Howdy friends, old and new! It's been a few months, which I hate. As someone who really gets a release from writing, not doing so for this long has not boded well for my psyche! Life has been HECTIC ya'll! In any case, I'm back, and hoping to be back a lot more in the coming months.
In case anyone missed the big (BIG) news- we are expecting another little monkey this summer! Yep- another little C to complete our brood. We are beyond excited (and at almost 7 months, I'm REALLY looking forward to the end of summer...what? it's only the end of May? I CAN'T HEAR YOUUUUU! LALALALALA). Ok, my temper tantrum is over. So back to the point at hand...three kids. THREE KIDS PEOPLE!! Of course it hasn't been the best of times for me to be pregnant. Ken has been in a clinical trial at MSKCC since the beginning of February, and the hectic schedule at the beginning of the trial pretty much forced him out on disability for a few months. He's back at work as of this last week, and while it's been nice to feel a little "normal"- being 26-27 weeks pregnant, home with two very busy little people for the first time since before I was showing, has been a real challenge. Of course, it's a challenge for any pregnant Mama with other kids at home, but me being slightly psycho off my meds doesn't really help the situation. Yep, I'm off the loft as I like to say. Our sweet little fellow on the way (oh...did I forget to mention? It's another crazy little BOY!), wasn't exactly a planned sweet little fellow, so dropping the zoloft cold turkey wasn't fun (and really still isn't...no wine? no loft? Yep, I'm off my rocker). I know what you're thinking- why??? WHY C family? Why get pregnant? The kids a miracle, and I'll tell you why...
I've wanted 3 kids forever. In all reality, I wanted 12, but I knew 3 was about as high a number as my hubby was willing to go. Of course, after Ken was diagnosed in 2012, I couldn't even let myself imagine we'd have any more kids. It was off the table. No mas bebe. It crushed me to even think about. We've had a lot of ups and downs over the last (almost) 3 years. Good scans, bad scans, ok scans. We endured the stress of selling and buying homes; which I genuinely did NOT know was THAT stressful until we did it. Maybe it was our life situation at the time that made it so much worse- Ken was working from home full time, couldn't drive, and in all truth was probably still, on some level, recovering from his surgery...and if he wasn't, I was. I lost 8 lbs in the two months it took to sell our house, and put myself in the hospital with a panic attack on the day we went under contract on both homes. Our parents got sick, our parents got better, we finally spent some down time with friends...of course, it was around that time we figured out I was pregnant. I was 3-4 glasses of wine deep on Christmas Eve when I realized I was supposed to get my period that day. Feeling pretty confident that I wasn't expecting, I took a test (I always keep the dollar store ones on hand out of paranoia...rightfully so, apparently). I walked away and enjoyed the company at my house...it was hours later, when I went in my bathroom to brush my teeth, that noticed TWO PINK LINES. I thought maybe I was drunker than I thought I was, and took another test to make sure I wasn't seeing things. Nope. TWO PINK FRICKEN LINES! Our first reaction was not "Yayyyy!" It was more..."OH SHIT." Something we both laugh at now. I'm pretty sure that might have been our reaction even minus the brain tumor growing in Ken's head, but that part certainly didn't help.
It took about a week for things to sink in, but by New Year's Eve, Ken was (drunkenly) excitedly texting his parents that if all went well, they'd be babysitting three kids the following year for count down (we are going to a wedding of some fantastic friends). Just a few weeks later, when we were told about this clinical trial that Ken is currently enrolled in, we also found out that on this particular medicine, baby making is not allowed (it could have, like, 7 heads or something...). And even if he discontinued the medication, isn't allowed for a year or two following...which would bring us over the mid-30's hump, with kids both in the middle of elementary school, and the likelihood of having any at that point was nonexistent. So if it weren't for *someone* up there/out there knowing better than us, the dream third baby would have been an impossibility. I catch myself tearing up at the notion that something I'd always wanted so badly, something I'd given up hope on having, something I thought not really possible; somehow wasn't just possible, he's there...kicking me in the ribs as we speak. Now I just have to get him here safely at the end of the summer (yeah, THAT isn't weighing on my mind, nut job that I am...).
So as you can see, on top of every day busy-ness, we've had a busy year so far. After an intense first round with the clinical trial, we took the opportunity of Ken being home to whisk the kids away to Disney World, we road tripped to see friends in other areas, and Ken fixed up our back yard to be a relaxing oasis. You'd think things would be winding down, but really, they're staying just as busy, which to me, is a Godsend. Idle hands and all...
Now? Now we're gearing up for summer! My sweet baby girl is graduating Pre-K in a couple of weeks (which, being all hormonal, means I tear up a lot...I mean it, A LOT), she's going to camp for the first time the following week, and in a short three months will start Kindergarten. When I say I'm going to be a mess the day the bus rides away with her in it, I mean it ain't gonna be pretty. With a newborn in a carrier, I fully plan to throw the boys ( BOY(S) !!!!!!! I can't even...) in the car and stalk my child to school. Go ahead and laugh, people, someday, it'll be YOU!
I hope everyone out there is doing well! I will give an update with anything Ken related as it comes. For now things have been stable (which even saying out loud gives me the shakes), but we'll give updates as they come. For now, we've signed up to walk in the NYC Brain Tumor Walk at the end of June. I'll give more info on that as I get back into the groove this week ;) Thanks to ALL for the positive vibes we've gotten over the last few months, we are so lucky to know so many great people! XOXO!
It's a living thing...
Showing posts with label brain tumors. Show all posts
Showing posts with label brain tumors. Show all posts
Saturday, May 30, 2015
Sunday, February 8, 2015
IDH what?? IDK!
Alright friends, here's the lowdown...back in October, we found out that Kenny's glioma was once again growing. With the hope that it was growing more slowly, they moved his scans up from every six months to every three. Unfortunately, at the scan in January, they discovered that the growth is happening quickly enough to see after only 3 months. BOO!!!
They let us know that his options, for now, are radiation therapy, or clinical trial drugs. Both sounded pretty scary. However, after lots of research, and information thrown our way, the clinical trial sounded pretty promising. At the very least, attempting it would save him radiation for the time being. The reason his neuro oncologist would really like to push off radiation is because it's a one shot deal...and even then, he said, the results were unpredictable (as in, it may only stop growth for a matter of months or a few years). So here we found ourselves, 2 years after we thought we'd be done talking about it (albeit foolishly), and making more big decisions.
So this past Friday, after multiple trips to Sloan, a few scans and lots of talking about it, Kenny signed on the dotted line. He is now on the fast track to beginning the clinical trial...fast as in he begins on TUESDAY. Yes...as in two days from now. Friday became a whirlwind of meeting doctors, researchers, trial RN's, Oncology pharmacists, and a ton of pre-trial testing (blood, 2 ekg's, echo cardio gram, the works...). By the time we got home Friday night, we were wiped, yesterday we were slightly more awake, and today we're feeling human and ready to prepare. It's going to be an intense 3 month regimen of appointments at Sloan to monitor his body's response, and constant testing to make sure his body is handling it all well. And if any of you know Ken, you know how much he LOVES needles (HA!). It will be a lot of work for Ken, our little family, and the amazing family we have surrounding us that are helping us in every way possible (from kid sitting to massive amounts of moral support). But in the end we're hoping for a big payoff. Nothing ventured, nothing gained, right?
Now for the science-y part of the tale. The hope of this medication is that it stops tumor growth (and maybe even shrink it a little). How?? Well, 70% of Gliomas have recently (recently as in the last 5-7 years) been found to contain a genetic mutation called IDH1. Not only is it in Gliomas, but in a lot of cancers...liver cancer, sarcoma, and a close relative of IDH1 (named IDH2) exists in leukemia. Now, to anyone with a very non science background (myself HUGELY included in this), this is all very confusing, but I'll try my best to keep it in"non science genius" words.
This mutation is a very curious thing. I thought about explaining how the WHOLE thing works, but it would extend beyond my scientific reach to explain it correctly. But the bottom line is that this mutation preys on cells, in essence, that are suffering an identity crisis. These are "primitive" cells that never quite develop, and the mutation helps it develop into cancer/tumors (this is simplifying the concept in a big way, but it's the gist).
Now, the medicine they're testing is promising in some very key ways. Unlike typical chemotherapy, this drug is considered a biologic. As in, it's purpose and intention is not to kill a single cell, but to heal the cells (or in this instance, force them to mature into healthy cells). That's right...the premise and hope for this medication is to treat cancer without killing it. Pretty crazy, right??? Not only that, but it's considered a targeted therapy. Whereas typical chemo would be administered and effect the body systemically (as a whole), this targets only the mutation. We have high hopes for this medication to work, but trying to keep level heads since it's still a very new concept. However, in leukemia patients last year, the clinical trial was found to put almost 50% of patients tested in full remission, without damaging their bone marrow.
I have plenty more I could explain, but Kenny has informed me that what I've said already has probably bored people to tears, so I'll keep the science stuff to a minimum for the time being. However, if you're at all interested, please feel free to read some of the below articles on the topic (he is participating in the trial by Agios).
http://investor.agios.com/phoenix.zhtml?c=251862&p=irol-newsArticle&ID=1829945
http://www.agios.com/pipeline-idh.php
As for every day life, we just keep on, keeping on. If anything the last couple of years, we've learned to live life in between appointments. What else can we do? I'll check in with, well, lots of stuff coming up. It's not exactly how I wanted to get back into writing, but as those brilliant Rolling Stones say, "You can't always get what you want, but if you try sometimes, you find you get what you need." We need some good vibes friends, so send 'em if you got 'em!
They let us know that his options, for now, are radiation therapy, or clinical trial drugs. Both sounded pretty scary. However, after lots of research, and information thrown our way, the clinical trial sounded pretty promising. At the very least, attempting it would save him radiation for the time being. The reason his neuro oncologist would really like to push off radiation is because it's a one shot deal...and even then, he said, the results were unpredictable (as in, it may only stop growth for a matter of months or a few years). So here we found ourselves, 2 years after we thought we'd be done talking about it (albeit foolishly), and making more big decisions.
So this past Friday, after multiple trips to Sloan, a few scans and lots of talking about it, Kenny signed on the dotted line. He is now on the fast track to beginning the clinical trial...fast as in he begins on TUESDAY. Yes...as in two days from now. Friday became a whirlwind of meeting doctors, researchers, trial RN's, Oncology pharmacists, and a ton of pre-trial testing (blood, 2 ekg's, echo cardio gram, the works...). By the time we got home Friday night, we were wiped, yesterday we were slightly more awake, and today we're feeling human and ready to prepare. It's going to be an intense 3 month regimen of appointments at Sloan to monitor his body's response, and constant testing to make sure his body is handling it all well. And if any of you know Ken, you know how much he LOVES needles (HA!). It will be a lot of work for Ken, our little family, and the amazing family we have surrounding us that are helping us in every way possible (from kid sitting to massive amounts of moral support). But in the end we're hoping for a big payoff. Nothing ventured, nothing gained, right?
Now for the science-y part of the tale. The hope of this medication is that it stops tumor growth (and maybe even shrink it a little). How?? Well, 70% of Gliomas have recently (recently as in the last 5-7 years) been found to contain a genetic mutation called IDH1. Not only is it in Gliomas, but in a lot of cancers...liver cancer, sarcoma, and a close relative of IDH1 (named IDH2) exists in leukemia. Now, to anyone with a very non science background (myself HUGELY included in this), this is all very confusing, but I'll try my best to keep it in"non science genius" words.
This mutation is a very curious thing. I thought about explaining how the WHOLE thing works, but it would extend beyond my scientific reach to explain it correctly. But the bottom line is that this mutation preys on cells, in essence, that are suffering an identity crisis. These are "primitive" cells that never quite develop, and the mutation helps it develop into cancer/tumors (this is simplifying the concept in a big way, but it's the gist).
Now, the medicine they're testing is promising in some very key ways. Unlike typical chemotherapy, this drug is considered a biologic. As in, it's purpose and intention is not to kill a single cell, but to heal the cells (or in this instance, force them to mature into healthy cells). That's right...the premise and hope for this medication is to treat cancer without killing it. Pretty crazy, right??? Not only that, but it's considered a targeted therapy. Whereas typical chemo would be administered and effect the body systemically (as a whole), this targets only the mutation. We have high hopes for this medication to work, but trying to keep level heads since it's still a very new concept. However, in leukemia patients last year, the clinical trial was found to put almost 50% of patients tested in full remission, without damaging their bone marrow.
I have plenty more I could explain, but Kenny has informed me that what I've said already has probably bored people to tears, so I'll keep the science stuff to a minimum for the time being. However, if you're at all interested, please feel free to read some of the below articles on the topic (he is participating in the trial by Agios).
http://investor.agios.com/phoenix.zhtml?c=251862&p=irol-newsArticle&ID=1829945
http://www.agios.com/pipeline-idh.php
As for every day life, we just keep on, keeping on. If anything the last couple of years, we've learned to live life in between appointments. What else can we do? I'll check in with, well, lots of stuff coming up. It's not exactly how I wanted to get back into writing, but as those brilliant Rolling Stones say, "You can't always get what you want, but if you try sometimes, you find you get what you need." We need some good vibes friends, so send 'em if you got 'em!
Monday, May 5, 2014
Weird Dreams and Silver Linings
So I had this dream last night...my in-laws, Kenny and I took the kids to Disney World for a long weekend. The kids stayed with Kenny's parent's in their room, and he and I got up before the sun to go to the park early. We rode the monorail, and I remember looking at the empty pools, lake sides, and benches around the seemingly deserted resorts. When we arrived at the park, it was apparent it was going to start raining soon. I remember thinking we should have brought ponchos, because we were only getting to be there for a couple of days, so rain wasn't going to keep us from the magic of Disney World. Then, the sunrise got dark. The wind picked up. I overheard a park worker saying that since the sky was so dark they were going to have fireworks. Making lemonade out of lemons, I suppose. The fireworks began and I started taking pictures, thinking I would show the kids when they got to the park. Just then my in-laws arrived. The kids were still asleep with Aunt Alyssa, and I thought, oh good, they're getting some extra sleep so they can have energy to last the day at the park! It was around this time that I woke up.
Anyone who knows me, personally, knows we've had a crazy year so far. Almost two years after being diagnosed, it finally sank in that Kenny's brain tumor isn't something that's going to go away. Being so focused on surgery, recovery, and the aftermath, we never let ourselves get too far ahead. This last MRI, while still terrific, gave us a heavy dose of reality. The radiologist thought she might have seen ("thought" and "might" being the operative words), some subtle growth (the neurologist, however, says he compared MRI's as far back as December of 2012, and he sees no change...I believe the word he used of the radiologist's report was "dubious"). He said to us, as nonchalantly as though he were telling us it might rain today, that it's always a possibility, with there still being 10% of the tumor being left in, that it will continue to grow. It's not cancerous, and would need to grow a lot more for it to cause any more problems. That's why we do the MRI's. In his words "We might have to deal with again sometime in the future, but that time is not now." Those are all things they've told us all along...just things we never let ourselves think about. A few hours, a serious conversation, and a couple of drinks later, Kenny and I digested this information and realized we still got it good. He's still healthy. It's still not really growing. And this thing isn't going to be the thing that takes him when he's 95 and sipping ensure out of a whisky tumbler.
We had a lot of hopes pinned onto 2014. The smallest (and biggest) of all, would be for it to be a quiet one. Well we know how these things go...we don't get a choice if/when things happen. It's been a doozy so far. Aside from the above, it's been a whirlwind. It's no shock that, after years of resisting doing so, I finally caved and started taking anxiety meds. Best.Decision.Ever. While it would have been lovely to "power through" (yet again), it was seriously shaking my ability to function properly. Hand wringing, pacing, obsessively checking myself for lumps, bumps, and skin lesions, I knew it was time. I still have moments...our plate is a little full at the moment, but overall, I'm able to think much more clearly. I'm able to feel confident that the people we love are in good hands, and will be okay. I'm able to get up each day and keep my kids' lives intact. I can't say it will always be that way, but every day that I can do that feels like a big check mark in the "win" column for me.
Which brings me back to my dream. One of the side effects of the medicine is "weird" dreams. What I'm finding, however, is that my dreams are much more indicative of how I'm feeling. A few nights ago, I dreamt I had a "knock down, drag out" fight with an old friend who disappeared after my kids were born. Never even reached out when she knew everything was going on with Kenny, or when my mom was diagnosed with breast cancer. I've been mad about it for years. While the fight will never happen in real life, I did get some bizarre closure by having it out in my REM cycle. And last night...I think that my dreams were saying that even my subconscious can see a silver lining. That my kids are young enough to not totally understand what's going on, that Kenny and I are in this together, and that sometimes life gets dark and cloudy, but you can still see some beautiful fireworks.
Anyone who knows me, personally, knows we've had a crazy year so far. Almost two years after being diagnosed, it finally sank in that Kenny's brain tumor isn't something that's going to go away. Being so focused on surgery, recovery, and the aftermath, we never let ourselves get too far ahead. This last MRI, while still terrific, gave us a heavy dose of reality. The radiologist thought she might have seen ("thought" and "might" being the operative words), some subtle growth (the neurologist, however, says he compared MRI's as far back as December of 2012, and he sees no change...I believe the word he used of the radiologist's report was "dubious"). He said to us, as nonchalantly as though he were telling us it might rain today, that it's always a possibility, with there still being 10% of the tumor being left in, that it will continue to grow. It's not cancerous, and would need to grow a lot more for it to cause any more problems. That's why we do the MRI's. In his words "We might have to deal with again sometime in the future, but that time is not now." Those are all things they've told us all along...just things we never let ourselves think about. A few hours, a serious conversation, and a couple of drinks later, Kenny and I digested this information and realized we still got it good. He's still healthy. It's still not really growing. And this thing isn't going to be the thing that takes him when he's 95 and sipping ensure out of a whisky tumbler.
We had a lot of hopes pinned onto 2014. The smallest (and biggest) of all, would be for it to be a quiet one. Well we know how these things go...we don't get a choice if/when things happen. It's been a doozy so far. Aside from the above, it's been a whirlwind. It's no shock that, after years of resisting doing so, I finally caved and started taking anxiety meds. Best.Decision.Ever. While it would have been lovely to "power through" (yet again), it was seriously shaking my ability to function properly. Hand wringing, pacing, obsessively checking myself for lumps, bumps, and skin lesions, I knew it was time. I still have moments...our plate is a little full at the moment, but overall, I'm able to think much more clearly. I'm able to feel confident that the people we love are in good hands, and will be okay. I'm able to get up each day and keep my kids' lives intact. I can't say it will always be that way, but every day that I can do that feels like a big check mark in the "win" column for me.
Which brings me back to my dream. One of the side effects of the medicine is "weird" dreams. What I'm finding, however, is that my dreams are much more indicative of how I'm feeling. A few nights ago, I dreamt I had a "knock down, drag out" fight with an old friend who disappeared after my kids were born. Never even reached out when she knew everything was going on with Kenny, or when my mom was diagnosed with breast cancer. I've been mad about it for years. While the fight will never happen in real life, I did get some bizarre closure by having it out in my REM cycle. And last night...I think that my dreams were saying that even my subconscious can see a silver lining. That my kids are young enough to not totally understand what's going on, that Kenny and I are in this together, and that sometimes life gets dark and cloudy, but you can still see some beautiful fireworks.
Tuesday, February 12, 2013
I'm not so broken, after all.
So, there's this pile of pants that had been sitting in our bedroom closet since the beginning of July. They were my "iron pile" of Kenny's work pants that I'd been meaning to get to- but at the end of my pregnancy, putting on flip flops felt like an Olympic event, so on my feet ironing for even 10 minutes wasn't happening. I had planned to iron them many times...before Kenny went back to work from paternity leave (we all know what happened next), then maybe one of the days when I wasn't living here I thought I'd just do it, or maybe before he returned to work after the brain surgery...but I just didn't. I couldn't. That damn pile of pants was the weirdest of small hurdles for me. They stared at me from my closet for months. The last shred of things I was supposed to do before everything started. One day, last week- on my second cup of coffee when I have my ultimate energy buzz- I finally did it. I couldn't stand the thought of peering into that closet one more night before bed and seeing that pile of pants. I dropped Cam off at school, grabbed the ironing board and the pile, and quickly zoomed through the 7 or so pairs. As soon as I was done, I carried them right upstairs and placed them in the closet with the rest of his clothes, where they belonged. I know it sounds stupid (and if not stupid, definitely odd) that it was so hard for me to finally iron those pants- and I honestly have no clue exactly why it was - but I was so excited it was done that I texted my best friend about it. Yes...I texted her that I ironed pants. That sounds boring even to me, but it felt great.
I thought about blogging about it immediately when it was done. But not really knowing the relevance of the unironed pants, it pretty much seemed like I was going to blog about my wifely to do list. Not exactly riveting- not to mention, I really had it in my head that I was done (at least for now) blogging about my tough times. I wanted to go back to fluff. I wanted to write about getting in shape and my cute kids and leave the tough stuff at the back door. Then yesterday, at the gym, I was in the middle of a serious workout, and a song came on my iPod that I've been avoiding for months. I was obsessed with it at the end of my pregnancy, and it reminds me of this amazingly perfect day we had at the beach about 36 hours before Ben was born. It was seriously a perfect day. 80 degrees at the beach, family (and extended family), happy toddler playing in the sand, long stroll along the water with the husband, little man wiggling in my tummy- movie quality beach day. It was the perfect send off to our trio becoming a quad. During the whole ordeal, I often thought of that day, and wished if I could be anywhere in my life, it'd be that day. Hearing the start of that song in my iPod usually triggers a "stabbing in the heart" effect, which is usually what prompts me to quickly change the song...but yesterday, on the rowing machine (at full resistance, thank you very much), I didn't change it. I thought of that day and it didn't hurt (as much). And then I realized, I'm not as irretrievably broken as I thought.
I'll back up. I know I mentioned that I was having a hard time. But seriously, I was having a hard time. I felt sad (like cry in the car every time I'm alone sad), and anxious, and was only compounded by me feeling terrible that I couldn't feel happy that everything (at least mostly) turned out okay. I felt like I was a broken person. I tried to cut myself slack, it'd only been a few months and I was still adjusting to everything and processing everything that had happened (because when you're in it, you certainly can't process it), but it felt endless. But then the pants...and then the song...and then I realized I haven't cried in almost two weeks. I realized I was feeling better...still cautious...still nervous...but better. I'm healing (YAY!). It might be slower than I'd like, but considering that 6 weeks ago I felt like a broken person who might never feel totally happy again, the epiphany gave me boat loads of hope. If I could give myself a big fat hug, I would.
And back to that workout (it hurts so good, today!)...it's part of a personal challenge to get healthy and look/feel well by my birthday. I didn't really publicize it- not because I don't intend to follow through, but for some reason it feels intensely personal this time. I'm not doing it because I have a major milestone or because I have a dress I want to look good in (like last time), but because I just want to feel my best. I'm on a mission to be the best me I can be. One thing I realized through this process was that I sacrificed a lot of who I am over the years- for a lot of reasons, but mostly, because I felt ashamed. I can't say why. I just did. I didn't like myself, and I assumed no one else liked me either. By my mid-twenties, I think I was a pretty well balanced version of myself...some of the quirk without all the drama (and more selective of my friends). I wasn't "all the way" there though. I still felt embarrassed about some parts of myself...like the fact that even though I was pretty good at my job and I did like it, most of my talents and passions were creative. Growing up I'd wanted to act, but wanted so much to be "like everyone else" and lacking the confidence to just be myself, I never went for it. It's true...you regret more what you didn't do than what you did. I regret that I never even tried. Now, at 31, that ship has sailed, but I'm done being embarrassed of who I am. I figure to be the best role model for my kids, I need to be the best Megan first. It's not going to be a "thing" that I write about every week, but I'm sure I'll mention it sometimes. In the mean time, I hope to keep the healing coming. Wish us luck!
Monday, October 1, 2012
Home just in time to go back...
Mornin' all- I don't have a ton of time today, but I just wanted to write a quick update.
Remember how last week I mentioned that Kenny had been sick all week? His fever had subsided, he was regaining his appetite, but that rash just wouldn't quit. So last week we went to the GP two more times trying to find out what was happening. Through a couple of urine/blood tests, we figured out that his creatinine levels were elevated (that's protein in the blood)- which indicated that his kidneys weren't functioning at their best (at this point they were around a "2"- the highest it should be is 1.3 I think). Finally, Wednesday, he said he felt we should see a nephrologist to have his kidneys checked out -- at this point we'd seen doctors almost every day for a week and a half, and getting tired of adding doctors to the mix. Kenny called his neurosurgeon's assistant and expressed his concerns, and as we still hadn't gotten to the bottom of the rash (and everything that happened the week before), she had us come into Sloan Thursday morning for tests. We met a wonderful GP there who did the exam and scheduled ultrasounds for the kidneys and liver for Friday should we need them (just to make sure we were on the ball since he is scheduled for surgery Wednesday). About an hour after we trekked home from the city they called and said he needed to get back to Sloan to be admitted, because his creatinine levels were now up to 2.9 (so his kidneys were clearly not doing great at that point).
From there was a total roller coaster...with IV hydration, his creatinine levels did start to drop over the first night- not to a totally normal level, but they were definitely coming down. However, once his creatinine dropped, his potassium levels jumped. I'm sure a lot of you don't know a lot about this kind of stuff (I sure didn't before now), but if your potassium levels climb too high, it interferes with the electrical rhythms of the heart. 3.5-5 is normal, 6 is pretty bad, 7 is severe. At one point Kenny's potassium was at a 6.2. So the doctors and nurses did everything they could to help lower that level (I'd go into detail but it'd take a while and I'd probably lose you somewhere in the explanation of how it works). We had some hope on Friday night that the levels were totally normalizing, but early Saturday morning the potassium jumped back up. They did another round of their treatment plan and later Saturday the number had gone back down to 4.7 (phew!). However, at that point, Kenny's anxiety hit the roof, and they could no longer get an IV in or blood out (when you get anxious, your veins constrict). It took 4 hours and the aid of some anti anxiety meds, but they were finally able to get the draw they needed to test his levels and get the IV in. They must have been pretty nervous because a test that usually takes 90 minutes to get back was completed in 20 minutes...and thankfully, the numbers, even without IV fluid, were still down. They ran one more test on Sunday morning to be sure his kidneys were doing their things minus IV intervention (they let him sleep without the IV in overnight), one more EKG to make sure his heart rhythms were normal, and we were on our way. It was a crazy few days, lots of ups and downs and ins and outs, but as I like to say, we're generally pretty fortunate in our misfortune...
The care at Sloan was unlike anything I'd ever seen. His nurses were on top of his every move (and we even knew one of them- we hung out with her a bit down in Manasquan the summer we did the beach house- small world, and VERY comforting to see a friendly face!), and he saw an insane amount of doctors who's only goal was to make him well. From my count (and I'm sure I didn't count them all...) he met with 5 regular doctors (interns/residents/attendings in all), 3 renal doctors, 2 dermatologists, and his neurosurgeon came down with one of her colleagues (I kind of feel like I should be ending this with "and a partridge in a pear tree..."). They were all very accommodating, very friendly, and on top of their game so far as we could tell.
Kenny's former colleague happens to live two blocks from the hospital (it's seriously a 4 minute walk, which is about how long it takes me to get from my bedroom to my basement at home, it's that close), and offered his place up for us to stay. My mom came up and kept Cam at our house, and my SIL and FIL brought Benny boy up to NY so I could go back and forth to feed him (and so we could take turns watching him). Another coworker loaned us pack'n'play sheets for our stay, and countless friends and coworkers checked in with me, round-the-clock, to see how Kenny was doing. I cannot tell you how much this helped us...I'll never ever forget the kindness and generosity of those around us during this time.
So we got home yesterday, late afternoon...just in time for us to eat dinner, collapse, and wake up with a to-do list a mile long...because hey...we go back to Sloan tomorrow for Kenny's pre-op MRI, and Wednesday is the big day. As you can imagine, we're all a little crazed right now, between the 3 night hospital stay over the weekend and the bigger one starting in less than 48 hours. I probably won't write before then, so in the mean time, wish us luck! I'll be back in a few days to let you know how things go. Thank you so much to all who have been thinking of us, praying for us, and checking in with us this whole time-- it's been a huge comfort to us to know so many people have our backs. XOXO!
Remember how last week I mentioned that Kenny had been sick all week? His fever had subsided, he was regaining his appetite, but that rash just wouldn't quit. So last week we went to the GP two more times trying to find out what was happening. Through a couple of urine/blood tests, we figured out that his creatinine levels were elevated (that's protein in the blood)- which indicated that his kidneys weren't functioning at their best (at this point they were around a "2"- the highest it should be is 1.3 I think). Finally, Wednesday, he said he felt we should see a nephrologist to have his kidneys checked out -- at this point we'd seen doctors almost every day for a week and a half, and getting tired of adding doctors to the mix. Kenny called his neurosurgeon's assistant and expressed his concerns, and as we still hadn't gotten to the bottom of the rash (and everything that happened the week before), she had us come into Sloan Thursday morning for tests. We met a wonderful GP there who did the exam and scheduled ultrasounds for the kidneys and liver for Friday should we need them (just to make sure we were on the ball since he is scheduled for surgery Wednesday). About an hour after we trekked home from the city they called and said he needed to get back to Sloan to be admitted, because his creatinine levels were now up to 2.9 (so his kidneys were clearly not doing great at that point).
From there was a total roller coaster...with IV hydration, his creatinine levels did start to drop over the first night- not to a totally normal level, but they were definitely coming down. However, once his creatinine dropped, his potassium levels jumped. I'm sure a lot of you don't know a lot about this kind of stuff (I sure didn't before now), but if your potassium levels climb too high, it interferes with the electrical rhythms of the heart. 3.5-5 is normal, 6 is pretty bad, 7 is severe. At one point Kenny's potassium was at a 6.2. So the doctors and nurses did everything they could to help lower that level (I'd go into detail but it'd take a while and I'd probably lose you somewhere in the explanation of how it works). We had some hope on Friday night that the levels were totally normalizing, but early Saturday morning the potassium jumped back up. They did another round of their treatment plan and later Saturday the number had gone back down to 4.7 (phew!). However, at that point, Kenny's anxiety hit the roof, and they could no longer get an IV in or blood out (when you get anxious, your veins constrict). It took 4 hours and the aid of some anti anxiety meds, but they were finally able to get the draw they needed to test his levels and get the IV in. They must have been pretty nervous because a test that usually takes 90 minutes to get back was completed in 20 minutes...and thankfully, the numbers, even without IV fluid, were still down. They ran one more test on Sunday morning to be sure his kidneys were doing their things minus IV intervention (they let him sleep without the IV in overnight), one more EKG to make sure his heart rhythms were normal, and we were on our way. It was a crazy few days, lots of ups and downs and ins and outs, but as I like to say, we're generally pretty fortunate in our misfortune...
The care at Sloan was unlike anything I'd ever seen. His nurses were on top of his every move (and we even knew one of them- we hung out with her a bit down in Manasquan the summer we did the beach house- small world, and VERY comforting to see a friendly face!), and he saw an insane amount of doctors who's only goal was to make him well. From my count (and I'm sure I didn't count them all...) he met with 5 regular doctors (interns/residents/attendings in all), 3 renal doctors, 2 dermatologists, and his neurosurgeon came down with one of her colleagues (I kind of feel like I should be ending this with "and a partridge in a pear tree..."). They were all very accommodating, very friendly, and on top of their game so far as we could tell.
Kenny's former colleague happens to live two blocks from the hospital (it's seriously a 4 minute walk, which is about how long it takes me to get from my bedroom to my basement at home, it's that close), and offered his place up for us to stay. My mom came up and kept Cam at our house, and my SIL and FIL brought Benny boy up to NY so I could go back and forth to feed him (and so we could take turns watching him). Another coworker loaned us pack'n'play sheets for our stay, and countless friends and coworkers checked in with me, round-the-clock, to see how Kenny was doing. I cannot tell you how much this helped us...I'll never ever forget the kindness and generosity of those around us during this time.
So we got home yesterday, late afternoon...just in time for us to eat dinner, collapse, and wake up with a to-do list a mile long...because hey...we go back to Sloan tomorrow for Kenny's pre-op MRI, and Wednesday is the big day. As you can imagine, we're all a little crazed right now, between the 3 night hospital stay over the weekend and the bigger one starting in less than 48 hours. I probably won't write before then, so in the mean time, wish us luck! I'll be back in a few days to let you know how things go. Thank you so much to all who have been thinking of us, praying for us, and checking in with us this whole time-- it's been a huge comfort to us to know so many people have our backs. XOXO!
Monday, September 24, 2012
Surgery has been postponed
I'm tired. Like, up until 6 am drinking in Atlantic City and sleeping for 4 hours before driving home and taking care of two kids tired; minus all that pesky fun. Kenny has been sick for over a week now, starting with a rash, peaking with fevers about 102.5 and chills, tapering back off to a rash. Surgery has been postponed for another week, but if he can't get these thing under control, I guess it could be put off until he's clear of any infection.
Of course, this was just the icing on the cake of already feeling scared and nervous 24/7; on top of worrying about him being sick, I have to worry about the rest of us, especially Ben, getting sick. I think we're all a bit worn out, but now that the fever has (God willing/knock wood) subsided, I'm really hoping things look up and surgery can go on as (now) scheduled on October 3. I'm trying to stay positive, but it's been really difficult this last week. While surgery has actually kind of been the last thing on our minds with him feeling so sick, seeing him so down in the dumps and barely able to get off the couch had us all in agony. In previous weeks, while we were definitely scared and feeling the weight of everything going on, we kind of had a rhythm going. Kenny would work from home, anyone who was around would help out, and while we had some difficult conversations, we had plenty light hearted banter and every day talk keeping us chipper. This week was just all down...he went back to sleeping on the couch with someone staying by him, barely eating, and not doing...anything. Even writing that has me feeling like crap. Thankfully, the last day or two he's been able to get up and about a little bit with the fever gone, which has definitely helped morale.
I've spent a lot of time being angry (this obviously isn't news). I've missed my life so much it feels like it physically hurts. I miss everything about my house and living in it; our morning routines, our dinner time catch up, even just catching up on the DVR before we doze off at night. I miss my dog so incredibly much; her sweet doggy face, how she would lay on our feet at night, our evening walks together, and just having her around. All the simple little things about our lives together. I miss when my biggest worry was going to be how I was going to lose my baby weight or find time to write. I've been angry about losing all of that, about losing our independence. I know Kenny has felt the same, we've lamented about it, got mad about it, and cried about it. Sometimes, it seems we've lost sight of what really matters...
So the last few days I've been trying to change my attitude. I've been thanking God for every beautiful day. I've been trying to focus on the fact that our lack of independence is (hopefully) a temporary thing; and even if it isn't, we're fortunate enough to have all of the love, support and help we have. We've got two amazing babies, that (God willing and the Creek don't rise) are happy, healthy and loved so very much. We have soooo many wonderful people pulling for us and offering anything and everything to help. We've got good insurance, which affords us a wealth of opportunity to help Kenny get well; and, most importantly, as a friend of Kenny's said to him the other day, he's got this. This whole process has been terrifying...and pardon my French when I tell you that finding out about this tumor was a total mindfuck. There we were, just living out our lives, just had another baby barely home from the hospital; I mean, what sounds nicer than a happily married young(ish) couple expanding their family? BAM! Brain tumor. Except we know now it wasn't really that way, it'd really been there growing slowly for a very long time; but it kind of felt like an egg sized terrorist had just exploded an iud in my life. Mother effer. But one of the things I've always loved about Kenny is his confidence. Sure, it's caused a few good arguments (no one is ALWAYS right, dude!), but I've always admired his intelligence, his ambition, and how sure of himself he is...so yeah...he's got this.
I will continue to update when I get a chance! As always, many thanks to all for the continued thoughts and prayers- keep 'em comin'! XOXO
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