Growing up, I always thought of hospitals as having a certain mystique that was impenetrable to the outside world. White-coated figures paraded through long hallways and entered doorways marked Ã¢â‚¬Å“restricted access," behind which I imagined miracles happened.
As a medical student, I continued to hold the medical world in great awe. All that changed the day that my mother became a patient. After a year of telling her primary care doctor that something was wrong, she was finally diagnosed with metastatic breast cancerÃ¢â‚¬”cancer that, by then, had spread to her lungs, her bones, and her brain.
I was wracked with guilt. I was training to be a doctorÃ¢â‚¬”why didnÃ¢â‚¬â„¢t I figure out that her symptoms indicated cancer? Why didnÃ¢â‚¬â„¢t I try to convince her doctors to look harder? Why didnÃ¢â‚¬â„¢t I know that medicine was so fallible?
Leana Wen, M.D., now an Emergency Physician at George Washington University; Photo by Associated Press
Over the next several months, I saw firsthand not only how difficult it is to navigate the healthcare system, but also how scary and unwelcoming it can be. After her cancer surgery, my mother was supposed to be recovering, but every few hours, someone would come in and switch on bright lights. There were loud beeping noises around the clock; soon, she lost track of day and night. Her providers were not bad people, but they were overworked and often disconnected from the needs of their patients.
I struggled to find the right balance between advocating for my mother and being too pushy. Actually, it was my mother who was really afraidÃ¢â‚¬”afraid that weÃ¢â‚¬â„¢d make her doctors so angry that they would give her worse care, or even fire her as a patient. She had many other concerns too, such as how to tell the rest of our family about her diagnosis, and how to take care of my younger sister, who at the time was just nine years old.
Reflecting back on the experience, I have five lessons for other young women whose lives are changed forever by their motherÃ¢â‚¬â„¢s cancer diagnosis:
Be there for her. My mother was a proud and capable woman. She was among the first class of college graduates after ChinaÃ¢â‚¬â„¢s Cultural Revolution, then immigrated to the U.S. by herself. The last thing she wanted was to feel that she was dependent on other people. But cancer can be lonely and overwhelming. Though she never asked for help, I know she was grateful that I was there to accompany her to terrifying experiences like the first chemo appointment. Even if you canÃ¢â‚¬â„¢t physically be there all the timeÃ¢â‚¬”I was attending medical school 3,000 miles awayÃ¢â‚¬”there are things you can do to offer your support. For us, it was talking to my sister and updating other family members. Be conscious not to reverse roles and treat your mother as if she canÃ¢â‚¬â„¢t care for herself; rather, offer help and be there to do what needs to be done.
Do your research. Use whatever tools are at your disposalÃ¢â‚¬”even if itÃ¢â‚¬â„¢s just an iPad. Find out about her doctors. Research her diagnosis and possible treatment options. Join online discussion groups. Not only do they offer supportive communities that you can connect with, but they can be good sources of advice. ThatÃ¢â‚¬â„¢s not to say that all the advice you find will be relevant, or that you need to read every single journal article on her cancer. But being informed will help you to understand the medical jargon and come up with questions to ask her doctor.
Become an empowered advocate. Try to go with your mother to her doctorÃ¢â‚¬â„¢s appointments if you can (if not, find another close family member or friend to go with her). Bring all her medications and other important items. Help her practice how sheÃ¢â‚¬â„¢ll communicate important details to the doctors. Prepare a concise list of questions. If she is too shy or feeling too unwell to ask questions herself, be ready to take over and advocate for her to get the best care possible.
Ask her how sheÃ¢â‚¬â„¢s doing. Many people donÃ¢â‚¬â„¢t know what to say to a patient with cancer. My motherÃ¢â‚¬â„¢s friends would see her losing her hair and becoming very thin. They would visit from time to time, but I never heard them ask her how she was doing. There were probably too afraid to ask, but you donÃ¢â‚¬â„¢t have to be. Let her know that you want to have open conversations about her healthÃ¢â‚¬”that itÃ¢â‚¬â„¢s OK for her to tell you how sheÃ¢â‚¬â„¢s feeling. If you live far away, schedule regular phone calls or Skype conversations. Sometimes, you will hear things that really surprise you. For example, I found out that my mother was really hating this one medication regimen and having terrible side effects, but she was doing it because she wanted to prove to us that she was strong.
Take care of yourself. ItÃ¢â‚¬â„¢s easy to forget yourself in a stressful time like this. Remember that you wonÃ¢â‚¬â„¢t be of any help to anyone if you are ill, and your mother will be even more worried if you become unwell. Get enough sleep. DonÃ¢â‚¬â„¢t forget to exercise. Figure out your own support system. This is an incredibly difficult time for you, too, and you will need to draw upon the support of your other family and friends. Throughout her treatment, there will be good times and bad times, so develop and solidify support systems that will benefit you both.
After eight years of fighting, and multiple rounds of chemotherapy, surgery, and radiation, my mother lost her battle with cancer. I think about her every day. I miss her terribly, and wish she were there to walk me down the aisle at my wedding and to cheer when my sister received her college diploma.
Perhaps my most important lesson to other young women is to cherish the time you have together. A cancer diagnosis is a wakeup call that our time is limited. I feel fortunate that I had those eight additional years to spend with my mother, to really get to know her and talk with her. Her illness made me recognize medicineÃ¢â‚¬â„¢s limitations, and also made me appreciate the gift of lifeÃ¢â‚¬”and the irreplaceable bond between mother and daughter.
Leana Wen, M.D. (second from right), with her mother Sandy, father Xiaolu, and sister Angela
Leana S. Wen, M.D., is an Emergency Physician and Director of Patient-Centered Care Research at George Washington University. She is the author of the best-selling book, When Doctors DonÃ¢â‚¬â„¢t Listen: How to Avoid Misdiagnoses and Unnecessary Tests. As the physician expert on WomensHealthMag.com, she will be contributing articles on how you can empower yourself to better health. Follow @DrLeanaWen.