Survivor (Roxy)
Sometimes we don’t talk about things because we think certain topics might make people feel sad or uncomfortable. I never intentionally share this information, but I do talk openly about it if I think someone else can benefit from my experience. I’m digging deep tonight because Kara and I are doing something we are really proud of with our blog. This topic will benefit others… in more ways than one. Here goes nothing!
Most people don’t know this, but I am a cancer survivor.
When I was 11-years-old I was a healthy 5th grader. I played kickball with my friends, went to dance classes three times a week, and even got to be a junior bridesmaid in my sister’s wedding. Life was good. There were no real symptoms except that I seemed more tired than usual. My mom was a worrier, so she instantly started looking for signs of illness. She found swollen glands on my neck. We called our family physician, Dr. Macri, who happened to be best friends with my dad. I literally received a house call that same day. His inspection of my glands warranted a blood test the next morning that showed an elevated white count. From there, he ruled out everything from strep throat to mono. After two weeks of taking an antibiotic, my white cells continued to be elevated. The probability of me having cancer was small, but most everything else had been ruled out. So the next step was a biopsy of the glands on the right side of my neck. I still sport a two inch scar here. This biopsy was benign... Thank God! But there’s more...
Dr. Macri still wasn’t satisfied with the numbers on my blood work. He called an oncologist at Riley Children’s Hospital. My parents and I found ourselves making the 3.5 hour trip to Indianapolis by the end of that week.
Once we located the oncology wing we went in to look around. Riley seemed gigantic compared to the local hospitals I had visited. I remember being scared, but at the same time there was a sense of comfort. I looked up and saw huge stuffed animals tucked into alcoves all over the hospital. I couldn’t help thinking how adorable they were, and this reminded me of my bedroom at home which also housed several stuffed animals and cuddly things. Every wall was painted with a beautifully colored, kid-friendly mural of some sort. Located throughout the hospital were massive saltwater fish tanks that held some of the most amazing aquatic animals I had ever seen. This place was unlike any hospital I had ever seen. I loved how it was totally geared toward kids. Riley Children’s Hospital was awesome and wonderful, but also terrifying at the same time. The more we walked through the halls of Riley, the more I have to admit I was a bit shocked at what I saw on that first visit.
Beyond the stuffed animals, murals, and fish tanks, there were medical staff members pushing kids in wheelchairs. There were kids in wagons toting IV poles. There were kids with walkers, accompanied by adults who, gauging by the look of exhaustion and worry on their faces, must have been their parents. I saw kids with missing limbs and lots of kids with scars. The freshly bandaged two-inch line on my neck seemed like a paper cut compared to the scars these kids had. There were lots of kids with NO hair. Of all the things to have been afraid of, this was most terrifying to me. My hair at the time was thick, blonde, naturally curly and what most people would call beautiful. I made up my mind. I told myself I was not staying in this place. I just wanted to go home and play with my friends. There was nothing wrong with me. I was just a little tired. I didn’t belong here... but I did.
There WAS something wrong... and Riley Children’s Hospital is exactly where I belonged.
After more blood work, chest x-rays, and a CT scan, we had an answer. I’ll never forget how we got the news of my diagnosis. After about six hours of various testing and lots of waiting, my new oncologist, Dr. Provisor, called us into a room. He introduced us to a team... a TEAM of doctors that would treat my condition, because apparently one wasn’t enough. I remember him saying, “Roxy has Hodgkin’s Lymphoma. It is a type of cancer that affects the lymph nodes which is why her glands are swollen.” The minute I heard the word “cancer” I felt the room spin. My stomach collapsed like I had just been kicked in the gut. My dad’s eyes filled with tears, and my mom’s first reaction was to wrap me in a hug and hold on tightly. While she held me, my dad hugged her. It was like the doctors disappeared and it was just the three of us for a few minutes. I literally crumbled onto the floor and asked for the restroom because I knew I was going to vomit. Once I regained my composure I went back into the exam room, but I truly don’t remember much of what was said next. “Set her up for surgery right away... won’t be able to attend school... most likely treated with chemotherapy and radiation... we won’t be able to tell yet... she will probably lose her hair, but it will grow back... there is a 50/50 chance of survival, maybe better... hopefully we caught it early... surgeons will be able to tell more.”
My life changed forever that day.
We scheduled my surgery for two days later, and then we were headed back home to Mishawaka, on another 3.5 hour drive where my entire family (5 siblings and their spouses) were waiting for the news. There were no cell phones back then, so telling them in person gave me the unwanted opportunity to see the expressions on their faces. Scared, sad, confused. They tried to support me, but they didn’t know how. No one is equipped for something like this. Along with my brothers and sisters, Dr. Macri came over that night. He was so positive! He assured me that he KNEW I could beat this. He was convinced that the surgery would conclude the cancer was caught early. This meant my chances of survival would increase to around 70%. Dr. Macri talked to me privately and told me that my attitude, and my belief system would be as important as the chemotherapy and surgery. He also talked to my parents privately, and behind closed doors I could hear my mom saying how scared she was. She had good reason to be scared.
You see, the crazy part of this story is that I am named after my mom’s sister, Roxy. My Aunt Roxy died before I was born. She died from Non-Hodgkin’s Lymphoma! I had just been diagnosed with Hodgkin’s Lymphoma (similar, but not exactly the same). The irony is unreal. Mom was mentally preparing for another death to this God-awful disease. She had watched her sister suffer, and now she was afraid she would have to go through it with me. This absolutely crushed her.
To make matters worse, all of this happened right before Christmas. On December 9th, I traveled back to Riley. The night before the big surgery, my parents and I stayed in a hotel that gave special discounts to families of patients. The next morning we were at the hospital by 6:00am. I had a major surgery. Doctors took biopsies of my liver, removed my spleen, and cleared my abdomen of any cancerous lymph nodes they saw. The scar on my stomach is about nine inches long. The surgery took about three hours, and I was walking (baby steps) the next day. I tried to take 10 steps, which was the goal they set for me. I remember quitting after step number three. You don’t realize how much you use your stomach muscles in everyday life, until you can’t use them any more.
Interestingly enough, after I met with the team of oncologists and surgeons, I was sent to a nutritionist and a spiritual/emotional team (Chaplains and social workers). Looking back as an adult, I see that this is such an amazing way to treat a disease. Science, nutrition, and faith all working together. Over my 13 day stay, I learned and RE-learned so much. I wanted to eat, but I never had an appetite, and I.V. vitamins can only do so much for your body. Nutritionists taught me how important food would be especially as I started treatments. I learned that chemotherapy destroys healthy cells, along with the cancer cells, so it was up to me to create new healthy cells through a diet of vegetables, fruits, proteins, and whole grains. As an 11 year old kid the last thing you desire is a big plate of green leafy vegetables, but I ate them, because I knew it would save my life. Around day 5 of my stay, I was walking down the entire hallway and back with less assistance. I was praying the Rosary daily with the hospital Chaplains. I was eating soft foods and regaining my appetite a little.
We had a private room for the first few days. My mom slept on the couch four feet from me, and my dad slept in the hotel next door where he would make business calls for a couple hours each day. Other than that he stayed with us, and he paced. He walked to and from the cafeteria a lot. He made food runs, and force fed everyone on the hospital staff. Pizza, boxes of chocolate, sandwiches; whatever he could do to make them happy and take his mind off of our situation. I knew how my dad’s mind worked. Dad was sucking up to the doctors and nurses so they would take excellent care of his little girl. They did.
Mom was busy feeding me ice chips, reading handmade cards from my classmates, and brushing my hair while I still had it. Our two week stay at Riley marked the beginning of my mom becoming a huge “germaphobe.” My immune system was weak, so I wasn’t allowed to touch the cards my friends had made. No one, and I mean NO one, could come near me if they sneezed or coughed. My mom turned from worrier to warrior and served as my personal bodyguard. MY body, my health, my nutrition, and my wellness consumed her life. She no longer had one of her own. She never left my side. Doctors gave my mom recommendations on special cleaning chemicals to use once I was allowed to return home. She purchased them by the case so we never ran out. Lysol spray was used several times a day on door knobs, telephones, refrigerator handles, you name it! Once I was healthy enough to attend church I wasn’t allowed to shake hands during the Sign of Peace or hold hands during the Lord’s Prayer. Normal germs were considered the kiss of death when you didn’t have a spleen. Plus once you add chemotherapy on top of that, I was pretty much sick all of the time. After the first round of chemo, I ended up back in the hospital for a week with pneumonia.
My doctors in Mishawaka monitored my blood counts between treatments, but my parents and I both agreed that the 3.5 hour drive to Riley was worth the trip. Everything there was geared toward children. They had tutors who helped with school work. They had clowns, balloon men, and frequent famous visitors like athletes from the Indiana Pacers and the Indianapolis Colts. My favorite part was that Riley Hospital had Nintendo games in the Infusion room. I couldn’t wait to get my hands on the controllers, but I didn’t realize how sick the treatments would make me. I didn’t even feel well enough to play Mario Brothers. I didn’t have a Nintendo at home, but my friends did so this would have been a huge treat for me.
Each time we traveled for chemotherapy treatments I became sicker. My dad drove to and from Indianapolis. I laid across the back seat of our Lincoln Town Car and tried to sleep through the ride, but sleep never lasted long before nausea took over. My mom rode backward in the car and held large Ziplock bags for me to vomit into after the treatments. After I got sick she would zip them closed so we didn’t have to ride home with the smell in the car. Nausea gets worse on road trips. After treatments I usually had about 24-36 hours of vomiting and then I would start to feel better again. The worst trip ever was on my third round of chemo. I got sick 17 times on the 3.5 hour ride home. I thought I was going to die. Was the drive worth it? We revisited the decision to have treatments at Riley and each time we decided that the pros still out weighed the cons. It was the best place for me to be.
The staff was caring, competent and committed to my treatment. Plus the “lab rats” as we called them, were much better at sticking a needle in my tiny veins that were already weak from the chemotherapy. When I had blood draws at the hospitals in Mishawaka, it took the technicians three or four sticks with a needle before they could find a vein. At Riley, they got it on the first poke every time. I refused to have a PICC line, or an I.V. port, put in my body. It seemed so permanent, and I wasn’t planning on having chemotherapy forever. The PICC line would have saved me a lot of physical pain, but in my mind I was doing what Dr. Macri told me. I was showing mental and physical toughness and keeping a positive attitude. I told myself I didn’t need the PICC line, because I would be healthy again soon. In my mind, I was already beating the cancer.
I remember being in my fifth month of chemo. I was set to have six months and then more scans to determine if radiation was needed. I walked in and greeted my favorite lab tech. Her name was Marilee. She looked rough like a truck driver, but she was as gentle as could be. She did everything she could to find a vein, including calling other technicians, but after sticking a needle in my arm for the fourth time she said, “I’m so sorry Roxy, but I think you should consider the PICC line.” This is when I lost it.
I did NOT want another surgery to insert a PICC line. I did not want a PICC line period. I wanted to be done. No more needles. No more treatments. No more car rides with Ziplock bags full of vomit. No more baseball caps. No more looking at my exhausted parents. No more medical bills piled up on our dining room table. No more neighbors coming over with prayer cards, and casserole dishes. NO MORE any of it! It was over. I could “mind over matter” a lot of things, but I couldn’t change the fact that the veins in my hands and arms were shot. They could no longer get the medicine into my body, and I wasn’t having another surgery. I would literally rather die.
I remember crying like a baby, and that’s when Marilee said, “You’re a pretty tough kid.” This made no sense to me since I was sobbing. My parents were trying to convince me that it wouldn’t be so bad to have that PICC line put in. They reminded me that I only had three more treatments total. Then Marilee repeated, “You’re a pretty tough kid. We don’t normally do this, but how do you feel about me placing an IV needle in your foot?”
Ugh!!! I didn’t even know that was possible.
It was! And she was right, I was a pretty tough kid. I took the IV in the foot rather than having surgery for a port. This was a good decision on my part, because two weeks later, by some miracle of God, the veins in my arms had enough rest that they were able to hold an IV again without collapsing. Somehow I made it through the last two treatments.
After the last round of Chemo, I went down for tests that would determine our next steps. One of the doctors on my team said he thought radiation would be necessary. I was praying he was wrong. I did my part. I ate the vegetables. I took the medicine. I rested. I stayed away from sickness whenever possible. I just wanted to be healthy and have a normal life. After blood tests, a chest x-ray, CT scans, and scans whose names I can’t even pronounce, my lead oncologist, Dr. Provisor, stepped out into the waiting room where we had been sitting for over two hours. Usually a nurse would take us back to an exam room. The waiting room was full of at least 10 other families with sick kids who were also waiting for treatments and test results. My parents both stood up as he walked into the room. I just sat there looking up at him with my Mickey Mouse ball cap pulled over my head where my hair used to be. I remember loving this man who saved my life, and I’ll always remember what he said next.
While one hand was wrapped around a huge stack of folders containing x-rays and scans, Dr. Provisor used his other hand to give us the thumbs-up sign. He smiled the biggest smile I’ve ever seen and said, “We got it... All of it. Your scans are clear.”
This time it was me who cried and my mom who collapsed into the chair. We hugged so tightly. My dad crossed the room to shake the doctor’s hand, which quickly turned into a full on embrace between two grown men. My mom said aloud, “I feel so happy. It’s like this huge weight has been lifted off of my shoulders.” It was another moment where I felt like it was just my family in the room...The rest of the world disappeared, and I was sort of lost in this good news. Blessed.
What brought me back into reality was the sound of applause. I swear to God, the other 10 families in the waiting room were clapping for me. For my good news. For good news that they hoped would one day be theirs. These were mostly strangers with whom we had bonded while worrying... and praying... and healing... and waiting.
Riley Children’s Hospital was my saving grace. I loved this place for more than just the doctors, the nurses, and the excellent lab technicians who thought out of the box. I loved it for the healing that took place there; for the other patients, their battles, their stories and the community itself.
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Introducing “Feel Goods”-
The reason I shared this story is two-fold. First, I know I’m not the only one who has battled cancer, so if you are fighting some form of this disease I hope you can connect to the advice my doctor gave me. No matter what battle we face, our attitude and belief system can be a powerful part of our healing. Second, I’m sharing to honor an amazing medical facility and make people aware of a turn Kara and I are taking with our blog.
After 6 months of writing and connecting we feel like we have a large enough following to make a difference. We recently started a business, simply to pay for cost of running the blog itself. We revisited our “why” and decided it was never about making money, but simply about making connections. One day someone said to us, “Your logo with the heart and cross is really special...You should brand that and put it on a shirt.” So we did!
Each of our guest writers will receive a shirt or a Wait Training item of his/her choice as our gift to them for sharing their stories with others. We are building a community of support and encouragement. In order to pay for those, we are venturing out into the small business world selling items we would purchase ourselves. After we cover the cost of running the website, and gifting the guest authors with items, we will be donating money to organizations that have made a difference in our lives. Kara was gracious enough to let me choose first. I'm choosing Riley Children’s Hospital. Now you know why.
Riley Children’s Hospital will be the first of many organizations Kara and I will donate to on behalf of our blog...Wait Training. You can check out our new link called “Feel Goods” under the main menu of our site.