Over the last few weeks we've seen and spoken to an array of neurosurgeons and nuero oncologists. We've recounted the story of him seizing on the couch next to me a hundred times (or at least it feels that way), listened as they've explained where the tumor is (frontal left lobe), how big it is (size of an egg), and what course of action they would recommend (all but one has said resection). I've jotted notes at every appointment while Kenny and his mom asked a list of questions we all seem to have memorized by now (his mom is the master question asker- always thinking of great follow up questions), helping us to compare notes later on. We've endlessly debated pro's and con's of doctors, hospitals, and all things surgery related (pre-op procedures, what will be done during surgery and post-op care...), and we're finally down to two surgeons (and technically, 3 hospitals, since one of the surgeons can perform the surgery at his choice of two hospitals). It's been an arduous 3 weeks getting to this point...when we first started meeting with surgeons and oncologists, we were like deer in headlights- getting our questions from websites about brain tumors because we had no idea what we were talking about (who would???). Now, it's like a second language to us, all this brain tumor and neurosurgery speak...glioma, resection, language mapping, fmri, PET scan...the list goes on of words I probably never uttered in my life prior to August 2.
The two surgeons we have in the running are great...one is local who has the option of performing the surgery at either Monmouth Medical Center or NY Presbyterian/Columbia (both brain tumor centers...something I didn't know existed before now), and the other is at Memorial Sloan Kettering. They are both amazing surgeons from what we've heard around town (apparently, everyone knows everyone in the brain surgery world), making it a difficult choice...but in the grand scheme having good insurance and lots of great options is a good problem to have. Kenny has pretty much settled on a local neuro oncologist for post surgery life (since he will need to be on seizure meds a long time and monitored for tumor growth likely for the rest of his life) that we all really like and are super comfortable with. He has a couple of scans next week at Sloan and a follow up consult with the local surgeon, so we're hoping a surgery is on the books for mid-late September.
Things are settling down around here...the nug is getting used to the new living arrangements, we're getting used to our house temporarily being a storage unit, and while I don't think we'll ever get "used to" the words "brain tumor," it's getting a little easier to say.
We all seem to have our moments, but right now, I think we're all having more good moments than bad. Last week, I was having a particularly rough few hours. I felt angry, I felt like we were being a burden on Kenny's family, and I just wanted to go home. Kenny reminded me that I'm still just a few weeks out from having a baby, and I needed to cut myself a little slack. The extra hormones aren't exactly helping, but he was right. A couple of days ago I took both kids back to our house...Kenny had been saying he didn't think it was a good idea because he didn't want to confuse Cameron (she hadn't been to our house in just about 3 weeks), but I decided to be selfish and risk it. I needed a few hours with my kids, in my house, the way it would have been if Kenny had simply gone back to work after paternity leave. I have to say, it was exactly what I needed....I had 5 blissfully normal hours with my babies. I played with Cam, did laundry, and carried Ben around while I straightened up. I would say that I wouldn't have expected to be SO happy doing such mundane things, but that's just not true- I always loved doing such mundane things. I've mentioned many times how hard I worked to achieve some normalcy, and how much I loved my "boring" every day life. As stupid as it sounds, I think I thought that if I didn't take it for granted, I was somehow protected from losing it. Isn't that how the line goes? "You don't know what ya got til it's gone?" I knew what I had was amazing...maybe not to everyone (I know lots of women who shudder at the thought of being a housewife and stay at home mom), but it is for us. It's really silly in retrospect...to think I had any control over any of it.
In terms of how I'm feeling, mostly I just feel tired. It just seems that I never don't feel tired...Ben is a great sleeper, but he still needs to get up in the night to eat a few times, and of course Cam is finally breaking her 2 year molars (3 out of 4 at once)- so she's a bit cranky and not sleeping very well. During the day, on top of having the two kids, all the planning and talking is mentally taxing on all of us I think. I'd love to say that I stay positive all of the time (and I am a lot of the time), but I'd be lying. I have my moments where I get pretty mad or feel irrationally jealous of people enjoying their every day lives. I thought maybe that would be a temporary thing that happened in the beginning, but I'm thinking that's going to be something I battle with for a bit. Our old friends had a baby this morning, and I'm so, so happy for them- both of our kids are now born within months of each other and the same sex (our daughters were born about 3 months apart, now our sons are about a month apart). But at the same time, I'm jealous and pissed off that they're going to get to enjoy this time and we're not. We should be having family photos taken, photo bombing face book with every breath this kid takes, sending birth announcements and planning the sip and see we wanted to have for him. Instead we spent his one month birthday at Sloan Kettering, away from him the whole day and without much fanfare. I know it's stupid, it's not like he'll remember it and I'm sure lots of people think a one month birthday celebration of any kind is nonsense, but I'm mad that it wasn't even an option. I still struggle with feeling guilty over leaving the kids, especially Ben, and losing my patience with Cam (who, I'm sure, is going through her own thing with all these changes).
Not to mention frustrated. I debated on whether or not to even "go there" on here, but its been on my mind this whole time. We're lucky we keep getting "good" news, but I can't help but still be scared sometimes. I know it's cliche and I've said it a million times over the course of the last year and a half that this blog is in existence, but Kenny's not just a husband to me-- he's my best friend. He's the person I want to talk to when anything happens- good, bad or indifferent. There's a little talked about fact about Kenny and I, and that is that we split up for a short time after college (a month or two). During that time apart, I realized (the tough way), that I was never going to love anyone the way I love Kenny. Had we opted to remain apart and move on, I'm sure we both would have found lovely partners and had wonderful lives, but it just wouldn't have been the same...what we have doesn't happen twice in a lifetime..it just doesn't. It might sound smug, or annoying or like I'm painting a puppies and rainbows picture of relationships or marriage...let me make this very clear- I'm not under a delusion that we have a perfect relationship- no such thing exists. We've had up and downs and ins and outs, we call college the four year argument, and moving in together was an interesting relationship milestone to say the least...having kids was another big hurdle, as well...but we've made it through all of them together for one very simple reason...we want to be together. There were probably times in our near 14 years (prior to marriage) that we should have split up, because things weren't healthy, but it seems neither of us was ever really willing to throw in the towel. I'm grateful for that, of course, and I have no doubt that this is just another hurdle we'll have to jump together. The problem is that, for the first time in my life, I'm unable to say what I want to say. As great as I am with being able to say what I feel when I'm writing, I suddenly find myself unable to speak what I'm thinking. Any time I want to tell him how much I love and adore him, or what an amazing Dad he is, or how happy he's made me (all things I used to say on a usual basis no problem), it suddenly makes it sound like I think the worst is going to happen. Where I used to be able to just sputter out whatever I was thinking- no matter how bad or stupid it sounded- I suddenly find myself being overly cautious with what I say or how I say it, because I don't want to scare him or think that I don't have faith that he'll be okay. I'm sure we'll get over that at some point, but for someone like me, who's so used to being able to openly communicate, I find my sudden inability frustrating. For the record, I do think he'll be okay, I think a year from now this will all be a bad memory. I think things will be a new normal, since things will never be the normal they were before, but normal nonetheless.
Kenny feels pretty good...he said he thinks sometimes some people are afraid to say anything, or come by, because they think he's going to be a lump on a couch (he's not). His doctors say that other than the brain tumor and risk of seizure (oh, you know, those little things), he's in perfectly good health. I think at this point he's a bit more afraid of another seizure than he is of his inevitable brain surgery (although I'm sure once that is upon us in a few weeks, we'll all be pretty damn freaked out about that, too). He can't drive, so he has to rely on me or anyone around to even do something as simple as grabbing a gallon of milk. I have to hang out in the bathroom when he showers, and if I want to take the kids out we have to coordinate to make sure someone is around before I leave. It's all necessary right now, until he has a little more time under his belt without any seizures (his last focal seizure was just a little more than 2 weeks ago- knock wood for no more), but he still gets frustrated. It's been hard to coax him out of the house because of his fear of another seizure (and honestly, I can't blame him, I'm pretty terrified myself); however, slowly, but surely, we are taking some baby steps back into the fray. His company has been AMAZING in their support for him; not only accommodating him every step of the way thus far, but even making calls on his behalf and getting him in to see an amazing neurosurgeon (one of the final two, actually).
Overall, as I keep saying, we've been very fortunate in our misfortune. We have a lot of help. We have unbelievable friends and family. We've had people calling, texting, emailing, facebooking, and bringing food and much welcomed distraction. It's amazing how, when these situations arise, you find out how good people really are. I can't thank everyone enough who has reached out, offered help or advice, or their positive thoughts and prayers. I will update you as we progress as best I can...some days I am physically unable to sit and write a whole post (since the hubby is working from home on this computer, we have the crazy toddler, and the newborn who seems to think "I'm awake? Must be time to eat!"), and there's times where mentally, I'm just drained and can't form a coherent sentence. You should have seen me trying to write thank you cards yesterday...I think I wasted a whole pack with misspelled words and sloppy writing- yikes! Hopefully, I'll be updating you soon with more good news...thank you so much again to all those saying prayers and sending positive thoughts to Kenny! XOXO!
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