I’m learning to deal with Cancer Plot Twists as things seem to always be changing! I love adventure…but at this point I would certainly be happy for some “boring” routine and stability. Last week I started summarizing multiple days of mini updates as a blog post. That way each of you who have subscribed to email notifications will receive a direct link to this post. I will still post a mini update occasionally by changing the intro page for Health Adventures on this website. (In the virtual world a page and a post are two VERY different animals!) To get the latest news immediately, you must bookmark the intro page and check it for yourself—no automated notifications for changes to webpages are available. Then every week or so, I will combine those into a blog post, and you WILL receive notification of new blog posts if you have subscribed to the email list. Is that all clear as mud?! All rightee then… let’s talk about all the cancer plot twists from this past week.
This past week started with my second IV infusion of chemotherapy “poison” in our ongoing attempt to get tumor growth under control. A typical pattern for many patients is chemo day, fatigue that evening, gradually feeling bad for a few days after that, then gradual improvement until the day or two before the next infusion. We could say that is the typical plot of a cancer treatment story.
But as I said in the intro, I don’t seem to do anything in the “normal” way. I had a cancer plot twist followed by an even larger plot disruption! The mini-updates are below, in order of occurrence. If I was following the original plot, yesterday started week three of chemo—a week of no additional medication, supposedly a week of rest. As you will see, I’m still in the middle of plot disruption… but at least I have plenty of time to rest!
Tuesday, May 4, 2021 — This was chemo infusion day 2–same IV med slowly dripped into my veins over 90 minutes, immediately followed by a new more toxic drug administered over 60 minutes. It’s a bit scary when the nurse has to sit in the room and observe me for the first 15 minutes the med is dripping to make sure I don’t have any serious reactions or side effects. I am continuing to take anti-nausea meds proactively since the first chemo day last week. With this new toxic med, I’m on three days of steroids plus have a little timer attached to my upper arm to auto-inject a dose of Neulasta to help my white blood cell count stay in normal range. And because pushing the bone marrow to produce white blood cells more quickly than usual can cause an inflammatory pain, I’m taking benedryl or claritin now to proactively prevent some of that pain. A huge plus to this day was a long visit with the hospital chaplain we had met on my first day in the clinical trial two months ago.
Wednesday pm, May 5, 2021 — Hubby and I are shaking our heads in bewilderment at how I’m feeling. Definitely a cancer plot twist! I was full of energy as we left the hospital. I was seriously talking about grabbing some supper when we got home, then asking eldest son (who stayed a few weeks longer than the rest of the visiting kids) to drive me to Walmart to grab additional comfy things to wear or use during this round of 2 cycles of chemo. But then… everything CRASHED!! I was exhausted, I had a fever over 100, I had horrid nausea and heart burn, I couldn’t sleep but I couldn’t get comfortable. Then this morning, I popped up out of bed with energy and feeling fine. I got daughter up for school (but let Daddy drive her, I’m tryyyyying to be “good,” really!) I had a good chat with eldest son while I was eating leftovers of the yummy meal he fixed for everyone last night. I had a long catch-up phone call with a friend. I ate a good lunch. I forced myself to lay down and rest but was too energetic to nap. I took a handful of meds around 12:30 and realized it had been a full 12 hours since I had taken any of the meds…and I was feeling great! I’m happy to inform you that I’m still feeling good this evening. Perhaps I may ask hubby to take me shopping. Day 1 of chemo I’m “supposed to” feel decent. But then feel worst over days 2-3. So far that’s not my pattern… I’m praying this light side effects response will continue but know I will get flattened again at some point in the coming days.
Friday pm, May 7, 2021 — I stayed hyped and full of energy through Thursday morning. Then gradually, ever so slowly I slid doooowwwwwnnnn into another crash. Same symptoms: nausea, heartburn, fever, discomfort in any position, foggy brain, and more. Checking with my doc’s office today, apparently this high/low pattern is not uncommon when on steroids for a few days. At my next appointment in 10 days or so, I plan to ask what the reasons would be to only take that steroid for three days around the 2nd infusion of the entire 3-week cycle or if I could take a lower dose of steroid for a longer time. Still not feeling good this morning–it’s been a day to be grateful for a comfy bed and for big windows that let lots of light into the bedroom.
One different thing this morning… I woke up as a one-man-band-street-performer. (Go look ’em up, really! They are hilarious!) When I got out of bed this morning and every time I tried to move around today: My hips go clickety-clack, my knees wobble, my shoulders join in with a pop pop while my thighs go jiggle, jiggle. Don’t forget about my head pounding out a crazy rhythm, thump, thump, thump. My back adds a shiver up, shiver down and my feet insist on tickle, tackle, pins and needles! Apparently, this, too, is “normal” at this stage. Drug #2 from Tuesday kills all fast-growing cells, including white blood cells. To boost my immune system, I was given a shot to throw white blood cell production into high speed in my bone marrow. And that, supposedly, explains the floppiness and noisiness in my bones! (Thanks to daughter Anna who came up with the words for the different sounds. My brain fog couldn’t have done it!)
Sunday pm, May 9, 2021 — A few texts sent to our far-flung kids on Mother’s Day evening. I’m so glad we all gathered a few weeks ago. I would have been extra grumpy if I was at urgent care and missing time with them today! “We are at the James Cancer Center urgent care, waiting on labs and for a CT scan to be done. I have had stabbing back pain all day for no reason we can think of. The Dilaudid they gave me is kicking in. I’m still aware of the jolts of pain every few minutes but don’t seem to care anymore! HA!”
And then later in the evening: “Docs decided they want an MRI to better figure out the cause of low back pain. Those tests take many weeks to schedule as an outpatient and none of us think it is wise to delay… so I’m being admitted sometime soon. The MRI will be done later tonight or in the morning [or sometime Monday, or maybe during the night on Monday, or what about Tuesday? MRI’s are an in-high-demand procedure!] Randy has headed home for the night. As long as they keep pain under control and eventually figure out the cause, I’m happy to stay, even though it’s a cancer plot twist.
What do we need right now?? Prayers, encouragement, cute animal videos texted to me, anything to keep me occupied while we “hurry up and wait!” Don’t worry, both SASSEM sloth and hubby are here to keep me company.
Monday pm, May 10, 2021 — Yep, it has definitely been a hurry-up-and-wait kinda day. I was admitted to the James/OSU last night. Sleep was disrupted, as usual, by taking vital signs, checking on pain levels, giving more pain meds, and even a doctor doing an ortho assessment. I’m happy to report today that food is decent, the quiet is peaceful, hubby is allowed to be here with me all day (while he tries to also get some remote work done), and I have beautiful views of the metropolitan area from our 19th floor aerie! Had a series of xrays done today–to rule out back pain being caused by bone/ortho reasons. Took a meandering walk with hubby around the loop of rooms. Dozed, texted with a friend, had vitals recorded and pain meds given, napped, chatted with hubby, ate lunch, dozed, had vitals and pain meds, and on and on this oh-so-exciting (??!!) day progressed. Still waiting for an MRI, possibly tonight during the night, more likely sometime late afternoon tomorrow (apparently, I’m still about halfway down the list from being added to the list last night!!) As always, thank you SO much for your concern, your encouragement, your prayers, and your support. We couldn’t get through this without all of you!
Wednesday, May 12, 2021 – I keep thinking I will be discharged so I should wait to wrap up this post at a logical stopping spot. However, cancer plot twists continue to occur, I’m still at the hospital, but they assure me I will probably go home today (same as Tuesday, same as Monday, oops, not yet!) Nothing specific has been found as the cause of this back pain, but I have an updated meds list from the pain & palliative team, and now we wait for the various docs to all agree at the same time that I can GO HOME! Don’t worry… you will hear me yell “Hallelujah!” when they finally get their act together!
Since I am an active cancer patient yet again, I decided to add a “health adventures” tab to my website. You can follow my current cancer journey in a couple of ways:
- click HERE to see frequent mini updates plus links to the pages below.
- click HERE to see a compilation of all the mini updates archived in one place: and
- click HERE to see photos and read blog stories about the ups and downs of this stressful journey plus posts from past health challenges.
- Feel free to poke around the site and check out other Big Epic Adventures I have documented in the past—backpacking and other outdoor fun, becoming a certified Nature and Forest Guide, trip reports, and other daily activities.
If you hate to miss the latest reports from my Cancer Journey, you can bookmark this intro page to read frequent mini-updates OR you can scroll to the bottom of any page and sign up to receive an email notification whenever I make a new full-length blog post (not just an update to the intro page) which will include stories, photos, explanations, and a weekly summary of mini updates.
(THANK YOU for following with me on this cancer journey! I appreciate every comment, encouragement, prayer, good wishes, little gifties and other types of support. I can’t imagine doing this alone…)