CancerGuide: Inspirational Patient Stories
Before you read further, there are a few things you should know about why I decided to communicate anything that I did here. Understanding this will help you read into the experiences that I have had and the ways that I was have been able to deal with my illness to this point. Being able to communicate your feelings about the illness and the effects that it has on you and those close to you is invaluable. It is "Free Therapy." We are currently going through one of the most difficult times of our lives. We have endured tragedies, illnesses, and internal friction like any other family, and like any other family we have dealt with and moved on. For me personally, cancer has been an enlightening experience, and as with many other people, it has made me appreciate what I have and what I have to lose. I have no desire to be someone who stands on a soapbox, or sets the example and tells anyone else how to get past or deal with their illness, because although the cancer that I was diagnosed with is serious and potentially life-threatening, there are many other people, perhaps even including yourself, who are enduring much more serious circumstances. Perhaps I am not the one to encourage you, not going through the same experience. It is my hope that by reading my experiences and the way that deal with them I can help or encourage others to continue to battle and endure despite any difficulties they may be dealing with.
I have a wonderful but unusual family, probably not unlike any other. Weíre the type that fights internally until someone outside the family attacks us and then we all turn on that person unified. My grandmother is the matriarchal figure, the "glue" that holds everyone together and the mediator for all and any disagreements. She has endured a difficult life, from marriage to the raising of 5 children, and helping to raise us 5 grandchildren. Even now, when she is aware that someone has wronged another, she makes an attempt to rectify the disagreement and bring him or her back together. I add this because she has transferred this strength to my other family members and to us as grandchildren. It is because of this kind of support structure that I have been able to cope with the difficulties that I have had physically. There is no substitute for a strong support system and you don't fully appreciate it until itís missing.
I was born with a seriously deformed right leg, I was missing everything below the knee, and the leg was missing a skeletal structural connection to the rest of my body. Both of my parents were very young when married, my mother was sixteen and my father only seventeen at the time. The pregnancy was an accident, which is stressful enough, and a handicapped child certainly wouldnít have made things easier. They were told that I would never walk and probably never be an independent adult. The strain was too much to bear and they divorced soon after.
My mother was now facing life as a young single mother with handicapped infant child. She held a variety of jobs while taking me to specialists, surgeons, and doctors to reconstruct my leg and try to repair what they could. I had multiple surgeries on my leg, everything from growth plate removal to bone fusions. My mother remarried when I was five and by the time I was nine, I had endured nine surgical procedures. Among these, I had an undescended testicle, which I had come to find out now is a common prefix to testicular cancer and is often overlooked. In my opinion, young men with this problem should be followed closely and given regular scans or tests to ensure that cancer is not developing. In this way, if it is detected, it is more treatable and the patient can be given a better chance of recovery if the growth is caught early. Many people, especially men, are uncomfortable admitting or unable to admit to themselves that there is potentially a problem. Whether this is due to pride or fear depends on the person. In my opinion, pride in a situation like this can be and eventually will be fatal if the problem is not rectified as soon as possible. And fear that you have now is nothing compared with the fear that you will have when the doctor tells you that youíre cancer is too far advanced to treat, "you should have come in sooner, you only have 6 weeks to live, go home and have the best quality of life you can." You will see the application of this later. This is a time to think of yourself and your potential illness but just as important, it is a time to be thinking of your family and loved ones. Any delay that is made in this regard could possibly be life threatening, and the fear of not being with my loved ones is what made me get in the car and drive to the hospital.
I neglected to go into my life before this because it was a difficult time, my mother had been divorced, I had left home early, gone to college, met my wife, and decided to move; all of this before my 19th birthday. This was not to my families liking, they feared that I was too young to make such a distant move and marry so young. The concern was genuine but I was determined to go and make a new beginning far from home since things there were less than ideal. I had moved to Canada in 1999 and married my wonderful wife in January of 2000. I was nineteen, she was twenty. My wife has been and continues to be a wonderful steadying influence on me and had given me a new outlook on life and love. In 2001, we had a son and he became the center of our little universe. She was concerned instantly when I told her that I was having testicular pain, and insisted that I go and be seen by our family physician. I insisted that it was nothing serious, thinking that I knew my body better than anyone. I had just changed careers from a job requiring me to climb ladders 60 hours per week to an office job where the most I did was walk back and forth to the bathroom. I figured that I probably was sitting too much or maybe had a groin strain and refused to make a big deal out of it.
Even though I put on great airs and made like nothing was wrong, inside I was very concerned to say the least. I knew that the symptoms I had were those consistent with cancer, and that I had had problems with this testicle in the past. All kinds of things start to run through your mind now; you begin worrying that this may be a serious problem. Scared that this may be something you don't want it to be; this fear was crippling for me. I was terrified to be seen by a specialist because once you know something is wrong, you have to do something about it. I thought about my new wife and son and couldn't believe that something like this may be happening only 1-Ĺ years into my new marriage. We had already accomplished so much in our short time together and I was fearful that we would only have a short time left. All of this was premature though; I still didn't know conclusively what, if anything was wrong with me. After enduring excruciating pain for about 3 weeks, I finally couldn't stand the pain any longer and went to see my physician.
My family doctor is a very playful, lighthearted guy. As soon as he saw the swelling and saw the discomfort I was in, his face got very serious and professional. I think he knew instantly what was wrong but tried to stay positive. He told me I possibly had an infection, which is common, and put me on antibiotics to try to kill the infection. He told me to come back in exactly one week and to call him if things got worse. I was relieved because an infection isnít as bad as I had thought and thereís no other reason to worry right now. I took the antibiotics for three days hoping that this problem would simply go away and that I had been making a big deal out of nothing.
It didn't. The pain actually got worse and the testicle swelled to the size of a large plum. I couldn't even touch it or sit down without unholy pain and by this time my patience with it was gone. I got in the car and drove to the Emergency Room. The waiting room was full when I arrived and the nurse informed me that it would be a long wait. I insisted on being seen immediately but was basically blown off and told that other people had to wait just like me so sit down. This was while I was standing there in front of her with tears running down my face from the pain, holding myself. I felt like pulling my pants down and letting her rethink her decision but thought the better of it. I sat in that waiting room from 8:00 PM to 4:00 the next morning, waiting to be seen. I couldn't sit still for more than 10 seconds and couldn't put any pressure on that side of my body without it aching. It was hellish; people were being called ahead of me with sprained ankles and flu symptoms. I was finally called in and sat on the waiting table for another hour. When the doctor walked in and saw me he immediately called for painkillers and asked why I hadnít been seen sooner. I had an ultrasound that morning and it was the first time I heard the word "cancer" being mentioned by anyone. Even though I still didn't know exactly what was going on, doctors coming in, asking me the same questions, tests being done, I knew that this was something that was much more serious than I thought previously.
I spent the night in the ER and had an ultrasound done the next morning. I remember sitting on the hospital bed with an IV needle in my hand, high on the painkillers, doctors and nurses running in and out from behind the curtain, not knowing anything about what was going on. One of the nurses called my wife and told her what was going on but since she couldn't get to me easily she had to stay and wait for the phone to call. In an unsure time like this one you want to be close to your mate and that wasn't possible.
Later that day the urologist that was on call came in to talk to me. It was one of those unbelievably tense moments that make your skin crawl, looking at the papers in his hand and basically knowing what he was going to way. Even then, I knew that whatever he said about my condition, it was serious and important enough to close the door take a deep breath and review how and what he was going to say before he started. Whatever he said from this moment on was going to change my life and the lives of my family and friends forever...
I was popular when I was a teenager, but not when I was younger. Being handicapped in school with pre-pubescent kids is not a fun thing to endure. People, have a tendency to either fear or reject what is not familiar or what is different. I came from a religious household, I was handicapped, and my stepfather made trouble with the neighborhood kids that I went to school with, so they had their pick of reasons to harass me. Regardless of the reason, I dealt with it in a mature manner for my age, basically ignoring it and trying to make it through your day. I was hit, spit on, called vehement things, had my crutches kicked out from underneath me and then laughed at by everyone in the hall while I tried to get back up. As humiliating as it may sound, I'm proud to say that I never returned violence and only retaliated when my safety was threatened. School officials only got involved when they were threatened with legal action and eventually the behavior stopped. Many of the students who gave me trouble became my good friends after we got out of school, I think some of them felt guilty about what they had done and wanted to make it right. When you encounter difficult people like this, especially in school when youíre a young person, the humiliation that you feel from your peers can leave deep scars psychologically. Being seen as an outcast or being rejected is a hard thing to deal with, everyone wants to be accepted. When youíre forming your identity, you need positive role models and proper guidance, none of which I had. Being dealt with in this was made me angry, angry because I felt that I deserved better, getting along with my disability. I could walk normally, ride a bike, swam like a fish, mountain climb, do ladder work for my motherís business, I even tried out for the varsity basketball team and although I didn't make the cut, it was because my schedule wouldnít allow it, not because of my abilities. My coach at graduation recognized me for the effort. I add this because for one itís a source of pride, but it also was the critical time that youíre learning how to be an adult and to deal with people and situations. Having to endure a difficult time with the disability and circumstances at home like I did isnít a ploy for pity; it helps people to relate with how I dealt with the tests that were to come, and the tests that are still being dealt with. By the time I had moved away from home, my mother was divorcing my stepfather and entering a nasty custody battle with him for my sister. Seeing my mother and her firm resolve to get past this new obstacle was inspirational for me and would help to bring our family closer."Welcome to the world of Cancer"
When this urologist informed me that they had found a cancer-like mass in my testicle and that it would require surgery to remove it, I canít tell you how I reacted to what he said, I don't remember. The feeling, though, was unforgettable. The word "cancer" has multiple connotations for different people. I didn't hear anything that he was saying about the prognosis, the severity of the cancer, survival rates, and treatment options, nothing. My first thought was common disbelief. After going through a difficult adolescence and moving on, forming a new life and finally having the joy of a beautiful wife and child, now I had been dealt a devastating blow. It was crushing. Itís not the sort of thing you hear and can respond wrongly to, whether you dance around the room with joy or break down and sob like a newborn, you can argue that the stress of initial diagnosis got to you. I've always dealt with bad news or stress stoically, without emotion, stone faced and resolved. For me, anger has been a useful tool. Anger is a useful function, anger can mask youíre true emotion or supercharge what youíre feeling. Anger helps you mentally bear down and deal with the pain or surgery or the frustration of rehab. Anger leads to arrogance, which leads to determination. For me, that determination was going to be the only thing that I could use to help me battle this disease that had decided to make me its home. I became determined to fight back, to fight back to attack this tumor that had attacked me first. I didn't initiate this confrontation, but I am absolutely going to finish it. I knew that if it was going to end up taking my life, it was going to have a harder time than any other tumor out there. It had better start taking collections and gather itís forces for battle, because it picked on the wrong person to inhabit and judgment day was coming.
I had been diagnosed with a highly treatable form of testicular cancer; the prognosis for recovery was 95%. But I think that no matter who you are, you think youíre going to be in that 5% that don't make it. Just 48 hours ago I had no major cares or concerns, only silly, petty things like how to organize my photo albums and how I forgot to punch out when I left work earlier that day. Now I was facing the possibility, no matter how scant, that the world I had built could come crashing down. I was informed that this type of cancer also spreads to the stomach in some cases if not caught and treated quickly. Now I wish I had come in sooner, although it wouldnít have made a difference, it would have taken years to grow. They would operate the next day and would remove the tumor to perform a biopsy, which would tell them exactly what form of cancer it was and what the chances of it spreading were. These had all happened so fast I didn't have time to really process what was going on or try to prepare myself mentally. There is a common line of thought that goes with cancer patients when they are initially diagnosed; shock, disbelief, sorrow, anger, determination. I went very quickly through the first two and was now entering the third. Depression in a circumstance like this isnít uncommon, because youíre dealing with something that was potentially life-threatening and thereís really nothing that you can do about it now except rely on the professionals to devise a plan for your treatment and then wholeheartedly put your faith in them to bring you through. Having faith in god is all-important as well, and I prayed constantly for the strength to get through. No matter who you are, your culture or religious background, having faith in something, whether a god or otherwise, can be a great easer of the mind. It gives you an outlet for your frustrations and additional hope that you will get through it all. Nothing will make you lose that hope quicker than depression or feeling like you arenít going to make it. Unless the illness is terminal, than there is always going to be hope, and giving up by waving the white flag of surrender is a foolish thing to do if you have the chance to beat the illness. There are many people with terminal illnesses in the world, many of which would gladly change places with any of those who have a chance to get better and enjoy an enriched quality of life.
The testicle was removed and a biopsy performed. This was to determine the exact type of cancer that I had and to see if there was a chance of it spreading or any chance that it had already spread to other parts of my body. The surgery was relatively minor, but the incision that was left from it was right above the groin to the left, which is where your major abdominal muscles are. This made walking almost impossible for two to three days, and when I finally did start walking again, it was extremely difficult.My urologist brought back the results of the biopsy a few days later and informed me that the cancer had spread to the lymph nodes in my stomach and they had found a large tumor. He recommended 4 sessions of chemotherapy to try to treat the tumor, more options after that would be discussed later on. This was the next step in my treatment. It was extraordinarily upsetting. Being diagnosed with testicular cancer, then having that removed; and having that all done within 3 days, this was a lot to deal with as it was. Now it had been brought up a notch. I had no experience with chemotherapy, no one that I knew had ever gone through it so I didn't know what to expect. We discussed the various drugs that were going to be used and the effects that they may have on the body. I would dare say that had I known the path that I was about to take with the chemo, I don't know that I would have been able to start the treatment.
I was scheduled to begin treatment 4 weeks later, giving me enough time for my body to heal from the surgery and I give me some mental rest and time to prepare. Because the chemotherapy was going to be hard on the veins, my doctors and I opted to have a port-a-cath installed in my chest. This device was a small access port that could be poked with a needle and an IV run through it. This was going to be done when I went back into the hospital for treatment. I went home and tried to resume my normal life. But things were obviously not the same now. I was having abdominal pain from the surgeries, and I was also having severe chest pain. I ignored this at first but, remembering that delaying hospital visits can become very serious very quickly, I decided to go in. I could barely walk or breathe; it felt like someone had jammed two knives into my chest on both sides of my heart, almost like a heart attack. I had only been out of the hospital for about five days. The X-Rays revealed that I had developed two large blood clots in my lungs, most likely post-operative. These were on both sides of my heart and had become lodged in the veins. I had to be put on blood thinners immediately and was informed that had I not come in, it could have potentially been fatal. After a few days in the hospital again, I was allowed to go home with strict diet orders and a bottle of blood thinning pills that I was put on a schedule to take.
I remember thinking to myself in the car on the drive home about how much fun this was turning out to be. I could have driven the route to and from the hospital blindfolded at night in a car with no headlights by now. More than anything else, I was irritated that this had happened to me. A blood clot or the cancer alone was serious enough, but together they now posed a unique threat. Because some of the chemotherapy drugs affect your lungs, one of the 3 drugs would have to be left out of the treatment. This wouldnít pose a serious risk or reduce the effectiveness of the drug.
About one week went by with nothing else happening. I was now two weeks away from starting the treatment. One morning I woke up and had breakfast, which was a slice of pizza. About noontime I began to notice stomach discomfort, by mid afternoon this had turned into noticeable pain. I thought that I might have some indigestion from the pizza, since it was the only thing that I had eaten all day. By 6:00, I was doubled over on the floor in pain. Once again, the pain had become something that was above and beyond anything ordinary, and I drove myself to the ER once again. I don't remember the drive, but I must have coasted through two dozen stop signs and red lights because I couldn't stand to sit there and wait. I ran into the ER, told them I was a cancer patient, and was brought in immediately. By now I was almost passing out from the pain, it was unreal. My entire stomach was enflamed and I kept trying to throw up but nothing was coming up. I had a wonderful nurse watching over me, she saw the condition that I was in and did all she could to make me more comfortable. She even numbed my hand for the IV, because she knew that I was already in pain. They put a tube down my throat to my stomach and tried to clean out whatever I had eaten, thinking that I may have food poisoning or possibly severe acid reflux, but this yielded nothing. A cat scan revealed that the tumor that was in my stomach had begun to lean against the tube that goes from your kidney to the bladder, and this was preventing the kidney from draining properly. Itís similar to kinking a garden hose and creating a large bulge on one side, like youíd see in cartoons. My urologist scheduled me for chemo treatments immediately, because the kidney was in danger of poisoning itself and may have to be removed if nothing was done. I was admitted and brought upstairs to the chemo ward on the 8th floor. Because I had no health plan, I had to share a room with another gentleman. He was a 50-year-old cancer survivor who had just been re-diagnosed with throat cancer and was awaiting the results of his biopsy. More on him later.
At this time, my mother was living in Massachusetts, about 800 miles away, and had planned to be with my wife and I through the treatments. Because they were going to start sooner now, she had to rush here without any notice. This was proving to be a very trying time from everyone in my family. They were so far away and it was difficult to give them all updates about what was going on at the same time. It was a time that having family there would have proved invaluable to me, having a support system around you in critical times is something that no individual should ever take for granted.
The treatments began on a Sunday. The nurse brought in the two brown bags and hooked them up to my IV tower and started the drip. I remember thinking that the fluid inching it way to my veins was designed to kill the cancer growing inside of me, but had to do so without taking me with it. It was a fine balance and was a sobering and defining moment. There is no way to prepare yourself for cancer drugs, you would have no other experiences to fall back on, no point of reference. Itís similar to preparing yourself for married life or having a child. Maybe if you were a drug addict and went on bad acid trips, then you could relate. The treatment schedule was five days on, two weeks off; beginning every third Monday, ending every third Friday. The drugs did nothing to me for the first two days, and I thought how stupid people were to make such a big deal out of them, boo-hooing about the sickness they can bring. I even refused the nausea-repressing drugs that were offered to me because I felt fine. I was about to be humbled.
On the third day she began my treatment as normal, and I immediately began to vomit. Itís not like having an upset stomach or maybe even a flu sickness. Not to be over graphic, but it was the most ignorant kind of vomit that I've ever experienced. It was a violent, jerking motion that couldn't be controlled. My body gasped for air because I couldn't breathe. What came out of my body tasted like gasoline and burned the whole way up my throat. I sat with my head in the trash can for 20 minutes, trying to get rid of something that wasn't there but not being able to stop. I almost passed out from the strain of it and had to be helped back to bed. This went on for the next 3 days until the treatments ended, the nausea-suppressing drugs did little to quell the illness.
The treatments ended on a Friday, I stayed in the hospital until Sunday. My mother had been there since the previous Sunday and had to go home. Even though I didn't feel like traveling, my wife and I, along with our son, decided to go back with her to get a break and spend time with my family. The drive is thirteen hours, and I was still ill. But we got there and enjoyed the next 10 days together. It was a nice getaway from what was going on at home and I was happy to see my loved ones.
I began my other treatments on the third Monday after leaving the hospital, along with countless doctors visits and consultations. I had an appointment almost every day with an urologist, surgeon, and hematologist or at the blood lab. Itís funny because even though you may not feel sick, being subjected to constant medical attention can make you feel ill. You start to believe that something must be seriously wrong with you to have to go so much. I don't like attention either. Some people thrive on being the center of attention and even though I was ill, I still just wanted to go to my treatments and then go home and just relax. The chemotherapy drugs do many different things to people. Some people get extremely ill, some don't get as sick as others. Some people have to be hospitalized while theyíre receiving it, others can go home. These drugs made me extremely aggressive and very short tempered. I couldn't sleep because your mind is racing. Anyone who has ever had a seizure can understand what this is like. If youíre conscious during a seizure, your mind malfunctions and goes on the fritz. I couldn't control my mind and what I was thinking. It completely broke me down mentally, and my wife would come into the living room to find me curled up in a ball sobbing like an infant. This is humiliating as a man and a father; you want to be the rock of the family, the pillar of strength. I was the puddle of mush on the floor. I needed help getting up out of bed, getting to the bathroom and getting dressed. It was completely humiliating. My wife was so unbelievably supportive and would take the baby out of the house so I could have quiet for the day. She put up with the tantrums that I would have and basically showed her support by staying out of sight when she knew that I wasn't feeling well. It made me think how fortunate I was to have such a supportive mate to go thorough this with and what a blessing she was.
There would be five days of treatment, then two weeks of rest. I would be sick a full week after the last day of treatment. The drugs gave me diarrhea, and I would be on the toilet every five minutes. Some of the nausea-suppressing drugs slow down or suspend your metabolism and stimulate your appetite. Sometimes the only thing that made me feel better was to eat bread, bagels, or other thick foods that made my digest and release the drugs. This, combined with sitting at home for weeks on end, made me steadily start to gain weight. I gained about 15 lbs through my treatments, which is not uncommon; most people either gain or lose when theyíre receiving chemo. It really is a small thing when you think of it, I would rather have gained 100 lbs and beat the cancer if I had to. But it was just another thing that no one in that position would have wanted to happen.
Nothing unusual happened during the next 3.5 months. I lost my hair, gained weight, and my car was hit in the parking lot and the bumper was torn off (the other driver took off). I went back to work when I felt better, and this was a nice distraction and a return to some sort of normalcy. I had a lot of friends at work, all of which were happy to see me and offer what support that they could.
I finally went in for my last treatment. This to me was paramount to climbing Mt. Everest or winning the Mr. Olympia competition. I was about to finish one of the most horrible experiences of my life and close this chapter of my treatment. The nurse accessed the port-a-cath and tried to start the IV drip. She wasn't getting any response and accessed it again. A side note: even though having the port in your chest isnít painful, accessing it is. The needle is more than 1.5 inches long and it goes right through your skin. Anyhow, she accessed it 5 times in the next 20 minutes and couldn't get any blood return. Something was wrong. I was sent downstairs for another cat scan, which revealed that the lines that run from the port to the vein had been fractured and was leaking the saline into my chest, onto the muscles. This was going to require another procedure to remove the port and tubing, since it was in a very precarious position and had the risk of slipping into the vein and creating another clot. I had surgery the next day, which they kept me awake for, and removed the unit and the fractured line. I remember the doctor halfway through the procedure, saying "OOPS". "Oops" is not something you want to hear when your surgeon has a scalpel in your chest. He said the line had slipped into the vein and into one of the valves of my heart, obviously not where they wanted it. After a few tense moments, they extracted the tubing and I was sent up to the recovery room. A few days later I finished my treatments, had my celebratory walk of fame out of the chemo ward and said my goodbyes to the nurses, hopefully never to return.
That was 5 months ago. My body functions have returned to normal, my hair has grown back, my stamina has returned, and the weight is coming off. The treatments feel a lifetime away now. It was the most horrible experience that I've had to this point in my life, something that I hope I will never have to endure again and something I wouldnít wish on anyone else; be they good or evil. As I said earlier, if I had known what was coming, I don't know now that I could have started the treatments. Itís an experience that helps you to realign your life and redefines what is important. I still have one procedure left to go through, this should be the final physical step in my recovery. There will still be cat scans and urology appointments, and I'm not completely convinced that the battle is through. I don't believe in total recovery when it comes to cancer. This is a lifetime illness, once youíre diagnosed; your life is changed forever. There is no returning to the innocence of your pre-cancer days. The psychological scars that are left from the illness and the constant fear of the cancer coming back are going to haunt me forever. Most people are life-insurable two years out of the treatment with nothing coming back [Whether you're can get life insurance after two years or even ever will depend on your situation -ed]. People who tell their story canít properly close it because there is no conclusion. You will fight this horrible intruder and the ghosts that it brings for the rest of your life. There is no rest or relaxation. Many people, including myself, feel a civic duty to try to encourage those who are newly diagnosed because they feel that they may have something to offer. Maybe something I've said has encouraged or inspired you to continue to keep on fighting, to smash through the psychological barriers that would hold you back from continuing the treatment or that are trying to get you to give up the battle. The only way that I was able to endure was a strong support system, a loving wife and child, faith in god, and blatant arrogance and stubborn anger at what was happening to me. I was and continue to be determined to fight and struggle through my illness with my family. Not because I want to be a hero, or inspire other people to be better, but because you either try or die. Thereís no reasoning with cancer or nicely asking it to cease and desist. If you allow it to run rampant through your body without trying to fight back, it will take you down and will not apologize. The man that I shared a room with in the hospital mentioned before, his urologist told him that his cancer was terminal and was not treatable. He gave him 6 weeks to live and told him to go home and try to enjoy the remaining time he had with his family. This man had all of his family in the room at the time, wife, children, brothers, sisters, and grandchildren. Everyone broke down crying and it was a horrible thing to witness. But it made me determined to get through this, that if someone was to talk about what a shame it was that I had passed away from cancer, they would be able to follow it up with commendation about how hard I had fought. I thought about my 13 month old son and my new wife, the wonderful new additions to my family that I may lose if I gave up. I thought about my mother, who once told a friend that the worst thing that could happen to her was one of her children dying from a terminal illness. Since I was already halfway there, I wasn't going to be responsible for her misery. I thought about my grandmother, who had endured 33 years of violent beatings, family tragedies, and the raising of 5 children. She never complained about her situation, about how she was 70 and single, or how our family has never had any real happiness. She continues to be the adhesive bandage that holds our family together in times of crisis and is the person that I draw much strength from."The Roller Coaster"
When I wrapped up my thoughts last time, it was just before I was scheduled to go in for another procedure related to my treatment. Since the cancer had spread to my lower abdominal area, there was some concern that it may have gone further, maybe even to the lungs. Oncologists have told me that if this particular type of cancer reaches the lungs, you can get into a lot of trouble very quickly. If it reaches the throat or brain, the chances of survival are not good. The reasoning behind the surgery was that if there was anything starting in the middle abdominal area, it would spread relatively quickly and be much more difficult to contain.
This procedure was scheduled for the 3rd week of October in Halifax. I use the term "procedure" liberally when I talk about the operation. For your benefit and to help you to visualize what happened a little easier, "gutting" the patient is probably a better adjective. The operation is called a Retroperitoneal Lymph Node Dissection. Breaking that down: "Retroperitoneal" relates the the peritoneal artery that runs down the center of your abdomen, carrying large amounts of blood to your lower body. This artery has many lymph nodes on the exterior of the vein, these lymph nodes are where the problem often begins. The "lymph node dissection" is just that, opening up the patient and "clipping" each one of these lymph nodes off of the artery. "Opening" me involved a deep incision that started at my sternum, ran down around my belly button, and ended about 3 inches from my groin. It was one, long, deep cut. Because the operation requires about 4 weeks of recovery time and is very difficult to come back from, we decided to have it done in Boston, Mass. at the Dana Farber Institute. I want to add that this is one of the finest hospitals I have ever been involved with. The surgeon that worked with us was very sensitive to our concerns regarding the operation and gave us a realistic idea of what to expect. This was a dangerous procedure, and there were no guarantees that I was going to wake up from the operation, the odds were bad enough to be worried about it.
The operation was performed on the 30th of October 2002, which also happened to be my wife's birthday. It's extraordinarily difficult to walk into a pre-op area, knowing that you're about to engage in something that's going to be very hard to recover from. I almost wished that I hadn't asked so many questions about what was going to happen to me today; Knowing what they were going to do made it more difficult to submit myself to it. But again, I tried to remind myself of the possible alternative, not having this procedure done could prove to be life threatening in the near future and that's a risk that I wasn't yet prepared to take. All of my family were there to see me off. My aunt and uncle had traveled up from New Jersey the day before. Sylvia's mom had come down from Halifax to be there for her also, which was great comfort to me knowing that she had someone else close to her there. And of course my mother and her husband were there to provide support. I remember kissing my wife and the baby goodbye, welling up with tears, and walking away.
When I was put under, the last thought to go through my mind was wondering why this had happened to me. Why did I have to go through all of this, was there a reason? I considered myself to be a good person, a loving father and adoring husband. A loyal son, hardworking employee, and grateful grandson. Why do bad things happen to good people? Its a thought that no matter how much you struggle with it, the answer is not an easy one.
I did wake up from the operation, glad to say, and remember the relief that came with consciousness. But even with the painkillers that they had me on, the agony of the incision was immediately apparent. Even seeing pictures of the operation being done beforehand didn't prepare me for what I woke up to. The incision was indeed large, I would guess over 12 inches long. I couldn't move at all, even when they put the head of the bed up It almost drove me to tears. I was out of the recovery room about 3 hours after the procedure ended and they had me walking up and down the hall with a walker. The most important thing after this procedure is to move ASAP, because if you just lay in bed, your stomach and bowels will stop working, obviously this is something you want to avoid. To make it short, I was in the hospital for 5 days, unable to eat or use the restroom at all, and when they discharged me we went to stay with my mother and her family. It took my body about 2 weeks to start working again to where I could eat and my body would process the food and dispose of it properly. It was about 3 weeks before I could walk without crutches, and about 5 weeks before I was off of the painkillers.
I received a call from my oncologist about 2 weeks after the operation informing me of the results of a biopsy that they had performed on the lymph nodes removed. Unfortunately, their concerns had been proven true and there was cancerous cells found in a small percentage of the lymph nodes. The percentage was actually very small, only about 5%, but any cancer was too much, more chemotherapy would be necessary. When I asked him why the 4 previous rounds hadn't killed this cancer also, he informed me that the previous treatments weren't as strong as they should have been, even though they had been reasonably effective. This made me laugh, honestly, "not strong enough" had caused me to hallucinate, vomit, cry, shake and want to die. Now this doctor is telling me that they're going to give the full strength, maybe more. It was not what I wanted to hear. I was very weak from not being able to eat, in lots of pain from the operation, very edgy from the painkillers and this drove me off the end psychologically for a few days. I became a recluse, wouldn't come out of my room or talk to my family. I had really believed that this was going to be the end, this surgery would be the last physical treatment that I would need and that I would be able to recover from this, which was in itself very difficult, and then move along with our lives cancer-free. Now, I was being told that I had to go back into the depths of despair, into the lions den. It was a miserable time and it actually slowed down my recovery from the operation. They started the treatments on the 3rd week of December. This was a very different experience from the first treatments that I had gone through. I knew what I was getting into now, I knew what this was going to do to me. I remembered how sick I was the first time, and the knowledge that this was going to be more potent medication only served to increase my anxiety. I was throwing up from the nervousness the morning that I was scheduled to begin. Again though, the knowledge that this was the next and possibly the final step in my treatments was the fuel that I used to drag my body in for the punishment that it needed to receive.
These 2 rounds of chemo wrapped up on the 10th of January 2003, about 40 days from when I'm penning this now. I don't honestly remember when the 1st ended and the 2nd began. I was so unbelievably, violently ill the entire time. I was so sick that I couldn't even stay in the house with my family, I had to go stay at another relative's apartment that was out of town for the winter. Alone. I reeked of the chemo drugs, i literally stank of the drugs. The smell of it came out of my sweat glands, my breath, my skin, any body movements. The sheets that I slept on had to be changed every night because they were yellow and smelled horrible when I woke up. I spent each day in a daze, struggling to function and suppress the torture that my mind was going through, but this time I couldn't hold it together. I was throwing up every 10 minutes through the day, and even though I couldn't eat, my body kept finding things to throw up. Believe me when I tell you that there are few things in the world that make you feel worse than your family members attending to you with surgical masks, plastic aprons and gloves on. Makes you feel sick even if you're not. Mercifully, even though the side-effects were more severe, they only lasted for 3 days rather than the 5 days from the 1st rounds a few months earlier. This didn't make sense since this round was stronger, but I wasn't going to complain.
At the end of these rounds I had another CAT scan, which showed that nothing new had grown since the previous one about 2 months earlier. This should have been good news and a reason to celebrate, but I was still too ill to fully understand or appreciate this. It was a source of relief to my family members and that alone made me happy.
And this is where I stand now. I haven't had another checkup since the 1st week of January. No bloodwork, scans, illnesses, doctors... nothing. This experience has taught me to never get comfortable with my health situation. Just like I didn't get excited when they gave me good news, I also won't get too depressed if I happen to get bad news in the future. This roller-coaster of emotions that you find yourself on, good news, bad news, good news, bad news... I think that's more destructive than anything else related to cancer treatments. You need to believe that you're going to get better. Negative thinking is not conducive to your recovery. As I've said in the past and is said so often, you have to make the decision whether you'll fight or die, no one else. If you don't believe in your heart that this illness is something that can be defeated, than the battle is already lost. There have been cases of patients with terminal illness. People whose relatives have been told to make funeral arrangements. These people have come back and are still alive to give testament to the power of positive thinking. I know that if this illness takes me down in the future, it won't be with tears of misery or self-pity. The tears will be from me biting through my bottom lip with the determination to at least serve as an example to others, showing people that even though very bad things happen to good people, that doesn't mean that good things can't also.
This is where I will conclude. I have taken a great load off of my shoulders by expressing my experience to you. I will keep this as a reminder when I get down or depressed about my illness, because I will have the hope that I have helped another person with less or more severe circumstances come to grips with their illness. I am glad that you have taken the time to read my story and hope that it has encouraged you to continue your battle, for yourself and those that love you. There are so many things that happen to us in our lives, cancer is one of those horrible things that you hope never happens to you. And although you canít control whether or not it happens, you can control how you deal with it. You make the decision whether you will try or die, and the decision you make will affect you and those who love you. For me, whether I win this battle or not, I will conclude things knowing that I fought as long and as hard as I could have, and I encourage you to do the same.
If you would like to contact me please feel free to send me an e-mail at [email protected]
This CancerGuide Page By Brent Galster. © Brent Galster
Last Updated: 2003