Loose Strife

On Friday morning Laura and I consulted with a new oncologist with expertise in breast cancer. Although I hadn’t provided any advance information, the doctor had already acquired Laura’s full case history. She seems to be a very nice doctor who seems particularly concerned about a patient’s total well-being. She also emphasized the importance she placed in being accessible to patients, said things like she would be “honored” to be Laura’s doctor, seemed very proactive in her plans to consult with Laura’s other doctors and get moving on treatment options, and seemed to do a better job discussing technical details of treatments compared to Laura’s previous primary oncologist. In general, she was on the ball and sympathetic.
I already had a good feeling that she was professionally more concerned about effective doctor-patient relationships because I found an interesting article she had written on good communication regarding terminal illness. (She writes, “As oncologists, we provide the matrix against which decisions regarding life and death are made and through which communication travels. If we do not serve as open conduits, surely the perilous roller-coaster ride that bends and turns with mortality at every twist will be darker and more terrifying.” The whole article is worth reading.)
While I am not angry or bitter with Laura’s previous oncologist (and I’m sure Laura agrees), in the end we think her bedside manner could have been better and she could have been more aggressive dealing with some of Laura’s bad symptoms over the past months. However, it’s very important to realize that an earlier diagnosis of Laura’s spinal fluid metastasis would almost certainly have had no impact on Laura’s prognosis and things could even be worse. There’s no way to know. It’s all “what if” upon “what if”, that’s just not worth wasting negative thoughts thinking about. But if you insist, know that things would very unlikely be any different. And also know that every decision yesterday and tomorrow also could dramatically affect this chaotic disease in unforeseen ways, so we just do the best that we can. Cancer, in general, and leptomeningeal disease, in particular, is just not understood well enough, treatment options are not sufficiently developed or tested, and personal attitudes, values, and considerations play an extremely important role in terminal illness. As the neuro-oncologist told us on Thursday, there are no obvious answers and no bad decisions.
To take a quick tangent, I will say that surely there are some bad decisions and most of those are related to wasting valuable time on quackery. We’ve recently been contacted by several well-meaning individuals — some just passing on information and others urgently demanding — telling us about non-scientific methods for treating cancer. This is a touchy topic for many and I can hardly claim authority on all theories of cancer or treatment. Instead, since we’re not experts, we have made the most prudent decision, which is to put our confidence primarily in the professionals of conventional medical because these individuals are experts, progress in conventional medicine is done in an open, scientific, and skeptical manner, and the practitioners’ basic aim (to expand on Hippocrates slightly) is to do no harm that is not believed by evidence to be offset by greater good for the patient. On the other hand, putting our faith in unscientific foolishness is a waste. (Taking one example, we have been encouraged to consider expensive diet supplements whose “quantum state” is not in “cellular harmony” because of “degraded resonances”.) We are absolutely not discounting the possibility of inexplicable or unconventional cures and we readily recognize the possibility of improved quality of life due to a vast amalgam of unconventional sources ranging from prayer to diet to acupuncture to, well, you name it. But it is a hope resting in practicality and a desire to live fully while one can, not an absolute fear of death, that drives Laura’s decisions.
Laura’s radiation oncologist is one of those who truly holds out sincere hope. This doctor is a wonderful woman who has been unbelievably generous in the short time that we have known her. After seeing the two oncologists at Dana-Farber this week and also talking with Laura’s new oncologist, the radiation oncologist squeezed us in on Friday afternoon to begin whole brain radiation (WBR). One of the issues that had to be decided was the number of weeks of treatment. The cumulative amount of radiation is the same, but since the radiation is administered every day, a longer treatment is a lesser daily dose. Generally Laura wanted the treatment to be finished as soon as possible, so she would be free to do other things. But shorter treatment increases the risk of long term side-effects manifest a year or more afterwards. I have to admit that I was pushing for the shortest (two week) treatment. However, the radiation oncologist urged Laura to choose three weeks, saying with tears in her eyes (not pleading, just deeply emotional) that she wouldn’t be doing the radiation if she didn’t truly believe that a remission was possible. With such hope, the increased long-term risk was not worth a week.
So three-weeks (15 treatments) of radiation began yesterday (Friday). The radiation oncologist opened her office today, Saturday, just for Laura to get two treatments under her belt as soon as possible. However, Friday evening we had a frightening episode.
About three hours after the first radiation treatment just as Laura had finished dinner she experienced the most severely painful and prolonged headache that she has ever had. She felt like her head was going to explode. When it finally subsided, she became nauseated and wretched uncontrollably for a long time, sometimes in a half-conscious state. I was scared and when it seemed to start repeating, I called the radiation oncologist. I expected her to say something like this is a known, possible side effect and tell me to increase her anti-inflammatory steroids or to call again if it persisted. Instead, she wanted Laura to come to the ER for an emergency brain CT scan because she worried it could be hydrocephalus, “water on the brain,” which is a dangerous build up of pressure in the cerebral spinal fluid (CSF). Increased CSF pressure is just what the neuro-oncologist had diagnosed, but so far there had been no visible evidence of it in the previous brain scans — the last just two weeks ago. However, the situation could change rapidly.
The weather was atrocious. In Ashfield there was two or three inches of sleet, rain was extremely heavy, and the roads were uncleared and flooded in numerous places. Thankfully Laura’s parents arrived to stay with us on Thursday, so we left the kids behind and drove to Northampton through an icy mess. As we drove, her radiation oncologist lined up a technician and radiologist to read the results to be ready when we arrived. She even checked on the status of a neurosurgeon, if one was needed. But within about an hour from leaving home the results were in and there was no change from the previous scan. Laura was feeling just fine and back home we drove.
I felt particularly frustrated. Frustrated that I called, frustrated that the doctor urged us to come in, angry with the weather, and even sort of frustrated at the negative result. If her scan had shown swelling, then at least there would have been something that could have been done — namely, a shunt could have been put in. Instead, it remains a mystery why she had this episode and why her symptoms seem to be worsening over the last several days.
Laura slept very well. And there were no mega-headaches today (Saturday). Radiation was uneventful and nothing remarkable happened afterwards. But Laura had repeated troubles all day getting around — getting to and from the car, moving from room to room. What typically happens is that she gets up, starts to move, and after about 30 seconds loses strength, wobbles and trembles, and then has to sit. No loss of consciousness, just lots of sitting on the floor or chair waiting for things to subside and restart. The broken leg makes the mobility problem more complicated. It is hard to believe that I wrote just a few days ago how we were both “briskly walking down the wintery streets of Boston just like everyone else.”