Thursday, July 10, 2014


Today I'm turning this space over to an anonymous patient. I received an email a few days ago asking me if I would take a look at what is printed below. Not only did I look, I found myself nodding in agreement at every word I was reading. I offered to share Steph's thoughts on this blog.

She did not want her real name used. Steph will be in the job market and fears any potential employer might find this, see how how she struggles and automatically dismiss her application because she is, in a word, disabled.

I'm fairly certain many who read this blog will relate to what she has written. The good news is that the medical community is listening. The not so good news? Presently, there is no solution. There are "work around solutions" which, unfortunately, do little to help some of us regain skills that were second nature in our pre-cancer lives.

My heartfelt thanks to Steph for baring her soul, for validating each one of us who still struggles with the fallout. Chemo, for some of us, is the gift that keeps on giving.

“Seriously, Steph?  You don’t remember me telling you this just two days ago?”
This isn’t the first time the Boyfriend has mentioned something I have forgotten, nor will it be the last.  Typically he’s reminding me of a conversation we had days earlier and I have already forgotten what we have talked about.  However, I have also completely forgotten specific events, like the time friends of mine came to my house.  I have no recollection of their visit.   Why am I so forgetful, one may ask?  
Chemotherapy-induced cognitive dysfunction/impairment
Cancer-therapy associated cognitive change
Post-chemotherapy cognitive impairment
The American Cancer Society’s website lists the following as examples of chemo brain:
  • Forgetting things that they usually have no trouble recalling (memory lapses)
  • Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
  • Trouble remembering details, like names, dates and sometimes larger events
  • 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)
  • Taking longer to finish things (disorganized, slower thinking and processing)
  • Trouble remembering common words (unable to find the right words to finish a sentence)
I had my last chemo treatment in March 2011, but I still struggle with chemo brain.  Most of the time, I can manage and cope with the occasional inability to finish a sentence because I can’t say that one word at the tip of my tongue or the countless times I completely forget why I got up from my seat.   The Boyfriend and some of my friends have found my blank face funny when I’m sputtering out incomplete phrases, but I never let on that I find it frustrating and at times, humiliating.  My hair has long since grown back and my scars have faded, but my brain?  It’s still recovering from four months of chemotherapy.
ABC anchor Amy Robach recently gave an interview to the New York Daily News regarding the affect chemo brain has had on her life: “The chemo brain, the chemo fog, is a real thing.  I would have conversations with people, they would take pictures with me after the show, and they would send them to me and say thank you, and it took my breath away – it upset me tremendously because I actually wouldn’t be able remember taking that picture or having that conversation and for me, that was one of the hardest side effects of chemo.  I was so afraid I was gonna drop the ball, or just do or say something stupid because I wasn’t in my sharpest mode.”
I have joked about my chemo brain (because if you don’t laugh, you might cry), but this is actually a serious problem for me.   All the memory problems, tendencies to space out and forgetful moments have taken a toll on my job performance, and I have come dangerously close to being fired.  This company bent over backwards for me during my treatment – all my treatments, surgeries, appointments, etc.  I considered myself lucky for having such an accommodating company during the worst period of my life.  I never received any flack for needing a half day for an appointment, and nobody admonished me for mistakes I made in my report during chemo.  They treated me with the utmost of patience and compassion.
Several years later, the patience is gone.   It’s been three years since my last chemo treatment, and seemingly ancient history to my superiors.  Ancient history!  Since last November, I have been receiving negative reviews from my superiors, which has caused my stress levels to skyrocket.  (They must have been wondering, “Okay, how long are we supposed to accommodate her?”)  After I realized how bad things had gotten for me, and my stress levels reached epic high levels, my chemo brain symptoms became worse, and the negative reviews kept coming.
I panicked.  I changed how I was approaching my day-to-day duties.  I was positive that I was turning in quality work after a month or two.  My superiors disagreed.  I panicked more.  I had been at this job for more than seven years, and now I was awful at it?  How did this happen?  I certainly didn’t want to lose my job, so I wrote countless notes to myself, setting reminders.  Instead of ignoring my forgetfulness, I decided to embrace and accept it, writing so many notes, I was pretty sure that I was becoming that dude from “Memento.”  Gradually, and I mean like six to seven months later, the negative reviews stopped coming my way, but the damage has been done (including missing out on a merit raise increase this year).   After a long period of positive reviews, surviving several layoffs at the company prior to my diagnosis, I was now a problem employee, one that superiors had multiple meetings to discuss.  
A May 13, 2014 SFGate article reported that studies showed the long-term affect treatment had on those undergoing breast cancer.  The study, according to the article, showed that “employed patients who received chemotherapy treatments were 1.4 times more likely to be unemployed four years later, compared with breast cancer patients who didn’t have chemo.  They were also more likely to report being worse off financially four years later.”
I read that article during the period of negative reviews and my first reaction was, “Yeah, sounds about right.”  
As for how long does chemo brain last, some estimate that it can last up to five years.  A May 4, 2011 New York Times article stated that it may last five “or more” years, citing a study of 92 cancer patients at the Fred Hutchinson Cancer Research Center and published in The Journal of Clinical Oncology.  
“However, verbal memory and motor skill problems continued after five years among a large group of patients.  Although some neurocognitive deficits are expected to occur with natural aging, the percentage of cancer patients who still had cognitive and dexterity problems at five years was 41.5 percent, twice as high as the 19.7 percent reported in the control group.”
That’s definitely not a promising statistic.
When active treatment for my early stage breast cancer ended, I know I wanted to put it behind me.  I was definitely told by my family and friends that they, too, wanted me to put all this illness behind me, and I learned the hard way how much my company also wanted it.  I definitely do not want to convey the message that I’m excusing poor performance solely on chemo brain.  I do think it played a large part, though.  My body, including this battered brain of mine, has been through quite a bit, more than most typical early 30-somethings.
I plan on continuing to complete my day-to-day responsibilities to compensate for these challenges.  Every time I find myself becoming complacent, the feedback I receive reflects such complacency.  I remain diligent and I have to remind myself to be patient, too, repeating frequently, “Time heals all wounds.”  
Even the ones you can’t see.

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  1. Whew. Yes. I hope we soon come to see disability as something to accommodate and work around rather than something that needs to be hidden. It starts with sharing stories like this. Well done to you, Guest Poster. ~Catherine

  2. Dear "Steph" - Yes, yes, & yes! I went through treatment with one employer and am now at another. Fortunately it is within the same "system" so I know the culture. However, I am so aware of my limitations and the fact that my current employer didn't "go through treatment" with me that I actually made an appointment with the HR Title IX Coordinator. She was extremely gracious and assured me that no one had anything "bad" to say about my performance. I still have those word drops that I describe as "holes in my brain" and this is 6 years out. I've developed "work arounds" and I realize my own limitations are minor compared with others. But I understand the frustration. I wasn't like this before. Keep the faith. As an employee, you have rights.

  3. I fully understand the consequences of "Chemo Brain." I was in remission from Papillary Thyroid Carcinoma diagnosed June 2001 to March 2010. At which time I was diagnosed with Clinical Stage IVB Breast Cancer (T2N1MO bilateral) breast cancer, Multifocal disease, high Ki-67 with sub pectoral and axillary lymphadenopathy, Her2 + by FISH, and Stage III-B endometrial cancer, which were each found to be unrelated to the Papillary Thyroid Carcinoma of 2001.

    Upon diagnosis with Breast Cancer and Endometrial Cancer, I underwent forty-seven weeks of adjuvant chemotherapy. Prior treatment that I received for thyroid cancer consisted of radiation only. In pure ignorance, I equated the cancer treatment that I was to receive would be somewhat similar to my prior experience. I understood that I would lose my hair, experience a change in eating habits, have some nausea and sickness, perhaps some tiredness, simply the basic common side effects.

    Nowhere did I read that there was a possibility of loss of brain function.

    Presently, I am receiving ongoing treatment for Congestive Heart Failure related to neoadjuvant chemotherapy, chemotherapy (“Femara”), and a recent diagnosis April 2014 of malignant Metastatic Papillary Carcinoma. June 2, 2014 I underwent a Modified Radical Neck Dissection wherein twenty-five malignant lymph nodes were removed, and I was just treated with 100.3 mg I131 Radiation. I have a mass in the right frontal lobe of my brain, “Glass in my Lungs”, and I am unable to process oxygen. Glass is defined as tumors in my lungs. At this time, I do not know more. My decision is to not know more because I am not in an emotional or financial position to endure more than today.

    In addition to the harsh consequences of working through such traumatic events, I discovered that my employer had disclosed my confidential health history to customers, employees, and outside third parties, including the medical insurance broker utilized for employee benefits that I “suffered from “chemo brain.” It is my understanding the owner of the company continues to share my confidential health history and present situation with many of the same parties.

    To make matters worse, during the latter part of my employment, the company owner offered to provide me administrative leave with full insurance benefits paid for by the company for as long as I needed, according to him so that I have time for my “brain to heal.” I carried the medical and dental insurance for both my husband and me through my employment. I understood that I was covered by medical insurance. Therefore, I underwent the medical attention that I needed. It was when the medical bills started arriving that I learned that my medical benefits had been discontinued by my employer, and without ever disclosing the cancellation to me.

    I have lost most everything in my life because of my cancer and chemo experience. My experience has resulted in significant emotional and financial loss.

    I have used all of our savings, 401(k), and IRA funds to pay for counsel and monthly expenses. We sold all our vehicles and we purchased a single used vehicle with over 100,000 miles on it to share so that my husband can go to work and so that I can attend my doctor appointments, and we sold most of our personal possessions trying to survive. We have filed personal bankruptcy, which has required additional legal counsel.

    I have no money left for medical bills, prescriptions, groceries, utilities, mortgage payment, and legal counsel (they are unable to provide further legal services without further retainer). We can barely purchase a few groceries. We have nothing remaining and I have lost hope. I do not know what else to do.

    I have lost my self-confidence, my career, and my self-worthiness.

    1. I am sick that I am just reading this comment now, a year after it was written. There is no way for me to track down anonymous comments which is how I always wanted this blog to be. I wanted it to be a safe place for anyone to share anything without fear of being identified. It is things like this, however, that are so distressing. I am so sorry I didn't see this sooner. I don't know if the commenter was following further messages. From what I'm reading, I wonder if this person survived all of what she describes. This is unacceptable. This is what much change. THIS is why those of us with voices must speak for entire communities. My dearest anonymous, my deepest apologies for not reaching out with a reply sooner than this. I am truly sorry.


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