I know it’s been awhile since I last updated. I have so much to write and don’t know what to write about all at the same time. This last round of chemo went well. John was tired but not as tired as the round before. He will get his blood drawn this Friday and hopefully his platelets didn’t drop with this lower dose.
John went to Arizona with his brother the Sunday after his chemo ended. I figured it would be good for him to get out of the house and spend some time with his brother. He had a lot of fun. It wore him out but not as bad as he thought it would. Of course it did help when they broke down in Page, Arizona for two and a half days and had nothing to do but sit and sleep in a hotel room. They finally got a rental car left my brother in laws work truck there and came home. I was happy for him to come home but not as happy as the kids were.
Him being gone was depressing. I have never liked when he leaves but this felt different. It’s the first time he’s been gone for longer than one night since we found out about the brain cancer. It was so quiet after the kids went to bed and I found my thoughts drifting to places I didn’t want to go. Those what would I do if this was for real kind of thoughts. If he doesn’t beat this cancer or it comes back faster than we hope. If it’s two years instead of fifteen or twenty? How do I explain this to Colby whose heart was broken ever single day his dad was gone. How do I raise my children with out their father and my best friend by my side? I really try not to think thought like that. It’s so depressing but how do not think them?
There are days when I’m so scared it takes my breath away. I think that more than anything is why I haven’t written much this month. If I type it out maybe it will come true. Except that I know that’s not how it works. I know there is a plan. I know there is a purpose to all of this except knowing that still doesn’t make it easy or maybe I should say easier. The low platelets and having to lower the dose scared me. It wasn’t supposed to work that way this soon in his treatment plan.
So those are the things that have been going through my mind lately. I’m trying to focus on not being so scared. On the positives and not the negatives. I figured that I needed to write down a little of how I’ve felt this month so that when we do beat this I can look back and say to myself “See, you were scared but you got over it, grew and moved on” Or at least that’s what I hope will happen.
In other news. I was incredibly sick the week John was gone. I actually considered taking some of Colby’s hydrocodone I had left over from his stomach surgery because my throat hurt so bad. I couldn’t talk for two days because my voice was gone. I finally started taking some Olive Leaf Extract and Grapefruit Seed Extract nasal spray after my antibiotics didn’t help. Sometimes natural is the way to go! Except when it isn’t. I gave Colby the Olive Leaf Extract and some Grapefruit Seed Extract Oil through his feeding tube in the hopes that he wouldn’t get it from me. I still can’t do his shaky vest on him to help him get the mucus out of his chest. It makes him throw up blood ever since the new feeding tube was placed. Anyway, it worked in that he didn’t get sick but it didn’t totally detox all of his Botox shots out of him so now he is super spastic again. I feel horrible because his muscles are so tight again and it hurts. I didn’t even think about it affecting his shot sites because it’s never happened before. That GSE is some potent germ fighting stuff. Anyway, I called and scheduled him for new shots but that won’t happen until November. I will have to up his Baclofen dose until then to help him be comfortable so there goes his head and trunk control. I wish he could talk to me and tell me what hurts so I can help him more. I’ll just keep trying to walk that fine line with him in keeping him comfortable/giving him functional muscle control the best I can until then.
Riley is loving preschool. She didn’t even look back her first day. She comes home so excited about what she’s learned. Jahnna is still doing well with her home school. She is completely off her antidepressant. Still on a sleeping pill at night and a mood stabilizer for the bi-polar but at least one of her meds is gone. I have noticed a difference in her self esteem since coming off of it though. She’s back to saying she’s stupid and can’t do anything when she makes a small mistake. I try and boost her self esteem every way I can because she is a really intelligent girl. Eight is way to young to have to deal with a poor self image.
So, that’s been our September. I’m hoping October is better. MRI is scheduled for Oct 7th so here’s hoping and praying it’s another clean scan!