Awesome weekend...

Last week Tony saw his Dr. She said Tony is doing well and to keep up with the Fragmin injections and meds. Try to rest. His next scan is mid Oct and his next appt to find out results is October 18. If the tumor is the same or smaller then he will undergo another round of HD IL-2 treatments. That is one week in hospital, one out, another week in and another out. Please pray....We are both trying to LIVE and NOT focus on this right now...I LOVE the living part of our life!!! We are having a good time celebrating NOT being in the hospital right now and trying to focus on our life together. We had a nice weekend just getting away and enjoying each other. We frequent Marriott hotels so we have lots of reward points. How awesome to stay away for a weekend for free!!!! We went to Bardstown this weekend and went to Makers Mark, Wild Turkey and Heaven Hill (makers of Elijah Craig and Evan Williams) YES I LOVE bourbon! We had alot of fun! WE REALLY needed to get away from here, away from Ohio and away from the hospital. We also went to Bluegrass Speedway and watched a big race...ummmm This was the DIRTIEST race I have ever been to...didn't like it much..at all. Imagine ME covered in dirt...ughhhh well never mind...don't do that! BUT I am all about trying....I tried. And I smiled!! Watching some young Amish couples smoke and get drunk was toooo funny! WOW they were drinking and running to the bathrooms ALL night! I don't think I've EVER seen that many drunks at a race either....I felt a little out of place! I should have snuck in some bourbon!! I don't drink beer much at races...i HATE to stand in line to pee!!!
My rash is getting a LITTLE better...Tony's dry itchy skin is a little better. He still LOOKS like he doesn't feel well and just seems very tired but everyday he is getting better. I have to go back to work tomorrow and am dreading it but looking forward to seeing some friends that I've missed. Thank you Jesus for prayers answered. I don't ask the impossible...just to help us get through TODAY. Thank you for that...Amen

Thank You Jesus

The blogs are going to get fewer and farther between! Tony is feeling better...not great, far from it but better. He looks very worn out and sickly. But I love him!! We went to visit our good friends Dale and Kathy today in Felicity...it's always good going there..I just love them. Tony has been great friends with Dale FOREVER! Them two actually had a bet that Tony would never ask me out..Dale told him he had until the end of the week (back in 96? 97?) Tony didn't ask me...I asked him. hahahaha Then we stopped by Rick and Jenny's of course...our best buds! Jenny sends us homemade breads and soups all the time..OMG enough with the Zucchini bread...I eat WAY to much of it!!! Tony likes to stay busy right now...he sleeps LATE (like 1pm) but then he wants to be with me all the time and he wants to run run run...I AM TIRED TONY!) but I do what Tony wants..I'm all about him right now! as I should be! OH and MOM....thank you so much for the check you sent to me and Tony!!!! That is so useful and helpful right now...I cried! You really shouldn't have!!! You have your own medical problems and your own bills mom....I love you so much! Tony has a Dr appt. tomorrow. We will schedule CAT scan and tests, they should be sometime in October. Blah I hate waiting that long but it takes at least 6 weeks to see if tumor is shrinking...
I just started talking to a woman who's husband had 49 HD IL-2 treatments several years ago. He has been cancer free for over 4 years. Bless them. They even live in this area. I will find out more of his story soon.
My new meds are making me so fatigued and downright tired. Im still itching the worst ever but the Dr. called me in prednisone for that. UGH I hate that stuff! Tony says i'm GRUMPY! but yes these meds do that me...sorry baby! well That's it for now...thank God things are getting better..I NEEDED better..Thank you Jesus for prayers answered!!!

I'm stronger than I ever knew....

We woke up today kind of late, Tony hasn't been sleeping well the past few nights. I had plans to meet my friend Kelley for dinner tonight. Tony asked if I minded if he went with me and he could meet his friend Jeff for dinner. These are our coworkers and good friends!! Of COURSE I didn't mind! If he felt up to it I would LOVE for him to go. I had several errands on my agenda today. We got ready and then he rested. He gets so tired right now! But we ran some errands, of course my driving almost gave him a heart attack, but it does anyone! I HATE to drive and just like to get to my destination as fast as possible! We went and picked up Tonys medication/prefilled syringes from pharmacy..ummmm thank GOD for our insurance. He get 2 injections a day, this comes to almost $6000.00 a month. No wonder I had to spend a half day on the phone to get them approved! I called around and found someone on a scooter that could give Tony a ride in the plant, he felt too tired to walk around much! Thanks Uncle Carl!!!!! Tony visited some friends and went out to eat with Jeff. Me and Kelley got in her car and she handed me a card and an adorable little box. The card was amazing! I will type it at the end of this post...I cried! Inside the box was a list of names of people me and Tony work with, some friends, some co workers. There were 2 awesome yankee candles inside and cash.. a LOT of cash! OMG I cried and cried. This just astounded me. The list of names were people that gave money to Tony and I. Then Kelley told me that she purchased (her own money) lots of yellow Livestrong bracelets. Everyone that gave money for me and Tony received a Livestrong bracelet. How awesome is that to help us and raise awareness...Kelley is just awesome. I love her! XOXOX
I finally found Tony at the other end of the plant talking to his boss and Tammy, I knew we had to go....we were both so tired! We stopped and picked up a few groceries and furnace filters. (stuff you don't think about while you're sick!) Tony is still very very worn out, but he is feeling better, his color is back in his cheeks and he was very glad we got out of this house! We had a pretty good good day! thank you Jesus for giving us this day!

This is what the card read that Kelley got for me and Tony..
"The Oak Tree" (a message of encouragement)

A mighty wind blew night and day
It stole its boughs and pulled its bark
until the oak was tired and stark
but still the oak tree held its ground
while other trees fell all around.
The weary wind gave up and spoke,
"How can you still be standing, Oak?"
The oak tree said, I know that you
can break each branch of mine in two,
carry every leaf away,
shake my limbs and make me sway.
But I have roots stretched into the earth,
growing stronger since my birth,
you'll never touch them, for you see,
They are the deepest part of me.
Until today I wasn't sure
of just how much I could endure.
But now I've found, with thanks to you,
I'm stronger than I ever knew.

Especially now, try to remember that you're stronger than
any problem you encounter or any disappointment life will bring.
Thinking of you
Believing in you
Caring for you...Goodnight all...I hope you had a blessed day...I did

Wednesday_BLAH

My ass is so worn out today, more than EVER. Everything is just so overwhelming. Fighting with the insurance company to get Tonys injections...the script is for 60 (2 a day for 30 days) BUT the insurance co. says they are too expensive. They gave me 4 days. So I had to call them, call the Dr., call the hospital, call the pharmacy, multipy by 2. Ok that was half of my day. Tony was HORRIBLE yesterday! So tired and sick. I just felt so bad. I had to leave for quite a while. My Dr. sent me to UC to see a special Dermatologist. I am now diagnosed with "Prurigo". hmmmmm all I know is I'm itching all the time and embarrassed for anyone to see my legs and arms. I am itching to death!!!!! I was prescribed Methotrexate, a Chemo med that is also prescribed for arthritis and severe Psoriasis and some cancers that didn't respond to other treatments. I have tried everything else..EVERYTHING for three years, I don't have any other options but I'm not happy with this med and all the side effects and tests. I feel like shit. The Prurigo can be caused by different things but anxiety and stress does not help it. Today is the worst it has ever been. Even Tony is feeling sorry for ME. ahhhhh That's just not right!!
So the tears have flowed today. Tony is getting depressed and is just overwhelmed. All the meds and Dr. visits are so expensive. I was going back to work Monday and now I'm laid off next week. (just for a week and I really need to get used to this med anyway and rest) Anthony came to cut our grass today and a belt came off of mower AGAIN. So Tony started saying how everything was too much for us and we needed to move. I really don't know what else I can do. HE went out and helped. ughhhhhh...HE shouldn't be doing anything right now! He can't hardly stay awake for more than 2 hours. This place was HIS dream when he recovered from his nephrectomy 3 years ago. I'm NOT going to let him give up his dream. So what, our garden is weeds, our pond is low, our mower is screwed up...so what? We have each other. I made him dinner, exactly what he asked for, we walked out and got the mail together earlier, and walked the trash out this evening. We held hands and really really enjoyed the breeze and the peace. What a perfect evening. Maybe my tears will go away some tomorrow because holy cow they couldn't get much worse today. Last night was overwhelming and today has only been a little better..PLEASE pray that tomorrow is A LOT better!!!
Thank you Jean for the Kroger and CVS gift cards. We have been keeping CVS in business! I need some sleep! Tony just went to bed. Tomorrow has to be better!! Im sure it will.....

HOME SWEET HOME

This was a long overnight period. I think they gave us 2 nurses and were waiting behind the curtains with candid camera. They turned on full bright lights EVERY TIME they came in. They woke us up and turned them on to give him Tylenol....really? It was never ending....For the love of God..LET US SLEEP. Our wonderful morning nurse Jessica told them we gotta get going asap! So we were out of there very quickly. Doc said to Tony "you just saw me today..don't come in tom. come in next week! yaaaay! Tony walked right into the house and laid right down on the couch at 11:30, I didn't see his eyes again until maybe 5pm. He feels very bad right now, still itchy, a little nauseous and he said "just sick" cold/hot. Skin is peeling. I helped make him an Aveeno bath and rubbed it on his back. I put powder under his arms..they look like they have been sunburned from the inside out bad and are peeling terribly. His collarbone feels like he's been beat up or ran over. In general..he just feels like shit. I woke up feeling like I was getting a cold and I can't think straight I'm so tired. I wrote a check at my Dr. today and ask what the date was..she said the 16th.......hmmmmmm I said ummmmmmmm what month? and I was serious. I can't think when my brain is overloaded AND I'm lacking good sleep. wow I felt dumb. I made Tony some soup and went and took a shower..when I got out I had a text that said "more please?" hahahahhahaa Tony didn't get his fill I guess.
I'm not sure if everyone knows this but Tony has been diagnosed with Metastatic disease. From what I understand, His first renal cell carcinoma was not all removed, not all of the cells. The cells traveled from his right kidney site through fatty and fibrous tissue through his body and eventually ONE of the cancer cells started growing in his Adrenal Gland. The doctor says when that happens its called Metastatic disease and there are and will be more cancer cells grow, eventually. The tumor is far away from the first tumor, that's important. If the IL-2 works it will stop the growth or slow the growth. We are hoping for the best but there are several medications (Sutent & Avastin) that can do wonders for kidney cancer right now as well, and they are studying stem cell transplants. It works better with lots of siblings! More chances for a match. I will make sure we weigh all of the best options if we have to do that. Metastatic is a word you NEVER want to hear...ever. But you know what???? Tony was joking with me today when I was giving him his injection, I'm so much better at it than the nurses he says! He was funny a few times tonight. He hugged me tight and told me he couldn't have done it without me...none of it. So TODAY we are awesome, we are home, we are in our bed, and watching Jay Leno, and Tony will get better all week..I need to sleep...hopefully better blog tom. and the next day and the next :)

Sunday! Tomorrow we go home :)

Last night Tony started itching again...OMG I don't think we could have another night like Friday. UGHHHHH The itching wasn't quite so bad but neither of us slept. It was bad enough. They were giving him all the meds that they could, I rubbed some lotion on his neck and shoulders. I dunno why it's at night? The nurse came in all night long to fix his BP cuff and give him more pills...it was just continuous. Actually it was so bad, me and Tony were eating chocolate chip cookies at 4am and I was doing my Frontierville, I have been working on that farm so much this week Tony asked me if he could see my farmers tan. lol Silly Man! This morning first thing they said he hadn't had any Neo to raise his pressure all night and it's holding around 95/70 so we could go to a regular room! WOOTWOOT! HALLELUJAH. We need to sleep so bad that is all we can think about! Finally we went upstairs, we had a GREAT view of the city (8th floor). I got Tonys stuff ready so he could take a shower, he hadn't had a "shower" since last Sunday. He couldn't wait! As he was in there I thought I smelled smoke. Then I was sure of it. I mentioned it to the nurse, yep they have had a problem with the woman in the next room. The manager will probably kick her out Monday. She is smoking in her bathroom. But in the meantime Tonys Dr. came in and said he needs to move. Tony shouldn't be around that at all. His lungs are fragile. IL-2 is the hardest chemo there is, so you can imagine how harmful smoke could be to Tony right now. I'm just thinking "hmmmm what a freaking dumbass!" to be smoking..in a hospital, on the oncology floor. So we moved rooms, a much bigger room. A huge shower but not the magnificent view. I just wanna sleep anyway...who cares! My sister called and asked if we wanted her and her family to bring us dinner. Tony said YES, I want Larosa's. So after he had a 3 hour nap and I had a 2 hour nap..my twin Toni, Russ, Shelby and Sierra brought us pizza and diet Mt. Dew. This was the BEST! Hospital food is ok but after a week in ICU we both needed real food. Ashley and Meg brought me food last time we were here. Food brought in to patients and caretakers is ALWAYS welcome...lol just sayin! Well it's Sunday night now and Tony started to itch again. The nurse already gave him IV Benadryl and I rubbed and rubbed tons of lotion on his neck and back. We will see (Please God Let us rest?? no itching pleaseeeee. Amen) His creatinin level is already down to where it needs to be to go home but we have to wait until Tomorrow (THANK YOU JESUS) I have a important cardiologist appt tom. that can't be canceled, We were hoping we could go home Today but Yaaaaaay! Tomorrow is fine. Tony has an appt with his oncologist on Tuesday and we will know more about when his scans are and what to do next. I am sitting on the couch that pulls out to a bed, I napped here today as well. Do you even know HOW awesome it is to lay flat, on your side, or however you want when all you've had for a week is a recliner? I woke up every night about 125 times, with numb arms, hands, legs, ass. I can't wait to sleep tonight. Thank you Jesus that Tony is now healing and we are almost home!! Amen

Saturday, In ICU still....

Tony's itching just got worse throughout the night last night. He didn't sleep for more than a maybe 20 minutes at a time but even then he was scratching and kicking and moving around all erratically. I was scratching him and calling the nurse. Scratching him and telling the nurse to call the Dr. SHIT...i really had NO IDEA what I could do to help him...I'm sitting here typing this with tears streaming down my face at the thought of such pain and my helplessness. It was 3am and it was all I could do to hold my eyes open. But I stood next to his bed with my hand rubbing his hair for almost an hour..just praying, pleading and begging God to provide comfort for Tony and give me his pain and his itching. I couldn't believe how bad he was. I stayed there because it seemed to give him a little comfort for a while. I don't know if it was working but I felt like it was for a little bit. Then I just sat on the edge of my recliner praying even harder. Tony had so my medication he couldn't hardly speak but he could scratch. I don't think we started to really try to sleep until about 7am..and even then no one would leave us alone because his pressure was low..until about 10am. We slept until about 1 I think. His itching pretty much stopped by then and he ate a little lunch and slept. If his blood pressure stays up over 90/60 for a while they lower his med dosage that raises it. then we can go to a regular room with a couch and shower. Nope..it's not gonna happen today. Every time he sleeps his pressure drops. So we are stuck in ICU tonight too. Tomorrow hopeful we will go to a regular room and he can't go home until his Creatinin is 1.8-2 and right now it is 2.6 and it was 2.7 for the past couple days so I'm not sure how long that will take...I was hoping a few hours :) But I don't think so! I went downstairs and got us dinner and we ate together and chatted some. But he still feels pretty rough. My bed is calling my name so bad that is all I can think about right now...this chair SUCKS! I freaking HATE it! I really want to scream "I HATE THIS CHAIR" but I think they'd kick me out! I thank everyone here at U.C. Hospital who made it possible for me to stay with Tony for these 2 weeks and the nurses that brought me snacks and took care of me and Tony so well. Jessica on the 8th floor is just amazing! We love her! and Scarlett in ICU is very professional and took care of EVERYTHING that all the other nurses didn't feel like doing...very efficient! I like that in a person. Several nurses that Tony had last time came to check on us this week. So sweet! I hope to become sunshiny Teri again and not always sound so gloomy but Holy Cow this week......this was the week from Hell! I'm going to watch some TV with Tony now.... Kisses to Tori who is taking care of house and Roxy this week! Keep praying for me and Tony. And keep praying for my broken hearted loved one...please. Thank you God for prayers anwered!!!

LAST DAY of first cycle of IL-2

I was trying hard to be sunshiny today, Tony was feeling a little better. We were trying to sleep in like usual (the nurses joke with us daily about how they can just leave us alone ALL morning long because we're late sleepers, and that the room is "the cave" lol) when the doctors all came in, they told us Tony will only get 1 more dose of IL-2 today, she said Tony's body cannot handle any more. His blood levels are not good at all. His creatinin in his urine is "waay tooooo highhhh". She also said because that level is too high he cannot go home until it gets normal because he cannot get his Lovenox injections with that high level, they give Heparin drip (IV) in the hospital but we can't go home with that. So we might be here until Monday she said. (Please God...let us go home Sunday...Amen) Then the nurse came in and said we are now in isolation...because Tony might have something called "C. difficile" and that it is very very contagious. Especially in ICU. People get this when they are on antibiotics for a while, on Chemo, immune system is weak....that's Tony! So they wear a gown to come in here, wash hands before and after. I have to wash a lot. Be careful sharing Tony's bathroom. Older people and children are more susceptible.
They gave him his IL-2 at 3pm. By 5pm ALL of the side effects that I have told you about were in FULL effect. He was itching so bad, they gave him 3 medications for it, I was scrubbing his back and neck with ice water soaked wash cloths. The doctor ordered him some Hydrocortisone cream. (I have read EVERYTHING about IL-2 and Proluekin..I remembered reading that you shouldn't use hydrocortisone or cortisone with IL-2) The nurse told the doctor, she did some research and found out nope...no hydrocortizone cream should be used. (Our friends from Europe gave Tony a T-shirt once that said "my wife: a walking encyclopedia", they always thought it was so funny that I research EVERYTHING") I don't know what would have happened but I was glad they didn't use the cream!
I had them bring an ice pack I put on his neck, that helped some.
Tony was so sick today. He looked worse than I have ever seen him. EVER. I think that's why I was so down and sad and overwhelmed today. He looked worse than he looked when he had his kidney removed...it brought back a flood of memories. I wanted to forget them. I almost had! Tony's lips were GRAY. He looked like death, sunken dark rimmed eyes, so thin. I hate it... HATE it.........
I was just nervous today, my hands were shaking so bad I could hardly text or write. So if I didn't send someone something I should have...sorry. This coronary spasm thing that I have going on does NOT respond well to stress. Or lack of sleep.
It is now almost 10 hrs after his last dose and Tony is still itching, pressure is still low and he is trying to rest. He is finished with the cycle of IL-2 for now. He has to wait 2 months for a CAT scan. Then IF the tumor is smaller or the same..He will do all of this again. I have talked to several people that have gone through this and read that if the tumor shrinks, the earliest that this may be noticeable on scan is 4 weeks after. But they can see more in 8 weeks. Tony's body is tore up inside and it takes that long to get back to normal. So I'm trying to NOT be pissed about that and trying to learn patience. TRYING.
A friend that me and Tony work with sent this to me yesterday ..I read it to Tony tonight and he thought it was awesome, so I'm sharing it ...anything to make us feel better right now..

Just read the blog-my heart goes out to you, but at the same time it is such insperation (for all who are so thankful that we aren't currently in your circumstance) to see the love and selflessness you exhibit-when so much of what we see everyday is selfishness and disregard for others.
It's such a beautiful reflection of who you are, and how you fight thru this together, the world would be a better place with more Tony's and Teri's--makes me thankful to have the pleasure of knowing you. I'll keep You and Tony in my prayers. God bless! Please call if I can help you in any way-it would be my pleasure!

Thank You! That made me cry and feel very blessed. YOU know who you are and Bless you!
Dear Heavenly Father...Hold Tony in your loving hands tonight and help heal him..I need him..we all need him..and comfort him beyond belief, he has been through more in his life than anyone should..please comfort him and show him your love and peace...please let his tumor get smaller...please Father...and please slow my heart beat down enough to get some rest tonight...help me just breathe...
And someone very close to me is suffering from a very broken heart..please help heal it fast, my heart breaks when his does..and I just want to give him a very very long hug...hug him for me God.....Amen

Friday the 13......morning

Today is going to be tough...Tony will probably get a dose at 3pm and another at 11pm. That means all day and all night he will be sleeping or sick...let's hope sleeping!!!!
I was so worried about Tony not getting enough doses of IL-2 this week. I've had a few email conversations with a man who has had more IL-2 than anyone known to me or several peeps in Kidney Cancer Chat. Over 50 doses and 6 weeks inpatient stay. So I have asked him a few things this week. This was his response to my concern about maybe only getting 6-8 doses this week:

Teri,
Six doses is just fine. I just came back from a presentation by the oncologist who administers my IL-2. He told the room that getting six or seven doses is common. He also said (and I've heard this repeatedly) that there is no known metric for success in terms of how many doses you take. The oncology community has no idea if three, six, eight or ten or what is the magic number. There have been people who have responded to very low numbers and there are people who have had very high numbers who did not respond. So, in short, tell Tony not to worry. It will either work or not, but the number of doses is not the key factor.

So now I'm not so worried, anxious, pissed etc that he isn't getting enough. Right this minute Tony's blood pressure is fine 97/55, he is sleeping and peaceful. Right now..We are ok.
God has a plan for Tony, and he knows what he is doing. I have to have faith in that and stop being mad. I will try..FAITH is the only thing that will help me understand.....

Is is Thursday??? I have NO idea!!

I'm just going to start off apoligizing if I repeat myself, I just type what comes to mind. I don't know how many times I do repeat myself but I'm sure it's tons!
Today for me is just kind of a blur, I am exhausted..Tony is exhausted. We are both grumpy and right now I'm hungry, which anyone that knows me..knows that's not good!
Tony did get his IL-2 at 7am today, we rested through it and for a couple hours after, of course then he gets cold, started shivering terribly, blood pressure dropped and he started itching. Itching TERRIBLE. I scratched and scratched his back (ummmm i HATE to scratch bare skin by the way ughhhh yukky, BUT I did, smiling!!!) I rubbed him all over with cold scratchy wash cloths, that helped until the meds kicked in. Tony will NOT want me to go into details about this, but when he has to go to the bathroom, I have to gather up 3 IV lines, untangle them, unhook the "monitors from hell", take off blood pressure cuff, unhook other IV pole, and get him into the tiniest bathroom EVER. In time. Thats all I'm saying...but WTF do people do when they don't have a wife here to do everything? Fix fan, cover up, uncover, feed them, because they have IV stuck in both arms and can't bend, wash hair, scratch back, change pants, remind nurse to have meds ready for his "rigors", CAN YOU TELL I'M WORN OUT????? But really...what do people do? starve? shit themselves? itch and can't scratch? I'm sooooooo glad I am here for Tony and I'm so thankful that I can be. I will NEVER leave him here without me...just sayin!
Tony was very edgy today, the IL-2 causes that. He asked me to please understand and don't take anything personal. I don't. I love him, he loves me...I know he is forever grateful for everything that I do for him and everything that we have been through in the last 12 years. Tony got another dose of IL-2 at 3pm today, all the same side effects..only worse itching. UGHHHHHHH He gets cold/hot/cold/hot multiplied by 10. They gave him so much meds for his side effects he couldn't stay awake, He couldn't hardly speak, I couldn't understand him anyways. I heated up some soup (he is never hungry during "normal" hours) and he ate the whole little bowl. This was the ONLY thing he ate in the past 30 hours. So when the Doctor said NO to his 11pm dose of IL-2, Tony was pissed. Pissed because he was trying so hard and he just felt let down...so did I. Tony told me to tell the nurse to call the doctor back and tell him that he came for IL-2 and if he can't get it he wants to go home. I told her, she called Doctor back...still NO. But now I look up and see his blood pressure is 67/23..SO I GUESS they made the right decision in witholding his dose. I am feeling the life getting sucked out of me today...bad. I'm hoping my sissy brings me some freaking Chopotle tomorrow!
Tony is still scratching, in his sleep. I hate when I can't do anything...ANYTHING. BLAH Tomorrow I will be more positive and sunshiney......not now. Dear God, Strength?????? Amen

Frustrated Wednesday

Tony did not get any IL-2 today. This is the reason for mine and his frustration. THAT is what we are here for. I understand that his blood pressure is only tolerable because of meds. That his potassium is sky high and being controlled by meds. That he cannot urinate at all...unless they give him meds. That his blood sugar is being controlled some with insulin. That is blood is not causing more blood clots in his legs because of a heparin drip. That his white blood count is high and platelets are out of control. That his creatinine is sky high and his kidney isn't functioning well. BUT I feel sad, let down, out of control, pissed off and alone...because he is laying here in ICU NOT getting his cancer treatment. I NEED HIM TO GET HIS IL-2. NO I do not want it to compromise his health because I need him..now. BUT I need him 20 years from now too! I'M JUST VENTING....
I washed his hair today and helped get him washed up....he felt a little better. He ate a little bit. His pressure is coming up some, everything should be working better soon..he has not had IL-2 in the past 32 hours. I know that this is fairly normal. BUT I feel like the more treatment, the better chance it has of killing his cancer. It's been a tough day for me...sitting here..EXHAUSTED while Tony is NOT getting IL-2. UGHHHH
Maybe at 6am he will get his dose. We will see. I have cried a lot today...just because. Because of everything. I guess everyone that goes through this has days like this. I like to take care of things and take care of business and I am on the ball...I like making sure things are ok, people are ok and I like to do a good job. Right now...nothing is good enough, he is not ok, I am not ok and I'm so freaking sad and mad. I can't take care of my own health right now..I just don't have time. My close friends and family know what I'm talking about...I just hope I can stay healthy enough to be everything that Tony needs...I will be. It's amazing how "you ARE what you HAVE to be"...when there is no other option. But I wouldn't or couldn't be anywhere else...Tony is MY life...and I am his. More than either of us would ever have imagined. Everything is going to be ok!....I didn't make too many phone calls today or the usual texts because there was nothing new to tell, we both felt blah!!!! We just spent some time together...OH Tony did laugh during "Family Guy" right after I said I needed to see him smile soon. That made me feel better and him too. Now I can sleep!
Dear God, I need my husband..make him well..make me well and give us both strength...and I need a good nights sleep please..Amen

Really...it's ONLY Tuesday afternoon??

After the last blog and Tonys dose at 11. His blood pressure dropped some, he was so sick again. AND we had the lazy nurse that sent us to ICU last time. So of course..at 3am she sent us back down to ICU. Some of the other nurses did everything they could to keep him on the Oncology floor, they gave him more meds, took his pressure when he was awake and NOT directly after his IL-2 and Demerol etc. Anyway so we are in ICU now, Tony slept through the whole process..he REALLY didn't wake up much at all. They had me a recliner and blankets and pillows all ready for me. I hadn't slept yet. They got him all hooked up and started giving him Neo to raise his blood pressure. They finally figured out that they needed to move all the limits on the monitors because they had to keep running in every 5 minutes because his pressure would drop below 80 and it would beep beep beep. The nurse was pretty good last night, he got a lot of info about IL-2 info from me because they don't really know on this floor. I slept a tiny bit after 5:30am. They came in to give him his IL-2 again at 7am. He slept. I slept. At 9am HOLY SHIT, Tony was nauseous, started throwing up again,and was freezing and shaking (they call this rigors), I covered him, again and again. I gave him my cover and froze just to get him warm. I called the nurse first for nausea meds, then his pressure dropped, called her for neo. Then I called her for Demerol when he started shaking and rigor. She said they didn't have any ordered, and what they did have ordered for this side effect they didn't have any...(breathe Teri and try really hard NOT to F!@#$ing start screaming)...I started crying..Tony was shaking so bad I couldn't understand him. I was laying over him some to keep him warm when I told her through my tears and teeth "YOU better get some NOW if you have to run upstairs to his old nurse for some" and "CALL the pharmacy NOW". She called both places and the doctor. Another nurse peeked her head in and asked if Andrea (his nurse) was in here...i said "NO, SHE BETTER BE GETTING HIM HIS DEMEROL". She said she would help. Finally (20 minutes ughhh) they came in with some...put it in his IV and 30 seconds later he was warm and fast asleep. And I was SO PISSED. I told her I didn't want that to EVER happen again. He is here for treatment, they have protocol for what to do and what to give for EVERY side effect and I would suggest that they check NOW and make sure they have everything they need BEFORE his 3pm dose. She is now carrying around a dose of Demerol in her pocket. Tony hasn't eaten since 3pm yesterday, he did ask me to get him a diet Dew...I did. About 1 Tony started sweating, and was hot. This wasn't a "normal" sweat. It was rolling off of him, the doc said his kidney is not functioning much right now and the IL-2 prevents fluid from being absorbed so it is coming out of his pores. I have changed his sheets twice today and I washed him off and help change his pants and gown. I had the nurse order him a fan, they said we probably wouldn't get one....I think I harassed them enough...they got him one! I'm freezing BUT as long as Tony is comfy! Then Tony had to go to the bathroom, NOW! Of course..no nurses, I unhooked everything except his Neo...grabbed a nurse from the hall and got him to the toilet with like 0 seconds to spare. Holy Cow I am worn the hell out...someone said, I think Tonys friend Jim on FB chat, that is was almost hump day....WHAT it's NOT even Wednesday YET?? you have got to be kidding me! :(
It is 4:20 right now and he is getting his fourth dose of IL-2 this week and is sleeping soundly through it! Oh and did I mention that when Tony wants to change or get washed up or anything..he wants it RIGHT NOW? Dear God...please give me strength, I need it now more than I EVER have needed it. Please help me with understanding and compassion and patience too....And wrap your loving arms around Tony and help comfort him this week...I ask this in your name always.......always

Monday...after 1st and 2nd HD IL-2 dose

Well Tony had his first HD IL-2 (high dose Interleukin-2) at 3pm. He was doing ok for a little bit. Then BOOM. He is feeling horrible and weak and nauseous. He started shaking and is freezing. I have 4 covers on him now and his prayer shawl that was a gift from friends, I also have on the bright hot light above his bed. They gave him Demerol (helps with shaking (rigors) and cold) and they also gave him 2 different meds for nausea, finally an IV med since he threw up his pill. Now he sleeps...Thank you Jesus, He sleeps! The doctor and friends in my Kidney cancer chat said that second round IL-2 will kick his ass! and they wouldn't wish it on their worst enemy....so now I will just pray and try to keep myself strong for Tony. He ate a chicken wrap for lunch but nothing since noon. It is now 9pm. Please pray for Tony tonight..I will finish this blog after his 11pm dose. Please continue to pray for my mom as she is not doing well, the docs don't think her heart can withstand any type of surgery..so just pray for Brenda, my mom has to be ok. And our best friends, Rick and Jenny, Their Grandma (Ricks) is in ICU right now, she had a stroke and is not expected to recover. Please pray for all tonight???? please.....
It's 11:15 pm now and Tony just got his second dose. He really hasn't woke up much since I was typing this earlier....I have to sleep now. I was up ALL night last night for some reason..I think it had something to do with a Large sweet tea from McDonalds! ughhh I didn't make that mistake again! Tony woke up for a few and was HOT..i had to peel off covers and turn a/c back down. Sadness is stting in right now...I need sleep...goodnight all.....

Sunday 8-8 and Monday morning...

Well we were waiting and waiting for the hospital to call Sunday to say they had a room, last time they called at 8 am so we were thinking this would be early too...nope. We waited. Tony went and picked some of the garden, I fried the cabbage he brought in with the fresh cayenne and ham. OMG this was soooo good! Tony ate ALL of it! Tony has been having some pain in his right side/back since Sat. evening, where his kidney WAS. This pain got a lot worse today and he has had to start taking pain meds to control it. (They are doing a CAT scan in a few minutes to see what is going on.) The hospital finally called and we left the house late afternoon. The room isn't as big as the last room :( but it has a great view and this floor is very nice anyway! Tony has lost about 8 lbs since he started treatment. I can tell his face and neck look thinner...it reminds me of the few weeks BEFORE we found out he had cancer 3 yrs ago. He just looks sick. It makes me so sad. They went to put in the double PICC line today and the tech couldn't understand why Tony dreaded it so much. He said this procedure always caused him pain. She put the needle in his right arm and then went to put the PICC in..Tony cringed and SHE felt what caused him pain. She felt that there was something wrong in this vein. Gayle, the tech said his right "basilic" vein has a bad spot, a bend, a rough lining or something. Something was stopping the PICC from going in smoothly. Tony had this problem last week and they pushed it in anyway (twice). He had this problem 3 years ago and they put it in his neck instead of his upper arm. She used a different vein and there was no excruciating pain and the Picc went in fine. NOW we know. Now we wait to see if he gets his IL-2 today.....I will post tonight

Saturday 8/7/10

Well I haven't blogged for a little bit because I'm sure no one wants to read about our boring little life :) But we have had a pretty good weekend. Thursday I had a "take care of Teri" day and it was much MUCH needed! and my nails look so much better now! Thanks to everyone that was included in my day!! Tony had some visitors Jeff, and Jeff and Dale. Tony was still feeling very tired and just not good some of the time but he really really needed friends! Friday me and Tony had a long day! We went to The Landing in New Richmond and saw his old friend and had lunch. We visited a couple more friends and drove and walked by the river. We went to Devou Park, Ault Park and Eden Park and just walked around and checked out the views. The breeze was awesome! It almost felt like fall! We went to Red Lobster with Rick and Jenny, Tony was feeling pretty good...We hung out at their house for a while and me and jenny had some of my homeade wine! We just had a good time with our bestest friends. Today we stayed in bed until about 1pm hahahaha and then got ready and went to Goetta Fest in downtown Cinti with Rick and Jenny and My sissy Toni, Russ and Sierra. Ughhh we ate too much and "I" drank too much beer! But we had a lot of fun! My feelings are getting a little blah as we get ready for another week long hospital stay! UGHHH! I've been running around since we got home...cleaning floors, bathrooms, laundry, packing...just making sure everything is done before we go! ummm and wow Jeff AND Angie...thanks for the gift cards!!! Kroger and gas is ALWAYS NEEDED! Now that Tonys doc is an hour away that helps a bunch!!!!! :) It's so awesome to realize how many great friends and family we have! We spend so much time at Ford and have made some great friends...it is awesome that you haven't forgot about us!! For anyone that prays...don't forget my mom...she fell, tore some muscles in her knee and now her back is so bad she can't hardly walk or move for that matter...keep her in your prayers please....until tomorrow

Wednesday 8/4/10

Tony had a better day today! He is still feeling bad on and off. BUT he rode his tractor out to the garden and picked some tomatoes so I could make some fresh salsa today! (I am VERY allergic to tomato plants) He NEEDS to get outside everyday! He can't stand for long but if he is moving it's not TOO bad. Tonys sister Kathy sent us 4 gallons of this sauce that is used a lot in Florida called Boom Boom sauce. It is AWESOME! So I made Tony some boom boom chicken today and fried zucchini and jalapenos. Kathy also sent us all kinds of frozen food today so I wouldn't have to worry about cooking and could just take care of Tony! TONS of chicken and wings and dinners! and wow this will be a huge help! THANKS!!!! It's really difficult to keep up with everything when you really can't think about anything else except your husband!!! :) Rick and Jenny were here today for a little bit...we missed his 40th birthday so they had to come over to get his gift! and of course eat! We always do that with them! lol Tony had a good day, his sense of humor was awesome! and when them and Jim and Jeff were here he was feeling his best! fun friends make us both happy! Tori my baby girl came over today and ran some errands with me today! It was nice to see her and just talk to someone! I'm trying to get everything done and clean and ready for another week in the hospital! Everything is ALMOST done! bank, grocery, gas, dog, cleaning, bills, it's difficult to make sure everything is in order for a week or two...it really is! But I am ON the ball! I want off for a little bit now though! lol
I started making some "balloon wine" 2 weeks ago...I was excited that it was finished today, I strained it and re bottled and now it is ready for me to drink!! wootwoot! Tony said the kitchen smelled like a winery....mmmmm I love that!!!
So for the most part and a few rough spots..Tony had a good day...We are both still so exhausted and just need rest.....so night night :)

He still used the steps!

Well I still didn't get enough sleep...or at least that is what it feels like. I hope this exhaustion goes away!!!
WOW they said Tonys skin would peel and and be very dry..ummmm his face, head, hands, ears (inside and out)are all peeling..bad. He just looks so old and sick right now :( I don't like it, he don't like it. It will go away!! it will!
Tony slept through a message from his doc this morning asking him to come in at 11 for a Doppler ultrasound on his legs :( I called and they said well he has an appointment with his oncologist at 1:30 so she will see what his legs look like then and maybe they can send him across the hall to vascular for tests. So when Tony got up this morning he was in a lot of pain still, he couldn't hardly walk to the bathroom...or even just stand there to pee. He was in a LOT of pain. I helped with his shorts and socks and finally into the car. His legs are ok laying down or sitting on soft surfaces so the drive that I was dreading wasn't too bad. (The doctor is an hour away) Well we got there and I got teary eyed. 3 years ago after Tony had his kidney removed and was recovering he told himself that he was going to be ok as long as he could make it up the steps and not use the elevator. I thought for sure he was going to use the elevator today...he didn't. Did I mention that Tony is bad ass????? He walked up the steps...slow...but he did it. On the way down..it was harder...he said he wished he would have used the elevator..but he didn't. He made it! yaaaaay!! Thank you Jesus for letting him make it!!! Please let him make it up those steps every time....please
Well the doctor sent him across the hall for his Doppler. Of course he has blood clots in his artery from his groin to his knee (right). I could see it on the screen...nothing..where there should be something! I hate that for him..He had clots 3 yrs ago and they cause us BOTH pain. I had to give him injections daily and put those damn tight stockings on him! (its so much easier to get stockings on a man who is not deathly sick! and can help!!!) Tony was diagnosed 3 yrs ago with blood clotting mutation called "Lupus anticoagulant" AND "Factor V Leiden" both of these mutations cause thrombosis. So we knew that this might be an issue BUT it still hurts! I have to give Tony Lovenox injections in his belly twice a day now...ughhh and He has to wear those damn stockings again. I have to comment real quick about how AWESOME everyone is at Tonys oncologist office! Dr. O is just awesome, her PA Patty and her nurse Amanda are just A*M*A*Z*I*N*G! They are all so helpful, and caring and funny! (Tony laughed seeing Patty and Amanda and Angela climb on the sink trying to reach something on the top shelf today!)
He is feeling much better today, his blood counts are getting closer to normal now. He said he feels like he has the flu today and is just tired! Rick and Jenny our best friends came today and OMG they always cheer us up! He is looking forward to friends from work visiting tomorrow and maybe Thurs. He WANTED to go to a dirt race Friday...Ummmmmmm that is NOT gonna happen if I have to tie him up! dirt in lungs and hard bench on blood clotted legs???? nope! The doc said Tony will for sure start his second round Sunday and they will continue his Lovenox shots while he is in the hospital. OH and Thank you Jesus for making Tony NOT grumpy today...he actually said thank you and sorry for being grumpy! AND he called me his angel...awwwwwww I love you Tony...everything is going to be as God planned. And I will always be your Angel...Always. That is what I'm here for.....

First day home

Well We came home yesterday afternoon. Tony was feeling pretty good. He really WANTED to feel good. But last night his legs started hurting pretty bad. He had very very bad Deep Vein Thrombosis the last time he had cancer, his legs cause him alot of pain on occasion when he does too much or doesn't drink enough water. He was in SEVERE pain last night. I found his stockings from the last time and put them on him, gave him an aspirin and some OJ. WOW then he started getting very bloated and sick feeling and his chest was burning. I gave him some pepto. Needless to say it was a rough night, neither of us slept well. He woke up today and had a horrible headache and started coughing, his lungs haven't sounded clear during his last few days in the hospital. THEN he got very grumpy. Of course..men do that when they hurt. I turned his phone on silent because it rings and beeps ALOT and wakes him up, he doesn't want to miss anything or anyone so he keeps turning it back on. He really isn't in pain as LONG as he is sleeping...wow... I hope everyone understands that right now...it breaks my heart when he wakes up and starts coughing and feeling bad again. OR worse, gets grumpy! Feel free to call me please 505-5557 or even better..text me)I went and picked up his meds today and went to the grocery for a few things AND stopped at the Vet. to get Roxy some meds. (Fleas..ughhh) Well after I gave Roxy a flea bath I vacuumed...ummmmm NOT the best thing for Tonys cough...ughhh now I feel like shit! His cough SEEMS worse..I don't know. He is eating, he had lasagna and green beans and is trying to go back to sleep now....that's all for today...wow I need some sleep...night night (this blog is to keep everyone up to date...I'm kinda out of energy right now!)

No More IL-2 for now.....Sunday 8-1

Well Tony has had enough IL-2 for now, his body cannot handle anymore. We will go back to the hospital again This Sunday 8-8 and do this whole process again. The doc said that everything will be different next time. We will see...like I said before..My husband is a bad ass....so bring it on! Sat night we were waiting to go back to the oncology floor, they had a room (they said) and then they didn't. UGHHHHHH so we had to stay in ICU again for the last night. I had everything all packed and ready to go...we were both just so ready for peace and quiet! So after I pouted for a while, I helped Tony shower and get all refreshed. Straightened his bed. Ordered some food. And had the nurse come in to hook him back up to everything...she said she didn't need to hook him back up...yaaaaay! FINALLY Tony could sleep on his side and stomach and not have tubes and pressure cuffs and monitors hooked up everywhere! That also means the monitors will not be beeping and alarming all night. We had a really great nurse that brought me in some cookies, chips and soda. She explained that for the next 4 to 5 weeks Tony should be very careful with germs. Everyone he is in contact with should be careful and use germ x, People that he should avoid is anyone that has had a vaccine in the past month, who is around alot of small children , or anyone who isn't feeling well or sick (even a cold). His immune system is not working correctly right now because of his blood counts dropping and all the IL-2. His counts will continue to drop this week, and he has to be extra cautious. He is supposed to flush the toilet a couple times when he uses it and he cannot get any fluids on him or me..(he is toxic)
I know some peeps read my facebook posts last week about Tony wanting me to work through all of this and I was getting mad lol...ummmm he has told me several times this week "Thank you so much for being here with me and I needed you" (I told you so..will not be said..outloud! lol) Tony was thinking about our bills and checking account..."I" was thinking about the man I love more than anything......THAT is what is important.....
We came home today (THANK YOU JESUS!) We are both sooo happy to be home! Toni and Russ and Sierra brought us lunch today and picked the garden (danke!) and Thanks Toni for cleaning the bathrooms! Now all I can think about is sleep....but sleep and Tony is all that I HAVE to think about now! Tony is feeling ok, NOT great but ok...he is very very tired and is still swollen. His feet and legs are hurting him and I'm making him keep them elevated. He has skin peeling in and around his ears and face and has a headache. This is all from the IL-2 and will go away in time. The doctor said he should start feeling good by Friday...just in time to do it all again. ughhhh
He has another week of IL-2 starting 8-8, then the following week he has a CAT scan. If the scan shows that the tumor is shrinking or is the same....then they will do all this again. 1 week of IL-2 and 1 week off then 1 week on and 1 week off. A total of 4 weeks inpatient IL-2 treatments. Tony had a very rough week and I hope he can recover and rest and have an awesome week here at home and pretend that things are normal for a while! I need a little normal! He does too! Normal for us is walking to the pond, doing a little fishing, checking the garden, cooking, watching some late night tv together and eating nachos in bed. Playing some cards with our best buds Rick and Jenny or just sitting around talking and laughing..we laugh aLOT....THAT is our life....I want it back! Tony has a Dr. appt Tues just for a follow up....goodnight all and Thank You for all the prayers....Thanks you Jesus for IL-2 and the possibilities.....