and maybe this past week, actually.
Honey is not doing all that well.
If you didn’t know better, you wouldn’t think too much of it.
He is struggling to understand things. Simple things. Like why I want to buy a toilet and pay a friend to install it rather than pay $175 for the commode and an additional $350 for the service call with a licensed plumber. Or that when I say that we had lunch only 2 1/2 hours ago it doesn’t mean I am getting up to cook dinner at that moment.
He is tired. Weary.
HIs patience is short. I have been having to run interference between all the men-folk in my world. Reminding the kids that he doesn’t mean to be cranky, he’s just tired. He tries to stay awake the entire day when G & C are over and it is too much for him. He wants to squeeze every minute of quality time with his children as possible. He wants to build a life time of memories yesterday. Ya’know?
He is forgetting things. Short term kinda stuff. I have to remind him of things like the day or date, our schedule for the day/week or whether or not we have already eaten or not.
He is having panic attacks if I leave him for any significant amount of time (like for grocery shopping) or if he can’t get in touch with me right away. Did I mention the day that I “abandoned” him at the doctor’s office? I ran to do an errand while he got labs done. He got out super early and didn’t have his phone. Not a big deal,normally. However, this time the nurse at the clinic was having her own bad day and was short with Honey when he asked if he could call me from the office phone. He couldn’t remember my number and couldn’t get ahold of me and couldn’t think to the next step of asking the receptionist to help him. (Granted, she was a prize-winning bitch, but still…)
He knows the carbo isn’t working the way it should this time. It just makes sense that Blob would learn a way around the chemo – he is, after all, a brain tumor, Remember when I mentioned Honey’s broken tooth? (I told you before that there would be a test on this – here it is.) Honey broke his first molar while he was still on oral chemo. I was concerned b/c he can’t get it fixed or pulled while on chemo. I thought he would be cutting (or at least bothering) his tongue on the stump. Not so. I thought it would really hurt… but he was none the worse. Then, when he began taking IV chemo – his schedule was supposed to go something like this:
week one: avastin and carbo
week three: just avastin
week five: avastin and carbo
week seven: avastin only (see the pattern?)
Well, things don’t often work out the way we expect they will, rather they work out the way they work out.
Honey’s platelet count was so long in reaching its nadir and returning to a level appropriate to deliver another round of carbo that he has only had three doses since November. This is way less than the number he should have received given our initial schedule…
(Tooth I remember). About two or three weeks after getting carbo, his tooth really started hurting. It continued to hurt until just after his November MRI when the pain abated rather quickly. Shortly (like days) after the tooth pain went away, the seizures started again and we got pulled back down town for another MRI (this was the one that showed huge regrowth in that short amount of time). Chemo (carbo) dosage was dropped by 25% to try to get the poison half-life and platelet nadir to synch up – thus controlling Blob.
2nd carbo/avastin around the 3rd week in December. Again, Honey’s tooth began to hurt almost as soon as they unplugged his IV. His face got swollen and it HURT. Again, they treated him with Tylenol and warm wishes. His pain lasted about a week and then went away.
By now, I am convinced that there is a connection between getting carboplatin and his tooth pain. I am near to positive that when Blob shrinks, he releases pressure on that part of the brain that controls dull pain – so he feels the broken tooth pain. When the pain goes away, I “know” that Blob is growing again.
We had another regularly scheduled MRI two weeks ago on Monday; meeting with oncologist on Tuesday. Blob looked just about the same as he did in the MRI taken six weeks prior. Oncologist thinks this means Blob has stabilized. I say he is full of shit. I think Blob has already shrunken and regrown. The doctors are looking at one moment in time – I am with him near to every minute of every day.
After this most recent administration of carbo/avastin (when his dosage was dropped another 10% in another attempt to synch things up), Honey’s tooth didn’t hurt. Not at all. But what I “know” isn’t going to make everything better. I want him in for another MRI today so another new treatment can be introduced. I may be being extreme or emotional about this – working on feelings as opposed to facts – but that is what I have to work with.
I am scared. I don’t know how I am doing. I know that although I am going stir crazy, I am afraid to leave him alone because I am worried that he will forget where I’ve gone or think that he has been abandoned again. It breaks my heart to see him this way. He is a poet. His work, Fractured Soul has been published (thanks Uncle Hank) and now he can’t problem solve…
His best time of the week is when G & C are here, yet he doesn’t have the energy to do more with them than cuddle up on the couch and watch movies or play computer games. On the plus side, C has started to demonstrate more of an emotional attachment to his dad. (That’s another story for another day when it isn’t 2:36 AM.)
Luv yer guts