I’m trying to kick up my exercise again, because surgery last month put a wrench in things.
crazily, luckily, I got a quick walk in yesterday (I should be doing more intense workouts, but I’ll never stop being surprised at how much walking challenges my brain/balance, etc.) I was pondering about my life (blergh!) and I realized: WOW. I HAVEN’T HAD ANY COWDEN SYNDROME STUFF GOING ON THE LAST LITTLE WHILE. (Granted, surgery. But that wasn’t CS related technically.)
I felt like a normal person! Albeit, for about 15 minutes. But, still I’ll take it.
Because then I remembered I have my brain scan next month because gangliocytoma. And, while choosing to have the prophylactic hysterectomy in 2013 helped tons (no uterine cancer here baby!), I still have to get a clinical breast exam every few months, in addition to the all the other scans.
I guess this is part of what life entails, right? Little moments of breathing in between the big stuff.
Or in my case, the big brain stuff.
I’m having surgery tomorrow.
You know, I swore that after my last surgery (the hysterectomy) that I would NEVER have another surgery. Never ever.
And, yet here we are.
For the record, thankfully it’s not on my brain or my breasts.
It’s time to say goodbye to my gallbladder.
Catch you on the flip side friends!
What other choice did I have? I couldn’t lay down and give up. I had to continue forward. But, when people told me, “Oh Heather, you’re so strong. I couldn’t do what you’re doing.” – I wanted to knock their block off!
It’s recovering from freaking brain surgery people! You do what you have to do in order to not die. You would have done the same damn “thing”.
PS: Don’t forget to check out my Teespring storefront!
I mean, it really does. But, so does menopause, brain tumors, anxiety, hypothyroidism, loneliness, and a host of other things. I feel like when I have days like this (read: days that suck) I need to blame something: (see my list of things above). I don’t know why.
I guess because I hope I’m not just lazy. I hope that as these bad days come more often I will be able to not let them suck the life out of me and get me down even more.
Today, for example: I didn’t go to church. I went on an “adventure” yesterday (my words) and I think I overdid it. I just couldn’t clear the brain fog this morning. I woke up and felt like I was in a trance. So, I slept/napped a bit more. Did some reading. Caught up on one of my favorite shows, and while it’s still mid afternoon I have 2 choices. (Actually, I probably have many more but these are my main 2.) I can take another nap, rest my brain, or get up and clean my room and catch up on my mail and laundry that’s piled up.
I hate guilt. It consumes me and eats me up inside.
I have so much guilt about burdening my mom; her being forced to pay for my daily living expenses that I cannot take care of. (In addition to gas, car insurance, etc.)
Accepting my feelings of guilt, or
rationalizing coping with them, or whatever is one of my biggest crosses to date.
But at therapy yesterday Dr. C gave me some perspective I haven’t reached on my own:
She said that guilt results from when you do something wrong.
I didn’t do anything wrong to be diagnosed with 2 brain tumors and a hereditary cancer syndrome. I didn’t cause that. I didn’t make a less-than-desirable choice and am now forced to live with the consequences. I just have a “shitty” brain (her words). And she asked me, “Would you rather have a shitty mom and a good brain?”
No. No way no how no no no. No no no nope no.
I will take all the crappy things in the world because I have the best mom ever.
I got the better end of the deal then. ❤
…but right at diagnosis (after the brain surgeries) I had 2 huge fears. Fears that kept me up night: that I would have to have the shunt and have to file bankruptcy.
Thankfully, I have avoided the shunt so far.
I met with an attorney today to discuss my bankruptcy options.
I feel: sad, depressed, scared, alone, anxious, and a ton of other emotions that I haven’t yet identified.
No one can tell me what to do.
But, what do I do?
It’s time for a change-up. I get tired (honest!) of writing about doctor appointments, brain scans, etc. So I decided it’s time to share a funny with you.
For the past several weeks, I noticed a yellow hue on my palms. Both hands. My palms and fingers. Weird. A bit concerning. I thought of my kidneys right away! Oh, crap!
I e-mailed my doctor. I did some research about “Yellow palms” and read about beta-carotene and B vitamins.
Nothing was really coming together.
I stopped the taking the folate and stopped eating my main food staple:
Guess what had been staining my palms yellow?!
Yesterday morning I had another scan. I wish I knew how many I’ve had since diagnosis. (I bet it’s 10X more than I think.) You know, I
think hope wish that every time I go it’ll get easier. It doesn’t.
I have to ask the MRI technician every time the following questions:
- What if there’s a power outage while my scan is happening?
- What if something happens to you while it’s happening?
- What if there’s an earthquake while I’m in there?
- What if there’s a natural disaster? Or an emergency at the hospital while I’m in there?
The technician is pretty funny; he knows me by name and me him. He always talks me off a ledge, which I appreciate. Plus, I’m usually medicated so that helps 150%, too.
I practiced my visualization: I am at Disneyland. I am at the front entrance getting my ticket when the scan begins, then I start to make my way through the entire park. (It’s a neat little tip that works for me!)
Just like when I see the oncologist for my breast exam and think, “Is this the day she’ll find a lump?”, I found myself thinking yesterday, “Is this the day there will be growth on either tumor?”
We shall see.
I hope you all had a safe, fun, night last night!
We seemed to have less trick-or-treaters, did anyone else notice that too?
Flavored Tootsie Rolls for the win! #amirite?
Remember the whole “neurologist fiasco” from a few weeks ago?
This morning, I have an appointment with a new one.
I’m cautiously optimistic. Well, not even optimistic. Just cautious.
I just want/need another pair of eyes to see my brain, that’s all. Someone, somewhere, should give a rip that I have 2 rare brain tumors in my cerebellum.
Happy First of November to you too. I want to go to Target today!
Sometimes, I wonder how many people have been forced to file for bankruptcy once being diagnosed with a life-changing disease? While I know it’s not healthy to be so focused on my dire financial situation, it’s really hard not to be. It’s really difficult to not be depressed about my current state of affairs. And, I see no end in sight. My brain is now damaged. I have a brain disease. I’m desperate. I don’t know what to do.
This isn’t pleasant. This isn’t fun. This is my life and I wouldn’t wish it on anyone.