I’ve been avoiding this post for a few days now. Initially I decided I would wait until afterwards but I said I wanted to blog about my journey, not just the beginning and ends of each part of the story. The stuff in the middle is what makes the story what it is. Kind of like an Oreo. Gosh, that sounds amazing right now. I could probably write an entire post on Oreos right now…I digress. One thing I’ve learned from this whole experience is that cancer looks different for everyone. Not all chemo is the same. Not fun fact: the chemo I take is in pill form and I take it before bed at night. I had no idea that that was even a thing until it happened to me. I assumed everyone got chemo in the arm. But the pill form is the only one that can cross the blood brain barrier so lucky me! Really though, I do consider myself lucky in that aspect. It’s supposedly one of the “lesser of evils” when it comes to chemotherapy. It doesn’t make you lose your hair like others and because I take it at night, I’m able to sleep through most of the side affects. Don’t get me wrong, it’s not a walk in the park. It could just be worse.
So my chemo doesn’t cause hair loss. Unfortunately, radiation does. Another thing I didn’t know until I was on this side of it. Since I’m halfway through radiation, the hair is starting to fall. It’s been happening for about 4 days now and every day it gets worse. It’s “supposed” to only come out at the site of radiation but my site is a circle around my head soooo. I have tried just not touching my hair because if I don’t touch it, it won’t fall out right? Wrong. Instead I just have hair falling out AND my hair looks terrible because I haven’t brushed it. It’s been hard though. Way harder than I thought it would be. And I hate to even admit that. It makes me sound vain and weak. I want to be one of those strong women who embraces it whole heartedly and just doesn’t care. The truth though is that over the past few days I’ve shed tears over hair. Reading that last line out loud is laughable. It’s hair. And hair grows back. But people look at me now and they say “Wow! I would have never known. You look so…NORMAL!” I look normal. Which implies that when someone with cancer loses their hair, they don’t look normal. And that is just a tough pill to swallow. If I lose enough hair that I have to shave my head (which I am mentally preparing myself for) that also means I can’t hide the fact that I have brain cancer anymore, at least not all the time. The incision on my head is a dead giveaway that it’s my noggin. I really wasn’t planning on writing about this yet but it’s so raw right now and I don’t want to forget this moment, as much as I may dislike it.
I’ve been praying for peace about it all over the past few days and the Lord blessed me with that. A friend posted some bible verses on my Facebook and when I read through them, I almost burst into tears when I got to this one.
“It is not fancy hair, gold jewelry, or fine clothes that should make you beautiful. No, your beauty should come from inside you –the beauty of a gentle and quiet spirit. That beauty will never disappear and it is worth very much to God.” — 1 Peter 3:3-4
God knew I needed that. Sure, I’ve heard Michael tell me a million times that my hair isn’t what makes me beautiful (and I love him for that). But I needed it to be in the Bible to believe it apparently.
Since that moment, I’ve been handling it much better and I’m not as scared of it as I used to be. I still have no idea what to expect with it all and I’m not enjoying it, but it’s all a part of the experience and maybe now I can get some hair that actually makes me look like Sarah’s Mom! I’m praying it can last me through this weekend for my amazing best friend’s wedding but if not, I did say “I may be bald and puking but I’ll be there!”
Faith, Hope, and Love 
Oh my this is one of my worst fears. I can only say your friend who wrote you the bible verse from 1Peter was actually listening to the Holy Spirit as He knew you needed to hear this verse and be reassured. God is so good He even had this in place for you to hear at just the right time. Praying for safe travels to your friends wedding. No matter what happens with your hair just remember how beautiful you really are. God bless
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Stephanie, I just really, really love your openness. And that you write so well, and have so much to share! Thank you so much for being you! You are handling this so well and of COURSE it is upsetting to find that you are losing your hair…so much in your life has changed in such a short time! It is a shock. But you are handling it wonderfully and your Faith is a beautiful thing and God is smiling down on you!
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Wow, that is sobering, seeing clumps of hair just fall out. I don’t think it would be easy for anyone to handle because, like you said, it isn’t normal. As I always say, define normal! 😬
Great scripture! And good that you’re taking it in stride.
So, if your radiation site is a circle around your head, you’re going to end up with a built-in halo! 😇
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I can’t sleep for some reason and read this. I have tears. It’s the from the gut fear of that loss of identity that you see in mirror. It’s not vanity. I don’t wear makeup much but I have my hair. It’s long and I am older and it’s my me. I have thought what ifs and how I would deal with it. I know I just would but it would still hurt me in the goodbye of my me. But it’s not who we are that’s the light in your soul that shines from your eyes and strength in spirit and love of all life and god. You have that so deeply and you are a source of light.
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Stephanie, I think all of us; well, women for sure, look at our hair as our identity. It’s tough to think of it as just superficial . You aren’t alone there so try not to be hard on yourself.
…” People look at the outward appearance but the Lord looks at the heart “…. 1 Samuel 16:7 Yours is Beautiful.
Hang in there friend. Prayers & Peace always.
“
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Steph,
Beautiful is Beautiful regardless of our outer shell.
Uncle Dave
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Your words touch my heart this morning, as I’m sure they touch countless others.
Your gift for writing about your journey is astounding and should someday be publishished to encourage others to make the journey with faith and courage and honesty about their feelings and their suffering. Truly, your blogs, rather your journey expressed by them, is amazing!
A journey of faith, hope, strength, weakness and finally grace.
We are all learning so much from you, especially about how people with cancer feel about the disease and about themselves with the disease. Thank you for teaching us, enlightening us and sharing yourself with us. We are truly enriched. May Jesus give you more peace, more healing and more grace to share. Sending love and prayers.
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Your strength is so amazing through all of this! The good news in the hair loss is that you know the procedures are working to rid your body of the “unwanted tenant”…..so it is one of those balancing things in the medical field….you give up something to receive even something better! I had a friend who lost all of his gray hair while he was in treatment….but when his hair came back in, it was dark brown, wavy, thick hair of his earlier adult life! He was not only healed, he looked 25 years younger! And you, too, will be healed, and with your beautiful hair to adorn you. It will be a process, but so is life! Like a butterfly, you will become even more beautiful!
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Contact the American Cancer Society..they can help you get a wig to wear till it grows out again. Also, the cancer you are going to may have resources for you. It is better to just cut it short it takes the weight off . This is a temporary afflection..think of it as a desert you are walking through.
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You are beautiful!! ❤❤. Shave that head if you need to and get a sparkly, hot pink wig!!! 👑
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You are beautiful!! Praying for you!! May God continue to give you what you need for each day!!!
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As I was reading your blog, I was listening to a friends daughter sing “Let it be” so in the immortal words of Paul McCartney-
When I find myself in times of trouble
Mother Mary comes to me
Speaking words of wisdom, let it be.
And in my hour of darkness
She is standing right in front of me
Speaking words of wisdom, let it be.
Let it be, let it be
Let it be, let it be.
Whisper words of wisdom, let it be.
Hang in there, everyone is praying for you!
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My mom had ovarian cancer and she got her chemo by I V. She did not lose her hair. You are a women and that makes your hair part of how you view yourself. You have such a great attitude and you are brave and you have great faith it’s great to have a healthy cry. It’s scary even with faith. Even Jesus asked his father to take this cup from me, it is a very human feeling. It struck me that cancer was like the stations of the cross, as I walked with her through it. my moms faith guided her through it and we watched in amazement how strong her spirit was. She did buy a good wig because she thought she was going to lose her hair. I still have it and your welcome to it!!!! It’s a Cher wig, shoulder length dishwater blond!
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Sweet sweet beautiful Stephanie…. Your feelings about your hair loss is perfectly normal. You are not being vain, you are facing a courageous and difficult journey~ losing your hair is a difficult reminder of this journey. It is a loss, and you are entitled to grieve this loss. No woman wants to face hair loss, especially if it is a linked to a journey such as yours. This doesn’t mean dwell on these things, but as always, you are entitled to feel and acknowledge your true feelings..You are beautiful Stephanie, and you will be even more beautiful without your hair. Your beautiful head will NOT be sign of cancer, but a bold statement of an evangelist!~ You are a child of God and you are still here! You are here to continue His work. He is not done Stephanie. You are here to do great things and give comfort and strength to all who are where you are or are just beginning their journey with this crazy thing called cancer and it’s side affects. We love you Stephanie….. and on a side note… I also take my chemo in pill form♥♥
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God love you, Stephanie. I read other posts that said things along the lines of, “its just hair …” Maybe so, but its YOUR hair. And it’ll grow back, you know. I have a friend had long hair. She lost it when she was busy BEATING breast cancer. She cut it short, finally had her husband shave her head, and wore adorable scarves and feminine caps until her hair grew back. And all this was several years ago. You are going to beat this! Your tenant needs to be determinedly evicted. And I simply love the Bible passage from 1 Peter …
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You are so beautiful sweet Stephanie! I am reminded of this : In the light of day stained glass sparkles and shines. It is when darkness falls that it’s beauty shines from within.
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Hi, I don’t know you, but reading your post reminded me of when my daughter was diagnosed with a brain tumor. She had been very sick and we were almost relieved to know the cause and hope for a solution. We handled all the news really well until the doctor talked about how her hair would fall out. Then I fell apart. I think it’s not just our vanity. It’s visual evidence of how serious, how crazy, and how overwhelming the whole thing is. Sending love your way!
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My niece lost her hair while she was battling cancer. She thought she looked like an ugly teenage boy. She was beautiful with, without, and with hair. After her last treatment and at her follow up appt. they learned that she was expecting! Their son is now 4 and she is cancer free. Praying for you and your family.
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I have the same cancer as you. I can honestly say that loosing my hair was the hardest part for me. I wore a lot of scarves and hats. Good luck, I’m a 6.5 year survivor as of right now.
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When I went thru chemo I did lose my hair. I was blessed to not to have to radiation. WHen my hair did start to fall out , I did not fret because even tho it meant a loss, I knew my chemo was working. I only wore a wig twice because it made my head itch too much, wearing it. Luckily it was during the summer so I could get away with scarves and head caps. when my hair came back it was super awesome.. I had curls where before I had none..Waves throughout and the virgin hair was as soft as a baby’s bottom. IVe always been a very positive thinker even facing the evils of the big “c”. So anything I could make out as positive during my cancer journey I would. I say an extra prayer for those of you who are going thru your journey. THis June will be my 20th anniversary of my breast cancer journey..My wish is for everyone to celebrate their 20th and more!!
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There is nothing wrong with mourning any loss. Including the loss of your hair. Like all other losses, the grieving gets less over time. And like all grieving processes, you just need to roll with it until it passes. When you need to put on your happy face for life, just remember that you will have the most beautiful, soft hair you have ever had, when it grows back.
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Having been pretty much where you are with loosing hair due to cancer treatment, I say, allow yourself a good cry (I usually chose the shower) and then dry your tears and find some way to see a “silver lining” even if it the fact that you won’t have to buy as much shampoo. Crying is not inherently selfish or shameful. It is simply a release of emotion, just like laughing or clapping. It’s ok to cry. Just remember to “let it out, then let it go.”
As for your hair, it will grow back. You (and it) will be healthy very soon! You’ve got a good long time ahead of you to grow all the hair on your head at least 10 times over. And in the meantime, you can wear super cool wraps and hats. Or, take this opportunity to wear outrageous wigs! I’m talking electric blue, hot pick, mermaid swirl… if you’ve ever wanted to do it, now is the time!
I’m praying for you, my whole family is praying for you. I know you are in the hands of an incredibly faithful, capable, and loving God.
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Think of it as your Visitor is taking your towels it’s only temporary….when people look at someone new for the first time they look at their face first not their hair or body or scars….just another reason to give your visitor the boot…stay strong in your determination to kick him as hard and as fast as you can! People say sometimes that beauty lies in the eye of the beholder, I think all beauty lies in the heart not the eyes…
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It’s only hair, Stephanie, and it grows back! In 2006, I had my last chemo in November and set a personal goal of Easter 2007 to be able to go “wigless.” And you know what? I did it!!!! A proud (although maybe silly) goal.
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I really enjoy reading your blog! Your authenticity shines through! As a counselor for 7 years, I worked with clients that had cancer and other illnesses. I know how therapeutic journaling can be and how powerful it is for others to read your words and know they are not alone. And your humor is great! I can only imagine how buoyed you are when you read/hear how sharing your experiences have helped others. OK, this is my 3rd comment today. I’ll give you a rest 😉 Love and light to you, Stephanie!
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