Sunday, November 9, 2014

The Calm After the Storm

The social worker I see on occasion at my Portland clinic said that it is common for people in my situation to go into survival mode during the initial crisis and treatment for metastatic disease.  You know, you put your head down, embrace the suck, and do what needs to be done.  It is clear that this is exactly where I have been since late May.  I research, I write educational pieces (read: unemotional pieces), I research, I think logically about next steps, and I conserve energy to manage my treatment effects.  I’ve been having chemo since earliest June and haven’t spent much time imagining what happens when the initial crisis management phase of this shitstorm actually goes away, but it is about to ratchet down a few notches.  After eight Taxotere treatments (the actual chemotherapy drug in my regimen), I am confronted with the simultaneously very desirable and very terrifying break from it on which I am now embarking.
Of course I want to be off of chemo.  Chemo SUCKS.  I am ready to lose the corpse-like taste in my mouth, the intermittent nausea and continuous exhaustion, the way I am out of air just going down the driveway for the mail and then back up, the prickly, insanely itchy skin, the baldness, the lack of all the other hair, the runny, irritated eyes and nose, the peeling fingertips, the diarrhea, and the feeling (reality?) of having aged fifteen years in the last two.  But the chemo is killing cancer, has killed a bunch of cancer a second time.  Logically I know that the two targeted biologic drugs play a large role, but what if that role isn’t the starring role?  Ideally, continuation of Herceptin and Perjeta every three weeks will give me some undefined length of time to enjoy life without chemo and without enough cancer in my system to kill or alter me too terribly.  The trouble is no one has an inkling of how long that might be.

Aside:  Can I say – I simply cannot imagine being a medical oncologist.  I would know exactly what to do to treat a patient, and if I were an excellent MO I would be really good at talking with my patients and answering their questions honestly.  I would be up on the latest treatment advances and clinical trials, and would be confident I was offering my patients the best research and data-driven treatment options.  And yet, as much solid data are behind these treatments, I simply would not know whether and how dramatically my patients would respond.  Basically it is all a crap shoot.  And as a doctor who has taken an oath to heal the sick, I would know just how little is in my control, no matter how brilliantly I do my job.  Like my patients, I would live scan to scan.
According to the Cleopatra Study results, adding Perjeta to Herceptin and chemotherapy as a first line treatment of metastatic breast cancer increased median overall survival by 15.7 months to 56.5 months, an unprecedented and definitive increase.  The logician in me cannot leave well enough alone and reminds me that this is median overall survival.  Some of us will get more, some will get less.  None of us making our bargains with treatment knows to what decimal point our own lives will measure out.  And neither do our doctors.  It is what it is.  

So… on leaving the initial crisis mode:  As the sympathetic nervous system (fight! flight! both!) calms down, the parasympathetic nervous system takes over (maybe the bear that was chasing me is gone), restores normal heart rate, and slows the adrenaline.  Obviously this is somewhat metaphorical, as I have not been living for six months in a literal “fight or flight” mode.  It is just a little bit fun to try to recall my physiology lessons.  
Now, with the initial chemo winding down (hopefully for a while), there isn’t the distraction necessary to avoid acknowledging the certain shortening of my life.  My social worker cautioned that as the initial difficult treatment period ends, Other things might come up.  Like, oh, feelings.

This is the problem of leaving the bomb shelter, however temporarily.  Now there’s time to think, maybe enough energy and brain space for a change to contemplate the existential issues surrounding my disease.  Every few weeks it seems, someone in my online support group dies.  There is not the remotest possibility of becoming accustomed to this. One day it will be me. 

It’s been real (as we used to say when we were cool) perfecting my eye drop accuracy and eyebrow pencil proficiency.   
It’s been real distracting myself with the daily care of a tiny baby puppy.

It’s been real reading reports on treatment advances and study outcomes, making myself feel coldly intellectual.
It’s been real feeling sick, tired, and mopey, hunkered down and hermit-like, avoiding as much as possible the well-meaning but pitying looks of people I encounter.

Goodbye to six months of chemo-land, and a shy and reluctant hello to those Other things, whatever they may be.      

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