The Big Epic

Connect with Nature - One Adventure at a Time

Tag: Health Adventures

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… )

man calm anxiety of crying woman

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.

1950s woman on phone

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.

anxious woman peers through hands on face

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.

queen bee, unique chocolate box

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.

unique, woman wearing tiara
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 3rd 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?

selfie, middle age woman

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)

backpackers, hikers, fall woods
AT blaze, backpacker on trail

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.

masked patient in pre-op, stuffed sloth

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.

homeschooled students at table
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.
masked patient in exam room, stuffed sloth

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…)

________________________

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”

woman with IV walking down hospital hall; 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”

woman with bandaged arms wearing mask, 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”

woman in hospital gown with oxygen tubing in nose, cancer survivor

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

couple in snowy woods

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.

________________________

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…)

Nerd Notes from a “Cancer Imposter”

I’m beginning to feel like a Cancer Imposter. Friends and family keep asking me how I’m doing with the nasty side effects of treatment. After all, everyone knows that a cancer patient is exhausted, nauseated, bald or almost bald as all hair falls out, immune compromised, either skeletal or puffy from steroids, and more. That IS an accurate picture for many patients. But only for the ones undergoing chemotherapy or radiation. So far, my cancer journey has not included either of these forms of treatments thus I am not experiencing these side effects. (Whew! That’s one positive thing for me!) If I don’t look or act like a “normal” patient, does that mean I’m a cancer imposter? Of course not! But it’s hard to explain sometimes…

Selfie of woman relaxing

As I described in the back story to this round of cancer (If you missed it, read the summary HERE), previous treatment has been abdominal surgery to cut out the tumors. When quarterly scans in early February of this year showed that the cancer is back and is aggressively expanding, we expected to hear that I would need another operation ASAP. It was a shock to hear that I’m not a good candidate for surgical removal of the tumors this time around. No other cancer treatments can be used during the 6-8 week recovery period because they kill fast growing cells, including those needed for healing. Unlike prior rounds where cancer removal was simply cut-and-go, this time there are so many small tumors that it isn’t possible to eliminate all cancer cells via surgery. And in the 6-8 weeks of recovery from an operation, I would likely be back to the same place I currently am as the tiny cancer cells left behind would aggressively regrow into new tumors.

Why don’t I have the “normal” side effects of cancer treatment? Does Santa know that I’ve been good? Am I just lucky? Is God answering many prayers for me to have an easier time? Or am I a cancer imposter? Actually, NONE of the above reasons are accurate.

Traditional chemotherapy involves using a cocktail of chemicals to poison and kill all fast-growing cells in the body. This is often an effective way to eliminate tumors, but the poison does not pay attention to which cells it attacks. If the cell is fast-growing, it is killed by the chemicals. This includes cancer cells but also hair growth cells, cells in the digestion system, cells in the immune system, and more. This wide-scale chemical warfare results in the well-known side effects.

Radiation kills cells in one specific area of the body rather than killing all fast-growing cells. This means many of the typical side effects of cancer treatment are avoided, but since radiation kills both healthy and cancerous cells in the targeted area, the patient often struggles with painful localized side-effects. These include nasty problems such as difficulty swallowing, shortness of breath, damaged skin, stiff joints or infertility.

My oncologist drew out a nifty chart. (Good thing I used to type papers for med students years ago—I can read doctor scribbles just fine. HA!) He gave me three different options for treating cancer this time around. I could choose chemotherapy, which is 40% effective against my type of rare cancer. This would likely be the best option for fully shrinking the current tumors. I might end up on this treatment regime eventually, with all the typical side effects, but it is not a long-term treatment, so it doesn’t seem like the best option to try first. (Besides, I have no possibility of kayaking or backpacking this spring if I have to get chemo infusions every few weeks and am dealing with nasty side effects!)

cancer treatment options

Because I have two DNA mutations in the tumor cells, I am a good candidate for two different very targeted treatments. In both cases, there are limited side effects because these are not blanket-bombing, all-out war on a wide variety of cells. One treatment is already FDA approved, but it is only effective for 50% of patients. This is certainly a viable option. It meets the criteria of using a medication long-term if it is effective, but this option doesn’t actually shrink the tumors, just kills off specific cancer cells.

The third option is part of a Phase 1 clinical trial. (More about what that means in a future post…) There is extremely limited data at this point on how effective this medication will be, but it is described as “very promising.” In addition to killing specific cells that have the targeted DNA mutation, preliminary results show some shrinkage of tumors as well. This option has more uncertainty since rounds of trials are just beginning, but I can stay on it long term if it works well for me. If it doesn’t seem to do anything to fight my particular tumors, we can quickly switch to one of the above options instead. We decided to give this medication a try. Dealing with limited side effects is definitely a positive!

What am I experiencing so far? I have no side effects from treatment. On the other hand, there are challenges caused by the cancer itself. As the tumors continue to grow rapidly, they are putting more and more pressure on my internal organs. At this point, I’m having significant pain rather than just being uncomfortable. I wanna tell that biggest tumor, stop being rude! Figure out how to share the space in there! Keep your hands to yourself. (Oops! That’s what I used to yell at the kids when we were on a road trip. I don’t think the tumor is going to listen to me… Haha!) The pain meds cause some level of unsteadiness, fuzziness and/or sleepiness. But that’s manageable. The largest tumor hides just behind my bladder and is pushing hard on it. This means that in addition to pain, I have limited capacity in my bladder, so I pee small amounts frequently. Finally, because of the pain meds I’m taking, I have to take other meds to prevent constipation. I’m not a fan of taking a zillion pills every day, but if this will stop cancer growth and possibly shrink the tumor, I’m all for it!

diagram of tumor location

My oncologist says that these symptoms caused by the tumors themselves will significantly lessen within a few weeks if this targeted trial medication that I started last week is effective. Please cheer me along and pray with me (in whatever manner you support others) that I will be even more of a “cancer imposter” very soon, with no side effects or difficult symptoms at all! That will be a day to celebrate when we see that tumors are shrinking, and cancer is on the run…

Thanks for taking time to read this nerdy post! I’m learning all sorts of new information about how cancer treatments work. 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…)

The Back Story of my Cancer Journey

Some of you have been along for Round 1 and Round 2 of this current cancer journey. You might already remember much of this back story. But for those who are just now joining me on this health adventure, welcome. Let me share some history so you don’t feel lost.

ROUND ONE:

In late September 2018, over a period of two weeks, I was at the ER four times because of bleeding and unrelenting, increasing abdominal pain. Docs quickly discovered a mass in my uterus but weren’t in any hurry to schedule surgery. On the fourth trip to the ER, it was decided to do an emergency hysterectomy. That was absolutely fine with me! I went through menopause years ago and Just. Wanted. The. Pain. To. STOP!

comfort blanket for cancer journey

After I was in the operating room, the surgeon decided to do one last exam before starting the surgery. She was shocked to find that my body was already working to eject the gangrenous tumor. She verified the decision with my hubby in the waiting room, then did a D&C to clean out the uterus without removing it.

As with any large tumor, a biopsy was done. Results came back with a tiny number of irregular cells. Because there weren’t enough to classify this as cancer, they diagnosed it a STUMP tumor (soft tissue tumor of unknown malignancy potential). And the surgeon referred me to a gynecological oncologist in the big city.

In December 2018, Dr. Bixel convinced me (after much discussion) to go ahead and have a complete hysterectomy including ovaries. Her feeling was that there was absolutely no reason to risk possible future cancer when my body no longer needed those parts anyways. I reluctantly gave in and surgery was scheduled just a few weeks later.

After the robotic surgery was successfully completed, Dr. Bixel cut apart the uterus to inspect it. She found a tumor (smaller than my little finger) hiding in a corner and sent it off for biopsy. A few days later I got that phone call no one ever wants to receive. The tumor was an extremely rare cancer called uLMS (uterine leiomyosarcoma — lay-oh my-oh sar-coh-ma). This is a silent cancer that is very rarely found before it is life threatening and has taken over the entire abdomen.

If the first surgeon had done the hysterectomy, she would never have found the tumor. She’s not a suspicious, super detail-oriented oncologist, after all! If I had refused the “unnecessary” surgery, the tumor would not have been found. But God was working in this back story and Round One ended happily.

ROUND TWO:

Follow-up 2019: We considered switching to a medical oncologist rather than staying with Dr. Bixel. But she was confident she could continue overseeing my health adventure. Because she believed all traces of cancer had been removed with the surgery, it was decided that I needed follow-up CT scans every 6 months. Scans in July were clear. Whew!

December 2019: Another set of routine CT scans. Everything should still be fine. But…. Yep, there was a plot twist in the back story, and 3 more tumors were found this time. All within the same area where my uterus used to be. That was quite a shock! Surgery was scheduled for as soon as possible—meaning I celebrated New Year’s Eve in the hospital. As one friend said later, at least I was entering the new year with no more cancer!

Hubby and I didn’t want to ruin Christmas for our grown kids, so we waited until after Christmas to tell them all what was going on. That was a surreal week, celebrating the joys and hopes of Christmas but also feeling shock and fear about what this recurrence might mean while trying to keep quiet about the struggle. I did reach out to a few prayer-warrior friends to ask them to hold us in prayer through those weeks.

Winter 2020: Surgery on New Year’s Eve was successful. All tumors were removed and had “clear margins.” (meaning no cancer cells left behind) It was a full abdominal incision which resulted in many weeks of recovery. (And don’t even get me started about the nurse who botched taking out stitches causing an open wound that had to be tended to day after day…) We had a houseful of extra family staying with us through the winter, so there were plenty of folks around to help with meals, shopping, chores, keeping mama entertained and keeping an eye on youngest (teen) daughter while I was lazing on the couch (and not so silently going crazy).

woman standing by woods and pond
(Last outing before surgery)

Some of you followed this portion of my cancer journey via the many photos and posts I shared on Facebook as I shared the ups and downs of those months. (You are welcome to scroll through my fb archives if you want to catch up on that part of the story.)

Hopeful Months 2020: As I was recovering from surgery, we had a consultation with a medical oncologist who specializes in Sarcomas (soft tissue cancers). It was an extremely easy decision to switch to Dr. Chen as my primary oncologist. Before coming to head this department at OSU/ The James Cancer Hospital, he did his training at M.D. Anderson, one of the top sarcoma centers in the USA. He and his team are good listeners, help guide decisions to be made based on MY preferences and are encouraging without spouting useless positive platitudes.

Dr. Chen is careful about details. He ordered additional testing on tumor tissue plus a specialized MRI to make sure that shadows seen on the CT scans were simply that and not small tumors. We learned that my form of uLMS is quite sensitive to estrogen and has two different DNA mutations in its cells. This information made next steps clear: start Letrozole (an estrogen blocker) and monitor for recurrence with quarterly CT scans. uLMS is a “chronic cancer” so we knew it would recur eventually, but with the estrogen blocker, we were hoping for 2-5 years before the next surgery would be needed.

Each scan during 2020 came back clear, “NED” (no evidence of disease). These are words every cancer patient and oncologist loves to hear! And so, we coasted our way through the rest of the year.

BAD NEWS 2021: It is quite common for cancer patience to have significant “scanxiety” before each quarterly tests. I was surprised to notice that unlike earlier rounds of testing, this time I had no anxiety at all in the weeks and days leading up to my scans on February 5. I had a sense that God was reminding me of his promises to “make the way straight” and that I could relax and let him take care of things. Whew! What a shock just 5 days later, to get the test results. Yikes! There was one large baseball sized tumor and multiple smaller ones scattered throughout my pelvis and abdomen… all of which had grown in the three months since the last clear scan in November.

The past month has been crazy–with doctor visits, consultation with a surgeon, and decisions to make about which treatment option makes most sense to us as well as contacting family and friends to let them know what is happening . Last week I started “Cancer School” as a patient in a medication trial. That’s where this blog begins.

cancer patient with companion stuffed sloth

Thanks for taking time to catch up on my history via this back story! 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 listed 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 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…)

First Day of Cancer School

Tuesday, March 9, 2021 was my first day of Cancer School. Yes, I’ve had surgery to remove tumors twice in the past 2+ years. But this was different. Somehow, spending a day in the treatment center to take my first medication through a clinical trial, followed by labs every few hours, was hard to bear emotionally and mentally. I really AM a cancer patient. This really IS serious.

First things first—I am NOT doing chemo at this point. I was accepted into a Phase 1 Trial for a very tightly targeted medication. I will take pills twice a day at home, with weekly visits to have lab work done. Unlike chemo, there have been very few side effects noted so far with those already in the study. Here’s my “handbook” for Cancer School with everything I need to know about being in a clinical trial for treatment.

Here are my notes from my first day of Cancer School. I include schedule, activities, thoughts, and various ponderings from throughout the day. Randy drove me to the hospital and stayed with me for the exceedingly long day.

We leave home at 6:15am. I have to be fasting—no food and, worse yet, NO COFFEE. (Why yes, I was indeed grumpy. Why do you ask?!)

On the hour drive to the big city, we talk about some of the realities of what we are facing—possible worst case, better case, and hoped-for best-case outcomes. It is kinda scary that within the next few weeks we will more clearly know which is likely to be true for me. We REALLY need this med to be effective!

Here is the traditional photo of the student on the first day at a new school. With my cuddly companion, Sassem the Sloth, of course.

the James Cancer Hospital; OSU medical center; First Day of Cancer School; Cancer Journey

7:30am: all signed in, heading upstairs to the Clinical Treatment Unit. Yikes! This is real.

Paperwork, more paperwork, forms, questions, more forms, informational handouts, more questions… sigh… I think a forest was killed for all the paper used today.

The nurse gets a vein on the first try (yay!) and inserts a line to hopefully be used throughout the day to draw blood for required labs. Once the first labs come back within normal ranges, my doc comes in to talk with us. He checks on how I’m doing, answers questions we have, laughs at my Art Journal pages about his words from an earlier visit. As always, he gives us the feeling that he has all the time in the world to spend with us—even though he is a busy specialist. He signs off—treatment is a go! Meds are ordered from the pharmacy, more fasting bloodwork is taken for the study, and I finally get breakfast and coffee. Ahhhhh….

I’m here for the rest of the day, with more blood draws at various intervals for study purposes. Over the 10 hours we are here, they will collect 18 vials of blood. At least I requested a bed to lounge in rather than a chair. And I’ve got the bonus of windows with a view. (Please don’t remind me that it is a beautiful, warm sunny day outside while I’m cooped up in here…)

lego mini fig; James Cancer Hospital; OSU Medical Center; City Views

10:00am: I take the first 4 pills of what will hopefully allow me to coexist with this cancer for the very long term…

The chaplain comes in to introduce himself. He asks how we are doing. I respond with a laugh, “Considering what we are facing, we are doing Fahbulous! We only cry every few minutes.” We end up talking together for quite a long time. He asks such good questions and opens doors to help us as we continue to process what this cancer recurrence means—individually, as a couple, as a family.

12:00pm: blood draw #4 for the study. Randy gets himself a lovely, healthy salad from the bistro downstairs. He offers to buy me the same, but I just want “comfort food.” Chips and a chicken salad sandwich with my usual half sweet iced tea taste delicious.

After lunch, I put the head of my bed down and doze for awhile. Early mornings, emotional stress, and boredom have caught up with me.

Another blood draw at 2:00pm. It’s a challenge for the nurse to get blood out of the pic line…but it’s still holding so far. One more draw in another four hours. Sure hope the line is still usable then. I HATE repeated sticks when they struggle to get a good vein.

Time for some art journaling, snacks, texts and planning what additional pages I want to add to this website/Heath Adventures. By now, both of us are weary—not just physically tired, but deeply drained after an emotionally difficult day. I didn’t expect the first day of Cancer School to be so hard! This is not something I ever wanted to go through…

The final blood draw close to 6:00pm was a challenge. The line didn’t want to give those last few vials of blood, but the nurse was persistent. Whew! Done for the day!

We pack up our belongings, and head home. I have all the meds needed for the next four weeks. After two hectic days at the hospital, I think I will just lay around for the next few days. I need the rest.

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(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…)

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