MsC1210
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non small cell lung cancer, adenocarcinoma with bilateral adrenal metastasis, malignant peri~cardial effusion.
Also, dehydration, COPD and DMTI.. (I have no idea with DMTI is..)
So, I will be posting in the NSCLC forum now unless I have updates.
Thank you all so much for your patience with me while getting to this point..
Love and hugs
Chris
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Don
So sorry you've been having so many problems! Am very glad to hear you are home and I hope things will continue to improve for you now.
Warm hugs
Christine
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Debbie
I am so very sorry to read this news. Please know you and Alan are in my thoughts and prayers
Hugs
Christine
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Hi...
I figured I better start posting here before I get in trouble for being in the wrong spot on the forums. So.. here's the latest...
I went and spent several hours with Mom and Jerry yesterday. Mom had the Hospice intake worker and the oxygen people scheduled to come in and she wanted me to be there to meet them. I really am very impressed with the Hospice worker. She was very warm, caring and just a pleasant lady to deal with.
I have to say I was SHOCKED to see Jerry in as bad of shape as he is in and it hit me hard that Mom is in some very serious denial right now. I knew he was bad, how could he not be after all of the screw ups, all of the cancer in his body and all of the delays and other nonsense he's been through! He is so weak that he was in a recliner and had slipped down in the chair and could not even pull himself back to a comfortable position. He has no voice, speaks only in a whisper between the raspy rattling in his chest and even just sitting still he is short of breath. I am just heartbroken and so very, very sad.
Anyway, I spoke with the Hospice lady, and she mentioned that Mom seems to be skirting reality a bit. I told her that I see that too and how surprised I was to see Jerry so bad. Mom had not quite been accurate in telling me how sick he is. Geri, the Hospice worker, told me that Jerry had actually checked himself out of the hospital. He apparently was not discharged as Mom had told me. And, Mom is telling everyone that he is going to be fine, he is on the chemo now at home (meaning the Tarceva) and that as long as he will eat and drink he will be just fine and this will all clear up and go away. Wow. Geri and I decided that for right now we will just let her go, this is her way of coping for the moment and she IS there and taking excellent care of him, so for now we will just leave this element alone.
There is a registered nurse coming to evaluate Jerry and change the dressing on the bedsore and make sure his meds are ok and just do an overall check on him. I am not sure how often he/she will be coming in yet but it is a relief to know that someone will be keeping up with things.
I have a list of the meds he is taking and OMG... it is 2 pages long! It seems that every med he gets needs another med to counteract the side effects. ugh...
I am really sorry that this is so rambling and disjointed. I am still reeling from yesterday and trying to get my emotions in check and stop the memories of Brad from creeping back in. Not doing so well with any of this but I will somehow manage. I hate this so much. I keep hearing my grandmother saying God never gives us more than we can handle.. I am beginning to wonder about that....
Thanks for being here..
Love and hugs
Chris
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THANK YOU THANK YOU THANK YOU THANK YOU..
I am going to be leaving in a few minutes to go spend some time with Mom and Jerry and will post later when I get back home. Mom has a ton of papers she wants me to look through with her so I am sure I will have lots of questions once I get done.
I cannot put into words how much all of your replies have meant to me and to my Mom and Jerry. She is reduced to tears, as am I, when I read them to her and it just really is appreciated so very much.
Hugs, love and my sincerest thank yous!!!!
Chris
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Mom just called me and she AND Jerry are HOME!!!!!!!!!!! He is very glad to be home and was actually eating when Mom called.
I have a bit more info tonight and will get the rest tomorrow when I am able to sit down with them and go through the paperwork and meds and all.
I CAN say, he has been officially diagnosed with NSCLC and he is on Tarceva. I am not sure if this is standard first line treatment? Anyone? I am sure that I will be able to learn much more now through the NSCLC forum here as well as track down more on my own, too.
Thanks so much for putting up with me while we got through this first nightmare stage. I am so grateful, as are Mom and Jerry for all of your wonderful and thoughtful responses
love and hugs to all
Chris
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Up down, up down, up down.. here we go again. GRRRRRRRRRRRR and AAARRRRGGGGHHHHHHHHHH....
Mom called me this morning absolutely furious and hysterical. She was so angry with Jerry and the hospital she could hardly speak. Jerry was supposed to get the first chemo drip yesterday but was so dehydrated again that they could not and would not give it to him. Instead he is back on a saline IV and having tons of blood work done and is just not doing well. Mom was so upset! We had really been hoping to get him home today but this is not happening.
I remember those angry days and can totally understand how she feels. She kept saying to me through her tears that if he would stop being so stubborn and drink he would be ok.. I know it is the frustration and the fear and the overwhelming emotions doing this to her. She was absolutely in melt down this morning just so upset. I told her I would come down and we'd have coffee but she wanted to go cut the lawn and do some errands and just be alone. I know her well enough to know that is what she needed so I did not press it. I just friggin hate this so damn much. It hurts so much to see her in such pain, to see Jerry in such pain.
Anyway, this morning they were doing more saline IV to get him rehydrated and from there they MAY or MAY NOT attempt the chemo again. And they also started him on prednisone yesterday.
Yesterday was so "up" and so hopeful. We have the V.A.'s hospice lined up and when Jerry is discharged they will follow Mom home with him in order to help her get him in the house and settled. Everything is there at the house now so at least we are that far ahead of the game.
Please keep the prayers coming....
Love and hugs
Chris
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Hi Guys
Well some news and some progress but still lots of questions. I'll take the progress though and run with it!
After another botched attempt at radiation last week, (the machine broke, again.) Jerry finally got his 5th and final treatment yesterday. He seems to have come through that very well with no complaints so far.
Yesterday he was also taken back to Albany Med to have the drain removed from his chest. Today will be the first chemo treatment which means that, yes, there is a diagnosis from the biopsy, but Mom has not been able to talk to the doctor to find out what it is!! Originally the doctor was planning to do a 2 hour chemo drip then send Jerry HOME. I was not really comfortable with that and voiced my concern to Mom. She spoke to the nurses about it yesterday and this morning the plan has changed. Now he will get the chemo drip as planned but they are going to keep him overnight again and as long as he does not have any bad reactions, he will be coming tomorrow.
We got the ramp built (such a plus being married to a carpenter!) and the wheel chair and walker, commode and shower chair are all at the house. Hospice through the V.A. will be sending a home health care worker to help Mom out with everything. I am just so relieved that he will be home and that will take some of the load off Mom. She has been going back and forth every day without fail and in the horrible thunder storms we've been having. I am almost as worried about her as I am Jerry!
Please keep the prayers coming ! Mom and I appreciate it so very much.
Love and Hugs
Chris
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I have not posted in a day or 2 mainly because I have not had the ambition to and also because it has been more of the same.. up and down and no answers.
Finally, as of yesterday, we got some elusive answers/information. Although Mom and I are still uncertain about the type of LC, we did learn that the biopsy is back and it is definitely LC and Jerry will be starting chemo, again we are not sure what kind but it will be in pill form. (This is what happens when the doctor comes in and talks to Jerry and does not leave notes for Mom. We will get the information today)
On a very, very bright note, Jerry should be coming home, maybe as soon as Monday. We are getting the wheelchair ramp done this weekend and making sure that everything else is in place. Hospice is coming to help Mom out one or 2 days a week but not in an end of life scenario. Just to make sure Mom is able to have a break now and then. And since my kids are out of school as of noon today, I am able to do much more to help out too.
I will update this later once I have the rest of the information, but wanted to say thanks again to all of you who've been so supportive....
Love and hugs
Chris
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Dar,
I am so very sorry. Please accept my heartfelt condolences and sympathies
Warmly
Christine
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I spoke to Mom this morning. Somewhere around 7 or 8 last evening the radiation machine was repaired and they took Jerry down for his second treatment.
We are hoping to be able to bring him home within the next few days and resume treatment locally. Mom and I are going to do some inquiring about getting things done at a different VA Hospital, too. There really shouldn't be any problem with that but we need to find out which facilities are PROPERLY equipped to handle cancer patients.
We are really praying for a good day today!!!!
Thanks to everyone for the love, prayers and support~ I am sharing the posts with Mom every day and she is just so thanfull for all of you...
Love and hugs
Chris
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Thank you guys...I am just at a loss for words at this point. I actually talked to a lady who has had a lot of experience with Veterans hospitals, both for herself as well as with her husband who has prostate cancer is is currently in treatment for that. His tumor is wrapped into and under and otherwise entwined in major arteries and is not operable nor can they radiate, etc and even HE has not been given a time line. They do not and will not deal with the Albany hospital though, soiely because of situations like this. On the flip side, I also have a good friend whose dad was treated in Albany for another cancer and he had nothing but good doctors, good care, good experiences, etc. It appears to be a crap shoot... you either win or you lose, there is no in between.
Anyway, once we can get Jerry home and set up with the local radiation center and the local infusion center, HOPEFULLY we won't have to deal with this place much, if at all. I THINK the option will be open to use a different VA hospital for any future tests, scans, etc. Much to look into in the coming days....
Again, thank you all so much for just listening and being here.
Love and hugs
Chris
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Just a quick update/rant.
Mom called me a little while ago and did not even want to talk.
First, yesterday while Jerry was having radiation the IDIOT doctor came and talked with Mom. This guy sat there and told her that he was only giving Jerry 2-3 months, tops. She called me last night, hysterical crying and sobbing. I told her about so many of you on this board, how so many of you were given this same kind of crap yet you've overcome the odds and are still here, living and fighting. I told her that this "doctor" is NOT God, he does NOT hold the cards, nor can he possibly know when Jerry's number may be up. I am SO ANGRY!
Today more crap! Jerry was taken down for radiation only to be brought back up immediately because the machine is broken and nobody has any idea how long before it will be fixed. AAARRGGGHHHHHHHHHHHHHHH
I'm really sorry guys, I am just so angry, sad, sick and stressed... We need a break that lasts a little more than 24 hours here and soon.. I am really, really worried about Mom but she says she is fine and refuses to see a doctor right now. I cannot blame her. Not after having been through this mess..
I am hoping to be back soon here with something that resembles better news...
Love and hugs to you all
Chris
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Sandra
I am SO sorry about this latest news. Please know you are in my thoughts and prayers and I am sending you every positive thought I can muster up right now.
Love and hugs
Chris
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Hi everyone and thanks so much for the prayers and support. Jerry had a good weekend, was comfortable and did well eating and drinking Ensure. His color is much better and the fluid drain has slowed down substatially.
I will talk to Mom later and get the latest update on things but wanted to check in and say thank you all so much...
Love and Hugs
Chris
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Patti
I am so sorry I am late in posting my good wishes and sending you tons and tons of prayers and postive thoughts! Know you are in my thoughts though and I am praying hard for that "I GOT GOOD RESULTS" phone call!!!
Love and Hugs
Chris
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Jerry went back to Albaby Medical Center yesterday morning and had a biopsy done. Mom was unclear as to what was biopsied but said he has a patch on his back about half way down in the center. She said the nurse told her they had done a needle biopsy and that the results should be back in a day or 2.
Overall, he was breathing better and was picking at some food but was doing well on drinking the Ensures. Mom said his color was MUCH better as well. He does have what sounds like a nasty bed sore that they are trying to clear up now. Not too surprising as he has not been able to be out of bed since mid May.
Thanks for the continued good wishes and prayers. I really am hoping that we are on the right track now.... FINGERS CROSSED!!!
Hugs
Chris
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Jerry had his first radiation treatment yesterday and then was taken over to Albany Medical Center where he underwent the procedure to drain the fluid from around his heart. He also has a drain in place now and is breathing much easier. From what Mom could figure out they also did the biopsy on the adrenal gland while he was there. Apparently they felt it was an easier and safer way to get a sample from there than trying to get to the lungs. After Albany Med got the drain in, he was sent back to the VA Hospital.
Jerry had already spoken to the doctors and signed all of the papers giving his consent, being of sound mind, and making the decision ON HIS OWN, to do the radiation and he also has given consent for the chemo.
Mom had copies of some of the reports and they read, in part, as follows..
Inoperable Lung Cancer, type unknown. Lymph node involvement
Large tumor on right adrenal gland, upper abdomen
several smaller spots on both lungs
abnormal fluid in and around heart sac
abnormal puddling in bottom of both lungs
tumor obstructing airway and involving airway
Treatment will include but not be exclusive to, radiation to the tumors in the lungs and lymph nodes.
It still needs to be determined what type of LC he has before the chemo treatments can be discussed and put into place but we ARE, finally, doing something!
Mom said he was eating again, although not a lot last night and was drinking lots of Ensure. This is absolutely, positively a roller coaster ride right now and we are all just holding on tight and hoping and praying for the best....
I'll update again after I talk to Mom tonight.
Hugs to all
Chris
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Thank you all so much for the posts today. I spoke to Mom earlier and Jerry was down having radiation this morning. I don't know what they were doing exactly but apparently he opted to allow them to do this.
Carole and Ned, thank you for the patient perspective. I guess I have not been clear and for that I do apologize. Jerry has been making ALL of his own choices all along in regard to treatments, tests, etc. We have not made any effort at all as family members, to influence him. He is of sound mind and he knows what he wants and what he needs to do. We would never press the issue of making him have any kind of test or treatment that he did not wish to have. He does discuss things with my Mom of course but other than that, this is something that as long as he is mentally able to make his own choices we would never, ever step in and try to change. I do appreciate your input and I really admire both of you for your courage and strength. Thank you so much...
Chris
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The news is not good. After having a fairly decent day on Tuesday, Mom got to the hospital yesterday and found Jerry very uncomfortable, refusing to, or unable to eat. The IV had been removed for some reason although nobody seemed to know why.
ANYWAY.. before Mom got there, they had done a full body scan. She did not know if it was a CT scan or PET, but the results were horrific. The cancer has spread now, definitely to the left lung, the adrenal glands and the kidneys. He has a large build up of fluid around the heart which has to be drained. They want to do that and leave a drain in place.
The doctor wants to biopsy the adrenal gland but.. now this absolutely baffles me. They want to send him from the VA Hospital in Albany, NY over to Albany Medical Center to have this done. The problem is, once again, he is probably not strong enough to make the trip.
Jerry told Mom that he cannot do this. He told her he thinks she should contact Hospice and get things in order as he just wants to go home and die in peace. I am so heartbroken. My Mom is just torn apart and it is killing me watching her have to go through this. We are hoping that by some miracle Jerry will feel differently this morning and let them do something to drain the fluid from around the heart as that will surely make the breathing easier.
Right now things have, indeed, gone from bad to worse. Please, please keep the thoughts and prayers coming. I am just so scared and so heartbroken... I HATE CANCER, I HATE IT SO MUCH!!!!!
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Hi Everyone,
Well I THINK this is progress.. Mom said Jerry actually was eating today, although not a lot, it was more than he had been able to do before. He remains on the IV and tomorrow there is a conference scheduled with 3 of his 4 doctors. I am just guessing it will be his oncologist, pulmonary doctor and his radiologist.
The main doctor is using sputum to get the information about the type of lung cancer and treatment will begin PROBABLY by Thursday. Anyone have any information about this sputum test????
The ear, nose and throat doctor was in this morning and did a full exam and determined that there is no cancer in the throat, BUT the vocal cords are paralyzed, perhaps from being pinched. Also, they did an ultrasound on his legs that came back OK apparently as nothing was mentioned about it. ****The ultrasound was to check for blood clots in his legs as he has not been able to walk in several days. They came back fine.*****
While she was there today, a social worker came in to talk with her. Mom said they are (FINALLY) making arrangements to get some equipment brought to the house so that when he goes home, Mom can take care of him a bit easier. She said they are getting a wheel chair as well as a commode and a shower chair for him as well as getting his Ensure and all the meds brought in and kept stocked for her.
Another VA representative came in today, too and brought Jerry a really nice blanket and some other paperwork about his rights (laughing here). Mom is not letting her guard down though as right now things are going in the right direction, we sure don't want to lose this momentum now.
One of these days I will be able to post in the right forum for the type of LC we are dealing with. Until then, thank you for your patience and your thoughts, prayers and support. We appreciate it all so very much...
Warm hugs
Chris
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Hi Again...
Before I get into the latest update, I just wanted to say thank you so much to those who have replied to me and offered advice, information and just overall support. I have always tried my best to be here and offer up what I could to those in need and never really thought I would be here needing to actually get back what I have tried to put in. I know that I have not always agreed with everyone and I am more than well aware that not everyone has agreed with me, but we are here for the same common goal; to support and offer hope and help. So to those who have been here, not just for me, but for everyone I say THANK YOU.
Ok, I tried to put an update together last night but I was so worn out and Mom was just exhausted both mentally and physically. I was having trouble putting words together and making sense and she was even worse.
Jerry has been admitted to the hospital as of yesterday. He was, once again, severely dehydrated and was physically unable to have the bronchoscopy done. The doctor at first wanted to send him back to the ER and then HOME.. Fortunately that was shot down IMMEDIATELY and he was admitted.
Mom said that the doctor was shocked at how much Jerry has deteriorated so she pointed out to him that we have been waiting for SIX WEEKS now to get things going. He had no real excuse for that. From that point on Mom said there had been a steady stream of doctors and specialists in and out. She said the oncologist is a lady and they ALL liked her a lot. She wants to fight this and that is exactly what Jerry wants to do. At one point the first doctor actually said to my Mom, in front of Jerry that maybe she ought to consider doing nothing and letting him call in Hospice. Jerry managed to shout out at the guy NO!!! JUST GET THIS MOVING AND LET ME FIGHT!!! (I think this doctor should be slapped up side the head a few times...)
This morning the ear, nose and throat specialist is coming to evaluate the breathing/swallowing/talking issues. There is also a full body scan scheduled but Mom was not sure if it is a CAT scan or a PET scan. She only got that they are now worried about the liver.
As for the biopsy.. if they do not think that the bronchoscopy is feasible for today they will be doing a needle biopsy so we can get things rolling treatment wise. Once they determine the type of LC they will begin the chemo and/or radiation ASAP.
Mom did inquire about the feeding tube as did Jerry's son. The doctor said that IS a very good possibility but for right now, with all the scans and tests etc on tap, he wanted to hold off for right now. Being that they do have an IV in him now and he IS able to somewhat handle a clear liquid diet they are not immediately concerned about the feeding tube issue. Mom is going to keep that option wide open though and the doctor is aware of that.
So, I hope to have more definitive information later today.
Again, your thoughts, prayers and positive thoughts are greatly appreciated and I am passing all of this on to Mom each day.
Hugs and my deepest appreciation to you all,
Chris
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Hi Everyone..
Well the news is mixed tonight. Mom and Jerry got to the VA Hospital at 8am and the doctor came in around 9. He took a look at Jerry and said there is NO WAY he could do the procedure today as Jerry is just too weak and was not going to be able to withstand it. UGH UGH UGH. The doctor decided MAYBEEE he would send him back to the ER and rehydrate him then send him home again. Mom and Jerry's son who was there stepped in and said NO! After some words about that Jerry did get admitted.
Tomorrow he will be seen by and ear,nose and throat specialist to evaluate his inability to speak or swallow and then he will be having a full body scan (not sure exactly what type of scan, Mom was so tired she was having trouble reading her notes) and if he is not able to endure the bronchoscopy they will do a needle biopsy. So MAYBE, just MAYBE we will eventually find out what type of lung cancer this is.
Mom said it has been a constant parade of doctors in and out all day and there seems to be a good chance that they will be starting chemo and/or radiation within the next day or 2.
I will post again tomorrow when I am more able to compose my thoughts a little better.
Jamie, THANK YOU SO MUCH!! Yours was the feeding tube post I was thinking of and could not find!!!!! I will get into all of that tomorrow too!
Thanks so much for all of the thoughts and prayers, please keep them coming..
Hugs
Chris
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Hello and welcome Shedevil
Sending prayers and positive thoughts for you today. Hoping these nodules are nothing..
Warmly
Christine
The end is near..
in NSCLC GROUP
Posted
I am home for a bit and wanted to update.
Mom called this morning and said that Jerry had a terrible night. I went straight down and have been there all day. The difference from 48 hours ago is more than just shocking.
The Hospice nurse came in and we have now stopped all medications except for the morphine which is now in liquid form and his xanax under the tongue. Both are now being given every hour. The nurse took me aside and asked if my Mom realized what was going on and I explained that she has been in serious denial. We decided that it was time to sit her down and try and prepare her as the nurse has informed us that the dying process has begun and it is simply a matter of time.
We have met with the funeral director and gotten the preliminary details out of the way. What a heartwrenching ordeal to be planning someones funeral as they lay dying in the next room. I don't think I will ever, ever recover from this and be the same again.
I am not sure how much longer we have but it is very, very near the end.
I will try and update as I get the chance.
Love and hugs
Chris