Penguin Cold Caps Success Story

Since I have used Penguin Cold Caps I have been in contact with many other wonderful women that have used them too.  In my communications a fellow cold cap user has agreed to let me share her story and photos on my blog so that people can see that other women have had success with them too.  Here is Laura's story in her own words.

When I heard the word chemo, I don’t think I heard another word the oncologist said. I did not want chemo. All I knew about chemo was that it makes you sick and even worse, you lose your hair.  The thought of losing my hair was devastating. I would not look like me. I would look like a sick person.  I felt I would lose my privacy. My health should be something that is my choice to tell.  Once you lose your hair, that choice is gone. I did not want the sad looks and questions. I felt despair.

My daughter sent me a link to a website that she just happened to come across. It turned out to be the Penguin Cold Cap website. Neither of us had heard of cold cap therapy, but we couldn’t wait to find out about it. I immediately got on their website and inquired about cold caps. I was so excited to hear back from Frank (the inventor) that very day. Could I really keep my hair?  I couldn’t believe it!

I have completed my chemo treatments and have kept all of my hair. Seeing myself throughout chemo looking like my old self helped me get through it with a positive attitude; look good, feel good!  The people I work with told me they couldn’t believe I was going through chemo, I looked so healthy.

I read that 10% of women will not undergo chemo because they don’t want to lose their hair. Most women say losing their hair was the most difficult side effect they faced, far more difficult than they had imagined. I am so happy I found out about the cold caps. When I look at myself and see my hair, I still can’t believe it!

Laura

Here is Laura before chemo

Laura wearing a Penguin Cold Cap on chemo day:

Here is Laura three weeks after her final chemo:

Studies on Penguin Cold Caps

When I was deciding on whether I should use Penguin Cold Caps or not to keep my hair through chemotherapy, I reviewed as much information that I could find.   I needed to understand things clinically and make sure I was making a good choice.  I first started with the Penguin Cold Cap website for studies and general information.  http://www.msc-worldwide.com/scalpmets.html

I also read about the Rapunzel Project which is a great organization that donates freezers to infusion centers so that patients have an easier time using cold caps.  http://rapunzelproject.org/News.aspx

I also read various studies.  Here are some links to the clinical studies I reviewed online regarding use of scalp cooling and cold caps:


http://www.ncbi.nlm.nih.gov/pubmed/21431870

http://www.ncbi.nlm.nih.gov/pubmed/19241158

http://annonc.oxfordjournals.org/content/16/3/352.full

http://www.ncbi.nlm.nih.gov/pubmed/10762750

http://annonc.oxfordjournals.org/content/17/2/350.1.full

http://articles.sfgate.com/2011-01-26/news/27049661_1_cancer-patients-hair-loss-hair-roots

http://cancerres.aacrjournals.org/cgi/content/abstract/69/24_MeetingAbstracts/5040


Again there are many misconceptions about scalp cooling and cold caps.  Most physicians are not educated well about them and don't take the time to even explore the technology.  While I realize their main goal is to treat cancer and not hair issues, hair loss is a very real side effect to chemotherapy.  A patients overall well being, emotional attitude and physical well being should all be considered.  I do believe that if you feel better about yourself while you are going through the worst experience of your life it directly effects your attitude and how you feel physically.  I hope as time goes on more medical oncologists will realize this and have more compassion for cancer patients that lose their hair.  Based on how clinicians act now, we have a long road ahead to change the way they think.

My Hair Eight Months Post Chemotherapy

I know I have not posted a hair photo in a while so here you go.  As I mentioned in my blog a while ago, I finally broke down and got my long hair cut back in November.  It looked good except for because it was so long the ends looked very thin and very dry from the chemo.  I went to an all organic hair salon and consulted with a hair stylist there and asked her for help in doing something with my hair.  She was so kind and patient and gave me her best advice and best haircut. I trusted her and she did me right!  Here is what my hair looked like when I got it cut back in November:

You can see the bangs there which is the regrowth from the hair I lost at my hairline.  My hair stylist cut a few more bangs to blend them in.

Here is what my hair looks like now:

I have been using Naturtint Hair Color (available at Whole Foods or online at Amazon) which has less chemicals in it.  The color I am using is Light Chestnut Brown.  I have used it now a few times and it covers well and has not been harsh on my hair.  After completing chemo, I did not use permanent hair colors.  I started out using a wash out type hair color.  I used Clairol's Beautiful Collection.  I purchased it at Sally's Beauty Supply.  It was OK but did not cover well but it had no ammonia or peroxide and my hair was so fragile I made it work.  I was glad to have some color at that point as my roots were a few inches long from how much my hair grew during chemo.  The color does wash out after 6-8 washes and it will stain towels (so use old towels).  It worked for me at that time but I am much happier now that I am using the Naturtint which is permanent.

Tips For Using Penguin Cold Caps

As I mentioned I wanted to share more about my experience using Penguin Cold Caps to keep my hair through chemotherapy.  I in no way work for the company or anything, I am just a patient that used them and had success.  I want to help other women that may be considering using the cold caps to keep their hair through chemo.  Here are a few tips.

Supplies For Chemo Days:

• Extra thick moleskin (I used this on my forehead and at my temples while wearing the caps to keep the cold off my skin).  I pre-cut the right sizes I would need the night before and just put them in a baggy.  That way they were ready to go when I got to the infusion center.
• Panty liners - (yes, I said panty liners!)  I cut these to the shape of my ears and stuck them on my ears while wearing the caps so my ears would not freeze.
• Hair pick - I made sure to lightly comb through my hair and change my hair part every time a changed my cold caps.  This prevented me from getting any frostbite along my part line.
• Hair rubber band - I had long hair and I loosely put the rubber band in to keep the hair out of the way so it would not get stuck in the velcro on the caps.
• Ativan (I asked my medical oncologist for a prescription) - this helped keep me calm and helped me tolerate the cold while wearing the caps
• Extra Strength Tylenol - I was afraid I would get a headache from the cold so I took some before my first cap (I did not get any headaches)
• Electric Blanket - I purchased a twin size one from Amazon.  I wrapped it around me all day and it kept me warm!
• Socks, knit gloves and sandwich baggies - I decided to ice my fingers and toes during taxotere to avoid neuropathy.  I filled the baggies with ice (four) and put two on the floor.  I put my foot on them and then folded half of the baggy up over my toes to keep my nails and toes cold.  For hands, I put on my knit cloves and grabbed a baggy full of ice in each hand.  I pushed my fingers down into the ice and then had my husband pull a sock over my hands/forearms.  This way I did not have to hold the bags the whole time.  They would stay in place from the socks. 
• Scissors (in case I needed to cut more supplies)

Supplies To Have At Home:

• Hair pick or wide tooth comb - no use of hairbrushes while going through this.
• Organic Shampoo/Conditioner - I wanted to avoid parabens, sulfates and as many chemicals as possible.  I used Burt's Bees and Organix brand products through chemo. 
• Colormark - I used this to cover my roots.  It is applied like a mascara and washes out when you wash your hair.  I bought it at Ulta.  It is not the best but it does help cover roots.  At the beginning it worked fine but as the roots got super long it was harder to cover them!
• Soft Covered Elastic Hair Rubber bands - the Penguin Cold Cap website does not recommend using hair rubber bands but I did.  I exercised daily and had long hair.  I was very gentle with my hair when I used them and made sure not to put them in tight or pull on my hair when removing them.
• Thin, soft elastic headbands - I used these to just keep the hair out of my eyes.  I got them at Walmart in a six pack cheap.
• Deodorant - PCCs recommends you use organic, chemical free and aluminum free deodorant while using cold caps.  I used Bumble and Bee (I ordered this online) and also Nature's Gate deodorant (I got this at Meijer's).
• Organic or Chemical Free/Aluminum Free Mascara - I figured if PCC's tells you to avoid chemicals in the hair under your arms, why not for your lashes?  I used Physician's Formula Organicwear Mascara for a while.  It was OK bur ran horribly if you got it wet.  It was easy to get off though without using much soap or any tugging on the lashes.  Later I switched to Tarte mascara (from Ulta) which is not organic but avoids aluminum and most other bad chemicals.  I managed to keep my lashes through chemo but they fell out about 7 weeks after finishing chemo.
• Latisse (I had my medical oncologist give me a prescription).  My lashes stayed through chemo but fell out later.  I started using it regularly after finishing chemo.  My lashes grew back so fast and were super thick and long.  It is expensive and not covered by insurance but I believe there are generic and over the counter options available too.  I also used it on my eyebrows which thinned but never fell out (yea!).
• Organic and Chemical Free Hair Styling Products - PCC's probably does not recommend use of these items but for special occasions when I needed to look better I did try some Giovanni and Organix hair styling products to get the frizz under control.  I did also use Aveda's Be Curly to wear my hair wavy/curly on humid day.
• Cute, Lightweight Hat - I know PCC's does not recommend use of hats during chemo but I did use hats on the really bad hair days.  I experienced no ill effects from it and it made me feel better about how I looked. 
• Thick Cotton Headbands - again PCC's probably does not recommend the use of them, but I did wear them to help cover roots as my hair started growing out towards the end of chemo (my roots were at least 1 1/2 inches long as my hair continued to grow at a normal pace through chemo!).
• Satin Pillow Case - I did use this since I had long hair to help prevent pulling on my hair while I was sleeping. 
• Hair Extensions - I had some clip in real human hair extensions I got at a local beauty supply store.  I know PCC's probably does not recommend the use of these, but I did use them towards the end of chemo and after chemo when my long hair looked thinner at the ends. 
• Handheld Shower Sprayer - I got one that attached to the tub faucet and that had a sprayer on it.  I found it helpful to wash my hair since it was so long.  It allowed me to get the cold water right at the roots of my hair easier than using a cup and pouring water over my head.  I washed my hair leaned over the tub once a week with cold water as recommended.

Hear is what I looked like with moleskin and panty liners on before putting my first cold cap on:  (this is definately not me in one of my finer moments in life...)

Once I got my moleskin and panty liners on, I took that ponytail out and put a very loose, low ponytail in to keep my hair out of the velcro on the caps.

Here I am with my first Penguin Cold Cap on:

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.

A Normal "Hair" Day

I have to say how glad I am that I did the Penguin Cold Caps to preserve my hair during chemo.  It has been a long road for sure, but I am pleased to have enough hair to look normal to others.  There is something to be said for not walking in a room and feeling like everyone knows you had cancer.  Just like my blog says, "Breast Cancer Won't Define Me", and for me it's true!  Having hair just makes it easier at times. 

Last night I got a call to substitute an aerobics class this morning.  This would be the first class I have taught since we moved out of state.  I have been dying to teach so I was ready to do it this morning.  I went in there and taught that class just like I always have.  I was a little weak on the upper body given my surgeries, but overall it was a good class.  The people were nice and appreciative to have a good class since their regular instructor could not make it today. 

After I left, I started thinking what it would have felt like to teach that class if I had not used cold caps.  At this point, my new hair growing in is about 1-1 1/2 inches long. If I had not used cold caps, it would still be pretty obvious that I had lost my hair.  It felt so good to walk in there just like everyone else and feel "normal".  I know the alternative would have been a room full of people staring and wondering for the entire class about what type of cancer I had.  It's like walking in and saying "Hi, my name is Maria and I had breast cancer.  So, let's get started with class!". 

For me, using cold caps was a blessing.  It is allowing me to move on step by step beyond breast cancer.  When I go out or meet new people, no one knows my personal business.  It allows me to share my situation with those that I choose to tell.   It felt so good to get back to a "normal" activity and a normal day.

After that, my day got even more "normal" as I had to go to the Secretary of State and get a new drivers license.  Well that is always a treat, but this time I was super happy to see the photo on my new license.  It was me, with hair.  Since I have to keep that photo for the next four years, it was nice to look like the pre breast cancer me again.  I was so happy, I didn't even mind waiting in line!

My journey through chemo with hair

My worst fear when I got diagnosed with breast cancer was losing my long hair.  I know that seems odd, but for some reason it was important to me not to lose my hair.  I think it was because I knew that if I was bald people would immediately know I had cancer.  I just couldn't face broadcasting my health condition to the world and especially my four year old son.  I kept hoping and hoping that I wouldn't have to get chemo and it would not matter, but the more I read about my situation and talked to the doctors I thought "how can I NOT do chemo". 

I then did research and came across a thread on the http://www.breastcancer.org/ website about using Penguin Cold Caps to keep your hair during chemo.  I started reading as much as I could about the cold caps and talked to my medical oncologist.  She supported my use of them but warned me that there was only a 50% success rate.  I had talked to the Penguin Cold Cap representative and knew that was misinformation and was not accurate.  In fact, the cold caps have a very good success rate especially with the chemo I was on (taxotere and cytoxan).  I decided to do the Penguin Cold Caps. 

I have talked about this for months on my blog, but now I wanted to share my journey with my hair.  I hope this helps other women out there facing chemo.  I hope people realize they have a choice in keeping their hair....I am proof.  See for yourself that it worked for me.

Here are some photos of me before chemo.  My hair is long, colored and about medium thickness. 

August 2010 - 4 months before diagnosis

October 2010 - 2 months before diagnosis



October 2010 - 2 months before diagnosis



March 2011 - right before starting chemo




46 days after first chemo
(air dried, frizzy hair - no blow drying allowed)



April 23rd 2011 (a week after 3rd chemo)

 

April 24th 2011 - 1 week after 3rd chemo



April 24th - 1 week after 3rd chemo



Weekend after finishing last chemo
(I have one small set of hair extensions in today)



August 2011 - 3 months after completing chemo
(hair is air dried and a bit frizzy...still not able to use blow dryer)

Is my hair the same as before chemo?  No.  It is definitely much thinner.  It does not help that I can't style it much.  I have gotten use to air drying my hair which now happens faster since it is thinner (I am looking for the positives in this).  I am still only washing my hair twice a week but it has adjusted and quite honestly doesn't even get greasy anymore.  I guess it somehow got use to not getting washed and adjusted which is a bonus!  My hair still sheds more than it did before chemo but I still have a full head of hair.  Now I tend to wear one small set of hair extensions that easily clip in/out and with those in, it pretty much looks like my pre-chemo hair.  Today I actually used a cooler flat iron on the length of my hair and styled it slightly like I use to wear it (straight) and I could not believe it - I looked like the old me!  It is the first time in months that I looked like myself.  It made me feel really good. 

I hope that if you are considering using Penguin Cold Caps you can get an idea of what the results may be.  I am glad I did it.  I feel good having my hair and feel like it is easier for me to move on with my life.  I am sick of the shedding but when I go out, no one knows I had cancer.  There are people that have not gone through chemo that have less hair than I do.  I am thankful for Penguin Cold Caps!

Here I am!

It has taken me a long time to feel comfortable to reveal myself on my blog.  For a long time I felt ashamed of my cancer.  I guess in time you get use to it (it's not like I really had a choice.....it will always be a part of my life in some way).   Now I am to the point where I don't care if people know about my cancer, so here I am!

My name is Maria and this is my husband Joe and my son Jayden.  These photos were taken two months before my diagnosis on a wonderful family vacation to Disney and the Bahamas.

This photo was taken two days before my diagnosis as we searched for the perfect Christmas tree.  It's hard to look at these photos because back then I had no idea in two days my life would forever change.  These photos represent the care-free life I will no longer know.  I mourn having a care free feeling every morning when I wake up. 

Here I am now.  These photos were taken a few weeks ago on my celebratory trip with family and friends down to the Outer Banks in North Carolina.  This trip was meaningful because so many good friends and my sister were there to celebrate me completing treatment and being cancer free. 

I guess when I look at the photos, I see the same person, but so many things have changed both physically and emotionally.  In some ways I wish I could go back to my pre-cancer life, but there are some things that are better since getting breast cancer.  I guess I am going to try to focus on the blessings that have come out of this journey.  The good things are having the chance to find out how much my friends and family really care about me and what I mean to them.  Having cancer brought about many wonderful discussions with people in my life where they expressed things they may have never said to me if I had not gotten sick.  I have also come to appreciate saying good bye to corporate America and spending more time being a mom and wife.  I am adjusting to staying home, but it is so nice to be with my son so much more now that I don't have a demanding fulltime job.  I have made so many wonderful, new friends in my breast cancer journey.  I have a group of gals I chat with online everyday.  We are "Bosom Buddies" because we have all gone through breast cancer together.  Though we have never met, we are forever joined together in a special way.  I could not have gone through this journey without my "Bosom Buddies".  The last thing I have come to appreciate is that breast cancer brought my husband, son and I closer.  Now that we have moved away from family and friends, it is just the three of us.  We are spending much more time together alone which has been amazing.  I hope in time I will continue to find more blessings in this horrible disease.  I am trying to focus on the positives as much as I can despite cancer being such a negative thing.

So for those of you that have been reading my blog and wondering who I was, now you know.  You can put a face with the story you have read and see that life does go on after getting diagnosed with breast cancer.

Hair, hair, hair...it's still all about the hair!

This past week my hair has been shedding so bad!  I knew with Penguin Cold Caps I would have shedding and lose some hair but I was not emotionally prepared for it to continue like this even over five weeks after finishing chemo.  This past week I have had worse shedding than the entire time during chemo!   Enough already!!!

I know that as I see every single hair fall I panic.  I know that it's crazy when you feel a bunch of hairs that have fallen out just dangling from the bottom of you hair and you grab them and it's a handful it's stressful.  I was not prepared to actually count that handful of hair and realize there were 65 of them!  I have never stopped to count the hairs that fell or save them in a bag to compare how much I lost each week...I simply just scoop them up and throw them away or simply use the Cone vacuum and suck them up.  This time because so many came out I felt compelled to count them...yep, there were 65.  I had not even combed my hair so lord knows how many more would come out after that!

It was so alarming this week that I did not comb my hair for 3 days....who does that?  I wore a hat and clipped my hair back loosely for 3 days.  Yesterday it was time to wash it and I was petrified!  I had a dream the night before that all of my hair starting falling out in clumps.  I was tempted to take xanax before washing my hair to help me cope.   Who does that? 

So I sucked it up after procrastinating and cleaning the kitchen and finally got the nerve up to wash my hair.  I did not take the xanax.....I talked myself out of that.  No one should require xanax to wash there hair (I keep picturing reading the bottle and having it say "take one pill 30 minutes prior to washing hair"....). 

When I combed it before washing, a lot came out as expected.  When I washed, I lost some but not as bad as I imagined given how much it was falling out all week.  I let it air dry mostly and when I looked in the mirror after, I still had what looks like a full head of hair.  It's not styled so pretty, but it is in fact a full head of hair regardless of every single hair that continues to fall out daily.

The rest of the day I continued to pick hairs off my shirt...yes, it shed like crazy all day again.  Hopefully it will stop or at least slow soon.  On a positive note, my hair has grown about two inches since starting chemo (my roots are the proof) and I actually had to tweeze some stray eyebrow hairs this week (I have not done that since starting chemo in March!!!!).  So I guess hair is starting to grow again a little.  That's great news since I am sick of playing connect the dots with my eyebrows.....

Hair is falling

I finished chemo almost 5 weeks ago which I still can't believe.  I just kind of thought that after chemo my hair would stop shedding so much.  I did do cold caps to save my hair and they worked - I do have a full head of hair still (which is great!), but I am still shedding.  I feel like now that chemo is over the shedding has been greater.  Maybe it is just a phase...let's hope so! 

I have long hair down to the middle of my back and during the past several days I keep feeling hair tickling my arms...it is more hair just trying to fall out that is hanging down from my hair.  I am so sick of finding these and removing them all day long!  Ugh!  When will the shedding stop???  I hope soon.

I am so glad I did the cold caps to keep my hair.  It has made a huge difference to me and was worth the effort.  I still look like me with long, brown hair.  I guess the only difference is the very long roots (oh how I would love to get my hair colored!!!) and a bit thinner.  The good news is that I am the only one that notices the hair being thinner.  My best friend visited this weekend and she stared at my hair all Friday night and said "it's amazing that you were able to keep your hair and I have been studying it all night and I can't tell that you lost any".  That made my week....she is very honest and would tell me the truth. 

At this point, I will wait to color my hair even with the gentle no peroxide and no ammonia hair color kit.  I just want it to hang on more and have the shedding much less before I do anything that could be damaging to my hair.  I have never had roots so bad in my life......it's not pretty hair, but it's my hair.

It's all about the hair now

Now that chemo is done and my body won't have to get any more of it, it's all about the hair!  I still have a full head of hair, but I still have to be so gentle with it and hardly wash it or style it.  Ugh!   Don't get me wrong - I am grateful to have hair after chemo.  It's just hard to see it continue to shed, not be able to style it the way I want or just wash it more than once a week.  But then again, a bad hair day is still better than a no hair day.....

At this point the hair is hanging on.  It has thinned a bit, but I don't think anyone else can really tell.  I have lost some around the hair line and side burn area, but again I can only notice that.  My ponytail is a bit thinner, but that's OK.  I just started using some hair extensions to thicken it up a bit and it looks so much better even with only one small hair extension.  It just makes me feel better when I wear them though no one else can really tell my hair thinned.

So based on all this, I can honestly say Penguin Cold Caps really work.  It's amazing to think that I went though chemo and ended with hair.  One of my biggest fears was losing my hair.  I just didn't want my son to see me that way or remember me that way.  The thought of that broke my heart.  I can't believe I did it - chemo and kept my hair. 

I will continue to be gentle and kind to my hair in the coming weeks and hope the shedding stops soon.  I long for the day when I can color my hair and just wash it without a care.  That seems like it will be so far away..... For now, I am so grateful to have hair.  I can just close the door on chemo and move on.  That feels good.

Chillin' with my hair

This past weekend I was completely lazy and it felt good!  I don't workout on the weekends.  I try to rest since I hit the gym Monday through Friday.  I can tell you that not working out does make me more tired and way more lazy.  I really did nothing to speak of this weekend.

The most activity I got this weekend was washing my hair...yes, washing my hair.  You know if you have been reading my blog that washing the hair is a very big deal for me since I am fighting hard to keep my hair every day while going through chemo using the Penguin Cold Caps.  So the update is it is now 47 days since I started chemo and I still have a full head of hair.  It is not particularly pretty looking since I can't style it like I normally would, but it is hair and I will take that!  Most people on my chemo lose all hair by day 18 after starting chemo so I know I am very lucky that I read about Penguin Cold Caps!

On Saturday morning I did wash my hair and of course I freak out every time thinking it is all going to fall out.  I did lose some hair, but it was less than I have in the past few washes.  It seems like the shedding has still diminished a little which is nice.  It's funny because I was so worried about losing hair during chemo I did not think about my hair growing during chemo.   I need to "get in touch with my roots" as my darker hair color and gray is coming in!  Yikes!  I am shocked to see that I have about 3/4" of NEW growth since I last dyed my hair (which was in February!).   I am so excited that I not only have my hair, but it continues to grow during chemo!  That's a good feeling given the alternative of being bald.

Why is washing the hair so traumatic?

I use to wash my hair every day.  I would wash, blow dry and sometimes use a curling iron or hair straightener and never gave it a second thought.  When I think about all the styling products - gels, mousse, hairspray and more that I would use....I never paid attention to what was in it or if it was harmful.  Now everything is different.

Since I am doing the Penguin  Cold Caps to keep my hair through chemotherapy the whole hair game is different.  Now washing my hair is completely stressful and emotional.  Yes, you read that right...stressful and emotional.  I said to my husband earlier today "I have to go upstairs and wash my hair and freak out and cry for a while so I have to allow time for all the drama so I will see you in a few hours".  Yes, you read that right too - I really said that to my husband.  This is my new normal, unfortunately. 

So here I sit with a towel on my wet hair waiting for it to dry a little since the hair dryer is now evil.  I hate washing my hair now.  It is torture seeing ever strand fall when I wet, wash, condition, rinse and comb it.  Ugh!  I swear it is going to make me nuts by the end of chemo.... 

The funny thing is that my hair pretty much looks normal to everyone else.  No one really knows (except me) what comes out when I wash it.  So if I stress about my hair, no one understands.  I have never spent so much time and energy on my hair!  It's exhausting!

I guess the good news is that I am almost 6 weeks out after my first chemo and still have a full head of hair.  Normally hair falls out almost completely within 21 days of starting the chemo regimen I am on.  The people at Penguin Cold Caps told me "if you still have hair at day 21 it will work for you."   I guess I am lucky about that despite the stress of all of this. 

I am definitely still shedding more than I did before starting chemo.  I soooo wish that would slow down more but that will take time I am sure.  For now I barely wash it.  There is minimal styling since you have to be so gentle with your hair.  I am lucky I have long hair so I can gently pull it back in a loose ponytail.  I do miss styling it my normal way, but I am so dang happy I have hair, I will take it!

Still obsessing about the hair..yes, the hair

I am now 10 days past my second chemo and 4 1/2 weeks after my first chemo and still have a full head of hair thanks to the Penguin Cold Caps.  I won't say this week went by without stress over the hair, but overall it went well.  As I was told there will be shedding periods with the cold caps, but you will keep most of your hair.  They are right!

The shedding was definitely the worst last weekend.  I was so freaked out (read my previous posts!!!).   I have never cried over my hair before!  I can say calmly today that the shedding has continued to decrease each day.  That gives me hope that I can do this and keep my hair. 

This week I was to afraid to wash my hair and it is recommended to only wash once or twice a week during chemo if using cold caps.  I was so scared to wash but my hair got so gross.  I realized yesterday when I went to the gym that I was actually embarrassed to go with my hair looking like that.  I guess since most people go to the gym with gross hair, if you are embarrassed to go there because of your hair, it is time to wash the hair!  So I fretted all morning and most of the day and by 3pm I bit the bullet and washed my hair. 

With the cold cap protocol you wash your hair in cold/cool water so it's never relaxing....so I began and it was not that bad on the shedding.  I did lose some hair...more than I would lose before starting chemo, but when I got done, I still had a full head of hair.  I keep reminding myself that each time I look in the mirror. 

I realized this morning that it IS working well for me.  I went to my son's swim lesson (I never go because I am always teaching aerobics classes on Saturday mornings) and felt like every other mom in there.  No one would ever know I have breast cancer or that I am going through chemo.  My husband introduced me to another dad that brings his son to the same class and it was nice to feel "normal".  He knew I taught aerobics on Saturday mornings and can't usually come to class (apparently my hubby told him),  I simply said I was off teaching due to an injury right now.  That was way better than saying "I have breast cancer" and getting "the look".

So despite being worried over losing hair a bit, it IS working.  The Penguin Cold Caps are worth the effort.  I plan on ending chemo with my hair and dignity!

Hair is hanging on...still

I am still obsessing about my hair.  I can't help it!  So I am now 26 days after my first chemo treatment and 5 days after my second chemo treatment and still have hair!  I won't say it has been without obsessing and effort, but there is hair!  I believe the Penguin Cold Caps are going to work for me!

The hair has still been shedding a little but I do believe it is slowing down since my worst day which was Saturday.  Today I combed lightly using a wide tooth comb and being very gentle.  I had hair come out - more than normal which has me stressed, but when I look in the mirror there is still a full head of hair.  That is what I WILL focus on. 

Right now I have been focusing on the hair that falls out...there is still way more hair on the head than there is in my comb or on the floor.  For now people see me like everyone else - with hair.  No one has noticed my hair being any different...other than not styled my normal way, but that's nothing to me. 

Tonight I covered up my roots with colormark to make me feel better.  It looks better that way....I feel a little more like me.  I wore a cute hat today to cover up the flat/unstyled hair I am sporting and I looked cute in the hate.  One of the hardest things is finding a new normal in all of this.  For me the new normal will be a little less hair with no style, but it IS hair which is my goal.  I am going to try to remember that each day I get up as those around me also going through chemo don't have hair.  A BAD hair day is a GOOD hair day to someone going through chemo......

On a bright note...still no chemo side effects!  If I make it through tomorrow with no bone pain I am home free!

Ugh....the hair!

So I finally got up the nerve to wash my hair today.  I have followed the directions and have not washed since last Saturday.  Since some of the shedding started on Wednesday when I had my second chemo, I was petrified to see what would happen when I washed my hair (since it has still been shedding since Wednesday).

I started to gently comb my hair from the bottom and hold the top so I would not pull on it.  I figured that if I combed it a little before it would be less tangled during washing.  The combing went fine and not much hair came out - maybe a little more than normal but not bad.  Then I began to wet my hair with the cool water and started seeing hairs drop.  I continued along slowly and carefully bent over the very large and oh so very white tub (making every hair stand out like a sore thumb) and watched each hair fall....many hairs fall.  I washed and conditioned a little and rinsed...more hair.  It has been horrible all morning.  I just looked in the mirror and tears began to fall. 

I know the "shedding" is normal with doing the cold caps, but I kept having hope maybe it would not happen at all since it has been over 3 weeks since my first chemo and there had been no hair loss.  Ugh.  I just sat there with wet hair....letting it hang and dry.  I was too afraid to touch it.  It doesn't look any different to me (other than not dried and styled like I would).  I did not notice any bald spots or clumps coming out which is good news, but I can't get the image of all that hair coming out today in the tub!  This is the first time I really feel a strong panicked feeling about my hair since starting this process.  I have been positive and have said over and over again that it will work and I will keep my hair.  I am starting to just get a bit nervous now.

Others that have done the cold caps have experienced the same exact shedding and worries and still went through chemo and finished with hair.  I have to try to hold on to that and their words of wisdom and experience that this will be OK.  I guess I have just tried to be so positive and have not let a negative thought enter my mind in the past few weeks since starting chemo it is just hitting me today.  I hate breast cancer. 

I have to find a way to put this into some kind of perspective.  Normally I would wash my hair daily.   I wonder how much hair I would lose on a daily basis doing that?  I have not washed my hair in an entire week (following the protocol for Cold Caps) and had some shedding in the past few days.  I wonder if I shed more because it was all at once (a week's worth of shed without washing)?  Let's face it, I have been really gentle with my hair and have barely even combed it much in the past week.  That plus the chemo shed may make this normal for cold caps.  I sure hope so.   I just hope the shedding period stops soon.  I don't know what will happen if this continues for a few more days.  That will put me over the edge for sure!

For now it looks normal (other than not styled my normal way) and does not look thin.  I will try to remember that today.  I will tell myself that over and over again today. 

As far as post chemo this week, I am doing better than I thought.  I had chemo on Wednesday and felt fine on Thursday and Friday.  I exercised well both days too which felt good.  Yesterday in the afternoon I started feeling a little foggy in the head like last time and started with some body aches.  I have been taking Aleve and Claritin this time around to help with side effects and I do feel like the side effects are a bit less than last time which is good news.  I do have a little soreness in my neck, base of skull, ribs and jaw, but it is minimal and definitely less than last time.  I slept OK last night - not great but better than some nights.  I have been really hungry the past two days.  All I want is carbs.....lots of them too!  I have been trying to focus on drinking a lot of water to flush the chemo out of my body.  I just hope the bone pain does not hit again this time around.  We will see.

I am shedding....a little!

I know that by doing the Penguin Cold Caps it can help preserve your hair during chemo, but there is still some hair loss that can occur.  I have been waiting for the time in which my hair would start to shed a little.  I was so hopeful there would be no shedding after my first round of chemo.  I made it to the second round of chemo with no shedding, but yesterday it happened a little.

I had the first chemo on 3/2 and literally had no shedding until yesterday (3/23).  I am very gentle with my hair and barely comb it with the wide tooth comb each day to avoid any additional stress on my hair.  Up until yesterday I would only get a few hairs out of the comb (maybe 4-6).  Yesterday I combed one side and got at least 10 hairs.  I combed the other side and the same thing.  I combed the back - same thing.  Yikes!  Later in the day I still noticed more hair coming out in strands. 

I was told there would be days of shedding but everyone's reaction is different.  I thought maybe I was going to get by without it but......Oh well.  As long as it stops soon I will be OK.  I know that the hair down south shed for about 5 days at day 13 after chemo and then stopped shedding.  There is still some hair left (maybe 25%) so I am sure it will go soon now that I had chemo number two.  No one told me when I got diagnosed that I would get a free Brazilian!  I am not sure if that is a bonus or not....I think my husband may think so though.  (Like I really feel sexy right now....ha!).  I hope the shedding up top doesn't last for many days......oh God please let it stop!

At night to protect my hair I sleep in two loose braids and put my hair in a satin sleep cap and sleep on a satin pillow case just to avoid any pulling on my hair since it is longer.  Right now I am still in my braids...afraid to take them out and see the hair again!  Oh, it's going to be a long day and potentially a bad hair day at that since I have not been able to wash my hair since last Saturday!  (I have a hat for today and can wash tomorrow...but I am scared to wash now!).

I guess I have officially changed my obsession for my boobs over to a new obsession - hair!  At least with the boobs no one can really see anything - they are under my clothes.  With the hair it's just right out there for everyone to see - including me all day!  Yikes!  For now I am going to continue to have hope that my hair will stay with me.  It just hast to, right?????

Half way done with chemo with hair too!

Today was day two of my four chemo sessions on taxotere and cytoxan.  Now that I am through that I am officially half way through my chemo journey.  I am so glad. 

The day started out rough as the steroids kept me up until 2:00am last night and I was up at 6:30am this morning to get my son ready for school as usual.  By the time I got him out the door I had to quickly pack food for the day and get everything together, take a shower and take all my meds.  We were out the door for the cancer center by 8:20am this morning with all of my food and hair saving gear. 

We met with my oncologist after my blood work.  Blood work is all in a good range so we could do chemo.  After reviewing a few things with her it was time to get started.  I had to get that first Penguin Cold Cap on......lord the first one is the worst.  It is like a brain freeze from drinking a frozen margarita way too fast. The good news is that like a brain freeze it doesn't last long.  The more I did the caps it was not that bad.  The hard part is freezing the fingers, toes and keeping ice in my mouth while wearing the cold caps during the taxotere drug.  That drug can cause neuropathy in fingers and toes and soars in the mouth.   The ice helps  prevent that.  Of all of these, icing my toes is the WORST! Ugh!  Once I was done with that, the caps didn't bother me really. 

It was a long day because of the caps.  You wear them 50 minutes before chemo, during chemo (my chemo is 2 hours) and then an additional 4 hours after chemo.  I am glad that long day is done!  The good news is I  am half way through chemo and I still have a full head of hair.  I hope it stays that way.  The cold caps are worth it!!!

Hair is hanging on

I don't know if I even dare to put in writing that the hair is hanging on..perhaps I have jinxed myself.  I certainly hope not.  I had my first chemo treatment on March 2nd and am using the Penguin Cold Caps to save my hair.  I have read that with my chemo regimen that the hair loss usually starts anytime about 14 days after the first chemo treatment.  It is now 19 days after my first chemo and I am watching like a hawk to see if there are any changes in my hair.  So far, not much change.  I hope it stays that way!  I am petrified it won't. 

Around day 13 after chemo I started noticing the hair "down south" shedding.  I noticed continued shedding for several days and now about 75% of it is gone.  Once I noticed that happening I started freaking out about the hair on my head wondering when it was going to start!  I even had nightmares about my hair falling out!  Ugh!  As if getting breast cancer isn't bad enough, now this!  I am so tired of obsessing over my boobs under construction and now I have to worry about my hair too.  It's exhausting quite honestly.

I only wash my hair twice a week now (per the hair treatment protocol - not by choice) and I have to wash in cool water.  Since I won't take a cool shower I wash my hair over my large garden tub using a small hand held sprayer (bought at Walmart for $8).  The thing about my tub is that it is white...I have dark brown hair.  Now my new hobby is counting the hairs that fall out while washing, rinsing, conditioning as they go down the drain.  What a great new hobby.  Talk about being crazy.....

I was really nervous to wash my hair on Saturday as that should be during the prime time for shedding after my first chemo but I was pleasantly surprised.  I lost about 20 hairs during the washing, rinsing and conditioning part and maybe another 10 hairs when I combed my hair out (I only use a wide tooth comb to avoid pulling on hair).  Since a normal person loses about 100 hairs a day, this was not bad at all.  I just wish I could be assured it would stay like this. 

I do know that I have lost some hair though besides "down south".  Normally I have a lot of small, short, what I call "baby hairs" around my hairline on my forehead.  I never had a clean/clear hairline as I always had lots of these baby hairs.  Now they appear to be gone and I have a very clear hairline.  This would not be noticeable to anyone else, but I noticed it.  Since this part of my hair was not protected by the cold caps, it makes sense it would shed.  The fact that nothing else has shed yet is a good sign I hope. 

It's hard to believe it has been almost 3 weeks since my first chemo.  It is already time for my next round in two days.  I have less anxiety about the chemo but am just dreading the body aches and bone pain to follow in the days after.  I keep thinking about how crappy I will feel next weekend.  I guess the only thing I can stay focused on is that I will be half way done with chemo this week.  Only two more to go after that.  I just want it over with!

Waiting for my hair to fall out.....

My first chemo was 8 days ago and I got over that hump.  Quite honestly, I was more concerned about being able to tolerate the Penguin Cold Caps (to save my hair through chemo) than the chemo itself.  That too went better than I expected and I tolerated it well.  Now I sit and wait.......and wait......

With the type of chemo I am on (taxotere and cytoxan) the hair generally starts to fall out at least two weeks after chemo and later.  So for this first week I have been doing a good job distracting myself and not thinking about my hair potentially falling out.  Now that more time is going by I am starting to think about it more and more.  I hate the waiting...it's killing me!

So next week on Wednesday it will be two weeks.  I keep checking other body hair and it is all in tact (nothing like giving a slight tug on your hair down below to check and see if it's falling out or not).  I don't know how I will get through the next week without obsessing over my hair.   It is going to be one long week!

It is hard not to obsess over the whole hair thing at this point because I can't even treat it normal.  Now I can only wash it twice a week and it needs to be in cool water - not hot water like in a normal shower.  I have to time out which days I will wash it based on when I will be going out or seeing people.  In addition I have to use all new hair products that don't contain sulfates or parabens.  These products need to be really gentle.  I have chosen some organic products.  The hair dryer is out unless you use it on cool.  Do you know how long it takes to dry long hair on the cool setting of a hair dryer?  Answer:  forever!  Not only that, but when drying it, you can't really brush it as you don't want to tug on it at all.  So with all the new, strange and undesirable hair care protocols, how do I NOT obsess about my hair???? 

I have slightly wavy hair and before all of this I used straightening gel and blow dried my hair out straight using a large round brush.  I never LOVED my hair, but it looked nice.  Now I would kill to blow dry it and style it my normal way.  Now I am settling for wavy, curlier styles and using headbands and styling options I never would use before.   I know this is a small sacrifice at this point - having undesirably styled hair is better than having no hair, right?  I keep telling myself that over and over again.

The nice thing about having hair through chemo (assuming I will) is that you don't feel like you are broadcasting "I have cancer" to the world.  We went out with some friends a few weeks ago that we only see once or twice a year and they don't know anything about my cancer.  I keep thinking that if I keep my hair, it will be just like that. No one will ever know.   There is something powerful to me about that.  I don't want pity.  I want a normal life just like everyone else.  I just want to go out and live life in a normal way without everyone feeling sorry for me or looking at me with pity.  I hope that having hair will let me do that.

The other thing about having hair during chemo is that when chemo is over you can just wash your hair and go out and move on - with hair!  I think I would rather have a few months of ugly styled hair during chemo when I feel crappy anyway and then just move on after chemo.  By the time I am done with chemo I will feel good again and at that point I will not have to wait another six months for my hair to grow back.  I can just "be" and not have the daily reminder of chemo and cancer with a bald head and wigs. 

I know so many people go through cancer and lose their hair.  I commend them.  For some reason losing my hair to me was the hardest thought to deal with.  I just felt too vulnerable to go out with a wig on and let everyone everywhere see me as a "cancer patient".  Now, I am only a cancer patient when I go to the oncology office.  When I go to the gym, my son's school, out to dinner and visit with friends, I am just a regular person.  That feels good to me.  That gives me hope that I can be a normal person again.  For now, I will continue the horribly loooooong wait and see if my hair holds on.