After we buried little Joshua, I took a week off from my construction job, to mourn and to be with Luann and the boys. On the morning I was to go back to work, I forced myself out of bed and began my morning routine. As I was shaving, I noticed a stiffness in my neck. A little examination revealed a large mass. It covered the left side of my neck and extended downward, filling the hollow spaces of my collarbone and pushing out underneath, atop my ribs in the front. It was rock hard. I knocked on it; it made a rapping sound! It wasn’t painful, really. Just kind of worrisome, that such a thing would literally pop up overnight.
I spoke to Luann about it. We both thought that it was probably somehow related to the stress of losing Joshua, and/or the fact that I hadn’t been eating or sleeping well. Still, at the time, neither of us was prepared to handle even one more problem, no matter how small. So we called the doctor, and he agreed to see me later that morning.
I continued on to work, and left at mid-morning to see him. This was our family doctor, the same general practitioner who had delivered Joshua. It was obvious that he didn’t want to see me any more than I wanted to see him. Not this soon, anyway.
Not knowing what to say to each other, we both endured a cursory exam. He said “It’s probably just an infection of some kind. We’ll just try some antibiotics for a couple of weeks.” He wrote the prescription, and we both hoped that would be the end of it.
Well, two weeks passed and ‘The Lump’ (as we came to call it) was still there. I went in once more, this time the doctor’s comment was “You’re a young guy, and you look pretty healthy. We’ll just wait a couple more weeks. Maybe it’ll go away on its own. We don’t want to panic.” Panic? Why would I “panic”? The thought still hadn’t occurred to me that it might be something really serious.
Two more weeks passed, and not much changed. “The Lump” was still there. Grudgingly, I returned to the doctor’s office. He seemed a bit irritated that I hadn’t had the courtesy to heal as expected. I believe he was afraid, actually. Afraid that our conversation would turn to Joshua. That I might ask questions for which he didn’t have answers. He said “I still don’t think we need to jump into anything heroic.” Heroic? What in the world did that mean?
He admitted, though, that we should schedule a biopsy. He said that since this wasn’t really a big deal, he would set it up with a local surgeon. This man was pretty much retired, but he still came in on Fridays to perform minor surgery. Ever hear the old definition of that term ‘minor surgery’? It’s surgery they do on someone else.
Anyway, the biopsy was done about a week later by an elderly doctor who seemed nice enough, if a bit perfunctory in his manner. The procedure was done in an Operating Room at the same hospital in which Joshua had been born such a short while before. I remember my legs feeling like lead, the almost overwhelming sense of foreboding as I willed myself, step by single step, to walk into that place once again.
The biopsy itself involved a single incision about 1½ inches long on the side of my neck. That didn’t seem too serious in itself, but it marked a definite turning point in my disease. It wasn’t until later I learned just how risky this ‘minor’ procedure really was.
That first biopsy marked a clear turning point for me. I began feeling noticeably sicker each day. I waited about ten days, expecting to hear something. Finally, I called my doctor, only to be told that giving me results was the surgeon’s responsibility. I had, after all, been referred to him. I called the surgeon. His position was that he had simply been called in to perform a procedure—my doctor was still my doctor. He finally agreed to contact the Sheboygan Memorial Medical Center. This was a hospital in a neighboring city that was large enough to have its own pathology lab, and that is where the tissue sample had been sent.
The surgeon called back the next day. “We need to do a second biopsy,” he said. “There was a message from the pathologist. He thought he saw something, and he wants a second sample to be sure.” I still can’t believe how naive I was, but I agreed and the second surgery was done—another incision just above the first. (I was later told that second biopsies were never done on the neck because the risks of damaging the nerves that feed the arm are so great. When I first saw the oncologist sometime later, one of his first questions was “Can you still feel your arm? You’re lucky.”)
By now we were getting worried. I was struggling to get through an 8 hour workday, sleeping through lunch breaks and fighting to stay awake on the drive home. Often I’d have to pull off to the side of the road and stop to nap. At the end, it took me more than two hours to make what should have been a 20 minute drive home. Just a year earlier I could heft a 90 pound jackhammer to knock boulders out of barn foundation walls. Now it was all I could do to pound a few nails in my concrete forms.
Again, we waited. A week, ten days. More calls, the same argument between the doctors. We asked ourselves what could be so terrible that neither doctor wanted to be the one to tell us? In desperation I called the pathology lab that had done the work. Through my records they were able to track down the pathologist who had actually done the job. He was there.
At first he was reluctant to say anything. I pleaded with him, explained the delays and the problem between the two doctors. He finally said “I’m sorry this happened. You should have been told weeks ago. I saw Reed-Sternberg cells in the first tissue sample.” Reed-Sternberg cells???
“They indicate Hodgkin’s Disease.” I thanked him. He said “By the way, why did they do a second biopsy?” I told him what the surgeon had said—that he (the pathologist) had ordered it. That he thought he saw something and wanted a second sample to confirm it.
“I did leave a message on his answering machine. What I said was that I saw Reed-Sternberg cells, and wanted a second opinion to confirm it. That’s standard procedure. I sent a slide of the first sample to the Mayo Clinic for confirmation. I never said you needed another biopsy.”
My head was swimming. I had been subjected to a needless surgery because of a misunderstood phone message. I apparently had something called ‘Hodgkin’s Disease’. I still had no clue as to what it was, but it was serious enough to get the Mayo Clinic involved. Still, it wasn’t time to panic. “So, did the Mayo Clinic confirm it?” “No, no word from them yet.” It had been about three weeks.
Another phone call, this time to Mayo. After a few transfers, we spoke to a man who told us that the sample was indeed there, but had yet to be examined. He explained that the doctor who was to do it was the very best at identifying that type of cell. The problem was that he was on an extended vacation, and was not expected back for about three more weeks. Again I found myself relating the saga, and how quickly my health was deteriorating. At this point I really didn’t think I could wait another three weeks.
“This is the Mayo Clinic, right? The world famous Mayo Clinic?”
(Proudly) “Yes sir, it is.”
“Do you mean to say that in that whole place filled with the world’s top experts, there’s only one guy that knows what this cell looks like?”
“Well, of course not. But he’s the best!”
“I’ll trust your second best. Your third best. Please, just have someone look at it.” By this time I’d have been happy with the janitor, if he knew how to use a microscope.
Three hours later, the confirmation had been made, the pathologist notified. He had personally called the surgeon, who reluctantly called me. He asked that my wife and I meet him at his office right away. Hmmm. Apparently this is the kind of news you can’t tell someone on the phone. Still, not quite time to panic.
We met him in the parking lot and walked in together. After making sure that we knew this really wasn’t his responsibility, he told us they had found something. Hodgkin’s Disease, he mumbled. Not a serious case though, he was sure. After all, I was young, and looked healthy.
Now maybe this was a bit mean of me, but I hear confession is good for the soul. I did everything in my power during that meeting to pry the ‘C’ word out of him—to get him to say the word ‘cancer’. I couldn’t do it, but watching him squirm and talk around it made me feel better than I had in weeks.
“What exactly is Hodgkins Disease”
“It has to do with the lymph system.”
“But what is it? And what does the lymph system do?”
“They’ll explain all that when you get to Milwaukee.”
“Milwaukee?” This was new.
“There are only two places in southern Wisconsin where you can get the treatments. One is this place in Milwaukee, the other is the University of Wisconsin Hospital in Madison. That’s where we’d send you if it was a really serious case. But I’m sure Milwaukee will be fine for you.” There’s some food for thought, eh?
I don’t know what the pathologist said to him. He never did say anything about that second biopsy. But we never got a bill for it.
We returned to the family doctor for the last time and couldn’t get him to say the word “cancer” either. He did, however, make it clear that he was pretty much washing his hands of us. There would be no reason for us to call him again.
By now we were desperate for information. I was getting sicker by the day, but still trying to work. Our appointment at St. Joseph’s Oncology Center in Milwaukee had been set for us by the doctor’s office staff—about a month away. We looked up Hodgkin’s Disease in our home encyclopedia.
Hodgkin’s Disease—A form of cancer affecting the lymph system. Cause unknown, Fairly rare. About 6-7000 new cases reported each year in the US. Found mostly in younger men (mid 20s) who are otherwise healthy. (Sound familiar?) One of the least painful forms of cancer, but also one of the most rapidly fatal. Median life expectancy; 2 years after diagnosis, with treatment.
OK, now it was panic time! Two years??? But wasn’t the medical field finding new things every day? We checked the front cover. Our books were published in 1970; they were ten years old. We found an ad for a series of Info-tapes on Hodgkin’s offered by the University of Wisconsin in Fond Du Lac. These gave pretty much the same information, except they gave me a “Median Life Expectancy” of four years with treatment. Things were really looking up. Yeah, right.
We tracked down the person who was responsible for maintaining the tapes. He pulled one of them and checked for us. Copyright 1973; seven years old. I chastised him and hung up. Luann and I just stared at each other, then just sort of melted. All the uncertainty, all the frustration, all the fear had finally brought us to the breaking point. And we collapsed under its weight. We just held each other and cried. I looked up to see Shane and Jason playing in the yard and wondered how much longer I’d be with them. How I would tell them.
Once we collected ourselves, we called St. Joseph’s. We were able to move the appointment up; I could be seen in about ten days. We resigned ourselves to a long ten-day wait. A few restless nights later, I happened to see a 2:00 am public service announcement for the Cancer Hot Line (1-800-4CANCER). I had probably seen it many times and simply didn’t pay attention. After all, it never had anything to do with me, right? It was a 24-hour number. I called immediately. For the first time, the light of real information shone on the situation.
I could devote an entire book to praising this service and the people who give of themselves to make it work, and still not adequately show my appreciation for the good that they do. We spent 90 minutes on that first call, and came away with a wealth of information—about the disease, possible treatments, medications and side effects, risks of the various tests and treatments. Questions to ask the doctor when we saw him. Diagnostic tests, procedures and surgeries I could expect, with detailed information about each. Within a few days I received a very large packet in the mail, a thick manilla envelope with even more information, and leads to many other resources for help and supplies, such as dietary supplements I would need. Best of all, their information was updated daily (I asked).
What did they have to say about that “Median Life Expectancy” thing? It seems that term was no longer being used in relation to Hodgkins. The cure rate (based on 5 years without recurrence after treatment) was about 90 percent if the disease was diagnosed in Stage 1 or 2, still 75 percent in Stages 3 or 4 (more advanced). That was as good as anyone could say. There weren’t any ‘10 year cures’ out there yet.
Then the next question. What about the other 10-25 percent—the ones who didn’t make it? Why didn’t the treatment work for them? Unfortunately, this one no one could answer, except to say that it had nothing to do with age, gender, or general health outside of the cancer. Some people just didn’t get better. So, although things were looking more hopeful, there would always be that measure of uncertainty. I could go through the entire process and still die a few months, or a few years, later. Meantime, I was still getting progressively worse. I was noticeably weaker each day, and started losing weight. I lost about eight pounds in the week before we made it to St Joseph’s.
Since we had basically been told by the surgeon that we were being sent to the second best facility (the ‘good enough’ one), we resolved to give it a one-time-only chance. We would go for the initial consultation, but if we weren’t completely comfortable it would be “Goodbye Milwaukee, Hello University of Wisconsin”. This was no small decision. As it was, Milwaukee was about 60 miles from our home, Madison closer to 100. There would be a lot of commuting involved, especially once I started the daily treatments. We were just tired of the whole mess, of the problems being minimized because I was “young and looked healthy”. We were tired of doctors who didn’t listen, who were too busy (or careless) to even verify simple phone messages.
We walked into the exam room at St. Joseph’s armed with more than a page-long list of questions, and a notebook to begin recording the answers. The oncologist (Dr. K) was a pleasant man who didn’t look much older than me. He had a quiet voice and confident manner. The physical exam didn’t take too long, mostly he poked at ‘The Lump’ and checked for others. When he finished, he asked “Any questions?” We pulled out our list and handed it to him. He took a look at it, smiled, and began to teach.
I have to say here that after my experience with him—and with all the staff at St. Joseph’s—I became spoiled as far as medical care is concerned. I learned just how good it can (and should) be, after years of dealing with doctors whose egos and attitudes prevented them from being true healers. Dealing with those who practiced “assembly line medicine”—cramming their schedules so full of patients that they had no time to treat people as human beings. My vow to my family and myself is that we will never again be subjected to the ‘care’ of doctors who don’t. If a doctor doesn’t have time to answer my questions, then he surely doesn’t have time to take care of me, and I’ll happily help him to lighten his load.
Dr. K gave us that time. He spent the next 45 minutes teaching us. He talked about diagnostic tests and surgeries that I would need. He showed us other patients’
x-rays (unidentified, of course) to illustrate things more clearly. He took us into his small, shared office space and pulled out textbooks to show us pictures and charts. He showed us reality, but at the same time, he gave us hope.
One of our biggest concerns was the rate at which I was weakening. Treatment couldn’t begin until the cancer was staged; they had to know where it had spread and how advanced it had become. This would take at least a month and involve multiple procedures, some as benign as an x-ray, others major surgery. I always found some irony in this. I made it through the car crash, in which I had sustained multiple major traumatic injuries, with only a single visible scar about 1″ in diameter left by the insertion of a tube in my chest.
Hodgkin’s Disease is a form of cancer unique in that being a systemic disease, it can’t be surgically removed (like a simple tumor). It is also one of the least painful forms; the victim feels sick, but doesn’t have the excruciating pain of, say, a bone or spinal cancer. Now, however, I would need a number of surgeries just to stage it. By the time we were finished, I had collected over 18 inches of scars and healing incisions. The worst was from a ‘suitcase incision’ that extended from my chest to my pelvis. It’s appropriately named, by the way. The patient’s abdomen is opened up like a suitcase. Pretty much everything that can be is removed and examined, tissue samples snipped from dozens of sites, and in my case my spleen and appendix were removed. A piece of my hip was cut away to obtain bone marrow. Then whatever is left is put back in and the incision stapled closed.
To top it off, as soon as you wake up, some silly nurse expects you to cough! I know how important this is to prevent pneumonia (I’m a nurse too, remember?). But all I could picture at the time was those staples popping out and me trying to push my guts back into my belly. It sounded really messy. I did do the coughing, but not without hugging a pillow. Tightly. For weeks.
Another test was called a “lymphangiogram”. This one involved having a blue dye injected between my toes. The injections had to be done with no anaesthetic, as the medication would somehow interfere with the dye. The dye would be absorbed by the lymph vessels, which are otherwise invisible. They are only about the diameter of a hair, and the fluid (lymph) is clear.
Once the dye had time to color the vessels, an incision would be made across the tops of my feet to expose them. Using ‘cheaters’ (large magnifying glasses) the doctor would then attempt to insert a needle into one of them. Finally, a radioactive dye would be slowly injected using a syringe and a special pump. The dye would show (on an x-ray) the entire lymph system below the diaphragm for up to two years, which would enable the doctors to watch for enlarged nodes that might mean the cancer had spread. The procedure needed to be done on both sides of my body.
I tried to count the number of times a needle was plunged into my feet that day. Let’s just say that it did not go well—I quit counting at 120 injections. Turns out I had “a shortage of lymphatics”: by the time they finally got the needles in the lymph veins, there were so many holes that the radioactive dye just leaked out. They had to start from scratch on my left foot because the blue dye disappeared after a time, which meant all new injections and a second incision. They finally just gave up on the right. Although the procedure normally takes between 80 and 90 minutes, I was on that x-ray table for 5½ hours. By the way, local anaesthetic does not numb anything after about three or four hours. It just burns.
The lymphangiogram was done as an outpatient procedure. By the time we got to the drugstore to get the pain medication, my feet had swollen to the size of basketballs. I laid in my friend’s van with my feet planted on the ceiling, in agony, and my wife trying to hold bags of ice up against them. It was about three weeks before I could even wear house slippers.
A question I’m often asked is how I couldn’t have known that I was sick before the appearance of “The Lump”. The answer is—I knew I hadn’t felt really good for a while, but the symptoms of the disease are so vague that I simply didn’t realize that they were signs of anything serious. My job at the time was remodeling and installing equipment in dairy barns, such as barn cleaners, stanchions, pens and the like. I worked long days, around lots of animals, manure and hay and flies. So, feeling run-down, tired and itchy wasn’t too alarming. It was only later that I learned these things were related to my illness. As it turns out, it was a blessing that “The Lump” showed up when it did. There’s a type of Hodgkins Disease that shows no symptoms—they find out you had it when they do the autopsy.
In addition to the cancer itself, a huge concern for us was our future ability to have children. We were assured that there was no reason to think that what had happened with Joshua would repeat itself. We were told that if I only ended up getting radiation therapy above the diaphragm, we’d have to wait about two years before trying to get pregnant because of the risk of damaged sperm from “scatter” radiation. If I ended up needing chemotherapy or radiation below the diaphragm, then there would be permanent genetic changes. No more children, ever.
Another brainstorming session, another round of phone calls. By now we were getting to be pretty good telephone researchers if nothing else. (Remember, in 1980 you couldn’t just do an internet search; the world wide web did not yet exist.) Our idea was to have some sperm frozen for later implantation in case things did not go well. We definitely wanted more children and, after Joshua, the prospect was scary enough without added risk. We were ready to do anything to minimize the chances of another birth defect.
The Michael Reese Hospital in Chicago had a fertility clinic. Through that agency, we were directed to a private cryogenics lab in downtown Chicago. The clinic would send patients there who had low sperm counts. There specimens would be collected and stored until there was enough to concentrate and fertilize, either in vitro or by artificial insemination. Back then, they had never heard of anyone storing sperm for this particular reason but they would be happy to accommodate. To us, it was a great insurance policy.
We shared our solution with Dr K. He thought it was “cute”. Later, he told us that he ended up suggesting it to other patients in similar circumstances. Now this is a common solution. As it turned out, we never needed to use the specimens. We eventually had three normal, healthy daughters (although there have been times when I’ve questioned the ‘normal’ part, especially during the teen years). Only kidding, girls. As far as you know.
In October, we were finally ready to begin the treatments for my Stage 1 Hodgkin’s Disease. (Remember, the Lump had appeared July 3rd). I would have radiation therapy only—no chemotherapy unless something went wrong. I was to be radiated with an element called Cobalt 60, and everything above my diaphragm would be radiated. Small lead blocks were fashioned to cast “shadows” that would shield most of my lungs from the radiation. The regimen would be treatments five days a week for 6 weeks, more if necessary. I recall the day I had to sign the consent forms for the treatments. There was a short stack of papers outlining the risks, side effects and damage that was certain (or likely) to be caused by the radiation.
Boiled down, they said that the treatments would definitely hurt me, make me sicker than I already was. There was a small chance that the radiation damage could eventually lead to my death. There was no guarantee that they would cure or even slow down the cancer. But, go ahead and try anyway. These were some of the most frightening papers I have ever signed. I felt as though I was climbing into the barrel to go over Niagara Falls. The doctor also said that the radiation would probably shorten my overall life expectancy by about 10 years (their best “guesstimate”) because of a late effect of the radiation, a rapid aging process that would last about two years.
The Radiation Therapy Department was in the basement of the hospital. They were often placed there to provide more natural shielding. The doorway to the chamber was deep and foreboding; the walls were three feet thick and made of leaded concrete. I would go in, remove my shirt and lie on a hard table. The technician would position me on the table, then adjust the lead lung shields on a plate of plexiglass that hung from the huge Cobalt unit above me.
Those shields were basically an attempt at a sort of balance between helping me and hurting me. They needed to cover as much of my lungs and heart as possible while still allowing enough of my chest to be radiated such that no cancer would be missed. There was always a chance that some of the cancer would be covered as well, or that there would still be some kind of damage to the internal organs.
I’d lie very still on that table, the machine would start and radiate me for anywhere from two to three minutes. Then I’d turn over and do the whole thing again. I told them they should just get a giant spatula, and flip me when I was done on one side. The treatments themselves I just called my “radiation baths”.
I’ve heard that some people have radiation therapy with no ill effects. I wouldn’t know. I had every problem in the book. Some could be definitely attributed to the treatment, some to the disease, and by the time we were done we weren’t sure which was worse. My skin burned and discolored, as though I had worked 50 years in the sun without a shirt. My hair came out by the handful. My teeth became brittle and began to crack. Vomiting and diarrhea were my constant companions. At one point I had to be admitted to the hospital for dehydration. I had declined to the point where the only way I could tolerate any fluid was intravenously.
I thought I was fatigued before. Little did I know that within two weeks of treatment I would be sleeping 20 hours a day. The longest I stayed awake was about an hour and a half after the boys got home from school. Usually I couldn’t stay awake more than 30 minutes at a time. “Night sweats” (another symptom of the disease) did not just happen at night anymore—these episodes would hit so hard I could barely move. They would usually last about 10 minutes, after which I felt like I had just run a marathon. My clothes would be drenched, and bed linens would be so wet we could wring them out.
The concept behind the therapy was not to kill the cancer, as one might suppose. They had no way to do that. Instead, the treatment would destroy the ability for the cancer to reproduce, and, as the cells already present died off without reproducing, the cancer would eventually be gone. Theoretically.
To accomplish this, the therapy targeted cells, such as cancer cells, that reproduced rapidly. Unfortunately, there was no “magic bullet” yet. So, cancer cells were not the only ones affected. Hair cells and the cells that form the protective lining of your digestive tract are routinely lost and replaced by the body, so they are affected also. That is why you lose your hair, and have the problems with nausea, vomiting and heartburn.
The lining of my mouth tasted just like what it was: dead tissue. Even though I tried to force myself to eat, within 10 days the only thing I could stand was orange juice because the acidity seemed to cut through the taste. Of course, all of this acidity tore up my stomach. Before I was done with the treatments I had lost more than 60 pounds. My normal weight was between 215 and 225 pounds, but I was down to 161 pounds. At 6 feet 4 inches tall, I looked like someone’s death camp photo. We had to hire a van to take me to and from the therapy because I was too weak to sit up for the hour-long drive each way, and my wife didn’t drive.
One of the hardest lessons I learned through all this was that there really is little limitation to the level of ignorance that people can show to each other. From the early problems with the doctors, to some who I thought were my closest friends. I remember sitting at their kitchen table the day the cancer was confirmed. More than anything I wanted—needed—someone to do nothing more than put their arm over my shoulder and tell me that I wasn’t alone. That they would be there to help and that things would be okay. What I got was three people backing away from me with their hands over their mouths, “What causes it?” “They don’t know?” “Then it could be contagious, couldn’t it?
The worse things got, the worse I looked, the more it seemed that people distanced themselves from us. I think that many were simply uncomfortable, and didn’t know what to say. So they said nothing. Our struggle went on a long time, and another common failing in us, I think, is that we tend to forget or minimize problems unless we’re very close to them. Out of sight, out of mind. How often do you think about starving kids in Haiti unless you see an ad or commercial pleading for help? How long does it stay in your mind after the commercial is over?
Every once in a while we hear about someone who has become a hero for a certain cause. One who has seen a problem, made it his own, and worked until they made a difference. I think, these are people who have not shied away because they were afraid or uncomfortable. They just saw the need as greater than their own comfort, and kept it at the forefront of their thoughts and lives until they had done all they could. The sad part is that any one of us can do something. I didn’t expect anyone I knew to come up with a cure for cancer. What I longed for was the touch of a hand, a hug. A prayer. A smile.
About midway through the therapy I finally hit bottom emotionally. I was getting noticeable sicker every hour, it seemed. I knew the treatments were contributing, but I didn’t know that they were helping. I told my wife I wanted to quit—stop the therapy, and accept whatever might come. I wasn’t suicidal, but I guess the only way to say it is that I just didn’t have any more fight left in me. We talked a long time. She certainly did not want me to die, but saw the suffering and understood. She would accept my decision. Once again, I quietly watched the boys playing outside the window. They never knew it, but I truly believe that they saved my life that day. You see, I just couldn’t do that to them. They had already lost a father who had basically abandoned them. I couldn’t put them through the pain of losing another. So I decided to stick it out.
Living in Wisconsin placed me far from my family and home church. Luann and I had never found a church in the area, and without that community our spiritual lives had drifted. We believed, but there was something missing. I surely didn’t have any real support base within reach beyond Luann and the boys. I believe the one thing that got us through, though, was the fact that we still prayed. Not often, not regularly. No flowery language. No ‘Thee’s and ‘Thou’s. No memorized mini-prayers. But we prayed. We prayed in faith and earnestly, believing that God could and would be there for us. After the car crash, I knew it.
All I could hope for was for things to happen according to His will. The scary part was in not knowing what His will was, as far as my healing was concerned. For that I can only blame myself, for not staying as close to Him as I could have. But I thank Him that even when we don’t treat Him as we should, when we pull or drift away, He’s always there when we turn back to Him.
The treatments lasted six weeks, my recovery took over a year. There were other struggles during that time as well. We were financially wiped out as insurance benefits were limited. It seemed as though every new bill began a new battle with the insurance company. We hadn’t had much to begin with, we had nothing after about six months. My wife worked a few hours a week for minimum wage in a small general store nearby. Several times the only reason we ate was because God sent an angel to our doorstep. At one point Luann and I lived on water for three days in order to give the food we had left to the boys, until she got paid.
I just want to make a simple point here.
When you choose to have children, it often means sacrifice. Not usually to that extent (thank God), but I often see people whose children go without proper clothes or medical care while the parents spend $6 a day on cigarettes, or $50 or more to have their nails or hair done. I see many who don’t spend an hour a day talking to their kids, but treat themselves to a weekly night out because ‘they deserve it’. Well, maybe they do. But not at the expense of their children. I’ve often thought I deserved things that I never got. On the flip side, I have to admit that there were times when I was pretty happy that I didn’t get what I truly deserved.
You have heard me talk about the ways in which God gleans good from the worst situations. About eight months after my treatments, I was still not strong enough to work. I was, however, strong enough to be feeling penned in, bored out of my wits and driving my wife crazy. I began to do volunteer work that eventually led me to teach First Aid classes, and help with volunteer First Aid stations at public events. I enjoyed it, and thought how nice it would be to do this and actually get paid for it. But in Wisconsin at the time, school wasn’t available.
On the verge of losing our home, we put our last $20 in the gas tank and came to Illinois, where my father had a friend who needed a tow truck driver. A service call for a local paramedic whose car wouldn’t start opened the door to a conversation that led me to EMT (Emergency Medical Technician) school, which led to the fire department, which led to paramedic school, and now nursing. The teaching part has continued also at many levels, and that has a huge part in preparing me for the ministry path I’m currently pursuing. Sort of a convoluted way to switch career tracks, isn’t it?
A few years ago, while in nursing school, I had occasion to write a research paper on Hodgkin’s Disease. I figured it would be a good way to get up to date for myself as well, as I hadn’t been following things as closely as I had in the past. As I read the recent information and research, I learned that the “5 year cure” rate is still between 90 and 95 percent. It’s about the same at ten years as well. But, the 20-year survival rate plunges to 60 percent for those who were treated with Cobalt 60.
These Cobalt 60 patients are dying in their mid-to-late 40s, many of them without warning. Surprisingly, they are not dying from recurrent Hodgkin’s Disease, but from secondary cancers and mediastinal (heart and lung) damage caused by the radiation. Indeed, I learned about a year ago (after failing a cardiac stress test) that I now have a defect in a main coronary artery which is causing a partial blockage. Hearing this, many people tell me that I’d have been better off without the therapy. Thankfully, I was given a huge object lesson that helps me to keep things in the proper perspective.
About a year after I finished my treatments, some close friends called and began asking me questions—about the disease , the treatments, and the side effects. It seems they had another friend who had just been diagnosed with Hodgkin’s. He was my age, my height and weight, and otherwise healthy. We even did the same type of work. His disease was found in the same area, at the same stage and with the same symptoms as mine. My friends said that we even looked a little bit like each other. His biggest concern was whether I had lost my hair with the treatments. I had, wherever the radiation had hit (it made for a really strange hair style for a while). Because of that, he chose not to have the therapy.
He was dead in less than 8 months.
I learned a lot through this trial. I now know that the path I am on is the right one. I often think of the lives I’ve touched through the years. Each one has a story of its own, and each one touches so many others. How many lives would have been different had I not taken the treatments?
I called this chapter ‘The Cancer Story’. Now that it is written, I’m not sure that I’ve named it appropriately. Oh, it is about cancer. But more than that, it’s a story of fear, of doubt and uncertainty. Of desperation and depression. In fact, there were only a few things that brought me through this time. First, I had the Gift of the Car Crash, which removed a lot of doubt that may have been there otherwise. At least I knew that God was real, that He would be there with me no matter what. Second, I had a loving wife and two sons who never left my side. Luann and I spent just about all day, every day, together while I was sick, and our marriage was never stronger.
I did lose some friendships, but found some new ones. I learned, once again, what things were truly important, and what things weren’t. So you see, it’s also a story of growth, of healing. A story of hope.