The Latest Developments

A couple days ago, I went in for the next in my series of 3-month check-ups.  A few odd numbers still show up for the blood cells, but everything else looks OK.  It’s been 15 months since the end of chemotherapy, just over a year since my last dose of radiation.  So I “graduate” to check-ups every 6 months now, and return to the annual schedule for mammograms/MRI. (Frankly, I’d prefer to skip the mammogram, but the doc likes to see one.)

So why the switch to a new schedule? After all, cancer can come back any time it pleases.

The logic goes something like this:  If it’s a supremely aggressive breast cancer, it will very likely come back during the first year after treatment.  After that first year, the chance of recurrence drops a bit and, in the case of triple negative disease, the chance of recurrence drops precipitously after the third year.  But as is typical of the confusion in the media when it comes to health information, I also read somewhere that the peak of recurrence for triple negative tumors is in the second and third years, so I don’t know what to believe.  This is one of those moments when I just turn myself over to the recommendations of the folks who know more than I do.  If the doc says don’t come back for 6 months, I’m not going to argue.

Listed below are bits of news I’ve collected about recent developments related to cancer and cancer patients in general:

  • Lest we think too much of our American advances in medicine, to the exclusion of developments in other places, here is an article describing the use of something called the Mobetron, a type of linear accelerator, in Japan.  This unit is used for intraoperative electron-beam radiation therapy (radiation delivered *during* surgery) and has been employed for patients with pancreatic cancer since 2006 and breast cancer since 2007. Its use in Japan was inspired by results from studies in Italy. This approach makes it possible to apply a single dose of radiation directly to the cancer site during surgery, allowing the patient to avoid the 6 weeks of standard postoperative treatment. Besides the obvious advantage of shortening treatment, such an approach means the surgeon can directly see the field to be radiated and there is less damage to surrounding tissues. This technique has crossed the ocean but is not widely available yet in the U.S.  If you’re interested, you can see the unit in operation (and the shameless plug for the hospital it’s at) in this video.
  • A couple of other recent studies serve well to dispel some of what are in fact myths of cancer treatment.  The first group of researchers found that depression is no more prevalent in cancer patients than in the general population of primary care patients.  The second set of investigators discovered that it may not be necessary to remove a large number of lymph nodes to assess the spread of breast cancer  – a procedure called lymphectomy that can sometimes lead to problems with lymphedema, a painful swelling of the arm.  They found that women who have only a few nodes removed for analysis have 5-year survival rates almost identical to those who have more nodes removed. I rather wish this study had come out a little sooner, but it might not have changed the picture for me after all. Extensive removal of nodes may still be necessary for those who have Stage 3 cancer. The piece of this puzzle yet to be explained is how a doctor then determines the stage of disease, since the number of lymph nodes involved is often what distinguishes, say, Stage 2 from Stage 3.  I’m sure there’s more news to come on this front.
  • A friend sent me a notice about ways to prevent thyroid cancer, the rates of which have been steadily increasing over the years, particularly in women. Some researchers suspect that this increase could be a consequence of the increased use of dental x-rays and mammograms.  Few of us know that the apron the dentist puts on you for x-rays has a flap that goes up around your neck to protect the thyroid.  There is also something called a “thyroid guard” for use during mammograms, but most technicians don’t use them unless you ask.  You can find more information about these methods of protection at one of my favorite websites, the one that investigates Internet myths and legends – Snopes.com.

Her Story Is Not My Story

Last Friday, my family went out to eat, to a place we go to frequently. Our waitress was a woman I’ve mentioned here before, a woman whose mother underwent chemotherapy for esophageal cancer at the same time I was being treated.  The woman who defined sex for her 80-year-old mother as “doing the horizontal mambo.” The one who had decorated the radiation mask and hung it over her mother’s bed.

I asked how her mother was doing. When I’d done so back in the spring, she replied sprightly, “She’s doing well.”  This night, though, she hesitated ever so slightly before answering, “Thank you for asking.  She’s taken a turn for the worse.”

It seems her mother developed an infection at the site of radiation and no treatment has been able to clear it up.  The doctors have also diagnosed lung cancer, but can’t do surgery or prescribe chemotherapy because of the infection. The woman’s mother has been in a nursing home, but she will be bringing her home soon for her final days.

The new woman in the yoga class talks of her recently diagnosed carcinoid cancer.  She’s a friend of the woman who had the double mastectomy and is fighting lymphedema in both arms. There’s also the friend who tells me of her friend who’s been diagnosed with breast cancer at age 26, and a woman at a workshop I attended who has both breast and ovarian cancer.  She refers to herself as “the weepy one.”

People seem to need to tell me about other people they know who have been diagnosed with cancer.
And I don’t mind.
I really don’t.
It reminds me that I am not alone.

Many of these stories confirm what I believe to be true.  Cancer is not a disease of old age. The more I read, the more I believe it arises in many of us because of environmental influences.

Each time I hear of another, though, the fear rises and I have to choke it back.

After the wave of panic passes, I tell myself:  Her story is not my story.
Her fate is not mine.

I am too young to have this illness.  But the 26-year-old is REALLY too young.
That woman may have lymphedema, but I don’t (fingers crossed).
I am sorry for them.  No one deserves this diagnosis.

But her story is not my story.

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…..

Champagne and a Torch to Pass

So on my way home from my LAST DAY of radiation treatment on Monday (yippee!), I stopped at the liquor store, figuring to buy a bottle of champagne. Appropriate, I think, considering the circumstances.  I was the only customer there (a good thing considering it was before noon), and there was just one clerk working the cash register. As she rang up the bottle, she asked to see my ID since I was using a credit card.  Unlike other cashiers at other places, she actually looked at the photo on my license and then looked long and hard at me, comparing the face before her with the laminated version on the card. That version has light-colored hair hanging down below her chin.  “Oh, I like the short hair much better,” she said, and went on to talk about how her mother got her hair cut short but she likes her own long hair even though she always ends up putting it up a few hours into the day.  As I listened to her talk, I realized it — I did not have to explain to her why my hair is short.  She assumed it was simply my choice of style, not the repercussion of a long, tiring excursion on the cancer path. And that’s exactly what I let her think. What a relief.

So take a good look at the photos.  This is how I looked on my last day of radiation treatment.

And accompanying me is one of the friends who helped me through.

The last 5 sessions of chemotherapy, the “boost,” started last Tuesday.  The room used for the boost is opposite the one I’d been going to, but it looks very similar. Linac dominating the middle of the room, those same pock-marked acoustic tiles on the ceiling. Honestly, they need inflatable palm trees in these rooms, walls painted in a jungle theme, something, ANYthing to dispel that cold clinical feel (and I have told them so on the feedback sheet they gave me).

The machine also looks similar, but attached to the disk hovering overhead is a short arm that holds a metal cage.  The bottom of this cage is a thick piece of metal with a hole cut in the shape of  the oval Dr. W drew on me last week. The table I lie on has no special backrest — perhaps they’ve already recycled mine — just a sheet to lie on and a pillow to lean on.  For the treatment, the cage gets moved close up, and then the technicians lay a warm orange gel pack across my chest and tape it (and me) to the table with long stretches of cloth tape.  The pack acts as a layer of skin, allowing the electrons to penetrate at the correct depth.  Once the session is underway, the machine emits a subtle fizzing noise.  The whole session takes about 5 minutes.

The doc checked my skin last week and says things look good.  A couple changes — antibiotic ointment for a week under the arm where the skin is chafed, Eucerin cream on the rest of the field, “call if you have any questions.”   The itching is diminishing and, except for the oval area of the boost, the redness is lessening too.  Any skin effects to come will appear within the next week.  After that, it’s the same scenario everyone is advised to follow — stay out of the sun, wear suncreen. Oh, and here’s a souvenir mug filled with candy to take home with you.

It seems too easy.  Go back to life as you used to live it (except for that constant vigilance part).
But surely this can’t be all?  All of the cancer gone, yes, but how do I go back to living as I was before?  The earth has spun, vistas of fear and determination opening up inside me, how can it be as it was before?  I’m not who I was then. And the whole experience taught me that I don’t necessarily understand who I am now or what it is I’ve come through.  So, although the trips to the doctor have ceased, my journey has not.  Now I have to figure out how to be, all over again.  That could be almost as frightening as the illness was.

Fortunately, the oncology center is working on ways to ease this transition back to the future of the “new normal.”  In addition to the naturopath, the massage therapist, and the other services they offer, they are instituting a program for those ending treatment.  I met with the clinical psychologist who is marshalling the effort and came home with a stack of information almost as big as the one I had before starting chemotherapy.  Lots of good resources for dealing with this time that is, as the radiation oncologist described it, almost as difficult as receiving the initial diagnosis. I have been so very blessed to have these resources and so many good people looking out for me.

And now, in turn, I become one of those looking out for others.  Last week, the university where I have been teaching had its annual opportunity for women to read from their own writings in honor of Women’s History month.  I chose to read selections from these updates.  Afterwards, a woman from the back of the room stepped forward and extended her hand, explaining that she was about to embark on the same path — triple negative, no explanation for its occurrence — and had just had her hair cut short in anticipation of its coming out. This is not a torch I would choose to pass.

And maybe, if more facts about cancer and its treatment were made known, there would be fewer torches passed.  I came across an article in the Sun Magazine , an interview with Samuel Epstein, M.D.,  a British physician now living in the U.S.  The topic of the interview was cancer, and how the public is not fully informed of the issues surrounding it, the reasons it develops, and even how the American Cancer Society is not fully invested in finding causes and prevention. Epstein says there is sufficient evidence to show some definite causes of cancer: prolonged use of birth control pills and hormone replacement therapy, high-fat animal and dairy products, hormone-contaminated meat, petrochemicals in the workplace, prolonged use of black and dark-brown hair dyes, silicone breast implants, heavy smoking or drinking beginning in adolescence, inactivity and obesity.   Some of these we’ve heard a lot about, some not so much, and there’s plenty of arguments about what really causes cancer.  But I was struck by the forcefulness of his argument, and couldn’t help but notice the irony of the publication date — March 2000.  In the interview he refers to his prevention program, from his 1998 book on breast cancer, in which he recommends taking aspirin as a preventive.  And here I thought the recent article in the New York Times about aspirin as a preventive was up-to-date news.  If you’re interested in reading what Dr. Epstein has to say, take a look here:  http://www.thesunmagazine.org/archives/842

The cancer may be gone, but my journey continues….

Radiation is Not the Picnic They Promised

March already and I can’t believe it — that time has sped by and STILL I‘m undergoing treatment. Sigh.

Madame Spring has taken center stage out here. The cherry trees are beginning to bloom. The hummingbirds have disappeared, but, o lordy, the frogs are a-singin’ — so loud, I can hear them in the house with the doors and windows closed.   Such little critters.  Such BIG voices.

No Popsicle report this week, but here’s the Zap Count:  28 down, FIVE — only FIVE — to go.

And boy am I glad. At this point, the whole left side of my chest is red and itchy. The underarm is seriously irritated and that irritation now encompasses the back of my left shoulder, which also displays little red dots that indicate (as the nurse described it) inflamed hair follicles.  I’m on my second tube of hydrocortisone cream and aloe vera as well. The radiation visits have gone like clockwork, everything is progressing well, but this isn’t like any picnic I’ve ever been to.  And there aren’t any pieces of cake either.  I’ve developed a sensitivity to any whining motor noise reminiscent of the sound of the linac, which unfortunately includes the sound of the automatic hatch closing on the back of my car.  To that, add the still achy hips and legs (shoulders now too), and the continuing flares of induced menopause, without my usual exercise to mitigate things (the skin and other troubles prohibiting much concentrated activity), and I am (in case you hadn’t noticed) a mite irritated.

Last week, the technicians and Dr. W began to prepare me for the change in the treatment plan.  Today, blessedly, was the last of my baking on the large scale. Tomorrow starts the “boost.” For this, I’ll switch to a different room, a different machine, turning left instead of right after the hallway from the fish room. The new machine will douse the scar left from surgery with electrons rather than the photons I’ve been targeted with till now.  To lay the plan for the boost, Dr. W drew more magic with her black marker at last week’s visit.  I now have two concentric shapes outlining the scar on the top of my left breast.  The outer one is a large oval; the inner shape reminds me of Nebraska.  So now you can picture it — a lobster-red background outlined by tattoo dots on which lie two heavy black outlines, a nipple, and a scar.  A couple of bolts for the neck and Frankenstein lives again!

Yep.  Irritated.  That’s what I am.

After Dr. W finished drawing the geometric shapes on me, she told me to try not to disturb them with either washing or the ointments I’m applying to the skin.  As she stumbled in her explanation of what to do, I completed her point.  “So, you want me to color inside the lines, is that it?”  She nodded and smiled.

The good thing is the hair.  Despite what all my photographic play in earlier posts might indicate, the loss of hair was never about identity.  On a woman, baldness — and the scarves and hats used to disguise it — becomes a beacon flashing out the message: “Here is a victim of the treatment for cancer.  Have pity!”
Men can be bald without comment.  Women can’t.  “How brave!” the audience said when Melissa Etheridge performed bald at the Grammy awards show a few years back.  But Michael Stipe of R.E.M., and Bruce Willis, well that’s just their style.

The only problem is that the hair issue isn’t consistent.  Many people who undergo chemotherapy don’t lose their hair, and yet deserve the same concern as those who do.  Existence can indeed be deceiving.  Last week, I asked Dr. W if we should assume that my cancer is gone.  She responded instantly, automatically, “Of course! We don’t see it anywhere.”  Maybe not, but we all know that things exist even if you can’t see them.  Though modern medicine doesn’t show any evidence, any of us who’ve gone through serious medical treatment know that, no matter how modern, there’s much medicine can’t do.  Still, I’ve done all I can to wipe out the disease, and so it’s now a matter of my mental choice. I can go down the path of worry and anxiety, wondering if the cancer will return. (Many people report feeling betrayed by their body when they get their diagnosis.  I don’t think my body betrayed me, but instead was overwhelmed by the errant growth of its own cells.)  Or I can choose the more uplifting path reflected in the tone of Dr. W’s response. And so, I’m putting my heart in the trail of her words.  Can I assume it’s really gone? “Absolutely!” she says.

And just to help keep it away, I decided to go down that spiritual path to the crystal shop in town, the dark, dusty one next to the mailbox shop on State Street.  I was curious to see if the information I’d read in the book could play out in reality.  The shop looks to have been around a long time.  Dream catchers hanging in the window.  Long glass cases packed full of trays with different types and colors of rocks. The man behind the counter, weathered by many years, wore a blue flannel shirt, his grey ponytail cascading down the back. He was quietly reading when I came in, but didn’t speak till I greeted him.  The first day I simply asked questions, trying to ferret out his attitude and decide if these rocks were for real.  He seemed authoritative, answering what questions he could and referring to his collection of reference books when he wasn’t sure of something. He wasn’t weird or pushy, and so the next day I brought back my book on crystals and showed it to him, asking which ones would work for me, to dispel negativity and to help me heal from breast cancer.  He reviewed my book, consulted his own, and then finally called his wife who, he said, knew more than he did.  She told me that any of the black rocks would do for dispelling negativity — hematite, laboradite, onyx — and THE crystal for women,  even those who don’t have breast cancer, is rose quartz — for balance, for healing.   Wouldn’t you know, it’s the pink rock.

If you’re interested in tracking down some rocks of your own, take a look here: http://crystal-cure.com/gemstone-meanings.html

Who knows.  One might be just right for you.