Posts tagged with 'breast cancer recovery'

Soul Music – Can you dig it?

  • Posted on April 26, 2014 at 3:41 pm

Musical notes

Have you ever wondered why music soothes us to the core? Why it calms the soul as much as being massaged, soaking in a hot tub, or drinking a cup of chamomile tea before bedtime?

Research has confirmed what diverse cultures–and our own brains–have known for millennia. The music-as-medicine effect is captured aptly in a recent Berkeley Wellness article. The findings clearly explain why I, as a stage IV cancer patient, enjoy playing ukulele so much. It’s an easy instrument to learn, if not master, and the peace it brings me is unmatched. I’ve tried painting, reading, organizing, light gardening, comfort foods, and shopping as ways to cope with my ailment, to whisk my mind to other places. While each of these activities serves a purpose, nothing (other than anti-anxiety meds and good friendships) can come close.

Just picking up the ukulele and playing a few songs in the privacy of my own home cheers me up. This emotional lift need not come from a performance at a retirement home, although such an opportunity certainly benefits both me and the residents. It need not even come from our group rehearsals at a friend’s home where we practice tried-and-true songs and tackle new ones. It’s just the enjoyment that comes from playing and singing in any environment.

I thought perhaps my desire for music stems back to when I listened to the radio while canning cherries with my mom, or while sewing clothing as a teenager. And maybe listening to background music did make an impression then. But now I see that the love of music is universal, built into our DNA as a stress buster that doesn’t require a prescription. I suppose it’s considered alternative or integrative medicine, but I choose to see it not as medicinal, but as natural as breathing.

Music certainly lifts me up when I’m feeling blue. Some days are better for me than others in terms of pain and mental state. When I’m down, nothing can soothe me more than listening to my favorite singer-songwriter belt out an album full of familiar tunes: singers like James Taylor and Mark Schultz. It’s been proven that music helps with depression and grief, a discovery I made long before studies came out to verify these connections.

Music note heart

As the above article notes, the sounds of silence may also resonate. When I’m in the car on my way to and from my clinical trial infusions, with much time on my hands, I sometimes bask in the warmth of road noise alone. Other times, I’m very thankful my son convinced me to have a USB port installed on my dashboard so I can benefit from all the songs synced to my i-Pod. Singing along to tunes that, in random order and genre, hit my ears from the speakers, I get a high like no other.

Songs can be annoying if we are put on hold on the phone and can’t mute those we dislike. The same with restaurants. I found silence to be preferred to the strains of “Yesterday” and “Eleanor Rigby” that met my ears when I had radiation back in 1996. A baby boomer, I was well aware of the gloomy lyrics to these songs, even though they were broadcast in elevator music format. Choosing your own music for surgery or any other procedure is much preferred.

Every routine task I do, from scanning a photo album into my computer to organizing and cleaning my house, is accompanied by Pandora radio or an iTunes playlist. The chore–or fitness stretch–goes faster and is far more pleasant when my faves are in the airwaves. I think that’s why Pandora and other online radio stations have fared so well. Who doesn’t like creating his or her own music station and singing along to the hits? 

While Mozart and other classical composers may offer the least stressful of the music genres, according to the Berkeley Wellness article, this fact shouldn’t limit our choices. I prefer an eclectic selection ranging from classical to classical rock that wakes up my brain and offers me unique solace. But if I have guests, I don’t turn on the speakers unless I know what I broadcast will be enjoyed by all. Music can offend as much in genre as in volume. It’s all a matter of balance and sensitivity.

Having enjoyed my uke so much, I decided to invest in a musical keyboard. Inspiration came from a wonderful woman with whom I stayed recently who plays piano like a virtuoso. I could have listened to her play and sung along with her all evening, if I had the strength of a woman in good health. She encouraged me to get a keyboard and play for myself. I never had piano lessons, but I can read music, having learned in elementary school by playing a clarinet. So now all that’s impeding me from playing is assembly on a stand. 

May we all enhance our lives with the joy and serenity that come from delighting ourselves with ear candy.

Do you like to play or listen to music? What genre(s) rock your boat?

Where Have All Compassions Gone? Long time passing

  • Posted on April 12, 2014 at 12:55 pm

Zulu children South Africa

Have you known someone whose life was robbed by breast cancer? Approximately 40,000 Americans die each year of the disease (American Cancer Society), and worldwide the figures rise to a whopping 450,000 (World Cancer Research Fund Int’l).  After a special friend in my support group died of this disease, we attended her funeral on September 11, 2001, of all days. Another friend succumbed to the disease a year ago, her packed memorial service leaving me to wonder why drugs still worked to keep me alive.

As a breast cancer metavivor I’m convinced that research, rather than a cure, should be the focus of our efforts in this struggle. I, for one, would be happy with drugs that keep our disease in a chronic state, like diabetes. Research might lead to a cure, but right now I would settle for drugs that will treat our disease effectively, keeping the cancer at bay with the least amount of pain and side effects.

Is that too much to ask?

I participate in a discussion board hosted by Inspire, a go-to support site for various ailments. The one to which I subscribe is a web portal solely dedicated to advanced/metastatic breast cancer patients, their families, friends and health care providers. It’s a beautiful community where we support each other compassionately and in a way that others, including those with earlier-stage diagnoses, cannot. Not only do we share side effects of drugs and how to manage pain and handle anxiety and financial and insurance concerns, we also address efforts at advocacy.

A passionate advocate on the board, Phil McCartin, speaks for his wife Lorraine and all the rest of us with advanced breast cancer. He believes the US FDA must allow more drugs to be approved for metastatic patients. Compassion is the name of the game. Clinical trials can work well, as his wife and I both have personally experienced, but once a patient is off that trial, what happens? Insurance may no longer cover the cost of these life-saving, but expensive drugs because the FDA has not approved them yet for the specific indication being treated.

What are they waiting for?

Trials have gone on for years proving that T-DM1/Kadcyla, one of the drugs I am taking, is efficacious and safe for metastatic breast cancer patients who have not taken any other drugs for their advanced disease. A targeted biologic therapy, it proves far superior to chemo in its side effects. Yet it is still only approved for those metastatic patients who failed on another medication. So if we can no longer participate in clinical trials (for various reasons beyond our control such as platelet drop), we may have to wait for palliative or hospice care to kick in because we can’t afford these drugs. Sometimes the pharmaceutical manufacturers will pay for part of their drug based on patient income and perhaps other factors, but there is no guarantee.

I am not about to leave my trial voluntarily to get treated close to home, only to find that insurance will not pay for the combination of drugs that has saved my life for over a year with minimal side effects. It’s too risky. So I continue to drive hundreds of miles every three weeks to get Kadcyla and Perjeta for free.

An article posted by Phil and a video by Lorraine drive home the point. These are real people, not actors or simulations. Lorraine’s wonderful news that she can now be treated locally is featured in a post by a fellow breast cancer blogger. Now we need to find a way for me and so many others to be treated closer to home at an affordable cost. And we need FDA approval of cutting-edge combination drugs to improve our quantity and quality of life, pronto!

We need not let politics, threats of litigation, budget constraints, and bogus safety concerns get in the way of the ultimately compassionate goal of saving lives. It would help if a big celebrity were diagnosed with stage IV breast cancer and became a spokesperson for this special disease. Often that’s the only way specific diseases get attention in our Hollywood-obsessed culture.

Kudos to Phil and Lorraine for their courage and their advocacy. Unfortunately, in our pink-awareness society, breast cancer almost always means early-stage, curable breast cancer. To truly help the disadvantaged, those whose cancer isn’t curable but who seek good quality of life in the years they have left, put the money where it counts, not in pink awareness campaigns. Visit and metastaticbreastcancernetwork.

Let’s end the scourge and allow more of our friends and family members to live meaningful lives and build memories. Where have all compassions gone? I’m hoping that, unlike the song, we WILL learn.



Joy to the World

  • Posted on January 5, 2014 at 4:19 pm


It’s no mystery to anyone who knows me that I tend to be a joyful person, to look at the cup as half full. What might be surprising is my going to the hairdresser about a month ago and emerging as an elfish tomboy with a gamine cut. This chick no longer hides behind her hair, now that cancer has cruelly stripped me of the girly-girl image.

The new ‘do shouts boldness and confidence ala Jamie Lee Curtis. I’m no Jamie Lee Curtis, mind you. But I think it’s time to lose the charade of trying to cut a decade off my age when no one is fooled. Plus, who wants to pour Clairol over her scalp when she’s had cancer three times and is living with the Stage IV variety? Haven’t I been exposed to enough chemicals?

I admire Jamie very much, not because she was a shock queen, but because of her spunk and bravery. I haven’t lost friends because of my new look, and that shows the quality of my friendships. In college I might have lost a few if I had had a radical cut, superficial as they were. But now my friends are made of solid-rock material, with a soft center that speaks volumes.

Life continues to be good to me, however you define good. My definition varies dramatically from that of the average American. Good means encountering little chronic pain on a given day, being able to change the bedclothes without much effort and using my Swiffer® mop to good advantage around the house. Dust bunnies don’t make cuddly pets, and spindly spiders only darken my mood. A good life to me also means parties and friends, church and family.

I’d love to make long-term travel arrangements, requiring a different kind of boldness than wearing my hair ultra-short. But these days any plans tend to be shorter-range. Right now I hope to cavort in Hawaii in May, a month not so far away that I would feel uncomfortable making reservations. Thank God for good cancellation policies and travel insurance for the just-in-case scenarios.

Don’t misunderstand me. The targeted therapies I receive in the clinical trial at Stanford are nothing short of a miracle. These meds work overtime to blast any cancer cells lurking in my bones or pleural cavity, just as my Dustbuster® vacuum sucks away those pesky spiders lurking in hidden corners of my precious abode. I trust the drugs to do their duty for a long time. But as an optimistic realist I know that cancer cells can become resistant to any kind of therapy, and they know my body far better than I do.  It’s wise, therefore, to make plans with the understanding that circumstances can change.

In the meantime I forge on into 2014, not having known at this time last year if I would even be around to start watching Season 4 of Downton Abbey. But here I am, anticipating it just like so many Americans who don’t struggle with Stage IV anything.  Life always has uncertainties; I’m just reminded of that more frequently than most. The key is to find joy in the journey.

What do you think will bring you joy in the new year?


Bucket List

  • Posted on September 7, 2013 at 6:06 pm


Maybe I actually have time to create–and partially fulfill–a bucket list. Those 10,000 things to do before I die. Wouldn’t that be cool?

On my last oncologist visit the good doctor said she’s going to check my clinical trial protocol to see if I can have scans less frequently. Wow! Really?

Having less frequent scans would be such a blessing. Not only are the scans expensive and require extra trips to the hospital, but they involve a contrast dye to which patients can develop an allergy over time. I hadn’t considered the consequences of a constant barrage of chemicals and radiation to the system. Frankly, I didn’t think I’d live long enough to have to worry about the long-range effects of alien substances forced into my veins. What a good thing to worry about! I’ll take it! It surely beats thoughts of hospice.

The other item of interest that I learned at this latest appointment is that I’m the only one at Stanford left on this particular clinical protocol. I’m charting new territory for those who have or may get breast cancer. Maybe they can benefit from what is learned from my genetic material and cancer history. Maybe women like me with no family or genetic history who have aggressive breast cancer will have a treatment answer, a lifeline of hope for the future. The ramifications are startling.

Now back to the bucket list.

What do I want to do with my remaining time? Travel used to be so important to me. Now it’s way down on the list. Driving to my treatment center is exhausting enough. I’ve seen so much of the world through prior business and family trips that I don’t feel the need to explore yet another gorgeous place on this blue gem of a planet. I can google locales that catch my fancy; I can watch movies; I can read the blogs of my fellow breast cancer sojourners to see what’s happening in their respective parts of the world or on their travels. In other words, I can climb the mountains and traverse the valleys and rivers vicariously.

High on my list would be holding a grandchild for the first time. Or re-reading some classic books I haven’t touched since high school. Or having my backyard transformed into a garden of plants with low maintenance requirements but lots of colour. Or going out to eat or shop with a friend. Or playing Scrabble or Mexican Train with like-minded gamers. Or learning ukulele better so I can play solos with my fellow musicians when we perform at senior centers. Maybe I’ll even tackle Somewhere Over the Rainbow/It’s a Wonderful World with decent strumming and smooth chord transitions. Quite a tall order. But these are the kinds of strivings that rock my fledgling thriver boat.

What kinds of items would I find on your bucket list?

The Balancing Act

  • Posted on April 23, 2013 at 1:18 pm


A balancing act. The challenge of all Stage IV cancer patients.

How do we balance quality of life against quantity of life? How much treatment are we willing to endure to prevent the cancer from starting to grow again?

I am now off taxol, that traditional chemotherapy for breast cancer that can do a number systemically on all cells. I’m still suffering from fatigue and neuropathy in my limbs and digits. Loss of appetite plagues me. And some other effects that it pains me to enumerate.

Each day I wake up determined to do something productive in the morning, because by mid-afternoon I am ready to veg out in front of the flickering screen of images and sounds designed to entertain. What can I get done? Perhaps scan some old photos into my computer and reminisce about the good ole days. Or reach out to prune or reach down to yank weeds in the front lawn so the neighbors don’t wonder why this woman who looks so healthy can’t keep up a perfect-looking landscape. Or maybe do laundry and clean up a few rooms that I use regularly.

I occasionally attempt to make a soup, which may or may not be a smash hit with my taste buds.

The most soothing things I do now are to play ukulele and read or watch DVDs in bed. Or, as happened the other day, accept an invitation from a friend inviting me to a church party.  I wasn’t planning to come to this event as there might be limited seating or the food might not agree with me. There is always some excuse not to attend a function, especially in the evening when I am at my worst. But I am so glad I agreed to accept her challenge. The laughter, the seating that God provided out on the restaurant patio where the weather was perfect, the band that played all the oldies I could sing along to, the dancing (at least my watching it), the small talk, having the guitarist come over during the break and sit right down next to me.  What a trip!

Yes, I do resemble a clown in the circus. I can just hear the hawking: “Come see the skinny lady manage the tightrope act with no safety net!”  Yet, in many ways I do have a net in case I fall. The safety of friends, including one who puts me up and puts up with me when I have to go to the hospital every three weeks and others who invite me to their homes or other places, and the safety of my faith.

At least for now when the sun wakes me up I get up out of bed on legs and arms that can move, get dressed, and scrounge out a minimally appetizing meal even though I’m not hungry. The continual side effects definitely present a challenge, an adjustment, even a game changer. But so far, it’s worth getting up each morning to make a difference, if not in my own life, then in someone else’s.

Do you have activities that keep you motivated and make you feel alive?

Adjusting to Life Anew

  • Posted on March 7, 2013 at 5:30 pm

2013-03-01 17.45.18

“You Can’t Go Home Again.”  In his novel of that title, published posthumously in 1940, Thomas Wolfe exposed a community that shunned its hometown author. Taken in a different context, this message certainly is one I didn’t want to hear in the last few months.

So what has it been like to re-enter earth with a sense of normalcy?


When I returned home from my last treatment (after staying with my wonderful friend), I was greeted by the flowering plum tree in my front yard. It’s a welcoming sight, one of hope for the future. The tree was a sign that I needed to take care of my house, purchased last September, because I was going to live there for some time.  So while adjusting to the side effects of treatment, I am taking care of some “honey-do” items. Some of these tasks I can tackle myself, such as unclogging drains and oiling locks. But others require the expertise of the professionals.

A guy who installs blinds came in to give my house a sense of privacy. How the previous owners could live without any coverings on any windows is beyond me.

The cable TV guy connected up my new flatscreen, allowing me to enjoy TV after over thirty years without it. The thrill of watching Downton Abbey has not escaped me.

Then a specialist came around to make my garage door as easy as possible for me to open and close. It gives me a sense of order to have the house secure, yet accessible.

Tomorrow I expect a handyman, recommended by a friend, to take care of a variety of tasks that ordinarily would be handled by a spouse.  We’ll see how many he can take on and what he has to leave for a contractor specialist.

I try to focus on the hope of living in this new abode as I manage my symptoms: becoming cold as the afternoon wears on, tingling in hands and feet, and a general fatigue and achiness that can’t really be described. Food isn’t as enjoyable as it once was; in fact, my taste buds are quite fussy about what goes down the hatch. I also don’t experience hunger. It’s strange not to get body signals that alert me to the need for sustenance.  I have to rely on the clock.

I’m also taking care of needed professional services like eye exams, dental cleanings, tax preparation, and trust planning. All sensible, and collectively reflecting a cautious optimism for the future. I was relieved to discover this week that I don’t have glaucoma; I’m just a glaucoma suspect. Would that I were just a cancer suspect, too, but the diagnosis has gone way beyond suspicious.

The latest plans I am making are for my cremation. My rationale is that my family doesn’t need to worry about funeral details when they are grieving. Not that I plan to go away any time soon, but it’s good to get it out of the way.

As Thomas Wolfe said in his novel, “Make your mistakes, take your chances, look silly, but keep on going. Don’t freeze up.” I certainly make mistakes and take chances. Don’t we all? And I look silly sometimes, for example when I forgetfully wore my night hat to the dentist instead of my wig.  But I don’t plan to freeze up. I accept social and church invitations and extend my own as much as I can. In fact, not only can I go home again, but, as the songs go, “You’ll never walk alone” and “I’ll never walk alone.” And I know I won’t.

Autumn Reflections: Day Trippers, yeah!

  • Posted on October 29, 2012 at 1:27 pm
Mt. Lassen Peak as reflected in Manzanita Lake

Last Saturday’s forecast promising sunny fall weather in our area proved right on target. Relying on this prediction, my good friend and I decided to take a day trip so I could say goodbye to a family vacation lake house soon to be sold.

Before our trip up into this mountainous region best known for Mt. Lassen Peak, we stopped at the local coffee drive-thru to snag some Oregon Chai Latte, a black tea with vanilla and spices combined with 2% milk.  We wanted to be jazzed as we made our way up the twisting roadway.

On the way, we found a place to pull over so we could explore snow-fed Deer Creek. Climbing down to the water’s edge, we snapped photos of a small waterfall with a backdrop of yellow leaves dangling from tenuous branches. Big leaf maple abounded with its golden leaves, evidencing a decline in chlorophyll production.  Alder and some western dogwood displayed a pink-orange, while the poison oak has transitioned from pink to orange to brilliant red. It’s rare that I see pink in the fall, outside of pink-tober. What a welcome relief! I hope to paint from the photos we took.

A campsite sits on the opposite side of the road, so we crossed over to explore. At the peak of summer this locale must be packed with families eager to have running creek water for cooling off and for children’s play. If only these summer tourists could see the magic of this heavenly place in the autumn, with its vibrant colors and shifting shadows.

When we reached town we found a gift store where we could browse and window shop. We met some lovely women there, taking the time to chat, share stories, and marvel at the myriad of Christmas ornaments on display. I love the fact that we were not rushed in any way. Leaving this shoppe we headed for the realtor’s office so I could sign papers and get key access to the vacation home.

For lunch we chose Knotbumper, a homey restaurant located in town for over 20 years, one to which I’d never been despite all the summers I spent in this area. A wood-burning stove with a glowing belly graced the main dining room, providing atmosphere and charm. As we sat there, we noticed a marked influx in customers, undoubtedly including those who had gotten a late start up the mountain and were now just arriving to enjoy a hearty meal. From the eclectic menu I chose a lunch called Coyote Flats, consisting of a chile relleno casserole, a tasty navy bean soup and some refried beans and a tortilla.

It was the first meal I’ve finished in a long time.

Knotbumper Restaurant

Sample cuisine

We then ventured next door to a place called “Good Vibrations.” No, we didn’t see the Beach Boys. While we were minutes from a lake beach, we were five hours from any ocean. But we did find unique treasures that would make fabulous souvenirs. According to my friend, who lived in this area as a teen, the store’s building was once a restaurant, with an outdoor eating area overlooking a babbling brook. She remembered the history of many of these buildings in town, so she became a tour guide giving me a glimpse into the past.

When our desire for shopping abated, we made our way to the lake house. Having not been there for over two years, I didn’t know what to expect. But it was exactly the way I remembered it. The big river-rock stone fireplace still dominated the Great Room. Furniture stood where I remembered it to be. The decks still looked out on a lake and mountain scene partly obscured by pine trees. The afternoon was so warm and inviting that I was surprised there weren’t any boats out on the lake. But then again, boat rental season is over and homeowners have brought in their docks for the season. Snow still lingering on the ground reminded us of the significant snowfall they had had a week earlier. So while no boaters were enjoying the lake, this was the perfect day to come, before the weather turned again and the days shortened considerably.

After saying goodbye to the house and locking it up, I jumped into my friend’s vehicle and she drove around the peninsula on which the house sits. We noted how close the homes are to each other because land is so valuable. We passed countless bear and moose mailboxes. We passed the now-deserted beach and tennis courts. I marveled how restaurants had relocated even since I had been there two years ago. Changes of ownership and venue are common in this area where the economy depends mostly on summer tourists.

After leaving the peninsula my friend drove me to the area where her family used to live. She pointed out her old house and the school bus route and the school she used to attend. She actually got bored on the bus despite the beautiful mountain ranges appearing from the windshield every day. I can’t believe it would be boring, but when you are a teenager and the route leads to school, the scenery becomes routine fast.

Cascade mountain range seen from the bus

After we dropped off the house key at the realty office, we headed out of town before the melting snow could turn to ice on the road. We were armed with cookies to munch on as our snack. Our first stop was just out of town where we searched for the perfect sugar pinecones to take back. Ponderosa pines are prominent in the foothills near where we live, but the sugar pines with their enormous cones grow much further up into the mountains. What great decorations these will be for Christmas!

Once we got back on the road that followed Deer Creek we pulled over to get a closer glimpse of the Indian rhubarb growing there.  The big, fan-shaped leaves of this plant are beginning to blaze in red. For those unfamiliar with this water plant, it is a slowly-spreading perennial native to mountain streamsides in woodlands in the western United States (southwestern Oregon to northwestern California).  We had missed it on the way up and didn’t want to pass up the opportunity to zoom in on its once-a-year glory.

Indian rhubarb before the fall

When we returned to our home city, I gave my friend a huge hug of gratitude as we parted ways. I told her this trip was the best I had ever taken up to that area. No other mountain drive could compare to this one with a beautiful friend who cares and takes the time to stop along the way and live life in the slow lane.

You see, my cancer has likely returned. This was a perfect diversion, an incredible almost-ending to pink-tober, the month my beloved father died. My wish to all is that you would have good friends as I have in this woman willing to drive me to an autumn retreat while I am feeling reasonably well.

Have you a special autumn spot to which you return to enjoy fall colors?

The Hunt for Pink October: What Helps Cure Breast Cancer?

  • Posted on October 7, 2012 at 4:51 pm

The pink culture that defines breast cancer awareness sears our consciousness this month, with everything from pink helicopters to pink slugger violins to pink sleeves by quarterbacks.

But porn?

I just discovered that the adult entertainment site PornHub will donate one cent to a breast cancer research charity (Save the Boobs) for every 30 porn videos watched.


How generous! How wonderful that women will be exploited so that a penny will go for research for every 30 videos men watch to satisfy their prurient interest.

This is wrong on so many levels. Porn is not just a healthy outlet for men who need sexertainment. It has consequences no matter how you slice and spice it. The sex-slave trade is only one of the many dirty secrets that porn kings want to hide. Titillating videos of this nature are also associated with such unpleasantries as incest, rape, underage sex, and marital infidelity.

Many men have been addicted to porn for years, helpless to stop it no matter how hard they try. Some need more and more thrills to get the same self-pleasuring reaction to the images. Behavior that feeds the ever-deepening addiction can lead sadly to break-up of families. How does family breakup help those with breast cancer? Breakups adversely affect finances, and cause undue stress that depresses the immune system. I should know; I’ve been there.

Such flippant treatment of breast cancer is an insult to women everywhere. It’s belittling to those who’ve had a lumpectomy or mastectomies and/or breast reconstruction. It’s especially an affront to those with metastatic disease in which the cancer has spread beyond the breast to distal parts of the body. It’s a slap in the face to those who have already died from this dreaded disease.

And what about the disfiguring effects of lymphedema, an arm swelling that can occur after breast cancer surgery and radiation? No one wants to mention that ugly little truth, either. Who wants to address how the swelling can lead to complications beyond just cosmetic concerns, such as infections? Who wants to discuss unsightly bandaging?  None of those topics is erotic, let alone stimulatory.

Instead of porn videos, these seekers of thrills should be required to see the The SCAR Project photo display.  According to their website, the SCAR project is “a series of large-scale portraits of young breast cancer survivors shot by fashion photographer David Jay. Primarily an awareness raising campaign, The SCAR Project puts a raw, unflinching face on early onset breast cancer while paying tribute to the courage and spirit of so many brave young women.”

One look at these images will take away the pink glitter people continue to sprinkle on breast cancer.

Being encouraged to watch porn videos tempts men and gives them a convenient excuse to feed their addictions, while hurting their loved ones. Are you fed up with this low blow to the cause? Are you tired of how breast cancer awareness has become a form of sexploitation? Then it’s time to make our voices heard. Join me in putting an end to the porno-pink nonsense that damages our society and putting money into causes likely to effect change.

I particularly like to read The Pink Underbelly during October as the author points out all the pink inconsistencies that abound. In her latest post she describes Dr. Susan Love’s recent initiative: The HOW Study. This study is designed to find out the causes of breast cancer so we can prevent the disease from occurring. According to Dr Love’s website, some 280,000 women were diagnosed with breast cancer last year. Of those, 40,000 women will die from the disease this year. Let’s get these statistics under control, not by watching porn, but by embracing worthy studies like this one. Another organization of value is The Army of Women. I’ve participated in several Army of Women studies and will continue to do so every chance I get, because I believe they will make a difference.

Down with pink! Instead, I’m seeing red. Let’s neutralize the color of the hunt this month by avoiding all causes that sport “tatas” and “boobs” and supporting causes that matter.

Texas Lymphedema Conference

  • Posted on September 30, 2012 at 1:05 pm

Because I just moved, I had to delay this follow-up post to my earlier post this month on my week-long trip to Dallas. I didn’t come to the heartland just to see my son, although that alone would be ample reason to visit. The main reason?  To attend, as a patient-advocate, the biannual National Lymphedema Network (NLN) Conference for healthcare professionals.

This year the exhibitors outdid themselves, and the presenters waxed professional in every respect.

Wednesday, Sept. 5:

The Tenth NLN conference Research Roundup began on Wednesday with preconference workshops targeted for the medical practitioners. We patient-advocates also could participate if we enrolled separately in the courses. Topics ranged from management of lymphedema (including skin and wound care) to compression and exercise strategies for those with lymphedema. One workshop targeted medical doctors who were interested in learning more about the anatomy and physiology of lymphedema. How refreshing that M.D.’s attended this, so they can take home what they learned to their community of professionals who never heard of lymphedema. We hope the lessons learned from the course will be broadcast all over the U.S. and across the world, since so few doctors know what to do about lymphedema–if they’ve even heard the term.

Thursday, Sept. 6:

We patient-advocates were treated each morning to a special mentoring session with medical doctors specializing in lymphedema. They patiently answered all our questions and helped us understand better the medical jargon and design of clinical studies. Thursday morning we had a nice chat with the doctor assigned for that day, and got acquainted with each other.

The plenary sessions that followed provided a wealth of information on lymphedema research. What I found most interesting were the various presentations on surgical options for lymphedema. The clinical results have come a long way since 2010, when we had the last NLN conference. A pioneering surgeon in Paris has performed more than a thousand lymph node transplant surgeries with some success. Now a surgeon in the LA area who specializes in breast reconstruction surgery has taken up the gauntlet to practice lymphedema surgery in the U.S. His presentation, titled “Combined Lymphatic Liposuction and Vascularized Lymph Node Transfer for Treatment of Long-term, Non-pitting Lymphedema,” raised many questions. After surgery, the patient must continue with the self-care portion of complete decongestive therapy. And most patients must still wear a compression garment the rest of their lives. An interesting discussion ensued on the risk of transplanting healthy nodes from the groin area to the axilla–whether lymphedema could develop in the leg as a result of removal of the nodes.

Friday, Sept. 7:

We had to select in advance our workshops on Friday. I chose “Developing Research Competence,” “Unraveling the Mysteries of Insurance,” “Living with Lymphedema – Impact on Self Care,” and “Integrative Approaches to Lymphedema Management.” Through these seminars I learned how to conduct an evidence-based research study, how to navigate through the Medicare quagmire, how to ensure I give myself the optimum self-care regimen, and how to eat properly and relax. During the last workshop, the lavender scents passed around to us and the lilting voice of the Canadian speaker lulled at least have the audience to sleep, I among them.

Jan relaxing at cancer survivor exhibit in Dallas

Saturday, Sept. 8:

The plenary sessions took over once again. This time we learned about yoga for breast-cancer-related lymphedema (a good thing), body image for those with head and neck lymphedema, and lymphatic abnormalities in contralateral arms in breast-cancer-related lymphedema revealed by near-infrared fluorescence imaging. I don’t have lymphedema in the arm where surgery wasn’t performed, but I know people who do. I plan to be as careful with that arm as I am with my affected arm. No sense taking a chance in view of this new study.

Saturday also gave us two lively debates on lymphedema surgery and on the surveillance model for breast cancer rehabilitation. We got to hear pros and cons for each modality and make our own decision on who is right, or if anyone is right.

Sunday, Sept. 9:

Unfortunately, I had to leave early Sunday morning. But the lectures continued, including some on pneumatic compression for lymphedema.


The Exhibit Hall was open for business up through Saturday. This year the hotel ballroom hosted more vendors than I’ve ever seen before. The options for compression garments are overwhelming. Whether you want to be a fashion diva or blend into the environment, whether you have leg, arm, head-and-neck or truncal lymphedema, there’s a product designed specifically for you. And of course pumps and FlexiTouch devices were on display for all to see. Early one evening I was able to get a neck and shoulder massage from one vendor. After that experience, I wanted to go back each evening for an encore performance!

If you are a member of the NLN, the next issue of LymphLink that you receive will contain articles about the conference by all the new 2012 patient-advocates. They will present their impressions and take-home messages from all that they digested.

This conference outshone all the previous NLN conferences I’ve attended. And that’s hard to do!

Now for some pictures of downtown Dallas that my lymphedema therapist took at one of the rare times when we had free moments to spare:

Cattle statues near conference hotel

A cowboy with his cattle in Dallas

Dallas skyline from our hotel

Hotel with Reunion Tower restaurant in view

Old courthouse in Dallas near JFK assassination site

JFK Memorial


Texas Fun – Deep in the heart

  • Posted on September 16, 2012 at 9:41 pm

My recent visit to Texas confirmed the cliche that everything is bigger there.  My time spent in this special state well exceeded my expectations, which were already big.

After my son Josh picked me up at the Dallas-Fort Worth Airport two weeks ago, we sped away to Waco, home to Baylor University where he’s a senior. That night we caught the last half of the first Baylor football game of the year.

The next morning, Labor Day, after I enjoyed a tasty breakfast at the hotel, we headed off to Homestead Heritage at Brazos de Dios near Elm Mott, TX.  That particular day they celebrated a Sorghum Festival with demonstrations in so many ancient crafts: blacksmithing, weaving, grist milling, pottery making and farming. Complete fun, and an escape from all things California.

Hungry, and unable to wait 1.5 hours to get a seat at the Homestead Heritage cafe, we made our way to Cracker Barrel, where we had to wait only 20 minutes for a table.  No worries. We easily spent the time scouting their gift shop for the perfect birthday present for his girlfriend. Only a mom could help him solve this problem.

After a lovely lunch we took a break to read in the campus library for a couple hours–I with my i-Pod reading “Invisible Man” and Josh with some kind of textbook.  Eager to meet his roommates, I implored him to take me to his apartment where his friend told me they would be.  They are just as charming as Josh’s description of them, polite and modest.

Off we then headed to buy us some bubble tea (with black tapioca in the bottom). Mine, an almond concoction, was divine in every sense of the word. We took our drinks over to a famous suspension bridge that crosses the Brazos River. Following tradition, Baylor students throw corn tortillas over the side to see if they land on a concrete pier. If not, the ducks dive and swoop for them. Everyone wins.

Next on the whirlwind tour was a visit to a local park laced with trails and views. Josh coaxed me into climbing the 89 stone steps of Jacob’s Ladder. The problems?  I’m out of stair-climbing shape, the temperature well exceeded 100 degrees, and almost every step was higher than a standard step. The next day my legs paid for it, but it was worth the exertion. Anything to have fun with my son in the sun.

The next park destination was Lover’s Leap, which overlooks the river. A fun place to take photos of the view–and of us!

The afternoon wasn’t complete without a kayaking excursion. The Baylor Marina sported all kinds of water craft that day when the students were off from classes. We headed out onto the river and explored inlets. A thoroughly magical excursion, especially when I thought I might never kayak again because our lake house must be sold.

The day still hadn’t ended.  We feasted our eyes and taste buds on a local Thai restaurant, a favorite haunt of Josh and his girlfriend. The evening wouldn’t be complete without topping it off with a frozen yogurt complete with delish condiments: fruits, syrups and candies. Fun stuffed us to the gills!

We ended the night watching the movie “Madagascar” at his apartment, a flick requested by yours truly. When he took me back to the hotel, I still had energy for a short swim and hot tub immersion in their indoor facilities.

If this wasn’t heaven, I don’t know what is.

The next day Josh had classes, so he picked me up late morning and we ate lunch at the college dining hall. This place was food court heaven, with any type of cuisine you might desire. Taking advantage of this rare opportunity, I filled my plate high with salad, main entrees, and wraps. Then I went back for a big bowl of soup. You’d think I were a starving refugee.

After lunch Josh dropped me off at Common Grounds, a popular coffee and music hangout adjacent to the campus. I reveled in the funky nature of my environs and the college conversations all around me.

When Josh picked me up he gave me a leisurely tour of the campus, including the building where he spends most of his time. Of course we had to make our obligatory trip to the college bookstore, where I purchased a Baylor University Mom decal. Then we stood in line for root-beer floats at the afternoon Dr. Pepper Hour.

Soon enough, it was time to be dropped off at the campus Starbucks while Josh attended his last class of the day. Sipping a skinny vanilla latte, I listened in on various conversations as I tried to read my book. Soon Josh came and we went out for TexMex at a dining establishment with hubcaps on the ceiling. We finished the night watching “Madagascar 2″. What else could we watch but a sequel?

The next morning, after a hearty omelet breakfast at his dining hall, we headed for Dallas, for my lymphedema conference. More on that experience in my next blog post.

For this post I decided just to focus on the time Josh and I could spend together. I had been looking forward to this trip for two years, since the last National Lymphedema Network conference in Orlando.

And it finally came to be.

The campus visit was far more than this mom (with all the physical and emotional pain she has experienced over the past year) had anticipated. I probably gained five pounds in two days. But I was deep in the heart of Texas, where my son resides and my heart belongs. Where bluebonnets spring up along the roadside at certain times of the year. Where else would I want to be?

Where do you enjoy going when you take a trip? Do you often see family?