I've been using The Facebook loosely as my blogging site. I'm getting to the point in this journey that I need to start journaling on a regular basis for the sake of my sanity and help work through the depression that seeks to bring me down.
I've been dealing with this damn brain tumour (fancy UK way of spelling tumor) since April 2017. It's now November 2018 and I feel stuck. I feel like I've gone backwards even. In no particular order, here's a list of
- 70 lbs weight gain - yep sevent-ty (gained 30 of those in one month, not pleasant) - Thank you dexamethasone
- Gained so much weight that I had to have my wedding ring cut off my hand and resized - This was probably one of THE most depressing days since all this shit started
- I have lost all of my hard earned fitness! All of it! I could ride a bike for a hundred miles. I could hike for 17 miles. I ran a marathon. I trained for a fucking Ironman! (that shit is hard!) Gone, gone, gone.
- I can't bend over and tie my gawd-damn shoes with out getting winded.
- I've had to buy all new clothes. No fun. I hate shopping.
- I've had to buy all new work out clothes. Which is even more depressing. It's like they don't want fat people to work out or look cute when they work out.
I've tried for an entire year to get off the steroid (dexamethasone). I have a true love/hate relationship with this drug. It saved my life. It helped get the swelling down before surgery, after surgery, during radiation and so on. However, I can't seem to get off of it completely. And this is how I gained my latest 10 lbs. Working (ha!) with my Endocrinologist to get my off the Dexa, she put me on Hydrocortisone as a plan to ween me off one, then ween me off the other. It didn't work. I'm right back where I started, plus 10 more fucking pounds.
(Oh and if you don't like swearing, you probably won't like my blog. You've been warned.)
I have been let down by the healthcare system! What a fucking joke!
After surgery and after radiation and after the tumor is stable.... it's like I don't matter.
The Scripps Health doesn't have a Neuro-Oncologist (NO) in their entire San Diego system. Not a single one.
However, UC San Diego Health has TWO and one of the specializes in my rare type of tumor... Ependymoma.
So, I made the switch.
He seemed nice enough, interested in me. But since my tumor presented as "stable", there was really nothing else for him to do.
Me: Ummm... what about the debilitating daily headaches?
NO: Oh, those? Not caused by the tumor.
Me: What do you mean they're not caused by the tumor?
NO: The brain doesn't feel pain, so your headaches aren't caused by the tumor. You should see a neurologist.
Me: You ARE a neurologist!
NO: You should see one that specializes in pain management.
Me: I had these same headaches before the surgery, with the tumor.
NO: The tumor is stable. Your headaches aren't caused by the tumor.
Me: How is that possible?
NO: It could be caused by all kinds of things, but it's not the tumor.
Me: wtf
So I made an appt with a Neurologist.
My lovely neuroligist took one look at me and saw me as a walking migraine. I told her that I've had migraines since I was a 8 and the headaches that I get are not migraines. Wow, that pissed her off. Folks, the fastest way to piss off a doc is to tell them that you know more about your body than they do!
I had tried all the migraine meds, triptans, prentatives, etc. They did NOT work (maybe cause I didn't have a migraine?) So, I was a good candidate for Botox injections, but I had to be diagnosed as having migraines. Fine, call it whatever you fucking want, just gimme some of that botulism!
The first dose seemed to work! For 8 of the 12 weeks I felt some relief. Not complete relief. But definitely fewer headaches and less intensity when I did have headaches. Which translates into less need for the Percocet. Ohhhhh.... Percocet.
I'm gonna take a moment to talk about the fucking "opiod crisis". People like me are getting fucked over because there is now a fucking bi-partisan platform for the politicians to stand on and rally behind.
I do NOT like taking Percocet. I meticulously track every fucking dose I take. I am very cautious and personally terrified of becoming addicted. And because of this, I have put myself through more pain and suffering than needed. My husband had to finally put his foot down. He didn't want to keep seeing me suffer. So, I take the Percocet. Oh... this is funny too. The neurologist told me that Percocet doesn't work for migraines. Her words, not mine. Funny, the Percocet helps the headaches that I have. Does that mean that they're not migraines then?
Soooo.... every time I ask for a refill of my Percocet, I feel like a fucking junkie asking my dealer for my next hit... or however that shit works.
I have a fucking brain tumor. I have fucking headaches. I'm in pain every fucking day. Every. Fucking. Day.
Please, sir, may I have some Percocet?
You know what else sucks about Percocet??? Constipation!!
Every time I take a shit it's big deal now. Kinda a like a two year old learning how to use the potty.
"I pooped!"
Not even kidding.
OK, back to the "ists"... I have a Neuro-Oncologist, a Neurologist, and an Endocrinologist.
All three are a part of the UC San Diego Health system... all three can't seem to be bothered to actually speak to each other about me.
As I was trying to get off the dexa this last time and things were getting worse with the headaches, I reached out to my Endocrinologist first, since she was now in charge of my steroids dosages and I wasn't to increase the without speaking to her first. I sent her a message letting her know what was going on.
She actually asked me why I had just had an MRI and if it was possible that I might be dealing with migraines. Either way, that my headaches probably weren't related to the decrease in the dexa.
I'm not even kidding. She couldn't take the 5 mins to look at my chart and see that my MRI was done every 3 months to keep an eye on my FUCKING BRAIN TUMOR and that I was on Botox for the other DX (diagnosis) of MIGRAINES.
Seriously, this is the "group of caring doctors, working together, to support me".
Luckily, I had finally found an Internist at UC San Diego and I had hoped that she might be able to help me navigate the system a bit better. (Sadly, this was what I had expect my NO Team to do.)
She's been very helpful. She's reached out to my "ists" and tried to get straight answers from them. I can tell she's been surprised by their lack of involvement and how strongly they stay in their "lane".
For example, I had an appt with my Neurologist (the pain doc) and she saw me lose my balance. She even made a comment about the fact that I lost my balance. And that was it. Nothing else.
It had nothing to do with her giving me botox shots or headaches so she wasn't gonna touch it. So, neuro tests to see what might be going on. No nuthin.
I wake up in the morning and check in with my brain... does it hurt already? Sometimes yes, sometimes no.
If yes, will my morning meds get the pain under control enough so that I can go in to work?
If no, will it stay that way after I get out of bed.
That's how my day begins. Pain and pain management dictates may day.
I do have the ability to work from home when needed. It allows me to spend energy on my job instead of doing my hair and makeup and getting dressed. Which takes a LOT of energy. If I'm in more pain that usual, I'll need to take an evil-Percocet.
I found this great blog post about dealing with chronic pain and how it sucks the energy out of you and how you have to be careful with your energy stores throughout the day. I share it with anyone and everyone that might be struggling to understand what it's like. Either as a friend, caregiver or the person going through it.
The Spoon Theory
My family and friends now know about "spoons" and we talk about if I'm running low or if I need to conserve for a big event. Like my daughter's school play.
On top of "spoons", I have a problem with sound now. Certain sounds are painful. Opening a soda can - Ouch! A door closing, slamming - I jump. More than one conversation at a time, I start to shut down. I carry earplugs with me at all times. An overload of sound will trigger a headache.
The other thing this tumor has taken from me is my identity and self-esteem. Did I mention I got FAT? People that haven't seen me in awhile don't recognize me. It's crushing. It's happened to me several times now. I've said "Hi" to someone and they have no clue who the hell I am. And I have to actually introduce my self. I see the look of confusion on their face and it just kills me. I just want to say, "Yep, I got fat. Brain tumor."
Because of this, and without realizing I did it, I've isolated myself from some of my friends. I just don't want people to seem me like this... and I just don't want to see that look of confusion on their face cause they don't recognize me.
How weird would it be if I walked around with a sign or wore a t-shirt that showed pictures of "Me". The real me, the before me, the NOT fucking FAT me.
Yes, I know, I'm happy to be alive. I am really. But FUCK.
Facing your mortality in your forties is bullshit.
I'm supposed to be doing a totally different kind of suffering. I should be in pain for completely different reasons.
I should be training for some crazy ultra distance trail run. Or getting my nerve back up to attempt an Ironman.
And then there's the "I'm alive". Yes, but for how long? I have a fucking brain tumor in my skull! They couldn't get it all out. The radiation was only to make it stop growing, maybe. It can come back. It can come back in my spine. I get MRIs of my brain every 3 months to watch this fucker to make sure that it doesn't. I get full spine MRIs once a year to make sure it doesn't show up there.
Then there's the burden I've put on my family and close friends (my extended family). I think about the kind of shit they're going through. My husband has to watch me suffer. That sucks. My daughters see a Mom suffering instead of being the strong Mom that she used to be. My parents see a Daughter who might actually die before them. Think about that. That's some fucked up shit right there.
OK, I think that's enough emotional dumping for the day.
Well, except for the fact that through all of this bullshit, cause let's be real, this is some serious bullshit, I have the most AMAZING people in my life!!!! During the first four months of this crap, I was not left alone a single day, not even in the hospital. Every single day my family and inner circle of friends have been by my side. I am truly grateful for them. There are people going through a similar journey as me and they are not a lucky and blessed as I am.
OK, now I'm done for the day. I hope to do this more often. More for my sanity than anything else.
Feel free to read and share. Maybe someone else has a "me too" moment and finds some comfort in that.
Lizzie
