Tonight's picture was taken on February 6, 2009. Mattie was in the child life playroom of the hospital and working on building a volcano. Back when I first started writing the blog, I tried to show only the most flattering photos of Mattie. Photos that may not have shown the reality of what we all were dealing with. I did this because it was hard enough for our support community to accept that Mattie had cancer, but seeing what we experienced on a daily basis most likely would have scared people and even turned them away from reading the blog. The reality was Mattie's limb salvaging surgeries left him quite disabled and traumatized. After surgery and healing, Mattie would never have been able to lift his arms up over his head. His range of motion was severely limited and this frustrated him greatly. As you can see here, the only way Mattie could lift his hand was he had to practically lift his body. Yet when Mattie was involved in activities, he could get absorbed in them and for just a little while he was a child again.
Quote of the day: Grief is in two parts. The first is loss. The second is the remaking of life. ~ Anne Roiphe
Today I went to see my dentist. While talking to the hygienist, I updated her on all my physical issues since she saw me six months ago. She has known me for quite some time and as I was reporting to her about all the problems I am dealing with, we both had to laugh. We laughed because it just doesn't seem possible that while trying to address one medical issue, the treatment produces many others.
What came to my mind while talking to her was "This is the house that Jack built." This is a British classic, and a nursery rhythm we read to Mattie often. I included it down below because even to this day it makes me laugh. Basically Jack builds a house, and in the house he has malt (barley). However, there is a rat that eats his malt, so a cat is added to the mix to solve that problem. But it doesn't end there, because the dog bothers the cat. So it is a cumulative tale that makes you chuckle. Yet the analogy of Jack is perfect to my medical conditions.
This is the house that Jack built.
This is the malt that lay in the house that Jack built.
This is the rat that ate the malt
That lay in the house that Jack built.
This is the cat that killed the rat
That ate the malt that lay in the house that Jack built.
This is the dog that worried the cat
That killed the rat that ate the malt
That lay in the house that Jack built.
This is the cow with the crumpled horn
That tossed the dog that worried the cat
That killed the rat that ate the malt
That lay in the house that Jack built.
So what am I talking about? Well I suffer from chronic migraines. I do not know what a headache free day looks like and I haven't for 14 years. I have tried all sorts of medications to address this issue and the medication that I have been taking for the past two years to try to prevent extreme pain caused me to develop kidney stones. Stones that I got every three months. So I had to stop that medication because I couldn't manage the headaches and the kidney stones. However, it should be noted that such side effects only happen in a small percentage of people. In the Fall I had surgery to remove a mass in my breast. The surgery went well but from it I developed costochondritis, which is inflammatory of the ribs. It is very painful and takes months to heal. I was given an anti-inflammatory medication to help speed up the healing process and alleviate pain so I could function on a daily basis. Well don't you know that I would be in the 3% of people who develop periphery neuropathy (numbness) as a side effect of this medication. So now I have the headaches, costochondritis and neuropathy in my legs and arm. If it wasn't happening to me, it would actually be hysterical! Needless to say, I opting for a medication free existence in order to have some sort of quality of life back.
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