I was diagnosed in mid-December with Ewing's Sarcoma after a bought of Bronchitis that turned into Pneumonia that seemed to suggest I had a cyst on my lung that was actually a rare form of cancer that typically affects children. This thing is a killer. It has a shitty mortality rate. It's aggressive and brutal and mean. It's a fucker. They figured it all out while I was on the operating table about to have said cyst removed, and when they woke me up they said they weren't taking anything out. They said it was most likely cancer at which time I told the nurse to hit me with some more narcotics while swooning under the haze of anesthesia. I figured it might be best to get drugged up while I processed having the Big C.
The biopsy came up Ewing's. That's a pretty rare one. My variant is even more rare than most apparently. It's highly likely that I'm one of the only folks in the country to have my particular "brand" of Ewing's Sarcoma. A bit about ES: In children it typically hits in the brain and the spine and until the last ten years or so, they really didn't have a great way to treat this thing. It's a bone cancer. In adults I've been told that it beings in the leg and then spreads quickly. They used to just cut these things out, no chemo. That treatment method combined with its prevalence in children who do not have fully developed immune systems yielded the high mortality rate. If you just cut this fucker out, it grows back like a Hydra. You have to resist the urge to cut. You have to go a slower road. Chemotherapy with radiation chaser and maybe... just maybe... you cut later. I have stage four cancer. That means it spread a lot. That's a scary thing to think about. When you say stage four cancer, folks assume you are already dead. I suppose if I wasn't Doc Terror that would be a scary prognosis, but I don't believe in labels and to me, stage four means that I have several battlegrounds on which to fight. Hell, these giant tumors took less than a year to grow into doctor scaring size (though not the biggest anyone's seen by any stretch of the imagination). Also, when my friends and family started Googling this thing, they would respond with tears or immediate phone calls. Things did not look good.
1. I do not have cancer IN my lung or in any major organ nor is it my bone marrow.
2. It was in my pelvic area and lymph nodes but was told that Ewing's actually spreads via the blood stream. It road up my right side, starting in my leg and eventually moving into my pleural cavity around my lung.
3. I had had a very large lump in my leg that hurt often but inconsistently. I thought this was a muscle pull from working out. I was wrong.
4. Chemotherapy is a chemical treatment either oral or IV that puts toxic chemicals into your body to kill the cancer and shrink tumors. It kills more than just cancer cells.
5. Radiation is controlled, aimed radiation that kills cancer using... radiation. It is different than chemotherapy. You'd be surprised at how folks think chemo and radiation are the same thing just due to lack of familiarity.
Chemotherapy for me consists of two different alternating rounds. An A round and a B round. My A round consists of one med nicknamed THE RED DEVIL. This stuff is bad for my heart and I can only get 5 lifetime doses along side two other meds that are given to me via IV. That's in outpatient procedure. I go in for 5 hours, get steroids, anti-nausea meds and three separate medications. The B round consists of two different meds. One of these drugs can cause my bladder to bleed so I have to be a on a 24 hour Mesna drip that prevents this. It means that the B round is done inpatient. 5 days in the hospital with an extra night at the end to finish up the last bag of Mesna to protect me.
THE SIDE EFFECTS
After each round I feel nauseous. I get tired. I experience pain in my leg that requires medicine. My immune system takes a shit about seven days post-chemo. I have no white blood cells for a time. If I get sick, I'm going to the hospital. Luckily that hasn't happened yet. At first those side effects were much worse, but over time I've gotten used to them. I try not to complain about them. One side effect is that I lost my hair. I've been told by many that I have a good head for being bald. I've grown to like the look. Everyone kind of knows that you can lose your hair, but did you know that can you lose all your body hair? I'm like a pre-adolescent boy. You lose your eyelashes. You lose your eyebrows. You lose your nose hair. You learn very quickly what all this body hair does. I also lost weight. Fast. It was scary. Thankfully the diet of milkshakes my doc put me on worked perfectly. I have become quite the connoisseur of root beer floats. They may have saved me. I've been told I'm sterile for now. So there are clearly perks. It's funny until you are staring at pictures of Edwige Fenech and the mechanics of your body aren't working as expected. That may be a little vulgar, but the cancer is more vulgar. Your tastes buds get all kinds of messed up. You can only eat certain foods and smells are completely distorted. For a time there I could only drink Mountain Dew and eat McDonald's Chick McNuggets. For those of you who slam either one of those things, I'm telling you it was medicinal and perhaps life saving.
After four rounds, we did a new CT scan. We learned that all my tumors have shrunk by a little less or more than half depending on which tumor we're talking about. You have to know something. Every time the doctors talk about my tumors, they start talking low and slow and sad. I have very large tumors apparently or had very large tumors or still have large tumors but have significantly smaller, large tumors now. I get the feeling like they didn't expect this treatment to work nearly as well as it did, and it only occurred to me recently that folks thought I was going to die back in December. I didn't. Death is not what I do. It's not my time. I have three little girls and a wife at home, and they need me. So I can't die. That's not an option. I also have soooo many Horror movies to see still. I have a giallo challenge to complete!
Some of you comment that my attitude is overwhelmingly positive or outstanding, that you admire it. All I can tell you is this. You beat cancer with your mind. The doctors use drugs that shrink tumors or carve them out or kill the cells with radiation. This is the DOCTOR killing the cancer, but YOU are responsible for actually winning the fight against the damn thing. If the medicines don't work, you find new medicines. If the cancer comes back post-surgery, the doctor will try something different. If the radiation isn't working, try anything the docs will allow, but until you get into your head that you decide how much you can take. You decide how you react to treatments. If there's pain, you take the pill or the injection and you don't say a damn word. You fight it. You are a warrior. You decide how you react to the negativity of other cancer patients, friends, family... you decide not to be a victim. You decide you are a goddamn warrior ready to murder a tumor. You are not afraid of the cancer. The cancer hurts because it is trying to run away from you, and it can't get off your bone to escape your teeth. I am positive because I am a warrior, and this is my quest. At the end, the spoils of this war will be a long life with the ones I love and a life committed to helping others get through this shit in the same way I am getting through it now.
I have two movies with quotes that echo through my head:
1. "I was thinking about death and all. About seeing how you're gonna die. I mean, on one hand, if dying was all you thought about, it could kind of screw you up. But it could kind of help you, couldn't it? Because you'd know that everything else you can survive." from Big Fish has always been an important line for me, but the line I quote to everyone who asks is, "People needn't worry so much. It's not my time yet. This is not how I go."
2. From Predator:
Poncho: You're bleeding, man. You're hit.and
Blain: I ain't got time to bleed.
Blain: Bunch of slack-jawed faggots around here. This stuff will make you a god damned sexual Tyrannosaurus, just like me.The first one is obvious. In my mind's eye I have seen myself live to dance with all my daughters at their weddings. I have lived long enough to see my grandchildren. I have seen myself as an old man. I do not die from cancer. I live a nice long life, and this more of a test than anything. This is a bump in road, and even though I know none of you really believe that I believe that, I do. I am Albert Finney in Big Fish or will be him one day. A man who takes a bath because he's drying up.
The second two quotes comes from the warrior. I go to work. I do not take days off needlessly. I try to keep my life as normal as possible. Do what I can do. Do not let cancer be an excuse for anything unless it is medically detrimental to do so. I ain't got time for cancer to kill me, and that terrifies the cancer because I never let up on it. I do not skip chemo treatments. I will not skip radiation treatments and if the doc wants to cut these suckers out, I'll make the first slice.
The second quote from Predator (with insensitive profanity included) is how I think of the chemo as it goes in my body. The chemo is my super soldier serum. It beats out your Viagra. It beats your Yohimbe. That damn IV poll is my cockring!
THE NEXT STEP
So where are we now? We are a few more chemo treatments beyond my first follow up scan with a third chemo treatment coming Monday. I await a back to back inpatient treatment at the end of April and beginning of May complete with a radiation treatment beginning April 26th with five weeks of radiation to follow just on my leg for now. I feel the tumors shrinking in leg and pelvis. The leg still hurts and sometimes the pelvic tumor causes strange back pains, but I handle it. I can breath. I have stopped coughing but there's tightness when I inhale deeply still. I still take my pain meds and will do so until the pain stops. It's easier to battle when you don't have to worry about being in constant physical pain. I can move. I can walk. I can lift. I can play with my kids and do the dishes and not sleep all the time. I feel almost normal in many ways except when the chemo after effects takeover for a week.
I'm not a machine guys. I have down days, but you most likely won't know it. My inpatient treatment is like being in a torture chamber or prison. I miss my family desperately during that period. I get weepy. I miss my kids. I miss my wife. The food in the hospital is the worst thing I have ever tasted. The smell of the hospital makes me sick and things that smell like the hospital make me sick to my stomach when I get out. I have always been a guy with an overactive imagination and sometimes that gets the better of me, fantasizing about the worst case scenarios. All of these moments are temporary. I can conquer them all, and a great deal of that I owe to my army of friends and family who support me endlessly and tirelessly. You are my life. You make this possible. We fight together. I feed off your energy...your prayer and good vibes or positive comments. It truly helps. If you see me making jokes about my cancer or making light of my treatments, it's because I want to take the power away from it. It only has the power we give it to survive.
THE FUND ME
Recently my buddy Danny Mozz started up a Go Fund Me campaign for my family. He had a son with cancer and knows exactly what we can expect for this disease both emotionally and financially. We had no idea it would be as successful as it has been. My family and I thank you. Danny and his amazing family thank you. We thank each other because we are all part of this team, doing our part and getting me better every day. We are a unit. The tumors are scared to shrinking.
You can contribute to the campaign HERE. We will most likely be keeping it open through April and while the campaign has a goal set because the Go Fund Me site makes you set a goal, it's an arbitrary number. I'd like to think I'll be fighting this thing for the rest of 2016 but I have no idea how this will play out. We know that folks have wanted a way to help out in some way and that this a way that everyone can be a part of the effort. If you can't help financially, spread the word or just let me know your thinking about us.
MY UNDYING GRATITUDE AND APPRECIATION TO YOU ALL
To my wife Nicole, Danny described our relationship in the campaign as one that is like a cute high school romance. I expect you to go to the prom with me every year, and I am so grateful that I have you by my side. We have a long life together, and I promise we'll get you some place tropical once this thing is over. You deserve the best Pina Colada and lots of sun with warm water and plenty of smoked meats!
DON'T BE A STRANGER
If you have questions about this damn thing in anyway please ask. Either in the comments below or on Facebook or in private at firstname.lastname@example.org. I'm an open book for you. I will gladly answer anything no matter how personal. This will not be the last update, but I wanted to give you the story so far in as much detail as I could. I hope I didn't leave anything out.
*My Cancer Year is borrowed from the comic by Harvey Pekar. I watched American Splendor quite a bit during my early days of treatment. I also recommend Terminally Illin, a comic book about Ewing's Sarcoma.