How to save your hair while doing chemo especially TCHP

OK, let me start from the beginning.

I’ve never met anyone with thicker hair than me. One of my favorite party tricks is getting someone to grab my ponytail and watch their jaw inevitably drop. My abundance of hair has been a trademark part of my personality my entire life. My name is Sienna because my mom’s best friend’s cat was named Sienna and we had the same fur color.

Shortly after I was born, the original Sienna was being transported by the friend’s boyfriend in his car with a bunch of other cats. Inexplicably, she wasn’t in a carrier and he rolled the windows down and she escaped. Another one of the cats escaped but they were found and Sienna was not.

animated

I identify with Sienna the Cat’s desire to escape at all costs. I also identify with Ferdinand the Bull. I am pretty easy going as long as I’m fed and outside. But as soon as something stings me, I definitely morph into a ferocious, formidable beast.

All of this is to say – I am a loving person and that is my highest self and I’m very in tune with that part of me but I can also be an unfortunately proud and petty person who hates to be confined or attacked or humiliated in any way. I mean I really hate it and will go to great lengths to make sure everyone knows how much I hate it.

Does part of me wish I could be more patient and relaxed about life not only when things are easy but also when I get annoyed? Sure.

But, circling back, do I wish I was okay with enduring losing all of my hair like a humble accepting saint person? No. I’m an excitable psychopath who can freeze my head for ten hours at a time because of years of endurance training during my semi Siberian years plus the fact that this brain runs super hot and wild anyway.

And I am 100% totally fine with that. And I hope I can help other psychopaths save their hair too! Here is the way I did it …

First, I did research on the best way to save your hair during chemo. Not cheapest, not easiest – the most effective way. Cold caps are the only way but there are a lot of different options out there.

I chose Penguin Cold Caps because they are the old school classic choice. The company has been saving people’s hair for over twenty years in England. The two downsides are they are really expensive and you need someone to help you do it. The two upsides are that they actually work and you will never be alone at chemo!

 

So, about a month after I had my mastectomy, I ordered Penguin Cold Caps. You just go on their website and fill in all your details once you know the exact chemo regimen you will be on. It is pricey! I put it all on a credit card. I had to pay a $500 deposit and then I’ve had to pay $500 each month to rent the cap system.I also pay almost a $100 each time I have to buy dry ice.

The expense of getting cancer sucks and adding a few thousand dollars on top of everything else sucks too. But it has been so worth it to me! There are cheaper ways to do it but this was the method I felt comfortable with and like Colombian people say – the cheap stuff ends up being the expensive stuff.

My beautiful friend Roxanne (my wife’s best friend since she was two!) picked the caps up for me in Silicon Valley so I didn’t have to pay any shipping charges. Penguin has reps all over the US but they can also ship if you live somewhere really remote. Or if you are like me you can ask your really nice friend to bring them to your wilderness bunker.

Once I had the caps and calculated times, I definitely got a little scared about the cold. I have been felt extremely grateful for my east coast- ness many times since moving to California. Such a good combination of fighting spirit and cold tolerance.

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But yeah I’m no supergirl, it is as tiring and insane as it sounds. Even more tiring, we have to change the caps every 25 minutes. The first two times Lucy and Ines also came to help since we weren’t sure how many people it would take to keep the system going. But one Dutchman has been more than enough for the final four infusions. Plus when Lucy came we made so much noise partying that they asked us quiet down which was hilarious. Side note: never give me Benadryl.

The morning of my treatment we buy 50 lbs of dry ice at a Safeway on Mission that has a convenient little freezer right by the checkout area. The cashier almost always asks why we are buying that much dry ice at 9 am. When I tell them I am doing chemo and have to freeze my head, they can’t believe it but are also super supportive which is sweet.

The first time it happened, a woman behind me in line who was totally annoyed at first, opened up and told me she had had skin cancer on her face. If she hadn’t mentioned it, I would not have been able to tell. But then I could see the slight stretch and scar. Of course, I beamed and said, “You look amazing!” I could see the look in her eyes 👀 💔

The cashier usually shouts something like, “God bless you!” after me. Last time, the cashier pulled her ID card out from beneath her sweater and she had a little breast cancer sticker on it. My heart sank. She yelled, “Beat it!!” super loud as we walked out and I hope a few random bystanders thought she was telling me to get the f out but probably not.

The night before I usually can’t sleep. So it ends up being a pretty long day. One of the worst parts is that I have to avoid Monty afterwards because I get so tired and cranky by the end. Last time my infusion didn’t start until 5 pm so we ended up changing my caps until 1 am. Today might be sort of similar. Hopefully a little less extreme. I hide at Floris’s house.

Monty’s dad had to go to Japan for work of course so his preschool teacher from last year is going to take care of him overnight. It is his first overnight with a non-family member! I am so grateful for the support from his preschool teachers. Can’t imagine life without that preschool! But of course I am still nervous about that combined with everything else. He will have a blast – I will try not to worry.

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My mom came from New York to help me last week which was also awesome and we went to her first Zumba class together. There’s this one move where you flip your hair around over and over again. I felt so happy to be there with my little dancer mom flipping my little spotty bald patch hair around. This makes it sound like I have lots of energy but I don’t! It was my one truly active excursion last week. It is the end and I’ve been ground down but I’m still alive and I’m psyched about that.

It really is the simple things! But to get to the simple things – it takes a lot of effort for some of us, most of us? Making it look easy is a lot of work! I am so excited that today is my last chemo. I can’t believe I made it.

 

 

 

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