Myeloma Lessons: Why Is Hair So Important?
So why is hair so important? This may seem like an odd question to ask. As you will see, it is an especially unusual question for me to ask.
My hair has always been a very important part of my life.
As a child, when the relatives would gather and the family photos would come out, my mom would always pass around one of me as a three-year-old standing on the beach with a full head of dark curly hair. “Oohs and ahs” were sure to follow.
As a teenager, once I escaped the hell of the parentally-imposed crew cut, I was careful to appear in public only if my hair was meticulously groomed. I was short and a bit pudgy, not very athletic. My hair was clearly my best feature.
When I left for college, I expressed my independence by not cutting my hair for the full four years I was away at school. It eventually reached the middle of my back. It was beautiful hair, and all the girls were envious. Not so much my family. My grandfather even offered me $1,000 if I cut it and kept it short. Being a man of principle, I refused.
Fast forward to me in my 60’s, and I still had a full head of dark hair with barely a speck or two of grey.
So, when my myeloma doctor made it very clear during our first visit after my diagnosis that the treatment path I would need to follow would include a stem cell transplant and certain hair loss, I was a bit taken aback, but not overly concerned. This was something to be dealt with down the road, assuming that I decided to follow his advice.
Eventually, I opted to proceed with the transplant. As the day approached, thoughts of losing my hair and mustache (which most people I know had never seen me without) came to the forefront.
I recall reading an article in which two leading myeloma experts debated the pros and cons of early stem cell transplantation. One of the points made by the doctor arguing against early transplantation was that those who lose their hair as a result of the transplant process appear to themselves to be “sick.” Because they are also perceived that way by others, they feel sicker than they otherwise would.
This notion was reinforced for me when I returned to work after my transplant. A co-worker who lost her hair due to chemo treatment asked me if I also lost my eyebrows and eyelashes (I did not, but she had). She related that she just looked so sick to herself when she looked in the mirror.
I realize that this might be more of an issue for women than it is for men. For example, broadcaster Joan Lunden said in a recent interview about her battle with cancer that she viewed herself as not pretty and less feminine after she lost her hair.
So it turns out that hair, which is largely non-functional (except when it is really cold out like it was last winter when I lost mine), can be very important. It affects our self-image and reminds us in a very visual way that we have a disease and that it is serious. I imagine that cancer patients and their loved ones are very aware of that.
However, when I lost my hair, I learned a valuable and surprising lesson: the loss of hair can also have a positive effect.
Here is how I learned that lesson.
When I was permitted to again go out in the world and mingle with the masses following my transplant, I saw many people I have seen for years, but who were at best “nodding acquaintances.” These are the people who you see at work, at the gym, around the neighborhood, or at the grocery store, but with whom the sum of your interaction is a smile and a “Hi.”
When these folks saw me in my bald state, it was obvious to them – as it was to everybody else – that I had been through chemo. I was prepared for some reactions, but I was surprised and deeply touched by what happened.
Many asked me, in our first “real” conversation, how I felt. And they asked this with genuine concern in their voices. Some were a bit more forward and probed for details.
I found myself not the least bit reluctant to describe what I was facing and what I had been through. In many instances, this led to a discussion of similar challenges they or their loved ones were facing. It became clear to me very quickly that we were inspiring each other.
They were moved by the way I was approaching my battle. And I was similarly energized by hearing stories of how they, or people they knew, had fought and won against daunting odds.
These are conversations that never would have taken place if I hadn’t lost my hair. My baldness was the perfect conversation starter.
I am not very philosophical in nature — I tend be more of the analytical sort. However, dealing with the many ups and downs since my diagnosis has taught me that the most difficult challenges life throws at us can also present us with opportunities.
We learn about ourselves and others. We have opportunities to help and give back. We come to savor and appreciate life more than we ever have before.
Given my fondness for my hair, which now thankfully is back, I never imagined that losing it could be positive in any way.
Yet my experience shows that even losing a prized part of myself can be a good thing.
Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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For me, knowing I would be losing my hair just was not a serious concern. My main objective and concern was beating down this myeloma and getting into remission, and if that meant losing my hair, so be it — I did not care. Once I lost my hair, it did not bother me at all. I thought I looked fine without my hair, and if it never came back at all, I would be ok with it. I have a mono-brow which is just about indestructible, so I did not lose my eyebrows and I also have thick eyelashes that I do not remember losing or, if I did, they grew back quickly too. I really noticed the cold, though, without hair. What made me look sickly though was the 55 lbs (25 kg) I had lost. I had skin hanging off my bones. The weight come back to though.
I had similar experiences to what you had when people could start seeing what was going on with me. It was reassuring. People were comfortable talking about it with me and it was not awkward for them. For most people, I was not their first experience with someone they knew who was fighting a battle with cancer.
This past April, when I had my SCT -- I did lose my hair just as expected. I had already decided not to use wigs, scarves or hats and I agree with Andrew Gordon that when a person is bald due to illness, people seem to just automatically think 'sick'. Since I felt really strong and well, I figured that the no-hair experience was an opportunity to have some fun. I'm a 70 year old woman, glasses, somewhat chubby, so I had a henna tattoo applied! Needless to say I got some really wonderful reactions from people.
If you Google "Henna Crowns", you'll see some amazing photos.
Great column, Andrew! It's hard to imagine you with such long hair as you had in college, but that was the style then. I had hair that long too, but now that wouldn't suit me.
It's a bit of a disconnect for people to see you both with no hair and then with a wig, such as I had after my ASCT, but I could not have gone without a head covering in our winter climate. I had hats, scarves and velveteen turbans. The wig I got had no grey in it, and really, I thought it made me look younger, so that was nice. The oddness of it was that I could walk outdoors in -10 to -15C (5-14F) temps with just the wig on and no hat! People passing me on walks really stared at me for that!
Happy Thanksgiving to all of my American friends. Have a great weekend!
I, too, had am ASCT in April and lost my hair for a few months. Being bald is now in fashion, so I didn't get any looks. I have always kept my hair short, from high school dress code, military, then wanting to keep a professional appearance. My hair and beard came back, softer than before. I now plan on letting it grow long, reminding me I'm still alive. The doctors gave me the usual life expectancy, but I don't like people I don't know telling me what to do, so I plan on taking my sweet time until I check out.
Wow Andrew, I had only the mental picture of you based on the photo you chose for this website. No mustache and very short hair similar to what my weight lifting son Andy has. My son Andy has red curly hair which he detests and has always kept it the length you show in your photo. (He is, however, big into full sleeve tattoos, which I doubt you have.) You also indicated that in your youth you were pudgy and not very athletic. With your competitive biking I would never have imagined that either.
So my impression of you based on your cycling posts and this photo gave me a totally different impression. I thought of a highly athletic individual with possibly a military background. Amazing how we make mental assumptions about people without knowing them and find out how wrong our assumptions are.
Thanks for sharing this.
Ron
When I lost my hair after transplant, I thought it was not too bad. I always had my hair very short, so everyone was already used to my round head. Most of the time during my baldness I was really sick and had other concerns. I did put on scarfs and hats. Even at night, my baldness was covered with a smooth cotton cap to protect me against the cold. For my husband my hair loss was a different story. For him, it was as if it was written all over me : "caution very vulnerable cancer lady". The result is that, after having my hair very short for 20 years, it is now already reaching my shoulders. Suddenly the length of my hair is an issue for him. He likes it as long as possible, as if it could help me to prolong my life. So Andrew, hair can be an issue in different ways. Thanks for your column.
My hair had been thinning for some time prior to my transplant and I had actually considered shaving my head, or at least buzzing it off to a few millimeters length, but I didn't have the nerve to do that. The transplant made my choice for me, and I've kept it at about the length in Andrew's photo ever since. I have a terrible eye for what looks good on me, so I can't say whether I really made the right choice or not, but I like it better this way. For better or worse, I just don't have to worry about it now and that's a big advantage. And, heck, it's the most stylish haircut I've had in decades!
Thanks for a great column, Andrew.
"In many instances, this led to a discussion of similar challenges they or their loved ones were facing. It became clear to me very quickly that we were inspiring each other."
I had this experience, exactly. When the wife of the family that has lived 2 doors down the street from us for 20 years saw me running one day with my SCT-bald head, she shared with me that she has had Parkinson's disease since she was a teenager. I had no idea! We shared a big hug that day even though I was sweaty from running, and we've been cheering each other on since then.
I appreciate all the comments. It is sometimes amazing to me that a largely non-functional body part like hair can be so important.
It is interesting to read that Mike and Eric had similar experiences in which their lack of hair created an opportunity to engage in interaction which otherwise likely would not have occurred.
Ron - You are right about how our perceptions created by only an online acquaintance may be misleading. In fact, I no longer look like my profile picture. I may have to rectify that.
I had my SCT in September 2006. It was the third time I was losing my hair. I was expecting it and it really didn't bother me at all. Of course, it would be winter by the time I started to grow some fuzz. I enjoyed reading the articles and feedback.
This time I lost one side of my head due to radiation. The hair on the right side of my head is fuzzy. However, the rest of my head is shaved and growing as it normally would grow. I did this to help the right side look better, which at this time it is starting to be fuzz. I have had short hair since I was in college.
I lost my hair because the tumor on my skull invaded my brain in a few areas. It will most likely not grow back on the right side, like it is on the left side. I am not sure how I will style my hair. The radiation was in November, 2014. I am sure it will be something to look at!
Audrey--That is quite a "hairy" story (forgive the pun). You could come up with a seriously punk hairdo!!
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