Toasting a brain tumor

Four years ago, my brain tumor returned. They’ve been watching it until some new technology was approved for the US. It was approved and two of the pieces of technology came to the US in late 2016. One of them in Buffalo, NY. That’s where I’ll have radiation to fry that sucker once and for all (hopefully) on Friday, August 25.

It’s a benign tumor in a not so great spot. Basically it’s a non-acoustic skull-based schwannoma that was once on my hypoglossal nerve (tongue nerve) and is now headed towards the brain stem.  Basically, it’s a tumor in the smack middle of my head where it’s hard to get to.

Fortunately for me, it’s a slow grower.

Unfortunately, it’s in dangerous territory. So it’s gotta go.

I had a craniotomy in 1999 and again 9 months later in 2000. It was removed successfully in 2000 and I had cranial reconstruction in 2003.

The 2000 surgery was an infratemporal, subtemporal zygomatic osteotomy. I love saying that. It sounds so important. In short, they dislocated my jaw on the left side and took my face apart to get at it and I have titanium bolts in my left jaw. I wear a hearing aid in the left ear due to hearing loss in that ear. It did hurt like the devil after, making this one on Friday seem like a freaking piece of cake. This one is outpatient.

The technology is the Gamma Knife Icon. We have a Gamma Knife in Richmond but it’s not an Icon so therefore not approved for tumors as deep in the head as mine is or as close to the brain stem. (I think I got that right).

The Gamma Knife is the most poorly named piece of equipment ever. They should have called me considering how many things out there I have named in my advertising life.

There is no “knife” involved. It’s just super fancy radiation. Basically it shoots all these tiny weak beams into your head and collectively they converge in a single place and render the tumor lifeless. Toast. So it eventually shrinks and dies a slow and humble death.

As coincidence would have it, I wrote advertising for this technology back in the early 2000s. I remember the headline. “Have brain surgery. Be home in time for dinner.”

Usually, it doesn’t take long but since mine is so deep they want to go weaker and they think it will be 2 hours. Fitting the frame is likely to take the most time. I’ll be drugged to keep me still.

You have about a one in 5 million chance of getting this type of tumor. As a result of it being rare, the insurance company is always rejecting just about everything related to it.

So hours after booking my flight and hotel, having called twice to double check in May and make sure it was approved and being assured it was, they had a last second change of mind and sent me three letters of denial telling me it was “experimental.”

Having gone through this multiple times with insurance companies before, I let my doctors make the appeal. Finally, it was approved. Nothing like a little brain tumor drama the day before you leave. I forgot to tell Richard, my oldest son, so I talked to him yesterday.

I remember a conversation in the car with Charles one time a few months before he died and he was so wigged out about this tumor. It had literally been years since I’d told them about it. I had not even thought about it and had to put invites on my calendar to remind me to have my MRIs having inadvertently missing a year (not proud of that oversight).

I had just taken Charles to the psychiatrist and he surprised me. He was worried to the point of panic, making me feel bad for having even mentioned it three years prior. I could have kept it to myself since we weren’t going to do anything for a while. I was shocked.

After Charles suicide, I found so many messages and songs that related to this tumor.  For some reason, it’s that last conversation that keeps playing in my head. I still see his profile and the way the turned and talked at the passenger window at moments during our conversation. And now he’s not here to see the outcome.

He thought I was going to die and he’d have to suffer the loss instead of the other way around.

Grief: Going all ‘hallmark’ on you

Published by

Anne Moss Rogers

I am the mother of two boys and the owner of emotionally naked, a site that reached a quarter million people in its first 18 months. I am a writer and professional public speaker on the topics of suicide, addiction, mental illness, and grief and currently working on getting a book published. I lost my youngest son, Charles, 20, to suicide June 5, 2015. As talented and funny as Charles was, letting other people know they matter was his greatest gift. And now the legacy I try and carry forward in my son's memory.

30 thoughts on “Toasting a brain tumor”

  1. I am praying for you. My faith in the victory over this is as strong as it’s ever been! I pray victory and I also offer you my time, should you ever need or want.
    Love you much AM!!! So much!
    Summer

  2. Anne moss you are in my thoughts and prayers. I know how strong you are and know things will be ok. Hugs and prayers to you Randy and Richard.

  3. Wishing you all the best as you go through this procedure. My thoughts have been with you and your family ever since I was Richard’s first grade teacher all those years ago. Give him my best. Keep us posted on your progress.

  4. You’ve got this! You seem to be one of the strongest people on this earth. God did that for a reason! Very interesting how you describe the processes now vs then. Wishing you a speedy recovery with a lot less pain. Take care of you. Bless Anne today and always.

  5. Reading this after midnight on Thursday so thinking of you and your hotel or hospital room in New York. You are an incredibly strong woman and I hope this will be closure for you on this terrible medical situation enabling you to move forward focusing all of your Energies and helping those like Charles and other families like yours. Love and prayers to you and yours, Anne Moss. <3

  6. Had no idea you were have his done Anne Moss. And, yes you could have come up with a more colorful descriptive name to call the technology…like “The Anne Moss Fry that Sucker Process”! Good luck, be thinking about you tomorrow. With your positive energy, everything will be fine. Take Care, Love ya sis, Jenny

  7. I never knew about these health conditions that you have. I’ll say a prayer for a successful outcome to the Lord. I hope this is the last appearance of this tumor. We will be awaiting the results from you.

  8. That is heavy. Gotta be scary. I’m pulling for you. The “other way around” thing. That always sucks. Also in 2015 the odds of dying by suicide was 13.26 in 100,000 or .01326%. And greater odds of it being your family member. Your brain tumor is 1 in 5 mil. How come we can hit those jackpots. I can’t get one number in the Power Ball.

  9. Wow! I had no idea. Brain tumors are a special breed amd I don’t mean that as a compliment. Having dealt with my moms tumor/cancer since March 2014 I can appreciate how Charles was feing that day. Her Craniotomy was THE longest day of my life. Healing thoughts go with you to NY as they toast that sucker to dust! Here comes a virtual hug!!!

  10. Talking about our tumors brought us together, I believe, in 2000, at the gym! Still remember it like it was yesterday. This one sounds non-invasive, thank God! Will pray for Randy & Richard; usually hardest on them.
    Lois

  11. Wow anne…lots of prayers, hugs and speedy return back home a winner and successfully ‘toasted’
    I read something the other day ‘you have been given this mountain to climb so others can see it can be done’….just like this club we were inducted in to that we never wanted to belong to!…u amazing!

  12. Good God, A-M! Someone up there thinks you are pretty freakingly amazing strong….and you are. My prayers go with you to NY–and so does much love. Liz

  13. You will climb this mountain like you have so many before. You are a pillar of strength to all of us who know you and all of the good work you do for others.
    Safe travels, good wishes and return home soon.
    Kathleen

  14. As you know, we know the brain tumor journey. We’ll be praying for you–for peace in the process, for the Icon to be all it needs to be and for that nasty invader to be gone!!! Hugs, dear friend.

  15. Wow! Will definitely say a special prayer for you and your family not only that all goes well, but that insurance does its job! We shouldn’t have to beg and fight for what we need. We pay for it with our premiums and they should stop all the BS and do what needs to be done. I recently begged and begged for them to keep my son in rehab after detox and they wanted to try intensive outpatient treatment first. He tried to kill himself a few days later. Only after that, they have approved in patient! It shouldn’t be this hard to get the help, medicine and hospitalizations we need. It isn’t a fight anybody needs going thru during an already difficult time. God Bless you, safe travels and prayers for the death of that nasty tumor! XOXO

    1. It was far easier to get this approved for the tumor than anything we had to do for charles. Anything for him was always denied and he e paid out the wazoo. Thank you. At least in this case I have medical professionals going to bat for me.

      1. Praying for you! I’m so sorry this is back and you are going through this. You are a warrior and have so many praying for you. You are one-of-a-kind, your fight, determination and positivity are truly remarkable and admired.

  16. We truly do not know what each day holds. Life is a precious gift. Many of us, as parents, never thought our children would predecease us. Hard to grasp. May this surgery truly make that tumor “toast”!

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