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!

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!

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

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!

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

Day 35 (5 weeks exactly since the grand mal)

I keep getting emails from these travel companies that are all titled "Need a break?" "Want a vacation?" "Want to get away from it all?"  Why yes, yes I do.  Of course, we all know that's not in the cards at the moment...not only because of what's going on, but because I also have a 6 week old (typically, travel isn't generally recommended for such youngin's).  Last year I wrote about how sad I was that summer was ending, and I remember how irrationally bummed I was about it straight through winter.  Obviously, we have bigger fish to fry this year, but I'm still pretty irrationally bummed that summer is over; and even more so that we didn't really get to enjoy the end of it.  I know in the grand scheme, that's a preeeeetty dumb thing to be upset about (especially now), but I can't help it.  The worst part is, the last two weeks I prayed for it to be over...I think I had it in my head that summer over = problems over, which, (SURPRISE), isn't the case.

It's been a tough week so far.  Last week was Kenny's birthday, and we managed to get a few celebrations in with family and friends (and even a nice dinner out alone).  I think we were all finally starting to let our guards down a little- it'd been almost four weeks since his last focal seizure, and I think we were starting to peek our heads out of our respective mental cubby holes a bit.  But on Tuesday, while eating dinner, Kenny gave me "the signal"- he tapped me on the arm and shook his head up and down- he felt a focal seizure coming on.  DAMN IT!!  I was mad, I was sad, I was exhausted.  I spend a lot of most nights trying to make sure neither child wakes him up (since his doctors have all stressed, time and again, that he needs rest), and in between, I check on him; every little noise coming from the other room has me hopping up to make sure he's still sleeping peacefully.  I generally end up on the couch, since Ben gets up at some point a few times every night- his family always tell me to wake them if I need help; but seeing as they do so much to help all day, I prefer to handle nights on my own (although sometimes Kenny's mom nabs Ben from his swing if she's up before me, and then I get an extra hour or two).

At first, I just wanted to make sure he was feeling okay, and when he returned to the dinner table, I went to the other room to cry (I really hate people seeing me cry, and I especially didn't want to alarm Cam who already kept asking "What happened to Kenny?"- yes, on occasion she calls him Kenny instead of Daddy- a wee bit of comic relief for us).  I really just felt spent at that moment- tired of being scared all the time and just plain tired, I sobbed for a couple of minutes.  If ever I'd had doubt before about this surgery (which I have had, out of sheer fear), it became apparent to me at that moment that it had to happen.  I'm still really effing terrified of the surgery, but realizing we'd been holding our breath all this time (figuratively), made me realize that unless this happens, we'll all be just waiting for the other shoe to drop...another focal seizure, another grand mal seizure, more symptoms that they warned us about if he opted to not have surgery (impaired speech and loss of movement on his right side)... I already feel like I've aged 5 years in 5 weeks, and I'm sure it's not going to get easier any time soon, but in terms of quality of life in the long term, I guess this is what has to happen.  It's getting harder to hold it together all the time, but for now, we're managing to (for the most part).

While I know I've said it before, I don't think it really sank in until recently that things aren't going to be the same.  I mean I knew it, but I didn't KNOW it.  I'll explain...when we first went to all these doctors, they all said they felt he could make a full recovery.  His oncologist even said he felt he could return to life as though it never happened.  I had a clear vision in my head of life literally going back to normal...me at home with the kids, walking the dog, Kenny hopping the bus to the city and me having dinner ready when he got home-- our boring, normal life.  It didn't dawn on me until a few weeks later (after talking to many doctors), that their definition of "normal" and "as though it never happened"are vastly different than mine.  I think because they see people with such dire prognoses all the time, when they say things like that, they mean he could and likely will have a normal life expectancy.  However, it's really not going to be what it was.  Maybe 5 or 10 years down the line it could be, but not any time soon.  Legally, he won't be able to drive for a year from his last seizure.  Mentally, I don't think he'll be comfortable driving a lot longer, especially with our kids in tow.  While we all assumed he'd be on the seizure meds for a little while after surgery (and no one told us otherwise at first), we found out (after I asked specifically- the key to getting real answers I've learned), that he'll be on them at least 2-3 years to start, and that was a minimum.  He'll have to have lots of follow ups and MRI's and monitoring...and with the continued seizure risk (they said the scar left on the brain from removing the tumor can cause seizures), we realize our house, with 3 floors and lots of stairs, is likely no longer the best place for us.  So, while I knew on some level things would be different, it's looking more like things will be really different.  It's okay, because I know we'll adapt, and honestly I could give a shit less if we lived in a shack as long as the surgery goes well and he is here with me and our family; but it's still sad.  It's ironic, because for so long we talked about moving...we felt unattached to the house itself and I've talked numerous times about the circumstances of us purchasing it (we were supposed to flip it within 2 years, but we're onto 5 years now), and faced with leaving it now, I'm pretty broken up about it.  We decided 18 months ago we were going to make a "go" of making it a home- we've painted every wall, replaced every floor, gutted the kitchen and master bathroom, and turned two unoccupied spare bedrooms into our children's sanctuaries.  We put so much thought and energy into how we wanted each room to feel, and although we were far from finished, it began to be our home.  The only thing I'm glad about (in terms of leaving the house) is that because of that experience, I know we can make any house, apartment, condo (or shack) our home.

Today, he's up at Sloan Kettering having a PET scan and an fMRI.  We'd decided about a week ago that he would go up there with his Mom and I would stay here with the kids, since I'd been feeling so bad about leaving them; but this morning I knew we'd made a mistake in that decision; I knew when he was getting ready to go that I should be going with him.  I don't doubt his Mom's ability to ask questions or be supportive (she's his Mom, after all, if it weren't me there, I'm glad it's her), but I just know I should be there.  My anxiety is through the roof (and I know his is, too).  When we first decided this, I don't think either of us anticipated being so nervous about the tests- he was actually the person who told me maybe I should stay here, because he wouldn't be seeing the surgeon today, just having the tests.  But late last night that uneasy feeling set in (especially since he had the focal seizure earlier this week), and this morning I think it went viral for both of us.  I know he's in good hands with his Mom and the doctors up there, I just wish I was in the waiting room for him when he came out of the tests.  This is one of those really shitty moments where I feel like I'm failing because I can't split myself in two.  I can't be with him without leaving the kids, and I can't stay with the kids without him going without me.  It just sucks.  No better way to say it.

On the bright side of things, we have some normal life stuff going on this week, too.  Tonight, post- anxiety-inducing tests, we have back to school night at Cam's preschool, and tomorrow morning (prior to a final consult/interview with the local surgeon), we have a meet and greet for Cam to get to know her new classmates.  We've filled some of our time planning for her school year- I ran home and grabbed some of her school clothes and shoes, went shopping for some new ones, and Kenny and I went out the other day to get a new lunchbox to surprise her with from Pottery Barn (it's the little things that excite 2.5 year olds); and on Monday, my little nuggette starts her first full year of preschool.  I'm excited for her to have something normal and stable going on (and, I admit, a few hours a week where she's otherwise detained).  I think the schedule (and small break) will be really good for all of us, and she's really missed her teachers and friends all summer.

On that note, I'm going to try to spend the rest of the day enjoying my babies.  Interesting fun fact: it's the first time I'm actually alone with them both all day!  Thanks again to everyone for the continued thoughts, prayers and positive thoughts- keep them coming! We SO appreciate it!!!!!
XOXO

The new normal

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!