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.

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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…..

Between the Drugs and the X-rays

What a difference a week makes.  Hard to believe that, less than a week ago, a decorated Christmas tree stood in our house and paper snowflakes dangled from light fixtures.  All that is gone now, with the weight of the old year (and aren’t we glad?). With weekend temperatures in the 50s here, it seems like Spring has thrown aside the old year in her rush for center stage. I even heard a frog singing last night.

My sympathy to those of you suffering freezing temperatures and snow, but it’s not often we get to gloat about being warmer than Florida.

The hummingbirds continue to come and go (they may even talk of Michelangelo), and I’m getting a brief respite before the beginning of radiation next week. The effects of chemotherapy are slowly dissipating and my energy seems to be increasing.  No cell counts, no popsicle report, and still not much hair. (A few more inches of this gray fluff that’s coming in and my daughter says she’ll loan me her hair gel to spike it.) But I have found that green tea is the next best thing to dexamethasone.

Last week I checked in with the naturopath, who’s changed the plan now that chemotherapy is over and radiation is about to begin.  I get to quit the glutamine and the probiotic, and need to stop the CoQ10 during radiation, since it’s an antioxidant that might interfere with treatment.  That leaves only the fish oil and vitamins B and D.  He was happy to see that I’ve porked up to 103 pounds.  Must have been those gingerbread cookies my sister makes for Christmas.  And those cornflake wreaths…..

Though time is passing at its usual rate (more and more quickly the older I get), I’m surprised by how quickly the mind refocuses once an unpleasant (but necessary) series of events ends. For six months I trekked to the infusion center every week to spend several hours in a chair.  Twenty-four times in and out of the parking lot, in and out of the Barcalounger, jabbed by needles and given poison. The last infusion was less than 2 weeks ago, but it seems months already.  I realized the drastic shift in focus yesterday when I went in for a mammogram.  Walking into the radiology office jerked me back into hard reality.  It was early June when my visits there began the treadmill I’m on.

The mammogram served two purposes — the 6-month follow-up after surgery, and to document the new baseline image that the radiation oncologist needs to lay her plan.  Once again, I stood by the technician as she pulled up the images on her screen — beautiful rounded shapes of wispy white on a dark background.  Hard to imagine there could be anything lethal hiding in there. She compared them with the images from last summer, with the dark spot and cluster of calcifications that signaled trouble.

I spoke with the radiologist who reviewed the images.  He assures me everything looks OK now.  But you know I can’t trust that conclusion.  We talked about the recent controversy regarding mammograms, and he readily admitted that mammograms are a poor tool, but as we all know, “it’s the best we’ve got.”  And there’s nothing else in the works to replace it.  Just to be safe, he recommends following through on the order written after surgery for a follow-up MRI, so I’m waiting to hear back from the radiation oncologist about getting that scheduled.

I did finally stumble across an article that takes down many of the myths about breast cancer, one of which is the role of mammograms. It showed up in good ol’ middle-of-the-road Prevention magazine: http://www.prevention.com/breastcancermyths/index.shtml

If you look past the provocative lead photo, there’s actually solid information here. The article ends with a link to the Army of Women, a group established by Dr. Susan Love, whom I’ve mentioned before. The link takes you to the Army’s site, where you can sign up to be notified of clinical trials to participate in. You don’t have to have cancer to sign up.  They’re doing research on women without the disease to try to find what causes breast cancer. One of the difficulties of doing research for any disease is getting people to enroll in trials.

Speaking of other diseases, while at the grocery store checkout over the weekend, I noticed a plastic donation box on the counter.  Small, undistinguished, a clear box with a blue label indicating that it was for lung cancer. How very different it was from all the signs, labels, and products we see that are linked to breast cancer, with their bright pink labels and bold lettering. Breast cancer gets a whole month of attention in October.

But according to the Mayo Clinic, “Lung cancer is the leading cause of cancer deaths in the United States, among both men and women. Lung cancer claims more lives each year than colon, prostate, ovarian, lymph and breast cancers combined.” The CDC gives these numbers: “In 2005, 90,139 men and 69,078 women in the United States died of lung cancer.”  Do the math and you arrive at this total: 159,217 people dying of lung cancer in one year. Breast cancer claims about 40,000 lives a year. With those numbers, lung cancer deserves more than a lonely plastic box at a grocery checkout.

Here are a few more tricks with identity:

The closest I’ll ever get to being a geisha.

A friend in Japan brought these kimonos for my daughter and me in the summer of 2008.  Technically, these are yukata, the lightweight kimonos intended for summer wear.
My own version of 1920s motoring garb, taken before my hair came out.

Frog is my co-pilot.

The pink warrior. All I need is a little war paint.

If you’ve done a race or walk for the cure, you might recognize that scarf as the current signature of the Susan Komen Foundation (in partnership with the Ford Motor Company).  My sister and nieces did such a race on my behalf last summer and passsed on the scarf to me.
The closest I’ll ever get to being Jessica Simpson.

The hat, loaned to me by my mother, bears Jessica’s designer label.  I’m waiting for the paparazzi to arrive.

Many thanks to my photographers, my children, for indulging me in my experiments in identity.

Chemical Cocktails Revisited

The grayness has set in and the raindrops are falling.  I knew the glorious weather of last week wouldn’t hold, but at least a few of the hummingbirds are still coming by. They do seem to come more on gray days.

I switched to the new drug routine yesterday and am waiting for the new adventures to begin. Nothing like the whiff of an illness or a change in drug routines to make you monitor every body process you’ve got going on.

The Popsicle Report:  Unfortunately, a Popsicle is no longer part of the routine.

The new drug, Taxol, isn’t as likely to induce mouth sores, so no need for the sweet treat to cool the mouth during infusion. I suppose I could put on a pathetic face and ask for one anyway (surely the nurses wouldn’t deny me?).  Or I could just live vicariously through my children.  My daughter got a Popsicle last week after her flu shot (orange).  I could probably drag my son in for a shot and a Popsicle, but he’s less willing to cooperate when it comes to needles, at least needles that are poked into him. When my husband jokingly offered him the chance to give me the Neupogen shot last week, his eyes got really big with interest.  “Can I give you the shot, Mom?”

No. No. And no.

Instead of the Popsicle, I get to plunge my hands in a bucket of ice during the infusion.  The main side effects of Taxol are neuropathy (burning, tingling, etc.) in the fingers and toes, and possibly bone/joint/muscle pain.  The principle behind the bucket of ice is the same as with the Popsicle — cool the area likely to be affected and you might diminish the side effects.

Isn’t science amazing.

The infusion procedure is similar to the Adriamycin — check in, check the blood count, and proceed as long as the numbers look OK.  My white and red cells are holding steady, though a little below normal.  The Taxol isn’t supposed to be as hard on the bone marrow as the other drugs, so I may be able to stop the injections of Neupogen, and the nurses say we don’t worry about the red cells unless I get to a point that walking across a room leaves me winded.

Next comes the happy drug, the dexamethasone, and then my chemical cocktail — a mixture of 25 ml of Benadryl and 50 ml of Zantac.  These are designed to forestall any allergic reaction to the Taxol.  Even though the Zantac is primarily used for stomach problems, it also acts as an antihistamine.  And Benadryl just knocks you out. (Stories abound of parents using the stuff to manage their children on long car trips.)  Then the nurse sat with me for 10-15 minutes to see if there would be a reaction. Since it didn’t happen on the first round, it’s not likely to happen in later rounds.

I can attest to the soporific effects of Benadryl. I dozed during most of the infusion (about an hour, longer than the previous ones), and needed a nap when I got home. The energy of the happy drug isn’t enough to counteract the sleepiness, but the dexamethasone does last longer.  It makes for a bit of a roller coaster though:  Up, crash, up.

I visited again with the naturopath last week.  He’s the one who suggested the bucket of ice, and he’s added a few things to compensate for the Taxol.  He’s put me on a Vitamin D supplement (5,000 IU daily) since I’m low.  Given the climate here, that’s not surprising and there’s ongoing research looking into the connections between Vit. D levels and breast cancer and multiple sclerosis, both of which occur at higher rates in the Pacific NW.

He’s recommended substituting melatonin for the Ativan I’ve been taking at night, but I’ll have to taper the Ativan, not just go cold turkey.  I continue with the fish oil, CoQ10, and probiotic supplement. He also added L-glutamine, a gritty sort of powder to be taken twice a day, mixed in something palatable.  Glutamine supports the immune system, can help prevent neuropathy, and supposedly helps build muscle strength.  Some body builders incorporate it into their routine.  Next time you see me, I might just look like Arnold Schwarzenegger, before he became plastic.

And then there’s a jar of something called Amla Plex, an Ayurvedic concoction of Indian gooseberry and a variety of herbs that support the immune system.  Vile-looking stuff it is.  Mushy. Black.  To be spread on toast or (gulp!) eaten by the spoonful.  It doesn’t smell too bad, though, so maybe its appearance is deceiving.  I haven’t tried it yet.

And he also recommended beets.  My liver enzymes were a bit whacked out a few weeks ago.  He tells me beets are great for cleansing the liver.  Got a dirty liver?  Eat beets.

We also had an interesting discussion about that list of carcinogens I found last week.  I asked him why some elements showed up on the list but don’t appear as risk factors for a disease.  He speculated that there are powerful business/financial forces that interfere (gee, no surprise there), and used BPA as an example.  That’s the plastic softener that’s currently under fire in the U.S. and has been recently banned in Canada.  It’s used in everything from baby bottles to, as he described it, the linings of the bags that my chemotherapy drugs come in.  So I may actually be getting a (bonus?!) cancer-causing agent with my infusions.

Yep, isn’t science amazing.

Here’s hoping the cancer-inducing agents will cancel each other out…