I’m trying something new here. I hope to update this post every day as a way to keep a record of how I am feeling day by day of the current three-week cycle of chemotherapy. With this particular chemo-protocol, I have an infusion of Gemtax on week 1, followed by an infusion of Gemtax and of Taxotere on week 2. The third week is my favorite—rest week! No infusions that week give the meds a longer time to hit the cancer cells plus allow my body a bit of a break and recovery time before starting the next cycle all over again.
I plan to update this same post each day, adding the most recent report to the bottom of this page. The first time I post this, you will receive an email if you have signed up for notification of new posts. My understanding is that subsequent updates do not send out emails—you will need to book mark this page to manually check the latest day by day info throughout the cycle. On the plus side, you should be able to use the comments because of how this is formatted on the website. Thanks for your patience!
Cycle 4-Day 1–Tuesday 6-29: had the 1 drug infusion today. And while I was sitting there with my sister as chauffeur/companion, the hospital chaplain stopped by for another good visit. And then the dietician came for a consult. I’m losing weight too quickly. We’ve got to stabilize weight loss or we will have to cut way back on the treatment meds. Once home: why hello, chills and shakes! I’d rather you didn’t visit every first day of a new cycle… but you and your high fever are now expected. At least you are gone by morning, as usual…
Cycle 4-Day 2–Wednesday 6-30: I actually haven’t felt particularly bad today. Have had some nausea which meds mostly took care of. If I had to choose one word to summarize the day it would be “sleep”—dozing, snoring, completely out, napping, dreaming, etc.! And when I haven’t been asleep I’m trying hard to increase my calorie intake. (So weird to count calories with goal of eating more, not less! Kinda like when backpacking… but chemo is much less fun…)
Cycle 4-Day 3–Thursday 7-1: still generally following pattern of past cycles. I have less fatigue and more focus today than I expected. I’ve been reading a feel-good book off and on all day long. On the other hand, nausea has been far worse than expected today. Meds aren’t helping much. Hopefully after a good night’s sleep that won’t still be hanging on tomorrow! I’m finally getting heavy eyelids now … I’ll check in tomorrow!!
Cycle 4-Day 4–Friday 7-2 can I just skip this day? Nausea was worse, even taking meds. Even had the dry heaves at one point (moments after eating—what’s up with that?!). Spent the afternoon/evening dozing after a visit from friends earlier.
Cycle 4-Day 5–Saturday 7-3 grandkids (and my son & dil) are in town for a few weeks, staying with her family. It’s a delight to have them visit! (Even if it totally wipes me out… it’s worth it…) The girls keep busy playing with their aunt’s amazing collection of dolls & accessories. And the little guy plays with trucks, reads truck books, and plays with miniature trucks! And then the adults have time to sit and chat. We should have at least one more visit, maybe more… and we are finalizing details for 5 days together in Colorado in September for another son’s wedding. Family—the best treasure there is!
Cycle 4-Day 6–Sunday 7-4: definitely on the upswing with more energy, more appetite, less nausea, and less fatigue… even after a very busy day yesterday!
Cycle 4-Day 7-Monday 7-5: it’s both a good day and dread day. I have some energy, I have decent appetite, and I know tomorrow is starts a rough week. It feels a bit crazy to voluntarily keep doing this now that I have free negative symptoms from the cancer itself! But we have a respite right now, not a full recovery yet…
Cycle 4-Day 8- Tuesday 7-6: is the longest day of the cycle! This week my son from FL (who is visiting with his family & starting with his in-laws) took the day off work and drove me to the infusion center. It takes about 6 hrs for prep plus 2 different IV infusion plus drive time there and back. We had no earthshaking conversation but the meandering chat was a treasure! Thanks Rob!!
After getting home, as usual, I’m completely exhausted and headed to bed (after eating some cold watermelon we stopped to buy). And my “friend” the high fever visited a little later. Wasn’t as bad as sometimes—son suggested I preemptively take ibuprofen. Duh! It helped! Mostly slept the rest of the night…
Cycle 4-Day 9–Wednesday 7-7: It’s been a blah day— not good with strong (fake) steroid energy but not (yet) aching pain from meds to kick white blood cell production into high gear.
I didn’t mention yesterday that I’ve held my own and gained a pound of weight. It’s weird working hard to eat calorie dense food and celebrating weight gain after years of the opposite!! The amount of weight I’ve lost is fine but the speed it is dropping is not good.
I got outside for awhile this afternoon. The dog searched for frogs by the pond while I watched a dragonfly ballet! And I was sitting under a pine tree which boosts both endorphins and the immune system. A good touch of nature connection is always enjoyable…
Cycle 4-Day 10–Thursday 7-8: it’s been an okay day. Last day with steroids this cycle so still a little jittery and agitated and having to guard my energy. Hubby took me to the store this afternoon to pick up a few things, then suggested I use the scooter. I gave in … good thing since I didn’t have a much energy as I thought I had. Tomorrow is likely to begin a few days slide toward ache pain and fatigue… but by early next week I should be headed back to feeling human again!
Cycle 4-Day 11–Friday 7-9: surprisingly, I’m not yet feeling bad. Whew! That’s a relief! Even my hips are not painful deep inside the bones like in past cycles. They just feel a bit unstable when I’m on my feet. And I’ve had enough energy and appetite to fix a number of mini snacks to eat today. I’m thankful for this day.
Cycle 4-Day 12–Saturday 7-10: grandkids came over for one last visit before they head back home to FL. It has been such a treat to see them each week for the time they’ve been up here. I started their visit feeling poorly… but enjoying their chatter and their imagination (plus time with son & dil) soon had me feeling better! By the time they left I was beat for the rest of the day—aching from head to toe and sleepy—so it was back to bed. But oh so worth it!
Cycle 4-Day 13-Sunday 7-11: in the first three cycles this day was the “nadir” the low point. One of them the pain was so bad I was hospitalized! But, again, this Cycle isn’t so bad. I feel silly saying the same basic things over and over—fatigue, bed, some aches, mostly okay. But this is SUCH a relief as compared to the alternative! My one complaint today is my mouth has started cracking in the corners and inside my cheeks. Mouth sores are not uncommon with cancer treatment… but I’m praying this is just a little thing today and doesn’t explode into a big problem! It’s hard enough to eat when the food tastes like cardboard or metal. I can’t imagine keeping a stable weight if my mouth has open sores…. (trying not to borrow trouble from tomorrow…)
Cycle 4-Day 14–Monday 7-12: I’ve got the grumpies today. This should be a feeling better and better point in the cycle. But today I’ve got weary muscles (from simple walking around the house after too much laying down time) and I’ve had a number of episodes of stabbing back pain. Grrrr! At least I’ve had a series of decent days… but that still doesn’t turn me into sunshine susie! The sun just came out from behind the clouds, I just finished a Popsicle, and I’ve figured out a transportation schedule for a crazy hectic week of appointments and obligations. So I’ll count these as my three good things for today and hope tomorrow physical and emotional feelings better line up!
Cycle 4-Day 15–Tuesday 7-13: another okay day. GI imbalances are irritating (diarrhea & nausea) so I finally gave in and took otc Imodium… which I know will then make me constipated. I hate being a whiner, but I also hate not being able to find balance!
Hubby, daughter & dog headed back to our small town today for her to go to her writers group and so hubby can do some in person work at the office. I took an extra day + to be by myself at our summer place. It’s good to have time alone but I horribly miss family being right here plus it’s so quiet. (And the dog isn’t even here for me to talk to!)
One more day to hang out tomorrow, then scans on Thursday and follow up doctor appts on Friday. This could be a big deal turning point… or more of the same old same old.
Cycle 4-Day 16–Wednesday 7-14: Today is my mom’s birthday. Can I just decide that she’s going to live for many more years… and that I’m going to outlive her?? I’ve had this thought more than once today…
i also finished another Art Journal page today. I will post photos and explain more fully as a separate blog post but decided to bring it up today. Taking opioid pain meds and anti-nausea meds daily is a struggle for me. It makes sense in my head that my medical team wants to ease side effects as much as possible so any energy I have goes to healing. But my emotions just don’t agree. I finally figured out it’s a multi-layered challenge (of course!). I take pride in being generally very healthy… but taking meds for chronic issues negates that image. And opioids are dangerous and put one at risk of addiction. Why would I want to risk that? And deepest of all, in my emotions the doctors don’t worry about giving opioids to patients who are dying because any addiction is a moot point… and I don’t want to be dying so I shouldn’t take these meds. SIGH!!! I’ve identified the struggle and the lies … now how do I move past this emotionally? Another topic for my therapist I guess…
Tomorrow is scan day/Friday is doctor appointments.
Cycle 4-Day 17–Thursday 7-15: the stress of scan day is over for another cycle. I definitely wish this was a cancer which could be monitored by blood work and didn’t need visual monitoring! Things went smoothly this morning from the rides I had arranged to scan prep (other than 1 side of port not wanting to do it’s job at first) to managing to finish most of the contrast dye in water I’m supposed to swig. As always, after the scan I like to get a good lunch (fasting before the test is no fun)… this time mom & I went out for her birthday. And once I get home and adrenaline drops, I tend to crash and nap most of the rest of the day. (Sorry for ignoring anyone who messaged or called…)
Tomorrow is follow up appt with oncologist to get scan results and decide what’s next. Plus a follow up appt with the palliative team to decide if we need to change any meds. Then we are taking some time for low key day trip relaxing this weekend!
cycle 4-Day 18–Friday 7-16: Woohoo! We have clear progress and unequivocal good news! Tumors have shrunk significantly. Next week I start cycle 5 of the same chemo, looking for a bit more shrinkage while we can hopefully get abdominal surgery scheduled. How do I feel?? Wonderful and weary. Excited and exhausted. Emotions all over the place.
Hubby and I had mini getaways planned for this weekend (which we started this afternoon by taking a nap! Haha). We figured this would give us space to hold whatever emotions we might have. Glad we are celebrating!!
And to repeat myself (because it’s important)— I’m so grateful to Jesus for holding me close no matter what the outcome might have been. And I can’t imagine walking this road without YOUR support, prayers, encouragement, and good wishes!
Cycle 4-Day 19–Saturday 7-17: we slept in, then went and dodged rain while we explored Kingwood Estate & Gardens. It is a phenomenal place not far from where we live… that we had never heard of before! Downside? Not many places to sit when my leg muscles were threatening to quit…
Then we went to a low key celebration for hubby’s mom’s 90th bday. From my personal perspective, it was good to celebrate our good news with extended family!
Boy, was I ready for bed when we got home! I could hardly get up the stairs…
Cycle 4-Day 20–Sunday 7-18: We started our overnight getaway with an extended top down drive across the state. I remembered to wear a hat to keep my poor bald head from burning…
We spent a few hours at a county history museum that was packed to overflowing with a wide variety of memorabilia. The guide was a good storyteller (but clueless about bald head/cancer exhaustion/needing to sit/etc!) Eventually we finished our drive to Marietta OH, happy to discover that the historic waterfront hotel was the same price as the soul-less chains. We found a little outdoor Filipino restaurant for supper, then I took a long nap, before a bedtime walk along the Ohio river. (I’m shocked I managed as much as I did!)
cycle 4-Day 21–Monday 7-19: it’s the last day of the cycle! Tomorrow starts over again with another infusion day. On this day, we were finishing our mini-getaway by enjoying a few last things in Marietta Ohio. The museums were interesting, as always, but the ride on a stern wheel paddle boat was a treat! Just relaxing and watching the shore slide by…
That seems like a good metaphor for the past 5.5 months—taking things as they came along and just letting things slide on by! It’s a relief to finally have specific plans and progress! But that’s another post for another day… not part of this day by day report of a chemo cycle!