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