Friday, July 31, 2009

Taking a Sick Day

Our family has been battling a bit of illness on and off for the last several days. Two of the kids got sick on our vacation to Montana last week, and the rest of us hoped to avoid it...but I started feeling sick on Wednesday evening and was very sick all morning yesterday with horrible cramping in my stomach and generally feeling lousy. A sweet friend and neighbor, Kathy Wade, came to my rescue later in the morning and brought over some OTC medicine to help relieve an upset stomach. That provided some much needed relief and I was able to at least function the rest of the day.

Yesterday while I was under the weather, Lindi and Casen had a playdate at a friend's house and their mom, Shannon Cox, was an angel and picked up a load of laundry to do while the kids played. I still can't get over all the angels and love that surrounds us each day! Thank you!

Wednesday afternoon (before the sickness set in), the kids and I all piled in my Cami Sanders' van and went to Morgan to go swimming. It was one of the first real summer activities I have been able to do with the kids, so it was great! Everyone had a blast. A big thanks to the Sanders for letting us invade! :)

Last night one of my Young Women from church came over to visit and we stayed outside for more than 2 hours, just talking. I can't wait to start getting involved with the YW again. They are great girls and great examples to me! Luv ya, Brittnie!

Today I am feeling better, so we are planning to go camping tonight for a church activity. We are all counting on it being a great adventure with lots of fun! I am sure it will all work out!

Great weekend fun to all. And, as always, much love for the continued love and support!

Wednesday, July 29, 2009

Hot Head and Sleepy Head

After a long talk with my doctor, I think we figured out why I have not been sleeping. One medication I have been on has the side effect of extreme drowsiness. I have been taking this at night, every night since my surgery. Now they are slowing weaning me off the drug (halfing my dose every two weeks) which is likely causing my sleeplessness, as my body has become used to the sleep aid. Ahh, answers are good. So, now I am temporarily on OTC sleep aids (Nyquil, Benadryl, etc) to help my body sleep until my system can get regulated and off all my medications. So, for the last 2 nights, I have slept, not perfectly, but I have slept! Hooray. Sleep is a wonderful thing!

In talking to some friends, I realized that many people do not know about the titanium plate in my head, that I mentioned in the last post. During my surgeries a 3x2 inch portion of my skull had been removed, and in order to put that back in place, a titanium plate was placed on top of the skull and 4 titanium screws were screwed into my head on the corners of the plate to hold the skull in place. The plate and screws are a permanent part of my body now (though I should go "off" in metal detectors at the airport, I am told).

The strange thing is that when I stand out in the sun, my head literally starts to heat up, like the plate is conducting the heat! Crazy! I don't know if the opposite will be true in the winter, but I may soon get better at predicting the weather! :) The plate still feels very strange and foreign to me. Every time I brush my hair or attempt to lay on my right side, I am quickly reminded about it. If I tap on the plate, I can "hear" it, though Tolan assures me he cannot hear it, nor can he feel the difference between my skull and my plate. Boy, oh boy, I sure can!

So, add to my list of knicknames: Hot head and metal head, in addition to my already established names, fat head and air head. :) Have a fabulous day! Much love!

Monday, July 27, 2009

Vacation, Updates and Being a Day Maker

We had a wonderful little jaunt to Hebgen Lake, Montana for the weekend. Tolan's parents were there with us (I don't think we could have made it "on our own") and we had a great time relaxing, enjoying the lake and spending time together! Tolan and I were both careful not to overdo it, so I stayed off the boat completely, and he stayed on the boat, but not on the water. The kids loved the boat and being pulled in the tube, though they did have a scary episode when the tube got detached from the boat and Lindi got dumped out in the middle of the lake. Trenden jumped in the water to try and pull them back to the boat. Thank heavens they were all wearing life jackets! A nice break for our family in one of our favorite places on Earth!

My family on the dock at the lake.

The kids eating ice cream at Mooseberrys in West Yellowstone.

All of us sitting around the campfire outside the cabin. The kids loved roasting marshmallows and making smores!

Grandma Brown, Tolan and Daven on the dock, relaxing!

Grandpa Brown helping Trenden and Casen learn to use the sling to shoot rocks across the lake.

Progress: So a bit of good news today! I was looking in the mirror at my smile and I tried to move the right side of my mouth...and it worked! Not a lot, only a very small bit, but I was able to move the corner of my mouth about 1/4 of an inch! That is the first time I have been able to control it at all since before my 1st surgery! Hooray! Also, my eye is still not great, but if I stay indoors and keep it protected, I can read again! I re-read Harry Potter #7 at the cabin this weekend and was able to focus enough to see the words. There were times my sight was too blurry, so I covered up my right eye and used my left, but again this is progress. The first reading I have been able to do in months!

Setbacks: I could hardly call life normal if there weren't setbacks along with the progress. :) I have not been sleeping lately, and I can't quite figure out what is going on. For several days now, I have laid in bed all night without any rest at all, until the very early (4-5am) morning hours when I finally drift off. In the hospital, my doctors recommended that I see a neurologist for my restless limbs and sleeping issues, and I think now that I will have no choice. So, I called my doctor today to see if I can get a recommendation for a neurologist and some sleeping aids to get me through until I can have an appointment. I really believe my lack of sleep is slowing my recovery process. My body is so exhausted, yet I cannot get the rest I need (at night or in the day...just can't go to sleep at all right now). So, if we can get this taken care of, things will be much better (and I will be less grouchy with my kids and husband).

Neutral: So this could be progress or a setback...depending on how you look at it! When trying to fall asleep last night, I laid on my right side and was able to get comfy after the initial pain of putting pressure on my scars and titanium plate in my head. However, after about 1/2 hour, I had terrible pressure and pain in my head, so I had to quickly change positions. The docs say I will get used to the plate in my head, but it still feels so foreign to me, hard to imagine I will ever get used to it. Still, I did rest on my right side for a few minutes...progress??!!

I spent over an hour on the phone with the insurance company this morning, going through stacks of bills. (Everyone can relate to that, I am sure!) It was a frustrating process, but I dealt with some very friendly people, and that made a huge difference. In the end, a manager actually said she would take all my paperwork and put together a spreadsheet with the insurance info on it, so I would know exactly which bills to pay and for how much. Wow! What a nice little blessing for me right now. No more mass confusion with the bills. A friendly, considerate employee made all the difference. Shelly at EBMS was a "day maker" for me today. Rather than making it more difficult for me, she made my day with her attitude and helpfulness!

So, the take away for the day: It doesn't matter what you do, you can always be of service and make someone's day brighter! So, be a day maker for someone today!

Thursday, July 23, 2009

A Mother's Love, Updates and Healthcare Contest

Last night my mom officially "moved out" of our home. She has been living with us since April 13, just 3 days after I was diagnosed with a brain tumor. When she could, she would go home on the weekends to her house in Orem to recover from running the household and taking care of my kids. Then, every Sunday evening she returned and started all over again. During my hospital stay, she took her weekends "off" and spent them at the hospital with me. For 3 1/2 months she has taken care of everything in our home and shielded me from anything that would push me too hard, wear me out too much or cause me pain. My mother's love and selflessness has always amazed me, but never more than when she came to our rescue over and over again during this family crisis. I love you, Mom!

I don't know how I could ever repay what she has done, but we did try to do a little something for her before she left. The kids and I decorated the house while she was at the store, so we could surprise her. (You should have seen me attempt to blow up balloons! I am sure that was a sight...I ended up spitting all over the place and turned the job over to Lindi and Trenden! Too funny!) We put decorative giant flowers all over the walls, made a sign and had neighbors, family and friends sign cards for her. Still, nothing could be enough to express our love and thanks! We will miss you!

My mom with my kids. We love you, Grandma!

Mom, Daven and I on our last day together at my house.

One of Mom's "days off" with me at the hospital. She never ceases to amaze me!

Tolan went to the physical therapist this morning for his 1-week post-op from knee surgery. He found out that the recovery from torn cartilage (vs a torn miniscus which was the original diagnosis) is much longer. Instead of 2-6 weeks, he is looking at about 12 weeks before he is back to "normal". He was told to ride a stationary bike everyday to help with the recovery, but he should expect to be sore for some time. He also found out that his knee problems will never "go away" or get better, all the fixes are only temporary. The doc said if he takes really good care of his knee, it may last him up to 20 years, but at some point in time, sooner or later, he will have to have a knee replacement. Hmm, let's just hope it is later rather than sooner! For now, he is bruised and stil swollen, but doing pretty well.

Today our little family is going with Tolan's parents to Hebgen Lake, Montana, one of our favorite spots in the world. This will be our first vacation of the summer, (even though we were supposed to have gone to California and Hawaii already) so we are looking forward to the weekend get away! Something "normal" and fun for all of us! So, no posts for a few days.

While I am away, keep adding up the figures for your best guess for the Cost of Healthcare in America Contest! I posted this on July 9, so find the post and give us your best guess for the total cost of my brain tumor diagnosis and removal process! The person who comes the closest gets a fabulous prize. (So far I have a $25 gift card to IKEA for the winner, but I will try to find more fun items, too.) I still don't know the answer, as the bills keep coming, so we will keep the "contest" open for several more weeks, until we are fairly sure we have an accurate accounting. Much more fun than stewing over bills!

Happy 24th of July (Utah's pioneer "birthday") and have a great weekend. Thanks to Anna and Carrie for bringing dinner and the wonderful chat. Love to all, especially MOM (Grandma Orgill), my family and my Savior.

Wednesday, July 22, 2009

Doctor's Update and Kids Growing Up

Yesterday was one of my most active days yet, which felt wonderful, but had me completely hammered by the end of the day. In the morning I went to the viewing for Tom Dee, a great philanthropist and wonderful man. I was grateful to have the opportunity to meet up with many of my dear friends at the viewing. Joey Hansen, my former boss and mentor, saw me in the parking lot and that started the round of reunions. I visited with Tim Dee (Tom's son) who is one of the kindest, most humble, amazing men I have ever known. I also saw old friends from the McKay-Dee Foundation Board and my cherished friend, Noellee Shaw. I still cannot get over how much my emotions take over whenever I see my friends and family members. Everything and everyone means more now. Every experience is elevated for seeing things through the eyes of a child, all of life is new and wonderful.

Yesterday afternoon I had another follow-up doctor's visit in Salt Lake. Today my "chauffer" was our good friend, Holly Bailey. She is such a joy to be with and I thoroughly enjoyed our car visit. :) Tolan's knee is doing better (though he keeps overdoing it, too!), so he drove to work, left early and met me at the doctor's office. Dr. Shelton saw me in the hall and immediately exclaimed, "Jodi! You look a million times better than the last time I saw you!" This was the start of another good appointment. Dr. Shelton said my hearing has improved a bit and if it continues to improve, I may qualify for a hearing aid, to help me hear out of my right ear again!

Dr. Shelton also said that what my ear is going through now is normal, as my body adjusts with the changing conditions of my ear. I go from feeling plugged to hearing an echo in my ear (really annoying) to feeling like I am listening through a seashell all in a given day. Disconcerting as it may be, he said it is normal and will eventually settle down.

He also told us that my balance issues are not just the result of my bad eye, but also my bad ear, as the inner ear helps control balance. I knew this, but hadn't thought about it, just assuming my problems were because I couldn't see. So, the good news is, in time, my body will learn to compensate and the left ear will take over control of my balance. But, for now, I still have to learn how to deal with my ear/eye/balance issues on my own, until my body can adjust.

Dr. Shelton said the facial nerves repair themselves from the bottom up (meaning the bottom of the face). This is why my mouth has improved so much, but my eye and forehead have seen no improvement. They will be the last to get better. Good info to have.

At the office we also ran into Dr. Orlandi, who performed the surgery to seal my ehustation tube. He also mentioned how much better I looked than in the hospital, which is a good thing, since I looked half dead by the end of my 34 day stay! It was a good report and it helped brighten my spirits. I still have daily things to deal with, but so far, all my doctors are sure things will continue to get better! Plus, Tolan and I had some wonderful "alone time" in the car on the ride home. I am so grateful for him and his support and it was great just to sit and visit together!

Yesterday I also got to visit on the phone with my 2nd mom and dear friend, Carol Liptrot. She is always a "pick me up" and helps me get through my trials. In the evening I visited with some family members, Martin Merx (Tolan's cousin) and Celia Brown (Tolan's aunt) and her family. I love these impromptu gatherings and they remind me how important family is!

My little Casen, the 4-year old, also had a surprise for me. He begged me to walk over to the neighbor's house and watch him jump on the tramp. So, I went over and was shocked to see him do a back flip on the trampoline!! WOW! And, my little Daven learned how to climb out of his crib by himself! Trenden earned an advancement in Cub Scouts and Lindi sewed (by herself) a project for Grandma Orgill. Clearly my kids are growing up right before my eyes...I am grateful I am here to see it!

Thanks again for all the prayers and positive vibes after my hard day earlier this week. Much love and thanks to Belinda...again! You are an angel, saint and dear friend.

Tonight my mom leaves for Orem, then will travel back to Hawaii in the coming days. Trying not to think about it yet... can't explain how much she will be missed.

We continue to be appreciative of all the help for me, Tolan and the family. We are all getting better and learning to adjust. Love to all.

Monday, July 20, 2009

I Am A Work in Progress

Today my blog title is one I "lifted" from a friend's blog, It is very fitting for me to use today and I hope he doesn't mind the plagiarism. I call Jason a friend, though I've never met him, only read of his trials and challenges on his blog. We have some things in common, but this man has endured much more than I ever have, and despite his difficult days, he pushes on.

Yesterday and today have been a bit difficult for me and the title of the post sums up the reasons why. Every day I know that I am blessed to have been part of many miracles, but like every one else, I still struggle with daily challenges. Right now, most of my challenges are related to the tumor and/or the surgery and all the side effects. At times I feel like I cannot be justified in having a bad day, knowing full well that my life is a blessing because I am still here. But, Jason summed it up when he said "I am a work in progress", helping me realize that my life is still not perfect, even if I have experienced a miracle.

I know this is hard for some people to hear. They would prefer to hear my standard "I am doing better and making progress every day" report. And so, this is what I often give. And, on most days I do have that attitude myself. However, my whole life is in a state of change and this is challenging for me. My home, routines, schedules and abilties are all being changed and challenged. My physical impairments, though improving, still cause me daily problems.

I honestly cannot see about 50% of the time because of my "bad" eye. The slightest bit of wind or air in my eye and it is painful, blurry and goopy for hours. My ear is in a constant "plugged" state and causes me to miss out on many parts of the conversations going on around me; it feels like my head is in a cloud and I am missing what goes on all around me. I still get headaches every day and they usually get worse as the day progresses. For the last 2 days, I have woken up with headaches, which is a bad sign for the rest of the day. My paralysis is improving but still causing problems with my mouth and skin. As some of you know, I also have PLMD, Periodic limb movement disorder (essentially Restless legs syndrome only with all my limbs, not just my legs). This is also a neurologic disorder that we were all hoping would be connected to the tumor, and therefore gone with the surgery, but no such luck. So, I don't sleep well because of my crazy limbs. Without sleep, all of life seems harder. On most days, I can handle any one of these inconviences, but at times, when they all kick in at once, it can be a challenge for me to deal with.

When I get discouraged because of these challenges, I have to remember that I am still here, a huge blessing considering I was on my deathbed six weeks ago. I guess what I am saying with all this rambling is that I must remember that my life and my physical abilities are all still a "Work in Progress", even though miracles have already happened. I need to be patient with myself, and ask that you be patient with me, as I continue to struggle with all the nuances that are now part of my life. Not every day will be perfect, but it is normal to cry or get discouraged, as long as we all keep plugging along, realizing tomorrow will be another day to try again.

Friday, July 17, 2009

Public Outings, Progess Updates & No Regrets

As promised, I am posting a few pics of Tolan and his recovery process. We are all grateful that his recovery is going so well. This afternoon he came back home and will finish out his recovery here. He is still iced and elevated and has much more movement in his knee today. Good sign! He is getting tired of laying around, but sure did enjoy the quiet time at his parent's house! That is all gone now that he is home!

My mom leaves in just a few days, so we are trying to make the most of these last days, while not overdoing it and wearing me out. Today we were very brave and had a big "public outing". We went to the Ogden Farmers Market. Personally, I love these types of events, where the community comes together and it feels like the whole town is there and interacting with each other. I had the wonderful opportunity to meet up with some very dear friends, Amy Wicks and Craig Bielik, while we were there. These "reunions" are so good for me. I can't express how much more my relationships mean to me now. My good friend Jodi Carlson told me months ago that this experience would change every relationship I have and she was right. How can I not love you all more, now that you have prayed for me, helped my family and kept us going? You are all cherished and loved more than ever before!

I continue to make progress each day. My eye is still having issues, I have good days and bad. I still wake up with it sealed shut every morning and the implant has not yet dropped into place. The wind is especially bad for my eye, and I have to "take cover" quickly if the weather turns on me, but it is getting slowly better. My facial paralysis is improving, I am regaining some tone in my face, which is a good sign! My hearing is also a little better. I can hear some noises out of my right ear, only about 15% of what I hear out of my left, but still, it is something! My skin is still "struggling" without the proper signals to regulate oil production, but it's really not too bad overall. My biggest challenge is that I am starting to feel more normal, so I tend to do more than I should because I think I feel OK. This is honestly a real struggle for me. And, when I do too much, I end up worse, with lots of pressure in my head, headaches and I am forced to stop. It turns out that movies aren't good either. I've tried twice now, and both times came out far worse than when I entered. Someday I will figure out a good balance.

I am being weaned off my last medication from my hospital stay. I am on Keppra, an anti-seizure medication that is mandatory after brain surgery, because the body can be very susceptible to seizures after they open up your head and play around inside. :) The medication has many side effects, so I am anxious to get off (I will slowly decrease the meds until I am completely off in about another month). My side effects have mainly been the coordination of my hands. I can hardly write (typing is much easier) because I cannot form the letters when I write. I also found out that I can't apply nail polish either, apparently that takes more coordination than I thought. So, I will be glad to get this functioning back again. :)

Yesterday my neighbor Kim and I were talking and she brought up something that I have thought about a lot recently. She has been out of town for a while and felt badly that they haven't been around to help me. But, I have realized that life is too short and precious to spend time feeling guilty about such things. We all do the best we can do, we have good intentions, yet we all still fall short. And, that's OK! In fact, it is part of God's plan, that's why we have a Savior! So, please do not feel guilty or waste time thinking about all you didn't get done today or any day. Instead, thank God each night for what you did accomplish, who you were able to touch and all the family and loved ones who surround you. Carpe Diem and No Regrets!

Prayers of Thanksgiving, Sympathy and Love

There are so many thoughts going through my mind right now, but I will try not to let all of them filter onto the blog so this doesn't end up being too long. A few updates:

* Tolan is doing well with his recovery. I got to see him today and we took lunch over to him. He was grateful for the yummy Maddox meal. :) His knee is quite swollen, but he is being faithful with keeping it elevated and iced. They changed the bandages this morning and it was very bloody (a bit gross, I heard) and it is still bleeding, but the bleeding has slowed. The "ice" machine is pretty neat. It looks like a beverage cooler, but it has a two-way tube that allows the warm water to flow out of the knee wrap and back into the cooler, and the cold, ice water to flow into the wrap. Pretty fancy. We are going back to visit Tolan this evening and I will get some pics of him to post this weekend. I thought he was pretty coherent after the surgery yesterday, but I guess he wasn't as awake as I thought, since he doesn't remember even talking to me on the phone! :) Thanks again for all the prayers and love.

* We are trying to do "normal" things every day and fun things with the family so we can all feel like we have had a summer (even though I missed all of spring and much of summer). So, we continue to picnic (with friends and family -- see pics!), go for drives, play outside and go on short walks. With my sister in town, my other family members came for a visit and we set up our waterslide and let the kids fun I think this re-integration into life is good for me, but it is still hard to get it just right every day. We had a nice time with my sister, Kristi, in town from Hawaii. We don't see each other very often and being separated during such family crises can be hard. I have now had the chance to see all my siblings except my brother Michael. Hopefully I can give him a big hug sometime in the coming months (preferably in Hawaii!!). More props to my mom, who continues to be amazing at our home. I walked in the living room to find she and Daven had created a giant fort out of chairs and blankets. Daven was inside squealing with delight and playing with his Grandma. Simply amazing!

Grandma Orgill and Daven's fort in the living room!

Daven inside his fort (with his "dino" and blanket)!!

Kristi, Mom and I during Kristi's visit here from Hawaii. (This is my most "normal" smile yet! Getting less crooked every day!)

Kristi, Christa and I in front of my house. Christa is a forever friend that we have known since our earliest days in Virginia!

Picnic in the mountains with Kristi, Mom, Tolan and Russ Miller (neighborhood friend).

Two more important things I wanted to share:

* Last night, Tom Dee, (Thomas D. Dee II) passed away. For those of you who know him, you will understand why I am saddened by this event. The Dee family has a long history in Northern Utah (ie, the Dee Hospital and McKay-Dee Hospital) and Tom and his family are some of the most truly generous, kind, and wonderful people I have ever met. His son Tim is someone I have learned so much from and consider a cherished friend. My sympathies and love to all the Dee family. I hope some day to become like they are. They have touched so many lives through their generosity and philanthropy in Northern Utah. Mr. Dee, I will miss you.

* Tolan's uncle, Bill Merx, is in the hospital again. He is having internal bleeding that the docs are having a hard time controlling. Because of previous heart problems, there are limitations on what they can do for him and what medications he can take. Please join us in prayer for Bill and his family. Multiple hospital stays can be very discouraging... pray for positive vibes, good solutions and no more bleeding! Much love and faith to Bill who is enduring this continued trial.

Love to all of you. Thanks for caring, sharing, loving and praying!

Thursday, July 16, 2009

Successful Surgery

Quick update to say thanks for all the prayers for Tolan! He had surgery this morning for what we thought was a torn miniscus in his right knee. It turns out, it was torn cartilage, severe enough that it was "catching" on his bones every time he walked up and down the stairs, exercised, etc. The good news is they were able to cut out the bad sections and "smooth" out the rest, so after his recovery period, he should be just fine.

He was a little groggy after surgery, but amazingly coherent. He is even better now, resting peacefully at his parents' house, with his leg propped up on 4 pillows as he reclines on the couch!

Thanks again for all the prayers and well wishes. We are so dependent on Tolan right now, we are grateful that his surgery went well and anticipate the same for his recovery. Love to all!!

Prayers for Tolan's Surgery

If things are on schedule at the hospital (which they rarely are), Tolan should have been wheeled into surgery about 20 minutes ago. For those of you that read this post this morning, please join me and my family in prayers for him and the doctors and medical personnel. We have had enough medical drama lately, that we could really just use a "smooth sailing" no complications procedure today. He will be in recovery for a few hours afterwards, then will be released to begin recovery at home (he will be at his parents' home).

Tolan felt good this morning as he left for the procedure. I wish I could be there with him, but I am so grateful his mother is able to take care of him this weekend since I can't. Thanks again for all the support and prayers!

I will try to post again later with an update on him and any news from here. :)

Wednesday, July 15, 2009

Old News and New Realizations

Tolan and I are still on Cloud 9 after our positive appointment with Dr. Couldwell on Monday. The words "best case scenario" keep coming to my mind and I am so grateful that things are going as well as they are. Yesterday I became even more grateful as we visited with some friends who put a different perspective on things. My mom's friends from Hawaii (Kinghorns) were in town and stopped by to say hi. Ed Kinghorn is a professor at BYUH and though I don't remember his exact title, I know it is "Neuro" something, meaning his specialty is the brain. Though he told us that he never expressed this to my parents, he confided in his family the truth of my situation upon hearing it. When he found out where the tumor was and what it was affecting, he said to his wife, "She's toast" and explained there was no way I was going to be able to survive a tumor in that location.

And yet, here I am. Forgive me for continuing to express that I think miracles have happened, but each day I come to grips with the fact that my own mortality was truly hanging in the balance just a few weeks ago, and today I am a "best case scenario". After following my story, seeing me yesterday and hearing my doctor's updates, Ed Kinghorn said another profound statement, "Well, you had half the world praying for you, so you ought to be a miracle!"

I know that not every medical (or other crisis) ends in a miracle. Babies, children, teens, moms, dads and grandparents die everyday. I have felt the deep sadness surrounding these events. I know that these families suffer deeply and may not understand the "purpose" of the death of their loved one. They may question or blame God. Though I can understand the emotions, I can never question. I truly know God has a plan for each of us, and though we may not know where our road leads, He does. Sometimes I think He gives us miracles as a reminder that He really is there, loving us and looking out for us. It is the divinity of God and our Savior that allows us to experience miracles, feel a touch of heaven, and know that we have a chance to get back to live with them and our families again someday. How blessed I am for this knowledge!

So, no matter how "old" it may get for some to hear (especially my family who hears it all the time), I truly know that angels have been with me and my life is a blessing and miracle. I may have been to hell and back, but it was worth it to know of the blessings of God and our Savior. I know they love me and would have welcomed me home with open arms...I felt that peace, but it was not my time. It was a time for miracles instead. :) Thank you for being part of a miracle for me.

Monday, July 13, 2009

Post-Operation Update Miracles & Surgery for Tolan

Today it has been 2 months exactly since my first life-changing surgery. I had an appointment with Dr. Couldwell, a follow-up to check on my progress. My father-in-law, Larry, drove me there and my sister, Kristi, came along to visit. Tolan met us there, too. The visiting time with my loved ones has been such a nice, unexpected blessing!

When Tolan and I met with Dr. Couldwell, we were both pleased to hear that he feels like I am progressing as well as can be expected. Many of my restrictions have been lifted, and as my strength (and sight) allows, I can start trying to be more normal (ie, picking up my kids and other objects over 10 pounds, getting weaned off some of the strong drugs with yucky side effects, etc). I will still get worn out and need rests, but I am allowed to purposely push myself a "little" more now. Again, my challenge is always to learn how to push without overdoing it (I have never been good at finding that balance, I usually overdo it!).

Dr. Couldwell also felt confident that my paralysis is temporary and reassured us that during the surgery they tested the nerves and they were in good working order (how you do that, I don't know). Though he couldn't put a time frame on it, he really believes I will be recovered from all the face/paralysis/skin/eye problems within a year or less! What wonderful news! My next appointment with him will be in 6 months, at which time another MRI will be done to exam the remains of the tumor. He said he believes the tumor may not re-grow because the pathology report on it showed that the tumor itself was nearly all removed. Though there are still some pieces of it on the brainstem, they do not believe these sections will be able to reproduce without the main "mass" of the tumor present. WOW! Best case scenario and truly one of the miracles we have been looking for.

So, despite originally being told I had an inoperable brain tumor in a very bad location, there is a good chance I will make a full recovery and still be able to live a long, healthy life without further brain tumor issues!! Miracles, miracles!

Though most of you have seen the photos of me in the days following my original surgery, I was quite shocked to see all of them when I got home. I was in tears when I saw how really sick I looked. (See the reminder photo below...rated PG and not nearly as disturbing as many of the photos we have on our computer.) I wondered how hard it must have been for my husband, parents, children, friends and loved ones to see me looking so frail and sick. I realize now it is much better that I didn't get to see the real "picture" of myself at the time...

In comparison to that, my life now is a piece of cake, with just a few crumbs missing. :)

So, the other piece of news is that Tolan is having surgery on Thursday, for a torn meniscus in his right knee. The truth is, he was in the process of doing all of this before I was diagnosed, but his plans were all put on hold when our lives suddenly turned upside down in April. His surgery has been rescheduled 4 times, each time thinking I would "be better" by the time the new date arrived. Well, I am still not all the way better, but he needs to have this done so he can start to get better, too.

Tolan will have surgery on Thursday at a specialty IHC facility in Salt Lake. My mom will stay with us through the weekend (she normally goes to her home to Orem on the weekends to recover a little) and Tolan will stay at his parents' house in Roy so Kay and Larry can take care of him. It is hard for us to feel like we are still a burden on our families and friends, but we truly appreciate all the help and support. Tolan is supposed to be "down" for 3-4 days, then can start to put pressure on his leg as he feels comfortable.

Please pray with us that he will NOT experience any complications (we are more skeptical these days!) and he will heal quickly and easily!

Thanks so much for all the continued support! We love you all and are still amazed by each of you!

Sunday, July 12, 2009

Family, Angels and Dates

Sorry I haven't posted in a few days. Friday was a rough day for me. I was "on my own" for the first time, and I admit, it was tough. It was just a matter of schedules not working out quite right, but I was home with the kids alone that day and it turned out to be more challenging than I thought. My physical body is still not as strong as I would like, making it difficult to care for my kids. The other struggle I have are my headaches, which are often present, but usually tolerable -- until acted upon by loud noise (ie. music or kids playing or fighting), or sadly, even just little things like too much movement, etc. So, needless to say, I quickly found myself in a tricky situation.

This made me even more grateful for my mom, who has clearly been a "buffer" between me and my children in the 4 weeks (wow!) since I have been home. She has taken care of everything, from refereeing the fights, to putting kids down for naps. She is an angel and I become more grateful for her everyday.

Just when I was struggling, another angel, a good friend, showed up on my doorstep, feeling like she needed to check on me. Together we cried and she comforted me when I was down. Even though I told her I didn't "need" anything, she showed up a few hours later with homemade pizza for dinner that night. Belinda is a saint. Later that afternoon, Debbie Cox, another dear friend came to visit. These sweet ladies cannot imagine how much they helped me that day!

I "recovered" enough that Friday night, Tolan and I went out on our first "date" in months. It was wonderful to spend a little time alone together. :) I still need to learn my limits, because even sitting down in a movie theatre was too much for me by the end of the show, but what a blessing to get out and about with my wonderful spouse! I don't know how he keeps up the energy to keep everything going on the weekends when we are "alone" at home without help from parents. Amazing.

I also had a great visit the other day with Ryan and Jenny Rackham, just down the street from me. I continue to be amazed at the love I feel from such wonderful friends and neighbors. Tears of joy streamed down our faces as we shared stories and feelings. I am so blessed to have so many angels in my life.

Yesterday was also a special day for me. The Orgill side of the family had a cousin get together. We have all talked about this for a long time, now that we are all adults with our own families, but this was the first real gathering of its kind. We discussed this option at our Grandma's funeral in January, one of the few times all of us were together. I'd like to think that last night was the start of many more great events to come...somehow silently honoring the Grandmother that we all love who started it all. (Just wish I had pictures from the fun evening!!)

My cousins were a most welcome sight. I cried with each hug and every face I saw. These amazing family members did so much to buoy my spirits along the way and they will never know how much they mean to me.

Another bonus was that I got to see my siblings, Brandon, Scott and Kristi, before the gathering, and enjoyed the company of my sister and brother-in-law, Tami and Dave, while we were there. (The others had prior commitments.) My dad is also in town again and that is always a treat to see him. Every time I think of him, I am still amazed and honored that he sat by me in the hospital, day after day, hour after hour...such love and devotion I will never forget!

In Orem, I also visited with our dear friends, the Pimsakuls. These amazing people have been so supportive of my family, not only for the last few months, but for the last many years. They have been great neighbors and friends. Their strength, attitude and testimonies are blessings in all of our lives. (Not to mention their homemade egg rolls are the best around!!) We all love them dearly and are grateful for their family!

This week I am excited because my sister, Kristi (from Hawaii), will be joining my mom in helping out at our house. I am looking forward to the time we will have to spend together! More updates on this to come!

Thursday, July 9, 2009

Healthcare in America CONTEST and Feeling New

I hear nearly every day on the news about the controversy over healthcare in the U.S. Critics say the cost is too high, the insurance system doesn't work, and the process simply isn't functioning properly. I'd like to provide an alternate view to those opinions.

Yes, the cost of healthcare can be high, but we are so blessed to be in a country where we have access to the very best medical technology in the world. I am sitting at my computer today because of this technology and the physicians who spent years of training to hone their skills and who are brave enough to try something new. We were told my brain tumor was "inoperable" by an entire team of specialists, before we found Dr. Couldwell. His specialty is listed as working on parts of "the brain previoulsy thought to be inoperable". He was "lured" here from back east to be part of the U of U and Huntsman Cancer Center Hospitals, where they are doing new and experimental, LIFE-SAVING procedures. Do I think his per hour fee is high? Yes, I do. Do I care? No, I don't. It because of people like him that I am alive!

CONTEST: It has been interesting to see the medical bills start to pile up. I decided some time ago to make this a fun process, rather than a painful one. So, here goes. We want all of you who read the blog (even if you haven't commented before) to submit your best "guess" as to my total hospital and dr. bills to date. The person who comes the closest to the actual amount will win a fabulous prize (still to be determined:). This is all in good fun and will hopefully help us appreciate how good our healthcare really is, even if it does cost a bit (thank goodness for insurance).

So, please base your "guess" on the following info:
* 2 MRIs to diagnose the tumor
* Multiple dr. apts. with specialists, neurosurgeons, ENTs, etc.
* 2 Full body CT scans and 2 more MRIs prior to suregery
* 2 Craniotomy surgeries, the first with 1 neurosurgeon and 1 Neuro ENT, the second with a Neurosurgeon (10 hours of surgery total)
* 2 Lumbar drains, inserted and removed
* 4 CT scans in the hospital
* 1 Brain surgery to seal the Euchstation tube, by a Neuro ENT (2.5 hours total)
* 34 days in the hospital, 28 days in the Neuro Acute Care Unit, 6 days in the Neuro Critical Care Unit
* 1 "Gold weight" eyelid surgery by an opthamologist
* 3 Follow-up apts (1 with each specialist)

So, give or take a few minor procedures and hundreds of shots and doses of medication, this is the basic list. GUESS AWAY!!! Oh, and I don't know the "correct" answer yet, as bills are still coming. We will determine the winner in about a month.

A special thanks to my good friend, Becky Sevy, who gave me a wonderful haircut and color this morning (and gave Lindi a darling haircut, too!!). When I saw the finished "product" in the mirror, I wanted to cry. My hair looks "normal", even if my face doesn't. :) You can't see the big patches of hair that are missing because of the wonderful style. I feel "new" and refreshed by this great change. Thank you, thank you! It may seem like a "little" thing, but feeling normal is very big to me! See the pics below of my new "do".

Wednesday, July 8, 2009

Eye Updates and Inspiration

(Warning, long post ahead:) Tuesday morning I had an eye appointment in Salt Lake. My good friend, Debbie Rhoads, was kind enough to drive me there. The long drives to appointments has turned out to be one of the blessings in this experience, as I have had much time to visit with people I love. :) The appointment itself was fast (amazing for doctors' office visits!) and Tolan (who met us there) and I were able to spend a good amount of time with the doctor. He looked at my eye, now 2 weeks after surgery, and gave us some good news and bad news.

* Good News: My cornea has healed nearly 90% from its pre-surgery condition. My vision has also improved (tremendously) in my right eye because my eye is no longer as dried out and irritated, and therefore better able to focus.
* Bad News: My lower eyelid is inverted, or turned inside out. The pink part (usually inside the eye) is sticking out because of the collagen implant that was placed there to build up the lower lid. The collagen was an actual implant and he had to choose the size of the implant for my condition; he went with a 7mm implant, which is not settling into place as nicely as it should. In hindsight, he would have gone with a 5mm, but there is no way to tell ahead of time.

So, what does all this mean? Well, my eye really doesn't work for me yet. Because of the exposed section, the eye is protecting itself by constantly producing lubrication to cover the "inside out" part of the lid. This means that my eye is nearly always filled with "goop" (think about a clogged tear duct in babies) and is sealed shut every day when I wake up. I can't see out of it well because the lubrication makes my vision blurry. This makes my depth perception and overall vision off, making it nearly impossible to drive and harder to walk around in areas where I don't know the "lay of the land". I also don't have good peripheral vision, and have been known to run into my little ones, not even realizing they were standing next to me. Oops. :) So, the difficult part is that we have to "be patient" (says the doctor) and wait it out, perhaps as long as 6 more weeks to see if the implant drops into place.

I've decided the being patient part and waiting is one of the many lessons I have to learn from this experience. It is hard for me to wait and it is very hard to think about several more weeks without use of my eye (and therefore no driving). Another little setback that can be discouraging at times, but still, a small thing in the scheme of things.

On to a happier note, over the weekend I had the chance to spend time with my good friend, Jodi Carlson, whom I wrote about in a couple of earlier posts, including a tribute to her before my surgery. We used to work together and became good friends back then. Today, we are the "Jodis" whose lives are totally changed, yet we have many similarities. Jodi C. had a stroke and I have my tumor, but we both now have facial paralysis on our right sides, we've both had the gold implant eyelid surgery, we both have crooked smiles, and we both have bright outlooks for the future.

Her husband, Robert, said we should take a picture of us, while we still have similar features, so we could remember this time when we look alike. (As each of us improves with the paralysis, our faces change as our muscles move our mouths, eyes, etc. back to their proper places.) My face had already changed much from it's original post-surgery state, suggesting that some of the paralysis was from the swelling in the brain, not nerve damage. Jodi C.'s face has also changed a great deal, but now more than 18 months after her stroke, improvements come a little slower than they used to.

So, before we began our wonderful visit, we took this picture. Jodi is still an inspiration to me and one of the few people who can really understand how I feel and what I have gone through. There are some things people just can't really "get" unless they have experienced it themselves. So, here's to my hero, and inspiration, Jodi Carlson, who keeps going, day after day, setback after setback, with a little progress here and there, and keeps fighting the good fight. Love you, Jodi, you are amazing!

Also, thanks to my wonderful neighbor, Cindy, whose visit yesterday brightened my day. Her gift to me is one that I will never forget. Thank you, Cindy, for sharing something so wonderful and personal with me. You are yet another blessing in my life! :)

If you made it through this whole Thanks and love to all.

Monday, July 6, 2009

"Lucky" to Be Alive, minor side effects & fireflies

Today was yet another doctor's appointment...but this time, it wasn't for me! We had to take Trenden in and I saw his doctor for the first time since before my big "adventure". When he saw me, he immediately asked what had happened, if maybe I had gotten Bells Palsy or something. When I told him a very brief version of the story, he looked right at me and said, "You're lucky to be alive!" I have been thinking about that all evening. I've decided he is wrong. I am not lucky, I am life was always in God's hands and I am blessed to know that He allowed me to stay here to be with my family and loved ones. :) Thanks again for the many prayers that are still being offered for us, they are still making a difference each day.

I did find out a few things today that are minor side effects from all my surgeries and complications. While at the doctor for Trenden, the dermatologist told me that there is a 50/50 chance that I may lose my hair in the coming weeks and/or months, due to the trauma and stress my body has been through. (Anyone who has been pregnant/had a baby knows that this can happen on a small or large scale with body and hormonal changes, too.) I am not too worried about this, but if it does happen, I think I will use it as an opportunity to try out a few new hair styles (wigs). :)

Another side effect is one that has already happened. My skin has been breaking out in horrible acne "rashes" all over my face and neck. The doctor told me this is because of the damage to my nerves from the craniotomies, causing my body to "forget" how to regulate the production of hormones, oils, etc. Interesting. Had no idea the nerves would be related to this condition, I thought it was just stress. So, he gave me some things to try and said they can also do laser treatments that are effective in managing nerve-damage related skin issues. Good to know. Hopefully my "sample" products will help!

Tonight we did something totally "normal" as a family and went to Baskin Robbins and got ice cream, then went to Weber State and fed the ducks at the duck pond. My mom had never seen the campus, so we took a little time and walked around. I walked around the campus...such a "small" thing that is really not small at all. I am getting stronger every day and again, I realize that I am blessed for each "miracle" that happens in my life every day.

Friends and loved ones continue to show support and we are so grateful. A really fun "package" arrived in the mail over the was a 2-liter bottle filled with fireflies! Tolan's sisters (Mindy and Lisa and their families) live in Indiana and are lucky enough to have these fun little bugs around. So, they decided they would share the joy and they sent some to us for the 4th of July. My kids were amazed and a few of the fireflie have even stuck around, as we saw one last night in the front yard. What a fun and creative way to share some fun!

My love and thanks to all for your continued support. :)

Sunday, July 5, 2009

Independence Day

After a talk with my dad the other day, I've given a lot of thought to the word independence and the new meaning it suddenly has for me. How grateful I am for the indepedence of our country. I live by an Air Force base and I feel blessed and very patriotic every time I see (or hear) the F-16, F-22 or A-10 jets go by. I am grateful for the many blessings of living in this free country.

Now independence is also something I strive for personally...looking forward to that time when my body will be like my country, free and able to do what I want to do. :) I am getting better everyday, so I continue to hope and pray that my independence day will be soon.

I was blessed to feel well enough to go to church for a short time today. What a blessing to see so many beloved faces! I was totally worn out, but it was worth it. Afterall, I still feel like it is all of YOU, including my many friends at church who helped me get through these last few months. Thanks again.

So, Happy Independence Day (weekend) to everyone...let's all be grateful for our blessings and ALL the freedoms we enjoy, both big and small.

Friday, July 3, 2009

Tribute to a Caregiver -- Happy Birthday, Mom

Today is my mother's birthday. I have always loved her and admired her, and I've been lucky enough that we've always gotten along. But, now, more than ever I am so appreciative of ALL that she does. She truly amazes me. In the last 3 months, she has gone from being my mother and my kids' grandma, to being a live-in care-giver for me and second mom to my kids. When my dad and husband were at the hospital with me, she was at my house, cooking, cleaning and taking care of my family, because I couldn't.

It is hard to realize that I can't take care of my family and home the way I once could, but my mom has been absolutely wonderful in doing what needs to be done. She doesn't act like it is a burden, but that it is a priviledge to be able to do what she can to help. She helps me push myself, without "pushing" too hard or being too protective. She listens to me when I cry, complain and feel frustrated with myself. She cuddles my kids when they cry, cooks the meals, does the laundry, cleans the house, goes to the grocery store and generally runs everything...and I contribute a little here and there as I can. Yet, she praises me for each of my "little" accomplishments and allows me time to rest when I am tired from making my bed and dusting my room. How can I express thanks for all of this??? I can't, I've tried, but words are not sufficient.

The life of a caregiver is harder than that of those being cared for and I am soooo grateful for the "caregivers" in my life. My husband and mom are truly amazing.

So, Happy Birthday, Mom. I love you. I am grateful for you and all you have done for my family. Wish I could be with you today on your special day, but know that I will be with you in spirit!

Thursday, July 2, 2009

Girls Camp, Picnics and Headaches

On Tuesday evening I had the chance to go visit the 12-18 year old girls from church that I work with at their week-long camp. Normally I would have been there with them all week, but I am just glad I got to visit with them at all. What a choice and wonderful experience this was! We shared so many wonderful, happy tears in seeing each other. In most cases, this was the first time I have seen the girls since leaving for the hospital in May. Some of them have come to visit me, so they were more prepared to see the "new" me.

I can only imagine what it must have been like for the girls to see me, my face half paralyzed, not walking well, my eye puffy and red... But regardless of what I must have looked like to them, they were truly amazing in their show of love to me! The hugs and tears are unforgettable. They also helped me at dinner time, as I attempted to eat without drooling or spilling my drink. They accepted me 100% and seemed honestly grateful I was there. What a blessing this was for me! If they only knew how much I love them!!

Visiting with Emilie and Lisa at Girls Camp!

"My" girls helping me walk around the campground. Without them I could have ended up in the firepit! I'll see if I can get more pics from other leaders. :)

Word spread quickly that I was visiting camp and before long, many good friends started appearing at the campsite (from neighboring sites where other wards were camping). Each of these little reunions brought me to tears and I tried to express my thanks for all the love and support these wonderful people have shown me. But how can I really say thank you for what all of YOU have done?? I simply can't. Just know you all have my unending love and gratitude.

Yesterday I pushed myself to see if I could make more progress. I made my kids lunch for the first time (it was only macaroni, but I did it!!). I also helped my mom clean Lindi's room and worked around the house a bit. As a reward for all our hard work, my mom packed us all a wonderful picnic and we went to Fort Buenaventura and had dinner in a great spot by the river. It was a super evening and I was so thankful to spend fun time with my family and mom. My mom is the most amazing woman...she packs a picnic better than anyone I've ever seen! We loved the time together in the woods!

We went on a drive in the mountains afterwards, which was also beautiful. It was challenging for me, as the altitude (I think it was the altitude that did it) caused me to have severe head pain. Since the surgery on my ear/brain, I haven't really experienced pressure changes, so it is hard to say if this was the real culprit. Still, it was worth it for the views and the company!

Today I have been suffering with headaches again. These are normal, both for the tumor, and for my recovery, but some days are tougher than others. I think I may have worn myself out a bit the last few days, so I am still working on finding that balance between pushing myself to progress and not over-doing it. I rested and took some painkiller this morning and am feeling a bit better now. I am so glad, since Janene Bennett is coming over to watch the kids so I can "take" my mom to lunch for her birthday (on the 3rd). She deserves far more than lunch, but it will be wonderful to spend a little time alone with her, just to celebrate!! LOVE YOU MOM!!

Enjoy some pictures from our family night out last night. Thanks to the Bennetts for all their help this week (and always!).

All of us enjoying our picnic!

My mom is sooo amazing! She does the best picnics and helps bring lots of smiles to little (and big) faces!

So many smiles. My mom especially loves picnics and being in the mountains (perhaps that's why I love it so much too!!