Friday, June 6th of 1980 may have been an ordinary day for most folks, but not me.
That was the day I found out that I had cancer.
To really start this story, I have to go back a few months in that year to the end of March. I was in a volleyball class for gym at Hunter College (I went to Hunter College High School in NYC from 1977 to 1983) when I noticed that the right side of my neck ached, like a stiff neck. For a while, that's what I thought it was but most stiff necks don't last for weeks, so something was wrong. I started missing days of school because my neck was in so much pain that I could not rotate my head left or right without difficulty.
I started to frequently visit the HIP clinic on 183rd and Broadway so that they could figure out what was going on. Test after test revealed nothing, and a month and a half had passed. Finally in mid-May I was going to be scheduled for a biopsy to finally determine what was going on. My stiff neck had started to swell to a point where if you looked at my neck sideways it was obvious that it was swollen. At this point it was clear that I was not going to finish the school year (9th grade) so I was excused from the remainder of my classes.
May 30th was the day I had my biopsy done. It was my first time in a hospital, and I was in the Einstein-Falk pavilion at Mt. Sinai Hospital, where Dr. Stanley Lane performed surgery outside of his main practice. I checked in the night before, and early that morning I was given an anesthetic to put me out for the surgery. I dropped off fast, but the weirdest part of it was after the surgery when I started to wake up. I panicked for a few seconds because I was in an oxygen tent in a hallway outside of the OR. A nurse walked by and apprised me of the situation, and once I knew what was going on, things were relatively OK.
The worst thing about that biopsy was the smell of my own blood soaking the bandage. Sickly sweet and in an enclosure made for a terrible experience until they took me out of the tent and returned me to my bed in the shared area I was placed in. I was in a twilight state all day as the anesthesia worked its way out of my system. I remember my mom being there, and four of my friends came by from high school, but the best I could do is respond with very weak hand gestures. They brought me a card that was signed by everyone in my 9th grade biology class - it was a green card that had only two words on it that could either be interpreted as a hope or a command:
Get Better.
The next day I was discharged after a bandage change and a chance to clean up.
The wait for the results had begun.
We received a phone call at home that we needed to meet with Dr. Michael Harris at Mt. Sinai to discuss the results. My mom received the call so I have no idea if there were any allusions to the diagnosis - I was just glad that I'd finally know what was wrong with me, and hopefully it would go away. That day we were to meet him was June 6th, 1980, a day that changed my 15-year old life forever. I went to school right up the block so I stopped by the school yard for a bit to see if anyone was around before I went down to the hospital. At this time I had no idea was the diagnosis was going to be.
As I met my mother and we checked in to see the doctor, I still had no idea what we were walking into. The doctor was very straight-forward when he delivered the results:
"Your son's mass was found to be malignant - he has non-Hodgkin's lymphoma. We need to start him on chemotherapy immediately."
My mother immediately started to cry, but I had a detached approach to the scenario. I knew it involved me and going through a two-year process (my doctor provided us with a Gantt chart showing all of the drugs and procedures that would happen over that time-frame), the end result being that I'd be cancer-free. I intellectualized the process so that it didn't (immediately) have an emotional effect on me - in fact, after the doctor was done explaining what needed to happen I told him I was going to meet a friend and head to a comic book shop we frequented. He did tell me one thing before I left that has stayed with me the rest of my life:
"I want to be invited to your wedding." (He was, BTW, 19 years later!)
In the days that followed my family had to prepare for me to undergo ten days of testing before my chemotherapy began, and this meant checking into the hospital again. There were many tests, from bone scans to enemas to kidney checks and more. If there was anything cool that happened during this stay (in the same location) was that the nurses liked me and helped me move into a private room! I remember two friends helping me move my bed to the private room and swapping it with the one that was in it. My doctor even asked me, "How do you rate your own room?!?" Another thing the nurses allowed me to do was get two "furloughs" - one to go to a comic book convention on a Sunday, and the other was to go see The Empire Strikes Back.
One of the nurses named Fay told me that I should envision cancer like something to be defeated, and she used a knight-versus-dragon story to illustrate what she meant. She had also told me that she had seen Empire, and one line from the movie resonated with her (and with me to this day) that was delivered by Yoda:
"Do, or do not. There is no try."
I was determined in my own way to simply live, cancer be damned. I did think back to a classmate from public school who died from leukemia in 1974, but I knew my situation was different than hers, so it didn't cloud my thoughts. Speaking of which, when you're alone in a hospital room, your thoughts can become your best friend or worst enemy. The culmination of all those emotions and thoughts happened one Wednesday afternoon when I had a score of visitors in my room. I don't remember if anything triggered it, but all of a sudden I broke down and started crying, saying out loud "Why me?!?" I know for my friends that had to be an awkward and strange moment, but I applaud them for staying and helping me through that moment.
After the tests were completed (I'm still in the 10-day testing stay), the doctors were ready to deliver my first dose of chemo. I was warned that there were side-effects and that it would make me sick to my stomach, but I told them "fire away." Well, that first dose hit within seconds and the contents of my stomach partially ended up on a nurse because I didn't make it to the sink in time! I know that was part of her job but I apologized to her and she understood. To give you a breakdown of what I would be getting, here's a list with the effects:
- Adriamycin - the most potent drug at the time, it caused my hair to fall out and my heart muscle to expand to 150% of its original size
- Cytoxan -this drug requires 6 hours of hydration before administration due to its effects on the kidneys
- Vincristine - probably the least toxic drug of the rotation; this is one I could have administered during lunch time and go right back to school
- 6-Mercaptopurine - in pill form, another drug that seemed to have no side-effects
- Prednisone - for those that don't know this is a weird drug used for many diseases; it causes fat cells to redistribute themselves in the body, and gives you a superhuman appetite
After observing the effects of the chemo for a few days, I was discharged and set to attend outpatient visits for my on-going chemo regimen. Going back to my hair loss - this was very traumatic at the time, since the bald look wasn't "chic." Your hair starts to come out in clumps, to the point where I said to my folks "Let me just get it all cut off." A quick trip to our local barber shop did the trick, and my blue terry cloth baseball cap became my best friend for that summer. Unfortunately, some people I knew in my neighborhood thought my situation was something to laugh at or make jokes about, and this really affected my already damaged self-esteem.
At this point I drew a VERY hard line about who I would consider a friend and whom I did not. I saw a very ugly side of people that I swore I would never emulate or condone, even if wasn't the recipient of scorn or ridicule, which I hold to this day. The other side of this is that some of my best friends to this day shone brightly during my time of duress - one of them came by EVERY day, and was the Best Man at my wedding. This is why I tell people that if I consider you a friend, unless you betray me, that is a bond we will have for life, and I am very serious about that.
Added to my chemo regimen was 10 days of radiation treatments (172 rads) to my cranial area. They had to mark my head with purple lines to properly align the delivery system, which made people look at me oddly until I explained it to them. One merchant asked me if the marks had any religious meaning - at least he had an intelligent question! These treatments really wiped me out and caused slight burns to my head which eventually cleared up.
One "glitch" that happened that summer occurred during a dose of Cytoxan being administered. There was a miscalculation of my body mass, and I was hydrated for 12 hours instead of 6. This meant that I wasn't given the drug until that evening instead of the afternoon, and my body was cold even though it was 90+ degrees out when I left. Not bad overall, and it never happened again - my doctor would actually let me see my charts from that point and validate his information!
For those that remember, the summer of 1980 in NYC was one of the hottest on record, and it was still a few months until the Grumman buses would make their appearance. What this meant was that sometimes I'd ride to the hospital and back on buses that were not air-conditioned on 100 degree days. The heat and chemo would do a job on me due to all of the side-effects which were:
- Altered sense of taste - tomato-based products tasted acidic, gravy tasted like oil and flour; it was like being able to taste individual ingredients
- Altered sense of smell - we all know NYC is a dirty place, but to be able to smell that day after day became nauseating
- Tear duct "malfunction" - I couldn't tear properly, so I had to use eye drops to provide additional moisture to my eyes
- Sweat gland malfunction - I couldn't sweat properly, and with a very hot summer, that meant I was only out 3 of the 10 weeks of summer; I had to draw cool baths to regulate my body temperature
- Low blood pressure - as I was administered more Adriamycin, my blood pressure began to drop, which meat my extremities weren't getting enough blood; I fainted twice in the bathroom, lucky not to hit my head on anything
Unfortunately, one of the side-effects did put me back in the hospital after the first week: low blood pressure. My BP fell to 90/60, so low that I had to fall into chairs and such due to not being able to support myself on my legs properly. Back in the hospital I went for a week or so - this time I didn't have the favor of being in the same pavilion as before. I was put in the Guggenheim wing - older, and although I had my own room, it had no bathroom, so I had to "walk" to the restroom down the hall, a problem when you couldn't walk well. Being woken up at 3 in the morning to conduct tests was no fun, and when your BP is that low, it's even hard to hold your head up when being wheeled around in a wheelchair. This was the first time I felt infirm - a feeling I hoped I'd never have to endure again.
Fortunately, after being discharged, my BP slowly started to rise and I was eventually able to go back to school, and sort of feel "normal", at least as much as I could. I wasn't in pain any more, but I was still sick, and couldn't do a lot of things I used to enjoy. Running was out of the question - I could barely walk normally, and stairs were a real challenge. I had to teach myself how to walk again, to get my gait back to where it was before.
As 1980 passed into 1981, chemo just started to become one of those things that was part of my life, and I incorporated it rather well, almost to the point where people around me were unaware. Bone marrow and spinal taps became the new bane of my existence - those things hurt, and they would always rub a nerve along my spine that would make my leg kick. Once, the doctor tried to tap my five times with no result, and I had to go back the next day so they could try again! There were times when I'd get sick and have to miss treatments - this would push the overall time-line out a few months, but there was no getting around that.
My sister contracted chicken pox in early 1981, and I had to get 3 ZIG shots to counteract it, or else I could die. Those are delivered intra-muscularly, and they hurt like nobody's business - I got one to each leg, and one to my right arm. When I left the hospital I was walking like Frankenstein!
One thing my doctor asked me to do in May of 1981 was talk to a patient at the hospital who had just started chemo and was feeling afraid and alone just as I was. I showed up and we had a great talk, and I think I made a difference in his life, as he did in mine. I was determined to become an advocate for cancer survival and thought one way to do so was in the career path I had decided on at the time - biochemistry. Life took a different turn for me in terms of careers, but I am always proud to tell people my story of survival and provide hope to those that may be going through what I did.
Summer of 1981 saw two changes - I was allowed to go visit relatives in Georgia after a ban on any travel, and I ditched the wig when I went there. My Adriamycin was discontinued in the summer of 1981 (you can only be on it for one year), so my hair was starting to grow back. To explain what really happens when you experience hair loss from chemo, it's not that you can't grow hair, but the blood vessels that supply your scalp with blood are compromised so the hair you grow is very fine and weak and falls out. My new hair came in like a baby's, and it took about two growths to finally have a full head of hair. This hair actually grows back with a better texture than before and is easier to manage, so I guess that's one "benefit" of chemo!
Did I mention that another "benefit" was that my body was so loaded with chemicals I didn't have acne problems?
1981 turned into 1982 - my last year of chemo, and my last dose occurred on Wednesday, August 11th, 1982 at 1 pm. A quick dose of Vincristine in my hand, and that was it! I "celebrated" by buying a video game cartridge and headed home to play it. A week later, two of my friends took me to see "Tron" and treated me to pizza and a trip to the Empire State Building!
As I look back on what I just wrote (for the first time anywhere) I know there are things I'm leaving out, and may intentionally be doing so for one reason or another. One major thing you can't really get a sense of is the loneliness I felt during this time, especially when I was alone with my thoughts. I also didn't have a girlfriend or anyone I could intimately share my feelings with, so I had to face much of this on my own. I am glad my family was around to provide support, but they didn't coddle me or give me favor because I was sick. That was very important in this formative time - I could have become a very different person if things had been different.
I mentioned friendship before, and there are those that I may not have mentioned by name, but they know who they are and know that they are important in my life. One friend in particular helped me one day when coming home from school I lost vision and couldn't see. He helped me walk all the way home, and I will always remember that as charity he provided at a time I really needed it. Other friends who just stopped by the hospital to see me or would just ask how I was doing really are part of the gestalt of experiences that have shaped me into the man I am today.
Having been married for almost ten years (yes, a POSITIVE anniversary this year!), my wife has been by my side despite some setbacks and another health issue (congestive heart failure in 2005, supposedly not resultant from my cancer), so to her I say:
Thank you, and I love you very much.
Writing this on June 6th, 2010, 30 years after first knowing, there have been long-ranging consequences of my disease and its cure:
- Chemotherapy is so toxic, and targets healthy cells along with cancerous ones, so it has caused chromosomal damage to my body
- Subsequently because I was 15 at the time and was in the midst of puberty, I was rendered sterile (a fact I was made clearly aware of in 2002)
- My short-term to long-term memory has suffered some damage, so although I can still remember things before this time like they were yesterday, that skill is not as sharp as it once was
- I have had my left parotid (salivary) gland removed in September 1983 because it had a small benign tumor on it; this delayed my college start by a quarter as the doctors wanted to observe me for a while
Thank you.
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