The biggest surprise to me when I commenced cancer treatment is that little goes according to plan, and nothing is black or white. Even with a garden-variety cancer such as my metastatic colon cancer, a high percentage of my symptoms from the cancer and from the treatments were inexplicable to even the renowned specialists taking care of me. Consequently, their ability to predict the consequences of undertaking a given treatment seemed to me to be very limited-- not by their undoubted expertise, but by the primitive state of the art.
While no treatment option was ever presented to me as a choice between quality of life and quantity of life, I did read implicit understanding of my priorities into my medical oncologist's approval of my decision to postpone further chemotherapy, in the form of FOLFOX, for as long as possible after the unsuccessful surgeries. Even if FOLFOX had proven to be efficacious for me, as it did not, it was never presented to me, and it is by no means clear, that commencing FOLFOX earlier would theoretically have prolonged my life longer than commencing FOLFOX later.
I am in awe of the doctors, nurses, and aides who take care of cancer patients. Certainly, I cannot imagine that I would be able to go to work each day and watch my patients and their families suffer, knowing-- whether they are in denial or not-- that so many of them will die before their time, often in the wake of horrible agonies. From what I have read and observed, the ability to compartmentalize, the ability to focus on fighting death, and the belief in helping to advance the state of the art are critical to oncology professionals maintaining their morale. Such a milieu is not conducive to advising a patient that a treatment option might enhance quantity of life but would almost certainly decrease quality of life. Thus, in my limited experience, a cancer patient trying to weigh a strategic desire for quality of life against an actual treatment option is left to his or her own devices.
Now that I am officially in palliative care, it is clear to me that the ethos in either hospice care or plain palliative care is for the patient to ingest various drugs to deal with pain, blockages, and other symptoms. In a typical scenario, when the patient becomes sufficiently helpless, the patient is moved around in a hospital bed-- temporarily installed in his or her home-- to avoid bedsores. Eventually, he or she may well be in diapers and in a coma or otherwise has no more desire for food and water. If do-not-resuscitate orders are in place and are actually observed, the patient is finally allowed to die, in a process that can legally include the withholding of all sustenance including liquids and the administration of pain killers that may have as a side effect, but not objective, the hastening of death.
In summary, the oncology industry, for understandable reasons, is geared towards promoting quantity of life, even at the inadvertent price of compromising quality of life.
I made good use of my respites from treatments. During the first break, in June and July of 2009, Susan and I socialized and even went to Saratoga Springs for six days. During the second break, after I recovered sufficiently from my second surgery in early August, we resumed travel: Paris; multiple trips to Florida and seeing relatives and friends at points on the East Coast between Boston and Southern Florida. During my penultimate trip to Florida, I was able to be with my father during the last hours of his life; and Susan and I went to Australasia for a month.
Even now, I have shards of quality of life that I would not have if I were in the throes of irinotecan/Erbitux. This morning, friends are driving Susan and me to New Haven to view the world's largest Stubbs collection, bequeathed to Yale by Paul Mellon.
Would I live longer had I submitted to irinotecan/Erbitux? Probably, if that chemotherapy had proved to be efficacious for me. In any case, delaying death might be a mixed blessing, given all that is wrong with me now and with my belly getting bigger and more uncomfortable every day. Because of cancer's endless supply of tricks, one must be careful about making wishes.
My growing belly vexes me constantly. Up until early 2009, I ate robustly and got some three hours of exercise a day, including an hour of walking. I weighed about 165 pounds. Today, I can eat very little, and I get very little exercise. Consequently, except in the belly, I am the thinnest that I have ever been in my life. I weigh 180 pounds.
If I could be granted another 30 years of life in my current condition, would I wish for it? No, I would not. It follows that I have no interest in trying to withstand six months of a hideous chemotherapy, like irinotecan/Erbitux, in hopes of postponing the relief of death for several months.
