My Story....... such as it is. So we have cancer. How do we feel about it? Will we survive it? What if we do? What if we don't? How will the treatments affect us? Where do we go to get treatment? Did these questions go through your mind when you were diagnosed? I hope so.
I was diagnosed with Testicular Cancer in October, 1995 at the age of 32. Today is February, 28th, 1998. I am not cured........yet. Here is my story. I am a mechanic by trade. In 1994, I started on my way selling a very popular tool, with big dreams of big money. Sorry to say, it didn't work out. I went broke instead. I returned home, a little overweight, and a little apprehensive about going back to my old job at the Ford dealership. Embarrassed? Not at all. Though not a "natural" mechanic, I was none the less good at what I did. Since I was a little pissed off at some of the things that happened before I left, I decided that, though I really wanted to return to work there, I would wait for them to call me. So I took a job making donuts in my Mother's store. Put on a few more pounds. After nine months on the job, I discovered that if my Mother and I were to remain friends, I had to get out of there. So I took a job in the Ford dealership in the next town over. Then the phone calls started.
"Hey Bob, come back to work." About two months into the job, I started having pain in my lower back. For the first week, I also had an abdominal pain that felt much like stomach flu, with out the other flu symptoms. Being a guy, and being a mechanic, I figured what ever it was, it'll go away in a few days if not sooner. I thought it strange that my back did not bother me at work, but only when I was home relaxing or sleeping.
During this time, I was steadily losing weight. Again, I was not concerned. After all, I had returned to a manual labor job, it was summer, and I wasn't eating donuts and fast food all the time. After about two weeks of back pain, I decided that I must've pulled something at work, but I really should have it looked at because I usually heal faster than that when I hurt myself. So off I went to my doctor. I told him about the back pain, and the weight loss, and the temporary abdominal pains in the beginning. After telling the circumstances, and why I thought I was losing weight, the Doc made the decision that I had pulled some back muscles at work. Since the abdominal pains had gone away, he was not too concerned about them. What if he had me lay back and pressed on my abdomen? It only takes a minute. Would he have felt the tumor growing there? Who knows. Doesn't matter now.
Anyway we went to work on the back pain with painkillers and muscle relaxers. He sent me on my way, advising me that if it wasn't cleared up in a week, he wanted me back in his office for another look. Well it didn't go away. Being a guy, I figured, what the hell, it'll clear up before too long. After a month of fitful sleep, I thought I had better get on back to the doc. Again, painkillers and muscle relaxers, a ct-scan of my spine (which showed nothing) and a little physical therapy. The pain continued. And so did the phone calls.
I finally worked out the best deal for salary and benefits that I thought I could, and returned to work at my original dealership. While filling out the health and disability application forms, I was required to sign a rider on the disability policy that anything regarding a back problem would not be covered. I did. And now I had a disability plan in effect that, being a guy, I figured I would never need.
So everything is going along fine now, I'm at work, I'm making pretty good money, and the extra weight has come off and plateaued at my normal body weight. Of course my mother thought something was wrong. Too much weight to lose in so short a time. And the back pain continued. Then one day I discovered that my abdominal muscles felt a little "tight". I would lay on the bed and try to stretch them a little. It didn't hurt, but it didn't feel right either. Being a guy, again, I didn't give it much thought. Then one day, I was laying there doing my little "stretch" and got to feeling and probing. I asked my wife to feel how tight my muscles felt. We both agreed that it was weird. Being a guy.......
Shortly after that is when it really happened, on a Thursday. I had been having abdominal pains all morning at work. Being a guy, I figured lunch would settle them down a little. Returning to work after lunch, I only felt worse, so I left for home. The guy thing again?
I was halfway home when I finally swallowed my guy pride and I turned around and went to the emergency room at my local hospital. Now we were getting somewhere. The ER Doc didn't like what he felt and ordered an ultrasound. Viewing those results, he next ordered a ct-scan., Then I was sent upstairs to talk to the surgeon. I answered questions about lumps, and night sweats, and lots of things that I hadn't experienced.
They finally explained that I had a large "mass" about the size (but not the shape of) a football. By now, my wife, who worked at the hospital, was there with me. Unbeknown'st to me, she had already called Mom and told her and Dad that I was in the emergency room. When I finally walked out of the hospital with appointments for the following week, everyone in my family was there waiting, full of questions.
It seemed that I was the only one not upset by what was going on. So the following week, I go to another hospital for a biopsy of the tumor, and an appointment with Dr. Jean Liesmann, Topeka, KS, who would become my oncologist.
Ok, so it's a germ cell tumor with an abdominal presentation. It has a better than sixty percent cure rate. Cool! So were going to do a surgery and cut it out..........NOT. This apparently is not the best way to approach this kind of cancer. While the AFP is only a little over three hundred, the mass is quite large. We need to do some chemotherapy to shrink it down before we go in after it.
Ok, cool, again. So we'll do chemo, followed by surgery, and then it'll be gone. That guy mentality again! By the time I arrive to start my chemotherapy, I have not eaten the equivalent of a whole meal in at least a week, just couldn't eat, felt like I was full all of the time. My AFP has all of a sudden jumped to over twenty-one thousand. I do the first week of chemo in-patient. I can't eat a thing in the hospital either. By the end of that week, I've lost a total of sixty pounds, but I feel good because the chemo barely affected me. Very little nausea, and the back pain has finally gone away!
I did a six week regimen of five days of treatment followed by twenty-one days of rest. The AFP had normalized after the second round. I also spent three days in the hospital with pneumonia, about halfway through. So now the tumor has shrunk to the size of two balled up fists and we're getting ready for surgery. Dr's Charles Bollman and Scott Stevens, Junction City, KS, performed a seven hour surgery to cut away the remaining mass. (A note here: while being prepped for surgery, they had started with the anesthesia. I woke up to find two good looking nurses shaving my nether regions. Guys, this alone is almost worth the trouble!)
So I wake up in ICU, with a scar from here to there and hoses coming out of just about every hole in my body. Now it's recovery time. One of the first things I receive in the hospital is a big basket of fruit. But it will be almost two weeks before I am allowed to eat solid food. I am told that the tumor had penetrated the wall of my inferior Vena Cava, and it could not be saved, as well as the nerves that control my plumbing. Cool, a small price to pay. Geeze, that guy mentality!!
Shortly before leaving the hospital, I have slight pain in my legs while walking around, but home I go. Three days later I can't walk. So back I go. Both legs full of blood clots, due to the reduced return rate to my heart. This because of the lack of a portion of my Vena Cava. Another two weeks in the hospital. Finally I can walk again. AFP is still normal, the tumor had no live cells in it, everything is looking up.
"Hey Bob, we want to cut out your right testicle." "What? What the hell for?" Ok, so they need to remove it and make sure that it will not produce another cancer. Fine, cut it out then, a small price to pay. As it turns out, very small. Dr. Liesmann had informed me earlier that, on occasion, this type of chemo my cause the testicles to shrink. Well, alright, a small price to pay. But if you tell everyone that, you may soon be out of business.
So the testicle is removed and tested after several ultra-sounds. Guess what...........nada, nothing, zero, no disease found there. Better safe than sorry. A small price to pay. I opt to have a prosthetic put in the same day. Guy's, avoid this if you can. It was not pleasant and I had it removed later.
So now my hair has grown back, my weight has come back up to 195, and I look and feel good. The AFP has stayed normal, and I do a blood test every two weeks to make sure. Until November of ninety six. oops! The AFP has gone up a few notches. We'll watch it for a test or two. It's gone up some more. "Bob, we need to do some more chemo." "Well, we gotta do what we gotta do, right?" So we schedule another four rounds of chemo, the AFP doesn't normalize until after the third one. But normalize it does. Cool, just a little scare is all. You guessed it.......the guy thing again.
By now it's march of ninety seven, and the AFP is up once again. "Bob, we want you to go to Indianapolis, have a bone marrow transplant." "Bone marrow transplant? That doesn't sound fun at all." It's cool though, a small price to pay.
So off I go to Indy, big hospital, lots of good folks there. By the way guys, if you have to go there, check with your local American Cancer Society about staying at the ACS Hope Lodge in Indianapolis. Truly great folks there too! Cindy Paquin is the lodge manager, and she is quite a gal. Tell her Bob sent ya, and give her a hug for me!
So the first Doc I meet is Dr. Steven Williams, and his first word are encouraging. "Well, I think we can cure ya." "Cool!" Soon I learn just what an autologous bone marrow transplant is. Every thing is in place and we're ready to go. We're gonna spend about 3 or 4 days doing stem cell rescue, then a day or two off and then we get admitted to start the procedure. Gonna be in the hospital for 17 days. Cool, I don't like it, but it's a small price to pay.
Now I'm in the hospital receiving high dose chemotherapy. My immune system is all but gone and I'm in a room all by myself. The Doctors and Staff are great! Dr's Williams and Einhorn visit from time to time. But the brightest ray of sunshine is Laurie, the daytime medical secretary. A great little gal that I am proud to know.
So here is the plan. I receive three days of high dose chemotherapy followed by two days of rest. Then I get my stem cells back on day five. Then it's about twelve days for my immune system recovery, then released for ten days of rest and then we do it again. My body handles the treatment so well, that they try something different. They release me on day 11. This is great! Got out early, but I still have to wear a mask around. More blood tests. Guess what? AFP did not normalize as expected. "So now what?" "Go home. Lets watch it for a while and see if it comes down." Cool, I get to go home.
About two and a half weeks later, my AFP has not normalized, but it has come down by more than half. So back to Indy I go, and another treatment. By the time I arrive, AFP is back to where it started from. Wow! It's going so good. Dr's Abonour and Cornetta are pleased and somewhat amazed with the way my body seems to eat up this chemo, and the lack of negative reaction to it. I am released on day six, the day after my stem cells are returned to me. Unheard of till now!
This time, the AFP doesn't even budge. "Bob, we're up against serious odds now." "Well that's not cool, what do we do next?" I head home, bad news for the family. We are waiting for another tumor to grow large enough to show up on the ct-scan. Hopefully, it will appear where we can surgically remove it, and attack it that way. Dr. Liesmann assures me that whatever happens, she will continue treatment on me until there is a conclusion.
I am not allowed to return to work, so I am sitting home, bored out of my skull. I do blood tests every two weeks and a ct-scan every two months. I wish something would happen. I had another ct-scan yesterday, Feb. 20th, 98. I got more than I wished for. The scan shows disease in both lungs, a small spot in my liver and the lymph nodes along my aorta. Everybody is upset again. "Why you Bob?" "Well why not me, I'm nobody special."
I am not happy about what is going on with my body, neither am I upset about it. It's just one of life's little curve balls. And I figure "what the hell, if I have this disease at the age of 34, just maybe, somewhere in the world, some kid will not get it. It's a small price to pay."
February 21, 1998