Adventures with Tomas (the Tumah)

Unsettled

2012-03-12T15:28:00.001-07:00

For whatever reason I’m unsettled today. I read about the senselessness that happened in Afghanistan, I ached about the grief of a friend, and for whatever reason, my brain has been chewing on some of the harder aspects of the trip we took for tests and surgery to deal with my tumor last year.

I don’t know why these days and these moments of stewing on things that I’ve mostly felt my way through and that happened in the past come up as they do still.

But they do. Still.

Today I was thinking about the “extra” hard parts. The ones that weren’t directly related to the tumor that I had, but that complicated the situation just the same. I thought about how ridiculous it felt to have to go to another hospital–when I was at the foremost research hospital in the country–first because we thought I had pink eye (I didn’t) and then because my ear drum ruptured and I had an ear infection. I thought about how terrified I was when the potential case of pink eye nearly sparked an epidemiology scare that I was all but told could set off a chain of events that would wreak havoc not just for me but potentially for the entire institution performing my surgery. I thought about how much scarier it made tooling around in an unfamiliar hospital and having tests and procedures was when I could hear nothing out of my right ear because my eardrum had ruptured. I thought about the scowls I got at my choice to continue to breastfeed through the entire ordeal, and my choice to bring my baby along (and I was told this plan would be ok). I thought about how much easier it might have been if I hadn’t done all the research I had about breastfeeding and had just taken the doctors and radiologists very, very conservative advice rather than trusting my gut and the advice of the lactation consultants I met with and pumping and dumping but only as often as my lactation consultants advised. I thought about the disequilibrium and isolation-fearing despair I felt when my husband and my not quite three month old babe were told in no uncertain terms that they could not stay with me in my hospital room and the scary words of warning intoned everywhere we went about infectious diseases she could catch. I thought about the meds I wasn’t given to ease my anxiety prior to surgery and the pain meds I wasn’t given after the surgery again because of overly conservative medical folks who didn’t know how many choices there really are for a breastfeeding mother.

I thought about how terrifying it all was and how out of control I felt and how this was all outside of the actual surgery itself… the fear that I’d built up over the entire year about the feeling of being laid out on the table and positioned to be cut into. I considered how very much it felt that I was the ‘trouble’ patient who had so many different outside issues that I insisted on juggling.

Then the post-op infection. The pain and the helplessness. The doctors who were afraid to touch me. The scolding I got from local doctors who told me, “That’s what you get for seeking care 3000 miles away,” the day in the ER as my neck continued to swell, and the doctors didn’t come and didn’t and didn’t come… the tiredness, the vanco drip, the ache of being away from my big girls again so soon after we’d returned. The vulnerability of another unlikely thing going wrong.

I thought about how much more bleary-eyed caring for an infant feels when you have delicate surgery and a post operative infection requiring two solid days of intravenous anti-biotics. I thought of my husband pacing two different hospitals on opposite coasts with her in the middle of the night so I could rest. I thought about trying to hard to be the one to soothe her because she just wanted Mommy even before I really felt well enough to do so.

And then I got an email from my protocol folks asking me to come for scans and clinical appointments at a date that will be tricky for us between homecoming and kiddos in school and all that I had already been ruminated on came up that much more and was compounded by how stuck we are in this Navy lifestyle, and how isolated. I feel it so much more when the dates we called out for are crunchy for us and I need to think through contingency plans. We’re 2000 miles away from our families and all of the people that it feels more ok to impose upon to help with our kids when we need to jet set to the other side of the country to have pictures taken of my insides. The friends we’ve made come and go and we’re in a season of rebuilding new relationships after moves and Navy attrition have taken confidante after confidante and friend after friend and continue to do so.

I feel very vulnerable sometimes. I feel the heavy reality of how easily life can turn on a dime and how exposed and isolated I feel in those moments.

I am unsettled today. Truth be told, I am unsettled by that last couple of sentences a lot lately.

It’s not that we don’t have wonderful friends and people who care about us. We do. They’re all just scattered at varying proximity from us.

It’s not that I don’t understand and give thanks and praise to God for how well everything has turned out so far.

It’s just that I’m so disabused of the notion that there could be any guarantees that it always will.

I am unsettled. I live in a world where a husband and father of two kids could suddenly go and massacre innocents, walking miles in the middle of the night, and searching out people to harm–children to harm. I live in a mind and a heart that feels as much empathy for him and his family as I do for the innocents who were slain because I am positive that such a thing could not have happened outside of the grievous mental wounds of war. I ache at the horror of it and the terror of retaliations and the questions it stirs up.

I live in a world where one in a million tumors can hit you at random while you’re pregnant and then hit you again in all the ways the doctors say they probably never will. I live in a world where I know people who are living the reality of those tumors doing what the doctors say almost never happens every day.

I live in a world where the assumed levels of support aren’t always accessible even in a life blessed with rich friendships and loving family.

I am unsettled today. And sometimes when encountering the major and minor versions of this uneasy world and it’s lack of easy answers and inexplicable pain, I think unsettled is the reaction that makes sense.

BE Rare, SEE RAre

2012-03-12T15:26:00.002-07:00

This is cross posted at Stumbling Barefoot.

I was reading a devotional yesterday by Lysa Terkeurst and in it she relates a conversation she’d had with a friend. Her friend had been encouraging her to stay the course on something hard, not for outward rewards, but because she wanted to please God. She said these words to Lysa: ”Be rare.”

Rare. I have a funny relationship with that word. Most of you know that in June of 2010, when I was 16 weeks pregnant with my Lainey, I found out that I had a rare tumor called a paraganglioma on my carotid artery. When the doctor called to give me the news he literally had to look it up on Google and Wikipedia to give me any information about it. It was that rare. I’ve read figures that say 1 out of every 100,000 people will have this tumor and figures that say 3-8 out of every million people with get a pheochromocytoma or a paraganglioma.

A year ago today I had that tumor removed at the National Institutes of Health (which is, incidentally 3000 miles away from my home ). If you want to read that story check it out over here. Today is my Tumahversary.

Everybody feels ordinary sometimes. Every body feels like they are ‘nothing special really.’ Like there is nothing notable about them. When I was diagnosed, suddenly there was something notable about me. It made doctors look at me with interest, scrutinizing me like I was a lab specimen. I could see them get excited and could almost hear them bragging to their cronies, ‘I had a patient with a carotid body tumor today!’ I thought for a good part of the year that perhaps I had underestimated ordinariness. Truly, I think one of my biggest lessons of the year was to NOT devalue those things that are ordinary. That every moment is precious if simply because it comes around only once in all of time. The ordinary moment truly is, it turns out, rare. In this way I’m learning to SEE rare, though I do so VERY imperfectly.

But I think another lesson that God is teasing out of me in all of this is the challenge to BE rare. Just as Lysa says. Do I want to be the Zebra the doctors get excited to see at office visits because of my strange medical history and dogged insistence that we continue to be vigilant? No.

Do I want to be the girl who is less afraid to take risks? Less afraid to stick her neck out? Less afraid to play the odds and believe that they could fall in my favor? Less afraid to try even though I might fail? Yes. That’s the kind of rare I want to be…. the kind of rare that Lysa’s friend was referring to.

Did I tell you that I started entering contests and raffles this year? I always saw myself as the girl who didn’t have the luck for those sorts of things. I always sat and watched other people’s names be drawn out of a hat. I never thought it was worth it to play the odds until the odds played me.

Now I give it a shot. I’ve even won stuff. Free books, jewelry, raffle prizes at MOPS, giveaways. I figure if I’ve got 3-8 per million look, I might as well try to use it in my favor.

I’ve learned to stick my neck out… to be audacious.

I want to be like some of the incredible friends I’ve met on the journey. For some of these people those ‘improbable odds’ really socked them. Not only did they get rare tumors, but they got rare tumors that recurred, or metastasized or were genetic. They had the odds stack up against them and survived over and over. They hike mountains and go mountain biking and boldly knock on doors to fight for themselves or for others who also play the lottery of life and come out with the improbable. I want to face the scary stuff of life and come out swinging and still loving life, like these friends.

I also want to be like the gentleman I saw in the Naval Hospital Pharmacy this week.

Everyone at the Naval Hospital Pharmacy is cagey, impatient, tired of hurry up and wait and then more waiting. We’ve all been to our appointment, or waited in Urgent Care for too long.

But this gentleman had a sparkle in his eye and he spoke with kindness and cheer to everyone he saw. He made his way up to Carolyn and I (we were getting medicine for an ear ache after a trip to the Urgent Care) and asked her and another little girl sitting across from us if they listened to their mamas. They nodded shyly and he asked them if he knew why they should listen to their Mamas. And then he told them that it’s because their Mamas love them, and because God asks us to listen to our Mamas and Dads. He pulled out two golden dollar coins and gave them to the girls for being good listeners and then turned to me. He told me that he thought I had one of the hardest and most important jobs ever and that he was grateful that I did it and took it seriously. He, a Navy veteran, essentially thanked ME for my service. As he walked away I watched him approach other service members and retirees with a kind word for all of them. He was very much like the guy in the short film Validation just walking around giving encouragement to people.

What struck me in that drab environment full of impatient people just tired of waiting and barely masking their frustration in that was that this man was being rare. He chose a different path. Instead of blending in with the grey seats and the grey people surrounding him he was a flash of brightness encouraging those around him.

I’m on the cusp of a few changes that need to be made–as we all are often. Hard changes, but the every day kind. So many times I would get overwhelmed at the enormity of things. Make excuses and say, “It’s unlikely that this will ever really work so why bother?”

It’s beginning to occur to me–I can make the choice to be rare. I can let this challenge me to be audacious. I can make the choice to stick it out. I can make the choice to do the things I do, not for external validation, but to honor God. I can make the choice to be a ray of light amongst grey drabness. I can make the choice to stand up for what I believe in even when almost no one else sitting around me does. I can BE rare in all these ways too.

Getting something “rare” is teaching me to BE RARE and to SEE RARE. It’s teaching me to take the risks, and try, though it seems like failure is most likely. It’s teaching me to SEE the exquisiteness of every moment because they all come around only once.

I’m one year out from surgery today. It’s my Tumahversary. And I am thankful that the lessons it took me so long to see and give words to are emerging.

Backwards Relief

2011-12-06T16:06:00.001-08:00

If you've been reading here long you know the question of whether or not Tomas and Pheochromocytomas and Paragangliomas in general are considered 'cancer' from the start has long bugged me. The literature that can be found says 'benign neoplasm' and 'non-cancerous' over and over. Indeed, some of the NIH's own informational websites even say 'non-cancerous.' But... Something has always struck me as troubling about that.

"Regionalized" disease does not necessarily mean that the disease will not become malignant. It does not mean that the disease will not recur. The NIH especially, and other institutions increasingly, admonish their patients to have LIFE LONG follow-up because the potential for recurrence and metastasis exists for years--even 20 or 30 years--down the line.

So I asked Karen Adams, the Coordinator of the Pheochromocytoma Protocols at the NIH flat out--Karen... Is this stuff cancer? When is it considered cancer? Is it always considered cancer or is it only called cancer at a certain point?

And Karen called today just to address that question because Karen is awesome like that and she said, "It's metastatic when it's spread to a non-chromoffin site. It's recurrent if it comes back in the same place or in another chromoffin tissue site."

And so I said--, "And is it cancer?"

YES. YES. YES. It is cancer. According to the NIH Pheo-para protocol, it IS cancer. It IS cancer from the beginning. And doesn't that make so much more sense than "Well it isn't cancer.... but it could be cancer.... and you really don't know if it's cancer until it spreads.... and then it's definitely cancer and we really have limited ways of treating it."

And so, I was relieved today to find out that I've had cancer. My mother, who always had a colorful vocabulary would use the word 'bass-ackwards' to describe the fact that I am RELIEVED to know that I have had cancer. That's MESSED UP, right?!!!

Except... that when you have a disease that 'isn't cancer until it is cancer' you don't fit in any boxes. And if you have a disease that Wikipedia and Google tell you repeatedly is a "generally benign neoplasm," when doctors are talking to you they tend to not be real concerned. They tend to be a little lackadaisical. They tend to tell you that you have nothing to worry about.

Which might be true.

Unless it isn't. And then, you could find yourself in the position of thinking that you were in the clear for years and those doctors who were so confident in their 'almost certainty' that these tumors are benign could have pointed you in the direction of not needing regular scans, or of scanning just a part of your body and not the whole thing. And you could find yourself with "All the way cancer," and you might have missed precious time to fight that 'all the way cancer' because of misinformation that told you everything was 'probably' over and done with. (Edited to add) I think it's a relief to me because some how calling it 'cancer' gives it the gravity and seriousness that I feel is warranted for this disease (whether it's been called that or not). A doctor and a patient will react differently to a 'vague generally benign neoplasm' than they will to a tumor that slow-growing and low metastatic potential not-withstanding is called cancer.

It is a relief to not be in the no-mans land of disease. It is somehow a relief to know that 'cancer survivor' is nomenclature that describes me.

It's backwards that I'm relieved that it's true. But I am. And as a patient I wish that this was the accepted definition of Pheo and Para from the start. I wish that understanding would would start to trickle out of the NIH and into the consciousness of Endocrinologists and Head and Neck specialists the world over. If it WAS the accepted definition from the start I suspect that fewer doctors would allow themselves to be so lackadaisical about it. My second surgeon who I saw before our decision to go to the NIH--and this guy is one of the world-class head and neck surgeons and one of the most respected head and neck surgeons probably in the country--told me that the procedure to remove Tomas was basically "Elective." That my tumor didn't really need to come out because it was "probably harmless," but because of it's location near nerves and blood supply that it was considered best practice to remove them anyway. I think he said it to make me feel better. Instead I felt dismissed and confused at the vast chasm of difference in the concern about these tumors that I was seeing between institutions.

If it's backwards for me to be relieved that I've had cancer (and I'm as relieved about the 'had' word as I am about the 'cancer' word), then I'm ok with that. I WANT doctors especially to know that we NEED to have continuity in understanding about these tumors. We need to have a standard understanding. If the NIH Protocol defines Paras and Pheos as cancer from the start, I am ok with intellectually accepting that definition too. After all they have seen thousands of the things where most specialists have usually only seen a handful.

I had cancer. I survived paraganglioma. I am a cancer survivor by the NIH's standards. And while perhaps that should scare me under a rock instead of settling something deep in my brain for me, I'm ok with it.

The Long Short of It

2011-10-12T14:33:00.000-07:00

Just so I have a summary of the whole story some place... Here is the summary of the Tomas the Tumah blog in a long but shorter form. ;)

In the spring of 2010, soon after I found out I was pregnant with my third little girl, I noticed a lump on the right side of my neck. I tried not to worry too much, figuring it was a lymph node. At my first OB appointment when it was still there, I asked about it and was told to give it another month. Sure enough, a month later it was still there. So my doctor who was a great mix of watchful and proactive ordered a neck ultrasound he told me to rule out lymphoma. During the neck ultrasound I remember the ultrasound tech asking if I felt the pulse in my neck in any strange sort of way. I thought it was a weird question but told him I didn't. My doc called a couple of days later and told me I had a carotid body tumor/paraganglioma. It still makes me laugh that as he was talking on the phone with me he was looking it up on Wiki and Google himself to find out what exactly I had.

We decided to call the tumor 'Tomas the Tumah' because we are weird and twisted and because it is more fun to laugh then sit there scared.

I went through a few referrals with doctors who hadn't had much experience with paras and pheos and someone with either Pheo Para Alliance or the Troopers reccommended I check out the NIH. I haphazardly sent Dr. Pacak an email just asking for his opinion about how to proceed and was gobsmacked at the quick response I got and their willingness to take on the case. We evaluated our options (since we live in WA state and the NIH is all the way over their in Maryland ;)) and decided to go there.

In the meantime, I had the rest of the pregnancy to contend with. I was initially told that since CBTs are usually non secretory it was a non issue. Some chats with the folks at NIH and one visit with a really rude anesthesiologist later resulted in me being referred to a high risk OB in Seattle, so we started the weekly two hour trek to see her. The concern was that the stress of labor would cause a hypertensive crisis either from compression of the artery, or from Tomas the tumah 'waking up' as they sometimes do. Luckily the doctor was amazing, truly amazing, and despite a snowstorm the day of my induction, a flat tire on the way to the hospital, and a long painful induction (36 hours) she was born in the early morning on Thanksgiving 2010 while snow fell outside.

Two and a half months later, we flew out to NIH for a whilrwind week of testing followed by surgery the next week to remove Tomas. I ended up with a ruptured ear drum and an ear infection during the week of testing and a bladder infection the night before surgery. Small potatoes in the long run, but at the time it was just so frustrating. The surgery went well and we flew home.

On post-op day 16 I noticed a lump at my incision site. I went to the doctor the next day and was put on anti-biotics. The lump kept growing and getting more painful. The doctors at our local hospital didn't want to touch me so they told me to head up to the ER in Seattle. By this time, I looked like quasi-modo only with a lump on my neck. It was really grotesque and upsetting and also painful. I waited 9 hours in the ER without pain meds (because they were afraid to give me anything between the possibility of surgery and me breastfeeding) for the ENT surgeons to decide what to do with me. Just as they decided to open and clean the wound there at the ER bedside, my incision burst open. Then they finished the job and cleaned it out (which hurt. As bad as natural childbirth. I'm just sayin'). They put me on massive doses of antibiotics and I hung out in the hospital for a couple days to make sure the infection was gone. On my return trip to the NIH I was told that a post op infection after a CBT had never happened to ANY patients the doctors there had ever seen. We have started playing the lottery. ;)

We found out at that time from NIH about a nodule on the other carotid artery. We finally were able to navigate the insurance gauntlet of military medicine and got a referral to a great endocrinologist and found a local doctor which I saw for the first time last month. They evaluated the nodule on the left carotid and told me that they believe it to be a lymph node. I'm really happy with that news, BUT cautiously optimistic. I am determined to be vigilant to make sure that's all it is and to ensure that nothing else 'pops' up.

So far I'm not a 'mutant' (no genetic mutation has been found) but we're waiting for results of more genetic testing to come back.

Even though I've 'only' (perspective is a funny thing isn't it?) had this one tumor on my right carotid so far, it's been a pretty bumpy ride. I'm always in awe of the people in these groups and how much they have endured. For now I am trying to grasp the idea that I am a survivor (and I am PROUD to be a survivor!), and move forward with optimism and positivity. I don't know if this will be the only chapter in my paraganglioma story or if there's more to come, but I'm grateful that I've been given the chance to see the amazing doctors that I have and I'm grateful for the support and amazing friends I've found in online support groups for this zebra of a disease.

Really, Really, Really, Really Good News! REALLY!!!

2011-10-05T21:11:00.001-07:00

16 months ago I was told I had a tumor on my Carotid artery.

8 months later, I had surgery and I thought I would feel relieved because my tumor was gone.

Except I found out at the same time about this nodule on my other carotid artery. A nodule that I was told was 'definitely something.' And I tried not to freak out. And I tried to be happy, but I had this shadow of fear and dread about having to do the whole thing all over again.

Four months later I got the news that I didn't have the SDHD or SDHB mutation. And I was amazed and taken aback and confused because... I had another nodule and it just didn't make sense. And I tried to be happy. But I had this other nodule, which I was sure was another tumor. I asked people 'what else could this be?' and I never got a satisfactory answer. All seemed to point to this being another tumor.

A week and a half ago I met doctors on this side of the country that I loved. And I was happy about that, but revisiting that dread feeling because... I had a nodule. And what else could it be? And I was going to have to do it all over again.....

Tonight. Tonight one of those wonderful docs from UW called. She said she'd reviewed the scans I had earlier this week.

She said she had some news about that nodule....

That nodule she said... Doesn't appear to be a paraganglioma.

That nodule she said is most likely NOT a tumor.

It appears to be a lymph node. A NORMAL lymph node.

She waited for me to cheer and get excited or at least sound happy, but all I could say was, "Are you sure? And... Do I need to be worried about this lymph node?"

And then I got a little happy.

And then I hung up the phone.

And now I am looking at Andrew in glee and disbelief and yelling at random intervals, "I DON'T HAVE A TUMOR!!!!!"

And for the first time... For the first time in 16 months. That feeling of dread has lifted. And while I am still maintaining an attitude of cautious optimism.... And while I want to have this corroborated by the NIH.... And while I will still need follow up likely for the rest of my life....

For the first time in 16 months, I go to sleep out from under the shadowy spectre of a Tumor named Tomas....

The journey isn't over, but the burden has lifted. And I am so happy.

As a post script, I just have to mention how sad I am to learn of the death of Steve Jobs. Steve's cancer, like paraganglioma, was a neuroendocrine tumor. It was a NET arising in the pancreas. These tumors and diseases are so slippery and I am sad that he gave his life in the fight. My news tonight is good, but it just as easily could have gone the other way. I add my condolences to his family and I pray that they would be comforted in this loss.

Bailing out of the River DeNial and Back into Appointment Land

2011-09-29T22:54:00.000-07:00

I was having a lovely time floating in a river called DeNial and I wasn't entirely sure I wanted to stop my float, but alas, it was necessary and the outcome of bailing out was ultimately positive.

We've been on a search for local docs. Call me crazy, but I thought it would be kind of convenient to have docs on this side of the country to visit with when needed for follow up or emergent situations that don't need the complication of last minute airline tickets. So we slogged through that ridiculous referral process and twiddled our thumbs waiting for the appointment.

Monday was the day of the appointment, and I was feeling quite grumbly about it. Andrew thought my grumbliness was a little over the top until I told him that the reality of the situation was, I didn't want to go to the doctor at all because I didn't want to have tumors at all, and I really didn't think it was so unreasonable to not want those. He left me alone after that. (Smart man!)

But alas, I'm on the Paraganglioma-train and I may as well get used to it.

So away we went. Good things came of it despite my grumblings. The first doctor who came in was a "Fellow." It was abundantly obvious immediately that Fellows at UW are vastly different than Fellows at the NIH. The Fellows at NIH are amazingly smart people, but because of the whole structure there, they come off to me as something like a 'minion' to their Attending Docs. This Fellow though, Dr. R, set me at ease right away, earned my respect right away, and showed me immediately that she knew her stuff. Plus, she reminded me of my dear friend, Barbara Harroun, which really cinched the deal that I was going to love her.

The most exciting thing to me about the appointment was that they asked me questions and talked about things that I hadn't even thought about. I mean... I hadn't even considered them. It felt lovely!!! You gotta understand, it's not that I think that I'm such a know-it-all... It's just that hasn't happened much along this journey outside of the NIH. Dr. R, knew the symptoms of all the different genetic mutations and probed for hints about whether or not I might have one. She listened to and answered my myriad question (Well... there might have only been 12 or so). After getting my story, and checking me out thoroughly she went to chat with her Attending. She came back in with him (Dr. D), a few minutes later and they BOTH took on my questions and bulldogging for information.

The direction we're headed on as agreed upon that day (and may I just say that another thing that I loved about Dr. D. and Dr. R. was that I very much felt like part of my own treatment team) looked something like this:

1) I went immediately downstairs for some more genetic tests. We haven't ruled out all the possibilities for a genetic tie predisposition. I could still be a mutant. In fact, the docs at UW kind of hinted they would maybe be surprised if I wasn't. It was really strange to just be told to go downstairs and get tested as in the beginning of this journey I was told over and over again how 'unnecessary' said testing most likely was.

2) I have scans next week to see what is going on with Tomasito (Remember--he's the little guy who may or may not be hanging out on my other Carotid artery).

3) They're not super concerned with my Thyroid as the biopsy I had at the NIH indicated it's probably not related to the Tomas and his kinfolk, but we're keeping an eye on it with ultra-sounds, and I'll have one of those next week as well.

4) I'm going to meet with an ENT surgeon, not because another surgery is on the horizon, but just so I have some 'face time' with whoever may be performing a procedure to deal with Tomasito or any other Tomas kinfolk in the future. That appointment will happen in early November.

It was such an encouragement to find folks on this side of the country who are willing to have my back. It was reassuring to hear a plan, for scanning and surveillance. It's also just such a comfort that they're extremely knowledgeable, competent, and compassionate. I wish I hadn't been so ignorant as I was searching for doctors and referrals from the get go as I'm sure I'd have found the Endocrinologists at UW to be fabulous even at that point. I'm still grateful for my experience at the NIH and for the doors that has opened and continues to open for me. And I'm thankful that I have those incredible doctors and medical professionals on my team as well.

The phlebotomist taking my blood was kind of fun. He wore really colorful Converse Sneakers and when I asked him if he spent the whole day with folks who didn't look at him (because they didn't want to watch themselves get stuck with a needle), he confessed that he didn't like looking at the needle stick either. I raised my eyebrows and said that I certainly hoped that he'd kept his eyes open when he'd stuck me! He then offered to try again, blindfolded just to see if he could do it. I politely declined. :)

Let me just say though... I <3 UW. My experiences over the last year have all been so positive there and this experience only strengthened that feeling. It is an incredible institution.

We'll be anxiously awaiting the results of these scans and tests and then we'll know more of where we're headed. In the end, I guess if I had to bail out of DeNial, I'm glad we found some great doctors to make the trip worthwhile.

Where's the Tastier Tasting Food and The Smellier Smelling Flowers? What am I missing here??

2011-08-30T16:51:00.000-07:00

I read an article recently that was titled something like, "10 Things I've Learned From People Who've Had Cancer." It was about what you'd expect: stuff like, "People who have cancer cherish every moment of every day. People who have cancer don't mince words they tell you what they really mean. People who have cancer don't care what other people think. People who have cancer notice that flowers smell smellier and food tastes tastier."

I've decided to think of my experience with paranganglioma--since thus far mine has been/is localized--as 'pseudo-cancer.' I didn't do chemo and there's a lot of fuzziness about the benign/malignant classification in general, but it was a tumor and I will always be looking for recurrence and metastasis. Pseudo-cancer is how it feels.

So anyway. I've read some of these articles and I've read things from other survivors who I really admire and I hear this theme emerge. It's the smellier smells, tastier tastes, more colorful colors theme.

One of the reasons I feel like I haven't found my story is this: I haven't had this major epiphany that other survivors have. I still spend too much time on Facebook. I still take my kids and my husband for granted too often. I still forget to stop and smell the roses.

And so I kind of feel like: What's wrong with me?!

Why haven't I had this experience of enlightenment? Why am I not blissed out all the time just basking in the blessings I've been given?

Am I the most ungrateful brat of a Pseudo-cancer survivor that anyone has ever met? Is that it?

Throughout the experience I really have tried to focus on gratitude. And my family is pretty darned important to me and while my kiddos can and do tromp all over my very last nerve on a regular basis I adore them and I'm surprised by my delight in them daily. Still, I get bogged down in the banal and frustrated with the tiny and frankly I don't feel like I've had a major shift in my experience and perception of life. The changes that I sense in me aren't nearly so inspiring and touchy-feely.

My sense from these articles and from the stories of some cancer survivors that I've read about though is that they keep themselves in that head-space of sweetness and ultimate perspective. I don't feel like I've developed any heightened sense of that perspective and I am easily led astray into being stressed out about my dentist appointment (two fillings today... ouch!) or my lost keys or whether or not I paid the credit card bill last month.

I feel like there must be something wrong with me for not reaching this zen post-pseudo-cancer experience place of clarity.

I don't know. Maybe I'm just not there yet. Maybe it comes after some of the shock and fear and the initial looking over your shoulder and just plain tiredness start to wear off. Maybe it's part of the reality that we all 'feel and deal' differently. Or maybe it's part of the overly idealized cancer survivor story culture that has been created. I'm just not sure.

I think that part of me is afraid that I've missed a big God message here. Was there a sign in the sky that I was missing to tell me what the positive nuggets of this experience were supposed to be and how my character and my world-view should have been transformed? Did I miss the boat? Because instead of having this new higher-level perspective I just feel more boring. I don't laugh as easily, I'm more serious and sober. I don't quite do 'just having a good time' very well anymore. I'm no Eeyore. I am still looking for the 'gratefuls' and holding onto faith while I "Count It All Joy," but my happy-go-lucky got up and went elsewhere.

So... Am I missing something?

I hope that God will fill in the gaps, if the gaps do indeed exist. I hope that He will continue to help me make sense of it all as I process all this.

In the meantime, if you know the trick to making your food taste tastier and your flowers smell smellier, could you let me in on the secret password? This experience was big and hard and scary enough.... I don't want to have to go through a hairier one to get that point!

How do I get to "Normal" from here?

2011-08-04T16:40:00.000-07:00

I stumbled upon this article today with a sigh of relief.

You mean I'm not the only one?!!! Paraganglioma not quite exactly being cancer notwithstanding, I find that I'm relating strongly to stories of how people feel after surviving the Big C.

We evicted Tomas in February, had our follow-up in March and in the meantime we've kind of been marinating in this new space.

I wish I could tell you we were marinating in normal. But I don't feel normal. I mean... Tomas is gone and we finally got the genetic testing results and they were unbelievably--NEGATIVE?!--at least for the two most highly suspected mutations. And yeah I've got little nodule Tomasito on the neck but here we are in a holding pattern which means that I should just be sprinkling fairy dust and rainbows of happiness behind me with every step I take, right???

Oh. I wish. I just don't work that way. I mean.... I can be whimsical, but I've never been light enough in any sense of the word to do the whole Tinkerbell routine. It's just the truth.

Don't get me wrong I've got the important kind of joy: The kind that is unshakable in the face of even things like Tomas and worse because I know that I am Abba's beloved and He cares for me. But I find that outside of that particular stream of joy the rest of my emotions can be rather variable.

I'm a girl who battles depression off and on. And this was a tough year. A really tough year. And as I mentioned in the previous post there are still plenty of loose ends. By and large I just keep waiting to feel happy and relieved and instead I find I just feel discombobulated.

I can't just "Go back to normal," because I'm a different person now. I'm a person who has not just been hit with a serious illness as a family member, but now the dragon of cancer or at least pseudo-cancer has come knocking at my own door. No, I didn't go through radiation or chemotherapy, but from diagnosis to surgery it was 8 full months. Plus the post-op infection and now... Tomasito. That's a long time to live in the shadow of an illness. I didn't come out unchanged. Neither did my family. We know now for better or for worse--and yes, some of it is definitely for better--that ANYONE can be that 1 in a million person. We just can't take it for granted that the crazy story or difficult misfortune won't happen to us.

(On the flip-side, we're now more likely to sign ourselves up for drawings and take those surveys they give out at restaurants with the potential promise of gifts and good-fortune.... You gotta make the Zebra luck work for you once in a while!)

But I've survived. I am surviving. I am a survivor. And isn't that a happy thing?

Yes of course! But it's a sober kind of happy. It's a deep breath, long sigh, look over your shoulder kind of happy.

I resonated so much with the article, but especially with this:

Time to celebrate and move on, right? At least that’s what I was hoping, but it didn’t work out that way. I was glad the cancer was gone, but instead of feeling elated, I was like, “Now what?”...... Everything had changed, and I had no idea how to get back to “normal.”

I looked different. I felt different. Yet I was told to “move on.” Certainly everyone around me had done so, and they wanted me to as well. But I didn’t know how. I was confused and had no one to talk to. I felt guilty holding on to my cancer experience when everyone else was elated at my “survival,” but when it came down to it, I had nothing else to hold on to.

I can't tell you how emphatically I nodded at these paragraphs. I mean, you could hear the proverbial BBs rattling around the boxcar of my brain I was nodding so hard. It's hard to explain, and yet she did. I feel guilty holding onto my experience while everyone else has moved on or is in, "You should celebrate," mode. But I haven't made sense of it yet. I haven't processed it. I take a looong time to process things and I don't do a good job of attending to that job when I'm *in* something. I need time and distance to start looking at things and figuring out how they integrate into who I am.

I subjected myself to a Mary Kay makeover done by a very good friend, yesterday. As my girlfriend chatted about the importance of eradicating the wrinkles and 'lines of emotion' on our faces, a small part of me couldn't help but think, "Hey look--I may only be 30 and I may be Queen Frumpy who specializes in Goobie Headed fashion, but Darn it, I earned these wrinkles!" I feel like an old 30. A sober one. Life has piled up high in it's sweetness and it's goodness but also in it's difficulty and it's travail. If I have wrinkles and grey hairs already, it's because I've earned them.

I'm not saying it's all long-faces around here. I try not to be TOO morose. I've learned to whistle in the dark and talk in humorous terms about things that are serious, and quite frankly, scare the pee-wadding out of me. I've been told I've even elicited a giggle or two out of this-here blog. All that said, I'm still not necessarily sprinkling fairy dust over here. I may be even more thinkative than before--if that's possible! I am processing life with yet another pair of lenses. They are lenses of survivorship, but maybe survivorship isn't so much about feeling invincible after facing a challenge. Maybe it is more about knowing your own vulnerability and the vulnerability of the ones that you love and walking on anyway. That kind of thing is heavier than pixie-dust, and doesn't look as smiley sometimes, but I think it's still good stuff.

So I'm working on finding my way to Normal (I'm told it's a town not far from my Sister-in-law's place in IL....), but I know from previous walks through difficult times that it will be a new normal. I can only hope that I will like the Val of the new normal a little better and that God will use the hard stuff--has used it, is using it, will use it even if there is more to this story--to His glory.

Loose Ends

2011-07-29T11:00:00.000-07:00

Let me start this by saying that when I write here I am constantly thinking that other "Pheo-para" people must just shake their heads at what I write. So let me just say that the opinions and thoughts expressed here are not necessarily those of all Pheo-para people. Everyone else seems so much tougher than me. I guess I just need a tougher skin because when I think of all these things I just feel so vulnerable. All that said, this IS how *I* feel, and even if I am a wimpy light-weight I feel better getting it out of my system.

A cartoon that a friend who had dealt with metastatic disease shared got me to thinking. The cartoon dealt with cancer survival rates and what they really mean. She has been through so much more than me and I certainly don't pretend that my worries are anything compared to what she and others who have battled out and out cancer have dealt with. But it did get me to thinking about the flowcharts of uncertainty that seem to come with the territory of Pheo-para stuff.

One of the things that gets me is all the "Loose ends" involved in this disease. I'm always confronted by those loose ends when I talk to people about it all. And again, I love when people are interested and ask questions. I love that people care enough to want to know. But I find the loose ends and my feeling of being at a loss when trying to answer questions disconcerting.

Typical conversation:

Person: "So... How is your health?" (the awkward vague question--which I appreciate because it means person cares).

Me: "Oh, I'm doing pretty well."

Person: "So they got it all in the surgery right?"

Me: (Not sure how much information they really want), "The surgery was successful. They got the tumor out."

Person: "Oh good. So it won't come back?"

Me: "Well, it could. And it looks as though I have another one on the other carotid. We're kind of in a 'wait and see' pattern with that."

Person: "Oh. Well... But it's not cancer....?"

Me: (I still don't know quite how to answer this because it's like it's mostly 'no' but kind of 'yes' and I'm hearing more and more that some people DO consider it to be cancer, just encapsulated cancer (like prostate cancer often is), that has a lower likelihood of spreading, but all the information you can find on the net says, "benign until it metastasizes, so 'no until yes,' which we all know confuses me, and this is a really long and ridiculous run on sentence with lots of commas and I'm just going to leave it because it is parenthetical and now completely off topic) "Well, um... Hopefully not, but it does have the potential to metastasize, and then it would be considered cancer. So we just have to wait it see."

Person: "But you'll be out of the woods in say 5 to 10 years, right? As long as nothing else shows up?"

Me: "Recurrence or metastases can happen anytime after. Sometimes it occurs as early as a year or two later, and sometimes it's as far out as 20 years. So it'll be really important that I get scans at least yearly and keep tabs on things. So.... we just have to wait and see."

Person: *shrugs* "Well, we all have something, don't we!"

Me: *nods politely*

I don't like the idea that "most of the time" the disease behaves one way but that there is story after story after story about variances from that pattern. I already apparently have variances to that pattern because of the nodule (Tomasito) hanging out there even though the initial genetic testing came back negative. It feels like it's growing to me, which scares me. Since we're waiting until I'm done breastfeeding to go back to the NIH so they can irradiate me to their hearts' content, I'm kind of in a no-mans land of information. I'm hoping that once I finally get to see the endocrinologist that I've been fighting tooth and nail for a referral to that they'll want to do a scan and have some more answers for me. Right now I'm left wondering lots of things.

Like... If it's sporadic and bi-lateral lesions almost never happen outside of the presence of a genetic mutation (the stats that I could find said about 5% of the time and come on... having this at all is super rare, so we're talking super rare on top of super rare), why do I have this nodule or mini tumor (which is actually already over a centimeter in one dimension)? Is there another mutation that I wasn't tested for at play? Could there have been a mistake with the testing (NIH is amazing, but I'm human and so are they and so I still wonder)?

If I have bilateral disease what does that mean with odds of recurrence and metastases?

Will I need another surgery? When?

I hear murmurings about some other risks with a second surgery--Probably not a high rate for these risks, but they are there... How will I fare with that?

Or will I even need one? Maybe this could be something else? But if so... WHAT COULD IT BE?!

I keep thinking of Jesus saying in Matthew 6, "Who of you by worrying can add a single hour to your life?" I translate it to, "Who of you by worrying can keep a single tumor from growing?" And I know it's true. And I try not to worry. And I try just to trust. I can't trust that bad things or worse things won't happen because bad and worse things do happen each and every day. I can trust that God is good and working for my good in all circumstances. So whatever happens I trust His goodness.

But that leaves me still wondering what will happen. Still grasping for answers. And still frustrated at the loose ends of this disease. Because even when you get the surgery and you reach the 'ending point' for treatment of a given tumor, it's never really over....

P.S. Reading through this in light of the rest of the blog I realize it must seem like I just say the same things over and over again. I guess that's because none of the concerns have gone away. Little details have just shifted from time to time. Still, I'm still feeling it. I might as well write it. I do apologize for the redundancy though. Next time maybe I'll just write, "Lather, rinse, repeat." Probably not though. ;)

Rare Bird Stuck in Red Tape

2011-07-13T10:52:00.000-07:00

This post was going to be written inevitably. It was just a matter of time.

Let me just tell you that having ongoing medical needs and needing to be seen within the framework of the bureaucratic insanity that is the military medical system (thankful for my health care, though I am! I really am!) is frustrating in epic proportions.

At this point we're in a holding pattern with the NIH. I asked about the nodule on the carotid and they said, "Oh yeah..... Well. Come back and we'll scan you." And I said, "But I'll freak you out with my scary breastfeeding infant again. How about I wait." And they said, "Ok. We'll wait and then when you come back we'll scan you til you glow!" Ok, so that wasn't exactly how the conversation went. But the point is when Lainey is weaned we'll proceed with them.

In the meantime, it's our hope to find a local endocrinologist who can keep an eye on me as well--without us having to travel 3000 miles. Why? Well. Because I need to be scanned at least once a year to make sure Tomas doesn't come back or show up in places he's not supposed to. And because there is this other nodule (Tomasito) that needs to be watched. And by the way, having one of these on the other side outside of the presence of a genetic mutation, from what I can glean from just reading, is kind of odd. I have lots of questions. And I'll wait to talk to the NIH folk, but if I can get information in the meantime I want to.

In order for me to go see an endocrinologist here, I need a referral through TriCare.

In order to get a referral through TriCare, I have to go see my Primary Doctor.

Except I don't have a Primary Doctor because my Primary Doctor left the clinic after the clinic said to him, "We think you're a great doctor. How about you keep working with us, and how about as a bonus, you can do the same job for less money?" And my Primary Doctor being the intelligent man and quality doctor deserving of pay that he is said, "Um... NO."

Which means I have an "interim" primary doctor. With very bushy eyebrows. And he's ok. But he doesn't know my history and he is NO Dr. C (Primary Doc). For that matter, my Primary Doc had a lot of catching up to do once I went back to see him after my pregnancy, because after all, it was the doctor who saw me during Alaine's pregnancy that did all the initial diagnosing and referring. He was a fabulous doctor and had stayed in the loop pretty well, so it wasn't too hard.

Really all I need is for SOMEBODY to type into their little computer screen that I need a referral to an Endocrinologist at the University of Washington so that I can then call the referral office and say, "THIS DOCTOR is the guy I need to see." Seriously. It's just a matter of a few key strokes. (Which, ironically, is another spot of red tape. I have to have the doctor make the referral, but the doctor cannot request a specific doctor. So I have to wait for the referral to be put into the system and then I have to call the referral gods and say--Hey--I can't just see any Dr. Joe Schmuckatelly. It has to be THIS guy. And then they decide if they're going to honor my request or send me to Dr. Schmuckatelly. So far they've been pretty great at working with me and I've only seen a couple of the Schmuckatelly varieties.)

So I call TriCare and I say I need to be seen. And I give them my Sponsor's social, and my current phone and my non-existent alternate phone and my address, and my bra size and the length of my middle toe on my left foot and they look in their system. I told asked them, "Look, can I be seen by someone who knows me? Like the doctor who followed my pregnancy?"

No.

Ok. Then. What do you have with with my interim primary doc?

Nothing for this calendar. We'll transfer you to the clinic.

So I'm transferred. I again give them my sponsor's social, current phone, n.e. alternate phone, address, bra size, and toe length. And I say I need an appointment to get a referral.

Let me just say at this point that when I'm having these conversations and I am talking to these people who I know are just doing their job within the ridiculous parameters that have been set up but I'm nonetheless a littel frustrated that I get a perverse kind of pleasure at throwing them for a loop about why I need to be seen. That conversation goes something like this:

"I need an appointment."

"Reason?"

"I need a referral to an endocrinologist?"

*slightly confused tone of voice?* "Ok. Why?"

"Because I had a Carotid Paraganglioma removed from my Carotid Artery in February of this year at the National Institutes of Health in Bethesda, Maryland."

*stunned silence*

Then, "Ok Mrs. Roseberry, we have an opening next Monday."

Sure, I'll take that.

Guess what?

It's not with my primary doctor, or my interim primary doctor, or the doctor who followed me for my OB care.

It's with a totally new doctor who doesn't know me from Adam (or Eve). And he ISN'T my new primary doctor. He's just a guy kind of connected to my non-existent primary doctor via clinic.

This will be fun..... *maniacal gleeful giggle*

Congratulations, You're Not a Mutant--Now What?!

2011-06-20T13:41:00.000-07:00

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.

But It's Not Cancer Right???

2011-05-27T16:32:00.000-07:00

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...)

Waiting... Wondering.... Choking on Chicken

2011-05-06T10:22:00.000-07:00

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....

The really Rare Luck I've got

2011-03-30T17:18:00.000-07:00

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.

Processing Tomasito

2011-03-29T15:22:00.000-07:00

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.

What We Know Now...

2011-03-25T19:17:00.000-07:00

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.

Top 10 List of Val's Goobie-headedness

2011-03-14T17:48:00.000-07:00

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...

Soup and No Sharks

2011-03-13T22:45:00.000-07:00

So have I told you all about Louis Zamperini yet?

Andy got me a book on my Kindle for Christmas. It's the latest book by Laura Hillenbrand and it's about this guy who was an Olympian and then he was a bombardier in WWII.   It's an incredible, incredible story and it's basically like the worst case scenario of everything that could go wrong going wrong and someone still living to tell about it that I've ever heard. Louie gets to the end of all of this awfulness and he comes home and is really mad at God. Which, quite frankly, I get. But then he has this experience where his perspective shifts and he stops seeing all the wrong and awful things that happened to him and he finds himself just amazed at the miracle that he lived through it all and he lives out the rest of his life in joyful gratefulness to God. In Louie's story there are sharks. Real ones and lots of 'em. And those sharks have kind of stayed with me. I've been trying to see the 'gratefuls' and the spots of the goodness of God in this whole journey and trying to remember Louie's attitude. Thanks to Louie's story I have adopted the mantra, "At least there weren't any sharks."

So what can I tell you about the last week? Basically, I can say at least there weren't any sharks. Though I gotta tell you when Dad woke me up on Friday with news that our island was under a Tsunami Warning, I wasn't sure that one might not wash up right into my backyard. None did.

There was however a Quasimodo like hump that showed up not on my back, but on my neck. For those of you who saw the picture on Facebook let me tell you that the next morning that lump had more than doubled and by the time the story was over it was even bigger than that. Seriously.... I kept joking about looking like "Elephant Woman," but the really not funny thing was it looked really, really, I'm not kidding when I say "freakishly" bad by the time this was all said and done.

So about Tuesday of last week I started having some achy and unexpected pain at my incision site. That evening I noticed a hard lump--it almost felt like my tumor was back. When I woke up Wednesday and the lump was bigger I made sure to go see my doctor. He prescribed some anti-biotics to be on the safe side and recommended I come in for a follow up in 48 hours. When I woke up the next day, the lump was even bigger so I called my doctor to see what I should do and he said to come in right away.

I went in and heard words like, "possible abscess, possible pseudo-aneurysm (WHAT?! Thank God it wasn't that!), and possible hematoma." I also had an ultrasound and got to chat with my old buddy, Jim again. Scroll down to the beginning posts to see who Jim is. He is a very nice chap and actually did get filled in on how things 'turned out' with the freaky Carotid Paraganglioma diagnosis he'd helped to make. My docs conferred with NIH docs and the verdict was "probably a seroma which isn't life-threatening but should probably be checked out by someone else" was made.

At the end of the day we kind of got rolled over by a freight train with travel plans to go to the NIH the NEXT DAY. That was hugely overwhelming for several reasons and so finally Andy and Karen my coordinator at NIH--who y'all is one phenomenal lady--helped make a more sane plan to go to the University of Washington the next day instead and we backed up the travel plans and I slept better that night. Good thing too, because I didn't get a lot of sleep the next few nights.

So Friday dawned and we called my doc to see what the best way to get seen at UW was. And he said *sigh* "Go to the ER."

And so we went.

And they were very nice there. And they gave me a CT scan and took some blood and we waited.  We got there about noon.

While we waited the lump grew. While we waited the pain got worse. By 7 that evening as we were still waiting for the ENT docs to decide what to do to me I was crying anytime a medical professional talked to me because the pain was so bad and they were saying words like 'surgery.'

So we waited longer and finally the doctors came in with a plan. I think that was around 9 o'clock and somewhere after the time that Andy snuck out and told the nurses, "Look this woman delivered two children without pain medication and she says her pain is at 6. Can we help her here?" Back to the plan. The plan was NOT to put me under general anesthetic (yay!) but to do a bedside procedure to drain the abscess, put in a drain, and get some kick-butt antibiotics. They explained this procedure which involved making an incision at the original incision site and ironically as they explained, the incision site opened up by itself and began to drain on it's own. I guess in the end that clinched the decision of how to proceed.

Andy tells me that what happened next was pretty gross. I don't know about that but I can tell you that it HURT. They said it would be easier than the Fine Needle Aspiration I had while at NIH. Let me tell you I was begging for that procedure instead by the time we were done. But we got through it.    And I got some Advil for the pain and a couple hours later I felt better than I had in four days. The lump by the way, was not entirely abscess. A lot of it was lymphatic fluid, I believe, that kind of was my body's way of saying, "Something isn't right, Rally the troops!" The abscess was, however, big enough. Bigger than I expected even with the Quasimodo lump.

I was admitted, which I wasn't anticipating or wanting, but which I know was best. I got doses of Vancomyacin and Clindamyacin via IV Friday night through Sunday noon. I remembered how much I love UW and especially the AMAZING, PHENOMENAL, WORLD CLASS NURSING STAFF that they have. And I had their Tomato Bisque soup (which is also world class) for every meal that it was appropriate. UW's Tomato Bisque soup is some darned good medicine y'all.

We had some amazing friends back home who came to our rescue and took Carolyn and Abbie. Andy and Lainey stayed with me most of the time. Finally this afternoon we came home.

I'm up now trying to decide whether or not I'm having an allergic reaction to the antibiotics they sent me home with. Right now I'm landing on the side of probably not, I just had anxiety itching, but I'm sure one way or another I'll know by tomorrow.

So the best things I can tell you about the last few days is this: 1) I have amazing friends and family. 2) I am so blessed by the huge army of people who have prayed for me. And finally 3) At least there weren't any sharks and the soup was awfully good.

Let's see what this week has in store, shall we?

P.S. Even with the harrowing nature of the last few days, I feel like a colossal whiner when I look at the devastation in Japan. Absolutely heart-breaking.

Priveleged

2011-02-25T09:14:00.000-08:00

I'm sitting in the living room of my amazing friend, Shauna's home. Just breathing.

We've come out of the whirlwind. My first time at NIH is already starting to fade into memory and story. The edges are blurring and the sharp scary places are being covered with a layer of mental flannel.

And I get to be on the other side of it all. I get to be here. I get to stretch my toes out in the sands of the other side of it all. I get to be Val--the mother of three beautiful daughters, the wife of the most amazing man in the world, a fretter, a worrier, and you know what else? A perserverer. A survivor. A seer.

I've been reading One Thousand Gifts by Ann Voskamp and thinking about counting up the grace that God lavishes upon me. I haven't done so with pen and paper this trip, but I have kept running lists in my head. Sometimes I was just going through the motions reminding myself of the bright spots in the midst of the fear and the pain and the hassle and the hard.

I counted Thanks for a husband's hand to hold, and a baby's coo, and a nurse who listened. For Skype dates with my girlies, and hospital gowns that felt substantial, and a sense of humor to keep me grounded. For doctors who reminded me of benevolent monarchs, and surgeons with cool names and gifted hands, and Fellows who don't sleep and patiently answer questions, and the kindness of strangers who are all in it together.

I have sweated both the big and the small stuff these last few months. I've narrowed my vision at times. Plane tickets falling through and Taxi's not arriving and infections not going away just days before surgery and being scolded left and right for daring to have an infant and even worse wanting to feed her left me breathless and afraid. They were small things.

I'll go home and sweat more small things. The girls that I long so much to see right now will exasperate me. There will be details to work out for the next trip back. The weather won't cooperate. And Andy will end up working a crappy shift when he goes back to work.

I will fret and I will stew and at times I will even feel a little sorry for myself.

But how amazing that I get to! How amazing that I get to live this wild and crazy life with such beauty flecked in amongst the hard stuff!

I get to be here. I get to hug this sweet snuggling beauty that is Alaine. I get to squeeze the hand of my husband. It may take a long weary day of travel to get there, but I will get to gather up my big girls and revel in their hugs and their stories and their complete oblivion to the enormity of what happened while Mommy was gone. I get to walk through it all to moments like this when I can see with clarity that all of it--even the small stuff that I sweat in my narrow vision--is gift.

Before we left, while I was stressing over the details for the gazillionth time, Shari told me, "Things have a way of working themselves out and when they don't we find our way through anyway."

A lot of this trip felt like finding our way through anyway, but we made it. I'll go to sleep tomorrow evening in my own bed surrounded by the people who love me most in the world.

This world is dark and it is hard but it is full of such sweetness. I know it's cliche to reflect like this. I know that it just seems so predictable at a time like this, but the fact of the matter is, it's so freaking true.

I'll go back to sweating the small stuff soon. Maybe even in the next hour or so. But for now I'm so blessed to really see that even THAT is something that I get to do.

Ding Dong Tomas Is Gone

2011-02-24T10:34:00.000-08:00

Tomas is gone! He's gone!!!

In his place is an incision a little over an inch long and some steri-strips and well... a little bit of pain. But that will pass.

What to write about the experience? I don't even know. I found out the night before the procedure that I had a UTI and was put on another antibiotic (After the one the week before following the ear drum rupture). That wigged me out, but didn't end up being such a big deal once we found an antibiotic that was breast-feeding compatible and that I wasn't allergic to.

The same nurse who checked me in checked me out and she was a trip. She kind of had a "It's not like I'm your NURSE or anything--Do it yourself!" attitude. I seriously think she meant to be warm and nurturing, but it just didn't quite work for her. Luckily, she was with me for the parts of the experience that I felt the best and most independent for and it worked out. That meant she made me laugh instead of making me cry.

My three nurses the day of the surgery were absolutely awesome and amazing. One of them, Wilma, became my hero when she told me about all the conflicting and confusing messages she was given by medical professionals when she went through breast cancer with a new baby. She so got it in a way that most people can't and she took SUCH good care of me. I needed a little mothering that day and permission to take it slow and easy and she gave me both. I am certain that God arranged it so that I would have her on my team at just that moment.

The surgery was successful and I'm recovering extremely well which makes me feel like it's strange to tell you that a lot of it felt just really traumatic. They were much more restrictive about Andy and Alaine being with me than I expected and that was hard. We did make that work in the end and skipping ICU and going straight to my regular room AND being released super early made that part of it more manageable. NIH is super conservative about breastfeeding mothers and that was hard. Coming out of anesthesia was hard. I felt like I was trapped in a sea of kelp and as romantic and Sea Ottery as that sounds I found it all just scary and painful and nausea-inducing. Thank God THAT was temporary.

My voice is raspy and gravelly and I have to work to get my words out. I want to be cooey and silly with my baby, and I sound like a scary halloween voice-over. I'm favoring the right side of my neck so I kind off walk with a crooked face and hunched back and I know I look like a deranged woman. The duet of raspy scary voice and crooked headedness I'm quite certain makes me scary to young children.

To check my nerve function and to make sure I wasn't having a stroke I got to do a lot of silly things. I've never stuck my tongue out at so many different doctors so many different times. And I'm happy to report that I still have the famous Val shoulder shrug going on.

My amazing, amazing surgeon and I had more embarrassing moments. Every time the man walked in the room I was in some form of undress. The first time he came in I was pumping milk. He came in to check on me and I think to do rounds as a couple other docs were with him. He opened the door and there I sat milking myself like I was Bessy the Cow. All I could think to do was whimper, "Please, please come back later!" And he graciously complied. Then all I could think about the rest of the day was how I'd yelled at my world-class surgeon. I finally got to talk to him yesterday fully clothed--though I was just finishing nursing that time even. Regardless he did an amazing job and is an amazing doctor. I can't overstate that. My incision is small. I don't even have stitches--just steri-strips. My pain is minimal and, for the most part, my nerve function seems to be good.

Dr. Pacak called me today here in the lodge since he'd missed me at the hospital. HE is a delight as well. I just can't talk to him and not feel cared about.

So I'm on the other side. Tomas is gone. I'm recovering well. I feel confident and strong a good part of the time. I'm finding recovery to be frustrating though as I'll feel so good one moment and so awful the next. Emotionally I go from feeling relieved and happy to just wanting to bawl. I think the enormity of it all is finally hitting and for the first time I really just feel broken.

We'll come back for follow-up in six weeks. Just a quick trip then. Genetic testing results won't be back until at least then and that's the piece of the puzzle that we really need. I really think I'm probably dealing with a genetic mutation. Maybe not, but I just have a feeling. Anyway... we'll deal with that when it's not just conjecture I guess.

For now I'm just going to keep recovering and celebrate that Tomas has left the building (well... he's still over in the NIH clinical center being divied up and studied for research purposes, but I'm done with him at least!).

Oh and I got my cool Lab Rat T-shirt. :)

Just call me Twitchy the Rat

2011-02-18T16:56:00.000-08:00

I cannot believe the week is over. I simply can't. It felt like it never would be. It felt like one big maze with no cheese at the end.

Speaking of mazes....

There are these shirts in the gift shop that say, "NIH" and have cute little lab rats on them... I'm so making Andy get me one when I need a pick-me-up this week, and I think I will wear it on the plane ride home as an explanation of the weird post-op neck I'll be carrying around while Andy carries all the luggage. So anyway, these shirts made me realize, that yes... *I* am the metaphorical lab rat.

So I was thinking of my role as a lab rat and finally it hit me--THAT is why I've been SO FREAKING LOST ALL WEEK LONG!!! It's part of the research that they don't tell you about. They keep you completely disoriented and finding obscure parts of the hospital all week long. Like a RAT in a MAZE. How did it take me so long to catch on to this?!!! I am a lab rat. But today... I got some cheese.

The tests are over. My CT scan was cancelled today which means that really, my testing schedule was super light this week. I ended up only having 2 MRIs, a PET scan, and a neck ultrasound. I also had countless labs a fine needle aspiration and a trip across the street to the Naval Hospital for a ruptured ear drum thanks to my constantly impacted ears and the plane ride here. So... it wasn't a total piece of cake.

Fantastic news of the day: We got the lab results form the fine needle aspiration and THAT bump at least is just a regular old nodule.  NO 'suspicious cells.' It'll need surveillance, but I get to keep all of my Thyroid and the only thing we'll have to deal with Tuesday is Tomas.

In other news I'm Vitamin D Deficient. Just like the rest of the state of Washington.

I met with my surgeon today and I really, really like him. I also like that his first name is Electron. Yes really. I guess his father was an electrical engineer or something. So THAT means that from here on out I can say that Tomas was "Electronically removed." Get it? Heeheehee.  He started out by asking me if I understood why the tumor needed to be removed and I rattled off, "Because it's a tumor and it will grow. Because it could compromise important nerves. Because depending on whether or not it is connected to a genetic mutation/where the cards fall it could be metastatic and in that case we'd want it out quick." He acted impressed, but looked at me kind of funny and I totally missed the fact that he was joking when he said, "Ok then. I guess you can also tell me the risks involved with the surgery." I wasn't as clear on those, but ratteld off what I knew anyway, and he interupted me and clued me in on the joke part. Luckily he forgave me for being a know-it-all. Between that and me totally missing the fact that he'd reached out to shake my hand just as I'd gone to fasten the flap on my nursing bra, it's a wonder that I didn't stay beet red the whole time. That he could put me at ease despite my faux pas was impressive. ;)

We also had an anesthesia consult where they outlined the procedure for the anesthesia and gave me a better idea of what to expect next week.  It's a little overwhelming honestly.

I'll be admitted Monday. I guess I'll have quite a few labs and pre-oppy things going on that day.  They'll come get me early Tuesday morning because I'm the first surgery on the schedule starting bright and early at 8 a.m. The surgery should last 2-3 hours. And they're going to paint my chest, neck, and part of my face orange with antisepticy stuff. Andy promised to take pictures (If he does, I'll smack him).

It was a gorgeous day here today. 70 degrees and sunny. We took a walk around the campus here and sat in a courtyard enjoying the breeze for a while. This weekend we hope to catch up with some friends and visit D.C.

A Lainey update: In the time that we've been here I've gone from saying that she's "2 and a half months old," to "She'll be three months old next Friday." AND she's started meaningfully reaching for things. I love it.

So by this time next week, Lainey WILL be 3 months old, we'll be ready to be discharged, I'll have a wicked looking bandage on my neck, and Tomas will be divied up and given to different doctors for research purposes. What a week it shall be.

P.S. I was saving the blog Title, "Do these Scans Make My Tumor Look Big??" all week long and never got to use it.... *sigh* What a waste!

Thursday Update

2011-02-17T18:00:00.000-08:00

Fine needle aspiration today on the Thyroid nodule (or "N'duule' as my endocrine Fellow says it) today. I'd classify the experience as somewhere between a piece of cake and a big pain in the neck. I also had an EKG which was honestly the easiest thing I've done all week. Tomorrow I'll have a CT scan and a consult with surgery to find out the details of the when/whys/hows of surgery as well as a meeting with anesthesia to see if they want to do any Alpha or Beta Blockers to keep any possibility of hypertensive crisis at bay.

I'm being admitted as an inpatient a little earlier than I expected and that's thrown me for a bit of a loop.

Andy gave blood today and they give you really good Blood-letting gifts here: A little insulated lunchbox, and a bottle of water, and a chip clip, and a pen, and MILANO COOKIES!!! He snuck a package out for me because that's how much he loves me. I love him because he's the kind of guy who sees that they're in need of A+ blood and he says, "Where's the blood bank?" Well... I love him because I just do, but that's one of the things I love about him.

One of the things that we learned earlier in the week is that Tomas really has gotten fat. He's almost doubled in size. We need to get that booger out of there if you ask me.

Honestly, I've had several moments of just wanting to go home and pretend that none of this is happening and go back to life as normal. This has been really overwhelming and honestly harder than I expected at times. But in the long run I know I'm getting the very best care possible.

My favorite things so far about the whole experience have been the sense of community that exists among the patients here and the incredible diversity of people. It's been a while since I've been in a population this diverse and I love the richness of it. On the first point at the lodge where we're staying there is a community kitchen which is the only place that we're allowed to eat. And while that is incredibly irritating when I just want to eat my Oreos and Milk upstairs in my room watching Bones it also makes for great chances for folks to sit and talk and swap stories. I've met several other people with weird tumors like mine. And THAT brings instant camaraderie, I gotta tell you. (You can tell the pheo-para patients. They're the ones carrying around containers of their own urine. Oh. Sorry. That might be oversharing, but you'd laugh if you were one of us.).

Bones is on and I have to Skype with my girls so I'm going to wrap this up. But those are my thoughts today.

The Ragamuffins Demand to Know...

2011-02-15T19:59:00.000-08:00

Days 1 and 2 of testing are over. I finally got to meet the amazing Dr. Pacak today. He's very much a pheo-para celebrity, and totally deserves to be. He reminds me of a benevolent ruler and it makes me smile to see that while he calls the shot and knows the BIG PICTURE he trusts that the details will be taken care of by those who work with him.

The NIH is huge and overwhelming. I feel like I've been lost for two full days, but I've gotten very good at asking people for directions. Maybe by the end of the week they'll stop pulling out new places for me to find and I'll feel oriented. I doubt it though.

We got some preliminary results from some of the tests today, but they were very preliminary. We don't really know what they mean yet. I have a fine needle aspiration scheduled on Thursday for the nodule on my Thyroid that I'm not looking forward to at all and the date of my surgery is apparently fairly 'fluid.' So... who knows when exactly it will happen, but certainly (at least I sure hope so) sometime next week.

Ms. Lainey is very, very fussy in the evenings. Overwhelming testing all day plus fussy baby at night makes for tired Mommy (and Daddy).

We might get a chance to get out and explore a little tomorrow, or we may just rest. Unless something changes I don't have anything scheduled.

I should tell you all what a Goobie-head I looked like in the high-water pants I accidentally picked out to wear for scans. Let's just say that they so didn't work with the shoes and socks I had to wear. Oh well... No metal grommets = made my life easier. So glad nobody from "What Not to Wear" came and tackled me. THAT is one of my biggest fears (and probably with good reason).

Tiggers don't like MRI contrast. It makes me need to sneeze and cough all at once about 30 seconds after it's injected. It wasn't anything major and didn't even interrupt the testing too much, but was interesting nonetheless.

Also hep-locks and needy babies do not good bedfellows make.

That's all I got today... There are more stories, but I'll have to tell them later or in person. I'm just too exhausted right now. Hopefully I'll have more pep in my step (or at least in my blog) here soon. Until then, keep sending up the prayers. They are both felt and needed. So thankful for all of your love.

Day 1 of Grand Adventure: Playing Pac-man and Getting Settled

2011-02-13T16:32:00.000-08:00

So... the adventure has already been adventurous!

The flights all went well yesterday. Lainey was a champion flyer. And the airport food we found along the way was actually mostly quite tastey.

On the final descent into D.C, we snaked along the Patomac and were giddy to have an amazing view of the Washington Monument, and Jefferson and Lincoln memorials. That was just a treat.

We'd been set up the day before to have a Taxi come to get us from the airport and bring us to the family lodge even though we were coming a day early. When we landed at 1:25 am, we headed to the baggage claim and looked around for the taxi and driver. But said taxi and driver were no where to be found. Andrew asked a few different Taxi drivers if they were there for us and they all said no. Our flight had come in a little bit late, so I guess we just missed him and perhaps he there was a snag with the cell phone number or a miscommunication about the flight information. Whatever, we didn't have a ride.

So Andy found us a Taxi willing to drive us from the airport to the NIH. The ride was.... interesting. Our driver was apparently feeling the effects of the late hour and he was also apparently a fan of Pac-man, because he seemed to think the dotted line was something to lead him along and not a barrier to stay inside. Also, he nodded off a couple times at red lights. On a more positive note we again got to see the beauty of the monuments at night as he drove through the city.

The driver also wasn't hugely familiar with the medical center and we had quite a time finding a security gate through which we were authorized to enter. We finally arrived at the right one and didn't expect what we found there. Since we're Navy folk we're pretty accustomed to going through security gates, but as soon as the Taxi pulled up and the windows were rolled down we were ordered to get out of the car. No pleasantries, or explanations, just "GET OUT OF THE CAR." Eventually Andy pleaded with them to explain a little better since we were all very tired, and one of the guards softened a bit and let me sit down in the car while the ID situation was taken care of and the car was searched. It was a little unsettling, but I'm sure not representative of the personalities we'll encounter overall. It did make for a memorable entrance!!!

I trust that our driver got out of here ok. I hope so. I'm pretty certain he cut us a deal on the rate which makes up some for the.... somewhat nerve-wracking ordeal of a drive.

Today we mostly have lounged around and rested up in the family lodge which is JUST BEAUTIFUL. The
wonderful, and amazing Shauna stocked us up with some groceries in the kitchen without our even knowing it until we got here so we didn't even have to go out for food.

We'll hit the ground running early tomorrow morning and find out what this is all really about. I'm anxious, very anxious but even though I've done my share of hand-wringing today, I've also been blown away by the blessings that God has provided for us even down to the details of things. We will get through this.

Leaving Tomorrow

2011-02-11T22:51:00.000-08:00

As I said on Facebook, surgical pain won't be anything compared to being away from Carolyn and Abbie.

NIH came through in more amazing ways today.

I'm so tired I feel it behind my eyes.

I'm so nervous that when I sleep I wake up exhausted.

I'm sure that we're going to the right place and part of me is excited about seeing just what it's all about.

My Uncle Stan and Aunt Mary Ann reminded me that journey requires faith. This feels like a huge leap of faith. I feel confident in our decision, but astounded that I'm flying 3000 miles tomorrow, going to a medical facility I've never laid eyes on, and having a surgery that I never would have dreamed I'd need a year ago.

So... We head out for Tomas' Coming Out Party tomorrow. I'm buckling my seatbelt, leaning hard into God, and hanging on for the ride.

Here we go! *Wheeee*

Sobered

2011-02-07T17:59:00.000-08:00

A week from now I'll have gotten to NIH, settled in, and gone through my first day of tests and scans. A week from now there will be less 'fear of the unknown.' A week from now I'll have met the amazing people who have really had my back from 3000 miles away this whole time. A week from now a new chapter of the adventure begins. Maybe it will be my only chapter. Maybe this is only the beginning.

As I've done my pathological googling and found other people dealing with tumors of this kind and the fall-out that can happen as a result, I've read the stories of quite a few people who've gone through incredibly difficult journeys. I've found people with the SDHD mutations which cause the tumors to recur and people with SDHB mutations which cause the tumors to metastasize.

One of those people was Laura Becktel. She fought hard and long. She had tumors on her adrenal gland/kidney, in her neck (at a slightly different place than mine), and then metastases to her bones, skull, and liver.

She gave her life in the fight against the cancerous form of this disease today. I am sad and I am sobered to know this. I only knew her through what I read of her story on various websites, but I know she fought courageously and then shared her story and joined with others to fight the rare and mysterious nature of Paragangliomas and Pheochromocytomas. She banded together with other 'rare birds' so that others who came along later wouldn't have to look so hard to find one another and to find resources to get the best treatment possible. It's because of Laura and people like her that I was able to find out about NIH so soon in my journey. It's because of her and others who spoke out and banded together that I found avenues of support from people who've gone through similar diagnoses. From what I read of her story, these support resources and avenues of information were not so readily available for her just a few years ago. I'm so thankful for the impact that she made with the work that she did.

It's scary to see the reality of this disease in such a raw and tragic way just as I am finally about to embark on the part of the journey that will bring us both treatment and more answers about what we're dealing with. I know that her story is not my story. I know not to jump ahead and assume the worst. But it makes me take a deep breath to hear this news, nonetheless.

I don't know what we'll learn after our trip out East. Maybe we'll find out that the likelihood is good that we won't see any other tumors or complications further down the line. Maybe we'll find out that this may well be only the beginning.

Regardless, I hope to go through this with even a fraction of the grace and courage that Laura had as she fought for her own life while battling for the rest of us. I wish comfort for her family and those who loved her.

St. Groundhog

2011-02-03T13:29:00.000-08:00

I started this post about how our trip and everything that is (holy cow!) about to happen just felt like it was just looming. It felt like this big, oppressive black thing on the horizon that I was just trudging toward. To be honest, I've had more than a few 'moments' this week. I've stressed about big things and little (expired licenses, defunct computers losing precious photos, surgery, pumping, fear about the details). I've had some pity parties where I wondered when whoever was depressing the 'hard button' on my life would let off and switch over to the 'easy button.' I've been grumpy and moody and it's probably a good thing that my husband's shift change makes him sleep all day because he, I'm sure, wouldn't want to be around the nutty anymore than he already has to.

Then my Illinoisan family and friends got absolutely buried in snow. And I worried for them. And I worried for me because my Daddy and our wonderful Shari are about to head out to be with us and watch the big girls while we're gone and I want them to be safe and get here! And I thought about winter and bleakness and being buried. Ironically all that was going on during Groundhog's Day.

Carolyn came home toting an adorable groundhog craft yesterday. It was a Styrofoam cup colored with grass and dirt colors and a groundhog on a Popsicle stick that poked out of her artistically rendered burrow. Her teacher asked me if anyone had heard what the groundhog saw and I was glad to report that he had not seen his shadow (perhaps he couldn't get out of his burrow to do so with all the snow piled up, but let's not split hairs here!) and that the official word was 'Spring will be here early!' And I laughed it off like I normally do when it comes to silly holidays.

But it all percolated and I thought of everyone who really, really wished for an early spring --especially the lot of you who are buried in the white stuff. I thought about how I'm *not* buried in white stuff, but I have felt a little buried especially by looming things on the horizon. I thought about darkness and light as I am wont to do from time to time when I get all thinkative and ruminate too much.

I considered 'six more weeks of winter,' which isn't so long even if the groundhog is wrong this go-around. I considered Carolyn's birthday and how it would be right after we get back from the surgery. I considered tulips.

I thought of something beautiful: WINTER ENDS.

IT ENDS!

And trials do too.

Tomas WILL MEET HIS END! Soon!!! Yes, things are finally really happening and that is overwhelming and it's a lot to walk through, but it's TWO WEEKS to walk through after 8 months of waiting and preparing and wondering and worrying and then this leg of the journey, at least, will be over.

Admittedly a good chunk of my wondering anxiousness is about what we'll learn while we're out there/when the results are all back. What exactly are the implications for our future? Is this a one-time deal? Do I have a genetic mutation? Is it the one that predisposes things to this being cancerous? Is it one that would suggest that I'll have more of these boogers to contend with? Do I already have another one lurking? And even worse--if those things are true, did I give this to my kids? Or to their kids (a question which flicks through my mind when people say things like, "At least it's YOU going through this and not THEM." And yes I am glad that this time around it's me, and what's more I'm praying that it won't ever have to be them, but if it does I want us to be as armed as possible to find and fight the sucker early and fast).

BUT, this part will be over. I'll never again go to the NIH for a study/treatment "for the first time," even if I do have to go back for one reason or another.

Best of all, at the end of this journey or this leg of it at the very least, I'm coming home and baking a birthday cake for my Carolyn with SIX candles in it. A month after that we'll go revel in the colors of the joyful daffodils and happy tulips. The trees will begin to bud and the rain and gray will give way to sunshine and short-sleeved days. We'll hit the beach more often and I'll dig my toes into some sand.

The springtime always come. Winter is just a season and it comes around more than once, but always, always winter ends. It gives way to flowers and brightness and things that make me want to skip and frolic. I said to a friend who is in the midst of her own dark winter that when I'm in that place I remind myself that I'm in the middle of my own resurrection story. The darkness is real. It feels oppressive and I can't always talk my way out of my feelings (nor should I always do so because I firmly believe that it is ok and vital to call the bad things bad). Even so, Easter comes and light and rebirth of joy.

So maybe scary things are looming. Maybe there is some darkness at this tumor-y time. I know though that on the other side of this deal I'll lift my face to the sunshine and jump in puddles and tiptoe through tulips and bake birthday cakes for big girls and maybe things won't all be well yet, but it will be spring. And Tomas....?

Tomas will have left the building!!!

(Don't let the door hit ya Tumah-boy!)

P.S. Though I AM looking forward to spring and shifting my focus to that time, I reserve the right to still have my 'moments.' ;)

Nervy Nervous

2011-01-09T20:39:00.000-08:00

I'm starting to get rather nervous about our upcoming adventure.

Don't get me wrong, I'm looking forward to losing Tomas along the way, but I'm still nervous (now that I think of it, it's kinda like Mom and Dad always trying to get people who came to visit to take a cat with them, and when people refused saying, "You only have to take him half way!" I'm so just taking him out there and leaving him!).

I'm not afraid I'm going to die or anything.

Or maybe I kind of am, but not in a big way. Just in the 'All surgery carries with it inherent risk,' disclaimery kind of way.

(Now my Dad is totally freaking out because I said the 'd' word. Sorry Dad. I promise I won't die. I won't. Really. It's just the disclaimery kind of fear, the flukey kind. You understand, right Dad? )

Ok then.

Where was I? Oh yes... I'm nervous. Becuase I'm going all the way across the country to have kind of a big surgery (although it should only take a few hours... and I could be discharged in just a day or two.... Isn't that amazing?!) But there are all these details to work out and it's so far away and I worry about all kinds of stupid details like where to park.

(Good news--we probably won't have to worry about that one... Just like.... how to navigate using the Metro and Taxis more likely. So that's something, right?)

I'm a Navy Wife so I'm plenty accustomed to 'hurry up and wait,' but it's been... 7 months y'all. 7 months that this has been there just hanging out. And we've talked about it and theorized about how to get rid of it, and now I'm sitting with just over a month left before all that theory becomes reality. Now that's a shift for my paraganglioma AND Paradigm.

Plus, Tomas is growing. My wonderful and amazing doctor who delivered Alaine confirmed it at my 6 week check up. Tomas is fatter. I joined Weight Watchers for the New Year, but I doubt it'll help him any. That's disconcerting. All this time has passed and letting tumors just sit for a long time isn't usually common practice for a reason. He's bigger.

That's disconcerting.

And I'm worried about what we might learn--do I have a genetic mutation? If I do, what does that mean for me? What does that mean for my girls? What does that mean for their kids?

We've got multi-generational worrying going on here people. Seriously.

So... in the face of all the nervy-nervousness, let's offset it a bit. Let's find some fun. What can I look forward to in all this?

1) This is the closest Andrew and I've come to a 'getaway' since our honeymoon. At 7.5 years of marriage I'd say we're overdue. And it *is* for Valentine's Day after all! Sure the scenery will be sterile medical equipment and high-tech imaging machines instead of palm-trees, but we'll make the best of it. Lainey will too.

2) A Plane ride with JUST an infant AND a husband to help will likely feel down-right luxurious.

3) This will be the perfect opportunity for me to really get a lot of use out of the Kindle Andrew got me for Christmas. As long as I don't break it. Again.

4) Potential Sightseeing. I'm sure between bloodtests, and scans, and surgeries there'll be plenty of time for me to tool around. No really. We might at least have a weekend that's relatively free and we just might go see some fun things.

5) I might get to see some wonderful folks from that part of the country! THAT would be fun.

6) I'll get to take a break from the aforementioned Weight Watchers plan during my testing week. Because I'm NOT counting points during the days that I'm not allowed to eat chocolate, or anything containing vanilla, or anything spicey, or any fruit, or anything that tastes remotely better than cardboard. And I'll be doing a few fasting-required tests too. So... see! No points-counting!

7) After all those tests that require me to stand on my head before ingesting anything that might potentially taste good, being able to eat normally again will feel fantastic!

8) Hospital food. The grub at UW was tastey, we'll see what NIH's culinary specialists have to offer (correction: the food at UW was great as long as you were admitted, that is. The discrepencey between the actual patient food and the everyone else food at UW should really be it's own blogpost. And now I'm out in the outer-Mongolia regions of off-topic again, aren't I? this happens when I get nervous).

9) I'll finally get to meet the amazing people who have been taking care of me from afar.

10) I might get to meet other people with tumors as weird as (or weirder even!) mine!

11) Sympathy points on the plane-ride. Not only traveling with an infant, but ALSO traveling to and from a major medical procedure! Maybe I'll get extra peanuts from the flight attendants!!!

12) ANDY will have to get up with the baby in the middle of the night. Especially on the days I'm pumping and dumping. This might actually be a time for me to catch up on some rest.

13) A new experience in which to trust God. This should be #1. It is. Just pretend I put it there to begin with.

14) I'll get to see my folks, and they'll finally get to meet Lainey before we fly out and after we get back. This should be #2. Pretend again.

15) This'll be a great excuse to watch my favorite TV shows on DVD. West Wing, Vicar of Dibley, Bones, The Big Bang. Oh yes. There will be marathoning of great shows.

16) Having stitches in my neck will break me of touching my lumpy spot. Which will be better for my skin in that area.

17) Soon the lump will be gone.

18) I'll get a cool scar. I can perhaps impress small children with it. They like cool scars.

19) Lots of new people to show Alaine off to. Oh she will be the belle of the ball.

20) And let's not forget people--it'll be GREAT blog-fodder.

21) I almost forgot--as mentioned above--likely no worries about where to park!

Alright, alright. See there are plenty of silver-linings and plenty of lemonade. There might even be plenty of silver-lined lemonade, but I might be a little suspicious of drinking it...

And there is, as always, so much to be grateful for. I'm doing my best to choose to see the miracles here.

But even so, the reality is I have moments... and sometimes half-hours when I'm scared, when I'm nervous. I guess I shouldn't project into it so much, but it's just kind of a big thing coming up with a lot of variables. It will all work out fine. I'll be fine. God has it all under control. Whether I end up fine or not that's true, really.

But still. I'm a little nervy nervous and sometimes afraid of the dark even with all I have to look forward to.

Ah.... Romance! And THE date (a calendar one)

2010-12-18T09:28:00.000-08:00

Well, we seem to be following a 'let's do our major life events in contingency with Holidays,' theme. First, Alaine was born on Thanksgiving.

We got our date for the study at NIH and the subsequent surgery. We'll report bright and early on Valentine's Day for testing for the protocol, with the surgery to follow the next week.

Andy's first response was, "Nice! A cheap date." Then he thought about it and said, "No.... NOT a cheap date. NOT at all...." ;)

I'm rather relieved to not be doing things on my birthday as I anticipated. The grand 3-0 can blow in quietly with balloons rather than major surgery. I'm also glad Alaine will be a little bit bigger before we head out for such an adventure (she'll be coming with us. The big girls will be staying with Papa and Nonna here at home).

It's good to have a date and settle in. Now I feel like I can just do Christmas and enjoy. Just hoping that there aren't any 'major life events' waiting to jump out and surprise us for Christmas. I'm ok with having a sweet, quiet, family Christmas. One that's completely health related surprise or curve ball free would be extra wonderful

I'm sure Andy and I will find a way to make this little trip all feel very romantic in the spirit of St. Valentine. Maybe we can have a candlelight dinner in the cafeteria? A stroll hand in hand down the corridors of the National Institute of Health? Oh the possibilities...

Really though, getting this thing taken care of so that I can go on to spend many, many years with the love of my life and my beautiful girls without Tomas the Tumah sounds like the best Valentine anybody ever gave me.

The REAL good stuff--Alaine

2010-11-30T16:50:00.001-08:00

There was this perfect moment on Thanksgiving morning right after Alaine was born. The labor was over. The snow was falling. And I looked over into the isolette that had been sitting empty for 36 hours and saw this beautiful baby, wide-eyed, round head, pink cheeks. Perfection. A few moments later, she was laid on my chest and I was wholly overwhelmed with love.

I didn’t believe throughout my entire pregnancy that it could be real. That I could really have a perfect little person growing inside of me. Our miscarriage last year shook my confidence, and then the discovery of Tomas and the myriad of other ‘not quite right’ health issues that cropped up only shook me more. The only time that I truly waited with excited expectation was during and immediately following ultra-sounds. The rest of the time a large part of me was in a state of protective ambivalence. If I didn’t think about what was at stake, or at least if I didn’t fully grasp the reality of it, maybe if I lost it, it wouldn’t hurt so much.

As we prepared more and more for the birth of baby, taking precautions that startled me and made me face the reality that this pregnancy was unique and that this labor and delivery would have to be too, made me feel more secure in some ways, and more frightened in others.

And then there was our luck that ran through to the end.

We were scheduled to go in to begin the induction on Monday the 22nd. I got myself as mentally ready as I could for that, and when Monday dawned, I had on my game face.

Then it started snowing…. And snowing…. And snowing. It didn’t stop. We read weather reports. We watched news. I called my doctor and asked what to do. The first answer I got surprised me: Just wait til next week. Next WEEK?! Didn’t we have a PLAN here? I wasn’t sure where my doctor was coming from. We’d had this plan the whole time—Induce early. IT was a plan that I had to work pretty hard to wrap my head around as I got used to the ‘wait and go late’ process with Carolyn and Abigail.

When I was finally able to speak to my doctor I was relieved that she told me that they wanted to get me in as soon as it was safe. The plans and the reasoning behind them hadn’t changed, but our physical safety on the road to Seattle was also being taken into account. She said if we found a window, to come in.

Tuesday it was clear and cold. By the afternoon, even the unpracticed methodology of the state of Washington’s DOT was able to clear the roads enough for us to feel ok about going in. So we did.

On the way, Andy noticed the steering wheel was pulling to the left. When we got to the parking garage we saw that we had an extremely underinflated tire.

That’s right. We basically got a flat tire on the way to the hospital.

We went to the cafeteria to eat some really bad cafeteria food once we got there to give L&D a chance to get ready for us and then we were admitted to our room. All of the stress got to me at that point. The room didn’t feel right. My gown didn’t fit right. Nothing felt comfortable and I knew I was going to be there for a while and I sobbed. Andy got me put back together and I got my head back in the game, but there for a second, I was beside myself.

The induction…. The induction was awful. Maybe I’m a weenie, though having gone through two previous births with no meds at all, I don’t think so. But it was awful. They placed the medication that was supposed to help my cervix ripen and almost immediately I was in pain. I also started having contractions. I had them all night the first night. I was able to breathe through them, but there was no denying that they hurt and they most certainly FELT like labor to me. I had them all day the next day and then on into the evening before it was officially deemed that I was ‘in early labor.’ The whole first 24 hours, I was convinced I was going to be sent home. I wasn’t making progress (I kept thinking, “I never make progress, how will we know if this is any different than my other ‘early labor processes.”). I asked question after question of nurses and doctors about whether my body could do this given the way it normally labors. I relied on the gentle counsel of the labor and delivery nurses who took care of me—and all of them were superb. They listened to my anxieties and reassured me over and over and over again. But mostly. It just hurt. And it didn’t feel like it hurt for a purpose since this question of ‘this might not work and we might send her home’ still lingered.

The evening after the 2nd dose of Cervidil was placed things started to pick up. When I finally decided to be checked I was at 2 centimeters and all of a sudden people started talking as if I was having a baby in the immediate future and not just in shades of vague possibility. I was told I could have the epidural placed soon. People started placing bets on when I’d deliver. It was go time. And THAT… THAT was the best pain medicine in the world. I mentally shifted from the place I’d been in since weeks before the induction of not being able to see past the beginning of the labor, to imagining meeting my baby in a matter of hours.

Also at that point, the pain meds that I had cheerfully foregone the other two times around were sounding pretty darned good.

The delightfully Austrian anesthesiologist was on call that night and he was the one who’d taken my case on initially. He and his resident—a guy with a scraggly beard who lit up when he heard Andy was in the Navy, and spent the time it took him to place the epidural swapping sea stories with Andy—put that part of the plan in place and I came to find that I rather liked the epidural. It sure beat the 24 hours of pain and contractions I’d had up to that point. It was also one of the key ingredients of the plan drawn up by my fabulous and amazing doctor. Epidural = less pain and stress for Mommy = hopefully suppressing any hormonal surges that Tomas might get kicked into from those factors as well as making it more likely that I could labor without pushing (another factor in hopefully keeping Tomas neutralized).

I actually slept on and off for a few hours after I got the epidural. I could still feel the contractions, but they didn’t hurt, and for the first time in the whole process I could and did relax. When I woke up, I looked outside at the snow that was falling and piling up and mused at what a beautiful (early) Thanksgiving morning it was.

Things didn’t pick up super quickly, and in fact, my contractions actually started getting further apart rather than closer together, so they upped the pitocin that they’d started when it was decided that it was ‘go’ time. I was worried that we were headed backwards and got agitated about my progress and started fretting about different possibilities. I was checked again and was at 4 cm. It was hypothesized that maybe this time I would labor ‘like normal’ without the super-fast progress that I normally experience, but the doctor also reported that my bag of waters was ‘bulging’ and that once that broke things might speed up. Sure enough, she left and with the next contraction I felt pressure and then my water broke. In the time it took for the doctor to make it back to check on me again, I’d progressed to 6 cm and the nurse said, “20 minutes from 4-6—if you do that 2 more times, you’ll be complete in 40 minutes.

And that was when I showed them all that I was serious about my labors progressing quickly after a certain point. Much less than 40 minutes had gone by when I knew I was fully dilated and when I was having to suppress the urge to push. The chief resident commented, “So THIS is what all the hype was about—You weren’t kidding about going fast!!!” My team was READY though and in seconds the room was full.

And I do mean full.

My nurse, who’d been staying pretty close for most of the ‘go time’ scenario was soon joined by another nurse and the resident who’d been checking on me all along, as well as the chief resident, and at times the attending on call (my incredible and amazing doctor was being paged like crazy at this point). Two pediatricians came in, along with a nurse for baby. Way back in the back of the room, Austrian Epidural guy and Navy doctor Epidural guy casually lounged around. Catching sight of them caught me off guard a couple of times as I would puzzle through why they were there and remember that it was because I had a crazy tumor and they were there in case of a hypertensive crisis.

Throughout this time, my nurse—who was absolutely incredible, by the way—was talking me through the contractions that I was having and helping me to resist the urge to push. In case you were wondering, NOT pushing during labor is, in my humble opinion MUCH HARDER than pushing ever was for me. I was also given one more really special, eleventh-hour cocktail of drugs to keep me as pain free and relaxed as possible.

Finally my doctor slid into the room, and the party really got started. I was directed through a couple of tiny pushes. I remember hearing the chief resident comment on how strong my uterus was and feeling a little proud. And then he got the forceps and with the help of the resident who’d been with me all night, they delivered Alaine. I could feel her moving right to the end and could feel her move down with each contraction which was really cool considering I could feel those sensations but without pain.

She was born, and there was a lusty cry, and I was done and she was here. The beautiful moment of seeing her perfect little body laying under the lights in the warmer came to pass and she was placed on my chest.

I’d worried for months that because of my ‘protective ambivalence’ and my focus on addressing Tomas, and just all of the emotions and twists and turns we’ve been through in these last nine months, that I wouldn’t feel that rush of love immediately. I worried that she would feel foreign and I would feel detached and those things would break my heart.

That didn’t happen though. I was and am swept up in rapture and delight at this beautiful little creature. Her name means ‘little rock’ and she has been that. She is a steady point of joy for me. I am so very glad that she is here and that we’re beginning the amazing journey of life with three exquisite daughters. She IS real. The joy of her being is every bit as real and consuming as the scary and hard things have been up to this point. I’m relieved to find as much reality in the good and pure and wonderful which encompass her joining our family, as there has been in the hard and scary and unknown. She is real and substantial and I love her.

NO MORE INTERESTINGNESS

2010-11-22T12:13:00.000-08:00

*sigh*

We're supposed to go in to Labor and Delivery this evening for the induction.

I came down with a head cold this weekend....

And...

It's snowing. It never snows here. It's sticking. It's accumulating. Quickly. When it does snow here, it rarely sticks for long. It's dumping from here to Seattle where I'm delivering. And it's supposed to continue snowing all day and stay cold which means it's not going anywhere.

It's a two hour drive to the hospital.

I'm waiting to hear if they're going to postpone the induction or not. I'm hoping that they do. On the other hand, even though I typically go late, I'm nervous that I'll end up going into labor on my own and need to get there anyway.

I'm all for looking at life as a grand adventure. And I took my pastor's message seriously yesterday--I'm trying to use the flash light of gratefulness to look at my life rather than seeing everything through dark glasses (which is why I went outside and made snow angels with the girls).

But it's time for things to not be interesting. It's time for a clear path. It's time to get baby here safely with no more curves or interesting turns of events.

Can I get some people praying on that one, please?

And Then I Fell...

2010-11-18T16:43:00.000-08:00

I was undone by a yellow doll-house accessory. A teeny tiny table or some sort of thing. The girls were upstairs dripping dry from their bath and waiting for the brush that I'd come down to retrieve and I stepped down on a "Holy cow that's sharp," thing and I twisted around, and somehow managed to land on my rear end and not my belly, but I came down hard enough for it to hurt, and for the wind to be knocked out of me, and for me to know that I needed to call Labor and Delivery and I reallydidnotwanttohavetocallLaborandDelivery.

My first thought was, "Ow. And Oof. And Oh." My second thought was, "Dang it, I have to call and what are they going to tell me to do?" And my third thought was, "There's a football game tomorrow at UW.... My doctor will be out of town.... This cannot go awry."

UW's Labor and Delivery predictably suggested that though I hadn't fallen on my belly and though as of yet I wasn't contracting or bleeding, that I should come in and be monitored. Which really wasn't a good thing because after all they're 2 hours away and Andrew was on watch. And how in the heck was this all going to work?

All of which I said to the very nice L&D nurse and she acquiesced to the possibility of my going in to our own Labor and Delivery on base for monitoring with the plan to head south to Seattle if anything looked peculiar. So that's what I determined to do. Then I just had to call and coordinate that with our L&D, find someone to take the kiddos, and call my husband on watch and get there. Which.... all really wasn't that easy.

After a couple of phone calls, I found a friend from church to come be with the girls who were all ready for bed (but had, with almost no prompting from me, also gotten ready for the contingency of coming with Mommy by putting on pantsy pajamas, and shoes and socks and packing their own quiet bag. I was so blown away by their responsibility and concern for Mommy last night). I called Andrew and he made it home in such a short time that I don't want to think about how fast he must have been going. And with everything in place we went to the Labor and Delivery on base.

When we got to base, Andy realized he didn't have his military ID OR his drivers license. So we showed the guard mine and tried to explain. Except they didn't want to let us explain. Finally Andy said, "PLEASE LISTEN. She's 38 weeks pregnant and we have an emergency. We need to get to Labor and Delivery NOW. I left my wallet somewhere in the hurry to get her here because we have an EMERGENCY."
"Well.... do you have a drivers license at least?"
"NO, I LEFT MY WALLET SOMEWHERE--SHE NEEDS MEDICAL CARE."
"You really shouldn't drive without your Drivers License, you know"
"EMERGENCY."
"There's no need to get loud, sir."
"Look--Do I have permission to enter the gate or not?"
*Dubious glances exchanged between the two frustrating gate guards, and then finally a relenting sigh*

Seriously?!! I know they were just doing their jobs, but still... Seriously?!

That little interlude aside (and I guess it's a darn good thign we WEREN'T headed to Seattle with a wallet MIA, really), we got to L&D and they hooked me up to a monitor. Baby hadn't been moving. I kept waiting for a reassuring kick or something as I waited for our friend to get to the house, and during the ride, and as I settled into the bed at the Naval Hospital. I felt pretty sure that she was ok , but I had felt hardly any movement since my butt hit the floor, and that wasn't entirely reassuring.

They put the belts on my belly, and there was her heartbeat. And that was good.

And then we watched the monitor. The nurse came in and watched with us. And she explained that she hoped that her facial expressions and demeanor didn't make me feel unwanted, but they REALLY, REALLY, REALLY did not want me going into labor on their watch, because they REALLY, REALLY, REALLY weren't comfortable having a woman with my particular oddity give birth with their limited capabilities should things go wrong. And again I couldn't believe that I'd almost given birth at this hospital with no questions asked by anyone.

She was very nice despite her caveat about where this baby would ultimately be born. She chatted with us casually about her kids and ours and the shared camaraderie of being female and putting up with the discomforts and of pregnancy, but it was also pretty clear that she wasn't taking any chances with us.

Baby looked great. Heartbeat strong, and now she was trying to kick off the monitor. Also, she got hiccups.

I wasn't showing any signs of placental abruption, which I learned was the big concern with a fall. Even one not involving a belly. But I was having contractions. More than I expected to in only a few hours. I didn't start to feel them until I started tuning into the monitor and then my brain recognized the sensation and suddenly I did feel them. The nurse seemed to want to monitor that a bit more.

So we waited another hour. We watched The Princess Bride which was sitting on the T.V. I tried not to be hyper aware of every baby movement and every contraction by reciting the movie along with the characters since I essentially have it memorized. Somehow, though, just sitting in that uncomfortable bed, strapped to this contraption, wondering.... and wondering.... made me feel everything a little more strongly than normal. And I got progressively more uncomfortable, and increasingly aware of my contractions, and more and more nervous.

Eventually, after checking my cervix, they decided they could send me home. I wasn't going to get so serious about labor that night that I couldn't get myself to UW, but that only made me more nervous because... My doctor was out of town tomorrow, and there was this huge nationally syndicated Football Game happening and all was going to be messed up for hours and what if I went into labor and couldn't deliver with my doctor and someone else who wasn't as amazing took me and things all went wrong? Or what if I went into labor and we got stuck in traffic and the worst happened and we were stranded? Or what if...

I didn't call UW with an update because I desperately did not want to face the possibility of them saying, "Well.... since we have this game tomorrow, maybe you should come in if you're having contractions."

I'm tender today. My belly is tender. I don't know if it's all in my head, or if it's maybe because I twisted to protect myself so quickly when I fell, or for some other reason altogether. I'm walking gingerly everywhere I go. And I'm scared. I'm afraid to sit down wrong, or step wrong. I don't like realizing that I'm having a contraction, whereas normally I'd be glad that my body was doing SOMETHING at least. I'm afraid of lurking dollhouse furniture, and carrying laundry baskets.

Because last night I realized that I'm really just so far away from where my care is. And my case IS unique. And in an emergency, there are going to be some logistics involved which will slow us down. And that reality is scary.

I'm trying so hard not to be rattled by it. I'm trying to take it in a stride. I'm trying to hang onto peace. Lots of people fall when they are pregnant and probably some of them don't even call Labor and Delivery and maybe I shouldn't have either because maybe I wouldn't be so freaked out. But....

I was undone by a piece of doll-house furniture. A piece of doll house furniture and a football game and a two hour drive and the reality that my situation is unique and while everything is really most likely going to be just fine there are extra variables at work. I realized in a new way that even though everything was ok yesterday, that I feel very, very vulnerable. Now I'm just really ready to have the uniqueness of this delivery done and over with so I can focus on my baby for a little bit, before I get scared again.

My friend, Pam, got me out of the house today. We got our hair cut. Nothing perks me up like a hair cut. I'm feeling better by increments, and by tomorrow morning I'll be back to making jokes, and cycling through mania and gooeyness and regular old nerves again. Besides, tomorrow there won't be a football game and if I need to get to Seattle's L&D unit it'll just be the normal pain in the rear 2 hour drive. A regular night of sleep without coming home at midnight will do me good too. I'm ok, and I AM sure that all is going to go well, and we're going to meet this little girl in all her sweet chunky-cheeked glory next week with little fanfare except for the kind that all newborn babies deserve.

How about this though: Until then--keep the dollhouse furniture away from me.

Conversations snatches at the Roseberry's House Lately

2010-11-17T10:36:00.000-08:00

"Honey.... My feet are swollen and my back hurts and I'm tired, and my belly is huge, and I have a tumor, and I just feel SOOOO pregnant.... Could you bring me a glass of water?" (At least in a few days he'll only have the tumor part to contend with, right?)

"Holy Cow. We're going to have a baby next week."

"I'm nesting... Can we get these discs of my MRI and ultrasounds burned so I can send stuff to NIH." (I've never nested like that before!)

"Holy Cow. We're going to have a baby next week."

Andrew: "Honey... Are you ok?"
Me with flapping arms: "NO!"
Andrew: "What's Wrong?"
Me with flapping arms: "Oh... I dunno... I'm having a baby next week and I have a lot to get done and we're going to Seattle to have it and the doctor doesn't think my body will do well with the induction the first time and I'm terrified and I have a tumor that's being removed on the other side of the country sometime after the baby gets here.... DON'T I HAVE A RIGHT TO FREAK OUT, DANG IT?"
Andrew completely in control: "Of course, honey."

"Holy Cow. We're going to have THREE KIDS NEXT WEEK?!"

"The doctor says this baby is going to be huge. I mean huge. A huge baby. I'm having a huge baby."

"I'm having a BABY next week?! Why didn't anyone tell me I was gonna have a baby?! I don't think I know what to do with a baby anymore. We're toast!"

"I can't wait to meet her and find out what kind of a personality she's going to have and see her squishy cheeks! Oh... She's gonna be huge."

"We're having a BABY next week! Awww... I'm so excited!"

Yes.... I am alternately manic with preparations, amazingly calm, and totally freaked out this week. The doctor prepared me at our last OB visit that the induction process might take a couple of tries and that I should prepare myself to see a lot of UW next week. I'm trying to gear up mentally for that. In the end I know it'll be worth it to meet this little girl. I try to keep thoughts about the reasons for being in Seattle at bay. I don't even want to entertain the idea of "something tumor-related happening." I'm just planning on them not happening.

In my less together moments I find that I get overwhelmed by the thought that all the things that we've only been planning for up to now will start becoming reality this week, and while the reality of baby girl will surely be wonderful and miraculous, the realities that will come after and in contingency with a very small baby girl are a little daunting.

We keep plugging along though. We ARE excited and delighted about next week (as well as overwhelmed and terrified as you always are when you prepare to bring home a new wee one). The most important thing right now is getting this newest little Sweetheart girl here safely, and that is what we shall do...

I just hope she cooperates the first time around and we can bring her home to be this Thanksgiving's Pumpkin Pie. :)

In Which Mama Bear Gets It and My Wonderful New Doctor Blows My Socks Off

2010-10-24T17:24:00.000-07:00

Well... since that last post the whole 'where will the baby come out?' discussion got a little more interesting. I started to wrap my mind around the hospital my (original) doctor had mentioned. The one that seemed so very far away for a delivery at 1 hour and 45 minutes away from us. I did what I do and I Googled it and I saw the birthing suites and read about the ICU and NICU (which I really shouldn't need, but is still the mark of a higher-level hospital) and I thought, "Ok. I can do this." This could be ok. And I started to settle my mind into it.

I went swimming with Carolyn that Friday, did some laps myself, and was feeling pretty good when I walked through the door to see a message blinking on my answering machine.

It was.... The University of Washington. In Seattle. The SUPER hospital. You might remember that this is the place where we went to visit Dr. Crazy Hair and the Grey's Anatomyesque Intern and Resident. And when THEY call YOU you know there's some business going down.

This phone call indicated that I was to call back regarding an appointment that had been scheduled for the following Monday... The person on the answering machine indicated that she and I had already discussed this appointment, but I had never talked to the woman before...  On top of that, I certainly wasn't expecting my care to be at UW. This was most certainly another curve ball.

I called back and got the pertinent information. I found out my appointment was scheduled with a doctor who follows High Risk pregnancies (Translation for the Grey's fans: They sent me to Addison Montgomery) and that I really had to make this appointment because (as if I hadn't noticed yet) we were in the eleventh hour here.

And at the word 'High Risk Pregnancy' coming from the lips of a person at UW, my Mama Bear heart skipped a beat. Of course it wasn't the first time I thought about the words... It's been on my chart for some time. It's the reason I met with the grumpy anesthesiologist at the Naval Hospital. But remember in the span of a week and a half I had gone from everyone I talked to saying, "Eh... No big deal on this delivering of the baby thing," to.... an ASAP referral to the REAL super hospital in Seattle's version of Addison Montgomery.

Let's face it, I've watched enough of Grey's Anatomy and Private Practice to know what kind of cases those doctors take on.

So.... I got a little bit scared. At the same time, the sinus infection I'd mentioned in the previous post got a lot worse... and my ear started to hurt... and all of my attempts to stay in control of my physical and emotional feelings were just plain shot. Being sick plus processing all of the new curve balls that now had to do with my pregnancy and therefore MY BABY just.... wasn't going well.

And lo.... I was a total basket case.

Monday came and Andy and I made the trek down to Seattle. I was a nervous wreck. I was a bundle of questions about C-sections and Inductions and 2+ hour drives to deliver a baby and worries about whether or not I would feel comfortable with this doctor.

Finally, we met her.

And I fell in love. Commence the newest Doctor Crush. Can she be my new best friend?

Her staff was wonderful. Her nurse hung out with us for a good 15 minutes quizzing me about Tomas and telling us how things worked when you hatched a kid at the UW.  She was delightful. And then the doctor walked in and answered all of my questions before I could even ask them.

She said at one point, "I'm going to throw you a curve ball." I almost fainted then and there because I didn't think I could handle any more curve balls especially the kind that might come from the UW equivalent of Addison Montgomery. Andrew started reaching for the tissues on the counter and I warned her that me and Curve Balls were not friends right now.

Then she said, "I know everyone has probably been talking about C-sections with you...  But I'm not sure that's the right way to go in your case. I'm not sure that would actually be LESS stressful for you and baby in the long run."

And that's when I got really Gooey-eyed about My Wonderful New Doctor.

She took us through a potential plan that would involve a planned induction (with a delivery 2+ hours away from home, there's just really no way to get around that at this point), but would not necessarily have to involve a C-section. (It will probably, however, involve a *really* good epidural and a Season or two of Bones). Now don't get me wrong, I'm NOT down on C-sections. But I would like to avoid one if at all possible because I've got a lot coming at me in my recovery period and I already have at least one and possibly two surgeries looming post baby arrival (thanks to good ole Hermione) and besides I just plain don't know what to expect within the realm of C-sectionness. I've had two non-medicated births that came about 'the more traditional way,' and I have a lot of anxiety about the C-section possibility and how I would handle it (mostly in regards to the recovery period).

This plan is not set in stone. We'll find out more about whether or not it's a possibility at our next appointment on Wednesday when we'll again see My Wonderful New Doctor as well as an anesthesiologist. The anesthesiologists hold the magic fairy dust to keep all ok in ANY strange event that Tomas might cause and they are key players to this delivery. They have to be on board with My Wonderful New Doctor too.

But just knowing that she was open to other possibilities was so comforting.

I left feeling GOOD about about going to UW for baby's arrival and feeling WONDERFUL about My Wonderful New Doctor.

Incidentally, I got a phone call from the referral powers that be at the Naval Hospital later on in the week. I had called my doctor, trying very hard not to cry, after making the initial contact with the folks at UW. I asked him why I was being sent to a Super Hospital instead of the "Medium level hospital that is closer with an ICU and everything he said I really needed." He said he'd ask the folks in referrals.

They called to explain that they'd been trying to get me in to said hospital (to which I nearly burst out with, NO! DON'T! in light of My Wonderful New Doctor) and.... They wouldn't take me. I'm too weird. I make them too nervous. They consider my oddities to be too big of a risk for them.

Then I thought--the meeting with the grumpy anesthesiologist was not so fun... And the feeling that no one out here had my back until the fabulous folks at NIH stepped up for me was awful... And switching at the eleventh hour from my doctor who has been so wonderful through this whole process is really a bummer.... And the prospect of giving birth 2 hours away is inconvenient at best and anxiety producing at worst....

BUT how scary is it that unless those questions had been asked, that I could have given birth at our little Naval Hospital when the folks down the road, which are considered to be more than a few steps above our little hospital, consider me to be too high of a risk and would only refer me up to the super docs?

At that point the Mama Bear who had previously only been scared out of her mind at the words 'High Risk' in conjunction with this pregnancy suddenly became just really grateful that I was going to the very, very best place around for world class care for this little cub and me.

There's a 99% chance that we don't need to be at a Super Hospital and that all the extra precautions and resources that will be available to us won't be needed in the least. But if that 1% fluke happens and I end up being *really* special in a not so great way, I'm exactly where I need to be.

So on Wednesday we should be coming home with a 'plan' not that babies always follow anybody's plan, Super Doc or not. We should know when the hatching of this sweet little one will occur too (again see previous statement). I've kicked the sinus infection and gotten drugs for the ear infection and the world is really looking brighter.

Mama Bear has settled in, Tomas can wait a while longer, and I'm good.

At least until the next curve ball comes flying.

Ok. Fine

2010-10-13T21:44:00.000-07:00

--Referral in for new OB. Likely hospital I deliver at will be 1 hour and 45 minutes away.

--Talk of scheduled induction because of distance from hospital.

--Talk of scheduled C-section because of extraordinarily small chance of tumor secreting hormones and a hypertensive crisis happening.

(Neither are options with which I'm particularly thrilled. If this is what is needed to get baby here safely though, we'll go with it. I'm just tired of Tomas getting to call all the shots and change all the game plans. I KNOW that if Mom and baby come through labor and delivery safely that's all that matters. But I'm tired of having my expectations thwarted and my plans tweaked and retweaked and tweaked again because of a thing in my neck that I didn't invite.)

--Not so comforting, "We're expecting everything to be straight-forward with your delivery, but just in case we need you at a hospital equipped with an ICU," discussion. Ok. Fine.

--Cold which seems to want to develop into sinus infection or bronchitis, keeps me from sleeping well at night. Makes me feel like crap during the day too. At least it's not as bad as it was over the weekend.

--Rough couple of Mommy days with kiddos pushing boundaries and practicing their howling skills (and not the howling skills needed for Halloween).

Ok. Fine. None of it is a big deal. None of it is huge.... But all of it is wearying.

I'm feeling a bit discouraged to tell the truth.

This too shall pass and I'll put on my big girl panties and deal with all of it. Because... well: what other choice do I have?

But right now, in the thick of it, I'm tired, and I don't feel well, and the little things of life seem out of control, and the big things of life seem even more out of control. And I'm just feeling a little discouraged about it all.

"O God, Thy Sea is so big and my boat is so small," so goes the prayer.

And I'll add what my good friend Piglet says, "It's a little anxious to be a very small animal entirely surrounded by water."

A roller-coastery week and why I KNOW we made the right choice

2010-10-07T17:01:00.000-07:00

It's been quite a week.

I have a cold or a virus of some sort for one thing. I haven't been sleeping well for another. That makes the head space of Val a difficult thing to navigate.

We had the fantastic news (mentioned below in an earlier post) from NIH this week that encouraged me immensely. After that I didn't expect to be thrown for any sort of loop at my OB appointment on Wednesday. After all, I had a game plan and I was on top of everything.

But there was this other bump that I'd been stressing over. The one on my belly. I presume it is this bump and it's odd location that makes people exclaim, "Oh My, You're just HUGE!!!!" upon seeing me these days--which believe me is a great ego booster for a girl, especially when those same people try to convince me I'm having twins or that my due date is off by two months.

And that bump, as I mentioned yesterday, it turns out is most likely a hernia. And my doctor thinks that most likely that hernia will need to be dealt with surgically post baby arrival. And that news... That news did not please me any.

I looked at Andy after sobbing hysterically in the Goobermobile for a few minutes after the appointment and said, "I can take the news of a Carotid Paraganglioma and go off to work. Here I am crying over a hernia?"

But really, first of all, hernias sound like something that only hairy, large men with names like Bif and large biceps should get--at least in my head. And second of all...

Um... Have you been paying attention to what's going on ALREADY after this sweet little girl makes her appearance in our lives? Things will be quite full enough thank you and I'm not really in the mood to 'squeeze in just one more tiny surgery' no matter how 'routine' it may be.

So there was that.

And then, my doctor mentioned that the anesthesiologist wanted to see me. I've given birth at this very Naval hospital two other times before this pregnancy and not once has an anesthesiologist wanted to talk to me. In fact, since my labors happen mainly within the 'it doesn't really count as REAL labor according to the intake nurses' window of being dilated to 2 cms for 6-8 (painful, contraction-filled) hours and then going from hearing 'you're never going to have this baby at this rate, woman, deal with it,' from the nurses to 'Holy cow it's time RIGHT NOW!!! Somebody put on the Catcher's Gear!" in the course of a few minutes, I've never even had time for an epidural.

But this time an anesthesiologist consult was requested. So I asked why and I was told that it's because I have a weird thing in my neck and they wanted to talk to me about what that might mean with anesthesia.

I was shuffled around on this particular consultation two days in a row. In the meantime I talked to the amazing people on my team at NIH to find out what my anesthesiologists DID need to know. That boiled down to one thing really: It is really, really, really, really, really extremely unlikely that this Para (or another one that we don't know about) would secrete hormones and spike my BP especially given my catecholamine/metanepherine levels being normal and my blood pressure being a little on the low side even with all the crazy that's happened lately. BUT it's not unheard of. Sometimes the stress of labor triggers an otherwise 'silent' para into action and when that happens a hypertensive crisis could happen. So... There was just that one little thing they needed to know, really.

After being led through a maze to find the anesthesiologist's office at the Naval Hospital today (which was... strangely in the middle of the dental wing???), and after waiting for him for 15 minutes in a hospital that was mostly deserted because of meetings, and after speaking to 3 different people wondering where he was and then waiting on him to come shuffling in, I finally got to sit down and talk to the guy. He was worried about blood flow and about my airway, which are valid concerns for a gentleman of his profession. When I used the word 'paraganglioma' he said, "Do you have documentation of this diagnosis?" And I said, "Um... Yeah." He yelled at me for not having a specialist following my case more closely and I told him that no specialist wanted me until after my baby was born. And then I brought up the issues that my folks at NIH had indicated were most valid to address. He grilled me on my cat/met levels and noted my low and stable blood pressure so far and made a 'what is with this weirdo patient worrying about things that aren't going to happen?' facial expression that I'm coming to know quite well. Then he said "If you ended up having a hypertensive crisis we could give you drugs to make you stable and transport you to another hospital more equipped for those things, but I think you'll be ok delivering here." Translation: In the (admittedly extremely unlikely, but not unheard of) event that the stuff hit the fan... I'd be toast. And this guy didn't really care.

So I came home. And I cried. And I sent an email to NIH.

And NIH called back straight away and said, "You know... You really need to deliver at another hospital," and I blubbered something about how they probably couldn't refer me out because I haven't been SEEN by someone who would recommend it given my diagnosis... And the wonderful nurse who has begun calling me 'honey-bunny' from all of the conversations we've had in a way that doesn't even really annoy me, said, "WHO DO I NEED TO TALK TO?" And I cried. And felt better. Because SOMEONE has my back.

I have really been hating being a rarity lately. I hate that when I talk to a doctor here in this state--even the super-specialists at places like UW--I am thought to be a hypochondriac zebra-chaser. I hate that within about ten minutes of talking to some of the doctors I've encountered that I can tell that they are not clear with the terminology. For instance a "Carotid Body Tumor, (which is actually a misnomer) IS a paraganglioma. And a Paraganglioma IS very similar to a Pheochromacytoma. It's the same thing, but located outside of the adrenal gland. I don't WANT to be the expert. I know very well that I haven't gone to med school. But because of that fact most of them blow off any information that I give them because after all 'they're the ones making the big bucks.' It's enough to make a girl feel completely, and totally alone with a diagnosis that is treatable but serious and has the potential to be very serious not only to me, but possibly to my children also. depending on what we find out about the genetic nature of the disease.

And that is why I am so INCREDIBLY THANKFUL for NIH and for the communication that they have been so free with and for their answering my questions and NOW being willing to talk to whoever needs to be talked to to make sure that until I come to THEM that I am seen by the best people possible.

So what's that mean on the news front?

It means that... Well, I have a hernia too. It means that there is a good possibility that I will not be delivering at this hospital. It means that we have about 8 weeks to figure out where I'm going to give birth and it means that I may be saying goodbye to the only doctor in this part of the country who has taken me seriously and advocated for me and not treated me like a zebra chaser: The Family Practice Doc. who has been following my OB care.

It means there may be a battle for a referral with TriCare, but I have faith that my person at NIH will get the right information to the right people to get me to the right place

But hopefully, ultimately it means that all will be well for the part of this deal that is supposed to be joyous and that is supposed to be about the arrival of the sweet little person growing and kicking and wriggling within me as we speak. If that part of the puzzle can be put in and put at rest, we can focus on that for the next few weeks and get into the joy part of it all before heading to NIH and dealing with the tumor part of it all.

I'm still a coldy, tired, and emotionally frazzled girl. But I AM going to be ok.

Seriously?!

2010-10-06T12:34:00.000-07:00

And NOW I have a hernia which will need surgery after baby too.

I'm naming it Hermione.

And I'm so totally done with weird lumps and issues--To WHOM IT MIGHT CONCERN.

Swirling Vortex of Chaos Meet Game Plan

2010-10-05T10:54:00.000-07:00

So it's not like we have a lot going on right now or anything.

We're just... Having a baby.

And navigating Carotid Paraganglioma-ville and other 'lumpy issues'... Which includes surgery on the other side of the country when most of our familial support system (who are being SO awesome and traveling to our side of the country to help us) are located in the middle of the country.

And then, you know... there's the *little* detail of Andrew's Shore Duty coming to an end and making the decision to stay Navy.... which means that we're preparing for Sea Duty and awayness a lot.

And well, you know... Babies don't come with game plans.

And Paragangliomas... Well their game plans take a while to develop when you are fighting for information and education and the best treatment possible.

And the Navy.... HA. There's NEVER a game plan with the Navy. At least not one that gets translated to the service members and families in question in a timely manner.

That's not overwhelming or anything. Really. Especially not with crazy pregnancy hormones and the beginning chapters of sleep deprivation (from umpteen trips to the bathroom, and heartburn at 2 am, and the mental dedication it takes just to turn over at night, you understand).

Ok, I've been freaking out just a little bit.

Today NIH called and I again had a really encouraging and empowering conversation.

And I got a glimpse of the game plan with some fantastic news: It's not going to be TWO trips to NIH. It will only be one. Scans the first week, surgery the second (maybe a little later, but still pretty quickly), and then we come home until follow-up time.

That sounds so much easier than two trips and coordinating two times away from my sweet big girls. That makes things feel like they're falling into place. And like this game plan might just be workable.

Tomas--get ready, your eviction notice is likely coming in January. We'll celebrate the beginning of my 3rd decade by getting rid of you and finding out if we need to be on the lookout for any of your relatives down the line.

A girl with a plan can look at the swirling vortex of chaos that has been frustrating me as of late with more confidence. Heck. I think I'll even level it with the famous Val stare-down. Not even Tomas is immune to that.

Oh Yeah...

2010-09-18T21:08:00.000-07:00

This post is in a couple of places. For the record.

When I went to see my doctor 7 months after Baboo came along to see if what I was feeling might be PPD, I kind of spilled my guts.

So much had happened in such a short time in the months and years previous to that day I felt like I didn’t have any sense of emotional equilibrium to compare with to I was feeling in that moment.

He assured me I did indeed have Postpartum Depression and I wasn’t particularly enthused about that. So I cried a little bit and freaked out a little bit. And tried to figure out a way that maybe it wasn’t PPD.

Then he said, “You’ve been through a lot. There’s no question on that. There have been a lot of ups and downs that you have gotten through in a very short time. And in the not too distant future, you are going to look back on this and say, ‘Hey. I got through that too.’”

I’ve said that very thing almost every time I’ve talked to another Mom going through PPD.

Since I got this crazy diagnosis I’ve been surviving. And sometimes I’ve felt good and ok. And sometimes I’ve felt scared stupid. Sometimes I’ve just felt pregnant.

It wasn’t until tonight that I thought about what my doctor said in the context of what’s going on right now. “In the not too distant future I’m going to look back and say, Hey. I got through that too.”

When we walk through trials and we come out on the other side, for a little bit we look at life from a new perspective. We feel empowered and like we really can conquer anything. I got through that horrific year when I lost my Mom, and my husband deployed, and my infant and I went to more funerals than anyone should in a single year and we lived in two different states. I got through PPD. I even remember how empowered I felt after I gave birth to my girls--especially with Carolyn. I couldn’t believe my body had made this perfect little person and sustained her life and pushed her out and I felt like I could truly do anything and face anything.

Eventually though that feeling fades and the humdrum stuff starts looking daunting again and it’s a struggle to get through a day with a five-year old and a three-year old who are both displaying quite an attitude while your feet are swelling and your gait is starting to resemble that of a penguin (not that that has happened lately or anything). And then the big stuff, that you thought in the face of the other stuff you’ve gone through wouldn’t look so intimidating looks just as mountainous. And you forget that you once thought, “I got through that other gunky stuff… I can get through anything.”

But tonight I’m remembering. I’m remembering where I’ve come from and using that lens to look at where I’m going. I am a Navy wife. And seriously–we can do just about anything. I went through a year five years ago that I once thought would send me to an underground bunker and came out on the other side. I’ve beaten PPD and done what I could to speak into other’s lives that they can too. I’ve traveled cross country with infants and toddlers. And I’ve figured out how to clean both Karo syrup and Honey off of my kitchen floor (and two year olds).

As for this tumor and the surgery and doing it all with a newborn and two other busy, amazing little girls. Well. I’m gonna get through that too.

Besides, the reason that I have been able to come to the other side of those other things isn’t because I’m so awesome and wonderful. It’s because of my God who is awesome and wonderful. And His goodness has carried me through. His faithfulness has buoyed me. His strength and His spirit have guided me. And, “When God is for us, who can be against us?”

In His strength and power I can wake up every day until baby gets here and lay my worries down and focus on her arrival. In His strength and power I can face the travel and tests and surgery that will help me to get rid of this thing in my neck. In his mercy and grace I will find blessings along the way and comfort and encouragement on the days when the mountains just look way too freaking big. And in his goodness and grace I’ll come to the other side and look back and say, “I got through that too. He got me through that too.”

And The Winner Is:

2010-09-15T16:12:00.000-07:00

"Bob, Tell us who the winner is going to be. Will it be the illustrious Dr. Crazy Hair at UW and the McCast we've all grown so fond of or the mysterious 'super-experts' at the National Institute of Health (who better darn well be good if they're expecting us to travel 3000 miles to see them)?"

.....

....

And the winner is......NIH!!!

I'm settling there. It's time to settle. Or else Andrew will kick me in the head from going back and forth and obsessing about every little detail with him each and every night before finally dozing off mid-quandary (when he'd probably rather be doing other things... like... sleeping).

I had a really encouraging conversation this week with the research nurse involved with the Para/Pheo Study at NIH, who I believe does a lot of the coordinating of patients. Within a minute of talking to her I knew this was the way to go.

I am not chasing zebras. She assured me of that immediately It is my belief that while the doctors I have talked to here are excellent and proficient doctors that they aren't maybe as current on some of the more recent research about paragangliomas. A lot of new information has come out even just in the last few years and with a diagnosis as rare as this I think it would be easy for that research to go unnoticed. Do I think that they could have done the surgery just fine? Absolutely. Do I think that I would have had all of my questions answered and/or been set up for follow-up down the line to see what may or may not happen after Tomas takes a hike? No. And I think that within the parameters of TriCare and the referrals process it would have been difficult, maybe not impossible, to find a doctor who knows enough about Paras for me to feel comfortable. This is the way to go. It might not be the 'easy road' logistically, but I think in the end it will allow me to 'rest easier' knowing that I have ALL the information that I can get about my Tumor and what that means for my future.

The travel and the logistics will be difficult. I hope, that in the end, it will be worth it to know that I covered all of my bases. Even if I find out that I DON'T have any need to worry about the 'extra stuff' with gene mutations and recurrence and what not I will feel relieved to hear that from THE experts in this field. AND if I do deal with this on down the line I'll already know where to go to be taken care of from all angles of these cases.

I even found out that with some pumping and dumping there is a good chance that I'll be able to continue to breastfeed and that does this hormonal Mama's (who doesn't know what to do with a baby outside of that option--though I'm no Lactivist to be sure) heart good.

On top of all that, my experience so far is that these people go the extra mile to make sure that a patient is informed and reassured about care there. This amazing woman called me on her cell phone while driving to a conference in another state. The ensuing conversation was a little choppy and humorous because the state of Pennsylvania's cell phone signal is apparently spotty at best, but still... That's service.

There will be an initial visit after I make contact with NIH for the scans and full work up to make sure that this is ALL we're dealing with, to find out about the gene stuff, and to get a good solid look at Tomas really for the first time since my scan options have been limited because of the pregnancy. While we're there we'll talk to the surgical team and find out the whens and hows and why are we doing that's of the surgery which will occur sometime after the testing.

Having this piece settled is a relief. I've been agonizing over 'the right decision' for so long. I think it's time to hitch my wagon to this and make it 'the plan' if only to hold onto my sanity.

(Since this entry isn't at all funny, I will simply add here that when I found out that C's Kindergarten teacher's name was "Ms. Thomas" I immediately thought, "Oh Great! She has the same name as my tumor!!!!")

For those of you who pray, I do have one thing for you to especially pray for now that we have this settled: I want to look forward to my new little miracle's arrival. I want to think all things pink and soft and tulle-y and anticipate her little nails and ears and eyebrows and coos and smiles without immediately jumping to "After the baby comes, I have surgery," in my brain. To be sure, once she is here she will be cherished. To be sure she is already especially cherished--maybe even more so because of the x-factors that landed in this pregnancy. It has been hard for me though to let myself feel excited without feeling trepidatious either about the tumor and the treatment and all that will follow or about another thing coming out of left field that could be harmful for me or baby. Please pray that I could experience the joy of expecting this little girl (who for now is called Beanetta Fae Hillary Beula R. because of the many people who love her with us ;)). And you know... also pray that all would go well with this surgery and there would be no surprises and that I could, ya know... Be around for years and years and years with my gorgeous trio of R. princesses.

It's All in My Head

2010-09-06T12:04:00.000-07:00

To go to NIH, or not to go to NIH: THAT is the question.

For those who are wondering there is no new news on Tomas. He's still just hanging out on my neck. Following my day in Grey's Anatomy I went on a Walk to Emmaus for four days and basked in the reality of God's love *happy sigh* and following my Walk to Emmaus, we packed up and left town. We took a vacation to IL. And *I* took a vacation from Tomas. It was lovely. I didn't make Doctor's appointments. I didn't go to Doctor's appointments. I didn't spend hours on Google. I floated in the pool and spent time with people I loved and it was great.

Now we're home and I need to get back on track. And I have. I had a regular old OB appointment this week--How am I already just days away from my third trimester?! I contacted NIH again with more questions. And, after I figure out what this school schedule looks like I'll figure out a time to go get the MRI that has been ordered for a while done.

In the meantime... It's all been a mind game. I have prayed. I have ruminated. I have wondered. I have worried. And I have tried to figure out--NIH or not?

I've Googled, of course. That's led to some interesting information. The whole 'cancerous or not' issue has been clarified. Paragangliomas are apparently such boogers that you don't know if they are cancerous until they start acting like cancer, which can take years. So with most tumors you take them out and a pathologists looks at them and says, "Yep this one is cancer," or "Nope, this one isn't." But with Paras they all look the same. So unless they metastasize initially or down the line they're classified as 'benign.' Interesting, eh? Then if 2 or 3 or even 10 or 15 years down the line if you end up with a metastasis, then.... THEN it's classified as 'cancerous.'

And..... THIS is good news: Carotid Body Tumors really are generally benign.

I've also read a bit more about the SDH mutations and their prevalence and what it means if you have different ones. And I find that I still have lots of questions revolving around that issue and how it may or may not pertain to me and I find that if it does... I want more than just the cut it out and go thinking to prevail.

So I've collected all this information. And honestly the information makes me want an experty expert.

BUT...

I still feel like I'm chasing zebras. And that makes me feel foolish. And I don't like to feel foolish. So I worry and stew about my foolishness. Like it matters what Dr. #1 thinks who has only seen 5 of these in older people or what Dr. Crazy Hair thinks who has seen lots more of them but dismisses the possibility of a genetic component despite the vast amount of information I've been able to find just through Dr. Google about the potential for a genetic mutation especially in people diagnosed at younger ages with a para in their heads or necks.

And I think I'm starting to conclude that it doesn't matter what they think. That I am my own expert at this point. And that I do need more answers. Which means: NIH.

But then I come up against this other thing and that is: Going to the other side of the country for treatment is really complicated and scary and expensive. I don't know what it all looks like yet either past, "Call me when you have your baby and we'll schedule your visits." And maybe if I knew more about what it all would look like I could relax, but I don't know what it looks like so I'm left to look at this vastness of "I don't know," and I really don't like that. And maybe I'll end up being in the majority here and not have to ever worry about Tomas or any of his relatives ever in my life and then we'll have spent all that travel time and money and worry over nothing and isn't that silly? And then I go back to thinking I'm chasing Zebras again.

You see the problem.

It's all mental for the moment. It's all speculation and wondering and trying not to make a big deal out of a stupid silly tumor on the one hand (because... say it with me now everybody, "It could really be much worse!") and on the other hand going, "Ohmygosh I have a tumor on my carotid artery and I'm gonna need surgery (maybe on the other side of the country?) and that is really scary."

And THEN. THEN. THEN I go: Hello... Peace that passes all understanding? I need a little bit of you!!!!

And then I calm down. For a while. Because He's got me in the palm of my hand no matter which direction this thing goes. And He is good. And loving. And incredibly FOR me. And I remember the *happy sigh* love I came back to awareness of on my Walk to Emmaus. And I know that He is big enough for me to just rest.

And I get off the crazy train for a little bit.

Who's Got the Big Picture and How Many Zebras are There?

2010-07-28T18:32:00.000-07:00

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.

Tumah Diva

2010-07-24T15:32:00.000-07:00

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.

Counting with Val

2010-07-15T10:43:00.000-07:00

Total number of visits to see medical professionals for the months of June and July: 14. And those were all for me!

Busy Week of Doctors and Doctor Crushes

2010-07-14T12:19:00.000-07:00

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!

Incidentally

2010-07-06T08:27:00.000-07:00

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?

Pathological Googling Sometimes Pays Off

2010-07-05T21:56:00.000-07:00

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.

The Grilling of Doctor #1

2010-07-05T17:18:00.000-07:00

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.

Let Me Introduce you to Tomas. My Tumah.

2010-07-05T16:38:00.001-07:00

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.