Choose to Live Your Life–one micro adventure at a time

When life gets challenging, it adds to the confusion when we need to decide whether it is time to rest and float or time to “seize the day” and find a micro adventure to affirm life. Since recurrence of cancer this winter, I have spent many hours and days just resting. Some days that was all I could manage. Other days it was what felt like what I needed to “do” was to just “be.” But there have been a few moments when I was called to DO something bigger, something that was an adventure, something that affirmed I am still living, not actively dying (yet).

A few weeks before the cancer diagnosis, my 83 yr old mom and I went downhill skiing for a day here in Ohio. It had been a few years for her, and seven years since I had strapped sticks to my feet and hit the micro-slopes of Ohio. Ahhh, wind in my hair, “dancing” down the hill (please don’t tell me how awkward I look…it FEELS like dancing!), laughing at ourselves and having fun in the sun. It was worth going back another time or two after that first outing.

Then came the shocking diagnosis of return of cancer, very aggressive this time. Our first reaction when we saw the test results but before talking with the doctor, was to find ways to celebrate LIVING! I splurged and ordered two pairs of snowshoes which gave us many hours of pleasure having access to snowy trails inside the woods, not merely walking paths around the perimeter of snowy places. And hubby took a quick trip to Florida to hang out with kids and grandkids. Ahhh, breathing room when our breath was snatched away with fear.

Is it a micro adventure to find a new marker of identity? I’m going to claim it as so! I’ve had a quirky hair cut and bright teal stripe for quite awhile. But… then my hair started falling out. So, we made a trip to the woods and cut it quite short. Eventually, it turned to a very short fuzz with no color. Fortunately, just as I was losing my trademark colors, I found a travel companion. SASSEM (Slow And Steady, Supporting and Encouraging Me) Sloth goes with me to all appointments now. He has become my new trademark. Some of the staff makes sure to talk with him when they enter the room, and they love a chance to hold him! Whew! I may not be the gal with the teal hair anymore…but I AM the girl with the cute sloth!

April 8, 2008 is the date one of our teen sons died unexpectedly. We usually find something life affirming to do on that day. This year, nothing seemed right, especially in the middle of my own cancer treatment. Late in the day, this terrified of heights and not so thrilled with storms gal decided to climb the local observation tower in a nearby park, yes, all 140 feet and 224 see through metal steps to the platform! Whew! That was a stretch and an adrenaline rush!

Family and Friends gain importance when your life is in crisis! We’ve made a point to meet with friends when I’m feeling up to it. And it was wonderful to have all of our kids gathered at the same time in mid-April before I switched to chemotherapy treatments. There was lots of talking, laughing, crying, and loving as we spent a few days together, considering what my diagnosis might mean for our family. Plus, grandkids were able to visit over a number of weeks in June. Always extra special time, even when it is draining! Time with others who are precious to us continues to be important, using phone and face time and social media when we are scattered too far apart to be physically together regularly.

I spent a few days in the hospital in May, with unexplained stabbing pain in my back. Not a pleasant one, but I’m also calling this a micro adventure. It was unexpected, it took flexibility to adjust, and by the end of the testing and referral to palliative care for ongoing pain management, it was actually life affirming. SASSEM sloth was, of course, with me. And daughter sent him a light saber to protect me during long nights!

This summer we are living in two locations: our house in small town Mt. Vernon and our small play farm near Marysville OH. After years of having renters at the farm, it is finally back in our possession. It is a delight to see how many trees have grown and how park-like the place now looks. It is a gift to be able to walk out the door straight into nature with limited traffic and few neighbors. I’m trying to get outside daily for all of the benefits I have written about before. (See HERE and HERE.) And I’m delighting in the country sunsets unimpeded by houses or by many electric lines.

The latest round of scans were high stakes. Either this chemotherapy regimen was effectively shrinking the tumors (meaning I’m finally ready for surgery 5 months after discovering the cancer had returned) or this type of chemo was useless for me and it was time to try something more toxic. Either way, we scheduled a few days to get away together, needing a micro adventure or two to draw us closer together. We would need time to adjust to limited mortality or time to celebrate success! We are happy to announce that I’m having surgery soon to lessen the tumor load and reset the clock on prognosis—hopefully to many more years! (We visited an estate gardens, had some good meals, and wandered a steam-boat town along the Ohio River, including an overnight in a historic hotel.)

Throughout the spring and summer, there have been many days where I have had very little energy to do anything. When the weather is nice, we often choose to take a “top-down-drive” after dinner. The convertible that felt like such a luxury to begin with, now feels like a treat and a sanity saver as we wander country roads with wind in our hair (or not! HAHA)

A few days ago, I finally pushed past my fears of not being strong enough and got back on my kayak here on our little farm pond. It was fabulous to float with little bits of paddling, in the golden light of early evening. Daughter’s dog was confused as to what I was doing, and our resident red-slider turtle came to check me out as well. This was a good metaphor to remind me that during times of chaos and challenges it is important to balance rest time with choosing to live large one micro adventure at a time!

As always, thanks for supporting and encouraging me on this health adventure! I would love to hear about any micro adventures you have tried recently—just drop a comment below!

A Tale of Two Story-Tellers

We recently spent an overnight in SE Ohio as a mini getaway. We took guided tours of two different museum settings and had two very different experiences related to being someone with a chronic illness. I started writing about this in the day-by-day post but realized it really deserves its own post to more fully explore what happened and how it made me feel.

First, both guides were retired men with an obvious love of history. Both were excellent story-tellers. I’m pretty certain that both were volunteers, doing this work because they love to share their own interests with others. My physical challenges of getting easily tired are not invisible. I have a big bald head right now, and I know I start looking exhausted as I get more and more tired. These two guides reacted in very different ways…

On Sunday afternoon, we stopped at the County History Museum in the tiny town of Beverley, OH. The oldest log cabin in Ohio is right beside a home that is stuffed to exploding with every imaginable paper, artifact, piece of furniture, and piece of history from the surrounding area. (There’s even a gravestone that was found in an area barn with a replacement already in the cemetery. But that’s a story for some other time…) We found it intriguing that many of the pieces of antique furniture we have owned over the years were in this museum! Apparently, we have very good taste…or at least similar taste to the common families of SE Ohio in the 1800s!

Guide A had a story about every item in the museum. (Yes, I really think he had THAT many stories he could have told us!) With every room packed with things, there were very few places to sit or even to lean against a wall as I got more and more tired of standing. At one point, hubby needed to check on our car. I made a bee-line for a modern chair and plopped down to rest. I commented something to the guide about being in the middle of chemo treatments and having no stamina left. He paused a moment, then went right on with whatever he was saying, as if I had said nothing at all. Throughout the rest of the tour, he seemed oblivious to my growing need to find places to sit and rest a bit. In many ways, this made me feel even worse than physically tired.

On Monday afternoon, we took a walking tour of the Lafeyette, a stern-wheel paddle boat which ran for many decades on the Ohio River hauling cargo between Pittsburgh and Marietta. Our guide, Captain B, was a retired ferry captain from Florida. I was still somewhat tired from a long day on Sunday so was quick to find a place to sit whenever possible. Fortunately, there were plenty of sturdy metal fittings and benches throughout the ship. I never mentioned cancer treatments or fatigue, but Capt. B quickly caught on to what I needed. As we entered each new room, he would point out a good seat for me and invite the others to sit as well. At one point, he made it clear that we needed to choose between climbing down a ladder or going back down the stairs we had used, then coming around a corner to join the others. I felt very supported. And when I wasn’t on high alert about guarding my strength, I could better pay attention to and enjoy the many stories that Capt. B had to share with all of us.

I don’t feel a need to write out a moral of the story. I recognize I am an extrovert and potentially what made me feel most welcomed would be upsetting for someone else. Obviously, sensitivity is needed in how we interact with others. I will always appreciate anyone who tries to make life a bit easier for those who have obvious challenges in life.

Day by Day through Cycle 4 of Chemotherapy

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!

 

Adrift in Time

It currently feels like I’m adrift in time, with little clear progress or known positive change. On June 24th, I added a page to my art journal about this, commenting “I’m struggling to blog or art journal with little focus–just waiting for news, for decisions–and realized this “drifting” should also be documented.” After looking at the finished page , a friend asked if I thought this was unique to my cancer journey or if it also applies to folks as they age or as they deal with chronic illness. Seems to me it applies to anyone who is adjusting to a new stage of life. But I’m curious–drop a line in the comments and let me know if you have ever felt adrift!

Have you ever felt like you were just drifting through life, things happening as they happened, no control over your future? Most often this type of feeling occurs during transitions–when one thing has finished but the next has not yet begun. Seems to me that positive, exciting times of change don’t feel like drifting because we are so excited to move forward, so full of hope for future possibilities. It becomes much harder when the future is uncertain or not yet clear.

Right now, on my health adventure, it feels like forward progress has stalled. It reminds me of floating on my kayak at sunset, no clear landing site in mind, simply letting myself drift through the water and the changing light. In a similar way, I’m currently adrift in time. I’m continuing to take the same pain and anti-nausea meds. I’m continuing to complete 3-week cycles of chemotherapy. I’m continuing to follow a pattern of feeling blah, feeling horrible, feeling okay, feeling good before starting the next cycle all over again.

It’s increasingly hard to have an answer to the questions of how I’m doing. Ummm… the same? Or maybe one of these: We hope treatments are continuing to shrink tumors. I’m bored. I just wanna whine at lack of clear progress. I’m feeling okay or I’m feeling horrid. I’m stuck drifting forever. What does one answer when it’s the same old, same old, day after day after day??

Since there are no zippers or windows to my abdomen, the only way we can monitor the effectiveness of treatment against these cancerous tumors is to have CT scans every 6 weeks. That’s effective. BUT… it leaves me feeling like we are drifting between scans, uncertain of the “what’s next.” IF the med is working, we will do this. IF the meds are not working, we might try that… or the other thing. As a list-maker and calendar scribbler, I prefer to plan, and set goals, and KNOW what’s going to happen! But that’s apparently not the path I’m currently floating on.

Sigh! Wanna come drift with me awhile? It’s beautiful sometimes…

Mostly Good Days

I add a mini-update every few days to the landing page to access health-adventures on my website. Every few weeks, I gather the recent updates and turn them into an archive post. If you are a subscriber to my website, you will receive an email each time I post one of these summaries and each time I post other stories or information from along this journey.

Each “cycle” of Chemotherapy consists of: Week 1-Infusion of Med#1, Week 2-Infusions of Med#1 & Med#2, Week 3-rest with NO chemo. We are beginning to see a pattern to how my body responds to the infusions of poison. I’m exhausted when I get home on Tuesdays. There tends to be a bad crash later that night. Wednesdays and Thursdays are down days—emotionally and physically. By the weekend, I’m slowly feeling better and better. And Mondays are mostly good days! And then… it’s Tuesday again and time for more “torture.” (It sure was good news that this chemotherapy regimen is slowing down cancer growth. As we continue on this path, we hope for actual shrinkage of the tumors.)

Here is a month’s worth of mini-updates. And looking back, they were mostly good days, or at least take a nap days. And many were get-outside for at least a few moments days!

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!

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, trying 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! (this day at least remained a mostly good day…)

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 cannot control how my body reacts to this poison and thus cannot 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.

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 I’ll 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 did feel well enough to go get some Indian food at a local restaurant.

SASSEM helps celebrate the combined birthdays for me and son James. He was born in my 30th birthday but died when he was 15. So each year I celebrate being 45 in James years!

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…)

Saturday pm, June 5, 2021 — I am very happy to let you know that today was a mostly 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, not exhausted. Win!

Hopefully, tomorrow is another mostly good day as well!

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 tomorrow afternoon that we will hear this current chemo mix is effectively killing cancer cells and I can stay on this plan 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!

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 for 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. 

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!

And On & On It Goes – hopefully with many more mostly good days to balance out the horrible, terrible, no good, very bad days! Bright and early tomorrow morning (Tuesday) we will be at the cancer center again for my weekly appointment, week 2 so infusions of both meds.

Since I am an active cancer patient yet again, I decided to add a “health adventures” tab to my website. You can follow my current cancer journey in a couple of ways:

• click HERE to see frequent mini updates plus links to the pages below.
• click HERE to see a compilation of all the mini updates archived in one place: and
• click HERE to see photos and read blog stories about the ups and downs of this stressful journey plus posts from past health challenges.
• Feel free to poke around the site and check out other Big Epic Adventures I have documented in the past—backpacking and other outdoor fun, becoming a certified Nature and Forest Guide, trip reports, and other daily activities.

________________________

If you hate to miss the latest reports from my Cancer Journey, you can bookmark this intro page to read frequent mini-updates OR you can scroll to the bottom of any page and sign up to receive an email notification whenever I make a new full-length blog post (not just an update to the intro page) which will include stories, photos, explanations, and a weekly summary of mini updates.

(THANK YOU for following with me on this cancer journey! I appreciate every comment, encouragement, prayer, good wishes, little gifties and other types of support. I can’t imagine doing this alone…)

More Than I Ever Wanted to Know About “Chemo-Ports”

I enjoy learning new things and exploring how things work. But I prefer to do that about my own interests and at my own pace. The past few years, we learned more than we ever wanted to know about how surgery is used to treat cancer by removing tumors and how CT Scans are used to monitor any future growth. We felt good that we were becoming familiar with the routines that I would likely face every few years when the cancer recurred. We did not, however, expect to face an entirely different type of treatment so quickly. As you have been following along with my health adventure this spring, I am on the fast track for learning about trial medications and traditional chemotherapy. And I’ve learned the downside of needing IV access to my arm veins for lab draws and medication infusions. To save you the hassles of learning while under stress, or simply to give you some interesting trivia to file away in your brain, let me share with you more than I ever wanted to know about “Chemo Ports.”

Since February, when we first learned that this cancer had reappeared, I have been at the cancer center at least once and sometimes twice per week. Each time I am there, they need to draw another tube or three of blood to monitor how I’m doing. Now that I am undergoing traditional chemotherapy (infusing poison into my veins to hopefully kill all fast-growing cells, including cancer cells), the staff takes tubes of blood out to be analyzed at the lab, then runs bags of fluid saline and medications into my veins. UGH!! A simple needle stick on each visit would be bad enough. But when you have veins (like mine) that dance and move around and blow valves to make themselves useless, it means multiple needle jabs until they finally find a “good” vein.

 

 

Once the nurse has used the needle to properly place the catheter line in the vein, the line is covered with a clear bandage and capped off so it can be used as needed for the rest of that visit. I bruise easily, so with multiple pokes every visit, you can imagine what my arms looked like. Yep, every shade of blue, purple, green, and yellow!

This bruising compounded the challenges. It became a treasure hunt to find a good vein which wouldn’t move or blow and which was not in the middle of a bruised area. Eventually, the staff would call for the ultrasound team to come each time to do the line placement. It was miraculous how their little machine helped them see the veins so they could get a good placement on the first try! Whew! What a relief!

And then… and then…

…the infusion nurse had enough of the hassles. One visit, she kindly and politely asked me why I refused to have a “port.” I didn’t really know what that was, other than it was something that many people who had cancer seemed to eventually need. I asked for more info and made it clear that I was in favor of doing ANYTHING to make the vein access be faster and easier. She explained the pros and cons. I quickly said “YES! Let’s make this happen.” She called my doc’s office, got the referral needed, and I was on the to-be-scheduled list to have a port implanted.

While we are waiting to get appointment with the intervention radiology team (which takes about forever to get scheduled), let’s talk a little more about ports. What are they? What do they do? How do they work?

Now wait a second! Aren’t ports the places where ships are loaded and unloaded to move cargo between water and land as the goods are moved around the world? Or aren’t ports the safe harbors where smaller boats can be anchored for repairs or to be protected from storms? No, No! My computer geek friends disagree. They say that a port is where network connections start and end for communications. How does any of this have anything to do with cancer treatment??

Okay, time for some explanations, similar to those given by my nurse. Here’s where the geek in me shines (hee-hee)!!

What Is a “Chemo Port” and What Does It Do? At the simplest level, a “Chemo Port” gives easy access from surface level skin to a deep vein. With consistent access, it is easy to draw blood for monitoring health and lab work, and to deliver fluids and medications through this larger vein through the heart for almost instantaneous circulation to the rest of the body.

 

At a more detailed level, the port is a device about the size of a quarter which is implanted under the skin of the chest. It is usually made of metal, with a rubber “septum” which can be pierced thousands of times with a needle through the skin. It has a small rubber tube called a catheter which runs under the skin between the access point of the port, into a larger vein (often the jugular vein), then ends just above where that vein enters the heart. In other words, the catheter is like a pseudo vein which bridges the gap between the port at surface level and the deeper, larger vein. This catheter also works like a vein extension to allow easy blood draws at the surface as needed.

I have a “double port” which simply means there are two access points in the device. This can be helpful if two different meds need to be run at the same time. It also means that if one point is temporarily blocked, the other point can be used immediately before taking time to flush the blockage. And when IV contrast is needed for a CT Scan, they need to use both access points.

How is a “Chemo Port” implanted into my body? There are several places a port could be used. The most common location for chemotherapy infusions is to place the port approximately 1” below the center of the right collarbone. This is done with a minor operation by the interventional radiology team. It takes one last IV line into the arm (last one, woohoo!) to run medications which relieves pain and anxiety and makes the patient very sleepy but not unconscious like with a general anesthetic. A local anesthetic is also used to numb the skin. 

Ultrasound is used to determine where to make each cut and where to place each piece of the port. A small incision (approximately 3 cm) is made in the skin on the front of the chest where a “pocket” will be created under the skin to hold the port. In addition, a small cut is made at the base of the neck to access a deep vein. The catheter is threaded under the skin between these two points, then threaded through the jugular vein until its tip is just above the heart. The end of the catheter is then attached to the port. All of this is verified by xray, then the incisions are glued closed. The surgery itself only takes 30 minutes or less, prep and recovery time take much longer!

Now, let’s go back to earlier images for a moment. At first it sounds ridiculous to compare a “Chemo-Port” with a marine port or a computer port. But if we look more closely, we find similarities: cargo is moved from one place to another, whether that is physical goods, computer information, or heavy-duty chemotherapy drugs! And a port just as easily allows things to leave, including making blood draws easier for the cancer patient. I guess my joking about ports isn’t as far-fetched as it first sounded!

All of this is More Than I Wanted to Know about Chemo-Ports … but I’m so grateful someone invented them and that they are now routinely implanted for cancer patients. It makes life SO much easier every week when I go back to the cancer center for another blood draw and/or treatment!

______________________________

Since I am an active cancer patient yet again, I decided to add a “health adventures” tab to my website. You can follow my current cancer journey in a couple of ways:

• click HERE to see frequent mini updates plus links to the pages below.
• click HERE to see a compilation of all the mini updates archived in one place: and
• click HERE to see photos and read blog stories about the ups and downs of this stressful journey plus posts from past health challenges.
• Feel free to poke around the site and check out other Big Epic Adventures I have documented in the past—backpacking and other outdoor fun, becoming a certified Nature and Forest Guide, trip reports, and other daily activities.

________________________

If you hate to miss the latest reports from my Cancer Journey, you can bookmark this intro page to read frequent mini-updates (which will not be emailed directly to you) OR you can scroll to the bottom of any page and sign up to receive an email notification whenever I make a new full-length blog post (not just an update to the intro page) which will include stories, photos, explanations, and a somewhat weekly summary of mini updates.

(THANK YOU for following with me on this cancer journey! I appreciate every comment, encouragement, prayer, good wishes, little gifties and other types of support. I can’t imagine doing this alone…)

Mini-Update from the Infusion Center

After a stressful few days of waiting for results of CT scans and poor sleep last night, I’m dozing here in the infusion center. I ate a good snack, they brought me a warm blanket, and the IV machine is quietly clicking and ticking—all pulling me to sleep!

As you may remember, being in the infusion center, starting cycle 3, Week 1 is good news! The scans showed that the cancer has slowed down from aggressive growth to a crawl while on these chemo meds for the past 6 weeks. I will do two more cycles then have another CT scan to see what impact the meds continue to have.

I’ve had some side effects appear in the past few days, most annoyingly significant swelling in my feet & ankles. Please join me in asking God to lessen this swelling. It’s not dangerous at this point—just irritating.

From experience the first two cycles, I’m likely to be sleeping a lot in the next few days. Don’t worry if you don’t see much from me until the weekend!

As always—THANK YOU for your support, prayers, good wishes and encouragement. You help me keep going!

Notes from the Cancer Navigator

It has been a few weeks since I have grabbed my computer and captured a few notes from the Cancer Navigator. These aren’t the earth-shattering big deal decisions that have to be made. These aren’t things that medical researchers are particularly interested in. But these little tidbits of things that made life easier (or harder) for me, might be of help to others. Feel free to add more bits of experience in the comments—perhaps you have the piece of info that someone else needs right now!

Set aside some extra money. Yes, we need to be careful with money with so many bills looming. But it is also important to occasionally treat ourselves to that bouquet, or this puzzle book, or the other piece of bling jewelry. This is especially important as a way to celebrate little moments of feeling well or to make oneself smile when feeling down. Somehow, having a little treat money makes this spending feel less thoughtless and more indulgent. (And it helps prevent the mega expensive impulse buy, as well!)

Remember that “being” IS a form of “doing.” When I am lounging and doing “nothing,” I need to take time to consider what else I am really doing. I might be resting. I might be pondering. I might be allowing myself to be loved. I might be setting an example to others who believe their value is tied to their productivity. I might be praying in whatever form that takes for me. I might be healing, in oh so many different ways!

Make yourself comfortable! Get PJs that double as hang-out clothes. Get comfy clothes that work as PJs. We have a huge benefit right now, folks! With so many changes in daily life due to this pandemic, there are more options than ever before for functional, comfortable, and CUTE clothes. (Just make sure to change clothes regularly, okay?!) Whether you are typing up notes from the Cancer Navigator or you are grieving the death of a dream or taking a nice long mental health break, there’s no need to wear anything uncomfortable ever again. When life goes back to “normal,” let’s rebel and choose to keep some of the better parts of daily life under covid… **This also applies to choosing comfort in your personal space, your calendar, and your relationships**

Finally ready to type up some notes from the cancer navigator

Where’s MY regular pattern, it always works this way, new normality of life? Please, tell me truthfully, do you REALLY know what to expect from day to day and week to week of your cycles of chemotherapy… or is that just a myth from cancer professionals? When hated foods taste yummy and beloved foods make you nauseous, does it stay that way from here forward? Or do you never know from one moment to the next what will taste good this time? When everyone says you will need a hat to keep your newly bald head warm, but you get sweaty if you wear a bed cap, are you the weird one? Or are they the unusual ones who everyone hears because they shout advice louder than others? (True confessions: I love the soft caps I’ve been given—they keep me comfortable throughout the day, keep my scalp hidden from the sun, and are a fun fashion statement. I just can’t wear them to bed!)

As I try to write notes from the Cancer Navigator, I am exhausted by all the new things I must figure out. As long as it is within doctor’s orders, it is okay to throw your arms in the air and refuse to make unnecessary decisions for a day (or two or five). For example, this week I was feeling good because I have finally figured out a pain prevention pattern that is working well for me. But then, I had bad diarrhea for a few days which I did not know how to handle. I couldn’t find clear info in any of the papers I’ve been handed over the past few months which freaked me out. So… to lessen the stress of too many unknowns leading to too many decisions to be made, I took my pain plan back to a strict schedule and dosage, as originally set by my team and I eliminated the “as needed” part of the plan. One less thing to think about and decide every 3-4 hours. That gave me emotional space to handle the decisions about GI upset and dehydration risks that were critically important for me to deal with. (Yes, I cleared this with my team—they agreed it was a reasonable change for now.)

Ask for tips to make things easier—from your nurse, from fellow patients in the waiting area, and from anyone else who might have practical experience about the cancer journey. I want my doctor to be brainy. I want him to communicate clearly. I want him to pay attention to the latest research which might benefit me. But I don’t expect him to also keep track of little things. I’ve been told to use a numbing cream on my port about 30 min before it will be used to lessen the “bite” of the needle going through the skin. A pharmacist suggested dry-mouth-mints might be helpful in addition to dry-mouth spray. I couldn’t figure out what to do with the cute little “port pillow” until on my way home from the procedure when the seat belt in the car was rubbing on the new tender area on my chest. Another tip—have duplicates of things like port-pillows so that you don’t have to remember to move it from car to car. Another patient shared that she always has the next dose of pain meds AND a snack with her—since everything always seems to run longer than expected. And after much searching online, I finally found some suggestions for shaving my head when clumps began to fall out. A hairdresser suggested that using a #2 blade ( ¼” ) would give me emotional time to get used to the change and give my scalp time to adjust to the different physical sensation of having little hair.

___________________________________

Since I am an active cancer patient yet again, I decided to add a “health adventures” tab to my website. You can follow my current cancer journey in a couple of ways:

• click HERE to see frequent mini updates plus links to the pages below.
• click HERE to see a compilation of all the mini updates archived in one place: and
• click HERE to see photos and read blog stories about the ups and downs of this stressful journey plus posts from past health challenges.
• Feel free to poke around the site and check out other Big Epic Adventures I have documented in the past—backpacking and other outdoor fun, becoming a certified Nature and Forest Guide, trip reports, and other daily activities.

________________________

If you hate to miss the latest reports from my Cancer Journey, you can bookmark this intro page to read frequent mini-updates (which will not be emailed directly to you) OR you can scroll to the bottom of any page and sign up to receive an email notification whenever I make a new full-length blog post (not just an update to the intro page) which will include stories, photos, explanations, and a somewhat weekly summary of mini updates.

(THANK YOU for following with me on this cancer journey! I appreciate every comment, encouragement, prayer, good wishes, little gifties and other types of support. I can’t imagine doing this alone…)

Another Quick Update from my Phone

I’ve got enough brains right now to make a short update but not to sort through internet connection issues for my computer. So I’m adding a quick short update from my phone.

Monday I completed the hair trim we started last week (when clumps of teal colored hair started falling out). I shaved my head to leave a fuzzy scalp. I was shocked that it actually looks GOOD!! (It’s one way to highlight my eyes—which I consider to be my best feature…)

I had the two meds infusion on Tuesday. It went smoothly. I felt reasonably good until I got back home and fell apart with an unexpected pain spike. Eventually made some changes with my pain/palliative team to give smoother long term control and was then able to fall asleep rest of Tuesday.

Yesterday, I had buzzy jittery energy from the 3 days of steroids wrapped around this bigger infusion day. I tried to copy my still very active mom (who is in her 80s) and do small energy burst tasks with cat naps (errrr, dog naps?!) in between to avoid huge crash from overdrawing my physical energy bucket.

“Origami Dog” triangulating to find a good balance of energy for her and for me

After a few very likely to be draining days of feeling horrid, exhausted, not hungry, etc, today through sometime this weekend, we are hoping for a gradual slide back upwards to feeling good for a week of days in a row. Next week is rest-week with no infusions.

As always, thanks so much for your encouragement, prayers and letting me know I’m not forgotten on this health adventure! Love to each of you…

Scattered Thoughts from the Midst of Chemo Brain

I prefer to be a coherent writer, finding and using the exact right word or phrase to express what I’m thinking or feeling. But that is apparently not possible this week! So here is a dispatch from a confused, wandering Chemo Brain.

Good news this week: yes, there has been a foggy, hazy chemo brain adding extra challenge to life. However, this past week has actually been better than expected. I have figured out how to manage the nausea meds/lack of interest in eating anything/pain meds labyrinth. Little pain and a mostly settled stomach are very good things!

As I mentioned in the mini-update I posted this evening, this has been a very sleepy week. I’ve been frustrated at not managing to do anything constructive all week… but keep reminding myself that I AM doing a stellar job of SLEEPING to help my body recover from the onslaught of cancer plus treatment meds.

In just two weeks more, I will have another CT Scan and we will find out if this treatment is effectively slowing, stopping or even shrinking the tumors. Please keep this critically important goal in your prayers, your thoughts, and your cheering for good results!

It’s a good thing that the landscape design/maintenance program that daughter is attending has only three days left before stopping for the summer. She may not have chemo brain directly, but she is terribly distracted and finding it hard to focus on anything school related. As a side note, I was able to drive her to school this morning. I have no clue if it is significant for her or not, but it is hugely important to me to feel a connection before she heads into school for the day… This was the first I felt up to driving her for many many days.

This coming week may be a rough one. Depends on if it follows the same pattern as week 2 of the first cycle or not. Tomorrow morning a friend is taking me to the hospital for the infusion of drug 1 and drug 2. Similar to Thing 1 and Thing 2 in the Cat in the Hat, these drugs cause mayhem at times as they are fighting to eliminate all fast-growing cells in my body—hopefully, including all the cancer cells!

Speaking of killing off fast growing cells… the typical chemo side effect of hair loss is happening, by the handful. I will write a full post about how I handled this… For now, just know that my hair is now a ¼” long dark fuzz. I’m surprised, but I actually kinda like it! Eventually, I will also get a wig or two—at least one in multi-bright-colors. If I’m losing my bright teal, asymmetrical hair-do, I can at least have fun with the replacement options, right?!

All right—enough blathering through chemo brain and writing down whatever comes into my mind in the given moment! Hope you were able to follow my thoughts… or that any confusions were at least entertaining!

As always—We couldn’t keep doing this without YOUR help! We appreciate every word of encouragement, note of concern, prayer, favorite song shared, brightness/beauty/joy that you find. It might not feel like much to you, but it makes a world of difference to me.