A Life Interrupted 2007

[Adah]

Jaouadis chronicling her experiences with cancer for the New York Times Well blog in a column called "Life, Interrupted." "Cancer, she writes, "has forced me to pause my life at a time when my peers are just beginning theirs."

"It's a period in your life where everything is about establishing your independence. You know, everything is about trying to make it on your own two feet, trying to live independently from your parents. And unfortunately with the onset of a life-threatening illness, you know, those circumstances ... take away a lot of those things that you've spent your life and certainly your college career working toward. ...

"What I wasn't prepared for were the medical challenges that face young adults with cancer, specifically fertility in my case. ... No one mentioned fertility to me, but a few days later, as I was once again Googling information about my disease, I realized that the chemotherapy treatments that I was scheduled to receive in one week were most likely going to make me infertile.

"And that came to me as a huge shock. Cancer didn't have to be permanent; in my case, I'm lucky that my cancer is curable, but infertility was. And it was the first time I realized that cancer wasn't just something seasonal; it wasn't something that was going to pass with the summer. It was something that was going to change my life forever."

"We had a debate with my doctors and my family as to if it was OK for me to delay my treatments and if [future fertility] was something that was really important to me, which at the age of 22 is a really difficult question to answer. Of course, I've kind of always assumed that someday I would have a family, but children really weren't on my mind at the time.

"So it was awkward territory, to put it lightly. ... I had to decide with my parents and my boyfriend if I wanted to fertilize my eggs with his sperm or just choose my own eggs. ... It's an unconventional topic to bring up, you know, in the first six months of meeting someone. And we actually decided on the embryos, but a social worker at the fertility clinic advised me against it for legal reasons and future, you know, obstacles that could arise.

"So in the end I actually did go with the eggs. I'm happy to say I have about 10 eggs somewhere in a freezer in Midtown Manhattan. So I don't know if that's comforting, or I'm not sure. But I guess it's something that I'll deal with when I'm ready to. But I feel very fortunate to have had the opportunity to even undergo the fertility treatments. I know a lot of cancer patients either aren't informed by their doctors of the possibility of doing fertility treatments or don't have time to do so. So I feel very lucky."

"I think another aspect of being a young adult with cancer is that most of your friends, hopefully, you know, have never had to experience life-threatening illnesses themselves. ... So a lot of my friends had no idea how to respond and found it really difficult not just to find the right words, but sometimes to find any words at all.

"And I was shocked to discover that although many of my friends were truly wonderful and supportive, some suddenly became distant or weren't present at all when I was diagnosed. And for my first month or two in the hospital, I felt really angry and really hurt. ... And it took me a few months, until I saw ... a childhood friend of mine who'd been diagnosed with stage three testicular cancer when I had been 18 years old and a freshman in college to realize why it is that some people react so strangely to a cancer diagnosis. And in seeing this friend, I remembered my own reaction, and I remembered feeling so afraid when he called me and shared his diagnosis with me.

"And following that phone call, I, you know, I sat down and tried to compose an email, and I just didn't feel like I had the right words. I couldn't find the perfect word, so I said nothing. And I wasn't there for him at all during his cancer treatment. And I tried to remember that, and it's helped me forgive and understand the reactions of certain friends in my life and to realize that generally it's not that people don't care. It's that they're afraid or that they don't know what to say.

"But one thing I've learned to tell my friends is that you don't have to find the perfect words, but you do have to say something. And I think one of the highlights of this year has been apologizing to my friend with testicular cancer. He understood, and he said, 'I know that you understand now.' "

Listen in as adolescents and young adults (AYA) from the Cancer Center at The Children's Hospital of Philadelphia discuss their experiences with cancer diagnosis and treatment in this podcast, AYA Cancer Chat: Life Interrupted. You can also download these podcasts in the iTunes Store.

Chemo Brain: Cancer therapy causes many side effects, but forgetfulness may not be one everyone is prepared for. In this podcast, cancer survivors and current patients talk about what chemo brain means to them and the annoying ways their forgetfulness interrupted their lives.

Staff Relationships: Why do cancer survivors and patients have strong relationships with some of their doctors and nurses, but not others? What can healthcare team members say and do that may help during cancer treatment? Young cancer survivors answer these questions to help others feel empowered to get what they need during therapy.

Appearance: Yes, hair loss is typically part of cancer treatment, but there are other ways therapy can affect how you look. Young cancer survivors and patients open up about the physical scarring of cancer therapy to help newly diagnosed AYAs (and those moving beyond their battle with cancer) learn to support one another.

Ask the Psychologist: Adolescent and young adult (AYA) cancer survivors and patients talk with CHOP Cancer Center psychologist Lisa Schwartz, PhD about their pressing questions and concerns: how to talk with healthcare providers about the effects of cancer treatment, infertility and dealing with a secondary cancer diagnosis.

Cancer in College: College is supposed to be a time for new beginnings, new friends and new independence, not a new cancer diagnosis. Our young adult patients talk about the impact of cancer diagnosis and treatment on their college experience, and how they coped with unexpected challenges.

Friendships: Teenagers and young adults with cancer discuss how their friendships were impacted by their cancer diagnosis. Hear how they maneuvered the complicated task of bringing their friends along for the ride of diagnosis and therapy, when and how they chose to share what was happening in their lives, and much more.

We try to hold onto relationships, to our loved ones. Then our parents die. We mourn, we remember. We gather in the circle of life and watch growth and decay and the succession of generations. The very nature of life is change.

I know that I am facing the end of my life. I will not have the opportunity to create my masterpiece. My life was a work in progress. Now I have a disease that has taken over and progresses every day. It is telling me to let go. Let go of my life. Let go of my ideas. Let go of my thoughts. Let go of my body. Let go of all attachment. Allow myself to say goodbye.

My first social media decision following my diagnosis was to cut and run. I deactivated my Facebook account. Looking at pictures of my healthy precancer self stirred uncomfortable emotions; it was a reminder of a life past, of all that had been taken from me.

I began to reconsider my Facebook silence. Slowly, I started to reveal bits and pieces of what I was going through. First, I posted a picture of myself wearing a pink scarf that covered my head. Next, a picture of me wearing a big blue hat, my long brown tresses clearly missing. And later, a picture of me nearly bald, with just a sprout of very fine baby hair. I had put myself out there. And there was no going back. I now officially had cancer, on Facebook.

From The New York Times, May 10, 2012 2012 The New York Times. All rights reserved. Used by permission and protected by the copyright laws of the United States. The printing, copying, redistribution, or retransmission of this content without express written permission is prohibited.

If you like this show, please check out our new podcast, My Unsung Hero! And to learn more about human behavior and ideas that can improve your life, subscribe to our newsletter at news.hiddenbrain.org.

Karina began writing her story, Life Interrupted during her first remission from Hodgkin Lymphoma in 2014. She continued to write for the next four years, through aggressive treatments, surgeries, hospital admissions, a further diagnosis of Non-Hodgkin lymphoma, a stem cell transplant and her eventual palliation. She knew that her story could help others and worked tirelessly up until a few weeks before she passed in September, 2018, to complete it.

Throughout these years of treatment and relapse, Karina began her degree in Psychology and worked as a mindfulness therapist to help others who were struggling. Karina passed away before she could finish her Psychology degree but through palliation at home, she persisted in completing her book so that she could share her journey with others in the hope that they might find comfort, compassion and courage in a journey only those who tread the path can ever truly know.

In 2016, when Karina was faced with a diagnosed relapse of Hodgkin lymphoma, her newfound courage to speak up for herself when she felt unheard, led her to seek a second opinion. This decision brought her to Dr. David Joske, whose whole person approach to cancer treatment changed the course of Karina's entire journey and led to a realisation of a misdiagnosis. Karina did not in fact have a relapse of Hodgkin Lymphoma as diagnosed by her original team, but rather a much rarer form of lymphoma called T-Cell Non-Hodgkin lymphoma. So, it was here, in the hands of Dr. Joske, that Karina realised the importance of sharing her story - of how finding a team that listens and connects with you, walks beside, not in front of you, that respects this illness as yours and not theirs, can change the way one travels this difficult road - no matter the outcome.

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