New schedule, day eight

• Bloodwork and treatment (Folfori #6 - includes Irinotecan #13 and 5-FU) at Siteman West County

We’re going for a repeat of last week, minus the bone pain.

Depending on whether or not IV fluids are ever a part of your life, you may or may not know that Hurricane Maria’s destruction in Puerto Rico has led to a shortage of available IV bags and fluids. This article explains it well: https://mobile.nytimes.com/2017/10/23/health/puerto-rico-hurricane-maria-drug-shortage.html?referer=. This affects me because many of my chemotherapy drugs are supposed to be diluted with IV fluids before being administered to me. And not just me, thousands and thousands of patients every day.

Today marks chemo #60.

New schedule, day five

• Neupogen injection at Siteman West County

Within an hour or so of my injection this morning, I had bone pain in my lower back and hips that was spasming so bad I couldn’t get out of bed. Nurses say that Claritin helps with Neupogen bone pain so I tried that, but it didn’t help me in this case. Héctor had to come home and care for me, it left me feeling helpless and scared. I think this the first time we’ve had the Neupogen injections so close to treatment, so maybe that’s why it was so bad. All I know is that it was really scary for us both.

New schedule, day four

• Neupogen injection at Siteman West County

Today was a test day to see if it will be possible for me to have this same treatment next Monday and be able to travel (just a short road trip) next Thursday. If I had a magic 8 ball, I think the outcome would not look good.

New schedule, day three

• Neupogen injection at Siteman West County

I’m still really tired today and dealing with some nausea, which leads to not eating well, which cycles back to having no energy and being tired. #viciouscycle

I have a handful of half-written blog posts from the last few weeks but I can’t find the right attitude or strength to finish them. I’ve had a lot on my mind, my scan results, a lengthy appointment with Dr. T, surgery to replace my stent, the loss of my cat after 16 years, a last party to celebrate the marathon with my friends and family, the video production of a story about our marathon group, possibly writing something about the marathon in a more public space and I can’t even remember what else. Except pain, I’m having trouble forgetting that one. A new tumor in the capsule part of my liver (a part that has a lot of nerve endings) is causing a lot of pain. Stronger pain meds mean more time feeling groggy and that’s definitely been the case since we switched last Tuesday. More rambling perhaps, too?

New schedule, day two

• 5-FU pump disconnect appointment at Siteman West County

The new plan calls for more frequent chemo at lower doses, so the usual 46 hours of 5-FU and fanny pack fun is only 23 hours this week. Dr. T is hopeful that the lower doses will cause fewer side effects too... but I’ve slept the whole day. #fatigueisnojoke

New schedule, day one

• Bloodwork and treatment (Folfori #5 - includes Irinotecan #12 and 5-FU) at Siteman West County

While talking through the timing of tomorrow’s 5-FU pump disconnect appointment, nurse A and I realized that I have appointments every day this week and every day next week at Siteman West County. How’d I get so lucky? 🍀

LGB

All before noon

• Neupogen injection at Siteman West County and CT scan at Barnes West County Imaging Center

Window view

• Bloodwork and treatment (Irinotecan #11) at Siteman West County

Orange bits

• Neupogen injection at Siteman West County

See the nice orange plastic bits... Neupogen, not it's cousin Zarxio that causes me so much bone pain. (I'm not injecting myself in the leg here, I'm just holding the syringe to warm it up while my nurse takes my vitals and asks me the 100 questions they have to ask each time.) I bet that I could repeat them here by memory. "How are you feeling?" "How's your appetite?" "Bowels moving okay?" "Any falls since we saw you last (yesterday)?" "Any new numbness or tingling?" "Any pain that you acknowledge?" "Any mouth sores?" "Any fever?" "Drinking enough fluids?" "Any bone pain?" Hmm I am missing a couple, I'll pay closer attention tomorrow.