Patient with Cancer Shares Tips for Being Your Biggest Advocate

Life is like a Mad-Lib, and Jennifer White is taking control of what she can fill in the blank spaces.

The Atlanta-based cyber security consultant was diagnosed with chronic lymphocytic leukemia (CLL) in January 2019. In July of that same year, White, a Boston native, came to Dana-Farber. She currently comes to Boston four times a year for visits.

For White, there is nothing more important as a cancer patient than being your own biggest advocate. She believes that her constant questions, search for second opinions, and knowledge of her own body has tremendously affected her journey.

Here are her words of advice to other patients who may be going through a similar journey, as well as words of wisdom about cancer prevention.

Get your physical every year.

White had no symptoms when she was at her yearly physical. Finding out about her CLL diagnosis was nothing short of total shock, after it was discovered that her white blood cell and lymphocyte count was much higher than the normal range.

“My doctor came in and said, ‘Hey listen. I don’t want you to be mad at yourself. I don’t want you to be mad at me, but I’m 99 percent certain you have CLL,’” she recalls.

Looking back, White sees how the data from her past physicals were valuable: They helped her doctor recognize the potential warning signs of CLL, and for Dana-Farber to conclude Jennifer had been dealing with CLL for five years. Without that information, White notes she still might not know she had cancer.

Treat your cancer as a business problem and build your team.

“I think a lot of times, people tend to treat things differently in their personal life than they would if it was a business problem or a task they’re given at work,” White says. “Sometimes, people in general don’t feel they have the power to ask a question of a doctor.”

When she was diagnosed, White focused on the task of creating her team.

“This is my team that I’m building; I’m going to be the one that manages this team,” White says. “I need to find my quarterback and my players and bring them all together.”

The team is not only made up of the doctors and nurses that work with White directly, but her friends and family, who play a crucial role in supporting her.

Be okay with not understanding the ‘why.’

White couldn’t understand how she was diagnosed with CLL. However, that type of thinking proved to be fruitless for her.

“The ‘why’ is in the rear, but I have the control to live positive and look positive in the outcome of what is ahead,” she says. “Control what you can control, don’t let it control you.”

However, letting go of the “why” and staying positive is not easy. In fact…

It is a journey to positive thinking.

“You get sad about it, but you have to figure out how to find the positive,” White says. “I don’t have control over my blood fighting CLL, but I am a fighter.”

Finding the positive, White says, is something that takes time.

“It’s almost like grief. There’s no one size-grief fits all. Your cancer journey can’t be defined by a playbook. It’s going to be different from everybody’s,” she says.

When White finds herself struggling, she holds onto the goodness of others — such as the people who donate money to cure cancer or leave her a kind word.

“I consider them part of my team; we’re all in it together. Sharing my story has been the most vulnerable thing I have ever done, but then I think ‘you’re fighting cancer, you got this,’” White says. “The response and support I have received keeps me positive and lets me control my own narrative.”

Validate your sources.

Once she was diagnosed, White got caught in a whirl of CLL-related Google searches and other online “noise” that left her feeling confused and defeated.

White’s remedy is to instead research selectively, and to go beyond just Google research. It is also about getting second opinions about treatment.

Treatment isn’t always initially necessary for CLL patients. Before she went to a Dana-Farber specialist, another doctor told her White was on the verge of needing treatment, when this was far from the case. This is one of the reasons White believes in patient self-advocacy.

“Think big. If you were accused of a crime, you would get the best criminal attorney you could,” she notes. “Cancer is no different. You just have to look at it the same way. Find the best doctor you can.”

Lastly, White’s number one piece of advice boils down to one simple truth:

Find your journey and how you’re going to take it and just be you. That’s it.

During her first appointment with Jennifer Brown, MD, PhD, White sat for over an hour as her questions got answered.

“She can put things in a perspective that I understand,” White said. “It’s so much more than a doctor-patient relationship. She just has a very comfortable way of asking the right questions.”

From joking with nurses, to receiving in-depth email updates, White says she has experienced a whole new world during her “watch and wait” at Dana-Farber.

“I’ve got a Rolls Royce in Dana-Farber, and that speaks to everybody from the garage attendant to the CEO and everything else that permeates through there,” she says.

White cannot control the fact that she has CLL. Like a Mad-Lib, that part of her story is predetermined. However, through her vocalization, her outlook, and determination, White is picking up the pen to create a story that is all her own.

4 thoughts on “Patient with Cancer Shares Tips for Being Your Biggest Advocate”

  1. I have a rare cancer called Myxoid Lipo sarcoma. Had chemo and radiation treatments. Radiation didn’t shrink tumor. Still there and surgery is whats next they say. My choices aren’t anything I wanna do but I’m scared nervous and just don’t know what to do. The Dr at Dana Farber I’ve seen tells me only way to be cancer free is remove my right leg and part of right pelvic area!! OMG NO! Other way to save my leg won’t get all the tumor and he said it’ll for sure grow back and very aggressively. ???? NOW WHAT??? I’m only 62 and don’t wanna die, don’t wanna lose my leg either. Not just leg also pelvic area right side.
    Second opinion he said I can get but I’ve heard they’re the best right there so….
    I’m feeling lot of pressure from them because it’ll be two months August 16 th since last treatment. I guess it’ll start growing again after then??????
    I just wanna be in my own home with my cat Casper. I live alone. Nobody’s even given me information on what’ll happen after surgery IF I do it. ?? I’m just lost. Scared as heck. Just wanna be home and this all gone. God please help me, I need a miracle ???????

    • Hi Veronica,

      Thank you for reaching out. We are so sorry to hear of your situation and being faced with having to make very important decisions. We have shared your blog with our Patient/Family Relations Office; they may be helpful for you to speak with for guidance and suggestions regarding next steps. They can be reached at 617-632-3417.

      Wishing you all the best,
      Insight Editors

  2. My hair my not have super long right now but I am getting my hair cut today for my sister in law who has breast cancer. I know cancer sucks but together we can make a difference and stand next to have cancer .STAND UP FOR CANCER !!!

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