Well, this is it. Today is December 24th, 2008. I woke up this morning and got in the shower. I was in the exact same place I was 365 days ago when I received that phone call described in my previous entry. It is hard to believe that it’s already been a year. As I stood in the shower, it felt like it happened just yesterday.
I guess for the format of this entry, I’m going to try to recall the past year in as efficient of a summary as I can. I will scatter the questions that you asked me throughout the blog with my answers below them. I’ll be leaving names out.
So…where did I leave off last time? Oh yeah, my father and I getting into his truck to head down to Froedtert. I had always envisioned myself, if I were to ever relapse, that I was just going to start walking or running somewhere. I wasn’t planning on telling anyone where I was going or what had happened (that I relapsed). I just figured I’d keep walking and walking, and in doing that I’d be able to clear my head or whatever with all the shit that I would be thinking about. But that’s not how it went down. I was feeling like ass, there was snow everywhere, it was Christmas Eve and I had to get down to Froedtert to start all over again.
On the ride down, we were both very silent. I had a bazillion things running through my mind and my dad did as well. Somewhere around Manitowoc, on I-43, I sent out a mass text to a handful of my friends informing them of what was going down. I got a few phone calls back, but only answered a couple of them. I wasn’t in the mood to talk to anyone at the time. It was Christmas Eve; my mom stayed home with my sister, who was ill, and to deliver the news to my brothers and plan what to the next day, Christmas. We had been through this once, so we all knew what to expect. There was no rush for anyone but me, to get to Froedtert.
Q: The first time you had leukemia was your attitude as positive and hopeful, or did you have a harder time accepting your diagnosis?
A: The first time around was really hard for me. At that time, I was asking myself all kinds of questions: Why me? How did I deserve this? …etc. I was extremely emotionally and mentally stressed out during that phase in my life, that without Dawn, I don’t know what I would have done. This is a good introduction into another thing that has been on my mind. Everyone that talks to me always says, “You’re good to go now, Eric…Your cancer will never come back again….If it does, you’ll kick its ass!” And that kind of optimism is great and all and I think it helps a lot, but I’m much more of a realist now that I have relapsed. I feel much more vulnerable. The truth is, I don’t know if my cancer will come back or not. I don’t know if I will be able to beat it back a third time. There’s a chance that it will come back…and even the chance that I won’t make it through! But people don’t want to hear or believe that. They just want to paint the perfect picture in every scenario…and that’s just not realistic.
Q: Which was worse for you? Finding out you had leukemia the first time or the second time.
A: Definitely the second time. The first time there were so many unanswered questions. None of us knew anything about leukemia. We didn’t know what the treatments were. We didn’t know what the percentages were (as far as success rates and such). The “not knowing” part is what made the first time easier. The second time, I knew everything. I knew what was about to happen to me. I knew what my chances were…and I knew that since this was my second time going through this, those chances were worse.
Q: If you relapsed, and knew you had limited time, would you spend that in the hospital getting chemo to try and buy yourself some time, or would you want to go home and spend the rest of your life with family? Reason I ask this one, is I know a family who is going through that decision right now.
A: If I had relapsed, and knew that it was truly terminal and that I would be spending my last days in the hospital, then I’d bust out and try to live my last days as enjoyable as possible. I’d probably create a video autobiography and talk about all kinds of shit…about my friends, family, experiences, and my life basically. Always thought something like that would go over well at my funeral or something. Other than that, I don’t know exactly what I would do. My friend Jason, who passed away this summer, died in the hospital. He was so incapacitated that there is no way he’d have been able to do anything. He was in a lot of pain and his lungs were totally nonfunctional. I wish he would have been able to spend his last days out on his lake where he absolutely loved to go fishing with his grandpa, brother, and cousin.
When I got to the hospital they already had orders to get my central line placed in my chest. Within an hour, I had tubes sticking out of my chest and was receiving antibiotics to control my infections. It wasn’t exactly my favorite place to be to spend Christmas, but it was going to have to be. My family all came down to spend the holiday with me, except for Lindsey, because she had some nasty viral infection going on.
Q: Do you ever wish that you didn’t go to the doctor on Christmas Eve? I know you said once you can’t eat chicken alfredo anymore, even though it was one of your favorite foods, because the day you were diagnosed you were eating it. Does this wreck your holidays at all? Or does it make them more special? What are some other things that you can’t do anymore (like the alfredo thing)
A: First off, I didn’t want to go to the doctor. There was a piece of me that believed that my cancer had come back. I was in an extreme state of denial, and I did not want to believe that it was all happening to me again. If I hadn’t gone to the doctor, there’s a good chance I wouldn’t be here today. AML comes on so rapidly that if you don’t catch it in time your chances plummet with each day that passes without treatment. And no, this doesn’t really affect the way I feel about holidays, like the alfredo that night. If anything, yeah I think it makes them more special. I know Christmas this year is going to be a unique one. I can’t really think of anything besides the alfredo that I can’t do or eat anymore. However, I think I have eaten more cheesecake in the past 12 months than I have in my entire life. Note to self: Don’t tell anyone you really love something because then that’s what everyone will give you. So it might be awhile before I can eat cheesecake…but that is for different reasons.
Over the next week or so, a lot of people were coming in to visit me. Some people showed up that I hadn’t expected to see at all. The amount of support I was already getting was truly amazing. It helped me out a lot, and it is something that I will never forget.
Well, very soon they were going to start my high dose chemotherapy, and knowing that I could now have children…something had to be done.
Q: The chemo treatments from the first battle with leukemia amazingly did NOT ultimately leave you sterile and you ‘banked some of your men’ before your treatments the second time around, do you plan on using them? Have your feelings about having a family changed because of the leukemia? (Like, are you going to wait a certain number of years without relapsing? Or do you want to have kids sooner than you would have previously planned, just in case the cancer would return? Or don’t you want to have kids at all in case something would happen to you?)
A: Wow…good question. This one has really gotten me thinking for the past couple of days now, which is why I haven’t responded to your email yet. If I were normal, I’d say that in 5 years I’d like to have at least one child that I could call my own…girl or boy, doesn’t matter to me; although, a little Eric running around would be pretty kickass. After my first transplant, I got tested and was told that I was not able to have kids ever again. About a year later, I decided to get tested again, at the advice of my doctor…and sure enough…there was some movement under the microscope! After I heard that, all I could think about was that the possibility of having my own kids was back and I knew I wanted that so much; I never thought about that one step further. I never really thought about the “what if” factor until the question was brought to my attention. And honestly, I don’t know what to do now. On one hand, I really want to be able to call my children truly mine. But on the other, what happens if I relapse and don’t make it. That is a very real possibility. I don’t know if I could handle knowing that I’d be leaving my children fatherless. Maybe I’m a perfect candidate for marrying a single mother or something…I don’t know. This is definitely something that I will be thinking about for years to come…and something that I will have to discuss in great depth with my significant other when that time comes. So in 5 years do I see myself with a child or two? I guess I don’t know.
Q: After taking so many meds, can you still have children some day?
A: The medications that I took, didn’t take away my ability to have children. Other people have brought up this question and it’s really got me thinking a lot about the topic. But no, I cannot have kids anymore. The intensity of the chemotherapy and radiation this time were far too great to ever be able to have children. Thankfully, they gave me the opportunity to bank before I began my treatment this time. Not sure if you remember reading this, but the first time I had this, they did not give me warning that I would not be able to have children after the chemo. Therefore, nothing was banked. After my treatment, I got tested because I suspected that I was now sterile and needed to be sure. They told me that I’d never be able to have kids again. This was sometime in 2004. Then sometime in 2005 I went back to the fertility clinic to get tested again just to be absolutely sure that I was unable to have kids. Much to everyone’s surprise, there was some movement under the microscope. So I made damn sure that before I began treatment this time that I banked. I was going to have extremely severe chemo and radiation and there was no way it was going to come back this time.
So the chemotherapy resumed and I started feeling worse and worse each day. My blood counts were all bottoming out, and I was still being bombarded with antivirals, antibiotics, and antifungals.
Q: If you could give anyone, who is going through what you have, and are going through any piece of advice, what would it be?
A: Take warm/hot showers every chance you get. Nothing made me feel more relaxed and at ease than a nice hot shower in the middle of the day. It seemed to be one of the only things, besides the narcotics, that would wash away a lot of the crap that I was feeling. There were many days where I’d be feeling absolutely horrible in combination with being EXTREMELY bored…so I’d strip down to nothing and sit in the shower for awhile. Be careful though, if they don’t have a shower bench for you to sit on, then I do not advise this activity. I passed out pretty much every time I’d take a shower or very shortly afterwards. If my mom was over or something she would constantly be knocking on the door to make sure I was okay. I think she had to carry my ass out of the bathroom a couple of times because I was very unresponsive. But usually when I’d start to get dizzy and start blacking out, I’d shut the water off, dry off as quickly as possible, and stumble towards my bed. I know that is kind of a corny answer, but really everyone handles their cancer differently. The most important thing to do is find whatever it is that helps you the most and focus on it. Physically, mine was taking showers. I also kept my online blog/journal…that helped a lot too.
Throughout my first month of chemotherapy, I was in talks with my team of doctors as they were trying to figure out what they were going to do after I achieved remission. None of them were really certain what to do, because there wasn’t any data out there with 19-24 year olds relapsing after 4.5 years. For most patients, they have tons of data that they can look at to determine which treatment regimen to use to give that patient the best possible outcome. I was somewhat of an anomaly. I hadn’t gotten any graft versus host disease (GVHD) after my first transplant, I was young, and I was in remission for almost five years. There are probably only a very small handful of people that had a similar diagnosis that met the criteria. There just wasn’t enough data out there for them to make an informed decision. Ultimately, they chose to hit me with high dosages of TBI (total body irradiation) and high dose chemotherapy prior to the transplant that I would be getting from my sister. They chose to use my sister as a donor this time because my brother Mike’s transplant failed after over four years.
…I just realized…I have a shitload of questions that I need to get to and this journal is going to be crazy long if I don’t start sprinkling these in here more than I am! I’m sorry if this whole thing kind of jumps around. The italicized questions and answers won’t have much to do with the storyline that I am writing throughout. Whenever one of the questions does relate to a certain point during my treatment…then I will insert that question and answer. Otherwise, I guess just try following along as best as possible.
Q: Did you already have a (formal or informal) list of “Things To Do Before I Die” or did you make one after you were diagnosed? If so, what items do you have on your list, and have you worked on checking any of them off since you were diagnosed? What would your response be to all the people that say, “Someday, I’m going to…..” but don’t follow through?
A: I didn’t make an official list. I more or less just made a conscience decision to start living my life in such a way that I would have absolutely no regrets later on. I still have some things on my “list” that need checking off, though. I had planned to go skydiving back in 2003 and had made an appointment with a place in Green Bay. Well I was scheduled to go like a couple of days before I was officially diagnosed the first time. Good thing I didn’t go eh? Once it gets warm again, I’m going to jump out of an airplane! Another thing that I am planning to do is take a trip to Europe. Whether it is by myself or with a friend, doesn’t matter to me. I’m going to go and that’s that! My response to those people that say they are going to do something, but never do…all I can say is that every day that passes and you do not take that opportunity to do something or go somewhere or whatever, it will just get more and more difficult to do it. Before you know it you’re married…then you have kids…and now all you do is work and work and work, paying off your mortgage and trying to save for retirement one day. And then all of sudden 25 years have passed and you missed some awesome chances to do some life-changing things. Who knows…maybe you’ve just gotten diagnosed with a terminal illness and now you’ll never have the chance to do those things ever again. But by then it’s already far too late and as you are laying there, you’re wishing that you had just one more chance, just one more chance to go back and maybe do some things differently; that’s called regret.
Throughout my stay at the hospital, I had a number of religious people coming in to talk to me or give me communion on a daily basis. This kind of brings me into the number of questions I had asked me about religion, Christianity, God, etc…
Q: What have been your best and worst experiences with how people responded to you?
A: The best experiences I have had with how people have responded to me is when they treated me as normal as possible. People would always try to talk to me about my illness or how I need to think or feel to beat it. My response to that is that if I want to talk about my illness or whatever then I will bring it up in the conversation. 95% of the time I didn’t want to talk about it. I guess I just figured most people really didn’t understand. I confided my deepest feelings and thoughts with only a few people. I mentioned this in a previous question…but I had chaplains and priests and other religious people coming in to talk to me on a very routine basis. And the ones that I really appreciated the most were the ones that didn’t talk about me being sick or talk about God or anything. They would come in and just try to be a friend when I needed one more than anything. They would crack jokes and sit and watch the DVD that I had been watching with me.
Q: Do you struggle with why God allows good people to suffer and die?
A: My feelings on this issue are vastly different now compared to before I had cancer. In fact, I know my opinions on this are going to probably turn off a huge chunk of my viewing population. Will some people lose respect for me because my viewpoints on God differ from theirs? …probably. But I believe that each and every one of us is entitled to believe whatever we want. I respect others’ viewpoints or opinions and don’t think any less of them, so I hope they don’t of me. Do I believe in God? Yes. Has my faith in God and what he does or doesn’t do been challenged or changed? Yes. I could probably talk a lot about this but I probably won’t in the journal just to keep it a readable length. I’ll probably be writing this thing all day today. It’ll easily be 20 single spaced pages.
Q: Did you pray a lot during your sickness? Do you feel you have a guardian angel?
A: I had chaplains and priests and such in my room all of the time to talk to me. Most of them would say a passage out of the bible and follow it up with an Our Father. However, that was the last thing I wanted to do or hear. I wasn’t at all interested in scripture or bible study or whatever. There were one or two chaplains that would come in and talk to me about random stuff. 99% of the time, God or faith or whatever would never even come up in the conversation. It was just nice to be able to talk to someone and let down all of my guard and lay every single one of my cards out on the table. I couldn’t communicate my true feelings with family or friends. Which is another reason why I was so grateful to have met Jason…this kind of segways into the second part of your question? Jason and I would talk very openly at times about our experiences and feelings about all sorts of things related to our diseases. Anything from how it impacted our families to how it affected our lifestyles. When he passed away this summer, I was devastated and will never forget him. If I didn’t have a guardian angel before, I sure believe I do now.
Q: Did you ever try to strike a bargain with God? Like, “If you help me beat this cancer, I promise I will…” And if so, have you followed through on your promise so far?
A: The God topic…I think everyone has asked me this. …And I’m still not sure I am going to include this in my journal because I will probably turn off half of my readers. But here it goes; I don’t think God has much to do with why I am still here today. I know a lot of people believe that…but I don’t think I do anymore. I believe that it was the stellar work of my doctors and medicines that kept me alive. If God is the reason why I am here, then God is also the reason why I got cancer in the first place….so what does that say about God in relationship to my cancer? It’s a sensitive topic and I know that I would take a lot of flack for writing this sort of thing and I have more thoughts on this subject, so if you would like me to expand upon it, just ask. Maybe I will include it in my journal…maybe I won’t. Not sure yet.
Q: What affect has all of this had on your views of Christianity?
A: With my relapse, I have to admit; my faith in God has been challenged, to say the least. I know a lot of people have put all of their trust in God, that He would be the one to pull me through. But, by the same token, if God is the one that was going to make me better, then is He not also the one that caused my relapse? Isn’t once enough? I’m not saying I don’t believe in God…because I do. But I wasn’t banking that God was going to be the solution to my disease. This time around, I put most of my trust in my doctors and the medicines that have been developed since 2003. So then the argument is that God created the doctors and the people to develop those medicines…so He is ultimately the one who saved me. But I told my uncle that if that’s the case then He is also the one who gave this to me a second time. His response to me was that it was his opinion that God does not give leukemia or cancer to anyone…but that under the Catholic faith that all of the disease happened because humans separated themselves from God with original sin.
Do I still believe in God? Yeah…but am I going to count on Him to keep me cancer free or help me through the bad times? I don’t think so.
I know that my answer to your question isn’t going to be very popular with a lot of people…probably including yourself. I respect everyone’s opinion and if people believe that God was the sole reason for me being here today, then they are more than entitled to believe that.
So there’s my current viewpoint/opinion about my faith. As I said earlier, I know my answers to these aren’t going to be very popular, and I understand that. I just hope that you don’t lose any respect for me because of that.
So…I had now wrapped up my first round of chemo. I was once again sporting a slick bald head, which is actually a good look for me I’ve been told. My team of doctors had decided that I would be getting a transplant from my sister, Lindsey, and I was going to need another round of chemotherapy between now and then to keep my cancer at bay. Even though I was in remission after my first round of chemo, they still wanted to do what is called a round of consolidation chemo to keep my body ready for a transplant. So I pounded down another month’s worth of chemo and drugs. However, this time after I got out of the hospital, I had other plans in mind.
I had a stem cell transplant coming up. I knew I was going to be getting very heavily irradiated. I wasn’t looking forward to it one bit. In fact, I was deathly afraid of it. So what does one do when he or she is presented with something unpleasant? They plan a road trip with two of their good high school friends to Florida!
Without telling my doctors, two friends from high school and me hit the road with a bag of clothes and some money in our pockets. It was one of the greatest vacations I had ever taken. We drove straight to Miami to a hotel on South Beach where we had made some reservations. We spent the week bumming around the beaches, restaurants, and bars of Florida. We also stopped at my grandfather’s home to visit. He and his wife were very hospitable and I thoroughly enjoyed our stay with them.
Q: When you relapsed, did you have any regrets of things you should have done during those 4 years of remission?
A: Yeah, there have been things that I would have done differently…for sure. But I’ve learned from those experiences. After this relapse, it really woke me up. When I was four or more years post transplant, I was really starting to feel like I was in the clear and that there was no way that it was ever going to come back. People that get that far, post transplant, with no relapses have something like a 2% chance of relapse. Well, when it came back, I knew that all bets were off. I assumed that things were going to go in my favor from that point on (as far as my cancer is concerned) and now I know that that just isn’t how things go.
Q: If you could go back to those four years of remission, what would you have done differently? You know, besides hang out with me more 🙂
A: Well, those four years of remission was basically me going back to college to finish up my degree. I had a full-time job when I wasn’t in class and it didn’t really allow me to be able to run off and go scuba diving or something crazy like that. Maybe I would have gone to Mexico or something on one of those crazy spring break trips or something…but for the most part…I think I did alright. Granted there were a couple of things that went down that I would have done differently, for sure, but I can’t go back in time and do them over again – so there isn’t much value in perplexing over them. The best thing I can do for myself at this point is to learn from those experiences and move on.
Q: If you were granted one wish through the Make-a-Wish program, what would it be…and you can’t say Disney world, that’s a cop-out. (Nor can you say Disney Land, Sea world, Busch gardens, Epcot center, or any other cocky answer you may have)
A: Not sure here…if it’s just a matter of getting money to do something or go somewhere, I’d LOVE to travel internationally…probably a “Eurotrip” or something of that nature.
I got back from my Florida vacation and almost immediately had to get readmitted to the hospital to begin the TBI and chemotherapy prior to the transplant process. Upon my arrival, my doctors noticed my legs extremely sunburned and began asking questions as to how the heck I got such severe sunburn in the winter in Wisconsin. J
They began the radiation and chemo and once again my body took a dive.
Q: What was your lowest point and what helped you get through it? Did you ever feel like you weren’t going to make it, or were you able to hold on to hope?
A: My lowest point… In 2003, when I was first diagnosed, I was admitted to St. Luke’s hospital in Milwaukee with 76-78% of my blood cells being leukemic. My body was incredibly overcome with infections; I had 103+ temperatures for weeks with a non-functioning immune system. Yeah, I thought I was going to die. I was almost sure of it. Seeing some of the looks in people’s faces said the exact same thing. I still don’t know how I made it through all of that. 99 out of 100 people would have been gone in days or weeks. The only thing that kept me going was that I couldn’t leave behind, my family and friends. There were times where the pain was so great that going skydiving without a parachute seemed like it would be one hell of a punctuation mark on my life.
Q: Of all the experiences associated with this entire thing which was the worst and which was the best?
A: The worst: The worst was probably in June or July of 2003 when I was in pretty bad shape. The pain was horrid, and they weren’t giving me much of anything as far as pain killers or narcotics went. There were some nights where I would only sleep an hour or so…some when I wasn’t able to sleep at all. I’d curl up in the fetal position groaning from the intense abdominal pain all day every day. I wanted it to be done at that point.
The best: I don’t remember the exact date, but it was when I was still at St. Luke’s Hospital. I went through one round of high intensity induction chemotherapy when I was first diagnosed. That probably lasted 4-5 weeks inpatient. Well, at the end of that round, they performed another bone marrow biopsy to see if I had achieved remission…if my leukemia was still present, then I would need another round of intense chemotherapy. If it was undetectable, then I could prepare for whatever the next steps in the process would be. Well, there was still a significant amount of leukemic cells floating around despite the mustard gas mixture that they pumped into my body. So I had to go through another round of chemo. At the end of the second round, they once again did a biopsy to see where I stood. I was so nervous. I can still remember how I felt. I was having severe abdominal pain at that time, so I had a doctor helping me specifically with my abdomen…he was one of the nicest and personable doctors that I’ve met to date. Well, he knew how much I wanted to be in remission and how anxious I was waiting to hear the results…so one morning he snuck in my room before anyone else and broke the news to Dawn and I that I had achieved remission. It was like the clouds had opened up and the sun was shining down on me. I felt like a million bucks. It was at that time that I started to have hope that things were going to get better and that I just might pull out of this okay. It was truly a surreal moment.
Q: When you were at your lowest, where did you get the strength to keep going?
A: You’re not the first one to ask this one…my strength really came from those that I loved the most. I’ll admit, there were times when the pain was so incredible and so intense that I seriously did not want to live anymore. Yeah I know that sounds really selfish and depressing or whatever, but it is the “honest-to-God” truth. The one thing that made me keep fighting and enduring, was that I would picture what would happen if I were to go. How would the people closest to me handle it? Could they handle it? Would they ever be able to move on? And I think for some of those people, I don’t think they would. There was no way, if I was able to do anything about it, that I was going to let that happen.
Q: Eric, was there ever a time when you just wanted to “give up”? Just say that’s enough? Who inspired you to keep going?
A: Yes, there were a few moments where I wanted to be done…done with it all. Sometimes the pain would be so overwhelming that I would often think about, if even for a moment, how this would all turn out if I were to move on. I know that sounds selfish and depressing and it’s probably not the answer that you would hear from most people… Even though I think there are a lot of people out there who tell others what they want to hear…they tell them that they are super positive 100% of the time and they never ever have negative thoughts. However, that is not the case. When I would hit those really, really low points, all I could think about were my family and Dawn. How would they react if I were to die? Would they be able to handle it? Would they be able to ever move on? And for some of them…maybe all of them…I don’t think they would be able to move on. I’d try my hardest to put myself in their shoes and in their position and view the entire situation. And that was what probably kept me going through the really hard times. I don’t think people truly realize how bad it really was. Everyone would always tell me, “Eric…you have to stay positive and know that everything is going to be okay.” And to be honest, I’d try my hardest to think that way, but that isn’t what happened behind the scenes. I’d do my best to put on a smile and be positive and tell everyone that I am doing great and feeling good…but the main reason for doing that was because I knew it wasn’t easy for them seeing me that way and that I didn’t want them to worry about me as much. I don’t know…I kind of strayed away from your question there… Don’t get me wrong, most of the time I was doing my best to be as positive as I could. But there were times when I would hit rock bottom and would have to keep on smiling.
I fought through the transplant and all of the complications that arose from that, which I’ve talked about in much greater detail throughout my journals thus far. At this point, our L.I.F.E. endeavor was growing quickly and we were really starting to bring in some serious money for cancer research. The weather was beginning to get better and Mike was intensifying his training for the Ironman that was coming up in the fall.
Q: Do you ever feel like your life is now defined by being a cancer survivor? If you meet someone new, do you want to tell them about the leukemia, or do you ever want to just pretend to be healthy?
A: No I don’t feel like my life is defined by being a cancer survivor. I know there are some people out there that turn themselves into human cancer survivor billboards and bring it up in every conversation when they meet someone new. But that isn’t me. I want to live my life as close to a “normal” person as possible. Yeah the cancer thing will come up eventually…it’s inevitable. And of course I will still advocate fundraising for cancer research and awareness and such. I like to deliver my messages to others if they are willing to listen. If they don’t like what I have to say, that is totally fine and they are more than entitled to having their own opinion. I’ll write more about this in my journal as well.
Q: Do you ever plan to give inspirational talks about your experiences and your appreciation for life?
A: I think this one was asked earlier but I will address it again. I’ve never had “plans” to do talks or speeches or whatever. If an invitation comes my way, I’ll be more than happy to talk to whoever is willing to listen. Who knows…maybe some day my high school or college will ask me to talk at a commencement or something. I think it’d be a great experience for me and for the listeners.
Q: Now that you have come so far, you have had your life flipped upside down over and over, you have a great outlook on life…knowing that you would live the rest of your life cancer free would you elect to have had this entire experience never happen or would you now choose to have lived through it?
A: I said this in the Thanksgiving post that I am thankful for getting my leukemia. But maybe only one of those times. I think one time was more than enough to change my life and make me the person I am today. I can honestly say that I would be a very different person if none of this had ever happened to me. Granted, I’d still be one of the sexiest men alive with a great personality and intellect…but there would definitely be something missing.
I know this entry is getting quite lengthy, so I apologize for that. I’ve been spending most of the day today trying to piece this together into a readable and ordered manner. It’s proving to be quite a challenge thus far. I see that already 100 of you have been to my site today to see if my journal had been posted yet or not. Sorry that it’s taken me so long.
…on with the show!
As the days went on, so did my medical bills. I was now off of my father’s insurance and I was now completely dependent on the state to help me through these tough times.
Q: How in the world can you afford your medical bills?
A: I don’t know how we’ve (my family) been able to pull through me having cancer…twice. My father’s insurance, thank God, picked up the majority of the tab during my first bout with leukemia. I also received some aid from the state of Wisconsin. I got extremely lucky because I had used up all of my father’s insurance money for life…the lucky part is that a new company bought Point Beach Nuclear Plant and in doing so, reset the insurance amount that he was entitled to…thus giving us the ability to use his insurance one more time when I relapsed. The co-pays have taken quite a toll, but I’ve also received some help from people like you! Granted, we gave most of the money we raised to the Leukemia and Lymphoma Society, but we had a handful of donors insist that the money goes to my family and our medical expenses. So that helped quite a bit. Unfortunately, you don’t realize how many more expenses add up, such as gas, food and lodging.
One thing that needs to change with our medical system is the ridiculous costs of treatments. Each transplant that I’ve had, have cost over one million dollars each. And that’s JUST the transplant. That isn’t even including all of the months that I spent in the hospitals prior to each transplant. How the heck are people who don’t have insurance able to survive if they can’t even pay for necessary treatment? So I guess my dad’s insurance company and the state of Wisconsin believe me to be worth millions of dollars! J I am very thankful for all of the help my family got from various donors around the world. I say “world” because I have close supporters on just about every continent. It’s pretty crazy!
Q: How did your mother and father manage to keep their sanity through all that they’ve gone through in the past year?
A: I asked my parents to help with this one since it directly relates to them. We have a strong love and respect for each other and for our family. We always had each other to lean on and after knowing each other for 32 years and being married for 27 of them, we could be honest and share any feelings and concerns that we had. Our faith was a comfort and guidance to where we are today. We tried to remain positive even when the chips were down; we also leaned heavily on our family and friends. We were so fortunate to have the support of so many. Just like Eric, you helped us through an incredibly difficult time. Life isn’t always fair, but it sure can be made easier with love and support. Financially we had some wonderful members of our family that were very generous and helped us with the hole we were finding ourselves in. We could never thank you enough.
Q: I know you have a lot of real life friends that supported you through your battle through leukemia, but I know you have online friends as well as other people around the world that you’ve met. Do you take into consideration their support for your cause as much as you do with the people you’ve actually met in real life? Or do you consider all your friends (in real life and online) as one?
A: Yeah I take into consideration all of the support I get from everyone that’s ever given me any. I’ve made some very amazing friends with people from around the globe. I’ve gotten long letters from people who I never even knew existed before…people that have been following my blogs for the past year and have just now revealed themselves to me. It’s honestly one of the most touching things I have ever experienced. Just knowing that I have had some sort of impact on total stranger’s lives makes me feel absolutely incredible. So thank you.
For the next few months, I pretty much stayed in my apartment in New Berlin, Wisconsin. I was severely incapacitated and could not even climb a flight of steps. My dad or mom was with my pretty much at all times helping me with everything. There were some mornings where I wasn’t even able to get out of bed on my own power. I had to be helped up and carried around at times. Eating was still a very difficult task and I was eating about an orange a day…maybe with a glass of juice. I was taking upwards of 50 or so pills every day. It was a very slow recovery.
What made that recovery even worse was the fact that Harley-Davidson was still kind of stringing me along without really giving me any sort of assurance as to whether or not my job was secured. Up until that spring they had been talking with me, telling me that my job was safe. The thought of me not having a secure job when I pulled through all of this shit (working so hard in college and fighting for my life…twice) absolutely crushed me. But they pulled through for me in the end and now I am working for one of the best companies in the Midwest.
Q: Where do you plan to be in five years? Ten years? Fifty years?
A: This is a really tough question for me. Ever since my relapse, I feel so much more vulnerable. After I went into remission after my first transplant, I was clean for almost 5 years. As I am sure you read in the journals, at that point, I had only something like a 2-5% chance of my cancer coming back. I was really starting to feel like I was in the clear and felt “normal” again. But with that relapse, all of that was completely thrown out the window. In all truthfulness, I really don’t know whether I will be here in 5, 10, or 50 years…but then again, do any of us? I guess it’s just that my chances of not being here are much greater than most other people. So I will answer this question as if I didn’t have cancer at all and I am “normal.” That way it won’t factor into the equation much.
In 5 years, I hope to be happily married to someone who makes me feel like there’s no one else on the entire planet that I’d rather spend a moment’s time with other than her. Will I have kids by then? Like I said earlier, that is something that I will have to think a lot about. People have told me to live my life like I am completely normal and healthy…but it’s not as easy as one might think. It’s proving to be quite the conundrum.
10 years…I guess I see myself still at my job…probably at Harley (I really like it there). And I don’t want to get materialistic with this answer because that isn’t very interesting and would probably end up being on everyone’s list. So I’ll mix it up a bit. In 10 years time, I want to have traveled to at least 10 foreign countries on 3 separate continents. Maybe 2.5 kids, a dog, and a white picket fence too.
In 50 years time, I hope to have so many children with grandchildren that I wouldn’t be able to count or name them all. At some point, I’d like to start up a scholarship of some sort for college aspiring students who have had cancer. In fact, now that I mention this, I will probably start a separate investment account and get that started. If I start putting away 25-50 bucks a month (very doable) in 50 years I will have enough money in there with an average interest return rate of 8% to be able to give like $22,000 every year just in interest. The fund would never run out! Also in 50 years time I want to have either built my own airplane or maybe even bought one. I love to fly and it’s something I’d love to do later in life when it is more realistically affordable. …and when I say “I love to fly” I mean that I play very realistic flight simulators and have actually flown real airplanes before.
Q: Have your views on dating and what you want in a girlfriend/wife changed after all you’ve been through? Do you look at your friendships differently now?
A: As far as girlfriends go or my ideal wife or whatever you want to call it probably hasn’t changed too much. I’ve always had the same viewpoint towards women and how I treat them and how I would like to be treated back and so forth. The only thing that might now be included in that whole equation is maybe how they feel about the whole issue. Do they care about cancer awareness and that sort of stuff? What are their feelings towards me knowing that I have what I have? Oh and for everyone’s information, I am now officially “off the market.” There is a female out there who has bought at least 51% of the Eric McLean stock and now is the Chief Executive Officer over my dating activities. If I choose to keep this journal going, I might talk about her here and there…of course with her permission. My friendships have changed a lot since I was first diagnosed…especially the way I looked at some of the friendships that I thought were a lot more solid. I kind of thought that all of my friends from college would have come to visit me during my first bout with the disease…but the truth is, very few did. It made me re-evaluate my friendships with all of those guys and if that’s the way they treat me…then how should I treat them? I don’t mean that to sound selfish, but if any of my friends were in a hospital bed with cancer, you better believe I’d be there in a heartbeat to give them my support. The ones that did come to visit me…those will be lifelong friendships that I will keep forever.
The Ironman was coming up quickly and my brother and I were doing interviews with various news stations in Madison. We did a few pieces that aired on the 6:00 and 10:00 news broadcasts in the Madison and Milwaukee network areas in the early spring and fall of this year.
Mike hammered his goal and finished the Ironman in under 12 hours. It’s absolutely crazy to think that the human body is able to endure a 2.4 mile swim, followed immediately by a 112 mile bike race, and to cap it all off…a 26.2 marathon run….which brings me to the next question…
Q: Will you ever train for an Ironman?
A: That is a great question and something which I have been talking to my older brother about for the last couple of months. Yes, I do intend to do an Ironman within the next 5-10 years maybe. So you can add that to my “where do I see myself in 5 years question.” I’m actually starting to get back into shape now and hope to race in the Whitewater triathlon this upcoming spring. I lost a large amount of muscle mass and have a very long way to go to get my body in shape for something like an Ironman. There’s no way I will even attempt something like that until I know that I can finish it. For now, I’ll start with something much smaller.
The past few months, I have just been having a good time in Milwaukee. My job has been going great and I really don’t have any complaints. I still tend to get sick pretty easily and it’s pretty common to catch me blowing my nose or coughing. I guess that’s just the nature of the beast. When you mix someone who has a crappy immune system with a bunch of people catching colds and the flu…it’s not going to go over well.
Q: Have you ever thought about going to hang out at the Children’s hospital and being a mentor to the children who are going through cancer? You know because so many of those children are scared and lost. Having someone there who understands could be a big help.
A: I never really thought about going to Children’s to try to help young children. I don’t know how well I’d be able to connect with them. I’d probably be more interested in trying to help people between the ages of like 18-30. I’d be able to talk to them about a lot more of the things that I relate to and understand. And in that respect, I’ve talked with a number of people around my age with cancer trying to give them whatever kind of help I could.
Q: Have you ever thought about writing a book? I think it’s something you should seriously consider. You could either write a traditional style book, or even just put together a collection of essays (like your journal entries), and maybe even some of these Q+A topics. Your writing style is really powerful, and you have such an amazing message. Your website reaches a lot of people, but a book could reach even more – and you could donate part of the profits to the Leukemia and Lymphoma Society.
A: I’ve had a number of people tell me that I should write a book…or maybe just try to edit my journal entries into something. I’m up around 60-65,000 words in my journals which I believe is longer than the average novel. I don’t even know how I would go about starting that kind of endeavor. Maybe I’ll write something in my journal that if anyone has any connections or tips or advice on how to go about writing a book or getting something published, that they should let me know. A friend recommended to me to seek out a co-author, which I have been unsuccessful at thus far. I don’t want just any author out there to help me write this if it were to happen. We’ll see.
So how do I wrap all of this up? I’m really not sure, to be honest! I suppose I’ll end it with a Q&A from myself!
Q: Am I going to quit writing completely?
A: I have gotten tons of feedback in a very short time about this. I have gotten responses from people I’ve never even met before. Some of those people were people that found my website just by doing a Google search and started following my journals. They were completely random and don’t know me or anyone that I know personally. In summary, I have been able to reach and get through to a large amount of people. I like to think that this blog has made some sort of difference in each of your lives. Granted, my journals only get a few hundred hits each…there are blogs out there that complain about the dumbest shit that get 100,000 hits in an hour. But I know that my words, even though read by only a fraction of that, will hold true for the rest of our lives. So how does this answer my question? Well, I’ve come to the conclusion that there are a good chunk of people who genuinely want to hear about how things are going or whatever. Thus, I have decided not to end my journals completely. What I don’t want is for my journal to turn into some kind of “reality show.” I know that phrase kind of cheapens my blogs but I wasn’t sure how else to put it. I don’t want to talk about stuff that doesn’t matter. If something significant happens or I have something important to say or whatever, then I will write something.
The bottom line is, I am feeling great now. Physically, I am doing MUCH better now than I was a year ago today. You guys have been just as supportive for me as it seems I have been for you. Even though I hardly even know some of you, I feel like you are all part of my family in some way, shape, or form. I’ve shared with all of you some of my deepest thoughts and feelings…and even a picture of my ass! Oh if you haven’t seen it, then you haven’t read all of my blogs! I can just picture about 10 of you quickly thumbing back to that bone marrow biopsy article where my rear is hanging out! J Will I miss writing on here on a fairly routine basis? I’m sure that I probably will.
This year, I am able to truly wish you all a very Merry Christmas and a Happy New Year because this is probably going to be one of the best ones I have had in my entire life.
With much love and sincere thanks,