Treebywater

I'm so sorry that I missed this when you originally posted this and that now you are fighting the beast with your husband. I'm glad that the lung has responded and praying about this spot in his bone.

Oh Ms. Kasey. I just love you. And your story. And the encouragement and hope you give me.

http://www.doctoroz.com/videos/could-yo ... ancer-pt-2 Here is Kasey's clip!!

Those are a sock in the gut, aren't they?

This is so awesome and fantastic and wonderful I don't know what to say. So glad to read this today!

Oh...

Look at that sweetheart!!!! And look at you, gorgeous and happy! It's so good to hear from you, Beth!!!!

http://www.abta.org/Care_&_Support/Fina ... sources/49 This link was posted at another support site I visit. It starts out talking about 'brain tumors' but it seems to be applicable to a wider spectrum than that. I hope something here is helpful!

The article was excellent. I nearly came unglued when I saw the first comment though. Made me want to smack that person with a stupid stick.

I agree with the face punching. I don't get it either. The people who have loved ones who died from it and still shrug their shoulders and go, "Well they smoked!" HELLO?! I honestly don't even think it's an issue of ignorant vs. non-ignorant in those cases so much as I can't understand how someone could possibly care so little. I'm sure they did care and that they did grieve, but how can you have that attitude after being face to face with this disease? How can you possibly look at your Mom or Dad and think they got what was coming to them? My Mom was not a perfect woman smoker or otherwise, but I LOVED her and saw past all those flaws. I CAN'T be callous about what happened to her because it gutted me and I can't compartmentalize it and say that it just happened because she smoked because it just plain doesn't make sense and even if it did she's my MOM. Anyway. I'm with you. I don't get people. The more hard situations and heart-breaking scenarios I live through the more I'm startled that the way that I care and the way that I think really aren't like the way other people care and think.

You said it so perfectly.

Oh Melinda. I DO remember you too, and I can't believe you have need to be here again. It's JUST NOT FAIR. I am so sorry. Praying for you and for your Dad.

I am so, so sorry.

Double posted. Sorry!

I think a lot of people feel torn about things that they care about and things they care about on behalf of other people. After feeling really conflicted about things from my own perspective I think the issue might be more complex than people not caring--at least for some people. I tend to be the kind of person who cares deeply about a lot of things. I went to a camp that provided services for kids with disabilities one year back in high school and was hooked. I worked with kiddos who had autism and suddenly I wanted to be active in anything that had to do with supporting families affected by autism (in fact I ended up going to school for a degree in special education). Fast forward a few years and my Mom gets Lung Cancer. I learned the facts and stats and wanted to mobilize. Fast forward a couple years and I end up having Postpartum Depression. I learn the facts and stats (especially regarding people in the military family demographic) and I immediately wanted to mobilize. Fast forward a couple of years and I get a rare tumor. I learn a lot about these tumors and find others dealing with it and... well you get the idea. On top of that, in my family I have an uncle who died from cancer on his adrenal glands, an uncle who survived hairycell leukemia, an uncle who survived lymphoma and prostate cancer, and an uncle who survived kidney cancer--that's all on my Mom's side and not counting my aunt who survived breast cancer and my grandfather who died from stomach cancer... Or my friend who died of pancreatic cancer. Or my dear friend whose baby girl was born with hypoplastic left heart syndrome AND my husband is in the military so there are whole lot of other issues that I should really care about--wounded warriors, war widows, and morale, welfare, and recreation. So... If I gave money to the organizations represented by things that have affected people I've cared about, I would literally go broke. Even if I gave of my time and my money even just to the things by which I have been directly affected, I'd be working 24-7 and also in the poorhouse. I think a lot of my family, honestly, probably wonders why I am so 'lung cancer specific' in my support given the multiple ways we've been effected. THIS is why I wish the American Cancer Society was a more effective organization which put it's moneys toward supporting all cancers in a statistically equitable way. I DO WANT to support any endeavor which globally leads us closer to cancer cures and cures for rare medical maladies. I don't take it personally when people don't support me or do so to a greater degree one year and not the next. Chances are their plates are full with causes they deeply care about and people they dearly love who are struggling too. AND sometimes I focus more on loving the people in front of me instead of the charities that raise funds to fight the specific diseases. Sometimes my resources--time, talent, money etc. go there. I've felt guilty at times about pulling back from here and personal activity for Lung Cancer. Since I had my own different health concerns this last year I pulled out of nearly everything and haven't figured out exactly how and where to re-engage. Do I support just the things that are effecting me now? The thing that is the most deadly? The thing that effects the most people? The thing that is more under-represented? The thing that is so rare that people feel absolutely isolated and unable to find support? I don't know. But I just can't throw myself at everything anymore and it's becoming more and more apparent to me that there will always be an important cause which personally affects me. I can't help but wonder if it's the same way for a lot of other people... Especially in a world of Facebook and Blogs which have the amazing capacity to draw our attention to the stories of others who re suffering, but the flipside of that is that almost become numb to that as a result. I guess what I'm saying is, it might seem callous to us. It might seem like people don't care. But maybe some of those people really DO care but have focused themselves somewhere else. Maybe it is compassion fatigue. Or maybe it's that they haven't been gutted by the experience of being personally effected yet. Anyway, that's kind of where my thoughts are on the issue right now.

I hate this news. We're pulling for you!

YAYYYYY!!!!!

Sara-- I hate Lung Cancer. I'm sorry you're dealing with this and dealing with it so young... but I'm really glad you're here.

Love this news. Miss you. Wish I could have taken on the NIH with you again!

I'm praying, Lisa!!

I'm so sorry, Ginny.

Praying here too!

Some of you know that partway through my last pregnancy (I have three sweet girlies now!) I was diagnosed with what is known as a carotid paraganglioma or a carotid body tumor. Basically that's a tumor on my carotid artery. Now that baby is here it's time to get that taken care of, so this Saturday we're headed to the NIH to be part of a clinical study and to have the tumor surgically removed. Because this happened to me at a relatively young age there is a good possibility that it was caused by a genetic mutation. If that's the case I may be dealing with a paraganglioma syndrome and possibly recurrence/metastasis further down the line. We'll find out the full story as a result of this study and the tests that I'll have. Our big girls will be staying here with family and our baby girl (2 months old) will be joining us. I would love it if you all would be willing to pray for me. I sure didn't expect this, but I think we've found the right people to help us deal with the issue at NIH.

I'm not looking at needing the BRCA gene testing, but for my own situation (have had some weird tumor-related health concerns here lately) I'm getting some genetic testing done in just a couple of weeks. I so very much understand the anxiety that you're talking about. The testing I'm doing wouldn't come with surgical options right up front it would be just more for surveillance purposes. For me, I want to know what I need to be looking for in the future. I want a reason for doctors to be looking so that things can be caught early. And I want to know what the implications might be for my kids and their kids and my family so that we all know to be vigilant. As overwhelming as looking at THAT picture is, I feel like I have a duty to them to find out what I've gotten us all into and what we can do to counteract it. For me, I want to be able to DO something. Learning more about what might come my way so that I can DO something about it is my way of feeling like I have a little control in an uncontrollable situation (just reread and say that Katie said the same thing). On the other hand, I do know of people who know that the anxiety of knowing and wondering what the implications of the findings might be would undo them and they do forego the testing. I'm also nervous about insurance implications... But most of me still says: I want to know.

Love you. And I'm so sorry.