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.

 

 

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