Today I am featuring a guest post by Maya Silver about what it’s like to have a parent diagnosed with cancer. Maya Silver is the co-author (with her dad, Marc) of My Parent Has Cancer and It Really Sucks, the first guide for teens whose parents have been diagnosed with cancer. She lives in Crested Butte, Colorado, where she works as the executive director of the Office for Resource Efficiency and plays in the mountains. She won the Diane Vreuls Fiction Prize at Oberlin College in 2008 and has written for U.S. News & World Report and the Washington Post Express.
As a parent myself with cancer, I am proud to feature the point of view of the child.
Cancer inevitably causes anyone directly or indirectly affected by it to suffer through difficult emotions. Teens who have a parent with cancer experience fear, sadness and helplessness. They worry. They feel guilt. They hide anger. It’s an uncomfortable time, to say the least.
I was 15 when my mom was diagnosed with breast cancer. The news immediately released a flash flood of anxious thinking. It’s easy to get carried away in a downward spiral of “what ifs.” One fleeting fear is reinforced by a random story you find online or hear from a friend and begins to take on a life of its own.
I didn’t hear many reassuring things during my mom’s battle with cancer because I rarely sought out support. My answer to friends’ inquiries about how my mom, my family and I were doing was a curt “fine,” followed by a strategic change in topic. My parents and I elected not to tell my teachers or guidance counselors. I never saw a therapist or visited a support group.
The most soothing thing in my mind was the answer to my most important question: “Will Mom be okay?” aka “What are her odds of survival?” I can’t remember when I asked my parents this question but it must have been shortly after they broke the news to me and my younger sister, Daniela, who was 12 years old at the time. They picked us up from school, turned to the back seat and revealed the news.
We were lucky – I knew that then and I know that even more so now. The answer to my question of survival was a resounding “yes, probably.” In some ways, the knowledge that my mom probably wouldn’t die enabled me to avoid dealing with it directly. I didn’t have to view each day as the possible last. I could more or less banish the dread of a mom-less world from my mind. I could go on with my life.
Anytime I saw my mom, fresh from a chemo round – bald, pale, exhausted, sick – I could swallow my distress with the calming conviction that this was all temporary. Surely, she would be healthy and cancer-free again soon. When I was at a party or a friend’s house, a nagging voice of guilt would often creep up to scold me for not being at home where I could support and spend time with my mom. I could quiet this voice with the rebuttal that my mom wasn’t going anywhere and I didn’t need to treasure final years, months or days.
While the confident belief that my mom would be fine was incredibly reassuring, it also led me to be less supportive and present than I should have been. A small part of me wishes that my teenaged self would have been less certain that everything indeed would be okay so that I would have been a better daughter and forced to deal with the experience in a more confrontational manner.
For My Parent Has Cancer and It Really Sucks (Sourcebooks, 2013) – a guide my father and I wrote for teens whose parents have cancer – we interviewed over 100 teens and experts. Here are a few of the reassuring sentiments that provided many of these teens with solace:
- Just because mom or dad has cancer, it doesn’t mean you will get cancer. Only 5-10% of cancer cases are genetic.
- Your mom or dad probably didn’t get cancer for a specific reason or because they did something wrong. Bad things happen to good people.
You don’t need to be a teen angel. You can still keep living your life. You can still talk to your family about school and friends. You can still get mad at mom and dad.
So here I am, back at home again, after a three-month and more hiatus. Last autumn I experienced chest and back pain, vomiting, and shortness of breath that went beyond scary. It went beyond first aid.
In early November 2012 I was diagnosed with Stage IV breast cancer that had spread to my lung cavity and bones. My last recurrence in 2003 was stage I breast cancer, treated with a double mastectomy, chemo and–much later–Herceptin. But like a horror movie, in 2012 the cancer clearly told me in full force, “I’m back!” My pleural cavity was filled with fluid, causing the shortness of breath. A biopsy of the fluid showed it to be HER-2 positive. The cancer was treatable, but not curable.
Fortunately, my oncologist in northern California is a former fellow at Stanford. He had choices for me. He knew the Principal Investigator of a Genentech-sponsored Phase II clinical trial at Stanford comparing T-DM1 (Kadcyla) and taxol with T-DM1, Perjeta and taxol. He thought I would be a perfect candidate. Indeed, after undergoing several scans I was found to qualify for the study. I am only one of five patients in all of California in this particular trial. Since it is unblinded, I was happy to know I’m in the study arm that gets the antibody combination.
During the clinical trial I stayed with a wonderful friend and prayer partner who not only hosted me, but became my care enabler. She nursed me during the early days when I was unable to take care of myself. And she drained my lung cavity every day, removing dressing, applying antiseptic, hooking up a vacuum bottle, and reapplying new dressing. I couldn’t have done it without her. She taught me how to drain the fluid, so that I could do it myself when I went home. What an angel she was–and is!
After three months the scans showed that my lung cavity was normal and my bones were healing. Two palpable tumors on my back are also gone, with no trace of where they once were. The doctor views it as a complete response to the drugs. I am so thankful that Genentech developed these targeted antibodies. I am able to lead a normal life now with minimal side effects: that is, no more vomiting or indigestion, and my hair is growing back now that I am off the taxol. Without this treatment I would have had Herceptin and maybe also Perjeta, both very excellent options. But I was thrilled to get T-DM1, the Cadillac of drugs, since my cancer was so aggressive and I was in so much pain.
On Feb. 22 I was pleased to learn that the FDA approved T-DM1, known by the trademark Kadcyla. On Monday, Feb. 25, Genentech celebrated by having a traditional ringing of the bells at its South San Francisco headquarters. My story was read at one of the bell ringings.
I’m inspired by the miracle of life, by each new miracle that allows me to get a good night’s rest, wake up pain-free in the morning, and look forward to connecting with my friends, my church, and my sons. I deal with side effects such as fatigue, some achiness in the legs and peripheral neuropathy in the hands and feet. But I’ll never take another day for granted.
It’s thrilling to be back!
After my son Josh picked me up at the Dallas-Fort Worth Airport two weeks ago, we sped away to Waco, home to Baylor University where he’s a senior. That night we caught the last half of the first Baylor football game of the year.
The next morning, Labor Day, after I enjoyed a tasty breakfast at the hotel, we headed off to Homestead Heritage at Brazos de Dios near Elm Mott, TX. That particular day they celebrated a Sorghum Festival with demonstrations in so many ancient crafts: blacksmithing, weaving, grist milling, pottery making and farming. Complete fun, and an escape from all things California.
Hungry, and unable to wait 1.5 hours to get a seat at the Homestead Heritage cafe, we made our way to Cracker Barrel, where we had to wait only 20 minutes for a table. No worries. We easily spent the time scouting their gift shop for the perfect birthday present for his girlfriend. Only a mom could help him solve this problem.
After a lovely lunch we took a break to read in the campus library for a couple hours–I with my i-Pod reading “Invisible Man” and Josh with some kind of textbook. Eager to meet his roommates, I implored him to take me to his apartment where his friend told me they would be. They are just as charming as Josh’s description of them, polite and modest.
Off we then headed to buy us some bubble tea (with black tapioca in the bottom). Mine, an almond concoction, was divine in every sense of the word. We took our drinks over to a famous suspension bridge that crosses the Brazos River. Following tradition, Baylor students throw corn tortillas over the side to see if they land on a concrete pier. If not, the ducks dive and swoop for them. Everyone wins.
Next on the whirlwind tour was a visit to a local park laced with trails and views. Josh coaxed me into climbing the 89 stone steps of Jacob’s Ladder. The problems? I’m out of stair-climbing shape, the temperature well exceeded 100 degrees, and almost every step was higher than a standard step. The next day my legs paid for it, but it was worth the exertion. Anything to have fun with my son in the sun.
The next park destination was Lover’s Leap, which overlooks the river. A fun place to take photos of the view–and of us!
The afternoon wasn’t complete without a kayaking excursion. The Baylor Marina sported all kinds of water craft that day when the students were off from classes. We headed out onto the river and explored inlets. A thoroughly magical excursion, especially when I thought I might never kayak again because our lake house must be sold.
The day still hadn’t ended. We feasted our eyes and taste buds on a local Thai restaurant, a favorite haunt of Josh and his girlfriend. The evening wouldn’t be complete without topping it off with a frozen yogurt complete with delish condiments: fruits, syrups and candies. Fun stuffed us to the gills!
We ended the night watching the movie “Madagascar” at his apartment, a flick requested by yours truly. When he took me back to the hotel, I still had energy for a short swim and hot tub immersion in their indoor facilities.
If this wasn’t heaven, I don’t know what is.
The next day Josh had classes, so he picked me up late morning and we ate lunch at the college dining hall. This place was food court heaven, with any type of cuisine you might desire. Taking advantage of this rare opportunity, I filled my plate high with salad, main entrees, and wraps. Then I went back for a big bowl of soup. You’d think I were a starving refugee.
After lunch Josh dropped me off at Common Grounds, a popular coffee and music hangout adjacent to the campus. I reveled in the funky nature of my environs and the college conversations all around me.
When Josh picked me up he gave me a leisurely tour of the campus, including the building where he spends most of his time. Of course we had to make our obligatory trip to the college bookstore, where I purchased a Baylor University Mom decal. Then we stood in line for root-beer floats at the afternoon Dr. Pepper Hour.
Soon enough, it was time to be dropped off at the campus Starbucks while Josh attended his last class of the day. Sipping a skinny vanilla latte, I listened in on various conversations as I tried to read my book. Soon Josh came and we went out for TexMex at a dining establishment with hubcaps on the ceiling. We finished the night watching “Madagascar 2″. What else could we watch but a sequel?
The next morning, after a hearty omelet breakfast at his dining hall, we headed for Dallas, for my lymphedema conference. More on that experience in my next blog post.
For this post I decided just to focus on the time Josh and I could spend together. I had been looking forward to this trip for two years, since the last National Lymphedema Network conference in Orlando.
And it finally came to be.
The campus visit was far more than this mom (with all the physical and emotional pain she has experienced over the past year) had anticipated. I probably gained five pounds in two days. But I was deep in the heart of Texas, where my son resides and my heart belongs. Where bluebonnets spring up along the roadside at certain times of the year. Where else would I want to be?
Where do you enjoy going when you take a trip? Do you often see family?
In extraordinary times, the ordinary takes on a glow and wonder all of its own. Mike Lancaster
The final day of Marie’s challenge dawns upon us. I’ve thrived throughout this exercise of paying tribute to the ordinary in our lives, in these times that truly are astonishing. Eye-popping, even.
Today I feature my oldest son at 3 at the Oakland Zoo in California.
Mom and I get to ride a horse that goes up and down. Hope I don’t get too dizzy. (Oh the joy of a carousel ride! This little boy’s great grandpa used to restore carousel horses for the City of Rochester, NY during the depression. He never lacked for work during that time.)
And finally, the petting zoo, where I can beg Mom to buy food for these starving animals. How different this guy feels from the bunny fur and scratchy beard in “Pat the Bunny” that Mom reads to me every night at my insistence.
These had to be some of the happiest times of my life, when wide-eyed boys viewed the most ordinary as a miracle, when my parents were alive to witness it all. It’s been a pleasure to feature an extraordinary little boy awed by a world made wondrous by those who create zoos.
May we never lose that sense of wonderment!
A potpourri of treasured memories.
That’s what I’m celebrating today as the ordinary for which I’m appreciative. And I’d be remiss not to pay tribute to Marie for starting this exercise, which has energized and revived the esprit de corps of those bloggesses who are participating. I believe all our posts are richer as a result of digging deeper to find treasures right under our noses.
The first marvel I’m featuring today can be found right in my living room: a collection of shells and ceramic rocks that my mother treasured, as well as a framed image of a younger me with my three sons. The pendant I draped over the photo, with the simple word “Dream,” came from a women’s retreat I attended last September. After I finished visiting all the prayer stations in one room set aside at the retreat for that purpose, I saw this lone pendant. Next to it was a simple sign urging me to take it. Free.
This simple word “Dream” kept me going through all the dark days that followed. And now I have realized that which I’ve imagined all these months–an independent me making my own choices and charting my own course.
The other treasure, perched on my coffee table, is a clay-designed wine bottle from Del Dotto winery in Napa Valley. Last January I met my cousin and her husband from southern California in this lush location of rolling hills, lavish as much in the money spent there as in the acres upon acres of vineyards. Amidst these special surroundings we tasted superb wines and savored exquisite appetizers while catching up on our lives.
The wine bottle from Del Dotto was so unique that we both decided to save it as decor for our living rooms. To top it off, we both purchased a candleholder that fits into the wine bottle along with two candles that look like corks. We landed such treasures in Healdsburg, a charming town nestled in the heart of Sonoma Valley.
When I returned home I finished the wine, a delightful bouquet of aromas and flavors, and set the empty bottle down with its unique topper. Later I decided to place beneath it a painted tapa cloth made from bark in Rarotonga, a South Pacific Island that our family visited over a decade ago. It seemed only fitting to mix the cultures into an eclectic blend of recollections.
I plan to hold on to these reminders of joyful days, days of which I dream, days to savor and remember those who love me and whom I love.