Hair!

 Hi guys! It’s me Soulful Sunflower🌻

I’m trying to get ahead so I can write more.. but since I kind of just write to write and explain and share, it takes me longer than I thought. To be quite honest chemo brain is very real, but it’s more like cancer brain. Once you hear you have cancer, and you’re going to have your life stopped so you can get treated, you hear nothing else for a bit. I guess for someone who hasn’t experienced a life changing event I’d say it’s like a fog.. really foggy. And it lasts for as long you let it!! I try to get back in a groove. Get up, do 30 minutes of exercise, and then if I lay in bed all day I’m not too upset. 

But after 3rd chemo I’m still doing ok. I want to share more about hair. I don’t know what hair means to everyone but I’d love for people to share or comment on my blog and tell me what their hair means to them. Do you like your hair? Do you style your hair? Color it? Keep it short? Love it long, is it thick? Circle? Straight? Do you use lots of product or heat? 

For me, I didn’t really like my curly hair. It’s frizzy, and curly, takes forever to dry, and always sort of seemed annoying. But now... it’s almost like the only thing I hold on to. Is my hair. It makes me feel like I look healthy. Hair is defining whether or not someone will stare at me when I’m out, or know that I have cancer, when sometimes I want everyone to know. I want people to be kinder to me, maybe that’s selfish or vain. But that’s how I feel. I can’t explain it. I don’t want to complain what’s going on, because I am so grateful that after 3 treatments and 20 days after my first chemo, I still have hair on my head. paxman, the company I am using for scalp cooling and I will post the link for everyone to look at, is expensive. 2200$ expensive and not a lot of insurance will cover it. But to me, my hair will make me feel normal. So Paxman, or scalp cooling has given me hope. I joined a Facebook group, met someone who has literally saved me. She is young like me and she’s about 9 treatments ahead of me and just to have connected with someone going through all the weird body changes and hair, etc. hair to some is to be able to keep things private, it also makes you feel healthy, or it lets you keep feeling like who you are when everything else makes you feel sick. It’s so hard to say what it means to everyone, but I want to share my experience as I think this part is what everyone says is the hardest. And it was one part that my mom just couldn’t take.

So I’m on day 20, and I shed everyday. They say that we should focus on the hair we still have on our head. So I pray everyday that I have enough hair to feel as normal as possible. It won’t work for everyone single person and it really isn’t 100 successful as we lose anywhere from 100-150 hairs everyday without chemotherapy buttttt it can give a lot of people hope depending on their treatment. I am on paclitaxol and carboplatnim. I believe it’s the taxol that causes alopecia. One of the many side effects:) LOL 

I go every Tuesday, and I get both chemo’s. But before treatment they draw my blood, and I soak my scalp. I mean SOAK. When your hair/scalp is really wet it’s the best for the cold cap. So you soak your hair, then I put conditioner on, and then I  add one layer of the cap, and that needs to lay perfectly flat. A lot of people experience bald spots, and that is still something that can happen to me. I don’t want anyone to think this stuff cant still happen, but I want to explain the process in hopes of awareness! So you put one gel looking cap on, then you put the top part on which hooks up into the machine that keeps your head cool. So the top cap helps hold the cap on really tight. What this does is protects the hair follicle from the chemo reaching it by freezing your head. First 10 mins or so are not fun, but it is NOT unbearable. They also give me Ativan for my anxiety and that really helps the cap to be bearable. The cap needs to be really tight, and this part scares me because I need an XS cap, but they don’t make that size. I happen to have a small head LOL needed custom made helmets for horse riding back in the day 😂😂 regardless what matters is my whole scalp stays freezing. It starts at premeds for one hour, then lasts through all your chemo doses and the other important part is you can only take 8 mins or less to use the restroom. I’m so sleepy it turns out to be ok!! Then I usually stay 2 full hours of cooling. The other brand I was going to use is called penguin caps. It is all dependent on you using them yourself and changing them out and buying dry ice. Although I would have done whatever it takes, the Paxman felt overall more bearable to be able to sleep through treatment instead of waking up more. I was told that the reason penguin has such good results is because you wear the caps longer. So I asked my facility where my treatment is to stay as long as I possibly can freezing. And it’s not even the cold, but when your time is done you really do want to leave LOl. Everytime we turn the corner to the cancer facility I want to jump out of my skin and find someone to volunteer as tribute to do it for me.. 😭😭 anyways, I am so grateful that I still have hair on my head. I still wake up in a panic that it will all be gone, and there is a chance that can all still happen, but I try not to complain and I really try to just be thankful for this opportunity to try and normalize the crap going on.. it hasn’t been easy, but my family and friends and everyone who reaches out to me has literally been amazing. Thank you so much for everything! If you have more questions please please reach out to me personally or publicly on the blog :)

A few other things: my scalp itches a lot, and sort of hurts at times, my hair has to be brushed 2x a day, you only wash your hair 1-2x a week- I chose 1x a week. My hair looks greasy all the time, but I’m thankful for hair, so it’s ok. I use beauty counter shampoo and conditioner  and Paxman conditioner. I don’t use any heat, or any product. I sleep on a silk pillowcase and I use silk or velvet scrunchies. I try to be really gentle with my hair, and not mess with it- that’s hard, and I don’t really recognize myself in the mirror. But end of day- I am still alive, and I am focusing on the hair I still have🌻❤️

https://paxmanscalpcooling.com/

Another brand I want to share that is chemo safe and good for dry skin is : https://oseamalibu.com/

And a brand I was just told about for clean hair products is: https://innersensebeauty.com/

I just purchased collective labs for hair loss and they are also chemo safe! :

https://www.collectivelabs.com/

Love yours truly,

Soulful Sunflower 🌻