Today I sit for chemo cycle 18. This is actually a “lucky” milestone, although most of my readers are probably wondering why. In gematria (a form of Jewish numerology), the number 18 stands for “life”, because the Hebrew letters that spell chai, meaning “living”, add up to 18. Hopefully we’ll soon find out whether my switch from bevacizumab back to oxaliplatin ultimately lives up to that “chai”.
But the real excitement these last three weeks associated with 18 (aka “life”) was the arrival of two new grandsons on opposite sides of the country, healthy moms and the dads that survived all the stress and excitement as part of the deliveries.
Topics today designated in bold type include:
- Standup Comedy
- Lessons throughout
- Flight Triathlon to Utah
- The Bris (Brit Milah) and related medical lessons
- Anticipated trip to Disney World
- Blog dedication
Once again, it was a very eventful two weeks since last treatment. Before I get into that, during a long trip to Utah (outlined below), I got to thinking about the irony of cancer treatment, as I had so much time to daydream during a long journey [alone] to Salt Lake City (SLC). It’s no joke that many standup comedians have their own medical misfortunes to overcome, such as depression, anxiety, childhood trauma, as seen in If Laughter Is The Best Medicine, Are So Many Comedians In Poor Health?
Here’s how that daydream went; If I was a standup comedian, my routine might go something like this… …”
I’m here tonight to tell all of you in the audience that I have a non-curable cancer. Before we start, please all drink the shot of limoncello being passed around by the wait staff. Although on the surface, it’s no joke, there does seem to be a satirical type of humor here. To the audience, if you know someone with cancer, my apologies, but seriously we need to put things in perspective so we can all laugh instead of cry.
I go to my first clinic appointment in June after learning I have cancer. Essentially, here’s how it goes.
Keep a smile on your face because we can treat you. If you can’t be happy about this, we can send you to palliative care for counseling and support. The sign on their door says “don’t worry, be happy”.
We will continue to inject poison into you until you die. In fact, we’ll be at your funeral until they put the last nail in your coffin. If you’re Jewish and they don’t allow hardware in the coffin, we’ll just continue the infusion until you’re 6 feet under.
When you die, on the way to the graveyard we will continue chemo just in case you wake up. We’re pretty sure that your health insurance won’t cover it, but we want to suck every dime out of them just in case. Don’t worry though, once denied by insurance, the clinic will bill whatever isn’t covered. Your family can pay the tab, but since health insurance doesn’t cover corpse chemo, you probably have life insurance that your family can use for your death. Hey, maybe they should call it death insurance.
Here’s how we’ll proceed. First we’ll blast you with radiation, then when your down, we’ll kick you with chemo. Don’t worry, it’s sort of safe. For radiation exposure, the technicians have badges that measure their exposure, and they will leave the room so that they aren’t exposed. The pharmacists that mix the chemo have a special air flow hood, thick gloves, a silicone laced heavy duty gown to protect their clothing, and a mask so that no part of their body is exposed. You however are lucky because the radiation goes right into your body. And the chemo goes right into your bloodstream. But hey, most patients tolerate it all just fine. Here’s a list of the 100 most common chemo side effects, including death, for each one of your drugs. I know you’re probably confused with drug names like bevacizumab, but don’t worry, each drug has at least two different names (brand and generic or biosimilar) in case you forget one. In this case of your bevacizumab, there are several alternate biosimilar brand names, approved by insurance carriers from least to most expensive; Avastin, Mvasi, and Zirabev, so you only need to know 4 different names for one of your 6 different treatment drug regimen – we do this to confuse you in case the chemo doesn’t fog your brain enough. We also do it so that you have no idea what’s going on if you have a gripe with our copay bill or the insurance company – that way you can’t argue with either of us because you’ll sound like an uniformed idiot, and more likely than not, after waiting on hold for 30 minutes, the clerk you speak to won;t have a glue what you’re talking about, but will answer your with a templated answer as though they have some sort of clue. The truth is, your doomed anyway.
In summary, we’re going to poison you to treat your disease, then we’ll monitor your progress by exposing you to radiation every 2-3 months with a CT scan or other imaging techniques. Oh, by the way, the chemo and radiation exposure can cause other kinds of cancer, but that’s okay because we’re just focused on the cancer you have now. Your insurance company will tell us what we can and cannot do and will ultimately have the last say in what medications and procedures are acceptable. My question – are they oncologists? Well of course not, the insurance company isn’t going to pay someone that highly qualified to make life and death decisions for you. Hmm, what are you thinking- maybe we should check your brain for metastasis – we can avoid radiation by doing an MRI, just an added copay – no worries, I’m sure you can afford it!
The cheapest medications are first line. If you qualify for second line therapy, your copay might kill you before the cancer. Win-win. Go home and read these 100 pages of materials that mostly will seem like another language and you won’t understand. By this time you’ll be so overwhelmed medically and psychologically, you really won’t care anyway, and if you do care, you’ll have no energy to do anything about it. Sign these ten documents acknowledging we aren’t responsible for anything, and good luck. And remember, the patient always comes first. See you next week to begin treatment.
On a more serious note, as outlined in my previous blog post, there was concern of possible disease progression even though no new tumors or metastasis were identified by CT scan. Dr. Onc did however agree after palpating my abdomen one week earlier that there was likely fluid in my peritoneum (abdominal area in which various organs sit such as stomach, liver, small and large intestines, spleen, pancreas, etc). In the meantime, I was finding myself for months needing to take meloxicam (an NSAID analgesic), and more recently had also required around-the-clock dosing of acetaminophen. I believe I had fluid (known as malignant ascites) in there for a very long time, but previously it was a smaller amount apparently not easily identified to be problematic enough via palpation or ultrasound, even though Dr. Onc previously agreed to order such imaging and a paracentesis many weeks ago after we discussed it. Good news is that on two days after my return from Utah, Robin (half asleep) at 6AM following that long trip back from SLC, drove me for a paracentesis procedure which is a short and painless. It involves placing a catheter in the peritoneum through the abdomen, and draining the fluid into and bottle that has negative pressure. Ten minutes later, oh my goodness, in addition to my two daughters that had babies between February 4 and 22, I felt like another had just been delivered out of me (without the labor of course). Here I am on day-3 post paracentesis, and I haven’t needed any analgesics (meloxicam or acetaminophen).
What’s the lesson here? Be persistent. I exposed myself (although with meticulous circumspection) to toxicities of an NSAID and acetaminophen and potential drug-drug, drug-organ toxicity interactions with chemotherapy for no good reason, as the fluid pressing against my organs and back was obviously the culprit all along. There would have been no harm in tapping my peritoneum by symptoms alone regardless of imaging showing “less than 20cc’s of fluid”.
Gotta love Sarah. While awaiting my meeting with Dr. Onc two weeks ago regarding possible disease progression, I told Sarah I’m aiming for at least three years survival, hopefully more (especially if I can qualify for a vaccine study) and that I’m keeping a positive attitude towards living life. She said, “Let us know how the conversation goes Friday… 3 years is more than 3 months and if you’re trying to live every three weeks to the fullest, 3 years might feel like a lifetime 🤗 I’m not giving up either.”
My wife Robin left for SLC on 2/14/2022 first arriving in NYC for an overnight with my in-laws, and then off to SLC by direct flight on 2/15/2022 to be with Hannah and Kris during Hannah’s anticipated baby delivery and to help. After Robin learned I had possible disease progression, she felt sad and considered taking the train back to Albany to be with me because she was worried. I assured her that I was fine emotionally and that she should continue to SLC, although I know she was torn up about the whole thing. So off to SLC she went. As outlined in the last post, Jason came up from DC to stay with me and then extended that stay for 8-days until the day before I left solo to SLC to join up with Robin and crew.
Thankfully my niece Genna was in SLC to help and keep Robin company as each past due day slowly crept by after which Hannah and Kris powered through a very long labor that ultimately ended in a C-section following 30-hours of labor carefully overseen by a highly qualified and compassionate midwife at a nearby birthing center. Her due date was 2/10/2022, but baby Jethro finally arrived instead on 2/22/22 (kind of easy to remember).
Flight triathlon to UT
New baby Jethro Colley arrived to the world one day prior to my SLC arrival on 2/23. I was up 22 hours straight that day. There was a 1-mile walk from final destination exit door to baggage claim (4000 feet above sea level and N95 mask with ascites fluid pushing up on my diaphram, no doubt lowering breathing capacity). Incoming flight was packed, the woman next to me was large, the one at window kept getting up to vomit. Several plane delays on tarmac,and my back and abdomen were quite painful, probably from the ascites. Then I tried to snag an Uber because everyone in SLC was so exhausted and Kris was at hospital helping Hannah. They kept cancelling my Uber request, but finally I got one. Robin and Genna tried to stay on top of my journey from airport to Hannah and Kris’s home, and they kept calling and texting. But, it was so cold outside, I could barely hold my phone to text back due to oxaliplatin cold-induced neuropathy. But, I made it and was happily anticipating an opportunity to hold that little bugger in my arms very soon. I tolerated the chemo just prior to my trip just fine, but it had a toll on exhaustion when combined with that long journey to SLC. Also, I needed to check a bag because I had my backpack and a soprano sax (which I planned to play at the Bris celebration – more to come on that below).
Brit (also called Bris) you ask?
On day-8 following the birth of a Jewish, male, there is a celebration during the circumcision. To learn more about the origin of that, see Brit Milah: The Biblical Origins.
There is a medical lesson here. When a baby is circumcised in a hospital less than 8-days from birth, it is routine to inject them with vitamin K. That is necessary to prevent bleeding. Thousands of years ago (similar to reasons for kosher foods and health reasons), the Jews knew that there was a higher risk of bleeding after cutting the foreskin prior to day-8, but they didn’t know why. The reason is that the baby begins producing vitamin K necessary for clotting, on the eighth day. No need for that injection on day-8 – pretty cool! So, we had that celebration, the only of my three grandsons to have this ceremony. The person who usually does the procedure is a moehl, generally a Rabbi that is specially trained and certified. There are two moehl’s in all of Utah, neither of which were available on day-8. So, Hannah and Kris had a pediatrician at their home and a Rabbi. Almost nobody in live attendance had ever seen a brit. One common tradition is to dip a piece of gauze in alcohol and have the baby suck on it. It was celebratory, fun and heartwarming to see a Mormon pediatrician do a house call, see past his own beliefs of no personal alcohol ingestion, as the Rabbi performed the ceremony in tandem and placed a manischewitz wine saturated gauze in little Jethro’s mouth.
Kris and I followed up with a rendition of simcha (Jewish party) type music on drums and saxophone, while local attendees participated, and 15-20 friends and relatives observed on Zoom.
Click on this LINK to watch the video of Kris and me.
What’s next on the life agenda?
Our planned trip to Disney World is scheduled for departure on 3/17 with Andrew, Sarah, and our two granddaughters Silbie and Boombah. I will be asking Dr. Onc for a short supply of dexamethasone to energize me for a few days just in case need it, but we will have a scooter there for all the long walking around the park. Can’t wait to take the granddaughters on that!
We interrupt this blog for a short lesson update….
Here I sit in chemoland. Recall last post I mentioned that I would ask Dr. Onc to order a UGT1A1*28 genetic test to ascertain if I would be highly susceptible to irinotecan-induced neutropenia should I end up on that drug in the near future. This could be avoided with a drug called Neulasta (aka pegfilgastim) which stimulates pluripotent stem cells in the bone marrow to increase output of white blood cells. I had all my blood work done three days ago on Monday. The RN just came over to me and said, “They forgot to add that vial of blood last Friday even though Dr. Onc ordered it. So, we’re going to take blood from your arm.” My response; No thank you. Please take the blood from my central line port that is already accessed and from which you are infusing my chemo right now”. RN; “Well, after the infusion is done, I’ll flush the line with dextrose and then hook up your portable 5-FU infuser for home, so not sure we can do that.” My response; “I understand that you have routines and policies, but this is not acceptable and there’s no reason for it. Please let me explain – when my chemo is done, flush the line with 10cc’s of saline, pull out some blood for discarding, obtain the vial of blood for the genetic test, then flush with 10cc’s of dextrose, then connect the portable infuser – no need to stick my arm. I’ll want to preserve my veins from unecessary pokes and it makes no logical sense not to use what is already accessed. Please check with whoever you need to and we can discuss again. Geeze, are clinicians not taught to use common sense? Ooooo, I can answer that – NO!!! The reason I’m a stickler about this is because there may come a time that I’m hospitalized with an infection, let’s say because I became neutropenic (very low white blood cell count) which causes an infection, then I’m hospitalized and the oncologist, nutritionist (for IV nutrient feeding) and infectious disease docs argue about who gets to use the port for their drugs – while they knock heads together, I want to make sure my peripheral veins are in tact and easy to access. Hmmmm, how could this happen? Maybe if I went on irinotecan and nobody did the UGT 1A1*28 test I asked for to predict for this in advance – ahhh, the circle of live to avoid death. Ultimately the nurse did what asked after checking with [who knows], but I’m guessing the doctor and pharmacist. I’m sure if Dr. Onc was contacted, she told the RN to just call the pharmacy because by now she understands me and I think is respectful of my background and expertise. The RN was told she could do it but had to use 30 cc’s to flush the line. I’m thinking 30cc”s, why so much. According to the RN, it’s because they needed to clear the port. Teaching point here? There’s room for 5cc’s from the port to the end of the line that sits in the heart. One beat of the heart clears the blood. So 10cc’s would have been more than enough, but what the hell, I could use the extra hydration equivalent to a single shot of alcohol in volume. The kicker in the end is that it was more convenient for the RN to inject three separate 10cc syringes filled with saline instead of the pharmacy providing it in a 30cc syringe (think time and money). Why should we care? Because each time you inject a port it increases risk of infection, so why do in three injections what you could do in one, especially since just one 100cc syringe of saline would have been adequate. But hey, what do I know?
Wrapping up with a salute to Ukraine
My grandmother on my mom’s side and both grandparents from my dad’s side came here to the U.S. from the Ukraine in 1913, just before WWI in 1914. My maternal grandfather was from Hungry which of course borders on Ukraine.
The way I see my current situation is that my peritoneum is Ukraine and the tumors invading are the senseless enemy armed for havoc, destruction, and death to live in freedom. Like the current situation in Ukraine, the tumor army may be larger and difficult to predict. But, within my blood flows the Ukrainian desire to bear arms and use all the tools at my disposal to fight the intrusion of this enemy within.
This blog of hope is dedicated to the brave soldiers, citizens of Ukraine, and even the Soviet soldiers who were lied to and/or may be forced to fight against their will, and to all of their families. This is the land from which my grandmother and grandfather fled during the invasion from Germany. My dad’s mother was the only one from her parents and siblings to survive the German invasion in 1940 which came much later than their departure from Ukraine in 1913 due to unrest and persecution. Notice the fruit symbolism in the featured image, blue and yellow (lemons) fruit framing our two youngest grandsons.
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