Tag Archives: Survival

A New Chapter…Still in Limbo

4 Jul

Lifestyle choices.

My wife just joined the “gig economy.”  She is driving for one of those services that connect driver and passenger through a cell phone app (in light of their vast reach and rather spotty record of employee relations, I will refrain from mentioning them by name). She has given up her regular and not insignificant paycheck, her employer subsidized health insurance, and regular contributions to her 403b (like a 401k for the non-profit world) in exchange for a greater sense of freedom and a workplace that consists of just herself and whoever happens to be sitting in the passenger seat at any given moment.

This is a new thing for her…a very new thing.  For almost two decades my wife was a cog in the vast machine that is organized Jewish life in Los Angeles. To be clear, my use of the term “cog” is not meant to disparage my wife or her contribution to Jewish Los Angeles.  Indeed, I would argue that over the past two decades she has played a critical role in a number of organizations—they literally could not have functioned without her or someone like her.  Rather, I think the term reflects how, over time, she came to see herself and the way that she, and perhaps countless others, became a kind of a large, faceless bureaucracy that made organized Jewish life possible in the third largest Jewish community in America.

I bet I know what you’re thinking. My non-Jewish readers are likely struggling to understand the concept of organized Jewish life, while my Jewish readers are certain that there is nothing organized about any Jewish institution—and they may be right.  Nevertheless, the Jewish community of Los Angeles is made up of a host of synagogues, schools, community centers, Israel programs, social justice organizations, philanthropic endeavors, and one vast, centralized collection, or federation if you will, that attempts (and fails) to oversee, or at least assist, them all in their diverse and important work.  Again, because of their vast reach and spotty history of employee relations, I dare not mention that last organization by name, but those in the know can guess the institution that I refer to.

For a number of years, Amy was one of the many employees who made these organizations run. She managed the comings and goings of a small synagogue in the San Fernando Valley, followed by a number of years as an administrative assistant in Jewish educational and philanthropic organizations.  Ultimately, she served as a Human Resources professional at one of the largest Jewish organizations in town (no, not the Council of the Worldwide Zionist Conspiracy—though their benefits package is quite good).  And for a while, her work and her consistent move up the ranks—which she accomplished while being a wonderful, supportive mother, the primary earner in our home at times, and while completing a long-delayed BA degree—seemed to be tolerable to her, if not always satisfying.  She got the Jewish holidays off. She helped a range of people address their personal and professional needs, and as a family we spent a fair amount of time invested in the broader Jewish community (which included my studies in American Jewish history, my daughter’s attendance at a large Jewish summer camp nearby, and a host of other professional and personal connections to Jewish LA). There were certainly very good moments in her professional life and very bad moments too, but they seemed to be no better or worse than any other average Jane’s satisfaction or dissatisfaction with their workplace.

But eventually, things changed.  Over approximately two years, Amy’s sense of professional satisfaction and above all her health and well-being deteriorated—sometimes gradually and sometimes with shocking rapidity.  Those who have read my work before know that over two years ago Amy suffered a brutal, devastating bout of pancreatitis that laid her up for much of the summer of 2015.  In some ways, she never recovered fully from that illness.  At the very least, the few communal, local, state, and national systems in place to support her recovery failed, and my wife—who by the time all was said and done experienced terrible mental anguish and physical suffering—was forced back into the workforce well before she had the strength or physical and mental wherewithal to engage with it.  On her return, she found a work environment, and perhaps a national culture of work, that had little patience, and even far less sympathy, for her condition and constitution.  The hardheartedness of her workplace and utter lack of sympathy for her health and well-being ultimately led to another, terrible physical deterioration, a lengthy and desperately needed enrollment in our state’s disability system, and, finally, a change in the way she earned money.

I think that I would like to rededicate my blog, which has become rather moribund over the past year, to contemplating and exploring how Amy’s life changes came to be, and how the changing health (both physical and mental) of one or more of family members can shake the family unit’s sense of calm, happiness, and stability to its core.  We are undertaking a new path—Amy, Emma, and me.  And I don’t know where it will lead or if it is sustainable.  If there is one thing that I have learned since my cancer scare, which took place almost four years ago, is that I cannot predict the future at all.  We do our best.  We plan for what we allow ourselves to believe the future might bring. We budget our money best as we can, visit our doctors, try to maintain robust physical and mental health, invest in school, or retirement, or some other such thing, but we simply cannot predict where our hopes, and dreams, and plans will lead.  We do, however, know something about the past.  Indeed, that is the primary reason that I became an historian, not because I wanted to use the past to predict or prevent the future, or even to make sense of the present, but because I have found that the past is the only moment in time that we have the vision and the leisure to review, reflect upon, and, to some extent understand.  So, now that my family seems to be shifting our future direction, I think that I would like to look to the past a little bit to understand how that came to be.  I would like to see what lessons I can learn about our systems of work, finance, and healthcare, the often inexplicable way that family binds us in good times and bad, and, above all, the very tenuous nature of human health and well-being.

A few logistical notes before I sign off.  I think that I will still call this blog Limbo.  It just feels right.  I think that as long as we live we are always between states (e.g., health and sickness, wealth and poverty, mental stability and instability, etc.) and in many ways, I have found great satisfaction in using the written word to contemplate that sense of in-betweenness.  So Limbo it is!  Also, I am not going to make a big deal about this blog. I am not going to post it on Facebook or talk about it a lot, like I used to.  Those who are already connected to my blog will likely get some kind of update from WordPress.  Those who are not connected, that’s fine.  In some sense, I am writing just to hear myself think (I know how contradictory that statement is, but it feels true).  I appreciate an audience (a lot, actually) but I do not require one, and I actually feel a little sleazy about the way that I used to promote my blog to the public. If people want to read my blog, great.  If they want to share it…that is their choice and not the result of me hawking the latest edition. If it just sits there in the ether unread, well…at least I said my piece. Also, I have no idea how often I can update my posts….so likely better to just keep this to myself and see who shows up for the party.  Finally, I encourage those who do read this blog to respond to it.  I have always hoped that the great promise of blogging would be the way that it can facilitate an exchange between the author and the reader.  Sadly, I have not been able to create fully the kind of exchange that I seek (at least not with any consistency) but maybe things will be different this time.  So please respond.  Just don’t be mean.  Life is too short for such nonsense.

As always….stay tuned!

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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.

Getting Back Up on the Horse: Seeking a Favor as I Come to Terms With My Impending Surgery

11 Mar

 

keepcalm

Recently I confessed my deep-seated fears about my upcoming surgery and the possible news that might accompany it.  I told my friends across the electronic spectrum that I was scared…REALLY REALLY scared.  Indeed, I had been so scared, that I had basically abandoned so many of the things I do to keep gather my courage and keep my fears at bay.–like blogging, meditating, eating well, etc.  

Soon after sharing my fears, though, I was engulfed in good wishes and words of support.  All of the comments on Facebook, the occasional phone calls, e-mails, and other good wishes convinced me to get back up on my horse–to engage in the practices that have helped me get to this point as sane as I can be.  One note, in particular, from a friend of a friend, really helped.  She told me of Peggy Huddleston’s imaging work to prepare for surgery and heal faster.  I really took to Huddleston’s ideas and have been doing the imagery religiously for almost three days now.  It helps…so does upping my Ativan from once a day to twice, but Huddleston’s ideas REALLY, REALLY help.

With that in mind, I would like to ask all of you to participate in a little exercise from Huddleston’s work.  Best I can tell, my surgery will take place at 8 am Pacific Time  on Wednesday morning.  I would greatly appreciate it if about a half hour before, you start to think about me from time to time and maybe say a little prayer.  While I have no idea if this particular exercise works, it surely couldn’t hurt.  So please keep me in mind and pray for me.

Wednesday I will try to post something quickly on Facebook as soon as I get my phone back.  Then, if I have the strength and presence of mind, I will write something more detailed that afternoon or evening.

Stay tuned, and know that your care and concern means the world to me.  I am truly surrounded by love.

Thanks,

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.

I Live to Scan Another Day

16 Jan

Erik Hat

 We return to the central narrative…

An emergency room CT scan intended to locate a kidney stone (my first and hopefully my last) uncovered a large mass near my left lung.  Within days a Spiral CT revealed the growth to be a cyst, but a series of enlarged lymph nodes and an enlarged spleen suggested something more sinister.  On to an oncologist appointment and a Petscan, all intended to prove my doctor’s suspicions—that I had some form of lymphoma.  Though the radiologist for the scan asserted that I most assuredly had lymphoma, only a biopsy could provide some certainty and tell us what type.  I received a CT guided needle biopsy, waited one week for the results and….no cancer…a big ole thing in my chest, yes, but no cancer….a bunch of enlarged lymph nodes, an enlarged spleen, and a higher than usual metabolic rate yes, but (say it with me now) NO CANCER. 

Off I went to live my life (perhaps more mindfully and somewhat improved) and to await my next scan.  Two months flew by and there I was, again, me and my tumor, under the CT machine (which looks like a giant donut).  I take some radioactive sugar.  They take some pictures, and one week later, the results show…..

Good news and…. Well, still pretty good news.  The tumor is stable.  Some of the lymph nodes have reduced in size.  Others have seen a drop in metabolic rate, and my spleen has reduced down to just a few centimeters over its normal size.  This is good.  But what to do about all this?  How do you deal with an 8 cm mass in your chest and enlarged lymph nodes? Well we had a bunch of choices, but as any of you who have talked to me these past few months know, this was all headed in one direction, a surgical consultation.  I want to know if we can get this thing out of me without too much trouble, and if they can, they can grab a lymph node while they’re at it and see what it has to say.  If not, we scan again in three months.

In the meantime, I continue my efforts at behavioral reformation, active health, and spiritual peace of mind.  I can’t say for sure that my steps towards a healthier lifestyle have helped, but they surely haven’t hurt. 

Thanks to everyone for your good wishes, your kindness, and your continued indulgence in reading my blog.  You are all too kind.

Stay tuned.

Where Things Stand Two Months In

4 Jan

 

Keep-calm-and-carry-on-scan

In mid-December I received my most recent referral for a PET/CT scan. Very soon  (January 9th  to be exact) I will go through another scan—another day of avoiding carbohydrates in preparation, another moment to ingest and be injected with radioactive sugar, another week-long wait for my doctor’s appointment with the results, and hopefully another moment of simultaneous confusion and relief.  Two months have gone by in the blink of an eye, and I find that in some ways I am as scared and uncertain as I was when I first took these tests a few months ago.  Then I was told in no uncertain terms that I had Lymphoma—a diagnosis that turned out to be false.  Now, I don’t think anyone really knows what’s going on.  When last we looked, I had a benign tumor in my chest (which I swear I don’t feel at all), several enlarged lymph nodes, and a slightly enlarged spleen. Now…..who knows?  Only the scan will tell.  I am right back where I started.  Well, in truth, not right back where I started.  As I’ve noted in other posts I have tried to use my bizarre circumstances to motivate me to pursue greater active health and peace of mind. On some counts I’ve succeeded, or at least started down the path to success.  In other ways I have been less successful….I think.

On the success side I have put a great deal of effort into my fitness and my diet.  I go to the gym often and have even started taking Tai Chi class.  Tai Chi is not new for me.  It’s something I pick up every 5-10 years or so, like trying to read all three volumes of Proust’s Remembrance of Things Past.  As with reading Proust, in the past I have embraced the study of Tai Chi with a zealous passion only to abandon the practice about 6 months in.  Actually I tend to abandon reading Proust much sooner than that.  This time feels different, though.  My interest in Tai Chi this time is not about a fleeting passion, but instead a genuine belief that I should find as many reasonable and affordable ways as possible to stay physically active and mentally calm.  Tai Chi seems to fit the bill, and I hope I stick with it.  As for my diet, I have tried to adhere to the anti-inflammation diet.  I avoid most processed sugars (except for a few weeks ago when people flooded me with their holiday wishes in the form of cookies).  I eat a lot more fish and vegetables than I used to, and I think I’ve eaten red meat just twice in the past two months (maybe three times).  We cook a lot more. I feel a lot better, and while I have not lost any weight (not a friggin’ ounce!) people tell me (without prodding, mind you) that I look lighter.  I’ll take it!

Less successful, I think, has been my ability to, as the internet meme demands of us, “Keep Calm and Carry On.”  In truth, my efforts to attain greater peace of mind have improved.  There’s the Tai Chi, the meditation (once or twice daily), the continued, single daily dose of Ativan, and a general effort on my part to appreciate what I have and to keep it together.  And yet, as I get closer to my next scan, I can’t help but freak out a bit—not all the time, of course, but a little more often than I care to.  It creeps up on me when I least expect it.  For example, lately my daughter has developed a particular fondness for the BBC cult classic, Dr. Who, a show I never really cared for all that much, but which really gets under my skin these days. Merely hearing the theme song is enough to agitate me, and a cable channel’s recent New Year’s Eve marathon, which I watched a bit of in an attempt to find some common cultural ground with my teenage daughter, left me profoundly unsettled and unhappy.  At its core the show contemplates the vagaries of time, and for me uncertainty can be an alarming state these days. 

Uncertainty is the tough part about my current condition.  It is vague, undefined, and in some sense unknown.  Left to my own devices my mind will attempt to end the uncertainty by filling in the blanks with a series of scenarios, some pleasant and some terribly frightening.  I have tried, with varying degrees of success, to keep my imagination in check and follow Peter Pan’s advice to “think lovely thoughts,” but sometimes I grow tired of constantly reminding myself that there’s nothing to be afraid of unless/until there’s something to be afraid of.  I am trying harder than I ever have in my life to live day to day, but sometimes I am so desperate to know my future that it consumes all of my intellectual strength.  Naturally I long for good news, but deep down, something inside of me craves certainty just as much. Put simply, living in limbo can be exhausting.

I recognize, and have blogged about, the fact that we all live in limbo, that none of us can predict our futures with any real certainty, that, as my Tai Chi teacher has observed, the past and the future are figments of our imagination.  Most days that’s works.  Still, I do wonder whether I will ever be fully comfortable with that concept.  Just days after my positive, though, uncertain, diagnosis I asked the question, “Can I feel better?” Could I turn my recent tribulations into a catalyst to live a healthier life?  In many ways the past two months have shown me that, yes, it is possible for me to live healthier and to even enjoy doing so most of the time.  Now, just a few short days from my forthcoming travails, I wonder, “Can I train my mind to live life in the moment?”  Can I end one of my most notable habits of mind (my unique talent for worrying)?  Can I replace loathsome thinking with lovely thoughts?  Can I somehow learn to appreciate Dr. Who? And is it possible, is it even remotely conceivable, that I can “Keep Calm and Carry On?”  Your guess is as good as mine, and your tips and suggestions on how to achieve that state are actively sought and deeply appreciated—save for the Dr. Who thing.  Seriously, I have never liked that show.

P.S. I promise to post about my next doctor visit (January 16) as soon as I can.  Thanks as always for reading, and a belated Happy New Year to all of you.

E