So Far and So Good

I'm off to a very good start! I have a few things checked off my list for project: 29 and a few unexpected good things that happened!

Things checked off my list:

1. Start a new family tradition.

Ring in the new year in Pittsburgh! Started this year :) I'd be down if Adam wanted to make it a tradition to cook us an amazing ten-course (yes, TEN. That is NOT a typo.) meal every year. ;)

 

 

2. Find the right lip color/balm.

 

I had been fruitlessly searching for the perfect red color, but they always make my lips look hot pink (not very attractive)! So, for me-what works is: Bite Beauty lipstick in "Restina," Nars Larger Than Life lip gloss in "Como," and Fresh Sugar Shine lip treatment, all from Sephora. Yay!

 

3. Have as many fondue dates as possible.

 

 

Fondue makes me very, very happy so it was only natural to add it to the list. We have had it twice already and it's only February!


4. Give a deserving person a very large tip.
Done. :) It would have been tacky to take a pic so you'll just have to trust me on this one. I'll also be repeating this goal!


5. Get a tattoo.

 

4 hours on February 15th and this one is completed! I wanted a compass to signify navigating through difficulty and finding my own path. Between you and me (and the internet), I'm really proud of myself for sticking through it for the whole time!

 

 

Unexpected awesome thing: monthly cousin get-togethers

 

 

 

 

Not too shabby!

new things.

It's been a long time since I've written-and a lot of things have changed!

 Because of my "old things" post, I decided to make it my goal to document what's happening NOW. I took pictures, I saved mementos, I made a summer "bucket list" and fulfilled it, and made a framed collage of what I consider to be accomplishments and new good things.

I also needed to find a way to embrace the NEW. since I cannot go back, I need to move forward. last year, I felt like I was freefalling and trying to put the puzzle pieces back together. I needed to TRY things-even if I was scared. I tried to say YES more.

My foundation is now something I'm very proud of.

I look different. I decided to embrace the short hair and got it cut shorter. It felt wonderful to go short on my own terms rather than short due to treatments/surgery.

I know different people. I have worked on building relationships with worthwhile people who add to my life rather than cling to what "should" be or wishing my family dynamics were different.

I had the strength to leave something that wasn't good for me. I was blessed to find something that has been very good for me. Something that has given me both a sense of purpose and a newfound desire to be better and to do more. Something that has allowed me to meet and serve with the best people I have known and that has embraced me for who I am.

I have had to start over many times-even at work, I have moved buildings and grade levels twice just since I've finished chemo. Each time, everything has turned out okay. I realized that I don't have to be scared of starting over.

I still get frustrated when I see the effects of the past and when fatigue sets in and when I have so many appointments...but I am living and almost-normal life now.

This year, I want even more. It's time to feel like I am LIVING to my fullest. Cue: project 29. I have made a "bucket list" of things to accomplish this (my 29th) year. Some are small things, some are silly things, some are unexpected things....all are things that I can look forward to so that I can point to this year with no regrets.

old things.

Sometimes I miss my old life.

I recently came across a picture from from Tim's cousin's wedding (2009) and I almost can't believe it's me. The same feeling hits me whenever I see a picture from "before." I look happier, stronger, prettier, more energetic, more fun, much more hopeful....

....and I'm brought back to the reality that I can and will never be the same.

I'm trying to embrace the "starting over" aspect of this stage in my life, but it would be so much easier if I didn't have to.

Maybe I just had more "proof" then. As I take these dangerous strolls down memory lane, there are hundreds of photos from better times. There are dozens of songs and scents that instantly take me back to moments from THEN; when they are encountered, they excite and sadden me simultaneously.

But what about the NOW? Now that I'm "better," I am left with fewer people that I can count on.

As my hair grows out, I am becoming more disconnected. While I realize that many changes needed to be made, it's difficult to adjust to everything at once. Why does the NEW normal have to be so lonely?

My energy levels are not consistent. Sometimes I just want someone to come and sit with me-but I go through my address book on my phone and I have no idea who to call. So I don't. I write a blog post instead.

I just want to be happy or comfortable. I know that it's too much to wish for both-or either.

what tragedy does.

Sickness comes in quickly and forces you to face things that aren't comfortable. It strips you of security-even the security of knowing that you will make it through the day with no problems.

It makes you analyze your relationships in that it reveals who other people really are (it's easy to coast when you only depend on yourself). It makes you reflect-on your life, on your beliefs, on greater meaning.

You spend time waiting it out, hoping that your life will return to "normal" after a certain amount of days or months-but it can never be what it once was because you can't be who you were-and no one is who you thought they were. Or, at least, not who you need them to be.

So you try to rebuild from scratch. And it's exhausting. You try to be positive and consider it to be an opportunity to "start over," but your foundation has been torn apart.

Who knew that the cancer itself would be the easiest part to heal?

city of gray.

"I have woven a parachute out of everything broken."
-William Stafford
Every single day when I was in the radiation machine at Roswell Park, I would imagine what it would be like to launch this project.

http://www.kickstarter.com/projects/983470214/city-of-gray?ref=home_location


Next Friday is our project deadline. If it's not fully funded by then, the project fails and we get nothing. It is my hope that anyone who knows us (or happens upon this blog for whatever reason) will help us reach our goal by helping us spread the word and backing us, if you can.

what brain injury survivors want you to know.

http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html


This article was brought to my attention by another brain tumor survivor; I could have written most of it myself-particularly:

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.




One of the members of my medical team has told me that brain tumor patients have TWO brain injuries: the damage the tumor has done and then the surgery itself.

turning point.

You have all been through the trenches with me over the past few years-so I thought you deserve to hear something good: I've had a very good week! I'm sure it helps that I got to see wonderful people almost every day this week! Also-my car is back on the road and I drove for the first time in almost 2 years. I have had more than 2 good days in a row and am feeling very hopeful for the first time in a LONG time. :)
It's been an extremely difficult road-but I hope that this is the the turning point.