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.”
Saturday, September 18, 2010
Wednesday, September 15, 2010
And The Winner Is:
"Bob, Tell us who the winner is going to be. Will it be the illustrious Dr. Crazy Hair at UW and the McCast we've all grown so fond of or the mysterious 'super-experts' at the National Institute of Health (who better darn well be good if they're expecting us to travel 3000 miles to see them)?"
.....
....
And the winner is......NIH!!!
I'm settling there. It's time to settle. Or else Andrew will kick me in the head from going back and forth and obsessing about every little detail with him each and every night before finally dozing off mid-quandary (when he'd probably rather be doing other things... like... sleeping).
I had a really encouraging conversation this week with the research nurse involved with the Para/Pheo Study at NIH, who I believe does a lot of the coordinating of patients. Within a minute of talking to her I knew this was the way to go.
I am not chasing zebras. She assured me of that immediately It is my belief that while the doctors I have talked to here are excellent and proficient doctors that they aren't maybe as current on some of the more recent research about paragangliomas. A lot of new information has come out even just in the last few years and with a diagnosis as rare as this I think it would be easy for that research to go unnoticed. Do I think that they could have done the surgery just fine? Absolutely. Do I think that I would have had all of my questions answered and/or been set up for follow-up down the line to see what may or may not happen after Tomas takes a hike? No. And I think that within the parameters of TriCare and the referrals process it would have been difficult, maybe not impossible, to find a doctor who knows enough about Paras for me to feel comfortable. This is the way to go. It might not be the 'easy road' logistically, but I think in the end it will allow me to 'rest easier' knowing that I have ALL the information that I can get about my Tumor and what that means for my future.
The travel and the logistics will be difficult. I hope, that in the end, it will be worth it to know that I covered all of my bases. Even if I find out that I DON'T have any need to worry about the 'extra stuff' with gene mutations and recurrence and what not I will feel relieved to hear that from THE experts in this field. AND if I do deal with this on down the line I'll already know where to go to be taken care of from all angles of these cases.
I even found out that with some pumping and dumping there is a good chance that I'll be able to continue to breastfeed and that does this hormonal Mama's (who doesn't know what to do with a baby outside of that option--though I'm no Lactivist to be sure) heart good.
On top of all that, my experience so far is that these people go the extra mile to make sure that a patient is informed and reassured about care there. This amazing woman called me on her cell phone while driving to a conference in another state. The ensuing conversation was a little choppy and humorous because the state of Pennsylvania's cell phone signal is apparently spotty at best, but still... That's service.
There will be an initial visit after I make contact with NIH for the scans and full work up to make sure that this is ALL we're dealing with, to find out about the gene stuff, and to get a good solid look at Tomas really for the first time since my scan options have been limited because of the pregnancy. While we're there we'll talk to the surgical team and find out the whens and hows and why are we doing that's of the surgery which will occur sometime after the testing.
Having this piece settled is a relief. I've been agonizing over 'the right decision' for so long. I think it's time to hitch my wagon to this and make it 'the plan' if only to hold onto my sanity.
(Since this entry isn't at all funny, I will simply add here that when I found out that C's Kindergarten teacher's name was "Ms. Thomas" I immediately thought, "Oh Great! She has the same name as my tumor!!!!")
For those of you who pray, I do have one thing for you to especially pray for now that we have this settled: I want to look forward to my new little miracle's arrival. I want to think all things pink and soft and tulle-y and anticipate her little nails and ears and eyebrows and coos and smiles without immediately jumping to "After the baby comes, I have surgery," in my brain. To be sure, once she is here she will be cherished. To be sure she is already especially cherished--maybe even more so because of the x-factors that landed in this pregnancy. It has been hard for me though to let myself feel excited without feeling trepidatious either about the tumor and the treatment and all that will follow or about another thing coming out of left field that could be harmful for me or baby. Please pray that I could experience the joy of expecting this little girl (who for now is called Beanetta Fae Hillary Beula R. because of the many people who love her with us ;)). And you know... also pray that all would go well with this surgery and there would be no surprises and that I could, ya know... Be around for years and years and years with my gorgeous trio of R. princesses.
.....
....
And the winner is......NIH!!!
I'm settling there. It's time to settle. Or else Andrew will kick me in the head from going back and forth and obsessing about every little detail with him each and every night before finally dozing off mid-quandary (when he'd probably rather be doing other things... like... sleeping).
I had a really encouraging conversation this week with the research nurse involved with the Para/Pheo Study at NIH, who I believe does a lot of the coordinating of patients. Within a minute of talking to her I knew this was the way to go.
I am not chasing zebras. She assured me of that immediately It is my belief that while the doctors I have talked to here are excellent and proficient doctors that they aren't maybe as current on some of the more recent research about paragangliomas. A lot of new information has come out even just in the last few years and with a diagnosis as rare as this I think it would be easy for that research to go unnoticed. Do I think that they could have done the surgery just fine? Absolutely. Do I think that I would have had all of my questions answered and/or been set up for follow-up down the line to see what may or may not happen after Tomas takes a hike? No. And I think that within the parameters of TriCare and the referrals process it would have been difficult, maybe not impossible, to find a doctor who knows enough about Paras for me to feel comfortable. This is the way to go. It might not be the 'easy road' logistically, but I think in the end it will allow me to 'rest easier' knowing that I have ALL the information that I can get about my Tumor and what that means for my future.
The travel and the logistics will be difficult. I hope, that in the end, it will be worth it to know that I covered all of my bases. Even if I find out that I DON'T have any need to worry about the 'extra stuff' with gene mutations and recurrence and what not I will feel relieved to hear that from THE experts in this field. AND if I do deal with this on down the line I'll already know where to go to be taken care of from all angles of these cases.
I even found out that with some pumping and dumping there is a good chance that I'll be able to continue to breastfeed and that does this hormonal Mama's (who doesn't know what to do with a baby outside of that option--though I'm no Lactivist to be sure) heart good.
On top of all that, my experience so far is that these people go the extra mile to make sure that a patient is informed and reassured about care there. This amazing woman called me on her cell phone while driving to a conference in another state. The ensuing conversation was a little choppy and humorous because the state of Pennsylvania's cell phone signal is apparently spotty at best, but still... That's service.
There will be an initial visit after I make contact with NIH for the scans and full work up to make sure that this is ALL we're dealing with, to find out about the gene stuff, and to get a good solid look at Tomas really for the first time since my scan options have been limited because of the pregnancy. While we're there we'll talk to the surgical team and find out the whens and hows and why are we doing that's of the surgery which will occur sometime after the testing.
Having this piece settled is a relief. I've been agonizing over 'the right decision' for so long. I think it's time to hitch my wagon to this and make it 'the plan' if only to hold onto my sanity.
(Since this entry isn't at all funny, I will simply add here that when I found out that C's Kindergarten teacher's name was "Ms. Thomas" I immediately thought, "Oh Great! She has the same name as my tumor!!!!")
For those of you who pray, I do have one thing for you to especially pray for now that we have this settled: I want to look forward to my new little miracle's arrival. I want to think all things pink and soft and tulle-y and anticipate her little nails and ears and eyebrows and coos and smiles without immediately jumping to "After the baby comes, I have surgery," in my brain. To be sure, once she is here she will be cherished. To be sure she is already especially cherished--maybe even more so because of the x-factors that landed in this pregnancy. It has been hard for me though to let myself feel excited without feeling trepidatious either about the tumor and the treatment and all that will follow or about another thing coming out of left field that could be harmful for me or baby. Please pray that I could experience the joy of expecting this little girl (who for now is called Beanetta Fae Hillary Beula R. because of the many people who love her with us ;)). And you know... also pray that all would go well with this surgery and there would be no surprises and that I could, ya know... Be around for years and years and years with my gorgeous trio of R. princesses.
Monday, September 6, 2010
It's All in My Head
To go to NIH, or not to go to NIH: THAT is the question.
For those who are wondering there is no new news on Tomas. He's still just hanging out on my neck. Following my day in Grey's Anatomy I went on a Walk to Emmaus for four days and basked in the reality of God's love *happy sigh* and following my Walk to Emmaus, we packed up and left town. We took a vacation to IL. And *I* took a vacation from Tomas. It was lovely. I didn't make Doctor's appointments. I didn't go to Doctor's appointments. I didn't spend hours on Google. I floated in the pool and spent time with people I loved and it was great.
Now we're home and I need to get back on track. And I have. I had a regular old OB appointment this week--How am I already just days away from my third trimester?! I contacted NIH again with more questions. And, after I figure out what this school schedule looks like I'll figure out a time to go get the MRI that has been ordered for a while done.
In the meantime... It's all been a mind game. I have prayed. I have ruminated. I have wondered. I have worried. And I have tried to figure out--NIH or not?
I've Googled, of course. That's led to some interesting information. The whole 'cancerous or not' issue has been clarified. Paragangliomas are apparently such boogers that you don't know if they are cancerous until they start acting like cancer, which can take years. So with most tumors you take them out and a pathologists looks at them and says, "Yep this one is cancer," or "Nope, this one isn't." But with Paras they all look the same. So unless they metastasize initially or down the line they're classified as 'benign.' Interesting, eh? Then if 2 or 3 or even 10 or 15 years down the line if you end up with a metastasis, then.... THEN it's classified as 'cancerous.'
And..... THIS is good news: Carotid Body Tumors really are generally benign.
I've also read a bit more about the SDH mutations and their prevalence and what it means if you have different ones. And I find that I still have lots of questions revolving around that issue and how it may or may not pertain to me and I find that if it does... I want more than just the cut it out and go thinking to prevail.
So I've collected all this information. And honestly the information makes me want an experty expert.
BUT...
I still feel like I'm chasing zebras. And that makes me feel foolish. And I don't like to feel foolish. So I worry and stew about my foolishness. Like it matters what Dr. #1 thinks who has only seen 5 of these in older people or what Dr. Crazy Hair thinks who has seen lots more of them but dismisses the possibility of a genetic component despite the vast amount of information I've been able to find just through Dr. Google about the potential for a genetic mutation especially in people diagnosed at younger ages with a para in their heads or necks.
And I think I'm starting to conclude that it doesn't matter what they think. That I am my own expert at this point. And that I do need more answers. Which means: NIH.
But then I come up against this other thing and that is: Going to the other side of the country for treatment is really complicated and scary and expensive. I don't know what it all looks like yet either past, "Call me when you have your baby and we'll schedule your visits." And maybe if I knew more about what it all would look like I could relax, but I don't know what it looks like so I'm left to look at this vastness of "I don't know," and I really don't like that. And maybe I'll end up being in the majority here and not have to ever worry about Tomas or any of his relatives ever in my life and then we'll have spent all that travel time and money and worry over nothing and isn't that silly? And then I go back to thinking I'm chasing Zebras again.
You see the problem.
It's all mental for the moment. It's all speculation and wondering and trying not to make a big deal out of a stupid silly tumor on the one hand (because... say it with me now everybody, "It could really be much worse!") and on the other hand going, "Ohmygosh I have a tumor on my carotid artery and I'm gonna need surgery (maybe on the other side of the country?) and that is really scary."
And THEN. THEN. THEN I go: Hello... Peace that passes all understanding? I need a little bit of you!!!!
And then I calm down. For a while. Because He's got me in the palm of my hand no matter which direction this thing goes. And He is good. And loving. And incredibly FOR me. And I remember the *happy sigh* love I came back to awareness of on my Walk to Emmaus. And I know that He is big enough for me to just rest.
And I get off the crazy train for a little bit.
For those who are wondering there is no new news on Tomas. He's still just hanging out on my neck. Following my day in Grey's Anatomy I went on a Walk to Emmaus for four days and basked in the reality of God's love *happy sigh* and following my Walk to Emmaus, we packed up and left town. We took a vacation to IL. And *I* took a vacation from Tomas. It was lovely. I didn't make Doctor's appointments. I didn't go to Doctor's appointments. I didn't spend hours on Google. I floated in the pool and spent time with people I loved and it was great.
Now we're home and I need to get back on track. And I have. I had a regular old OB appointment this week--How am I already just days away from my third trimester?! I contacted NIH again with more questions. And, after I figure out what this school schedule looks like I'll figure out a time to go get the MRI that has been ordered for a while done.
In the meantime... It's all been a mind game. I have prayed. I have ruminated. I have wondered. I have worried. And I have tried to figure out--NIH or not?
I've Googled, of course. That's led to some interesting information. The whole 'cancerous or not' issue has been clarified. Paragangliomas are apparently such boogers that you don't know if they are cancerous until they start acting like cancer, which can take years. So with most tumors you take them out and a pathologists looks at them and says, "Yep this one is cancer," or "Nope, this one isn't." But with Paras they all look the same. So unless they metastasize initially or down the line they're classified as 'benign.' Interesting, eh? Then if 2 or 3 or even 10 or 15 years down the line if you end up with a metastasis, then.... THEN it's classified as 'cancerous.'
And..... THIS is good news: Carotid Body Tumors really are generally benign.
I've also read a bit more about the SDH mutations and their prevalence and what it means if you have different ones. And I find that I still have lots of questions revolving around that issue and how it may or may not pertain to me and I find that if it does... I want more than just the cut it out and go thinking to prevail.
So I've collected all this information. And honestly the information makes me want an experty expert.
BUT...
I still feel like I'm chasing zebras. And that makes me feel foolish. And I don't like to feel foolish. So I worry and stew about my foolishness. Like it matters what Dr. #1 thinks who has only seen 5 of these in older people or what Dr. Crazy Hair thinks who has seen lots more of them but dismisses the possibility of a genetic component despite the vast amount of information I've been able to find just through Dr. Google about the potential for a genetic mutation especially in people diagnosed at younger ages with a para in their heads or necks.
And I think I'm starting to conclude that it doesn't matter what they think. That I am my own expert at this point. And that I do need more answers. Which means: NIH.
But then I come up against this other thing and that is: Going to the other side of the country for treatment is really complicated and scary and expensive. I don't know what it all looks like yet either past, "Call me when you have your baby and we'll schedule your visits." And maybe if I knew more about what it all would look like I could relax, but I don't know what it looks like so I'm left to look at this vastness of "I don't know," and I really don't like that. And maybe I'll end up being in the majority here and not have to ever worry about Tomas or any of his relatives ever in my life and then we'll have spent all that travel time and money and worry over nothing and isn't that silly? And then I go back to thinking I'm chasing Zebras again.
You see the problem.
It's all mental for the moment. It's all speculation and wondering and trying not to make a big deal out of a stupid silly tumor on the one hand (because... say it with me now everybody, "It could really be much worse!") and on the other hand going, "Ohmygosh I have a tumor on my carotid artery and I'm gonna need surgery (maybe on the other side of the country?) and that is really scary."
And THEN. THEN. THEN I go: Hello... Peace that passes all understanding? I need a little bit of you!!!!
And then I calm down. For a while. Because He's got me in the palm of my hand no matter which direction this thing goes. And He is good. And loving. And incredibly FOR me. And I remember the *happy sigh* love I came back to awareness of on my Walk to Emmaus. And I know that He is big enough for me to just rest.
And I get off the crazy train for a little bit.
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