Editor’s Note: The following is a detailed account of a week that my family and I experienced one month ago. Every detail is true. And, if you do set aside the time to read what for certain has to be the longest column I’ve ever written, you’ll see that every detail is personal. However, by deciding to make it public, it’s my hope that this story can help many of those who read it, in one way or another. Because of the personal nature of the story, I’m requesting that any negativity not be left in the comments section or on the insideSTL message board. I debated whether or not to make this public, but after talking it over with my family, I thought the good would hopefully outweigh the bad. So, I decided to put this out there. If you want to make a negative comment about the story or anything else, you’re welcome to do so by emailing me at email@example.com.
The Price of Hope
Tim, I wanted to be the one to call you, since I’ve known you the longest, and I didn’t want you to hear this from someone you don’t know very well. But, taking a look at your CT scans, I’m afraid it looks like you have lymphoma.
I received that phone call from my doctor at 3:42 on Wednesday November 14th.
I was sitting in my office, and with that one phone call, my world changed.
At age 36.
I didn’t know much about lymphoma—Hodgkin’s or Non-Hodgkin’s—but I just had been told by my doctor that I had it.
I sat there and just stared. He was talking. And, technically, I was listening. But, I wasn’t hearing him.
I suppose I remember him telling me about the 85 to 90% survivor rates. He told me about chemotherapy. And, he told me that I could beat it.
But, I just sat there in shock.
Everything had started back in late July. I don’t know if it was a coincidence or not, but right after I had a root canal, I woke up with a dry mouth, and I’ve woken up with a dry mouth everyday since. I walk into the studio every morning with a couple of bottles of water.
I also was waking up with pain in my right ankle one day, then my right wrist the next day, then back to my right ankle the following day, then back to my wrist. Just depended on the day. But, either way, I would wake up with pain in a joint somewhere on the right side of my body. This had been going on for a few weeks.
So, I went and saw a doctor.
He had me tested for rheumatoid arthritis.
It came back negative.
The symptoms persisted.
A couple of weeks later, he had me tested for diabetes.
It came back negative.
The symptoms persisted.
Fortunately, I began seeing a massage therapist whose work put the joint pain to an end, and I hadn’t experienced it since. But, the dry mouth continued.
And, so I saw an Ear, Nose, and Throat doctor, and he had me tested for Sjogren’s Disease, but it also came back negative.
The doctors’ visits started in early August, and I was now on to another doctor to see if I had Celiac Disease. This was on Halloween.
The tests came back negative, again.
But, this time this doctor discovered I had a really weak immune system. My immunoglobulin a and g were quite low, and so the next step would be to go from collecting that quantitative data to collecting qualitative data, and see how my immune system reacted to a vaccine. On November 8th, I was injected with the vaccine, and I was to go back to that doctor a month later to see how my immune system reacted.
In the meantime, I had developed a cough, and it was an odd cough. Most of the time, you get a cough, and it goes away after a couple of days. Well, with this cough, it was sticking around. And, unlike most coughs, nothing was coming up. It was just a dry, persistent cough. I was coughing so badly over the weekend that I got a headache.
Considering the information I had received on my immune system, I thought it’d be wise to get to the doctor and have it checked out.
This was on Monday, November 12th.
I went in, thinking the appointment was no big deal. Hopefully they’d be able to give me some medicine, and that would be it. But, at the end of discussing it with my doctor, she said I should get a chest X-ray just to double check. So, I went down to the outpatient services area, where I was becoming a regular with all of the blood tests I’d been getting over the last few months, and got a chest X-ray.
During the show Tuesday, November 13th, I got a phone call. It was from the doctor I had seen the day before. Following the show, I gave her a call back, and she informed me that my lymph nodes in my chest were really swollen, and while it was nothing to lose sleep over, she wanted me to get a CT scan just to be safe. When lymph nodes are that large, it can be a variety of things, most of which are harmless. But, it can be lymphoma.
So, because we were scheduled to go to Sanibel, Florida—the spot where we were married—Friday the 16th for our first wedding anniversary, I wanted to get this taken care of as quickly as possible. I went out to get the CT scan that afternoon, and that was, I hoped, that.
But, as you can imagine, anytime you hear the word lymphoma—which is cancer of the blood—it gets you nervous. I had only told my wife and parents about it, and I was hoping that’s as many people as would ever have to worry about it.
And then, at 3:42 p.m. Wednesday, November 14th, the phone rang.
It was my doctor.
It’s never good when it’s the head guy calling you.
And, unfortunately via poker tells over the years, based on the tone of his voice, within five words of the start of the conversation, I knew I was fucked.
That’s when I heard those words:
Tim, I wanted to be the one to call you, since I’ve known you the longest, and I didn’t want you to hear this from someone you don’t know very well. But, taking a look at your CT scans, I’m afraid it looks like you have lymphoma.
While he was talking, I remember just staring. My mind was racing, but I was numb. During the occasional moments when I would somehow be able to pay attention, I heard him talk about the survivor rate and chemotherapy. He talked about people who have gotten it and beaten it. And, even though I’m sure he’s had to make worse phone calls than that, he apologized for having to be the one to give me the news. Kind of in the same way you say, Thank you, officer,after being handed a speeding ticket, I thanked him for the phone call and hung up.
No matter what, life would never be the same.
I sat there, dumbfounded.
Now, I thought, comes the tough part, or the first of many tough parts. Now I have to tell my family.
I walked out of my office and down the hall to my Dad’s office. I asked him to come back to talk.
He closed the door behind him.
He sat down, thinking this was about the business.
Of course, at that moment, the business was the furthest thing from my mind. Rather directly, I told him I had just received a call from our doctor, and that he told me the CT scans indicate lymphoma.
It’s always awful when your Dad cries, isn’t it?
We talked for a few minutes, and as you might imagine, it was pretty rough.
But, I still had two brothers, a sister, a mother-in-law, a father-in-law, my Mother, and my wife to tell.
I said to my Dad, Well, I guess I have to call Mom and Anna-Marie.
Timmy, I think you can call your Mother, but I think you should tell Anna-Marie face-to-face.
In my shock, in my haste, I wasn’t thinking clearly.
No matter what though, these conversations were going to be brutal.
My Dad made a great prediction. Knowing my Mom is forever positive, he said she’ll focus on the 85% to 90% survivor rate, and not the fact that her son has cancer.
Sure enough, that’s exactly what she did. Of all the phone calls I made that night—to my brothers, to my sister, to my mother and father-in-law—that call to my Mom was probably the easiest.
That’s what hope will do for you.
The phone call that was the toughest was my little sister. One of her closest friends was Megan Boken, the Saint Louis University graduate and volleyball player who was shot and killed in August. She had already dealt with more than most 22 year-olds had been forced to handle this year, and I had to call her and tell her that her oldest brother had cancer.
Well,she said, I’ll be there for you whenever you need me just like you’ve always been there for me whenever I’ve needed you.
Typing those words now still crushes me.
The most difficult moment of all, and the moment I’ll never forget, was telling Anna-Marie.
That drive from Downtown westbound on Highway 40 at rush hour is always unpleasant. Knowing you’re about to tell your wife that your doctor just told you that you have lymphoma makes it unbearable.
Now, Anna-Marie was under the impression—like I had been before getting the phone call—that we were going to find out the results on Thursday at a scheduled appointment.
So, she had no idea—nor was she thinking about the possibility—that I had been told anything while Downtown at work.
I arrived home and went upstairs. She was on the phone with her mom. It was the first time she was telling her mom anything about the possibility of me having lymphoma. She got off the phone.
She could see in my eyes that I had something important to tell her, so there was a bit of a pause.
And, then I told her.
The next 10 minutes were some of the most painful and unfortunately memorable minutes of my life.
She cried so hard that she couldn’t stand up.
I just held her.
We just stood and held each other.
There was nothing else to do.
She was sobbing, and apologizing for sobbing, because she figured that wasn’t helping my state of mind.
However, oddly enough, while it was devastating to be the person who caused one of the most important people in my life so much pain, her actions and words in those 10 minutes let me know that there was no way I was going to be alone in this fight.
Telling my wife and making those phone calls that night made the evening of November 14th one of the worst nights of my life. Knowing that just by speaking words to the people closest to me, I was going to cause them pain, it was heartbreaking.
Don’t get me wrong.
I was shocked. I was scared. But, I was fine with me having to deal with it. But, the fact that my situation was going to hurt some people who were just wonderful human beings, who happened to be related to me, made me feel terrible.
And that feeling didn’t just go away after making those calls and telling everyone the news.
It got to be time to go to bed, and it hit me: there was no way in hell I was going to be able to have a good night’s sleep. My mind wouldn’t allow it. Even for the brief moments when I was able to focus on something else other than the phone call from my doctor, within seconds, it’d hit me: I have cancer.
I was lying in bed watching television. I remember flipping around and coming upon David Letterman’s monologue. One of the jokes made me laugh.
But, like gravity, it’d pull me back, Oh yeah, I have cancer.
Maybe I’d be able to fall asleep, but at some point in the middle of the night, I knew I would wake up, and it’d hit me again.
Oh, yeah. I have cancer.
Sure enough, that moment in the middle of the night came at 4:20. Do with that what you want. But, for the record, it only was 4:20 on my clock. I am one of those people who has their alarm clock set 25 minutes fast, even though I know it’s set 25 minutes fast, so I have no idea what the point of it is.
So, doing the math, that moment really came at 3:55.
I woke up, and I figured that was it. I was up for the night.
After going for a mid-morning piss, I returned to bed, figuring I was about to toss and turn for a half-hour before conceding, and then somehow going in and doing the show.
Surprisingly, I fell back asleep.
And, what happened while I fell asleep is something I can’t forget, but I hesitate to share. I’m sure many people will say it didn’t happen, but all I know is that it did. Interpret it however you want. But, it happened.
Disclaimer: for the record, I’m not a religious person. Contrary to what some may say, I’m not anti-religion. Not at all. I want people of all faiths to be able to practice the religion of their choice. I just don’t want that religion to have any role in governmental policy.
Just like you—no matter what your beliefs are—I don’t know what happens after we die. I’m open to all theories. I was raised Catholic. I went to Catholic grade school and high school. And, ironically, it was my theology class at St. Louis U. High that taught me critical thinking, and what brought me closer to being agnostic than Catholic.
However, I don’t loathe religion or think those who practice it are fools. Many of the finest people I have met are quite religious. I’ve just noticed a trend over the last eight years or so to implement a specific religion in some political campaigns, and that has turned me off quite a bit.
But, whatever the hell took place when I went back to sleep—whether it be a hallucination caused by the emotion and stress of the situation or something otherworldly— it happened.
Do with it what you want:
As I was sleeping, I guess I began to dream. But, unlike normal dreams, this dream was just a sun-like object pulsing with light behind it. It was an orangish-yellowish circle with a bright, white light behind it. And the orangish-yellowish circle just kept pulsing.
I recall the light being so bright that I initially wondered if I had overslept, and that the light that was causing me to cringe was coming in through the windows from the outside. But, then I had some form of awareness that I was dreaming, and the presence of the light was calming.
When my alarm went off, it was still pitch black outside.
Part of me is hesitant or embarrassed to even write about this, as I know it comes off as batshit.
And, I’ll be the first one to say that it could’ve been some kind of mindfuck that came as the result of the hell of the previous 13 hours. But, it happened. And, it was calming in a time of fear and sadness.
As I wrote, do with it what you want.
But, for the purpose of telling the story, I want to include everything.
Somehow, I was able to go in and do the show that morning. Usually, hosting the show is something I look forward to and could do if I woke up at 6:50. On this particular morning, I was dreading it. Damn near everything that goes on in my life I share with the audience. And here I was with the biggest and worst news of my life, and I couldn’t talk about it.
Out of pure coincidence, Producer Joe had lined up a bunch of interviews for the day. We had representatives from every team in the area on that same day back in 2011. Cardinals, Rams, Blues, Missouri, Illinois, and Saint Louis U. He called it a traditionsince he did it last year on my final show before leaving for my wedding. In this case in 2012, it was about the best thing I could ask for on the show, because I don’t know how I could’ve gone about doing the show like we normally do, and act like everything is cool.
Fortunately, since we were supposed to go to Sanibel, that show on Thursday, November 15th was already scheduled to be my last until after Thanksgiving, meaning I wasn’t supposed to be back on the air until November 26th.
That allowed me to handle whatever was going to need to be handled without having to explain why I was missing shows.
But, the news that came with the phone call on Wednesday also likely meant that we weren’t going to be going to Florida.
I mean, I couldn’t even look at our wedding pictures around the house without feeling pain. I’d look at my face in those pictures—which is already hideous and ruins the images—and I’d think, Look at that fucking guy. He’s smiling on one of the best days of his life, and he has no idea what’s coming in less than a year.
So, I couldn’t imagine returning to the location of our wedding—which really did wind up being one of the best days of my life—and sit there in the same spot one year later, with cancer.
That was going to be a tough decision.
I called my Mom after the show to discuss that decision and see how she was doing. True to form, she was still being absurdly positive. I told her I could call her from a burning building, and she’d still remain calm and tell me that I’ll be fine.
Considering my pragmatism (often mistaken for pessimism), her perpetual optimism was rather annoying, and it sure as hell seemed illogical based on what we knew. But, that didn’t stop her. She was going on and on about how everything was going to be fine, and then she worked in a City Slickers reference to provide some context for the situation.
Yes, City Slickers.
Now, it’s one thing to quote The Godfather, or The Graduate, or even Caddyshack.
But, less than 24 hours ago, I was told I had cancer.
I don’t need FDR’s Inaugural Address, but I would appreciate more than a line from City Slickers.
I couldn’t let it go by without asking what the hell she was talking about.
She said, You know when they’re riding along and they’re asking each other about the best days of their lives and the worst days of their lives.
This still wasn’t working for me.
Well, Billy Crystal’s character says the worst day of his life was when they found out his wife had a lump in her breast, and they thought it was cancer. But, he goes on to say later that day they found out it wasn’t cancer,she said, recapping the magic of the City Slickers’ screenplay. And Bruno Kirby’s character says to Billy Crystal that because it turned out his wife didn’t have cancer that his worst day actually became his best day.
So, what does that have to do with my situation?
Well, you never know. Maybe they’ll find out you don’t have cancer, and it’ll be the best day.
I appreciated the optimism, but I worried that when the news became official after my biopsy, and when that first chemotherapy session arrived, it was going to hit her harder than anybody, because then there could be no more denying that this was real.
Later that afternoon, Anna-Marie and I headed to the hospital to meet with the doctor for the appointment that was supposed to be the moment we found out the results of my CT scan. That drama was eliminated 24 hours earlier with the phone call from my other doctor.
Now, we were going to just ask questions and find out the next step.
I sat there with my wife and had a bunch of questions typed out on my phone.
But, there wouldn’t be much time for questions.
After pressing all over me on the examining table, the doctor told me to hop off and sit down in the chair next to Anna-Marie.
If there’s one thing I want you to take away from today, it’s this: whatever you have, it’s curable, and it’s not life-threatening.
His tone was a little different than the tone I heard on the phone call on Wednesday. I asked him why that was.
Because I’ve had a chance to examine you.
The doctor who called me had not. He was just making the phone call with the bad news, because he has been my family doctor for years, and he felt an obligation to handle it. But, the CT scan was that bad that he felt confident enough to tell me the overwhelming probability was lymphoma. This doctor also considered lymphoma to be likely, but he included another possibility.
You likely either have Hodgkin’s lymphoma or sarcoidosis,he said.
Well, now I’ve gone from as close to a diagnosis without getting a diagnosis of cancer to at least having some hope that it’s this sarcoidosis thing.
Sarcoidosis, unlike lymphoma, is not malignant. It’s also rather uncommon in white males. Bernie Mac had sarcoidosis. So did Reggie White. Actress Tisha Campbell has sarcoidosis. It can be a problem, but it also can be so trivial that people may have it and not even know they have it. I didn’t know much more about it, but all I knew is that at that moment, given the alternative, I wanted to have sarcoidosis.
The next step was to get a biopsy. The doctor said I had a raised lymph nodenear my right collarbone, and that was a good thing, because a surgeon would be able to take that raised lymph node off and use it for my biopsy.
But, because he wanted to get the biopsy as soon as possible, he told us that we could not go to Sanibel. We were scheduled to leave Friday, and the doctor told us that his plan was to have me see a surgeon Friday and get that raised lymph node excised.
If that didn’t work—and by that he meant if there wasn’t enough tissue to determine what was wrong—they’d have to go into my chest in a more complex procedure that would require anesthesia.
But, we weren’t focused on that. While we were sad that our first anniversary trip was officially no longer a possibility, we were happy to walk out of the hospital that night with some form of hope that it wasn’t cancer.
Hell, we were so happy we went out to celebrate.
Man, in hindsight, the idea of going out to celebrate something so trivial seems so batshit, but that’s how tense the situation was. That’s how emotional it was. The slightest bit of good news—or what we interpreted as good news—was enough for a celebration.
And so we went to Citizen Kane’s at 8:30 on a Thursday night.
Looking back on that night, it was strange how happy we are.
But, after the news of Wednesday, the glimmer of hope from Thursday was enough to want to go out and celebrate.
And, even if we were tricking ourselves into believing there was a chance for something that really didn’t exist, the rush of the hope was enough to bring us—relative—happiness, and a good night’s sleep.
But, the next morning, we were back at it.
This time I had to meet with the surgeon who was going to perform my biopsy.
But, there was just one problem when we went in to see him: he didn’t see a raised lymph node, and so there was no biopsy to perform.
I noticed he began asking questions such as, Has anyone in your family had lymphoma?
Are you experiencing night sweats?
Have you lost a lot of weight recently?
Since I had been doing exactly what doctors can’t stand patients doing—looking up their disease on the Internet—I knew exactly why he was asking.
He was going through the specific symptoms of lymphoma, and when he couldn’t find the raised lymph node, and I told him the only things that I had were a dry mouth and a persistent cough, I could tell he was wondering if this really was lymphoma.
Our hopes were raised again.
It’s funny—except by funny I mean miserable—how going through this process, you just try and interpret any little thing—any little phrase—and try and see if you can piece together the doctor word-puzzle.
But, in reality, no one would really know for certain what was going on with me until I had a biopsy.
And, now that there was no raised lymph node in my right shoulder, a cardiothoracic surgeon was going to have to perform a mediastinoscopy.
What’s a mediastinoscopy?
Since it was my body, I wanted to know that as well.
From the good people at Wikipedia:
Mediastinoscopy is a procedure that enables visualization of the contents of the mediastinum, usually for the purpose of obtaining a biopsy.Mediastinoscopy is often used for staging of lymph nodes of lung cancer or for diagnosing other conditions affecting structures in the mediastinum such as sarcoidosis or
Mediastinoscopy involves making an incision approximately 1 cm above the
suprasternal notch of the sternum, or breast bone. Dissection is carried out down to the pretracheal space and down to the carina. A scope (mediastinoscope) is then advanced into the created tunnel which provides a view of the mediastinum. The scope may provide direct visualization or may be attached to a video monitor.
Mediastinoscopy provides access to mediastinal lymph node levels 2, 4, and 7.
Since that makes no sense to me, here’s my definition for my brethren and the good people of South City:
Basically, an anesthesiologist puts me to sleep. The surgeon cuts me up real nicelike above the sternum, and then slides a scope down there to get tissue to see if I have cancer, and if so, what kind of lymphoma it is.
A family member is a surgeon, and so I contacted him about the situation. He was the first person outside of my immediate family to find out about my now 48-hour-old phone call telling me I had lymphoma.
But, he wasn’t so sure. It’s not that he knew one way or the other, but he said swollen lymph nodes can be a wide variety of issues. He wanted me to get a copy of my CT scan and then he would take a look at it along with a cardiothoracic surgeon he knew and thought the world of.
So, once again, on back-to-back days, Anna-Marie and I are feeling hope. Maybe this was a false alarm. Maybe I had something other than cancer. We got the CD of the CT scan and brought it over to him, and while talking to him, we got the sense that there was some hope that it was more likely sarcoidosis than cancer, since I had nothing but a cough.
We were starting to get excited again, and that feeling of hope made falling asleep Friday night easy.
I got up Saturday—bright and early at noon—and wandered downstairs.
I had a voicemail from the surgeon, so I immediately gave him a call back.
Tim, I talked with [the cardiothoracic surgeon]. He had a chance to look at your CT scan. He thinks it’s best for you to meet with him Monday, and then he’ll perform a mediastinoscopy Tuesday.
His tone was less upbeat than when we talked the day before.
Once again, I was picking up a read.
And, for the first time in two days, this wasn’t a good one.
OK,I said. Did he say anything about the CT scans?
Tim, you know what you could have. But, no one will know for sure until we get tissue. So, he just needs to get you in there and perform the mediastinoscopy.
And with that, I was depressed again.
It wasn’t just the words.
It was the tone.
And this was family.
He didn’t have to say it, but I knew that he had seen the CT scan as well, and he had talked to the cardiothoracic surgeon, and they both thought I had cancer.
I’ll tell you what: you can’t put a price on hope, but you know it’s awfully expensive when you feel like you’re losing it.
Wednesday was hell. There was the phone call, and the ensuing sadness. The first part of Thursday was also hell, but once we got a bit of hope, Thursday wound up being OK. More hope Friday. Friday was OK.
But, after that phone call Saturday, hope was flying back out the window, and the sadness set in.
It was now 12:30 on Saturday afternoon, and I was going to have to find something to do to kill time until Monday morning when I’d have my pre-surgery meeting with the cardiothoracic surgeon.
The waiting, as it has been sung by Tom Petty, is indeed the hardest part.
Anyone who has been down this road can vouch for that.
I hope, however, you have no clue nor will you ever have a clue what I’m talking about.
After going to get Anna-Marie an anniversary gift and then wandering around the grocery store, I returned home to just sulk and sit on the couch. My parents, brothers, sister, sister-in-law, and mother and father-in-law were all coming over in a few hours to watch the Missouri-Syracuse game.
But, in reality, everyone was coming over because of the situation.
And while I was looking forward to it, when everyone got there and was hanging out, I found myself getting more sad.
I was thinking, All of these people are here for me. But, all of these people are hurting because of me.
Maybe if I had some shitty family members or shitty in-laws, I wouldn’t have felt so badly.
But, I’m so fucking lucky to have this incredible wife—who happens to have incredible parents—and this incredible family—all full of just great character people—that it broke my heart to think of what pain I must have been causing them.
Switching the pronouns on the great Dolph Lundgren’s Ivan Drago in Rocky IV, If I die, I die.
That’s how I felt. If this cancer was going to take me down, it would do so with a battle, but if I died, I died. I could handle that.
But, I couldn’t handle seeing these people who were in my home hurting.
It made what was supposed to be a fun night a sad night for me. I think everyone else had a good time, but I couldn’t enjoy it as much as I thought I would.
It was supposed to be a distraction. Instead, it became a reminder of the most difficult part of the whole situation for me.
Sleep wasn’t as easy that night.
And Sunday was torture.
Nothing to do.
No one coming over.
Waiting to go see my surgeon on Monday.
And, as noted above, waiting was the worst, because that’s when my mind would go wild with batshittery. I’d think of the worst possible scenarios, and I’d spend my free time—which was the entire time—reading stories on lymphoma, reading community forums with lymphoma patients, and trying to find out what celebrities had lymphoma and how they were doing, or did.
NHL legend Mario Lemieux was the one guy I kept going back to. Surprisingly, there aren’t a lot of celebrities with lymphoma. Some may have it and elected to try and fight it privately, but contrary to what I expected, the list was really limited to Lemieux, Michael C. Hall from Dexter, Jon Lester of the Red Sox, golfer Paul Azinger, and Ethan Zohn, who won Survivor in Season 2 and has since become prominent in the cancer community because of starting up a foundation with his winnings and serving as a spokesperson.
Other celebrities didn’t have it. They had it, and it got them. Joey Ramone. Sen. Arlen Specter. Roger Maris. And, Jackie Kennedy Onassis.
Lemieux’s story, however, was the most encouraging. I mean, he was diagnosed in January of 1993, and he was back on the ice—and led the league in points—three months later. I knew he was still around and doing just fine, and so that was the guy I would keep reading about.
Of course, Lemieux was a world-class athlete, and I was an AM radio talk show host, so there was a good chance he was in better shape when he got diagnosed.
I kept reading that getting yourself in good shape through eating right and yoga were a couple of things lymphoma patients would make sure to do. I feared my days of White Castle were over.
But, I feared the mediastinoscopy that was to come Tuesday a bit more. First, we had to meet with the cardiothoracic surgeon who was going to perform it on Monday.
Monday, November 19th.
Our First Anniversary.
We were supposed to spend it in Florida at the exact spot we had gotten married.
Instead, we were driving to the hospital to meet with a cardiothoracic surgeon.
We sat down in his office, and he turned his computer monitor toward us. On that monitor was my CT scan, and he showed me where my lymph nodes were, and just how abnormally large they were.
It was the first time anyone had described anything about my body as abnormally large.
Lymph nodes, he explained, are usually about the size of a Skittle. Mine were the size of walnuts. Not good.
Because the surgery we were there to discuss carried a 1% chance of causing me to lose my voice, Anna-Marie, my Mom, and Anna-Marie’s mom all wanted to see if there was any way they could get enough tissue to diagnose me without doing this procedure.
The doctor said no.
If I was to do a procedure other than a mediastinoscopy—if someone were to excise a lymph node from your shoulder for example—and it came back saying you didn’t have cancer, I wouldn’t believe it.
So, what are you saying?I asked, even though I had a feeling that I already knew the answer.
I’m saying that I think this is cancer.
That’s what I thought he was saying.
It would be pathological to not have this procedure,he said. These lymph nodes are not right. If I were to see this CT scan three times this week, two of the three people would have cancer.
And then the defining statement: Looking at this CT scan, this is textbook lymphoma.
Well, that laid it out pretty clearly.
I asked him what made him so confident.
He said succinctly, 12 years of practice.
He then went on to say, It’s a solid chance it’s cancer. But, it’s also a solid chance it’s not. It could be sarcoidosis. It could be a fungal infection that some people get in this region of the country.
Knowing that sarcoidosis was quite rare for white males, I followed up with a question.
How many white males have you seen with sarcoidosis in your 12 years of practice?
Even though he was giving us bad news—although it wasn’t really news anymore, but it sure still was bad—we really appreciated the time he was spending with us and the tact with which he was handling the situation.
Once we got done with the really serious part of the conversation, he said, So you guys were supposed to be in Florida today?
Yep. It’s where we got married. Today is our First Wedding Anniversary,I said with Anna-Marie sitting near me.
Surprisingly, that really seemed to catch him.
I mean, here’s a guy who performs incredibly difficult surgeries—of all the surgeries he performs, only two are outpatient procedures, one of which is a mediastinoscopy—and the fact that we were sitting there getting this news and planning a biopsy on our First Wedding Anniversary clearly bothered him.
Now, I’m not saying he was breaking down or anything like that. It’s just something that stopped him for a moment.
Oh, no. Today is your anniversary? Your First Wedding Anniversary? I’m so sorry you have to spend it here,he said.
We appreciated the sympathy. At that point, after five days of it, we were kind of numb to the whole deal. Either way, we liked this gentleman, and we felt quite comfortable with him, and considering he was going to be cutting me open in less than 24 hours, that was important.
After getting details on what time I needed to be at the hospital and how long the procedure would take place, we left and tried to salvage our day.
We went to LeGrand’s to get some sandwiches. I’m a huge fan of that place, and it’s just a few blocks from where I grew up and where my parents still live. I think I intentionally/unintentionally picked LeGrand’s, because I just wanted to tell my Mom face-to-face what the surgeon had just told us. But, she wasn’t home.
She was over at my brother’s place babysitting her one and only grandchild, my goddaughter. So, Anna-Marie and I decided to take our sandwiches over there and hang out with my Mom and Molly.
At this point, I was in this incredibly unique/miserable/surreal situation of attempting to celebrate our anniversary, all while counting down the hours to when I would have a serious surgery, which would then lead to counting down the hours to finding out the results.
It was important to have distractions, but it was more important to try and give Anna-Marie as good of a day as possible considering the circumstances.
So, after hanging out with my Mom and being amused by our niece, we decided to go see Lincoln. I had really been looking forward to seeing this movie ever since I saw a commercial for it.
But, as it turned out, my mind wasn’t present in that movie theater. In a dialogue-heavy film—which I usually love—my thoughts wandered to the mediastinoscopy the next morning, and the dread of having to wait for that phone call with the results on Wednesday.
Therefore, I didn’t care for Lincoln. But, my review is rather tainted. I wasn’t locked in. As a matter of fact, I was more depressed leaving the film than I was going into it. Not sure why. But, Anna-Marie felt the same way. We didn’t like the movie, and we were not doing so well.
You know how you hear people say, You got to make lemonade out of lemons.
Yeah, I don’t do that.
If I’m in a shitty mood, that’s that.
If I don’t like a situation, I’m going to work to get out of the situation, not make the best of it.
In this case, however, I couldn’t get out of the situation. I had no control.
It was our anniversary, and in about 12 hours, I was going to be arriving at the hospital for surgery.
Both of those things weren’t changing.
So, I guess I made lemonade, for once.
I told Anna-Marie that I thought it would be good if we got out of the house and went to dinner at Kemoll’s. We both love the restaurant, and I thought a good feast at one of our favorite places would be best for our anniversary considering the circumstances.
The less sitting around the house and sulking, the better.
And so we headed Downtown and, outside of my pure rage over The City’s continuing inability to time their motherfucking stoplights when the only thing crossing the intersections at night down there is tumbleweed, we had as good of a dinner as you can have in that situation.
As awful/odd/sad as it may sound, the week Anna-Marie and I were having made me appreciate our marriage even more. She deserved—at the very least—a night out on our anniversary. As a matter of fact, she deserved much more for the care she had given me every single moment since I told her what my doctor told me.
And, we did our best as we sat there overlooking The Arch.
We were talking and screwing around with our usual odd banter, but we also looked around the restaurant at the other people having dinner.
Look at them,I said. They have no idea how lucky they are. They may have problems at work or problems at home, but at least they don’t have cancer.
It was so damn difficult to think that a year ago—to the fucking day—we were sitting with our closest family and friends and having the best night of our lives in Sanibel.
And 365 days later, the world had changed, and we had no idea what the future would hold.
Would the chemotherapy make it impossible for us to have kids? Would her life be reducedto just taking care of me? And, would I even be around much longer?
Awful questions, but real thoughts that crossed our minds.
Anna-Marie kept saying, Well, even if they call us and tell us it’s lymphoma, we’ve already experienced that before, so we know we can handle it.
But, I was not doing so well with that idea.
The nonstop rollercoaster that started with the phone call and went for days with moments of hope followed by moments of despair—and all the waiting in between—was getting to me.
As odd as it may sound, all I wanted to do was get to the hospital, so they could cut me open and figure out just what the hell was wrong.
That moment arrived when the alarm went off at 5:15 a.m.
Tuesday, November 20th.
We were to be at the hospital at 6 a.m.
Maybe I’m too trusting, but I wasn’t really worried about the surgery at all. I was more worried about what would come after it, the waiting for the phone call and the defining moment of the diagnosis.
It was the second time I had gone underfor a surgery. But, in my procedure in 2006, I was having a septoplasty to fix my deviated septum. But in that case, I was going through it to improve something. In this case, I was going through surgery to confirm I had cancer and determine what kind of lymphoma it was.
Suffice it to say, this one was—at least mentally—much worse.
We arrived in the waiting room, and it’s full of people. Some will have surgery in a matter of hours. And the others are there because of those who will have surgery in a matter of hours.
They called me back, and Anna-Marie went with me.
I got into that get-up that you wear when you have surgery—I’m going to call it a nightgown, because I’m an idiot—and laid in the bed.
It was just me and Anna-Marie. It was peaceful.
Are you decent?
That question was screamed from behind the curtain separating my little room and the rest of the area. I said yes, and the curtain was immediately ripped opened.
Within 30 seconds, five or six people were in there doing all kinds of things, asking all kinds of things, and preparing me for the mediastinoscopy.
While I was being hooked up to a variety of devices, my cardiothoracic surgeon came by. He explained the time breakdown of everything. It was around 7:25. He said they’d administer the anesthesia around 7:45. He’d make the incision around 8. And, I should be up around 10.
The anesthesiologist came in and talked with me. He was an outgoing and amusing gentleman.
He explained that he would be wheeling me down to the operating room, and so I kissed Anna-Marie and told her I loved her, and off we went.
I recall the anesthesiologist talking about the Rams-49ers’ tie as he wheeled me around. We went from a busy area with a bunch of people around through some doors to where it was quiet, and looked like a spaceship with no one talking and everyone’s face covered up.
I got into the operating room and was wheeled up next to the table where they’d conduct the mediastinoscopy. They asked me to move from my bed to the operating table bed and let me know it would be warm when I laid down.
I did so, and it was warm, but comfortable.
The anesthesiologist was still talking, and I was still talking.
Back in 2006 when I had my septoplasty, I remembered the anesthesiologist had been doing the same thing, and then next thing I know, I heard him in the middle of our conversation say, Good night.
And I was gone.
It was like the end of The Sopranos.
So, I was thinking of that as I was lying there, that whole good nightthing.
They put a mask on my face and told me to breathe it in.
I guess I didn’t breathe it in well enough.
I was asked to breathe it in better.
And then I heard it, again.
Next thing I knew, I was waking up in the recovery room. No family around. Just a bunch of nurses and people who had just come out of surgery.
Unlike 2006, this time, I felt nauseous.
So, once I communicated that fact in something that had to sound similar to Sylvester Stallone’s conversation skills in Rocky V, they kept me in there longer and gave me something in my IV to counter the nausea.
Because of this, there was a delay in getting me back to the normal area(these are all official medical terms, according to Journalism School attendees), and so Anna-Marie was beginning to worry. It was well past 10 a.m. before I was back to the normal area.
Finally, I got back to the normal area.
And that’s when Anna-Marie, my Mom, and Anna-Marie’s parents could see me for the first time since surgery.
I was starting to know what was going on around me, but I was still a mess. Sources tell me I was drooling when they first saw me, so that’s hot.
They wanted to give me Vicodin, but they needed to get some food in my stomach before I could take it.
So, in the first moment of experiencing the pain from the surgery, Anna-Marie sat next to my bed and fed me a Nutri-Grain bar in tiny pieces like I was about 18 months old.
When I swallowed that first piece, it wasn’t a particularly pleasant feeling.
But, I was able to communicate, so that meant my voice wasn’t gone from the surgery.
Eventually, after probably 15 minutes, I got the Nutri-Grain bar down, and I was able to enjoy some Vicodin.
People kept coming into my little room and looking at me like I was a zoo animal. All I could do was barely raise my arm and make sounds.
But, after a couple of hours, I was good enough to go home, and so at around 12:30, they wheeled me out of there, and it was time to head home and begin the waiting process. At some point, likely in the next 28 hours, I was going to get a phone call that would determine the direction not only my life would go, but the lives of many other people close to me, many of whom thought I was in Florida celebrating.
When I got home, I was exhausted. At around 1 p.m. I got into bed, and slept until 7 p.m.
When I woke up, I was still out of it, and my throat still hurt, but I wanted to make sure I did one thing: text my family member who was friends with the surgeon to let him know that if he got the results the next day—the day before Thanksgiving—to let me know. He wouldn’t be doing me any favors such as saving my Thanksgivingby sitting on the information until Friday or the following week. So, even if it was the worst news, I wanted it before Thanksgiving, meaning I wanted it the next day if the results came back.
He responded and said, OK. I will let him know.
Considering they had gotten the lymph node out of me during surgery by around 9 a.m., I was pretty sure that they’d have the results Wednesday.
So, now it was just time to wait, and hope.
Despite going to bed at 1 p.m. and sleeping for six hours, I was able to fall asleep, all while knowing that the next day of my life would be one of the most defining ones I’d ever experience.
When you go on cancer forums—lymphoma forums in particular—the people who are posting there all have their type of lymphoma and their diagnosis date as their signature.
I woke up on the date that would be my signature at around 9 a.m.
It’s a rather odd feeling to wake up and take that first step out of bed on a day that—no matter what happens—you know you’re going to remember the rest of your life.
November 21st, 2012.
Anna-Marie was at work.
And, I was all alone.
But, that’s the way I wanted it.
When that phone call came, I didn’t want anyone to have to be there and witness it.
It was already bad enough. I didn’t want them to have that visual of seeing me when I got the news, the details of the lymphoma, and the next step as far as when I’d begin chemotherapy.
So, I wasn’t leaving the house.
It was just me and that phone, and time.
I sat down on the couch and began the wait.
It’s quite a helpless feeling. Whenever that thing rings—and it, of course, could come at any moment—whatever the voice on the other end will determine the course of your life for the remainder of your life. Not a damn thing you can do about it.
You just wait.
, at 9:30, the phone rang.
It looked like the hospital’s number, and it was.
This is the doctor’s office. We just wanted to check on you and see how you were doing after the surgery.
It’s the first time I received blue balls with no one else around.
They weren’t doing anything wrong, but when I saw that phone number pop up on my phone, and when I answered it and heard it was indeed the hospital, I thought that was it.
And it wasn’t.
So, back to waiting.
I flipped through the channels, trying to find a way to kill the time. I have no idea why, but I wound up switching to one of the movie channels and It Could Happen To You with The Great Nicolas Cage and delightful Bridget Fonda.
For those of you who don’t remember this piece of film history, it’s about a New York City police officer who’s in an unhappy marriage to a woman played by Rosie Perez. Cage’s character doesn’t have money for a tip one day at Fonda’s restaurant, but he does have a lottery ticket. And so he promises her that he’ll split the winnings with her if he happens to win the lottery that night.
Well, guess what happens,
Cage and Perez win the lottery. Cage is a man of his word and gives half to Fonda. Perez is pissed and now interested in banging the guy who played Shackelford in Indecent Proposal. Cage and Fonda fall in love. Hilarity ensues. Romance abounds. And even after Perez gets to keep all of the money in the divorce, New Yorkers feel so badly for Cage and Fonda that they send them a bunch of money in the mail.
The premise of the story seems rather absurd.
So, I suppose it’s fitting that I was watching it.
But, when it was over, it was still only 12:00. Anxiety was high. And time was moving slower than ever.
I decided to call my Mom and see how she was doing.
Not surprisingly, she was upbeat.
I don’t know, I just have a feeling everything is going to be OK. I don’t want to tell you why, but I just have a feeling, and then her voice would trail off, like she had something she wanted to tell me, but she didn’t want to say it, for fear of a jinx or something. Something was up, but I didn’t know what.
She kept inviting me to come over to their house, but I just didn’t want her to have to be there when I got that call. I didn’t want her to always have that visual.
So, I stayed at my house, and went back to the couch, to just wait.
At around 1 p.m., the doorbell rang, and it was my mother-in-law. Now, I know it’s a running joke for people to rip their in-laws, but I’m incredibly lucky in that my in-laws are such kind people. And, in another example of that kindness, my mother-in-law had shown up on her own, because she couldn’t stand the idea of me being by myself on this day.
So, we sat and talked, and waited.
Nothing else to do.
And then, at around 2 p.m., the phone rang.
It looked like the hospital again.
This had to be it.
Hey, I’m calling you from work, because I don’t have my cell phone.
It was Anna-Marie, and the first three numbers of her work are the first three numbers of the hospital.
She of course wasn’t doing anything wrong. It was just terrible timing, and one hell of a coincidence that her work number—which she had never called me from before—was so similar to the hospital’s.
She just wanted to check on me, because she hadn’t heard anything yet, and because since—obviously—she didn’t have her cell phone, she didn’t know if I had gotten the call yet.
So, now at this point, I’m wondering if I’m even going to get the call before Thanksgiving. It’s 2:30, and it’s the day before a holiday, and a four-day weekend. Maybe the people who would analyze my biopsy weren’t around. Maybe my surgeon was gone for the weekend. And maybe both my family and I were going to be waiting for five days until at least Monday to find out.
My mother-in-law and I went back to talking on the couch. We were talking about whether or not I had kept details of this week, and I told her I had indeed begun a journal. I said that I always regretted not keeping a journal when I bought the insideSTL.com domain back in July of 2005, so for this odyssey, I was going to make sure I did, even if it ended in the saddest way possible.
Just as I was saying that,
, the phone rang.
This time I knew it was the hospital.
And this time, I knew it was the call.
I looked at the phone and said, Well, here we go.
I got up and began to walk away from the living room, because I didn’t want my mother-in-law to see the reaction.
This time it was a male voice. It was the cardiothoracic surgeon. Nearly to the minute, one week after getting the first phone call, it was finally time for the verdict.
How are you doing?
Fine. How are you?I asked as I walked toward the front of my house and away from sight as quickly as possible.
Good,he responded. And then he paused before saying simply, No cancer.
The two most beautiful words I could hear.
I had been walking, and when I heard those words, it took the air out of me.
I crouched over, unable to stand for some reason, and the tears started to flow.
Nearly one week to the minute of getting the worst phone call I had ever gotten, I received the best one.
The emotion was overwhelming. The feeling was euphoric. My body was numb. And for the life of me, I couldn’t stand up.
I was thinking as a First Anniversary gift, I could fax the pathology report over to your wife,he joked.
It was on that pathology report that it said, no malignancy.
He kept talking, but I just kept saying, Thank you, thank you, thank you,like I was John Kelly on speed.
I don’t think we scared you unnecessarily. That CT scan really looked like cancer, but it’s likely sarcoidosis. So, this is the kind of phone call that I’m happy I get to make.
I thanked him probably about 300 more times and got off the phone.
My mother-in-law could tell by the conversation that I had gotten the shocking good news phone call, and she was crying as well.
By the time I got off the phone, I noticed I was lying on my steps like something a one year-old would do when he’s protesting having to go to bed. I was just lying there, stunned, immobile, overjoyed.
I embraced my mother-in-law and said, I got to go.
She knew exactly where I had to go.
I got in the car and headed up to Anna-Marie’s work.
In the meantime, I called my parents and told them the news. That was one of the best calls that I’ve ever had a chance to make.
I guess it’s not always bad when your Dad cries.
And, as it turns out, my Mom did have a reason why she was confident everything was going to work out. More than 20 years ago, there was a potential serious family medical situation. My Mom, who is quite religious, went to Mass. She was quite concerned. And, then the first reading was from Jeremiah Chapter 29 Verse 11:
̃For I know the plans I have for you,’ says the Lord, ̃plans for welfare and not for evil, to give you a future and give you hope.’
My Mom said that when she heard that reading decades ago, she became calm and knew everything was going to be all right. She never forgot that moment.
So, what happens when she goes to Mass after I told her that I had cancer?
She’s sitting there, listening and praying, and what does she hear in the first reading 20 plus years later?
̃For I know the plans I have for you,’ says the Lord, ̃plans for welfare and not for evil, to give you a future and give you hope.’
That was it for her.
She told me that when she heard that reading five days earlier, she knew I was going to be all right.
When I got to Anna-Marie’s work, I saw her immediately. She didn’t see me until I got to just a couple feet away from her.
When she saw the look on my face, she knew.
I grabbed her, and like the week before , I just held her.
We were standing in the middle of her workplace, and really couldn’t care any less.
I’m not sure how long we stood there like that. I just remember we didn’t say much. Probably couldn’t. But definitely didn’t need to.
I—but really we—had been given a second chance.
All I had back was exactly what I had eight days earlier, but because of this experience, it made me infinitely more grateful for those things.
It’s hard to explain. I mean, you can write those words, but until you’ve actually lived it, you have no idea how grateful you are for your health, your family, and, just in general, life.
The best analogy I can think of is Charles Dickens’ A Christmas Carol. Now, while I do run a business, I don’t think too many people would make the Ebenezer Scrooge comparison. Based on the number of producers I have on The Morning After, I think more people would make the MC Hammer comparison. And, coincidentally, there’s a character named Tiny Tim in the book. Do with that whatever you want. That’s free material for you.
But, the reason I draw comparison to A Christmas Carol is that for one week when I thought I had cancer, I was in a state of reflecting upon the past with great nostalgia, observing the present with great sadness, and wondering about the future with great fear.
All I wanted was to wake up from the nightmare and have everything be back to normal, just like the main character in A Christmas Carol. I think that story is so timeless, because everyone can relate to the experiences of Scrooge in some capacity: The happiness of the past, the challenges of the present, and the fear of the unknown that lurks in the future.
And I think many of us would love to have the experience he had in the story: The ability to do it all over again, the ability to make changes now, and therefore the ability to make a better future.
Even though I wasn’t visited by ghosts like Ebenezer Scrooge was, I sure as hell was scared. But, in the end, I got the same amazingly good fortune.
I got to wake up on Christmas morning (Thanksgiving morning in this case, which just happens to be my favorite holiday) with an appreciation for the simplest yet most important aspects of life: family, health, and happiness.
It was the perfect Thanksgiving.
About a week later, I had another conversation with my cardiothoracic surgeon. He said whatever I had did indeed look like sarcoidosis, and in talking to a couple of different pulmonary specialists, it’s the kind of odd sickness that in most people just pops up and then goes away. 90% of the patients with sarcoidosis they see don’t even receive any treatment. That’s not to say that it can’t be serious. It’s an illness that can destroy peoples’ lives. It’s not completely understood. But, it’s unique in the sense that it can be serious, or it can just pop up and then go away. Fortunately, my symptoms at this time are nothing more than a cough, and after doing numerous tests, the sarcoidosis hasn’t spread. My doctors expect it to just go away soon.
My cardiothoracic surgeon also informed me that my CT scan had fooled his fellow surgeons. At their weekly conference, they showed my CT scan. Apparently, my lymph nodes were that messed up, and the CT scan was that dramatic. So, when they showed the surgeons the scan, they all said, That patient has cancer.
Then they showed them the pathology report stating that I don’t have cancer, and they were all shocked.
It sounds like I was much more likely to have lymphoma than I realized.
And I have to be honest. I feel some form of guilt. I wasn’t even sure I wanted to share this story with the listeners of the show and the readers of the site because of it. I got lucky. I didn’t do anything special. I just got a horrible phone call. A horrible phone call that so many other people—so many other families—have gotten. But, I was one of the few who got the second phone call. The good phone call. And, I feel guilty about that.
When I read about Chris Duncan, when I read about his mom, when I read about Clare Blase, when I read all of these incredibly sad stories of people battling cancer or passing because of it, when I hear about the devastating impact cancer has had or is having on families of my friends, it crushes me emotionally.
Wonderful people going about their lives, and then with one trip to the doctor, everything changes.
And while I can speak to the horrors of the first chapter of the story, I can’t speak to the rest of it. But, after sharing this story with the people closest to me and debating whether or not to tell it publicly, everyone said I had to. My brother Kevin, who is regularly thanked at the end of every show for no particular reason, cited one of his favorite writers in explaining why I had to. From Kurt Vonnegut:
“When you get to my age, if you get to my age, which is 81, and if youhave reproduced, you will find yourself asking your own children, whoare themselves middle-aged, what life is all about. I have seven kids,four of them adopted.
I put my big question about life to my biological son Mark. Mark is apediatrician, and author of a memoir, The Eden Express. It is abouthis crackup, straightjacket and padded cell stuff, from which herecovered sufficiently to graduate from Harvard Medical School.
Dr. Vonnegut said this to his doddering old dad: ‘Father, we are hereto help each other get through this thing, whatever it is.’
My hope is that revealing one of the most difficult and personal weeks of my life will help some people.
Help them think twice about any minor ailments they may be having, and be aware that a perfectly healthy 20 or 30 something can get hit by cancer. If this story leads to someone going to get checked out when otherwise they wouldn’t have, then I’m all for it.
Help them appreciate what they have. No matter what, even if someone tells you it over and over again, you can’t have full appreciation for your health until that very health is threatened, or perhaps taken away. It’s like when an older person tells you when you’re a child to enjoy these times, because they’ll go away quickly.But, perhaps over the holidays, if you’re fortunate enough to have your health and have the health and love of your family around you, take that moment in and appreciate it. When all hell breaks loose, it’s those people who will be there for you.
And, finally, as I learned throughout my week of thinking I had cancer, I’ll say it again: you just can’t put a price on hope.
Even when you think it’s over, even when you think every moment you have will be occupied by the idea that you have cancer, even when you think your future is one of chemotherapy, radiation, and long odds, there’s still that hope that it can get all back to the way it was before that trip to the doctor.
And if you can get through and get back to the other side, you’ll have an appreciation for life that will make the everyday problems you used to sweat seem laughable…and the everyday experiences that you used to take for granted seem beautiful.
This story is proof that the doctors’ analysis isn’t always right, and that the long shot can come in for a victory.
I’m in no position to give advice, and I loathe when people tell me what to do or what I should do.
But, if there’s one message to take from this story, it would be to not give up hope.
Hope didn’t fix my body and take cancer away, but hope did get me and my wife through that week of hell. And it was hope that gave me the feeling in the back of my mind—while it was all going on—that maybe, just maybe, instead of having to get on the air and tell you that I’d have to go away for awhile, I’d instead get to explain my Mom’s stupid City Slickers reference, and how she couldn’t have been more right.
It was the worst week of my life.
And, it was the best week of my life.
Log-in to post your comments, or you can email me at firstname.lastname@example.org. Because of the personal nature of this column, if you have something negative to say, I’d ask that you refrain from doing so in the comments section or on the insideSTL message board. However, you’re more than welcome to email me. I also want to encourage people with questions about the illness or anything else to feel free to email me.