I probably shouldn’t ask questions of my Mom about the brain tumors.
I’m all worked up now; I don’t think the Trazodone will work tonight, dammit.
We were just talking about wisdom teeth and how I’m the only person I know who didn’t get ANY! 😝
(My Mom got 1 and she doesn’t remember about my Dad) and I said jokingly, “Maybe mine were in part of the brain tumor Dr. K got out”…..
Then it went off the rails (for me) right after this. Dr. K told my Mom in 2011 the smaller, encapsulated tumor is circular in shape.
And the 2nd tumor, the big one that is kicking my ass, AND WAS THE REASON I HAD TWO BRAIN SURGERIES 1 WEEK APART – has “fingers”. No border, I guess, right? 😳🤕
And those damn fingers are going to grow and get deeper in my cerebellum. And continue to wreak havoc in my daily life.
I know we ALL struggle and have trials/tribulations – but how am I ever supposed to triumph over this? Can I? Will I? How?! I had such hopes and dreams for my life and future. 💔
This freaking sucks; it sucks balls that I have to deal with this all by myself, I’m just saying. I’m almost 50 years old and I wish I could catch a break.
I hope(d) and pray(ed) that the Lord would bless me with a partner/companion/trusted friend who’d want to help me carry this load. Guess I’m crap out of luck. I’m tired. I’m tired of all this brain stuff. I’m tired of being alone – what friends I had – are gone. Do brain tumors scare people that much? Then IMAGINE what it’s like living with 2 of them? 😐
I hate you Gangliocytoma.
Where or where to begin?
I’m up early – couldn’t sleep – and decided to jump on the ‘ole blog because life is coming full force and at times, I can’t breathe. Writing, sometimes, helps me breathe.
Here’s a quick recap on the last few months:
- In January, I lost my rescue dog. I loved him for the past 8 months and he forever changed my life. I was utterly gutted at his loss, but it was time. He was ready although I never was, nor ever will be.
- Finally got the referral to a neurologist (that was desperately needed!) and was told I have (the beginnings of?) nerve damage in my feet. From the brain tumors? The brain surgeries? Huh? What else now?! I had a nerve test last month and it was hell. The dot and the period.
- Do you remember the thyroid issues I have dealt with since last October? Last month also, I had another fine needle biopsy on my (empty) thyroid bed. (So, let’s see that’s – ultrasound/MRI/fine needle biopsy X2) – and there is STILL NO ANSWER AS TO WTF IS GOING ON IN MY NECK! I
had have elevated thyroglobulin and my doctor thinks maybe it was a technician error? Yet something is growing (I guess?) in my neck but it’s not a lymph node or thyroid benign or malignant cells? Ugh, I’m beyond exhausted.
- Haven’t filed BK yet. Found out there was some paperwork I need to submit to one of my creditors.
- My anxiety is getting pretty riled up and I am struggling with even the simplest of daily life tasks.
- I deleted my twitter account. I don’t know why; just felt like the right thing to do. Maybe I’ll be back one day? There are so many wonderful things about twitter, and to be honest it just doesn’t feel right watching Days or Gutfeld w/o tweeting!
- I have this great urge to purge (LOL). Probably the shame and anxiety about the BK.
So, what else folks? Do I continue this morning to wallow in shame or do I put on my big girl pants and get crap done today? I’m sure you know what I want to do. Let’s see if I fight against my norm and do it different.
I don’t sleep well at all. And apparently Cowden Syndrome doesn’t either.
Today, I saw the Dermatologist and had a mammogram. FINALLY found out the thyroid/neck MRI was submitted and approved: it’s scheduled for 10/26/18. By the by…can a new lymph node grow when I don’t recall my “other” lymph nodes were even involved in ’03 with the thyroidectomy? Hmm.
Still hard to believe it was 7 years ago this month I was waiting for the genetic testing results to confirm I have a PTEN mutation.
Life is rough. Life comes at you pretty fast. Funny, I’m STILL trying to accept that this is now my life: struggle, fear, terror, anxiety, loneliness, Financial ruin, dizziness, etc.
I know I’d be better off if I just accepted all that crap. But call me stubborn or naive. I can’t accept those things.
I wanted and hoped for so much more in my life.
Today was my oncology appointment. Gah.
I had a few months of “quiet” but that’s now over. The breast MRI, colonoscopy, and EGD are next up to bat.
I’ve come this far, but man I’ll tell ya…it’s so much. I’ve always battled generalized anxiety, but when things come at me fast like this, my anxiety is running full speed at 150%.
Praying for sleep tonight.
I didn’t want to do much ranting or complaining as of late. Because news. Yet, I have this blog and continue to share because I hope I can educate ONE PERSON about Cowden Syndrome who might have never heard of it before me. (Like the technician who did my mammo who’d worked in healthcare 20+ years who’d never heard of a PTEN mutation.)
One of the signs or symptoms of CS is a large head, macrocephaly. (NOTE: I can’t tell you how many times Post-diagnosis I’ve asked my Mom, “No one said I had a big head? No one made mention? Anyone? Nothing?”)
I can connect the dots in my past NOW, of course, never finding a hat that fit right, etc etc. Never thinking it was a sign of THIS!
Moving on: I have to now use a sleep mask. I’m not mad about it, I really actually love it now. However, what I AM kinda made about is this Disney sleep mask doesn’t fit! I’ve tried it a few nights already and my temples/forehead pulse and I can’t sleep. This wasn’t a KID sleep mask! It was marketed/packaged as ADULT, meaning one size should fit ALL.
I realized this week – I don’t want to have a brain scan right now. I had one in December. I don’t want another one next month.
Also, I have pondered about a lot of things lately:
- Why are the MRI’s so frequent? (About every 6 months)
- Are they this frequent to help ease my anxiety?
- Does the doctor want them this often?
- There hasn’t been “significant” growth since 2011. What does that mean?
- Does the neurosurgeon want to scan me so often because we just don’t know crap about gangliocytoma?
- Why don’t I want to have this next scan?
- Will there be (of course not) any significant change if I push the scan off 6 months?
- Should I appeal the disability denial?
- Should I refile?
- Should I file bankruptcy?
- Why can’t I catch a break?
When can I get some sleeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep?
Does anyone else suffer from sleep anxiety? I don’t know if it’s from the brain tumors,
hysterectomy menopause, anxiety about my dire finances, depression, being overweight…or if it’s a hot mess from all that and more.
I exercise. I try to meditate (but let’s face it) I have no idea how to do it or what I’m even doing. I try to eat a salad a day, but I know I struggle to get enough protein because I don’t know what to eat (I don’t eat red meat anymore).
I have some medications and some natural things I take each night. But, I usually feel horribly drunk still, the next morning.
Do you have any tips you can offer to for my nighttime routine? Do you do anything specific to help you sleep?
I know it’s good to be busy. But I have been so busy these last few weeks that I feel like I am forgetting something. That is the oddest feeling. I haven’t had any medical appointments for a while and instead of relishing the quiet, I feel anxious. I feel like I am missing something and that makes me uneasy. This sucks. My life shouldn’t be this way. Cowden Syndrome and Lhermitte-duclos Disease are here to stay, and in fact, have been with me since Day 1. Yet since my diagnosis I feel this intense amount of pressure. Mental, emotional, call it what you will. I feel so much weight on my shoulders to manage everything, because it’s my life we are talking about here. If I forget to do something, who knows what it could lead to?
I know stress doesn’t help anything. I try to relax, I try to get good sleep. I volunteer to pay it forward. I just hate this feeling that if I “don’t do it right”, I will get sick again. You know, I think that’s it. I think I just had a mini-breakthrough. All this pressure I feel, that I am putting on myself, managing these Rare Diseases that must be done “right”, is giving me a false sense of security? That if I control everything (which I know I cannot) I can keep myself from getting sick again. I don’t know if that makes sense or not. The brain surgeries were just so terrible and the recovery was so painful, I’m terrified that I will have to experience that again.
This is where I must Let Go and Let God. I am trying. I don’t do it well, and I don’t do it perfectly. But, each day I try.
It sure would be nice if this brain tumor and rare disease stuff could be only for a season in my life. But, I know that isn’t the case and the sooner that sinks in, the better off I will be. Time. URG. It’s always time, isn’t it?
I spent most of today sleeping. That concerns me greatly because I’m not sure if it is because I am depressed or because of brain fatigue. I go and go a lot during the week (especially when I am able to work), so when the weekend rolls around I usually need to decompress and recharge my batteries. I don’t know how to tell the difference or if I need to be concerned.
Such is this life of mine now.