I took this photo yesterday, which happened to start off as a “good” day. I had a meeting at my kid’s school so I got up early, took a shower and wore acceptable street clothes to try and look “normal.” The day before that, not only did I look like I was severely sun burned but also felt like my entire skin was burning. Most people who saw me would probably disagree but to me I looked like I was one photo away from looking like the plague.
Most of the people I know who saw me for the first time after I started chemo are often surprised, “wow! You look great.” Sometimes it’s true because some days I look like my normal self and sometimes it’s kind of them to say so but most times they say that because they imagined worse. It’s understandable. When one hears the word “chemo,” it brings up images of sick, bald, skinny, pale, hollow and lifeless images of people. Most days not only do I look like “chemo” but also feel like “chemo.” So there’s some truth to that but there’s also images of beautiful, strong, determined, emotional and expressive people undergoing chemo too. Where are those pictures? Well, I found some as proof for you. Get your tissues ready:
What an honest and raw photo project to prove that chemo patients are way more than just their illness. What most people don’t understand is even though cancer patients may be facing a life-threatening illness, a person without cancer may not understand that the changes cancer treatments such as chemo does to a person’s physical appearance can be as painful as the illness itself and we’re not even talking about the other side effects yet. For example, to someone who doesn’t have cancer, hair loss might seem like a small, insignificant worry, perhaps even a vain one.
Hair loss is a real fear and a big deal.
For many cancer patients, myself included, losing my hair
was is one of my biggest fears. It’s nothing short of an emotionally upsetting experience waiting to unfold. I remember one of the early thoughts that entered my mind immediately after I heard the diagnosis was “OMG! I’m going to lose my hair.” I didn’t immediately ask the doctor about this for fear of appearing vain and looking like I valued my physical appearance more than my health. This began the wave of emotions ranging from shame, guilt, self-pity, shallow, vain and lack of self confidence washing over me as this thought lingered. The more I kept the fear of losing my hair a secret to myself, the more these emotions consumed me and the more anxiety I had over it.
The moment of truth.
I was curious to get to the bottom of these emotions because a part of me knows “I am bigger than this… bigger than my hair and stronger than these insignificant body image issues” that has been consuming me and I felt determined to not be consumed or defined by it. However, it consumed me and at times felt like there was nothing more to Nikki than her hair. It felt so superficial to be worrying about it as much as I did so I kept it to myself… until that day during the end of the 4th week’s chemo cycle when my doc wanted to switch drugs because my blood results didn’t show a huge decrease in my markers. I remember feeling just as stunned to hear about the drug switch as the first day of being diagnosed. My worst nightmare of losing my hair was about to come true because one of the side effects of the new drug is HAIR LOSS. I cried that day for a long time and finally shared with two people why I was so upset about switching drugs. I still did not understand why I was so upset about it. It’s just hair! At least that’s what my mind was trying to tell me in order to try and make sense out of it. It didn’t help to think that “it’s just hair” and “it’ll grow back” and “getting your health back is much more important than your hair.” These were all the things I was telling myself. I’m not even talking about someone else telling me these things because I’m not sure what I would do to you if you told me “it’s just hair” and “it’ll grow back” and “getting your health back is much more important than your hair.” My advice, don’t ever tell any cancer patient anything remotely insensitive like this about their hair, even if you have good intentions. Don’t be a dumbass. Trust me on this one.
Digging to the root cause of why hair loss is such a big deal.
When I told my BUFF, Tracy, the next morning in response to her daily “how are you this morning” messages, I finally told her. I felt like a pressure cooker allowed to cool down when it’s steam is released. Her response floored me. There I am balling out of control again over “hair.”
I’m not putting this out there to hold her accountable (lol) because I would never let her do it even in solidarity to support me for many reasons. The fact that she didn’t even hesitate to reply, within seconds, with that response helped me open a door for me to dig deeper into why I am feeling so devastated about the possibly of losing my hair. I wonder if other cancer patients may feel these same worries listed below?
Since that day texting with my BUFF up til taking the above picture the other day, I’ve learned so much about myself and uncovered some of the root causes of why hair loss, due to chemo, is such a big fear and such a big deal to me.
Here are some of the reasons that have surfaced during my reflection:
1. I’ll be recognized as chemo or as cancer… the official “stamp” of sickness. It’s like a public service announcement. How’d you like to make that announcement?
2. I’ll have to deal with the double takes and pitying glances from people while out in public. The thought of standing out like this in a crowd makes me cringe.
3. I fear I’ll look scary to the kids or that my hubby will look at me differently.
4. Damnit! All the questions I’ll have to answer and all the comments that I’ll have to filter. Sounds very energetically and emotionally draining doesn’t it?
5. The feeling of being exposed and vulnerable in this way is very daunting and triggers deep feelings. I imagine walking around like I have no barrier, completely raw, exposed and powerless. Who wants to feel like that?
6. I feel like the hair loss is the punch from reality that this whole thing is actually occurring. It’s like the final thing cancer takes away from you, along with everything else that it has already taken. So much loss is wrapped up in such an illness. But this would signify and finalize how total and complete the losses are.
7. I’m afraid I won’t recognize myself anymore. The thought of also losing my eyebrows and eyelashes triggers a bigger fear because losing these hairs will create a drastic change in my appearance. What can be more disorienting than not recognizing yourself? The face you’ve known all your life won’t even be recognizable.
8. It would be a long term reminder of this painful time in my life. Even if treatments took a short 3-4 months, it’s residue will linger on for awhile, probably 2-3 years before my hair will grow back to a manageable length. How’d you like to look in the mirror and have the past continue to literally stare at you everyday? Even though you might have beat the cancer, it’s still rearing it’s ugly head to remind you how much it took from you and how it’s shadow is still casting over you.
9. The experience of waiting for your hair to fall out is equally, if not more emotionally painful than the actual experience of it falling out.
Can you see now how losing one’s hair could be such a big deal and can trigger so many deep feelings? The final and most significant reason why I
was am so upset about losing my hair is:
10. Change. Overwhelming change.
I’ve already been feeling scared and vulnerable and then comes along the threat of losing my hair feels like the proverbial last straw. It’s overwhelming enough to have to deal with the rapid change from living life per usual one day to getting the diagnosis the next day to starting treatment the following day. The change happens faster than you can manage to take a full breath. The thought of having to face one’s appearance change so dramatically and rapidly on top of the already aggressive rate of change feels unbearable. I see how normal people can’t even cope with small changes over longer periods of time so I give myself the right to be upset about these rapid changes that having an illness like cancer causes. It’s unbearable.
Preparing myself emotionally, mentally, and physically.
I’ve read many articles and have also been told to re-focus my energy on healing and recovering instead of wasting time worrying about it or wasting energy trying to prevent it. They say, “accept it and prepare for it” because focusing on preventing it prevents you from accepting it and keeps you in denial. I nearly punched my computer screen when I read all those things. So basically, give in and hand over my locks to cancer?!!… just like a kid being bullied will hand over their lunch money to their bully?! WTF!
Right now, I can’t deny the reality of cancer but I will try my damn hardest to deny the things cancer wants to take away from me and especially will deny it the right to define me. Surely, it is not going to tell me who I am and who I am not because I know for sure that I am not one to sit by and be bullied without much fight. As I sit here now, I realize that stewing in my upset, agony and anxiety over the whole ordeal was the perfect way for me to begin preparing myself. Because I let myself feel those feelings for as long as I did, especially in solitude, allowed me to feel their depth like no one else could’ve explained. I’ve found that no matter how educated you are about when to expect the loss and how it will likely occur, you will still be shocked by the reality.
My doc told me I will most likely not lose my hair and it will only thin out. I resisted the urge to make a snarky comment and blinked a few times before my eyes could load the bullets to shoot his way. How can he be so confident in his “it will only thin out” when he can’t guarantee how I will respond to the drug. I’ve heard of others on this same drug watched their hair fall out in clumps a week after their first infusion. I thought making such blanket statements is careless and a heartless way to try to calm my worries about the situation. Nonetheless, I tried (wanted) to believe him. Thinning is better than complete loss… I suppose.
After surviving the onslaught of the first 3-4 days after infusion, I allowed myself to go there… to the place where what if I did lose all my hair. What would it feel like? Would I wear a head scarf? What about a wig? How would I look? I browsed some sites and suggestions on how to tie a head scarf. Wow! I love scarves in general and was amazed at how beautiful head scarves could be too. So I got out some of my favorites and played around a bit. It was kinda fun… although I need some help in tying some of those variations.
I felt my heart ease up a bit and the anxiety of the whole scenario loosen up a bit. It was a nice feeling… BUT it still doesn’t mean I’m ready to hand over my locks.
Finding ways to feel empowered instead of feeling helpless.
Last Friday after I got home from my infusion, the worry consumed me. I could feel every twinge, twitch and itching sensation that was occurring inside me. Perhaps some of it was mental, being driven by my anxiety of losing my hair. It finally occurred to me, “there must be something, some way to either prevent total loss or at least minimize it.” I did a quick google search and came across these things called cold caps. It’s concept was most interesting. They look like swimmer caps but are very cold. The idea is to “freeze” your scalp to constrict the blood vessels in the scalp to prohibit the chemo from damaging the hair follicles which would minimize hair loss.
As I read further, it states it’s most effective to start cold caps at the same time your chemo starts. Damnit! Too late. I cursed myself for being paralyzed by thoughts and crying over the subject earlier on instead of trying to learn more about it. Then I cursed the docs for not telling me about this. Then before I could do any more useless cursing, I succumbed to the side effects that were quickly kicking in. It knocked me out for the next 4 days. I could not think about anything else and did not care about anything else, not even my hair, except for wanting to not feel like death anymore. So I forgot about the cold caps… until…
A few days ago, Anna, who I will call my friend now cause she’s been so supportive in the My Molar Pregnancy, an online support group of others with same condition, tagged me in a beautiful picture that someone else posted about cold cap therapy. Apparently I missed the post because I was too busy dying from the aftermath of the infusion. How dare I let my hair down (it’s funny but not funny lol)! I was inspired. This woman used cold cap therapy when she switched to the same drug I was now on and had great success with it and minimal loss.
I called the company right away to ask if it’s too late for me to try it for my next infusion. He gave me a much better response than the heartless one my doc gave me, “I don’t know how you’re going to respond. Some people have great success when they started it at the same time their chemo started. Some people didn’t see a difference even though they started early. Some people found us after their first round and gave it a try and didn’t lose all of their hair as they expected. It can also depend on how much you’ve already lost from your first round.” I asked him, “so what you’re saying is you’ve had clients who started late and didn’t lose all their hair even though they were expected to? And with the drug that I’m on, there’s a possibility that it these cold caps can still help?” He said, “yes ma’am but we can’t guarantee it…” Before we could even finish his sentence, I was ready to order the equipment not because of the “possibility” but because it gave me a sense of control. I felt this small action (any action for that matter) that I can take was important enough to take. It helps me to feel like I was still in the game and this small step helped me feel empowered and I could feel the noose around my neck loosen a bit further.
If you’re interested… I chose to go with Arctic Cold Caps (https://arcticcoldcaps.com). The lady who shared said she used Penguin Cold Caps. She mentioned that her hair thinned most at the back and she wondered if it was because the caps didn’t fit as well in the back so the scalp was not as cooled than the rest of her head. I’m excited to try and rest assured, I am not putting all my hopes in this one thing. I’ve made sure that I understand this may not work and am not going to allow my heart to be that vulnerable. However my heart is feeling much lighter knowing that there is something for us to try. And yes, this is better than sitting here crying and feeling helpless.
Finally, I wanted to share a remedy that I did a few days ago to help combat the burning sensation on my scalp that has slowly been increasing since I got the infusion. It’s a strange and painful feeling to describe but could easily compare it to a really terrible sun burn but from the inside. I am starting to break out all over my head, similar to those painful breakouts you had when you were a teen. Remember those?
I reached for my essential oils. I knew rosemary essential oil was great for hair health and did some searching for some others and ended up blending these EOs to help soothe my scalp:
Gently massage the oil blend all over the scalp. Then take a natural bristle brush, boar bristle is highly recommended, to gently brush a distance of about 1″ from scalp to hair shaft. This will help stimulate the hair follicles and help distribute the oils evenly. You could brush all the way down the length of your hair if you want. After applying the whole concoction and brushing adequently, I wrapped my head in a towel for 30 minutes. The cooling sensation from the peppermint is immediately felt…. Ahhhhh! After 30 minutes, wash the hair per usual, being extra gentle while combing and let air dry. My head finally stopped pulsating with that burning sensation, felt so clean and my hair felt extra soft. It’s now day 3 after this EO concoction and I’m starting to feel the heat again so I’ll be doing this again for sure.
Here’s a little more info about the essential oils I used:
Rosemary EO has anti-dandruff properties, helps regulate sebum glands and clears up clogged pores that cause acne and itchy scalp. It’s also invigorates the scalp and helps combat premature graying and thinning of hair.
Lavender EO is moisturizing, helps balance sebum production, has antiseptic and antimicrobial properties to help scalp acne and as we know is also very calming and sedative.
Vetiver EO is like lavender’s cousin with it’s cooling effect and helps reduce hair loss resulting from excessive heat or high stress levels in the body.
Peppermint EO is very cooling as well and helps improve blood flow to the area, opens up clogged pores and encourages normal flow of skin oils which is very useful for rejuvenating hair follicles and promoting hair growth.
Clary Sage EO is known for it’s phytoestrogen property which could help with hair growth and/or prevent premature balding.
Melaleuca EO is known for it’s cleansing properties on skin and hair. It helps moisturize the scalp and relieves dryness and itching, works deep into the hair follicles, and helps with scalp acne.
Cedarwood EO is often used to treat hair loss and dandruff as it can help balance oil secretions, stimulates the hair follicles and has antiseptic properties. It is commonly used in helping to reverse alopecia.
That’s it for now. End of week 6.
Week 7 is a “rest” week, meaning no infusion to help me rebound from the aftermath of the 6th cycle of chemo.
As always, thank you for being here with me. Your thoughts and prayers are deeply felt. I would love to hear from you, especially if you have things to share in regards to hair loss or if you’re a cancer patient who’s gone through this or know of someone whose gone through this type of ordeal. If you have any questions about essential oils, I’m here for you.