Teri and Tony! Oh yeah..and Kidney Cancer

I am writing this about my husband Tony, he doesn't type too much lol. He is just an awesome man and I think everyone should know. I would like more RCC patients to be aware of HD IL-2...so if you have metastatic disease, please read.
I met Tony at Ford Motor company, where we both work. I asked him out on a date, I later found out that he was "supposed" to ask me out weeks before but never could work up the nerve. We started dating and just had a lot of fun together. Our first date was at a club with some friends of mine. I bought him a drink. I didn't realize that he had been cutting back and had been a very heavy drinker. I found out later just how heavy a drinker he was....I had no idea. Gradually throughout our dating he drank more and more. One day I came home and he had drank a big bottle of wine (the double size bottle), and was grumpy grumpy grumpy. I told him that I was NOT going to be one of "those" women and if he didn't stop drinking NOW, he needed to move out and find another girlfriend. Tony drank the rest of the night and then did the unthinkable...he then checked himself into rehab the next day. That was 12 years ago. He hasn't drank since. Not one drink. We were married Dec 11,1999. I tell you that little story to show you what a strong man he is, what a fighter he is and what he would do for me. I love him more because of that.
Move ahead to December 2006, Tony had a few days every month where he would just feel bad and get a high fever. But some sleep and ibuprofen would make him feel better. One day he went to the bathroom and his urine was a dark rusty color. Just once. He went to the doctor and the urine sample had no blood. They of course didn't do anything except send him home. He was having back pain for the next 5 months. They did an MRI and it showed a herniated disc in his lower back. He was going to a homeopathic doctor that was doing deep massage, Reiki, etc for his pain. They never suspected cancer. One day he had a headache, NOT just a normal headache but a pain so bad in his head that he could NOT stand it. He was in a fetal position on the couch with a pillow over his head begging for it to stop. I made him take a Vicodin (he won't take pain killers since he stopped drinking, they make him very moody) The headache eventually subsided. This same week I bought him Lance Armstrong's book "It's not about the bike: My journey back to life". I don't know why I bought it...CANCER was NOT in my mind at all. It is an awesome book..it helped me a lot. Lance also has this excruciating headache.
At the time I was working with some people that know Tony, friends of his were always asking about him. I starting telling them that he hasn't been feeling well, that his back and legs hurt. One day me and my friend Matt were talking about Tony since he had just stopped in my lab the day before. He said Tony didn't look too good. I told him that Tony has BEEN looking bad, he looked thin and gray and had dark circles under his eyes....I said "Tony looks like he is dying".......I will never forget that I said said THAT. This too shall pass...I thought.
THAT day after work I went home and Tony called me and asked me to come get him from the doctors office, he said his legs hurt so bad he could hardly walk and he didn't think he could drive. He said "I feel like I've been running up stairs ALL day long". I brought him home, gave him some meds and a soft drink and had him change and get comfy. I went outside to stain the outside of the hot tub since I was having a BIG graduation party for Tori, my oldest daughter in June. Right as I started to open the can of stain Tony came outside and pulled his sweats up and asked me if THAT was normal. I said NOPE. His right knee was swollen and you could see TONS of dark purple blood vessels sticking out of the side of his knee and thigh, it looked like a map. I went in a got a measuring tape. His right knee was almost 2 inches bigger then the left. I said "Ohhhhh I think you have a blood clot..come on baby, lets go to the ER". He said "NO, I just laid down and I'm comfy". We argued about it for a few minutes. ughhhhh I didn't know what to do, I HATE to go to the hospital for nothing, you know what I mean?? go and wait and wait only to get sent home because there is really nothing wrong. I called my friend Karin, in Switzerland. (She used to live here, and we're great friends) She works in the therapy, medical field and I told her about Tony's knee and veins. She said "Teri..you must take him now or call the ambulance!!" SO I told Tony "either you come WITH me or I'm calling 911 and then you WILL feel silly IF it's "just nothing".
The hospital immediately put him in a wheelchair and did some blood work. It was a LONG wait. They admitted him. May 10, 2007. They came in and told us he was anemic, which they said was weird..men aren't usually anemic. They gave him some pain meds and were waiting til morning for a doctor. I told the nurse to have the doctor call me. Tony's leg was WAY bigger now and he was looking worse. Like he was dehydrated and starving to death. The doctor called, I told him that Tony needed some nutrition or fluid or something. "you can't just let him lay here and die". They went ahead and started IV fluids. They did more blood work the next day and Doppler's and ultrasounds. His leg was HUGE. It was so huge he had to drag it when he walked. They eventually wouldn't let him get out of bed at all for fear that the clots would go to his lungs or brain. I watched as they did the ultrasound. I could see that the blood was NOT pumping in his thigh or groin. The tech was nervous as she was moving the probe higher up into his groin and still wasn't seeing any blood flow. That is when they sent him for a CT scan. Hours later, Tony was sitting up in his bed eating and we were laughing about something when the doctor came in. He asked me if I minded stepping out of the room with him. This too shall pass...this too shall pass I kept thinking. I looked at Tony and he just shrugged I think and kept eating his lunch. We walked out of the room and he wanted me to follow him to THE little room where doctors talk to families. Where doctors tell families BAD news. I did NOT want to go in that room with him. I didn't want to hear what he was going to tell me. A MILLION things went through my mind when I was following that doctor down the hall. "Tony's going to die, they are going to amputate his leg, why don't the doctor talk to BOTH of us? He's going to die?, He's going to DIE" I sat down and the doctor was very nice but he looked nervous. All I remember is He said " your husband has a very large mass in his kidney.....pause.....it's cancer". Ummmmmm I don't really know what else he said...something about Kidney Cancer survival blurrrrrr.....My brain stopped working. We walked into Tony's room, I was BAWLING and of course Tony knew...something was wrong. I will always remember that Tony was just sitting there eating and looking pretty happy. We walked in and had to tell him... that The world as we know it is about to change. The doctor told him. He took it better than I did. I know Tony's nervous look and he had it! I hated it for him...for me. This too shall pass????? I hugged him so tight. I just wanted to keep hugging and never let go. A urologist that performed MY kidney stone surgery a year before came in and said they were transporting Tony to University of Cincinnati medical center.
They couldn't do the surgery right away, they had to get his leg smaller and his blood flowing. The doctors told us his tumor was so big that it was growing out of his kidney into his vena cava vein and causing a dam, his blood couldn't flow into his leg and now his leg has huge blood clots. He was diagnosed with Deep vein Thrombosis, and also some blood clotting disorders, "Prothrombin Mutation" and "Factor V Leiden". He will always have DVT problems in his legs and still has to be careful. His surgery was May 18,2007. An oncology surgeon and a vascular surgeon performed the surgery. It was about a 7 hour surgery. A radical nephrectomy. They also put in a filter to prevent blood clots from going into his lungs or brain. They stated that his cancer was "clear cell, pT3b". Stage III. His primary tumor was 11x9x5cm in the lower pole with lesions in the mid and upper poles. The tumor extended into the renal vein and muscle branches and vena cava below the diaphragm. He woke up from surgery wanting to die. He begged me to unplug his machines. He begged for more pain killers. I couldn't stand to see him like this. I cried a lot. I have 2 children, he has 3. They were there. This was so hard for our kids. They were 15, 16, 17, 18 and 19 years old. His daughters came up from Tenn. Everything was tough, this was such a hard time for all of us. I still don't even know if there was an adult at our house while we were in the hospital, I just don't remember. Everything was just a blur. He developed an infection in his incision, they had to open it back up and put a "wound vac" on, he had to wear compression stockings for his legs. I blocked some of that from my memory so I can't tell you some things. I do that when bad things happen. It's easier for me that way! He was in the hospital a long time. He was discharged May 30,2007. I had our friends pick up ans set up the tent and tables for Tori's graduation party that was scheduled for the Sat. after Tony's discharge. I paid someone to take care of our lawn. My sister helped a LOT! I remember just crying my eyes out because I needed to pull the weeds from my awesome garden around the pool and hot tub and couldn't leave Tony and didn't have the energy if I could. My sister came to pull them, she laughed because she said there were only like 4 weeds in my whole yard. I was just overwhelmed. This too shall pass? She helped..a lot. The party was a hit! Tony walked outside and said Hi to everyone and all of my family and friends were so glad to see him. But he stayed on the couch for weeks and weeks. He was having horrendous leg cramps EVERY night because of the damage the Deep Vein Thrombosis did to him. It was terrible. Putting those TIGHT compression stockings on him hurt his swollen leg and just made me cry! Will this EVER pass?? I was off of work without any paycheck and Tony was on medical leave. Needless to say our savings account dwindled down to zero! But we had each other. Some family and friends helped some. Thank God for our retirement savings plan that we had both had always invested in...or we would have lost everything! This too shall pass...and why worry about our retirement if we need it to survive now...right?
I had to "pack" his incision with gauze and clean it twice a day. This wasn't a regular incision, it was a huge gaping hole in his abdomen. It took everything I had to clean and dress that daily and give him Fragmin injections twice a day. I put those DAMN tight stockings on him because if I didn't they would cramp so bad and he would grab his legs in pain. This went on for over a year! He still wears them on occasion because of blood clots and cramping. He was starting to recover. Maybe a couple months after he noticed a bug bite was bothering him, right where his waistband on his jeans sit. After him complaining a couple days about this I looked at it....ummmm this wasn't a bug bite. It was dark purple and hard. It was maybe 2 inches in diameter and felt hard...like bone. But it was in his belly. I took him back to the hospital, they sent us back to the University of Cincinnati medical center and had a room waiting for us when we arrived. He had MRSA. He was in the hospital for another week. They gave him some strong antibiotics and I again had to "pack" this deep hole in his belly twice a day. I thought I couldn't do it. It was deep and not appealing to look at...let alone dig in. But I will do anything for Tony. I'm amazed at how WE become so strong when we don't have any other choice. This too shall pass. Tony was getting tired of hospitals and I just wanted "normal". I went through some deep depression for a little bit. It was now that I sat back and realized everything that just happened, everything hit me like a ton of bricks. I was so strong for 3 or 4 months and NOW I didn't want to be...now I wanted to rest and breathe. I cried a lot.
They were going to put him in a clinical study but his heart wasn't beating normal, he was still too weak, so they wouldn't approve him. He then had scans every 3 months for 1 year and then every 4 months for a year. Then every 6 months.
EVERYTHING was great for 3 years.
Tony wanted a house in the country with trees and a pond. We sold our home with the awesome landscaping and pool. We bought the house in the country and Tony a big shiny tractor! Whatever Tony wants really...I don't care, I am with him. We went to Europe in December (2007)and spent Christmas in Switzerland with our friends. We had plane tickets for June 2007 but Tony was in NO shape! All of our kids graduated from high school. Ashley our oldest daughter got married. Had our only grand baby, Carter. Our life was perfect. We were happy. We tried not to think too much about cancer for 3 years. We did fun things together. We always have fun together! June of 2010 I was having some heart issues and having some tests done. Tony was going to get his CT report from his oncologist alone. We both had appts this day. Tony called me while I was waiting to get my CT scan. He told me he had another tumor, his left Adrenal gland. WHAT??????
I cried all the way home. No no no no no no! We both stayed home from work that day. Tony tilled his beloved garden, I sat out there with him next to the pond and we just talked. Talked about a lot of things. It is what it is...and we will take care of it! This too shall pass. The next doctor appt. his Oncologist Dr.O said she wants him to try High dose interluekin. HD IL-2. She told us there is a 10% chance this could cure him and a 25% chance that it will shrink his tumor and slow the progression. She also told us this IS the only FDA approved cure for kidney cancer. She told us about all of the side effects. Low blood pressure, he wouldn't be able to urinate much, he would get rigors, nausea, flu like, itching skin, etc etc. The side effects are numerous AND severe. BUT the side effects are reversible AND they have meds to treat almost ALL of them. She said he would be in ICU for most of the treatments. We thought for a minute, EVERYTHING else they give you for RCC just slows the progression...it doesn't cure it....well we want him to be CURED. I don't want him to just live 2 years LONGER, I want him for 50 MORE years. OK sign us up! We didn't talk about with anyone we just said OK. We didn't even really think about it, just looked at each other and said ok. As far as we were concerned what was there to talk about?? When do we start. They set up the day to enter the hospital for a few weeks away. Dr.O explained he would have 1 round of HD IL-2, which consisted of 1 week in the hospital 1 home recovering. 1 more week in the hospital and then home to recover. Then rest for 8 weeks and have a scan. Then if the tumor shrinks or stays the same. Do it again. 1 week in and 1 out, another week in and then out.
I made arrangements with Tony's daughters, Ashley and Meg, they house sat and watched our dog Roxy for the first week, my daughter Tori house sat the remaining 3 weeks. Tony's son Anthony cut grass and friends and my sister and her family picked our garden several times and helped with things around our home.
We went to the hospital the end of July 2010. He was admitted on a Sunday. They didn't give him his first dose until Monday about 2 pm. I had planned on going home that night. He started having rigors and feeling very bad about 3 hours later. He told me he really wanted me to stay. I stayed. I never left. Ever. I stayed the whole 4 weeks that he was inpatient. Even sleeping in chairs. I had to. The nurses were NOT there with him when he started the rigors so bad. I had to make sure they had Demerol on the floor and would answer my calls asap when he was shaking so bad. I was there when he needed his pan to vomit in. When he needed unhooked from all of the monitors NOW and RIGHT now because he had to go to the bathroom. I was there to change the sheets and cry myself to sleep at night just waiting to help when he cries out in pain or when he needed his 9 blankets back on or peeled off one at a time. I was there when he couldn't make it to the bathroom in time. Nurses just are not there for IL-2 patients...not how a VERY patient spouse is. I was there to make him eat his 3 bites of "cream of potato" soup a day because he was losing so much weight and they wouldn't give him any more IL-2 if he was losing too much..and he needed his IL-2 so I could keep my husband! Several times I looked up in the middle of the night and his blood pressure was 47/26 or something INSANE like that. I would wake him or sit him up to get it higher. I did everything I could to prepare him so they would give him his next dose. Because if things didn't look good they would skip the dose. No matter how bad he felt he never wanted them to skip the dose. I didn't either..within reason. The dosing was every 8 hrs. They would give it to him, and within a few hours all hell would break loose. One night he itched so bad I laid icy cold cloths on him and they gave him as much itching meds as they could give him. And as much sleeping meds too. He was miserable, I sat there on the side of his bed and cried and cried and ask God to give ME his pain and itching just so he could rest. I pleaded with God. I held my hand on his head and just sobbed and prayed and begged and pleaded with God. One night he was having rigors so bad and the nurse said they couldn't give him any MORE Demerol (the only thing that works) She said the Dr. said NO. I took a deep breathe, I tried to sound calm, I had the heat light on directly over his bed, they have them in ICU, I had 9 blankets on Tony, a dry wash cloth on his face to block the blinding light, I was sweating, It was so hot in there. I was laying my upper body over him to keep him from shaking so hard and to keep him warm. I put my sweatshirt over him too, I just had on a thin T shirt now. Tony was shaking and freezing and hurting so bad from biting down and convulsing so hard...I took a deep breath and said as nicely as I could with tears streaming all over my face and red puffy eyes, and I said very slowly "CALL THE DOCTOR BACK AGAIN AND TELL HIM TO COME DOWN HERE AND SIT WITH ME AND WATCH MY HUSBAND BEG FOR MERCY" "PLEASE"....She came back in with more Demerol.
He had convulsed or shook so bad that he couldn't move his arms for a week afterwards. His shoulders were so sore.
Another time I believe his 2nd week they didn't have Demerol on the floor. WHAT???? So after they finally got it, after Tony finally had relief and fell asleep I walked into the hallway with the nurse supervisor and told her that this is the 2nd week we are here and we will have 2 MORE weeks, I said "order some Demerol NOW and do NOT let that happen again, EVER, keep it on the floor, keep it in your pocket, JUST HAVE IT!" They started keeping it in the room or in their pockets as soon as the IL-2 was administered. He is allergic to Dopamine, a med to raise his blood pressure. I thought he was going to have a heart attack or something after they administered it. Thank God it stopped after a while. I really can't talk a lot more about the IL-2 experience because I have this ability to block bad memories out of my head. I wrote on my blog daily about this experience...if anyone wants to read the daily blog here you go www.terilynng.blogspot.com I can't read that either, it hurts me. I started to once and I cried and was depressed for a few days. It really was a horrendous experience for both of us.
The medication was unreal, I had to keep a written diary of what he took, at what time for pain, nausea, sleep, diarhea, constipation, itching etc. Then I kept one of the meds that were needed at certain times. He had no idea what he was taking...thank God I stayed home from work for quite a while.
Tony's tumor was smaller after the first round of IL-2. He developed another blood clot in his leg after the first week of IL-2 and has to be on Fragmin injections again. Probably for the next 6 months. We held our breaths and finally could breathe some. After the last IL-2 dose Tony felt very bad. He had a total of 32 doses. He had 12 the first week, 9 the second week. 6 the next week and 5 the last week. Tony was recovering nicely during the wait for the next CT scan. Something happened with his skin in Dec 2010. He started itching so bad. So bad that he put Ace bandages around his knees so his jeans wouldn't rub the back of them...they were raw. I did all kinds of research and read that Adrenal disfunction can cause eczema, vit C deficiency does too. I tried Aveeno baths, Epsom salt, vinegar etc etc. I made him drink orange juice and soak in a tepid vinegar bath. They said he should not use steroids or hydrocortizone on IL-2 patients as it reverses the effectiveness of the IL-2. Christmas eve..ughhhh one of the worst days of my life. Tony was itching so bad I wasn't sure if he was going to be able to survive. YES it WAS THAT bad! It was so bad, he was digging, and bleeding from the severe scratching because of the blood thinner "Fragmin" that he is still on. He was miserable! Yelling and crying and just in excruciating pain..all over his body. I was giving him the highest dose of Hydroxyzine, the dose they give to sedate people. I finally put some 1% cortisone on him. I mean...I had to do something...life was unbearable. UNBEARABLE! He finally fell asleep and I just prayed that he could sleep and STAY asleep. I asked God how much more he was going to give us because this was as much as we could handle. I cried myself to sleep. We woke up on Christmas and did that same routine with the juice and bath or Cervase lotion, a little cortizone and Tony was finally feeling like he could function. He is still itchy now 1-6-2011. BUT it is not all over his body. I think his knees were infected. We do NOT use the hydrocortizone cream anymore. BUT like I said...we had to do SOMETHING!
The latest CT shows the tumor has shrunk so much they no longer even call it that. They call it an Adenoma, it is on his left adrenal glad. They will remove his gland the end of this month or early march. Then they will do scans every 3 months. But right now...they do NOT see anything. Thank you Jesus for IL-2 and being here when we needed you the most! NO ONE can understand what our last 6 months have been like unless they lived here or went through it themselves. Our lives were a living hell....but 6 months of hell for a chance at a lifetime of being NED seems worth it to us.
This whole journey with Tony has made me realize how precious life is. I don't want life to pass me by, I want to live and have no regrets, I want to do what makes me happy and live in the now. You never really know if tomorrow is going to come. So do something wonderful today. Make someone smile and make yourself smile while you're at it. I love Tony with all of my heart. Sometimes I might not want to go for that drive or that walk in the woods but then I realize that I NEED to, I don't know if tomorrow will be here...so I go. And I smile and hold Tony's hand. Thank you Jesus for not taking Tony just yet, we still have a LOT of living to do.