I just hit the 11 year anniversary of getting diagnosed with Lhermitte-duclos Disease, which then led to the diagnosis of Cowden Syndrome. How can that even be? It came and went, July 18. I was aware though. I can’t imagine there will ever be a time in my life where I am *not aware of the month of July. Day after tomorrow is the anniversary of getting my head cut open for the first time, July 27. I’m stunned. Just stunned. That is some heavy information, you know. Thank you for being here with me. If you’ve been with me from the start or found the blog after, I am so glad you’re here! It means so very much.
What planet do we live on?!
I was just told that my hospital is refusing to grant any medical exemption for the needle to ANY patient. Period. This is not OK! If you are living with 2 rare brain tumors that have been stable for 10 years and have no qualms about being forced to take it, please contact me. Otherwise, if you feel that this rule from the hospital is OK, please unfollow me now. We will not ever agree to disagree over this.
My “doctors”, and I use that term loosely, work for ME. They are supposed to advocate for ME. What the hell am I paying so much money for if this is the treatment I receive from them? This is utter BS. I have a voice and my voice matters. I WILL NOT BE SILENCED OR BULLIED. I have called the grievance line for the hospital and you can sure as hell bet I am not going to take this lying down.
This morning I had my first EMDR therapy session and I’ll be damned if I didn’t go straight to the few moments before the first craniotomy. It was so very much. 🤧
More to come
It’s so hard for me to believe that 10 years ago I began this blog. Just shaking my head at where the time has gone. Wow. I am so thankful I have kept at it this entire decade because I have so much healing and growth to be thankful for! Oops, ended that in a preposition but haha, it’s my blog I can do what I want. 🙂 What do you think I will be writing about in another 10 years?! Unbelievable!
We all know this blog began as a place to update on my brain tumor diagnosis and subsequent journey to follow. But, for my family (in the future) I want to share with them that I am more than my brain tumors. I hope they know that now, but regardless, I want them to look back on this blog (on my small place on the internet) and see me.
Some of you may know, I am a member of the Church of Jesus Christ of Latter-day Saints. I come from generations of pioneer stock, but as I read somewhere recently, aren’t we all pioneers just in our own way? I carry the burden greatly of not being a mother in this life and the generation line breaks with me. That knowledge kills me slowly sometimes, and it was very painful and poignant this morning during Sacrament. I was sitting behind a high-school friend of mine, and I could see her sitting next to her husband and a few of her children. One of her sons was sitting next to her and he laid his head on her shoulder. Somedays, I am really strong and little things like that don’t bother me, but for some reason this Sunday I was feeling more vulnerable. (NOTE: I have been struggling with quite a bit of anxiety lately; I discontinued my anti-depressant – with doctor direction – in May; I have been feeling a lot of fear about v8x – which I may post about in the future) and with dealing with those emotions plus it being a Sunday during Sacrament I am kind a floopy mess right now. 😉 So, here I come to the blog to get all this junk out!
Back to the topic at hand: I want to share something that I did this morning with my junior companion in Ministering. (For those who may or may not be aware, Ministering is the new term for Visiting Teaching.) Life is in session and between trying to schedule a visit between myself, the sister, and my junior comp., I couldn’t get anything scheduled. So, I grabbed some blank notecards this morning and took them to church. My junior comp. and I wrote a quick note to the two sisters I am assigned to minister. I am hoping this gesture will make them feel better, because I think it sure helped me to feel better.
I guess to summarize, I think any small gesture really can go a long way. For all parties involved. I am very thankful.
Weep around the clock
I’m not sure what’s going on with me. I can’t stop crying. Literally. At a moment’s notice.
I want to be strong. I want to be smart. I want to be realistic.
- Sunday was the 10 year anniversary of my brain tumor diagnosis.
- Both of my cats are 17 years old and are in very rapid decline. Almost simultaneously.
- Next week is the 10 year mark of the first brain surgery.
- I am turning 50 years old next year.
- I stopped the anti-depressant this past May, with doctor support and direction.
- I am in the process of going back to college and am having difficulty with a certain department on campus. Also, I was denied financial aid and am in the process of trying to petition to have it reinstated.
This is a very, very short list.
I am so acutely aware of my own mortality and everything around me.
I don’t want to go back on an anti-depressant. I want to feel my feelings yet be very mindful of my limitations.
I am scared the weeping won’t ever stop.
Fraud. Also TL, DR
I am worthless.
I feel so utterly worthless. These damn brain tumors have already taken so much from me! And they continue to chip away at any self-confidence I have left, which is very minimal to say the least.
I wanted to attend a Thyroid Cancer Conference this weekend. Wanted being the operative word. It’s 5:15 PM and I just remembered about it now. It’s over. I missed Friday’s, and missed all of today’s. I was in the works of being a moderator for an online support group for people with Thyroid Cancer. How can I do that when I can’t even remember a stupid thing like a virtual conference?!
I am a fraud. A big, freaking, fraud. Eff you Cowden Syndrome. And a BIG eff YOU to Lhermitte-duclos Disease too. You both robbed me of my heart’s desire and you continue, even 9 years later, to make me miserable.
I have mentioned that feeling many times over the last 9 years. I feel like a fraud: I may act like I have my crap together. But, I don’t. Not at all. I try to be positive. No one like a Debbie Downer. I try to act brave. But, I am not brave at all. I am terrified of dying alone. I am terrified of what my life will look like as my medical status moves forward.
I know it was only virtual. I know that there are more important things to worry about. But, as I continue to forget things, it just exacerbates my fear of what my life will be like one day.
What do you do to try to not beat yourself up about things?
the fork in the road
I created this blog 9 years ago to document my life living with 2 brain tumors. Yet, as I sit here this evening I cannot bring myself to write about anything. I’ve never had a filter here, and I am not purposely holding anything back. It’s just that I cannot connect anything in my brain to share. Sadly, things are very active with my Cowden Syndrome and Lhermitte-duclos Disease. I had a visit with the ENT last week to talk about my tinnitus. I could write about that at some point, I suppose.
So, what should I do? Retire the blog? Move entirely to Twitter since short blog posts are more my style (at least I prefer to read short blog posts). Is anyone still here? Would love to hear if anyone’s still here with me. This whole “Content Creator” trend definitely isn’t how this blog began. Unsure if I can make the transition.
May 4, 2020
Day 4 of Brain Tumor Awareness month and today I decided to share a little bit of data (that I could find) about the type of brain tumor I have: Gangliocytoma. My understanding is that this is a very rare, but benign, brain tumor that makes up about 1% of all brain tumors.
Sadly, a few of the “main” brain tumor org’s I have found do not carry much, if any, data about Gangliocytoma. Yes, they are rare. Yes, they are benign. But, it is still a type of brain tumor and the data that *is there should be included. I think that is one of my biggest frustrations since diagnosis: inclusion of *all types of brain tumors.
Anyway. Below is one of the (few) links I have found in my research. I pray that more data will be collected!
May 3, 2020 a bit graphic
Day 3 of Brain Tumor Awareness month and I chose to share a picture from my v long recovery.