This is one of many True Story interviews in which we talk to people who have experienced interesting, challenging, amazing things. This is the story of Vanessa and her diagnosis with non-Hodgkin’s Lymphoma at 25.
Tell us a bit about yourself!
Hello! My name is Vanessa and I currently reside in Minneapolis, MN. I’m 28 and for fun I make plush organs and blog. I grew up in North NJ, just outside of midtown Manhattan. I had six rounds of chemo from September 10, 2010 to January 21, 2011.
When did you start to feel ill? What lead you to go to the doctor?
In May 2010, I came down with a bad chest cold that never really went away. As the summer went on, I had more and more trouble breathing. I was losing my breath half way through a sentence and couldn’t keep up in my kung-fu class any more. I had a chest x-ray done which showed my heart was enlarged, I was rushed to see a cardiologist. He said I needed emergency surgery to drain fluid that accumulated around my heart and prevented my lungs from expanding and contracting. When the surgeon opened me up, there was a 23 cm mass obscuring my heart and lungs; I had an aggressive and quickly growing lymphoma.
How did you feel when you received the cancer diagnosis?
I woke up from surgery and my new husband told me that I had cancer, something we had joked about before. I was pretty dazed from the anesthesia but I had a gut feeling that everything was fine. I didn’t fully comprehend that I was living on borrowed time until I started chemotherapy four days later.
I woke up from surgery and my new husband told me that I had cancer, something we had joked about before. I was pretty dazed from the anesthesia but I had a gut feeling that everything was fine. I didn’t fully comprehend that I was living on borrowed time until I started chemotherapy four days later.
For those of us who don’t know, what type of cancer is non Hodgkin’s Lymphoma?
I had primary mediastinal large diffuse b-cell lymphoma. “Primary mediastinal” means is my tumor was located right behind my sternum. “Large diffuse B-cell” means my B-cells were the damaged cells. Your lymph nodes create two types of cells: B and T. Both are part of your immune system and help identify, destroy and flush out viruses, bacteria and other nasty stuff in your body. When I caught my cold, my B cells started multiplying quickly to attack the cold virus. They never stopped, which caused my tumor.
Non-Hodgkin’s Lymphoma is an umbrella term for all lymphomas that aren’t Hodgkin’s. Both types are fairly rare: less than 5% of cancers are lymphomas. NHL effects 7 out of 100,000 people each year and is more likely to happen to young adults in their early to mid-20s. I was the youngest person on the floor by a good 40 years.
How did you and your doctors treat your cancer?
After surgery, I was sent to the cardiac ICU to recover. Four days later, I was transferred to the chemotherapy floor. I did six rounds of an intense chemotherapy regime called Hyper CVAD. It’s broken into two cycles, A and B and every three weeks I was given the drugs that make up each cycle. The drugs they used were hard on me, so I had to stay in the hospital for four to six days per cycle. Chemotherapy targets fast dividing cells, like the ones that make up your hair and stomach lining. That’s why cancer patients lose their hair and feel sick all the time. Also, one of the drugs makes your fingertips and toes feel like you’ve got pins and needles all the time. The biggest bummer was that the DNA mutating drugs didn’t give me any super powers.
How did you deal with your day-to-day life during your treatment?
I had lost my job and I was volunteering at the American Museum of Natural History; it was hard giving that up but it was one less thing to stress over. I lived in the same building as my mom and sister, they would cook and clean for us. Being commuters, we didn’t own a car so my mom’s best friend took me to all my appointments and would treat me to lunch. My husband’s job let him work remotely from the hospital and his coworkers chipped in to get me an iPad.
I hated losing my hair but losing my nose hairs was terrible. Chemo took place during winter and without those hairs, I had a perpetually runny nose. On the bright side, I didn’t have to shave or wax. It also meant that everyone wanted to give me head rubs. Scalp massages are the best.
Did you ever think that you would die from this cancer?
At the time I tried not to think about death; it’s now that I realize I almost died twice. Apparently, if I had waited any longer, I would have died from a heart attack. My last chemotherapy nearly killed me. The effects of all those toxins add up and my body was getting weaker and weaker. I managed to pull through with few problems but I still have nightmares from then.
How did you cope emotionally with this?
My best coping mechanism was knitting. It let me ‘productively worry’, I could keep my fingers busy and fidgeting while letting my mind focus on what I was making. I had done martial arts before I was ill, so I did my best to remember what I learned about meditating, loving, and trusting my body. Mostly, I clung to my knitting and knew I couldn’t die yet, I wanted to finish the sweater I was working on.
Was there anything that surprised you about this experience?
I was really sad that some people stepped back but I had casual friends step up and help. I wore a wig twice, but it was too uncomfortable. I just let myself be bald and beautiful. Unfortunately, packs of 15 year old girls are terrible and would say nasty things when I passed by. I was also really surprised at how little attention young adult cancer patients are given in the scientific community and in the media. There were so many programs that I didn’t qualify for because I was too old or young! I’m on a mission to change that.
What advice would you give to someone whose loved one has just been diagnosed with cancer? How can we help? What should we NOT do or say?
The best help is to just be there! Call me to talk about the latest “Keeping up with the Kardashians” episode or stop by with a cup of coffee. I craved human contact and I wanted to feel like I was remembered and loved. The other thing is to just listen. You can’t cure my cancer and that’s ok. I also wanted someone who would hold me while I cried and would agree with me at how unfair the world was. And then crack a joke after! I have two infographs that you can print out and keep about what to say and what not to say over at my blog.Thanks so much for sharing your story, Vanessa. Do you guys have any questions for her? Have any of you received really serious medical diagnoses?
Thanks for sharing this story. Vanessa, you are truly inspiring! I, like many people, get too caught up in the little things sometimes. But you've reminded me to be grateful for my life and my health. Thank you, and I'm glad to hear that the treatment worked and that you're feeling better these days 🙂
Thanks, Catherine. I still get caught up in the little things, I'm only human after all, but then I stop and gently remind myself to take a deep breath. I (still) love Fred Rogers and I often think, "it's a good feeling to know you're alive." And some days, that's the only thing that matters.
I didn't see a way to comment on her blog post, but under "things to say when your friend is sick", I really like this one: If you want to talk about it, I'm willing to listen. It's always a back and forth of not wanting to remind someone of hardships, but I think we know they're thinking about it a lot anyways. It's nice to offer an ear.
This is a great and moving post. I didn't know that young adults had a hard time being covered.
Wishing Vanessa the best!
Thanks for the heads up, Allison. I'll fix that right now.
I read an article that called us the "lost generation" when it comes to cancer patients. People think about either the kids in St Jude's or old people. While those are the two largest populations, there are folks in the middle and we're kinda ignored. All of the literature I received had old people as the models and none of the advice even mentioned things like work, fertility and sex. It's written with the assumption that the patient is in his or her 70s and needs to navigate Medicare not a job interview!
Thankfully, that's slowly changing and I'm advocating for more change and acknowledgement!
You're an amazing person, Vanessa! I bet telling this story and reliving the experience is painful, but you've fought courageously and more people need to see that. You're that beacon of light for anyone going through a rough time. I'm so honored to be your friend!
Thank you so much, Mei. It's also an honor to be friends with you. Also, I read "beacon of light" as "Bacon of light." I am happy to be anyone's bacon!
Thank you for sharing your story Vanessa :). Your optimism is inspiring and definitely reminding me to look for the good in life no matter what.
Also, kudos for supporting young adult cancer/illness support programs. There is definitely a gap there and it was something I noticed when I ended up deathly ill at 21. There were so many get-togethers, parties, support discussions, activities for children, teens, mothers, seniors, etc. etc… but absolutely nothing for my age group at the time.
I definitely was part of the knitting group though :)! I don't know what I would have done without it.
I wasn't a part of a knitting group at the time, I did find that it gave me a sense of greater purpose, as silly as it may sound. It felt more "real" to me than the word "advocate" did at the time.
Really good article. My mom lives with us and she has had several types of cancer for over 34 years, terminal for the last 8. I love her perspective on life and the humor (although dark) about the ravages of cancer. Your story is both inspiring and informative about how to be supportive and kind to someone going through this, thank you!!
Thanks, Gabrielle!! It's been great getting to know you in the Starship. 🙂