Minstrels of Mischief

Ok, she's had a ton of tests done and, drum roll please, we don't yet know anything! More of that to follow.

Hello. Courtney's sister here. I just got back from the hospital where I spent the night with Courtney (& Jason, for most of it). She was sent to the E.R. around midnight with a fever and severe headache. Her fever was getting quite high and not responding to Tylenol as much as they'd like to see. They are obviously worried about a possible brain infection, but checking for any other kind of infection as well as flu or virus.

Overnight her temperature got pretty high - above 104 for a while - and stayed around 103 until this morning. She was up most of the night having X-rays, CT scans, blood tests, etc, so had only slept about 2 hours when the Physician's Assistant came in around 7am to assess her situation. Her temperature had finally gone down to about 100 by then, possibly with the help of medication and a little sleep, so she was more comfortable fever-wise, but her head was still in a lot of pain. They are trying a variety of pain medications to manage it.

They are treating her with both antibiotics and antivirals to cover their bases (the flu test results take 48 hours - too long to know whether that's what the problem is. Other tests aren't showing an infection, but that doesn't rule it out). The last report is that the surgeon is concerned about meningitis, a swelling of the fluid surrounding the brain, and will be ordering a spinal tap to ease the pressure.

Courtney is pretty uncomfortable but is very aware and talking and even managed to eat french toast this morning (after some anti-nausea medication).

I have added some items to Courtney's Care Calendar (see links on the top right), and we'll continue to update it as we learn what will happen in the next few days and whether she'll need to stay in the hospital a bit or not. Thank you so much for all or your concern, help, and prayers. It really helps to know there are so many people out there thinking of our family.

It took me a few days to put together my last, lengthy blog update. My energy and mental clarity is unpredictable from day to day. My eyesight is still having troubles. Because of these things I wanted to suggest that you “CC” my husband Jason in any emails you send me. Then he could read them to me if I can’t read them myself. Please understand if I don’t respond personally to your comments or email. Sometimes I am just not able. Know that I LOVE hearing from you! It really helps to lift my spirits!

Love,
Courtney

jasonatack@hotmail.com

Friday, November 27, 2009

My dear, sweet family and friends,

I have been keeping a journal on my computer as I try to sort through all of this craziness. Many of you want to know how I am doing and, honestly, I don’t know what to say. This is very frustrating to me. It just seems too long, confusing, and complicated to express and I know I don’t even understand completely. But I love you and want to try to help you understand. I’ve tried to do so below. Sorry for the length. I am a very open person and think I would just feel more comfortable if I could try to help you understand what is going on. I hope this helps. Thank you so much for your love and support though all of this. It means more to me than words can express!

~Courtney Atack


So…Let’s start at the beginning….

The news of the brain tumor was alarming to say the least and yes, I was scared. I knew that it may be cancer and that it may eventually kill me and that was hard to swallow but I guess I figured, “it’s a tumor. This is 2009. Medicine is really advanced. They’ll go in. Take it out. We’ll see if it is cancer we are dealing with and go from there.”
We met with the surgeon who showed us pictures of the MRI and explained things to us. There were two things going on. Jason explains it below…
Courtney has two things going on. First, she has a tumor about 2 cm in diameter in her right temporal lobe. It is operable, and the surgeon thinks he'll be able to remove the whole mass. We won't know if it's benign or malignant until after it is examined under a microscope by a pathologist. The second thing is that a large part of her right brain has an abnormal appearance that could be swelling caused by a crowding of the brain tissue by the tumor, but could also be a more diffuse type of tumor that would likely be a low grade malignancy. We're hoping to have surgery this month to find out for sure.

Because of her seizures, (and now knowing that there is in fact a tumor in the right temporal lobe) Courtney is unable to drive, cook over our gas stove, take a bath, etc. for at least the next few months.
Then we waited. Surgery was scheduled shortly after that. I didn’t have much time to prepare or process. I think I was a bit frantic trying to get some things ready but I didn’t know what to get ready or how to go about it because I had no idea what things would be like after surgery.
From the most recent appointment with the neurosurgeon I was under the impression that the area they were going into may affect 3 things mentally:
1. my lt. eye peripheral vision
2. my short term memory
3. and music.

That was it. Period. And it was the last one actually that scared me the most. That one had me pretty freaked out but I just didn’t have much time to deal with it. I just had to cross my fingers, say a prayer and hope.

Oh ya. There WAS one more thing. This was surgery after all and a pretty major one at that so it would affect my physical strength for about 6 weeks. I would be tired and need to rest and get help with kids so I could heal from surgery.
I was never really afraid of “death”, except knowing that eventually and “if” they found it to be cancerous, I knew that was a risk. Like I said, things moved really fast and even if I wanted to, I just didn’t have much time to fuss over the details of all of the “what if’s?”. I did recognize that this, in the end, was probably a good thing. Waiting can be so hard. I didn’t like it much and I would have rather had a bit more time but I figured, “we’ve got to get this done at some point anyway. We’d better just do it and find out what we are dealing with here and go from there. Besides, the doctor’s schedule is booked up, he is going out of town for a while, we’d better grab the appointment being offered to us.”
Actually the 2 days before surgery I felt great! I felt totally at peace with everything. I finally understood the true meaning of “being one with the Lords will”. And not just saying it but really feeling it and being ok with it. I knew that there were a bunch of crazy, hard, and extreme outcomes. Many that I didn’t want. But somehow I was given an eternal perspective and just felt like I could see that no matter WHAT happened, it was going to be ok. And I mean WHATEVER happened. It was a pretty strange feeling actually. Anyway, I was totally at peace, which, you know, is not at all like me in a situation like this and the ONLY explanation is the power of ALL of the prayers and fasting done on my behalf. There is no other way I could’ve felt that way, in that current situation, on my own! I have always strongly believed in the power of prayer but I have never felt it work in my own life so strongly. It was truly incredible! A Miracle! A HUGE blessing! Thank you to all of you that gave me that gift!!!

Next, I went in for surgery.

I felt so normal at first. I thought it was just “a flesh wound” =). I knew the doctor had said that there may be those 3 side affects but they seemed to be fine. The things I was not expecting was the vertigo issues, and my vision problems. These were probably a result of the fact that the surgery ended up being a lot bigger and the tumor was a lot bigger than what we had thought. In the hospital they did various neurological tests to check all of my basic functions like moving different parts of my body, touching my nose with my finger, counting the number of fingers being held up and so on. Apparently there was some talk of sending me to rehab but in the end they decided that I had all the basic functions well enough and they sent me home.

Now I did have to come home with a walker but I fairly quickly graduated from it and was on my own feet. I was still pretty drugged up and out of it for a while.

But then as the days went on, the pain subsided a bit, my eye healed up somewhat and I was able to open it. What I saw was alarming. I kept blinking and rubbing my eyes trying to fix it. Nothing seemed to work. Every time I opened my eyes it seemed as though I was looking through a fishbowl with textured glass. Everything was blurry, as if I was missing a bunch of the pixels to the picture and my depth perception was off somehow. That mixed with the vertigo was extremely disorienting!

The vertigo is not gone but is much better. The vision is about the same and I am just hoping that it is because of the swelling and will get better with time. I really hope it is not permanent. It is super annoying!

So what the heck is going on right now?!?:

I’ll try to describe this next part as quickly as I can.

As my activity picked up and I started doing more and interacting more with people and the world I started noticing something. I felt like me but I felt different. Definitely different! What was going on?!? There were little basic things that I would try to do and have problems with. Like putting syrup on pancakes (I’ll tell you that story later) or doing buttons or figuring out which pills to take. I started recognizing that my reasoning power got knocked down to that of maybe a 10 year old at times or a 3 year old at times. For example, I was eating some fruit salad my mom put on a plate for me and I just couldn’t for the life of me spear that grape and get it onto my fork. I was getting so frustrated because I knew that I wasn’t doing something right. I just couldn’t figure out what it was. And worse of all, I knew and could recognize that this was something that I knew how to do, had done a million times in the past (like those darn buttons) but now something in my head wasn’t quite connecting and for the life of me I couldn’t figure it out what wasn’t connecting. I just knew that it wasn’t working like it used to. I also started noticing that emotionally I was about 1 ½ years old with mass separation anxiety. When things around me changed, rooms, people. I would freak out. But I also knew that this was really not normal behavior or feelings for a 33 year old woman. It just didn’t make sense! These are just a couple of examples of what kept happening until it became clear to me that something was off. Something was not the same! I could laugh about it at times, in the moment but the nightmarish thing about it all was…again, I recognized it…saw it for what it was. I felt like I was mad! I thought, “Oh my gosh! Oh no! oh no! I’m brain damaged! I’m just not all there! Where did I go? I have my 33 year old body, all of my memories that made me who I am today. I feel like I am me … and yet I am not me. Something has changed. A lot of things are different and they shouldn’t be different. It’s like waking up and screaming as you look down and realize that your both legs and an arm have been chopped off. You can still feel them and remember what they looked like and felt like but they are gone. Another way I think of it is, my days feel a lot like a fish that is flailing around on the ground thinking, “What happened?!? Why am I not swimming?!? Where did the water go?!? Why can’t I breathe?!?”

*This is the most horrible awful, terrible, horrific thing I have ever gone through! I can’t even begin to explain it. Well, I tried. But I know it’s long and may be confusing and incomplete.

I just didn’t know that I would come out of surgery brain damaged. Not in this way. I thought my risks were just one of those 3 things mentioned earlier. How did I go into this so blind?

I don’t know how or why but it took me about 2 weeks to realize that I was, in fact, brain damaged. That, by way, has been one of the hardest things for me in all of this. I don’t know why it has been so hard to accept. I mean, they took a whole bunch of my brain out! You just can’t do that without side effects. Yes, I may be able to retrain my brain in many ways. And I absolutely plan on it. But meanwhile this realization and all of its implications have me pretty paralyzed.

The brain is a tricky, delicate, sensitive thing. This is all very confusing for me. I almost wish I was a vegetable but didn’t know it. Instead, there is definitely some damage there and I can see it, recognize it. I just can’t seem to fix it. Not yet anyway. It is a very uncomfortable, disconcerting situation to be in. It’s all kind of like an out of body experience in some ways. I feel often feel like there are 2 of me and the old me is watching the post surgery me try to continue on with life. It is very strange. I keep having to remind myself that I am not mad, but just had brain surgery and have lots of swelling along with lots of missing brain tissue. It is going to be a while before things are back to normal. Actually, I don’t know how normal things will get but I am going to try my darndest to get there. Pray for me. It really, really helps. Here’s to a long, strange, crazy, journey through the wilderness. Stay by my side. It helps to know you are there.

Love,
Courtney

Sorry I haven't posted an update for a while. The little time I've had for myself has been used for sleeping and eating. Before telling you about Courtney, I need to recognize the help we've received from friends and family in shuttling our children, bringing us meals, taking care of pets, all the messages to us, and so on. We are thankful for all of you!

The "Roller Coaster" that my dad refers to below hasn't stopped. Jason is doing an amazing job of trying to fill a lot of roles right now but it obviously has left him exhausted. My recovery is slow, frustrating, and really confusing for me as I try to piece together what has happened to me and how to go from here. My energy and eye sight still make really little basic things very difficult. For now I am going to post this email written by my Dad back on 11/17/09. I realize that it is a bit out of sync but thought I'd post it anyway. He did a nice job of giving a few details of what was going on at that time.

11/17/09
ROLLER Coaster

I visited with Courtney yesterday afternoon. She had just completed the journey from her bed to the bathroom and back with Jason's help and was completely wiped out. In good spirits but very weak. The night before I had visited with her and she talked a lot and laughed and we had a really good visit. After the "step backwards" that Jason wrote about, she was considerably weakened. Pain does that.
Courtney still has areas of numbness on her head near her eyes, down her right arm and two smallest fingers, portions of her right leg and toes. The pain in her eye is subsiding but she is still very sensitive to light and so the lights are dimmed in her room. She suffers chronic vertigo when she is upright. There is a chance this will not go away for some time.
Yesterday she asked me to sing to her, so I picked up Jason's guitar (all the comforts of home) and played and sang 3 or 4 songs. It made her smile. We know Courtney is there because she sang along with me some of the time, harmonizing softly.
Logan, Caden and Ashlynn are settling in to routines at our house. Kaaren is exhausted some of the time, but you know what to expect from her - lots of creativite activities and fun. Ashlynn is being a doll - pretty and perky and happy, even at meal times. Logan and Caden playing with toys, setting up my train set that my mother gave me for Christmas a couple of years ago, and bringing homework assignments, picture day instructions, taking the bus to and from our house, etc. The hard times are when Jason comes by and they remember and miss Jason and their Mom. Of course, they don't really have a concept yet of the degree of incapacity that Courtney is going through during her recovery so we have much adjustment to go through in the next few weeks. I sing the kids to sleep each night. We had home evening last night with a song and prayer and game and treat. The game was dancing to my piano music as I change styles and stop suddenly and start again. They had fun. I am really liking having them around, snuggling with them at reading time.
I haven't seen Jocelyn since the weekend before Courtney's surgery but understand Tracy is managing ok with her. She is in good hands.
Jason is not getting good sleep and is carrying a huge emotional and physical load. He needs a rest and probably won't get one for a few days.

Courtney here. I have soo much I want to say but very little energy and problems with my eyesight and, of course, just basic functioning. So please forgive my typos. This is my first attempt to use my computer and it is slow and inaccurate. I just want you all to know how much I love you and how much your prayers and words of encouragement mean to me! Jason has been reading the comments and some of my emails. Thankyou! Thankyou! This has been the longest week and a half of my life! I have so much to share and say being cooped up in a dark 1/2 conscious state of delirium and pain and nothing much but my own head to keep me company. I have had some serious lows on this crazy roller coaster and want to thankyou again for your comforting words. When I was completely lost and felt I had no inner strength left I would replay your words that Jason read to me in my head. You have all given me so much. You have been my light. My beacon. I can't thank you enough. I am realizing now that this will be a WAY longer and harder road than I ever realized. I hope you will stay by my side though this. I wish I could do it on my own but I know I can't. Thankyou again for all you have done for me. I will continue to write more as I find the energy.

Not much to report today. Kids are happy to be back in their own beds, as am I. Courtney may have overdone it a little coming home Wednesday as she's pretty wiped out right now. However, her spirits seem to be up. It's good for her to be around more family and to be in a more comfortable place than the hospital. Another sis-in-law, Kadra, has gone over with her own newborn to help Courtney even more. There's lots of love flowing around. Thanks again for all the thoughts and prayers. There is power in it and Courtney loves hearing the encouraging words. At times things get pretty frustrating and depressing as she wonders how many of the symptoms she's experiencing will be permanent and what will pass as she heals. There are still a lot of unknowns.

Sorry it's been a little while. I've been more then whelmed; overwhelmed in fact! Last night Courtney was experiencing some pretty heavy vertigo. She got news from a neurologist that it might never completely go away. That really has her feeling depressed. More so than anything else so far, or maybe it's just another in a long list of things she wasn't expecting and all together they are overwhelming her. Either way, every little kind word from friends and family means a lot to her right now. Thank you all for the emails and comments! She had to spend another night in the hospital. Our neighbor, John was gone, and she was able to get some decent rest.

Courtney had been having a relatively good day today. She actually stayed awake all day, had visits from her mom and dad and was actually able to visit a little. This evening she was looking forward to a dinner of french toast, and while she was waiting for it decided to take the nurse up on the request to take an assisted walk around the floor. She did pretty well, ran into one corner and had to be caught from falling a couple of times, but that's not to shabby at this point. A few minutes after getting back in bed she was hit with a sudden excruciating headache and terrible nausea. When it didn't pass, they gave her some morphine and an anti-nausea, but it still didn't help. They were worried that something had gone wrong, so they rushed her down for a CAT scan. Everything in the scan looks good, but she's really hurting bad, so they've put her back on the heavy doses of the heavy drugs and we may get to do a replay of the last couple of days.

Not much change since yesterday. She's chatting a little more, but we still sit in the dark as we chat because her eyes are so sensitive. Still no feeling her her last 2 fingers on her right hand.

Sorry I didn't update sooner. Courtney had a really difficult night last night, but it wasn't because of her head. Her eye was irritated somehow and has been excruciating to her. We spent the night putting in eye drops and holding cold compress on it. It's a little better now, but still the worst part of recovery so far. She has total numbness in her right ring finger and pinky. We thought at first it was a pinched ulnar nerve from the way she was positioned, but it still hasn't gone away. She'll do another MRI to see if there's any swelling in her neck and pinching a nerve there. She had an MRI at about 5:00am this morning to see how things are looking post-op. It's pretty amazing how much tissue was removed. There's a pretty sizable void there, and we're hopeful not too much healthy tissue was removed.

I've been in with Courtney for a couple of hours now. She's pretty drugged up, but is very happy that she can remember me, her kids, and her songs. She's hurting, but "do-able" according to her. She only lost a thin line of hair, but it's shaped like a horseshoe and is covered with staples right now. She has another MRI in the morning to see how things are responding. She didn't think it was very funny when I told her that the doctor had installed a chip to give her a memory upgrade while he was in there, but she has smiled a few other times at my lame humor. Just need to get better from here.

We got to the hospital this morning about 5:30am. Right now it's about 6:30pm and she just got out of surgery. The doctor says that the entire area in question was tumor, and appeared to be a glioma which is a low grade brain cancer. In his estimation, he was able to remove about 97% of it. I haven't seen her yet, but he says that she is awake and there doesn't seem to be any problems with hearing, speech, or vision. She's going to be in the ICU for the next few days, depending on how the next 24 hours go. We won't know for sure exactly what it is until the pathology reports, but the initial hunch is that we'll be deciding in a week or two what additional treatment will be required. All in all, I'm feeling like this is a pretty positive result, but she's not out of the woods till it's all gone. So now we begin the long road to recovery. Thanks to everyone for all the prayers, messages, and general support. It has been an amazing strength! I'll keep updates flowing as I learn more.

Surgery will be this Wed. Courtney goes in @ 5:30am. We will post updates as soon as we know more.

We met with a neurosurgeon today and the news is mostly good, at least relative to some of the fears we've been having. Courtney has two things going on. First, she has a tumor about 2 cm in diameter in her right temporal lobe. It is operable, and the surgeon thinks he'll be able to remove the whole mass. We won't know if it's benign or malignant until after it is examined under a microscope by a pathologist. The second thing is that a large part of her right brain has an abnormal appearance that could be swelling caused by a crowding of the brain tissue by the tumor, but could also be a more diffuse type of tumor that would likely be a low grade malignancy. We're hoping to have surgery this month to find out for sure.

Because of her seizures, Courtney is unable to drive, cook over our gas stove, take a bath, etc. for at least the next few months. After surgery, she'll be in ICU for a few days, then on a recovery floor for a few more. The up-side of surgery is that she doesn't have to shave her whole head. (You should have seen her smile at that news!!!) She'll only have to shave a part over and behind her right ear. I'm telling her she can do a comb-over easily. The down-side is that due to the location of the tumor, it's possible she could loose some of her ability or interest in music. (Those of you who know her also know that music is her life as well as her profession.)

Thanks to everyone for the sincere concern and well wishes. The good that you have done for us is beyond description. Please continue to remember her in your prayers!