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Elizabeth Edwards and Her Daughter — The Cared-For and the Caregiver

  • Posted on May 13, 2015 at 1:50 pm

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An insightful interview of a loving daughter taking care of her mother during her last days with advanced breast cancer moved me to tears. While this article deals with celebrities (the politically powerful Edwards family), I think we can all relate at some level. My own mother died of advanced lung cancer over ten years ago. But it seems like yesterday. I certainly can identify with Cate Edwards’ feelings of guilt and regret in not moving to her mother Elizabeth’s home so she could take care of her personally. I can admit along with Cate that I did not broach with my mother the emotional issues surrounding her cancer.  She lived on the East Coast while I lived in California, and she had no computer. We communicated only by phone, except on those few occasions when I would fly to be near her. Those visits always seemed too short. Every time I left I got the sense that I would not see her alive again.

Now that I have advanced breast cancer, I can relate to my mother’s plight on a deeper level. Now that she is gone, however, I cannot share with her what insights I have gained. I can only hope that my caregivers will be as compassionate as Cate was to her mother, that they will not live with lingering regrets or guilt. Just staying in communication is important. In this age of social media, I believe we are so much better connected than we were just a decade ago.

May we all show compassion as we tend to the needs of others. We won’t regret it. We will feel honored by the privilege of having known the person with the illness. We will treasure our memories of good times and will have learned more about peace and reconciliation through grief and death.

Dylan Thomas wrote in part,

“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.”
Dylan Thomas, Do Not Go Gentle Into That Good Night

I say,

“Go as gently as desired into that good night,
Whether old or before your time;
As peace and acceptance loom,
Embrace as you must the dying light.

Gratitude grows for souls who care,
As life nears its extinguishment,
Like a moth heading to its flame.”

My apologies to Dylan Thomas for modifying his famous quote, but I do appreciate his sentiments. I just want others to know they don’t have to rage against the inevitable if they desire otherwise. Many are called to do so, for example, to advocate for better and more thorough research into metastatic disease. But if that is not your calling, don’t despair. Simply seek the kind of caregiving that Cate offered her mother: unconditional love.

 

Living in Uncertainty – far from the madding crowd

  • Posted on May 8, 2015 at 1:02 pm

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Without knowing the best treatment, how can we be sure we maximize our lifespan, with the best quality of life?

Easy answer. We can’t.

As medical research advances, we may well be able to receive our own individualized protocol based on our DNA profiles. But that is well beyond my lifetime.

In the meantime we must simply make decisions based on all the data out there and on what we decide we can tolerate. In my case it’s still not clear whether a combination of cutting-edge drugs will lengthen my life more than just a single agent. Am I willing to drive a long distance to gain access to the combo under a clinical trial regimen? Or do I want to keep getting treated with the one drug at a facility close to home?

Would I be better off going to a top-notch medical facility four hours away for brain imaging and treatments when I may be able to get similar treatments at a local cancer center? Would more precise imaging and more cutting-edge treatment tip the scales to the point at which the longer travel and hotel stays are worth the time and trouble?

These are the questions I face with my particular brand of advanced breast cancer. Others face different questions that may involve reducing dosages due to debilitating side effects or changing medicines because first-line therapy no longer keeps the cancer at bay.

How do we deal with uncertainty? We cope in different ways. Counseling or support groups may help some. Prayer might help others. Friends and family can lend unique support that appeals to many. Life doesn’t come with guarantees, so uncertainty necessarily intersects with the trajectory called living. We do what we can with what is within our control. Then we just live with risks and cling to hope. Cure magazine (curetoday.com) recently featured a blog post on the waiting game no one wants to play .

I feel sometimes as if I were far from the madding crowd. But the truth is that we are all part of that crowd. We all struggle with some issue that is beyond our control and need to make educated guesses as to how we can best adapt to the unknown. Just realizing we are part of the crowd–part of the flash mob–is somehow comforting and uplifting. We are not alone, not in our cancer or in any other challenge.

I will get answers to my questions, even if time alone makes the decisions for me. Since life is uncertain, I’ll eat dessert first and ask questions later.

 

 

Stereotactic radiosurgery complete – no iZombies yet!

  • Posted on April 27, 2015 at 1:00 pm

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What a relief to have this latest round of radiotherapy complete! The ordeal entailed five days of treatment, but only lasted about 7 minutes each day. The brain MRI imaging is detecting one treatable spot at a time. I fear that SRS is in my future for a while, targeting the lasers to each tiny spot.

After resting for several days I am eager to venture beyond these four walls to a beautiful outdoor setting. The indoor activities proved productive while I was on steroids. I was content to organize closets and make a nice stew from freezer leftovers while the weather was a bit cooler. I’ll end up storing much of the tasty soup snugly in ZipLock bags, but even so, the freezer will benefit from the remodeling.

Today I took my first steps and walked to the end of the block and back. Though my gait was as slow as someone 10 years older, I made it. I also spruced up a few items around the outside of the house to create a different and more appealing view.

Next steps are a doctor follow-up, another brain MRI in 5-6 weeks, and then a possible second opinion from Stanford Medical Center. Here is where SRS becomes more of an art than a science. Many judgment calls need to be made based on my individual profile. Getting down to Stanford for consultation, even without a driver’s license, can be managed, but several roundtrips involving imaging and possible treatment of many small spots at a time is more logistically problematic. The value of second opinions, especially involving cancer, however, should not be dismissed outright. Each patient must decide on the merits and on personal considerations.

My main concern is to get this brain spread under control so I can plan my normal life better: bucket lists and traveling for pleasure to see friends and relatives or exotic sights on my own. That would be paradise for me. We shall see where this ends up, but I am always hopeful, even with my realism intact. Sometimes we just have to cling to the things that appeal to us the most and go from there.

iZombies can hold off on their zeal for the macabre. My brain is not part of any cadaver, and I hope to do more activities to reduce dementia risk to keep it that way: exercise, brain teasers, diet, social engagements, etc. I intend to quiz my doctor on these very factors, and more. Who says we can’t be brainy even as we age? Millions of Baby Boomers join Medicare each year. We represent a powerful voice and we will be heard, even those like me with metastatic breast cancer. Never underestimate our stamina and advocacy focus!

 

Caveat:  The Web sites to which I link in this blog are only representative of what is out there. Always ask your doctor if you have any medical concerns and don’t rely on the Web for everything. It is not always updated or reliable.

Metastatic Chiller: Coming to a Theater Near Me?

  • Posted on April 7, 2015 at 5:12 pm

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The morning before Easter a beloved young pastor from my church succombed to metastatic cancer.  Holding the disease at bay for several years, he obtained treatments at top-notch medical facilities and checked into many possibilities for cutting-edge clinical trials. But finally, having exhausted all options, he let hospice into his home to attend to his final needs. He left behind his beautiful, devoted family. This scenario has played out all too often with some of my metastatic breast cancer blogger friends.

Sometimes life just doesn’t cooperate with our wishes.

My breast cancer has spread to my brain. In the initial MRI it appeared as three little spots. Each subsequent MRI has revealed a new single spot. So far, the radiation oncologist can use stereotactic radiosurgery (SRS) to treat each new lesion. But if the lesions don’t stop soon, I’ll be facing whole-brain radiation. The latter, considered “old-school” technology, is likely, among other nasty side-effects, to damage short-term memory, causing dementia. No one knows for sure how this will play out for me in the end.

When I was first diagnosed with Stage IV breast cancer, I thought the malignant cells would invade my liver or lungs after lodging in the bones. I never thought those cells would cross the blood-brain barrier, a scary prospect if ever there was one.

What my pastor and I shared in common besides advanced cancer is faith and hope in God. We knew the Lord works in mysterious ways and we eventually accepted that concept, even as we kicked and screamed at the unfairness of it all.

The pastor’s passing makes me wonder if this metastatic evil they call cancer will bring unwelcome news to a cineplex that is me. The marquee might read: NIGHTMARE ON JAN STREET III. It would be the third movie in a trilogy of recurrences. But post-Easter I know there is resurrection of the body and so I can rejoice that there is hope in the afterlife. Not all would agree with me on this point. But if I am going to star in this movie, looking ten years older than my real age, I want to have some say in the script. And I say that I will wrestle with this disease as long as I can, doing everything in my power and wallet to postpone it. To gain time to benefit from more medical advances. To see grandchildren. There is a lot to be said for holding on to the VHS tape of “Heaven Can Wait.”

But when the expected sayonara movie does come to my cellular neighborhood, to my body in Technicolor, I will be prepared. I will be at peace knowing that I did everything I could, that many people prayed for me with wonderful results, and that I will be soon in my eternal home, painting acrylic scenes and playing ukulele on a cloud with my Savior and Redeemer. The real marquee? SEE YOU AT HEAVEN.

Hope abounds. Prayers matter. Heaven awaits.

Radiation oncology – progress

  • Posted on March 16, 2015 at 6:48 pm

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

  • Posted on March 7, 2015 at 4:04 pm

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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

  • Posted on February 23, 2015 at 5:52 pm

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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

  • 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
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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.

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