My 3rd Year Anniversary of Beatin’ the Odds

 

I debated whether or not to post this as it’s a personal story, part of a journey, but it’s an important one to me. So here goes.

Beatin’ the odds for Stage 4 colon cancer, and I just completed my 3rd year of chemo!

My CT scans have shown nothing significant since a 10cm section of my large intestine was yanked out by the Da Vinci Machine in March of 2020. They couldn’t get to a couple of lymph nodes (too risky) so they removed my appendix for no additional charge.

My follow up treatments did not require radiation therapy. I’m currently on maintenance infusions every two weeks to keep the little beasties in check. The side effects are tolerable, and I don’t dread the treatments. That’s partly due to the clinic staff. Fun people.

The first few treatments were kind of boring, but at least I had a window facing the hospital entry. I listened to talk radio on my cell phone while visually diagnosing the patients who passed by. The staff were all professional and cordial but didn’t say much as they completed their tasks.

Then I did something accidentally brilliant.

I told the gruff (yet professional) nurse that she was my favorite. She stopped and stared, then said “Um, thanks.” The next treatment, I got a different nurse and told her the same thing. She laughed, said no one had ever told her that before. I repeated this experiment until I had quietly informed each technician, including the male nurse. He looked at me real funny when I told him.

The payoff happened the day I walked into the clinic and all the nurses were arguing with each other about who my favorite nurse was. It became a recurring event as each one tried to bait me into confessing. They never broke me, and we’ve had fun ever since. From then on they reserved the best chair for me, and pre-arranged the furniture the best view. (That particular station was directly under a return air grille so I could fart with impunity).

I’ve been fortunate – some of the patients I spoke with in the waiting room had it rough. All reported getting “chemobrain” that resulted in odd behaviors; one said she had a habit of putting inappropriate things in her freezer, like her tennis shoes.

For those who are curious, I kept a diary of sorts, and included a summary of my side effects, posted below.

---

CHEMO SIDE EFFECTS SUMMARY

General:

• Side effects tended to come on earlier, recovery longer as treatments progressed, until Oxylaiten was stopped. With oxylaiten, the lethargy came on fast and hard. 90 minute naps were needed every 4-1/2  hours or so.
• Occasional night sweats during days of infusion.
• Mild intermittent hiccups on infusion week.
• Occasional chills in extremities after infusion. Chills eventually ceased once Oxylaiten was stopped.
• Appetite was not affected except for increased hunger for 2-3 days after infusion.. Occasional runny nose after meals.
• Very mild headaches during treatment week. No ibuprofen needed. Headaches ceased once Oxylaiten was stopped.
• Dry skin, occasionally itchy. Reductions in dosage eliminated these side effects.
• No driving for at least three days after infusion due to mental/visual effects.

---

Mental:

Acuity:

Temporary “fog” on infusion day due to anti-nausea medication.

Acuity diminished after infusion, lasts several days. Symptoms include memory lapses, trouble finding words in mid-sentence, difficulty with mental arithmetic. Symptoms persisted for longer periods as treatments continued, eventually lasting for entire week.

Mental Skips:

Occasional difficulty choosing correct words, remembering names or losing train of thought mid-conversation. Tendency to forget previous conversations and/or repeat myself. Easily distracted.

Sequence:

Occasional sequence confusion with simple tasks, some things done wrong or out of order unconsciously. Most noticeable when conversing and tasking simultaneously.

Vision:

Isolated visual aberrations throughout entire treatment process, peripheral vision only: something might change color or texture for a split second, or appear to move, then look normal when looked at directly. They weren’t hallucinations, more like subconscious misinterpretations.

Some sensitivity to bright light.

Aural:

Increased tinnitus during treatment week, became more noticeable and steady by June 2021; high frequency peal similar to the tone of a triangle. Sudden  noises became jarring.

Taste Perception:

Slightly sour/bitter taste toward back of tongue, not “metallic.” Affects plain water and most foods. Acidic foods more than others, sweet or sour foods not as much. Increased with each infusion. Effects ceased after Oxyplaiten was discontinued.

Touch

Back of left hand feels wet when touching a cold dry surface (like a tile countertop). No “shock” sensations on frigid surfaces, but cold sensitivity in hands and feet increased over time. Occasional chills in hands and feet after infusions. Chills all but stopped in Spring of 2022.

Time Perception:

Time seems to pass more quickly. Some things that happened recently seem to have happened days or weeks ago.

---

Lethargy:

During days of heavy lethargy (beginning third day of infusion, lasting two days) late afternoon naps helped somewhat. I describe it as “rubber bands squeezing the brain.” and “tunnel vision of the mind”. Amazing feeling.

Lack of interest, lack of focus. Multi-tasking is almost impossible.

Decisions are difficult to make, logic is impaired.

The amount of lethargy diminished somewhat after Oxyplaiten treatment stopped. It lessened again after a 20% reduction in fluorocil dosage beginning 31 May 2022. The daze of chemobrain never completely goes away – some days it seems my brain only fires on seven of eight cylinders.

---