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~