Lordy Lordy I’m Turning 40!

Hello fellow BRCA’nites and Breasties!  It’s been awhile since I’ve posted on my blog.  There’s a lot to catch you all up on, so here we go!

I had my Salpingo bi-lateral oophorectomy in early June and it was not fun.  Not that I expected it to be, but being that it was laparoscopic, I was not anticipating the type of recovery that I ended up having.  And the image of both my ovaries and Fallopian tubes on a petri dish for dissection, was quite disheartening.  Plus, and I have written about this in older posts, my husband & I were not able to conceive a second child prior to surgery.  So now it’s official, I will never be able to have another biological child with my own egg, and I am officially in surgically induced menopause.  Isn’t BRCA fun ladies?!

The actual procedure did not take long, about an hour to an hour & a half.  The main issue with recovery was all the air that was pumped into my abdomen to help guide the surgeon.  Those air pockets traveled throughout my body, hiding in discrete areas all the way up to my shoulders.  I read that shoulder pain is a common side effect of this recovery, but boy, when they say shoulder pain, they mean unbearable, unmovable, virtually tied to your bed pain from your groin all the way up to your shoulders and upper back.  It was excruciating.

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My doctor did prescribe Oxycodone for pain management, but I hate that stuff.  They gave me two at the hospital and made me feel completely out of it.  I decided I did not want to take anymore and stuck with Tylenol and Advil.  They were definitely not as effective, but I preferred to absorb the pain vs. take another Oxy.

The first couple of days were really rough.  My energy was low and I realized I had to stay relatively immobile in order to avoid triggering air bubble pain.  As each day passed, the pain became a bit more tolerable, but it took a good week to feel like myself again.

Luckily my surgeon prescribed hormone patches beforehand, so I had one ready to go after I got home from the hospital.  And let me tell you, it was necessary.  About an hour or so after surgery, I started having terrible hot flashes.  I was so sweaty that the recovery room nurse gave me some cold packs to press on my forehead and neck.  Once the hormone patch went on at home, my hot flashes stopped.  They work!  I realize that not everyone is a candidate for hormone replacement. Since my cancer was triple negative, the hormone patch is safe for me to use, at least for the first four years (according to my Onco).  After that, it can become a risk in other ways.  So I guess once I’m 44, I will have to stop using them, which is unfortunate.

There are health risks later in life with early induced menopause (onset dementia, osteoporosis, heart disease).  Average age of natural menopause is 50/51, so 44 is still quite a bit young.  I hope that science moves a bit quicker on this, so there may be other options for me down the road.

The patch itself is pretty inconspicuous.  It’s about the size and shape of an egg (the irony is not lost on me here!), and translucent.

patch picI thought it would look more like a nicotine patch, but its translucency is different.  I don’t mind it.  Each patch stays on for seven days until I switch to a new one and swap sides (so the skin underneath gets a break).  On the seventh day, I can tell that it’s getting time for a new one.  I start to feel more mopey and sometimes get hot flashes overnight.  I will be asking my Dr about this to see if there’s anything else I can do to prevent these side effects.

I really feel for fellow Breasties who have to stay on reproductive suppressants, which basically keep them in medically induced menopause to help prevent cancer if they have/had hormone receptive tumors.  It’s not fun to live with these side effects.  I remember very well what it was like to experience these during chemo while on Zoladex.

The good news is, I have started to become more involved with a wonderful non-profit called The Breasties.  Comprised of young women dealing with breast and reproductive cancers, as well as those with high risk, and caregivers, it has become a source of solace for me, filling a void that I didn’t realize I had until my first Breasties meeting in July.  Such brave, powerful, beautiful women, all struggling with similar issues and challenging circumstances, many of whom are still fighting cancer. The Breastie community calls them, thrivers.

With my 40th birthday around the corner (8/29), I have been thinking lately about my 30th birthday.  I had this terrible dread in the pit of my stomach, when I turned 30.  It was for many reasons.  My mom was first diagnosed with breast cancer at the age of 39.  I knew I also carried the BRCA1 mutation and decisions had to be made.  I wasn’t ready to start trying for children.  We didn’t start actively trying until I was 33.  I miscarried early on and then it took almost two years to conceive successfully.  I wanted to breastfeed and thought I had time to get a prophylactic mastectomy afterwards. Though I felt this type of “loom & doom” hanging over me, that the BRCA clock was ticking.  My breast surgeon would ask, when are we doing the mastectomy, and my answer was always, I’m not ready yet.  Perhaps I was too scared to just do it.  Perhaps I was in a bit of denial.  Perhaps I didn’t fully comprehend the severity of BRCA status.  But perhaps, I did understand all of these things and made a decision based on what I wanted at the time anyway.  Whatever it was, and no matter how difficult these last few years have been with four surgeries, five months of chemo, and surgically induced menopause, I am trying to move into the next decade of my life with a new frame of mind.  Perhaps with all the heavy health scares behind me for now, I can possibly do just that!  So 40 here we go!  Let’s do this!

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-‘Til next time my fellow BRCA’nites and Breasties

Give Me That Patch!

I met with my OB last month.  Last time I saw him, about a year ago, my husband and I went in together to discuss fertility options knowing we had a certain amount of time to try for a second child before preparing for my oophorectomy.  In my last post, I discussed why we decided not to pursue fertility treatment and just try naturally.  We did so for 9 months, and unfortunately, things did not work out.  Tears well up in my eyes as I write this because I am still grieving the loss of not be able to conceive a 2nd, and my surgery date has officially been scheduled for June 11th.  I thought about freezing my eggs prior to surgery as a last option at potentially having a 2nd child even without ovaries, but being that my husband and I are both turning 40 this year, and luckily have a beautiful healthy 3 year old boy, decided to close the baby chapter.

Related imageSo now I’m in process of trying to wrap my head around what’s coming down the pike.  I’ve tried to steer clear from reading too much online.  It’s too overwhelming knowing all possible side effects of medically induced menopause at a young age.  Overall however, from what I’ve read and heard from both my physicians, OB and Oncologist, women under the age of 45 who do not have hormonal risk of cancer or recurrence, should take HRT (hormone replacement therapy), for a max of 4 years (after 4 years it becomes more of a cancer risk).  Some women take anti-depressants to assist with mood swings (funny how mood swings is a possible side effect of menopause when PMS no longer exists!).  But I asked my OB straight out, what in your experience has been more effective at treating possible side effects of this surgery? He said HRT.  So, that’s the route I have decided to take.  I told him to give me a patch as soon as my surgery is done!

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In prior posts, I’ve discussed the horrible side effects of Zoladex.  I was on this drug during chemo as a way to protect my ovaries by shutting down my reproductive system.  The hot flashes were simply debilitating.  I had no libido and my lower region was literally the Sahara Desert (I have to find some humor in all this or I’ll just go bat shit crazy!). haha..  When others hear “hot flashes”, they may think  “Oh you get sweaty.”, or “You need to fan yourself.”…  NOPE!  These hot flashes start with an overall feeling of dread and anxiety, like something really terrible is about to happen.  That’s how I knew a hot flash was coming on.  That dreaded feeling was followed by intense heat, like your skin is burning from the inside out, growing from your groin, up through your chest, into your neck and face, until you look like an overcooked tomato!  I would run to the freezer and stick my head in just to get some type of relief.  They wake you in the middle of the night, drenched in sweat, pushing anything on top of you off.  So I say, not going to risk dealing with any of that again – NO thank you!!  Give me that patch!

I would really like to hear from other BRCA sisters who already had this surgery.  What did you find beneficial?  Did you have immediate menopausal side effects?  Any words of advice??

Being BRCA is tough shit ladies and it really does truly suck, but we are warriors and stand united in the understanding that we got each other’s backs.  No one else can really identify what it’s like living with this mutation as a woman.

XO – Look forward to hearing from you!

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It’s almost 2019…

Those who carry the BRCA mutation most likely identify with what it feels like to be in a pressure cooker.  TICK TOCK TICK TOCK, time to get your ovaries out!  You’ve probably had your mastectomy already, so let’s put an end to what being BRCA is all about.

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In less than a year I turn 40.  BRCA carriers know exactly what that means.  Some in the medical community even recommend BRCA carriers get their ovaries removed by 35.  But what if you’re not done having children?  Has your time run out?

I’ve spoken in prior posts about the struggle young women face when deciding to have their ovaries removed at a fairly young age.  Some women are as young as early to mid-twenties based on their family/cancer history.  They’ve most likely frozen their eggs prior to any treatment or surgery (an unfortunate necessity filled with many mixed emotions I’m sure). It must be very tough knowing the only way you’ll possibly conceive is through IVF, and there’s really no control over the amount of viable eggs they’ll be able to retrieve.

I look at all these young, strong, brave women who face the unfortunate fate of having to take a certain path and feel extremely lucky to have conceived my son naturally.  Cancer and the BRCA gene has taken away a lot from my family and I, but we have my son who is an amazing blessing, especially given the complexity of the last few years.

We have been trying to conceive naturally again for the last 9 months with no luck.  Of course it’s heartbreaking and another loss on top of everything else we’ve endured, but now that 2018 is coming to an end, I’ve struggled with the fact that it’s probably time to let go and focus on our future.  Our future is most likely a family of 3, which is more than what many others have.  I can drive myself crazy asking “Why?” and “What if?”.  There’s really no point in doing so because we’ll never know why we haven’t been able to conceive naturally again and decisions were made not to pursue IVF for various reasons.

So after much heartache and struggle, I’ve come to the conclusion that I need to be “ok” with this and let go, be thankful for what we have, and know that while the pressure of being BRCA with a looming oophorectomy totally sucks and certainly not ideal for baby making, I am more fortunate than many others.  I am cancer free and have a beautiful, healthy almost 3 year old son.

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This chapter is coming to a close and I am ok with moving onto the next.  Til next time my fellow BRCA warriors.

Post Chemo Hair Problems!

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Hello ladies and Happy Fall!  I usually like Fall weather changes. The air becomes crisp, cool and less humid. I am able to blow dry my hair without worrying about fly-aways and frizz.  In the summer, I typically end up curling my hair due to humidity (which on Long Island we have quite a lot of!). I wasn’t able to curl my hair until recently, the last 6 months or so, since my hair was really too short.  I like it curly. The curls give my hair more volume, or at least the appearance of more volume.

Unfortunately as my hair grows (and it’s almost all 1 length now – a short bob!), I’ve noticed it’s just not as thick as it used to be prior to chemo.  It’s about 30% thinner, which to me is fairly significant.  Very frustrating since it’s been almost 2 years since my last chemo treatment (Dec 12, 2016).  Some cancer survivors even say their hair grows in thicker after treatment.  That’s definitely not the case for me.

So I’ve been trying to figure out what do to and wondering if any of you, fellow cancer survivors/thrivers have dealt with similar issues?  I started taking hair vitamins called HairAnew . I found them on Amazon.  It has over 5K online reviews, mostly very positive.  It’s been 1 month and 20 days since I started taking them.  I am honestly not sure if I see a difference yet, but could be with something like this, more time is needed?

I recently started trying this shampoo as well, Biotin Shampoo .  I read vitamins help nourish hair and promote growth from the inside, while the shampoo does the same from the outside; so best to do both at the same time!  Since I just started the shampoo, it’s obviously way too early to see any results, but I am posting a before pic here and will post another one again in 30 days.

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As you can see, I clearly have a larger hair line spot, or bald spot, if you will.  I hate using that word, bald!!  Also, because my hair is thinner, it’s more wispy and frizzy, even on non-humid days because the weight of my hair is lighter now.

I also looked into using Rogaine, but it seems it’s the type of product you have to keep using and if you stop, its effects will stop as well. Basically your hair will start falling out again.  If any of you have tried this product, has that been the case for you?

I must admit, I am very self-conscious and upset about it.  I think about it every day.  I stress about it every day.  I even spoke w/ a co-worker about hair extensions to help thicken it up, but not sure if I want to deal with monthly maintenance.  She said you really need to get the extensions tuned-up every 4-5 weeks because they grow out. With a toddler at home and working full-time, I am not sure if I can commit to that.

Any other suggestions or ideas/thoughts here ladies that worked for you…??  I am willing to try almost anything!

xoxo

39…

Tomorrow is my 39th birthday and I’ve been pondering the question, what does it truly mean to turn 39 as a cancer survivor/BRCA+ woman?  For a lot of women, I would imagine, inching closer to 40 is tough, though many say age is just a number and still quite young in the scheme of things (everything is relative).  Since turning 30 though, birthdays had a different meaning for me.  My mom was first diagnosed with breast cancer at 39.  I was very aware that entering my 30’s, I was growing closer to the age of my mom’s first diagnosis.  I was also still confused about whether I wanted to start a family.  I knew decisions had to be made, especially with being a BRCA+ woman.  I always planned on having a mastectomy.  I was waiting to see if we were going to have children first. I wanted to breastfeed if we did and thought I’d tackle mastectomy afterwards.  Obviously the powers that be, had different plans for me.

I am trying to enter 39 with no regrets, but it’s honestly difficult to do.  There’s part of me that wishes I started trying for children sooner and of course that I had a prophylactic mastectomy.  My husband and I started trying around the time I was 33.  Little did we know that I wouldn’t conceive full-term until I was 35, having our son Abraham at 36, later to be diagnosed with stage 2 breast cancer.

Fast forward to today and that biological clock is ticking louder and faster than ever before!  I’ve discussed in prior posts that my ovaries will need to be removed by 40.  It’s a standard guideline the medical community goes by for BRCA+ woman.  If ovarian cancer ran in my family, I would’ve most likely had them out already, but being that it doesn’t, my oncologist recommends 40.  She recently told me at a check-up appointment that it’s just a guideline and even age 41 would be okay, but I told her after all that we’ve been through with chemo and surgery, I just don’t want to risk anything. So I am making sure they are out before I turn 40.  Backtrack pregnancy 9 months out, that leaves about another 4 months of trying till the end of the year for baby number 2.  We did look into IVF but decided against it.  Again after all we have been through, and also having a beautiful healthy baby boy, trying naturally seems the better route for us. Leaving it up to fate I suppose!

Frustratingly, every month that goes by I am not pregnant, I get more nervous if we will be able to conceive again.  But at this point, I am forced to stick to our plan of trying till the end of the year due to my BRCA status.  What an unfortunate set of circumstances.  So much pressure on top of wondering if my body is simply capable of conceiving again after chemo.  Luckily as I mentioned in earlier posts, blood work showed my chances of conceiving are fair given my age and past medical treatment, but it’s like they say, no one has a crystal ball!  It’s incredibly challenging.  I am trying to stay positive, holding out hope there will be another baby on the horizon for us!

On a happier note, turning 39 after beating cancer is a good thing right?!  I mean every year that goes by cancer free is a good one!  I am slowly making my way to that 5-year mark.  Two years ago, on what was my 37th birthday, I was at an infusion center getting chemo.  It was a very difficult day and brings tears to my eyes just thinking about it.  We had a 6 month old baby at home.  It was my 3rd round of AC (the red devil and worst part of my chemo regiment).  I had one more round of AC to go, followed by another 12 rounds of taxol and 4 rounds of carboplatin.  Wow!!  What a fucking tough fight that was!  Turning 37 was not fun and quite depressing.  My husband tried to cheer me up and bought a slew of lotto scratch offs to help occupy the infusion time.  Unfortunately we didn’t win much, but it certainly helped to keep my mind off the fact that I was getting chemo on my 37th birthday.

Amazing how that was 2 years ago already!  Today I am healthy, happy, head full of hair, with a beautiful 2.5 year old boy.  We are hopeful, trying for another baby before my BRCA chapter comes to a close with an oophorectomy.

Here’s to my last year in the 30’s!  Perhaps 40’s will be my best decade yet?!  What has been your best decade so far BRCA sisters?

xo

Once Cancer is Found…

“It’s like an exclusive club that no one wants to belong to.”, a friend once told me early on when I was dealing with the emotional aftermath of mastectomy surgery and chemo treatment.  That statement still rings very true to this day.  For any cancer survivor, fighter, or even previvor, we connect on a different level, a level that those who have not been diagnosed with cancer or a hereditary gene mutation can truly understand.  Would we honestly prefer not to understand what it’s like to face cancer or the likelihood of cancer, absolutely, but for those of us who are members of this “exclusive club”, we are deeply bonded.

Since sharing my story through social media, I’ve been able to connect with other survivors, fighters, and previvors, which whom I’ve never actually met.  No matter the person, place or correspondence, I feel deeply touched by their plights.  Many are still fighting daily (and may never obtain remission status).  Some are in recovery phase, starting to embrace and reflect the challenges they’ve faced.  Some are just learning of their BRCA or cancer status, awaiting mastectomies, oophorectomies, and possible treatment.  All of these courageous women and I share more than just a logical understanding of what it means to face life threatening illness. There’s a kinship, a type of spiritual connection.  At least from my side, I feel there’s an unspoken understanding each one of us hold that doesn’t need clarification among our community, one that truly bonds us for life.

There’s definitely been a sense of heaviness or a hovering cloud that follows me after diagnosis.  Truth is, once you’ve had cancer, your life will simply never be the same.  My cancer was found relatively early and chances of survival are high, but like for many others, the reality of being sick hit me hard.  There’s always that voice in the back of my mind, reminding me that I had cancer, and even know my chances of life-long remission are positive, there are no guarantees in life.

When I read stories of other fighters or survivors that are still struggling, I try to engage them as best I can, to let them know we are a team of supporters that are really the only ones to truly understand what we’ve been through and what we’re going through.  Walk a mile in my shoes, as they say.  There’s no greater power than walking in the shoes of a cancer fighter/survivor.  To feel their prowess, courage, frustration, bravery, anxiety, fear, sadness, love, and empathy, it can be overwhelming.  They/we do it every damn day.

I was saddened to hear about Sarah Haddad, a young 30 year old woman who very recently lost her fight against stage 4 MBC (metastatic breast cancer).  I never knew her. I read her story online, shared by another MBC fighter, Nalie Agustin, and did what little I could to help support her and her family seeking alternative treatment.  Tragically she never got that far. The cancer spread to other parts of her body very quickly.  The only solace we, being members of the breast cancer community can hold onto, is the fact that she’s no longer suffering.  But what can her story tell us about humanity, the preciousness of life, the deep and dark burden cancer fighters and survivors bare as they know that once again there are no guarantees in life.  It can be extremely harrowing and scary.

I try to embrace this day, today, feeling encouraged by what I’ve overcome, and what little I can possibly offer to others who are in different phases of their cancer or BRCA journey.  Tomorrow is always a new day.  Yes, things can change in an instant, but those changes can be positive too, and when positive changes occur, it can slowly pull us away from the darker burden we carry, the heaviness we can sometimes feel all too often, transporting us into brighter, luminous light.

I am really trying to stay in that light.  It’s not easy as you all know, especially when hearing stories like Sarah’s, but we have the prowess and courage within us that many simply do not have because we belong to that “exclusive club”.

Till next time my fellow BRCA’nites, cancer soldiers xo

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