Tag Archives: Surgeon

Sisyphus and the 8 cm Tumor

20 Mar

Sisyphus

 

I don’t want to bury the lead, so….final pathology, sarcoid tissue, nothing else.  I have sarcoidosis, the type that typically presents in people of Northern European descent (it can be a very different disease in African-Americans).  I will likely have to be watched the rest of my days to make sure that I don’t exhibit any symptoms and to be sure the disease doesn’t spread to my organs… so, that’s good, I guess.  Still, this post is not entirely about my diagnosis.  Maddeningly, it is also about the large, bizarre, and to my knowledge, benign tumor sitting in my chest, as well.  And so this is also a post about frustration.

Midday on Tuesday I called my doctor’s office to check in on a few things.  My protective bandages had begun to give way a week earlier than I expected.  I wanted to see if I could return to aspirin and fish oil, both of which I stopped taking a week before surgery.  And, of course, I wanted to see if the final pathology had come in.  About 6:30 that night I got a call from my surgeon’s office.  Apparently the loss of the bandages indicates, and I quote, “young oily skin as opposed to old dry skin”… (sexy).  I can get back to aspirin and fish oil whenever I want.  And the pathology came back as sarcoid tissue, nothing else.  Whew, what a relief!  But then I was told that my surgeon would present my case to the thoracic tumor board on Wednesday (which is not, in fact, a board composed of tumors, but rather a board of doctors who specialize in disciplines that frequently see and treat tumors)..  “What?! I thought I was done.” I thought it was time to move on to a rheumatologist or some other specialist to begin my new adventures in Sarcoidosis-land (Sarcoidosis-ville?  Burg?  Thoughts?).  “Why does he feel the need to discuss my case even further?  What is the point?”

“Well,” my surgeon’s wife said, “everyone just wants to make sure they’re not missing something.  You’re a young guy with kids.  We want to be careful and make sure we’ve considered every possibility,” or words to that affect. 

“What else could they be looking for?” I asked. 

“I don’t know,” she said. “Don’t think about this as a bad thing.  Think about this as a group of doctors who are really looking out for you.”Easy for her to say! I’ve been at this for 5 ½ months.  I want some closure, some sense that this chapter in my life is over and a new and better one has begun. 

Interestingly enough, one of my rabbi friends (like I said in my last post, I seem to know a lot of rabbis) predicted that something like this might happen.  I was talking to him just before my surgery.  I was lamenting how meeting my surgeon and being told, again, that I may have cancer had unmoored me.  I was stunned at how fragile I was.  “All of that work, I did, the eating better, the meditating, the Tai Chi, that was all bullshit,” I said.  After all, one stressful visit to a doctor and I had ceased to engage in most of those activities (See my previous post, Getting Back Up on the Horse).

 My rabbi friend reminded me that it was natural for me to feel beat up at that moment.  “Besides,” he said, “you don’t do all that work (the Tai Chi, the meditating, etc.) to keep from being knocked down.  You do it so that you have an easier time getting back up.  You do it for your wife and daughter.  You do it to deal with the next doctor’s report.”

“Wait! What do you mean the next doctor’s report?” I asked.

“Look, Erik, the way this thing has been going for you, I just don’t imagine that any report will be simple or straightforward.  They’ll probably be some new thing for you to deal with.” 

I guess he was right about that.  I mean, even if the tumor board said gey gezunt, which as you will see they did not, I will likely spend the rest of my life watching and being watched.  Doctors will watch my tumor, my new condition, my weight and cholesterol (which they would have watched anyway), my blood pressure, my blood sugar, and on, and on, and on.  In July I turn 50, and apparently 50 is the colonoscopy birthday…so there’s that.  And so I do the work, the re-formation of my life and lifestyle, to cope with all of these things and maybe live a better life than the one I lived before this whole mess started.

This morning the surgeon and I sat down to discuss the deliberations of the tumor board.  I’ll keep it simple.  They have no idea what the tumor is or its essential nature (benign or malignant).  They have no idea if it will grow or shrink, and so they recommend I have it surgically removed…probably.  Oy!  Where does that leave me? Basically where I was in November, which is to say I will get a scan in June.  If the tumor grows, we get it.  If it shrinks, we finally have an answer about its nature (benign).  If it stays the same, then I am forced to decide whether or not I have surgery. 

My sense of limbo continues, or perhaps not.  After all, limbo is a state between heaven and hell, and while I don’t really feel damned, there is a certain sense of Sisyphean condemnation in the way I am asked to expose my tumor to testing again and again, and when I come to the doctors to understand what the Oracle of the Pet Scan or the Mediastinoscopy has to say, I am basically told the same things they told me before the last procedure. I’m at the bottom of the hill….again…just me and my tumor…and all of you, of course.  The truth is that without your support this experience would be unimaginably more difficult.

So this is where things stand.  I live to scan another day and to try and live a better life with my brief reprieve from medical experimentation.  I cannot thank all of you enough for your prayers and good wishes.  I continue to need them.  Perhaps I have always needed them and will need them forever.

Stay tuned. 

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My Promising Post Surgery Post

12 Mar

As most of you know, I had surgery today to extract some lymph nodes to determine once and for all whether I had cancer.  You know I was scared out of my mind at the prospect of general anesthesia AND the possible pathological findings. of my procedure.  I am happy to say that on both counts, things look promising.

I simply will not say I do not have cancer until I have heard the results of the lymph node biopsy (which I should learn on Friday).  Too many times in the past six months I have been led astray by embracing good but incomplete data.  The process has been emotionally draining, and over the past few weeks, downright emotionally devastating, as well.  I have been so terribly frightened, lately, so utterly besides myself as I tried to reconcile the competing theories of numerous talented and caring medical professionals, that at times I really did feel like I was in the middle of a horrible nightmare.  Indeed, if Wes Craven would really like to write a horror story, write one about a guy who goes to the emergency room for kidney stone pain and then is routinely told for almost six months that he probably has cancer.  Scary shit.    

So I will hold off making any of my own assertions until some time on Friday.  In the words of my surgeon, though, it looks like sarcoidosis (not cancer), and he saw nothing to indicate any type of malignancy.  Promising, but I will wait for the proof.  So please keep sending your fabulously good thoughts and prayers my way, and I promise that on Friday I will share, what I hope to be, the good news.

As for your good wishes, they surely worked, and I am grateful to each and every person who reads this blog and wishes me well.  You have helped, and continue to help, me through an incredibly difficult and frightening time in my life.  I honestly believe that your good wishes, which I was able to read in the surgical prep room right up until they wheeled me in to OR, made me stronger, and helped me to better tolerate the experience of general anesthesia and thoracic surgery.  Amy and I are discussing ways to thank you.  Indeed we are thinking about a three day party (kind of an open house) to have an opportunity to offer some hospitality and to hug each and every person that can make it.  For those of you who live a long way off…we’re working on that, too.  

I hope that Friday I can share glorious news, which is to say that instead of cancer I have an autoimmune disease (the bar for what I consider lucky is still quite low).  Until then, THANK  YOU, THANK YOU, THANK YOU.

As always, stay tuned.

Surgery Next Week…Oy!

7 Mar

WIN_20131105_064915

I’m having surgery next week.  There, I said it.  I haven’t been keeping my surgery a secret, mind you.  After all, I mentioned something about it on this blog almost two weeks ago, I think.  Still, I haven’t blogged about the fact that surgery is scheduled, that I’ve done my pre op visits and tests, and that this coming Wednesday, March 12th, at about five in the morning, Amy Emma and I will pile into a car, drive over to St. Joseph’s in Burbank, and I will undergo minor thoracic surgery.  Sounds funny, huh….minor thoracic surgery.  Kind of like fighting a little war, or getting a little pregnant.  But I digress.

Like I said, I have yet to blog about this, and that is unusual for me, since I have blogged about almost every procedure, every doctor’s visit, everything since this whole mess began back in late September.  And yet I’ve been electronically quiet about this.  Why is that? 

A few reasons come to mind.  The first is that I have been REALLY sick the past two weeks.  My family has been clobbered with a brutal cold, and I am just now emerging from  a dark hole of coughing, sneezing, nose blowing, and feeling crappy.  Indeed, it is conceivable that if I am not a lot better by Monday (which I think will happen) we will have to delay the surgery.  Also, I’ve been very busy working on a digital history project for my friends at UCLA’s Center for Jewish Studies (here’s a cheap plug…check it out). 

But I think the reason I have been so quiet, to date, about my upcoming procedure is that I am scared…REALLY REALLY scared.  I’ve never had surgery under general anesthesia before.  Sure, I’ve had a wisdom tooth out under sodium pentothal, and that was pretty cool, but I have never been deep under with a tube down my wind pipe to assist in my breathing.  Never ever.  And I am really scared about that.  Also, I am really scared about what the doctor may find.  Once again I find myself asking God that, if I am not completely healthy, at least please let me have one of three or four very curable cancers. Once more the bar for what I consider lucky is incredibly low. So, like a little kid frightened by the shadow in his closet, or the creaking under his bed, I have become silenced by fear.  Until now, of course.

 Something happened in the past day or two that has made me want to share my story again…to let the good people of my internet village know where I am and what’s happening to me…to ask for your prayers and support, and to let you know how much I have appreciated your support these past 5 ½ months.  I need it again. 

And so please know that I am having surgery Wednesday morning.  It’s outpatient, and so I hope to be home midday (maybe later).  As always I will let you know how I am doing, and I will share what I learn as I learn it.  If you’re praying people, please pray for me.  If you’re not, please just send me your good wishes. 

Thanks for your indulgence, care, and concern.

As always, 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