When Things Go Wrong…
and How to Rise Above the Worst of It
By Edward Douglas
January 20, 2014
BoxOfficeProphets.com
Some reading this may know me as the Weekend Warrior from ComingSoon.net, some may have known me even longer as “Shades” from the Hollywood Stock Exchange message boards… or “secret stalker” which is the handle I took when I was banned from those boards, which two years later I still am.
Not many people realize how important the Hollywood Stock Exchange has been to generating my interest in watching and writing about movies and for those who’ve read my weekly column The Weekend Warrior, I have to say that a lot of what I’ve written has been greatly influenced by some of the great box office predictors here at Box Office Prophets - David and Kim and especially Reagen. We haven’t always gotten along over the years, but David and Kim have proven to be hugely supportive during my sickness, proving to me that they are GOOD PEOPLE. I mean, I’m almost tearful when I think of all the stupid arguments we got into over the years on various message boards and the fact that they’d set all that aside to help me and make me feel better.
Anyway, the reason I want to write this and why I’m sharing with Box Office Prophets readers rather than at my normal outlet at ComingSoon.net is that it’s far more personal than I normally get with my writing.
Back in April, I was in Las Vegas - a place I connect with HSX, having gone there a number of times with various members of the forum - and I could barely get anywhere since I was dizzy, out of breath, had blurry vision and absolutely no energy. Anyone who has ever been to Las Vegas knows that wandering around the crowded sidewalk in that state is not good, but I’d actually been having problems for a few days and I figured I could go to a clinic in the morning, get some antibiotics or penicillin and I’d be all fine.
After going to a couple clinics, I ended up at the Sunrise Hospital where they took blood and a doctor who looked eerily like Sam Elliot came up to me and said in a blunt deadpan voice: “Your white blood count is at 350,000. You have acute leukemia. You’re not going anywhere.” That’s how I found out that I had contracted a disease that I knew very little about other than the fact that I remember having a close member of the family die from leukemia decades earlier. I was clearly sick and they had to stabilize me and get that white blood count down (normal is in the 10-20,000 range so essentially the leukemic white blood cells had taken over and made me anemic).
Mind you, I have never stayed in a hospital overnight… barely ever went to one in New York since I had so many bad experiences…. But by 8 p.m. I was in a room and a few hours later, a tiny Indian doctor was jabbing me with a long needle for something called a bone marrow biopsy, basically seeing what’s going on with the bone marrow to get a better idea of the diagnosis of leukemia. A few hours after that, I was having all the blood sucked out of me by a machine that basically filtered out the white blood cells and replaced them with hemoglobin (red blood cells) which is what provides energy and was why I mysteriously didn’t have any.
And then they had to figure out what to do with me. My brother Rob flew in from Maryland to help figure things out and it was decided to send me to Columbus, Ohio, specifically the Arthur James Cancer Hospital, which as it turns out is one of the best hospitals in the country for the treatment of leukemia and lymphoma. They really know their sh*t and they’ve gotten it down to an art and a science. So I clearly was in good hands by coming here. But more important, Columbus is where my mother lives as well as my sister and her family.
I ended up staying at the James for three weeks as they further diagnosed me and started my chemotherapy, which would involve anywhere between four and eight alternating rounds of chemo. Oh, at this point I probably should mention that I didn’t have health insurance. None. Nada. Of course, Obamacare was looming on the horizon with its opportunity for people with pre-existing conditions (like leukemia) to get insurance but that was still months away and I was going into a very expensive regimen of chemotherapy plus an even more expensive process I’ll discuss later.
As luck would have it, once I was out of the hospital I would have to move in with my 80-year-old mother, which was going to be an adventure in itself. I have been living on my own in New York completely independent for 25 years; I’ve been very happy not to live with anyone. My mother, God love her, is old, verging on senility and mostly deaf and anyone who knows me and the fact that I tend to talk fast could understand the frustrations of having a conversation with this woman who is so clingy and smothering. I’m just not a fan of repeating myself or raising my voice but it’s something I’ve had to do a lot while living with her. But despite our problems, I’ve tried to make the most of it and I never take for granted that she’s allowed me into her home and is there to take care of me when I need it.
So let’s get to the next big step in my recovery. The chemo did a good job putting my leukemia in remission but I was told I had to get a bone marrow or stem cell transplant in order to avoid a relapse down the road. The problem is that they couldn’t even start the process of looking for a donor until I had health insurance. My brother and sister put in samples to see if they’d be a match - they weren’t - but what really saved the day (and my life) was the Ohio Medicaid system because three months after I applied, I was accepted and everything just started happening at a much faster pace. Within a couple days, I had not one donor match but two, and anyone who knows anything about this process knows that some people are waiting for years just for ONE match. Again, I got lucky.
But this whole idea of getting someone else’s stem cells placed in me felt like “weird science,” the thought that I could have someone else’s stem cells put into my body and that they would create an entirely new immune system from scratch. But I also knew the risks, the biggest one being something called GVHD or “graft vs. host disease” where the stem cells aren’t able to acclimate to a new body. In order to avoid this from happening, I was given more chemotherapy as well as blasted with “full body irradiation” to get rid of my existing marrow and immune system. Frankly, I was somewhat resentful about the whole process because I was feeling pretty good that my immune system had recovered and kicked the leukemia and I was in remission. This new process would basically have me starting from scratch. And it wasn’t fun.
So on October 2nd, I had my stem cell transplant. It wasn’t that different from chemotherapy really as it basically was a 30-40 minute transfusion of someone else’s stem cells and it was very similar to a blood transfusion, of which I’ve had many. The problem is that I immediately contracted a stomach virus known as C. diff that had a huge effect on my stomach, pretty much had me running to the bathroom every 15 minutes, to be honest and not trying to be gross. But I got over it and after three weeks in the hospital, I was released and the stem cell seemed to be doing a good job creating a brand new immune system. My white blood cells were going up as were my other blood counts, my appetite started to come back and I was starting to feel good.
One of the big milestones for a stem cell transplant patient is Day 100 and I just passed that landmark… unfortunately, things started to get bad again as I contracted Epstein-Barr, which is a sort of mono, the C.Diff came back and I started having full-blown GVHD. It sucked because I felt I was making progress and now I was back at Square One. I’ve been back in the hospital a few times the last couple weeks…. Last week was a nightmare where I really felt they did a number on me but this current readmit I’m feeling optimistic that they’ll figure things out and make me better.
Oh, and I should add that during my nine months of treatment, I’ve remained actively writing. In fact, I have only missed about five or six of my Weekend Warrior columns as I took off much of October and early November. But once my chemo was done I felt like my brain was back to being sharp enough to write again and I’ve felt really good about some of the stuff I’ve written. Also, during the last nine months, I have travelled down to Washington, D.C. and did interviews overlooking the White House, went to New York City for a junket for The Wolverine and I even went to the Toronto Film Festival for a few days and got to see a few movies and do some interviews there. So yeah, I definitely have done my best to follow my personalized motto, “When life throws you leukemia… make leukemi-ade”… I even have a custom T-shirt that would probably get me sued by Kool-Aid if I tried to make more of them.
In conclusion, I just want to say a few things that I hope that people who have been following my story either here or on various social networks will take to heart because they’re important to me:
1. Take your health seriously. Go to see a doctor regularly and when you feel sick don’t assume it’s a cold or fever or something that will go away
2. Get your blood tested – I can’t stress this enough because it’s not something that most normal people would do if they’re feeling the signs of the flu or a fever but blood cancers can hit you from out of the blue, within a matter of days or weeks, and it could be lying dormant within you without you realizing it. But it’s found fairly easily and it should get treated immediately.
3. If for whatever reason someone in your life gets this horrible disease or something similar, make sure you’re there for them but also make sure to remember that everyone handles everything differently and some people like to feel independent and self-sufficient so smothering them with sympathy won’t always help.
4. Don’t take anything for granted. Ever. I can’t tell you how much stupid stuff I’ve dealt with in my life that now seems trivial and pointless. People get outraged over the dumbest things. People are generally selfish and aren’t considerate to others. These are things that should not be and you shouldn’t have to get any sort of debilitating disease to realize that everyone is capable of being nicer to each other.
5. An addendum to the above: You can NEVER have enough friends. Ever. I don’t think I could have even gotten through chemo if I didn’t have so much love and support and prayers from everyone on Facebook, Twitter… my best of friends back in New York City, my internet acquaintances, some who I’ve known for 20 years or more, and just about everyone in my life who always checked in on me to see how I’m doing and was there to cheer me up when I needed someone to talk to. I couldn’t have gotten through this without them. The reason I mention this is that it’s way too easy to judge people or decide that someone isn’t a person that you want to spend time with, but you know what? Everyone has some good in them and you’ll be shocked how that comes out when you need help.
I think that’s enough for now. As the doctor in Vegas told me (not the Sam Elliot guy - the Indian doctor), leukemia is a life-changing experience. It’s something that I’ll always remember going through and getting through and I plan on doing everything I can to share my experiences with others and do whatever outreach I can so that people know what to expect when leukemia or other blood cancers strike because it’s not something that gives you any sort of advance warning.
In general, this whole thing has been a huge learning experience for me from the second I was diagnosed with leukemia throughout my attempts to recover from this stem cell transplant, which has been a massive part of trying to avoid relapsing.
Edward Douglas writes the Weekend Warrior box office analysis feature that can be found over at ComingSoon.net. You can read his discussions of box office, awards and festival coverage on the Weekend Warrior Blog and to keep up with his latest articles and posts, you can follow The Weekend Warrior on Twitter.