General

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?

Costs of Cancer Treatment: the elephant in the examining room

  • Posted on January 24, 2014 at 11:32 pm

bag_of_money

Just as oncologists don’t like to bring up intimacy issues or spiritual matters with their patients, these same doctors are not particularly eager to discuss financial aspects of treatment. A 2007 article in the Journal of Clinical Oncology presents the results of a survey conducted by the authors at Sloan Kettering. They conclude that miscommunication between doctor and patient is likely due to doctor reluctance to raise the subject.  I doubt the results would be any different some seven years later.

Let’s face it: financial planning is not a sexy topic for most of the doctor populace. In fact, I believe many patients would guess that if they brought up the issue, their oncologist would refer them to a specialized staff member. After all, oncologists are trained in the science of treating cancer, not socioeconomic predictors.  Add to this the limited time an oncologist can spend with a patient, and I see a perfect storm.

Still, treatment affordability looms particularly large among stage IV breast cancer patients like me. After receiving such a diagnosis–an off-the-charts shock to the body–we are told that our cancer is treatable, not curable (if our type of cancer is indeed treatable). And while the cancer may respond to drugs, we don’t immediately ask how much these miracle meds will cost us out-of-pocket. We have more urgent questions on our minds: survival odds, side effects, and range of options. Money matters end up as background noise, to be investigated later after the initial shock has worn off, and best left to the experts in the insurance industry and the financial gurus at the hospital.

Both the oncologists with whom I have interacted did not discuss my finances. The one who delivered the unwanted diagnosis told me if he had the resources, he would choose to drive the 430 miles round trip to get cutting-edge treatment at a leading hospital. He did not ask me if my insurance would cover that hospital or if I had resources to travel that far and that frequently. But he did give me the option of getting standard-of-care treatment at a local hospital.

Fortunately, I had the resources and friends in the area where the leading hospital is located. Fortunately, that hospital happened to be an in-network provider in my PPO and paid major costs after my deductible and maximum out-of-pocket costs were reached. Fortunately, I qualify for a clinical study where I get the drugs free of charge, although insurance picks up the costs of constant blood tests, regular and frequent scans, and nurses’ and doctor’s labor and supplies. Those are fortunate circumstances that come together for a trifecta in my case. But even this “trifecta” isn’t perfect as I struggle to continue with frequent and long drives, causing wear-and-tear on the body as well as the car.

The hope is that the Affordable Care Act will help with this financial gap, but it may not cover providers in major areas that offer expensive care and clinical trials that local hospitals can’t. Time will tell if stage IV cancer patients will benefit in general from the new law.

In the meantime, resources exist to help those who are drained and stressed out by financial trauma, such as:

Patients deserve to have their financial concerns addressed. It’s stressful enough to get a cancer diagnosis, without adding money matters to the mix. As more doctors become aware of this issue, I believe change will happen. As with most things, it starts with education.

If you or a loved one has had cancer, did the oncologist(s) address the financial aspects of treatment with you? If so, what did they recommend?

Joy to the World

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

new-year-2014-free-printable

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?

 

One-year Cancerversary!

  • Posted on November 1, 2013 at 1:11 pm
Dad and Mom during World War II

Dad and Mom during World War II

It was a year ago that I received the news that no person, whether with a breast cancer history or not, wishes to receive. Oh, I knew it was coming. One of my best friends took a day off work to be with me as I drove to my oncologist’s office for the dreaded appointment. I knew I would need emotional support. And when I saw the oncology nurse enter the examination room before the doctor did, ominously bearing a prayer shawl, I really knew my number was up.

All the warning signs were there: vomiting right after I received some great news about the sale of a house, persistent flu-like symptoms, unbearable left chest discomfort, insomnia, pain too severe to allow me to go to church, near fainting during choir rehearsal, terrible lower back pain when I sat down, and uncharacteristic shortness of breath that prevented me from walking around a beloved lake on a beautiful October day.

This is someone who had perfect attendance for four years of high school and hardly ever got colds, except when her children were small. This was a working mother who ran throughout her thirties and religiously exercised at a fitness club for almost two decades. The bubble of denial in which I encased myself, as a lady who thought she had beaten her cancer, was about to burst. So much for the well-meaning advice of others that God had cured me and I need never worry again about breast cancer. Those words probably comforted the speaker more than they reassured me.

I appreciated the oncologist’s honesty, but also his compassion. He told me the liquid in the pleural effusion (my lung sac) was malignant, with a Halloweeny pathology of HER-2 positivity. For the uninitiated, this is an aggressive type of cancer. But the good news, which the doctor was quick to point out, was that this type of cancer is treatable, though not curable. I could go to Stanford to see if I qualified for a state-0f-the-art clinical trial to treat cancers such as mine, or stay locally and get the standard treatment. I chose the cutting-edge option, intrigued by the idea of a clinical trial that could help others as well as myself, plus happy to know that the manufacturer, Genentech–not my insurance company and myself–would pay for the wonderful, but expensive, targeted therapy (Kadcyla and Perjeta) involved.

It’s been quite the road trip since that life-changing day a year ago as I staggered out of the oncologist’s exam room and into my car, with a written prescription for narcotics and a fresh appointment for a PET scan involving inserting a dye into my fragile veins. Yes, I dreaded the dyes. But I dreaded even more the prospect of discovering just how much and where the cancer had damaged my body. Frankly, the “scanxiety” frightened me out of my October gourd. The thought of entering a clinical trial also scared me, but it seemed more like an adventure than a repeat of the drill to which I was accustomed.

I’ve grown a lot in a year. I’ve learned first-hand the intense worry and then overwhelming relief when someone gets tested and then qualifies for a clinical trial. I know now what it’s like to stay in a hospital five days in a harrowing whirl of tests and narcotics. At least I had a private room with a view, thanks to my condition being labeled “acute”. I understand now what it’s like to be wheeled into the infusion room, with a bucket in my lap where I fully expected to vomit any minute from narcotics. I experienced the adventure of drugs coursing through my veins, attacking the cancer cells with a vengeance, but leaving side effects that literally chilled me to the bone. I learned the meaning of friendship as I, a skeletal shadow of my former healthy frame, stayed with a dear friend who cared for me for three months while I underwent the first phase of this drama. While it has not been easy making these oh-so-frequent trips back and forth to the treatment center, I’ve learned to make the best of it. After all, my life depends on it. Literally.

Oncology nurses vary as much in their personalities as in their skills. Some just seem to know when I need a bit more compassion. Some aren’t paying attention to clinical protocol, while others stick to the rules like an army sergeant with a large platoon. Some are what I would call an officer and a gentlewoman, exuding a reassuring mix of rules and bedside manner. Some are better than others in poking my port to access the veins and in removing the apparatus. Twice I’ve heard the strains of “Hey La, Hey La, You’re Chemo’s Done” to the tune of “My Boyfriend’s Back.” The nurses enjoy doing their choreographed version of this routine to lucky patients who will soon be walking away from all these infusion recliners and hanging bags of toxins, presumably forever. I’ll never get to witness that song and dance for myself unless the chemo isn’t working anymore. I think I’ll pass. Still I smile on. It doesn’t matter which nurse I get or which song is sung, whether a dirge or a number from a beloved musical. I’m alive! And I’m not on a deathbed.

The adventure continues as I struggle with side effects that linger on despite the arsenal of drugs I take and the walks I make. I’m such a picky eater now, and hardly ever finish my meals, as I slowly work my way through mostly unappetizing cuisine. Acupuncture doesn’t seem to do much, nor does healing touch. But social interaction is the best alternative medicine I’ve found to date.

Yesterday my dermatologist informed me that a black spot I’ve had on my face for months that I thought surely was melanoma was nothing more than a blackhead. My pain threshold is so high that I hardly flinched as she applied a pin to it and pried it off with some prodding and poking. I was just thrilled it was not another form of cancer. In a few weeks I undergo a colonoscopy, something I wouldn’t normally look forward to. But if I were headed for hospice anytime soon, my oncologist would not have recommended it. And I will clearly benefit from the new U.S. law banning insurance companies from taking pre-existing conditions into consideration as they determine premiums. Any financial break at all is a break for someone like me on limited income.

My beloved mother would have turned 92 yesterday if she were still alive. She would have been proud of how I have coped. And my Dad? I get my strength from him, as well as my heavenly Father. When my Mom and Dad were going to a restaurant, he in a wheelchair due to his amputated leg and my Mom leaning on her cane weakened by terminal lung cancer, someone asked my Dad why he and his wife were still bothering to go out for a meal. He curtly replied, “Well, I’m not just going to give up, am I?”

After a valiant struggle with recurrent infections, my Dad finally died six years ago. But his words still linger in my mind. I’m not just giving up, either. I intend to do another blog post next year on my two-year cancerversary, with equal stubbornness and verve as I have now.

Dad would want it no other way.

Keep the Balm and Carry On

  • Posted on October 23, 2013 at 4:45 pm
Josh and Jan at his wedding

Josh and Jan at his wedding

I’ve been remiss in writing for some time. Would that I could go back to the days of yore and post regularly about day trips as a woman who thought of breast cancer as part of her history.  Unfortunately, my day trips these days are the kind that keep cancer at bay. I call them life-sustaining day (LSD) trips.

But after a year “playing” at this new normal, I would not have it otherwise. My gratitude journal is chock full of things that happen during each day that make life worth living. Things like automatic weight control, energy sufficient to wash a car, a 30-minute walk around a lake, phone calls and social networking from people who care, monthly lunches of our Fab Four group, safe journeys to and from the center for my drugs of choice, etc. And the etc. is BIG.

What does everyday life look like for someone like me? I get a very good night sleep every night, maybe partly due to the anti-anxiety pill I take, but don’t tell anyone. People tell me I look healthier and healthier every time they see me. Strangers view me as able-bodied and even as someone who still works. I work, but not at the job they would expect me to blabber about. I work at the job of staying independent as long as possible. Taking daily walks when the weather is good helps me out. Eating snacks in between meals works great for loss of appetite. Those with whom I share a meal are accustomed to my slow eating. Some foods and drinks I once fancied now repulse me as they did when I was pregnant. Coffee is one of those; it irritates my stomach and creates nausea. That’s enough to switch me to tea. I’d rather switch than fight. Adjusting to small losses gets me accustomed to the inevitable process of ageing.

Everyday life also involves taking medication regularly to stave off pain and other side effects, keeping nails well clipped, filed and strengthen-polished to avoid nasty splits and snags. I also research health insurance information to see if I qualify for a plan that won’t cost me an arm and a leg because I’m in a high-risk, pre-existing condition pool. Anything would be cheaper, but I still must make sure any plan I choose will include the most important provider in my network, the one that administers my clinical trial drugs. Without that assurance, I can’t afford reducing my premium. Such is the financial life of a rural stage IV American patient in a clinical trial unless work provides a nice plan or the person is independently wealthy or reaches Medicare age.

But life goes on, and it is breathtakingly beautiful. I’m still able to fly, at least domestically. My son’s wedding last month became a highlight, representing young love and the potential of a new generation, something every mother longs to witness. Especially if the woman he marries is a total gem. The only challenge is living so distant from them. I can’t move very far, as I am tethered to my hospital where life-giving drugs reside.

This outpouring of gratitude is not meant to be glib. I have bad days, too. But doesn’t everyone? Sometimes my back aches despite oxycontin and oxycodone. Sometimes my body is as stiff as a starched, port-accessible shirt. Sometimes I whine. And sometimes I cry over losses that seem overwhelming. But my faith permeates all that I do, and I rely on prayer to calm these fragile nerves and their not-so-happy endings.

Many people with advanced breast cancer in my online discussion groups are living proof that this can be a chronic disease, not an ominous death sentence. They are still kicking five years out from their diagnosis, switching to a new protocol when the previous one proves ineffective.  They live long enough to see another generation of drugs hit the hospital pharmacies. Approximately 155,000 Americans live with stage IV breast cancer these days. My doctors treat me as if I will live a long time, concerned about my heart and about skin and colon cancer. They wouldn’t bother if they thought I was about to enter hospice.

The dream of all caring people around the world is to find the cure for cancers that currently have no cure. Some thought I was cured after five years from my initial diagnosis of early-stage breast cancer. I wish that had been true. But seven years from diagnosis it recurred, and then again eight years later. Breast cancer consists of many subtypes of disease, with no one-fits-all sizes. Researchers realize this and analyze tissue samples from various patients to predict who is genetically disposed to respond best. I know the clinical researchers in my case are studying my tissue to determine why I am doing so well and using those results to determine which earlier-stage patients will benefit from the same combination of drugs. The fact that my case is being studied so closely is very reassuring to me, making me feel as though I am helping future generations to stave off this scourge, to allow grandparents to see grandchildren, parents to see their children, whether for the first time or as they grow up.

Denmark is the happiest country on earth, according to the latest studies. The U.S. lags far behind. Also, older, retired adults tend to be happier than younger ones. I’m hoping I can add a bit of happiness to our culture so others can revel in the here-and-now and not suffer angst from envy, strife, impatience, office politics, lack of trust in institutions, long hours, financial uncertainty, and worry about the future. Grasp the moment. Take joy in the changing colors of the season. Study what Danish citizens savor that we don’t. Focus that camera on a detail of nature that particularly moves you or normally gets overlooked. You won’t be sorry.

Keep the balm and carry on!

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