Long term outlook remains better than short term, which is good when you’re thinking long term; bad when you’re stuck in the now.

 Artist’s rendering of the GW ER on Saturday night

I’m doing “better.”  Which is to say, I’m no longer dying.  I’m not sure it’s humanly possible to feel worse than I did this weekend, but I’m not terribly interested in finding out.  “Better” in this case means I can’t really get up or eat much.  But I guess it’s better than the alternative.

The slightly more optimistic way of looking at things is this:  I’m done.  I’m done with cancer treatment, hopefully for good. I’ll get around to being excited about this at some point in the future, hopefully after I become a functioning human being once again.  But for now, my focus is on fixing my more acute medical issues.

***

Anyway, the developments on the cancer front:  I spoke with Dr. Ambinder twice last week, on Monday and on Tuesday.  I called Hopkins on Monday because I had a pretty terrible weekend last weekend (before my worse-than-terrible weekend this weekend).  I was all set to head up to Baltimore to do some stuff when Dr. Ambinder gave me a ring to discuss the situation.  He had two thoughts.  First, he didn’t think dragging me up to Baltimore and doing IV hydration/caffeine would be any more effective than going out and buying some Red Bull (his honest suggestion), and second, he thought powering through the last 3 treatments was not the best idea in this situation.

The second recommendation bothered me.  For a number of reasons.  I mean, I’m just a competitive person to begin with.  So when a doc tells me we’re going to do 5 injections, I’m going until I hit 5 injections.  If I don’t, I have failed.  But more importantly, in any battle between short term pain and long term benefit, I’m opting for long term benefit.  Saturday night ER visits, as horrible as they are, are vastly preferable to playing this whole game all over again.  Cancer is the ultimate “leave it all on the field” game.  There’s no sense in playing if you can’t give it all you’ve got.

But as a wise man I once knew (Dr. Anderson) always said, the answers here are not black and white.  The battle against cancer is fought in shades of gray.  This is particularly true with my battle.  If my doctors agree on one thing, it’s that nobody knows for sure how to treat me.  That’s unnerving, for sure.  But that’s life. 

So there comes a time when you just have to put your faith in people and move on.  That time is now.  And when I spoke with Dr. Ambinder for a second time on Tuesday, I was able to do that.  But as you know, I’m not an optimist. I don’t put blind faith in things.  I need concrete reasons to feel confident and at ease.  So these are my concrete reasons.

First, Dr. Ambinder told me “I had a long discussion about your case with my team, and our consensus is that we shouldn’t go forward with additional treatments.”  It was particularly important for me to hear that Dr. Ambinder had discussed my case with others.  I was still reeling from Dr. Anderson’s recommendation, and I needed to hear directly that Hopkins was giving my case the attention I needed.  This was particularly important since I have only been with them for a month.  So if I’m confident that my case was thoroughly discussed by a number of doctors at one of the nation’s top cancer centers, I’m not going to keep myself up at night second guessing myself.

Second, Dr. Ambinder stated that my other tests were “absolutely 100% normal.”  In this, he was referring to my scan, my spinal fluid analysis, and my blood work.  Across the board, there were no red flags on any of the tests.  The decision to stop further treatment was based on these tests, at least in part.

Third, Dr. Ambinder explained that the majority of the benefit from the treatment comes with the first injection.  It’s important to remember that this treatment is preventative, not remedial.  Unlike the R-CHOP I went through in the fall, we’re not trying to kill a certain number of cancer cells.  I mean, we are.  But nobody has any clue how many (if any) cells are present.  If I only got two cycles of R-CHOP,that would be a problem since that wouldn’t be enough to eradicate all the cancer cells.  But here, because docs have not found any cancer cells at all, it’s likely the two doses of intrathecal chemo have taken care of any potential problems. 

I pinged Dr. Li to get her take on things, and she agreed, writing, “No one really knows how many LP is enough for prophylaxis and potential benefit from additional LPs probably is not worth the headache [Ed: Is this a pun?  Are my cancer doctors using puns?] so I'm comfortable with the decision.”  Which, of course nobody knows how many LPs are enough.  If anybody knew what the f*ck to do about my cancer it wouldn’t be my cancer.  I should have just fired some darts at a cancer-treatment dartboard back in August.  Would have saved me a lot of stress.

In all seriousness, though, if Dr. Ambinder is calling my tests 100% normal, if he discussed the case with his colleagues, and if Dr. Li independently agrees with the decision, then I’m ready to throw up the deuces and finish this chapter.  I can sit here all day and think, “What if?”  But I’m not.  It’s not productive.  I’m not substituting my concocted nightmare scenarios for the reasoned judgment of very good doctors.  And I won’t let this shit take any more of my life than it already has. 

Plus, no matter whose figures you run, my chances of never having to deal with this again are somewhere in the realm of “very good.”  In the post-cancer world of new perspective, I’ll take those odds.

GWs ER, a CT, and a Standing O

My first experience as a DC resident was back in 2006.  That summer, I lived in one of the dorms at George Washington University, just a few blocks from the GW hospital.  Since I spent all summer in that area, I became very familiar with the location and layout of the GW Emergency Room.  Which, I thought at the time, would be useful in the future if, hypothetically, I had to help somebody navigate to the GW ER as I sat semi-conscious in shotgun with my head in a bag vomiting my eyeballs out wondering if I’m going to live long enough to make it to the ER, or if I even want to.

Well, the summer of ‘06 paid off this weekend.

Every time I think I’ve hit rock bottom, I manage to drill through that rock.  Well whatever I hit on Saturday night, I’m not sure something below that exists.  I had been getting slightly better throughout last week, but I felt horrible all day on Saturday.  I was barely awake most of the day.  I was dealing with the worse headaches thus far.  They wouldn’t subside when I was flat on my back and they didn’t respond to medication.  I got progressively worse as the evening wore on until the headaches became so severe, they triggered severe nausea.  I tried to get some water in me and that was the tipping point.  I ended up vomiting up the water, plus everything else (which was absolutely nothing, since I wasn’t able to eat all day).  My body didn’t care that there was nothing in it.  I was going to vomit until I purged my intestines. 

I got a call into the Hopkins Oncology department before I started puking; the on-call doc called me back right after.  We decided the most important thing was to take care of my pain and nausea, and quite frankly, I wasn’t sure I would have been able to make it to Baltimore.  So I decided GW would get to deal with me, and Emily and I set out on the 18 block journey to salvation.

I think I briefly died en route to GW.  I distinctly remember thinking, “This is the worst I have ever felt in my entire life.”  I don’t think it was even a close call.  The only good part of the trip is that my horrific nausea distracted me from the splitting headache, and the constant vomiting made me forget about my nausea.  Poor Emily, who not only had to deal with my traveling circus sitting shotgun, but had to weave her way down the horrendously irritating I street Saturday night crowd.

We made it to GW, and I must have looked like the grim reaper walking into the ER.  I walk in, covered in sweat, holding a bag of vomit, with puke on various parts of me, barely able to see, stumbling (I was dizzy and lightheaded), and pale as a ghost.  I was able to explain my situation to the admin nurse, then I sat down and vomited.  Then I went to see the triage nurse.  Then I vomited.  Then they moved me to a room.  Then I vomited.  Then the doctor came in.  And I vomited.  He finally gave up on waiting for me to answer and asked Emily to explain the situation.  I vomited. 

From there, things started getting a little better.  ERs never move fast enough when you’re in pain, but I gotta hand it to the folks at GW, who ended my stay in hell within about 20 minutes of my arrival.  It’s a little sad that I’m now at a point where I can basically treat myself – I requested IV pain and nausea meds by name (Dilaudid and Zofran), IV fluids and a head CT when I walked in – but my god, when you’re in the sort of state I was in that night, the second the IV drugs hit your veins is a magical moment.  The picture above was taken moments after that, so that is more euphoria than pain. 

I don’t know what the deal was, but I saw about 3 doctors and 4 different nurses during my stay at GW.  I retold my story at least 5 times.  I know its sometimes difficult to find a doc in an ER – especially at 11:30 on a Saturday night – but maybe I was special or something.  Or the docs heard “cancer” and came by in droves.  In any event, I certainly didn’t feel like I wasn’t getting enough attention.

After the docs made sure I wasn’t going to razz in their CT machine, they took me down for a head CT (this was requested by the docs at Hopkins and is also a precautionary measure whenever somebody comes in with severe headaches).  Of course, everything looked fine (blood work and CT).  So I laid there in a state of moderately-coherent euphoria for a couple hours as they attempted to pump some fluids back in me.

I did get to experience a big-city ER at 2am, which is always a nice treat.  But I didn’t want to occupy one of their rooms all night, so I finally scooted out of there around 3am.  And I did so - I swear to you and I have no idea why - to a round of applause from the docs and nurses in the ER.  Whatever.  I think I earned it.

***

So, quite obviously, this isn’t working.  I’m now over a week and a half out of my last lumbar puncture, and I’m still barely functional.  When Dr. Ambinder and I spoke last week, our plan was to let things go if they were getting better, and do something else if things got worse.  Well, this weekend, things got significantly worse.  I was better on Sunday, but I’m still not able to “do things” or “participate in society.”  This can’t continue.

So I will follow up with Hopkins early this week.  The docs there should be aware of the situation – I spoke directly with the on-call oncologist, and my ER doc at GW spoke with one of the docs at Hopkins as well.  They know the deal and they’ve reportedly alerted Dr. Ambinder.  So we’ll see what comes of all this early this week.

As always, pray for mojo.