I should hear back from my Neurosurgeon and Neuro-Oncologist today. I left a message with both. I thought more about the seizures and I think that because I’m becoming more symptomatic pretty quickly (3 focal seizures in a week), waiting until the end of May for an MRI is a little too long for my comfort level and perhaps we should do one now. This is obviously an aggressive tumor and in spite of the fact we folded in gamma knife in March and may assume this took care of growth at that time, the fact is we don’t know whether the seizures are being brought on by growth, brain swelling, damage to the motor strip from the gamma knife process (not surprising if so), etc. I think we need to do it though. With the recurrence that happened 4 months after my resection in October and “most” recurrences after the first becoming sooner and sooner in elapsed time, I want to stay totally on top of this.
I’ve been thinking over the last few days about how the so-called “economic down-turn” (which is government speak for recession) has brought some families closer together and taken us back to some core values. I know for us, it’s built on what naturally happens when fighting a brain tumor and what existed before.
Most families come together after the diagnosis and are more judicious about how, where and with whom they spend their time. I think coupling that with the economy is creating more closeness – or it creates the opportunity. More people are spending time at home – not eating out as much or shopping. I don’t think there is anyone I know who hasn’t made some type of change to their financial matters. We refinanced our home. We found a better deal on cable TV. But this tightening of the belt as it were is something that can be a positive. It’s the media that creates so much fear and hysteria about things. Yes, everyone has to be careful right now and some are in very hard times – and I pray daily about the problem but God will prevail. In the media, however, the world is going end, right? The same message was sent a few weeks ago with the swine flu – pandemic! Remember SARs? Who can forget the bird flu – the list goes on. I’m not suggesting at all that these didn’t effect anyone – they did and it was awful – just like brain tumors and other diseases they are of earthly creation. The point is the media drives fear and panic.
I find that us the most difficult issue is when I’m not feeling great – it puts a lot of pressure on Rachael and she feels the burden of the evening or weekend day upon her. Lately I’ve felt pretty good with the exception of the seizures which can put me out of condition for awhile. I think it’s hard to support each other sometimes when two people are in survival mode at certain times. We honestly struggle with this. But, on the other side of the coin (the shiny side!), I’ve been outside with my kids in our backyard playing catch with my older son. I’ve been able to play with our youngest and I’ve been spending a lot of time with Aidan at night reading books and just talking.
On a funny note, the other night Aidan needed to get out of the bath. He had his hair and shoulders so lathered up it looked like shaving cream! But nowhere else – just on his head and shoulders. Rach asked, “Aidan, why do you have so much so soap in your hair and on your shoulders?”. Aidan said “Well, the bottle over there says Head AND Shoulders so I want to make sure I do it right.” Kids can make you laugh – you just can’t do it in front of them sometimes.
Random post. Don’t forget Mother’s Day on Sunday!!
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