Saturday, February 25, 2012

I'm In The Mood For Love And Spontaneous Remission

In the early 1990s researchers at the Institute for Noetic Sciences catalogued cases of "spontaneous remission" of cancer and other diseases that generally don't tend to disappear without treatment. They hoped to create a database from which researchers could draw in order to study these mysterious cases of health and healing. They created the database, but no one has actually studied these people.

I liken their work to a program that the British Royal Air Force had during World War II. Aircraft that performed far better than expected were studied, rather than attempting to learn from the ones that malfunctioned. Fighter planes were thought to require maintenance and repair after a certain number of hours of flying. The demands of the war required some aircraft to fly extended missions. Some planes malfunctioned and did not perform well, and some exceeded expectations. Rather than study the planes that broke down, they investigated the planes that performed well.

When I heard about this program, I wondered why we don't do the same with people? Most of medicine is based on studies of what's wrong; why not study what's right with us and extrapolate how we can use that to guide our health care? Why don't we study people who seemingly spontaneously recover from diseases that normally lead quickly to decline and death? Recently, Kelly Ann Turner, a PhD candidate at University of California at Berkeley studied spontaneous remissions of cancer. Here's a link to her thesis:
But if you don't want to read the whole thing, here are the 6 things she found in common with the people who thrived:
  1. Deepening one's spirituality.
  2. Trusting in intuition regarding health decisions.
  3. Releasing negative and/or repressed emotions.
  4. Feeling love/joy/happiness.
  5. Changing one's diet.
  6. Taking herbal/vitamin supplements.
What's interesting about this list is that the specifics don't seem to matter:
  1. There is no spiritual path that is best. It just seems important to feel connected to something, anything greater than one's individual self. This is not about religion. It could be as simple as a daily walk outside appreciating nature.
  2. Which health care decisions these people made was not as important as how they made them. Trusting that they each made the best choice, made that choice work better. This has also been the overwhelming theme amongst people who have been a part of the Commonweal Cancer Help Program.
  3. What the repressed emotions are, and which approach to use to address these emotions, is not as important as becoming aware and not dwelling on the negative effects of dwelling on them. I would say "facing" or "accepting" rather than "releasing," but it's not my thesis. I believe that things we don't deal with keep coming up, and that once we face them, they can lose their charge and their detrimental grip on us.
  4. No one would argue about the beneficial effects of feeling love, joy, happiness, (and I would add pleasure.) I strongly believe in feeling all emotions and not excluding the "negative" ones. Negative thinking is clearly toxic, but so is positive thinking if you don't really feel it. With my aversion to feeling drugged with pain medication I have found that experiencing love/joy/happiness/pleasure is the best pain relief around. While I'm feeling pain in one part of my body I can always find another part that feels pleasure. Then I can choose which sensation to bring into the forefront of my awareness. I can feel sad and angry about living with cancer, but profoundly enjoy a good kiss or a massage. I am convinced this is good for my health.
  5. The specifics of what diet to eat are not as important as developing a consciousness that guides you to eat with more sensitivity once you've been given a diagnosis.
  6. Which supplements to take is not as important as the awareness that comes with taking them.
It looks like I'm with the program in all 6 categories. Perhaps that is part of why my bone scan (of 2/15) is looking good! There is no spread of cancer, and what's there looks like it's shrinking. Bone scans are not generally used to quantify whether a tumor is getting better, CT scans are better at that, but require a huge amount of radiation to create that picture. We opted to save the CT scan for later, since there's no bad omen to follow. All of us who looked at the bone scan together couldn't help but notice that the places with metastatic tumors look smaller. Even though it's not scientifically "official" I'm happy to look at a picture in which my tumors look smaller.

Unfortunately, the only thing that does look worse is the arthritis induced my my aromatase inhibitor (estrogen blocking medication). My hands, wrists, feet, ankles, knees, spine, elbows, and shoulders look more acutely arthritic. For some mysterious reason, my hips still are totally untouched by arthritis! It's somewhat validating to have the things that hurt light up on the scan. It assures me that I'm not just imagining it. I wonder what things are common to people who don't have side-effects from medication?

While I can't claim spontaneous remission - I still have metastatic cancer roaming through my body, I can claim to have beat the sadistics, oops I mean statistics. 90% of women with my diagnosis don't make it through the second year, but here I am getting better, not worse in the 2 years and 4 months post-diagnosis. I also can't claim remission, because I am treating the cancer with a medication. My improvement is not technically "spontaneous", but I can claim to be moving in the direction of remission because it is statistically unlikely for me to be improving as much as I am. You can see the mental gymnastics I can get caught doing around this subject. The mind is a bad neighborhood; if I stay there too long I get mugged.

Regardless of statistics and theses, I am doing fairly well. I now get another chance to live my life and attempt to not dwell on the results of the next bone scan. I see my oncologist every 3 months and do simple blood tests. If I'm still doing well with no new symptoms in 6 months, we might postpone the next set of scans for a whole year. Next year, however, regardless of how well I'm doing, we need to do the big overview and get the full-tilt-boogie of work-ups: bone scan and CT scan, along with the usual blood and urine tests.

I'm away this weekend with my old Osteopathic study group in Massachusetts. Although the intellectual stimulation is great, for me, it's the love fest and schmooze factor that called me to return to the group. I've known a few of the members for 30 years, and most of the rest for at least 20. There's something about being with old friends that I am sure stimulates my immune system. Osteopathy and Love is good medicine.