Tyler's Testicular Cancer Story: "OH, NUTS!" (Or lack thereof)
Written by Tyler
The Adventure Begins
Monday I make an appointment at Shore Medical services in Brick, NJ. I pick them cause they're in my insurance plan and they are able to squeeze me in. I'm here to have small lump on my right testicle checked out. A few months ago I notice it while taking a shower. A few days after it seemed to shrink in size I convince myself it was part of the original plumbing.
Three weeks ago while on the road in Sacramento I began to notice the lump again and this time I was feeling a continuous slight discomfort. On a scale from 1 to 10 (10 being kicked in groin) it was about a 2. John and I were stuck in Sacramento with a broken airplane. As usual we found a movie theater and a good Mexican restaurant. After the movie we headed off to a Mexican restaurant down the street. Over a margarita I tell him I think I have a problem with one of "the guys". He of course thought it was nothing but thought I should have it checked out.
So here I sit waiting to be called in. I have just finished a mountain of paperwork that a new patient must fill out. I'm brought in, Carol does my vitals and asks me further questions about my medical history, family medical background and what I'm in for. I tell her 5 to 10 but maybe 3 with good behavior. I don't think she got it. My Dad has/had throat cancer. His mother had breast cancer and my mom had a malignant mole removed years ago.
As Carol leaves she says doctor Mehra will be right in. I stop her before she can leave and explain I had made an appointment with Dr. Armbruster. Carol tells me he's at lunch and it would be sometime to see him. So I opt for Dr. Mehra. Just before Carol leaves she says that Dr. Mehra is a woman. Oh just great! So now I'm thinking I can't back out for two reasons. One, I don't want to wait, and second I'll look like a weenie that can't handle being seen by a woman doctor regarding a testicle problem. It didn't take to long to reconcile with myself I just needed to have this thing looked at and get some answers.
I couldn't have been happier with Dr. Mehra. Very professional and she really listened. She called Carol back in when she did the physical exam on the testicle. I'm sure it's required to have another person in the room when a female doctor is doing an exam on a male. This had been the first time I had been naked with two women since college. All I needed now was a Barry White CD and some tequila.
With that over with Dr. Mehra said I need to have this looked at by a Urologist. We looked for one within my health care program. By the afternoon I had appointments with two Urologists. One for Friday with a Dr. Chapman and the other for Thursday with Dr. Mahmood.
I show up at the Doctor's office. Again I'm a new patient so out comes the pen and mountains of forms. Once again the nurse brings me back for vitals and questions. Dr. Mahmood comes in and we talk for a few minutes before the exam. After the exam the tone of the visit changed rather quickly. Just based on his physical exam he was confident that I was going to have to have the testicle removed. He was going to have his gals make an appointment for an ultrasound today. Followed by blood work.
I walk across the street to Toms River Community Center to check in with Outpatient Registration. I could tell the lady behind the desk was suffering from years of battle stress on the registration front-line. Ya know, that "rode hard and put away wet but I'm still not taken any bull****" look. So I kept all my answers short and sweet, never volunteering any other miscellaneous info. Nor did I dare ask questions. I wanted to keep the good testicle that she would have undoubtedly removed from my body had I pissed her off.
Invite the Cooks
So now I'm having doubts that any of this is going to turn out well. Time to make the phone calls. First was to dear ol' dad. I call him first since he has been through this crap recently with his throat cancer. So Dad is invited to meet me at Community Hospital. Of course it's assumed I have shot myself with my new nailgun. This of course is totally plausible.
My first comment when dad shows up is "Well, it must run in the family". He didn't know what I meant. I said he had experience, I never said he was sharp. To this day I'm still responsible for setting the clocks on his VCR and wristwatches.
Just before the ultrasound I called mom and told her where I was. I didn't explain yet what was going on. She thinks I had another splinter accident. When I was 17 I turned around on our wood deck and proceeded impale my big toe on a two inch splinter. No one else was home and I had to drive myself to the hospital using only my left foot for the gas and brake.
A Girl & KY Jelly : Not Always A Funtime
4:15pm The Ultrasound
Helen, the ultrasound tech, was a nice girl but a little cold. Not a very good conversationalist. If you've got KY jelly and my "boys"in your hand, the least you could do is try and get to know me. This procedure is exactly like the one they do on pregnant women. Except all we found were tadpoles, no stem on the apple here. You get into your birthday suit and lay down under a blanket. She smears KY all over your "boys" and grabs a big white rubber mallet looking thing. "Hey wait, I'm kinky but I hardly know you." With one hand she maneuvers the mallet, while the free hand works a keyboard with the dexterity of a Microsoft programmer. Once finished she leaves and says I can get dressed. "What, no cigarette?"
OK so that was quick and easy. Next comes blood work. For me no sweat, had this been my twin brother, I like to imagine how they would draw blood from a 240 lb guy in the fetal
position. By the end of all this it's too late to visit Dr. Mahmood with the results from the ultrasound. This didn't bother me one bit. He had wanted to remove the testicle tomorrow on Friday. This delay had bought me one last weekend of my life with all my bits and pieces.
On the way back from the hospital I called mom to inform her what was going on. She took it well. She was folding laundry and I stopped by the Laundromat to help fold clothes with her. At home I look at the ultrasounds for the first time. There were actually four masses total. One was located near the surface and was a solid white.
My twin brother comes home and I tell him the scoop. What's the first thing he does, checks himself out.
This time mom and dad tag along with me back to Dr. Mahmood's office. Dr. Mahmood puts up the ultrasounds on the light box and takes a look at them. The Radiologist had faxed over his report to Dr. Mahmood already. This appointment was simple and to the point. The testicle was coming out. After that done, most of the questions would be answered later.
Monday Game Day
Mom drives me to Shore Outpatient Surgery Center. The clothes come off and the gown goes on. An IV is started, vitals are taken and the last of the paperwork is signed. The nurse is especially concerned that everyone is on the same page with respect to which testicle is going to be removed. Years ago I lived in Tampa. There was an incident at Tampa General that made national news. Doctors amputated the wrong foot of a patient. I was determined not to let that happen. At home I took a magic marker and on my leg drew an arrow to my groin and wrote "This One ---->." I'm wheeled into O.R. and Dr. Mahmood makes his appearance for the first time. I start to feel woozy and know that I'm going under. I even mumble "Here we go" then it was lights out.
One second later I'm waking up, groggy, sore, disoriented and in pain. I am utterly amazed after reading hundreds of posts on the web, that nobody talks about the pain. There was a lot of it. I don't know what it is, the doctors make it less than it is, people posting make less than it is. Why isn't anybody fessing up to the pain? If you're about to go for this orchiectomy, prepare yourself, it HURTS. It's going to be swelling, sore muscles, sore skin and black & blue. My incision was 5 inches long and closed with 16 staples. After standing for only a minute it felt like I was being jabbed with a red hot knife.
In the recovery room I start to shiver uncontrollably. The nurses start to pile on the blankets. They help a little. The first attempt to get up and leave fails. I know I'm about to fall over. I tell the nurse. She thinks I need to lie down some more and puts the oxygen hose back in my nose. She says my lips are a little blue. So we wait another hour and after some cranberry juice and water I feel a little better.
I make it home by the grace of the left over anesthesia. Later that day I take the first pain pill and it helps me sleep. That's all I want. In the middle of the night I have to get up and go to the bathroom. I have to call for my mother and brother. I need to be pulled up without letting my waist bend. It's excruciating. Getting back in bed is no easier. Your muscles have been cut and they are screaming at you for it.
Tuesday - D+1
Just pain pain pain. All I manage is lying in bed. I avoid solid foods except for some watermelon. I can't imagine how much it's going to hurt when I have to do a #2. I make it throughout the day taking just two pain pills. The prescription allows for one every four hours. I want to avoid them because they make you constipated. The nurses told me before I left to get a stool softener. Oh, the fun.
Wednesday - D+2
A tiny better. I manage a walk to the kitchen, about 20 feet. Later that day the event comes that I have been dreading. It went better than I thought. My neighbor brought over a toilet seat extension that raises the height of the seat. Now I was truly on my throne. Get one of these, it's a must have. The pain was still severe but I was becoming used to it. Later in the evening I managed my first shower and afterwards removed the dressing per my instruction sheet. I couldn't believe my eyes. I couldn't comprehend why such a small body part needed to come through such a large incision. I was mad! Things also started to turn black and blue. I mean EVERYTHING! But you have trust the people that spent years at medical school.
Today I manage to relocate to the big comfy chair in the living room. I can manage no more than 5 minutes of standing before the "hot knife" of pain returns to the groin. With my laptop in hand I check my emails. I can't believe my eyes. My dad has sent me an email asking me to email this girl in North Carolina. She is a sales person for This End Up and she's 33 yrs old and funny according to my dad. He wants me to send a hello email with a pic. I'm laid up in bed with TC, 16 staples in my groin, stool softener and a toilet seat extender and my dad is trying to fix me up with a girl. All I could do was stare, then I started a little laugh. Big mistake!
I have my second big date with the toilet seat extender. The problem is I was in the middle of a phone call with my insurance company going over the short term disability application when nature called. If that guy only knew. So while I'm doing my business, this guy's doing his. But after we're done (I'm not) he just wants to gab away on the phone when he learns I'm a pilot. "Wow, what type of plane do you fly? Where do you fly? Ever been scared? blah blah blah"
Well that's the long and so-so story. As of 6 days after the op I know that the tumor was malignant, the full pathology report is not back yet. The blood test came out well. They say the results indicate that it hasn't spread. We'll know this Monday when the full pathology report is in and I get a CAT scan after the staples are out.
Some funny miscellaneous stuff that was said or brought up over the last two weeks:
New nickname from friends - "T1" or "Testy"
They say I look like I lost weight - yeah about 10 grams.
I'll be walkin in circles from being lopsided.
Put in a metal one with a ball. Like a cowbell, people will know
6/30/2004 Wednesday D+9 Days
"Gentlemen - Start your CAT Scans!"
Ok so now we are up to the CAT Scan. My Urologists has ordered a scan on my pelvis, abdomen and chest, with and without contrast. Yesterday I trek back to Community ( the same place I had the Ultrasound done) to schedule the CT. There they give me a bottle of what LOOKS like milk. What I get is a big bottle of Barium Sulfate. Yumm. I'm to drink this stuff 2 hours before the scan, show up at the hospital and drink another one 1 hour prior.
OK so now your wondering what is Barium Sulfate? Well here it is below straight from their website.
Barium Sulfate Suspension
Brand Name; Lafayette
Description; Butterscotch-vanilla flavored, 2.2% w/w barium sulfate suspension. Ready-to-use.
Features and Benefits; Exceptional flavor greatly enhances patient acceptance. Fast transit time in G.I. tract reduces patient preparation time. Ready-to-use formulation eliminates mixing and measuring. Indications and Applications Opacification of the gastrointestinal tract for computed tomography (CT) examinations.
Got it?! OK, now let me break it down for you in human terms.
Barium Sulfate Suspension - A.K.A - CRAP
Brand Name; Drink This Stupid
Description; A pathetic attempt to create a placebo taste effect of butterscotch in the poor shmuck's mouth that has to drink this crap.
Features and Benefits; Exceptional flavor of ground up chalk, sweet-N-lo with a hint of Elmer’s white glue. Don't stray far from toilet. Toilet paper won't be necessary for the entire day.
This stuff should be called EZ-FLO. So I drudge through the second bottle while in the waiting room. All around me are people cringing each time I take a swig. I have a sneaking suspicion they're right there with me in my suffering.
I'm led from the waiting room by the CT Tech. She walks ahead of me opening each set of double doors along the way. Every time we come to a set of doors I stretch my arms out and yell, "Open Sesame!" Then I comment to her, "Want to see that again?" I repeat this through all three sets of double doors. She wasn't laughing.
I hook up to an IV that has the contrast solution in it. The tech leaves me alone stretched out on the table. I can see all around me very well. This CT Scan is much more roomier than the MRI I had done back in 2000. So all of a sudden I hear this whirring sound and I'm tellin ya, it was exactly like a jet engine starting up. I see through the panel edges pieces of the scanner rotating around me. The table moves me in and I notice a red laser dot on my chest. Just like a sniper rifle. I look up and see where the beam is coming from. Smack dab next to it was a label, "Don't look into laser light". I swear I'm not making that up. Who puts a sign like that NEXT to the laser emitter. D'OH. I pick up the copies of the CT and head home. This night I pack for a stay in Hoboken with friends after my visit at SLOAN in NYC.
7/01/2002 D+10 days.
My parents and I drive from the Jersey Shore to the Atlantic Highlands to catch a ferry to the city. From 34th St. we catch a cab uptown to SLOAN. We locate the office very easily. I have everything with me. The ultrasounds, CT Scans, Pathology, Blood work & and all associated reports, except the reports from the CT scans. However, later that morning they would be faxed to SLOAN from Community.
I check in. At SLOAN you get a credit-card-like ID card. OH boy, now I'm an official member of the club. I wonder when my fan mail will start rolling in. We meet with an assistant to Dr. Sheinfeld and I am asked a plethora of questions by him. A lot about the history of this. He asks about back pain. The light bulb went on. The pain in my testicle started June 1st. In the last week of April and the 1st week of May I had experienced some good amount of lower back pain. I thought I had pulled some muscles while loading some passenger luggage.
Dr. Sheinfeld comes in and we start talking. Within a few minutes it went from him describing how TC works, to "this is what has happened to you". "This is what we found". The cancer has spread to your lymph nodes. Stage 2B. TOTAL SHOCK. I was absolutely expecting to hear that I was fine, have lunch in the city & head off to Hoboken.
We ask a gazillions questions. We then get sent to Dr. Bosl, SLOAN'S Department of Medicine Chairman. His specialty, Oncology. We then get into everything. Too much to say here. I'm told because of the size of tumors in the nodes, after chemo, I will most likely (95%) require a RPLND operation. This sends me into outer orbit. We break for lunch at 1 pm. I can see mom is a wreck on the inside. I see her cry only once in the waiting room. She feels bad for me and I only feel bad for her, not myself.
I'm to be given 4 cycles. 5 Days on (3 hrs), 14 days off. The chemo is Cisplatin & Etopside. Two other drugs orally to combat nausea and vomiting and other side effects. Instead of a morning trip to the city, we don't leave until 4:30 pm. I've been up since 6 am. I'm totally exhausted mentally. I say goodbye to mom and dad. They head back the ferry while I take the train to Hoboken. I needed to get out of the house just for two days. My mom has been caring for me like an angel and she needed a break as well.
In Hoboken I meet with great friends, Damien and Sarah. That night we go to a friend's Doggy Birthday party. I needed it. Woof Woof.
To be continued...
ALSO VISIT OUR ONLINE SUPPORT FORUMS WHERE YOU CAN INTERACT WITH HUNDREDS OF OTHER ACTIVE MEMBERS!