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.