Days 1 and 2 of testing are over. I finally got to meet the amazing Dr. Pacak today. He's very much a pheo-para celebrity, and totally deserves to be. He reminds me of a benevolent ruler and it makes me smile to see that while he calls the shot and knows the BIG PICTURE he trusts that the details will be taken care of by those who work with him.
The NIH is huge and overwhelming. I feel like I've been lost for two full days, but I've gotten very good at asking people for directions. Maybe by the end of the week they'll stop pulling out new places for me to find and I'll feel oriented. I doubt it though.
We got some preliminary results from some of the tests today, but they were very preliminary. We don't really know what they mean yet. I have a fine needle aspiration scheduled on Thursday for the nodule on my Thyroid that I'm not looking forward to at all and the date of my surgery is apparently fairly 'fluid.' So... who knows when exactly it will happen, but certainly (at least I sure hope so) sometime next week.
Ms. Lainey is very, very fussy in the evenings. Overwhelming testing all day plus fussy baby at night makes for tired Mommy (and Daddy).
We might get a chance to get out and explore a little tomorrow, or we may just rest. Unless something changes I don't have anything scheduled.
I should tell you all what a Goobie-head I looked like in the high-water pants I accidentally picked out to wear for scans. Let's just say that they so didn't work with the shoes and socks I had to wear. Oh well... No metal grommets = made my life easier. So glad nobody from "What Not to Wear" came and tackled me. THAT is one of my biggest fears (and probably with good reason).
Tiggers don't like MRI contrast. It makes me need to sneeze and cough all at once about 30 seconds after it's injected. It wasn't anything major and didn't even interrupt the testing too much, but was interesting nonetheless.
Also hep-locks and needy babies do not good bedfellows make.
That's all I got today... There are more stories, but I'll have to tell them later or in person. I'm just too exhausted right now. Hopefully I'll have more pep in my step (or at least in my blog) here soon. Until then, keep sending up the prayers. They are both felt and needed. So thankful for all of your love.
Tuesday, February 15, 2011
Sunday, February 13, 2011
Day 1 of Grand Adventure: Playing Pac-man and Getting Settled
So... the adventure has already been adventurous!
The flights all went well yesterday. Lainey was a champion flyer. And the airport food we found along the way was actually mostly quite tastey.
On the final descent into D.C, we snaked along the Patomac and were giddy to have an amazing view of the Washington Monument, and Jefferson and Lincoln memorials. That was just a treat.
We'd been set up the day before to have a Taxi come to get us from the airport and bring us to the family lodge even though we were coming a day early. When we landed at 1:25 am, we headed to the baggage claim and looked around for the taxi and driver. But said taxi and driver were no where to be found. Andrew asked a few different Taxi drivers if they were there for us and they all said no. Our flight had come in a little bit late, so I guess we just missed him and perhaps he there was a snag with the cell phone number or a miscommunication about the flight information. Whatever, we didn't have a ride.
So Andy found us a Taxi willing to drive us from the airport to the NIH. The ride was.... interesting. Our driver was apparently feeling the effects of the late hour and he was also apparently a fan of Pac-man, because he seemed to think the dotted line was something to lead him along and not a barrier to stay inside. Also, he nodded off a couple times at red lights. On a more positive note we again got to see the beauty of the monuments at night as he drove through the city.
The driver also wasn't hugely familiar with the medical center and we had quite a time finding a security gate through which we were authorized to enter. We finally arrived at the right one and didn't expect what we found there. Since we're Navy folk we're pretty accustomed to going through security gates, but as soon as the Taxi pulled up and the windows were rolled down we were ordered to get out of the car. No pleasantries, or explanations, just "GET OUT OF THE CAR." Eventually Andy pleaded with them to explain a little better since we were all very tired, and one of the guards softened a bit and let me sit down in the car while the ID situation was taken care of and the car was searched. It was a little unsettling, but I'm sure not representative of the personalities we'll encounter overall. It did make for a memorable entrance!!!
I trust that our driver got out of here ok. I hope so. I'm pretty certain he cut us a deal on the rate which makes up some for the.... somewhat nerve-wracking ordeal of a drive.
Today we mostly have lounged around and rested up in the family lodge which is JUST BEAUTIFUL. The
wonderful, and amazing Shauna stocked us up with some groceries in the kitchen without our even knowing it until we got here so we didn't even have to go out for food.
We'll hit the ground running early tomorrow morning and find out what this is all really about. I'm anxious, very anxious but even though I've done my share of hand-wringing today, I've also been blown away by the blessings that God has provided for us even down to the details of things. We will get through this.
The flights all went well yesterday. Lainey was a champion flyer. And the airport food we found along the way was actually mostly quite tastey.
On the final descent into D.C, we snaked along the Patomac and were giddy to have an amazing view of the Washington Monument, and Jefferson and Lincoln memorials. That was just a treat.
We'd been set up the day before to have a Taxi come to get us from the airport and bring us to the family lodge even though we were coming a day early. When we landed at 1:25 am, we headed to the baggage claim and looked around for the taxi and driver. But said taxi and driver were no where to be found. Andrew asked a few different Taxi drivers if they were there for us and they all said no. Our flight had come in a little bit late, so I guess we just missed him and perhaps he there was a snag with the cell phone number or a miscommunication about the flight information. Whatever, we didn't have a ride.
So Andy found us a Taxi willing to drive us from the airport to the NIH. The ride was.... interesting. Our driver was apparently feeling the effects of the late hour and he was also apparently a fan of Pac-man, because he seemed to think the dotted line was something to lead him along and not a barrier to stay inside. Also, he nodded off a couple times at red lights. On a more positive note we again got to see the beauty of the monuments at night as he drove through the city.
The driver also wasn't hugely familiar with the medical center and we had quite a time finding a security gate through which we were authorized to enter. We finally arrived at the right one and didn't expect what we found there. Since we're Navy folk we're pretty accustomed to going through security gates, but as soon as the Taxi pulled up and the windows were rolled down we were ordered to get out of the car. No pleasantries, or explanations, just "GET OUT OF THE CAR." Eventually Andy pleaded with them to explain a little better since we were all very tired, and one of the guards softened a bit and let me sit down in the car while the ID situation was taken care of and the car was searched. It was a little unsettling, but I'm sure not representative of the personalities we'll encounter overall. It did make for a memorable entrance!!!
I trust that our driver got out of here ok. I hope so. I'm pretty certain he cut us a deal on the rate which makes up some for the.... somewhat nerve-wracking ordeal of a drive.
Today we mostly have lounged around and rested up in the family lodge which is JUST BEAUTIFUL. The
wonderful, and amazing Shauna stocked us up with some groceries in the kitchen without our even knowing it until we got here so we didn't even have to go out for food.
We'll hit the ground running early tomorrow morning and find out what this is all really about. I'm anxious, very anxious but even though I've done my share of hand-wringing today, I've also been blown away by the blessings that God has provided for us even down to the details of things. We will get through this.
Friday, February 11, 2011
Leaving Tomorrow
As I said on Facebook, surgical pain won't be anything compared to being away from Carolyn and Abbie.
NIH came through in more amazing ways today.
I'm so tired I feel it behind my eyes.
I'm so nervous that when I sleep I wake up exhausted.
I'm sure that we're going to the right place and part of me is excited about seeing just what it's all about.
My Uncle Stan and Aunt Mary Ann reminded me that journey requires faith. This feels like a huge leap of faith. I feel confident in our decision, but astounded that I'm flying 3000 miles tomorrow, going to a medical facility I've never laid eyes on, and having a surgery that I never would have dreamed I'd need a year ago.
So... We head out for Tomas' Coming Out Party tomorrow. I'm buckling my seatbelt, leaning hard into God, and hanging on for the ride.
Here we go! *Wheeee*
NIH came through in more amazing ways today.
I'm so tired I feel it behind my eyes.
I'm so nervous that when I sleep I wake up exhausted.
I'm sure that we're going to the right place and part of me is excited about seeing just what it's all about.
My Uncle Stan and Aunt Mary Ann reminded me that journey requires faith. This feels like a huge leap of faith. I feel confident in our decision, but astounded that I'm flying 3000 miles tomorrow, going to a medical facility I've never laid eyes on, and having a surgery that I never would have dreamed I'd need a year ago.
So... We head out for Tomas' Coming Out Party tomorrow. I'm buckling my seatbelt, leaning hard into God, and hanging on for the ride.
Here we go! *Wheeee*
Monday, February 7, 2011
Sobered
A week from now I'll have gotten to NIH, settled in, and gone through my first day of tests and scans. A week from now there will be less 'fear of the unknown.' A week from now I'll have met the amazing people who have really had my back from 3000 miles away this whole time. A week from now a new chapter of the adventure begins. Maybe it will be my only chapter. Maybe this is only the beginning.
As I've done my pathological googling and found other people dealing with tumors of this kind and the fall-out that can happen as a result, I've read the stories of quite a few people who've gone through incredibly difficult journeys. I've found people with the SDHD mutations which cause the tumors to recur and people with SDHB mutations which cause the tumors to metastasize.
One of those people was Laura Becktel. She fought hard and long. She had tumors on her adrenal gland/kidney, in her neck (at a slightly different place than mine), and then metastases to her bones, skull, and liver.
She gave her life in the fight against the cancerous form of this disease today. I am sad and I am sobered to know this. I only knew her through what I read of her story on various websites, but I know she fought courageously and then shared her story and joined with others to fight the rare and mysterious nature of Paragangliomas and Pheochromocytomas. She banded together with other 'rare birds' so that others who came along later wouldn't have to look so hard to find one another and to find resources to get the best treatment possible. It's because of Laura and people like her that I was able to find out about NIH so soon in my journey. It's because of her and others who spoke out and banded together that I found avenues of support from people who've gone through similar diagnoses. From what I read of her story, these support resources and avenues of information were not so readily available for her just a few years ago. I'm so thankful for the impact that she made with the work that she did.
It's scary to see the reality of this disease in such a raw and tragic way just as I am finally about to embark on the part of the journey that will bring us both treatment and more answers about what we're dealing with. I know that her story is not my story. I know not to jump ahead and assume the worst. But it makes me take a deep breath to hear this news, nonetheless.
I don't know what we'll learn after our trip out East. Maybe we'll find out that the likelihood is good that we won't see any other tumors or complications further down the line. Maybe we'll find out that this may well be only the beginning.
Regardless, I hope to go through this with even a fraction of the grace and courage that Laura had as she fought for her own life while battling for the rest of us. I wish comfort for her family and those who loved her.
As I've done my pathological googling and found other people dealing with tumors of this kind and the fall-out that can happen as a result, I've read the stories of quite a few people who've gone through incredibly difficult journeys. I've found people with the SDHD mutations which cause the tumors to recur and people with SDHB mutations which cause the tumors to metastasize.
One of those people was Laura Becktel. She fought hard and long. She had tumors on her adrenal gland/kidney, in her neck (at a slightly different place than mine), and then metastases to her bones, skull, and liver.
She gave her life in the fight against the cancerous form of this disease today. I am sad and I am sobered to know this. I only knew her through what I read of her story on various websites, but I know she fought courageously and then shared her story and joined with others to fight the rare and mysterious nature of Paragangliomas and Pheochromocytomas. She banded together with other 'rare birds' so that others who came along later wouldn't have to look so hard to find one another and to find resources to get the best treatment possible. It's because of Laura and people like her that I was able to find out about NIH so soon in my journey. It's because of her and others who spoke out and banded together that I found avenues of support from people who've gone through similar diagnoses. From what I read of her story, these support resources and avenues of information were not so readily available for her just a few years ago. I'm so thankful for the impact that she made with the work that she did.
It's scary to see the reality of this disease in such a raw and tragic way just as I am finally about to embark on the part of the journey that will bring us both treatment and more answers about what we're dealing with. I know that her story is not my story. I know not to jump ahead and assume the worst. But it makes me take a deep breath to hear this news, nonetheless.
I don't know what we'll learn after our trip out East. Maybe we'll find out that the likelihood is good that we won't see any other tumors or complications further down the line. Maybe we'll find out that this may well be only the beginning.
Regardless, I hope to go through this with even a fraction of the grace and courage that Laura had as she fought for her own life while battling for the rest of us. I wish comfort for her family and those who loved her.
Thursday, February 3, 2011
St. Groundhog
I started this post about how our trip and everything that is (holy cow!) about to happen just felt like it was just looming. It felt like this big, oppressive black thing on the horizon that I was just trudging toward. To be honest, I've had more than a few 'moments' this week. I've stressed about big things and little (expired licenses, defunct computers losing precious photos, surgery, pumping, fear about the details). I've had some pity parties where I wondered when whoever was depressing the 'hard button' on my life would let off and switch over to the 'easy button.' I've been grumpy and moody and it's probably a good thing that my husband's shift change makes him sleep all day because he, I'm sure, wouldn't want to be around the nutty anymore than he already has to.
Then my Illinoisan family and friends got absolutely buried in snow. And I worried for them. And I worried for me because my Daddy and our wonderful Shari are about to head out to be with us and watch the big girls while we're gone and I want them to be safe and get here! And I thought about winter and bleakness and being buried. Ironically all that was going on during Groundhog's Day.
Carolyn came home toting an adorable groundhog craft yesterday. It was a Styrofoam cup colored with grass and dirt colors and a groundhog on a Popsicle stick that poked out of her artistically rendered burrow. Her teacher asked me if anyone had heard what the groundhog saw and I was glad to report that he had not seen his shadow (perhaps he couldn't get out of his burrow to do so with all the snow piled up, but let's not split hairs here!) and that the official word was 'Spring will be here early!' And I laughed it off like I normally do when it comes to silly holidays.
But it all percolated and I thought of everyone who really, really wished for an early spring --especially the lot of you who are buried in the white stuff. I thought about how I'm *not* buried in white stuff, but I have felt a little buried especially by looming things on the horizon. I thought about darkness and light as I am wont to do from time to time when I get all thinkative and ruminate too much.
I considered 'six more weeks of winter,' which isn't so long even if the groundhog is wrong this go-around. I considered Carolyn's birthday and how it would be right after we get back from the surgery. I considered tulips.
I thought of something beautiful: WINTER ENDS.
IT ENDS!
And trials do too.
Tomas WILL MEET HIS END! Soon!!! Yes, things are finally really happening and that is overwhelming and it's a lot to walk through, but it's TWO WEEKS to walk through after 8 months of waiting and preparing and wondering and worrying and then this leg of the journey, at least, will be over.
Admittedly a good chunk of my wondering anxiousness is about what we'll learn while we're out there/when the results are all back. What exactly are the implications for our future? Is this a one-time deal? Do I have a genetic mutation? Is it the one that predisposes things to this being cancerous? Is it one that would suggest that I'll have more of these boogers to contend with? Do I already have another one lurking? And even worse--if those things are true, did I give this to my kids? Or to their kids (a question which flicks through my mind when people say things like, "At least it's YOU going through this and not THEM." And yes I am glad that this time around it's me, and what's more I'm praying that it won't ever have to be them, but if it does I want us to be as armed as possible to find and fight the sucker early and fast).
BUT, this part will be over. I'll never again go to the NIH for a study/treatment "for the first time," even if I do have to go back for one reason or another.
Best of all, at the end of this journey or this leg of it at the very least, I'm coming home and baking a birthday cake for my Carolyn with SIX candles in it. A month after that we'll go revel in the colors of the joyful daffodils and happy tulips. The trees will begin to bud and the rain and gray will give way to sunshine and short-sleeved days. We'll hit the beach more often and I'll dig my toes into some sand.
The springtime always come. Winter is just a season and it comes around more than once, but always, always winter ends. It gives way to flowers and brightness and things that make me want to skip and frolic. I said to a friend who is in the midst of her own dark winter that when I'm in that place I remind myself that I'm in the middle of my own resurrection story. The darkness is real. It feels oppressive and I can't always talk my way out of my feelings (nor should I always do so because I firmly believe that it is ok and vital to call the bad things bad). Even so, Easter comes and light and rebirth of joy.
So maybe scary things are looming. Maybe there is some darkness at this tumor-y time. I know though that on the other side of this deal I'll lift my face to the sunshine and jump in puddles and tiptoe through tulips and bake birthday cakes for big girls and maybe things won't all be well yet, but it will be spring. And Tomas....?
Tomas will have left the building!!!
(Don't let the door hit ya Tumah-boy!)
P.S. Though I AM looking forward to spring and shifting my focus to that time, I reserve the right to still have my 'moments.' ;)
Then my Illinoisan family and friends got absolutely buried in snow. And I worried for them. And I worried for me because my Daddy and our wonderful Shari are about to head out to be with us and watch the big girls while we're gone and I want them to be safe and get here! And I thought about winter and bleakness and being buried. Ironically all that was going on during Groundhog's Day.
Carolyn came home toting an adorable groundhog craft yesterday. It was a Styrofoam cup colored with grass and dirt colors and a groundhog on a Popsicle stick that poked out of her artistically rendered burrow. Her teacher asked me if anyone had heard what the groundhog saw and I was glad to report that he had not seen his shadow (perhaps he couldn't get out of his burrow to do so with all the snow piled up, but let's not split hairs here!) and that the official word was 'Spring will be here early!' And I laughed it off like I normally do when it comes to silly holidays.
But it all percolated and I thought of everyone who really, really wished for an early spring --especially the lot of you who are buried in the white stuff. I thought about how I'm *not* buried in white stuff, but I have felt a little buried especially by looming things on the horizon. I thought about darkness and light as I am wont to do from time to time when I get all thinkative and ruminate too much.
I considered 'six more weeks of winter,' which isn't so long even if the groundhog is wrong this go-around. I considered Carolyn's birthday and how it would be right after we get back from the surgery. I considered tulips.
I thought of something beautiful: WINTER ENDS.
IT ENDS!
And trials do too.
Tomas WILL MEET HIS END! Soon!!! Yes, things are finally really happening and that is overwhelming and it's a lot to walk through, but it's TWO WEEKS to walk through after 8 months of waiting and preparing and wondering and worrying and then this leg of the journey, at least, will be over.
Admittedly a good chunk of my wondering anxiousness is about what we'll learn while we're out there/when the results are all back. What exactly are the implications for our future? Is this a one-time deal? Do I have a genetic mutation? Is it the one that predisposes things to this being cancerous? Is it one that would suggest that I'll have more of these boogers to contend with? Do I already have another one lurking? And even worse--if those things are true, did I give this to my kids? Or to their kids (a question which flicks through my mind when people say things like, "At least it's YOU going through this and not THEM." And yes I am glad that this time around it's me, and what's more I'm praying that it won't ever have to be them, but if it does I want us to be as armed as possible to find and fight the sucker early and fast).
BUT, this part will be over. I'll never again go to the NIH for a study/treatment "for the first time," even if I do have to go back for one reason or another.
Best of all, at the end of this journey or this leg of it at the very least, I'm coming home and baking a birthday cake for my Carolyn with SIX candles in it. A month after that we'll go revel in the colors of the joyful daffodils and happy tulips. The trees will begin to bud and the rain and gray will give way to sunshine and short-sleeved days. We'll hit the beach more often and I'll dig my toes into some sand.
The springtime always come. Winter is just a season and it comes around more than once, but always, always winter ends. It gives way to flowers and brightness and things that make me want to skip and frolic. I said to a friend who is in the midst of her own dark winter that when I'm in that place I remind myself that I'm in the middle of my own resurrection story. The darkness is real. It feels oppressive and I can't always talk my way out of my feelings (nor should I always do so because I firmly believe that it is ok and vital to call the bad things bad). Even so, Easter comes and light and rebirth of joy.
So maybe scary things are looming. Maybe there is some darkness at this tumor-y time. I know though that on the other side of this deal I'll lift my face to the sunshine and jump in puddles and tiptoe through tulips and bake birthday cakes for big girls and maybe things won't all be well yet, but it will be spring. And Tomas....?
Tomas will have left the building!!!
(Don't let the door hit ya Tumah-boy!)
P.S. Though I AM looking forward to spring and shifting my focus to that time, I reserve the right to still have my 'moments.' ;)
Sunday, January 9, 2011
Nervy Nervous
I'm starting to get rather nervous about our upcoming adventure.
Don't get me wrong, I'm looking forward to losing Tomas along the way, but I'm still nervous (now that I think of it, it's kinda like Mom and Dad always trying to get people who came to visit to take a cat with them, and when people refused saying, "You only have to take him half way!" I'm so just taking him out there and leaving him!).
I'm not afraid I'm going to die or anything.
Or maybe I kind of am, but not in a big way. Just in the 'All surgery carries with it inherent risk,' disclaimery kind of way.
(Now my Dad is totally freaking out because I said the 'd' word. Sorry Dad. I promise I won't die. I won't. Really. It's just the disclaimery kind of fear, the flukey kind. You understand, right Dad? )
Ok then.
Where was I? Oh yes... I'm nervous. Becuase I'm going all the way across the country to have kind of a big surgery (although it should only take a few hours... and I could be discharged in just a day or two.... Isn't that amazing?!) But there are all these details to work out and it's so far away and I worry about all kinds of stupid details like where to park.
(Good news--we probably won't have to worry about that one... Just like.... how to navigate using the Metro and Taxis more likely. So that's something, right?)
I'm a Navy Wife so I'm plenty accustomed to 'hurry up and wait,' but it's been... 7 months y'all. 7 months that this has been there just hanging out. And we've talked about it and theorized about how to get rid of it, and now I'm sitting with just over a month left before all that theory becomes reality. Now that's a shift for my paraganglioma AND Paradigm.
Plus, Tomas is growing. My wonderful and amazing doctor who delivered Alaine confirmed it at my 6 week check up. Tomas is fatter. I joined Weight Watchers for the New Year, but I doubt it'll help him any. That's disconcerting. All this time has passed and letting tumors just sit for a long time isn't usually common practice for a reason. He's bigger.
That's disconcerting.
And I'm worried about what we might learn--do I have a genetic mutation? If I do, what does that mean for me? What does that mean for my girls? What does that mean for their kids?
We've got multi-generational worrying going on here people. Seriously.
So... in the face of all the nervy-nervousness, let's offset it a bit. Let's find some fun. What can I look forward to in all this?
1) This is the closest Andrew and I've come to a 'getaway' since our honeymoon. At 7.5 years of marriage I'd say we're overdue. And it *is* for Valentine's Day after all! Sure the scenery will be sterile medical equipment and high-tech imaging machines instead of palm-trees, but we'll make the best of it. Lainey will too.
2) A Plane ride with JUST an infant AND a husband to help will likely feel down-right luxurious.
3) This will be the perfect opportunity for me to really get a lot of use out of the Kindle Andrew got me for Christmas. As long as I don't break it. Again.
4) Potential Sightseeing. I'm sure between bloodtests, and scans, and surgeries there'll be plenty of time for me to tool around. No really. We might at least have a weekend that's relatively free and we just might go see some fun things.
5) I might get to see some wonderful folks from that part of the country! THAT would be fun.
6) I'll get to take a break from the aforementioned Weight Watchers plan during my testing week. Because I'm NOT counting points during the days that I'm not allowed to eat chocolate, or anything containing vanilla, or anything spicey, or any fruit, or anything that tastes remotely better than cardboard. And I'll be doing a few fasting-required tests too. So... see! No points-counting!
7) After all those tests that require me to stand on my head before ingesting anything that might potentially taste good, being able to eat normally again will feel fantastic!
8) Hospital food. The grub at UW was tastey, we'll see what NIH's culinary specialists have to offer (correction: the food at UW was great as long as you were admitted, that is. The discrepencey between the actual patient food and the everyone else food at UW should really be it's own blogpost. And now I'm out in the outer-Mongolia regions of off-topic again, aren't I? this happens when I get nervous).
9) I'll finally get to meet the amazing people who have been taking care of me from afar.
10) I might get to meet other people with tumors as weird as (or weirder even!) mine!
11) Sympathy points on the plane-ride. Not only traveling with an infant, but ALSO traveling to and from a major medical procedure! Maybe I'll get extra peanuts from the flight attendants!!!
12) ANDY will have to get up with the baby in the middle of the night. Especially on the days I'm pumping and dumping. This might actually be a time for me to catch up on some rest.
13) A new experience in which to trust God. This should be #1. It is. Just pretend I put it there to begin with.
14) I'll get to see my folks, and they'll finally get to meet Lainey before we fly out and after we get back. This should be #2. Pretend again.
15) This'll be a great excuse to watch my favorite TV shows on DVD. West Wing, Vicar of Dibley, Bones, The Big Bang. Oh yes. There will be marathoning of great shows.
16) Having stitches in my neck will break me of touching my lumpy spot. Which will be better for my skin in that area.
17) Soon the lump will be gone.
18) I'll get a cool scar. I can perhaps impress small children with it. They like cool scars.
19) Lots of new people to show Alaine off to. Oh she will be the belle of the ball.
20) And let's not forget people--it'll be GREAT blog-fodder.
21) I almost forgot--as mentioned above--likely no worries about where to park!
Alright, alright. See there are plenty of silver-linings and plenty of lemonade. There might even be plenty of silver-lined lemonade, but I might be a little suspicious of drinking it...
And there is, as always, so much to be grateful for. I'm doing my best to choose to see the miracles here.
But even so, the reality is I have moments... and sometimes half-hours when I'm scared, when I'm nervous. I guess I shouldn't project into it so much, but it's just kind of a big thing coming up with a lot of variables. It will all work out fine. I'll be fine. God has it all under control. Whether I end up fine or not that's true, really.
But still. I'm a little nervy nervous and sometimes afraid of the dark even with all I have to look forward to.
Don't get me wrong, I'm looking forward to losing Tomas along the way, but I'm still nervous (now that I think of it, it's kinda like Mom and Dad always trying to get people who came to visit to take a cat with them, and when people refused saying, "You only have to take him half way!" I'm so just taking him out there and leaving him!).
I'm not afraid I'm going to die or anything.
Or maybe I kind of am, but not in a big way. Just in the 'All surgery carries with it inherent risk,' disclaimery kind of way.
(Now my Dad is totally freaking out because I said the 'd' word. Sorry Dad. I promise I won't die. I won't. Really. It's just the disclaimery kind of fear, the flukey kind. You understand, right Dad? )
Ok then.
Where was I? Oh yes... I'm nervous. Becuase I'm going all the way across the country to have kind of a big surgery (although it should only take a few hours... and I could be discharged in just a day or two.... Isn't that amazing?!) But there are all these details to work out and it's so far away and I worry about all kinds of stupid details like where to park.
(Good news--we probably won't have to worry about that one... Just like.... how to navigate using the Metro and Taxis more likely. So that's something, right?)
I'm a Navy Wife so I'm plenty accustomed to 'hurry up and wait,' but it's been... 7 months y'all. 7 months that this has been there just hanging out. And we've talked about it and theorized about how to get rid of it, and now I'm sitting with just over a month left before all that theory becomes reality. Now that's a shift for my paraganglioma AND Paradigm.
Plus, Tomas is growing. My wonderful and amazing doctor who delivered Alaine confirmed it at my 6 week check up. Tomas is fatter. I joined Weight Watchers for the New Year, but I doubt it'll help him any. That's disconcerting. All this time has passed and letting tumors just sit for a long time isn't usually common practice for a reason. He's bigger.
That's disconcerting.
And I'm worried about what we might learn--do I have a genetic mutation? If I do, what does that mean for me? What does that mean for my girls? What does that mean for their kids?
We've got multi-generational worrying going on here people. Seriously.
So... in the face of all the nervy-nervousness, let's offset it a bit. Let's find some fun. What can I look forward to in all this?
1) This is the closest Andrew and I've come to a 'getaway' since our honeymoon. At 7.5 years of marriage I'd say we're overdue. And it *is* for Valentine's Day after all! Sure the scenery will be sterile medical equipment and high-tech imaging machines instead of palm-trees, but we'll make the best of it. Lainey will too.
2) A Plane ride with JUST an infant AND a husband to help will likely feel down-right luxurious.
3) This will be the perfect opportunity for me to really get a lot of use out of the Kindle Andrew got me for Christmas. As long as I don't break it. Again.
4) Potential Sightseeing. I'm sure between bloodtests, and scans, and surgeries there'll be plenty of time for me to tool around. No really. We might at least have a weekend that's relatively free and we just might go see some fun things.
5) I might get to see some wonderful folks from that part of the country! THAT would be fun.
6) I'll get to take a break from the aforementioned Weight Watchers plan during my testing week. Because I'm NOT counting points during the days that I'm not allowed to eat chocolate, or anything containing vanilla, or anything spicey, or any fruit, or anything that tastes remotely better than cardboard. And I'll be doing a few fasting-required tests too. So... see! No points-counting!
7) After all those tests that require me to stand on my head before ingesting anything that might potentially taste good, being able to eat normally again will feel fantastic!
8) Hospital food. The grub at UW was tastey, we'll see what NIH's culinary specialists have to offer (correction: the food at UW was great as long as you were admitted, that is. The discrepencey between the actual patient food and the everyone else food at UW should really be it's own blogpost. And now I'm out in the outer-Mongolia regions of off-topic again, aren't I? this happens when I get nervous).
9) I'll finally get to meet the amazing people who have been taking care of me from afar.
10) I might get to meet other people with tumors as weird as (or weirder even!) mine!
11) Sympathy points on the plane-ride. Not only traveling with an infant, but ALSO traveling to and from a major medical procedure! Maybe I'll get extra peanuts from the flight attendants!!!
12) ANDY will have to get up with the baby in the middle of the night. Especially on the days I'm pumping and dumping. This might actually be a time for me to catch up on some rest.
13) A new experience in which to trust God. This should be #1. It is. Just pretend I put it there to begin with.
14) I'll get to see my folks, and they'll finally get to meet Lainey before we fly out and after we get back. This should be #2. Pretend again.
15) This'll be a great excuse to watch my favorite TV shows on DVD. West Wing, Vicar of Dibley, Bones, The Big Bang. Oh yes. There will be marathoning of great shows.
16) Having stitches in my neck will break me of touching my lumpy spot. Which will be better for my skin in that area.
17) Soon the lump will be gone.
18) I'll get a cool scar. I can perhaps impress small children with it. They like cool scars.
19) Lots of new people to show Alaine off to. Oh she will be the belle of the ball.
20) And let's not forget people--it'll be GREAT blog-fodder.
21) I almost forgot--as mentioned above--likely no worries about where to park!
Alright, alright. See there are plenty of silver-linings and plenty of lemonade. There might even be plenty of silver-lined lemonade, but I might be a little suspicious of drinking it...
And there is, as always, so much to be grateful for. I'm doing my best to choose to see the miracles here.
But even so, the reality is I have moments... and sometimes half-hours when I'm scared, when I'm nervous. I guess I shouldn't project into it so much, but it's just kind of a big thing coming up with a lot of variables. It will all work out fine. I'll be fine. God has it all under control. Whether I end up fine or not that's true, really.
But still. I'm a little nervy nervous and sometimes afraid of the dark even with all I have to look forward to.
Saturday, December 18, 2010
Ah.... Romance! And THE date (a calendar one)
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.
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.
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