You know it’s all right, it’s okay
I’ll live to see another day
The news that my cancer has metastasized to Stage IV oligometastatic peritoneal cancer, frankly, is a big letdown after having endured so much. And it’s a bit of a mouthful when using big four-dollar words like oligometastatic (I’ll save you the trouble of looking it up: basically it just means it has spread to less than five areas of metastasis).
I am a little surprised that I haven’t felt any kind of emotional breakdown. I haven’t even cried about it — maybe that comes later? Instead I feel just a weird sense of peace. It is kind of a blessing to have some idea of when my end might come. I know there will be some really sucky days ahead, and I pray for the strength to endure those days with some measure of grace and that I can keep my optimism and personality intact. I really don’t want the people around me to suffer, and I don’t want to be remembered for whatever wounded personality I might have at the end.
I would rather be remembered for loving everyone unconditionally, without judgement, and for encouraging everyone I love to be the very best version of themselves. Love is the most powerful, limitless, and absolutely radical thing I have ever experienced in my life. It uplifts and transforms; it sustains and heals.
So forgive me if I wax sentimental for a moment here. For me, all moral, religious, and spiritual meaning begins and ends with these three simple words: God is love. Everything else flows from that, and life clicks into place. You don’t even have to believe in God; maybe you could just shave that little tautology down to LOVE. Or maybe love is all you need, if you are a Beatles fan. Every choice you make, every position you take, ask yourself if you are choosing love, or are you choosing something else?
No matter where I find myself in my relationships, my work, or even while driving my car (this last one is a difficult, ongoing work in progress for me), my thoughts keep coming back, decade after decade, to this simple passage from my favorite chapter in the Bible:
Love is patient, love is kind. It is not jealous, it does not boast, it is not proud. It is not rude, it does not seek its own interests, it is not easily angered, it keeps no record of wrongs. Love does not rejoice over evil but rejoices with the truth. It bears all things, believes all things, hopes all things, endures all things. Love never fails.Corinthians 13: 4-8
You’ve heard it at probably every wedding you’ve ever gone to, and for good reason. It should also probably be read at the start of every friendship, at every reunion, maybe sung in place of the National Anthem before ball games, and definitely spoken aloud — repeatedly — at all political gatherings and sessions of Congress.
I’ll repeat an earlier sentence now, as a transition back to Earth from my heavy little theology: love uplifts and transforms; it sustains and heals.
I am so thankful and grateful for all the reaching out people have done in the last weeks, sending messages, cards, books, hugs, thoughts, and prayers. Being surrounded by the warmth of so much love lifts my spirits and fills my days with joy. Thank you all so very, very much.
The Big Sugar Embargo
I am trying everything that I can to enjoy every day and not to make things easy for the cancer to grow. There seem to be (at least) two schools of thought about treating cancer: first, that cancer is a genetic disease that can be eliminated by finding a drug that targets mutations and delivers powerful poisonous drugs to the cancer cells and kills them; second, that cancer is a metabolic disease caused by, frankly, me being a fat diabetic pig who was playing with fire by eating sugar, and got burned when it supercharged some baby cancer cells and caused them to go haywire.
The basic problem with colorectal cancer is that it starts slowly and gains a huge number of mutations along the way, figuratively snowballing down a mountain of sugar towards oblivion. You can treat it with chemotherapy but if the chemo works, at best it kills off most of the cells and those cancer cells that survive are the ones that are mutated to be resistant to the chemotherapy drug. So you have to change to other chemotherapy drugs that might work on the resistant strains, and most of those can be killed with the right drug… but you might waste 12 weeks on each drug change to see if it’s working, and if it isn’t you only have a short period of time before you run out of options. If it is working, you have a short period of time before the cells that survived the second drug proliferate and need to be attacked with a third drug. Chemotherapy is a losing game of whack-a-mole.
You read every week about a new miracle drug that’s been developed that cures 99% of the population it was tested on, so you ask, “why can’t we try one of those drugs?” The answer is that those drugs are being tested in drug trials that take more than a decade to pass muster and get FDA approval. Everyone who has cancer now is like a ragamuffin little kid looking through the candy shop window at the shiny new drugs, wishing they could have one.
But what if there was a way to kill all the cancer cells no matter whether they had one mutation or a thousand? What one weakness do all cancer cells share that can cause your immune system to identify them and throw them on the autophagy fire? Even if you slow the cancer instead of destroying it, you can have more time to spend with your loved ones, maybe enough to watch your youngest son graduate high school… or even college?
I had started many months ago reading a book called How to Starve Cancer and a lot of the ideas in the book made a lot of sense. It takes the metabolic disease school of thought, where cancer is not something easily beaten, but rather something that feeds on sugar and glutamine, so you can eliminate it or hold it back by literally starving it.
Cancer cells have lost their mitochondria and aren’t able to use respiration (oxygen) to convert sugar into energy. Instead, cancer cells use fermentation to release energy from sugar, and it requires them to consume 21 times more sugar in order to divide, than normal cells do.
Lots of people have had success with 21-day water fasts to virtually eliminate their cancer tumors, but the moment they stop, the cancer usually starts to grow again. I think the fast is more risky and my oncologist doesn’t want me to lose weight.
From other sources like Jason Fung’s The Cancer Code I gather that intermittent fasting and keto diets can put a lot of stress on the cancer cells so that when they are exposed to chemotherapy, they are more easily destroyed. Cancer cells can’t use ketones whereas your brain and body are able to use them fine, after a short period of adjustment. As an added benefit, studies on mice show that in a fasting state, they suffer fewer symptoms from the chemotherapy because in a state of glucose scarcity your body’s normal cells go into a protective maintenance state that helps them survive the chemotherapy, and cancer cells have lost that option entirely because they are stuck in a growth mode.
I am no expert in Keto diets, and I’ve always thought that most people who do Keto are a little crazy, kind of like those crossfit loonies, getting super excited over macros and other terms I don’t understand yet. But if it could slow down my cancer I’m all for learning a bit about it.
On the day of my diagnosis, May 22, I immediately returned to my strictest version of my Type 2 Diabetes diet. My endocrinologist really liked my results and encouraged me to keep them up, but it was a lot of effort. Basically the plan there was to take in less than 20 grams of sugar a day. Carbs from vegetables of any kind were okay, the more fiber the better, and with an eye towards foods with a low glycemic index.
This time, though, I was going to keep under 20 grams of net carbohydrates a day (so fiber grams don’t count). This was immediately successful; my blood sugar average for the next two weeks went from 143 to 99, and I never had a blood sugar higher than 112.
I resolved to take that approach while I learned more about Keto and incorporated it into my diet, all while following my oncologist’s orders and not losing weight. Spoiler alert: I failed at that. Dancing on the Keto stage while trying not to lose any weight is truly a perverted thing to attempt, but I’m trying it anyway.
So now I’ll talk about the turns my life took in the last few weeks, while I strictly avoided sugar of any and all kinds.
Memorial Day Adventures
It has been an eventful and interesting few weeks since my last post, and I’ll go into quite some detail of it here. Editor’s Note: there is so much random crap in these sections that I’m putting headings on each section so that you don’t feel guilty about skipping the irrelevant humdrum details.
Memorial day weekend came right after Tuesday’s scan and diagnosis, and my oldest son has been bugging me for a while to go for a trip to my sister’s beach house, and Memorial Day weekend seemed like the most sensible time to do it. There wouldn’t be a bunch of traffic or extra people in town, right?!?! On such short notice, due to the schedule of everyone’s days off, we had to leave either my wife or my middle child at home and go either Friday night or Saturday night. Our middle child wanted some relaxation time since they had to work on Memorial Day itself and would lose a day off in the process, so we made the drive to the beach on a very drizzly Friday night. We checked the weather ahead and double-checked everyone’s mood, as it would be 100% light rain the whole time we were there, but everyone was eager to go. We left around 7pm and traffic was not even remotely bad. We pulled in to the beach house around 10pm, ate some snacks of nitrate-free prosciutto and goat cheese, and I brought one of the now-aging 330ml bottles of Olde Hickory’s Event Horizon beer and sipped a couple teaspoons of it while my wife drank the rest. We went to bed shortly afterwards. I had such a peaceful, restful night’s sleep!
Also, everyone let me sleep in on Saturday morning which was a rare treat. We went to our favorite little diner for breakfast, Castaway Grill, and it was absolutely packed. We had to wait about 20 minutes to be seated, and only two waitresses covered the entire place with surprising efficiency considering it was short-staffed that day, and busier than I had ever seen it. Sure there were some little forgotten things like syrup and ketchup, and I got sweet tea instead of the unsweet I requested, but these things were resolved in a reasonable amount of time and with great kindness and cheer. Some cranky entitled customers grumbled a great deal about some very minor inconveniences and waits; but there is no making everyone happy, especially when they have forgotten the part of 1 Corinthians 13 that says: love is patient.
The weather was indeed drizzly on Saturday, and the wind gusts were almost strong enough to lean into and be held up by the force of it. We took a lengthy walk on the completely deserted beach, where the waves violently pounded the shore and each other, crashing loudly and sending spray everywhere. So many people really missed out on a lovely, energetic coastline that day. Afterwards we tried to go to lunch but all the people you would expect would be on the beach were in lines out the doors of all the restaurants in town.
We found a restaurant nearby called House’s Place at the Beach that Google Maps said wasn’t too busy. We drove there to find it was in the middle of a resort and plastered with members only signs. The important thing to not getting caught is to act like you belong there and doing so, we had a lovely meal of Caesar salads with rare grilled ahi tuna, peel and eat Old Bay-seasoned shrimp, calamari, a shrimp po-boy, and a burger with a fried egg on top. I wasn’t eating carbs so I made a crouton-henge on my plate. How clever, right? I decided I wasn’t going to play by their rules any more! I do as I please!
Then we lounged around the beach house, had ice cream in town (or more accurately, I enviously frothed at the mouth while I watched our kids have ice cream in town since I am avoiding sugar), and left town in the early evening, headed for home.
On Sunday, I drove up to Richmond to visit my old college friend, B. We went to our favorite restaurant, Kuba Kuba, and they made me a carb-free bowl of Cuban roast pork covered with melted swiss cheese, with a side of delicious garlic-sauteed spinach. It was completely off the menu, something they made for B. when he was doing low-carb some years back. It was unbelievably good! We went to the Roosevelt for dinner and I had the seared scallops with midland cream peas, garlic scapes, quinoa and lardo. I skipped the quinoa but devoured the rest. The scallops were perfectly done. Every dish at the Roosevelt is mouth-watering.
Monday was Memorial Day and I started by installing a lighted makeup mirror on the wall in the bathroom. Then I sat down in my recliner and got to thinking about stuff. I have all this stuff lying around. Some stuff that is broken and needs an hour or so invested in fixing it, or books I absolutely had to own but then only read once. I have lead-acid car batteries. I have a hundred plug-in adapters — power converters that would be a lot better situated at Toschi station. I still have a couple Buffalo LinkTheater units that I used to stream DVDs from a NAS before Plex ever existed. I have hard drives — even sizes like 120GB! Why did I keep this? Did I think I was going to live forever? Who has time to re-solder all the connections on 20 gaming headsets? What am I supposed to do with this PalmPilot? Oh, a Kyocera PalmOS Phone! X-10 switches? Good heavens.
I guess it is to be expected that there is something markedly different about your “save” pile when you get a terminal cancer diagnosis. I might have 2 years left or 20 but I won’t need any of this stuff in the U-Haul behind my hearse, that’s for sure.
It’s high time for a good day of döstädning, though I don’t think Swedish Death Cleaning was meant to be taken quite this literally. Regardless, a bunch of stuff went into the trash today, for electronics recycling, landfill, and the like. Stuff is going in piles for Freecycle, the thrift store, eBay, or the bulletin board at work. I like to think that my Memorial Day was spent de-memorializing some possessions, like the way a good degaussing removes a magnetic charge.
Working and Shooting Some Pool
I worked 3 more days in the work week, and I got to cap it off by playing in my Thursday APA double jeopardy billiards league. I won an 8-ball match against a rank 3 player (I am ranked a 4), in a 3-2 contest where I won 3 matches and they didn’t win any matches (scoring 3 points to 0 points). Then I beat a rank 5 player in 9-ball, 15 points to 5, meaning I sunk 31 out of 31 balls needed, and he sunk 23 of the 38 he needed. I was playing well, and was stoked to win since I have a secret fantasy that I will move up to a rank 5 before the end of my days. I feel like I’m close on this one, I’m winning 75% of my matches these days.
Visiting Family and My Trailer Woes
I took Friday June 2nd off work to drive up to visit my parents. I planned on bringing my minivan and trailer so that I could bring back some furniture a friend of my Mom’s was giving away to a good home. My two oldest kids are getting an apartment together in a few months and moving out on their own, and we’re trying to get them set up with the basics, and this would be a good opportunity for them to find some nice bedroom furniture. On hearing the plan to bring bulky objects home in the trailer, my oldest son wanted to come along and keep me from lifting and moving heavy stuff, and he wanted to get to visit his grandparents, and aunt and uncle there. We also thought it would be good for him to help decide what furniture he and our middle child J. would want for their apartment. Unfortunately he didn’t have the day off and got permission to stop working around 4pm to leave early. So we planned on getting up to my parents’ house around 8pm.
Not being able to leave before lunchtime, I decided to finish a couple tasks at work and attend a meeting, then I did a little organization in my garage and with the help of my youngest son J., we hooked the trailer up to the minivan and I tested the lights. Nothing happened. No left turn, no right turn, no running lights whatsoever. Not good. So I checked the wires and noticed the trailer ground wire had dry-rotted and broken, so I reattached it by stripping the wire and twisting it together. Nothing happened. I traced it down to another crack where the wire was broken, and stripped and twisted that one. I got a little glow from the right turn signal, but nothing on the left and no running lights. I was always worried about this trailer’s lights anyway, they were barely visible unless it was pitch black outside, and I have long avoided driving with it at night because I know I’ll get rear-ended by someone who can’t see the thing.
I had a plan before the cancer diagnosis, to completely re-wire the trailer lights. I had a $20 off coupon I got from Northern Tools for buying some scaffolding, and found a super-bright LED trailer light kit on sale for $29.99 (reg $39.99), and walked away with it for $9.99. Unfortunately I hadn’t done quite enough death cleaning to come across the unopened box of trailer lights, but I had several hours to kill before my son got off work, and I began a thorough search of my piles of crap looking for the trailer lights. I found them on the floor under some boxes and books, next to my rolling tool box, and set to work disassembling the lights on the trailer. I used the existing wiring to pull the new wiring through the trailer frame, split it to the left and right, and wire the orange marker lights. I got out my good Weller soldering iron and stripped the running light wires, soldered them to the amber marker light, grounded those, and used heat-shrink tubing to get a good water-resistant seal around the connections.
About that time my wife came home from work and I enlisted her help in handing me stuff, which she cheerfully did while we talked about all manner of interesting things. I discovered that one of the the steel tubes that are welded to the edge of the trailer bed, that protect the wiring as it goes back to the tail lights, was chock full of an advanced civilization of very, very, very tiny little black ants. I ripped the wire out, destroying the ant nest, before remembering I should have used the old wire to fish through the new wire, so my wife took on the task of cleaning out the tube with dowels and fishing the new wire through. I wired the tail lights in, soldered them and protected them with heat shrink tubing, and the completed job was a joy to behold!
We tested the lights: right turn works; left turn works; hazards work; but no running lights. It occurred to me to use my little trailer light socket test dongle to make sure the minivan’s output was working, and it wasn’t. So I concluded there must be a fuse somewhere that was blown, what with all the damaged wires we started this adventure with. I vaguely remembered when I installed the trailer hitch that there was an included fuse, but I had to search the internet to learn that it was passenger side fuse box mini fuse #5, 7.5A, that was burnt out. I went to two auto parts stores and was coming back when my oldest son was packed and ready to go, and he called to ask where I was and what in the world I could be doing. Soon I was home, the fuse was replaced, and the trailer lights worked brilliantly — by which I mean, they were bright even in the daytime.
We had a pretty uneventful trip to my parents’ house. My sister asked me when I called to let her know I was leaving, if I wanted to stay in her guest room or with my parents, and I said I should stay with the parents this time because Mom complained last time that she didn’t get to see me after I woke up, all the way until after we had breakfast at my sister’s house. So that Mom could get maximum exposure I would stay with Mom & Dad.
That was a big mistake. The 5th of June was the hottest day so far this year I think, like 85 degrees, and my parents didn’t have the air conditioning on so it was 82 degrees inside the house. I was sweating and dying, panting like a dog. My son asked if we could turn on the A/C and my father said no, he was just about to put on a sweater, it was so cold in the house and he was shivering. My parents would complain about the cold on the surface of the Sun. So my son slept downstairs in the guest room where it is cool and comfortable, and I slept in my old bedroom where the smoke from the fire and brimstone made me cough and choke all night. I closed the door and opened a window, and luckily it was cooling down outside so I got comfortable in a couple hours.
Saturday we went to the Juke Box Diner for lunch, it is a 50s-style diner but with Greek owners, so there are awesome foods on the menu like gyros and shawarma. The food was very good and we had a fantastic meal. The wait staff were brimming with hospitality and kindness, all in all a wonderful experience.
Afterwards we went to my Mom’s friend J.’s house to look at the furniture she wanted to find new homes for. My son settled on two dressers, two end-tables, and one kitchen table. We came back home, Dad brought us to Harbor Freight Salvage to buy a half-dozen moving blankets, tarps and straps, then we returned home and had a rest.
On Saturday night at 7pm my high school friend JK planned to pick me up for dinner and visit a little with my parents. We had an 8pm reservation I think, at a restaurant of his choosing. But when JK showed up, he had our friend YK with him. I haven’t seen YK since my wedding 29 years ago! He looked pretty much exactly the same! I was excited to get to catch up with both of them, while we drove to Tyson’s Corner and went to The Capital Grille for dinner. We had a calamari appetizer, prosciutto-wrapped mozzarella, and I had a 10 ounce filet mignon, sliced with mushrooms and onions. It was absolutely melt-in-your-mouth tender and perfectly done. I still shudder when I think about how good dinner was… so many, many thanks to JK for setting up this fabulous reunion and for a fantastic evening with best friends. I also sipped some Cabernet Sauvignon, which was an amazing treat. I’m not on chemo yet, right?
On Sunday we woke up early and brought the trailer with us, and my brother-in-law J. and my son loaded it up with 2 dressers, the kitchen table (upside down), end tables, and then we went back to my parents’ house and loaded up the lower part of an old Hoosier cabinet I want to restore and refinish. This isn’t my Grandma O’s old Hoosier cabinet, which my parents restored and I totally covet that amazing piece, but this is one that hasn’t had its bare oak wood painted, it needs some re-gluing and TLC.
The loading of the trailer totally flattened the left trailer tire and we had to fill it to 40 psi with one of those 12V plug-in air compressors before going to my Dad’s house and using his pancake compressor to fill both tires to 60 psi. They were showing the starting signs of rot, so we checked the internet everywhere to locate a spare, just in case. We found one on the way home in Dale City, but it was mis-inventoried was was actually a 15″ trailer tire instead of a 12″ one.
We went to Sunday lunch at my parents’ favorite Greek restaurant, Spartan‘s, and my low-carb option was a gyro platter with Greek-style beans instead of fries or mashed potatoes, and a side Greek salad, add an entire side of Kalamata olives. Delicious!
We said our goodbyes and headed back home, anxious about the trailer tires popping on the way home, but we made it home in one piece, and in pretty good time.
For some reason I didn’t have the deep sense of dread that I always feel before chemotherapy day, but the next day, Monday June 5, was the scheduled chemo day. I realize suddenly, that the reason I didn’t have a sense of dread is that I was pretty sure I wouldn’t have chemo that day, as I was being recruited for a study of a new chemotherapy drug. But the fallback position was FOLFIRI+BEV (Irinotecan, 5-Fluouroracil, and Bevacizumab), which incidentally did absolutely nothing while my cancer spread to my liver and grew and grew until surgery, a hepatic arterial infusion pump, chemo with Floxuridine, and radiation finally beat it down.
My Failed Attempt to Become a Human Guinea Pig
On May 31, I got a call from my oncologist saying I may qualify for a Phase 1 clinical trial using AbbVie’s Anti-c-Met Antibody Drug Conjugate, ABBV-400. To translate: my tumors have a mutation that expresses high levels of c-Met (mesenchymal-epithelial transition factor), and this mutation is associated with overall poor prognosis (AKA death), because the cancer has a high resistance to chemotherapy drugs. The drug being developed, ABBV-400, is a refactoring of a moderately successful trial drug ABBV-399, being tested against solid lung cancer tumors, but this drug targets c-Met expression and uses it to deliver chemotherapy to cancer cells, while sparing cells that don’t express c-Met. Some of the immune and epithelial cells in your body express c-Met and will likely suffer side effects, but the ability to deliver poison directly to my cancer cells would be a huge boost. The study is in the fourth stage where it is being tested against colorectal cancer tumors, and earlier stages with dozens of participants show some promise. And they also mean that I wouldn’t be the first human after mice to receive the drug (nice).
Another nice thing about the study is that it would pay for all costs of treatment, and a bunch of extra scans and blood work to see the levels of the drug in my blood 24 hours after receiving it, extra labs, extra CT scans and PET scans. Even if the drug didn’t work, I would be the beneficiary of a lot of information gathering that could be useful. Though I would have to endure regular biopsies of my tumor so that it could be genetically tested and evaluated, and I know from the days of my painful abscess that poking holes in my abdomen while I am conscious is not my favorite thing at all.
I spent a day researching the company, its drugs, their approaches, and reading about the study. Being in the study isn’t without its risks, like I could turn into a giant squid and slide into Jordan Lake and terrorize boaters for decades before I am hunted down and killed. Though I might enjoy that. Or it could be a Firestarter sort of situation and I start being able to make nuclear explosions when I am angry. That might also be interesting.
Or more simply and sadly, if the study drug isn’t working after 12 weeks and we decide to discontinue it, my cancer may have grown so much that I have even less time left to live, which means even less time to find a chemotherapy drug that works against my stubborn tumors. Making the right choice is so important right now, it makes my tummy rumble to even think about it.
So everything seemed to be lined up, though in order to enroll in the study, my platelet level of 91 would have to be over 100. My platelet levels have been on a steady climb ever since they were zorched by radiation in March and fell from 123 to 86. I had my fingers crossed.
On Monday the 5th of June I started my day with my lab work. The port nurse accessed my port, got good blood return, flushed it with saline, then drew out a couple syringes of blood (thus lowering my platelet levels even further). She put on a gel dressing to last a few days in case I went home with the 5FU chemo, and the hypo-allergenic version of the Tegaderm dressing over my port needle.
I’m not sure why they call it a port, since it’s on my starboard side.
I was released from the lab to head up to my oncologist appointment, and before 15 minutes had passed, the CBC (Complete Blood Count) results were in, and my platelets had fallen to 87.
And just like that, no study drug for me. Sigh. At least it wasn’t a treatment decision I had to make.
So we went to Panera Bread Company in the hospital, which should be renamed to Panera Stuff-You-Can’t-Eat Company because there really isn’t much on the menu that doesn’t have loads of carbs. So I had some tomato soup for lunch, and a couple hard-boiled eggs, and I contemplated my fate.
But then one of my co-workers, T. showed up because his mother was in the hospital having surgery, and I hadn’t seen him much in the past few years since the COVID and so seeing him really cheered me up and took my thoughts off-track. Thanks, T!
I had my oncology appointment after that, where I signed the consent forms to proceed with the FOLFIRI+BEV chemotherapy, and we talked about how nice it was to be off chemo for so long — well, except for the part where the cancer went bat-shit Tetsuo Shima insane on my peritoneum. I had them check out the red bump on my forearm that I was convinced is skin cancer (spoiler alert: it was probably a chigger bite, and now after the chemo it’s gone so… we will never know).
Then, after leaving the oncologist’s office, I got my CEA (Carcinoembryonic Antigen) results. The value was 8.7, down 12% from the previous value of 9.9. With no chemotherapy and only a restricted sugar and carb diet, with ketone levels of about 1.6, my value went down!!! Looking at the upward trend, the expected value after 13 days should have been about 12.9, but this result was at least 23% lower than I expected it to be.
This gives me hope that, going into the chemotherapy, the restricted glucose diet is helping slow down the cancer. Now I’m excited to know what the combination of diet and chemotherapy will do to the CEA when it is tested in 3 more weeks!
Doing chemotherapy and oncology appointments on Monday was much less crowded than it has been on Tuesdays. We didn’t have too long a wait in the waiting area, and were taken back to a regular infusion room with a reclining chair. Since we’re not accessing the HAI pump this time, there is no need for a bed which improved the wait time as well.
I got weighed, and I was 201 lbs (I lost 5 pounds in the sugar embargo).
I got my pre-meds, 12mg of dexamethasone and 16mg of zofran, a half hour wait, then a tiny syringe of atropine before the irinotecan infusion. The irinotecan takes a couple hours to infuse, then they switch to the bevacizumab, which takes about a half hour to infuse. Then they brought in the 5-Fluouroracil in a chemo football. Yay! We’re back to the football! I like this infusion pump much better. It is mechanical and has a 5ml/hr rate limiter, whereas the take-home electronic infusion pump is adjustable (but we only get 5ml/hr anyway). The electronic infusion pump is very heavy and onerous to drag around everywhere, and to sleep with at night, and it makes tiny zweep zweep noises as it pumps the 5FU.
My tummy was unsettled though not nauseated, and there were some cramps happening in my abdomen as is usual for the irinotecan. I forgot to bring my imodium so I expected instant diarrhea as usual, but it didn’t arrive. I did go to the bathroom halfway through the infusion, and it was reasonably normal.
We were discharged and I felt kind of hungry and surprisingly not nauseated so we went out to grab a bite to eat at the Carolina Ale House. I had a steak with Caesar salad (hold the croutons), and roasted vegetables. I was surprised I had a fairly robust appetite.
That night I took a melatonin to get sleepy, and I sat in my recliner since my stomach was getting a little queasy and I didn’t want to keep my wife awake in case I started hurling vomit all over the bedroom. I fell asleep at about 11pm, but my oldest son woke me up asking if I was doing okay. Grr, I was trying to fall asleep. I groggily went up to bed and slept until about 5am.
Unlike every single other chemotherapy session I can remember, I woke up without nausea. I didn’t need any zofran. I took imodium in case I needed it, but nothing seemed to indicate that I would. The only thing that was unusual was that on Tuesday at lunchtime I had a fatigue crash. It could have been not getting a full night’s sleep the night before, but I thought I would lay down instead of eating lunch and I slept deeply for 75 minutes.
Over the next few days of the “bad week” I didn’t get any mouth sores, dizzy spells, nausea, or insomnia. In fact I never took my 8mg of dexamethasone to relieve side effects, because I didn’t have any. I didn’t have blood sugar spikes, in fact my sugars were in the low 80s for four or five days. I did have the usual painful and caustic burning poops when the irinotecan went through me, sometime on Wednesday.
I’m beginning to think there is something to this notion that keto, fasting, and carb restriction can help reduce chemotherapy side effects.
I had a miraculous week. I joined my lunch bunch friends on Wednesday. I felt great. I had a lot of energy at night… I went to my APA pool league on Thursday. I lost my 9-ball match to another 4 (who is a 5 in 8 ball so… a better shot than me), but I won my 8-ball match against D, who is a 6!!! I was over the moon at sneaking in a win against a 6!
And then, this past Saturday, I pre-played an 8-ball match against C.S., a 7. His pool game is amazing. I did a lot of racking the first 2 games, I barely got a shot or two in before he cleaned the table and sunk the 8-ball. The third game was thrilling, I got on the 8-ball first and shot it and missed! He sunk his last ball, then expertly put down the 8 ball and won that game. The fourth game I was very lucky he made one mistake and I managed to sink my balls and then the 8-ball! The fifth game I also won, so I won a match against a 7!!!!! I almost pooped myself I was so excited… and nervous. So I won 2 out of the 2 games I needed to win the match, and he won 3 out of the 5 he needed to win. Final score: 2 points to zero points!
So at the time of this writing, I have a week before the next chemo infusion and it’s been a very tolerable cycle, for the first time… ever, I think. Right now I’m feeling hopeful and quite healthy, which is a special blessing. Thanks for reading all the way to the end of this book, if you made it here! And I was so scared!
My love to all!