Replacing What Chemo Brain Takes Away

Article

Sadly, we cancer survivors are often measured by what we’ve lost to cancer. I would like to put something back in the space left by all the things taken away.

It is only with the heart that one can see rightly; What is essential is invisible to the eye. - The Little Prince

Ask ten medical professionals whether or not chemo brain is real and you’ll likely get a variety of answers. Ask ten cancer patients and the response might be, “Wait, what was the question? Oh yeah, chemo brain. You bet it’s real!"

Whether it’s the result of physiological changes, chemical imbalances or a stress response, chemo brain remains one of the inheritances of facing the cancer challenge.

The American Cancer Society describes the following as reported symptoms of chemo brain:

  1. Forgetting things that they usually have no trouble recalling (memory lapses)
  2. Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
  3. Trouble remembering details like names, dates, and sometimes larger events
  4. Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they are less able to do more than one thing at a time)
  5. Taking longer to finish things (disorganized, slower thinking and processing)
  6. Trouble remembering common words (unable to find the right words to finish a sentence)

Sadly, we cancer survivors are often measured by what we’ve lost to cancer. Whether it’s cognitive functioning, organs, body parts or even the illusion that we're invincible, cancer and its treatment, is fraught with minuses. Therefore, I would like to put something back in the space left by all the things taken away.

I’m introducing the phenomenon of chemo heart, CH for short. This condition manifests itself on the day we’re diagnosed and progressively spreads the longer we face the challenge. CH is a condition of increasing awareness of one’s true nature and the felt connection with the whole of life, characterized by:

  1. Remembering to appreciate friends and loved ones
  2. No trouble looking past small slights, slanders and insults
  3. No trouble seeing past life’s distracting minutia
  4. No trouble making one's primary task to enjoy life
  5. Taking one's time to linger over life's simple pleasures
  6. No trouble remembering to honor others who are also facing this challenge

Unlike its evil twin, chemo brain, chemo heart puts us squarely in the plus column. Additionally, CH is a bonding experience. Sit next to a stranger who has also been on a cancer journey and you’re family; tied together by the human bond of shared trauma, tears and triumphs. Perhaps the best news is that CH works below the level of thinking and therefore is not impacted by brain functioning. There's nothing we need to remember in order for our hearts to grow larger through the experience of a life-altering illness.

This is not to say that CH comes to us automatically or that it can’t be distorted by other conditions. Let’s be honest, there is a time for the inevitable lament of “Why me?”

The grief that comes with any illness brings with it the inevitable four horsemen of denial, anger, depression and bargaining. CH does not erase these experiences. Instead, it allows us to hold these painful experiences in loving awareness with self-compassion. In the end, CH does not provide an answer to “Why me?” but it can remove the need for the question.

Perhaps, someday they will find a cure (or at least develop preventive techniques) for chemo brain. If we‘re lucky, there will come a time when everyone is measured by the workings of their hearts rather than their minds and all will see what is truly essential. In that case, we cancer survivors will have a head start.

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For patients with cancer, the ongoing chemotherapy shortage may cause some anxiety as they wonder how they will receive their drugs. However, measuring drugs “down to the minutiae of the milligrams” helped patients receive the drugs they needed, said Alison Tray. Tray is an advanced oncology certified nurse practitioner and current vice president of ambulatory operations at Rutgers Cancer Institute in New Jersey.  If patients are concerned about getting their cancer drugs, Tray noted that having “an open conversation” between patients and providers is key.  “As a provider and a nurse myself, having that conversation, that reassurance and sharing the information is a two-way conversation,” she said. “So just knowing that we're taking care of you, we're going to make sure that you receive the care that you need is the key takeaway.” In June 2023, many patients were unable to receive certain chemotherapy drugs, such as carboplatin and cisplatin because of an ongoing shortage. By October 2023, experts saw an improvement, although the “ongoing crisis” remained.  READ MORE: Patients With Lung Cancer Face Unmet Needs During Drug Shortages “We’re really proud of the work that we could do and achieve that through a critical drug shortage,” Tray said. “None of our patients missed a dose of chemotherapy and we were able to provide that for them.” Tray sat down with CURE® during the 49th Annual Oncology Nursing Society Annual Congress to discuss the ongoing chemo shortage and how patients and care teams approached these challenges. Transcript: Particularly at Hartford HealthCare, when we established this infrastructure, our goal was to make sure that every patient would get the treatment that they need and require, utilizing the data that we have from ASCO guidelines to ensure that we're getting the optimal high-quality standard of care in a timely fashion that we didn't have to delay therapies. So, we were able to do that by going down to the minutiae of the milligrams on hand, particularly when we had a lot of critical drug shortages. So it was really creating that process to really ensure that every patient would get the treatment that they needed. For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.
Yuliya P.L Linhares, MD, an expert on CLL
Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL