Yeah, there’s a reason you hear this one a lot. It’s kind of nice that it’s caught on. 
Huh?!? Email me EC (or PM me), this is news to me.
ETA: BTW, the graphic at the bottom of the XCKD cartoon is excellent.
Another update for those who are interested: pathology came back quickly. It’s Grade III astrocytoma, which is not great. The team is trying to figure out whether the resources where she’s living (Florida) are up to the task of the radiation and chemo she needs, or whether she should stay at Hopkins. I’m selfishly hoping they can go home to Orlando because I’m not sure I can handle two months of this. That makes me feel so awful.
It’s ok. Put on your brave, cheerful face for your real life friends if you need to, but you don’t have to pretend with us.
On the other hand, it won’t be two months of this. Radiation and chemo are entirely different from surgery. Change is likely to be much more incremental, albeit with potential for other issues (My mom had chemo for ovarian cancer. Dad described the way she was as being much like when she had morning sickness. Strong opinions on what she would and would not eat, often changed at the last minute. )
At a practical level, if you do need to survive two months of this, you do it the same way you run a marathon or any other endurance event. One step at a time. One day at a time. Keep your routine to the extent possible, and take care of yourself. You are an important person.
Oh Jesus, I am so sorry.
My admittedly limited understanding is that brain tumors don’t function as normal brain tissue, so in a sense that chunk of her frontal lobe is already “gone”. That’s not to say there won’t be effects - the seizure risk has been mentioned, the need for healing and time, possible memory/processing effects - but since in a sense that piece of tissue isn’t contributing now, its absence may not be as significant as you might think.
That, and my other admittedly limited bit of understanding is that a person can survive loosing one side of the frontal lobe with surprisingly little change, it’s when you lose it on both sides you get devastating effects (the old frontal lobotomy got both sides in a very crude manner). Even the brain has some redundancy. There are exceptions, of course, and of course such a serious illness can cause changes in a person even without brain surgery, but I’d expect there will be little noticeable difference, if any, in her personality. At least, that’s what I’m hoping for her.
Antigen, I extend all my sympathy to you.
An Internet friend of mine had a similar thing about ten years back. Her first indication about it was when she went to an ATM and couldn’t remember her PIN. Not long after she just collapsed and the diagnosis came back about brain tumour. She explained to me about the “satellites” that the tumour extended and the difficulty of dealing with them. She was a tough fighter and I knew she would go down swinging. When she got placed in palliative care it seemed all over, but she actually came back and emerged from there.
Eventually it claimed her though. It was an experience I would not care to go through again.
What Eureka said. And, fuck cancer.
So sorry, that’s f’d -up. I have a benign tumor and it just sucks. She’s in the street fight for her life. It sounds like she’s the type to step up and fight.
Thanks so, so much for the support.
She came home Friday and it’s so hard to believe she was just in the ICU a few days ago. She’s her normal self, just a little tired - it seems more like jet lag than recovery from major surgery.
We’re going out for sushi tonight to cheer her up a little, and so she can wear her new wig out in public. She’s doing great, physically… emotionally she’s mostly ok but she has lapses of fear, anger, and frustration. I’m having a hard time walking the tightrope between “I’m still me, stop treating me like I’m dying” and “I’m NOT ok, I have fucking brain cancer”. She and her sister are here until the end of this week to see the surgeon for a follow-up before she can head home to Orlando for a week or two while they’re researching where to go for the next steps of the treatment so they can hit this thing quickly and viciously. If they decide to stay with Hopkins I’ll need to do some hard thinking to decide if my husband and I can handle having her (and a sister or two, sometimes) here for two months. I would feel like an asshole if I said I couldn’t do it, but to have people in my house for that long, stressed out and scared, is a lot to handle. Especially once she starts getting sicker from the chemo and radiation. I feel horrible for even considering saying no, because I love her so much, but I just don’t know if I’m strong enough to deal with it from that close, for so long.
Better to say “no, I can’t handle it” before such arrangements are made, so other arrangements can be made, than to attempt it and suddenly need to make changes mid-way through her treatment.
Medical centers have people who help patients with those sorts of issues. If she can find housing where she need not worry about having to make a change of location during treatment then you can be the supportive friends who visit and help her out frequently without draining your own emotional resources.
When you’re close to someone with cancer it’s hard not to think about their illness all the time. I’m sure her treatments and things are going to come up in conversation, so when you’re not talking about that or about practical things like living arrangements, try to talk about regular stuff. That’s not always easy and sometimes the sheer irony of talking about mundane things like where to go to dinner while a loved one might be dying just makes you want to stand up and scream… but at the same time, someone does need to make dinner plans. I don’t know if you have any downtime these days, but what are you doing for entertainment and distractions? Keeping a steady supply of movies might help a bit.
It’s a very hard decision to make, and it may hurt if you say no. But it’s important to be honest about your own feelings and capabilities. Don’t ignore yourself. And I’m sorry it’s the astrocytoma. I know that’s not what you were hoping for.
I just stopped in to say that my Wife’s only son, (my stepson), who is 37 has a frontoparietal astrocytoma. He has had the resection, radiation therapy and chemo.
The good news is that he was diagnosed over 10 years ago. He still lives on his own. He takes Dilantin to control seizures. There is hope, even with these kinds of tumors.
We will be thinking about you and your awesome friend.
I got a message from a well-wisher here, asking for an update on the story. I meant to come back to the thread but Irene wiped out power to my area for a whole week and it’s been a mess.
She’s just started her radiation and chemotherapy and as far as I know she’s doing ok for now. She was told that the nausea and fatigue only start a few weeks into the treatment, so she’s still feeling “normal”.
She decided to stay with Johns Hopkins for her treatment, but she’s staying with a boyfriend in Alexandria VA and trying to fly home to her sisters on weekends. I think her new guy works for an airline, so she’s getting some help with that. I haven’t seen her yet since she started radiation, and I can’t tell if she’s going to go into hiding once she starts to look like a cancer patient, or if she’ll put in her wig and heels and tell me we’re going for sushi tonight. I’m trying not to take it personally that I’ve only gotten updates through her sisters and her Facebook page for the last two weeks, because she’s been busy dealing with work and insurance and fundraising - I wish I could talk directly to her but I know she’s got a lot going on.
She’s become an anti-cancer warrior online, which is taking up some of her energy, too. Her new blog is called One-Eighty and she’s decided to record her story in writing to share with the world. She started at the beginning and is trying to catch up with the present, so keep in mind that for now you’ll be reading about what happened last month. Check it out, spread it around. She’s got links on her blog to online fundraising to help cover her expenses, and a Facebook page - I am not soliciting donations but asking you please share the blog with people and maybe someone’s got a billionaire friend-of-a-friend who will be touched and make a huge donation to cancer research.
Glad you gave us the link to her blog. She definitely is a gifted writer and wrote very eloquently about the whole situation. It takes strength to be able to just relive all those details.
And, yeah, I doubt it means anything personally that she hasn’t been in touch. She may just be overwhelmed with everything going on or feeling worn out from the appointments. If I were you, I’d probably just send her a short note to wish her well and let her know you’ll be around when she’s ready to talk again.
Your friend is awesome, her blog is awesome, and you are awesome. Never hesitate for a moment to let us all know how things are going. Fuck cancer.