Wednesday, July 20, 2016

Rarely are things black and white with scans. It's pretty subjective and it's own art form. 

Results for kiddos are in. I'm going to tinge this way over optimistic with a slight shadow of caution because that's just how I need it to be right now. 

Bella: Gets the prize for only kid with nothing weird commented on. Ironic, I know. For Mallory MRI bingo players at home- we count this as an all clear. Or unremarkable which is the only time Bella is encouraged to be unremarkable. 

Lily: Will have a follow up with ortho so they(the bone docs) can weigh in on the slightly growing(small) spot in her humerus. No one is concerned and everyone except me was content to wait and scan in 3 months. Fortunately we haven't been to orthopedics in a few years, so I cannot say how good they are and her oncologist is humering(pun-get it?) my concerns. I can be just about positive they have no knowledge of LFS. I do have a couple emails out to specialists for my own sanity. But hoping this is just a quasi normalish benign something or other we only see because we scan regularly and cautiously. The good news is nothing was concerning on Xray- but LFS cancers tend to be weird. It basically is for my sanity. I know we can't be sure without cutting into her- and I am not prepared to do that yet- but I would like more information. Everything else looks good. Thankfully. 

Kiera: Has a Baker's Cyst. Nothing to do with cakes at all. or baking. It's a little pouch of something or other behind the knee. She has no complaints- most likely something we wouldn't know about but because we scan, we do. So other than that- all other areas unremarkable. Again ironic- but what we shoot for. We love unremarkable scans. 

Phillip; Still has a stable arachnoid cyst- unchanged, not a problem. He does have a spot on his humerus head(aka shoulder joint) that was a little hyper intense. He is a pretty intense kid and tortures his shoulders a lot in workouts- He has a routine appointment for diabetes on August 1, so I will talk more in depth to the docs about it then. I do not think it will require follow up, if anything we may X-ray or check on it with MRI in less than a year to compare. All other areas- unremarkable. 

Now Me: The PET was good. PET/CT monitors for active metastasis in the body - and I got no progression/ stable.  It is good news. The brain MRI was not so reassuring. Hence- it was remarkable. and not in the good way.  There is some growth in boobie the cerebellar brain met. It is only a couple millimeters, so that is good if we are going with overly optimistic. We are- I told you that earlier. What we don't know is what kind of growth. It looks like radiation necrosis, which is when healthy tissue around the tumor(or tumor) dies. It can cause swelling-which there is and symptoms- which I thankfully haven't had.  The only way to know for sure is brain surgery and I have major PTSD about brain surgery. I also have an aversion to death so at some point we will have to make the call between a tumor and a tough place.  Needless to say I've been a little liberal with the anti anxiety meds this past week and taking lots of walks. And lots of tears. The kids know something is up and I reassure them this is just normal follow up with less than great news- because in mets world it is. It's not an emergency and the professionals are calm. Because they are professionals. I on the other hand have no license and can freak out as much as I damn want. Which I try not to but the freak outs seem to find their way out in the form of watery deluges of my eyeballs.  We did MRI spectroscopy on Tuesday- the idea is to try and get a chemical signature from the tumor area to see if we can get any more information. The best way to treat necrosis, progression, or new tumor(the 3 things it might be) are all surgery. The information from the MRI will maybe tell us if we can give steroids a shot to reduce inflammation, but the likely result will probably be surgery. Maybe not- I like to keep it weird but also real. I have NO idea about timeline so please don't ask. 

I have treatment next week- will check in with the docs then- right now just managing stress and the kiddos' last couple weeks of summer. Not one of them has yet to say they are bored, which was my only goal this summer.  Little shitheads can't even complain of boredom for their poor mother(sarcastic tone- I'm ok with this, we all need lots more down time). This will be a standard- wait and see and hope things don't get worse- situation. And during this time I keep busy and it's tough to be social. Sometimes all the normal things are a blatant reminder of how quickly this could all change and the independence I might lose. One of my biggest fears is being a burden. A simple thing like planning something in a few weeks instigates a panic attack. This is the journey, this is not new. And then I get mad at myself for any time wasted on stress, but sometimes the grief and fear seep in. I think it's best to try and deal with them in manageable bits instead of letting them fester. Hence the walking and meditating and when all else fails, meds.  It's one of those times I just batten down the hatches until we know more or need to do more and adjust my priorities and keep stress to a minimum. Hahahahah. Optimism. And along those lines- a friend posted this last week and it about sums it up. 
Ironically by- the dry ginger. 

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Lily Kay Monkey

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