The Big Epic

Connect with Nature - One Adventure at a Time

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…)

2 Comments

  1. I’m praying for you Jill. You have been through so much, and I hate that you have to go through this. I’ll be thinking about you every day and sending you love.

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