Chemotherapy #19

Infusion #18, with a smile

Let’s start by talking about the end of chemotherapy #18 a little. The double-whammy chemotherapy was tough. I avoided touching my head because I was losing 20-30 hairs each time I did. The Friday evening and Saturday after chemo #18, I don’t even remember because I slept through most of it, and part of Sunday too. Mostly a waste of a weekend. Coming off the steroids is terrible because for Wednesday, and Thursday the daily dose of 4mg dexamethasone keeps you artificially pumped and Friday when you would normally take the steroid, you begin the process of post-steroid crashing.

The only nice thing about losing the steroids is that my blood sugars are returning from low earth orbit back into the 90s and 100s, and I can have a little bit of ice cream and a few bonus carbohydrates that would be insane and suicidal on the dexamethasone. I would do almost anything for ice cream, I only made it to adulthood because there weren’t any white panel vans offering it when I was a kid.

I have to give full credit to the oncology PA, who kindly gave me a regimen of imodium doses, 2 each morning on Wednesday, Thursday, and 1 on Friday, so that I would have solid poops for cycle 18. When you make poopy 3 times a day versus 8 or 9, things are so much more tolerable. This really felt like the best thing that ever happened to me, and I’m definitely putting her in my will after this. I think now, that I really can do this!

The good week (the week between chemo infusions), really started on Tuesday evening and it was a great week. I felt like my core muscles were stronger and less achy. I did a lot of cleaning to get myself in shape for returning to work the next week. I still can’t lift more than 10 lbs but I did sweeping, cleaning the kitchen, light cleaning of the workshop, garage, and the secret lab. I cleared off the kitchen table (it has since gotten cluttered again). I found the sink waiting for me, taunting me, daring me to wash the dishes.

Oh, the humanity!

Tuesday was also election day! I voted early but also woke up at 5am to see the incredible lunar eclipse. A snap from my phone can’t do it justice. Stand really far back from your screen and it will seem sorta pretty:

Lunar Eclipse

These last couple of weeks on leave from work were making me stir-crazy. I miss going to the office and working with the most incredible team of smart, motivated people. The rest of the week I passed the time ministering to friends on the phone and getting my return-to-work authorization paperwork filled out by my surgeon. They FAXed the paperwork to my workplace and I got a phone call from HR confirming I should come back to work on November 14. YAY!

By Friday I was feeling quite full of energy and decided to drive to Virginia, take my friend Robert out to a delicious birthday dinner at the Roosevelt in Richmond. I don’t think I’ve ever had a bad meal there, it is always an incredible treat.

After dinner I drove the rest of the way up to DC and visit my sister and parents. My aunt and cousin had driven down from New York to visit them, and I was excited to see them after soooooooooooo very long. They are some of my favorite people.

The first 2.5 hours of driving in my little Brabus Smart car was fun, I rocked out to tunes on the sweet stereo system, and then had the dinner break with my friend. Driving the next hour was still pretty fun, but the last half hour I was tapped out and quite a lot more tired than I care to admit. I arrived at 10pm and visited my parents’ house for an hour or so, seeing my mom, aunt, and cousin. Then I went to my sister’s house where she had prepared the guest room for me… and it was heavenly. The house was so quiet and peaceful, the bed was warm and comfy, and I fell asleep in about ten seconds, no joke. I woke up absolutely refreshed about 8 or 9 hours later, it was truly the best night’s sleep I have had in longer than I can remember.

The next day we had a nice lunch with my mom’s cousin C. and her two children, at this little restaurant in Tyson’s Corner called Flower Child. It had so many great vegetarian and vegan options! And of course animal proteins for everyone else. I am not vegetarian by the way, but there are many days in the chemo cycle where vegetarian food appeals to me a lot more than steak and potatoes.

I had a vegetarian shakshuka that was a tiny bit too spicy for me with the FOLFIRI issues, but I enjoyed it so very much. It was wonderful meeting our cousins!

Shakshuka at Flower Child

We got to visit the rest of the day, had a dinner of Mom’s wonderful corn chowder which made my tummy very happy, and I spent another perfect sleepy night in my sister’s guest room. We woke up early in the morning and I joined my Dad and sister for their usual Sunday breakfast. It was good to see my father so relaxed and he seemed very happy to spend time with his kids.

About mid-day Sunday I headed home, but took a quick detour to Williamsburg to visit dear friends and get some dressing from the Cheese Shop. I had dinner at Second Street Restaurant & Tavern then caught the Jamestown-Scotland Ferry so that I could make a more direct route home via route 58. Sadly, that wasn’t really faster due to farm traffic and random slow drivers on two lane roads, but I enjoyed the relaxing drive nonetheless, and it was lovely to crash in my own bed at home.

On Monday I went back to work!!! I decided to go into the office since I was feeling quite well, and was a little cowed by the 2,000 emails in my Outlook box. It was nice to have someone else make me food in the downstairs cafeteria, and to see some of my coworkers again! What a treat! I admit people dropped by and talked to me a lot more than on a usual day, so the first day back wasn’t my most productive ever, but it was a fantastic return to the office.

On Tuesday the 15th I had to be at the cancer center unusually early — at 7:45am. I started the day with an imodium just to avoid the liquidy stools that irinotecan always causes during the infusion.

I had my port accessed at the lab, lots of blood got drawn including three vials for the Signatera test, a cholesterol test, HgbA1c, CBC, and CMP tests. The results were all not too terrible. My cholesterol was 117 total, 45 LDL, 50 HDL, and 111 Triglycerides. My A1C was 6.0, pretty good, and my HDL/Trig ratio was 2.2 (this is really the most important figure in your cholesterol test… you want this ratio under 2 for acceptable insulin resistance, higher ratios show a much higher incidence of heart disease). My liver enzymes were a bit high but not terrible, and my hemoglobin and platelets are below normal but as expected during chemo. So based on these results we decided to do the next round of chemotherapy.

We went to the infusion room waiting area and my wife went and got some Panera tomato soup and mac and cheese for my lunch, since I had been fasting for 12 hours for the cholesterol test, I was ravenously hungry. We got an infusion room reasonably quickly and I received my 12mg dexamethasone and 8mg zofran, waited 30 minutes, had some atropine, then the irinotecan infusion. While that was going on, my favorite nurse O. trained another nurse to access the HAI pump’s lumen. He did a great job, I barely felt the stick and he accessed the reservoir quickly. The floxuridine chemo flowed up into the syringe, then the reservoir was filled with saline, then flushed out, then filled with saline/heparin so that I would have a 2 week break from the directed liver chemo. Nurse O. was nice enough to snap a photo of the needle for me, it’s pretty cool.

For those who aren’t faint of heart and you find medical stuff fascinating, expand below to see the needle:

Show Carnage

This infusion, I didn’t have the stomach cramps/spasms so badly which was nice. I also didn’t have to run to the toilet halfway through, maybe this was due to the morning’s imodium. They unplugged the irinotecan when it was finished and hooked up my 46-hour 5-fluororacil infusion pack, scheduled me for takedown at 11:30am Thursday, and cut me loose. We left the infusion clinic around 1pm — a new early record!

Thursday’s chemo take-down was kind of SNAFU’d. Normally I get a call from the home healthcare nurses sometime Wednesday confirming the time and I didn’t get a call. I left a message asking about it, then also called and talked to a human who said the scheduling person was out at the moment, and they would get in touch. I waited Thursday for someone to show up and it didn’t happen so I went out to lunch instead, clamping my line when the pump alarm went off and shutting the pump down. Finally I got notification that the take-down would be Friday at noon (!) which isn’t right, so I notified them it should be Thursday. Apparently the nursing company got the wrong date from the cancer center. They sent a nurse at 5pm to do the take-down and flush my port with saline and heparin. I was super happy to be free and unplugged! It’s a pain lugging the infusion pump around with you all day, and sleeping with it at night.

As for side effects, Wednesday and Thursday’s 2 imodiums really did the trick, bringing me down to 3 tolerable BMs a day that weren’t too painful to deal with, though irinotecan always burns like hot peppers for 3-4 days. The steroids also kept me energetic enough that I even went into the office to work, since my lab at home was quite chilly at 61 degrees. Friday late, I was feeling dog-tired when the steroids wore off, and slept in Saturday as long as I could. Saturday I slept a lot during the day, falling asleep several times in the recliner downstairs while I tried to play RimWorld on the computer. I woke up several times to find all hell had broken loose in my space town while I was sleeping. Sometimes my oldest son comes and checks my pulse to make sure I’m not dead.

It’s all a bit fuzzy now. I got to play some Thanksgiving pre-play pool league matches this week and won 8-ball against a 5 (I am a 4), and lost 9-ball to a very good 4 (I am also a 4). I think I did well for not playing pool matches for more than 2 months.

So far, as of Monday evening, I’m feeling okay! Without the double-whammy chemo there are fewer side effects, the hair loss isn’t so bad if I don’t brush or comb my hair, poops are tolerable this time, and starting Monday I didn’t need naps during the day! I’m planning to commute and work in the office this week, and for Thursday I’m even going to make some Indian Wedding Hash to contribute to the dinner at my in-laws’ house. I am looking forward to this good week so we can get to #20 and the next double-whammy chemo next week.

9 thoughts on “Chemotherapy #19

  1. You are a Trooper, glad you are feeling a little better and back to work. The best part of our trip was to see you. Thank you so much for making the trip. Stay strong and tough and remember how much we all Love and pray for you.โค๐Ÿ’‹๐Ÿ™๐Ÿ™๐Ÿ™๐Ÿ™

    • All those prayers and love help me every day! Seeing you guys boosted my mood and energy 1000% after being cooped up in the recliner at home, recovering. It was worth the drive to get to see you! Love you!

  2. You are absolutely my hero. I canโ€™t believe what you are going through and how brave you are to get through all of this. Love you and think about you all the time. May God bless you everyday.

    • Thank you! I feel so lucky to have gotten to see you when you and my aunts came through NC on the way south. We had such a long lunch and wonderful conversations. I feel honored to be in your thoughts. Love you!!

  3. I actually liked your very detailed journal of what you are going through. If you need an alternate to do the flush with saline and heparin, I am your candidate as I had to do this for Bob when he had bad cellulitis. Daily, twice daily, I had to flush his IV tube and then slowly administer Vancomycin . It tool an hour to do each time. Not bad for a CPA with no infusion nurse training. I pray for you nightly. You are like a second son to me and I will never forget you being there for me when Kenny had died. Love, Marcia

    • It is so wonderful to hear from you! The nurse asked me this time if I knew how to do the flush myself, they always give me a kit of everything that is needed to do it. I’ve seen it done dozens of times now, and the only part that might be hard for me is pulling the Huber needle out. But it is nice to know I have other options on the table. I would just hate to mess it up and screw up my port, I take such careful care of it since it treats me well and saves me from the pain of getting IVs.

      It was of course a miracle that I happened to be in your area when Kenny died, and I will never forget being there and feeling so deeply welcome in your family!

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