March 10th, 2008
Another middle of the night blog, I may as well be a hamster.
It is quiet and dark and while most of the world is asleep, my mind won’t shut off. Bedtime used to be my favorite but now I find it is the worst time of the day. I don’t seem to have the ability to rest and it makes me anxious to lay awake thinking. So here I am.
Logan is still struggling with her cycle of nausea and swallowing difficulties. Although her headaches have improved, she is clearly not feeling well and is exhausted easily. It is very worry some. I know the doctor’s said a deterioration could be expected but watching her get worse instead of better is not easy.
I am doing my best to be logical. It has only been two weeks since her last surgery, so her brain is probably still very much like a dog’s breakfast, but I am on the edge and any slight change almost pushes me right over.
We started a her on another new drug today (yes another one) in hopes that it will help reduce some of the swelling around the tumor and bring some relief. It is a steroid, and it makes her angry. All the medications have side effects and I can’t help but wonder if any of them are actually helping or just making her feel worse.
It is such a balancing act managing so many medications. One new drug equals 10 new side effects.
Are the side effects worse than the drug? or is the cancer worse than the medications?
Who knows? And do we really have a choice?
Without the medications or the treatments, it is obvious Logan wouldn’t be alive, but it also can’t be good putting all these toxic substance in one tiny body.
The tremors in both her hands are getting worse and it is making it harder to do the things she loves to do. Art projects are more difficult for her and she is getting very frustrated. I think we have about forty five attempted crafts lying around the house right now.
We got out for a bit today which was nice. We all needed a change of scenery. We went shopping (Logan’s favorite) and then we went for dinner at a fellow oncology families restaurant in West Vancouver (Mangia e Bevi ). We had a great time catching up with our friends Reid and Diane and although the day was simple, it was great.
We laughed and did a few ‘normal’ things and just for a little while we forgot about brain cancer.
I think we forget to do that sometimes.We forget to just forget.
The whole reason Logan is doing all of these treatments is to live, to forget about cancer and leave it behind. I need to remember that, I need to remember that sometimes its OK to just forget.
It is so easy to get wrapped up in sadness and fear, anxiety and stress and to let those emotions overshadow gratitude and happiness. Overall, our circumstances are not great right now but that doesn’t mean we don’t have a lot of great things and people in our life.
I think I need to make a better effort to focus on what brings us joy rather than putting all my energy into the one big thing that is bringing us so much grief. Cancer shouldn’t have that much power.
It is cliche but ‘Life is a gift’ and it is the simple moments that make it worthwhile. Tonight I watched as Loggie do her best to scarf back a big plate of spaghetti and I was reminded of those simple gifts. Tonight I wouldn’t have to feed her out of a tube.
I guess that is how it is, sometimes gifts are small and they come in the form of a bolognese sauce and sometimes they are big like making it through a major surgery. But life is also plain and ordinary so we don’t always see the gifts in the everyday, like having to do another load stinky laundry (thank god we have clothes) or paying another bill (thank god we have a line of credit…haha).
Experiencing any moment means we are alive and that in itself is a pretty big gift, one almost none of us acknowledge.
Pardon me… for being very deep, but I guess this is what happens when you are faced with life or death. A shitload of contemplation.
‘Life is not measured by the breaths we take but by the moments that take our breath away.’
I am staring at a sign hung on my wall with these words written across it.
So, True.
However, I can’t help but think, life is also NEVER measured by the things we wished we’d do, it is measured by the things we actually take the time to do. Life is measured by taking chances.
It is measured by the quality of friends you have, and the family you have created for yourself even if they are not your own.
It is measured by finding your own true happiness. Period.
Life is challenging, as hell.
Sadly I have an inclination it will always be this way. There will always be struggles, obstacles and circumstances we will can’t possibly understand. Maybe we just aren’t supposed to.
I think Logan knows this. She doesn’t question the reasons for what has happen to her. She never asks ‘why?”. She just lives each moment, each day and is happy for the good that comes. She doesn’t dwell on the bad, she can fall asleep at night, find peace, shut her brain off and let go. I have so much to learn from her.
I hate end this post with such a heavy message, so I will share with you a cute and somewhat embarrassing parenting moment about my other child, Brody. My ‘other’ child- oh crap, that statement is so terrible. Note to self- I need to write more about Brody. So often siblings of childhood cancer get left out- of stories, attention- experience and life. Not fair- I’m going to try to do better.
So about Brody.
Brody is the funniest, coolest 4 year old kid out there (biased mom opinion). His vocabulary does not match his age and he is so sharp and quick witted that he continuously shocks us with the things that come out of his mouth.
He’s in preschool and he loves it. It is a parent participation preschool and I feel like the shittiest mother on the planet because I haven’t participated once in the last couple of months. Instead I just pay the ‘I’m useless fee’ and someone else picks up my shift. Needless to say, I haven’t made many mom friends.
No one has any idea why I am not involved but I am sure they have made up all kinds of reasons why I am such a slacker. I can feel the negative energy and judgement pointed in my direction every time I show up to his class. It probably doesn’t help that I usually look like I’ve just been hit by a bus. I know they all think I am a total disaster- I guess I kind of am.
But yesterday instead of avoiding their obvious stares, I awkwardly approached the group and tried to participate in the conversation. I tried to make an effort, possibly solidify a few play dates for poor Brody.
That didn’t happen.
The ‘perfect’ moms were standing around in their usual pod wearing their brand new lululemons looking polished and chipper. I strolled in on two hours of sleep looking gaunt and disheveled and joined mid conversation. I quickly realized that I didn’t have much to offer. It was more of a competition than an exchanging of words and It was clear someone was vying for the ‘perfect’ mom award, it definitely wasn’t going to me. They talked around what sports their kids were involved in, what toys they allowed them to play with and the seven hundred activities they had participated in that previous weekend- which was why of course ‘they’ all looked totally exhausted- (all eyes directed at me)
As they spoke the kids filtered out.
“I took my kids to see the bee movie” a perfect mom said proudly.
“Oh I love that movie. My kids have already seen that one four times. I just bought the movie Surfs up” said another one. “It is such a great movie…probably the best one I’ve seen for kids in a long time…” They looked at me.
I nodded politely acknowledging the conversation without contributing. Poor Brody hasn’t seen either of those movies and I had no plans to add watching them to my agenda any time soon. We have radiation and four hours in the car to deal with damn it. There will be wine and bed time when I get home.
I smiled at them, grabbing Brody’s backpack about to walk away just as he made eye contact with them.
He could sense I was uncomfortable and it seemed like he wanted to rescue me. Very seriously he stopped, made eye contact and blurted out “OH ya- well we watch movies at my house too sometimes, and last night we rented KNOCKED UP, and it is a really good movie”
He winked at me and proud as a peacock- with a ‘take that’ attitude he ran off to the playground.
The perfect mom’s mouths dropped wide open.
PRICELESS (thanks for the gift B-dog)
Of course I could have died right there- and he had no idea what he was saying- so I should have scrambled to correct him, but he felt proud of himself for shutting them up and that made me proud of him too.
I opened my mouth to back track, and explain to the perfect mom’s that I actually had not let my four year old watch an R rated film the night before but all that came out was laughter. I must of looked like d delirious lunatic, which will only give them more reasons to talk about me.
I sighed.”Poor kid, someone really should take him to see the bee movie. Call me if any of you are going. We could have a play date….”
No one said a word.
No Bee movie for B- but god I love that kid. Bless his little heart- he is so worth the thousands of dollars I am going to have to pay for his therapy one day.
