Weeks 2&3 Update

Brian’s surgery went well. The surgeon was able to remove the bulk of the tumor, but a small amount was left behind just because of the area of the brain where it was located. It would have been difficult and hazardous to remove anymore. We received the pathology results and unfortunately, the tumor has progressed to a grade IV which is also known as glioblastoma. It’s the most aggressive form of brain cancer.

Yesterday, Brian’s 37 stitches were removed and he continues to heal well feeling a little bit better each day. Today we met with the neuro oncologist and while we got a lot of information, I feel like I’m left with more questions than ever. I have received many messages and phone calls asking how it went, so I thought I could address the news in a single update.

The results from the genetic workup of the tumor from Mayo Clinic are in. Radiation and Temodar, an oral chemotherapy, are the gold standard for glioblastoma. There are a few prognostic indicators doctors use to give an idea of how well someone will respond to treatment. One of these is MGMT methylation (read more here). In very simple terms, as far as I can understand, MGMT is a repair gene in tumors. Methylation is a chemical change that can occur that interrupts the tumor gene’s ability to repair itself. So, simply put, MGMT methylation is a good predictor of chemo efficacy. You want to be MGMT methylated. Brian’s tumor is unfortunately non-methylated meaning Temodar will be less effective. This was not wholly unexpected as his astrocytoma was resistant to chemo as well. Last time we were concerned with a different chromosomal mutation, and the connection between that mutation (1p19q co-deletion) which he also lacked, is variable, but probably related so I really wasn’t surprised with this news. Tremendously disappointed, but not surprised. It was because of the lack of the 1p19q co-deletion and the insensitivity to Temodar that we decided to do whole brain radiation six years ago at his initial diagnosis. This means he is unable to undergo radiation again so close to his last dose. This has less to do with how it would positively affect the tumor than how it would adversely affect his healthy brain tissue.

So where does this leave us? We can’t do radiation, and due to the non-methylation of MGMT, Temodar probably won’t be as effective.

Brian will still be receiving Temodar because it will still be effective in that it targets the tumor; the tumor cells will just be able to repair themselves faster than they would otherwise. There is an FDA approved wearable device called Optune  that creates an electric field around the tumor to disrupt the growth and reproduction of the cancer cells. Brian would wear electrodes on his scalp that connect to a portable, battery powered electric field generator. Very sci-fi. He would wear the device for at least 18 hours a day and it has been shown to increase survival by an average of 4.6 months, which is a lot when you are dealing with glioblastoma. There are very few side effects aside from the inconvenience of toting around the device everywhere you go.

There are also clinical trials we are looking into. The most interesting of these is oncolytic virotherapy (see here). Because of Brian’s age and overall health, Dr. Geoffroy thinks he would qualify. This is a newish, therapy that uses a virus to hijack and destroy cancer cells. Hypothetically, these viruses then replicate to create new virus cells that keep attacking the cancer cells. Some of the phase I trials have been promising.

We see the doctor again in one week and by then he will know if Brian is a candidate for the clinical trial. For now, we are definitely planning on Temodar and likely Optune, but this is a lot to process and Brian is going to think things over and study up for a few days.

I for one, am on information overload and I have a lot of reading I want to do too. There are a lot of decisions to be made and so many things to thoughtfully, and prayerfully consider. Thank you to all of our friends and family for continually reaching out, praying, and helping us to truly know that we are not dealing with this alone.

The Post I Hoped to Never Write...

Two weeks ago today I worked a 3:00 to 11:30pm shift at the hospital. Brian called and left a message because he couldn't find Elliot's pacifier. I tried to call him back but he didn't answer. I tried a further three times throughout my shift, never getting an answer. He had worked the night before, so I just figured he was tired and had gone to bed. When I arrived home at about 12:30am, I was startled to see the front door wide open. All of the downstairs lights were on as was the television. If you know my OCD husband, you will understand my alarm. All I could think was that something happened and they had to leave in a hurry. I ran upstairs to find everyone safe. Brian asked what I was upset about and I told him. He said he had started a movie for he and Ethne to watch and then went upstairs to get Elliot to sleep. He said he must have fallen asleep because he never came back down. Ethne put herself to bed after the movie.

 

I can't remember if it was before or after that night, but Brian also had begun to leave his car door open when he got out. He continued to leave lights on. It was very unsettling to come home and have to shut his car doors for him. He was working a lot of overtime so I just assumed he was exhausted. Of course, brain tumor recurrence always lives at the not quite back of my mind, but he had just undergone a clear MRI in February. There were other indicators though, impulsive decisions while driving, and rapidly increasing fatigue and delayed motor function. It took him forever to put on his shoes for work. Then he got a terrible headache that lasted a few days, and then he started to vomit. All of this happened very quickly so last Friday, just a week ago, I called the oncologist. Monday, they got him in for an MRI, and set up a follow up for Tuesday.

 

The MRI took a long time. The tech called over to the cancer center to speak with his oncologist. Finally, he told Brian he was okay to go home that day. Looking back, I can see how foolish it was of me to keep trying to rationalize all of these little things, but in my gut, I knew something was wrong.

 

Tuesday morning at work, I got a call from Dr. Geoffroy. He told me we needed to see neurosurgery more than we needed to see him and it couldn't wait. The whole world instantly became thick like I was trying to walk through mud. My heart was pounding. I felt sick. I got in the car and Brian called me. I told him I was coming home. Then I called his mom and dad, and my mom.

 

That afternoon we sat across from Dr. Tsung and it felt like no time had passed since we last found ourselves here. Brian has another brain tumor. Right behind where the other one was located and almost as big. Its devastating. I know all the statistics, we have braced ourselves for this news every six months for the past six years, but nothing can prepare you for the sucker punch that cancer is back.

 

Brian will have surgery with intraoperative MRI on Monday. Its been the longest and shortest week. We are taking Ethne to Chicago tomorrow for the symphony and just to spend some time with her. She is worried, I can tell, but she can't understand what is happening. We are trying to keep things as normal as possible for her. This morning she told me she knows what her daddy's head will look like because she saw a picture. I felt a lump in my throat as I remembered that I left the surgery instructions on the kitchen table. I decided to show her a picture of last time after surgery so she won't be afraid.

 

Things feel so different in lots of ways. This time we have our kids. And for them we will be strong. I don't have the luxury of falling apart this time. And I was just starting nursing school last time. This time, I feel confident communicating with the doctors and advocating for Brian. I know what to ask for and how to ask.

 

I don't know if I'm just still a little bit in shock, or what, but I am not as emotional as I was before. Or that isn't right, I am not crying all the time like I did last time. I was a mess. Right now I feel like I am in nurse mode. I just need to get him through surgery and get him home. I am beyond anxious. I haven't slept since Monday. I cannot get my brain to shut off. When its quiet and dark, that's when I struggle. I just listen to Brian's deep breaths next to me and wonder how this can happen again.

Real Talk

It's about to get real actual over here.

It's been some years since I've written anything here. I've started many a post that always goes unpublished. I was reading back over these old pages and thinking how I used this blog for the dual purpose of information and therapy, but mostly therapy. It's only been four years, but I feel like I can barely recognize that woman with all the faith in the world who was learning from her trials and grateful for them even. The irony is, I have very little to complain about compared to those days, but I feel much more vulnerable, emotionally.

Cancer took a toll on my husband most obviously, but also on my me and our family. It still lives in a dark place in the back of my mind and I hope with all I have that that's the only place it ever lives. In my mind, and not my husband's head.

Part of my problem is that I see a lot of people who have things a lot worse off than me and they are rocking life. At least it looks like it. And I am just in this period of existing, not quite living and I feel guilty for being in this rut when almost all of my desires have manifested. Brian is healthy, and I have  found my soulmate in a very strong willed, opinionated daughter, who is nothing like me and just the same in the space of one twirl across the trail of the woods we walk frequently.

Not everything has been perfect. We have been trying to give our daughter a sibling for a little over half her life and I finally conceived only to miscarry again. Everyone tells you it's so common to lose your first like I did, but once your body knows what to do, it won't happen again.

Until it does.

And then they tell you something like 20% of all pregnancies end in miscarriage, that's 1/5. But I don't care. All I care about is that 2/3 of mine end that way. So that's been hard and that's a big part of my sadness, but it isn't all of it.

I only want to journal or blog when things are perfect like the blogs I read, but things aren't ever really perfect. Brian said maybe I should write some things down again. I started my paper journal again, and so I thought maybe I would dust off this old friend too and see how it goes.

I've got to do some coming back to life.

Busy, Happy Times

Its been an embarrassing six whole months since I posted! In a way that feels good because I have been so busy that I haven't felt the need to "write for therapy" like I usually do. On the other hand, I am feeling the panic that comes with not documenting my life. As I have mentioned before, I have a bad memory and a good imagination which means I rewrite the past a lot and its nice to have a record of how things really went ;)

Brian and I are doing well. We are so blessed to have such a loving and happy marriage. I am consciously grateful for him every single day.

I think the biggest news since my last post is that I am 23 weeks pregnant with our sweet baby girl. I can't even begin to describe how this makes me feel, but in some upcoming posts I am going to try.

 

 

Being pregnant is the most miraculous thing I have experienced so far. I feel so happy and overwhelmed with gratitude and love for my baby. I love watching my sweet husband as I grow and this becomes more real for him too. He looks so awestruck when he sees her on an ultrasound or feels her kick when he talks to my belly. I know she has so much to teach us and I feel so honored to get to be her mom. 

 

 

I am also in the craziness of my final year of nursing school. I feel surprisingly calm about it this week. The first week was just about a nightmare, I cried for the first two days and I felt lost and completely unprepared, and I knew my attitude was going to make school nearly impossible. I came home and prayed fervently that my Heavenly Father would help me find my focus again and my prayers were promptly answered. I need to keep up my end of the deal and continually pray and make time for scripture study because that is what is helping me keep things in the most peaceful and beautiful perspective. I am thankful to have compassionate instructors for my first rotation. They really want us to succeed and that helps to build my confidence for my very nerve wracking cardiac rotation that is just around the corner, but like always, I can do hard things!

 



Conference weekend

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I loved the little bird in this picture and the quote about hope. I have read a lot about hope over the past year and I believe its been an integral part of my coping.

This weekend was our stake conference at church. Our church is very organized. I love that. You can read about how the church is organized here. But briefly, its organized geographically into branches, wards, and stakes. We go to Pekin ward, which is part of the Peoria Stake. The leadership of the church is also organized. Some of our ecclesiatical leaders are referred to as general authorities. They have administrative responsibilities and they travel around speaking to congregations. These people are a big deal.

I wanted to briefly explain this because we were vistited by Elder David Baxter this weekend in Peoria. What an edifying experience I had listening to him! He spoke at the adult session of conference on Saturday night, and then again Sunday morning. On Saturday night, we sat and listened intently to him speak about hope in the midst of our trials. He shared some personal stories and gave some great advice with some American jokes tossed in. He is Scottish and he was fun to listen to because of his accent alone! I wish I could remember all of it, but I momentarily forgot everything he said when he turned to sit down and I noticed a very familiar scar on his head. It was nearly identical to Brian's. We left that night, but I really wished I knew what his scar was from. I made up my mind to meet him Sunday morning.

After conference Sunday, I started up to the front while Brian was cleaning up  and I changed my mind! I got nervous and decided I didn't want to introduce myself, but then my sweet friend Susy came up to me and asked if I noticed the scar. I said I did and I wanted to ask about it, but I didn't know if I should. She said "you should!" So with that, my courage was renewed and I went to stand in line. When I got up to the stand I shook Elder Baxter's hand and I introduced myself. I told him I very much enjoyed his talk from the night before and I just wondered if I could ask him a personal question. He said of course and I asked where he got his scar. He told me he had two cancerous brain tumors removed. I told him my husband had a very similar scar and he asked if my husband was the one who gave the opening prayer on Saturday, which he did. He said he noticed Brian's scar too, but didn't get a chance to talk to him about it.

Then we had a brief chat and I told him how afraid I was with Brian sick. He said he has always felt so much worse for his wife because as wives, we bear the burden of the stress. He said, "I just had surgery, took a lot of medicine, and slept a lot! She has done everything." Brian has said a very similar thing to me.

Then I had to ask when he got sick. My heart did sink a little when he told me it was just two and a half years ago. I so wanted him to tell me it was 25 years ago when he was Brian's age and he had surgery and did chemo and radiation and it still hasn't come back. My eyes began to well up with tears when I heard how recent it was, and I told him we just passed the one year mark. He asked how Brian was doing and I told him he is doing really well, and then he took my hand and said that we have his love and blessings.

I feel so grateful to have met and listened to this man. When he talks about overcoming sadness, trials, and depression, I believe him. He knows just what we are going through. So if he can find hope, so can I. It made such a difference for me. I felt very inspired.

Another thing I took from this conference was that oftentimes, we judge ourselves the very harshest. When we put ourselves on trial, we give much of our energy to the prosecution, but we must always be sure to listen to the defense. We have to strive to see the good in ourselves too, the victories both large and small. I struggle with this, so it was a great reminder.

I love conference weekends because I get to see church friends from all over that I don't get to see every Sunday. Its great to see how full the building is and you can really feel the spirit when everyone is together. A common theme of this conference was that God knows each of us personally and is mindful of us in our trials. I truly feel like this conference was for me and Elder Baxter was sent here just to help renew my faith that I have a Heavenly Father who is deeply concerned for me.  What a great reminder for all of us.

Love, Lindsey

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.

 

Simple Prayers

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I haven't felt like praying at all lately. I feel bad about it, but I just can't get motivated. I know God is aware of me though, even when I'm not talking to Him. This was evidenced to me in some simple, but profound ways this week.

Firstly, we had a visit from some friends from church the other night. I wasn't in the mood for company. I had a long clinical day and I had a two exams to study for. I decided to stress-bake some bread sticks so I could stress-eat some carbs while I waited for our company. I was listening of course to Coast to Coast like I always do in the kitchen and guest was talking about the power of prayer. He said he realized that he had been praying wrong his whole life. He always prayed a little selfishly for things that he wanted. He never asked what is was that God might want of him. Once he changed this behavior, he started getting answers.

Within a half hour, our company was here and the message they brought was about....you guessed it, prayer, and how God hears and answers our prayers. They even talked about praying for what we can do for God instead of just the things we want or need.

It has been my experience that when "coincidences" like that happen, its like a little text message from God that we should pay attention to.

Wednesday started off rough. I needed gas and when I got to the gas station, I realized I left my debit card at home so I had to go all the way back and get it. Then, since I had two exams that day, I decided I really needed all 18 grams of fat contained in a Little Debbie "gas station brownie" so I indulged. Breakfast of champions. I was downing it on the way to work and I bit down on something hard. Really hard. Gross. I didn't know what to do. I wanted to spit it out so badly, but I was in my new, good smelling car and I didn't want to risk a mess so I just swallowed really fast. I decided to tell myself that it was just a piece of walnut shell. Please let it just have been a piece of a walnut shell because I don't know what else it could have been and it makes me gag to think about it.

I arrived safely at school and as I was walking up the stairs trying to work off the 18 grams of fat from the crunchy brownie, I slipped and almost totally bit the dust. Thankfully, I caught myself.

As I sat down in class, the first good thing happened. I got a text from a friend I used to work with which just read, "Smile! Today will be a good day!" I did smile and I enjoyed the randomness of that text from a friend who had no idea how rocky my day started out.

My first test was hard. Like I got a C hard >.< Ouch. I was so flustered that I couldn't even study for my next test during my break. I was really stressing out about it. Once I got to the classroom, I sat down and put my head down on my desk and said a very simple prayer,

"Heavenly Father, I know I haven't been talking to you very much lately at all, and I know I don't really deserve it because I barely studied, but please, somehow, let me do okay on this test."

Our instructor walked in a minute later with the tests in hand and informed us that this test would be OPEN BOOK!!!!

Really quick:

"Wow, God, that was fast! Thank you, thank you, thank you!"

I think he knows and understands the heaviness of my heart right now. I think he gave me a little break with that one. Sometimes you need those instant gratification answers just because you do. I am really very thankful for the little blessings sprinkled throughout my stressful day.

Love,
Lindsey

Welcome 2013, glad you made it!



The anniversary of Brian's first seizure is coming up in a mere two weeks on Valentine's Day. I cannot believe its been a whole year since our life was turned upside down.

I have taken a very long break from blogging for several reasons. Mostly because I haven't felt like I have anything positive to share. I am depressed. 2012 was by far the worst year of my life. It just refused to get any better. It got worse and worse, culminating in our ride home from Virginia on New Year's Eve when I was the sickest I have been in a long time. Good Riddance 2012! There have been many struggles both public and private. I feel worn out and even a little bit bitter. My faith has been challenged in ways I couldn't  have imagined. I feel in many ways like I am being tested, and that I am being set up to fail.

By nature I am comfortable with melancholia. I like to listen to sad songs and watch movies that make me cry. I like to be alone a lot. But I do work hard to keep a positive attitude. I believe its very important to remember that happiness is a decision and an important one.

I decided that 2012 will remain the worst year of my life. I never want to have another one. 2013 is going to be a year of renewal for me. I am looking for ways to reclaim my joy. Its difficult to even write this because right now, I feel like I have a very long way to go and I am tired. And while my heart tells me that I may have more difficult years ahead, I don't want to revisit some of the dark places I have been in the past year. I want to learn to face my trials with faith and grace that I lack in this moment.

I am realizing that I am grieving the life I thought I would have, but that doesn't mean that I can't find hope and happiness in the life that I am living. I read a wonderful story the other day called The Refining Fire of Grief. There was an especially poignant analogy about a couple who's son suffered from a seizure disorder. One night, after they had put him to bed, they sat together in the other room watching him on the monitor. The husband remarked that he bet the baby felt totally abandoned all alone in the dark room. He didn't know his parents were just in the other room keeping a keen eye on him. And so it is with our Heavenly Father.

This passage from the article really resonates with me:

"When our days become dreary with low hovering clouds and our nights become darker than a thousand midnights, let us remember that … [God] is able to make a way out of no way, and transform dark yesterdays into bright tomorrows."

This thought reminded me that I could hope for a bright tomorrow without denying the darkness of today. I could keep my faith in God and hope for a happier future while allowing myself to grieve in the present.

Because God loved me and desired my progress, He would not spare me the refining fire of grief. But God made a way where there was no way. Not every loss can be healed in this life, but lives broken by grief can be healed. Because I remained close to God even when I could not see or hear Him, I felt Him when He reached out to me in my darkest night."

Some days I feel guilty like I have lost my faith if I give in to grief, but we are allowed to grieve as a way of increasing our faith, not giving up on it. Sometimes it is how we grow.

So, I have some ways that I plan on healing myself this year mentally, physically, and spiritually. First of all, I will always keep everyone updated on Brian's status, but I am getting out of the cancer rut. Brian is, for all intents and purposes, cancer free! His MRI's continue to remain stable and even show improvements from surgery which was an unexpected blessing. He is fully functioning, his memory is intact, he is able to work and serve others exhaustively to the point that I am moderately certain people are finding it easy to forget he is sick. His hair is coming back, and it matches the rest of his head! Thank goodness, no half curly/half straight like he feared. He has told me several times to quit making this blog all about cancer and talk about some other, more interesting things that don't make me depressed. So I am working on that idea.

I do believe that once your life is touched  by cancer, it never leaves your mind. So, I am going to find positive ways to channel those thoughts and feelings.

Physically, I want to start taking better care of myself. Last year, I started running. "Do it for two consecutive weeks," they said..."you will get addicted and love it," they said. Everyone who said that lied. So maybe I never did it for two weeks straight, but I KNOW I started and stopped at least fourteen times and guess what...still hate it. As a matter of fact, there is only one thing I hate more than running and that is brain cancer SO....I decided to run a 5K in June to support brain tumor research! I think my mom is even going to do it with me. I am excited but I definitely need my friends and family to hold me accountable. Because I really, really hate running. A lot.

I will be registering a team in the next few weeks so I will be sure to update.

I know that I can get out of this funk and as always, I am supremely grateful to our friends and family who have offered so much support over this last most difficult year of our lives together. I really don't know where I would be without the kindness of the ones we love.

Love,
Lindsey

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

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!

image credit

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

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.



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

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.