So I hadn’t planned on a pre-Labor Day update without all my test results, I’m praying this doesn’t jinx me, but here you go – read this on the road!
In April I’d been going through a bunch of tests trying to get into a clinical trial (denied) and I got a call that I needed to get right down to the oncology office. This is a call no one wants to get.
My brain MRI came back abnormal. My oncologist told me I *might* have a brain tumor, but he wasn’t convinced.
Here is the gist of it “4 mm area of enhancement in the left inferior frontal lobe with edema. Possible metastasis. ” but no confirmed tumor mass.
Now you might recall I’m not a big fan of melanoma brain tumors, two having killed my dad two years before and the biggest was the size of an aspirin. I went completely off my rocker.
Alan was on a plane somewhere, I dealt with my kids with my game face on, and contemplated “the thing in my head” as we came to call it. Immediately it had become clear to my doc that the words “brain tumor” or ” brain met” were not allowed unless he had plans to sedate me and have me carried out of the office.
It was my little brother’s 40th birthday and he sounded so happy on the phone, his wedding was coming up and all was perfect.
One of the hardest things about cancer is making decisions on how much information to give, to whom, and when. Also, it’s one of the ONLY things about cancer you can control. I can’t control my disease, but I can keep it from ruining my brother’s birthday or his wedding. I’ve developed handy points to consider, should you need them:
– you have people who love you, especially kids, but you have nothing definite, but only probably, and really scary things, to tell them
– the news you have will send everyone you’ve ever met into RED LEVEL freak out mode
– someone in your inner circle will override your wishes for privacy and/or insert themselves into your medical decisions. For example, trying to talk a nurse into 1960s era medical procedures to perform on you, post childbirth, and all you catch of the conversation is “I think that is illegal now.” “That’s such a shame, couldn’t you try it on her anyway?”
– is it a close family member’s major birthday? Any impending weddings or other major celebrations??
– Doc keeps insisting he is not convinced it’s a tumor (like what else would it be? maybe just a great idea brewing – like the one I had for the light up, inflatable lawn Easter crucifixes ( 2 models – with or without accompanying thieves))
– Doc insists it is too small to find and treat with radiation, he is NOT CONCERNED about it, and he believes the drug you are about to start taking will get rid of it.
– you’ve already given it a dumbed down nickname just to wrap your mind around it.
– another family member died from the same thing.
Be sure to check back for my “Top 10 things NEVER to say to a cancer patient”
I made the decision that we would not tell about “the thing in my head” and of course Alan stood by me. Although I might have lied a couple of times, mostly I am an excellent subject changer. I’ve come to realize that we really want to believe things will be OK for people we care about. I stand by my choice that it was the right thing to do. If you don’t agree, you should see the wedding pictures.
Fast forward to June. Scans show “the thing in my head” is getting better which is my entire interpretation of the brain MRI report sent by Vanderbilt radiology/legal dept. also, cardiac tumor is shrinking. Awesome!!
August 29 -> got a first ever email from my oncologist with results the night of my MRIs. My brain is ALL CLEAR and the cardiac tumor is down to 7x9mm, smaller than when they found it. Another first, got a congratulations phone call from my cardiologist. Our daughter asked us point-blank, “Was your brain not all clear before?” and that’s how the telling started. Really though, it is a huge relief.
Tuesday I get my PET (whole body, bones, innermost thoughts) scan results so then we will see what happens and when I know the whole picture I will update again. My PET scans are notorious for finding things that half the time require another scan, then turn out to be nothing. Like a crusty, barnacled egg breaking free from the chemo-hardened reef known as my ovary. Whatever it is, we will deal with it. Certainly though, it can’t be as bad as all this.
Today I am incredibly lucky and blessed to walk 2 miles at the Y, take my kids to school/soccer/cross-country, etc., and relax and not worry for a few days. Zelboraf is not a cure but it has bought me good, quality time and for that I’m extremely grateful. I am at peace with whatever tomorrow brings, and for me, that is the best place to be.
I’m thrilled to say Team Willett has raised $1000 for MRF so far and lots of people plan to walk with us. Please help us find a CURE because you know what, this ain’t easy people.
Have a wonderful, wonderful weekend and Peace to you all
– Amy – 2 1/2 year Metastatic Melanoma Warrior and Blessed Beyond Belief.