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