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