I met Lauren as I have connected with many other cancer buddies, through the powers of social media. Lauren and I had three things in common: Cancer being the obvious one. We both were very fortunate enough to do fertility preservation before chemo. And both of us are happily engaged to fantastic men who have stood by us during the chaos. (I think she will agree with me that it is nice to have something like planning a wedding as a distraction from everything cancer-related.)
Please enjoy this wonderfully candid interview where Lauren shares the depths of what it is like for a young adult to have cancer. From emotions, side-effects of treatment to the different kinds of help she received ...and the new meanings she found for her life. Her inspiring outlook is nothing short of amazing.
NAME: Lauren Ann Trigge (soon to be Roy!!!)
TYPE OF CANCER / OFFICIAL DIAGNOSIS: Nodular Sclerosing Hodgkins Lymphoma
CURRENT AGE: 24
AGE AT DIAGNOSIS: 22
HOMETOWN: York, Maine
OCCUPATION: Currently working part time retail, but I have a kindergarten - 8th grade degree that I’m waiting to use, hopefully this fall!
HOW DID YOU FIND OUT YOU WERE SICK? WHAT LED UP TO YOUR DIAGNOSIS? When I was student teaching in 2010 I found a bump on my neck, just above my left clavicle. It got bigger and more sore as time went on. It was misdiagnosed as a lipoma and a swollen thyroid before I pushed to have imaging and a biopsy done. I also had very itchy skin. I was itching my legs raw while I slept. I was definitely tired but it was my senior year of college and I figured everyone else was just as tired. I also had one sinus infection after another and they never seemed to clear up completely.
IS THERE CANCER IN YOUR FAMILY HISTORY? Not in young adulthood to our knowledge. Although it is hard to know if someone only a few generations back died of Lymphoma, because Doctors could have called it something else.
WHAT WERE YOUR FIRST THOUGHTS WHEN YOU WERE DIAGNOSED? I actually got sent home from work on my results day because I was a nervous wreck. My heart knew. The results had been sent to California for a ‘second opinion’. My doctor called as soon as I got home and asked if I was alone or if I wanted to call someone to come over before I spoke with him. I begged him to just say it because I was ready to throw up. When he told me my body started shaking and I got very cold. I was so confused. I was angry that the bump had been there for months as different doctors dismissed it. I was so sad for my family to have to hear the words “ I have cancer” come out of my mouth. I felt guilty that they were going to have to travel this journey with me. And I was mad that when I had searched my symptoms online months before, WebMD had said Hodgkins Lymphoma.
HOW DID YOUR FAMILY REACT? They were wonderful. They surrounded me with love. My Mothers’ sisters took turns visiting us. My Mum took off work to be with me. My sister and baby niece took me to every chemo appointment. My sister dressed her up in a new ‘ I love Auntie’ outfit for every one! When you have fresh, new, healthy life to make you smile, everything gets a little bit easier.
HOW DID YOUR FRIENDS REACT? I have a beautiful silver bracelet that belongs to my 5 best friends and I. We got it when we graduated high school and it has our names on it. We pass it along to each other when times get tough for one of us. Within 2 days of being diagnosed, there it was, on my doorstep. What was hard is that some friends really stepped up but a lot of people disappeared. After all, what do you say to a 22 year old fighting for her life? I now try to think of cancer as a Darwinian approach to weeding out who is really worth your time.
HOW LONG DO YOU THINK CANCER HAD BEEN IN YOUR BODY? I think it probably began when I was 21. That is when I started getting sinus infections that I couldn’t fight off.
ARE THERE ANY SPECIFIC CHALLENGES YOU BELIEVE DIFFERENTIATES YOUNG/YOUNGISH ADULTS COPING WITH CANCER AS OPPOSED TO PEOPLE WHO ARE DIAGNOSED LATER IN LIFE? For sure! We are too young to pay for this on our own but old enough to want to try to do it all by ourselves. It’s an awkward time to have to start leaning on your family again because you feel as though you just weened off of them! Many young adults with cancer still need their parents insurance. ( In the states we can stay on until we’re 26). It’s difficult to have to make life changing decisions about preserving their fertility when you are in a new or immature relationship. Young adults have little or no savings and student loans that are NOT easy to put into deferment. They are the youngest at their oncologist offices. They have young children that need to be taken care of. We are the lost generation of cancer patients and we most definitely have unique needs.
DID YOU CONTINUE TO WORK AFTER YOUR DIAGNOSIS? Yes. I worked at a preschool. My boss’ husband had NH Lymphoma so she was super understanding, as were the rest of the teachers. I would work every other week- on my off week from chemo. When I got radiation I would work only mornings. When I started stem cell preparations, I had to stop working completely because my immune system was weaker and my energy level dropped significantly.
DID YOU HAVE SURGERY? IF SO, WHAT DID IT CONSIST OF? Two separate lymph node biopsies in my neck, a port placement and removal ( for administering chemo), egg harvest, and a Hickman line placement ( for harvesting stem cells and administering high dose chemo).
WHAT HAS YOUR TREATMENT CONSISTED OF? I have had 6 months of ABVD chemo (All of you breast cancer peeps know the big A in that one, our mouth sore giving friend Adriamycin), a month of daily radiation to my chest and throat, three months of conditioning ICE chemo, an autologous stem cell transplant (This is when you harvest and freeze the cells responsible for making red and white blood cells and platelets so that you can get high doses of chemo. Normally, ‘high dose’ would wipe out your bone marrow and you would not have an immune system... Read: Bubble boy!!! ...but after the high dose chemo, you get your stem cells back and some shots to support your cell growth, and your immune system is able to bounce back), and another month of daily radiation to my axilla - fancy name for armpit.
WHAT HAVE BEEN THE MOST DIFFICULT SIDE EFFECTS YOU HAVE HAD TO COPE BECAUSE OF YOUR TREATMENT? After a stem cell transplant your immune system is very weak. You have to wear a mask and gloves if you go out in public. We are super germaphobes now, but it is stressful to have to worry that much about germs because sometimes it means that we can’t do what we want to, when we want to do it. Fatigue is also a really big factor in my life right now. It is hard to be gentle with myself as far as my energy levels go. I have to constantly communicate with my loved ones about how I’m feeling so that they don’t mistake my fatigue for something else, like boredom or disinterest.
IF YOU HAD TO DO IT ALL OVER AGAIN, WOULD YOU HAVE CHANGED ANYTHING? I would have started seeing a therapist muuuuuuch earlier in the game :) And of course, hindsight is 20/20. Sure I can say: “I would have pushed to go to Dana Farber and see the experts earlier” but it really doesn’t help to do that. It’s also so theoretical. Who knows if anything would have worked differently!
WHAT HAS BEEN THE MOST DIFFICULT PART ABOUT THE CHALLENGE OF COPING WITH CANCER? Guilt. I feel so guilty that my fiancé is on this journey with me. I feel horrible that I may not be able to have his children. I hate having my family worry for me. I don’t like that they have to take care of me because I know it is so life consuming for them. Our lives are cancerCANCERcancer all of the time.
HAVE YOU STRUGGLED WITH SLEEP OR FOUND IT DIFFICULT TO FULLY RELAX? Quite the opposite now. I need about 10-12 hours of sleep a night! If I don’t get it I feel tired and achy. It’s hard to schedule a life around that much sleep. During and after my hospital stay, it was difficult to stay asleep because they take your vitals every 4 hrs and you soon get into the habit of waking up often. It only took a few weeks to be able to sleep better. I also had trouble sleeping when I was given Lupron to protect my fertility during ABVD chemo. It jolts you into menopause - hot flashes, night sweats and all. Lastly I had trouble sleeping because of muscle pain while on Neupogen because it felt as though my skin hurt all of the time. I had to try a few different prescriptions to help sleep but finally found one that worked! And when it did, it made my days so much more comfortable, too.
HOW DO YOU HANDLE THE STRESS OF FOLLOW-UP APPOINTMENTS AND/OR SCANS? I always try to remind myself what is TRUE. It is so easy to get caught up in worry and let fear cloud your judgement. I talk myself through what I’ll do if I get bad news. It will suck, I will cry. But I’ve gotten through it before... many times. I will put back on my armour and head into my next battle. My family will stay with me. They will be by my side. I’ve really had to relearn worry. Contrary to popular belief, if you worry about something, it could still come true. Let it wash through you. Acknowledge it, and move on, making way for another emotion to come. I also really like to play out what it would be like to have my doctor give me good news. What he’ll say, how I’ll act. Mostly I do this in the car so that people don’t think I’m nuts for crying happy tears.
THERE ARE SO MANY TOUGH DECISIONS TO MAKE WHEN DEALING WITH CANCER. WHO HAVE YOU BEEN ABLE TO TURN TO FOR ADVICE? I have a great therapist who I saw weekly during treatment. At first I thought since she hadn’t really had extensive experience with cancer that she wouldn’t be a good fit. What I didn’t realize is that a therapist can treat a cancer patient just as she would treat anyone with PTSD ( post traumatic stress disorder). Cancer and treatments are your trauma. We work through something new every week. We often have to revisit issues because a solution that worked 3 weeks ago is no longer doing the trick. It’s helpful to be able to turn to her because she is a third party- she will not be scared by my deepest darkest fears as my family would be. I can unload unto her all of my worries without concern of her well-being.
WHAT HAS BEEN THE MOST HELPFUL FORM OF SUPPORT YOU HAVE RECEIVED? My best friends and my family threw a benefit called Live. Love. Lauren before I went in for my stem cell treatment. That combined with another yard sale fundraiser, my home town raised close to $20,000 for me. It made it possible for me to be out of work for 9+ months, paid for preserving our fertility ( along with Livestrong’s Fertile Hope program... which is AWESOME), helped pay co-pays and deductibles, travel expenses to Boston, and paid for my meds... I am ever so grateful of the kindness shown to me by everyone who donated.
SOMETIMES PEOPLE CAN UNINTENTIONALLY SAY THE WRONG THING. HAVE YOU EXPERIENCED THIS? IF SO, HOW DID YOU HANDLE IT? UGH. The dreaded “It’s going to be okay”. Every time someone says that to me I want to punch them, and I’m not even a violent person. Listen, it is the opposite of okay. I’ve got frigging cancer and am fighting for my life while my friends are busy going to bars and worrying if their new flat iron is really as good as their old one. Usually it’s best to be honest and say, “you know what? It certainly doesn’t feel okay, so can you just assure me that you’ll be there for me, no matter what?” It’s not their fault. No one knows what to say when cancer rears it’s ugly head.
HAVE YOU LEARNED ANY BIG LESSONS ALONG THIS JOURNEY? I think I’ve learned the meaning of life... my life, that is. It’s picnics on the beach, sun warming my skin, the smell before it rains, a kiss that makes my belly flip, holding a newborn, cry laughing, the feeling of grace after church, that tingly feeling up and down your spine when you get a massage, having your kitty greet you with a mew and purr...
HAVE ANY OF YOUR PRIORITIES IN LIFE CHANGED SINCE CANCER? ALL of my priorities have changed.
WHAT MAKES YOU FEEL BETTER, GIVES YOU JOY AND HOPE? Turning my fears into prayers. For example, when I’m nervous about a scan I pray for patience, strength, and courage. It’s an opportunity to transform energy. I also hold within my prayers visions of hope - love, teaching, the relief that a clean scan will give, what Tim and I’s future house and babies will look like... :)
HAVE YOU ATTENDED ANY SUPPORT GROUPS? WHY OR WHY NOT? I’ve attended a Young Adult cancer support group about 40 minutes away. It’s a bummer that there isn’t one closer. I always feel stronger after seeing other people like me. It’s also the only place where its appropriate to laugh out loud about cancer. When I laugh about it with cancer free friends or family they sometimes feel as though it’s not something not too fool with, as though it would be bad luck or something... but other cancer patients have similar senses of humor as me and it feels good to let loose with them. Sharing stories of pulling the cancer card is always a good hit at the group!
HAVE YOU PARTICIPATED IN ANY ALTERNATE THERAPIES OR METHODS BENEFITING YOUR OVERALL WELL-BEING? IE: ACUPUNCTURE, MEDITATION, HEALING TOUCH, REIKI OR OTHER? All of the above! As I said, cancer is a trauma, and you need to heal your soul along with your body.
HAVE YOU CHANGED ANYTHING IN YOUR LIFESTYLE SINCE BEING DIAGNOSED? I’ve tried (and failed) to cut refined sugars out of my diet. I’m a work in progress.
ANY TIPS FOR OTHER SURVIVORS? You’re NOT ALONE. Listen to the Mumford and Sons song, Timshel. Reach out and there will be a hand to take. Connecting with others will make you feel so much better.
ANY TIPS FOR THE PRIMARY CARETAKERS? Communicate and ask for communication. When you find out what you can do to help a cancer patient feel comfortable you will feel more in control of the crazy journey of cancer.
ANY TIPS FOR FAMILY AND FRIENDS OF CANCER SURVIVORS? Offer a specific way that you can help. Say: “ I’m going to the grocery store, what do you need?” or “Which day would you like me to come to chemo with you?” Saying that you’re there for someone isn’t enough in this situation. They are overwhelmed and humble and it is awkward to ask for help, so make it easy for them to accept it.
YOUR MOTTO / MANTRA OR FAVE SAYING:
Fluctuat Nec Mergitur. It’s a Latin phrase that means: “ She is rocked by the waves but does not sink” I’m waiting on my Dr.’s ok to get it tattooed!
I also love the quote: “ I will hold myself to a standard of grace not perfection”
YOUR WEBSITE WHERE READERS CAN FOLLOW YOUR STORY:
My blog for young adults with cancer is: http://graceundercancer.wordpress.com/
I made it to tell other young adult survivors what they can do next in this crazy mixed up cancer journey. I want them to share their story along side mine and together I hope to learn, grow and move forward.
Thanks so much to Ashley for this interview. Reflection can really help open your eyes! Much love, my survivor sister.