Mirror Mirror on the wall, could BRCA be connected to it all?!

For nearly 2 years now my family and I have been trying to keep a 2nd primary, rare brain tumor at bay. But between countless rounds of brain radiation, surgeries and chemo, my rare brain cancer, a Rela-fusion Ependymoma, has managed to evade all.

Last July, after my 2nd resection, the tumor starting showing up in scans within a month of surgery. Post Cyberknife radiation treatment did zilch to stop it nor prevent other lesions from growing as well.

Fast forward to February 2022 and what would be my 3rd craniotomy resection (my 1st at Sloan Kettering, with an extremely talented surgeon that managed to remove all lesions)! However, after every resection, these tumors tend to grow back quickly, so timing of post-surgical treatment is crucial.

I did my homework. My Sloan team did too. And actually, the notorious Lisa De’Angelis @ Sloan, Lisa M. DeAngelis was the first to mention trying a PARP Inhibitor. Technically PARP’s have nothing to do with my type of brain tumor, but the caveat is my germ-line BRCA1 mutation, passed down from my Mom’s Grandmother to my Grandmother, to my Mom and to both my sister and I; hence germ-line. It is in every cell of our bodies. Can/could this be fueling my brain ependymoma? My Sloan team thinks it’s definitely a possibility. The head of Neuro Oncology research at the NIH is also in agreement to try the PARP.

BRCA related cancers are known to be aggressive. Both my mom and I are triple negative breast cancer (tnbc) survivors. My Rela-fusion ependymoma is definitely on the aggressive side too, leaving little to no room for PFS (progression free survival) in-between treatment and surgeries.

PARP Inhibitors interfere with cell DNA repair, preventing cancer cells from replicating or repairing themselves in order to grow/spread. This has recently become a routine treatment plan for BRCA breast and ovarian patients post chemo and surgery. One can be on a PARP Inhibitor for up to 2 years. This was not part of my treatment plan since my tnbc treatment ended over 5 years ago. PARP’s were non-existent or still being studied.

If somehow BRCA could be fueling my Ependymoma, and the PARP works, it could be a game changer for so so many!!

Since Ependymomas are more of a pediatric cancer, they’re not testing kids for BRCA. At least I don’t believe they are. And while BRCA + women screen early for breast & ovarian cancers, as well as preventative mastectomies and oophorectomies, then perhaps early brain MRI’s might also become protocol.

I start treatment soon. I’m still healing from my 3rd craniotomy, but would love nothing more then to share with you all if the PARP works!!!

Til next post Thrivers 💗

Advertisement

Dear Thriver Moms,

Our son, my only child, turns 6 this Saturday. I wish I could say the last 6 years have been easy, but they have been the hardest 6 years of my life. Not because of the beautiful blessing in having a son, but the unfortunate situation in having to manage cancer treatment, surgery, and other treatment side effects, which prevented us from conceiving another child; while raising our son.

There’s no doubt that cancer has stripped us of time. Time that could’ve been spent with our children vs. chemo, radiation or surgical recovery.

Cancer has taken far too much. It has taken far too much from all of us. And I’m incredibly angry and hurt about that, especially after being diagnosed with incurable brain cancer at the end of 2020. And many Thriver mom‘s fight for years and years and years.

But I would be remiss to not acknowledge the tremendous amount of courage, strength, love, and endurance, despite all our shitty circumstances, that we have garnered, along with help from our spouses & family/friends, to ensure our children grow up in a loving and supportive environment, regardless of challenging setbacks and a lot of heartache.

We are so much more than our scans, tumor markers, medications, treatment plans. Cancer does not define us. It does not define our roles as moms, wives, daughters, sisters. It certainly makes daily life harder, but we persevere and strive to be the best moms we can in lieu of our heavy obstacles.

I know as a Thriver mom there’s guilt or shame, frustration or sadness, thinking that we’re not doing enough, not helping enough, not being present enough. Let’s remind ourselves that a little goes a long way. Let’s remind ourselves that love, support, admiration, physical connection, making small moments and memories, go a long way, longer than we imagine. Even when we feel physically and emotionally exhausted from fighting cancer. So let’s try to not forget those moments; reading stories, playing Lego’s or cars/trucks, crafting, painting, snuggling, singing songs at bedtime, being silly, watching fun movies, eating tasty desserts, holding hands, playing at a park, riding bicycles. These memories are forming now. They will last a lifetime.

Happy 6th birthday my beautiful boy. I love you more than anything in this world. You are my greatest accomplishment. I love being your mom. 🥰 👦🏻

Love to you all – brave, beautiful Thriver Moms! 💖

The Healing Begins (Again)

At the beginning of this week, I felt like Superwoman. #Notdeadyet as one of my Breastie friends coined. Cancer keeps trying to bring me down. It keeps trying to fuck with me, but I’m still standing (thank you Elton John).

Some days, however, I feel scared, vulnerable, nervous, anxious, insecure, shaky, a sense of despair. My Neuro Oncologist made it clear what I had is a pediatric cancer. I’m 41 yrs old. After surgery she said, “I cannot say if this will or will not come back.”. There is no absolute answer. It’s the #1 reason why Survivorship is so hard (at least for me). If we only knew for sure that absolute answer, but we never will. We can screen and diligently follow up with each Dr appt, each prescription, test, trial, new development, but we’ll never know for sure. And then, BOOM, out of left field, lightening can strike again.

Not even 48 hours after my last (33rd) brain radiation, I’m eager to feel “fine”. I’m eager to move on with my life and push forward. If only Survivorship were that simple. Over these last few weeks, there’s been many ups and downs. Physically I am luckily feeling stronger each day. I still have seizure activity and headaches, (and a mango sized bald spot on the side of my head), but emotionally, it’s a mixed bag. Some days, I feel on top of the world, that I can conquer anything like Superwoman. I survived cancer not once, but twice! I feel empowered to embrace all that is life; the immense gratitude, the smell of Spring in the air, my beautiful 5 yr old son, the unwavering support of my husband, my loving & loyal dog Lenny. 🐶 ❤️

But those dark days peek through regularly, like the BRCA cloud that’s followed me since 25. Rearing its ugly head, waving at me from the corner of my room with a snarky sly face, “I’m still here!”. This is the balance we walk post-cancer, post-treatment, post-surgery; waiting for the next Dr appt, the next screening, the next “See you in 3 mths, 6 mths.”… Praying, manifesting, envisioning that, that shoe will never drop again, but logically know for so many others, it does indeed do just that – drop. And the shoe that dropped for me was out of nowhere.

It’s common for cancer survivors to fear the beast that is stage 4, treatable, yet incurable. Like with BRCA, this dark cloud hovers too close for comfort. The timing should be in your control, yet it’s totally out of your control. If cancer does present itself and that rain cloud bursts open, soaking your every fiber so that you cannot attempt to catch your breath and see through its darkness, you’ve become immersed in its driving force – again. I am permanently tied to this storm. It ebbs and flows, and moves in & out, but it never fully goes away.

With metastasis, there is logical connection between what was and what is. It’s not fair. It’s unrelenting and drives you to the edge of a cliff. But what if it’s not metastasis. What if it’s an extremely rare, once in a lifetime lightening strikes twice in the same spot type of situation and your battle with cancer the second time around has absolutely nothing to do with the first. No logical reasoning behind the two – zero connection. Lightening can actually strike twice in the same location, as rare as that is. It happened to me.

During my last visit with the Radiation Oncologist, I told him I’m nervous and asked how many adults has he treated with a supratentorial (frontal lobe) rela-fusion positive ependymoma. His answer was no one else (let alone anyone who also had breast cancer and is BRCA1+).

I don’t expect myself to come to terms with all of this in a few short weeks post-treatment. I understand it’s a process. I understand it takes time to heal (emotionally, physiologically, spiritually). It inevitably all brings me back to what got me through treatment in the first place, one day at a time. No one knows what tomorrow will bring. You cannot change what happened yesterday and you certainly cannot control what is yet to come. I’m still learning that harboring guilt, resentment, anger, frustration and grief, does not serve purpose in the long term. It is absolutely normal and common for cancer patients and survivors to feel all of these emotions, but what I’m finding more helpful is holding onto hope, strength, support, love and beauty. I’m trying to keep everything that’s occurred in perspective, that what will come will come. But now in this moment, this day, this hour, I am ok! I am still standing. #notdeadyet !! Repeat this to myself – repeat this to yourself, I am ok! In this moment, this hour, this day, the sun shining. It’s Spring. I am still standing.

✌🏻 💜

A Dark Place…

It’s every survivor’s fear, the “what if”. What if my cancer comes back? What if my cancer reoccurs? What if my cancer metastasized?

It will come as no surprise to those who follow me on social media that these last few weeks have been harrowing to say the least. It’s quite possible I’ve experienced every emotion known to mankind, perhaps sometimes within 1 day or even 1 hour! The week and a half leading up to a severely anticipated pathology report was incredibly taxing, and all that preceded was a total whirlwind!

Some have asked, what is it like to have a seizure? Well, to be honest, before I knew what was happening, I didn’t actually know I was having a seizure. My seizures were what’s called partial. Meaning, I was fully awake and cognitively aware as to what was going on as it was happening. It started, however, very subtle. Two left fingers, index & middle, would twitch a bit and would last for maybe about 10 seconds, and then not reappear for weeks. In mid-Oct, my jaw started to twitch slightly with these two left fingers. After speaking with my psychiatrist, we decided to wean off a medication I was on for a few yrs in case it was a side effect. Which I figured was most likely the case. My bloodwork was normal. Had a full body bone scan as well – also normal. Then in Nov, I had a full-on partial seizure. The left side of my face twitched uncontrollably for about a minute. I also had what I found out later to be called Todd’s Paralysis, where transient numbness traveled through the area that twitched. It lasted about a few hours afterwards. My speech was mildly affected as well. I had trouble saying certain words. It was at this time I made an appt to see a neurologist.

Fast forward 2 weeks, another partial seizure hit. This time I was in the shower and it lasted longer than a minute. I immediately called my husband to come home from work and bring me to the ER. That’s when I found out I had a 3 cm lesion on the right frontal lobe of my brain.

I was alone in the hospital when the ER doctor came to deliver the news. Due to COVID, my husband stayed home with our son. It’s hard to explain what it is like to hear the words “scan showed a lesion on your brain”, after battling breast cancer for over a yr. It’s a nightmare really, one that you wish you could scream and wake yourself up from, but know it is all playing out in real time. This is YOUR life. This is YOUR brain. Devastating.

Both neurosurgeons (from 2 different hospitals), were convinced this lesion was breast cancer metastasis, which is bad news, especially since I had triple negative breast cancer (which is aggressive and more challenging to treat). I wish, however, they would’ve kept their opinions to themselves, though I understand why theoretically they would believe it to be the case. The only person that was not convinced was my Oncologist. She said, “I don’t know what this is. You had a complete pathological response to chemo, but even if it is tnbc, we’ll figure this out.”. So important to love your oncologist. It is a life-long relationship!

As we waited for the pathology report, I was in a really dark place. I pretty much convinced myself this is metastasis. I tried to mentally gear up for what would be a super challenging road ahead, but having to recover from a craniotomy and being doped up on all sorts of other meds, it was hard to sort through my thoughts.

It was also difficult to focus on my almost 5 yr old son. He has a lot of energy (like most 5 yr old boys). I was emotionally and physically drained. I was also having very depressed thoughts – not being able to see him grow up, missed life achievements like graduations or marriage. In hindsight, next to being in treatment with IV chemo, these were some of my toughest and darkest days to date.

Strange to think one can actually get two different types of cancers, one totally unrelated to the other. My brain tumor is rare. Luckily, due to its overall lower grade, has a decent prognosis. But I would be lying to say I am out of the woods. I do acknowledge however, that luck seems to be more on my side then originally thought. I have a chance to beat this for good. I have a chance to live many many more years. I can dig deep and fight again like I did 4 years ago, but it is still no doubt scary. I will have to be watched/monitored very closely. There are now two different types of cancers that can reoccur in my body.

Time is an odd concept. I feel an immensely deep connection with Stage IV Thrivers. They are true warriors, true heros. No one knows what it is like to be in their shoes until they are and it is not for the faint of heart. Your body goes to war everyday. No choice. I am blessed to know them, to be a part of their lives and walk among such brave, beautiful women.

Treatment will start soon. Next chapter is coming. It’s one I obviously did not expect to write, but this time with the Breasties by my side. 💪🏻 💜 Let’s go!

Lost in Loss

My Dad used to say, “Man plans and god laughs”. Sometimes we do our best to prepare and plan for what we’d like to accomplish, but the “powers that be” may have other plans in store for us, ones that put a major kink in what we initially set out to do.

I recently told some friends that I must have absolutely no psychic powers. I say this because I went into 2020 feeling pretty good. I had a “sense” that it was going to be a solid year on many levels. All BRCA related surgeries were behind me. The end of 2019 marked 3 years since my last chemotherapy. I was/am still in remission and perhaps 2020 would finally be the year we move into a bigger home! I was feeling optimistic, excited, ready conquer what 2020 had to offer, including fixing my foobs! Yes it was one more surgery to deal with, but with my oophorectomy in the rearview mirror, I was ready.

Well, we all know at this point how the rest of 2020 unfolds… presidential impeachment, Australian wildfires, Iranian missile attacks, a fucking catastrophic global pandemic, protests & riots…! Nope! No foob fix for me this year and sadly, another loss to grapple with, the loss of my job.

I’m not unemployed yet, but the writing is on the wall. Leave it to a global pandemic to bring a $15+ Million company to its knees in 3 months time. As many can imagine, the crumbling of the statue happened quite fast. It was business as usual, then boom, a crash landing with embers still up in flames.

• 

I’ve never been unemployed. My career thus far has luckily always been upward mobility. I don’t think I realized until now, how much I take pride in the sense of accomplishment I’ve felt all these years. It is a part of who I am and I am luckily good at it.

The irony is not lost on me though (no pun intended), that it was only a year ago I was in a hospital undergoing another procedure because I am BRCA1+ and a breast cancer survivor. Losing both my ovaries and tubes was a heartbreaking surgery on many levels. I did it prophylactically to prevent risk of ovarian cancer, but it comes with a heavy emotional toll.

There was quite a lead up to the procedure. My husband and I tried to have a second child for 9 mths with no luck. We stopped trying at the beginning of 2019 knowing that it was time to proceed with this next step. I didn’t have to do it before I turned 40, but at the same time, I did. After an anguishing 2 years of chemotherapy, mastectomy, and reconstruction, I was not going to risk any chance of getting sick again. Was it brave? Yes, I guess so. But man, it was/still is incredibly painful to have lost that part of my womanhood. I have been managing the best I can, but as I approach another loss, the loss of my job, one that I did not nor could not foresee, has enhanced my deep rooted pain. It’s surfaced again.

Like millions of others, I am trying to find my way through this mess that is 2020. All of our lives have changed in one way or another. We have been forced to shift our daily way of life, our thinking, our ability to cope as social creatures and manage ongoing healthcare needs. It has been very challenging. I was holding out hope that things would change for the better over time, but that has sadly not been the case. The country is a mess and because of grave lack of leadership, it has compounded the severe struggle my company faces, elongating the road to recovery, one that I may not be able to hang around for.

So, I am feeling lost with loss as another part of my identity is uncontrollably removed. It could be temporary (that would be the best outcome), but with so many unknowns, it’s hard to say for sure. I am navigating my way through it. It’s still raw. At least I can find solace in the fact that I have navigated uncharted waters before and came out the other side, stronger for it. This too shall pass…. And when that break, that sense of relief comes, it will feel really good and will be really needed! 🙌🏻

Thank you for reading. ‘Til next time BRCA’nites. 💞

HRT – I thought I knew.

Circle back to a year ago, I was preparing for my prophylactic Salpingo oophorectomy.  I was consumed by the loss of not being able to conceive another biological child (earlier posts discuss this in more detail), knowing that my surgery was only months away (I turned 40 last Aug and recommendation for ovary/tube removal in BRCA+ women with my background is by 40).

I did my due diligence, researched online and asked my OB surgeon what types of HRT methods work best.  He said, without question, patches.  In my case, I need a dual patch that contains both estrogen and progesterone, since I was told that leaving my uterus was perfectly fine (research indicates most ovarian cancers related to BRCA, start in the Fallopian tubes and do not effect the uterus).  I was not, however, informed that there is a more rare form of uterine cancer potentially connected to BRCA.  Apparently this info. is newer (at least that’s what I was told by my Dr). He said, however, he is not concerned and that consensus is still Fallopian tubes and ovaries only.

I was also not informed about one of the crappy side effects I’ve been experiencing with my dual patch, called breakthrough bleeding.  I read about it prior to my surgery, so I was aware, but not informed that this is a greater possibility with a dual patch vs. an estrogen only patch (for women who have their uterus removed – they are candidates for estrogen only).

The first 6 months of my estrogen/progesterone combo patch went smoothly.  There were no hiccups aside from determining that I needed to switch out to a new one around the 3.5/4 day mark (technically they’re supposed to last 7 days, but realistically don’t).  Then all of a sudden, in early January, I started to get menstrual type cramping, bloating and bleeding, as if my period had arrived.  I was alarmed since there were zero issues for 6 months.

After speaking with my Dr he said I’m getting breakthrough bleeding and that it can be a problem with dual patches.  He also said, quite nonchalantly, that I probably should’ve taken my uterus out!  **SHOCK AND DESPAIR ENSUED**

He gave me a few options to try:
1.) Estrogen only patch with oral progesterone
2.) Oral estrogen and oral progesterone
3.) Estrogen IUD w/ oral progesterone
4.) Combo IUD – which is very new to the market
5.) Remove my uterus

After some Q&A, I decided to try option 1.  I gave it a good 4 weeks and it did NOT work out.  I was a hormonal mess. My emotions were all over the place.  The oral progesterone gave me an awful yeast infection.  The worst yeast infection I’ve ever had.  Plus I think the last time I even had one was like back in college, so it took some time for me to realize what was going on!

Basically all of the hormonal changes that were occurring in my body due to the HRT switch, were wreaking havoc on my vaginal area, disturbing the balance needed to keep things “status quo” down there (as status quo as it can be after an oophorectomy).  The oral progesterone was the culprit.  Yeast infection is a possible side effect (probably more likely than not).  And no, I was not informed of this!  Grrrrrrrrr….!!!!!!!!!

I decided to go back on the dual patch after specifically asking my Dr if breakthrough bleeding is dangerous.  It is not.  But here’s the issue, my breakthrough bleeding has continued and is now happening almost every day.  **ARGH!!!!!!!!**  It’s clear I need to pursue another avenue, but I do not know which avenue to pursue yet and I certainly do not want to have another surgery to remove my uterus. I am already planning on having breast revision surgery this year, which will be the 6th surgery I have in 5 yrs. 

Additionally, the dual patch is not perfect.  I start to feel crappy (hormonal, sad, easily agitated), typically around day 4.  So I’ve been changing my current patch to a new one on day 4, but I am not sure how that is effecting or not effecting my breakthrough bleeding (considering each patch is technically to be used for 7 days).

I have an appt with my Onco soon and will be speaking with her about these issues and concerns.  I need to find an expert to discuss all of this.  Not sure if that expert is a OB/GYN Onco or a Dr who simply specializes in surgical menopause at a young age/HRT, etc.

I am not considering going off HRT.  That’s due to the long-term benefits of staying on it – reducing risk of osteoporosis, dementia, heart disease, and other ailments.

BRCA life is not an easy one and does not end after cancer, mastectomy, treatment, oophorectomy, etc.  It is continued medical maintenance for balance and quality of life.  I am feeling frustrated but hope to gain some helpful guidance soon.

I also hate being a “guinea pig” with all this.  I’ve felt that way since I first learned I was BRCA at the age of 25 (back in 2005).  The medical community did not know enough back then.  It’s been trial and error since.

‘Til next time BRCA’nites and Breasties – Thanks for reading.
xo

The Pros & Cons of HRT

It’s been about 5 months since my Salpingo bilateral oophorectomy.  I mentioned in my last post, that I made sure my surgeon called in the prescription for HRT (hormone replacement therapy) patches before the surgery.  I had one ready to go after I came home from the hospital and it was necessary!  About an hour or so after surgery, I started having horrible hot flashes.  I was incredibly sweaty, which is not what one wants to deal with in general, let alone after surgery, still laying in a hospital recovery room!

Not all cancer patients, or those with high risk, are candidates for HRT.  Since my breast cancer was triple negative, there is no increased cancer risk for me utilizing HRT, at least within the first 4 years or so (per my Onco).  And the long-term benefits of going on HRT at an early age, or before natural menopause starts to take effect, are big.  It can help prevent osteoporosis, early on-set dementia, heart disease, and probably even more areas I am not as versed in yet.

So far, after 5 months of being on “the patch” (and I’m not talking about a nicotine patch, but an estrogen/progesterone combo patch – exciting!), menopausal symptoms for the most part have been kept at bay. 

Some women who opt to do a full hysterectomy, only need an estrogen patch.  My patch is a combo since I still have my uterus.  The progesterone helps to keep the uterine lining from getting too thick, which can also be a cancer risk! Since triple negative BRCA related cancers tend to only affect ovaries and Fallopian tubes, keeping my uterus is considered safe.  I chose this option for this reason. Plus, recovery from a partial hysterectomy (laparoscopic), vs. a full hysterectomy with a large abdominal incision, is much easier.

What I have noticed thus far, is that I primarily do not get hot flashes.  I will say however, on days when I switch the patch to a fresh new one, I tend to be a bit more on edge.  It’s certainly not full-on PMS, but there are moments that definitely resemble it.  I no longer PMS since I don’t cycle with the absence of ovaries (I was already aware of this), and that is a big perk ladies! 

I decided to switch my patch every 3.5 days vs. every 7.  I told my OB/GYN (who was also my surgeon), that by day 5, I would start to get mild hot flashes.  I would also start to feel more mopey.  He recommended I switch it out sooner and this has definitely helped to eliminate these issues.  He said this is not the first time he’s heard of this either.  They claim the patch lasts 7 days, but in all actuality, it really only lasts about 3-4.

I’m sad to say the patch does not do much to improve my libido.  Overall my sex life has improved since recovering from cancer treatment and various surgeries.  I wouldn’t, however, go so far as to say the patch adds anything to sexual desire.  Additionally, (and this is a very intimate fact, yet necessary to share with fellow BRCA’nites and Breasties), I do need help down there.  I am not ashamed to say it!  A fellow Breastie recommended coconut oil.  It does help.  I will leave it at that!

Check it out:

Coconut Oil 🥥 🌴 😎

Time will tell how much HRT may or may not impact my future health.  I feel confident though, as much as I can at this point, that I made the right decision.  It’s good to remember that there is no exact “right” or “wrong” for anyone who finds themselves in these complicated predicaments. My recommendation is to not only listen to the medical community, but also trust your own gut instinct.

It has been challenging to say the least, to not think about all I’ve lost over these last few years.  I lost my ability to carry another biological child.  I’ve lost both my natural breasts.  I’ve lost fullness in my hair from harsh chemo (I have not given up on this yet – still using Rogaine and still thinking about trying PRP).  And, I’ve definitely lost some psychological balance in dealing with all this heaviness, but I am alive, cancer free, and have eliminated my risk of ovarian cancer. I try to hold onto that during moments of sadness.

Till next time BRCA’nites & Breasties! 

Thank you for reading.  🙂

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.

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.

I 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!

-‘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.

So 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!

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!

 

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.

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.

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