Tuesday, January 20, 2015

Pseudoscience Didn't Work


13 months ago, in late November of 2013, my husband of 25 years was diagnosed with stage IV follicular Non-Hodgkins Lymphoma. It was found by our gastroenterologist during a routine colonoscopy. A small lesion had begun to form in his colon which was the earliest sign that the cancer was attempting to invade organs from the lymph system.

He had a bit of a painful bone marrow biopsy which let us know the disease had not invaded his skeletal system. Then we spent a long day down at the MD Anderson (now UF Orlando Health) Center in Orlando having tests after tests run. The entire time, my husband was convinced it was not a real thing..that it was a "false positive" until his results came back from the PET scan, MRI and blood work. His scan showed him lit up like a christmas tree with affected nodes in his neck, chest, armpit, abdomen and pelvis. He acknowledged the reality and we got to work. We were referred to a really great oncology group and Dr. Johnson and Dr. Sheikh began mapping out the battle plan.

In January, 2014, just 3 weeks before my husband was to begin chemo, I was rushed to the ER with acute pancreatitis. They told me that it was good I had come in because that condition could be life-threatening. I was put on an IV and given nothing to eat or drink for 3 days and then went into surgery to have my badly diseased gall bladder removed. My pancreas recovered. All I can remember is asking the doctors and nurses to please get me well so that I could be with my husband when he started his chemotherapy. I was lucky. When my husband walked into the infusion center at South Seminole hospital, I was right there with him.

For 5 months, every 28 days, he had two days of chemo. His treatment was what is considered the gold standard for this particular type of NHL, two drugs, Rituxin and Bendamustine. As the drugs built up in his system, the side effects started to really show and he would have what they called a "chemo crash" about 2 to 3 days after his treatment. He took his nausea meds and slept a lot and ate lightly and took short walks and, the entire time, he kept at his part-time job as a crossing guard at a local elementary school. I started calling him "Superman." After two rounds of chemo, they did a CT scan that showed the disease over 80% wiped out and, after five rounds, he was completely clear. We were ecstatic.

I need to explain that we are atheists and skeptical thinkers. We didn't pray, We didn't go on any of the many weird and outlandish diets that we were told we must because of very different reasons by people whose evidence of the efficacy of said diets was only anecdotal or the result of some very incomplete and biased "studies." We went with a balanced diet, light exercise, adequate rest, keeping to a routine as much as possible and we investigated and approved of the science used. He was told he shouldn't eat meat. That didn't go down well with him. He is not a big over-eater but he likes his chicken, fish and occasional red meat, his beer and occasional glass of wine and his sweets. He doesn't smoke. I will say that he did have a little bit of "herbal" help with the side effects but everyone, doctors, scientists and lay-people, know THAT helps.

We had the last of his every 4 month CT scans, today and it was clear as a bell. So now, he will go to every 6 months and then to every year. Are we grateful? Hell yes, we are! We are grateful to the scientists who did the research, the oncologists and infusion nurses who followed that protocol and monitored his progress and the emotional support we received from family and friends. We could not have made it through without that.

But no, we don't thank an invisible deity, of whose existence we have no palpable evidence. We did not indulge in pseudoscience and don't think that "healing energy" exists unless that's another name for love. We DO believe in love. My husband is well-loved. Knowing one is loved has a lot to do with our attitude when facing illness and adversity and it helps. It isn't a cure, but it helps us bear the worst of the discomfort and the bad days that come with any chronic illness.

Today, I learned that a young girl, a child, died after refusing, with her parents' blessing, to continue chemotherapy for leukemia. Rather than admit that refusing the treatment caused this little girl's death, they are saying that she died of a stroke because her system was damaged by the chemo she had prior to her going on alternative and "spiritual" care. I don't buy that for an instant. She was encouraged to trust superstition and pseudoscience and it didn't work. I will be willing to bet that behind every wild claim of such methods actually working, there is a rational, scientific reason why a patient survived or improved that has nothing to do with wheat grass enemas, massive doses of supplements, laying on of hands, prayer or christian yoga (I wonder how that is different from regular yoga).

There are a lot of people who fight cancer who will not be as fortunate as we are. Research is ongoing and early detection is making a big difference. Genetic research is opening new avenues for possible treatments and cures. But, it won't make it in time for some. Some might have some hidden well of physical healing abilities within themselves that will come in to play and will be hailed as a "miracle." I am all for that. But I am sick and tired of prayers and pseudoscience being chosen over the real science, especially when I hear that a child has died from such foolishness.

Like a friend said, who is going through this awful battle with a loved one, "If prayers and wishes were money and marijuana, we'd be doing better than we are." And no, there is no proof that weed cures cancer. It just helps make chemo and the other symptoms bearable and helps the appetite along. When you have cancer and are taking chemo, eating is not easy. Marijuana makes that easier.

We are celebrating because we have the right to. My husband, with the help of science, beat the beast. But we are  not forgetting those still fighting and those who lost the battle. If you want to do something for these people, support cancer research. A few bucks to buy a pipette for a research lab goes a lot farther than prayer for actually doing something.


No comments:

Post a Comment