Chemo Brain

I have always been a little on the absent-minded side. I blame that on my creative nature and my propensity to daydream.

What I did not expect to happen was a frightening fogginess that prevented me from remembering the names of a few people I have known for 30 years. I also recently had some short-term memory loss. I have had moments where it was just empty upstairs.

I talked to my GP about the problem and was given the Montreal Cognitive Assessment (MOCA) to check for dementia and cognitive impairment. The part I had the most difficulty with was the mental numeric calculations. I did not pass the MOCA test. I had to reassure the brand new GP that I honestly did have a PhD.

I kept this whole scenario from my family (all except my husband), because I didn’t want to cause them additional worry. As a university professor, my brain is my life source and this could be devastating to me.

The GP ordered an MRI of my brain to check to see if I had a secondary cancer (a tumor in my brain) or large plaque burdens, which is indicative of early Alzheimer’s disease. Then my demented sense of humor took over. I thought to myself, “ Well, if I don’t have my cognitive ability, at least I have my body.” I busted out laughing when I realized that I don’t have that either with my leukemia diagnosis. Oh, life… What have you thrown my direction again?

My brain scan turned out normal with no vascular plaque buildup and no tumor. So what is the problem?!? Why was I having so many blonde moments? (Apologies to all my real blonde friends.) I thought that the impairment could be caused by stress.

When I mentioned the cognitive issues to my hemotologist/ioncologist at my appointment – almost as an afterthought – she had an answer. “La Verne, you’ve got chemo brain.” It doesn’t matter if one takes cancer drugs by vein or orally, the results are the same. This is known as PCCI (post-chemotherapy cognitive impairment) – changes in memory, concentration, and the way you think. Sometimes it is temporary. Sometimes it is long-term. Some symptoms of chemo brain are:

• Confusion

• Difficulty doing more than one thing at a time (multitasking)

• Forgetting things you normally remember (memory loss)

• Fatigue

• Difficulty finding the right word

• Difficulty calculating in your head

• Difficulty remembering or following the flow of a conversation (verbal memory)

• Difficulty recalling an image or a list of words (visual memory)

• Difficulty concentrating

• Difficulty learning new skills

• Short-term memory problems

• Taking longer and having to work harder to complete routine tasks

• Short attention span

• Mental fogginess

• Being unusually disorganized.

• Spatial ability (mentally rotating objects in space): I add this problem to the list, because engineers and technologists will be affected by this symptom in order to function at work.

Not everyone has all the symptoms.

A notable percentage of people who undergo chemotherapy experience some amount of cognitive impairment. Cancer research in the UK (http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/chemo-brain) show evidence that 17 to 50 percent of women with breast cancer treatment and 47 to 69 percent of men having prostrate cancer treatment have reported chemo brain. Research has indicated that symptoms improve within a year of ending cancer treatment, but for others it is long term. Scientists are also looking into how factors such as stress contribute to cognitive impairment. Another group of researchers is examining why an increase in cytokines, which are proteins made by the body during an immune system response, are higher in people with cancer treatment. They are also researching why the highest cytokine levels are found in patients reporting thought and memory problems.

This is what I have had to do to deal with chemo brain:

• Simplify my life

• No multitasking

• Function using TO DO lists

• Put events on a calendar

• Try to get enough sleep

• Do something physical

• Keep my mind active by writing, doing puzzles, etc.

• Paint and listen to music

• Reminder notes on my iPhone

• Repeat details back to people when arranging to meet with them and write it down.

This truly was one of the hardest blogs I have written, because it has to do with my brain. I like my brain. That is the one organ that has given me opportunities to teach at the largest and best research universities. It has given me meaning to life.

I often wonder if we are faced with all our fears before we kick the bucket. I have been afraid of needles since I was four years old. Two or three doctors in a German hospital tried to hold me down for a shot, after I screamed and gasped when I saw the HUGE needle they were going to use on me. I had just been diagnosed with pneumonia. I fought them off. I remember the IMMENSE Army nurse they called into the room. She wrestled me on the hospital bed and gave me a shot in the gluteus maximus. With a leukemia diagnosis, I am poked and prodded with needles more often than I care to be. I have just learned to deal with it.

Maybe this is another life lesson I will have to learn to deal with – chemo brain. I guess I will have to rely more on my heart, since that seems to be still ticking most days. :-)

Government Shutdown, Your Health, and American Innovation

NIH 7th floor lobby

NIH clinical trial waiting room

This is where I get my chi tea latte.

Main NIH lobby and gift shop

The main National Institutes of Health campus is home to the NIH Clinical Center, which is the largest hospital in the world completely dedicated to clinical research. About 6,000 scientists work in NIH’s Intramural Research laboratories mostly on the NIH campus in Bethesda, Maryland. More than 80% of the budget of NIH goes to innovative federal grants to over 300,000 researchers at over 2,500 American universities and research institutions. Federal grants for university professors and scientists have now been put on hold.

My blood brother George contacted me and was concerned that I would have a problem with my appointment at NIH, because I was scheduled to fly in last week during the beginning of the government shutdown and 75% of the NIH is furloughed or on forced leave. That means 18,646 employees got sent home with no pay. He was worried that I would have no nurse, no medical team, or no cancer drugs.

I went anyway. Wednesday, October 2nd, the NIH campus at Bethesda, Maryland looked like a ghost town. The lobby on the main floor was empty when I came in for my blood work. The café I get my chi tea latte non-fat vente was gated up, and the gift shop had no one working. I went up to the seventh floor lobby and it looked deserted. The waiting room for the clinical trials looked empty for quite a while. The only place on the entire campus that was open was the small second floor lunchroom. I was thankful that my furloughed nurse came in for my appointment and thankfully so did the medical staff.

Because I am enrolled in a clinical trial, I have the good fortune of being treated for the leukemia and having access to my drugs. Not so fortunate are those hundreds of patients finally entering the clinical trials, who are turned away every day at NIH during this government shutdown. In a week’s time there will be 200 sick patients turned away from clinical trials that could save their lives. About 30 of those patients are children with about one-third being children with cancer, according to an NIH spokesman.

This may help to make this point more poignant: 10,000 new patients enroll in clinical trials at NIH each year, because they are usually out of options. They are willing to take their chances with being a little white lab mouse and being exposed to experimental drugs and treatments, because standard medical treatments have failed. Now think about how they must feel being turned away.

I had dinner on Wednesday night with my cousin Sammy, who is an engineer working for NASA, and he just filed for unemployment. NASA has furloughed 17,451 employees leaving 549 working in the international space station and the Mission Control in Houston. HAVEN, a new robotic Mars probe is scheduled to launch November 18^th of this year at Kennedy Space Center. If the deadline is missed, the Earth and Mars will not orbit into the proper alignment again until 2016.

Oh, by the way, my white blood cell count has dropped from 29,000 to 19,000 – heading in the right directions. My platelets are a little lower than they should be, but not to worry at this point.

I am patiently waiting for FDA-approval of ibrutinib, which could save so many lives. I guess I will be waiting a little longer, since FDA just furloughed 45% of its 14,600 employees (6,620).

When I emailed my doctor when I arrived home to tell him about a side effect that I forgot to mention at our appointment, I received this email: