Radiation oncology – progress

  • March 16, 2015 at 6:48 pm in

Since November 2014 I’ve been treated for cancer that has spread to my brain. The brain MRI revealed four spots, one of which was too small to treat. The fourth spot was radiated in February when it grew a bit.

Today’s gold standard for treating one to four metastatic lesions in the brain is stereotactic radiosurgery, SRS, which is what I received. Despite its name, it is not surgery. But it is targeted, just as my chemotherapy is targeted to kill the cancer cells in the rest of my body. Whole-brain radiation has far more side effects than SRS. Would I want my body to outlive my brain?  Not if I can help it. It may be in this case that the cure (causing dementia) is worse than the disease.

When I entered the exam room for my first consult about SRS, the nurse told me I would bear permanent tattoos on my skull and lose some hair as a result of this procedure. My hair was already thinning from all the maintenance chemo, so to have marks on some balding spots in my head would add insult to injury. I didn’t even have a choice of tat designs that would fit my personality, attitude and wardrobe. Could my appearance get any worse?

But the SRS room proved not to be a tattoo parlor. I was not joining the Navy or a new gang. Instead, the technicians placed my head in a mask fastened to a flat bed so that it would be immobilized. The mask was thermoplastically fitted to the unique features of my face and head. Before the beams hit my head the technicians marked up the mask with color-coded magic markers to pinpoint where the radiosurgery would take place.

Radiation face mask

Radiation face mask

When I found out the markers on the mask would substitute for the tattoos (and I wouldn’t even need to undress and don a hospital gown), I was ecstatic. “Bring it on”, I wanted to shout to anyone who would listen through the thick walls. Who needs additional “scars” beyond what I already had. The technician warned me I would smell the markers, but I didn’t even mind that. Not so long ago, I would have despised the smell, reminiscent of business meetings where speakers used Sharpies on whiteboards to make their point. I often wondered if that smell would contribute to my cancer. But I’ve inhaled so many toxic chemicals over my lifetime that it doesn’t bother me anymore. I am beyond the point of caring about environmental factors.

I’ll get the results soon from the brain MRI scan I had last week. I’m hoping and praying it shows shrinkage of all four lesions since the last scan and reveals no new cancer cells lurking like stalkers on Facebook. If there is new cancer, I’ll unfriend and block it with more SRS magic.

Regardless of the results, I will hang up my mask, like a tribal relic, marking another era in my quest for remission. Hope is foremost in my brain, and faith resides in the brain stem. Now I just need a strong spine to hold it all up. Friends make all the difference, and I’m grateful for all the research that makes imaging and subsequent treatment like SDS so cutting edge.

Life and Death with Stage IV Cancer: Losing another of our blogging community

  • March 7, 2015 at 4:04 pm in

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Like me, Lisa Bonchek-Adams was a stage IV breast cancer patient. She died Friday, March 6, 2015, of her disease. Lisa requested that any donations in her memory be made to her fund for breast cancer research at Memorial Sloan Kettering Cancer Center.

Lisa’s demise threw me for a loop. It saddens me in so many ways, most of all because she was a fellow blogger who didn’t mince words about her life under and after treatment. She was bold in her writing and met her challenges with aplomb and spunk.

I wish I could speak out the way she did, influencing thousands of people across the globe. Due to radiation and the accumulation of toxic chemo assaults, I haven’t the energy nor finger dexterity to write a blog post even once a month. The chemo has taken its toll on my typing skills as well as my endurance to sit at a computer for more than 30 minutes at a time.

But Lisa, compassionate above all else, wanted her readers to know the details of her day-to-day challenges. We have all learned from her experiences, whether virtual or in person. I am glad she was surrounded by her family at the end. There is nothing more comforting than knowing that loved ones are there to hold us as we breathe our last.

Now that the cancer has spread to my brain, I am less optimistic about my overall survival time. I want to plan for travel and entertainment while I am still able, yet I am not sure what the future holds. At least medicine, even in the stage IV setting, has advanced in the past few years. It isn’t progressing as fast as breast cancer advocates would like,  but it helps to know, for example, that the gold standard for treating brain metastasis has changed due to ongoing clinical trials and meta-analyses. Knowing this has encouraged me as I look back on the stereotactic radiosurgery that I recently received. And if I live long enough, more advances will change the landscape further. The best organization that pushes for more stage IV cancer research is METAvivor, an organization dedicated to those who are beyond the “pink” stage in their diagnosis.

In the meantime, my faith keeps me strong and focused, and I rely on God to sustain me even as I walk through the shadow of the Valley of Death. We will all reach that Valley; it’s just a matter of time.

Lisa, we will miss you and your words of wisdom. We cherish the memories of your incredible blog posts and interviews with the press. If anyone has had influence on the medical community of breast cancer, it is you. Rest in peace, dear one.

Divine Appointments: Let me count the scans

  • February 23, 2015 at 5:52 pm in

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When you ask a metastatic breast cancer patient what is the most troubling aspect of his or her current life,  the answer might surprise you. Fear, pain, worry or anxiety about the future and thoughts of hospice care may not be foremost in the patient’s mind. Front and center might well instead be those pesky doctor appointments, blood draws, and recurrent scans that could make the patient pare down her bucket list to a single item: “read interesting articles in the waiting room.” I now have two oncologists (medical and radiology) as well as a cardiologist. Imaging of various body parts is done every three months. Techs with syringes puncture my one available arm on a regular basis.

I also still see my primary care physician, dermatologist, eye doctor and dentist for the usual checkups.

But due to one single seizure caused likely by brain mets, I can’t drive to any of these appointments. And my family doctor, dermatologist, vision specialist and dentist all want to see me several times a year now instead of just once annually. Now that I am not as healthy and can’t drive, they want to extend my pain by multiplying my exam room time. Are these more frequent visits designed to make the medical profession extra money, or are they truly reflective of the increased likelihood of my developing skin cancer, vision impairments, dental disasters, and immune suppression?

I am young enough that I don’t come with many comorbidities. I had perfect health throughout my twenties and thirties. Is this now the future I face? Social workers with resources I have known about for some time? Nutritionists who taught me how to gain weight but are silent when I want to lose a few pounds like most other Americans?

Maybe I should take a step back and be grateful that medicine has advanced to the point where no one is directing me to home health care and hospice at this point. It’s just that I don’t always like to be reminded constantly that I have cancer, even when I don’t have side effects from chemo. Lymphedema reminds me enough of the cancer. I don’t relish being compared to seniors in their late eighties who require Meals on Wheels or assisted living. There is no comparison of my current condition to that of frail, elderly folks.

How can I tackle my bucket list when my tacklebox is full of appointments and not the tantalizing bait this world has to offer? Well, for one thing, I hope to be able to travel once my driver’s license is restored. Maybe I’ll have a free week before a doctor beckons me back for one more test. In those precious seven days I hope to enjoy as many adventures as my health and energy levels allow. I’ll stay clear of hospitals and medical centers if at all possible, unless I fall in love with an eligible doctor. And the likelihood of that? Well, let’s just say I’m more than satisfied right now–and thankful to God, my constant companion–for the quality of life I enjoy between medical visits.

Maybe I’ll have to revisit these appointments, envisioning them as divine opportunities to reach out and comfort others, to pay it forward. That would be the real blessing to bestow as a consequence of oh-so-tentative remission.

Cancer’s Isolation

  • January 21, 2015 at 4:57 pm in

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

  • December 27, 2014 at 8:54 pm in

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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

  • October 17, 2014 at 2:52 pm in
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?

  • April 26, 2014 at 3:41 pm in

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

  • April 17, 2014 at 12:27 pm in

 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

  • April 12, 2014 at 12:55 pm in

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

  • March 30, 2014 at 10:39 pm in

 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?

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