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

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!!