I am so glad I remembered by password to my blog!
Also, thank you to Jaana for the inspo for this blog post. And away we go:
Family
Post 1001 or what I remember from my black-out
You know, never in a million zillion years did I ever think I’d have brain tumors, let alone blacking out, hitting my head, and taking a ride in an ambulance! Yet here we are.
This incident was just a few days ago but it seems like yesterday. (A little back story: I have something wrong with my left thumb joint. For the last few months I have been feeling a lot of pain, and I mean a LOT of pain, and a “double-jointedness” on the joint right below my thumbnail. In other words, arthritis. – SIDE NOTE: I am reminded of a story of one of my little nephews. When he was a kid he called his Big Toe his “Thumb Toe”. Isn’t that the sweetest? ❤
Anyway, back to my story: It was around 4 am and I woke up to use the restroom and I always take my thyroid pill around this time. I remember opening the lid with my left hand and I got a shooting pain (I used the word excruciating) in my thumb and the next thing I remember I’m laying flat on my back on my bedroom floor. And I didn’t crumple like a little flower mind you; I hit the floor like a lead brick. I remember somehow getting to my bed and thinking to myself, “I should yell for Mom to come help me.”
The next thing I remember I am in the restroom trying to finish my business and I remember toilet tissue in my hand. Then, I am again crumpled on the floor, the back of my head is killing me, and my Mom is in my face screaming, “Heather! Are you OK? Heather! What happened?”
She said I stood in her bedroom doorway and told her, “Mom, I need your help” and I crumpled onto the floor and she heard the thud of my head against the wall. I’m not going to lie, I’m getting a good amount of anxiety as I am writing this. I want to share this with you and also to document my life today. When I am gone I want others to know how hard I tried, especially my nephews. I want to them to know how much I love them with a love that fills a thousand oceans to infinity. How they give me more joy and the strength to carry on. How hard I tried to be positive and never give up. How hard I tried not to be bitter about my lot in life.
If I wanna get some sleep tonight …
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.
Guilt sux
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. ❤
Brain balance
I had a brain scan this week, and saw the neurosurgeon on Friday for the review. I was up super late last night going through the report with a fine-toothed comb.
Just participated in a #BTSM (brain tumor social media) tweetchat.
I had a terrible dizzy episode this morning right after I woke up.
At church last week I had a horrible experience in teaching my Relief Society lesson. The connection between my brain and my mouth was lost. I couldn’t get the words out. I lost it in front of the sisters. I cried.
I also had a good dinner with a friend Friday night.
I bought some new shoes and a new workout top, too.
I have done a lot of sudoku puzzles these last couple of months.
Went to a zoo with my family.
Usually, my brain stuff keeps me up at night, but what I continue to learn each day is that I have to balance my life and my health. I don’t do it well, and I don’t do it often. I just get to keep practicing.
Sleep > Writing a blog post at almost midnight
What in the world am I doing up this late?
Oh, yeah. My anxiety is flaring. Big time.
But I had a good day today. It started out well. I guess.
During the 2nd hour of church I worked on some Family History. I have such a strong calling to search after my ancestors, and there is one line in my family where I am completely stuck. At a wall. Either this man saw a murder or he committed a murder and changed his last name in the process. Pretty crazy stuff. But I am committed to figure out, somehow, what happened and to find the rest of my ancestors.
I taught the Relief Society lesson today also. It went very well. The Spirit was so strong, and the sisters were responsive and it was just a great discussion. I am so lucky.
But. Here comes the gnarly part: I can’t deny that my brain is changing. And I don’t know what to do with this. My brain is changing and other things are changing too and it’s scaring the crap out of me. I am so saddled with grief that my only option is to take more medication to help manage my symptoms. Who knows how these symptoms will progress is another thing that scares the holy crap out of me, too.
I guess I should be glad I had a good 3 years – and now I feel it’s all going downhill from here. I’m so scared. What do I do about my brain changing and my body changing? This dizzy crap that makes me feel like I’m going to fall over? And then what if I can’t drive anymore? It’s weird that these symptoms seemed to have come up from no where, if that makes sense. I have so much anxiety in my heart yet as I sit here to write it all out I’m blocked. I cannot seem to get it from my head to my fingers. I don’t know how to process these emotions of what’s going on inside of me. You know, my biggest fear (when I had the first surgery) was that when I woke up I was going to be different. And, by the grace of Heavenly Father I wasn’t. Yet, the brain is such an amazing thing I think I had no idea how magnificent it really is. So, as I sit here typing, I’m wondering, “What can I do to take care of my brain better?” Well, duh. Sleep would be job #1. But what else? I know there are tons of things out there about classical music and our brains – and I do listen to classical music quite often. I should really research this and look into this more…I’m afraid that my brain, or at least my cerebellum, is tired. Wouldn’t you be, too, after a freaking 13-hour long surgery?! I need to really take good care of it.
This seems like a dream. This doesn’t seem real. Like, I don’t, or can’t, believe that I am the person who has 2 brain tumors, who had a hysterectomy, and will never be a mother, because of these 2 rare genetic conditions that I just found out about only 3 years ago. I guess looking at it that way, I’m only a toddler on this Rare Disease Road. And, toddlers need a lot of love and support. For the record, I want off the effing road, but I know that can’t happen.
So with all this being written, I am going to go to bed. Turn on my iPod and listen to the Mormon Tabernacle Choir hymns and just sleep for tonight. I know I can live in fear or I can live in faith. These 2 emotions waiver minute by minute I’ve noticed. So, when I tip over into fear, I need to do something quickly to get back in faith. That’s why I jumped on here and wrote for a few minutes so I can clear my head. And to remember the great things about today.
(Nephew #2 had me draw a name out of a plastic baggie because we are doing “Secret Santa” and it ended up that I drew my name!) 🙂 But, we fixed it after all.
Good night.
Fun Fact Friday 12/19/14
Did you watch that TLC show last weekend called The Secret Santa?
My Mom had TLC on all day Sunday, and I must admit that I got a bit hooked on a few of their Christmas shows. I love Christmas. Anytime. Anywhere. (And I especially loved the shows that featured people decorating their homes in 245,992 lights.) 🙂
(Thankfully) My nephews were near the TV when The Secret Santa came on, and after a few minutes they were hooked. (Almost as magical as this show.) They were mesmerized. Quiet. Sitting on the floor with their head in their hands, drinking in every word that came out of the TV. (My nephews are in 4th and 2nd grade, so they are right on the cusp of still believing in Santa.)
During the show I asked them what they thought of it. Nephew #2 said, “It makes you believe in Santa more.”
Me too.
The Good List
So, we all think about bad things going on in our life. Right? It’s hard not to think about struggles, fears, unknowns. All of that.
Part of the reason I have this blog is to get it all out…no filter here.
But last week when I read this post, I was moved. Right before reading it I had a huge post prepared about all my woes. 😦
I decided to make today’s post different:
The Good List
- Going to Yoga class
- Going to Zumba class
- My car – that it runs well
- My nephews who make my heart sing every day. When I hear them call me “Auntie”, I know I can do anything!
- My cats Tiggerwigger and Konacoffee, who love me unconditionally
- The Gospel of Jesus Christ
- Books
- Temples
- Fuzzy socks
- My beanie baby “Max”, who I got years ago after my brother rescued a dog that he named Max. I loved this dog more than anything!
- My favorite movies: “The Holiday”, “Santa Clause 3”
- My recovery from 2 brain surgeries
- My mother who helps me in many, many, ways
This list isn’t all-inclusive. It’s a work in progress for sure!
Dear Readers – what’s on your Good List?
The Change
I thought about some funny titles for this post, “The Change of Life” or some such things. Today being Mother’s Day and all.
I was pondering last night how this is my First Mother’s Day with the PERMANENT AND NOT EVER CHANGING FACT that I will never be a mother. Now, you can add the terms “biological”, “or there are other ways to be a mother” and of course I TOTALLY GET THAT. But, this post (and my blog) isn’t to be rational, er, kinda. 🙂
It’s to write and be honest and raw. To be who I am whole-heartedly. To own that. To embrace me and all that I am.
I’m never going to be a mother. I’m never going to have the miracle of life growing inside me. I will never able to look at another human being and know that I created that with a husband. Gone. Done. Not happening. Off the table. 5 months ago today I made the decision to have a hysterectomy. I have had huge things on my mind since the Lhermitte-duclos Disease and Cowden’s Syndrome diagnosis (colonoscopies, breast cancer, etc.) but “uterine cancer risk” was like a small gnat buzzing around my head. I couldn’t shake it! I knew I had to decide soon…but, I still hung on. It still took me a LONG time (most of 2012) to finally say with all assurance and the strength I could muster, “NOT GETTING UTERINE CANCER TRUMPS NOT HAVING CHILDREN.” Saying it, I get it. But feeling it? It’s a different story.
I’m sad. But, relieved? My soul hurts; but I’m feeling empowered knowing that I took a stand against Cowden’s Syndrome, at least for a small part, and faced the cancer risk
straight on and said, “Keep on moving. You’re not staying here.”
PS: Hot flashes are the devil on earth and I pray for relief from them. One day. Sigh.
I need this!
PPS: Happy Mother’s Day Mom!
Running in the park
I need more days like today.
Went to see Rio 2 with mom and my nephews. Ate sushi and watched my nephews run around the park. Remember when you could just run, run, run, and run without a care in the world? I am so glad I got to experience today with my family.
I tweeted this morning that I was looking forward to a NON Rare Disease day. Between the struggles of life that Cowden’s Syndrome and Lhermitte-duclos Disease bring me, I am thankful for any opportunity to lay it down.
Now, I must get ready to tutor and get to a get to bed early because I am subbing tomorrow morning. It’s a nice change of pace to have some semblance of normalcy, and I know that I have to work on my thoughts of expecting good things to happen in my life, instead of waiting for the other shoe to drop. It’s been almost 3 years since I heard the phrases Cowden’s Syndrome and Lhermitte-duclos Disease, I know that.
But, even after 3 years I don’t ever forget that I have 2 brain tumors, and that my life has completely done a 180. I must start expecting good things in my life, and not fear the bad. I know where this all stems from…the 5 cm. brain tumor completely rocked me to my core. How much longer will it take me to acclimate to it? Or is this the best it will be for me? Who knows. I just know that I am better than I was 3 years ago. That’s a great thing. That is progress.
As I have written before, there’s no book titled Cowden’s Syndrome for Dummies. So, I didn’t get to read up about it after diagnosis. The neurosurgeon didn’t give me “LDD 101” after surgery. I guess for all intent and purpose, I’m not doing too bad. This is my life, without any instructions, and I’m plugging along as best I can.
PS: As I was editing this post, I had the thought, “Um. I wonder if there IS a book called “Cowden’s Syndrome for Dummies”? If not, I SHOULD WRITE ONE!” 🙂
hopeforheather 