"Don't spend time worrying about how you are going to die. Worry about how you are going to live today"

Monday, January 30, 2012

Moving On After Treatment

Today I had a follow up with my new medical oncologist.  I have only been to him once since we moved here a few months ago.  It was kind of odd changing medical oncologists and plastic surgeons in the middle of my treatment, but since we moved I had no choice.  I kind of miss my old doctors in Michigan right about now!

What I am having a hard time with is the lack of follow up that you get after treatment.  I feel like they should be "doing something" when I go there.  Ugh!!!

The exams are only physical where they look for obvious lumps or swollen lymph nodes.  They check blood pressure and breathing.  Then they will ask if I am experiencing any issues or strange symptoms.  That is pretty much ALL they do. 

After a year of tests, blood draws, medications and multiple doctor appointments it is kind of hard for me to wrap my brain around a simple physical exam.  They don't even draw blood!  I know I have to accept that this is the norm, but it is hard.

At this point I continue to go back to the medical oncologist every three months for the same type of simple exam.  While I am grateful that I only had stage 1 breast cancer, it is hard to just "move on" after treatment.  I have talked to other early stage breast cancer patients and their exams seem similar.  I guess this is one more thing to accept along this breast cancer journey.  It is hard to not worry that there is something deep inside me sprouting and spreading through my body.  I hate breast cancer!!!

Friday, January 27, 2012

One Year Later

A year ago today I had a bilateral mastectomy.  I can clearly remember that morning.  I was a complete wreck.  My husband and I dropped off our son at pre-school and I hugged him.  I remember being in the hall outside his classroom and the tears began to fall down my cheeks.  One of the teachers whom I did not know was just looking at me like I was crazy.  It was so hard to say good bye to him that morning.  I was petrified of what was to come.  My husband put his arm around me and we walked out of the school together and headed to the hospital.

It was an hour drive.  I put on my Ipod with my relaxation music.  I just closed my eyes and tried to focus on the calmness of the music.  That was the longest one hour ride I had ever experienced.  It was surreal. 

This morning I put on that same selection of music on my Ipod.  It was different though.  This morning my husband went to work like a normal day.  I got my son up and got him ready for school.  I dropped him off for school and then I headed for the gym.  I ran 4 miles.  I then put on my relaxation music to stretch and do some yoga. It was calm.  It was peaceful and without stress. 

I listened to those calming songs and reflected back to this time last year.  It has been such a long year in some ways but in other ways it seems like surgery was yesterday.  I don't want to focus on all the bad things I have gone through in last year.  I need to look forward towards the rest of my life with a positive spirit.  I need to embrace some of the good things that I did experience in life this last year.  Life still went on despite what I was going through.

I am grateful for being done with my reconstruction (other than tattoo's).  I am so appreciative for the wonderful Bosom Buddies (my six dear friends that I met through breast cancer online) that came into my life and supported me.  I am lucky that I have a new closeness with family and friends because of what I have gone through.  I am thankful for finding Penguin Cold Caps so I was able to keep my hair through chemo and move on looking "normal".  I am fortunate to have the support of my "breast cancer mentor" Kathy that I met over a year ago at the cancer center.  She gave me hope and encouragement in my darkest moments right after diagnosis.  I am grateful for my husband and son and the new life we are building in a new city.  I am happy for the wonderful vacation I spent with dear friends and my sister in August to celebrate my completion of treatment.  I am blessed to have a wonderful best friend who has come to take care of me after two surgeries and came for my last chemo.  I look at breast cancer being very present in my life in the past year, but I see so many wonderful things that also happened that are part of my life too. 

I won't lie, the breast cancer journey is long and hard.  It seems impossible at times.  In time though, you realize that life is still going on every day and you have to continue to keep that in mind.  Not all of this last year was "bad" and related to breast cancer.  My son's first day of kindergarten was wonderful despite me having breast cancer this past year.  It's little moments like this that I need to cherish and remember from my "pink year".

Wednesday, January 18, 2012

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:








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.

Tuesday, January 17, 2012

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:

Monday, January 16, 2012

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.

Tuesday, January 10, 2012

What Will This Year Bring?

For the last year I have been completely fixated on breast cancer, chemo, surgeries, treatments and healing.  Unfortunately it became my life and my reality over the past 13 months.  Getting through all of the chemo and reconstructive surgery is a long, draining process.  It not only wears on you physically, but mentally.  For so long I kept wishing it would be 2012 so I would be done with all of that, but now that it IS 2012, I don't know what to think!

Lately things have been feeling more "normal".  With the help of time and medications, I don't fixate on the breast cancer 24/7 like I did in the past.  Don't get me wrong, I do still fixate on it, but not at the same frequency.  I can't imagine after going through a cancer diagnosis that anyone would be free from thinking about it. 

Now, life is busy with "normal" things.  I am still trying to get us settled into our new home.  I am organizing the house and cleaning.  I am back to cooking and blogging.  I hit the gym daily and run errands.  I am busy with the day to day things a mom and wife does.  I still have doctor appointments here and there, but not multiple doctors in the same week and someone always drawing blood like last year.  Overall, I am pretty busy most days and I am busy doing "normal" things, not "cancer" things.

Now that things are feeling more "normal" I don't know what to think.  How do I just go with the flow of that and not allow my brief thoughts of breast cancer grow into fixations again?  I am just going with the flow more and somehow that scares me.  It's almost like I am back to me again but I can't really be that same exact person.  In some ways I feel kind of foolish thinking things can be "normal" or carefree again.  In the back of my mind, tucked way back in the corner I still feel fear of the cancer returning.  I don't want to spend my whole life in fear, but I have to be realistic too.  I am not invincible.  I had breast cancer....me, the healthy one (so I thought). 

I never in a million years would have thought I would have gotten breast cancer.  When I talk to friends about having breast cancer, they all act like "well you must just have something in your body" and like they won't ever get it.  What's scary is, that's how I thought before getting diagnosed.  One in eight women will get breast cancer in their lifetime.  Right now, I don't have any other friends or family that have had it.  Who will be next?  It scares the crap out of me at times.  I keep thinking about the many women that are important in my life.  There are more than eight.  Right now I am the one in eight, but at some point there will be another.  Breast cancer sucks!

Thursday, January 5, 2012

Advice to Newly Diagnosed Breast Cancer Patients

It has been over a year since my diagnosis and in that time I have learned so much and come such a long way.  I recently signed up to be a peer to peer counselor for newly diagnosed breast cancer patients.  I have spent some time thinking about all of the things I have experienced and learned in the last year.  It is overwhelming to really think about.  I guess it got me thinking that some people reading this may be newly diagnosed and I wanted to share my most key learning's in case it helps others going through this breast cancer nightmare.

1.  Get second opinion and weigh ALL of your options.  I think that even if you think you may get a lumpectomy you should meet with a breast surgeon and a plastic surgeon and just hear what everyone has to say.  Get second opinions for both too.  I did and found hearing what each of the surgeons had to say helped me make a decision I could live with.
2.  You don't have to lose your hair during chemo. Penguin Cold Caps can work for some people depending on which chemo you have.  I had taxotere and cytoxan and the cold caps worked for me.  I finished chemo with a full head of hair and after chemo was able to move on with my life and not broadcast that I had cancer to the world.  Most doctors will not tell you about cold caps and if you bring it up, they will tell you they don't work.  I am telling you they DO work.  I have photos posted on here back in September that proves it. 
3.  Consider more medications!  I was always the type of person that never took motrin for a headache.  I hated taking medications.  Now I embrace medications that will help me. I am on tamoxifen and welcome it because it will hopefully keep me healthy despite some of the side effects.  I also welcome xanax at night to help me sleep and lexapro to keep me calm and reduce my anxiety over dealing with breast cancer.  Honestly I would never in a million years think I would take xanax or lexapro, but I am glad I do have them and it has made things a lot better for me.  Don't be afraid to talk to your doctor about this.  Breast cancer is a lot to deal with so there is nothing wrong with a little help.
4.  Connect with people that "get it"!  I am fortunate to get a lot of support online from other women that are going through breast cancer too.  I still participate in online message boards and a private facebook chat group of dear friends I met through having breast cancer.  I could not have gotten through this without my good friends that are also living this nightmare along with the message boards where I have gotten great advice and support. 
5.  Don't let your anticipation get the best of you.  Every step of the way I worried and had huge anxiety over what was to come.  I was an emotional wreck and freaked myself out so bad before each procedure or chemo and expected the worst.  What I found is that most things were actually easier than I anticipated (don't get me wrong...it was not cakewalk!).  I just had extreme fear of the unknown and made it worse in my head that it actually was. 
6.  Don't think about the "big picture".  Take it one step at a time.  I think if you look at the entire breast cancer road ahead of you, it is just way too much.  I did better just focusing on the next step I had to deal with and not the whole thing all at once.  This kept me a little more sane!
7.  People act stupid when the word "cancer" comes up.  People just don't know how to act.  Many people will let you down while you go through breast cancer treatment and surgeries.  Some people that you think really care about you won't even acknowledge your cancer or offer to help.  Some don't even call.  In time I have grown to realize it does not mean they don't care, they just don't know what to say or how to act, so they do nothing.  I won't lie, it hurt me a lot that some people acted like they were ignoring me, but I really think they just didn't know how to process it. 
8.  Exercise is important.  I exercised daily through chemo and treatment other then when I was instructed not to exercise.  It helped me physically and emotionally.  Exercise not only made my body stronger, but helped reduce my stress levels.  I think it also helped me focus on feeling GOOD, not crappy through treatment.
9.  Attitude matters - A LOT!  I told myself I would not be that sick girl going through chemo...and I wasn't.  I got up every day and exercised and tried to do everything I normally did before chemo on a daily basis.  The more I kept moving and acting normal, I did not focus on being sick from chemo.  Granted some people take chemo harder than I did, but I do believe the more you buy into feeling like crap, you will feel like crap.  Just my opinion. 
10.  Remove bad foods and toxic items from your life.  I read The Anti Cancer book and it helped me understand which foods are bad for cancer patients and that actually fuel cancer.  I have been able to adjust my eating to make me healthier and hopefully decrease my odds of recurrence.  I have also read a lot on the internet about toxic ingredients and hormones in body care products.  I have also changed make up, lotions, deodorant, toothpaste, shampoo, conditioner, hair color, cookware, plastic containers, water bottles and cleaning supplies.  The world is full of toxic chemicals so I am avoiding the ones I can avoid.  It takes a lot of time to research this stuff, but it is worth it.

I am sure there are countless other things I have learned, but these are the things that stand out the most in my mind right now.  Breast cancer is a long, complicated and exhausting process.  I am sure I will continue to learn more things as I move forward surviving breast cancer. 

Monday, January 2, 2012

How Did I Do?

The new year often brings about a lot of reflection and thoughts about your life, last year and the new year to come.  For me it really brought me back to where I was at this time last year.  It was a pretty bad place for me.  At this time last year I was filled with fear, anxiety and so much unknown about what was to come with treatment.  It was very overwhelming and emotional. 

I am not usually one to make any type of new year resolutions, but last year I did.  I guess I needed some goals to shoot for and a way to look to the future.  I have not looked at those resolutions until now.  I really don't remember too much of what I wrote as it was a crazy time, but now I want to know how I did at following through.  Here are my resolutions and results:

1. Complete all surgeries and close the door on breast cancer. (I did have my last surgery on December 9th!!!)

2. Take a great family vacation filled with fun, good times and laughs once my surgeries and treatment are complete.  (A few months post chemo and after I got my real implants, I took a vacation to the Outer Banks with my dearests friends, their families and my sister and her kids!)

3. Get back to teaching my aerobics classes as soon as possible.  (I did get back to teaching aerobics a few weeks post chemo but when we moved I had to give up my class.  I am subbing classes here when I can but have not found a regular class to teach weekly - no one is hiring but I am still looking and subbing!)

4. Become a peer to peer counselor for women newly diagnosed with breast cancer.  (I actually just applied a few weeks ago and just got an email back asking me to schedule an interview so this may be in process!)

5. Raise money to help fight breast cancer! Get involved and make a difference in finding a cure!  (Oh no...I have not done this at all yet.  Actually I don't think I am emotionally ready.  I just was so repulsed by Pinktober I just couldn't go there.  I hope to get my head on straight and do something this year for the right breast cancer organization).

6. Don't sweat the small stuff...just say "who cares"? .....this will be hard...I am completely type A and a worrier!  (I am doing much better on this especially since I started taking Lexapro.  I am the one telling my husband to chill out which is rather odd for me!)

7. Get my business up and running and leave my current job. I need to bring in some money so I can make this happen.  (I did do half of this one...I did quit my high stress job in the corporate world, but I have not done much with the business.  I had high hopes but I did not plan on moving out of state and moving twice in four months.  I will work on this for 2012!)

8. Be the best damn mom, wife, daughter, aunt, sister and friend I can be! Tell everyone I care about how much they mean to me and make sure they know I love them! (I feel good about this one.  Since quitting my job and moving, my son and I are even closer.  I also think my husband and I are closer too - and happier.  I am far from my family now because of moving but we are trying hard to stay close by phone, internet and visits).

9. Lose a little of the "type A-ness" in me. Learn to relax, meditate, do yoga or something that will allow me to slow down and enjoy simple moments in life instead of always trying to conquer the world and plan a dinner party.  (I have been attending yoga and the cancer center when I can and hope to make it a weekly thing.  I also do some yoga, relaxtion and stretching after every workout now.  It is very calming and clears my head).

10. Continue to bring a more spiritual presence into my life and celebrate religion and faith as a family.  (I need to be more focused on this one in 2012.  We just found a new church we like and joining the parish is on my list of things to do in January!)

11. Smile. Love. Be positive. Be happy. Just BE!  (This will always be a work in progress but I am doing well with this one!)

Now that I review all of these, I am proud of myself.  I really have not looked at these in a year and I actually have made many changes in my life towards these resolutions.  I think these changes were for the best.  Now the question is, what do I want to accomplish in 2012?  I am going to have to give it some thought and create my 2012 resolutions.  It is good to have some goals to shoot for!