Undifferentiated Pleomorphic Sarcoma Grad- Nicole
Name: Sparkly Survivor aka Nicole Body
Age at Enrollment: 27
Major: Stage 3, Undifferentiated Pleomorphic Sarcoma
What were the primary symptoms you experienced prior to diagnosis? I actually did not have any symptoms from the cancer. My gallbladder was failing and caused symptoms prompting me to go to the doctor and the sarcoma was found resting on my pancreas in the ultrasound/CT scans.
What symptom(s) lead you to go to the doctor? Nausea, reflux, and severe stomach pain
Courses completed: I had a laparoscopic surgery performed to remove my gallbladder and most of the tumor, followed by 4 rounds of chemotherapy, and then the Whipple Procedure was supposed to be performed but in the OR, no cancer was found.
What was your hardest moment (or moments) and how did you get through it/them? There were many challenging moments through treatment. The first things that pop into my mind are the day I had my CVC inserted (I was not expecting to be awake for that), all of the needles that had to be used in addition to that for blood draws or IVs, and when the doctors found a blood clot in my right jugular vein. The way I got through those moments was a TON of prayer, humor, and talking with friends and family who loved and supported me through the journey.
What advice would you give to someone who is newly diagnosed? What advice would you tell them to ignore? For someone who is newly diagnosed, I would want them to know that you are incredible and you can fight this. You have been given a spirit, not of fear, but of power and love and self-control and you are not alone in this battle. I HIGHLY recommend journaling each day (or every day that you can) and being real and honest about how you are doing. I will save that journal forever and look back on it often. Others may try to compare you to other situations (good or bad), but I recommend focusing on battling the cancer you face. Remember, statistics are for groups and you are an individual.
How did your family and friends respond? There were a lot of different reactions. Friends and family either weren’t involved and came out of the wood work and walked the entire journey with me. My advice is not to let the ones who react differently than what you expected upset you (because you are likely to have ones that will). Everyone is just trying to handle this in the best way they know how whether it be “right or wrong”. Be grateful for those who are standing in the fire with you and draw near to them.
Are there any bad platitudes/bad recommendations that you’ve heard from other people regarding your diagnosis? I was told not to floss and that was the worst advice I listened to. I ended up getting food caught in my gums and had probably the worst 72 hours of my life. After going to see my dentist and he fixed it, I flossed very carefully and was fine.
When you feel overwhelmed or anxious, what do you do? When I feel overwhelmed or anxious, I do multiple things. I spend time in prayer (the Serenity Prayer always helps me), I write out my thoughts as that is my outlet, and I will talk with my husband because he is so supportive and helpful when I get stressed. Another great thing I did during my journey was read through the Psalms. It’s comforting to know that people in the Bible weren’t doing “great” all the time and they were people just like us crying out to God. Just knowing that God was listening to me brought me peace even in the struggle.
What do you wish more people knew/understood about the type(s) of cancer you were diagnosed with? Sarcoma has a high rate of recurrence so even though I currently have no evidence of disease, there is always the thought of recurrence (and I think EVERYONE who has faced cancer wants others to understand this as well). I want to help create awareness of this cancer since it is so rare as many that I have spoken with don’t know much about it (including me before I was diagnosed).
Have you created any meaning out of this experience? If so, what was it/how did you do it? Cancer changed my life. Forever. And I can’t express my gratitude to God enough for allowing me to be alive right now. I learned to let go of “control” because there are things in this life that we can’t control and anxiety only wears us out and exhausts us from an unknown that may or may not occur. I have been able to realize that I was way too attached to my hair, not invested enough in my relationships, and didn’t appreciate the many blessings God has given me until things were taken away. The whole “you don’t know what you’ve got until it’s gone” story. So now that I am able to spend another day here, I want to make the most of loving God, loving and serving others well, and appreciating the blessings that I do have.
How did/do you find joy during this experience? I found joy in my faith, family, friends, and making the effort to count blessings each day. My circumstances weren’t changing so I could either be miserable or be thankful in it. Each day became a precious gift. Also, I spent a lot of time with my parents’ golden retrievers and they brought so much joy!
Since your diagnosis, what new belief, habit or behavior has most improved your quality of life? My faith has been everything to me in this journey. When you get that close to dying and know that eternal life is secure in Christ, I realized that no matter what happened/happens to me, I am blessed with everything I need. I made a Bucket List and have started working on completing that and that has been incredibly fulfilling and exciting. Nutrition and exercise never mattered much to me and since my diagnosis, I have been investing time and energy in both and it has been wonderful. My heart is to inspire others to live their lives abundantly and gratefully, loving well and making a difference. That has been my heartbeat since cancer.
Did you learn anything about yourself or your life? If so, what was it? I learned that I was not living my life fully. I was going through the motions in most areas of my life and that I had put so many aspirations on the backburner. “Life” got in the way and bills had to be paid and I stopped working towards things that I knew I was called to do. That has since changed and I want to live life to the fullest. So many goals, dreams, and callings are not that far away with a little extra time and effort. When you live life like you’re dying you realize just how precious moments are. I had to almost die to get to that point. And my life goal is to help others do that before they get to that point or to start right now!
If you could write anything you wanted on a billboard in NYC’s Times Square that would reach millions of people, what would it read? John 3:16