Wednesday, July 11, 2012

I'm (relatively) fine - blogging will resume soon

I have a frightening number of emails in my inbox from those of you concerned about my lack of blog entries. I keep thinking I'm going to answer you all individually and get some inspiration to start blogging again, but writing just isn't happening easily these days and I have an aversion to pushing against resistance. It's good medicine for me to notice when I feel like I have to brace myself and push, and then choose another path.

I'm doing (relatively) fine. On the cancer front, there's nothing new. My bony lesions are still there, slowly shrinking and remodeling. I've had issues with my kidneys that have effected my blood pressure, but that seems to be manageable right now. The side effects from the anti-estrogen drug are worse than the disease, but I'd rather have joint pain than cancer. You must know I'm doing everything possible to care for myself on every other level to cope with my situation.

I'm doing well enough to bond with my new home and indulge in the simple pleasures of mundane life. We're making friends and totally loving our massively simplified life. Summer in Vermont is amazing.

We're off to Montreal (an hour and a half drive) for a 15th anniversary celebration. When we get back we have my step-son Ben and his girlfriend visiting for a week, on their way home from their European adventure. August comes with my next set of scans. You can look forward to a real blog entry mid-August.

I'm grateful to have you all in my life. I watched a video of Fritjof Capra in conversation with Brother David Steindl-Rast yesterday and he said, "Community is the antidote for consumerism." Ponder the possibilities of how that might influence your life. You'll be hearing more from me in the next month.

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.

Wednesday, February 8, 2012

The "Sitting With Uncertainty" Blog Is Available For Viewing

The "Sitting with Uncertainty" discussion is available now for everyone to benefit from the collective wisdom of the people who have been a part of the Commonweal Cancer Help  Program. You've only ready my contribution. There are about 10 other people's responses in this blog. It is rich. Please check it out.

The link is:

Monday, February 6, 2012

Happy Belated Ground Hog Day

After Thanksgiving, Ground Hog Day is my favorite holiday. Few, if any of us have emotional baggage around this holiday. Those of us who celebrate it don't seem to be burdened or stressed by the rituals surrounding the day. Perhaps the people in Punxsutawny, Pennsylvania are under pressure to put on a good show, but I'm not. Aside from re-watching the Bill Murray film which made the holiday famous amongst us quasi-Buddhist English-speaking philosophers, I utilize the day as a catch-up for what many people do during the other winter holidays. I take time to call people and reconnect, send people cards, notes of gratitude, or bake cookies. And like the character in the film, I remind myself that "I'll do it 'til I get it right" and that "right" involves accepting the present moment and being open to love.

I'm in the middle of my 6-month follow-up battery of tests. I should have all my results back by the end of next week. I promise to post a report soon thereafter and not make you wait with uncertainty and wonder. So far things look good. The bone scan is next Wednesday and that's the test I struggle most with in terms of waiting and wondering. Several months ago, my friend Terri Mason from Commonweal posed the question about how to sit with uncertainty to the alumni group of the Commonweal Cancer Help Program. She is compiling all the answers into a blog to share the wisdom and coping skills of this extraordinary community of people committed to living with cancer with a refined state of awareness. I'll post a link to the full text of responses when she's done preparing the blog. The following was my answer, which appeared in a longer form in a previous blog entry, but it's worth repeating:
My challenge in all of this is to remember I’m the same person I was before the CAT scan. This result doesn’t change my actual life; it just changes what I think about my life. I had an old Indian teacher who used to say, “Your mind is a bad neighborhood. Don’t go there. You’ll get mugged.”
This is the reality of this disease. It is chronic. It will most likely come, and hopefully go, for the rest of my life, regardless of how long that ends up being. I can’t help but want to be special, be a miracle, be an overachiever, be an outlier, and I don’t want to feel like a failure or that I am to blame if things don’t go as I prefer.
This is as close as I get to positive thinking. I acknowledge my desire to live a long life and to have a chance to re-invent my life if I ever go back to doing something other than caring for myself full-time. I want to have more adventures. I want to be with my loved ones and be a part of their lives unfolding. I want to be of service to people again someday. The intensity of these desires and my longing for life feels like my life force expressing itself. How do I maintain this passion for life and yet let go of what I can’t control?
I don’t believe in positive thinking because I don’t believe that thinking is the way to guide our lives. Positive or negative thinking is still thinking, and thinking is not the most powerful force in us. The harm that’s done is obvious when people get caught in repetitive negative thinking, but positive thinking can also make a person blind to that which they really need to be responding. There’s a fine line between positive thinking and denial. And regardless of what we think, our unconscious still exerts more influence than our conscious thoughts. I believe that people who say one thing and unconsciously harbor the opposite are ultimately at much more risk of serious consequences, because they are in internal conflict and discord and not in touch with the necessity of the moment.
So I let myself feel the disappointment, the sadness, the grief, but I don’t dwell on it. It’s like bad weather; it will pass. I try not to let fearful scenarios take up space in my thinking because they are clearly only one possible future. I also try not to dwell on my desire to have my life be mended, because my desires are not reliable either. If I get too attached it makes it harder to cope with not getting what I want when that eventually happens. Inhale. . . exhale. . . It’s good to be alive and breathing as I sit here typing on this Saturday morning knowing that you all will be reading this and joining me in being alive together right now.