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Sean’s Burgundy Thread: I'm Just Wild About Hairy

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Published: Oct 4, 2011 10:38 am

The tiny room was spinning like an off-kilter gyroscope. I grabbed the sides of the chair with the hope that I would not fall off and further injure myself. The lights were interrogation-level bright as I closed my eyes to ward off an oncoming wave of nausea and a gnawing headache.  An unsettling buzzing near my left ear was growing in intensity as I realized that the point of no return was close at hand.

“Last chance. I don’t want to hurt you if I don’t have to. Sure you want me to do this, Sean?”

“Yes, I’m sure… I think... Let’s get it over with.”

“I’ve never done this before.”

“Me either. Go ahead and do it.”

With that, Jack Bauer, I mean my wife, Karen, took the loudly buzzing, shiny chrome clippers, placed it on the crown of my head and began shearing me like a sheep.

In my battle against multiple myeloma, the initial induction round of high-dose chemotherapy made my hair start to fall out in just a few short weeks. On my pillow, in the shower, here, there, and everywhere. Hansel and Gretel could have easily tracked me down by following the salt and pepper trail I left behind.

I was tired of dealing with the fallout, so to speak, and had no misgivings about entering the realm of the follically challenged. Not many misgivings, that is.

By the time Karen had begun Edward Scissorhands-ing me, I had already shaven off the mustache that I had been cultivating for more than thirty years. Boy, I hated to see all that work go down the drain! And with my somewhat round, Charlie Brown-esque head fully shorn, I was afraid that I’d end up looking like the Not-So-Great Pumpkin.

As Karen finished, I noticed that she had reacted rather emotionally to what I thought would be a fairly humorous adventure. With tears in her eyes, she said, “I know it’s silly, but seeing you like this makes this nightmare seem all-the-more real to me.”

Inwardly, I was hoping that she was equating the ‘nightmare’ to my battle with cancer and not to my newly christened homage to a hardboiled egg. Outwardly, my head was, well, cold.

I rose to my feet and gave Karen a reassuring hug to thank her, and then I slowly turned toward the bathroom mirror. I was, suffice it to say, a bit taken aback by what I saw.

Staring back at me was someone I vaguely recognized. When I finally figured it out, I was the one choking up.  I looked like my father. The same blue eyes.  The same upper lip. The same worried expression of a cancer patient that my dad wore a decade earlier during his short-lived battle with prostate cancer.   I was, no doubt, my father’s son—only balder.

I was diagnosed with multiple myeloma (IgG kappa) in November 2008 and began my first induction phase of chemotherapy on December 9, 2008, at the University of Arkansas for Medical Sciences’ Myeloma Institute for Research and Therapy (MIRT).

One of the things that I learned early on in my myeloma journey was that chemotherapy, in very simple terms, is designed to target and damage rapidly dividing cancer cells.

Unfortunately, also caught in the chemical dragnet are other rapidly dividing cells, such as those found in our digestive system and, yes, our quickly growing hair follicles.

In my limited experience, hair follicles damaged through chemo normally lead to your wife shaving your head with the clippers that she swears she never used on the dogs. Your experience may be different.

As a curious sort, I had wondered which of the prescribed medications I could blame for my hair falling out. Enrolled in MIRT’s Total Therapy IV clinical trial, my regimen included the following chemotherapeutic agents, which are abbreviated by the letters M-VTD-PACE:

M = melphalan (Alkeran)
V = Velcade (bortezomib)
T = thalidomide (Thalomid)
D = dexamethasone (Decadron)
P = cisplatin (also known as cisplatinum)
A = Adriamycin (doxorubicin)
C = cyclophosphamide (Cytoxan)
E = etoposide (Eposin)

By talking with my nurses and doctors and by visiting various cancer-related websites, such as the American Cancer Society and the American Society of Clinical Oncology,  I discovered that doxorubicin often causes significant hair loss in patients.  Etoposide’s effects range from mild hair thinning to total loss, and cyclophosphamide is very likely to cause hair loss.  Melphalan, in the dosages we myeloma patients use, often times causes follicle damage, while cisplatin doesn’t usually cause hair loss.

But as they say, individual results may vary. Some people lose hair, and some people don’t. Go figure.

Over a nine-month period, I underwent four rounds of M-VTD-PACE (two induction rounds and two post-stem-cell-transplant consolidation rounds), and my hair, everywhere,  was missing in action the entire time.

Interestingly, I have now been through nearly two years of weekly maintenance chemotherapy with the VRD regimen (Velcade, Revlimid (lenalidomide), and dexamethasone), and my hair eventually came back in its original pre-cancer color, texture, and geographic location.

One of my warm-hearted research nurses quipped in her Scottish brogue, “I wish for you that your hair comes back shiny red, twice as thick, and oh so curly!”  I’m not exactly sure what I ever did to her to deserve that sentiment! She probably wished freckles for me, too.

It should be noted that most chemotherapeutically-driven hair loss is usually not permanent. It may initially come back a bit different in texture or color, but given time and the stoppage of offending medications, one’s hair often returns to its original state.

In my hairless days, I chose to treat the condition as a minor inconvenience and always had a ball cap and a sense of humor handy for going out and about.  A case in point:

While undergoing my M-VTD-PACE treatment in Arkansas, I was afforded a couple of opportunities to come home to Missouri for short breaks to recuperate.  It was during one of those breaks that I was feeling well enough to go to a Sunday morning church service.

Karen and I planned to slip into the service and then leave quickly as I didn’t want to shake the hands of dozens of well-meaning, but germ-wielding, congregants. I also didn’t want any of my numerous fractured bones further crushed in the countless bear hugs that I knew would come my way.  But before we could make a getaway, we were surrounded by several of the lively, spirited, and caring gray-haired ladies of the church heading toward the kitchen.  After a few pleasantries were shared, the conversation went like this:

“Take off your hat, Sean!  Being bald is very ‘in’ these days.  Men are cutting their hair off all of the time.  Some even think that it’s … sexy.”  I guess the ring leader said this to make me feel better, but more likely to have a little fun at my expense. They all, including my wife, chuckled at my embarrassment.

Not one to leave a feisty volley unanswered, I replied, “Thank you! But you know, most guys don’t go so far as to shave their eyebrows, too. That takes commitment. I think that your heartthrobs, Yule Brenner, Telly Savalas, and Uncle Fester, actually had eyelashes and eyebrows. Wimps. And here I am, no hair on my head, no eyebrows, no eyelashes, no chest hair… do I need to go on?”

You’ve never seen a gaggle of giggling church ladies run away as fast as they did.  Karen just gave me that ‘I know you can’t help yourself, but for the sake of the kids, let’s not get kicked out of church’ look before she grabbed me by the sleeve and drove me home.  Those ladies didn’t make any eye contact with me the next time I made it back to church.

Of course, it isn’t just the hair on your head that goes AWOL. I must say, it sure made showers, shampooing, and shaving a breeze.  And for a year I didn’t have to contribute to the billions of dollars of revenue that the hair care products industry receives, although I probably ratcheted up my spending for ball caps, stocking hats, and sunscreen.

Cancer patients can be physically and emotionally affected by chemo-induced hair loss in many different ways. Some see it as a non-event, just an inconvenient speed bump to put up with and laugh off. Others are devastated at the thought of losing their hair. Perhaps it’s a concern about one’s ‘not normal’ outward appearance to the world or dismay with the fact that cancer has taken away more control over us than we want to give it.

Talk to your medical professionals if you need help dealing with any side effects of chemotherapy, including hair loss.  Connect with reputable cancer agencies, hospitals, oncology clinics, support groups, and fellow patients to discover where you can find wigs, hats, scarves, turbans, and the like, to make your experience more comfortable.

In any event, I wish you good health and exciting haircuts in the future!

If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .

Photo of Sean Murray, monthly columnist at The Myeloma Beacon.
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10 Comments »

  • Lynda Clark said:

    I always said my two rounds of complete hair loss were God's way of making things easier for me after my two SCTS: no shampooing, no blow drying, no leg shaving! Only had to deal with the question of: was a ball cap or scarf more appropriate for the day's outing (just couldn't do the wig thing). The hair loss never bothered me as badly as other patients, from what I've heard. Due to a broken thigh due to a large lesion, using a walker, to me, was more distressing.

    But, I must admit, after my second go-round of hair loss, and after attending two family weddings, experiencing the bewildered looks and the whispers, I started feeling the impatience and depression creeping in.

    When my hair came back in the second time, the grey had disappeared, but sadly (or not), it returned after about a year.

  • Stan said:

    Who are we supposed to tip for the hair removal? The lead oncologist? Is 15% enough? Will insurance cover it?
    My head is totally bald but I do have some razor stubble coming through. I'll take it!

  • Lori Puente said:

    We had intended to get to a barber to shave Dave's head BEFORE the chemo, but never got to it. I don't think Dave was ready emotionally. After we started the chemo, he felt too awful to go and then as it was falling out, it was more that it HURT. His hair follicles were just killing him! So off to the Walgreen's for the clippers I trucked. I would point out all the "bald" guys. "See honey, it's 'IN'." Our non chemo bald friends would say to Dave, "At least yours will grow back!" And then a friend bought one of those funny visors with sheep fleece plopped on top meant to look like skater dude hair. That was the best. We had a great laugh with that, especially because it was blond and Dave being of the Latin persuasion had never had blond hair. He was mid thinning and so while his did grow back, it was less. But, it did grow back and we all survived. I was just really glad he didn't ask me to shave my head in solidarity... Wait... I think he did with a smirk and wink. :)

  • Jan said:

    Your comments really hit home.
    I've had two stem cell transplants, and lost my hair twice. The first time, in 2000, my chemo cocktail was CVAD (Cytoxan, Vincristine, Adriamycin and Dexamethasone) and was adminstered by I.V, throughout one week in the hospital each month. During one of my hospital stays, my hair was coming out in clumps and was very annoying. The nurse's aide said she would just shave it off for me if I wanted.....so I consented and only had a moment of regret as she started in. It was actually much more freeing to have it all finally just gone !
    My husband has been bald for many years and I could finally understand how cold his scalp would get, especially when I stuck my head in the refrigerator - that was a shock !!
    I wore a wig for awhile but it was hot and sweaty......I wore scarves and caps more often. I always told people that it was just hair, it will grow back - and if that's what I need to do to save my life, bring on the clippers !!!

  • Sean Murray (author) said:

    Hi! Thanks for sharing your own hair raising stories! I'd love to hear more. It's amazing how many different, sometimes deeply rooted (sorry, I couldn't resist) feelings are triggered through hair loss precipitated by chemotherapy.

  • Julia Munson said:

    I can identify with the hair hurting. This motivated me to get the clippers clipping! The cold head is the second i.d. I don't know why men shave their pates. I had to ware a cap at night to keep warm. 'Course it was in the winter.

    I was surprised at how long it took to grow back. I messaged my bald head, rubbing it with oils, etc. Might as well have done nothing, it took it's own good time. One other surprise was the falling out of the clipped stubble till I was a skin-head. Then fuzz began to peak through. Starting from Sept 1 until Christmas, I finally began to get something looking like hair, then it went faster.

    Now it's all grown back and after a faze of somewhat curly hair, it's back to normal -- still gray -- but THERE!! Yea!

  • Sean Murray (author) said:

    Gray is beautiful, Julia! Thanks for sharing your story.

  • Linda Mc said:

    Sean,
    I love your sense of humor, and thanks for sharing what it is like for men to adjust to one more loss which is obvious. My husband has taken a great interest in my hair as it grows back in. First he was intrigued with the "hurricane' pattern on the crown of my head. Now as my hair is just over 1 inch long with some wave, he seems to be entering a Rorschach phase and thinks he sees a bird on the back of my head. It actually helps to laugh at his new and creative discoveries. I can't imagine what he will come up with next.

    I have a question that I can't find the answer to, and perhaps you will know. You wrote, "It may initially come back a bit different in texture or color, but given time and the stoppage of offending medications, one’s hair often returns to its original state." Do you know why the hair should initially be so different? What is going on physiologically in the body that gives different directions to the development of hair? Is it affected DNA? Or is the body not yet able to respond in the same way? Or ... ? I'm just curious about how the body is working during the recovery phase. It's actually miraculous what the body goes through during and after a stem cell transplant.

  • Nancy S. said:

    After the stem cell harvesting, a couple of weeks after having the strong chemo, my hair started to hurt and fall out. A trip to the hairdresser showed that clumps were coming out as he tried to style it....no charge for that app't!! Off to the wig store, where I got a nice wig with no grey in it that instantly made me look a few years younger (it was synthetic, felt quite comfortable and was permanently styled in a page boy look. I wore a cap under it that was a synthetic mesh) and a couple of velveteen turbans to wear at night. For the next 5-6 months, that was my look...it was kind of interesting since people I know initially did not recognize me...it was a disguise actually. Since it was the middle of winter and the outdoor temps were about -20 deg. celsius (zero fahrenheit??) the wig served as quite a good hat. Usually people would have a hat on their hair, but mine was sufficient on its own. Eventually the hair started to grow in, the wig started to slip around on my scalp, and it was time to move on to a new look of really short, but wavy hair. This was also not my original look...another disguise!! So I could talk to people or not depending on my energies...it takes energy to explain the MM situation and I did not always feel up to that. So, two years on, have a full head of hair again, and am kind of reluctant to get it cut very short since I did miss it for a few months!!

  • feresaknit (Paula) said:

    How do I get marker pen off my monitor. I wondered what you looked like with a moustache! :-D