I have it. Does this mean I have advanced to a new level, acing an exam to get there?
I don’t have it–yet. Does this mean graduating to the next level, making progress?
I don’t think so.
Advanced cancer is a fancy moniker for metastatic or Stage IV cancer. Progression means the cancer has grown since the last scan. We patients live from scan to scan, like a frog jumping from lily pad to lily pad, hoping not to fall into the water looming dark and murky just outside the zones of safety. And I haven’t even touched on the financial consequences of receiving this type of diagnosis, hopping from one insurance loophole through to the next.
As a clinical trial patient, I must follow the protocol spelled out in the contract I signed. That means I must endure a bone and CT scan every three months to see if cancer has returned or progressed. It’s not a death sentence, but it’s an edge-of-your-seat kind of existence, a life-long sentence.
How does one live with this kind of uncertainty? The best one can. My morning starts by taking pain medication, the kind that is a controlled substance. Who knew I would be doing a drug to which Michael Jackson was heavily addicted. Another pain killer I take every four hours. My day ends with taking more of these high-end pain relievers as well as heart, nerve, anti-anxiety, anti-nausea, and constipation drugs. Beyond all these meds, I look for symptoms that my cancer might have returned and journal any changes. I travel four hours each way to have a treatment every three weeks.
All of this necessary medication doesn’t bring me down, and my sleep patterns have been excellent. Activities with which I try to occupy/distract myself include playing ukulele, writing, hanging out with friends, playing games, and watching TV and movies. Most of the time these work. All of the time prayer works, and for that I give thanks to all those who have lifted me up.
Maybe my life at this stage can be summarized with haiku:
Cancer’s talon grips
Longing to take hold of me
Hope stuns it senseless
Bleak rain-filled daylight
Filters through clouds gray as stone
Praying hands heal sky
Hawks winging upward
Catching draft to soar beyond
Land on outstretched arm
Hope is the key to living “the good life” with this type of cancer. Good news can be found in all the new drugs coming out of cutting-edge research, changing the way doctors view and treat advanced cancer. Good news can also be found in the plethora of resources existing for those living with breast cancer that is not curable, from treatment options to clinical trials and financial support to discussion boards and support groups.
I may not like progressing to this kind of Advanced Placement class, but I’m learning how to cope, and striving to pay it forward. We patients are never alone, and never will be.
What a trip!
What was going to be a simple trip to witness my youngest son Josh graduating from college turned into an astonishing foodie and walking tour of Austin, TX and a meeting of some fabulous people who will become part of my extended family.
Greeting me at the Austin, TX airport were Josh and his lovely fiancee Jessica. The fact that I, a Stage IV cancer queen, was even able to fly with a stopover in San Diego was quite the accomplishment. The plane to Austin was delayed for two hours, but I entertained myself with my iPod Touch and with getting up periodically to circulate and buy snacks. I’m supposed to eat every two hours because my body no longer tells me, “I’m hungry.” I just have to guess at it. Unfortunately the food selections were vastly limited because the gate area was being remodeled. Still, it was worth the wait to arrive in Austin to see two familiar smiling faces as the sun sank to the horizon.
When we arrived at Jessica’s parents’ house, her Dad was there to greet us, along with her frisky dog Mac. All Mac demanded of me was to throw a ball so he could retrieve it. He lived for those very moments. After a scrumptious homemade dinner (something I would never make for myself, living alone), we played the game “Ticket to Ride.” Although Jessica had both the Europe and US versions of the game, she had me learn using the US one. I lost miserably, but no matter. I did get a ticket to ride. I thought. I’m here and I’m feeling like part of the family already.
The next day we rose bright and early so we could head to IKEA. Many people can’t believe I’ve never been to an IKEA store, but until this time, it was true. There are none close to where I live. The selection and arrangements of the furniture were overwhelming. One could go crazy in a superstore like that! After walking around for an hour and a half, which passed far too quickly, we gathered in the car to prepare for the remainder of the day.
After a satisfying vegan lunch of homemade fajitas, followed by my eating two peanut-butter-laden dates for calories, we headed up to Waco to arrive the evening before Josh’s graduation from Baylor University. The following morning Jessica and Josh treated me to a brunch at Cafe Cappuccino, which lives up to its name. The graduation itself was inside a stadium, a big relief from the heat and humidity. This Mom couldn’t have been more proud of her son’s accomplishments as he strode across the stage to receive his well earned diploma, summa cum laude.
Later that evening we celebrated at a local Thai restaurant. Spring rolls and Thai delicacies abounded. Josh had to drive up to Nashville early the following morning, so he said goodbye to me that night. A bittersweet parting.
The next morning we returned to Austin. For lunch Jessica and I headed to Kerbey Lane Cafe, a vegan-friendly place with lots of good vibes. Afterward we visited the famed Cathedral of Junk. How fabulous it was to sit on the throne and enjoy the work of this talented yardist! Exploring various colored rooms was especially intriguing. We then drove back to her parents’ house where I met her Mom, swam, and hung out in their hot tub for two hours while Mac urged me to keep throwing his ruined ball over and over. We enjoyed Chinese takeout and a rented movie before retiring to bed. As I drifted off to sleep, I wondered about whether I would have the energy to see half the sights we hoped to see on the morrow.
I shouldn’t have worried.
The next day my ticket to ride continued as Jessica and I explored shops and savored lunch at FoodHeads Cafe and Catering with a friend of a friend. Then of course we had to visit Amy’s Ice Cream shop, a standout in local Austin culture. Completely full, we headed out to Red Bud Isle, a park where pet owners take their treasured animals off the leash to wander the paths and splash in the water. This spit of land extends into Lake Austin, providing a scenic backdrop to the whole park. Afterward we shared an iced chai at Mozart’s Coffee Roasters on the lake as we read our books on the decking overlooking the marina.
Next stop? The world headquarters of Whole Foods in downtown Austin. We secured our takeout of sushi, grapes, soup and sandwiches and headed up to Mt. Bonnell, Austin’s highest point. An empty picnic table beckoned us at the summit so we could sit and eat while taking in the skyscape that is downtown Austin. Jessica was amazed that I could climb and descend the steps without any trouble and at how much energy I had in reserve. It was truly remarkable–a miracle, in fact. Afterward, we came back to the house, happy and ready to lounge around.
The next day I flew out to go back for treatment, which is at a facility about a four-hour drive from my home. I couldn’t miss the treatment, but I did miss the hospitality of that magical capitol of Texas. How is it one can feel the empty-nest syndrome even away from home? The therapy completed, I drove myself to my empty nest in the suburbs, knowing that I will plan a return visit, at least for the wedding.
This was a ticket to ride to remember. And unlike the Beatles’ lyrics, I DO care. I really do.
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!