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?
From Oligo II to GBM in a month?
- By KatieBCaring · September 10, 2012 at 12:20 pm · 2 replies
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- By KatieBCaring
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- September 15, 2012 at 11:18 am
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Hi Jessica,
Sorry I wasn't online yesterday. The other night was a rough one around here. My husband had several focal seizures in a row, with just a few minutes' break between them. And, as you probably know, getting a neuro to return your calls in the evening is not the easiest task. We were just about ready to head to the ER when the doctor called and upped his Keppra dosage. An hour later, the seizures stopped... and his understandably bad mood began.
Until now, he's been in a state of semi-denial about all of this. Still works 9+ hour days. Still mows the lawn, fixes stuff around the house, stays up late watching movies on Netflix, etc. And, although I love that he's hopeful, to some extent I also wish he'd rest up, because 6 weeks of daily chemo & radiation start on Monday and he's going to need his strength to get through them. Then again, maybe he needs these last few days of feeling "normal" before all of that starts. I suppose, for now, I really do need to leave it up to him.
As far as our friend's GBM IV went... he was a nice, thoughtful and easy-going guy (much like my husband) until they couldn't control the tumor even with Avastin. In the span of two weeks he became a hate-spewing racist who would go on diatribes about politics with anyone and everyone, and if they didn't agree with his views (and not many would), he'd become verbally abusive. His doctor was kind enough to let his wife know that phase would only last a couple of weeks before he reached the point where he'd be sleeping most of the time and, when not asleep, would still be "not quite there" mentally. So she wisely sent her kids to stay with her parents for those two weeks, rather than let their father's tumor destroy all of their fond memories of him.
Sure enough, about 17 days later, he began sleeping most of the time. When he was awake, he'd talk about old memories with her, and would thank her for caring for him, etc. He knew he was going, I think, and he made a point to say 'goodbye' in his way to everyone he knew. His wife brought the kids back home to live during those final days, and they helped care for their father. Within another week or so, he was seldom awake at all, and their whole family took turns sitting with him and holding his hand.
He'd have moments of lucidity when he'd talk to them, and told each of their kids how wonderful they were, and how proud he was of them. But he also let them know that he realized how he'd behaved there for a while, and it embarrassed him, but there was nothing he could do to control it. He asked their forgiveness, and told them that when they thought of their father, please don't think of him as that man. It was a very healing time for them all, I think.
I don't know if your husband will have moments like that. No one knows. But I will wish with all of my might that he does, not just for your children but for you, so you'll always have soft memories of him before this horrible condition takes him away completely.
- Kate
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K, I find this story fascinating for so many reasons.
First, the workaholic husband. Oh. My. Goodness. If it were me, I'd spend 80% of my time worrying about my kids and 20% of my time crying. But all he wants to do, my husband, is continue working as though to do otherwise would show the world he's unwell. Or his identity is so tied up in work, this is all that matters. Whatever. Upsetting to me, and yesterday my pediatrician went so far as to say: "It must be so hard for those children to know that their father is on borrowed time, and see him choose to spend it working instead of with them." Ouch.
Second, your son. How to shield/comfort/help a child understand what is happening, when it changes so quickly? Your son will no doubt follow your lead, and you sound like a supremely kind and compassionate person, so what a great lead to follow! A friend of mine who is both a cancer survivor herself and a Mother recently reminded me that a crisis like this is a defining moment for a child, and we can't shield them from the pain of a parent's chronic illness. Our job is to love and support them, make time for them, and give them the tools — physical, emotional, perceptual — to understand for themselves, on their own timetable, along their own life path. Hard, but I think true.
Finally, those inlaws. Always tricky. Is there one person among them who "gets" it, who you can deputize to run interference on your behalf? Because that sounds wickedly hard, and I am so hearing you on this. But that is a long distance to drive for treatment and you deserve support: here in CT we have a posse of retired older cancer survivors who drive people to radiation appointments: it is a great system and I wonder if you can avail yourself of something similar?
Wish I lived closer to buy you a martini! Now I want to hear about the despicable GMBIV friend who died an ogre ... !