Hodgkin's: One Survivor's Story, Part II: Surgery through Diagnosis

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.

I don’t remember too much of the actual getting up in the morning and going to the hospital. I was packed for a few days’ stay if I remember correctly. I remember going into the waiting room. I went to get prepped for surgery. I remember there was somebody who shaved my chest. All the time I was just nervous about going under, losing control and complications from surgery. I was scared, and I don’t really think I could absorb anything else. Two nurses took my vitals, which of course included my pulse. One looked shocked, wrote something down, and handed it to the other nurse who got wide eyes upon reading this note. Now, I wasn’t stupid. I know they were concerned about my heart rate, but I was really not able to absorb anything else. I remember getting a muscular injection. I remember it hurting more than the IV they had given me. That was supposed to be some sedative. At some point, there was a call to the pre-op room. They gave me the message: it was from my mother to remind me to “think positive thoughts”. I grinned. The tech, nurse, whoever it was immediately understood that it was “Mom being Mom."

A doctor came to visit me. He told me he was the one that gave me the sedative and they were worried about my heart rate. Again, I didn’t care. I really didn’t care this time because the sedative was kicking in. I remember feeling really great and groovy when I rolled into the operating room. All my fears were suppressed thanks to the medication. I really didn’t care about whether I lived or died. That was just the medication talking. It was time for my date with the anesthesia. I remember Dad, a veteran of many surgeries, telling me maybe a couple of days before that when he went into surgery, the anesthesiologist told him to count backwards from ten and that he didn’t quite make the countdown. Although I wasn’t instructed to do so, I took the initiative. I remember a numbness going through my body and then...

…I woke up to the words, “David, wake up. You get to go home now.” Huh? Home? What I heard was puzzling because even in my stupor, I thought I was supposed to go through some traumatic thing. They still worried about getting my heart rate down. I overheard some of the nurses talking. I had been reading medical books for the past couple of days (it was 1990, before the internet), and I was rapidly absorbing the medical terminology. It was kind of like learning a foreign language and much to your surprise, being able to pick up on a conversation. I understood that the surgery was not the crack-open-the-chest type. There was a part of me that was disappointed. I was still quite sedated and there was still a lot to absorb what was going on here.

One of the partners from my pulmonologist’s office came to check on me. He continued to belabor the old we’re-worried-about-your-heart-rate. He asked me if there was family here. I told him there was and in some stupor he had enough information to know where to find them.

Dad came in. To bring someone back who was not a part of the medical staff is an exception, but Dad was a means to help bring my heart rate down. I don’t remember whether or not this was after I saw him enter the large recovery room, but I do remember that one of the nurses were fiddling with the equipment and saying that she couldn’t get a reading. My dad sort of freaked out. For some reason I wanted to be a funny guy, so I said, “that’s because I’m dead.”

The pulmonologist gave me the respiratory equipment – that famous three-ball exerciser. But primarily, the concern was with my heart rate. Dad felt better to leave me in the hospital overnight. I didn’t care – I was certainly in no hurry. Where did I have to go?

So I get wheeled out of the recovery room and I notice my family swarm around me. My brother and his girlfriend were standing over me and I remember at that time how wonderful it would be to have a partner that could help me through this and how lucky my brother was to have such a person if something like what had happened to me had happened to him.

I remember going into the elevator to take me to my room and I remember the motion of the elevator made me nauseous. Then I was wheeled into my room and into my bed. Great – it was a private room. I then got sick and tried to throw up but couldn’t. Nothing but dry heaves. The nurse said, “There was nothing to bring up, honey.” I went in and out of a pipe dream laden sleep.

At one point, the surgeon conferred with my parents – OUTSIDE MY ROOM!!! EXCUSE ME, patient in here!!!! I tried to listen as much as I could, wanting to know what was really going on but dreading what he would say. I remember him saying that the tumor was growing outside the rib cage, and they only got enough for a biopsy. He said, “that’s what we were told to do.” My parents somehow thought they were going to try to remove the whole tumor.

That night was terrible. I could only sleep on my back. My chest was hurting from the surgery. I also remember that part of my muscle had been relocated around my neck and collarbone. It still is to this day. I started to get assertive and called for the nurse. I told him I was having trouble sleeping because of the pain. He offered a simple remedy: Tylenol. We joked that when he came by in a half hour he wouldn’t wake me up to see if I was sleeping. Nevertheless, it did the trick. I swear I have not been paid to say that!

The next day, the doctor saw fit that I was ready to go home. I thought, and then what? What happens to me now? Anyway, I returned home and gradually, the left-hand side of my torso started to hurt and I really started coughing, more so than I had been. My parents said, “no heroics” – in other words, if I felt we needed to go back to the hospital I needed to say so. I really didn’t want to go back, but the coughing and pain got so bad I just had to give the signal for us to go. We went into the emergency room of the same hospital. After the usual long wait at night, the doctor came in and went over my x-rays. He said that I had pneumonia. The cause was that usually after surgery I’m able to cough all this stuff up but the tumor was blocking all that. And that I needed to be admitted. I was dreading that. But it would turn out to be all for the best. It was about 11:00. I had a long day, and it was time for bed.

In the morning, my parents came. Not soon afterward was that “cold fish” pulmonologist. He was giving the results of the pathology report. I had Hodgkin’s’ Disease (now known as Hodgkin’s’ Lymphoma). He said it was curable but added the great disclaimer, “we can’t guarantee that.”

So now we knew the enemy. But we needed to know how to attack and what weapons to use.

I don't mind using combat terms.  I have heard that people don't like "battle' or "survivor" because it implies that anybody that dies from the disease didn't fight hard enough.  But I've heard enough World War II veterans say that staying alive was a matter of luck and not skill.  So I think the combat lingo  is still appropriate.

And thus the battle begins....

Part III

Hodgkin's: One Survivor's Story, Part III: Full Diagnosis and Start of Treatment

Continued from Part II

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.

When we last left off, the pulmonologist came back with the diagnosis of Hodgkin's.  My parents put him to work to find an oncologist.  Later in what must have been the early afternoon, the oncologist came.  I was now going to go through a series of tests to see what stage it was in.  In other words, to what degree it was present in my body.  Knowing that would help determine treatment.  There are four stages, as with lots of cancers.  But these are the stages for Hodgkin’s:
• Stage I: One group of affected lymph nodes on one side of the diaphragm.
• Stage II: More than one groups of affected lymph nodes on one side of the diaphragm.
• Stage III: Groups of affected lymph nodes on both sides of the diaphragm
• Stage IV: Disease is not only in lymph nodes but can be found in other parts of the body such as organs, bones, etc.

The schedule was a abdomen and pelvis CAT scan, a bone scan, but the first of those tests was to be a bone marrow biopsy.  The bone marrow biopsy took place on that day.  This was done by poking holes right  above my gluteus maximus, going into the bone, an removing some bone marrow.  The area was numbed (supposedly), and I was told that there would be “a little pressure.”  Anyone who has gone under a medical procedure knows what that means: it is going to HURT.  And boy did it.   I don’t know whether the tech offered his hand to squeeze.  I know I had a pillow. And I certainly squeezed something.  Man, that hurt like a…Now the doctor doing the test did mention something about a relative who had Hodgkin’s and said she had three kids.  Sterilization was a possible late effect of treatment.  A late effect is something that happens in your body down the road as a result of the treatment.  Anyway the doctor, like the cardiologist, had one of those in-the-hallway-without-patient conversations with my folks.  Something about, “he has a long road ahead of him.”  Okay, so that didn’t sound fatal, but it sure sounded like I had something to endure.  I was still sore.  The nurse took off the bandages and pointed to my "headlights" or scars that were there.  That same nurse gave me a lotion rub-down on my back while I was watching TV.  Life can be OK, sometimes.

The next day I was woken up at about 6:00 and was drinking this icky stuff every hour or so.  This was known as contrast supposedly to help my abdominal highlights under the CT (or CAT) scan.  It's chalky and the best way that I can describe it is sweetened ice tea gone really, really, rancid.  But obviously there’s that payoff from that nasty stuff.  And I got the abdominal and pelvic CT scan.  Later on, a partner of my oncologist was going over the results with me:  the bone marrow was clear of any signs of Hodgkin’s.  The CT results were in and my abdomen and pelvis were also clear.  Now this was the first time I started to get good news.  For the past two weeks, the news had gotten progressively worse and now it seemed to be on the rebound.  At some point I complained about the contrast and the doctor said, “Yeah, they should lace that stuff with bourbon.”  He also said that I had a bone scan on Monday and he said he didn’t think they would find anything there, either.

Later that day, I started to receive visitors.  I had an aunt and cousin come over.  My uncle came over.  Two good friends my age.  A couple from church, the husband being one of the two that administered the blessing the previous week.  I think there were about 13 people in and around my hospital room.  It was like my uncle told me, that you don’t realize how many friends you have until something like this happens.  I was laughing at many points, which was hard because I was on oxygen and hardly able to breathe.  Eventually, the nurse put an end to the party.  But it was great to have people there.  Like I said before, when you’re stripped down to what’s important it is indeed the people in your life that matter.  And this is coming from a person who’s pretty  introverted.

The next day, Sunday, was a break from testing, but for the life of me I don’t remember what happened that day.  That’s probably because I was at a place where you really can’t do anything.  This was the time that the weekly patients came in.  These folks would get their injections Monday through Friday.  One, who was acquainted with my family and being treated for testicular cancer, came and talked to me.  He said, “You’re tough.  You’ll beat it.”  I didn’t know.  I never thought of myself as “tough.”  I still had the bag with my antibiotic for the pneumonia.  Because I'd lug that IV stand all around, I took to calling it my "pet tree."

The next day was the bone scan.  I believe that was my last night sweat, and they changed my sheets because they were so drenching it would be as if I wet my bed. That was becoming status quo.  I think I went back to sleep and once again, I was woken up.  This time – if I remember there was a little injection and I started to feel cold.  That was so my bones would be aglow, or something.  I went in for the bone scan.  This was a flat surface with another flat thing right above me.  I had probably only one or two feet at most between the upper thing and the lower thing.

canceragain.wordpress.com

Now, this could drive one batty because the test is so long and as you see above, there’s very little space.  For some reason I was playing inside my head side 1 of Rush’s Moving Pictures (LP's were still around, and I think most of my generation and before often thought about old albums in terms of sides).  I think I got to "play" the whole side in my head.  Anyway, the tech said it looked like a boring bone scan.  “Boring” for her meant “normal.”  And boring to me was good!

The expectation was that I’d start chemotherapy that evening.  I was given the run-down.  Among those was that I would have guaranteed hair loss.  The reason is chemotherapy drugs - also known as cytotoxic drugs - attack faster growing cells.  This includes cancer cells but also includes blood, hair, and skin cells.

My veins needed to be wide open for chemotherapy because of all that toxic stuff they’d be sending through the blood vessels.  So the nurses had to find a good vein other than the one I was using with my present IV.  Like many medical establishments and services, there was a “two stick” rule, meaning no nurse or tech could make more than two attempts sticking me without getting a good vein.  I went through two nurses and four sticks, and my veins wouldn’t give.  They brought in another nurse and she was going to get it from someplace else.  She asked for a razor blade.  My poor mother, having averaged about 1 hour tops of sleep at night, thought they were going to slit my wrists to get blood!  Actually, the nurse was going to shave part of my forearm so they could get a good stick.  It worked.  To this day, I am still a hard stick.  5 stick attempts is still the record.

At some point a very good friend of mine who I also worked with gave me a banner that was printed out at work.  This was back when you could print a long banner using a dot matrix printer.  It said “HEY DAVE, GET WELL SOON.”  And was signed by many people at work  It meant a lot.

So later on that day the oncologist went over all the test results around the evening, after I ate a sizable dinner. He went through my options of treatment.  He had said there would be about 3 months of chemotherapy with about a month of radiation, then that same pattern again  He gave me a “choice” between two chemotherapy treatments: MOPP, and ABVD.  The letters stand for the chemicals used so the body doesn’t build up a resistance to any one chemical.  MOPP was what he called the “gold standard.”  He did a good sell on the ABVD (Adriamycin, Bleomycin, Vinblastine, DTIC).  With ABVD, there was 50-50% of sterilization, less problems, etc.  With the 50-50, he advised me that I might want to donate to a sperm bank.  Well, we were a few hours away from treatment.  A little late for that now, isn't it?  Those that know me know which 50% showed up. He also advised me of possible heart problems, liver problems, and lung problems.  Today, ABVD is the “gold standard,” but it was considered new and pretty aggressive at the time.  But ABVD came to be on an option I was told because of my age.

Whatever it was, it was going to be rough.  He wanted to start that night.  I said is it going to be a problem that I just ate dinner.  He and I both looked at the plate and he said, “Just don’t go and eat a banana split.” My dad had gotten some literature on Hodgkin’s (again, pre-internet) and I, having looked through it a bit, asked what stage the disease was in.  He said IIB.  It was stage II because there were affected lymph nodes above my left collarbone, my left armpit, and that huge monstrous tumor on the left hand side of my body.  The letter "B" indicates symptoms of weight loss, fever, and night sweats.

I went with my family to the cafeteria.  I got my yummy hospital bedside cuisine, but my family understandably needed to eat. I was in a wheelchair, worn out, and sort of dreading the night ahead.  I could also remember a sight that still to this day brings tears to my eyes.  Two floors of the hospital were reserved for the children’s hospital.  In the cafeteria, I could see kids in their pajamas, many clutching dolls or stuffed animals, and I thought how unfair that those kids had to be there instead of playing like other kids do.  I thought they deserved happy carefree lives, like kids.

We started that evening with the chemotherapy.  The plan was to start at night so I would sleep though the whole thing.  I emphasize…that was the plan.  They injected me with a steroid, which made me squirmy.  I think they hit me with a sedative.  And I started that stuff into my veins.  There were four chemicals that went in.  The first three drugs went in via syringe.  The fourth, the DTIC, was on a slow drip.  It went OK for a couple of hours.  My Dad was sitting there in those ever-comfy hospital chairs (again, being facetious).  No nurse was around, and I said, “Dad, I’ve got to throw up.”  He sprang into action.  The nurses came in.  My dad says there was one that was pregnant, and was having a hard time dealing with it. The banner from work was posted up in front of me, and I remember looking up…then looking down.   I thought I had thrown up three times, but I think I was pretty sedated and my dad said six.  Months later, I read my doctor’s notes that reported I “tolerated it pretty well.”  How one tolerates the treatment, between professional and layperson, is of course relative.  But it would get worse.

I remember I woke up at 7:30.  I felt like…well, like I survived a battle.  The sunlit room was peaceful and quiet, as if the previous night never happened.  Then there was the I-Med machine, which regulated the drip of the DTIC.  That stuff is nasty, probably the most powerful drug in the chemo cocktail and burns as it goes in, so it is on a slow drip.  Later in my outpatient treatments, the nurse would put hot packs on my arm near the injection site. And I got nauseous just looking at this otherwise innocuous blue box with a handle.  And I would get nauseous at the sight of it for years to come.

novamedical.com

Yeah, like this one.

The pulmonologist pulled my oxygen.  I mean, he pulled the tube out of the intake from the wall.  I would leave.  I would go home.  The rest of my treatments would be outpatient, and thank goodness I wouldn’t get it again for another two weeks.  That would be the day after Christmas.  Now I had to live life like I've never had to live it before.

To be continued in Part IV: Chemo part 1

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