Pink Ribbon

Symbolism, an artistic and poetic movement or style using symbolic images and indirect suggestion to express mystical ideas, emotions, and states of mind.

When I was in remission (shortly after my double mastectomy), I really wanted to show off my pride of being a breast cancer survivor.  Not only am I now a breast cancer survivor, but a BRCA+ warrior.  I had my heart set on a Sydney Evan Awareness Ribbon necklace.  It was perfect. Not overstated. Not understated.  A delicate, sweet symbolic representation of my breast cancer plight and new remission status.  And in real honesty, it was also a way for me to feel more comfortable about going out in public with my short hair.  I was always self conscious about how I looked in public wearing a head scarf during chemo, but when my hair started to grow, I was actually even more self conscious.  At least when I had a head scarf, it was obvious I was in treatment.  With very short hair, I wasn’t really sure what others would make of my appearance.  Donning a pink ribbon necklace, was a way for me to feel a tinge more comfortable as my hair growth journey began.  It provided an unspoken message and understanding to strangers that yes, I am a breast cancer survivor.

My sister and I discussed getting symbolic tattoos that represented our BRCA/cancer journey’s.  As I mentioned in earlier posts, she decided to get a preventative mastectomy after I was diagnosed.  She tested positive for BRCA1 mutation at 19.  After some thought, however, I decided not to pursue the tattoo, and for the first time in a year and a half, I took off my Awareness Ribbon necklace to put on something else.  Not that I am no longer proud of my cancer fight, or even letting go of that identity as a cancer survivor/BRCA+ woman, I just don’t need it to define the person I am today.  I can embrace the journey, the experience, the memories (good & bad), the courage, awareness, and the understanding of how precious life and our health is, within my own personal evolution.  I no longer feel the need to express it on a daily basis, even as a small representation in the form of a delicate necklace hanging on my chest.  Sure, I will definitely wear it again, but today, as I look at the person I have become, the pain and challenges I’ve faced, I can thankfully take it off with ease and allow myself to just be Alyssa; mother, wife, daughter, sister, friend, corporate executive, dog owner, music lover, singer, cancer survivor, BRCA1+.

We are all in different stages of our BRCA journeys.  I hope in sharing some of my thoughts, others can take comfort that even though their BRCA journey may have just begun, or perhaps somewhere stuck in the middle, there’s much more life to live afterwards.  It will always be a part of your life, but in eventuality, just a piece of your whole story.

xo ’til next time my fellow BRCA’nites/cancer sisters

Definition of a Woman

I’ve been thinking a lot lately about what defines the female body and what makes a woman feel like a woman.  I thought the hardest part of my BRCA journey would be losing both breasts, which I still struggle with to this day, but as my 39th birthday approaches, I’ve been thinking more and more about losing my ovaries at 40.  I didn’t think approaching this stage would create so much fear and anxiety, but unfortunately it has (on top of inching closer to the big 40!).

I recently bumped into an old H.S. friend that I haven’t seen in a very long time.  We chatted about the concept of time and how strange it is.  It’s quite perplexing how quickly 20+ years has passed since our H.S. graduation.  We’re now in our late 30’s with little ones at home – how did we get here so rapidly?!

For most women, childbearing years are over by early 40’s, but the delicate balance the reproductive system plays is a crucial and vital part of a healthy anatomy.  Ovaries are a huge role in helping to keep everything in check.  Is there life after natural menopause, yes of course. Some women struggle more than others and I know there is life after medically induced menopause, even at a younger age, but the thought of physically losing my ovaries now vs. allowing the process to happen naturally, freaks me out!

Unfortunately I don’t have much comparative analysis to go off of.  During chemotherapy, Zoladex shots were quite harsh on my system, which has fed into my fears of medically induced menopause.  I’ve been telling myself those side effects were worse because of the Zoladex itself and of course being in treatment, but I cannot help but fear an oophorectomy will induce similar side effects; horrible debilitating hot flashes, NO sexual libido, vaginal dryness, and more.

My mom had medically induced menopause at 50.  This was after her 2nd cancer diagnosis in 2001, and after learning about BRCA, ultimately testing to see if she carried the mutation.  After she tested positive for BRCA1, she had a double mastectomy and an oophorectomy, but didn’t have many negative side effects from the oophorectomy, just some minor hot flashes.  It was a relatively easy transition for her.  I am not sure if her age played a role.  She was 50 at the time.  My oophorectomy will be at 40.

A big part of my femininity and confidence was lost when I had my mastectomy.  In the weeks following the surgery, it was hard to face what I looked like in the mirror.  I’m sure my fellow breasties can relate.  Your body goes through a drastic transition.  Both my sister and I watched our anatomies change as our expanders filled over time and eventually got swapped out for regular implants.  It’s now been a year since my “swap” surgery, but I’m still not happy, at least not as happy as I was with my natural breasts.  I’m pretty sure my sister unfortunately feels the same.  At least with our breasts, more tweaking can be done, though through surgery, but once your ovaries are removed, that’s it.  That organ is no longer a part of your body’s reproductive system, which I think is a big part of what helps to define us as women.

So I’ve been trying to look at the silver lining of all this.  My family has been through so much loss with my cancer diagnosis, and of course my mom’s years ago, that I want to try and refrain my perspective of losing my ovaries.  Instead of looking at it as yet another loss, perhaps I can try to view it as a benefit… no more PMS for one!!!  Yeah, that’s a pretty huge benefit isn’t it ladies?  Who likes PMS??  And perhaps medically induced menopause can actually help hormonal fluctuations since PMS is no longer a factor?

I do intend on utilizing HRT (hormone replacement therapy) for the first 4 years post oophorectomy.  Research shows it is more beneficial to go this route at a younger age and can possibly help prevent future health problems.  I’ve touched on this in prior posts that early on-set menopause can create issues with osteoporosis, elder dementia, cardiovascular concerns, but my oncologist does not recommend HRT for more than 4 years.  At that point, the risks out way the benefits and can cause other potential problems, including higher risk of cancer.

For fellow BRCA’nites who’ve already had oophorectomies at a younger age, how has early on-set menopause affected you?  Was it what you expected, worse or better?  Did you try HRT?  Has it been helpful?  I urge you to please share with our community!!

Till next time…  Thx for reading!  🙂

Motherhood

Initially, I wanted to post before Mother’s Day, but couldn’t quite figure out exactly what I wanted to write.  Motherhood is wonderful in so many ways.  It has been an amazing experience to watch my son grow from a teeny tiny infant, to now toddler. His vocabulary skills develop more & more every week.  He’s growing like a weed and is so much more aware of his surroundings.  The world is like a magical oyster to him.  Everything is new and exciting, from post-thunderstorm rainbows, to spring rabbits hopping around neighborhood yards, to saying hi to strangers in a grocery store! It’s truly an amazing experience to watch him blossom.

Obviously motherhood comes with its challenges, but add BRCA mutation to the list, and those challenges reach new levels that many moms luckily do not have to struggle with.  I mentioned in an earlier blog post that 6 months after my son was born, I was diagnosed with stage 2 ductal carcinoma.  I was 36 years old. Luckily I have a phenomenal support system that really helped me through some extremely dark days. But as I reflect back now, there were many moments when my incapabilities to care for my son, deeply crushed me. I knew logically I shouldn’t feel guilty, that I was physically unable to do certain tasks, even just hold him, but I still harbor guilt and resentment to this day.

In some ways, the age of my son when I was going through treatment & surgery was a blessing. He will likely have no memories of that harrowing time, but it all connects back to challenges that a lot of BRCA moms tackle; like wanting to breastfeed, difficulty caring for children while recovering from mastectomy, possibly passing the mutation down to their children (50/50 chance), childbearing pressure due to increased ovarian cancer risk, and the list goes on!

Mothers are strong, hardworking and selfless no matter what, but I got to give an extra high five to BRCA moms! The challenges we face are quite extraordinary when you really think about it! Happy Belated Mother’s Day! 💐🌷🌹

Playing God?

Years ago when I was still in my 20’s, not long after I found out I carried the BRCA1 mutation, and after I enrolled in a research study through the NIH (National Institute of Health), a researcher involved with a physiological program through a University (I don’t remember which now), interviewed me over the phone.  She was gathering data from different BRCA+ women, discussing their psychological and emotional states after finding out they were mutation carriers, as well as asking other questions regarding future health decisions.  I specifically remember her asking me about genetic embryonic screening, if it would be something I would consider, eliminating the 50/50 chance of passing the mutation down to my children.  At the time, it was a relatively newer advancement and most likely not covered by insurance (though I did not look into it at that time), but the question itself has stayed with me for years.

When my husband and I were trying to conceive our first child (he’s a little over 2 now), it took us a lot longer than we anticipated.  I actually miscarried fairly early on, only about 2 months after initially trying, but then it took over a year to conceive again (I was 35).  Luckily that time, I carried a healthy baby boy to full term.  We were actually in the process of investigating IVF.  We already met with a fertility Dr multiple times and started the process with blood work and screenings to test for other possible genetic issues.   It was literally the month before we were going to start the IVF process that we finally conceived.  I remember calling the Dr’s office to inform them I was in fact pregnant and the receptionist said it actually happens more often than you think.  Perhaps women finally relax knowing they’re going to take steps towards IVF, which allows their bodies to simply create a more inviting atmosphere for conception?

Fast forward to today and we’re investigating IVF once again, but this time for very different reasons.  I mentioned in my previous blog post, that the best measure against ovarian cancer, is an oophorectomy.  As of late, some women have actually been pursuing these at fairly young ages, 20’s and early 30’s.  They are freezing their eggs beforehand, eliminating the need for ovaries when it comes to conception because you can actually carry a perfectly healthy baby to term through the IVF process without ovaries. They will still have their uterus and cervix. Amazing right?!

My Oncologist asked if I considered freezing my eggs prior to chemo, but that was more to help protect them against chemo.  Zoladex shots were proven to help, but it was not a guarantee.  There was so much going on at the time of my cancer diagnosis that the thought of freezing my eggs was way too overwhelming.  But luckily, the Zoladex shots did work and my egg quality is still great (refer to my last post “The Story of the Eggs”).

So now the decision of IVF for us, comes down to timing.  I turn 39 this August, which leaves about 7- 8 months of wiggle room, if that, since my ovaries will need to be removed by 40.  So why not take the IVF route?  Fertility Dr said IVF has 80% chance of conception, you can choose the healthiest embryo(s) to implant, you can possibly choose a boy or girl, and screen for the BRCA mutation (if insurance covers the cost since I am a cancer survivor), on top of other genetic abnormalities.  Hmmmm…. I thought to myself as I sat across my Dr at a circular marble table in front of a faux-fireplace (our Dr likes to have a relaxing, conversational atmosphere).

There were a lot of thoughts flowing through my mind in that “Hmmmm….”!  It’s a bit out of this world, futuristic to think one could possibly choose out of a lot of embryos.  IVF has been occurring for decades now, but being in the driver’s seat is a whole other story. You’re the one making these decisions that directly impacts your family’s future.  So I found myself asking if it’s normal to feel hesitation and ambivalence about this approach?  Is it normal to feel a bit guilty about “playing god”, so to speak?  I mean in a sense you are playing god on multiple levels; possibly choosing the sex of your baby, separating healthier embryos, and so forth.

In thinking it through since my last appointment (last week), I’ve found a bit of comfort on both sides of the fence.  Conceiving naturally is the easier approach, in that you don’t have to endure the IVF process, and provides a sense of contentment that nature did its job, our 2nd baby was “meant to be”.   IVF, however, also provides a sense of comfort, in that embryo viability is strong and you possibly know 100% it does not carry the BRCA mutation, which in its own can be extremely comforting for many BRCA carriers who have struggled with either prophylactic procedures and/or cancer treatment.

Of course there are no guarantees in life, even if you do implant a healthy, non-BRCA embryo.  And if you are a BRCA mutation carrier with family history of ovarian cancer, deciding to freeze your eggs and pursue an opphorectomy at a young age, IVF is your only choice to conceive, which is certainly not an easy path to take!

No matter what decision one makes in their BRCA journey, it will always have a mix of positives and negatives.  There is no crystal ball, no clear path in life.  We make decisions to the best of our abilities.  Sometimes those decisions work out and sometimes they don’t.  Life can be challenging enough, so let’s be kind BRCA sisters.  Let’s be kind to ourselves and allow the process to proceed with whatever our best intentions are.

I will keep you posted on our continued journey and welcome others to please share their own!!

The Story of the Eggs

During chemotherapy, I received Zoladex shots once a month and quickly learned what it possibly feels like to go through menopause, i.e. not fun! Zoladex shuts down your reproductive system. Its purpose for me was to help protect my ovaries and eggs from the harsh cocktail of chemo poisons I was receiving on a weekly basis. The most common type of cancer associated with BRCA1 mutation carriers is triple negative. Triple negative means the cancer tumor has no hormone receptors. This is the type of cancer both my Mom and I had, so shutting down my ovaries to help protect them was its sole purpose. Other types of breast cancer tumors with hormone receptors, Zoladex is used as a form of treatment to shut down hormone communication within the body in order to inhibit reproductive functionality, and prevent further tumor growth.

Unfortunately shutting down my reproductive system invited many unwanted menopausal systems such as major hot flashes and vaginal dryness. I never knew how debilitating a hot flash could be until I was on Zoladex. I’m sure many of my BRCA sisters who have gone through this can relate to the wave of anxiety that would hit right before a hot flash took effect. And once you knew it was coming, there was no way to stop it until it reached its peak and started to subside. My entire face, neck and chest would turn bright red. My skin felt like it was on fire from the inside out! If I was home, I would rush to the freezer and literally stick my head in the freezer door until it passed. And these hot flashes would hit at any time, day or night, with no rhyme or reason. They would wake me in the middle of the night. I’d throw the covers off and lift my shirt until the internal blaze passed! I know it’s not a pretty picture, but for those who’ve had to take Zoladex like myself, it’s nice to know that enduring months of uncomfortable red, sweaty hot flashes, was not an exercise of futility! These shots might’ve worked!

I recently had some blood work done that checks hormone levels at a specific time within the menstrual cycle. These levels indicate egg viability, and to my pleasant surprise, my numbers were strong, which means there’s a very good chance that Zoladex did in fact help protect my ovaries and eggs against the wrath of chemotherapy!! 🙌🏻

It is becoming more & more common for BRCA mutation carriers to freeze their eggs as women decide to take further prophylactic measures to ensure they don’t get ovarian cancer, which is significantly harder to detect vs. breast cancer. Screening techniques for breast cancer are more advanced. The only screening technique for ovarian cancer is a transvaginal ultrasound. I’ve been getting those since I found out I was a mutation carrier at 25. I’m sure MRI’s are used as well, but ultrasounds are the most common. They’re not, however, a great screening tool for early detection and ovarian cancer typically does not show many early symptoms of tumor growth, which makes it a dangerous type of cancer to have.

There’s also a blood test that may help indicate ovarian cancer, called a CA 125, but it is not as accurate as one would like CA 125 – Mayo Clinic.

Really, the best measure against preventing ovarian cancer is removing your ovaries. For many BRCA mutation carriers, recommended age is 40, though some studies suggest women with very high risk, BRCA mutation carriers with a strong family history of ovarian cancer, should consider oophorectomies by 35. In my case, being that there’s no family history of ovarian cancer besides being a BRCA1 mutation carrier, my Oncologist recommends oophorectomy by 40. I am currently 38.

Thankfully we have a beautiful healthy boy, now a little over 2 yrs old. We are considering adding to our family. I turn 39 this August, so when you think about how long it may take to conceive, plus the 9 months you’re pregnant, 40 is really just around the corner! My husband & I don’t want to risk anything being that I am already a breast cancer survivor. Once you have cancer, your risk for any type of cancer increases. We decided to meet with a fertility Dr to discuss our options. We were considering artificial insemination. After speaking with the Dr, we’re now considering IVF, which has the highest % of conception, 80%, which is ironically the same chance of breast cancer with a BRCA1 mutation. With IVF, we would also have the opportunity to screen embryos for the BRCA mutation. Considering embryonic genetic screening is fairly expensive, it’s possible insurance may cover it being that I am a cancer survivor (something to look into fellow survivors).

So now some decisions need to be made. Whether or not we have another child, my ovaries need to go by 40. Which leads me to the next topic, my BRCA sisters, regarding medically induced menopause at a younger age. There are multiple health factors to consider when dealing with early menopause. Topics such as hormone replacement therapy, osteoporosis, heart disease and even dementia, need to be discussed, as all are increased risk factors when deciding to pursue an oophorectomy at a younger age.

So much more to discuss! Until next time my BRCA sisters… As always, please feel free to share!!!

Your Significant Other

Today is my 10 year wedding anniversary.  My husband and I started dating not long after my genetic test results came in.  We both remember quite distinctly, that I shared very early on what it meant to carry a BRCA mutation.  BRCA was still relatively unknown in 2005 when we met, so I had to explain in detail how it would effect many important future decisions regarding my health and family.  Apparently I was very clear in stating that if he’s not along for the ride, then he should get out while he can.  I didn’t really say it in those words of course.  I’m sure my approach was a bit more soft, but it was very fresh in my mind.  The test results were real and solidified years of fear on one piece of paper that my cancer risk was very high.  I felt it was extremely important to explain the seriousness of what having this mutation meant.  If he couldn’t handle it at that point, then he certainly wouldn’t be able to handle it when I got a double mastectomy, or god forbid, cancer.

I was very lucky to find him.  Not only was he incredibly supportive early on, but he’s stuck with me through it all!  From day 1, BRCA has been a large part of our lives.  I can imagine that it has been quite a roller coaster for him!  From initially learning what BRCA meant, to supporting me through an NIH research study (I’ll get more into that in future posts), to understanding “scananxiety” (as Nalie Agustin puts it), to being diagnosed with stage 2 ductal carcinoma 6 months after having our first son, then cancer treatment and mastectomy surgeries…. Did I list enough here ladies?!!!

I still struggle to this day with various elements directly related to my BRCA journey.  Screenings can feel intrusive, overwhelming, robotic.  How do you undress in front of doctors, open yourself up to poking and prodding, but then allow your body to feel loved and romanticized by your partner?  Our breasts are “ground zero” in the fight or race against the BRCA mutation.  Can you allow your partner to lovingly embrace that part of your body when there’s so many complex emotions surrounding them?  These were some of my challenges and after mastectomy surgery, any physical sensation, sexual pleasure connected to that part of my body is gone.

For many years, I separated myself from that part of my body.  It was the only way I knew how to cope with all the doctor visits and complexity of emotions surrounding them.  It has been over a year now since my mastectomy surgery, and almost a year since my second reconstruction, or as we “Breasties” say, swap surgery, and I have yet to truly connect with my new breasts.  Someone can literally stab me in the chest and I would not feel a thing.  Mirroring scars on each side fade over time, but they’re still scars.  Their shape and feel will never be as they once were no matter how great the plastic surgeon.  To have a partner who understands and fully provides unyielding love & support through all of this craziness is simply priceless!!

For those going through preventative mastectomies at a young age, perhaps you are nervous about how this will impact future relationships, disclosing the path you have chosen and the physical changes made to your body?  My sister, who also tested positive for BRCA1 at 19, decided to pursue a preventative mastectomy at 30 after I was diagnosed with stage 2 ductal carcinoma at 36.  She was engaged at the time and like me, found a great deal of support and understanding from her then future husband.  But I understand that not all of us are as fortunate.  For those who are engaged or married, have your significant others been understanding of your BRCA journeys?  I encourage you to share any advice and helpful tips/guidance… and we have not even touched the subject of our ovaries yet!!

More to come my fellow BRCA’nites…

IMG_0266

Mastectomy Nerves

The completely overwhelming feeling of knowing your surgery date is approaching is hard to explain to others who’ve never experienced such anguish.  My BRCA sisters can probably relate to the fact that it’s a very different type of anxiety.  For some it’s elective surgery, preventative measures against the possibility of developing breast cancer.  For others like myself, it’s the next necessary step in the fight against cancer, to ensure it hopefully never returns.  Either way, the thought process one has to go through to prepare for the fact that they will lose both their breasts, is extremely scary, and even with newer nipple sparing procedures, your breasts will not be the same as they were.

When I found out I too carry the BRCA1 mutation like my Mom, at 25 years old, I was in no place to mentally handle such a challenge as a prophylactic mastectomy.  I was single, in my dating prime, and building my marketing career.  Perhaps if I wanted a physical change to adjust how I looked, it may have been an easier decision to make, but I was happy with my physique.  My Mom and I both thought at the time, that diligent surveillance was the right approach.  She was 39 when first diagnosed with stage 2 ductal carcinoma.  At 25, the looming fear of possibly getting breast cancer, even knowing I had the BRCA1 mutation, wasn’t eminent.  My thinking was, god forbid if they find something, it will be early enough to treat easily and at that point, I would get a mastectomy.  In 2005, it was not nearly as common as it is now for young women in their early 20’s to get preventative mastectomies.  I even enrolled in a research study through the NIH and none of the Oncologists in that study discussed prophylactic measures with me.

So how does one handle anxiety as their mastectomy date approaches?  Some of my helpful tips below and please feel free to share your own:

  1. Make sure you have a great support system in place and don’t be shy to share your fears and needs with them – family, close friends, great doctors, etc.
  2. Ask, ask, ask…  The more questions you ask your surgeons the better.  Knowledge can be comforting.  Most breast surgeons have many years of practice with patients in all types of medical situations and can help ease your fears.
  3. Research products that can help make your recovery a little easier such as specialty support tanks designed to hold drainage bulbs out of sight, specialty pillows designed to help support the areas of your upper body for more comfort, etc.
  4. Don’t be fearful to take meds and painkillers.  Valium helped me a great deal! I found sleep to be my best friend during recovery.  The less you move around, particularly within the first few weeks of recovery, the better.
  5. The morning after surgery can be the most difficult.  It’s hard to get a good night’s sleep in a hospital, let alone after major surgery.  I was nauseous from being under anesthesia for many hours as well.  It will be greatly beneficial to make sure you have a close relative or friend there for you when you wake.
  6. Scar reducing/healing products are very helpful.  I used ScarAway silicone strips.  They’re reusable and easy to take on and off.  Some scars are more concealed then others depending on where incisions have to be made.  Mine are quite visible on the sides of each breast, so I wanted a product to reduce inflammation and aid in healing as quickly as possible.

I urge others to comment and share what helped them during mastectomy surgery and aided healing afterwards.

xo fellow BRCA-nites