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Thursday, December 6, 2012

Christmas Break



Wow, a whole month has gone by since my last post. I meant to be better about it, but between school, normal stress, and the holidays, I feel like I really need a break. As for an update on the Brian front (its still funny to me that Brian and brain are such similar words, I didn't notice it as much until I started typing them in the same sentence all the time) he is doing great health-wise. We have another MRI in January, but the last one was clean as could be, except for the big hole where the tumor used to be. That is a sight. I will try to get a disc of the MRI so maybe I can post some pictures.

Lots of people like to post their sonogram pictures on facebook. Not wanting to be left out, I will just start posting pictures of Brian's brain. There is a lot more intersting stuff in his head than in my uterus, which is empty by the way! No babies for us yet. (haha)

Anyway, I've been feeling inexplicably low again lately and I really feel like I just need a little break. I am going to try to post little updates about our goings-on this holiday season on the Facebook page, we are planning a trip out east to be with Brian's family for Christmas that we are looking forward to very much.

I hope you all have a lovely Christmas season and be so thankful for your blessings. Go easy on each other. Life is hard.

Love,
Lindsey

Sunday, November 4, 2012

The Committment/Contentment Correlation

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My happy streak continues! I have been at peace for the better part of the past few weeks and I am so thankful for that feeling. Yesterday, Brian and I were able to go up to Henry to visit with my family on my Dad's birthday. I made blondies for him and my mom made his favorite dinner. It was a good day just relaxing and reminiscing about all of the things we used to do when I was small. I really do have the best dad.

Then today has been such a special day so far. There is a really sweet family that I know, Andrew and Jen Fitzgibbon and their three completely adorable little ones. Andrew was my history teacher when I was in high school and he and his wife opened their home up to us as students belonging to the Fellowship of Christian Athletes. I was no where close to being an athlete, and I really wasn't sure what it meant to be a Christian back then either, but the Fitz's were so beautifully apt at allowing me experience the pure love of Christ through their example. Just by watching them interact with each other as a couple, I had a much better idea of the kind of marriage I wanted to have. They love the Lord and take care of each other with such tenderness and respect. I am so happy to still be in touch with them and to see how that love has grown and developed as their family has also grown. Andrew is now the director of small groups and men's ministries at West Side Christian Church in Springfield, a church that I hear is bigger than the whole town of Henry where we met.  It was great to catch up with him a little bit today and see how excited he is, and how he moves forward with faith , surprised and delighted with where God is leading his family.

Jen, I got to catch up with more recently, under less happy circumstances. While Brian was in the hospital in February when we found out he was sick, Jen's sister was on the same floor having a brain aneurysm operated on. I was so glad to see Jen and her family, but I was so worried for her sister. I am happy to report that everyone is doing really well and Jen's sister continues to improve. It was such a comfort to me, when I felt like the world was spinning too fast those first few days in the hospital, to be able to see a familiar face on the floor. I knew when Jen and her parents said that they were praying for us, that they indeed were. I can't even express what peace that brought to us.

Well today, I saw Andrew shine during his sermon. He talked about one of the most remarkable events in the history of the world, the conversion of Saul on the way to Damascus. After his conversion, and his renaming, Saul, now Paul, was able to fully and completely commit and give of his whole self to serving the Lord.

Andrew then touched on something profound. Our contentment in this life has a direct and positive correlation to our committment. As we more fully commit ourselves to living Christ centered lives, our contentment increases. Committment is so integral to our happiness. He gave the example of marriage. He said its easy to get married, but being married to someone is very challenging at times. If you are not content in your marriage, commit more fully to the other person, even if you feel like you are committing alone, you will feel greater contentment. "Love like crazy." I think everyone wants to feel like their spouse puts them first. In our marriage, Brian and I both put each other first. That way I don't have to worry about putting myself first because he does that. We both come first.

The same is true in a work situation, and I know this to be true as well. If you aren't feeling content at your job, commit to it! I know there have been times in my life where I know I am not giving my all and those are the times I enjoy my job the least. When I decide to maintain a positive attitude and I know that I honestly give all I have to my job when I am there, I feel greater satisfaction.

I just find it so remarkable. I was talking to Jen today and I was telling her, like I told my mom earlier this week that I am happy. I have joy in my life. I can honestly say that I am happier, overall, at this point in my life that I was one year ago at this same time.

Last year, we wanted to buy a house and that wasn't working out, then I lost a baby that I wanted more than anything in the whole world, I hated our tiny, old apartment, I hated that Brian worked thirds and I never saw him, and when I did see him he was too tired to do anything. I was just so unhappy.  Now things are so different.  Don't get me wrong, if I had my way, Brian wouldn't have cancer, or it would have been less serious, and he would be in remission never to worry about it again, but that isn't the reality. In spite of all of the worry and heartache his diagnosis brings to me, ultimately, I am left with hope and resounding joy. I KNOW that Christ lives and that we have a kind and gracious Heavenly Father who loves us and looks after us. I am blessed with this amazing perspective that I am sure I wouldn't have had if things weren't just the way they are. I feel so lucky everyday to see my husband, and to hold his hand and kiss his sweet mouth. I feel so grateful for each night we get to spend together warm and snuggled up close. I love the time we spend talking about our days, our worries, our triumphs while we make simple dinners together. I love walking with him, leaving him love notes, washing his clothes and picking up after him. I love it when he asks me to remind him of little things and when I get home and the house is a mess because that means he got some rest. I am so very thankful to have him here with me and to know just how precious our moments together are. I am so slow to anger, and I know that every word we speak to each other counts, so we always speak kindly. Our life is so far from perfect, but it is ever so wonderful. I hate that Brian is sick, but I love the stregthening effect it has had on our marriage. We are so much stronger because of it. We love each other so much more actively now.  I decided not to wait too long on my own road to Damascus. God expects us to act, not wait. Brian and I are committed, and I experience so much contentment because of that.

I got to visit a little bit with Andrew and Jen again after the service.  Andrew looked at me with sincerity and told me he was proud of me.  It absolutely filled my heart to hear that. I have had the pleasure of being acquainted with the Fitz's for ten years and I have sought counsel from the two of them on numerous occasions throughout many ups and downs in my life. Friends like that really are a blessing, and it feels good to know through it all that I can make them proud.

What a very special day.

Love,
Lindsey 

Sunday, October 28, 2012

Confessions of a cancer wife.

The summer we reunited.

I love Brian. I always, always have. I fell in love with him when we first met and I tried so hard not to love him while we were apart, but in my heart of hearts, I knew I still did and I probably always would. When we got back together, I picked up right where I left off loving him.

I try to keep this blog honest and not sugar coat things. I have bad days. And that is okay to talk about because it means that when I have good days, and I talk about those, you can know that I am being completely genuine.

So...true confession time.

Confession #1- Sometimes I worry that I love Brian too much. I love him so much that I need him. He makes me so much better than I was without him.  I have grown tremedously being his wife, and while I know that I could live without him, I never want to ever again.

Confession #2I spent a lot of time this year pushing Brian away. I know this sounds horrible, but a cancer diagnosis can really throw your life off balance in very unexpected ways. The most unexpected reaction I had started out as a subconscious distancing of myself emotionally from Brian.

Right at first, I wanted to be by his side each and every second. I wanted to lay with him and hold his hand and just look at him all the time. I was so nervous after surgery that he would fall, or have another seizure. I wanted to control every aspect of his days so that I could safeguard him against those things. Which in retrospect was silly because no amount of sheltering from me could have prevented his second seizire, or any that he might have in the future.

After a few months, Brian was getting stir crazy from being at home and he was finally starting to drive again. When he didn't need me there every moment, I started to realize I didn't want to be home all the time. I wanted to spend time with my friends and get out of the house. So I did. About once a week I would call my mom, or a girl friend and get away for a couple hours to just cry or vent or listen to someone else's life.

Then I started to get irritated with Brian. I was angry for things that weren't even his fault. I was mad that we couldn't try to have a baby, I was mad that we weren't looking for houses, I was even mad that he was sick. It felt like the DVD of our life started skipping at the worst part of the movie and we couldn't move on.

I don't think Brian really noticed it, except that I was moody. But I was really going crazy inside and even a little bit outside. I just thought if I didn't love Brian so much, if I did my best to focus on the things that annoyed me about him, that it wouldn't hurt so much that he was sick or that someday I might not have him with me.

I'm typing through tears right now because even the little time I wasted on those thoughts feels like too much. But I am writing this now because I did have a great breakthrough.

I don't know what changed, except that I really have been praying about it a lot, but for the past week or so, I have felt so much better. I also think it just takes some time to balance back out and get things sorted when something really big happens in life.

I have been really weepy and emotional to Brian, almost like I am letting my guard down and letting my love for him break through the little wall I was building around my heart. I told Brian last night that I feel like I love him more than I ever have. Even more than our wedding day, and I was really overflowing with love for him that day. He said, "I think maybe we have just come to understand what it means to love each other."  That just about broke my heart into a million pieces.

Most of us know what it feels like to love someone, but I would venture to guess fewer of us know what it really means to love someone else completely. As for myself, I feel like I am just barely starting to understand this, and I am almost grateful for the terrible year we have had because I feel like that learning process has been expedited in the face of our trials. I honestly think I would have kept coasting along not pushing myself to a deeper, more profound love. I think we would have made it there eventually, maybe a long time from now when we had spent a lot of years together. But this year we have really been faced with the fragility of life and what a blessing it is that we get to experience it at all.

Maybe I do love Brian too much, but its nothing short of what he deserves. He is the best husband to me. He thinks I give him too much credit, but he is honestly one of the best men I have ever known. Certainly the best I could have chosen as my companion. Neither of us are perfect, and I know we have made mistakes and will continue to do so, but I think the important part is that we are committed to continuing to try to be better for ourselves, our families, our friends and most importantly each other.

Love is a gift, so appreciate the love you have and strive for the love you want! You will be happier for your efforts! I do have a lot to say about what it means to love someone. I am going to think about that more and try to organize my thoughts.

But now I have to get back to real life. The dryer just kicked off and I have a test to study for!


Love, Lindsey

Wednesday, October 24, 2012

Fake it till you make it!

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Last Sunday, we went to Peoria for church since it was our semi-annual conference. I was really excited because I got to catch up with a couple of my Peoria friends. One of my favorite friends was there and she was asking how Brian and I were doing. I started with the usual "really good...." that I do with acquaintances,  but then I remembered I was talking to a real, sweet friend, and I said, "actually, I feel I am just faking it a lot of times. I have some really hard days." And she told me sometimes you just have to fake it..."fake it till you make it!" The way she said it inspired me so much. She was right.

Then on Monday at school I was talking with my friend Mellisa. We are at the point in the semester where we are starting to feel the burn. We have only six weeks left! I try my best to surround myself with positive people at school. I have such a support group and we always encourage each other. I think we were talking about clinical paperwork or an exam or something, and Mellisa said, "we have to fake it till we make it!"

I don't feel like its a coincidence that this silly phrase came my way in two separate circumstances from two separate friends. I have a strong testimony that our Heavenly Father hears and answers our prayers.

Lately, I have been praying for direction. I love the fact that we can communicate with God. When we communicate with Him, its through prayer, when He communicates with us, its through inspiration. I believe that we all have the ability to receive personal revelation. Elder David A. Bednar puts it so very beautifully right here. He compares revelation to light. This can work in three different ways.

1. Sometimes, it is like turning on a light switch. A dark room is very suddenly and brilliantly lit up. This kind of instantaneous revelation is rare.

2. More commonly, revelation is like the rising of the sun. Very gradually, the light gets brighter and brighter until we can see clearly.

3. Still other times, receiving inspiration is like a foggy day. There is enough light that we know it is daytime, but we can see no more than a few steps ahead of us.

I feel like my days are foggy. I know there is light around me, but I don't really know which way to turn or what to do. I keep praying to know what God would have me do. Because I have to believe, if we are being allowed to endure such a trial, Heavenly Father has something important planned for us. I know that must be the case. I feel it in my soul as I write this. Whatever is in store, I know that I have to have the faith to take those blind steps. If I have learned anything, its that God expects us to utilize the agency that he has endowed us with to make the best choices we can. We can't always wait for a sign, we need to step forward in those foggy days with the assurity that he will be there to guide and correct us on our path. Stepping out like that still takes a lot of courage for me, but I am going to fake it till I make it ;)

I am also grateful for the way God answers our unspoken prayers. This week, I have been in high spirits. I have felt more peace than I have in weeks. I am slowly starting to understand that this unexpected peaceful feeling is an answer to a prayer I didn't utter, or maybe that someone else did on my behalf. Either way, I am so thankful for it because Brian isn't having a good week. He is the strong one. So strong, that sometimes even I can't tell when he is feeling low. But this week I can definitely tell. His radiation treatments ended last Thursday and on Sunday, he started developing a pretty nasty rash on his head. It has since migrated further and further down his face and now it is down to  his cheeks. It is painful and it burns. He went back to the radiation oncologist and the nurse told him to take Benadryl because it looks like an allergic reaction. I nixed that since he is on Keppra and you can't take antihistamines with Keppra (woohoo nursing school!) The doctor recommended he try some hydrocortisone cream, but that was Monday and it continues to worsen. He is going back tomorrow to see what can be done.

I think this just has him bummed out because he was so looking forward to radiation being over and now he is having crummy after effects. I am glad that I feel better this week because I need to be the strong, positive one for awhile. I have been trying to be better about my attitude around Brian. Whenever I need to vent or cry or complain, he is my sounding board. He is my companion, my partner, my rock. In this instance though, I don't want to vent my worries about him onto him. He already worries so much about me and how I am dealing. He worries about everyone else all the time and himself last of all. But that is just my Brian.

Anyway, if you are the praying type, or the good vibe type, or the positive thought type, please shoot any and all of those things Brian's way this week. Specifically for the resolution of whatever rash issue he has going on. I think the sooner he starts feeling back to normal, the sooner we can move on and cheer him up.

Love as always,

Lindsey

Monday, October 22, 2012

Summer Recap!

Here we are in mid October and I realized I never even did Part II of our anniversary celebration! In all of my worrying, I sometimes forget to "love life and see good days" (1 Peter 3:10), but we had some really fun times this summer. Since I am short on time, I thought I would do a quick photo recap of the summer!
 
We spent our anniverary in Chicago in July. We went to the Field Museum and then to our favorite Brazilian restaurant for a really awesome dinner.
 
Then, in August we had a great party for our friend Marcus from church. It was his birthday and he told me that he had never had a real birthday party!!! Can you believe it?! Obviously, I couldn't let that continue. So with the help of our friend Bob, and the missionaries, we threw Marcus a grand party! We had a cookout, and I made a pie and a cake!! It was so fun to see how excited Marcus was, but I really think I was more excited!
 
In August Brian's sister Adrianne and her sweet family came to visit, and last month Brian's mom and sister were here. It was a great opportunity to squeeze in some family time in between school, work, and treatments.
 
 
This was our anniversary dessert! We had already eaten an obscene amount of meat when they brought this out to us! And we ate it. ALL.


Me with our cake. It was bigger than my head.

Mmmmmm...Fogo de chao

Getting ready for our feast. Marcus and one of his many talents.

Mmmmmm....

Chris (Marc's mom), me, Elder Brinkerhoff, and Bob

Happy Birthday Marc!!

Lighting the candles!

More candles!

I was obvioulsy the most excited!

Peace!

Banana Cream Pie

Brian and Marcus

Us with Marc

Us again, with Bob

This is what Brian looked like when his hair first started falling out. It fell out a lot more.

Me and Aaron post meltdown.

My neices and nephews are practically the only kids that like me, so I take all the snuggles I can get.

And Jack. He is spoiled. I love him.


Tuesday, October 16, 2012

A great night!


Tonight was a really great night. I was invited to speak at the ICC Educational Foundation's Community Celebration! All of the scholarship recipients and benefactor's were invited to attend. I was so blessed to be surrounded by my parents, and Brian, and I got to sit with my scholarship benefactor!

What a wonderful experience. Mr. Gilmore was a quick witted and pleasant dinner companion. We got to know each other during dinner and I found out a lot of interesting things about this 92 year old gentleman.  A lifetime Peoria resident, he served in WWII as a navigator flying all over Germany, and he was president of Caterpillar for seven years after starting there as an apprentice six months out of high school. He said that he and his wife wanted to donate a scholarship because he never had the chance to go to college. He said if ICC had been around when he graduated from high school, he would have jumped at the chance to attend.

My contact person at ICC was Stephanie and she was just awesome. The event went off without a hitch in great part to her hard work! I was really nervous to give my speech, but I got up there and tried my very best. I may not be the best speaker, but I was able to successfully convey my message of hope amidst our trials, and faith in spite of adversity. So many people came up to me afterward to thank me for my testimony of a loving Heavenly Father, and to offer their sincere prayers to Brian and I.

I am tired after all of the adrenaline rushing through my system, but I am just so full of gratitude and love that I had to take a moment to talk about it. Attitude is so very important in how we deal with trials. Mine hasn't been the greatest as of late, but its nights like these that make me grateful for the people around me, who consistently lift me up and encourage me to do things I never thought I could do. Things like giving a speech in front of a room of 900 people!

I am so grateful for the generosity of my scholarship donor, so grateful for the love and support of my family, and so very, very grateful for my husband who inspires me to keep striving to be the very best version of myself.

I am at peace tonight.

Love,
Lindsey

P.S. Two more days of radiation!! We can make it!!!



Sunday, September 16, 2012

Cancer Reboot


Seven months ago today, Brian had brain surgery.  Seven months! I can barely believe it! We have since finished out a winter, ushered in and out a spring, summer came somwhere, and now we are getting ready to welcome autumn next week. Fall is the twilight of the year and always has been my favorite for so many reasons. Maybe that is why I feel like I want a wake up call. For the better part of this year, an entire seven months of life with my Brian, I have been in a dense fog. I have been wildly fluctuating from the peaks of hope and inspiration to the depths of despair, and I am sad to admit, mostly the latter as of late.

Here is a look at some numbers.

215 days since seizure number one on Valentine's Day
213 days since resection one
5 cycles and 9500mg of Temodar
6 months off work for Brian
9 doses of radiation
24 more to go
3 clean post surgery MRI's
Countless prayers of gratitude, and tears of anguish shed my me.
Comfort food calories, I also lost count of, but they must be astronomical.
It has been about 5,155 hours since the thought of Cancer first crossed my mind.
 
Right at first, it was just a small, distant thought. A worst nightmare. That wasn't happening to us. But it did. And since then, I can honestly say only very rarely has an hour gone by that I haven't thought of cancer. And even still, it is not far from my mind, always in my subconcious thoughts, even in my dreams.
Brian and I have been talking a lot this past week about life and how we want to live it, and this is not the way. A lot of people find comfort and solace in belonging to and embracing the "cancer culture" as we call it. The mindset that cancer is singling people out left and right and we need to band together to "fight" it and "stand up" to it. I am not about to tell someone that this is the wrong way to deal with the complicated emotions and feelings that come with a cancer diagnosis, but it is not working for us. The thought of cancer as some formless beast invading my husband's mind with intent to destroy him scares me. And further, it is not true. I don't like that kind of personification of the disease. Brian is not a victim and neither am I. Sometimes things just happen. There isn't always a reason. Brian had some abnormal cells that got out of control. No more, no less.
Is this denial? Is this giving up? No, we are prepared to do everything in our power to treat this disease and we hope for many uneventful years ahead, but we just don't want to eat, sleep, and breathe cancer.
Just since school started for me last month, I have had new friends put me in touch with other women who are "brain cancer wives" as Brian calls us. Some are at the beginning of the journey like me, some have been dealing for a few years, and one woman I was able to make contact with, Angie, lost her husband three years ago. Interestingly, his name was Brian and he worked at CAT too, just like my Brian. She had a lot of insights for me which I will be sharing, and you can find her blog here. But one thing she said resonated with me the most last week.
I asked her how she helped her husband and this is what she said worked for her.
I helped Brian by not treating him like he was sick. The rest of the world did that. We still had petty arguments here and there. We just spent TIME together. I will say I do not regret one single thing we splurged on or one trip we took or one memory that we made that was special. Your TIME is the best thing you can do for him. I prayed with and for him. I supported him in his quests for healtheir living or for alternative treatments. I had a book of scripture passages that I prayed out loud for healing over him at night. He would fall asleep to those. Sometimes I would get irritated that he was falling asleep on them, but it was so soothing and so peaceful to him. I cried with him. I would say encouraging things to him and talk about our future. He needed hope. Natrually, this changed towards the end, but it felt good to hope for our future when things were mixed. It felt like FAITH.
 
 
I felt very sad when I read that because I haven't been doing a very good job of treating Brian normally. I think I sort of smother him, and I try to tell him what he should and shouldn't be doing instead of letting him decide. I get sad about all the things we don't get to do right now. After reading this, I decided to let Brian be in charge of how we view this challenge. If he has a positive attitude and feels grateful for each moment, then who am I to feel sorry for him, or myself. If he is having a bad day, I need to let him grieve. Right now, our days are relatively easy. I know that these are our good days, our easy days. I want to take advantage of them. That is not something we have been really good at so far either.
He and I have different challenges ahead. We are coming at this from different perspectives. What works for him may not work for me, support that I seek out, he may not need right now. I was talking to him about a support group I heard about and I had to laugh. I was thinking about how much it would help me to go, and before I said anything, he said, "I would be willing to go if I thought I could help someone there deal with this diagnosis." Such a Brian thing to say. He only thinks of others.
So this is the start of our cancer reboot, our attitude adjustment. Trying to live as normal as possible in an abnormal situation. I know this will be a bigger challenge for me than for Brian. So far I have spent a lot of time talking to him about my anxiety and fear about the future, but I am going to do my best not to do that as much. So if you are my mom ;) or a close girlfriend, watch out, you will probably be working overtime, otherwise, I need to get my mindset back to semi-normal too. Its not good to worry so much. I need to get back some of that hope I had in the beginning. Hope is so infinitely important for us as humans. Hope is the antidote to despair. I love this quote about hope from the gospel perspective, which is the way I see it.
 
 
"Despair drains from us all that is vibrant and joyful and leaves behind the empty remnants of what life was meant to be. Despair kills ambition, advances sickness, pollutes the soul, and deadens the heart. Despair can seem like a staircase that leads only and forever downward.
Hope, on the other hand, is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father, who has prepared a way for those who seek for eternal truth in a world of relativism, confusion, and of fear."
~Pres. Dieter F. Uchtdorf~
Love, Lindsey

Saturday, September 8, 2012

Ooops, I did it again



This was a stressful week. Radiation is the main culprit, but school is also busy. At work we are getting ready to go live with a new electronic medical records system and I am trying to single-handedly get that ready for our little satellite office. This would be okay, except that its a big change, and nobody likes change.
 
Today we woke up early and Brian had a headache and a lot of cleaning he wanted to get done. I got up and did things like dishes and folded laundry, and he tackled the big stuff like bathrooms. Brian isn't the most organized person clutter-wise, but he hates when things are dirty. Like when you sweep the bathroom floor every two days and there is a small animal sized pile of curly auburn strands on the floor. He is very particular about his cleaning methods. And to be fair, I hate most chores like laundry and dishes, so I just do them quickly to get them done. For example, I am not a fan of sorting laundry. When I lived alone, I usually just (GASP!) threw it all in together to save money not doing multiple loads and it worked out just fine for me. Brian has a method to every task. I don't do much of his laundry besides throwing our whites in together because he has certain rules about certain articles of clothing. Without fail when I try to help, I always end up drying something that shouldn't have been tried or washing something with something it shouldn't have been washed with by mistake. When we first got married, I was actually looking forward to washing our clothes together. Silly, I know. I wanted to do his laundry and take care of household chores for him. But after a couple episodes where I shrunk clothes he had kept perfect for 10 years, I decided maybe we could just each take care of our own clothes. 
 
I don't even want to talk about dishes. I really never considered that there were multiple ways to do the dishes, but Brian and I disagree on the best way to do them. I like to use a dish rack. I wash the dishes and drain them in the rack and then IF I feel like it when I am done, I dry them and put them away. Otherwise, I let them air dry and put them away later. Brian likes to wash and dry them as he goes with no dish rack involved. He thinks it is cumbersome and gets in the way of the garbage disposal and rinsing, which I admit is true. Brian's way is to wash and rinse a few dishes at a time and then dry and put them away as he goes. So if you have a dinner full of dishes, I feel like this takes longer. After our perspective shift this year, I decided that I didn't want dishes to be a big deal in my marriage so I gave up doing them the fast, efficient, and just as clean way my way, and now I exclusively do them the tedious, painstaking way Brian's way.
 
Brian did most of the cleaning today while I was at the computer getting my church stuff ready for tomorrow and working on homework. I feel bad that he did so much of it. I felt so bad that I decided we deserved a little treat. Then I kept looking at these blondies again. The picture isn't mine, but mine turned out true to the picture except that I used only chocolate chips in mine instead of butterscotch ones. These turned out so well last weekend when I made them and I have been fantasizing about them all week. I'm not kidding. It's serious. I think I found my Danger Food. I am actually a little concerned about it. I can smell them right now, as a matter of fact, and I haven't even gone to the store to get the butter yet.
 
Fall is on its way as evidenced by this gorgeous weather. I should be practicing pie crust and peeling apples. Brian likes apple pie more. A better wife wouldn't be so selfish with her desserts. Brian didn't eat very many blondies last week. Probably because when he went to sleep I ate half of the pan myself. He said he was full and he liked them just fine, but I do long for the day when we find a dessert so mutually satisfying that I don't have to feel guilty for picking one I know I like more, or settling for one that I don't like as much.
 
But for tonight, I am being selfish. I woke up knowing these blondies were happening today and I can't fight it anymore, I'm not that innocent.
 
 

Wednesday, September 5, 2012

Overdue update!




I am way overdue on an update for Brian. For a very large part, things feel as normal as they have in a very long time. Brian was cleared to go back to work after my last post, and I am back in school. School is keeping me from blogging! I need to try to do better so my catch up posts aren't so long.

First, I need to say that I LOVE nursing school! It is so great to have something to throw myself into and be able to divert all my negative thoughts for awhile. School is challenging and stressful, but it is a completely different kind of stress so I don't feel as overwhelmed as I thought I might. Also, I have already met a WONDERFUL and lovely group of girls who I just know will be friends for a long time. I feel like I fit in even though we are all from different walks of life and I just love the program, the instructors, the material, all of it. I am so grateful to be an ICC nursing student.

Brian is liking being back at work. The extra money is nice, and he feels good to be out of the house. I still have a lot of anxiety when he is away. I worry all the time that I will get a middle of the night phone call that he had a seizure.

As for our medical updates, Brian finally started radiation last night. His appointment was actually August 14th so it took all this time to get him started with the radiation. They closed the downtown machine for repair or replacement, I am not sure which, so all of the patients have to go out to Route 91.  In a perfect world, Brian would be going downtown for the treatments right when he gets off work in the mornings, but instead he has to go to 91 and his times are all scattered. Mostly at night right now which is not ideal since it interrupts his sleep which he needs now more than ever. Even before radiation started, Brian was very tired. More tired than he was working thirds before and I think it is just because of what his body has been through. He feels better than he did of course, but I read that it can take a person up to a year to fully recover from brain surgery, throw chemo and radiation into the equation and its no surprise at all that he is so fatigued.

I went to radiation last night and the nurses let me watch while they set Brian up. I thought it would be interesting since I am a nursing student, I just wanted to see what it was like. (Note to self: do not use husband for learning experiences.) I got really emotional seeing him on that table with the mask on. The last couple weeks with their semblance of normal have really brought me back into a denial of sorts, and seeing him like that was a gut check. Reality came searing back and I just cried. The radiation itself took only about ten minutes and was pain free for Brian. His main concern is that radiation can cause swelling. They told us if he has any headaches, to let them know because he will need the steroids again. He really doesn't want to go back on those steroids. They really made him feel terrible. But my HUGE worry is that brain swelling = seizures. I almost wish they would up his Keppra or put him back on the steroids just incase. Brian doesn't get auras with his seizures so he has no warning of when one is coming. This is a major cause of concern for me.

Emotionally, I feel like I have been in a high functioning rut. By that I mean that I can do just fine when I am busy. I like school, work is good, but when I get home I am just so exhausted and overwhelmed by melancholy. Not an outright "I need to cry" sadness, but just a pervasive heavy weight on my heart. It is, unfortunately an "I need to eat an entire half pan of blondies and save two for my breakfast" kind of sadness. I think Brian feels the same. He has been overwhelmed with stuff he feels like he needs to do around the house and with work and radiation and trying to fit sleep in, he needs to not worry about it. But there is a lot that needs to be constantly done and that stresses him out.

I try to stay positive a lot of the time because it is important to not get sucked into this cancer culture. I don't want to be a part of it. I don't want to wear it on my sleeve all the time and Brian doesn't want that either. But it is such a heavy burden and I do find myself struggling consistently with my attitude and thoughts. I read back through this blog and I was so full of hope in the beginning, and I still am. There is so much to be grateful for, but I am already tired of this new life. I am struggling with how to comprehend the changes and the implications. I know that God lives and loves us. I know that even in the midst of our darkest moments He is with us, but I wish I could feel it more. I think when I get in these ruts, I sort of tune out the Holy Spirit and I don't know how to tune back in. I have been struggling with that lately. I very much desire to recognize those small miracles that we are afforded every day, but some days I just don't see them.

I know this is in large part my own fault. Its too easy to fall into our "why me's" and forget the big picture. I have been having to live day by day, moment by moment, and its important to live in the moment, but its just as important to try to view life with an eternal perspective. This life is just a blip on the radar. We are lucky to have this time, any time.

****NERD ALERT****

 Brian and I are re-watching Lord of the Rings for the 687,413,874,231 time and this simple quote brought me to tears the other night. Frodo is lamenting that he has the ring. He says he wishes none of it had ever happened, to which Gandalf replies "So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us." Brian loves that passage and he lives it. He is so good and wonderful. He does so much for so many people. Brian says I give him way to much credit, but he really does make me better. He makes me want to be the best person I can be. I want him to see me succeed and be proud of me.

I am going to try to be better at keeping the blog up. Please pray for a good radiation experience. Pray for no burns and no swelling. Pray that the cancer stays at bay as long as possible. And pray mostly for Brian's resilience. He wants to keep working and I think he can, he is just so tired.

Also I have to apologize for the tone of this message. It got a little low. I want this blog to be informational and positive, but I also want it to be genuine. I have tough days. I fake it at school and work, and I try to hide my worries from Brian since he really does not want to talk about cancer, but I do need to vent those worries sometimes. I am consistently trying to find ways to elevate my mood so that I can really enjoy our days. These are our easy, good days! The future is uncertain, but will surely be difficult. We need to soak up each healthy moment we have and do it with joy. I will get better at this.

Thanks for reading and praying. I am grateful for each of my family members and friends as always.

Love, Lindsey


Wednesday, August 15, 2012

The Mutt

This week is even more full of doctor's appointments than I could have anticipated. Its only Wednesday morning, but we are already due for a recap.
Monday, we saw Dr. Geoffroy (pronounced "Jeff-wa"). Very french sounding isn't it? Dr. Francois Geoffroy. I love the sound of it and I love him even more. He is very good. We have only seen him twice but he is very knowledgeable, which appeases Brian, and equally personable, which is a huge perk for me. As I may have mentioned before, he has just gotten back from a brain tumor fellowship at Duke. He is on top of all of the various studies, and clinical trials both here and abroad. After each of my questions, he always cites some recent German or Italian finding which gives me hope that SO much research is being done all over for brain cancer.

This also helps to quell some of my overwhelming anxiety over the fact that a lot of times your answer with brain tumors is "we aren't sure." I have heard that answer so many times it makes me sick.
Monday, Dr. Geoffroy came into the room with his confident, cheerful demeanor and got straight down to business. He was working on getting a copy of the chromosome analysis from Mayo and I didn't even have to ask about it, he opened with it. How nice to have a doctor who follows through on his own!

One of the first things he said to us was, "well, Brian, you are a MUTT!" and then he went on to explain.

Here are the complicated and confusing genetic bits. I have discussed the 1p19q co-deletion here before. Generally, people who have tumors where chromosomes 1p and 19q are both gone (deleted by a specific genetic mutation in the tumor cells) respond better to chemotherapy than people who are 1p19q intact. More often than not, 1p19q stick together, from what I have read and understand. That is why its called a co-deletion.

Brian's tumor cells are 1p intact, and 19q deleted. And something about 1p being 1.2% meaning he actually has extra of that chromosome. I of course asked how common this was and Dr. said he had seen it "a couple times." Great. Another rare aspect of a rare tumor that is rare in someone like Brian. I really wonder if we should start playing the lottery.

Unfortunately, 1p is the chromosome that really contributes to the cancer's resistance to chemotherapy drugs. Like the ones Brian has been on for five months.
Forgive my repeating of some info from previous posts, but the further on we go, the more I learn and I can see that I have made some mistakes with information due to either misunderstanding, or misinformation up until now, so instead of editing old posts, I will just recap what we know thus far with correct info (as far as I understand it today).

Brian's Oligoastrocytoma grade III is a mixed cell tumor. Dr. Geoffroy was good to explain how pure astrocytomas behave versus pure Oligodendrogliomas to help explain to us why he recommends the plan of care that he does for us.
Pure grade III astros like to come back faster and evolve into grade IV glioblastomas sooner than pure oligos. An astro prognosis can be as little as two to three years, whereas someone with a regular old grade III oligo can be stable for as long as 10 years. What do you think my next question was?

How long until Brian's Mutt cancer gets bad again then? 

Since Brian has a mixed tumor, there is no way of knowing if it will behave like an astro or an oligo, but generally speaking, his cancer will most likely show up again somewhere in between the two, in the 5 to 7 year range. Which is better than 2-3, but not what I ever want to hear.

Because of the genetic markers, and the uncertainty over how this particular tumor will behave, we were then re-referred back to the radiation oncologist. They got Brian in yesterday, which was nice, but I always get nervous when they move so quickly. Like when he had brain surgery two days after his seizure, I knew how serious it was.

My frustration is, as always, with the uncertainty of everything. Not only the kind of tumor Brian has and the genetic make up of it which seems so rare, but with some of the reasoning behind these medical decisions. We were set up with the radiation oncologist in March, but the first medical oncologist we saw cancelled the appointment saying we should just try chemo and save radiation for later since we will only be able to use it once. Now I am left to wonder if the five months of expensive, toxic chemotherapy was even worth it, or if that is time and money wasted.

Anyway, Brian saw the brain surgeon for the first time since surgery day, yesterday. We have had so much trouble with that office and I was very wary of going to that appointment, but everyone was polite, and seeing the surgeon instead of the nurse practitioner yielded some more accurate information. His six month MRI looked good which was a huge relief!  Brian was sent home with his release to work in hand since no one there seems to know how to operate a fax machine, and set up with an appointment again, for three months. Dr. Geoffroy said we didn't really even have to see neurosurgery again, that he could just order MRI's from now on because he always wants to see it for himself anyway. I was thrilled about that, but the neurosurgeon said that sometimes, with all of the patients they see, if they just get a report from an MRI sent over it gets lost in the shuffle. (How refreshingly honest! That office is a mess!) And that if we have an appointment, they have  to look at the results. He explained that this is a triple check of sorts for Brian. He will see it, Dr. Geoffroy will see it, and the radiation oncologist will see it. Then all of the doctors, in their specialties can look for what they each need to look for. But he did hold off ordering one because we said we just preferred Geoffroy take care of it for us.

Then, also yesterday, Brian saw the radiation oncologist. I wasn't able to go to that appointment, but it sounds like it was just a consultation. Brian seemed to like him. He goes back today and I think Friday. There is a lot of preliminary work to be done before they can start radiation. Brian will do that each weekday for six weeks, 30 or 33 sessions depending on the dosage. This will make him lose his hair just in the spot that they radiate, but he can still work so we will try to get his appointments first thing in the morning so he can just go home and rest because he will be tired. He may have short term memory loss which has him all nervous, but he may be just fine with that too. He prides himself on his memory and sense of smell, so we hope to keep both of those intact always ;)

Then they will do another MRI after radiation. I was glad Dr. Geoffroy warned us that with the post-radiation MRI, a lot of times it looks like the tumor is back with avengance, and this is actually a good thing because it means that area of bad tissue is very irritated. Then they do another one around two months out and it should look clean again.
Right now, Brian is at the CAT doctor hopefully getting the okay to come to work tonight. Which will mean he needs to get some sleep today between appointments and then head back to work. He is both nervous and happy about this. He is afraid he can't remember how to use the machines, but he is so smart that I know it will come back to him.
As for me, overall, I feel like we got really good news this week, but I am not as relieved as I feel I should be and I can't figure out why. I am edgy, anxious, I have lost my appetite and I can't sleep. For me, this is ultra stress mode. This is how I get when I am super stressed or deeply depressed. I really am surprised it took this long to get to this point in the first place, especially considering I don't feel like this is the most stressful part of the process. Maybe I was just so in shock in the beginning and now it is just finally starting to sink in that this is our real life. Yesterday as we left the neurosurgery office  and I headed to work Brian asked, "do you feel weird?" and we both did. I can't even quite put my finger on it but I am just...unsettled.

I haven't wanted to eat much this week and last night I dreamt that I looked at myself and I had grown very wan and frail almost like a skeleton. What did that mean? Anyway, when I got up I ate the last piece of chocolate cake that Brian had saved for me for breakfast. I need some stress management tools because school starts next week and I need to be able to focus. My nerves just feel shot!

This post turned out very long! I am glad I didn't wait until the end of the week because I am sure there will be more to report as we start the radiation process! Stay tuned and keep praying!

Love, Lindsey

Tuesday, August 7, 2012

Tender Mercies of the Lord



Today was a really nerve wracking day. Brian had his 6 month MRI today. We won't get the results of that until next Tuesday. We are actually gearing up for a really stressful week next week. We see the oncologist Monday, where hopefully we will get results from Brian's chromosome analysis that the doctor wanted to reevaluate. Pray for good news there. Then Tuesday we get our MRI results and say good bye to the neurology office for the last time. Then Wednesday Brian sees the CAT doctor and if all goes well, he will be back to work Wednesday night. As I have mentioned before, this is scary for me, but I know it will be so good for Brian to get back into a routine. He has been talking increasingly about work and I know he will feel better to get back in the swing of things again.

I have actually been having some health concerns of my own. Ever since we have been trying to get pregnant two years ago (this month! wow!) I have been having some "female" issues. For a long time I felt like I was sort of getting blown off and having to just kick the ball down the road to address them later. Then I met my current doctor.

If you need an ob/gyn, I can't recommend her or her staff enough. For the first time, she was willing to address my concerns. I was all set up to see her in February, but my appointment fell on Brian's surgery day so of course I had to cancel it. I had another one set up for this month so I just decided to sit tight and let Brian's issues settle down before I readdressed my own.

I went in 10 days ago and was met with such overwhelming kindness and compassion from the doctor and the sweetest most compassionate nurse I have ever met! (I hope you see this B!)  I filled the nurse in on what we have been going through and of course tears welled up in my eyes in spite of my best efforts to stay calm. She put her pen and computer down and just gave me the biggest hug, and that was the best thing anyone could have done for me. She said she didn't know what to say, but the hug said it all. She filled the doctor in and when I saw her she listened intently to my concerns and told me we could do a whole battery of tests to rule out all of my worries. So I got tons of blood drawn, had another test, and scheduled an ultrasound.

Last Friday I got my results back and everything was normal as far as the blood tests went. Except, SURPRISE! High cholesterol. Not terribly high, not even enough to do anything about it except watch my diet a little more closely, but honestly, this wasn't a surprise because of all my stress eating lately. I am not wanting health food, I want CARBS, bacon, and chocolate in all of their incarnations. As I type this I am munching on a banana bread recipe from Cooking Light. Its good, but nothing compared to Grandma Branch's cheesecake brownies that I polished off for breakfast. SEE!!! I HAVE A PROBLEM! But like my sweet Emily says, Meth is a problem, chocolate and carbs are not. Love that girl.

But back on track.

I was afraid I wouldn't be able to have my ultrasound done today and almost cancelled it, but the ladies told me to come in anyway and they would see if they could do it. If they couldn't, I could reschedule and they wouldn't even charge me for it. As I sat in the waiting room I prayed that God would at least let me get the ultrasound today. I was so convinced that something was wrong, and that my other test would come back with bad news too.  It turns out they COULD do, so I was really grateful.

Another thing I love about the office is that they play Christian radio in all the rooms. I was listening to a song about how God won't give us more than we can handle and I had to pray again. I asked God to please let my test be normal, because I know he won't give me more than I can handle, but dealing with Brian's illness is enough, I can't bear anything else in this moment.

My doctor came in and told me the ultrasound, and my other test were normal.  I was so relieved I could cry. I took the time to thank the doctor and the nurse because they are always so great. As a matter of fact, one of the first questions they each asked me today was whether or not we had heard anymore about Brian's tests. Its so touching that they would even think of that first. I know they care and I know that they have perhaps one of the most important qualities I look for in my health care professionals and that is compassion. Compassion like I can't even believe compared to some of the doctors we have dealt with in Brian's case.

And they aren't even just being nice to me because of all of my extra stress. I remember one day back in the fall when I had my miscarriage. I had to go in for blood tests, a lot of them, to make sure my pregnancy hormone level dropped back down to zero like it was supposed to. It got to the point after four our five times that I was just so depressed going in there because each time I felt like I was losing more and more of that little baby I never got to meet. One day, my favorite nurse was hurrying down the hall to get a different patient and she saw me sitting on the bench waiting for my blood draw. She stopped in the middle of what she was doing and just sat down and hugged me. I will never forget that little extra bit of kindness she showed to me on a day that I didn't even have an appointment with her and she was obviously busy. I felt so loved in that moment that I was so sad. I know that Heavenly Father was aware of me in my sadness and I felt like that nurse was just an angel sent to confirm His love for me through her. She is very obviously a Christian and a shining example of Christ's love. Truly a tender mercy of the Lord.

On the way home I had a strange feeling. I was so relieved over my good news, but then I thought of Brian and his MRI today. I feel guilty that I got a clean bill of health. I told Brian about it and he of course said that's irrational, but I can't help it. I still feel like it is so unfair that he is sick. He in his wisdom and understanding said,  "its not fair, but its not unfair either. I just got sick, it just happened, but that is no reason for you to wish more sadness or heartache on yourself than you already have. We should celebrate that you are healthy!" I love Brian so much. I can't ever express it enough. He is my whole world.

In the midst of our trials and my disillusionment with some members of Brian's healthcare team, I wanted to make sure I highlighted the great and compassionate work that my doctor and her team do. The whole office is a pleasure to work with from the front desk all the way to the ultrasound tech who told me today that she would be praying for us. Please let me know if you are looking for a new ob/gyn. I will let you know where I go, you will want to go there too!

Love, Lindsey

Wednesday, August 1, 2012

Aloha!


I am once again grateful for sweet friends of mine. Today is my last day at Maui Jim. My last day of talking to people nonstop about sunglasses! This is bittersweet. While the job wasn't always the easiest, my co-workers were easily the best I have ever worked with. I have never worked in such a drama free environment in my life. It could be because we were all on the phones consistently, and so were too busy to get catty ;) but I really think there was just and understanding and a level of respect and comaraderie that everyone was able to share.
I started working there last year, and then this year, my supervisor called to see if I wanted to come back part time. I wasn't planning on going back, but I was able to arrange my school schedule so it all worked out. I know that God has a plan for each of us, and that I was just where I needed to be when Brian got sick. I was so overwhelmed with support from my friends at work. My supervisors were so flexible whenever I need to be at Brian's appointments.

Monday, I got ready to go and my friend Amy, who actually goes back to my courthouse days, stopped me and then she and Carrie came over with a gift basket and a card. There was a chocolate pound cake mix, a tupperware soup mug (which I have been eyeing for more than a year), and a recipe box! A handful of the girls I work with wrote down their favorite recipes for me! I couldn't believe it! I waited to read the card when I got to the car and its a good thing because it made me cry. I had so much fun looking at all the recipes and I can't wait to try them out. (I even found some delicious looking "soup mug mini microwave cake recipes" online!)

I will really miss seeing these girls each week. Jennifer and Tammy were the most easy going bosses, I will miss Trish, the best cubicle neighbor ever, and the way she put up with all of my crazy rants, I will miss Carrie and the compassion that radiates from her. Amy, Dani, and Kelli were always there with encouragement and genuine concern. Glenda and Debbie for their daily hugs, Lori for our health related rants,  Kris for ALWAYS checking up on me and Brian and wanting to go to bat for us with all of our doctors' office stresses. Kim for her sweet spirit, and Angie's thoughtfulness (she brings in food for people a lot and she is such a great cook, I look forward to trying some of her recipes!) 

I hate saying "Aloha" but I plan on keeping in close contact with everyone from my Maui Jim 'Ohana!

Tuesday, July 31, 2012

Control your thoughts



This morning I got a text from my dad just checking on me. :) I told him I woke up feeling stressed. He told me not to let stress to control my thoughts, and reminded me that God is in my head too, and He is bigger than the stressful thoughts. My dad is so right about things. It is a nearly constant struggle for me, but I am in charge of my thoughts and actions!

An old classmate of mine from home is struggling for her very life right now. She experienced sudden heart failure last week. I have been faithfully reading her husband's thoughtful posts on her Caring Bridge site. She had open heart surgery this morning and now they are just waiting for some signs of neurological improvement.

My heart is aching for Mary and her family. For the first time in the last five months though, I feel LUCKY. This feeling is transcending the gratitude for the many blessings that have lightened our load over the last several months.  I have been so intently focused on how much time we have left, that I haven't really been paying attention to how fortunate we are to have this time at all.  I keep thinking of Mary and her husband. She was so suddenly pulled from conciousness. What were the last words spoken between them? Did they have any petty arguments the week before? How long will it be before she can tell him she loves him again?

As difficult as a cancer diagnosis has been, I get to see Brian awake and alert each day. I get to snuggle up to him every night and thank God for the late night talks we have. We have a unique opportunity of knowing just how precious our days are... everyone's are, but we have lost the luxury of taking them for granted. It is a consequence of mortality, that we know someday we will die, but we can't remember what happened before we got here, and we don't really know what to expect after we are through here. All we have is now, but its so easy to get stuck in the daily grind and forget to soak up each treasured day we have. Or to let stress or conflict creep in and rob us of this cherished time. 

I hope mary wakes up soon. She and her family are constantly on my mind.



Saturday, July 28, 2012

The Merciful Obtain Mercy



I tell Brian all the time, most of my personal revelations come to me in the shower. I don't know why that is. Maybe it is because my mind is still quiet from the sleep of the night before, or maybe the warm water methodically pelting my skin relaxes me enough so that I can actually listen to that still, small voice.

Today, in the shower, I felt the need to revisit this talk from April's General Conference. No matter what church you belong to, this talk is full of advice worthy of your time and attention. I include a link to the text, but also the video above. President Uchtdorf's talks are easily my favorite of recent years, and I so enjoy watching him deliver them too.

I am happy I took the time to read this talk again because I have been praying for Heavenly Father to help me disconnect from my anger and frustration over Brian's lack of care. I can't see this change happening in me overnight, but "the more we allow the love of God to govern our minds and emotions—the more we allow our love for our Heavenly Father to swell within our hearts—the easier it is to love others with the pure love of Christ. As we open our hearts to the glowing dawn of the love of God, the darkness and cold of animosity and envy will eventually fade."

I think, an important distinction for me, is the fact that forgiving people who have treated us poorly doesn't mean defeat. It doesn't mean they are right and we are wrong. Forgiveness is a part of God's eternal plan. We forgive because we want to be forgiven. Once again, Elder Uchtdorf says it better than I can:

"We must recognize that we are all imperfect—that we are beggars before God. Haven’t we all, at one time or another, meekly approached the mercy seat and pleaded for grace? Haven’t we wished with all the energy of our souls for mercy—to be forgiven for the mistakes we have made and the sins we have committed?
Because we all depend on the mercy of God, how can we deny to others any measure of the grace we so desperately desire for ourselves? My beloved brothers and sisters, should we not forgive as we wish to be forgiven?"

I feel better today. I feel, at least, that my heart has been softened. My continued prayer is for the easement of the struggle I feel. There is a balance between forgiving as Christ would and we should, and simply prostrating ourselves before those who would seek to harm us. I am trying to negotiate this balance with the realization that I am my husband's advocate. If I don't do my best to make things right, no one else will. I do think I will still file a complaint when this is over. I feel that is the least I can do so that perhaps someone else will be spared from the trouble we are going through. Also, I hope my readers can appreciate that this little customer service issue we are having is the very tip of the iceberg. With it, I have reached a breaking point. If this were the only issue, I would be far more accomodating.

I am grateful for the love and support of our friends and family. I am so thankful for my relationship with Brian. Friends of Brian's that I have never met have embraced me as if they have known me forever, and I don't feel the distinction between "his side" of the family and "mine", I feel like we are one big family and that is how it should be. I know my parents and sister think of Brian as a son and brother, and I feel such a welcome and loved part of Brian's family. I have so much to be thankful for, even in the midst of this trial.  

Friday, July 27, 2012

Unbelievable

My next planned post was Part II of our anniversary celebration. I think my body is just now processing the last bits of the copious amounts of protein that we consumed last weekend. This week, however, I was completely shocked by the appalling behavior of our neuro group yet again. I was going to keep quiet about it, and for now, I still am keeping the names out of it, but come August 15th, when we have medical releases to work and records in hand...FEAR MY WRATH. Everyone that I know will know exactly who to keep their loved ones far away from. I will take Brian to a veterinarian for his next surgery before I will set foot back in there.

Here is what transpired only this week.

This time a scheduler, is being exceedingly rude. I know what is happening. Because of our prior complaints, we probably have notes all over our chart. I know this because I work for a surgeon, and whether it is right or wrong, everyone knows the "problem" patients in our office, and this has been evidenced time and time again with our care at the clinic.

Wednesday, Brian and I were at a movie to try to decompress. They called to change his appointment. He missed the call, but quickly exited the theater to call right back. Of course, he was told he would get a call back because in the thirty seconds it took him to get out of the theater, he was told she was with a another patient (which is false. Schedulers don't see patients. At least lie well and say she was on another call.) Then she called back again, but this time I took the call. I answered it in the noisy theater, apologizing as I went down the steps and when I got into the lobby I said I was Brian's wife, could I take the message as he was unavailable. Her response was a very curt, "he just called, and now he is not available?" I explained, with anger creeping into my tone unfortunately, that he was in the movie, but I was his wife could I please take the message. She told me she would "have to check on that" and asked me my name and put me on hold. When she came back, she said she needed to change his appointment. I took another time and got back to Brian. I am all over Brians chart, not to mention, she had also left a message on MY phone moments prior. She was just being rude when she put me on hold.

The exchange, or content of it doesn't bother me. People have to change appointments all the time. It was her exceedingly rude attitude. And the fact that I know we won't be able to get his office note sent over before his disability expires now that they have moved the appointment and they never send his notes over in the first place. Brian got a letter today stating that unless we do a, b, and c...his disability and insurance will be terminated. This cannot happen. I need to keep peace with these idiots because Brian has to go back to work. We cannot lose that income.

Brian made me promise to calm myself before writing this because I can't think straight when I am angry, but honestly, I am SEETHING. I can't believe the level of disrespect we have been subjected to by that entire office. I can't even fathom it. And the misinformation! Everything the NP told us about the tumor was wrong. We saw our new oncologist and he was wonderful and full of enlightening information, but much of it was scary news. He is reevaluating the chromosomal analysis of the tumor because it doesn't make sense. After five months, and two doctors evaluating it, thats nice to know. He may want to start Brian on radiation now instead of waiting.

Who can help us? I never want to see anyone in that office again, and after all of this, I don't even want that surgeon to ever touch my sweet husband even if he does need surgery. Can a medical neurologist follow this until his tumor comes back? Can the oncologist do MRI's every three months that he needs? I am THROUGH with these people. I don't care if we have to drive to Champaign or Chicago for our next surgery or our appointments. I am just flabbergasted by how we are being treated in the midst of such a horrendous ordeal. Zero compassion whatsoever.

That was Wednesday, yesterday, they outdid themselves!

First of all, in the morning, I felt like I needed to apologize for reacting when the scheduler was so rude to me. I credit this to the Holy Spirit because never could I have ever desired in my own heart to apologize to someone I felt so justified in getting angry with.  I called her at scheduling twice to apologize for reacting the way I did on the phone. I left her a message to call me back in the morning and then in the afternoon, I called again to leave my apology on the voicemail since she won't take or return my calls.

Then, Brian dropped off his disability paperwork and was met with more rudeness. Finally, after about fifteen minutes of explaining the imperative nature of the paperwork, he was told he had to pay $10 to get them to fill it out. He asked if they could make an exception for this because of all the continuous rudeness and hassle, along witht he fact that, had they not moved his appointment in the first place, he wouldn't need them to fill out the paper work, and furthermore, he would have been back to work three months ago if they had done their job in the first place. The lady at the desk said she would make an exception this once, but forced him to sign a paper saying this was a one time exception and he would be held responsible for any future charges for filling out papers.

He left the papers there and said he would come back Monday to pick them up. These papers are important because his disability, our main income, is about to expire. We are trying to get this taken care of before it runs out.

Well, then at 3:45 yesterday, the lady that does the disability paperwork called Brian to say he had to pay the $10 fee. He said he was told he didn't have to this time, and she said that was wrong. He said fine he would pay it, could he please pay when he picked the papers up Monday? She literally told him "I am out of the office tomorrow, if you don't get back here with the money by 5pm, I will not be filling these papers out for you." She refused to do his paperwork, which is her job to do. She said if he wanted to complain he could talk to the office manager, but I have already left two messages for her months ago and she doesn't take or return calls either.

Because my husband is so worried about this, he drove the twenty minutes back to downtown Peoria for the second time. When he was down there the first time, the disability lady wouldn't come out and talk to him, so he had to make a second trip after she refused to do his paperwork. Does this make any sense? I am so shocked! And she still wouldn't see him, she made the lady at the front desk take his money.

 Not to mention that this is day four of chemo this month and he is sicker than a dog. He should be in bed resting, and this insensitive woman made him come back today to pay her the measely $10 dollars. My husband is very sick, and I am sick that we are being treated like this. I do not understand how it is possible that we are being treated this way.

The cancer center has been great, with this office, we can't even get our most basic of needs met.

I am going with Brian to his next appointment. We are seeing the surgeon and I intend to make him aware of how his staff is treating my very sick husband. And then I want him to refer us to a different neurosurgeon. I will no longer tolerate this. We depend on these people for Brian's MRI's and we need someone to help us with this. I am so afraid, that the remainder of our few short years will be all the more stressful if we stay with this practice. After our July14th appointment, I intend to lodge formal complaints with as many people as I can and make people aware of this. Brian and I have insurance. We pay all bills and copays in full. We are not complainers. We are compliant and cooperative with instructions. We are respectful, Christian people. How do they treat people without insurance, with beligerant attitudes, on public aid? Or worse, someone from the geriatric community who can't keep up with all of their rudeness and talking in circles? I shudder to think.

Today I am going to pick up his records. They called today and said that if he doesn't pick them up himself he needs to send a note with me okaying that I pick them up and I have to show photo ID. What the heck?! I am his power of attorney, he made sure that I was on all of his paperwork, what if he was incapacitated and couldn't send me with a note? Is that even legal that they could keep me from that information even though I am power of attorney?

I feel at a loss. I feel I have nowhere to turn. These are the people who we need to help take care of my sweet Brian. I am afraid, and hurt beyond measure. I pray we can make it smoothly until the next appointment. I pray that he can go back to work and we don't lose our income because of their pettiness. But most of all, I pray that Brian can have some peace. He deserves it more than anyone I know. I pray that Heavenly Father will soften the hearts of those who have treated us so poorly, and the He will soften my heart and I try to disconnect from my anger.