Tag: chemotherapy

Choose Hope.

CraniotomyMeg

“You have a choice to make,” my oncologist said last week. “We can wait another 3 months, do another set of MRI’s and then make a decision, or we can treat aggressively now, knowing that tumors in NF2 patients are known to grow over time.”

Let’s be real. Neither of these options sounded great;

  1. Wait for the tumors to grow, and then react.
  2. Proactively treat tumors that will inevitably grow.

I also knew I had a third option; 3. I could do nothing. I was just starting to feel ‘normal’ again after being diagnosed with NF2, and having 2 back to back brain surgeries. I missed life before my diagnosis. 

But, pretending as though the tumors are not there will not make them disappear. Doing nothing will not give me more time with my family.

So, I quietly dismissed the idea of doing nothing, resolving myself to do something, and listened as my oncologist explained the pros and cons associated with Hydroxyurea.

It is a pill form of chemotherapy that I can take at home, without needing intravenous infusions. It works by slowing down rapidly growing cells, which could potentially keep all of my tumors at bay.

I asked my oncologist, “if it were you, which option would you choose?” He replied, “I would start taking it immediately.”

So, after a lot of research, and lengthy conversations with my medical team, I’m choosing to fight. I choose hope.

My oncologist put the order in for the chemo pills, and a heavy duty anti-nausea medication.

chemo

I will begin treatment today, June 24th, exactly 1 year from the day I was hospitalized for seizures and diagnosed with NF2.

I will need to go in for lab work once a week to be sure my body is strong enough to withstand the medication. The drug can make me nauseous, lose the little hair I have left, lower my already weakened immune system, make me feel extremely tired, and experience flu-like symptoms.

But, more importantly, it gives me a chance to fight my tumors and diagnosis while still continuing to live my life; I can still hold my kids, walk my dog, drive a car, go to work, and get in the ocean when we go back to the beach.

So many things have been controlled by NF2 over the past year; but choosing hope over fear is something I am very much in control of.

My kids may see me THROW up, but they will never see me GIVE up.

I don’t know yet what this chapter looks like, but this is still my story, and it is not over yet. 

 

Meningiomas and Menopause

CraniotomyMeg

I think all of us are equipped with instincts as children that give us hints of who we will one day be. For some, it could be a draw to medicine, animals, science, sports, etc.

When I was a child, I always knew that I would be a career woman, and a mommy.

I was lucky enough to have 2 beautiful pregnancies that resulted in 2 perfect boys:

(They may look similar, but those are actually 2 different babies that both look exactly like their daddy!)

When I was pregnant with our last baby, we knew he would be our last. My husband and I had always envisioned a life with 2 children, and we are beyond blessed to have fulfilled that dream.

Shortly after I finished nursing our youngest baby, I began having seizures that lead to the discovery of 23 tumors in my neurological system and a diagnosis of Neurofibromatosis II (NF2).

After having 2 craniotomies to remove meningiomas, we learned why the symptoms showed themselves so suddenly; the same hormones that created those babies had actually caused my tumors to grow as well.

In hindsight, I’m so glad that we didn’t know of my diagnosis until after I had given birth to those boys. Otherwise, I know that we wouldn’t have them. 

Every time we hear the dangers of pregnancy for NF2 patients, it reinforces how lucky we are to have completed our family… and even luckier that neither of our boys inherited my genetic disorder.

After surgery, we began to consider our options for long term care. My oncologist was the first to teach me that chemotherapy comes in many forms. I’d assumed it would be like what I’ve seen on Grey’s Anatomy; a sickly person with no hair in a cold chair, hooked up to an IV for hours. 

Instead, my first round of chemo is a light drug called Lupron. It is easily given by a quick injection, and works by killing my ovaries, and therefore eliminating all of the hormones from my body. The idea is that we may be able to starve my meningiomas by cutting off the hormones that feed them.

So, in February of 2018, I finished nursing our last baby. And, in February of 2019, I started going through menopause. That’s right; the injections have put me through medically induced menopause at just 32 years old.

Hot flashes. Irritability. Weight gain. Hot flashes. Sleeplessness. Forgetfulness. Hot flashes. Headaches.  Did I say hot flashes?

Thank goodness this Spring in Colorado has been cold enough to help me maintain my body temperature!

32

I debated sharing this picture, because if you look closely, you can see a chunk of new hair flying straight up. It is something I am so insecure about; a small, yet ever present reminder of the brain surgery I had just 6 months ago.

But, I’m sharing anyway. Because there are pieces of this journey that are not pretty. There are pieces that do not lie down exactly how we want them to, and that’s okay.

Those are the pieces that remind me how far I’ve come since my diagnosis just 10 months ago, and they continue to motivate me to keep pushing through the inevitable hard days.

This is my story, and it is not over yet!

**To those of you struggling with fertility, those who are unable to have children due to medical complications, and those who have children with genetic disorders, our hearts and prayers go out to you!**