Well, it's been 7 weeks, and we are less most of a brain tumor, through a hurricane, 9 days without power and chugged on through heads colds for all four of us. I know I'm long (looooooooong) overdue with this post, but the past 7 weeks have been a very strange time in our lives and I just wasn't ready to dive into this.
I'm ecstatic to report that Kenny's awake craniotomy was a success. Dr. Tabar, whom initially felt she would only be able to remove about 50% of the tumor without affecting Kenny's ability to speak, was able to remove closer to 90+%. I thought about writing a detailed account of the day of the surgery, but when I started, I realized I was mostly writing about waiting...and watching...and waiting more...and watching more. I'll save you the time and tell you what you already assume...it was a long and exhausting day. We (Kenny's family and I) had a little entourage in the waiting area including Kenny's grandparents, his best friend, Danny, and my mom and brother. They called in the early afternoon to say they might be wrapping up soon, only to call 20 minutes later to say they were going back in; this made me happy since I knew it meant they were going to resect more of the egg sized ninja in Kenny's head. Finally, at almost 4 pm, we met with Dr. Tabar; the receptionist placed us in a small conference room where we waited about 10 minutes- those 10 minutes probably felt the longest of all the waiting we'd done all day. We stared at the door, waiting for our first glimpse of the surgeon's face, hoping to read some kind of positivity. We were lucky enough that she walked in beaming...she proceeded to tell us she was able to get much more than she'd anticipated, and that Kenny did great. She heard all about our wedding while he was awake during surgery (which she said with a sheepish grin...I'd LOVE to know what he told her hahaha), and that the sample of the tumor they looked at was, indeed, low grade (we didn't get the full pathology back for 3 weeks, which also came back low grade thank God!). It took all (and I mean ALL) of my will power not to jump up and hug her; after she stepped out, we hugged, we cried, we hugged some more, and cried some more. It was everything we'd hoped for since finding out about the tumor. We went to the sitting area to let my family, Kenny's grandparents and Danny know the good news...where we hugged some more, cried some more (you get the gist).
Here's where things get a little dodgy for me...while I was wholly prepared to face a long, tough day for the surgery, I was wholly unprepared for the days following, which were far longer for me than that first day. I hadn't realized how hard it would be to see Kenny in such a vulnerable state. While he was able to speak and move the day of the surgery, by the time we got there the morning after, his speech was mostly gone. He could say "yeah" and give some one word answers, but it was a struggle for him. By late afternoon the day after the surgery, he also lost all movement in his right arm and hand. They had warned us that this was a possibility, but no one was really expecting it since he'd seemed so well the day of the surgery. Those 6 days at Sloan post surgery felt like months. By the time we went home (the following Tuesday), Kenny could speak (albeit slowly) in small phrases. Two days later, he had a seizure at "home" (his parent's house), where he lost his speech again for an hour after, but the CT they did showed no brain bleed or other issues, so they sent us on our way. While I'm sure I could go into massive amounts of detail right now, I just can't...I'm really not ready to share everything I was feeling and thinking. You wouldn't think that something that will (hopefully) end up to something so positive in our lives in the long run would be so hard to talk about (especially for someone like me), but I wouldn't relive those few weeks for any amount of money.
Since then has been a completely bizarre journey of trying to re-learn how to live. Every two weeks he seems light years ahead of where he'd been before. We had planned to move home around Halloween, but Hurricane Sandy threw a bit of a wrench into those plans. When we finally got power back, we jumped at the chance to move back into our house. We hadn't been on our own since the beginning of August; and the best I can describe it is the first night of college...you're terrified, you're ecstatic, you don't know what the hell to do with yourself. It's been about a week and a half now, and it feels more "normal" every day. We still have a long road ahead of figuring things out...he can't drive until next Fall, and our kids are too small to leave home with him, so time alone (for me) is going to be non-existent for a while. My anxiety has been through the roof; I don't sleep very well (which you can probably tell if you see me, by the lovely bags under my eyes), always afraid that he's not getting enough sleep. I ask him constantly if he remembered to take his medicine or how he's feeling, and I'm pretty sure I'm driving him up a wall. I'm trying to tone it down, but I think it's just going to take time for me to feel comfortable again. I'm also trying to cut myself some slack...it's only been 7 weeks since his surgery, and to say it's been an adrenaline fueled 4 months would be an understatement.
I've learned over the years that there are things in life I can control, and things I can't; this has been a huge struggle for me, but this year, it really "clicked." I'm still very anxious, and that's something I'll probably contend with the rest of my life, but I really and truly "get it" now. I've always been a reflective "I wish" kind of girl. Even from a young age, I'd rake over events of my life and say I wish I could change them. When I was 9, I had a cousin I adored very much pass away; I was devastated, and for at least two years I thought if I wished hard enough I could undo it- I even daydreamed about being able to invent a time machine so I could go back and save his life. As an adult, my "I wish" turned into wishing I could have changed my father, wishing I could change my whole history. I thought how different my life could have been if he'd been "normal." I spent so much time and energy wishing away bad things that had already happened. When I had Cam, it escalated to having PP OCD, where I'd obsess over any which way something bad might happen to her. It drove me mad for 6 months, until I sought help for it. I learned some great coping mechanisms from that, which was helpful, but it didn't ever totally go away. Then this...
Yeah, this sucked. BUT (and if I could make that BUT even bigger, I would), I learned a lot of things during this gut wrenching process. I'm sure anyone who was reading this before the tumor (B.T. if you will), I'm sure you know that I'm someone who was ever so grateful for my life. I can't call this a life lesson in not taking the good things for granted, because I never did take them for granted. However, I somehow thought that appreciating my fabulous life (well, fabulous according to my standards), meant I was protected from losing it. Learning that wasn't the case was hard for me...I felt angry. What about all those people out there with amazing lives that bitch and moan CONSTANTLY? I can't tell you how many people on Facebook spend their days whining because their boyfriends are annoying them or because they don't have boyfriends or because they just don't feel like going to work or taking care of their kids. It made me irate that so many people don't appreciate what they have, and I do, and this still happened. I'm actually embarrassed to admit that; but sometimes, when shit hits the fan, not all of your reactions are going to be rational. Which brings me to the first lesson I did learn...it's okay to not be perfect, and to lose your shit sometimes, and to react however the hell you need to react. Life isn't a contest of who can maintain their composure the longest...when you die, God isn't going to give me (or anyone) a medal for never breaking down.
For the last couple of weeks, people keep saying to me, "I bet you can't wait for this year to be over." Truthfully, I couldn't really care less if the year is ending or not. Yes, it's true that 2012 was a tough year, but it was also a great year (my little guy was born this year!!). Instead of looking at it was the year Kenny "got" a brain tumor, it's really the year it was discovered, and the year he kicked that sucker out on the street (most if it, anyway). This brings me back to that huge life lesson that has taken me 31 years to "get"- his having had a brain tumor is something I could never have controlled. When I was in therapy with PP OCD, the therapist asked me if I really thought I had that kind of pull with God that he'd be mad and punish me for not washing baby bottles enough times...war and famine all over the world, but Megan didn't wash the baby bottles 3 times? Take the kid away. When Kenny's brain tumor was discovered, I couldn't think of anything so big I'd done wrong to cause it. That's when I realized, my pull was certainly not so big with God that he'd put a brain tumor in there. I know it sounds irrational, if not arrogant, to have thought that way; but unfortunately, it's part of the disorder. If I look back at 2012, I can't say "If I had done X, Y, Z differently, maybe Kenny wouldn't have had that brain tumor..." But I CAN say we did everything we could to help him, and I CAN say that he did his best due diligence in finding a good neurosurgeon. Lesson learned.
Which brings me to the last lesson, and the close of this awesomely long post. Last weekend, Kenny and I celebrated our sixth wedding anniversary. We've been through a lot together- not just since we were married, but since we got together when we were 17. Sometimes its hard to reconcile how you can have some perfect, amazing years, and how some years you trudge through as best you can and just hope to see a light at the end of the tunnel. Last year, we spent our anniversary attending two back to back destination weddings, the high of an already amazing year. This year, we spent a couple of hours trying to reconnect...four months of trying to be parents while living with his parents, planning and executing a neurosurgery doesn't leave much time for a marriage. We've hit bumps in the road before...never this big, but as with all relationships, things ebb and flow. We have years of extreme highs like last year, and years where we put our relationship aside to face bigger things, like this year. It hit me recently how appropriate my blog title has become over the last four months. You can't live a real, full life without the possibility of these bumps in the road. If you want the great things, you gotta be willing to take your lumps along the way. I wouldn't sacrifice the trials set in our path to live a lesser life, any day. It's all apart of living...it's a living thing ;)
With thanksgiving being tomorrow, it's only fitting to once again thank anyone and everyone for your continued thoughts and prayers through this ordeal. We are thankful for so, so much this year. While I'm ALWAYS thankful for my two beautiful babies, I'm especially thankful Benjamin came and helped us find Kenny's brain tumor (being up every 2 hours is what likely set off the grand mal). I'll be forever thankful for Dr. Vivianne Tabar and the staff at Memorial Sloan Kettering who did amazing work and took fabulous care of our family. I'm thankful, more than I can say, that we had the BEST possible outcome...our prayers were truly answered. I'm thankful for the amazingly supportive cast of friends we have, who helped keep us sane, and thankful for all the little things in between....being back in our home, good coffee, our daughter's infectious giggle, our son's beaming smile, and every day our family gets to be together. A very happy thanksgiving to one and all!
