Valentine's Day Weekend

I never felt like Valentine's Day was a big deal. We always did a card, and maybe dinner on the weekend, but nothing extravagant. It will always carry a special significance for me from now on though, as its the anniversary of Brian's first seizure. I'm not sure why a year feels like such a huge milestone for me. Maybe its because I've made a committment to myself to live a better, richer life, and a year seems like an appropriate amount of time to have adjusted to some of life's peaks and valleys.

I've noticed my stress level ebbing and flowing a lot lately. I never thought I would say this, but I am almost thankful for the little stresses of life (The girlfriend drama, do women ever grow up? The school stress. What am I going to make for dinner, and how am I going to get the laundry done?) if only because it means that the real problems in life are manageable right now. A year ago at this time, I was sitting in the hospital with my sweet Brian watching him get more and more swollen and just praying that pathology results would come back okay. Everything else fell far, far away and while I was overwhelmed, my priorities were straight. Take care of Brian. Get rest. Eat. Pray. Repeat.

Now that we are out of crisis mode, I have the freedom to add a few things that priority list, but the core remains the same. My marriage is my number one priority. Marriage is hard work. Even good marriages need serious maintenence so that they don't fall into disrepair, just like a house. When I don't clean my house for a week or two (who am I kidding? I haven't done a good deep clean in months!) I don't want to live in it. Like a house needs upkeep, so does a marriage. This means lots of communicating, and I get uncomfortable with maintenence conversations sometimes because I want to believe that Brian and I are just perfect for each other and things should always fall magically into place. Perspective is everything though, and knowing that these conversations don't mean that our marriage is broken, but that we are working to keep it healthy makes all the difference. We constantly grow as a couple, and it is so important never to take the blessing of our marriage for granted. We chose each other as companions, and we must choose also to progress together.

On that note, here is a little photo journey of how Brian swept me away this weekend to celebrate and decompress after a very tumultuous year.



I woke up early on Valentine's Day to make pink, heart-shaped pancakes for
my love, and when I came into the kitchen, I saw....



this lovely surprise!! Brian got us tickets for The Hobbit in IMAX 3D at Navy Pier
and we were spending the night in Chicago!
(Of course notice the Hobbit font which had me squealing with delight at 6am.)

We had a corner suite and it was great!
We ate at Fogo de Chao and came home and spent the night cuddling and digesting ;)

Love!

Day Two, almost Hobbit time!

For lunch we I had a New York dog with sour kraut and brown mustard,
and Brian had the "Ditka Dog" a footlong spicy polish sausage with chilli and cheese on french bread.
But that's not all, we topped it off with a mint chip dazzler!

It was delicious!

So sad...time to go home!

 

It really was the best Valentine's Day ever. I am so grateful for such a sweet Valentine. I am thankful that Brian is healthy and confident that he will continue to improve. Relationships are so important. Whether its a friendship, or a relationship with a significant other or your family, do not take it for granted. As humans we are programmed to depend on each other. Work hard to cultivate those connections. It is not a sign of weakness, but of strength when you can continually strive to thrive within your relationships.

I'm ever grateful for the strong and true relationships in my life.

 

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 

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 #2- I 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

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

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!!!

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

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

A Smashing Anniversary: Part I

Today is our actual anniversary! Two years ago we got married at noon on a hot July Saturday. I have so many great memories from that day. On Friday, we are taking off to Chicago for a day of   museum-ing and MEAT at Fogo de Chao! Ooooohhhh, I can't wait.

I love this one of Brian.

Here we are with our lovely bishop who performed the ceremony. We were laughing and so happy.

Well, we have a pizza from Gino's East baking! Another Brian surprise. We have gone there on many romantic symphony dates ;) and I want to quickly get back to my husband, but here were the little ways we surprised each other today.

I came home to this wonderful flower arrangement!

For Brian, I made a SMASH Book! They are really unique and fun, themed journals. I picked the wedding theme and filled it with a bunch of things I have collected over the years of my relationship with Brian. I hung on to everything, letters, ticket stubs, fortunes out of cookies. Lots of things. During our time apart, I actually threw everything away one night about two years after our break up. Later that same night, I dug my box out of the garbage because I couldn't bear to lose that part of my life. I am so glad I kept it all! Its fun to look at now and I thought the Smash Book was a great way to showcase some of my favorite pieces.

Here are some of my pages!

I will try to post more pictures later. I think this project turned out really well.

That is it for now! I am really excited for our weekend so I will try to remember to get some good pictures!

Five Months

Five months ago today, Brian went into brain surgery. By this time that night, I was finally let in to see him. They had to keep him in recovery forever because they didn't have a room for him. We were blessed with a lot of visitors that night to keep us company. I spent a lot of time just standing by my husband's bedside and just looking and looking at him. I remember a nurse telling me that I would feel relieved when I saw him. I couldn't believe that could be true with all of the news I was trying to process, but it was. When I saw him after surgery I was flooded with gratitude and relief that he made it through that hurdle okay, and that his tumor was OUT.

Today we saw our new oncologist for the first time. What a complete difference! He specializes in primary brain tumors like Brian's, and is passion for it is evidenced by his confident knowledge and compassionate demeanor. I love him even more than I detest the neuro NP, who if you can imagine is even dumber than we thought! It looks like everything she has been telling us about Brian's tumor is wrong. First of all, we were told that brain tumors come in four stages and two grades, high and low. Today we learned that this is not true of Brian's tumor. His is a mixed tumor as I have mentioned before, comprised of astrocytes and oligodendrocytes. (I am very grateful for my anatomy classes because I could follow along with some of what the doctor was talking about. At least I know what those brain cells are responsible for).

Anyway, today we found out that for mixed cell tumors like Brian's, there are no stages, just grades. It can be a grade 2 or grade 3. I piped in to ask why the NP told us that his tumor would come back stage 3 or 4 next time. He clarified that when Brian's tumor comes back, it could be exactly the same as now, the grade 3 oligoastrocytoma, or it could evolve to a glioblastoma. A glioblastoma multiforme is classified as a grade 4 astrocytoma. It can also be mixed like Brian's will be. GBM's are the Mac Daddy's of brain tumors. They are hard to treat and invasive because of vascular proliferation. This means that there are blood vessels in the tumor that are being fed by the vasculature of the brain. and feeding the blood vessels means feeding the tumor. But that is something I am not going to worry about right now. It could still come back grade 3 like it is now.

Additionally, the oncologist was concerned about Brian's pathology. Specifically the chromosomal analysis that we built our treatment plan out of. The report he had today was just the results that the hospital interpreted from Mayo Clinic's pathology report. He is going to get a copy of Mayo's actual report to see for himself. I am trying not to worry until we have the final report at our next appointment. I am a little frustrated though. Brian has been doing chemo for four months. Our new oncologist said that pending the findings of the chromosomal analysis (that I thought we already had) he may want to change up our care plan a little bit. We were saving radiation for when the cancer comes back, but we may be switching to a daily chemotherapy dose coupled with radiation in the near future. Its a lot of confusing chromosome stuff, but in simple terms, the report was confusing as to whether he has the chromosomal co-deletion we had hoped for or not. From what I understood from my research, it was an all or nothing type of thing, but his report said he had a 40% co-deletion. That was confusing to me, and confusing to the new doctor which is why we are going to look into it further.

As happy as I am about our new, very on top of things doctor who I think I really love, I was starting to feel a little bit deflated about all of the new info we got today, and frustrated that we got such incorrect information up until now. I made a concious decision not to let even more uncertainty overshadow our week. Tomorrow is our 2nd wedding anniversary and I plan on enjoying the week's festivities. I finished Brian's present and can't wait to unveil it to him.

I went straight to my new (old) job after the appointment today. I said a prayer on the way there that I would be able to stay composed and have clarity of mind. That I would be able to choose hope instead of worry. I found this quote when I got home today and it exemplifies how I feel about hope and what it means to me.

"Real hope...keeps us 'anxiously engaged' in good causes even when these appear to be losing causes on the mortal scoreboard.  Likewise, real hope is much more than wishful musing.  It stiffens, not slackens, the spiritual spine. Hope is serene, not giddy, eager without being naive, and pleasantly steady without being smug. Hope is realistic anticipation that takes the form of a determination, not only to survive adversity but, moreover, to 'endure...well' to the end.

~Neil A. Maxwell~ 

Mixed Emotions

I am in need of a major attitude adjustment. The latter half of this week has been really hard. I am in a really bad mood. I try to keep this blog as positive as possible, but every so often I need to just vent. If I am going to be sincere, then you have to get a little of the bad along with all the good.

Right now, Thursdays and Fridays are my free days. I only work Monday through Wednesday. When I am home with nothing to do, I get bored. And when I get bored I start thinking, and when I start thinking I tailspin into major over analyzing and then I get depressed. I was sad all day Thursday and all day yesterday. I cried off and on for 48 hours and here is why.

It's evident that we need to get some "normal" back into our lives. Brian had his first seizure five months ago today. I have said it before, but it still rings true; I feel like our lives stopped that day. I wake up each day and cannot believe its ninety degrees outside because I feel like we should still be in the cold grip of February. But life carries on. My sister had a birthday, so did Brian. Then Mother's Day, my birthday, Father's Day and the Fourth of July. Our second wedding anniversary is just three days away! But none of it feels normal. Brian hasn't been able to get back to work, and I have been out of school for the summer.

Monday, I am starting another job. Dr. Chiou and I have been talking about me coming back for about a year now. I was going to start at the beginning of the year, but then when Brian got sick he said to just call when I was ready. Dr. Chiou is great. He has always looked out for me. I left there two years ago when we got married and have regretted it many time since. It's nice because I know everyone there, I know the idiosyncrasies of the office and I love the patients. And all of this working around my school schedule. It will be great experience while I am in school. Coincidentally, July 16th is the very same start date I had five years ago when I started there so I feel like I have truly come full circle in some ways.

Brian sees the oncologist Monday and then the neurologist at the beginning of August and then he will hopefully get to go back to work. I think that life will start to feel normal again. I will be working and studying, Brian will be back to working nights. This should make me happy, right? It's what we need.

WRONG.

I am terrified. I am so worried that he will have another seizure. He is going to be so exhausted trying to work third shift, taking chemotherapy, and trying to keep up with his calling at church. I am afraid he will have a seizure at work or while driving, and get really hurt. And we will be so busy again that we won't get to see much of each other. That makes me sad.

I saw the quote at the top of the page and rather than feeling happy when I saw it, I PANICKED.

When cancer invades your life, everything changes. Brian and I are well aware of the many blessings we have been afforded, but have we made them count? We had all this free time and we didn't do anything with it. Furthermore, I worried most of it away and now its gone. Our circumstances haven't changed, but our timetable has. Or maybe that is an illusion. No one knows how much time we have on this earth, but now I have become acutely aware of how precious that time is. I just feel like I wasted five months we should have been making the best of.

My goal is to work on this. I need to find a way of coping. Do you ignore the huge cancer elephant and carry on like nothing is happening and risk taking your time for granted? Do you keep it at the forefront of your mind and risk worrying too much and letting it ruin your time? It seems like a no win to me right now. I want to be able to accept that this will be a part of our life, but I don't want to worry constantly about it. I want to be able to be grateful for each day we have instead of feeling sorry for myself, and mostly, I want to make our blessings count.

There are a lot of people I know that are having interpersonal issues in their relationships right now. Sometimes I want to shake those people and say, "Look at what you have here! You have someone to share your life with who is healthy! You have beautiful healthy children and while none of us know how much time we are afforded, you don't have serious illness looming over you. Take advantage of your health and work through your issues and enjoy the love that you have!"

Brian and I were talking about all of it and he actually said, "I wouldn't trade what we are going through for what they are going through." I have to admit, I was a little taken aback. He said even though he may be sick, he is feeling great right now, and we have a loving companionship to be grateful for.

And he is right. We do have a very loving, relatively drama free relationship ;) and I like it that way. It made me think back to the time when we were separated by choice and not circumstance. Was that worse than this? I don't know. I was sad that we weren't together, but it was because we decided not to be together. I remember some of the thoughts I had then and I think maybe Brian is right. Even if cancer shortens our time on earth together, we have the comfort of knowing how much we love each other. We love each other tremendously. That is a blessing that I count every single day. 

Love

Today, I am very excited because I had the wonderful opportunity to write a post for my dear friend Jacy's AMAZING blog: My Name is Jacy!! 

Since I started blogging, I have this delicious new habit of blog-hopping. I actually found Jacy through a really insightful blog comment I think I read on A BLOG ABOUT LOVE...I think, but it doesn't matter because Jacy's blog has become my very favorite one on the planet! It makes me laugh and cry and feel so empowered! Mostly, reading Jacy's blog will make you feel beautiful. She has had more than her fair share of trials and has come out SHINING. Going through some things that would leave most people bitter and distrustful, Jacy is a beacon of hope to anyone regardless of what tragedy has befallen, and she is just such an inspiration! I reached out to her after spending a lot of time on her blog and she reached right back. Its hard to believe I can feel like I have such a dear friend in someone I have never even met in real life! I really hope to meet someday.

After working on a post for her new series..."My Name is..." I am just flooded with love for Brian. I just love him so much. It's easy to get in a rut and get frustrated with our life right now. And when we are frustrated with life, it inevitably spills into our marriage. We have both been down, and probably a little short with each other lately, which is just not like us. We always treat each other very kindly and are always mindful to speak kind words, so these blue moods are really upsetting. But I am once again reminded that our attitudes are completely under our control, and writing this post and working on Brian's still secret anniversary gift have been beautiful reminders of how blessed we are to have the kind of marriage that we do.

I love Brian for so many reasons. Its so beautiful to be married to someone and to learn about the "real" them! So here are just a few of the reasons why I love him!

1. He seems serious, but really he is a goofball. This picture was taken before he got so good at hiding it. There is other, more recent evidence, however, I would get in BIG trouble if I posted it!

***UPDATE*** I just got PERMISSION to post the following picture!

2.  Brian really loves music. I know he gets this from his grandparents. Mostly Grandpa Johnson. Here he is practicing piano. He still does for a few hours every week. I love listening to him and I am proud of his progress. He hasn't ever taken lessons, but he is learning and he sounds so great!

3.  Brian is really romantic. I will say that in the hustle and bustle, as well as the comfort of married life, we have to make concious efforts to keep the "flame" in our marriage, but we both try a lot. The small and simple gestures mean the most.

4. Then there is the one thing that simultaneously inspires and infuriates me. He is THE most selfless person I have ever known. He would do anything for you regardless of whether he has known you for a moment or a lifetime. I really sincerely love that quality in my husband. He shows me a Christ like example of charity each and every day. The infuriating part is that people find it very easy to take advantage of this...and they do, but it is such an integral part of his character that I don't think people even notice they are doing it. At least I sure hope they don't.

Sometimes it is really nice to take a moment and be grateful for life and all of the craziness it entails. I am so thankful to be with Brian. I am so happy that we chose to be together. I love being his wife and taking care of him.

Love, Lindsey

Some good news...finally!

Do you ever wonder if you are on the right path in life? Or how to tell if you are? I do. I usually find myself bouncing back and forth between two different thought processes when facing a trial. I either feel like "nothing worth anything is easy, so because  this situation is hard, I must be on the right track." Or, I feel like "this is SO hard, maybe I should take that as I sign that I am not on the right track and reevaluate my plan."  Often times the only way I can make a decision is to pray and wait for an impression on what I should do.  Amazingly, last week, that signal came loud and clear that nursing school is definititely what I should be pursuing. We found out that I am the recipient of a $3000 scholarship for school! This is such a huge blessing. Not that I ever doubted that it was a good idea, but things have been so stressful this semester. I found out that I got a C in my anatomy class and that was a huge disappointment. And while people have been very encouraging, I also know what a strenuous and huge committment any nursing program is and I have been praying for the strength to thrive in my studies.

Brian hasn't been able to get back to work yet since he had the second seizure, and it looks like he will be off for at least three more months pending his next MRI result. We were going to make it work with school, but its expensive. Interest rates on student loans just doubled so I really hated the prospect of taking out any more loans. Now, I don't even need to. Since I have finished all of my prerequisites, I only have nursing classes left and so my course load is a little lighter, at least this first year, and the scholarship should cover nearly all of my expenses.

I am so grateful for this blessing. It helps to confirm that nursing school is the right thing for me to be pursuing, and also strenthens my testimony that when you do your very best to keep the commandments, God is better able to bless you.

The BEST news of all came at Brian's follow up appointment. He had his three month MRI last week and we got the results today that the tumor is completely gone as far as we can tell with no regrowth, and everything looks stable. Of course the MRI can't show us what is going on at the cellular level, but it would show if there was even a clump of cells and there isn't. As a matter of fact, there is actually a little hole in Brian's brain where the tumor was. Evidently some brain tumors are completely separate from brain tissue so when they are removed, whatever part of the brain they were pressing on can just sort of 'bounce' back. Brian's cancer cells, however, actually invade healthy brain cells, changing brain into tumor which is a little scary. Anyway, for now it is gone!! That is something to celebrate. As irrational as it was, I did have the fear that the second seizure was caused by another tumor somewhere, or that maybe it had come back already, but for now those fears are assuaged.

The boys are downstairs playing a round of Axis and Allies. I have to get a picture of that serious game board for you. I have strict instructions not to touch any of the five thousand little plastic pieces. This is very serious business in our house.

Matt with his game face on. Axis and Allies is happening.

 This snake was on our step today! It was about four or five feet long.

This is Matt snake wrangling.

I am thankful to finally be able to post some good news. And some exciting times at the Johnson household. It has been great to have Matt home with us. I never do the dishes alone when he is here. Tonight we had a long geneology discussion over the dishes and it made my least favorite chore go a lot faster. And Brian's spirits are up with the help and companionship of his brother. I finally feel like things are starting to settle down and I am so looking forward to a nice relaxing summer!

Love, Lindsey

Continue in patience...

We were lucky enough to spend some time with Brian's sister Adrianne and her husband Chris and their two sweeties, Audrey and Geoff this week. We hadn't met Geoff yet and he is already eight months old. What a cute and joyful baby he was in spite of deciding to cut FOUR teeth this week! Audrey has SUCH a personality. She was still very small the last time we saw her in July of 2010. She spent much of the time at our house listening to Brian play "Once Upon a Dream" on the piano and singing princess songs to us. At one point she made Chris dance with her while Brian played and as they were dancing she asked, "Daddy, what does Master Yoda say?!" A girl after my own heart! She loves princesses AND science fiction! All week she was doing Star Wars lines. She has also decided that once she recognizes that you belong to a couple (ex: me and Brian) she wants the couple together at all times. One day I was working so the whole time I was away she was asking Brian when I was coming. And whenever Brian left the room, she was asking me what he was doing. So cute!

Chris and Brian and I also had some intense Star Wars and Lord of the Rings Trivial Pursuit matches, both of which Chris won. There will be a rematch. Their time here was far too short and I am missing them already.

I was really glad to have the company and time to cuddle the babies because this week has been particularly difficult for us.  After we got married, we thought we would wait a little while before trying to get pregnant, but very shortly after, we decided we actually wanted to go ahead and start trying so in September 2010 we did.  We tried for a whole year and in September of 2011, I finally got pregnant, but I miscarried six and a half weeks later. Even though it was an early miscarriage, it was devastating to us because we had tried for so long and were so ready for a baby.  We waited three months until we could try again and the first month we didn't get pregnant so I made an appointment to talk to my doctor. We were going to try clomid for a few cycles.  Incidentally, that appointment was on the Thursday that Brian ended up having surgery so of course it was cancelled.

Brian's chemo was delayed because of his doctor's office not arranging the very expensive drug with his insurance. After two and a half weeks he called and finally, we had the Temodar on our doorstep four days later.  During the delay, I took an old ovulation test I had lying around and was astounded to see the little smiley face! I was ovulating that day! I had totally lost track of my cycle in the last six weeks since Brian's seizure and surgery so I didn't even realize it. I was sure it was an answer to our prayers and that was reason for the delay in chemotherapy and that maybe I would be able to get pregnant after all. We tried one last time and then just prayed and prayed for two weeks, but this week I started my period.  I can't describe how sad I am. I am not a good enough writer, nor do I have the energy to express my total devastation over this. I am trying not to lose hope, but that was our last chance for a whole year.

As long as Brian is on chemo we have to be very careful NOT to get pregnant because the drug is teratogenic to sperm, meaning that even if I could conceive, there is a high risk of birth defects if I didn't have another miscarriage. As a matter of fact, I can't even be exposed to the chemo through body fluids so we have to be extra, extra careful.

I am still worried about my chances of conceiving even after chemo because we have already had so much trouble. Brian asked about adoption because we always thought that would be a good alternative in case we couldn't have our own baby. So to ease my mind I looked up a couple of different agencies on line. One through our church and then through Catholic Charities. That was a bad idea. We meet all of the requirements except, you need to have a reasonable life expectancy. What is a reasonable life expectancy?! We have the whole rest of our lives, but with something as uncertain as brain cancer, who knows if that would be considered long enough. It doesn't seem right that that could prevent us from adopting. I understand that they want the child to have healthy parents, but I wish it were enough that I am healthy and Brian is healthy right now. I know adoption talk is putting the cart before the horse and we still have time to conceive naturally after chemo, but I am so stressed about it.

I can't even believe how unfair life is. Already, I feel pressed for time. I feel like every moment I am away from Brian is a waste. Someday when I don't have him I feel like I will regret all of these moments I wasn't with him. I want us to have a normal life. I am so envious of friends who are house hunting or pregnant, or trying to become pregnant, or the ones who have beautiful, perfect new babies. We were working toward all of those things just a few short weeks ago and now I feel like I have been robbed of all of that. I feel like my world has been knocked, violently, from its axis.

All of this being said, I still have faith that God loves us and has a plan for us. I am just so frustrated right now that I don't have the slightest inkling of what that plan could possibly be, and how on Earth it could be the best for us. But I know the Lord doesn't want me to be frustrated and angry. I know I need to continue to be patient.

"patience is not passive resignation, nor is it failing to act because of our fears. Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well!"

I found that quote in a talk from conference two years ago. If you struggle with being patient like I do, you can read the rest of the talk here. It helped me a lot today. I don't want to just endure this trial, I want to endure it well. And I think I can.

Love, Lindsey

Chemo, stress, and (dog) cookies

My name is Lindsey and I am stress eater. I have gained about five pounds in the almost two months since Brian was in the hospital. Its funny because my eating inversely correlates with my stress level. The more stressed I am, the less I eat. On my mild to moderate stress days, I eat my feelings. When I am extremely stressed, I lose my appetite.

All this had me thinking about my poor, sweet, neurotic Jack.  He is stressed too. I know he can sense the tension in the house from my nerves. I feel bad for him because he doesn't get to eat all the comfort food we do. So, to remedy that, I found a recipe for homemade dog cookies! I spent a couple hours today making yummy and cute cookies all for Jack, except for the ones he shared with his dog friends. The recipe was really easy, just a little all-purpose flour, whole wheat flour, vegetable oil, water, and PEANUT BUTTER!!! which made them smell so good that I actually ate one. They basically turned out like you would imagine an eggless, butterless, sugarless peanut butter cookie, but they were fabulous and much appreciated by my faithful companion (the canine one).

As for my other one, Brian started chemo on Monday and is finishing up month one tonight. We are so grateful for the minimal side effects! He takes an anti-nausea medicine first and then the three chemo pills. Those smell and taste nasty. Then we go to bed so he really hasn't been sick to his stomach at all. He does have a headache from it, and he has had a KILLER back ache for two days straight. If it persists over the weekend I am calling the doctor Monday, but I haven't seen that symptom listed in the literature anywhere so hopefully its just a pulled muscle.

More to come tomorrow! We are heading up to Chicago to see the CSO. My family got us tickets for Christmas and I am glad we can still go!

Here are some pictures of Jack with his cookies.

I don't know if you can read the angst on this face.

A very patient boy. 

Love, Lindsey