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

Hodgkin's: One Survivor's Story, Part IX: Epilogue

From Part VIII

To start from the beginning, click here for Part I

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 here's life since 2000, plus a spillage of thoughts.

Remember that one of the things that my oncologist at my hospital bedside that there was a 50-50 chance of sterility? This was a concern for my wife and me. So I got tested. When I called the doctor’s office, the tech there said that it was normal, and seemed annoyed that I bothered to call or that somehow I should have known the answer already. And I am happy to report that I have two beautiful, healthy children.

I've had trouble getting life insurance beyond the bare bones minimum under a group insurance policy.  Even though the health issues are behind me, I'm still not a good risk in the eyes of the insurance companies.  I get rejected for supplemental insurance offered by my employer. When I've gone outside my employer's life insurance plans, premiums go through the roof.  Health insurance is not a big deal when part of a group with the safety in numbers.

I did a little trauma work with the Hodgkin's.  The start of this series is something I started on my own accord back then, but I haven't finished until now.  What I started writing also contains a little more insights since then.    I went and joined a Hodgkin's survivor's online forum.  I had told them of my experience and then I was a 17 year survivor.  I was called an inspiration (I never think of myself as inspiring) but because I included the late effect of the fibrosarcoma, one member was a little concerned.  As I stayed on, there was a lot of issues that I had dealt with, but I haven't dealt with them for so long.  And some of the treatments were beyond my scope of familiarity.  And there were people that were dealing with problems that I never dealt with, like real sterility.  There was also someone who was told that Hodgkin's isn't a "real" cancer.  And of course, outrage rippled through the group.  I have my two cents:  You have cells that don't belong there, that multiply wantonly.  You have to treat them with chemo therapy or radiation (surgery, incidentally, is not used to treat Hodgkin's in the United States) or you will eventually die.  That sounds like cancer to me.  Hodgkin's is a lymphoma, a blood cancer.  It generally just has a better prognosis.

It was a very informed group.  I didn't for know example that a possible late effect of the bleomycin was Acute Respiratory Distress Syndrome.  So if you get pure oxygen or anesthesia, there's a chance your lungs could get inflamed to the point of it being fatal.  The group members were even discussing medical alert bracelets or necklaces.  But I have found out from my own research this risk to be very low. I've had three surgeries since chemotherapy, and I survived every one.  I will eventually have surgery on my right eye, so I might want to give that a mention.  There's no need to take chances.  And scuba diving may not be an option for me.  As for the group, the sword was very much over their heads.  It was kind of hard to relate to a lot of it.  But I suppose I might get back to that group again and see if I can contribute.

My most recent visit with an oncologist was in 2008, if I remember correctly. My primary care physician had just finished treatment for male breast cancer and I think was projecting his issues onto me. So he referred me to his oncologist. I stepped into that office, checked in, and sat down, thinking it’s really weird being in a place like this again. It was almost like some creepy homecoming.

I see him and he does the physical and checks my body parts out. Everything was clear. He said of both the Hodgkin’s and fibrosarcoma, “if they haven’t come back now they’re probably never going to come back.” His whole attitude was, “Why did you come in here?”

There also seems to be a problem whenever a chest x-ray is taken. There’s always this gas bubble that sets off alarm bells with anyone who views it. One time, I went into urgent care because I had a bad cold. They took a chest x-ray and the PA really erred, and I mean really erred, on the side of caution. Of course, I knew it was because of liability. They sent me to the emergency room. There, I was about to have my first chest CT scan in years.  I was dreading it on one hand but then some weird part of me said "let's rock 'n' roll."   Maybe that was because I'd get to prove what kind of CT pro I am or something.  But before that, the ER doctor talked to me about what they were seeing on the x-ray. The shape of my diaphragm was odd and the doctor said it was like a reverse hernia. I told her that when I was younger I had a huge mediastinal mass (that’s the medical terminology for that mambo tumor), and that it had displaced the diaphragm. That made sense to her. So I didn’t get the CT scan, but I did get antibiotics for my cold. Which was what I was after in the first place. It only took me 5 hours to get it.

I've also had skin cancers removed, and I blame the radiation for it because my cells are a little more sensitive now.  Once again: thank you, radiation.  Or I could use a less sarcastic, but more direct approach in the form of an expletive.  I think I'll be having radiation-caused problems for the rest of my life.  I watch that area.  So I guess there's where the sword hangs above my head.  But I don't live in dread over it.  I figure like the fibrosarcoma, I'll find whatever comes up.

I also may never be able to donate blood. Just about every time there was a blood drive at work, I tried to participate. I worked for a company what was a supplier for Red Cross Blood Services, and we’d host an annual blood drive. So there was peer pressure in giving blood.  But I got really used to needles, so opening a vein didn't bother me.  When I got screened, I was told I was on “indefinite deferral.” The woman who was screening me had lost her husband from non-Hodgkin’s lymphoma (what separates the two is that Hodgkin’s contains Reed-Sternberg cells, and the presence of those cells always clinches the diagnosis of Hodgkin's). I felt bad, like a survivor’s guilt and all I could say, like anybody else, was “I’m sorry.” But she said in the warmest, most sincere manner possible, “I’m so glad you’re here.” Wow.

I do think about many people who have died. First of all, my oncologist, Dr. John Bruner and his partner, Dr. David King, that I mentioned both died in 2005. Remember the gal that was an inspiration to me? She had died some time ago. She’s been gone for about fifteen years.  She had a lot more trouble with frequent recurrences, and I think she died from complications rather than the disease itself.

I think about well-known people, like Howard Carter. He discovered King Tutankhamen's tomb and died from Hodgkin’s in 1939. His death furthered the legend of the "curse of King Tut’s tomb." The one picture I can’t get out of my head is this:

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It’s from a medical textbook published in 1936. I think he’s just got his eyes shut. There are pictures out there of worse swelling. But it’s sad to see the little guy and know that he’s not ever going to grow into adulthood.  Even twenty years before I had Hodgkin's, the survival time with treatment was 10 years.

I can’t accept the view that some cell just decided to mutate and multiply. Although it's the scientifically accurate way of looking at it, I feel like I have to find meaning. Otherwise it’s just some crap that happened to me. My “freedom” from it has been described to me as a second chance. I do think that it is some sort of gift has been given. A way to see things. A way to live life.  This doesn’t make me special. It doesn’t make me necessarily enlightened. It’s just that I can see life in a different way. The problem is, I often choose not to. And you know what? Many times, I have thought of throwing this gift away. What a grateful recipient I am, huh? And that’s partly because the experience is so far behind me.  I also say that the people in your life are important, but as of now I'm choosing to isolate.  But I try to recapture the renewed perspective every day of my life, as hard as it might be for me to do.  I guess what I'm trying to say is that fitting this into this path that has been my life is a struggle in itself.

Hodgkin's: One Survivor's Story, Part VIII: A Sequel?

From Part VII

To start from the beginning, click here for Part I

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.

It was about September in 1997. For a few weeks my right armpit area would get sore after I’d work out with military presses or something like that which had me using my shoulders. One night after working out I was trying to massage my muscles on my right side to try and help the hurt a little. And then I felt it. This little raisin-sized lump right in my right armpit where a lymph node might be. Needless to say, I wasn’t happy one bit.

I played the denial game here, too. But that only lasted about three weeks. I was dreading going through treatment again, and the notion that Hodgkin’s would show itself again might mean that my long-term prognosis wouldn't be so great. Nevertheless, I knew this thing wasn’t going to go away until I saw someone. I made an appointment with my oncologist so he could check it out. I visited with him, he examined it, and wanted a biopsy to be done. So I’d have to arrange for a surgeon.

Now the previous benefit year, I had signed up under HMO because it was cheaper. I'd have to get the blessing on everything from a primary care physician.  That shouldn't be a problem.  I mean, what could happen, right?  But this would create a problem. First, we’d have to go to my primary care physician, who wasn’t there anymore. So they had to find another doctor to get me a referral to a chest surgeon. The HMO was going really slow and I had to do something that I hadn’t done before: hounding the oncologist’s office because they were the ones working on it. I didn’t like doing it, because I had a good relationship with them and was very grateful for all they had done. The whole process took A MONTH before I saw the surgeon. Needless to say, I didn't ever want to tie my doctor's hands again and forked over the extra money for the PPO during the next open enrollment period..

But that was a way off.  I went for consult and examination with the surgeon, and I think we scheduled the surgery.

So I report for surgery, and once again we’re having trouble with that heart rate thing. The anesthesiologist decided to go a little old school and knock me out with gas. So I’m wheeled into the operating room, perfectly alert. I then get this oxygen mask over me and I am told to breathe in and out. Then this numbness starts to take over my body and I hear one of the nurses say, “that was fast.” I wanted to say that it hadn’t fully kicked in, but I was out about a second later before I could panic.

One of the nurses woke me up as I was being wheeled into the recovery room. The doctor was with this entourage. He said that what they removed wasn’t a lymph node. This thing was blue and I don’t remember if he gave me the size. Great (facetiously), it was a tumor but not Hodgkin’s. Now the mystery again: What is it?

Several days later, I got a call from the doctor. He had received the pathologists’ report. I had a fibrosarcoma, which I had certainly recognized as cancer. Well, that sucked. We were going to make an appointment, go over the results, and determine what our next move is. I was at work. My boss called and I told her what happened. She asked if I wanted to go home for the rest of the day. As kind as that gesture was, I thought for that time it was best that I was at work.. My concern was not so much that I had cancer again, although that wasn't pleasing news.. My question was: What kind of treatment can I look forward to? I didn’t have those answers yet, and I wasn’t going to get those answers right now. I guess what I’m trying to say is that the information was incomplete, so "I have cancer" was just not enough for me to dwell on. But it was still a bummer.

My parents went with me to see the doctor. The doctor explained that the pathologists took a long time with this because they were trying to find cells that were dividing. This was a slow-growing tumor. I got a copy of the pathologists’ report. It had mentioned things like muscle atrophy (great, so working out wasn't all that productive) and the zinger: If this was in the radiation mantle field, it was "almost certainly" caused by the radiation. I often thought the radiation wasn’t necessary, but who am I? And as I said in the last post, it's now used less due to improved chemotherapy.  And I went under ABVD, which as I said is now "the gold standard," at least in the United States.  Curse you, radiation. So now we're going to get me back into surgery to remove the surrounding tissue to see if it had spread.

So now, it’s surgery day. I don’t get gassed but get conked out like everybody else usually does. The tissue sample would go back to the pathologists. My parents took me back to their house and just crashed, because that's what you do after general anesthesia - crash.

Some days later, I get a call from the surgeon. The surrounding tissue was free and clear. Whew! And he conferred with my oncologist who said that he didn’t see the need for any chemotherapy or radiation. My oncologist got me this far, so he must know what he was talking about. Again I was at work, so I decided to give my family the good news, My mom answered the phone, and at this time our benefits manager comes into my office. I announce to my mom that it was free and clear, and the benefits manager, overhearing this, had this cheery look on her face. Now, I never told the benefits manager anything about what was going on, so she must have heard it through some kind of grapevine. I really didn’t mind that she knew. The more people that know, the greater your support can be. And like I’ve kept saying, the people in your life are important.

But as for the big “C”, we can pack this one away.  But I would still some lingering effects from it all.

Hodgkin's: One Survivor's Story, Part VII: The Disappearing Shoreline.

From Part VI

To start from the beginning, click here for Part I

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 now the experience seems to be getting behind me. It’s like ship passengers who see the land slowly disappearing behind them.

My checkups went first from six weeks to three months to six months and to a year. At first there’d be CT scans, then just chest x-rays. I can remember being nervous during those more frequent office visits. I remember that in other parts of my life there was the thought, “this is not as bad as it gets.” When I went into the doctor’s office, I was confronted with the idea of how bad things can get. It’s a humbling experience, actually.

I'd have a lot of false alarms.  For some reason, many of these would occur right after the checkup.  Regardless of the timing, they included a few things. The main one was weight.  If I'd lose just a few pounds I'd start panicking.  Today I accept such a weight loss gracefully like so many others.  But at this period weight loss was still a cause of concern.  There was one time where I thought my lymph nodes were acting up again.  The doctor examines me and said that was "lumpy fat."  He also informed me that I "flunked lymph nodes 101."  So much for my intuition, at least for now.

On one of my follow-ups, I finally found out what remission means.  We hear it all the time, and we probably each have our own ideas as to the definition.  What my doctor said was remission means that they can't find any signs of the disease no matter what tests they run.  I asked him, "so far so good?"  He replied, "So far, excellent."

Rather harmless reminders of my then-recent past also occurred.  John was really instrumental in some of these.  Once, we were at a Suns game.  I went into a loud, lengthy but benign coughing fit.  John says, "Let's see, dry hacking cough...", as if he was starting to go through the symptoms.  It was nice that I got to a point where we could joke about it.

The specter of recurrence is known in many a survivors’ circle as the sword of Damocles. For those not familiar with this story related by Cicero, Damocles was a brown-noser in the court of the Syracuse King Dionysus II. Damocles was just kissing up to Dionysus about how good it must be to be the king. The king offered to switch places with Damocles so that he could feel what it was like to be king. So Damocles is sitting on the king’s throne enjoying himself until he looks up and finds a sword hanging by a single strand of horsehair.

And that’s what every cancer survivor I’ve ever encountered feels: that sword suspended precariously over you. But meanwhile life goes on. And it did. I went back to school, having to go through the process of re-admission. And I finally graduated in the fall of 1992. My brother graduated the previous summer, and I was having a hard time keeping things in perspective because my younger brother wasn’t supposed to graduate ahead of me. But it wasn’t like I kept flunking classes, changing majors, or doing anything else that would sabotage the process. I was out for a whole year for pretty good reasons. It seems like such a silly thing to be upset over, but I still was young and had that young person’s perspective of "right now."  Now I can say it didn’t make any difference when I graduated. The important things is that I made it to the point where I could graduate.

Time had been arranged with me regarding talking to some people who were just starting their way through Hodgkin’s. There was one young lady that I was talking to over the phone. She was not much younger than I and she was going through the tests. She just had her bone marrow biopsy (poor thing) where she was also told “a little pressure.” I wasn’t far removed from the whole experience, so I ended up relating many of the negative things about it. She said, “David, is there anything positive to come out of this.” I think I did say something positive, although I can’t remember what it was. But when we finished the conversation, she felt a lot better, and that came from knowing that she was not alone.

The second was a young man that had just started chemo. I can’t remember exactly what I said, but it was such a relief to him and his family. Maybe me just being there and being healthy helped.

Our family did three presentations: two in Georgia and one in Phoenix. It was entitled “Combating Cancer as a Family.” I would like to think we helped people. I could see in the audience as we were speaking that people were absorbing what was being said.

So like I said before, the visits went to one year, around December. I even made arrangements to come back and see my oncologist when I was living in New Jersey in 1996. But in 1997, I’d have to be seeing him a little early.


Part VIII: It’s back?

Hodgkin's: One Survivor's Story, Part VI: Another CT and Radiation

From Part V

To start from the beginning, click here for Part I

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 if I remember, I had a chest, abdomen, and pelvic CT scan. I had to pick up that oh-so-yummy contrast again. I heard suggestions to put it in juice or something. But why contaminate the beverage?

I’m at the CT scan, I remember being injected with the iodine. And the metallic taste hitting my mouth which triggered a nauseous feeling. And as I was going through the scan the tech saw what was going on and periodically she would ask, “are you all right?” I wasn’t, but I nodded because I just wanted to get through with it.

The CT scan results came in and the doctor said there was some residual scar tissue. I never knew if it was that the tumor up and died, part of it did, or what. But next, we were going to do radiation. Now this would be done by a radiation oncologist, and we happened to get referred to one closer to home. This would be a different ride. The experience for me was more of a physical pain, whereas chemotherapy was very much an emotional pain.

I was to carry my patient records to the doctor. I saw my original CT scan results for this first time. It would have really freaked me out if I had seen it at the beginning.  The tumor must have taken up about 1/3 of the left-hand side of my body. The dimensions the report gave were 17 centimeters long (or tall, since it was going the length of my body), 10 centimeters wide, and 6 centimeters deep. I don’t know how I was even breathing, or living. One of the first signs of this whole thing was the coughing. I now saw what was going on: that the trachea was displaced 3 cm to the right, and that was the cause. I knew it was pressing against my trachea, I just didn’t know how much.

The first time we saw the radiation oncologist, it was in consult. He was telling me among other things that: I’d be tired (like playing basketball for 4 hours, he said), that he’d get about 10% of my lungs, but that I’d barely notice it. I’d have hair missing in places. I’d also get tattoos.

I was to undergo mantle field radiation therapy, which involves an extended area of the body.  And it's not used much anymore due to improved chemotherapy, like ABVD.  But ABVD was a little known chemo treatment back then.  The first step was to get me set up so that they could set up this mantle field. They had to take x-rays and mark out spots where my lungs were so they wouldn’t hit them, or most of them. So the technicians were drawing all over my chest and neck. I also received tattoos, Now these were far from decorative and were just dots and like all tattoos hurt like hell when I got them. And no, you can’t connect them to make something interesting; however, they do seem to form the shape of Optimus Prime’s head. Errrr....Anyway, I went to work in the afternoon all “tagged.”


Radiation was to be for three weeks. So here’s what goes on in radiation, for those of you who have not been through this fun experience. For my case, I was hit from diaphragm to neck, and shoulder to shoulder. That’s a pretty wide field. I lay on this..tray and the tech puts these lead alloy lung-shaped blocks on a tray right below the radiation source. 

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It looked close to this.

The form of radiation is actually X-ray only in much powerful doses than we usually get at the doctor’s office or the hospital. The technician adjusts everything, including my head, which he tapes my chin back. This is actually a pretty normal procedure. It was done so my neck and chin could get hit. After adjusting everything, the tech would leave the room. Obviously that was so he could control the machine in safety. I was the one getting nuked, not him. So I’m alone with this machine. I’ve got my hands on my hips as instructed. Then a low hum comes, like a fluorescent light only slightly louder. It lasts for twenty seconds. How do I know? Because there’s not much to do in there, so I counted....1 one-thousand, 2 one-thousand, etc. Counting also took away the thoughts of what this thing was doing to my body. The tech comes in, flips the machine around so the circular end is now underneath. 

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A machine on its way around.

He puts the blocks on again and lines it all up, leaves, and I get zapped again on the back.

The tech’s name was Doug, and he was a nice guy. He was the one doing all the treating. He seemed perfectly happy to answer questions and really seemed to understand what the patients were going through.  At least for me that was the case, and that might have been because we were about the same age  Not too far into the treatment, he showed me those lung-shaped blocks. It was here that I learned they were made out of a lead alloy. The alloy had a low melting point, and so it could be put into coffee pots to melt it down. And these blocks were extremely heavy.

At the beginning of week 1, I because nauseous for the first two treatments.  I think that I was still associating treatment with nausea.  As the week went on, my throat started getting dry. Now I keep the company of smart-alecs, which is okay since I am a bit of a smart-alec myself. I complained at work that my throat was dry. My friend responded, “Well there’s a way to fix that. It’s called water.” I actually though water would do it, but it didn’t. By the weekend, the throat started to be sore.

On Saturday, I worked out and I was a little mad and discouraged because I couldn’t finish my regular workout. Later, we were going to celebrate my brother’s birthday. I complained about my throat and my aunt said at the restaurant, “looks like it's Martinis for you, dude.” They helped but only temporary.

Week 2. The doctor had said the radiation was frying away 500 calories a day. I was now down to many a kids’ dream - a diet of milkshakes. High in calories, easy to swallow. But it was getting worse and I complained about it to Doug. He explained to me that it was like I had a sunburned throat. As I was starting to entertain the idea of spraying Solarcaine down my throat, he recommended that I get something topical, like Aspergum. And that seemed to do the trick, but it was only temporary. By the end of the week, I could no longer taste my food. So: Can’t taste, can’t swallow. That took all the incentive out of eating. But the doctor said, “you need to eat.”

Week 3. I don’t remember so much of it. That was probably because I spent a lot of it sleeping. The doctor said I would be tired, and he wasn’t kidding. My daily schedule that week was get up, go to treatment, take a nap, go to work, then go to bed. I had to have found some time to eat.  My throat was miserable, and I the outside of my skin was starting to burn.  Although the exterior was more of a suntan and not a sunburn.  Looks at this point were very deceiving.  I suppose I squeezed in something to eat.

After radiation was finished, it took a while for some of the side effects to go away. The facial hair around the chin and neck was completely gone by the end of treatment. So I didn’t have to shave there, and I figure I’d probably develop pork chop side burns if I just let everything grow out.. But I didn't I’m just sorry there’s no photoshop for this scenario. I started shaving to try to jump start it. Regardless of whether it was effective, the facial hair returned in November.

For months afterward I’d have this really funny tingling sensation shooting down my sides. The doctor told me that was going to happen, and it ended about December.

The throat wouldn’t stay sore but it would stay dry. The doctor told me this during treatment. Today if you eat with me, you’ll notice I have a liquid in place before I start eating. I have to be able to wash the food down. Otherwise it kind of gets caught, not necessarily in my throat but also in my esophagus.

Now come the follow-ups.  We're not done with the story yet.

Hodgkin's: One Survivor's Story, Part V: Chemo, Part 2

Continued from Part IV

To start from the beginning, click here for Part I

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.

My parents had showed me a newspaper article (pre- internet) about a new drug called “Zofran.” I latched onto that drug name pretty quickly. It promised to be the anti-emetic to really eliminate those nasty side effects of getting sick. But I was skeptical. It wasn’t like I haven’t been given anti-emetics. How good could this stuff be?

I found out at about the sixth treatment. By this time, I wouldn’t make it home without getting sick, and the periods were getting longer and more miserable. My doctor was asking me about that, empathetically responding to be at how miserable it became. He then said, “Well today, we’re going to try something different.” I almost knew what he was going to say..He then told me about…Zofran. The nurses would get a saline solution going through my veins to open them up, just like they did with the chemo. Then they would put in the Zofran. Then those lovely chemicals that I fell in love with…not.

As soon as the stuff started flowing, I got that metallic taste in my mouth. Now my mind had conditioned my body to react to that by throwing up.  The chemo cocktail had not yet been injected. My doctor walks in and said in his usual dry humor, “boy I’m glad I didn’t test it on you or you would ruin my reputation.” That association with the metallic taste would not leave throughout my chemo treatments.

I went home without incident. I was sitting up and it seemed like a miracle. What wouldn’t escape me is this very hard-to-describe feeling of some sort of weird sickly stuff going through my body. I think it was telling me what was going on in my bloodstream. I can’t describe it any other way, but I felt it. That’s what other people never saw. But it just told my body all was not well. I will say that ability to “feel” what’s going through my body helps me sense if I’m dehydrated, so developing that sense certainly hasn’t been all bad.

That night, my Dad and I decided to play a little trick on my Mom. She went out on an errand, the first in many a chemo night she had been able to do. So we had it all set up like the times I was throwing up: a towel with an emesis basin on it. That was my reluctant friend.

homehealthdelivery.com

Then I lay sideways on the couch, as I had for all the previous times. My mother came home, and if I remember correctly, she was disappointed. But then I got up and of course she realized she'd been had. Later, my brother called I answered the phone and I said that I just had treatment. He was surprised because this just didn't happen.

Chemo – whether it includes vomiting or not, is not a pleasant thing to go through, although the emotions were amplified when I turned up getting sick. There was full anxiety come Tuesday before the treatment. Wednesday was the treatment, and I felt like total crap for the next couple of days.

A post-Zofran would include me taking 2 milligrams of Lorazepam to calm me down so I wouldn’t do the vomiting reaction. That often didn’t work with the reaction, but it pretty much mellowed me out. By the time I got home, I’d crash for an hour or two. And I remember waking up with that yucky bloodstream feeling.and being pretty depressed . The depression would last for days. Now, I've since been diagnosed with clinical depression. Going through this chemo thing could make many people depressed just by itself. I imagine the chemo probably spiraled the chronic part. You just wondered how long you had to take this. Is it going to get better?

At work, there was someone who was wearing this perfume that made me nauseous. If I could, I had to not sit next to her. But why that particular perfume? It turned out that the oncology nurse wore that perfume, and I had associated that smell with the chemo which in turn was associated with nausea and vomiting. My cousin had me smell her new perfume, and I immediately got nauseous. Well, we found the culprit.

theperfumemagazine.com

But this didn't last very long after treatment. So all is well with Yves Saint Laurent.

To this day and much to my surprise because all the other associations have long gone, I still get nauseous at the smell of latex bandages. I chalk it up to a “chemo flashback” and I’m sure every survivor has one and a bad association with some sensation that triggers it.

In March, we were able to squeeze in a trip to Georgia, visiting Jekyll Island and Atlanta. Atlanta was where the head of the baptist prayer ring was. He was a colleague of my mom. He had talked to me months before in Phoenix thinking my prognosis was worse than it really was. He is one of the nicest, warmest, and funniest people one can meet. I remember then I was wearing a pair of old jeans my brother gave me. It was waist size 29, and I was filling it out. I wouldn't be able to wear it much longer.

About April, I had pretty much gained all my weight back. I thought it was time to start working out again, lest that weight all go to flab. It would be a new beginning, and I’d start to get in shape. So I asked my doctor what he thought about exercise to get his blessing. Knowing his sense of humor, I should have known the answer by now: “Personally, I’m opposed to it.” So I reworded the question to ask his opinion “as a doctor.” He didn't have a problem with resuming exercise. So I go off and sign up. I looked at my photo ID that was taken then, and I looked at my picture, trying to figure out what was so different. I know there would be a difference in the hair, but something else was amiss. Oh, right - NO EYEBROWS. And the face was a little puffy, which is common for people going through chemotherapy. I really had a hard time with losing the eyebrows. I always thought they were one of my defining characteristics, at least superficially. But so was my hair,

Now as far as my hair was concerned, it wasn’t quite disappearing. What was happening, though, is that it was getting very, very thin. At one point during the treatment I was being weighed and my doctor pointed at me and said, “he still has his hair.” But it was such an ugly head of hair. Because each strand of hair was a different length, it looked like someone scooped up hair from the floor of a salon and glued pieces haphazardly onto my scalp. On the upside, I could wait until at least three months until my next haircut. And all I needed then was a trim. That would sort of equalize the haphazard strands of hair.

I remember I went out one night, and I remember saying to my friend John that I had two treatments left, and it looked like I was going to keep the hair. I think we did a toast to that.

At this point, I tried to re-take one of the classes again. When I had dropped out, I was taking advanced classes because I was almost done with school. Eventually, I decided just to retake them because it was really hard to jump in the middle and trying to remember everything else. Besides, it was hard to be in class when I had the yucky feeling.

Between the 11th and 12th - the last treatment - there was about a month because my white blood cells and bone marrow seemed to be taking a break. I was flunking the blood test every week I went in for three weeks. It was in this interim period that I started feeling my head and noticing there was some new hair sprouting up. My cousin who at the time was a stylist, spotted these little hairs, confirming my discovery. It was the fourth of July. I was scheduled for a treatment the next day. Funny how a another treatment was scheduled after a holiday.

By the end, there weren't too many good veins left as I had been a human pincushion.  So I think the hospital record of  five was tied during one of the last treatments.

So I went in the the 5th of July and my white blood cell count was the highest it ever was during chemo and my oncologist said that I really outdid myself that time. He also said, “I still never got your hair” and joked that I was ruining his reputation. I took the usual chemo, went home and crashed, and when I woke up, I went and ate a steak, very much aware that I wouldn’t have done that not so long before. My last treatment was done.

But I wasn’t out of the woods yet. Remember the doctor mentioning something about radiation way back? That was still going to happen. But before that happened, I’d have a CAT scan.

Continued in Part VI

Hodgkin's: One Survivor's Story, Part IV: Chemo, Part 1

From Part III

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 now I was out of the hospital and have to adjust to the new changes in life the best I could.

The next few days had extended family over a lot. I was exhausted. A hospital stay, pneumonia, and the treatment really did its trick. I also had no appetite, thanks to the chemo. I just didn’t feel like eating anything. The day after I got out of the hospital I had an eye exam so I could get new glasses to replace the cheap plastic frames I had. As about all of you know, an eye doc's chair is perfectly upright (unless it's tilted back to get a good look at your eyes), and I was fighting hard to stay up because I was so tired and weak. We went out to eat afterward, and I barely touched my meal.

And it when on like that for about three days. I finally did eat and got a new thing that I had never gotten before: a bad case of gas lodged in my upper abdomen. What happened was a combination of genetics (family history of hiatal hernias) and that the tumor had displaced my diaphragm Since then, medical people have been alarmed to see a gas bubble there on x-rays, not knowing the whole story.

For school, I had stopped three weeks short of finals. I got incompletes for all my classes except for one where my grade wasn’t going to change no matter what I did. I didn’t have work. So my life was on hold, at least for the mean time.

Relatives came and we went various places, but I got so tired that I’d just lay back down in my room. Other changes were taking place. I moved back home with my parents, clearing out my apartment. My old bedroom at my parent's house was re-decorated and some furniture was put in. I dreaded Christmas and the only reason for that was that the day afterward I was scheduled for another treatment.

Friends of my parents asked that they could do. My Dad just said "a note and a joke." I picked up some good jokes, actually. Many of them from people I didn't know.

I also had a lot of people praying for me. My name was in prayer groups everywhere it seemed. And there was at least one that I didn't know I was in ahead of time. It didn't matter to me what faith the prayers were in, as long as there was no human sacrifice involved. What it was to me was people's expression of well wishing in a way that was meaningful to them. That's what was important, and that meant a lot to me.

Almost instantly, I could feel that lump go down. In fact, the doctor asked the next visit as if expecting an affirmative answer, “is that going down.” So yes, now comes that next visit and scheduled chemo. I went in, got my blood sample taken. To my understanding platelets and white blood cells are looked at because they are collateral damage from the chemo. It’s important that the patient has a white blood cell count high enough to fight off infection. I had taken to shaving with an electric razor because they didn’t have blades that could cut and expose. I was gargling baking soda. Anyway, the “white counts” weren’t high enough. I wasn’t going to get the treatment. There was some sense of relief, even though I know that I had to get the treatment to get better. So I had to wait another week.

I also had a prepared list of some questions. One of them was that we were planning a trip to Utah, which would include skiing. The doctor gave me quite an admonishment even though I wasn’t going to skip out on treatment. My oncologist assumed I was and said adamantly, “you are NOT going to deviate from this treatment.” I haven’t been skiing since treatment, event though that wasn't the issue. Really, we were asking if the cold was going to be all right for me given the immune deficiency. But I was going to be no less susceptible than anyone else to ailments than anyone else in the Wasatch Mountains. We ended up not going because I had to come in the next week and that's when we were planning on going.

Still, my hair wasn’t completely gone, but I was still anticipating the hair loss. My friend and I were joking about how I should wear a wig with a natural hairstyle, except that it would be in some bright color. I chose purple.

The next week was the day after New Year’s. I had done the young person’s New Years’ over-imbibing.. My brother took me out to champagne brunch. Now, I was never clear on the verdict as to whether or not alcohol was a safe thing to do with chemotherapy. Obviously it’s not preferable, but I can report on that and other occasions that it did me no harm. So I had recovered by the next day when I was to get my first treatment on an outpatient basis. And once again, it was my oncologists’ partner, the one who suggested that bourbon be in the contrast solution. He said, with somewhat of an apologetic tone, that my counts were up and “you are getting it today.” So I took my medicine, literally speaking, and spent the rest of my day throwing up. That steroid was awful. I couldn’t stay still and I felt really “squirmy” as I put it, for days afterward.

My dad was trying to assure me that I wouldn’t be throwing up. When we got home, it didn’t take long for me to kneel before the proverbial porcelain god. That was probably the last time of all my treatments that I would throw up in the toilet first. I usually wouldn’t make it that far again. I looked up at my dad who was there in the bathroom with me. I felt after him saying that I wasn’t going to throw up that I had let him down.

I hadn't let him down. What was really happening is that my stomach was doing its job. As soon as the toxins hit the stomach lining, what does the stomach do? It tries to get rid of it. The chemo confused it.The human body is a wondrous piece of machinery even though it...uh...sometimes produces mutant cells. And unbeknownst to me, my brother and my dad went out to get sandwiches one night and my dad started crying saying, "it's not fair. He's trying so hard." So yes, I was not letting him down. It just hurt him to see me go through all this. As a parent, I certainly understand. Oh, well now I've spoiled it on the fertility part.

After a few weeks, I was going stir crazy. So I decided to go back to work.

My third treatment I won’t forget. I was lying on the couch yacking it up when the announcement came on the TV that the U.S. had just bombed Iraq. This was the beginning of Desert Storm, and I had teased my brother a couple of weeks back asking if he was ready to go over. This was when I was still in the hospital knowing if there was a draft, I’d have the “4-F” status in the bag. But the rest of the night wasn’t funny. It was miserable. There were two wars going on as far as I was concerned. I came out of the doctor’s office at about 4:30 and threw up at home. I didn’t stop until about 8:30.

There was another treatment where I was sick – like with a cold. I remember that the doctor ordered a lower dose so that perhaps my body could still get its act together and fight it. He also prescribed an antibiotic. The lower dose didn't help reduce the vomiting. But I ended up recovering from the cold pretty quickly.

I’ve written of the power of talking to someone else. My parents had invited someone that had her first bout of Hodgkin’s when she was 11. She got it again 7 years later. And then about every 2 years it would show up again. She was 29. And man, that was really the first time that I could see everything could get better. I had a chance. She inspired me. I remember being a rude host when my friend John came over (the same friend who gave me the banner in the hospital, joked about the wig, etc.) and we were going out. And I remember riding in his VW bus with him and looking southwestward at the winter sunset with a renewed sense of optimism.

But concrete cause for optimism came about a little later. Around this time, the doctor took a chest x-ray. It was extremely promising as it had shown the massive tumor reduced by about ¾. But as the doctor said, “we still have a long way to go.”

So we continue in Part V