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NellW

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Posts posted by NellW

    Update on Bob, very rough day.

    in GENERAL

    Posted

    I wanted to come here and lean on you all for a minute, I feel like I need your prayers and thoughts for Bob and Jo.

    Today we went (Bob, Jo, and I) to see his onc. and had a list of questions for him that we needed very clear answers to. Bob in particular helped write out these questions because he feels he needs to know what is happening and as much as possible, what to expect.

    The first thing we asked after he read over Bob's chart and asked some things of Bob and listened to his lungs was..

    What is his prognosis. He told us that it was 4-6 months from the diagnosis of the bone met.. so we are very short on time according to that.

    Then we asked if we could hope for any improvement from this point.

    He said no, and that right now is the best he will be, and that it will get harder from here. He says Bob has probably got a recurrence in the other lung, as well as some other bone mets. His breathing is getting harder to handle.

    His appetite is very small , and he struggles with constipation as well. His pain is not really under control.

    The onc. reccomended we begin hospice immediately, and they will be out to see us tomorrow. He says they will get the pain better controlled.

    Also, we were supposed to get a port for the Zometa, which he discontinued as well as the Lupron shots for his prostate cancer, since he says all that is irrelevant because the prostate would move much slower than the mets from the lung cancer.

    We sort of expected this kind of news because Bob has gone downhill so quickly in the last month, but it still knocked the wind out of all of us.

    They, along with Art and I, and their kids and our kids have cried on and off all day, but laughed on and off too about little silly family things that would pop up and tickle all of us, especially Bob.

    It's another phase of the journey, and we need your prayers .

    Love

    Nell

    Good Day, Bad Day, Sad Day

    in GENERAL

    Posted

    Ginny, The good day is really good! So quick to sell and for the price you asked. I can imagine since we built our house how that might tear at you, but as everyone else and you yourself said, Earl will go with you.

    I think the Eagles did give them a run for their money, hope they do it next year.

    Love

    Nell

    Thanks for all the input and another ?

    in GENERAL

    Posted

    Thanks friends for the kind words and thoughts and prayers. It has been a rough road lately. Jo will be talking to the onc the end of Feb when they have the next appt. about hospice, unless things get so rough that they go back before that. Right now he is seeing the onc every 3 or 4 weeks because it has been such a hard thing to get this pain under control.

    Ry, I will PM you since it is pretty late and we just got in.

    Elaine, I wondered how much Neurontin you were on. It's at least twice as much as Bob, and I am not sure if his pain is the right kind for it, but since Kimme, you said it helped you Mom, well, we are sure hoping. And I agree, it seems just nuts for the doc to think the pain clinic would not help. Maybe we can bring that up again if things do not turn around in the next couple of days.

    I know Peggy, it doesn't seem as though he should just have to endure this much pain. I guess someone told Jo at church last week that if the met is in the bone, there is no help for the pain, but I know some here have been able to function quite well with bone mets, so I can't give up hope!

    Dodging the beer truck a little south of you Bec!

    Love

    Nell

    Thanks for all the input and another ?

    in GENERAL

    Posted

    Thanks everyone for all the tips on med distribution.

    Art and I went to spend the evening with Bob and Jo last night, and took a pill box I found at the big pharmacy near us. It holds a weeks worth of pills with 4 compartments under each day, and since he takes meds 4 times a day it worked well. She will dispense them each time he needs them.

    Jo and I did the pills in the box for the next week, and then we did one for during the night which he will have near his bed.

    It was a rough day for them both. He has just added Neurontin and has begun Zometa, and seems very confused and out of it.

    He is taking 4 300mg of Neurontin per day. Does that seem like it could be the cause of the confusion?

    He went to bed very early because of the pain. Took a dilaudid and prayed for sleep.

    Jo is totally overwhelmed and she just started to cry after he went up to bed( she had to help him get there), because his quality of life is so bad.

    We listened to the tape of his last onc visit on Tuesday with her. They always tape them so we can hear and they can listen again at home if they are confused.

    The onc sounds very distressed that the pain is not being reduced with all these meds.

    They have never been told anything like a prognosis since the bone mets.

    Both feel they want to ask this.

    I did share with them that many here have outlived the time the doc estimated.

    Sorry this is so long, I can't sleep with thinking about all they are going through right now and wish there was something we could figure out to relieve this.

    Doc said not likely that a pain clinic would help, so that was a disappointment, although Bob is so miserable I don't know if he would even go. He is not walking at all of course, so Jo is worried about his muscles wasting.

    Well, I will go try and sleep. Any input is a blessing.

    Love and prayers for all

    Nell

    Bob's wife Jo has a question..

    in GENERAL

    Posted

    Good morning! Jo just called and asked if I would post her question. She is concerned about all the meds Bob is on getting mixed up.

    I think he is still managing his own, and yesterday the onc added Neurotin and Zometa ( of course the Zometa is not a prob ). She just thinks there are so many things he is taking and at different times, so she wondered if anyone would have an idea on how to keep them organized so no mistakes are made??

    He is on duragesic patches, dilaudid, motrin, neurotin, zometa, and all his regular meds besides.

    She thinks due to all the stuff he is on he is getting very drifty. I noticed last Saturday that he is somewhat confused at times, and wonder if he should not be administering them to himself right now. Feedback is needed!! Don't know what we would do without all of you!

    Thanks

    Love

    Nell

    The Bar is OPEN

    in NSCLC GROUP

    Posted

    Well I would like to join this bash if it is not too late.. Yipppeee Cindi, good news is worth a drink.

    I would like champagne please.

    But that Orgasma thing.. well, maybe I will try that too!

    Hi Friends, update

    in GENERAL

    Posted

    I know I have not been here much since Christmas.

    Art and I both have been quite sick. I have had pnuemonia and had an awful time recovering, but am finally after almost a month getting better..whew!

    Art has a nasty kidney, bladder, and prostate infection.

    As for Bob, he is on duragesic 200 patches and motrin and dilaudid and still in enough pain that it wakes him up at night and is "ferocious" in his words. He is in his recliner almost all the time now. Getting up to use the bathroom, and that is about it. He no longer sits at the table to eat. Sees the onc again next Tues. and is hoping for some help with the pain, but not sure what they can do.

    Onc. said at the visit a week or so ago that all he can do is palliative care, and that he would not reccomend a morphine pump or anything because Bob cannot go under anesthetic to insert it. He feels all the pain is coming from the L4-L5 met.

    Both Bob and Jo feel his quality of life is pretty bad. We spent the evening with them tonight for the first time in a long time, because I have been to worried about taking any germs there with my pnuemonia. We have really missed them a lot, and it was a good visit. Took chili for our supper since it has been so cold and snowy and it seemed like a good idea, and we watched an old movie together.

    Missed you all and hope to be around more again.

    Love

    Nell

    First doctor visit to find out more on brain mets

    in GENERAL

    Posted

    Cheryl, I am relieved to hear you like the doc and that he has a good plan. As for the steriods and sleeping.. well I took heavy doses of them for a long time (months and months) awhile back, and sleep was not something I could do much of. I ended up taking 2 benadryl each night, and that did help a little. Sheesh, no kidding, lets put these pompous people on the steroids and then see if they sleep.

    I will be praying for you of course.

    Love

    Nell

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