A few years ago, my doctors started to notice that I had swollen lymph nodes all over my body. A couple of the normal spots where lymph nodes sit are in the neck and under the arms, but I also had them all in my stomach – and they were too big, which was very concerning.
At first I thought it probably just had something to do with CVID, but my doctors were concerned that it was something more. The main concern they had was lymphoma.
I also had a low white blood cell count, which was worrisome as well, so they suspected leukemia could also be a possibility. I ended up seeing an oncologist/hematologist, and we began searching for the cause of the lymph nodes and low WBC.
What really sucked was that I was in college. This all began my sophomore year, and hearing that I might have cancer absolutely shattered me. I felt anxious every single day until the next time I could visit my doctor or receive results from a scan, procedure, or blood test.
Over the next few years, I went through a lot of pain and agony to figure out what was going on with my body. That is when they discovered that I had the lung disease – Granulomatous and Lymphocytic Interstitial Lung Diseases (GLILD). This meant that I had lymphocytes in my lungs, making it hard to breathe and thus causing them to shrink.
The first test I got was for leukemia, and it was a bone marrow biopsy. Let me tell you – it HURT. I had heard mixed reviews before. Some say it really hurt, others say it was basically painless. For me, it was honestly really bad and I was just waiting for it to be over.
Good news – no leukemia. The next step: figure out if I have lymphoma.
I was told that I needed to get surgery to remove a lymph node and test it, either from my underarm or my stomach. As I pictured swimsuit season and wearing a bikini, I hoped and prayed that they would choose my underarm. And they did. I went under and woke up with a scar under my arm.
The recovery wasn’t too bad, but I still have a scar under my arm to this day.
The bad news – they said that they didn’t successfully get a lymph node, so we had to do the surgery again on the other arm. Soooo now I have a scar under both arms. Fun, right?
The good news – the doctors said they found no cancer! I was elated. I was so surprised and happy, even though I didn’t quite have an answer.
I had to go in and receive the medication via an IV for 6 hours twice – about two weeks apart. This was about 6 months ago, so I have been taking Mycophenolate alongside it.
What’s amazing is that this treatment has worked WONDERS. When I got the IV, I definitely felt a little tired but didn’t have many side effects, which was nice. 6 hours is just a lot at once.
My lymph nodes shrank to normal size and my lungs are doing awesome! I am definitely grateful for this medicine for helping with a problem that made me anxious and took hours of my life away for years. Those times were really hard, but I am hoping I can continue to keep my symptoms at bay.
If you’re facing a diagnosis or an unknown health future, you’re not alone. It’s okay to be worried, anxious, and scared. Many people are. I cried so many tears with family and friends because I didn’t know if I would even finish college or have a normal life. But guess what – I did, and I do!
Let yourself be scared and sad and in pain. With health scares, you will figure it out and many times its just trial and error. You will get your life back and you will find your joy again!
Here I am, I graduated college in four years with two majors, I was in a sorority, I traveled, and made some amazing friends – all while this was going on. And now I’m in a new city with a job I love!
I like to say – this too shall pass. I know this won’t be the last scare and I’m trying to embrace life and be prepared for anything that comes my way!