2018 News

Finding Love and Laughter in a Battle with Cancer

#
By VHA
2018 Heart of Home Care Guest Speaker Manjusha Pawagi

In 2014, at only 47-years-old, Manjusha Pawagi was diagnosed with a very aggressive form of leukemia. Prior to the diagnosis, Manjusha had already led several “lives”—first as a journalist, a mother to twins, a children’s author, a lawyer, and a family court judge—before her most recent experience as a cancer survivor and author of the memoir, Love and Laughter in the Time of Chemotherapy.

Fortunately, this story has a happy ending. Despite one in a million odds of finding a stem cell match and enduring the high-risk treatment, Manjusha didn’t just live to tell the tale. She lived to share her story in all of its messy, vulnerable, funny and touching glory.

We were lucky to sit down with Manjusha to talk about her experience before her keynote presentation at VHA’s 13th annual Heart of Home Care Awards on April 3rd, 2018. She touched on her patient experience, the love and support that kept her going and her unique relationship with her “one in a million” donor.

Why did you decide to write about your very personal experience and share it with the world?

When I was sick, a friend signed me up on [the health journal website] Caring Bridge. It’s a way to keep family and friends updated and they can directly respond to you. I quickly realized that the more honest and specific I was, the more helpful their responses were. This was so energizing and therapeutic for me and it was a way to process what I was going through. These posts were like my diary quoting overheard conversations with roommates and what doctors were saying to me. Initially, it gave me something to focus my energy on and was a great way to keep in touch.

Because it was so well received, my book is an extension of this honesty. You know that saying when life hands you lemons, you make make lemonade. Well, what if life hands you a bag of s$%t? What can you make of out that? Turning something terrible into something good, was my way of coping.

Your book includes a broad range of emotions. Even the title includes “laughter” in it, which is not really something we connect with cancer and chemotherapy. Why was it so important to include humour in the book for you?

At first I thought no one wants to hear some depressing, dire tale. But in retrospect, there’s actually a lot of humour in my experience. I know some of my reactions to cancer were unusual, but people found that funny and comforting and that made me want to write about it. This isn’t traditional humour, but it’s quirky and it’s satire. I thought it would be illuminating. This is what doctors are saying, but this is what patients are hearing. If you can turn something black into something humorous, then I think you’ve succeeded.

There are moments in the book of obvious vulnerability. When the fact that you are a judge and public figure are almost irrelevant. Can you talk a little bit about that and what that felt like for you?

When I first started writing I was worried because of my career choice. I wondered if I should be revealing such personal information. My test was if I’d be ok with someone in my courtroom reading it? I decided it was more than ok because people want to know that the person making decisions can actually relate to them. It’s good to realize that everyone feels pain, anger and fear and I’m not just in a position of power making decisions without empathy. I thought it may be comforting for the families I work with to know that I’ve been through such heaviness and despair.

I was reminded of a quote that I heard way before my diagnosis by an English judge a few hundred years ago. “Fill the halls of justice with good men [and women], but not so absolute in goodness as to have no understanding of human frailty.” I know that this experience has made me a better and more compassionate judge.

For the most part it seems like you had very good care throughout the chemo and the stem cell transplant. What do you think makes a difference between an “okay” patient experience and a “great” patient experience?

I had such amazing care. I feel so lucky to be Canadian, from Toronto, with access to the best hospitals and brightest minds. From my nurses, to hematologists, to surgeons, and to home care workers—it was incredible! It’s not just about delivering healthcare, it’s about so much more. I had a terrifying nightmare that I was dying, rushing to the light, the whole thing. I woke up gasping and horrified and a nurse put her arms around me and said, “you are not alone.” That stayed with me. One of my nurses that cared for me at home would ask for book recommendations to teach his daughter about life and love. We would chat and laugh and talk about books and that was such a joyful part of my recovery. It’s these connections that really shine!

I think the major difference between an okay patient experience and a great one is constant, supportive care. It was also the hope. I remember a doctor once said, “you’ll dance at your children’s wedding.” To me this meant so many things. You’ll grow old, you’ll be healthy enough to dance, your children will be healthy and they’ll grow up and be happy. He was offering me so much in one sentence and it was everything. I clung to that. My odds weren’t good, but the optimism, hope and support (beyond the exceptional care) I received from my team made all the difference.

Can you talk about how important the people who supported you on the journey were?  Namely your mother and your husband. What did they bring to your experience?

I wouldn’t have survived without support from my family and friends. My husband is the real hero of this story. Knowing that my kids were so well cared for, I was able to focus on myself and my recovery. My kids didn’t miss a thing—piano lessons, sleepovers, school trips! He kept things normal and made sure they were not traumatized by the whole experience. My amazing mother came twice a day to bring me breakfast and dinner for five months. I say she gave me life twice. Once when I was born and once when I was sick with cancer.

What advice would you give to someone who has just been diagnosed with cancer?

I don’t know if this is true for everyone, but I found such comfort in sharing and openness. There was a time where I know I was struggling with depression. The emotional pain of an endless recovery was worse than the physical pain I experienced in the hospital. While I knew I could technically get out of bed, I couldn’t physically do it. You need to talk openly and honestly about what you’re worried about, reach out to people and don’t sugar coat what you’re going through. Otherwise, things can get pretty dark.

On the flip side, what advice would you give friends and family who have just learned a loved one has been diagnosed?

For friends and family who’s loved one has just been diagnosed, be their support. People want to help but sometimes they don’t know what to do—so ask directly! Maybe it’s a specific book, fresh fruit, (which is hard to find in hospitals) or a relaxing play list. The most amazing thing that my community did was set up a dinner schedule. My husband and children didn’t have to cook for the entire five months I was in the hospital. Another friend wrapped 30 little gifts for me to open each day. Just know that every gesture counts and matters. After my recovery, some people said I’m sorry I didn’t reach out, I didn’t know what to say. So send a card and say just that! While cancer can’t be cured by encouraging thoughts, support and positive thinking make the days bearable.

After your recovery, you were able to meet your stem cell donor in person. What was that like and how do you describe the connection you feel with him?

We are family. Literally. The stem cells that made his blood have also made all of mine. His blood is circulating through my body. It’s miraculous! One year after the transplant, we both agreed to meet each other. I couldn’t compensate, match or make up for what he did. All I could do was say thank you and I wanted to do that in person.

But, what do you say to someone, what do you give them? Then I decided on a framed photo of my family in Mexico in the pool, smiling and happy. When he has bad times he can look at this picture and say, “This is the family I saved. See how happy they look!” It’s not just one life. He saved my husband, my children, my parents and my friends. What an impact. I feel like I gave him something too. I know he feels so lucky and blessed that he was able to save my life. The connection is deep. I didn’t just get my life back, I got a whole other family out of it.

RSVP to see Manjusha Pawagi and to attend the Heart of Home Care Awards event now.