The story of my cancer diagnosis while pregnant

Yes, I’ve been diagnosed with cancer. Non-Hodgkin’s B-Cell Lymphoma. Specifically, Burkitt’s Lymphoma. Yes, I am also pregnant. Since my diagnosis, I’ve had many friends ask me how I knew to go to the doctor. They want to know what symptoms might be cause for alarm in their own situations. The path leading to diagnosis was frustrating for me because I felt like it took a long time. It’s easiest for me to sort out the details leading to my diagnosis when I break it up into months. This was my path to diagnosis.

October-

One Saturday morning, I simply could not get out of bed. I slept for 14 hours straight, and then still struggled to wake up. When I finally worked my way out of bed, my underarm was very sore, to the point where it hurt to move my arm. It was so strange. With my painful underarm and my sudden exhaustion, it seemed like something was wrong.

My underarm continued to be sore for the next few days, and I had a Dr. appointment already set up for an unrelated reason.  While I was there, I brought up the pain in my underarm and after an exam, she told me I had a swollen lymph node and that I should expect it to go down in the next few weeks. 

November-

The pain in my underarm came and went from day to day. I noticed that my swollen lymph node wasn’t going down, it was actually getting larger. I made another doctor’s appointment so she could look at it again. Agreeing that it was a little larger than normal, she ordered an ultrasound.

This was a busy month. I got a positive pregnancy test, which you can read about here.

Caleb and I also planned a Thanksgiving Cruise as a much needed getaway. The cruise was a full week, with every other day on land and then on sea. On our land days, I would come back to the boat completely exhausted, which I assumed was just because we had a busy day. On the days at sea, I was hardly able to leave the bed due to exhaustion. All three days that we spent on the boat, I slept until dinner time, ate, did an activity, and then went back to bed. Honestly, I could not get myself out of bed. I kept wondering what was wrong with me.

December-

Right after the cruise, I was able to get the ultrasound of my underarm and met with the doctor for the results about a week later.

She came into the room with a packet of papers and said, “I’m glad you raised concern about the lump under your arm and pushed the issue, because the results I have are pretty concerning.” She gave me the packet of papers and told me about the oncologist I would soon be seeing. I left her office as soon as I could and cried the rest of the way home.

I met the oncologist, Dr. Sharda, soon after. He was very kind and reassured me that everything would be OK. I remember as he examined the lump under my arm. He said, “Oh yeah, that’s lymphoma!” I remember thinking that we shouldn’t jump to conclusions and get more testing done first.

He arranged for a surgical biopsy and I felt tortured that the surgeon wasn’t available for another month. I wanted to start treatment and get rid of whatever this was! However, no treatment plan could begin until we knew exactly what kind of lymphoma this was (I was still hesitant to believe this was really lymphoma.

Dr. Sharda also arranged for me to receive a port. I questioned if this was necessary when we didn’t even have test results. He said there was no doubt in his mind that this was cancer and would require chemotherapy. That was hard to hear. My port placement was scheduled for January.

January-

My long-awaited surgery finally came and by this point, the mass under my arm had grown quite a bit. It was also painful. The surgeon removed a large portion of it for biopsy. By the way, the mass grew back very quickly, even larger than it was before the surgery. Answers could not come soon enough. I was always exhausted, struggling to function, and could see the mass growing larger, which really frightened me.

My port was placed, which was a terrible procedure because they keep you awake for it, but since I was pregnant they didn’t give me any medicine for muscle relaxant. It was not fun and I’m glad it’s over. It was worth it though because having a port is amazing. More on that later.

We got the biopsy results and I was officially diagnosed with Non Hodgkin’s B Cell lymphoma. I met with Dr. Sharda and he determined it would be best for me to see a new oncologist. He had never treated a woman who was pregnant before, and wanted me to see someone with more specialty. I was grateful that he was honest and I trusted him to find the right person for me.

February-

I was referred to meet with Dr. Kingsley, who specializes in lymphoma and leukemia. My appointment was set for the end of February and I called Dr. Sharda’s office with concerns. I could feel my tumor growing, I was struggling to function with how tired I felt, and I needed to know that waiting that long was OK, or I needed an earlier appointment. They got me an appointment for just a few days away and I was so grateful.

Meeting Dr. Kingsley gave me a lot of reassurance. He took time to explain things to me and answered all my questions. Importantly, he supported my decision to maintain my pregnancy and assured me he would do his best to keep our little girl safe during the treatments.

Results were reviewed with me and he said genetic testing showed that I had Burkitt’s lymphoma, which is really aggressive, yet also typically responds well to chemotherapy. Because the tumors grow so quickly, they also absorb the chemo as they attempt to grow, which causes them to shrink and hopefully disappear entirely. I felt so much relief that the cancer I had was treatable and that there was such hope for remission.

The words from him that stood out to me the most were when he said, “This cancer is curable and I want to cure you. I want to see you living life with your daughter, I want you to live to raise her, and I want you to live to see your grandchildren too.”

I met with him on a Friday, and he wanted to start chemo the following Thursday. Finally, things were starting to get moving! In preparation for chemotherapy, in that short time frame, he had me do a bone marrow biopsy, 8 MRI’s, and surgery for an Ommaya reservoir.

Typically a PET scan would precede chemotherapy, but since they are not safe for pregnancy we did multiple MRI’s instead. It’s not as detailed as a PET scan, but would give us a good enough idea of where we were starting at.  The MRI’s showed that I had a large tumor pushing against my left ovary, I had a tumor in the lining of my stomach, I had multiple tumors in both my breasts, and of course the tumor under my arm. That one was the largest, measuring at 11 ½ by 13 ½ cm. It was huge. 

I had surgery to place my Ommaya Reservoir, which you can read about by clicking here. Essentially, it’s like a port that they surgically place under my scalp and has a catheter that runs to my spinal fluid. This enables them to draw spinal fluid and give medication through the reservoir. This was my chosen alternative to receiving regular spinal taps. Instead, medicine could be given through my Ommaya.

Even though the diagnosis process took longer than I wanted, I choose to trust that it was all God’s timing. Especially because of our baby girl. Because the timing in the beginning took so long, my surgery was after the first trimester and I started chemo at 17 weeks pregnant, which made it safer for her.

I’ll forever be grateful to Dr. Kingsley for taking on my difficult case and offering me reassurance and hope along the way. We also have an amazing high-risk pregnancy doctor closely monitoring our baby. I’m so grateful for the people God has placed in our lives to help us along this journey.