggle with.
So, like many of my fellow travelers, I am a member of the broad category of watch and wait (WORRY).
Never in my thousands of patient encounters have I ever sat with a patient who had a serious medical/biological health condition and suggested to them that we should watch and see what happens. Doctors always want to do something. There are times that they end up regretting “doing something” but it is in their DNA to want to offer a solution even if it is a suggestion of the patient changing their behavior or life style like losing weight or exercising more or cutting down on alcohol or salt. Something!
During my career as a medical doctor in psychiatry, I learned that “talk therapy” was a powerful tool that I could use to help a patient cope with and to overcome major mental health disorders. I also learned that most of their conditions had a basis in biology that had gotten off track. Very few of my patients were cured, but almost all got better and the majority got a lot better, so that they could enjoy a more full and functional life. Many could not have done that without taking medication that sometimes had unpleasant side effects and even toxic and dangerous side effects that could do lasting harm. I found that patients did much better recovering if they learned all that they could about their condition and how their medicine worked. I explained that they could not know everything about all the illnesses that beset us without going to medical school and even then it would not be possible. But, I also taught them that they could become experts in their one, very threatening, condition and end up knowing more about that one condition than most of their general physicians. Patients who did that had much better treatment outcomes.
This disease is a different animal. Cancer cells are multiplying in our bone marrow, traveling in our blood stream and lymphatic system and yet we don’t begin treatment. So far, the treatments for our illness are providing better, safer and more durable outcomes than before, when and if treatment is required. However, in spite of that, there is no reproducible evidence that early treatment is safer than waiting or that early treatment provides extension of life or improvement in quality of life.
So, we wait together and worry together. Paradoxically, and certainly not intuitively, there is an accumulating body of evidence that if we do wait, treatment does both positively impact our CLL symptoms and does have a positive effect on our life expectancy.
I am mindful that those of us who are in treatment right now are also not immunized from worry.
“Am I on the right treatment or trial and the best arm of my trial?”
“Will I have to go off my medicine because of side effects or treatment failure or clonal evolution?”
Many of us worry, but are not grousing. What can we do?
Perhaps it is reasonable to give voice to the absolutely foreign, counterintuitive, major anxiety provoking experience of waiting for cancer cells to multiply within us and to migrate to hiding places until their numbers become so great that they severely threaten our very survival. Yes, we try to get on with our lives. We gratefully work if we can. We spend quality time with our families and friends and we travel to places on our list of undone things. However, most of us can’t deny that the threat that CLL represents is frequently in our thoughts. We know that others have very stressful, life-threatening, medical conditions also; some even worse than ours. But, they are not waiting. They are doing something or they have come to the end of doing something. For us, waiting is the very hard, but correct choice at this time, but it exacts a dear cost. Our family and friends don’t understand it. Explaining it to them is a giant pain.
What else can we do? One thing we can do is to know this one disease better than most of the non-specialist docs. We can study this one adversary and learn how the available weapons work and how to use them and be aware of the weapons that are in development. At the current state of the art for treating CLL, there are major discoveries and innovations in the treatment options with new, and often very effective, targeted therapies. All of us are grateful for these advances as we hope for even more progress in the discovery of treatments that can better control (if not cure) our illness in a minimally toxic way that will make it “go away” while restoring our weakened immune systems that are often further weakened or damaged by the treatments themselves. The science is not totally there yet. But the science is aggressively headed in the right direction, thanks in part to selfless, dedicated and very curious researchers, trial participants and caregivers and blog writers and also by government funding and large research grants from pharmaceutical companies who are responding to the motivation of profit.
Often when we make really big mistakes in life, many of us beg for forgiveness. We want to have peace of mind and freedom from guilt/worry.
When Life itself makes a really Big Mistake in Us!!, we BEG for a solution. We want peace of mind, freedom from fear, worry.
It’s always the WORRY thing!
Those of us who pour through the research articles and watch the videos at the CLL Society and Patient Power sites and other resources and those of us who also have a CLL specialist on our team will tip the scale in our favor toward survival and (recovery?). There are complex and enormously important decisions to be made by us. We want the best treatment options when treatment time comes.
Can the beggars mentioned just above also be choosers?
To paraphrase Dr. Brian Koffman: “Smart beggars can!”
Dr. Ronald R. Campbell, is a 1973 OSU Medical School Graduate who specialized in Psychiatry. He is retired and is now an OSU hematology-oncology patient.
Originally published in The CLL Tribune Q4 2017.