I should probably start this blog post with a word of warning - or else it could very well be taken the wrong way or misinterpreted. I am in no way surrendering to cancer. I’m not giving up my fight. I still have a VERY strong will to live. I don’t think I’m going to just fall over dead one day in the near future.
Now, with that out of the way I can get to point of actually explaining some of my thoughts and realizations of the past month or two.
I’ve come to the realization that while I’m currently winning the battle, cancer is going to eventually win the war. Now let me explain that. Everyone tells me: “You’ll beat this thing!” or “You’re tough, you’ll get through this and live another 50+ years!” As much as I want to believe them, I know it’s not going to happen. I have metastatic Ewing’s Sarcoma in my lungs, hips, shoulder and spine. There’s no curing that. People like New York Giants linebacker Mark Herzlich (who beat Ewing’s and is cancer free) have simple localized disease - not cancer all over their body. They don’t have a chemotherapy resistant nodule in their lung. As much as I want to believe there’s a medical cure, or a higher power going to rescue me, or even a Christmas miracle in my future, realistically, it’s not going to happen.
I recently did some Googling on Ewing’s research just to see what all I could find out about the disease. I found two extensive Ewing’s studies in Europe and the U.S. (one of which listed my oncologist Dr. Ludwig as a source). One statistic said of the patients studied with metastatic Ewing’s Sarcoma - there was a 5-year survival rate of 0% from the date of diagnosis. It also said there was a 4-year survival rate of 0% from the date of diagnosis. This study was aimed directly at adults as children have a much better chance of recover. It also listed the factors which make for a poorer prognosis: metastatic disease (that’s me), metastatic disease in bone and not just lungs (that’s me), primary tumor in soft tissue rather than bone (that’s me), primary tumor greater than 8cm in size (that’s me). Basically, I hit every bad thing listed on the list. Really it’s a miracle I’ve lived 1-year and 4-months since my diagnosis. So as I said before, I’m going to keep fighting. I’m going to keep doing my chemotherapy and taking care of myself. I’m going to completely exhaust all of my options, so I can be around as long as possible. But at the end of the day, I’m probably only going to be around another 2-3 years, maybe 4 if I’m lucky. But that’s okay. The rest of you may only have 20-30 years left, or 50 if you’re lucky. Or we could all get hit by an asteroid and die tomorrow. No one knows - so there’s no point in getting all worked up about it.
The thing is, I’m okay with eventually dieing. I mean it’ll suck and I really hope it doesn’t hurt, but I’m not too worried about myself when it comes to that. I’m worried about my family - more specifically my kids. I know Hiedee, my parents, my brother, my grandparents, etc will all be extremely upset and it’ll be really hard on all of them, but they’re all adults and they understand how the world works and will eventually move on and keep living their lives. But kids don’t understand these things.
So that brings me to the thing that has really been bothering me lately. Worrying about my kids. I’m worried about Zoe, Zack and Eva - but at the end of the day, Bob (Hiedee’s ex-husband) will still be around to take care of them. So they still have their dad around to help them and give them guidance. Marlin IV on the other hand won’t have that. And that’s what really gets me upset. I’m afraid he’s going to be mad at me or blame me for not being around. I’m afraid he won’t even remember me. I always wanted to be the dad who got out in the yard and played sports with my boys or coached them in sports (the same type of dad my dad was for Kellen and I), but I’m not going to get to do that. I’m not going to get to teach the boys how to throw a football or baseball. I’m not going to get to teach the kids all of my nerdy history knowledge or goofy pop culture knowledge. I’m not going to get to take the kids all over the country on family vacations. I’m not going to get to see them be involved with school activities or sports. I’m not going to see them go off to college. I’m not going to see them get married. I’m not going to see my grand kids. And all of that is what sucks! I’d REALLY like to see and take part in all of that, but more so, I’m sure they’d love to have their dad around for it all.
So all of that was probably not what you were wanting to read. You were probably looking for something happy or cheery. I warned you at the beginning didn’t I? Just be glad it’s me and not you. You just have to read it. I am constantly thinking about it and have to live it.
Now to vent about some everyday type things that have been building up for a while and are really starting to annoy me:
#1: Question - “How much longer do you have to go to chemo?” Answer - I’m not graduating college, I’m fighting cancer. I have to go forever or until the chemo stops working and I die. Whichever comes first.
#2: Having EVERY conversation start off with: “How are you feeling?” I know people are just trying to be nice and show their concern, but when EVERY conversation you have with people starts off talking about your health it gets to be a little old. Some people truly are concerned about my health and how I’m feeling - and I thank those people, but for most people it’s just a conversation starter. I long for the days when people asked “What have you been up to?” Or “How’s it going?”
#3: People treating me like I have a disability or I’m broken. I have cancer, I’m not blind or missing an arm or something. I can do pretty much everything I did prior to getting diagnosed, with the exception of lifting really heavy boxes (can pull my CVC out). I also get winded a little easier than before. Other than that, I’m fine. I still go to work 5-days a week and then come home and help wrangle 4 kids and a wiener dog. A lot of healthy people have issues with that.
#4: Doctors not being on time. There have been times when Hiedee and I have had to wait 4+ hours past a scheduled appointment in order to be seen. It’s horrible. Yet we’ve been 10-15 minutes late for appointments and the doctor’s office calls us and asks if we plan on showing up for my appointment.
#5: People smoking at MD Anderson. You’re at a cancer hospital - resist the urge to light up a cancer stick!
