- Posted on May 30, 2016 at 5:40 pm
Last Saturday I attended a wedding of a delightful couple who will start their marriage full of hope and promise. And for me who observed the ceremony I have not felt this good since my stage IV breast cancer reared its ugly head almost four years ago and I found out what “stage left” really meant. I would have danced if my partner were up to it and the hours unlimited. But, alas, the bewitching hour of opportunity came and went and we had to go bef0re the real party began. Also, pressing my luck by kicking up a storm after a major surgical operation might not be the best move I could make on the waxed floors after 10 pm.
Maybe a next time will pop up when I can twirl my skirts and twist my hips, even if only to the tunes of “YMCA” and “Happy” and “Celebration”. It just feels good to be alive and well enough to enjoy the festivities. Who knows how long any of us have. Living dangerously means something different to each of us. But for me it just means living life to its fullest, for as long as I can, with a bucket list of goodies stuffed into my favor bag for good measure.
- Posted on September 25, 2015 at 8:36 pm
As a continuing contestant on the waiting game, I find myself drifting into various states of consciousness. One of my most important conscious efforts is to maintain social connections. Most people would be intimidated by all the lunches, movie gatherings, game nights and Starbucks encounters inked into my planner. Not being able to drive due to a second seizure did not put a damper on my drive to reach out to people. Friends from expected–and unexpected–locales emerge from their homes ready and willing to pick me up and whisk me to myriad places that deliberately exclude blood draw labs and chemo infusion chairs.
Earlier this month I attended a lymphedema conference in San Francisco. I never would have been able to attend if it weren’t for a friend who drove long-distance to pick me up, take me there, and bring me home. We spent a glorious four nights together as roomies, whispering into the wee hours as if we were sorority sisters. Seeing Union Square again and dining in fine establishments were neither taboo nor tabled, despite the condition of my brain. Or maybe because of it. One never knows the effect of steroids (which have been part of my treatment since August) on the human psyche.
Reaching out to others involves shedding protective shells and falling into the arms of loving friends not afraid to hug or carry groceries. Blessings multiply as I marvel at the mystery of having little pain or fatigue as I weather through steroid tapering and the insomnia it sometimes brings. Au contraire. I love the fact that I can change into a colorful top and sport flashy jewelry at almost a moment’s notice. A friend’s impromptu invitation the other day to go out in 20 minutes to a pizza fundraiser got me applying lipstick in record time. Slipping into some sassy but comfy shoes, I waited in wild anticipation for my friend’s arrival in her sporty new Toyota Forenza.
Peeking into October, I can see already the reflection of Lake Tahoe as preparations are made for a women’s church retreat. Anticipation grows as I imagine the new friendships I’ll forge. I can already envision the cabins, take in the scent of the aromatic pines, and bask in the free time and games we’ll enjoy as we savor the shorter autumn days and God’s rich provision. The adventures await as I dare to participate.
The day of the scan in November–and the results of that scan–will come soon enough. In the meantime I will enjoy the warmth of the laughter of friendship and simple fun.
- Posted on July 5, 2015 at 7:53 pm
We baby boomers can be persnickety. We retain our rights to be downright rebellious, even as we enter our sixties and seventies defying ageing. I’m no different. It took a long time and a good-paying job with lots of benefits to reverse bad cosmetic genes: removing two birthmarks, implanting four teeth so they would look real, removing several mercury fillings, and dying hair every six weeks to disguise premature gray.
Just as I started to revel in the new me, I noticed dozens of facial wrinkles and crinkles marring my near-youthful appearance during my two remissions from cancer: laugh lines, crows’ feet like the ones at the beginning of Jurassic World, and frown and worry lines. I’m sure many had to do with raising three boys, but ageing and genetics take their toll.
Was I about to embark on a Botox expedition, or chemical peels, laser treatments and other secrets short of face-lifting to boost my self-esteem?
As I weighed the pros and cons, stage IV cancer cells invaded my Woodstock peace of mind and made the decision for me. I now found myself fighting for my life. I set a bonfire to my vanities.
The double mastectomy without reconstruction already made me look the freak, along with wearing a lymphedema sleeve on my left arm to keep swelling down. Now I bear a port in my collar area and sport a huge scar above my waist where a catheter was used to remove fluid from around my lung. Continuous chemo makes my nose and left eye drip continuously. Dry mouth causes my mouth to pucker with extra wrinkles. Maintenance chemo leads to broken and split nails and invites infection, putting a damper on all manicures. Imbalance due to chemo and brain radiation causes my gait to be unsteady at times. I let my hair go white as I did not want any further chemicals brushed next to my skull. It was either go white or wear a head covering.
So when I tell people I’m on Medicare, many of them assume I’ve been on it for years, when in fact I am three years shy of the official qualifying age. When I have to reveal the age of my sons, well-meaning folks express surprise that my sons are not older. This is not what baby boomers want to hear. They like the compliment that they look too young to have a 30-year-old child or to collect social security.
The white hair and wrinkles, as well as the collective toll of chemo and radiation on my body, and my usual lack of appetite and energy, are probably the key factors in making me look at least ten years older than my real age. And so I grieve the loss.
Yet can I complain? Here I am, still living as a Stage IV cancer patient with brain metastasis after almost 3 years since diagnosis. Many patients with my condition call themselves cancer lifers rather than cancer survivors. This lifer label helps me accept that maybe I wasn’t meant to look or feel my natural age, that I may never have the energy and freedom to travel to exotic places as do many of my baby boomer compatriots. Kudos to them as they extend their lives well beyond those of their forebears.
I am as young as I feel. At least I can walk, see, hear, recognize people, and live independently so far. My weight is under control on the chemo diet. When I have a bad day I rest a lot. When I have a good day and am about to do the town, I dress up, accessorize, put on makeup, and try to feel my best.
One way to look my best is to laugh. While laughing does create those facial lines over time, it is worth it. Merriment is great medicine, a face lift if ever there was one. And if the seniors who truly are elderly and the seniors who are my age do mistake me for someone quite older, I can use that as a compliment to mean that I am also wiser. Wisdom is the best age-defying serum of all time.
Am I being rebellious? Yes, against my own generation. Against the Ponce de Leons always looking for the fountain of youth and wondering why it can be elusive to some people and within grasp of others. The times may be a’changin’, but it’s all good when serious research generates more personalized medicine to extend lives such as mine. The answers aren’t just blowin’ in the wind.
- 13 Comments on Woodstock? Not So Much.
- Posted on June 1, 2015 at 11:05 pm
After my clinical trial stint at Stanford Medical Center ended abruptly last fall when a seizure caused by cancer metastasis brought me down, I was disappointed.
Yet I was also relieved.
We cancer patients are a study in contradictions. No simple answers are ripe for the picking.
On the one hand I would be spared the long drive to Stanford for chemo treatments. Brain metastasis meant radiation close to home, at least for the immediate future. On the other hand, I would miss the state-of-the-art clinical trial with two free drugs that Stanford and the drug sponsor Genentech offered me. But the fact that the newest drugs did not prevent the cancer from crossing the blood-brain barrier was not lost on me. Maybe getting the single, most effective drug without the oppressive clinical trial protocol rules was just as good.
Comparing the two hospital facilities is like comparing Macintoshes to GrapeNuts. Stanford provided to the reclining patient not only a bolus of drugs with a warm blanket or two and a private TV and WiFi (which I get now as well). They also brought in a harpist or guitarist for our listening pleasure, and easy craft projects for our amusement. They also offered free reiki sessions and massages to those patients waiting for doctor appointments. It was a one-way, first-class ticket from New York to Paris.
But the cancer center of the rural 350-bed hospital I now frequent has free parking right next to the facility, eliminating the need to get validation for a parking structure some distance from the Stanford center. No traffic jams hamper my current route to and from the rural center.
On the flip side, however, the rural center, unlike Stanford, offers no world-class shopping (retail therapy) or international cuisine nearby. I also miss the great cafeterias at the Stanford Hospital and Clinics and the regular visits I made to my son at his metropolitan workplace on the way back home.
The rural hospital does have a massage therapist for patients being infused, but she is not present every time I go in. I once heard a ukulele player, whom I appreciate very much because I also play. But that was only once. Sometimes the nurses call me in earlier than my scheduled appointment, which would be unheard of at busy Stanford. But the treatment room at the rural hospital is much smaller and there are no private rooms with beds as there are at Stanford.
The relaxed atmosphere at the rural hospital, with no wrist bands to wear, may seem less regimented, but sometimes strikes me as lax. One day, the nurse didn’t check my blood pressure before I left, a vital sign that should not be neglected. And the nurse doesn’t always show me the infusion bag that he or she is putting on my i.v. pole. Stanford always acted professionally regarding those issues. But at least the rural RNs ask for name and birthdate and usually have another nurse check to make sure the label on the drug being dripped into my port is correct.
The amount of time I spent at Stanford was usually most of the day, including blood draw, doctor visit and infusion of two drugs, and sometimes three when Zometa was ordered to strengthen my bones. In contrast, my time at the rural hospital is shortened because the doctor visit and blood draw are on separate days. I like having my blood taken on the same day as the infusion because the RNs can use my port instead of my arm; the downside is waiting 45 minutes for the results to come in before I am released to the infusion room.
Now when I get the blood drawn from my arm a few days before infusion, the results are already at the hospital when I arrive and the nurse is ready to access my port. I also like the idea that now I can get lidocaine for the pain of accessing the port; I don’t think that was an option at Stanford. In addition, CT/PET scans can be done less frequently now that I am off the clinical trial. When I was on it, I had to keep track of the weeks in between and do my own scheduling of the tests. The tests had to be coordinated to be conducted the day before treatment so I wouldn’t have to make separate 400-mile round trips.
In conclusion, each cancer center has its advantages and disadvantages.The volunteers at both facilities hand out free drinks and snacks and can even go to the cafeteria to grab a lunch for me at my request. If I hadn’t had the spread of cancer to the brain, I would have stayed on the clinical trial at Stanford as long as the cancer was kept at bay. I loved my oncologist there, and she still asks about me and uses me as a model case study for the effectiveness of the new drugs. The Stanford nurses’ care for me showed in their kind faces and in their memories of my ordeal. The clinical trial coordinator asked me to speak as the only breast cancer representative on a patient panel at Stanford in April, 2014.
But given that the brain mets have occurred, I have become accustomed to not having to commute far, to not having to wait long in outer rooms for doctor and infusion appointments, and to having a stress-free parking situation. The patients at the rural facility may be friendlier in general because it is a small town. But in a world-class facility like Stanford, I give patients lots of slack when it comes to friendliness. People come there from all over the world presenting with many types and stages of cancer and being in many dire circumstances. I myself came there initially because I was close to dying. We do what we feel we must.
Boonies or Munis?
In My Fair Lady Rex Harrison reflects on his protege:
I’ve grown accustomed to her face…
Her smiles, her frowns
Her ups, her downs
Are second nature to me now
Like breathing out, breathing in
I was serenely independent and content before we met
Surely I could always be that way again and yet
I’ve grown accustomed…to her face.
I could go back to Stanford. And yet, with all its ups and downs, I’ve grown accustomed to this place, this rural mountain retreat nestled near my earthly home.
- 2 Comments on I've Grown Accustomed to This Place
- Posted on May 13, 2015 at 1:50 pm
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,
“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.
- Posted on May 8, 2015 at 1:02 pm
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.
- 8 Comments on Living in Uncertainty - far from the madding crowd
- Posted on April 27, 2015 at 1:00 pm
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.
- Posted on April 7, 2015 at 5:12 pm
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.
- 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.
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.
- Posted on March 7, 2015 at 4:04 pm
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.