Is it better?

Ringing the victory bell at MD Anderson on my last day of treatment.

 

One of the many unfortunate things about having a rare tumor was that for sometime no one was certain what it was. In fact, I was misdiagnosed at first. The first surgeon that I came in contact with believed it to be Esthesioneuroblastoma, which is still rare. It has effected maybe 800 people in the world. However, it is a slower moving tumor, and he had me convinced that this thing could have been slowly growing for up to five years without me being the wiser.

 

His plan was to do surgery. I had my first CT scan on Friday October 2, 2009 and he wanted to do surgery the following Tuesday the 5th. He said he couldn't do a biopsy before hand because the tumor was in my brain. Being in 'fix it' mode I agreed to it. In my mind this man, who was very nice by the way, who is a surgeon and said he could remove the tumor. Sounded good to me. My family flew in the next day and put the kibosh on that plan (thank the Lord).

 

At first I argued with them. I wanted this tumor out of my head. I was in so much pain and could think of nothing else but ripping this little bastard of a tumor out of my body. And, there is a man, who went to medical school, who says he can do the task, so why not let him.

 

While I was lying in the ICU that weekend my family worked tirelessly to come up with a plan to make me listen. Finally, after the relentless efforts of my parents, siblings, and John's mother (who is a pathologist), they made contact with the Anschutz Cancer Center at the University of Colorado hospital and MD Anderson. They believed a biopsy could be done through my nose.

 

We had a family meeting in my hospital room the day before I was scheduled to go into surgery, and I finally agreed to cancel the procedure. I told the surgeon that I was going to get a second opinion. I still remember this moment and it may sound odd, but I felt really bad that I backed out. It almost felt like a breakup; you know the old “it's not you, it's me” thing, that's how I felt.

 

I had the biopsy done through my nose, which was uncomfortable to say the least, and then afterward things became fuzzy for me. While the doctors convened on my case and treatment my condition got worse. I was hardly able to get out of bed, and the prescription painkillers had me pretty much out of it. So much so that I don't remember a lot of things that happened in this time. I was finally hospitalized at the University hospital, and I began my first chemotherapy treatment October 14th. It was a 96 hour infusion of taxol, cysplatin, and 5FU. Nurses practically wear hazmat suits while administering this toxin into my veins.

 

After my second treatment, a couple weeks later, my nurse was disconnecting my IV, and she started asking me about my condition. My sister was sitting in the room with me as I answered. I told her it was Esthesioneuroblastoma. My sister sat up and interrupted me, "Umm, Becks, you know that's not what you have, right."

 

"It's not."

"No. Don't you remember the doctor giving you the results of the biopsy in the hospital."

"He did?" Like I said before, things got fuzzy, even important information didn't stick in my brain. "Oh, what do I have."

"Sinonasal Undifferentiated Carcinoma." She told me.

"Huh." I paused. "Is that better?" I asked with a ray of hope.

She shrunk in her chair. "No." She said. It turns out it was a more aggressive tumor. Instead of growing in five years it grew in five months. It was also more rare, affecting 400 instead of 800. It was also classified as inoperable. They knew that it started in my sinuses and that is was some sort of carcinoma, but the word 'undifferentiated' pretty much meant they didn't really know what it was.

 

After six chemotherapy treatments and six and a half weeks radiation therapy the tumor shrunk enough to be removed surgically. After the tumor was completely removed and available for further testing I was officially diagnosed with Sinonasal Teratocarcinosarcoma. When the doctor told me the new I diagnosis I again asked, "Is that better?"

"No." He replied. Instead of being 1 in 400, I was now 1 in maybe 80 people in the world who have ever has it. It is still aggressive and rare, but now we know that it is a polymorphic  cancer, meaning it can affect and travel through blood, tissue, and bone. In fact, part of the tumor had actually calcified and turned into bone. (and you thought it couldn't get weirder.)

 

Hindsight is always 20/20. If I had undergone that first surgery I most likely wouldn't have survived. Even if I had survived, without being paralyzed or worse, the cancer most likely would have come back even more aggressive and I would have died within months. That is the way these angry cancers work. They are more fierce if they are not dealt with properly the first time.

Thank you to my family and friends who saved my life. You gave me the tools to live. You gave me a missile to take to a gun fight.

 

*This entry was published by CURE magazine February 24, 2014. See link below to view:

http://www.curetoday.com/index.cfm/fuseaction/blog.showIndex/guest/2014/02/24/Misdiagnosed-but-not-misunderstood

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16.04 | 10:33

WOW! What an exciting read. I'm so glad you find humor in all of that craziness lol
I admire the heck outta you!

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26.03 | 11:20

I recall a happy fun person who use too work across the hallway from me. At the Flatirons mall, I hope and pray life still can be as it was for you then!

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26.03 | 01:31

I recall a happy fun person who use too work across the hallway from me. At the Flatirons mall, I hope and pray life still can be as it was for you then!

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18.09 | 15:17

hmmmm so... you have a few "issues".... gottcha... :)

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