wisdom to know the difference....

It has been 2 weeks since Tony has been finished with IL-2, he is getting a little color back and getting around so much better. He is still very weak and tired. The worst part right now for him is STILL horrible itching. I have been making him take Aveeno baths and he is taking as much Hydroxyzine as he can safely! He just has horrible rashes on him. Some areas it is so bad it is burned from the inside out of his skin and itches and hurts and burns. I have been putting Eucerin calming cream, or plain Eucerin or Aquafor on him a few times a day and nothing is helping right now. He was itching so bad and in such pain from it tonight I thought he was going to wake up our Grandbaby in the next room. It doesn't look like a rash it looks like very bad burns! I looked up his itching med online and started giving him a higher dose until I can call his doctor Monday. The dose is what they give people to sedate them but shit...being sedated and a little less itchy IS better than wishing he could cut his skin off. (which is what he said tonight) I just checked on him and he is sleeping now. sheewwwww!
We had a very nice Thanksgiving, all of our children were here except my stepdaughter meg :( and our Grandson Carter is here too! It was so nice to have our kids here and have a family holiday! Great company and great food! yaaay!
Tony was feeling just very tired but he held up pretty well!
He will have CAT scans in Jan. and will not know anything about them until Jan 17. So we just wait, our life is on hold. Like every other cancer patient. On hold! Roller coaster..blahhhh!
I want to thank my dear friend Jimmy for the cute bear candy holder and ALL of the gift cards! He is just a great friend! and I love him!
Please keep my friend Mike and his wife in your prayers..his wifes cancer has returned and then returned again...she is having her leg amputated next month. Please pray for their family!
I saw a falling star tonight...I made a very great wish..let's hope it comes true! Soon.....

God grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference..AMEN

I'm ready for Tony back!!!!

I went in to cuddle with Tony last night, I couldn't sleep. I touched him so I wouldn't scare him and he was covered in sweat, through a sheet, a cover and a thin quilt. I took some stuff off the bed, gave him a new cover and helped him change. I'm assuming this is from the IL-2 and perhaps from ALL the pain medicine. I am going to have to SLOWLY wean him off of some of that if he doesn't want to feel like an addict in rehab coming down off their high!!! Very slowly!
I weighed him today, he has now lost 20 lbs over a less than 2 week period. I keep waiting for him to look better but geesh, his lips are blueish/white, so are his fingers and toes and feet. His fingers are numb. Thank goodness he sees his oncologist tom. She will NOT have any answers about his cancer tom. JUST answers about his recovery from IL-2. He will have CAT scans in 6 more weeks to find out if the IL-2 is working more or not. Right now I just want to know why he still feels so bad, looks bad, has no energy etc and if that is normal! It was beautiful out today. I walked to the barn with Tony, he stopped and rested. I got him to the pond and then he was really exhausted..so we came in. He was laying back down before I got in. Watched alot of Football today and Tony did eat a few pieces of his favorite pizza :) We are BOTH having a hard time figuring out where our year went....we found out his cancer had spread in June. Had IL-2 for a month in Aug. and again in Oct-Nov. Right now we are just NOT ready for Christmas and we both feel kind of BLAH about it! We are just tired. Just exhausted. So we shall see how it goes....I want to know when the leaves all fell off of my trees...because I missed that whole thing! I do NOT want to decorate one. Bah Humbug isn't really the correct thing to call it...we just missed half a year. IF it wouldn't have caused so much pain..it would almost feel like we just forgot about the past 5 months. I dunno..it's hard to explain. Everything and everyone kept carrying on like normal EXCEPT US. I know that is NOT the way it happened really but wow it sure feels that way! So nope...no tree, I WILL cook for Thanksgiving..JUST because I love to cook and I need some normalcy! And Most of our family will be here!! (except Meg) :(
I just wanted to give a little update. I'm exhausted and REALLY need a vacation! But I will settle for a good nights sleep! Thanks Melissa for offering to have a benefit for Tony...I will let you know! xoxoxox Thanks Rick and Jenny for visiting today and bringing Tony some more gatorade...I hate the way he looks when he's dehydrated!! And it makes his injections impossible! The needles bounce OFF of his skin! ugh
Thank you Jesus for prayers answered! I have a few special prayers of my own tonight...I just can't type them...
I love Tony so much and this is just breaking me down...bad. Breaking him down. Please let him feel better soon...please.

God grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference..AMEN

Tony was on the move today :)

Tony woke up today and first thing he said was "it wasn't a truck that hit me it was a car" and that means that he is feeling a little better. He is still amazed at how bad his joints hurt, his knees, hands and shoulders. And how bad he is itching. I have been slathering him for weeks with Eucerin (IS NOT my favorite job!) and today I noticed he was worse...it is worse because with ALL of the keeping track of medicine and helping him with everything else and him NOT being able to turn over the lotion application got forgot about it. OH I ALMOST forgot to give him his injection last night...of course that is enough to send me over the edge...i just sat there and held back tears until I was finished and could go in the other room :( because I have just been trying so hard to remember and do everything. I feel like typing this next line in all caps because I feel like yelling it....wth! DO YOU KNOW HOW FREAKING HARD IT IS TO KEEP TRACK OF MEDS???? ONE IS A 12 HR PAIN PILL, ONE IS A 4 HR PAIN PILL. (and they are spelled ALMOST the same) 1 IS A 6 HR PILL TO HELP WITH ANXIOUSNESS. 1 IS A 6-7 HR PILL FOR ITCHING. 1 INJECTION EVERY 12 HRS. TYLENOL EVERY 8 HRS. THEN HIS REGULAR DAILY PILL IN THE MORNING. AND IF HE NEEDS IT SOMETHING FOR SLEEPING. AND SOMETHING FOR NAUSEA. WHAT THE HELL????? I just thought I would get that off my chest. I do write them down along with times BUT depending on time of night..it is kind of hard. As long as Tony leaves the dispensing up to me..it is all good..he doesn't know what is for what! No worries...I got it!
He took a shower today without any help and put some comfy soft sweats on and walked to the mailbox...he needed to do this for him. It kinda like him walking up the steps at his oncologist office...he won't take the elevator. As long as he can walk up those steps or to the mailbox..he is gonna be alright!
I sure wish he would start "looking" better, I HATE the cancer face...and he has it right now, thin thin face, very dark circles under his eyes, and he looks kind of yellow/green (he looked this way 3 yrs ago after his Nephrectomy.) I OF COURSE do not tell him how bad he looks but he knows. He has lost almost 15 lbs THIS week. He has used his back scratcher so much that his back is now one big rash. I did find some Gold Bond anti-itch cream and rubbed it all over his back. (no hydrocortisone for IL-2 Patients) Awwww, I just heard him cracking up, at what I think is Jimmy Fallon...awesome...I LOVE to hear him laugh.
He hugged me today and told me again how much he thanked me for everything, he asked if I was tired of taking care of a baby yet, he said he was just like one (yeah he knows I don't like kid's, that's why he said that!) I told him he was waaaay better than a kid and I really like HIM! :)
I made my famous roast yesterday, homemade smashed potatoes and homemade gravy, green beans from our garden (frozen) and biscuits....I Just thought it was soooo cute that Tony (who hasn't been hungry in weeks) said to me this is so good, mmmmm, this is awesome, mmmmmmmm, why don't they have stuff like this in restaurants. I mean really why don't they? He kept going on and on. Of course he loves my cooking (because I'm pretty damn good at it ;) but I'm just sooo thankful he is finally eating! that's why I made one of his favs! I will make him WHATEVER he wants as long as he eats something...The Gatorade diet had me worried!!! (maybe I should try it for a few weeks myself lol) (Really!) Well while Tony is in there laughing and NOT crying out in pain (he still does some) I am going to read some of my book.....

God grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference..AMEN

Tuesday?????

Tony is usually up and getting around some on Tuesday's after his IL-2. NOT today! He was happy that he could open and close his hands this morning, because he couldn't all day yesterday. Then he got the idea that he didn't need to take any pain medicine because of course he knows more than I do...I warned him! By 3pm he was in a LOT of pain again and just sleeping or trying to get comfortable. Actually he spent ALL day in pain and trying to get comfy. He did get a shower today and then went to the couch, I helped him turn over about 10 times because he was in too much pain to move most of the time. He still had a fever (not too high)so I kept giving him Tylenol and then I gave him his pain meds...I told him NOT to argue with me about it or I was not going to help him anymore! That was it, he took his pills, I held his cup so he could drink some Gatorade and water because he still isn't eating hardly anything. He is still having a hard time holding a cup of water or the TV remote.
I've been feeling kind of down in the dumps today...it's just a very VERY lonely sad feeling to have a very sick sleeping husband for days. I just kind of feel forgotten about. Today I just feel like WOW I don't know how I keep going and doing and taking care of all by myself...I dunno..that's just how I feel today. I'm exhausted. I have had a headache that won't go away but I HAVE to keep going...there isn't any other choice. I HAVE TO. I'm not sure how much advil I can keep taking safely, but it's NOT working..ughhh. It's been raining ALL day and storming which isn't helping this feeling... The 29 days that I have sat or slept in a chair in the hospital over the past 3 months hasn't helped either...OK TOMORROW will indeed be a better day..It really HAS to be!
I sat in the living room with Tony and watched both of the "Narnia" movies, (Tony even watched some...more than I thought he would) Made myself a frozen pizza (yuk) and then I read some of my book and finished the laundry. Oh and I changed Tony's sheets because when the Tylenol gets rid of Tony's fevers, he sweats..alot. I just helped Tony back into bed and gave him his meds and I hope he gets some rest tonight. He is sleeping in one of our extra bedrooms because of this sleep disorder that he has (REM sleep behavior disorder syndrome) and it gets worse when he takes medication...I got a little tired of being hit in my sleep and kicked, so now when that gets too bad he has another bed to go to. I think I need to try to get out of here for a few minutes tom. or Thurs....just for some air. Just to take a little breather. I hope Tony will be feeling better soon....He is soooo tired of being sick, and I really need my Tony back. I really really want him back...I miss him :(
Please keep us in your prayers, if he isn't feeling better tomorrow I am calling his doctor. I don't think he should still be feeling this bad...it worries me.

O Christ Jesus,
when all is darkness
and we feel our weakness and helplessness,
give us the sense of Your presence,
Your love, and Your strength.
Help us to have perfect trust
in Your protecting love
and strengthening power,
so that nothing may frighten or worry us,
for, living close to You,
we shall see Your hand,
Your purpose, Your will through all things_Amen

I dunno, is it Monday??

Wow...I am used to Mondays after IL-2 weeks being so so and not great but NOT like today at all. Tonys joints hurt so bad right now he can't even turn over in bed by himself, or pick up a cup of water and take a drink. He has a fever and has been sleeping all day. His hand and his shoulder hurt so bad and his legs are still very swollen. I FINALLY got the stockings on his legs yesterday to help swelling, WOW that job wears me OUT. I am giving him the max amount of pain killers right now and it is barely touching his pain...Oxycontin, oxycodone, lorazapam and tylenol and he still hurts and can't turn over on his own...wth??? Rick and Jenny Baker brought over some gatorade for him, (the are just awesome friends)I was worried about him getting dehydrated with his fever and everything and I couldn't leave him. He ate a tiny bit earlier but that came back up. Every time I walk by the room I make him take a drink or I just make a special trip to make him. I have been staying on this side of the house because I am so worried he might need something..I can't do the laundry because I might not hear him if he needs me! Poor guy!
He looked in the mirror when he went to the bathroom and said "WOW I look like a walking dead man" and yep...that is pretty much how he looks today...
I got everything unpacked, everything put away, all of the mail opened, some funds transferred and calls made, and I made myself dinner. I am NOW not so overwhelmed. I didn't even take a shower today because I really didn't feel like leaving Tony where I couldn't hear him. Today really has been hell and I was trying not to cry and stay busy but SHIT...a girl can only handle so much! I don't know how much more Tony can handle either, I sure hope IL-2 isn't anywhere in the near future!!! I think THAT could push me over the edge into insanity!!!
Please keep us in your prayers...
Thanks Jeff and Theresa for the VERY generous gifts cards, it means the world to us and Rick and Jenny Riggs (my children's dad/ex husband and his wife) for the VERY VERY generous check today and the amazing get well card. Jenny wrote the sweetest message and I cried for hours. Good good people with very big hearts!! It is times like this when you really realize how awesome God is and how amazing people can be! Thank you everyone that has helped us in some way...even in prayer.
I hear Tony snoring right now...yaaay that means he is NOT in pain and maybe I can rest...

O Christ Jesus,
when all is darkness
and we feel our weakness and helplessness,
give us the sense of Your presence,
Your love, and Your strength.
Help us to have perfect trust
in Your protecting love
and strengthening power,
so that nothing may frighten or worry us,
for, living close to You,
we shall see Your hand,
Your purpose, Your will through all things_Amen

It's Sunday!! Thank God...going home later

I didn't blog yesterday...mainly because I was so overwhelmed, so exhausted and so sad that I just couldn't. Yesterday was NOT a great day, Tony was very grumpy, the nurse overnight sucked! She was just a lazy sorry human being. Tony was in so much pain and she would bring him him meds 45 min. later..grrrr.. Enough about that. We both slept a total of maybe 1 or 2 hrs Friday night, so needless to say Sat was horrible. I cried alot, Tony cried some and we were just so ready to be finished with IL-2 and this freaking hospital. We both need some much needed rest. Yesterday we moved to the oncology floor, I helped Tony take a shower and get changed then I changed his bed, I immediatly made my bed, changed my clothes and fell asleep. Tony was under the influence of TONS of pain killers so he was asleep too. We ate a little bit and slept some more. We hugged each other and cried and slept some more. TV was off at 8:30. Tony started itching very bad so I massaged Eucerin cream all over him and rubbed aquaphor on his shin, I had the nurse bandage it. The ICU unit left his blood pressure cuff on too long and it was NASTY and burned his skin. I HOPE it doesn't get infected. NO ONE can understand the traumatic experience this is...I didn't know, I would have never believed. This is hell. That is all I can say. It is HELL for Tony, on his body, on his mind, on his skin, it is Hell for me, on my mind, on my strength, on my faith, on our bank account, on Roxy, on our kids... on EVERYTHING...and I never want to go through this again. So I'm going to cry some more and try to rest. Thank you Jesus that this is over for now.....

My husband is kicking cancers ass, 32 doses of IL-2

I am really toooo tired for blogging so this will be quick. Tony had his 32nd dose of HD IL-2 today. He is finished. Today was horrible for him, (see yesterdays blog, it was like that! only not quite as bad) They don't "think" that he should do anymore but we are not sure. We really like to live one day at a time right now so I really don't want to ask TONS of questions, just the right amount I think. His tumor shrank after the first 2 weeks, now with 2 more weeks complete we hope it shrank some more, if it did that is awesome, if it didn't we will do what needs to be done. He will have to have surgery to remove the adrenal gland tumor soon. We do not have dates or anything yet, I take him to see his oncologist the week of Thanksgiving, then he will have another scan in 6-8 weeks, so we shall see. IL-2 continues to work up to 12 months IF it is working...and it did last time...we shall see and we shall pray. Tony is still so drugged I can barely understand his sluggish words, but I'm trying! It is getting better. He blood pressure is getting closer to normal so they are using less Neo. He did eat dinner tonight, just a little..his mouth and tongue are very sore from the IL-2. It causes blisters and peeling and itching and all that bad stuff. We are still in the MICU tonight but hopefully he gets moved to a regular room tomorrow. They need to make sure EVERYTHING is safe to send him home which probably won't be until Sunday..we can hope. I NEED MY BED! I'm falling asleep and I hope this even makes sense..goodnight all and Thank you Jesus

One of the worst days of my life....

Below is a definition of Synovitis, which is probably the cause of all of Tonys pain today, He was in excruciating pain, worse than yesterday, worse than ever. They gave him Demerol (ALOT of Demerol), Oxycodone, Flexeril, Tylenol, Ativan, and some IV Benadryl. Everything they could to reduce his pain. They even got him a water flow heating pad for his shoulders. THEY COULD NOT GIVE HIM ANYTHING STRONGER BECAUSE THEY NEEDED HIS HEART TO CONTINUE BEATING AND HIS KIDNEY TO KEEP WORKING!! Then his hand started hurting and burning and tingling. I know this is NOT funny but he kept lifting his hand up and was just staring at it, turning it over and over...like he was on acid or something. He was so drugged I couldn't understand what he was trying to say for almost 12 hrs. Then his elbow started hurting, then the backs of his knees. It just wouldn't stop. I told him I needed a coffee and he begged me not to leave him...I went and got one in the ICU waiting room for one of the minutes that he was sleeping. He couldn't turn over, or even move. Everything he tried to do brought tears to his eyes and even more tears to mine. This is all from his 6:30am dose of IL-2. This was the norm for the day until almost 7pm. I finally snuck a nap in from 3:30-4:30 (thank you Jesus) I just sat back in my chair and slept...yeah I don't do that...ever.
We decided Tony should NOT have anymore IL-2 tonight...don't even ask the doctor. Neither of us can do this again right now, not tonight!!! Tom. he might get one more dose and that will be all. He will be finished! The synovitis gets worse with every dose...I will try to rest tonight...Tony is sleeping now. I have cried all that I can today...God give me and Tony strength to endure Tomorrow...please.
I have got to sleep...my mind is currently trying to erase the hell that we have been through today and I really do not want to ever re-live it...ever, please don't ask me to.
(All of the ill effects from IL-2 SHOULD be reversible once IL-2 is out of system. it can continue working in his body for a year.) PLEASE PRAY FOR US FRIDAY


Synovitis is a condition that develops when a joint lining (synovial lining) becomes irritated and inflamed. Each joint is enclosed in a capsule lined with membrane tissue known as the synovium or synovial membrane. The synovium secretes a lubricating fluid (synovial fluid) and is able to adapt to different motions of a joint by expanding and contracting. When the synovium becomes irritated, it increases fluid production, resulting in warmth, tenderness, and swelling in and around the joint.

Uric acid overproduction, as seen in gout, places individuals at an increased risk for synovitis. People at risk of uric acid overproduction include those with a history of leukemia, lymphoma, psoriasis, and those receiving chemotherapy. Alcohol consumption, chronic renal failure, and hypertension can lead to a decreased excretion of uric acid, which in turn can lead to uric acid accumulation and an increased risk of gout and associated synovitis.

4 more days until HOME!!!!!!!!

Last night was longgggggg, I really don't remember alot of what happened today. My mind tends to forget what is painful for me and today was. Tony had his dose of IL-2 at 7:00am today and very quickly started feeling bad. The doctors made their rounds while Tony was having rigors, laying under a heat lamp, couldn't talk and was in tons of pain. They said more Demerol could be used and Benadryl which helps. After they left Tony got worse....he was in so much pain..I have never seen him like that before. Maybe after his Neprectomy (kidney removal) but I'm not sure. Because of the rigors from last week that hurt his shoulders and the ones from yesterday that lasted FOREVER, his muscles were very sore, his back that has been bad on/off for 3 yrs was hurting so bad today from shaking and getting tense that he was actually turning blue holding his breath because it hurt him so much to breathe. His heart rate went up to around 170. They gave him so much painkillers that I couldn't even understand him when he tried to talk. No matter what he did, what I did, what the nurses did, he was still in unbearable pain. I put my chair next to his bed and just touched him and prayed and prayed and cried. He said his arms hurt so bad that they should just cut them off, he was begging for help. He couldn't even hold his cup to take a drink they hurt so bad. He could not turn over in bed, he couldn't do anything...not even just lay there. He was miserable...I was miserable. Jessica, our fav nurse came down to visit and said she would make him some hot pads, so she went and made him some and brought them back. I had been doing range of motion exercises with his arms and shoulders all day (so much that I am sore)and mobilization of his shoulders. Which finally started to help. Then I put the heat pads on his shoulders for about an hour, THEN I stretched both arms alot. Then heat pads again. Tony now thinks I'm an angel....he can now turn over in bed and eat his soup. He could not do ANYTHING before. I think he has said "thank you baby" or "thank you so much" about as many times as I have fixed his blankets today. So yaaaaay...Tony feels better! He MIGHT get another dose at 10:30..if they do then tomorrow the blog will be just like this one! (blah, i hope not) They have now prescribed him a muscle relaxer too. So maybe we will at least be better prepared for this pain tonight. I could really SERIOUSLY go on and on about the hell of today but I really don't want to think anymore...I just can't. On a good note, I showered, dried my hair, put on a little makeup, went downstairs and bought some Lo Mein for dinner...Tony ate some too. I got out of this room for a few. I changed his bed, changed his clothes, got him up and in a chair for a few, brought him some Diet Dew and now we are resting and waiting until the next dose of "hell in a bag". Our lives will be normal very soon...Thank you Jesus for answering so many prayers today...Tony has found peace and comfort tonight and I am one unbelievable strong woman, thank you for that...Thank you soooo much...Amen

Once again...I have no idea what day it is

Tony's dose last night went off as planned, we were watching the Bengals lose again and I was nodding off. Everything was fine until about 12:30 OR 1:00 I think, then he started with Rigors, they gave him Demerol, and it worked for a couple hrs. Then more rigors, they gave him more Demerol, then even more. We are guessing that the more IL-2 he gets the more often he gets Rigors. Then we slept on/off until his 6:30 dose was getting ready. They had to give him lots of fluids to keep his pressure up at this point. Rich, the nurse, will always do what he can to make sure Tony stays on the 8th floor AND gets his IL-2. He got off at 7 and we had a new nurse...it's shocking to me how many nurses are SCARED TO DEATH of IL-2 and it's side effects. She took his blood pressure once and said he was going to MICU. Then he started getting Rigors, and she gave him Demerol THEN wanted to do an EKG to make sure he was stable....ummmm he was freezing, shaking off the bed, I even had the heat lamp turned on for him and his eyes covered and she uncovered him to put EKG leads on...UMMMMMM I told her she could have waited 3 minutes until the meds kicked in and he got warm. I stood there with my hands on my hips giving that bitch Teri look that everyone has seen. I covered him back up before she was even finished unhooking him. Then they went to push him downstairs and he started having Rigors again. SHIT. And again the MICU nurses are clueless about what to do. After a half hour they finally gave him more Demerol and he could relax. A HALF HOUR. I have been moving his arms around, stretching them and massaging Ben-Gay on his sore shoulders...the Rigors hurt him so bad last week and now this half hour did him in...his shoulders are so bad he can't hardly move. He can barely hold his phone to his ear. Poor Baby. I told them how to hook up his IV's so he could go to the bathroom, the nurse was skeptical and of course didn't listen. She said he could use the bed pan....ummmmm I reminded her we got a room with a bathroom and shower so he could use it. Tony has gotten up the last 3 weeks and went to the bathroom, I unhook everything and help him and then I hook it back up. I had the Dr. come to our room, the Dr told the nurse that he could get up and go. And then she wanted me to show her that I can unhook and hook him back up. I did. She said Ok. His pressure has dropped very low and he is getting the max amount of Neo to raise it. But it has started to get better..they skipped his 2:30 dose. They said renal failure isn't something to play around with and need to make sure everything goes back to normal, sometimes it doesn't work like that...sometimes it doesn't go back to normal. Tony has been very lucky.
The MICU room that we are in is big, has a bathroom, has a perfect corner with a window. My recliner fits perfect, I even have a nightstand...yaaaay! I am comfortable right now, Tony is trying..we are waiting for 7..then we get another nurse. We are not sure why everytime we're here he gets a nurse that is OCD and nervous and weird.
Ok so I just found out Tony will not get another dose of IL-2 today. His blood pressure is only normal because the Neo is maxed out at 250mg. (all day) and they had to give him Bicarbonate, magnesium, lasiks and less heparin. He has been vomiting and just feeling like shit. So they want him to rest tonight..I could use some too...the 225 times I covered/uncovered yesterday...well multiply that by 2 for today! BUT I'm smiling...Tony even said he liked my haircut and I seemed chipper. THAT is because I have found my peace for now....I know everything is going to be as God planned. That is my peace.....We are getting some rest tonight I hope..hopefully Tony will get his 6:30am dose tom. morn. Please pray for strength, comfort and peace for Tony...and of course strength and understanding and patience for me....Goodnight :)

Just another manic Monday....

We both slept as well as you can in the hospital, I had a hard time falling asleep..but I always do. The tech came in to put in Tony's PIK line, this goes into his arm and a small tube goes through his arm and ends right at the top of his heart. They get blood samples from this and give him fluids, meds, IL-2 etc through it. It has 2 ends so he can get 2 things at once. WELL they put it in and left. Then the Xray team has to come and do a chest xray to make sure it is in the correct position, it wasn't. The tech came back and pulled it out some. Did another xray. NOPE not yet...the nurse pulled it some more, they have a certain amount now measured. Another x ray..FINALLY. THIS is why they bring him in on Sunday so they can get everything done, blood work, etc then concentrate on the pik..because if that isn't in and x rayed by 1:30 he does not get his IL-2 at 2:30, he would have to wait until 10:30. He got his first dose of IL-2 and very gradually started to feel bad, just really bad. He was very anxious and fidgety. Very anxious...he just couldn't sit still and was getting cold. I've been here through all of this, and I have never seen him so strange. He was nauseous, and just sick. I sat on his bed, put my hand on his back and just prayed and prayed. I sent a text asking everyone to pray at once..we need some attention here!! lol Then I had the nurse bring him some Demerol...that always seems to help the rigors, and sick anxious feel. They were giving him 50 MG and the last time he needed more after 2 hrs and they said no. Then I talked them into giving him 25. So we made a deal against IL-2 protocol. Can they try to give him half at first and see if it works because he was having breakthrough rigors after 2 hrs. Then give him the other half if he needs it again. Well it worked tonight. Half a dose helped...alot. Now of course he isn't urinating because IL-2 stops some organs from working properly, and his creatinine is too high. They are trying to get everything under control, it is a big balance game...but he is for sure getting his second dose tonight at 10:30..yaaaaay!
The MICU manager came to apologize about some issues from last week, she is going to talk to her nurses and make it a point to get us a room with a shower when we move down there tomorrow or Wednesday. She is going to discuss how "WE" need to not feel unwelcome when we get down there and IL-2 is different then anything they have ever seen. Tony is NOT an invalid and should not be treated like one. I am not leaving Tony and they need to accept that too. I'm not a burden but a very big help to Tony and the nurses. The pharmacy boss and the tech that messed up last week also visited our room today to apologize about the delay in getting the IL-2 last Friday. She informed her tech how important and stat that IL-2 needs to be made and it must never be late.
Then we had several nurses stop by just to see how we both were doing and to say hello. Finally everyone here seems to want to make the IL-2 process "flow" the way it should. The next cancer patient might have a better,more comfortable time here. I hope so. Jessica was Tony's nurse today...she is our favorite!! She offered to bring me food, or milkshake or whatever I wanted...she is our buddy!
I didn't even want to leave the room today Tony felt so bad, so I ate his hospital food for lunch and dinner and was here when Tony needed me. WOW I think I covered/uncovered/covered/uncovered him NO less than 225 times today!! no joke!
I keep saying to him, "whatever you need baby, that's why I'm here...it's ALL about you"
I keep saying to myself.."this too shall pass, stay strong and keep smiling"
I know God answered some prayers today...keep them going please??? I'm going to watch the rest of the game and visit with Tony for a few and wait for his next dose. Thank You Jesus for giving me strength today...and for prayers answered. Amen

Back to UC for another week...

This is our 4th Sunday in 3 months that we've waited by the phone for a phone call telling us what time to be on the Oncology floor. They call us when they have a bed ready. Thank goodness they really love us here on the 8th floor, they gave us the BIG room today with double doors, it makes for a very quiet night! We got off the elevator and walked down the long hallway to the nurses station, the 3 people waiting there said "Yaaay you made it", and "welcome back!" and "Where have you been!?" All of them have been Tonys nurses several times. We got in the room and they already had sheets and covers for MY bed and extra blankets for Tony because they know about the rigors that he gets so bad from the IL-2. They even had ice water and cups for us. The nurse even filled out all of the ridiculous paperwork and Tony just had to sign it. His blood pressure was good, kind of high which is an awesome way to start IL-2! He said it was was from riding with me all the way to the hospital. I told her she should check mine!! GEEESH Tony has been a maniac driver lately..I was holding on, with my eyes closed at a few different times! ANYWAY...We like this room because you can see the pilots faces driving the helicopters when they land on the roof right above us...it's kind of cool. A nice distraction. They did some blood test and the doctors came in to talk to us. New residents....they don't know too much about IL-2 at all but I guess they will soon enough..The Doctor was very soft spoken...can I say how much I love a sincere, soft spoken, nice doctor, I like it a lot! He even sat down on the couch with me and went over Tony's meds. Tony doesn't know what he takes sometimes..it's so confusing the generic names, the label names and the hospital names are ALL different for the same medication. I'm kind of an encyclopedia about stuff like that so they just talk to me. THEN the nurse comes in with Tony's Tylenol for his back pain and I saw the bottles of brown liquid..oh no!!! I heard that music in my head when you see something dreaded and bad!! It was Kaexelate, his potassium is too high (caused from adrenal dysfunction or kidney problems, he has both) this medication will bring it down BUT he will be running to the bathroom as fast as possible for a couple days! He might not even make it sometimes, this stuff SUCKS (BAD)! THIS is why I remembered to bring the soft toilet paper! (2 rolls in my bag)
I saw the 2 bottles in the nurses hand and was waiting for Tony's response....yep, it was just as I imagined. SHIT he said and went into grumpy mode for a few! BUT he just saw a great pass on the football game and it took his mind off of things for a bit! Thank goodness! Now he is getting hot so I have to go adjust the thermostat and his covers. I'm getting sleeeepy!
Dear Heavenly Father, please watch over Tony as he begins his week of IL-2, this is the worst thing I have ever seen anyone go through and it beaks my heart but I know this is healing, and this is your will. Thank you so much for giving me this past week to enjoy my husband, my friends and family..we needed this break. Give Tony the strength to endure another week of treatment and let me find the strength to offer myself in anyway possible for him and be patient and loving when I'm too tired to do so. Please wrap your arms around him and keep him as comfortable and warm as he can be. Guide the doctors and nurses as they care for Tony this week. Let us rest peacefully tonight to prepare for the rest of the week...Amen

One Day at A Time..please

So as I'm sitting here with tears in my eyes, I am confused. I'm confused because I'm trying to figure out why I pray the way I do. NOT once have I asked God why Tony has cancer, or why he had to do this to us, or even ask to make him cancer free. What I always ask is to get through TODAY, to ease his pain, to provide peace and serenity to him and give me strength. hmmmmm I am just thinking why my prayers are so much different than other peoples. I think because I am so involved and so much in the middle of Tony and his battle with cancer. For me, I want him to be out of pain, to be warm, to get to the bathroom in time, for him to have his meds, and for him to sleep soundly and for him to smile today. THAT is what is important to me when I write this blog. I'm usually writing when he is in so much pain and under the influence of so many meds that he is sleeping and I am so very thankful and I'm trying to catch my breath. I want my husband, the man I spend every day of my life with to be as cancer free as anyone BUT when I'm sitting here helping him with rigors, and vomiting, and pain and meds...ALL I can think about is making it through this day. Because to think about next month is just too much for me. Even about next week is too much for me. We want to enjoy THIS week and we have so far! Even the amount of IL-2 doses isn't that big of deal to me...I know if Tony's body can't handle one more dose..they will not give it to him. The doctor last week said we give him what we can BUT we do NOT want to kill him. So I am leaving this up to the doctors and God.
Things will continue to be finacially tight around the Grainger home until I go back to work for sure and it is MUCH better when we both work. Just smart spending really, not unworkable. We have been blessed with some great friends and family that have given gift cards and went grocery shopping for us and helped with our home and Roxy and I have thanked each and everyone of them!!! but I HAVE to say how shocked I was to get an email showing someome paid on our cell phone bill. Paid alot. It was Tori, my 22 yr old daughter...She said she loves us both and just wanted to do that for us. I know I'm her favorite person in the world and I am thankful and proud. I love you Tori! I love you aLOT!
Tomorrow is a day of getting stuff done, cleaning more, cutting Tonys hair and making one of Tonys favorite dinners. As much as I HATE to think of next week....I have to get stuff done for another week in the hospital. I don't like to get overwhelmed and if I don't prepare I will be, Tony likes me alot better when I'm NOT overwhelmed. Thank you Jesus for giving us this awesome day and for the friends that we spent the evening with. Thank you for giving Tony the strength and comfort to get out and do some things today...He needed that! Thank you for giving me some time with just me..I needed that too...Please continue to provide comfort to me and Tony both this week as we prepare for next. Amen