guest blogger, Side Effects

6 Things I wish I knew before I started Chemo

By Taylor Eames

Most cancer treatment centers require you to go through a brief “chemo class” to learn about possible side effects.  However, having been through both the class and six months of chemo, there are some things you just don’t expect to happen.  Upon hearing that my treatment plan included chemo, I automatically pictured baldness and vomiting like it is in the movies and tv shows.  But it wasn’t how I imagined it at all.  Here are some things that surprised me.

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Chemo sucks.

Think car sick, morning sickness, and a hangover all in one.

The nausea is constant and it’s pretty debilitating at times.  But in my experience and from what I’ve heard from many other survivors, vomiting is rare.  You just feel crummy all the time.  Anti-nausea meds help for some patients.  Others just find the feeling to become a new normal.  But I’ll remind you, and I’ll say this again later on, this “new normal” is temporary.

When they say, “You’ll lose your hair,” they mean all of it.

Chemotherapy targets fast growing cells in your body in order to kill the growing tumors.  Hair, nails, intestinal track, and even brain cells are all collateral damage along

the way.  One of the most noticeable side effects is hair loss.  I went from having a thick, full head of hair down to my shoulders, to nothing at all.  But what I didn’t expect was that the hair on top of my head was only a starting point.

It will happen later on in your chemo cycles, but soon you will lose your leg hair (yay, no more shaving!), your pubic hair (this one was kind of weird), and even your eyebrows and eye lashes (more noticeable and somewhat sad).  Don’t forget, it’s all temporary.

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Bye bye, eyebrows and lashes.

 

Chemo hurts.  (And so does Neulasta.)

I remember my chemo class nurse saying these exact words, “Some people experience some discomfort and bone pain during treatment.”  It was so nonchalant that I blew it off thinking it wasn’t very common, and if it did happen, it wasn’t really serious.  But, oh my gosh, I was wrong.

Chemo is attacking white blood cells just like it attacks hair follicles.  Neulasta is an injection used to boost white blood cells development during chemo so you aren’t as susceptible to infection.  The battle that ensues is painful…seriously painful.  It feels like pin pricks but deep in your bones. The pangs of pain come and go all over your body.  For me, my feet, ankles, shins, ribs, and jaw hurt so bad that I couldn’t walk at times, and I ended up on heavy opioid pain meds for the 3-5 days that I experienced the pain.  Do not be afraid to tell your doctor that you need something to help you through this.  If one med doesn’t work, ask for something else.  And remember, this is only temporary.

You will take more naps than you did as a child.

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Sometimes when I couldn’t get out of bed, my daughter joined me.

The fatigue is real, and it’s something you just need to give in to.  As I said, chemo is attacking your body while fighting off the cancer cells.  As in any battle, your soldiers get tired. You need to allow your body to rest so this battle can be won.

I spent a lot of time sleeping.  There was one day in my third cycle that I slept for almost 21 hours in a day.  I remember calling the chemo nurse concerned that I had slept so much.  They did blood work to make sure nothing serious was going on, but when it came back as normal, she said I just needed the sleep.

Even when you are awake you can feel how exhausted your body is.  There were times when simply getting up from bed to walk to the bathroom tuckered me out.

You may gain weight.

When I first heard chemo, I remember saying, “This will be the most expensive weight loss plan I’ve ever taken part in.”  I was wrong.  While doing chemo, you also have to take steroids.  Steroids make chemo more effective, help reduce allergic reactions, and can be used as an anti-nausea medication.  Steroids also make you ravenously hungry.

Unless your doctor decides to use steroids for your nausea, you will most likely have to take it the day before, the day of, and the day after infusion, and you’ll probably get one in your premeds before the chemo is infused.  Because of this, you will feel great for the first and second day of your cycle.  (The nausea, fatigue, and pain will start on the third day.)  During the steroid bursts, you will experience sweating, insomnia, and as I said, veracious hunger.  I remember the day after my first chemo infusion we went to Red Lobster to celebrate my mom’s birthday, and I wanted to eat everything on the menu!

It’s only TEMPORARY!

Chemo sucks. I’m not going to lie about that.  But it’s doable.  You have to keep remembering that the cruddy feeling you are experiencing for 3-6 months is not going to last forever.  You may be scared, you may be thinking the worst, but you are stronger than you think you are.  Each cycle will fly by and soon your new normal will become part of the past.  I look back at it and remember the side effects—nausea, fatigue, pain—but it really wasn’t as bad as I was expecting it to be, and even knowing these things, I know I would do it all over again because it helped me kick cancer’s ass.  If you are facing chemo as part of your treatment program, you can do it!

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I did it! So can you!

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Taylor Eames is a single mom of four living in Yuma, Arizona, who was diagnosed with triple negative invasive ductal carcinoma in January of 2016.  She openly chronicled her experience during treatment and continuing through the aftermath on TaylorTough on Facebook.  Taylor is one of the founders of Breast Cancer Sisters along with her dear friend, Kristy Irizarry.

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guest blogger, Side Effects

It’s Just Hair

By Taylor Eames

Facebook memories are a wonderful thing, aren’t they?  A few days ago, it reminded me that I lost my hair a year ago.  I reread what I had written that day, and tears came to my eyes as I remembered the emotional impact this moment in my life had on me.  Let me share what I wrote on April 8, 2016:

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“Last night, kind of suddenly, my hair started coming out in fist fulls.  I went from having a firm grip on my hair to it coming out so easily almost within minutes. It hit me hard. The thought of waking up and finding clumps of hair on my pillow gave me an anxiety attack. So we did what most do during this phase in chemo and shaved it off. It was a very heartbreaking moment in this journey. I never expected it to affect me that greatly. Yes, it’s only hair and it will grow back. But I feel a huge part of my femininity was taken from me. Also, everyone’s looks change drastically when their hair changes. I wept as my mom took the clippers to my head. Actually we all did. My mom cutting my hair, my sister on skype [in San Francisco], Annie [my daughter] (who’s in Michigan visiting her dad) also on video chat. We all just cried. We had joked about the shaving of the head being a fun occasion, but it wasn’t. It was like mourning a loss. Yes it’s only hair, yes it will grow back. But it still hurt me to the core. It will take some getting used to. Eventually it will be the new normal. Maybe later, after I get up for the day, shower, put some makeup on, and don a cute hat, I’ll shar
e a picture. But I have to allow myself to feel the full gamut of emotions or I’ll implode.”

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I remember after the shave, I went to my room and cried some more.  Then I didn’t want anyone to see me for a while.  I hid in my room as my family continued their lives.  Finally, the next day I was forced to emerge from my solitary sanctuary and rejoin society.  This time as a bald cancer warrior.  Now I wore my badge, now everyone knew I was fighting cancer, I was getting chemo.  Now people looked at me differently.  Some with pity, some with admiration, and some with wonder.  Some stared, some purposely would not make eye contact.  And then there were the ones who boldly asked where I was in treatment and how I was taking it.  I didn’t know how to react to that.  Was it rude of them to ask or was it nice of them to make conversation with me and treat me like a normal person?  I guess I didn’t have anything to hide, so I was glad to talk to people instead of getting strange looks.

Later on in treatment, I was at a waterpark with my family.  I wore a cute floppy bucket hat for the most part because chemo makes you more susceptible to the sun, and my bald head was sensitive.  But we live in Arizona and this was the end of July where temps average 115 from day to day.  At one point, I was laying in a wading pool watching my kids play, and I decided to take my hat off because it was making me sweat.  (Don’t worry, I was slathered in sunscreen!)  It only took a few seconds for kids to start looking at me strange. Eventually, one little girl splashed up to me and said, “Why your hair like that?”  My daughter protectively said that I have an illness and the medicine makes my hair fall out.  She looked at me with concern and said, “You ok?”  I smiled and said, “Yes! Thank you!”  That satisfied her curiosity.  She smiled back and she happily splish splashed away.

I lost my hair in April, and it barely started growing back in September.  I kept my head covered in public with hats or bandanas until December.  Like I said, I didn’t think not having hair was going to affect me so much, but it does change everything about the way you look and the way people look at you.  I wasn’t comfortable braving the bare look outside of the home, but others are.  Some do just fine with the shaving of the head, some even celebrate it.  And some mourn the loss, like I did.

Whatever the reaction to losing your hair, it’s yours.  No one can understand what you are going through unless they have experienced it themselves.  Yes, it will eventually grow back, but the fact is your look is changed for at least 2 years.  It’s not just hair.  Regardless of how you handle it, just remember you are braver than you know.


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Taylor Eames is a single mom of four living in Yuma, Arizona, who was diagnosed with triple negative invasive ductal carcinoma in January of 2016.  She openly chronicled her experience during treatment and continuing through the aftermath on TaylorTough on Facebook.  Taylor is one of the founders of Breast Cancer Sisters along with her dear friend, Kristy Irizarry.

collaborative post, Side Effects

Like Swimming through Honey

This post is a collaborative effort from the members of Breast Cancer Sisters compiled by Taylor Eames.

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Submitted by Jane B.

 

Is “Chemo Brain” real?

If you ask the Mayo Clinic, they 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.¹”  In fact, they mention many other conditions related to cancer and its treatment, such as stress, anxiety, fatigue, infection, insomnia, and even brain cancer, to try to explain the phenomenon.

But upon posing this question to our support group, Breast Cancer Sisters, the answer was an emphatic YES!  Thankfully, the Mayo Clinic is hearing the outcry from the foggy minds of cancer survivors.  They are acknowledging that “it’s clear that the memory problems commonly called chemo brain can be a frustrating and debilitating side effect of cancer and its treatment.¹”  Researchers are doing more studies on the subject.

Chemo Brain is characterized by our group members as a fog.  Cori K. was describing her experience with multiple sclerosis in one post saying her brain function at times was like “swimming through honey.”  I immediately thought that was a perfect way to explain exactly how my thought process has been since I went through chemo last summer.  About halfway through my treatment plan, I was trying to introduce someone to my daughter, and for the life of me, I could not remember the other person’s name.  It was incredibly embarrassing, and I felt like I made my friend of a few years feel as though she were not special to me because I could not recall her name.  Shortly after that, I was trying to remember our zip code and numbers floated around in my brain with no rhyme or reason.  I could see the numbers, I could reach for them, I know they were there, but I just could not get to them. The same often happens with our regular vocabulary. Fellow breast cancer warrior, Linda L. says, “I describe it like my brain is in a blender, and the words are swirling around.  I know what one I want, I just can’t grab it.”  I brought up the concern to my oncologist.  He acknowledged that I was having memory issues but refused to admit that it was caused by chemotherapy.

As I said above, our members believe otherwise as they hadn’t suffered from these problems prior to treatment.  Many of our members report forgetting names of family and friends and numbers they’ve known for long periods of time, stopping mid-sentence unable to remember what they were speaking about, or not being able to reach words in their muddied brain.  Below are some of the funnier moments our members have mentioned.

“During chemo [I] was on my way to work (bald) and thought I might have left the curling iron on.  And a few months back I did this (picture below)”–Kelly N.

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“I was just on the phone with my doctor and they asked for my last four digits of my social security number…can’t remember it at all!”–Jane B.

“[This is] one of my greatest frustrations as I always had a photographic memory.  I work as an assistant principal and my campus supervisor always tells me, ‘You had a super power.  Now you are a human like the rest of us.'”–Christine A.

“[I] was asked for my address and had to look at my driver’s license!!”–Sue H.

“I almost made kitty treat tea instead of real tea and it took me hours to figure out we were out of tea!”–Lynn R.  (picture below)

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“I forgot the chili powder for the homemade chili I am making.”–Jennifer G.

“I totally had chemo brain this morning.  I was walking out the door to run some errands and forgot to put on my shoes.  Good thing I didn’t get far, my feet got cold!”–Amy C.

“I literally called the PA at my oncologists office to ask a question, totally expecting to leave a message and she picked up.  And the question jumped right out of my head.  I had to hand up and call her later that day.”–Kristy I.

“When I was having my chemo treatments, I ended up forgetting, of all things, my husband’s birthday.”–Anna R.

“I left an $80 tip to a server last week and the bill was $220.  I’m sure she was happy, not sure how it’s going to look on my expense report.”–LaChelle M.

Now that we have established it is real even though the Mayo Clinic doesn’t believe it, here are some suggestions from our members on how to combat the foggy brain.

  1. Make lists.  Use your phone or a small notepad to create a to-do list for yourself and carry it with you everywhere.  Check off things you have done and add things you need to do any time you think of them.
  2. Set reminders on your phone.  I personally have 4 reminders on my phone daily just for my medications.
  3. Play memory games, read books, play Words with Friends, etc.  Anything you can do to work your mind can help restore your brain function.
  4. Keep a GPS in your car or use your phone.  Many of our members have mentioned getting lost when driving or walking.  If you keep your phone with you, you’ll be able to use it to find your way back to where you came from.
  5. Ask friends, family, and co-workers to be patient with you.  You can even ask them to help you out when you get stuck.  Explain why in advance so they understand.  Ask for vocabulary help or to remind you of people’s names.
  6. Sticky notes can be your best friend!
  7. Proofread twice!  Check over messages to make sure you didn’t misuse or misspell any words.
  8. Repeat information out loud.  I often say people’s names over and over again when I meet them so I don’t lose the name.  Sometimes saying something out loud, in your head, and even writing it down all at the same time will help yor remember something.
  9. Minimize distractions.  The more you can concentrate, the easier it is to remember things.  If you are used to being able to multitask, it may prove to be more difficult now.  Go easy on yourself if you aren’t able to do it any longer.
  10. Get plenty of sleep and rest.  A rested brain is a happy brain.
  11. Talk to your oncology social worker or a therapist.  This can be embarrassing and you need to work on accepting it.  Talking to a professional can head off any anxiety or depression you may develop.
  12. Stay organized.  Use calendars or planners.  Clutter can make your brain confused.
  13. Take breaks.  This is hard on you, and it’s exhausting to concentrate so hard.  Give your mind a rest now and again.

Lastly, remember you are not alone.  When I posted this topic in our group, it received over 100 comments in 6 hours time.  It was cathartic to relate and laugh at each others’ comedic stories of memory loss.  Join our group and laugh with us too.

….now, what was it I was talking about?

¹ Mayo Clinic Staff Print. “Overview.” Mayo Clinic. Mayo Foundation for Medical Education and Research, 15 Jan. 2016. Web. 17 Mar. 2017.


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Taylor Eames is a single mom of four living in Yuma, Arizona, who was diagnosed with triple negative invasive ductal carcinoma in January of 2016.  She openly chronicled her experience during treatment and continuing through the aftermath on TaylorTough on Facebook.  Taylor is one of the founders of Breast Cancer Sisters along with her dear friend, Kristy Irizarry.