My funny little smile

There is not much new to report here. I have been back at work for 5 weeks, and life has been pretty full speed ahead - which is a good thing!

I am getting used to not hearing in my right ear. It is easier in some situations than I expected, and more difficult in others. I am learning to be more assertive about where I sit so I am able to hear people better. Large groups can be overwhelming.

My facial paralysis still persists. The photo above is about all I get for a smile. I try not to be discouraged, and remind myself that it has only been 11 weeks and to be patient!

I am happy to be able to enjoy my family, friends and "normal" day-to-day activities!

Couldn't have done it without them

My Mom and Red left their home on June 12th, and with the exception of a weekend to visit family in Wisconsin have been here since. We honestly could not have gotten through this time without them. While I was in the hospital, they took care of Delaney and Kinsey. Although Mark and I constantly thought about our girls, we never worried about them. We knew without question that they were lovingly being cared for, and probably being spoiled along the way.

Once I was home, the care continued to helping take care of me. Gentle prodding to stay active, making sure I was OK and taking me to the eye doctor.

Mom and Red basically ran our household. Mom doing almost all the laundry, cooking, shopping, ferrying of the girls to and from school and activities. For those of you who know Red, he is not known for his ability to sit idle. He has found countless projects at our house that needed doing. From golf cart repair to yard work, home maintenance projects and leaky faucets, I am amazed at what he has done. To see both of them with Delaney and Kinsey has been a treat, and I think they have gotten to know both of them in a unique and special way.

I don't even know how to express my gratitude. Giving me time to heal and get stronger was what I needed, and they made sure I had it. They are leaving today. I know they would not have spent this time any where else - I feel lucky every day that they have been willing and able to spend the time here. Fortunate beyond measure that we could all be here together and with such compatibility. I will miss them, and I know Delaney and Kinsey will miss them too. I hope that The Farm has been well cared for and they don't have too much work when they get home.

Thanks for being here. Thanks for loving me and my family. Thank you for everything you have done!

What a difference 4 weeks makes

Four weeks ago, I was in the midst of 12 hour surgery. Not something I want to do again EVER! I am happy to report that I think I have turned a corner and am feeling better and stronger every day. I was taking Tylenol with Codeine fairly regularly, but haven't had anything stronger than ibuprofen since last Wednesday! No headaches to speak of, and the awful pressure bandage on my head is gone for good (and has been for a week or so).

Mark and I were back in Iowa City yesterday for a check-up. Unfortunately, the visit started with an audiogram. I didn't quite understand why this was being done, since there was no question I had lost the hearing in my right ear. They put me in a sound proof room, and piped in various sounds for 30 minutes through things stuck in my ears, and guess what? I couldn't hear anything in my right ear! I knew that was the case, but having someone confirm it, and explain the test results was like being kicked in the shins repeatedly. It just sucked. After some more waiting, when we saw one of my doctors, the first thing she did was apologize for the audiogram. She said it never should have been scheduled in the first place, and was sorry that I had to do it.

My doctors looked at my incision, looked inside my ear, asked about how I was feeling, and have given me the go ahead to get back to living life without restrictions - including back to work on Monday! We talked about my facial nerve, and how it is still "asleep." When they removed the tumor, the facial nerve was stretched very, very, very thin over the tumor. Now that the tumor is gone, it needs time to readjust and just start firing again - I am sure there are much more technical explanations for this, I just don't know them! Dr. Gantz expressed his opinion that it will happen it just needs time (weeks, months, up to a year??). When I told him I hoped he was right his response was "I'm not wrong very often." I'm banking on that. In the meantime, my smile is very one-side, and my eye still won't blink, so taking care of my eye is a priority. We go back to see the docs in three months for a follow-up.

The highlight of my day yesterday was picking up Kinsey. Since coming home from the hospital, I have not been able to do that. I have certainly had lots of time where she has been handed to me, and good cuddles, but being able to stand-up and hold her was a great feeling! It also goes a long way to making me feel I can take care of my family.

I have started driving. I don't think I am ready for any road trips, but I feel comfortable getting around town.

Hearing on one side is taking a bit of getting used to. If I am walking with someone, or sitting down next to someone, I have to remember to have them on my left side if I want any chance of having a conversation. We went out to dinner last night (a first for me in four weeks!), and I did pretty well in the restaurant. I probably asked quite a few times for things to be repeated, but overall pretty good I think. What I miss the most is known as sound localization - the ability to know where a sound is coming from. If you are able to hear with both ears, sound comes in one ear, and also travels around your head and goes in the other ear fractions of a second later. Your brain is able to process that noise and determine where the sound is coming from. Since I only take in sound from one side, I have no clue if something is to my right, left, upstairs, downstairs or in the next room. It is very odd, and will take adjusting to.

I recently finished reading a book. In the final pages, one of the main characters is summing up her philosophy on living life. It goes like:

To simply try and be good and courageous and bold and to make a difference. Not change the world exactly, but the bit around you. Go out there with your passion and your electric typewriter and work hard at ... something. Change lives through art maybe. Cherish your friends, stay true to your principles, live passionately and fully and well. Experience new things. Love and be loved, if you ever get the chance.

Other than the electric typewriter, sounds pretty good to me! The book is One Day by David Nicholls. A good read, I very much enjoyed!

Yeah, But My Wife Rocks More!

I just read the latest blog entry, and wow, what an awesome wife I have! Ok, so it took me two days to finally read what she wrote, but hey, things have been a bit crazy lately. For those of you who are not aware, we announced last week that Wells Fargo Financial - the part of the company I work for, is shutting down, so I will be actively seeking other opportunities in the next few months, hopefully within Wells Fargo. What can I say, when it rains, it pours (hopefully cabernet)!

But let me get back to the issue at hand - Kathleen is the one who continues to amaze me. Each day is different, but she continues to face them with bravery, optimism, and a positive attitude. Lately she has experienced some headaches, and at other times, she is her normal self, laughing, joking with me, and smiling her "half smile" which we are hopeful will return to a full smile soon. The good days seem to be more frequent than the bad days. Her steroid perscription is tapering down, and we are told this will lead to more restful nights of sleep. We are also hoping the swelling and adema will subside so she can drop the pressure bandage. Other than that, not too much to report on the medical side. Now for the really brave part - Kathleen has agreed to let me post a couple pictures as long as no one makes pirate jokes, so here you go. . .

I couldn't resist posting one of the girls as well!

We continue to be blessed with well wishes, prayers, friends stopping by to say "hi", flowers, cookies, fruit bouquets, and a whole parade of dinners. The kindness and support from everyone has been wonderful! Thank You!!!! When this is all over, we are going to throw the biggest bash ever to hit Glen Oaks and you are all invited. We'll see how much damage we can do to the wine cellar in one weekend (I think the current record is about 32 bottles), toast to good health, and celebrate life. ---Mark

My Husband Rocks

At the end of May Mark and I celebrated our 10th wedding anniversary. I recalled at the time how much I enjoyed being able to call him my husband once we were married. That feeling has seriously intensified in these last couple weeks. I am beyond proud, grateful, and incredibly lucky that Mark is my Husband. To say the time since I was diagnosed with a benign brain tumor has been filled with a bit of stress, pressure, and just a few things out of the ordinary might be a bit of an understatement.

From wading through treatment options, sharing the news, pretty much putting life on hold for a few weeks, he has done it all without question, and usually with a good dose of humor. His analytical approach to looking at things often kept my mind from wandering in millions of what if scenarios that would not have done any good! Then came the day of surgery and recovery in the hospital. As terrifying as it was for me, they were long days for Mark also. In the hospital, he was my advocate, and often voiced my concerns before I could. He made sure I ate, walked, brushed my teeth ... all things I didn't always want to do. At one point, he even changed the sheets on the bed when the nursing assistant wasn't being quick enough (seriously, an hour should have been enough time).

Once I was released from the hospital, convalescence care continued at home. Helping me shower, wash my hair, change the bandage on my head, he did it all without any complaint. When we had the stitches taken out, the doctor commented that he had done a better job wrapping my head than some of the interns!

Mark, I love you and am so very thankful for everything you do! I could not ask for a more caring and supportive partner through all of this.

And did I mention a major home remodeling project this weekend, too? We have often been frustrated with our deck - it is two levels, making each area just small enough to be limiting. So Red came up with a plan to raise the deck using jacks, and Saturday saw the execution of the plan! Mark and Red make a pretty good team! I feel like our deck is a giant dance floor, just waiting for a party under the stars!

A quick progress report on me... since getting the stitches out last Thursday, there has been a decent amount of fluid around the incision. To keep the swelling down, Mark has still been wrapping my head up in a pressure bandage. Let me tell you, this is really not the style I was hoping for! It was off during the day today, but "Dr. Mark" wrapped it back up tonight. The eye doctor continues to be happy with my eye and the protective measures in place. I had a good day today ... a bit of a stiff neck, but no headache to speak of, and a good amount of activity. I also didn't take much pain medication during the day... maybe a good sign.

The Stitches Are Gone!

We made the trip to Iowa City yesterday, and they took the stitches out. I'm thrilled more than anything to be able to wash my own hair, and not have my head wrapped up in a bandage. This morning I was able to dry my hair, and I look almost normal - if you can get past the eye that doesn't blink, and the lop-sided smile. At least I feel a little less like Frankenstein!

Adventures At The ER

Yesterday was an interesting day! Recovery has been going well at home, until yesterday afternoon when I was hit with a horrible headache. A visit to our local ER, a CT scan, some bloodwork, and consulting with my doctors at the University of Iowa, sent us to Iowa City in the middle of the night as a precaution. All tests looked good (no signs of menegitus, inter-cranial-bleeding, cerebrospinal fluid leak, etc.), and they released me. Mark continues to be my rock, helping navigate the medical world at all hours of the day or night! I slept a lot today, and am almost feeling back to what I was a day or two ago.

Tomorrow I go back to the ophthalmologist - hopefully more good news that my cornea is in good shape and no swelling of the optic nerve.

I am very much looking forward to Thursday. We go back to Iowa City for a check and to have stitches removed. This also means that the ace bandage that has been a permanent fixture on my head can come off! I can't wait for the hair on my head to get somewhat back to normal, and to be able to wash it be myself!

We interrupt this medical drama...

Life does go on around the Turner house, especially the lives of little girls! Delaney celebrated a milestone last week by losing her first tooth! She claims the other bottom front tooth is ready to go!

In exchange for the tooth of a five-year-old, the Tooth Fairy left $3 - a little extra for the first one. The money has been put in Delaney's piggy-bank, and saved for something special, we just aren't sure what.

I found the Tooth Fairy pillow over at Etsy a while back, and it was the perfect thing for a tooth exchange!

It is a rainy 4th of July here, but honestly, just happy to be alive!

One Day At A Time

Another day down! More good news from the eye doc. My cornea looks good, and the inter-cranial swelling seems to be less - all signs of healing! I will go back to see them on Wednesday.

Because of having my eyes dilated again today and being sunny and windy here, I did laps inside the house. Kind of boring, and not the best, but better than nothing. A couple good power naps, too.

My mom says I have a twinkle back in my eye, and looking better and better every day. We took a few photos of the incision this morning - don't think I am ready to post that image just yet! Delaney was curious about my scar and stitches, so she looked at it this morning, and took it in stride - kind of amazing if you ask me!

A Patient's Perspective

First, all the support has been amazing! I can't begin to let everyone know how much your comments, cards, well wishes, and prayers have meant to me! I know I should have expected nothing less from Mark, but his communication, care, and encouragement has been awesome! Hugs and smiles from our daughters having been the best does of medicine ever.

Mark tells me I look way better than the picture from a couple days ago. Less swelling and less of a black eye. Still a lop-sided face, though. I'll try to get a photo posted soon.

My facial nerve function continues to be the symptom that needs the most attention. I can't blink my right eye, and have no movement on that of my face.

The ophthalmologist has been my new best friend here is Des Moines. I went back today and he was very happy to report that the area where my cornea had thinned by about 50% had completely filled back in! I am continuing to wear a band-aid contact lens (about 2 cm in size) to protect my eye, and lubricate it with lots of gel. Tomorrow they will dilate my eyes again and check for swelling and other things. Hopefully the treatments in place will work until my facial nerve regains some function.

In addition to my eyelid not closing, it is very hard to control the right side of my face. It feels like someone is playing with puppet strings in my head, especially when I try to talk a lot. So talking on the phone or reading a story to Delaney takes a lot of energy.

I'm trying to be active around the house, taking short walks and just take care of myself. Of course, balance with rest!

I still have an ACE bandage wrapped around my head, and will until we go back to Iowa City next Thursday to have the stitches removed. I did take a peak at my scar, stitches and bit of shaved head this morning - not nearly has bad as I expected! I feel like my ear should look like a piece of cauliflower all swollen, but it actually looks pretty normal.

~ Kathleen

Wednesday update - good to be home. Healing is going ok. Mark has been running around tracking down medical supplies. He helped me take a shower today and washed my hair so I feel much better as a result. He continues to play nurse and put on my pressure bandage this morning. Still some headaches but the pain meds seem to control it.

We are at the opthologist and they discovered some issues with my right eye, all of which are side effects of the surgery and not being able to blink my eye. The one that most concerns them right now is that my cornea is thinning as a result of my eye not closing all the way and even with the artificial tears, it is not enough to protect it. So they are fitting me with a special contact lense to protect the eye and keep it lubricated. They are also recommending more agressive moisture management, so we may end up going to a moisture chamber (think syran wrap over my eye) full time. I am told to expect daily visits to the opthamologist for the next few days.

We are scheduled back in Iowa City next week to get stitches removed and let Dr. Gantz check to ensure everything is healing as it is supposed to.

Adios Iowa City, West Des Moines Here We Come!

We just got our walking papers (with a very long list of instructions!), so we are out of here! Can't wait to get back home to see the girls smiling faces, and to provide a little relief for Bonita and Red (a.k.a. Grams and "Uncle Buck"). One quick stop at the drug store for supplies and we will be on the road. Thanks to everyone for the continued love and support, it has helped keep spirits high throughout this ordeal. Let's continue to pray for a speedy recovery and that the healing process goes well.

Heading Home Soon!

We just met with the doctors and are going to get released this morning! Kathleen had a night of marginal sleep, but is excited to get home and see the girls. Kathleen thought everyone would enjoy a glimpse of her face. She can't move half of it, but believe it or not, this is better than it was a couple days ago when it was really swollen. The doctors tell us it may take a while for the facial nerve to "wake up", but we are hopeful this will come in a month or so. In the meantime, Kathleen is looking forward to a shower and the comforts of home.

The large bandage on the side of her head is a pressure bandage that keeps fluid from building up at the incision site. This morning there was a bit of fluid in the area, so we will need to continue with the pressure bandage for another few days. They would also like us to return to Iowa City a week from Thursday so they can inspect the incision before they take the stitches out.

Kathleen is doing great on our walks. She is steady on her feet and does not need to use me for balance at all. We will send a note when we leave the hospital. ---Mark

The Results Are In

We just got the MRI results. Apparently during surgery they close off one of the bigger veins as part of the procedure. When surgeries last as long as this did, blood clotting is a typical side effect. They call this a thrombosis and we are told it is NOT dangerous, it just needs to work its way out of her system. It is also the likely reason she is having headaches. The MRI did not show anything else that concerned them, so it looks like we are clear to head home tomorrow (yeah, I know you've heard that before, and I probably just jinxed us, but keep thinking good thoughts!). The plan is to treat the thrombosis with oral steroid pills, which Kathleen will take for the next two weeks.

Looks like I will continue to play nurse when we are back home. My list of things to do is getting longer by the day, but hopefully after 2 weeks, things will get a little more normal. The stitches can be taken out in about a week, and she will continue with the moisture chamber at night over her right eye until the facial nerve returns. Other than that, it's watch for swelling around the site, keep clean bandages over the stitches, and keep going with the walks several times a day.

Wish us luck, we hope to see the girls tomorrow.

---Mark

Partial Results

Blood work came back good. White count was in the normal range. Should hear about MRI late afternoon.

No Results Yet

We are still waiting for results of the test. Apparently Dr. Gantz is in surgery so we may not hear until later this afternoon. In the mean time, Kathleen and I just made a bet. The eye drops we have to put in each hour come in 5 packs of these little plastic droppers . One dropper is used per application. I said the 5-pack would end up costing us $9 by the time all the hospital charges, taxes, and other stuff were added. She took the under. Anyone care to get in on the bet?

---Mark

Monday Mid-Morning Update

Still no results from the MRI or blood tests this morning (see 7:47am blog entry for what is going on -we are not coming home today). Ate breakfast, took a short walk, brushed teeth. We are in waiting mode and Kathleen is sleeping at the moment. I'll let everyone know when I hear results of the tests.
---Mark

Thank you Nicole and the DSP Friends!

As many of you know, Kathleen is really into digital scrapbooking. On Thursday, when I was trying to keep myself occupied not thinking about the surgery, an idea hit me - create a scrap for Kathleen to help her focus on moving forward. Very shortly thereafter, I realized how inept I was at photoshop. Thankfully, several friends of Kathleen's from Digital Scrapbook Place (DSP) were following the blog, so I reached out for help. I wrote the words, and in just 3 short days, Nicole and the DSP crew created a kit of various elements and this wonderful scrap. . .

I think you'll agree with me that this turned out amazingly well. The journaling reads. . . I am Kathleen. I am Brave, I am Tough, I am Strong. I am an awesome Mom, a great Wife, and a wonderful Daughter. There may be a few physical changes, but I will not let what happened change who I am, how I feel, or my attitudes towards life, friends and family. Because I am Kathleen. I Laugh, I Live, I Love, and nothing can ever take that away from me.

Experiencing a setback today. Kathleen had a night of little sleep. She woke up with a sore neck, which can be a sign of spinal fluid leak, so they are being cautious. Back onto the IV so they can get some steroids in her to control any swelling. They are doing an MRI to get a look at things inside to ensure everything is ok. They drew blood to check her white blood count so they can determine if there is any infection. I'll report back when we know more, but let's just hope this turns out to be a non event. They pushed departure back to Tuesday.

Every time I look over the blog, I find typos, but certainly I should have caught "Sunday Eveing". . . it was in 18 point font! Oh well, one chink in the armor of a rookie blogger is not bad. ;-) We just went for our final walk of the night. They are putting a "moisture chamber" over Kathleen's right eye to protect it. Now that the swelling is going down, her right eye does not close all the way, and we have to put drops in it every hour to keep it moist. Apart from that, the healing is going very well. We are both looking forward to a good night's sleep and some good news tomorrow. Signing off for the night. . . Mark

Sunday Eveing

Just got back from our longest walk yet. Kthleen is doing great. She spent most of the afternoon in bed with a headache, but she is feeling better now. Lasagna, grapes, apple pie, and ice cream for dinner, along with plenty of water and sprite. She is eating well and getting plenty of fluids. I tried to offer her wine, but she pleasantly declined. Maybe tomorrow?

We received instructions to see an opthomologist when we return to Des Moines to ensure we keep her right eye safe and healthy since it does not quite close all the way. I consulted my friend Dr. Marcos Lopez, and as usual, he was extremely helpful in explainig what we were dealing with, why we needed to do certain things, and how to keep her eye safe while the facial nerve heals.

We still anticipate a release from the hospital tomorrow, and should be back in Des Moines Monday afternoon. Thanks again to everyone for the comments on the blog, we love reading through them and hearing from all of you.

---Mark

Sunday Mid-Day Update

We just had a good long walk and ordered lunch. Kathleen is resting until lunch arrives, so I thought a quick blog update was in order. No offense to everyone, but we just got the best blog message to date and I will copy it here in for those of you having trouble viewing comments. . .

Dear Mommy and Daddy,
I love you a lot. I hope mommy gets better tomorrow so you can come home tomorrow. I'll give mommy a great big hug and you too daddy. You're the best, so I am sending this message to you because I love you a lot. Love, Delaney

Things are progressing nicely. Kathleen is relatively steady on her feet. The walks take a bit out of her, but they are what we need to get her strong and out of here, so we are shooting for 6 good walks today and have already completed 3. It is a bit hard for Kathleen to eat with no muscles working on the right side of her face, but she has a good apetite (pancakes, grapes, a banana, and juice for breakfast), so we are hoping her strength will come back quickly.

---Mark

Sunday Morning

Sorry for the delayed post, it has been a busy morning here. I arrived at 7am. Kathleen was sleeping soundly. When she woke up, we had a quick sponge bath, went for a walk, then the whirlwind of doctors, nurses and others started streaming in. Dr. Woodson said Kathleen is making great progress. The facial nerve has taken a rest for a while (could be a month), so the right side of her face isn't working too well and droops a bit, but the swelling is down today and when they inspected the incision site, it looked good. She still has the pressure bandage over the would, but there are no signs of spinal fluid leak, which is a wonderful thing.

Now for the really good news. . . these are pictures of the IV after it was taken out! Yeah!!! She is free and clear of the teather, and walks will be a lot easier from now on. When I asked Kathleen what she wanted to say to all of you, she said, "Tell them you are the best nurse-maid ever." I am convinced she would say that to anyone sitting in this chair, and I can't take any credit because she is the world's best, and easiest patient.

We expect to have a day of walks, food, and rest, and are being told that we could get discharged as early as tomorrow if everything continues to go well.

---Mark

Today was a good day. Kathleen completed all the walks and other tasks. She is on the road to recovery and current estimate is for a Monday or Tuesday release from the hospital provided all continues to go well. She is very tired, so I am leaving her to rest and heading back to the hotel. Thanks again for all the positive thoughts and great posts on the blog. Keep the comments coming, she loves to hear them. Signing off for the night. . . Mark

Saturday Evening Update

Just completed walk #5 of 6! They take a lot out of Kathleen, but she is doing great! I don't want to jinx it, but we are declaring victory in the battle of Kathleen vs. nausea. Team nausea was a no show, so it looks like one more step on the road to recovery is complete. Kathleen ate 1/2 a grilled cheese sandwich, some chicken noodle soup, and most of a banana for dinner. It is good to see her appetite coming back and know this will help her regain strength. I don't think she's up for the spicy asian stir fry yet, but maybe we can convince her to try a sandwich tomorrow.

She said, "Maybe I will have the guts to look at my face tomorrow", but I think she should wait until her black eye goes away and some of the swelling subsides. (I have the mirror in teh bathroom covered at the moment). Right now it looks like she went a couple rounds with Rocky Balboa, but she is a fighter and says Rocky is going down in 7th round. Vegas odds have Kathleen at 3 to 1, but I'll take any odds they will give. Betting on Kathleen is always a winner.

Keep those notes and comments coming in the blog, she loves to hear me read them! Just click the word "comments" below this paragraph, scroll to the bottom, and type whatever you want in the box, then hit post (or whatever the button says).

--Mark

Mid-Saturday Update

3 walks down, 3 to go. Kathleen ate some toast this morning and a few grapes for lunch. Food is still not overly appealing, but fortunately no signs of nausea. I have tried to get her to make a few phone calls, but she is still not up to the task, so I continue to read her blog messages (hint: send a note if you are reading this -- at the bottom of this message, click on the word "comment", scroll to the bottom and you will see a box where you can type a message).

Not much more to report, so here's a clean hospital joke. . .
Two doctors and an HMO exec end up at the pearly gates. The first says to St. Peter, "I was a pediatric spine surgeon and I spent my life helping kids overcome their deformities." St. Peter says, "You may enter." The next doctor says, "I was an emergency room doctor and I saved hundreds of people's lives." St. Peter says, "You may enter." The HMO exec says, "I ran the country's largest HMO and helped millinos of people get cost-effective health care." St. Peter says, "You may enter. . . but you can only stay 3 days, after that you will be released." ;-)

---Mark

Saturday Morning

Kathleen was able to get a good night's sleep. She was up and walking already this morning. The doctor stopped by to change her bandages and our instructions are to try and walk at least 6 times today, so 1 down, 5 to go. She was steady on her feet, so her brain is adapting to only having one balance nerve quite well. Still a lot of swelling and her right side facial nerve is not functioning very well, but the doctors tell us this is normal when there is a lot of swelling. She was able to eat part of a piece of toast and drink a little water, so the score is Kathleen 1, nausea 0 in the early part of the first half. (I could have gone with "after the first inning", but with world cup soccer in the forefront, I thought the soccer reference was a bit more appropriate).

We found out something interesting about our room -- It is lead lined. The doctor tried to tell us it was because they use this room for radiation treatment, but personally, I think the nurses knew they were dealing with super woman, so they put us here instead of a regular room. ;-)

Our room is becoming quite the flower shop! Thansk to everyone for the gifts, thoughts and prayers. They really help lift Kathleen's spirits. She is fully up to speed on all the messages sent via the blog, so keep them coming!

---Mark

Kathleen made good progress today - two short walks, bathroom on her own, sat in the chair for a while, and has not had nausea since early afternoon. She is developing a pretty good shiner, and the right side of her face is swollen. Still has pain in her head and is not eating or drinking. Baby steps are good right now and I am proud of her. Just got back to the hotel and will try to catch a few hours sleep. I am planning on a quick run in the morning than back to the hospital by 7am, ---Mark

Friday Update #3.5

Just call me scribe because this blog update is coming straight from Kathleen! She says, "Thanks for all the wishes, prayers, and good thoughts. Got up and went for a short walk. Most of the tubes are disconnected, so things are a little easier, but my head really hurts! Still no interest in food. So glad to have Mark here (scribe's note: couldn't keep me away from here even if you tried!). "

Kathleen is doing well, but she needs rest, mixed with some walking around to continue the healing process. Some swelling has emerged on the right side of her face, which was expected. The anti-nauseal meds seem to be working for now as she was able to keep down two pain pills (tylenol with codene), but she is still not up to drinking anything, so the IV is giving he plenty of fluids. She sat in a chair for about 20 minutes and made it to the bathroom after our brief walk. Given everything, she was reasonably steady on her feet with the nurse and I walking next to her for support, but not having to hold her up too much.

I read her the entire blog with all the comments, e-mails, and text messages everyone sent. She loved all the comments and laughed several times. Thank you all for your continued support. Keep the comments coming, she really seemed to enjoy them.

---Mark

Ok, I am an idiot! But let me expand upon that so you don't think I'm a complete fool. I spent the last day and a half in this massive complex (20 different elevator banks, 150 different medical units, spread over 6 floors) and finally got comfortable finding the cafeteria and bathroom this morning. Then the move us. So I just went out to the nurses station and asked "where can I find a bathroom", to which she replied, "you mean other than the one in your room". Doohhhhhh. (insert sound of palm of hand slapping forehead here). ---Mark

Friday Update #2

Some good news: Kathleen is out of the ICU and we are in a private room. University of Iowa Hospitals & Clinics - Unit 3JPW, room 3785. It is way more quiet here and she is not hooked up to nearly as many things so hopefully she will be able to rest.

Some not so good news: Kathleen is experiencing nausea every time she tries to drink even the smallest amount of water (haven't progressed to eating yet). So they continue to give her fluids and other medication through her IV. The doctors say this is a common symptom of head surgery, but Kathleen also has a history of reacting this way to anesthesia. They are giving her anti-nausea medicine, so hopefully we will have better progress to report later today. As a result of all this, she is feeling "pretty crappy". Because she can't keep any oral pain medicine down, they gave her a shot and this should help her rest comfortably. We are hoping her nausea calms down because our stay will get prolonged if she can't get up and walk around, and she can't get up until she is off the IV. So keep your fingers crossed that the next cycle of medicine does what it should.

The doctors, nurses, and other staff have been wonderful. I understand Dr. Gantz will stop by later this afternoon, so I will post an update once we hear from him.

---Mark

Friday Update #1

I know everyone is anxiously awaiting an update, but ICU procedures prevented me from logging in until now (thank you nurse Jessie for letting me turn on the laptop). Kathleen is doing good. When I asked her what she wanted to tell people, she said, "My head hurts and I want them to unhook me from all this stuff and stop poking and prodding me." I was able to stay with her in the ICU until about 11:00pm last night and they let me in just before 8:00am this morning.

Kathleen is still uncomfortable, as anyone would be after 12 hours of surgery. Her shoulder hurts from laying in one position for so long, but generally she is in good spirits and is fully aware of everything going on. She is trying to rest and heal, but when she is awake and talking she is her normal self. In fact last night she said, "How are the Fayolles going to know what is going on - they are on a houseboat at a lake in Kentucky without internet access." Pretty good presence of mind for someone just coming out of the haze of anesthesia.

The doctors came by early this morning (before I was allowed in the ICU) and word from Kathleen and the nurse is that everything is going well from their perspective. The surgery was a success, and they are pleased with her progress. We are being released to a private room somewhere around 1pm, so we will have more updates at that time.

If you click on "comments" just below this message, you can post a comment and I will be able to read it to Kathleen. No cell phones are allowed in the ICU, so this is probably the best way to get her a message.

---Mark

I just saw Kathleen. She is groggy, but the tube is out and she is awake. In her typical overachieving fashion, she told the nurse I would want to see her right away, so they let me in. She looks good for just having a 12 hour surgery. No cell phones allowed in ICU but looks like I will be allowed to stay for several hours. I plan to stay until they kick me out so I am signing off for the night. Thanks again to everyone for your thoughts and prayers,

Quick update - Kathleen is now in the ICU. Dr. Wooson said she is still out and her body is trying to clear out a long day of anesthetic. Once she is more awake, they will take out the breathing tube and I will be able to see her. She will spend the night and part of tomorrow in the ICU then we will get a regular room. I will post room info on the blog once we have it.

Great news - Just talked to Dr. Ganz in person. tumor is out. Facial nerve was stretched thin so they had to be really careful. He said it stimulates at .05 at the connection point to the brain (apparently that is good). Kathleen is likely to have some facial weakness for a short while but not likely to have permenant issues - yea!!!!! Dr. Wooson is in the process of taking fat from Kathleen's belly and puting it in the tumor area to prevent complications, then they will close and she will be off to the ICU where I will be able to see her. Just like Kathleen . . . Goes in for a tumor removal and negotiates free lypo suction on the side! Not out of the woods yet, but at least the most tricky part is done. Pray for no complications, a speedy recovery, and quick healing. I'll try to get another update on the blog late tonight if possible, otherwise tomorrow. Thanks to everyone for your thoughts, prayers, and well wishes today. They were a huge help. --- mark

Update #5

Dr. Scamman, the anesthesiologist just came out to talk to me. They are in the process of stripping tumor off the facial nerve - an extremely delicate process given that we are trying to preserve it. They believe it will take another 3 hours to complete the surgery. Dr. Ganz is taking a break. Dr. Wooson is taking over for a while. The anestheiosology crew is rotating shifts and Kathleen is stable. Dr. Scamman indicaed everything is going well. The size of the tumor is what is causing the lengthy surgery. I am sure Kathleen will be glad to have all this behind her. I probably won't have another update for a couple hours, and the waiting room I am in closes at 6pm, so I will move to the ICU waiting room, boot up and give another update in a couple hours.
--- Mark

Update #4

Just got a call from the OR - "still working on the tumor, making good progress". I am hopeful the call will come soon that everything is done. . . most of the people around me have come and gone. In the mean time, I am just trying to stay busy. Mobile technology is a wonderful thing. Here's a picture of me sitting in my little corner of the waiting room. . . Extra bonus - the guy who had the only table (and was squatting all day) just left, gotta go grab it before someone else does!

Update #3

I just got word that as of about 1:10pm they started working on the tumor. Still right on schedule, but for this type of tumor it is large, so they said it could take a while.

--- Mark

Update #2

The anesthesiologist just stepped out to talk to me. Things are going well and are on schedule. They are working on getting through the bone to get access to the tumor. They expect to start tumor removal around 1pm. Seems crazy that it takes all morning just to get to the tumor, but an abundance of caution is probably the right method when they are working inside your head.

Side note: Ouch! I just had a major setback. . . Full Tilt Poker is a blocked site on the Hospital wi-fi. Looks like I have to resort to Farkle on Facebook!

--- Mark

Update

10:30am: Latest update from the OR - "Making good progress and she is stable". Wish I had more to share at this point.

--- Mark

Off To Surgery

Kathleen continues to amaze me. It was a sleepless night and an extremely early morning - up at 4:30am, check in at 5:30am at the hospital, and a whirl wind of nurses, doctors, anesthesiologists, and others checking her, putting in IV's, making her put on highly fashionable hospital gowns, etc. (side note: keep an eye on the runways in Paris next week, I hear Iowa Hospital garb will be the hit of the fashion show). Despite all of this, Kathleen was composed and as thoughtful as always.

She is now off to surgery and I am making camp in the waiting area. They will provide updates about every 3 hours. Right now anesthesiology (Dr. Scamman) is doing their stuff and surgery will start about 9am and is not expected to end until nearly 5pm. Dr. Wooson will perform the initial procedure to get access to the tumor (which should take most of the morning) and then Dr. Ganz will take over to remove the tumor. They will have various nerve monitors hooked up to ensure they are not getting too close to other nerves.

More to come when I know more. ---Mark

I wanted to thank everyone for their emails and words of encouragement - it really menas so much to me! Today was a hard day, especially leaving Delaney and Kinsey. But I want to get better and it starts tomorrow!

Made it to Iowa City tonight. Up early tomorrow for 5:30am check in at the hospital. Surgery scheduled for 7:15am

Trying a post from my phone again, this time without a photo. Happy Father's Day!

Do you really want to know how I feel?

If you really want to know what is going on inside my head (pun intended), read on.

As a good scrapper, it was therapeutic for me to do this! The page reads:

I don't hate many things. It's just not who I am. But I hate this tumor inside my head. On May 14, 2010 I was told that I have a benign tumor on the right side of my head called an acoustic neuroma. At first, it seemed almost like no big deal. One treatment or another would get rid of it, and life would go on. Not so much. As far as acoustic neuromas go, mine is large, about 3.8cm at its largest point, so treatment options are limited. The suggested treatment is to remove it using an approach that will offer the best chance at total tumor removal and the least long term complications and side effects, but there is no question that I will lose my hearing in my right ear. Again, being single sided deaf doesn't sound like a huge deal, but it is. I will no longer be able to tell where sounds is coming from, it will be much more difficult to take in different sounds at one time, I will here in mono, I wonder will I enjoy music - recorded or at a concert? No matter what, I just won't hear the same!

My darling daughters. How will this affect them and the way we interact together? I am still nursing Kinsey who is barely 5 months old. I know kids have survived on formula for years, but I am happy to breastfeed my babies and hate the idea of it stopping so soon either because my body can't keep up or because of drugs I need to take. Will I feel comfortable being out with them at a store or playground if I can't hear where they are? How will I hear Delaney's sweet voice? What will Kinsey's first words sound like? Giggles, I know I will still hear them, but they will sound different.

How will I feel in a month? Six months? A year? Nobody knows. Everyone has a different recovery. I'm told that the brain surgery itself isn't terribly painful. But because I will experience total and instant hearing loss, I can probably expect tinnitus, maybe for a short time, maybe longer. Some people it is a mild ringing, and others it is a roaring sound that never stops. I hope I am one of the lucky ones.

Will my balance get better or worse? The doctors suspect that my balance nerve on my right side is pretty much non-functioning now and the left side has already compensated. Hopefully the extreme nauseousness and dizziness that many experience immediately after surgery will not be as severe. With time, I am hoping that I can make it better. Being able to walk with certainty on uneven ground, especially at night, hold a camera to one eye and not sway in some circumstances. They are goals!

Change in taste is another unknown. Will a wonderful glass of wine taste the same? A bite of a new food, or an old favorite?

Will I have lingering or constant headaches? There is a lot of stuff moving around and changing in my head. I hope everything settles back to where it should be without too much trouble.

Will my facial nerve remain intact? Will I be able to move my face normally, smile, blink my eye? Will I see a difference? Will my daughters see a difference? Will others see a difference?

As Mark and I have said, this sucks, but there are other things that suck worse. I hate the things that will change in my life. I hate the things that I may miss. I hate the unknown of what the future will bring.

I am strong, and have a great supporting family. Life will go on. Things may be different, but I will be fine.

Big News

I apologize for the email blast, but I just can't tell this story dozens of times [and I don't want tons of people calling saying "how are you doing", that will drive me crazy]. So here is the story. . .

First, don't freak out. Trust me, I have done that enough for everyone.

The short version - I have a brain tumor. Now that the shock is out of the way, it's benign, and I will be OK.

How and why was I diagnosed?
About a month after Kinsey was born (mid-February), I started having relatively frequent headaches, issues with dizziness and balance. I chalked it up to being sleep deprived, 40 and hormonal. Mid-March my postpartum check and blood work was normal, but I still had some odd feeling. Early in May, I started experiencing numbness on part of the right side of my face. I went to see a general family doctor, and she luckily sent me for an MRI. The MRI revealed a mass on the right side of my head, near the inner ear, about the size of a golf ball.

How do I know it's not cancer?
The way the tumor presents itself on the MRI is very classic of this type of growth. It is contained, and does not invade the surrounding tissue as a malignant tumor would.

How do I feel?
Physically, I feel fine. Headaches a couple times a week. Moving my head quickly leads to a quick (quick to come, quick to go) feeling of not being right - dizzy or unsteady balance. Emotionally, well, that depends on the minute. I/we have been trying to be "business as usual" until we had more information. Some moments, that works just fine, others not so much. I'm scared, sad, angry, and don't particularly like the idea of someone cutting and drilling into my head. The surgery will cause me to completely lose hearing in my right ear. It's unavoidable because of the size of the tumor and the nerves onto which it is growing. Losing my hearing on one side, fear of how I will feel after surgery, and what complications will emerge (hopefully none!) are all things that make me nervous and can get to me emotionally at this point. If I could continue with my current symptoms, I gladly would as they are potentially less severe than some things post-surgery, but that is not an option, this thing must come out.

What exactly is it?
It is called a vestibular schwannoma or acoustic neuroma (AN for short). What is most concerning about ANs is that not only do they grow along side your brain, thus shifting and compressing it, but in an area that has three important nerves that control your balance, hearing and face (trigeminal nerve, cochlear nerve and facial nerve). So choices have to be made on how to treat it based on patient preference, size of the tumor, and goals to retain facial feeling/function and hearing. Because of the size, our option is limited to surgical removal and our primary goal is to preserve my facial nerve.

What causes it?
Acoustic neuromas are caused by an overproduction of Schwann cells. Schwann cells wrap around nerve fibers to help support and insulate them. It is not known what causes them to go haywire in some people, and remain normal in most others. There is a very, very, very small percentage of people with a genetic abnormality that causes these tumors on both sides, but mine IS NOT genetic, I was just extremely unlucky.

What next and how is it treated?
We have met with a neurosurgeon/otorhinolaryngologist at University of Iowa a couple of weeks ago, with another team at Mayo Clinic yesterday, and consulted with a clinic in LA. All three are experts in this type of tumor, so we have a pretty good idea what we are dealing with at this point. All concur that it needs to come out sooner than later. We have decided to pursue treatment at the University of Iowa in Iowa City, and have scheduled surgery for June 24th. Dr.Gantz at Iowa has 30 years of experience in dealing with these types of tumors and generally removes 2-3 per week, so we are dealing with one of the best doctors available. Because of the size, they will use what is know as the translabyrinthine approach. I will lose the hearing in my right ear. Surgery should be in the morning and take 6 - 8 hours. I'll spend a night in ICU, and they expect 3 - 5 days in the hospital before going home. My Mom and Red are here now, and will stay to help during my recovery. Recovery time is typically 4 to 6 weeks.

Want to know more?
If you want to know more, the best place I would suggest is the Acoustic Neuroma Association. Specifically What is an Acoustic Neuroma? and Treatment Options.

What else?
We have not yet told Delaney, and probably won't until a few days before surgery. Please be careful what you say around her. After I send this email, I know a lot of those who receive it will have the first impulse to call. I appreciate that, but I can't talk to dozens of people about this. It is just too emotionally draining. If you would like to talk about it, PLEASE SEND AN E-MAIL, OR COMMENT IN THE BLOG (see below), DON'T CALL to ask how I feel (see above) or what you can do - we're good right now, and I want to enjoy the next week or so without being completely consumed by this awful thing in my head. I will try to respond as best as I can to email and the blog. I started a blog and will post updates there. If you want to know if anything new is up, please look there first - add it your blog reader (don't have one? Seriously, you have to get one. I like Google Reader). As we progress through surgery and recovery, we'll get updates posted. I hope to add a few happier posts as time goes on too. The address is http://chateauturner.blogspot.com/. If you reply to this email, please do not reply all and fill everyone's email box.

Thank you for your love and support!

~ Kathleen