On this website, we are only too familiar with the face cancer shows to us the patients, the care-givers, the surviving spouses that can never quite shake the hurt and horror of losing a big chunk of ourselves when our partners die. Even for the “lucky” patients who are still in Watch & Wait mode, CLL is an intrusive presence in their lives – an unwanted companion that goes to bed with them each night and gets up to color their days. “Out sourcing” cancer worry works only so far. CLL (and all other cancers) changes us in ways that go far beyond superficial changes in our bodies. It changes us deep down in our chromosomes, at the very heart of our physical and emotional DNA. I know the lives of my entire family changed forever on the day my husband was diagnosed with CLL.
What kind of a face does cancer present to oncologists? How do our doctors cope with the stress of having to make life-or-death decisions in the absence of clear information? How do they cope with the trauma of losing patients in a never ending stream? Is there a point when offering condolences to the next-in-line newly bereaved family becomes a routine chore? What is it like, living at the nexus of professional detachment and personal human empathy? Does it change them as human beings?
I cannot say I understand completely how it must seem to oncologists and researchers treating patients with incurable cancers. But I do get a glimpse of the hell it could be, from my own humble role as a patient advocate. I too get to hear and experience the heartbreaking stories, up close and personal. I too try to protect my personal sanity (sometimes!) by hiding behind facts and figures, obsessively reading more and more journal articles, drowning my sadness in a flood of geeky science. A small bit of me dies each time I say goodbye to a friend I never actually met, who nevertheless became an important part of my CLL cyber-world.
I wonder how many expert oncologists die of cancer – not necessarily because they actually had cancer, but because their job of taking care of incurable cancer patients finally got to be too much for them – physically, emotionally and psychologically. Is there a lifetime maximum dose limit on grief for all human beings? Or does the rock-star status of cancer researchers somehow make them immune from it?
I would like to bring to your attention a book that just won the Pulitzer Prize for non-fiction. It describes patients, their personal stories, exciting research and brave researchers etc. But cancer itself is the main character. It takes center stage in all its awful glory. Below is a long excerpt of the book that was published on the NPR website. Dr. Mukherjee is an oncologist and cancer researcher at Columbia. I got hooked just reading the prologue and bought the kindle version of the book on Amazon. If you happen to read the book, do share your thoughts about it.
The Emperor of All Maladies: A Biography of Cancer
by Siddhartha Mukherjee
Prologue
On the morning of May 19, 2004, Carla Reed, a thirty-year-old kindergarten teacher from Ipswich, Massachusetts, a mother of three young children, woke up in bed with a headache. “Not just any headache,” she would recall later, “but a sort of numbness in my head. The kind of numbness that instantly tells you that something is terribly wrong.”
Something had been terribly wrong for nearly a month. Late in April, Carla had discovered a few bruises on her back. They had suddenly appeared one morning, like strange stigmata, then grown and vanished over the next month, leaving large map-shaped marks on her back. Almost indiscernibly, her gums had begun to turn white. By early May, Carla, a vivacious, energetic woman accustomed to spending hours in the classroom chasing down five- and six-year-olds, could barely walk up a flight of stairs. Some mornings, exhausted and unable to stand up, she crawled down the hallways of her house on all fours to get from one room to another. She slept fitfully for twelve or fourteen hours a day, then woke up feeling so overwhelmingly tired that she needed to haul herself back to the couch again to sleep.
Carla and her husband saw a general physician and a nurse twice during those four weeks, but she returned each time with no tests and without a diagnosis. Ghostly pains appeared and disappeared in her bones. The doctor fumbled about for some explanation. perhaps it was a migraine, she suggested, and asked Carla to try some aspirin. The aspirin simply worsened the bleeding in Carla’s white gums.
Outgoing, gregarious, and ebullient, Carla was more puzzled than worried about her waxing and waning illness. She had never been seriously ill in her life. The hospital was an abstract place for her; she had never met or consulted a medical specialist, let alone an oncologist. She imagined and concocted various causes to explain her symptoms — overwork, depression, dyspepsia, neuroses, insomnia. But in the end, something visceral arose inside her — a seventh sense — that told Carla something acute and catastrophic was brewing within her body.
On the afternoon of May 19, Carla dropped her two children with a neighbor and drove herself back to the clinic, demanding to have some blood tests. Her doctor ordered a routine test to check her blood counts. As the technician drew a tube of blood from her vein, he looked closely at the blood’s color, obviously intrigued. Watery, pale, and dilute, the liquid that welled out of Carla’s veins hardly resembled blood.
Carla waited the rest of the day without any news. At a fish market the next morning, she received a call.
“We need to draw some blood again,” the nurse from the clinic said.
“When should I come?” Carla asked, planning her hectic day. She remembers looking up at the clock on the wall. A half-pound steak of salmon was warming in her shopping basket, threatening to spoil if she left it out too long.
In the end, commonplace particulars make up Carla’s memories of illness: the clock, the car pool, the children, a tube of pale blood, a missed shower, the fish in the sun, the tightening tone of a voice on the phone. Carla cannot recall much of what the nurse said, only a general sense of urgency. “Come now,” she thinks the nurse said. “Come now.”
I heard about Carla’s case at seven o’clock on the morning of May 21, on a train speeding between Kendall Square and Charles Street in Boston. The sentence that flickered on my beeper had the staccato and deadpan force of a true medical emergency: Carla Reed/New patient with leukemia/14th Floor/Please see as soon as you arrive. As the train shot out of a long, dark tunnel, the glass towers of the Massachusetts General Hospital suddenly loomed into view, and I could see the windows of the fourteenth floor rooms.
Carla, I guessed, was sitting in one of those rooms by herself, terrifyingly alone. Outside the room, a buzz of frantic activity had probably begun. Tubes of blood were shuttling between the ward and the laboratories on the second floor. Nurses were moving about with specimens, interns collecting data for morning reports, alarms beeping, pages being sent out. Somewhere in the depths of the hospital, a microscope was flickering on, with the cells in Carla’s blood coming into focus under its lens.
I can feel relatively certain about all of this because the arrival of a patient with acute leukemia still sends a shiver down the hospital’s spine — all the way from the cancer wards on its upper floors to the clinical laboratories buried deep in the basement. Leukemia is cancer of the white blood cells — cancer in one of its most explosive, violent incarnations. As one nurse on the wards often liked to remind her patients, with this disease “even a paper cut is an emergency.”
For an oncologist in training, too, leukemia represents a special incarnation of cancer. Its pace, its acuity, its breathtaking, inexorable arc of growth forces rapid, often drastic decisions; it is terrifying to experience, terrifying to observe, and terrifying to treat. The body invaded by leukemia is pushed to its brittle physiological limit — every system, heart, lung, blood, working at the knife-edge of its performance. The nurses filled me in on the gaps in the story. Blood tests performed by Carla’s doctor had revealed that her red cell count was critically low, less than a third of normal. Instead of normal white cells, her blood was packed with millions of large, malignant white cells —blasts, in the vocabulary of cancer. Her doctor, having finally stumbled upon the real diagnosis, had sent her to the Massachusetts General Hospital.
In the long, bare hall outside Carla’s room, in the antiseptic gleam of the floor just mopped with diluted bleach, I ran through the list of tests that would be needed on her blood and mentally rehearsed the conversation I would have with her. There was, I noted ruefully, something rehearsed and robotic even about my sympathy. This was the tenth month of my “fellowship” in oncology — a two-year immersive medical program to train cancer specialists — and I felt as if I had gravitated to my lowest point. In those ten indescribably poignant and difficult months, dozens of patients in my care had died. I felt I was slowly becoming inured to the deaths and the desolation — vaccinated against the constant emotional brunt.
There were seven such cancer fellows at this hospital. On paper, we seemed like a formidable force: graduates of five medical schools and four teaching hospitals, sixty-six years of medical and scientific training, and twelve postgraduate degrees among us. But none of those years or degrees could possibly have prepared us for this training program. Medical school, internship, and residency had been physically and emotionally grueling, but the first months of the fellowship flicked away those memories as if all of that had been child’s play, the kindergarten of medical training.
Cancer was an all-consuming presence in our lives. It invaded our imaginations; it occupied our memories; it infiltrated every conversation, every thought. And if we, as physicians, found ourselves immersed in cancer, then our patients found their lives virtually obliterated by the disease. In Aleksandr Solzhenitsyn’s novel Cancer Ward, Pavel Nikolayevich Rusanov, a youthful Russian in his mid-forties, discovers that he has a tumor in his neck and is immediately whisked away into a cancer ward in some nameless hospital in the frigid north. The diagnosis of cancer—not the disease, but the mere stigma of its presence—becomes a death sentence for Rusanov. The illness strips him of his identity. It dresses him in a patient’s smock (a tragicomically cruel costume, no less blighting than a prisoner’s jumpsuit) and assumes absolute control of his actions. To be diagnosed with cancer, Rusanov discovers, is to enter a borderless medical gulag, a state even more invasive and paralyzing than the one that he has left behind. (Solzhenitsyn may have intended his absurdly totalitarian cancer hospital to parallel the absurdly totalitarian state outside it, yet when I once asked a woman with invasive cervical cancer about the parallel, she said sardonically, “Unfortunately, I did not need any metaphors to read the book. The cancer ward was my confining state, my prison.”)
As a doctor learning to tend cancer patients, I had only a partial glimpse of this confinement. But even skirting its periphery, I could still feel its power—the dense, insistent gravitational tug that pulls everything and everyone into the orbit of cancer. A colleague, freshly out of his fellowship, pulled me aside on my first week to offer some advice. “It’s called an immersive training program,” he said, lowering his voice. “But by immersive, they really mean drowning. Don’t let it work its way into everything you do. Have a life outside the hospital. You’ll need it, or you’ll get swallowed.”
But it was impossible not to be swallowed. In the parking lot of the hospital, a chilly, concrete box lit by neon floodlights, I spent the end of every evening after rounds in stunned incoherence, the car radio crackling vacantly in the background, as I compulsively tried to reconstruct the events of the day. The stories of my patients consumed me, and the decisions that I made haunted me. Was it worthwhile continuing yet another round of chemotherapy on a sixty-six-year-old pharmacist with lung cancer who had failed all other drugs? Was is better to try a tested and potent combination of drugs on a twenty-six-year-old woman with Hodgkin’s disease and risk losing her fertility, or to choose a more experimental combination that might spare it? Should a Spanish-speaking mother of three with colon cancer be enrolled in a new clinical trial when she can barely read the formal and inscrutable language of the consent forms?
Immersed in the day-to-day management of cancer, I could only see the lives and fates of my patients played out in color-saturated detail, like a television with the contrast turned too high. I could not pan back from the screen. I knew instinctively that these experiences were part of a much larger battle against cancer, but its contours lay far outside my reach. I had a novice’s hunger for history, but also a novice’s inability to envision it.
30 comments on "“The Emperor Of All Maladies”"
I concur- an engrossing narrative and a worth while reminder of the quality of those who care for us and the psychic burden they bear.
an eloquent book, and an equally eloquent reminder to read it. thanks,Chaya.
The one thing that strikes me is the emotional and intellectual tightrope ‘cancer doctors’ must walk between their training to ‘fix’ what’s wrong and the knowledge they share with their patients, that some things can’t be fixed. wafting between two worlds, two realities, their training,and the cold reality they must face and make clear to those whose lives are now swallowed by this disease; the patient and the ‘others’.
they share this somewhat unreal world more intimately with their patients than many they deal with every day. Family, colleagues and friends all want it fixed, and live in a world where this is the standard of achievement. This bond makes it especially difficult when they lose yet another new compadre.
An engrossing read, peppered with many thought provoking, worth remembering quotes. saw Dr. Mukherjee on the news and jumped onto amazon to download it that morning. I’m not sorry I did.
Something we as patients tend to overlook. How do medical personnel deal with the day to day highs and lows of treating cancer in all of its forms.
Dr. Mukherjee is obviously a sensitive, caring professional who goes beyond the cold clinical world of the ocologist, and gives us a glimpse of how cancer also affects those who are trained to fight it.
This is a book that I will most surely read. Thank you Chaya for bringing it to our attention.
Having just been to the 2010-2011 launch of the Cancer Advocacy Coalition of Canada annual “Report Card on Cancer in Canada as a representative of the CLLPAG (CLL Advocacy Group) I was blown away by the passion of the Oncologists in advocating for the physical, emotional and financial burdens of cancer.
I came away with renewed hope and the realization that by no means am I alone as I live with leukemia.
It reinforced for me the last verse of my song “Haemo Blues”
It’s not the final sentence
As we now start to fight
Determination forces us
To see the world with new delight
The people that we love
Have a meaning all anew
Our senses come alive
As we sing the Haemo Blues
God bless you Chaya and to all my fellow friends living with CLL, keep driving your treatment and Believe
While reading “The Emperor of All Maladies,” I was able to get such a sweeping perspective on cancer, a much different focus than my obsession with CLL. The book is an excellent read…I’m glad it’s getting so much attention.
Bravo Chaya – Many many thanks to you for giving us this wonderful read.
Another great read is “HOW WE DIE” by Sherwin B. Nuland which covers the pathology and physical ending of life. It also reflects on the emotional wreckage healthcare providers witness and retain for the rest of their lives.
Read this book when it first came out. It is a well written and researched book; it is also very realistic and in certain ways very depressing. My take-a-way was 40 years and hundreds of billions after the Nixon declared “war” on cancer we have won a few skirmishes but are nowhere near winning the “war”. Every generation for a hundred years has had high hopes that “science” could conquer this monster. We look around at all the incredible advances science has made in our lives like going to the moon or the internet and we expect the same in cancer biology. Understanding cancer is proving to be a far more difficult challenge. Having said all that, I am optimistic this will be the generation that does it. It will require the most basic understanding of biology. I am a pessimist when it come to gross chemotherapy which to me is akin to “radiation” therapy of generations past. Coexisting with cancer for a decent life is probably more realistic than a “cure”. My admiration to all who all work in this field and my prayers to all afflicted. That’s my two cents.
Thank you Chaya for bringing this book to our attention. Thank you for all you do for us in spite of your own loss. It really helps to deal with this sentence when we see and share the view of others around us. Especially to see cancer from the caregivers perspective. May you be encouraged to continue the fight in honor of PC.
“The Emperor of All Maladies” is indeed worthy of reading and passing on to others. When I began it, someone saw me with it and asked if I wasn’t being a bit obsessive. After all, I have CLL?SLL. Isn’t that enough cancer for anyone? Truth be told, this book helps one to gain perspective — an elusive thing in the world of your own singular cancer. It is interesting. People in love are never asked if their immersion in the poetry of love is too obsessive, too passionate. Cancer lives in your mind and heart just as completely as a first love. You lie down with it and greet it first thing in the morning. You also laugh about it, cry about it and despair of its end. You try not to inflict it on others but moments occur when you cannot help yourself. I suppose the one thing about CLL that both intrigues and repulses me is that it is in two of the circulating systems of the body through the circulatory and the lymphatic system. Unlike contained cancers, it infiltrates your entire being. I worry for those who do not have families or who have young children or are young children. Life is certainly precious at all ages but at least my children are grown and independent. I don’t live with the fear of what my death could mean to their lives. My husband has his music to keep him healthy and engaged in life.He has our children. My friends, I hope, will know all they have done for and meant to me. I worry about my healthcare providers because they do not hold back their friendship, their support and their caring. I want to warn them not to invest too much but they are committed to their path of humanity. Oddly enough to some, I have also had so many periods of laughter about this cancer — that laugh until it hurts and can I ever stop kind of laughter. This disease leads us to a contrary state of defiant joy.
Thank you, as always Chaya. This article particularly struck home. I’m on W&W for the past (almost to the day) past 4 years. I cannot recount the other maladies, fortunately, nothing immediately life threatening (such irony), but when you can’t even have a tooth pulled without consulting the oncologist, it’s literally soul-draining.
The effect on my husband as a caregiver has put a strain on our marriage, though we love each other dearly and will get through this – somehow.
I realize how much strain it is to carry on, for both of us. Of course, being an overly sensitive person, I think – well, I could be in Japan. However, I somehow use such horrific tragedies to escape, in an odd way, from my own maladies.
I cried when I read this.
Chaya,
Thank You. This book has been on my list but I have been almost afraid to read it. But, I must. I have often wondered how oncologists cope and it has to be a real issue for them. Early in my career, I worked as a RN in a hospital and had pts with various cancers on my case load. Even before my own diagnoses with 2 different cancers, I still thought about my patients that I lost to cancer. I was fond of them and to me, thinking of them was a kind of memorial to them and I did not want to let go of them. ‘Why should I? During those yrs I practiced in a hospital, cancer was something that happened to other people. Maybe thats a way medical people keep going.
Recently I had to see a specialist for a condition unrelated to my CLL and instantly hit it off with him. He was an excellent clinician, shared all info, discussed it at length etc and shared with me that he had just returned to work after battling his own cancer- his 2nd case. We talked and shared and I had the feeling he needed to talk to someone who understood what it was like to have cancer.
Thanks
Chris R
When my husband was diagnosed ten years ago, I drank deeply of my own brand of Kool-aid and preached the gospel of defiance, courage and finding the solution that would defeat this cancer. Failure was not an option, either for him or for me.
Then the unthinkable happened. “Harvey” died ( http://www.journal.clltopics.org/ ). A part of me has never left that ICU room where his heart beat for the last time.
Am I any smarter today? Do I have any more answers than I did back then, almost three years ago? Am I still inviting my readers to drink the same “Kool-aid”, setting them up for the same sense of confusion, loss and grief that cannot be explained away?
We talk about the “war” on cancer. We talk of “brave” patients “fighting” a relentless “enemy”. Any number of books out there extol the importance of positive attitude. And yet, our guys keep dying. The obits talk about another good man (woman) who “lost the battle” to cancer. We have met the “enemy” – and the enemy is us, our own bodies.
Is something wrong with this imagery of battles lost and won – an imagery that eventually guarantees each of us is a loser? Is there a “winning” that goes beyond mere extension of life? I wish I knew. Facts and figures I can manage. Wisdom has eluded me thus far.
Thank you Chaya for bringing this book to my attention. As a nurse and a person with cancer I will be getting it to read today.
Wonderful points. So hard. A very wise friend who died of bladder cancer wrote a beautiful poem about herself ‘and my cancer sitting down to eat’. I wish I had it in it’s entirety. She was a musician, a strong presence in the community, and she had such a way with words. Her teenage son had planned for a long time to go to Africa to dance. She told him to go. ‘Do you want to sit around and watch me die or go to Africa and DANCE?’.
He went to Africa and danced and then danced at the celebration of her life along with all of her friends/family/loved ones.
Chaya –
I have not yet read this book, though I will. It sounds excellent. I have often thought about how difficult it must be for the doctors and medical staff that I work with. One of the hardest parts of having cancer for me is when I have to relay bad news to people who I know care about me. I’ve recently been thinking about how my doctors must feel the same way.
I was diagnosed with SLL (del 17p) in Dec 2009 at age 54. I went through a Campath trial a year ago, HDMP/R last October, and an HSCT on Dec 21. (Day 123 – still doing well, btw!!)
I know this is not a common feeling, but I do NOT feel as though cancer is “the enemy” nor do I feel like I’m “battling”… I feel very uneasy when others tell me “I’m so brave…” When I was first diagnosed, I made my husband promise that if and when he had to write my obituary, that he NOT say I was “battling” cancer. I feel like I have a disease that I’m trying to manage the best I can, just as I’ve managed my moderate Crohn’s disease since I was 18. I’m sure my background growing up influences how I view having cancer: My father survived bladder cancer, lung cancer, and finally CML over 18 years before he died. My mother died of liver cancer only 8 weeks after diagnosis. Most significantly, my mother had some unknown central nervous system disease when she was in her early 30’s that left her handicapped (no sense of balance and unable to walk without 4-prong canes) for the rest of her life. I never even realized she was handicapped until I was a teenager. It’s just who she was…
So yes, I am cursed with not very good genes, health-wise :-) But I just don’t feel like cancer defines who am I, in my soul. It is not always at the top of my mind; more like it’s becoming integrated into me as yet another part of who I am. I’m a nurturing person who does a lot of volunteer work in my community, I’m a graduate student, and now am dealing with the medical maze of cancer. (Ok, maybe I battle the medical system sometimes…) But it just doesn’t feel right to me to say I’m battling or waging war on my cancer. Just as I never saw myself as “fighting” Crohn’s (which is pretty much burned itself out by now), it’s a part of me now, hopefully not forever, and all I can do is cope with it the best I can.
What a wonderful book! My only regret is that I downloaded it on my Nook
and can’t share it with friends. (Still love real books.)
As the Mistress of both CLL and lung cancer, the history of the struggle
over the ages against all cancers was fascinating. Will admit that the politics of cancer was new to me….but it certainly makes us all more aware of the difficulties many researchers have overcome and those that many still face.
The book leaves you with the feeling that you are glad you live in 2011, not the 1700/1800/even 1900’s!
I second Bob Armstrong’s suggestion of Nuland’s How We Die as another valuable book about how death looks to the people who try to deal with it medically.
One of the things that most struck me about Emperor of All Maladies was how “human” the doctors who treat and research cancer are. They are humble, vain, tired, energetic, insensitive, compassionate, just like anyone else. They let their enthusiasms, biases and personalities shape their dealings with patients. A few (a very few) are frauds who have caused terrible suffering. More than a few are dedicated to some extreme treatment — radical surgery, endless chemotherapy — which saves some lives and also causes terrible suffering. Most are not very good at recognizing the moment when more treatment is no longer useful. Only a handful of doctors can look at a patient’s dying as anything but a failure on their own parts.
I think as patients we need to feel great compassion toward our doctors; in spite of their seeming prestige and power and wealth their lives are often very difficult. Sometimes what appears to be impatience or callousness may only be self-protection from painful realities. (At other times, of course, it may be that the doctor is just a jerk!) At the same time, we should recognize that the doctor’s interest and wishes are not necessarily identical with our own interest and wishes, and we need the wisdom to discover within ourselves what those interests and wishes are, and the courage to assert them to our doctors and loved ones.
Thank you Chaya for keeping us informed. I plan to read Dr. Mukherjee’s book
Be well,
Monique
Me again.
Would add a heartfelt Thank You to Chaya for all she brings to us and all her tireless work. She writes that “wisdom has so far eluded me thus far,” but there is great wisdom in everything she shares with us. We are very lucky to have her on our side!
masbach, here here
If steroids release malignant lymphocytes from the lymph glands,bone marrow etc where they have been hiding …… will certain male enhancing drugs do the same …. viagra cialis etc??
Oncologists, psychiatrists, nurses, EMT’s, etc. definitely have special challenges both emotionally and as life-long learners. (Programs like the Scout Medical Explorers can help both male and female high school students make better, more informed career choices appropriate for themselves.) However, 24/7 spousal caregivers deserve special mention and praise for what they accomplish typically with little or no specialized medical education. Chaya is one obvious example but I can think of several others thanks to cancers, strokes, Parkinson’s and Alzheimer’s. Disrupted sleep may be one common consequence of the demanding 24/7 schedule, strong emotional ties, etc.
We were watching Dr. Mukherjee’s presentation on C-Span 2 (Book TV) when Chaya’s email arrived, and would recommend that everyone watch it. I copied the following address into this comment, but it doesn’t seem to make an active link. But if you copy it and paste it into your browser’s address box (or just Google C-Span 2 Mukherjee and click on Book TV | Top Nonfiction Authors and Books), you can find the presentation and watch/listen. VERY WORTHWHILE!
http://www.booktv.org/Featured/12230/2011+PULITZER+PRIZE+WINNER+GENERAL+NONFICTION+The+Emperor+of+All+Maladies+A+Biography+of+Cancer.aspx
Oops — after posting the above comment and checking it out, I found that it DOES make an active link! So just click on it and go directly to the video.
Chaya,
Thank you, for compassion and clarity and “geeky” science.
Were it that all doctors/nurses one encounters, had that kind of sentiment and attitude!
A very worthwhile read.
mette
I have just started reading this on my Kindle… thank you so much for bringing the book to my attention. Both my husband and I have blood cancers… I have CLL and he has Waldenstrom’s as well as prostate cancer. I cannot help but think these things are possibly related to our occupation’s. We are chemists and date back to the time when one pipetted via mouth, had lots of exposure to benzene and other organic solvents. However, I wouldn’t change a thing about what we did…it was and is a fun thing to do…even though in retrospect, I might have done some things a bit more carefully!
Thank you
Maria Cherie
Thank you, Chaya, for bringing this book to our attention. Since I began working with my oncologist in Columbia, I have become very sensitive to the fact that he carries a very big load on his rather young shoulders. He has a beautiful wife and two children under 5 as well. Sometimes when we are talking I can actually see pain in his expression and eyes. Then it dawns on me – this guy really cares about what I’m going through! Bravo to oncologists and the amazing compassion and empathy they show us!
I am going to check out the AMAZON price on this book. Just the excerpt you posted has me intrigued!
Chaya, I want to assure you that you DO have wisdom! Something that became clear to me several years ago is that when we are humble with the knowledge we gain through study and research, it then becomes wisdom. If we have sn attitude that we know it all and are God’s gift to the cause we are fighting for, then knowledge just gets messed up with pride. This is not your case, as you have such humility.
In that at this point I have few family or friends that even “get it” that I am in the middle of an immune system war and each day brings a new challenge. However, I wish to say that were I to cling to the imagery of battles lost and won, imagery that guarantees I am a loser, I don’t think I could get out of bed each day, put one foot in front of the other and do the best my body will let me do for that given day (as you know, each day for us is strickingly different!). I prefer to take hold of nature as my imagery because there is such beauty there and so much to marvel at as one ponders how there could be so many species of birds, that the Aspen trees in the Colorado Rockies are the largest living organism and their leaves produce the most magnificent colors in the fall, and that spring in Columbia this year has been breathtaking! I guess you could say nature and my priceless puppy keep me hanging on.
Also, cancer is not the only “hardship” I have had to battle. All my life I have struggled with deep depression and suicide attempts because I am a wounded warrior, a child of sexual, emotional and physical abuse. I condiser emotional and mental hardship the “silent killer” because the rest of the world doesn’t have a clue what those of us who deal with it feel, the anguish, the heartache, the yearning to die so all the flashbacks and pain with it will stop torturing our mind.
Now, however, I see myself not as a wounded warrior but a survivor because there are many reasons I could already be gone from this earth and yet I’m not. So, I apply the same thinking to my CLL – I’m a survivor. Heck, the minute a baby is born their body cells begin to die. For those of us with an immune disease, though, it just happens faster with a lot of tough days to get through. Nature is powerful imagery, at least for me.
I like what elainebe wrote above: when a friend of hers passed from cancer, her son and friends danced at the celebration of her life. I sincerely hope the very same thing will happen when I pass in that I want those who come to my memorial service to celebrate my life, not morn my loss.
Blessings on you, Chaya, and all that you continue to do through this website!
Wladyslaw: Saw your question and thought you might like to refer to an article in “Blood”, first published in June, 2002. The title is “Sildenafil (Viagra) and Vardenafil, type 5/6 phosphodiesterase inhibitors, induce caspase-dependent apoptosis of B-CLL cells”. I take it; I’m in the CLL study at NIH in Bethesda and when I first brought it up to them, they were aware of this report from a hematology department in a hospital in France. Best wishes.
Thank you, Chaya, for introducing the book, Emperor of All Maladies, to us. Checked out the book in my local library and just finished reading it.
Learned a lot about key individuals who were instrumental in the art of fundraising to support the “war on cancer,” trials and tribulations of oncologists, and the progress from surgery, combination chemotherapy, to genetic manipulation to find a cure.
Successes have been noted with childhood leukemia, breast cancer, and CML. Now we have to find something to treat CLL as Gleevec has done for CML.
Author has done a terrific job of describing the oncologists with their strengths, weaknesses, and peculiarities to make the book a must read for cancer patients. Thanks again for sharing.
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