Everyday is a Gift and 10 years is certainly a Blessing!

I sit in shock as I learn about the developments of the devastation in Paris. I was just there the end of September to enjoy the beauty, lights, fashion, history, art, food and overall allure of Paris.  This is another reminder that life is uncertain and precious.  

Tomorrow I celebrate my 10 year since I was diagnosed or my Cancerversary.  I'm having a tough time this year.  Someone in her 30's passed last month.  Some in her 30's passed last week.  Someone that is in her 30's is not doing well now and it is all because of something so unfair and so far no known cure for it:  Breast Cancer.  

War on terrorism and war on cancer have so many similarities and yet so many differences.  The stark difference is that terrorism happens to be because of choices people make.  As for cancer, typically good life choices and our environment MAY help combat cancer but many times it is because our cells start to multiply too quickly.  At times it may be genetics but we're finding it to be about 10-15% of most cancers.  It may increase as more and more genetic tests are being offered for breast cancer.  Since the June 13, 2013 the Supreme Court ruling against the BRCA testing, it went from 2 genetic mutations to testing 23 that are standard and newer companies testing 30 mutations and all for a much less expensive cost!  Talk about amazing!

Anyway, back to my post.  Yes, all this is scary.  Happy 10 year Cancerversary to me.  It is a nice to acknowledge that but it also hurts to so many are dying and suffering because of this disease.  Then it angers me to know that hundreds of people died and are injured from last week's terrorist attack in Paris.  Live well.  Live with intention.  Be kind to yourself and others.  We have only this one life.  

Ovarian Suppression Update

So I mentioned the SOFT study which is suppression of ovarian function through surgery or induced by drugs and including Tamoxifen or Exemestane.  This was discussed at the San Antonio Breast Cancer Symposium 2014.  

There doesn't seem to be too much difference between the two.  Both seems very beneficial though Exemestane did a little bit better.  The most important thing is that they felt ovarian suppression with one of the drugs seems to be helpful and even more so for those that were diagnosed at 35 and younger and at high risk of recurrence.  (High grade, larger tumor, needed chemotherapy, node negative and younger when diagnosed.)

I just listened to a webinar and it seems as if they encourage this switch from just Tamoxifen alone to ovarian suppression and another endocrine therapy within 2-3 years.  The is no data for those 4.5 to 6 years for younger women.  There are studies that it does benefit to those that are older though.

This slide also came from the webinar.

Like with everything else, this is not a one size fits all.  Do your research, see if it's right for you and always consider quality of life.

10 Years of Tamoxifen

So I wrote a blog almost two years ago when the ATLAS study came out recommending everyone take Tamoxifen for not just 5 years but 10 years.  There are now two other studies the SOFT and the TEXT.

TEXT (Tamoxifen and Exemestane Trial) and SOFT (Suppression of Ovarian Function Trial) should have a more definitive study at the SABCS next month.  Ovarian suppression is usually with a shot to shut down the ovaries.  My oncologist was willing to let me take a break until I figure out the whole baby thing before having me on another 5 years of Tamoxifen though now she will probably push whatever they find in December.  I'm not so happy about that but I also know that those that are estrogen positive can be more susceptible to recurrences.

For now we've negotiated baby Aspirin, even if it is just 3 times a week.  I haven't been so diligent about it but I've been focusing on losing some weight but it's been challenging with all my injuries for the past year.  Aspirin is used because studies found that it can help decrease inflammation which we know that inflammation and cancer isn't a good thing.

So...more to come.  I'm sure I'll know more this time next month and won't even need to wait until my next appointment to know what she is leaning towards for me.

Until then, I will try to find my happiness each day.  I just got back from an amazing trip to Estes Park, CO.  I can't believe how blessed I've been this year with all the beauty that I've witnessed!

Up close and personal with an Elk

Emerald Lake

View from my room.  Estes Park Lake with morning fog

Dream Lake

I felt like I was on top of the world and the luckiest gal alive!

Mills Lake

Oh Baby!

So when I think of babies, I now see this:

 

It's obvious that babies and children are expensive.  You're liable for them until a minimum of 18 and we know true love never ends...sometimes that includes money.  In my case and for many others that have gone through treatment to cause infertility or early menopause, the money starts well before the baby takes their first breathe.  Say what?

Certain treatment can cause either men or women to become infertile or to go into menopause earlier. For instance, in my case, I had chemotherapy at 29 which killed both my mature and my immature eggs thanks to a certain chemo cocktail I was on.  Cancer treatment can age our bodies.  Earlier articles I read said it was 10 years but more recent one said it could be more than 10 so that was not so fun to read.  For some cancers, ovarian for example, removing the ovaries right away to rid the cancer can pretty much be a deal breaker for biological children via Mother Nature UNLESS...drum rolls please...unless us humans intervene.
 

Good doctors will recommend their patients see a fertility specialist to possibly bank their sperm or eggs. Thankfully there are actually many organizations now that can provide help covering this expensive process. Unless you make a lot of money then you should qualify for at some assistance because unfortunately most insurance companies will cover any of this.  I truly hope this will change in the near future.  Also, most of these will fund those up to 40 years old!  I think it's great that it's 40 because 40 is the new 30.  So if you are younger and still think of possibly having biological children, check out the links below.  There is no harm in saving some of your eggs/sperms because you just never know what the future holds.
www.fertileaction.org

www.fertilehope.org

www.reprotech.com

www.caporalassistance.org

I recently found out that Fertile Hope actually will help with expenses too for those post treatment as long as a doctor signs off that they had treatment to cause early infertility.  Again, the max age is 40 but I think this is great!  
I think this is great because there is a very good chance I may not be able to naturally conceive and the longer I way the less quality eggs I have leading to  a decrease chance to natural conception.  The fertility doctor feels they can stimulate my ovaries to reserve and freeze some of my eggs but he feels my egg quality pretty much is old and dry. He didn't actually say that but that is what I took from our conversation.  Then when I am ready to have a baby they can do IVF.  For someone with my low AMH levels he hasn't had any successful births.  He's smart.  Therefore he did not recommend this option.  Overall he said it would be a 2-3% success rate.  

He recommends using a young, good quality donor egg from someone in their early 20's and then doing IVF when I'm ready. He estimates at 55% pregnancy rate THOUGH  pregnancy doesn't actually mean there can't be chances of complications and miscarriages.  The success rate is better but it wouldn't be my eggs and it's almost like a flip of a coin.  

Egg donor IVF cycle fee is roughly $14,000 and this does not include other medications and labs.  I don't think this includes the cost of paying for the donor eggs. Most likely it would be $20,000. This route it typically more expensive since you have to pay for their lab work, etc so easily over $20,000.  
 
Standard IVF Cycle with all the medications and labs are close to $20,000.
Again, even going through all this it does NOT guarantee a successful birth because of miscarriage, etc.  

Key points:  Speak with a fertility specialist if at all you may consider having children one day.  Don't let the expense scare you. There are programs to help fund it!  Also, most treatments can be delay a few weeks unless all those on your medical team feels as if you need to move on your treatment ASAP.  The younger you are, the more good quality eggs (and I'm assuming the same with sperms) you have.  However, if you're like me and felt to overwhelmed when it all started, there may be options post treatment but try to do it while you're younger.  It's not impossible but it sometimes feel overwhelming.

x

Wheat Free & Gluten Free Means EXCELLENT lab results?

I just got back from my 6 month follow up and my labs are SUPER!  My oncologist asked me what I've been doing and that I need to keep it up.  I yammered away that I've been eating too much and talking about being perimenopause and completely forgot to bring up something very important.  I've actually haven't blog about it yet either!

Back at the end of September I had a horrible hive break out. It started about lunch/after lunch and didn't go away until 10pm that evening.   I have shots from 3pm, 6pm and 9:30pm.

This was taken at 3pm

This was taken at 6pm. 

This was taken at 9:30pm.

I have more photos but I think you get the point.  I was covered from head to my knees in hives.  At first I initially thought they were bug bites.  (All this time I thought bugs loved me in Austin and I would have to come get my place sprayed but now I realized that some of these "bug bites" were really hives!  None of my prior breakouts have been nearly this bad.)  I finally went to see the nurse next door to get some cream for it but she took one look at it and told me they were hives.  I took two Benadryls and it didn't seem to help. 

Thankfully I messaged my family and my brother said Zyrtec works for him.  I was miserable and scared...just waiting to go to the ER in case I wasn't able to breathe when I finally went to get some Zyrtec.  I took it shortly after 9pm.  You can see from the photo above that was taken at 9:30pm.  I was able to watch hives pop up on my body and watch it grow.  By 10pm most of them gone and the pain and itchiness was also gone!  

I've been highly allergic to many things all my life but have NEVER been to see an allergist.  I'm either crazy or stupid or both.  This put enough scare in me that I made an appointment with an allergist and saw him soon after this episode.

The skin test which isn't always accurate showed that I'm highly allergic to many, many environmental things. Good to know so I"ll stay away as much as possible from them and take my allergic meds during high season.  The food tests came back negative and the person that did the test told me they usually come back negative.  I felt mine also had to be related to food since it happened around lunch time.  

I went to a vegetarian restaurant in Austin so I had a large salad and a few bites of bread before it fell on the floor.  Harmless enough? Not really but I guess the universe was really telling me something.  

I pressed my allergist to do more test.  He agreed.  6 vital of blood later and a hematoma, we found out that I'm highly allergic to fire ants.  I'm so allergic that her prescribed me an epipen.  The last time I recall an ant bite was September 2012 and my foot swelled up. For those of you that don't know too much about allergies, it's usually after several exposures to things you're allergic to that makes it worse.  I've been bitten by ants before but the September 2012 one was a pretty bad reaction for one little ant.  He cautioned me that ants tend to bite several times or there may be several ants so for me to be cautious.

On to food allergies.  I was able to test up to 23 foods.  I knew what I had at the restaurant so I checked them off to be tested.  My test came back positive to wheat.  He wants me to avoid wheat and gluten.  The level I'm allergic to them thankfully isn't as high as the fire ants but I'm allergic none the less.  I'm not gluten intolerant or sensitive.  I'm allergic to it.  I may not go into anaphylactic shock from it but it taxes my immune system and can cause other issues.  

After avoiding most of wheat and gluten (not exactly the same thing but I avoid both,) for a few months, I was a little careless in November during my birthday.  A few bites here and there of cake and tastes when eating out with friends made me feel like I was sick a few days later.  I put two and two together shortly after.  Same thing with Christmas.  I stayed away from big amounts of wheat/gluten but still had some in sauces (so hard to avoid!) like the enchilada sauces, salsa, etc that I had itchy legs while in NM.  I know it's dry there and it was winter but I'm starting to know how I pay for consuming it.  

My red blood count (RBC) is almost always low.  It's been like this for the past 8 years.  I think I may have posted on it.  My hemoglobin is in the low range so never really concerned my doc regarding anemia. Anyway, my RBC when I did all the lab work for my allergy test showed that my RBC is in the low normal range which is uncharacteristic.  

I'm usually high on my MCH which is the hemoglobin amount per red blood count.  

My platelets PLT are always in the range I wanted to show this comparison.  

I didn't really think about it until today's lab results.  

RBC range is 4.2 to 5.4/MCH range is 27-31/PLT range is 130-400.

October 4, 2010 4.07/32.4/249

December 29, 2010 3.93/32.7/241

April 26, 2011 4.08/31.8/257

September 2, 2011 4.02/32.8/246

March 26, 2012 4.05/32.1/248

September 24, 2012 4.06/32.8/253

March 18, 2013 4.03/31.9/263

September 16, 2013 right before the hive breakout was 4.09/32.6/243

October 11, 2013 my allergist just tested my RBC but it was 4.43!  This was with just a week or two without wheat/gluten!  

Drum roll please!  This is about 6 months after my breakout so I've only consumed minimal wheat/gluten:

March 17, 2014 it was 4.44/30.1/318

My RBC never have gotten above 4.09 since 2010 and My MCH has always been high and never gotten below 31.8.  My PLT has always been in the norm but have always been in the 200's and now it's in the 300's!  

So NOW I know why my labs were so good!  I'll need to email my doc about it and hope to see the same results six months from now!  I'm not happy I gained 2 lbs since I last saw her but this is good news!  I think my immune system is happier with me and not taxing my body as much!  Yahoo!  

Wheat is my enemy though it look so harmless.

Anyway, so much more to blog about but wanted to get this out there for those of you experiencing some issues with your allergies and low labs.  Our diet is so important.  Knowing what is wrong with your body is so important and keep pressing your docs to run more tests!  Pay for it out of pocket (if you can afford it that is) if you have to!   I never thought I ate that much wheat/gluten because I never ate so much carbs to begin with but I guess I ate just enough to tax my immune system.  So imagine if I ate the standard American diet of it!  Yikes!  Also, I never blogged about my Italy trip!  I went last April/May 2013 and ate too much dairy and pasta and pastries.  I thought my allergies and tummy issues were from the pine tree and possibly too much dairy and pasta since I usually don't consume most of it.  I was suffering a great day and by day three I was mainly dairy and pasta free until just dinner.  I was able to make it through the rest of the trip just fine but I did sneeze and have itchy eyes throughout my Italy trip. For some reason I did bring two Bendryl and took the two while in Italy.  London wasn't such an issue mainly because I was able to find Whole Foods and eat more greens and kale juice there.

More about my change in diet and gluten but wanted to share this amazing discovery of my labs!  

Hip Bone is Connected to the Thigh Bone

I DON'T want to break, even if I'm Breaking Bad!

So this blog was set up many years ago to share with my loved ones my progress and to educate anyone that possibly stumbled across this on their research regarding cancer and survivorship.  I really don't think any of my friends read this anymore but it feels good to the soul if anyone can possibly learn from my experience. I'm not the best writer nor have I blog consistent enough but I truly hope I've helped at least one person.  If so, I've done what I set out to do.  

Recap, I was diagnosed November 16, 2005 at 28.  Fast forward to today I'm now 37 and I'm in survivorship mode.  Survivorship tends to be the hardest on most since the "fight" is over and then you have to live with how you've mentally and physically changed.  What I always find hardest is that we'll never know sometimes if it's because we're truly getting older or if treatment has a hand in all this.

Anyway, back to my original topic of BONES!  Because of my last discovery that I was in perimenopause, I immediately asked for a bone density test.  I had a baseline one.  I had one done shortly after I finished chemo and I suggest everyone that has chemo or have things done with their ovaries ask they med oncs about it.  Baseline tests can be good because then they can use it to compare it to when they perform the test in the future.  The reason why you may want to have it check from chemo or ovarian treatment is because those treatments can disrupt your estrogen which tend to help your bones.  That is why older folks, mainly older women, have a higher chance of having osteoporosis.  Osteoporosis are porous or fragile bones more susceptible to breaks.  Most folks are recommended to have this test done every 1-3 years so talk to your docs.  They may or may not bring it up on their own.  They are super busy and see so many patients in a day.  Be your own advocate! 

I had mine done back in the days and it was normal for someone my age.  So I have decent bones going for me with my latest news!  My lumar actually shows a slight increase (these test aren't 100% accurate) and my thigh and hip bones showed just 3% decrease in bone density.  I'll take that!  No changes in my life style are recommended.  I know the lower body has bigger bones but I do weight bearing exercise, usually take my calcium supplement and try to eat a fairly healthy diet.  All this tends to help and that means I'll continue to do all this and may up my weight bearing exercise more since that's just a win win.  I also have to admit that my cal/mag supplement a dose is two tablets.  I tend to only take one so I may need to take the full dosage since I found out about my perimenopause issue.  Things to think about because we have one body so lets take care of it!  

Pausing.. forever?

Pausing can be a good thing, right?  Right, it can make us slow down and think things through.  Well this is certainly the case for me.  The pausing I'm talking about it perimenopause.

This is the definition of perimenopause according to Mayo Clinic:

Perimenopause means "around menopause" and refers to the time period during which a woman's body makes its natural transition toward permanent infertility (menopause). Perimenopause is also called the menopausal transition.

Women start perimenopause at different ages. You may notice signs of progression toward menopause, such as menstrual irregularity, sometime in your 40s. But some women notice changes as early as their mid-30s.

The level of your estrogen — the main female hormone — rises and falls unevenly during perimenopause. Your menstrual cycles may lengthen or shorten, and you may begin having menstrual cycles in which your ovaries don't release an egg (ovulate). You may also experience menopause-like symptoms, such as hot flashes, sleep problems and vaginal dryness. Treatments are available to help ease these symptoms.

Once you've gone through 12 consecutive months without a menstrual period, you've officially reached menopause, and the perimenopause period is over.

So...you're probably wondering why I'm blogging about this since I'm JUST 37.  I started this blog when I was much younger so I guess the word just isn't really justified?

About this time last year I had my FSH and AMH levels checked.  These tests are used to see how active my ovaries are and to see about my egg reserves.  When I checked 12 months ago I was holding steady for someone my age.  My number was just a tad lower, most likely from chemo treatment.  Fast forward to present day and I found out my test results have changed drastically!  It shows that I'm...gulp...in perimenopause!  Perimenopause!?!?

This means my chance of natural conception will be much more challenging AND that I'm heading towards menopause.  This would explain the trouble with my sleep, feeling emotional at random times beyond when I'm supposed to, feeling as if my joints are creaky and always feeling hungry beyond when I'm supposed to feel super hungry hence dealing with my weight.  I just found this out so I'm still processing all this.

For a lack of better word this sucks.   I obviously know I'm fortunate and blessed in SO many ways but I know it's also okay to acknowledge my disappointment and it's another reminder of how my cancer treatment, mainly cancer, has continued to interfere with being a "normal" 37 year old.  We'll never know if it was from treatment but I'm highly suspicious that it killed some of my mature and immature eggs so my overall egg reserve dropped, especially while I was on cytoxan.  (I think that was the one I read that tends to destroy the immature eggs too.)  Will need to process and then go from there.  

Moments and Memories from 2013

Ziplining on a gorgeous day in Wimberley, TX.

I have a Moments and Memories Jar because it's so easy to remember and dwell only on the negative. This helps me appreciate my life and reflect on all the wonderful things I experienced and accomplished in 2013. To share just a few:

I completed the first thing on my bucket list which was to see David and the Sistine Chapel. Thank you Lori I'll never forget this and I so appreciate your friendship.

The Supreme Court ruled in our favor stating that Myriad cannot patent the test so now other companies can perform the test AND cost have dropped!

My nephews are growing up so incredibly quick and getting so independant. I'm so thankful for the quality time I spent with them over the summer and winter.

I've done more and more public speaking and I feel I'm more confident with each one.

I'm so proud of Sis Kelly and our work with the #BP5K. (Mainly her since she's the brain child behind it all.) It was amazing to see all the hard work pay off and how many lives it touched.

My "step out of my comfort zone" for 2013 was ziplining in Wimberley in November. It was so much fun and I would certainly do it again!

Learning to forgive is so powerful!

I'm so thankful that I'm still friends with my good friends in NM. I see them about twice a year but time spent with them always warm my heart!

I appreciate ALL the friends I've made because of my cancer diagnosis. No one wants to have it but you meet the most amazing, loyal, fun and kick ass people. Thanks, all!

I love my Austin friends that we make time out of our busy lives to try to see each other when all our schedules are so crazy different. 
My work is fulfilling and helps keep me balanced. I feel like I get to make a difference in someone's life each day.

New Mexico 2013

Some of the things I miss most about Albuquerque are the sunsets, the green chile, local eats, my friends and most importantly my sweet nephews.  I started watching Breaking Bad so I was able to stop by Walter's house and the Car Wash.  With all the food I ate, I managed to have a green drink each morning and to stay away from most gluten items.  I certainly was able to tell when I ate gluten because my skin really itched and it didn't help that NM is so dry.

Sunset in Albuquerque

Gluten Free Christmas Huevos Rancheros from El Pinto. 

Fried Green Chile from the Range.  I only had a bite since it has gluten.

Lunch at Frontier

Gluten Free brunch at Cafe Lush using local and organic produce when possible.

Cheers to Green Drinks!

Walter White's house

Car Wash from Breaking Bad

Visiting with my girlfriends at Flying Star Cafe.  They also use local and organics when possible.

Having brunch with my girlfriends at Cafe Lush before hitting the road back to Austin.

37 and Being Thankful

I turned 37 and for the most part I'm so grateful for another birthday because not everyone I know will get the opportunity to celebrate one more birthday.  I actually get sad on Facebook when someone that passed already and a reminder pops up to remind me to post a birthday wish on their wall. 

So I turned 37 and I do feel more mature.  I feel as if my health is stable.  My job is fulfilling, my friends are great and my beau is super sweet. Typical Austin we had a cold front blow in when it was in the 80's just a few days ago.  It appeared it would be a dark and dreary day but I arrived to work to find my office phone ringing and a friend singing happy birthday to me.  I had a voice message that a coworker sang happy birthday to me in both English AND Spanish.  I've never had that happen so that was pretty neat.  I got some gifts from my sweet coworkers and even some gluten free goodies.  (I'll need to blog about that soon.)  It's hard to find gluten free goodies, even in Austin, so it was a nice treat.  I even had flowers delivered to my office.  Even with all that I had a busy day at work that always leave me feeling whole and warm inside.

Dinner was at Uchikos and was amazing as usual.  My two favorite dishes are below:

 Mushroom, basil and peanut works so well together in a roll!  What a great combination of flavors! 

 Best dessert EVER!  I didn't ask if this was gluten free but it was pretty darn amazing and worth the small amount of gluten.  The bottom was layer in a chocolate type of oreo cookie crust.  Then there was a large chocolate ganache, raspberry sorbets, raspberry caviar, microherbs, grapes and then this cream ball. Talk about a party in your mouth!

Saturday was dinner and drinks with my girlfriends at T'jeas and JBlacks. 
Sunday friends picked me up for Catching Fire and the new movie house with yummy food.  I ordered a goat cheese salad, gluten free, and it was pretty amazing.  The company, food and movie were top notch!  


A few weeks prior I had an early celebration with my super sis and we watched Harry Connick Jr. She's my super sis that is 366 days younger than me and she'll never let me live that down. 

Thanksgiving is usually very close on my Birthday or it usually falls on my Birthday. This year I was a whole week ahead but it's always a great time for me to remember why I'm so thankful.  Emotionally it was a roller coaster of a ride but my cancer keeps me grounded.  It makes me appreciate the little things.  It makes me appreciate the innocent.  This is little Hana bear about 1.5 years old.  She's happy as a clam with her croissant.  I'm thankful for her and for my nephews.  I'm thankful for my health and all those that I love.   

Mamma Jamma 2013

On October 26, 2013 I rode in my 4th Mamma Jamma Ride.  I rode 72 miles my first year and then 46 the rest of the years.  This year I only trained for 20 and rode 46 so I'm pretty happy with myself.  The last 16 miles were pretty tough but it was such a great time to reflect and feel the women that we've lost to this disease.  I rode most of it alone but I knew I was never really alone.

I also raised over$1000 which was the most I've ever raised!  Not bad for just sending out a few emails and doing the rest over Facebook!  It also warmed my heart because so many clients donated.  The work that I do it's the little things (in this case big things) that counts.  My heart is full and it was a near perfect weather! Many thanks to all my friends that continued to support me each year!  Much love to you!

8 Year Cancerversary

Yesterday marked my 8 year Cancerversary.  Remember that I used to truly celebrate it but now I'm almost scared to jinx myself.  So on Saturday I went to get my hair cut (probably because is signifies control,) had lunch with a dear friend and then friends came into town so had dinner and a wonderful time catching up with them.  Besides on Facebook I never publicly told anyone about it.  I'm not waiting for the other shoe to drop but as I repeat I do not want to jinx it.  It was a lovely day and keeping busy made me forget how my life was completely and forever changed on the afternoon on November 16, 2005.

Pinktober Reflection for 2013

It's been a while since I've blogged.  In some ways that is a good thing.  It means I've been busy traveling, living and doing other non-cancer related things. However it is October and I feel it's time for reflection.  

A few years ago the color pink became a taboo color because so many companies were profiting from pink products.  Many survivors felt exploited.  It's a shame because the color pink and the pink ribbon is so powerful.  Most cancers do not get the recognition breast cancer gets.  Some cancers are envious of all the attention and money that is poured into breast cancer.  I don't blame them.  Every cancer and disease is just as important, especially for that person living it with.  

I know first hand how much a diagnosis can change you.  I see first hand how a second diagnosis can really flip your world upside down.  The second diagnosis, whether it be an early stage cancer or if it ends up being more aggressive and metastasis can almost make you feel defeated.  First time is a fight and then you feel as if you won.  Second and third time reality hits even more about your mortality.  Cancer wins way too often.  I've attended more memorial services than any 36 year old should need to attend.  Just when you think you have cancer behind you then BAM!  It's back!  Once it metastasis you wonder how long you can keep it in check before it outsmarts the doctors and drugs.  

For me the Pink Ribbon is not a product you purchase or something someone profits from.  The Pink Ribbon is about HOPE.  Survivors hope the cancer will never return again.  Those that have metastatic breast cancer hope that they can keep their cancer stable.  They hope to see an old age.  They hope to see their children grow up.  

I was asked to give a speech earlier this month on being brave.  I don't always feel so brave.  Cancer wasn't a choice I would have picked for myself.  It found me. Regardless, I guess I could have crumbled but instead I decided to help others living with the disease.  Below are two photos from that evening.  The bottom one is from someone I met six years ago after we suffered a loss.  That is a perfect example of the love and connection you feel when you go through something like this together.  This is another example of the power of Pink.

Brain Power 5K 2013

Since it's inception in 2010, I've always been involved with the Brain Power 5K.  Kelly Bolinger is the founder of this nonprofit.  It provides fund for brain cancer research.  Her involvement started with she was diagnosed with brain cancer in 2006.  Read her compelling story here and why you would want to help too! 

Kelly and I are good friends and even call ourselves "Sis."  She has worked immense hours each year to make this race more and more successful in terms of size and amount raised.   She even started a blog to keep people in that community up to date.  She even started a marathon relay race at Lady Bird Lake in May consisting on all brain tumor survivors!  How neat is that?  

Anyway, please consider being involved somehow.  You can run, walk, volunteer, donate, sponsor or simply pass along this wonderful cause!  Thanks so much!  This year the 5k will be September 8th.  

Feminine Products

I recently read an article on feminine products and whether or not they are safe.  I switched over to organic brands soon after I was diagnosed with breast cancer.  It just made sense to me to use organic products down there if I was going to consume organic produce.  Naturally organics does cost more but aren't we worth it?  Most women's cycles probably last 4-8 days each month give or take.  We expose ourselves to 48 to 96 days of feminine products in a year.  That's a large amount!  There are other alternatives but just something to consider.

The Supreme Court Decision

It was a unanimous decision! The Supreme Court ruled in our favor invalidating patents on the BRCA genes on Thursday 13th! Basically it uplifts all patents on all genes that are naturally occurring.  Only complementary or synthetically created DNA or cDNA can be patented since those are not naturally occurring in nature.  Down the line there may be more issues surrounding the cDNA but not enough for this situation.  Right now 5 known labs are going to offer the BRCA testing by the end of the year and for a half or a third less than what Myriad originally offered it.

How do I feel about it all?  It's finally sinking in.  I set myself up for us to get an unfavorable outcome so I wouldn't  be set up for disappointment but now we claim this decision as a victory!  Also, where do I go from here?  I need to see about getting my variant studied/tested.  I'm sure more to come but my blog can now go back to being live!

Being Scared

For many years now I no longer dread the scans so much but rather from the prep, radiation, iodine, high deductibles, etc.  Some how I always felt confident that my surgeon and oncologist did their job and that I went aggressive.  I even tell myself if it did come back I would hopefully find it early again.

My yearly routine doctor's order has been on my refrigerator since my last visit with Dr. H back in March. I'm not sure if I wrote why we chose to go with the ultrasound again or not but it's because I didn't want the gadolinium with steroid prep for the MRI and I did not want the mammogram since it didn't work for me the first time and I rather not expose myself to that amount of radiation from a CT scan.  We agreed that I can do one more year of the ultrasound but then back to the MRI or CT for 2014. Anyway, somehow I finally scheduled my bilateral ultrasound for June 6, 2013.  

I went in today expecting to get into work on time.  The tech started with my right cancer breast and seem to take more time near my arm pit/lymph node area.  I told her that there may be scar tissue from the sentile biopsy.    Anyway, what seemed like 10 minutes later, she finally moved on to the other breast.  I tried to be very aware of not confusing time on the two or magnifying it since I was actually watching for her to spend less time on the left breast.  I did not look at a clock but it was pretty obvious she did not spend as much time on the left breast.  So the entire time I was thinking that the cancer was back and in my lymph nodes.  I thought how I would have to start all over with chemo, possibly more surgery, possibly radiation this time and then on and on and on.  My life is happy and good and I'm starting to think about my future as a whole and then I haven't visited Greece yet and that might be my next big trip and it kept going on and on and on...just like this one long run on sentence.  It made me scared inside and I wanted to hibernate into the safety of my shell.

Thankfully the doctor was there to read it but even that felt like it took forever!  All the run ons kept circulating around in my head.  The tech came in and told me to keep up the good work and keep doing what I've been doing.  It relieved me but just part of me.  I still want to get my hands on the write up.  I don't want to go crazy and ask for further testing either.  You're probably thinking why didn't I ask the tech more questions.  By law they cannot tell me what they think they see, especially if it is cancerous since they are not doctors.  Trust me, I tried many years ago.  I'll wait to hear back from Dr. H's office.

So tonight I cried.  I realized it was the first time in a long time that I was scared again.  This November marks my 8 years since I was diagnosed with breast cancer.  My life has changed in so many ways, and so many of the changes have been for the better.  However I'm not naive about the reality of cancer.  I always say that it's not prejudice to anyone age, ethnicity or health.  It's a good reminder to live each day.  I'm going to wait for the write up and to just to remain calm and to carry on.

Angelina's Medical Choice

Angie always knew how to make a splash and her announcement that she had the BRCA1 mutation and had a  preventative bilateral mastectomy shocked the nation.  Some deem her as a hero while others are outright bashing her.  Her article is below and my two cents (if anyone cares to know it) follows.

My Medical Choice
By ANGELINA JOLIE
Published: May 14, 2013 1712 

MY MOTHER fought cancer for almost a decade and died at 56. She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was.

We often speak of “Mommy’s mommy,” and I find myself trying to explain the illness that took her away from us. They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a “faulty” gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.

My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.

Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.

Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.

On April 27, I finished the three months of medical procedures that the mastectomies involved. During that time I have been able to keep this private and to carry on with my work.

But I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.

My own process began on Feb. 2 with a procedure known as a “nipple delay,” which rules out disease in the breast ducts behind the nipple and draws extra blood flow to the area. This causes some pain and a lot of bruising, but it increases the chance of saving the nipple.

Two weeks later I had the major surgery, where the breast tissue is removed and temporary fillers are put in place. The operation can take eight hours. You wake up with drain tubes and expanders in your breasts. It does feel like a scene out of a science-fiction film. But days after surgery you can be back to a normal life.

Nine weeks later, the final surgery is completed with the reconstruction of the breasts with an implant. There have been many advances in this procedure in the last few years, and the results can be beautiful.

I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer.

It is reassuring that they see nothing that makes them uncomfortable. They can see my small scars and that’s it. Everything else is just Mommy, the same as she always was. And they know that I love them and will do anything to be with them as long as I can. On a personal note, I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.

I am fortunate to have a partner, Brad Pitt, who is so loving and supportive. So to anyone who has a wife or girlfriend going through this, know that you are a very important part of the transition. Brad was at the Pink Lotus Breast Center, where I was treated, for every minute of the surgeries. We managed to find moments to laugh together. We knew this was the right thing to do for our family and that it would bring us closer. And it has.

For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.

I acknowledge that there are many wonderful holistic doctors working on alternatives to surgery. My own regimen will be posted in due course on the Web site of the Pink Lotus Breast Center. I hope that this will be helpful to other women.

Breast cancer alone kills some 458,000 people each year, according to the World Health Organization, mainly in low- and middle-income countries. It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.

I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.

Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.

Angelina Jolie is an actress and director.

Runi's two cents:  I never really cared for her because she was an adulterous and just overall too complicated and controversial however you couldn't deny her humanitarian work.  Anyway, aside from all that I'm focusing on her article.  I applaud her.  Why?

I applaud her because she's a famous actress and director and most importantly she's known for her amazing body and is a sex symbol.  Her story alone educated hundreds and thousands and most likely millions of people about the BRCA mutation.  I also don't feel as if her sexiness or hotness scale will decline either.  However, there's much more besides the hotness factor. Many women that either have mastectomy because of the mutation or from breast cancer can have challenges accepting their bodies, almost feeling mutilated.  Her coming out about this may help women and potentially spouses accept a woman's beauty, even if their breasts are not real.  The American culture is so fixated with beauty and looks that it's hard for a women to feel beautiful or whole sometimes, especially if they are bald, breastless and overweight from treatment.  (Obviously some women choose not to have reconstruction and hopefully they will find themselves beautiful too.  But this article is about reconstruction so that is my angle here.)  Applaud number 1.

Right now there is a patent on the BRCA mutation therefore tests are more expensive and may more many not be covered by insurance.  We also know that research is limited because only Myraid can do further testing.  The case at the supreme court is epic.  Jolie mentions that the test may not be affordable for all and that is a problem.  Applaud number 2.

She actually carries the BRCA mutation and I feel as if that is a very personal decision (just like having a mastectomy vs a lumpectomy for those that can choose.)  Yes, some of those that have BRCA mutation will never get breast or ovarian cancer.  I get that BUT when your chances of developing it is over 50% it is like flipping a coin.  I think it is hardest when someone has seen a loved one or loved ones go through a diagnoses, treatment and possibly death from cancer.  I had breast cancer at a young age.  First time around I choose a single mastectomy.  Paranoia and then an inconclusive BRCA1 conclusion made it an easy decision for me to have the other side removed.  It's my body and it's my decision.  Yes, I understand that there are always risks of complications with surgery and that there are future surgeries because of my implants.  However, it's MY body and I know how my crazy worry wart brain works.  I've also been through chemotherapy and that wasn't fun either.  I rather not have to go through that again.  It's her body so it's her choice.  Applaud number 3.

Finally she just educated people about the BRCA mutation.  People can do what they may with that information.  I hope they choose to get genetic counseling before getting the test but I've always been big on knowledge is power.  Those with high family history of breast and ovarian cancer can start of have conversations about this, possibly save lives.  If not awareness is key.  Applaud number 4.

Now, I've heard many criticisms.  I don't think an average healthy person with no family history should get tested or have preventive surgery.  Remember, she actually carries the mutation.    One criticism that I heard from a doctor is that her biological children will have that 50% of having it looming over their heads.  I told that doctor that she has enough money that she may have done gene selection in vitro.  We'll just never know unless Jolie tells us.  Some are saying she needs to have oopherectomy sooner than later.  Again, I feel this is a personal decision.  She's 37 and still young.  Ummm...I'm 36 and choosing to keep my ovaries.  Menopause comes with other issues too.  We know our risks.

So for whatever is it worth, my two cents.