This…just…I don’t…you mean….really?

They took a picture of my cancer treatment.

Around 8:30am on Thursday, my 33-day quest to see a doctor at Johns Hopkins finally ended, as I was given actual appointment times with actual people in actual departments at the Sidney Kimmel Cancer Center.   Of course, those appointments begin at 7:50am.  But whatever.  I am meeting with a personally-recommended doctor at a top cancer center and getting scanned all on a Friday morning.  The whole thing worked out just about as well as could have been expected.

But if you’ve been a reader around here for long enough, you know the rule of Nick when it comes to cancer treatment:  Every bit of good news must be met with an equal and opposite bit of bad news.  The cool (horrible?) thing has been that each new bit of bad news is more interesting/outrageous than the last.  So I guess I should have seen this one coming, but I didn’t.  Guess I’ve been out of the game for too long.

You ready for this?  Good.

So I spent some time on Thursday notifying my team of doctors that I would be getting scanned and meeting with Dr. Ambinder on Friday.  While I wanted to do the scan out here, I was open to making a trip back to Michigan to meet with Dr. Anderson and get his thoughts on the whole deal.  So I e-mailed Dr. Anderson’s nurse coordinator, Joyce, to see if Dr. Anderson felt it was useful to meet with me in person, or if we could just handle things over the phone.  Simple enough.  I did not expect this in response:

From:  Desjardins, Joyce 
Thu, Mar 3, 2011 at 1:50 PM

To: Nick Cheolas <ncheolas@gmail.com>

Hi-  I'm sorry to tell you that Dr Anderson resigned on 2/18.

Uh…

 

When I got the “you have cancer” call from Dr. Houin back in July, I sort of expected that.  I knew there was a massive lump under my left arm, I knew what massive lumps could mean, and I had prepared myself for the possibility.

This…I did not see this coming.  I stared at the e-mail for a while.  I didn’t really believe it at first.  I looked at the word “resigned” and thought about what it meant:  Did he take a new position?  Was he fired?  Did he just quit?  Did he get a better offer somewhere else?  What the hell just happened?  Did something happen to him?  His kids?  I had no clue.  If you think about it, I saw Dr. Anderson once a week for four of the most difficult months of my entire life.  You build a unique relationship with that person.  No matter what other doctor I consulted, Dr. Anderson was always there to add his perspective, discuss the case, defend his position, explain things, and so on. 

And now this.  Now, I’ve learned to get to know the Coordinators at these cancer clinics, and I know Joyce, so I gave her a call.  The rest of her e-mail mentioned that other doctors were covering Dr. Anderson’s cases, and they could meet with me or speak to me by phone if needed.  I figured, at the very least, I would figure out what was going on and go from there.  If Dr. Anderson was at another hospital, I’d just contact him there.  That seemed like the most likely outcome for a guy in his mid 50s who had been practicing medicine for 30 years.

I called Joyce.  Left a message.  She called me back.  And asked me, “So…are you as shocked as we are?”

***

Nobody has any clue what happened to Dr. Anderson.  Everything was normal and he was in the clinic treating patients until February 18th.  On Monday, everyone else showed up, and he was gone.  Apparently people soon found out that Dr. Anderson had resigned over the weekend.  Without any warning.  Without any information.  Just vanished. 

I talked to Joyce for a while, then asked her at the end, “I know you might not be able to say much, but do you have any idea…”  She cut me off.  “None,” she said.  No idea why.  No idea where he went.  No idea what he’s doing now.  Nothing to offer any of his patients.  She had been scrambling for two weeks to straighten everything out and get patients hooked up with new doctors. 

My dad called one of his friends who works at Henry Ford.  He knew Dr. Anderson.  Had no idea he was gone.  Checked the directory only to find his name wasn’t on the list. 

So just like that, he was gone. 

***

In the past few hours, I’ve had about a billion different thoughts on this situation.

1. I hope he’s alright.  I really liked, respected, and trusted Dr. Anderson and I still do.  There was never a point at which I felt he didn’t know what he was talking about.  Never a point at which I felt he was giving anything less than his best effort.  If he was an eccentric, flakey but brilliant guy, then maybe I could see something like this happening.  He wasn’t.  He’s not a guy who would abandon his patients.  Of course, I’m just going off of what one person said, and maybe I misinterpreted things…but it’s somebody who would know things, and I don’t think I misinterpreted direct quotes. 
2. I have no real worry that his resignation was because of some reason that could affect me, but I guess its a possibility.  I just don’t think he seemed like the kind of guy who we will find out got his medical degree from Tito’s Medical School in Tijuana.  Even then, he seemed damn smart.  I think I’d still trust him. 
3. Shit I’m glad this happened on March 3rd and not October 3rd.
4. If anybody is able to handle their primary oncologist vanishing into thin air, it’s me.  THIS IS WHY YOU HAVE 5 DOCTORS!
5. I’m thinking of holding a televised series entitled “Nick’s Next Top Doc” to choose my next primary.  Doctors will compete in a series of increasingly inane challenges – mostly physical – to see who gets to treat me from now on.  I think there’s potential there. 
6. Of course my doctor would just quit practicing medicine two months after treating me when he’s been practicing for three decades.  Haven’t I been paying attention to things since July?
7. Seriously though:  What the hell happened?

And probably a few others that I didn’t list.  All things considered, I’m fine with things.  This won’t have a huge impact on me, and I have more than enough doctors to figure things out.  But it’s still just one more off'-the-wall episode in this never-ending absurd epic tragedy.  I really do feel like I’ve had a crutch knocked out from under me. 

***

So how does this change things going forward?  I have no clue.  I’m leaning toward declaring Dr. Ambinder my “primary oncologist,” just because I would prefer my primary be close to me out in DC.  For this reason, I’m really glad I got my tissue out to JHMI and had them do the whole workup on my case.  And I’m really glad I found this out today as opposed to Monday.  At least I know the situation before I see the doc. 

The rest of things…I’ll just figure them out as I go along.  I don’t know what Dr. Zelenetz is going to say, and I don’t know what Dr. Ambinder is going to say.  Without that, I cannot and will not speculate.  Not worth it.  I’ll get things sorted out soon enough.

And even if I did figure things out now, I’m not terribly interested in finding out what new piece of information will come along and shoot my plans to shit this time around. 

NYT on WIC

I’ve mentioned before that New York Times editorials often read like college newspaper editorials aged a few years.  Last Friday’s NYT editorial was no exception.  Entitled, “The War on Women” (hyperbolize much?), it opens like this:

Republicans in the House of Representatives are mounting an assault on women’s health and freedom that would deny millions of women access to affordable contraception and life-saving cancer screenings and cut nutritional support for millions of newborn babies in struggling families. And this is just the beginning.

Yikes.  Tell us how you really feel. 

Listen, I have about a million bones to pick with Republicans, whom I disagree with about as much as I do with Democrats.  But the “Republicans are evil and want to kill women/babies/minorities/unions/you/me/etc” schtick gets old after about the billionth time.  Even if I might agree with your ultimate point, I don’t care to listen to the same stuff over and over again. 

Anyway, I mention this only to highlight this portion of the editorial, which apparently identifies the Republicans attempt to “cut nutritional support for millions of newborn babies in struggling families”:

Beyond the familiar terrain of abortion or even contraception, House Republicans would inflict harm on low-income women trying to have children or who are already mothers.

Their continuing resolution would cut by 10 percent the Special Supplemental Nutrition Program for Women, Infants and Children, better known as WIC, which serves 9.6 million low-income women, new mothers, and infants each month, and has been linked in studies to higher birth weight and lower infant mortality.

They don’t even throw some buffer in there between the House Republicans and low-income women.  I read this and I envision John Boehner actually punching a pregnant woman, which is impossible because John Boehner is more hormonal than pregnant women.

Anyway, the message is clear:  Republicans want to “inflict harm” on women (as part of their “War on Women”) and babies by cutting (by 10% - essentially back to 2008 levels) WIC.  Which sounds horrible.  But sounds slightly less horrible when you actually get into the details of WIC beyond two paragraphs in a hysterical editorial based on the premise that one of the two major political parties is waging a “war” on one of the two major sexes in the country. 

For example, from Katherine Mangu-Ward over at Reason:

Seriously? The only cheeses allowed: American, Cheddar, Monterey Jack, Mozzarella, and Swiss? And the only permissible low-fat cheese is Kraft brand only? (Yeah, I bet no lobbying dollar changed hands on that one.) Dried peas, not fresh? White eggs, not brown? Pineapple juice is in, cranberry is out? Why?! It's safe to assume that in most cases very, very poor mothers aren't going to blow all the cash on brie. (And if they do, well, maybe they had a good reason that week.)

This locked down, scientifically-outdated list is exactly the reason to be skeptical of even clean-sounding government aid programs.

This was posed along with a copy of a WIC brochure, which can be found here and here.  The federal government did not allow women to purchase fresh fruits and veggies with WIC until 2009. 

And Megan McCardle in 2008:

But I hope we can all agree that it's time for WIC to take the long walk behind the barn. The goal of the program is laudable, and even (gasp!) something I think we should be spending government money on: making sure that poor, er, proto-babies get adequate prenatal nutrition. But as it has been implemented, the thing is a massive handout to dairy farmers.

And Laura McKenna, a former political science professor who was on WIC as a grad student:

Now for the weird part. You can't redeem your voucher for formula and walk out of the supermarket. You had to buy everything, the cheese and the juice and the milk, whether you wanted it or not. Most annoyingly, they required you to purchase vast quantities of milk. Like two or three gallons per week. Far more than an average person could consume. We had to give away some of the milk to neighbors so it wouldn't go bad.

Now for the annoying part. You had to cart all that milk home. Not every supermarket accepts WIC vouchers. We had to walk to a far off supermarket over on Broadway. All that milk doesn't fit in the back of babystroller, so you had to have someone help you get it all home. I suppose if you had car it wouldn't be such a big deal. But I'll let you in on a secret. A lot of poor people don't have cars.

Surely, there was some deal with the milk farmers over this one. Some Vermont Senator got a little pork back home in exchange for my backache.

That was the abbreviated story of us on WIC. I could tell you how humiliating it was to get the voucher signed by the store manager. Or long waits at the WIC office to get recertified. Or the required parenting classes.

And George Kent, in the International Breastfeeding Journal (yes, it’s apparently a real journal and yes, I’m getting a subscription):

The United States' Special Supplemental Nutrition Program for Women, Infants and Children (WIC) distributes about half the infant formula used in the United States at no cost to the families. This is a matter of concern because it is known that feeding with infant formula results in worse health outcomes for infants than breastfeeding…

The evidence that is available indicates that the WIC program has the effect of promoting the use of infant formula, thus placing infants at higher risk. Moreover, the program violates the widely accepted principles that have been set out in the International Code of Marketing of Breast-milk Substitutes and in the human right to adequate food…

There is no good reason for an agency of government to distribute large quantities of free infant formula. It is recommended that the large-scale distribution of free infant formula by the WIC program should be phased out…

And Matt Yglasias:

It can't be said often enough that the rules governing what is and isn't eligible for purchase under the Women, Infants, and Children (WIC) program is crazy and horrible (Ezra example -- soy milk doesn't count as "milk" but chocolate milk does). You could try to modify the program to make it less crazy, but it's obviously the result of a screwed up political process and undue power on the part of Big Cow.

And Ruth Marcus:

Starting in 2002, formula makers began to offer products with additives -- docosahexaenoic acid (DHA) and arachidonic acid (ARA) -- to replicate fatty acids in breast milk. Not surprisingly, these formulas cost more. The Agriculture Department, which oversees WIC, allowed state programs to decide what formula to buy. Not surprisingly, formula makers lobbied states to spring for the souped-up versions.

And, perhaps not coincidentally, when WIC was reauthorized in 2004, Congress tucked in language telling states that when soliciting bids for infant formula, they could not require manufacturers to include or omit specific ingredients.

You can guess what happened next: Formula makers began submitting bids only for the costlier products. A February 2010 Agriculture Department study pegged the added cost at $91 million annually, more than a tenth of the infant formula budget. Now new formulas with even more ingredients -- and even higher prices -- are being offered through WIC.

And Ezra Klein:

In writing the last post, I happened upon the Frequently Asked Questions for the food package in the Women's, Children, and Infants nutritional programs. They have, it turns out, a whole section on milk. And if it weren't so sad, it would be very, very funny.

You’ll notice a distinct lack of Glenn Beck in there.

That’s not to say there isn’t some merit in this program.  And I doubt even the staunchest libertarians would have much of a problem with a program like this.

But it’s at least something to keep in mind the next time you hear the all-too-predictable “Evil Group X wants to harm Likable Group Y” by cutting funding for a program that sounds good in theory but does nothing like that in practice.

Crab cakes, football, and oncology

Hot diggity damn, I think I finally have the Johns Hopkins thing sorted out.  After a month (literally – a month.  I first called them on February 1st), it looks like I’ll be trekking up to Baltimore on Friday morning.

I decided to go up to JHMI primarily because of Dr. Li.  Dr. Li graduated from Johns Hopkins Medical School, so she knows some of the doctors up there and was able to give me a recommendation.  That recommendation was Dr. Richard Ambinder, and I should be seeing him on Friday.

I also wanted to take advantage of having one of the best cancer centers in the country only 45 minutes away from me.  At least while the “more treatment” question is still kinda-sorta up in the air. 

The appointment-making process was pretty frustrating, but the upside of starting so early is that I was able to get all my records sent over (and hopefully reviewed) as well as my tissue.  There’s absolutely no reason for anybody to look at my tissue for the 8 millionth time, but JHMI demanded it, so whatever.  At least it gave Henry Ford a reason to get my tissue back from the NIH (the NIH tends to keep the tissue they receive if it’s sufficiently weird.  Mine was, of course). 

This was a long slog that began to stress me out last week.  And I was pretty upset about that.  I started the appointment process over a month before I actually needed an appointment for this very purpose, and I would have blown a gasket if I got a, “We can’t get you in until the end of March” line.  I know how difficult getting an appointment can be, especially at University Hospitals.  So I started early, got my records over in an instant, flawlessly executed a triple tissue swap, and dropped about 10 e-mails and 7 phone calls on these folks.  And as we got closer and closer to March, I started getting worried.  I would have let the whole thing go, except periods of radio silence were punctuated by periods of great hope.

Well the periods of great hope won out, and I should be able to do the doc visit and PET scan in one trip.  Because it takes a couple of days to read the PET scan, I didn’t want to have to fly back home since it would have required at least two weekdays.  But getting the scan done now, in early March, along with the doc visit will allow me to come up with a plan in advance of the scan, and go from there once it comes back. 

So what’s the expectation?  Well there’s a lot going on.  Back in January, when all the docs agreed to lay down their arms, everybody took more or less a wait-and-see approach.  Dr. Li and Dr. Advani would recommend CNS prophylaxis – chemo into the spinal fluid – either way.  If there is still residual activity on the scan, they would recommend additional systemic chemo, which is the really intense stuff.  Dr. Anderson left us with, “just watch, and see what the next PET CT shows.”  My guess is he’ll stand pat either way.  Dr. Al-Katib thinks I’m in a great situation without additional treatment, but he wouldn’t stand in my way of doing more.  It’s a cost-benefit game, he understands that, but he’s still the expert.  If he’s comfortable, I’m pretty comfortable.  Dr. Zelenetz, from Sloan-Kettering, independently recommended getting re-scanned in March, so we’ll see what he says.  My hunch is that he’ll also check if he sees no residual activity.

That leaves a lot resting on the notion of “residual activity,” and I’m not quite sure what the deal is there.  I had radiation, so that pretty much takes the chances of relapse in the original tumor site down to near zero.  My left upper chest/axilla area is a relative wasteland right now.  Shouldn’t have any problems there.  There’s always the concern this could pop up somewhere else – that’s why we do the scans – but the consensus is that this will be more a “baseline” PET CT – a very calm one, from which docs can measure any changes.  There was some “residual activity” on my last scan, but that was more a function of getting scanned only two weeks after radiation.  Radiation has continued effectiveness for a couple months, so that likely took care of anything else at ground zero. 

Personally, I’m pretty excited to meet with Dr. Ambinder.  I’m excited to meet with an independent doctor face-to-face who has everything at his disposal (records, pathology, tissue, history) and can give me another perspective on this whole issue.  I certainly appreciate Dr. Zelentez and Dr. Advani, but there’s only so much they can do to settle this issue under the table and on the phone.  From a patient’s perspective, it’s so valuable to be able to sit down with a doc and discuss things in person. 

The downside is that I’ll be back in purgatory next week.  I’ve largely succeeded in not letting this stuff take over my thoughts for the past two months.  It’s helped that I’ve been in DC, away from a million little things that remind me of my illness (this is another reason I chose to go to Baltimore – I have only horrible, Maryland Professionalism Course-induced memories of that city).  Work has kept me busy.  May day to day life is unrecognizable to the guy that set a personal record for consecutive days in sweatpants this fall. 

Given that I can see all my docs ending up in the exact stalemate that we were in back in December, I’ll probably end up going with whatever Dr. Ambinder recommends.  He has all the information in front of him, I’ll give him more on Friday, and I assume this will run through the JHMI TUMAH BOARD as well.  I think I made the right call in January.  But if everyone reverts back to their old positions, I’ll be right back on that fence.  Dr. Ambinder gives me the best chance of getting off it in a hurry, and if I’m confident in his recommendation, I’ll go with it. 

I’ve been overwhelmingly “just fine” for the past two months, but there’s always a little bit of nervousness.  Of course, after you get bit by the cancer bug, you always fear and expect the worst.  So there’s always the fear that the scan is going to reveal something horrible, off the wall, and unexpected.  With me, I’m sure that will be the case.  But I also sit back and realize that that nobody has even mentioned that sort of thing as a remote possibility, and 6 outstanding doctors from all over the country told me to do exactly what I did. 

Either way, I’m really looking forward to getting over this first hurdle.  Whatever decision I have to make after this, so be it.  At least that whole terrible chapter will be drawing to a close as well.  You want nothing more than to put this whole thing behind you, but once you accept that you can’t really do that – at least not for a while – it’s not that bad.  It’s the whole equilibrium thing.  Whatever the situation is, you recalibrate pretty quickly.  Once I get past this, I’ll finally be able to throw the thing on cruise control, close my eyes, and pray to God I stay on the road. 

I wore a hat

I wore a hat on Sunday.

That probably doesn’t sound like that big a deal.  But it was when I realized I haven’t worn a hat since August.  Since I put on a hat shortly after my hair said, “Screw this.  Call me when you’re done” and skipped town and realized that wearing a hat just made me look like a cancer patient who was wearing a hat to cover up his head.  Which, to me, was worse than somebody who just went around telling the world, “My head says I’m a fashionable young bald man, but my pathetic eyebrows say I have cancer.” 

This weekend was a weird one.  On Friday, Emily and I had a nice dinner at a Korean place in our hood (as part of our effort to visit every restaurant in our neck of the woods, which includes Chinatown).  We had a drink or two.  We stayed in.  We went to bed by midnight.  I don’t like doing that – I’ve been killing people for doing it for years, so I don’t plan on making a habit of it.  But we both didn’t feel like going out, so that’s what we did. 

I woke up a little after 9 on Saturday morning, and I just felt off all day.  Didn’t feel right.  Not necessarily bad, but just not normal.  I was tired, lethargic, groggy, whatever.  I got about 9 hours of sleep, didn’t have anything to drink, woke up early, worked out, and I still felt like crap. 

I was still feeling down when we went out on Saturday night, where I proceeded to contribute to a nearly $600 bar tab (there were a lot of us, but still) and washed it down with McDonalds.*  I guess I tried to employ the logic of chemotherapy – if you’re sick, just put all sorts of poison in your body, and then you will get better. 

Well it worked.  I woke up on Sunday after noon, with all my clothes on from the night before, in an apartment that looked like Ronald McDonald had blown himself up.  And I felt spectacular.  I just wanted to go out and do something.  So Em and I ended up biking halfway across DC.  Because it was nice.  And why the hell not. 

(*McDonalds is a rarity for me these days.  I’ve had McDonalds twice since August, and that is the extent of my fast food eating).

***

I’ll be entering recovery month 4 (or 3, depending on how you count radiation) this week.  Doctors/nurses told me a full recovery from chemotherapy takes about 6 months to one year.  That’s a long time.  But it’s also shorter than ACL or Tommy John surgery recovery, so that puts things in perspective. 

But honestly, I can’t really tell where I am in terms of “recovery.”  In most ways, I’m recovered.  On a day to day basis, I really have no restrictions.  I don’t take any medication.  I don’t get tired or fatigued.  I’m not limited in any way.  In some other areas, I’m still recovering.  The hair is working its way back, and although I don’t really notice much change, I look completely different from the dude on my work ID badge (a pic taken on my first day of work).  I’m still trying to build strength and stamina, but I think that’s more a function of not playing 50 or so broomball/football/hockey games a year.

The mental “recovery” is sort of weird.  I think about “it” more than I thought I would.  Pretty much every day, although never more than just in passing or fleeting thoughts.  I imagine this is more a function of still having some things “up in the air” with respect to treatment, and I figure this will stop shortly after I see a few docs and get re-scanned and things settle down.

Other than that, I can count the actual number of life changes on one hand.  I eat better and I drink less.  Other than that, I’d have a hard time coming up with things that I do differently now, or things that are substantially different now. 

But I still don’t consider myself “recovered.”  I still don’t consider this whole thing over and done with.  Somebody asked me a few weeks ago, “Do you feel like a cancer survivor?”  And that’s a good question.  I wonder exactly when you step into that role.  When you feel confident enough that you can state with certainty, “I beat this.”  At the moment, I don’t really feel the need to put labels on myself.  It is what it is, and I don’t try to think too much about things I can’t control or the distant future.  As I’ve said, it’s just not that productive. 

But I do get excited about very simple things – like putting on a hat, or shaving again, or the hairs that are small signs of life on the nuclear wasteland that is my left axilla.  I imagine I’m different in a thousand little ways that aren’t entirely recognizable as well, but I’m not sure I’m going to count those.  In some ways, I’m happier and more pleasant.  In other ways, I’m more cynical and hostile.  I’m interested to see if those wane with time. 

For now, the bottom line is that I feel pretty damn good on a day to day basis.  And if the doctors and nurses are correct and I’ll hit full recovery down the road, I’m pretty excited to see what that’s going to be.