Val vs. Cancer: My battle against a rare brain tumor: August 2016

I am now waiting for my next MRI.

We are 3 weeks out and I was a lot less anxious this time.

But I am now ready for it. I have two bridal styles on separate weekends, and the kids start school, so I know the time will go by fast.

I need that reassurance that everything is still good. I also need to see my ENT, Dr. Corsten. I have had constant sinus infections for six months. I've tried two different antibiotics, but it's never gone for long. I always end up with side affects from the antibiotics too, so I'd prefer to hold off until I can see him before trying anything else.

My sinus details are gross, but I'm gonna talk about it anyway!

I constantly have a smell inside my nose, and at least once I week, usually 2 or 3 times, it's hard for me to breath and I can feel something back there, but it won't come out. It must mess with my nerves because it causes a zap and zing feeling to all the nerves on the right side of my face.

Eventually, I feel something break away in my sinus cavity and it starts to go down my throat. I spit it out onto a kleenex and its a hard, super dark green blob. It's gross. (But kinda cool in a weird way?) I think it all builds up back there and can't fit out of my nostrils, so down my throat it goes. I don't ever swallow it because I want to see what it looks like and I'm sure it's not good to be in my system anyway.

Sometimes I take pictures of it! Okay, most of the time. Every time.

For doctors to see. For my friend to see that finds it all fascinating. For my kids to see and make disgusting faces at it. Haha. Iv'e tried to show my mom, but she will NOT look at it. My dad did once, but that was enough for him. My friend Amanda, who finds it fascinating, gets a pic of every one. Sometimes even a FaceTime of it if its a really good one! (Hahahaha!) Got to find the fun in it right? Don't worry, I wont show you all a picture of it! It's not even gross to me anymore because I've been seeing it for months now. I hope we get this figured out at my next appointment. It'd be nice to not feel like I have a sinus infection 24/7.

I am now working six hour shifts, four days a week. Some days I need to work an extra hour or two. I am totally exhausted after those shifts. It's okay if it's every now and then, but definitely not an every day thing for me. When I am at work though, I work hard. I make use of every minute I am there. I usually do two colors at once, or an extra haircut during a color. I work like crazy for the six hours to get eight hours worth of clients in.

I still have all the numb areas I have talked about before. Nothing has improved since then. So, I think that where I am at, is where I will always be.

I've accepted that.

I was much worse in the beginning, so I'm thankful to be beyond that point. But I really wish it could have gotten better then where I am. I get self conscious about my eye. The shape is not the same as the other and the bone structure (titanium) around that eye is a little different then the other too. I know, for some stranger walking down the street, they would have no idea anything is wrong. But, of course, everyone is their worst critic, right? My vision in that eye isn't great either. I can't look out the corner of that eye or I see double. I do have glasses that I sometimes wear and they help for distance. My lower right lip is a problem too. It doesn't like to move too much. And if I'm tired, that eye and lip, are even worse looking then when I am energized.

Not that I am ever REALLY that energized. I am always tired. I think it is a combination of being a mom (that's exhausting right there!), but also from all the brain surgeries, the chemo, and radiation, too. They say it can take over a year to heal from brain surgery. I can't help but wonder what having five brain surgeries in less then a year can do to someones energy. I hear from a lot of people who have had chemo and/or radiation that they are tired, too.

I have the sore spot behind my ear still too. That will never go away because its a corner of the titanium. I am going to bring it up to my doctor at my next appointment. I wish it wasn't there. But, I'm thinking the only thing that can be done is if they opened me up where it sticks out, and sanded or cut that corner off. I don't think my doctors will go for that...but one can hope! It would be worth it to me.

Eating is still the same. I only eat on the left side due to the right side being numb. I still bite my lip a lot, but I'm much better at taking pills. I don't usually have one sitting in my cheek! My jaw is so loose that I clench my teeth shut at night when I sleep. If I don't do that, then my jaw is pushed to the right and I woke up super sore. But clenching my teeth sometimes causes a headache and its not good for me teeth either! I try hard to sleep on my back but sometimes that just isn't comfortable!

I am lucky that I didn't have many side affects from the brain surgeries. Some people lose their memory, others their speech, some need to learn to walk again. I, luckily, had very little of any of these. I notice sometimes I draw a blank when trying to think of a word or someones name that I know. More so then before. I know that this is normal for everyone! But they say people have 'chemo-brain' for a while afterwards. It could be from that. It could be from surgeries.

zero extensions! Finally all mine!

Towards the end of June, I was finally able to take out my extensions! My hair had grown enough on the right side to blend in with the rest. I keep cutting it because I actually like the short hair and I wanted everything to catch up so if I do decide to grow it out, there aren't any short areas. My bangs are getting there. They take longer to grow then the rest of my hair though. I have had wigs or extensions for 20 months!

And I am now free of everything! :)

When I was going through chemo, I could not stand in one spot without wanting to pass out. Doing my makeup and messing with my wig made me very tired or sick feeling and I had to keep taking breaks. So, I decided to buy a vanity for my room. To this day, I am in love with it. I make my coffee in the morning, and go sit at my station to do my hair and makeup. I think after looking so scary in the hospital, I enjoy sitting there doing my makeup and hair each day. I have a 'normal' looking face to put it on, and I actually have hair to style.

I think trying to look put together helps me to feel..."okay" everyday.

And I keep playing with my hair color, too. I now look at it as hair that can always grow back. So I shaved the underneath. I keep cutting the length. I try different colors. Which I would never do with my long hair.

Don't get me wrong, I miss my long hair.

But I don't think it actually has to do with the length of my hair. It has to do with the healthy and worry free person I was before I had cancer.

I will never be that girl again.

Yes, I am the same person that I was before...but now I worry each day that my cancer will start growing. I see things differently then before (more for the better). I do what makes me happy. I always say, as long as I am happy, and my kids are healthy and happy, nothing else matters.

I am so tired though.

Will I have a future with my kids?
Will I ever get married again or have babies?
Is it even smart for me to think of having any more children?
That is just more loved ones to leave the day I die.
Will I find that person that is willing to go into a relationship with someone who has cancer?

I know that anyone can die on any given day. But I feel like it is hanging over my head much for then it is for a healthy person.

The unknown is scary.

I know everyone has it..but I feel like mine is pretty extreme. I try not to think of it, and just live day by day...

...but it crosses my mind often.