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.
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.