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.
- 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!
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.
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- Takano M, Sugiyama T. UGT1A1 polymorphisms in cancer: impact on irinotecan treatment. Pharmacogenomics and personalized medicine. 2017;10:61.