Sadly, this wristband did not get me into the club
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)
A Blog Called Quest 
Holy shit man. Holy shit. If I believed in luck I’d wish it. Go get it.
Prayers and I look forward to continuing this journey of reading what you have to offer. Your writing style attracted me to your blog. Content is interesting because I learned things.
Forward March and don’t take life for granted!
All the best. So looking forward to many more years of corny jokes on Twitter.
So well written, Will. As usual. All the best.
Fight hard. Be around for those beautiful kids (and grandkids). Sending you lots of positive energy and stubbornness. I would send you brownies but the Internet gets upset when I squish all that chocolate over its bytes.
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So sorry you and your family are going through this. And seriously, WebMD is the WORST! You have my support, and if I was closer I’d share my universal donor O negative blood. Wishing you well on your treatment.
Will, thank you for sharing!! All I can say is WOW!! We’ve known each other since grade school (and it was really hard to not type “Willie”)…I find it always puts life in perspective when you find out about the various things people struggle through in life, big and small, especially as we grow older. Sending positive thoughts, prayers and wishes for you and your family. 🙂 ~Christy Bryant
Can’t agree more about the WebMd dangers…as you need support during your fight (and you encounter other fighters and survivors), visit livestrong.org for free Cancer Navigation Services with professional staffers. EPO bad…Livestrong good.
Also check out CampKesem.org as a resource for your kids in the coming years.
Good luck, and LiveSTRONG,
Beat it, Will! DO IT! Thoughts and prayers!
Best wishes in putting this on the back burner and moving on. From another lazy sportswriter/copy editor back in Louisville….
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Reblogged this on L. L. Davis and commented:
Important
You will definitely beat this cancer! I know you will! Looking forward to reading more from you!
Beat it’s *ss and give your kids a great story to tell! Prayers
http://www.spiritscienceandmetaphysics.com/molecular-biologist-explains-how-thc-completely-kills-cancer/
http://www.bibliotecapleyades.net/salud/salud_defeatcancer30.htm
http://www.curenaturalicancro.com
Youre going to be okay 🙂
Just stumbled upon your feed and read feverishly through this post. It’s so beautifully written yet piercingly real. Would you mind if I stole it to teach my 16 year olds how to write non fiction? I doubt there’d be any behavioural issues if this was their lesson content for an hour. Wishing you the best 🙂
Wow. Yeah, sure feel free. And thanks for the kind words. My wife and I are hoping the worst part (not knowing) is behind us.
I’m doing the same for my Sophomore English class.
You’ve got this. You’ll be okay. And to help this, I’ll be praying (if you don’t mind).
Also, I know this isn’t supposed to make me laugh (not at all), but this line did: “Basically, I’ll be on enough drugs (along with the EPO) that I should be penciled in at third base for the Yankees.” You’ll be okay. Just make sure you don’t lose that sarcastic sense of humor. 🙂
Welcome to the blood cancer club. I have a different variety, multiple myeloma, and was diagnosed similarly back in 07. I even cracked an Alex Rodriquez joke during treatment. 🙂 So, we have got that going for us. My cancer is not as routinely indolent, yet it has thus far played out much like you are led to believe yours will. I enjoyed reading your post and hope you will continue to share the journey.
OK, you have just nudged me to go give blood for the second time ever. And to register for the bone marrow donor programme. Thanks for that.
I couldn’t read the last half of this touching perfectly written blog. But I am going to be a student studying oncology to cure the sick soft if like you. You have a positive attitude and that is amazing. Most people with any type of cance have a positive attitude but some get depressed and can’t handle it but there loved ones keep pushing them to keep fighting. I loved the part where (I quote) you said “I have a type of cancer that is lazy, have you met me?” I had a smile on my face because my grandma had passed away from having breast cancer then getting rid of it then it came back and went to her precious brain. She fought and fought and fought till her very last breath. So my point is just keep fighting and never give up<3
I clicked not not as in I like this post but hoping that little gesture send nothing but positive, healing energy your way.
you have cancer im sorry and what kind i have cancer to its in my leg
you have cancer but you’re going to be ok 🙂 Please keep us all updated on your progress 🙂
I will delete my subscription to WebMD. If I could I’d donate some blood but it seems I don’t meet the weight requirements. Seriously, I don’t. You seem like the kind of guy who will leave this cancer thing choking in the dust. All the best to you and your family.
Dude. I have to say that I admire your strength and ability to find humor in such a serious life situation. Finding the funny in cancer is tough. “I have a type of cancer that is lazy, have you met me? … and “fat sportswriter syndrome…” I give you props on keeping whatever you can positive and staying strong during your journey. I hope to hear more of your story. Makes me feel good that I donate blood and that I’m a registered bone marrow donor … maybe I’ll be able to save someone like you one day. Take care.
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Where is that?
“Well, if you’re going to have cancer, this is the best kind of cancer to have” is what I was told when I was diagnosed with thyroid cancer at the age of 36. I think you’d agree that the best kind of cancer to have is “no cancer”. UPMC has a well-known cancer center, you’ll get good care there. Best of luck to you and yours.
I love your grit! All I can offer is –stay strong and informed! Thanks for sharing your pain
Good writing,you are the person who is going to nail cancer something you should not bother about at all
Thank you so much for sharing. Isn’t it weird how many shades of gray exist in the cancer world? I lived my whole life terrified of the “C” word, but when I got diagnosed (thyroid cancer, age 25) I realized how lucky I was to get such an “easy” form. It’s never easy, really- I was just told today that my cancer is back not even 6 months after I was declared cancer-free. So, more needles and surgeries and treatments. But a year ago I would never have guessed that I would eventually be grateful for not getting a horribly aggressive form of cancer, and instead see the silver lining of my situation. I wish the best for you. Fight the good fight!
What a story and so well written!! With this state of mind Will, this lazy “thing” will not only go to “sleep”, it will vanish. All the best to you and your family.
This is so well written, I feel guilty saying that you made it entertaining. Good luck and I wish you all the best.
Lovely blog! Stay strong always my prayers are always with you. You can fight it out!!! WILLPOWER AND STRENGTH!!! 🙂
Sorry to hear the news. Great article, though.
So brave. Keep on keeping on, man.
Take care and never stop looking forward!
Reminds me of a book I read many years ago of a guy who had cancer…titled…Come get me if you can…or something like that. The truth is were all going sometime..I have been going for years so many things have tried to get me. If I began the tale you would think me a walking freak show. So live, write and love. All we have is time. We don’t know how long so use each second well. I live in Kenya, Africa. But I will donate every drop of the red I can. Just breathe!
It takes a strong person to address this situation in such an informative yet joking manner. I hope they soon find a cure for this type of cancer for your sake and everyone else that battles it. My father has cancer as well and he too has survived.
just found you tonight. i’m so sorry to hear of your diagnosis. thanks for being so very vulnerable. best wishes to you.
I’ve just posted about a new book by a Cancer patient “Hope Beyond Cure” , Check it out.
I’ve just gone through 10 months of an esophageal cancer scare, so can both relate and empathize with you.
Its hard to read some blogs but i find your strength amazing, and humorous. Stay strong, and good luck with your treatment.
You can do this. You are stoic enough. I suffer from a debilitating illness and I cope. I have surprised myself by this. It is amazing what the body can cope with. I’ve just had to learn to listen to my body and accept when it says no.
Reblogged this on deborahprosper.
very nice post… thanks
Thanks for sharing your story! I was diagnosed with acute lymphoblastic leukemia on Feb. 20th and felt the same way you describes… Womp, Womp, Womp. I too am so lucky that mine is a disease that with two years of treatment they can almost get rid of. I look forward to continuing to follow your story and will keep you and your family in my thoughts and prayers!
I pray for you and I do enjoy your stay of humor while you travel this journey down cancer lane. Just remember to stay in the fast lane of living through this moment.