I'm sitting in the living room of my amazing friend, Shauna's home. Just breathing.
We've come out of the whirlwind. My first time at NIH is already starting to fade into memory and story. The edges are blurring and the sharp scary places are being covered with a layer of mental flannel.
And I get to be on the other side of it all. I get to be here. I get to stretch my toes out in the sands of the other side of it all. I get to be Val--the mother of three beautiful daughters, the wife of the most amazing man in the world, a fretter, a worrier, and you know what else? A perserverer. A survivor. A seer.
I've been reading One Thousand Gifts by Ann Voskamp and thinking about counting up the grace that God lavishes upon me. I haven't done so with pen and paper this trip, but I have kept running lists in my head. Sometimes I was just going through the motions reminding myself of the bright spots in the midst of the fear and the pain and the hassle and the hard.
I counted Thanks for a husband's hand to hold, and a baby's coo, and a nurse who listened. For Skype dates with my girlies, and hospital gowns that felt substantial, and a sense of humor to keep me grounded. For doctors who reminded me of benevolent monarchs, and surgeons with cool names and gifted hands, and Fellows who don't sleep and patiently answer questions, and the kindness of strangers who are all in it together.
I have sweated both the big and the small stuff these last few months. I've narrowed my vision at times. Plane tickets falling through and Taxi's not arriving and infections not going away just days before surgery and being scolded left and right for daring to have an infant and even worse wanting to feed her left me breathless and afraid. They were small things.
I'll go home and sweat more small things. The girls that I long so much to see right now will exasperate me. There will be details to work out for the next trip back. The weather won't cooperate. And Andy will end up working a crappy shift when he goes back to work.
I will fret and I will stew and at times I will even feel a little sorry for myself.
But how amazing that I get to! How amazing that I get to live this wild and crazy life with such beauty flecked in amongst the hard stuff!
I get to be here. I get to hug this sweet snuggling beauty that is Alaine. I get to squeeze the hand of my husband. It may take a long weary day of travel to get there, but I will get to gather up my big girls and revel in their hugs and their stories and their complete oblivion to the enormity of what happened while Mommy was gone. I get to walk through it all to moments like this when I can see with clarity that all of it--even the small stuff that I sweat in my narrow vision--is gift.
Before we left, while I was stressing over the details for the gazillionth time, Shari told me, "Things have a way of working themselves out and when they don't we find our way through anyway."
A lot of this trip felt like finding our way through anyway, but we made it. I'll go to sleep tomorrow evening in my own bed surrounded by the people who love me most in the world.
This world is dark and it is hard but it is full of such sweetness. I know it's cliche to reflect like this. I know that it just seems so predictable at a time like this, but the fact of the matter is, it's so freaking true.
I'll go back to sweating the small stuff soon. Maybe even in the next hour or so. But for now I'm so blessed to really see that even THAT is something that I get to do.
Friday, February 25, 2011
Thursday, February 24, 2011
Ding Dong Tomas Is Gone
Tomas is gone! He's gone!!!
In his place is an incision a little over an inch long and some steri-strips and well... a little bit of pain. But that will pass.
What to write about the experience? I don't even know. I found out the night before the procedure that I had a UTI and was put on another antibiotic (After the one the week before following the ear drum rupture). That wigged me out, but didn't end up being such a big deal once we found an antibiotic that was breast-feeding compatible and that I wasn't allergic to.
The same nurse who checked me in checked me out and she was a trip. She kind of had a "It's not like I'm your NURSE or anything--Do it yourself!" attitude. I seriously think she meant to be warm and nurturing, but it just didn't quite work for her. Luckily, she was with me for the parts of the experience that I felt the best and most independent for and it worked out. That meant she made me laugh instead of making me cry.
My three nurses the day of the surgery were absolutely awesome and amazing. One of them, Wilma, became my hero when she told me about all the conflicting and confusing messages she was given by medical professionals when she went through breast cancer with a new baby. She so got it in a way that most people can't and she took SUCH good care of me. I needed a little mothering that day and permission to take it slow and easy and she gave me both. I am certain that God arranged it so that I would have her on my team at just that moment.
The surgery was successful and I'm recovering extremely well which makes me feel like it's strange to tell you that a lot of it felt just really traumatic. They were much more restrictive about Andy and Alaine being with me than I expected and that was hard. We did make that work in the end and skipping ICU and going straight to my regular room AND being released super early made that part of it more manageable. NIH is super conservative about breastfeeding mothers and that was hard. Coming out of anesthesia was hard. I felt like I was trapped in a sea of kelp and as romantic and Sea Ottery as that sounds I found it all just scary and painful and nausea-inducing. Thank God THAT was temporary.
My voice is raspy and gravelly and I have to work to get my words out. I want to be cooey and silly with my baby, and I sound like a scary halloween voice-over. I'm favoring the right side of my neck so I kind off walk with a crooked face and hunched back and I know I look like a deranged woman. The duet of raspy scary voice and crooked headedness I'm quite certain makes me scary to young children.
To check my nerve function and to make sure I wasn't having a stroke I got to do a lot of silly things. I've never stuck my tongue out at so many different doctors so many different times. And I'm happy to report that I still have the famous Val shoulder shrug going on.
My amazing, amazing surgeon and I had more embarrassing moments. Every time the man walked in the room I was in some form of undress. The first time he came in I was pumping milk. He came in to check on me and I think to do rounds as a couple other docs were with him. He opened the door and there I sat milking myself like I was Bessy the Cow. All I could think to do was whimper, "Please, please come back later!" And he graciously complied. Then all I could think about the rest of the day was how I'd yelled at my world-class surgeon. I finally got to talk to him yesterday fully clothed--though I was just finishing nursing that time even. Regardless he did an amazing job and is an amazing doctor. I can't overstate that. My incision is small. I don't even have stitches--just steri-strips. My pain is minimal and, for the most part, my nerve function seems to be good.
Dr. Pacak called me today here in the lodge since he'd missed me at the hospital. HE is a delight as well. I just can't talk to him and not feel cared about.
So I'm on the other side. Tomas is gone. I'm recovering well. I feel confident and strong a good part of the time. I'm finding recovery to be frustrating though as I'll feel so good one moment and so awful the next. Emotionally I go from feeling relieved and happy to just wanting to bawl. I think the enormity of it all is finally hitting and for the first time I really just feel broken.
We'll come back for follow-up in six weeks. Just a quick trip then. Genetic testing results won't be back until at least then and that's the piece of the puzzle that we really need. I really think I'm probably dealing with a genetic mutation. Maybe not, but I just have a feeling. Anyway... we'll deal with that when it's not just conjecture I guess.
For now I'm just going to keep recovering and celebrate that Tomas has left the building (well... he's still over in the NIH clinical center being divied up and studied for research purposes, but I'm done with him at least!).
Oh and I got my cool Lab Rat T-shirt. :)
In his place is an incision a little over an inch long and some steri-strips and well... a little bit of pain. But that will pass.
What to write about the experience? I don't even know. I found out the night before the procedure that I had a UTI and was put on another antibiotic (After the one the week before following the ear drum rupture). That wigged me out, but didn't end up being such a big deal once we found an antibiotic that was breast-feeding compatible and that I wasn't allergic to.
The same nurse who checked me in checked me out and she was a trip. She kind of had a "It's not like I'm your NURSE or anything--Do it yourself!" attitude. I seriously think she meant to be warm and nurturing, but it just didn't quite work for her. Luckily, she was with me for the parts of the experience that I felt the best and most independent for and it worked out. That meant she made me laugh instead of making me cry.
My three nurses the day of the surgery were absolutely awesome and amazing. One of them, Wilma, became my hero when she told me about all the conflicting and confusing messages she was given by medical professionals when she went through breast cancer with a new baby. She so got it in a way that most people can't and she took SUCH good care of me. I needed a little mothering that day and permission to take it slow and easy and she gave me both. I am certain that God arranged it so that I would have her on my team at just that moment.
The surgery was successful and I'm recovering extremely well which makes me feel like it's strange to tell you that a lot of it felt just really traumatic. They were much more restrictive about Andy and Alaine being with me than I expected and that was hard. We did make that work in the end and skipping ICU and going straight to my regular room AND being released super early made that part of it more manageable. NIH is super conservative about breastfeeding mothers and that was hard. Coming out of anesthesia was hard. I felt like I was trapped in a sea of kelp and as romantic and Sea Ottery as that sounds I found it all just scary and painful and nausea-inducing. Thank God THAT was temporary.
My voice is raspy and gravelly and I have to work to get my words out. I want to be cooey and silly with my baby, and I sound like a scary halloween voice-over. I'm favoring the right side of my neck so I kind off walk with a crooked face and hunched back and I know I look like a deranged woman. The duet of raspy scary voice and crooked headedness I'm quite certain makes me scary to young children.
To check my nerve function and to make sure I wasn't having a stroke I got to do a lot of silly things. I've never stuck my tongue out at so many different doctors so many different times. And I'm happy to report that I still have the famous Val shoulder shrug going on.
My amazing, amazing surgeon and I had more embarrassing moments. Every time the man walked in the room I was in some form of undress. The first time he came in I was pumping milk. He came in to check on me and I think to do rounds as a couple other docs were with him. He opened the door and there I sat milking myself like I was Bessy the Cow. All I could think to do was whimper, "Please, please come back later!" And he graciously complied. Then all I could think about the rest of the day was how I'd yelled at my world-class surgeon. I finally got to talk to him yesterday fully clothed--though I was just finishing nursing that time even. Regardless he did an amazing job and is an amazing doctor. I can't overstate that. My incision is small. I don't even have stitches--just steri-strips. My pain is minimal and, for the most part, my nerve function seems to be good.
Dr. Pacak called me today here in the lodge since he'd missed me at the hospital. HE is a delight as well. I just can't talk to him and not feel cared about.
So I'm on the other side. Tomas is gone. I'm recovering well. I feel confident and strong a good part of the time. I'm finding recovery to be frustrating though as I'll feel so good one moment and so awful the next. Emotionally I go from feeling relieved and happy to just wanting to bawl. I think the enormity of it all is finally hitting and for the first time I really just feel broken.
We'll come back for follow-up in six weeks. Just a quick trip then. Genetic testing results won't be back until at least then and that's the piece of the puzzle that we really need. I really think I'm probably dealing with a genetic mutation. Maybe not, but I just have a feeling. Anyway... we'll deal with that when it's not just conjecture I guess.
For now I'm just going to keep recovering and celebrate that Tomas has left the building (well... he's still over in the NIH clinical center being divied up and studied for research purposes, but I'm done with him at least!).
Oh and I got my cool Lab Rat T-shirt. :)
Friday, February 18, 2011
Just call me Twitchy the Rat
I cannot believe the week is over. I simply can't. It felt like it never would be. It felt like one big maze with no cheese at the end.
Speaking of mazes....
There are these shirts in the gift shop that say, "NIH" and have cute little lab rats on them... I'm so making Andy get me one when I need a pick-me-up this week, and I think I will wear it on the plane ride home as an explanation of the weird post-op neck I'll be carrying around while Andy carries all the luggage. So anyway, these shirts made me realize, that yes... *I* am the metaphorical lab rat.
So I was thinking of my role as a lab rat and finally it hit me--THAT is why I've been SO FREAKING LOST ALL WEEK LONG!!! It's part of the research that they don't tell you about. They keep you completely disoriented and finding obscure parts of the hospital all week long. Like a RAT in a MAZE. How did it take me so long to catch on to this?!!! I am a lab rat. But today... I got some cheese.
The tests are over. My CT scan was cancelled today which means that really, my testing schedule was super light this week. I ended up only having 2 MRIs, a PET scan, and a neck ultrasound. I also had countless labs a fine needle aspiration and a trip across the street to the Naval Hospital for a ruptured ear drum thanks to my constantly impacted ears and the plane ride here. So... it wasn't a total piece of cake.
Fantastic news of the day: We got the lab results form the fine needle aspiration and THAT bump at least is just a regular old nodule. NO 'suspicious cells.' It'll need surveillance, but I get to keep all of my Thyroid and the only thing we'll have to deal with Tuesday is Tomas.
In other news I'm Vitamin D Deficient. Just like the rest of the state of Washington.
I met with my surgeon today and I really, really like him. I also like that his first name is Electron. Yes really. I guess his father was an electrical engineer or something. So THAT means that from here on out I can say that Tomas was "Electronically removed." Get it? Heeheehee. He started out by asking me if I understood why the tumor needed to be removed and I rattled off, "Because it's a tumor and it will grow. Because it could compromise important nerves. Because depending on whether or not it is connected to a genetic mutation/where the cards fall it could be metastatic and in that case we'd want it out quick." He acted impressed, but looked at me kind of funny and I totally missed the fact that he was joking when he said, "Ok then. I guess you can also tell me the risks involved with the surgery." I wasn't as clear on those, but ratteld off what I knew anyway, and he interupted me and clued me in on the joke part. Luckily he forgave me for being a know-it-all. Between that and me totally missing the fact that he'd reached out to shake my hand just as I'd gone to fasten the flap on my nursing bra, it's a wonder that I didn't stay beet red the whole time. That he could put me at ease despite my faux pas was impressive. ;)
We also had an anesthesia consult where they outlined the procedure for the anesthesia and gave me a better idea of what to expect next week. It's a little overwhelming honestly.
I'll be admitted Monday. I guess I'll have quite a few labs and pre-oppy things going on that day. They'll come get me early Tuesday morning because I'm the first surgery on the schedule starting bright and early at 8 a.m. The surgery should last 2-3 hours. And they're going to paint my chest, neck, and part of my face orange with antisepticy stuff. Andy promised to take pictures (If he does, I'll smack him).
It was a gorgeous day here today. 70 degrees and sunny. We took a walk around the campus here and sat in a courtyard enjoying the breeze for a while. This weekend we hope to catch up with some friends and visit D.C.
A Lainey update: In the time that we've been here I've gone from saying that she's "2 and a half months old," to "She'll be three months old next Friday." AND she's started meaningfully reaching for things. I love it.
So by this time next week, Lainey WILL be 3 months old, we'll be ready to be discharged, I'll have a wicked looking bandage on my neck, and Tomas will be divied up and given to different doctors for research purposes. What a week it shall be.
P.S. I was saving the blog Title, "Do these Scans Make My Tumor Look Big??" all week long and never got to use it.... *sigh* What a waste!
Speaking of mazes....
There are these shirts in the gift shop that say, "NIH" and have cute little lab rats on them... I'm so making Andy get me one when I need a pick-me-up this week, and I think I will wear it on the plane ride home as an explanation of the weird post-op neck I'll be carrying around while Andy carries all the luggage. So anyway, these shirts made me realize, that yes... *I* am the metaphorical lab rat.
So I was thinking of my role as a lab rat and finally it hit me--THAT is why I've been SO FREAKING LOST ALL WEEK LONG!!! It's part of the research that they don't tell you about. They keep you completely disoriented and finding obscure parts of the hospital all week long. Like a RAT in a MAZE. How did it take me so long to catch on to this?!!! I am a lab rat. But today... I got some cheese.
The tests are over. My CT scan was cancelled today which means that really, my testing schedule was super light this week. I ended up only having 2 MRIs, a PET scan, and a neck ultrasound. I also had countless labs a fine needle aspiration and a trip across the street to the Naval Hospital for a ruptured ear drum thanks to my constantly impacted ears and the plane ride here. So... it wasn't a total piece of cake.
Fantastic news of the day: We got the lab results form the fine needle aspiration and THAT bump at least is just a regular old nodule. NO 'suspicious cells.' It'll need surveillance, but I get to keep all of my Thyroid and the only thing we'll have to deal with Tuesday is Tomas.
In other news I'm Vitamin D Deficient. Just like the rest of the state of Washington.
I met with my surgeon today and I really, really like him. I also like that his first name is Electron. Yes really. I guess his father was an electrical engineer or something. So THAT means that from here on out I can say that Tomas was "Electronically removed." Get it? Heeheehee. He started out by asking me if I understood why the tumor needed to be removed and I rattled off, "Because it's a tumor and it will grow. Because it could compromise important nerves. Because depending on whether or not it is connected to a genetic mutation/where the cards fall it could be metastatic and in that case we'd want it out quick." He acted impressed, but looked at me kind of funny and I totally missed the fact that he was joking when he said, "Ok then. I guess you can also tell me the risks involved with the surgery." I wasn't as clear on those, but ratteld off what I knew anyway, and he interupted me and clued me in on the joke part. Luckily he forgave me for being a know-it-all. Between that and me totally missing the fact that he'd reached out to shake my hand just as I'd gone to fasten the flap on my nursing bra, it's a wonder that I didn't stay beet red the whole time. That he could put me at ease despite my faux pas was impressive. ;)
We also had an anesthesia consult where they outlined the procedure for the anesthesia and gave me a better idea of what to expect next week. It's a little overwhelming honestly.
I'll be admitted Monday. I guess I'll have quite a few labs and pre-oppy things going on that day. They'll come get me early Tuesday morning because I'm the first surgery on the schedule starting bright and early at 8 a.m. The surgery should last 2-3 hours. And they're going to paint my chest, neck, and part of my face orange with antisepticy stuff. Andy promised to take pictures (If he does, I'll smack him).
It was a gorgeous day here today. 70 degrees and sunny. We took a walk around the campus here and sat in a courtyard enjoying the breeze for a while. This weekend we hope to catch up with some friends and visit D.C.
A Lainey update: In the time that we've been here I've gone from saying that she's "2 and a half months old," to "She'll be three months old next Friday." AND she's started meaningfully reaching for things. I love it.
So by this time next week, Lainey WILL be 3 months old, we'll be ready to be discharged, I'll have a wicked looking bandage on my neck, and Tomas will be divied up and given to different doctors for research purposes. What a week it shall be.
P.S. I was saving the blog Title, "Do these Scans Make My Tumor Look Big??" all week long and never got to use it.... *sigh* What a waste!
Thursday, February 17, 2011
Thursday Update
Fine needle aspiration today on the Thyroid nodule (or "N'duule' as my endocrine Fellow says it) today. I'd classify the experience as somewhere between a piece of cake and a big pain in the neck. I also had an EKG which was honestly the easiest thing I've done all week. Tomorrow I'll have a CT scan and a consult with surgery to find out the details of the when/whys/hows of surgery as well as a meeting with anesthesia to see if they want to do any Alpha or Beta Blockers to keep any possibility of hypertensive crisis at bay.
I'm being admitted as an inpatient a little earlier than I expected and that's thrown me for a bit of a loop.
Andy gave blood today and they give you really good Blood-letting gifts here: A little insulated lunchbox, and a bottle of water, and a chip clip, and a pen, and MILANO COOKIES!!! He snuck a package out for me because that's how much he loves me. I love him because he's the kind of guy who sees that they're in need of A+ blood and he says, "Where's the blood bank?" Well... I love him because I just do, but that's one of the things I love about him.
One of the things that we learned earlier in the week is that Tomas really has gotten fat. He's almost doubled in size. We need to get that booger out of there if you ask me.
Honestly, I've had several moments of just wanting to go home and pretend that none of this is happening and go back to life as normal. This has been really overwhelming and honestly harder than I expected at times. But in the long run I know I'm getting the very best care possible.
My favorite things so far about the whole experience have been the sense of community that exists among the patients here and the incredible diversity of people. It's been a while since I've been in a population this diverse and I love the richness of it. On the first point at the lodge where we're staying there is a community kitchen which is the only place that we're allowed to eat. And while that is incredibly irritating when I just want to eat my Oreos and Milk upstairs in my room watching Bones it also makes for great chances for folks to sit and talk and swap stories. I've met several other people with weird tumors like mine. And THAT brings instant camaraderie, I gotta tell you. (You can tell the pheo-para patients. They're the ones carrying around containers of their own urine. Oh. Sorry. That might be oversharing, but you'd laugh if you were one of us.).
Bones is on and I have to Skype with my girls so I'm going to wrap this up. But those are my thoughts today.
I'm being admitted as an inpatient a little earlier than I expected and that's thrown me for a bit of a loop.
Andy gave blood today and they give you really good Blood-letting gifts here: A little insulated lunchbox, and a bottle of water, and a chip clip, and a pen, and MILANO COOKIES!!! He snuck a package out for me because that's how much he loves me. I love him because he's the kind of guy who sees that they're in need of A+ blood and he says, "Where's the blood bank?" Well... I love him because I just do, but that's one of the things I love about him.
One of the things that we learned earlier in the week is that Tomas really has gotten fat. He's almost doubled in size. We need to get that booger out of there if you ask me.
Honestly, I've had several moments of just wanting to go home and pretend that none of this is happening and go back to life as normal. This has been really overwhelming and honestly harder than I expected at times. But in the long run I know I'm getting the very best care possible.
My favorite things so far about the whole experience have been the sense of community that exists among the patients here and the incredible diversity of people. It's been a while since I've been in a population this diverse and I love the richness of it. On the first point at the lodge where we're staying there is a community kitchen which is the only place that we're allowed to eat. And while that is incredibly irritating when I just want to eat my Oreos and Milk upstairs in my room watching Bones it also makes for great chances for folks to sit and talk and swap stories. I've met several other people with weird tumors like mine. And THAT brings instant camaraderie, I gotta tell you. (You can tell the pheo-para patients. They're the ones carrying around containers of their own urine. Oh. Sorry. That might be oversharing, but you'd laugh if you were one of us.).
Bones is on and I have to Skype with my girls so I'm going to wrap this up. But those are my thoughts today.
Tuesday, February 15, 2011
The Ragamuffins Demand to Know...
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.
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.
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.' ;)
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