January 18, 2000
My Story begins back in April of 1998. I volunteered to leave my job of 10 years as a Labor Relations Manager to stay home and raise my 1½ year old daughter, Casey. This was supposed to be the happiest time of my life. I was thrilled to be fortunate enough to make this decision. My husband and I had a wonderful life. We have a beautiful home and a lot of great neighbors. We probably have the type of life that everyone envies. I was ready for my new life to begin as a stay at home mom.
Before I begin I have to preface that my daughter Casey is a beautiful, blonde-haired, brown eyed, WILD, little girl. She is one of the big joys in my life and I wouldn't change her for anything but she is a little wild.
In May of 1998 my husband, Kurt, and Casey were on the floor wrestling around. They were having a great time. Casey was on top of Kurt and he was throwing her up in the air. All of a sudden Kurt yelled out in pain. I asked him what was the matter and he said that Casey had just accidentally kicked him in his groin area and that it hurt really badly. A few days later his testicle swelled up really large and it was painful.
I told Kurt that he should probably go to the doctor to have it looked at. He wouldn't go. He said that he use to play football and wrestle when he was younger and that he was hit in his groin area before and that his testicle would go back down. I think he was embarrassed to have a doctor look at that area of his body. This went on for a couple of months. In June 1998 we were spending a week at the beach. Kurt's testicle really started to ache. Probably because I made him carry so much stuff back and forth to the beach. Anyway, with a lot of persuasion Kurt finally decided to have the testicle looked at.
Our urologist told Kurt that it was a hydrocele resulting from the injury. There was a one percent chance that it was a tumor, but not likely. The urologist was going to drain Kurt's testicle and repair it if necessary, and if he couldn't repair the testicle, he would have to remove it. Kurt was really scared to death that he was going to lose his testicle. I just tried to be supportive to him.
The surgery was scheduled on July 11, 1998. It was a short surgery and I was waiting all alone, but what the doctor came out to tell me drastically changed our lives. He told me that it was a tumor and that Kurt needed further testing. I almost passed out when the doctor told me. I began to shake uncontrollably. I was scared to death. What was I going to say to my husband?
The next day our suspicions were validated. The pathology reports came back and indeed Kurt had testicular cancer. What in the world was testicular cancer? I had never heard of it. Our doctor said that Kurt needed to have a cat-scan, blood work and a major operation to see if the cancer spread to his lymph nodes. I was scared to death. Leaving the hospital that day I couldn't get the thought out of my head that I would never have any more children. You can conceive children with one testicle, but I knew that chemotherapy makes you sterile. My husband and I were both very scared. I think that sometimes the unknown scares you more than the known.
That night I went home and began reading on the internet about testicular cancer. I found out that if it was found early enough that it was a very curable disease. At the time I didn't realize how extreme my husband's case was. The information I read said that only 7000 cases are diagnosed every year in the United States and that it usually effects men between the ages of 15 and 35. Most likely you won't find any old men with this type of cancer. This happened before the Lance Armstrong stories came out. Why hadn't I ever heard of this before? Women are always taught how to examine their breasts for breast cancer. Why doesn't anyone teach young men how to examine themselves for testicular cancer? I guess testicles are an area of the body that many men don't want to talk about.
A week after my husband came home from the hospital a wonderful thing happened. I was late for my period. I took a home pregnancy test and it came back positive. I was shocked. I could hardly wait to tell my husband. We were both thrilled. What a blessing. There was a God. I knew that the next 9 months were going to be hard, but I think I needed that baby to keep my mind off our troubles.
On September 3, 1998 Kurt was scheduled for the surgery to check to see if the cancer spread to his lymph nodes. The surgery required a foot long incision down his belly and he needed to stay in the hospital for a week to 10 days. The day of the surgery my mother watched Casey and my dad was with me. The surgery lasted a few hours. It seemed like the longest day of my life. Finally, I got a chance to see Kurt. He looked awful. There were so many tubes in him. I was just as scared as he was, but I promised myself that I wouldn't cry in front of him or my daughter. I had to be the cheerleader and keep everybody happy. The only person I really cried in front of was my mom. I really let it rip around her.
The next week progressed pretty good and every day they took another tube out of him. He was looking and feeling better. The doctor told us that his lymph nodes were clear and that he wouldn't require chemotherapy. We were so excited. I called everyone I knew. We were going to get our life back on schedule.
Kurt needed to recuperate for about 6 weeks before he could go back to work. Kurt is actually a sergeant for the New Jersey Department of Corrections. We decided to relax and enjoy some much needed time together as a family.
Our urologist said that now he just needed to keep an eye on Kurt. Every month he needed blood work and a chest x-ray and a cat-scan every 3 months. Okay, we could handle that.
On October 6, 1998, Kurt and his friend decided to take his motor home and go to Syracuse, New York, for a few days to watch the stock car races. I told him to go and enjoy himself before he went back to work. He needed to get away for a few days. They left in the afternoon. That night around 8:00 PM I received a call from his friend telling me that the furnace in Kurt's motor home flashed back at Kurt and that Kurt was burned and he was on his way to the hospital. I just flipped out. Casey was on the couch drinking her milk before bed and I began to shake uncontrollably. I actually just got on my knees and prayed that he would be okay. October 6th was the day that my grandmother had died. I waited for the hospital to call me because I didn't even know what hospital they took Kurt to. Syracuse, NY, is about 3½ hours from my home. I didn't even know how to get there. About two hours later the doctor called me and told me that Kurt was okay and told me how to get to Syracuse.
I called Kurt's father and he took me to Syracuse. When I saw Kurt, I couldn't believe my eyes. The only burns that he received were on his hands and face. His face was swollen twice its size, but the doctor assured me that his face would be okay because it was only second degree burns. His hands were worse and required skin graphed surgery.
Kurt's hands were wrapped for quite a while. He couldn't use them. During the day, I had to do everything around the house, clean Kurt's burns, feed everyone and give baths to both Casey and Kurt at night. My days seemed to last forever. I was still in the beginning stages of my pregnancy, and I was absolutely exhausted, but I wasn't going to give up. Both Kurt and I figured that if we could beat cancer, what were a few burns. We could handle that. Poor Kurt never even had an opportunity to go back to work from the lymph node operation. He was out on disability again for a few more weeks.
Kurt finally did go back to work right before Thanksgiving 1998. That same week he had to go to our urologist for his routine chest x-ray and blood work. Kurt was sleeping during the day since he works nights and his urologist's office called and said that they wanted Kurt to go for another cat-scan. A spot had shown up on his lung on the chest x-ray. Our worst fear happened. The cancer was back and it spread to his lung. We were just so happy the day before this phone call. We were out shopping at antique stores with my parents. Kurt bought me an antique fireplace mantel for Christmas. My Dad was going to refinish it for us.
We were immediately sent to an oncologist and the next week Kurt began chemotherapy. A very strong type of chemotherapy. Kurt's chemotherapy sessions lasted from November 1998 to February 1999. My parents would baby sit Casey and I would take Kurt to his sessions. The sessions would last for hours. Kurt and I would watch movies. We watched so many movies. Kurt was extremely sick. I am not kidding. After a weeks session, he would throw up for 10 days straight. These seemed like the hardest months of my life. Be we still thought that it was a small price to pay to have the opportunity to spend the rest of our lives together. We were still looking forward to our new baby being born in March. The baby and Casey kept us focused. Through all of this, my Dad did finish my fireplace mantel. It truly is spectacular.
It was now February and the chemotherapy was finally complete. It was time for me to get the nursery ready for the new baby. I did it. I think in record time. Now the big decision. Should Kurt have the spot on his lung removed or not. We were told by our doctors that on the cat-scans after the chemo, there was still a tiny spot there, but most likely it was scar tissue. We would have to keep an eye on it.
Abby Marie was finally born on March 22, 1999 at 10:19 AM. She is absolutely beautiful. It was a really short labor for me. I was only at the hospital for about an hour and a half before I had her. Kurt and my parents were with me. There wasn't even time for an epidural. Although it was short, believe me, I felt everything. There was not time for me to relax. Two stitches and two nights later, I was sent home. I hardly have any pictures of Kurt and Abby. He didn't want his picture taken since he still didn't have any hair. Once again, we were thrilled. My husband was most likely cured and we now have two beautiful girls.
We brought Abby home and I wasn't quite sure what to do with her. She never cried. Casey was colicky and cried constantly. Abby truly was an angel. When she looked up at me it was as if she was telling me not to worry about anything in the world.
I enjoyed the nighttime feeding so much. They were so peaceful for me. I guess mostly because I knew that this was my last baby and that I would never have an opportunity to do this again. I was going to cherish every moment with her. But before long, Abby was sleeping through the night.
Around April 1999 we decided to get a second opinions about what to do with the spot on Kurt's lung. Some doctors thought that it was just scar tissue and some thought that it was still the tumor. We didn't know whom to believe. We waited.
In May 1999 another cat-scan showed that the spot on the lung looked like it was growing again. This had to mean that the chemotherapy that Kurt suffered through didn't work. What now? Immediately we scheduled the surgery to have the spot in the lung removed. The surgery was scheduled for May 10, 1999. Abby was only five weeks old. How was I going to contend with this surgery. Now I have two children to worry about.
Another surgery. How was I going to make it through this? This surgery like the others, seemed to last forever. I think this time I was even more scared than the others. The tumor was removed along with the surrounding portion of his lung. The surgeon came out to see me after the surgery was over and told me that it looked like it was definitely cancerous and not scar tissue.
After Kurt's surgery he knew everything that he needed to do to move toward his recovery. He was really becoming a pro at this. I basically spent my time running back and forth between the hospital and home. It was such a hard time for me. My girls desperately needed me and so did Kurt. I remember feeling so torn. My parents basically camped out at my house. Thank God for them. I must have said that a million times that I would never have gotten through this terrible ordeal without them. When I would return from the hospital I would spend some time with the girls, give them their baths and put them to bet. I was trying so hard to be the perfect wife and the perfect mother. I guess I have learned through this that you can't be perfect at everything.
Kurt spent about a week in the hospital. The day that he was supposed to come home he came down with a fever and a touch of pneumonia. He had to stay a few more days. He was heartbroken. He wanted to come home with me so bad. I wanted him home to, but I knew in my heart that it wasn't going to be bed of roses when he did come home. How was I going to manage taking care of him and the girls too?
Kurt was finally ready to come home, but before we left our oncologist informed us that Kurt would need further treatment. He felt that the initial chemo that Kurt had wasn't very effective on Kurt.
About a week later our oncologist called to tell us that he wanted us to go to Temple University to talk to the director of the Bone Marrow Transplant Program. We were devastated. I thought that only people who were going to die received bone marrow transplants.
We scheduled our appointment at Temple for May 26th. We also scheduled an appointment at Sloan Kettering in New York City on May 27th for a second opinion. We weren't wasting anytime this time. Sloan treats probably the second most number of testicular cancer patients a year in the United States next to Indiana University. Our insurance company wanted us to use Indiana instead of Sloan, but Sloan was only 2 hours from our house.
On May 26th we were off to Temple University. We met with the director. He was a wonderful man and probably one of the nicest doctors I have ever met. I truly mean that. We were actually talking about stem cell transplants. Stem cell transplants is basically the new word for bone marrow transplants. This doctor felt that he would be happy to treat Kurt, but he felt that Kurt belonged at Sloan since they treat more testicular cancer patients that Temple does.
I think I cried the entire time I was at Temple. I really couldn't talk without crying. So many women talk about the post partum part after you have a baby. I think I had the post partum bomb.
On our way home I picked up my cell phone to call my house to inform my parents that we were on our way home. One of my cousins answered my phone. I asked him in a kidding manner what he was doing at my house. He said that he just stopped there on his way home from work. I knew something was wrong. I said you tell me right now what is wrong. He said your kids are fine, but your mom took your dad to the hospital. He had indigestion. I told her to tell him to go to the doctor, but he wouldn't. There was no time. My parents spent every waking hour helping me. The guilt overwhelmed me.
We rushed home and immediately went to the hospital to be with my mom and dad. They were always there for us. This time it was there turn. That night they did a catherization and angioplasty on my dad. His doctor came out to tell us that he needed bypass surgery, but he needed to wait for his heart to strengthen. I remember thinking that night in bed that I was glad that my girls were too young to really feel bad for their daddy because I knew how much I was hurting about my dad.
On May 27th we went to Sloan Kettering for our consultation. They were anxious to begin the stem cell transplant on Kurt. Bur first another cat scan and blood work.
The cat scan showed that Kurt had three more spots on his lung. I think I was really losing it now. I couldn't even rely on my mom and dad this time. I didn't want to make them upset. We actually hid the new lung spots from my dad for a while. We didn't want to cause him any more stress. He didn't need that.
The Sloan doctors felt that the three new spots were okay. The cancer was spreading fast, but they felt that the stem cell transplant would be very effective. Kurt had a 50-50 change that the stem cell transplant would work. That was all we had now was a 50-50 chance.
A few days later I was visiting my dad and one of the surgeons came in. He said that they didn't want to do the bypass surgery on my dad because he had too much scar tissue in his heart. The scar tissue was basically from numerous silent heart attacks.
After another angioplasty operation my dad was sent home to recuperate. He goes to physical therapy weekly and he really looks great.
Now the big test. Kurt and I both knew that I couldn't be with him all the time in New York. Our girls needed one of their parents. I had to stay behind this time. Kurt's father chose to take a leave of absence from his job to stay with Kurt since the transplant would last months. What a tremendous favor he did for us. He allowed my girls to continue living a normal life.
Between June 1999 and October 1999 Kurt spent most of the time in the hospital. He was really only home for short periods of time. Every few weeks he had to be at Sloan for high dose chemo and the stem cell transplant. He had to stay at Sloan for about a week each time. After the transplant, he would come home and I have never seen anyone so sick in my life. Each time when he was home he would be so sick that he had to either return to Sloan or go to our local hospital because he was either completely dehydrated or he had an infection. I was a complete mess. I was so worried about Casey. She knew something was wrong. The baby was too young, but Casey knew.
I went to visit Kurt when I could, but mostly we talked on the phone several times a day or talked via email. I knew that he really wanted me with him. I was constantly with him up until now, but we basically knew that our girls needed me more. Believe me, it was a long summer.
On October 5th, Kurt returned from Sloan after his last stem cell transplant. We were thrilled. He was done, but he was once again extremely sick.
By Saturday, October 9th, he was once again back in the hospital with a really serious infection. They put him in ICU this time because his blood pressure was dropping and his pulse was rising and he had a fever of 105.9. We thought he was going into shock. I thought that he was never going to make it out of the hospital this time. The doctors told me to get to the hospital right away.
Believe it or not, Kurt started to progress quickly and he was soon getting better. He is young and that has a lot to do with how quickly you recover. He had just turned 34 on October 5th. I wasn't going to let him let me down. He had too much to live for. Everything was getting better for Kurt and we were both excited to get our life back on track.
On Monday, October 11th Kurt was still in the hospital and I received a call from my mom and dad. My mom had just been to the doctor herself complaining from months of back pain. My mom had a tumor on her spine. The doctors said that based on the location of the tumor, the cancer had to have started somewhere else in her body. I just about passed out. My mom was my backbone. She helped me stay alive over this past year. I needed her. Kurt was still sick in the hospital. I needed him and he couldn't even be there to help me. What was I going to do now?
We finally got through that awful week. I ran back and forth between hospitals taking care of my mom and my husband. Kurt was sent home to recover. He was finally done with his stem cell transplant. Now we just basically needed to sit back and wait to see if the stem cell transplant worked. From now on Kurt needed to report back to his doctors monthly for routine blood work and chest x-rays and cat scans.
My mom was sent home to begin radiation treatments and chemotherapy. Here we go again.
My mom continued with her treatments through October, November and December. On December 30th my mom was deathly ill and was admitted into the hospital where she remained until January 20, 2000. She was so sick and weak, but I thought in my heart that she would pull through it since Kurt did.
Christmas and New Years came and went. They are both very hard for me to remember. I thought that they would have been the happiest holidays since my husband was finally healthy, but they were so somber because my mom was so sick. I think we all just put up a big front for my daughters.
On January 20, 2000 my world completely came to and end. I lost my backbone. I lost the only person in the world who truly understood me and completely understood all the pain that I was going through. My mother passed away after a short bout with cancer. I miss her more that I could ever put into words. My mother was the only person in the world who continued to tell me that Kurt would be fine. Well, mothers truly do know everything. My husband has been cancer free for five months. What a blessing. I thank God everyday that he is strong and healthy. I only wish my mother were here to share with our triumph.
My sidekick through this entire ordeal was my cousin and best friend Ann Marie. Her daughter Alex and my Casey are only six weeks a part and they are the best of friends. She truly was my psychologist, on call baby sitter and best friend through our ordeal. She listed to me complain and cry for hours at end all the time. Friends really don't come any better that Ann Marie. I think that she is the only reason that I never had to take prozac.
It is now March 11th and on March 22nd my Abby will be a year old. What a traumatic first year of life my little Abby has had. It truly flew by. Someday when she is big I will have to tell her all about it. And my little Casey. She doesn't quite understand it all. She doesn't understand why her Daddy was gone so much and she truly misses her grandmother. She asks and enormous amount of questions. I just try to answer them as good as I can. Her questions make everything real for me. I love my daughters and their Daddy so much. I am really happy that we can finally move forward as a normal family.
Postscript: Now it is January 2001, and Kurt has been cancer free for 15 months!!! Thank God for modern medicine and the wonderful Doctors at Memorial Sloan Kettering. If anyone reading this is going thru the same thing, they are more then welcome to e-mail us with any questions they may have, we have basically been thru everything, and it is easier to ask someone who has been thru it!