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.
It’s been a while since I’ve updated this blog and I came to realize it was because it’s hard to think about how sick I was when I’m feeling so good now.
I’m back and work and loving it, and I’ve found that the low-level sickness I felt disappeared when I returned to my job at AP. Now I focus on my stories instead of cancer. It’s amazing how good a person can feel when one doesn’t sit around thinking about being sick all day.
Which leads me to why I feel good.
I saw Dr. Carlson last week for my regular 9-week checkup. I always have a list of questions for him and one of them is the question so many of you ask: “When will you be in remission?
I always answer “I don’t know.” I’m still in treatment, after all, because I get the chemical antibody Herceptin infused every three weeks. I always figured it would be sometime after that.
So I asked Dr. Carlson: “My friends want to know when I’ll be in remission.”
“You’re in remission,” he quickly responded.
“What?!! Why didn’t you tell me?”
But he had, in his own way, he said. He told me I’m fine. He told me he thinks I’m cancer free.
But I kept listening for the word that everyone knows. As if he was going to make some sort of pronouncement.
Remission is a word for all of those things: cancer free, fine, healthy, etc.
And that’s what I’m in now.
I’ve never felt better in my life. I appreciate my good health and I constantly work at making it better.
I’m in remission. And there I plan to stay!
I just spent a week in Jalisco, Mexico reenacting the last good time I had before my shocking breast cancer diagnosis. I was surprised at how emotional the trip was for me.
Last spring I bonded with a group of people on a tour of premium tequila distilleries. Because I was a stranger to the word “moderation,” my zest for fun and good tequila made it seem even more shocking to my new friends when, two weeks later, I learned I had a very aggressive form of breast cancer.
Of course I stopped drinking immediately, preparing my liver for chemo and other drugs. As the year of my confinement to bed and the sofa wore on, I often daydreamed about my last fun time – wondering if it would be my last, hoping and praying that I would feel good enough by the next trip to go again. All while I was feeling like I would never be able to walk to the mailbox, much yet travel in a foreign country.
Along the way my new tequila buddies visited and sent encouraging emails of support. A few even started a drive that landed me several bottles of a no-longer-produced tequila from one of my favorite distillers, Casa Noble. They were designed to be my incentive to get better so that one day I could enjoy my favorite beverage, albeit in much smaller amounts.
My tequila buddies were just part of a large group of friends and family who have pulled me through this long ordeal. I could hardly wait to see them again in part for the friendships, and in part because it would mark the end of a very long year.
The trip was a success. I took a book anticipating I would spend much of the time resting on the bus since the trip was the first time I had been out of bed all day. I was weepy at times, but their enthusiasm and encouragement kept me going, especially when I was dragging on the second half of the trip.
I learned a lot on the journey, but mostly I learned that there is a universal distain for cancer. The word translates into Spanish exactly. When people called me “senor,” confused by my short hair, I responded with my new phrase “Tuve cancer.” I HAD cancer. Their beautiful responses moved me. I got so many hugs from people I don’t know that I quit counting.
So today I am home suffering, bone weary and exhausted from trying to do too much. But I am happy for so many reasons: I survived the year, and I was reminded that love and support transcend distance, time and even language barriers.
One of these days I’ll wake up and physically feel like returning to my job. Psychologically, however, it’s going to be tough.
I left work on the day of my diagnosis — May 3, 2010 — and never went back. My editors were great. “Your only job should be getting well,” they said time and again. So I threw myself at it, focusing on ridding my body of cancer in every conceivable way.
Diet changes, exercise, obsessive ingredient label reading to avoid the carcinogens that fill so many health and beauty products, detoxes, reflexology, alkaline foods, meditation, visualization, the list goes on and on. Plus the clinical trial at Stanford that gave me pills and three kinds of chemo. Plus radiation. Plus a double mastectomy.
Getting well has been my fulltime job. I get up in the morning and start working on getting healthier and go to bed early so I’ll get enough sleep.
Sometimes I believe that I had such a good response to my treatment because I willed the cancer away.
So going back to work, or doing anything that makes staying healthy less than a fulltime mission is frightening to me. I don’t want to take my focus off of my health, my fulltime job for the past 11 months and the most important job I’ve ever had.
I’m afraid, truth be told, that if I let up my vigilance, if my focus turns to something else even for just eight hours a day, I’ll be letting down my guard and the cancer can sneak back in.
The thought of that scares the heck out of me.
I talked about that fear last week with a psychiatrist at Stanford. Well, I told her that it was something that keeps me awake at night. She thought about it for a long while before responding.
“But aren’t you far more in-tune with your body now? Don’t you think you’ll notice if something changes?”
The thought that I could tell if cancer reappeared made me feel better, though I’m not sure it’s true. And now that I’m writing this I realize that my fear is that a reduced focus would allow that to happen. If it comes back I have to do this all again.
So that’s my dilemma. I’m still too tired and weak to go back to work, but when the day comes – and I hope I am closing in on it – I hope I can devote the required amount of attention to both my health and my career.
I’d like to think I will succeed at both.
I’m sad today over the passing of a woman with HER2 positive breast cancer, the same cancer I battle. I didn’t even know Emily – she’s the sister of a friend of my good friend and supporter Bryan. But her battle was my battle. She was diagnosed many months after me, read my blog and was heartened by my success. One person’s success means someone else can do it too. Likewise, someone’s death frightens us all. She didn’t respond to the treatment like I did and this insidious, aggressive form of breast cancer spread even while she was on chemotherapy. I don’t know all of the details, but from diagnosis until her death today was about six months.
I hate cancer. I hate the sickness and sorrow and grief it causes. I hate that wonderful people with friends and family who love them have to suffer.
And I’m scared.
Just when I start worrying that my recovery is too slow, the universe reminds me how far I have come.
Twice this past week I saw myself in my rear-view mirror and rejoiced.
First was at the office of my radiologist, where I returned triumphant from the day they had seen me last now with a fuzzy head of hair, a sparkle in my eyes and a robust color in my cheeks. My healthcare team truly seemed happy to see me looking so much different than the day of my last radiation treatment on Christmas Eve.
As I sat awaiting Dr. P, a familiar figure came through the door. It was me months ago: a woman recovering from chemo and a mastectomy. She was walking slightly hunched over, most likely from the pain of burns on her chest, and looked wan and frail. A pink scarf covered her bald head.
She sat across from me and I offered a smile. She weakly smiled back. I tried not to stare at this person who was creating such a flashback moment.
Finally I spoke: “You know, you are me three months ago. I have hair; I go to the gym. Before you know it you’ll be your old self, only better. You can do this!”
She smiled and took off her scarf to show me her head. “Thank you,” she said, “I know I can.”
The next day I was back at Stanford in the Infusion Treatment Area hooked to the drip bag delivering the chemical therapy I’m on until October – Herceptin. I actually love going there every three weeks because my healthcare team always seems excited to see the progress I’ve made.
But being hooked to a chemical anti-body through a port in my chest always gives me pause. At least it’s not the toxic chemotherapies that nearly killed me last summer, I reminded myself as I stared at an older woman in the recliner across from me rubbing her shiny bald head. That was me six months ago, constantly weak and nauseous from Adriamycin, Cytoxan and Taxotere, but willed to fight by my friends and family.
With my bag of chemicals half done, hers dripped to an end. Her husband pulled out a camera as the nurse removed her IV. She started sobbing, but they were tears of happiness. I heard her say that it was her last round of chemotherapy.
I was flooded with emotions as I remembered my own last round and the nurses and doctor who gathered to sing as we celebrated the end of a life-altering ordeal. I wanted to speak to her, but am mindful that some people don’t want to be bothered. So I did what came naturally – I started clapping. Slowly at first. Then others around us joined in when they realized what was happening. We all either know what it means to finish, or we imagine the joy we will feel on the day we no longer submit our bodies to poison in an effort to save them.
The woman slowly stood up, dried her eyes, and gave me a thumbs up sign.
I could barely see it. My eyes were brimming with tears.
My posts are becoming more infrequent because, frankly, they would bore me, and you even more. Wake up slowly. Drink green tea. Go to the gym. Come home and collapse for the next 3-4 hours. Repeat.
I’m not getting my stamina back as quickly as I thought (hoped) I might. Everyone told me it takes six months for chemo to leave the system and that mark doesn’t come until the end of the month. So I make the absolute most of the brief spurts of energy that I have.
I’m diligent about the gym as I try o make my heart stronger to fight all of the drugs I have to take that can make it weaker. Who wants to go through all of this cancer treatment just for congestive heart failure??!!
I skipped the gym yesterday, though, when I began experiencing weird pain in the area where I had radiation. I’m not sure what caused it, but after weeks of no pain I felt the sharp stabs of burned flesh on my chest and back – the spots where I had been most badly burned. My guess is it’s nerve endings regenerating, but I’ll know more next week after another visit with my radiologist.
Other than that the only reason to post this is so that I can show you my hair again. I’m so excited that it’s growing, and for some reason I really like the color. Love it even. After all of these decades of dying my hair, I now know what I really look like. I’m not sure I even look older than I used to, especially as I stare at the photo of me on this blog.
She seems like a stranger to me. Vaguely familiar, but someone who hasn’t gone through the life- and attitude-altering fears and experiences that I’ve gone through. I feel sorry for her, in a sense. She didn’t know about true love and friendship. She waited and longed for something good to happen, rather than finding good in the moment.
In short: not the me of today.
So today I’m proud of my gray hair. I earned every one of them!
Everybody loves a survivor. Not everybody gets to survive.
I’m convinced that setting goals and having something to look forward to helps get cancer patients through the tough times.
Take our trip last weekend to New York City, for instance. Last August, while I was in the throes of chemo, my friend and old editor Fran Smith came from NY to visit for a few days. On the flight out she said she tried to think of something to do for me that would give me something to look forward to. She said she thought of tickets to the Daily Show with Jon Stewart.
I love him and love the show. Laughter can get someone through cancer treatment. Who knew it was the hardest ticket to get in town? Certainly not Fran when she thought aloud that she would like to do that for me.
Poor Fran was stuck. How would she ever pull that off? I, on the other hand, blissfully looked forward to the day I could get on a plane and travel again – to see Jon Stewart!!!!
Michelle and I talked about it constantly. It was this abstract goal, and its achievement would mean I was getting back to being my old self.
Fran must have been panicking until the moment she scored, which was on the second-worst day of my cancer life. I’ve said before, there are no coincidences in cancer recovery. As Michelle and I were driving to Stanford for my double mastectomy, alternately in silence and sobbing, Fran called.
Fran was at a silent auction for the National Audubon Society, where her husband David (and our former managing editor at the Mercury News) had just taken over as CEO/President. There amongst a table full of bird etchings was the prize: four VIP tickets to the Daily Show and a backstage tour. She called giddy when she won the auction, boosting my spirits as I headed into the procedure that forever would alter how my body looks.
During recuperation we planned our trip for Valentine’s Day. Surely I would have enough energy to walk around the city by then, I thought.
The trip became more than simply a travel goal. Making it to the show would represent 10 months of life-saving struggles behind me.
Just being there overwhelmed me and my eyes kept welling with tears. We had four of the 30 VIP tickets in a studio of 210 people. We sat on the side, in what would be Stewart’s line of sight when he interviewed his guest.
But first, the warm-up act. Comedian Paul Mercurio, an Emmy and Peabody-winning writer for the show, came out to coach us on how loudly we had to laugh to be a good laugh track. We couldn’t quite get it (you have to be really loud because the mics in the audience are at half the volume has Stewart’s). Then Mercurio said something funny and I was the only one who laughed. Very loudly.
He spun around and made eye contact with me. “That’s how loud you have to be, like the woman in the green scarf.”
For a split second I froze as all eyes turned on me. This was my moment. I had to seize it.
So I stood up, threw my arms out wide and exuberantly said “This is my Make-A-Wish trip.”
The audience erupted in applause. For me!!!
And it was the beginning of a sustained exchange between me and Mercurio, who of course had to complain that cancer isn’t funny. I got to thank Fran and David for getting the tickets that landed us there, I talked about my hair and how everyone in NYC just thought I was fashionable, not a patient recovering from chemo. He would talk to others in the audience, but kept coming back to me. He asked me if I had a partner or husband, and I put my arm around Michelle and told him she’s my partner. “Oh, and you’re gaaaayyyyy? That’s even better,” he said before making a risqué joke about me and cancer.
“I need your email address,” he eventually said, borrowing a pen and piece of paper from someone in the audience. He’ll be in Sacramento in April and invited Michelle and me to come.
For a long while, I was the center of attention. And that wasn’t even the best part of the experience. Of course there was a very funny Daily Show episode — and we all laughed loudly.
Then as we filed out of the studio a funny thing happened in New York. People I didn’t even know came up to me and wished me luck. A woman who works for the show gave me a long hug and said her aunt is fighting breast cancer now. Others said they would think good thoughts.
Everybody hates cancer. It’s not funny. But to be in a place where I can laugh at some of my experiences shows me how far I have come.
Ooops. I got overconfident this week and got knocked on my ass. It was definitely my bad.
First I had my Herceptin infusion last Friday. It usually makes me a little tired, but I try to suck it up and get on with my routine.
Then, with Herceptin still pumping through my veins, I had an MRI with an infusion of contrasting dye on Monday. I dislike the procedure and the dye, a carcinogen, but again tried to plow on with my routine, such that it exists (going to the gym in the morning, when I have energy, then recuperating in bed in the afternoon.)
Well, as I wrote before, part of my exercise routine includes spin class when I can muster the energy. On Tuesday I decided to give the class a try.
I realized with hindsight that a half-liter of Herceptin and who knows how much of contrasting dye is the opposite of blood doping. Instead of getting oxygen into my blood, I have a feeling now that those foreign substances in my bloodstream take up space for oxygen.
By the end of the class I could hardly drive home. I spent the rest of the day in bed and most of Wednesday, too.
So to all of you who keep telling me not to overdo it – you were right. I did. And I suffered for it. Not only suffered, but lost a couple of days in my fight to get my energy back and get back to work as soon as I can. It’s Saturday and I’m still moving slowly.
I know now that I can only go as fast as my body will let me go. Patience has never been my forte.
I will practice.
With the pain and horror behind me, I’ve been working on getting “me” back. Whatever that means now.
It won’t be the old me. The stressed, lazy me. The hair-dying, non-label reading me.
The new me is a work in progress.
For one, the new me is happy. I no longer wait for the day that something great is going to happen, but find something great in every day. Even if it simply means I feel good.
When a person has been sick or in excruciating pain for nine months, getting up in the morning without it is a joyous occasion. Every day is a reason to celebrate.
Research shows that exercise reduces the risk of cancer, so I do it every day. I walk the dogs. Sometimes I feel really good and go to the gym, where I either walk on the treadmill or (on a really good day) go to spin class.
I try to lift weights afterward. My chest has suffered severe trauma, so restoring flexibility and strength is a challenge.
My gut, which used to hide from my view under my boobs, sticks out more than I would like, so I’m trying to lose it. My body shape is still strange to me, but I’m not longing yet for reconstructive surgery. I might just get used to not having to wear a bra!
Progress is slow, but it is coming – I learned that yesterday at Stanford when I got Herceptin.
Herceptin is one of the many drugs I’ve been on that can cause a loss in heart function. Lapatinib is another. And of course chemo.
Because of the danger, the FDA requires that patients on the drugs submit to echocardiograms every three months. They measure how much blood one’s heart pumps out of the muscle with each beat. (It’s never 100 percent, btw, or you’d have an empty heart, but 60 percent is ideal, I’m told. My baseline before treatment ranged between 55 and 57. It if had dropped below 50, treatment would have stopped.)
The fear of losing heart function and being forced off my lifesaving drugs is what inspired me to get up and walk when I was on chemo, even if it was just to the mailbox and back. It’s what motivates me to get up in the morning and walk my four miles. It gets me on the bike at spin class.
Keeping my heart healthy keeps me on the drugs that keep my cancer at bay.
So I got results yesterday from my last echocardiogram. My heart function actually GOT BETTER!!!! I’m now at 60 percent.
It’s an incredible development. My heart is getting stronger on drugs with the potential to make it weaker.
It’s why I know I’m going to kick this. And why the new me is going to be healthier than the old me.
I half-watched the Golden Globes Sunday night and not because I had seen any of the shows that were being honored – or if I did chemo has robbed me of any memory of it.
We had friends over so I don’t remember much of what was done or said on the show, but I remember vividly the end of the program when Michael Douglas walked on stage to present an award.
Suddenly there was thunderous applause. The jaded, self-absorbed Hollywood celebrities stood and cheered for what seemed like a very long time.
Long enough for random thoughts to run through my mind: Wow. Everyone is afraid of cancer. When someone seems to have beaten it, there is a collective outpouring of relief. Is it because genuine affection for the person, or because if that person can beat it, we think we can too? It’s human nature to find peace of mind in other peoples’ victories against disease. Written off for dead by the tabloids, there Douglas was looking strong and with a full head of hair (What kind of special chemo did he get, I wondered?).
For a moment I felt as if they were cheering for me, too, since we fought cancer at the same time. Tears welled in my eyes. Everybody who fights cancer, everyone who participates in a trial, is helping not only themselves but those not yet diagnosed. Surviving cancer gives hope to countless others.
“There’s got to be an easier way to get a standing ovation,” Douglas said as the applause died down.
That’s so true. But no other way would be as deserving.