The MRI above is a pic of the inside of my head. Contrary to popular belief, I do have a brain. But there’s other stuff there. There’s bone tissue, ligaments, muscle and more normal stuff. In addition to all that, there’s one thing that doesn’t belong. A brain tumor. See that kind of oval shape at the end of the arrow. That’s it and it scared the hell out of me.
When my neurosurgeon saw it, on a different MRI, he told me it was benign, but he wanted another MRI that’s more focused so we can track the growth. I was scheduled to go back for more pictures, given the paperwork and sent on my merry way. The paperwork told the technician to focus on the Clivus tumor. I had no idea what a clivus was so I got home and Googled it. That’s when I started spiraling out of control.
Don’t know what a clivus is? It’s a part of the base of the skull. A clivus tumor, obviously means that’s where the tumor is. Now, just for giggles, Google “clivus tumor.” If you just Googled, you probably received a lot of results with the word Chordoma. At the top of my list is the Mayo Clinic website and a definition of chordoma. The Mayo Clinic site is the one I go to first for any medical information I’m seeking. Scrolling down, I continued to see results from other major hospital websites and university websites and almost exclusively they all referred to chordoma.
To save you time, I’ll give a quick, lay-persons definition of what a chordoma is. It’s a benign (usually) tumor that grows somewhere along the spine, usually at the base, or at the top (the clivus.) Although it’s considered benign, it’s also dangerous because it grows. It grows nestled up at the top of the spine in the middle of your body’s Grand Central Station. Pretty much where all the information travels both in and out of the brain to control your bodies functions. It’s a dangerous place to have a tumor because it’s so hard to get to and its size begins squeezing against all the stuff that helps our body do what it’s supposed to do.
Chemotherapy has no effect on chordoma’s whatsoever, so surgery is the first step. After surgery, very small lasers of radiation are used to sweep the area to ensure its all removed. Sound good? Well, not so much. Despite the surgery and the radiation, the tumor will come back so it all happens again, and again, and so on. Despite the battles won, the chordoma almost always wins the war and most people survive only seven years from the first diagnosis.
Now you see why I was getting freaked out? During all this time, I couldn’t speak with my neurosurgeon because he was out of town for ten days. I did have an upcoming appointment with my neurologist though, but I had no doubt he was going to simply tell me I was doomed. I made sure the surgeons office sent my MRI results over to him.
Despite the fear, and late nights researching this damn thing, I quickly came at peace with it all. I mean, seven years is seven years. Last year a good friend of mine died of cancer within a couple of months of diagnosis. Seven years gave me a lot of time to spend with friends and family. I even started looking at my bucket list to prioritize the things I could do without leaving Maurice bankrupt after I was gone. I’ll even admit that in some ways I was relieved. Unlike most people, I knew how long I would last and would make the best of it.
During all this time I did not tell anyone what I had gained from my research. I fed Maurice bits and pieces, but left out some things, especially life expectancy.
To shorten this long story, on Wednesday Maurice took me to my neurologist who set me straight. I do not have a chordoma. I have a different type of tumor called meningiomas. Now no brain tumor is anything to sneeze at, but apparently, I’ve had this tumor for a long time because I’m told it showed up on an MRI that was done ten years ago. This was news to me. In those ten years, it’s hardly grown, if it’s grown at all. Sure, it’s still in that dangerous location and if it grows and starts doing some damage, surgery will be necessary, but right now it doesn’t look likely. Also, even if they do surgery, it’s not as imperative that it all be removed. I don’t know, there may be recurrence, but nothing to the degree of a chordoma. I plan to live well beyond seven more years.
Despite the fear I went through, there’s some positive that came out of it all. Don’t take life for granted. Oh, I’m not going to be like Mother Theresa and spend my entire life helping the misfortunate. I’m probably not going to change things that much. But, I believe I’ll appreciate things more.
Now the negative. It’s only a negative, because it’s the way my brain works. I’m pissed off because I want closure. As it stands, I have this damn tumor in my head and as far as I know, it’s going to stay there. It doesn’t belong there and I don’t feel like having it measured every couple of years. I know, I know, but it’s just the way I feel. What did I just say about appreciation?
I’ve been gone a long time, so thank you for hanging on with me and reading this. I’ll do a general update on life next week.
40 comments on The Tumor
That would scare the bejebus out of me.
It did for me and I don’t even know where my bejebus is.
I was sad, horrified, angry and relieved all in 12 paragraphs! Whew. Glad you’re back.
I purposely wrote it so people would understand what it was like from my end. It’s good to be back. I enjoyed the two month break. I won’t be posting as much as I used to, but I think I’ll be popping in more often.
Man, that was a scary read! I’m so grateful for the mostly happy resolution. You deserve only good things!
It was scary. I kept thinking of you during the entire ordeal. You inspire me, and I’m sure many others.
Thinking of you, sweet one….you’re in my thoughts. Much love!!!!! The Captain
Lots of love back to you, Captain. I’m glad we reconnected. You were missed.
I was wondering where you were! So glad it it what it is, given the alternatives.
I’ve had to take some time off the blog to focus more on my manuscript. I will be posting more often, but it will be awhile before I’m posting as regularly as I used to.
I am glad that it did not turn out the way it could have. That would have had me on the ceiling! Glad you’ll be around for a while. It does make you just a little more humble, appreciative and grateful when something like this happens.
Humble is a perfect word for it.
So glad it was the slower kind. May it never grow to the point of needing surgery.
That’s my plan. Hopefully the powers that be will cooperate.
Wow! Scary ride. Glad things looking good. Xx
It was a scary ride. I still haven’t come down from it.
Can understand that. Don’t know if I would have handled it quite so well. Brave man.
So glad you made it through all that anxiety and fear and anguish of unknowing. I feel for you. It will probably take a while to process. <3 May you never need the surgery, or anything of the sort. May it shrink from the love of all those who care for you.
Joey, the last sentence literally brought a tear to my eye. Thank you.
What a scary experience. I’m so glad it the other kind that isn’t expected to grow. So much to be thankful for. And I’m so glad your back and will be around for a long time. I’ve missed you as I’m sure all your readers have. Know your readers love and appreciate you.
Thank you for making me smile, Journey. It’s nice to be missed
I was just thinking about you a couple of days ago, and about how much I miss seeing you around and that I hoped you were doing well. Sounds like you have had quite the experience! Glad it is nothing horribly dangerous. <3
I’m glad it wasn’t so bad either. Still confused as to what it is exactly (conflicting info) but it definitely sounds like it’s nothing like I thought it was.
I will place you in my prayers.
Thank you, Iggy
Oh my lord, I can’t imagine the anxiety. I’m also glad that it’s not the bad one and slow growing. (Also, crazy it showed up 10 years ago and no one told you!) Wishing you well <3
Yeah. I don’t know why I wasn’t told either. Still some confusion. My best to you as well.
Holy crapoli! How scary. Glad it’s not what you thought it was. And it’s good to see you around!
Glad to be back around, Hart. Hope you’re doing well.
Glad to hear it’s benign. Medicine has come a long way in its treatment of benign tumors and cancer, so any study or statistic looks back at the life expectancy under now outdated treatment.
Yeah, I think I’ve learned my lesson from this (we’ll see lol)
Bradley! What a shock. I’ve been away and saw a comment from Dyanne on Samina’s blog. I’m so pleased its benign and we have you for many more than 7 years to come. We’ve lost too many of our blogging family. So pleased you are safe and healthy. Sending you love xx
Sending love right back. Always good to hear from you, Pieces
Scary! But what a relief to know that you’ll likely be around for a good, long time. <3
Hi Ann. Good to see you around. It was a scary ride, but I’m happy the ordeal ended well.
I hade one also, had first surgery at 14 and 33 they removal 1/4 skull. Luckly no entry thru Derma and I’m fine. The plate used based moved over the with age. Take care.
Thinking of you.
Hi! Glad it worked out well.
I would love to reblog some of your post. Do you have your reblog button for a reason? Nasty Troll? I was hacked & stalked for six weeks, not 100% gone but not hunting me.
Unfortunately because I self host you can’t reblog me even if you see a button there. It’s the same the other way around too. Only way is to either copy and paste my post or have a link. I’m fine with either one as long as I’m credited, but I know it is a pain.