I woke up this morning with a sense of dread; after three months with no chemotherapy, I can’t say I miss it at all. In three months I’ve recovered some of the peripheral neuropathy in my hands: it’s still really bad in my fingertips, but I can feel my palms again, and I can feel things with my palms again. I know I look weird petting things like velour, silk, cats, hair, sawdust, garden soil, toothbrush bristles, but honestly not feeling numbness in your palms again is like waking up from a years-long slumber. Sensation is exhilarating, when you have it again.
Now I can tolerate a tiny amount of spicy food again — granted, I can only take the heat of peppers slightly hotter than black peppercorn, which is basically nothing, but to feel spiciness and not pain, is wonderful. I love spicy food. I miss Szechuan ma la cuisine that makes your nose run. I love hot buffalo wings! I used to eat pickled jalapenos like gummy bears. Now a mere sliver of dried Thai chili can slay me with hours of direct nerve pain. It has improved a tiny bit in three months but not nearly enough.
A bit of an overshare here, but being able to have a normal bowel movement that doesn’t hurt or bleed, one you don’t have to think about or dread beforehand, has been a godsend.
Things are complicated so I will quickly break down how chemotherapy works from now until mid-January:
(1) Chemo via Hepatic Infusion Pump: filled with 100x-power floxuridine chemo delivered directly to my liver via my hepatic artery. 2 weeks ago, the reservoir was filled with a half-dose of this chemo. This week, the reservoir will be filled with sterile saline and heparin which will infuse over 2 weeks. This will be 2 weeks on, and 2 weeks off.
(2) Systemic chemo to prevent additional metastases: Using the FOLFIRI regimen again, I will be given a 1.5-hour infusion of Irinotecan, followed by 46 hours of 5-Fluouroracil given 5ml per hour. This is repeated every 2 weeks.
So it is with a high level of anxiety and trepidation that I showed up at 12:45am for my lab appointment. I have a sort of wild fantasy that in three months I have built up a solid immunity to chemotherapy side effects, that I can blaze through 6 more rounds with ease. Let’s get this done!
I got a call a few days ago from a study doctor saying they were going to add a cholesterol panel and HgbA1c assay to my regular lab work this time, so I should fast after midnight the day before. So I stopped food before midnight, but since the lab appointment was 12 hours and 45 minutes after that, I arrived at the lab absolutely starving, with my stomach roiling with unchecked bile and acid, just ravenously awaiting the introduction of food.
The lab nurse accessed my port by disinfecting the area, then inserting the Huber needle through the skin of my upper chest into the septum of the port. It is a virtually painless procedure, a mere millisecond of a pinprick. The nurse draws blood out from the port to test the blood return and make sure the port catheter is clear, and mine is doing great. Then they draw 3 syringes of blood for my various blood tests, and connect those syringes to the vacuum tubes which sucks out the proper amount of blood for each test.
The nurse didn’t have any orders for the cholesterol test or HgbA1C test, which was weird but we thought maybe they would collect that in the clinic visit. After flushing the port with saline and capping it off, I was sent up to my oncologist appointment.
In the oncologist visit I learned I’ve gained back 5 of the 20 pounds I lost after surgery! Nice!
Also my liver enzymes went up, showing the HAI chemo was stressing my liver, so they wrote a prescription for Actigall 300mg 2x/day to give the liver more protection. This is primarily a drug to protect your gallbladder from getting gallstones, but I don’t have a gallbladder so perhaps they could bring the medication to the pathologist’s freezer where my perfectly healthy gallbladder is probably being stored for posterity. Apparently there is some off-label use of Actigall to battle liver cancers and protect the liver, so now we’ve got that in the mix.
They checked my abdomen and incisions, which are feeling good and healing nicely. Most of the incisions are sealed and healed, and three still have to shed their Dermabond cocoons. They checked my lungs and heart, and were satisfied we can go on with the FOLFIRI chemo today. Yay?
So our next stop was to get me a grilled cheese and avocado sandwich since I was starving, and I ate it out on the balcony outside the infusion clinic waiting room. Having food in my stomach again felt wonderful.
On the way back into the waiting room we ran into a snack cart attended by a retired gentleman who gave us drinks and snacks, and no small amount of encouragement. He survived colon cancer that metastasized to his lungs, went through years of treatment and surgeries, and is now a decade past that. He volunteers for the cancer center to give cheer and hope to other cancer patients. I was touched by the hopefulness of his story and his can-do attitude. It was a huge boost at what was definitely a low moment in my day, those precious last minutes of feeling healthy before a round of chemotherapy.
We were called back and put in an infusion room. Now instead of receiving infusions in a recliner, I am a patient that gets mine in a hospital bed because the nurse needs me to lie down flat to empty and fill my HAI pump. I was pretty tired so I looked forward to lying flat, but I was never able to sleep because I was anxious.
Nurse O was amazing, I’ve had her before and she is the best at answering questions and printing out information sheets related to the questions I ask. She is also incredibly confident and competent. She confirmed for me that I had been getting dexamethasone with my floxuridine in the HAI pump, which totally explained why I hadn’t been able to fall asleep without melatonin for most of the days of the last 2 weeks. I was exhausted but not sleepy for a long time.
Nurse O hooked up an IV pump with a bag of fluids to my port line, then brought out the kit to access my HAI pump. The kit has a needle that is maybe 2 inches long, attached to a line with an empty 50ml syringe screwed on to the end. She disinfected the skin around the HAI pump and, giving me a courteous warning when she was going to place the needle, she expertly placed it precisely in the reservoir. It was practically painless this time, just an instant of needle-stick like the port access, and she didn’t have to move the needle around to get the right spot in the reservoir.
It is weird to watch, but once the HAI pump reservoir is accessed, the contents of the reservoir (leftover floxuridine+dexamethasone) come out under pressure and they fill the syringe without having to draw the plunger. Such is the magic of the HAI pump’s body heat-driven pressure system. When the reservoir was empty, the nurse flushed it with sterile saline by pushing it into the reservoir. She stopped every 10ml or so to let it return to the syringe, then let all the saline return to the syringe. Then she pushed a combination of sterile saline and heparin, removed the access needle and the HAI pump work was finished. She made all this look easy compared to the first time it was accessed. I was impressed.
Next they pushed the irinotecan over 1.5 hours, after first putting atropine into my port to help lessen the immediate GI symptoms you get. I was also given 8mg dexamethasone and 8mg zofran by mouth. And the side effects were pretty immediate, after about 15 minutes of infusion I felt my intestines noisily gurgle in complaint. I regretted eating lunch as I felt some nausea, but the zofran seemed to be holding it back. I ended up going to the toilet after an hour and having some epic loose stools all of a sudden. I returned to the infusion room, dragging my IV pole along with me, and before long it was time to unplug the irinotecan.
I used to get a little 5-FU football to take home, that would infuse the drug 5ml per hour over 46 hours, but now the cancer center is switching over to an electronic pump that you wear on a fanny pack, that delivers the same dose over the same time period. Nurse O connected the new pump and gave us a new biohazard disposal container, a sheaf of new information booklets about home infusion and hospice (!), and talked us through the chemotherapy spill protocol.
I’ve always paid only half an ear to the chemotherapy spill talk. I’m supposed to take a spill kit everywhere I go with me when I leave the house. I guess if my 5FU bag got punctured and leaked all over the floor and the cats, we would have to break out the spill kit and put on the booties, safety goggles, paper hat, two sets of gloves, gown, and march around the house like the government scientists in E.T., putting down special chemotherapy-absorbent towels, cleaning everything, then putting all the waste and the cat corpses into a big yellow biohazard bag. Then we would have to call the cancer center nurse line, and probably fire trucks, ambulances, HAZMAT trucks and nuclear, biological, and chemical teams would show up in our neighborhood and spray all the dog-walkers with special anti-chemotherapy disinfectant spray. I imagine all the dogs and people would lose their hair, the trees would lose all their leaves, and then maybe they would rake up my yard and take all the leaves to a superfund dump or something. Pretty scary.
Nothing like that could ever possibly happen though, we’ve been through 17 chemotherapy rounds now without incident. Besides, I’ve got this junk coursing through my veins and I’m not growing a third eye or anything. I’m not growing much of anything, to tell the truth (especially hair). I imagine that if I don’t cover my sneeze, my cyto-toxic nostril-droplets would settle on the walls and floor and burn through them like the xenomorph acid-for-blood in Alien. I consider myself like some kind of magic chemotherapy factory anyway, my liver breaks down the chemo into its constituent atoms and I pee it out in my toilet, which I have to flush twice. They prefer you have your own bathroom and toilet, but since I have one and a half baths in my house and five humans live here, I have some chlorhexidine wipes I can use to wipe the bathroom after I use it. I can also use them to clean up if I happen to drool too much when dinner is served, so the kitchen table is chemo-free. I have other bodily fluids too, but let’s keep this safe-for-work today.
So imagine my surprise when, the next day it seemed like my shirt was wet. I figured I dripped water on it when I was drinking, but I looked under my shirt and my abdomen was covered with a white powdery substance that was barely dripping out of the taped-up connection between the pump and my port line. I guessed it was like battery acid. I had to get it off before bad bad bad things started to happen. I yelled for my wife and we broke out the spill kit and got her suited up. I stripped down and put my affected clothes in a pillowcase as directed, so they could be cleaned separate from all the other clothes. (And don’t you know, a day or two later our washer stopped working, that is how powerful the bad mojo from this chemotherapy is). This is serious bad shit happening right here.
I was beside myself, I called the nurse line and while I was on hold for a half hour, we tried to figure out how to clean me up before I dissolved into a red pulpy mess. We used soapy paper towels, and discarded them in the yellow biohazard bag. I contemplated taking one of those scrubby showers like from Silkwood, except that I was told not to shower with my port accessed… what a conundrum!
The nurse finally came on the line and was entirely too calm about our predicament. The nurse said to stop the pump, clip the port line closed, then take all the tape off the connection, unscrew and reseat it tightly, and restart the pump and see if the leak happened again, and if it didn’t to wrap gauze around the connections and tape it in place.
NO calls for ambulances. NO helicopters. NO fire trucks. NO five alarm fire-level panic. He even told me I could do it with my bare hands if I was sure to wash them afterwards. I looked at my wife, decked out in her spill regalia.
Are you serious?!
Think about it for a second. Let’s say a little of my spittle dripped on the cat. This didn’t actually ever happen, mind you, and no animals were harmed in the filming of this little scenario. But the spittle on the cat would, assuming it were made of full-dose chemotherapy drug, kill any affected cells that happened to be dividing at that moment, and most of the skin cells wouldn’t be. Hair follicles yes, but most cells at that precise moment in time would be unaffected. And then as the drug diluted and fell away, at worst wouldn’t there be a few dead cells involved? To quote the revised entry for The Earth in The Hitchhiker’s Guide to the Galaxy, isn’t this stuff mostly harmless? I mean, 17 rounds of chemo should tell you the same thing. So after a little overreaction, I imagine the English word spill would properly refer to the release of a substantial portion of the drug rather than drips and drops.
So that was an adventure. The 5FU infusion continued without incident until take-down on Thursday at 5pm.
And that’s when the fun begins. It’s been three months since I’ve had chemo, so I sort of forgot all the side-effects. Tuesday night I couldn’t get to sleep, and took 5mg of melatonin and tried to sleep for more than 2 hours before the melatonin won out. I had days of stomach cramps, not especially painful but disturbing little spasms. My blood sugars went crazy, normally never higher than 150 and they peaked to 300 on the dexamethasone. Three months of progress reversing the peripheral neuropathy in my hands was un-done in one evening. The peripheral neuropathy and numbness in my feet is also worse. My surgical incisions are also bothering me again with little twinges of pain where they were completely fine before. I wonder if the healing cells in my wounds are now being killed off by the chemo drugs.
I forgot how dog-tired I get on the following Friday, when the steroid wears off. On Friday I think I slept most of the day. Part of that sleep was avoiding misery, since at the outset my poops were burning like I had followed a steady diet where habanero peppers were at the base of the food pyramid instead of grains and bread. On Wednesday and Thursday I had to take zofran for nausea a couple of times, which has let’s say a solidifying effect to your toilet output, which thankfully sort of counters the effect of the I-run-to-the-can chemotherapy drug.
Coupled with the skin irritation from the habaneros, Saturday morning I had a life-changing poopy experience that was a 9 out of 10 on the pain scale. It was easily the most pain I had ever endured in my life, like giving birth to magma. It was worse than my post-surgical abscess last year. It was worse than the installation of a drainage tube for that same surgical abscess. It was also worse than the excruciating multiple daily flushes of that line. It was worse than waking up from surgery with the epidural having fallen out. All of those experiences make me shudder.
It was terrible and frightening. The experience activated my adrenaline, and gave me the shakes and chills, and I felt the clammy fist of shock in my chest. I felt dizzy. My heart rate was 130 bpm. My monkey-brain was convinced that I was going to die, and then afterwards the pain receded to maybe a 6 and I cleaned up and had a sitz bath to recover.
I was shook. As I lay down in bed trying to huff out the remaining pain I realized I was suddenly overcome with fear at the idea of doing this 6 times a day for 3 months. I realized with a cold feeling in my stomach that if this is the future I simply can’t survive it.
Obviously I need to discuss all this with the oncologist at our next visit November 1, and I pray that it gets better (Sunday was not much better), or that we alter the plan in a way that doesn’t risk more metastasis.
Thankfully, on Saturday afternoon my sister drove my parents down to my house for a visit and it really refreshed my flagging spirit. We went out with the kids for lunch, and then for dinner while the kids had their own social plans, the grown-ups went out for a nice dinner together. My mom was super happy to see us all, she had been so worried during the surgery and recovery, and just had to see me with her own eyes to know I was okay. Somehow when you’re surrounded by the love of your family, you know deep inside that everything will be okay even if you had doubts.
Sometimes all you can do is clothe yourself in love and prayers, and hope that every wave of pain will wash over you and in the end, you will remain.