An update.....

[billybags]

Kitty Cat, Just do one day at a time. You are in our prayers. Be brave for him.

[rsudock]

i'm thinking of you...

xo,
R

[Kitty Cat]

Thank you all for the good thoughts, I appreciate them more than you will ever know.

For the recent updates:

He started chemo this past week. He did okay, it's very mild and also not as long as most people have to be there. They start out taking blood to check on the cells. I'm very surprised how quickly they get the results from that-it takes no more than 10 min! The second step is an anti-nausea IV which takes about 15 min. The last is the actual chemo. This is around 30 min. The facility is really awesome, the nurse he has is wonderful. While she was explaining the whys and whatfors, I lost it and started crying. It really hit me that this was it and everything depends on whether the tumors can be slowed down or not. I pulled myself together and threw myself into the books they gave us. He did very well, had an appetite that I haven't seen in a long while, but now he's so tired and sore, he spends an awful lot of time on the couch. Simple things that gave him pleasure are now too much.

Our daughter and I took him to the beach this week too, this will be the last trip he will be able to go. He was so cold, he was huddled under a sweatshirt and towels. I felt really bad, we kept offering to go home, he refused  and he did have a good time. He gets sore sitting in the car too long, we had his pain pills with us to try and help, his walking is really bad now. He's finally going to start using his wheelchair.

The only plus to the dialysis side of all this is because of the chemo, he no longer has to take cumadin. The chemo thins out the blood enough to prevent clotting. He can't use heparin because he is deathly allergic to it. He will stop breathing. It's happened twice, once when they found out he was allergic and the 2nd time in the hospital when the nurse ignored the huge sign over his bed saying "no heparin"! I happened to ask if she was using heparin and she calmly asked what would happen, I told her and all of a sudden there were more people in that room than I thought I would ever see.

To try and keep his spirits up, I bought him a few John Wayne movies, he loves them. So far he hasn't watched them, but I try. Here it's after 2am now, I can't sleep-nothing unusual about that, but I can feel how short time is. He's only 52, everything about this is wrong. How is it that somebody can try to do the right thing, yet you will have somebody who doesn't care, hurts people intentionally and they live unscathed till their 100? He suffers and there isn't a single thing I can do to help him. I checked on him before I came online and he was moaning in his sleep. I asked if he was in pain, when I flipped the light on, I can see it all over him. He said he hurt too. He's still hours away from the next pain meds.

I'm trying so hard to stay positive, move forward and have no regrets, just enjoy the time left. Most days I'm good at this. Sunday, I wanted to crawl into a hole and not come out. I know I can't do that. I keep throwing myself into things to avoid thinking. I'm afraid if I admit everything going on, I'll start screaming and not stop. I can't do that to him, he doesn't deserve it. I can melt down afterward, but the same thing. I'm going to throw myself into school and finding a new job to do to get me through school, but I also know that at some point, there is going to be a gap in time, I'm afraid of how I'm going to react once that time comes.

I thank you all for listening, this helps me. I have no idea what I'm doing, I'm running on instinct to try to protect him and care for him. I've done this for so long, I'd been told twice this past week that I'm not going to know what to do with myself once this is over because I've never had time for myself. I really don't mind that. This is what I do. How am I supposed to move on without my husband? I can't even fathom doing anything alone...

Thanks for listening...

[MooseMom]

I don't know how I missed this thread...

There really are no words for what you are going through that could take away such intense sadness and pain.  There is nothing more horrible than watching someone you love suffer so much, and I am so very sorry that this is happening to you.  No wonder you are in such pain. 

I've just finished reading this whole thread and noticed you had mentioned hospice.  Is this something you might still consider?  I had a friend whose mother was very ill, and she was able to get her mom into a hospice.  I can only go by what she said; she said that hospice was wonderful because those people are professionals, and reducing pain and creating comfort is what they are trained to do.  They take care of all the little, practical chores while you can do the really important work, which is providing emotional and psychological care to your husband. 

The future for you is full of unknowns, and that's what makes it scary.  There is no need to worry about what you will do with yourself; those answers will come in time.  But you are right in believing that now is what matters, and the important thing is that you have no regrets.  Give your husband all you can give, just like you are doing now, and later you will be so glad that you did everything you could to make his days easier.

I could be trite and tell you that with us by your side, you won't be alone, but we can't possibly fill such a void.  But, we can try.  In the meantime, thank you for the updates, and please keep us up to date with how you are doing. 

[okarol]

Thanks for checking in. I wish it didn't have to be so hard. Sending you big warm hugs and hoping you can get some rest.
As far as your hubby, he might be able to take benadryl and melatonine, if the doctor says its ok. That, along with his pain pills, may help him to sleep better.
Hopefully you'll be able to take this one day at a time and try not to wonder too much about the whys and hows of the future. It will wait. I think its good that you include him in as much as he wants to do.
Best wishes that his chemo is not too tough and it helps.
 

[Kitty Cat]

I'm having such a difficult time tonight, I think him hurting as bad as he is to cause him moaning in his sleep is what knocked me off my path.

MooseMom, I will have hospice in, but here (I don't know if it's everywhere) they can't do anything with him while he is on chemo. The second he comes off chemo, they will step in immediately.

I've been doing some wandering around the web reading about liver cancer tonight, the one thing people are sharing is that when the body starts to shut down from liver cancer, the person becomes very tired, lethargic. This is what I see him doing now. I suspected from the onset that it may not be the 4 months that they estimated but shorter because of how fast the tumors were growing. I know the doctors can't possibly know and it was only an estimate, so I tried very hard not to cling to a time line. I have no idea how I'm going to get through this. Tonight has been the worst so far, I feel really beat up and haven't been able to stop crying. But at least it's not in front of him, hopefully I can pull it together in a few hours as I need to get him to dialysis.

I'm going to try to get some rest, thank you all again, I know I keep saying it, but you all are truly helping me through this. I wish to God that this wasn't my reality.

[Kitty Cat]

Just checked on him, he seems to be a little bit more peaceful, maybe a deeper sleep?

okarol, he'd been taking benedryl because his skin itches, don't know if his phophorus is up or if it's the chemo making him itch, so he called his doc today and they've got him on something stronger to stop the itching. That, thankfully has worked. When we go to chemo next, I'll make sure we mention the itching.

I am going to work on my Mickey Mouse cross stitch for our grandson, there's no way I'm going back to sleep.

[okarol]

 

[looneytunes]

KC, my heart goes out to you.  This is such a difficult time for you and for him.  My thoughts and prayers are with you daily.  The time you spend with him now can be your comfort later.  Try to take a little respite for yourself each day, even if it is to allow yourself a meltdown.  Those can be therapeutic, too.  I'm sending you my biggest cyber-hug today.   

[lmunchkin]

May the Lord be with you and your family during this time!  I know this is hard on you and hang in there KC!  You come to us anytime!!!!

Sending hugs      and prayers       to you!
lmunchkin     

[boswife]

This is so hard and im terrably sorry it's your turn at this horrable reality.  I wish so badly that comfort find you and give you some peace. I pray for peace and comfort.  I dread this reality    Im so sorry and wish i had words of comfort...   

[Kitty Cat]

He's been admitted to the hospital. He has jaundice, his blood levels are off by almost 10 points, they are checking for a possible liver infection and if it turns out that the livers bile duct is blocked, they are going to try and reopen it.

I feel horrible that I somehow didn't see him getting jaundiced until this morning, but we already had an appt to see the oncologist today after chemo. His numbers are so far off along with everything else, he was rushed in to see the doc and chemo never happened today. I'm hoping we'll get some answers today or tomorrow and if need be, get hospice involved.

I don't know what to do and I feel like I'm losing hope. This is a horrible for any human to have to go through.....

[okarol]

Sending you a hug, many hugs. 
I hope you have support there. This is very tough.
I've been thinking of you since yesterday. Take care, keep coming back here, we care.

[MooseMom]

My personal belief is that there comes a point where the suffering must stop.  I don't know just when one arrives at that point; it is different for everyone.  Your husband has fought for so very long; does he want to continue fighting?

I don't know why so many people are made to suffer like this.  It is such a cruel thing.

You say you don't know what to do.  My gut instinct is to tell you to do whatever is necessary to make sure your husband is comfortable.  Think long and hard about every intervention the medical team wants to perform.  Doctors sometimes don't know when to let go, when to stop, because their training compels them to DO something, anything!  But that's not always the right thing for the patient.  I think you know which procedures will provide a benefit and which will simply do nothing more than inflict more pain.

What does your husband want?  Is he still in fighting mode?

[Sax-O-Trix]

 

[Desert Dancer]

 

[del]

   

[willowtreewren]

Thank you for everything. I'm sorry I'm not posting as I should, I'm trying to squeeze in so much in a short time...

OH, Kitty Cat. There is no posting as you should. Dear, you are doing what you should when you are being with your dear husband. 

If I could pour all the loving help possible through the internet, it still wouldn't be enough. Your IHD family will be here whenever you need to post, or just read. WE are the ones who should be posting to YOU!

 

Aleta

[Cordelia]

I'm so sorry to hear this  You're in my prayers/ thoughts   

[Kitty Cat]

Thank you all.....I've never seen this side of life until now, I'm so used to all the kidney stuff and this curve ball has completely knocked me out of my familiar surroundings, if you can call it that.

MooseMom, my husband is the one fighting, his doctors would stop at a moment's notice if he says the word. Our daughter is pregnant with her 2nd little boy, my husband's goal is to meet this child. She is due next month sometime (I say that as she has been told that she will have this little man way before her due date of 8-31) Her pregnancy is high risk as she has developed my husband's kidney disease.

I do everything in my power to make sure he is happy, pain free as best as I can and comfortable. As soon as he stops the chemo, or his doc says no more (he's very lucky to have the 3 doctors he has....they are the only ones I've ever met that have his interests at heart, first & foremost.) then hospice comes into the house immediately and takes over. The one constant I've had is insisting he pass at home. He has spent way too much time in the hospital in the last 11-12 yrs. His time will be at home. I will find a way to make it happen.

I'm not sure he'll be here for our 28th anniversary next month, I can pray he is, but if he is I truly hope that he is still himself. Once dialysis is stopped, he will pass very quickly. But I have been told that it will be in his sleep, I've also read about it on the internet, I know not to believe everything I read on other sites, but everybody seems to agree on this.

I'm trying so very hard not to concentrate on what happens next, I don't want it to interfere with whatever time we have left. But it never leaves my mind. I know what I feel like right now with him in the hospital-I can't imagine this feeling the rest of my life. I'm not sleeping, last night I did sleep most of the night, it was so very nice, but tonight is another of the long hauls. I'm borrowing his portable dvd player so I can sit in the bedroom and watch a movie to distract myself. I want to call him so desperately, I can't....in case he's sleeping.

He told the doc this afternoon that he wanted to wait until Monday to be admitted, the doctor was speechless, I asked why Monday, he said that he needed to make sure he was home for my birthday, that really made me cry, but I told him I didn't care about the birthday I want to make sure he's as healthy as can be. I am so touched that he even thought about it.

Thank you for the prayers, once again this site is my saving grace....I come in to read as much as I can, I am truly touched and humbled by all the hugs, prayers that you have all given us. I'm also blessed to be able to post, trying to get this all out of my head and keep myself focused. A huge thank you to everybody at IHD.

[MooseMom]

Kitty Cat, you are doing a wonderful job keeping everything together.  You know your husband's wishes and are doing everything in your power to honor them.  That's a big job, and you are perfect at it.

It's very wise of you to try not to let thoughts of the future prey on the present moments you have with your husband, but I do understand that it is impossible to always be in control of your thinking.

I hope you all get to greet that new grandbaby into the world.  What a wonderful reason to want to live!

[rsudock]

I continue to read your posts and hope you find peace and strength. Your hubby is so lucky to have someone that loves him so much. 

xo,
R

[Bajanne]

KittyCat, I have been following your journey and really  I don't know what to say.  What I can say is that my caring thoughts and prayers are with you all the way.    Thank you for allowing us to go through this with you.  Your husband is very fortunate to have such a loving wife as you are. 
One thing, I want to ask you to please take care of yourself as well. I am praying for your continued strength. 

[Deanne]

I'm sorry you, your husband, and family must endure all of this. 

[looneytunes]

KittyCat, I am thinking of you.