Life with Multiple Sclerosis is always an adventure, but in April, my adventure took one heck of a twist. I mean like a loop the loop type of twist of epic proportions…and for once it didn’t even really have to do with MS! What do I mean? Read on, my friends, as I take you on the ride of a life time.
Allow me to rewind a moment. Many of you reading this may or may not know I had an MS flare up in February that made my feet, legs, abdomen, and chest go numb. It made my bones hurt. (Click here to read more about that delightful time).
The good news? Everything is back to normal now with the exception of my hands. As I type this, they are still numb in spots and my fingers have occasional pain. It’s manageable though, so I have adjusted my crown and just keep trudging forward!
Because of that flare up, I had to suffer through an EPIC battle with my specialty pharmacy and insurance. My neurologist wanted me to switch to a new MS drug called Ocrevus. It’s a four hour infusion. Well, denial after denial kept arriving (in letter form) at my house telling me I needed to fail on two medications before I could start Ocrevus. You read that right. I needed to FAIL, AKA get worse, before I could start on the medication my neurologist wanted me to take.
My neurologist and one of his nurses never stopped fighting for my rights. After four denials, we got the approval. Great, right? Well, there was still one thing standing in the way of me starting Ocrevus. A mammogram.
Here’s the deal. Ocrevus is still fairly new. My neurologist explained that some patients on the drug developed breast cancer. Because Ocrevus is new, doctors are still trying to figure out if patients who developed breast cancer already had cancer when they began the drug, or if the drug is the cause. Hence, the need for a mammogram.
I fully believe in getting breast exams and mammograms. I watched my dear friend (and fellow co-worker), Reba, recently battle breast cancer and win. I had no fear. I have no family history of the disease, so I walked right into the imaging center with a “Let’s do this” attitude.
The women at the imaging center were amazing. The 3D mammogram was a piece of cake. I walked out feeling pretty good! Then, the next day, I got the call. (In case you haven’t picked up on it yet…this is the loop the loop part).
I was on my way to a school visit where I was going to talk with dozens of elementary students about journalism, when my phone rang. A woman on the other line told me the results of my mammogram were in.
She said, “Your right breast is fine.” Then, she shuffled a few papers.
“What about my left breast?” I asked.
“The did find and abnormality in your left breast. We need you to come in for an ultra sound,” she said.
She explained that she couldn’t tell me what was found. Her job was only to schedule the ultra sound. She said my doctor had the results.
So, we scheduled the ultra sound for that afternoon and I called my doctor. The nurse there told me they found a 1.7cm “tissue density” in my left breast that needed further examination.
By this point, I had pulled into the school parking lot (remember, I still had to speak to students about journalism). My brain was a mix of mush and disbelief. I called my husband to let him know what was going on. Ever the fabulous human, he calmly said, “Okay.” He asked how I was doing. At that point I said, “Well, I don’t really have time to think about how I am doing right now because I have to speak with students and then head over for the ultra sound.” We hung up, agreeing that I would call him with the results of my appointment.
For about an hour and a half, I spoke with students about the joys and challenges of journalism. The kiddos were just what I needed to keep my mind from wandering into a dangerous rabbit hole.
Then, I was at another doctor’s office and on a table getting the ultra sound. I was told there were two spots in my left breast that needed to be examined. Then, I was told, “No. There are four spots.” WHAT?! Four spots need to be examined? This day just keeps getting better, doesn’t it?
The nurse was calming and wonderful. She told me she was going to take the results of the ultra sound to the doctor and if he needed to come in to talk with me further, he would.
Sure enough, 5 minutes later, in came the doctor. On the outside, I was cool as a cucumber. On the inside, I was totally freaking out. Did I have MS *and* breast cancer? I know some MS patients who do have both, and I just can’t fathom the strength they have to muster every day to fight that incredible battle.
I looked at the doctor, almost pleading to just spit it out. The first words out of his mouth?
“This is nothing.”
Three magic words that brought my roller coast ride to a joyous and screeching halt. He explained I have four cysts in my left breast that are very tiny and very common. They are not cancerous. They do not need biopsied. They do not need drained.
That was it. I was free to go.
As the room cleared, I just laid on the table for a moment staring at the ceiling. In a matter of five hours I went from wondering if I had MS and breast cancer, to learning, with relief, I just have MS. Sounds strange doesn’t it? Having MS is a relief? Well, in that moment…it was the truth.
I left the doctor’s office having learned a valuable lesson. It’s actually a lesson I have always believed, but it was reinforced that day. Mammograms are extremely important. Breast exams are extremely important. Listening to your body is extremely important. Speaking with your doctor is extremely important.
I am not 40. If it weren’t for needing to go on Ocrevus, I would not have had a mammogram for several years. Now, because of the medication, I will get a mammogram every year. I will also have a thorough breast exam every six months.
I had my first Ocrevus infusion the day after the ultra sound on my breast. I have had no side effects and I am so thankful for every moment of every day.
It is not lost on me that not every woman or man leaves a mammogram or a breast ultra sound with good news. That’s why we have to be there for each other, lifting each other up, sharing our stories when we can, and being a positive light in the lives of others. Focus on the good, be kind, and raise awareness.