Everyone has COVID. Well, not everyone, 80% of my household has it. My youngest child seems to have completely dodged the bullet, but he had it several months ago so I presume he is temporarily immune. But he is at school all day and can’t bring me to my chemotherapy appointment. My wife and two older kids have COVID, the more actively suffering type that I would never inflict on a cancer clinic. My friends have COVID. My friends’ friends have COVID, except for the ones who had it a couple weeks earlier.
I really tried not to spread the plague in my own household. I tried to stay in my bedroom, and whenever I went downstairs to sit in my recliner I wore a mask. When I used the bathroom I used special medical wipes to wipe down the toilet, flush handle, and sink. Everyone caught it anyway. I feel bad.
There was a lovely bright side though, I got two presents in the mail. Both showed an attentiveness to my last chemotherapy blog post where I talked about my chemotherapy bag. I said I never had a handkerchief, and my old friend M. gifted me 3 beautiful cotton handkerchiefs with an ‘O’ embroidered on them. So classy, like my friend. I now carry one in my chemo bag and another in my vest on my person. With the COVID infection, they have already come in super handy.
I also got an anonymous gift of a bag of Dove Dark Chocolates. I love these so much and the ones I put in my chemo bag all melted in the summer. I’ve learned my lesson and now I only bring a few with me at a time, and I make an extra effort to eat them while I get infused so my supply is fresh. Thanks so much to my benefactors for the attentiveness and the thoughtfulness of these gifts! Snif! I feel seen.
So, the day before chemotherapy I took a COVID test and it was negative!!! I was so happy! My oncology team said on chemotherapy Tuesday I will have been 10 days into it, and after the antivirals I shouldn’t be contagious. So we don’t have to cancel everything scheduled for today.
Yay! (I think?). I was as happy as I suppose you could ever be about going to a chemotherapy session.
So I showed up on time for my lab appointment, to get my port accessed and blood drawn. The receptionist asked me, “have you been exposed to COVID or had a COVID test in the last 10 days?”
“Yes, I tested negative yesterday but positive Saturday, and the Wednesday before that.”
The nurse looked at me sternly and said, “you need to go. Leave. Get out.”
I was immediately on the defensive. Here I was in my N95 mask, which was clearly good enough to keep my family from getting… infected… Yikes. Point taken I guess. I explained that my oncologist asked me to come today, and I have a CT scan. She should call their clinic and ask.
The receptionist walked off to consult with others for at least 5 minutes, returned to confirm that I had a negative test yesterday, was gone a few more minutes, and then returned to say I could get my port accessed and lab work done. I was given a pager, and I slunk off into an empty corner, far from any of the other cancer patients. The pager went off pretty quickly and I went to see the port nurse. I’ve had this nurse a half dozen times, and we always have a good conversation. Thankfully, she always gets the needle into the port fast, with no more pain than you would get from an insect bite. I told her about my COVID infection last week and she was pretty chill about it. She drew off three vials of blood and sent me on my way.
I had a CT scan scheduled next, and was already 15 minutes late for it. I went up to the 1st floor radiology clinic. The lab is actually on floor zero, and the radiation clinics are downstairs on floor zero-zero (00). It is a strange numbering convention. Those floors don’t actually exist, they are a figment of your imagination. All the real stuff happens starting on floor #1. It’s like those hotels where you’re on the 13th physical floor, but it skips 13 and says you’re on floor 14 because if the floor said 13 you know you would be chased around all night by psychotic Jason Vorhees wielding a machete. But the truth is that it’s still the 13th floor, even if you call it Goldfish Food Flakes. Jason is still going to dash you into tiny pieces. Or, say you’re in a Trump building: you’re actually on the 13th floor but it says you’re on floor 97. We are playing fast and loose with floor numbering these days, and I think it’s contributing to the unraveling of society.
The receptionist at the cancer center’s radiology clinic explains after learning my name, that I am supposed to be at the radiology clinic of the main hospital, which requires me going out in front of the building and waiting in the cold for a shuttle that will eventually circle back to the main hospital. I ask if there is a warmer way to get there, that might involve the use of my perfectly good legs. She points to the next building over, the medical center, and explains that going left until you get to the gift shop, turning right, then walking a long way, will take me to the hospital via a concourse.
A walking adventure! It is always perfect to have a nice indoor stroll to take in the sights and feel more relaxed when you’re already 25 minutes late for your next appointment. But I found the gift shop, and strutted through the concourse and looked at the cool folk art for sale in the cabinets off to the side. I leaped out of the way when a lady on a couch dropped her metal water bottle and it rolled loudly across the entire concourse through a gaggle of utterly confused-looking people in lab coats who danced around it like it was the alien that just burst out of the chest of crewmember Kane in the movie Alien. I picked it up and walked it back to the lady, the kind of solution nobody had ever thought of before, and the look of relief on their faces made the whole endeavor worth it.
There is this weird circular hallway in the middle of the main hospital that defies all physics. The concourse connects to it, and I seemed to remember that radiology would be anti-clockwise to the right, but after going all the way around, I didn’t recognize the hallway and also weirdly, I also never came all the way back to the concourse. I guess whatever wardrobe-portal magic it uses only works if you were going clockwise. I ended up trapped in a hallway with some elevators, and eventually recognized the front desk, walked towards it, returned back to the circular hallway from a different perspective, turned left, and went straight to radiology.
I only waited a minute or two before I was taken to the CT scanner, which was staffed by Brandi and Crystal, which by a very weird coincidence are the same names as my cousins, who are sisters. They got my pants down, hooked my port line up to the iodine contrast dye injector, and the machine spun up to start taking pictures. I was told a few times to hold my breath, the table sliding me in and out of the CT scanner, then they warned me that the contrast dye is coming. Just off to the side is a syringe, thick like a beer bottle and containing almost as much clear liquid, and the plunger automatically pushes an enormous dose of the liquid into your port/IV line, you feel the hot blush of iodine hit your circulatory system. There is a little more breath-holding and sliding in and out of the scanner, and we’re done.
I made a little mental note to wear sweatpants next time, as you can just leave those on while getting a CT. And I usually wear sweatpants on chemo and hospital days, just for some reason on this day my khakis wanted to be paired up with my button-up short sleeve shirt, they convinced me it would be more classy somehow. Next time I’m just going to rock the sweats-with-dress-shirt look as usual.
I had to get back to the cancer center via the circular hallway and concourse, and since I wasn’t late for anything the circular-hallway-magic worked better this time and I found my way without incident. I also discovered that there is another concourse on the second floor (or maybe that is floor #1), that takes you over to the cancer center without you having to go outside at all. I took note of a cute little lounge or break room by that concourse that had some tables and chairs.
Next to the oncology clinic, where I was actually a half hour early and so had to wait for a while. I got weighed at 200 lbs, had quite low blood pressure at 97/127, and was put in a room to wait for the oncologist. Before too long my oncologist and his PA both showed up and asked about my last cycle’s adventures. We talked about how much COVID sucks, how the last round had the most epic nausea so far, how to deal with that nausea better if it happens again, and honestly I wasn’t sure what to say without my wife there to remind me of every complaint I made to her in the last two weeks.
When both the oncologist and his PA show up, I know there is going to be good news or bad news, or a decision to make regarding surgery so I’m waiting for the big reveal. This time it was good news! The CT scan shows that my final liver tumor has shrunk almost 25%, which is an encouraging sign. We schedule a few more rounds of chemo and another scan on Valentine’s day. I asked if we could get a romantic picture of my heart while we’re at it. The joke confuses them, because that would cost extra I think, and it would have no diagnostic value.
I go upstairs next and check in to the chemotherapy infusion clinic. There’s always quite a wait for a room after check-in, and I’m hungry for lunch so I take my pager and go down to the newly-discovered concourse to the medical center building, where there is a Panera bread store. I get a bowl of tomato soup and return to the little break room by the concourse and eat my lunch. Then I return to the infusion clinic waiting room and listen to music until my pager goes off.
It will be THREE weeks before my next chemo session, a lovely Christmas break of a week, so the nurse accesses my HAI pump, extracts the Floxuridine, and replaces it with glycerine. The glycerine is like maple syrup and takes so much longer to push in and then flush out, and then push in another syringe of it. It also takes longer for the glycerine to infuse, so I can stay away an extra week without worrying about it running dry. The process of filling the pump with glycerine is very lengthy, so the nurse and I engaged in a long conversation about Chicago and then Italian food, which is the food of her countrymen. I just *love* Italian food! She gives me a recommendation to try a certain restaurant in Raleigh and report back.
I get the dexamethasone 12mg, the 8mg zofran, and some atropine, and 30 minutes later the irinotecan starts. This time, thankfully, I didn’t have the quick-onset nausea I had in the last cycle. The 90 minutes of irinotecan infusion goes by quickly since I fell fast asleep, and then I get hooked up to the 5-fluouroracil take-home infusion pump which will infuse over the next 46 hours.
I was able to get back to the car and drive home without incident. Unusually, I was sort of hungry when I got home so I had some food, did some work, then crashed for a long nap around 6pm.
This cycle I’ve been able to eat better, and have had less nausea which is always nice. Seeing as how we all have COVID, our food was running low and I didn’t have on hand a lot of really healthy stuff, so I made a pick-up order at the store and they brought food out in a cart so I could load it into my car. From that I was able to make a nice mediterranean salad with tomato, red onion, cucumber, parsley, feta cheese, olives, sumac, olive oil, balsamic vinegar, salt and pepper. It was good but my stomach reminded me that during irinotecan, pickled stuff and vinegar upsets my digestion so I paid for that a little. The kids made a batch of buffalo wings, and I had a couple with no buffalo sauce… I think you would call that fried chicken. It was good and they’re getting very good at cooking wings.
Later in the week I ground some lamb and made a Shepherd’s Pie that hit the spot. It was a new recipe, and I like it better than some of the ones I’ve tried before.
On Wednesday I tested positive for COVID again, and also again on Friday. I feel fine, but have a bit more coughing and sniffles as I’m fighting the tail-end of the disease. I feel like it’s tougher and makes me more tired, when I’m also dealing with flushing out a chemotherapy treatment. I haven’t had a whole lot of other symptoms this cycle except for an increase in fatigue, and I’m definitely eating better and handling a wider variety of foods.
The COVID isolation was just that — isolating! I went out walking a few times just to get away from my secret lab. And I continued testing positive for COVID on Monday, the following Wednesday, and again on Friday the 23rd. But as I was feeling no symptoms, had no fever, and my cough went away, I wasn’t terribly worried. But it was discouraging to keep testing positive. I did contemplate a whole lifetime of COVID-positive tests, maybe taking on the name COVID Mary like Typhoid Mary.
On Wednesday the 21st of December I started having some transient pain in what felt like my liver — under my lowest rib on the right side — and mostly I noticed it late in the day, and it seems like it might feel worse if I’ve had sugar or fruit. The next day it had radiated almost 90% to my back. I don’t feel it when standing or sitting, but when I sit back in the recliner or lay down in bed, it was giving me increasing little spikes of pain — maybe a 4 on a scale of 10.
Friday night I watched my favorite Christmas movies, Die Hard and It’s a Wonderful Life, while wrapping Christmas presents. After leaning over presents for a few hours, my back right side pain was killing me. I went to bed and complained so much that Jen woke up and got herself ready for an emergency room visit while I found a way to fall asleep by propping up my legs.
Saturday, I was worried the pain might be liver pain and not back/musculoskeletal pain, so I had the hospital page my oncologist to call me. I never got a call back, but it was Christmas Eve so I’m not going to freak out about that. Saturday I woke up feeling a bit better, still in pain but not as intense. I’ll leave a MyChart note for Monday and see if I get an answer about it then.
I will post more news as time goes on, but that’s it for now!