The Big Epic

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Tag: Health Adventures (page 2 of 2)

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.

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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…)

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.

­___________________________

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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