A year ago Saturday was the day that this whole shebang began. My doctor called on a Friday evening before he left town for a week because he didn't want me to have to wait and wonder while he was gone. He spent at least 30 minutes on the phone with me explaining what a 'carotid body tumor' was..... and doing so by looking it up in Google and Wikipedia himself.
Within a month I'd discovered that people who were diagnosed at a young age often had tumors as a result of a genetic mutation. If you've read here long at all, you know the rest: Genetic mutation = predisposition for growing tumors. Higher likelihood of recurrence, malignancy, or metastasis. For a year I've wanted to know 1) WHY did this happen? 2) Is it going to happen again? 3) Am I going to get cancer? And to help answer all those questions I needed to know do I have a genetic mutation??
One year and two days later, I have an answer to that question.
NO. No, I don't have a genetic mutation. I am not a mutant.
This is good news... Really good news.
And I am shocked. I mean... Knock me over with a feather, this was not what I anticipated at all, shocked.
As soon as I was in contact with the NIH we were talking genetic mutations. It felt like I just fit the profile, but maybe that's just how I read it. The location of the tumor plus my age plus finding out about the nodule on the other side. It just made sense. Plus, I have this dismal family history of cancer, cancer, and more cancer and surely that ties in with it all somehow, right? From the beginning, Karen didn't talk to me so much in terms of whether or not I had a mutation, but which one.
Today I got an email from Karen. One line. "Hi Val. You are negative for any mutations. Karen"
This is good news. It's great news. It is. But I have no idea how to process it. I don't know what to think. I've gone so long trying to figure out which one I had and what that meant that it's actually a lot to process to find out that I DON'T have a mutation.
It also leaves me with a lot of questions. Like: Why did this happen in the first place? And... Does this mean that I WON'T get more tumors or is there still a chance that I will? And.... How do I need to be screened?
It answers a big question, but it doesn't conclusively answer all of the questions.
The great news is that hopefully, hopefully this means that the girls have nothing to worry about. They won't need to be tested and screened. They won't ever have to deal with these tumors or questions or worries or wonders. THAT is fantastic.
I don't know what my deal is. I should be all smiles and excited out of my mind. Instead I just feel.... confused. I'm hoping that as time goes by, the happy will come. I'm sure it will.
Sinking into the happy or not, Andrew brought me flowers today to celebrate. We're going out to eat. I'm going for a walk/jog, getting into the sunshine, and maybe having a squirt gun fight with my girls.
It's been a long, hard year. But there's good news today.
Monday, June 20, 2011
Friday, May 27, 2011
But It's Not Cancer Right???
Abbie had an end of the year school picnic at the park today. She's been in the two day preschool class at the same preschool where Carolyn attended 3 day preschool last year. For that reason there were quite a few Moms there that I had gotten to know from Carolyn's class last year. Being the socially inept little duck that I am I ended up just mainly chatting with a friend of mine from church (who I'm really enjoying getting to know, by the way), but seeing these people made me think of how much has happened since last year. When I finally did speak with one of the Moms that I used to chat with last year she was surprised to find out that I'd had a baby. As I was driving home I thought to myself, "Girl! You don't know the half of what kind of crazy has happened since I last chatted with you!"
In situations like that I don't usually offer up a whole lot of information about Tomas. Or, I guess... I play it by ear depending on the person. Part of the reason is that it's all just so hard to explain. And part of that is because of the 'c' word factor.
The 'C' word factor has kind of followed me around like a rain cloud during this whole experience. And I realized today that I've been reluctant to give myself much grace partly because of the 'C' word factor.
As I've mentioned before paragangliomas are tricky. With many masses you take them out and look them on pathology slides and you know 'cancer' or 'not cancer.' With paras and pheos you don't know unless there is a metastasis somewhere in the body where they don't normally originate. That can happen years or even decades down the line. Most of the information out there broadly categorizes them as 'benign neoplasms.' Most of the time they AREN'T considered cancerous, but basically even with that 'probably not' you still have that whisper in the back of your mind of, "but it could be..." And then you have the different genetic mutations that come into play. Past that, from what I've read and from the stories I've heard it seems like when a hard and fast rule is made about these tumors a case comes along to bust it. So while the cancer issue is considered to be a factor usually only with larger tumors or with certain genetic mutations there are still cases of people with sporadic disease and/or tiny tumors who have metastasis pop up and end up with malignant disease. Because of all of that, some people--even some medical professionals--DO consider them cancer from the get go, but in the form of a 'low grade malignancy,' AND there are a lot of varying opinions. To a point that makes sense to me.
On top of that, even when they aren't cancerous they still need to come out. They still represent a malady in the body. It's still a tumor. They can still compromise systems in the body. They can still wreak havoc. They are still scary.
That totally confuses people: I had a tumor. But the tumor wasn't cancer? What?!
And in that confusion I find a frustrating feeling: Sometimes I almost feel like having a paraganglioma is something akin to having the red headed step child of diseases. Because as a patient you don't fit into anybody's easy little boxes. You don't even fit into doctors' easy boxes How many times have been trying to explain Tomas to someone and their eyes glaze over and they say, "But it's not cancer.... right?"
And in this "right?" I hear a lot of things that aren't necessarily said but may or may not be implied, "So it's not a big deal. So we'll mentally classify you in the 'worrisome but fixable' category of the prayer chain right next to Uncle Stewy's trick knee and cousin Sophia's infected toenail surgery. So you really shouldn't be scared. So you're really not fighting a hard battle. So your feelings are dismissed."
I'm the daughter of a woman who died of lung cancer. Believe me when I tell you I get what a scary deal cancer is. And I'm glad that what I had is probably not cancer.
I still had a tumor. A rare one. Rare enough that I chose to travel to the other side of the country for it's removal. I still lived with something inside of me that shouldn't have been for months. I still agonized about whether or not catecholamines would be secreted when I delivered Alaine. I'm still wondering what will come of the 'nodule' on the other side. I'm still wondering if this is it or will there be more. And I'm still not sure that the 'c' word isn't going to rear it's ugly head.
Some people with pheos or paras that are secretory have to deal with hypertensive crises, cardiovascular "events," high blood pressure, panic attack sympotms and emotional variability due to the release of catecholamines and metanephrines from their tumors. That's not the 'c' word, but you better believe it's pretty darned serious. People with a genetic mutation and a predisposition to growing these tumors have to be vigilant in watching for symptoms like that even when their original tumors weren't secretory. And then there's the scariness of having something growing inside your body without presenting with obvious symptoms. Tomas was one of the non-secretory tumors with no symptoms other than a bump.
In short, it might not be cancer, but it's still scary.
I think about American Cancer Society events and t-shirts that say 'survivor' and I wonder if on the other side of those 'But it's not cancer right?' questions is the implication that I haven't survived something major. I'm sure no one intends for that benign (see how afraid of the 'c' word we are with the language that we use) little question to spur so many wonderances in me. No one intends to make me feel like my tumor wasn't something to be concerned with. And really the issue here is me and my own brain and feelings about the issue. Which leads me to the next paragraph...
Worst of all is the 'C' word factor and myself.... Because I taunt myself with it. "Yeah it was scary, but it wasn't cancer, so stop it. Yeah, you got through it, but it wasn't cancer so it's not like it's that big of a deal." "It's not like you needed chemo or radiation..." quit stewing about it. I *feel* less deserving of the survivor t-shirt because of the 'c' word factor. Because if it had been the 'C' word.... THAT would have been something to have survived... but it's no big deal to survive a 'benign neoplasm.' And 'Paraganglioma Survivor" is kind of a mouthful.
So I beat myself up and act like I haven't really been through anything. I mentally get frustrated with being classified in the 'needed surgery because of an ingrown toe nail category' by others, but I put myself there constantly. I don't give myself the grace or the space I need to process because always a little part of my brain is saying in a sing-song voice, "But it wasn't cancer." And I expect myself to not have feelings about it all three months after surgery.
This is a weird disease. Everyone who has it feels rare and alone as soon as that first doctor looks at them and says, "I've never seen this before....". When it does swing to the cancer side of things that's absolutely terrifying and even more rare. When it doesn't, at least from my experience... We feel almost guilty for that. It's a twisted kind of survivor guilt, I guess.
But it occurred to me today, I AM a survivor. I am a survivor of a rare disease. I survived a year of fear and anxiety and frustration. I survived a surgery on the other side of the country. I survived the struggle of finding a doctor who knew what I was talking about when I said the word 'paraganglioma.' I survived having a baby in the midst of the what-ifs that Tomas caused. I survived having something so rare that when you encounter someone else who has had it you have a little mental party because even though you don't want anyone to have to go through something like this, it feels so good to NOT be alone in it.
So in answer to the "Right???" implications and feelings I can say this: No, so far it doesn't appear that Tomas was cancer. Just the same, what I went through WAS scary.... It was terrifying. And the implications of having Tomas and the what ifs that are still out there continue to be frightening. More than that though I *am* a survivor. I survived Tomas. I am surviving the wait for my genetic mutation results. And God willing I'll keep surviving what ever else Tomas and his minions may throw at me.
(P.S. No, Still no news on the genetic testing...)
In situations like that I don't usually offer up a whole lot of information about Tomas. Or, I guess... I play it by ear depending on the person. Part of the reason is that it's all just so hard to explain. And part of that is because of the 'c' word factor.
The 'C' word factor has kind of followed me around like a rain cloud during this whole experience. And I realized today that I've been reluctant to give myself much grace partly because of the 'C' word factor.
As I've mentioned before paragangliomas are tricky. With many masses you take them out and look them on pathology slides and you know 'cancer' or 'not cancer.' With paras and pheos you don't know unless there is a metastasis somewhere in the body where they don't normally originate. That can happen years or even decades down the line. Most of the information out there broadly categorizes them as 'benign neoplasms.' Most of the time they AREN'T considered cancerous, but basically even with that 'probably not' you still have that whisper in the back of your mind of, "but it could be..." And then you have the different genetic mutations that come into play. Past that, from what I've read and from the stories I've heard it seems like when a hard and fast rule is made about these tumors a case comes along to bust it. So while the cancer issue is considered to be a factor usually only with larger tumors or with certain genetic mutations there are still cases of people with sporadic disease and/or tiny tumors who have metastasis pop up and end up with malignant disease. Because of all of that, some people--even some medical professionals--DO consider them cancer from the get go, but in the form of a 'low grade malignancy,' AND there are a lot of varying opinions. To a point that makes sense to me.
On top of that, even when they aren't cancerous they still need to come out. They still represent a malady in the body. It's still a tumor. They can still compromise systems in the body. They can still wreak havoc. They are still scary.
That totally confuses people: I had a tumor. But the tumor wasn't cancer? What?!
And in that confusion I find a frustrating feeling: Sometimes I almost feel like having a paraganglioma is something akin to having the red headed step child of diseases. Because as a patient you don't fit into anybody's easy little boxes. You don't even fit into doctors' easy boxes How many times have been trying to explain Tomas to someone and their eyes glaze over and they say, "But it's not cancer.... right?"
And in this "right?" I hear a lot of things that aren't necessarily said but may or may not be implied, "So it's not a big deal. So we'll mentally classify you in the 'worrisome but fixable' category of the prayer chain right next to Uncle Stewy's trick knee and cousin Sophia's infected toenail surgery. So you really shouldn't be scared. So you're really not fighting a hard battle. So your feelings are dismissed."
I'm the daughter of a woman who died of lung cancer. Believe me when I tell you I get what a scary deal cancer is. And I'm glad that what I had is probably not cancer.
I still had a tumor. A rare one. Rare enough that I chose to travel to the other side of the country for it's removal. I still lived with something inside of me that shouldn't have been for months. I still agonized about whether or not catecholamines would be secreted when I delivered Alaine. I'm still wondering what will come of the 'nodule' on the other side. I'm still wondering if this is it or will there be more. And I'm still not sure that the 'c' word isn't going to rear it's ugly head.
Some people with pheos or paras that are secretory have to deal with hypertensive crises, cardiovascular "events," high blood pressure, panic attack sympotms and emotional variability due to the release of catecholamines and metanephrines from their tumors. That's not the 'c' word, but you better believe it's pretty darned serious. People with a genetic mutation and a predisposition to growing these tumors have to be vigilant in watching for symptoms like that even when their original tumors weren't secretory. And then there's the scariness of having something growing inside your body without presenting with obvious symptoms. Tomas was one of the non-secretory tumors with no symptoms other than a bump.
In short, it might not be cancer, but it's still scary.
I think about American Cancer Society events and t-shirts that say 'survivor' and I wonder if on the other side of those 'But it's not cancer right?' questions is the implication that I haven't survived something major. I'm sure no one intends for that benign (see how afraid of the 'c' word we are with the language that we use) little question to spur so many wonderances in me. No one intends to make me feel like my tumor wasn't something to be concerned with. And really the issue here is me and my own brain and feelings about the issue. Which leads me to the next paragraph...
Worst of all is the 'C' word factor and myself.... Because I taunt myself with it. "Yeah it was scary, but it wasn't cancer, so stop it. Yeah, you got through it, but it wasn't cancer so it's not like it's that big of a deal." "It's not like you needed chemo or radiation..." quit stewing about it. I *feel* less deserving of the survivor t-shirt because of the 'c' word factor. Because if it had been the 'C' word.... THAT would have been something to have survived... but it's no big deal to survive a 'benign neoplasm.' And 'Paraganglioma Survivor" is kind of a mouthful.
So I beat myself up and act like I haven't really been through anything. I mentally get frustrated with being classified in the 'needed surgery because of an ingrown toe nail category' by others, but I put myself there constantly. I don't give myself the grace or the space I need to process because always a little part of my brain is saying in a sing-song voice, "But it wasn't cancer." And I expect myself to not have feelings about it all three months after surgery.
This is a weird disease. Everyone who has it feels rare and alone as soon as that first doctor looks at them and says, "I've never seen this before....". When it does swing to the cancer side of things that's absolutely terrifying and even more rare. When it doesn't, at least from my experience... We feel almost guilty for that. It's a twisted kind of survivor guilt, I guess.
But it occurred to me today, I AM a survivor. I am a survivor of a rare disease. I survived a year of fear and anxiety and frustration. I survived a surgery on the other side of the country. I survived the struggle of finding a doctor who knew what I was talking about when I said the word 'paraganglioma.' I survived having a baby in the midst of the what-ifs that Tomas caused. I survived having something so rare that when you encounter someone else who has had it you have a little mental party because even though you don't want anyone to have to go through something like this, it feels so good to NOT be alone in it.
So in answer to the "Right???" implications and feelings I can say this: No, so far it doesn't appear that Tomas was cancer. Just the same, what I went through WAS scary.... It was terrifying. And the implications of having Tomas and the what ifs that are still out there continue to be frightening. More than that though I *am* a survivor. I survived Tomas. I am surviving the wait for my genetic mutation results. And God willing I'll keep surviving what ever else Tomas and his minions may throw at me.
(P.S. No, Still no news on the genetic testing...)
Friday, May 6, 2011
Waiting... Wondering.... Choking on Chicken
We’ve been in waiting mode since getting back from the NIH. Everything has felt quite up in the air. First of all, we were waiting on orders. Where are we going to live? We’re headed back to Sea Duty. What will managing Tomasities look like on Sea Duty? Secondly, we’ve been waiting for the genetic testing results.
I was told that I’d be tested for the SDHD/SDHB mutations only as part of the NIH’s research protocol. I was told that it would take at least two months to get them back.
It’s been two months and three weeks. Not that I’m counting or anything. And it’s not like I wake up every day and wonder if today is the day that I’ll get the call. It’s not like I hold my breath every single time the phone rings and feel both let down and relieved when the caller I.D. doesn’t say, “Health and Human Svcs.” It’s not like I’m sending an email to Karen every week saying, “Are the results in yet?” leading her to put me on her top ten list of pain in the tuckus patients. It’s not like I’m feeling a little nutty about it all.
Really. It’s not.
You don’t believe me, do you?
Last week we got the news that we’d most likely be staying here. Today we got the hard copy orders. So that’s settled. We're gearing up for Sea Duty and with that comes plenty of it's own wonderings and ambiguity, but at least we're not planning a move on top of it all and we know where Andrew will be employed.
So now I just need to know if I have a mutation/which one it is.
What’s the big deal about the mutation you ask? People kind of look at me funny when I say that I'm anxious about it all. Talking about it in terms of letters and mutations seems to remove people from thinking about it as tumors and disease. What's the big deals if a few of my genes are 'misspelled?'
I’m not sure if everyone in Pheo world would completely agree, but from where I’m sitting here it basically feels like I’m waiting to find out which disease I’m being diagnosed with. Or if I have a disease since a small part of me (and it might be the denial part of me) is still holding out hope that this could all just be sporadic.
If I find out that I have the SDHD mutation it will mean that I’m predisposed to paragangliomas and potentially pheochromocytomas. People with the SDHD mutation most often get them in their head and neck, but also sometimes in other parts of the body. I may have an adrenal pheo at some point. There isn’t a straight line progression. It doesn’t always happen the same way. And some people with SDHD, despite the fact that it’s considered low risk for malignant potential (around 10%), do indeed end up having malignant disease. The ‘genetic imprinting’ of SDHD would mean that my girls “most likely” would not develop tumors themselves, but could pass them on to their offspring if they were carriers for the gene. If I have the SDHD gene I will continue to be scanned twice a year and can back that on down the line other tumors will probably grow, though I suppose it could be argued that they might not.
If I find out that I have the SDHB mutation it would still mean that I’m predisposed to paragangliomas/pheos. It will mean that there’s a higher chance of them being functional and/or in the abdomen. It will mean that there is a much higher chance for malignancy (38-83% in carriers of the disease). Again there's no predictor for how or if it would all progress, but we'd know more about what to look for. The genetic crapshoot of SDHB would mean that I could have directly passed on the mutation to the girls. Again, I'd continue to be scanned twice a year and we'll deal with what we find from those scans.
I’ve never in my life hoped more fervently to get a ‘D’ instead of a ‘B’ on a test. I really don't want to have either of them. But the truth is, whichever one I’ve got, we’ll fight it and we’ve got the heavy duty folks on the team already. They’ve got my back and I trust that the procedures they follow will help us to root out these tumors so we can deal with them early and decrease the risk of complications.
I just want to know so I can wrap my mind around it, and so I can stop feeling crazy every time my phone rings.
In the meantime, since I just can’t let life be too boring I went ahead and choked on some chicken and had an emergency endoscopy under general anesthetic Monday evening. That was a typically Roseberrian crazy song and dance complete with an EMT body checking an agitated patient who had gotten in between my husband and our kids, and my being grilled by the surgeon doing the Endo. About the Tomas Surgery for a good 20 minutes. At least I got to chill out with some Valium for a few minutes.
We’re through that though, and things are fine and despite what I’ve written above, I’m not sitting and babysitting the phone and I’m not paralyzed with fear. I’m just anxious to know. Anxious to process it. Anxious to start to settle into what we're dealing with. Do you think anxiousness could make you choke on chicken?
Could be....
Could be....
Wednesday, March 30, 2011
The really Rare Luck I've got
I spent some time today reading through the patient stories at the Pheo Para Troopers website. You should too.
After reading there, my thoughts today are this: Do you have any idea how incredibly lucky I am?! With all of the 'lightning bolt and lottery ticket' odds that I've been hit with so far, I think the biggest 1 in a million happening that I've been blessed with is this: Somehow or another, I got the information I needed at the right times to talk to the right people to get me to the right doctors to get the treatment that I needed right away.
When reading stories like these here and in other places online I've felt, in a typically neurotic Val fashion, inadequate because of the simplicity of my case so far. Inadequate isn't quite the right word. I guess I've felt unworthy of notice or care or of world-class doctors to help me walk through my case. I've felt, somewhat rightly, that held up to what other people have faced, my worries and frustrations and fears have been petty. After all I have "Only a carotid paraganglioma," "Only another nodule." Reading through those stories those onlies are just emphasized for me even more.
I read Matt, Erin, and Tisa's stories today and one of the things they all had in common was going to doctor after doctor after doctor and getting treatment that was good, but that missed something. Those missing links and pieces of the puzzle that weren't picked up on right away, even by doctors who I'm sure were very good, inevitably made these journeys that were already arduous even more difficult.
It's true that I "just" had a carotid paraganglioma removed and that I "just" have a nodule. The stories that are represented here and elsewhere online give me plenty of perspective. What I've been thinking about, though, as I've wondered in the last few days what the future will bring is, what will MY story be? Will these be the only tumors that I deal with? I'm only 30. If I have anywhere near an average life expectancy and this disease progresses in the way that I understand it to do so when there are mutations involved it just seems logical to me that there would be more to deal with, though that may not always be the case. Will there be abdominal paras or Adrenal Pheos? More tumors in my head and neck? What about tumors in other places in my body? If there's more to come, where will they show up? What twists and turns have I not even dreamed of?
What is astounding to me though is how incredibly lucky, or blessed I am to have found Dr. Pacak and his protocol at NIH and been accepted into his study this early in the game. I wasn't thrilled with who the Navy referral docs sent me to in the beginning, but I quickly found my way to better options AND with the advice of a couple people (one of them being a Pheo Para Trooper) and a timid email sent I very quickly had Dr. Pacak in my corner! How incredibly lucky I have been that things have been tweaked here and there just so to get me to the folks who were in the know the first time around. At 30, with all of this really being my first go-around, even if there is more to the story, I have a team of doctors on my side who will be watching like hawks. I'll be working with people who see people like me--and people with much more complicated stories like the Pheo Para Troopers featured in these stories--on a daily basis.
How can I be anything but grateful then?! Forget gloomy!!! I got the one in a million luck of going to some of THE LEADING experts on Paras and Pheos when the adjectives describing my ordeal could still be words like, "Just" and "Only." I haven't seen legions of doctors. While it felt for a while in the beginning, like I was having to explain my situation a million times to people who didn't fully understand, I've been on this journey less than a year and haven't really seen THAT many people.
In light of that, it only makes sense to shift any of my "Why did *I* have to get these rare tumors?" thinking to, "If I had to get these rare tumors how grateful I am that things aligned themselves just so leading me to one of the best teams possible to see me through this!"
One in a million luck, every once in a while, is a really great thing to have. Today, I'm glad I've got it.
Go read these stories. Find out why the Pheo Para Troopers are such a vital and needed organization. It's because of these people and others who are allying against these mysterious illnesses that hopefully more and more people are going to get to have luck like I did and find their way to the doctors and treatment that they need immediately and not half-way into their stories. I'm honored to join the ranks. I can only hope that I can help other people to be as lucky as I have been somewhere down the line.
After reading there, my thoughts today are this: Do you have any idea how incredibly lucky I am?! With all of the 'lightning bolt and lottery ticket' odds that I've been hit with so far, I think the biggest 1 in a million happening that I've been blessed with is this: Somehow or another, I got the information I needed at the right times to talk to the right people to get me to the right doctors to get the treatment that I needed right away.
When reading stories like these here and in other places online I've felt, in a typically neurotic Val fashion, inadequate because of the simplicity of my case so far. Inadequate isn't quite the right word. I guess I've felt unworthy of notice or care or of world-class doctors to help me walk through my case. I've felt, somewhat rightly, that held up to what other people have faced, my worries and frustrations and fears have been petty. After all I have "Only a carotid paraganglioma," "Only another nodule." Reading through those stories those onlies are just emphasized for me even more.
I read Matt, Erin, and Tisa's stories today and one of the things they all had in common was going to doctor after doctor after doctor and getting treatment that was good, but that missed something. Those missing links and pieces of the puzzle that weren't picked up on right away, even by doctors who I'm sure were very good, inevitably made these journeys that were already arduous even more difficult.
It's true that I "just" had a carotid paraganglioma removed and that I "just" have a nodule. The stories that are represented here and elsewhere online give me plenty of perspective. What I've been thinking about, though, as I've wondered in the last few days what the future will bring is, what will MY story be? Will these be the only tumors that I deal with? I'm only 30. If I have anywhere near an average life expectancy and this disease progresses in the way that I understand it to do so when there are mutations involved it just seems logical to me that there would be more to deal with, though that may not always be the case. Will there be abdominal paras or Adrenal Pheos? More tumors in my head and neck? What about tumors in other places in my body? If there's more to come, where will they show up? What twists and turns have I not even dreamed of?
What is astounding to me though is how incredibly lucky, or blessed I am to have found Dr. Pacak and his protocol at NIH and been accepted into his study this early in the game. I wasn't thrilled with who the Navy referral docs sent me to in the beginning, but I quickly found my way to better options AND with the advice of a couple people (one of them being a Pheo Para Trooper) and a timid email sent I very quickly had Dr. Pacak in my corner! How incredibly lucky I have been that things have been tweaked here and there just so to get me to the folks who were in the know the first time around. At 30, with all of this really being my first go-around, even if there is more to the story, I have a team of doctors on my side who will be watching like hawks. I'll be working with people who see people like me--and people with much more complicated stories like the Pheo Para Troopers featured in these stories--on a daily basis.
How can I be anything but grateful then?! Forget gloomy!!! I got the one in a million luck of going to some of THE LEADING experts on Paras and Pheos when the adjectives describing my ordeal could still be words like, "Just" and "Only." I haven't seen legions of doctors. While it felt for a while in the beginning, like I was having to explain my situation a million times to people who didn't fully understand, I've been on this journey less than a year and haven't really seen THAT many people.
In light of that, it only makes sense to shift any of my "Why did *I* have to get these rare tumors?" thinking to, "If I had to get these rare tumors how grateful I am that things aligned themselves just so leading me to one of the best teams possible to see me through this!"
One in a million luck, every once in a while, is a really great thing to have. Today, I'm glad I've got it.
Go read these stories. Find out why the Pheo Para Troopers are such a vital and needed organization. It's because of these people and others who are allying against these mysterious illnesses that hopefully more and more people are going to get to have luck like I did and find their way to the doctors and treatment that they need immediately and not half-way into their stories. I'm honored to join the ranks. I can only hope that I can help other people to be as lucky as I have been somewhere down the line.
Tuesday, March 29, 2011
Processing Tomasito
Suddenly, cool, calm, and collected Val has gone on vacation (Andrew would dispute that cool, calm, and collected Val ever resided here in the first place...). In her place is stewing, gloomy Val. I don't like her as much. Since we found out about "Tomasito," (the little guy on my other carotid has received his Val-nomer) I've been feeling pretty gloomy. This cinches the fact that this is something that I'll be dealing with indefinitely. As in the rest of my life, which I hope will be long. I had high hopes that maybe I was going to be in the 'sporadic' group of paragangliomas--that there would be no genetic mutation at the root of this and after Tomas I could be done--but this little nodule means that this is likely not the case. I'm finding that tough to swallow. I don't want to do this again. I don't like even the shadow of a possibility that my kids would have to deal with this either...
(Karen at the NIH actually said that "(If I have a mutation) It's not unlikely that you will have slow, clunky tumors growing throughout your body. No big deal. We just watch them and deal with them." What an interesting thought. I'd never thought about a tumor being slow and clunky. I guess slow and clunky is better than other prospects though...)
On top of it all, we have to figure out how to balance the rest of our life with trips to NIH and Tomasitos and potential clunky tumors. Did I mention that we're a Navy family? That we're up for orders? That Andrew is heading back into Sea Duty and we're supposed to have orders in hand right now, but don't because we were instructed to wait on all of this Tomas-y stuff to know what my Exceptional Family Member Program status would be? That we might be moving? That maybe it would be a good thing to move to be closer to the NIH? That maybe it would be an awful thing to move because we have a fantastic support system here, a home that we love, and stability? (And did I mention that I'm a horrible mover? I mean for a Navy wife I'm a horrible mover... ) I guess the truth of the matter is that about now I'd be panicking about orders and heading back to Sea Duty anyway, but adding in Tomasito and a body that is most likely predisposed to growing tumors for a hobby makes that all just a little more overwhelming.
For most of the Pheo-para folks out there news of a mini little nodule guy like Tomasito would be something to just take in a stride. I feel like I'm over-reacting by feeling so gloomy about it all. And the truth of the matter is we still don't know what our genetic testing results are so we aren't entirely sure exactly what we're dealing with. I should really wait to pull out the gloomy face til we have the whole picture, I guess. I am a pheo-para trooper light-weight though. I shouldn't be freaking out. I shouldn't feel gloomy. BUT I DO! I confess to my light-weightiness and promise to feel appropriately ashamed for it. Right after I bury myself in my Kindle and eat chocolate for a few days (by the way... we're seriously lacking on chocolate around here. I really need chocolate. And fruit... which would be better for me to hole up with than chocolate, but really let's just be realistic. Also toilet paper.... *sigh* If only growing a baby nodule named Tomasito was reason enough to avoid the grocery store...).
On the positive side of things: 1) After my Mama got sick when considering my dismal family history, it occurred to me that it would be nice to have a reason to have scans from head to toe periodically to make sure I didn't have anything weird growing inside of me. Guess what?! I GET TO NOW!!! 2) Tomasito is a tiny little guy. He should grow slowly. 3) I think Tomasito is a great name and it's even more fun to say than Tomas. 4) D.C. is a nice place to vacation. Now I'll have a reason to go there twice a year! 5) I already have some of the best people in the world on the case. 6) Andrew's command has been awesome and we have a lot of people looking for answers for us on the juggling of it all. 7) The ever-present joy of blog-fodder. 8) I'll never have to decide on WHERE to go for a family vacation again.
I guess we just have a lot of balls in the air right now and that this season, like so many others that we've weathered, is just "fraught," and that hopefully other seasons will shake out that will be less "fraught." We're moving into a time of pretty major transitions on the heels of a time of pregnancy and gorgeous new babyness and surgery and weird diagnoses. We're trying to figure out which way is up in all of it. I guess I need to give myself some room to be in all of that. The good news is I do have The Rock of refuge and strength to cling to. I'm clinging. I'm glad that He holds me fast even when the fingernails by which I've been hanging for a while give out. I am glad for the moments of peace that passes all understanding when they come. I am glad that my rock waits patiently for me to walk through the gloomy feelings that I have to get through first.
Stay tuned. The Tomas-saga continues. And feel free to send chocolate.
(Karen at the NIH actually said that "(If I have a mutation) It's not unlikely that you will have slow, clunky tumors growing throughout your body. No big deal. We just watch them and deal with them." What an interesting thought. I'd never thought about a tumor being slow and clunky. I guess slow and clunky is better than other prospects though...)
On top of it all, we have to figure out how to balance the rest of our life with trips to NIH and Tomasitos and potential clunky tumors. Did I mention that we're a Navy family? That we're up for orders? That Andrew is heading back into Sea Duty and we're supposed to have orders in hand right now, but don't because we were instructed to wait on all of this Tomas-y stuff to know what my Exceptional Family Member Program status would be? That we might be moving? That maybe it would be a good thing to move to be closer to the NIH? That maybe it would be an awful thing to move because we have a fantastic support system here, a home that we love, and stability? (And did I mention that I'm a horrible mover? I mean for a Navy wife I'm a horrible mover... ) I guess the truth of the matter is that about now I'd be panicking about orders and heading back to Sea Duty anyway, but adding in Tomasito and a body that is most likely predisposed to growing tumors for a hobby makes that all just a little more overwhelming.
For most of the Pheo-para folks out there news of a mini little nodule guy like Tomasito would be something to just take in a stride. I feel like I'm over-reacting by feeling so gloomy about it all. And the truth of the matter is we still don't know what our genetic testing results are so we aren't entirely sure exactly what we're dealing with. I should really wait to pull out the gloomy face til we have the whole picture, I guess. I am a pheo-para trooper light-weight though. I shouldn't be freaking out. I shouldn't feel gloomy. BUT I DO! I confess to my light-weightiness and promise to feel appropriately ashamed for it. Right after I bury myself in my Kindle and eat chocolate for a few days (by the way... we're seriously lacking on chocolate around here. I really need chocolate. And fruit... which would be better for me to hole up with than chocolate, but really let's just be realistic. Also toilet paper.... *sigh* If only growing a baby nodule named Tomasito was reason enough to avoid the grocery store...).
On the positive side of things: 1) After my Mama got sick when considering my dismal family history, it occurred to me that it would be nice to have a reason to have scans from head to toe periodically to make sure I didn't have anything weird growing inside of me. Guess what?! I GET TO NOW!!! 2) Tomasito is a tiny little guy. He should grow slowly. 3) I think Tomasito is a great name and it's even more fun to say than Tomas. 4) D.C. is a nice place to vacation. Now I'll have a reason to go there twice a year! 5) I already have some of the best people in the world on the case. 6) Andrew's command has been awesome and we have a lot of people looking for answers for us on the juggling of it all. 7) The ever-present joy of blog-fodder. 8) I'll never have to decide on WHERE to go for a family vacation again.
I guess we just have a lot of balls in the air right now and that this season, like so many others that we've weathered, is just "fraught," and that hopefully other seasons will shake out that will be less "fraught." We're moving into a time of pretty major transitions on the heels of a time of pregnancy and gorgeous new babyness and surgery and weird diagnoses. We're trying to figure out which way is up in all of it. I guess I need to give myself some room to be in all of that. The good news is I do have The Rock of refuge and strength to cling to. I'm clinging. I'm glad that He holds me fast even when the fingernails by which I've been hanging for a while give out. I am glad for the moments of peace that passes all understanding when they come. I am glad that my rock waits patiently for me to walk through the gloomy feelings that I have to get through first.
Stay tuned. The Tomas-saga continues. And feel free to send chocolate.
Friday, March 25, 2011
What We Know Now...
Trip two (short though it is) to the NIH has gone much more smoothly thus far than Trip 1. We've figured out how to get around to where we need to go both inside and outside the hospital. (The lab rat is starting to beat the maze!!!) There were far fewer worries both in and outside the hospital in general this time around. I knew how to get to all the places I needed to... Well mostly. I have had to ask for directions once, but I was headed in the right direction! So we've learned a lot at this point.
We really only had to come for scheduled labs and a follow-up appointment. It was certainly the longest trip I've ever taken to a doctor's office, I gotta tell you! But, though that felt frustrating to begin with, in the end I'm glad we got here.
So what do I know now?
1) Arriving during daylight and when the shuttle to the airport is still running is a GOOD thing.
2) Security is easier to get through with badges in hand.
3) How to get to the spot on the 5th floor where they do the supine blood draws
4) That the NIH can actually take more blood than a Red Cross Blood Drive one tiny vial at a time.
5) Having a hep-lock for an hour is better than having one for days and days.
6) How to find the GOOD gift shop
7) Where the cafeteria is and what time NOT to go... and also that they make decent dessert
8) I can appreciate the wonder of NIH a lot more readily when I'm not panicked about impending surgeries, pre-op sickies, breastfeeding bungles, or people who are freaked out by babies being present (though I understand that was partly out of concern for her). It is an amazing place where miracles happen every day.
As for the serious side of things... The follow-up appointment was also full of information. Most of it confirmed what we already expected. But still, some ground solidified.
First of all, I am again a medical rarity. In fact, I'm a medical rarity among medical rarities. That mean post-op infection that I had? It was the first one that Dr. Pacak has seen in head and neck surgeries in his 12 years of doing this. I was the first patient to sprout an infection after this particular procedure under Dr. Kebebew's care. This apparently happens so infrequently there has been debate about whether to even bother administering antibiotics before and after surgery. They said in these types of operations, an infection happens in 1 out every of 2,000 or 3,000 cases. I gotta tell you. I'm ready do stop being special. The docs were all very nice about it all and sympathetic about the extra ordeal I'd gone through. And one doc--He told me to go get a lottery ticket. Like yesterday.
Secondly, we got the official word about the pathology of the tumor. It was well-encapsulated. It hadn't invaded any other tissue and didn't have a blood supply. That means that it doesn't "look" like cancer. This is really good news. The doctor was sure to remind me though that you just can't tell with these tumors. Even the ones that don't "look" like cancer when they are removed may metastasize years down the line. They all have the potential to be malignant, but you don't really know until you know. Dr. Kebebew suggested that in light of that I get follow-up scans yearly.
Third, when we were here last time around and the Endocrine Doctor on my case was going over the scan results she mentioned a "possible" nodule on my lung and another one... bum bum bum.... on my other Carotid Body. We asked everyone we saw about those findings today. The lung nodule is most likely 'no big deal.' A very large portion of the population has lung nodules. Nodules on the carotid artery are... well, you know... less common. And I'm pretty sure things like Tomas are really all that grow there. Dr. Kebebew finally gave us the definitive word. There is something there. He was aware of it and had reviewed it before my surgery. He says though that it's too small to do anything about right now. The bottom line is that this 'something' needs to be surveilled as well. He said it may start growing 2 or 5 or 10 years down the line and then we'd need to do something about it. Or... it may just stay a 'something' and be a non-event.
So the over-arching theme is... We need surveillance of some sort for a while.... or really indefinitely.
The piece we didn't get today is the results of the genetic tests. If this 'something' on the carotid is a 'something' that would eventually become another carotid paraganglioma then, from what I've learned so far, it's VERY likely that I am a 'mutant' and this came about from one of the genetic mutations. I think that is the determining factor for whether or not they'll want us to continue in the NIH protocol, but maybe the nodule and need for surveillance will force that issue anyway.
Kind of a mixed bag, but all in all mostly just confirmation of what we already knew.
Praying for more smooth travels tomorrow... And that the control tower folks at DCA are awake when we take off in the morning. ;) Can't wait to get home to be with my girls and for this leg of the journey at least to finally be all the way over.
We really only had to come for scheduled labs and a follow-up appointment. It was certainly the longest trip I've ever taken to a doctor's office, I gotta tell you! But, though that felt frustrating to begin with, in the end I'm glad we got here.
So what do I know now?
1) Arriving during daylight and when the shuttle to the airport is still running is a GOOD thing.
2) Security is easier to get through with badges in hand.
3) How to get to the spot on the 5th floor where they do the supine blood draws
4) That the NIH can actually take more blood than a Red Cross Blood Drive one tiny vial at a time.
5) Having a hep-lock for an hour is better than having one for days and days.
6) How to find the GOOD gift shop
7) Where the cafeteria is and what time NOT to go... and also that they make decent dessert
8) I can appreciate the wonder of NIH a lot more readily when I'm not panicked about impending surgeries, pre-op sickies, breastfeeding bungles, or people who are freaked out by babies being present (though I understand that was partly out of concern for her). It is an amazing place where miracles happen every day.
As for the serious side of things... The follow-up appointment was also full of information. Most of it confirmed what we already expected. But still, some ground solidified.
First of all, I am again a medical rarity. In fact, I'm a medical rarity among medical rarities. That mean post-op infection that I had? It was the first one that Dr. Pacak has seen in head and neck surgeries in his 12 years of doing this. I was the first patient to sprout an infection after this particular procedure under Dr. Kebebew's care. This apparently happens so infrequently there has been debate about whether to even bother administering antibiotics before and after surgery. They said in these types of operations, an infection happens in 1 out every of 2,000 or 3,000 cases. I gotta tell you. I'm ready do stop being special. The docs were all very nice about it all and sympathetic about the extra ordeal I'd gone through. And one doc--He told me to go get a lottery ticket. Like yesterday.
Secondly, we got the official word about the pathology of the tumor. It was well-encapsulated. It hadn't invaded any other tissue and didn't have a blood supply. That means that it doesn't "look" like cancer. This is really good news. The doctor was sure to remind me though that you just can't tell with these tumors. Even the ones that don't "look" like cancer when they are removed may metastasize years down the line. They all have the potential to be malignant, but you don't really know until you know. Dr. Kebebew suggested that in light of that I get follow-up scans yearly.
Third, when we were here last time around and the Endocrine Doctor on my case was going over the scan results she mentioned a "possible" nodule on my lung and another one... bum bum bum.... on my other Carotid Body. We asked everyone we saw about those findings today. The lung nodule is most likely 'no big deal.' A very large portion of the population has lung nodules. Nodules on the carotid artery are... well, you know... less common. And I'm pretty sure things like Tomas are really all that grow there. Dr. Kebebew finally gave us the definitive word. There is something there. He was aware of it and had reviewed it before my surgery. He says though that it's too small to do anything about right now. The bottom line is that this 'something' needs to be surveilled as well. He said it may start growing 2 or 5 or 10 years down the line and then we'd need to do something about it. Or... it may just stay a 'something' and be a non-event.
So the over-arching theme is... We need surveillance of some sort for a while.... or really indefinitely.
The piece we didn't get today is the results of the genetic tests. If this 'something' on the carotid is a 'something' that would eventually become another carotid paraganglioma then, from what I've learned so far, it's VERY likely that I am a 'mutant' and this came about from one of the genetic mutations. I think that is the determining factor for whether or not they'll want us to continue in the NIH protocol, but maybe the nodule and need for surveillance will force that issue anyway.
Kind of a mixed bag, but all in all mostly just confirmation of what we already knew.
Praying for more smooth travels tomorrow... And that the control tower folks at DCA are awake when we take off in the morning. ;) Can't wait to get home to be with my girls and for this leg of the journey at least to finally be all the way over.
Monday, March 14, 2011
Top 10 List of Val's Goobie-headedness
Ways Val has looked like a Goobie head in the last month:
1) Wearing high-water work out pants, white socks, and black loafers for scans at the NIH.
2) Accessorizing with containers of my own bodily fluids on the first testing day at NIH
3) Forgetting to take my NIH ID badges off when I left campus
4) Wearing t-shirts advertising major medical institutions on the campus of other medical institutions.
5) Watching my 'not a tumah' neck swell up like a balloon
6) Wearing a hospital gown and blue jeans for most of the day on Friday.
7) Wearing a hospital gown splattered with Tomato Bisque soup and yogurt for the rest of my hospital stay.
8) Big ole bandagey gauze with a stretchy band holding it in place post infection
9) Crying in inappropriate places.
10) Cocking my head to one side pretty much constantly post operatively
Now will someone please tell me what exactly a Goobie head is? I don't know either...
1) Wearing high-water work out pants, white socks, and black loafers for scans at the NIH.
2) Accessorizing with containers of my own bodily fluids on the first testing day at NIH
3) Forgetting to take my NIH ID badges off when I left campus
4) Wearing t-shirts advertising major medical institutions on the campus of other medical institutions.
5) Watching my 'not a tumah' neck swell up like a balloon
6) Wearing a hospital gown and blue jeans for most of the day on Friday.
7) Wearing a hospital gown splattered with Tomato Bisque soup and yogurt for the rest of my hospital stay.
8) Big ole bandagey gauze with a stretchy band holding it in place post infection
9) Crying in inappropriate places.
10) Cocking my head to one side pretty much constantly post operatively
Now will someone please tell me what exactly a Goobie head is? I don't know either...
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