Hodgkin's: One Survivor's Story, Part I: What Is It?

When I had Hodgkin's Lymphoma, it helped to talk to other people to know I was not alone.  When I went into remission, other people starting their journey were helped simply by talking to me.  I was amazed by that.  The internet is full of information.  I hope in that cybersea, I can somehow be of help.

So this is my story - a survivor's story.  It was 1990.  I was 22.  I was a student at Arizona State University and a part-time reservation agent for an international hotel company.  I was still much of a child: helpless, very dependent on my parents.  As for the cancer, somehow I think I should have put it all together, but at the time there were different things going on.  Little did I realize (or perhaps want to realize) that they were all leading up to the same conclusion.

The first sign was a cough.  That was fairly easily dismissed.  Several things that I’ve had in my lifetime have caused a cough, most of which were minor.  The cough persisted but it became like I was used to it until the fall.  That’s when the cough awakened me from sleep.  That really scared me, but I was able to put it out of my mind.  I also would lie down after a full day of class (Monday I remember being the worst that semester) and would cough.  It started hurting in my lower left side, right around the bottom of the lung area.  That somehow was actually easy to dismiss as something serious.

The next warning sign was a loss of weight.  The first person to notice that was Mom, but it was so easy to dismiss her worries.  That was her job.  The next person to notice was my boss.  That was somewhat easy to dismiss.  I also remember that I lost so much weight that I would sit down in the hall at school and remember it being uncomfortable because I was resting on my bony butt.  But did that signal anything????  No.  I showed up to a friend’s wedding, and people remarked how much weight I had lost.  Finally, there came to be that realization that something was seriously wrong when I pigged out at Thanksgiving, gained 3 pounds initially, and lost that much plus more.  I was losing weight rapidly.  By November, I was 138 lbs., and I knew my normal weight to be 160-170.

There was another thing that I really couldn't deny, but tried to.  About September, I remember taking my shirt off and looking at the bathroom mirror in my apartment. I noticed a lump on the upper left hand side of my chest.   I was horrified.  That was a lump I couldn't explain away.  I was scared.  I didn't want the explanation.  I knew it was cancer.  I didn't want to be told that.  Instead, I tried to explain it away as some sort of muscle relocation, from leaning on tables and desks a little too much.

Around Labor Day weekend, I started getting a nightly fever of 100 degree.  I would have many more nights of fevers.  This was remedied by taking an Alka-Seltzer Nighttime Cold, which would not only help break the fever but also help me sleep as well.  This went hand-in-hand with the night sweats I had that fall which were becoming more and more frequent.  They felt like somebody poured water on me.  I remember reading on some little symptom chart that my parents had that it was the sign of “a serious pulmonary disorder”.  Well, hell if I want to find out what that was.  I had dismissed it because – you know – I turned on the waterbed heat too high.  Ah, but did I mention the night sweats soaked my clothes and sheets?  Yet another sign something was wrong, but I still didn't want to know what it was.

Denial was powerful.  There might be those that criticize and say, “You idiot, if you knew there was something wrong why didn't you go sooner.”  Some would say they would go right to the doctor.  With me it was different, for two separate reasons.  First, I had always been a hypochondriac up until that time.  Every little symptom was something horribly wrong.  When I graduated from high school, I got a lot of headaches and I had thought I had a brain tumor!  Obviously I didn't,  but that was how catastrophic my thinking could get. So maybe I just learned to live with it or tune it out and maybe that’s why all the danger signs were so deniable.  Second, this didn't go with any portrait of a 22-year old.  How does a 22-year old kid get cancer? 

Over Thanksgiving weekend, my parents urged me to go to the Urgent Care Center on campus after the holiday to get the cough checked out.  It’s easy to say now that I’m glad I got myself checked out, but at the time I thought much, much differently.  This doctor's name was Dr. Friedman.  We sat down in his office and I explained my symptoms, and I think I downplayed them a little bit.  I remember what Dr. Friedman said, “The problem with coughs, Dave, is that they don’t go away.”  I read his writing, even though it was upside down from my viewpoint:  “Viral bronchitis.”  I was relieved.  A little antibiotic perhaps, and the whole coughing mess that had been bothering me would go away.  Just don’t show him the lump.  Yes, I didn't want to know.

Then the doctor made a call that no doubt saved my life.  It horrified me at the time, but I think now that I’m forever grateful.  He had a chest x-ray taken.  What happened after the x-ray was taken is a little fuzzy.  But I remember another doctor was summoned, and they talked behind closed doors.  This is bad, I thought, as I waited alone in Dr. Friedman's office.  I was really scared.  What exactly was said is again fuzzy, but I remember that they had said the chest x-ray revealed a white spot, which meant my lung wasn’t getting any air.  Then they said that I should spend the night in the hospital.  I know I must have turned white.  Then, in the midst of my “Awshit moment”, they started asking me “personal questions”  do I have sex with men?  I knew they were trying to figure out if it was AIDS, because I had said that I had night sweats.  I didn’t even have sex with women.  I'll admit now what I wouldn't admit then: I was a total virgin – no sexual contact whatsoever.  So cut that shit out, guys ‘cause you’re barking up the wrong tree.

I don’t remember much after that.  I don’t remember what happened to the other doctor but Dr. Friedman was calling a pulmonologist buddy of his so that I could get checked out that day.  Then I remember the Doctor parading me around and showing me to the other doctors like a dog who can do cool tricks.  Each doctor had his own comments.  Looking back on it, I wish I could have been treated like a human being and not an exhibit but two factors existed at the time: 1) I was not too assertive and; 2) I was in a state of shock.  I got handed my X-rays so that I could take it to the pulmonologist.  Dr. Friedman’s last words to me were that he was glad that he took that x-ray and that he realized I wasn’t.  He said that I was young and that was in my favor.  That rang hollow at the time because something was seriously wrong with me.  But he did the right thing with one simple X-ray, and I’ll never forget him. For the rest of my life I will be indebted to him, because he gave me the rest of my life.

Somehow I remember getting back to the apartment.  I was told by the doctor who Dr. Friedman conferred with advising me not to call my parents because he said there would be a lot of questions and no answers.  Looking back on it, he was right but I needed somebody to lean on because I felt alone and scared and I couldn’t go through with it that way.  So when I got home, I called my parents.  My dad was going to meet me at my grandfather’s then we were going to go to the pulmonologist.  My grandfather didn't live too far away.

We got to the office.  I was not too keen to see another doctor, having seen many of them earlier that day. But the office was closed and I had to wait another day.  I remember thinking that in times of life and death, doctors still kept office hours.

I don’t remember what happened when I got home.  It’s all too very fuzzy.  I remember my parents looking at my x-rays and trying to decipher what they were showing.  Somehow Dad got on the horn between that night and the next day and set up an appointment.  We wouldn’t be seeing the pulmonologist Dr. Friedman recommended, but a partner of his.

At that office, I went through a bunch of breathing tests.  I just remember the one where the tech or nurse or whoever did that coaching: “BLOW!” she said, so that I would blow as hard as I could.  It turned out that I was using something like 50% lung capacity. The doctor ordered a CAT scan.  I thought and actually voiced, “What about work?”  My Dad in no time got me to reconsider. I was avoiding.   I just didn’t want to be dragged into this test.  What would they find?  I didn’t want to know.

So the next day was Wednesday, and CAT scan day.  I was terrified.  I went in, and the tech instructed me to put on the gown.  Apparently, I thought that was all I should have on.  I was so nervous I wasn’t sure.  And I remember asking the tech something about that and her laughing at me.  I thought, "Look, you have a 22-year-old kid who’s scared out of his mind and doesn’t know what he’s doing.  Do you think young people like this have any clue about what goes on with a CAT scan?"  Come to think of it, nobody explained what was going to happen.  All the instructions happened when I went into the exam room.  It was just laying still and being told to “BREATHE” at various intervals – about 30 of those intervals.  I’m a CAT veteran now, but man I had no clue at that time.

At some point during this time I can remember me being very nervous.  My knees would be knocking.  I’d just like to know what the hell this all is.  I mean I was ready to take in bad news.  At the time, it would have seemed better than not knowing.  So I went from full denial to at least partial acceptance.  It wouldn’t be full acceptance yet, though.

The next day, I remember the pulmonologist calling at about 10:00.  He said that I had “something” beneath my breastbone, and that if he went into the lung, he wouldn't find anything.  OK, that was nice and vague.  Then he asks for a preference for a chest surgeon.  What the hell was going on?  I said I had no idea, I was kind of paralyzed at that point.  Then he asked if my Dad would know.  I said yes.  Dad called me from work not long after that.  He said there was a “growth”.  OK, growth=tumor.  Shit.  I don’t remember much from later that day.

Dad had taken me to all my appointments so far.  But now Mom has her turn.  She was certainly in touch with what was going on even though she couldn't be at my appointments.  Now, the three of us go to the chest surgeon.  He’s holding the CT scan pictures.  Dad says as if to verify, “So it’s about the size of a grapefruit.”  The doctor ever so tactfully (and I’m being facetious here) says, “Oh, it’s a lot bigger than that.”  NO.  I didn’t want to hear that.  Mom starts grilling him.  She was asking questions I didn’t want to know the answer to.  I don’t remember most of them, but I remember the last question…one that this guy probably wasn't qualified to answer because he wasn't a pathologist or oncologist…”what do you think it is?”  “I think it’s a tumor of the thymus, and it’s probably malignant.”

I thought I was a goner.  We just went out of the room, out of the office, and into the courtyard.  I sat near a planter and cried in despair.  I wasn't going to have much time left because the tumor was pretty big.  I can remember the drive home and thinking about my life that was suddenly shortened.  I would be dead within a year.  There’s not much time for anything.

The rest of the day was surreal.  I remember that I went to lay down, and Mom got on the phone to let everyone know the devastating news.  This included my boss.  I couldn’t tell him, but Mom could???  I don’t know.  Mom made a lot of phone calls to people, including my brother.  My aunt came over and I can remember her saying that this Christmas would be the time I’d always remember (it was December).  I thought, Yeah, sure.  Like I’ll be around to remember it.  I remember walking around the block, crying all the way.  I ran an errand to the drug store, and I remember that it doesn’t hurt to be pleasant, after all, nothing in life is worth getting upset about.  So I was very pleasant with the gentleman at the counter as he was ringing up my order.  I remember driving a little crazier than usual, not so much dangerous, just daring.  And I thought to myself it doesn’t really matter.  Nothing is worth getting upset over.

The next day was Saturday, I slept a little late.  Mom was decorating the Christmas tree, and I was talking to her.  She ended up recommending a book and asked me if I would be interested in checking it out.  I said, sure.  Why not?  We went for breakfast and then to the bookstore.  We picked up the book.  I’m not going to plug it because many other books can serve the same purpose for different people, but it helped change my thinking as books often do.  That maybe I can fight, that I can certainly make myself better.  I think Mom was just trying to help.

Dad wanted time with me, too.  He had missed being with me the previous day because he had a conference.  We had breakfast together, I guess.  I can remember not really having to worry about the mundane at all.  I can also remember getting very depressed when it got dark – it was December so there certainly was time for that.

         
When you’ve got a serious illness, you and others around you turn to places they don’t turn to very often.  My parents turned to some guys at church.  Our background was Mormon, but we weren’t ever true practicing Mormons.  They came over Sunday to do a blessing – a laying-on-of hands sort of thing.  This was actually the first time I’d ever seen my Dad cry.  It wouldn’t be the last.

Somehow – and I don’t remember how- I got word about when and where my surgery was.  I was to be at the hospital at 5 a.m.  No food or drink after midnight, the usual pre-surgery stuff.  That was to be Wednesday.  Until then, I really didn’t know what to expect, except for what my parents told me.  And what they told me scared me – this would be a lot like open heart surgery, or so I was told.  The surgeons would crack open my chest and get the tumor.  Because that kind of surgery was very traumatic, I’d be spending many days in the ICU with all kinds of tubes.  I would see one person at a time.
  

I had friends come over and visit one night. They gave me a gag gift, and I am sorry that I don’t remember what it was.  But there was a revelation for me for what counted most in my life.  The idea that I was a goner was at this point very much a reality for me.  I wasn't going to get married, have children, have a huge moneymaking career, be a rock star, or anything like that.  When I stripped down life to what's important, the most important things were the people in my life.  That's the perspective I gained.

Tuesday night was “surgery eve”.  I spent that evening with my parents, my brother and his girlfriend (eventually wife) at some friends of ours.  I remember being depressed, gloomy, and scared.  I didn’t know what was going to happen the next day, and I started thinking about after the surgery…and the uncertainty to come afterward, and what I thought was the shortness of it all.  After that visit, we went back to the house.  I was aware of my midnight pre-surgery mandate – no food or drink after midnight.  Dad knew this all too well – and he had me drink a huge glass of water and “commanded” me to finish it all within an hour.  When I was a kid and sick, Dad would get me a glass of juice and say “I want to see it finished in such-and-such a time” so this time I did so no differently.  What eventually happened was that I drank too much all at one time – causing me to throw up.  I remember reading about nausea and vomiting in chemotherapy, and I thought this would give me a preview of what I was going into.

I decided to go to bed earlier than everyone else.  It was 11:00.  My family was content to stay up, but I really didn’t feel like being awake and conscious.  There was a lot on my mind.  Probably because that night I started thinking beyond the surgery.  What was going to happen to me?  As I was laying down in the hide-a-bed that had become my bed in the house, my brother came in, gave me a hug, and told me he loved me.

Next: Surgery and Aftermath