Saturday, July 31, 2010

Friday Night and Saturday

Wow what a long night....Tonys blood pressure was 63/32 when I just checked, They keep increasing his meds but it is not helping much. He has barely woke up at all over the last 16 hrs. He just wants to sleep. They started checking his pressure more often because they were going to try to give him IL-2 at 6:30am. Well at 6 the nurse came in and said he will not be getting another treatment. He is finished with this first round. I don't think he could have handled much more and I'm positive the doctors are doing the best for Tony. He just woke up and said he is feeling a little better but is still so tired.
I know some friends and family have asked to come visit and our niece was having a hard time when I told her it wasn't a good idea right now....I'm going to explain why..Tony is slowly getting poisoned and is getting more sick while he is here, He hurts and feels terrible. The poison is doing what it is supposed to do. As long as Tony is sleeping he is NOT in pain or hurting or worrying or vomiting or shaking but is recovering from his treatments. (and I would rather see him sleeping than see him hurting)They say he is doing awesome and I believe it is because he just rests and sleeps ALOT. Even the doctors coming in for 10 minutes seem to wear him out. His pressure drops a ton just getting cleaned up. I hope everyone understands and we do know how many people love us and would love to help out in any way possible. Your prayers are being answered I hope and Tony will recover. I love Tony so much and am just doing everything..every single thing I can to get my husband healthy.
I'm hoping his pressure comes up soon and he can go back to the oncology floor today and we can both get some rest..wow ICU is LOUD! His pressure is 88/50 right now so yaaay it's coming up and maybe we can be in our own bed tom. night! Oh and Thanks Ashley, Meghan, Anthony, Rick, Toni, Russ, Shelby and Sierra for taking care of Roxy, taking care of yard and picking the garden. (Ashley thanks for going through my closet to find all my stuff!!!)It is an AWESOME feeling to not have to worry about anything except Tony!

Friday, July 30, 2010

Finally Friday IL-2 # 11, 12 & 13

Yaaay it's Friday. The maximum number of doses of IL-2 that you can get is 14 in 5 days. Tony just got his 12th dose! yaaaaay! They said most of the benefits come in the first 10 so he is way past that! We both actually got some rest last night...as much as you can expect in the hospital anyway! Tony has not had an appetite today at all, he ate some fruit, a cookie or two and a few bits of cottage cheese...that is it. His throat is very sore, I think he might have some sores there..he has some on his lips. He has been severely tired today...I haven't seen him like this in 3 years. Anyway the morning went by without too much fuss. He got his IL-2 at 7am and everything was ok, neither of us even woke up too much, we both rested. The doc's made rounds this morning and said he is doing great, better than expected with the side effects, one of the head doc's said "Tony is kicking IL-2's ass!" That made everyone laugh some! They haven't had an IL-2 patient in over a year so everyone thinks this stuff is cool (it really is like Grey's Anatomy!) Ash and Meg came to visit for a little bit and Tony woke up for a while...then he had dry heaves for bit...not sure why! He keeps getting hiccups...I know..weird! They gave him some medication for nausea and he was ok...as soon as they left he slept again....and hasn't really woke up yet. The nurses are concerned because his blood pressure won't come back up, if it doesn't he can't get his next dose. It was 70/38 just a few minutes ago and they are giving him a huge amount of meds to raise it. (they said he has an allergy to Dopamine so they can't use that anymore) poor guy!!! He wakes up and askes me to get him a cepacol losenge and then he goes back to sleep. His ears and skin is starting to peel some and is bothering him but for the most part he is just sleeping and resting. At least when he sleeps he isn't hurting or feeling like shit! (that is why he askes for no visitors) He is due for IL-2 at 10:30 but we will have to see how his pressure is. These nurses call the doc about every hour with an update on Tony's blood pressure. I've been a little teary today when I look over at him and he is looking so comfortable and so helpless..it just breaks my heart to see my strong stubborn husband looking so helpless. I just want to curl up next to him and hold him and make all of this go away....I JUST WANT ALL OF THIS TO GO AWAY! He has puckered up and asked for kisses a few times today, OMG how it breaks my heart to kiss his icy lips and feel his hot face. I haven't left this room today...I can't. He gets hot and cold and has to pee and needs a drink...I'm his "person" right now...actually I'm his "person" always...and he knows just how much when he's sick. Tony Grainger is one awesome dude...just know that!
He did manage to take a shower today, (ummmm yeah that got me all wet, he can only use one arm right now because of pic line) and wash his hair and get handsome! we will see what 10 oclock holds for him but I want..REALLY want for him to get all the treatments possible...as long as it doesn't harm him!!!
Dear Jesus, I know you are here watching over Tony and you are the reason he has been able to withstand all of this poison going into his body, I thank you for hearing everyones prayers and trust with all of my heart that you have an amazing plan for Tony, and I ask that you protect him from pain and discomfort, and Dear Jesus, DEAR DEAR Jesus please give me better understanding and loving patience during this difficult trial, because you KNOW I need all the help I can get! if this is YOUR will........Amen

ughhhhh They just came in and increased his pressure meds to an insane amount and said Doctor is NOT happy but they won't give Tony the IL-2 tonight....they might give it to him tomorrow. That would mean another day in ICU....please pray

Thursday, July 29, 2010

No No No you can't give up, Thurs. night

Tonight was pretty tough, Tony was very ill this morning, then he was ok for a few hours. He wanted some real food so I went and got us chinese. He can't taste much of anything right now but I got him some any way. I am exhaused so this is short and sweet tonight! He was terribly sick this evening. They still couldn't get his blood pressure up so they started Dopamine...well the dopamine raised his pressure some and made his heart pound so hard I could see it pounding outside of his gown and on his throat...not just a hard beat..im talking I've never seen a heart pound like that...Tony said he could feel it pumping in his skull. And then he started getting very nauseous and throwing up....I kept rubbing his face with cold wash cloths and calling for the nurse to get him some nausea meds. It went away for a while then it came back. It was almost time to get his 10th round of IL-2. After a while things got better and the nurse gave him several pain meds and an Ambien....he was hot/cold/hot/cold...I was freezing...its only about 60 degrees in here! So after a little bit he started to feel better...he got his IL-2 and the old nurse from upstairs told the new nurse what med to give Tony next time for nausea. Tony has been sleeping for a little while looking so comfortable and content. yaaaay finally! He was very antsy and uncomfortable all day, he just couldn't get situated in the right spot or something...anyway RIGHT NOW he is sleeping...itching from all the pain meds but still sleeping....and if I stay up one more minute I will be in the next room in a coma soon from lack of sleep! Tony was ready to give up today...he won't, He can't, I need him.....and I won't let him.....

Thurs. and ICU

Well right as I was finishing that last blog, the nurse came in and said he was going to ICU now, Tony's blood pressure was dropping alot and then going back up. He was feeling light headed and getting pretty sick feeling. (and very very grumpy I might add) So we moved from a suite where he had a nice view, it was quiet, calm, I had a bed, to a teeny tiny little corner of a room in ICU. LOUD and smelled like urine. I couldn't stop crying, Tony was just looking bad and feeling like shit. I knew this is going to be when he really feels the effects of the IL-2. They started giving him fluids and meds to raise his blood pressure. The doctor said it was still too low so he did NOT get his 8th does of IL-2 last night. That upset both us, if they would have put in the correct (double) pic line then he could have gotten his IL-2 AND the pressure meds. But of course someone messed up! THAT is what made me mad, Tony is here for IL-2, the less he gets of it the less it will help. That is how I feel anyway...I'm not sure. So Tony tried to sleep in this not too dark room, his blood pressure kept changing and everything kept beeping. He was not too happy. I slept in a hospital recliner, ummmm I mean I sat in one...I don't think I actually slept. They finally got his pressure to 85/60 so they went ahead and gave him his 6:30 does of IL-2. His pressure dropped pretty fast. It was actually just 48/39 when I looked up but they have to wait and see if the x-ray for the new pic is in correct position. So he is feeling very bad right now, sleeping but very very restless. I'm not sure if they will let me stay tonight but we will see. Tony wants me to so I will if I can. He just wants to sleep..not talk, TV or anything...just sleep. Im calling nurse now...his blood pressure is 71/30....that doesn't sound good to me....Dear Heavenly father please be here for me and Tony today....please..Amen

Wednesday, July 28, 2010

Wednesday and IL-2 does # 6,7 & 8

It was pretty rough last night, Tonys blood pressure kept dropping lower and lower and they were getting ready to send him to ICU...BUT they gave him some fluids and something called lasiks and it climbed back up some...they would like it to be 90/50 or higher. It was around 82/48. He took a shower and then felt very very bad all morning. He didn't eat anything, drank just a little and just slept. He was cold and getting something they call "rigors" (shaking bad). I took a shower and got prepared to go to ICU too. I have my "things" here, on the oncology floor..I'm not allowed in ICU so I got ready to go. Finally all the docs came in and said he would be staying "for now" but expect things to go downhill from here. They keep explaining what is going to happen. Hmmmmmm I'm waiting! My husband is just a bad ass....just sayin! We usually get woke up at 1 am, 2,3,4..you get the picture. I turned both of our phones down, we both really really needed to sleep. (so if u do not get an answer..thats why) We realized that 10:30 until about 1 is a GREAT time to sleep around here! When Tony woke up his puffiness had gone down and he felt alot better. Still very very worn out he said and like he has the flu BUT alot better than he felt in the morning. Ashley and Meghan got here a little after that and we just sat quietly doing our things, they did crafts, I TRIED to play frontierville all day but it wouldn't load today (help I.T.!!!!) I ordered Tony some food, he didn't want anything BUT if he eats then his blood pressure stays up some then he stays in a reg. room! so yes..I'm forcing food on him! He ate...he usually knows that I know what I'm talking about :)
it's 9pm and he is due for his 8th does in 1.5 hrs and his pressure has stayed up and he is just tired. So for now we stay here and he is sleeping with the baseball game on. I hope everyone understands how much he needs to sleep, he isn't recovering, he is slowly being poisoned and just needs his rest. I am just content for this minute to watch him sleep and know that he isn't in pain, or feeling nauseous, or hurting as long as he's sleeping. I will do whatever it takes to make him comfy and happy....and help him rest! Dear Jesus, please watch over and protect my husband and keep him as comfortable as possible while this drug does what it is meant to do, please hold him gently and provide some comfort to Tony in this time of need, help me to understand that this process is what is necessary to have my healthy husband back. I ask that you guide his doctors to do what is best and just help ease his discomforts and worries. Please please help me with patience, and understanding and grace...if this is your will...Amen

Tuesday, July 27, 2010

Tuesday and the famous IL-2

Last night was a typical night in the hospital on the 8th floor. The helicoptor wakes you up alot and so does the nurse coming in to give meds and monitor blood pressure and urine output. When I say alot...I mean ALOT! I slept on the little bed that kinda feels like rock under me but it was ok, I was here with Tony. They gave him a dose last night at 10:30 and again at 6:30 am and again at 2:30pm and we are waiting for more now. He was very VERY tired today and a little swollen and red but really not in pain right now, he is just sick. The doctors came in today about 11am...all 20 of them or so. They told him not to drink so much water because it will leak into his muscles and skin when his one kidney stops or slows functioning because of the meds. He gained about 3 lbs of water today. He walked a little bit and tried to be as happy as Tony can be when he feels like shit. Ashley and Meghan (my stepdaughters) came in from Tenn. to visit and help when needed. They are taking care of Roxy too! (THANKS)
Tony is being so well taken care of and IL-2 seems to be something very special and sacred around here, it has not been administered here for over a year, specially trained doctors and nurses are here round the clock just for Tony. It makes me feel so much better! Tony is now getting his 5th dose and is sleeping soundly right this second. His nurses are awesome, I couldn't ask for any better or better qualified! They seem to think he will be in ICU soon...his blood pressure dropped this evening to about80/40 so they had to give him IV fluids and lasiks to help him pee, it came back up for now. They said no ones ever stays up so be prepared but for now....its ok. Tony needs to rest....I need to rest...maybe tonight and tomorrow we can some! Dear Heavenly Father please watch over my husband and keep him comfortable tonight....and safe...right this minute that is all that I want...Amen

Monday, July 26, 2010

IL-2 1st and 2nd dose

The docs were supposed to start IL-2 at 2ish today, after about 20 trips in here for tests and drugs and shots etc they finally started it about 3pm. Tony felt fine, he was hungry, His sister and Her husband came by for a while. As she was hugging him bye he looked at me....I could tell right then he was feeling the effects already..the look in his eyes. As they were walking out he told me he felt like shit. He started shaking, said he was freezing and wanted another cover. His blood pressure will be the reason he goes into intensive care tom. or Wed. It is already down to 90/50 and he has a fever. I walked back in from getting some water and he said "will you stay with me?" I said "of course..that's what I'm here for baby". I was planning on going home for Roxy but now Ashley and Meghan ate here (Tony's girls) so I can stay and they can let Roxy out and bring me my meds and clothes! THANKS! I finally made it downstairs to get some food and some air...by the time I came back Tony just felt worse..wow this stuff is going to kick his ass and I hope cancers ass! We started a movie "The Proposal" earlier and finally finished after dinner...we both laughed and forget about all this stuff for a few! They came back in about 20 more times to prepare him for his second round of IL-2, they gave him so many meds today ughhh. They started it about 10:30. Right this second his IV beeper KEEPS going off and Tony just wants to sleep....WTH???? I can tell this is going to be harder than I expected...and that means it's pretty freaking hard. I'm scared and I HATE when I can't help...and I can't. Not with his pain or his cancer..BUT I can be here for him and I can move his pillow every ten minutes when he asks or cover him again or push the call button, or get his urinal or just hug..we've needed several today! Dear Heavenly Father please wrap your loving arms around Tony and heal him of this poison and help him be strong during this time of suffering, please watch over and guide the doctors to make the right decisions for him and please Dear God please give me strength...if this is your will. Amen

Monday and IL-2

Tony didn't sleep very well last night..of course they come to draw blood at 3 am and take vitals at 6 am. So he is sleeping now..WELL he WAS...they just came in to get his weight again. They started his PIC line this morning and he ate his breakfast. They will start the infusion about 2 or 2:30 today. One of the doctors on his team just visited to explain some info about IL-2 and have Tony sign some papers. The doctor explained that IL-2 will be given every 8 hrs, and Tony will start feeling tired and dizzy and just not good. His body will start to react after 2 or 3 infusions. His blood pressure will drop, his kidney function and liver function will start to fail some but they will monitor closely! He has his own care team and his nurse is just for him...no one else. When he needs something they should respond asap!
The doctor said his fluids will start to leak into his muscles and skin and he will swell. When that happens they give him meds (lasics?) to help him pee. His blood pressure will drop and when that happens they will move him to ICU. His team will follow him there and stay with him the whole time..even his nurse. Yaaay he is sleeping now! poor guy...phone is ringing and beeping. Anyone that really knows us knows that I have a problem with how he NEVER turns his phone down..not even a little! He might after trying to sleep over the next couple of days!!!lol
The doctor said that every single patient responds to IL-2 differently. he said of the thousands of people that have have IL-2 that about 10% of patients are cured. I cry whenever I hear that BUT 10 is better than 1 right? He is young and he is healthy and he really REALLY loves his life and our life together so I'm thinking everything will be ok! I'm NOT the kind of person that likes to get let down, I don't like to get my bubble busted at all so I'm just taking one day at a time and showing my husband how much I love him today and how much I am here for him...I'm NOT thinking about tom., or next week or next year..but today. Today I'm ok and am so thankful for my life with Tony...we have shared so much and been through sooooooo much together!
yaaay he is snoring now! awesome! I'm writing these because Tony asked me to and to keep our kids, family and super great friends involved.
A little Teri and Tony history here: I met Tony and he drank, he smoked and he lived hard...i asked him out (i thought he didn't drink anymore), a super long story later...i told him he had to stop drinking or find another woman..He KNEW I wasn't kidding, I'm a strong woman and not afraid to be alone! Do you know what happened then??? he drank the rest of the evening..aLOT but to my surprise..he checked himself into rehab the next day. He hasn't drank since and that was 11 years ago. He said he didn't want to lose me and would do everything he needed to make sure that didn't happen. I've never smoked..I'm allergic..he stopped smoking right before we got married..he knew I hated it. He used smokeless tobacco. When he found out he had cancer 3 yrs ago he stopped that too.. how awesome is that? Tony is strong and awesome...I just thought everyone should know how much.....

Sunday, July 25, 2010

Me Tony and Cancer 7-25

Well I woke up this morning and had a call from hospital. They said they had a bed ready and Tony could come anytime today...but that 3 or 4 would be best. I cried. I hugged Tony...I just don't want him to hurt, I don't want to be alone, and I don't want him to have cancer. I'm going to go back 3 yrs for a minute and explain how this started. Here goes, Tony was having back pain and tired legs. He had high fevers that would come and go for no reason..very occasionaly. One day he was curled up with the worst headache he ever had....I thought he looked sick, I kept asking, kept making sure he was eating right and drinking fluids, He looked like he had a bad bad case of the flu, dark eye circles, thin..he just looked sick. I told a friend of mine that he looked like he was dying. THAT same day Tony called me..he couldnt walk to his dept at work his legs hurt so bad. I went and got him. He showed me his swollen leg..i knew he had blood clots. I threatened him and forced him to go to the hospital. They knew he had blood clots and admitted him. They also said he was anemic...but they didn't know why. I made them start an IV of fluids just because he was looking SO sick at this point. The next day they came in and did an ultrsound on his leg...i could see the blood was NOT pumping in the veins. His leg was now so big he couldnt hardly walk. They then did a CAT scan. The doctor came in a little later and asked me to come with him...I followed him into a small room and was thinking they were going to have to amputate his leg or something. Then he said "I'm very sorry but your husband has cancer and this is very very serious" (breathe) Then we had to go tell Tony..he was eating his lunch looking as happy as can be....HOW DO YOU TELL HIM??? AND I WAS ALL ALONE...THAT was one of the hardest things i've ever done...just sit there and watch his face.........
They transported him to U.C. and had to wait about a week to do the radical nephectony because they had to get his blood right. He woke up from surgery and kept asking for me to unplug his machines..he didn't want to live. It broke my heart. He then got a wound infection, they cut his staples off and hooked him to a wound vac. I spent the entire time at the hospital...when a patient NEEDS to go to bathroom because of all the meds, or they a drink or a blanket or ANYTHING..its the spouse or caretacker that does it...ALL...not the hospital staff. We were both worn out! We went home, I had to clean and pack his incision for weeks. and put those damn hose on his legs (ughhhhhh) and give his his injections (we both hated that!) after a few weeks...he developed MRSA in his belly. Another trip to UC for a week. and guess what..more packing and cleaning this big whole in his belly....
This was during Tori's graduation party time and we still had kids in school. Needless to say...savings accounts...getting LOW, morale..getting low and by the time Tony was feeling better I WAS DRAINED. His cancer drained every single bit of energy out of my body...for a long time. I STILL feel the effects from it.
SO for 3 yrs Tony was NED (no evidence of disease) He wanted to move to the country and out of the neighborhood. so we did. We got a great place, a pond, 8 acres, privacy. We do what we want, when we want, and love it. Tony has a big garden, we cook, and enjoy our empty nest probably more than anyone ever has...we LOVE peace and quiet.
AS i was sitting waiting for a doctor appt on June 10..Tony called, he has had CAT scans every 3-6 months for 3 years. I haven't gona to his last few visits..because everything will be fine...he told me he has a tumor..in his left adrenal gland__________I felt like the air was just punched out of me.
Lots and lots and lots of crying. MY life is awesome and I DON'T want my husband to go through that again...ever. And I just can't...I don't have that in me anymore....all those feelings...ALL those feelings came back. I HATED that part of our life....I can never ever explain how you feel as a wife when this happens...if you haven't experienced it...you JUST don't know.
SO now as I sit here AGAIN on the oncology floor at UC I feel sad, lonely, mad, pissed off, and I really really feel without a doubt that I'm broken. I just have to be strong.....ughhhh and I'm sooo NOT! Tony is laying in his bed, snacking (as usual) and we just have to wait now. They put in PIC line early tom. and do some more test...then they start his IL-2 treatment about 2 ish. The nurses say it's very hard on him, They will probably take him to ICU this week, and I can't even use the bathroom in his room because this stuff is so toxic and it cannot get on my body at all.
Right now Tony has a great view of the moon and the clouds. He keeps having me look..today we can think about the moon....
I'm going to look at it with him....and tomorrow this will be much shorter :)