Archive | February, 2014

A Cold or Cancer? Things That Run Through My Head

27 Feb

Common Cold

 

I have a cold—sniffles, a little tired, a little bit of a cough, and a general feeling of malaise.  A cold.  I know that I have a cold because my daughter had a cold.  My wife had a cold, and I have the same symptoms that they had.  Its symptoms obvious, the path of transmission clearly established, and my years of experience with colds all indicate that I have a cold.

And yet, since I am awaiting another round of tests to see if I have cancer, every symptom of my cold is now a symptom of cancer.  Fatigue (most cancers) the cough (lung cancer), and the general feeling of malaise (all cancers) even the aches (metastatic bone cancer) all of these symptoms are terrifying hints that I might have cancer.  Never mind that this feels just like a cold.  Never mind that it’s been going around my home.  Never mind that I’ve been much more tired in my life, or that I’ve had no fevers, or that it would take an act of Congress for me to lose even an ounce off of this Santa Claus-like frame.  It doesn’t matter.  The thought of cancer has seeped into my consciousness, and while I rationally know that I have a cold, my irrational self—the part of me that checks behind doors in the middle of the night, or knocks on wood for good luck, or has to walk a certain number of steps before each play during a successful New York Giants’ offensive drive—that self has decided that this cold is cancer. 

There’s just no reasoning with me, either.  I know that this is, as Stuart Smalley would say, “stinkin’ thinkin.’”  I know that I am creating a frightening and, perhaps, damaging internal narrative.  I know I’m just plain ol’ nuts.  But I also know that just a few weeks ago I was cruising along with a pretty good sense that I did NOT have cancer, and here I am being tested for it…..AGAIN!  What is worse, I still have to wait two more weeks for the procedure and God knows how long for the results! And so, in the absence of any real knowledge, I have manufactured a story….A pretty crappy story, I’ll grant you, but a story just the same. 

Somehow I’ve got to come up with a new tale, a new way of thinking about my body and its sensations.  I have to move forward in the belief that I am well and that even bad news will lead to treatment and cure.  I have to get my courage and determination back to where it was when I was certain I had lymphoma….or I could just get over this cold.  That would be nice, too.

Stay tuned.

WTF?

20 Feb

WIN_20131105_064915

And so it begins again.   Another doctor’s office, another computer screen, another look at my scans, and another person tells me I probably have cancer.  WTF?  Those of you following this rollercoaster ride (by the way, I hate rollercoasters) know that I have been told that the mass in my chest was a cyst, then lymphoma, then a benign tumor.  You know that I wanted to see a surgeon to see if he could easily remove this thing from my chest and let me move on with my life.  

So I saw a surgeon.  Good guy…a Brooklyn native, trained in New York, but who’s been out here a long time.  He brings his dog to the office (which I really appreciate).  He’s very low key.  He’s won numerous awards for his surgery and compassion.  He’s even worked on folks from my museum—lots of them, actually.  And so his opinion matters….damnit!

After looking at my scans, the guy explained to me that my biopsies could not have been conclusive.  He believes he’s looking at cancer, likely lymphoma, and that there is only one way to know for sure…we need a lymph node…end of story.  He wants to do a procedure called a mediastinoscopy (if you can stomach it, here is a video of the procedure). Basically it’s an outpatient procedure (under general anesthesia) to remove some lymph nodes from your mediastinum (here’s the wiki entry on the mediastinum).  It’s invasive.  More invasive than I would like, but far less invasive than removing a big tumor from my chest.  Also, it is likely more conclusive….at least that’s what this guy says, and in fairness my oncologist would love to see this done, as well.  It might just end my rollercoaster ride, OR it can start a whole new one. 

I am not sure what to call this blog anymore.  When this journey began, the blog was called Cancer: My New Adventure.  Then, when it seemed that I did not have cancer, I changed it to Dodging Bullets.  But one of my Facebook friends, a long time family friend, had suggested another title, one that I think captures my condition and perhaps the human condition.  He suggested that I call the blog Limbo.  And I suspect it’s time to make a change.

I continue to feel fine, though perhaps more emotionally fragile than I felt even a few hours ago.  I continue to value and cherish the interest and concern of every one of you who reads this blog and supports me in this insanity (and even those who don’t read it).  And I continue to remain simultaneously confused, panicked, anxious, crazed, and cautiously optimistic.

As always….stay tuned.

Riding the Roller-coaster in HMO Land

4 Feb

Roller Coaster

I’ve been meaning to post for about a week now.  I wanted to write about how the vagaries of HMO-land, coupled with my bizarre condition and my own craziness, set me off on an emotional roller-coaster, a ride that seemed to have no end in sight.  My rather sluggish blogging reflex, though, delayed my response and has, in some sense, made my first story seem…superfluous.  Since last week things have become clearer.  I see the end of the ride, or at least an end to this most recent ride.  I have some clarity, some sense of where I’m headed next, some…certainty….not a lot of certainty, mind you….just some…a bit. And that certainty is, at once, reassuring and frightening. I have stepped off of one roller-coaster and gotten on to another.  As with all thrill rides I am curious, exhilarated, scared, and, of course, nauseous. Let me explain.

Last week I found in my mailbox a letter from my medical group, a letter that  surely held my referral to a consultation with a thoracic surgeon—an E-ticket (for those of you old enough to know what that phrase means)* for the next adventure in my ongoing medical saga.  My stomach dropped (as it does on all E-ticket rides) and I was filled with a sense of apprehension as I opened the letter, deathly afraid that I would soon meet with a surgeon and learn about the operability (or perhaps inoperability) of the benign mass in my chest.  I know this sounds counterintuitive.  After all, I wanted to see a surgeon.  I’ve been saying so for several months now.  But facing the reality of that visit filled me with a fair amount of dread.  You see, while I am very interested in learning if this thing can be removed, I am, perhaps, a bit less interested in actually having surgery.  The idea of surgery is scary to me.  It involves a level of trust and a loss of control that I am uncomfortable with.  Surgery is risky and filled with complications.  I mean I do want to get this tumor out of me, but I would prefer it if it could be done by a chiropractor or faith healer.

As it turns out, there was nothing to fear.  The letter was actually a bureaucratic bulletin alerting me to the fact that my medical group was going to delay their decision for up to 45 days while they determined if my doctor had tried more “conservative” means of treatment before resorting to a surgical consult.  Relief washed over my body as I realized there would be no surgical consult soon.  Someday I would see a surgeon, sure, but not today, and not tomorrow….phew!  Almost immediately, though, I began to get a little peeved.  “What the hell is wrong with these people?” I wondered.  “More conservative treatment?  Like what….talking the tumor out of me?  Perhaps I would get to see those faith healers after all!  One thing’s for sure, though, I’ll never see a surgeon, now!”

I realize how nuts all this sounds, but that’s how I felt.  Part of my reaction was, of course, my own special brand of crazy, but part of it also comes from some insight into HMOs and how they operate.  A colleague of mine is a trained nurse who once worked on specialist approvals for some HMO here in California.  Months ago she explained to me that once you pass a certain level of care, all requests are initially delayed or denied.  It’s just a game these folks play.  Sometimes it’s a medically sound game, and other times not.  And that’s what pissed me off, really.  I had no idea whether their delay made any sense or not.  Did they really need proof of my doctor’s efforts to try more conservative approaches to remove my tumor, or were they just messing with me?  And if they were, well damn it, don’t they know that I want to see a surgeon….sort of?

Nine days after receiving the offending missive about the delay, I got a call from a surgeon’s office.  “Mr. Greenberg, We’ve got a referral for you, and we like to call as soon as we get them so you can see the doctor right away.  What is your schedule like this month?”   Well, apparently my schedule, and the surgeon’s schedule (should I say “my surgeon?”) came together on February 20th, and so I have my consultation appointment.  Hooray….and shit!  Later this month I get to do the thing I’ve been simultaneously wanting and not wanting to do.  Amy and I will sit in some doctor’s office and make small talk while we wait to hear what the next step in my journey might be.  We’ll listen intently and ask lots of questions.  If the doctor is a jolly sort, we’ll make a few jokes.  If he’s more serious, we’ll be serious too, and then when it’s all over, we’ll go on with our day while we try and figure out our next move.  Naturally, I will share the details in this blog as soon as I can.

Stay tuned.

*For those of you unfamiliar with the phrase “E-ticket ride,” please see the following link.

http://themeparks.about.com/od/disneyparks/g/E-Ticket-Ride.htm