Tag Archives: Dealing With Health Issues

My Return to Scan-Land

23 Nov

PET SCAN

This used to be a blog about health and well-being, right?  It is again, for at least the next few posts.  Two weeks ago, the calendar in my head clicked off a reminder about my impending biannual PET scan, and I got the scheduling process underway.  A quick text to my doctor was followed a few days later with a reply apologizing for the delay and an assurance that my paperwork was being processed.  Then, while I was in the middle of composing a lengthier post complaining about the ways that my medical group tends to delay these decisions, I got my approval in the mail.  All that remains is the scheduling, my abstaining from carbs for 24 hours, the injection of radioactive sugar into my bloodstream, the scan itself, and, of course, the results show. I’ve begun my journey down the rabbit hole into scan-land, and I won’t come out the other end for another week or so at the earliest.

When I first started writing this post I tried to craft some cute and funny stuff about the role these tests play in my life and about the frustration of knowing that no matter how I feel, I will have a scan of my thorax and abdomen every December and July for the rest of my life.  But you know what?  There’s nothing cute and there’s nothing funny about that.  It’s frightening and anxiety producing.

I’m not sure what to say concerning my expectations or feelings about what the scan may find.  I feel pretty good these days, but part of me, no doubt the Jewish part, is afraid to say anything positive or hopeful about the process for fear that the evil eye will sense my confidence and curse me with bad news.  What can I tell you? This is how my mind works.  And yet I can’t just run away from this and not do the procedure. Can I?  My, now, semi-annual PET scan is one of the few moments in my life where I actually face my fears and do the responsible thing.

I’ll keep you posted about the progress and results.  If the past is any prologue, I will find great calm and comfort in the good wishes of my many friends who read this blog or at least take a look at my status on Facebook.  I continue to appreciate your readership, friendship, and care.

And as always…stay tuned.

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I Live to Scan Another Day!

18 Jun

Erik Hat

 

For those of you who may have missed my last post, I announced that I was due for a PET scan and would receive the results this week.  Well, the results are in, and there is no surgery in my immediate future.  As my oncologist said, depending upon the angle that you look at it, my mass may have grown a millimeter.  And the only time he would recommend surgery is if I am not feeling well, or if the growth is significant (say, 7mm in 6 months).  I feel fine.  There is limited growth–so limited that my Dr. tells me there is no change in my mass at all–and so we do this all over again in 6 months.  Tonight, Scantasia, an evolving tradition in my family where we celebrate good scan results with a meal out and  the heaving of yet another heavy sigh of relief.  In all likelihood this will be followed by a brief, personal moment of panic and a tortured consideration of my own mortality, which seems to follow every one of these events (perhaps a mild form of ptsd).  I’ll write about it, and other less creepy stuff, too.  Thanks for reading.  Thanks for your continued good wishes, and thanks for your presence in my life.

 

As Always, stay tuned.

 

E

Stuck in the Middle

9 Jun

Scarecrow Both Ways

 

After weeks waiting for my doctor’s referral to be approved,  I finally made my appointment for my June Petscan, Thursday, June 12th first thing in the morning.  Also in June I will see a rheumatologist, make a second visit to a pulmonologist, likely see my oncologist (who referred me for the scan), and make weekly visits to a physical therapist (to help ease the effects of some pinched nerves in my neck).  It seems that as I approach my 50th birthday, I have become a regular consumer of the health care system.  I have become one of those people who likely costs the insurance company so much money that I require younger, healthier Americans to sign up for insurance to bring some financial stability to the system (that’s how insurance works, folks, no matter how you feel about Obamacare).  I am not sure what to make of this phenomenon.  I have always associated having numerous medical professionals on speed dial with old people, but I am surely not old.  Am I?  As I noted above, I have not even hit 50, yet.  My birthday is July 14th (yes, Bastille Day for all of my Francophile friends).  I haven’t even taken the somewhat obligatory step of joining the AARP.  And yet my life is filled with regularly scheduled doctors’ visits, with minor aches and pains, with a sense of nostalgia for 1980s and 1990s, with numerous regrets about roads not taken, and everywhere I go, people call me sir. No, I’m not old….yet, but I think that I have hit middle age.

It’s an odd term, yes, middle age?  At the very least our use of the term, which we generally employ to describe men and women in their fifties and sixties, is either wildly inaccurate or incredibly optimistic.  If I am, as Dante wrote, “midway along the journey of our life,” then I should be about 100 years old at journey’s end.  I’m not sure anyone reading this blog believes that I will hit the century mark.  I don’t really feel like I’m in the middle of anything, except maybe my career.

Instead, I feel very much like I’ve come to the end of numerous life circumstances and the beginning of others. Two years removed from my hooding ceremony, I am no longer a graduate student, and what is worse, most of the young historians I met in grad school have also received their Ph.D.s. And so even my younger friends have come to the end of one road and started down new paths.  On the other hand, this year I have been on television a bunch of times as a, so-called, professional historian. In fact, just this past week I taped two episodes of a new show, and so perhaps I am on the cusp of becoming one of those talking heads we see when the history channel actually chooses to broadcast shows about history.  Who knows?  I feel as if I am coming to the end of my time as a football fan.  While I love the game, I am not sure I can continue to watch young men destroy their brain function for the sake of my entertainment.  I have tried to take a look at other sports and see if I possess a shred of the passion that I have for the NFL in general and the New York Giants in particular.  Truth is, though, that I am not drawn to any other sport in the way that I’ve been drawn to football for the past 45, or so, years.  Perhaps I will dedicate my Sundays to something less competitive.  And, of course, as Emma enters her senior year, Amy and I are fast approaching the end of our time with a child at home, and will soon begin our lives as “empty-nesters.”  Thankfully we have been preparing for this development for years.  While Emma’s time in summer camp may have been a kind of preparation for adulthood, it was also an opportunity for Amy and I to see how we got along as a couple, and I am happy to say that most of the time I don’t annoy her too much.  

Indeed, much of the past year, which I count from the death of my father-in-law last May through Emma’s completion of 11th grade, has been a year of endings and beginnings. As I just noted, last May we lost my father-in-law.  This past fall my mother sold her house in Harrison, New York—once the center of all social and family life for countless friends and relatives.  Just recently my sister has ended her lengthy employ with a well-known department store chain.  Yet another niece has finished high school and is on to college (USC, no less….the horror). And Amy has taken the bold, but very attractive, step of abandoning dyes and embracing her gray hair.  Endings and beginnings seem to hit me wherever I turn. 

Perhaps that’s the real meaning of middle age, not that we’ve reached our chronological midpoint, but rather that we’ve reached a turning point, a moment when one a set of circumstances that have come to define our adult lives come to an end, and yet we have not fully embarked on, or embraced, our new paths.  We’re like Dorothy, standing in front of the scarecrow, asking for directions.  And as those of you familiar with the movie already know, his assistance is none too clear….”Some go this way, some go that way, and of course some go both ways!” Very helpful.  Nevertheless, that’s how I feel these days, stuck in the middle of massive change, but uncertain which way to go, which path to follow, and with absolutely zero sense of where any one path may lead.  That must surely be the definition of middle age. And by the time I get it all figured out, I’ll be an old man, which is a lot better than the alternatives, I guess, but it’s still frustrating.

Well, maybe the AARP will be able to explain all this stuff to me when I join, next month.  Who knows?  What I do know is that Wednesday I eliminate all carbs from my diet, Thursday morning I drive over to the scanning place—a place I’ve been to so many times that they actually remember me—then I take my radioactive sugar, get undressed, climb on a gurney, and let some big electronic doughnut scan my body.  Great fun!  Once I know the results I will, of course share them with all of you.  Until then, I hope that all is well for my many friends, family, and casual readers of this blog. 

Thanks for reading, and, as always….stay tuned.

Rome Wasn’t Built in a Day.

13 May

Rome

 

About eighteen years ago I quit smoking, and I haven’t had a cigarette since.  To be clear, I didn’t quit cold turkey.  The whole process took about three years…three difficult, challenging years.  I quit.  I started again. I tried hypnosis.  I cut back to smoking one or two a day.  Over time I replaced my addiction to cigarettes with other addictions (gum, cookies, etc.,) and finally I quit altogether…sort of….  It still took about six more months after quitting the actual act of smoking to give up my dependence on nicotine gum—which gave me all the pleasure of a nicotine rush while still allowing me enough wind to walk up a flight of stairs.  Still, eventually I did quit, and I haven’t had a cigarette or any nicotine products for some eighteen years.  I say all of this not to brag about my non-smoker status, but rather as a reminder to myself that Rome was not built in a day—nor was any other large metropolitan area for that matter—and that the act of personal reformation takes time…to say nothing of urban infrastructure development in South Central Italy.

We are fast approaching the nine month mark since I was first told that I did not have cancer (which as you know was then followed by claims that I did have cancer, only to be disproved sometime later by exploratory surgery).  As those of you who read this blog may recall, shortly after I learned the good news, I posted a piece in which I dedicated myself to trying to reform my life—to eat better, exercise more, be more calm, and to regularly pray with meaning.  And for a good three months after that I was unstoppable.  I eliminated red meat and processed sugar from my diet.  I exercised four times a week and went to Tai Chi class once a week.  I meditated twice daily, and was, generally speaking, feeling great.  Then came the questioning of my previous diagnosis, the call for exploratory surgery, and a weeks-long downward spiral into self-pity and fear, all of which were accompanied by a brutal cold.  I exercised less, meditated less, ate a little less good, and felt a whole lot crappier.

 Since that time I have tried to get my efforts at reformation back up to speed.  I’ve been at the gym for about a month now.  I got back into Tai Chi class as quickly as possible.  And perhaps 50% of the time I’ve gotten back on my anti-inflammatory diet (no red meat or soda for me, but cookies and other sugary treats have exerted a powerful pull on my psyche….and my stomach).  But things haven’t been easy.  I have found that since surgery, my recovery time after exercise has grown considerably.  I get achier. I’ve come down with a wicked case of carpal tunnel syndrome, which at times can really hurt, and I seem unable to walk past a tray of baked goods (which are frequently present in my workplace) without grabbing something.  Friends have told me that surgery, no matter where in your body, can have a lengthy systemic effect with aches and pains that last long after the actual event and can happen anywhere in your body.  They tell me I shouldn’t worry so much and that things will be fine.  Also, over a beer the other day, a colleague of mine, a pretty fit guy, confessed that he too suffers aches and pains and that we are all growing older.  In short, everyone has told me to relax (which is more difficult than it used to be, too), that what I’m going through is normal, typical really, and that everything will be alright. As always I appreciate everyone’s good thoughts and advice, and yet I still can’t help but feel that I am backsliding.  That I’ve become complacent, and that I’ll never get back to the discipline I had in November and December of last year.  If nothing else, I am stalled, stuck in some kind of mental mud, my wheels hopelessly spinning and getting me nowhere. 

It’s at times like this, though, that I need to remind myself of my experience quitting smoking.  It took me three years to quit smoking.  Nothing about that process was quick, easy, or direct.  It was a lengthy and circuitous course filled with great advances, disheartening failures, ridiculous justifications about my inability to succeed, and powerful denial about the problems I faced.  Ultimately, though, I succeeded.  I did so because it mattered to me greatly, because my health and life depended upon it.   Now, too, I believe that my life and health depend a great deal on my ability to sustain an exercise and meditation regimen, to maintain a healthier diet, and to learn to relax a little bit.  And so I suspect that over time, I will succeed.  The process won’t be quick or easy, but I’m pretty sure I’ll get it done.  Still, the backsliding can be terribly frustrating, and so I need to remember what the urban historians tell us, that Rome wasn’t built in a day…Naples, perhaps, but Rome….never.  

As always…stay tuned.

Because It’s All About Me: Adjusting the Focus of My Blogging

22 Mar

 

People who know me know that I talk a lot.  Sometimes I talk about interesting stuff, sometimes important stuff, sometimes nonsense, but the bottom line is that I find it hard to keep my mouth shut in the company of others.  Also, I tend to talk a lot about me!  This is not intentional, really.  Often, though, I seem to speak in stories…not like the way that Jesus spoke in parables, of course, more like the way a Borscht-Belt comedian seems to have a story for every situation.  When I want people to understand that I’ve heard and understand, or sympathize, or empathize with what they’ve told me, I often respond by telling a personal story that I think will resonate with the topic of conversation.  I suspect that at times this trait is annoying, and I thank so many of my family and friends for their indulgence.

This trait in me, this habit of speaking about myself, is significantly magnified in this blog.  Truth is, I’ve looked around at personal health blogging a bit, and it tends to be a pretty “me-centered” project.  I don’t think any of us who blog in this way are unaware of or insensitive to the people around us.  It’s just that, let’s face it, when you blog about illness, or recovery, or some combination of the two, you really only have your thoughts and stories to work with.  I can’t, for example, meld minds with my daughter and learn in any textured sense what she’s feeling these days (although, Emma’s talented English teacher has her students doing weekly blogs, and Emma’s is quite good…check it out if you’d like).  And even if I could reproduce with perfect fidelity the thoughts and feelings of my family and friends, those thoughts belong to them, as do their trials and anxieties, and it would be a violation of their privacy for me to share those experiences in a public way.

Events over the past few weeks, and particularly the past few days, have made clear the tremendous psychic toll the past six months have taken on my immediate family.  To be clear, Amy and Emma are ok, but it is quite clear to me that they have suffered greatly through the process of diagnoses, misdiagnoses, conflicting opinions, and the general worry that comes with a bizarre structure located in the center of my chest.  The same is undoubtedly true of my mother and sisters, each in their own way.  At times my heart breaks for them, and as much as I crave a more definitive future for me, I yearn for their lives to be filled with joy, contentment, and ease.

Lately, I’ve been pretty down, and I am sure my blog reflects that.  My surgeon, who told me the other day that he sees it as his responsibility to resolve my “problem,” has a way of speaking that just seems to worry me more than it should.  Don’t get me wrong, he’s a good guy, I just wish he were a little more…chipper, I guess.  The truth is, though, that I am no worse off than I was almost six months ago.  Indeed, I am better.  I am blessed with an extraordinary support structure.  I have doctors insisting that they look at me every few weeks.  I have a remarkable wife, whose sense of calm helps get me through a lot, and an extraordinary daughter, who has had to suffer through a lot of my nonsense for the past six months.  I want them, and all of you, to know that, today, I see things differently than I did even a few days earlier.  There are lots of tomorrows ahead of us.  They will be full of pleasure and promise, and so I would like all of us to worry a little less during our todays—and that begins with me!

Finally, let me apologize for my selfishness.  Too often when I have asked for the prayers and good thoughts of this extraordinary electronic community, I have asked for such support in my name.  That’s wrong.  Should you ever think of or pray for me, please do so for my family as well (who needs and deserves such help) and while we’re all at it, let’s direct those good wishes to a world of people who suffer far greater anxieties, indignities, and illnesses than I ever have.  I know that you’re all good eggs and have been doing that anyway.  I just wanted to add my prayers to yours.

As always, stay tuned.

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. 

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.