Today I write this from chemo land as usual, comfortably sitting with a room full of nurses and other victims of the big C. It is chemo cycle number 19, and hard to believe how much has happened since last May.
[Don’t worry, although there’s some warm and fuzzy in this blog, there are medical lessons too!]
Note, there was a pending 4 day trip to Disney World courtesy of Sarah and Andrew to spend in “the most magical place on earth” while staying at the Disney’s Polynesian Village Resort with their two little princesses Anna (aka Silbie) and Emily (aka Boombah) – did we make it? More to come, but the featured image tells the story.
Topics Today
- Lessons throughout
- Irinotecan pharmacology compared to oxaliplatin
- Pharmacogenetic UGT1A1*28 test results and explanation
- Implications of steatorrhea?
- The kids strike again…
- Emergency Room medical care lessons
- Disney Trip – will it happen?
- Disney travel fiasco – oh my
- Beer and Kahlúa versus “chemo buds”. What works?
- What’s my medical status?
- My kids; my parachute
- Closing remarks: Why did you have four children?
The blog title question, “When Daddy gets too old to walk, what will you do?”, is what I used to ask my kids before I’d push them in their strollers, especially if they were tired and cranky. And I promise you, they all remember. The correct answer of course was, “I’ll push you in your wheelchair Daddy”. Admittedly, 63 years old is young, but recent events have necessitated some “push me” time. As this blog unfolds, it will be clear why this one is dedicated to all my children (Jason, Sarah, Hannah, and Shirah), with a huge honorable mention to their spouses and wifey Robin.
For anyone that’s had children, you know that in their teens and young adulthood, they all seem to engage in activities with a sense of invincibility. Once they become parents, that all changes or at least subsides, and then the cycle begins with their own children. Robin and I brought up our children such that, assuming we even knew what was going on, we’d lead them to the edge as they navigated life choices, but mostly would let them make their own choices, but we’d be there to catch them before they fell. These last few months, I feel like I’m looking in the mirror – they in fact at times seem to think I’m invincible, but I know in my heart all four of them have led me to the edge of opportunities and memories over this last year, and together with Robin, they’ve been there to catch me.
For example, in the last post I spoke about my Utah trip to meet up with Robin and hold my new grandson Jethro in Salt Lake City. The trip was iffy because I knew my disease had progressed and I was on a decline. I had encouragement and careful caution, as Jason stayed with me in Robin’s absence before my departure. I would have crawled across that Salt Lake City airport on my hands and knees to meet Jethro, and the truth is, I practically did. But when I got there and spent three days on the couch, Hannah, Kris, and Robin understood and kept me from falling.
We know from the last post that on 3/7/2022 I received news that most probably I am having disease progression. On 3/8, my oncologist from Sloan Kettering (second opinion) agreed with our decision to restart oxaliplatin (to replace bevacizumab) for two more oxaliplatin cycles (4 total), repeat CT scan and make follow up visit with him in 5 weeks. The ascites (remember, fluid in the abdominal cavity) or peritoneum is likely tissue breakdown from growing tumors. There’s no right or wrong answer of whether to go back to oxaliplatin or move on to second line therapy using irinotecan instead. Or Irinotecan could be used for now with option to go back to oxaliplatin. If we do oxaliplatin now, irinotecan just becomes 2nd line by default if oxaliplatin fails. We’ll be balancing efficacy and neurotoxicity with oxaliplatin, keeping in mind that neuropathy is cumulative and can be delayed as well. And right now, HANDS ARE TINGLY and it’s difficult to type now that I’m home and was exposed to fresh 50 degree (less than room temperature affects the neuropathy) air on the way home.
Lesson: So what’s the difference between the drug selections?
Irinotecan prevents religation of the DNA strand by binding to topoisomerase I-DNA complex. The formation of this ternary complex interferes with the moving replication fork, which induces replication arrest and lethal double-stranded breaks in DNA.
Oxaliplatin exerts its cytotoxic effect mostly through dna damage. Apoptosis of cancer cells can be caused by formation of dna lesions, arrest of dna synthesis, inhibition of rna synthesis, and triggering of immunologic reactions.
Why should we care? WE care because cancer cells mutate and learn their way around these drugs, so having different pharmacological mechanisms is important and can extend life.
Remember last post I spoke about getting a pharmacogenetics test for UGT 1A1*28 gene to anticipate potential of severe neutropenia from irinotecan, should I start that medication? Even Dr. MSK Memorial Sloan Kettering) said they don’t order that gene in advance of ordering irinotecan but admitted it’s a good idea. Geeze modern medicine – get with the program and let pharmacists help guide individualized medicine; I mean we do have the technology! See UGT1A1 polymorphisms in cancer: impact on irinotecan treatment.1
Gene test results and lesson
The UGT1A1*28 gene results came back today. It does in fact confirm that I am heterozygous for that gene. Translation? If I eventually receive irinotecan, I have a higher incidence of developing neutropenia (low white cell count and increased infection risk) + severe diarrhea compared to the general population. For heterozygous this can generally be overcome by lowering the dose – nice to know in advance, don’t you think? You can see the results and comprehensive explanation on the report HERE.
On 3/11/2022 I called my local oncology clinic due to only liquid “stools”, constipation, blood. “Come in for an evaluation”. Ordered another CT Scan just one month following the last, and another paracentesis (11 days following the last drainage of 2.5 Liters), and eventually will get GI consult depending on results.
The kids strike again
Shirah came right over, spent the day bringing me to oncology then to CT scan, but of course Robin stayed home to watch baby Asher. Sarah hopped on a train, due in town the next day, 3/12 and Hannah wants to spend her maternity leave here with her entire family. I’m overwhelmed with love and can eventually pass knowing that all our children can take care of themselves, their families, my wife Robin, and those precious grandchildren. As hard as it will be leaving all of them, I will rest peacefully knowing they will be able to carry on with a deep hole in their heart, but they will be just fine.
A few hours after we got home from Dr. Onc, Shirah brought me to the hospital clinic for a CT scan. The paracentesis had not yet been scheduled. This was pretty much our day, or so we thought. At the oncology appointment in the morning, I was told that if I developed acute abdominal pain and/or nausea/vomiting, I should go directly to the emergency room – which I delayed as long as possible because of the crazy long waits.
Up until now my posts have been discrete when it comes to mentioning names of institutions, but there will be no-holds-barred this round.
Emergency room medical care lessons
At 9:30pm I traveled by ambulance to Albany Medical Center, a true emergency due to possible bowel obstruction leading to perforation. Shirah met me there and Robin stayed home with the baby, while Shirah’s hubby stayed with little Asher’s sister at Shirah and Jeff’s house. After being brought into the ER, I waited one hour for them simply to access my central line IV port to draw bloods – I could have ruptured my bowel by then. I asked for ondansetron (anti-emetic or anti-vomiting med) and pain meds. Ondansetron was given at time of IV access. As of 2PM, no pain meds; I wasn’t even offered as much as a Tylenol for my entire ER visit. The IV port was accessed and left for 2.5 hours with only saline (could have clotted) requiring a surgical replacement. I hadn’t eaten or drank anything substantial in almost 2 days. Finally, after begging, I got someone in to hang an IV bag. But what did they give me? Normal saline (that’s 0.9% sodium chloride in water) with no additional electrolytes. I’m like, WHAT??? If that wasn’t bad enough, it was hung by gravity feed without a pump to ensure an accurate infusion rate and to alarm staff in case of in-line bubbles, INTO A CENTRAL LINE no less! I’m like, WHAT?!?! Why don’t I have an infusion pump? Why am I not receiving some potassium IV and/or Ringer’s Lactate? Lactated Ringers solution contains sodium chloride, sodium lactate, potassium chloride, calcium chloride dihydrate, and water.
I questioned the nurse. She said she’d bring in a pump – didn’t happen. Several people, perhaps 8-12 waiting in triage rooms got up and left the ER after waiting for hours – some bleeding, some vomiting. As the gravity feed IV bag was running out, I couldn’t find a nurse to come in, disconnect it or hang another bag to keep my IV port from clotting. I had to slow the drip down myself so the fluid wouldn’t run out. A nurse finally came in to disconnect the bag, but then another 2.5 hours of waiting and the IV port was again left unattended. I was about an inch from disconnecting the IV and driving home with Shirah, who was there the whole time, and flushing the IV port myself at home with saline and heparin. I was finally seen by a doctor at 4:15AM and was discharged at 5AM (8 hours). I received 1 bag of IV salt water, a blood draw, and a single dose of ondansetron. And what was their excuse? We’re short-staffed. The way I see it, in a for-profit healthcare system, if you’re going to offer a service, pay the staff what they deserve and make sure there is adequate staff to provide the service. If you can’t do that, you have no business treating patients. In my opinion, they need to hire more ER doctors, NPs, PAs, and nurses, and the money should come from the top executive salaries that are hogging the wealth while “bleeding” the ER (and community) of what is really needed. To see their salaries, just click this link – it’s disgusting! Perhaps if insurance companies created an algorithm of a reasonable visit time, and patients were electronically tracked for visit time, and the hospital had their visit fee reduced for each 15 minutes past a reasonable treatment time, then something would happen. Afterall, such a chaotic system is unsafe for patients and diminishes health with each aggravating visit.
DISNEY – will it happen?
The ER fiasco was now behind us. Sarah was here for the weekend, and Shirah and Jeff B were ready to stay with me if I was too weak to travel. March 15th (Monday) was the paracentesis – Robin brought me, and yes, another 2.5 Liters came out 11-days after the last time. But I felt great as soon as the catheter started sucking out that fluid!!! I’m thinking, maybe I’ll actually make it to Disney. I contacted Dr. Onc and asked for a few days of dexamethasone to help me eat and provide some energy. My plan was that if I couldn’t eat and drink for at least 2-days prior, I would not go. This left me Mon-Wed to make that assessment. He/she gladly agreed and ordered a 7-day supply of dexamethasone.
The night before Disney, 3/16, packing was brutal due to lack of energy. I was so fatigued that I literally held on to each dresser drawer and handed my clothes to Robin to pack. Obviously, the dexamethasone hadn’t yet kicked in. Time to add an iron panel to next Tuesday’s bloodwork. Dr. Onc was in agreement, and it was ordered.
Disney travel fiasco, oh my
Andrew and Sarah took all steps to ensure a “magical experience” including a car service from Albany to LaGuardia Airport (LGA) where we would meet up for the family together to occupy the first-class cabin! The LGA Delta flight after two delays was cancelled. There were no reasonable options to get us to Orlando via Delta, especially with two young children in tow. Andrew in his usual fashion, with his lemonade watchband and matching cell phone case, took command. He got us all a new flight on Jet Blue which entailed two separate Ubers to JFK from LGA. It was a nightmare timewise because our TSA #s didn’t match up and we needed to fix that because lines were so long that we would not have made it to the gate. Only option was to wait in a long line for the TSA correction.
Thankfully, from the start of the trip at both airports, Sarah remembered!!! “When Daddy gets too old to walk, what will you do?” She and Andrew made sure I always had a wheelchair at the airports. It was an exhausting trip but….
We made it!
We arrived around 7:30PM on Thursday 3/17/2022.
Early the next morning we all got up from our enjoining rooms, grabbed breakfast, and headed to day 1 at Disney’s Magic Kingdom. The answer to the question of whether it was worth the trip was easily answered on the first day. There isn’t one word to describe Silbie’s face when she met the Disney Princesses. It was a combination of anticipation, intimidation, enchantment, excitation, jubilation, and a warm charm that lives in every little girl’s dreams. YES, it was worth every inch of strength to get there, and it would not have happened without the encouragement of my kids (and Robin). They gave me an out – Shirah would stay with me at home with baby Asher, and her husband Jeff would join us with Princess Aria for the weekend. Yes, Sarah and Shirah led me to the edge and left me to make a choice.
The opportunity to make memories was gifted to me by my kids; the ultimate feasibility and final choice was mine. That’s what Robin and I taught them, I guess.
We had VIP passes and a private tour guide to make life “magical”, and Andrew and Sarah got me a scooter – even better than “push me”. It was a very long day, followed by a wonderful dinner. It was exhausting but worth every moment. And finally, here’s me after dinner!
Beer and Kahlúa versus “chemo buds”. What works?
Day 2 at Disney was Animal Kingdom but I stayed behind by the pool all morning and some of the afternoon where I was joined by Silbie and crew around 2:30PM. Not that I advocate any alcohol in my condition, but I thought a drink or two wouldn’t do any harm. Any sweet cocktails taste horrible to me due to oxaliplatin toxicity to the tongue sensations innervating the tastebuds. But I have learned that I’m generally better with bitter and tangy sour (limes, lemons) tastes. So, turns out beer or a coffee based Kahlúa drink works. One of each over 6 hours was perfect.
On day 3 we had a bonus. Andrew and Sarah had planned a nice elaborate dinner at Disney’s Polynesian Village Resort where we stayed. Turns out that it was also my brother’s birthday. Since brother Terry, my father, and his partner Davida all live in the villages about an hour away from Disney, they wanted to drive down and join us for dinner. Andrew to the rescue again – he was told the reservations couldn’t be changed from a party of 7 to a party of 9. He went directly to the restaurant and charmed his VIP way into 9. Gotta love Andrew!
What’s my medical status and lesson/implications on steatorrhea?
Over the last two weeks, but especially in Disney, I developed steatorrhea. Did you ever have a “floaty” poop? If so, it’s because it’s got a high undigested fat content which floats in water. In my case, it was clear fluid, hence the term steatorrhea. It seems to have subsided some – perhaps from all that great food in Disney. Things to watch with steatorrhea are dehydration and if it continues, supplement with all the fat soluble vitamins because you can become deficient in vitamins A, D, E, and K which can also contribute to anemia and decreased energy (<<<definitely me lately).
- All my general cell counts were normal or improved today (CBC, WBC, PLT).
- All my electrolytes were within normal limits today.
- I asked for an iron panel, the results of which won’t be back until after chemo today, but if indicated I can get IV iron later in the week (I’m betting a YES on that) on low iron snd possibly ferritin.
- I asked for a TSH (thyroid stimulating hormone) to be added today just in case I am hypothyroid – that is pending.
- I feel like although I have some accumulation of peritoneal fluid, that it is minimal compared to previous, although the NP today believes there is at least some fluid so she ordered another paracentesis – we also discussed the possibility of placing a port in the abdomen if I require frequent drainage so that I can do it myself. She was in agreement and the procedure is scheduled in 3-days, just prior to a visit from the DC angels Jason, Lindsey, Jonah, and Penny.
My kids; my parachute
Last week I learned that my kids are “scheming” by streaming. It turns out that they are having weekly “super-secret” Zoom meetings with “Daddy Updates” and plans. It now makes more sense to me how coordinated certain key messages have been. The constant plans for memory-making and grandchildren visits, and the coordination of those visits, constant attention, and more carrots to grab onto each week to elevate my energy and will to make the next milestone visit or trip are endearing to say the least. I did believe there was a time where they were in denial, but the truth is, it was probably more me.
In closing, I want to answer a question that has been posed to me many times over the years. “Why did you have four children?” I didn’t really have a clear answer for that many years ago, except that Robin and I love kids. Today I have the answer! My children have elevated me through this horrible cancer experience, each holding one corner of a square parachute to prevent me from falling. There’s been highs and lows, but I know in my heart that eventually all four of them will place me down gently to rest. In the meantime, I will continue to float on their strength and love while making memories for whatever time I have left.
Comments are enthusiastically welcomed. I love receiving comments on various social media platforms (Facebook, Linkedin, Twitter), but please also paste those comments on here if you have time!
References
- Takano M, Sugiyama T. UGT1A1 polymorphisms in cancer: impact on irinotecan treatment. Pharmacogenomics and personalized medicine. 2017;10:61.
Jeff,
Although we met just a few years ago, you have my admiration for the love you and your family have for one another. The way they rally around you and Robin is truly inspiring. I am so proud to call you, Gil and Hannah colleagues and friends across the miles. If prayers help, please know that you are in ours today and always.
Wow! What an incredible family. What effusive love, kindness, caring, fun and joy you represent and share so broadly, Jeff. It radiates to each life you touch, and their are countless lives you have gifted with hope and happiness. It is such an incredible honor to know you and your family, something me and my family are thankful for everday.
What beautiful trips! I am elated you made it to Utah and to disney. The magnitude of love in your family is radiant and palpable. I am sending you loving kindness and peace in this moment.
You are a great inspiration to many pharmacists including myself. I’m so glad I had an opportunity to meet you in Florida while attending an industry sponsored advisory board meeting. Even in the midst of a health crisis you continue to teach us pharmacology lessons. 🙂 You are blessed to have a loving and supportive family. Continue to make magical memories with them.
Beautifully written as usual. I’m so glad you got to Disney. Keeping you in my thoughts.
Jeff,
In addition to making the best family style lemonade imaginable, you’ve still managed to compound some mean limoncello for caring friends.
You and your family are a true inspiration and testimony. Thx for these personal insights.
Thank you for sharing the intimate stories of your most loving family! Absolutely touching! Keep smiling! Your strength and love is everlasting and will carry on for many generations through the hands, feet and voice of your proud family! Lots of hugs! ❤️❤️
Hospital staffing is so bad that with Covid, extremely low BP, I was sent home from the ED twice before finally being admitted. Staffing is so bad that my 500 bed hospital is down to 120 beds. The remaining staff is really inexperienced. My arm looks like a pin cushion from multiple attempts to find a vein. My MD daughter in law in Oklahoma was leading my treatment. After 7 days I was happy to be discharged, although on oxygen. Lack of care and incompetence.
Jeff you and your squad are one amazing bunch … you inspire us all and continue to educate and motivate us as HCP to fight the fight as both a patient and advocate for our patients ..
The family and life lessons are so amazing. The networking continues with each of their own families and they now continue in your footsteps…
The love you share with each of us is surrounding you all during this journey..
And heh at least u didn’t fight Argoff for the prime parking spot at Albany airport
Love and prayers to you all ..
Jeff
A magical Disney trip coordinated by princes and princesses for their loving and life giving father.
Each child supporting a corner of the tapestry of life.
It takes a fantastic dad and mom to raise such extraordinary children. Mazel tov to you and Robin on a job well done. Enjoy some more grandpa time
PS Alexis and I took turns tearing up over lemonade.
Love you
Jeff – I am very grateful that I had the opportunities to get to know you and Robin (as well as her brother) through Andy. You and your family truly exemplify living life to the fullest! May peace and comfort be ever with you. Andy’s heartfelt text exchanges with you have become a cherished point in the week. You remain in our hearts, and we’re so grateful to have had that time in January with you. <3 Alexis
Love you dear Snorkelman!!! Your kids are the absolute best and you are spot on… let them do what they need and catch them if they fall! Worked for us too!
Jeff – as you know, I have loved you and your family for many years. I have been so pleased for you and thankful for all the love expressed to everyone in the J Fudin fan club. I appreciate your incredible vision over the course of your disease and I am so very hopeful you or one of your parachute supporters will record and publish this beautifully sensitive and incredibly insightful view of who you are and what you have endured. Each of us has grown so much through your wisdom and your willingness to teach even simple lessons. Praying for strength as you continue to make decisions throughout this season.
I hope above all you wrote to the chairman of the board for Albany Med Ctr and in addition you paid him a visit and spent time reclining on the sofa in his office!!
Love to you all ❤️
Thank you for all the updates, Jeff. It is all so exhausting for you and yours, but so worth every new memory you accomplish with your beloved family. Just to know what to ask for at every turn is mind-boggling! Fred and I are holding you all in our hearts.
You are blessed sir! So glad you got to Disney for those memories and you amaze me with every post…
You’re a great reminder that days shouldn’t be wasted and time is precious. We all need to cease opportunities Compliments on sharing the challenges and strengths; it’s unimaginable. Keep going, one step at a time! Love, Doug
Glad to hear that your Onc doc was compassionate enough to provide you with the dexamethasone so that you had energy to get to Disney. When my brother was fighting cancer and we were taking him to Disney with the kids, we begged his Onc doc for dexamethasone and they refused. Luckily a compassionate primary care doc was more than happy to help and provided him with a short regimen so he could go. It was baffling to me that a provider who operates in a field that requires compassionate care was so unwilling to help provide quality of life to a patient. But then again, all of your posts seem to reinforce how much a patient has to advocate for their own care.
Jeff,
I have read each of your posts and am in awe of your writing, candor and willingness to share your journey. You are an inspiration. You keep the medical professionals on their toes and buck the insurance companies when needed. Keep up the good fight!
You and Robin have raised amazing kids! Your grandchildren are beautiful.
Sending hugs from me and Tony!
As always a genuinely wonderful post. So glad Disney happened!
I have tears reading about how poorly you were treated in the er. It gives you pause to think about the 98 percent who don’t have the knowledge base you have to realize how badly they are being screwed by this current system. Prayers and God bless on your journey.
Loved your blog. Your kids are a testament to you and Robin and you should be so proud
Proud is an understatement. Thank you Joyce.
Jeff and Robin..,I am so happy for you both that you have 4 wonderful kids and they have such awesome spouses…especially Andrew!!! I just love that guy and I’m so glad he was able to iron out things the way he did for your trip…what a memory for you all! I’m sending lots of positive energy to everyone….God Bless you both and your family
Jeff and Robin
How very blessed you are and what great kids you have raised…blessed my heart to have read this…
❤️❤️❤️❤️❤️
You are an amazing couple and you have raised amazing children. I love you all.
Albany med is great if you tell them you think you’re having a stroke, you get immediate attention. Lead with that one next time and then sneak in the cancer thing. Sorry you had to endure that as well! Your kids are amazing. They are doing such a good job of making Daddy time! You and Robin have done a great job! Love and kisses!! Mary
P.S. ambulance arrival sets off the neighborhood drum beats. You posted something the next day so that got passed around so we knew you were okay. You have no privacy!
No privacy among neighbors for me is just LOVE! Thank you Mary!