Critical Thinking: Remaining a Partner in Your Care

In May 2022, I responded to news of the further advance of my ovarian cancer. My trusty PET scan indicated enlarged lymph nodes, the spread to my right lung, and another pelvic mass. It was time to consider restarting chemotherapy.

Critical thinking and decision making

With all cylinders working, I agreed to treatment that would not cure but create additional pain and suffering. I can hardly believe I am saying this, but after 4 complete chemotherapy cycles, I think I have a handle on this. I also contribute all the help I receive from the aOC.net team, as we all share valuable information about our experiences.

The cycle of chemo

For me, a cycle represents a month of chemotherapy with 2 separate events.

Each event includes 6 hours of infusions with 3 chemotherapy agents twice a month. In addition, I receive steroids, antiemetics, and other required drugs. Each chemo day then stimulates 10 days of "darkness" that follow.

Once I receive the chemo, I focus on surviving the side effects. For the first 3 days, I need to return to the cancer center for an additional 500 to 1000 cc of IV Saline with extra IV piggybacks of magnesium or antiemetic agents as needed.

My post-chemo routine

Most of my cancer colleagues know that post-chemo, there is a need to receive injections of bone marrow-stimulating medications. Unfortunately, my white cell count, platelets, and neutrophils become depleted with every chemo event. In addition, this injection stimulates pain in my pelvis as the iliac crests are known to assist in bone marrow production.

Food becomes less significant but necessary. I choose pastina, macaroni with cheese, maple-flavored instant oatmeal, or creme of wheat. All of these choices allow for some independence in preparation.

Hydration is challenging but necessary. I drink whatever works at the moment. Being successful with diet cranberry juice also seems to ward off a urinary tract infection. Yeah, a 2-for-1! In addition, there are protein-enriched drinks like Ensure or the latest Enterade Advanced Cancer Formula adding metabolites, which didn't work for me due to taste issues.

Despite the terrible thought of ingesting anything

Drink and eat the best you can. Do so in small amounts if necessary. It aids in maintaining body stability and weight. It reduces the potential for electrolyte insufficiency, creating that turbulent experience with diarrhea and vomiting.

The essence is you can keep some control.

Rely on your treatment team

Make sure you carefully report to your treatment team. Your reaction to chemotherapy is manageable with some behavioral and medication assistance.

My center allows me to contact a triage nurse anytime they are open. They relate information to my doctor and quickly revise a plan. The team reminds me to be more aggressive and sometimes proactive with medication for acute diarrhea and vomiting symptoms.

I admit to avoiding it as my mind warned me that constipation could cause obstruction. I had to do a little self-talk and recognize I was ahead of myself.

Let me help you count the days

Once again, I am all about being in control. Did you say "Contol Freak"?

Well, yes, I admit you may not be the first. I also acknowledge that undergoing treatment takes you to a place you never imagined or wanted to be for long. The core of being in control for me is doing everything and anything to maintain my integrity. Therefore, I work hard on my mind, body, and spirit.

If there is no one there to talk to, then speak out loud to yourself. Weigh all sides of your action. You can do this. Make sound decisions and include others when you can. Do you have a trusted advisor? Ask yourself what they would do.

Let your body teach you

Years of conditioning make us use only our intellect. We become separated from our bodies as if we all are little heads walking down the street of life.

I finally recognize that each time I begin a new course, I can predict the day untoward symptoms will begin. Try it for yourself.

• Day 1: I come home and sleep for several hours but emerge able to eat and drink. I take advantage of this as it may be my last meal for a while. My doctor has ordered an off-label med to reduce nausea and diarrhea that I take on days 1-4. I praise him for this one.
• Day 2: I notice my stomach is starting to react, but I choose a hot cereal to settle it. I begin to feel the need to rest, although I may still be able to tackle some intellectual activities like paying bills. I remind myself to hydrate at intervals. Isolation sets in as I avoid phone calls and outside business, but I need a bone marrow-stimulating injection and IV fluids and head to the cancer center.
• Day 3: I am active in post-chemo symptoms and reluctant to do much. Another injection of marrow-stimulating medication, Labs, and IV fluids will be on order today. Otherwise, I begin my time of solace in a recliner to keep my feet from swelling. I move my feet and toes to prevent the worsening of neuropathy and hope it helps.
• Day 4: I usually am lacking in energy. I have lost smell and taste; it is hard to imagine food. I use medication as needed and make another trip to the center for fluids and an injection of marrow-stimulating medication.

My mind

• Days 5-8: These days can be a blur. I watch TV to keep myself company and stay in contact with the news.
• Day 9: I am starting to be less symptomatic by the end of this time and am considering take-out for dinner. This improves my spirit just to think of real food. After that, I go to the cancer center for labs.

My Spirit

• Days 10-11: I trust myself to go out in the car for a ride with my husband. It is summer, my favorite time of year, and I can enjoy lunch at an outdoor restaurant. Always acknowledging we may need to return home quickly, we have this in the mix of our plan. But my spirit is returning.
• Days 12-15: Woo hoo! Energy has returned, and I can even plan to be with others as long as my white cell count, and neutrophils are sufficient.

I did it! Pat yourself on the back and praise your strength and willingness to go on as well.

Editor’s Note: We are extremely saddened to say that on August 9, 2024, Ellen Reed passed away. Ellen’s advocacy efforts and writing continue to reach many. She will be deeply missed.