Each time I add a new mini-update on the landing page for Health Adventures, I will move the previous summary to this page. This will become a history of my journey and what I have shared with others.
Monday pm, June 28, 2021 — Two weeks after the heavy-duty-double-round and I’m feeling good. This past weekend, I had enough energy for visits from a handful of different friends. It was SOOOOO good to see folks in person, even just for short visits! And now, of course, the next chemotherapy cycle starts again tomorrow. So it’s off to the infusion center for med #1 after checking in with my CNP to make sure all lab numbers are still showing healthy. This is beginning to feel a bit more routine–who ever thought I would say that about barbaric treatments?! But at least we feel like we know my patterns/reactions fairly well. It’s a relief to have some things no longer be a complete guessing game. I will TRY To update more often–but if not, just assume it’s the same old, same old which gives little motivation to communicate to all of you!
Monday pm, June 14, 2021 — It has been another mostly good day around here. A good balance between time with a friend and plenty of naps. It has been a day where I’m taking the pain meds to make sure discomfort doesn’t get ahead of me, but where in the moment it doesn’t feel necessary. (On Friday, I have another appointment with the pain & palliative care team to discuss how we might want to adjust the regimen to deal with side effects.)
Psychologically, Monday nights of weeks 1 and 2 in the cycle are really hard. I know I have to get up in the morning and head back down to the cancer center for another few hours of poison dripping into my veins. (At least I have a port so no IV or needle stick needed… YAY!) I’m going from feeling decent to willingly, voluntarily taking actions which will make me feel horrid in the next few days. Who is crazy enough to do such a thing?! THANKS for your encouragement, prayers, and good words that keep me going!
IF this week is similar to week two of the previous cycles, I will actually have lots of fake energy through Thursday morning, while I am on a steroid. Then it could well be a rough weekend… I’ll try to let you know!
Thursday, June 10, 2021 — yesterday was generally more positive than expected for the day after an infusion. (And after a bad reaction middle of the night with high fever, disorientation and vomiting.) By daytime, I still had a strong appetite. I had enough energy to do a few “chores” including one load of laundry. (It’s amazing how this work becomes a privilege to get excited about when I haven’t been able to do it for months!)
i woke up a number of times during the night but went right back to sleep. I notice less energy this morning, less appetite, and a few aches and pains similar to previous cycles. My bed is humming lullabies so I suspect naps will be part of my day!
I’ll try to keep you updated…
Tuesday late afternoon, June 8, 2021 — Good news! CT scans show very limited tumors growth and some shrinkage over the past 6 weeks (2 cycles of treatments). So I’m currently in the infusion center, receiving Cycle 3, Week 1 infusion. If things are like the first two cycles, I will crash when we get home tonight, be pretty fatigued four a few days, but not achy because we finally have a good pain control plan. I might get more posted in the next few days, otherwise I will reappear this weekend.
Monday pm, June 7, 2021 — Two decent days (Thurs & Fri) and three good days (Sat -Mon). One more reason I’m praying that when we find out results of scans b tomorrow afternoon that we will hear this current chemo mix is effectively killing cancer cells and I can stay on this mix through the summer. It would be so encouraging to look forward to 5+ good days in a row out of every 3 week cycle!
Today I swept the kitchen floor, finished an Art Journal page about the challenges of “Toddler Tumors,” I cooked supper for us, and hubby and I took a walk around the barns. That might not sound like much but it’s far more activity than I’ve managed for weeks!
Saturday pm, June 5, 2021 — I am very happy to let you know that today was a good day. I had some energy and no fatigue. I did a few bites of “chores” spread throughout the day (some dishes, wiping a counter, 1 small laundry load). And before you get all preachy and remind me that my family can do b those things and I should sit back down and rest… these were token tasks, reminding me that being a family means helping as we can… and today these were things I COULD do!
Hubby and I took a drive in the country. We wandered through a quirky antiques shop spread through 2 outbuildings and a barn. (And I’ve got some ideas for Christmas gifties. Yep, I’m one of “those people” with Christmas in my mind all the time!) They didn’t have the furniture we still want… which means future wandering. Yay!
When we got home I did plenty of resting—my body reminded me I haven’t walked this much in weeks. But I was physically tired, exhausted. Win!
Hopefully, tomorrow is another good day as well!
Thursday, June 3, 2021 — I am half way through “Rest Week” of cycle 2 of chemo therapy. I’m feeling okay–not bad, not good, but also not exhausted, depleted, achy, or with an upset GI tract. So… I’ll take it! (Not like I get a choice about it, anyways, right?!) I AM choosing to try to rest and relax in this day, this hour, this moment. By next week we will have big news–either that this chemo treatment IS working to shrink the tumors, or that it is doing nothing and it’s time to move on to another chemo option. If I let myself think about this for more than a few minutes I tend toward panic, feeling like there is no way I can handle “bad news.” So, I keep reminding myself that I am not doing any of this alone–God is right here beside me, and family and friends keep me surrounded with encouragement, funny photos or videos, notes, wee gifties, prayers, shared peaceful music, and an occasional cup of fancy coffee or yummy dessert. And I’m comforted to know that none of you are gonna run away, no matter what news we have by midweek.
That’s it for mini-update for tonight. I’m gonna go write a blog post or two to send to your lonely email box. (Sorry about the rarity of posts–when I’m feeling good I don’t want to sit and type. And when I’m feeling terrible I don’t have energy to holler for encouragement!)
Thursday, May 27, 2021 — Happy Birthday to me! And happy birthday to James, our son who graduated to heaven in 2008!
As I’ve said before, it’s hard to make plans with no clue of how ill be feeling. I had the double meds infusion on Tuesday so if like last cycle Thursday and Friday will be crash days… so we tentatively plan to do a bit of bday sometime this weekend…
I’ve still got some steroid jiggly energy but can feel fatigue lurking. (I take steroids for 3 days around the 2nd med infusion to help counteract worst of fatigue and other side effects—but then I have to be careful not to overdraw my limited true physical energy by buzzing around on false meds energy…)
Monday pm, May 24, 2019 — Super quick summary here then I will make a longer stream-of-consciousness post on the blog itself. I would apologize for not sticking to plan A… or plan Z… or even plot-twist plan S. But I’m very slowly learning to stop trying to make schedules and plans and to-do-lists. When in the middle of chemo, those things are helpful as guides, but I absolutely can not control how my body reacts to this poison and thus can not actually commit to fulfilling plans. I will apologize to anyone who is worried that not hearing from me means bad news. In this particular week, it simply means I’ve been napping, sleeping, dozing, dreaming, snoozing, resting, relaxing, pausing, nodding off, taking a siesta, and more… often in the middle of a word or sentence while talking or texting!
Tomorrow morning bright and early I go back for the double med, doozy of an infusion day. It might completely knock me out… or I may be pumped up with energy from the steroid I take to counteract chemo effects. I’ll let you know (sometime– A, B, Z, or S!!) how I’m doing.
Wednesday, May 19, 2021 — As I’ve said before, I’m usually Susie Sunshine, looking for and celebrating the positive things. But, I’m struggling this morning. I was exhausted when we got home last night and fell asleep mid-conversation, I think! But this morning **shhhh, whisper this… I feel fine, I feel human, I feel good*** But here is the silly picture I have in my head—a huge Mack truck slinking around corners, tryin to keep me from seeing him, waiting for the perfect moment to surprise me, and run me over… SPLAT! I will let you know what really happens!
Tuesday, May 18, 2021 — Yes, today is Chemo Day again — just Med #1. But instead of a first thing in the morning schedule, we leave at lunch time for labs, doctor appt, and finally the chemo infusion late afternoon. I have always prided myself in having fun learning new things and trying new experiences… but in the midst of life feeling out of my control with this cancer recurrence, I have currently lost my equanimity in the face of unexpected and different. I LOVE the idea of no more repeated needle sticks/digs until they finally find a vein each time I go in. And I am confident that i will love how much easier all this is with a port… but I’ve been a basket-case yesterday and today, teary and anxious because I don’t know how things work and what to expect with this port. Sheesh! I’m looking forward to this afternoon being over so it will be another new thing mastered!
Monday, May 17, 2021 — unexpectedly I’m currently following the expected path for the type of chemo that I’m on. If you remember, each cycle is made of 3 weeks—med 1, med 1&2, rest week. Then repeat the cycle. Since Thursday, I have felt “decent”—not fully good but much better than Mack-truck level of pain, sickness, and discomfort. This “decent” feeling for a few days is definitely what we pray for during the rest week. Hopefully I regain enough energy to help me dive back into letting poison drip into my veins again, tomorrow and the following Tuesday. (Am I crazy? No… it only seems that way from outside. I’m just muddling along, making the best decisions we can to help me live as long as possible!) As always, thanks for your comments, texts, encouragement, and prayers. Your support really does make a difference to me!
Friday, May 14, 2021 — (recreated from texts) This was another of the infamous hurry up and wait days! I had a morning appt with the palliative care group. They are now an official part of my team to help oversee and coordinate dealing with symptoms such as pain, nausea, bowel movements, fatigue, dry mouth, and anything else that bothers me.
Then Friday late afternoon I had minor surgery to implant a port under the skin in my right upper chest with a tube under the skin in a vein running toward my heart. Everything went smoothly—and quite honestly it was an easier procedure and easier recovery than the biopsies I’ve had. (All done by the same Intervention Radiology Department.)
I had to fast until the procedure was done in late afternoon… so when we got out, we went to a fancy burger restaurant. Mmmm-mmmm! So good!
Thursday, May 13, 2021 — I got home yesterday evening–having not eaten supper and behind on pain meds. Once I ate a little, took the anti-nausea pill, waited a little, then took the pain pill, I crashed in my own bed for the night. Ahhhhhh! Had a quiet day today with a music therapy appt via video, naps, a bit of reading, and being in close contact with “Velcro Dog” who was so obviously completely ignored while I was gone. HA! I actually ate a decent size dinner (I haven’t had much appetite recently), am updating this page, and then will likely shower and go to bed. Isn’t my life thrillingly exciting?!
Mistaken Trigger Warning!! Palliative Care is for anyone with a chronic or a long-recovery disease or accident. Palliative Care oversees treatment for ALL side effects and symptoms, coordinates care, and helps me fully live the best I can even while in treatments. Hospice is one particular type of palliative care which is to make the patient comfortable at the end of life. Please help others understand this crucial difference! Don’t panic when I say I’m excited to finally be connected with palliative care.
While in the hospital the past few days, I had a consult with the Palliative Care team. They got rid of my mishmash of different types of pain killers and put me on ONE, more effective one. To continue working with them as part of my team, I needed a new-patient visit which can take a few weeks to schedule. But… YAY! I have an appointment with them tomorrow morning. And in the afternoon, I am having surgery to insert a “port” so the nurses won’t have to dig around in my arms to find a vein each time I need lab work or another infusion for chemotherapy.
Wednesday, May 12, 2021 — (recreated from texts) The MRI was finally done Tuesday afternoon. “No news” is that we still have no specific cause for the sudden back pain. “Good news”–the sudden back pain is NOT a metastasis, a bone fractures, or a herniated disk pressing on spinal cord. One possibility is that as chemo is causing changes in my abdomen (and hopefully in the tumors!) that something has inflamed a nerve at the L5 level. The pain/palliative (symptom control specialists) team has changed my pain meds so an extra day is needed to make sure this new regimen is working well for me. IF the various specialists agree, I “should” be going home later today. Fingers crossed!!
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!!) I will try to make a full blog post tomorrow (which will be emailed to subscribers once it is published.) 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!
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! “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!
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.
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!)
Wednesday pm, May 5, 2021 — Hubby and I are shaking our heads in bewilderment at how I’m feeling. 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 here, 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.
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.
Monday pm, May 3, 2021 – (recreated from texts) I had the final (voluntary) biopsy for the meds trial researchers today. I was surprised to feel better than I did after past biopsies…but perhaps that’s because I’m comparing this post-biopsy day with the horrid days I had on the weekend rather putting it in the context of feeling decent on this day before next chemo infusion. Rah! Rah! Tomorrow morning it’s time for the next dose of poison to drip through my veins!
Weekend, May 1 & 2, 2021 – (recreated from texts) I feel best first thing in the morning. That is both shocking and disorienting for a night owl. (Who? Who!!) A more accurate statement would be I feel a bit better in the morning. Chemo side effects have leveled me! But I do seem to have a bit of extra energy and interest first thing when I get up. I tried two ways of using that morning energy. One day I got up, did a bunch of things right away, pushed myself hard, and soon “crashed” again, laid flat by exhaustion, pain, and brain fog. Unfortunately, by doing this, I had no energy left for the rest of the day to do other activities. On the other day of the weekend, I tried using the morning burst of energy to do a small task slowly and gently, go rest, then try to complete another enjoyable activity. By pacing myself, I accomplished more than I did when I worked harder, worked faster, and overworked my energy.
Friday pm, April 30, 2021 – (recreated from texts) Did anyone happen to get the license plate number of the semi that just leveled me? I got hit by a Mack truck of chemo side effects again! (Same list of “joys” as on Wednesday’s update…)
Thursday pm, April 29, 2021 – (recreated from texts) A friend asked me if I was taking care of myself by resting today. My reply was: I took a nap then took some meds. I took a nap then slowly drank some bone broth. I took a nap and woke up feeling much better. And now I’m tired so I’m going to take another nap!
Wednesday pm, April 28, 2021 – (recreated from texts) First day of chemo infusion is finished. I felt fine the entire drive home. Supper still tasted yummy and I still had an appetite. But then, I felt like I got hit by a Mack truck. I was exhausted, nauseous, with a low fever, sore side and low back (I think I pulled a muscle getting up this morning), stuffy nose which means dry mouth is worse. I’m taking pain meds, muscle relaxer and nausea meds by the clock. I’m seriously hoping a good night’s sleep will help me feel more human in the morning.
Tuesday pm, April 27, 2021 — It’s an all new “roller coaster” starting tomorrow morning at 8:30 am–my first chemo infusion. I’m happy there are still a number of viable options for treatment, but I would sure like it if those options were not chemo! I have no clue what it will be like tomorrow at the infusion center and in the coming weeks as my body gets blasted with poisons designed to kill cancer cells (and other fast growing cells in my body). Like I said last evening, I am terrified at the same time as being confident that this is the best next step we have. I had a number of welcome distractions today–coffee with oldest son at my favorite coffee shop, lunch with dear friends who drove down from Cleveland to spend time with us and to bring me a wildly colorful mini-blanket she made for me, a brief nap, dinner cooked by daughter in the kitchen alone (she only called me a few times to ask what to do next!), and finally some shopping to get a comfy, cute chemo day outfit and a bag to take things in. No worries–Sassem the sassy sloth will definitely be with me…as well as my hubby! I will give at least a very short update tomorrow after I’m back home…
Monday pm, April 26, 2021 — I’m exhausted from a lovely weekend with all of our kids (plus 1 of 3 grandkids) home at the same time. There were tears, but there was also lots of storytelling, remembering, and laughter. Our oldest son is staying for a few more weeks to help as we need it. Our oldest daughter is with my mom right now, but will join us again soon to continue helping us.
Tomorrow I will do some last minute shopping for my “chemo bag”–things for physical and emotional comfort. I will spend more time laying down and trying to relax. Usually my appointments are on Tuesdays. But my doc wanted me to start chemo as soon as possible, so we have an appointment for first thing in the morning this Wednesday.
So many folks tell me that I’m brave… after all, look at all the adventures I’ve had in life! This cancer recurrence might well be a “health adventure” but it’s not something I ever wanted to deal with. (Being the supportive well-spouse when hubby had cancer 14 years ago was as close as I never wanted to be to cancer!) Similar to walking the grief road after one of our sons died 13 years ago, this cancer journey requires me to allow others to help me, rest more often, and lean hard on my relationship with Jesus. Time for true confessions: I. Am. Terrified. of starting chemotherapy in two days. Like many situations that trigger fear, anxiety and/or panic, my brain explains everything logically and rationally (this is the best possibility of stopping tumor growth, most other folks with cancer deal with chemo just fine, I have an excellent support system around me, there will be new people to get to know, etc. etc.) But, my body is currently in fight or flight mode–certain that chemo is a grave danger to be avoided at all costs. I’m looking forward to Wednesday evening when the first day of the first chemo infusion will be behind me!
As always, your prayers, encouragement, cheering me onward, best wishes, and other forms of support are very much needed and appreciated!
Thursday, April 22, 2021 — Our emotions are still all over the place, and we are exhausted. But there are some good things to report from today. First, I hate taking the pain meds and muscle relaxer so try to find the sweet spot between only taking them when needed but not going too long between doses so that the pain gets ahead of me. Last night, I gave in and set the alarm to wake me up twice during the night to take the different meds right on schedule. And… I had ZERO pain or discomfort when I woke up this morning! (I had apparently forgotten what it feels like to not even notice my belly…) That has lasted most of the day except for when I did some walking at the hospital to get to the coffee shop after my appointment.
Next, the surgeon who is part of my team, is referring me to palliative care. Apparently there are meds that last 24 hours or even a patch option that last 3 days. It would be fabulous to not set alarms throughout the day and night to keep track of every 6 hour meds interwoven with every 8 hour meds. Plus, the palliative team keeps an eye on depression, PT, therapy, cancer and side effect symptoms, and more. Their goal is to give me the best quality of life possible. I’m looking forward to welcoming them to my team.
Finally, the surgeon made it clear today that even with the latest tumor growth, the tumors are still “resectable” meaning surgery is still a viable option. As before, the ideal will be finding a treatment that stops additional growth (or even shrinks the tumors), THEN having abdominal surgery to “turn the clock back” to be ahead of the cancer not just blindly chasing it like we are currently doing.
Our kids will all be here for the weekend. (It will be a terrible wonderful time together!) Then the first day of outpatient chemo infusions starts next Wednesday. I will write another update next week.
(A funny story from today–in the rush of getting out the door to drive to the city I forgot to grab Sassem Sloth. The fellow in registration asked where the sloth was. The patient care person who does my vitals asked where the sloth was. Even the surgeon asked. Apparently I wasn’t the only one who missed having her with me today!!)
Wednesday, April 21, 2021 — First, a big thank you to everyone who responded in the comments on my blog post, on facebook, or by text or email. Your stories of alternate explanations about the delay in posting the report from my CT scan were FABULOUS! (For those who missed it, you can read HERE about my attempts to laugh instead of worry.)
We finally got the results of the abdominal CT scan while in the waiting room at my oncologist visit yesterday. We have personally contacted family and a few friends. I really really don’t want to be the cause of heartbreak or sadness for any of you… I crawled under my covers and ignored the world for most of the past 24 hours, but I’ve promised to keep you updated. Sometimes there is no way to sugar-coat reality… (So, I’m finally writing this, and then I’m crawling back under the covers after I eat more comfort food. Don’t worry, I’m working on self-care and so is hubby.)
Yep, we got bad news. The scan showed that over the past 6 weeks the tumors have aggressively grown larger. We were in the exam room for a few hours as a parade of people came to talk with us, let us cry, and listen to us. The oncology Fellow came in to see what we knew, discuss the ramifications of the bad news, and to let us know additional resources that might be helpful. The meds trial coordinator came in to discharge me from the clinical study at this point since it obviously didn’t work for me. Then my oncologist came in with a med student and the Fellow. He carefully explained the various treatment options, answered the few questions we had, and worked with us to decide on the next steps. Once we made our decision, the pharmacist came in and talked us through this chemo plan in great detail. I will start 2 rounds of chemo next week, followed by another CT scan at the end of the 6 weeks.
Obviously, this was NOT what ANY of us wanted to hear. But we definitely chose the right doctor for me. Dr. Chen is a careful, caring listener, explains options in the detail we desire, and pays attention to many things we wouldn’t think of asking about. Plus, we joke together–about my wild hair and mismatching socks, and about my Sassy Sloth companion. Yesterday, he even asked what Sassy thought about our plans! He remains positive that if we find a medication that will stop tumor growth or maybe even shrink the tumors, I might live for many more years.
The biggest question most people have asked when we share this news is to wonder how we are feeling, and how we are doing. Rather than write a novel listing every emotion in the dictionary, here’s a visual way to summarize where we currently are emotionally. When we stumble off the current emotional roller coaster, I’ll be back to post another update with more information and to finish a blog post I have been working on.
Saturday, April 17, 2021 — Not much news around here. I stayed home with the dog while the rest of the family went gallivanting other places. Long car rides (and bumpy train track crossings and potholes) are very uncomfortable right now. I’ve been fighting anxiety all day–finding myself “catastrophizing” reasons why the radiologist did not post the abdominal CT scan report at the same time as he posted the chest CT results. I’ve listened to worship music, tried distracting myself with puzzles or reading, ate some comfort food, and kept using the storytelling exercises I’ve worked on with my music therapist. YOU CAN HELP ME!! Please read my latest blog post HERE, then add your own worst possible story ending in the comments. C’mon friends–make me laugh!
Friday pm, April 16, 2021 — It’s a wild and crazy Friday night around here! Ummm, well, maybe not… At 9:15 pm, I’m finally waking up after laying down for a nap when we got home from the CT Scan around 4:00 and I’m not completely coherent yet…I’ve had many of these scans over the past 2.5 years. This was the first time the contrast via IV felt like it was hot/burning my mouth and throat. And it was the first time I had a stomach ache afterwards. But it’s done! YAY! (Unfortunately, results/scan report by the radiologist likely won’t be posted until Monday or later.)
Everything went smoothly–IV line was put in on first try, I managed to down the bottle of water with contrast solution in 45 min (rather than an hour) so got the scan done earlier than scheduled. I’ve done these enough times that I know how to make it easier on myself: make sure sleeves of my shirt are loose enough to easily push up for getting poked with an IV line, make sure clothes including bra have NO metal on it (then I don’t have to change into a hospital gown) and shoes are easily slip on/slip off, don’t forget to use the bathroom before being taken to have the test done, and for the next 24 hours drink as much water as possible to help flush the contrast dye from my body. And I know the routine once I’m laying on the narrow bed that moves in and out of the huge circle ring of the CT Machine: lay on my back with cushion under my knees, put arms above my head, listen for the machine voice to tell me “now hold your breath” followed by “you can breathe” right when I’m about to panic and breathe without permission, contrast is put through the IV line (I can feel it move through my body within a few seconds!), the bed moves in and out of the short tunnel as the machine scans my lungs and my abdomen, take out IV line, get handed a bottle of water to start flushing the contrast, walk to the front, go to the bathroom one more time (it’s a long drive home!), startle my chauffeur/hubby when I interrupt his napping in the car. And now comes the hardest part–WAITING for Results!
Thursday, April 15, 2021 — Are you tired of no-news updates? Yeah, me too… Walking out the Cancer Journey/Health Adventure this time around requires more patience that I have. Unlike the past two times of tumor growth when the treatment was abdominal surgery with clear expectations of when I could resume “normal” life; this time, we still have no clear timelines for much of anything (including when pain meds will no longer be needed…). I want to have exciting updates with fabulous news that the treatment is working well and that I have many many more years to live. Instead, each step forward seems to take forever. We slog along week after week and keep saying, “we will know more in a few weeks.” Arggggh!
This time, however, I think it really should be true… I have a CT scan on Friday afternoon. We will get the scan report by sometime next week (or my doc will give us an informal report at my visit next Tuesday). And we expect the results to give us options of what treatment to continue or to switch to. If tumors have grown, the trial med is not working so we probably switch to chemo. If tumors have not grown in the 6 weeks since the last scan, the trial med is working at least somewhat so we will likely stick with it through the end of the study and continue long term after that. And if the tumors have shrunk, we celebrate that the trial med is definitely working, we stay on this course, and possibly schedule surgery to remove the tumors now that we found an effective med to stop future growth.
I’m really not worried about the scan itself. But please pray in whatever way you choose that we are wrapped in God’s peace while we wait and that the results are positive when we finally get them!
Wednesday, April 14, 2021 — I’m curious… do you consider yourself to be flexible and open to sudden changes? For most of my life, I have been proud to describe myself that way.
Then, last fall, I completely fell apart emotionally. For the first time ever, I had frequent anxiety attacks (NOT simply worrying or fretting) and an occasional panic attack. (Yep, those “delightful” times you think you must be dying!) With a combination of therapy, meds, and lots of prayer and encouragement from friends & a few family members, I was finally close to feeling like myself again by late January. And then… sigh… with the news that cancer is growing again, I slid backwards. In general, I am still able to use the coping skills I learned last fall to stay somewhat level emotionally. The biggest area that I notice is very different from my usual self, is that I start to melt down or panic if plans change last minute or if unexpected things happen.
Fast forward to today. I got teary when I couldn’t find anything I wanted to eat for lunch. I got teary when I had to lay down for awhile. I got teary after a very successful meeting with youngest daughter’s school support team. I got teary when hubby started packing to get away for a few days (which I had suggested yesterday!) And then I was a teary, snotty, sniffling mess after an unexpected call to set up an appointment late next week with the oncology surgeon to discuss options after we get the results of the CT Scan being done this Friday. Really, this should be good news–my doc apparently thinks surgery may possibly be a viable treatment soon. But, unexpected, unexplained, open ended, CHANGE caused me to come completely undone! Poor hubby… perhaps he needs to be awarded a medal for his patience and gentleness! At least he gets a few days away while eldest daughter is here to help us if needed.
Monday, April 11, 2021 — Hmmm… this is very strange. Apparently when I think of updates to post for all of you to read, those updates don’t automatically transfer from my brain to the website?! Aren’t we supposed to be living with flying cars, transporters, and mind-meld computers by now? Hahaha
Okay, one reason I haven’t posted is because there is nothing new or particularly interesting to report. Pain is still pain, meds are still meds, the necessity of balancing active times and rest times is still the same. The only change over the weekend has been that my brain has apparently joined Sunshine Susie on vacation somewhere sunny and warm! I’m not currently remembering details very well, can’t concentrate on what I try to read, and have messed up some scheduled activities when I was convinced it was a different day than it really was. Oops! At first, this worried me. I’m not on chemo, so this can’t be explained as “chemo brain.” Eventually, I remembered that this fogginess is “normal” when someone is grieving or processing any other strong trauma or emotion. The brain shuts down what it deems to be non-essential tasks in order to help inner me deal with emotional processing and healing. (Whew! I won’t be brainless forever! YAY!) Now, if I can just remember that I have to get a fasting blood draw tomorrow, and a CT scan on Friday afternoon…
Thursday, April 8, 2021 — Check out my latest blog post to learn about Cancerland, an unamusement park of crazy rides experienced by cancer patients. (You can read it HERE.) I want to clarify yesterday’s mini-update about my appointment with the oncology doc on Tuesday. Hubby and I have made it clear to my health team that we prefer to hear blunt realism–both the worst case and the best case possibilities. When we are given full information of what might be going on based on the doc’s training and previous experiences, we feel that we are better able to make decisions. And we won’t be blind-sided if the best-case doesn’t come true. We know many other cancer patients prefer to hear positives only. That’s perfectly fine for them, but we have different needs. When we have been told the worst case, then we can set it aside and not wonder and worry about all of the negative what-ifs. In other words, based on the unamusement park I just described, we prefer the roller coaster rather than the tower ride!
Wednesday pm, April 7, 2021 — I’m learning how to handle life right now, choosing which 1-2 things I will use more energy to do and which are worth spending the rest of the day (or maybe even the following day as well) resting and relaxing. This has been a weird in-between day. Yesterday, my health care team honored my desire to hear both worst case and best case scenarios. Yep, this renewed pain MIGHT be out of control tumor growth. OR it might be related to cancer cells dying and tumors shrinking. I will have another CT scan on the 16th to see what’s really going on. (Doc laughed when I told him I thought he was superman and asked him to simply use his X-ray vision to give me an answer right away!) That worst case feels really weird when put next to tomorrow’s memory of the day our son James died 14 years ago. I’m working on a blog post describing the many ups and downs and twists and turns of a trip through Cancerland. I might even get it posted before bed tonight…
Tuesday, April 6, 2021 at O’Dark O’Clock — leaving soon to drive to the cancer center again. I hate getting up in the dark…but on days I am fasting before the blood draw, it’s easier to manage. Today is a physical/check-up to determine how things are going so far. Our biggest question is how do we know this is working?? What would tell us it’s time to get out of the study and try something else? It made sense to us that having a week of almost no pain was a very good sign. But… what does it mean when pain came back last week, in a new location (near where smaller tumors are hiding)? I’ll let you know later today what the doctor says…
Sunday pm, April 4, 2021 — Those of you who know me, would likely say I can always find the silver lining in the storm clouds, I can find a way to make life fun, and I sometimes even drive others crazy with my happy-happy outlook on life. Sorry… That gal has apparently disappeared for awhile. (Perhaps she needed a getaway. So those of you who live in the mountains or live near a beach, please send my Sunshine Susie back home! I need her rosy outlook!) Yep, it’s been another teary day. Lots of things to grumble about. Lots of things I’m sick of facing. Too many what-ifs for my mind to chase in circles. Hubby deserves a big shout-out for comforting me and trying to find things I can enjoy even when I feel horrid. And friends and family are sending notes via snail mail and electronically. Sorry to those who have texted or called and I haven’t responded. Please know every contact you make really does keep me going! I’m heading to bed soon… I’m taking solace in the fact that every morning starts a brand new day with new possibilities. I’m praying it’s a good one so I don’t keep whining at all of you!
Saturday, April 3, 2021 — It’s been a rough couple of days. I continue to have high levels of pain in the new location (with the smaller tumors at the top of my abdomen instead of near the bigger tumor hiding deep in the pelvis). I’ve gone fully back on the pain med and the muscle relaxer–counting the minutes til I can take the next dose. Last night I even set an alarm to wake me up at 2am to make sure pain didn’t get ahead of me. I’m most comfortable laying down. At least I have a high-ceilinged, bright and cheery bedroom to lounge about!
All of this makes me grumpy. (I don’t WANT to take meds! I don’t WANT to rest! I just DON’T WANT TO!!) I was enjoying a week or so of feeling pretty good! At times, fear of the “what-ifs” gets overwhelming. Those are moments when the support, encouragement and prayers/good wishes from friends are incredibly helpful to remind me to ignore the hissing whispers of the evil one and focus on Jesus instead. Yesterday, hubby convinced me to contact my doctor’s office about the changes. I’m supposed to keep taking pain meds and resting as needed. I already have an appointment next Tuesday when we will discuss this further. And the doc let me know that the increased pain might be caused by the treatment med effectively fighting the tumors.
So… if you think of me this weekend, just imagine me laying in bed with daughter’s dog curled up beside me, silently cheering on the hopefully magic med as it brings the cancer cells under control!
Thursday, April 1, 2021 — Had a biopsy at lunch time… grumpy because I had to fast before the procedure (can you say “hangry?!”) This biopsy was for research purposes only (for the med trial I am participating in). Rather than being done under twilight sleep and being moved in and out of a CT machine to monitor the needle reaching the largest tumor located deep in the pelvis, this time they were able to gather tissue from one of the smaller tumors closer to the surface and in my upper abdomen. An Ultrasound was used to choose the best path and to make sure the long needle did not nick anything it shouldn’t touch. And it was done with mild sedation plus a local shot of lidocaine. I was very happy to get some lunch and finally get home again in late afternoon. No more visits to the cancer center until next week. Whew!
Unfortunately, I’ve got a fair bit of pain tonight. For some odd reason, my body and the tumor which was biopsied are rebelling at such mistreatment and are cramping up! HA! Good thing tomorrow can be a rest and relax day… (As always, THANK YOU for your encouragement and your support!)
Tuesday, March 30, 2021 — Too much sitting makes me ache, and aching makes me grumpy! Today was another early morning trip to the clinical trial unit at the hospital for more blood draws for research purposes. This time they “only” took 5 vials over 2 hours. (Whew! The nurses in this area are fabulous! So far, each of them have gotten a line into my vein on the first stick — rather than 2-3 pokes which is more common for me…) When the trial coordinator saw my initial lab results she commented they were the best labs she had seen in quite awhile (among all her patients). YAY for being healthy… even if the tumors do cause aching at times. Oldest daughter drove me back to my mom’s house and I spent time with my mom today before getting a ride back home. (Hmmm… does a mom EVER stop being called on to drive the mom-taxi?!) Spending a few hours laying down this afternoon was BORING… but in combination with a muscle relaxer pill, I’m finally feeling pretty good again this evening. Tomorrow I hope to do more art journaling. Thursday will be another biopsy–this time for research purposes.
Monday, March 29, 2021 — Life has continued to be quiet. Went for a drive in the country yesterday with hubby. We enjoy looking at the house and barn styles, noticing animals wild and domesticated, and savoring signs of spring. For now, at least, I have discomfort in my belly (almost like feeling I ate way too much) but I’m only feeling full pain if I have been too active without rest breaks. This means I’m only taking pain pills or muscle relaxers a few times a day, rather than every 4-6 hrs round the clock. Whew!
Today I pushed it a bit–trying to see how much I can handle. So I drove myself and did a small grocery shopping trip. By the time I got back home and unloaded the groceries, I had to take a pain pill and lay down for the afternoon. Hubby just laughed at my stubbornness! But to me it was worth it to feel at least a small level of independence! Gives me hope for continued improvement! As I said to a friend today, I’m very good at many things…but patience is not one of them!
This week is busy with health appointments. Tomorrow oldest daughter will drive me to the cancer center early in the morning for weekly blood draw plus extra tubes of blood for the research study. (Just in and out, no long day this time.) Then on Thursday I will have another biopsy–this one specifically for the researchers to use. I will keep you updated on how things go…
Saturday March 27, 2021 — It has been another couple of quiet days. I’m generally having less pain and taking pain meds and muscle relaxer only a few times per day. I’m finding a rhythm which works well (at least for now!) I’m spending the mornings being more active, or at least sitting upright in a chair, talking with others, doing art journaling, working on this blog, going out for coffee, and more. By the time I fix myself something for lunch, my abdomen is starting to ache again and I’m physically fatigued. Then, much as this busy extrovert hates to slow down and rest, I head to the couch or back to my bed to listen to music, read a book, or nap. Some days I have enough energy to fix supper, other nights we have carry-out or someone else cooks. I’m up again for awhile each evening, then I take meds and muscle relaxer and head to bed for the night.
Some days this quieter, slower schedule drives me crazy! Other days I remember the pain I was in just a few weeks ago and I’m grateful that I’ve found a daily pattern that balances rest and busy-ness. This morning hubby and youngest daughter left for an overnight away. After lunch my two older daughters left–one for home, one back to my mom’s in the city. So it has been an extra quiet day, spent in the company of youngest daughter’s dog…
Friday, March 26, 2021 — It has been a quiet few days. Our middle daughter has been here for a few weeks to help with things I don’t have energy for right now. She leaves tomorrow morning to head back home. (Waaaah! I will miss her!) Our eldest daughter and her hubby came to Ohio to spend time with family for a few weeks. It has been extra fun having all three of my daughters together at the same time. On the other hand, listening to the older ones talking about life and marriage and some-day families has triggered a grief storm for me. I want to meet ALL of my eventual grandkids. I want to see my kids as parents and watch each grandchild grow to adulthood. It would be easier in the short term to try to stuff down these strong emotions and/or to cling to the positive hopes of miraculous healing that lets me live for decades longer… but I learned long ago that grief is easier to bear if I allow the tears and acknowledge the (potential or real) loss. This is often contrary to what our culture expects… but it really doesn’t help when friends and family insist on a positive-only future. So I’ve spent mornings with my girls, talking about everything under the sun. And then I’ve taken an afternoon nap and grieving time. Some days the best way to move forward is by stopping to rest and honor what might be before jumping back into whatever is going on today!
The GOOD NEWS is that abdominal pain continues to diminish. I’m taking fewer and fewer pain pills and muscle relaxer pills. This implies the medication is working to slow/shrink tumor growth. Plus the wonderful thing about this very targeted med is that there are no side effects! No nausea /vomiting, no hair loss, no mouth sores (beyond dry-mouth), no immune system compromise. YAY!!
Wednesday, March 24, 2021 — Yesterday was a very long day. We got to the Cancer Center at o’dark o’clock and spent the entire day there, having blood draws to gather data for the research team of the clinical medication trial I am participating in. I had already planned in my schedule that today is a day to relax, prop my feet up, snack, nap, and update this blog (go check out the new blog post about what to call me and/or click on the caption above to learn more about my cancer companion).
I was disappointed that we got no concrete answers from my doc about whether or not he thought the med was effective for me. We had hoped he might be willing to order another scan to see what changes there have been in tumor size. Instead, we will continue on the current course because there have been a number of small improvements in the past two weeks since I started the targeted medicine. Only if I have negative changes will we do a CT scan earlier than the one already scheduled for the end of the 8 week trial.
Tuesday, March 23, 2021 — WAAAAHHHH! I accidentally deleted this mini-update when I was trying to move it to this archive! Here’s a recap from memory… The nurse got a needle/line in an arm vein on the first try. YAY! (That’s unusual for me. More often I feel like a human pin cushion when they take multiple tries to accomplish this.) It was mostly a boring day in between blood draws. I really don’t have much energy or ability to focus on any of the things I bring along to entertain myself and I’m generally not in the mood to watch brainless entertainment on TV. It’s amazing how tiring it is to do “nothing” all day long!
Monday p.m., March 22, 2021 — Tomorrow is already two weeks since I took my first pills of this trial medicine. Just like on the first day, we will spend the day at the cancer hospital while they take multiple blood draws. Two pain points: poking the veins in my arms to put in a line for the rest of the day often takes more than one needle stick. (blergh!) AND the first draw is after I have fasted all night which means I will be short on caffeine and patience until after that blood draw when I can finally have coffee and breakfast. (gasp! pray for my hubby y’all. Folks really do NOT want to be around me before I’ve had my morning caffeine!) One other note about the day: we are very curious what my doc will say about the effectiveness of this medicine so far. Originally, he said within 2-3 weeks I would be feeling significantly better. That was hard for me to believe but maybe, just maybe, it’s happening. I’m still having some pain and discomfort (from tumors hogging the space and pushing my organs around) BUT some days my abdomen is only achy (although I still need the pain meds). THANKS so much for your encouragement, prayers, best wishes, and other support!
Monday a.m., March 22, 2021 — Tip # 379 for folks living with a chronic disease: keep a daily log of how you are feeling physically and emotionally. I am a medication trial participant for my current cancer treatment. There are many extra things I have to do as part of this study (weekly blood draws, biopsies, an extra CT scan, and more). One requirement feels like a hassle, but I discovered this weekend it is actually of great benefit to ME, not just to the study team. I have a log sheet to record the time I take each of the twice daily sets of pills. Plus there is space to add comments about any symptoms I am having and/or other medications I’m taking. I’ve been frustrated the past few days because it feels like I’m always in pain, always having to lie down, always limited in what my body will let me do. BUT, when I look back over past entries on the log sheet, I see that the pain (from greedy tumors growing and trying to push my organs out of the way) is actually lessening day after day. I’m taking less pain pills and I’m more likely to be logging things as “achy” or “discomfort” rather than PAIN. Whew! That’s encouraging!
Friday March 19, 2021 — For now, I need to accept that if I want to have energy (and less pain) to do things, I need to spend plenty of time laying down in between activities. And even though I hate taking pain meds/muscle relaxers, I can actually take fewer pills if I make sure to use them BEFORE the pain gets bad. I learned this fall that when everything feels out of my control, I melt down into crippling anxiety and panic attacks (a first for me). So with the physical limitations right now, I’m trying to remind myself that I am CHOOSING to balance rest and activity and I am CHOOSING to listen to what my body needs. (I guess it IS possible for “an old dog to learn new tricks” !!)
Wednesday March 17, 2021 — It’s been a roller coaster emotionally the past few days. How in the world do I manage to find balance?! On Sunday (3/14) I had discomfort where the tumors are pressing on organs but no pain. On Monday and Tuesday, I felt so good that I only took one muscle relaxer in the evening to hopefully prevent aching from turning into pain again. Last week, my oncologist said that within the first few weeks I would be feeling good with few symptoms IF the trial med is effective. For those few days, while I was feeling good, I wondered if maybe, just maybe, this was evidence that the trial medication is already starting to work! (Eek! Don’t get your hopes up… but also, don’t be a pessimist… ) And then, during the night last night, pain returned, but in a different area and with spasms not just pressure. I’ve laid down most of the day today and have taken pain meds and muscle relaxer on a strict schedule. (RATS! Does this mean the drug isn’t working? Does this mean we will waste time with this trial and then have to try something else then something else? Does this mean my time is running out? Blergh! Fear can send me to horrible story endings!) By tonight, I’m feeling pretty good again–both physically and emotionally. THANKS for your continued prayers, support, encouragement and comments!
Sunday March 14, 2021 — The past few days have mostly been resting. The new pain meds are making a huge difference: YAY! It’s shocking how quickly we forget what “pain-free” means and we just accept the “discomfort” or “aching.” You know me, I hate feeling useless and unable to DO the things I want. I’m gradually, oh-so-slowly beginning to accept that some seasons are simply for BEing, and that rest is the thing I most need to do.
Wednesday March 10, 2021 12:20 pm It’s a rest and recover day. Pain meds are less and less effective, so I will contact doc’s office today to see what other options are available. I have published the first blog post about my cancer journey. You can find it HERE.
Tuesday March 9, 2021 8:40 pm — This has been a VEEERRRYYY long day! We left home this morning at 6:15 am and just got back home at 8:30 pm (which included a stop for dinner). This was the first day of the Meds Trial I am in so I have taken my first dose of the medicine, had 18 vials of blood taken for lab work (spread over 10 hours), and came home with a 28 day supply of pills to take morning and night. Hubby and I are both exhausted–physically, emotionally, and mentally. I will write an actual blog post tomorrow to walk you through this first day–including photos with my Lego Tiny-Me! Check back around lunch time or later…
Monday March 8, 2021 8:20 pm — Biopsy completed. Because of need for being added to the schedule more quickly than usual (study-treatment can’t start until biopsy is finished), this was done with twilight sleep rather than general anesthetic like I had been told would happen. I’m still a bit groggy–no idea if this is just exhaustion from getting up very early or if my body doesn’t get rid of twilight meds as quickly as others do. The large tumor is deep in the pelvis between the bladder and the colon. That makes it extra tough to find a clear path for the needle used to aspirate tissue. Turns out I had to lay fully on my stomach for the procedure and they went through my very low back. Now my belly is not just achy but VERY sore to touch. I assume that will feel better soon.
I got a phone call late in the day that we have jumped through all the hoops, completed all needed tests and paperwork, and I’m officially entered on the roster for this meds study. Woohoo! Looking forward to getting started tomorrow…FINALLY!
Sunday March 7, 2021 9:00 pm — I am having increasing pain as the tumors press on internal organs, including my bladder. I am currently taking pain meds and spending much of my time laying down which lessens the pain somewhat. *I was accepted into a medication trial for a very targeted oral treatment. *Monday March 8th lunchtime, I will have a needle biopsy under general anesthetic to verify that this round of cancer still has the dna mutation required for this study. *Tuesday March 9th, I will be at the cancer center all day long, to take my first dose of medication with follow-up study blood draws and lab tests. Then I will be sent home with a week of medication to take on my own. *I appreciate all concern, support, prayers, good wishes, and encouragement!
Have you read a history of my two and a half year on this Cancer Journey? If not, you can read it HERE.
The Big Epic 