General

Cancer’s Isolation

  • Posted on January 21, 2015 at 4:57 pm

SERIOUS-ISOLATION1

Loneliness is a side effect of cancer that often gets overlooked. It plagues not only senior citizens who are caregivers, widowed or otherwise single. It can hit anyone at any age who has cancer, particularly advanced cancer, i.e., cancer that has spread beyond its original site.  The sense of isolation that we with metastatic disease face is summed up well in the post by my online friend Nancy.

Fortunately, we live in an age of technology that links us together in ways unthinkable even 20 years ago. For many people, in-person support groups don’t work, often because their meeting locales are too far away, or the patient is too fatigued or unable to drive. In such cases, online support groups fill the gap. Discussion groups and forums worked for me in 1997 when I developed lymphedema and could not find a local support group, even in a major metropolitan area. Since then, many social networking sites have popped up that can supply those needs, including Facebook, Twitter and blogs.

Upon diagnosis with Stage IV cancer, a more isolating disease than any I have experienced to date, I found Inspire, the Advanced Breast Cancer Community, to link myself to many people in the same lifeboat in which I am adrift. We connect globally on levels that individuals can’t understand unless they have experienced the profound impact such disease has on their everyday lives. I have had a perfect stranger who posts on Inspire urge me to call her because, like me, she had breast cancer spread to her brain and was eager to share her treatments and status via telephone. What a way for a turtle like me to be coaxed out of her self-made shell of isolation!

T0 fend off–or even conquer–loneliness, it’s important for the patient to risk reaching out to his or her local and online communities, whether it is strangers, friends, church, or family members. Often family is not in town and may be working and unable to provide the support craved so much by the patient. Friends can help out on weekends if they work, and offer to take the patient out shopping or for coffee or a bite to eat or even to play games or an instrument. I had friends come from three hours away to spend a few hours praying and singing with me. I can’t drive, so this was an extra-special treat. Making such efforts is a great investment that pays off in dividends while the patient still welcomes social interaction. It’s harder to build up a friendship community when the patient is more lethargic and less open to visitors as the disease progresses.

I don’t have the courage and desire to travel far from home that I had even six months ago. Having radiation to the brain has slowed me down and taken away some bucket-list items that were once important to me. I, like many patients, adjust and adapt because of built-in resilience. I revise my bucket list or even abandon it if the activities seem forced or guilt-provoking.

One article that addresses loneliness in cancer patients is entitled Tips to Fight Loneliness Associated with Cancer. My friend Marie has written an affirming post touting blogging as a way of decreasing the patient’s sense of isolation. If we patients can muster the energy to write our own posts, it is gratifying to see comments and interact at that level.

We patients suffer enough side-effects that are out of our control. Let’s tackle this scourge called isolation if our fatigue levels allow us to take command of the controls we have.

 

Please feel free to share what has worked for you to overcome your own or another’s sense of loneliness.

The New Year – An Unknown Expedition

  • Posted on December 27, 2014 at 8:54 pm

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2015? Was Y2K that long ago? Many advised in 1999 we head for the hills and stockpile needed supplies as the new millennium dawned. They predicted a devastating worldwide technology glitch.

How far we’ve come in information technology!

What about medical technology? Back in 2000, I was in remission from my first occurrence of breast cancer. Blissfully I cruised into the coming century. How could I know that a personally devastating recurrence of the cancer in another early stage would happen? This cancer was HER-2 positive, an omen I should have taken more seriously. Perhaps I should have abstained from alcohol, shunned binging on sweets, cut back permanently on work hours that were stressful, yet rewarding. Then in 2012 the diagnosis of all diagnoses–my personal Y2K–screamed my condition of stage IV breast cancer, the final stage that may be treatable, but is, in my trusted oncologist’s own words, not curable.

Have we come that far since 2000 in our knowledge of breast cancer? We certainly have made advances and know far more about the disease. We have new treatments available that were only in early-stage research at the turn of the century. Yet there are subtypes of breast cancer of which we know nothing. Some patients thrive on Kadcyla, the latest anti-HER2 antibody conjugate drug that is the most promising yet. Others have to find alternatives, desperately clinging to any remaining months they might be afforded. Others, like me, found Kadcyla a miraculous drug keeping the cancer in my bones at bay, but not preventing this ugly disease from entering my brain last September. The only way I found out about the brain metastasis was through a seizure.

Now, in addition to undergoing scans of my whole body to see if the cancer has progressed in my bones, or spread to my lungs or liver, I require scans of my brain. These brain MRIs show if this monster has been conquered by the latest targeted radiation or if it has eluded all attempts to eradicate it. We just don’t know enough at this point.

Jan in Oct. 2014 3 days after the brain seizure

Jan in Oct. 2014 3 days after the brain seizure

I am thankful to be alive as 2015 approaches. Two years ago I never expected to last this long. In the meantime I had the honor of seeing two sons married. I await my next brain scan in January and receive targeted antibody treatments every three weeks until they no longer work or I die of another cause. We do what we must. I will continue to exercise, eat nutritious meals, pray, and enjoy the company of my family and friends.

Miracles still happen. I live on the wings of prayer and dependence on God as the middle of this decade unfolds and I embark on another year of an unknown expedition. He provides the light that keeps on giving hope to patients. No one knows how long those candles of life will stay aflame, but we do all we can to avoid extinguishing them. My wish goes out to each patient, whether in early stage or a later one, that more drug prospects will be offered and more government approvals made to allow the most options for effective treatments.

Blessings to you all in the New Year!

 

 

 

A Brainy Day

  • Posted on October 17, 2014 at 2:52 pm
Lundberg Farms tour 9-29-14

Newcomers Club in Richvale, CA on tour of Lundberg family farms

The day of that lovely tour of the Lundberg organic rice farms ended on a note not so sweet as the apple-cinnamon rice cakes cooking very near where I am standing on the right. That afternoon a seizure brought me down to the floor of a store where I was being fitted for a breast cancer fashion show. Of all places! At least I wasn’t driving at the time.

Two nights in the hospital–with a brain MRI sandwiched in between–revealed that the seizure was due to the spread of little cancer cells into my brain. This was not a result I had expected after having participated in a clinical trial protocol for almost two years. The two drugs sponsored by the trial are state-of-the-art targeted proteins designed to kill off anti-HER-2 rogue cells wherever they appeared. While the regularly scheduled CT and bone scans I endured revealed very good control of the spread to the ribs, spine and pleural area, they were not designed to look at whether these drugs cross the blood-brain-barrier to prevent the forward march to my gray matter.

Since the seizure my new medical oncologist did inform me that due to the aggressive nature of my cancer, 1 in every 3 patients does have the cancer enter the brain.

What now?

I plan to call someone who has been through the brain treatments and is on the other side of it.

An MRI using a stronger magnet just this morning will inform the radiation oncologist and his trusty sidekick neurosurgeon how to handle what I hope will be targeted radiation. This is preferable to the whole-brain variety of radiation, as the latter is the standard of treatment that causes cognitive decline. I would hate to outlive my brain.

A whole body PET/CT scan scheduled later this month will show if I can keep going with the current treatment I had been receiving before this earth-shattering news. It would be a blessing if I can continue on with being infused with those proteins to keep the cancer out of the rest of my body.

Not everyone in my position believes in God or holds on to spiritual grace and faith. In my case, I do believe prayer is upholding me as I look to the Savior of my life and hold on to love, friends, appreciation of the little things, laughter, everyday miracles, and light. We all cope in ways that work for us. For whatever time God has me on earth, I plan to use my words and actions to inspire compassion and hope in others. As more medical research develops, we will find many more ways to treat metastatic breast cancer, as a chronic disease, and eventually a preventable disease. Look how far medical advances have already come.

Looking onward and upward with hope toward good scan results and treatment options.

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?

Words Are All I Have

  • Posted on April 17, 2014 at 12:27 pm

 Pen on manuscript

 Words are all I have

Tempting me to tell

Stories born of hell

And all I have are words.

 

Writers craft those words

Baring bold their soul

Making others whole

And words are all they have.

Thanks to Audrey Birt for passing me the blogging baton. Am I up for the challenge?   Writing provides healing to me, a metastatic breast cancer patient. Baring the soul, sharing the joys and pains, it’s a journaling tonic essential to recovery. Below I share my answers to the personalized questions about writing posed in this tour. To see what earlier bloggers have expressed on this tour, visit the must-read posts by MariePhilippaCatherine and Audrey. Each speaks from her heart.  The baton has now landed in the Sacramento Valley of northern California, an agricultural heartland.

What am I working on?

I have lots of irons in the fire. Some involve preparing inspirational talks at cancer centers and other venues where I hope to make a difference in patients’ and caregivers’ lives. Some involve writing guest blog posts as well as my own posts. I also craft stories shared in books and magazines such as Fear Not, a devotional compiled by Anne Baxter, and Cure magazine. Other efforts include an e-book I’m writing about living with metastatic breast cancer as a single woman and what others can learn from my life lessons. In addition, I serve as editor on the Board of the Lymphedema Advocacy Group, which lobbies Congress to pass a bill requiring Medicare to pay for needed compression garments for lymphedema patients.

How does my work differ from others of its genre?

I write from the perspective of a metastatic breast cancer patient with lymphedema, a lonely road less traveled by breast cancer survivors. Rather than focus on clinical aspects of treatment or the travesties of pink merchandizing (which really do need to be addressed), I tend to personalize my story, to make it real to the general reading audience. My writing occasionally steers in the direction of advocacy, particularly regarding lymphedema. But mostly my muse inspires me to share unexpected joys and hopes found in the day-to-day grind of living. I’m tempted to complain about the frustrations that continue to plague my existence as further side effects of treatment take their toll.  But I choose more often to reveal gems in the rough, aspects of life that could easily be overlooked when aches and fatigue seek to speak the loudest.

Why do I write what I do?

My personality tends toward a realist, coated with a clear veneer of optimism.  I don’t believe that a positive attitude will determine the outcome for a breast cancer survivor, but I feel better when I infuse myself each morning with a healthy dose of optimism. Rose-colored glasses may seem simplistic, but I believe my readers would benefit from knowing that a Stage IV diagnosis of breast cancer does not necessarily equal impending death. They may never read about or know anyone else who lives with this diagnosis. My goal is to educate caregivers, family and friends so they are more equipped to engage and instill hope in their patients and loved ones. As a woman of faith, I also believe that expressing gratitude for the small things in life can go a long way toward forgiving oneself and others for any perceived cause of this disease. Whether blame is real or imagined, we can beat ourselves up, and others, too, for causing stressful environments that upset patients and survivors. Placing focus on gratefulness for life and its little pleasures can dissipate some of that negative energy.

How does my writing process work?

There is no rhyme or reason to how and when I write. Some days I exude enormous amounts of energy, and other days? Well, not so much. When the spirit moves me and I come upon a suitable topic (from current news, other blogs, articles, my daily victories), I sit down at my desktop and pound away on the keyboard. In polishing and re-polishing my rough draft, I sometimes surprise myself by working straight through, proofing as I go, and then posting at the end of a marathon session. Sometimes I’ll forget to eat! Other times I let the rough draft stew overnight in my Crockpot brain and serve it up within the next few days. When I prepare a talk, I especially benefit from taking extra time to mull it over as it evolves from outline to outright speech. But if a writing deadline looms, the end-result must follow quickly. Deadlines can be beneficial, however, even for someone in my condition, because they put a fire under me, allowing the creative juices to flow freely.

Having had my say, I now would like to hand the blogging baton over to Ronnie Hughes @asenseofplace1, whom I met through blogging and through the Journeying Beyond Breast Cancer blog.

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Together with his partner Sarah Horton, Ronnie has run their creative enterprise, a sense of place, since 1995. Ronnie writes about observations of life in Liverpool, England, walking, and other topics he’s interested in. His posts are filled with incredible photographs that come alive with his engaging captions and wit.

 

 

 

I also turn the baton over to my good friend who calls herself Renn @TheBigCandMe, whom I also came to know through blogging and journeyingbeyondbreastcancer.com.

Renn imageThis blog is Renn’s way of dealing with the emotional and physical ups and downs of breast cancer and reconstruction in all its gory glory, while finding the humor whenever she can. She provides cancer resources under “Want to Know More?”.  Her writing will educate, inspire and lift up all who seek to enrich their lives through reading.

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 metavivor.org 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.

 

 

Life in the Surpassed Lane

  • Posted on March 30, 2014 at 10:39 pm

 Double yellow line

It’s been almost a year and a half since the diagnosis that shook (but not took!) my life: the Stage IV variety.

The top question I’m asked is when my treatments will end. Another popular question? Am I considered in remission. Innocent questions like these abound because the public is well aware of the pink campaign that highlights earlier-stage breast cancer diagnoses, those in which treatment will end without talk of hospice care and in which remission IS possible. In my season of life, a season no one wants to enter, remission is not an option: “cancer being stable” and “no evidence of disease” are the operative phrases (pun intended) for those whose cancer has not progressed. A wonderful primer on this not-so-wonderful disease awaits the reader who really wants the scoop.

As to hair, I had been ambivalent about my new white locks, but have come to love them. Many people who know my history think they are fab–even glam–and encourage me to keep my hair gamine-cut and au naturel. At a dining establishment I frequent on my way to Stanford, the white hair has landed me a senior discount without my asking for it. But sometimes my silver-topped pate triggers discussions about how young a 79-year-old looks who still has some natural dark hair. The ensuing conversation is rife with justifications for coloring hair. We ladies are so protective of our looks, something ingrained in us since early childhood.

Regardless of what our culture thinks of premature silver locks, I’m grateful to have hair while on continuous chemo, and that it is coming back (now that taxol is finished) fuller than ever. The ability to keep my hair is due to new targeted biologics (Kadcyla and Perjeta). Wearing wigs or hats and scarves isn’t something I would desire to do for the rest of my life. And dyeing my hair with chemicals seems harsh, when I don’t know what caused my cancer in the first place.

A nice recent touch to my new-normal life? A bubble bath. In my former life I luxuriated in them. But up till a week ago I had not taken a bath since before diagnosis. But before I am judged as unhygienic, let me explain that I do take regular showers. What made baths so undesirable were regular infusions of chemo, particularly taxol. The drug made me shiver so profoundly that I didn’t care to undress even long enough to go into a hot bath. I was that cold. It seemed a waste to turn the thermostat so high just to get me into a tub. Now, however, I’m able to withstand the cold in the amount of time it takes between undressing and entering the suds. I reveled in a book while peripherally watching real candles flicker. I didn’t even feel guilty that perhaps this bathing would trigger another urinary tract infection (UTI), a frequent side-effect I’ve been battling due to the Kadcyla. I decided that taking a bath was worth the risk, and if I got the UTI, I would simply not take baths anymore.

If nothing is risked, nothing is gained.

Life in the surpassed lane doesn’t have to be shabby. Some days I’m content to watch as others rush past me in their eagerness and impatience to get from point A to point B as quickly as possible. Meanwhile, I can soak in my more relaxed lifestyle, cooking more meals at home without resorting to so many frozen entrees and take-out fare. These seem to be a scourge of the harried, two-income family. I can strum my ukulele without glancing at the time worrying about when the gym will close. I can take walks instead of runs; I can stop to watch a heron’s nest or spot an owl in a tree near the lake where I live. I can even still bend over to yank a dandelion from my front yard or plant a pot of carnations.

Enjoying each sensory experience is magnified with a Stage IV diagnosis. It’s one thing to say “I’ll appreciate each new day now,” once you’ve had a pre-Stage IV cancer diagnosis. It’s another thing to say “I’ll appreciate each moment of each day when I’m not in pain” when the clock is ticking on the Stage IV route.  The horses pulling my coach prance at a more leisurely pace. My gratitude journal abounds with wonders happening all around me. And I’ll continue to fill it as long as I can hold a pen or type on a keypad.

Such is the life of the idle, at least my idea of idle.  It might not be ideal, but it surely beats the sharp turns  of the overloaded road.

Which lane are you traveling in?

Lymphedema Awareness Month

  • Posted on March 10, 2014 at 10:28 pm

LE awareness

Because March is Lymphedema Awareness Month, as a patient-advocate I cherish the opportunity to educate readers on lymphedema and its relation to an important bill pending in Congress. Everybody around the world recognizes the pink ribbon for breast cancer awareness, but how many know what the turquoise ribbon represents?

Lymphedema is a chronic condition caused by the accumulation of lymph fluid that causes tissue swelling, most commonly in the arms and legs. It is estimated to afflict about 3 to 6 million Americans.

Lymphedema is often called “cancer treatment’s dirty little secret.” While individuals can be born with a primary form of lymphedema, the majority of cases are secondary in nature, most often caused by cancer treatments that damage the body’s lymph system or immune functions. For cancer patients, lymphedema is one of the most significant survivorship issues. Breast cancer, in particular, is one of the most common causes of lymphedema, with an estimated incidence rate of about 20%.

Fortunately, there is hope for lymphedema patients in that the risks and complications of this disease can be mitigated by Complete Decongestive Therapy (CDT), the gold standard for treating lymphedema. In addition to manual lymph drainage and decongestive exercises, an essential component of CDT is compression therapy. Unfortunately, Medicare beneficiaries currently lack coverage of the compression supplies needed for CDT to be completely effective. Lymphedema is progressive if left untreated and can put patients at greater risk for serious infection and disability.

As a breast cancer patient I deal with the daily challenges of managing lymphedema in my arm. In my case the swelling was caused by removal of lymph nodes to stage my cancer and by radiation under the arm as part of my treatment. Lymphedema therapists treated my lymphedema by CDT in 1997, and since that time my insurance companies have paid partially for my compression garments and bandages. But when I become a Medicare beneficiary, I will lose that coverage.

To help patients like me successfully treat lymphedema and manage their symptoms, it is important that Congress pass H.R. 3877, the Lymphedema Treatment Act. This legislation will provide Medicare coverage of doctor-prescribed compression supplies while also helping to reduce total Medicare spending, decreasing the incidence of costly complications and disabilities associated with the disease. Many Medicare patients cannot afford compression garments, and the resultant swelling brings on an unnecessary loss of functions in the activities of daily living.

And many insurance companies follow the example of Medicare: if Medicare does not provide coverage, they also deny it. Congressional approval of this Act will make such companies reconsider their present policy of not paying for compression garments and bandages.

To learn more about the Lymphedema Treatment Act and how you can get involved, please visit LymphedemaTreatmentAct.org. Passage of this Act would be the compassionate and right thing for Congress to do.

P.S. Thomas Hovatter is the late husband of a friend who serves with me and others on the Board of the Lymphedema Advocacy Group, a grassroots non-profit organization directed solely to passage of H.R. 3877. Thomas died due to complications of lymphedema. His wife has made lobbying for this bill her greatest passion.

Do you or does a friend of yours have lymphedema? If so, does the medical insurance company provide any coverage for compression supplies?

Sixty, the New Eighty

  • Posted on February 26, 2014 at 7:41 pm

female runner

We’re told so much these days that 50 is the new 30, etc. In fact, a recent Harris poll of American adults revealed their perfect age: 50. Men preferred to be 47 and women, 53. The influence of baby boomers on this new finding cannot be overestimated. They showed it was fab to be fifty, and soon they’ll proclaim the wonders of being sixty or more.  So much for the stereotype in the lyrics of the boomer-era Beatles song, “When I’m Sixty-Four.”

But the roaring fifties or sixties remain silent with some like me.

In my case, hitting sixty felt like being closer to eighty, at least from what I understand are the challenges of eighty-year-olds I’ve interviewed. More than a year of continuous chemo treatment has taken its toll on this baby boomer body. I feel cheated out of my supposedly glory years, when everyone else my age seems to be skiing, running, and volunteering for every activity if they are not still employed in a high-paced environment testing their physique as well as their mental acuity.

My Debbie Downer symptoms? Where do I start? Fatigue set in to my legs and my body became increasingly fragile. I apparently now have an injury to my shoulder I didn’t know I had damaged. The pain suddenly came upon me when I fastened clothes from behind or lifted my arm to don a sweatshirt. To prevent mishaps I grasp railings as if the slightest turn of my ankle will send me sprawling. Urinary tract infections plague me like guard dogs. I need grab bars sometimes to get up from a low seated position. I take a dazzling amount of prescription pills during the day and before bedtime. Does that sound like today’s sixty-somethings in affluent Western culture?

I think not.

No longer can I identify with those who want to lose weight, those who still define themselves by their fashion-wear, those who frequent the gym, those who wear anti-ageing creams to keep their life as wrinkle-free as possible for as long as possible. I just need to maintain my weight, force any kind of clothing over my head, and use medicinal creams to prevent more dryness from all the drugs I’m taking.

But how can I complain? I am still on this side of the dirt. Still among the breathing. My mind still functions well and short-term memory is quite sharp. If I live another ten years, I wonder how normal ageing will affect me, with more accumulated treatment under my belt. No one knows, of course. I’m in a clinical trial leading the pack to help scientists understand how the drugs I’m taking will impact patients long-term.

Friends well into their seventies seemed shocked recently when I mentioned the word “hospice” in connection with myself, a possibility not so remote for those with advanced cancer. They asked me how old I was. As if my relatively young age would immunize me from that space, considered by many to be reserved for the most elderly. A gentle response to educate them on the reality of my condition proved sufficient to assuage their curiosity.

In the end, we all go to the same metaphorical place in the cemetery. All that’s different is the route we take to get there. Some have incredibly good anti-ageing genes. Others, not so good. We should take the bad with the good, knowing that no one gets through this life alive.

It would be wonderful to be eighty and feel like sixty. I know some people like that. Good for them. But I can identify better with the Stage IV cancer troopers who live independently and weather their way through their routines, taking each day, each moment, at a time. Some days are better than others. Our memories just need to cling to those golden days like a favorite blanket worn thin over time. And we will do well to count the blessings we have and assist others where and while we can. It helps me to have faith in God’s goodness and promises of eternal life. Others hold on to promises of new generations in their family.

Any age I attain is enough for me. Sixty is the new Jan’s age. And that comforts me.

Do you ever feel as if you are older than you are in age? Do you ever feel younger?  When you feel older, what helps you cope?

 

Before Cancer and After Diagnosis (BC and AD)

  • Posted on February 6, 2014 at 2:44 pm

Scriptorium

The most widely used calendar in our world today, the Gregorian calendar, breaks down our timeline from before Christ or the Common Era (BC or BCE) to after Christ (in Latin, Anno Domini, or AD). I know for sure that the dividing line in my life has been advanced cancer, symbolized appropriately by the crab.

Last Sunday a beloved pastor delivered a message to our church putting that divide into divine perspective, but leaving me to ponder my circumstances. Battling colon cancer for four years with 70-plus cycles of chemo behind him, he was able to speak publicly for the first time after a long silence. A voice of experience. What resonated with me most about his message? It was hard for him to remember his life without stage IV cancer.

I can relate.

After almost a year and a half since my stage IV diagnosis, I can truly acknowledge the difficulty of recalling what life was like before a compassionate doctor delivered to me that earth-shattering news. In my former life I had been laid off from my previous job and was seeking employment, with no success. In retrospect, it was a blessing no one wanted to hire me. At the time, however, the rejections stung me worse each time, like a pesky mosquito never buzzing off. Looking back, I can see  I was blind.

But now I see.

Before the diagnosis I lived at the gym, skied almost every year, ran around the neighborhood, biked through parks along bubbling streams, and painted landscapes catching my fancy. I enjoyed a large variety of delicacies, with a hearty appetite for fine dining. I visited my primary care physician and oncologist once a year. No drugs. Travel was to beautiful places of my choosing. I opened jars and picked up items from the floor with the greatest of ease, without  a trapeze. I climbed up and down stairs as if twenty years younger. I even climbed a mountain or two. The only time I got nosebleeds was high up in the bleachers.

And then it hit.

When the rogue lymph node on my chest invaded my body, all hell broke loose. Pain racked most of my body. Medicines couldn’t touch it. When finally I got into a clinical trial and started to gain needed weight after surgeries and grueling hospital stays, I realized I had lost my previous life. Now I am a most picky eater due to a weak and sensitive stomach. Eating requires twice the amount of time to consume less than half the quantity of food. Daily nosebleeds plague me despite moisturizers everywhere. I get carsick without being in a car. I take narcotics and meds for side effects around the clock. I’m lucky if I get out to walk three times a week. Frozen shoulder has returned to haunt me after a long respite. Slumber is most welcome. I visit my oncologist every three weeks and receive nausea-inducing scans every four months. Travel to the hospital for these visits is not optional, and quite wearing. This is my new norm. As more time passes, those memories of a carefree life dissipate into oblivion.

And it’s okay.

Despite all the challenges, I forge ahead. I buy a smartphone adopting the motto of carpe diem. On the days when I feel really well, I write or play an instrument, play games and study the Bible with friends, or take a walk. On other days I veg in front of a flickering screen. A huge blessing is that I don’t mourn anymore for the old life. It was still filled with pain and suffering, just of a different kind. I didn’t appreciate the nuances of life as I do now. And I can relate better to those who struggle with chronic disease or aging, wondering why their bodies don’t respond the way they used to. I could never say, “I know what you mean” or “I know how you feel” to someone, because I can’t get into that person’s body or mind and understand his or her unique pain. But I can offer people a gentle hug and encouraging words, a listening ear, a warm smile and a hand over their hand.

The pastor who gave that message almost a week ago received a standing ovation. And that’s before he even spoke a single word. Witnessing that moving scene gave me extra courage to speak out about metastatic disease, to speak the truth, to avoid sugarcoating a crabby diagnosis. We go on.

Have you had a defining incident in your life that divided it into a before and after?

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