Our beautiful, amazing, fearlessly strong mother, Terry, was diagnosed with ovarian carcinosarcoma on July 18, 2018, at the age of 59. It was a shock to everyone, including her healthcare team.
The first, or really, the most apparent symptom was a persistent pelvic pressure. A pelvic ultrasound revealed several masses on both ovaries and her fallopian tubes. The technician suspected a malignancy, though her doctors optimistically believed the masses to be benign cysts. Regardless, surgery to remove the ovaries and fallopian tubes was scheduled for a couple of weeks later. The procedure confirmed that the masses were not cysts after all; it was cancer and it was aggressive. A second, more invasive surgery would be needed to remove her uterus, followed by chemotherapy.
On December 27, 2018, our bad-ass mom completed her sixth cycle of chemotherapy—a combination of carboplatin and paclitaxel. It was a strangely poignant way to end the year.
We could have never imagined or prepared ourselves for the news we received that day in July. Time stalls, time flies. You’re terrified, you’re sad, you’re mad. Life becomes so incredibly delicate. However, throughout the journey, a constant for our family was love and communication. We cried a lot. We hugged a lot more than we used to. We all became very vulnerable. But that vulnerability made us all so much stronger. Because we talked openly about how we were feeling, we had more time to feel ‘normal.’ We had more time to laugh and feel hopeful and grateful because we were working through the pain and fear together.
Despite how dark many moments were, my mom overcame them. I wanted her to share her story because I knew her experience might give someone else the comfort and answers she was so desperate to find herself.
On New Year’s Eve 2018, a few days after finishing her last chemotherapy treatment, we sat down together and I asked her a few questions (and then, more recently, I asked her a few more).
What’s something you know now that you wish you knew when you were diagnosed?
I know now that I was right to question the pelvic pressure I was having. I wish I had paid closer attention to my body before and listened to some earlier signs that I realize now may have been symptoms. I can’t help wondering if I could have caught the cancer in an earlier stage.
What has helped you along your journey?
The support I’ve received from friends, but especially family, has been my lifeline. I can’t imagine going through this journey alone. I am so blessed to have never had to go to any doctor or chemotherapy appointments without someone by my side. FaceTime with my grandchildren and family who live across the country is invaluable. It’s also so warming to have family and friends randomly checking in on me, through texting and email. I know that finding the right words to say must be hard for people sometimes, but it’s comforting to know that I’m being thought of.
What is the right thing to say to someone with cancer?
It feels good just to know someone is thinking of you. Just a “Hi, how are you?” or, “thinking of you.” Giving you the opportunity to say you’re good or you’re not, with no obligation or pressure to continue the conversation. Just to know you’re on someone’s mind is uplifting. It was also good to hear that I was in people’s prayer groups. Knowing that even strangers were putting positive thoughts and energy out there for me was very comforting and touching.
What was the most challenging part of these past six months?
The most challenging part, and still is, is to remain positive. I know the importance of positive thinking in my treatment and recovery, but it’s difficult to not let those negative thoughts and fears slip in.
What would make you happy right now?
I’d be so glad to be somewhere warm, looking at the water, experiencing a beautiful day. That would make me so happy!
[Note: A family vacation to Jamaica was taken in March 2019. It was incredible!]
What kind of side effects did you experience from surgery and chemotherapy, and how did you manage them?
I’ve had two surgeries. First the removal of my ovaries and fallopian tubes, laparoscopically. And then a hysterectomy because one tumor that was hiding behind my uterus. The second surgery was a major one and the recovery was very uncomfortable and lasted for weeks.
The worst side effects from the Neulasta and Taxol were the bone and joint pain. That was almost unbearable. OxyContin and marijuana helped. I learned to get ahead of the pain to make it more tolerable. It would usually start the next evening after chemo, and last for about five days.
[Note: My mom has a medical marijuana card and uses the brand Ilera. There are four variations to choose from, ranging from light and lively to relaxing and sleep inducing. In the middle are strains that helps with anxiety and even one for pain. These two, and the one for sleep, are the ones my mom has used the most. She found that the topical lotion really helped to alleviate the bone pain in her feet, legs, and elbows.]
Nausea was also a side effect that I learned to manage by alternating two nausea medications, Zofran and Compazine. I didn’t expect to experience neuropathy in the tips of my fingers and toes, but it is a common side effect. The neuropathy didn’t start until I was about halfway through treatment, after my third infusion. I am managing it with Neurontin and Vitamin B6. It helps, but it has not disappeared. I’m hoping that most of it will dissipate with time, but that’s not guaranteed.
It’s been difficult at times to not have hair. Not having to shave, however, has been wonderful! But losing the hair on my head has sometimes made me feel really sad. It’s the most telling part of my journey. It tells everyone that I’m going through cancer. But that has also opened the door to some very kind comments from strangers who have gone through a similar journey. Those moments were extremely heart-warming, and it was encouraging to see someone on the other side of this illness living what seems to be a normal life.
I manage the hair loss with a wig but mostly with colorful scarves. It’s fun to have a new accessory, but I’m looking forward to new hairstyles.
How do you cope with the stress that this diagnosis brings?
When I feel anxiety and stress, I turn to my husband or children to talk me down from my dark place filled with negative thoughts. I focus on the fact that I am currently cancer-free and acknowledge that there will be more medical advances made to help me keep cancer at bay. I remind myself that positive thinking will help keep me healthy and in a good place. I remember not to waste time feeling negative and to look forward to each day. I embrace those I love and the memories we’re currently making, and I make plans to look forward to.
What are you most proud of?
I’d like to think that I have been going through this journey with positivity and grace. I try to go about my life as ordinarily as possible. I attend yoga and Pilates classes whenever I’m up for it, and I always try to look my best. It just helps me feel better.
Is there anything you would have done differently?
Again, I can’t help but wonder if I could have been more proactive in finding my cancer.
What advice would you give someone who was recently diagnosed with cancer?
I feel so blessed to have a progressive medical team behind me. I would advise to do your homework and ask trusted physicians and friends for names of oncologists. Don’t be afraid to discuss your illness—you might get some important advice. I would suggest getting a second opinion, just to verify that you’re following the right course of action. I found it comforting to know that I was making the right decision.
Stay close to family and friends. Don’t isolate yourself; you need all the support you can get. Most importantly, this is a hard one for me, stay positive and try to keep your daily life as normal as possible.
What was the best advice you were given?
The best advice was probably not to refuse help when you need it. Don’t try to do things alone. Also, to not hold back your emotions; it’s okay to break down.
How has cancer had a positive impact on your life?
Cancer has forced me to take a breath and appreciate all of life—don’t sweat the small things. I’ve also decided to not let negative things into my life. Eating mindfully and exercising have become more important as well.
It’s New Year’s Eve and you’ve completed chemotherapy. How are you going to celebrate?
We’ve decided to burn one of my scarves as a symbol to commemorate the end of my chemotherapy treatments and the beginning of a new year. I am planning to celebrate with family and friends!
What does burning a scarf symbolize for you?
Burning the scarf symbolizes the end of chemo and the beginning of hair growth!
What is your New Year’s resolution?
My New Year’s resolution is to take care of myself and do all I can to be cancer-free. Eating right, exercising, staying positive. I plan to continue acupuncture and learn to meditate. I plan to be more appreciative of the love that surrounds me on a daily basis. I am truly blessed. [Note: My mom was seeing an acupuncturist to help manage constipation and pain, which again, thankfully, really helped.]
NOVEMBER 2019 UPDATE:
As of February, my mom has been participating in a clinical trial at Jefferson University Hospital in Philadelphia, Pennsylvania, and she is thriving! Her most recent scan was clean, and we couldn’t be more grateful. I decided to ask her a few more questions.
Looking back, would you change your response to any of these questions?
The only response I would change is the answer to, “What would make you happy right now”. In terms of my health, it would make me happy to continue to receive CT scans showing that I am cancer-free. I am fortunate to be currently enrolled in a clinical trial and potentially receiving two different drugs that could be working to keep the cancer at bay. I experience nausea daily, and therefore, believe that I am indeed receiving at least one of the drugs.
Do you have any additional advice for someone beginning a similar journey?
I am currently part of two different exercise studios, not because I’m an exercise nut—I’m far from it—but it helps to keep me interested in continuing to exercise when I have options and can mix it up. Exercise helps a great deal, not only to make me feel physically stronger, but also emotionally stronger. I highly recommend it.
I try to eat right and stay positive. It’s a lot easier now to be positive when I have continued to remain healthy. I know that I am fortunate. I was, and continue to be, most grateful for the love and support that I receive on a daily basis from family and friends. I can’t imagine going through this alone. You need the strength and positivity that only other people can sometimes give you.
Stay busy and fill your days with things that make you happy. It helps me a lot to have trips and visits to look forward to! I want to continue to make memories with those I love.