Sleepless Nights
Warning: This post is raw. It's emotional. It's not about Bryan or his tumor or any doctor appointments. It's about me. It's about the "caregiver," who is wide awake and terrified at 3am. If you're not up for reading anything other than 100% "positive" posts, then I suggest skipping it. But the unfortunate reality is that it's real and this is what I – as the "other half" – am going through.
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The nights are the worst. Not for Bryan, as he's sleeping soundly in the other room. He's in dreamland, breathing softly and resting well. The nights are the worst for me. Usually I sleep pretty well, but tonight, I just can't. Woke up at 1:45am, wide awake and just couldn't go back to sleep. My biggest problem is my mind starts going and well, let's just get to the point: I'm terrified beyond belief.
The days are great because they're action-packed and I can control what we're doing. I can "help" in some way. I can drive Bryan to appointments. I can hold his hand so he's steady while he walks and goes up and down stairs. I can pick up prescriptions. I can have lovely conversations with the radiation nurses and techs and other patients about anything and everything. I can call or email someone if I need to talk. I can read the hundreds of emails we get on a weekly basis.
The nights are different. They're quiet. They're dark. There's no one to call or email because the world is asleep. And quite frankly, as much as I shouldn't, the sleepless nights are the times I sit and wonder about what the next few years of Bryan's and my life together will bring.
It's funny, Bryan was so nervous about starting his six-week treatment of chemo and radiation. It makes perfect sense. I was nervous, too, but more excited that we had a course of treatment and more importantly, we were starting it. There was action. Now that we're almost done with the course of treatment, I'm the nervous one. Once the wedding and the six-week treatment is over, there won't be anything to do but simply wait. And have MRIs every three-to-six months. I can't control how the MRIs go. I can't control whether the tumor grows or not. I can't control Bryan's symptoms from getting worse. I can only sit and hope and pray that they don't. Slow-growing or not, we're still dealing with a brain tumor. An inoperable brain tumor. In most cases, it's like a ticking time bomb. The terrifying part is that I've learned that radiation is really the only tried-and-true way to temporarily control these things. Beyond that, if surgery isn't an option, the "big gun" chemotherapies – e.g. the chemo IV drips – haven't been proven useful in controlling or shrinking brain tumors. They're still used to try and shrink brain tumors, but it's those chemotherapies that make people sick. Horribly, horribly sick with side effects worse than the cancer itself. I see it everyday in the radiation center. Bryan and I are so lucky that he has the course of treatment that he does, because the alternative is simply horrifying.
The side effects of the radiation, primarily being fatigue, are easy to deal with. The side effects of the chemo pills, primarily constipation, are easy to deal with. But after this round is over, the waiting will not be easy to deal with. While I've never been a particularly patient person, when it comes to the person you love more than anything in the world, you'll be patient until the end of the earth. When I was younger, I used to jump ahead in books to see how stories ended. I used to sneak out on Christmas Eve and open (and then re-wrap) my presents so I knew what I would be getting. But I understand now, as I've gotten older, that it's about the journey, not the destination. But right now, it's the unknown voyage that we're on that's freaking me out the most. Trust me, I understand that Bryan and I are so lucky that we have the perspective to make every moment matter. But I'll be really, shockingly honest here: I'm just terrified about the number of moments we have together. It is 50 more years worth of moments? Or is it 3 years? Not being able to solve that equation makes my entire body hurt.
As we've said in previous posts, we've gotten a lot of emails from people with different types of brain tumors. We have responded to some and not responded to others, mainly because I'm (I actually think this applies to both of us) not ready to hear anything scary or bad. I firmly believe that Bryan is his own unique individual, with every chance in the world to succeed in treatment. But there are no guarantees.
I've been emailing back and forth with a woman from Texas, whose husband of 15 years was diagnosed with a GBM Stage 4 in November 2007 (only a year and a half ago). They're in their late 30's or early 40's, from what I can gather. For those not "in the know" about brain tumors (lucky, lucky you), that's a glioblastoma multiforme. It's one of the absolute worst brain tumors you can have. Add to that the fact that it's stage 4 and you've got serious trouble. Brain tumors come in three stages: Stage 2 (slow growing/less aggressive), Stage 3, (more aggressive), and Stage 4 (fast growing/very aggressive). Bryan's tumor, for comparison, is a slow-growing, Stage 2, low-grade glioma. Still very scary, but not nearly as scary as a GBM Stage 4.
This wonderful, wonderful woman (stronger than I'll ever be) started a blog detailing her journey with her husband's tumor. Yesterday afternoon, I made the mistake of reading every single word. It's brilliant. She's brilliant. But now I'm scared shitless because it is literally our exact same story. The only difference being that we're at the beginning and we still don't know our outcome. Bryan's outcome. But after reading, the thoughts that I control every single day and push WAY WAY WAY down – you know, the mortality thoughts – came screaming up to the surface because after 1 year and 8 months, her husband is not doing well. Not at all. In one of her emails to me, she said that the thing she regrets the most is not traveling with her husband during the 12 months after his diagnosis, when he was primarily mobile on his own. Now it's too late and they'll most likely never get to realize their dreams of going to places like Australia or Italy. He's now wheelchair-bound and has a hard time speaking and eating. He's on various types of "big gun" chemotherapies, which make him very sick. He's lost all his hair. He has a hard time breathing and has constant chest x-rays to check for pneumonia. He was just in the hospital for several days and truly makes Bryan's few doctors' appointments and 12 pills per day regime look like "An Idiot's Guide to Cancer."
Here's where I start to cry.
I'm 29 years old. I will be 30 next Friday, the same weekend as my bachelorette party. Bryan and I are getting married in 29 days. He is undoubtedly the love of my life. Not a lot of people ever get to say that they met theirs, but we did. We knew it within two weeks of meeting each other. And this is the time of our lives where we are supposed to START the rest of our lives. To create our home, our family, our future. All of our closest friends are married and most are starting to have adorable little babies. Just the cutest, happy families. I saw a picture on Facebook earlier today of some of our friends at a lake over the weekend, and they had taken a group shot of each couple with their (give or take) six-month-old babies. It literally brought tears to my eyes because I don't know if we'll ever get to have that. It's what Bryan and I want more than anything in life; to have a wonderful family and live until we're 85 years old. To raise our kids and create amazing memories with our incredible parents, siblings and friends. To come home every night to each other, after a long (or even not-so-long) day of work, open a bottle of wine and just enjoy each other's company and inevitable laughter. To take trips with our friends, have dinner parties and relish in the comfort and joy that is being with our closet friends on a random Saturday night. To not only have children, but to watch our babies' first steps, first words, first Christmas, first day of school, first break-up. To watch the wrinkles start to appear on each other's faces over the years and still love each and every new line.
I can't let myself imagine Bryan getting sick. Like really sick. He's the most joyous, balanced, full-of-life person I've ever known. Just seeing him go through these "symptoms" is really hard, because there is nothing I can do. Bryan makes me a better person by just being around him. He's my best friend in all the world and we literally read each other's minds; we've got a connection where we don't have to say anything at all. We know what the other person is thinking 100% of the time. It's pretty crazy, actually. To imagine my life, or our families' or friends' lives without Bryan, is unacceptable to me. But the reality of this situation is that the risk is there. We're so aware of our time together now because, just as it is in anyone's life, you never know how much time you've got.
This is why the nights are so bad for me. I'm alone and I'm scared. I don't know what the next few years are going to bring. We've seen both sides of the spectrum: the woman who, after 8 years, if thriving with Bryan's same type of tumor. And the other side: the woman in Texas whose husband probably won't be around much longer.
I don't know how to end this other than by saying a lot of people, bless their hearts, don't get it. And I pray that they never do. That they stay in naive bliss and the worst thing they have to deal with is a broken bone or the flu. That they never have to be up at 3am (now 4am), crying on their couch, wondering whether or not their husband or wife will be okay after radiation and chemotherapy. Wondering if they will be alive in two years. Four years. Eight years. Wondering if they'll get to have children and watch them grow. Or, on the flip side, wondering if they will have to start their life over, devastated and all alone.
That's the part you don't want to hear. Trust me, I don't want to hear it or think it, either. All I can do it keep praying that everything will turn out fine. Keep fighting this SOB tumor and keep our love and faith strong, the way that we do every day, all day long. That's the easy part.
It's just the nights that get me.
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