Within my mind is running a constant ticker tape with one sole word repeated over, and over...and over:FUCK.
But first things first.
I did not get quite the news that I had been hoping for yesterday at the doctor's appointment. I feel horrible for not updating as soon as I knew, for all my dear friends that were so very worried...
It was all I could do to hold things together the rest of the day. Came totally unglued a couple of times to be totally honest, but it was so very hard. I had to try and keep up the illusion that things are all okay at the very least for my kiddos, but for my dear Ed too...I have to be strong. I have no other alternative now.
The PET scan showed 4 lung mets. Three in the right lung, one in the left. All of them hot and "highly concerning for metastatic disease."
Needless to say that this was a HUGE BLOW.
But there was more...
"A large metastatic lesion within the left sacrum" along with another "metastatic lesion within the proximal trochanteric region of the right femur." Gawd...my lower spine/pelvis and my right upper thigh bone...
I just don't know what to say. I don't know what to think. I don't know what to feel other than terrified of whatever lies ahead. But the thing is, I have to make myself get over this fear quick...I have to toughen up. Brainwash myself that I am going to kick some ass. I have to...I don't see it any other way.
SHIT.
But first, I have another test; an MRI this Thursday to verify these spots in my bones. I keep telling myself the same things over and over. PETS are notorious for false positives. This nagging pain the very lowest part of my spine that I have felt for the last month could very realistically be due to a muscle injury or anything else for that matter...Inflammation? I know that lights up a PET at times too...
Just got to hold my breath a little longer where these new spots are concerned. At least until I find out what this MRI says.
Overall, the oncologists main recommendation is for IL-2. He believes that with my being young, generally healthy and strong, I am physically able to withstand the treatment. He did warn me that it will be very tough, saying in his accented English that I will "be sick like dog" for a few weeks. He said while systemic chemo and the IL-2 have about the same complete response percentages, the IL-2 apparently has the longest durable response.
I have to decide soon. Even though my lung tumors are small, still, there is no time to waste.
But first, this MRI.
If this MRI confirms bone metastases, then I will have to have radiation treatments to those areas before I start the IL-2.
Wow. I am so at a loss...I am reeling, my head is spinning, my guts just dropped to the floor, my heart is in my throat....there is that constant lump that stays lodged there, no matter how hard I try to dislodge it...That lump that always means that a sob wracking crying jag is imminent.....
But somehow, despite all of this, I have to find the strength within me to fight this thing, no matter how daunting it seems right now.
And fight like hell, I will. Fight like I never have faught before.
11 comments:
Oh sweetie...I was so afraid of this when you hadn't posted yet. I'm really not a cusser but...shit, shit, shit. I don't even know what to say right now...just want you to know that I care & am thinking so much about you right now....praying over you right now!!!!!!!
Love you -- BIG HUGS!!!!!!!
Amy Jo
DAMN!!!! I was hoping that you and Ed were out celebrating last night. That the PET didn't light up. That you could pretend all was normal for another month. SHIT. I am so sorry. I don't know what you are going through. I couldn't imagine. But I am giving you a great BIG cyber {{{{{HUG}}}}} right now. Stay strong when you need to, but give yourself permission to let it all out, as well. I just hate this. Please know we are all thinking of you.
melissa
Shannon,
Just had you on my mind an awful lot lately, damn girl, I hate this! I too am sending out some huge hugs, and big huge prayers for you all. If there is ANYTHING ELSE you need, you ask. Here for ya!
Misty
Shannon,
I'm so sorry to hear this!
Like Amy Jo, I'm praying for you too!
If we were close by we could do so much more to help! That is really frustrating, when you know you could do something to help, but too far away!!!!
Jenny Barton, AmyJo's sis
Dear Shannon,
I already responded to your post on the main board but after reading this I have to echo Melissa by saying that you need to give yourself permission to let it all out as well as being strong. I know you want to be strong for your children and Ed and I think you are incredibly strong but I believe that it's important to not feel like you have to be strong all the time. I know with younger children you can't totally lose it all the time around them but sometimes it's what doesn't get said that scares chidren the most. No one can decide for you what your kids can and can't handle. You know that better than anyone. I wish there was something tangible I could do for you. This totally sucks but my hope is that you'll find exactly the right combination of treatments for you.
As ever, Carver
Shannon,
I've been following your story on the MPIP board for a while now. I'm so sorry to hear this latest news. As I told my dad when he advanced to Stage IV: "well shit, fuck, and goddamn". I know all too well the rage you're feeling right now. Go with it...it will help you in the days to come. I can understand your fear and that's ok too. There really is no right or wrong way to react to this news and the fear it brings with it. Surround yourself with those who love you, do things that make you smile,
and don't panic. You still have options. This isn't the end of the road by a long shot. Keeping my fingers crossed for good news about your scan on Thursday.
My sweet friend,
I am at a loss for words and that rarely happens as you well know..my heart is breaking for all that is ahead of you and yet I know that you will somehow find the strength to do what you need to do. I concur with Carver about your children and how much to tell them or not tell them but I know tht kids always know "something" is going on and that is their biggest fear..it's "something" but they don't know what and only you and Ed can decide when and how much they need to know..and, like the others do let yourself feel what you feel and when you feel it..this is tough, too tough, so tough I can't even imagine what you are going through. I am here for you as always and I certainly wish I were closer to help in a concrete way. Love you and praying for you..big hugs every single day..sue
You know, a big ugly cry complete with snorts and sobs and gulps and a little drool is not necessarily a bad thing. Let it out and then get all those fighters inside there ready.
I think melanoma picked on the wrong girl.
All the love and positive stuff I can muster is coming right at you!
K.
oh shannon - i am so sorry, i can only imagine how this must have definitely been like getting like a mac truck
i know you so wanted to hold onto the hope that MAYBE it wasn't really true..but then to find out it may be even more mets
i know that you are scared for ed & the kids - for what will be for them if the worst comes to pass, love them the best you can NOW b/c that's what's going to help them later that and the assurance that you are secure in your salvation and will be together again
for now focus on the fight - yes it will suck and yes it will be hard, but you lady are one bad ass mother fucker..you WILL get through it
there are tons of good IL2 tips on MPIP - i know charlie s has posted a long list
i hope the MRI is okay and you don't need rad. - just one more thing to add to your already full plate
i'll call soon - don't want to intrude - YOU call me whenever you want
i am so so sorry, this breaks my heart and scares me to death - I do not want to lose you, but I KNOW this can be done - we've seen people do it and gain years of disease free time
so put on your battle armour - remind me to send you the verses in the Bible about the armour of God - and kick some ass
love,
Amy
Hold onto hope because medicine is changing all the time. They have pretty good treatments now and who knows next year could be the kicker.You're young and you can do this.Don't give up even if it gets hard cause you never know what's around the corner.Your kids and hubby will be fine.You need to think about yourself and do what it takes to kick mels ass- Martine
Dear Shannon, I'm a long time lurker on the mpip board, who very rarely posts. Just wanted to send you positive thoughts and let you know that your blog has been read across the other side of the world ( New Zealand) You have a huge talent for putting into words what most melanoma patients feel. I found your blog one of the most moving, honest ones I have ever read.
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