Tuesday, December 1, 2009

Penguin Caps - Hopefully Keeping My Hair

Christmas tree and lights are up. Yankee Candles smelling like mistletoe are burning and I am ready for the holidays. Chloe too. She loves sleeping under the tree. (and chewing on the branches)

Well, it's been a nice few weeks away from the hospital. It's also been a while since I had chemo. I love this every three weeks schedule. While I've been out of the hospital I have felt much better, but there's always been some issue every day. I kept having the sweats bad every night for a while. I also was loosing so much weight I was at risk of wasting away. Even my skinny jeans that I almost gave away because I never thought I would fit in them again, were big on me. I spoke to doctors about it and they basically explained to me that my body is running a marathon. The cancer is making my body work so hard, plus I have the fevers at night and sweat for 8 hours that my metabolism is going crazy. Luckily though, the sweats have slowed down. Last night I barely sweat. My weight has remained steady which is very relieving when before I was loosing at least 2 pounds a day.

I've once in a while had bad liver pain. A couple days ago I was having bad bone pain where I have tumors. Kevin and I keep telling ourselves the pain is because the chemo is fighting the tumors. I do still have fluid in my lungs. The doctor said another 2 liters, but was comfortable waiting to see if it gets any worse since I'm not in major pain and can breathe good enough. The chemo causes this fluid to build up and I guess until the chemo gets removed from your body the fluid will keep being there. I guess they just keep tapping people until the fluid stops building up. I'd like to just deal with it and wait for it to go away. I would really rather not be tapped. I'll let you know what we see.

So, what I wanted to tell you all about is the Penguin Caps I am using. These were invented by some guy in England. They are these caps with some white stuff in them, and they get frozen REALLY cold. You put them on your head 1 hour before chemo, all during chemo and 3 hours after. You keep your hair follicles frozen and it prevents the chemo from getting to them and causing your hair to fall out. A lady bought them and used them at Beaumont right around when I was first diagnosed in 2005. They worked and Dr. Margolis became a believer and got a freezer for Beaumont. They did a clinical trial and saw they were effective a lot, so now they let you use them. You have to pay for them, but if I keep my hair it's worth it.

Okay, I do not sit in the chemo chair with a penguin on my head. My dad thought it would be cute to put this stuffed animal of my sister's on my head via his photoshop skills.
You have to switch out the first three caps every 20 minutes and then the rest are every 30 minutes. When you first put them on it hurts because it's so cold. Luckily, I've always liked ice and cold things on my head. By the end I am freezing and I'm bundled up in blankets. I go through 13 caps and I'm there all day. The one thing that does suck, is when I am done with chemo, I am ready to GO, but I have to stay an extra 3 hours with caps on my head.

My dad usually goes with me. I get IV Adivan with my chemo, so I'm really sleepy and I pass out every cap we do. Usually by the time I fall asleep, it's time to change the caps. You have to have someone with you to put the caps on for you. So, you have to bring someone who is willing to stay all day. The first time we did the caps we were the first people in and the last people out of Beaumont. That was when I did Gemzar and Cisplatin. At least my new Chemo, Carboplatin is a lot quicker..

I got Gemzar twice with no caps, but that only has a 20% chance of making you loose your hair. Then I added Cisplatin to the Gemzar and we did the caps. Cisplatin is one of the chemos that is like a 95% chance of loosing your hair. Carboplatin (which I use now), I think has a high chance of making you loose my hair too (I didn't look it up). So far so good. I keep tugging on my hair, but nothing comes out. I would be so excited if this works. I know two people who used them and kept their hair through chemo that usually for sure makes people's hair fall out. My doctor seems to think they are working.

Last thing, I am having a Jewelry Party this Sunday, December 13th at my house. It will be open house style from 12 noon to 5pm. I'm selling necklaces, bracelets, earrings, bookmarks, and wine glass charms. I'll have food and drinks. My prices range from $10 to $30. I accept cash and checks. Please email me if you are interested and need my address. iezzzi@hotmail.com.

Okay, that's all the updates I have. Even though I am having some issues every day, I am still so happy to not be as bad as I was in the hospital.



  1. I have your blog on a feed and love to get your updates.
    Glad you are feeling better and I think the penquin cap is genius.
    Is there a webpage to order the jewelry?
    My email is livelylibrarian@comcast.net
    Shannon in Chicago

  2. OK. I am not going to lie, the penguin on your head, made me laugh out loud. Glad you mentioned that it was Photoshoped in. I completely thought it was attached to the wrap and the inventor designed it that way. Your dad is hillarious. I know that hair loss is an important issue for you, so I am so happy that you found away to avoid it. I know this is one of your favorite times of year, so I hope you have a great holiday and are able to feel healthy and strong through it all.

  3. You write and seem like such a strong person. Even in fighting this terrible disease, you still look and write like you are so happy and healthy. What an inspiration to those around you.

  4. I have certainly been down about it it….and I am currently sweeping my clean white tiles of my long hair…but, what can you do? Lots of people have it worse…so if you have fibromyalgia…know that all of your symptoms are real…but they come and go…lots of remissions on all of the associated disorders…and you just have to try to take it day to day and focus on what’s good in your life.


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