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Treebywater

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    We've decided next steps

    in MEMBER UPDATES

    Posted

    (((Judy))) I know you don't know me real well, but you caught my eye your very first post. I just want you to know I'm pulling for you and praying for you. Coming to a decision is always a relief. I'll be checking in and following how things go.

    Val

    Care Page Update

    in MEMBER UPDATES

    Posted

    #1) I'm praying for you and pulling for you.

    #2) I am SO impressed at how you put them in their place and TOOK CHARGE OF YOUR CARE!!!! I so wish that medical professionals respected how important OUR part is in the process. I admire, you Judy!!!

    Where are my allies

    in GENERAL

    Posted

    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.

    An interesting topic...born out of another thread

    in GENERAL

    Posted

    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.

    LC and MORE

    in MEMBER UPDATES

    Posted

    Hi Tom!

    I know a little bit about Parotid Gland Tumors because of my own experience with a Carotid Paraganglioma (Carotid Body Tumor)--you end up reading a lot about other head and neck tumors--and also because my next door neighbor is currently dealing with one.

    It sounds like you guys are proceeding exactly as you need to. The biggest issue is that you need to find someone who is very experienced with these surgeries and highly skilled because of the proximity to the important nerves--is it the Vagus nerve that is the issue for Parotids? It's also my understanding that they often don't biopsy these things because of their location near nerves and blood vessels (is that right??)

    You mentioned Mayo--are you all thinking of going there? I have heard only wonderful things about them and I've also learned that often care is less expensive there than at other institutions. I know traveling for surgery like this can be extra nerve-wracking.

    I said the very same thing she did--I'm going to stop going to doctors because they keep finding stuff! I SOOO KNOW Her frustration there (and also so get that she's kidding).

    I'm praying for you both and hope that all goes well. Please keep us posted! I'd be happy to ask my friend any questions you might have. I know how frustrating it is to have something so rare. It feels completely isolating and makes it all that much more scary.

    Okey dokey

    in MEMBER UPDATES

    Posted

    :( Grrr! Baa! Stupid cancer!!!!

    I know it isn't good news and all surgery is scary. I'm glad that it is such a little booger, though.

    All the same. Boogers are boogers and I'm sorry you're going through this. Another cancer?! Geesh...

    Praying for you, Judy!!!

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