Strength, Setbacks, and Small Victories

A real and hopeful colon cancer treatment update * — the setbacks that challenged me, the small victories that lifted me, and the strength I found in between.

I would like to start this post with an apology: While I am feeling much, much better physically, my creative energy has been completely zapped.  Although Fall/Autumn is my favorite thyme of year , I just haven’t been able to tap into my creative side.  I drug all the totes out several weeks ago and they are still sitting in the living room waiting for someone to do something with them!  I did manage to get a fall garland added to the fireplace mantel but that is about it! Since it is the end of October, I may have to just move onto Christmas!  I do hate to overlook Thanksgiving.  I was in Illinois last weekend and spent most of this week recovering from the trip.  Hopefully next week I can get some new Thanksgiving content.

Now for the health update. 

A Little Background about My Situation

If you are unfamiliar with my health situation, here is a brief overview: 

In January 2024, I was diagnosed with pneumonia, extremely low Vitamin D levels and iron deficiency anemia. I began taking supplements for the Vitamin D and iron deficiencies.  Antibiotics were prescribed for the pneumonia.  I had lost a small amount of weight but I attributed that to my lack of appetite from being sick. 

Over the next two months, I continued to struggle with fatigue, digestive issues and weight loss.  Frankly, the weight loss was very welcome at that point.  My upper legs were the smallest they had been in years.  I went back and forth to my primary care nurse practitioner. 

My appetite during this period was still “off”.  It was a pleasant surprise on Easter Sunday that I was able to eat a full plate of food.  I thought maybe I had reached a turning point.  Well, I had but not in the direction I had hoped! 

April 5th, 2014 and the days following it, hold events that are ingrained in my memory.  After experience symptoms of what we thought was GERD for several months, the pain in my abdomen increased to the point where I could barely get out of bed.  I finally drug myself back to the Nurse Practitioner that had originally diagnosed GERD.  He sent me for a CT scan where a blockage was discovered.  I was given the choice of going to the ER late Thursday afternoon (April 4) or waiting till morning and going in then. 

Of course, I chose the option of waiting till the next day.  I was sure I could fix everything by simply doing a colonoscopy prep. Hah, joke was on me.  I couldn’t even get 1/4 cup of the prep down before it came right back up.  

I don’t even know what I was thinking when Dave took me into the ER that Friday. 

But

wasn’t even on my mind.  After all, I had had all my regular colon screenings. Much to my surprise, the ER staff told me I had colon cancer that afternoon.  I still remember arguing with them.  I didn’t win that argument. 

To read more about the first three months of my colon cancer journey, please visit Rooted & Established in Love

The events from August 2024 to April 8, 2025 are covered in this post: Colorectal Cancer Awareness Month

That time period was filled with emotional upheaval as well as physical challenges, setbacks and disappointments.  The major disappointment came from hearing the news that my ostomy couldn’t be as easily reversed (or possibly even reversed) as I had hoped.  I have basically came to accept that situation.  

A lot of things happened from April 8th of this year until the end of July.  All of the details can be found here: Colon Cancer Journey Update

Those three and half months were filled with a lot of side effects that may or may not have been related to my treatment.  Some of them were actually more related to my diet than my treatment. 

What Has Happened Since July 25th

At the end of August, I started seeing a new primary care physician.  My insurance changed at the beginning of July because of my eligibility for Medicare. It turned out that my prior primary care person didn’t accept my new insurance.  I found a new doctor who has been simply wonderful.  She actually spent over an hour with me, listening to me. The first thing she did was put me on a gluten free, dairy free, sugar free diet!  At first, I was a little leery and a bit overwhelmed from the big change in my eating habits.  I love bread products! I wasn’t sure I could give up Triscuits, bread and pizza crust! Those were the mainstays of my diet! 

I have done really well eliminating gluten from my diet.  I am currently doing better at avoiding dairy.  How am I doing with the no sugar?  How ’bout them Cubs!  That is what I saw when I don’t want to address a particular topic!  Those Cubs did have a great season, even if they didn’t win the series against the Brewers.  There is always next year!

Seriously though, overall I feel I am doing pretty good with my diet changes.  I haven’t had Triscuits, real pizza, French Bread, cheese or cookies in 2 months!  This is amazing!  The “old” me could eat a box of Triscuits in two to three days.  Many times, Triscuits and cheese was my lunch or dinner. 

Since the dietary changes,  I have felt the best I have in many years! My mind is clearer and I am slowly, slowly losing weight. My itchiness is so much better.  I am almost back to pre-cancer diagnosis level of itchiness.  I have suffered from unexplained itchiness since my hysterectomy 17 years ago.  At the height of my itchiness (before diet changes), I was taking several doses of Benedryl, hydroxicine and Pepsid a day.  I am now back to taking maybe 2 doses of hydroxicine a day, Benedryl a couple of times a week and Pepsid very rarely.  Getting relief from the itchiness is such a blessing.  I am no longer covered in Band-aids from scratching myself until I bled. 

I had a 2nd MRI of my brain in September.  It was targeted at my pituitary gland to see if there was an adenoma.  The results showed no adenoma, the gland was simply larger than normal.  So the pituitary was not the root of my endocrine symptoms.  The primary care doctor feels that most of them should continue to improve as my diet improves. 

I have also gone thru extra blood tests to check to see if my thyroid was working properly with my current medication or if I needed a stronger dose.  Everything in the blood test pointed to my thyroid medicine being the correct dose. 

Also in September, I had a bone scan to get a bench mark of my bone health.  The scan showed osteopenia but not osteoporosis.   I will continue with my bone strengthening shots. 

I have increased my activity level a little bit.  I have all the equipment I need to start doing yoga at home: the mat, the bands, the weights and most importantly, the cute outfits!  Now I just need to do it! 

Anyone who has gone thru cancer or any severe illness knows that you have good days and bad days.  I had had a string of good days. Until the last week, I was doing great.  More about what happened last week a little later in the post.  I have done so well these past few months, I haven’t even seen my actual cancer doctor since Thursday July 24.  His nurse practitioner has been able to handle all my visits.

Pet Scan Number 7

As my oncologist likes to say “the proof is in the scans”.   This time, there were a few spots in my lungs that were slightly larger and several that were smaller.  The scans of the abdomen and colon area remain clear.  While the nurse practitioner didn’t come right out and say it, it does appear that there is no sign of disease progression. 

I will continue receiving the immunotherapy drug, Keytruda every three weeks as well as the bone strengthening shot every 28 days.  

What Happened Last Week?

After having my treatment on October 16th, I somehow became dehydrated early the next week.  Tuesday morning, I just didn’t feel right.  I was nauseous, tired and had some intestinal challenges.  I took a Zofran for the nausea and napped during the day. That night, I had some weird dizzy spells which were probably vertigo but regardless of the technical name, I had to walk very carefully or risk falling. 

By Wednesday morning, I was starting to get panicked about my trip “home”.  I was supposed to leave Thursday afternoon.  Still not feeling right, I called the cancer center and my primary care doctor.  The cancer center had me come in for blood work and a bag of fluids.  While receiving the fluids, my emotions started to get away from me.  Gluten and lots of it seemed to be the answer to my feeling low.  I was just gonna go ahead and go to McDonalds after the treatment and eat whatever I wanted.  Fortunately, I same to my senses and did not abandon my diet.  

I saw my primary care doctor the next morning and she prescribed potassium tablets.  My blood work showed my potassium and chloride were low.  She thinks my blood pressure medicine might be too strong and may be causing me to loose too much fluid.  I am going to record my blood pressure twice a day for the next month.  

I did change my flight.  I ended up leaving on Friday afternoon.  I was glad I was able to be there from my friend’s celebration of life. I was able to spend some time with some childhood friends.  The visit was a bit stressful in that I managed to lose the keys to the rental car at the celebration of life.  It was fairly stressful as I had also locked my purse in the car with my phone and all my credit cards and money.  I did get a ride back to my friends’ house so I wasn’t stranded.  My friends had left early to go to a Halloween party.  Most of Sunday afternoon was spent dealing with the rental car company.  We did manage to get my purse out of the car before it was towed away.  That is an experience I don’t want to have to go thru again! 

On the last leg of the return flight home, someone had a medical emergency.  There were a couple of health professionals on board and they were able to care for the person until we landed.  

 

I am very grateful to my cancer doctor as well as the staff at Florida Cancer Center and Research Institute in Port Charlotte and Northport, FL.  The nurses and the lab techs are so good as taking blood and inserting the IVs that there is very little pain and discomfort.  I am also grateful for the support I have received from my husband, family and friends. Many people have been praying for me, and those prayers seem to be working! Thank you!

* I share these updates from my own experience and faith, not from medical expertise. My journey is just one story, and every person’s path is different. Please lean on your own doctors and care team for guidance that’s right for you.

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