Have You Lost Your Senses?

Chemotherapy and radiation can have some pretty harsh, long-lasting side effects.  I have discussed chemo brain, depression, body image, and a range of other effects in this blog, but a larger attack on the system is the five senses: sight, sound, smell, touch, and taste.

One of the areas that I noticed a change almost immediately was my sense of smell.  I have always had an excellent sense of smell that actually saved my life once during a gas leak in my apartment. After chemotherapy, it escalated ten-fold! 

The first time I realized it was while I was still going through chemo and my mother had hard-boiled some eggs and set them in the fridge uncovered.  Later that day I opened the fridge and gagged, ran to the bathroom and threw up.  I have had the same reaction to that smell ever since!

Another instance while still receiving chemo was when a friend was cooking scallops with garlic and I could smell it from my room on the other side of the house. I had to stay in my room the rest of the night to avoid getting sick.

What is odd, is that after almost three years, this is still having an effect on me!  I can smell things from miles away, I swear! I can smell when there is a fire in the hills; when neighbors across the street are cooking something wonderful; and when the trash in our garage three floors down needs to be taken out!

The next sense that was affected immediately was my eyesight. During chemo, my sight went blurry and my eyes would water whenever I tried to read.  After chemo, my sight never did return to normal and I had to get reading glasses.  Three years later, my sight has deteriorated quickly and it is time for a stronger prescription.  

Next came my hearing.  Now, remember, during chemo you lose ALL the hair on your body not just on your head.  This means eyebrows, eyelashes, nose hairs and the tiny hairs in your ears that vibrate to pick up the sound. I literally went deaf for about a week. 

Today, the long-lasting effect is that everything seems TOO loud! When I am out and about in the city I feel like I am being bombarded with noise.  When at my computer I must use headphones so I can be in control of the volume. 

Then there are the taste buds.  I have been a pretty picky eater most of my life.  Texture plays a big part in whether or not I will like something as well.  During chemo, I preferred my food to be somewhat bland. I wanted savory, not sweet. I wanted smooth and creamy textures.

These days it is like I have a whole new appreciation for good food.  I acquired a taste for asparagus that I refused to ever eat before. I lost my appetite for fish altogether.  I prefer salty snacks over sweet ones.  Some foods simply have no flavor to me at all and I need to add salt or spices.

Luckily, for me, my sense of touch was not affected at all.  I did not develop neuropathy in any of my limbs or digits and for that I am grateful.  I have spoken to many survivors who say the tips of their fingers have lost feeling, or they find it hard to walk because they developed neuropathy in their feet.  

I find it so interesting that my sense of smell and my hearing were both escalated above normal, yet my sense of taste and my eyesight deteriorated.  I would love to hear from any of my readers how chemo affected yours, and which senses were changed the most!


Image provided by Pixabay.com 

Hairology 101

Going bald during chemotherapy is only the beginning of the cruel joke.  The punch line is when your hair starts to grow back and it is someone else's hair!  Where did these curls come from? Why does my hair now have a wave in it? What is with this thick dry texture? 

I used to have long, straight, silky hair.  Now, I have this thick wavy mop I do not recognize.  I have no idea what to do with it!  I realize this is really nothing to complain about, I mean, who doesn't want a nice head of hair? The problem is, I spent the past 47 years working with my old hair, learning it's nuances, finding out what it needed, and what cut it preferred.  

Over the past 3 years I have stared into the mirror, mouth agape, as this foreign hair flows from my scalp like some kind of alien.  I take brush and hairdryer in hand like a pro only to have it do the complete opposite of what I need it to do.  The harder I try to get the wavy parts to lie flat, they stick out even more just to spite me! I try to get my part on the side, it flips right back to the center and I swear it is mocking me! I have even gone the way of hair product, which I never needed before, to try and tame these coiled locks. Waste of money.  Spackling paste would do a better a job.

Initially I began asking everyone I could about this phenomenon, and the answers were all the same..."Oh that is normal, it will get back to your old hair in a few months!" While it is no longer "chemo-curls," that kinky curly or perm-like stuff, the wavy thick mass has stuck around like a bad habit.  So I soldiered on and let it grow out just past my shoulder blades. Yes, the curls turned into waves once the hair got heavier, but now I had what resembled a sort of bird's nest carpet! It literally bounced when I walked, and not like those pretty models you see in shampoo commercials either!  

As if the hot flashes were not enough, now this hornet's nest was making me so hot I could barely breathe, and it almost strangled me to death at night. It was like I had become Medusa and the snakes decided to rebel! Finally I had enough and decided to cut it all off again.  You see, in my naiveté, I thought if I did this, the new growth might be back to normal...not! Now it is just a shorter mop.

Aside from the waves and strange texture there is the color.  My hair came back darker than my natural color, and with more gray. And no, not salt and pepper gray that would look nice for my age, oh no, the gray came in the form of a bride of Frankenstein stripe dead center from the top of my head!  Trying to part the hair on the side is my way of hiding that stripe, so when it flips right back to a center part I know for sure it is mocking me!  

My new plan of attack is to let it grow to just between my jaw and my shoulder making it heavy enough to hold that side part.  Until then I am waging a war I know I can't win.  You know that old wive's tale about talking to your plants? Yes, in the mirror, I talk to my hair. I ask it why it is doing this to me.  I try to be nice and complimentary, even leave the conditioner in just a bit longer, brush it with love, to no avail.  As I stare at it, a stray hair will literally push it's way out in the wrong direction in complete defiance.  Resistance is futile...

That cruel joke I spoke of? Surviving breast cancer is the hardest battle to fight and win.  The aftermath is a complete loss of identity one must fight to find all over again.  We do not look the same in the mirror, from head to toe.  Everything about us has changed, both physically and mentally.  Our lives have changed. It gives us a chance to experiment with ourselves and try to find our new comfort zone.  I am still experimenting with the "new me" and while I have not yet settled in to this new identity,  I look forward to the journey.

The battle with my hair rages on...

Image provided by Pixabay.com

Generation Chemo Brain

As the brilliant comedian George Carlin once said "That's the whole meaning of life isn't it? Trying to find a place for your stuff!" 

Having chemo brain is like trying to fill a storage unit with too much furniture; you have to get rid of some stuff to make room for more stuff. For me, the stuff I am forced to give up are my short term memory, word recall, attention span, concentration and multi-tasking.  I have started referring to this as having ADHD-OCD. And I am not even a Virgo! (that joke was for my Mother).

Before my diagnosis I was a multi-tasking maniac!  I could have an entire conversation without struggling to find the word I was looking for.  I had put myself back in college at 41 years old and was a master of the essay.  Once I began treatment I had to take a five month break from classes because it was so hard to retain information, read, or write, and my GPA was at risk.  Needless to say, I only attained my Associate Degree because I ran out of funds and the brain power to continue to the Bachelor Degree.  Life changing.  Sad.

The Mayo Clinic website describes the term chemo brain as "...a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment."  They go on to say... "Though chemo brain is a widely used term, it's misleading. It's unlikely that chemotherapy is the sole cause of concentration and memory problems in cancer survivors. Researchers are working to understand the memory changes that people with cancer experience."

Some people have suggested to me that it must be a combination of several other things such as the stress of a cancer diagnosis; medically-induced menopause; hormonal changes; related fatigue and/or insomnia; and medications.  All I know is my brain has not been the same since.  

This has forced me - and many others - to change the way we think and work.  Some have started to journal, others keep post-it notes all over the place.  Using the calendar function on my cell phone has helped me remember appointments by setting up the alerts to remind me a day or two in advance.  I kept showing up to appointments either at the wrong time or the wrong day entirely, and it was really starting to worry me.  With Alzheimer's in the family, it was a growing concern.

Enter friends and family.  We start to pull away because we find it harder and harder to communicate. The funny looks as we stumble around for the right word or forget what we were talking about all together, is almost too much to bear.  Facebook? Forget it!  I would scroll past about 3 or 4 posts and lack the concentration to keep going.  Isolation.  It is never intentional, but inevitable when you grow tired of trying to explain your chemo brain to everyone.  We start turning down invitations to socialize because we do not want to embarrass or humiliate ourselves. Well that, and in my case the fact that I only have one breast and am suffocating in my self-loathing.

I implore anyone with a friend or family member dealing with cancer to be patient.  Yes, coming from the queen of impatience this makes me sound like a total hypocrite but I am being serious here. A little patience and understanding goes a long way with us. Hey! If you know that word I am struggling to come up with, just blurt it out, I could use the help! You have no idea how many times I had to stop writing this post to look something up on Dictionary.com! Writing about chemo brain, while having chemo brain...priceless.

These days more and more people are surviving cancer than ever before.  This presents a new opportunity for the research community.  We have spent the last few decades researching a cure, while ignoring the cause. Now we need to focus on the long-term side effects from treatment that survivors are dealing with.  

Speak out. Talk to your doctors.  Talk to other cancer survivors. Read.  

❕ Let's start a movement before we forget what we were talking about ❕

Image provided by Pixabay.com