On April 6th, Dr. Jeff Gudin texted me, devastated when he learned, but fully understood, that I signed up for home hospice. The message essentially read that he realizes I’m tired and declining, and so he decided to write a guest lemonade blog which he planned on completing the next day. He indicated it was personal and that I could post it or not, and/or he’d have it published if it was acceptable to me. Not 30 minutes had past, and my son-in-law, Dr. Jeff Bettinger (little Jeff), sent me a similar text without any inkling that both Jeff’s had a similar idea… I suppose great Jeff’s all think alike. Of course, I was delighted and would cherish both of them.
Unfortunately, my torturous, yet endearing and memorable early April escapades and final trip to Florida had delayed my compulsive editing of his blog (originally a bit more risqué than my usual posts, though he considers his writing to be more idealistically romantic than my own, afterall, his hobby is writing romance novels – we need an emoji for that one). Thus, by the time I had edited it down to a final version, so many weeks had passed with so many changes, that we decided to prioritize my son Jason’s blog post instead to recount the most recent updates in real time, highlight the family trip to Florida, and allow for some closure for us all, although you haven’t heard the last from me. I’ll be back to haunt you in more ways than one, and if you’re old enough to remember, think of The Great Gazoo.
There were still some important concepts we wanted to share, however, specifically around stopping chemotherapy, starting hospice, and death itself, and how all of it relates to our year long journey together through this blog series. Therefore, after discussing back and forth, we decided to condense little Jeff’s previously written work to help disseminate my concluding thoughts in the form of his ink laden typography.
Two blogs in less than TWO WEEKS?!?
OH YEAH! Makes me want to do the “Who’s Your Daddy” Dance!
LINK, “Who’s Your DADDY” – JeffRx in his element
For all you wonderful readers who have followed the blogs written by my father-in-law/mentor/colleague/best friend (or, simply put, DADDY) this past year, you are all, by now, aware of his progressing symptoms and current condition requiring a transition to hospice care. Because of this, and his sheer exhaustion, I had offered to write the latest blog to continue updating everyone on his journey and providing insight into the persistent lessons learned along the way; such as Jason Fudin and Jeff Gudin before me. Being a bit derailed from the rapid progression that a disease like cancer so often consumes us with, as Jeff indicated, we decided to skip my original update in lieu of Jason and the family’s recent post. And, really, their blog sets the stage for that final peek into Jeff’s life and the proper finale for this series.
So, I suppose, think of this as an epilogue or post-credits scene of sorts (perhaps not the last post-credits scene for all you Marvel nerds out there). A writing representative of the tale Jeff may have told if he still had the ability to speak for more than ten minutes at a time, or keep his head up longer than a typical Glenn Miller tune (think of “In the Mood” that Jeff miraculously performed at the Cole wedding mid-chemo in Oct 2021). A lasting message that he so wanted to propagate to you all through the lens of someone who has borne witness to the complex blend of devastation and emotional discovery that cancer has the capability of inducing to those we love most.
Let us all, for one final time, go where “no Jeff has gone before”.
Lessons Covered Today:
- Palliative Care and Hospice: A Final Opportunity for Comfort.
- Pain and Palliation: The Circle of life for JeffRx.
- Has Cancer Finally Prevailed?
Palliative Care and Hospice: A Final Opportunity for Comfort
As hinted at throughout the past few blogs, Jeff has begun to succumb to the tumors that infiltrate his body. The pain, the lack of nutrition and hydration, the energy depletion, it had all combined to create a rancorous fog around him. His outlook seemed bleak, himself barely able to put together a full sentence a few weeks ago due to laryngospasms and vomiting… He looked like a man on the brink of giving up. Despite the support from loved ones, from friends and peers and colleagues, despite the prayers received from the thousands of you following along, in early April it appeared that he had come to the realization that his end may just be here.
Yet, he didn’t feel depressed, at least not in the traditional sense (though, our emotions run on a spectrum and are not as black and white as most clinicians desire them to be). He didn’t feel sad or angry. He still assures us all that he has no regrets in life, a feat remarkable itself. If anything, he remains in a grateful sense of appreciation from all of you who have helped support him during this journey, who have kept him strong and resolute in living life to its fullest this past year. He remains as practical and rational as he can be about this situation, a testament to preserved mental faculties while appropriately treated with opioids (even sometimes together with benzodiazepines, like Xanax) that he has taught us all so well. But, he was exhausted and dehydrated and emotionally spent.
This is what finally led to him and his lovely wife Robin/Beans/Mom (primarily the latter) contacting palliative care and re-establishing with them the weekend of April 1st (no, solemnly, none of this has been an April Fool’s joke). Now, Jeff wanted to be honest here, he probably should’ve hooked himself up with more regular palliative care engagement months ago. It’s a common misconception that palliative care is only for the end of life. In fact, per the World Health Organization (WHO), palliative care is really a type of closely monitored care available for those suffering from any life-threatening illness or advanced disease state. Indeed, prognosis (or estimated time to death) is not involved whatsoever in determining who is eligible. Someone with kidney disease with a life expectancy of 15 years could be equally appropriate for it as someone dying of stage IV pancreatic cancer with an expectancy of 3 months. The greatest benefit of palliative care services is that the team of clinicians can urgently help manage acute comfort symptoms (pain, sleep, mood, hunger/dehydration, etc), monitor closely, and help get one in touch with services one may need in that moment (as excellently detailed by Jason).
After the help from palliative care that weekend, it led to a meeting with hospice on Monday, 4/4, which is, again, detailed in the previous blog. To delineate, hospice is a subspecialty within the umbrella of palliative care, however is generally only available to those with a life expectancy of 6 months or less (just remember, Jeff has technically had that expectancy since last June). There are many other facets to hospice that are, of course, vastly important for managing symptoms in the very end of life. Some of these include establishing with a hospice care team to monitor you from home, increasing access to medical equipment/treatments that may improve comfort, and enhancing follow up to ensure comfort is completely optimized. Now, as pointed out by my brother-in-law Jason, in the previous post, the bureaucratic side of hospice can be quite the nightmare, filled with patient centerless decisions and is often a place where dollar signs rule over patient care. Though, overall, it is always more helpful compared to the alternative, a place where the nurses and clinical staff reflect the type of competency and compassion that should be exemplified by all of us.
Hospice also means that we usually must stop life prolonging treatment (including chemotherapy).
Pain and Palliation: The Circle for JeffRx
With the enhanced support by his new hospice care team, things have finally seemed to stabilize a bit; even if for a short period of time. Since his not so triumphant return from Florida in mid-April, there have been more moments of comfort, cognitive lucidity, and time for reflection. Through a collective effort by Jeff and his extended family, our new friends with NYS Hospice were agreeable with increasing frequency of IV fluids to maintain his hydration. His preference to switch from standard morphine to hydromorphone was honored and has allowed him to manage abdominal pain thus providing the opportunity for SEVERAL close friends, loved ones, and family to visit these past two weeks. This album shows many of those visitors captured in the moment – as we receive more, we’ll add to the album.
Of course, for anyone who has ever had any conversation with Jeff, we should all know that hydromorphone is a more potent opioid, has greater lipophilicity (thus can penetrate our CNS to a greater degree), is less likely effected by pharmacogenomic variability, and is available in several dosage forms compared to morphine, making it an ideal end-of-life analgesic. In fact, you might recognize a few of these authors. An opioid that Jeff himself has prescribed on numerous occasions, perhaps initially when he was working in that Oncology clinic at the Albany VA all those years ago (YES, pharmacists can absolutely prescribe medications and they should be able to). An opioid that may make all the difference for those suffering from different types of intractable pain and allow them some dignity while trying to continue living life no matter the amount of lemonade left in the tank.
Jeff still vomits in small amounts, can barely keep much down (though he savors every bite he is able to ingest), and epidermis is changing in color and feel (likely the beginnings of tissue breakdown while his body continues succumbing to those tumors). His body appears more like a skeleton than ever before, skin and tissue withered to the bone. His physical mobility is gradually undergoing the kind of rallentando reminiscent of the second movement in Beethoven’s 6th Symphony.
Yet, Jeff looks and speaks as though he is at peace. He appears content with how he has always lived life, not only within the past ten months, but throughout the entirety of his being. There is a clarity to him, mentally and physically, an acceptance of where he is and what those next steps are. Perhaps, even, a readiness for the unadorned path that lie ahead. And, why shouldn’t there be? While there’s no doubt he’s still young, no doubt he wants more time in this world, no doubt we all want more time with him, he has always had that rare and peculiar ability to actually give us his time. The ability to have always given us his full attention, listening completely without judgement, allotting us seconds and minutes and hours that never seemed wasted… Now, in fact, seeming quite the opposite. Time itself is something we all end up desiring more of in the end, a dimension of reality that none of us can escape. So, it makes all the sense in the world that he can accept his future, leaving us here to soldier on without him while coping with the concept that time is simply unidirectional…
Though, we will never really be without him.
Jeff understands that his symptoms will not diminish, will likely become worse, and will continue preventing him from eating much of anything the next days and perhaps weeks to come. That, cognitively, he may continue to diminish too, gradually losing touch with reality, and, physically, soon be unable to move at all. Though, there is finally a willingness from him to be undaunted by the happiness and comfort that comes his way. A tranquility that seems to balloon around him from the understanding that his family and those he has so carefully taught and loved will carry on his torches of knowledge and passion, joy and love.
- Has cancer finally prevailed?
To the question that has been posed to the millions with cancer who have come before Jeff, and that will be posed to the millions who develop cancer after Jeff is hopefully helping us from above (or haunting us, depending on who you are)…
When we stop chemotherapy, does it mean that cancer has prevailed?
We BEAT cancer by living our lives to the fullest extent while battling its unrestricted growth and decimation of our bodies.
We BEAT cancer by spending every extra second we have on this Earth with those we love and those who mean the most.
We BEAT cancer by fighting to prolong our own lives long enough to allow those closest some semblance of closure and hope for peace after we’re gone.
We BEAT cancer by providing the experience to those clinicians and researchers who are so tirelessly working to end this despicable disease once and for all.
We BEAT cancer by accepting that time is relative, that it can be stretched, and bent, and slowed, but not stopped… Not reversed.
We BEAT cancer by rising up and facing our fate when that lemon tolls for thee.
That lemon may be tolling with greater tone, with every toll drawing nearer and nearer, though Jeff can assure you all that he is not giving up. Death is an inevitability for us all, so death, even itself, cannot mean we have given up. Stopping chemotherapy cannot mean we are giving up. Accepting hospice and additional aid and even more prayers for comfort cannot mean we are giving up. No, you all have provided that light to brighten Jeff’s darkest of days (and truthfully some of his happiest), and Jeff’s hope, to some microscopic degree, has been that these writings have given someone out there that energy and excitement to live life every precious day to its own fullest extent. That we, all of us, have provided some semblance of hope of what life may look like and just how full it can be when faced with the gravest of fates.
For that, Jeff is eternally grateful to you all.
He has read every single comment, text, and email sent to him following the lemonade blogs, and felt in his own universe the prayers poured in from all following along. He still feels fortunate and grateful since his diagnosis exactly one year ago today, that he has been provided the opportunity to take part in his own memorial for the greater part of 8 months. Grateful that this blog series has helped allot him some closure, peace, and joy.
The world may continue spinning round unconcerned with the pettiness of our problems day to day. Though, it is a world made wholly different, the lives in it made wholly different, the time constructing it made wholly different… Because of Jeff.
And, for that, we are all eternally grateful to him.
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