My world started to turn upside down in January of 2019 after starting to exercise and trying to lose weight. At first, I thought I had pulled a muscle in my leg. The cramping continued to increase and turned into radiating bone pain. I went to get an x-ray to make sure nothing was broken. There were no broken bones or fractures, so they sent me on my way.
After weeks of not being able to sleep, begging and crying to my husband to cut my leg off, I went to my orthopedic doctor from years ago when I had a slight tear in my meniscus. He felt my leg, said everything felt fine, and he sent me on my way. I was extremely upset. My concern wasn’t being addressed. I sought out and scheduled a second opinion. This doctor again said it was most likely a muscle, but that they would do an MRI to check. Even though I got a scan, I was unhappy with the doctor’s demeanor and decided to see my father-in-law’s orthopedic surgeon for the results.
This doctor was great! He came in ready with a plan and said I likely just needed cortisone shots. However, he was going to go check the imaging results. He came back in and immediately told me they could not see me, and I had to be referred to a doctor in Pittsburgh, Pennsylvania. No further explanation was given.
After reading the results, I was left knowing I had necrosis of the bone and soft tissue along with an abnormal bone marrow signal of my right femur. At that time, I had no idea what that meant, but that’s all I knew.
Two more months went by. I had multiple imaging scans, three needle biopsies, and an open biopsy that left me on crutches for two months. I received the call that I had cancer when I was alone about five months after the pain started. It was the scariest call of my life. I had no idea who to call first.
After two oncologists, I landed at the best doctor I could have ever asked for. I had an extremely rare case of diffuse large B-cell lymphoma (DLBCL) and not once did I ever feel like a burden.
I finally got the call to come in and start in-patient chemo in hopes of getting my pain under control after nine months of agony. However, after getting my bloodwork back, we found out I was pregnant. After four years of trying, my husband and I received our miracle baby.
They immediately shut everything down and did an ultrasound in the morning. They found that I was between two to five weeks pregnant. My oncologist found out at the same time I did because they live-streamed the images from my ultrasound to a projection screen in a conference room. We decided to delay treatment until all options were discussed.
After talking to maternal-fetal medicine doctors and multiple oncologists researching everything they could, we decided to wait on treatment until my second trimester. At that point, I could start Rituxan® immunotherapy treatments, and there would be little impact if any to the baby. It was another few months of pain, but I was going to do anything to have a successful pregnancy. My doctor was shocked and excited, but that made me trust him even more. They were there for it all.
My pregnancy was relatively easy, and the baby did well. However, a couple of months prior to delivery, COVID hit the U.S. It brought so much uncertainty about whether I would be able to be with my husband during the labor and delivery process. I was scared. I was already a mess having cancer, but the pandemic pushed my anxiety to another level.
My son was born via C-section after 52 hours of labor at 36 weeks old. He was unfortunately born without an immune system due to his B-cells being suppressed from the immunotherapy treatments. However, he was perfectly healthy aside from that.
His immune system recovered around 6 months old. I started treatment shortly after. It was so hard being a new mom and going through chemotherapy. I’d never wish that on anyone.
Through it all, The Leukemia & Lymphoma Society (LLS) was there with me. My family got to attend a Pirates game to accept a donation check from Koppers on behalf of LLS. We attended a Penguins game in a suite with other cancer patients. I had received a couple of grants from LLS to help with medical and non-medical bills. Without LLS, I don’t know if we could have done it.
Caitlyn
diffuse large B-cell lymphoma (DLBCL)
