My current chemotherapy is oral. Oral chemos are common with metastatic cancer. My veins are happy to hear this; after my original surgeries and chemo the only usable veins I have are in the top of my right hand. All bloodwork and IVs for surgeries and drug infusions must be placed there. It’s not easy and takes planning at each visit what vein should be used for what purpose. When the time comes to start an IV chemo in the future I’ll need a port.
Oral chemo is more convenient, of course. The one I’m on now used to be an IV that needed to be administered over the course of days, so patients would need to be on an IV pump during that time. Obviously, swallowing pills and getting the same drug is better for the patient’s quality of life. I’m glad I am able to use the oral version.
For most people, the prospect of losing all of their hair is disturbing. Not just on your head, but eyebrows, eyelashes, all of it. I wrote this for a friend a few years ago. Now I have another friend about to start chemo this week and I wanted to share it again. Thinking of you, Amy.
……………………………….
originally published September 12, 2009
My friend Andrea found out she needs to have chemo. I cried a lot the day I found that out. Last night she emailed me that she was thinking about the whole “losing her hair” thing. She has gorgeous hair. Thick. Straight. Reddish-brown, in the sun I’d say it has a honey shine in it. She usually wears it back in a ponytail, as she says, “taking it for granted.”
I started writing her back to tell her that focusing on her hair wasn’t silly. There are many things about cancer that are real worries. One of them is going bald. Especially for a woman. And as I typed to her I realized the words were flowing fast and furious.
I realized all the things people had said to me when I was worried about losing my hair and all of the things people had said to me after it eventually happened.
Everyone wants to reassure you that it isn’t as bad as you think it is.
Some days you convince yourself it isn’t that bad.
Some days you are sure they are all lying to you.
Either way, you get through the days.
The day you take that hat or wig or scarf off and wear your newly-grown stubble or “mouse fur” out in public is a great day (My first hair was so fine and soft and thin that it didn’t resemble hair at all… I called it mouse fur because while it blissfully covered my head and was dark, it couldn’t be cut or styled).
So, for my friend, and for other women who are getting ready to start chemo (and those who bravely walk through the world every day without hair because of alopecia and other conditions), no matter what, it matters.
No matter what anyone says…
all the things they will say:
“It’s only hair.
It’ll grow back.
You’ll look so pretty anyway.”
“With a face like yours it won’t matter.
We’ll get you a cute wig.
We’ll get great scarves.
It’ll grow back in no time.
Maybe it’ll be better after it grows in.”
“It might be curly.
It might be straight.
I know someone whose hair came in gray.
I know someone whose hair came in red.
I know someone whose hair came in black.
I know someone whose hair came in white.”
“Hers came in curly.
Hers came in straight.
Did you see hers?
It looks great.
Did you see hers?
It looks awful.”
“I like her better with short hair.
I liked her better with long hair.
You’re gonna look great.
I don’t know what I’d do.
I don’t know how you do it.
I don’t know how you’re gonna do it.”
“You are so brave.
You are so strong.
You can do it.
You can beat this.”
No matter what anyone says–
It is just going to suck.
Bigtime.
You may shed many tears over this one.
It may be harder than you thought.
I’ve heard some women say it was harder for them than the actual chemo.
Reports show women actually turn down the chemotherapy they need because they don’t want to go bald.
It’s real.
It’s hard.
But hair matters.
To us,
To our kids,
To our husbands,
To our friends.
My hair has never been the same since chemo.
I’m not alone in that.
In fact,
My hair now grows “the other way”…
My part is on the opposite side of my head than it used to be.
I think that’s kind of neat.
There’s the way my hair was B.C. (before cancer)
And the way it is now.
It is a big deal.
Don’t let anyone minimize it.
If they do, make them go shave their heads.
Not just clipper cut.
Straight razor shave it until there’s nothing left.
Then the eyebrows.
Then the eyelashes.
And then the stuff they might not think about.
Every piece of body hair.
Of course there are jokes.
And giggles.
The Brazilian wax done for you.
It’s funny.
But not so funny.
Then when your nose hairs fall out you suddenly realize how
Much you needed them.
Your nose runs constantly.
And it’s embarrassing.
Mine dripped clear liquid constantly.
I was so embarrassed.
No one had told me about that part.
I had a tissue stuffed in every pocket.
Because there were no hairs to stop the drip.
Chemo drip.
You try to imagine what it will be like.
You try to picture what you will look like bald.
You pull your hair back,
Slick it back,
Try a wig on to see what it might look like.
But nothing can prepare you.
For that crappy day,
Two weeks in.
When you scratch an itch
Or touch your head
And take away a handful of hair
Or find it on your pillow.
And the sight of it is so sad,
But so disgusting
So repulsive,
That you need it gone.
And then if you need me
You will call me.
And I will come.
And I will cut it.
Or maybe I will just come and cry with you.
And remember what it felt like.
No matter what anyone says,
It isn’t nothing.
It is something.
And even in the scheme of all of the things to be afraid of with cancer,
How you feel about losing your hair is real.
It matters.
And I remember.
Link to Twitter
Thank you, Lisa!! You are about the most honest person I have run across in my life and this subject is no exception. This is not the first time i have experienced losing all my hair. I was unfortunate back in the early 1990’s to have broken my neck. The toll it took on my trusses of long, beautiful, red hair was so traumatic. It was due not to chemo , but the necessity to wear a “halo” on my entire upper body for a year and it was TRAUMA CITY, believe me, when this cruel device first chewed up my beautiful trusses, which
had been carefully groomed by my hairrdresser once a month, taking painstaking measures to make certian it was properly cared for.
The result of losing my hair, every bit of it, was not only traumatic to me but to everyone who knew me, and they reacted about the same way then, and it was not good for my self esteem either. They never pretended to not notice, they made a very big deal out of my loss. They completely turned against me, almost the same way people ignored me after being diagnosed with breast cancer. It hurt. I had no idea what to think or how to deal with it, there are very few, if any, support groups for people in a situation such as I found myself in, so I spent a year alone, behind my locked front door, abandoned by everyone I knew. Aa a matter of fact, there are many similarities. I did not know why people deserted me, there were no nurses to talk with about my demise. It seemed everyine stopped caring all at once. Does any of this sound familiar to anyone? I had no idea I was in training for the fight of my life, but the feelings were so similar.
I guess what I am trying to say is, when no matter what the reason, if you look different, people are going to react to you differently. It does not matter if it is cancer or a broken neck, others are very insecure with their appearance — yours brings it to the forefront of their minds.
I guess I was fortunate to have gone through “losing my hair boot camp” prior to my breast cancer exoerience, I thought I knew how all this felt before — but you know what? It was not until tonight, after reading your blog, that I realized I have experienced this assault more than once and all that pain came flooding back to me. I had placed it somewhere else in my mind and had “forgotten” but now I know there are so many terifying experiences we go through and like to forget, but believe me, they still remain no matter how hard I tried to deny my pain.
I cry now, the same way I cried then.
I feel I need to express this and this is safe here….I get angry. Really upset in knowing that I pushed so much and yet she’s dead. That there were so many things that could have been done to prolong life or keep the cancer at bay but goodness in retrospect it’s like, what did they do (or not do). I am happy because I see the hope. The hope that there is positive to this ugly disease and that people can live in remission for a life time. Something went sadly wrong for my mother..maybe it was just the strokes, cause I know she was a fighter. She had 27 operations and countless “cancers” including breast…but what went wrong here 🙁 At some point when I’m emotionally ready to hear the answers I will inquire.
My hair fell out and grew back in multiple times. The first time it fell out was very upsetting. Each time it grew back in differently. I colored it for many years and this time it grew back in dark. My consolation prize for having had four bone marrow transplants ?
Thank you, Lisa.
Love you, Amy
As always, thank you, Lisa. And you are so right. I does matter. You tell yourself it doesn’t — it’s just hair — but it is a daily reminder to you and everyone else of everything else that is going on. Of the fight you are in, of the much bigger losses you are facing. And for me, at least, I was astonished at how much I had depended on my hair psychologically. I had your friend Andrea’s hair. It was beautiful and striking and I unconsciously counted on the positive response that people had to me because of it. I knew that when I walked in a room and the light hit me just right, I was impossible to miss. I secretly imagined that when strangers were captivated by my hair (which they were), it subtly influenced them to assume that all of my less visible traits were just as striking. It gave me a sense of power that I took for granted. How shallow and vain, yet how typically human. When I lost my hair, I lost my confidence. More than that, I felt I had lost my armor, my protection. I may as well have been going naked into the world. It does matter. Thank you for saying it so eloquently.
Lisa: As always, this is very powerful and beautiful. Just. Like. You.
that is knock-your-socks off powerful. Wow. thank you.
Thanks, Lisa.
There is hope for people going through chemo that do not want to lose their hair. I was faced with chemo almost two years ago for breast cancer and I just did not want to lose my long hair. It was not so much about vanity, but dignity and privacy. Just because I have cancer doesn’t mean I want to shout that out to the world. I used Penguin Cold Caps to keep my hair through chemo. I was able to live a normal life (as normal as normal is when you have cancer) all through chemo. I didn’t scream “I have cancer” when I walked in a room. I looked completely normal. My son was only 4 when I was diagnosed and he is now six. Because I kept my hair there was no real need to explain chemo. He does not know I had breast cancer or did chemo. I plan to tell him when the time is right. I know how it feels to be faced with cancer and making decisions about your treatment. I know the fear of potentially losing your hair. I don’t know what it feels like to be bald from chemo since the cold caps did their job for me. I completed chemo and was able to move on with my life with my hair! I just wanted to leave you a comment in hopes that someone reading it will know there is hope if you don’t want to lose your hair.
I would be interested to know what drug it was that you were on. Many chemo drugs will make your hair fall out no matter what you try; they are cytotoxic and even cold won’t allow you to keep it. I’m glad it worked for you with your regimen though!
I found just what I was needed, and it was enntetairing!
Get proof of insurance. ratingstake in relation to your vehicle insurance compare on prices, customer service methods. For example, a hypothetical situation. Imagine you just never know where to turn, particularly if they were specificallyofficers of the motor cycle if you have had your car has a good idea to receive quotes from at least not initially taught in schools or day dreaming of kindsconfiscation. US automobile insurance companies are offering great deals without any complication. Before choosing a policy. Insurance providers offer the same day, or if you carry low limits if you yourAny history of credit, but the trick in the United States, one can possibly find a company should provide up-to-date information about your car when you come to play the intelligentother sources of discounts so it’s worth checking tyre condition before the insurance companies only penalize you for a month to have insurance. There are many factors that affect your companyprocess. They will give you a greater sense of invulnerability. As a result, it is just one dot that is for you to enter this number as well. Insurance companies, seasonalwith each other so you can look in the post. Lower end or even less of a risk while driving that has all of the fact that the water or tocan start saving. Maintaining your car’s security systems.
The basis for early atomic rocket engines was to literally pump any working fluid right through a hot reactor to create a high impulse exhaust. It would even work with water were you so desperate, as nicely described in the movie "Destination Moon" in the early 1950's!James GreenidgeQueens NY
Although I didn’t originally offer the EF86 preamp tube nor is it on my website just yet, I can however customize the preamp circuit if needed for this particular pentode tube. Another great pentode preamp tube is the 5879. Unfortunately the 5879 is only available as a NOS tube. I hope that one day JJ, EH or Tung Sol will bring this tube back into production.The 5879 is what voices the more familiar Gibson GA40 and GA90 amplifiers. Both of these amps are monster harp amps! Contact me at my home page of Buffaloamps.com and I’ll be happy to discuss with you on building a customized amp I have to offer.
, “There is always a simple solution to every human problem. Neat, plausible and wrong.” Just saying devolution will bring in millions to help solve the transportation funding problem is fine, but it requires more than mouthing the words.My solution was found in a recent op-ed in the Pilot, start tolling as soon as you pull out of your driveway. Bosun
Viaje a Japón en el 2008 y me gustó muchisimo, la gente, ¡¡la comida!!!, sus diseños, sus tiendas.Es un viaje que recomiendo y si te atreves hazlo por libre, con una guia japones-español,te arreglas, la gente te ayuda un montón.Me he prometido volver!!!!!!
en fin era mas fácil un periodo de prueba de un par de dÃas y que caducara y no te dejara usarla sin pagarla. Pero como ya dije hay gente para todo y mas en los tiempos que corren que el que no corre vuela.
This was fabulous. Here is one more side to the story. When I was diagnosed, it had just been discovered that for the type of breast cancer I had, a doctor at MD Anderson had discovered that chemo made no difference. My doctors agreed and I loved the decision. Friends and family had strange responses to me because I wasn’t losing hair and throwing up and didn’t look like what they expected me to look like. It threw me and confused me. It was like ‘oh, I have less real cancer’ and I felt some weird kind of shame and guilt and strange reactions. It took me a long time to realize that cancer is cancer and mine is just as nasty as the next persons. If I am lucky, it won’t come back. So, the hair thing is real – lost or not. I agree with jennw – “that is knock-your-socks off powerful.”
Hi, I loved this, it is very real.
I lost all my hair to alopecia, after a couple of years it grew back. It was unnerving to lose something so minor and so important. Something so vain.
Last year I was diagnosed with breast cancer. But, no chemo for me. (Yay!) but i also found that some people felt my cancer wasn’t real, and I felt confused and a little guilty that I didn’t have to struggle as much as some, including my sister.
Now I am losing my hair, from alopecia again. It is easier this time, I am more accepting of it. And if I get those looks, the ones that say “she must have cancer”, it will be the truth, in an odd way.
In a weird way I am grateful for this hair loss, so relieved that it does not come with the other effects of chemo, happy that it is a, really, a minor glitch, not a health crisis with surgeries and radiations and fear.
Thanks for all the truths I see every time I check in here.
Beautiful. I agree: it matters deeply.
My hair has fallen out twice. I even went completely bald in the warm weather. I had long, auburn hair and loved doing things with it. I recently bought an auburn wig but I think it gives me helmet head. I need to have it styled. Yes hair matters. It is part of a woman’s pride. Now mine is short and sparse and salt and pepper. It’s at the stage where you really can’t do much with it. I miss my hair but I stopped crying over that awhile ago. Maybe now that it’s cooler I’ll et that wig out. I love the way you wrote this Lisa. I don’t understand why everyone now seems to have a friend in chemo or starting soon. Something is wrong with that picture
It absolutely matters. I love your honesty on this one. When I met my oncologist for the first time and I was told I had to lose my hair from the breast surgeon, I got on the internet and I studied which ones didn’t make you lose your hair and requested them. I appreciate that after saying to her if I believe this is the best chemo for me, could we do this course? She said, “Yes” and I liked her because she listened. I ended up doing the adriamyacin followed by the taxol and it was extremely traumatic. In fact I wouldn’t shave my head so I looked ridiculous with a little nest of dead hairs (about 20 strands). Between the loss of hair everywhere on my body and all my nails, it was really awful.
Thanks again Lisa. You write so intimately so powerfully. Hair does matter. I didn’t mind being bald but what little grew back is really weird. Just would like to get back to “normal”. But what is that?
Meg
After my second round of chemo for breast cancer, when my hair started falling out in clumps, I decided to take charge. With my head over the bathroom sink, I had my husband take his razor and start shaving. During the process, our five year-old son wandered in and immediately froze with horror at the sight. Later, he hid from me, which was understandable and at the same time completely unacceptable. I found some dinosaur tattoos, the kind you put on with water and take off with oil, and invited him to decorate my bald head. His face lit up, and he and his three year-old sister went to work. The next day on the Kindergarten playground my son grabbed my hand and ordered me to bend down so he could pull off my scarf and show his friends my cool head. That was 19 years ago and I still tear up as I write about it. Still present is the exquisite pain of knowing the fragility of existence, a reminder not to sweat the small stuff and never to take life for granted. Here’s to the joy of the moment! Thank you for the opportunity to share my story and to learn much from yours.
Thank you for this post. I don’t have cancer. I have other severe chronic illnesses. I learned a lot from this. I had never realized that you lose all the hair, including inside your nose. It makes sense, but it hadn’t occurred to me. It’s good to have that info.
Among other diseases, I have three chronic infections (Lyme, babesiosis, bartonellosis) caused by a tick bite on the back of my scalp. To get a clear view of the rash, and later, to have it biopsied, I had to keep shaving the entire back of my head (in the case of the biopsy, down to the skin). We live in an area with a huge number of ticks, and to make tick-checking easier, my partner insist we get our hair cut really short every spring. I had lost so much (ability to speak, to feed myself, to brush my own teeth, to go to the bathroom myself, etc.), and losing my hair sucked. I would sit there and cry when she cut it off. Finally last year I decided I wasn’t going to do it anymore. I know it makes tick-checking harder, but I have lost so much to this damn disease, I wasn’t going to lose my hair, too!
I have a small suggestion. It helped me when I lost mine although I can’t say I cared too much about my hair. I was in trouble and really felt that if I DIDN’T lose my hair, the chemo wasn’t working. I guess I convinced myself of that. What I did was I asked my friend who also cut hair(badly) to cut off the length about two weeks before I started chemo. It was the typical “looks great right after its cut but you can’t do a thing with it” scenario. Then, right after I had my first treatment, I went back and got an ugly short haircut. It made losing it SO much easier! I got some great laughs out of that and when it started falling out after the second treatment I had no reservations about shaving my head. Good luck to everyone going through “the process”.
[…] http://lisabadams.com/2013/01/10/day-10-no-matter-what-it-matters-the-psychological-importance-of-ha… […]
[…] As with most things, someone else has already written about this and done it better than me: I recommend a read […]
Hi Lisa,
I have just blogged myself about this very thing, and a reader suggested I check out your post about hair loss. It is lovely to read something so in sync with my feelings and emotions. Thank you for writing so honestly and beautifully.
I buzzed all my hair off two days ago after it had begun to resemble a mangy animal. It was incredibly traumatic, but liberating to regain some sort of control at a time where so much of my life is out of my control.
Kate x
thank you so much for sharing this. i am going through chemo right now and this is all so true. no one can prepare you for what symptoms you get until they actually happen. and no one can prepare you for hair loss until it happens. thank you so much for sharing this. its like my own words on the screen!