--Referral in for new OB. Likely hospital I deliver at will be 1 hour and 45 minutes away.
--Talk of scheduled induction because of distance from hospital.
--Talk of scheduled C-section because of extraordinarily small chance of tumor secreting hormones and a hypertensive crisis happening.
(Neither are options with which I'm particularly thrilled. If this is what is needed to get baby here safely though, we'll go with it. I'm just tired of Tomas getting to call all the shots and change all the game plans. I KNOW that if Mom and baby come through labor and delivery safely that's all that matters. But I'm tired of having my expectations thwarted and my plans tweaked and retweaked and tweaked again because of a thing in my neck that I didn't invite.)
--Not so comforting, "We're expecting everything to be straight-forward with your delivery, but just in case we need you at a hospital equipped with an ICU," discussion. Ok. Fine.
--Cold which seems to want to develop into sinus infection or bronchitis, keeps me from sleeping well at night. Makes me feel like crap during the day too. At least it's not as bad as it was over the weekend.
--Rough couple of Mommy days with kiddos pushing boundaries and practicing their howling skills (and not the howling skills needed for Halloween).
Ok. Fine. None of it is a big deal. None of it is huge.... But all of it is wearying.
I'm feeling a bit discouraged to tell the truth.
This too shall pass and I'll put on my big girl panties and deal with all of it. Because... well: what other choice do I have?
But right now, in the thick of it, I'm tired, and I don't feel well, and the little things of life seem out of control, and the big things of life seem even more out of control. And I'm just feeling a little discouraged about it all.
"O God, Thy Sea is so big and my boat is so small," so goes the prayer.
And I'll add what my good friend Piglet says, "It's a little anxious to be a very small animal entirely surrounded by water."
Wednesday, October 13, 2010
Thursday, October 7, 2010
A roller-coastery week and why I KNOW we made the right choice
It's been quite a week.
I have a cold or a virus of some sort for one thing. I haven't been sleeping well for another. That makes the head space of Val a difficult thing to navigate.
We had the fantastic news (mentioned below in an earlier post) from NIH this week that encouraged me immensely. After that I didn't expect to be thrown for any sort of loop at my OB appointment on Wednesday. After all, I had a game plan and I was on top of everything.
But there was this other bump that I'd been stressing over. The one on my belly. I presume it is this bump and it's odd location that makes people exclaim, "Oh My, You're just HUGE!!!!" upon seeing me these days--which believe me is a great ego booster for a girl, especially when those same people try to convince me I'm having twins or that my due date is off by two months.
And that bump, as I mentioned yesterday, it turns out is most likely a hernia. And my doctor thinks that most likely that hernia will need to be dealt with surgically post baby arrival. And that news... That news did not please me any.
I looked at Andy after sobbing hysterically in the Goobermobile for a few minutes after the appointment and said, "I can take the news of a Carotid Paraganglioma and go off to work. Here I am crying over a hernia?"
But really, first of all, hernias sound like something that only hairy, large men with names like Bif and large biceps should get--at least in my head. And second of all...
Um... Have you been paying attention to what's going on ALREADY after this sweet little girl makes her appearance in our lives? Things will be quite full enough thank you and I'm not really in the mood to 'squeeze in just one more tiny surgery' no matter how 'routine' it may be.
So there was that.
And then, my doctor mentioned that the anesthesiologist wanted to see me. I've given birth at this very Naval hospital two other times before this pregnancy and not once has an anesthesiologist wanted to talk to me. In fact, since my labors happen mainly within the 'it doesn't really count as REAL labor according to the intake nurses' window of being dilated to 2 cms for 6-8 (painful, contraction-filled) hours and then going from hearing 'you're never going to have this baby at this rate, woman, deal with it,' from the nurses to 'Holy cow it's time RIGHT NOW!!! Somebody put on the Catcher's Gear!" in the course of a few minutes, I've never even had time for an epidural.
But this time an anesthesiologist consult was requested. So I asked why and I was told that it's because I have a weird thing in my neck and they wanted to talk to me about what that might mean with anesthesia.
I was shuffled around on this particular consultation two days in a row. In the meantime I talked to the amazing people on my team at NIH to find out what my anesthesiologists DID need to know. That boiled down to one thing really: It is really, really, really, really, really extremely unlikely that this Para (or another one that we don't know about) would secrete hormones and spike my BP especially given my catecholamine/metanepherine levels being normal and my blood pressure being a little on the low side even with all the crazy that's happened lately. BUT it's not unheard of. Sometimes the stress of labor triggers an otherwise 'silent' para into action and when that happens a hypertensive crisis could happen. So... There was just that one little thing they needed to know, really.
After being led through a maze to find the anesthesiologist's office at the Naval Hospital today (which was... strangely in the middle of the dental wing???), and after waiting for him for 15 minutes in a hospital that was mostly deserted because of meetings, and after speaking to 3 different people wondering where he was and then waiting on him to come shuffling in, I finally got to sit down and talk to the guy. He was worried about blood flow and about my airway, which are valid concerns for a gentleman of his profession. When I used the word 'paraganglioma' he said, "Do you have documentation of this diagnosis?" And I said, "Um... Yeah." He yelled at me for not having a specialist following my case more closely and I told him that no specialist wanted me until after my baby was born. And then I brought up the issues that my folks at NIH had indicated were most valid to address. He grilled me on my cat/met levels and noted my low and stable blood pressure so far and made a 'what is with this weirdo patient worrying about things that aren't going to happen?' facial expression that I'm coming to know quite well. Then he said "If you ended up having a hypertensive crisis we could give you drugs to make you stable and transport you to another hospital more equipped for those things, but I think you'll be ok delivering here." Translation: In the (admittedly extremely unlikely, but not unheard of) event that the stuff hit the fan... I'd be toast. And this guy didn't really care.
So I came home. And I cried. And I sent an email to NIH.
And NIH called back straight away and said, "You know... You really need to deliver at another hospital," and I blubbered something about how they probably couldn't refer me out because I haven't been SEEN by someone who would recommend it given my diagnosis... And the wonderful nurse who has begun calling me 'honey-bunny' from all of the conversations we've had in a way that doesn't even really annoy me, said, "WHO DO I NEED TO TALK TO?" And I cried. And felt better. Because SOMEONE has my back.
I have really been hating being a rarity lately. I hate that when I talk to a doctor here in this state--even the super-specialists at places like UW--I am thought to be a hypochondriac zebra-chaser. I hate that within about ten minutes of talking to some of the doctors I've encountered that I can tell that they are not clear with the terminology. For instance a "Carotid Body Tumor, (which is actually a misnomer) IS a paraganglioma. And a Paraganglioma IS very similar to a Pheochromacytoma. It's the same thing, but located outside of the adrenal gland. I don't WANT to be the expert. I know very well that I haven't gone to med school. But because of that fact most of them blow off any information that I give them because after all 'they're the ones making the big bucks.' It's enough to make a girl feel completely, and totally alone with a diagnosis that is treatable but serious and has the potential to be very serious not only to me, but possibly to my children also. depending on what we find out about the genetic nature of the disease.
And that is why I am so INCREDIBLY THANKFUL for NIH and for the communication that they have been so free with and for their answering my questions and NOW being willing to talk to whoever needs to be talked to to make sure that until I come to THEM that I am seen by the best people possible.
So what's that mean on the news front?
It means that... Well, I have a hernia too. It means that there is a good possibility that I will not be delivering at this hospital. It means that we have about 8 weeks to figure out where I'm going to give birth and it means that I may be saying goodbye to the only doctor in this part of the country who has taken me seriously and advocated for me and not treated me like a zebra chaser: The Family Practice Doc. who has been following my OB care.
It means there may be a battle for a referral with TriCare, but I have faith that my person at NIH will get the right information to the right people to get me to the right place
But hopefully, ultimately it means that all will be well for the part of this deal that is supposed to be joyous and that is supposed to be about the arrival of the sweet little person growing and kicking and wriggling within me as we speak. If that part of the puzzle can be put in and put at rest, we can focus on that for the next few weeks and get into the joy part of it all before heading to NIH and dealing with the tumor part of it all.
I'm still a coldy, tired, and emotionally frazzled girl. But I AM going to be ok.
I have a cold or a virus of some sort for one thing. I haven't been sleeping well for another. That makes the head space of Val a difficult thing to navigate.
We had the fantastic news (mentioned below in an earlier post) from NIH this week that encouraged me immensely. After that I didn't expect to be thrown for any sort of loop at my OB appointment on Wednesday. After all, I had a game plan and I was on top of everything.
But there was this other bump that I'd been stressing over. The one on my belly. I presume it is this bump and it's odd location that makes people exclaim, "Oh My, You're just HUGE!!!!" upon seeing me these days--which believe me is a great ego booster for a girl, especially when those same people try to convince me I'm having twins or that my due date is off by two months.
And that bump, as I mentioned yesterday, it turns out is most likely a hernia. And my doctor thinks that most likely that hernia will need to be dealt with surgically post baby arrival. And that news... That news did not please me any.
I looked at Andy after sobbing hysterically in the Goobermobile for a few minutes after the appointment and said, "I can take the news of a Carotid Paraganglioma and go off to work. Here I am crying over a hernia?"
But really, first of all, hernias sound like something that only hairy, large men with names like Bif and large biceps should get--at least in my head. And second of all...
Um... Have you been paying attention to what's going on ALREADY after this sweet little girl makes her appearance in our lives? Things will be quite full enough thank you and I'm not really in the mood to 'squeeze in just one more tiny surgery' no matter how 'routine' it may be.
So there was that.
And then, my doctor mentioned that the anesthesiologist wanted to see me. I've given birth at this very Naval hospital two other times before this pregnancy and not once has an anesthesiologist wanted to talk to me. In fact, since my labors happen mainly within the 'it doesn't really count as REAL labor according to the intake nurses' window of being dilated to 2 cms for 6-8 (painful, contraction-filled) hours and then going from hearing 'you're never going to have this baby at this rate, woman, deal with it,' from the nurses to 'Holy cow it's time RIGHT NOW!!! Somebody put on the Catcher's Gear!" in the course of a few minutes, I've never even had time for an epidural.
But this time an anesthesiologist consult was requested. So I asked why and I was told that it's because I have a weird thing in my neck and they wanted to talk to me about what that might mean with anesthesia.
I was shuffled around on this particular consultation two days in a row. In the meantime I talked to the amazing people on my team at NIH to find out what my anesthesiologists DID need to know. That boiled down to one thing really: It is really, really, really, really, really extremely unlikely that this Para (or another one that we don't know about) would secrete hormones and spike my BP especially given my catecholamine/metanepherine levels being normal and my blood pressure being a little on the low side even with all the crazy that's happened lately. BUT it's not unheard of. Sometimes the stress of labor triggers an otherwise 'silent' para into action and when that happens a hypertensive crisis could happen. So... There was just that one little thing they needed to know, really.
After being led through a maze to find the anesthesiologist's office at the Naval Hospital today (which was... strangely in the middle of the dental wing???), and after waiting for him for 15 minutes in a hospital that was mostly deserted because of meetings, and after speaking to 3 different people wondering where he was and then waiting on him to come shuffling in, I finally got to sit down and talk to the guy. He was worried about blood flow and about my airway, which are valid concerns for a gentleman of his profession. When I used the word 'paraganglioma' he said, "Do you have documentation of this diagnosis?" And I said, "Um... Yeah." He yelled at me for not having a specialist following my case more closely and I told him that no specialist wanted me until after my baby was born. And then I brought up the issues that my folks at NIH had indicated were most valid to address. He grilled me on my cat/met levels and noted my low and stable blood pressure so far and made a 'what is with this weirdo patient worrying about things that aren't going to happen?' facial expression that I'm coming to know quite well. Then he said "If you ended up having a hypertensive crisis we could give you drugs to make you stable and transport you to another hospital more equipped for those things, but I think you'll be ok delivering here." Translation: In the (admittedly extremely unlikely, but not unheard of) event that the stuff hit the fan... I'd be toast. And this guy didn't really care.
So I came home. And I cried. And I sent an email to NIH.
And NIH called back straight away and said, "You know... You really need to deliver at another hospital," and I blubbered something about how they probably couldn't refer me out because I haven't been SEEN by someone who would recommend it given my diagnosis... And the wonderful nurse who has begun calling me 'honey-bunny' from all of the conversations we've had in a way that doesn't even really annoy me, said, "WHO DO I NEED TO TALK TO?" And I cried. And felt better. Because SOMEONE has my back.
I have really been hating being a rarity lately. I hate that when I talk to a doctor here in this state--even the super-specialists at places like UW--I am thought to be a hypochondriac zebra-chaser. I hate that within about ten minutes of talking to some of the doctors I've encountered that I can tell that they are not clear with the terminology. For instance a "Carotid Body Tumor, (which is actually a misnomer) IS a paraganglioma. And a Paraganglioma IS very similar to a Pheochromacytoma. It's the same thing, but located outside of the adrenal gland. I don't WANT to be the expert. I know very well that I haven't gone to med school. But because of that fact most of them blow off any information that I give them because after all 'they're the ones making the big bucks.' It's enough to make a girl feel completely, and totally alone with a diagnosis that is treatable but serious and has the potential to be very serious not only to me, but possibly to my children also. depending on what we find out about the genetic nature of the disease.
And that is why I am so INCREDIBLY THANKFUL for NIH and for the communication that they have been so free with and for their answering my questions and NOW being willing to talk to whoever needs to be talked to to make sure that until I come to THEM that I am seen by the best people possible.
So what's that mean on the news front?
It means that... Well, I have a hernia too. It means that there is a good possibility that I will not be delivering at this hospital. It means that we have about 8 weeks to figure out where I'm going to give birth and it means that I may be saying goodbye to the only doctor in this part of the country who has taken me seriously and advocated for me and not treated me like a zebra chaser: The Family Practice Doc. who has been following my OB care.
It means there may be a battle for a referral with TriCare, but I have faith that my person at NIH will get the right information to the right people to get me to the right place
But hopefully, ultimately it means that all will be well for the part of this deal that is supposed to be joyous and that is supposed to be about the arrival of the sweet little person growing and kicking and wriggling within me as we speak. If that part of the puzzle can be put in and put at rest, we can focus on that for the next few weeks and get into the joy part of it all before heading to NIH and dealing with the tumor part of it all.
I'm still a coldy, tired, and emotionally frazzled girl. But I AM going to be ok.
Wednesday, October 6, 2010
Seriously?!
And NOW I have a hernia which will need surgery after baby too.
I'm naming it Hermione.
And I'm so totally done with weird lumps and issues--To WHOM IT MIGHT CONCERN.
I'm naming it Hermione.
And I'm so totally done with weird lumps and issues--To WHOM IT MIGHT CONCERN.
Tuesday, October 5, 2010
Swirling Vortex of Chaos Meet Game Plan
So it's not like we have a lot going on right now or anything.
We're just... Having a baby.
And navigating Carotid Paraganglioma-ville and other 'lumpy issues'... Which includes surgery on the other side of the country when most of our familial support system (who are being SO awesome and traveling to our side of the country to help us) are located in the middle of the country.
And then, you know... there's the *little* detail of Andrew's Shore Duty coming to an end and making the decision to stay Navy.... which means that we're preparing for Sea Duty and awayness a lot.
And well, you know... Babies don't come with game plans.
And Paragangliomas... Well their game plans take a while to develop when you are fighting for information and education and the best treatment possible.
And the Navy.... HA. There's NEVER a game plan with the Navy. At least not one that gets translated to the service members and families in question in a timely manner.
That's not overwhelming or anything. Really. Especially not with crazy pregnancy hormones and the beginning chapters of sleep deprivation (from umpteen trips to the bathroom, and heartburn at 2 am, and the mental dedication it takes just to turn over at night, you understand).
Ok, I've been freaking out just a little bit.
Today NIH called and I again had a really encouraging and empowering conversation.
And I got a glimpse of the game plan with some fantastic news: It's not going to be TWO trips to NIH. It will only be one. Scans the first week, surgery the second (maybe a little later, but still pretty quickly), and then we come home until follow-up time.
That sounds so much easier than two trips and coordinating two times away from my sweet big girls. That makes things feel like they're falling into place. And like this game plan might just be workable.
Tomas--get ready, your eviction notice is likely coming in January. We'll celebrate the beginning of my 3rd decade by getting rid of you and finding out if we need to be on the lookout for any of your relatives down the line.
A girl with a plan can look at the swirling vortex of chaos that has been frustrating me as of late with more confidence. Heck. I think I'll even level it with the famous Val stare-down. Not even Tomas is immune to that.
We're just... Having a baby.
And navigating Carotid Paraganglioma-ville and other 'lumpy issues'... Which includes surgery on the other side of the country when most of our familial support system (who are being SO awesome and traveling to our side of the country to help us) are located in the middle of the country.
And then, you know... there's the *little* detail of Andrew's Shore Duty coming to an end and making the decision to stay Navy.... which means that we're preparing for Sea Duty and awayness a lot.
And well, you know... Babies don't come with game plans.
And Paragangliomas... Well their game plans take a while to develop when you are fighting for information and education and the best treatment possible.
And the Navy.... HA. There's NEVER a game plan with the Navy. At least not one that gets translated to the service members and families in question in a timely manner.
That's not overwhelming or anything. Really. Especially not with crazy pregnancy hormones and the beginning chapters of sleep deprivation (from umpteen trips to the bathroom, and heartburn at 2 am, and the mental dedication it takes just to turn over at night, you understand).
Ok, I've been freaking out just a little bit.
Today NIH called and I again had a really encouraging and empowering conversation.
And I got a glimpse of the game plan with some fantastic news: It's not going to be TWO trips to NIH. It will only be one. Scans the first week, surgery the second (maybe a little later, but still pretty quickly), and then we come home until follow-up time.
That sounds so much easier than two trips and coordinating two times away from my sweet big girls. That makes things feel like they're falling into place. And like this game plan might just be workable.
Tomas--get ready, your eviction notice is likely coming in January. We'll celebrate the beginning of my 3rd decade by getting rid of you and finding out if we need to be on the lookout for any of your relatives down the line.
A girl with a plan can look at the swirling vortex of chaos that has been frustrating me as of late with more confidence. Heck. I think I'll even level it with the famous Val stare-down. Not even Tomas is immune to that.
Saturday, September 18, 2010
Oh Yeah...
This post is in a couple of places. For the record.
When I went to see my doctor 7 months after Baboo came along to see if what I was feeling might be PPD, I kind of spilled my guts.
So much had happened in such a short time in the months and years previous to that day I felt like I didn’t have any sense of emotional equilibrium to compare with to I was feeling in that moment.
He assured me I did indeed have Postpartum Depression and I wasn’t particularly enthused about that. So I cried a little bit and freaked out a little bit. And tried to figure out a way that maybe it wasn’t PPD.
Then he said, “You’ve been through a lot. There’s no question on that. There have been a lot of ups and downs that you have gotten through in a very short time. And in the not too distant future, you are going to look back on this and say, ‘Hey. I got through that too.’”
I’ve said that very thing almost every time I’ve talked to another Mom going through PPD.
Since I got this crazy diagnosis I’ve been surviving. And sometimes I’ve felt good and ok. And sometimes I’ve felt scared stupid. Sometimes I’ve just felt pregnant.
It wasn’t until tonight that I thought about what my doctor said in the context of what’s going on right now. “In the not too distant future I’m going to look back and say, Hey. I got through that too.”
When we walk through trials and we come out on the other side, for a little bit we look at life from a new perspective. We feel empowered and like we really can conquer anything. I got through that horrific year when I lost my Mom, and my husband deployed, and my infant and I went to more funerals than anyone should in a single year and we lived in two different states. I got through PPD. I even remember how empowered I felt after I gave birth to my girls--especially with Carolyn. I couldn’t believe my body had made this perfect little person and sustained her life and pushed her out and I felt like I could truly do anything and face anything.
Eventually though that feeling fades and the humdrum stuff starts looking daunting again and it’s a struggle to get through a day with a five-year old and a three-year old who are both displaying quite an attitude while your feet are swelling and your gait is starting to resemble that of a penguin (not that that has happened lately or anything). And then the big stuff, that you thought in the face of the other stuff you’ve gone through wouldn’t look so intimidating looks just as mountainous. And you forget that you once thought, “I got through that other gunky stuff… I can get through anything.”
But tonight I’m remembering. I’m remembering where I’ve come from and using that lens to look at where I’m going. I am a Navy wife. And seriously–we can do just about anything. I went through a year five years ago that I once thought would send me to an underground bunker and came out on the other side. I’ve beaten PPD and done what I could to speak into other’s lives that they can too. I’ve traveled cross country with infants and toddlers. And I’ve figured out how to clean both Karo syrup and Honey off of my kitchen floor (and two year olds).
As for this tumor and the surgery and doing it all with a newborn and two other busy, amazing little girls. Well. I’m gonna get through that too.
Besides, the reason that I have been able to come to the other side of those other things isn’t because I’m so awesome and wonderful. It’s because of my God who is awesome and wonderful. And His goodness has carried me through. His faithfulness has buoyed me. His strength and His spirit have guided me. And, “When God is for us, who can be against us?”
In His strength and power I can wake up every day until baby gets here and lay my worries down and focus on her arrival. In His strength and power I can face the travel and tests and surgery that will help me to get rid of this thing in my neck. In his mercy and grace I will find blessings along the way and comfort and encouragement on the days when the mountains just look way too freaking big. And in his goodness and grace I’ll come to the other side and look back and say, “I got through that too. He got me through that too.”
When I went to see my doctor 7 months after Baboo came along to see if what I was feeling might be PPD, I kind of spilled my guts.
So much had happened in such a short time in the months and years previous to that day I felt like I didn’t have any sense of emotional equilibrium to compare with to I was feeling in that moment.
He assured me I did indeed have Postpartum Depression and I wasn’t particularly enthused about that. So I cried a little bit and freaked out a little bit. And tried to figure out a way that maybe it wasn’t PPD.
Then he said, “You’ve been through a lot. There’s no question on that. There have been a lot of ups and downs that you have gotten through in a very short time. And in the not too distant future, you are going to look back on this and say, ‘Hey. I got through that too.’”
I’ve said that very thing almost every time I’ve talked to another Mom going through PPD.
Since I got this crazy diagnosis I’ve been surviving. And sometimes I’ve felt good and ok. And sometimes I’ve felt scared stupid. Sometimes I’ve just felt pregnant.
It wasn’t until tonight that I thought about what my doctor said in the context of what’s going on right now. “In the not too distant future I’m going to look back and say, Hey. I got through that too.”
When we walk through trials and we come out on the other side, for a little bit we look at life from a new perspective. We feel empowered and like we really can conquer anything. I got through that horrific year when I lost my Mom, and my husband deployed, and my infant and I went to more funerals than anyone should in a single year and we lived in two different states. I got through PPD. I even remember how empowered I felt after I gave birth to my girls--especially with Carolyn. I couldn’t believe my body had made this perfect little person and sustained her life and pushed her out and I felt like I could truly do anything and face anything.
Eventually though that feeling fades and the humdrum stuff starts looking daunting again and it’s a struggle to get through a day with a five-year old and a three-year old who are both displaying quite an attitude while your feet are swelling and your gait is starting to resemble that of a penguin (not that that has happened lately or anything). And then the big stuff, that you thought in the face of the other stuff you’ve gone through wouldn’t look so intimidating looks just as mountainous. And you forget that you once thought, “I got through that other gunky stuff… I can get through anything.”
But tonight I’m remembering. I’m remembering where I’ve come from and using that lens to look at where I’m going. I am a Navy wife. And seriously–we can do just about anything. I went through a year five years ago that I once thought would send me to an underground bunker and came out on the other side. I’ve beaten PPD and done what I could to speak into other’s lives that they can too. I’ve traveled cross country with infants and toddlers. And I’ve figured out how to clean both Karo syrup and Honey off of my kitchen floor (and two year olds).
As for this tumor and the surgery and doing it all with a newborn and two other busy, amazing little girls. Well. I’m gonna get through that too.
Besides, the reason that I have been able to come to the other side of those other things isn’t because I’m so awesome and wonderful. It’s because of my God who is awesome and wonderful. And His goodness has carried me through. His faithfulness has buoyed me. His strength and His spirit have guided me. And, “When God is for us, who can be against us?”
In His strength and power I can wake up every day until baby gets here and lay my worries down and focus on her arrival. In His strength and power I can face the travel and tests and surgery that will help me to get rid of this thing in my neck. In his mercy and grace I will find blessings along the way and comfort and encouragement on the days when the mountains just look way too freaking big. And in his goodness and grace I’ll come to the other side and look back and say, “I got through that too. He got me through that too.”
Wednesday, September 15, 2010
And The Winner Is:
"Bob, Tell us who the winner is going to be. Will it be the illustrious Dr. Crazy Hair at UW and the McCast we've all grown so fond of or the mysterious 'super-experts' at the National Institute of Health (who better darn well be good if they're expecting us to travel 3000 miles to see them)?"
.....
....
And the winner is......NIH!!!
I'm settling there. It's time to settle. Or else Andrew will kick me in the head from going back and forth and obsessing about every little detail with him each and every night before finally dozing off mid-quandary (when he'd probably rather be doing other things... like... sleeping).
I had a really encouraging conversation this week with the research nurse involved with the Para/Pheo Study at NIH, who I believe does a lot of the coordinating of patients. Within a minute of talking to her I knew this was the way to go.
I am not chasing zebras. She assured me of that immediately It is my belief that while the doctors I have talked to here are excellent and proficient doctors that they aren't maybe as current on some of the more recent research about paragangliomas. A lot of new information has come out even just in the last few years and with a diagnosis as rare as this I think it would be easy for that research to go unnoticed. Do I think that they could have done the surgery just fine? Absolutely. Do I think that I would have had all of my questions answered and/or been set up for follow-up down the line to see what may or may not happen after Tomas takes a hike? No. And I think that within the parameters of TriCare and the referrals process it would have been difficult, maybe not impossible, to find a doctor who knows enough about Paras for me to feel comfortable. This is the way to go. It might not be the 'easy road' logistically, but I think in the end it will allow me to 'rest easier' knowing that I have ALL the information that I can get about my Tumor and what that means for my future.
The travel and the logistics will be difficult. I hope, that in the end, it will be worth it to know that I covered all of my bases. Even if I find out that I DON'T have any need to worry about the 'extra stuff' with gene mutations and recurrence and what not I will feel relieved to hear that from THE experts in this field. AND if I do deal with this on down the line I'll already know where to go to be taken care of from all angles of these cases.
I even found out that with some pumping and dumping there is a good chance that I'll be able to continue to breastfeed and that does this hormonal Mama's (who doesn't know what to do with a baby outside of that option--though I'm no Lactivist to be sure) heart good.
On top of all that, my experience so far is that these people go the extra mile to make sure that a patient is informed and reassured about care there. This amazing woman called me on her cell phone while driving to a conference in another state. The ensuing conversation was a little choppy and humorous because the state of Pennsylvania's cell phone signal is apparently spotty at best, but still... That's service.
There will be an initial visit after I make contact with NIH for the scans and full work up to make sure that this is ALL we're dealing with, to find out about the gene stuff, and to get a good solid look at Tomas really for the first time since my scan options have been limited because of the pregnancy. While we're there we'll talk to the surgical team and find out the whens and hows and why are we doing that's of the surgery which will occur sometime after the testing.
Having this piece settled is a relief. I've been agonizing over 'the right decision' for so long. I think it's time to hitch my wagon to this and make it 'the plan' if only to hold onto my sanity.
(Since this entry isn't at all funny, I will simply add here that when I found out that C's Kindergarten teacher's name was "Ms. Thomas" I immediately thought, "Oh Great! She has the same name as my tumor!!!!")
For those of you who pray, I do have one thing for you to especially pray for now that we have this settled: I want to look forward to my new little miracle's arrival. I want to think all things pink and soft and tulle-y and anticipate her little nails and ears and eyebrows and coos and smiles without immediately jumping to "After the baby comes, I have surgery," in my brain. To be sure, once she is here she will be cherished. To be sure she is already especially cherished--maybe even more so because of the x-factors that landed in this pregnancy. It has been hard for me though to let myself feel excited without feeling trepidatious either about the tumor and the treatment and all that will follow or about another thing coming out of left field that could be harmful for me or baby. Please pray that I could experience the joy of expecting this little girl (who for now is called Beanetta Fae Hillary Beula R. because of the many people who love her with us ;)). And you know... also pray that all would go well with this surgery and there would be no surprises and that I could, ya know... Be around for years and years and years with my gorgeous trio of R. princesses.
.....
....
And the winner is......NIH!!!
I'm settling there. It's time to settle. Or else Andrew will kick me in the head from going back and forth and obsessing about every little detail with him each and every night before finally dozing off mid-quandary (when he'd probably rather be doing other things... like... sleeping).
I had a really encouraging conversation this week with the research nurse involved with the Para/Pheo Study at NIH, who I believe does a lot of the coordinating of patients. Within a minute of talking to her I knew this was the way to go.
I am not chasing zebras. She assured me of that immediately It is my belief that while the doctors I have talked to here are excellent and proficient doctors that they aren't maybe as current on some of the more recent research about paragangliomas. A lot of new information has come out even just in the last few years and with a diagnosis as rare as this I think it would be easy for that research to go unnoticed. Do I think that they could have done the surgery just fine? Absolutely. Do I think that I would have had all of my questions answered and/or been set up for follow-up down the line to see what may or may not happen after Tomas takes a hike? No. And I think that within the parameters of TriCare and the referrals process it would have been difficult, maybe not impossible, to find a doctor who knows enough about Paras for me to feel comfortable. This is the way to go. It might not be the 'easy road' logistically, but I think in the end it will allow me to 'rest easier' knowing that I have ALL the information that I can get about my Tumor and what that means for my future.
The travel and the logistics will be difficult. I hope, that in the end, it will be worth it to know that I covered all of my bases. Even if I find out that I DON'T have any need to worry about the 'extra stuff' with gene mutations and recurrence and what not I will feel relieved to hear that from THE experts in this field. AND if I do deal with this on down the line I'll already know where to go to be taken care of from all angles of these cases.
I even found out that with some pumping and dumping there is a good chance that I'll be able to continue to breastfeed and that does this hormonal Mama's (who doesn't know what to do with a baby outside of that option--though I'm no Lactivist to be sure) heart good.
On top of all that, my experience so far is that these people go the extra mile to make sure that a patient is informed and reassured about care there. This amazing woman called me on her cell phone while driving to a conference in another state. The ensuing conversation was a little choppy and humorous because the state of Pennsylvania's cell phone signal is apparently spotty at best, but still... That's service.
There will be an initial visit after I make contact with NIH for the scans and full work up to make sure that this is ALL we're dealing with, to find out about the gene stuff, and to get a good solid look at Tomas really for the first time since my scan options have been limited because of the pregnancy. While we're there we'll talk to the surgical team and find out the whens and hows and why are we doing that's of the surgery which will occur sometime after the testing.
Having this piece settled is a relief. I've been agonizing over 'the right decision' for so long. I think it's time to hitch my wagon to this and make it 'the plan' if only to hold onto my sanity.
(Since this entry isn't at all funny, I will simply add here that when I found out that C's Kindergarten teacher's name was "Ms. Thomas" I immediately thought, "Oh Great! She has the same name as my tumor!!!!")
For those of you who pray, I do have one thing for you to especially pray for now that we have this settled: I want to look forward to my new little miracle's arrival. I want to think all things pink and soft and tulle-y and anticipate her little nails and ears and eyebrows and coos and smiles without immediately jumping to "After the baby comes, I have surgery," in my brain. To be sure, once she is here she will be cherished. To be sure she is already especially cherished--maybe even more so because of the x-factors that landed in this pregnancy. It has been hard for me though to let myself feel excited without feeling trepidatious either about the tumor and the treatment and all that will follow or about another thing coming out of left field that could be harmful for me or baby. Please pray that I could experience the joy of expecting this little girl (who for now is called Beanetta Fae Hillary Beula R. because of the many people who love her with us ;)). And you know... also pray that all would go well with this surgery and there would be no surprises and that I could, ya know... Be around for years and years and years with my gorgeous trio of R. princesses.
Monday, September 6, 2010
It's All in My Head
To go to NIH, or not to go to NIH: THAT is the question.
For those who are wondering there is no new news on Tomas. He's still just hanging out on my neck. Following my day in Grey's Anatomy I went on a Walk to Emmaus for four days and basked in the reality of God's love *happy sigh* and following my Walk to Emmaus, we packed up and left town. We took a vacation to IL. And *I* took a vacation from Tomas. It was lovely. I didn't make Doctor's appointments. I didn't go to Doctor's appointments. I didn't spend hours on Google. I floated in the pool and spent time with people I loved and it was great.
Now we're home and I need to get back on track. And I have. I had a regular old OB appointment this week--How am I already just days away from my third trimester?! I contacted NIH again with more questions. And, after I figure out what this school schedule looks like I'll figure out a time to go get the MRI that has been ordered for a while done.
In the meantime... It's all been a mind game. I have prayed. I have ruminated. I have wondered. I have worried. And I have tried to figure out--NIH or not?
I've Googled, of course. That's led to some interesting information. The whole 'cancerous or not' issue has been clarified. Paragangliomas are apparently such boogers that you don't know if they are cancerous until they start acting like cancer, which can take years. So with most tumors you take them out and a pathologists looks at them and says, "Yep this one is cancer," or "Nope, this one isn't." But with Paras they all look the same. So unless they metastasize initially or down the line they're classified as 'benign.' Interesting, eh? Then if 2 or 3 or even 10 or 15 years down the line if you end up with a metastasis, then.... THEN it's classified as 'cancerous.'
And..... THIS is good news: Carotid Body Tumors really are generally benign.
I've also read a bit more about the SDH mutations and their prevalence and what it means if you have different ones. And I find that I still have lots of questions revolving around that issue and how it may or may not pertain to me and I find that if it does... I want more than just the cut it out and go thinking to prevail.
So I've collected all this information. And honestly the information makes me want an experty expert.
BUT...
I still feel like I'm chasing zebras. And that makes me feel foolish. And I don't like to feel foolish. So I worry and stew about my foolishness. Like it matters what Dr. #1 thinks who has only seen 5 of these in older people or what Dr. Crazy Hair thinks who has seen lots more of them but dismisses the possibility of a genetic component despite the vast amount of information I've been able to find just through Dr. Google about the potential for a genetic mutation especially in people diagnosed at younger ages with a para in their heads or necks.
And I think I'm starting to conclude that it doesn't matter what they think. That I am my own expert at this point. And that I do need more answers. Which means: NIH.
But then I come up against this other thing and that is: Going to the other side of the country for treatment is really complicated and scary and expensive. I don't know what it all looks like yet either past, "Call me when you have your baby and we'll schedule your visits." And maybe if I knew more about what it all would look like I could relax, but I don't know what it looks like so I'm left to look at this vastness of "I don't know," and I really don't like that. And maybe I'll end up being in the majority here and not have to ever worry about Tomas or any of his relatives ever in my life and then we'll have spent all that travel time and money and worry over nothing and isn't that silly? And then I go back to thinking I'm chasing Zebras again.
You see the problem.
It's all mental for the moment. It's all speculation and wondering and trying not to make a big deal out of a stupid silly tumor on the one hand (because... say it with me now everybody, "It could really be much worse!") and on the other hand going, "Ohmygosh I have a tumor on my carotid artery and I'm gonna need surgery (maybe on the other side of the country?) and that is really scary."
And THEN. THEN. THEN I go: Hello... Peace that passes all understanding? I need a little bit of you!!!!
And then I calm down. For a while. Because He's got me in the palm of my hand no matter which direction this thing goes. And He is good. And loving. And incredibly FOR me. And I remember the *happy sigh* love I came back to awareness of on my Walk to Emmaus. And I know that He is big enough for me to just rest.
And I get off the crazy train for a little bit.
For those who are wondering there is no new news on Tomas. He's still just hanging out on my neck. Following my day in Grey's Anatomy I went on a Walk to Emmaus for four days and basked in the reality of God's love *happy sigh* and following my Walk to Emmaus, we packed up and left town. We took a vacation to IL. And *I* took a vacation from Tomas. It was lovely. I didn't make Doctor's appointments. I didn't go to Doctor's appointments. I didn't spend hours on Google. I floated in the pool and spent time with people I loved and it was great.
Now we're home and I need to get back on track. And I have. I had a regular old OB appointment this week--How am I already just days away from my third trimester?! I contacted NIH again with more questions. And, after I figure out what this school schedule looks like I'll figure out a time to go get the MRI that has been ordered for a while done.
In the meantime... It's all been a mind game. I have prayed. I have ruminated. I have wondered. I have worried. And I have tried to figure out--NIH or not?
I've Googled, of course. That's led to some interesting information. The whole 'cancerous or not' issue has been clarified. Paragangliomas are apparently such boogers that you don't know if they are cancerous until they start acting like cancer, which can take years. So with most tumors you take them out and a pathologists looks at them and says, "Yep this one is cancer," or "Nope, this one isn't." But with Paras they all look the same. So unless they metastasize initially or down the line they're classified as 'benign.' Interesting, eh? Then if 2 or 3 or even 10 or 15 years down the line if you end up with a metastasis, then.... THEN it's classified as 'cancerous.'
And..... THIS is good news: Carotid Body Tumors really are generally benign.
I've also read a bit more about the SDH mutations and their prevalence and what it means if you have different ones. And I find that I still have lots of questions revolving around that issue and how it may or may not pertain to me and I find that if it does... I want more than just the cut it out and go thinking to prevail.
So I've collected all this information. And honestly the information makes me want an experty expert.
BUT...
I still feel like I'm chasing zebras. And that makes me feel foolish. And I don't like to feel foolish. So I worry and stew about my foolishness. Like it matters what Dr. #1 thinks who has only seen 5 of these in older people or what Dr. Crazy Hair thinks who has seen lots more of them but dismisses the possibility of a genetic component despite the vast amount of information I've been able to find just through Dr. Google about the potential for a genetic mutation especially in people diagnosed at younger ages with a para in their heads or necks.
And I think I'm starting to conclude that it doesn't matter what they think. That I am my own expert at this point. And that I do need more answers. Which means: NIH.
But then I come up against this other thing and that is: Going to the other side of the country for treatment is really complicated and scary and expensive. I don't know what it all looks like yet either past, "Call me when you have your baby and we'll schedule your visits." And maybe if I knew more about what it all would look like I could relax, but I don't know what it looks like so I'm left to look at this vastness of "I don't know," and I really don't like that. And maybe I'll end up being in the majority here and not have to ever worry about Tomas or any of his relatives ever in my life and then we'll have spent all that travel time and money and worry over nothing and isn't that silly? And then I go back to thinking I'm chasing Zebras again.
You see the problem.
It's all mental for the moment. It's all speculation and wondering and trying not to make a big deal out of a stupid silly tumor on the one hand (because... say it with me now everybody, "It could really be much worse!") and on the other hand going, "Ohmygosh I have a tumor on my carotid artery and I'm gonna need surgery (maybe on the other side of the country?) and that is really scary."
And THEN. THEN. THEN I go: Hello... Peace that passes all understanding? I need a little bit of you!!!!
And then I calm down. For a while. Because He's got me in the palm of my hand no matter which direction this thing goes. And He is good. And loving. And incredibly FOR me. And I remember the *happy sigh* love I came back to awareness of on my Walk to Emmaus. And I know that He is big enough for me to just rest.
And I get off the crazy train for a little bit.
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