Frustration

Today is not a good day…but then again it is a good day.  It is one of those “profound” days I suppose.  A day of realization, sometimes those are good and sometimes those are bad.  Today I realize how much I miss having a life.  I know that of course I have a life, but sometimes I feel so alone and unimportant.  I am in this state of limbo waiting – waiting for people to get off work or waiting for the weekend so that I can see Steve.  The weekdays are the worst because it seems that all of my friends are busy living their lives working, looking after their kids, running errands, etc. and I do not have any of this stuff to do.  I have lots of stuff I could do, but there are only so many hours a week I can scrapbook or read or clean my bathroom.  I also have lots of errands I could run, but without a car I need to wait for my parents to finish their days to drive me in the evenings, or for the weekend when Steve can drive me, and I hate wasting my time with him running errands.  I know that many people have offered to drive me places but I am really having a hard time accepting help…  I don’t want to waste people’s time by getting a ride to the bank and Michael’s.  I just really want to do it on my own and get mad and frustrated when I can’t.

P.S. I do plan to start my “River Journey” – see Wrong Way to Hope blog.  I think tomorrow may be a good time to start that, seems I need some clarity.

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New Feature – Guest Appearance Blogs

Many people have told me that this blog has inspired them to think more about how a cancer diagnosis effects their lives, how they have been effected by my journey, and how much they think blogging is an effective communication and therapy tool.  Since I have now heard it by quite a few people I decided to try something new… guest appearance blogs.  There is no limitations on what can be discussed in these blogs and I welcome people to cover whatever is most important to them.  I have created a new page called “Guest Appearances” where all guest appearance blogs will be posted.  I will also post them on the main page for a few days, after this time they can be found on this separate page.

Steve has written his first blog post, which is below.  I am really excited to see where this goes and see if anyone else is interested in sharing their stories with others.

As always, I welcome your thoughts and hope to spark some discussion!

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Oh, I know

By Steve Frangakis, May 10, 2012

It’s been 166 days since Lyns and I first found out that she has cancer. The longest stretch of time I’ve spent away from her since then is probably about 5 days, so I’m no stranger to what she’s been going through… oh wait, I am. Truth be told despite all this time spent with Lyns, listening to how she’s feeling and seeing her emotions, I still have absolutely no clue what it is like to have cancer. One or two times I’ve caught myself saying “Oh, I know” when she’s trying to explain how she’s feeling, to which she would snap back, “Um, no. You don’t.” and she’s absolutely right. I don’t know, and unless you have or have had cancer, neither do you.

Stop and think about that for a second, and see how you feel…

For me, and probably for anyone who spends or has spent a great deal of time supporting someone with cancer, it’s a very bittersweet feeling. Of course I consider myself to be extremely fortunate not to have experienced that, but at the same time there is an inability for me to even begin to understand this part of her life. At times, it’s very frustrating because it’s right there, right in front of me, day in and day out- and I haven’t a clue.

I like putting things into analogies to help myself and other people understand them, so here’s what I came up with to describe this feeling… Imagine you have this box or container in front of you that you carry around with you everyday; it’s with you all the time. On the box is a label that reads “THERE’S SOMETHING BAD IN HERE”. You cannot open this box; you do not know exactly what is inside. You just know that it’s bad, and that’s about it. No matter how much you look at it, listen to it, etc. you just have no idea how bad the thing inside is, or how you would feel or react if it did open and you saw just what exactly was in there.

I came up with that analogy pretty quickly off the top of my head, and even as I’m writing I’m still trying to make sense of what exactly all those things mean. So far, I’ve come to the conclusion that the box and label represent our knowledge of the existence of cancer, and that it is bad. The inside is the twisted mess of the unknown things that come with it; the fear, the treatment, the emotions, etc. For people with cancer, this box has been opened, and they know. For the rest of us even if we know someone who knows what’s inside the box, we cannot walk up to them and tell them that we also know what’s inside. Because we don’t, it’s as simple as that.

To My Firecrackers…

Hello Everyone,

Sorry for being totally MIA for WAY to long.  As most of you probably know the past couple weeks have been just crazy for me (crazy in a really good way).

On Saturday April 28th my cousin Becky, friends Lacey & Jen, and boyfriend, Steve threw me the most amazing party.  It was without a doubt the best night I have had in ages and was blown away at how many people came out.  I know everyone had a fabulous night of dancing, socializing, playing games and winning prizes.  They raised over $5,000 and the big surprise (for me at least) was that it was a fundraiser for me, not The Firecrackers.  When they told me this at breakfast the next morning I was just blown away and once again shocked at the generosity of my family and friends and all the local businesses that donated amazing prizes.  I donated $1,000 of this to the Brain Tumor Foundation through the Firecrackers, $500 of it went towards buying a beautiful Digital SLR Camera (Cannon Rebel) which I have wanted for a very long time, $500 went on my credit card and I am saving the rest for a “raining day”.  I have already gotten very good use of my new camera and am teaching myself more about photography.  The great thing is that I can take pictures when I am feeling great and even when I feel really crappy!  A HUGE thank you to all who helped organize this amazing party, who came out and partied with us, and the amazing donors.  It was a blast and a night I will never, ever, ever forget.

I had only a few days to recover from staying up so late, before another amazing event happened.  Saturday May 5th was the Spring Sprint and the event that myself and all the other Firecrackers have been looking forward to for months.  This day was also amazing and absolutely perfect!  We ended up having 86 people on the team who showed up for the run and we raised just under $30,000.  The dedication that all my team members had to the cause is inspiring and certainly did not go un-noticed.  The amount we raised was more than the entire Guelph Spring Sprint raised in its first year and it was more than half of the money that was raised by the Guelph Spring Sprint this year.  For anyone who is still interested in making a donation they can me made until July 31.  Online donations can be made at http://my.e2rm.com/TeamPage.aspx?teamID=268133&langPref=en-CA

I was honored to have been asked to speak at the run.  It was great having the opportunity to share my story and learn more from other brain tumor survivors.  A very close friend of mine offered to do face painting and body art at the run and it was so much fun being able to see all The Firecrackers looking super stylish in their black t-shirts and firework painted faces, arms & legs.  Thank you Cathy for making sure my wish of having each team member painted was achieved!  After the run, my team headed to Riverbend Park where we had a delicious lunch.  I was so happy to be able to talk to my team members more and catch up with friends I hadn’t seem in years.  It was a perfect day, and even though I was exhausted I couldn’t sleep that night because all the smiles, laughs and hugs kept floating through my head.  I think I have looked at the pictures from that day 1,000 times already!  Hahaha

And to finish off this blog post an excerpt from my Sprint Sprint Speech…

“There certainly have been a lot of awful things happen since my cancer diagnosis, however, there have also been a lot of amazing things.  Forming and leading “The Firecrackers” has certainly been one of those amazing things for so many reasons.  Firstly, the support that I have received from my friends, family, and friends of friends has been phenomenal.  Through “The Firecrackers” I have formed so many lasting relationships and grown closer to many people.  I am so extremely grateful to have such amazing people in my life.  Secondly, it has given me a great “project” to throw myself into.  I am sure my team will not miss the weekly e-mails “harassing” them to raise more money!  I really miss working and this became my job for the past few months.  Finally, and possibly the most amazing thing about “The Firecrackers” is the phenomenal amount of money that we have been able to raise.  As of this morning (before the cash donations were even counted) we had raised $27,424.  Considering that my original goal was $4,000 it just blows my mind that we have been able to raise such a huge amount of money.  This certainly took a lot of work and some very creative fundraising ideas.  For example, my friend Jenna made and sold hundreds of bracelets to her friends and family.  My friend Matthew’s friends feared for his safety in attempting to do a 5KM run (he isn’t a go to the gym daily type of guy) and said they would give him $20 each time he ran 5km in preparation for the run.  This week alone he has run 25km and raised a few hundred in doing so!  So, to all “The Firecrackers” and all the other amazing teams and individual fundraisers, thank you from the bottom of my heart for supporting me, this cause, and all brain tumor patients and survivors.”

Thank you all for your love, support, prayers and friendship.

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The Firecrackers!

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Steve, Erin, Amy, Brooke, Jo, Lynsey

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Fam Jam – Tyler, Lynsey, Mom (Mary), Dad (Martin)

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Bella – the youngest Firecracker!