We're back from UW, and I'm beat and have no idea if I have it in me to make this a fun and pithy entry. But we'll give it a go.
We made the long drive, and I realized for the 279th time that I'm a country bumpkin. I did not feel at all at home in the big, impersonal medical hugeness around me. We waited for an hour in the waiting room, but eventually were called back.
After the nurse checked us in, a guy poked his head in and said in Andy's general direction, "Let me just look at some paperwork then I'll be right with you, sir." Now, two things I found a little disconcerting about this: 1) Andy wasn't the patient. I was. And I would think that a cursory glance at a chart would give one that general impression upon entering our room and 2) This wasn't the surgeon I thought I was going to see. We all know I do my homework and I'd looked the guy up. My surgeon was supposed to have unique teeth and rather--could only really be pulled off by somebody super smart--shocking hair. This kid looked like one of the smaller bit characters from Grey's anatomy (there ya go, Amy!). So I sat there and ruminated upon this and postulated that perhaps this gentleman was an intern or a resident and that brought my blood pressure down slightly. On the off chance he wasn't going to come in and tell me he was an intern or resident, I rehearsed a little speech about driving 2 hours, and waiting 1 hour, and doing my homework and demanding to see the guy with the smart-shocked hair.
The resident came back in and addressed me this time and explained that he was indeed a resident. And since he was a little Grey's Anatomyesque I think we shall name him. I'll call him McNervous since he seemed quite tentative about quizzing and examining me and also was rather embarassed to report later that the CBT discovery had been made during a routine "OBum...GYN check-up" for the pregnancy. He assured me that the surgeon that I expected would be in shortly after he asked me a bunch of questions and gave me a preliminary exam. So he did all that. He got my MRI and ultrasound reports and my lab test results all together and popped in the MRI disc. And while we're at this point can I just ask--why do the chairs in ENT's offices have to be so freaky? I once proposed to Dr. Lee, the ENT who took care of me frequently when I was a little girl, and I don't remember him having a chair that freaky, but the docs I've seen out here--their chairs are scary.. They're very cushiony which is good, and have arms in them, but they make me feel claustrophobic. I did get to go on a few short little rides up and down in the thing though.
Finally the expected surgeon arrived with McNervous and an intern for good measure and showed me my MRI and talked about Carotid Body Paragangliomas in general and about the procedure in specific. I really DID think I'd stepped into Grey's at that point as McNervous had to report all the details of my case to the super-smart surgeon while Intern Guy took copious notes . He fielded all my questions which was good, and I did have tons of them, of course. I was happy to find that I could even stymie this particular world-class surgeon with a question. He was set a little off-balance when I asked his opinion about a trip to NIH. Yes, the Pathological Googling Question Fiend strikes again!
(Also, parenthetically I gotta say I loved the intern even though he said hardly anything. The one thing he DID say to me was, "Is the baby a boy or a girl?" and though I was too shaken to really show him that I appreciated that little bit of humanity when I answered, I love that he asked and that he warmly wished us luck with everything when we left).
So... Did I get the answers I wanted? Was this guy 'the one?' (I feel kind of like I'm back into a search along the lines of the one for the man with the yellow leg).
The short answer is this: I was impressed, but disappointed. While it was incredibly obvious immediately that this doctor was highly experienced, he didn't have the magic 'big picture' that I've been looking for. He *is* incredibly experienced. He told me he's done somewhere between 75-100 of these procedures. That's certainly a much higher and more reassuring number than the '2 and a few during fellowship' that surgeon #1 had under his belt. He knows the procedure frontwards and backwards and is anticipating all the potential variables. He assured me he would be working in tandem with a vascular surgeon which was one of my biggest questions about the procedure. In short, he's more than got the skills to do this procedure.
BUT (because everybody's got a big BUT), when I asked my questions about the possibility of a genetic mutation at the root of this problem given my age and the location of the tumor he totally shrugged it off. He indicated he doesn't do follow-up because he doesn't find it necessary. He believes these tumors to be almost always sporadic and saw absolutely no reason to investigate further to rule out the possibility that it's not. His big picture seems to mainly involve his scalpel and my discharge papers.
The doctor at NIH indicated that given the variables involved here (age, location, etc) that there was a 40-50% chance that I carried the SDH mutation. Which begs the question--Is NIH doc stacking the numbers because it's his specialty and that skews his perspective.... or is the risk for this genetic mutation really as low as super surgeon we saw today indicated?
Even more... If we decide to go with the extremely capable surgeon we saw today, would I be satisfied, or will I always wonder and worry that there is more to the story?
So at this point it looks like our choices are: 1) To go to NIH. To bite the bullet and deal with the logistical craziness and the extra cost of travel cross-country several times to be sure that we have THE BIGGEST OF BIG PICTURES. Or to 2) Go with super-capable guy here... and try to manage the big picture myself by being a good self-advocate.
I wonder also about getting an endocrinologist or oncologist on the team--an oncologist simply because they deal with tumors and follow ups and that sort of thing and because of the low possibility of malignancy, an endocrinologist because this is a tumor of the endocrine system. I want somebody smarter than me to have the big picture and to 'have my back' so to speak for the long term game, but I have no idea how to find that person or if TriCare will even LET me try to find that person.
In addition, I fear that I really have over-researched... That I've made myself wonder about all of these possibilities that the doctors I have seen so far keep assuring me amount to chasing zebras. (And again I say--when you've caught one zebra in your living room, you can't help but wonder if the rest of the herd has come to visit!). On the other hand, I also don't want to look back in 5 or 7 years and find that I'm dealing with metastatic disease or a recurrence or a new para on some other part of my body and think, "Boy I wish I'd pushed harder to find out more when I had that thing removed," or even, "If only I'd known _____ then."
So I did get more information. I do know that I have a more than capable surgeon in this part of the world.... But I'm still left at a quandry as to what to do about 'The Big Picture.'
At least I got to hang out with my own 'McCast' for a while.
Wednesday, July 28, 2010
Saturday, July 24, 2010
Tumah Diva
It's not really an update per se, but I thought I'd plop down a post about how Tomas and I are getting along. I gotta tell you, sometimes he's a pain in the neck.
Ok, well... For all intents and purposes the tumor is 'painless,' though, I do have some tenderness in that area and I am hyper-aware of Tomas's presence. Maybe it's psychosomatic at this point, but when I turn my head or even really think about that part of my body I'm aware that there's a 'thing' there. Other than that I don't really have 'symptoms,' for which I am extremely grateful. Other tumors of this type (paragangliomas) can sometimes have some symptoms that are scary.
My emotions have been quite a roller-coaster from the get go. I'm starting to find a bit more of an even keel at this point, but I still have my moments. I've run the full gamut of feelings and a select number of individuals have been privy to some of those.
I have never been a fan of 'keeping things in perspective.' I don't like playing the 'it could be so much worse, so why should I feel bad?' game. I always figure that it's only going to make me feel worse to think about someone who is worse off than me. You know.... that pesky empathy thing. So I try to remember that my trouble is my own, and as a wise friend once reminded me 'the greatest pain you'll ever feel is your own.' In addition, I have a pretty good scope of perspective anyway since in the middle of my first pregnancy I got the news that my Mom had terminal cancer. There are plenty of things that this could have been that would have been much worse. As far as bad stuff going on in the body goes, my heart has gone on enough journeys with enough people I love to recognize what a blessing it is that this thing is treatable.
All that being said, I cannot escape the fact that *I* have a rare tumor in my body--and, y'know, the Carotid Artery is kind of a delicate and important part of the body. I can't forget for very long that the thing I feel in my neck will eventually be removed during a fairly delicate surgical procedure, and that said procedure will occur not long after I have a baby. I am reminded fairly frequently that this thing is rare and that the pathways to get my questions answered are limited (and we all know I ask a lot of questions). Plus, it kind of makes my head spin that suddenly I'm the girl who has to go to the super specialists. I thought only people on Lifetime movies needed doctors like that.
And for crying out loud, folks, I am a pregnant woman. People generally give preggos a break for crying during Hallmark commercials, so I try to give myself a little grace in the face of dealing with emotional outbursts having to do with a Carotid Body Tumor!
I've worried this weekend that I'm being a diva about it all. I hope that people don't think I'm over here going, "Look at me! Look at me! I'm pregnant and have a paraganglioma! Give me attention!" No. A tumor diva is the last thing that I want to be. As a person who has learned that I weather emotions better when I make it a point to verbally process them somewhere, I do try to do that with the people that I know will love me no matter what. And, if I'm asked for an update or talking with someone that I don't talk to often, I find it hard to be succinct in my explanations.... Maybe that makes me seem self-pitying or self-important... I don't know. I also know that since nothing too dramatic is going to happen on the tumor front until after baby is born it will just seem to most people--even those that know the whole story--that I'm a normal pregnant woman going through a normal pregnancy. I feel like I'm expected to see things that way too. To 'just focus on the baby in the meantime.' And I do try to. I do.
And speaking of pregnancy--I read weekly about the progress going on in my womb on various pregnancy websites and they all have message boards where women talk about their heartburn and hemorrhoids and how fat they feel and I always feel slightly tempted to write a post and say, "Yeah I hear you on the heartburn.... And this whole Carotid Body Tumor thing is kind of a kick too! Anybody else had any experience with one of those during pregnancy?!" just to see what kind of a response I get.
Ok. So I guess that would be me going "I have a tumor, Look at Me! Look at Me!" right?
The point is, I try not to think about it constantly. I try not to make the whole world about my tumor. (Although I will admit to saying things to Andy on occasion like, "Honey... could you get me a glass of water... The kitchen is so far away and I do have a tumor after all...." ;)). I try not to dominate conversations with it. I try not to be all, 'Me, Me, Me.' I WANT my world to be about my sweet little girl and her two equally sweet big sisters too. God is my ultimate focus and He is bringing me through this. And... I'm a girl who loves deeply and feels deeply for others and I want to be intimately involved in the joys and concerns of my friends and family too.
All that said, it doesn't go away for me. And it won't go away for a while. Depending on what we learn about my genes it may be something that we deal with on down the line too.
So I slog through and remind myself that, "It IS a Tumah, But it's not all about the Tumah!" Past that I don't know what to do. But I promise I'll try not to be a Tumah Diva.
Ok, well... For all intents and purposes the tumor is 'painless,' though, I do have some tenderness in that area and I am hyper-aware of Tomas's presence. Maybe it's psychosomatic at this point, but when I turn my head or even really think about that part of my body I'm aware that there's a 'thing' there. Other than that I don't really have 'symptoms,' for which I am extremely grateful. Other tumors of this type (paragangliomas) can sometimes have some symptoms that are scary.
My emotions have been quite a roller-coaster from the get go. I'm starting to find a bit more of an even keel at this point, but I still have my moments. I've run the full gamut of feelings and a select number of individuals have been privy to some of those.
I have never been a fan of 'keeping things in perspective.' I don't like playing the 'it could be so much worse, so why should I feel bad?' game. I always figure that it's only going to make me feel worse to think about someone who is worse off than me. You know.... that pesky empathy thing. So I try to remember that my trouble is my own, and as a wise friend once reminded me 'the greatest pain you'll ever feel is your own.' In addition, I have a pretty good scope of perspective anyway since in the middle of my first pregnancy I got the news that my Mom had terminal cancer. There are plenty of things that this could have been that would have been much worse. As far as bad stuff going on in the body goes, my heart has gone on enough journeys with enough people I love to recognize what a blessing it is that this thing is treatable.
All that being said, I cannot escape the fact that *I* have a rare tumor in my body--and, y'know, the Carotid Artery is kind of a delicate and important part of the body. I can't forget for very long that the thing I feel in my neck will eventually be removed during a fairly delicate surgical procedure, and that said procedure will occur not long after I have a baby. I am reminded fairly frequently that this thing is rare and that the pathways to get my questions answered are limited (and we all know I ask a lot of questions). Plus, it kind of makes my head spin that suddenly I'm the girl who has to go to the super specialists. I thought only people on Lifetime movies needed doctors like that.
And for crying out loud, folks, I am a pregnant woman. People generally give preggos a break for crying during Hallmark commercials, so I try to give myself a little grace in the face of dealing with emotional outbursts having to do with a Carotid Body Tumor!
I've worried this weekend that I'm being a diva about it all. I hope that people don't think I'm over here going, "Look at me! Look at me! I'm pregnant and have a paraganglioma! Give me attention!" No. A tumor diva is the last thing that I want to be. As a person who has learned that I weather emotions better when I make it a point to verbally process them somewhere, I do try to do that with the people that I know will love me no matter what. And, if I'm asked for an update or talking with someone that I don't talk to often, I find it hard to be succinct in my explanations.... Maybe that makes me seem self-pitying or self-important... I don't know. I also know that since nothing too dramatic is going to happen on the tumor front until after baby is born it will just seem to most people--even those that know the whole story--that I'm a normal pregnant woman going through a normal pregnancy. I feel like I'm expected to see things that way too. To 'just focus on the baby in the meantime.' And I do try to. I do.
And speaking of pregnancy--I read weekly about the progress going on in my womb on various pregnancy websites and they all have message boards where women talk about their heartburn and hemorrhoids and how fat they feel and I always feel slightly tempted to write a post and say, "Yeah I hear you on the heartburn.... And this whole Carotid Body Tumor thing is kind of a kick too! Anybody else had any experience with one of those during pregnancy?!" just to see what kind of a response I get.
Ok. So I guess that would be me going "I have a tumor, Look at Me! Look at Me!" right?
The point is, I try not to think about it constantly. I try not to make the whole world about my tumor. (Although I will admit to saying things to Andy on occasion like, "Honey... could you get me a glass of water... The kitchen is so far away and I do have a tumor after all...." ;)). I try not to dominate conversations with it. I try not to be all, 'Me, Me, Me.' I WANT my world to be about my sweet little girl and her two equally sweet big sisters too. God is my ultimate focus and He is bringing me through this. And... I'm a girl who loves deeply and feels deeply for others and I want to be intimately involved in the joys and concerns of my friends and family too.
All that said, it doesn't go away for me. And it won't go away for a while. Depending on what we learn about my genes it may be something that we deal with on down the line too.
So I slog through and remind myself that, "It IS a Tumah, But it's not all about the Tumah!" Past that I don't know what to do. But I promise I'll try not to be a Tumah Diva.
Thursday, July 15, 2010
Counting with Val
Total number of visits to see medical professionals for the months of June and July: 14. And those were all for me!
Wednesday, July 14, 2010
Busy Week of Doctors and Doctor Crushes
I'm in the middle of three days of doctor's appointments. I wish I got paid for going to them because they are becoming a full-time job. Three down, one to go for this week.
So far the visits have been extremely positive even though in some respects they haven't moved us very far forward. Yesterday morning, I FINALLY got to have an ultrasound of the BABY and not some random body part. And SHE (that's right it's another girl!) is beautiful. She has the cutest little nose and lips. And she's busy. I knew this already as I felt her moving far earlier in this pregnancy than any of the others and she pretty much moves constantly. But it was so fun to be able to put pictures and movement to the sensations I've been feeling for the last few weeks. She's just beautiful and it did a mama good to spend an hour looking our sweet little girlie. Of course it was also good to see my new friend, Jim the ultrasound guy, again. He sort of recognized me when I walked back, but he couldn't place me. Then I told him I was 'his carotid body tumor' and he very enthusiastically asked if we were still planning on going to NIH. I might not have a memorable face, but once you see my carotid artery, you won't forget me!
As for the party in my neck we saw an ENT yesterday, supposedly about the Thyroid. He was tremendously encouraging and competent.... and in a bizarrely reassuring way he washed his hands of me. He basically told us to have whoever deals with Tomas do everything. Andy and I had to laugh: The consult was for the Thyroid issue solely. The doc came in, talked a lot about Tomas, looked at my ears, nose, and throat, didn't touch my neck or ask about my Thyroid at all, and referred us up to the surgeon we already had an appointment with for Tomas (which was reassuring in and of itself. We're seeing a good guy!). Then he breezed out of the room. When he left, Andy looked and me and said, "Um... I really, really like this doctor but did he say anything about your Thyroid?!" We eventually got most of our questions answered, but I think the function of the visit ultimately was just to reassure us that we're on the right track with all of the issues as we didn't get any new information about the Thyroid stuff and no further action was or will betaken by this doc. But you know... at least he cleaned out my ears!
I think it was also confirmation that we needed to get that second opinion. The difference between the demeanor of this doctor and that of surgeon #1 was quite telling. This doctor seemed to know far more about Carotid Body Tumors and paragangliomas, but felt we were in better hands with a more experienced specialist than him. Surgeon #1 has seen some CBTs and knows about them, but still didn't seem to have as great of a feel for them. Yet, he was ready to do the surgery himself anyway.
My appointment today resulted in a new doctor-crush. I am, for whatever reason, especially susceptible to Doctor-crushes (I was totally smitten with Doogie Howser when I was growing up. I admit it). I was left today wishing I could take this surgeon with me to help with all the other problems and procedures. She was so very reassuring. The other 'issue' we've been running to ground was basically ruling out any need to be concerned about breast cancer. No--no lumps--but other symptoms which were cause for concern to me and my Navy docs had cropped up. This doctor said that she is certain I have no reason to worry: that what we're seeing is nothing more than hormones run-amok and my body adjusting to those and preparing to feed the babe. Then she listened to me worry out loud about the other stuff and admonished me to 'not let it steal my joy.' Did I mention that I thought she was wonderful? I was almost disappointed that I wouldn't get to go see her again. Almost.... Except for the tiny little fact that I'm elated that now at least there's one issue OFF the table.
One more appointment tomorrow and that's a follow-up with surgeon #1. We'll get the results of the MRI and lab tests and maybe get a bit more general information. I was advised by a certain medically inclined and very wise sister-in-law not to crush the doctor-ego by waltzing in and saying, "Hi Surgeon #1. Your bedside manner is nice enough, but we don't think you're our guy for this surgery. You're fired!" So, alas, we'll play nice and vaguely refer to the fact that we're exploring all of our options. Still I do hope to get some information and add to our collection of radiology reports and discs.
After that, it's full speed ahead toward our appointment at UW in two weeks (though I still don't get a break from appointments: next week I have a regular OB check-up, a visit to the dentist for fillings, and a trip to legal to make sure all my ducks are in a row if I kick off unexpectedly). After the appointment at UW, I anticipate we'll start being able to make some decisions and get a feel for the game plan. Stay tuned for that. Then I hope things are going to get boring around here until it's time to make things happen!
So far the visits have been extremely positive even though in some respects they haven't moved us very far forward. Yesterday morning, I FINALLY got to have an ultrasound of the BABY and not some random body part. And SHE (that's right it's another girl!) is beautiful. She has the cutest little nose and lips. And she's busy. I knew this already as I felt her moving far earlier in this pregnancy than any of the others and she pretty much moves constantly. But it was so fun to be able to put pictures and movement to the sensations I've been feeling for the last few weeks. She's just beautiful and it did a mama good to spend an hour looking our sweet little girlie. Of course it was also good to see my new friend, Jim the ultrasound guy, again. He sort of recognized me when I walked back, but he couldn't place me. Then I told him I was 'his carotid body tumor' and he very enthusiastically asked if we were still planning on going to NIH. I might not have a memorable face, but once you see my carotid artery, you won't forget me!
As for the party in my neck we saw an ENT yesterday, supposedly about the Thyroid. He was tremendously encouraging and competent.... and in a bizarrely reassuring way he washed his hands of me. He basically told us to have whoever deals with Tomas do everything. Andy and I had to laugh: The consult was for the Thyroid issue solely. The doc came in, talked a lot about Tomas, looked at my ears, nose, and throat, didn't touch my neck or ask about my Thyroid at all, and referred us up to the surgeon we already had an appointment with for Tomas (which was reassuring in and of itself. We're seeing a good guy!). Then he breezed out of the room. When he left, Andy looked and me and said, "Um... I really, really like this doctor but did he say anything about your Thyroid?!" We eventually got most of our questions answered, but I think the function of the visit ultimately was just to reassure us that we're on the right track with all of the issues as we didn't get any new information about the Thyroid stuff and no further action was or will betaken by this doc. But you know... at least he cleaned out my ears!
I think it was also confirmation that we needed to get that second opinion. The difference between the demeanor of this doctor and that of surgeon #1 was quite telling. This doctor seemed to know far more about Carotid Body Tumors and paragangliomas, but felt we were in better hands with a more experienced specialist than him. Surgeon #1 has seen some CBTs and knows about them, but still didn't seem to have as great of a feel for them. Yet, he was ready to do the surgery himself anyway.
My appointment today resulted in a new doctor-crush. I am, for whatever reason, especially susceptible to Doctor-crushes (I was totally smitten with Doogie Howser when I was growing up. I admit it). I was left today wishing I could take this surgeon with me to help with all the other problems and procedures. She was so very reassuring. The other 'issue' we've been running to ground was basically ruling out any need to be concerned about breast cancer. No--no lumps--but other symptoms which were cause for concern to me and my Navy docs had cropped up. This doctor said that she is certain I have no reason to worry: that what we're seeing is nothing more than hormones run-amok and my body adjusting to those and preparing to feed the babe. Then she listened to me worry out loud about the other stuff and admonished me to 'not let it steal my joy.' Did I mention that I thought she was wonderful? I was almost disappointed that I wouldn't get to go see her again. Almost.... Except for the tiny little fact that I'm elated that now at least there's one issue OFF the table.
One more appointment tomorrow and that's a follow-up with surgeon #1. We'll get the results of the MRI and lab tests and maybe get a bit more general information. I was advised by a certain medically inclined and very wise sister-in-law not to crush the doctor-ego by waltzing in and saying, "Hi Surgeon #1. Your bedside manner is nice enough, but we don't think you're our guy for this surgery. You're fired!" So, alas, we'll play nice and vaguely refer to the fact that we're exploring all of our options. Still I do hope to get some information and add to our collection of radiology reports and discs.
After that, it's full speed ahead toward our appointment at UW in two weeks (though I still don't get a break from appointments: next week I have a regular OB check-up, a visit to the dentist for fillings, and a trip to legal to make sure all my ducks are in a row if I kick off unexpectedly). After the appointment at UW, I anticipate we'll start being able to make some decisions and get a feel for the game plan. Stay tuned for that. Then I hope things are going to get boring around here until it's time to make things happen!
Tuesday, July 6, 2010
Incidentally
So way back when they discovered Tomas was hanging out on my Carotid, we also found out he had some friends in my Thyroid. I've got a nodule, some cysts, and a Thyroid that is apparently a little over-sized all having a party in my neck. So the doctor put in a consult for that too.
A week or two later yet another issue presented itself. This one is likely related to pregnancy. We're running it to ground to find out and yet another consult was put in. So far there aren't any lumps or bumps involved with this one. I'm sure hoping to keep it that way.
So what that means is I get to see lots of doctors right now. I mean lots of doctors. More doctors than I have seen in years. What's the current count as of now? 2 GPs, a vascular surgeon, a general surgeon, an ENT surgeon. Those are the ones I have seen or will see in person in the coming weeks. Plus there's at least one referral that hasn't been put all the way through yet. And then there's email contact with Doctor Great at NIH, so far....
It also means I've gotten lots of ultrasounds. Every pregnant woman wants to have lots of ultrasounds, right?! EXCEPT WE WANT TO HAVE THEM BE OF THE BABY!!!! Someone didn't get the memo on that. Going on #4 today.
I'm thinking maybe I could start being like a smart-shopper for Doctor's offices. You know, see if there is some program out there that will pay me to visit and critique them? "Nice hold music, but the ceiling tiles have water stains that make me nervous." "Um... was it really necessary to put on a tie-in-the-back gown for that exam? Let's rethink things." What do you think?
A week or two later yet another issue presented itself. This one is likely related to pregnancy. We're running it to ground to find out and yet another consult was put in. So far there aren't any lumps or bumps involved with this one. I'm sure hoping to keep it that way.
So what that means is I get to see lots of doctors right now. I mean lots of doctors. More doctors than I have seen in years. What's the current count as of now? 2 GPs, a vascular surgeon, a general surgeon, an ENT surgeon. Those are the ones I have seen or will see in person in the coming weeks. Plus there's at least one referral that hasn't been put all the way through yet. And then there's email contact with Doctor Great at NIH, so far....
It also means I've gotten lots of ultrasounds. Every pregnant woman wants to have lots of ultrasounds, right?! EXCEPT WE WANT TO HAVE THEM BE OF THE BABY!!!! Someone didn't get the memo on that. Going on #4 today.
I'm thinking maybe I could start being like a smart-shopper for Doctor's offices. You know, see if there is some program out there that will pay me to visit and critique them? "Nice hold music, but the ceiling tiles have water stains that make me nervous." "Um... was it really necessary to put on a tie-in-the-back gown for that exam? Let's rethink things." What do you think?
Monday, July 5, 2010
Pathological Googling Sometimes Pays Off
Google. I love Google. I don't know what the world did before Google. Instant information at your fingertips about just about anything--including incredibly rare tumors.
I Googled. Oh boy did I Google. I Googled because it calmed me. Because it was some little thing that I could DO in the midst of a situation over which I was powerless. I Googled to find out about the tumor. I Googled to find out about the big words that I was reading that were about the tumor. I Googled to find other people who had had this same diagnosis. And I Googled to find a doctor.
It became nearly pathological.... Ok more than nearly. But here's the thing. My General doctor didn't know much about what I was dealing with. Surgeon #1 didn't inspire much confidence. It became evident fairly quickly that to make sure I got the care I needed *I* was going to have to become an expert. And so in the last few weeks, I have.
Eventually Googling turned up some names of doctors in other parts of the country who have performed the surgery to take out a Carotid Body Tumor. Then... Then I discovered something really cool.
If you have a weird diagnosis... a rare one... And if you send emails to specialists throughout the country with the name of your super weird and rare diagnosis in the subject line, an amazing thing happens: They answer.
After Googling my brains out trying to find someone who had been there and done that with this kind of surgery, and after learning more about the potential for a genetic mutation, and after wondering if there was a connection between my diagnosis and a tumor my uncle had had on his Adrenal gland some 15 years before, I finally came in contact with folks who knew a bit about paragangliomas. Two separate folks said the same thing: Get thee to NIH in Bethesda. They'll take good care of you. They named a doc there who actually specializes in these rare growths.
And the magical Mr. Google found me his email address.
I wrote the email. I hit send. And not three minutes later I had a reply asking for my phone number so he could talk to me himself.
He called about 10 minutes later and in one 10 minute conversation, I got more information than I had the entire week and a half prior. Also, he immediately offered to take on my case. NIH is a government run clinical research center. If you get accepted into one of their studies all medical procedures--surgeries, tests, whatever are covered. Travel expenses, however, would be our responsibility.
The NIH doctor has the big picture. He knows that younger patients often carry a mutation. He does extensive screening and follow-up.
Basically the chance to be seen by the number one experts--the folks who had seen more of this type of tumor than anyone else in the country--fell into my lap.
So what are we doing with that???
Well right now, we're leaning towards heading there for treatment after baby is born. I have been assured that I will be accepted for the study. The delightfully Polish doctor told me "NIH will accept you by 100%!"
That means quite a haul for surgery: from one coast to another, with a newborn. We have friends and family in the area. That's a perk. It's kind of overwhelming just thinking about the fact that I have something rare enough to consider coast to coast travel for treatment. That is the front-runner for options. We're not closing any other doors though. I have a referral in to see someone in Seattle. If I get a good feeling and a sense of 'big pictureness' there it might still be an option.
It is comforting, though, to know in the end I have an expert... Perhaps even THE expert, looking out for me and interested in making sure I get the best treatment possible.
I don't care which coast we're on when we kick Tomas out for good. I just want him to go!
This then is where Pathological Googling has it's rewards.
I Googled. Oh boy did I Google. I Googled because it calmed me. Because it was some little thing that I could DO in the midst of a situation over which I was powerless. I Googled to find out about the tumor. I Googled to find out about the big words that I was reading that were about the tumor. I Googled to find other people who had had this same diagnosis. And I Googled to find a doctor.
It became nearly pathological.... Ok more than nearly. But here's the thing. My General doctor didn't know much about what I was dealing with. Surgeon #1 didn't inspire much confidence. It became evident fairly quickly that to make sure I got the care I needed *I* was going to have to become an expert. And so in the last few weeks, I have.
Eventually Googling turned up some names of doctors in other parts of the country who have performed the surgery to take out a Carotid Body Tumor. Then... Then I discovered something really cool.
If you have a weird diagnosis... a rare one... And if you send emails to specialists throughout the country with the name of your super weird and rare diagnosis in the subject line, an amazing thing happens: They answer.
After Googling my brains out trying to find someone who had been there and done that with this kind of surgery, and after learning more about the potential for a genetic mutation, and after wondering if there was a connection between my diagnosis and a tumor my uncle had had on his Adrenal gland some 15 years before, I finally came in contact with folks who knew a bit about paragangliomas. Two separate folks said the same thing: Get thee to NIH in Bethesda. They'll take good care of you. They named a doc there who actually specializes in these rare growths.
And the magical Mr. Google found me his email address.
I wrote the email. I hit send. And not three minutes later I had a reply asking for my phone number so he could talk to me himself.
He called about 10 minutes later and in one 10 minute conversation, I got more information than I had the entire week and a half prior. Also, he immediately offered to take on my case. NIH is a government run clinical research center. If you get accepted into one of their studies all medical procedures--surgeries, tests, whatever are covered. Travel expenses, however, would be our responsibility.
The NIH doctor has the big picture. He knows that younger patients often carry a mutation. He does extensive screening and follow-up.
Basically the chance to be seen by the number one experts--the folks who had seen more of this type of tumor than anyone else in the country--fell into my lap.
So what are we doing with that???
Well right now, we're leaning towards heading there for treatment after baby is born. I have been assured that I will be accepted for the study. The delightfully Polish doctor told me "NIH will accept you by 100%!"
That means quite a haul for surgery: from one coast to another, with a newborn. We have friends and family in the area. That's a perk. It's kind of overwhelming just thinking about the fact that I have something rare enough to consider coast to coast travel for treatment. That is the front-runner for options. We're not closing any other doors though. I have a referral in to see someone in Seattle. If I get a good feeling and a sense of 'big pictureness' there it might still be an option.
It is comforting, though, to know in the end I have an expert... Perhaps even THE expert, looking out for me and interested in making sure I get the best treatment possible.
I don't care which coast we're on when we kick Tomas out for good. I just want him to go!
This then is where Pathological Googling has it's rewards.
The Grilling of Doctor #1
A few days after we found out about Tomas, we met our first surgeon. The referral was put in and dealt with with lightning speed for military insurance.
In the meantime, I had been Googling like a fiend. I figured if my doctor was using search engines, they'd work for me too. I learned a lot in a very short time. One of the things I learned was that paragangliomas are super rare. And that Carotid Body Tumors/Paragangliomas occur in about every 1-2 out of every 100,000 people.
And then I bought a lottery ticket. Well. No not really. But I really think I should, don't you?
I also learned that it's even rarer for this type of tumor to occur in younger folks and often when it does the chance that it came about because of a genetic mutation is higher, and the rates for malignancy, recurrence, and metastases also increase.
So what did that have to do with seeing the first doctor? Well... I wanted to know I had someone on my team who knew the big picture.
So... I grilled doctor #1. How many of these had he done? (2). What were the outcomes? (Both were doing fine). What kind of follow up do you do? This was the game-changer so it's not parenthetical. Well... Not much. Largely because he'd only done this in older patients. But maybe he would with me since I'm not 60. *gulp*
The good news we learned was this: 1) The tumor is small which means that the scary, freaky complications I'd been reading about for days would be less likely, and 2) We could wait until after baby was born to do the surgery to keep baby safe.
That day I had another ultrasound and an MRI of my head and neck. The MRI was kind of nice. I mean... It was loud as all get out, but I laid in a tube and had nowhere to go and no one to answer to for a half hour while listening to Solid Gold Oldies. I was good with that. I think they should really bill the things as mini-vacations for overstressed Moms. It could really take off!
By the time we got home that evening (after a trip to Famous Daves... Either the baby or Tomas is craving BBQ... I'm not sure which one.), the doctor had called back and confirmed that he thought my initial diagnosis was correct. Also by the time we got home, we had decided that while Dr. #1s bedside manner was nice enough, we wanted at least a second opinion and probably a different surgeon.
In the meantime, I had been Googling like a fiend. I figured if my doctor was using search engines, they'd work for me too. I learned a lot in a very short time. One of the things I learned was that paragangliomas are super rare. And that Carotid Body Tumors/Paragangliomas occur in about every 1-2 out of every 100,000 people.
And then I bought a lottery ticket. Well. No not really. But I really think I should, don't you?
I also learned that it's even rarer for this type of tumor to occur in younger folks and often when it does the chance that it came about because of a genetic mutation is higher, and the rates for malignancy, recurrence, and metastases also increase.
So what did that have to do with seeing the first doctor? Well... I wanted to know I had someone on my team who knew the big picture.
So... I grilled doctor #1. How many of these had he done? (2). What were the outcomes? (Both were doing fine). What kind of follow up do you do? This was the game-changer so it's not parenthetical. Well... Not much. Largely because he'd only done this in older patients. But maybe he would with me since I'm not 60. *gulp*
The good news we learned was this: 1) The tumor is small which means that the scary, freaky complications I'd been reading about for days would be less likely, and 2) We could wait until after baby was born to do the surgery to keep baby safe.
That day I had another ultrasound and an MRI of my head and neck. The MRI was kind of nice. I mean... It was loud as all get out, but I laid in a tube and had nowhere to go and no one to answer to for a half hour while listening to Solid Gold Oldies. I was good with that. I think they should really bill the things as mini-vacations for overstressed Moms. It could really take off!
By the time we got home that evening (after a trip to Famous Daves... Either the baby or Tomas is craving BBQ... I'm not sure which one.), the doctor had called back and confirmed that he thought my initial diagnosis was correct. Also by the time we got home, we had decided that while Dr. #1s bedside manner was nice enough, we wanted at least a second opinion and probably a different surgeon.
Let Me Introduce you to Tomas. My Tumah.
So if you're reading this, you most likely know that I've been diagnosed with a Carotid Body Tumor. Actually, I guess the more appropriate nomenclature is a 'Carotid Body Paraganglioma.' I do like to say paraganglioma quite a lot, but it doesn't go with 'Tomas' as well as 'Tumor' does.
So... What in the heck is that? Basically it's a growth that forms in the bifurcation of the carotid artery. They're generally not malignant, though they can be in some cases, and the chances of that are increased in younger patients (those diagnosed before age 40). The general protocol for treatment is surgery, and it's a delicate surgery because it is, after all, located on the Carotid Artery. Also there are some rather important facial nerves involved in the same general area. They grow slowly, but they do grow and left untreated they can become problematic in a number of ways, but especially if you are the rare, rare bird for whom the mass ends up being malignant.
Soon after I was diagnosed, Andrew said to me in his best Arnold Schwarzenegger voice, "It's not a tumah." To which I replied, "It is a tumah." Then we decided the tumah needed a name. We decided on Tomas (pronounced ToeMOSS). Which is why you are reading a blog about Tomas. And not... somebody(thing) else. (Pierre the Paraganglioma? Hmmm)
So how did I end up writing about Tomas? Or rather, how did I end up with this diagnosis?
I'd really like to know too. ;)
Not long after we found out we were pregnant with baby #3, I discovered a lump on my neck. Now, for years my neck has gotten lumpy and lymph nodey anytime I was feeling sick, so I chalked it up to an infection coming on. The infection never came though. In fact the kids got sick, Andy got sick. I didn't. I mentioned it at my first OB appointment and my doctor said it was weird that I had no other symptoms, but we'd watch it a while and see. It had been there 3 weeks or so at that point. 5 weeks later I had another appointment and the lump was still there and we decided we weren't going to just watch and see anymore.
So I was scheduled for an ultrasound.
Jim the ultrasound guy was super nice, despite my beginning the exam by saying, "I waited so long I was about to give up on you." But Jim the ultrasound guy asked some weird questions. First he asked if I ever felt my pulse in my neck in an unusually strong way. Then he asked me about my Thyroid. By the end of the exam, Jim the ultrasound guy looked a little subdued... And despite the fact that I had dismissed him as being a wet blanket when I asked him at the beginning of the exam if I could peek at baby after all was said and done, he suddenly switched the screen to OB and gave me a peek at the new one. And I cried. Then he told me my Thyroid was weird and assured me someone would get back to me about my other issue soon. He was extra nice. I just thought it was because he could tell I was an overwhelmed pregnant woman.... Turns out it might just have been because he'd seen something he'd never seen on his screen before and people are extra nice before changing the trajectory of a person's near future.
My doctor called 3 days later and said that things were going a different direction than expected. And he said the words "Carotid Body Tumor" for the first time. And lo, Tomas' existence was noted. My doc had never heard of a diagnosis such as this and had certainly never seen one and he began furiously poking the term into doctory search engines while I listened on the other side of the phone. He was going out of town the next day and wanted to get things rolling. But even though he was being super nice by not leaving me hanging in wonderment, I didn't find it even remotely comforting that HE was using search engines.
I got off the phone with my doctor. Called my brilliant sister-in-law. Left an alarming message on my Dad's machine, and promptly left for work.
Where I blubbered all over my clients' parents. Ahhh well.
And that, my friends, is how the existence of Tomas came to be known. And how our adventures with him began.
So... What in the heck is that? Basically it's a growth that forms in the bifurcation of the carotid artery. They're generally not malignant, though they can be in some cases, and the chances of that are increased in younger patients (those diagnosed before age 40). The general protocol for treatment is surgery, and it's a delicate surgery because it is, after all, located on the Carotid Artery. Also there are some rather important facial nerves involved in the same general area. They grow slowly, but they do grow and left untreated they can become problematic in a number of ways, but especially if you are the rare, rare bird for whom the mass ends up being malignant.
Soon after I was diagnosed, Andrew said to me in his best Arnold Schwarzenegger voice, "It's not a tumah." To which I replied, "It is a tumah." Then we decided the tumah needed a name. We decided on Tomas (pronounced ToeMOSS). Which is why you are reading a blog about Tomas. And not... somebody(thing) else. (Pierre the Paraganglioma? Hmmm)
So how did I end up writing about Tomas? Or rather, how did I end up with this diagnosis?
I'd really like to know too. ;)
Not long after we found out we were pregnant with baby #3, I discovered a lump on my neck. Now, for years my neck has gotten lumpy and lymph nodey anytime I was feeling sick, so I chalked it up to an infection coming on. The infection never came though. In fact the kids got sick, Andy got sick. I didn't. I mentioned it at my first OB appointment and my doctor said it was weird that I had no other symptoms, but we'd watch it a while and see. It had been there 3 weeks or so at that point. 5 weeks later I had another appointment and the lump was still there and we decided we weren't going to just watch and see anymore.
So I was scheduled for an ultrasound.
Jim the ultrasound guy was super nice, despite my beginning the exam by saying, "I waited so long I was about to give up on you." But Jim the ultrasound guy asked some weird questions. First he asked if I ever felt my pulse in my neck in an unusually strong way. Then he asked me about my Thyroid. By the end of the exam, Jim the ultrasound guy looked a little subdued... And despite the fact that I had dismissed him as being a wet blanket when I asked him at the beginning of the exam if I could peek at baby after all was said and done, he suddenly switched the screen to OB and gave me a peek at the new one. And I cried. Then he told me my Thyroid was weird and assured me someone would get back to me about my other issue soon. He was extra nice. I just thought it was because he could tell I was an overwhelmed pregnant woman.... Turns out it might just have been because he'd seen something he'd never seen on his screen before and people are extra nice before changing the trajectory of a person's near future.
My doctor called 3 days later and said that things were going a different direction than expected. And he said the words "Carotid Body Tumor" for the first time. And lo, Tomas' existence was noted. My doc had never heard of a diagnosis such as this and had certainly never seen one and he began furiously poking the term into doctory search engines while I listened on the other side of the phone. He was going out of town the next day and wanted to get things rolling. But even though he was being super nice by not leaving me hanging in wonderment, I didn't find it even remotely comforting that HE was using search engines.
I got off the phone with my doctor. Called my brilliant sister-in-law. Left an alarming message on my Dad's machine, and promptly left for work.
Where I blubbered all over my clients' parents. Ahhh well.
And that, my friends, is how the existence of Tomas came to be known. And how our adventures with him began.
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