Caregiver: Skull base tumor expertise saved my husband’s life
I’ve been an educator for 16 years and a high school librarian for eight. I teach kids how to do research, so I know how to find stuff online. And that’s exactly what I did after my husband, Mark, was diagnosed with a rare skull base tumor called chordoma of the clivus last summer.
None of the doctors or specialists we saw here in Alabama could even tell us what it was, much less how to treat it. One thought it might be an infection. All of them called it “inoperable,” which meant they didn’t think it could be removed surgically. They suggested we go home and get Mark’s affairs in order, because whatever he had was probably going to kill him.
At the time, our son was only 3. So, that prognosis was not OK with me. I started researching. And the one name that kept popping up was MD Anderson. I have one dear friend who works there and another who received treatment there. So, I’d already heard it was a fabulous place. It also has an entire team focused on skull base tumors, like my husband’s.
Now, after seeing firsthand what MD Anderson did for Mark, I know my friends were right. When it comes to cancer, MD Anderson is a whole different ball game. No one can beat it.
A better prognosis after a skull base tumor diagnosis
After three weeks of being ping-ponged back and forth between local doctors who told us Mark was probably going to die, I was completely freaking out. Then we met with Dr. Shaan Raza, a neurosurgeon at MD Anderson. After completing his examination, he said, “Not only do I know what this is, but you’re the second patient I’ve seen with it this week. And, yes, it’s rare. But you’re going to be OK.”
Dr. Raza said Mark’s tumor was a chordoma of the clivus. He would need a 10-hour surgery to remove it from the skull base. Then he’d need eight weeks of proton therapy under Dr. David Grosshans. After that, Dr. Raza told Mark, “You’re going to go on and live a long life.”
Hearing that was like having an elephant get up after sitting on your chest. For three weeks, I hadn’t been able to breathe. We were like, “OK. What?” Because we’d come in that day thinking Mark’s tumor was inoperable. And here we were, leaving with a surgery date. So, not only did Dr. Raza give us a plan, he also gave us hope.
My husband’s skull base tumor surgery
Mark’s procedure took place on Dec. 5, 2018. Having a loved one in surgery for 10 hours is nerve-wracking, to say the least. But the entire staff at MD Anderson was incredible — just phenomenal. They kept Mark very comfortable the whole time and made sure I was well-informed at every step.
In fact, one of the reasons I didn’t freak out so much is because I knew exactly how the surgery was going to go. Dr. Raza and Dr. Shirley Su, Mark’s head and neck surgeon, gave me a detailed description beforehand. The first part would be Dr. Su clearing a path to the tumor for Dr. Raza through the sinuses. The next would be Dr. Raza actually removing the tumor. And the final part would be Dr. Su closing the incisions back up. I’d know everything was going smoothly and according to plan by which doctor was giving me the update. That was a big-time relief.
Life after skull base tumor treatment
The hardest part of Mark’s diagnosis and treatment was having to be away from him for so long. I’ve got a great support system at home and we both have very supportive workplaces. But the eight weeks he spent getting proton therapy was the longest we’ve ever been apart in our 17 years together.
It was tough, knowing Mark would be by himself for that. But I had to stay home and take care of our son. So, we set Mark up in a temporary apartment in Houston and made plans for people to visit him. That way, he’d never go more than two weeks without having family around him.
Mark finished his cancer treatment on Feb. 28, 2019. And he’s shown no evidence of disease since then. He has to go back for check-ups every four months, but that’s OK.
Dr. Raza was able to remove every part of the tumor he could see, which reduces the chances of recurrence. And statistically, that’s the most positive scenario you can have. There’s still a 50% chance that Mark’s tumor will come back someday, so we’re always going to be a little on edge. But knowing MD Anderson has given us the best shot possible is a huge relief.