Thursday, February 23, 2017

Unexpected but WONDERFUL. No Malignancy.

I don't do surprises. Not a fan. You get pounced with cancer diagnosis after diagnosis and after awhile- surprise!! can be kinda scary. Not fun.

I never told the story behind the term- Rocket Surgery. I've mentioned I mix up idioms all the time- never shoot a dead horse, it's not Rocket surgery- which actually was inherited from our friend Rob after many Coronas in a young younger life- when wow things were simple and we thought they were hard and after a long week you could sit around with friends and drinks and watch your 2 year old split her diaper open and laugh like there was no tomorrow. Then those friends would help coordinate a surprise anniversary getaway for you per the wonderful husband's request. A simple note- pack a nice outfit, comfy clothes and whatever you need for a night away created absolute panic in me- I immediately called Leesa- what do you know? are YOU watching the kids? where are we going? She repeatedly denied all knowledge.   A night later and almost nervous breakdown complete- I had been treated to a most romantic night at Williamsburg, complete with in room jacuzzi and candlelit dinner by a window where we watched black swans canoodle by a lake.

Leesa may have mentioned for the sanctity of our future marriage that surprises cease. And henceforth and suchforth we pretty much limit the scare factor.

Today was my post surgery follow up. I know I feel good. I am floored at the minimal pain, dizziness and side effects I expected. Yesterday we ventured to school to see Lily and her friend sing the National Anthem for an assembly. It was exhausting and absolutely worth it.

We didn't expect a pathology report. They usually get sent out and take time(I guess we are 12 days out of surgery- post op time warp....)- there is a preliminary report and sometime you are exciting enough that they discuss you at tumor boards. We learned to be patient for results. Was not expecting the nurse to bring in the report and definitely not expecting to hear NO MALIGNANCY!

Phil grabs the report. There are words spoken. The fuzz in my head is the exact same as when bad news is delivered. That might just be because I'm healing from brain surgery. I prepared for the worst. It's usually the worst- yes we hope for the best- but it's never actually PUT on the table. Mutants do rare. We come to expect it. I don't know how to react. It is my second excursion since surgery and honestly making it to the surgery clinic made the legs tired and a little jello-y. I should jump up and down- this seems like a jump up and down moment but part of me doesn't believe it. God love some good old Catholic Guilt. I stick out my hand- Phil grudgingly hands the report to me. I will pore over it later- but for now all I see is the only thing that matters...
No Malignancy.

My surgeon comes in to check out the incision and gently plucks away the stitches. We just smile and shake our heads. This is good. He recounts the surgery for us. There was a lot of swelling. Like a really good thing we postponed surgery so he had another expert pair of hands there. One set was needed to hold my cerebellum inside my head. It reminded me of hearing the surgeon talk about Bobby's surgery and how his brain just mushroomed out and here I was a minimal headache and no dizziness and tumor evicted. He had to open up extra bone. I am even more amazed I haven't been in more pain. There are platinum plates- they won't set off airport scanners. It's ok- I don't do airport scanners- TSA feel ups are so much more fun. We discuss how you just can't predict symptoms, you do your best and hope for the best outcome. Phil and I forget to ask all relevant post care questions- they seem to float away. Steroid dose, salt diet, blood sugars.....eh just so floored by the results.  Minor considerations - little sharks to battle instead of the great white it could have been.

Radiation Necrosis. Scar Tissue.  Basically when we irradiated the Boobie toomah a couple of years ago(which we do not absolutely know was brain metastasis(cancer from my breast tumors) it could have been a new tumor- an angrier LFS mean nasty sort like my dad and brother had. It could have been dead tissue- the radiation did it's job but my body couldn't clean up the dead stuff(also an LFS problem). Or it could have been both- dead tissue AND the radiation caused a new angrier tumor(which happens a fair amount in LFS and was my big fear- these tumors do not respond well) . It could have also been breast cancer cells that decided to grow again and like that spot. There was a tumor. we zapped it. What was left got angry and caused swelling. It happens- to non mutants too. Again- you can't predict it and that is why we watched closely by MRI. Surgery was the right call. The swelling can cause big problems. This is why it is important to advocate. This is why it is important to have a good team and communicate each step. It's hard not to panic and to take the emotions out of it. This was hands down one of THE scariest things I have ever faced. One of the sweetest things a friend said to me was that she couldn't imagine facing this after facing all we had with Bob and Dad and knowing what I knew. I never forget all they went through and they have been especially close to my mind and heart over these decisions. It absolutely shapes my decisions. It is there with me, with my mom. with our family. That is Li-Fraumeni Syndrome. That is a testament to not only our family strength but all the other mutant families out there who have done this over and over and over.

This is not over. We will keep watching the area. There could be more swelling, more dead tissue and unfortunately there could be more tumors in the future.  I will go back to regular chemo, forever. Sooner than I'd like. BUT we battle this disease on the fronts we have and one very scary brain tumor front does not have to take priority now.

Now for you my friends and ardent supporters. Thank You. For the luck charms, the presents, the messages and hope and prayers. I feel them all and they keep us going and well if credit can be given for the outcome so far- those are the most logical reasons for it I can imagine. Thank you.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)