(Some of the) Test Results

AN UPDATE: The HCG-testing-machine got fixed, and I got my results: <0.5, which is what I'd hoped to see. This doesn't necessarily mean that the lumps near my lungs are not cancerous, but it's a big step in the right direction. In any case, I think there is still reason for (cautious) optimism: it's more likely than not that the lumps are not cancerous (and thus, I wouldn't need any more chemotherapy) and, even if they are cancerous, the salvage chemotherapy would be likely to work. Bad HCG levels would have made both of these propositions more doubtful.

I just wanted to post a quick update about my test results, which were a mix of the (1) good, (2) bad, and (3) indeterminate.  Here goes:

• The good--the tumors in my abdomen are gone, and the tumors in my lungs are either reduced in size or gone. The CT scan showed no sign of disease progression and would be consistent with remission.
• The bad--there are three small residual masses on my lungs, which may be either scar tissue or residual cancer. Provided my HCG levels are not rising (see next point), this will most likely mean major surgery to resect these remaining masses, and test them for residual cancer. If there is residual cancer, I would undergo an additional two rounds of "salvage" chemotherapy. The surgery would likely be at Carle, and would likely take place sometime in the next two weeks or so. My guess is that I would be in the hospital for around a week, depending on how things go.
• The indeterminate--The HCG testing machine at Carle is broke, which means that I may not get these results until sometime Tuesday (because of the holiday weekend). If my levels are stable, there is a decent chance (I would guess over 60%, though its tough to find exact statistics) that the lung masses are not cancerous; if my HCG levels are rising, this would almost certainly be indicative of active cancer.

In any case, that's all I know for now. I'm doing OK, though am obviously a bit frustrated about the possibility of having to wait another four days to know anything more definite. I think Anne and I may head to the new YMCA to work out for a bit, but we should be around for most of the day. I hope everyone is doing well (and thanks so much for all the wonderful birthday cards and gifts!).

The Third Time is the Charm, Right?

..and this is the promised follow-up in which I describe my third  (and hopefully final) cycle of chemotherapy. There's nothing super-exciting to report since my last post, really, and you can scroll to the end if you just want to know the plan for what's to come. Here goes:

Some awesome embroidery by Becky O'Donoghue. 

Anne and Kramer Have a Birthday (Week 1)

Cycle 3 begins on Friday, April 20. Just as was the case with the last cycle, I get to spend Friday in the Cancer Center, the weekend in the hospital, and then head back to the Cancer Center for Monday and Tuesday. Friday  is more or less routine: I go early for tests, eat breakfast in the cafeteria, meet with the oncologist, and then spend around six hours getting chemo (day 1 is the only day when I get all three chemotherapy drugs, and is thus the longest day).

My meeting with the oncologist is more or less routine. My blood chemistry (e.g., iron and hemoglobin levels, white cell counts, etc.) is pretty much OK, and there's nothing particularly alarming about my cancer markers, although I find myself worrying a bit about them anyways. My HCG levels are up to 2 (from 0), but this isn't statistically significant, and anything under 5 is considered perfectly normal. My LDH levels are 260, which is not normal, but this could be (and probably is) due to the fact that Neulasta shot I got made my bone marrow go a bit crazy with the whole making-new-blood-cells thing, and the elevated LDH levels are reflecting this (I've read somewhere that, if they are really concerned, there's some way of doing a cell-specific-LDH test, but I'm guessing this is fairly costly).

Chemotherapy is also more-or-less routine: they hook me up to a bag of saline, give me my pre-meds (steroids, Tylenol, antinausea drugs, Benadryl), then give bleomycin, cisplatin, and etoposide. I talk to the nurses some, who I've gotten to know fairly well (Mary just got back from Italy and Leslie has gotten accepted to the Nurse Practitioner program at the U of I). The stronger steroid I get with cisplatin keeps from sleeping all afternoon, though, which is nice, because Friday, April 20, is Anne's and Kramer's (and also Hitler's) birthday!


At Eric's behest, Kate and Graham host a party for Anne and Kramer, and I manage to make it until around 10:00, which I'm pretty impressed with. We have some pinto beans and corn bread along with some brownies and chocolate cake (vegan and otherwise) and various other accoutrements (can you believe that I spelled accoutrements on only the second try?). Around 8:00, a group walks downtown to see a friend's art opening, but I'm a bit too tired to walk the half-mile, and some people hang out with me and watch YouTube videos.

Anne and I spend the weekend days in the hospital, where I get chemotherapy. There's a new (well, new to me) nurse who I am a bit leery of--she doesn't seem to know how to use the anesthetic spray that they often use before sticking a needle in my sport, and she only gives me half as much saline with my cisplatin as is normal. Nothing horrible happens, though, and we (along with my parents, who come down to visit) are back to the Cancer Center on Monday and Tuesday.

I spend the rest of the week laying around the house and feeling icky, mostly. Along with my traditional symptoms (insomnia at night from steroids,  fatigue during the days, and a continual feeling of not-quite-nausea), I have two new ones: planter fasciitis in my left foot, and pain in two of my teeth (one of the right of my mouth and one of the left side) whenever I chew. This makes walking and eating more unpleasant than normal, and I am a bit cranky for the rest of the week.

Illinois Marathon! Ebertfest! Philosophy Grad Conference! (Week 2)

OK, so the title of this section is a little misleading. I watch Anne and Kate run the 10K on Saturday morning, I walk by the Ebertfest (for those who don't know, Roger Ebert grew up in CU and hosts a film festival at the Virginia Theater every April) on Saturday and Sunday afternoon, and I am just too damn tired to go to the philosophy graduate conference happening this weekend. And while the week is mostly notable for all the things that I'd rather be doing, it really isn't that bad, all things considered.

When I go in to get bleomycin on Friday, I get to meet with a different oncologist than normal -- a mid-50s-ish, very talkative German American. I tell him about my lower extremity problems (by now, my achilles is acting up as well), and he makes me walk around on my toes and heels, checking for signs of peripheral neuropathy (cisplatin can damage your nervous system, though it's fairly uncommon when it's not given in super-high doses). In 15 minutes, I think he tells me more about testicular cancer than my normal oncologist has in the last three months: (1) how Dr. Einhorn developed the BEP regimen in the late 1970S, (2) what the relapse rate is (around 10% the first year,  5% the second year, and then really low after that), and (3) what sort of long-term side effects I can expect (e.g., bleomycin-induced lung scarring often takes a few months post-chemotherapy to clear up).

After chemotherapy, I go home and sleep for most of the day, then get up on Saturday morning to watch Anne and Kate run by at around 7:30 with a group of friends. (If I remember right, Anne runs a 1:07 and Kate runs 1:10). We eat doughnuts in the morning, then go to the Esquire for a  postrace lunch, and then home for a nap. I take my first bike ride in the afternoon (and even wear a helmet!) and Anne and I have pizza and watch Waiting for Superman in the evening. I actually thought the movie was actually OK, given what I'd heard about it, though the stuff on teacher's unions was a bit over the top.

The rest of the week is a bit of a blur; I'm back at work from Monday through Thursday, but I'm still feeling a bit beat up. My workload is very light: I look at a few ebooks to make sure they match the print books, run some word counts on manuscripts that are about to be transmitted to editorial, and check the accuracy of some simple math in a biomechanics textbook By now, I've taken to kinesiotaping both my plantar fascia and my Achilles tendon, on the grounds that every tendon in my left foot feels like its about to tear. I go for a few short bike rides around the neighborhood (just to be able to keep moving), but don't do too much else.

I Drink Beer, Watch TV, and Call People from MetLife (Week 3)

On Friday, May 4, I get bleomycin, and for some reason can't quite bring myself to tell my fellow chemo ward patients "This is my last dose!" I think I'm afraid that I'll jinx if I say anything out loud, though. The bleomycin session itself goes pretty much as normal (i.e., I'm half asleep through most of it), though I over one of the older patients talking to his wife about his now-terminal diagnosis, and I'm not sure what to say (we've occasionally chatted, though I find that I can't remember his name). We talk a little before I leave, and I wish him good luck, but I wish that there were something kinder and more empathetic I could have said (and the bleomycin-brain fog was certainly not helping).

On Saturday, I go to the hospital in the afternoon for my Neulasta shot and am pleasantly surprised when my insurance picks up the whole tab (apparently, I have now hit my annual $2,600 max, and won't need to pay any more for in-network services). Afterwards, Anne and I go out to Seven Saints for dinner, and I have the "Seven Saints Platter," which is basically a big bruschetta type appetizer, with toasts and pitas accompanied by little bowls of olive tapenade, hummus, and a traditional tomato topping. Afterwards, we go to Boltini so Anne and Kate can have girly drinks. I have my first full beer since chemo started, but it's quite as great as I expected (the beer's some sort of underhopped summer beer, and I'm still a bit nauseous). It feels like a milestone nevertheless.

I feel pretty beat during the week that follows--the tendons in my left foot are still sore, my teeth still hurt, and I feel generally sore and wiped out. My guess is that this is a combination of (1) the cumulative effects of three months of chemotherapy and (2) the Neulasta shot, which has a half-life of well over a day, and which always makes me feel a bit crappy. In any case, I'm glad that I don't have to start cycle 4 at the end of the week (if I'd had a "poor" or "fair" prognosis, instead of a "good" one, I would have been given 4 cycles of BEP instead of only 3).


On Wednesday morning, Anne takes the train to Minnesota, where she'll be hanging out and having fun with her family (and Liz and Joe, too!) until the next Tuesday. I spend the remainder of the week working, biking, and watching the second series of the BBC show Sherlock. Oh, and I also get to call MetLife nearly every day, since I've discovered its just about impossible to get my claim for long-term disability filed. When I fax them paperwork, they lose it; when they fax the hospital, the hospital loses it; when I try to return their calls, no one ever answers, and then they e-mail human resources at HK saying things like "we tried to get a hold of him but couldn't." (As of this moment, I still haven't gotten any money from them, even though I filed my claim on April 2, which is the day I was eligible). It's a bit frustrating, to say the least.

One Week Out

Cycle 3 officially ends on Friday, May 11, and (barring bad test results) I have completed all of the chemotherapy I will need. By Monday, I'm feeling well enough to use elliptical machine at work, and to go for 5-6 miles outside on my bike. (I'd tried on the elliptical machine a few times last week, too, but was not terribly successful in these attempts). Anne gets back from Minnesota on Tuesday night, and we hang out with Kramer (on Wednesday) and Kate and Graham (on Thursday). I'm feeling fairly social, and find that I'm to the point where food (and even beer) have begun to seem appetizing again. 

I'm still coughing a bit, but mostly in the morning and evening; I don't notice that I have any real difficulty breathing. Likewise, my teeth and left foot are still somewhat bothersome, but are nowhere near as annoying as they were during the previous two weeks. I even have some fuzz developing on top of my head, though I still haven't needed to shave (I haven't shaved since chemotherapy started).

A week from today, on Friday, May 25, I will find out the results of the chemotherapy (based on a CT scan on Tuesday and tests of blood markers on Friday morning). As I've written before, there are three possible outcomes, in decreasing order of probability and desirability: (1) complete remission; (2) blood markers are fine but CT scan shows partial remnants of tumor (this would mean major surgery, but would still be more likely to indicate remission than active cancer);or (3) either blood markers are not fine, CT scan shows tumors of increasing size; or both. I don't know what would happen in the third case, but I'd be likely to undergo additional chemotherapy.

(April was not) The Cruelest Month

OK, so I haven't blogged for quite a while, and I thought it was a time for a "Here's what's going on with Brendan"-type post. The (very) short version of the story is as follows: (a) I'm all done with chemo (woo-hoo!) but (b) I won't know if the chemo worked until May 25. I've been a little under the weather (even compared to what's been normal), but I'm looking forward to starting to feel better soon.

In any case, here's the story of cycle 2 (which covers basically the first two-thirds of April). I'll try to get the stuff on cycle 3 up in a few days.

Cycle 1: A Recap

I started my first cycle of chemotherapy on Monday, February 27th. My chemotherapy regimen consisted of bleomycin (B), etoposide (E), and cisplatin (P for "platinum") Each cycle was supposed to last 21 days—5 days on (BEP day 1, then EP days 1-4), 2 days off,1 day on (B only), 6 days off, 1 day on (B only), 6 days of—and then the next cycle was going to start on day 22. It didn’t quite work out the way, which I’ve written a bit about earlier. I made it through the first two weeks fine, but ended up having to wait ten days for the final dose of bleomycin, on account of my white cell counts being super low. In cycles two and three, I received the Neulasta (a longer lasting and much more expensive version of Neupogen, which is what I was given toward the end of cycle 1).

As far as setbacks go, a 10 day delay really wasn’t too bad, and it’s certainly was something I was willing to live with. If I could go back and do it over again, though, I’d be a bit more assertive with my physician (in asking for Neupogen, or in directing him to give my bleomycin even when my white counts were low). Live and learn, I guess. So far as I can tell, tinkering with the dosing regimens on BEP therapy has some effects on its effectiveness, but not overwhelmingly huge ones—for example, studies have found that doing things like deleting bleomycin or stopping after two cycles lowered cure rates by 5-10%. So, while I don’t think the ten day delay was optimal, I don’t think was a disaster, since I’m at least still receiving all the drugs. In any case, my HCG level dropped to 0 by the end of cycle 1, which means that there has been at least partial response to the chemotherapy.

When I started chemotherapy in February, I had two symptoms—sore nipples and a productive cough. The nipple soreness (which was due to elevated HCG levels) went away toward the end of cycle 1, while the coughing has stayed with me, though it has gotten quite a bit better (and for all I know, might be caused by something entirely different than my pre-chemotherapy coughing).  I’m still not quite sure what to think about the cough—it could be caused by active cancer cells, by dead cancer cells, by bleomycin-induced lung scarring, or by some infection (perhaps initially caused by the cancer) that my weakened immune system just  can’t get rid of. Whatever it is, I’ll have to wait for the CT scan to know for sure, and even then they’ll probably have to do a biopsy if they see anything in my lungs. CT scans, unfortunately, can’t tell the difference between dead tumors, live tumors, and certain types of pneumonia.

Cycle 2: Week One

 I start cycle 2 of chemotherapy on Friday, Mar 30th, and ended up going Fri-Tues (instead of Mon-Fri). This requires that I be admitted as an outpatient to the hospital oncology ward for Saturday and Sunday. The ward is small, windowless, and a bit gloomy looking. If you imagine a typical regional hospital ward built in the mid-60s, you’ve probably got the right idea. The nurse who administers chemo is very friendly and talkative, though, and she doesn't even mind when we filled up the ward to capacity with visitors (thanks to Anne S, Anne R, Kate, Graham, Liz, Rachel, and Steve!).

I don’t  accomplish much over the weekend, with the possible exception of watching a lot of college basketball. I’ve entered in two tournament pools and am poised to win money if either Ohio State ($150) or Kansas ($50) win the tournament. Obviously, things don't work out too well for me, and every team I root for loses: Louisville against Kentucky, Ohio State against Kansas, and Kansas against Kentucky. Oh well. Anne and I go to see The Hunger Games on Sunday, which I think was pretty good, though not outstanding. I imagine just about everyone on earth has seen this movie by now, so I’m not sure what else to say about the movie. I didn’t think books two and three quite lived up to the promise of book one, so I’ll be interested to see how those work as movies. Oh, and Jennifer Lawrence (the lead actress) is absolutely phenomenal in Winter’s Bone. So, you should all see that, if you haven’t already.

On Monday and Tuesday, I am back in the Cancer Center in the south clinic. My mom comes to visit for Monday and Tuesday, and we have a good time.  Chemotherapy (which runs Fri-Tues during the first week of each cycle) goes fairly well. On Wednesday, I get my first white-blood-cell-boosting Neulasta shot, which costs  $738 (well, it actually costs five times this much, but my insurance covers 80%). The shots end up doing their job, though, and I don't have to delay chemotherapy again.

I take Wednesday and Thursday off from work, and spend most of my time watching Ken Burn’s Civil War, which I really like. I sometimes find Shelby Foote (a nonacademic historian who features prominently in the series) a bit annoying, though. For example, he likes to say things like “Abraham Lincoln and Nathan Bedford Forrest were the two great geniuses of the Civil War.” Really? I guess Forrest was good at strategy, but so were lots of other people—Grant, Sherman, Lee, and Stonewall Jackson, just to name a few. And Forrest was an absolutely terrible human being, even when judged against his contemporaries—he had a policy of executing black soldiers after they surrendered and helped found the Ku Klux Klan, among other things. I know they still think he’s a hero in Tennessee, but he seems to me like he’s a whole lot closer to Joseph Goebells  than to Erwin Rommel. The postwar U.S. government would have been perfectly justified in having him tried and executed as a war criminal, had they decided to do so. And Shelby Foote doesn’t help things by comparing him to Lincoln. Just sayin.

Cycle 2: Week 2

On Friday, I go in for my bleomycin dose, which is fairly uneventful (basically, I just sit around and then go to sleep--see the next section for more details). I find out that the Neulasta is doing its job, and that I have approximately 10 times as many neutrophils as an ordinary person has (and, therefore, around 500 times as many as I'd had toward the middle of cycle 1, when my white cell counts were in the toilet.)

The rest of the week is really a high point, at least in terms of how I feel. Greg and Laura are in town with their baby boy, Nathan, for the weekend, and we get together with them both Saturday and Sunday. On Saturday, we have lunch at the Esquire; on Sunday, we have Easter lunch with a group of friends at Adriana and Eduardo's house (being the weirdo that I am, I bring Boca spicy chicken patties, and focus my energy on eating the vegan-friendly side dishes, which are all wonderful.)

I go back to work from Mon-Thurs, and think that I am fairly productive, all things considered. Anne and I have a pretty fun week, too. We watch Your Highness with Kramer (which is absolutely terrible), go to eat with Kate and Graham at Dublin O'Neil's with Kate and Graham (which has the best "English-style" fish and chips in town, even if it can't compete with the Seaboat) and go shopping and out to Fazoli's on Wednesday.

The discouraging aspect of this week is that it marks the beginning of an absolutely terrible 2012 baseball season. The Twins lose 4 of their first 6, which turns out to be a pretty accurate prediction for how the succeeding weeks will go (they are currently 8-22, and behind by 5 runs to Toronto at home). The Brewers win 4 of their first 6, but 3 of these wins are against the Cubs, so it's tough to know what to think (they are current 13-18). At this point, I'm still holding out hope. (By the time of this writing, I'm mentally preparing myself for another postseason of rooting for the Cardinals, if for no other reason than that it annoys the Cub fans to no end.)

Cycle 2: Week 3

Just like week 2, week 3 starts on a bleomycin day, which means that it basically consists of the following routine: 

• Check in at 7:00. Sit around for a half hour. 
• Blood test from 7:30-7:35. They leave an IV line dangling from the port in my chest. (On occasion, I've forgotten it was there and have gotten some strange looks in coffee shops...)
• Waste time from 7:35-9:00. I always spend this time having a "second breakfast" in the hospital cafeteria, which is actually pretty good.
• Meet with my oncologist from 9:00-9:15. In these sorts of meetings, we basically just look at my blood counts, which I've learned to interpret fairly well. On this particular day, my white blood cell counts sort of sucks, and we decide I should get a Neulasta shot in the hospital on Saturday.
• Sit around in the chemo area from 9:15-9:45.
• Get hooked up to "pre-meds" at around 9:45. For bleo days, this includes saline, a steroid, Benadryl, and Tylenol.
• The Benadryl always puts me immediately to sleep, and I usually am not fully awake until six hours later.At around 10:30, a nurse pushes bleomycin through a syringe into my IV. This takes around 10 minutes. 
• Go home at 11:00 and sleep until 4:00.

When I get up at 4:00, I help Anne clean the house in preparation for her parents' arrival. (Actually, I might be making up the part about me helping with the cleaning. I mostly remember that cleaning was being done, and that I was awake...)  They arrive around 6:00, and brought us all sorts of goodies from Trader Joe's. We decide to have Seaboat for dinner, which (as I've noted in a previous post) is pretty awesome.

On Saturday, Anne and I get up and go for a run in the rain, and then meet up with her parents. The four of us go to the hospital to get my Neulasta shot administered. Due to a whacky provision in my health insurance (which won't cover the use of the exact same shot when it is provided by the hospital pharmacy), we have to stop at Walgreens along the way to purchase the shot. Everything goes fine, though, and we're in and out in less than 30 minutes.  We have a good time hanging out for the rest of the day, and went downtown to celebrate Anne's birthday. I'm feeling a little queasy in the evening, though, so I have to duck out on Anne's birthday meal at Boltini.

The rest of the week is pretty quiet, at least as far as cancer related-stuff is concerned. While I don't feel absolutely terrible (which I will by next week), I also don't feel nearly as well as I did during week 2. I'm at work Mon-Thurs, though I usually only make it through about half the day before going home. On Wednesday, Anne, Rachel, Kramer, and I go out for Anne's birthday dinner at Red Lobster (courtesy of Grandma Feck); on Thursday (Anne's actual birthday), I stay home while the girls go out dancing until late.
On Friday morning, cycle 3 starts.