Elaine
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Posts posted by Elaine
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Thanks Becky for sharing news about Muriel.
Muriel, we love you and can't wait to hear your tales! BUt get yourself better okay?
love and fortitude
elaine
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Wonderful news!
elaine
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Welcome home!
Prayers that the Pet on Tuesday does NOT in any way resemble a Christmas tree!
love and fortitude
elaine
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Tann
While you are busy doing Christmas things, I hope the WBR elves are busy at work getting rid of the little brain monsters... I hear large doses of Christas Carols, holiday shopping, and being with family are each good medicine, too.
I know how relieved you must be to not have to do any treatment right now, so leave the worries to Santa and the work to the elves.
And dont ever forget how AMAZING you are.
love and fortitude
elaine
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The fact that you are all so happy for me, makes me even happier! We went out tonight and had $30.00 steaks! I kept thinking that was a whole lot of Ativan we were eating, lol. But once the steaks arrived, I did enjoy my meal!
The reason we probably have to wait until Jan 1 for tests etc is because my new Doctor is not officially my new Dr., so she cant really order me tests (unbelievable bueracracy, I know!) And she can't really call Skinny up and tell Skinny what to do. But I am going to keep working on making her my official Dr. as soon as I can since I am one step away from calling the newspaper. (But like some small towns, and this really is a small town kind of place even though it's the biggest in the state) the press may be reluctant to write about two main employers and two hefty advertisers.
However, she's lining up the appointments now and she will flash out referrals later!
Since I spent two hours this AM before a 10 am appointment wrestling with the clinic administrators, who had promised me yesterday that they would "fix" things so I didn't have to pay today, and of course I ended up having to pay (thank God it was worth it and more!), I didn't have the stomach to come home and badger them.. Why ruin a good day!
I have PFTs tomorrow that Skinny had ordered way back when, so Angel Doc convinced me to have them done and insist the reports be sent to her, so I don't have to ever talk to SKinny again, we can only hope. I don't know if that can be done or not but I can pick them up I guess and take them to her like I did everything else today.
Anyway, I would like the PET and Bone and brain scans I was "promised in Oct. Sheesh. On the other hand, I want Christmas too.
elaine
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Addie,
I trust her to point me to Drs who are good. She, being a human, unlike someone else I know, knows who is not only good, but GOOD, as in good with people.
She called an onc right then and there. He and she want me to have a bronchospy before I see him. I have resisted having one since day one, but when she told me I had to do it, and the way she said it, I would do anything, even do my best to be awake through it, if it comes to that.
Together we picked a pulmonologist and it might be after the new year, but she assured me based on my CT that it should be ok to wait. I felt calmer just being in her presence.
I guess having been told 10 months ago that I only had 6-9 months, makes me a little nervous, lol.
They need to REALLY see what is going on and get a good hunk of it, cause all I had were sputum cytologies and each said a diferent thing. The CT doesn't really show the mass to the extent needed, so......it's hard telling what's going on there. We just know it is still confined to the bronchus. There is some lymph node involvement, but this report said two and previous reports said four, so who knows. PET Scan at DX showed three. They aren't growing much either. I have a small area of collapsed lung distal to the bronchus. It is NOT a mass to the best of anyone's ability to say.
I only wish I knew if my brain and spine/bones were "clean." And I am still a lot angry that I don't know that yet.
I also have some pretty hefty emphysema in upper lobes. This report calls it "moderately severe" while 10 months ago it was deemed mild to moderate....????? I need a pulmonologist, that's for sure.
This is probably more info than anyone needs or wants to know, so sorry.
She says it's all puzzling to be sure and thought that if I weren't freaked out about it, I wouldn't be normal. Whereas, Skinny thought I was whacko for being freaked out. Worse, what Skinny deemed being whacko is wanting to know information and pushing to get her to move! That's the main difference. One has empathy and the other does not.
elaine
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Darn, I must have missed a funny Shelly post!
Becky, there may be some blessings in going to 20 hours for a time. More time with the power tools, for one
. You need to get your world all comfy. You need the peace of knowing you have a respite from the world. We are nest makers at heart.
One foot in front of the other. I was doing much better when I woke up each day knowing I could still put one foot in front of the other. Now that I am not so sure on any given day that I can do that without pain and hobbling like I am 89, I am fighting off depression.
When I look ahead to all that I need to be doing in the next months, including finding a nest so I can nest in
, I am also feeling some stress. I am wondering how my body will fail me, it's not an IF any more. That sucks. But I am counting my blessings and I know you do too. You are human, my friend. That's all we are. Just little specks in time. But from our vantage point, look how large we look! (some of us larger than others, lol--I mean me, for sure!!!). It's all about perspective. I know that, intellectually. But emotionally, it's hard to live within the confines of perepective. We mostly prefer the illusion of what we see up close, even to our own detrement.
Ok, so now I am philosphizing about the universal "we." . Damn, my training.
On the other hand, the up close way we see our lives is what we have to deal with. Moving, Drs., inner fears about our health, our children and our parenting etc, etc.
And sometimes, that seems daunting, even when we are not ill. But when we are, and to whatever degree, yikes!
How can we not be "slighly depressed?"
You are an amazing young woman! And all the amazing women, men and children etc that came before us and who will come after us, make up the big picture. The one we can't really ever see, at least not in this life.
So keep on being amazing and amaze yourself with your many gifts. And if a little chemical help is in the picture and a lot of just "you" time can be had, you will come back even more amazing.
love and fortitude
elaine
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I really liked the big picture the best! I just HAD to keep opening up this thread yesterday. The first time I opened it, it was kind of shoking and made me laugh out loud. I just kept having to open it all afternoon, and getting the little shock and the great big smile!
Oh how lucky you are to be able to do baldness so well!
love and fortitude
elaine
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Di
You are writing a wonderful book and helping those on here who may have to face PCI or WBR. Thank you. If I ever need WBR, I will cherish the words you have written, and use them as a part of the battle gear I am sure to need!
love and fortitude
elaine
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All your prayers and good wishes have brought an angel to me. An angel with a stethascope around her neck! A Dr. who we all expect to see and often don't. She IS the right one for me. Now I have to find a way to pack her up and take her with me when I move. Already I miss her. That is how much I like her.
I am guessing I am carrying a ton of weight on my shoulders, and after my 90 minutes with her, I surely have shed several hundred pounds.
Thank you all. I do believe the energy and love from this board was with me when I chose a name, just a name is all I had to go on.
elaine
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I do have some good news, but not going to post it in "good news" because not all the news is in, and I don't want to jinx any of it.
My liver and adrenals are "clean"!! My husband starts a new job on Monday, which means I am moving sometime (he's moving this weekend), and better yet our new insurance is NOT an HMO. I will once again be in charge of my own "referrals", but I will really be in the middle of nowhere, so....we shall see .
The nightmare with "Dr. Skinny" and her lovely bueauracratic(sp) friends at the clinic continues. It's a saga, but the short of it is, the HMO is conducting an investigation.
Since I no longer trust anyone in the health field--(except, of course oncdoc and Thereas), I have no idea if the investigation holds any meaning or not.
However, there is a lovely young woman at the HMO, who without my insistance, was as horrified as many of you are and decided enough was enough and got an outside "consultant" (paid I am sure by the HMO, so is that really "outside"? to look into the clinic, my current Dr., my former Drs and supposedly what role the HMO, itself, has played in the last 10 months of baloney.
Being the cynic, I am, I have a feeling that somehow this will all turn out to be my fault, lol. I am sure once they get done with pointing fingers at each other, they will point them at me.
Since the results of the investigation will not be available to me, I don't know what it means.
Oh, well. At least I know the young woman at the HMO sees her job as serious, believes in the mission statement of her company, and believes that the word "CARE" is the most important part of the word "healthcare." She's probably new and VERY young!
I made an appointment with a new Dr who I see tomorrow, even though I have not yet been given "permission" to change PCPs. The irony of that would be funny if not so horrible. Lord knows, I would love to tell you about THAT whole story, but I know it would take pages.
There were some troubling things on the CT scan, but I don't really understand the ramifications of them, so I am not going to post that until I can understand what it means.
I am going to try to wrestle my reports and maybe the films from the clinic today.
The rest of my results are unknown to me, since when Skinny finally called back last evening, she was not about to answer questions (now does that surprise me?!) and basically hung up on me, since I guess two questions is her limit.
I want to apologize to the whole board. I have not been in an emotional place where I feel I can post any support, though in my heart and prayers I am posting my care, concern, joy and sadness.
I am truly feeling the effects of what I think has been months of battering at the hands of medical professionals since the day of my DX. The real question I have to ask myself is why I allowed it to continue. It was hopelessness, pure and simple. Denial, too, I guess. Fear, too.
I am trying to heal, but hard to do when the battering continues. I am feeling like Don Quioxoti (sp)-- Except my windmills really are monsters.
I need to get my armour on, because there's less than 6 hours left in this day to badger my caregivers.
love and fortitude
elaine
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My tumor started in my right main bronchus. There has always been somewhat of a question as to if the area in the lung is turmor or a small area of collapsed lung. At one point they thought it was the beginning of a different tumor. Whatever it is, it hasn't grown much at all in 10 months.
I assumed a spiral CT scan could "see" tumors within a bronchus or within the trachea, but the tech today told me that a CT scan is not a good way to "see" either place.
However, my first scan report does indicate an area that he presumes is the mass within the bronchus.
So is the tech right or wrong?
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Right before the Spiral CT, I had to drink some vanilla flavored barium because the tech said I was getting a abdomen scan, too. Then I got the iodine IV.
After I was done, she came out and told me they needed the adrenals so they stuck me back in.
This seems weird to me. Doesn't it sound like I didn't get a whole abdomen CT--I am hoping I at least got the liver and adrenals.
Anyone know?
I thought the last time I had this done, I had to drink two liquids, one an hour or maybe less before the test....
I am also wondering why they came out and did the adrenals? Because they saw something?
Any help would be appreciated.
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Right before the test I had to drink some vanilla flavored barium because the tech said I was getting a abdomen scan, too. Then I got the iodine IV.
After I was done, she came out and told me they needed the adrenals so ththey stuck me back in.
This seems weird to me. Doesn't it sound like I didn't get a whole abdomen CT--I am hoping I at least got the liver and adrenals.
Anyone know?
I thought the last time I had this done, I had to drink two liquids, one an hour or maybe less before the test....
Any help would be appreciated.
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I am home. The tests went smoothly but I have no idea when I will get any results or who I will get them from. The tech did say that if something really bad was seen, I would be called today. They did spiral CT of chest and abdomen--and then afterward, they came back and said they needed to do adrenals so I went back in.
We went to lunch and then Christmas shopping. Home now and no message on the machine.
I thought I would be getting a PET and bone scan, but I guess I should feel lucky I got anything.
elaine
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Beth
Pls call him back today. "Interesting" is used as a eupheimism (sp) but is used for so many things, but not usually really bad things..... I think so, anyway.
I just hate that you are being made to wait and wait. It seems life goes into a kind of holding pattern during all this waiting.....
love and fortitude
elaine
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Kim
I began a long letter to my Drs last night. The anger wore me out finally, so I could sleep a bit. I have no idea who I will get my results from and that hurts me and scares me and just plain makes it hard for me to breathe. It seems immoral to me. All I did is try to find out some answers but I guess that means I wasn't compliant enough and must have embarrassed some people in the process. When the med director informed of this the day before Thanksgiving, I felt like someone had slapped me. And the way she did it, I could tell it was meant to be a slap.
Thank you all, you don't know how badly I need you and your prayers.
Plsease add my family to those prayers. They are so good and they need me to be strong.
elaine
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Sobbing my eyes out here, too. I was having a "Jack" morning even though I am old enough to know better.
I am praying so hard for your daddy, Angie. He is my "silent" partner as you all came on board when I did. I have my three guides in heaven, TBone, Howard and Deb plus members of my own family.
I have earth angels who have stepped into their places but your Daddy seems right beside me all the way.
And I have so many others here on the board, too many to name.
I am so full of being human that sometimes all I can ask God for is a miracle--as if I know best, which I don't.
love and fortitude
elaine
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May you find comfort and joy in memories of times spent with your aunt.
love and fortitude
elaine
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Your good news and your will to survive lift my spirits. Thank-you.
Praying your DNA is a match... (Not something I would say to a suspect,
love and fortitude
elaine
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Maybe I can face my tests later this AM, but I don't want to without you guys.
I know it seems unfathomable that SEVEN weeks ago I set out to get tests that would stage me, and I am only NOW getting the tests I need.
In reality, I set out to do this in August, and it has been a battle ever since--. I should have lied back then about my pain.
Even in my own mind I can't understand what has happened--mainly because the HMO says one thing and the clinic says another--each pointing fingers. Add to that my former PCP and onc and now my new PCP.
I am getting the scans, though I feel abused by the whole process--and I no longer have a PCP because the clinic won't assign me a new one and the one I have ironically feels mistreated by me. I hope she is never sick and finds out what it really means to be "MIS-treated."
So not only am I scared of the tests and results, I would have liked to think that I would have a caring Dr to lead me to the next steps.
So I am asking not only for prayers for decent results, but also that a medical "angel" steps into this nightmare and offers me not only hope but an ounce of compassion.
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Angie
I am so sorry. I hope you get better news tomorrow. Keeping you all in my thoughts.
love and fortitude
elaine
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, I am also feeling some stress. I am wondering how my body will fail me, it's not an IF any more. That sucks. But I am counting my blessings and I know you do too.
Pretracheal lymph nodes
in LUNG CANCER 101
Posted
Its been a long time since I was intitially staged and I can't remember exactlly what made me stage IIIb. Would pretracheal lymph node involvement be the resaon or should I say a reason?
From what I can see that would make me a IIIA. The other lymph node was in the aorticopulmonary window. (There may be two nodes in the pretracheal area--though this CT shows only one).
You have been such a Godsend oncdoc. I thank you in advance.
elaine