House Arrest, S.A.D., Songs, and Spaghetti Dinners

To say it's been an eventful couple of weeks since the last blog update would be a understatement of epic proportions.  Once again the seed of an idea would come to me and I'd start to think about it in terms of a blog post. Just when it was starting to come together and I was feeling ready to sit down and bang on some keys the road we're traveling would take an hard unmarked turn and all the little boxes of our life that we were just starting to get organized and stacked neatly would fly across the car and break open - their contents spilling all over the upholstered seats (why didn't we just pay for the leather?)  We've spent so much time picking up the pieces that it's hard to reflect on any specific event in enough detail to properly write about it.  Things are just happening so fast.

I've not wanted this blog to just be a recap of what is going on in our lives, full of medical terms and details.  I feel like most everyone gets that on Facebook from either Jamie or I and while it's fine in that form, I think it would become tiresome here.  I've always tried to find some theme in what is happening in our lives as we deal with cancer and weave our experiences around that theme so that it remains interesting and thoughtful.  Even though I'm mainly writing this for myself, I am aware that, though the audience is small, I'm not the only one reading these entries. I try to make it as enjoyable / insightful as I can for everyone who takes the time to read the blog.

I've also purposely avoided shorter posts. I'm not sure why exactly, but I have never felt like I should be able to get away with just publishing a paragraph. I realize it's completely ridiculous.  Hemingway is one of my favorite writers because of how brief and concise he was. He could write paragraphs that would seem unremarkable. The words would be simple. The sentences wouldn't contain a lot of adjectives and adverbs or flowery language, yet his short stories, in particular (and some of them are incredibly short), remain some of the most powerful writing I've ever read. I have tried to adopt the Hemingway principle in my own writing and write using only the words necessary. I'm not sure why I haven't extended those guidelines to the length of entries. I'm realizing that I need to get over this hangup about publishing only a paragraph or two; our life is too chaotic right now. So in the future I may be updating more frequently though the entries may be more brief.

I'm going to try and embrace the idea here in this single blog entry and spend the rest of the time briefly covering the events of the last couple of weeks and some of the ideas I've had surrounding them. They all probably deserve a more thorough treatment, but I'm learning that when you are living with cancer, you just have to do the best that you can, be okay with that, and forgive yourself the rest.

In the last entry I spoke glowingly about Jamie and I plan to do a little more of that in this entry.  She's an amazing wife and a fantastic mother and I couldn't love her anymore than I do, but there's more than just love to our relationship. I genuinely LIKE my wife.  She is my best friend and that is by no means obligatory. She truly is my favorite person and I love spending time with her -  going out with her and doing fun things and now it seems like we just can't.

When we got our diagnosis, we knew that our lives were going to change dramatically. We knew and accepted we were giving up the weekend getaways and road trips. We accepted that we were probably going to have to give up our weekly kid free Saturday nights and Sundays. We didn't expect that we'd have to package up our entire social life into a canister and bury it in the backyard next to a little marker that says "do not open until Aug 2013." 

We've tried on three occasions to do something fun together and all three times have ended with us at Children's hospital ER. The latest incident occurred the day after the Zumbathon. Aidan was feeling great and looking pretty good and really wanting to spend some time at grandma's house. So we planned a Dylan day (lunch out and a viewing of "Wreck It Ralph") followed by an evening out participating in the yearly scavenger hunt we've done with friends the last couple of years. Dylan's day was fun and when we dropped him off at Grandma's house Aidan was feeling fine. We met up with our friends and got ready to try and spend an evening doing something other than thinking and talking about cancer. We didn't even get to the starting line. We got a call that Aidan was fevered. Jamie placed a call to the oncology hotline. He had to go back to the hospital.

It was supposed to be a simple trip. Get his port accessed, draw blood and get his counts.  Get a dose of antibiotic. An ANC of 500 or better meant discharge.  Under 500 meant hospital admission. We went into the ER around 7 PM, but somehow it took until 4 AM to get admitted to the hospital.

The two other times we tried to do something fun landed Aidan in the hospital too. Maybe we are unknowingly and coincidentally picking bad times to try to spend time together, but it really is starting to feel like we're cursed. It feels like we're causing his hospitalizations by trying to get away from his diagnosis for even just a couple of hours. We haven't had a conversation since late September that wasn't about cancer, and as depressing as that is, we've learned to accept it. Is it too much to ask to be able to do something fun once a month? It sure seems that way. I miss my friend.

A few weeks ago we turned the clocks to end daylight savings time. We've lost more and more daylight steadily since then. Even though it's been fairly mild weather wise, this is the dead of winter for me. It's dark in the morning when I leave for work and dark at night when I head home. Every year I struggle with Seasonal Affective Disorder.  I get cranky, tired, angry, and generally just feel apathetic. Jamie got me an artificial sunlight machine a few years ago, but most times I feel too apathetic to turn it on. 

I didn't give S.A.D. a whole lot of thought this year, and if you asked me if I thought it would affect me, I probably would have said "Aidan has cancer, how much worse could shorter days and lack of sunlight really make me feel?" As it turns out the answer is "quite a bit."  

Aidan's diagnosis has already given me most of the symptoms I usually experience from S.A.D. but lately they just feel like they have been amplified and much harder to shake.  A month or so ago I might feel really sad for a couple of hours, now the sadness stretches to a day or more. I feel more angry now than I did before. My apathy has increased as well and I find myself struggling to be productive and take care of things that need my attention because I truly couldn't give a damn about them.  

I am even finding it hard to make myself take my daily runs lately despite how much better I feel after I run. For much of this year the only thing that occasionally felt tedious about the running streak was just finding the time in the day around our busy lives. Excepting the day we received our diagnosis and the day after, The actual act of running has always been a pleasure. There are just 31 days left in the year. I've run on every single one of the previous 335 and already surpassed my initial goal of 1000 miles. I should be excited to be in the home stretch of my running resolution. Instead it's become a real struggle lately. During the week, work and my general apathy keep me at my desk when I should be outside running and then in the evening when I force myself to keep the streak alive and run, it's either a depressing run the dark and cold, or an equally loathsome run on the treadmill.

S.A.D. really hit me the hardest last Sunday. That was the day our community threw our family the biggest and most impressive Spaghetti Dinner fundraiser our town has ever seen.  The event was held at our local VFD social hall. I'm not sure what the occupancy limit there is, but the place was packed from 11am - 4pm. It seemed as if the entire community came out to support Aidan. Volunteers cooked, and served. Local businesses donated baskets to the Chinese Auction, and volunteered their services. The food was amazing and the event was a huge success. Jamie and I received much support and many hugs from friends and strangers alike. We owe thanks to all those who volunteered, and all those who bought tickets and came to the event.  

When the event had ended I should have been feeling positive and basking in the glow of the amazing outpouring of support we received, but I wasn't. The thing about S.A.D. with me is that it makes me focus on the negative things that happen and the feelings that arise from those events even when the positives far outweigh them. So despite all the love and support that was showered on our family, I found myself unable to shake the feeling of sadness and sense of impending doom that arose from meeting an extremely nice gentleman who came to the dinner to offer his support. His son had just recently passed away from Ewing's and even though I know he was trying to be helpful we could still hear pain, grief and bitterness in his voice as he told us about his son.

We know that everyone's journey with cancer is different. Even people with the same diagnosis have entirely different cases. This man's son contracted Ewing's in the worst possible spot (the pelvis) at the worst possible time (as an adult) and Aidan's case is nothing like his but despite all that I found myself feeling sick to my stomach and incredibly sad. People tell me how strong I am, but the truth is that I have to work really hard to stay positive and push away the dark and painful thoughts that try to consume me. Meeting that man was just another reminder that it's possible that our family might not make it through this battle in one piece. All those dark thoughts came rushing back.

I also started feeling hurt and disappointed that despite the incredible turnout for the event many of our closest friends were unable to make it. When I expressed these feelings to Jamie she not only validated me, but confided that she was feeling the same way. As I mentioned earlier, Aidan's diagnosis has  put us out on an island - isolated and unable to get out to see our friends or have any fun. We had hoped that between the Spaghetti dinner the Zumbathon we would get to see them all for a least a minute or two but it didn't work out and we feel like we are slowly drifting away. We're afraid that when when we're done with this journey everyone will have moved on from us and we'll be alone. 

It took me two days to get out of the funk I was in. I've gotten outside to run during the day the last few days and getting some sunlight on my face has made a huge difference in my outlook. I'm going to have to force myself to get out there and run and start using my S.A.D. light or it's going to be a really long winter.

I'll end with some happy news. Two weeks ago, we started a project called Songs For Aidan. The idea was to try and get musicians and singer / songwriters to record a youtube video of them playing a song just for Aidan and hopefully include a personal get well message to him. I created a youtube channel (www.youtube.com/user/SongsForAidan) and a little web page explaining the project (http://live-the-proof.com/songs-for-aidan.html) and we started reaching out to our favorite indie artists in hopes that they would not only contribute but spread the word among their circle of friends.  

The response so far has been nothing short of inspiring. I'm getting at least one email every day about participating.  We've gotten a ton of great commitments and already have one video from singer songwriter Jane Fallon which is absolutely perfect

please help us spread the word about this project. We really want to fill that channel up with songs for Aidan so that when he is feeling down he can pull up the youtube channel on the computer, feel really special and hopefully find a reason or two to smile.