1 Week Out From Brain Surgery

My Meningioma will be removed in exactly 1 week from today. I have many feelings about this. "I don't wanna" is probably the most dominant thought right now. "You can just run away" is the second thought I have. Though neither are really feelings. The feeling behind both of those is fear. Though I can't really pinpoint what I'm afraid of? I have faith in my neurosurgeon and know how routine this is for him. I have great heath care and lot of support. Logically I even think I'll recover pretty fast. I think maybe the fear is coming from pain. Far more than death I fear pain and suffering. It's going to hurt and I'm going to suffer. There's no avoiding that fact. And that's at the heart of what makes me want to run away and go to Disneyland.

My husband and I at Disneyland last November. 
We totally drank the Koolaide

All this week I've been watching YouTube "ride throughs" of Disney rides. I found it ridiculously comforting. This was my favorite one that I found. It's the Pirates of the Caribbean Ride in Shanghai. I didn't feel bad watching it because I know I'll never go there in person, so it wasn't a spoiler.

I think there's many reasons Disney has been on my mind this week. It was a wonderful vacation we had there last November. We hadn't been in years and years and doing it without your kids is a completely different experience. We had a blast. So happy memories like that absolutely combat stress. That's one reason. Another I'm sure is escapism. Watching Disney transported me to another place that had nothing to do with work, family, brain tumors, mobility issues. You just sit and watch and let everything real slip away. That had a lot of appeal this week.

The only pain and suffering in Disney is inflicted by super cool villains with bitchen castles, swag and backup.

So I guess you could say my attitude about my brain tumor this week has been one of avoidance and indulgence. And I'm more than ok with that. During these super challenging life events I'm a fan of "whatever works." Whatever keeps me going through the day so I'm not crying is a win. Whatever gets me up in the morning to face another to-do list is victory. Whatever stops me from getting in my car and just driving away is an accomplishment. Whatever it takes. I can get through this. "I can go the distance." Hahah! I couldn't resist.

(that's a line from Disney's Hercules in case you're a Disney nube.)

What to Bring to The Hospital

In case you haven't picked up on this... I'm a HUGE planner. I like having a plan, I like knowing the plan, I like making a plan. It helps me to feel more in control. The less I actually have control of a situation, the more important it is for me to have a plan. Ergo, having a plan for when my brain tumor is removed is enormously important to me. 

Although I'll only be in the hospital for a night or two, what to bring for that time required some deep thought (and heavy shopping.) I found this heavy canvass bag on clearance yesterday. The color is bright, so it will be hard to forget and leave somewhere. It's also machine washable, which we'll want to do to anything that was at the hospital. The straps are thick and it's easy to carry. Well, easy for my husband to carry. It also zips shut, which is super important for the hospital.

Inside my bag are some essentials. Rubber bottom super soft slippers, body lotion (that I bought at Disneyland, so it reminds me of that fun trip we took), face wipes, baby wipes (in case I can't take an actual shower), deodorant, lip balm, sore throat drops (being intubated always leaves you with a very sore throat) and mints. I also scored some slip on shoes for under $3. Easy on and easy out the door. I'll wear them to the hospital.

Not in the picture is a super soft white blanket that I treated myself to. The blankets at the hospital are very utilitarian. It's hard for me to sleep without my "blankie" so I cleverly bought one we can bleach and wash when we get back home. Last thing I want is hospital cooties!

This is my favorite "room mister" that I spray on my pillows at night. I'm tempted to bring it to the hospital with me, but common sense dictates I'll be drugged out of my mind (literally!) and couldn't care less about such things. As important as knowing what to bring is knowing what to leave. I'll hold off on the spray and save it for when I'm back home.

We Have a Plan

I saw the neurosurgeon on Wednesday to talk about "Minnie." Turns out Minnie is more of a "Max." She's a big girl. You can see her here on the bottom right of the screen (though that's the left side of my brain.) 

Left Temporal Lobe Meningioma

Turns out because of her size surgery is really the only option. And it's happening fast. Like in two weeks fast. I'm not one to wait and to be honest I'm fine with this plan. Because we FINALLY have a plan! It was also super helpful for me to see the picture of it. Even if it was MUCH bigger than we were initially told (and from what I expected.) 

 

My initial feeling was "WOW! That sucker is huge!" But it gave way to a feeling of relief. We now know what it is and what can be done about it. All I have to do is "show up." My mom has a favorite quote that she came up with. "So much of life is just about showing up." I think she's completely right.

The waiting is close to over and we have an action plan. TO ACTION!

Everyone has been very supportive... and understandably shocked. It's not a very common thing to get a brain tumor. Add to that the fact that I also had latent TB just 3 years ago and I really need to start buying Lottery tickets because I'm that big of an exception. My picture should be on Wiki when you look up "outlier."

My nephew sent me the most adorable picture. He knows I love sharks. The red is "all the blood from what it ate." Awwwww! 

Yesterday I sent everyone an e-mail with specific ideas of how they can help us. You know when there's a crisis like this you want to help, you offer to help, but you don't really know specifically what to do and then the person has to go back and ask. It's just awkward all around. I thought if they all had some specific things to choose from it might make it easier for everyone. Times like these are when I'll take all the help I can get. Which is funny because my husband's more of the opposite. He tends to shore up and want to do it all himself. At least until I want to make him watch Frozen again. Then I'm sure he's happy to delegate.

In the meantime I'm trying to be kind and gentle with myself and resting when I can. I'm still very tired a lot and that's ok. I'm dealing with a brain tumor after all.

The big down side to all of this is my surgeon doesn't think the tumor is the cause of my muscle weakness. But we'll see. I know the brain and body are complex and you never know. Also without the muscle weakness I don't think they would have found the tumor till much later. And who knows where that could have ended up. Maybe the muscle fatigue was my body's way of making the tumor known? God works in mysterious ways. I'm just glad it was discovered and can be treated.

"Minnie" The Meningioma

I haven't posted in a while. I've been struggling to keep working as best as I can, sharing the news of the brain tumor with family and friends, juggling doctor messages and phone calls, laundry, being supportive of my son (who quit his job of 5 years the day I found out I had a brain tumor), enjoying life and distracting myself, processing my feelings and sleeping as much as humanly possible.

-GASP-

Yes, that tightness in your chest as you read that list is exactly what life has been like these past few days. But there are bright sides a-plenty!

1) The neurologists have decided I have a single tumor. I've decided to name her "Minnie." She's under 3cm big and is in my Left Temporal Lobe.

That's the green area.

2) Family has been super understanding (and of course shocked.) We're having a massive outpouring of support and specific offers of help. That has been amazing and made me feel very loved and much less worried.

3) I live in a big town with excellent health care. From the time of diagnosis to the time I'll meet with my neurosurgeon to go over a treatment plan will be less than 2 weeks. 

4) The neurosurgeon I'm seeing specialized in non-invasive surgery on that specific part of the brain.

5) My husband and son have been taking great care of me. 

6) I have the ultimate excuse for anything. Words that have left my mouth recently include "If you don't buy me that fluffy pillow I'll tell the checkout person that I have a brain tumor and you wouldn't spend $14.95 to make me happy." And of course the classic Arnold Schwarzenegger classic throwback quote "It IS a tumah." 

7) My mom sent me flowers AND a fun Halloween wreath. It's never too early for Halloween.

8) Even my dog feels bad for me.

 9) I get to sleep a lot and not feel bad about it.

10) I haven't had any seizures (a common symptom of brain tumors.)

Always look on the bright 

side of life!

Keeping Distracted

My wonderful employer is taking everyone to Hawaii in January. Saturday I just wanted to get out of the house and do something fun, so the hubby and I decided to go searching for snorkel equipment. We've never been snorkeling before, but are excited to give it a try. We pride ourselves in being adventurous and planning an adventure is a good way to take my mind off... well... my mind. More specifiably, my brain tumor(s) (which I have yet to name.) 

My husband is more interested in the traditional snorkel gear, while I'm more in the "float face down like a bloated corpse" camp. I've read great reviews on these full face snorkels. It was helpful to go to an actual scuba shop and try them on though. They didn't have this "Miss Piggy pink" in my size, but they're ordering me one. (insert squeal of excitement here.)

I also distracted myself by calling a friend I haven't spoken to in a very long time. I have a bad habit of online shopping while I'm on the phone. I don't always buy something, but this time I did. I found a company called "Love Your Melon" who makes these adorable hats (and blankets.) I just loved the idea of wearing this soft, cozy hat after my (potential) brain surgery. And even if I don't need surgery, I still need to love my melon.

50% of proceeds from the company go to help fight childhood cancer.

On Friday before I even knew about the brain tumor(s) I bought myself this mermaid pendant. I've had my eye on it for a month, but had to save up to get it. I thought it was a beautiful way to mark getting my first "real" wheelchair. The medical equipment company is sending a rep to my house on Thursday to measure me and help me pick out an electric chair. This necklace is the first mermaid I've seen who doesn't have long flowing hair, but who also has some sass. Just like me. I love her. 

Now that I've been diagnosed with a brain tumor(s) I'm sure my insurance company won't give it a second thought about covering my electric chair 100%. So that's a bit off my mind (get it? Hahah!) I'm looking forward to meeting the rep and hearing more about my options.

My husband has been amazing (as always) and has also been so helpful at keeping me distracted this weekend. It's been a weekend full of back rubs, hugs and extra loves and support. He didn't even flinch when I insisted I needed a $25 ZZ Plant for my office. What a guy!

We're hoping to learn more today about the tumor(s) and what's to come. But in the meantime I'm focusing on the now and keeping busy. 

NOTE: I'm not affiliated with any of these links and I didn't receive any compensation for sharing their information in any way. 

Brain Tumors Suck

WE HAVE AN ANSWER!

We know what it is. 

I have a brain tumor(s). 

Friday night my neurologist called saying my brain MRI that I had done that morning showed "A mass in the left temporal lobe region and 2 artifacts." She is consulting with other professionals and referring me to a neurosurgeon. I'll know more tomorrow about what else is going on.

The main tumor she thinks is a Meningioma. Slow growing and unlikely to be cancer, but causing my muscle weakness/muscle fatigue and other problems.

The 2 artifacts are complicated. There is "something" on my "optic chiasma." That's where the bundle of nerves in charge of your vision meet together in your brain from both eyes. The other issue is my cortex. The whole thing. Could be "nothing," could be "an infection" or could be "something else." 

I'm so relieved this is a holiday weekend and I have extra time to digest this information. I'm also relived that I FINALLY have an answer to my mystery muscle weakness and fatigue. It also now makes sense that the right side of my body was more compromised since the main tumor is on the left side of my brain. WOW! Go science.

Of course it's not all rainbows and unicorns. I'm also sitting with all the feelings that come with learning you have a brain tumor. And there's a lot. And they change a lot. 

I'll know more tomorrow. Till then I'm trying to cope. Emphasis on "try."