I Say I Want a Resolution

One year ago, I finished chemotherapy. According to the oncologist, that’s when the countdown (count up?) of survivorship begins. Not with diagnosis. Not with surgery. But the end of chemo. So this has been the first year of my survivorship.

With that year comes a new look

And a new perspective.

I am – like most of us – looking back to make resolutions going forward. I’ve spent the year immersed in healing techniques on this journey toward wellness: colorful stones and other good health charms, massage, Reiki, acupuncture, therapies involving sound and mind, prayer, yoga and many other approaches.

And this is how it all shakes out for me (your mileage may vary):

I don’t know if the stones and charms make any difference, but it’s comforting to have them on hand (or in pocket).

Of the various mind/body therapies, craniosacral, yoga, sound healing, and what little meditation or breath work I’m able to do seem to help most. Through these I’ve recognized the essential importance of working out stress through the body and voice (in singing and chanting, not just talking). Talk therapy is good, but limited, and the body has its own energy that dispels, perhaps more effectively, the tensions of the mind and spirit.

I wouldn’t say my body actually talks to me (though I did hear an internal voice saying “I’m in trouble” shortly before the lump appeared). But I can now read its signals better and identify when it feels clear. The yoga and sound therapy in particular have changed my perspective. I see myself less as a single, solitary being holding on to concerns and events and more a spirit connected to the flow of life.

This change in perspective is difficult to describe, but I think now in terms of letting events and worries flow through me instead of getting stuck in me. It’s that process of “letting go” that we hear about, but for me was only an intellectual concept before.

So that’s looking back.

What resolutions take me forward?

This year, I’m limiting it to one: Mindfulness.

Mindfulness appears in Buddhism as the concept of being in the “ever-present now.” In his book, A New Earth, Eckhart Tolle gives this example:

If your current task is to look up a number in the phone book, that is all you give your attention to – looking up that number. It is the only thing you are meant to do, your sole purpose at that time. If you give your full attention to looking up that number, then you are truly alive in that moment.

Strangely, this idea actually appeared in the practical, Midwest American advice my dad used to give me as a child: Pay attention to what you’re doing! (I suspect he might have occasionally said that as a warning, or in exasperation. I was a child, after all.)

Who knew there were Buddhists disguised as accountants in Ohio in the 1960s?

Richard Berger, M.D., at the University of Washington, covered this point in his presentation at a cancer seminar I attended last spring. As he put it, mindfulness is “paying attention, on purpose, in the present moment, non-judgmentally.” Good concepts for anyone, not just cancer patients. Mindfulness enables you to feel like you’re living, not just waiting for something to come or watching your life slip away, wondering if it has any meaning.

I “get” the concept, but am not very good at it yet. Too many years of learning to worry and being “proactive,” as they say in the business world. It’s only recently that I’ve really understood that worrying is a waste of time (and an addiction). It’s unavoidable, sure, but you can get the worry under control. And you do that by being mindful.

Nothing frightening happens when you give up the worry and focus on the moment you’re in. When I’m able to do it, I find relief – space, lightness, breath — it goes by many names.

And there, I think, lies the secret of the fountain of youth.

Prolong your life by being present in it.

Be mindful.

A drop of water frozen by flash

Image via Wikipedia

 

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Of Hummingbirds and Rollerblades

In this post, a collection of items related to my journey, I begin by marking a sad ending.

Last week, as my son and I sat outside absorbing some long overdue sunshine on a quiet summer afternoon, we noticed something under one of the deck chairs — a small, still, feathered body lying limp in the shade of the chair. Without needing to look closely, we knew instantly what it was.  The hummingbird must have collided with a plexiglass panel on the deck. With great sadness, we placed the tender bird in the grave my son dug near some flowers in the yard, and he suitably marked the spot with a declaration of truth.  Here, indeed, lies a hummingbird, one of the companions of my year’s experience.

In my e-mail last week, I received a link from a friend. You know those links, the ones designed to get you to sign a petition about a particular political issue. There are too many of these petitions to keep track of, and you can never be sure whether  the petition arrives at its destination. This link, however, connects to a petition to prevent what’s being called “drive-thru mastectomies.”  In the constant battle between health care providers and insurance companies (which will certainly not end despite the new federal legislation), the insurance companies are wanting to shorten the time a woman is allowed a hospital stay after a mastectomy to 48 hours. Now anyone who has undergone major surgery of any kind, not just mastectomies, knows that it is beyond ridiculous to expect patients to be ready to go home in such a short time. I signed the petition, hoping never to have to fight that battle myself.  If you’d like to sign, you can find the petition here:

http://www.mylifetime.com/my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition?q=my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition

If you’d like to verify the petition or read the history of the legislation behind it, which has been stuck in committee in Congress for years, you can go to Snopes.com: http://www.snopes.com/politics/medical/mastectomy.asp

If you’re not familiar with Snopes, you should be. It’s the best site to fact-check the various e-mail petitions, chain letters, and urban myths and legends that circulate in cyberspace. (The name of the site comes indirectly from a family of characters in William Faulkner’s novels. If you know those characters, you know the irony of the name for the site. The Snopes’ would never be clever enough to think up such a service. In fact, they’d likely contribute to the legends found there.)

Last week also brought a few spots of humor.  A woman in the U.K. sent me the link to her blog about navigating chemotherapy with style and humor.  You can find her here: http://glamotherapy.wordpress.com/

And I credit my brother for sending me this link, which is too good to save for its corresponding holiday:

The Dad Life: http://www.youtube.com/watch?v=DOKuSQIJlog&feature=email

And here, for the moms, is the companion piece:  http://www.youtube.com/watch?v=80olbDws8r0&feature=related

At the ending of this post, I’d like to mark a couple of beginnings. First is a nod to Western Washington Oncology, the center where I have undergone treatment.  The staff and physicians at this center are the ones who saw me through chemotherapy and radiation and connected me with all those supportive ancillary services — massage and Reiki, acupuncture, naturopathy, yoga for survivors, and a counsellor , all under one roof, — which have made the burden of treatment easier to bear. As of next month, patients who are newly diagnosed with cancer can have an initial meeting with their entire medical team and support staff, which includes a patient navigator to shepherd them through the overwhelming and complex maze of cancer treatment.  My conversations with friends from other parts of the country indicate that such an approach is not common. So here’s to a new way of helping patients at perhaps their greatest moment of need.

And finally, with the return of summer and my strength, I have begun again to don my rollerblades.  Here’s to many days of  zipping ‘round parking lots in the sun.

Looking for My Balance Again

Now this is one of  the holidays I like to acknowledge: St. Patrick’s Day, when the leprechauns appear, if only in our imaginations, and the city of Chicago, city of broad shoulders, turns its river green, on purpose.  This is a fun holiday — not like stuffy ol‘ Presidents Day — along with April Fool’s Day, May Day, and the Japanese holiday of Setsubun (early February, when the custom is to throw roasted soybeans around the outside of your house to dispel demons and the bad luck they bring).  I might just don that metallic green wig I was given.

Speaking of hair — I received a few comments about the photos attached to the last update.  One person said they didn’t look very good.  (I agree.  My regular photographers were off duty, so I took those myself.)  Another thought they were cute.  Someone else said I have that “lesbian look.“ And my brother says I now look like him.

I’ll choose to consider that a compliment.

It’s been a week since the last of the cancer treatments, and I’m starting to realize how all-consuming the trek has been. Now that the trips across town have stopped, I feel rather like the treadmill I’ve been on has abruptly been turned off.  You know that jerky feeling of motion, then sudden not-motion.  You sway, stumble a little, and fumble to regain your balance. And then you stand a moment and wonder, “Now what was that?”  This rebalancing may take awhile. No more blood counts.  No Popsicles.  No zap count. And it seems ages ago that I rode the steroid roller coaster.  Productive though I was during that time, I don’t miss the dexamethasone high.

No more schedules, or measures of progress.  No more counting down days on the calendar. I now enter the recovery phase.  I still apply the skin ointment, though all the redness and itching have gone.  I am still trying to rid my body of the remnants of the chemical overload, and I still — and always will — think about prevention. Though I greatly admire those who have done it, I do NOT want to repeat this particular journey.

In the realm of helping the body recover, I investigated another type of body work last week.  My usual massage therapist, the one who uses Reiki, books up pretty quickly and so, in the interim of waiting for my next appointment with her, I took her recommendation to see a different massage therapist, one who incorporates craniosacral therapy.  This type of therapy ranks among the many approaches to clearing the body’s energy channels, in this case addressing the fluids.  As she explained it, craniosacral therapy is designed to keep the 70% of the make-up of the body — its fluids (spinal, blood, etc.) —  moving unobstructed, in the same way that Reiki works to keep the energy channels clear and open.  It’s a similar sort of laying on of hands.

Does it work?

Don’t know for sure but afterwards, as I stood up to get dressed, I felt a distinct, pleasant tingling just under my skin, and I paused for several minutes to allow the sensation to linger. Now this particular piece of the journey I would indeed like to repeat.

Last week I also paid another visit to the naturopath, who’s scaled back the plan once again: fish oil daily, Vitamin D every other day, and a recommendation for an herbal concoction to replace the Ativan for sleep.  He said I can go back to the CoQ10, the enzyme that bolsters the heart, for about 6 months if I like.  Despite the recent report in the New York Times, he sees no special benefit in taking aspirin, though I’m going to do it anyway since it helps with heart disease — a hallmark of our family tree.

If I want to go beyond that for prevention, he recommended curcumin, also known as turmeric. It‘s a regular ingredient of Indian food, but needs to be bound with an oil to be absorbed by the body.  So my choice is this —  I could either buy the spice and mix it with those shots of olive oil he once mentioned, or I could just buy the properly calibrated capsules from the compounding pharmacy.

Guess which one I chose?

He also suggested a concoction of  “magic mushrooms” as a preventive.  Not the kind that produce hallucinogens, thankfully (the steroid high being quite enough for me), but shiitake, maitake, and a host of others, including something called turkey tail.  And of course this mixture comes in capsule form. There’s no medicinal element  in nature that we can’t try to put in a capsule.

I’m still wading through my stack of literature about the transition period after treatment. So far, I’m seeing a clear distinction drawn between cure and healing, which is good.  One of the booklets produced by the LiveStrong organization (Lance Armstrong’s group) includes a link to a site where you can document your family medical history to generate a health tree: familyhistory.hhs.gov.  I haven’t tried it out yet, but it ‘s probably time to do so.

As for the next steps in my journey, I’m not sure where they’ll lead.  Which way do I go — back to what was before or on to something new?  (Spring implies something new.) Do I act like it didn’t happen — all the while fearing it will reappear at exactly the moment I‘ve finally forgotten it? Or do I just consider this experience a speed bump on my personal highway?  In that case, do I take the exit to hypochondria, imagining that every odd twinge heralds a return to the highway? So many choices. Which way to go?

Stay tuned…..

Of Presidents, Valentines and Shamans

President’s Day. Another one of *those* holidays.  Here in Olympia, it’s another day to go shopping. A local store opened at 7 a.m. for their special sale today. I can think of nothing that would get me out of bed to go shopping at 7 a.m.

If I still lived in Laredo, Texas, however, I might be moved to get up early, at least in honor of George Washington‘s birthday, which is what President‘s Day used to be.  That’s a town that knows how to celebrate this holiday with style. The festive events are scheduled over the course of a month and include a historical George Washington performance, a Comedy Jam for George, and the Princess Pocahontas Pageant and Ball (to see an example of the elaborate costumes, go here: http://www.wbcalaredo.org/home/events/princesspocahontaspageantandball.html)

There’s also a Founding Fathers 5K run (imagine Thomas Jefferson running in tights and wig), a parade, the Society of Martha Washington Colonial Pageant (as equally extravagant as the Pocahontas ball), and a jalapeno festival, among other events.  Never mind that Laredo was established by the Spanish in 1755, when George Washington was only in his 20s. Never mind that George and Pocahontas never met and probably never even saw a jalapeno pepper. As I learned the year I lived there, it was a great excuse for the town to have a party and my students to miss classes.

Rain continues off an on here, and in Vancouver where the Olympics are underway.  We’re about 300 miles south of that city, and can actually say we’ve been skiing at Whistler, where the ski events are taking place. One hummingbird, Robin Hood, has reappeared sporadically to visit the feeder.  In addition to crocuses, we now have some early daffodils blooming.

My big flower mystery, though, is an interior one.  On Friday, the UPS truck arrived in the driveway and, after tossing our dog the obligatory treat so he could get to the porch intact (the dog picks and chooses when he wants to be a watchdog, so the deliverymen always come prepared with treats), the driver left a long box outside my door.  Inside were a dozen gorgeous red roses with a card that read Happy Valentine’s Day.  The trouble is, I don’t know who sent them.  My husband claims it wasn’t him, and there is nothing on the package or card to indicate where they came from.  So  — perhaps I have a secret admirer?  Or perhaps it was one of you? Anyone want to claim credit???   (I’ll never know if you’re fibbing!)  Wherever they came from, they brightened my day.

The Zap Count: 18 down, 15 to go.  I’m past the halfway point.  Yippee!!!

My visits to the radiation center progress routinely. In, out, zap, zap (and zap and zap). My brain goes numb — intentionally — during the treatment, and I listen to whatever plays on the radio that day. A little Barry Manilow, some Whitney Houston (incredible voice, too bad about the drugs). Today it was the Eagles and Phil Collins.  Looks like we’re moving up to hits of the 80s.

Though the treatments are physically far less difficult than undergoing chemotherapy, I am burdened by the daily reminder of this disease that my visits bring. The treatment period is much shorter than that of chemo (6 and a half weeks vs. 24), but I’ll actually make more trips to the radiation center (33 total) than I did to the infusion center. The technicians tell me that some people fall asleep on the table during treatment, and some actually snore.  The most excitement I’ve had was the day a technician accidentally pulled off my gown.  She had been reaching up to adjust the disc of the linac and caught the edge of my gown with her bent elbow.  When she moved away, so did the gown — rather like whisking a tablecloth off a table.  The technicians apologized, of course, and the next day we made a joke of it. Today I suggested we pretend the linac was just a fancy sort of tanning bed.  The technicians guffawed and said, “You’d get one strange-looking tan here.”  True, but I still think the room could be dressed up a bit with palm trees and beach umbrellas painted on the walls.

Dr. W says things are going well.  I’m starting to see redness in the skin of the treatment area, and my left armpit feels a bit swollen and uncomfortable. My body continues to work out the remnants of chemotherapy, a certain sort of heaviness and stiffness in the hips and legs, and I‘m told it can take up to a year before I feel normal, though by then I probably won‘t know what normal was.  On the bright side, my eyebrows and lashes have begun to reappear. And on Friday, the radiation technicians handed out Valentine’s chocolates to us patients.

Heading further down the path of healing methods, beyond the crystals and color I mentioned last week, I came across a publication called the New Spirit Journal, which is published in Seattle. It contains articles and advertisements from different types of healers in the area, everything from the Shamanic Herbal Tradition of the Wise Woman to balancing your doshas with music (the three primary doshas being earth, wind and fire — now you know where that band got its name).  Many of these modalities derive from ancient practices and focus primarily on keeping the body’s energy channels open.  My massage therapist has incorporated a bit of Reiki into the sessions, and I’ve found that it seems to increase the positive effects of the massage, making my body feel lighter and “clearer“ afterward.  Reiki is an energy therapy from Japan that involves the practitioner laying hands on certain areas to help open energy channels and promote healing.  Acupuncturists clear blocked channels with needles.  Practices such as tai chi are intended to keep the body’s energy flowing. You have to think that there’s something valuable in these techniques if they’ve been passed on through the centuries.

But as with things like used cars and appliances, it’s caveat emptor — buyer beware!  Among the classified ads at the back of the paper is one by the Reiki Ranch, located a little south of here, where you can become certified in Reiki and, while you’re at it, learn techniques for ghost-busting and ridding yourself of monsters and spooks. And then there’s the man who bills himself a psychic, clairvoyant and healer, who just also happens to be an interior designer.  Not one to miss an opportunity, he can do readings over the phone too. An ad for a different place points out that if you can’t actually pay for the classes at a place called Peace Communities, you can barter for services while you earn your “peace points.”   Trade a little housecleaning, earn some peace points….

In lieu of photos this week, here are links to a couple humorous sites I found while surfing:

1.  For those of you who, like me, can’t get your brain to stop whirring sometimes, take two cheap words of advice from Bob Newhart : http://www.youtube.com/watch?v=T1g3ENYxg9k
2. And here’s something for those of you who get hungry while studying genetics.  Look for teeth marks on the short ones: http://www.seriouseats.com/2009/10/gummy-worm-chromosomes-art.html

Dive-Bombed by a Hummingbird

I’m a bit late getting this out due to the clutter on my desk and in my brain.  I just realized it’s SEPTEMBER already, and time speeds on. The sun is out.  The mountain is out (though it looks like we’ll get rained on all holiday weekend).  And I’m waiting for the handyman to come back to finish up the jobs he started earlier today.

The Popsicle Report:   Blueberry-lemon!  On a stick. I wish I knew what brand it was because I’d sure buy these.  Despite what it sounds like, it was quite tasty.

Chemo round #8 down — a third of the way through the whole chemotherapy treatment. Four more of the Adriamycin infusions and then I switch to the Taxol for 12 weeks.  I saw my regular doc, who thinks things are going along OK.  The white cell count is up again (4.5 from last week’s 4.0), so he says I can back off the Neupogen shot to once a week.  The schedule of shots is not an exact science, but becomes whatever suits the individual patient. Fortunately I didn’t have any bone pain after the shots this past week, and the mouth sores are gone.  The red cell count is low, but not yet in need of bolstering.  It does indicate anemia, though, which leads to fatigue.  I have sporadic bouts of fatigue, but nothing incapacitating — more a sleepiness than a body-tiredness. I’m also a bit irritable, but I think that’s because it’s time for my kids to get back to school (next week!).  They’ve become rather like ferrets — all over everything, full of noise and wrangling.

I also saw the naturopath last week. No changes to his plan, except he’d like me to gain a couple pounds of “reserve” weight. (“Let’s see if we can get you into triple digits!”)  He recommended eating protein, good carbohydrates (I could easily gain pounds with just a couple doughnuts!), and “good” fats — for example, nuts, avocados, and olive oil.  Jokingly, I asked if I should just chug the oil out of the bottle.  He said (with a straight face), “Well you could, but you could also do shots.”

Imagine THAT experience.

Apparently he did shots of the stuff once when he had to gain weight for a sports team. I suppose it’s no worse than Sylvester Stallone chugging raw eggs in the first Rocky movie.

Yesterday, I treated myself to an oncology massage. With all of the events over the summer, I’ve been feeling rather like the Scarecrow in The Wizard of Oz after the flying monkeys get to him.  (“They tore out my chest and they threw it over there…”)  Mammogram, MRI, ultrasound, two biopsies, CT, bone scan, PET scan, two surgeries, physical therapy, chemotherapy (and radiation to come).  I figured I deserved it.  The oncology massage is similar to a regular massage, but lighter, and the therapist incorporated some reflexology (massage of the feet) and Reiki, a sort of laying-on of hands to open energy channels in the body (an Eastern practice).  The downside was that she had to wear gloves.  Apparently there can be some skin-to-skin transfer of the Cytoxan, the other cancer drug that I take orally every day.

A couple interesting “side-effects” of the chemo that I haven’t seen mentioned in all the information I’ve been given:

One day last week, I was standing out on the back deck talking with someone on the phone when I heard a loud buzzing and looked up to see a hummingbird hovering only a few inches from my face.  My startled movement scared it off, but later that same day, it happened again.  Loud buzzing.  Fat little bird body within inches of my face. Bold little bugger, I thought.

And then I realized — the scarf I was wearing had a large red flower on it.  He had me figured for food.

The other “side effect” occurred at the gas station.  I was waiting in line to pull up to a pump and noticed the car to my right, which was also waiting and had just stalled.  The woman driving started cranking the ignition, trying to restart the car, and while I watched, I noticed the telltale headscarf tucked neatly and completely down over her ears and the nape of  her neck.  I put down the passenger-side window and asked her if she needed help. (No way should someone have to deal with cancer, chemo AND a stalled car.  That’s just not fair.)  She thanked me but said no, that the car would start in a few minutes, and sure enough, it did.

We both rolled up to our respective pumps, and while we were waiting for the tanks to fill, she came over to me and asked if she could assume that my headscarf meant the same thing as hers — going through chemo.  I told her yes, I was going once a week and she said, “Oh, yours must be breast cancer.”  I puzzled over how she put those pieces together (maybe breast cancer is the only once-a-week regimen?), and she said she’d just finished chemo.  “Mine’s ovarian,” she said. “I’ll trade ya!”

Fortunately, I long ago developed the ability to disconnect what my brain thinks from what my mouth says at critical moments like these.  My brain said, “No way!” while my mouth changed the subject. You see, there’s a continuum of cancer. On one end are the noninvasive ones that grow slowly, can be removed easily and never return.  On the other end are ones that give little notice, grow swiftly, can’t be detected early, or are relentless, like the brain tumor that just claimed Ted Kennedy’s life.  Breast cancer has the same   stages as other types of cancer (I to IV), and even a Stage O.  Sometimes it is detected early, sometimes not, sometimes it’s aggressive, sometimes not. Ovarian cancer, on the other hand, can be fairly aggressive and is often not detected until it’s advanced, and so the fact that this woman could joke in such a way with me at the gas pump was a remarkable testament of her spirit.

When I changed the subject, we talked about wigs, insurance, and skirted across a number of other health-related topics.  She said that she knew of a number of people (“like you,” she said) who had followed all of the rules of staying in good health and ended up with cancer anyway.  As I drove away, I was both happy and horrified.  Happy that I could bond with someone just on the basis of a headscarf.  Horrified that I could bond with someone over the reason for the scarves. They mark our inclusion in a group neither of us wants to belong to.

An odd and unpredictable journey.  That’s what this is.