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Another fun-filled day


nyka69

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My husband has been feeling really crappy for two weeks. Had a fever week one, is still SOB, no appetite, extremely fatigued. We saw the onc Tuesday and he thought hubby had a fungal infection (he had thrush) in his lungs. Sent us home with Diflucan (anti-fungal). Hubby hasn't improved, so I've been watching him closely.

Today he came into the bedroom, and as he walked across the floor he said "my heel feels funny". So I asked him to sit down so I could take a look. When I knelt in front of him he was wiggling his toes. But then he told he wasn't doing it on purpose, it was a twitch. OK, no big deal. But then his calf started to spasm. Then his whole leg started really convulsing. I could see all the muscles jerking violently. He started to hyperventilate. He looked scared. I couldn't tell if he was breathing that way because he was panicking or if it was something else. Then he said he couldn't move his leg. I asked if I could call 911 and he said yes.

The episode lasted about 5 minutes. By the time the ambulance arrived it had stopped. So guess who refused to go the hospital?

I've been having a pretty tough time. The onc can only do so much to help us. When he asks us to go to the ER my husband won't go (he doesn't "want to die in the hospital). So the onc throws up his hands. Hubby is still getting chemo (one more left before scans) so it's not time for hospice. So what am I supposed to do when these strange things pop up? I research what I can online. I watch his symptoms. But I'm far from a doctor.

I'm just feeling at a loss for how to care for this man that I love so dearly. When I saw how terrified he was today I just had no idea what to do.

Please say a prayer for God to guide me through this. I could use it.

Thanks Family

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First of all, let me say that you are doing an amazing job. Just being able to hold your composure during that episode and try to help him with everything you had going on--you are doing great.

You can't have all the answers. You just have all the love and support. That is really your job. It is so frustrating to watch someone we love make decisions that we may not agree with. Sometimes with my mom, I think that was the only power she had over her out-of-control life. So we let her make her decisions, and supported her however we could. I cried in the shower a lot during those times.

I am really sorry that you went through such a scare. You are doing a wonderful job of being a supportive, and vital, person in his life, and he needs that.

Take care of yourself. Come here and vent/rant/cry when you need to. You lift him up, and we will lift you up. I'm heading upstairs to pray for you two now. I hope you get some peace tonight.

Kelly

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How my heart bleeds for you. I can somewhat imagine what the day-to-day caregivers go through...Trying their best to make this disease disappear from their loved ones. I DO know what it's like to be a "long-distance" caregiver, and feeling so frustrated because I couldn't be there to try and make things "better or right". You sound like a tremendous person who is trying like crazy to make things "better or right" with every ounce of your being!! Sending prayers in hopes that situations improve soon. Stay strong. Ellie

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Oh Nyka,

I hate to read this new worry with hubby. Did the paramedics have any ideas what it might be causing his leg to spasm like that? Was there pain involved?

It's awful for you, I know. Not knowing what to do next. Wanting to fix it, and hubby not letting you get help from the doctor or hospital. It just sounds like he's scared to death, and just doesn't know where to go with it.

I hope his night is going better and that you're getting some rest tonight. I know you didn't sleep Saturday night and you have to get rest so you can be strong enough to care for him.

Hopefully you will be able to call his Onc in the morning and see if he knows what those symptoms meant.

Blessings to you, my friend.

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How scary that must have been, for both of you.

I wonder if it is/was some form of Neuralgia, caused from the chemo? It was the first thing that came to mind when I read his symptoms, because they always ask Harry about numbness, pain ,tingling and shaking in his hands and feet....?

Hope you have a non-eventful day today, so you can rest.

I'll be thinking of you guys,

Nova

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I know about living on your guard. I remember my husband playing "quen es macho" - meaning, sucking it all up, not complaining. Well I told him to stop that sh**.

So, when he didn't tell his dr. or nurses things that had happened to him, I sure did. So tell his dr. Again, we aren't doctors, but it could be side effects of chemo. or something else, even perhaps seizures, so tell.

I know the difficulty you are going thru, it is hard to put on that brave face.

please take care,

Grace

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Oh nyka, this is the only thing that comes to mind. He says he doesn't want to die in a hospital. Well, maybe the answer to that one be something like this.......and you're not going to die in a hospital ~ and for sure you're not going to die any time in the very immediate future. BUT if you don't get your behind in there NOW to resolve whatever is going on then you can't be responsible for the outcome.

Now that sounds harsh after I have it typed out, but maybe just hearing the reassurance that it isn't going to happen right now and you are planning to be sure it NEVER happens the way way he truly does not want, maybe he would be more reasonable??????

Gosh, I just don't know. And my heart goes out to both of you. Thoughts and prayers are all I really have to offer.

Kasey

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(((Oh Nyka))),

I'm sorry to hear your day was filled with more fear yesterday. The only thing that comes to my mind is hydration. (Of course Tony says I'm nutso about hyrdration.) Is he drinking enough Gatorade? Cramping is common with low electrolyte/potassium levels. I don't know that you were describing cramping though. I have seen a patient come into our Oncologist's office with weird symptoms that he couldn't explain and referred her out to a neurologist. She also had lc.

The only other thing I can suggest is that you put a question up for our dear Dr. West at http://www.onctalk.com/bbPress/ He may know what is going on with hubby.

The ups and downs during a single day are enough to drive you crazy. You just want to fix the damn problems. I understand. I did like the suggestion that Kasey had re: hospitals. You know I'm in the same boat with Tony never wanting to go into the hospital again.

I'm sorry for both of you guys and hope today is better for you.

Welthy

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Thank you all for your kind works, reassurance, advice, and prayers.

Boy, did we sleep last night - about 11 HOURS! We really needed that. Hubby can't call out to me if he's in trouble (he can only speak in hoarse whisper) so I put on air horn next to him on the table. That would get me moving! That made me feel a little better about catching a few winks.

He seems ok today so far. Still no appetite and despite all the sleep last night he's been dozing on and off. We see the onc tomorrow. I'm going to ask him to do a sputum test so we know for sure what we're dealing with in this regard. Although it seems reasonable, I don't like the ASSUMPTION that it's a fungal infection. I want to know.

I've been keeping busy today making calls, during a little research, paying bills, a little cleaning. It helps me to feel like I'm at least doing something.

Thanks again to you all. Keep on keeping on!

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Wow...how scary. I thought low potassium too. My Mom is on potassium tablets. Oddly enough, the oncology team didn't catch it. Her PCP did and put her on the potassium and the oncology PA upped the dosage. It's often low with SCLC.

And ditto to what everyone else said...you are doing an great job! Unfortunately we can't hog-tie these stubborn men and make them go to the hospital. My Dad was the same way.

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I've been reading all your posts and my heart and prayers go out to you both. I can't imagine fully the gravity of what you are feeling and I am in awe of your strength with all that is weighing on you and the recent ups and downs.

I've wanted to post a reply, but my words just aren't adequate. The replies so far have been filled with wonderful advice...

I just wanted to send hugs and more prayers, and let you know that I am thinking about you both.

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Oh Nyra,

Your post just pulled at my heartstrings. How scared you must have been? I just wish he would have gone to he hospital and got it checked out as they are very thorough there.

I am just lost for words and I feel helpless that I can't help you.

I am saying prayers for him and you.

You are a wonderful wife as you are right by his side. Do you have family that can come and be with him to give you a break no matter how small? You need some down time! I worried about you. I

Let us kmow what the Onochogist says tomorrow. I really hope his next scans shows some improvement.

Hang strong!!

Maryanne

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I SO relate to your saying, "I asked if I could call 911." Let me tell you a story.

Bill was only admitted to the hospital twice in his cancer journey (apart from the biopsy). The first time was three days after we found out he had brain mets. Prior to that, we felt pretty good still. He had just started lung radiation and we had hope that it would do the trick.

He had two days of feeling extra good, eating, etc. I was happy. Then he plummeted. I assumed neurological. He was sick. He was disoriented. Something was very wrong. Did I immediately dial 911? No, I paced around thinking of all the reasons why I hopefully didn't have to. When I finally realized I had to, I kept "asking" him. He kept asking me why I needed to. I finally just did it.

Long story short -- the main problem was that he needed a blood transfusion and hydration. It was a horrible night in the hospital, because he so desperately wanted to leave and didn't understand why he had to be there. BUT afterward, he couldn't remember it. He kept asking me about what had happened, how it all went down, etc. No matter how much detail I provided, he never, ever remembered it. That freaked us both out, frankly. Because he seemed lucid. People had visited, etc.

I too was terrified of him dying in the hospital because he didn't want that. I did everything to get him out quickly. I was in a complete panic.

Knowing what I know now. Hospitals are pretty keen to honor your wishes. If your hubby were to be hospitalized to figure out what's going on, they would let him go if that's what you wanted. I think you probably need to sign some paperwork to give you the authorization. Perhaps that's a conversation you should have. Also, Bill credited me for "saving his life" that time. I think that was perhaps a little dramatic. The point being, he thanked me for it in the end. Even though it was the LAST thing in the world he wanted. In the hospital he kept saying, "don't ever do this to me again." Afterward he kept saying, "thank you so much for having the strength to do that."

BIG hugs,

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Nyka,

Your husband and mine must be distantly related. Jim doesn't always want to do as the dr. ordered. He did let me call 911 the am of his pulmonary embolism when I almost lost him, but once they got him stable in the hops. he started griping I should have "let him go". He has had a few mini episodes since the major one, it is very nerve wrecking watching and waiting to see is something is going to happen again. I finally sat him down the other day and asked him point blank what he wants me to do if another "big" one hits him again. He said he wants me to let him go, I agreed to abide by his wishes but told him I won't let him suffer so I will put him on his oxy. and call the hospice nurse.

I will be praying for you to have strength to cope with his illness as I know exactly what you are going through. Don't know if you are working, I do still have to work 40 hrs/week, so that is my "break" from home. Take care of yourself. We will get through this. Barbara Lea

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