Ho-LY ……well, shite I guess. Has it really been a month since I posted?!
Okay, well, lemme think. Where to start? Hair is still purple. Ish. With some white showing on top. Perfect for Halloween!
Life has blown up. And these days I am of the opinion we are all living in some demented SIM/Matrix world? Game? And whoever is in charge of mine is FIRED!!!! And possibly dead if I figure it out.
I have been betrayed! All I can come up with was food poisoning, but oh my jesusmaryjosephmarklukeanddaniel my body betrayed me. Three days of rebellion and I will simply say it required A LOT of cleaning and culminated in me standing in the shower in tears pleading with God for control of my digestive system back. And now we must never speak of this again.
Medical stuff? I am thiiiiiiis I I close to throwing up my hands. I give up. I got all my tests and referrals done, saw the ENT surgeon, had the crazy sinus CT, she deemed my cyst too small for surgery and my deviated septum too slight to need repair. So, I took my crooked nose and off I went.
Labs and ultrasounds and referrals later, my pcm is determined to send me to GI because my liver panel was elevated, and my cobalt and chromium were also elevated. Yeah, they’re supposed to be. I set off metal detectors with my bionic hip.
And I had MRSA for 3 months. Go away. No GI docs, no more tests, no more poking and prodding, enough. I’ll live or I won’t.
I even gave in, went *back* in and convinced pcm-doc to finally do a chest x-ray and send me to pulmonology. Since my lungs seem to work when they feel like it. I got the report from the chest x-ray. Other than the calcium granuloma in my right lung that I knew was there, it says my lungs are clear. Oh, and there’s degenerative changes in my t-spine. I need a new spine. Paging Dr. Torres…..anybody??
Is that everything? I think? Hell I dunno anymore. Like I said, has it really been a month?? I’ve spent a vast majority of the past week retrieving my digestive system, but the 3 before that? School, house, kid, cats, tests, referrals. Yes surgery. No surgery. Oh, and an upcoming mandated pharmacy change because my insurance is full of assholes. So I don’t have a choice unless I want to pay for all my scripts.
It’s been a little crazy.
I am always telling my kids that energy cannot be created or destroyed, therefore the energy that creates a life never really disappears, it just changes.
Some very good family friends of ours just lost their poochie yesterday and hearing the news drew me up short, like it always seems to do. It doesn’t matter if it’s a friend, family member, furry family, or a friend’s family member, hearing of a loss, a death, always takes my breath away. Grief is its own thing, and every person grieves in their own way.
Lexie: Grief may be a thing we all have in common, but it looks different on everyone.
Mark: It isn’t just death we have to grieve. It’s life. It’s loss. It’s change.
Alex: And when we wonder why it has to suck so much sometimes, has to hurt so bad. The thing we gotta try to remember is that it can turn on a dime.
Izzie: That’s how you stay alive. When it hurts so much you can’t breathe, that’s how you survive.
Derek: By remembering that one day, somehow, impossibly, you won’t feel this way. It won’t hurt this much.
Bailey: Grief comes in its own time for everyone, in its own way.
Owen: So the best we can do, the best anyone can do, is try for honesty.
Meredith: The really crappy thing, the very worst part of grief is that you can’t control it.
Arizona: The best we can do is try to let ourselves feel it when it comes.
Callie: And let it go when we can.
Meredith: The very worst part is that the minute you think you’re past it, it starts all over again.
Cristina: And always, every time, it takes your breath away.
Meredith: There are five stages of grief. They look different on all of us, but there are always five.
~ Grey’s Anatomy, S6;E2 “Goodbye”
The crazy thing is the day before yesterday, we were installing new curtains in our living room and I was moving things around on my mantel. My dog’s ashes are in a wooden box on my fireplace mantel because we lost her 14 months ago, and I haven’t been able to bring myself to bury her ashes with a tree like we planned to do.
Dera, my Border Collie, passed away May 31, 2014 and we had her cremated. We had just signed a contract to have a house built so we all said we’ll bury her ashes with a tree in our new yard in the Spring. But Spring came and went, as did Summer, and I looked at my family and said “I can’t do it. Not yet.”
So, back to the story, I was moving things around as we installed curtain rods and curtains, and I stopped and looked at Dera’s box and thought about how much I still miss her. And then the next day, our friends lost their dog. Dera played with him. I’ve known him since he was a puppy.
I know there are no words when you have experienced a loss. There’s nothing you can say. When you’re grieving, the kindest thing someone can say is simply “I’m sorry”. I wanted to throw something at the next person that said “It’s God’s plan” when I lost my baby girl.
I know birth and death is all part of life and a life truly lived means you experience losses, but in the middle of it all sometimes it’s hard to try to figure out the reasons or the plan. It’s all just so absurd….
(Good Lord, has it really been a month since I published a blog??!!)
Yesterday was my follow up with my neurosurgeon and my oncologist in Georgetown. It was time for a follow up as I close in on a year post treatment, and with a ER trip courtesy of THE WORST migraine I’ve ever had last month, everything got moved up just a little bit.
Yesterday was also the day that my Dad died 3 years ago from Cancer.
So when I had to call my Mom a year ago and tell her that her only child has a brain tumor, you can imagine how much that sucked. She was brave and strong and supportive, but I don’t doubt for a minute that when she hung up the phone she cried and threw things.
I’ve made it through a year. An initial brain MRI (non-contrast, 6/09/14), a follow MRI to confirm diagnosis (with & without contrast, 6/20/14), the addition of a neurologist into my roster of doctors, and finally a referral to Georgetown last July. Once I was up at Georgetown and meeting with a neurosurgeon and a radiation oncologist, plans were made, options weighed, and soon a treatment plan was drawn up. I have a Meningioma.
I say have because it’s still there, but that part of the story is coming.
I have a meningioma, a type of tumor that is typically benign, and usually easily treated by removing the damn thing because it’s a type of tumor on the lining of the brain, or the meninges. But not mine. Nope. MY tumor is a meningioma, but it’s alllllllll the way under the fold of the brain, near the brain stem, and therefore inoperable. So my treatment plan was 5 days of stereo-tactic radio surgery, or roughly the equivalent of 30 radiation treatments.
I had the same mask made that Geena Davis’s character on Grey’s was seen in last season.
For what it’s worth, I have to say the making and wearing of the mask (designed to keep me in the exact same position for treatment each time) was the weirdest part of the whole thing. It’s just a bizarre experience going through the molding of the mask, and then the clipping down of it each time you go in for treatment.
So I had the mask made, did the treatment, survived the side effects, and moved forward, ending last year with a three-month follow up on treatment with another brain MRI, which showed no change. The last year of my life could be tentatively titled “Is The Damn Thing Going to Kill Me?”.
(I have spent A LOT of time in CTs and MRI machines over the past year. Good thing I’m not claustrophobic.)
Which brings me to now. Yesterday’s scans showed….say it with me….. no change. (Possibly my least favorite phrase in the English language now.) But my docs all said that was mostly a positive thing because that meant 1) they had, in fact, diagnosed a meningioma correctly (Dr. Collins: “If it disappeared, we’d actually be more concerned.”) and 2) it’s not any smaller, but it’s not any bigger, there aren’t any more tumors, and that means it’s probably going to just stay put from now on.
So, here we are. Me and…..Perceval? Harold? Irkle? He? She? It? needs a name since it’s me and this thing, likely for the rest of my life.
Today, I started processing this. This means it’s time to burn my mask, I think.
Yes, I saved it. I brought it home after treatment. It means I fought back and I survived. But Dr. Herman burned hers when she decided against any more radiation. I think I may do the same.
I fought. I’m stable. I’m alive. And I’m done with radiation.
“We don’t see any change in the tumor.”
The words no change are the most annoying and unnecessary jumble of letters in my life right now. I’m coming up on the anniversary of my tumor diagnosis. (Is that a thing? Should it be?) I’ve been through (pardon my language, but it’s oh so necessary) a fuckload of radiation that ended up being so much harder than I thought it would. Post-treatment scans said….wait for it….no change. So we keep watching. And we keep waiting. Because the surgeon really doesn’t want to have to dig that far into my brain.
You’d think that meant some kind of stability, right? I would, but it doesn’t feel very stable right now. I spent Monday night in the hospital with the worst migraine/tumor headache/I-don’t-even-know-what-to-call-it I think I’ve ever had. I have plenty of headache/pain meds at home and most of the time I can head it off before the pain in my head reaches unacceptable levels. As any chronic pain patient will tell you, there are truly only two kinds of pain….tolerable and intolerable.
But everything ramped up so fast and got so far out of hand so quickly that I had no other choice than heading off to the ER.
I had taken meds at home trying to get ahead of the pain, and as I was finally taken back and able to be treated, the doctors and nurses tried dose after dose of some pretty heavy pain medications, anti-nausea meds, and she even threw in a dose of Benedryl trying to get something to affect the pain.
Hour after hour, dose after dose, attempt after attempt to beat the pain down. My pulse was varying between 108 and 118. My blood pressure was all over the place. I could feel my heart pounding in my chest and the nausea left me curled up into a ball.
Finally the doc decided to do a head CT to see if something else was wrong or the tumor had….I don’t even know what? Grown? Moved? Invited friends?
Nope. No change. “It just looks like the tumor is causing pain. We may have to admit you for pain management.”
I didn’t know what to do. I was laying there in so much pain, fighting so hard. But you wouldn’t know that just by looking at me. The truth is, when I’m “just laying there”, that’s when I’m fighting the hardest. I kept telling myself to breathe. I thought of the tattoo on my forearm, ana’laigh, Gaelic for “breathe”. I played through scenes from Grey’s in my head. I tried to remember lines from the show (did you realize that in the very first episode Richard tells the interns that “the 7 years you spend here will be the best and worst of your life” *but* in the last episode he tells the new interns “the 5 years you spend here….”?)*, and I had Drifting Further Away by Powderfinger playing in my head.
I fought back. I got the pain back under a 4 and my pulse back under 100, so I asked to go home. But for the first time I was standing on the line between being hospitalized for this damn tumor and being able to go home. Fuck you, tumor.
And of course, I was blogging all of this in my head. As a writer, beneath and beyond the pain, that’s how I survive.
*I’m a hopeless Grey’s fan, don’t judge me! 😉