I Was Misdiagnosed With Cancer

When I was diagnosed with kidney cancer at the age of 31, it was hard to believe. Not only for my family and I, but all of the doctors and specialists I would come to see, too. Almost everyone I saw said they hardly ever see someone in their 30’s with kidney cancer and that we were so lucky that we caught it early. It’s so important to try and catch it early and you can make sure to look into getting a cancer screening in Nashville. They were even able to remove it all during surgery so I didn’t even have to go through treatment. Luck, a blessing, someone watching over me….I’ve heard it numerous times since then and I believe it.

5 months later, I started having some unusual symptoms so I went back to my oncologist. My symptoms were that I had two giant and visible lymph nodes that were sticking out my neck that just wouldn’t go away. It started to hurt to move my neck in either direction and then I had a rash cover my whole body. My doctor decided then to have me get a CT scan to see if anything was showing up and could be related to the kidney cancer.

The results came back that not only were 2 lymph nodes enlarged in my neck but I also had a 4cm enlarged lymph node in my armpit that I didn’t even know was there since it was so deep. She scheduled me for a core biopsy for one of the lymph nodes in my neck and I nervously arrived to the procedure. Luckily, the doctor who was reviewing the scan decided against doing a biopsy on the neck lymph node and wanted to go for the one in the armpit. It was a painless procedure and I was then scheduled for an appointment with my doctor in a few days.

When that appointment arrived, my family was preparing to go to Walt Disney World for the week. Literally, we were at the appointment and then were going to pick up my son at school and hit the road. My doctor delivered the news that the initial results were coming back as it being lymphoma – but they weren’t sure if it was Hodgkins or Non-Hodgkins lymphoma and more pathology would have to be done. Dr. S told us to go on the trip, that it didn’t appear to be a fast-growing lymphoma and that she would be in touch with me when the results came in.

February 12th. I’ll never forget that date. It was the last day of our Walt Disney World trip and we were in the Magic Kingdom aka The Happiest Place on Earth. My husband and son were on the Haunted Mansion ride and I was sitting with the girls in Frontierland waiting for the afternoon parade. Evie was sleeping in the stroller and I was enjoying the one on one time I had with Olivia as we waited for the parade to start. My phone rang and I saw it was my doctor calling. I decided to answer it and heard the news: it was Non-Hodgkins lymphoma. An aggressive kind. As soon as I got back from WDW, she had already scheduled me for a PET scan, a bone marrow biopsy to see if it had spread and surgery to remove the lymph node in the armpit. Even though it was news I was expecting, I was still numb and had to have her repeat the type of NHL twice. I hung up and still managed to take pictures and enjoy the parade with my mind swirling and thinking I needed to get to my husband.

Olivia and I during the parade after I talked to my doctor

After the parade, I met up with Heath and Hayden. While the kids played in front of us, I repeated what the doctor told us. He wished I wouldn’t have answered the phone because this was the last day of our trip and it felt a little tainted now. The two of us instantly had our mood dip and we tried to be positive for the kids. We decided to spend our last night in the hotel, both of us not feeling like staying out. Then, we had two days to drive home – two days where I must have spent hours on Google, trying to read up on this type of NHL.

The next week was a whirlwind. I had the PET scan, where the lymph node in my armpit lit up at a 10.4. I was schedule for surgery the following week and I had my bone marrow biopsy also. I felt like I was constantly on the phone with my doctor or someone from her office as we would be replaying information back and forth. When it came time for the surgery to remove my lymph node (on Olivia and Evie’s 3rd birthday), they also told me they would be placing a chemo PowerPort in my chest. It was  my doctor’s belief that I would be starting chemo within the month.

Surgery was uneventful and then we were at a standstill. It would take at least 10 days for the bone marrow biopsy results to come in and a few days for the pathology to come in from the lymph node. Finally, the day came for my appointment. My husband took off work to come with me and my Mom was home with the kids. My doctor explained that the bone marrow biopsy came back as clean – yay! – but that the pathology was coming back as inconclusive. The pathologist was having a hard time determining exactly WHAT type of Non-Hodgkin’s lymphoma it was. There’s over 50 types and before starting treatment, you HAVE to know what type it is. She told me she wanted to send my pathology to MD Anderson, one of the top cancer centers in the United States. We agreed and talked a bit more. She told me that I would start chemo within the next few weeks. The only thing I still needed to have done was an EKG but we could do that a week before treatment. She asked if Heath and I were done having kids because if not, I could go through procedures to save my eggs. We declined and she said then I would be ready to start treatment as soon as we had the results back – but that she wanted to send me to Siteman Cancer Center in St. Louis. Because it was what she thought an “aggressive type” of NHL, they would be able to treat it better. They made the appointment and then we were back to the waiting game.

During this time of waiting for results, I told a few friends and family what was going on. Even though I’m a blogger and regularly share my life, I didn’t want to share this for some reason – and I’m still not sure why. Heath and I also decided not to tell the kids. I didn’t want to until we had nailed down the type of lymphoma and got my chemo schedule. I let their teachers know just so they could be on the lookout for any abnormal behavior – I was going to doctors and labs almost 3 times a week not to mention the procedures and surgeries – and I know Hayden knew something was going on.

It was during this time that I found my village. Sure, I already had my mom and mother-in-law helping me out with the kids but I am amazed at my friends, family and neighbors and what they would do to help our family. From bringing over meals or having pizza delivered to picking up my son from school on a regular basis to cleaning up our backyard and crying with me on the phone and late at night. They would constantly check up on me and my family – not only worry about ME, but also about my husband and kids. They would drop what they were doing if a doctor’s appointment ran late and I needed my son picked up. The girls Mother’s Day Out program let me bring them in on extra days I had appointments at no extra charge – or let me switch up things at last minute. Blogger friends sent care packages from afar. I’d come home from the doctor and my mom would have done all our laundry or my mother-in-law had dropped by some chili and all the toppings. You never think anything good will come with a cancer diagnosis, but this is truly when I found my village and the people I love.

During this waiting period, results from MD Anderson were pushed back twice. I was so frustrated that it was causing me to cry and have mini breakdowns. As crazy as it sounds, I just wanted to start treatment and get on with my life! Finally, Siteman decided they wanted to test everything themselves – my lymph node, my bone marrow biopsy, more labs – and they would collaborate with MD Anderson when those results finally came in.

Of course, 2 weeks waiting for Siteman to check everything turned into 4 weeks as their pathologists took time to look at it. When I got frustrated, friends and family would remind me that it was good since they were obviously being thorough. And it did turn out to be a good thing because finally the day came to meet with Siteman because they had their results and MD Anderson’s results.

When the doctor came in, she was smiling. I honestly couldn’t believe she was smiling when she was about to tell me that my life was going to change so much. I had been researching chemo effects, the best diets to be on and so much more. I had created a Pinterest board called “Kick Cancer’s Butt” filled with tips on getting through chemo, cancer-fighting food, cute little hats and more. I had started deep cleaning my house and trying to set up a schedule for my kids, since I didn’t know how I’d be able to function once chemo started. I had declined trips and jobs for my blog since I didn’t know how life would be for the next few months. I was ready to hear the news and get on with it.

The first words out of her mouth were, “I have good news! You don’t have lymphoma! There’s actually nothing malignant.” I was in shock. I remember looking at my husband as she kept talking and explaining what was actually going on.

The official diagnosis of what I have is progressive transformation of germinal centers. It’s known to be mistaken for Non-Hodgkin’s lymphoma because it looks so similar to pathologists. But Siteman and MD Anderson agreed – it wasn’t cancer. It can cause lymph nodes to enlarge and then can look like lymphoma. There’s a CHANCE that it can turn into lymphoma, but with 6 month follow-ups, we would be on top of it.

So many emotions hit me as I processed the news. I was overcome with what you would expect. Relief and joy. But then I was hit with other emotions. Guilt that I let my friends and family do so much for me. Embarrassment that I would have to tell friends and family that I was wrong. (Even though in reality, the doctors were wrong. It was hard for me to distinguish the two for awhile). As we told friends and family the news, there seemed to be two camps. All were ecstatic but some were also mad that I went through this. That I now had to go through ANOTHER surgery to remove that chemo port put in me (oh yeah, remember that?). Others said I was granted a miracle, a second chance at life and to just be happy. A month later, I’m still trying to decide how I should feel.

I’m thankful for so many things. I’m thankful for my husband who dealt with me through these months – listening to my thoughts and fears. I’m thankful for my kids, who whenever I was feeling down or overwhelmed only needed to cuddle me or make me laugh to make me feel better. (I’m really thankful we never told them what was going on!) I’m thankful for my friends and family for everything they did. I’m thankful for the companies I work with and my boss for being so understanding with deadlines and projects. I’m thankful for the fact that I never chopped off my hair (because I considered doing it in preparation of losing it!). I’m thankful that the chemo port is OUT of my body even though it has left a nasty scar on my chest – that a friend said I should tell people I was in a bar fight, ha!

It’s been an unbelievable last few months. I know that my health journey isn’t over. I let myself gain THIRTY pounds over the last few months because I’m a terrible stress eater. I still have to see my two kidney doctors for follow-ups for the kidney cancer. I’ll still be seeing the lymphoma doctor at Siteman as we follow-up with this and I’ll be getting another PET scan next year. But right now, I’m feeling hopeful. And happy that I DON’T have cancer.