Patient No. 840379159

Sadly, this wristband did not get me into the club

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)

Advertisements

110 thoughts on “Patient No. 840379159

    • Hardout, good luck to you all the best, probably the things you don’t want to hear but its been written for you to see. I haven’t got da BIG C however my 7 yr old grandson was recently diagnosed with brain cancer, the months have been hard on the whole family. Everyone has different ways of expressing pain when it comes to loved ones. We are a very lucky family all very close, having a sickness like this pop up in our lives has given us all a lot to think about. I cant imagine the pain you have been through but seeing the pain my grandson goes through is devastating. He 2 has had cemo , then radiotherapy and just finished another cycle of cemo. Had his MRI Scan we now await the results on Wednesday. Much luv to my beautiful daughter inlaw and Son for being the most awesome parents.
      Have you heard of Relay For Life,, my grandson wanted us to do it, so 60 of us through the family registered and walked for 18 hours it was awesome. First timers we were stuffed at the end of it though but hey it put a smile on his face..
      So big UPS and good luck to everyone who has been diagnosed with the BIG C..

      • Thank you for your reply. I wish your grandson all the best and good luck. I would recieve my verdict next Tuesday and until then you live with hope and suddenly the despair takes over. My son & beloved daughter in law surprised us with the news that in some months from now we would become grandparents which made us happier than we could Imagine possible.
        I have not heard about Relay for Life. We don’t arrange it in Sweden but we have something else which also takes place in USA and most of the Europe. It is to offer children their wishes and most of the celebrities and big companies help out to make the day possible.
        Good luck.

  1. hi I just wanted to suggest a treatment I have heard about… its called gerson treatment ..its a true cure you can find other patients talk about on youtube and there is an official website.. the clinic is in Mexico because the us has made it illegal for doctors to practice other forms of treatment that actually work…. I have told a few people but no one really believes it work. I have heard these theories about healthy eating curing cancer but never saw any patients say that were cured. There is a movie called the beautiful truth.. its pretty slow film it talks about a lot..but towards the end it goes into detail about Gerson the treatment and they have interviews with actual patients… showing them before and after the treatment… please take the time to look into it…. I can tell you are a strong individual…no matter how you choose to go about your journey never give up…. You will be in my prayers.. 

  2. You’re a brave man. From what I’ve heard brave people don’t really feel brave most of the time, they just carry on in faith and do what brave people are supposed to do. So whatever you may be feeling, you’re a brave man. Keep up the good work. By the way, you have my prayers.

  3. Wow! Know that there is an extreme amount of love and support flowing toward you right now. It’s beautiful to see that and see how you’ve chosen to address this challenge in your life. I’ve heard it said, ‘laughter is the best medicine’. It is present in your words, but so is power and light and clarity and strength and beauty. I know I have just read something extraordinary from an extraordinary soul… my thoughts and prayers are with you!

  4. As a new patient scheduler at a major cancer center I talk to people that are like deer in the headlights of a Mac truck named cancer. I schedule people from every walk of life with every diagnosis: Pancreatic, Leukemia, Brain, Lung and spouses and children that are just as traumatized and in shock as the patient. My advise for you is to get treatment or second opinion from a Nationally Designated Cancer Center where the latest treatments can make a difference in outcome. Secondly believe in your battle and know there is a finish line. Lastly, find comfort that you are in a big boat with others just like you. You are not a number and someday you will say, “I am a survivor.”

  5. I like your attitude, stay that way. Some of us has written expiration date and honestly I love having an expiration date. It makes me live life to the fullest everyday knowing that I may not be back tomorrow to say goodbye or write something. I am cardiac patient and I’m trying to raise my GAF, Global Assessment Function. Somehow, I was able to.

    I hope that you will think that “this event” is a gift and not a curse.

  6. Prayers for you and your family. I must say I had to stop and take a minute more than once, I can’t imagine being in your shoes. But if it’s my destiny I pray for your strength.

  7. It’s great that you realise that you are still lucky. They never teach you in school that 80 percent of us will never get old and way less of us will do so In perfect condition. Illness is a lot like pollution. It sucks, but all we can do is our best and thank or lucky stars that the average life expectancy is 65 instead of 30 like it used to be.

  8. I really enjoyed your story and I hope it made you feel better (of course, emotionally…) to get it out there. I hope to read more about your kids, the cancer, etc. I have a question though…. at the end of the blog… you said “My sister told me this whole thing is just a ploy for attention”, was she joking or being serious? I have health issues myself, is why I am asking. I live in a different state than my family and if I talk about my health problems, they change the subject and/or say they need to get off the phone. There is much more too it but I just wonder if the doctor’s visit.. have you had the same reaction? *~Keep writing, don’t hide it! ~*

  9. As a thyroid cancer survivor, I was diagnosed at 29. I completely understand your Charlie Brown statement. Once the doctor said “cancer” I completely tuned everything out. Fast forward to 8 years later, I’m cancer free and no longer scared of the word. Much love and luck to you, and your family.

  10. Pingback: The Best Medicine | A Blog Called Quest

  11. Wow! So, you hadn’t had a check up in the 2-5 years the cancer was growing? I’m just curious, because I’m having some of the same symptoms, especially fatigue, but I have been to the doctor tons

  12. The last line is so powerful, I wish I could have told that to my stepfather before he passed away from melanoma. Maybe it would have given him the drive he needed to fight that ugly monster.

  13. I just stumbled upon your post – sending lots of positivity your way! (seems like you have a ton of that already, but a little more couldn’t hurt, right? 🙂 )

  14. Can’t do prayers as I don’t believe. Can’t send you blood as it might be a bit stale by the time it gets there from the UK and I only have lined envelopes. Can do wtf is that type of name for a cancer! Is it not bad enough finding you have something that people have not long stopped referring to as the C word?
    Can follow your instructions to get myself checked out (ignored symptoms for far too long ) and will. Fight warrior you are stronger than you know.
    blessings x

  15. Great post, you really made me smile. I don’t have cancer, but I might, and when I was first told it was very scary. I have a “freckle” in my iris that wasn’t there five years ago, so it may be it is cancer. Fortunatly, if it is, it will grow slowly, and untill it effects my eyesight they just watch it. So I can really relate to your lazy cancer, and love your attitude. Its a strange thing to live with, but strange is doable.

  16. Good luck with your fight. Prayers for you and your family. Lean on your faith and your wife is an Angel sent by the Lord for you, lean on her strength and Love.

  17. I really do believe “cancer” is up there at the top of things people fear the most. My husband died from it, and I, too, have had it and live in fear of getting it again! Keep that positive attitude.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s