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.

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It’s Okay to Not Be Okay

By Taylor Eames

When my psychiatrist said “Post Traumatic Stress Disorder,” I was kind of stunned.  There was not one major, impactful incident that had happened in the last four years that could cause what I was feeling.  In fact, there were several things that happened–a painful divorce, moving, caring for my mentally ill son, a cancer diagnosis, moving again.  I didn’t realize that these life events had compounded together to cause some deep depression episodes and debilitating anxiety attacks.

I finished treatment in August of 2016 and had surgery in October.  I got the glorious news that my path report said “no evidence of disease” shortly thereafter.  My hair was growing in.  I was no longer constantly nauseated, and I was gaining my energy back.  It was over.  Now it was time to move on and be healthy.

But I couldn’t.

The moment the surgeon read the path report as no evidence of disease, I thought I would be elated.  But the truth was I barely believed him.  I didn’t smile, I didn’t cheer.  I just didn’t care.  It was reminiscent of when I received my diagnosis actually. “I’m sorry to have to give you this news, but the biopsy indicated malignancy.”  I stood there staring into space, not feeling a thing.  It took several weeks for me to even cry.

The same happened here.  The cancer was gone. but I couldn’t feel any joy.  I couldn’t find it.  I had shared my journey so far on Facebook pretty openly and often in real time updating almost immediately when something would happen.  I hesitated to share this news.   It was like there was a wall in front of me, and I couldn’t step forward.

Then the nightmares started.  Scans that lit up like Christmas lights.  Phone calls from doctors saying they made mistakes.  Chemo again.  Nausea again.  My hair falling out again.  The pain.  I’d wake up covered in sweat, then I’d be unable to sleep.  I’d spend hours in the middle of the night occupying my mind with fluff online just to get the obsessive thoughts out of my head.

I began having deep depressions.  No one really knew about them though.  I have always been able to hide them from everyone else.  I’m a single mom so when I fall, the whole family falls.  I was sick for the better part of a year so I could’t let the depression overcome and disrupt my life, their lives.  I’d go to bed when the kids went to bed, and I would cry. I’d just lie there and cry.  I couldn’t understand why I was so scared now that I was well.  I didn’t know how to move on. I was stuck.  And it hurt.

I got a call in January that my oncologist was referring me to the survivorship program at the Cancer Center.  Survivorship.  So they were going to teach me exactly how I am to be a survivor?  Good, I needed that.

I went to the appointment and the nurse practitioner asked me how I was doing. I said my normal, “I’m fine.”  And she just looked at me.  I knew, she knew I was not fine.  I cried.  I told her everything.  She just sat there and listened intently for a good 20 minutes I’m sure causing her next appointment to run late.  She knew I desperately needed help finding my way and just let me sit there and get it all out.  The best part was that she didn’t interrupt me.  She just let me go and go.

When I was finished, she said she was proud of me.  She said this part is almost as hard as the treatment.  Moving on afterward, facing the future with doubts and fears, not knowing what to do next, it’s difficult.  Everyone expects a cancer survivor to be glad it’s over and see joy in a future of health.  But when those feelings don’t come, it’s common for the survivor to struggle in surviving.  Survivors don’t know that it’s okay to not be okay.

The nurse practitioner decided to send me to a psychiatrist.  I have a history of bipolar disorder and already take psychiatric medication so adding on to them was something she wasn’t comfortable handling.  I agreed.  In fact, changing or adding meds scared me quite a bit.  I had been on the same med regimen and been stable for the last 6 or 7 years.  I felt like this was more an environmental problem than a chemical problem.  But the fact was I was drowning in my own emotions and needed some help, even if that meant adjusting my medications.

I talked to the psychiatrist about what was going on.  He asked me questions about my life before cancer and how I coped with everything going on in my life.  She said that the amount of trauma I had experienced in the last four years is more than many face in their lifetime, and he wasn’t surprised I was now falling apart.  He said I tried to be strong too long, and it was time to give in.  I breathed out a sigh of relief.  I was keeping myself to a standard that was clearly too high for anyone, not just me.  And I needed someone to actually say that.  Again, it’s okay to not be okay.  My new mantra.

He ultimately ended up adding an antidepressant/anxiety to my medications.  It’s a low dose, but within a week or so, once I got past the initial adjustment period, I felt a difference in myself.  He also referred me to a psychologist for therapy.  He said it wasn’t healthy to keep it all in the way I had the last several years.  He said that it’s okay to be strong for my children, but I need to be weak for myself every now and again.

This is a part of treatment that isn’t really talked about.  But your mental health is as important as your physical health.  It is okay to be scared of the future.  It is okay for you to fear that the cancer will return.  You are not the only one feeling that way.  You need to let your doctor know when you are struggling, when you can’t get past those feelings.  Your mind is part of your body.  You need to take care of it too.


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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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Dear Caregiver….

Dear Caregiver,

You are my rock.  This fight is hard.  It’s taking everything out of me.  But you are there for me through it all.  You help me when I’m sick.  You let me sleep when I’m weak.  You take care of my home, my kids, cooking, cleaning, and more.  I could not fight this battle without your love and support.

I want you to know a few things.

I used to be able to do everything for myself, and now, now I am a shell of who I used to be.  My body is constantly in a fight for its life.  I’m tired.  I want to be up and able to take care of myself.  I want to take care of my home and my kids.  I want my life back.  I may be grumpy and snap at you now and again.  Please remember not to take it personally.

You may not know it, but I’m jealous of your health.  I don’t like to say that because its not your fault I am sick.  I don’t blame you in the slightest.  But I am jealous that you get to go out and have a life.  I know you need more than just taking care of me, but I miss being normal.  I may seem ungrateful when I voice this need.  Please understand it’s not your fault.

Make me laugh.  Take me away from the pain and sickness.  Help me to forget the worries.  Rent a movie, be goofy, sit in my bed and enjoy my company, make jokes. I need to not take life so seriously sometimes, especially when this illness makes it serious.  Please laugh with me.

Let. Me. Vent.  I am sad.  I am frustrated.  I am angry.  I am scared.  I need to cry, and you need to not judge.  Hold me.  Don’t tell me that I’m going to be ok.  Don’t make false promises.  Just hold me.  Love me.  Be there for me.  Let me tell you what I feel.  You don’t need to say anything.  You may be uncomfortable with this, but I need to do it.  Just let me talk.  Cry with me.  I know you are scared too.  Please know it’s ok to show it.

I want you to understand what I am going through, but realistically, you never will.  And I won’t understand what you are going through either.  But we need to try.  We need patience with each other.  I’ll try my best.  But remember what’s going on inside my body.  Everything is coming together, and I am overwhelmed.  I may forget that you have needs too.  Please be patient.

Remember when I am up and moving, even when I am given the news that I have “no evidence of disease,” I’m still fighting on the inside.  I need you to trust that I know my body and mind, and I can tell you when your caregiving is not needed anymore.  Let me tell you that I can do the laundry, that I can care for the children, that I can clean the house, but also let me tell you when I am tired, when I just need to rest.  Also, remember that this intense treatment takes a toll on my mental health as well.  I need you to understand that even though I may be “NED,”  I’m still scared.  Every new health concern from here on out will remind me that cancer can return.  Please trust me.

Most importantly, I want you to know I am grateful.  You keep me going.  You give me a reason.  You do what I can’t.  And for that I say, “Thank you!”

With all my Love,

Your Breast Cancer Warrior

Photo Credit:  Linda R. Martin and daughter


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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, resources

Helping Your Favorite Breast Cancer Warrior

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

Once the breast cancer diagnosis is shared with friends and family, one of the most common things we hear is , “How can I help?”  or “What can I do for you?”  It’s difficult for many women to accept that they need help let alone to ask for it.  So I posed the question in our group asking what our warriors would have appreciated in care packages and what services their support system could do to take away some of the burden of a cancer diagnosis.

For Side Effects:

  • Hard Candies/Anti-Nausea Pops or Drops/Chewing Gum-Chemotherapy often causes nausea and can also leave a bad taste in the mouth.  Citrus, ginger, or mint are helpful for both of these side effects, but feel free to get something you know your fighter will like.
  • Head Coverings-Hair loss is imminent.  There’s really no getting around it with the types of chemo that are used to combat breast cancer. Talk with your warrior to find
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    “Jules” from ChemoBeanies.com
    out what kinds of head coverings they would want to wear.  Wigs are available for free through the American Cancer Society, but you can always offer to purchase a gift certificate to a wig store nearby so they can pick out something in their preferred color and style.  Bandanas, silk scarves, bucket hats, beanies, baseball caps, and other styles are all up to the wearer’s preference.  A popular option in the group is ChemoBeanies.com.  If you are planning to hand make hats, please remember that bald heads are quite sensitive.  You should use soft cotton, fleece, or silk.  Homespun yarn is a good choice for crochet or knit hats.
  • Lotion-Chemo and radiation both cause skin irritation.  Remember strong smells can make nausea worse, so we recommend sticking to unscented or sensitive lotions.  Eucerin and Aquaphor are fantastic options.  If you do go with something scented, lavender is soothing and peppermint helps with nausea.
  • Ointments-Radiation can leave burn marks on the skin.  Our members have suggested 100% Aloe Vera, Bepanthen, Aquaphor healing ointment, bees wax, Miaderm Radiation Cream, and Medline Skin Remedy.
  • Salt-This may seem weird but it’s going to show your fighter that you did some research!  Chemo patients often lose all sense of taste and/or they have a constant metallic taste in their mouth.  One of the things most often suggested to anyone complaining of not being able to taste food is salt.  Plain old table or sea salt!  From baked chicken to mashed potatoes to veggies, we cover it in salt and finally are able to taste something.
  • Plastic Utensils-This is another strange one, but believe me, it’s helpful.  Like I said above, chemo causes a horrible metallic taste.  Using regular metal forks and spoons makes it worse.
  • Biotene Mouthwash and Soft Tooth Brush-Another unpleasant side effect of chemo is sensitive gums and mouth sores.  The soft tooth brush will help massage the gums when they are sore without causing more issues.  Biotene is an excellent mouthwash that oncologists recommend to their patients who are experiencing mouth sores.
  • Baby Oil/Coconut Oil/Baby Shampoo-With hair loss, cancer patients’ heads get very sensitive.  We still wash our noggins even though we don’t have hair.  Using a gentle shampoo and then massaging oil into the scalp helps bring down the tenderness.
  • Sun Screen-Chemo causes a sun sensitivity.  I remember getting burnt after just being outside for ten minutes without any sunscreen on.
  • Claritin-Neulasta, a shot that is given to boost white blood cells, causes major bone pain.  For some reason, Claritin seems to help with that pain for a few people.  Everyone should at least try it before having to rely on heavy duty pain meds instead.
  • Imodium/Flushable Wipes-Here’s an embarrassing fact that you probably don’t care to know: chemo causes diarrhea.  Chemo nurses recommend Imodium.  And the flushable wipes help with the sensitive skin when frequent potty breaks are needed.
  • OTC Medications-Tylenol, Benadryl, Melatonin, Colace, all useful during chemo.
  • Fuzzy Socks-Neuropathy from chemo causes chilly tootsies.
  • Soft, Warm Blanket-Heat and cold tolerance is all sorts of messed up during treatment.  A nice cuddly blanky is a loving gesture too.
  • Hand Sanitizer-Germs are the enemy.  Chemo kills white blood cells.  Washing hands after touching grocery carts or money, after shaking hands, or when someone around you is sick, are essential parts of infection precaution.
  • Pill Case-Anti-nausea, steroids, pain meds, hormone blockers, etc.  Meds are taken all day every day.  So something to sort them out is helpful.
  • Calendar-Chemo often causes memory issues.  Chemo brain is a real thing.  With the many appointments that go along with treatment, a calendar all help keep them organized.

Post Op Items:

  • Button Up Jammies/Spacious Night Gowns/Robe-After a mastectomy, the arms cannot be raised for at least a week, and after that, it is often difficult and range of motion is limited.
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    Drain Tube Lanyard and Pocket Pouch from PostOpSolutions.com
  • Drain Tube Pouch/Apron-Your fighter will most likely come home with at least one drainage tube.  It’s best to allow gravity to work with these tubes, so keeping them in pockets at waist level is advised.
  • Drain Tube Lanyard-This is great to hold the drain tubes while showering
  • Heart Pillow/Small Pillow-Placing a pillow under the arm after surgery is essential.  The nerves are extremely sensitive under the arm.  It feels like a severe sunburn.  I kept a pillow under both arms for about three weeks.
  • Ice Packs-Along with the pillows under the arms, ice packs also help sooth the sensitive skin.
  • Seat Belt Pillow-The seat belt goes right over the incisions and can irritate sutures.  A seat belt pillow can just be a small pillow that sits between the seat belt and the chest or one that wraps around the seat belt to protect the chest.
  • Slip On Shoes or Slippers-Again, it’s difficult to move the arms after a mastectomy, and frankly, it’s hard to move all together.  So being able to step right into your shoes with out having to bend over to put them on is very helpful.

Services:

  • Freezer Dinners/Set up a Meal Train-If you know someone going through treatment or surgery, or someone just diagnosed or feeling overwhelmed with life and stress caused by the diagnosis, make a meal and bring it over to their house.  I cannot tell you how much that will mean to them.  You can also set up a meal train at mealtrain.com.  Basically, you set up a schedule for others to bring in meals to the family in need.  This is especially awesome for single moms!
  • Cleaning-Either go to your warrior’s home and clean their bathroom or kitchen, or hire a maid to do it for them.  Even if it’s something simple like cleaning a toilet or vacuuming the hallway, it’s extremely helpful.
  • Babysitting-Chemo, radiation, and surgery are all exhausting.  Invite your fighter’s kids over for an evening or to do something special.  It will give your patient time to rest without worrying about taking care of the children, and it will make the kids feel special.  Mom is going through something rough right now and is probably getting all the attention.  The kiddoes need to feel some love and normalcy during this hard time.
  •  Gift Cards-Restaurants, gas, iTunes, Red Box, Massage, Spa, Barnes and Noble, Amazon, etc.  Anything that will take you warrior’s mind off the fight is very helpful.

Fun Things:

  • Word Search Books
  • Crossword Puzzles
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    Adult Coloring Page from ValentinaDesigns.com
  • Books
  • Movies
  • Crocheting Hook or Knitting Needles and Yarn
  • A book about how to crochet or knit
  • Adult Coloring Books and Colored Pencils or Markers
  • A stuffed animal to be their mascot during treatments
  • Random Texts to Show you Care
  • Comic Books
  • Journal
  • Headphones
  • Audio Books
  • Sketch Pad
  • Send silly Snapchats
  • Go to their infusion and make fun videos together
  • Sudoku Books
  • Share a silly meme on their Facebook page just for the heck of it
  • Send a card.  Not a sympathy card.  A funny card.  Something that will make them smile.

The most common things requested are support and prayers.  Go do some research about their type of cancer and their treatment plan.  The more you know, the more you can be there for them as they go through this battle for their life.  If you ever feel awkward asking them what they need, ask a close friend or family member to give you a specific thing to do that will help them out.

Lastly, you should know that the battle does not end with “no evidence of disease.”  Some side effects can become long term.  Anxiety about future health issues and possible recurrence is often quite prevalent.  After spending a year or longer in treatment, suddenly being done being a professional patient feels strange and empty.  Your warrior is going to need you now as much as ever.  Check in often.  Make sure they are taking care of their mental health as well as their physical health.  Continue to give them the love and support they need to reenter a normal life.

Do you have anything to add to this list?  Feel free to comment with more suggestions!

 

photogrid_1489558558749.jpgTaylor 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.