I’m not sure if I’ve ever felt so good going into a chemotherapy day. After a lovely 4-day weekend, plus travel that broadens the mind, happy digestion, and almost-normal elimination (the polite word for it), I woke up at 6:30am and had until 7:45am to shower, assemble my chemo bag, and get to my lab appointment.
What do I keep in my chemo bag? It doubles as a go bag for ambulance rides to the emergency department, when things occasionally take a turn for the worse so it has some items that will help me in the long-term.
First, I have two sets of headphones: some Raycon earbuds for using in the waiting areas so I don’t look quite so dorky, and my JBL noise-cancelling headphones for when I’m in the infusion room listening to my constantly-evolving Chemotherapy Playlist. I have my tablet so I can write, browse the web, or play puzzle games like sudoku. On long stays I bring my Dell laptop and its power adapter, but the adapter is made of tungsten I think, and it actually weighs about 16 pounds where the laptop is only like a pound and a half. I keep a graphene USB charger which is awfully heavy and I don’t often need it because there are usually plugs nearby except in waiting rooms, but on long hospital stays it comes in handy. I have ginger candies for nausea, and I used to have Dove dark chocolate squares except that in the summer they all melted so I never replaced them. I have my Kuru Toga mechanical pencil and a notebook, should the tablet fail or maybe in case I was inspired to draw, though the word draw here means to make stick figures on paper that even a preschooler would look down their nose at. I have my IV pump for the 46-hour 5-fluouroracil infusion. I have a powerful little UV penlight so I can check the cleanliness of things, since I might be a little bit germophobic and I don’t like filth. I have a micro-fiber cloth for cleaning things but usually I end up blowing my nose with it. I realize I never really owned a proper handkerchief. I have a MagicEraser too, for cleaning tough filth. I carry extra Zofran for nausea, imodium for diarrhea, and colace for when you want diarrhea, haha. I have a little box with magnetic pressure point bracelets for nausea, but haven’t really used them yet. I think like flying in Peter Pan, you have to know that it will work ahead of time. I have a pair of reading glasses. For some reason I have a jeweler’s screwdriver set, I don’t really go anywhere without it. I have a toothbrush, toothpaste, and flossers. I have a tube of Nuun tablets in case water gets too boring, or in case throwing up causes me to need electrolytes in a hurry. I have a couple of USB flash drives, including a Windows 10 install drive for some reason. It is best to be prepared: I figure maybe an MRI goes south and I need to reinstall the OS to get it running. Though I can tell you, I would never get into an MRI that ran Windows. I have a sleep mask that comes in handy at times. I have a sort of floppy frisbee sort of thing in a small round case that can be used as a fan when it is popped open. I have a digital voice recorder in case I think of something poignant to say. I have a nail kit and cuticle pusher. I have an HDMI cable and an ethernet cable, because you never know when you’ll need them. I have some gauze, band-aids, and alcohol lens-cleaners. That’s about all I can recall or bore you with at the moment. But the point of this is that the chemo bag weighs an actual shit-ton and by the end of chemo day, it feels like I’m dragging Stonehenge home with me.
But I digress. We got to the cancer center at 7:48 due to difficulties getting my companion to come out to the car. I checked in for my 7:45 lab appointment and was given a pager. There was a very, very, very long wait that ate into my oncologist appointment at 8:45am. I think it was 9:00am by the time the pager went off, despite me sitting for 72 minutes under an electronic sign saying the wait time for a port nurse was 0 minutes. When the pager went off, I went into the lab, someone took my pager, and about six different people asked my name and looked confused when I told it to them. Finally someone looked me up on the computer and realized I needed to be in the basement radiation clinic, where some overflow nurses were helping access ports. Someone walked me down there, where I was met by nurse J. who took me into a relatively swanky examination room and accessed my port. We had a nice discussion about my Freestyle Libre glucose monitor, and then about the nurse’s husband who was diagnosed with diabetes and wasn’t taking it seriously enough. You actually learn so much about managing diabetes with the Freestyle Libre, because you can see that not just the types of food you eat, but the portion sizes, have a huge effect on your blood glucose.
After taking several vials of blood for my CEA, CBC, and CMP tests, I was let go to visit my oncologist’s PA. This wait time was short and tolerable, and I was weighed at 201.2 lbs, had a nice low blood pressure, and was taken to an examination room. The PA came in and we discussed the last chemo cycle. I talked about noticeable side effects this time. I had like a week-long painful mouth sore started by my inadvertently biting my cheek, that almost entirely healed in the last couple days of the cycle. On the bad weeks, it seems like no wounds ever heal or improve until the last 4 of 5 days of the cycle, then they heal up just in time for the next round. I complimented the PA on her imodium regimen, because it saved me like 95% of the pain and frustration of going to the bathroom. I had a couple concerns, for one I feel like I have puffiness in my armpit and she did an exam of the lymph nodes there and was satisfied there was nothing to worry about. Second, one of my surgical incisions is still packed with a hard dermabond scab, where nearly all the rest have fallen off and are now good, sealed, healing skin. She checked the stitches on my HAI pump incision and removed them. Then we talked about my lab work.
My liver numbers have gone back to a healthy range in the 2 weeks I had off from the HAI flloxuridine chemo… always a good thing. My CEA levels are down to 13.1, where they were 19.2 on 11/1 and 70.6 on 7/19. This is encouraging because lowering CEA levels may mean the tumor is responding well to the chemotherapy regimen. My red blood cell count and hemoglobin have improved a little, still under the normal range but tolerable.
Then I was sent up to the infusion clinic appointment, which by now I was about an hour late for. As soon as the hospital’s Panera Bread shop started serving lunch at 10:30, my wife brought me tomato soup and we went out on the balcony to enjoy it. It was a beautifully sunny day, and even though it was a tiny bit chilly outside, the warming sun overcame it perfectly.
Unfortunately we enjoyed the balcony for about two hours before we were given an infusion room. It’s more complicated and time-consuming for me than it was before the last surgery, because now I need an infusion room with a bed so that they can raise me up, flatten me out, and stick a big needle in my HAI pump. I like having the bed because I can nap very comfortably and listen to music.
We were led to the infusion room, where nurse H. gave me the pre-meds of 12mg dexamethasone and 8mg Zofran, plus an IV dose of atropine which makes me feel sort of light-headed and makes the lights too bright, and after all is done, I have to walk home all gangly like a baby giraffe. But the atropine is amazing at reducing the spasm/cramps that occur about half way through the irinotecan.
After a half hour of waiting for the pre-meds to take effect, the nurse started the irinotecan. After about an hour of infusion I started getting hit with wave after wave of nausea. It was the worst I’ve had up until now, but I didn’t throw up. I was so tuned into breathing and trying to mentally overcome it that I forgot my ginger candies and magnetic bracelets. My wife pressed on my pressure points which seemed to help.
Then the nurse came in to access the HAI pump reservoir using a kit with a big needle. A second nurse came in also to learn how to do this procedure. After a good scrubbing with chlorhexidine, nurse H. demonstrated how to stick an enormous needle into my belly in just the right spot. She sort of complimented me on not having a lot of fat over the HAI pump, which makes it super easy to find the lumen and stick a needle in it. The procedure isn’t terribly painful, definitely less bad than an IV insertion but a little more noticeable than a port access needle because when pressing into the HAI pump, the whole pump is pushing down into my abdomen which is a bit uncomfortable.
Once accessed, the attached syringe spontaneously fills up with the saline that was in the pump, and the line gets clamped off, the liquid amount is measured to determine flow rate, and then the syringe is discarded. Then comes a sterile saline flush, where more than 5ml of saline is injected in, then allowed to be pushed back out by the action of the pump. Then comes the enormous 50ml syringe of floxuridine, which has to be injected 5ml at a time, 1ml allowed to flow back out, then 6 ml, then 1 ml allowed to flow back out, and this is continued until all the floxuridine is injected. The needle is painlessly removed and the HAI pump is ready to go.
Next when the irinotecan was done, nurse H. noticed my nausea and discomfort and offered compazine, but I felt like I had a tolerable amount of nausea and opted to put up with it. So the nurse took my electronic IV infuser, changed its batteries and hooked up the 5-fluororacil to my port line. After starting the pump and observing it for a short time, we were let go.
It was about 4:30pm by now… a very long day at the chemo clinic. Normally if you arrive at 7:45 you can count on being out by 1pm but this was a longer day than usual.
Sleeping was tough. I went to bed early, like around 7pm, and took 5mg of melatonin which usually helps. I had about 30 minutes of sleep before I had to wake and take my evening medicines. Then it took me more than an hour to fall asleep again, I slept for another hour and woke up to roll over and couldn’t get back to sleep. I came downstairs and finished my Thanksgiving blog entry, which made me feel tired again so I went to bed and eventually fell asleep, until about 3am when my IV pump set off a loud alarm claiming something about being unattended. I wondered briefly if it was looking for nearby brainwaves but wasn’t finding any? I got the thing working again, took that Zofran for the nausea that was getting intense, and went to the kitchen for some Kefir, which seemed to help the nausea, though it could have just been the Zofran. I came back to bed and stared at the ceiling for a long time before my eyes got heavy and I slept again, this time until 6am, and my body told me this was the end of the line. Please exit the sleep train at this time.
I’ve had a lot more nausea on this 2nd double-whammy chemo than any time before. I’ve had my emesis bag handy at all times, and sometimes I’m just curled up breathing through it. I tried a ginger candy at about 10am and it seemed to help.
Wednesday I went into the office. The steroids and imodium had me feeling pretty normal, and I like working in the office a lot better than working from home. It’s a beautiful environment, you can walk around a gorgeous campus to take a break, and there is a cafeteria on the ground floor so you don’t have to make your own lunch.
Only on this Wednesday I had lunch with my lunch bunch as I call them, friends that have been meeting nearly every week for more than 12 years. I was quite hungry and had a bowl of lentil soup and kofta kebabs. Lentil soup is sort of a magic elixir when my stomach is upset, I didn’t have any kind of nausea again until about 5:30pm. I came home and had some dinner and once my stomach had something to do, I felt better. No more Zofran as of yet!
I woke up early on Thursday morning, sort of excited that it’s chemo takedown day where I get disconnected from the IV pump and get my port flushed and de-accessed at about 1:40pm. I’m not sure why this is such a difficult thing to arrange, but it is what it is. In the used-to-be times, the cancer center would notify a home nursing service to come and do the chemo take-down. I love the nursing service because most of the nurses they send have had cancer and chemo before, and they give great advice and encouragement. They generally contact me the day before via text message or call to my cell phone, and firm up the time. If they don’t, I usually contact them and find out there’s some snafu like the Cancer Center scheduled them on the wrong day or not at all, but we get it worked out. Last night I contacted the nursing service, who had no idea I needed a takedown and scheduled to send me nurse John… this guy is the best, very professional, asks lots of questions to make sure you’re tolerating the chemo okay, and gives great advice. It’s almost like a visit to the oncologist. But then I got home and my wife told me the Cancer Center’s home health team called and set up a take-down at 1:40pm with nurse J. so I had to contact the other folks and cancel John, since if both get sent the nursing group might not get paid. It would be helpful for me to know ahead of time which takedown provider will be used, for times like the last round where nobody showed up at all.
So it’s Thursday December 1st! I never could get the hang of Thursdays. But this one was good so far, I woke up with no nausea and actually ravenously hungry, so feeling the energy of the steroids, I put a steak on the cast iron to feed myself and the 3 kids. It was about 24 ounces so I supplemented with some Smithfield breakfast sausage, which I thought I shouldn’t eat because of nitrites, but this brand of breakfast sausage has none!!!! Then I thought what the hell, let’s go for the Full Monty. And no, despite the amazing favorite movie of the same title, I did not cook in the nude while dancing to Abba. I mean that we had the General Montgomery English Breakfast! Steak, sausage, mash with gravy, tomatoes, beans, and mushrooms. I skipped the toast and eggs, this is a big breakfast as is and on the steroids I have to be more careful with carbs or my blood sugars skyrocket. I made plates for the kids too, who were wondering if it was Christmas already.
On Thursday afternoon at precisely 1:40pm, the Cancer Center home care nurse arrived and performed the chemo takedown. The timing was so good that a few minutes after he arrived, my IV unit started beeping to notify us that the infusion was done. It’s always an amazing feeling to be off the infusion. Even better is being able to take a shower after waiting about an hour for the port needle stick to close up. Clean and tidy, I went into the office and worked there for the afternoon. The office is so quiet and peaceful, it is much better to work there. Also my secret lab/home office is chilly these days so I prefer the warmth of the office.
A little note on how I was feeling: amazing! On Thursday I felt better than I had in years, maybe it was due to the dexamethasone steroids, but I felt unusually good on Wednesday, Thursday, and Friday. On Friday, I attended an office luncheon where I got to see about 50 people from my division and many I had not seen in years! I had filet mignon and roasted vegetables, and the food was incredible. I also had an unusually good appetite for bad-chemo-week. Normally I lose 4-5 pounds not eating in the bad week, then gain them back again in the good week. Though I weighed 200.2 lbs on Friday, meaning I lost about 2 lbs, this seems to be an improvement.
After the banquet I went to Baker’s Dozen doughnuts and got a dozen fancy donuts for the family. I had one of the doughnuts and it didn’t even freak out my blood sugar since I’d had steak and vegetables for lunch and eggs/protein for breakfast. My wife and I went out for Indian food for dinner Friday at one of our favorite restaurants, and she tried several foods and let me know which ones were too spicy, and I avoided them. I so love spicy food, but the FOLFIRI chemotherapy seems to damage my GI tract badly enough that almost any spice causes food to go right through me in a pretty dramatic way. That improves somewhat in the good week, and I can actually have mild salsa and chips. Almost any cayenne pepper or dried red pepper is torture though, to my mouth and digestion.
I started feeling the steroid crash on my drive home on Friday, I was almost falling asleep at the wheel. So after our Indian dinner I crawled into bed and slept like a rock until Saturday morning, maybe 10 hours straight. Saturday we went grocery shopping, and then had lunch at the Armadillo Grill in Carrboro. I went to a birthday party gathering that afternoon and stayed late to help clean up. I was feeling pretty good and stayed up a bit late in the recliner fooling around on the computer attached to my 4K TV, kind of a luxurious way to browse Facebook, catch a bit of Rimworld, and update the blog.
About 5am I woke up with a sore throat, so I went downstairs and refilled my water, had about 8 ounces, and blew my nose. My wife says it’s been more runny this week than normal, she noted it to the oncologist on Tuesday. By my memory it’s been quite runny ever since restarting chemotherapy, tinged with a little pink blood when I blow my nose. My temperature was 97.7, blood pressure 125/73, 82 pulse, 96% SpO2. I kept worrying about the sore throat and decided to burn one of the COVID tests we have lying around. We’ve used a bunch on everyone else, and I haven’t taken one yet. So I set it up, stuck a swab in my nose, and dripped 3 drops onto the test strip… within minutes I got a POSITIVE result. That’s not very positive, but… yikes. I have COVID.
On Sunday I called Cancer Center’s nurse line and it informed me that they were closed until Monday at 8:00am. My wife got the idea of calling the hospital’s main number and got the operator to page the doctor on call for my Oncologist’s office. I got a callback from Doctor J., who asked about my symptoms, temperature, O2 sats, and blood pressure. She told me if my temperature exceeded 100.4 during the night or my O2 sats went below 92% or 90%, to go to the urgent care or emergency department. She gave me the phone number for the hospital’s special COVID clinic, and told me to call them at 8am Monday morning.
I had simply the most awful night’s rest I think I’ve ever had. The night went like this: I fell asleep quite easily, then had stress anxiety dreams about hospital billings and insurance, or about mysterious columns of numbers that needed to be checked and double-checked or the sky might fall, or any number of ridiculous situations with terrible consequences. Then I would wake up after seemingly hours of this nightmare, only to find the clock had only advanced by a minute or two. I must have had 500 of these dreams back-to-back and when the sun came up, I was exhausted. This led to me falling asleep all day long, in the middle of phone conversations, while logging into the Walgreens website or the hospital MyChart application — I would wake up and find I was automatically logged out due to inactivity (sleeping).
I also have had a constant headache, body aches, low grade fevers at night, and progressively worsening dry cough. So on Monday at about 8am I called the COVID clinic, only to find out that it now provides vaccinations and tests, but no longer does monoclonal antibodies or infusions. There is a specialist that I can get my oncologist to refer me to, that can work with my team to craft a care plan. So I contacted my oncology team to inform them of my COVID diagnosis. They told me there was this great COVID clinic I could call, so I told them what was going on with the COVID clinic and how I needed a referral to their COVID expert, and the oncology team got right on it.
An hour or so later I got a phone call from Doctor G., the specialist, and could tell immediately from her questions that she not only had read my entire chart (which at this point probably looks like a Michener novel), but she knew all my prescriptions and had done a good deal of preparation. She talked to me for nearly an hour about all the options, which ones still were effective, which ones were FDA approved or nearly-FDA-approved, the side effects of each, and interactions with my chemo and expansive list of prescriptions.
She recommended Molnupiravir because Paxlovid shouldn’t be used with my blood thinner Eliquist (which I am taking to dissolve a pulmonary embolism). She sent the prescription to a nearby Walgreens pharmacy since they seemed to have it in stock. I started taking it on Monday evening, and I don’t know whether it was immediately effective or if I am starting to get better, but I slept much better on Monday night. Except that I had a really vivid nightmare that all the dishes in my sink were overflowing and dropping soda cans, cat food cans, and plates onto the floor, so may have dreamed that I filled the dishwasher at about 2am. On Tuesday my wife asked me if I did the dishes in the middle of the night, so I guess it actually happened. I’m honestly surprised I stayed awake long enough to finish something.
Tuesday wasn’t much better than Monday, I still fall asleep in the middle of things, but I have a bit more attention span. I feel like I have less runny nose, but my coughing is getting worse, but O2 sats are still better than 93% so I am optimistic. I am actually able to update this blog because my wife gave me a wonderful head massage which canceled the headache almost immediately, and I feel actually able to think clearly again. I hate headaches!!!
Tuesday night, the headache was making me cross and simply ruining my life, it is the worst symptom. My wife risked her health to give me a forehead/orbits massage that lifted the headache like a blanket, folded it up, and threw it in a corner. I was in bliss just having a respite from the headache, it was marvelous. My brain was finally working again!!! I was able to make some social media and blog updates. A couple hours later I could feel it on the edge of returning but I went to sleep and it never came back.
I also had solid food for dinner instead of days of soup, and I savored being able to chew something, except that I have some bad chemo mouth sores that make anything acidic very painful to eat. I weighed myself at 195 lbs, so I’m about 10 pounds less than I should be, I fear getting that anorexia mark put on my record again at the next chemo session.
Wednesday morning I woke up feeling much better. My O2 sats were 97+ instead of 94+, I am coughing less, and the muscle aches left me sometime in the night. The antivirals were totally doing their job, though at the expense of some tummy aches and wet poops, but that’s what imodium is for. Since my brain is back in play I worked at home from my bed using my laptop. Having one screen only is a pain, but I manage OK. I’m hoping we’re out of the woods on this COVID thing. I am super thankful for the vaccines, without which your chances of going into a hospital increase by more than 10.5x. I’m sure my immune system is pretty wrecked after all the chemotherapy, but I am thankful that it’s still putting up a good fight.
On Thursday, my oldest and middle children both came down with symptoms and tested positive for COVID despite my masking when outside of the bedroom. I can only assume that the new strains are much, much more airborne and are circulating through our HVAC system. I tried to keep the bathroom clean with chorhexidine wipes but this probably didn’t work either.
On Friday, the children were already starting to feel better and by the next day, there was very little trace of the virus. Both of them had been boosted in the last few weeks, so clearly that protection gave them miraculous immunity to the virus.
On Saturday I was feeling exceptionally good, no fatigue at all, and I wanted to take advantage of the remaining days of my “good week” so I embarked on a project to install my retractable electrical cord reel in my workshop. I had purchased it before the cancer and never felt good enough to take it on, since it involved moving the band saw out of the way, drilling through studs, mounting a heavy object above my head with lag bolts, and all of this was just… well, over my head for a long time. Technically with the HAI pump I should avoid lifting really heavy objects so that my core muscles don’t displace anything important, so I made sure everything was a reasonable lift.
Once installed, I took my electric blower out in the yard and blew leaves, then vacuumed them up to the limit of the retractable cord’s reach. It was quite a chore, there were so many leaves!!! So after that I had to have a nap, I was quite drained. Once I was more rested, I went with my wife for a nice little hike on the Eno river. I call it a hike, but it was really more like two moaning invalids crawling up and down stairs trying to recall their youth when they were perfectly ambulatory. People were staring at us and everything. Cancer patient and lady with bad knees decide to go bouldering in the woods without supervision. That will end well!
On Sunday I took on another project, this one to install a retractable air compressor hose in my garage so I’m not always tripping over air hoses and spending hours coiling them back up. The hose reel is very heavy, so I made a template from its mounting holes and realized it can’t just be put on a stud, so I framed a box between two wall studs like you would a window, with two additional studs taking the weight, and I can mount the thing onto horizontal studs with a big dado for extra support, all secured with lag bolts. I think I could hang one of the Smart cars on this frame. I didn’t finish the project this weekend though, the air hose reel is way too heavy for me to lift, so I’m going to get some of my three strong kids to do the heavy lifting later on, while I mount the thing. I would say next weekend but that’s the bad week from chemo #21, and therefore not compatible with accomplishing much of anything. We might get lucky and see it finished in 2023!
On Monday morning I tested negative for COVID! I messaged my oncology team about whether we should proceed or reschedule, and they said I am far enough out that it’s okay to come. But Jen can’t come with me, with active COVID, my youngest son who isn’t infected will be at school all day, my older children are infected with COVID, and I just learned that my backup plan, lunch bunch friend L. also has COVID. I’m thinking maybe one of my other lunch bunch buddies, though I might be taxing them too much asking for a whole day hospital hangout. The oncology team said it would be okay for me to come alone this time. But the downside is, when I am in the office feeling great I barely can remember what all my issues were in the last cycle. I’ll just reference my blog, which is sort of my external data backup lately.
This brings us up to the edge of Chemotherapy #21, so follow along on the next post!