WHO HAS TWO THUMBS AND LIKES 6:30PM FRIDAY PHONE CALLS FROM U-M HOSPITAL?!?!

GIVE UP?  I DO!!!!

YOU KNOW WHAT I ENJOY MORE THAN 6:30 PM FRIDAY PHONE CALLS FROM U-M HOSPITAL?  GETTING KICKED IN THE GROIN REPEATEDLY FOR ABOUT FOUR MONTHS!

QUESTION: WHAT TYPE OF LYMPHOMA DOES NICK HAVE?

 

IS IT BURKITT'S?

IS IT B-CELL?

DOES IT MATTER?  HOWARD DEAN SAYS...

HEY CHECK OUT THIS FOOTAGE OF THE U-M PATHOLOGY LAB EXAMINING MY TISSUE THIS WEEK:

YOU KNOW WHAT'S MORE AWESOME THAN BEING DIAGNOSED WITH CANCER?

HOLD ON I'M GOING TO LET YOU FINISH MAKING YOUR LIST OF THINGS THAT ARE MORE AWESOME THAN CANCER?  YOU READY?  OK:

FINDING OUT 10 WEEKS AFTER YOU START TREATMENT THAT YOU ARE PATIENT X FOR SOME WEIRD B-CELL/BURKITT'S HYBRID AND NOBODY IS QUITE SURE HOW TO TREAT IT!  

ROCCO, CAN I GET A REACTION (DON'T CLICK IT IF YOU DON'T LIKE F-BOMBS):

YOU KNOW WHAT THIS CALLS FOR?  FIST PUMPS!

CAN I GET A FIST PUMP FOR A MONTH IN THE HOSPITAL!?!?

CAN I GET A FIST BUMP FOR SPINAL FLUID INJECTIONS?!?!

CAN I GET A "PRAISE JESUS"!?!? HOW ABOUT A "HALLELUJAH GOD IS GOOD"?!?

(crickets...)

(crickets...)

NO?  WELL OK THEN!  WE'LL JUST THROW UP A PICTURE OF MOSE FOR NO $@#$@*$! REASON!

***

Ok.  I'm done with all that now.  I was trying to re-create my train of thoughts from Friday evening, and they were basically what you see above - a jumbled mix of rage, anxiety, apprehension, fear, confusion, you name it. 

So the story: Dr. Li called me yesterday.  U-M pathologists got my tissue earlier this week and did a bunch of testing on it.  Their conclusion: inconclusive.  Dr. Li literally rambled off 4 or 5 tests that the pathologists did and said "this one was indicative of B-Cell, this one was indicative of Burkitt's."

So I'm apparently right on the border of these two types of lymphoma.  Because of this, U-M recommends that I treat the thing as Burkitt's.  The more-scary-than-it-needs-to-be concern:  Burkitt's has a higher chance of getting into the central nervous system, which can cause relapse in the spine or brain.  Now THAT is awesome.  Definitely good for a fist pump or two.

So what does this mean?  I was on the phone with Dr. Li for a long time, so I think I have a pretty good understanding of the situation, and some of my earlier concerns were not realized.  Personally, I was prepared for the worst.  I didn't expect it, but I was prepared for it.  Once you win the cancer lottery, you're an idiot if you start to think "oh, that's the end of the bad stuff."  So I never let myself get to that point.

Anyway, the first issue is treatment:  There are two ways to go here:  One is the "less aggressive" form of treatment, which is really not a huge deal.  It's a few injections into my spinal fluid. Which sounds like a big deal, but...come on, it's all relative.  This really doesn't add to duration, it's not terribly debilitating, it can be done in an outpatient setting, and so on.

The more aggressive form of treatment will require two cycles of an alternative form of chemo.  Both of these cycles will require hospitalization for a yet-to-be-determined amount of time, but probably a not-insignificant amount of time.

The upside:  I have previously called Burkitt's lymphoma a "more serious" form of lymphoma.  That's slightly off-base.  It's actually very curable.  It's just the treatment that is more serious.  And regardless of what type of lymphoma I have, the particular features of my lymphoma (high-grade, high proliferation) make it more susceptible to treatment.

On the same note, my previous concerns that R-CHOP was "off-target" and I might have to "restart chemo" were not borne out.  R-CHOP is an effective but "inadequate" treatment for Burkitt's lymphoma, if that makes sense.  Which means the treatment so far has been effective and the response has been positive, I might just need a little more of something else.  Also, some of the R-CHOP drugs are also used to treat Burkitt's, so I would not need to get infusions of those particular drugs again. 

***

Important point here, which I probably shouldn't have buried, but whatever:  ABSOLUTELY NOTHING HAS BEEN DECIDED AT THIS POINT.  I am far, far away from making any decisions right now.  This is obviously a lot to digest, it's a disappointment, and all the other things you can think of.  But I will be spending all of next week figuring this out.  Dr. Li is going to speak with Dr. Anderson on Monday or Tuesday; I'll speak with both of them shortly thereafter.  I will probably go back to Dr. Al-Katib and get his thoughts on the issue, and I have not ruled out sending my slides to yet a fourth hospital to figure out what the hell is going on.  It might actually be amusing to the medical profession as a whole given that I seem to be harboring mutant lymphoma (which, now that I think about it, supports my original hypothesis that if 436 South Division had given me cancer, it would be a weird one that doctors couldn't identify.  So yeah...436 as the cause is pretty much assured at this point).  

There's a lot more to be done, there are a million ways this thing could go, and I'm not even going to bother sitting here and trying to hypothesize and speculate.  I'll let the doctors talk and come up with ideas, and then I'll figure out who wants to do what and why, and then make a decision about how to proceed.  U-M's "recommendation" at this point is exactly that - a "recommendation."  Henry Ford had the same thoughts and decided to go another way.  I don't think they would have done that if they felt there was a good chance their course of treatment was going to be "inadequate."  So we have a ton of stuff to sort out, and I'll set about dong that next week.

***

Finally, I guess I should provide some idea as to how I feel about all this.  I have very mixed feelings, but I'm honestly handling it 100 times better than I thought I would.  There are several reasons for that.

First, I ALWAYS, ALWAYS prepare myself for the worst.  Logically, there was good reason to expect U-M would change their opinion after examining the tissue.  Practically, in hindsight, there was no way in hell that was going to happen, for this simple reason:  Have you ever known ANYBODY associated with the University of Michigan admit they were wrong about something?  I've been there 7 years.  Never seen it happen, and I'm not even really joking about that.  Also, it's a "second opinion," and second opinion docs have a tendency to issue "cover your bases" recommendations.

Also, the "worst case scenario" - restart chemo - does not seem to be in the picture.  In terms of duration of my treatment, this doesn't change things all that much, especially since U-M appears to be less enthusiastic about radiation treatment.  The most aggressive form of treatment would certainly be more than a mild irritation...but cancer is "more than a mild irritation."  And I'm over that part.  I really am.

And again, I never lose focus of the goal: getting rid of this.  And whatever needs to be done to get that point, to get to a point where I'm done with this and don't have to deal with it again...well, let's do that.  What's the point of kicking and screaming about things?  What's the point of getting all angry about things?  If I do all that, what do I gain?  Absolutely nothing.

I realize the situation.  I realize it's a setback.  I think about the whole thing - not just being diagnosed with cancer, but then this whole situation, finding out 10 weeks in, "Well, gee, we're not quite sure what's going on but here's our best guess and I'm sorry if you thought you were nearing the end, we're just going to knock you back a few steps."  I think about it and all I can think is, "Of course."  Of course this happened.  Why the hell wouldn't it?

Anyway, by now, the time for being angry/upset/disappointed is over.  That never did any good, and it won't do any good now.  It's over.  I gotta figure out what to do with all this over the course of the upcoming week, but there's nothing I can do til Monday or Tuesday, so I'm not gonna worry about it then.  I just worry about the psychological effect this will have on other people - family, friends, etc.  I have no problem with the whole situation - I don't really have a choice.  But I don't think it's cool when other people worry about me.  So, uh...don't worry about me.  Quite literally the worst thing that came out of that phone call was "you might have to be in the hospital for a bit."  And if that's the decision after many more consultations with many other doctors, then so be it.  Again, that's life. 

More to come in the upcoming days.  And to think, I was worried about how I was going to fill this blog with content for the next couple months. Guess these problems have a way of resolving themselves!

Y'all a bunch of jerks

Way to kinda sorta insult me in my own poll on my cancer blog, 54% of voters, by assuming that I wear sweatpants 7 days a week.  Although this is partially my fault because in the interest of keeping the poll simple for my simple readers, I only went with four choices.  And as some people informed me, "I wanted to vote for 6."  So thank you, reasonable people, for insinuating that I only wear sweatpants 6 out of 7 days a week.

But anyway, the jerks are probably right.  I don't even bother with real pants anymore.  I actually wore real pants twice last week - to go to the Michigan game and to go to court - but I pretty much wear sweatpants all the time now.  During treatment, its pragmatic - if you're going to sit in a chair for 6 hours, you better be comfortable.  During doctors appointments, it's also pragmatic - everybody has lymph nodes in their groin, and the docs wanna make sure everything is clear system-wide, so this eliminates the belt/zipper obstruction.

(Funny groin lymph node story:  I hurt my groin playing hockey back in December, and by Winter Break, I was pretty damn sore and had developed a lump (no, 'twas not cancer).  So I got an MRI down at Henry Ford, everything checked out OK structurally, and docs prescribed a couple weeks of rest.  Anyway, fast forward to last month when I met with my Radiation Oncologist, Dr. Kim.  Dr. Kim answered my questions, went over the basics of radiation, and then performed an exam of my lymph nodes.  This includes the groin region, of course, but Dr. Kim seemed to be spending an inordinate amount of time checking the groinal region.  At least, more time than I want 60-year-old Asian men to spend in my pants.  So I asked Dr. Kim, "You lookin for somethin down there?"  To which he responded, "Your chart says you discovered a lump in your left groin, but I can't seem to find it."  To which I explained it was a non-cancer-related sports injury, and party time was over.  Anyway - make sure your medical records are updated, kids!).

So yeah, 7 days wins.  And to celebrate, I give you a video of my typical week:

 

U-M Hospital seemed really interested in me last week but won't give me the time of day this week.  My guess (and hope) is that they got my slides, completed their own pathology report, and took all that to this week's tumor board (which I know is held on Thursday afternoon) and will give me a call today.  I hope that call includes language along the lines of, "We cool."  I'll accept similar sentiments in medical-language form as well.  But the end result should be the same.  My current position is: decidedly not worried.  Dr. Li and Dr. Anderson spoke on Monday, and Dr. Li indicated that U-M would review the slides just as "due diligence," which I appreciate.  But for this to be a problem, two groups of pathologists would have to examine the exact same slides and reach opposite conclusions.  Not impossible, but not likely. 

Oh, current me-related cancer news:  Cycle 5 went just fine, although my hatred for treatment definitely increases after every round. I hate it so much, even thinking about it makes me ill.  Actually there are several things that have that effect on me - it's actually a rather common phenomenon where a cancer patient will begin to associate certain things with cancer or a particularly difficult part of their treatment, and those things will provoke pretty strong adverse reactions.  I might put something together on this for next week.  

The evening of treatment is always difficult, and this one was no different, although no Panchero's reenactments this time.  If I can just make it to bedtime on the night of treatment, I'm fine.  So I tried to make bedtime earlier.  Day 2 is always a little difficult, but I do get progressively better throughout the day as the Prednisone kicks in.  It helps when I'm up, moving, doing something.  The problem is I just feel like laying down most of the time.  So I sorta have to force myself to sit up or walk around a bit.  Laying down does not do wonders for the nausea. 

Oh and this cycle's new "stupid-ass side effect that you didn't even know you could have but that is apparently completely normal during chemo:"  My eyes are sore.  I don't even know how to explain it, but my eyes are actually sore.  Everything on my body is dumb.  I don't think anybody has ever looked forward to radiation as much as I am right now.  At least I get a nice armpit tan instead of sore eyes and numb fingers. 

25 or 6 or 4

[Ed: Inspiration for post title is here.  No I'm not considering 25 cycles of chemo.  That would kill me.]

I had this post about three quarters written, just waiting for U-M to come back with their recommendation and whatnot...and then U-M decided to shoot everything to shit, tell me I might not have the type of lymphoma I thought I had, tell me my treatment might be inadequate, and then not call me for six days.  I'm convinced the Michigan Board of Law Examiners is behind U-M Hospital's patient notification process.

Oh and it also allowed me to write fun paragraphs like this last week:

Here's the deal: doctors have been flexible with my treatment throughout the entire process.  There was some concern early on that I had a particularly serious type of lymphoma that would have required up to 8 cycles of very intense chemotherapy.  This would have been hell on earth.  If there are nine circles of hell, I meander between 1 and 4 or something.  I could have been in 7 or 8.  Yeah, it's hell.  But there are varying degrees.  I'm relatively lucky.

If you wonder why I do everything in my power not to tempt fate - why I take this one day at a time, why I'm reluctant to think about things after treatment, why I once threatened to strangle somebody with my IV tube if she mentioned "scheduling your next two cycles" to me again - this is why.  Within 48 hours of writing "I'm lucky because X is not the case," I find out X may very well be the case.  

Anyway, my original recommended treatment was 4+ cycles of chemo, with or without radiation.  Pretty much, "we'll start chemo, then see where we're at."

When I met with Dr. Al-Katib, he recommended six cycles of chemotherapy.  In part, this is just an institutional difference.  St. John Hospital will treat patients with 3 or 6 cycles of chemo, while Henry Ford does 4 or 8 (for lymphoma).  Of course, those are not firm numbers, and doctors can adjust if needed.  But Dr. Al-Katib's main concern was relapse.  If you look at my PET Scan, you see the glowing areas of activity near my left armpit.  What you don't see are the microscopic cancer cells that probably exist elsewhere in my body, throughout the lymphatic system.  Chemo needs to kill those things.  Radiation can treat the site where my tumors are currently found.  Chemo needs to take care of the off-sites.

So, relapse:  Different cancers have different relapse rates and time frames and whatnot.  Non-Hodgkin's lymphoma is "curable," and doctors have used that term with me, but its not "curable" in the traditional sense.  Even after I am "cured," I will undergo periodic monitoring to make sure the cancer doesn't flare up again.  With some cancers, if you make it a couple years without relapse, you're good to go.  With lymphoma, that's not the case.  Shit can get you a couple decades down the road.

There are three things that can happen here: you can give too much chemo, you can give too little chemo, and you can give just the right amount.  Obviously, you want to give just the right amount.  But nobody knows what that is.  And you don't want to give too much, because that increases toxicity, increases side effects, and increases the chance of long-term issues like infertility and whatnot.  But you really don't want to give too little, because then you increase the chance of relapse.  So how do we know the correct amount?

We don't really.  But we can guess from clinical trials.  CHOP has been a recognized treatment for lymphoma for decades, so there is some decent data on that.  For stage 1 and 2 non-Hodgkin's lymphoma, 3 cycles became the standard treatment, while stage 3 and 4 patients received 8 cycles of CHOP (I'm typing this from memory so I might not be exact, so don't use this as medical advice).

Dr. Al-Katib was concerned that studies with 4 cycles showed very good 5-year success rates...but much poorer 10 and 15-year success rates.  And in those studies, patients suffered off-site relapse, meaning the lymphoma showed up somewhere else besides the original tumor cite. Dr. Anderson responded that those studies did not include a critical variable: Rituxan (same as Rituximab, one is the generic name, one is the trade name.  I'm switching to Rituxan now).

Rituxan was approved by the FDA in 1997 and has been added to the standard lymphoma treatment regimen since then.  And Rituxan is good.  So effective, that it caused several problems with the data.  First, the drug was so good, that nobody wants to be assigned to the "control" group that just gets CHOP, so it's hard to monitor the exact effect of the drug.  Second, since the drug only came into mainstream use at the turn of the decade, there isn't great data on longer-term success rates.  It's impossible to know, for example, the difference in 20-year relapse rates between stage 1 or 2 lymphoma patients who underwent 4 vs 6 cycles of R-CHOP.

So there is pretty good data on CHOP, and pretty good data on 3, 4, 6, and 8 cycles (for some reason, there is virtually no data on the effectiveness of 5 or 7 cycles.  I have no idea why.  Dr. Anderson says "because they are not round numbers."  But that answers the question, "Why not 5?").  But we don't really have good data on how Ritxuan will change the game.  It's a good drug.  But we don't know exactly how good. 

So lymphoma presents a number of unique problems that complicate this issue: new drug, many different types of lymphoma, four stages, long-term relapse potential, etc.  But all things considered, I was leaning toward six cycles for a while, and decided to go with six.  Why?

There were three main reasons that Dr. Anderson recommended six cycles: 1) My PET Scan showed a significant reduction in activity, but not a complete reduction.  Had the PET Scan indicated no activity, the case for four cycles would have been much stronger.  2) There was some evidence of CHOP studies that showed that 6 cycles was more effective than 3 or 4 for stage 1 or 2 lymphoma patients.  On the other hand, CHOP is not R-CHOP, and I am on what's called "dose dense" treatments, which only means I get chemo every two weeks instead of the standard 3 (Dr. Li referred to this as the "European" method of treatment, which sort of freaked me out, but she only meant that it was a more aggressive form of treatment).  This is tougher on the patient, but there is evidence to suggest it is more effective, particularly with high-grade, high-proliferation index lymphomas.  Anyway, you could look at this fact two ways: 1) That since CHOP studies show that six cycles were more effective, go with six, or 2) that four cycles of dose-dense R-CHOP should be just as effective as six cycles of regular CHOP.  2) is an entirely reasonable hypothesis...but it hasn't been tested. 

The third reason Dr. Anderson recommended six cycles was because he felt there was minimal risk.  Part of that is because studies have shown up to eight cycles of chemo to be relatively safe, and the risk of going from four cycles to six is not significant. 

As for the risks, what are they?  Three major ones (lot of numbered lists today):  1) Cardiac toxicity, 2) Bone marrow toxicity, and 3) Neuropathy (numbness, tingling, etc).  These are a little bit more of a concern when you are dealing with a younger patient because in theory, I have a lot of years left, so you worry more about causing problems down the road.  But you also worry about relapse.  So six cycles seemed to split the difference between minimizing toxicity and minimizing the chance of relapse.  (By the way, the percentage chances we're talking about with the toxicity issues are in the low single digits.  Obviously not negligible, but not significant either.  At least with the doses I'm receiving). 

So that's basically why I decided to go with six cycles.  Yes, cycles 5 and 6 should be more difficult, and yes I've said that about cycles 1-4 and that has failed to materialize.  I'm not sure how much all this matters if U-M continues with their Burkitt's fetish, but I'll just deal with that if and when I have to.  But I thought the entire decision-making process was rather interesting, so this is it. 

5 down

Very uneventful cycle 5 today.  Very blah.  I tried to sleep through most of the morning, with little success.  Chemo is very redundant.  I'm bored with it already.  Bullets about today:

• Two things I won't miss about this whole experience:  the tape-induced post-chemo arm hair tear-off and driving across town during rush hour all the time.  Also, the lights on Michigan Avenue from 94 to Henry Ford Fairlane are the worst timed lights in the universe.  It's absurd.  I can't get over it.  
• I forgot my headphones today and I decided to go sans visitors, since I wanted to try to sleep through most of this....but this led to me overhearing other conversations in the treatment room.  As a result, I' listened to about an hour of banter about diarrhea and a rash.  I'm going to bring my headphones next time. 
• So those Oakland County medical marijuana raids I mentioned a while back....the cops used fake patient ID's to buy pot.  The lawyers for the defendants claim their clients were entrapped.  I don't know how this will all play out - yes, cops can lie during investigations, but actually forging documents might be an issue - but the point is this:  If cops have no problem breaking the law to catch other people breaking the law, it certainly says a lot about the severity of the offense, doesn't it?  Cops don't steal cars to catch auto thieves.  They don't kill people to catch murderers.  They don't break into your house (well they do break into houses all the time but that's another story) to catch burglars. But when it comes to things like buying drugs and soliciting prostitutes, cops have no problem breaking the law.  If you or I did it: jail.  Cops do it: no big deal.  Awesome setup. 
• Also, if I ever catch myself speaking like every prosecutor that has ever been quoted in a news article, I'm going to savagely beat the hell out of myself, cancer or no cancer. Also, may I never use the phrase "complete and thorough investigation." 
• Since I'm at home a lot and I catch way more TV than I have in the past couple years, I see a lot of election ads.  They're all pretty terrible.  But I've seen so many of these things  in my already-ornery state, that I'm now thinking of voting for candidates based on whose ads irritate me the least.  I don't think this is a cop-out voting strategy, because I despise Republicans and Democrats equally, and I see no real difference between the two major parties (in substance).  Maybe I'll do a post on this. 
• Feeling very "blah" post-treatment today.  Mostly tired and groggy.  Nausea really hasn't been an issue, which is good.  But I can tell I've been through 5 of these things.  The upside is I'll probably get to sleep before any of the nausea kicks in. 
• Also, no contact with U-M today, which was fine since I wouldn't want to be discussing things during or just after treatment.  I'll probably get in touch with them tomorrow or Friday if they don't give me a call first.  I told them to call me if they had any problems obtaining my pathology slides, so I assume the absence of a call means they got a hold of them and are examining them now.  

All for now.  More stuff sometime soon.  

Fifth Quarter

Sometimes I write posts piece by piece.  Add a thought here and there.  Write down a note or two so I don't forget something that I wanted to say.  And by the end of cycle 4, you're running out of profound things to say about the whole experience.  The novelty of the whole thing - and yes, there is a perverse sort of "novelty" to the cancer experience - wears off and you're left with a daily grand that gets pretty irritating by week 8. 

Five days ago,  this post was going to be about how much I was dreading cycle 5.  Not because I thought it would be difficult - cycle 4 went very well, and you could make the argument that each cycle has been easier than the previous cycle, which, I'm told, is pretty absurd given my treatment regimen.  But because I just don't want to do this shit again.  Even if a cycle goes "well," I'm nowhere near 100%.  And I haven't been since July.  It's been three months since I felt well.  That's a long time. 

But then I went up to Michigan to figure out the best way to finish up my treatment, and three days later I had a potential disaster on my hands.  I guess this added some excitement to cycle 4.  But was not the way I wanted excitement added. 

But there is an upside to all this (provided I don't have to restart chemo, of course):  I'm thrilled to be going through treatment today.  This entire thing is about perspective.  I was diagnosed with lymphoma, and I was pissed off.  I was scared.  I didn't know exactly what the deal was, but I knew it wasn't good.  And then I found out the prognosis was pretty good, I dodged some bullets early on, and I was fine.  And then you become comfortable enough with where you are and what you're going through, and you start plugging along. 

Because no matter where you're at, there are some people who have it much, much worse.  That's hard to fathom when you're not in my position - I think the general impulse is to think that I'm in a pretty terrible place.  Which is somewhat true.  But I can still look at other people and think of how fortunate I still am.  Again, it's all relative.

But then the Michigan thing happened, and I didn't know anymore.  I was never at a point where I was seriously concerned about the whole thing.  In part because of the reasons I mentioned in my previous post, and in part because there was nothing I could really do about things.  I could hypothesize all day and play the "What if?" game until I passed out.  But that's about as fun as the "Why me?" game, and will produce the same number of useful answers: zero. 

By the time I had a reassuring conversation with Dr. Anderson on Tuesday afternoon, I realized I had gone five days without even thinking about how I was feeling, the little nagging side effects I have to deal with, nausea, bone pain, my hair, or any of that stuff.  I thought a little bit about the "worst case scenario," but really...what could I do about the whole thing?  The one thing the U-M situation did for me: it reminded me that things could still be much worse.  Maybe they still will be.  But I'll just deal with that if and when the time comes.  And even if that is the case, there will eventually be a point where I'm looking back on all this and saying, "it still could have been worse." 

There was a point during Burkitts-gate when all I wanted to do was finish my treatment.  When faced with the alternate universe of inpatient chemotherapy and phrases like "tap into your spine," R-CHOP sounded just awesome.  I was BEGGING for cycles 5 and 6.  At that point, I wanted nothing else than to go through two more cycles of chemotherapy followed by a month or so of radiation.  It's amazing.  But perspective is everything. 

So now that it looks like I'm going to be able to do that, I'm thrilled.  The whole U-M thing was a really perverse shot in the arm.  For five days I didn't think about any of my symptoms, and now it's the eve of cycle 5, I feel great, I've felt pretty good the overwhelming majority of the past two weeks, and in two more weeks I'll be sitting through the (hopefully) last chemo treatment of my life.  That's a terrible position to be in if you're you. But me, I'm excited for it. 

I don't know if I'll blog today during treatment.  Maybe if I'm bored or have interesting things to say.  I do not get the Ritxuan on "rapid infusion" out in Dearborn.  I'm not even sure what that means but I deduce that it means the Rituxan is rapidly infused into my body.  That slows things down a bit.  But we'll see if I'm feeling up to it. 

Situation reduced to "slightly less (potentially) terrible"

We're down to DEFCON 4.  From 3. With DEFCON 1 the most serious.  Reagan approves.

Spoke with Dr. Anderson this afternoon, and he seems very unconcerned about the entire situation.  Actually, he never seems concerned about anything.  Which is a good character trait for an Oncologist, I guess, but it makes it hard to know if and when I should hit the panic button. 

Dr. Anderson's take:  Early on, Henry Ford thought I had Burkitt's lymphoma and was fully prepared to treat me with the more intense chemotherapy regimen.  They then looked at more of my tissue and performed a series of genetic tests that convinced them otherwise.  The Henry Ford tumor board ruled out Burkitt's after these tests were conducted.  He expects U-M will do the same.  He said he would be "surprised" if U-M came out with a different recommendation after looking at the slides, but he's been surprised before.  So: possible, not likely. 

The one question I (and many others) had was:  If R-CHOP seems to be working, how is it inadequate?  Dr. Anderson explained that R-CHOP is *a* treatment for Burkitt's lymphoma.  It's not the one that Henry Ford or U-M use - they would both use more intense treatments - but it's not completely off-base, and it will have some effect.  So even if U-M came back with a different recommendation, his thought would be to just finish the 6 cycles of R-CHOP, go through radiation, and figure out what to do then. 

So it looks this is the case:  My lymphoma is sneaky and kinda sorta looks like Burkitt's until you run more tests on it and look at the slides. Everybody (Dr. Anderson, Dr. Al-Katib, and Dr. Li) all had the same initial impression.  But after looking at the slides or talking to somebody who was familiar with all the pathology work, Burkitt's was ruled out.  Dr. Li just happened to get in touch with me at a bad time - after discussing the pathology report with the tumor board, but before actually looking at the slides.  And then the entire issue was compounded by the fact that U-M had the wrong slides (bone marrow, not tumor). 

So that's that.  I'm going forward with treatment tomorrow.  I don't know if I'm totally out of the woods at the moment, but I expect I will be soon.  There is always chance U-M could come back with a different conclusion, but I guess I'll just cross that bridge if and when I come to it. 

Things just got terrible (potentially)

I have not yet hit the button, but I have removed the protective cover

One of the things I considered when I started this blog was: What if something goes wrong?

That's not a negligible concern when you're writing a cancer blog.  I decided before I even started this thing that if I did start a website, it wouldn't be a normal "cancer blog."  I just couldn't do that.  I enjoy writing and I have too many thoughts for many of them not to seep out into this space.  So I anticipated having a unique cancer blog.  I didn't quite anticipate this sort of response and this sort of crowd, but I anticipated having a decent following.  And things are all wonderful when things are going well.  But what if something goes wrong, or I get bad news, or I'm not responding to treatment?  What do I do then.

Well...I think I'll just deal with it the same way.  As Rudyard Kipling wrote, "If you can meet with triumph and disaster; and treat those two impostors just the same." 

Anyway, there is potentially bad news, there are my thoughts on the potentially bad news, and then there are many reasons why I think the bad news will become an issue. I'll explain each in turn.

First, the potentially bad news:  Doctors at U-M "suspect" that I have Burkitt's Lymphoma, and not B-Cell lymphoma.  Consequently, this means that my treatment so far would have been off-target and "inadequate."  This would mean that I would need to essentially restart chemotherapy, with a different and significantly more intense treatment regimen, and that would continue for an indefinite period of time.

This is precisely as terrible as it sounds, and I have a couple thoughts on the issue, all assuming this comes to fruition:

1)  I hope this takes the "you have such a positive attitude" meme, ties it to cinderblocks, and tosses it in the lake.  I do not have a "positive" attitude.  My official attitude on cancer is, and pardon my French:  "This is fucking terrible, but there's no sense in crying about it."  That means, in essence, this is a really bad thing, but I will handle it with toughness, humor, candor, and keep my complaining to a minimum, because nobody wants to hear that crap.  But my attitude is most decidedly not "positive."  People mention my "positive" attitude all the time, and I know they don't really mean it that way and I don't get upset - it's just a matter of semantics - but I wanted to draw the distinction. 

When Dr. Li called me to give me the above news, there was nothing positive about it.  There was no "praise Jesus."  There was no "oh this is a good thing."  There was no positive spin.  It was unequivocally horrible, like many things associated with cancer.  There's no getting around that.  But just because I'm not bawling in the fetal position does not mean that my attitude is positive. 

2)  Ergo, when I received the above news, I was angry.  Being diagnosed with lymphoma in the first place, fine.  I'm in a very small minority there, especially at my age, but it happens.  I now know of many others who have been through this, and it sucks, but it happens.  That's life.  Nothing fair about it.

But this is a new category.  This takes me from the 1% and puts me in the 1% of the 1%.  Going through two and a half months of treatment and then finding out that your treatment may be "inadequate."  What the hell is that?  How many times have I written about being able to handle this because I knew everything had a purpose and a meaning?  You know how much fun it was to find out that everything I've done so far might have been meaningless?

The worst part was this came two weeks after I found out that my treatment was progressing on track.  At that point, the end was in sight.  I was finally able to think about moving to DC.  Emily and I actually went so far as to put a deposit down on a place last Wednesday.  And on Friday, this happens.  Not even sure what to think at this point. 

3) Timing continues to play an absurd role in all this.  This was all dumped on me around 5pm on Friday.  You fire people at 5pm on a Friday so they don't come back and shoot up the place the next day.  You don't tell cancer patients, "Gee, your treatment might be all wrong and we'll have to start over.  But we need to talk to your doctor and look at your tissue.  Which we can't do until next week.  So have a good weekend!" at 5pm on a Friday.

I didn't mention anything around here because there is nothing anybody can do until these issues get sorted out, and that won't happen until this week.  There was no sense in letting people who care freak out about this for an extra couple days.  Who do you think I am?  The Michigan Board of Law Examiners? 

4)  All that said, this is the point of a second opinion: to make sure things are being done right.  U-M is undoubtedly doing a thorough job, and I wouldn't expect them to do anything else.  When this is all sorted out, no matter which way the cards come out, I will be confident that things are being done the right way. 

So that's the potentially bad news, and those are my thoughts on the potentially bad news.  Here's why I don't think any of this will matter:

The main reason I don't think this is soul-crushing news is that Dr. Li didn't tell me anything that I didn't already know.  Everything she said was stuff that had been found by the people at Henry Ford, considered by doctors and pathologists, and discussed by Henry Ford's tumor board.  In fact, doctors at Henry Ford originally thought I had Burkitt's lymphoma.  After additional testing and various discussions, they decided that that was not the case, and I should be treated with R-CHOP.

The things that concern docs at U-M: The proliferation index (the percentage of cancer cells that are actively dividing and reproducing) is high (mine is 100%), my lymphoma has something called an 8;14 translocation, and some third thing that I can't remember at the moment.  These things are more common in Burkitt's lymphoma.  But they are apparently present in a certain percentage of B-Cell lymphomas.  In looking at the pathology report, there are a number of things that seem to indicate Burkitt's lymphoma.

Which makes looking at the actual biopsy slides even more important.  But U-M has yet to do that because apparently I did not give them the biopsy slides.  I requested that all my slides be sent to Dr. Al-Katib back in August and I thought this happened, but apparently, only my bone marrow biopsy slides were sent.  I found all of this out on Friday.  This angered me even more.  I'm a relatively smart guy, but I can't tell the difference between bone marrow and tumor biopsy slides.

The final reason that I'm not very concerned about this is because Henry Ford did a ton of testing on a ton of tissue with the explicit knowledge that I might have Burkitt's lymphoma.  When my doctor called me with the diagnosis on July 30th, he mentioned that pathologists couldn't conclusively determine if I had B-Cell or Burkitt's.  So they took out the whole tumor which provided them ample tissue to test.  And the final pathology report took a little over a week to come back (from what I'm told, that's an unusually long time frame).

In short, Henry Ford explicitly considered everything that U-M is now considering, but they had the benefit of actually looking at my cells and running any test they wanted, and they decided I had B-Cell lymphoma and should be treated with R-CHOP.  And that treatment seems to be working.

There are really only two ways I could see this becoming a problem:  One, if Henry Ford made an error, and I just don't see that being the case.  Two, U-M and Henry Ford have institutional differences in terms of classification and treatment.  This is somewhat more likely - for example, U-M's standard treatment is 3 cycles while Henry Ford does 4.  But if it really is the case that my current treatment is "not adequate" (U-M's term, not mine) for my type of lymphoma, then I find it hard to believe that Henry Ford has an institutional policy of providing "inadequate" treatment. 

The most likely outcome, in my mind: Dr. Li talks to Dr. Anderson, U-M pathologists look at my tissue, issues are resolved, we declare "crisis averted," an U-M gives me a recommendation on the rest of my treatment which is the reason I went there in the first place.

But regardless of the way this works out, there won't be any doubt in my mind that I have seen some of the best doctors in this state (and perhaps the country), and that my treatment has been handled the right way.  At the moment at least, I can't say enough good things about all the doctors I've met with so far.  Even Dr. Li and U-M, who kinda sorta rained on my parade this week, have been extremely responsive and kept in touch with me throughout this process.  When you're in this situation, that's all you can really ask for.

More to come as the Greek Tissue Crisis works itself out. 

A good guy blogs about a good guy who gets sick

You all know that I try to avoid being Mitch Albom any time I write.  But if there is any writer I do try to emulate, it is Radley Balko.

Radley is a Senior Editor with Reason Magazine, a former policy analyst with the Cato Institute, and current proprietor of The Agitator.  He is the national writer whose political philosophy most closely matches my own.  If you want to know a little bit more about how people like me manage to be so irritated all the time, no matter who is in the White House and no matter which party controls Congress, follow Radley's blog.  Even if you disagree with his politics, you'll get an interesting take on things that you might not have considered before.

Anyway, Radley wrote a piece on me last November for Reason about my work with the Michigan Innocence Clinic and the events that led me to join the Clinic.  Of course I think it was well done, but I am biased.  Go read for yourselves.  But Radley recently mentioned my current situation on The Agitator and Reason's Hit & Run blog.  So to those of you that made it here because of Radley, welcome, and feel free to hang around for the ride or pass this blog along to others, especially people who have to deal with something like this.  And to Radley, who singlehandedly shattered my daily visitor record (on a Sunday, no less), thank you for the kind words. 

Ironically, I was planning to mention Radley in this space this week because he dropped a post last week that summed up my views on politics as well as I ever could.  Excerpts:

Politics is a ridiculous profession populated by ridiculous people. Maybe if we elect increasingly clownish candidates, the public will eventually come to realize this, and finally realize that it’s probably not a good idea to put larger and larger portions of our lives and livelihoods in the hands of people who have achieved success in a field that rewards character traits you spend your entire tenure as a parent trying to teach out of your kids...

...I see no reason to instinctively cheer for Republicans over Democrats. Or vice versa. At least electing transparently crazy people will make us more cautious about how they use their power...

...Me, I’m cheering for elections to matter less, and for politicians to have less impact on my life. I dream of waking up to find the results of the November 2 election on page A-10 of my November 3rd newspaper—because no one cared, because very little was at stake, because we stopped pinning our hopes and dreams on the results of a perverse process dominated by generally horrible people who have made a career of accumulating power for the sake of accumulating power.

A lot of you know how I am.  I've mentioned the words "crotchety" and "old-manish" to describe myself (and only because others used them to describe me) here before.  Well the cancer has exacerbated that.  I hate bullshit.  It's why I keep ranting about Mitch Albom and why I have a running series entitled "Things That Always Made Me Angry Make Me More Angry Now That I Have Cancer."  Cancer makes you realize, very quickly, how short life can be.  So why fill it with bullshit? 

And I will tell you this:  To somebody that has had more contact with the health care industry than he ever wanted to by age 25, it absolutely TERRIFIES me that more and more power over that industry will be placed in the hands of these ridiculous people.  The issue is not whether they will do good things or do bad things, or whether it's a good law or a bad law; it's the mere fact that yes, we are putting "larger and larger portions of our lives and livelihoods in the hands of people who have achieved success in a field that rewards character traits you spend your entire tenure as a parent trying to teach out of your kids."  I'm not really interested in debating "The Health Care Bill" as much as I am debating how much power over my life I want these ridiculous people to have.  This really does scare and affect me in a very real way.  (I have a much longer post on this issue coming up, since I've been asked the question several times, so save your bullets).

Anyway, welcome to those of you who found this site by way of Hit & Run or The Agitator.  If you haven't noticed already, this isn't your average "cancer blog."  But because so many people have had to deal with this terrible disease - either personally or through a family member or close friend - my thoughts seem to resonate with people. The site will continue to be this way for the foreseeable future.  You guys are welcome to come along for the ride. 

No more hot dogs

A lot of people ask me if I've ever "played the cancer card."  I don't really.  Most people play it for me.  For example, you're not going to call me and ask me to help you move furniture.  People make the "let me know if there's anything I can do" offer, and I think more than half of them actually mean it.  I really don't "need" anything, so I don't accept most of those offers (with the exception of The Coatneys), but the thought really does count.

For the record, I do have a cancer card.  Here it is:

Why do I have this?  I have no clue.  I was bored one night and thought it would be funny to make an actual "cancer card."  I have a lot of time on my hands.  They serve a pragmatic purpose too:  I give them to people who want to visit my website but can't remember how to spell my name, or I give them to my grandparents to give to their friends who lodge complaints like "I can't get your website."  Just trying to get information to the people.  I have yet to hand it to somebody who asks me to do something that I don't want to do, but I'm sure that will happen soon enough. 

I don't like using the cancer card though.  I thought about it early on, but as time went on, I decided there were still a lot of people worse off than me who deserved things more than I did.  I just don't feel right playing the card.  People have been nice enough for the past couple months.  I don't really need much more than that.

But that doesn't mean I won't accept nice things because of my condition.  My affinity for Michigan Football is no secret.  And I still enjoy going up to Ann Arbor for games when I'm feeling up to it.  But actually going to the games is not a great idea for me at this point.  The whole combination - the sun, being outside, crowds, standing for three hours - presents hydration, fatigue, and immune system issues.

So when I announced I was going to the MSU game last weekend - four days after treatment - my mother was concerned.  I assume mothers who have children with cancer are perpetually concerned, so that's not a shock.  (Side story: I think sometimes my mom thinks, "I'm talking to Nick.  He has cancer.  I have to say SOMETHING mom-like to him."  So I called her after the game Saturday night.  At the end of the call, my mom ordered me to "make sure my food was cooked properly."  If we had been going to a restaurant that evening, this would have been awkward as I would have had to stand in the kitchen with the cooks to observe their food preparation techniques.  As it was, I just had to supervise increasingly famished newlyweds argue about cheese.  And as if the first order was not enough, my mom added a second order: "No more hot dogs."  Which, huh?  One, she was at home all day, and had no idea what I had been eating.  Yes, it included several hot dogs.  But she didn't know that.  Two, is there some link between hot dogs and cancer of which I'm not aware?  Is Dr. Anderson going to walk into the room next week and declare, "We have isolated the cause of your lymphoma:  Hot dogs."?  So I went to Kroger, saw some chefs preparing sushi, and decided that sushi satisfied both tests since 1) I could observe them prepare the food and 2) They weren't preparing hot dogs.  So I photographed the sushi, sent my mom the pic, and told her that's what I would be having for dinner.  Raw fish). 

But anyway, in a vain attempt to keep me from getting caught up in the moment last week, purchasing a ticket, and then attempting to go to the MSU-Michigan game four days after treatment, she e-mailed the U-M athletic department to see if they had any tickets available in the new indoor seating areas. 

They did not.  But the good people with the Athletic Department e-mailed her last week and asked if we wanted to watch the Iowa game from Athletic Director Dave Brandon's suite.  I wouldn't have turned down this opportunity regardless of my cancer status, but I probably wouldn't have been offered the opportunity without the cancer.  Regardless, it was about as awesome as you would expect: 

 

And an entertaining, even if terribly frustrating game to boot.  A highlight: Dave Brandon turning to former U-M linebacker (and current Cincinnati Bengal) Dhani Jones after an Iowa TD and asking, "Can you still play?"  

Also, the visit to the AD's suite inspired me...to get something on that campus named after me some day.  I don't really care what it is.  I have always wanted "The University of Michigan Law School Presented by Nick Cheolas," but I'm not sure MLaw would go for it.  But I'm up for anything at this point.  Maybe a tower or something.  

AS FOR THE GAME:  I'm probably not going to write much more on this topic until Michigan shows us something we don't already know or I come up with something new to say.  The offense put up 530 yards against a top-ranked defense.  Our defense is my white blood cells on a football field.  Our special teams are very special.  If the Iowa game had any impact on your view of this team, you were missing something before. 

MITCH REMAINS SPECIAL:  I think the same rules should apply to Mitch Albom, but I never seem to run out of stuff to say about him, and he brings the spectacularly stupid week after week.  I'll be short this week, as Mitch rips on gubernatorial candidate Rick Snyder for threatening to kill the tax incentives for the film industry in Michigan.  The fourth paragraph reads like this:

I was involved in bringing these tax incentives to our state. I helped with their creation, testified before the Legislature, met numerous times with the governor and her staff, and shared -- with other Michigan-connected artists -- our frustrating experiences in convincing studios to make films or TV shows here and employ Michiganders, only to be told the work was going elsewhere -- to states with incentives.

That sound you heard is Albom's credibility on this issue going down the toilet.  Other related issues: Why in the name of Paris Hilton is Mitch Albom allowed to play an integral role in doling out millions in state tax dollars?  Doesn't this say everything we need to know about the Granholm administration?  The rest of the column isn't really important, and just shows that if you give people enough money to do something, they will probably do it.  It's thoroughly uninspiring. 

A STORY:  Much of my political philosophy is influenced by little stories like this.  The background: My cousin, Kelly, and her fiance, Jeff, stopped by my house on Sunday to say hello.  They manage a bar in Detroit - Honest John's - near the Wayne State University campus.  I asked them about the smoking ban, which went into effect this past May.  They said it hadn't had much of an effect on the bar except on the outside patio.  Apparently, state law prohibits smoking where there is "food service," (which is why smoking isn't allowed on the outdoor patio at Charley's in Ann Arbor).  So to comply, Honest John's allows people to order food up at the bar, sit outside, and pick up the food when it's ready.  That way there is no "food service," and people can eat and smoke outside.  

To keep things tidy, they put ashtrays on the outdoor tables.  No good, said the Health Department - that "promotes" smoking.  No ashtrays allowed.  So they put an ashtray container outside.  No good, said the Health Department - that "promotes" smoking.  So now everybody tosses their cigarette butts on the ground.  And one time they had a trash can fire.  Law compliance: achieved.  

There is a significant difference between the theoretical aim of a law and the way that law actually works on the ground.  So when I hear things like, "This law would help poor handicapped minority immigrant disadvantaged senior working families get health care, education, jobs, and puppies," I think of the time the state tried to protect waiters and ended up mandating litter.

THE WHOLE 4-CYCLE VS. 6-CYCLE BIT:  Is all FUBAR right now.  I'm planning on getting treatment this week.  Everybody - myself, Dr. Anderson, Dr. Al-Katib - thinks 6 cycles is the right way to go.  U-M is being all difficult right now, and I'll explain more about that in a post later on today.  There's quite a bit of interesting stuff that went into this decision, which I will cover in a separate post, hopefully once the U-M issues get ironed out.