Here’s what happens when they tell you that you have cancer. You don’t hear the rest of the sentence. Or the one after that. Or the one after that. Or anything else for the next hour really. The moment the word escapes the doctor’s mouth, everything they say starts sounding like the teacher in Charlie Brown. “You have cancer womp womp waaah waah …”
So before we get too deep into this, I guess I’ll start by telling you: I have cancer.
Womp. Womp. Waaah. Waah.
It’s OK. Take a second if you need it. Trust me, I needed more than one.
Technically, I have Waldenstrom macroglobulinemia, a rare form of non-Hodgkins lymphoma. It’s named after Swedish oncologist Jan G. Waldenström, who “discovered” it in 1944. Lucky guy. His name is forever associated with something that freaks people the (deleted) out. Or so I hear.
You might have lots of questions. Trust me, I have lots of questions. Of course, there’s only one that really matters whenever you get diagnosed with anything associated with the word “cancer” in it.
The good news (depending on what side of the ledger I am with you) is that it’s not going to kill me. To be honest, it’s too damn lazy, but we’ll get to that later.
Now let’s back up. Over the last six months I had noticed a significant decline in my energy level, a decline I basically attributed to an erratic work schedule, a shaky diet and the fact I have two young children who don’t believe in sleeping through the night in their own beds. Oh, and my age. I turn 40 in August, and I remember thinking “no wonder getting old sucks” as I felt my heart rate climb whenever I did anything more taxing than lift my phone to check my twitter feed.
I had tried to donate blood last spring (something I try to do semi-regularly to honor my father, who died of esophageal cancer in 2010) when the nurse told me I couldn’t because my iron level was too low. I was disappointed I couldn’t donate but hardly concerned. My eating habits consist mainly of serving as a garbage disposal for whatever my son Colin and my daughter Catherine don’t eat with the occasional bag of Combos or Twizzlers thrown in. (Sadly, this is not much of an exaggeration). I figured a little more spinach and the occasional steak and I’d be fine.
I was not fine.
The signs that things weren’t right (fatigue, a loss of appetite, shortness of breath) manifested themselves during my 3 1/2 weeks in Russia covering the Winter Olympics. Headaches, pasty skin and pretty rapid weight loss joined the party (though I wasn’t really complaining about the weight loss part). I had an excuse for each symptom, blaming them on 14-16 hour days, the horrific food and an extended case of jet lag.
It really didn’t register until my colleague Eddie Pells and I attempted to climb up to the gondola from the media center at Rosa Khutor Extreme Park on the final day of competition. The climb isn’t for the faint of heart, maybe the equivalent of 60-70 flights of stairs.
I didn’t exactly race up the mountain.
It took forever. I stopped every two flights to catch my breath, as the ego that challenged me to keep up with Eddie ceded that something was going on beyond what I like to call “fat sportswriter syndrome.”
I thought all I really needed to do was get home. That didn’t work either. I visited a primary care physician a week after I returned. He ordered me to have some tests done. Of course, I put it off even as my body kept bludgeoning me with the fact that I was in serious trouble.
I ended up giving a blood test on Monday, March 10. That night I told Ellie “they need to call me tomorrow and tell me what’s going on.”
They did. At 8:30, my doctor’s nurse ordered me to “go directly to the hospital.” Stupidly I drove my kids to daycare. The blood test had revealed my hemoglobin level was 3.5. Typically the range for someone my age is 12-14. The nurses in the ER told me it was a miracle I was even conscious.
The problem? My blood had turned to Jell-O. I was walking around with the blood-oxygen level of someone standing atop Mount Everest. My heart was working so hard because it was trying only somewhat successfully to pump sludge through my body.
Still, I wasn’t exactly prepared when I woke up in the hospital on Wednesday morning and a doctor walked in and handed me a card with UPMC Cancer Centers splashed across the front.
I believe my reaction was something to the effect of “Um, what? Dude, I’m just anemic. Stuff me full of blood and iron pills and I’ll be on my way.”
Not exactly. Three days in the hospital, seven units of EPO-enriched blood (seriously, I think Lance Armstrong can probably smell me from Austin), a bone marrow biopsy and a PET scan followed.
The 10 days between when I fell ill and was diagnosed were maddening. The wormhole of information on the Internets can lead you to some pretty dark places. (Note: the nurses say WebMD should be avoided at all costs).
I thought long and hard about my father and my brother-in-law Bill, a non-smoker who died last summer at 34 after a brief and soul-wrenching bout with lung cancer. They were physically imposing specimens (6-6, 225 for my dad, 6-3, 190 for Bill) chopped down in their prime by the cruel mixture of chemo and disease while their families could do little but watch, a scenario that plays over and over again far too often every day across the globe.
Bill and my dad were strong. I am not. Bill and my dad were stoic. I am not. Bill and my dad were grown-ups. I am not. If cancer took them, what the hell kind of a chance did I stand? I am 5-foot-10, 190 pounds of blah. I get that it sounds like self-pity. Did I mention the part where I spent 10 days not knowing for sure what kind of cancer I had?
Though I made plenty of jokes to deflect the terror that was building within, as Ellie and I drove to my oncologist’s office _ how in the hell did I just type “my oncologist” with a straight face _ it kind of hit me. “Good Lord, I’m going to get diagnosed with cancer. Like in real life.”
On the surface, it looks bad. About 80 percent of my bone marrow is cancerous. A bunch of lymph nodes in my gut and my spleen _ which apparently is the size of a football (note, it should not be the size of a football) too. No wonder my body stopped producing blood, my good marrow is getting strangled.
And while all that sounds horrific, the truth is I am going to be fine, or as close as somebody with cancer can get. It says so right here.
Here’s what I can tell you: it’s not a tumor.
Waldenstrom’s is considered an “indolent” form of cancer. That’s a fancy word for lazy. The doctor estimates it was growing anywhere from 2-5 years before showing itself.
Of course I got the laziest form of cancer. Because well, have you met me?
The long-term survival rate is off the charts for patients my age, basically because there are so few of us (the average Waldenstrom patient is 61). The treatment, amazingly, is not chemo but targeted immunotherapy, which I will receive once every three weeks. I’ll get a shot in my stomach (fun!) every 3-4 days and pop some steroids in between.
Basically, I’ll be on enough drugs (along with the EPO) that I should be penciled in at third base for the Yankees.
The doctor says the cocktail I’ll be on is 97 percent effective. Because there is no cure (at least not yet), we can’t kill the cancer, just make it go to sleep for awhile. I’ll be tested regularly for the rest of my life to see if it’s waking up, which it will at some point.
This sounds bizarre, but I’m lucky. Very lucky. At the moment, I plan on working during treatment. I have no restrictions on my diet or what I can do. (That’s what the doc says, but I’ll point out I still can’t dunk a basketball). And hey, I get to pull the “I have cancer!” card out in mid-conversation if I get into an argument I think I’m losing.
I’m writing this because I watched my father hide his battle with cancer until it was almost too late. I’m writing this because I’m a blabber-mouth. I’m writing this because it’s going to get out anyway and I don’t want folks (particularly colleagues) to hear “Will has cancer” and have them think they can start polishing their resumes.
I’m not going anywhere. Sorry copy editors of the world.
The folks I have told in person have offered up their prayers and support. I imagine more is on the way as this gets out. And while I am thankful and grateful for them, there’s something that will be just as important to me: your blood.
Because I’m not a vampire (and more accurately, because I don’t look like Alexander Skarsgard) I can’t take it directly from your neck. That would be rude. And gross. And probably illegal.
Hopefully I won’t actually need any more transfusions, though the doc tells me I likely won’t see any real progress in my marrow until months after my initial treatment. Seriously, though, there is a blood shortage throughout the country and people in worse shape than I am are in desperate need. It really is the best drug out there.
And if they tell you your iron level is low or there is some other issue: GO GET IT CHECKED OUT FOR GOD’S SAKE.
I’m not sure what I’m going to do with this space. Like myself I consider it a work in progress. I won’t write about cancer necessarily (though I will provide the occasional update). Maybe I’ll write about my kids. Maybe I’ll write about something I couldn’t find a place for in a story I’m working on. Maybe I’ll write about my stunningly supportive wife, who has already endured more in our 9 years of marriage than some spouses have in a lifetime. Or maybe I’ll just crack lame jokes (oh wait, that’s my twitter feed).
The gist of all this, though, that I’m going to be fine. My sister told me this whole thing is just a ploy for attention.
Think maybe next time I’ll just post a naked selfie instead. Tastefully done, of course. Then again, maybe not.
I’ve got cancer. So what? Cancer will not have me.
Take it from here Uncle L.
— 30 — (that’s fancy journalist talk for I’m done)
Be careful too much personal info with your number on there, dates of birth, remove the photo….please. It has identity fraud all over it!!!! Good luck with everything too!!! Praying for you!
Bill; Thanks for great article. You are now in a very special club. You have become a “Wallie”. Hope you
and your wife will join us at the next International Waldenstroms Foundation (IWMF) conference in
May, 2015 in Dallas. It’s very enlightening to stand
in a room with 300 “Wallies” from all over the world
with some of the top physicians and researchers
in Waldenstrom’s. If you happen to be in London
this fall there is another IWMF meeting that will
have 240 researchers in attendance. All the
best to you and your family. ROONIE
Good luck with everything too!!! Praying for you!
God bless you, and be strong. YOU GOT THIS!!!!! Wishing you the best
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