More About The Cold Caps

The cold caps have been in the news recently. They are finally going to do a clinical trial to see if they work. There are a lot of people who have used the cold caps with complete success, and I am one of those people.

Are they hard to use? Well, I wouldn't say hard, but it requires commitment. It is some work to get the ice and drag the cooler around. There are chemo centers putting freezers in and I believe using the cold caps would be much easier if you didn't have to get dry ice and drag a cooler along.

Is it painful? The first one for each session is really cold. It is a bit harsh but your head gets numb pretty quickly and it really doesn't hurt when its numb. They also gave me ativan (like valium) when I did my chemo so I didn't feel too much.

There are a lot of places you can learn more about the caps. I got a lot of great information from breast cancer . org. Here is the area where they talk about the cold caps:
http://community.breastcancer.org/forum/6/topic/735873?page=302#post_3637075

Here is the Punguin Cold Cap website:
http://penguincoldcaps.com/

They have information from a lot of studies on their site. These caps have been used in Europe for many years and have been studied extensively there. The scalp cooling therapy to save hair is considered a normal part of treatment in many countries.

Here is a link to an ABC news story where they are talking about doing a clinical trial with the caps. This is a different brand than I used. I used the brand Penguin Cold Caps.
http://abclocal.go.com/wtvd/story?section=news/health&id=9182016


I really hope the use of these caps becomes more widespread. I used them in 2009 and I was told I was the first woman in the NY metropolitan area to use them. It was so helpful to me. I was able to go about my normal life and not look like a cancer patient. I certainly felt like one at times, but I did not LOOK like one.

It really helped me to have control over something during that time. Chemotherapy is hard. Having everything feel like it is spiraling out of control is hard. If you can maintain control over something I think it really helps.

I have pictures of the Penguin Cold Cap use on this blog. They start with the chemotherapy on 12/7/2009.

If you are reading this because you were recently told you need chemotherapy, I wish you strength in your fight. Feel free to contact me if you have questions.

                       This is a picture of me wearing a Penguin Cold Cap during my chemotherapy.

Good Morning America

The Penguin Cold Caps are going to be featured on Good Morning America on Tuesday October 26th. They are finally getting some national exposure and I am thrilled about that. I can't say enough good things about them or about their inventor Frank Fronda.

People say, "what's the big deal, it is just hair." But, the reality is that is is so much more than that. To look in the mirror and not see a cancer patient looking back is huge. I think it saved my sanity as well as my hair. Going through the chemo was extremely difficult. Winning the battle with the hair gave me a big victory and it helped me remain somewhat normal.

I have to thank all my Penguin Cold Cap helpers. It was a long day each time for all of us. Thanks to Cathy, Vanna and Rosanne for coming with me and doing such a great job. And, a special thanks to my cousin Nancy for making it possible for me to use them and to everyone who donated to help me! Julianna loves to brush my hair and every time she does I am so thankful.

I had my stitches out on Thursday. Dr. Keller told me I did not do well in the recovery room. My oxygen saturation was under 80 and my respiratory rate kept dropping to 6. They had given me pain medication because I was in a great deal of pain when I was waking up and that really depressed my respiration. I also had a lot of trouble with the itching when I came out of the anesthesia and they had to give me all kinds of things to try to stop that. They also gave me a lot of medication for nausea and vomiting. He said that each surgery has been causing more anesthesia side effects. I told him I think my body is just tired. They wanted to keep me overnight. My friend Lori came with me and she told me to try to get up if I didn't want to stay. I sat up like a giant bobblehead so I could get out of there. They finally let me go. It was a tough night. But, I was able to get back to work two days later. I also walked the Making Strides Breast Cancer walk 5 days after that. I thought it was 3 miles but it turned out to be 5 and I was able to do it.

I have my herceptin today. Three weeks ago when I had it they drew blood to test my estradiol and follicle stimulating hormone (FSH) to see if my chemo induced menopause will be permanent. I will find out the results today. I am trying to decide if I should have my ovaries removed to reduce the risk of them becoming a problem and this test will help me decide. There is a link between breast and ovarian cancer. I don't want to find my self a few years down the road finding out I have that.

Julianna and I added to our family yesterday. She got an orange and white goldfish she named Nemo. We went to a street fair where they had a game to throw ping pong balls its tiny fish bowls. She threw them in and missed each one. Yippie! Then the woman said "everybody wins!" and hands her a goldfish in a bag. She then sold me a cheesy fish tank for $10. So the fish is worth about 19 cents and it cost $5 to play the game and $10 for the tiny tank. The big winners are the people running the game.

I did vow that nothing else that poops was coming into this house, but she loves it. She had to have it sit on her highchair tray while she ate dinner. Then she wanted to feed it mashed potatoes and I had to explain why that was a very bad idea. She wanted it to sleep in her crib with her, also a bad idea. I am hoping it stays alive so I don't have to bring a dead fish to the pet store looking for an exact match.

Thanks for all the love and support!!!