Nick’s Inferno: Part 2 – Baltimore and the Blood Patch

Obviously, things were not getting better.  So I spoke with the on-call oncology doc at Hopkins around 4am on Friday and told him that I needed to come in and figure things out.  So there we were at 4am on a Friday, me on the phone with an oncologist, Emily drawing up sub plans for the day.  This is our life.

We got to bed around 5.  I expected a call at 8:30 or so – the time Jane usually gets into the outpatient clinic at Hopkins.  But I was kind of hoping that call wouldn’t come.  I needed the sleep.  Apparently the people up at Hopkins thought the same thing, so they waited for me to page them around 10:30. Jane called me back and told me to come on in, so I showered and headed up to Baltimore. 

I wasn’t in great shape – my headaches kicked in on the drive up to Baltimore and were about a “5” on the 1-10 scale by the time we got up there. But I wasn’t nauseous, and simply being stable enough to make it up to Baltimore was a substantial step.  I got up there, did some bloodwork, got weighed up (I had dropped nearly 10 pounds), and headed upstairs to the treatment room.  We quickly got some fluids started, I spoke with Dr. Ambinder (who introduced himself to Emily as “Dr. Jones” in an attempt to escape responsibility for breaking me like cancer never could) and the pages quickly went out.

As you know, I’m really, really involved in my own care, and I’m pretty persistent with people when I want something done.  But I had no idea what the hell was going on while I sat in the Hopkins treatment room.  This wasn’t because of a lack of communication, though.  It was just that I had come in on a Friday afternoon looking for something done, and the people with the ability to help me immediately only had to stall for a few hours before they could go home for the weekend.  I understood them. 

That’s when we started discussing the possibility of admitting me.  Which I hadn’t considered previously, but I was remarkably receptive to.  Because I was in hell.  I couldn’t function, and this had been going on for nearly three weeks.  So I was really in a “do whatever you have to do” mindset.  If that involved admitting me to the hospital, so be it. 

The problem was that getting the chances of getting the procedure I needed – an epidural blood patch – before Monday were not looking good.  And that would have meant a weekend in the hospital doing not much, then having the procedure on Monday, then hanging around until Tuesday for observation.  That was fine, but certainly not ideal.  I wouldn’t be in active pain, but I would be stuck in a hospital.  Either way, not fun.

They were seconds from taking me up to my room when Dr. Kathuria saved the day.  Really, a ton of people at Hopkins saved the day.  I was rushed through the maze of the hospital after 5pm on a Friday down to the back door of the Interventional Neuroradiology department (quite literally the back door…I think we briefly traveled through supply tunnels underneath the hospital).  Red tape was hacked to shreds, doctors, nurses and techs stayed late, and I finally got some relief.

***

I think this blood patch thing is just awesome.  To explain, I shall use a graphic:

So when the original lumbar puncture was performed, a needle is stuck all the way into the subarachnoid space.  That’s where the spinal fluid hangs out.  Once the needle penetrates that space, the spinal fluid leaks out and is collected in a tube, and the chemo drugs can be injected into the same area.  As you might guess, the needle must puncture the various membranes to reach the subarachnoid space.  Sometimes, those puncture sites don’t heal very quickly.  The result is a slow leak of spinal fluid.  Since the spinal fluid also surrounds the brain, the constant leaking leads to constantly shifting pressure around the brain.  The low pressure triggers headaches and everything else I’ve been dealing with over the past month.

The epidural blood patch fixes this problem by sealing the puncture sites from the spinal tap.  To do this, they use the most valuable substance on earth: my blood. 

The procedure is similar to the spinal tap, only its done while I’m in a CT machine.  The CT machine allows the doctor to hit the right spot with the needle, which is important because the epidural space is only about 2 millimeters wide.  So I lay on my stomach in the CT machine, and the doc cleans and numbs the injection site.  He then takes a needle and inserts it into the epidural space – just outside the subarachnoid space – using the CT images for guidance.  If he goes too deep, we’ve just compounded my problems.  If he’s too shallow we’re not solving anything. 

Once the needle is in the right spot, a nurse withdraws blood directly from of my arm, hand the syringe to the doctor, and the doc injects it right into my spinal column.  I roll onto my back for a half hour, the blood clots, and voila!  Punctures are sealed.

This procedure doesn’t “fix” the problem so much as it alleviates the symptoms.  The subarachnoid space needs to seal itself – the blood won’t be useful forever.  But it is quite effective, and the procedure went very well (meaning there was an even distribution of blood in the epidural space).  Dr. Kathuria’s talent was quite obvious. 

Of course, there’s the obvious question: Why didn’t I do this sooner?  I guess for the same reason I didn’t start chemotherapy in June.  I mean, hindsight is 20/20.  Doctors didn’t expect that I would have these problems, and its extremely rare for patients to get better and then worse after a spinal tap.  It’s also extremely rare to have the sort of reactions I did.  So “YOU’RE SPECIAL LOL” responses aside, this wasn’t what anybody predicted would happen.  Had I known back on March 25th that I would still be dealing with this crap two weeks later, of course I would have had this done.  But I try to minimize the amount of “spinal interventions” in my life. 

Following the procedure, I had to stay flat on my back to allow the blood to congeal.  So I laid on a stretcher until a couple folks from the cancer center came to take me to my room.  And away I went.  Flat on my back, on a stretcher, being wheeled through a hospital about six months after “remission” was accomplished.  Not what I expected, to say the least.

Nick’s Inferno: Part 1

[Ed: The rants in here are written from the point of view of “angry guy who feels miserable and is waiting in the ER.”  I was in the damn ER for about seven hours, so I had a lot of time to sit and think and I wasn’t in the greatest mood during those seven hours, as you might imagine.  So they’re italicized and set off from the rest of the narrative.]

It started on Thursday.

Actually, it started a couple weeks ago on Thursday. But my most recent trip into hell began last Thursday.  I felt crappy the moment I woke up, and the day progressed exactly like last Saturday: Severe headaches, didn’t go away no matter what I did, eventually triggered severe nausea which soon led to vomiting.  This led to me calling friends and doctors because my usual transportation (Emily) was doing Yoga-type things.  My reaction was this:

And so it was back to see my friends at the GW ER.  The good news:  I didn’t throw up as many times on Thursday as I did on Saturday, and they gave me one of those frequent customer cards like you get at Subway or Salad Creations.  Two more ER trips and I get my fifth trip free. 

The bad news: everything else. I don’t know what I did wrong this time, but I was not whisked into my own room.  I was sent to “registration.”  Which wasn’t so much “registration” as it was “vomiting in a bag while other people move at a glacial pace.”  But it inspired rant #1:

So I walk over to registration.  I declined a wheelchair because there is no freaking way I’m going in a wheelchair unless my leg is broke.  And my legs were really the only things on me that have been working the past few weeks.  So I’m using them. 

Anyway, I sit down in a chair and I sort of slump over the side in an attempt to stay as horizontal as possible.  My vomit bag is hanging out on the ground in front of me.  I’m the only one in a bank of like 10 chairs in front of the registration booths.  I don’t know what I looked like, since I wasn’t looking at myself, but I can’t imagine I looked very good.

And this woman comes over.  And sits down.  IN THE CHAIR NEXT TO ME. THERE ARE SERIOUSLY 10 CHAIRS THERE.  SHE SITS NEXT TO ME.  I’M SITTING IN ONE AND SLUMPED OVER ANOTHER, AND SHE SITS NEXT TO ME.  This blew every “peeing in a bank of urinals as a guy walks in and picks the urinal right next to you” moment in my life completely out of the water.  I don’t even remember what the woman looked like.  Just knew that she was wearing too much perfume.  She’s lucky she didn’t wear my vomit.

Anyway, I’m sitting there just praying that I won’t have to vomit in the waiting room.  Because seriously…that isn’t fun.  And I didn’t want to make things worse for everyone else there. 

But I wasn’t going to make it.  So I wandered to a relatively less-populated area of the GW ER and commenced stomach evacuation.  And cooked up rant #2:

After spending nearly a year of my life in DC, I’m convinced that everybody who works behind a counter in this city must take a course on “managing to look busy while maintaining a stunning indifference to the plight of the people you are supposed to be helping on the other side of the counter.”  You know…you’re at the bank, the airport, or the hospital, there are tons of people waiting in line, there are three people working at the windows or counters…and two of them are tapping away at the computer, or fake filling out forms, or on the phone, or doing ANYTHING besides saying “next!” and helping a member of the ever-growing crowd in front of them. 

I’m sure everybody has experienced this phenomenon at some point in life, but I really think it’s more prevalent here in DC.  I have no idea what the deal is.  And this is an incredible skill.  I sat there and puked my guts out for a solid five minutes in front of two of these women, and didn’t get so much as a passing glance.  I imagine there is some special university that these people go to.  And think of the final exam.  They have to put these people behind a counter and have volunteers do all sorts of crazy shit in front of them.  If the student so much as glances across the counter, they fail the course. 

I finally got called up to the registration window and gave them the same info I had given them on Saturday night.  Behind me, a man screamed about his back pain.  My buddy John, who had driven me to the ER, volunteered to give up his seat to back pain guy, who then sat down next to Emily (who had rushed over from her Yoga dojo) and proceeded to lecture her on the merits of Jesus.  So there I sat, watching the amazing woman in front of me punch things in on a computer way too slowly while some guy asked my girlfriend if she had enough Jesus in her life. 

Oh, but we weren’t done.  After registration it was back to the waiting room.  My name would be called shortly, they said.  As “shortly” turned into “two hours,” I mentally wrote rant #3:

All ER waiting rooms should have two doors.  Door #1 should lead you to the actual Emergency Room, where you have doctors and nurses and equipment and medicine and all that good stuff.  Door #2 should lead you to a giant pile of mud.

Here’s who goes thru door #1:  People with actual medical emergencies.  For example, a cancer patient who is slumped over two chairs and holding a bag of his own vomit.  Door #1 can also accept injuries, acute illnesses, real emergencies, and so on.

Here’s who goes thru door #2:  Pretty much every motherf***er who walks into the ER.  These people include the “daily drunks,” as one ER nurse put it, druggies, and anybody who has voluntarily put themselves in the emergency room through their own stupidity.  I’ll exclude accidental injuries, because fine, that stuff happens.  And maybe I’ll give people one freebie on the drunk thing. But other than that, go to hell.

Seriously, a good rule of thumb:  If you are sitting with others in the ER waiting room, and I can’t tell which one of you is having the medical emergency, you go thru door #2.  Again, I couldn’t see myself.  But I believe anybody who saw Emily, John and I could figure out that I was the one having an emergency.  Yeah, I get that many things happen internally. But if you’re not bleeding or in visible pain or having some outward signs of distress, there’s a good chance it can wait.

Here’s the biggest difference I’ve noticed after 13 hours in the ER in the past week:  When a doctor or nurse asks, “So what brings you in here?” how long is the answer?  Mine is several minutes long.  I give them my medical history, my treatment history, the drugs I’m on, and an overview of what led to my appearance in the ER.  This, you would think, would be standard practice when a doctor asks a patient why they have come to the Emergency Room.

That is not the case.  Virtually every doctor-patient conversation I overheard (we’re packed in there pretty tight) involves a patient who makes reference to some “pain,” and then a doctor asking a billion questions.  It’s as if the patient has no freaking clue how he ended up in the ER in the first place.  Take this conversation, for example:

     Doc: So what seems to be the problem/

     Patient:  My chest hurts when I breathe and I’m coughing a lot.

     Doc:  Do you smoke?

     Patient:  Yeah.  Bout a pack a day.

     Doc:  Do you use any drugs?

     Patient:  Just marijuana.

This isn’t news to anybody who has spent any substantial amount of time in the ER.  But on top of my relatively brief ER stints, nurses *love* to vent to me.  And it’s the exact same story every time.  I’m not going to get in a long discussion about Health Care in America, but I’m convinced we could solve a substantial number of our health care “problems” if people just took care of their own shit.

Anyway, the fact that I had to lay there in agony in the GW ER for two hours because a bunch of damn drunks, addicts, and people using the ER as their primary care physician were clogging up the joint really got to me.

Finally, mercifully, my name was called and I was led into the ER.  Where I waited some more.  And holy hell, what a zoo. I have no idea what the deal was last Saturday when I was whisked through the ER with amazing speed, but Thursday night, everything was a mess.  I have a ton of respect for the doctors and especially the nurses in these places.  But I can’t help but think there has to be a better way to go about providing “emergency” medical care.

The good news was that my vomiting had subsided, and I didn’t puke once in the actual ER (this is what qualifies as “good news” these days).  But I was substantially more dehydrated this time around, so they started the fluids in a hurry.  I got the usual drug cocktail of dilaudid and zofran, and things quickly settled down. 

I saw several doctors once again, but there wasn’t much anybody could do.  We discussed doing a head MRI, but nobody was really excited to scan my brain for the third time in a month.  The docs did some neurological tests (checking my limbs, facial muscles, looking for imbalances, pupils, etc.), but everything was normal.  I got a couple bags of fluids, we made several vending machine runs, Emily went to 7-11 but the door was locked and she saw a rat so she ran away.  We sat there for seven damn hours, finally leaving around 3:30 in the morning.  And no applause.  But when I left the ER, I felt as good as I have in three weeks.  So at the very least, I was hopeful that that would continue.

But first, I had to get up to Baltimore and demand some answers. 

Michigan, have no fear: Debbie Stabenow will save your pickles!

[Ed: Great progress today as I was able to read the news for the first time in a few weeks.  I honestly have not been able to read much since March 25 or so.  Of course, reading the news produces an unfortunate byproduct for me:  irritation.  You all know this.  Even in my crippled state, I’ve come across some good stuff over the past few weeks.  I’ve just been too weak to write anything. 

So consider this a therapeutic exercise, and bear with me as I rant about Debbie Stabenow’s pickles.]

Hitting the front page of detnews.com this afternoon was a piece by Senator Debbie Stabenow’s Press Secretary/Detroit News Washington Bureau reporter Dave Shepardson.  And be patient, Detroiters.  Help is on the way!

U.S. Sen. Debbie Stabenow says she is working with officials of Detroit's Eastern Market to help them increase the number of days the outdoor and shed merchants are open for business.

Up to 40,000 people visit Eastern Market's Saturday market — a local food district with more than 250 independent vendors and merchants processing, wholesaling and retailing food. At the heart of Eastern Market is a six-block public market in business since 1891.

Businesses in the permanent shops and stores surrounding the weekend market area are open weekdays, but the sheds and open-air parts are not.

"Why should Eastern Market only be open on Saturday? Why not Sunday? Why not every day?" said Stabenow, D-Lansing, at an appearance at the Detroit Economic Club in Southfield. "They are looking at expanding."

Stabenow became chairwoman of the Senate Agriculture Committee in January.

Eastern Market Corp. president Dan Carmody didn't immediately return a call seeking comment.

Stabenow also wants to ensure that more food processing is done in Michigan — rather than shipping the raw fruit to other states.

And she is hopeful of convincing Whole Foods to locate a store in Detroit, having had multiple conversations with Whole Foods CEO Walter Robb. "They are very interested in Detroit," Stabenow said.

The market offers fruits, vegetables, fresh-cut flowers and transplants, eggs and dairy products, homemade jams, maple syrup, locally produced specialty foods, pasture and grass-fed meat and even an occasional goose or rabbit.

Michigan has more than 8 million acres of farmland generating more than $7 billion annually and it helps support one out of four jobs, Stabenow said. The state has the most diverse selection of crops, except for California. Michigan grows "everything — except for cotton, rice and peanuts."

Michigan is number one in producing pickling cucumbers, but not number one in processing pickles.

"We are shipping the cucumbers to plants in other states and they make pickles and they put them in jars and we get them back here," she said. "My question is, why can't Peter Piper process pickles in Paw Paw? We can."

She noted that some companies, including Better Made and Kellogg's, process Michigan crops.

She noted that Detroit is likely to have farms soon.

"I told the mayor I'd never thought I'd be helping him from the Agriculture committee," Stabenow said. "That's an important part of Detroit's future."

First gripe:  I’ve edited this article to remove anything that came directly from Debbie Stabenow's mouth.  Here it is:

Up to 40,000 people visit Eastern Market's Saturday market — a local food district with more than 250 independent vendors and merchants processing, wholesaling and retailing food. At the heart of Eastern Market is a six-block public market in business since 1891.

Businesses in the permanent shops and stores surrounding the weekend market area are open weekdays, but the sheds and open-air parts are not.

Stabenow became chairwoman of the Senate Agriculture Committee in January.

Eastern Market Corp. president Dan Carmody didn't immediately return a call seeking comment.

The market offers fruits, vegetables, fresh-cut flowers and transplants, eggs and dairy products, homemade jams, maple syrup, locally produced specialty foods, pasture and grass-fed meat and even an occasional goose or rabbit.

Michigan is number one in producing pickling cucumbers, but not number one in processing pickles.

Who needs press secretaries when you have reporters!*

But more importantly, here are the things Debbie Stabenow – a United States Senator and a career politician who lives and works in Washington, DC – is messing with according to the article:

1. The operating hours of a largely private market with over 250 vendors in Detroit
2. The optimal amount of food processing done in Michigan
3. Whether a grocery store will open in Detroit (a Whole Foods, which the average Detroiter will just love and can definitely afford to shop there!)
4. The disparity between cucumber and pickle processing in Paw Paw
5. The number of farms in Detroit

The article ends with an ominous line as the chairperson of a national Agriculture Committee tells the mayor of a city in her district that she will “help him.”  You know…presumably with funds that come from the rest of the country. 

Aside from my initial reaction – why the fuck is Debbie Stabenow involved in any of this – I’m not even that mad about this part.  She’s the chairperson of the Senate Agriculture Committee and has spent damn near every waking moment of her post-academic life toying with and controlling the lives of others.  She can’t help herself.  The only world she has ever known is one in which she pushes buttons and pulls levers and spends other people’s money and bans things.  She is, to paraphrase Adam Smith, a woman of system.  It’s not even really her fault.

I’m more irritated at the fact that she gets this slapped on the front page of a major Michigan newspaper:

See it down there?  It’s to the right of the story about the another do-something(!) Detroit politician who bribed her way into prison.  Two stories below the story about the government agents who shot a little girl in the neck because they were trying to look cool for the teevee.  And damn, Detroiters are just going to love riding the light rail down Woodward to the Whole Foods!

Along with an article that is quite literally just a press release for a politician.  I mean seriously.  Shepardson doesn’t even answer the very non-rhetorical questions Stabenow asks in the damn article.  Why isn’t Eastern Market open on Sunday or any other day?  Why aren’t pickles processed in Michigan?  And if Eastern Market is “looking to expand,” Whole Foods is “very interested” in Detroit, and Detroit is “likely” to have farms soon, why on earth does that stuff need the blessing of a United States Senator to happen?

I'll tell you what:  I’ll meet Stabenow halfway on this.  I’ll give her credit for all this: expanding Eastern Market, grocery stores in Detroit, pickles, whatever she wants.  I’ll give her the benefit of the doubt and give her all the credit. 

So long as she takes equal responsibility for the fact that since she ascended to the Michigan House in 1979 (and then the Michigan Senate, the US House, then the US Senate), Michigan has been flushed down the shitter.  Hell, since she became a Senator in 2001, Detroit lost nearly 25% of its population years after it started hemorrhaging its population.  You want to meddle in all sorts of shit, fine.  Then take responsibility for it.  And admit that the only reason you’re still in office is because things have become so awful under your leadership, most of your angry constituents have chosen to leave than hang around and vote you out. 

Something tells me I won’t be seeing that article on the front page anytime soon.

*[I’ve been hard on Shepardson here, so let me say this:  I do understand the concepts of word counts and editors.  I also understand that some journalists are employed to report on what politicians say and do, and I recognize the importance of that given the power these people hold.  I guess it’s possible that Shepardson’s editors have told him that he is to write short word count articles that include only statements from politicians about Detroit and Michigan-related issues, and that in no way is he to dig any deeper into any of those statements.  Maybe that’s not his job, and maybe those are orders that come from the top.  If so, then most of the fault lies elsewhere. 

But this type of skin-deep, cheerleader-journalism is toxic.  Sure, Whole Foods and an expanded market and more pickles might be awesome things.  But articles like these that double as fanfare simply reinforce that it is politicians – not citizens, not the people on the ground, not the day to day people who work at Eastern Market or Whole Foods – who are our saviors.  Michigan has sat through decades of this press-release economic crap (seriously, look at them).  How’s that going for everybody?]

UPDATE: Just saw that the article was updated and expanded.  Includes some quotes from the Eastern Market Corporation President and adds more Stabenow:  She indeed “helped the market secure funding from the U.S. Agriculture Department.”  Also adds a weird bit at the end where she’s trying to figure out how much ethanol should be in your gas tank.  This woman is amazing.

I don’t know

Sat here for a while and couldn’t come up with a title for this post, so I just went with that.

Anyway, rough couple days. I was back in the GW Emergency Room on Thursday night going through the exact same stuff I went through last Saturday, only the ER was considerably more packed and I was in there for a much longer period of time which inspired a substantial mental rant that I might convert to prose and post at some point in the near future.

On Friday, I was admitted to Johns Hopkins where we did a lot of stuff and I got to spend some time as an Oncology inpatient.  This was a less-than-fun experience.

But I’m home now, able to eat food in small portions, and I’m writing this post while sitting up.  I’m still in pretty rough shape, but things could be a lot worse, which hasn’t been the case recently.

I’ll get around to explaining my last four days soon.  Hopefully I’ll continue to improve and that task will become easier.  For now, I’m going to leave you with this picture of Emily putting on my hospital socks at GW on Thursday night:

I’ll post more if she doesn’t murder me before then.