November 14th, 2006 by Atomictumor
Sorry about the 12+ hours since update. Slept in, (accidentally on purpose), dropped the kids off, did the things.
First, I’ll talk of BJ. While I haven’t seen the elusive neurologist, Dr. Mas was telling me that the seizure activity was probably keeping her unconscious, and that its not affecting limbs (although there have been occasions where us or the nurses will see twitches, very lightly). She has a bleed in the frontal lobe, not a new one, but one they’re growing concerned about. It is in the part of the noggin that affects emotion. I’m hoping maybe she won’t be mean to me anymore.
Something else he said is that he’s never seen a patient on so much blood pressure medication that lived. She’s been off all now since the weekend, and is doing peachy.
Body’s doing better, except for her fingers. Those poor little tips of her right hand seem to be shrinking. I think I managed a reprieve, for now, on her toes, but surgery will be happening in the next comple of days on the fingers, as I described yesterday.
Her white blood cells count back down to 29, best its been in a week. She’s there. Just waiting on her head.
And in the morning, with the sunshine, I can do that. Shame its winter, and the nights are longer, eh?
Theres no sense stressing over things I can’t control. While I was bitching about her doctors, I continue to have the same sense of gratitude toward them for caring so much. They GENUINELY DO care.
There have been a bunch of stories I’ve been too tired or busy to tell.
—
Wow. I started writing this, and then I logged into work, and then I got distracted with how cool it is to be working from home, and then I forgot.
I’m a total loser
Stories… lessee.
Theres the elderly fellow that I’ve been seeing around. He was probably there when I first started coming in, with a smile, asking how my wife was. I’d say something hopeful, and head out.
Yesterday, he came in the quiet room while we were talking, and said that they’re talking about unplugging his wife. I never asked why he was there. They’d been married for decades, she survived an illness she shouldn’t have survived 40 years ago. Mom, being the woman she is, talked to him for a good while, and I wasn’t sure at all what to say. I gave him a hug, and thanked him for his kindness during his pain.
He gave me a prayer book today. Friendly old guy.
Or about the preschool. They went in and paid our utility bill for the rest of the year. Completely blew me away. I was speechless.
Or Dad, and my uncle, who are entering me into the world of the laptop’d, to help with my working from home (or from any place that has wifi).
Or BJ’s school friends, who came to see her today.
Its good stuff, man.
Anyway, I’m going to post this. I haven’t checked the tumor all day. I hate that I’m getting busy, because you guys out there have truely kept me at peace during this time.
—
Little girl, my little lost beauty, I love you so much. I’ll see you soon, sweetheart.
November 14th, 2006 at 12:29 pm
It all sounds hopeful. I’ve been sitting in class waiting for this post, and I’m so happy to hear that you’re doing okay. Your night time posts are quite a bit more depressing…
I love you, and will be here if you ever need anything. I’m still constantly praying for you and BJ. I love coming to this site and reading all the posts made by random people who don’t know you but love you and are praying for you. They’re filled with hope.
November 14th, 2006 at 12:41 pm
Thanks for the update AT. It’s heartwarming to hear all the great stories.
November 14th, 2006 at 12:42 pm
What jen said except I know how the nights can be - the phrase “Cruel Moon” comes to mind. in the darkness just remember the daylight is just a few hours away. It sounds like there’s some improvement. Hang in there my new friend.
November 14th, 2006 at 12:42 pm
i bet for you this is theraputic …. did i spell that right? … probably the most tried and true “therapy” around is journaling (aka: “blogging”). keep us posted as much as you need to and never hesitate to let us see the other interesting tidbits rolling around in your head. she will be back with you soon enough and we will all do a jig and kiss our computer screens!
November 14th, 2006 at 12:48 pm
Praying today for continued hope and random acts of kindness.
I know that you probably haven’t considered it, but maybe you could put a Paypal link for donations for those of us out here that would like to give a little something to you and your family?
“You can choose a ready guide in some celestial voice.
If you choose not to decide, you still have made a choice.
You can choose from phantom fears and kindness that can kill;
I will choose a path that’s clear-
I will choose Free Will.”
Not sure why-but Rush wisdom came to me after reading this post.
Keep the faith.
November 14th, 2006 at 1:02 pm
Bleeds are bad, but the front section is the part with possibly the most redundancy of the entire brain. The neurologist needs an ass-kicking.
Did you try tapping GAC on the forehead and calling her name yet?
November 14th, 2006 at 1:04 pm
So now we just need the seizures to get undercontrol and for her brain to heal so she can wake up and rejoin her family! The brain is an amazing thing. Did anyone see yesterday’s Oprah? There was a young woman on yesterday who had been caught in the blast of a bomb over in the Middle East. The doctors had to removed part of her skull to work on her brain. No one thought she would make it except for the doctor who wouldn’t give up on her. They put her in a medically induced coma so her brain could heal. She did have to relearn how to walk, read and some other things, but she is now healthy and fully recovered. Miracles can happen and BJ will come through this. She’s held on this long and has blown doctors away, still being here. She’s a fighter and she’s come too far to turn back now. Take care of yourself and your family - she needs you.
November 14th, 2006 at 1:10 pm
Prayed for you at Mass today - all of us!! Picture the faces of 18 grey-haired nuns all looking concerned and sympathetic. And me, of course, proud to be your Aunt Nun.
November 14th, 2006 at 1:11 pm
Good thoughts and prayers coming to you and your family. Love the preschool!
November 14th, 2006 at 1:17 pm
I think Christina C’s suggestion of a PayPal account is great! I found the ‘tumor from Jonathan Hickman’s blog, which I found from Katie’s blog, and I have been following the updates for a couple of weeks. Be sure to know that ALL of use out here are wishing you the best and hoping for a speedy recovery for GAC!
November 14th, 2006 at 1:19 pm
Great post, AT. Hopeful news indeed.
November 14th, 2006 at 1:39 pm
This is AT’s job, and I know he’s said these words a thousand times, but thank you all. Thank you all for being here and for your prayers and good wishes and all that karma stuff. Thank you preschool for being amazingly generous with your financial gifts. Thank you old man for being generous with your sorrow (taking time to ask about ATs). Thanks strangers for checking this blog (probably more than I do!!!) and for keeping this little family in your hearts.
Wow. Maybe this world isn’t as lost as it seems sometimes???
Hold in there GAC. And AT, maybe if you’d play something not hippy she would be quiker to pop right up. I know I want to sleep when I hear that junk….
November 14th, 2006 at 1:40 pm
Guys, I have a really, really, really hard time accepting gifts, even when I need them.
So, to get around that, a few days ago Jen hacked an account for herself and offered to use the blueberry farm as an address.
Paypal is evil (see what happened with the Katrina and Tsunami charity accounts), so I wouldn’t use them with a 10 foot pole, or something.
Or, an equally meaningful gift would be to give to a charity of your choice. There are people hurting more than we are out there, who don’t blog about it.
November 14th, 2006 at 1:55 pm
AT - Just wanted to pass on that my thoughts are with you and your families. I second the comments that you need to keep your self healthy and strong with sleep, appropriate nutrition, relaxation, etc. And let others do for you…see above on keeping yourself healthy…as much as it is not in your nature.
Just keep in mind that you will pay it forward with caring for others; so it’s not really about you, but the nature of most humans to want to help ease the pains of others in which ever way we can. For those who are not able to help you in person, sending a contribution to help with financial needs is one of the ways we can feel we are doing something in a situation where we are powerless to “fix it” for you.
From what you have written about BJ (and what I know of being a wife myself) she would not want you to become ill (physically or mentally) while caring for her, though she would do the same for you. Great stuff is love! Positive thoughts are flowing your way from Virginia.
November 14th, 2006 at 2:22 pm
“you’d play something not hippy”
hippie
November 14th, 2006 at 2:31 pm
Every day is one more to be thankful for. Still praying and sending good thoughts. Wish I could do more.
November 14th, 2006 at 2:54 pm
I was a Katrina victim - and believe me, when you DO need the help, don’t be ashamed to take it. That was the problem with Katrina. Everyone knew somebody else worse off than they were. We passed on a LOT of what we were sent to people worse off than us, and we had to beg people to take it. But truthfully, none of us would have made it without it. It was a horrible, horrible time.
We got a big box from a lot of strangers in Oak Ridge, including much-needed diapers for my son. And nursing clothes for me - how cool is that!
Anyway, my point is this - if you need help with the gap, people WANT to do it. If you get more than you need, pass it on. That’s what it is all about. One hand to another, everyone supporting each other when they need it. That’s the way the world is SUPPOSED to work.
November 14th, 2006 at 2:59 pm
Sometimes when things are falling down around you, you just hold on tight and wait. Hopefully it is of some comfort to you that you are not waiting alone. Hoping you find strength wherever you can.
Grammar Snob
November 14th, 2006 at 3:27 pm
AT, great to read the update. It sounds positive overall. Still praying about the fingers, toes and for complete recovery. There is so much good going on, a just a bit negative (the finger tips), that we really believe that this can and should still be seen as a miracle.
Have not been posting as much as only need to tell you that we are still here, still reading, still praising God for all that has happened, and praying to God for more great news soon.
Stay strong and know we are hearing praying just a few miles Northeast in Knoxville.
November 14th, 2006 at 3:38 pm
Just stopping by - thinking of you - good to see you post this afternoon.
November 14th, 2006 at 5:05 pm
I’ve been reading your blog for about a year now and am stunned to hear of your wife’s condition. You, your little ones, your wife, and your family are in my prayers. My mother has multiple sclerosis and Dr. Lynch was her doctor, we soon switched since he was not aggressive enough to try to get her disease under control. Stay strong and stand strong with the doctors to get all the information you are entitled to. My thoughts and prayers are with you guys!
November 14th, 2006 at 8:07 pm
Hey edsone, good to see you. Yeah, its a bit of a shock. Hmm… I’d be interested in hearing more of your opinion of Lynch. He hasn’t stuck me as the most impressive doc in the world.
November 15th, 2006 at 1:17 am
I only started reading ur blog today.And I can’t get you and ur family otta my head.I’m so sorry.Ur doing yourself a favor by writing this all out.Ur also doing yourself a favor by listening to music.Always been my savor too.Ur kids sound amazing.Ur wife sounds like a fighter.And you are stonger than you know.You all are in my prayers.I know a little boy who has cancer.So maybe some folks wouldn’t mind praying for him too.He’s 3.He’s a fighter too.
November 15th, 2006 at 10:30 am
wonderful stories. You know people care, but you don’t always “see” it. I’m happy you’re all getting good support. We’re still praying from the outer reaches of blogdom…
November 15th, 2006 at 11:10 am
My mom would see Dr. Lynch only every six months. All he would do is just tell her that there wasn’t much he could do for her. I soon grew impatient as I learned more about the disease and wasn’t understanding why there weren’t any treatments or thereapy she could do. I took her to her family practice and saw the nurse practicioner and told her my concerns for my mothers health and she said that she believed that we would be happier with a neurologist who was more aggressive. She referred her to Dr. Sybil Wray in Knoxville and has gotten my mother in a aggressive course of different treatments and physical therapy and sees her routinely and the office staff there is spectacular! I don’t really care for Dr. Lynch. He didn’t seem to want to do anything to reverse any of the effects that the MS was having and knowing what I know now, maybe some of the dead spots on her brain could have been reversed if she was only treated sooner, but he just chose to wait and not do anything. That is my opinion of him. Let me know if you have any other questions about him. I don’t know him personally, but I didn’t like how non chalant he was about my mom’s disease. With your wife being in Oak Ridge, I don’t think there is a big selection of neurologists to choose from. Hang in there AT!!