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Keith update 4/19/06


Carleen

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This morning, 6:30 AM I took Keith into the ER because the pain in his side that he has been suffering from for the past 2-3 weeks has gotten substantially worse.

After about 7 hours in the ER where they x-rayed him, gave him a CT scan, and ran enough blood tests to drain a man, they were still left unsure as to the cause of the pain and what to do about it.

They did have 2 possible causes though.

The first potential cause is pleural effusion. Keith's pain is on his right side right below the rib cage. The doc saw fluid buildup in the lining in that area. But he didn't make it sound like there was a lot. He said that all it would take to remove it was a needle and they would be able to suck it all out with a needle. Can plueral effusion cause terrible pain especially with movement? The doctor suggested we talk to Keith's onc tomorrow to discuss draining it. I just think it is odd that Keith has complained about this pain for about 3+ weeks now, and his last scan was 2 weeks ago and nothing was mentioned about there being a pleural effusion.

The second potential cause is tumor growth. The doctor said that Keith's scan today showed "significant growth" from the last scan. This is so scary considering his last scan was only 2 weeks ago. How can he get SIGNIFICANT growth in only 2 weeks? The doctor said the tumors in the liver may be pressing against the liver lining/capsule (whatever that is?) and that could be causing pain. IF that is the cause there is nothing they can do for it. If it is the liver, they can really only try and manage the pain, but I don't know how that can even be done. While in the ER, they gave him 3 doses of Morphine, and it did nothing to cut through the pain. They then gave him 2 doses of dilaudid (sp?) which did take him from a 7/8 on the 1-10 scale to about a 5. But they said that drug is not available for self administered perscriptions. The methadone hasn't even touched the pain, and Keith has built up a resistant tolerance to oxycodone and oxycontin over a year ago. What is left to bring him comfort?

Keith has an appointment with his onc at noon tomorrow to discuss all this and see where we go from here.

His new onc is very nice, but not a LC specialist and he definitely doesn't seem all that informed. At our last appointment he never even made a single suggestion as to what else we could or should try next even though his cancer showed progression and growth. Even though Keith's poor body does need a break because he is just so worn out and exhausted, that is not the reason for not doing further treatment. He admitted he doesn't know what to do, and wants to consult with the onc we met with in Iowa to get his opinion on what to try next. I applaud his willingness to work with others and get opinions but it is taking so much time. Keith has now been off of treatment for 3 weeks and it appears his cancer is just exploding out of control. And we still have no plan of action.

I just hate this. It is just too hard and too scary and it is breaking my heart and killing me inside.

Even though I have struggled with fears and emotions, Keith and I have NEVER talked to each other about giving up, about him not being cured. Its always been positives about how we are going to beat this, even when there was progression the talk has always been when what do we do now to tackle this and beat it.

But today once we were home, Keith softly said to me "I'm scared". He said that he was afraid that he wasn't going to get better. He said it was ok with him if he was never cured, but that he just doesn't want to die.

What am I to say to that? How do I ease those types of fears when I myself fear that one thing more than anything? What do I do? How do I make this better?

I just love him so very much!!! This is just so hard, I would do anything to spare him this pain and this fear.

I know that many many of you are praying for Keith regularly. I ask please for continued prayers, and maybe if possible some specific ones that this pain be something that can at least be identified, treated and deminished.

Thanks

Carleen

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I'm so sorry, Carleen. I think about the both of you daily and really pray that you get the answers and magic bullet that you need. As far as the pain goes, what about a Fentanyl patch? That really was the only thing that helped my dad with his horrific back pain. It took forever for the docs to find the right pain med, and that helped him a lot.

Please know that you are always in my thoughts.

Cathy

Oh, the 25mcg patch did nothing. The 50 mcg was really the one the helped.

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Oh Carleen! I am so so sorry you and Keith have to deal with this you both are so young and such a beautiful couple.God willing you and Keith will have many more years together, life is so unfair I will keep you both in my prayers. Tommorrow morning before I go to work I'm going to stop at Church and light a candle for Keith and pray that the Onc will have a plan of attack for the monster that invading Keith. :cry::cry: I HATE HATE THIS DISEASE SO MUCH we need a cure soon!!!

Love to both of you!

Michele

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Carleen: I know exactly what you are feeling. I would say every bit of it. Since his onc has not offered any treatment plans, I think it might time again to hit the road and look for a new onc who can offer something? There is got to be something they can give him to keep this beast from growing. Maybe even a very minimal dose of chemo while his body is healing or recuperating from prior heavy treatments. My heart is bleeding for you and Keith and I do admire your love for him. At this time in my husbands life, I don't want to be away from him not for a single second if I can only afford not to go to work. My heart aches every time I go to work every morning. Carleen, I am holding Keith up to God right now. You stay strong for him, please.

God Bless

Love to you both.

Malou

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Carleen you just wrote th last 3 yars of my life with Deb. That is exactly what we thought the whole time during this fight. 3 weeks before she passed away she said if she saw the light she would go to it but would not look for the light. She was tired of all the fighting. You know what happened next. After she passed away I was running around cleaning 3 weeks later cause I didn't want to and still have everything odf hers by the way. I found a book from her religion entitled Conquering Your Fears By Sri Harold Kemp of Eck religion which is who she belonged to religiously. I know that this is a difficult time for you and Keith right now. I know how heartwrenching this is. You know we talked for a while in chat last night.

All RIght Back to Business. Hav eyou considered VideoConferencing a Call between Onc's FOr Input? If current is not LC Specialist maybe hook the 2 of them up through the hospital facilities to talk or at least a phone call between the 2 of theseOnc Dr.s. That would be my first thought for something.

PleuralEffusion can cause almost what some would call a heart attack complete with Shortness of Breath. DEb had the symptoms of a Heart attack and the surgeons drained like 8 Liters out of her. She felt so much better. She had a pericardial Effusion which is where thtey cut you and put in a tube to drain. Will do little digging and see if I can Find any more info.

Hang in there! Pray for the Best but prepare for the worst JUST IN CASE!! Always THINK POSITIVE!!!!!!!!!!

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Dear Carleen,

Like everyone else, I just don't know what to say, and I, too, am heartbroken that you both are going through this. I get very upset when I read of someone that has great pain like Keith's and doesn't get relief.

When my son was having severe pain from pancreatitis, he was also getting phenargen for nausea and ativan for anxiety. The phenargen made him very sleepy and that combined with dilaudid and the ativan, he could at least rest. The only bad thing was that all that made him an absolute zombie, which I found very disturbing.

At one time, they had to give him something to reverse the effects of the drugs because they couldn't wake him. They explained to me that pain control is very difficult for them sometimes because the danger of overmedicating is always there.

Anyway, if you could get prescriptions for some of those things, it might make you a little nervous if he zonked out for a while, but if it would help to have some relief even for a short time, it might be worth it. I suppose it would probably be best, though, for him to get combinations of drugs like that in a hospital or nursing care environment.

I'm rambling, but I just hate to hear that he isn't getting relief from the pain.

I don't know what you're supposed to say when Keith says things like he did. It's probably best to just hold him and agree that you're scared, too, and you don't want him to die either. I think he's just expressing his feelings, and not really looking for answers, just someone to hear him. There really are no magic words to say. He knows he's in trouble and he's scared - who wouldn't be!

Gosh, like I said, I know I'm rambling, but my mind is reeling trying to think of something else to say to you that might help.

Just hang in there, honey. I know it's hard, but I know you can do this - I just know you can!

Love, hugs and prayers!

Peggy

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My dad said that once- and it silenced all of us, and riped our hearts to pieces.

No one wants to die. He needs you to lean on, and to comfort and love him during this difficult time- like you always have.

Once a new plan is in place, there will be a feeling of hope again for him. He will feel better once he gets a plan and some options.

I agree with the others. Don't just wait. Call as much as you can. Many cancer centers will talk generally with perspective patients about treatment options and clinical trials- which you can then bring to the table with your medical team.

A phone conference is a good idea as well too.

Let me know if you need a conferencing service. I will let you use mine.

My prayers continue for you both, and I am hoping and hoping and praying for pain relief and a plan soon.

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Oh Carleen -- so many prayers tonight for pain relief and a plan. Have they tried fentanyl yet? The Duragesic patches and Actiq suckers? It was the only thing that worked for my mom -- and a morphine pump -- nothing else touched the severe pain she had.

Prayers and many more prayers. You are so string and so is Keith.

Holly

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Carleen,

There are so many "things" anatomically in that area that can confuse even the best of the diagnosticians. Please don't dwell on the liver mets. It could be, but there are so many other things that it could be also.

Some people do experience sharp pains with a small effusion. I didn't. I did have shortness of breath with mine.

With liver problems and pain as he has been having, I would think he would be jaundiced or have nausea and/or no appetite. You didn't mention these.

I will continue prayerful vigilence for your Keith and for you, Carleen.

Keep the faith!

love,

Cindi o'h

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Carleen and Keith,

Will keep you both in my prayers

for relief from pain, and a new

plan in treatments soon.

Like Cindi wrote, tha liver may

be under attack but the biggest

signs for it are not there, so

hope is still there.

xo

Jackie

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Carleen and Keith.

I am going to try again to ask my mom and dad to help. They are my angels and when I needed my sisters cancer to be taken care of, they somehow did it.

It was probably my mom, she can be real loud and very persistant when she wants to, and God himself, as great as he is, will probably get sick of her following him around all day yapping in his ear and just to get he to shut her peep hole, maybe he will grant this miracle.

I will ask both of them for a miracle today.

shelly

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