My Story: Part Two: There Has to Be Another Way
After four doctors told that surgery was the only way to treat the large cancerous tumor growing on my sacrum, my only thought was this: there’s no way in hell I’m having that surgery. There has to be another way.
I wanted to surf. I wanted to save my bowel and bladder function. I wanted to keep my body intact. I was grasping for any way to salvage a normal life.
A Desperate Search
There has to be another way. This thought consumed me. I knew it to be true and I knew it my bones. So, I set out to find this other way. As soon as I got home, I googled for hours and came up with nothing. It was one of the most depressing moments. This cancer was so rare that all I could find was information reiterating what the doctors had told me: surgical removal of the sacrum and its root nerves were the only treatment.
I desperately wanted to find some evidence that I could solve this a different way. I wanted to find someone who had gotten through this without surgery. But I couldn’t find anything. My searches came up short. I couldn’t find any patients to connect with, nobody to talk to, just a bunch of scientific journals and conventional medical mumbo jumbo. I felt defeated.
But I kept searching. I got ideas and books from friends and family. Nothing that was an alternative to surgery in their eyes, but one book in particular gave me an idea. Radical Remissions: Surviving Cancer Against All Odds by Kelly Turner talked about various alternative healing methods. After years and years of digging into the research on what contributed to remissions of cancer, she came up with nine healing factors that were consistent in her search. One of them was on becoming more spiritual. In that chapter, there was a case of a young man with a brain tumor who had healed after going to see a medium and healer, John of God in Brazil.
So I decided I would do that too. (Of course, I overlooked the point that he lived and meditated there for hours and hours for over two years before he was cancer-free, but still. After hours of anecdotes and miraculous stories of people who had healed from one visit, I was hopeful.)
Off to Brazil
Because the doctors had told me the tumor was “slow-growing,” I figured I had time. My little sister and I took off within a couple weeks to Brazil. Sitting on a ten-hour flight with a sacral tumor was one of the most painful things I’ve ever done, but I was desperate and determined. After two weeks in Brazil, my pain had become so bad, that I decided to come back home. Being in a foreign country, away from family with serious pain just didn’t feel right. I was scared.
When I got home, it was mid-June and I was due for another MRI, as protocol for my upcoming surgery scheduled within a month. I still hadn’t committed to the surgery, and was still determined to find another way, but I also knew that I had not been healed by going to Brazil. I knew that I still had a tumor.
But after I got the results of the MRI, my doctors were blown away. And so was I.
Since the previous MRI six weeks ago, the tumor had TRIPLED in size! No longer the size of an egg, it was now the size of a grapefruit. Dr. H, the orthopedic surgeon, was stumped. Chordoma’s main feature is that it’s slow-growing. But this. This was an aggressive tumor. Was this really Chordoma? The Chordoma Foundation told me to “get another biopsy.” A case of classical Chordoma in which the tumor had grown this aggressively was unheard of.
So the doctors did another biopsy and again confirmed that it was in fact classical Chordoma. But for some reason, the one in my body was behaving abnormally and aggressively, like a well-mannered child suddenly going haywire.
Dr. H was so dumbfounded. While he had initially insisted on being the one to do my surgery, even after I had requested a referral to the UCLA Chordoma specialist, he now granted me my wish. Apparently, the surgery was going to be much more complex, so he threw in the towel and handed the reigns over Dr. Hornicek, a renowned orthopedic surgeon who specialized in Chordoma cases.
The only problem was that he had a two-month waiting list. I had an aggressively growing tumor that tripled in size in six weeks, and now I was going to have to wait two more months with this thing growing inside of me? What size would it be by then? A spaghetti squash? A pineapple? What fun I had gotten myself into.
The Truth about Surgery
Luckily, I have friends in high places (shoutout to Neda) and after some strings were pulled, I ended up getting an appointment within two weeks. By this time, with the tumor, the pain, and fear growing exponentially inside of me, I resigned to the surgery. So now, I just wanted this thing out of me, regardless of the consequences. I needed to save my life. I desperately needed to be out of this pain.
However, after meeting with Dr. Hornicek, now the problem was scheduling the actual surgery. Because this surgery involved four surgeons: orthopedic surgeon, neurosurgeon, plastic surgeon and general surgeon, they all had to find one day on their busy calendars to do my surgery.
I should also mention that this surgery was actually two surgeries, on two separate days. One incision in the front, and then two days later, an incision in the back. It was explained to me that it’s difficult cutting through bone, and just like you would cut down a tree, you have to cut it down from both sides.
I would be in the hospital for two weeks, followed by an in-patient physical therapy habilitation center for another 3-4 weeks. Following the surgery, doctors would have to clear me to sit, something that could take up to six weeks. And even then, I would only be able to sit for 15 minutes at a time. I would also be using a walker for 3 to 6 months after the surgery.
By this time, I had joined this Facebook group of Chordoma patients around the world, where I heard more horror stories. I met people whose wounds still hadn’t healed months after surgery, who had to have blood transfusions during the operation, and several more, who years later, were still taking narcotics just to get through their day. I did not want to have this surgery, but I did not know what else to do. The pain kept getting worse.
I ended up waiting 8 more weeks before they finally scheduled the surgery. 8 more weeks of increasing pain, tumor load and fear, alongside the grief that I would likely live the rest of my life unable to surf or have a normal, continent life.
But luckily and serendipitously, I never ended up having that surgery.
Continue to My Story: Part Three