the roller coaster of uncertainty.

borrowed from Random Happy Soul

I googled “uncertainty” tonight to try to find a picture for this blog topic, and there were literally thousands of images, quotes, and horrible clip-arts that pointed out what’s obvious to most of us – in the words of Forrest Gump, “Life is like a box of chocolates… you never know what you’re gonna get.”  But I think that any of us that have dealt with cancer, either as a patient, a family member, a caregiver, or a provider can attest that in cancer, uncertainty takes on a whole new level.  Uncertainty permeates every aspect of the journey, from the universal questions of why cancer develops in the first place, to the most mundane treatment details that drive us crazy.  I am positive that the phrase “we really ought to have figured out THAT by now” has passed through my mind (and through my discussions with astounded patients) at least a dozen times per day.

I can only imagine what dealing with sarcoma is like from a patient’s perspective.  In my clinic, I meet people from all walks of life.  A lot of classic type A personalities, including business professionals, doctors, lawyers, entrepreneurs, athletes, engineers, scientists, and philanthropists.  Let’s just say that diligent time management, scheduling, and planning are non-negotiable to these folks and their way of life.  To suddenly be in limbo is a shock, to say the least.  I also treat college students, truck drivers, firefighters, police officers, writers, librarians, and butchers.  To many of them, the concept of extended medical leave just isn’t feasible, as many are living on tight incomes, perhaps single parents, and may not have disability benefits.  What they all have in common is that after a one hour visit with me, life as they know it is on hold.

Imagine how your own life would change if you were told that the next 6 months belonged to your medical care.  Sarcoma chemotherapy cycles are rotations of chemo week, crappy week, and good week, and repeat x 6.  Chemo week is 6 days in the hospital, or a Monday through Friday commitment to our outpatient day hospital clinic.  Crappy week is when the chemo kicks in, and most people feel like they have an awful case of the flu.  The white blood cell count falls to zero (neutropenia), leaving patients without a functioning immune system, and I have to recommend essentially house arrest – “minimize the visitors, don’t let the dog lick your face, no public places like malls or grocery stores, cut out raw fruits and vegetables and sushi, Purell everything that comes near you, and if you have a fever over 101, drop everything and head to the local hospital emergency room as your immune system is on hiatus, and even a simple bacteria or virus can lead to a life-threatening infection.”  If there is a neutropenic fever, patients get admitted for a few days on antibiotics until the white count recovers.  Cultures will be drawn from all bodily fluids, and scans taken – and there’s an overwhelming chance that they’ll show no definite answer as to where the infection came from.  On the “good week”, apart from the doctor visit to plan the next cycle of chemo, and a scan to determine if the chemo is actually helping or not, patients can relax a bit.  Assuming that there isn’t a complication to delay or otherwise mess up the good week.  Stressful?  Yeah…to say the least.

We try to help patients retain control by scheduling a cycle at a time, so that they can plan activities based on how they are likely to feel.  I had one patient who planned a cruise during his good week- when I tried to warn him that his trip could be disrupted by an unforeseen fever, he laughed at me, saying that nothing was keeping him from that.  And lo and behold, he went.

I have a patient who is a professional cyclist.  He’s posted pictures of himself on a stationary bike during chemotherapy – despite aggressive therapy, he clocked in at least an hour or two a day.  “Crap week” didn’t really apply to him.  After he finished chemotherapy, he rode in our Dolphins Cycling Challenge and came in first on the 104 mile ride.

George Fetko Dolphins Cycling Challenge

GF

I generally write for short term disability for a total of 6 months for my average sarcoma patient, including chemotherapy, surgery, radiation, and recovery.  For patients with financial means, or at least good benefits through work, their career goes on hold which can threaten the very core of being for individuals who have put everything into their occupations.  Physicians with cancer especially struggle with suddenly having more free time on their hands than they’ve had since high school.  Combined with the unpleasant switch of being a provider to being a patient, the loss of control and perpetual limbo drags on.  For patients without disability coverage, this time can mean complete financial collapse as they are unable to work and take care of their children, with lost wages and even employment.  I’ve seen marriages and relationships collapse under the pressure.  Roles change, where the person who took care of running the household suddenly needs to be taken care of, and responsibilities shift.  Even after treatment is complete, these issues linger on into survivorship.

Not surprisingly, patients with the most support from families and friends generally cope the best with the uncertainty.  I also find that patients with a strong faith, a sense that someone or something else is leading the way, also tend to manage fairly well.  And there are some patients whose mental fortitude is just unbelievable – if only I could bottle that up, and give it along with the anti-emetics.

As an oncologist in training, I think the hardest thing to grasp was how to come to terms as doctors with this uncertainty, and how to counsel and help patients through the perpetual not-knowing.  “How many cycles of treatment do I need?  How am I going to feel?  How will you know the chemo is working?  How long do I have to live?”  As a new fellow it was like being back in internship again- we didn’t know anything.  The first time I gave chemotherapy was petrifying, even despite the guidance of attendings.  In regular internal medicine, you generally help people with problems in a fairly standard way- you correct high blood pressure, you give antibiotics for infections, and you treat heart failure with diuretics- and people get better most of the time.  In cancer, we give poison, guaranteed to make people sick, sometimes to the brink of death.  There’s no way to know if that patient who looks well now will develop a life-threatening infection from chemo.  There’s no way to know if the tumor will shrink ahead of time- hopefully you have a statistic that you can provide to give some idea, but not always.  And one of the hardest ones for me, you often don’t know ahead of time if the worsening quality of life you inflict in the short term will turn out to be worth it in the end.  But we try, and we believe, and we hope, and we pray.

One of my heroes is a lady in her 50s that came to me with a huge bone cancer in her pelvis.  As I looked at her scans, I saw that she had innumerable tiny spots in her lungs, signs that the cancer had spread.  She needed chemo quickly, and I counseled her about the side effects, and I gently told her that stage 4 sarcoma was very difficult to cure and that we had quite the battle ahead of us.  She looked right at me and told me not to worry, that she just knew everything was going to be ok and that she would beat this thing.  Sure enough, 4 months later her lung lesions had almost disappeared and she went to one of the best centers in the country where half of her pelvic bone was removed.  The cancer was 97% dead.  She fought bravely through pain and rehab, and more chemotherapy, and today she’s almost a year out from surgery, and cancer free.  Here’s a picture where we went fishing together – despite missing half of her pelvis internally, she has gotten to the point where she can climb in and out of her boat without blinking an eye.  Unbelievable.

fishing

Out of the pile of quotes and images on google, my favorite was a quote from Margaret Atwood – “when nothing is sure, everything is possible.”  I meet people every day that don’t follow the textbook – or at least the statistics we try to collect to predict outcomes and help people plan for what’s to come.  I’ve become more comfortable with saying, “I don’t know.”  And I have seen myself how sometimes the unknown is better that what we think is known.  Probably not a bad way to live our lives.


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