Outrider1
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Posts posted by Outrider1
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Thanx everyone for the positive thoughts and prayers. They are very muchly(I know, not a word but it works for us in our house, lol) appreciated.
You know Eric, You and I have something in common. I am of Scottish descent. My maiden name is Young and I used to have the red hair ( since chemo and radiation it is coming back in finally but is a charcol gray in color, but when it gets a little longer it will be red again, even if it comes from a bottle!) and I still have all the freckles. I have always wanted to visit Scotland and England and Wales.
Anyway, just a tidbit and again thanx for the good wishes. I will let you all know what the Drs say next week.
Dawn
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Yes, Wed the 5th is pet/ct scan time again. Then I have to wait a week to get results. I just hope I studied well enough for this one and hope to pass with flying colors, but we shall see and deal with whatever comes along.
Had an MRI of my liver and my brain last week and woke up to a breathing treatment and hearing that my blood pressure dropped while knocked out in the MRI machine. I should have told them that the blood pressure they recorded and were concerned about is normal for me when I am asleep or have just woke up (75/55 is normal for me upon waking). I woke up fighting the mask on my face for the breathing treatment so I just didn't think to tell them. I am so claustrophobic that a mask on my face that I am not fully aware of when it goes on will cause the reaction of fighting to get it off. I woke up one time hitting my SO cause he had gotten too close to me in our sleep. At the time, it did not occur to me that it was claustrophobia. Poor guy! I finally realized that is what it was when I had my first MRI and had to be sedated to get it done.
Since I have not heard from anyone about the most recent MRI, I will take that as good news but will be sure to ask the Dr on the 12th what the results were even though the MRI was ordered by my PCP and I am seeing the Onc.'s.
I got my fingers crossed!
Dawn
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Great news, Dana!! I hit 24 months on the 12th of May. I find it rather glorious, myself!
Dawn
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Here it is 10:49 and no air yet, I hope everyone is doing well this bright morning. It is 57 degrees at almost 11 of the clock and sounds to be breezy outside. It's supposed to warm into the upper 70's by afternoon. I have no particular plans for the day except to maybe go to the library after my daughter gets home from her drill meet, if it is early enough.
I think I am gonna go warm up some home made chicken noodle soup that my daughter made yesterday. It turned out rather well, but I knew it would since she followed my instructions and used my recipe, lol. She did good for a first try
(she is thinking of going to culinary school, so I have been letting her get her hands into the cooking of dinner).
I hope you all have a lovely spring day today.
Dawn
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Good Morning!
Well today is Wednesday and it's Chat day. Don't forget! starts at 11:30 am CDT.
I will look for you there!
Dawn
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Times for chat on Wednesday:
12:30 EDT
11:30 CDT
10:30 MDT
09:30 PDT
DT means daylight saving time. If that does not apply to where you are I am not sure what the time would be. For those out of the country that might like to participate, I can also host a chat late at night or early mornings (like 3 or 4 in the morning) as I am usually up. We just have to let others and Katie know in advance.
If I am late getting in the chat room, please feel free to start without me, or wait till I can get in. Sometimes the internet here does not work as advertised and it may take me a while to get in. I usually start trying to get in about 11:00.
Dana, you have not missed it. It's tomorrow, lol.
Look forward to seeing some of you there!
Dawn
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Hey guys,
It is early Tuesday morning (1:30 AM) and I wanted to remind you about chat on Wed. at 11:30 AM.
It sure would be nice to chat with you all, if you can make it.
Dawn
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54 here in NTX today along with sunshine and a bit of a breeze. Looks like we are gonna get to dry out here for the next two days and have highs in the upper 70's. Then on Thursday it's back to clouds and the possibilities of rain.
Think I will try and get the car washed while the sun shines and the temps are higher than normal. That way we can do it ourselves instead of spending money to get it done.
Hope you all have a great day.
Dawn
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Ann,
I am always looking at recipes. I have now and have had a ton of those small recipe books you can pick up at the check out in the grocery stores. I periodically go through and sell them to 1/2 Priced Books! I keep the ones that look as though I may use them. I have two Good Housekeeping (red and white checkerboard on the outside) cookbooks, one from the early 60's and a newer one (early 2000's).
I love recipe books and can get lost in them for hours.
Dawn
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Morning Bud, you beat me to it this morning, lol.
Still only 54 and cloudy at 9:00 am in NTX. Don't know about the rest of ya'll, but today I am gonna make a few phone calls and then sit and veg in front of the computer the rest of the day. Maybe look up some new recipes for my "recipe box".
I hope the weather is what you want where ever you all are and that you all have a blessed day.
Thinking of you, Heidi!
Dawn
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Sounds like a great time, Judy. I will try to remember to start the AIR if I am first on in the mornings.
Get some well deserved rest and enjoy yourself. (Wish it was me, lol)
Dawn
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ts, this cake sounds like it would also be good with peaches or maybe mandarin oranges, pineapple and some fresh coconut in the streusel mix for a tropical flavor. I will have to give it a try and see how it turns out.
Michelle, it has been 8 years for me, and I still struggle regardless of the "bouncing back" By bouncing back I only meant that you are moving forward; be it by by necessity or whatever other reason. Good for you!
I'll let you know how the variations of the coffee cake turn out.
Judy, I also have an inexpensive version of peach cobbler and a peach crumble (has a struesel like topping and no bottom crust; great with ice cream!) if you are interested.
Dawn
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I'm with you Michelle! Raspberry Coffee Cake sounds great! Can I get the recipe TS.
i have a knack for making even the cheapest coffee taste pretty good. I seemed to have passed that knack to both of my daughters as well. But, my only recipe for coffee cake (which was pretty darn good) I lost when moving this last time, along with a lot of my other recipes. My oldest daughter and I are trying to rebuild our recipe "box".
Michelle, could be you're just a little scared of the unknown of the new job and training. Your self confidence took a hit when Donald passed, so your feelings are understandable. At least you have bounced back quicker than I did after my husband passed away. Took me 6 years to get mine back and then when I did get it back, cancer came strolling in the door. I had to cancel 3 job interviews the week I got dx'd as I could not walk at that point in time and just knew that being wheeled into an interview would not create a good impression, lol.
Good luck with all of the training and the new job.
Dawn
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Gemma,
As far as SS, since there seems to be some differences mentioned, the best thing I can suggest is to call your local office (you can call the 800 # and get the phone # and address or possibly get it on line) and ask if you need an appt. and actually go in and see someone in person.
I do know you must have no income for SSI and that the SSDI has a back to work program that allows you to keep your benefits while either undergoing training for a new job or trying your old job to see if that would work for your new altered abilities.
But as I said all the other stuff it might be better to actually talk to a live person in person. The government is rife with individuals that don't have all the information or give out old information (since the laws change frequently) and at least when you talk to them in person they can show it to you in black and white.
I usually have to call them once a year to find out any new information or to give them new info.
Dawn
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Gemma,
Contrary to popular belief, most of the VA med centers do provide comparable care. Here in Dallas onc. patients are seen by Onc. fellows from UT Southwestern under the supervision of the Head of the department.
The one thing that I have learned is to stay vigilant and to make sure to push for what I want, and to ask questions until they are blue in the face answering them. I also make sure that they answer all my questions. The Docs and staff in the Heme/Onc section do take the time to explain, and make sure you understand as well as the nurses who run the chemo section.
To get medicaid/medicare you have to apply for both SSI and SSDI (supplemental Social Security and SS Disability)
Apply for both at the same time. If he qualifies, he can get the SSI for the five months that you have to wait for SSDI to kick in. He would qualify for medicaid during that time. Once SSDI kicks in after the 5 month waiting period is up the medicaid/medicare goes away for 24 months. So to be honest you best bet is to go for the VA unless you want to spend the 24 month waiting period for Medicare to kick back in paying out of pocket. Or hunting financial assistance (which is out there. There should be a links page here on lungevity to take you to websites that assist with treatment and care payments).
Your hubby should not have to a long a wait to determine eligibility for SSI/SSDI as all lung cancers are automatically considered disabling. The Social Security Administration has a web site and all disabling conditions will be listed under a page under the disability section. Oh! and to receive SSI, he can not have any income or very little, but that information is also listed. Here is the web site for them.
Hope this is of use to you.
Dawn
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Gemma.
Hi, glad you found us, and that Randy gave me a heads up.
I receive my treatment from the Dallas VA med. center here in Dallas, tx. All VA med centers are a bit different in their attitude towards patients, so each individual's treatment, personal and medical will be a little different. Since I have had a "complete response" (that is what they call remission for people diagnosed with ext-Small Cell lung cancer like I have) I am finding the attitudes of the clinic personnel is starting to change and not be so accommodating. However my hemetology/oncology folks are still just as nice and eager to help as always.
I know you probably have a lot of questions, so please feel free to ask me anything. If I don't know the answer, I will be glad to find out for you.
I can tell you if your Husband spent at least 180 days in the service(regardless of Branch) and has an Honorable discharge he can be treated at the VA. He will have to complete a means test (monetary evaluation), to see if he is eligible for for free or has to make co-pays.
You can get all the help you need from a Vet rep. These are the people who help with Veterans claims for compensation.
If your husband was ever in Vietnam (ie. feet on the ground in country) he automatically qualifies for compensation for lung cancer under Agent Orange exposure. A vet rep will help with the claim.
If you have more questions, please feel free to PM me here at Lungevity.
And Randy, Easyrider is Bud. My handle is Outrider, lol.
Dawn
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32 but sunny here in NTX this morning. Most of the snow is gone, but we still have icy patches on the street. That should clear up today and by Friday projected high is supposed to be 61, but more rain over the weekend and the middle of next week.
It was sure nice to get power back Sunday. We lost power very early Friday am and finally got it back about 48 hours later. We spent the weekend with my son and his girlfriend altho we couldn't bring the furbabies. We made them as comfortable as possible and came back and checked on them often and threw lots of blankets and comforters down on the floors and couches so they would stay warm.
Looking forward to going to support group next Monday and meeting Katie, Bud, Bud's Rose and any others.
Looking forward to 50 degrees this afternoon. Hope all of the rest of you have a great day and stay warm.
Dawn
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Last Friday was my consult with the Onc. The only change has been in my right hip where they thought was a new metastasis. This scan it had disappeared. The only thing going is very low level activity in my left hip and femur which has always been there and they are not sure if it is inflammation or cancer activity. They have bumped me out to every three month checks instead of two.
They also rewrote my consult for neuro since the radiologist still states he sees de-myelenation (deteriorate of the myelin sheath around the nerves in the brain) and no cancer mets seen.
So as far as SCLC is concerned, I am considered NED stiill. I'll take it and work on the head issues until I get to see the neuros and we can discuss this further.
Still counting my blessings!
Dawn
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Good morning everyone. Still 34 here in NTX. with a projected high of 45. But at least there is no wind and the sunshine is struggling to make it through the clouds.
Judy, Ned, and Muriel; I am right there with you. I have a pet scan on Tuesday and not scheduled to see the Dr for 10 days after. I think I will change that appt. while I am there on Tues and get it set to a little closer date.
Bud, I hope that you get to go fishing. I am just getting my first cup of coffee this afternoon. Like Judy, the past couple of nights I have not been able to go to sleep or stay a sleep so my hours are off.
I hope all of you have a good day and are blessed with some sunshine.
Dawn
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Becky,
Can we plan a pit stop at the beach on the West coast? I want wriggle my toes in the sand. Haven't seen or been to a West coast beach in many years.
Dawn
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Muriel,
Not all of Utah has snow in the winter, however they have sun and we can set up some sort of windscreens and heaters on the top of the bus so everyone can enjoy the sunshine w/o freezing.
Also the southern route may be a tad warmer, but we will have to consult Becky on what route to take. Are we making a pit stop at the beach? If so that is where we can change drivers.
Dawn
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Karen,
Get on the roof girl...the rest of Az and Utah should be good for some rays. Who is the next relief driver? Cause once we hit CA. I have no clue of where to go and my legs are getting a little tired.
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We're still in Tx. It's A big State, lol. But we are headed west. We are still missing Katie, but I set her up with tickets to get to LAX in LA and will just drive this big ole blue bus right up to the terminal and pick her up.
Becky who do we pick up next so I can pull out my map and find them?
Don't worry Judy, I know where you are. You startled me we you just suddenly appeared out of thin air...lol. but that's okay, I was waiting on it! I see you back there waving!
Dawn
Update to "Test time again"
in MEMBER UPDATES
Posted
Well its seems as far as my maintenance scans go and the MRI of the head all is still the same, no regrowth just the same very light activity as usual. So that means still NED for my type of cancer. As for the scan on my liver, I am just now finding out about two spots that have been there the whole time since May 2008
. The radiologist suggested one was a hemangioma which is a cluster of blood vessels and has been there since at least 2004 when I studies done prior to removal of an infected gallbladder. The other has remained the same throughout all the cancer treatments with no shrinkage or growth so suggests it is not cancer. So, Although I didn't know about the second spot till just now, I count that as good news. Nothing has changed in my head other than my migraines have added a little spice to my life by changing symptoms, along with the fact that there has been no change to the lessions on my brain which led the ONC. to declare that whatever was going on in there was NOT cancer and was probably MS (hallelujia!). I told him we needed to do something about it being stated as mets to the brain that is scattered all through-out my records and get a definative diagnosis in there but that I can't get the neurologist of his butt. All he does is throw his hands up and say "we just don't know what it is". Makes me want to pull what little hair I have right now out and punch him in the nose!
Also, I got to see a new Onc. Fellow, this time; new to me and new to the program. I do not like when I walk into the exam room for scan results, to be asked "well, what can I do for you? DUH!!?? and to also be told "well, I can't do anything about that, I am the oncologist(this in response to getting something done about getting a definite diagnosis and possible treatment plan for my head issues). And that they can not renew my meds for the migraines, which is such Bull-oney.
My next scans have been moved out to 4 months, which I am also not comfortable with given the nature of this type cancer. So if I seem to be venting, I am,(for which I am sorry to be doing so here) although I am happy that the scans came out well.
Now I am gonna take on the VA once again since I no longer seem to be getting the same treatment and have been demoted to non-patient status in the eyes of the clerks and nurses (as so stated to me last month). So if you see a short haired, short older looking woman with fire in her eyes running around the VA, it'll be me, lol.
Dawn
PS: I also lost 10 lbs, last month, without trying to. wish I had enough money to go buy some pants that fit,lol. Or still had my sewing machine so I could take in the ones I have. Guess I will just have to borrow from my daughters, lol. What a turn around!