Introduction

So, I'm starting a blog to give updates on my testicular cancer treatment and how Anne and I are dealing with them. I got the idea of a cancer blog from a coworker (one who I barely know at all, but who seems like a very good guy) who gives updates on his leukemia treatment at http://joes-blasts.blogspot.com/, though it looks like such things are pretty common. He seems to be recovering well, even after a relapse, so it's a positive story. My story, unlike his, will involve frequent references to my testicles, which I'm guessing will cause some workplace networks to block you from visiting this blog at work (or maybe just cause the network administrator to think you're a bit weird...). I'm generally terrible at updating these sorts of things, but my goal is basically to note all the major updates here. To all of you who've called or sent nice notes over the last two weeks: Thank you so much! It's really meant a lot to me, and I'm sorry I'm so terrible at responding to e-mails.

You can certainly feel free to forward this blog's address to anyone you think might be interested (though I'm guessing this is of fairly limited interest :), but I'm not having it indexed on search engines or anything, so this should be a (relatively) secure blog. In any case (however you got here), please feel free to comment!

While years of teaching and writing has made me a bit long-winded, this post is pretty long, even by my somewhat verbose standards. I'll try to tone it down a bit in future posts. In any case, the diagnostic stuff is at the beginning, followed by everything else.

 

My Diagnosis and Treatment Plan

The bad news (beyond the mere fact that I have cancer) is that my pelvis-chest CT scan revealed metastasis to my abdomen and lungs. The good news is that metastatic testicular cancer, unlike nearly every other metastatic solid tumor, is very treatable, with 5-year-survival rates varying from 40% to 90%, depending on the locations of metastasis and the aggressiveness of the tumor (my tumor is nonseminoma, which is slightly more aggressive). If the metastasis is contained to the lungs and abdomen, and if my blood markers stay relatively stable, I should be in the 90% range (woo hoo!), but I won't know for sure until I get a brain MRI sometime next week.

There aren't really many known risk factors for testicular cancer (TC), and I don't have any of them: no undescended testicle, in utero exposure to DES, steroid use, etc. And as far as general cancer risk-factors go, I thought I was doing fairly well (if not quite perfectly): I'd only smoked for a bit in college (and never very seriously or consistently), I've been the next-to-best-thing-to-a-vegan since I was 19 years old, and I exercise lots. I drink perhaps too much beer and too much coffee, but I think my consumption of both is pretty well within social norms. I am a (Caucasian) male between the ages of 15 and 35, though, which is the group most affected by TC.

If you want to find out more about the testicular cancer in general, both BMJ and Mayo Clinic have good overviews. The National Cancer Institute (NCI) maintains a far more detailed page, in case you want to see recent research, details about treatments and expected outcomes, and information about ongoing clinical trials.

As far as treatment goes, I'll be starting preparation for chemo next week, with the first chemo cycle (of cysplatin, I think) scheduled to start Mon. February 27. This will be one month out from my surgery, and will give them time to do all the prep they do (implant a medport, take baseline hearing and ventilation, do a chemo teach with a nurse practitioner, arrange for sperm banking, etc.). There will be a total of 3 three-week chemo cycles, each separated by a three-week recovery period. The chemo cycles will be 5 days the first week, 1 day each on weeks 2 and 3, and then 3 weeks off. There are plans for eventualities, too, though it hopefully won't come to these: If there's brain involvement, there would probably be radiation treatment; if they need to have follow-up surgery (after the chemo is complete) to remove the nodes from my abdomen, I would probably head to Indiana University Hospital in Indianapolis.

Here's the timeline so far:

Awkward Stories About My Testicles (October 2011)

Heather -- one of Anne's, Kramer's and my old college friends from Winona -- comes to town the weekend of October 7th through the 9th. Over the weekend, Kramer, Heather, and I end up riding our bikes around town quite a bit. I notice that my old, soft bike saddle is torn and ratty looking, and Kramer (very kindly) gives me a new, hard saddle to replace it with. The installation process is a bit comedic, as we end up searching spending 30 minutes searching Kramer's apartment for a dropped screw, and finally find it lodged in one of the wheels.

When I start riding with the new saddle, I notice that my testicles are mildly uncomfortable on the new seat. Like Lance Armstrong before me (a survivor of brain metastasis, which is reassuring), I think this must be due to my own bike-riding awesomeness, and not due to the onset of testicular cancer. (A note: While I do want to kick myself about all these missed opportunities now, the NCI no longer recommends self-screenings for testicular cancer, as it turns out that telling young-to-middle-aged men to spend more time considering the shape of their genitals has not led to better survival rates.)

By late October, I'm still a bit uncomfortable on the new bike seat, and I at some point notice that my right testicle is significantly larger than the left one (I don't really remember the exact timeline on this, but I clearly remember thinking about it exactly once for about 15 minutes, and then not again until the night of January 11h). During these 15 minutes, I even managed to formulate a google query that, somewhat miraculously, produces no links whatsoever to pages concerning testicular cancer. I tell Anne, "My right testicle is kind of big, isn't it? The internet says that this is OK, though." (Not actual dialogue.)  During this whole time, there's really no discomfort at all, though, except when I am riding my bike. Even then, the discomfort is mild at worst, and I continue to ride my bike the two miles to work until the beginning of December, when the weather makes it impossible.

...And About my Nipples (November and December)

I train hard all fall for the Rattlesnake Master 5K, which is run on Sat. Nov. 7 at Meadowbrook Park in Urbana, IL. I'm really happy with my time of 21:24, which puts me at 12th overall and 1st in my age group (and is pretty comparable with the times I ran 15 years ago, when I was 30 pounds lighter). While training for the race, I start experiencing tenderness in both of my nipples, which I again assume is an indication of how super-hardcore of a runner that I am. (The good Bayesian in me probably should have guessed something was up at this point, as it's pretty unlikely that running would cause both nipples to be consistently tender in the same way, and that the degree of tenderness would not covary with training intensity over the succeeding weeks).

As December begins, my stress at work increases as, based on the way the previous project went, I have to have my work reviewed en masse. I don't sleep especially well, and in general feel a bit off, but I assign this to work-related stress. The month also has a few nice upsides though: I officially graduate from the University of Illinois on December 17th (Mom and Dad came down to see me hooded), and (on the same weekend) get to hang a few times with Patrick and Becky, who are visiting from Seattle, WA.  Toward the end of  the month, Anne and I head north for the holidays, and have a good time visiting everyone. We go from Champaign to Eau Claire to Winona (just for coffee, no visiting) to Rochester to Minneapolis to Monticello to Eau Claire to Madison to Champaign. Everyone has excellent food, we play lots of cards and board games, and there is plenty of New Glaurus and Leinenkugels. Again, I don't sleep super well, but I certainly don't feel unhealthy: I manage to fit in a few 60+ min runs in between my Olympian eating bouts. On Dec. 29th, I buy a copy of Florence + the Machine's Ceremonials, which I (on some level) realize is a bit melodramatic, and which I've been listening nonstop to ever since. My favorite YouTube video for the first half of January is easily the AOL session's version of "Shake it Out."

Hogswatch and After (Early January 2012)

My new year's resolutions are to become healthier by cutting back on weekday cookie and beer consumption (I average about 1-2 of each per night). I do really well on these goals for about two weeks :). Anne and I would also like to get pregnant, and we vow to try harder (!). Out of necessity, I haven't had many weekday beers recently, but my cookie consumption has really taken up the slack. And as for the other goal: we're doing our best, and are talking to the medical people about what we can and should do. Anne and I got back into town on Jan. 2, and I went back to work on Jan. 3. The first week back was pretty stressful (for the work reasons mentioned earlier), but I didn't notice any other symptoms.

Wed. Jan. 11: I spend most of the evening working on a project I have taken home with me (one of the projects that is to be reviewed). At 9:00, I quit working, and Anne and I decide to watch the first half of Hogfather, a movie adaptation of a Terry Pratchett novel in which Death must fill in for a kidnapped Hogfather (the Discworld equivalent of Santa Claus) to deliver toys for Hogswatch (i.e., Christmas) while Death's granddaugther, Susan, investigates the cause of the disappearance. It's pretty good, and I discover I remember almost nothing about the plot, even though I'm certain I've read the book within the past 5 years.

At 10:30, we turn off the movie, and Anne is in the bathroom ready getting ready for bed. In my best Al Bundy fashion, I sit down in front of the computer to check sports scores with my hand in my boxers (Minnesota beat Indiania, and I make a mental note to mock Eric [an Indiana grad] about this). I now notice that my right testicle is now smaller than my left testicle, and is also misshappen. The internet assures me that this is not normal, and "nipple tenderness" pops up as an additional symptom of testicular cancer. Even before I tell Anne, I request a physician appointment for the next week on Carle Clinic's website.

Thur. Jan 12: I discover in the morning that Netflix has taken down Hogfather, so I will be unable to watch the rest of it (for the bucket list: watch the rest of Hogfather). When I check my email during my break at 10:00, I discover that Carle wants me to call them immediately to set up an appointment. I do, and they schedule me an appointment for Friday with a resident working at the new clinic at the intersection of Mattis and Curtis.

Fri. Jan 13: I meet with the resident and tell him my symptoms. He's a very nice, very competent 30-or-so-year-old who trained in India and is doing his residency here in Champaign. He is also very obviously a resident, in that he does things precisely according to procedure (e.g., he notes my somewhat high systolic pressure, and will later in the month give me a blood pressure log to record my BP). In general, though, I really like and trust him, especially when compared to the resident I'd met with twice last summer (for an athletic injury and for insomnia), who had (twice!) given me prescriptions that pharmacists had told me were a bit loony. He orders an ultrasound for the following Thursday.

At some point around now, I begin watching the YouTube video for "Cosmic Love" like a Telly Tubby (Again! Again!), and occasionally worry this means cancer has spread to my brain. The Mayo Clinic web site reassures me that headaches, blindness, or seizures would be more common signs, though.

Sun. Jan. 15: Sometime around noon,  Anne discovers (much to her chagrin!) that the Packers do not automatically advance to the Super Bowl, merely on the grounds that they are so good. Like Brett Favre before him, Aaron Rodgers bounces various passes off receiver's hands, and the Packers lose to the Giants at Lambeau, despite Anne's rendering of Clay Matthews in crayon. Anne later tells me this is when the month really started to head south. 

Thur. Jan 20: At 7:00 AM, I make my first visit to Carle's main campus to visit the radiology lab in the basement of the north clinic. A nice, fairly quiet, somewhat dorky-looking male technician in his late 20s does the scan. All goes well, though it for some reason strikes me as ominous when I am wiping heated ultrasound gel off myself with a towel in the (somewhat creepily) quiet basement of a hospital before going to work.

Fri. Jan 21: At lunch, I tell Rachel (one of Anne's close friends, and I think the only person other than Anne who'd known I'd been going to Carle) that I hadn't heard from the doctor, which meant that things were Awesome! At 3:30, the resident calls, and tells me that he's scheduled a meeting for me with a urologist on the following Friday, and that he also wants me to get a blood test on Monday or Tuesday. Argh.

Church, Jury Duty, and Cancer (Late January)

Sun. Jan 22: Anne and I go with Kate to the Unitarian church in Urbana. I think it's our first visit to a church in CU, other than a few visits to the Catholic church near our house with our parents. Anne whispers to me that she is considering lighting one of the candles for me (they have some sort of candle lighting ceremony), but she's afraid of burning down the church. I assure her that this is OK.

The pastor reads selections from some various religious traditions (plus a Mary Oliver poem), and in his sermon talks about the problems that each religious tradition sees as central (Buddhism = suffering; Christianity = sin; Islam = selfishness). He concludes that, while these religious traditions are probably right in terms of what the problems are, it doesn't do too much good to spend your time obsessing about the nature of the central problem of existence, on the grounds that doing so probably wouldn't make you less apt to suffer, sin, or be selfish. I thought the sermon was a bit a scattered, but I grant that general idea is probably decent advice for a philosopher. On the way home, Anne and I tell Kate a little bit about what's been going on.

Mon., Jan. 23: Jury duty! I go to the courthouse in Urbana and listen to instructions concerning jury duty. At 1:30, we get to go home, as no trials need jurors.


Tues, Jan. 24: I get a blood test at the Carle South Clinic at 4:30. They take 3 vials.

Wed., Jan 25: In the morning, I go back to the courthouse, and actually make to a courtroom where a judge is selecting the jurors for a criminal trial. The case seems exciting, but my name isn't called, and I go back to work around 2:00.

At 3:30, the resident calls and informs me that my Beta-HCG markers are elevated. He doesn't make a diagnosis, but he says that counseling is available, and I know that I have cancer. I sit in my office and stare very intensely at the trailer park across the street for about ten minutes. I call Anne and tell her, then barge into Kate's office and ask her random (and mostly incoherent, I'm sure) questions about what I should I do about all the work I don't know if I'll be able to do. Kate handles things very well (Thanks, Kate!). I wander around the office a bit, and go home at 4:30. At around 7:00, I talk to my mom for around 10 minutes, and talk to both her and my dad later in the night as well.

Fri. Jan. 27: In the morning, Anne and I go to the meeting with the urologist, who will also be my surgeon, at the main Carle campus. The urologist diagnoses me with cancer, though there really isn't any dramatic moment, as we all knew what was coming. The first step is a right radical orchiectomy, in which the rest testicle is pulled out through an incision through the abdominal wall (here, "radical" refers to the location of the incision). The urologist, like almost every other medical professional I've dealt with during the whole process so far, seems both sympathetic and well-informed.

We go to preop to some paperwork, and then have an exciting drive home, which begins with us forgetting we need money to exit the parking garage and includes us sitting in front of a stopped train for about 15 minutes. We stop at Schnuck's to buy deli food (sadly, they have no potato wedges, which was really the only thing I could think of that I wanted to eat), and Anne picks up a copy of Crazy, Stupid, Love, noting that she thought it was funny the first time, and she didn't want to risk an unknown movie. We'd originally seen the movie last year in LaFayette, IN, where we went for our anniversary.

This is the last day I'm able to run, and I go out for an easy four miles. Later in the day, I e-mail work about everything (they are super accommodating and nice), and we meet people to eat Mexican food and drink beer at the Fiesta Cafe.

Sat. Jan. 28 and Sun. Jan. 29: Mom and Dad come down for the night, and we have a fun weekend, which includes dinner at Siam Terrace on Saturday night and a walk around Crystal Lake park on Sunday morning.

Mon. Jan. 30: My fasting for surgery starts at 12:00 AM Monday, with no liquids after 6:00 AM. I stay up most of the night working on (mostly philosophy-related) things, and have a medium-sized cup of black coffee at 5:30. I'm at the hospital by 9:00, am prepped and partially sedated by 10:45, and am completely unconscious from 11:30 to 1:00 or so. When I wake up, I tell them my pain is a "2", but realize within a few minutes that I must have forgotten how to count, because this only gets me 1 tablet of vicodin-tylenol, and I'm pretty uncomfortable until 5:00, when I take two more, plus Aleve. I sleep most of the afternoon, then wake up in the evening to watch Shakespeare in Love with Anne. I remember that this movie, which was released in the winter of 1998, was the second movie I saw at the Winona 7 movie theater (the first one being What Dreams May Come?) and I think this might have been one of the first times I met Elaine (or am I making this up, Elaine?).

I am home on the couch recovering on Tuesday and Wednesday, which actually isn't too painful. I'm able to walk a mile unassisted (and vicodin-free) by Wednesday night, so I head back to work on Thursday. I've had  cold for a while (as has practically everyone else I know), and it starts to move into my lungs.

In Search of Mr. Kurtz (Early February)

Fri. Feb. 3: When I go see the resident in the afternoon, my nipples are still tender (and the lymph nodes are a bit enlarged), but he doesn't seem overly concerned about it, given my cold symptoms and the recent surgery. I get a bottle of barium to drink for my CT scan the next week, and he also asks me to get a semen sample on Monday. When I get home, Anne's parents have arrived for the weekend, and I cook up a vegan version of Cincinatti chili.  Over the weekend, we eat some good food, and I get to drink a little beer, after not having any all week. On Sunday, I root for the Patriots.

Mon. Feb. 6: I go to the lab at Carle's main campus and say awkward things about having a lab scheduled.  The receptionist is confused, but then tells me that they don't do that sort of stuff here. She gives me a sterile container and the phone number for the reproductive health clinic.

Tues, Feb. 7: My CT scan is scheduled for 11:00 with my fast starting at 6:00 and barium drinking at 9:00, 10:00, and 11:00. The barium isn't terrible, but doesn't live up to its "berry blast smoothie" billing. At 10:45, I walk confidently down to the radiology lab in the north clinic (where I had my first ultrasound), only to be told that my scan will be done in the Cancer Center. I have a strange feeling walking back to the south clinic, which I'm not quite sure how to explain. Not panic, or even sadness, but something. 

Carle's brand new Cancer Center is right next to the south clinic parking garage I normally park in, and I've walked the corridor by the entrance at least a dozen times in the last month. Until right at this moment, though, I think I've still had some sort of idea that what I had wasn't really cancer, or at least not the sort of cancer that the oncologists in that building cared about, or that might involve dedicated CT scan machines with trained stuff. And then, suddenly, realizing that this was something like the real beginning of things. Later, in a somewhat more literary mood, I'll think of Marlow (from Conrad's Heart of Darkness) wasting away the months at Central Trading Station while waiting for parts for his wrecked ship, becoming more and more bewildered by odd stories of a "Mr. Kurtz."  Eventually, Marlow's ship is fixed, and he leaves Central Station to head upriver in search of Mr. Kurtz, which is the when story really begins.

The CT lab technicians (two young women) are, in any case, much nicer than the strange characters that Marlow encounters at the Central Trading Station. I tell them I have been coughing up gunk from my cold and one asks: "Is there blood? I have to ask." I tell her no and then realize a few minutes later that she was probably checking for signs of TB, which I grant would be a crappy thing to take into a ward of immunocompromised cancer patients. The CT scan is over in 20 minutes, and I am back at work in an hour.

Wed. Feb. 8: It snowed lightly last night and I have just gotten back into my car after scraping the windshield when the urologist calls. He says that there were unexpected results on the CT scan, with metastasis to the abdomen and lungs evident. He says that he will do his best to track down an oncologist to meet with me before the end of the week. Within an hour, his secretary calls back and says that they have found an oncologist, and that I will meet with both him and the urologist on Friday afternoon.

Thurs. Feb. 9: Before going to work, I drop off a semen sample for analysis at the reproductive medicine lab in south Urbana. The parking lot is relatively small, but I nevertheless manage to lose my car for at least ten minutes.

Fri. Feb. 10:  Diagnosis day is finally here although, like last time, we already know the essentials. I talk to the urologist for a few minutes, who says that my surgery went OK and that, hopefully, this will be the end of surgery for me. In the unlikely event that more surgery is required, I will probably be sent to IU hospital in Indianapolis, which is the world's leading testicular cancer research cancer, and which is where Lance Armstrong was treated.

Anne and I then meet with the oncologist to discuss staging and treatment, the results of which I've discussed above. The oncologist is a very talkative, very friendly doctor originally from the Philippines, but who grew up in Chicago and was an undergrad at the University of Illinois. He talks about the planned course of treatment, and encourages Anne and I to talk to the people at reproductive medicine about semen storage before beginning chemo. I get to experience first-hand the mess that is the American health insurance system when we try to submit my planned brain MRI to the Health Alliance computer system, which keeps wanting to reject it on the grounds that I am not currently experiencing a seizure or crippling migraine pain. We find a way to get it through, though, and schedule all of my appointments for the next few weeks.

Either/Or

As I write this, I am sitting in my study on a gorgeous Saturday morning in February. I went out with a group of friends last night, including a few who I had not seen for a while, and who I ended up talking a bit about my situation with. I didn't fall asleep immediately (no Ambien, since I had a few beers), but ended up getting seven solid hours of sleep. I am still unsure how I will, or ought to, respond to all of this. I am obviously not looking forward to the chemo, but I feel confident that I can solider through it (though I probably won't be running the Illinois marathon this year).

This morning, I am worried most about the brain MRI, which is what will ultimately determine my prognosis. I have not felt right for the last month, but I know that there are a million reasons why this might be, and I find it reassuring that the insurance company's computer software was so reluctant to sanction the MRI. Plus, there is always Lance Armstrong (who every doctor reminds me about), who survived that worst case scenario, and who went on to win the Tour de France. At this moment, of course, I'd be willing to trade any potential Tour de France victories of mine for a negative result on the brain MRI, but I know that I can deal with that, too, if it comes to it.

And that's it. I hope that this post finds you all in good health and good spirits.