The Hairy Truth: What I Learned about Going Bald after Chemotherapy for Cancer

These days, doctors pretty much know which types of chemotherapy will leave you bald and which do not. But realizing you are going to have to say goodbye to your tresses doesn’t make it any easier.

I was feeling pretty secure when 15 months of strong chemotherapy left my hair intact. But the new drug cocktail enlisted to battle my returning cancer immediately took its toll. Within two weeks my hair was history.

After first round of chemo

Arrrgh.

I know, I know, the main thing I should have been concentrating on was getting better; killing those cancer cells so I could lengthen my life. And I was. But it was hard not to think about my bald head. Because it was there, every day... for months.

And while my sweet friends told me I had a good head for baldness, I disagreed. When I looked in the mirror, I didn’t see a gorgeous shiny smooth head like Charles Barkley’s. There was a four-inch scar at the front of my head. Next to it were many lumps from the brain biopsy performed to identify the source of my mysterious illness, which turned out to be lymphoma.

Here a few things I wish I had known about losing your hair after chemotherapy:

Get rid of it once the fallout has begun. 

I prolonged this process and wasted money, time and sweep-up efforts.

About a week after I began my second round of chemo treatments, I noticed hair coming out in my hands.

Two weeks after second chemo

So I made an appointment with my hair stylist to get it cut into what I called my Jamie Lee Curtis look. As the hairdresser was trimming, he found more tufts coming out.

“Yikes,” I said. But I should have said, “Shave it all off.”

For about a week, I resembled a hairy version of Pig-Pen, the Peanuts character who always gave off a cloud of dust. My Jamie Lee tresses were falling out everywhere: the floor, pillow, my bed and bathroom sink. It was gross.

So I implored my husband to trim my head with an electric razor. Gone was the choppy look but my hair was still visible and spotty. Not too attractive. And it was still messy.

The next time we went to a medical appointment, I made a detour to a walk-in haircut place and asked for a complete shave. 

Shop online or at cancer specialty stores for attractive caps and scarves.

I wore a baseball cap right after being shaved bald, but I was ill-prepared for the challenges of covering my head. I learned to love the feel and convenience of cotton caps: they didn’t move around or cut into my head when I was lying down (which was a lot). 

I found these at my hospital’s gift shop devoted to cancer patients. It had the best selection of caps and beautiful scarves to wear on my head. Another specialty shop where I made more purchases was near a local hospital, featuring wigs, scarves and caps for cancer patients.

I’ve since learned that you can save money (and energy) and get a wider selection from online sites. An internet search for cancer hats will bring you to sites like Hats for You, Topsy Turban and Hats with Heart that offer plenty of styles, colors and fabrics.

I did not opt for a wig. Everyone told me they were hot and itchy and I didn’t really have any place to go where a comfortable cap or cute scarf would not suffice.

It will be months after you stop your chemo before your hair will grow to a length where you feel confident not wearing a hat. 

Hair grows back. I was told that over and over by my doctors.

But I wanted to know one thing: When?

Bald with cute fall scarf

After my second round of chemo, in preparation for my stem cell transplant, I had to have total-body irradiation twice a day for four days. The radiologist had told me the treatment would make me lose myhair. 

“I’ve already lost it,” I told him, pointing to my stylish cotton cap.

No, he said, ALL of it.

And I did.

When the only hair on my body was one eyebrow on the left side and two on the right, I looked weird but didn’t cut them. Three hairs were something.

I wondered when the rest were coming back.

After my bone marrow transplant was successful, I made frequent visits back to the doctor to check on my progress.

Fortunately, I was progressing slowly. The mouth sores were fading. My immune system was getting back to normal. But I asked the doctor when my hair would start coming in.

“It’ll grow back,” he said. 

“I know,” I said. “But when?”

He couldn’t say. Nor could a second doctor I asked. I told a nurse I wanted to know specifically because I wondered if I should invest in some scarves or hats in fall/winter colors. My summer palette wouldn’t work in the cooler months.

Yes, she said, buy cold-month colors.

And so I did, purchasing a few more scarves in gorgeous fall prints and even a red fleece cap that I wore for Christmas.

For the record, it was two months after my last chemotherapy session that I noticed teensy hairs coming out of my head. In another month, I proudly took off my Christmas hat at the family gathering to show them off. They were almost imperceptible. I had to stand in the sunlight and you had to look at a certain angle and maybe rub my head and then you could see them.

I was elated. It was a visible sign of new life. 

Six weeks later, I went capless at a public gathering, my neighbor’s Super Bowl party. And it was another few months before I lost the hats entirely.

Your “new” hair, different from your old hair, can be treated with the miracle of beauty products.

Heavy on the salt

Everyone told me my post-cancer hair might be a different texture or color. Happy to have my hair back, I found the various states amusing.  Originally a dark brown with some gray, my new hair grew in a color I called salt and pepper, heavy on the salt. 

My new eyebrows and lashes had the same color scheme. Major tip to women facing the same thing: We all know about mascara for eyelashes, but there is a fabulous invention called eyebrow mascara. Anastasia  and Blinc are brands that help my Santa brows disappear.

Matt & Laura Christmas 2012

The texture of my hair changed month to month. It was naturally curly my whole life. It first came back as sort of thick and kinky. I called it my mini-fro.  Then all the kinks relaxed and it was straight as can be. Now, nearly five years after my last chemo treatment, it is close to the texture and curl that it used to have. And miraculously (wink-wink) it's close to its original color.

Online Health Sites like CarePages and CaringBridge Provide a Huge Comfort for Patients and Caregivers

When I checked into the hospital in September 2008 for a bone marrow transplant, I was feeling OK. But I was anxious, knowing I was embarking on a month-long process that promised to bring me to the brink of death in an effort to save my life.

Perhaps it was nervous energy that prompted me to look through the binder on my nightstand. While I had been treated at UCLA for years for my lymphoma, it was my first time at the new Ronald Reagan Medical Center, so I also wanted to familiarize myself with the surroundings.

I came across a mention of CarePages, an online method to keep others aware of what was happening me. I showed it to my husband and he immediately signed up.

It turned out to be a godsend. I would highly recommend such a free online update site for anyone facing a serious health issue. 

The CarePages website says “Our mission is simple: to ensure that no one goes through a health challenge alone.”

Mission accomplished.

My husband and I felt supported during long weeks in that isolated hospital room. Because my immune system was reduced to nothing as part of the bone marrow transplant process, I couldn’t entertain many visitors (nor did I want to) and I couldn’t accept any food or flowers from the outside world. And I wasn’t accepting any phone calls.

But, over the next 30 days and beyond, when I was on my second visit to hell and making my way back for the second time, my husband and I received more than 300 encouraging messages on my CarePage from loved ones. During days when I could barely stay awake and couldn’t speak due to excruciating mouth sores extending down my throat, my husband would read me daily messages sent to his computer.

They warmed my heart.

Here’s how CarePages worked for us. A contact person, in my case my husband, signed in to create a page for me. Then he sent out a mass email to contacts informing them of the site and inviting them to sign up for updates.

Then, from my room, he would compose a message once or twice a day on his laptop. Followers would be notified when there was something new and they could check the site for updates.

The view from the UCLA hospital room

He also took photos of my room and the facility. So many people had visited and helped during my previous three-year battle with cancer as I moved from hospital to hospital and rehab facility. But this was a new place and he wanted to give them an idea of where I was. He emailed shots of the view inside my room, the view out the window and me walking around the unit. (Now you can post pictures on the CarePage itself.)

Laura Laughlin being transported for radiation

People told us they loved the view of things from our perspective. Even though they couldn’t visit, it helped them understand what was happening from my viewpoint.

And friends and family said they really appreciated being kept up on how my transplant was going. A few told us their officemates were drawn into the daily updates even though they did not know me. They were riveted to the too-real reality tale and they were rooting for me as I hit rock bottom, got the lifesaving stem cells infused and began my slow journey back to health.

CarePages and a similar site, CaringBridge began in 1997. CaringBridge was started by a woman asked by her friend to update others on the birth of a premature baby. Instead of making multiple phone calls, she started the first CaringBridge page.

Both the online health blogs offer more than updates. CarePages has links to health information, support tools and gifts. CaringBridge also offers a support planner for friends to coordinate care and tasks for the patient, such as providing meals, offering rides, taking care of pets. Tens of millions of people have visited the sites.

Here are key benefits of a website like CarePages or CaringBridge:

It’s not intrusive. I could stay connected with supporters without the phone ringing at an inopportune time.  My husband could attend to me and not be taking calls while he was in the hospital.  And friends and family could check the site day or night to see how I was doing.

It gives a caregiver something to do. I believe that through my horrible fight for my life, I had it easier than my husband and visitors. Blessedly, drugs kept me from being aware of my worst days, when I was shackled to the bed, spoke in tongues and couldn’t breathe or eat on my own. I still have no memory of them. But my dear family and friends had to watch helplessly while doctors scrambled to help me.

Laura Laughlin, with mask, taking a walk around the unit.

For the stem cell transplant, days in the hospital were excruciatingly slow as they zapped me with huge doses of chemotherapy, radiated my whole body twice a day for four days, treated an allergic reaction that made my face swell like Jabba the Hut and my skin burn with itchy welts, tried to get some liquid nutrition into my sore-covered mouth and sought the cause of my fevers and chills.

I was drugged through all of this so I did, mercifully, get some sleep. My husband was with me daily, waiting by my bed, watching my slow progress. But he had something cathartic to do besides assisting me and waiting. He  composed  updates on the computer and read messages of support out loud.

It puts things in perspective. When I came out of the experience alive and cancer-free, I could read the daily chronicle of my journey. It’s painful to read. But it’s important. It gives me a real sense of how far I’ve come and how much I am loved. 

Grrrrrr: Places that Hamper Accessibility or Don't Accommodate for the Disabled

Some establishments are very accommodating to the disabled.  I’ve mentioned a few in my previous blogs. But despite the rules imposed by the Americans with Disabilities Act , many places either do not accommodate those with mobility limitations or do it poorly.

Grrrrrr.

I ran across a few in the past few months. 

The first came when my husband wanted to take me to a concert. My Morning Jacket was playing at the Wiltern, a small theater that is described as an Art Deco architectural landmark in Los Angeles. He went to the ticketing website for Live Nation and checked the box for "wheelchair accessible" when asked if he needed accommodations.

I normally use a walker as my mobility aid, but in a situation where I have to walk a long distance, I need a wheelchair. 

The ticketing agent found two seats in the loge, upstairs, four rows back. In a live chat online during the transaction, the agent mentioned that the seats were not accessible  but said the venue would accommodate me upon arrival. My husband said: “I will be bringing my wife in a wheelchair and assume there is an elevator that will take us to the loge level.” 

The agent did not reply to this.

After the transaction was processed, my husband said this: “Just to confirm that we’d be able to take an elevator to the loge level since my wife will be in a wheelchair”

The ticketing agent replied: “I’m sorry but there aren’t elevators available at the venue.”

He told my husband to call the venue directly because they would accommodate me.

By hiring a helicopter and dropping me through the roof? Maybe they would have put me downstairs, but my husband chose a loge seat so that I could see over the standing/dancing general admission fans. We didn’t find out what the Wiltern would have done with me: a business trip prevented my husband from going. My able-bodied son took a friend to the show.

When I recently called the Wiltern, the woman who helped me said Live Nation was "wrong” to say the venue would have accommodated me.

She said they would have tried, but there was no guarantee I would get in, even though I had  a ticket. It depends, she said, on how many other patrons show up.

In other words, just as I had concluded in my efforts to get accessible tickets to a Bruce Springsteen concert, it’s a crapshoot when you are person in a wheelchair looking for access to live music shows.

During the holiday season, I had three more disappointing incidents. One came during a company party held at the historic Athenaeum guest lodge at the California Institute of Technology in Pasadena. We had reserved a room for the night, one of 24 guest rooms in the 1930s-era building. The company employee who made the reservation had requested an accessible room for me. She says the person who made the reservation assured her I would get one.

But upon checking in, after a long walk around the side of the building to find a ramp, and winding my way through dining tables and chairs to get to the check-in desk, I learned that my room was not accessible. Indeed, the clerk said, they had no accessible rooms at all.

For a lodging establishment named after Athena, the Greek goddess of wisdom, this did not seem wise to me. 

Fortunately they did have an elevator to take me to my room, which was a substantial distance away. I always bring a toilet-topper with me on out-of-town trips (a device that sits on any toilet to enable me to get on and off) because experience has shown that an accessible room might not be up to my standards. And I make sure I have a collapsible walker that can get me through narrow spaces. If it were not for that, I would not have been able to even get in to the bathroom in our room.

It was so small that the extra roll of toilet paper and the tissue box were in the main part of the room, not the restroom. I could not get into the shower.

And while there are many beautiful rooms and outdoor spots in which the Athenaeum holds functions, there was only one ladies restroom with one handicapped stall, far in the corner by the front desk.

I understand that this is an old building and a private club. But the lodging is open to the public and the establishment often hosts events. And it’s a place once visited by Albert Einstein. Having no accessible rooms and making it extra difficult for the handicapped doesn’t seem too genius to me.

Grrrrrr.

Also in December we were invited to attend a wedding in Phoenix of a good friend of ours. He and the bride-to-be had reserved a block of rooms at the historic Arizona Biltmore at a reduced rate. A shuttle was provided from the Biltmore to the wedding site.

We called the hotel early on to make our reservations. But when my husband told the agent we would need an accessible room, the person said no such rooms were included in the wedding block. They had one discounted regular room left. Or we could book an accessible room for an extra $80-$100 per night. We were planning to stay five nights, so this was a steep difference. We expected better customer service from a hotel that says it is one of the best in the world.

No thanks, we said. We found an accessible room for a lower rate two miles away.

A friend of mine, who advocates for the disabled, was angry when I told her this story. “That’s illegal!” she said.

But we didn’t know that. The ADA provisions are complicated and lengthy. And there is no pocket guide to refer to when I find myself in situations like this. So I just change my plans, grumble and save the story for my next angry blog.

One place I don’t expect to find problems with accessibility is the U.S. Post Office.

After all, it is run by the federal government, which oversees the enforcement of the ADA.

But tell the feds to check out my local post office in Castaic, Calif. That office has one, count ‘em, one, disabled parking space. There is an accessible ramp leading into the office, but it’s right in front of the space. So if you don’t get the solo spot and have to park elsewhere, you must walk quite a distance until you get to the ramp.

Most times, the spot is empty.

But I was particularly galled during the busy Christmas season, when I pulled up to the office with presents to mail. I had brought along a sack to help me carry them as I used my walker. The parking space was taken. I checked: the vehicle had a valid disabled placard. I waited in my car for a spell and then drove slowly around the parking lot.

The driver never emerged from the post office.

So I parked around the corner in the lot, loaded up my bag and pushed my walker the long way around, up the ramp, into the office. I saw no disabled person. After mailing my stuff, I walked the long way back, noticing that the car was still there. 

It was then I noticed the adjacent office in the building houses a credit union. Aha! I thought, the disabled spot holder was probably in there filling out lengthy paperwork.

Who on earth designed a parking lot with a single disabled spot for a post office and a credit union?

Grrrrrrr.

Fake Blog Commenters Who Are Really Spammers Make My Disabled Life Worse

As if I don’t have enough annoying people to deal with.

Not only do I have to contend, like everybody else, with unwanted telephone solicitors, junk mail delivered by the mailman, spam delivered in my online inbox, hackers who infiltrate my email address, unknown folks who want to friend me on Facebook, Twitter followers who are creeps, but now I must read the crap written by lying anonymous commenters on my blog.

I know the other annoyances don’t seem fair to everyone else. But this one in particular rankles me. I became a blogger because I’m a writer at heart and because I had been through a horrific near-death fight with cancer -- with the emphasis on “been through." I came out the other side of this nightmarish experience full of opinions on a number of things: life, sickness, disability, the medical profession, to name a few. To use a trite totally overused phrase, I came from a good place when I decided to enter the blogosphere.

And while it is still physically difficult for me to post a blog more than once a month (just sitting and typing is extremely taxing on my battered body), I do it for two reasons: I enjoy writing and I truly believe my observations can help people navigate through illness and disability and aging or at least offer a new perspective on such things.

I don’t enjoy sitting (in pain) and reading such tripe as:

Thanks in support of sharing such a fastidious opinion, article is fastidious, thats why i have read it entirely

I can’t just ignore these comments. Because I moderate them. Which means any Tom, Dick, or Harry can’t post on my blogsite without me reading through their comments and approving them.

While you have the option of using your name or posting as Anonymous, anything you write goes into my email account so I can review what you’ve said and decide to publish it on my website or not. Some of my friends do post as Anonymous, usually because they can’t figure out how to post using their real names. (Hey, when you write a blog about aging and disability, not every reader is technologically adept.)

This system is designed to keep out the blog spam from appearing on my website.

And it does.

But it also means I must open up each email that says “Anonymous” has commented on my blog. And I must read through their words, then tag the comment as spam, alerting Google, my blog adminstrator, not to publish it.  Then I must delete it to get it out of my email box. Did I mention that it hurts me to sit up at the computer? I get several of these fake comments a day. But I only average one or two blog posts a month. I’m spending more time on these intrusions into my world than I am actually writing what I want to write. 

When I first started receiving such comments a few months ago, I found them mildly amusing.

Kind of like when you get a particularly outrageous spam asking you to buy the latest penis enhancement device or contact a Nigerian dude to cash in millions of dollars.

Some comments just cracked me up by their poor grammar and spelling. I imagined chimpanzees writing in a room full of computers when I read this one.

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And there was this gem:

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Some have farfetched or unintelligible compliments like “Fantastic goods from you, man” and “I am gonna watch out for brussels.” Some sound believable like  “Wonderful post. Keep up the great writing.”

But it’s easy to tell the real compliments from the fake ones by the telltale final line of each comment, directing me to visit a blog or website. These can be on any number of subjects, like nail fungus photos, loans, the stock market, love spells that work immediately, breast enlargement Bangkok, shoes for nurses and some  foreign words I can’t translate. 

And although I’ve written more than 45  blog posts since I went online last year, all these comments are about two of my pieces: the one I wrote about how it was impossible to get accessible tickets to see Bruce Springsteen  and one in which I gave my Handi Awards  to places with accommodations that  actually made my disabled life a little easier.

I'm not sure how the spammers latched on to these two, but they have bombarded me with fake comments. While they are all flattering, some offer constructive  criticism: one said my headline was “a little vanilla”, another suggested I put photos or videos on my site (I do have photos) and another suggested I add a “donate” button to my site.

Many claim they learned about my blog from a family member or friend, which I think is supposed to make their comments more believable. One sounded like the type of vague sentences you find in fortune cookies:

Truly when someone doesn't be aware of after that its up to other visitors that they will assist, so here it happens.

Thanks for sharing.

I got another that reminded me of chimpanzees in a room on amphetamines:

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That’s not a typo. It ends there and it asked me to check out a link about “today stock market.”

No, thank you. I’ve got more emails to read. Someone who wants to remain anonymous has posted a comment on my blog.