Confronting the Six-Letter Word
Finally, they said it. Strangely, it was a relief. There were no more ambiguous references. No pregnant pauses. Just the word.
We expected to hear the word, though it never before entered conversations with the physicians. Today the word became part of the dialogue.
Our daughter has cancer.
Technically, she is diagnosed with low grade glioma in the form of leptomeningeal astrocytoma.Her prognosis is good. Dr. Finlay likened her condition to a chronic illness, abstractly analogous to asthma. In her present state, she is not a patient with terminal illness. Her doctors believe her tumor is treatable with a manageable regimen of chemotherapy. Radiation is happily not part of the plan, and the chemo cocktail they recommend will not cause her to lose her hair. The pathology of the cells biopsied showed very slow growth. Dr. Finlay commented that these cells appeared to be dividing “in spite of themselves.” That means that we have ample time to wage war against the disease.
Jordan’s case is extremely rare. Dr. Finlay, who has been treating cancer patients for more than 20 years, has only seen three such cases in his career, and Jordan is #3. Her tumor is diffuse, meaning that it is not focalized in any region of the brain. There is no “lump”. Instead, her brain is covered in a mucus-like coating. In Jordan’s case, this coating is comprised of cancerous cells that are under-achievers – their sluggish reproductive habits explain why she has looked and felt so healthy for nearly two years since the onset of her first symptoms. An advanced chemotherapy regimen aims to reverse that trend and bring the cancer under control.
I like Dr. Finlay. Before you start sending me emails advising me not to be persuaded by the effect of personality, make no mistake, I will get second opinions. In fact, Dr. Finlay supports this decision. He offered full cooperation and advised me to do more than just send clinical test results and scan data. He wants to furnish tissue specimens from the biopsy to the neuropathologists of our choosing. But that’s not what I like about Dr. Finlay. It’s not his quiet confidence, either. Or his pedigree, which reads like something out of a Michael Crichton novel. I like Dr. Finlay because he is a cancer survivor. He knows the disease well because he fought it and won. His point of view on how to treat the disease while also ensuring a high quality of life for Jordan gave Jeanette and I some much needed optimism.
Now for the bad news. Our little girl is still out to lunch. She goes through periods where her eyes are empty and she is less responsive. An EEG was ordered this afternoon – a test to check her brain wave patterns. We suspect she may be having absent seizures. If so, this might explain why she’s recently had some trouble remembering things. Her brain is sleeping on the job. This will sound funny, but I was relieved by the cancer diagnosis and “freaked out” by her mental state. It’s hard to witness the lapses in her spirit. Those who know Jordan know that she is a salsa spiced hot with flavor. She’s usually bigger than life, excessively verbal and often outrageously expressive. Today, her main vocabulary word was “yah.” Every question was answered with “yah.” She watched the television with an expressionless face, only the hint of a smile. Her large eyes were fixed and trance like. There is hope that this symptom, too, is reversible. If she is, in fact, experiencing absent seizures, we are told there is medication to counteract and control the condition. Her neurosurgeons believe that these symptoms could be a side-effect of surgery that will pass with time. As one of the neurosurgeons reminded us, “this was a surgery that, if performed on an adult, would be far more debilitating.”
She could come home tomorrow. I am apprehensive about this. She has poor balance and can barely stand on her own for very long. I’d prefer she stay at the hospital another day for further observation. At the least, I’d like her to spend some time with a physical therapist and a neurologist. She, however, is eager to return to her cats and her brother – in that order. We haven’t talked to her about her diagnosis. We took a walk in the garden tonight to do just that, but she was getting cold and she just wasn’t present mentally. We looked at her with her flaxen locks of hair extra curly from the gelatin used as a conductor for the EEG. She was an impressionist painting, full of light and beauty made pink by the dusk. Something about her was distant and soft. We decided to wait until she was more alert to have the discussion. I know she will handle it well. This is something she can fight, and Jordan has never shied away from a fight.
When I was in business school, they administered a number of psychological tests to all new students. The object was to determine what kind of manager you were. One of those tests was called the “locus of control.” I was asked to answer several questions on a standardized questionnaire. Based on my responses, I was scored on a scale from 1 to 7, where 1 indicated that I had an entirely “internal” locus of control and 7 indicated that I had an entirely “external” locus of control. The average manager should have a score of about 4. My professor told me that I was the only student he could remember who scored a perfect 1. He advised me to rethink my “life paradigm”. Some things in life just happen, he said, and there’s absolutely nothing you can do about them. Dr. Finlay believes this is Jordan’s case. Her cancer is not a result of bad genes or environmental influence. It’s just bad luck. She can, however, control how she manages this luck. Her cancer is treatable and she is capable of fighting it and living a productive and healthy life. That is what she will do. And one day, when she is complaining about the grey in her hair, and lamenting the fact that some children call her grandma, she will tell others how life sometimes deals a bad hand. She will tell them that the cards don’t always determine your fate. Sometimes, they just alter your strategy.