It’s not just hair.

“It’s only hair. It will grow back.”  I’ve heard that so many times and it is true.  It IS only hair.  It IS currently growing back.  But–SO many buts–if it were only JUST hair, maybe that would be an easier pill to swallow, to cope with, to survive.

While someone is looking at you saying those words, you are looking out at the world — your world, and it has been shattered.  It’s not just hair.  It’s everything. It’s all the things. Starting from the day you got the phone call from your doctor with the results of your biopsy, to watching the long pieces fall to the floor as the clippers in your spouse’s hand buzz in your ear along with his quiet sobs, moving forward to the months of infusions and the fatigue beyond anything you could imagine. If only it was just hair.

 

 After the Initial Diagnosis

So begins the testing: ultrasounds, MRI’s, bloodwork, scans and appointments about all the next steps. These are the next steps that decide what your future body will look like.  You are making decisions to the best of your ability, and that ability is completely degraded because your whole world has just exploded.  One breast MUST go, what to do about the tumor in the other breast? Lumpectomy or bilateral mastectomy? Skin-saving? Nipple-sparing?  FLAP procedure? Implants? Flat-chested? None of these? Some of these? What is best for you??? You really don’t know because at this point you just want to come out the other side of ALL OF IT alive.  You just want a future. Period. Just the other day you were working full time loving your job and your life.  Your hair isn’t even a thought, a blip on the radar…yet.

 

 

Surgery

Then comes the surgery, four days before your 31st wedding anniversary. Two days later, when you are allowed to take a shower for the first time, you look in the mirror at the devastation that is your body and your person is with you. He sobs with you, for you and for himself while holding you up because you can barely stand. Between the recent surgery, the exhausting task of showering and the overwhelming surreal world you are now living in, standing on your own is too much. If only it was JUST hair.

Healing while making more choices about impending treatment, so much information is thrown at you that it’s hard to tell up from down. Chemotherapy? Radiation? Post-treatment drug therapy? Where to go for infusions? Where to go for radiation? Everything is a choice… 

 

   

More Devastating News

Another phone call from the doctor and you find out the right sentinel lymph node is cancerous. This affects your treatment and staging, and in the back of your head, your survival. Another surgery? You are urged to do this as quickly as possible, so another surgery happens just over 3 weeks from the first one during which seven lymph nodes are removed.  Lymphedema is now a possible part of your future. Low risk? Yes. But it’s another weight added.  And what you have is already so heavy to carry. 

The phone rings and it’s the doctor, some of the lymph nodes removed were positive for cancer cells. The small ledge you were standing on, the one you so carefully built after both surgeries, gives out beneath you but there is just no time to fall apart. There is more talk of what is to come; more decisions to make. What your treatment will look like, how it will affect you — including side effects.  As petty as this sounds, this is where you allow yourself to cry about your hair because now it IS a blip on the radar.  It’s one of the few things you have right now that makes you feel like YOU and it will be taken away as well.  It’s not just hair.

  

Beginning Chemotherapy & the Best Laid Plans

You have your first infusion and are told that by the time you come back in two weeks, your hair will have begun to fall out in handfuls.  The infusion nurses are extremely kind but also blunt about what is coming and what to expect as far as all the symptoms and side effects you may experience. You are prepared and have made plans to donate your hair to charity, deciding when to cut it before too much falls out.  Donation becomes impossible because when you go to wash your hair on cutting day, it globs into a horrendous matte that is untamable due to so much falling out all of a sudden. The one positive act you were counting on has been lost.

Your spouse comes home to find you sobbing on the shower floor.  He helps you clean up and together you cut off the clumps and he buzzes off the long pieces that are left as you both cry watching them fall. You think to yourself, “it’s only hair”, and it is. It IS only hair but it’s not JUST hair.  It’s ONE MORE thing on top of so many.

 

 

Bald. And it is Hard to Feel Beautiful.

By the third infusion your scalp hurts and the buzz cut you’ve been sporting, or “rocking” as all your friends tell you, has to go. The stubbles cover your pillow in the morning and your towel after showering. You have reached a point where your tiny little hairs actually hurt to be on your head and now those have to go too. A further blow to the barely existent dignity you have left.

One of your best friends is visiting for a few days and you ask her to shave your head. Never imagining when you were nine and playing together, that at 52 you would be putting this kind of weight on her shoulders. But of course always knowing she would handle it with grace and kindness and love. Once more you find yourself in the ever expanding surreal life that is now yours as she gently shaves your head using the clippers with no guard, asking often if she’s hurting you because she knows how sore your scalp is. This journey is so much more than hair.

 

 

 

Seeing the Finish Line

You are almost done with chemotherapy, only a few infusions left.  The paper chain you made to count down the days is close to being gone. There are no words to describe the level of your fatigue because you thought you knew what that word meant up until now. Your eyelashes and eyebrows that you had are gone. Your soul is tired. 

You truly look ill now – worn, weathered, beat up and battered. And even the days when you put on some makeup and smile, your outward appearance may show others that you are “doing okay” but inside is the never ending silent cry of fear and fatigue that beats down upon you relentlessly. Now. Now is the one singular moment that it was just hair. The thought of washing, combing out and drying that hair is infinitely more than you could do right now. It IS just hair but so much more.

 

Moving Forward

Infusions are done. You have rung the bell.  Your body is so tired and now it’s time to start healing and prepare for the next phase. You look at everything you have been through up to this point and everything that is still to come: radiation, monitoring, scans and the ever present worry.  And you would really like some hair, maybe some eyelashes or eyebrows.  Some sense of “normalcy” that you would recognize about yourself after all that has happened and you’ve endured. Just something that makes you feel familiar to yourself again. 

It IS only hair but it’s not JUST hair, it’s all the things you’ve already had to sacrifice.  Pieces of your body. Life moments missed because you were too ill or too tired to be present. Events you couldn’t attend because you were immunocompromised and shouldn’t be in a crowd.  Life. You have missed out on parts of your life while you were resting or sleeping. You have had to miss out on all these things now so that you hopefully have a future.   It’s not just hair. IT’S. ALL. THE. THINGS.

 

 

 

 Say “Hello”

This is a small part of my story. Every person’s journey is different but yet so many of these experiences, feelings, struggles and fears resonate the same within the breast cancer community. I hope I reached you on some small level and you have felt seen. It’s not just the hair…

I would love to hear from you if you can relate to any part of this story. Whether you are a survivor, a fellow current traveler or perhaps a loved one or friend watching someone you know that is on this horrific journey.

All my best,

A.