Testicular Cancer - My Story (Originally written in November of 2000)
Fred Furia <fred@phillyzone.com>

Contents

What is this Page?
Finding Out - Falling from Heaven
Inguinal Orchiectomy minor surgery ro remove testicle
Retroperitoneal Lymph Node Dissection (RPLND) major surgery to remove lymph nodes
Chemo - First Cycle
Bowel Obstruction
Chemo - Second and Final Cycle
Recovering
Return to Work
First Scare
Second Scare
Physical Aftermath
          Fertility
          Swallowing
          Scars
Psychological Aftermath
          My Impression of Cancer
          Other People With Cancer
          Fear of Relapse
Why? (Physical)
Why? (Spiritual)

ADDENDUM (January 2002): Miracle Baby?!?!?


What is this page?
This web page tells my testicular cancer story from beginning to end. (HOPEFULLY to the end, at least. There is no telling what the future holds, of course.)

For a much briefer summary of events, including pictures and email messages about key moments of my illness, I have also created a brief timeline of events.



Finding Out (Falling from Heaven)
Friday, 8/27/99, I was extremely happy with life. I was a Philly guy who had fallen in love with a wonderful girl from Houston, and in April of 1999 had been offered a consulting assignment right there in Houston, with paid weekend fly-backs to Philadelphia. It was a perfect chance for us to deepen our relationship. As added bonuses, the work turned out to be JUST what I needed for my career, and I had somehow even found a local ice hockey team to play with throughout the summer. I was extremely lucky and I knew it. Maybe I was too lucky.

This particular weekend, I was planning to stay in Houston to spend time with my girlfriend. I watched all the other consultants - by now good friends of mine - walk out the door one by one to catch their flights home, wishing them each a good weekend. "See you on Monday," I said. Unfortunately, I did not see them on Monday. Many of them, I still haven't seen since that day.

That night, during a walk with Meredyth, I noticed a problem with my left testicle. I had already noticed that there was something strange going on, but I had mistaken it for a shrinking of the OTHER testicle, which had accidentally been struck a month or two earlier. But that night, the left testicle, in addition to being way too large, was becoming distinctly uncomfortable.

(Another symptom that someone more knowledgeable might have noticed is that my breasts had been enlarged and sensitive for a month or two. I had gained a few pounds during the summer, and I was thinking that maybe that was where I naturally gain the weight.)

When we got back to the apartment, Meredyth went into the shower.  While she was occupied, I took a good look at the testicle. It was completely obvious to me that there was a tumor. I couldn't believe I had overlooked it for so long. The testicle had a sort of a boomerang shape, and I could not tell which wing of the boomerang was the original testicle and which was the tumor. (That should give an idea of how large the tumor was.)

NOTE OF CAUTION: If a testicle looks different from what you expect, do not assume it was like that all along and that you probably just never noticed. Don't ignore it. It is better to see a doctor (preferably a urologist) than to just kind of wonder about it in the back of your mind.

I cried as soon as my girlfriend got out of the shower, because I was sure I knew what it was. I called home and asked my father (a cardiologist) if he had any other ideas, and he said that some other things could make the testicle or parts of it swell, but that I should get to an emergency room first thing in the morning.

Meredyth took me to Hermann Hospital the next morning, where I was examined by the attending physician. She also recognized my condition almost immediately, and gave me all the proper tests to confirm her suspicions (urine sample, ultra-sound, chest x-ray). The ultra-sound showed more than one tumor, and the doctor told me she suspected I had a type that "responds well to chemotherapy" (this meaning the non-seminoma germ cell tumor), and she turned out to be correct. I am still impressed that a young doctor would do so well in recognizing such a rare disease.

Anyway, the whole visit took 3 or 4 hours. Some time towards the end, it sunk in just a little bit what was happening to me. I turned to the doctor and said "Wait, I'm not going to make it to work this week, am I?" "Oh no." She shook her head gravely, obviously a little stunned by my naivete.

On the way to the car, I turned to Meredyth and finally broke down again. "The social worker visited me in there to see how I was dealing with my diagnosis," I said. I had scoffed at the notion that I would need any support, but the very fact that the social worker found my situation serious enough for that visit had started to affect me.

By now it was 1pm Saturday, and I had a lot of things to take care of. I had to go to the office, clean out my desk, and leave a bunch of email messages. Tell everyone why they would not see me on Monday, tell managers what the status of each task was and who could best take it over, etc. It was a horrible experience. I felt like there was a huge camera zooming out on the nice little life I had built in Houston. It was zooming out so quickly I could not even say goodbye in person, or spend a few days tying up loose ends. Oh well.

That night, Meredyth and I went for some Mexican food (something you can't find as much of up here in Philly), and the next day I flew home. The one part of this ordeal that was truly wonderful is that Meredyth got herself transferred to be with me in Philadelphia. We had only really been together for four months, and I will always be grateful that she chose to stand by me, and endure such a hardship with me.

Inguinal Orchiectomy
Monday, 8/30/99, I saw a top urologist at the University of Pennsylvania. I had told my father to find me someone strong, and by the time I got home, he had somehow set up an appointment.  (I didn't ask how he managed this during the weekend hours, but as I already said, he is a cardiologist, and he seems to know how to do things right in situations like that.) The urologist ran his own set of tests and confirmed my diagnosis, and scheduled my inguinal orchiectomy (testical removal) for that Wednesday 9/1/99.

The orchiectomy went fairly well, although I had enough discomfort (part from the pain, part from the drugs) to spend a night in the hospital. No big deal.  My mother actually went home for the night.  She has a habit of spending the night in a hospital chair if she thinks one of her children is in bad shape, so her willingness to relax a little is a good indication that I was in good shape.  (Besides, she found plenty of opportunities to watch me all night in hospitals later in my treatments.)

As a funny side-story... Hours after surgery, I remember calling my colleagues in Houston using my cell phone. They put me on speaker-phone as soon as I called, and a room full of consultants was asking me how I felt. I said I was fine, a little groggy, but that I wanted to know if the software builds were going okay. I remember they found my job dedication hysterical, laughing it up, and one friend told me adamantly that they were NOT going to let me worry about that. I also remember (funny now) being furious that they wouldn't tell me anything, because for some strange reason it seemed very important at the time. (Perhaps that's a life lesson.)

Retroperitoneal Lymph Node Dissection (RPLND)
My CT scan showed one dilated lymph node, and the suggested course was to get an RPLND, or Retroperitoneal Lymph Node Dissection. This surgery is much more serious than the orchiectomy, and was even called "brutal" in some of the information I found on the Web.  I learned that Europeans were sometimes choosing to monitor the situation instead of going right to this tougher surgery, and maybe I got a little excited about trying the European method, but eventually I realized that getting the surgery now was the smartest course for my situation.

The day before my RPLND, I remember I had friends in from out of town, hanging out with me and supporting me. I took them to the CVS pharmacy down the street, because I had some "bowel-clearing" instructions I had to follow. I didn't read the instructions too carefully until I was actually AT the pharmacy, and I remember my shock in the store when I saw the products I had to purchase. One was a basic liquid laxative. Okay, not so bad. But the next two were a suppository-administered laxative (Dulco-Lax), and an enema!

This was quite a blow. For some reason, it seemed even worse than the orchiectomy, which was pretty bad in its own right. I mean, I knew the RPLND was a much meaner procedure, but it seemed like there was always some additional insult I had to endure, and it always seemed to come before I expected it. (Before the orchiectomy, I remember planning a nice big dinner, and then finding an answering machine message telling me not to eat after 8pm. I got this message at 7:30, so I ended up having McDonalds cheeseburgers by myself, in the car, and feeling totally ripped off.)

So, again I felt I was being ripped off of a nice evening. It seems very small now that I think about the big picture, but there is an interesting psychological progression that I am trying to recapture it for this story.

ANYWAY...

On Wednesday, 9/29/99, my urologist performed my RPLND. I had been told I could ask for sutures instead of staples, so I did, and I ended up with a very thin incision line. One disadvantage of this (which I did not know until afterwards) is that the staples reduce the risk of infection over a tightly-sealed incision like the one I got. In my case, there was no infection, so it turned out okay.

My urologist was very experienced, and he had performed this surgery at least 80 to 100 times in the past. Even better, he understood how to do a "nerve sparing" version of the surgery, so that I would hopefully not have to suffer retrograde ejaculation. He told me that my chances of facing that side effect would be a little under 20%, but eventually I found I found things to be in good working order. I did not realize until later that I was lucky to find such a good doctor.  (Many do not know the nerve-sparing technique, and many who know the technique often fail to preserve the nerve anway.)

After abdominal surgery, it is common to need an NG tube (naso-gastro tube) to drain the stomach.  This is necessary because the digestive system goes into shock, and bile tends to build up there, which will make a patient extremely sick.  The tube goes in through a nostril, then down the throat and all the way into the stomach, and it can be uncomfortable to say the least.

After my surgery, I remember waking up as the recovery room staff inserted my NG tube into my nose and down my esophagus. Actually, as luck would have it, I remember being in a deep dream-sleep, and being wrenched halfway awake for an unknown reason. I vaguely heard someone say "Sh-t, I'll have to re-insert it," and then I felt something (a tube) being pulled out of my throat and nose. This immediately wrenched me fully awake, and then I experienced the re-insertion of a nose-tube insertion in all its glory. Only my good fortune let me experience it awake like that. Such a nice surprise.

This tube was in me for the next 5 or 6 days, and it was frankly the worst part of any of the surgeries I experienced. My abdominal pain level was very high, too. For some reason, the doctors did not seem to get my pain dosage correct for a day or two. For instance, to decide on my dosage level, they added increasing amounts of medication into my epidural until they found a level that kept me pain-free (and literally paralyzed from the waste down).  But, once they found this level, they left the machine set to go on injecting the minimal level of medication. I was forced to endure this low level until the pain specialists arrived the next morning and tuned the machine to give me the higher level of medication at a continuous rate. I was totally annoyed with this, but I survived just the same.

I also remember being terrified of getting out of the bed. The hospital employee was very stern with me, and at the time I hated him for it. I now see that he was crucial in keeping my recovery on track, but you aren't always thinking rationally when you have recently been cut from sternum to pelvis.

He got me on my feet, and helped me take a few steps towards the chair. He then let me sit down. After a moment, I said naively "Okay, I'd like to get back to the bed now." It was a dirty trick. He had no intention of letting me get back to bed for at least 30 minutes. (It reminded me of my swimming lessons as a little kid, when the girl would wave me to swim the 3 feet towards her, and then walk backwards while I desperately tried to get to her without drowning.) Okay, this guy's persistence was the key to my recovery, but I was in a bad mood, so I really should have been nicer to him.

(NOTE: Walking around and getting active is THE KEY to getting home after this surgery. The sooner you get active, the sooner your bowels will move, and the sooner you can get rid of the NG tube and GO HOME. If you aren't lucky enough to have a mean rehab guy helping you, be your own mean rehab guy!)

Eventually, the pain got much better, and the miserable NG tube was my only remaining problem, and even that was removed once I had a tiny bit of bowel activity. It was actually quite a surprise when the doctor walked in, woke me up, and pulled it out. I had almost given up on ever getting rid of it.

On Monday, October 4, I was taken home. My entire stay had been 6 days/5 nights, if I remember correctly.  Getting into the car for the ride home was very scary for me, as protective of my incision as I was being.  I vaguely remember yelling at my mom as she tried to drive me home.  I wanted her to go more slowly, but get me home faster.  I think I also blamed her for every pothole in Walnut Street, which was the only decent route back to our home.  Sorry, Mom.

Chemo - First Cycle

Monday, October 18, I began my chemotherapy treatment.

The standard plan for following up an RPLND in my case is two rounds of chemotherapy, with three main drugs involved:  cisplatin, etoposide, and bleomycin.  Each wave is 21 days, where cisplatin and etoposide are given only during days 1 through 5.  Bleomycin is given once per week (typically days 2, 9, and 16).  The discovery of this combination of drugs (especially cisplatin) during the 1970s is what changed testicular cancer from a cruel death sentence into a 90+% curable illness.  The treatments also included a large number of other drugs, designed to increase hydration to protect kidney function, prevent adverse allergic reactions, and decrease nausea.

With my chemotherapy, I now think I made a big mistake. The oncologist had told me I would be "pleasantly surprised" by the chemotherapy, and that I should be okay if I took Ativan and Zofran for nausea as needed. I was so impressed by his comment that I went a little too light on my anti-nausea medication, taking only the Ativan until it was too late. On the very first night of chemotherapy, I vomited, for the first of many times. By the time I went in for my third treatment, I was in such bad shape that they admitted me to the hospital for re-hydration via IV.

During all this time, for some reason, I had not even thought to take any Zofran. I guess I was partly afraid to try swallowing the pills once I had been throwing up. Ativan had the nice feature of dissolving for absorption under your tongue, in case you were too sick to swallow it, so I did gravitate towards that one. That just wasn't good enough, however, because I apparently have a very sensitive digestive system and needed much more even just to reduce the nausea. In any case, Zofran is the stronger stuff anyway.

Saturday 10/23, the day after my fifth chemo treatment, I was discharged from the hospital. My nausea had not really gone down, but apparently my insurance company had asked them to discharge me. (I didn't know this, and at the time I was happy just to finally get out of the hospital.) In the middle of that very night, I got so sick that I needed to be taken to the emergency room and readmitted. What a mess. I was discharged again three days later - this time without incident.

My hair began falling out early in week three of my first chemotherapy cycle. It took so long to happen that I was starting to think it would never fall out. It was the day I finally said to my girlfriend "I guess my hair just isn't falling out. I keep pulling on it and nothing comes out. Watch this...." And out came a puff of hair in my hand, leaving me rather dumbfounded. It was another day or two before it was falling out enough to become a nuisance.

I didn't really want to lose the hair, so I let it stay in until it was getting totally out of hand. Within a few days, I was trailing hair everywhere I went, and it was clearly time to get rid of it. After Meredyth went to sleep for the night, I decided to pull it all out. It was fun, but there was an extremely thin layer of baby-hair that would not pull out, and I eventually had to sheer it off with my electric razor.

This marked the beginning of the coldest winter of my life, by the way. Other people sometimes don't seem to mind it as much, but I found it extremely difficult to stay warm without my hair. I would wear a baseball cap indoors, and a wool hat outdoors, but I still remember being terribly cold. I think I just lose a lot of heat through my scalp.

Bowel Obstruction
Friday night, November 5, 1999 - I was enjoying the opportunity to watch my recreational hockey team, the Gators, play a game. As I mentioned before, I love playing ice hockey, and it was really hurting me to be out of action, but it was fun to watch my team as a fan instead of as a player. However, I started experiencing extreme discomfort while I watched the game.

I was getting sharp gas pains, low in my gut, off to one side. I kept on going into the men's room and trying to push out more gas or feces, but only a small amount of air would come out each time. Eventually, late in the game, I realized it was going to be a bad night, so I drove home. By the time I got home, I was in awful pain. The pain was so awful that I even tried some of the Dulco-Lax suppository laxative and an enima, which I still had left over from my bowel-clearing before the RPLND. Even that did not push out my blockage, and by around 11pm, I was on the way to the emergency room with my father.

In the emergency room, I was x-rayed and determined to have clumps of solid matter blocking my bowels - possibly held in place by a twisting or a kink in my intestines. Correction of this requires surgery, and I got it a few hours after arriving in the ER.

The surgeon re-opened my RPLND wound, saying I would heal faster that way. He said he would re-open only as much as necessary to find and correct the entire problem, and this turned out to be all but the top 1.5 inches. Of course it would be unfair to ask him for sutures instead of staples, considering he had come into the hospital at 1:30am just for my sake. So now, I am left with 1.5 inches of very nice sutured scar, and 8 or 9 inches of fatter, staple-marked incision. At the time, I felt a little upset that my nice scar was ruined, but as of writing this (10/25/00), the scar looks pretty good from top to bottom, so I am pretty happy with it anyway.

Anyway, I felt great the next day. My pain level was MUCH lower than after the RPLND. I did have a nose tube, but that did not seem to bother me much. This lasted a day or two, and then turned very bad for me.

I always hated the original NG tube. It had been a continuing source of discomfort. But this second tube started to really become a problem for me. It was as if my throat had worn away, like a foot that gets a blister from wearing a bad shoe way too long. My throat got to be so sensitive that I couldn't think of anything else, and I was totally over-dosing on the throat-numbing sprays I had gotten prescribed.

At some point, my oncologist noticed that I had an oral thrush infection growing in the back of my throat. Thrush, I have now learned, is a fungus that naturally occurs in the mouth, and is normally held under control by the immune system. This can go wrong when the immune system gets weak - presumably weakened by chemotherapy, in my case. I was given antibiotics to fight the thrush, and eventually it subsided.

Eventually, also, my bowels began to resume normal functions, and the NG tube was removed. This was one of my happiest moments of my treatment. The discomfort had become SO annoying. Man, I hate those things!

The bad news during all of this was that my second cycle of chemotherapy was now 9 days late. I knew from the start that this was a bad thing, because my oncologist had stressed that starting the cycles exactly 21 days apart is of great importance for the treatment. Just after the emergency surgery, I had asked my oncologist what we could do, and for the first time in my treatment, he actually seemed a little uncertain.

I am lucky enough to have a very experienced and competent oncologist, who had seen a good number of TC cases. I also feel lucky that he was modest enough to call for help when necessary. I recall that he put in a call to Indiana University, and got a confirmation that my second cycle should be delayed until I recovered sufficiently to survive it. (I am not sure whom he consulted on this. At the time I had never heard of IU as a source of expertise for testicular cancer, though I have certainly learned about them in the meantime.)

Chemo - Second and Final Cycle
Wednesday, November 16, 1999, I finally began my second cycle of chemotherapy.

By this time I had not been outside the hospital for 9 straight days, and the end was not in sight. My chemotherapy began Wednesday morning, and that very evening I had 3 or 4 vomiting episodes already. I was miserable, and expecting to be miserable for the indefinite future. By some miracle, though, I was able to get myself back under control. I got very aggressive about my anti-nausea medications (Kytril and Ativan), insisting on getting doses as soon as the hospital staff could be talked into administering them. Under my constant pressure, I even got the oncologist to reduce my dosage periods from 4 hours to 3, and this also helped tremendously. As of Sunday (my last day of cisplatin and etoposide), I had still not vomited again.

On Monday, November 22, the hospital discharged me. I was so excited that I was willing to overlook the remaining nausea, and I didn't know that the discharge was orchestrated (again) more by my insurance company than by my condition. I lasted about 20 hours out of the hospital, before having to return, defeated by nausea and dehydration. Times like this were about as psychologically destructive as you can imagine. But at least this was the last foreseeable, imaginable stay in the hospital during my treatment. The surprise bowel obstruction had really taught me not to be TOO optimistic, but I knew that freedom was near.

Finally. FINALLY. Monday, November 29, 1999, I went home. Typing about this day has me near tears of joy, even 11 months later. This was it - the end of my trials and the beginning of my road back to normalcy. There was one more dose of bleomycin to receive, but the bleo never seemed to affect me like the other two medications.

This time, I had taken measures to make sure of my success. I had switched myself to oral medications for my nausea while still in the hospital, to prove to myself that the switch would be possible, BEFORE making the experiment at home. I feel that this is a very important step, and I would insist on doing it if I ever find myself back for more chemotherapy. (Knock on wood!)

As before, my blood counts had plummeted during my last day or two in the hospital (especially my white blood cells), and I needed neupogen and epogen injections to bring them back up. Both counts responded well, and it became a non-issue after 3 or 4 days.

Recovering
Although I was able to function at home, I was still in nasty shape. With all my complications, I had gone from 170 pounds at diagnosis, to as low as 130 pounds during treatment. I also had a continuing issue of nausea (without vomiting), and the general feeling that my head wasn't clear. Most foods - including ones that I normally loved, like Coca Cola - tasted terrible to me.

In fact, I had a terrible time taking in just about any fluids. For a few days, water made me gag, as did my own saliva! Eventually, I found I could drink milk and hot cocoa in order to prevent dehydration, and after a week or two, the extreme difficulty with normal water began to go away.

I found that soup was okay. Soon I could also eat pasta with alfredo sauce, which I consumed as heavily as possible to quickly regain my weight. Gradually, my taste for other foods came back, but Coke continued to taste like metal until I was almost wondering if I would ever like it again. (It took more than another month to start tasting good again!)

Monday, December 14, I returned to work (described below).  Getting out of the hospital was very uplifting, but even at home, during my sick leave, I had felt deprived of my humanity in some way.  I felt like I was a ghost, haunting my house, having little or no impact on the outside world.  That is not my style at all, and even though it was much better to be home than in the hospital, it still bothered me until I got back to work.

Sunday, January 17, 1999, I made my return to ice hockey. I was still bald, and about 20 pounds underweight, but the doctors said my bowel surgery was the only inhibiting factor, and the necessary healing time for that was well past. This represented one last part of my life that I stubbornly wanted to take back, and it was a great feeling to finally get there.

My hair started coming back later in that month, but it was an extremely slow process that seemed to go on into February and March. Even after that, it took a few more months to get beyond a fuzzy crew-cut style of hair. As the baldness went away, however, I also felt kind of like the protection of chemo was receding with it. If my hair cells could grow again, I wondered what other cells might start growing. But this was almost a subconscious thought. I couldn't help being happy to leave it all behind me.

Return to Work

I returned to work on Monday, December 14, and I think this email message sent out the very next day (to my "support group" of family and friends) is a good look at how I was just about back on my feet, but soundly shaken:

For those of you who don't know, I returned to work on Monday (yesterday). I felt a little sick sometimes, and tired as well, but it's good enough. I am back again today, for instance.

The chemotherapy turns out to have caused some temporary kidney damage (very common for these drugs), and as a result I have to take a lot of potassium and magnesium supplement pills. They are very large and hard to swallow -- but who really cares (I'm out of the hospital, remember?). This should last about a month or so.

I am also still bald as an egg. I have no idea when I'll get some hair again -- maybe early next year. But like I said, who really cares.

As far as the weight-watch goes, I believe I have gained about 6 pounds since the last email I sent out (11/29). That leaves about 24 pounds before I get up to normal. Not a problem, as my appetite is now huge. I am wolfing down pasta (with thick alfredo sauce), pizza and other fattening foods with no problems whatsoever. I am even drinking water a lot more than before.

I will have lots of medical tests over the next year, but as far as treatments it looks like I am completely finished. The chances of recurrence is very low after the type of regimen I have had, so I expect no further problems. (Let's hope.)

Otherwise, things are back to normal. I have yet to buy a Christmas present, for instance.

Thanks one last time for all of your support. I'm sure I'll run into most of you soon anyway, to thank you in person. As I count it (diagnosis through return to work), it's been 107 days of fighting for my life (imagine leaving your normal life for 107 days -- that is a long time), and you've all been a great support group throughout that time. I really appreciate it.



First Scare
In the spring and summer, things just got better and better. Once I was able to play hockey again, I was also able to do a LOT of things to get myself back into shape. I was determined to do just that, and I did. My girlfriend Meredyth's outstanding habits of walking and visiting the gym rubbed off on me, and of course there is my ice hockey as well.

So, things were almost all forgotten by the time I noticed that I was having a little trouble swallowing. I could not recall exactly when it started, but it seemed like I was very often having episodes of "drinking wrong". That is, if I am even the least bit distracted while drinking water or some other fluid, some of it manages to slip down my windpipe and choke me a tiny bit. This happens to everyone once in a blue moon, especially if they are trying to have a conversation while throwing back a drink of some kind, but it went from an occasional thing (once or twice a year) to becoming a daily part of my life.

At my next oncologist appointment, I thought to mention it just before leaving for home. The oncologist told me that swallowing difficulties sometimes arise from tumors in the mediastinal area (just behind the sternum, or chest bone), because a nerve used for swallowing goes down into this area and then back up.

He told me not to worry, and pushed up my next CT scan to the following Monday (7 days off). He gave me his home phone number, and said I could call him Tuesday for my results. SO...

His advice about not worrying lasted me a day or two, and then I suddenly realized what was happening. If there was no reason to worry, then why push my CT scan up by a month? How else could my swallowing be getting funny on me? There was no other explanation I could find, and the one about tumor activity was a perfect match. I called my sister (in med school, with lots of access to research information), and all she could say after some research was that swallowing problems are "not good."

I tried to be strong. I didn't tell anyone for a few days. Tuesday or Wednesday I mentioned it to a co-worker friend, because it was starting to consume me. I did NOT tell Meredyth, because she had already been through so much (worse than myself, I sometimes think). And I also didn't want to burden her with something, when there seemed to be no point at all until I knew for sure. (Why get her hysterical for a whole week, when there was nothing she could do about it anyway.) Keeping silent like that was extremely difficult, but I wanted to hold out.

At work, on Thursday, I was suddenly called and told they wanted to send me to a project in Charlotte, NC. No way! I finally had to open up and tell some more people about it. I said to the manager involved: "This is the problem. I had a bout of testicular cancer last year, and recently I have been experiencing some suspicious symptoms. And now I am going to have to go through tests, and find out if I am getting into hot water again." Of course he decided to find someone else for that assignment, and told me to just let him know if I needed anything.

Maybe it was having to acknowledge the possibility, and maybe it was the severity of his reaction, but at that point something made me crack under the pressure. So far, I had only dumped my story on one person, but I needed to share it some more. I called my brother and told him what was going on, and of course I started crying a little. After talking with him for a while, I got off the phone, and paced around the unoccupied office I was using for these phone calls. I locked the door shut, sat down, and banged my fist on the desk a few times with tears running down my face.

Please understand, I am a fairly tough-skinned guy - very stable emotionally. This was my only breakdown in what I now consider the most agonizing (emotionally) week of my life. It was too much - wondering what was to come, terrified of more cancer (or more treatment, for that matter), feeling guilty over hiding it from my girlfriend (when telling her would make me feel even MORE guilty for not being strong). I had come so far. And I was so strong physically - possibly stronger than ever since I was an NCAA swimmer at Princeton University. I had worked my ass off to get back to that level, and now I was seeing how easily I could be stripped of it again. It was like there was an unseen enemy that I wanted to fight with my fists, but there was no way to get at it. No way to see it, for that matter. I felt frustrated, afraid, and totally doomed.

Saturday, I had to stop at my parents' house to borrow a tool for Meredyth to use in some yard-work she wanted to do. I assumed my brother had talked to them, but he had not. My dad greeted me eagerly (innocently happy to see me), and I mistook the attention. "So Dann told you what's going on, right?"

That, of course, forced out the whole story. I will never forget how my mother's eyes changed when she heard that I was having bad symptoms and needed a scan that Monday. She didn't cry, but her eyes turned very red, very quickly. It was like every blood vessel in her eyes suddenly exploded.

By Sunday night, I had decided to tell Meredyth the situation. I knew she wouldn't be angry over the week of silence, but I would have never felt right if I had to come home the next day and tell her I was recurring, and that I had suspected it for a week without telling her about it. She got really upset when I told her. (We both did, actually.) But she stayed more optimistic than I was.

She has always been a tad more emotional than I am, and this was a great example of why her way is better. My logical mind-set was telling me I was in a really bad situation, while she remained determined that things would, at least COULD, turn out okay. So, Meredyth stayed fairly optimistic, while Mr. Logical was a nervous wreck. Thank God she was right.

The next day I got my scan. I had to wait just 3 hours at home, for my father (a cardiologist, remember), to hunt down the radiologist and get my results. It was still agonizing. I remember shaking in fear at one point. My brother showed up to support me. But the results came in; I was all clear. I started crying, and all I could think of was that I had to call Meredyth at work with the news.

So the scare was over.

Only hours later, my sister (the one in med school) called. She had just run into a doctor that she respects a great deal, and she asked if he could think of what might make a patient have my kind of swallowing difficulties. She did not mention my testicular cancer, and he immediately asked if I had been intubated recently. As a matter of fact, I had. I have had general anesthesia (which means a breathing tube) for three surgeries, plus two NG tubes. As far as I know, one NG tube was a problem and had to be re-inserted (described above, after my RPLND), and one tube (not sure if it was NG or breathing) was inserted only after difficulties during my bowel correction surgery.

So, now there is a good suspect for this swallowing scare. I have had a swallowing study - a moving x-ray of my throat and esophagus, taken while I swallow foods of different consistencies. (All foods mixed with barium, of course.) The study proved normal, because my problem occurs only when I am genuinely not paying attention while swallowing. I have been advised to follow up with an ear, nose and throat doctor to investigate the issue further, and I will be doing so in the near future, but I am already fairly content with the explanation.

The Second Scare
This scare was not as bad. I had learned that not everything is a tumor, even if I can't think of another explanation.

On Saturday, October 14, 2000, I noticed a small lump on my remaining testicle. I knew it might be my epididymis, but for some reason I couldn't remember that structure being exactly like it seemed this day. So I decided I would push my way into my oncologist's office Monday morning, and ask him to take a look.

Again, I did not want to upset Meredyth. I was fairly confident things would be okay, and I certainly didn't want to drag her through another panic attack of mine, so I simply didn't leave the house for work that Monday morning. Instead, after Meredyth left, I called the oncologist's office and asked if I could come in.

The oncologist checked my testicle and said it seemed fine, and that the lump was probably my epididymis. He said he would send me for an ultrasound, just to be on the safe side, but that alone calmed me down mostly.

Later in the day, I got an ultrasound, and no tumors were found. This was extremely good news, BUT, I got some other news as well.

The radiologist noticed some calcifications on my remaining testicle. This is generally not a great sign, and is sometimes associated with malignancies to come. I am now in the process of getting my urologist to look at this latest ultrasound film, and compare it to the one he got of me last September. Apparently, the risk of malignancy is greater if the calcifications are increasing in number or size, but in either case we will probably monitor that testicle closely from here on in.

Technically, calcifications would now be my "third" scare, but the stories tie together somewhat tightly, and I can't really compare it to the other two scares. It's more of a mild nervousness, during which I can easily enjoy my life.

Physical Aftermath
My physical condition today is already better than before my ordeal happened. As I have said, I am in excellent shape. I can do a ton of sit-ups, my hockey legs are as strong as ever, and lifting has toned my muscles nicely.

There are a few things that are different, though, and I will try to describe them, large and small.

Veins
I did not mention the side-effects of my ongoing connection to intravenous tubes, because this was generally spread throughout my entire treatment. I was in the hospital for at least 20 days during my treatments, and I always had at least one IV tube in me. These tubes had to be changed at least once every three days, and very often, my veins would collapse before the three-day period was up - sometimes never to recover.

There were some IV fluids that would really burn my skin. The intravenous version of Ativan was, I believe, a notorious vein-burner. If a careless nurse was to inject it too quickly, it would put me into agony for a few minutes, and this was harmful to my veins in the long run as well. (It seemed inevitable that any vein burned like this would not last its three days. I now wish I had insisted on getting those veins relieved of duty sooner, but at the time I had too much to think about, and I ended up losing them permanently in many cases.)

The other notorious vein-killers were the nutrient bags. After my bowel surgery, I was in really bad shape. I was very light from my troubles during chemotherapy, and I was then suddenly recovering from bowel surgery with an NG tube - which of course makes eating quite impossible. After a few foodless days, the hospital decided I should get their 1800-calory nutrient bag once per day. This was important for my nourishment, but man does that fluid destroy veins! If you are ever being nourished by the white, milky IV food bags, make sure you watch your veins carefully, and get the IV changed as soon as you feel discomfort.

Better yet, if you are going to go through all of this, maybe you should get a port. A port is a longer-lasting IV access device that can be poked into you. It is not as likely to ruin a blood vessel, and it can be used to draw blood as well as to administer IV fluids. Ports last for up to two weeks before needing a change, so the number of pokes that you will be spared in the long run is tremendous. Just think - in a typical hospital stay, you will get blood drawn once every day via a syringe, and get a new IV needle every three days (at best). It's worth considering.


Fertility
First and foremost: fertility. As I was starting to get better from chemotherapy, my oncologist let me know that the sperm sample I had banked before my RPLND had a prohibitively low sperm count. From his experience, this means that I will probably be unable to ever have children, but he has strongly advised me to visit the sperm bank again, and then see a fertility specialist. If it is confirmed that I am infertile, there may be a few methods they can try for me, but I am told that things generally do not work out in a case like mine.

This was quite a blow in itself, because I have always loved kids. I am a Big Brother, mentoring a little buddy from South Philadelphia, and I am by far the oldest person who runs around with the kids at family get-togethers, rather than sitting quietly and making conversations with the grown-ups. I wanted to have a lot of kids, and I kind of thought that, health permitting, I had some nice genes to pass on. Smart, athletic, likeable. You know, all those conceited things we all think about ourselves! But, if it comes to that, Meredyth and I will find another way to have children. Life goes on.

The other issues are small, but worth writing about, in case they affect someone else out there.


Swallowing
I have already mentioned my small swallowing issue. It happens at least once a day - most often while drinking from fountains or soda cans - but it is really not a big deal. The only real part about this problem that I resent is the huge scare it caused me in September. That was terrible, but the physical aspect is not bad at all. I can live with this one forever.

Scars
Basically, I have two scars. One is from the orchiectomy, and it is all but gone today (13 months after surgery). I can't remember the last time I looked at it at all, but I just took a peek right now, and I can barely find a shadow that might be the scar. Even if it had stayed around, it is low enough in the pelvic region that even a Speedo bathing suit would hide it, not to mention the hair I have in the region.

The RPLND/bowel surgery scar is not as subtle. It runs from pelvic bone to sternum, turning into a little semi-circle to avoid the navel. I still consider it quite acceptable, but I admit that I won't be a bathing-suit model any time soon. Remember, this incision was opened a second time to repair my bowel obstruction, so it is probably worse than most.

One thing that does bother me a little bit is that I now have a small bulge of fat to the right of my navel. This appeared after my bowel surgery, which was performed at a late hour under urgent conditions, and I believe I might have been stapled up somewhat quickly. It looks like the skin on the right side of my incision was pulled together more tightly than skin on the left side, and this tightness caused it to fold a bit, trapping the fat-bulge where it is.

I have always been a thin guy, and I have a pretty muscular stomach that starts to look like a nice washboard if I start doing sit-ups regularly. That effect doesn't work as well with a 2x2 inch lump of flesh that sticks out about a centimeter. So, maybe that's a valuable lesson in vanity for me. (NOTE: I did worry that this thing was a hernia or something, but the doctors assure me that it is just some fat. If you have a similar thing happen, make sure you don't dismiss it until a doctor looks at it for you.)



Psychological Aftermath

My Impression of Cancer
Obviously, this has all been a traumatic experience for me. I feel a profound bond of sympathy for anyone else who has gone through testicular cancer, but the experience has also opened my eyes to victims of other forms of cancer. I am not under the delusion that testicular cancer (especially in my case) is the most awful version one can get. In fact, it seems to be the best cancer to get (if there can be such a thing).

I now feel very strongly about cancer in general. I am ashamed that I had never given to the American Cancer Society or any other cancer-related charity in the past, and I am committed to doing so from here on in. At first, I considered targeting my donations for testicular cancer, but I don't generally do that. I think that research is best aimed at deadlier versions of cancer, while the best way to fight TC itself is to publicize it. If TC is caught early enough, lives can usually be saved. I would love to see a day when all forms of cancer can be treated with a 95% success rate.

Until I found out that I had cancer, I had always thought of cancer patients as a whole other group of people. I was not a member of that group, and I could not relate. I once did a charity benefit for children who have leukemia (remember, I love kids), but I still didn't consciously think of cancer as something that could affect me. I never thought to myself "Wow, I could just as easily have been one of those kids," or "Cancer is something everyone needs to worry about." It just didn't occur to me that I could or would have cancer someday. I just couldn't conceive of it.

Knowing that my family on both sides had a history of cancer, I did consider the disease as a way I might die someday, but I was expecting that to happen in my 60s or 70s - not at the age of 28!

It didn't help that I was always one of the most athletic people I knew. I grew up as a very good swimmer. I was not Olympic-caliber, but I was locally well known as a top-notch swimmer. Since college, I have picked up other sports and done very well in them, including softball and hockey. I have always been able to outrun anyone except formally trained runners, and out-wrestle anyone but formally trained wrestlers. I guess all that convinced me that I was just not going to get a disease like cancer, because I was in great shape and healthy as a horse.

It was time to wake up. Sometimes, none of that stuff matters. Staying in shape and maintaining a good diet can reduce your odds of getting cancer, but you could do everything right your entire life and still get it.

Other People with Cancer
My girlfriend said it best, a few months after my treatment. She heard that a co-worker had survived cancer a few years before, and she told me that she was surprised at how differently she looked at him. There was immediately a huge, deep respect for him and his accomplishment.

It has a similar effect on me. I feel a strong bond with anyone who has faced or is facing cancer. Even if I had respected the disease before my own episode, I could never have truly understood it without going through it. It's this sympathy, I think, that affects me so strongly.

Fear of Relapse
As you can tell from the way my first scare affected me, I will always be afraid of a relapse. I can accept what has happened to me, partly because I know that so many others have dealt with so much worse. But from here on in, I'd like to stay safely in the middle of the statistics.

I don't really believe that I will have a relapse, but again, I will always be looking over my shoulder - especially with the calcifications issue.

I also understand that the chemotherapy drugs bring with them a small risk of leukemia in the future - maybe 20 years down the road or so. I will keep on the lookout for that problem when the time comes, but I would again like to hide safely behind the law of averages. Hopefully I will not be that one-in-two-hundred guy who gets it.

Why? (Physical)
Okay, here's a big one. Why did this happen?

There are two kinds of "why" that I can think of. One is the physical thing. What the hell made my cells go berserk on me like that? It was awful to stare at that testicle, feeling betrayed by my own cells, growing and dividing out of control so badly that they were crushing the good cells out of existence. WHAT'S UP WITH THAT????

Did something go wrong with my testicular development when I was a fetus? Perhaps while I was a baby? Was I exposed to radiation at some point during my life? Did chlorine, PCB's, or other chemicals at swimming pools somehow damage me during my long swimming career? Did I wear jeans and/or briefs too often, and mess up my scrotal temperature regulation? Did I stand too close to the microwave? Did the local tap water affect me somehow? Maybe I used my cell phone too often? The list goes on and on, and for some reason I am always going from possibility to possibility.

But generally, I accept that I might never know the answer. There are a few things that inevitably come to my mind, like the time I got x-rayed (collapsed lungs, 1993) and was not offered a protective lead vest. There is almost no way to figure this stuff out, so I try not to get too caught up with it. Deep down inside, I pretty much believe that it was a developmental or genetic issue, rather than something I could have avoided in more recent years. That leaves me comfortable enough to make jokes like "I've been drinking Philly tap water all my life, and I only got cancer once," as I guzzle down a cup full of the beverage.

Why? (Spiritual)
The other "why" question is less rational and more spiritual. Why did this happen to me? Why do people have to go through things like this, and what is the meaning of it all?

Did I need to learn a lesson about the value of life? Probably not. For one thing, I already got that lesson back in 1993, when my lungs collapsed and the corrective surgery went bad, leaving me bleeding quite badly for several days before I started to recover. I would have learned the lesson then, but even before THAT, I feel I had a strong respect for how lucky I was to be strong, young, healthy, and able to enjoy my life.

Was it a good thing? Once in a while, someone will tell me that all things happen for the best. Unless I am too fed up to answer them at all, I argue adamantly that this is not the case. I went through a lot of pain and discomfort, my loved ones went through the agony of watching it and worrying about me, and no one was really the better for it. So no, I do not think that this experience was beneficial in my case.

I know some people have a hard time believing that anything can be ALL bad, but I swear, this one comes pretty darn close. The only thing that I can see as a remotely positive aspect of my illness is that I have now taken a huge interest in other cancer victims. Yes, this is a good thing, but it is a little oxymoronic to call cancer a good thing because it makes its victims care more about its other victims. If we eradicate all cancer someday, I doubt cancer victims will miss it for this empathy aspect. I have also heard it said that cancer brings friends and family together. I suppose I will have to admit that much.

Generally, the support I got from friends and family during my illness was the type I find most useful. I received advice on how to get through this or that discomfort, and basic words of encouragement, such as compliments on how strong I was being, and how good my humor seemed through everything.

I also got some religious email messages. Some people were content to tell me that they would pray for me - something I appreciate very much. Even in my most religious moments, I don't really believe that God sits in Heaven and says, "Okay, that's the 15th time someone prayed for Fred to get better. I guess I'll do that." But it certainly can't hurt, and it's a nice way to show you care. (And who knows... There is always the chance I am way off, and that prayer power can save the day after all.)

Other people, however, would make a comment like, "Everything will be alright, no matter what happens to you, if you trust in God." Okay, that is NOT an attitude I want to take. My job during my illness, in my opinion, was to do everything I could to get better, if not for myself then for Meredyth, and my family, and other people who were suffering on my behalf. It was kind of like hearing a football cheer that was like "Even if you lose, it's okay." It's a perfectly nice sentiment, but it just doesn't help with the task at hand. Yes, I do appreciate attempts to save my soul. I guess I am just too practical.  Okay, it's time for me to stop being a jerk to a lot of caring, well-intentioned religious people and just move on.

Conclusion