I write this short prologue to what could likely be the last lemonade cancer journey post before the grand finale. I love life; I love you all; and I am truly inspired and honestly believe it is all of you readers and your comments, texts, calls, and social media posts that have kept me thriving for so many months. YOU are the persons that with love, devotion, and prayers have allowed me to enjoy so many of your communications, visits, special milestones with my family, and meeting three new grandchildren. So, it is way past the time I thank all of you for what YOU have done for me. I asked my son Jason (with input from his siblings) to wrap things up with a summary blog. Another may still be coming from “Little” Jeff. I was tempted to edit this, but it’s so sincere and from the heart, I just couldn’t do it. For those anti-opioid zealots out there, just know I am typing this intro after taking hydromorphone and alprazolam, “living” proof that people can be functional on such medications at the right doses for the right reasons.
Jason and family, thank you from the bottom of my heart for all you have done for me throughout your lives, and especially these last few weeks when you all kept your promise to “push me“. I will be watching over you for eternity. Here’s what my dear son had to say following our family week in Florida.
With my dad having joined the ranks of hospice and having entered the end-stage part of his disease, us kids and family are faced with an entirely unfamiliar situation. By force of nature dad is now the one in need of help and support (even in writing his blog). We aren’t at the “end”, but it is near. And in that nearness, there has been a scramble to squeeze the last drops of dad-time out for us kids and almost more importantly, papa-time with the grandkids. Channeling my best Jeff Fudin, I’d like to share his and the family journey over the last couple weeks so you can live it with us (and potentially gain a deeper understanding of the life of a patient and his family during this time).
The Bad News
For timeline, I’ll pick up where Dr. Gudin left off, the start of hospice on April 4th. With news of my dad’s decline I flew to Albany to help out and assess the situation. Things looked bleak, but with a glimmer of hope. While it appeared that my dad was dying from dehydration and starvation, it didn’t seem to be the cancer directly. We figured if he could get nutrients and fluid, maybe he still had a few good months left. On Tuesday, April 5th, we had our standard sibling Zoom call (me, Sarah, Hannah, Shirah) to discuss the current status of things. We were all hopeful. That hope was shattered the next day when my parents and I spoke to Dr. Onc. The issues he was facing were indicative of the end-stage of his disease. She explained that dying from the secondary effects of the disease (inability to eat or drink) was actually common and a potentially better way to go then to squander the last number of weeks of life by beating yourself up with chemo or ineffective treatments that artificially prop up the body like total parenteral nutrition (TPN). She told him that the choice for his treatment was his. We hung up the phone and cried.
My dad then turned to me and my mom and said “This is it, I’m really dying… If it’s the last thing I do and I need to crawl, we are going to Florida with the family. I’m not dead yet”. After some logistics discussions (what happens if he dies in Florida, how are we going to really get him down there, etc) we all said that barring some unforeseen event we were going to try to get as many of his family to Florida as possible for a week of fun in the sun!
The Fun in the Sun
My family (wife and kids) and sister Hannah’s family had already planned to either spend a week in Albany together with my parents or, if he was really able, down in Florida.
With news that Florida was really happening, we made arrangements and got excited for a week of beach and pool time. My other sisters, Sarah and Shirah, made plans for flights later in the week as well (their kids and spouses had just spent the weekend with my parents so wouldn’t be joining). News of this once-in-a-lifetime trip started spreading to others.
Zach and Shane Gray (the neighborhood kids that count my dad as a sort of pseudo parent) decided to fly in from the West Coast for a few days to join the fun. They shacked up with their parents, Becky and Barry, who were also there for the scene and are some of my parents closest friends. People drove up as well, like my dad’s brother Terry, his father Gil, and “savta” Davida. Also friends Andy and Alexis swung by for some hang out time. Navigating my dad’s physical state led to a few bumps and a bad day or two here and there, but it was a small price to pay for memories we will cherish forever.
We played on the beach, made cocktails (he just took a sip or two), did days and dinners by the pool, shopped in Amelia’s historic downtown with the necessary break for ice cream, told stories and relived memories from so many good years. Most of us ate way too much, my dad had to settle for burnt bacon sandwiches which he said he loved (I guess anything is better than not eating at all) and his favorite paella (which he paid the price for later, but was still worth it).
The Difficult Parts
The fun came at a cost. There were many hard exhausting days for my dad where he felt like he had run a marathon, but still had a hundred miles to go (the exhaustion was painful to watch). Hours of vomiting in Florida and on airplanes, teary eyed confessions that he sometimes wished he was just dead already because the fight was too much. I guess all of this was to be expected, this is the bargain he and we signed up for.
What was much less palatable for me, as someone who does not normally interact with the healthcare system, is how much money and policy (“policy” which is really just about money) effect everything. The hours and days (mind you these are FINAL DAYS) that are spent trying to navigate a system designed to drive people to just stay put and die already is sickening. There were a number of “hard parts” within the system, but I will focus on one, HOSPICE.
In the Albany area there is only one hospice company (this is driven by government regulation/policy). While the nurses are some of the kindest people you will ever meet, the administrative side of the business is anything but. As a true monopoly, they are in the business of exploiting their position for financial gain and reducing any and all “liability” which they can do because customers don’t have the choice to go with any other group. Short of a patient paying out of pocket, hospice gets to dictate how a patient spends their end of life. In our case, Albany hospice refused to sign a travel contract with a company in Florida. They encouraged us to “revoke” NY hospice, then figure out something else when were in Florida, and then re-enroll in NY hospice upon our return. What? Apparently travel contracts between hospice companies are common, but a few months ago the Albany hospice company decided that that was less profitable so they no longer did them. I called them, pleaded, and expressed my exasperation that the spirit of hospice was for comfortable end-of-life care and that their policy had the effect of trapping my dad in a geographic prison or gambling on what healthcare would look like for him while traveling. After days of threats and a ton of work to find and prepare to sign up with a Florida hospice company for a week, they finally relented. Meanwhile, the hospice company in Florida, VITAS, was a dream. The doctor (Director) assigned to my dad personally showed up and chatted with him for a half hour. They seemed to take the spirit of hospice seriously, constantly asking what they could do for my dad to get the most out of this special (likely) last week ever in Florida with his remaining time he had left in this world. Although it did bring a smile to his face that the family left behind would enjoy this piece of paradise forever with fond memories of building and furnishing it. Upon our return to NY, the nonsense started again. The Albany group decided on policies that would limit my dad’s ability to get IV fluids regularly on an as needed basis based on assessment (another large battle he recently won). Recall though that my dad still has all his mental faculties and spent years making such assessments for similarly situated patients, so really this decision should have been a no-brainer from the start.
A note to those responsible for governance in hospice, government policy and regulation has a real impact on real people. I am sure we just got a small taste of what happens when the government creates monopolies who financially benefit from providing the least expensive care relative to how they are paid. Given a stable of healthcare professionals and friends, we were able to solve things for my dad, but there is no way that is the norm. And I don’t even fully blame the Albany hospice group, they are likely just responding to a situation created by New York through its policy and enforcement.
New York… do better! Do better for people like my father who spent a lifetime caring for patients and being an advocate. Do better for our community of hardworking, caring citizens who at their most vulnerable are really in your hands. Do better for what it means to be a New Yorker and an American. Put politics aside and just do the most basic and humanistic things better.
The amount of awake and enjoyable hours in a day for my dad continues to shorten. He has become very focused on visiting (in many cases) various family, friends, and colleagues for what appears to me a shortened opportunity, and what happens when he is not here, which I guess makes sense. For all of us that love him so deeply, we will continue to selfishly squeeze every last drop out of this lemon. We will enjoy whatever time we have left with our papa, dad, brother, son, friend, mentor, neighbor, colleague because he brings us so much joy and we just can’t get enough. Love you dad 😊
Comments are enthusiastically welcomed. We love receiving comments on various social media platforms (Facebook, Linkedin, Twitter), but please also paste those comments on here if you have time!