An update.....

[boswife]

Oh KittyCat, you have my best wishes and prayers as well..  It's so hard to know how to help you at this time but im so glad that you come and talk to us and get some reliefe in that.  I pray for comfort and peace with this and may God hold you both and give a peaceful passing.  Im so sorry 

[willowtreewren]

Kitty Cat,

I wish you could put all your pain and grief into a lovely package and send it to us. Right now you need to have this time with your dear husband without that sadness clouding your togetherness.

What I find a blessing is that when we share our sadness, it is somehow diminished, but when we share joys they only grow. Please continue to share your grief so that we might lighten the load in some small measure.

Try to imagine all the hugs from all of us reaching out to buoy you during your sad journey.

 

Aleta

[okarol]

 

[rsudock]

checking in on your friend...hope you and the hubby are in good spirits despite what you are facing. Hold, kiss, and love each other...take in each precious moment together...

xo,
R

[jbeany]

 

[Kitty Cat]

We're doing as well as can be expected...he's still in the hospital, he has 2 more surgeries to go due to his liver & the jaundice. I understand anything about kidneys...but learning about livers this late in the game is very overwhelming.

Here's something that happened Friday-it'll put a smile on your face..

I had to get my eyes checked, I've been noticing my reading glasses weren't cooperating with me any more and the squinting wasn't an option anymore, plus my doctor had been after me to get them checked because of my diabetes. The eye doc gave me a new prescription for reading glasses-no surprise there and decided to dilate my eyes because he couldn't see behind the retina to make sure there was no damage from diabetes. He enlarged my eyes (they felt like they were the Grand Canyon!!!) So I picked out my new glasses and they helped me order lenses for the current ones so that I have 2 pair as I have a bad issue with misplacing them. (I think it's subconscious) After he checked my eyes and said everything was excellent I had to drive home. I get into the car, I can see but everything has a hazy aura to it. I decided to go right home and not take any chances. I called my husband in the hospital and stayed on the phone with him for comfort. So here I am, sunglasses, my headset for the cell phone, hunched over the steering wheel and driving 30 miles an hour and no faster...I got on a roll telling him that I wish he could see me I was way out of my league here, he started laughing like I haven't heard him do in a long time. I kept at it to keep him laughing. When I got home the sun came out...now sunglasses or not, that's not very nice on dilated pupils!! I couldn't resist when I told him the sun hurt my eyes and I started imitating the witch in the Wizard of Oz.   I'm melting!!!! Oh my gosh I'm truly melting!!!  I was so happy that I had him laughing like that! It was awesome and I'm going to hold on to that forever!!

He's been telling the nurses about it, thankfully they know me so they won't be scratching their heads wondering what he's living with!!   

I can't wait till he's home but because of the liver, it's causing problems with his blood levels and such so they hesitate to do the operations so that as of today, they've taken him to OR 6 times, twice doing surgery and the other 4 deciding once he's down there that they won't do surgery  It's enough to make you crazy not having any idea what's going on. They won't even give us straight answers. They aren't his normal usual doctors so this is a bit odd for us.

Have a great day, hopefully this gave you a smile!

[lmunchkin]

That is so funny!!!! You keep that up!  Im sure your heart melted when he laughed!  Thinking of you and sending     to too!  Thanks for the update and continue to do so, please!

lmunchkin

[Kitty Cat]

I brought my husband home today!!!!!! 

In front of the hospital, they have valet parking which wrapped around for a good tenth of a mile because nobody wanted to use the parking garage. The hospital tech helping him into the car, had about 2 inches between the wheelchair and this woman's car. (traffic was backed up like nothing I've ever seen before.)

My husband is having a very hard time getting out of the wheelchair, the woman going to valet says to the tech, "can i drive now" keep in mind that traffic was NOT moving, don't know where she thought she was going. The tech asked her to please wait. She decided that was not convenient for her, starts to pull up as my husband fell back again into the wheelchair. I looked at her and yelled "Would ya please wait while my husband gets into the car???" I was furious, but polite. Her mouth fell open and she looked like I slapped her. BUT, she didn't move again until he got into the car. In the meantime, the traffic still had not moved at all...

What is wrong with people??? He has a cane, very unsteady on his feet and you decide you need to move now? Where on God's green earth do you think you are going?? It has gotten to the point where people don't care about people and their needs are the only thing that counts.

The bottom line is, I'm relieved he's home, he looks much better, it's time to get a number of Dr. appts set up again. I never, ever thought I'd say that I was excited for that, but that's our normal for now and I will very happily take it!

[willowtreewren]

I'm so glad you have your husband where he needs to be. 

Aleta

[lmunchkin]

Ok, KC, I bet you are so glad to be home!  Hospitals can be so exhausting and I know you have been through a lot yourself!  Yea people are really impatient at the most inconvient time it seems!  Just keep up with the good spirits and make him laugh!  It is hard for the both of you!

Glad you are Home! There is no place like it!!!
lmunchkin     

[looneytunes]

KC, I'm with you on the Doc appointments!   

So glad you were able to bring him home and now you two can have some quality time together.  Be sure take care of yourself so you can be strong and take care of him. 

You'll be in my prayers.   

[Kitty Cat]

I apologize for taking so long to update, things have been unbelievably busy.

My hubby tried the chemo, it made him so sick all he could do was sit huddled on the couch. We found if he drank Power Drinks, he didn't dehydrate and get so nauseous or vomit. But it still left him with no energy. We had a talk about 3 weeks ago now about quality of life and he has stopped chemo. He's asked for hospice.

His oncologist has found the right pain relief for him so that he's feeling a bit stronger. His appetite has tanked and it's shocking how much weight he's lost but he wants to go for rides, so I can take him out. He enjoys his "out" time.

I've also learned some self sufficient things, for instance, I was helping with the mowing, put my foot on the pedal thing on the left, and took it out of gear for parking. Well, the second I took my foot off the pedal thing, it starts rolling down the hill!! My husband told me to push it back in, he forgot to show me where the emergency brake was!! Totally scared me!! You know I'll get it eventually...

We are still making the best out of the situation, we are sort of at peace with what is happening, but we're here till the road ends.....

[monrein]

Your attitude towards "life", including the fact that it actually doesn't last forever, is inspirational and comforting to me.  I love that you find a way to laugh despite everything and that you don't feel like you can't do new things.  I send you a big cyber 

[Kitty Cat]

Monrein,

Thank you for the compliment. My life goal especially since my husband became sick with the dialysis issues is to move forward without regrets.(12 yrs now)  I never want to look back and say "I wish I did this or that". It's taken a lot to learn to live in the here and now, at times it's very hard-like now with the cancer. I wish I could freeze time but because I can't, I want the best memories to look back on...

I did get my huge one wish, my love was here to celebrate our 28th wedding anniversary last Friday. We went out to dinner and it was just so awesome...I couldn't have asked for better. It was bittersweet knowing that there won't be any more but I had him here for this one...

I worry how I"ll do once he's gone, but I am looking to be in counseling once it's over. I have been with him for more than half of my life, that's a huge chunk. I need to move forward-I am still set up with the college to start school (now) in Feb 2012. All I can do is take it one day at a time.

[willowtreewren]

Kitty Kat. Being in the here and now is the best way! I know it is hard for you, but cherish each moment. Being able to live without regrets is a live worth living.

 

Aleta

[The Noob]

Sister, you humble me. Your Grit is Amazing.

My sister in Miami has a son, her last child, who is 11. When he was a fat happy giggly little 8 yr old, he began to have seizures. many appts and no one knew what to do. It was very late in the game when he was finally diagnosed. "x.ALD". Very serious white matter brain disease. His only hope was a sibling transplant, and that was 1 in a million. His older brother was tested and found to be a perfect match. This young man had just finished Marine boot camp. He was flown by the military to Minn. Childrens and a bone marrow tx was done.
It was successful. If you can call it that. The little boy went through a year of regression from this child into a vegetable with no sight or hearing. He had undergone chemo as well. His whole body twisted inward. He had 16 IV bags hanging 24/7 and a feeding tube. My sister has had no help through this advanced medical care at home except for her 16 yr old son. It is now almost 3 years post transplant. Jack has regained some sight, alot of hearing, can speak a few words and stand with a stander. The docs gave him up for dead and told her to institutionalize him or let him die. He is a miracle.

When I read your story, I think of her and my little nephew. And I count the blessings we have. And I am always amazed and deeply humbled how you all manage this situation. I feel inspired and have to remind DH that "it can always be worse".

I wish there was something I could do for you, but all I can offer is a hug. My hat is off to you Dear Lady.
 

[Kitty Cat]

Thank you from the bottom of my heart for the compliments.

I've always looked at us as lucky as it could always be worst (as you've said), for instance if he died from the kidney disease, it would be so painful as it's been eating away at him from the inside out, he has lost both kidneys plus the transplanted one, the kidney disease he has is a genetic thing that kills organs. It's moved because of the loss of kidneys to his vision, when the sun is shining he can't see a single thing outside. It's also ruined his teeth, we checked with his neph and he confirmed this is all from the disease. The cancer, I've been told will put him in a position where he won't be able to go to dialysis at some point. At that time, people have 48 hrs to come say goodbye, if they choose not to, it's not my problem. (most specifically, his family) after the 48 hrs, the toxins will become so great that he will become confused and will just go to sleep. I have been told this by a few doctors and my research on the web confirms it. It's the gentler, more dignified way. Hospice will be helping me the whole way. My husband is going to pass at home no matter what. He has spent way too much time in the hospitals.

I don't want him to hurt, they finally, finally just got the pain meds right, he can go for hours now without being in severe pain from the cancer. I am thrilled because for that time, I have my husband back. I've learned to run with whatever is given to me.

We have a few people who are angry that we're trying to have a good time instead of sitting home waiting to die. I'm sorry for those people. I won't have anything to apologize for or regret. I will have to answer in the end for any mistakes I make. We are learning to ignore those who seem to think we're macabre or just downright stupid. These are also the people I'm planning on putting out of my life afterward because I won't do negativity any more.

I thank you for all of the support, you don't know how much I cling to it to get me through this. I feel humbled that you have complimented me so. Thank you from the bottom of my heart.

[willowtreewren]

Just so many hugs to you.

Don't let the nay-sayers get to you. Do what is best for the two of you in the time you have.

 

I so admire your grace in the face of such obstacles. 

Aleta

[looneytunes]

KC, you both are amazing people.  I also am humbled to read your posts and inspired by you to "grab" the good times while we can.  You are both in my prayers.  My biggest cyber hug is going out for you.   

[The Noob]

Sister, you are right on. i have done same with the negative ones. good for you.
the story about the woman trying to pull out when your hubby was trying to get in the car from the wheelchair..wow made me very angry. i might have taken down her license plate, waited a day, then made an anonymous call to 911 reporting some drunk driver..of course i'd be smiling. you can't fix stupid but boy i like to try sometimes.
my sister does as you do. enjoys every minute, takes him shopping, out to eat, does not hide him away. makes no excuses. she has even had family members avoid her because as they said "we don't want to feel obligated to interact with him"..or "we don't want anyone to know about him". i am gritting my teeth here.

one call i was on, it was the beloved aunt of one of the young firefighters with us, she had passed peacefully while sitting on the couch watching tv. he asked us to to wait and call it in so he could have some time with her. we all went out and stood in the hallway and gave him the time he needed. don't regret it a bit and would do it in a heartbeat again.

know that we here love and care for you and your dear husband, and all we may be able to do is hug you and pray, we are backing you 100%. you are a very strong and very perceptive woman. and just a downright truly good person through and through. 

[billybags]

You are both in my thoughts. I do not know what to say, you are one brave woman and he is one very loved man.

[del]

Thinking of you. 

[Poppylicious]

Your attitude towards "life", including the fact that it actually doesn't last forever, is inspirational and comforting to me.  I love that you find a way to laugh despite everything and that you don't feel like you can't do new things.

I completely agree with this, but I couldn't have said it quite so eloquently. 

*huggles*

[boswife]

my gosh this is one of the most enspiring threads.  for such a hard time to go through, you have brought such strength to others while 'living' this time of life yourself.  I dont know how to explain that, but i can say that i thank you for your honesty and the way your living through this.  I am soaking as much in as im able and will save for a time i wish would never come.  Thanks, and God bless you for what your doing for hubby.  You will live with peace in you when that time comes.   

[Kitty Cat]

We got power back at 3:53am this morning, thanks to Hurricane Irene. We were originally told we wouldn't get power back until next Wednesday!! Boy am I glad that wasn't the case. We did have water, one of the blessings of a community well. You learn how to take a very cold shower without feeling like you've stepped into a freezer..

Well, hubby started hospice Thursday. Yesterday, his oxygen was delivered so he can get comfortable at night to sleep. It seemed to have worked well, when the power came back on, he was sound asleep.

What I absolutely love about hospice is that everything is geared toward him. If he's in pain, let us know, we'll come out and make him comfortable, questions? No problem, 24/7 I can reach somebody. He is at peace after speaking with somebody the past 2 days. They even have social workers that will help me regarding his mother!!!! She won't be allowed to cause chaos because this is HIS time, they want us to have as much peace as possible. They want to keep him going as long as possible so we can keep going for rides, go out to dinner, etc.

They even agreed with me about people having 48 hrs to come see him one last time after his dialysis stops, it's not my problem if people don't show up and I refuse to take on that responsibility. I want nothing but peace and dignity for him. His mother creating a scene is not part of the game plan. The problem is that she is a victim/martyr. It's all about her and how she reacts. She refuses to take him to lunch because I would be with him. She refuses to come here to see him and she's been horrible to our daughter (the things she's said to my daughter) she even told our daughter, when Kelly snapped about good old granny calling her and asking her about her dad that he would call when he's ready. Granny then told her I refuse to call (30 yrs of being referred to as trash....wonder why I won't call???) but my girl told her that I'd been with my husband for 30 yrs, married 28 and how would she expect me to feel right now knowing I'm losing my husband...granny's response?? Well, your father dying is a slight problem. Slight problem? Get a clue lady! When she calls my husband all she wants to talk about is how he feels about dying. He won't talk to her because she can't have a real conversation with him. But, he is seeing how she's treated me for the 30 yrs.

But it's all good, things are going to be good going forward, I sighed with relief when they told me they would help me with his mother and keep her off of our backs. Everything I do, I clear with my husband. So there are no surprises. The difficult thing right now is the DNR. I don't know how I feel but I respect his decision.

He's gone out to breakfast with his buddy, I have so much housework to do, when you go 7 days with no power, the dust really accumulates. He's also looking to get a generator in so that if something like this happens ever again, I won't be stuck in the dark for a week. I am really touched that he thought of that.

Thank you so much for all the compliments, if we have to go through this, this is the best way to go, no regrets no "I wishes" he deserves the best and that is what I'm trying to do...