Sunday, October 31, 2010

FINALLY! WE'RE HOME....

I don't even remember NOT writing my blog last night! strange....
Well yesterday the nurse told us that Tonys potassium is too high and heparin levels were off. So they gave him more blood thinners and had him drink 2 bottles of some brown stuff called Kayexalate. Just a word of caution...unless you WANT to be embarrassed, live on the toilet for 2 days, and feel yukky..DON'T drink this stuff! RUN!!!! SO it was a day of me changing sheets, helping out, cleaning up, asking for medication and keeping Tony as happy as possible! (which wasn't easy) Tony's blood pressure finally got high enough that he wasn't on Neo Synephrine anymore and he could go to a regular room. BUT they didn't have any available until 8pm on the oncology floor. UGHHHHH He was tired of the tiny room and I was tired of that FREAKING CHAIR AND having to move that chair every time we went to the bathroom..the room was so small! We were sitting there chatting with the nurse..she was great! and she came and said HEY they have a room now! woot!!! I think it was about 3 or 4?? We moved upstairs into the room we were originally in Sunday! The biggest room on the floor with the awesome sunset view! We got settled in, Tony now only had a Heparin drip..that was it! yaaaay! I ordered Pizza from Adriatico's and we sat at the little table and chatted and laughed some and ate! The view from that little beat up table was awesome..it was almost like we were at a nice restaurant..in sweats and hospital gown! Tony has little blisters in his mouth so he didn't eat much. He said the sauce burned..poor guy! That pizza was great! Then we walked around the floor 3 times, it makes a big circle. OH now I know why I didn't blog..I was falling asleep doing my frontierville on Facebook at 8:30 and could NOT hold my eyes open..that's why!!! I made my bed, changed my clothes, gave Tony a long hug and he said "well we made it", he was so relieved! I had tears in my eyes....I said "yes baby WE MADE IT, THANK GOD".....I layed down and fell asleep at 9pm. That is 6 or 7 hours earlier than normal for me! I was freezing and just didn't feel well. I slept until Tony woke me up scratching..wow it sounded like no scratching I have ever heard. He did this all night long..digging into his skin..and every time I woke up he was awake and still scratching. I slept on and off for 13 hrs. NOT a restful sleep obviously but sleep. Today at 9am the Dr.s came in and said everything looked pretty good with blood work and he could go home! They said his blood levels will continue to fall some this week so be careful with germs, dust, leaves, people that don't feel well, etc. I had Tori vacuum Friday to keep the dust down. The ride home was HELL, Tony felt horrible, had horrible car sickness, he was burning up and had the A/C on the whole hour ride home. I think there was frost on my dashboard and I was freezing!!!!!!!! BUT I just wanted him to be comfortable. As soon as we got home he started dry heaving and vomiting. I think it scared Tori some, she was still here. I gave him some anti nausea meds and he wanted some soup. Our friends Rick and Jenny picked up some groceries for us and she made Tony some cream of potato soup, he asked for it, lol. He ate some and then started vomiting again. Poor guy! He finally fell asleep and slept for hours...then ate some more soup and slept some more! I was trying to do some laundry and stuff..I got one load complete and I'm just exhausted..I wish I could wiggle my nose and everything be done!I cannot move anymore...I am headed to the hot tub in a few, maybe have a glass of wine, might watch a missed greys Anatomy and sleeeeeeep! OH and our lights are on and no one came here for candy tonight! hahahha It is kinda scary back here in the dark..but I had some candy just in case! Guess I'll eat it :)
Dear Heavenly Father...
Give me the strength to show compassion and care, to ease Tony's pain & frustraion, to help him smile, help me to show him, that life is still precious...in the midst of illness and uncertainty. Help me to calm his worries and fears and remind him to laugh!
Help us both enjoy the simple things and the little moments life has to offer..
Shower us with your love and let us enjoy the peace that this week has to offer us...Always in your awesome name, Amen

Friday, October 29, 2010

Today...I could have done without!

I don't even know where to begin. Overnight neither of us got any sleep. I was checking my freaking Frontierville at 5 am and hadn't been to sleep yet. Tony was itching and scratching and tossing all over. Then the maniac nurse got here at 7am. I don't think I have ever met someone so OCD. We had finally fell asleep and she came in throwing stuff away, rearranging "our" stuff, moved around all 6 IV bags, I don't even know, she was just a crazed mad woman! Everything she did she explained and repeated twice at least..I'm tired and sleep deprived..just do your thing and leave please. Oh and she slammed the door shut every time she came in or out. I mean this is our 21st day here for the IL-2 process..and we know what to expect, what is going on, what time the freaking cafe closes, and what we have to do..
He did not get his morning IL-2 but was scheduled for his 2:30 dose. I had to tell the nurse that she needed to do checks and vitals and let the "Fellow" Dr. know by one or one thirty. She said she thought they were skipping that dose...ummmmm
Then the pharmacy that mixes the chemo was delayed so it was NOT delivered to Tony's room until 3:35. This delay is big deal because his last dose he can get this week is tonight at 10:30. They do not deviate from the every 8 hr protocol at all. SO now Tony has to recover and be able to tolerate his LAST dose for the week. They decide this by 9. No matter what time he got his last dose. Of course he can't recover in 5.5 hrs. We were both upset, his doctor was upset, everyone was upset. We had 4 visitors in our room to discuss this incident....I'm NOT finished with that. The pharmacy mgr still wants to chat. So do I. I told them EVERYONE else is looking in from the outside but this is OUR life..this is MY husband and the last dose could have saved his life! Nope..I'm not done with that!
I went downstairs and got us an early dinner because we knew he would be getting rigors and nauseous soon and he was hungry. Cafe takes an hour to deliver tray so I went myself and bought us dinner.
Yaaay the blood slinging nurse from last night was going to be our nurse tonight too but she is really awesome! The bitchy nurse came back in for something??? who knows but she was writing stuff for 20 minutes. weird!
Tony started getting cold which means rigors are coming...he ask for Demerol. It helped some but 2 hrs later he kept asking for more covers...I think I had 4 on him...I asked the nurse for warmed blankets..I piled 2 more on him and he was still cold..he started shaking AGAIN. I went and asked the nurse for more Demerol. I heard her on the phone..by the time she came back he was shaking so bad, asking if I would please help, I turned on the heat lamp, put ALL the covers on and I was crying with my hand on his chest praying to God to ease his suffering...she came and said the Dr. said to keep him warm and they can't give him more meds for 2 hrs...... UMMMMM (breathe) I thought about this for a minute with tears dripping off of my chin (breathe)and knew I had to keep my cool or I would be kicked out of ICU. Keep in mind this nurse LOVES us and thinks we are great. So I calmly..OH SO CALMLY said through my tears...and teeth.."please call him back and ask him to come watch my husband suffer with ME because NO ONE could just sit here and watch this, PLEASE" So she did just that..she brought in half a regular dose. By the time she came back, I had grabbed Tonys cross and prayed more with him. Tonys lips were blue, his hands were so tight he couldn't move them, he was so thirsty and was breathing heavy. He tensed up so bad he thinks he pulled a muscle in his shoulder. The demerol worked within 3 minutes. BUT the damage was done, I massaged his shoulder with Eucerin until it felt better, had the nurse take his temp. It was 102. NOW he keeps drinking water..tons of it. He isn't supposed to but he can't stop. He kept saying "I'm so sorry" to me...I said for what, he says he doesn't like scarring me, he doesn't like me being sad, and he kept saying "thank you so much" NOW they are giving his lasiks so he can urinate because of all of the swelling and fluid accumulating in his body. shewwwwwww WHAT A DAY! We don't have to do this again until the week of 10-7. Until then it is rest and recovery.
Dear Heavenly Father Thank you so much for easing Tonys suffering tonight and providing him with some comfort in his time of need and please let him find solace and peace in our home this week to help him recover quickly and enjoy some of his week, thank you so much in holding my tongue when I could have really caused some damage today..give me strength........Please watch over and comfort my mom, Leigh and Allen, Aunt Martha, and Uncle Bosco. I do ask this in your loving awesome name...Amen

Thursday, October 28, 2010

My husband is pretty awesome....

Tony went through all of today pretty positive and nice to me...nice goes a longggg with me! lol We had a very early start as nurses came in to give him meds throughout the night and he got his dose of IL-2 at 6:30. Then he was cold and yukky, then he wanted to eat. THAT never happens early in the morning. His blood pressure then dropped alot so he didn't get anoth dose of IL-2 until 11pm tonight. We both tried to rest as much as possible. I actually took an hour and a half nap this afternoon..I don't nap but sometimes your body just says STOP and DROP! We really had a uneventful day! which we needed! Tony is starting to feel bad right now so the nurse is pumping up with Demerol, Ativan, Ambien, and something for nausea! OMG the nurse was just taking Tony's blood for a Heparin check and the end popped off NOW there is blood everywhere. It even shot Tony in the eye. OMG. It's like a horror movie. BUT at least they are both laughing now about how he is awake and NOT one of her sedated patients! ok I gotta go help clean more...more tomorrow. OH PLEASE pray for my friend Leigh, her husband has had Kidney Cancer for 4 years and now it has spread in so many other places I can't name them all....please pray for her and Allen her husband!!! :(

Wednesday, October 27, 2010

Ummm I don't know what day it is.....

Me and Tony are trying not to feel upset right now...he hasn't had a dose of IL-2 since last night at 10:30. He will not get one until hopefully tomorrow morning at 6:30am. His blood pressure was too low and they were giving him 3 things intravenously to raise it but they were working too slow. His heart rate would speed up to 145 then drop to 45 and he was gasping for air. It has been a rough day...Tony hasn't felt horrible but he hasn't felt good at all. He was given several meds last night to relax him and help him sleep. He slept very good for quite a while. I think I slept from 1:30am til 3am and then little bits here and there. OH then we had a nurse that..I dunno liked to come into the room..every ten minutes. Took his temp, then ask the date, left, then came back to give him meds, then left, then came back and woke us up to give him Tylenol...they only give Tylenol if he gets his IL-2. This went on allllll dayyyy longggg. She did not quite understand how to set the pumps so needless to say all 5 of his IV pumps were beeping every ten minutes FOR 12 HOURS...I'm NOT kidding. She was new to the MICU unit. And a pretty new nurse anyway but when I don't have sleep and Tony doesn't feel good..I get a little bitchy! Then the dreaded blood culture she was doing, taking the blood out of his hand...it was unnecessary and caused him too much pain, he has veins in his arms..ughhh, He has a double PIK line and another IV. anyway...just venting. They were looking for a room in MICU with a shower and bathroom with a door since Tony can move around and "I" am here too. (The other one just has a curtain in front of a toilet but the room was very big.) The first room they were going to give us was leaking on the bed last night...so we waited...no big deal we had a huge room. Tonight they moved us to our "new" room. I think it used to be a closet perhaps????? OH and HERE is the kicker. The light in the bathroom doesn't work AND there is no shower curtain. ummmmmmm OK that's all I can say about that right now...we did manage to get it fixed.
I'm rambling because we both feel a little let down about him not getting his dose tonight....but we figured they know what they are doing BUT when you sit around here and watch and listen you realize alot of people THINK they know alot and maybe they know a little less than what they think. Just an opinion...
For over an hour a young woman was screaming and yelling and crying. I hate hearing and feeling someones pain so much and not being able to do anything to help...
She did not succeed with her wish to end her life and it just made me very very sad for her...Tony is fighting so hard for his life because he wants to live, his life is awesome, we are very happy...and to know someone is so sad and lonely and full of pain to try to end hers makes me think too much....I wish her life was awesome..I will pray for her. Aunt Martha is too sick to read the book I sent her, and Tony is here in the hospital again..I have a lot of praying to do tonight and some thinking...and hopefully we can sleep tonight! we will need it tomorrow for sure! I WILL be more positive tomorrow but like I said..I need sleep to do that...Keep us all in your prayers please.....

Tuesday, October 26, 2010

I THINK it's Tuesday.....

Last night Tony had his IL-2 at almost 11pm. I told the nurse he will need Demerol for his "rigors" about 2 or 3am so be prepared...well almost 3 he started getting cold and shaking..Rigors are like when you are shaking from the inside out, like you are naked in Alaska and can't get warm. One shot of Demerol and it goes away but in the meantime Tony is shaking so bad all of his muscles hurt and I gave him my covers..even my sweatshirt to get him warm..why you ask?? because I told the nurse to be prepared right??? WELL she didn't order it from pharmacy until I called. WTF is wrong with people????? I could have punch her freaking head off! Tony MADE me be nice. Then he was shaking so bad he started throwing up. I was getting more mad but I promised I'd be nice..so I said Can you PLEASE get him IV nausea meds now please..I thought that sounded nice! Tony's pressure dropped so low that they didn't give him his 6:30 dose. He has only urinated twice in 24 hours..that worries the doctors. Vascular leaking is what this is called...I know I've explained it all before. He was moved to ICU this afternoon. He did get his IL-2 dose at 2:30 today and has been feeling hot/cold/grumpy etc ever since. I don't really have a lot to say right now except I'm very tired and Tony feels like shit. oh yeah we were going to move into an ICU room with a shower...ummmm but because of all the rain..it has flooded so now we are stuck in the big room without a shower...awesome! Tony should get his last dose of the day at 10:30pm. Please keep us in your prayers....I have to try to rest...is is really only Tuesday????

Monday, October 25, 2010

Manic Monday....

I'm laying here watching Tony trying to get comfortable and listening to the talking he does when he is under the influence of IL-2. He is hot...he has a fever and is turning red. I WILL rub cream all over him tomorrow to prevent the itching that he had last time!! That freaking horrible itch that made me pray for him all night long...for 3 days! He had his first dose of HD IL-2 for this round at 2:30 pm today. By 3:30 he felt terrible and hasn't eaten anything since. We have both slept on and off all day today. The nurses come in about every half hour it seems..so if I didn't return calls or texts please don't worry I will..I have managed to turn Tony's phone off or down completely some...He doesn't like when I do that but if his phone wakes us up again, I'm throwing it away..geesh he is stubborn! He got his second dose at 10:45 and is feeling horrible right now...he says he feels like he has a terrible flu and is very restless...I hate it. I don't know what else to do for him..he vomits, I get him the bucket and a washcloth, I uncover him and cover him back up...I dunno. I hate feeling helpless...the insensitive ladies are here to take more blood with the floodlights on so I will have a better update tomorrow..we need some rest now! night night

Sunday, October 24, 2010

We're Backkkkkk! Sunday

Tony has ask me to continue with the blog so I'm typing right now looking out at the beautiful nighttime skyline view from our room, one whole wall is windows! Today we got the call to come down at 9:30am, being a seasoned IL-2 patient, we realized that all they do on Sunday is paperwork and bulls@#$ SO we waited until I made breakfast, cleaned up, send a couple thank you notes, took some Ibuprofen for my hangover, watched some football, ate lunch and finally left about 4. We are way better prepared NOW then we were for the past round of treatments! I bought a tub of Eucerin to slather on Tony to prevent dry itching (he is getting it if he wants it or NOT!) Brought some snacks so I do not starve! I know the things that need to be done and asked now to help Tony have a better experience here! I AM HERE for HIM, to make things as comfortable as possible for him..I will rest next week! Everything in my life except him can wait. Obviously we are here because his CAT scan results were good! His tumor is smaller, so the doc wants to do more treatment. Same as last time..he will be here one week, home resting one week, in hospital another week and home recovering..then scan. If it works more..he might have even more treatment after this or possible surgery to remove the tumor. We are not sure..we just have to get through THIS day, and then the next day and then the next. I tried to read some past blogs of mine..OMG I can't read that..the pain that I felt and watched..brought me to tears..I hated being reminded....
Dear Heavenly Gracious Father..please comfort and hold Tony in your loving arms and let him feel and know the love that you have for him and watch over and guide the medical staff as they start the process of treating him in the morning, please provide comfort and understanding and patience to me as I watch this battle take place, ease the pain that cancer has caused so many people..Please provide continuing comfort and peace to my Aunt Martha as her life will end before her time because of this horrible desease..And I ask for love and warmth for the Hardin family..another life lost to cancer..may you rest in peace Ed...I ask this in your name..Amen