Shalom, all.  

I apologize for my lack of response to the many of you who have inquired.  And I must make this a continuing apology, as I will be unable to respond to most emails, text, and calls.  It’s just too taxing.  Drafting this post has itself proven to be a huge effort in my current state. 

Since my last post on August 31st, my life has been highly eventful and at times difficult, as summarized below. 

My family had planned a beach get away to celebrate my birthday on September 11th (yes, I know). Unfortunately, on Friday evening at 10:15 PM, my doctor called to tell me that one of my blood markers (“bilirubin”) had spiked. I was turning jaundiced, and my liver (main tumor site) was not working.  As things stood, I was no longer eligible for the rigorous clinical trial I had expected.  

My doctor  told me to go immediately to the emergency room, where he had arranged for hospital admission and a cat scan to see if my bile duct had a blockage. If so, surgery would be attempted the next day. The scan, however, showed no blockage. It was apparently the cancer.  There was no treatment. I decided to ask my friend, a very experienced gastroenterologist, to take a look as a last resort. He recommended me to a liver specialist in Newport Beach. This specialist reviewed my scans and was optimistic that there was not only indeed a blockage but that it could be resolved through insertion of stents. Eventually, I had the stents inserted. However, then a new problem arose: hiccups about every three seconds. This went on for eleven days and nights (!) was truly miserable because neither I nor my wife could sleep and I could not focus on anything. 

Eventually, the hiccups subsided, B”H, only be superseded by a new problem: liver problems caused fluid buildup For the past week, coincident with my enrollment in hospice, my abdomen has filled and filled until I now look and feel like a huge aerial Thanksgiving Day parade balloon.  Feet are so swollen that it is difficult to walk Though very tired (hence, in part, the delay in this post) sleep continues to elude me.  

Diuretics did nothing, so are now hoping for manual withdrawal of fluid from my stomach as needed, possibly as soon as tonight – after a week of waiting.  My legs are like waterlogged posts with ten small stumps oddly placed at the end, (five on each side, like one version of the Luchot HaBrit?).  It’s nearly impossible to bend over from a standing position and difficult from a sitting one. There are other issues, of course, but for the sake of propriety I will leave them to your imagination. 

I have very little energy and have not gone to my upstairs office in at least two weeks. I'm too tired to focus most of the time.  Just writing this post – slowly, and now with the editing help of a daughter – has been exhausting.  Many times each day and night I roam the house like a ghost looking for a more comfortable position to sit for a while.  (Normally, I retire early, but it is now after 2am and I can again find no sleep relief.  Another very long night. I’ve just started to try Meletonin; may need to graduate to sleeping pills, but I also take Norco 1-3 times daily to alleviate back and/or abdominal pain, and expect this to increase until I need stronger pain meds.  Morphine? Opioids?  I can “hardly wait” to find out.) 

With this long (and yet only partial summary) tale of woe, are they any positives to report?  Absolutely. My London-based daughter has reoccupied her bedroom.  My other adult daughters, on occasion with their husbands, and their three sons cycle frequently between their own homes in the San Fernando Valley/Escondido area and the “girls’” old bedrooms here at home. They have been so supportive, and it has been an absolute delight just to have them all around so much, with plenty of reminiscing and “here’s what I wish for you and your children” time, when I am up to it. The house is alive with their chatter and 30-40 year-old daily life commentary. How wonderful to see them strengthen their bonding.  If only the cost weren’t so high.  Of course, I should continue to praise my wife Barbara, eshet hayil, who has been and continues to be magnificent in her many roles as we go down this road.  I try not to forget that she has her own challenges and anxieties in all this.  

Being on Hospice for a week has been an “interesting” but frustrating experience so far.  I’m with a large firm, connected to the hospital I’ve been attending all this time.  Upon my enrollment, they immediately arrived with an oxygen tank, hospital bed (albeit flimsy and uncomfortable) wheelchair, walker, cane, and commode.  An aide comes three times a week to help me shower, etc. So, I certainly can’t complain about lack of attention.  Yet, efficacy is another story.  I have already seen a succession of LVNs and two RNs, 7 or 8 in total and never the same person twice.  Some seem competent; many do not and are ill-informed about my case despite my duly explaining to each one and available notes by their predecessors.  No apples needed; the cost-saving, reporting, and service structure very effectively keeps the staff doctor away.  

But today – finally, and after a week of increasing discomfort – the doctor will visit me.  I’m hopeful that the aforementioned draining procedure can begin “quickly” thereafter, although there will be orders to write, scheduling to arrange, etc.  So, all in all, I’ve already received a large amount of Hospice attention, but very little in actual palliative care.  I’m hoping, BH, that my condition will stabilize and that I won’t be trying and trying to get discomfort and pain relief!  That’s what hospice is supposed to be for! 

Now, a shift from physical to mental status.  So far, I have addressed my status and facts. But how am I actually feeling about all this?  I find myself increasing in the “regret for not having done…” stage of life.  As just one example, I find that a brief comment in the LATimes by a Laguna Beach resident fearing the calamity of an oil spill on the beaches and coves has surprisingly touched me.  He marvels that such mostly still-pristine places exist right next to our metropolis and teases his neighbors who are lifelong residents for not better appreciating what they have. “I see garibaldi and calico bass. You see schools of anchovy as big as a bus right underneath you.”  True, I traveled often to Israel and have seen many slivers of the world by leading High Holiday services on cruise ships. But why did I, who loves the ocean and had serious long-distance sailing intentions on my own boat (I've owned numerous sailboats and sailed them to local offshore islands sometimes alone). But I could have taught my grandsons to snorkel Laguna Beach coves and could have increased their appreciation, along with my own,  for the amazing coastline. Why didn't I?  

Fortunately, I’ve had opportunities to meet with friends and to reflect upon the many options I’ve had and pursued for varied activities and study, all financed by a 30-year, part-time solo business insurance/law and expert witness practice that allowed me to work from anywhere, especially from dozens of rented Jerusalem apartments.  I still feel that becoming an Israeli citizen is one of my greatest accomplishments.  Imagine what scores of generations of Jews before me would have thought!  Of course, my citizenship has been an idealized one. No having to get by as a true oleh. No competing in the job and housing markets at low salaries and still poor Hebrew.  No army service, etc.  But, still. I have an Israeli passport and know the streets of Jerusalem.  Astounding, and I hope, I path for at least one of my grandchildren to follow. 

It would be odd indeed if I “had no regrets” about spending too much or too little time and effort on any or many of a very wide range of activities and studies.  As Blue Eyes sang, I (mostly) “did what I want(ed) to do” – My Way, including many mistakes along the way -- with a very patient wife… so long as I kept working from wherever to meet expenses!  And, BH, I could and did.  Still, I never did sail my own boat around the world, or spend half-time in Israel, both of which I very much wanted and spent years preparing to do.   And even here in So. Cal, I would have moved to a much larger and more active Jewish community.  These regrets “too few to mention?” 

Secondly, being a strong “cancer warrior” is commendable, but it’s already now been more than 2.5 years since my diagnosis.  Frankly, I’m tiring of this.  When my symptoms are “managed,” I feel motivated to continue and certainly don’t want to leave the “bosom of my family” nor even stop working on my projects.  But when they’re not (like now), I feel ready to die anytime and would even prefer that it be sooner rather than later if I can avoid pain and or other discomfort while lying incoherent or nearly so. I know that this is not the proper halachah, but it is the truth.  Of course, I’m very, very lucky to have had all this time – but it’s still been hard.

Thanks for all for reading all of these ramblings, and for your caring words, prayers, and sympathy.  Many blessings to you and yours.

Art Levine