Oh, how the mighty have fallen

St. Patrick’s Day: A Retrospective

2007:

A happy group of college seniors get in line at the bar at 5am, only to wait nearly two hours to enter.  While standing in line, one bright individual who had already been let into the bar decides to repeatedly heckle this fine group of Americans, even choosing to moon them through the window.  Minutes after this picture was taken, that same dude tried to leave the bar while still talking trash.  This leads to a quite literal gang-beating, with the final blow delivered by large man standing in the back of this photo, former Michigan lineman, and current CFL combine record-setter Michael Knill. Asshole crumples into a heap outside, we are satisfied, and St. Patty’s Day begins.

2008:

There are no photos from St. Patty’s ‘08.  This is good news for all who were involved in St. Patty’s ‘08. 

2009:

    

The epic battle of Emily v. Burrito (she loves when I post this picture).  Also, the last time I was “sick” and my last non-chemo related vomit.  Due to said burrito. 

2010:

GIN BUCKETTTTTTTTTTTTTTTTTTT!  What’s a gin bucket?  Gin bucket.

2011:

Sad faux-artistic photo of sad St. Patty's Day ‘07 shirt and Oxycodone.

How far I have fallen.

***

If there’s ever a moment when you realize your “College Days” are over, it has to be the first St. Patrick’s Day after graduation.  Sure, I was in law school for the past three years.  But that’s not terribly different from college.  In fact, it’s almost like a regression back to high school.  In any event, you still have the ability to take an entire weekday off to go drinking, and nobody is going to yell at you.  That’s not real life. 

Now?  Well now, even if I was perfectly fine, I wouldn’t have too many friends to go drinking with me at noon.  Now, I can’t even stay vertical long enough to get drunk.  Now, I’m on SuperPills that warn you to wean yourself off of them slowly if you take them for more than couple days so you don’t experience withdrawal symptoms.

(Side note:  The bottle warns me “alcohol intensifies effect.”  Uh…isn’t this the worst warning ever.  It doesn’t say, “Do not consume alcohol while taking this drug.”  It literally tells me that alcohol “intensifies” the effect of this already intense drug.  Sure, it tells me to use care when operating machines.  But I don’t operate too many machines these days.  If I wasn’t a responsible human being and/or incapacitated, this would be a terrible thing to write on a bottle.  It’s like writing “Warning! This can get you twice as drunk for a quarter of the cost!”  Dumb label).

I’ve long known “it” was over, but I’ve been pretty preoccupied every single day since June 1st.  Haven’t really had time to think about it.  It didn’t really set in until today.  To say the least, it was depressing. 

***

Which was unfortunate, because otherwise, I had a very good day.  Only very minor, sporadic headaches.  Strong periods of vertical activity.  Able to get some work done.  Thursday afternoon was my D-Day: if I wasn’t feeling better by then, I was going to head back up to Hopkins to patch the damn spinal leak. 

Of course, I was paranoid all day.  I envisioned whatever it was that had “patched” the hole was hanging on by a thread, and thought that I could dislodge it if I did jumping jacks or moved around too much.  So I moved gingerly all day, not wanting to walk too far or make too many movements so as to re-spring a leak in my spinal column.  I have no idea if any of this makes any biological or anatomical sense whatsoever, but it made sense in my mind, so that’s all that matters.  I would even look forward to recharging over the weekend and being ready to go next week…except I’m scheduled to do this again next Wednesday.

But such is life.  I’m really anxious to get some more info on various tests.  I should know more about the CSF analysis on Wednesday, and I’ll hopefully have my third PET scan disc with me so we can compare images, although it appears the first shipment of discs somehow got “lost” by UPS so…if you see my PET scans anywhere, let me know.  I imagine I’ll be an exponentially happier person in about two weeks.  Provided nothing bad turns up in the final two tests.  And my spine cooperates.  And nothing else comes up. 

One can hope.

Spring Break 2011: The Chemo Room

I actually tried to put up a post on Wednesday night, but I couldn’t.  Too doped up.  My apologies. 

But the trip up to Hopkins was moderately successful.  I didn’t know what the plan was when I went up there.  Apparently, nobody else did.  We eventually settled on, “Let’s try some stuff.” 

So the first thing we tried was this:

 

IV hydration.  Which is certainly not chemo…but was given in the chemo treatment room.  And there I was, back in the chair, around other people getting chemo, and things got weird.  Not a fun feeling to be back in that situation, regardless of what was being pumped in my veins. 

But aside from the depressing feeling of being “Back in the Chair,” things went pretty well.  I have been very impressed with my care up at Hopkins so far.  I have numerous phone numbers and e-mail addresses in case I need to contact somebody.  I called one of those numbers on Tuesday because my headaches just were not going away, and within an hour, I had a new appointment to come in and get things figured out.  After getting some blood drawn, I was back in the chair getting fluids.  And they even had a dude walking around the treatment room with a tray of goodies.  (I almost felt like I was on spring break on a cruise ship or something.  Had the treatment chair been a deck chair, the fluorescent lights been the sun, the IV been vodka, and the elderly men around me been college Girls Going Wild, it would have been just like spring break.  I’ve even felt hungover for an entire week, so we’re covered there).

Most impressive was the fact that one of the head nurses and Dr. Ambinder’s PA sat down with me in the treatment room to try to figure things out.  I really just wanted to know two things:  1) Was my situation normal, and 2) Was there anything I could do about it. 

And my situation is not uncommon.  Don (Dr. Ambinder’s PA) explained that he had a similar procedure performed when he had knee surgery a couple years back, and called the following week the “worst week of his life.”  Patients can take anywhere from 7 to 10 days before the headaches subside. 

Most interesting was the explanation for the headaches.  Turns out that sometimes, the internal puncture site doesn’t completely seal itself for a while.  This leads to leaking spinal fluid which, in turn, leads to a constant change in pressure in the spinal column which, in turn, leads to constant headaches.  When you lay down, you equalize the pressure.  When you stand up, you change the pressure, and it’s headache city. 

There are a couple ways to deal with this.  One option is to get some fluids through an IV, which I did.  Another is to manage the headaches with pain medication, which I am doing.  And the third option is essentially to “patch” the hole.  This is a procedure in which my own blood would be used to seal the hole and prevent any further CSF leakage.  But that would require another puncture – something we decided to try to avoid if we could.

We bumped my treatment to next week, so the short term plan is this:  I’m going to try to manage the headaches with meds for a day or two.  If the headaches still don’t subside, we’ll go patch the leak. 

Ah yes, the meds.  They have me on oxycodone, which is some serious stuff.  Of course, I fist had to get the medicine, which was an ordeal in and of itself.  I live across the street from a CVS, but I’ve heard some terrifying things about that store.  So I tried the Safeway down the block, which, sadly, was out of Oxycodone.  So feeling a headache coming on and being quite a distance from any other pharmacy, shady CVS was my only option.  And it worked out fine.  I mean, I got the pills from a guy named Tito.  And Tito didn’t work “in the store” so much as he worked “in the alley behind the store.”  And maybe my pills didn’t come in a “plastic bottle” as much as they came in a “plastic bag.”  And he didn’t really ask for my prescription as much as he asked me what I wanted.  And I couldn’t use my HSA card because Tito only takes cash.  BUT I GOT THE PILLS DAMMIT. 

But whatever I got definitely packs a punch.  I almost never react to medication, but Wednesday night…yikes.  I took a pill before attempting to write a post and things got interesting.  This only lasted about 15 minutes, but I can see how this stuff can become addicting.  But the stuff is also quite effective.  And when you’ve been dealing with life-crushing headaches for the better part of a week, the euphoria is half drug-induced and half actual euphoria caused by no longer feeling pain. 

So Wednesday rolled around and I woke up to do some work.  I’m still trying to go a few hours without a headache before going into the office.  But I didn’t make it on Wednesday.  Within hours I was hit with a pretty bad headache, countered with a pill, and that just caused me to feel nauseous.  So I laid down.  And I still didn’t feel good.  Finally, I decided to get up and make myself some food.  And I felt better.  So now I have headaches when I lay down and I feel better when I stand up.  Because that makes sense. 

Anyway, if anything, I’m just sick of writing about headaches.  Probably as much as you’re sick of reading about them.  I’m in a weird position now:  honestly, after I’ll I”ve been through, it’s not like some stupid headaches are going to get me down.  But this stuff is really irritating.  I’m sick of not being able to work.  I’m frustrated that I tore up all these other procedures and treatments, and one tiny puncture knocks me on my ass for a week.  I’m pissed that I”m really not able to leave my apartment.

But such is life.  I’ll give these things another 24 hours or so, and if they refuse to depart, I’m going to fix things with my own blood.  Enough is enough.  The good news is that this doesn’t necessarily mean I’ll have to deal with these things every time, but still.  Last week has been less than fun. 

So we’ll see how things go.  Got nowhere to go but up.

Who needs doctors when you have the Los Angeles Times looking out for you?

The Los Angeles Times editorial board writes:

Federal law prohibits payment to people who donate organs, such as kidneys, other than to compensate them for travel and other related expenses. But it is perfectly legal to pay people for their plasma, sperm and ova. As for blood donors, they may be paid, but no major organization does so. In other words, a complicated set of rules and ethical considerations determines whether people are paid to give up a part of their bodies.

The law places bone marrow in the same category as kidneys. But a court case advanced by the Institute for Justice, a libertarian law firm, argues that marrow, which can save the lives of people with leukemia and other life-threatening illnesses, was wrongly included. The suit raises some valid arguments in favor of the societal good that might come from paying marrow donors (the amount suggested by the institute is $3,000, paid through an independent nonprofit agency), but those are outweighed by various ethical and practical considerations.

The Times comes up with four main reasons why bone marrow donors shouldn’t be paid:  1) “Potential donors would have to be advised that their chances of actually collecting money were remote”; 2) “Money motivates some donors to hide troubling medical conditions or troubling health histories, endangering recipients and even themselves”; 3) “Altruistic donors see that others are paid for their tissue, they tend to think the problem is being taken care of and that their participation is no longer needed”; and 4) “No other country that participates in the international donation of bone marrow allows payment, according to the National Marrow Donor Program.” 

The Times concludes that, “At this point, though, financial reward carries too many risks with little certainty of real benefits.” 

The best I can tell, bone marrow donation really impacts two people: the donor and the donee.  It does not – as far as I know – impact the Los Angeles Times editorial board. 

So while I appreciate their concern for poor bone marrow donors who “would have to be advised that their chances of actually collecting money were remote” and cancer patients who would bear the risk of “donors [who] hide troubling medical conditions,” I must respectfully ask them to go to hell. 

Whether an individual chooses to add him or herself to the bone marrow registry is a personal decision.  Whether that individual will do so for $3,000 or whatever amount an organization chooses to pay is a personal decision.  The level of risk a cancer patient is willing to accept in exchange for a potentially-lifesaving treatment is a personal decision. 

It’s bad enough to hear this sort of incoherent logic when major newspaper editorial boards feel like playing with other people’s money.  But when they start messing with actual lives – particularly the lives of people affected by blood cancers – I get slightly more incensed. 

Horizontal Hostage Crisis enters day 5

I just laid around all day in my retro white shirt and blindfold.  Also, headaches have beards.

This is quickly approaching “Worse Than Actual Chemo.”  At least during chemo I could pretty much move around and do things on a day-to-day basis.  I probably could have gone into an office if that was required.  Most importantly, being vertical for long periods of time was an option in my R-CHOP days, upon which I’m now starting to reflect fondly. 

Now, I was out of bed for about an hour today before the headaches kicked in.  I didn’t even bother going into the office.  I know have some idea of how these athletes with long-term concussion issues feel.  You get out of bed every day thinking, “This is going to be the day I feel better,” you get excited every time you go a couple hours without feeling like hell, and you’re quickly dissuaded of that notion every single time.  You end up quietly and frustratingly resigned to a dark, horizontal hell wondering when it’s all gong to stop.  I sorta understand Sydney Crosby.  Except I’m not a whiny bitch and I can grow facial hair.  But still, I wouldn’t wish this on anybody. 

I was talking with a friend last night who asked me how things were going, and I responded with words I don’t quite remember but a tone that said, “I’m really pissed off.”  And she mentioned that this was the first time I sounded really upset during this whole ordeal.  And I think that’s right.  And I think there are a couple reasons for this.  First, I’m used to being awesome.  I’m being slightly facetious, but by that I mean I’m used to excelling through chemo, not reacting to drugs, not getting sick when I have no immune system, tolerating pain and inconvenience, and so on.  This is different.  This is pretty much the worst case scenario when it comes to side effects from treatment, and I really haven’t had to deal with this before.  Second, this was somewhat unexpected.  I guess it was within the range of things that I was told could happen, but in no way did I expect not to be able to go to work five days after getting treatment.  Especially when I felt great for the first 24 hours after the injection.  Third, headaches have a special destructive power.  It’s right up there with the most severe nausea I experienced in terms of its ability to ruin your business.  I know a lot of people deal with these headaches all the time, so this isn’t new to you (I wonder if Percy Harvin is a reader?). But I’m not a headache guy.  I’ve never really had to deal with serious, non self-induced headaches before.  But this is a taste of a hell I want no part of. 

Normally, I’ll tough things out until my next doctor’s appointment.  But when I slowly descended into headacheland again on Monday, I decided enough was enough.  So I called up the people at Hopkins and told them I needed some sort of solution. I really just wanted to know if five days of headaches following the spinal tap was normal, and if there was anything at all I could do about it. 

So we’re going to try some stuff.  What stuff? I don’t know.  Don’t even care, really.  They could shoot me in the foot so I don’t pay attention to the pain in my head and that might be an upgrade.  This is ridiculous.  Tomorrow is supposed to be my last day before treatment #2, and these things show no signs of subsiding. I’m not going through two months of this stuff if I don’t have to.  And I’m certainly not enthusiastic about not being able to work effectively for a couple months.  A lot of people get up in the morning and grumble because they have to go to work.  I’ve reached the exact opposite position.  It’s less than fun. 

So I honestly don’t know what we’re going to do up in Baltimore tomorrow morning at 8am, but I’m pretty excited to find out.  I’ll take pictures.  If they let me. 

A horizontal weekend

One day I’ll learn not to taunt various forms of cancer treatment.   I mentioned that radiation was a walk in the park compared to chemo; I was promptly rewarded with a three-hour vacation in the Radiation Oncology clinic.  Last Wednesday, I wrote a post entitled “You call that chemo?”, which was immediately followed by four days of on-and-off headaches of the absurdly-irritating variety.

I was feeling sort of in-the-clear when I made it through Thursday morning without any real side effects.  But as Thursday afternoon rolled on, the headaches became progressively worse.  I left work on Thursday, worked from home on Friday, and spent most of the weekend laying on my back.  I’ll get a few hours here and there when I can stand up and move around without any ill effects.  But it seems like I’m a walking hourglass – I only have a certain amount of time before I end up right back in the throes of some weird headache that seems impervious to pain medication.  This is actually less fun than it sounds.

Things came to a boil on Sunday evening when I vomited five times.*  Of course, that had nothing to do with headaches, chemo, or nausea, and everything to do with Mitch Albom’s appearances in ESPN’s Fab 5 documentary.

In all honesty, I’m more irritated than anything else.  In some ways, this is the worst aspect of cancer treatment.  I can’t really go on with my day to day business, since some of that business requires me to be vertical.  But I’m not really actively engaged in cancer-fighting either.  Instead, it’s some stupid middle ground where I’m quasi-trapped on my back, not knowing how I’m going to feel or when I’m going to feel it.  It’s a ridiculous game of cat and mouse.  If R-CHOP was all out warfare, this is the guerilla insurgency.

Obviously, I’m going to try to figure out some way to deal with these things.  I’m not terribly interested in going through the next two months battling headaches five days a week.  Really, I’m just trying to figure out two things: 1) Is this normal, and 2) Is there anything I can do about it.  I’ve asked the questions before, and by all indications, this is normal and there’s not too much I can do about it.  If that’s the case, then that’s the case and I’ll just tough it out.  But if there’s any way to avoid that, I’m open to suggestions. 

In other news, I’m slated to have my second intrathecal chemotherapy treatment on Wednesday this week.  I’ve heard different answers on this, but I believe the plan is not to remove any CSF (spinal fluid) this week.  I have no idea if this will have any bearing on the headache issue…but it seems to me, logically, that the more CSF you remove, the more you will mess with the pressure in the central nervous system.  I’ve been told that the puncture is what causes the headaches – a little CSF will leak out no matter what.  But I’ve also been told (by witnesses) that “seriously a lot, dude” of spinal fluid was removed during week 1.  My thought (hope?) is that this is what is causing the brutal headache spell.

More to come as I figure things out.  And hopefully some new media this week.

*(Did not actually vomit).