Hello and happy weekend! I'm trying my best to be in a good mood today. I have to admit, I've been struggling with post-holiday winter blues; and my kids are both sick every other day and there are crazy people out there trying to kill everyone, blues (but seriously, the cold weather and lack of sun aren't helping). I'm someone who would be a good candidate to move to a warmer climate (for serious), because I become terribly depressed in the winter here in blustery NJ. It's true, I've had a lot go on since August of last year (and it hasn't slowed much, but morphed into an every day kind of panic instead of a "focused on one event" kind of panic), but this really does happen to me every year (small children and brain tumors aside). Between the crazies and the widespread flu going on, it's truly a wonder I ever leave the house...it's so bad that when I drop Cam at school, I get a pit in my stomach that doesn't ease until I pick her up and see that she's safe. Sad but true, this is the world I'm raising my babies in.
However, I have to say, I'm beyond sick of feeling like a Debbie Downer. Usually, I let myself walk around with the proverbial "wah wah wahhhhh" bubble over my head until Spring, and then get to being my chipper self again; but this year, after everything, the last thing I want to feel is down (if I can help it). It's hard enough, since I feel overwhelmed a lot of the time (it's getting better, but I'd still love to find some time in my schedule to do things like go to the gym or join a yoga class on a regular basis), but I'm determined. Why now? Well, there's the obvious (duh), and then there's that I've noticed my blah attitude rubbing off on my little girl. My anxiety/ocd has her terrified of germs (both receiving them and giving them to her friends), and that's something I really didn't want to happen. When I started therapy (when Cam was Ben's age, 6 months old), the hubby and I discussed how I needed to get better because I didn't want this kind of thing rubbing off on her when she was old enough to notice. Well, that time has arrived. And I've made my little girl a worry wart. The problem being I don't know if she's innately anxious (like me), or if I made her that way, or if it's somewhere in between. She's obsessed with an episode of Yo Gabba Gabba that talks about germs, and plays a scene over and over where little ugly germs sing about making kids sick. I'm not really sure what to do with this, now- I've tried toning back my germ talk. I've tried fibbing (although every other parenting story says not to fib to your kids), and telling her "other" reasons we shouldn't put our hands in our mouths all the time or shouldn't pick our noses and touch our friends...but I think the damage is done (at least for this winter). I'm going to keep my fingers crossed that spring comes sooner than later and I can undo some it (and somehow divert her from that episode of YGG...).
As for my own self, that might be more of a battle. I get irrationally angry at other people for not being more "responsible" (I put that in quotes since I know I might be bordering on unreasonable about it). They send their kids to school sick (like fever and green snot and exhausted sick). They don't use hygiene let alone teach their kids to wash their hands. They go out in public (when they don't need to) when they have the flu. I could go on (and on...and on...) but I won't. There was a mom at one of Cam's dance classes who was letting her 10 month old chew on her older daughter's sneaker (her very, very dirty, been walking on the ground for like 5 months sneaker). I know I can be extreme in the other direction but jeeze. But I have to try to tone it back...if not for my own sanity, for the sanity of my kids.
In the mean time, making me less anxious and a bit happier is one of the steps to helping her feel less anxious and happier. I am going to continue to try to find blocks of time to find things I enjoy (and that I found meditative, like working out), but for now, I'm going to have to settle for five minute strips to enjoy the little things. A hot cup of coffee, my favorite song on the radio, getting to see my kids play together...all the wonderful little things that make the effort worth it. Hopefully, some extra smiles and talking more about nail polish colors (I just painted her nails this morning- it should last a good 3 hours...) and less about the flu will have her singing about more about sunshine and wheels on the bus than tiny, ugly germs. Wish us luck!
It's a living thing...
Sunday, January 27, 2013
Tuesday, January 8, 2013
I'm baaaaaack! New Year and a "motherlode" of goals!
It's been 3 (yes, THREE!) months since Kenny's successful awake craniotomy, but I have to say, it feels much longer. We settled into family life much faster than I had anticipated, and while sometimes I worry that I've lulled myself into a false sense of security, it's a risk I'm willing to take for the time being. What else can I do? My constant worry about every.little.thing. isn't doing anyone any good anyhow. So, instead, I've refocused my efforts into getting our act together in 2013 (which mostly revolves around my kids).
So about two years ago, when I was gearing up to turn 30 (::sigh::, when I was a still spry 29 year old), I started this blog because I wanted to challenge myself to try new things. Cam was a little more than a year old, and she, and life, were generally easy. I tried new recipes, new drinks, went new places and did my best to adhere to "the list." I didn't complete it, but I enjoyed the "challenge" and feeling of accomplishment of some personal goals. At the time, Cam's needs were simple. She needed love, and snuggles, and some attention. Flash forward two years, and obviously things are different now- not only because life has become a bit more complicated, but because we have a second child, too. I don't have time to make 25 ingredient meals or spend hours every day at the gym. I wish I remembered what it was like to go to the movies or even have time (at this point) to take an extra long shower by myself. I guess my point is that two years ago, I had the luxury of my personal goals being, well, personal.
Today? My biggest goals are all mom related (or really, kid related). Not only has Cam hit the terrible 3's with hurricane force, she's had a really tough 6 months, something we only realized recently. In July, our little trio lived a happy-go-lucky, easy existence. We had, earlier in the year, moved her from our room (she slept with us the bulk of her life) and I had weaned her from extended nursing (which I've talked about before). It was tough (or at least it felt tough at the time), but she handled it with gusto. By the second week of August she had a baby brother and slept on a pullout couch at Grandma and Grandpa's house. Kenny and I were constantly disappearing for doctor appointments, and then he was gone (from her world) for the better part of two weeks, where he came home with a big "boo boo" on his head. Of course, when all was well, we moved back home, where she finally felt the effects of being a big sister (since there were no longer 5 adults around all the time).
I know things could have been worse (by far). I know we are incredibly lucky and fortunate and every adjective possible that means "Thank the effing God(s?) above my husband is mostly tumor free and had a rock star recovery." But my girl got lost in the shuffle of getting Ken to where he is now, and now it's her time to get back on track (well, everyone's, but at the moment, she needs the most attention). We did a lot of overcompensating. A lot of TV watching and fruit snacks were had to appease the daughter who we felt we neglected for 3 months, and we created a monster. An angry, clingy, non sleeping monster. I realized at the very tail end of the year that spoiling her was doing no good; not for us and most definitely not for her. That's when we decided 2013 is the year we try our damnedest to get ourselves together. Our end goals are simple...health and happiness. We always say that, don't we? We wish ourselves and everyone a healthy and happy new year? Well, we are putting our money where our mouths are.
Sounds easy, right? Yeah...ok. That's why I'm throwing down the gauntlet (ie. challenging myself to these tasks on my blog so I am shamed into following through). I'll break it down for you: I want my kids happy. I want them healthy. I want me healthy, happy and getting enough "me" time that I don't cringe when I hear Ben stirring or Cam calling for me when I'm two sips into my morning cup of coffee. I want Kenny healthy, and into the best work/life balance possible. I want time with friends, time with our kids, time alone and time to get back to life. We need gym time, playground time, nap time, book time and snuggle time. Things aren't going to be what they used to be, but they can still be great. Obviously this is going to take a lot of baby steps...
To start, we began using a sticker board of every day accomplishments we'd like Cam to achieve, like sleeping by herself, not having accidents in her underwear (she often will wait so long she goes a tiny drop and then tells us she has to go), cleaning up her toys, eating her fruits and vegetables, and not throwing tantrums. The first week felt hopeless, but finally it sank in (and seems to be working at least for a few of the things). We have cut out unnecessary sugar (she was none too happy about the lack of fruit snacks and Gerber snacks), amped up her fruit and veggie intake, reduced her TV time (like by A LOT), and are upping our efforts to get her outside to play more. It's only been a few weeks, but we can see a huge difference in her attitude already. Thank God...it was getting hairy there for a bit. As for Ben, luckily his needs are still pretty minimal. He's still sleeping in our room (the APA recommends babies sleep in the same room as their parents until 6 months of age, I know most people don't really go that long but he's not really interrupting anyone's sleep so we're fine with this), but I do plan to move him to his room in the coming months (something that didn't happen with Cam until she was almost 2.5).
As for Ken and I- he's began what will likely be his work schedule for the foreseeable future (commuting 2 days a week and working from home 3). He's still navigating how to be at his most effective for work while he's at home (I've mentioned before how he genuinely enjoys work and his job, so he really strives to do well- always looking for ways to improve himself); but he says he thinks he's getting there. We've made our bedroom his office; inclusive of a desk facing the window and a new computer on it's way (something about needing a giant monitor so he can have multiple applications open at once...I'm usually doing something domestic like wrangling wiggly kids into their clothes when he's explaining such things). I keep the kids mostly out of his way for the bulk of the day (with the exception of when I need to get dressed), and he enjoys that he gets enough rest and can work late without having to still commute 90+ minutes afterward. The days he goes in are like a treat- since no cars are necessary to get around in NY he feels some independence and gets to be amongst co-worker (ahem, adults- I'd be lying if I said I wasn't moderately jealous on that point...). We are trying to plan some nights out (and one away) so we can start getting time alone to talk about things other than who pooped, who ate, and who bathed (the kids, not us, get your heads out of the gutter).
I, personally, am still pretty much at square 1. Other than a new obsession with Gossip Girl, that Kenny and I watch on Netflix most nights after the kids have gone down, I don't have much (if any) time alone to do things like exercise; but I AM eating better (I actually have all 3 of us solid food eating Courtneys' on an immune boosting diet of lean meats and lots of fruits and veggies). I'll get there, but it's all par for the course with everything. I'm (obviously) trying to find some time to write, but with Kenny still using the family computer most days, until the new work computer arrives I'll settle for whenever I can get. Since I'm fairly certain the gym and I will remain merely acquaintances for the coming few months (until cold and flu season is mostly over and I feel okay putting Ben in their daycare), I'm focusing my personal goals on getting our house/schedules organized and in-sync. By the end of February, I'd like my house to be a well oiled machine. Right now, disaster area is an understatement- but with a little elbow grease and a lot of purging, I think 2 months is a good end goal for getting it looking better and feeling easier to stay on top of. (PS- have I mentioned how ecstatic I am to be talking about normal things??? I could squeal....seriously). I hope to check in again soon!
You know you love me. XOXO,
Gossip Girl. (Sorry, I couldn't help myself!)
Wednesday, November 21, 2012
7 weeks post op: a VERY happy Thanksgiving!
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!
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!
Monday, October 1, 2012
Home just in time to go back...
Mornin' all- I don't have a ton of time today, but I just wanted to write a quick update.
Remember how last week I mentioned that Kenny had been sick all week? His fever had subsided, he was regaining his appetite, but that rash just wouldn't quit. So last week we went to the GP two more times trying to find out what was happening. Through a couple of urine/blood tests, we figured out that his creatinine levels were elevated (that's protein in the blood)- which indicated that his kidneys weren't functioning at their best (at this point they were around a "2"- the highest it should be is 1.3 I think). Finally, Wednesday, he said he felt we should see a nephrologist to have his kidneys checked out -- at this point we'd seen doctors almost every day for a week and a half, and getting tired of adding doctors to the mix. Kenny called his neurosurgeon's assistant and expressed his concerns, and as we still hadn't gotten to the bottom of the rash (and everything that happened the week before), she had us come into Sloan Thursday morning for tests. We met a wonderful GP there who did the exam and scheduled ultrasounds for the kidneys and liver for Friday should we need them (just to make sure we were on the ball since he is scheduled for surgery Wednesday). About an hour after we trekked home from the city they called and said he needed to get back to Sloan to be admitted, because his creatinine levels were now up to 2.9 (so his kidneys were clearly not doing great at that point).
From there was a total roller coaster...with IV hydration, his creatinine levels did start to drop over the first night- not to a totally normal level, but they were definitely coming down. However, once his creatinine dropped, his potassium levels jumped. I'm sure a lot of you don't know a lot about this kind of stuff (I sure didn't before now), but if your potassium levels climb too high, it interferes with the electrical rhythms of the heart. 3.5-5 is normal, 6 is pretty bad, 7 is severe. At one point Kenny's potassium was at a 6.2. So the doctors and nurses did everything they could to help lower that level (I'd go into detail but it'd take a while and I'd probably lose you somewhere in the explanation of how it works). We had some hope on Friday night that the levels were totally normalizing, but early Saturday morning the potassium jumped back up. They did another round of their treatment plan and later Saturday the number had gone back down to 4.7 (phew!). However, at that point, Kenny's anxiety hit the roof, and they could no longer get an IV in or blood out (when you get anxious, your veins constrict). It took 4 hours and the aid of some anti anxiety meds, but they were finally able to get the draw they needed to test his levels and get the IV in. They must have been pretty nervous because a test that usually takes 90 minutes to get back was completed in 20 minutes...and thankfully, the numbers, even without IV fluid, were still down. They ran one more test on Sunday morning to be sure his kidneys were doing their things minus IV intervention (they let him sleep without the IV in overnight), one more EKG to make sure his heart rhythms were normal, and we were on our way. It was a crazy few days, lots of ups and downs and ins and outs, but as I like to say, we're generally pretty fortunate in our misfortune...
The care at Sloan was unlike anything I'd ever seen. His nurses were on top of his every move (and we even knew one of them- we hung out with her a bit down in Manasquan the summer we did the beach house- small world, and VERY comforting to see a friendly face!), and he saw an insane amount of doctors who's only goal was to make him well. From my count (and I'm sure I didn't count them all...) he met with 5 regular doctors (interns/residents/attendings in all), 3 renal doctors, 2 dermatologists, and his neurosurgeon came down with one of her colleagues (I kind of feel like I should be ending this with "and a partridge in a pear tree..."). They were all very accommodating, very friendly, and on top of their game so far as we could tell.
Kenny's former colleague happens to live two blocks from the hospital (it's seriously a 4 minute walk, which is about how long it takes me to get from my bedroom to my basement at home, it's that close), and offered his place up for us to stay. My mom came up and kept Cam at our house, and my SIL and FIL brought Benny boy up to NY so I could go back and forth to feed him (and so we could take turns watching him). Another coworker loaned us pack'n'play sheets for our stay, and countless friends and coworkers checked in with me, round-the-clock, to see how Kenny was doing. I cannot tell you how much this helped us...I'll never ever forget the kindness and generosity of those around us during this time.
So we got home yesterday, late afternoon...just in time for us to eat dinner, collapse, and wake up with a to-do list a mile long...because hey...we go back to Sloan tomorrow for Kenny's pre-op MRI, and Wednesday is the big day. As you can imagine, we're all a little crazed right now, between the 3 night hospital stay over the weekend and the bigger one starting in less than 48 hours. I probably won't write before then, so in the mean time, wish us luck! I'll be back in a few days to let you know how things go. Thank you so much to all who have been thinking of us, praying for us, and checking in with us this whole time-- it's been a huge comfort to us to know so many people have our backs. XOXO!
Remember how last week I mentioned that Kenny had been sick all week? His fever had subsided, he was regaining his appetite, but that rash just wouldn't quit. So last week we went to the GP two more times trying to find out what was happening. Through a couple of urine/blood tests, we figured out that his creatinine levels were elevated (that's protein in the blood)- which indicated that his kidneys weren't functioning at their best (at this point they were around a "2"- the highest it should be is 1.3 I think). Finally, Wednesday, he said he felt we should see a nephrologist to have his kidneys checked out -- at this point we'd seen doctors almost every day for a week and a half, and getting tired of adding doctors to the mix. Kenny called his neurosurgeon's assistant and expressed his concerns, and as we still hadn't gotten to the bottom of the rash (and everything that happened the week before), she had us come into Sloan Thursday morning for tests. We met a wonderful GP there who did the exam and scheduled ultrasounds for the kidneys and liver for Friday should we need them (just to make sure we were on the ball since he is scheduled for surgery Wednesday). About an hour after we trekked home from the city they called and said he needed to get back to Sloan to be admitted, because his creatinine levels were now up to 2.9 (so his kidneys were clearly not doing great at that point).
From there was a total roller coaster...with IV hydration, his creatinine levels did start to drop over the first night- not to a totally normal level, but they were definitely coming down. However, once his creatinine dropped, his potassium levels jumped. I'm sure a lot of you don't know a lot about this kind of stuff (I sure didn't before now), but if your potassium levels climb too high, it interferes with the electrical rhythms of the heart. 3.5-5 is normal, 6 is pretty bad, 7 is severe. At one point Kenny's potassium was at a 6.2. So the doctors and nurses did everything they could to help lower that level (I'd go into detail but it'd take a while and I'd probably lose you somewhere in the explanation of how it works). We had some hope on Friday night that the levels were totally normalizing, but early Saturday morning the potassium jumped back up. They did another round of their treatment plan and later Saturday the number had gone back down to 4.7 (phew!). However, at that point, Kenny's anxiety hit the roof, and they could no longer get an IV in or blood out (when you get anxious, your veins constrict). It took 4 hours and the aid of some anti anxiety meds, but they were finally able to get the draw they needed to test his levels and get the IV in. They must have been pretty nervous because a test that usually takes 90 minutes to get back was completed in 20 minutes...and thankfully, the numbers, even without IV fluid, were still down. They ran one more test on Sunday morning to be sure his kidneys were doing their things minus IV intervention (they let him sleep without the IV in overnight), one more EKG to make sure his heart rhythms were normal, and we were on our way. It was a crazy few days, lots of ups and downs and ins and outs, but as I like to say, we're generally pretty fortunate in our misfortune...
The care at Sloan was unlike anything I'd ever seen. His nurses were on top of his every move (and we even knew one of them- we hung out with her a bit down in Manasquan the summer we did the beach house- small world, and VERY comforting to see a friendly face!), and he saw an insane amount of doctors who's only goal was to make him well. From my count (and I'm sure I didn't count them all...) he met with 5 regular doctors (interns/residents/attendings in all), 3 renal doctors, 2 dermatologists, and his neurosurgeon came down with one of her colleagues (I kind of feel like I should be ending this with "and a partridge in a pear tree..."). They were all very accommodating, very friendly, and on top of their game so far as we could tell.
Kenny's former colleague happens to live two blocks from the hospital (it's seriously a 4 minute walk, which is about how long it takes me to get from my bedroom to my basement at home, it's that close), and offered his place up for us to stay. My mom came up and kept Cam at our house, and my SIL and FIL brought Benny boy up to NY so I could go back and forth to feed him (and so we could take turns watching him). Another coworker loaned us pack'n'play sheets for our stay, and countless friends and coworkers checked in with me, round-the-clock, to see how Kenny was doing. I cannot tell you how much this helped us...I'll never ever forget the kindness and generosity of those around us during this time.
So we got home yesterday, late afternoon...just in time for us to eat dinner, collapse, and wake up with a to-do list a mile long...because hey...we go back to Sloan tomorrow for Kenny's pre-op MRI, and Wednesday is the big day. As you can imagine, we're all a little crazed right now, between the 3 night hospital stay over the weekend and the bigger one starting in less than 48 hours. I probably won't write before then, so in the mean time, wish us luck! I'll be back in a few days to let you know how things go. Thank you so much to all who have been thinking of us, praying for us, and checking in with us this whole time-- it's been a huge comfort to us to know so many people have our backs. XOXO!
Monday, September 24, 2012
Surgery has been postponed
I'm tired. Like, up until 6 am drinking in Atlantic City and sleeping for 4 hours before driving home and taking care of two kids tired; minus all that pesky fun. Kenny has been sick for over a week now, starting with a rash, peaking with fevers about 102.5 and chills, tapering back off to a rash. Surgery has been postponed for another week, but if he can't get these thing under control, I guess it could be put off until he's clear of any infection.
Of course, this was just the icing on the cake of already feeling scared and nervous 24/7; on top of worrying about him being sick, I have to worry about the rest of us, especially Ben, getting sick. I think we're all a bit worn out, but now that the fever has (God willing/knock wood) subsided, I'm really hoping things look up and surgery can go on as (now) scheduled on October 3. I'm trying to stay positive, but it's been really difficult this last week. While surgery has actually kind of been the last thing on our minds with him feeling so sick, seeing him so down in the dumps and barely able to get off the couch had us all in agony. In previous weeks, while we were definitely scared and feeling the weight of everything going on, we kind of had a rhythm going. Kenny would work from home, anyone who was around would help out, and while we had some difficult conversations, we had plenty light hearted banter and every day talk keeping us chipper. This week was just all down...he went back to sleeping on the couch with someone staying by him, barely eating, and not doing...anything. Even writing that has me feeling like crap. Thankfully, the last day or two he's been able to get up and about a little bit with the fever gone, which has definitely helped morale.
I've spent a lot of time being angry (this obviously isn't news). I've missed my life so much it feels like it physically hurts. I miss everything about my house and living in it; our morning routines, our dinner time catch up, even just catching up on the DVR before we doze off at night. I miss my dog so incredibly much; her sweet doggy face, how she would lay on our feet at night, our evening walks together, and just having her around. All the simple little things about our lives together. I miss when my biggest worry was going to be how I was going to lose my baby weight or find time to write. I've been angry about losing all of that, about losing our independence. I know Kenny has felt the same, we've lamented about it, got mad about it, and cried about it. Sometimes, it seems we've lost sight of what really matters...
So the last few days I've been trying to change my attitude. I've been thanking God for every beautiful day. I've been trying to focus on the fact that our lack of independence is (hopefully) a temporary thing; and even if it isn't, we're fortunate enough to have all of the love, support and help we have. We've got two amazing babies, that (God willing and the Creek don't rise) are happy, healthy and loved so very much. We have soooo many wonderful people pulling for us and offering anything and everything to help. We've got good insurance, which affords us a wealth of opportunity to help Kenny get well; and, most importantly, as a friend of Kenny's said to him the other day, he's got this. This whole process has been terrifying...and pardon my French when I tell you that finding out about this tumor was a total mindfuck. There we were, just living out our lives, just had another baby barely home from the hospital; I mean, what sounds nicer than a happily married young(ish) couple expanding their family? BAM! Brain tumor. Except we know now it wasn't really that way, it'd really been there growing slowly for a very long time; but it kind of felt like an egg sized terrorist had just exploded an iud in my life. Mother effer. But one of the things I've always loved about Kenny is his confidence. Sure, it's caused a few good arguments (no one is ALWAYS right, dude!), but I've always admired his intelligence, his ambition, and how sure of himself he is...so yeah...he's got this.
I will continue to update when I get a chance! As always, many thanks to all for the continued thoughts and prayers- keep 'em comin'! XOXO
Saturday, September 15, 2012
It's official, Kenny is having brain surgery...while AWAKE!
I've started this post a few times, but feel like I have so much I want to say, and my mental flurry combined with my lack of sleep last night has me a bit unfocused- apologies in advance if my thoughts come out in a semi-coherent jumble.
I'll start with this: surgery has been scheduled. Kenny will be going under the knife on September 26 (as in less than two weeks) at Memorial Sloan Kettering. Now I'll back track so you know how we got there...
Last I wrote, we were on our way into the city to receive the results of a couple of tests the surgeon wanted done. She's a "planner", this surgeon, and while these tests are never entirely conclusive (nothing is more informative than actual surgery and pathology of the tumor); they better help her to give us information and ammo to make our decision, and help her map out her game plan. We breathed a sigh of relief to hear the PET still pointed to a low grade glioma, and the functional MRI helped her to better pinpoint what area of the brain his tumor is in. We thought once we had these results and got to speak to this surgeon on more time, we'd have our clear cut decision; instead, we left feeling confused about which direction to head.
While the scans did, technically, give us "good news" in terms of the tumor's grade and size, she said she felt she was only going to be able to remove about 50% of the tumor without affecting his ability to speak. This isn't the first time we've heard from one of these doctors that, because of the location, they may not be able to remove all of it. Every.single.doctor we have seen has mentioned that he will likely have transient loss of movement on the right side of his body (or perhaps just a sort of weakness); however, none of them were worried about this because, apparently, the other side of the brain would likely "re-wire" itself to start handling it (a built in contingency plan, if you will). I asked the doctor why it would not be the same for speech, and she explained that the speech function doesn't work the same as movement, and the other side couldn't "rewire" to regenerate his speech. Essentially, if his speech is lost, it could very well remain lost. Being a 31 year old father of two young kids with a lifetime ahead of him (God willing and the Creek don't rise), losing his ability to speak wasn't a great option. That's when she told us she'd like to do language mapping during the craniotomy.
Language mapping is when the patient is awake (yes, awake!!!); it's some one's job to converse with him the entire duration of the surgery, while the surgeon "probes" the areas of the tumor she suspects are on the area that controls his decision to speak. While probing, they can detect slight changes in his speech (probably nothing most of us would notice), and would be able to avoid those areas when removing the tumor (preserving his speech). While we knew both surgeons would want to do cortical mapping (using electrodes to test brain responses for motor function), this was the first someone had really pushed on the language mapping (although it wasn't the first time it had come up).
SO- after all this talk, weeks of interviews, and tests galore- it came down to this...go with the surgeon who wanted language mapping or the one who didn't. When we couldn't seem to come to a consensus, I suggested to Kenny that maybe he should involve his oncologist; sometimes you need an outsider's perspective to help you decide- obviously his family and I are a bit "close to the project" to remain objective. All it took was one phone call and a few sentences from the oncologist, and his mind was made up: he is going to Sloan, and he's going to be awake during his neurosurgery (GULP).
As for how I feel about Dr. Tabar? My OCD has me terrified to say as much, but I like her...a lot. I very much respect and admire the local surgeon we met, and I have no reservations about him whatsoever- had Kenny opted to choose him I wouldn't have blinked an eyelash about it- he's brilliant; but I felt a connection to Dr. Tabar- you know when you just kind of feel it in your gut? Of course, I'm terrified to be wrong, but confident decision making has never been my thing (I'm queen of the second guessers)- so I didn't push Kenny one iota- in the end he is the one who needs to be confident in his surgeon, because he's trusting them with his life.
While she and the local surgeon said a lot of the same things in terms of diagnosis and treatment, their approaches were quite different. I couldn't really pinpoint what seemed SO different between the two, but soon realized that his involvement would be a different level just because of where they work and how they operate (figuratively, not literally, although even literally it's a little different). His approach was a bit more sunshine and rainbows...surgery, minimal risk, hopefully get most of it, move on with life easy peasy; his involvement with Kenny really ends with surgery (minus two post op check ups). He wouldn't be involved in any additional treatment or follow up scans, unless it required additional operations. There's nothing wrong with that, and I'm pretty sure that is how most neurosurgeons work- they perform their surgeries and refer their patients out to other specialists as needed; he doesn't actually work at any specific hospital, but is a surgeon with rights to perform surgery at specific hospitals (I hope this is making sense).
The difference with Sloan (and Dr. Tabar), is that they work for Sloan- every nurse, surgeon and neurologist works there- they're part of one major team. The communication between all we've met appear to be seamless; the oncologist, surgeon and nurse team that we're in contact are all totally aware and "in the know." While I sometimes find it a little scary, Dr. Tabar's approach is a bit more pragmatic; she uses words no one wants to hear about their husband, like "life expectancy" and "remission." She is looking at the bigger picture not necessarily because she cares more than the other surgeon does, but because of where she works- one of the world's most renowned cancer hospitals. That's what so scary about those words...they sound, well, cancerous. While they believe the tumor to be benign (and we're certainly hoping they're right), they are likely not going to be able to remove all of it, and even if they could, it could grow back (at a "higher grade"- ie, more dangerous); and as Dr. Tabar explained to us, removing "all of it" is misleading, in and of itself. When a surgeon says they can remove all of a brain tumor, they mean the "body" of the tumor. She likened the tumor to a spider, as a body with a bunch of long, stringy legs...she can remove the body of the spider, but the long, stringy legs will remain, leaving room for them to grow their own little tumors or cause little issues themselves. So while this surgery is going to help, and is a step in the right direction, it's, by no means, the end of our journey.
So there it is...I hope I was able to explain it well enough. After all the talk and decisions being made this week, we were a little bit spent; but Thursday we had some friendly faces visit which was a really nice distraction. Even though a bit of a weight has been lifted since Kenny made his decision, with only a week and a half until surgery, we have some details to iron out and some things to do. He has a couple of pre op testing appointments and a final consult, we have to find a hotel for the 5 nights we'll be in the city, and we have to sort out childcare while we are in NY (we are bringing the kids since where we live is too far for me to go back and forth for Benjamin, and it's just easier to have them with me- but since most of us will be at the hospital with Kenny during the day, we'll need some babysitters- any takers??? hehehe). But for now, I think we're just going to try to enjoy the weekend before we finalize our plans next week. I'll do my best to check in as things progress.
As always, thank you all SO SO SO incredibly much for your continued positive thoughts and prayers coming our way, we can't say enough how much we appreciate them!! XOXO!
I'll start with this: surgery has been scheduled. Kenny will be going under the knife on September 26 (as in less than two weeks) at Memorial Sloan Kettering. Now I'll back track so you know how we got there...
Last I wrote, we were on our way into the city to receive the results of a couple of tests the surgeon wanted done. She's a "planner", this surgeon, and while these tests are never entirely conclusive (nothing is more informative than actual surgery and pathology of the tumor); they better help her to give us information and ammo to make our decision, and help her map out her game plan. We breathed a sigh of relief to hear the PET still pointed to a low grade glioma, and the functional MRI helped her to better pinpoint what area of the brain his tumor is in. We thought once we had these results and got to speak to this surgeon on more time, we'd have our clear cut decision; instead, we left feeling confused about which direction to head.
While the scans did, technically, give us "good news" in terms of the tumor's grade and size, she said she felt she was only going to be able to remove about 50% of the tumor without affecting his ability to speak. This isn't the first time we've heard from one of these doctors that, because of the location, they may not be able to remove all of it. Every.single.doctor we have seen has mentioned that he will likely have transient loss of movement on the right side of his body (or perhaps just a sort of weakness); however, none of them were worried about this because, apparently, the other side of the brain would likely "re-wire" itself to start handling it (a built in contingency plan, if you will). I asked the doctor why it would not be the same for speech, and she explained that the speech function doesn't work the same as movement, and the other side couldn't "rewire" to regenerate his speech. Essentially, if his speech is lost, it could very well remain lost. Being a 31 year old father of two young kids with a lifetime ahead of him (God willing and the Creek don't rise), losing his ability to speak wasn't a great option. That's when she told us she'd like to do language mapping during the craniotomy.
Language mapping is when the patient is awake (yes, awake!!!); it's some one's job to converse with him the entire duration of the surgery, while the surgeon "probes" the areas of the tumor she suspects are on the area that controls his decision to speak. While probing, they can detect slight changes in his speech (probably nothing most of us would notice), and would be able to avoid those areas when removing the tumor (preserving his speech). While we knew both surgeons would want to do cortical mapping (using electrodes to test brain responses for motor function), this was the first someone had really pushed on the language mapping (although it wasn't the first time it had come up).
SO- after all this talk, weeks of interviews, and tests galore- it came down to this...go with the surgeon who wanted language mapping or the one who didn't. When we couldn't seem to come to a consensus, I suggested to Kenny that maybe he should involve his oncologist; sometimes you need an outsider's perspective to help you decide- obviously his family and I are a bit "close to the project" to remain objective. All it took was one phone call and a few sentences from the oncologist, and his mind was made up: he is going to Sloan, and he's going to be awake during his neurosurgery (GULP).
As for how I feel about Dr. Tabar? My OCD has me terrified to say as much, but I like her...a lot. I very much respect and admire the local surgeon we met, and I have no reservations about him whatsoever- had Kenny opted to choose him I wouldn't have blinked an eyelash about it- he's brilliant; but I felt a connection to Dr. Tabar- you know when you just kind of feel it in your gut? Of course, I'm terrified to be wrong, but confident decision making has never been my thing (I'm queen of the second guessers)- so I didn't push Kenny one iota- in the end he is the one who needs to be confident in his surgeon, because he's trusting them with his life.
While she and the local surgeon said a lot of the same things in terms of diagnosis and treatment, their approaches were quite different. I couldn't really pinpoint what seemed SO different between the two, but soon realized that his involvement would be a different level just because of where they work and how they operate (figuratively, not literally, although even literally it's a little different). His approach was a bit more sunshine and rainbows...surgery, minimal risk, hopefully get most of it, move on with life easy peasy; his involvement with Kenny really ends with surgery (minus two post op check ups). He wouldn't be involved in any additional treatment or follow up scans, unless it required additional operations. There's nothing wrong with that, and I'm pretty sure that is how most neurosurgeons work- they perform their surgeries and refer their patients out to other specialists as needed; he doesn't actually work at any specific hospital, but is a surgeon with rights to perform surgery at specific hospitals (I hope this is making sense).
The difference with Sloan (and Dr. Tabar), is that they work for Sloan- every nurse, surgeon and neurologist works there- they're part of one major team. The communication between all we've met appear to be seamless; the oncologist, surgeon and nurse team that we're in contact are all totally aware and "in the know." While I sometimes find it a little scary, Dr. Tabar's approach is a bit more pragmatic; she uses words no one wants to hear about their husband, like "life expectancy" and "remission." She is looking at the bigger picture not necessarily because she cares more than the other surgeon does, but because of where she works- one of the world's most renowned cancer hospitals. That's what so scary about those words...they sound, well, cancerous. While they believe the tumor to be benign (and we're certainly hoping they're right), they are likely not going to be able to remove all of it, and even if they could, it could grow back (at a "higher grade"- ie, more dangerous); and as Dr. Tabar explained to us, removing "all of it" is misleading, in and of itself. When a surgeon says they can remove all of a brain tumor, they mean the "body" of the tumor. She likened the tumor to a spider, as a body with a bunch of long, stringy legs...she can remove the body of the spider, but the long, stringy legs will remain, leaving room for them to grow their own little tumors or cause little issues themselves. So while this surgery is going to help, and is a step in the right direction, it's, by no means, the end of our journey.
So there it is...I hope I was able to explain it well enough. After all the talk and decisions being made this week, we were a little bit spent; but Thursday we had some friendly faces visit which was a really nice distraction. Even though a bit of a weight has been lifted since Kenny made his decision, with only a week and a half until surgery, we have some details to iron out and some things to do. He has a couple of pre op testing appointments and a final consult, we have to find a hotel for the 5 nights we'll be in the city, and we have to sort out childcare while we are in NY (we are bringing the kids since where we live is too far for me to go back and forth for Benjamin, and it's just easier to have them with me- but since most of us will be at the hospital with Kenny during the day, we'll need some babysitters- any takers??? hehehe). But for now, I think we're just going to try to enjoy the weekend before we finalize our plans next week. I'll do my best to check in as things progress.
As always, thank you all SO SO SO incredibly much for your continued positive thoughts and prayers coming our way, we can't say enough how much we appreciate them!! XOXO!
Tuesday, September 11, 2012
Killing some time on the train...
So, today is 9/11. It's been 11 years since the terrorist attacks, and I think we all remember where we were that day. I was in the computer lab at school (remember those? When everyone and their mother didn't own a lap top, iPhone and iPad?), IMing with a friend who told me to turn on the TV...fast. What I saw terrified me, and I remember frantically calling Kenny to make sure he'd heard from his Dad (who works in the city). The days following were filled with fear, sadness and anger...not much unlike how I have felt this past month.
Today, on the 11th anniversary of that awful day, we are on our way into the city (I'm writing this on the train) to get the results of the PET scan and functional MRI that Kenny had done last week.We are pretty nervous...even though the doctor just wanted them done to better plan for the surgery, it's easy to let your fears take hold- what if the original scans were done poorly and we find out its worse than they thought? What if it's more aggressive than they thought and it's grown a lot? While most are praying for peace for the families of victims of the terrorist attack, I can't help but be praying mostly for my own. I *think* God will cut me some slack on that one, considering the circumstances.
On a same, but unrelated note, yesterday was Cam's first day of preschool. The girl could not have been more excited- in fact all of us agree that we don't think any of us have ever SEEN anyone more excited to go to school. I was happy for her (and for the short break), but anytime she is away from me, I miss her. While she was there, I had to run to the post office ( to finally mail the thank you cards I had written over a week ago). As I was getting to her school, Hey Soul Sister came on the radio (our song- I even used to sing it to her when she was in my belly)...and if that weren't enough, at the moment I was passing the school, I caught a glimpse of my little girl and her new school friends walking to the playground. Of course I started bawling, not only because it made me happy, but because it made me feel like someone "up there" was watching, and trying to brighten my day. Some might think that's silly or overreaching, but it's just how I felt that moment.
On that happy note, I'm going to try to relax on the rest of our train ride. Wish us luck today! Xoxo
Today, on the 11th anniversary of that awful day, we are on our way into the city (I'm writing this on the train) to get the results of the PET scan and functional MRI that Kenny had done last week.We are pretty nervous...even though the doctor just wanted them done to better plan for the surgery, it's easy to let your fears take hold- what if the original scans were done poorly and we find out its worse than they thought? What if it's more aggressive than they thought and it's grown a lot? While most are praying for peace for the families of victims of the terrorist attack, I can't help but be praying mostly for my own. I *think* God will cut me some slack on that one, considering the circumstances.
On a same, but unrelated note, yesterday was Cam's first day of preschool. The girl could not have been more excited- in fact all of us agree that we don't think any of us have ever SEEN anyone more excited to go to school. I was happy for her (and for the short break), but anytime she is away from me, I miss her. While she was there, I had to run to the post office ( to finally mail the thank you cards I had written over a week ago). As I was getting to her school, Hey Soul Sister came on the radio (our song- I even used to sing it to her when she was in my belly)...and if that weren't enough, at the moment I was passing the school, I caught a glimpse of my little girl and her new school friends walking to the playground. Of course I started bawling, not only because it made me happy, but because it made me feel like someone "up there" was watching, and trying to brighten my day. Some might think that's silly or overreaching, but it's just how I felt that moment.
On that happy note, I'm going to try to relax on the rest of our train ride. Wish us luck today! Xoxo
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