Finding My Footing in the Hard Middle

An honest look at the hard middle of my colon cancer journey * — the slow progress, the emotional stretch, and the small moments that helped me find my footing again.

I would like to start this post with the following statement: For the past few days, I have felt the best I have in many months!  Anyone who has gone thru cancer or any severe illness knows that you have good days and bad days.  I am currently experiencing a string of good days. Yes, I still have some of the issues that I have been struggling with over the past few months but overall I am “good”.  In fact, at my last Doctor visit ( Thursday July 24), I was able to tell the Doctor that I didn’t have any major complaints.  I am sure the poor guy was relieved to hear this as I usually have a long list of things to whine about! 

The fact that I am currently feeling pretty good is a big relief.  The past few months have been filled with doctor visits, tests, more tests, blood work, constantly itchy skin, fatigue, edema and more.  

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. 

What Has Happened Since April 8th

In mid April, I had colonoscopy.  The doctor found three polyps which turned out to be thankfully benign.  The very next day, I had my 5th Pet Scan.  I scheduled the procedures back to back because I thought it would be easier to manage two days of prep in a row and then be able to resume eating as normal.  In hindsight, that was a BAD idea!  Because the PET Scan looks for inflammation, the area where the polyps were removed really lit up!  The radiologist had no idea that I had recently had polyps removed so he thought the cancer was spreading. A spot on my pancreas also lit up.  While the oncologist and I were fairly certain due to my blood work and lack of symptoms that these results were affected by the colonoscopy, there was still the chance that the scan was correct.  Lesson learned – don’t schedule the colonoscopy before the pet scan!

I also had a CT scan at some point during this period that revealed two or three hernias in my abdominal area.  One of them is behind my stoma which is what has been causing that area to stick out a lot more than it should.  For now, we are watching them.  Surgery to fix them is an option but the surgeon wants to wait until it becomes medically necessary.  Until then, I can wear a binder to help hold that area in.  

I completed my lymphedema therapy in early May.  I haven’t gotten my own pair of nifty leg pumps yet.  A simple phone call is needed to get that process started.  Varicose vein treatments were also completed in May.  While I still have some slight swelling and discomfort in my legs, they feel so much better! 

In early April, I started experiencing hot flashes and night sweats.  Having had a hysterectomy many, many years ago, I should not have been having these symptoms.  A visit to the gynecologist resulted in being prescribed an estrogen patch.  While it has helped to lessen the hot flashes during the day, I am still struggling with night sweats. 

Because I was having some other neurological issues, the oncologist decided I needed two MRIs: one of my neck and one of my brain.   I had the one of my neck first.  Before they slide you into the machine, they give you ear plugs and a call button.  The nurses warned me that the machine was noisy.  I was in the machine for somewhere around 15 minutes.  It was so noisy but overall it wasn’t a bad experience.  

Due to scheduling issues, they couldn’t do the MRI of my brain the same day.  I went back a few days later.  Since the first one wasn’t too bad, I was expecting this second one to be similar.  As it turns out, when they asked if I was claustrophobic, my answer should have been YES! The main procedural difference between the neck MRI and the brain MRI is the brain MRI requires an iron face plate. It is sort of like a Hannibal Lector mask! After clamping the mask over my face, they gave me the call button and slid me in the machine.  Shortly after they started the test, I started to mentally freak out.  I honestly thought I was going to have to push the button and have them get me out of there.  Finally, I managed to settle my self down enough to ask if it was better to leave my eyes open or shut them.  The nurse said to shut them and that seemed to help.  If I have to have another brain MRI, I am definitely going to ask for a valium or two and keep my eyes shut the whole time! 

While no definitive answers were found for some of my issues, a potential pituitary adenoma was found that could explain a lot of my endocrine related issues.  Pituitary adenomas are normally benign.  It could be the cause of my night sweats, sleep issues, and weight gain.  I won’t really know any more until I can see the endocrinologist in early September.  I am hopeful that something can be done to lessen the night sweats and sleep issues.  If the weight gain can be addressed as well, that would be wonderful!   

Before The MRIs, There was A Trip to the ER

In late May I had two different CT scans.  For one of them, I was given something called contrast.  I am not exactly sure what is in the contrast but it turns out I may be allergic to it.  While I am not 100% sure it was the contrast that caused the intense itching , my theory is that it was.  The itching was so fierce, it felt like there were fire ants crawling on me, especially on my back.  My normal “cocktail” of anti itch meds wasn’t enough to keep the itch at bay.  I was doubling up and even tripling up the meds and it was barely tamping the itch down.  I had a couple other things going on so I went in for a nurse evaluation at the cancer center on a Friday afternoon.  Basically, I left the cancer center disappointed that they didn’t address the itch issue.  Just recommended seeing a dermatologist.  I wasn’t able to get into the dermatologist for another 2 1/2 weeks!

By Saturday morning, my heart rate was elevated, my chest hurt, my hand was numb and tingling and I was still itching like crazy.  I had a few other things going on as well. At this point, I decided I had had enough and I drove myself to the ER.  Once I was there, I was seen pretty quickly.  Because of a couple of my symptoms, they thought I might have been having a stroke.  They were able to rule out a stroke as well as any heart issues.  While they were working on me, I kept asking about the itching.  Because the itching probably wasn’t going to kill me, they kept brushing off my concerns.  Finally, right before I was discharged , I asked again about the itching.  All I wanted was some steroids.  The ER doc finally said he would call in a script for a brand name drug.  I was so happy!  Finally some relief!  Once again, the joke was on me….. turns out the ER doc prescribed a lower dosage of hydroxycine, one of the drugs I take for itching anyway!  

It wasn’t until I finally got into see the dermatologist several weeks later that I was given a round of steroids to help get the itching under control. 

Pet Scan Number 6

As my oncologist likes to say “the proof is in the scans”.   At my June Dr appointment, I told the doctor that I was going to wrap myself up in cotton wool prior to my next scan.  Well, it must have worked!  I had the scan on July 17th and received the results at my appointment this past Thursday.  All of the spots in the abdomen that were “hot” in the April scan are now gone!  Other areas were either smaller or at least stable.  At the visit, the doctor once again said there was no biological or clinical evidence of disease progression!  This is very good news!

I will continue receiving the immunotherapy drug, Keytruda every three weeks as well as the bone strengthening shot every 28 days.  I am extremely hopeful that the endocrinologist can provide some relief from the night sweats, etc.   

 

Although he does frustrate me at times ( and I am sure I frustrate the heck outta him!), I am very grateful to my cancer doctor as well as the staff at Florida Cancer Center and Research Institute in Port Charlotte, 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!

* 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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