Illness Narrative: Eric’s Story

Eric's Journal
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It begins…again

By: Dawn Dent with Eric McLean

Foreword

The following narrative of what my ex-boyfriend (whom I’m still very close to) went through during the course of his leukemia was an irreplaceable lesson learned for Eric and everyone close to him at the time, including myself.  What we learned during the entire ordeal is carried with us today—it makes us who we are now.

It was during this Medical Anthropology class, that I drew connections with Eric’s experience to what we’ve talked about.  For example, Eric was the typical patient in a biomedical view. His body was manipulated by the doctors and, consequently, the drugs, to fight off his disease.  The doctors also performed their role, using what they’ve been told works for leukemia and administering it with confidence. Eric, like many Americans who subscribe to the biomedical model, took the drugs with nearly 100% confidence in his doctors.  After all, they knew what they were doing just by the very nature of being a doctor—who would question them? Fortunately, Eric’s doctors were amazing, and got him through his leukemia and into remission. Some aren’t so lucky.

Another example of Eric’s experience that ties up with class was how Eric believed that the mind has the incredible power to affect how the body reacts.  Eric confidently asserted that without the emotional support from everyone around him, he definitely wouldn’t have done so well. The notion of the “mindful body” and how the mind and body interact to affect one’s disease and sickness runs throughout Eric’s story.  In fact, I’m sure one would be hard pressed to find an illness narrative where this doesn’t come out in some way.

Eric’s story of finding out that he has leukemia to being treated to entering remission is a powerful one.  As a young man of only 19 years old, he has gone through more than many do in an entire lifetime—Eric has realized the many keys to living a happy, healthy life making him an extraordinarily grateful man today.  

“You Have Leukemia”

“He has leukemia.”  Those were the three words that changed mine and Eric’s life forever.  Those three words were loaded—nothing could prepare either of us for what laid ahead.  We were high school sweethearts; he had just finished his freshman year of college, and I had just finished my senior year of high school.  I had planned on going to the same university as he did and we were both looking forward to spending more time together. However, as those devastating words vibrated throughout my entire body, I knew things weren’t going to be as we had so idyllically expected—for either of us.

Eric had just finished his first year of college and along with the typical experiences that a freshman goes through.  He was subjected to his first beer bong, getting completely drunk for the first time. I remember him calling me confessing his undying love for me in a slurred, barely noticeable voice.  Eric had also joined the rugby team, playing one of the most brutal games any man or woman should ever be allowed to. During the games at least one of his teammates would end up being rushed to the emergency room as a very visible bone protruded from his arm.  Of course, being the stereotypical girlfriend (and female!) I worried that one day he would be the one being rushed off to the hospital. Neither of us had any way of knowing that, yes, Eric would be rushed off to the hospital—but under very different circumstances.  

After Eric came home for the summer after his freshman year in college, we immediately made plans to go skydiving.  We called several places, looking for the best deals and also companies who had the least amount of deaths. Finally, we settled on one company out of Green Bay and made a date.  However, soon after Eric had quickly developed toothaches on both sides of his mouth. After a trip to the dentist, it was determined that he would need his wisdom teeth pulled. Unfortunately, our skydiving trip was put on hold.

When Eric returned from the dentist, his teeth were packed with blood-stained gauze and he had four open holes in his mouth.  I was there when he came through the garage door of his home and mumbled something like, “This sucks!” Over the next week or so, I visited Eric every night after work, keeping him company, getting his medications, and picking out his favorite fruit popsicles.  As time went on, however, his mother, Mary and I noticed that he was experiencing increasingly amounts of pain. When Eric returned to the dentist for a follow-up, he was told that he had dry sockets. So, Eric was given more medication and things to pack his four holes with and sent home.  A couple days later when he still wasn’t feeling better, and in fact worse, his mother took him to the dentist again. Eric explained that the pain was worse; he was passing out during showers and he felt like a semi-truck had hit him. This time the dentist said that he was dehydrated, intravenously fed him a bag of fluids and sent him home.  

By the end of the first week, I was extremely frustrated at the amount of pain Eric was feeling.  I thought to myself, “He only had his teeth pulled, why is he being such a baby.”  On his side though, it was a very different story.

Me:  How did others respond to you during this time when you were in so much    pain?

Eric:  Everyone around me was giving me a hard time.  Everyone from my family to my boss. Before I had my wisdom teeth removed, I was working 60 hours a week at a local factory.  I informed my boss that I had to take off a day or two to get the operation done. A week after I had the operation done, my boss was starting to get on my case about getting back to work.  It was extremely frustrating for me, because I was in an incredible amount of pain. I could barely stand; how was I supposed to go back to work at a factory?

At one point Eric was literally screaming in pain, tears gushing.  I immediately rushed into the bathroom to see the most agonizing face; I held him tightly trying to make him feel better and secretly wished that he would get over it already—for both of our sakes.  Trying to comfort Eric during this time was nearly impossible—the pain was unbearable. The dry sockets in his mouth were as raw and fleshy as the day his teeth were pulled. It was as if the healing process that most people go through wasn’t taking place.

Finally, a lull in his pain came one night and we decided to go to Applebee’s for a nice meal (Eric hadn’t eaten anything solid in over a week.) and then to a movie.  Eric ordered a chicken alfredo, without broccoli. He painstakingly ate what he could and we left to see a showing of the Hulk.  During the movie, Eric had increasingly gotten worse.  He began to shiver, even though he felt incredibly warm.  Also, the pain in Eric’s mouth had returned with more intensity than ever.  When I asked him if he wanted to leave he said “no” and so we sat through the rest of the movie.  After the movie I sped as fast as I could home, feeling horrible that I had forced him to go out. Once Eric got home, his mother immediately gave him some pain medication and instructed him to go lay down.  I followed him downstairs to his bedroom and lay with him until he fell asleep. As I was getting ready to leave, Mary informed me that she had enough and was taking him to the emergency room. I immediately responded with, “I’m going with.”

Anyone who knows Eric knows that he doesn’t like to visit the hospital, and especially not when he has to be woken up.  With incredible reluctance Mary and I convinced Eric out of bed and drove him to the emergency room. Once Eric was at the emergency room, his experience was, at least at first, typical of what happens when one enters the ER.  He was checked in, given a wristband with his name and date of birth printed on it, asked a series of questions, and hooked up to an IV. When the doctor came in, Eric explained his story of getting his wisdom teeth pulled, how he had been in a tremendous amount of pain since, was passing out in showers, etc.  Soon after the doctor left, a nurse came in drew a few vials of blood. The first time she poked Eric with the needle, blood spurted everywhere. It was clear that she had not been expecting that! She quickly controlled the “mistake” and continued taking his blood and left the room. About 15 minutes later, the same nurse came in again.  She explained that the machines were “off” and that she would need to take another couple vials of blood from Eric. Eric elatedly agreed, as he had been given strong pain medication intravenously. He soon passed out after the nurse left.

Another 30 minutes or so had passed before the doctor reentered Eric’s temporary room.  While Eric lay sleeping, Mary and I listened to what the doctor had to say. As he was leaning against the counter, he explained that Eric’s blood counts were off the charts.  (Right away I knew something was wrong. The doctor’s face looked extremely concerned. In addition, my best friend had bone cancer when I was in grade school, and I remember that she and her family would often talk about her blood counts.)  Then the doctor dropped the bomb—Eric had leukemia. Mary and I burst into tears, grabbing each other for comfort. Under the commotion Eric awoke confused. One glance at his mother’s and girlfriend’s face told him something was very wrong. He asked in a blurred state of mind, “What’s wrong.”  His mother broke the news. Eric asked the doctor in between sobs, “How sure are you?” The doctor replied explaining that he had made a couple other calls to specialist doctors who said with complete certainty that Eric had leukemia. When Eric received this news, he felt like his life was over.  

Me:  When you felt like your life was over, do mean like you were going to die?

Eric:  Yes, a million other thoughts go through your head…everything from, you know, what you leave behind…

Me:  Like what, people you love?

Eric:  Yeah, everything from being able to just…ugh…live—simple stuff like going for a walk.  The thing I thought about right away was I’m fricken dead,          right when you hear the “C” word.  The one thing I thought about a lot was the fact that I was just starting to become an adult and was discovering what the real world around me was about.  I describe the feeling I felt when the doctor told me that I had leukemia as a “light at the end of the tunnel…except it wasn’t my goals in life…it was an oncoming train.”  I felt completely hopeless. On the outside, I tried to put on the best face I possibly could to those around me. Everyone was trying to be as positive as they could about the situation, and I did my best to feel that way as well.  But I think deep down inside, I honestly felt like my life was at an end. I didn’t know how to prepare myself or those around me for it.

Me:  Did you question ‘why me?’

Eric:  No, I don’t know if I did.  I don’t know if that question really…well, now that I think about it, yeah, maybe I did.  Yeah, I kinda got a little resentful about it, like why couldn’t someone who already lived a full life get it.  I did feel like I was too young for it. I wouldn’t have wanted another 19 year old in my shoes.

After Eric received the news that he had leukemia, he was immediately put in an ambulance and driven down to Milwaukee at St. Luke’s Hospital where he would receive further treatment.  I drove with him and the entire time, neither of us said a word. I held his hand and silently cried the entire hour and a half drive. His mother was going to meet us there with Eric’s clothes.

Early the next morning, Eric was bombarded with doctors and nurses who took down his medical history and ran a million tests.  We were informed that his doctor would be Dr. Treisman. For the next day or two, Eric was constantly interrupted by a team of phlebotomists, nurses, and doctors from a variety of specialties.  When his results came back, Eric, his family, and I were informed that he had Acute Myelogenous Leukemia, also called AML. Eric would also be receiving chemotherapy right away since 60% of his blood was leukemic.    

During his first week at St. Luke’s, Eric underwent his first round of chemotherapy.  The nurses inserted a semi-permanent Pic Line in his arm for intravenous administration of all the antibiotics, pain meds, and chemo.  Eric’s family, Eric, and I all asked Dr. Treisman and the nurses a million questions.  “What chance does Eric have of the chemo putting his leukemia in remission?” “What’s the percentage of people who live through this?” “Will he lose his hair?” “What effects does the chemo have on his body?” “What happens if it doesn’t work?” “What happens when and if Eric gets to remission?” All of the people closest to Eric wanted answers to these types of questions.  We were told that his chance of living through this was 20%–not exactly the prognosis that anyone wants to hear. The nurses also said that yes, Eric would lose his hair and that the chemo could have side affects on the body’s organs.

In fact, side effects of the chemo began showing its face within a week.  The lining on Eric’s esophagus became raw. The mucus that usually lines the esophagus helps food to smoothly slide down.  Eating became an incredible chore for Eric so he stopped all together. With his breakfast and lunch came three packets of “Kanana Banana,” which were horrible tasting banana flakes.  Eric hated these things more than anything.  I remember him proclaiming, “I ain’t fucking eating that shit!”  So, Eric and I made a game out of it—we saved all the “Kanana Banana” packets, stuffing them in the bedside drawer until a nurse found them one day and told Eric that he should be eating those.  Well, he refused. Eventually, eating became so painful for Eric that he had to be fed through his Pic Line—a supplemental liquid of nutrients that cost a dollar with every drip (And, with a 1000 milliliters in one bag, that bag of nutrients cost $1000!).  

Eric, his family, and I also made a joke out of losing his hair.  It should be mentioned that Eric had “hippy” hair—it was long and slightly wavy.  We all decided that we were going to shave Eric’s hair into a mullet. So, his dad, Brian, and his brothers, Mike and Steve came into Eric’s room one day loaded with a buzzer.  They shaved Eric’s hair into one of the best looking mullets, probably since the 1980’s. To say the least, we were all able to smile and laugh for a little bit during this time when everyone was incredibly scared.  When Eric did start to lose his hair, it came out in clumps. He would wake up and his pillow would be covers in hair. Finally, Eric decided that he didn’t want to deal with that, so Brian just shaved it all off. Eric was officially bald!

In addition to the pain of his esophagus and losing his hair, Eric still had the pain in his mouth where the dry sockets hadn’t healed due to his leukemia.  This, of course, caused numerous infections and he had to be put on a number of antibiotics and anti-viruses. In fact, a simple infection, we were told, could kill him since his immune system wasn’t functioning properly.  

Me:  Did you ever think that this was it for you, that you were going to die?

Eric:  Um…yeah, all through St. Luke’s when all the infections, fevers, and pain wouldn’t go away, until I went into remission.  But I remember telling the doctors to give me the worse possible shit they could. I didn’t care about the pain—I just wanted them to get rid of what I had.  I felt like my body was already screwed up as it could be, so the worse thing that they could give me couldn’t be that bad. I didn’t care what it did to me.

Me:  What other emotions were you going through?

Eric:  I had a thousand emotions.  Depression was one…uh…just the feeling of hopelessness; there was nothing I could do to undo what was happening to me.  And I wasn’t even in control of being sick in the first place. I could see if I’d been smoking and was on my deathbed. I wasn’t in control of what I got and the feeling that I could die.  Yeah I had depression. I didn’t have a choice, I just had to deal with it the best I could. Also, all my friends at Whitewater, not one of my friends that I expected to visit did. I don’t know if I was angry at them or sad, probably more sad.

After three weeks of chemo, Dr. Treisman told Eric, his family, and I that the first round hadn’t gotten rid of all his leukemia.  We all broke down crying. I think we all felt that this might be it. Had we gotten the news that it had worked we would have been more optimistic—but it didn’t work.  However, Dr. Treisman told us that the chemo had gotten rid of most of his leukemic cells, which technically meant that it did work to some extent. The next step, Dr. Treisman said, would be to do it all again; same chemo regiment, since the doctors considered it a success.  Eric was given the option to start again, right away with the chemo or to go home, recover a bit, and then come back in a few weeks. Without a question, Eric went home for three weeks.

When Eric’s first round of chemo was finished, he had lost a lot of weight.  Already a tall, skinny man to begin with Eric now looked like a skeleton. In addition, he was still living with leukemia, which scared all of us.  However, everyone understood that Eric needed to recover a little bit in order for him to be strong enough to return to St. Luke’s and kick his leukemia’s ass.  So, his family, friends, and I tried to make the best of situations for Eric. It was during his birthday in July when Eric returned home.

When Mary asked Eric what he wanted for his birthday, he replied that he wanted all his friends over.  Eric’s mom, Mary, organized all of his high school friends to show up at his house for a surprise birthday party.  While everyone was arriving and gathering in the backyard, I kept Eric busy inside the house. He had no clue that over 50 people had showed up to show their support.  When I finally led Eric to the backyard to face all the friends and family that came, he broke down.

Me:  How did you feel about the birthday party?

Eric:  I remember telling my mom, she asked me what was the one thing I wanted, and that’s what I said…it was overwhelming.  [Eric couldn’t say much more, since he was emotional during this part of the interview.]

Me:  How did your dad react?  [During the party, Eric’s dad had approached Eric and gave him a highly emotional hug and said that he loved Eric.]

Eric:  My dad was affected by the whole situation more than anyone in my family.  He never used to talk to us, well not ever, but he was just really quiet. But because he thought that I might not make it, maybe he thought he might have made a mistake.  I mean, he was always a good dad, he just wasn’t as communicative until after I got sick and he didn’t show it. I know that he loved us, but he didn’t show it until after the possibility of losing one of us.  Now he talks to us all the time, I mean, he calls me all the time and we hang out.

After Eric’s relaxing stay at home, he returned to St. Luke’s for his second round of chemo.  Eric came back with incredible determination to kill all of his leukemia. I don’t think that anyone was really sure that Eric was going to beat the disease, but we all tried our best to make ourselves believe that he would.  After another couple weeks of going through the entire chemo process again—all the pain, puking, and fevers—we received the best news of our lives. Eric’s gastroenterologist was the one who informed him that he was officially in remission.  At that moment, Eric and I were the only ones in the room and we both cried and held each other with an incredible relief feeling. He called his parents and excitedly broke the amazing news. But there was another obstacle to face, perhaps the biggest one of all.

The Bone Marrow Transplant

When we asked Dr. Treisman what happens after Eric goes into remission, he told us of two options.  One was consolidation chemo which meant Eric would go to the hospital every month for a round of chemo to keep his leukemia at bay.  The other was a bone marrow transplant which, if successful, could keep his leukemia away indefinitely. However, a transplant was so much more risky—it scared everyone close to Eric; and especially me since my uncle had just passed away from a bone marrow transplant only four months before.  

Me:  Were you ever scared?

Eric:  Yeah, I remember Triesman telling me that he didn’t want me to do the transplant.  I would ask him why not, and I never got a straight answer from him. But I finally got the idea that if I got a transplant I might not live.  I remember the distinct time I got that feeling from him, like why he was so hesitant, and it definitely scared me. My dad read a book about bone marrow transplants that said 25% of people actually live after they receive it—that combined with Treisman scared me.  

Eric ended up choosing the bone marrow transplant.  Eric was transferred to Froedtert Hospital in Milwaukee and his new oncologist would be Dr. Drobyski.  Before the transplant could take place, however, Eric needed to be in great shape. Consequently, he underwent another series of testing for everything.  They did scans, making sure that his organs were all functioning properly.  When he was informed that there were spots on his lungs and that he would have to undergo a lung biopsy, everyone was upset that the transplant would be put off.  

The lung biopsy, Eric said, was the worst pain he felt—even more so than when he was at St. Luke’s.  After the lung biopsy, Eric lay in the hospital bed with a tube that had a three inch diameter sticking out of his side.  Just sitting up was extremely difficult for Eric. He would cry in pain like I never heard before. I remember wishing how if I could, I would take away all his pain.  The feeling of compassion, of being in a room with someone in that amount of pain, was almost unbearable—all you want to do is take the pain away, but you can’t. Within a week or so, Eric was up and moving and was sent home with good news that the spots on his lungs weren’t anything.  Also, he was informed that his health was good enough to withstand a bone marrow transplant.

It was determined that Eric’s brother, Mike, who was two years older than Eric, was going to be Eric’s bone marrow donor.  Mike’s blood was almost identical to Eric’s which improved Eric’s chance for a successful transplant. The date was set up for Eric to undergo his transplant—October 20, 2003.  

Before the transplant, however, Eric had to go through another round of chemo to kill all of his cells.  During a bone marrow transplant, Eric’s blood cells would be completely replaced with Mike’s. In order to accomplish this, the chemo had to kill all of Eric’s malfunctioning cells.  And so, Eric went through the process of receiving chemo again. Throwing up was a daily part of Eric’s life, more so than when he had chemo at St. Luke’s. But that wasn’t the worse of it according to Eric.

Me:  What were your emotions during the transplant?

Eric:  I was more bored than I have ever been in my entire life.  Boredom was worse than the pain…drove me crazy sometimes. I was by myself more at Froedtert than I was at St. Luke’s.  

Me:  Did you ever realize that you weren’t going to die?

Eric:  I don’t know if I really ever knew that I wasn’t going to die.  I never just knew that I was going to live, but just the fear of knowing that I might die subsided.  I wanted to go back to school and get back to reality. The reality of it was, I was basically done with the next year of my life.  I knew that the next year of my life was going to be bubble-like. You’re stripped of all the freedoms that anyone has, you just can’t do it.  

After Eric received Mike’s tiny plastic bag of blood, which was essentially the transplant, everything fell into place.  He didn’t have any complications like many others had during their transplant. The only complication was that no one could get him to walk.  The nurses wanted to get him out of bed and get a bit of exercise, but he refused. However, sometimes, the “Squirrel Lady” would stop by Eric’s room and guilt him into walking with her.  The “Squirrel Lady” was a middle aged woman who also had a bone marrow transplant. We gave her the name “Squirrel Lady” because she had saved a squirrel when it was a baby and raised it as a pet for a number of years!  Often times, when I visited Eric I would find him talking to the “Squirrel Lady,” sharing their stories of their treatment or of the nasty food that was brought up to them for lunch.

Within two weeks of Eric’s transplant he was given permission to go home, but with the condition that he had to stay in Milwaukee for three months just in case something should happen.  Also, he would need to check in several times a week to make sure everything was going as planned. So, Eric’s family rented a family member’s home during the winter of 2003 and 2004 and made it into his new, temporary home.  

After Eric received his transplant he was told that he had a completely new immune system—a cold could kill him.  The doctors and nurses also firmly reiterated that he couldn’t eat certain foods—foods that could have bacteria, and especially not fast food where germs are extremely prevalent.  In addition, if he was going to go out in public, he needed to wear a mask. Being exposed to other people meant being exposed to their sickness, and if he got sick, he may not be able to recover from it.  

Me:  How did you feel after the transplant?

Eric:  The one thing I wanted the most was to go back to school.  Just knowing that there was no way I could go back was depressing.  Everyone else was having fun and doing things that normal 19 year olds do; it really depressed me and knowing that I couldn’t even get a fucking oriental chicken salad at Applebee’s.  Oh and the masks, that could be a whole five pages itself. You come to know what it’s like to be really fat or to have a facial deformity. The one thing that really stuck out in my head was when I went to the mall with [a friend].  I remember some parents shielded their kids from me, took a different turn than normal. I just wanted to start a fight with all of them. People could be cruel—if they had known what I was going through. I guess it would be hell to be 400 pounds because I bet everyone looks.  That must be emotionally killer to deal with everyday of your life. I got a little taste of that when I had to wear a mask all over the place. People could be cruel, that was one thing I learned. I never really understood the full scope of you know, what people who are “abnormal”—whatever abnormal would be—would have to go through everyday.  I never knew what that felt like until I had to do that…yeah, it pissed me off.

Me:  What other things did you learn from your entire experience?

Eric:  Value your health.  I remember the reason I went to the mall was because I wanted to do something that normal people do because I couldn’t do things they could.  Just simple things—things that the normal person takes for granted everyday…like when it was nice the other day, I could appreciate it more than others I think.  Just taking a deep breath of fresh air and I remembered everything [from when I was sick]. No one really thinks that that could be taken away from them until it is taken away.  Only once it’s taken away from you do you really value it. It’s kind of sad. I was resentful at common people. This was the main thing I could rant for an hour for if I wanted to.  Your average person takes good health for granted. If you were to give someone three wishes, good health would only be the answer in 3% of the people. If you don’t have good health you don’t have anything.  I also didn’t hold any grudges against anyone. Maybe because I was so close to dying that I realized that kind of shit is stupid and petty. Like, why be mad [at someone], there’s no point.

Me:  How do you think you got through your leukemia?

Eric:  I really put 99% of my trust in my doctors and medicine.  I never doubted the doctors. I believed in the medicine more than anything.  I could get into the emotional stuff. I think that someone else without the emotional support could still make it through, but not nearly as well as I did.  If you weren’t there or if my parents weren’t there, I think that I would have been depressed as all hell doing it by myself. I do believe that the brain has that kind of power. If you are really depressed I think you’re not as likely to make it.  

Eric continued to be the model post-bone marrow transplant patient even months and years after.  Not once did he have a complication after the transplant. And even more remarkable was the fact that his leukemia never came back.  He continued to visit the Dr. Drobyski every couple weeks, which changed into every couple months, and now to every year. Almost four years after his diagnosis, Eric is still in remission—hoping to get to the five year mark which, in medical terms, means he’s “cured.”  Undoubtedly, Eric’s experience with leukemia has changed his life in immeasurable ways.

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