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!
It's a living thing...
Saturday, September 15, 2012
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
Thursday, September 6, 2012
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
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
Tuesday, August 28, 2012
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!
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!
Saturday, August 11, 2012
Day 10
I can't believe today is already the 10th day since this all started. The days seem to feel long but somehow time is going really fast. I think there are just parts of the days that fly and hours of those days that time drags and the thoughts and worries plague us.
It's been a really tough few days...we are so grateful for the continued "good" news from all the neurosurgeons we've been seeing, but the adjustment is starting to wear on us. Cameron is acting out, at times begging to go home, refusing to sleep (even more so than usual), and genuinely confused. I know kids are resilient, I know she'll be okay, it's just really difficult at the moment. I'm about 2.5 weeks postpartum, and although I've got loads of help with the kiddies, I'm still up at night with the little guy and sometimes those middle of the night moments of anxiety set in making it tough to get back to sleep. I'm also still healing and doing my best to continue BFing the little man which takes some energy and some focus on myself (which isn't the easiest right now). It's important to me to keep trying and Kenny has told me time and again through this process that it's really important to him, too. So far, it's going well, but having to make sure I pump and produce enough to leave with the sitters when we run out for all these appointments is taxing.
Going home is really sad...every time we go in our house my heart hurts. I keep hoping every time I go that it will hurt a little less, but seeing the house as it was the day we left stings. Cam's toys still strewn about, just played with that morning, mail on the counter, laundry in the basement. The irony of all of this is that we spent so much time this year really making the house a home, making it our home, and now we're not living in it. Every little thing is a reminder of "how things were." Even going to the grocery store yesterday stung...with the exception of when I was super pregnant, I actually enjoyed going there every week. Cam and I would chat while I strolled the aisles, I'd grab her something to munch on and sometimes I'd even be the weird Mom singing along with my toddler as she belted out the wheels on the bus or the ABC's. Yesterday, much like when I go to my house, it felt different and like we didn't belong there.
The neurosurgeon we saw yesterday implied that the tumor had been there a long time...he may have even been born with it. Later in the day, I took Kenny to get his hair cut...since he can't drive and we're still a bit sketchy on leaving him out of sight, I sat and waited for him while he had his appointment. It was a little uncomfortable...the barber shop has an urban vibe...the dress code is fancy sneakers, basketball shorts, a barber's cape and some form of metal chain necklace. They were blasting old school Jay-Z and Biggie Smalls (I mean "can't hear yourself think" kind of blasting), and they were clearly wondering why this guy's wife was supervising his hair cut. When Mo Money Mo Problems came on, I was instantly transported back to Mexico in the summer of 1997. On vacation with my family, my brother and I and our new vacation friends drunkenly dancing in the "disco" at the resort (sorry, Mom!), thinking it was the best song ever. I remember hanging outside the bar that night and my brother trying to speak spanish while he was slurring...I remember he wanted to say "pero" but kept rolling his r's like "perro" (for those who didn't take spanish, pero = but, perro = dog) and I kept correcting him. Funny how you remember those weird little details just by hearing a song...and suddenly those questions creeped right back in...everything comes back to that...did he have the brain tumor then? Was it already affecting our future a year before we even met?
The question is redundant, but it's hard to recount 14.5 years with someone and not wonder if this thing was a part of our lives the whole time. From what I can tell, this is all "normal" for when this kind of thing happens. It's "normal" to be angry. It's "normal" to question everything. It's "normal" to feel overwhelmed. I think my whole definition of "normal" has changed drastically in the last two weeks. Things feel chaotic; we're kind of winging it and in total survival mode- but I'm hopeful that soon enough a new "normal" will emerge...maybe in 3-6 months things will even out...maybe we'll be moved back home and maybe daily life will resemble what it did 3 months ago...but it will never be the "normal" we used to know.
The hardest part about all of this is that we still have to be parents. We are endlessly researching neurosurgeons and neuro oncologists; running out to appointments, sourcing out pertinent questions, debating pro's and con's of biopsies versus immediate surgery... but have to make sure our kids are fed, well and happy. We still have to clean the poopsplosions out of the newborn swing. We still have to kiss boo-boo's and sing songs and have one on one time with our children. I lost my positive mojo this morning when a waitress made a seemingly harmless statement to me. We mentioned we had a newborn at home, and she said she couldn't possibly have left her 2 week old at home already (we took just Cam, since it's been a really hard few weeks for her and felt she needed the face time). I made it out the door okay, but started bawling when I got in the car. In a perfect world, I wouldn't be leaving my 2 week old at home for any reason...maybe an hour here or there to go food shopping or run a quick errand with Cam. But it's not a perfect world and our situation isn't currently ideal. Starting at 9 days old I've had to leave my little guy more than any new mom would like...but it's necessary, and important. I understand that right now, there are moments that my husband needs me more than my baby does. I've been struggling to do what I can for my little family, but I can't be in 3 places at once. I've had to run out of many important discussions and conversations to feed Ben, because I'm not at my own house and I can't just whip out the ladies at the kitchen table to do so. I've had to leave all 3 of them at some points to run home and walk my poor dog who's been mostly living alone for the last week aside from a few days at the farm (and rush back from said errands when someone texts me that Ben is up and hungry). I have had to leave while my 2.5 year old screams for me, I've had to juggle getting both of them to bed because they both need me to get to sleep at the moment (well, she needs me to get to bed, he just always seems to get hungry at her bed time). I've had the guilt of my daughter begging to stay with me at night, only to be carried away after she falls asleep because we just can't risk Kenny getting a poor night's rest right now (his neuro oncologist said he can take all the seizure meds in the world but if he doesn't sleep, he risks having another grand mal seizure). I'm juggling constantly with who needs me most that minute. And it sucks. And it's hard. And today when that waitress made that comment to me, I felt like a failure.
I know it's going to be hard for a while, even with all the amazing help we have, even with the "good" news, even with all the support we've been getting from all of the terrific people we know. It's strange...only recently I was writing about how I had gone to surviving every day to living and enjoying every day as it came...and now it seems we're kind of doing both. There's moments where we're rushing to get to the doctor and making small talk to try to keep our nerves at bay...and moments where we're just grateful for our family and our beautiful kids. Just watching Ben sleep or listening to Cam sing, or enjoying 10 minutes where we get to snuggle on the couch.
Now that it's the weekend, we're trying to just enjoy a little down time. Once Monday hits, the doctor's visits, calls with the insurance company and debates can all begin again. In the mean time, we're hoping things are well enough for a little family pool club time tomorrow- fingers crossed for a little slice of old "normal."
Tuesday, August 7, 2012
Day 5: Thanking God for small blessings
Monday, August 6
I don't really know where to begin...I suppose with the "facts." Before Kenny was discharged on Friday afternoon, the on-call neurologist told us that the MRI didn't offer any further information than the CT scan performed earlier; the tumor didn't absorb the dye used for contrast- which, according to them, is a good sign. They also said they *thought* it was a low grade tumor (which means non-aggressive and slow growing). Later on Friday, we saw a neurosurgeon who was very nice, but a bit vague. He didn't offer up much more information, but also suspected it was a low grade tumor; and when he called on Saturday with the radiologist's analysis, he additionally felt it was a low grade tumor. Not that this was fabulous news, but if you're going to have a brain tumor, low grade is what you want to have.
Since it was late on Friday by the time we were done there, we knew nothing else could be done until Monday. Having the weekend to simmer on the information was a blessing and a curse. On one hand, we got to absorb some of the shock and start planning our attack. On the other, we had a bit of extra time on our hands to let our minds get away with us. We were fortunate enough to have some wonderful people come to visit and bring some yummy food! I think sometimes when these things arise, a lot of people are scared to contact you or scared to come by, when really the distraction is more than welcome.
On Friday afternoon, someone made some calls for us to get in to see another neurologist out of a great hospital nearby; we saw him first thing today, and he was absolutely terrific. Not only was he more than thorough (he explained every little detail from the angle of the MRI pictures to very lengthy details on our options and the pro's and con's of each), he gave us hope. He said he felt he could adequately remove the tumor, and that he felt Kenny could make a full recovery- music to our ears! While we know this doesn't mean anything for sure, we spent the day feeling a little bit lighter.
Now for the rest...
I'm flippin' beat. I'd wanted to update Friday night but having been up for 40 hours and had the amount of information thrown at us, we crashed pretty hard. Getting to sleep was a bit tough that first night, in spite of the exhaustion; every time I closed my eyes I couldn't see anything but Kenny seizing. The last few days have felt really long...it seems like ages ago it was Thursday morning and we were having those light conversations over morning coffee. I'm just 2 weeks postpartum, so I'm still "recovering" from having a baby and trying to get used to having a newborn in the midst of all this. We've all but moved into Kenny's parent's house, which we're grateful for. Having had a seizure, he has a lot of restrictions that would make it really hard to be home without help (can't drive, be alone with the kids, or alone at all actually, can't hold the baby unless he's sitting on the couch, etc). I miss my bed, I miss my house, I miss having my own space...I think I just keep thinking I'll feel better if we can go home, but I think I'm failing to realize that even if we go home (whenever we go home), life isn't going to be "normal" for a while.
I spent a lot of time this weekend fluctuating between resolve and feeling angry and "mourning" the life we had just a few days ago. Seeing people's happy, normal, every day statuses on Facebook made me irate. I know it's not rational to be mad about people living their normal lives...going on their summer vacations or hanging out with their friends or going to the beach, but it did. I was just posting those things...going to the pool club or eating breakfast with our toes in the sand...but there I was instead, looking at the white blurb on my husband's MRI that was threatening to take him away from us. The doctor on Friday said that he'd suspected it had been there a long time- although he couldn't say for sure. But what does that mean??? Has it been a year? Five years? Longer? Was it there when he proposed to me? When we got married? When Cameron was born??? Maybe it shouldn't really matter, but I just want to know how long this thing was creeping up in there, threatening our lives before we knew it.
By the end of the weekend, we'd realized all the many, MANY small blessings that had been bestowed upon us in spite of discovering something awful. Kenny and I had a lot of plans for Thursday...we were going to go out for a nice lunch not all that close to home, run some errands, maybe do some work on the house; yet somehow, instead, he insisted we nap on the couch. A place, I might add, that he never sits. We have a chair on the other side of the room that he usually decides to sit in when hanging in our living room; but that day, he sat squarely on the big fluffy couch. Let's add in that he was on paternity leave and not at work in Manhattan where he would have been otherwise, and that Cameron happened to not be home. Had we been running errands he would have been the driver (he always is); had we been doing work on the house I may not have been next to him to call 911, or he may have been near the stairs, or in any place where he could have injured himself during the seizure. Had he been at work, he very well could have been walking down a crowded city street. If Cam had been home...I just can't even imagine had she seen that. Or worse...he may have been alone with her (as he often takes her down to the basement to play when I'm doing something else in the house). Lastly, Friday was my actual due date with Ben. Could you imagine if I'd been in labor? Or gone into labor after all this happened? But none of those things happened...thanks to someone...God, those we love who've gone before us, someone...
Today we also realized another blessing...
Kenny's "panic attacks"(aka, the focal seizures), began about 6 weeks before I got pregnant with Benjamin. Through all of this, I've gone back and forth about being mad that it wasn't diagnosed properly immediately, that I didn't force him to see a doctor sooner, and maybe grateful we didn't know so quickly...because obviously had we known, we wouldn't have tried for him. Today, for the second time, a doctor hinted that the focal seizures may have escalated into a grand mal seizure because he was so tired...because we had a new baby. That's when we realized that if it weren't for Benjamin being here, these focal seizures could have gone on for months, years even, without us knowing it was much more than some anxiety giving him grief. The weird part (although I'm not sure weird is the right word), is that (TMI WARNING!), Benjamin is a first try baby. Since it took quite a few months and a couple of early losses to get Cameron, I'd assumed that was how it would happen again. When it happened so quickly, it made me scared. Knowing my history, that's not surprising. I thought because it happened so fast I was bound to lose the pregnancy...except I didn't. 9 months later our little man arrived, and less than two weeks later, his presence may just be the thing that saves my husband's life.
And now? Now we get a few more opinions. We say a few more prayers. We cross our fingers and knock on wood, and ask those around us for positive thoughts. We lean on each other, on our families, and we hope that things turn out okay.
I don't really know where to begin...I suppose with the "facts." Before Kenny was discharged on Friday afternoon, the on-call neurologist told us that the MRI didn't offer any further information than the CT scan performed earlier; the tumor didn't absorb the dye used for contrast- which, according to them, is a good sign. They also said they *thought* it was a low grade tumor (which means non-aggressive and slow growing). Later on Friday, we saw a neurosurgeon who was very nice, but a bit vague. He didn't offer up much more information, but also suspected it was a low grade tumor; and when he called on Saturday with the radiologist's analysis, he additionally felt it was a low grade tumor. Not that this was fabulous news, but if you're going to have a brain tumor, low grade is what you want to have.
Since it was late on Friday by the time we were done there, we knew nothing else could be done until Monday. Having the weekend to simmer on the information was a blessing and a curse. On one hand, we got to absorb some of the shock and start planning our attack. On the other, we had a bit of extra time on our hands to let our minds get away with us. We were fortunate enough to have some wonderful people come to visit and bring some yummy food! I think sometimes when these things arise, a lot of people are scared to contact you or scared to come by, when really the distraction is more than welcome.
On Friday afternoon, someone made some calls for us to get in to see another neurologist out of a great hospital nearby; we saw him first thing today, and he was absolutely terrific. Not only was he more than thorough (he explained every little detail from the angle of the MRI pictures to very lengthy details on our options and the pro's and con's of each), he gave us hope. He said he felt he could adequately remove the tumor, and that he felt Kenny could make a full recovery- music to our ears! While we know this doesn't mean anything for sure, we spent the day feeling a little bit lighter.
Now for the rest...
I'm flippin' beat. I'd wanted to update Friday night but having been up for 40 hours and had the amount of information thrown at us, we crashed pretty hard. Getting to sleep was a bit tough that first night, in spite of the exhaustion; every time I closed my eyes I couldn't see anything but Kenny seizing. The last few days have felt really long...it seems like ages ago it was Thursday morning and we were having those light conversations over morning coffee. I'm just 2 weeks postpartum, so I'm still "recovering" from having a baby and trying to get used to having a newborn in the midst of all this. We've all but moved into Kenny's parent's house, which we're grateful for. Having had a seizure, he has a lot of restrictions that would make it really hard to be home without help (can't drive, be alone with the kids, or alone at all actually, can't hold the baby unless he's sitting on the couch, etc). I miss my bed, I miss my house, I miss having my own space...I think I just keep thinking I'll feel better if we can go home, but I think I'm failing to realize that even if we go home (whenever we go home), life isn't going to be "normal" for a while.
I spent a lot of time this weekend fluctuating between resolve and feeling angry and "mourning" the life we had just a few days ago. Seeing people's happy, normal, every day statuses on Facebook made me irate. I know it's not rational to be mad about people living their normal lives...going on their summer vacations or hanging out with their friends or going to the beach, but it did. I was just posting those things...going to the pool club or eating breakfast with our toes in the sand...but there I was instead, looking at the white blurb on my husband's MRI that was threatening to take him away from us. The doctor on Friday said that he'd suspected it had been there a long time- although he couldn't say for sure. But what does that mean??? Has it been a year? Five years? Longer? Was it there when he proposed to me? When we got married? When Cameron was born??? Maybe it shouldn't really matter, but I just want to know how long this thing was creeping up in there, threatening our lives before we knew it.
By the end of the weekend, we'd realized all the many, MANY small blessings that had been bestowed upon us in spite of discovering something awful. Kenny and I had a lot of plans for Thursday...we were going to go out for a nice lunch not all that close to home, run some errands, maybe do some work on the house; yet somehow, instead, he insisted we nap on the couch. A place, I might add, that he never sits. We have a chair on the other side of the room that he usually decides to sit in when hanging in our living room; but that day, he sat squarely on the big fluffy couch. Let's add in that he was on paternity leave and not at work in Manhattan where he would have been otherwise, and that Cameron happened to not be home. Had we been running errands he would have been the driver (he always is); had we been doing work on the house I may not have been next to him to call 911, or he may have been near the stairs, or in any place where he could have injured himself during the seizure. Had he been at work, he very well could have been walking down a crowded city street. If Cam had been home...I just can't even imagine had she seen that. Or worse...he may have been alone with her (as he often takes her down to the basement to play when I'm doing something else in the house). Lastly, Friday was my actual due date with Ben. Could you imagine if I'd been in labor? Or gone into labor after all this happened? But none of those things happened...thanks to someone...God, those we love who've gone before us, someone...
Today we also realized another blessing...
Kenny's "panic attacks"(aka, the focal seizures), began about 6 weeks before I got pregnant with Benjamin. Through all of this, I've gone back and forth about being mad that it wasn't diagnosed properly immediately, that I didn't force him to see a doctor sooner, and maybe grateful we didn't know so quickly...because obviously had we known, we wouldn't have tried for him. Today, for the second time, a doctor hinted that the focal seizures may have escalated into a grand mal seizure because he was so tired...because we had a new baby. That's when we realized that if it weren't for Benjamin being here, these focal seizures could have gone on for months, years even, without us knowing it was much more than some anxiety giving him grief. The weird part (although I'm not sure weird is the right word), is that (TMI WARNING!), Benjamin is a first try baby. Since it took quite a few months and a couple of early losses to get Cameron, I'd assumed that was how it would happen again. When it happened so quickly, it made me scared. Knowing my history, that's not surprising. I thought because it happened so fast I was bound to lose the pregnancy...except I didn't. 9 months later our little man arrived, and less than two weeks later, his presence may just be the thing that saves my husband's life.
And now? Now we get a few more opinions. We say a few more prayers. We cross our fingers and knock on wood, and ask those around us for positive thoughts. We lean on each other, on our families, and we hope that things turn out okay.
Saturday, August 4, 2012
Day 1
Written on Friday, August 3 at 4 am.
Today was a God awful day. I don't mean that the newborn didn't sleep or that the toddler threw a tantrum. I mean today was one of those days you have nightmares about. It was an OCD fear coming true.
In case I never explained it before, my OCD isn't of the maniacal hand washing variety. My OCD revolves squarely around one thing, something bad happening to those I love most. I've envisioned myself tripping down the stairs while holding the baby. I've envisioned my daughter getting into a car accident every time she leaves the house without me. I worry every time my husband leaves for Manhattan that a terrorist is going to blow up the Lincoln tunnel. These thoughts are obsessive and debilitating, and at first I had rituals that I felt warded off these terrible things. I sought therapy, and they helped me cope to the point of being able to keep the rituals in check. Except today, one of those bad things happened.
After the nug happily trotted off to the Crayola factory with her Grandma and Aunt, the hubs and I decided to take little dude out for a quick lunch. We enjoyed a new "healthy" fast food type place that just opened, and headed home. We had planned to get some stuff done around the house since Cam wasn't home, but the hubs suggested we nap instead (even though Ben is a rock star sleeper, he is still up every 2 hours eating). We both dozed off quickly, but I was jolted awake to a different world...
Next to me on the couch, my husband, my best friend since I was 17, the love of my life, was seizing. I've never seen a seizure before except on TV. In a panic, I ran to call 911. A minute seemed like an hour as I begged the responder on the other end to hurry up. His body jerking uncontrollably, his lips turning blue, I stood so unbelievably frustrated that I couldn't do anything to help him. As the seizure wore off, my husband looking directly at me, terrified, unable to speak, I knew our lives as we knew them were gone.
Those two minutes seemed like an eternity. For the first minute I was terrified he was going to die, and when I saw him breathing I wondered who was coming back to me. Did he know who I was? Did he know who HE was? It was literally the scariest moment of my life; I'm sweating and shaking just recounting it; and if you thought that was the worst part of the day, you'd be mistaken...
It barely registered with me at that moment that we had a 9 day old in the swing just feet away from where this was happening. What did register was that my 2.5 year old was on her way to our house at that moment, and I didn't want her seeing Daddy that way. Since he was now alert and able to speak, and confirmed he knew he and I were, I called his mom to let her know what happened. The medics said he was, overall, okay; but needed to go to the hospital. I scrambled from there- this was unknown territory for me and at this point, realized the 7lb elephant in the room- I couldn't bring the baby on the ambulance, but felt strongly about being with my husband. Thankfully, Kenny's mom had the wherewithal (since I certainly did not by then) to call a friend to come to my house to watch Ben until they arrived. I quickly nursed him while I waited, and did my best to avoid the nosy neighbors standing around trying to find out what happened.
Once at the hospital, we all started pondering at what happened. The hubs had been complaining for almost a year about panic attacks; he'd even gone to 3 different doctors (including a therapist) to see if he could figure out what was happening. Although in retrospect you'd think one of the 3 doctors might have guessed at something neurological, none of them did.
Finally, after 3 hours and a few tests, the on call doctor told us he had results. We expected to hear something along the lines of epilepsy or some other seizure disorder, but instead, he informed us that my 31 year old, otherwise healthy husband has a tumor on his brain. There were four of us listening, Kenny's mother and father, and Kenny and I; and I don't think any of us took in a single breath for a good 15 seconds as we absorbed the shock of what he was saying.
I'd been holding in tears all day. The sight of my best friend in the world convulsing was enough to give me nightmares for the rest of my life; but this? This was too much. This couldn't be happening. We just had a baby last week. He just had a physical in February. He's too good a guy for this. The minute his mom reached to hug me, the tears ran, and haven't really stopped running.
When I ran home at 9pm (6 hours after I left), it felt weird to be there. Everything looked the same, but everything felt different. The blissfully mundane life I had when I woke up this morning had vanished. It felt like I didn't belong in my house anymore. All the happy, normal, boring things we talked about all morning...oh God how I wish I could go back there now. Chatting about a sip and see party we wanted for Benjamin and who won the gold last night...you have no idea what I'd give to be talking about that shit right now. Now we are talking about tumor shrinking and neurosurgery. Instead of pinning blue cake pops on Pinterest I'm trying to wrap my head around helping my husband fight a brain tumor. And my kids...what do you tell a 2.5 year old about this?? Just hearing her ask for Daddy made my stomach want to flip inside out.
So here I am, at 4 am by his bedside at a local hospital I'm not at all comfortable with him being at, thinking a lot of shit and steering my mind as best I can from even scarier shit. I'm just trying to breath. Trying to take every minute as it comes. Trying to keep my tears at bay and focus on the tasks at hand.
You might be wondering why I'm even writing this right now. Because writing is just what I know to do. When I feel helpless, when I have no control, when I feel the walls around me are crumbling, I write. I've tried crying about it, reasoning with God about it, I even tried cursing at it- as if saying "Fuck this shit" enough would make it go away.
For now I'm going to watch him sleep...something he was scared to do since he was sleeping when this all started. I'm going to get up tomorrow (I'm not actually going to sleep, it's just not going to happen), and figure out what the Hell we're going to do next. I'm going to hug my husband, and make sure he knows that whatever they say, it's going to be okay. Because it is. Because it has to be.
Today was a God awful day. I don't mean that the newborn didn't sleep or that the toddler threw a tantrum. I mean today was one of those days you have nightmares about. It was an OCD fear coming true.
In case I never explained it before, my OCD isn't of the maniacal hand washing variety. My OCD revolves squarely around one thing, something bad happening to those I love most. I've envisioned myself tripping down the stairs while holding the baby. I've envisioned my daughter getting into a car accident every time she leaves the house without me. I worry every time my husband leaves for Manhattan that a terrorist is going to blow up the Lincoln tunnel. These thoughts are obsessive and debilitating, and at first I had rituals that I felt warded off these terrible things. I sought therapy, and they helped me cope to the point of being able to keep the rituals in check. Except today, one of those bad things happened.
After the nug happily trotted off to the Crayola factory with her Grandma and Aunt, the hubs and I decided to take little dude out for a quick lunch. We enjoyed a new "healthy" fast food type place that just opened, and headed home. We had planned to get some stuff done around the house since Cam wasn't home, but the hubs suggested we nap instead (even though Ben is a rock star sleeper, he is still up every 2 hours eating). We both dozed off quickly, but I was jolted awake to a different world...
Next to me on the couch, my husband, my best friend since I was 17, the love of my life, was seizing. I've never seen a seizure before except on TV. In a panic, I ran to call 911. A minute seemed like an hour as I begged the responder on the other end to hurry up. His body jerking uncontrollably, his lips turning blue, I stood so unbelievably frustrated that I couldn't do anything to help him. As the seizure wore off, my husband looking directly at me, terrified, unable to speak, I knew our lives as we knew them were gone.
Those two minutes seemed like an eternity. For the first minute I was terrified he was going to die, and when I saw him breathing I wondered who was coming back to me. Did he know who I was? Did he know who HE was? It was literally the scariest moment of my life; I'm sweating and shaking just recounting it; and if you thought that was the worst part of the day, you'd be mistaken...
It barely registered with me at that moment that we had a 9 day old in the swing just feet away from where this was happening. What did register was that my 2.5 year old was on her way to our house at that moment, and I didn't want her seeing Daddy that way. Since he was now alert and able to speak, and confirmed he knew he and I were, I called his mom to let her know what happened. The medics said he was, overall, okay; but needed to go to the hospital. I scrambled from there- this was unknown territory for me and at this point, realized the 7lb elephant in the room- I couldn't bring the baby on the ambulance, but felt strongly about being with my husband. Thankfully, Kenny's mom had the wherewithal (since I certainly did not by then) to call a friend to come to my house to watch Ben until they arrived. I quickly nursed him while I waited, and did my best to avoid the nosy neighbors standing around trying to find out what happened.
Once at the hospital, we all started pondering at what happened. The hubs had been complaining for almost a year about panic attacks; he'd even gone to 3 different doctors (including a therapist) to see if he could figure out what was happening. Although in retrospect you'd think one of the 3 doctors might have guessed at something neurological, none of them did.
Finally, after 3 hours and a few tests, the on call doctor told us he had results. We expected to hear something along the lines of epilepsy or some other seizure disorder, but instead, he informed us that my 31 year old, otherwise healthy husband has a tumor on his brain. There were four of us listening, Kenny's mother and father, and Kenny and I; and I don't think any of us took in a single breath for a good 15 seconds as we absorbed the shock of what he was saying.
I'd been holding in tears all day. The sight of my best friend in the world convulsing was enough to give me nightmares for the rest of my life; but this? This was too much. This couldn't be happening. We just had a baby last week. He just had a physical in February. He's too good a guy for this. The minute his mom reached to hug me, the tears ran, and haven't really stopped running.
When I ran home at 9pm (6 hours after I left), it felt weird to be there. Everything looked the same, but everything felt different. The blissfully mundane life I had when I woke up this morning had vanished. It felt like I didn't belong in my house anymore. All the happy, normal, boring things we talked about all morning...oh God how I wish I could go back there now. Chatting about a sip and see party we wanted for Benjamin and who won the gold last night...you have no idea what I'd give to be talking about that shit right now. Now we are talking about tumor shrinking and neurosurgery. Instead of pinning blue cake pops on Pinterest I'm trying to wrap my head around helping my husband fight a brain tumor. And my kids...what do you tell a 2.5 year old about this?? Just hearing her ask for Daddy made my stomach want to flip inside out.
So here I am, at 4 am by his bedside at a local hospital I'm not at all comfortable with him being at, thinking a lot of shit and steering my mind as best I can from even scarier shit. I'm just trying to breath. Trying to take every minute as it comes. Trying to keep my tears at bay and focus on the tasks at hand.
You might be wondering why I'm even writing this right now. Because writing is just what I know to do. When I feel helpless, when I have no control, when I feel the walls around me are crumbling, I write. I've tried crying about it, reasoning with God about it, I even tried cursing at it- as if saying "Fuck this shit" enough would make it go away.
For now I'm going to watch him sleep...something he was scared to do since he was sleeping when this all started. I'm going to get up tomorrow (I'm not actually going to sleep, it's just not going to happen), and figure out what the Hell we're going to do next. I'm going to hug my husband, and make sure he knows that whatever they say, it's going to be okay. Because it is. Because it has to be.
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