Treatment

But It’s MY Hair!

A person might not think about how important their hair is to them until they face losing it. This is a real side effect for those who have been diagnosed with cancer and are on chemo. For some, hair loss is a distressing side effect and is a daily reminder of their illness.

My whole world crashed on April 13, 2018 when I was told those 3 devastating words, “you have cancer.” My life became a whirlwind of doctor appointments, surgery, radiation – both external beam and internal, and chemo. My initial treatment of chemo did not cause hair loss, but after a scan that showed the cancer had spread to my lymph nodes I started on a different round of chemo that causes hair loss. Not only did I have to face and deal with a re-occurrence, I had to deal with losing my hair. For me, the thought of losing my hair was devastating. I had several thoughts; ” I’ve always had hair, people know me by my blonde hair, and I like my hair…Why do I have to lose my hair?”

After finding out that I had a re-occurrence, people would ask how I was doing. My main answer was, I’m doing okay but I don’t want to lose my hair. After hearing some of their responses, I really didn’t feel like anyone was listening to me, listening to what my fear was.

-“Oh, it’s just hair.” Yes, it’s just hair but it’s MY hair and I don’t want to lose it.
-“At least you’re still alive.” True, I am very thankful to be alive, but I don’t want to lose my hair.
-“It will grow back.” Yes, it will grow back, but it’s MY hair and I don’t want to lose it.
-“It’s only temporary.” Yes, it’s only temporary, but I don’t want to lose my hair for any amount of time.
-“They have some nice wigs and scarves.” Yes, they do have very nice wigs and scarves, but I still don’t want to lose my hair.
-“Get a nice wig and no one will know that you are bald.” I will know that I have lost my hair.
-“It won’t take long to get ready in the mornings.” True, but I like to shampoo my hair and I don’t want to lose it.
-“Just think of all the money you will save not having to buy shampoo or get haircuts.” True, but I would rather spend the money for haircuts, I enjoy having my hair done.

I would hear so many different things, when all I wanted to hear was, “I know you don’t want to lose your hair and I’m sorry that you have to.” I wanted to just tell them yes, it’s just hair but it’s my hair and if it is no big deal you shave your head when I lose mine and keep it shaved until mine grows back, then tell me “it’s just hair. Funny no one took me up on that offer.

So, chemo day #1 came and went and about 2 weeks later, I started losing my hair and I was a mess – a hot mess to be exact. The first handful of hair that fell out was devastating and all I could do was cry, then the next handful and the next handful. Lose a handful of hair and cry was my routine for the following 3 days. On the 4th day I decided that I was tired of letting the “cancer” be in control and I chose to be in control – I don’t want to lose my hair, BUT I am losing it. That was the day I took control of when I was going to lose the rest of my hair and shaved my head.

Fast forward 2 weeks, my hair is gone and I have found some really nice head covers. I am slowly getting used to being ‘hair free” and I am sure that in time I will be rocking my hair free head without a scarf or beanie. What I have learned from this experience is that most people don’t think before they speak and often times they don’t know what to say. It’s not easy to see and understand that when you are facing something that is devastating and all you want is to feel supported and understood.

To all my teal sisters who have to deal with hair loss, I understand how you feel and I’m sorry that you have to go through all of this. Be strong and take control, don’t let the “cancer” have the control. For those who don’t have to deal with hair loss, just be supportive and understanding.
I guess there is a positive to losing my hair – at least I don’t have to shave my legs.

Angie McKibben is almost a 1 year cervical cancer survivor. She was diagnosed with stage 4a cervical cancer in April 2018. She is an RN case manager and animal lover. She lives in Zaleski, Ohio with her grandson, a crested gecko, a bearded dragon named Jasmine, and Mini – a daschund who believes she is Angie’s owner. She would like to see more cervical cancer awareness in her community and plans to be an advocate for prevention and early detection.

Days to weeks, months, or years?

I was first diagnosed with early stage cervical cancer in October 2012; I was only stage 1b2.  I was supposed to have a surgery and be finished with cancer.  It was supposed to be a one-time concern, no chemo, radiation, or additional treatment.  I was supposed to be okay.  Guess what?  Things don’t always work out the way they are supposed to.

In 2014, I had my first recurrence.  The doctor was optimistic we could treat the cancer and get rid of it, if we attacked it aggressively.  So, I went through multiple types of chemo and external radiation.  I had a PET scan which showed I was cancer free.  I could go back to my life.  However, that was short lived.  Three short months later I had a routine follow up scan and we found that the cancer was back and had metastasized.

In 2015, when I was diagnosed with my second recurrence, it was deemed that I was incurable.  I would live my life with cancer.  I would live knowing that my cancer would never go away.  It is something that is hard to comprehend.  Honestly, I still have family and friends who just don’t get it.  They still think that any time I go in for a checkup or scan we are going to hear that I am cancer free.  It is hard to have to continue to explain to them that the cancer isn’t going away.

Last month I had a PET scan to see how the cancer was progressing.  I shared out publicly that I was going to be having the scan.  I received a lot of encouragement via social media and there were still people who were hoping for a clear scan.  I was just hoping for a scan that showed the cancer had not spread into new areas.  Unfortunately, what I hoped for is not what happened.  My scan showed that my cancer had grown and spread.  The scan showed an increased size of the mass in my pelvis (involving the rectum) and on my supraclavicular lymph node (near my clavicle).  Additionally, there are new growths:  one in my neck, one on my trachea, and multiple on my liver.  This is not what I wanted to hear.

Meeting with the doctor was the next step after my PET scan.  I had a few days between my scan and my appointment to sort through things mentally.  When I met with the doctor we went through all of the treatments we have tried previously:  surgery (twice), Carbo/Taxol/Avastin, Cistplatin, external radiation, Avastin alone, Carbo/Taxol (again), Topetecan, clinical trial immunotherapy CX-072, Carbo/Taxol (again).  As you can see we have tried many options.  These options are not without side effects.  They are not easy.  Many times, these treatments would result in me having to be placed in the hospital for multiple days due to complications, infections, and blood transfusions.

Taking all of this information into account the conversation with my doctor moved to determining what we should do next.  How do we treat this incurable cancer?  Well, the answer is that it might be time that we don’t treat it.  We have exhausted our options.  At this point the treatments could shorten my life instead of extending it.  The treatments would absolutely reduce my quality of life, as proven by my many hospital stays.  I am a 33-year-old mother and wife.  Although I am not ready to die I know that I do not want to spend my remaining days ill in the hospital due to treatments. 

As we continued this conversation my husband brought up the idea of an immunotherapy which was recently approved for cervical cancer:  Keytruda.  My gynecologic oncologist said that it was an option, but it would not be without side effects.  We would also need to do a biopsy to see if I was a carrier of a certain tumor marker to determine if it was a treatment which would be a viable option.  I will be having my biopsy soon.  This treatment isn’t something that would cure the cancer, but, maybe it could slow it down.

One of the hardest parts of the conversation with my doctor was when I asked something I always said I would never ask: “How long can I live if we don’t do treatment?”  I never asked because I really didn’t want to know before, however, I felt like at this point it was a key piece of information when deciding what to do moving forward.  Dr. Callahan said he liked to break down the answer into three parts: days to weeks, months, or years.  We discussed that I am not at the days to weeks point, but, I am not in the years category either.  Imagine that.  Picture sitting in your doctor’s office as a 33-year-old wife and mother hearing that you are going to die without treatment within a year.  Remember that as you

are sitting there you know you have exhausted your treatment options and the best way to have a fulfilling quality of life is to stop treatment.

Honestly, I fully expected to hear that the recommendation was no further treatment.  I am pretty well versed in cervical cancer at this point; I have been dealing with it for over six years and have been advocating for awareness much of that time.  I have spoken with specialists from around the world.  Met fellow patients from around the world.  I have attended funerals of friends who were in the same situation I now find myself in.  I knew what was coming; I knew we were out of options.  It is never easy to hear though.

This was a hard message to share out publicly.  I have had to mentally prepare myself for the responses.  There are people who are going to push me to find religion.  There are people who think they are experts and know how to cure cancer without standard treatment.  There are also those individuals who will still think I will be okay.  It is hard to break the news to people.  I know people want to help but don’t know what to say.  I don’t know what to ask for.  It is challenging all around.  As far as the time I have left goes, I am going to continue living my life until I’m gone.  I hope you will join me!

– Erica Frazier Stum