michellep
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Posts posted by michellep
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I got a copy of my hubby's ct scan but they are having to re-do because they forgot to compare to the prior one. But I'm not that familiar with medical terminology, so if anyone knows please advise. I did google a bit on these but am still unclear. Thanks!
1. Multiple sclerotic lesions throughout the osseous skelton.
2. Possible right jugular vein thrombosis
3. Nonspecific nodules noted in superior segment left lower lobe.
4. Portal vein is patent
5. Bilateral adrenal gland nodularity. Spenule is noted left upper quadrant.
6. Atherosclerotic changes in abdominal aorta are present extending to involve iliac vessels.
7. Bones reveal multiple sclerotic lesions involving iliac bones, sacrum, lumbar and thoracic spine.
I could really use at least some kind of information if you would be so kind.
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I got the reports from the pcp a bit ago. I noticed that the imagining place "did not" compare to the prior ct scan from May. But I looked at these closely for any differences I could see for myself.
When my husband was diagnosed it was in the right lung with pleural effusion. The reports from the full body scan he had then showed all other areas were clear. The one I got today of the abdomen showed multiple metastases involving the iliac bones, sacrum, lumbar and thoracic spine. So......obviously here we go again.
It's difficult because as many of you know he will not discuss this disease "period" and I'm really feeling overwhelmed with all this information and not having the "needed conversation" with him. I still wonder sometimes whether he is in total denial or if he is just simply trying to protect me. Truth is....if it's protection, I don't need that. I need for him to share with me what he's feeling and let me do the same.
We have an appt with the onc next Wednesday, so I suppose we'll learn more then. And maybe they will have been able to compare to the prior scan.
Well, I've rattled on long enough to you guys for now. Hopefully you won't run when you see my name on so many posts huh?
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We got to use the machine today.....it's just AWESOME !!!!!!!!!!!! I think that "all seriously ill patients should have this available". It's so easy to operate and with the two way camera it helped him understand more on what to do because she would demonstrate exactly what she needed from him. It's just like having her in the room
Perhaps someday these will be available to use for doctor check ups as well? Thanks to all of you for the encouragement and support you have been giving me these past few months. You are the ones who deserve all the credit for my recent "courage and determination". Bless you all!
Michelle
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My hubby had his CT scan on July 29th and apparently the results arrived with the onc doctor this morning. I called and asked if I could see them and they said not until his appt with the oncologist which is scheduled for next week! I don't understand why we have to wait....makes me think it's really bad. Plus, the pain he is having in his liver area is just awful....I want to know if there are mets or not and I want to know NOW. Is this protocol that docs make you wait until your appt for results? Seems to me that we are entitled to get a hard copy now or am I wrong. Has this happened to anyone else? The waiting is torture. Besides, what if the liver pain is just an infection...shouldn't he be on some kind of antibiotics? I'm really annoyed about this! Think I'll call the pcp and see if he has the results. He's much easier to negotiate with!
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A time line on grief is impossible. It depends on the person who is actually grieving. My mom died on cancer in 1987 and I still cry for her.
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Carol, I myself have diverticulosis. It's no fun but if you learn to manage it, you'll be fine. Certainly avoid all nut and I would highly recommend MiraLax. It's very gentle and will help you a lot!
Good news!
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WOW Linda....that's just wonderful news! I hope you do something to celebrate the NED .....that's just great and I'm happy for you!
Michelle
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I'm beyond thrilled that we "finally" got something without a battle. Perhaps it's because the Ins Co wasn't involved? duhhhhhhhh Anyway, I'm looking forward to our first tele call in the morning
Speaking of the Ins company.....you will ALL be soooo proud of me. When I took hubby for Tues chemo they told me that Ins had not paid a dime. And that in order to continue, I needed to at least pay for May 2009 of one treatment. So, I thought, well, okay.....I'll pay it and then call the Ins co right? Well, guess what? The bill for "One" treatment was $11,653..00. Good Lord! I calmly said....nope....then went home...called the Ins. Co and "calmly yet firmly" demanded the bill be paid before next Tuesday. Anyway, the onc's office called today and said they had been "Paid in full" via a wire transfer and that if I ever wanted a job....call them. So funny because I'm a bookkeeper (at least I used to be before this journey). Anyway....I'm just having a very happy day today and wanted to share.
PS Hubby is feeling great today too! ( but then he doesn't know I've been giving him an anti depressent either)
Bless you!
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The Visiting Nurse came and installed the tele health unit today. It will be run through our current Fios line. We have a daily scheduled appointment as to when she will be calling. (We have caller ID anyway, so we'll know it's her). There is a Cam on the computer so she will be able to observe him while he uses equipment currently attached to the system, weight scale, stethoscope, oximeter, blood pressure cuff and also something that they will train me on tomorrow that will perform and EKG. He can test himself between calls if he wants and it will all be uploaded to their database. Also, all vitals etc can be accessed by his doctor or myself at anytime. If the nurse sees something that requires immediate attention she will contact his doctor immediately. As far as who pays the doctor I was told this is all paid for through the Federal Grant.
I feel so much better now knowing that he can be observed on a daily basis (including week ends). In his current physical condition it's very difficult to transport him. I do that with weekly chemo and X-rays, but this is comforting. It's almost like having a nurse right in the room checking on him.
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Wanna hear something funny? I was just thinking....oh my....what if the computer's cam is on while I'm walking around in my pj's? Or worse yet, if my husband is peeing in the urinal cup?
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I'm so excited and happy. After many denials for home nursing from the insurance company ( or just one visit) I found out that the Visiting Nurse Assoc has a Federal Grant for tele-health. The insurance and/or medicare pays nothing and neither will you. I got a call this morning and they will be here to set it up for us on Wednesday. See article below:
Technology plays an important role in all of our lives today and especially in health care. SMMC Visiting Nurses is taking advantage of the ways technology can improve patient care through our Telehealth Program. Here is how it works:
* Jan Prewitt-Small, RN, our Telehealth Nurse, will set up our "Well-at-Home" device in the home of a patient who could benefit from daily monitoring of vital signs. We can check blood pressure, pulse, temperature, weight, blood sugar or blood oxygen levels. The device is easy for the patient to use. Data is sent over the phone line back to the agency where the nurses can remotely keep close watch on how a home care patient is doing. The system also allows the patient's doctor, or even a designated family member, to see these vital signs through a protected website. This feature is ideal to reassure adult children, who may live outside of the area, about their elderly parent's ongoing health.
In addition to the monitoring of vital signs, the device can also be set up to remind patients to take medications or when/how to follow the doctor's orders. It will also ask the patient to respond to questions about how they are feeling and provides education about their disease and why they need to take the medications ordered by the doctor.
Happy dance....Happy dance
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Oh Lisa.......my heart just breaks for you. I hope you continue to come back here and talk to all of us because we really do care about you and how you're feeling. The emotions will come when you're ready dear.....just try to focus on all the good times you and your daddy had together. Remember all the funny times when you laughed together and even the times he scolded you for something you did wrong as a child. Those loving memories are what will sustain you Lisa. Not the moments of his suffering. I don't think that he would want you to remember those final days either. I will say a prayer for you dear one. Please be kind to yourself.
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"ts"]My Dad has a wound that needs daily care - and while we appeal the decision to stop sending home health care through insurance (Medicare), he is paying for private service - $92 per visit! It probably takes half an hour, at most. He'll be eligible for Medicaid really soon at this rate.
Ts, if your dad is on medicare and his physician states that it is "medically necessary for him to have a home nurse to care for his wound", then it can't be denied. This is a federal law.....I learned so very much about this myself. Below is the link to the topic "How to get a social worker". Read these many posts and you will certainly learn to fight the insurance game like I did.
When you file the appeal with medicare make sure they know you want it expedited otherwise it could take weeks. Let me know if you have any questions because I have lots of answers from my own experience.
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I'll be praying for you my friend. Please take care of yourself and keep us updated because as you know.....we care
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Yea, seems nothing is cheap anymore huh? That's okay though. Being in the house 24/7 excluding ER visits and chemo trips, there really isn't anywhere I'd rather be than with my hubby whom I love with every fiber of my being. I'm just telling myself that when he gets crabby, it's either the illness or the meds, it's not the man I love. That gives me comfort ya know
He's really starting to have a lot of pain in his liver area now. It was good for about two days and this morning he asked for pain meds. I had to switch from darvocet because it's loaded with tylenol....even more so than vicodin. Sure hope the ct scan results come back soon. And I'm especially praying that it's not mets. I'll keep you all updated as soon as we hear.
Judy, when will you be getting more news? I'm so sorry to hear the fluid is back. I know my hubby really suffered with that. Especially the chest tube part.
Have a great week end....what's left of it anyway!
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Randy.....you are too funny! At least hubby only has two days left of the prednisone.....good thing huh?
Judy.....I called the Visiting Nurses....they want $52 hour. Unless I can rob a bank and run really really fast...no such luck. Besides, I doubt he would agree to have a stranger sit with him. I know it's hard and I get really tired and desperate for relief, it's better than worrying about him every second I'm away trying to enjoy myself, which I don't think would happen.
My enjoyment right now is talking to all of my dear friends right here!
Thanks love!
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"Nick C"]Can I ask a few questions?
Is he just on Prednisone? I'm not familiar with that altering someone's personlity like decadron does.
Which leadds to my next question...is he "different". Not trying to be rude...but was he always a bad patient. I am a crappy patient myself. But does he seem like comepletely not himself? Which leadsme to my next question.
If he is being very unlike himself...is it maybe a good idea to get an Brain MRI? Just trying to think of all the possibilities.
Sorry to hear there isn't another alternative for caregivers to give you some time off.
The only steroid he is taking is prednisone. They gave him that to help with his platelets dropping from the Gemzar. As far as him being a bad patient prior, no, he's always been kind and patient in the past when he was ill with something.
I too have been thinking about a brain MRI because he is so confused and forgetful sometimes. We just had a CT scan of the chest and abdomen a few days ago and I have no idea when the results will be in. Everyone tells us something different about the time line.
Yes, I too wish I had some relief once in a while. I would love to just do something maybe an hour a week? But then, I would probably just feel guilty if it happened huh?
Thanks for your post..........I really appreciate any and all inputs I can get from you guys
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Nope, medicare won't do both. Sure would be nice if they did though.
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Thank you everyone! Yes, hubby is on prednisone, but he only takes it on occasion so I'm not quite sure if that's the culprit. He seems to be demanding all the time. I'm also wondering if it isn't because of the fact he refuses to discuss his cancer whether it be with me or his doctors. I know much much more about his condition that he does. It's an awful burden to carry all of that on my shoulders alone. I've tried to discuss his disease with him, but he just cuts the conversation off and sends me away. He spends all of his time in the recliner chair either listening to music or watching baseball. His doctor did prescribe Paxil for depression and I had to tell him that new pill was a vitamin because he won't take it if he knew. He's only been taking them for a few days, perhaps it will kick in soon.
I know that my frustration is normal under the circumstances, but listening to him complain because I brought a yellow straw instead of a blue one for his ensure is just......ughhhhhhhh When I gave him scrambled eggs one day he said, I only eat these with a spoon now....next day....I only use a fork for eggs. Soooooo Smart A** that I am, I brought everything....fork, spoon, butter knife, steak knife and a large butcher knife. He just gave me a dirty look! ha ha But, it's a long long walk in our house from the kitchen to the bedroom and honestly I must run at least 50-75 times a day back and forth. Maybe that's why I've lost 35lbs?
As far as having someone stay so I can go somewhere.....nope. We just moved here a couple years ago and was surprised about the difference. People here just don't talk to each other, so we haven't had a chance to make friends. And his children (from a previous marriage) are just....shall I say selfish? They haven't been to visit their dad once since his diagnosis. They did call on father's day, but not a word since. Anyway, that's my story.....just like a soap opera sometimes. Hey.....is that soap "As the world turns" still on?????????? ha ha
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Well my friends...here I am again looking for advice. My hubby is just driving me nuts. He has good days and bad days of course. BUT, he is so very demanding that I feel as though no matter what I do...it's not good enough for him, fast enough for him, the food is too hot, right down to putting the wrong color straw in his drink! ( no joke) I have been surviving on 3-4 hrs sleep a day since last March. I certainly don't mind if he wakes me during the night for something important, but he'll wake me to simply (for example) measure out his cough syrup for him even though it's on the table next to his recliner (which he sleeps in). I feel like I'm the cook, the maid, the nurse, the gardener, etc etc etc. Plus we have a disabled adult son living with us. Granted our son can do many things for himself, but he too still needs assistance sometimes.
I tried talking to the hubby this morning and just said "honey, on your good days there are some things you can do for yourself and besides you need the exercise because your just going to turn into mush sitting in that chair all the time". Seems it went into one ear and out the other. Before I knew it he was telling me that I put too much milk in his cereal and that the juice I gave him was too cold. UGHHHHHHHHHHHH
I love him dearly and will always take care of him, but how do I get him to understand that I'm tired? How can I get him to realize that there are certainly things he can do himself (only on a good day of course)?
Just typing all of this....I feel a little bit better! ha ha
Comments welcome dear friends!
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Congratulations Bud! Hope you and you're wife have a great week end!
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My Dear Barbara...I read the story of the journey with your husband. It has been such a long one for you both and it brought tears to my eyes thinking of everything you two have been through. And then I was thinking that I myself must be so weak compared to others . I do indeed gather strength from each and everyone of you each time I read about your journeys and will continue to do so....at least I hope anyway. It's so darn hard to do this for me mostly because my husband "refuses to discuss cancer with both me and his doctors". Which leaves so much on my shoulders because the doctors have no choice but to tell me alone. I have a few friends that I can talk to, but none of them have ever dealt with cancer so obviously they truly can't understand. I just feel so darn alone sometimes and so overwhelmed with all this information. It's been far more than a blessing to find all of you...the only thing missing is someone to physically put their arms around me and say the usual " everything is going to be okay"......perhaps empty words, I don't know....but just those "arms" would be great.
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Thank you all for your kind and powerful words of encouragement. That's something I need very badly right now. This wasn't the first time the doctor suggested hospice. He mentioned it to me right after the diagnosis too. It's so confusing to me because I've read about many others here that have had worse cases and were diagnosed years ago. I mentioned those cases to the doctor and he basically said that those people are maybe one in a million. Well, geez maybe we're one in a million too, right? I also asked his opinion on the idea of myself having a ct scan (paid by me of course) just to make sure all is okay and he said that even if they did find cancer it wouldn't change the prognosis. SAY WHAT??????????? (By the way these are words from the pcp, the the oncologist)
There are only two oncologists here where we live and the other one I've heard awful things about. The one we are using now I've heard good things about and I believe he is very experienced, so if it turns out that my hubby has liver mets I will ask that we continue chemo. I just hope the insurance company doesn't deny us like the seem to have a habit of doing to us.
We did go for the ct scan today and should hear something soon I hope. Hubby is still having pain in his right abdomen which worries me. And I'm wondering...he did have an ultrasound last week for that pain and they only said they saw inflammation and prescribed antibiotics. Said nothing about seeing anything else.
I'll keep you all posted on the results....and please let me thank all of you again for your encouragement. I don't know what I would do without you!
Warm wishes and prayers to everyone
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Hubby has Ct scan scheduled for Wednesday. The onc and his Pcp both believe the disease has spread to his liver. They said that if indeed it has they recommend all treatment stop and hospice called. I'm going out of my mind with so many emotions. My hubby doesn't know any of this information. They told me privately because he refuses to discuss any of this with them. They told me that I need to "force the conversation" with him privately. How do I do this and where do I begin? I'm thinking that I have to at least wait for the Ct scan results because that would just be cruel to do it now. Has anyone out there dealt with anything like this themselves????
The doc also prescribed anti depressants for him and I know he won't take them. He needs it yes, but I'm going to have to lie to him about what these "new pills" are really for. (He analysis each and every pill I give him).
Advice on how to approach this conversation would be appreciated. I just don't know what to do.
Perhaps someday these will be available to use for doctor check ups as well? 
New member with lots of questions, please help
in INTRODUCE YOURSELF!
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Hy husband also has non small cell andnocarcinoma stage 4 and we were told radiation was not an option either. When I asked why, the onc doc just shook his head and said we don't do radiation if it's past stage 3. I too still have questions as to why not myself. Good luck to you and keep us updated on your journey.