Tuesday was another MRI for John. It looked exactly the same as his one in December which is a good thing. The doctor said it looked “perfect” in December. John will start his 9th round of chemo on Sunday night. It doesn’t seem like it’s really been nine months since he started the chemo process. It’s always nerve racking on the drive down for the MRI. I’m nervous but don’t say anything because I don’t want to worry John because I know he’s worried and doesn’t want to worry me. Then we are both nervous until we go up and see the doctor. He runs through the whole neurological analysis before he pulls up the scan and flips through it. The analysis takes like five minutes but it always seems so long on scan days.
No matter what the scan looks like it always trips me out to see the black spot where the tumor was. It’s filled in with cerebral fluid but it just this weird reminder that they had to take out part of his brain. I don’t really think about it much until I see it. Then I give him a hard time all the way home. If he forgets a word or takes a few seconds to complete his thought process I ask him if its disappeared into the black hole in his head! I’m so mean! He laughs about it though and I suppose it’s a good thing to be able to laugh at everything we’ve been through.
John’s a little nervous to stop the chemo after the twelfth round. The chances of a tumor coming back while he’s on the chemo are pretty slim so it’s kind of reassuring to be on it. That is such a bizarre feeling after dreading the start of chemo. It becomes a kind of safety net against the progression of the cancer when it comes to this kind of cancer. The doctor said it actually takes a few years for all the chemo to work itself out and that generally that’s a good thing with oligo’s. It means that it’s slowed down the process and that it will increase the time in between re-occurrence. The longer he goes between tumors means the longer his prognosis will be.
I should see if I can figure out how to get a picture of his MRI off the disc so I can post it. If you want to see the black hole leave me a comment and let me know what you think. I find MRI’s fascinating but some might not. I really should have been a doctor.
You’d think I’d fallen off the face of the earth or something. It’s been crazy busy around here as usual. I’ve been hoping that things would settle down and that I’d get over my writers block. I’m not sure if it’s writers block or I just don’t feel like I have anything to say right now. I was talking with my friend from high school last week and she said her days feel like the movie Ground Hogs Day. Everything just feels the same no matter what you do. I suppose that’s where I’m at in life. Even the medical stuff feels like it’s just a repetition of some other day. I’ve really got to find a way to shake things up in a good way.
So Christmas came and went. So did New Years. Tomorrow is Valentine’s Day and I still feel like it’s May of last year. I’m just kind of stuck there mentally.
Christmas was a good one this year. Very low key and relaxed. My parents came out and stayed at my sister’s house the week after. It was nice to see them and spend some time together. John has finished his eighth round of chemotherapy. It’s gone by really fast. Four more to go and he should be done. Hopefully for a very, very long time. He will have another MRI next week and we’re hoping and praying it still looks good.
Colby had his Deep Brain Stimulator adjusted last week. We’d turned it down a lot and I didn’t make the connection between his insane spasticity over the last 5 months and the lower setting. I feel bad that it took me that long to get him in to his doctor. Two days after he had it adjusted he was back to his normal levels since putting in the DBS. It’s nice to know that it’s helping him so much and that we made the right decision to have it put in. The sad thing is the battery is already down to 75% on it. I know that when it’s on all the time for dystonia the battery wears out much faster than in Parkinson’s patients but I was still surprised to see that it went down that far already. It’s been in for a year and a half though so it’s to be expected. Once it gets down to around 25% I think they replace it which will mean a surgery but that shouldn’t be for another 3 years or so. I’m excited that next week he gets to bring an electric wheelchair home for a trial. We’re borrowing it to see how he does with it. It would be nice if he could become proficient with one so that he feels like he is more in control of things than he is now. I’m sure it will mean I need to stock up on some spackle for the walls though.
Jahnna is learning her multiplication tables. She’s almost got them all down and I’m pretty impressed with how fast she learned then. We are switching some of her medications around so it’s been a bit of an emotional week or two but I’m optimistic that the new one is going to help her even more.
Riley loves preschool. She went to her Valentine’s day party today with pink hair. I sprayed it with the left over Halloween hair paint for her. She’s pretty funny. She had to wear a dress today for the party. I asked her how she was going to do tumbling in a dress and she replied with an eye roll and a very sarcastic “I’ll wear leggings or tights mom”. It’s good that my four year old is so much smarter than I am.
I think that about covers it as far as an update goes for the last couple of months. I’d say I’m going to post more but I don’t want to make promises I can’t keep. I keep stressing about not updating and making it more of a chore than an outlet. If you are reading this from Google Friend Connect and want to continue to follow the chaos of our life make sure you sign up for email updates because I’m sure you’ve heard it from every other blogger you read that they are doing away with GFC for WordPress next month.
