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!

 

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.

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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…)

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…)

Cancer Plot Twists — Chemo Week 2

I’m learning to deal with Cancer Plot Twists as things seem to always be changing! I love adventure…but at this point I would certainly be happy for some “boring” routine and stability. Last week I started summarizing multiple days of mini updates as a blog post. That way each of you who have subscribed to email notifications will receive a direct link to this post. I will still post a mini update occasionally by changing the intro page for Health Adventures on this website. (In the virtual world a page and a post are two VERY different animals!) To get the latest news immediately, you must bookmark the intro page and check it for yourself—no automated notifications for changes to webpages are available. Then every week or so, I will combine those into a blog post, and you WILL receive notification of new blog posts if you have subscribed to the email list.  Is that all clear as mud?! All rightee then… let’s talk about all the cancer plot twists from this past week.

This past week started with my second IV infusion of chemotherapy “poison” in our ongoing attempt to get tumor growth under control. A typical pattern for many patients is chemo day, fatigue that evening, gradually feeling bad for a few days after that, then gradual improvement until the day or two before the next infusion. We could say that is the typical plot of a cancer treatment story.

But as I said in the intro, I don’t seem to do anything in the “normal” way. I had a cancer plot twist followed by an even larger plot disruption! The mini-updates are below, in order of occurrence. If I was following the original plot, yesterday started week three of chemo—a week of no additional medication, supposedly a week of rest. As you will see, I’m still in the middle of plot disruption… but at least I have plenty of time to rest!

Tuesday, May 4, 2021 — This was chemo infusion day 2–same IV med slowly dripped into my veins over 90 minutes, immediately followed by a new more toxic drug administered over 60 minutes. It’s a bit scary when the nurse has to sit in the room and observe me for the first 15 minutes the med is dripping to make sure I don’t have any serious reactions or side effects. I am continuing to take anti-nausea meds proactively since the first chemo day last week. With this new toxic med, I’m on three days of steroids plus have a little timer attached to my upper arm to auto-inject a dose of Neulasta to help my white blood cell count stay in normal range. And because pushing the bone marrow to produce white blood cells more quickly than usual can cause an inflammatory pain, I’m taking benedryl or claritin now to proactively prevent some of that pain. A huge plus to this day was a long visit with the hospital chaplain we had met on my first day in the clinical trial two months ago.

Wednesday pm, May 5, 2021 — Hubby and I are shaking our heads in bewilderment at how I’m feeling. Definitely a cancer plot twist! I was full of energy as we left the hospital. I was seriously talking about grabbing some supper when we got home, then asking eldest son (who stayed a few weeks longer than the rest of the visiting kids) to drive me to Walmart to grab additional comfy things to wear or use during this round of 2 cycles of chemo. But then… everything CRASHED!! I was exhausted, I had a fever over 100, I had horrid nausea and heart burn, I couldn’t sleep but I couldn’t get comfortable. Then this morning, I popped up out of bed with energy and feeling fine. I got daughter up for school (but let Daddy drive her, I’m tryyyyying to be “good,” really!) I had a good chat with eldest son while I was eating leftovers of the yummy meal he fixed for everyone last night. I had a long catch-up phone call with a friend. I ate a good lunch. I forced myself to lay down and rest but was too energetic to nap. I took a handful of meds around 12:30 and realized it had been a full 12 hours since I had taken any of the meds…and I was feeling great! I’m happy to inform you that I’m still feeling good this evening. Perhaps I may ask hubby to take me shopping. Day 1 of chemo I’m “supposed to” feel decent. But then feel worst over days 2-3. So far that’s not my pattern… I’m praying this light side effects response will continue but know I will get flattened again at some point in the coming days.

Friday pm, May 7, 2021 — I stayed hyped and full of energy through Thursday morning. Then gradually, ever so slowly I slid doooowwwwwnnnn into another crash. Same symptoms: nausea, heartburn, fever, discomfort in any position, foggy brain, and more. Checking with my doc’s office today, apparently this high/low pattern is not uncommon when on steroids for a few days. At my next appointment in 10 days or so, I plan to ask what the reasons would be to only take that steroid for three days around the 2nd infusion of the entire 3-week cycle or if I could take a lower dose of steroid for a longer time. Still not feeling good this morning–it’s been a day to be grateful for a comfy bed and for big windows that let lots of light into the bedroom.

One different thing this morning… I woke up as a one-man-band-street-performer. (Go look ’em up, really! They are hilarious!) When I got out of bed this morning and every time I tried to move around today: My hips go clickety-clack, my knees wobble, my shoulders join in with a pop pop while my thighs go jiggle, jiggle. Don’t forget about my head pounding out a crazy rhythm, thump, thump, thump. My back adds a shiver up, shiver down and my feet insist on tickle, tackle, pins and needles! Apparently, this, too, is “normal” at this stage. Drug #2 from Tuesday kills all fast-growing cells, including white blood cells. To boost my immune system, I was given a shot to throw white blood cell production into high speed in my bone marrow. And that, supposedly, explains the floppiness and noisiness in my bones! (Thanks to daughter Anna who came up with the words for the different sounds. My brain fog couldn’t have done it!)

Sunday pm, May 9, 2021 — A few texts sent to our far-flung kids on Mother’s Day evening. I’m so glad we all gathered a few weeks ago. I would have been extra grumpy if I was at urgent care and missing time with them today! “We are at the James Cancer Center urgent care, waiting on labs and for a CT scan to be done. I have had stabbing back pain all day for no reason we can think of. The Dilaudid they gave me is kicking in. I’m still aware of the jolts of pain every few minutes but don’t seem to care anymore! HA!”

And then later in the evening: “Docs decided they want an MRI to better figure out the cause of low back pain. Those tests take many weeks to schedule as an outpatient and none of us think it is wise to delay… so I’m being admitted sometime soon. The MRI will be done later tonight or in the morning [or sometime Monday, or maybe during the night on Monday, or what about Tuesday? MRI’s are an in-high-demand procedure!] Randy has headed home for the night. As long as they keep pain under control and eventually figure out the cause, I’m happy to stay, even though it’s a cancer plot twist.

What do we need right now?? Prayers, encouragement, cute animal videos texted to me, anything to keep me occupied while we “hurry up and wait!” Don’t worry, both SASSEM sloth and hubby are here to keep me company.

Monday pm, May 10, 2021 — Yep, it has definitely been a hurry-up-and-wait kinda day. I was admitted to the James/OSU last night. Sleep was disrupted, as usual, by taking vital signs, checking on pain levels, giving more pain meds, and even a doctor doing an ortho assessment. I’m happy to report today that food is decent, the quiet is peaceful, hubby is allowed to be here with me all day (while he tries to also get some remote work done), and I have beautiful views of the metropolitan area from our 19th floor aerie! Had a series of xrays done today–to rule out back pain being caused by bone/ortho reasons. Took a meandering walk with hubby around the loop of rooms. Dozed, texted with a friend, had vitals recorded and pain meds given, napped, chatted with hubby, ate lunch, dozed, had vitals and pain meds, and on and on this oh-so-exciting (??!!) day progressed. Still waiting for an MRI, possibly tonight during the night, more likely sometime late afternoon tomorrow (apparently, I’m still about halfway down the list from being added to the list last night!!) As always, thank you SO much for your concern, your encouragement, your prayers, and your support. We couldn’t get through this without all of you!

Wednesday, May 12, 2021 – I keep thinking I will be discharged so I should wait to wrap up this post at a logical stopping spot. However, cancer plot twists continue to occur, I’m still at the hospital, but they assure me I will probably go home today (same as Tuesday, same as Monday, oops, not yet!) Nothing specific has been found as the cause of this back pain, but I have an updated meds list from the pain & palliative team, and now we wait for the various docs to all agree at the same time that I can GO HOME! Don’t worry… you will hear me yell “Hallelujah!” when they finally get their act together!

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

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

________________________

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

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

Hit by a Mack Truck — Chemo Week 1

(I’m trying something different. Please be patient while I tinker a bit to make updates and blog posts and notifications easier for me to write and easier for you to receive. As you likely noticed, I mostly disappeared during Chemo Week 1 when I felt like I had been hit by a Mack truck and was horizontal for much of the time. This iteration, I am summarizing multiple days of mini updates as a blog post. That way each of you who have subscribed to email notifications will receive a direct link to this post. I will still post a mini update occasionally by changing the intro page for Health Adventures on this website. (In the virtual world a page and a post are two VERY different animals!) To get the latest news immediately, you must bookmark the intro page and check it for yourself—no automated notifications for changes to webpages are available. Then every week or so, I will combine those into a blog post, and you WILL receive notification of new blog posts if you have subscribed to the email list.  Is that all clear as mud?! All rightee then… let’s get rolling!)

Earlier in this current health adventure, I captured in my art journal the perfect image of how I wanted to interact with cancer. I would be a classic VW bug running right through a white picket fence labeled “cancer.” Sure, there would be some owies here and there and a bit of mess to clean up, but I was going to charge forward, choose my own path, and avoid being a victim. (In case you missed it, I wrote previously about choosing to label myself as a Cancer Navigator rather than a Cancer Survivor HERE and HERE.) That image of pushing right through the obstacles, has been mostly accurate so far. I have surgery. I recover. I have scans. I have surgery. I recover. I have scans and scans and scans. I have tumors too big for surgery. I start on a low side effects targeted treatment. I’m still doing mostly fine moving forward.

But then…

         But then…

I got smashed emotionally by learning that the “easy” path was no longer mine. It was time for all the anxiety and worry and fear to get triggered by choosing chemotherapy as the right next step to try as we continue the search for what will stop the growth of these specific tumors, perhaps even shrink them. Suddenly, the “I got hit by a Mack Truck” of cancer experiences was an accurate description for me.

In addition to emotional wreckage, in the past week I have experienced being hit by a Mack truck in the physical realm as well. Here are a few recreated mini updates that I might have written in the past seven days, had I not been completely flattened by pain, anxiety, utter fatigue, lack of appetite, and more. Chemo is no joke, I tell you!

Monday pm, May 3, 2021 – 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 – 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 – 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 – 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 – 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.

So, making a short statement into a long story, I am forced to admit that no matter how much I choose to pursue adventures and live exuberantly, sometimes it is just a reality that I will get hit by a Mack truck. The bigger question is what I choose to do after being flattened…

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…)

Storytelling to Calm Anxiety

Background:

Learning to calm anxiety can be a huge challenge for the cancer navigator who is spending time in Cancerland. This debilitating emotion is way beyond simple worry or frustration. It tends to appear when the world is careening out of control, when life feels tenuous, when it feels like a fight for survival itself. When I started having anxiety meltdowns and panic attacks this past fall (because of family reasons, not cancer at that point), I started taking meds plus making regular appointments with a variety of therapists. This weekend, while waiting for the results of yesterday’s CT Scan, I’m struggling big time. (Good morning, Honey. Thanks for making breakfast. Now hold me tight and let me soak your shirt in tears. And no, I don’t have any words to explain my outburst. Sigh… )

I expected it to be difficult waiting to learn if this current treatment is working or not. Based on past timing, I expected the radiologist’s reports to be posted online sometime early next week. But… at the end of the workday on Friday, the test results for the chest CT scan were posted. Whew! No changes, no evidence of disease. And then… nothing… the report for the abdominal CT scan was referred to in that first report, but it has not yet been posted. Oh NO! This sent my anxiety through the roof, imagining horrible reasons for the delay.

Storytelling as a Tool to Calm Anxiety:

Off and on all day today, I’ve been using a tool I learned from my music therapist. The human brain is wired to collect stories, be guided by stories, and organize the world via stories. These stories are the way our brains resolve any uncertainties. When we only get a tiny bit of a story, our brains fill in the gaps to determine what is happening based on past experiences, similar stories, small details we notice, our feelings, and predictions of future outcomes. As you might imagine, those guessed-at-but-now-feeling-true stories will often be very skewed and might not bear any resemblance to what will actually happen.

Using storytelling to calm anxiety can be done in many different formats—music, art, talk therapy, journaling. I initially learned about our brains’ preference for stories through an exercise of listening to a piece of instrumental music and writing down what I imagined was happening. The therapist and I then shared our stories, laughing at the huge differences. We discussed what experiences, details, and feelings led each of us to imagine that particular story. Then we did the exercise again, using the same music but capturing a different story than we chose the first time. As homework, I have been asked to practice this exercise regularly, coming up with at least 3-5 different explanations each time. (This is an entertaining activity to try with family or friends.)

A second exercise is closely related and has the same goal of building flexible thinking. In this assignment, I had to state the terrible thing I was anxious might happen. I had to identify which bits were known facts, then build on those things with a worse scenario, followed by an even worse outcome, until I had come up with 3-5 outlandish stories. This never fails to make me laugh!

Today’s storytelling:

With both of those exercises, I’ve been building flexible thinking in my brain, rather than simply clinging to one “catastrophizing” story. So, here’s the scenario for today’s therapy:

The radiologist posted the report for the chest CT scan. He has not yet posted the results of the abdominal CT scan. Why not?

My Anxiety-induced Story: Last night and today, I am fighting against doomsday assumptions. Obviously, he did not post the abdominal scan report because it shows significant tumor growth and additional tumors. The radiologist is concerned for me. He wants my doc to be the first to see the report. My doc will give me the bad news at my appointment on Tuesday.

As I recognize my anxiety and remember that I have no way of knowing what is actually happening, and as hubby reminds me to use my storytelling to calm anxiety, I have come up with the following:

Story 1: The radiologist has worked extra shifts this week and is exhausted. The chest CT report was easy, so he posted that. But he could not keep his eyes open long enough to deal with the abdominal CT report. So, he left it in his to-do folder and went home to bed. He will be ready to handle it when he comes back to work on Monday.

Story 2: The radiologist is shocked when he looks at the abdominal scan and compares it to the images from 4 weeks ago. There is no evidence of any tumors whatsoever. He hesitates to post this as a report, however. He decides to have his co-worker look things over on Monday to verify the miraculous results.

Story 3 (worse version): The very expensive scanner malfunctioned. There is no abdominal CT to report on. I will have to wait another few weeks for an appointment to have the scan redone.

Story 4 (even worse scenario): The radiologist completed the abdominal CT report. However, he was so excited to be leaving for next week’s vacation to the Caribbean that he didn’t notice he pushed the button to delete the scan and the report rather than the button to post it. Nobody notices the error until he returns to work in another 10 days.

Story 5 (an outlandish story): The radiologist was just getting ready to post his report when Russian operatives kidnapped him. They were certain this was top secret information, so they made him save the scan and the report on a thumb drive they handed him. They then smuggled both him and this contraband information out of the hospital and to the airport where a super sonic jet transported them back to Russia. In the meantime, the US government learned about the kidnapping and heist. They insisted that both the doctor and the information be returned to the USA at once. When Putin laughed about it, a nuclear war began. It did not take long for the entire earth’s population to be wiped out… all because the radiologist dawdled on posting my results.

Your Turn: I would love to read more outlandish stories to calm anxiety while I try to not completely freak out this weekend! Please, please post your short “explanation” of why the abdominal CT scan results were not posted online with the first report! I’m certain many of you have even better stories than the ones my anxious brain came up with.

Thanks for taking time to read my silly stories! Please add your version in the comments 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 site to see 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 blog post.

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

I am Unique!

We all know that I am quirky and artsy and nerdy, all at the same time. I’m happy to announce that medical science has now authenticated how unique I am. Really! I’m not joking! Let me explain…

Unique in my Family

First of all, did you know that I am the “Queen Bee” of my family? A few years ago, my newest daughter-in-law asked what we wanted to be called. I told her that I had ALWAYS wanted to be called the Queen, but for some odd reason, none of my kids had ever agreed to do so. From that moment on, she calls me QB. And gradually a few other younger friends have started doing the same. How many moms are acknowledged for being the Queen? That’s one evidence that I’m certainly unique.

Next, we have a large family (7 kids, most now married, with 1 who has given us 3 grandchildren). I thrive on helping my kids pursue their individual interests. This was a major reason that we chose to homeschool most of our kids for most of their K-12 education. Perhaps that does not make me “unique,” but it definitely proves I’m unusual.

Medically Unique

Finally, we get to the medical reasons why I am quite unique. According to the latest data, in 2019, there were 1.7 million Americans diagnosed with cancer. Among the many possible types of cancers, I was diagnosed with Leiomyosarcoma (LMS). Sarcomas make up less than 1% of all cancers, which makes me part of the <17,000 who have this broad category of cancers. Among those sarcoma patients, my specific type of cancer is 10-20% of that category. Thus, I am part of the 1700-3400 individuals who are diagnosed with LMS each year. Genetic mutations are found in only 6% of those with LMS, which means I belong to a small group of 100-200 patients nationwide. (I also have two different types of DNA mutations which drops me to an even smaller group, but there are no percentages available for that.) So according to medical data, I am a unique cancer patient.

I am the Queen Bee of cancer and everything else!

Unique Treatment

The downside of having a rare cancer, is that most of the available treatments are only 40-50% effective in halting tumor growth. That is a discouraging number, especially when considering chemo, which has such awful side effects. I will likely have to try these different treatments eventually, but hopefully not for a long time.

The intriguing thing about being part of the < 100 people with DNA mutations in their LMS tumors is that there is a brand-new treatment drug which targets one specific mutation that I have. I am in a Phase 1 research study to see how effective this medicine is and to get an idea of what side effects it might cause. This is preliminary to future studies to eventually get FDA approval for this drug. And the best thing? So far, there are virtually no side effects. This is an 8-week study of which I am in the 3^rd week of taking pills each morning and evening. At the end of this clinical trial (in 5 more weeks), I will have a CT scan to verify how effective the drug is for me—whether the tumors have grown, have slowed to stay the same as they were at the beginning of the study, or perhaps have even shrunk. If tumors have grown, I will have to try one of the less effective treatments mentioned above. However, if it is proven to be a good fit for me, I will be able to remain on this drug for the long term. Sometimes, there is great benefit to being UNIQUE!

Thanks for taking time to read this explanation of how I am “Unique” in the world! Now that 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 of 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 site or you can scroll to the bottom of any page and sign up for email notification whenever I make a new post.

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

Becoming a Cancer Navigator — Part 1

When you are exploring a new place—in the car or on foot—how do you find your way around? You might simply follow a clear path to discover where it leads. But more often, we want precise directions. Take the left fork, turn here, stop there. Do you prefer to follow instructions from someone you trust? Or do you prefer to be the navigator—figuring out where you are, where you want to go, and how to best get to that place? I HATE being passive and definitely prefer to be the decision maker. It’s the same for me on this health adventure. I much prefer to be the Cancer Navigator!

I Prefer to be the Navigator

In the previous post, I explained why I dislike being called a Cancer Survivor, Victim, or Thriver. I told you that I am happy to be called a Cancer Navigator… but what, exactly, do I mean by that? And why do I prefer that title over more common labels?

To me, becoming a Cancer Navigator implies taking an active role in making decisions. The name has positive vibes which encourages me to stay engaged and involved in my treatment rather than becoming a passive victim or survivor. And the term acknowledges the importance of continued learning and questioning at each stage along this journey.

Youngest daughter and I have backpacked almost 500 miles of the AT (Appalachian Trail). (If you look in the archives, that was why I first started this blog before our first long trek in late summer 2015.) Taking a multi-week hike requires significant amounts of advance planning to choose which section to hike, gather gear, plan when and where to resupply food, and more. On the other hand, because it is so well marked, an adventure on the AT does not really require many navigational skills. We just had to follow the trails and landmarks on the map, look for white blazes which show the way, and read trail signs. The AT is well-traveled enough to generally be easy to follow without getting lost. (Click HERE to read about Getting from Point A to Point B Without Getting Lost on the AT)

Sometimes, a health adventure is like those trips we made. The patient goes to the doctor, then follows the clear path that is standard protocol for that particular illness or injury. Honestly, most illnesses or injuries do not require navigational skills to help with decision making. Unless something unexpected happens along the way, the patient simply follows the path that is laid out for them by their health care provider.

Call Me a Cancer Navigator

So why would I call myself a Cancer Navigator? Can’t we just follow standard protocols for my treatment? Nope! My cancer journey is not a simple “walk in the woods.” It is more like bushwhacking through unknown territory while trying to keep from getting totally lost! I have an exceedingly rare cancer which means there are few standard treatments available and many of the possibilities have a low success rate for survival. In the past, this diagnosis would have been considered terminal. Research offers new targeted treatments which move this diagnosis from terminal (death in a few months or years) to being an incurable, chronic cancer (something I will hopefully live with for many years to come). In my case, I am clearly not on a well-traveled trail. To keep from getting lost in the deep woods, I must hone my navigational skills and figure out which route is more likely to help me live the longest time possible.

Fortunately, I am not alone on this health adventure. I have a supportive husband who helps me sort through information, think of more questions to ask, and make decisions. I have a medical oncology team who communicate clearly and whom I trust. And I am getting treatment at a cancer center known for its compassionate care and cutting-edge research.

The Basics of Being a Successful Navigator

We rarely stop to think of it this way, but building strong navigational skills is important in many aspects of life. It applies every time we try something new, whether by choice or necessity. Learning how to successfully sort through options and choices applies to concrete activities such as driving, backpacking, and boating/cruising. And it applies to less tangible tasks such as effectively working with the education system, the workplace, and the healthcare system.

We spent many years navigating the home-school world

At its simplest, building effective navigation skills in any setting can be summarized with three simple questions which must be answered:

• “Where am I currently?”
• “What location or goal am I aiming for?”
• “What’s the most effective way to get there?”

It might take awhile to clearly define the answers to each step. In addition, the goals, and methods of reaching them are frequently changing. This requires flexibility on the part of the navigator and his/her team. Finally, the navigator must keep in mind the specific needs and desires of the individuals who are participating in the adventure.

The Basics of Being My Own Cancer Navigator

When I consider these questions as a Cancer Navigator for my own journey, my answers look like this:

• The chronic cancer I was diagnosed with 2+ years ago, has recurred. This time it is aggressive and growing quickly.
• Obviously, I would prefer the goal of being completely cured of all cancer. However, we must face the reality that this is a “chronic cancer” and will continue to recur for the rest of my life. So, the current goal is finding a way to live fully for as long as possible while co-existing with this cancer. (I will write another post soon to explore this concept more fully.)
• My doctor presented several options for treatment this time around. We assumed surgery would be scheduled asap. However, both my doc and the oncology surgeon made it clear that surgery was not a viable option until the current cancer is under control and the multiple tumors are shrinking. We had to consider the pros and cons of each route as we decided which treatment option to pursue first.

As you know, if you have been following this most recent health adventure, we chose to participate in a research trial of a new, very targeted medication. By trying this option first, we can easily move to another treatment if this fails to control my cancer. But if we had tried either of the other options first, we could not have gotten into the trial later. I am starting week 3 of an 8-week study. If the medicine is as effective as we hope, the trial sponsor will provide me with these pills for as long as I need them after I finish these closely monitored two months in the study.

Please let me know if there is something you want to know more about from my cancer journey! I’m happy to answer questions… In upcoming posts, I will compare being a Cancer Navigator to being a Navigator on an ocean-going ship. I will describe how this Phase 1 drug trial works. I will  explain how most cancer treatment has moved away from being an all-out “war on cancer.” And I will share a few short, hopefully entertaining stories from this cancer journey path.

If you hate to miss the latest reports from my Cancer Journey, you can bookmark this site or you can scroll to the bottom of any page and sign up for email notification whenever I make a new post.

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

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Now that 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 of 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.

I Refuse to be a “Cancer Survivor”

There are several titles given to people who are fighting cancer: “Cancer Survivor,” “Cancer Warrior,” “Cancer Thriver.” It’s fine with me if others choose to identify with any of these groups. However, I refuse to accept or use any of these names. They don’t fit with my experience of living with chronic cancer.

“Cancer Survivor”

Prior to the mid-1980s, anyone dealing with cancer was called a “cancer patient” or a “cancer victim.” In 1985, Dr. Mullan introduced the term “cancer survivor” to be used from diagnosis to end of life. He felt it was more encouraging and that this new title would better empower patients. Whether they had a poor prognosis or a good one, they were all dealing with cancer.

Don’t get me wrong! I definitely want to live for many, many years after being diagnosed with cancer 2+ years ago. I dislike this phrase because it sounds like I’ve been the victim of some terrible trauma. In my imagination, when I hear “cancer survivor,” it means others have been destroyed but I’m still standing, with ragged clothes, bandages everywhere, and a far-away gaze that is fixated on the horrors I’ve been through. This vision does not fit with my experience so far. I’ve had two surgeries (recovery wasn’t fun but it also wasn’t traumatic) and am currently taking a targeted medication that causes very few side effects. This is certainly a difficult path to walk emotionally, but I don’t feel like a “cancer survivor.”

“Cancer Warrior”

At first glance, this might be a good description for me. When facing challenges, I tend to stand strong and fight through to the other side of the obstacles. With chronic cancer, every few years I can expect another round of battle. The problem with this label is that the cancer world is changing its focus since the 1970s when President Nixon declared a “war on cancer.” My oncologist often reminds me that our goal is to figure out how I can live in balance with this cancer. (I will explain this more fully in a future blog post.) We want to slow tumor growth and calm its aggressiveness. I am on a (hopefully) long journey. I am not just a soldier in a one-and-done war. I am not a “cancer warrior.”

“Cancer Thriver”

Nope, I am also not a “cancer thriver.” I suspect this less-used title is an attempt to show the changing outlook toward treating cancer. It does have a positive vibe to it—thriving, not fighting—but it feels too Susie-Sunshine-Always-Happy. A constant refrain of “be happy,” “be positive” “claim your victory” gets very tiresome. Most of us who deal with any chronic disease face frequent challenges. Sometimes life is difficult. We keep walking but aren’t necessarily skipping or dancing along the path all the time. As an optimistic realist, I am not a “cancer survivor” but I am also not a “cancer thriver.”

Other Titles for Cancer Patients

I’ve tried to come up with other names for those like me who are dealing with chronic cancer. Cancer winner, cancer conqueror, cancer victim, cancer hero, cancer fighter—all of these phrases fall flat for me, for reasons similar to what I’ve expressed above. Quite honestly, most of the time when I’m talking about myself, I am more likely to acknowledge homeschooling our large family or being a Nature Therapy Guide or being an artist or a writer. Cancer is only one facet of my very full life. However, for times when I want to acknowledge the health adventure I’m currently going through, my hubby helped me find the perfect phrase for ME!

I am a Cancer Navigator!

Thanks for taking time to read this nerdy post! I love choosing just the right word to describe something. And I enjoy learning about the origins of words and phrases. Now that 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 of 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.

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If you hate to miss the latest reports from my Cancer Journey, you can bookmark this site or you can scroll to the bottom of any page and sign up to receive an email notification whenever I make a new post.

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