Penguin Cold Caps

I just wanted to put some posts in here about my experience using Penguin Cold Caps to keep my hair during chemo.  I am frustrated by the lack of support by medical oncologists and the misconceptions they have about the use of cold caps to preserve hair.  There were caps that were used in the 80's with little success, but this is NOT the 80's!   That was 30 years ago for God's sake!!! I am sick of people being uneducated and misinformed about cold caps and discouraging patients from using them or considering them.  This is NOT about hair or vanity!  This is about dignity, privacy and maintaining some sense of normalcy in your life while everything else is out of control with breast cancer!!!!  I wish the medical community would understand that and help their patients deal with this devastating side effect of chemotherapy. 

I know that medical oncologists are there to treat the disease, which is cancer.  Their goal is not to worry about hair, but I strongly believe there is a mind body connection and the better you feel about yourself and your life while you are going through cancer treatment, the better you will be and the less side effects you will experience.  Using the cold caps allowed me to continue to do things I would probably NOT have done bald like going to my son's preschool for events, working out at the gym daily (that would have been comfortable with a wig on....), going out in public, meeting with work colleagues (they did not know I had cancer) and returning to teaching aerobics classes a few weeks post chemo (my class never knew I had cancer and it would have been hard to get in front of a full room of people in a wig or bald for me).

Many of us that have used Penguin Cold caps met resistance or negative comments from our doctors and especially the nurses.  It was extremely frustrating to hear "don't get your hopes up...most people don't have success with cold caps" from the chemo nurse at my medical oncology office every week despite the fact that they offered cold caps and a freezer in their office.  After my third chemo, I took great pride in being smug and showing her my hair.  It was a moment of satisfaction for me to rub it in her face.  I don't consider myself a spiteful person but it felt good to prove her wrong.

When I met with a medical oncologist at University of Michigan for genetic counseling weeks after completing chemo, she looked me in the face and told me cold caps don't work despite the fact I had all my hair.  Really?  I said "I have all my hair though!".  She said "well they only worked for you".  I can't even believe these people!  What is wrong with them???  Can't they look at me as a success?  Can't they see I am a survivor that looks healthy and feels good about herself vs. a survivor that is frail and still looks sick?

I am going to put some resources on my blog to help others out there that want to save their hair during chemo.  I am not a doctor or affiliated with Penguin Cold Caps in any way.  I am simply a patient that used them and strongly believes in their success.  I just want so serve as inspiration to someone else going through cancer treatment that wants to keep their hair.  I want to offer encouragement and hope when it feels like you are doomed.  That is what other Penguin Cold Cap users did for me on the message boards at http://www.breastcancer.org/.  There is an active thread of cold cap users there that supplied me with tons of information, support, encouragement and key learning's from their experience using Penguin Cold Caps.  If you are reading this and considering cold caps, I strong suggest you read the postings on http://www.breastcancer.org/ under the topics of Help Me Get Through Treatment.  There is a thread titled Cold Cap Users Past and Present.  There is tons of information there that was very helpful to me. 

Stay tuned for details on my experience using Penguin Cold Caps.  I am going to post photos and a step by step list of things I did through the process in hopes that it is helpful to others dealing with chemotherapy.