Why Hair Loss is a Loss

Here I am writing about hair loss . . . again.

I wish I didn’t feel the need. The people I want to reach with this post won’t find it, have an interest in it, or read it. These, however, are the people who have motivated me to write it. Try, try again as the old adage goes.

Hair loss is grieved every single time it happens. It doesn’t matter if it’s happened before. You don’t grieve a loved one or a pet only once. Hair is not human or a beloved pet, but it is a part of you and your identity that is gone.

Hair loss angers me. Every time it happens, I feel the hurt more deeply. Old wounds open. Physical wounds take longer to heal when cancer treatment causes compromised immune systems. Right now, I have a mosquito bite that’s taking its sweet time disappearing. I think it’s as equally true for the emotional wounds we experience. This includes wounds caused by hair loss. They take their sweet time, too.

Enhertu has caused this a dismal fourth time for me. It has thinned enough to see my scalp in places. It isn’t a total loss, but it is more than enough. More than enough to feel the anger inside. I still have hair, but my appearance has changed. I don’t look like myself. I look like an old man. I can just barely make the cut and not wear a wig. I’m not sure if I’d be more comfortable wearing one or not.

As I sit again with this loss, old feelings and new realizations have surfaced.

Old Feelings

Hair loss is utterly unfair.

Unfair sounds like I’m whining. So much in life is unfair. Everything in cancer is unfair. Let me share a little about how I feel this time. I went through something similar in January. It was winter. I wore hats outside and I didn’t socialize indoors. No one really knew what I looked like except for at my oncology appointments. Hair filled in by springtime. New hair is soft like a cloud made of down feathers. Somehow it provided hope in my life. It showed progress. It needed shaping but that wasn’t to be. Along with a switch to a different treatment, that softness began filling my comb each morning almost three weeks to the day of starting a new treatment.

And it just kept coming. Every morning there was more. It showed up on my clothes. Hair covered pillows. I’d find it in my food or in my mouth. It was everywhere except the one place I expected it to be. I was reminded every moment of the day what was happening. To be clear, I don’t need the reminders. I know I have metastatic cancer.

Hair loss is uncomfortable.

Many don’t understand that a person’s scalp hurts when hair falls out. How could they if they haven’t experienced it first-hand? My scalp itches like crazy. I am not supposed to use products to make it feel better because it may aggravate the follicles and cause hair to fall out. Yes, I’m still trying to follow the rules of scalp cooling even though I wonder if there is a point.

I have no control over it.

Loss of control angers me a lot. Losing hair visually mirrors the lack of control with treatments, efficacy, and side effects. I’m still doing PAXMAN scalp cooling as it is to spur faster regrowth even with loss (thinning, shedding). The cap fits me well. I manage the cold. As I said, I follow all the rules. I’ve made a giant effort to hold on to my hair.

And I can’t control it.

I can’t control cancer.

Hair loss is minimized by most.

“It’s just hair.”

“It will grow back.”

“You have some really nice wigs.”

“You have a nicely shaped head.”

“I don’t know why it’s bothering you so this time.”

Again, these comments come from people who don’t understand what it is like to lose hair.

I DON’T KNOW IF I’LL EVER HAVE IT BACK IN A WAY I FIND BEAUTIFUL AGAIN.

Please think about that the next time you feel like cheering me up with a helpful opinion.

It may never grow back and fill in if I am on some hair stealing treatment forever. But I have some really nice wigs. That makes everything better, right? The intent hopefully is to make me feel better. The opposite happens. I feel minimized.

It’s also possible these comments are meant to make the other person feel better. My hair loss is hard for other people apparently.

“I’m so sorry you are going through this again.” That’s what a person can say.

Identity issues accompany hair loss.

I don’t feel WHOLE without my hair. It isn’t about vanity. Something is missing. And it’s obvious. I understand I am more than my hair. Hair is part of a person’s style. You get to choose whether it’s long or short, colored or natural, worn up or down, accessorized or not, or even shaved. Chemo induced hair loss takes away those choices.

My confidence is shot. I don’t even want to go out to my mailbox because I don’t want to be seen, let alone have a conversation with my neighbors about how I’m doing. I recently declined a party invitation that I probably shouldn’t have gone to anyway because I didn’t feel pretty. I am not filling up my largeness and feel so small. The hair thinning has almost stopped. It’s super short with a few thin patches here and there. The damage is done. The anger remains.

New Realizations

Hair loss anger transfers to other losses of mine, and anger I still have about them. My mother suffered as she got worse and worse before she died from metastatic breast cancer. That feeling of helplessness and lack of control is overwhelming. Even though retiring early was best for my health, losing something that I had put over twenty years of energy into felt like a death. I confidently can say I was good at what I did. I touched lives positively and that has vanished. Some friendships have vanished too. I suppose I have changed. There are some mundane topics I simply don’t care about. It hurts to be ignored. Relationships change. I still feel cut off and isolated, forgotten.

Of course, there is anger for all the deaths caused by metastatic cancer and lack of more effective treatments. Over 40,000 men and women in the U.S. will die this year from MBC.

So, it isn’t just hair.

It’s the pain from the loss of my mother.

It’s the loss of my career.

It’s deep grief over the loss of my health.

It’s all of the things in the cancer world that I have no control over.

Hurt, frustration, fear, and sadness all bubble over into anger because cancer deserves to be called out for all it’s done. For me, it’s called out through hair loss.

It’s visual grief for all these other anger sources that have nothing tangible for me to direct the anger toward. My wounds take a long time to heal, if they heal at all.

Time does not heal all wounds.

Hair growth doesn’t either.

Phase of Treatment: Angry

Prepare to read a brief rant.

Every day there is something that pisses me off. One day it was fishing from a friend whether there was anything I wanted to share with her. No. The next day, it was my office visit that needed to be documented before I start a new treatment which is also a trial. It was mainly okay. There was a little burning when one of the phlebotomists stabbed me for labs. I had to drive back to the hospital for the drug drop off to pick up my new meds. They weren’t going to arrive in the mail that day as planned. I didn’t want to wait yet another day to start. I’m close so it’s convenient.

Yet, there are quite a few days I’d like to throttle someone. There are days I struggle.

I also hopped onto MyChart to see what had been decided on changing some nausea meds since my beloved ondansetron may conflict with my new treatment. I clicked on the tab to read my visit notes. There was a new word next to the heading that reads Phase of Treatment – Palliative.

WHAT?

I looked back at other visit notes and the treatment name was actually listed. The time before this the words “deciding what’s next” was written.

Palliative makes me angry. I know it is supportive care for a patient at any stage of illness. It is not end of life care even though many people use the two interchangeably. Hospice is end of life care and can include palliative care.

BUT WHAT THE HECK?

First of all, this change was never discussed with me. Since I am the patient and I matter, having a conversation about a change in terminology would have been appropriate, maybe even required. I could have opposed it from the start. Secondly, there is nothing palliative that I am being offered at my cancer center. Nothing. I have been in charge of all of my supportive care myself. This has included massage, acupuncture, sauna, working with a fitness coach, therapy, Reiki, spiritual work, supplements, and other supportive care. Even the cold capping had been my responsibility. I paid for it. I brought the cap and my supplies. They operated the machine.

If anything, I have felt at times unsupported with recent developments.

I think ANGRY would be the current best descriptor to go next to phase of treatment.

I replied through MyChart to my NP with whom I had my visit.

I asked in writing it be removed.

This is part of my medical record and it’s false. I am receiving treatment. They haven’t provided anything palliative. I don’t want someone unfamiliar to read it and make assumptions about where I am in my experience that could cause them not to offer me something or cause me not to qualify for something down the road. If it isn’t removed, a call to Patient Services may be warranted.

Let me be clear that there is nothing wrong with the term palliative. It can provide a lot of needed support and services. My beef is I am in charge of my own care and fully independent. My cancer center does not get to assign this term to me, particularly when they haven’t provided any related support and services.

So what happened?

I received a call this morning from my NP. We talked about a new nausea med I would try. Then we got around to the whole palliative issue. There is a new template in place for notes. One of the changes are boxes that are checked to describe the phase of treatment. Here are the choices:

Adjuvant

Neoadjuvant

Observational surveillance  (when no other treatment is available or chosen)

Palliative

Other

I explained all my reasons I wrote about above and spoke my mind. She explained the choices of boxes. Palliative means “active treatment for metastatic disease” in their world. This differs massively from the supportive care definition. She said others reviewing my records from different treatment facilities would know what it meant and it wouldn’t exclude me from a trial or other treatment down the road. I don’t think either of us can know that for sure.

I said I’d be more comfortable with “other,” but it isn’t being changed. I will hold off on Patient Services because in the grand scheme of things this may be a small deal rather than a big deal. Being identified as “other” may raise more red flags. I believe I won’t be the only one asking why their treatment is being labeled as palliative. Perhaps a box specific for MBC is needed.

I have my answer. My brief rant is done.

What does palliative mean to you?

Merchandising Cancer

I am pretty sure I’ll offend people today.

I offend myself. I have reservations if I should even post what I’ve written. It looks like I have despite my doubts.

I know my thoughts surrounding merchandising cancer have an angry tone. I am not sorry for it and won’t apologize. I get to feel angry that people make money off a disease that kills. I get to feel angry that people buy t-shirts and mugs rather than donate directly to research. I get to feel angry that I put myself through agony in an effort to change even one person’s attitude about breast cancer merchandise.

Offensive Section

Are you someone who feels okay with pink ribbon shirts? Somehow these are big business whereas merchandising other demographics would be abominations.

Think about these scenarios:

Alcoholism and drug addiction merchandise. Those who conquer these demons work hard every single day. It just isn’t necessary to wear their sobriety on their sleeve. Chips are awarded as small recognition for major achievements. The first chip is earned after 24 hours. It’s not a market for profit. April is designated as Alcohol Awareness Month but it doesn’t garner the same kind of attention that cold beer at sporting events attracts.

Where are the COVID shirts? It’s current and global. Or would those be in poor taste?

Yes, they would be in horrible taste. Sadly, there probably will be some that eventually surface. Maybe they already have. The 200,000+ who have died won’t be given a second thought. The global death toll has topped over a million.

Where are the shirts featuring funeral homes, coffins, or grave markers? We all will use these in some form or another at some point. Why not celebrate it with cute shirts? People wouldn’t have to worry about what to wear to funerals. This captive audience isn’t being targeted.

Because it’s wrong, offensive, sick, and unthinkable.

Pinkwashing

Pinkwashing is when a company uses breast cancer to promote itself and its products or services. Often there is no support of breast cancer charities at all.

None of what I suggested should be merchandised. Somehow though, it’s allowable to profit off cancer.

You may see pink. I see death. I see the coffins and the funerals. I see visits to cemeteries. I don’t understand why someone needs a shirt to celebrate every day in October. I have read such stories from people who own a pink shirt to wear each day in the name of awareness.

A t-shirt typically is priced around $25. It totals $775 if you have a different one for each day in October. Ask for a donation to cancer research and it sounds like a bizarre idea to some because nothing tangible is gained from donating.

Facebook Comments

I see too many ads on Facebook that have around 2 thousand comments. Merchandising cancer is a business, pure and simple.

 If two thousand people put $25 each toward metastatic breast cancer research, it would total $50,000.

The following are actual comments from Facebook with names removed. They all push my buttons in some form. My takeaway is there are an awful lot of people who easily fall prey to a pretty pink product and pink messaging and all the pinkwashing that Pinktober brings.

Sending prayers to all my tired 6 years ago but I won …hang in there lady’s you can beat it to

(We all make an occasional typo, but lack of punctuation and correct grammar makes this hard to decipher. This is how the comment was written word for word.)

Be strong you! You can order this shirt here:

Omg love this….. it’s so true!!9 years and counting.

Love this shirt! I need this!!!!!

I need this for October which is breast cancer awareness month

My daughter is fighting right now she has her last chemo treatment on the 17th this is what she would say. I just pray we can say it’s gone and she can ring that bell… god bless you all ❤️❤️

OMG I NEED THIS SHIRT!!!!

So cute!

Beautiful

Fight!Fight!Fight!!!!

ABSOLUTELY love this, I’m a 35plus year Survivor, I’m getting this 

I am in that fight myself, but I have God on my side.

Quite a few just type words like blessings, prayers, hugs, or use several prayer and heart emojis.

There are a couple emojis I have in mind that I am tempted to use. Yes, those.

I’ve ranted on a few of these sites out of frustration and anger. I don’t think it does much. Direct replies to others’ comments are my new strategy. By focusing on individuals, I hope to make a difference one by one. Information presented without my angry tone may be more effective. I don’t mind if anyone reading wants to join me and use my comments.

Here are a few of my attempts:

I can understand if wearing a shirt helps you feel strong right now. None of the proceeds from these shirts go to breast cancer research. I feel strong when I advocate and donate for more research.

Have you considered donating to breast cancer research? Thank you if you already have.

Nothing from sales goes towards research. Nothing! If two thousand people put $25 each toward metastatic breast cancer research that would total $50,000. Is wearing a “cute” shirt that “you have to have” really the way you want to go? There’s nothing cute about cancer. Having this shirt does nothing for research. Many thanks if you’ve donated to research. Always check where your contributions go and how they are used.

A more recent trend has been for people to comment on their breast cancer status and their diagnosis. There is no mention of their interest or thoughts on the advertised shirt. The comment is entirely focused on their personal experience. These folks are looking for a support group. I fail to see the connection to an ad campaign where their experience has not been solicited. These comments usually get a comment from the company as a reply with a link to order the shirt. That is really inappropriate. It’s especially low when someone has commented someone died from cancer and it’s clear they are in pain.

Businesses profit off cancer. They don’t care.

A charity or fundraiser makes money to benefit cancer care or research. They do care.

Is there a place for pink?

Are all shirts and other pink merchandise inherently bad? No. I will admit there are a few I like that convey hope. I still won’t order one based on principle and my goal to support research. I understand there are people who buy them in the name of advocacy and believe they are promoting awareness by wearing them. Maybe they have. I have yet to read a valuable comment that connects wearing the shirt to advocacy plans.

I am not against awareness. Walks and runs are important. They give hope and a sense of agency. They raise money. Fundraiser dinners and events do the same thing. Awareness must be tied to action that directly supports the cause and purpose at hand.

I am also not against pink. There are several women I know who have used it for the right reasons and recognize the metastatic community is part of their work. I am grateful for them.

If t-shirts were the answer, I would have been handed one upon diagnosis and sent on my merry way. Pinkwashing makes me blue. Mostly red with anger. Merchandise isn’t lifesaving. Merchandise lines the pockets of the business executives. Merchandise follows demand. I dream of the day when there is no demand because there are cures for all cancers.

Research can save lives.

Not pink.