Hard Questions

Dear Marisol


 

I know you don’t remember me. We met when you were just a baby. Now that you’re older, I want to tell you a story about your mom you may not know.

When your mom became pregnant with you, it was a joyous occasion. But strange things started to happen. Your mom noticed that she was bleeding into the toilet bowl. She was told pregnancy would make her gain weight, but the opposite was happening. By her second trimester, her maternity clothes were so baggy she had to exchange them.

She went to see a gastroenterologist and told him about the bleeding. He looked at her pregnant belly, ordered no additional tests, and said he would look into the bleeding if it persisted after her pregnancy.

But that was 5 months away. In the meantime, her symptoms got worse. As you probably know by now, your mom is proactive. She sought a second opinion and then a third. Three different gastroenterologists dismissed your mom. The visits were brief; as soon as each doctor noticed she was pregnant, each deferred dealing with her – even though rectal bleeding and weight loss are in no way explained by pregnancy. Even though a colonoscopy could absolutely be safely performed during pregnancy.

A few months later, she gave birth to you. You were a healthy baby and she and your dad cried. They were so happy to meet you.

The next day, your dad stayed with you while the doctors performed a colonoscopy on your mom. To everyone’s horror, the camera saw a huge colon tumor. While the gastroenterologists had been reassuring her during her pregnancy, the tumor was gnawing through the wall of her colon and invading nearby organs.

She was wheeled on a gurney from the maternity unit to oncology. That’s where I met her.

Dr. Ilana Yurkiewicz is a fellow at Stanford (Calif.) University.

Dr. Ilana Yurkiewicz

She asked a lot of good questions, none of which we could answer. Her heart rate was in the 140s, and she developed fevers. Her cancer put her at risk for a serious infection called an abscess, and it took the option of chemotherapy off the table.

We went back and forth on what to do. We got lots of experts involved, and we went through the possibilities. We realized something terrible. There was no cure anymore. There were only trade-offs.

I will never forget the meeting between all of these doctors, your mom, and a Spanish interpreter. We gave your mom a best case scenario: 1 year.

Holding her necklace cross in one hand and your dad’s hand in the other, she repeated something over and over. The interpreter couldn’t hold back tears as she translated in a soft voice: “Please don’t let me die. Please don’t let me die. Please don’t let me die.”

We were all working so hard, doing our best to find a way out for her. Meanwhile, you stayed in the newborn nursery near the maternity ward. Every day your mom would go back and forth between oncology and the nursery to hold you.

Finally, we proceeded with surgery. It was an enormous, delicate, risky operation that took more than 10 hours. There were colorectal surgeons, urologists, and gynecologic oncologists. They scooped out not only the tumor but also your mom’s uterus, her ovaries, her bladder, and part of the abdominal wall. There was just so much cancer.

But your mom made it through the operation. Two days later, she married your dad in her hospital room while a nurse held you. She called it the best day of her life.

But we were still so worried. Everyone in the oncology unit had grown to love your mom, and we knew this was not a permanent fix. She was discharged from the hospital to rehab to get stronger. The plan was to see her in clinic and consider chemotherapy.

I usually keep a list of patients I want to follow even after I’m no longer their doctor. With your mom, I couldn’t put her on any list. It was too personal; I was too invested. I knew what the outcome would be, and I couldn’t bear to see it.

I never forgot your mom though. I decided to become an oncologist, and I thought about her when I met patients, especially young women, who had been dismissed by other doctors. I vowed to be the change as I listened to them and diagnosed them and treated them. I vowed to be a part of the system that would do better.

One day, 3 years after I met your mom, I was rotating in a colon cancer clinic and looked at the schedule. I recognized a name. Was it possible? It had to be someone with the same name. Could it really be your mom?

It was. By this time, she had finished chemotherapy. The goal was to keep the cancer from growing, but it somehow did more than that. Throughout your mom’s entire body, the cancer was gone. Her stoma was reversed, and she had gained back all the weight she lost. You were there too, defying instructions telling you not to touch the medical equipment. You hugged your mom’s leg as she made plans for a routine follow-up in 6 months.

I want you to know this story about your mom because, for the rest of your life, people will tell you what to think and how to feel. They will think it’s their business to tell you when to be worried, they will talk like they know better, and they will try to make you feel small for speaking up. I don’t have a perfect solution for all of this, except to say: Don’t let them.

But I’m not worried about you. If you grow up to be anything like your mom, you will be okay.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

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