On Nov. 22 I was invited by the National Comprehensive Cancer Network to speak at the National Press Club in Washington DC about how I learned to advocate for my own excellent health care. Here is a transcript of my remarks:
Wow. Three years ago I sat in an exam room at Stanford and begged Dr. Carlson to save my life. Never in my craziest fantasies would I have imagined on that awful day that today he would be introducing me at the National Press Club. You never know when life is going to veer in some unimaginable way, and that’s why it is so worth fighting for. That’s also why now, with health care for so many of us speeding along this take-a-number get-in-line track, patients need to be strong and effective advocates for our own good care.
It’s a difficult concept for us lay people to understand that not all health care is equal. Those of us boomers who grew up knowing the family doctor now are finding ourselves facing the diseases of increasing age with doctors we selected from our HMO preferred provider lists.
My father died of prostate cancer seven years ago, after six years of treatment that I realize now was not aggressive enough. I feel guilty that I didn’t know then how to be a good advocate. Because he was diagnosed at age 70 (going on 60), I think they figured he would die of something else first. He died at 76, painfully, of cancer.
But my cancer advocacy story starts in February 2010 with a heart attack my mom suffered in a small town in Florida. During my dad’s disease she suffered from stress-induced cardio myopathy that is triggered by traumatic events. In 2010 she suffered another attack and was life-flighted to a hospital that failed to identify that she had suffered an actual heart attack. Very simply, the left ventricle paralyzes. There’s no blockage. It’s the cause of fewer than 2 percent of all heart attacks.
She called me in California the next morning and said doctors told her she didn’t have a heart attack and they were discharging her. Yes you did, I said. I was frantic. Don’t go, I begged. Let me talk to your doctors. I begged the friends who were headed to the hospital to drive her home not to let her leave until I made sure the doctor understood. Please find him. Let me talk to him on the phone. Her neighbor at the retirement park said: “I’m not sure I feel comfortable doing that.” And I could not imagine that with a life at stake someone wouldn’t demand answers. But this man comes from a time when the healthcare system had your back, and from a generation and a mindset that tends not to question authority, and doctors are authority.
Before my plane left to go to her, that neighbor called. Your mom had a problem. She’s still in the hospital.
OK, I said. But she’s OK, right? (Long pause.) I don’t think so.
At the hospital I found my mom looking, well, not like my mom. She was bloated from steroids or fluids and on life support. They were keeping her alive until I got there. When they had tried to discharge her, she got up out of her bed to put on her lipstick, because my beautiful 80-year-old mother is vain that way. She stood up and immediately coded. Fell right back into full cardiac arrest on the floor and hit her head.
Now it’s a Saturday in a Florida town that used to be swampland BUT it just so happens the town’s only cardiac surgeon is right outside the door for another patient. 3 charges with the paddles get her going, and he rode straddled on my mom pumping her heart to the operating room, where he hooked her up an external pacemaker.
So that’s what I walked into. I was desperate, fearful, afraid. I missed my dad horribly and I couldn’t bear losing my mom. So I went into reporter mode, which is what I do in emergencies. My experience as a journalist has shown me that experts are happy, flattered even, to be asked to share their knowledge. Just ask! At the hotel I researched on my Iphone. I found the doctor who then was the US expert in this kind of heart attack. He was at a university in Minnesota. In the middle of the night I called his office and left a message on his answering machine asking him what to do. Could he give me advice? I was desperate.
At 8 a.m. exactly the next morning my phone rang and it was the doctor himself. My heart leapt. I told him of my mom’s history and he immediately said I had to get her to a better hospital.
But how? and where? The Mayo Clinic in Jacksonville, he said. He stayed in touch with me all day AND over the course of several conversations he found a colleague who agreed to admit her. Then he told me what to tell the Podunk hospital officials: “she needs a higher level of care.” That little phrase ‘higher level of care’ saved me a $25k transport fee. I’m sure it was worth it to the hospital to get ME out of there.
At Mayo I kept a beautiful photo of my mom cued up on my iphone and every time a nurse or doctor came in her room I said “this was my mom 3 days ago.” I was not going to allow anyone involved in her care to think she was a woman who already had one foot in the grave, which is what happened with my father.
So to wrap up this story, we got her there and my mom is alive and well and has a new boyfriend.
My mom’s friends were joyous. They asked me if I’d be their healthcare advocate when they needed one. That was my first inkling how perplexing everyone sees our health care system, even before the Affordable Care Act.
I’ve been lucky in doctors and in health (until cancer), so I thought everyone got the best possible care wherever they went. I figured some doctors were smarter and better trained than others, but care is care.
I was about to be personally jolted into healthcare reality.
Exactly three months pass since my mom’s heart attack. I’m back in California and it’s time for my annual physical. Actually it’s a few months past time.
And on that day I experienced the helplessness my mom’s friends had felt so many times before: while something’s trying to kill me I have to make the most critical decisions of my life.
Dr. Hailu had abruptly ended my physical when she found a lump. I could tell by the look on her face she had no doubt what it was. She said she’d set me up with a mammogram in the next day or two. No, I won’t be able to even sleep. Can I do it today? She got them to work me in right away. After the mammogram they performed an ultrasound. My partner and I both saw the black mass on the screen, then a second one (here). Can I come back tomorrow for a biopsy, they ask. Can you just do it now? They agreed to stay late.
So what happened in all of these instances? I asked for things because they were important to me, because I didn’t want to be left hanging, not knowing. Perhaps worrying over nothing. Instead of fitting me into a random appointment convenient for the system, people helped me out. Because I asked.
Now I’m seeing, on just the first day of my diagnosis, that there are multiple ways things can unfold. I can wait until I fit into a schedule, be complacent and take what comes my way, or I can act with a sense of urgency and take some control. With a cancer diagnosis comes an overwhelming feeling of the loss of control, so taking control of the things that I could was my small comfort. Fighting for one’s life is no time to be timid. People say they don’t want to be a bother, or don’t want to make the doctor mad or irritated with them.
But my experience is that doctors want patients who take their treatment seriously.
Cancer. Oh man. I didn’t know a person could feel such terror.
My partner and I saw an oncologist in Fresno two days later. He comes into the room and says, and this is a direct quote, “I wish I had better news for you.” And then … his cell phone rang … and he stepped out of the room to take the call. Are you kidding me? Am I going to die? He comes back a few minutes later … “There are other kinds of breast cancer that would be easier to treat.” And then – I kid you not — his phone rings again. He left the room to answer the phone three times, but I already knew by the first call he was not for me – or anyone. I also decided then I wouldn’t stay in Fresno for treatment.
I figured I had one chance to do it right, and I didn’t want to find myself years down the road with cancer back, regretting I didn’t demand the “highest level of care” possible, like I had found for my mom.
I called friends, and friend of friends. Where should I go, what should I do? I didn’t have anyone in my life then who had had breast cancer (boy that sure has changed). More than one of them told me about Dr. Robert Carlson at Stanford. I was told that he chaired the panel that wrote the US breast cancer treatment protocol for the NCCN. That sounded pretty impressive. I called his office immediately to get an appointment. Dr. Carlson, you must know, is a very popular breast oncologist. His first available appointment was 6 weeks out. I did understand from the cell phone doctor that I had a very aggressive form of breast cancer. I figured, then, that I had to be more aggressive than it.
I told Dr. Carlson’s appointment person that I would call every day, two or three times a day, hoping for a cancellation. I told her that I could be there at a moment’s notice. I also contacted a friend who had suggested him and told her about the wait. I think she sent Dr. Carlson an email. By Friday of the week I was diagnosed Dr. Carlson’s staff knew my voice. On Friday afternoon she said “Can you be here Monday at 8?”
We made the 3-hour drive the night before and arrived at the Stanford Cancer Center at 7:30 Monday morning. It was overwhelming. People without hair, people wearing breathing masks, people in wheelchairs. (my future). I’m here to see Dr. Carlson, I said. The woman looked at me blankly. Dr. Carlson doesn’t have clinic on Mondays. What? They told me to be here at 8. Oh, Are you Tracie? He’s coming in special to see you. I burst into tears.
At that moment, for a fleeting second, I felt I was going to be OK.
Dr. Carlson spent two hours with Michelle and me carefully explaining what I had (HER2 positive breast cancer) and what it meant. He never once took a phone call, btw. He offered up treatment options and the odds that each would be successful. What did I know? So I said if I were your sister, what would you tell me to do? The answer was brutal. He got me into a clinical trial. I would have two kinds of chemo every two weeks, then a different chemo with the trial drug Lapatinib, followed by surgery and radiation and a year of the chemical antibody Herceptin. And then hormone blockers. (Breathless Whew.) I began to wonder if he even really liked his sister?
The next Tuesday I got my port and the next Tuesday chemo started. So 3 weeks from diagnosis to attack.
I immediately began keeping a daily blog of my experience. I didn’t mean for it to be anything other than a way to keep my friends and family informed about what was going on so I wouldn’t have to send out countless emails. But as a writer it was also helpful to work through my feelings with it. I also would end up writing about people who were nice to me at Stanford, and (not by name) a couple of people who seemed, well, off. I wrote about how I felt physically, and emotionally. Sometimes I would just write that I was too sick to write anything. Another oncologist told me that blog helped me to get the best possible care because so many people at Stanford read it and nobody wanted to get called out.
Sometimes I’d be sitting in Dr. Carlson’s examination room waiting for him and his PA Katie would say he was catching up on my blog.
(I was a bit disappointed to learn from her that you didn’t check it daily Dr. C)
Because in my mind, for the year and a half I was in treatment at the Stanford Cancer Center, I told myself I was the most important patient there and everyone else existed to support the practice. It helped me to ask for things, or to go a route that might be more difficult for the care provider, but made me feel better. For instance, I thought it was counterintuitive that I kept getting mammograms during chemo. Wouldn’t that machine squeeze cancer cells out of my tumors and send them coursing through my lymph system? Dr. Carslon did not necessarily agree, but he prescribed ultrasound instead to ease my anxiety. And he didn’t belittle me for asking.
I read everything I could find about HER2 positive breast cancer, every research paper published, surveys about women’s anxiety after single mastectomy and prophylactic double, and even crazy theories. That’s how I learned that those MRIs and CAT scans use dyes that have substances in them that can be carcinogenic, right?
But it makes them easier to read. So I asked not to have the dyes. Why if I’m fighting cancer would you add a carcinogen to my regimen?
Of course I wasn’t just a demander. I cooperated fully in getting well. I changed my diet, stopped sugar, went completely organic, and became an obsessive label reader on my health and beauty products – another source of hidden carcinogens. (This town has a powerful chemical lobby. Health care? Not so much). I like what little hair I’ve managed to grow this color, whatever it is.
And yet despite all I’ve done for myself, I have close friends who I have to kick in the behind to get them to demand quicker appointments, or more thorough tests. I’m constantly frustrated when they’re afraid or too shy or unmotivated to make those demands, or even seek a second opinion.
A few months ago the wonderful Dr. Joseph Mollick, my oncologist who replaced Dr. Carlson when the NCCN stole him away, also left Stanford. I felt abandoned again, but saw it as a chance to find someone closer to where I live now in Sacramento so I don’t spend 6 hours on the road in Bay Area traffic four times a year on checkup day. I asked again for help, and Dr. Mollick suggested someone both of them know who has an exceptional reputation.
Unfortunately her practice, I learned when I called, is closed to new patients. So… I asked Dr. Mollick to call her on my behalf. He happily did. I’m now her newest patient. I saw her for the first time two weeks ago. She spent an hour with me and is wonderful.
I feel now like I hit the trifecta of oncologists, and it’s another example of how important it is to ask – to demand – what you need. Now more than ever with health care prices going up, coverage becoming less and healthcare providers becoming spread increasingly thin it’s essential that patients, their advocates and their families understand they must be extremely active partners in their own health care. And aftercare. I called my mom this morning to tell her I love her and she was headed to water aerobics.
Last month I celebrated my third year anniversary of my remission. I am so happy to still be here on earth, and to be here today to share my story. I hope it is helpful. With my knees clutched to my chest in the throes of chemo nausea, I often prayed that the hell I was going through was so someone else would have it easier. Bless all of you advocates and cancer care providers out there. Thank you for listening.