A few years ago, I had an appointment with my neurologist.

The results of my latest MRI had shown new lesions in my brain, meaning that the multiple sclerosis was progressing. It was odd looking at my brain. What had once been a galaxy of bright shining stars was now a world of grey clouds where the lesions had once been. Tucked down at the edge of the MRI results was a single new lesion, looking impossibly bright in the haze of grey.

My neurologist was pretty much dismissive that night. “We’re going to change your medication,” they said. “Here’s a pamphlet about Mavenclad. It’s a smart drug. It will go boom boom, and then you’re done.”

“What’s involved in the boom booms?” I asked, hoping for a bit more information than simply boom boom.

“It will destroy your immune system so that when it grows back, it will do so without the lesions that cause your MS. You just have to do two doses and that’s it for the rest of your life.”

It sounded like a viable plan, until I flipped through the booklet she had given me. On the first page, there was a list of side effects that the drug caused. The first one on the list was cancer, followed by hepatitis A and B, shingles and tuberculosis. “I don’t know if I want to take a drug that could cause cancer,” I said.

They waved a hand to push my words away. “Probably one person out of a thousand people developed cancer, so they had to put that there. Don’t pay it any mind. What’s important is that after two rounds of Mavenclad, you’re done. In two years, you will be done and that’s it.”

I trusted my neurologist, so I said that we’d go ahead with it. Both my husband Michael and I were comfortable with the decision, even if the drug did cause a list of different side effect. I had been booked in to have my tuberculosis and shingles vaccine. I would need to have those done before I started taking the Mavenclad.

I had to have all sorts of bloodwork before I could begin taking Mavenclad. I had to be vaccinated for shingles, hepatitis A and B because Mavenclad could cause all of those. I had to be HIV negative which I am, but the HIV drugs interact badly with Mavenclad. We made appointments for bloodwork and vaccines, and I sat in my neurologists office thinking of all the things that I wasn’t told. If I needed all of this preparation to go on the drug, chances were that it was a lot bigger of a deal than they were letting on. I had difficulty remembering the name and so made up a rhyme for myself (look at the title of this post).

I called my mom on the way home to let her know that my medication would be switching from Aubagio to Mavenclad. “The doctor called it a very smart drug.” I said, knowing that I was trying to comfort myself, too. I tried to sound upbeat about a new medication. This was just a step on my journey after all.

She called me back a few minutes later. “Do you know what this drug is, Wonder Son?”

I told her that no, I didn’t. My neurologist hadn’t told me everything about Mavenclad. I knew this. I had to believe that my neurologist had my best interests at heart.

“It’s chemotherapy. It’s normally used to treat lymph note cancer and other forms of the disease. They only just started using it to treat MS.”

You could have knocked me over with a feather. I was shocked, but I wasn’t, not really. My multiple sclerosis had progressed, so I knew that as soon as I saw the new lesion that I would be put onto a new medication.

When I googled Mavenclad, I learned that it was indeed normally used to treat lymphoma cancers. Websites also advised against touching the pill with bare skin as the medication was cytotoxic or toxic to living cells. There was whole host of side effects that my neurologist hadn’t told me about. Still, I figured that after two years, my treatment would be done, and I wouldn’t have to worry about taking a drug to supress my MS anymore.

When the Mavenclad pills arrived, they came by courier in a medical box. It had a big caution sign and a red cross on the side of the box. This didn’t make me feel very comfortable about taking the Mavenclad, but I assumed that my neurologist was thinking about my health. They wanted the MS gone from my body as much as I did. While I knew that Mavenclad wasn’t a cure, there is no cure for MS, maybe the drug would help me live my best life possible.

I started the pills almost right away. I had to wear gloves to handle the pills, wash down any surface the pills touched and be careful with bodily fluids as they weren’t sure what the Mavenclad would do to my husband. I was advised to wear protection during intercourse because they weren’t sure how Mavenclad would affect my husband. It seemed like an insurmountable mountain that I was being asked to take into my body. I had done a bit of research about what the pills would do to my body, and I knew that they would affect me for months after taking them. I was reminded of the Greek God Atlas, made to carry the world on his back. I would be the same, but I was being asked to carry a world inside of me.

The first week was all right, but I was nauseas throughout. The week after was terrible and I ended up having to take time off work. I was dizzy and felt sick all the time. I had balance issues and then I began to lose my hair. I looked at my hair in the mirror and noticed that it had begun to thin and go patchy in some places. It took longer to grow, too. I shaved my head bald and my eyebrows, too, after a little square patch had fallen out of my left eyebrow.

After the second week of pills five weeks later, the nausea got worse, and I could not look at my phone or Kindle in a moving car or I would get sick. I got sick a lot anyways and didn’t have much of an appetite for food. I got better with time, and I did my bloodwork every month to see where my red blood cell count was at. When it reached the right levels, I would start the next round. That year, with my immune system crashing, my husband and I spent Christmas and the holidays on our own. I was too afraid to be around people and leave myself vulnerable to illness.

I basically became a shut in. I went out for a walk every day, but I did what I could to be completely away from people as my immune system decreased. I remember friends during those first two rounds of treatment. One told me that I shouldn’t be afraid, that I had to live regardless of what happened. Another let me talk to her mother who had been through different kinds of chemo treatment, and she advised me to do what I was comfortable doing. It was my health and my journey and no one else’s.

That wasn’t entirely true, though. There are so many people who have been with me since the beginning of the treatment, like my beautiful husband, my parents, family and friends. I think a thing like chemo, or any kind of medical treatment, is not just your journey. It’s the journey of hundreds of people that are right along with the treatment with you. I’ve learned that along the way. It’s my journey, yes, but I do not go on my journey alone. Though I sometimes feel like I’m living on an island, there are always hands to reach out and hold me. My loved ones make sure that I don’t feel alone for too long.

After my second dose of Mavenclad, my neurologist thought that I would benefit from a third round of chemo. “I thought you said that after two rounds I would be done.” I said, trying not to let the panic enter my voice. I had to be brave to face this, I told myself. I remember sharing a look with my husband. His gaze asked me to give him my fear.

“Your neurofilament light chain test came back with a six percent. That means that the MS is only six percent active in your body. I think we can stamp it out and finally stop it if you do another round.”

The idea of no more lesions and the possibility of fewer symptoms was a strong lure. I agreed to a third round of medication and thought that was the end and the last time that I would have to take it again. I recently finished my third round, and the side effects were awful, and I had to limit my interactions with other people again, but I would finally be finished. I was weak and tired and didn’t have a lot of energy. My immune system was shutting down again, but I would be done.

Except I wasn’t. I love how life sometimes throws a curveball when we least expect it.

During my last appointment with my neurologist, we did the normal tests to check that I could feel touch and that I hadn’t lost feeling in the bottoms of my feet or the palms of my hands. She checked my eyesight and went over the medications that I was on. We talked about my general health and whether or not I’d had any bladder infections. We talked about what I was doing to stay active and I told her about the workouts I do three times a week, the swimming I do at least twice a week, my daily walks.

She told me that she loved my positivity. I knew that the appointment had about ten minutes or so left, so I figured she was winding things down. Then she told me that I would be doing a fourth round of Mavenclad.

I had a million questions fall from my tongue never to be spoken. “But I thought you said I would be done after three rounds. You said that no one had ever done a third round. I had to get special permission from my insurance. Why am I doing a fourth round?”

The desperation I felt in that moment was everything. They said that had never been the case, that Mavenclad was actually given in two cycles of two rounds each. I told her that she had said two rounds, and I was done, then we got permission to do a third round. “That’s what you said.” I told her. I looked at my beautiful husband and he nodded.

“Why are we going for a fourth round when we don’t even know if the third round worked?” Michael asked.

“I can send you down for a neurofilament light chain test after the appointment and then we’ll know for sure if the medication did it’s job.” My neurologist said.

That didn’t do anything to answer mine or Michael’s questions. We went for the light chain test and the other bloodwork and went home. As we drove home, we tried to find the right words within the confusion. Michael pointed out that another round might not be such a bad idea. I remember nodding and took comfort from his words. He squeezed my hand, and I looked at him, took in the worry etched on his face and I knew that I had put it there, however indirectly. He was worried for me.

On the way home, I tried to find hope amongst the worry. I wondered why my neurologist was prescribing a treatment without knowing what the results were. I decided to do what research I could and went to the Mavenclad website. I noticed a few things. The first thing that had popped up when I did my web search was Mavenclad was chemo and it was used to treat lymphoma cancer. That had been removed as if the information had never been.

I went to the Mavenclad website and started reading their information. The drug had changed since I had started it. Now they were saying that 89% of people had positive results when they did two cycles consisting of four doses of the medication. At least now I knew where my neurologist was getting their information. I just wish they had shared that information with me. I was still filled with uncertainty.

I didn’t know what to expect, but that was par for the journey I had been on with Mavenclad so far. I hadn’t been given all the information I needed and so I found my own. I spoke with my husband, with my parents, family and friends. I let them all know that I was going on a fourth round of chemo. Each time I told someone, I became more accustomed to what was going to happen.

I knew that I could choose not to take the medication, but I had to believe that my neurologist had my best interests at heart. I had to hope that the new round of Mavenclad would be of some benefit to me. All hinged on the neurofilament light chain test results. The nurse that took my blood told me that it would take several weeks for the results to arrive, and I knew that I was in for a long wait. I tried to stay positive. I talked to my psychologist about the wait time being like a big pause button on my life and that I hated the uncertainty of it.

Thankfully, someone must have heard me because the results came in two weeks later, arriving last Monday. My neurofilament light chain test results said that my MS was only 1.09% active in my body.

I breathed a huge sigh of relief and was able to look forward at the coming adventure with hope. Even though the road has been uncertain at times, the 1.09% gives me hope that after the next round of Mavenclad in October (hopefully), my MS will be 0% active. I don’t have to believe or hope that the treatment is working; the 1.09% is proof of that.

Still though, I’m left with a feeling of the unknown. I have to hope that the next step on my journey with MS will take me further than I thought possible. It’s the light at the end of the tunnel that is motivating me to move forward, one step at a time.

We’ll see what the future brings.