Optimism

Charles said the surgeon was SO optimistic after the surgery, but wonders if he is that way with everyone so the person will recover better in the first 2 weeks after surgery without worrying too much about pathology. He does have excellent bedside manner. I'm trying not to let my worry get the best of me. I don't know why I feel this way, but I'm thinking it's grade 3. I had this same bad feeling before the diagnosis mri, so I don't like to dismiss it. I hope I'm wrong! Come on, universe, prove me wrong! We could use something going our way for once. It's been a tough year!

So much to say

I didn't realize just how much I had to say until I started this blog! I'm sure you're all getting sick of hearing from me! Well too bad! This is mine and I get to do what I want. I'm just happy I can make capital letters and symbols again, and type with minimal going back to edit my letters getting switched up.

I'm continually amazed by our support army. People have been here to play with the kids, bring us meals, and help with household chores, drop off cards and gift cards. It's really truly amazing. Charles and I have no way to really express how grateful we are. Simple "thank you" doesn't seem enough anymore.

The kids are hanging in there. Ellie is super frustrated that I won't carry her around. I hope I get that lifting restricted lifted soon. I miss picking her up. My arms are weak from the keppra and I can feel my muscles getting weaker. More resting will only make it worse. Liam has pretty much had enough of all the company. He asked me to get off the couch yesterday when i tried to sit with him. He needs his space. Of course, the girls are loving it! They love having people to play with and watch them. E is hamming it up and she is fully aware of the effect she has on people.

On a night like this

{hit play on the playlist on the bottom right of the page to hear the song that titles this post}

C and I have plans to talk tonight. We have our list of questions ready for tomorrow and have to talk about what the plan might be and how we'd deal with it. It could be anything from "the surgery was enough" to "you need chemo and radiation." We won't know until they tell us the definitive diagnosis. Even after that, the follow-up treatment is going to be partially up to us. We could decide to be aggressive to REALLY get this thing gone, or we could be conservative and observe. That might be our hardest decision. Do we be conservative and wait for it to probably grow back? Or be aggressive, possibly sacrifice quality of life now with no guarantees that it won't grow back anyway? The type and stage will probably dictate where we go next and I will not be googling the diagnosis. Dr Google is not my friend. We'll have to learn as much as we can from them at the time which is why we are trying to be prepared with as many questions as we can have. I'm sure they'll answer more as we come up with them, but better to have as many as possible ahead of time.

I am planning to take some soda in the car (for an upset stomach on the long ride) and pain killers ahead of time for getting the staples out. I know it won't be pleasant, but my scalp feels tight so it's time. I'm going to have a hard time not itching it once the staples are out. I already itch it a lot but the presence of the staples keeps me from doing any real damage.

So many fighters and survivors!

I didn't know just how many people I know or are only a couple degrees separated from me that have or have had a brain tumor! I can imagine why I didn't know until now. I'm not sure I'll really tell people about this once it's all over. But seriously? 2 direct friends of mine and so many "my parent", "my friend", "my sibling"s. I have heard SO many stories of people who are fighting or have fought a brain tumor. The positive stories are amazing and give me so much hope. And we all appreciate the negative stories being kept to themselves. I'm so surprised at just how many people there are. It seems like something that would be, should be, so rare but it really isn't.

It's sad that I'm now a part of this group, but eventually, I plan to "pay it forward" by doing charity runs and donating to others in need. And I *will* be one of the "my friend" "my sibling" "my parent" stories who had one and survived!

I'm still wondering what the Monday appointment will tell us about the course of this. I hope I don't have to fight as fiercely as some of the people I've heard about. I know that's not in my control right now, so I'm trying to let it go for now.

You knew this post was coming

"Not the way you planned it. You didn't mean to happen. It could have been anyone. So stop doing what you started, say goodbye and dearly parted. Come clean when the lines get blurry. Come clean when the dawn gets dirty. Holding your breath when you just want to scream. At some point we all have to, come clean."

Life every day like you have a brain tumor. Come on, you knew this post was coming. One day you're living your life, the best way you know how and the next day, you know you have a brain tumor. Learn from me, don't wait until it happens to cherish your life. Once we knew, it felt like it was too late to get out of everyday what we should have been doing sooner, which is everything. I didn't realize how few pictures I was in until I went looking to print some for the kids for when i was in the hospital. Don't be embarrassed to be IN your family photos. You may not have time to loose that extra little weight or make your skin clearer. Your loved ones want to remember YOU just the way you are. Let them!

As I sit here and think about how our lives could be totally different after the Monday appointment, probably already are totally different, I realize how much we all take things for granted. Don't think it won't happen to you. Something is going to kill all of us eventually. I won't let this tumor be it for me, but I will let it change how I view the world! I know I'll constantly be looking over my shoulder, waiting for the follow-up MRIs with stress, wondering if we have to do this again, or something else worse. Instead of choosing fear, I choose joy. I'll be joyful for every day I'm given and yes, I'll worry about the "what ifs" but you can't let that get in your way. I'm thankful for everything I have, even more than I ever have been. I don't lament the things I don't have. I love every second that I am with my kids. They are joy. Live like you have a brain tumor and you'll never regret it.

Today was a nap day

The last 2 days, I rested but I didn't actually sleep during the day. I've been sleeping well enough overnight. Today, I pushed myself and ended up napping twice. This morning, we went for a quick trip to the grocery store. And then morning nap.

This afternoon, we walked to our community gym where I did a little activity, nothing too strenuous, but my muscles are starting to get weak so I have to do something. Then afternoon nap.

Now it's not even Ellie's bedtime and my eyes are heavy already.

I have delayed reaction time to things, so sometimes people will ask me a question and I need prompting to answer. Charles blames the keppra, which might be true. It does make me spacey.

How are the kids doing?

Well, G&L are with Grandma and Grandpa for vacation bible school this week. Liam was pretty spent on Sunday with all the company. We're no entirely sure how it's going but I'm sure it's because G&G don't want us to worry.They're with their cousin too who is the same age so I'm sure they're having fun even if it's tiring them out.

Ellie is LOVING all the extra attention. She is super friendly with everyone that comes to visit and she gets our attention all to herself first thing in the morning and before bed. She is getting frustrated that I won't pick her up and carry her, but she does okay with climbing up on my lap for a cuddle or holding my hand for a walk. She misses me babywearing her and asked for the "backpack" the other day. I played a video of when we went on our wrap walk last Sunday and she liked that. She will sometimes give me a hug and a kiss when I ask for it, if she feels like it. Hey, she's 2. She's not my trained monkey, right?

She is enjoying the food that people bring us. She really tucked into the chicken enchiladas from last night. Cheese and chicken?? Yes, please!!

How do you feel? 1 week out

This is the part where I complain.

My IV sites are itching which I take to mean that they're healing. My incision is itchy too, but also kind of numb. My c-section scar was numb for about 2 years afterwards so hopefully that will be the same here too.

The swelling in my forehead has gone down, so that's a relief. My incision got bumped last night (total accident!!) which hurt like a bitch, but it's better today, go pain meds and ice packs! My sinuses still seem under big pressure and when Charles rubs or pats my back it feels like the bubbles all go up towards the top of my head, more crackling and popping. Call me Krispies!

I'm constantly assessing my senses. A change in perception is the first sign of a seizure. Charles is worried about it too, so he asks me often if I'm still "with him". I find myself saying "Still here!" a lot. Reminds me of The Croods grandma "Still alive!!" I'm thankful for no seizures so far and hope to keep it that way. I'm thinking the anti-seizure meds are really working well and we make sure I don't miss any doses or take them late.

I am impressed with myself and my typing today. For a few days, I had a real problem coordinating the shift key for punctuation and capitalization. The quote symbol especially eluded me for a while. But the brain is a wonderful thing! Getting better every day and still kicking butt at words with Friends, except for a few games with people who ALWAYS beat me anyway, even before the surgery. But I'm wondering if my new brain mass will increase my brain's functionality, wouldn't that be a cool super power to come out of this?

I still get headaches, but they feel different. I'm still hopeful this will help them go away all together. It can't be coincidence that my migraines started 6 months ago!

Follow-up appointment July 1rst

It's confirmed that my first follow-up appointment will be July 1rst at noon. They'll do staple removal, wound check, and talk about the pathology with us then. THe nurse said she just checked and path is still pending but if they get it back sooner and decide future treatment plan is needed, they'll call us to discuss it. So no news is good news here. **please don't call us this week, please don't call us this week!**

I do not regret my haircut

Even though, I'm pretty sure they stapled the wound dressing to my head because of the poofy-ness of my hairdo, I still do not regret getting it cut at all. It's been so much easier to keep clean. I am still picking out the sticky stuff  and it would be so much harder if it was longer. I am thinking the staple removal will be easier with it shorter too.

If you're curious

I'm not shy, I will show people my incision and scar. I'm assuming if you're brave enough to ask, then you're brave enough to see it. Don't pass out though, Charles has enough people to take care of.

how do you feel?

that's the question I get the most right now; how do you feel? It's a valid question. I would ask that to someone in my situation if I was on the other side.

so How do I feel? I feel like i'm under water. there's so much fluid in my head.  it's making my forehead swell a little which isn't pleasant the stretchy skin is painful but ice packs help, and I hear gushes around in my ears when I change positions. It's like being on an airplane, I have airplane ears that pop when i hold my breath through my nose. My sinuses behind my eyebrows and cheekbones are constantly popping, which is super annoying. and my incision itches. The meds make me feel drowsy and don't help my grammar, spelling, and punctuation I see all the little red squiggly lines under my words. I'm trying my best though. No needs to feel worried, Benjamin Edelmans (plural on purpose to freak you out). I fall asleep holding things like an individual packet of butter the other day at the hospital, literally fell asleep with my thumb in the butter.

encouraging words and nice meals are helping with the transition home. Comfort food made by friends is way better than hospital food any day.  Charles wants me to have limited "screen time" but at this point, the only things I'm really in control of are when I take naps and communicating with the outside world through phone/computer.

Next big hurdle is going back for 2 week follow-up and to hear the pathology. Could be a long, itchy wait.

Going home!

I've had a shower, decent meal and get to go home soon, I feel like a million bucks, well not really but pretty good for having brain surgery 3 days ago.

My newest physical attribute

I'm trying to familiarize myself with my newest physical attribute. Right now I know there's at least 20 staples and one glue stick worth of dried bliod, I know pretty picture, I actually have a very not pretty picture I could share. Maybe I folk instagram for those brave enough. Vote?

Getting pain now.

The PA came to take off the original wind ddressing that was stapled to my scalp so that was Interesting and now the scar is open to air. Plus now I have a new side effect, swelling in my forehead and eyebrows. It's painful. I have ice packs to put on it but it's getting worse and might spread into my eyelids. Fun. Instagram baby. My sinuses are popping too, like there's lots of drainage going on hearing and feeling popping in my cheekbones and eyebrows. tonight might not be restful.

Headache

I guess it's to be expected  that I would have a headache but I was hoping this would take care of them. I hope this is just from the surgery itself and not the tumor anymore.

Met with attending physician

Taking off the wound dressing today. Should pinch when they remove the staples, I imagine so. It hurts when I laugh or grin so I hope this helps get some flexibility back in my scalp.

I was on low carb diet because high blood sugar is bad for wound healing but should be back on "normal food tonight or tomorrow

Might go home saturday or sunday.

Visitors

I'm open to covisitors today as long as you don't kind my grossness. I'm going to ask the attendings to change my wounds dressings but no guarentees. No kids please. Contact charles first, he's the gate keeeper we're in zayed tower 12i east room 64. Park in the orleans street garage and use the pedestrian bridge.  

I did meet with the surgeon

And I actually remember some of it before the surgery we asked if the initial look under the micro scope seemed obviously malignant that they would do a  localized  chemo treatment. When he came to see me this morning, he said they didn't use the chemo chips because "it's most likely a favorable diagnosis."

Lots of meds I'm on

I'm on steroids to prevent swelling  so my blood sugars are high I'm getting insulin shots and on a low carb diet. Lame. Heather, now I know how barrett feels. My electrolytes are off so I was getting calcium and magnesium by iv in addition to fluids and antinausea meds, lots of those and pain killers. Now just tylenol by mouth, I miss the stronger stuff. I can feel each staple in my scalp.

View this picture with a strong stomach. It's pretty gross.