Well, we seem to be following a 'let's do our major life events in contingency with Holidays,' theme. First, Alaine was born on Thanksgiving.
We got our date for the study at NIH and the subsequent surgery. We'll report bright and early on Valentine's Day for testing for the protocol, with the surgery to follow the next week.
Andy's first response was, "Nice! A cheap date." Then he thought about it and said, "No.... NOT a cheap date. NOT at all...." ;)
I'm rather relieved to not be doing things on my birthday as I anticipated. The grand 3-0 can blow in quietly with balloons rather than major surgery. I'm also glad Alaine will be a little bit bigger before we head out for such an adventure (she'll be coming with us. The big girls will be staying with Papa and Nonna here at home).
It's good to have a date and settle in. Now I feel like I can just do Christmas and enjoy. Just hoping that there aren't any 'major life events' waiting to jump out and surprise us for Christmas. I'm ok with having a sweet, quiet, family Christmas. One that's completely health related surprise or curve ball free would be extra wonderful
I'm sure Andy and I will find a way to make this little trip all feel very romantic in the spirit of St. Valentine. Maybe we can have a candlelight dinner in the cafeteria? A stroll hand in hand down the corridors of the National Institute of Health? Oh the possibilities...
Really though, getting this thing taken care of so that I can go on to spend many, many years with the love of my life and my beautiful girls without Tomas the Tumah sounds like the best Valentine anybody ever gave me.
Saturday, December 18, 2010
Tuesday, November 30, 2010
The REAL good stuff--Alaine
There was this perfect moment on Thanksgiving morning right after Alaine was born. The labor was over. The snow was falling. And I looked over into the isolette that had been sitting empty for 36 hours and saw this beautiful baby, wide-eyed, round head, pink cheeks. Perfection. A few moments later, she was laid on my chest and I was wholly overwhelmed with love.
I didn’t believe throughout my entire pregnancy that it could be real. That I could really have a perfect little person growing inside of me. Our miscarriage last year shook my confidence, and then the discovery of Tomas and the myriad of other ‘not quite right’ health issues that cropped up only shook me more. The only time that I truly waited with excited expectation was during and immediately following ultra-sounds. The rest of the time a large part of me was in a state of protective ambivalence. If I didn’t think about what was at stake, or at least if I didn’t fully grasp the reality of it, maybe if I lost it, it wouldn’t hurt so much.
As we prepared more and more for the birth of baby, taking precautions that startled me and made me face the reality that this pregnancy was unique and that this labor and delivery would have to be too, made me feel more secure in some ways, and more frightened in others.
And then there was our luck that ran through to the end.
We were scheduled to go in to begin the induction on Monday the 22nd. I got myself as mentally ready as I could for that, and when Monday dawned, I had on my game face.
Then it started snowing…. And snowing…. And snowing. It didn’t stop. We read weather reports. We watched news. I called my doctor and asked what to do. The first answer I got surprised me: Just wait til next week. Next WEEK?! Didn’t we have a PLAN here? I wasn’t sure where my doctor was coming from. We’d had this plan the whole time—Induce early. IT was a plan that I had to work pretty hard to wrap my head around as I got used to the ‘wait and go late’ process with Carolyn and Abigail.
When I was finally able to speak to my doctor I was relieved that she told me that they wanted to get me in as soon as it was safe. The plans and the reasoning behind them hadn’t changed, but our physical safety on the road to Seattle was also being taken into account. She said if we found a window, to come in.
Tuesday it was clear and cold. By the afternoon, even the unpracticed methodology of the state of Washington’s DOT was able to clear the roads enough for us to feel ok about going in. So we did.
On the way, Andy noticed the steering wheel was pulling to the left. When we got to the parking garage we saw that we had an extremely underinflated tire.
That’s right. We basically got a flat tire on the way to the hospital.
We went to the cafeteria to eat some really bad cafeteria food once we got there to give L&D a chance to get ready for us and then we were admitted to our room. All of the stress got to me at that point. The room didn’t feel right. My gown didn’t fit right. Nothing felt comfortable and I knew I was going to be there for a while and I sobbed. Andy got me put back together and I got my head back in the game, but there for a second, I was beside myself.
The induction…. The induction was awful. Maybe I’m a weenie, though having gone through two previous births with no meds at all, I don’t think so. But it was awful. They placed the medication that was supposed to help my cervix ripen and almost immediately I was in pain. I also started having contractions. I had them all night the first night. I was able to breathe through them, but there was no denying that they hurt and they most certainly FELT like labor to me. I had them all day the next day and then on into the evening before it was officially deemed that I was ‘in early labor.’ The whole first 24 hours, I was convinced I was going to be sent home. I wasn’t making progress (I kept thinking, “I never make progress, how will we know if this is any different than my other ‘early labor processes.”). I asked question after question of nurses and doctors about whether my body could do this given the way it normally labors. I relied on the gentle counsel of the labor and delivery nurses who took care of me—and all of them were superb. They listened to my anxieties and reassured me over and over and over again. But mostly. It just hurt. And it didn’t feel like it hurt for a purpose since this question of ‘this might not work and we might send her home’ still lingered.
The evening after the 2nd dose of Cervidil was placed things started to pick up. When I finally decided to be checked I was at 2 centimeters and all of a sudden people started talking as if I was having a baby in the immediate future and not just in shades of vague possibility. I was told I could have the epidural placed soon. People started placing bets on when I’d deliver. It was go time. And THAT… THAT was the best pain medicine in the world. I mentally shifted from the place I’d been in since weeks before the induction of not being able to see past the beginning of the labor, to imagining meeting my baby in a matter of hours.
Also at that point, the pain meds that I had cheerfully foregone the other two times around were sounding pretty darned good.
The delightfully Austrian anesthesiologist was on call that night and he was the one who’d taken my case on initially. He and his resident—a guy with a scraggly beard who lit up when he heard Andy was in the Navy, and spent the time it took him to place the epidural swapping sea stories with Andy—put that part of the plan in place and I came to find that I rather liked the epidural. It sure beat the 24 hours of pain and contractions I’d had up to that point. It was also one of the key ingredients of the plan drawn up by my fabulous and amazing doctor. Epidural = less pain and stress for Mommy = hopefully suppressing any hormonal surges that Tomas might get kicked into from those factors as well as making it more likely that I could labor without pushing (another factor in hopefully keeping Tomas neutralized).
I actually slept on and off for a few hours after I got the epidural. I could still feel the contractions, but they didn’t hurt, and for the first time in the whole process I could and did relax. When I woke up, I looked outside at the snow that was falling and piling up and mused at what a beautiful (early) Thanksgiving morning it was.
Things didn’t pick up super quickly, and in fact, my contractions actually started getting further apart rather than closer together, so they upped the pitocin that they’d started when it was decided that it was ‘go’ time. I was worried that we were headed backwards and got agitated about my progress and started fretting about different possibilities. I was checked again and was at 4 cm. It was hypothesized that maybe this time I would labor ‘like normal’ without the super-fast progress that I normally experience, but the doctor also reported that my bag of waters was ‘bulging’ and that once that broke things might speed up. Sure enough, she left and with the next contraction I felt pressure and then my water broke. In the time it took for the doctor to make it back to check on me again, I’d progressed to 6 cm and the nurse said, “20 minutes from 4-6—if you do that 2 more times, you’ll be complete in 40 minutes.
And that was when I showed them all that I was serious about my labors progressing quickly after a certain point. Much less than 40 minutes had gone by when I knew I was fully dilated and when I was having to suppress the urge to push. The chief resident commented, “So THIS is what all the hype was about—You weren’t kidding about going fast!!!” My team was READY though and in seconds the room was full.
And I do mean full.
My nurse, who’d been staying pretty close for most of the ‘go time’ scenario was soon joined by another nurse and the resident who’d been checking on me all along, as well as the chief resident, and at times the attending on call (my incredible and amazing doctor was being paged like crazy at this point). Two pediatricians came in, along with a nurse for baby. Way back in the back of the room, Austrian Epidural guy and Navy doctor Epidural guy casually lounged around. Catching sight of them caught me off guard a couple of times as I would puzzle through why they were there and remember that it was because I had a crazy tumor and they were there in case of a hypertensive crisis.
Throughout this time, my nurse—who was absolutely incredible, by the way—was talking me through the contractions that I was having and helping me to resist the urge to push. In case you were wondering, NOT pushing during labor is, in my humble opinion MUCH HARDER than pushing ever was for me. I was also given one more really special, eleventh-hour cocktail of drugs to keep me as pain free and relaxed as possible.
Finally my doctor slid into the room, and the party really got started. I was directed through a couple of tiny pushes. I remember hearing the chief resident comment on how strong my uterus was and feeling a little proud. And then he got the forceps and with the help of the resident who’d been with me all night, they delivered Alaine. I could feel her moving right to the end and could feel her move down with each contraction which was really cool considering I could feel those sensations but without pain.
She was born, and there was a lusty cry, and I was done and she was here. The beautiful moment of seeing her perfect little body laying under the lights in the warmer came to pass and she was placed on my chest.
I’d worried for months that because of my ‘protective ambivalence’ and my focus on addressing Tomas, and just all of the emotions and twists and turns we’ve been through in these last nine months, that I wouldn’t feel that rush of love immediately. I worried that she would feel foreign and I would feel detached and those things would break my heart.
That didn’t happen though. I was and am swept up in rapture and delight at this beautiful little creature. Her name means ‘little rock’ and she has been that. She is a steady point of joy for me. I am so very glad that she is here and that we’re beginning the amazing journey of life with three exquisite daughters. She IS real. The joy of her being is every bit as real and consuming as the scary and hard things have been up to this point. I’m relieved to find as much reality in the good and pure and wonderful which encompass her joining our family, as there has been in the hard and scary and unknown. She is real and substantial and I love her.
I didn’t believe throughout my entire pregnancy that it could be real. That I could really have a perfect little person growing inside of me. Our miscarriage last year shook my confidence, and then the discovery of Tomas and the myriad of other ‘not quite right’ health issues that cropped up only shook me more. The only time that I truly waited with excited expectation was during and immediately following ultra-sounds. The rest of the time a large part of me was in a state of protective ambivalence. If I didn’t think about what was at stake, or at least if I didn’t fully grasp the reality of it, maybe if I lost it, it wouldn’t hurt so much.
As we prepared more and more for the birth of baby, taking precautions that startled me and made me face the reality that this pregnancy was unique and that this labor and delivery would have to be too, made me feel more secure in some ways, and more frightened in others.
And then there was our luck that ran through to the end.
We were scheduled to go in to begin the induction on Monday the 22nd. I got myself as mentally ready as I could for that, and when Monday dawned, I had on my game face.
Then it started snowing…. And snowing…. And snowing. It didn’t stop. We read weather reports. We watched news. I called my doctor and asked what to do. The first answer I got surprised me: Just wait til next week. Next WEEK?! Didn’t we have a PLAN here? I wasn’t sure where my doctor was coming from. We’d had this plan the whole time—Induce early. IT was a plan that I had to work pretty hard to wrap my head around as I got used to the ‘wait and go late’ process with Carolyn and Abigail.
When I was finally able to speak to my doctor I was relieved that she told me that they wanted to get me in as soon as it was safe. The plans and the reasoning behind them hadn’t changed, but our physical safety on the road to Seattle was also being taken into account. She said if we found a window, to come in.
Tuesday it was clear and cold. By the afternoon, even the unpracticed methodology of the state of Washington’s DOT was able to clear the roads enough for us to feel ok about going in. So we did.
On the way, Andy noticed the steering wheel was pulling to the left. When we got to the parking garage we saw that we had an extremely underinflated tire.
That’s right. We basically got a flat tire on the way to the hospital.
We went to the cafeteria to eat some really bad cafeteria food once we got there to give L&D a chance to get ready for us and then we were admitted to our room. All of the stress got to me at that point. The room didn’t feel right. My gown didn’t fit right. Nothing felt comfortable and I knew I was going to be there for a while and I sobbed. Andy got me put back together and I got my head back in the game, but there for a second, I was beside myself.
The induction…. The induction was awful. Maybe I’m a weenie, though having gone through two previous births with no meds at all, I don’t think so. But it was awful. They placed the medication that was supposed to help my cervix ripen and almost immediately I was in pain. I also started having contractions. I had them all night the first night. I was able to breathe through them, but there was no denying that they hurt and they most certainly FELT like labor to me. I had them all day the next day and then on into the evening before it was officially deemed that I was ‘in early labor.’ The whole first 24 hours, I was convinced I was going to be sent home. I wasn’t making progress (I kept thinking, “I never make progress, how will we know if this is any different than my other ‘early labor processes.”). I asked question after question of nurses and doctors about whether my body could do this given the way it normally labors. I relied on the gentle counsel of the labor and delivery nurses who took care of me—and all of them were superb. They listened to my anxieties and reassured me over and over and over again. But mostly. It just hurt. And it didn’t feel like it hurt for a purpose since this question of ‘this might not work and we might send her home’ still lingered.
The evening after the 2nd dose of Cervidil was placed things started to pick up. When I finally decided to be checked I was at 2 centimeters and all of a sudden people started talking as if I was having a baby in the immediate future and not just in shades of vague possibility. I was told I could have the epidural placed soon. People started placing bets on when I’d deliver. It was go time. And THAT… THAT was the best pain medicine in the world. I mentally shifted from the place I’d been in since weeks before the induction of not being able to see past the beginning of the labor, to imagining meeting my baby in a matter of hours.
Also at that point, the pain meds that I had cheerfully foregone the other two times around were sounding pretty darned good.
The delightfully Austrian anesthesiologist was on call that night and he was the one who’d taken my case on initially. He and his resident—a guy with a scraggly beard who lit up when he heard Andy was in the Navy, and spent the time it took him to place the epidural swapping sea stories with Andy—put that part of the plan in place and I came to find that I rather liked the epidural. It sure beat the 24 hours of pain and contractions I’d had up to that point. It was also one of the key ingredients of the plan drawn up by my fabulous and amazing doctor. Epidural = less pain and stress for Mommy = hopefully suppressing any hormonal surges that Tomas might get kicked into from those factors as well as making it more likely that I could labor without pushing (another factor in hopefully keeping Tomas neutralized).
I actually slept on and off for a few hours after I got the epidural. I could still feel the contractions, but they didn’t hurt, and for the first time in the whole process I could and did relax. When I woke up, I looked outside at the snow that was falling and piling up and mused at what a beautiful (early) Thanksgiving morning it was.
Things didn’t pick up super quickly, and in fact, my contractions actually started getting further apart rather than closer together, so they upped the pitocin that they’d started when it was decided that it was ‘go’ time. I was worried that we were headed backwards and got agitated about my progress and started fretting about different possibilities. I was checked again and was at 4 cm. It was hypothesized that maybe this time I would labor ‘like normal’ without the super-fast progress that I normally experience, but the doctor also reported that my bag of waters was ‘bulging’ and that once that broke things might speed up. Sure enough, she left and with the next contraction I felt pressure and then my water broke. In the time it took for the doctor to make it back to check on me again, I’d progressed to 6 cm and the nurse said, “20 minutes from 4-6—if you do that 2 more times, you’ll be complete in 40 minutes.
And that was when I showed them all that I was serious about my labors progressing quickly after a certain point. Much less than 40 minutes had gone by when I knew I was fully dilated and when I was having to suppress the urge to push. The chief resident commented, “So THIS is what all the hype was about—You weren’t kidding about going fast!!!” My team was READY though and in seconds the room was full.
And I do mean full.
My nurse, who’d been staying pretty close for most of the ‘go time’ scenario was soon joined by another nurse and the resident who’d been checking on me all along, as well as the chief resident, and at times the attending on call (my incredible and amazing doctor was being paged like crazy at this point). Two pediatricians came in, along with a nurse for baby. Way back in the back of the room, Austrian Epidural guy and Navy doctor Epidural guy casually lounged around. Catching sight of them caught me off guard a couple of times as I would puzzle through why they were there and remember that it was because I had a crazy tumor and they were there in case of a hypertensive crisis.
Throughout this time, my nurse—who was absolutely incredible, by the way—was talking me through the contractions that I was having and helping me to resist the urge to push. In case you were wondering, NOT pushing during labor is, in my humble opinion MUCH HARDER than pushing ever was for me. I was also given one more really special, eleventh-hour cocktail of drugs to keep me as pain free and relaxed as possible.
Finally my doctor slid into the room, and the party really got started. I was directed through a couple of tiny pushes. I remember hearing the chief resident comment on how strong my uterus was and feeling a little proud. And then he got the forceps and with the help of the resident who’d been with me all night, they delivered Alaine. I could feel her moving right to the end and could feel her move down with each contraction which was really cool considering I could feel those sensations but without pain.
She was born, and there was a lusty cry, and I was done and she was here. The beautiful moment of seeing her perfect little body laying under the lights in the warmer came to pass and she was placed on my chest.
I’d worried for months that because of my ‘protective ambivalence’ and my focus on addressing Tomas, and just all of the emotions and twists and turns we’ve been through in these last nine months, that I wouldn’t feel that rush of love immediately. I worried that she would feel foreign and I would feel detached and those things would break my heart.
That didn’t happen though. I was and am swept up in rapture and delight at this beautiful little creature. Her name means ‘little rock’ and she has been that. She is a steady point of joy for me. I am so very glad that she is here and that we’re beginning the amazing journey of life with three exquisite daughters. She IS real. The joy of her being is every bit as real and consuming as the scary and hard things have been up to this point. I’m relieved to find as much reality in the good and pure and wonderful which encompass her joining our family, as there has been in the hard and scary and unknown. She is real and substantial and I love her.
Monday, November 22, 2010
NO MORE INTERESTINGNESS
*sigh*
We're supposed to go in to Labor and Delivery this evening for the induction.
I came down with a head cold this weekend....
And...
It's snowing. It never snows here. It's sticking. It's accumulating. Quickly. When it does snow here, it rarely sticks for long. It's dumping from here to Seattle where I'm delivering. And it's supposed to continue snowing all day and stay cold which means it's not going anywhere.
It's a two hour drive to the hospital.
I'm waiting to hear if they're going to postpone the induction or not. I'm hoping that they do. On the other hand, even though I typically go late, I'm nervous that I'll end up going into labor on my own and need to get there anyway.
I'm all for looking at life as a grand adventure. And I took my pastor's message seriously yesterday--I'm trying to use the flash light of gratefulness to look at my life rather than seeing everything through dark glasses (which is why I went outside and made snow angels with the girls).
But it's time for things to not be interesting. It's time for a clear path. It's time to get baby here safely with no more curves or interesting turns of events.
Can I get some people praying on that one, please?
We're supposed to go in to Labor and Delivery this evening for the induction.
I came down with a head cold this weekend....
And...
It's snowing. It never snows here. It's sticking. It's accumulating. Quickly. When it does snow here, it rarely sticks for long. It's dumping from here to Seattle where I'm delivering. And it's supposed to continue snowing all day and stay cold which means it's not going anywhere.
It's a two hour drive to the hospital.
I'm waiting to hear if they're going to postpone the induction or not. I'm hoping that they do. On the other hand, even though I typically go late, I'm nervous that I'll end up going into labor on my own and need to get there anyway.
I'm all for looking at life as a grand adventure. And I took my pastor's message seriously yesterday--I'm trying to use the flash light of gratefulness to look at my life rather than seeing everything through dark glasses (which is why I went outside and made snow angels with the girls).
But it's time for things to not be interesting. It's time for a clear path. It's time to get baby here safely with no more curves or interesting turns of events.
Can I get some people praying on that one, please?
Thursday, November 18, 2010
And Then I Fell...
I was undone by a yellow doll-house accessory. A teeny tiny table or some sort of thing. The girls were upstairs dripping dry from their bath and waiting for the brush that I'd come down to retrieve and I stepped down on a "Holy cow that's sharp," thing and I twisted around, and somehow managed to land on my rear end and not my belly, but I came down hard enough for it to hurt, and for the wind to be knocked out of me, and for me to know that I needed to call Labor and Delivery and I reallydidnotwanttohavetocallLaborandDelivery.
My first thought was, "Ow. And Oof. And Oh." My second thought was, "Dang it, I have to call and what are they going to tell me to do?" And my third thought was, "There's a football game tomorrow at UW.... My doctor will be out of town.... This cannot go awry."
UW's Labor and Delivery predictably suggested that though I hadn't fallen on my belly and though as of yet I wasn't contracting or bleeding, that I should come in and be monitored. Which really wasn't a good thing because after all they're 2 hours away and Andrew was on watch. And how in the heck was this all going to work?
All of which I said to the very nice L&D nurse and she acquiesced to the possibility of my going in to our own Labor and Delivery on base for monitoring with the plan to head south to Seattle if anything looked peculiar. So that's what I determined to do. Then I just had to call and coordinate that with our L&D, find someone to take the kiddos, and call my husband on watch and get there. Which.... all really wasn't that easy.
After a couple of phone calls, I found a friend from church to come be with the girls who were all ready for bed (but had, with almost no prompting from me, also gotten ready for the contingency of coming with Mommy by putting on pantsy pajamas, and shoes and socks and packing their own quiet bag. I was so blown away by their responsibility and concern for Mommy last night). I called Andrew and he made it home in such a short time that I don't want to think about how fast he must have been going. And with everything in place we went to the Labor and Delivery on base.
When we got to base, Andy realized he didn't have his military ID OR his drivers license. So we showed the guard mine and tried to explain. Except they didn't want to let us explain. Finally Andy said, "PLEASE LISTEN. She's 38 weeks pregnant and we have an emergency. We need to get to Labor and Delivery NOW. I left my wallet somewhere in the hurry to get her here because we have an EMERGENCY."
"Well.... do you have a drivers license at least?"
"NO, I LEFT MY WALLET SOMEWHERE--SHE NEEDS MEDICAL CARE."
"You really shouldn't drive without your Drivers License, you know"
"EMERGENCY."
"There's no need to get loud, sir."
"Look--Do I have permission to enter the gate or not?"
*Dubious glances exchanged between the two frustrating gate guards, and then finally a relenting sigh*
Seriously?!! I know they were just doing their jobs, but still... Seriously?!
That little interlude aside (and I guess it's a darn good thign we WEREN'T headed to Seattle with a wallet MIA, really), we got to L&D and they hooked me up to a monitor. Baby hadn't been moving. I kept waiting for a reassuring kick or something as I waited for our friend to get to the house, and during the ride, and as I settled into the bed at the Naval Hospital. I felt pretty sure that she was ok , but I had felt hardly any movement since my butt hit the floor, and that wasn't entirely reassuring.
They put the belts on my belly, and there was her heartbeat. And that was good.
And then we watched the monitor. The nurse came in and watched with us. And she explained that she hoped that her facial expressions and demeanor didn't make me feel unwanted, but they REALLY, REALLY, REALLY did not want me going into labor on their watch, because they REALLY, REALLY, REALLY weren't comfortable having a woman with my particular oddity give birth with their limited capabilities should things go wrong. And again I couldn't believe that I'd almost given birth at this hospital with no questions asked by anyone.
She was very nice despite her caveat about where this baby would ultimately be born. She chatted with us casually about her kids and ours and the shared camaraderie of being female and putting up with the discomforts and of pregnancy, but it was also pretty clear that she wasn't taking any chances with us.
Baby looked great. Heartbeat strong, and now she was trying to kick off the monitor. Also, she got hiccups.
I wasn't showing any signs of placental abruption, which I learned was the big concern with a fall. Even one not involving a belly. But I was having contractions. More than I expected to in only a few hours. I didn't start to feel them until I started tuning into the monitor and then my brain recognized the sensation and suddenly I did feel them. The nurse seemed to want to monitor that a bit more.
So we waited another hour. We watched The Princess Bride which was sitting on the T.V. I tried not to be hyper aware of every baby movement and every contraction by reciting the movie along with the characters since I essentially have it memorized. Somehow, though, just sitting in that uncomfortable bed, strapped to this contraption, wondering.... and wondering.... made me feel everything a little more strongly than normal. And I got progressively more uncomfortable, and increasingly aware of my contractions, and more and more nervous.
Eventually, after checking my cervix, they decided they could send me home. I wasn't going to get so serious about labor that night that I couldn't get myself to UW, but that only made me more nervous because... My doctor was out of town tomorrow, and there was this huge nationally syndicated Football Game happening and all was going to be messed up for hours and what if I went into labor and couldn't deliver with my doctor and someone else who wasn't as amazing took me and things all went wrong? Or what if I went into labor and we got stuck in traffic and the worst happened and we were stranded? Or what if...
I didn't call UW with an update because I desperately did not want to face the possibility of them saying, "Well.... since we have this game tomorrow, maybe you should come in if you're having contractions."
I'm tender today. My belly is tender. I don't know if it's all in my head, or if it's maybe because I twisted to protect myself so quickly when I fell, or for some other reason altogether. I'm walking gingerly everywhere I go. And I'm scared. I'm afraid to sit down wrong, or step wrong. I don't like realizing that I'm having a contraction, whereas normally I'd be glad that my body was doing SOMETHING at least. I'm afraid of lurking dollhouse furniture, and carrying laundry baskets.
Because last night I realized that I'm really just so far away from where my care is. And my case IS unique. And in an emergency, there are going to be some logistics involved which will slow us down. And that reality is scary.
I'm trying so hard not to be rattled by it. I'm trying to take it in a stride. I'm trying to hang onto peace. Lots of people fall when they are pregnant and probably some of them don't even call Labor and Delivery and maybe I shouldn't have either because maybe I wouldn't be so freaked out. But....
I was undone by a piece of doll-house furniture. A piece of doll house furniture and a football game and a two hour drive and the reality that my situation is unique and while everything is really most likely going to be just fine there are extra variables at work. I realized in a new way that even though everything was ok yesterday, that I feel very, very vulnerable. Now I'm just really ready to have the uniqueness of this delivery done and over with so I can focus on my baby for a little bit, before I get scared again.
My friend, Pam, got me out of the house today. We got our hair cut. Nothing perks me up like a hair cut. I'm feeling better by increments, and by tomorrow morning I'll be back to making jokes, and cycling through mania and gooeyness and regular old nerves again. Besides, tomorrow there won't be a football game and if I need to get to Seattle's L&D unit it'll just be the normal pain in the rear 2 hour drive. A regular night of sleep without coming home at midnight will do me good too. I'm ok, and I AM sure that all is going to go well, and we're going to meet this little girl in all her sweet chunky-cheeked glory next week with little fanfare except for the kind that all newborn babies deserve.
How about this though: Until then--keep the dollhouse furniture away from me.
My first thought was, "Ow. And Oof. And Oh." My second thought was, "Dang it, I have to call and what are they going to tell me to do?" And my third thought was, "There's a football game tomorrow at UW.... My doctor will be out of town.... This cannot go awry."
UW's Labor and Delivery predictably suggested that though I hadn't fallen on my belly and though as of yet I wasn't contracting or bleeding, that I should come in and be monitored. Which really wasn't a good thing because after all they're 2 hours away and Andrew was on watch. And how in the heck was this all going to work?
All of which I said to the very nice L&D nurse and she acquiesced to the possibility of my going in to our own Labor and Delivery on base for monitoring with the plan to head south to Seattle if anything looked peculiar. So that's what I determined to do. Then I just had to call and coordinate that with our L&D, find someone to take the kiddos, and call my husband on watch and get there. Which.... all really wasn't that easy.
After a couple of phone calls, I found a friend from church to come be with the girls who were all ready for bed (but had, with almost no prompting from me, also gotten ready for the contingency of coming with Mommy by putting on pantsy pajamas, and shoes and socks and packing their own quiet bag. I was so blown away by their responsibility and concern for Mommy last night). I called Andrew and he made it home in such a short time that I don't want to think about how fast he must have been going. And with everything in place we went to the Labor and Delivery on base.
When we got to base, Andy realized he didn't have his military ID OR his drivers license. So we showed the guard mine and tried to explain. Except they didn't want to let us explain. Finally Andy said, "PLEASE LISTEN. She's 38 weeks pregnant and we have an emergency. We need to get to Labor and Delivery NOW. I left my wallet somewhere in the hurry to get her here because we have an EMERGENCY."
"Well.... do you have a drivers license at least?"
"NO, I LEFT MY WALLET SOMEWHERE--SHE NEEDS MEDICAL CARE."
"You really shouldn't drive without your Drivers License, you know"
"EMERGENCY."
"There's no need to get loud, sir."
"Look--Do I have permission to enter the gate or not?"
*Dubious glances exchanged between the two frustrating gate guards, and then finally a relenting sigh*
Seriously?!! I know they were just doing their jobs, but still... Seriously?!
That little interlude aside (and I guess it's a darn good thign we WEREN'T headed to Seattle with a wallet MIA, really), we got to L&D and they hooked me up to a monitor. Baby hadn't been moving. I kept waiting for a reassuring kick or something as I waited for our friend to get to the house, and during the ride, and as I settled into the bed at the Naval Hospital. I felt pretty sure that she was ok , but I had felt hardly any movement since my butt hit the floor, and that wasn't entirely reassuring.
They put the belts on my belly, and there was her heartbeat. And that was good.
And then we watched the monitor. The nurse came in and watched with us. And she explained that she hoped that her facial expressions and demeanor didn't make me feel unwanted, but they REALLY, REALLY, REALLY did not want me going into labor on their watch, because they REALLY, REALLY, REALLY weren't comfortable having a woman with my particular oddity give birth with their limited capabilities should things go wrong. And again I couldn't believe that I'd almost given birth at this hospital with no questions asked by anyone.
She was very nice despite her caveat about where this baby would ultimately be born. She chatted with us casually about her kids and ours and the shared camaraderie of being female and putting up with the discomforts and of pregnancy, but it was also pretty clear that she wasn't taking any chances with us.
Baby looked great. Heartbeat strong, and now she was trying to kick off the monitor. Also, she got hiccups.
I wasn't showing any signs of placental abruption, which I learned was the big concern with a fall. Even one not involving a belly. But I was having contractions. More than I expected to in only a few hours. I didn't start to feel them until I started tuning into the monitor and then my brain recognized the sensation and suddenly I did feel them. The nurse seemed to want to monitor that a bit more.
So we waited another hour. We watched The Princess Bride which was sitting on the T.V. I tried not to be hyper aware of every baby movement and every contraction by reciting the movie along with the characters since I essentially have it memorized. Somehow, though, just sitting in that uncomfortable bed, strapped to this contraption, wondering.... and wondering.... made me feel everything a little more strongly than normal. And I got progressively more uncomfortable, and increasingly aware of my contractions, and more and more nervous.
Eventually, after checking my cervix, they decided they could send me home. I wasn't going to get so serious about labor that night that I couldn't get myself to UW, but that only made me more nervous because... My doctor was out of town tomorrow, and there was this huge nationally syndicated Football Game happening and all was going to be messed up for hours and what if I went into labor and couldn't deliver with my doctor and someone else who wasn't as amazing took me and things all went wrong? Or what if I went into labor and we got stuck in traffic and the worst happened and we were stranded? Or what if...
I didn't call UW with an update because I desperately did not want to face the possibility of them saying, "Well.... since we have this game tomorrow, maybe you should come in if you're having contractions."
I'm tender today. My belly is tender. I don't know if it's all in my head, or if it's maybe because I twisted to protect myself so quickly when I fell, or for some other reason altogether. I'm walking gingerly everywhere I go. And I'm scared. I'm afraid to sit down wrong, or step wrong. I don't like realizing that I'm having a contraction, whereas normally I'd be glad that my body was doing SOMETHING at least. I'm afraid of lurking dollhouse furniture, and carrying laundry baskets.
Because last night I realized that I'm really just so far away from where my care is. And my case IS unique. And in an emergency, there are going to be some logistics involved which will slow us down. And that reality is scary.
I'm trying so hard not to be rattled by it. I'm trying to take it in a stride. I'm trying to hang onto peace. Lots of people fall when they are pregnant and probably some of them don't even call Labor and Delivery and maybe I shouldn't have either because maybe I wouldn't be so freaked out. But....
I was undone by a piece of doll-house furniture. A piece of doll house furniture and a football game and a two hour drive and the reality that my situation is unique and while everything is really most likely going to be just fine there are extra variables at work. I realized in a new way that even though everything was ok yesterday, that I feel very, very vulnerable. Now I'm just really ready to have the uniqueness of this delivery done and over with so I can focus on my baby for a little bit, before I get scared again.
My friend, Pam, got me out of the house today. We got our hair cut. Nothing perks me up like a hair cut. I'm feeling better by increments, and by tomorrow morning I'll be back to making jokes, and cycling through mania and gooeyness and regular old nerves again. Besides, tomorrow there won't be a football game and if I need to get to Seattle's L&D unit it'll just be the normal pain in the rear 2 hour drive. A regular night of sleep without coming home at midnight will do me good too. I'm ok, and I AM sure that all is going to go well, and we're going to meet this little girl in all her sweet chunky-cheeked glory next week with little fanfare except for the kind that all newborn babies deserve.
How about this though: Until then--keep the dollhouse furniture away from me.
Wednesday, November 17, 2010
Conversations snatches at the Roseberry's House Lately
"Honey.... My feet are swollen and my back hurts and I'm tired, and my belly is huge, and I have a tumor, and I just feel SOOOO pregnant.... Could you bring me a glass of water?" (At least in a few days he'll only have the tumor part to contend with, right?)
"Holy Cow. We're going to have a baby next week."
"I'm nesting... Can we get these discs of my MRI and ultrasounds burned so I can send stuff to NIH." (I've never nested like that before!)
"Holy Cow. We're going to have a baby next week."
Andrew: "Honey... Are you ok?"
Me with flapping arms: "NO!"
Andrew: "What's Wrong?"
Me with flapping arms: "Oh... I dunno... I'm having a baby next week and I have a lot to get done and we're going to Seattle to have it and the doctor doesn't think my body will do well with the induction the first time and I'm terrified and I have a tumor that's being removed on the other side of the country sometime after the baby gets here.... DON'T I HAVE A RIGHT TO FREAK OUT, DANG IT?"
Andrew completely in control: "Of course, honey."
"Holy Cow. We're going to have THREE KIDS NEXT WEEK?!"
"The doctor says this baby is going to be huge. I mean huge. A huge baby. I'm having a huge baby."
"I'm having a BABY next week?! Why didn't anyone tell me I was gonna have a baby?! I don't think I know what to do with a baby anymore. We're toast!"
"I can't wait to meet her and find out what kind of a personality she's going to have and see her squishy cheeks! Oh... She's gonna be huge."
"We're having a BABY next week! Awww... I'm so excited!"
Yes.... I am alternately manic with preparations, amazingly calm, and totally freaked out this week. The doctor prepared me at our last OB visit that the induction process might take a couple of tries and that I should prepare myself to see a lot of UW next week. I'm trying to gear up mentally for that. In the end I know it'll be worth it to meet this little girl. I try to keep thoughts about the reasons for being in Seattle at bay. I don't even want to entertain the idea of "something tumor-related happening." I'm just planning on them not happening.
In my less together moments I find that I get overwhelmed by the thought that all the things that we've only been planning for up to now will start becoming reality this week, and while the reality of baby girl will surely be wonderful and miraculous, the realities that will come after and in contingency with a very small baby girl are a little daunting.
We keep plugging along though. We ARE excited and delighted about next week (as well as overwhelmed and terrified as you always are when you prepare to bring home a new wee one). The most important thing right now is getting this newest little Sweetheart girl here safely, and that is what we shall do...
I just hope she cooperates the first time around and we can bring her home to be this Thanksgiving's Pumpkin Pie. :)
"Holy Cow. We're going to have a baby next week."
"I'm nesting... Can we get these discs of my MRI and ultrasounds burned so I can send stuff to NIH." (I've never nested like that before!)
"Holy Cow. We're going to have a baby next week."
Andrew: "Honey... Are you ok?"
Me with flapping arms: "NO!"
Andrew: "What's Wrong?"
Me with flapping arms: "Oh... I dunno... I'm having a baby next week and I have a lot to get done and we're going to Seattle to have it and the doctor doesn't think my body will do well with the induction the first time and I'm terrified and I have a tumor that's being removed on the other side of the country sometime after the baby gets here.... DON'T I HAVE A RIGHT TO FREAK OUT, DANG IT?"
Andrew completely in control: "Of course, honey."
"Holy Cow. We're going to have THREE KIDS NEXT WEEK?!"
"The doctor says this baby is going to be huge. I mean huge. A huge baby. I'm having a huge baby."
"I'm having a BABY next week?! Why didn't anyone tell me I was gonna have a baby?! I don't think I know what to do with a baby anymore. We're toast!"
"I can't wait to meet her and find out what kind of a personality she's going to have and see her squishy cheeks! Oh... She's gonna be huge."
"We're having a BABY next week! Awww... I'm so excited!"
Yes.... I am alternately manic with preparations, amazingly calm, and totally freaked out this week. The doctor prepared me at our last OB visit that the induction process might take a couple of tries and that I should prepare myself to see a lot of UW next week. I'm trying to gear up mentally for that. In the end I know it'll be worth it to meet this little girl. I try to keep thoughts about the reasons for being in Seattle at bay. I don't even want to entertain the idea of "something tumor-related happening." I'm just planning on them not happening.
In my less together moments I find that I get overwhelmed by the thought that all the things that we've only been planning for up to now will start becoming reality this week, and while the reality of baby girl will surely be wonderful and miraculous, the realities that will come after and in contingency with a very small baby girl are a little daunting.
We keep plugging along though. We ARE excited and delighted about next week (as well as overwhelmed and terrified as you always are when you prepare to bring home a new wee one). The most important thing right now is getting this newest little Sweetheart girl here safely, and that is what we shall do...
I just hope she cooperates the first time around and we can bring her home to be this Thanksgiving's Pumpkin Pie. :)
Sunday, October 24, 2010
In Which Mama Bear Gets It and My Wonderful New Doctor Blows My Socks Off
Well... since that last post the whole 'where will the baby come out?' discussion got a little more interesting. I started to wrap my mind around the hospital my (original) doctor had mentioned. The one that seemed so very far away for a delivery at 1 hour and 45 minutes away from us. I did what I do and I Googled it and I saw the birthing suites and read about the ICU and NICU (which I really shouldn't need, but is still the mark of a higher-level hospital) and I thought, "Ok. I can do this." This could be ok. And I started to settle my mind into it.
I went swimming with Carolyn that Friday, did some laps myself, and was feeling pretty good when I walked through the door to see a message blinking on my answering machine.
It was.... The University of Washington. In Seattle. The SUPER hospital. You might remember that this is the place where we went to visit Dr. Crazy Hair and the Grey's Anatomyesque Intern and Resident. And when THEY call YOU you know there's some business going down.
This phone call indicated that I was to call back regarding an appointment that had been scheduled for the following Monday... The person on the answering machine indicated that she and I had already discussed this appointment, but I had never talked to the woman before... On top of that, I certainly wasn't expecting my care to be at UW. This was most certainly another curve ball.
I called back and got the pertinent information. I found out my appointment was scheduled with a doctor who follows High Risk pregnancies (Translation for the Grey's fans: They sent me to Addison Montgomery) and that I really had to make this appointment because (as if I hadn't noticed yet) we were in the eleventh hour here.
And at the word 'High Risk Pregnancy' coming from the lips of a person at UW, my Mama Bear heart skipped a beat. Of course it wasn't the first time I thought about the words... It's been on my chart for some time. It's the reason I met with the grumpy anesthesiologist at the Naval Hospital. But remember in the span of a week and a half I had gone from everyone I talked to saying, "Eh... No big deal on this delivering of the baby thing," to.... an ASAP referral to the REAL super hospital in Seattle's version of Addison Montgomery.
Let's face it, I've watched enough of Grey's Anatomy and Private Practice to know what kind of cases those doctors take on.
So.... I got a little bit scared. At the same time, the sinus infection I'd mentioned in the previous post got a lot worse... and my ear started to hurt... and all of my attempts to stay in control of my physical and emotional feelings were just plain shot. Being sick plus processing all of the new curve balls that now had to do with my pregnancy and therefore MY BABY just.... wasn't going well.
And lo.... I was a total basket case.
Monday came and Andy and I made the trek down to Seattle. I was a nervous wreck. I was a bundle of questions about C-sections and Inductions and 2+ hour drives to deliver a baby and worries about whether or not I would feel comfortable with this doctor.
Finally, we met her.
And I fell in love. Commence the newest Doctor Crush. Can she be my new best friend?
Her staff was wonderful. Her nurse hung out with us for a good 15 minutes quizzing me about Tomas and telling us how things worked when you hatched a kid at the UW. She was delightful. And then the doctor walked in and answered all of my questions before I could even ask them.
She said at one point, "I'm going to throw you a curve ball." I almost fainted then and there because I didn't think I could handle any more curve balls especially the kind that might come from the UW equivalent of Addison Montgomery. Andrew started reaching for the tissues on the counter and I warned her that me and Curve Balls were not friends right now.
Then she said, "I know everyone has probably been talking about C-sections with you... But I'm not sure that's the right way to go in your case. I'm not sure that would actually be LESS stressful for you and baby in the long run."
And that's when I got really Gooey-eyed about My Wonderful New Doctor.
She took us through a potential plan that would involve a planned induction (with a delivery 2+ hours away from home, there's just really no way to get around that at this point), but would not necessarily have to involve a C-section. (It will probably, however, involve a *really* good epidural and a Season or two of Bones). Now don't get me wrong, I'm NOT down on C-sections. But I would like to avoid one if at all possible because I've got a lot coming at me in my recovery period and I already have at least one and possibly two surgeries looming post baby arrival (thanks to good ole Hermione) and besides I just plain don't know what to expect within the realm of C-sectionness. I've had two non-medicated births that came about 'the more traditional way,' and I have a lot of anxiety about the C-section possibility and how I would handle it (mostly in regards to the recovery period).
This plan is not set in stone. We'll find out more about whether or not it's a possibility at our next appointment on Wednesday when we'll again see My Wonderful New Doctor as well as an anesthesiologist. The anesthesiologists hold the magic fairy dust to keep all ok in ANY strange event that Tomas might cause and they are key players to this delivery. They have to be on board with My Wonderful New Doctor too.
But just knowing that she was open to other possibilities was so comforting.
I left feeling GOOD about about going to UW for baby's arrival and feeling WONDERFUL about My Wonderful New Doctor.
Incidentally, I got a phone call from the referral powers that be at the Naval Hospital later on in the week. I had called my doctor, trying very hard not to cry, after making the initial contact with the folks at UW. I asked him why I was being sent to a Super Hospital instead of the "Medium level hospital that is closer with an ICU and everything he said I really needed." He said he'd ask the folks in referrals.
They called to explain that they'd been trying to get me in to said hospital (to which I nearly burst out with, NO! DON'T! in light of My Wonderful New Doctor) and.... They wouldn't take me. I'm too weird. I make them too nervous. They consider my oddities to be too big of a risk for them.
Then I thought--the meeting with the grumpy anesthesiologist was not so fun... And the feeling that no one out here had my back until the fabulous folks at NIH stepped up for me was awful... And switching at the eleventh hour from my doctor who has been so wonderful through this whole process is really a bummer.... And the prospect of giving birth 2 hours away is inconvenient at best and anxiety producing at worst....
BUT how scary is it that unless those questions had been asked, that I could have given birth at our little Naval Hospital when the folks down the road, which are considered to be more than a few steps above our little hospital, consider me to be too high of a risk and would only refer me up to the super docs?
At that point the Mama Bear who had previously only been scared out of her mind at the words 'High Risk' in conjunction with this pregnancy suddenly became just really grateful that I was going to the very, very best place around for world class care for this little cub and me.
There's a 99% chance that we don't need to be at a Super Hospital and that all the extra precautions and resources that will be available to us won't be needed in the least. But if that 1% fluke happens and I end up being *really* special in a not so great way, I'm exactly where I need to be.
So on Wednesday we should be coming home with a 'plan' not that babies always follow anybody's plan, Super Doc or not. We should know when the hatching of this sweet little one will occur too (again see previous statement). I've kicked the sinus infection and gotten drugs for the ear infection and the world is really looking brighter.
Mama Bear has settled in, Tomas can wait a while longer, and I'm good.
At least until the next curve ball comes flying.
I went swimming with Carolyn that Friday, did some laps myself, and was feeling pretty good when I walked through the door to see a message blinking on my answering machine.
It was.... The University of Washington. In Seattle. The SUPER hospital. You might remember that this is the place where we went to visit Dr. Crazy Hair and the Grey's Anatomyesque Intern and Resident. And when THEY call YOU you know there's some business going down.
This phone call indicated that I was to call back regarding an appointment that had been scheduled for the following Monday... The person on the answering machine indicated that she and I had already discussed this appointment, but I had never talked to the woman before... On top of that, I certainly wasn't expecting my care to be at UW. This was most certainly another curve ball.
I called back and got the pertinent information. I found out my appointment was scheduled with a doctor who follows High Risk pregnancies (Translation for the Grey's fans: They sent me to Addison Montgomery) and that I really had to make this appointment because (as if I hadn't noticed yet) we were in the eleventh hour here.
And at the word 'High Risk Pregnancy' coming from the lips of a person at UW, my Mama Bear heart skipped a beat. Of course it wasn't the first time I thought about the words... It's been on my chart for some time. It's the reason I met with the grumpy anesthesiologist at the Naval Hospital. But remember in the span of a week and a half I had gone from everyone I talked to saying, "Eh... No big deal on this delivering of the baby thing," to.... an ASAP referral to the REAL super hospital in Seattle's version of Addison Montgomery.
Let's face it, I've watched enough of Grey's Anatomy and Private Practice to know what kind of cases those doctors take on.
So.... I got a little bit scared. At the same time, the sinus infection I'd mentioned in the previous post got a lot worse... and my ear started to hurt... and all of my attempts to stay in control of my physical and emotional feelings were just plain shot. Being sick plus processing all of the new curve balls that now had to do with my pregnancy and therefore MY BABY just.... wasn't going well.
And lo.... I was a total basket case.
Monday came and Andy and I made the trek down to Seattle. I was a nervous wreck. I was a bundle of questions about C-sections and Inductions and 2+ hour drives to deliver a baby and worries about whether or not I would feel comfortable with this doctor.
Finally, we met her.
And I fell in love. Commence the newest Doctor Crush. Can she be my new best friend?
Her staff was wonderful. Her nurse hung out with us for a good 15 minutes quizzing me about Tomas and telling us how things worked when you hatched a kid at the UW. She was delightful. And then the doctor walked in and answered all of my questions before I could even ask them.
She said at one point, "I'm going to throw you a curve ball." I almost fainted then and there because I didn't think I could handle any more curve balls especially the kind that might come from the UW equivalent of Addison Montgomery. Andrew started reaching for the tissues on the counter and I warned her that me and Curve Balls were not friends right now.
Then she said, "I know everyone has probably been talking about C-sections with you... But I'm not sure that's the right way to go in your case. I'm not sure that would actually be LESS stressful for you and baby in the long run."
And that's when I got really Gooey-eyed about My Wonderful New Doctor.
She took us through a potential plan that would involve a planned induction (with a delivery 2+ hours away from home, there's just really no way to get around that at this point), but would not necessarily have to involve a C-section. (It will probably, however, involve a *really* good epidural and a Season or two of Bones). Now don't get me wrong, I'm NOT down on C-sections. But I would like to avoid one if at all possible because I've got a lot coming at me in my recovery period and I already have at least one and possibly two surgeries looming post baby arrival (thanks to good ole Hermione) and besides I just plain don't know what to expect within the realm of C-sectionness. I've had two non-medicated births that came about 'the more traditional way,' and I have a lot of anxiety about the C-section possibility and how I would handle it (mostly in regards to the recovery period).
This plan is not set in stone. We'll find out more about whether or not it's a possibility at our next appointment on Wednesday when we'll again see My Wonderful New Doctor as well as an anesthesiologist. The anesthesiologists hold the magic fairy dust to keep all ok in ANY strange event that Tomas might cause and they are key players to this delivery. They have to be on board with My Wonderful New Doctor too.
But just knowing that she was open to other possibilities was so comforting.
I left feeling GOOD about about going to UW for baby's arrival and feeling WONDERFUL about My Wonderful New Doctor.
Incidentally, I got a phone call from the referral powers that be at the Naval Hospital later on in the week. I had called my doctor, trying very hard not to cry, after making the initial contact with the folks at UW. I asked him why I was being sent to a Super Hospital instead of the "Medium level hospital that is closer with an ICU and everything he said I really needed." He said he'd ask the folks in referrals.
They called to explain that they'd been trying to get me in to said hospital (to which I nearly burst out with, NO! DON'T! in light of My Wonderful New Doctor) and.... They wouldn't take me. I'm too weird. I make them too nervous. They consider my oddities to be too big of a risk for them.
Then I thought--the meeting with the grumpy anesthesiologist was not so fun... And the feeling that no one out here had my back until the fabulous folks at NIH stepped up for me was awful... And switching at the eleventh hour from my doctor who has been so wonderful through this whole process is really a bummer.... And the prospect of giving birth 2 hours away is inconvenient at best and anxiety producing at worst....
BUT how scary is it that unless those questions had been asked, that I could have given birth at our little Naval Hospital when the folks down the road, which are considered to be more than a few steps above our little hospital, consider me to be too high of a risk and would only refer me up to the super docs?
At that point the Mama Bear who had previously only been scared out of her mind at the words 'High Risk' in conjunction with this pregnancy suddenly became just really grateful that I was going to the very, very best place around for world class care for this little cub and me.
There's a 99% chance that we don't need to be at a Super Hospital and that all the extra precautions and resources that will be available to us won't be needed in the least. But if that 1% fluke happens and I end up being *really* special in a not so great way, I'm exactly where I need to be.
So on Wednesday we should be coming home with a 'plan' not that babies always follow anybody's plan, Super Doc or not. We should know when the hatching of this sweet little one will occur too (again see previous statement). I've kicked the sinus infection and gotten drugs for the ear infection and the world is really looking brighter.
Mama Bear has settled in, Tomas can wait a while longer, and I'm good.
At least until the next curve ball comes flying.
Wednesday, October 13, 2010
Ok. Fine
--Referral in for new OB. Likely hospital I deliver at will be 1 hour and 45 minutes away.
--Talk of scheduled induction because of distance from hospital.
--Talk of scheduled C-section because of extraordinarily small chance of tumor secreting hormones and a hypertensive crisis happening.
(Neither are options with which I'm particularly thrilled. If this is what is needed to get baby here safely though, we'll go with it. I'm just tired of Tomas getting to call all the shots and change all the game plans. I KNOW that if Mom and baby come through labor and delivery safely that's all that matters. But I'm tired of having my expectations thwarted and my plans tweaked and retweaked and tweaked again because of a thing in my neck that I didn't invite.)
--Not so comforting, "We're expecting everything to be straight-forward with your delivery, but just in case we need you at a hospital equipped with an ICU," discussion. Ok. Fine.
--Cold which seems to want to develop into sinus infection or bronchitis, keeps me from sleeping well at night. Makes me feel like crap during the day too. At least it's not as bad as it was over the weekend.
--Rough couple of Mommy days with kiddos pushing boundaries and practicing their howling skills (and not the howling skills needed for Halloween).
Ok. Fine. None of it is a big deal. None of it is huge.... But all of it is wearying.
I'm feeling a bit discouraged to tell the truth.
This too shall pass and I'll put on my big girl panties and deal with all of it. Because... well: what other choice do I have?
But right now, in the thick of it, I'm tired, and I don't feel well, and the little things of life seem out of control, and the big things of life seem even more out of control. And I'm just feeling a little discouraged about it all.
"O God, Thy Sea is so big and my boat is so small," so goes the prayer.
And I'll add what my good friend Piglet says, "It's a little anxious to be a very small animal entirely surrounded by water."
--Talk of scheduled induction because of distance from hospital.
--Talk of scheduled C-section because of extraordinarily small chance of tumor secreting hormones and a hypertensive crisis happening.
(Neither are options with which I'm particularly thrilled. If this is what is needed to get baby here safely though, we'll go with it. I'm just tired of Tomas getting to call all the shots and change all the game plans. I KNOW that if Mom and baby come through labor and delivery safely that's all that matters. But I'm tired of having my expectations thwarted and my plans tweaked and retweaked and tweaked again because of a thing in my neck that I didn't invite.)
--Not so comforting, "We're expecting everything to be straight-forward with your delivery, but just in case we need you at a hospital equipped with an ICU," discussion. Ok. Fine.
--Cold which seems to want to develop into sinus infection or bronchitis, keeps me from sleeping well at night. Makes me feel like crap during the day too. At least it's not as bad as it was over the weekend.
--Rough couple of Mommy days with kiddos pushing boundaries and practicing their howling skills (and not the howling skills needed for Halloween).
Ok. Fine. None of it is a big deal. None of it is huge.... But all of it is wearying.
I'm feeling a bit discouraged to tell the truth.
This too shall pass and I'll put on my big girl panties and deal with all of it. Because... well: what other choice do I have?
But right now, in the thick of it, I'm tired, and I don't feel well, and the little things of life seem out of control, and the big things of life seem even more out of control. And I'm just feeling a little discouraged about it all.
"O God, Thy Sea is so big and my boat is so small," so goes the prayer.
And I'll add what my good friend Piglet says, "It's a little anxious to be a very small animal entirely surrounded by water."
Thursday, October 7, 2010
A roller-coastery week and why I KNOW we made the right choice
It's been quite a week.
I have a cold or a virus of some sort for one thing. I haven't been sleeping well for another. That makes the head space of Val a difficult thing to navigate.
We had the fantastic news (mentioned below in an earlier post) from NIH this week that encouraged me immensely. After that I didn't expect to be thrown for any sort of loop at my OB appointment on Wednesday. After all, I had a game plan and I was on top of everything.
But there was this other bump that I'd been stressing over. The one on my belly. I presume it is this bump and it's odd location that makes people exclaim, "Oh My, You're just HUGE!!!!" upon seeing me these days--which believe me is a great ego booster for a girl, especially when those same people try to convince me I'm having twins or that my due date is off by two months.
And that bump, as I mentioned yesterday, it turns out is most likely a hernia. And my doctor thinks that most likely that hernia will need to be dealt with surgically post baby arrival. And that news... That news did not please me any.
I looked at Andy after sobbing hysterically in the Goobermobile for a few minutes after the appointment and said, "I can take the news of a Carotid Paraganglioma and go off to work. Here I am crying over a hernia?"
But really, first of all, hernias sound like something that only hairy, large men with names like Bif and large biceps should get--at least in my head. And second of all...
Um... Have you been paying attention to what's going on ALREADY after this sweet little girl makes her appearance in our lives? Things will be quite full enough thank you and I'm not really in the mood to 'squeeze in just one more tiny surgery' no matter how 'routine' it may be.
So there was that.
And then, my doctor mentioned that the anesthesiologist wanted to see me. I've given birth at this very Naval hospital two other times before this pregnancy and not once has an anesthesiologist wanted to talk to me. In fact, since my labors happen mainly within the 'it doesn't really count as REAL labor according to the intake nurses' window of being dilated to 2 cms for 6-8 (painful, contraction-filled) hours and then going from hearing 'you're never going to have this baby at this rate, woman, deal with it,' from the nurses to 'Holy cow it's time RIGHT NOW!!! Somebody put on the Catcher's Gear!" in the course of a few minutes, I've never even had time for an epidural.
But this time an anesthesiologist consult was requested. So I asked why and I was told that it's because I have a weird thing in my neck and they wanted to talk to me about what that might mean with anesthesia.
I was shuffled around on this particular consultation two days in a row. In the meantime I talked to the amazing people on my team at NIH to find out what my anesthesiologists DID need to know. That boiled down to one thing really: It is really, really, really, really, really extremely unlikely that this Para (or another one that we don't know about) would secrete hormones and spike my BP especially given my catecholamine/metanepherine levels being normal and my blood pressure being a little on the low side even with all the crazy that's happened lately. BUT it's not unheard of. Sometimes the stress of labor triggers an otherwise 'silent' para into action and when that happens a hypertensive crisis could happen. So... There was just that one little thing they needed to know, really.
After being led through a maze to find the anesthesiologist's office at the Naval Hospital today (which was... strangely in the middle of the dental wing???), and after waiting for him for 15 minutes in a hospital that was mostly deserted because of meetings, and after speaking to 3 different people wondering where he was and then waiting on him to come shuffling in, I finally got to sit down and talk to the guy. He was worried about blood flow and about my airway, which are valid concerns for a gentleman of his profession. When I used the word 'paraganglioma' he said, "Do you have documentation of this diagnosis?" And I said, "Um... Yeah." He yelled at me for not having a specialist following my case more closely and I told him that no specialist wanted me until after my baby was born. And then I brought up the issues that my folks at NIH had indicated were most valid to address. He grilled me on my cat/met levels and noted my low and stable blood pressure so far and made a 'what is with this weirdo patient worrying about things that aren't going to happen?' facial expression that I'm coming to know quite well. Then he said "If you ended up having a hypertensive crisis we could give you drugs to make you stable and transport you to another hospital more equipped for those things, but I think you'll be ok delivering here." Translation: In the (admittedly extremely unlikely, but not unheard of) event that the stuff hit the fan... I'd be toast. And this guy didn't really care.
So I came home. And I cried. And I sent an email to NIH.
And NIH called back straight away and said, "You know... You really need to deliver at another hospital," and I blubbered something about how they probably couldn't refer me out because I haven't been SEEN by someone who would recommend it given my diagnosis... And the wonderful nurse who has begun calling me 'honey-bunny' from all of the conversations we've had in a way that doesn't even really annoy me, said, "WHO DO I NEED TO TALK TO?" And I cried. And felt better. Because SOMEONE has my back.
I have really been hating being a rarity lately. I hate that when I talk to a doctor here in this state--even the super-specialists at places like UW--I am thought to be a hypochondriac zebra-chaser. I hate that within about ten minutes of talking to some of the doctors I've encountered that I can tell that they are not clear with the terminology. For instance a "Carotid Body Tumor, (which is actually a misnomer) IS a paraganglioma. And a Paraganglioma IS very similar to a Pheochromacytoma. It's the same thing, but located outside of the adrenal gland. I don't WANT to be the expert. I know very well that I haven't gone to med school. But because of that fact most of them blow off any information that I give them because after all 'they're the ones making the big bucks.' It's enough to make a girl feel completely, and totally alone with a diagnosis that is treatable but serious and has the potential to be very serious not only to me, but possibly to my children also. depending on what we find out about the genetic nature of the disease.
And that is why I am so INCREDIBLY THANKFUL for NIH and for the communication that they have been so free with and for their answering my questions and NOW being willing to talk to whoever needs to be talked to to make sure that until I come to THEM that I am seen by the best people possible.
So what's that mean on the news front?
It means that... Well, I have a hernia too. It means that there is a good possibility that I will not be delivering at this hospital. It means that we have about 8 weeks to figure out where I'm going to give birth and it means that I may be saying goodbye to the only doctor in this part of the country who has taken me seriously and advocated for me and not treated me like a zebra chaser: The Family Practice Doc. who has been following my OB care.
It means there may be a battle for a referral with TriCare, but I have faith that my person at NIH will get the right information to the right people to get me to the right place
But hopefully, ultimately it means that all will be well for the part of this deal that is supposed to be joyous and that is supposed to be about the arrival of the sweet little person growing and kicking and wriggling within me as we speak. If that part of the puzzle can be put in and put at rest, we can focus on that for the next few weeks and get into the joy part of it all before heading to NIH and dealing with the tumor part of it all.
I'm still a coldy, tired, and emotionally frazzled girl. But I AM going to be ok.
I have a cold or a virus of some sort for one thing. I haven't been sleeping well for another. That makes the head space of Val a difficult thing to navigate.
We had the fantastic news (mentioned below in an earlier post) from NIH this week that encouraged me immensely. After that I didn't expect to be thrown for any sort of loop at my OB appointment on Wednesday. After all, I had a game plan and I was on top of everything.
But there was this other bump that I'd been stressing over. The one on my belly. I presume it is this bump and it's odd location that makes people exclaim, "Oh My, You're just HUGE!!!!" upon seeing me these days--which believe me is a great ego booster for a girl, especially when those same people try to convince me I'm having twins or that my due date is off by two months.
And that bump, as I mentioned yesterday, it turns out is most likely a hernia. And my doctor thinks that most likely that hernia will need to be dealt with surgically post baby arrival. And that news... That news did not please me any.
I looked at Andy after sobbing hysterically in the Goobermobile for a few minutes after the appointment and said, "I can take the news of a Carotid Paraganglioma and go off to work. Here I am crying over a hernia?"
But really, first of all, hernias sound like something that only hairy, large men with names like Bif and large biceps should get--at least in my head. And second of all...
Um... Have you been paying attention to what's going on ALREADY after this sweet little girl makes her appearance in our lives? Things will be quite full enough thank you and I'm not really in the mood to 'squeeze in just one more tiny surgery' no matter how 'routine' it may be.
So there was that.
And then, my doctor mentioned that the anesthesiologist wanted to see me. I've given birth at this very Naval hospital two other times before this pregnancy and not once has an anesthesiologist wanted to talk to me. In fact, since my labors happen mainly within the 'it doesn't really count as REAL labor according to the intake nurses' window of being dilated to 2 cms for 6-8 (painful, contraction-filled) hours and then going from hearing 'you're never going to have this baby at this rate, woman, deal with it,' from the nurses to 'Holy cow it's time RIGHT NOW!!! Somebody put on the Catcher's Gear!" in the course of a few minutes, I've never even had time for an epidural.
But this time an anesthesiologist consult was requested. So I asked why and I was told that it's because I have a weird thing in my neck and they wanted to talk to me about what that might mean with anesthesia.
I was shuffled around on this particular consultation two days in a row. In the meantime I talked to the amazing people on my team at NIH to find out what my anesthesiologists DID need to know. That boiled down to one thing really: It is really, really, really, really, really extremely unlikely that this Para (or another one that we don't know about) would secrete hormones and spike my BP especially given my catecholamine/metanepherine levels being normal and my blood pressure being a little on the low side even with all the crazy that's happened lately. BUT it's not unheard of. Sometimes the stress of labor triggers an otherwise 'silent' para into action and when that happens a hypertensive crisis could happen. So... There was just that one little thing they needed to know, really.
After being led through a maze to find the anesthesiologist's office at the Naval Hospital today (which was... strangely in the middle of the dental wing???), and after waiting for him for 15 minutes in a hospital that was mostly deserted because of meetings, and after speaking to 3 different people wondering where he was and then waiting on him to come shuffling in, I finally got to sit down and talk to the guy. He was worried about blood flow and about my airway, which are valid concerns for a gentleman of his profession. When I used the word 'paraganglioma' he said, "Do you have documentation of this diagnosis?" And I said, "Um... Yeah." He yelled at me for not having a specialist following my case more closely and I told him that no specialist wanted me until after my baby was born. And then I brought up the issues that my folks at NIH had indicated were most valid to address. He grilled me on my cat/met levels and noted my low and stable blood pressure so far and made a 'what is with this weirdo patient worrying about things that aren't going to happen?' facial expression that I'm coming to know quite well. Then he said "If you ended up having a hypertensive crisis we could give you drugs to make you stable and transport you to another hospital more equipped for those things, but I think you'll be ok delivering here." Translation: In the (admittedly extremely unlikely, but not unheard of) event that the stuff hit the fan... I'd be toast. And this guy didn't really care.
So I came home. And I cried. And I sent an email to NIH.
And NIH called back straight away and said, "You know... You really need to deliver at another hospital," and I blubbered something about how they probably couldn't refer me out because I haven't been SEEN by someone who would recommend it given my diagnosis... And the wonderful nurse who has begun calling me 'honey-bunny' from all of the conversations we've had in a way that doesn't even really annoy me, said, "WHO DO I NEED TO TALK TO?" And I cried. And felt better. Because SOMEONE has my back.
I have really been hating being a rarity lately. I hate that when I talk to a doctor here in this state--even the super-specialists at places like UW--I am thought to be a hypochondriac zebra-chaser. I hate that within about ten minutes of talking to some of the doctors I've encountered that I can tell that they are not clear with the terminology. For instance a "Carotid Body Tumor, (which is actually a misnomer) IS a paraganglioma. And a Paraganglioma IS very similar to a Pheochromacytoma. It's the same thing, but located outside of the adrenal gland. I don't WANT to be the expert. I know very well that I haven't gone to med school. But because of that fact most of them blow off any information that I give them because after all 'they're the ones making the big bucks.' It's enough to make a girl feel completely, and totally alone with a diagnosis that is treatable but serious and has the potential to be very serious not only to me, but possibly to my children also. depending on what we find out about the genetic nature of the disease.
And that is why I am so INCREDIBLY THANKFUL for NIH and for the communication that they have been so free with and for their answering my questions and NOW being willing to talk to whoever needs to be talked to to make sure that until I come to THEM that I am seen by the best people possible.
So what's that mean on the news front?
It means that... Well, I have a hernia too. It means that there is a good possibility that I will not be delivering at this hospital. It means that we have about 8 weeks to figure out where I'm going to give birth and it means that I may be saying goodbye to the only doctor in this part of the country who has taken me seriously and advocated for me and not treated me like a zebra chaser: The Family Practice Doc. who has been following my OB care.
It means there may be a battle for a referral with TriCare, but I have faith that my person at NIH will get the right information to the right people to get me to the right place
But hopefully, ultimately it means that all will be well for the part of this deal that is supposed to be joyous and that is supposed to be about the arrival of the sweet little person growing and kicking and wriggling within me as we speak. If that part of the puzzle can be put in and put at rest, we can focus on that for the next few weeks and get into the joy part of it all before heading to NIH and dealing with the tumor part of it all.
I'm still a coldy, tired, and emotionally frazzled girl. But I AM going to be ok.
Wednesday, October 6, 2010
Seriously?!
And NOW I have a hernia which will need surgery after baby too.
I'm naming it Hermione.
And I'm so totally done with weird lumps and issues--To WHOM IT MIGHT CONCERN.
I'm naming it Hermione.
And I'm so totally done with weird lumps and issues--To WHOM IT MIGHT CONCERN.
Tuesday, October 5, 2010
Swirling Vortex of Chaos Meet Game Plan
So it's not like we have a lot going on right now or anything.
We're just... Having a baby.
And navigating Carotid Paraganglioma-ville and other 'lumpy issues'... Which includes surgery on the other side of the country when most of our familial support system (who are being SO awesome and traveling to our side of the country to help us) are located in the middle of the country.
And then, you know... there's the *little* detail of Andrew's Shore Duty coming to an end and making the decision to stay Navy.... which means that we're preparing for Sea Duty and awayness a lot.
And well, you know... Babies don't come with game plans.
And Paragangliomas... Well their game plans take a while to develop when you are fighting for information and education and the best treatment possible.
And the Navy.... HA. There's NEVER a game plan with the Navy. At least not one that gets translated to the service members and families in question in a timely manner.
That's not overwhelming or anything. Really. Especially not with crazy pregnancy hormones and the beginning chapters of sleep deprivation (from umpteen trips to the bathroom, and heartburn at 2 am, and the mental dedication it takes just to turn over at night, you understand).
Ok, I've been freaking out just a little bit.
Today NIH called and I again had a really encouraging and empowering conversation.
And I got a glimpse of the game plan with some fantastic news: It's not going to be TWO trips to NIH. It will only be one. Scans the first week, surgery the second (maybe a little later, but still pretty quickly), and then we come home until follow-up time.
That sounds so much easier than two trips and coordinating two times away from my sweet big girls. That makes things feel like they're falling into place. And like this game plan might just be workable.
Tomas--get ready, your eviction notice is likely coming in January. We'll celebrate the beginning of my 3rd decade by getting rid of you and finding out if we need to be on the lookout for any of your relatives down the line.
A girl with a plan can look at the swirling vortex of chaos that has been frustrating me as of late with more confidence. Heck. I think I'll even level it with the famous Val stare-down. Not even Tomas is immune to that.
We're just... Having a baby.
And navigating Carotid Paraganglioma-ville and other 'lumpy issues'... Which includes surgery on the other side of the country when most of our familial support system (who are being SO awesome and traveling to our side of the country to help us) are located in the middle of the country.
And then, you know... there's the *little* detail of Andrew's Shore Duty coming to an end and making the decision to stay Navy.... which means that we're preparing for Sea Duty and awayness a lot.
And well, you know... Babies don't come with game plans.
And Paragangliomas... Well their game plans take a while to develop when you are fighting for information and education and the best treatment possible.
And the Navy.... HA. There's NEVER a game plan with the Navy. At least not one that gets translated to the service members and families in question in a timely manner.
That's not overwhelming or anything. Really. Especially not with crazy pregnancy hormones and the beginning chapters of sleep deprivation (from umpteen trips to the bathroom, and heartburn at 2 am, and the mental dedication it takes just to turn over at night, you understand).
Ok, I've been freaking out just a little bit.
Today NIH called and I again had a really encouraging and empowering conversation.
And I got a glimpse of the game plan with some fantastic news: It's not going to be TWO trips to NIH. It will only be one. Scans the first week, surgery the second (maybe a little later, but still pretty quickly), and then we come home until follow-up time.
That sounds so much easier than two trips and coordinating two times away from my sweet big girls. That makes things feel like they're falling into place. And like this game plan might just be workable.
Tomas--get ready, your eviction notice is likely coming in January. We'll celebrate the beginning of my 3rd decade by getting rid of you and finding out if we need to be on the lookout for any of your relatives down the line.
A girl with a plan can look at the swirling vortex of chaos that has been frustrating me as of late with more confidence. Heck. I think I'll even level it with the famous Val stare-down. Not even Tomas is immune to that.
Saturday, September 18, 2010
Oh Yeah...
This post is in a couple of places. For the record.
When I went to see my doctor 7 months after Baboo came along to see if what I was feeling might be PPD, I kind of spilled my guts.
So much had happened in such a short time in the months and years previous to that day I felt like I didn’t have any sense of emotional equilibrium to compare with to I was feeling in that moment.
He assured me I did indeed have Postpartum Depression and I wasn’t particularly enthused about that. So I cried a little bit and freaked out a little bit. And tried to figure out a way that maybe it wasn’t PPD.
Then he said, “You’ve been through a lot. There’s no question on that. There have been a lot of ups and downs that you have gotten through in a very short time. And in the not too distant future, you are going to look back on this and say, ‘Hey. I got through that too.’”
I’ve said that very thing almost every time I’ve talked to another Mom going through PPD.
Since I got this crazy diagnosis I’ve been surviving. And sometimes I’ve felt good and ok. And sometimes I’ve felt scared stupid. Sometimes I’ve just felt pregnant.
It wasn’t until tonight that I thought about what my doctor said in the context of what’s going on right now. “In the not too distant future I’m going to look back and say, Hey. I got through that too.”
When we walk through trials and we come out on the other side, for a little bit we look at life from a new perspective. We feel empowered and like we really can conquer anything. I got through that horrific year when I lost my Mom, and my husband deployed, and my infant and I went to more funerals than anyone should in a single year and we lived in two different states. I got through PPD. I even remember how empowered I felt after I gave birth to my girls--especially with Carolyn. I couldn’t believe my body had made this perfect little person and sustained her life and pushed her out and I felt like I could truly do anything and face anything.
Eventually though that feeling fades and the humdrum stuff starts looking daunting again and it’s a struggle to get through a day with a five-year old and a three-year old who are both displaying quite an attitude while your feet are swelling and your gait is starting to resemble that of a penguin (not that that has happened lately or anything). And then the big stuff, that you thought in the face of the other stuff you’ve gone through wouldn’t look so intimidating looks just as mountainous. And you forget that you once thought, “I got through that other gunky stuff… I can get through anything.”
But tonight I’m remembering. I’m remembering where I’ve come from and using that lens to look at where I’m going. I am a Navy wife. And seriously–we can do just about anything. I went through a year five years ago that I once thought would send me to an underground bunker and came out on the other side. I’ve beaten PPD and done what I could to speak into other’s lives that they can too. I’ve traveled cross country with infants and toddlers. And I’ve figured out how to clean both Karo syrup and Honey off of my kitchen floor (and two year olds).
As for this tumor and the surgery and doing it all with a newborn and two other busy, amazing little girls. Well. I’m gonna get through that too.
Besides, the reason that I have been able to come to the other side of those other things isn’t because I’m so awesome and wonderful. It’s because of my God who is awesome and wonderful. And His goodness has carried me through. His faithfulness has buoyed me. His strength and His spirit have guided me. And, “When God is for us, who can be against us?”
In His strength and power I can wake up every day until baby gets here and lay my worries down and focus on her arrival. In His strength and power I can face the travel and tests and surgery that will help me to get rid of this thing in my neck. In his mercy and grace I will find blessings along the way and comfort and encouragement on the days when the mountains just look way too freaking big. And in his goodness and grace I’ll come to the other side and look back and say, “I got through that too. He got me through that too.”
When I went to see my doctor 7 months after Baboo came along to see if what I was feeling might be PPD, I kind of spilled my guts.
So much had happened in such a short time in the months and years previous to that day I felt like I didn’t have any sense of emotional equilibrium to compare with to I was feeling in that moment.
He assured me I did indeed have Postpartum Depression and I wasn’t particularly enthused about that. So I cried a little bit and freaked out a little bit. And tried to figure out a way that maybe it wasn’t PPD.
Then he said, “You’ve been through a lot. There’s no question on that. There have been a lot of ups and downs that you have gotten through in a very short time. And in the not too distant future, you are going to look back on this and say, ‘Hey. I got through that too.’”
I’ve said that very thing almost every time I’ve talked to another Mom going through PPD.
Since I got this crazy diagnosis I’ve been surviving. And sometimes I’ve felt good and ok. And sometimes I’ve felt scared stupid. Sometimes I’ve just felt pregnant.
It wasn’t until tonight that I thought about what my doctor said in the context of what’s going on right now. “In the not too distant future I’m going to look back and say, Hey. I got through that too.”
When we walk through trials and we come out on the other side, for a little bit we look at life from a new perspective. We feel empowered and like we really can conquer anything. I got through that horrific year when I lost my Mom, and my husband deployed, and my infant and I went to more funerals than anyone should in a single year and we lived in two different states. I got through PPD. I even remember how empowered I felt after I gave birth to my girls--especially with Carolyn. I couldn’t believe my body had made this perfect little person and sustained her life and pushed her out and I felt like I could truly do anything and face anything.
Eventually though that feeling fades and the humdrum stuff starts looking daunting again and it’s a struggle to get through a day with a five-year old and a three-year old who are both displaying quite an attitude while your feet are swelling and your gait is starting to resemble that of a penguin (not that that has happened lately or anything). And then the big stuff, that you thought in the face of the other stuff you’ve gone through wouldn’t look so intimidating looks just as mountainous. And you forget that you once thought, “I got through that other gunky stuff… I can get through anything.”
But tonight I’m remembering. I’m remembering where I’ve come from and using that lens to look at where I’m going. I am a Navy wife. And seriously–we can do just about anything. I went through a year five years ago that I once thought would send me to an underground bunker and came out on the other side. I’ve beaten PPD and done what I could to speak into other’s lives that they can too. I’ve traveled cross country with infants and toddlers. And I’ve figured out how to clean both Karo syrup and Honey off of my kitchen floor (and two year olds).
As for this tumor and the surgery and doing it all with a newborn and two other busy, amazing little girls. Well. I’m gonna get through that too.
Besides, the reason that I have been able to come to the other side of those other things isn’t because I’m so awesome and wonderful. It’s because of my God who is awesome and wonderful. And His goodness has carried me through. His faithfulness has buoyed me. His strength and His spirit have guided me. And, “When God is for us, who can be against us?”
In His strength and power I can wake up every day until baby gets here and lay my worries down and focus on her arrival. In His strength and power I can face the travel and tests and surgery that will help me to get rid of this thing in my neck. In his mercy and grace I will find blessings along the way and comfort and encouragement on the days when the mountains just look way too freaking big. And in his goodness and grace I’ll come to the other side and look back and say, “I got through that too. He got me through that too.”
Wednesday, September 15, 2010
And The Winner Is:
"Bob, Tell us who the winner is going to be. Will it be the illustrious Dr. Crazy Hair at UW and the McCast we've all grown so fond of or the mysterious 'super-experts' at the National Institute of Health (who better darn well be good if they're expecting us to travel 3000 miles to see them)?"
.....
....
And the winner is......NIH!!!
I'm settling there. It's time to settle. Or else Andrew will kick me in the head from going back and forth and obsessing about every little detail with him each and every night before finally dozing off mid-quandary (when he'd probably rather be doing other things... like... sleeping).
I had a really encouraging conversation this week with the research nurse involved with the Para/Pheo Study at NIH, who I believe does a lot of the coordinating of patients. Within a minute of talking to her I knew this was the way to go.
I am not chasing zebras. She assured me of that immediately It is my belief that while the doctors I have talked to here are excellent and proficient doctors that they aren't maybe as current on some of the more recent research about paragangliomas. A lot of new information has come out even just in the last few years and with a diagnosis as rare as this I think it would be easy for that research to go unnoticed. Do I think that they could have done the surgery just fine? Absolutely. Do I think that I would have had all of my questions answered and/or been set up for follow-up down the line to see what may or may not happen after Tomas takes a hike? No. And I think that within the parameters of TriCare and the referrals process it would have been difficult, maybe not impossible, to find a doctor who knows enough about Paras for me to feel comfortable. This is the way to go. It might not be the 'easy road' logistically, but I think in the end it will allow me to 'rest easier' knowing that I have ALL the information that I can get about my Tumor and what that means for my future.
The travel and the logistics will be difficult. I hope, that in the end, it will be worth it to know that I covered all of my bases. Even if I find out that I DON'T have any need to worry about the 'extra stuff' with gene mutations and recurrence and what not I will feel relieved to hear that from THE experts in this field. AND if I do deal with this on down the line I'll already know where to go to be taken care of from all angles of these cases.
I even found out that with some pumping and dumping there is a good chance that I'll be able to continue to breastfeed and that does this hormonal Mama's (who doesn't know what to do with a baby outside of that option--though I'm no Lactivist to be sure) heart good.
On top of all that, my experience so far is that these people go the extra mile to make sure that a patient is informed and reassured about care there. This amazing woman called me on her cell phone while driving to a conference in another state. The ensuing conversation was a little choppy and humorous because the state of Pennsylvania's cell phone signal is apparently spotty at best, but still... That's service.
There will be an initial visit after I make contact with NIH for the scans and full work up to make sure that this is ALL we're dealing with, to find out about the gene stuff, and to get a good solid look at Tomas really for the first time since my scan options have been limited because of the pregnancy. While we're there we'll talk to the surgical team and find out the whens and hows and why are we doing that's of the surgery which will occur sometime after the testing.
Having this piece settled is a relief. I've been agonizing over 'the right decision' for so long. I think it's time to hitch my wagon to this and make it 'the plan' if only to hold onto my sanity.
(Since this entry isn't at all funny, I will simply add here that when I found out that C's Kindergarten teacher's name was "Ms. Thomas" I immediately thought, "Oh Great! She has the same name as my tumor!!!!")
For those of you who pray, I do have one thing for you to especially pray for now that we have this settled: I want to look forward to my new little miracle's arrival. I want to think all things pink and soft and tulle-y and anticipate her little nails and ears and eyebrows and coos and smiles without immediately jumping to "After the baby comes, I have surgery," in my brain. To be sure, once she is here she will be cherished. To be sure she is already especially cherished--maybe even more so because of the x-factors that landed in this pregnancy. It has been hard for me though to let myself feel excited without feeling trepidatious either about the tumor and the treatment and all that will follow or about another thing coming out of left field that could be harmful for me or baby. Please pray that I could experience the joy of expecting this little girl (who for now is called Beanetta Fae Hillary Beula R. because of the many people who love her with us ;)). And you know... also pray that all would go well with this surgery and there would be no surprises and that I could, ya know... Be around for years and years and years with my gorgeous trio of R. princesses.
.....
....
And the winner is......NIH!!!
I'm settling there. It's time to settle. Or else Andrew will kick me in the head from going back and forth and obsessing about every little detail with him each and every night before finally dozing off mid-quandary (when he'd probably rather be doing other things... like... sleeping).
I had a really encouraging conversation this week with the research nurse involved with the Para/Pheo Study at NIH, who I believe does a lot of the coordinating of patients. Within a minute of talking to her I knew this was the way to go.
I am not chasing zebras. She assured me of that immediately It is my belief that while the doctors I have talked to here are excellent and proficient doctors that they aren't maybe as current on some of the more recent research about paragangliomas. A lot of new information has come out even just in the last few years and with a diagnosis as rare as this I think it would be easy for that research to go unnoticed. Do I think that they could have done the surgery just fine? Absolutely. Do I think that I would have had all of my questions answered and/or been set up for follow-up down the line to see what may or may not happen after Tomas takes a hike? No. And I think that within the parameters of TriCare and the referrals process it would have been difficult, maybe not impossible, to find a doctor who knows enough about Paras for me to feel comfortable. This is the way to go. It might not be the 'easy road' logistically, but I think in the end it will allow me to 'rest easier' knowing that I have ALL the information that I can get about my Tumor and what that means for my future.
The travel and the logistics will be difficult. I hope, that in the end, it will be worth it to know that I covered all of my bases. Even if I find out that I DON'T have any need to worry about the 'extra stuff' with gene mutations and recurrence and what not I will feel relieved to hear that from THE experts in this field. AND if I do deal with this on down the line I'll already know where to go to be taken care of from all angles of these cases.
I even found out that with some pumping and dumping there is a good chance that I'll be able to continue to breastfeed and that does this hormonal Mama's (who doesn't know what to do with a baby outside of that option--though I'm no Lactivist to be sure) heart good.
On top of all that, my experience so far is that these people go the extra mile to make sure that a patient is informed and reassured about care there. This amazing woman called me on her cell phone while driving to a conference in another state. The ensuing conversation was a little choppy and humorous because the state of Pennsylvania's cell phone signal is apparently spotty at best, but still... That's service.
There will be an initial visit after I make contact with NIH for the scans and full work up to make sure that this is ALL we're dealing with, to find out about the gene stuff, and to get a good solid look at Tomas really for the first time since my scan options have been limited because of the pregnancy. While we're there we'll talk to the surgical team and find out the whens and hows and why are we doing that's of the surgery which will occur sometime after the testing.
Having this piece settled is a relief. I've been agonizing over 'the right decision' for so long. I think it's time to hitch my wagon to this and make it 'the plan' if only to hold onto my sanity.
(Since this entry isn't at all funny, I will simply add here that when I found out that C's Kindergarten teacher's name was "Ms. Thomas" I immediately thought, "Oh Great! She has the same name as my tumor!!!!")
For those of you who pray, I do have one thing for you to especially pray for now that we have this settled: I want to look forward to my new little miracle's arrival. I want to think all things pink and soft and tulle-y and anticipate her little nails and ears and eyebrows and coos and smiles without immediately jumping to "After the baby comes, I have surgery," in my brain. To be sure, once she is here she will be cherished. To be sure she is already especially cherished--maybe even more so because of the x-factors that landed in this pregnancy. It has been hard for me though to let myself feel excited without feeling trepidatious either about the tumor and the treatment and all that will follow or about another thing coming out of left field that could be harmful for me or baby. Please pray that I could experience the joy of expecting this little girl (who for now is called Beanetta Fae Hillary Beula R. because of the many people who love her with us ;)). And you know... also pray that all would go well with this surgery and there would be no surprises and that I could, ya know... Be around for years and years and years with my gorgeous trio of R. princesses.
Monday, September 6, 2010
It's All in My Head
To go to NIH, or not to go to NIH: THAT is the question.
For those who are wondering there is no new news on Tomas. He's still just hanging out on my neck. Following my day in Grey's Anatomy I went on a Walk to Emmaus for four days and basked in the reality of God's love *happy sigh* and following my Walk to Emmaus, we packed up and left town. We took a vacation to IL. And *I* took a vacation from Tomas. It was lovely. I didn't make Doctor's appointments. I didn't go to Doctor's appointments. I didn't spend hours on Google. I floated in the pool and spent time with people I loved and it was great.
Now we're home and I need to get back on track. And I have. I had a regular old OB appointment this week--How am I already just days away from my third trimester?! I contacted NIH again with more questions. And, after I figure out what this school schedule looks like I'll figure out a time to go get the MRI that has been ordered for a while done.
In the meantime... It's all been a mind game. I have prayed. I have ruminated. I have wondered. I have worried. And I have tried to figure out--NIH or not?
I've Googled, of course. That's led to some interesting information. The whole 'cancerous or not' issue has been clarified. Paragangliomas are apparently such boogers that you don't know if they are cancerous until they start acting like cancer, which can take years. So with most tumors you take them out and a pathologists looks at them and says, "Yep this one is cancer," or "Nope, this one isn't." But with Paras they all look the same. So unless they metastasize initially or down the line they're classified as 'benign.' Interesting, eh? Then if 2 or 3 or even 10 or 15 years down the line if you end up with a metastasis, then.... THEN it's classified as 'cancerous.'
And..... THIS is good news: Carotid Body Tumors really are generally benign.
I've also read a bit more about the SDH mutations and their prevalence and what it means if you have different ones. And I find that I still have lots of questions revolving around that issue and how it may or may not pertain to me and I find that if it does... I want more than just the cut it out and go thinking to prevail.
So I've collected all this information. And honestly the information makes me want an experty expert.
BUT...
I still feel like I'm chasing zebras. And that makes me feel foolish. And I don't like to feel foolish. So I worry and stew about my foolishness. Like it matters what Dr. #1 thinks who has only seen 5 of these in older people or what Dr. Crazy Hair thinks who has seen lots more of them but dismisses the possibility of a genetic component despite the vast amount of information I've been able to find just through Dr. Google about the potential for a genetic mutation especially in people diagnosed at younger ages with a para in their heads or necks.
And I think I'm starting to conclude that it doesn't matter what they think. That I am my own expert at this point. And that I do need more answers. Which means: NIH.
But then I come up against this other thing and that is: Going to the other side of the country for treatment is really complicated and scary and expensive. I don't know what it all looks like yet either past, "Call me when you have your baby and we'll schedule your visits." And maybe if I knew more about what it all would look like I could relax, but I don't know what it looks like so I'm left to look at this vastness of "I don't know," and I really don't like that. And maybe I'll end up being in the majority here and not have to ever worry about Tomas or any of his relatives ever in my life and then we'll have spent all that travel time and money and worry over nothing and isn't that silly? And then I go back to thinking I'm chasing Zebras again.
You see the problem.
It's all mental for the moment. It's all speculation and wondering and trying not to make a big deal out of a stupid silly tumor on the one hand (because... say it with me now everybody, "It could really be much worse!") and on the other hand going, "Ohmygosh I have a tumor on my carotid artery and I'm gonna need surgery (maybe on the other side of the country?) and that is really scary."
And THEN. THEN. THEN I go: Hello... Peace that passes all understanding? I need a little bit of you!!!!
And then I calm down. For a while. Because He's got me in the palm of my hand no matter which direction this thing goes. And He is good. And loving. And incredibly FOR me. And I remember the *happy sigh* love I came back to awareness of on my Walk to Emmaus. And I know that He is big enough for me to just rest.
And I get off the crazy train for a little bit.
For those who are wondering there is no new news on Tomas. He's still just hanging out on my neck. Following my day in Grey's Anatomy I went on a Walk to Emmaus for four days and basked in the reality of God's love *happy sigh* and following my Walk to Emmaus, we packed up and left town. We took a vacation to IL. And *I* took a vacation from Tomas. It was lovely. I didn't make Doctor's appointments. I didn't go to Doctor's appointments. I didn't spend hours on Google. I floated in the pool and spent time with people I loved and it was great.
Now we're home and I need to get back on track. And I have. I had a regular old OB appointment this week--How am I already just days away from my third trimester?! I contacted NIH again with more questions. And, after I figure out what this school schedule looks like I'll figure out a time to go get the MRI that has been ordered for a while done.
In the meantime... It's all been a mind game. I have prayed. I have ruminated. I have wondered. I have worried. And I have tried to figure out--NIH or not?
I've Googled, of course. That's led to some interesting information. The whole 'cancerous or not' issue has been clarified. Paragangliomas are apparently such boogers that you don't know if they are cancerous until they start acting like cancer, which can take years. So with most tumors you take them out and a pathologists looks at them and says, "Yep this one is cancer," or "Nope, this one isn't." But with Paras they all look the same. So unless they metastasize initially or down the line they're classified as 'benign.' Interesting, eh? Then if 2 or 3 or even 10 or 15 years down the line if you end up with a metastasis, then.... THEN it's classified as 'cancerous.'
And..... THIS is good news: Carotid Body Tumors really are generally benign.
I've also read a bit more about the SDH mutations and their prevalence and what it means if you have different ones. And I find that I still have lots of questions revolving around that issue and how it may or may not pertain to me and I find that if it does... I want more than just the cut it out and go thinking to prevail.
So I've collected all this information. And honestly the information makes me want an experty expert.
BUT...
I still feel like I'm chasing zebras. And that makes me feel foolish. And I don't like to feel foolish. So I worry and stew about my foolishness. Like it matters what Dr. #1 thinks who has only seen 5 of these in older people or what Dr. Crazy Hair thinks who has seen lots more of them but dismisses the possibility of a genetic component despite the vast amount of information I've been able to find just through Dr. Google about the potential for a genetic mutation especially in people diagnosed at younger ages with a para in their heads or necks.
And I think I'm starting to conclude that it doesn't matter what they think. That I am my own expert at this point. And that I do need more answers. Which means: NIH.
But then I come up against this other thing and that is: Going to the other side of the country for treatment is really complicated and scary and expensive. I don't know what it all looks like yet either past, "Call me when you have your baby and we'll schedule your visits." And maybe if I knew more about what it all would look like I could relax, but I don't know what it looks like so I'm left to look at this vastness of "I don't know," and I really don't like that. And maybe I'll end up being in the majority here and not have to ever worry about Tomas or any of his relatives ever in my life and then we'll have spent all that travel time and money and worry over nothing and isn't that silly? And then I go back to thinking I'm chasing Zebras again.
You see the problem.
It's all mental for the moment. It's all speculation and wondering and trying not to make a big deal out of a stupid silly tumor on the one hand (because... say it with me now everybody, "It could really be much worse!") and on the other hand going, "Ohmygosh I have a tumor on my carotid artery and I'm gonna need surgery (maybe on the other side of the country?) and that is really scary."
And THEN. THEN. THEN I go: Hello... Peace that passes all understanding? I need a little bit of you!!!!
And then I calm down. For a while. Because He's got me in the palm of my hand no matter which direction this thing goes. And He is good. And loving. And incredibly FOR me. And I remember the *happy sigh* love I came back to awareness of on my Walk to Emmaus. And I know that He is big enough for me to just rest.
And I get off the crazy train for a little bit.
Wednesday, July 28, 2010
Who's Got the Big Picture and How Many Zebras are There?
We're back from UW, and I'm beat and have no idea if I have it in me to make this a fun and pithy entry. But we'll give it a go.
We made the long drive, and I realized for the 279th time that I'm a country bumpkin. I did not feel at all at home in the big, impersonal medical hugeness around me. We waited for an hour in the waiting room, but eventually were called back.
After the nurse checked us in, a guy poked his head in and said in Andy's general direction, "Let me just look at some paperwork then I'll be right with you, sir." Now, two things I found a little disconcerting about this: 1) Andy wasn't the patient. I was. And I would think that a cursory glance at a chart would give one that general impression upon entering our room and 2) This wasn't the surgeon I thought I was going to see. We all know I do my homework and I'd looked the guy up. My surgeon was supposed to have unique teeth and rather--could only really be pulled off by somebody super smart--shocking hair. This kid looked like one of the smaller bit characters from Grey's anatomy (there ya go, Amy!). So I sat there and ruminated upon this and postulated that perhaps this gentleman was an intern or a resident and that brought my blood pressure down slightly. On the off chance he wasn't going to come in and tell me he was an intern or resident, I rehearsed a little speech about driving 2 hours, and waiting 1 hour, and doing my homework and demanding to see the guy with the smart-shocked hair.
The resident came back in and addressed me this time and explained that he was indeed a resident. And since he was a little Grey's Anatomyesque I think we shall name him. I'll call him McNervous since he seemed quite tentative about quizzing and examining me and also was rather embarassed to report later that the CBT discovery had been made during a routine "OBum...GYN check-up" for the pregnancy. He assured me that the surgeon that I expected would be in shortly after he asked me a bunch of questions and gave me a preliminary exam. So he did all that. He got my MRI and ultrasound reports and my lab test results all together and popped in the MRI disc. And while we're at this point can I just ask--why do the chairs in ENT's offices have to be so freaky? I once proposed to Dr. Lee, the ENT who took care of me frequently when I was a little girl, and I don't remember him having a chair that freaky, but the docs I've seen out here--their chairs are scary.. They're very cushiony which is good, and have arms in them, but they make me feel claustrophobic. I did get to go on a few short little rides up and down in the thing though.
Finally the expected surgeon arrived with McNervous and an intern for good measure and showed me my MRI and talked about Carotid Body Paragangliomas in general and about the procedure in specific. I really DID think I'd stepped into Grey's at that point as McNervous had to report all the details of my case to the super-smart surgeon while Intern Guy took copious notes . He fielded all my questions which was good, and I did have tons of them, of course. I was happy to find that I could even stymie this particular world-class surgeon with a question. He was set a little off-balance when I asked his opinion about a trip to NIH. Yes, the Pathological Googling Question Fiend strikes again!
(Also, parenthetically I gotta say I loved the intern even though he said hardly anything. The one thing he DID say to me was, "Is the baby a boy or a girl?" and though I was too shaken to really show him that I appreciated that little bit of humanity when I answered, I love that he asked and that he warmly wished us luck with everything when we left).
So... Did I get the answers I wanted? Was this guy 'the one?' (I feel kind of like I'm back into a search along the lines of the one for the man with the yellow leg).
The short answer is this: I was impressed, but disappointed. While it was incredibly obvious immediately that this doctor was highly experienced, he didn't have the magic 'big picture' that I've been looking for. He *is* incredibly experienced. He told me he's done somewhere between 75-100 of these procedures. That's certainly a much higher and more reassuring number than the '2 and a few during fellowship' that surgeon #1 had under his belt. He knows the procedure frontwards and backwards and is anticipating all the potential variables. He assured me he would be working in tandem with a vascular surgeon which was one of my biggest questions about the procedure. In short, he's more than got the skills to do this procedure.
BUT (because everybody's got a big BUT), when I asked my questions about the possibility of a genetic mutation at the root of this problem given my age and the location of the tumor he totally shrugged it off. He indicated he doesn't do follow-up because he doesn't find it necessary. He believes these tumors to be almost always sporadic and saw absolutely no reason to investigate further to rule out the possibility that it's not. His big picture seems to mainly involve his scalpel and my discharge papers.
The doctor at NIH indicated that given the variables involved here (age, location, etc) that there was a 40-50% chance that I carried the SDH mutation. Which begs the question--Is NIH doc stacking the numbers because it's his specialty and that skews his perspective.... or is the risk for this genetic mutation really as low as super surgeon we saw today indicated?
Even more... If we decide to go with the extremely capable surgeon we saw today, would I be satisfied, or will I always wonder and worry that there is more to the story?
So at this point it looks like our choices are: 1) To go to NIH. To bite the bullet and deal with the logistical craziness and the extra cost of travel cross-country several times to be sure that we have THE BIGGEST OF BIG PICTURES. Or to 2) Go with super-capable guy here... and try to manage the big picture myself by being a good self-advocate.
I wonder also about getting an endocrinologist or oncologist on the team--an oncologist simply because they deal with tumors and follow ups and that sort of thing and because of the low possibility of malignancy, an endocrinologist because this is a tumor of the endocrine system. I want somebody smarter than me to have the big picture and to 'have my back' so to speak for the long term game, but I have no idea how to find that person or if TriCare will even LET me try to find that person.
In addition, I fear that I really have over-researched... That I've made myself wonder about all of these possibilities that the doctors I have seen so far keep assuring me amount to chasing zebras. (And again I say--when you've caught one zebra in your living room, you can't help but wonder if the rest of the herd has come to visit!). On the other hand, I also don't want to look back in 5 or 7 years and find that I'm dealing with metastatic disease or a recurrence or a new para on some other part of my body and think, "Boy I wish I'd pushed harder to find out more when I had that thing removed," or even, "If only I'd known _____ then."
So I did get more information. I do know that I have a more than capable surgeon in this part of the world.... But I'm still left at a quandry as to what to do about 'The Big Picture.'
At least I got to hang out with my own 'McCast' for a while.
We made the long drive, and I realized for the 279th time that I'm a country bumpkin. I did not feel at all at home in the big, impersonal medical hugeness around me. We waited for an hour in the waiting room, but eventually were called back.
After the nurse checked us in, a guy poked his head in and said in Andy's general direction, "Let me just look at some paperwork then I'll be right with you, sir." Now, two things I found a little disconcerting about this: 1) Andy wasn't the patient. I was. And I would think that a cursory glance at a chart would give one that general impression upon entering our room and 2) This wasn't the surgeon I thought I was going to see. We all know I do my homework and I'd looked the guy up. My surgeon was supposed to have unique teeth and rather--could only really be pulled off by somebody super smart--shocking hair. This kid looked like one of the smaller bit characters from Grey's anatomy (there ya go, Amy!). So I sat there and ruminated upon this and postulated that perhaps this gentleman was an intern or a resident and that brought my blood pressure down slightly. On the off chance he wasn't going to come in and tell me he was an intern or resident, I rehearsed a little speech about driving 2 hours, and waiting 1 hour, and doing my homework and demanding to see the guy with the smart-shocked hair.
The resident came back in and addressed me this time and explained that he was indeed a resident. And since he was a little Grey's Anatomyesque I think we shall name him. I'll call him McNervous since he seemed quite tentative about quizzing and examining me and also was rather embarassed to report later that the CBT discovery had been made during a routine "OBum...GYN check-up" for the pregnancy. He assured me that the surgeon that I expected would be in shortly after he asked me a bunch of questions and gave me a preliminary exam. So he did all that. He got my MRI and ultrasound reports and my lab test results all together and popped in the MRI disc. And while we're at this point can I just ask--why do the chairs in ENT's offices have to be so freaky? I once proposed to Dr. Lee, the ENT who took care of me frequently when I was a little girl, and I don't remember him having a chair that freaky, but the docs I've seen out here--their chairs are scary.. They're very cushiony which is good, and have arms in them, but they make me feel claustrophobic. I did get to go on a few short little rides up and down in the thing though.
Finally the expected surgeon arrived with McNervous and an intern for good measure and showed me my MRI and talked about Carotid Body Paragangliomas in general and about the procedure in specific. I really DID think I'd stepped into Grey's at that point as McNervous had to report all the details of my case to the super-smart surgeon while Intern Guy took copious notes . He fielded all my questions which was good, and I did have tons of them, of course. I was happy to find that I could even stymie this particular world-class surgeon with a question. He was set a little off-balance when I asked his opinion about a trip to NIH. Yes, the Pathological Googling Question Fiend strikes again!
(Also, parenthetically I gotta say I loved the intern even though he said hardly anything. The one thing he DID say to me was, "Is the baby a boy or a girl?" and though I was too shaken to really show him that I appreciated that little bit of humanity when I answered, I love that he asked and that he warmly wished us luck with everything when we left).
So... Did I get the answers I wanted? Was this guy 'the one?' (I feel kind of like I'm back into a search along the lines of the one for the man with the yellow leg).
The short answer is this: I was impressed, but disappointed. While it was incredibly obvious immediately that this doctor was highly experienced, he didn't have the magic 'big picture' that I've been looking for. He *is* incredibly experienced. He told me he's done somewhere between 75-100 of these procedures. That's certainly a much higher and more reassuring number than the '2 and a few during fellowship' that surgeon #1 had under his belt. He knows the procedure frontwards and backwards and is anticipating all the potential variables. He assured me he would be working in tandem with a vascular surgeon which was one of my biggest questions about the procedure. In short, he's more than got the skills to do this procedure.
BUT (because everybody's got a big BUT), when I asked my questions about the possibility of a genetic mutation at the root of this problem given my age and the location of the tumor he totally shrugged it off. He indicated he doesn't do follow-up because he doesn't find it necessary. He believes these tumors to be almost always sporadic and saw absolutely no reason to investigate further to rule out the possibility that it's not. His big picture seems to mainly involve his scalpel and my discharge papers.
The doctor at NIH indicated that given the variables involved here (age, location, etc) that there was a 40-50% chance that I carried the SDH mutation. Which begs the question--Is NIH doc stacking the numbers because it's his specialty and that skews his perspective.... or is the risk for this genetic mutation really as low as super surgeon we saw today indicated?
Even more... If we decide to go with the extremely capable surgeon we saw today, would I be satisfied, or will I always wonder and worry that there is more to the story?
So at this point it looks like our choices are: 1) To go to NIH. To bite the bullet and deal with the logistical craziness and the extra cost of travel cross-country several times to be sure that we have THE BIGGEST OF BIG PICTURES. Or to 2) Go with super-capable guy here... and try to manage the big picture myself by being a good self-advocate.
I wonder also about getting an endocrinologist or oncologist on the team--an oncologist simply because they deal with tumors and follow ups and that sort of thing and because of the low possibility of malignancy, an endocrinologist because this is a tumor of the endocrine system. I want somebody smarter than me to have the big picture and to 'have my back' so to speak for the long term game, but I have no idea how to find that person or if TriCare will even LET me try to find that person.
In addition, I fear that I really have over-researched... That I've made myself wonder about all of these possibilities that the doctors I have seen so far keep assuring me amount to chasing zebras. (And again I say--when you've caught one zebra in your living room, you can't help but wonder if the rest of the herd has come to visit!). On the other hand, I also don't want to look back in 5 or 7 years and find that I'm dealing with metastatic disease or a recurrence or a new para on some other part of my body and think, "Boy I wish I'd pushed harder to find out more when I had that thing removed," or even, "If only I'd known _____ then."
So I did get more information. I do know that I have a more than capable surgeon in this part of the world.... But I'm still left at a quandry as to what to do about 'The Big Picture.'
At least I got to hang out with my own 'McCast' for a while.
Saturday, July 24, 2010
Tumah Diva
It's not really an update per se, but I thought I'd plop down a post about how Tomas and I are getting along. I gotta tell you, sometimes he's a pain in the neck.
Ok, well... For all intents and purposes the tumor is 'painless,' though, I do have some tenderness in that area and I am hyper-aware of Tomas's presence. Maybe it's psychosomatic at this point, but when I turn my head or even really think about that part of my body I'm aware that there's a 'thing' there. Other than that I don't really have 'symptoms,' for which I am extremely grateful. Other tumors of this type (paragangliomas) can sometimes have some symptoms that are scary.
My emotions have been quite a roller-coaster from the get go. I'm starting to find a bit more of an even keel at this point, but I still have my moments. I've run the full gamut of feelings and a select number of individuals have been privy to some of those.
I have never been a fan of 'keeping things in perspective.' I don't like playing the 'it could be so much worse, so why should I feel bad?' game. I always figure that it's only going to make me feel worse to think about someone who is worse off than me. You know.... that pesky empathy thing. So I try to remember that my trouble is my own, and as a wise friend once reminded me 'the greatest pain you'll ever feel is your own.' In addition, I have a pretty good scope of perspective anyway since in the middle of my first pregnancy I got the news that my Mom had terminal cancer. There are plenty of things that this could have been that would have been much worse. As far as bad stuff going on in the body goes, my heart has gone on enough journeys with enough people I love to recognize what a blessing it is that this thing is treatable.
All that being said, I cannot escape the fact that *I* have a rare tumor in my body--and, y'know, the Carotid Artery is kind of a delicate and important part of the body. I can't forget for very long that the thing I feel in my neck will eventually be removed during a fairly delicate surgical procedure, and that said procedure will occur not long after I have a baby. I am reminded fairly frequently that this thing is rare and that the pathways to get my questions answered are limited (and we all know I ask a lot of questions). Plus, it kind of makes my head spin that suddenly I'm the girl who has to go to the super specialists. I thought only people on Lifetime movies needed doctors like that.
And for crying out loud, folks, I am a pregnant woman. People generally give preggos a break for crying during Hallmark commercials, so I try to give myself a little grace in the face of dealing with emotional outbursts having to do with a Carotid Body Tumor!
I've worried this weekend that I'm being a diva about it all. I hope that people don't think I'm over here going, "Look at me! Look at me! I'm pregnant and have a paraganglioma! Give me attention!" No. A tumor diva is the last thing that I want to be. As a person who has learned that I weather emotions better when I make it a point to verbally process them somewhere, I do try to do that with the people that I know will love me no matter what. And, if I'm asked for an update or talking with someone that I don't talk to often, I find it hard to be succinct in my explanations.... Maybe that makes me seem self-pitying or self-important... I don't know. I also know that since nothing too dramatic is going to happen on the tumor front until after baby is born it will just seem to most people--even those that know the whole story--that I'm a normal pregnant woman going through a normal pregnancy. I feel like I'm expected to see things that way too. To 'just focus on the baby in the meantime.' And I do try to. I do.
And speaking of pregnancy--I read weekly about the progress going on in my womb on various pregnancy websites and they all have message boards where women talk about their heartburn and hemorrhoids and how fat they feel and I always feel slightly tempted to write a post and say, "Yeah I hear you on the heartburn.... And this whole Carotid Body Tumor thing is kind of a kick too! Anybody else had any experience with one of those during pregnancy?!" just to see what kind of a response I get.
Ok. So I guess that would be me going "I have a tumor, Look at Me! Look at Me!" right?
The point is, I try not to think about it constantly. I try not to make the whole world about my tumor. (Although I will admit to saying things to Andy on occasion like, "Honey... could you get me a glass of water... The kitchen is so far away and I do have a tumor after all...." ;)). I try not to dominate conversations with it. I try not to be all, 'Me, Me, Me.' I WANT my world to be about my sweet little girl and her two equally sweet big sisters too. God is my ultimate focus and He is bringing me through this. And... I'm a girl who loves deeply and feels deeply for others and I want to be intimately involved in the joys and concerns of my friends and family too.
All that said, it doesn't go away for me. And it won't go away for a while. Depending on what we learn about my genes it may be something that we deal with on down the line too.
So I slog through and remind myself that, "It IS a Tumah, But it's not all about the Tumah!" Past that I don't know what to do. But I promise I'll try not to be a Tumah Diva.
Ok, well... For all intents and purposes the tumor is 'painless,' though, I do have some tenderness in that area and I am hyper-aware of Tomas's presence. Maybe it's psychosomatic at this point, but when I turn my head or even really think about that part of my body I'm aware that there's a 'thing' there. Other than that I don't really have 'symptoms,' for which I am extremely grateful. Other tumors of this type (paragangliomas) can sometimes have some symptoms that are scary.
My emotions have been quite a roller-coaster from the get go. I'm starting to find a bit more of an even keel at this point, but I still have my moments. I've run the full gamut of feelings and a select number of individuals have been privy to some of those.
I have never been a fan of 'keeping things in perspective.' I don't like playing the 'it could be so much worse, so why should I feel bad?' game. I always figure that it's only going to make me feel worse to think about someone who is worse off than me. You know.... that pesky empathy thing. So I try to remember that my trouble is my own, and as a wise friend once reminded me 'the greatest pain you'll ever feel is your own.' In addition, I have a pretty good scope of perspective anyway since in the middle of my first pregnancy I got the news that my Mom had terminal cancer. There are plenty of things that this could have been that would have been much worse. As far as bad stuff going on in the body goes, my heart has gone on enough journeys with enough people I love to recognize what a blessing it is that this thing is treatable.
All that being said, I cannot escape the fact that *I* have a rare tumor in my body--and, y'know, the Carotid Artery is kind of a delicate and important part of the body. I can't forget for very long that the thing I feel in my neck will eventually be removed during a fairly delicate surgical procedure, and that said procedure will occur not long after I have a baby. I am reminded fairly frequently that this thing is rare and that the pathways to get my questions answered are limited (and we all know I ask a lot of questions). Plus, it kind of makes my head spin that suddenly I'm the girl who has to go to the super specialists. I thought only people on Lifetime movies needed doctors like that.
And for crying out loud, folks, I am a pregnant woman. People generally give preggos a break for crying during Hallmark commercials, so I try to give myself a little grace in the face of dealing with emotional outbursts having to do with a Carotid Body Tumor!
I've worried this weekend that I'm being a diva about it all. I hope that people don't think I'm over here going, "Look at me! Look at me! I'm pregnant and have a paraganglioma! Give me attention!" No. A tumor diva is the last thing that I want to be. As a person who has learned that I weather emotions better when I make it a point to verbally process them somewhere, I do try to do that with the people that I know will love me no matter what. And, if I'm asked for an update or talking with someone that I don't talk to often, I find it hard to be succinct in my explanations.... Maybe that makes me seem self-pitying or self-important... I don't know. I also know that since nothing too dramatic is going to happen on the tumor front until after baby is born it will just seem to most people--even those that know the whole story--that I'm a normal pregnant woman going through a normal pregnancy. I feel like I'm expected to see things that way too. To 'just focus on the baby in the meantime.' And I do try to. I do.
And speaking of pregnancy--I read weekly about the progress going on in my womb on various pregnancy websites and they all have message boards where women talk about their heartburn and hemorrhoids and how fat they feel and I always feel slightly tempted to write a post and say, "Yeah I hear you on the heartburn.... And this whole Carotid Body Tumor thing is kind of a kick too! Anybody else had any experience with one of those during pregnancy?!" just to see what kind of a response I get.
Ok. So I guess that would be me going "I have a tumor, Look at Me! Look at Me!" right?
The point is, I try not to think about it constantly. I try not to make the whole world about my tumor. (Although I will admit to saying things to Andy on occasion like, "Honey... could you get me a glass of water... The kitchen is so far away and I do have a tumor after all...." ;)). I try not to dominate conversations with it. I try not to be all, 'Me, Me, Me.' I WANT my world to be about my sweet little girl and her two equally sweet big sisters too. God is my ultimate focus and He is bringing me through this. And... I'm a girl who loves deeply and feels deeply for others and I want to be intimately involved in the joys and concerns of my friends and family too.
All that said, it doesn't go away for me. And it won't go away for a while. Depending on what we learn about my genes it may be something that we deal with on down the line too.
So I slog through and remind myself that, "It IS a Tumah, But it's not all about the Tumah!" Past that I don't know what to do. But I promise I'll try not to be a Tumah Diva.
Thursday, July 15, 2010
Counting with Val
Total number of visits to see medical professionals for the months of June and July: 14. And those were all for me!
Wednesday, July 14, 2010
Busy Week of Doctors and Doctor Crushes
I'm in the middle of three days of doctor's appointments. I wish I got paid for going to them because they are becoming a full-time job. Three down, one to go for this week.
So far the visits have been extremely positive even though in some respects they haven't moved us very far forward. Yesterday morning, I FINALLY got to have an ultrasound of the BABY and not some random body part. And SHE (that's right it's another girl!) is beautiful. She has the cutest little nose and lips. And she's busy. I knew this already as I felt her moving far earlier in this pregnancy than any of the others and she pretty much moves constantly. But it was so fun to be able to put pictures and movement to the sensations I've been feeling for the last few weeks. She's just beautiful and it did a mama good to spend an hour looking our sweet little girlie. Of course it was also good to see my new friend, Jim the ultrasound guy, again. He sort of recognized me when I walked back, but he couldn't place me. Then I told him I was 'his carotid body tumor' and he very enthusiastically asked if we were still planning on going to NIH. I might not have a memorable face, but once you see my carotid artery, you won't forget me!
As for the party in my neck we saw an ENT yesterday, supposedly about the Thyroid. He was tremendously encouraging and competent.... and in a bizarrely reassuring way he washed his hands of me. He basically told us to have whoever deals with Tomas do everything. Andy and I had to laugh: The consult was for the Thyroid issue solely. The doc came in, talked a lot about Tomas, looked at my ears, nose, and throat, didn't touch my neck or ask about my Thyroid at all, and referred us up to the surgeon we already had an appointment with for Tomas (which was reassuring in and of itself. We're seeing a good guy!). Then he breezed out of the room. When he left, Andy looked and me and said, "Um... I really, really like this doctor but did he say anything about your Thyroid?!" We eventually got most of our questions answered, but I think the function of the visit ultimately was just to reassure us that we're on the right track with all of the issues as we didn't get any new information about the Thyroid stuff and no further action was or will betaken by this doc. But you know... at least he cleaned out my ears!
I think it was also confirmation that we needed to get that second opinion. The difference between the demeanor of this doctor and that of surgeon #1 was quite telling. This doctor seemed to know far more about Carotid Body Tumors and paragangliomas, but felt we were in better hands with a more experienced specialist than him. Surgeon #1 has seen some CBTs and knows about them, but still didn't seem to have as great of a feel for them. Yet, he was ready to do the surgery himself anyway.
My appointment today resulted in a new doctor-crush. I am, for whatever reason, especially susceptible to Doctor-crushes (I was totally smitten with Doogie Howser when I was growing up. I admit it). I was left today wishing I could take this surgeon with me to help with all the other problems and procedures. She was so very reassuring. The other 'issue' we've been running to ground was basically ruling out any need to be concerned about breast cancer. No--no lumps--but other symptoms which were cause for concern to me and my Navy docs had cropped up. This doctor said that she is certain I have no reason to worry: that what we're seeing is nothing more than hormones run-amok and my body adjusting to those and preparing to feed the babe. Then she listened to me worry out loud about the other stuff and admonished me to 'not let it steal my joy.' Did I mention that I thought she was wonderful? I was almost disappointed that I wouldn't get to go see her again. Almost.... Except for the tiny little fact that I'm elated that now at least there's one issue OFF the table.
One more appointment tomorrow and that's a follow-up with surgeon #1. We'll get the results of the MRI and lab tests and maybe get a bit more general information. I was advised by a certain medically inclined and very wise sister-in-law not to crush the doctor-ego by waltzing in and saying, "Hi Surgeon #1. Your bedside manner is nice enough, but we don't think you're our guy for this surgery. You're fired!" So, alas, we'll play nice and vaguely refer to the fact that we're exploring all of our options. Still I do hope to get some information and add to our collection of radiology reports and discs.
After that, it's full speed ahead toward our appointment at UW in two weeks (though I still don't get a break from appointments: next week I have a regular OB check-up, a visit to the dentist for fillings, and a trip to legal to make sure all my ducks are in a row if I kick off unexpectedly). After the appointment at UW, I anticipate we'll start being able to make some decisions and get a feel for the game plan. Stay tuned for that. Then I hope things are going to get boring around here until it's time to make things happen!
So far the visits have been extremely positive even though in some respects they haven't moved us very far forward. Yesterday morning, I FINALLY got to have an ultrasound of the BABY and not some random body part. And SHE (that's right it's another girl!) is beautiful. She has the cutest little nose and lips. And she's busy. I knew this already as I felt her moving far earlier in this pregnancy than any of the others and she pretty much moves constantly. But it was so fun to be able to put pictures and movement to the sensations I've been feeling for the last few weeks. She's just beautiful and it did a mama good to spend an hour looking our sweet little girlie. Of course it was also good to see my new friend, Jim the ultrasound guy, again. He sort of recognized me when I walked back, but he couldn't place me. Then I told him I was 'his carotid body tumor' and he very enthusiastically asked if we were still planning on going to NIH. I might not have a memorable face, but once you see my carotid artery, you won't forget me!
As for the party in my neck we saw an ENT yesterday, supposedly about the Thyroid. He was tremendously encouraging and competent.... and in a bizarrely reassuring way he washed his hands of me. He basically told us to have whoever deals with Tomas do everything. Andy and I had to laugh: The consult was for the Thyroid issue solely. The doc came in, talked a lot about Tomas, looked at my ears, nose, and throat, didn't touch my neck or ask about my Thyroid at all, and referred us up to the surgeon we already had an appointment with for Tomas (which was reassuring in and of itself. We're seeing a good guy!). Then he breezed out of the room. When he left, Andy looked and me and said, "Um... I really, really like this doctor but did he say anything about your Thyroid?!" We eventually got most of our questions answered, but I think the function of the visit ultimately was just to reassure us that we're on the right track with all of the issues as we didn't get any new information about the Thyroid stuff and no further action was or will betaken by this doc. But you know... at least he cleaned out my ears!
I think it was also confirmation that we needed to get that second opinion. The difference between the demeanor of this doctor and that of surgeon #1 was quite telling. This doctor seemed to know far more about Carotid Body Tumors and paragangliomas, but felt we were in better hands with a more experienced specialist than him. Surgeon #1 has seen some CBTs and knows about them, but still didn't seem to have as great of a feel for them. Yet, he was ready to do the surgery himself anyway.
My appointment today resulted in a new doctor-crush. I am, for whatever reason, especially susceptible to Doctor-crushes (I was totally smitten with Doogie Howser when I was growing up. I admit it). I was left today wishing I could take this surgeon with me to help with all the other problems and procedures. She was so very reassuring. The other 'issue' we've been running to ground was basically ruling out any need to be concerned about breast cancer. No--no lumps--but other symptoms which were cause for concern to me and my Navy docs had cropped up. This doctor said that she is certain I have no reason to worry: that what we're seeing is nothing more than hormones run-amok and my body adjusting to those and preparing to feed the babe. Then she listened to me worry out loud about the other stuff and admonished me to 'not let it steal my joy.' Did I mention that I thought she was wonderful? I was almost disappointed that I wouldn't get to go see her again. Almost.... Except for the tiny little fact that I'm elated that now at least there's one issue OFF the table.
One more appointment tomorrow and that's a follow-up with surgeon #1. We'll get the results of the MRI and lab tests and maybe get a bit more general information. I was advised by a certain medically inclined and very wise sister-in-law not to crush the doctor-ego by waltzing in and saying, "Hi Surgeon #1. Your bedside manner is nice enough, but we don't think you're our guy for this surgery. You're fired!" So, alas, we'll play nice and vaguely refer to the fact that we're exploring all of our options. Still I do hope to get some information and add to our collection of radiology reports and discs.
After that, it's full speed ahead toward our appointment at UW in two weeks (though I still don't get a break from appointments: next week I have a regular OB check-up, a visit to the dentist for fillings, and a trip to legal to make sure all my ducks are in a row if I kick off unexpectedly). After the appointment at UW, I anticipate we'll start being able to make some decisions and get a feel for the game plan. Stay tuned for that. Then I hope things are going to get boring around here until it's time to make things happen!
Tuesday, July 6, 2010
Incidentally
So way back when they discovered Tomas was hanging out on my Carotid, we also found out he had some friends in my Thyroid. I've got a nodule, some cysts, and a Thyroid that is apparently a little over-sized all having a party in my neck. So the doctor put in a consult for that too.
A week or two later yet another issue presented itself. This one is likely related to pregnancy. We're running it to ground to find out and yet another consult was put in. So far there aren't any lumps or bumps involved with this one. I'm sure hoping to keep it that way.
So what that means is I get to see lots of doctors right now. I mean lots of doctors. More doctors than I have seen in years. What's the current count as of now? 2 GPs, a vascular surgeon, a general surgeon, an ENT surgeon. Those are the ones I have seen or will see in person in the coming weeks. Plus there's at least one referral that hasn't been put all the way through yet. And then there's email contact with Doctor Great at NIH, so far....
It also means I've gotten lots of ultrasounds. Every pregnant woman wants to have lots of ultrasounds, right?! EXCEPT WE WANT TO HAVE THEM BE OF THE BABY!!!! Someone didn't get the memo on that. Going on #4 today.
I'm thinking maybe I could start being like a smart-shopper for Doctor's offices. You know, see if there is some program out there that will pay me to visit and critique them? "Nice hold music, but the ceiling tiles have water stains that make me nervous." "Um... was it really necessary to put on a tie-in-the-back gown for that exam? Let's rethink things." What do you think?
A week or two later yet another issue presented itself. This one is likely related to pregnancy. We're running it to ground to find out and yet another consult was put in. So far there aren't any lumps or bumps involved with this one. I'm sure hoping to keep it that way.
So what that means is I get to see lots of doctors right now. I mean lots of doctors. More doctors than I have seen in years. What's the current count as of now? 2 GPs, a vascular surgeon, a general surgeon, an ENT surgeon. Those are the ones I have seen or will see in person in the coming weeks. Plus there's at least one referral that hasn't been put all the way through yet. And then there's email contact with Doctor Great at NIH, so far....
It also means I've gotten lots of ultrasounds. Every pregnant woman wants to have lots of ultrasounds, right?! EXCEPT WE WANT TO HAVE THEM BE OF THE BABY!!!! Someone didn't get the memo on that. Going on #4 today.
I'm thinking maybe I could start being like a smart-shopper for Doctor's offices. You know, see if there is some program out there that will pay me to visit and critique them? "Nice hold music, but the ceiling tiles have water stains that make me nervous." "Um... was it really necessary to put on a tie-in-the-back gown for that exam? Let's rethink things." What do you think?
Monday, July 5, 2010
Pathological Googling Sometimes Pays Off
Google. I love Google. I don't know what the world did before Google. Instant information at your fingertips about just about anything--including incredibly rare tumors.
I Googled. Oh boy did I Google. I Googled because it calmed me. Because it was some little thing that I could DO in the midst of a situation over which I was powerless. I Googled to find out about the tumor. I Googled to find out about the big words that I was reading that were about the tumor. I Googled to find other people who had had this same diagnosis. And I Googled to find a doctor.
It became nearly pathological.... Ok more than nearly. But here's the thing. My General doctor didn't know much about what I was dealing with. Surgeon #1 didn't inspire much confidence. It became evident fairly quickly that to make sure I got the care I needed *I* was going to have to become an expert. And so in the last few weeks, I have.
Eventually Googling turned up some names of doctors in other parts of the country who have performed the surgery to take out a Carotid Body Tumor. Then... Then I discovered something really cool.
If you have a weird diagnosis... a rare one... And if you send emails to specialists throughout the country with the name of your super weird and rare diagnosis in the subject line, an amazing thing happens: They answer.
After Googling my brains out trying to find someone who had been there and done that with this kind of surgery, and after learning more about the potential for a genetic mutation, and after wondering if there was a connection between my diagnosis and a tumor my uncle had had on his Adrenal gland some 15 years before, I finally came in contact with folks who knew a bit about paragangliomas. Two separate folks said the same thing: Get thee to NIH in Bethesda. They'll take good care of you. They named a doc there who actually specializes in these rare growths.
And the magical Mr. Google found me his email address.
I wrote the email. I hit send. And not three minutes later I had a reply asking for my phone number so he could talk to me himself.
He called about 10 minutes later and in one 10 minute conversation, I got more information than I had the entire week and a half prior. Also, he immediately offered to take on my case. NIH is a government run clinical research center. If you get accepted into one of their studies all medical procedures--surgeries, tests, whatever are covered. Travel expenses, however, would be our responsibility.
The NIH doctor has the big picture. He knows that younger patients often carry a mutation. He does extensive screening and follow-up.
Basically the chance to be seen by the number one experts--the folks who had seen more of this type of tumor than anyone else in the country--fell into my lap.
So what are we doing with that???
Well right now, we're leaning towards heading there for treatment after baby is born. I have been assured that I will be accepted for the study. The delightfully Polish doctor told me "NIH will accept you by 100%!"
That means quite a haul for surgery: from one coast to another, with a newborn. We have friends and family in the area. That's a perk. It's kind of overwhelming just thinking about the fact that I have something rare enough to consider coast to coast travel for treatment. That is the front-runner for options. We're not closing any other doors though. I have a referral in to see someone in Seattle. If I get a good feeling and a sense of 'big pictureness' there it might still be an option.
It is comforting, though, to know in the end I have an expert... Perhaps even THE expert, looking out for me and interested in making sure I get the best treatment possible.
I don't care which coast we're on when we kick Tomas out for good. I just want him to go!
This then is where Pathological Googling has it's rewards.
I Googled. Oh boy did I Google. I Googled because it calmed me. Because it was some little thing that I could DO in the midst of a situation over which I was powerless. I Googled to find out about the tumor. I Googled to find out about the big words that I was reading that were about the tumor. I Googled to find other people who had had this same diagnosis. And I Googled to find a doctor.
It became nearly pathological.... Ok more than nearly. But here's the thing. My General doctor didn't know much about what I was dealing with. Surgeon #1 didn't inspire much confidence. It became evident fairly quickly that to make sure I got the care I needed *I* was going to have to become an expert. And so in the last few weeks, I have.
Eventually Googling turned up some names of doctors in other parts of the country who have performed the surgery to take out a Carotid Body Tumor. Then... Then I discovered something really cool.
If you have a weird diagnosis... a rare one... And if you send emails to specialists throughout the country with the name of your super weird and rare diagnosis in the subject line, an amazing thing happens: They answer.
After Googling my brains out trying to find someone who had been there and done that with this kind of surgery, and after learning more about the potential for a genetic mutation, and after wondering if there was a connection between my diagnosis and a tumor my uncle had had on his Adrenal gland some 15 years before, I finally came in contact with folks who knew a bit about paragangliomas. Two separate folks said the same thing: Get thee to NIH in Bethesda. They'll take good care of you. They named a doc there who actually specializes in these rare growths.
And the magical Mr. Google found me his email address.
I wrote the email. I hit send. And not three minutes later I had a reply asking for my phone number so he could talk to me himself.
He called about 10 minutes later and in one 10 minute conversation, I got more information than I had the entire week and a half prior. Also, he immediately offered to take on my case. NIH is a government run clinical research center. If you get accepted into one of their studies all medical procedures--surgeries, tests, whatever are covered. Travel expenses, however, would be our responsibility.
The NIH doctor has the big picture. He knows that younger patients often carry a mutation. He does extensive screening and follow-up.
Basically the chance to be seen by the number one experts--the folks who had seen more of this type of tumor than anyone else in the country--fell into my lap.
So what are we doing with that???
Well right now, we're leaning towards heading there for treatment after baby is born. I have been assured that I will be accepted for the study. The delightfully Polish doctor told me "NIH will accept you by 100%!"
That means quite a haul for surgery: from one coast to another, with a newborn. We have friends and family in the area. That's a perk. It's kind of overwhelming just thinking about the fact that I have something rare enough to consider coast to coast travel for treatment. That is the front-runner for options. We're not closing any other doors though. I have a referral in to see someone in Seattle. If I get a good feeling and a sense of 'big pictureness' there it might still be an option.
It is comforting, though, to know in the end I have an expert... Perhaps even THE expert, looking out for me and interested in making sure I get the best treatment possible.
I don't care which coast we're on when we kick Tomas out for good. I just want him to go!
This then is where Pathological Googling has it's rewards.
The Grilling of Doctor #1
A few days after we found out about Tomas, we met our first surgeon. The referral was put in and dealt with with lightning speed for military insurance.
In the meantime, I had been Googling like a fiend. I figured if my doctor was using search engines, they'd work for me too. I learned a lot in a very short time. One of the things I learned was that paragangliomas are super rare. And that Carotid Body Tumors/Paragangliomas occur in about every 1-2 out of every 100,000 people.
And then I bought a lottery ticket. Well. No not really. But I really think I should, don't you?
I also learned that it's even rarer for this type of tumor to occur in younger folks and often when it does the chance that it came about because of a genetic mutation is higher, and the rates for malignancy, recurrence, and metastases also increase.
So what did that have to do with seeing the first doctor? Well... I wanted to know I had someone on my team who knew the big picture.
So... I grilled doctor #1. How many of these had he done? (2). What were the outcomes? (Both were doing fine). What kind of follow up do you do? This was the game-changer so it's not parenthetical. Well... Not much. Largely because he'd only done this in older patients. But maybe he would with me since I'm not 60. *gulp*
The good news we learned was this: 1) The tumor is small which means that the scary, freaky complications I'd been reading about for days would be less likely, and 2) We could wait until after baby was born to do the surgery to keep baby safe.
That day I had another ultrasound and an MRI of my head and neck. The MRI was kind of nice. I mean... It was loud as all get out, but I laid in a tube and had nowhere to go and no one to answer to for a half hour while listening to Solid Gold Oldies. I was good with that. I think they should really bill the things as mini-vacations for overstressed Moms. It could really take off!
By the time we got home that evening (after a trip to Famous Daves... Either the baby or Tomas is craving BBQ... I'm not sure which one.), the doctor had called back and confirmed that he thought my initial diagnosis was correct. Also by the time we got home, we had decided that while Dr. #1s bedside manner was nice enough, we wanted at least a second opinion and probably a different surgeon.
In the meantime, I had been Googling like a fiend. I figured if my doctor was using search engines, they'd work for me too. I learned a lot in a very short time. One of the things I learned was that paragangliomas are super rare. And that Carotid Body Tumors/Paragangliomas occur in about every 1-2 out of every 100,000 people.
And then I bought a lottery ticket. Well. No not really. But I really think I should, don't you?
I also learned that it's even rarer for this type of tumor to occur in younger folks and often when it does the chance that it came about because of a genetic mutation is higher, and the rates for malignancy, recurrence, and metastases also increase.
So what did that have to do with seeing the first doctor? Well... I wanted to know I had someone on my team who knew the big picture.
So... I grilled doctor #1. How many of these had he done? (2). What were the outcomes? (Both were doing fine). What kind of follow up do you do? This was the game-changer so it's not parenthetical. Well... Not much. Largely because he'd only done this in older patients. But maybe he would with me since I'm not 60. *gulp*
The good news we learned was this: 1) The tumor is small which means that the scary, freaky complications I'd been reading about for days would be less likely, and 2) We could wait until after baby was born to do the surgery to keep baby safe.
That day I had another ultrasound and an MRI of my head and neck. The MRI was kind of nice. I mean... It was loud as all get out, but I laid in a tube and had nowhere to go and no one to answer to for a half hour while listening to Solid Gold Oldies. I was good with that. I think they should really bill the things as mini-vacations for overstressed Moms. It could really take off!
By the time we got home that evening (after a trip to Famous Daves... Either the baby or Tomas is craving BBQ... I'm not sure which one.), the doctor had called back and confirmed that he thought my initial diagnosis was correct. Also by the time we got home, we had decided that while Dr. #1s bedside manner was nice enough, we wanted at least a second opinion and probably a different surgeon.
Let Me Introduce you to Tomas. My Tumah.
So if you're reading this, you most likely know that I've been diagnosed with a Carotid Body Tumor. Actually, I guess the more appropriate nomenclature is a 'Carotid Body Paraganglioma.' I do like to say paraganglioma quite a lot, but it doesn't go with 'Tomas' as well as 'Tumor' does.
So... What in the heck is that? Basically it's a growth that forms in the bifurcation of the carotid artery. They're generally not malignant, though they can be in some cases, and the chances of that are increased in younger patients (those diagnosed before age 40). The general protocol for treatment is surgery, and it's a delicate surgery because it is, after all, located on the Carotid Artery. Also there are some rather important facial nerves involved in the same general area. They grow slowly, but they do grow and left untreated they can become problematic in a number of ways, but especially if you are the rare, rare bird for whom the mass ends up being malignant.
Soon after I was diagnosed, Andrew said to me in his best Arnold Schwarzenegger voice, "It's not a tumah." To which I replied, "It is a tumah." Then we decided the tumah needed a name. We decided on Tomas (pronounced ToeMOSS). Which is why you are reading a blog about Tomas. And not... somebody(thing) else. (Pierre the Paraganglioma? Hmmm)
So how did I end up writing about Tomas? Or rather, how did I end up with this diagnosis?
I'd really like to know too. ;)
Not long after we found out we were pregnant with baby #3, I discovered a lump on my neck. Now, for years my neck has gotten lumpy and lymph nodey anytime I was feeling sick, so I chalked it up to an infection coming on. The infection never came though. In fact the kids got sick, Andy got sick. I didn't. I mentioned it at my first OB appointment and my doctor said it was weird that I had no other symptoms, but we'd watch it a while and see. It had been there 3 weeks or so at that point. 5 weeks later I had another appointment and the lump was still there and we decided we weren't going to just watch and see anymore.
So I was scheduled for an ultrasound.
Jim the ultrasound guy was super nice, despite my beginning the exam by saying, "I waited so long I was about to give up on you." But Jim the ultrasound guy asked some weird questions. First he asked if I ever felt my pulse in my neck in an unusually strong way. Then he asked me about my Thyroid. By the end of the exam, Jim the ultrasound guy looked a little subdued... And despite the fact that I had dismissed him as being a wet blanket when I asked him at the beginning of the exam if I could peek at baby after all was said and done, he suddenly switched the screen to OB and gave me a peek at the new one. And I cried. Then he told me my Thyroid was weird and assured me someone would get back to me about my other issue soon. He was extra nice. I just thought it was because he could tell I was an overwhelmed pregnant woman.... Turns out it might just have been because he'd seen something he'd never seen on his screen before and people are extra nice before changing the trajectory of a person's near future.
My doctor called 3 days later and said that things were going a different direction than expected. And he said the words "Carotid Body Tumor" for the first time. And lo, Tomas' existence was noted. My doc had never heard of a diagnosis such as this and had certainly never seen one and he began furiously poking the term into doctory search engines while I listened on the other side of the phone. He was going out of town the next day and wanted to get things rolling. But even though he was being super nice by not leaving me hanging in wonderment, I didn't find it even remotely comforting that HE was using search engines.
I got off the phone with my doctor. Called my brilliant sister-in-law. Left an alarming message on my Dad's machine, and promptly left for work.
Where I blubbered all over my clients' parents. Ahhh well.
And that, my friends, is how the existence of Tomas came to be known. And how our adventures with him began.
So... What in the heck is that? Basically it's a growth that forms in the bifurcation of the carotid artery. They're generally not malignant, though they can be in some cases, and the chances of that are increased in younger patients (those diagnosed before age 40). The general protocol for treatment is surgery, and it's a delicate surgery because it is, after all, located on the Carotid Artery. Also there are some rather important facial nerves involved in the same general area. They grow slowly, but they do grow and left untreated they can become problematic in a number of ways, but especially if you are the rare, rare bird for whom the mass ends up being malignant.
Soon after I was diagnosed, Andrew said to me in his best Arnold Schwarzenegger voice, "It's not a tumah." To which I replied, "It is a tumah." Then we decided the tumah needed a name. We decided on Tomas (pronounced ToeMOSS). Which is why you are reading a blog about Tomas. And not... somebody(thing) else. (Pierre the Paraganglioma? Hmmm)
So how did I end up writing about Tomas? Or rather, how did I end up with this diagnosis?
I'd really like to know too. ;)
Not long after we found out we were pregnant with baby #3, I discovered a lump on my neck. Now, for years my neck has gotten lumpy and lymph nodey anytime I was feeling sick, so I chalked it up to an infection coming on. The infection never came though. In fact the kids got sick, Andy got sick. I didn't. I mentioned it at my first OB appointment and my doctor said it was weird that I had no other symptoms, but we'd watch it a while and see. It had been there 3 weeks or so at that point. 5 weeks later I had another appointment and the lump was still there and we decided we weren't going to just watch and see anymore.
So I was scheduled for an ultrasound.
Jim the ultrasound guy was super nice, despite my beginning the exam by saying, "I waited so long I was about to give up on you." But Jim the ultrasound guy asked some weird questions. First he asked if I ever felt my pulse in my neck in an unusually strong way. Then he asked me about my Thyroid. By the end of the exam, Jim the ultrasound guy looked a little subdued... And despite the fact that I had dismissed him as being a wet blanket when I asked him at the beginning of the exam if I could peek at baby after all was said and done, he suddenly switched the screen to OB and gave me a peek at the new one. And I cried. Then he told me my Thyroid was weird and assured me someone would get back to me about my other issue soon. He was extra nice. I just thought it was because he could tell I was an overwhelmed pregnant woman.... Turns out it might just have been because he'd seen something he'd never seen on his screen before and people are extra nice before changing the trajectory of a person's near future.
My doctor called 3 days later and said that things were going a different direction than expected. And he said the words "Carotid Body Tumor" for the first time. And lo, Tomas' existence was noted. My doc had never heard of a diagnosis such as this and had certainly never seen one and he began furiously poking the term into doctory search engines while I listened on the other side of the phone. He was going out of town the next day and wanted to get things rolling. But even though he was being super nice by not leaving me hanging in wonderment, I didn't find it even remotely comforting that HE was using search engines.
I got off the phone with my doctor. Called my brilliant sister-in-law. Left an alarming message on my Dad's machine, and promptly left for work.
Where I blubbered all over my clients' parents. Ahhh well.
And that, my friends, is how the existence of Tomas came to be known. And how our adventures with him began.
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