Cancer Chaos

One of the first things I teach medical students is to be aware that they have arrived in a bizarre land.  The strange things they see, the disturbed experiences they have, the weird stories they hear, are like nothing else in life.  I advise students to stay in touch with their feelings, to note what shocks, frightens, or embarrasses them.  Remember those emotions now, because as doctors learn their craft they learn to control those reactions. They create order from confusion, and the wild world of medicine seems to make sense.  However, for their patients, first entering the healthcare maelstrom, it will always be chaos.

Much of the practice of medicine is about organization and structure; using data and measurement to apply scientific principles to variant biology.  From the simplest concepts of height, weight, and blood pressure to the esoteric study of molecular cancer mutations, we change the “sick old lady,” to a 78 year-old female with acute respiratory desaturation (89%), from nonischemic cardiomyopathy (32%), exacerbated by a normochromic normocytic (82) anemia (8.3), from chemotherapy (V58.1), with congestive heart failure (428.0), induced by saline resuscitation (1500cc) treatment of neutropenic (0.8) sepsis (103.4), and shock (88/47); in Room 4, Bed 1, 5N.

Medical care demands we digitize the “old lady.”  This process makes analysis, decision-making and treatment possible.  Each number is in its place, each box checked and tabulated; all is calm and well. The problem is we fool ourselves into believing that we have forged from disorganization a global order that applies to the whole person and family.

The reality is that while we may sterilize a part of each person’s life, that part we call medicine, we can never sooth the chaos.  Confusion, variation, originality and endless change are what make human beings special.  The scientific model cannot be applied to all experience or to the global reaction to illness. If we expect objectivity and structure, simply because we have organized health events, we fail to appreciate the complexity of our patients and will universally fail to give the best in health care.

Life for patients and their families is so much more than data. It is soaked in abstract ideas, dysfunctional decisions, social influence and emotion. Why did I deserve this? How will the cancer effect and change my relationships, my marriage, my children?  What about my job, what will I do to make money or to justify my worth?  Who will mow the lawn? Has god deserted me? Am I so altered that I am no more?  With the loss of strength, how I will I express or share passion?  How beautiful is the sunset!  What about suicide?  Will my family “catch” the disease?  What will tomorrow’s, tomorrow, bring?

Life is myriad.  Cancer is chaos.  To think that the superficial organization of medical care brings universal calm is to believe that putting a top on a boiling pot quiets the seething waters inside; the kettle looks neat, quiet, but the metal grows hot and will, in time, boil over. The  “lady,” is also a grandmother, church secretary, struggling artist, world traveler, friend, union shop steward, lover and is surrounded by family, neighbors and even enemies.

We gain from recognition that there are major limits in the application of clinical structure.  Doctors must accept that what happens to their patients is much more than can by typed into a history, physical, diagnosis and treatment plan.  Physicians must be sensitive and vigilant to the labyrinth that is their patient’s lives and how it affects them and therapy.  It is not just writing a prescription.

Perhaps more important, every family and patient need to learn that, as in the rest of life, chaos is normal.  Every patient and family enters the medical arena with all the variation, strength and weakness, which has been their whole life.  Disease inflames that history and adds new layers of change.  No journey is a straight line.  Each person is different and each day a new unstable experience.

Life is not neat, digitized, or organized.  Life is strange and messy.  That is what makes life hard, but it is also what makes it wonderful.  Disease, cancer, is part of that chaos, increasing the intensity.  That is normal, healthy and to be expected.  It is a tough journey, but we can make it.  Moreover, just maybe, that is what makes life worth living.


  • I am not a doctor, just a humble artist, BFA, and some additional credits. My life experiences..truly a myriad..not as complex as some..but more complex than many. I found this article to be brilliant. Inspiring to anyone who might be starting in the field of medicine. Kudos!
  • An after thought...after I gave birth to my first child (post breast cancer treatment) I went to MN to visit and meet some of my husbands relatives. My son was just a few months old. I was introduced to a cousin of his who was also a married artist whose work was receiving much acceptance and recognition. She approached me, .asking how I felt about things after having my baby..she was thinking of having a baby with her husband but her career plans and his were aspiring. I said to her that my 'art work' and career plans were no where near as far as hers were in development, but, given the richness and depth of the experience and everything that was involved in my son's birth, was something I never fathomed. My love for my child brought to a place where there were no more other sacrifice, no depth I would not plummet or height I would not try to achieve. She eventually did have a child....
  • Angela Evans,R.N.
    My dear Dr. Salwitz-- How right you are that pt's must be "digitized" as you put in it in order for both drs. And nurses to give pt's the appropriate medical care they need and deserve. However,pt's also need that human contact and compassion so that they are not just the disease in bed # _. I think nurses generally try to be compassionate & understanding ,but much depends on the staffing of each individual unit. I think physicians would do well to cultivate more compassion in both private practice and hospital medicine as there are more and more pt's being cared for by hospitalists who do not know them as anything other than their illness. Those. pt's who still have dr's that admit their own pt's are a privelaged few in my opinion .
    • D Someya Reed
      With all due respect to both you and your profession (which I hold in both very high regard and expectation), I disagree that either compassion or understanding are in any way tied to staffing levels. I don’t believe that compassion and understanding are something you “generally try” (to do) but rather do (as well you can) or you’re just not doing it. In my own experience, I’ve seen both extremes of the compassion/understanding spectrum and everything in-between. I’ve had a doctor, upon first look at my wife at our first appointment (no exam, no test results) say, “You have ovarian cancer. You are going to die. I’m going to step out in the hall for 5 minutes so you can discuss whether to pursue treatment or not.” Then he left the room. I’ve had another doctor (a surgeon) go far beyond the normal duty to his patients; calling to check on my wife from hospital, from his home after hours, during breaks at conferences and lectures (even those he was presenting), even while on vacation in Hawaii. This was during her care in hospital and all through her recovery. I’ve had nurses who stopped in to check on my wife in hospital both before and after their 12-hour shifts. On breaks; always asking if she’d like a popsicle, jell-o or ice water. These same nurses made sure I always had a cot next to her bed even though I assured them the chair was fine. Many still knew her by name sometimes over a year between re-hospitalizations and sweetly commented how they’d never seen two people so connected and in love as we, finding it hard to believe we’d been together nearly 20 years. I’ve seen horror and terror in my wife’s eyes when a hospice nurse came into our home informing us that after 30 days under their “care” our original contract had been invalidated by the hospice’s nursing director, executive director and medical director (without notice or contact of our attending physician). That she had been ordered “not to lift a finger to help (my wife) in any way unless and until both of us signed the new contract” (a felony violation of contract law in our state). This new contract allowed any staff nurse to do anything they felt appropriate and neither we nor any family member could refuse or interfere “even in the slightest.” It stated that “any failure to comply can and will result in…physician being notified, hospice services being discontinued (even though they’d just done that and)…being discharged.” We were given one hour to read, discuss and decide while the nurse and social worker sat and watched us. This action was in response to my wife’s 2nd refusal in a 7 day period to be turned fully on her side so the nurse could merely see (neither touch nor treat) her back which the hospice claimed (her refusal) violated their Plan of Care (the one they refused to allow us to have a copy of or even see because it was a “living document”). As further enticement for us to sign, the nurse held a chemotherapy port flushing kit above my wife stating that she would gladly flush her overdue and backed up port (her left arm painfully swollen 2-3 times its normal size) the moment we both signed the papers or else she would exit our home, my wife would be immediately discharged and all equipment removed. When I asked how was my wife to sign the contract, the nurse merely shrugged her shoulders and tapped her watch. My wife was fully quadriplegic. My wife had entered into hospice care as a metastatic breast cancer patient. She had endometriosis, 5 surgeries in the prior year (including mastectomy and a complete hysterectomy). Her legs were no longer weight bearing as they were severed from her cancer engulfed hips by separation of both femoral necks. Bone tumors cracking open her spine at the T12 vertebrae and spinal cord compression sealed her fate to paraplegia with imminent spinal cord compression at the C7 vertebrae which would result in full paralysis. She also had over 15 tumors in each lung (radiology stopped counting at that point…inoperable), a large tumor mass on the outside of her right lung, bone tumors throughout her body except her head and neck along with cushing’s disease. During a 7 day window from days 22 through 28 she experienced severe pain (only when moved) as her spine was cracked open and cord compression occurred at C7. The hospice nursing director said that she would not accept a patient refusal more than once in any 7 day period and said to me in person, “Your wife will do what we ask and I don’t care how much pain she’s in.” The hospice medical director said that he knew all that his staff was doing and had approved every bit of it. Turned out the medical director was the same oncologist my wife had rejected 2 years prior when he told us that she should accept his severe chemo regimen because she should realize “how much we will learn from your death.” He acknowledged that he remembered us and my wife’s refusal of him. It was unethical for him to be involved in any decision to expel her. I disagree that compassionate doctors are a rarity unless you are referring only to those that go way beyond the call of duty. I think that everyone in the medical field (and many other professions) could benefit from cultivating compassion and understanding. None of this was intended to offend and I hope no one takes it that way. I couldn’t think of any other way to explain this without expressing details that I live with every single day.
      • I am so sorry, my sincerest regrets over your wife's suffering. I am so happy that you are speaking out about it. This should never happen..
        • D Someya Reed
          Thank you and you're right, it shouldn't happen...even once. When this was occurring, my wife asked me to promise her I'd do everything in my power "to make sure what happened to me in hospice doesn't happen to someone else." I made that promise over four years ago. What she asked of me should never have been on her mind or escaped her lips. I've never believed that death absolves one of promises made to anyone and especially those we love. I've now heard four years of stories from people who've had similar problems but thankfully, for their sakes, none that surpassed ours. There is far more to our story including and up to attempts, for reasons unknown, to take control of my wife's body upon her death. Common to all those who have shared their stories is their support for me but absolute fear of coming forward. I lack that fear, especially whenever it has meant coming to my wife's defense. One of the nicest things she ever said to me was that she always knew I would keep her safe (along with her grandmother telling me, on the day I "met the family," that I was her granddaughter's samurai). Though there were a couple of times I had to remind my wife to "call 911 first, then me." But she knew who would get to her first. There are those in the industry and government ranging from those who intentionally mislead, to those who are uninformed and to those who are misinformed. Many have tried to paint me as the "distraught and grieving husband" following an "unhealthy" path. They claim that "for my own well-being" I should drop this, "move on and find new joy in my life." When that didn't work, there are those who have resorted to threats. My sole focus is on those who can't stand up for themselves. I want everyone to have "real" tools they can actually use to make reasoned and informed decisions and to not be given "marketing material" disguised as tools. Unlike any other discipline in medical care, this is a one shot chance to do it right. And that's why venues such as this blog are so important especially ones that have truly caring and compassionate people at the helm and as readers. I know that sounds lame or trite but I absolutely stand behind it.
  • Ray
    While I agree with all you say I fear there is an element here you just can't control. Over the years I have come in contact with many doctors and found some very distant and 'cold' while others were more warm and easier to deal with. I think a lot of this has to do with the individual doctor. That said I think it is important to discuss with young doctors the need to be compassionate with their patients.
    • Liz
      I also think some of them need told HOW to be compassionate. The "emotional IQ" of some doctors is pretty low (just like in any other profession) and they need more help translating "compassion" into behaviors.
  • IBS
    Although I never wanted to say my name, I have had two doctors that were wonderful to me. From 1995-1996, Dr. Salwitz was my MD. He was very kind to me; a wonderful compassionate man. Due to insurances changes, the office switched me to Dr. K. I was his patient from 1996 through 2013; a total of 17 or 18 years. If I was happy, he knew...If I was sad, he knew. He could read me just by looking at my eyes. If I was a kook on that day, we would laugh together. Life is so short and shouldn't go by without telling certain people in my life that made a difference for me. I felt as if I wasn't just a patient; they made me feel as If I was a person and not just a disease. There is nothing better than feeling safe with an MD. plus if they look good one day, tell them. For example....I always wear funny socks and now Dr Karp wears funny or beautiful ties. It makes me forget why I'm there. I feel MD's must laugh during the day too. Reciprocate and that's how they know the real you, as someone mentioned, you will get to know the real man/woman beneathe the white coat. The white coat will turn into a red, bright yellow and pink.

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