My husband was diagnosed with Oligo II in his left insular area in July after a focal seizure. (He'd been having them for a while but hadn't told me.) Surgery was 7/20 and they believed they got 90% of it. The neuro-oncologist recommended Temodar 5 days every 28, and holding off on radiation.
At the time, we were comfortable with that treatment, which was to begin following my husband's 1-month post-op MRI. Besides, everyone kept telling us how Oligo II's are benign, and that there was every reason to be hopeful.
I don't know that he's any more depressed than he'd been in the years leading up to his diagnosis -- he'd been slowly withdrawing over the years, not wanting to do anything together, not taking care of himself, just basically acting like my roommate instead of my spouse.
Well, Oligo II's are notoriously slow-growing, and given this one's location in his left temporal lobe, it was clearly affecting his emotions and personality. Looking back we both realize what I'd thought were marital difficulties were, in fact, probably due to his growing tumor. After his surgery, he turned back into the man I'd married, and we actually felt LUCKY that we were going through this.
Then, he began having focal seizures again 10 days ago. They're more frequent and longer than they'd been prior to the surgery. He's still working (and is such a workaholic that to insist otherwise would be cruel), so we were anxious to get the chemo started and hopefully reduce the tumor to the point where the seizures would stop. He was scheduled to start his chemo this week.
Last Friday, the neuro called us in and said that what had been a small area of enhancement on his left basal ganglia in the pre-op MRI, which was about pea-sized on the MRI taken the day after surgery, is now the size of a grape and likely to be anaplastic astrocytoma or GBM. Biopsy is too risky at this point, so they're going to start him on daily radiation (5 days per week for 6 weeks) and daily Temodar throughout that time, then reduce the Temodar to the 5/28 and continue it for a year. And all of that hopefulness? Yeah, it's pretty much gone.
The good news: at this point, he is STILL back to being the man I married. The bad (besides a far more grim prognosis): he is TERRIFIED that he'll change, not just back to the distant, unsupportive man that he used to be, but into a bitter, mean-spirited ogre thanks to his tumor. (We have a friend who died of GBM IV and, by the time he passed away, had turned into a despicable person.)
I told him that, no matter what happens, I'll never look at him as any different than he is now: a loving, kind, wonderful husband and fantastic father. The rest? Well, if there are changes ahead, we know they are not HIS fault, and I won't let the future diminish what I know to be true about him.
But our son, who is 12, might not have that skill, and we're both concerned how this is going to affect him. For now, we've told him about the change in his father's treatments, but not the change in the prognosis. We figure there's still time to discuss that when -- and if -- it needs to be discussed.
Still, how do I prepare a child for the fact that his dad MAY change, that he's not to take it personally, that it will not be his fault when treatment makes dad too tired/sick to play, that if dad gets snappy (or worse) it's because he's sick? How do you tell a kid that this next year of treatment is going to be hard, but it might get better... when, in fact, it might not?
Oh, and then there's his family: they are being wonderful with offers to come help, since getting my husband to his daily radiation treatments will require a 2-hour round-trip drive. Only... they are not easy people to have visit. I'm an introvert, and I need quiet and solitude to rebuild my emotional strength to deal with all of this. They are NOT quiet people, and having them here means there's no place for me to regroup or even disappear to when needed. Plus, it means having to manage their emotions and constantly address their questions/concerns when I need to be processing my own. Am I wrong to not want them to come at this point?