The Whistles Go Woo

I had no idea collecting spinal fluid was like collecting maple syrup.  I bet it tastes worse though. 

The picture you see above (courtesy of Emily!) is as close as I hope any of you ever get to a spinal tap.  But it’s quite a masterpiece.  I didn’t know if I actually wanted to look at these pictures – might make me more concerned about the procedure – but I decided they were pretty cool.  I think I’ll frame this one and use it as a conversation starter. 

Round 2 – the treatment phase at least – was substantially more difficult than round 1.  Nothing against the fine professionals at Hopkins, but needle proficiency was not at an all-time high yesterday.  The morning blood draw left my arm with a bit more blood on it than I usually like, and the spinal tap…well let’s just say it took a few punches before we hit pay dirt.  Which is fine, except in the spinal region. 

Nonetheless, everybody got what they needed.  Due to my hellish round 1, I changed things up this time around, going with the IV fluids during the procedure and spending the rest of the day as flat and still as possible.  Will it work?  I’ll let you know Thursday afternoon.

***

More interestingly, I did get to speak with Don (Dr. Ambinder’s PA, who will be referred to as “Don” from here on out) about the results of my spinal fluid analysis.  The bad news: nothing.  The good news: everything.  The whistles.  They go woo.

Don actually didn’t seem like he was going to bring up the issue during our brief conversation, so I asked about the fluid analysis directly.  I’ve only been with these folks for a couple weeks, so it’s still hard to figure everything out: Do they routinely tell patients everything?  Do they only tell patients if the news is bad?  How long do these things take? 

In any event, Don game me a comprehensive answer in an excruciating manner.  The way he explained it, pathologists look at four things:  The number of cells present (mine was 1 per sq millimeter), the glucose and protein levels, which elevate when there’s excessive cellular activity (my levels were normal), and the cells themselves in a process called flow cytometry and one other process that involves essentially smashing the cells to analyze them.  Pathologists did not detect any lymphoma cells or abnormal activity during the final two tests.  For good measure, I asked Don if I was correct in interpreting this as good news.  He said yes.  So…woo.

Of course, this was the expectation.  And there’s still some chance that one of the later fluid samples comes back and something bad shows up.  But this was as good as the news could have been based on our first sample.  Had there been activity, I’m looking at a much longer IT chemo regimen…possibly in the 15-20 treatment range.  That would have taken a long time.  And been unpleasant.  I wanted to avoid that.  As it is, I’m looking at 5 treatments total (3 more).  And, I pray, a very good (and universally agreed upon) long term prognosis. 

Still have one final hurdle to clear – the PET scan analysis.  Of course, like everything else, this thing got jacked up.  I thought I had all 3 discs in early March; I didn’t.  I tried to get the discs before my first treatment, and they didn’t get in the mail in time.  I hoped to have them before my second treatment, and somebody put the wrong tracking number on the discs; they got lost.  Finally, I got the thing in the mail on Saturday and got it to Don today.  So he’s gonna take a look at some things.  And hopefully I can clear that final hurdle. 

***

I’m just going to spend the next 24 hours or so horizontal on a water-and-caffeine diet.  As much fun as the Oxycodone pills are, I’m going to try to avoid them if I can.  But if I can’t…expect more fun posts.

Great Disasters in Facebook Status History

I was sifting through my Facebook status updates last week (gotta do something when you’re trapped on your back), and came across this gem:

Less than thirty-six hours later, life got worse.  Guess that art fair showed me.

Sorta reminds me of this clip from Family Guy:

If that could never happen again, that would be great

Last week was the worst “week off” ever.  I know most people would kill for a week off work, but I’d rather burn the midnight oil at the office than spend another week trapped on my back wondering if I’ll be able to get up and take a leak before the headache hits.  Perhaps a graph will help convey the not-awesome nature of last week:

This is my Fitbit chart.  For those of you not in the know, a Fitbit is essentially a glorified pedometer.  It does all sorts of stuff, but it primarily tracks the number of steps you take each day.  So this is my week o’pain in annotated graph form.  For comparison purposes, I usually log about 9,000 steps a day. 

As you can see, I got really excited about not feeling pain and went for a run on Wednesday.  Thursday is when pain set in; I only made it to about 6,000 steps before I shut it down.  This started my descent into a horribly horizontal Saturday that included loads of couch time.  I tried Apparently I tried to do something on Sunday; I have no idea what.  But it didn’t go well.  By Monday, I was feeling the pain once again, and that’s when I decided to call Hopkins to see if they could fix me.  That lead to my relatively-active Tuesday, where my step total was boosted by a trip up to Baltimore, pain pills, and Wing Night.  But the party did not last long:  Wednesday might have been my worst day, as I was floored by a combination of pain and narcotics.  I started to feel better on Thursday, but I kept my step count down for fear of dislodging what I concluded must be a delicate “plugging of the puncture site” in my spine.  I hit my required 24-hour headache free mark on Friday morning, and was so excited that I walked to and from work.  I continued my vertical winning steak on Saturday, although the data sadly does not include a late-night bike ride to the bar. 

***

I’m fine now.  And, more importantly, prepared for whatever the next round will throw at me.  But this past week was very, very difficult.  I try to calibrate my expectations, to stay grounded, to stay realistic, and so on.  But nothing really prepared me to be essentially knocked on my ass for a week.  And that sucked, both physically and mentally.

And it’s mostly because I was pretty unprepared for this.  As I’ve said, I’ve never been a headache guy.  I don’t get bad headaches.  I didn’t really know what it was like to have one of those headaches where you just cannot function.  Likewise, I’m being told that this is a relatively minor procedure (as “minor” as spinal chemo can be), that people usually go to work the next day, that it isn’t anywhere near what R-CHOP was, and so on.  I was definitely warned about the headaches, but…I don’t know.  I expected something.  I just didn’t expect this.

I guess I just didn’t expect – in March, a few months after remission, when I’m feeling virtually no ill effects from cancer or treatment – for this to completely shut down my life.  It was as if The Seaward popped out of the woodwork to remind me, in no uncertain terms, “I still got you by the balls, buddy.”  It wasn’t a pleasant reminder.

That, more than anything else, is why this past week was so significant.  Headaches…whatever.  They were awful, but in and of themselves, they weren’t anything of historical significance.  But those headaches were a manifestation of so much more:  The power that cancer still holds over my life, the excruciating uncertainty of still not having all my test results back and thus, the uncertain nature of my treatment, the helplessness, the first time in three months that I’ve really had to deal with this stuff, and the first time I’ve had to do it in DC.  Make no mistake, I always respect this horrible curse, and I know exactly what it can do.  But it’s a little more “real” when you’re abruptly reminded of its awesome power.  As if the beast simply has to lift its finger to render you horizontally helpless for an entire week.

Of course, it’s also worth remembering that the pain was caused by neither cancer nor the chemo.  And it’s always worth remembering why I’m doing this.  And that helps, as it always has.  I’m taking an increasingly fatalistic view of the entire situation.  That may be good or bad, depending on how you see things.  But I think it’s certainly more peaceful.  I made a decision.  I made what I believe to be the right decision.  I made it knowing the risks and side effects.  And the fact that those effects turned out to be more than I bargained for doesn’t really change the equation. 

So I had about a week to sit there and let these thoughts stew while trapped in my horizontal Alcatraz.  On one hand, the whole episode was horribly depressing and deflating – you just get life going again and then, in an instant, the beast grabs hold of your life like never before.  On the other hand, you’re still one day closer to hopefully being finished with this thing.  And that has always been the ultimate goal.  And in the end, that goal takes precedence over everything else.  That’s harder to remember when you thought you had ascended from hell and suddenly you’re stuck in bed unable to look at a computer screen or missing work in favor of two-hour stints in the chemo room.  But then again, nobody ever said this was going to be easy.

***

So I’m good to go now, and I’ll have about 48 hours to enjoy this one until it’s Spine Time again on Wednesday morning.  There’s a fair amount of potentially good news on the horizon:  I finally got a disc of my third PET scan, so the Hopkins folks will be able to compare my scans and figure out if anything looks abnormally abnormal (some things inside me – like the affected lymph nodes – will always be abnormal).  I’ll also hopefully hear how the CSF analysis checked out.  Also good:  the fact that I ended up confined to headache hell after injection 1 does not mean that this is going to happen after any of the other injections.  Apparently this stuff is pretty random – it’s not as if certain people are more headache-prone than others.  In any event, just like chemo round 1, this stuff will be a hell of a lot easier to tolerate now that I know what to expect.

So Wednesday should be a significant day, and hopefully it’s a positive one.  You know my feelings on this – hope for the best, expect the worst, and probably end up somewhere in between.  But no matter what, this week will hopefully reduce the uncertainty.  I feel like I’ve been saying that forever but…it’s gotta end some time, right? 

Emily drew the short straw this week, so she will accompany me up to Hopkins on Wednesday.  I’ll see if I can get some more media for you folks – since this is all done behind my back, I’m really not sure what the entire process looks like, but I’m told it’s interesting.  Of course, this all depends on how amenable she is to photographing people sticking needles in my spine.  I should probably ask her in person instead of indirectly via blog.  I’ll probably do that on Wednesday. 

Until then?  Well I’ll just enjoy my “vacation” by trying to bill some hours.