A conversation with my mom, a breast cancer survivor, at Christmas 2020.
Me: Hey Mom, do you remember Breanne? My old friend from back in the day? I was thinking about her recently and looked her up. She just went through some really intense treatments and surgery with something called Triple Negative Breast Cancer. I googled it and it’s this really aggressive cancer with fewer treatment options because the cancer tests negative for hormone receptors and hormone therapies don’t work on it. It’s more likely to spread and the recurrence rate is high after treatments.
Mom: That’s awful, she’s so young. I’ll keep her in my prayers. I haven’t heard of TNBC either. It must be pretty rare, if I just got through breast cancer and it was never mentioned. I didn’t even know there was more than one type of breast cancer. Isn’t that crazy?
I remember vividly the day I found out something serious was wrong with my health. It was a chilly morning in February. Mike had just gone off to work and the kids were at my in-laws. I made my way into the city to meet with a lactation consultant. I had called for an appointment with my OBGYN the week before and mentioned that I had expressed some blood, and having just finished breastfeeding my baby girl two months prior, the receptionist assumed this would be a lactation-related appointment and did not give me an urgent appointment spot. With this in mind, I was confident the symptoms were a clogged duct and perhaps an abscess from mastitis and I’d be given some antibiotics and be sent on my merry way.
The LC examined my breast and seemed quite concerned when I showed her that this was deep red blood and not milk being expressed and I showed her the hardening on my breast which I assumed was the clogged ducts. She quickly left the room and returned with a doctor who gave me a breast exam. “Don’t panic,” the doctor said after examining me, “but this type of bleeding is never normal. I’m referring you to a breast surgeon and need you to get imaging ASAP.” I was shocked I knew I had lumps but I had just a mammogram over the summer and a physical in the fall (due to health concerns I’ll touch on in another post) and nobody was concerned about the lumps and bumps.
You see the problem with large and dense breasts is that the standard “lay back on a table examination” isn’t effective, she couldn’t even feel the lumps until I showed her by sitting up and leaning forward.
All I know, is no antibiotics were given and the serious look on their faces as I cracked jokes and tried to keep things lighthearted still haunts me a bit. So much so that I immediately applied for life insurance (spoiler: I was denied coverage).
The following week I went for a mammogram and ultrasound. As I waited to be called in I posted a photo reminding people to still get mammograms even in the pandemic still trying to keep things lighthearted. My mom had just gone through breast cancer when Vivienne was born. She had a double mastectomy with reconstruction surgery and is able to take oral meds and completely avoid chemotherapy or radiation. It was a tough recovery for her, but she is thriving now, surely being only 35, I could get through it too.
I had the mammogram, and laid down to make small talk with the ultrasound tech as she got me prepped. We had gotten to know her over the summer when I came in for imaging due to pain in my other breast. Having just turned 35, insurance approved me for imaging of both breasts, but I was only given an ultrasound of the non-cancerous breast because (go figure) that’s the one I had pain in.
It’s important to note here that women with dense breast tissue should always have ultrasounds of both breasts following mammograms. This should be the standard of care. It was not for me.
As she imaged my breast, the tech and I chatted for a good 20 minutes about the crazy election that had just taken place and what a year 2020 had been. What I remember most from that conversation is her telling me what an absolute mess my breast was. The head of breast imaging came in to take over the ultrasound and recommended biopsies of three different areas of my breast and a swollen lymph node under the arm. I would have to make an appointment at the office in Farmington where they perform the biopsies and surgeries, and they were booked almost two weeks out. The thought in my head at that time was “well shoot, my mom didn’t have that many suspicious areas, this isn’t good.” I called my mom in tears as I left, the appointment, all I remember saying was after a global pandemic, two miscarriages, and poor health all year, could this really be happening to me?
After another long week until I could finally meet with the breast surgeon. I went alone to the appointment thinking it would just be a quick consultation until I could get the biopsies done. She was, however, able to do a biopsy of the largest suspicious area right in her office, and told me the results would be back the next week. She sent me for genetic testing that afternoon, and then I met my sister for a much needed shopping date to get my mind off of everything. It was our first time really doing mindless shopping since the pandemic started. We went to some home goods stores and ended our night at TJ Maxx, where I bought a scalp shampoo massager, a new shower cap, and some hair ties. I knew of exactly two people that had breast cancer and had gone through chemotherapy with hair loss. I had just been told this could be cancer, during a pandemic, holding the hand of a stranger while they stuck a needle in my breast. It clearly hadn’t crossed my mind that this might be the type of cancer that requires these treatments. I shake my head in disbelief every time I look at that darn shower cap now.
It was late afternoon when I got an email from Quest Diagnostics that my results were ready. I had signed up to get results on bloodwork back when we were going through infertility treatments, and when my son was sick. We didn’t know my pathology report would also be done by them and I’d have the results of my biopsy available before I could hear from the surgeon.
This wasn’t the way it was supposed to happen.
I was finishing up work (from home) for the day and Mike was heading to pick the kids up from his parents house. I called him immediately and asked him to stay at his parents house with the kids. I knew getting these results at home by myself was something no one should have to go through, but I didn’t want my children to have to see me breakdown and I simply could not wait until the doctor’s office opened the next day. Our 4 year old had been picking up on too much lately with all the stress the year has brought and I couldn’t bear the thought of him seeing me upset, nor did I think I could put on a brave face through dinner and bedtime.
All too familiar with lab reports, I opened them immediately and scrolled down to the diagnosis, already knowing in my heart it was cancer. Invasive Ductal Carcinoma it read, but it was followed by a lot of NEGATIVE testing and for a brief moment I had hope that this was a good thing. I dialed the breast surgeon’s office and explained my situation to the after hours answering service, asking if a doctor on call, ANY doctor, could call me back. I was told she’d relay the message but that they did not usually call back after hours in situations like this. I never heard back from anyone.
I made some phone calls to two friends in the medical field, and had to put one of them, my next door neighbor and lifelong friend, in the terrible position of telling me that I had breast cancer, and the negative tests results meant it was Triple Negative Breast Cancer.
Triple Negative Breast Cancer.
Well I knew all about Triple Negative Breast Cancer now. I called Mike to break the news to him and asked that he stay with the kids at his parents for dinner. My Dad was calling on the line line and I could barely breathe as I told him the news in between sobbing. He and my mom showed up at my house a little while later to sit down and interpret the pathology report line by line with the help of Dr. Google.
I took a Xanax that night and was fortunately able to have a deep and dreamless sleep, the last good sleep I’ve had since my cancer journey began.
1 in 10 women have Polycystic Ovarian Syndrome (PCOS). Thats 5-10% of women of childbearing age. PCOS is an endocrine disorder that disrupts hormone balance, causes irregular menstrual cycles and is the leading cause of infertility in women. Little is known about what causes PCOS, and there is no cure, it is a lifelong struggle. Telltale symptoms are irregular menstrual cycles, acne, facial hair, weight gain, diabetes and infertility.
I was diagnosed with PCOS over 20 years ago, after virtually every possible acne treatment failed to work on my skin, my mom read a brief blurb about PCOS in a magazine and brought me to an endocrinologist to get me tested. Traditional doctors prescribed birth control and anti-androgens which worked to disguise the physical symptoms of the disease but did nothing to treat the disease. Other doctors told me to focus on diet and exercise– but I was already eating clean, low carb and staying fit.
It was then that I really began to research endocrine disorders and infertility and learned about Endocrine Disrupting Chemicals (EDCs) and I discovered that small amounts of exposure to these chemicals all day, everyday add up. It made me think, how can PCOS and Infertility be so common yet so little be known about the disease? Could this have been avoided altogether if we hadn't been exposed to EDCs? Could continuous exposure to EDCs through my skin be worsening my PCOS? And why aren't there laws protecting us from this stuff?
:Last night we microwaved some broccoli in a steamable bag, and questioned the safety of what we were eating. Someone at the table said "well I'm sure they wouldn't put dangerous stuff in bags containing the food we eat" and the conversation turned to, well who is stopping them? There aren't clear laws saying they CAN'T, and there certainly wasn't anything written on the bag regarding the safety. Do we really know what is in the food we eat? Or the products we are putting on our skin - our largest organ? If laws don’t protect us, and we still buy these questionable products then nothing will change.
Here are some of my current favorite non toxic personal care products:
Thoughts on pregnancy after loss
A little over a year ago we cautiously announced our pregnancy to everyone when I was 18 weeks pregnant and wouldn't you know, it upset some people that we waited so long to tell everyone.
You see this was our rainbow baby, our first pregnancy after experiencing two miscarriages and spending years battling infertility. While we were over the moon that we had made it to the second trimester for the first time, the fear and sadness was always in the back of our minds.
The two years leading up to my pregnancy were the craziest, most emotional years of our lives (and I say this having just been through the newborn stage with my son). They consisted of rounds of hormones, pills, and injections, timed IUIs and two subsequent pregnancy losses. I was traveling over an hour round trip, 3-4 days a week to see a Traditional Chinese Medicine doctor and have acupuncture done. I was burning paid time off from work visiting the fertility clinic (three towns over) almost every day for bloodwork, ultrasounds, and exams. I was battling the insurance company over coverage. The medications were causing hair loss, weight gain, and extreme hormonal mood swings. I was exhausted, stressed, and sad all the time.
I know it difficult it is to support a loved one dealing with infertility and pregnancy loss. There never seems to be the right words and too often well meaning words can come out offensive. In fact my husband and I would have a good laugh at some of the outrageous things people would say to us without thinking. I'm here to tell you though, that is never, under any circumstance ok for you to get upset with someone for not sharing their pregnancy announcement with you sooner.
To those that were upset we chose to wait to tell you about our pregnancy: Yes I finally had a successful IUI. I had my BFP and lines that kept getting darker and darker each day. What you didn't know is I saved each test and obsessively examined the lines, terrified of them growing fainter again instead of stronger. Everyday of those first 4 months I wanted to shout a pregnancy announcement from the rooftops but was also terrified of somehow jinxing myself and so I held out. The thing about multiple pregnancy loss is those two pink lines instill fear and joy in you in equal amounts. And fear and joy battle it out throughout your entire pregnancy. I panicked at every strange new sensation I felt and cried happy tears at every kick I felt and I took absolutely nothing for granted.
My best suggestion for comforting someone who is battling infertility? A big hug and an open ear. Bring over some food and let them talk. Be silent and do not minimize their loss.
We are in the thick of it with our sweet 8 month old baby boy, but on the final day of Pregnancy and Infant Loss Awareness Month, I can't help but think about how many others are going through hard times right now. I worry too about what might be in store for us as we try for our second baby. Hugs to all my fellow TTC sisters, no matter what side of the journey you may be on.
Hi friends! I recently became a consultant with Beautycounter and wanted to share a little bit more information with you about why I love this company and the products we sell.
As many of you know, we struggled for years to get pregnant with our son, going through grueling fertility treatments and suffering multiple pregnancy losses and we were desperately looking into anything and everything that could help us get- and stay- pregnant. I was diagnosed with PCOS (Polycystic Ovarian Syndrome), an endocrine disorder that causes hormonal imbalances, infertility, acne, obesity and can often lead to diabetes and heart disease. Every doctor we went to told me that the best thing I could do was focus on wellness and so I began eating clean organic foods, staying active, taking high quality vitamins and supplements, and using acupuncture. One morning my husband watched me get ready for work and made a comment about all of the personal care products I was using, and how they couldn’t possibly all be safe and I realized I was neglecting to look at what I was putting ON my body.
Did you know that your skin is your body’s largest and fastest-growing organ? The personal care products and cosmetics you put onto your skin are absorbed into your bloodstream. What you put onto your body doesn’t just stay on your body, it goes into it, too. I started looking at the labels on the products I was using and found chemicals known to cause cancer, birth defects, hormone disruptions, infertility and even damaged sperm!
I discovered Beautycounter products when they made a limited time appearance at Target a couple of years ago. Beautycounter is a line of safe, effective and luxurious skincare and cosmetics for the entire family that bans over 1,500 of these dangerous chemicals in their products and has the strictest screening process of ingredients out there. You can read more about Beautycounter's story here.
I care so deeply about my family and friends being able to control some of our environment, and I’m so grateful that Beautycounter is here, and providing these gorgeous, safe products. In our busy, hectic lives we don’t have the time to think about these things, and switching the products my family and I use over has brought me peace of mind and the ability to focus on other important things. I would love for you to feel the same way.
Interested in learning more about Beautycounter? Click here to join the conversation! Please feel free to email me at email@example.com if you'd like some recommendations or have any questions. You can shop using the link below:
It has been a CRAZY few days, filled with tears, hope, anger, and when it all came together some big huge belly laughs.
After a second round of Letrozole mid cycle, my body just doesn't want to ovulate and so my doctor immediately started me on Follistim for two nights. Once an ultrasound can confirm that Follistim worked, then I take the trigger shot Ovidrel.
It has been a NIGHTMARE trying to get these two medications through CVS Caremark, who will only cover them through their own mail order specialty pharmacy. Unfortunately I needed Follistim same day and it was 8 hours on and off the phone with them, transferred from person to person each having no record of my previous calls and promising me calls back that never came. (The same thing happened with Ovidril the day before, my doctor had thought I'd be needing it the next morning and getting it approved and shipped was another 8 hour saga the day before).
So between traveling every morning into the city for bloodwork, ultrasounds and acupuncture appointments, and sneaking constant phone calls, I completely LOST it at work after they told me my Ovidrel didn't ship and there was no record of me calling (twice) to request an override for Follistim pickup at a local pharmacy. I left work early a hysterical hormonal mess (so embarrassing) but refused to give up and I finally got confirmation Ovidrel had shipped and Follistim could be picked up locally. I had to give them HELL to finally get to this point.
My husband, left for the 2.5 hour journey in rush hour traffic to get to the one pharmacy they agreed to cover the RX at before they closed and I stayed home to wait for the Ovidrel delivery. Only to open my door an hour after he left and find it sitting on my front steps. It didn't even need a signature! My husband took a vacation day to wait at home for the delivery, my dad came over to monitor the door while we went for my follow up appointment, and I left work early just to make phone calls to get my meds and none of this needed to have happened if CVS Caremark reps could have just done their jobs. This is by far the worst customer service experience of my life. But in the end I got my meds, prayed the days of stress won't hurt the effectiveness and went to inject the Follisitim with a grateful and hopeful heart. Guess what?
The medication cartridge was missing from the box. We called the emergency number at the pharmacy and spoke to a the nicest woman who said this is the craziest thing that has happened to her in all her years of being a pharmacist. 2 of the 3 other packages of Follistim she had were also missing the medicine but PRAISE BE TO GOD she had one last box with the medicine in it. (Apparently there's a nationwide shortage of this stuff).
So her husband met my husband halfway to get the medicine to us; and finally FINALLY at 10pm I administered my first injection.
What a crazy few days. I'm convinced that the Letrozole hasn't worked because of stress (there's been a lot going on at work) and this cycle just continues to be challenging to the very end. Struggles make you stronger, right?
The icing on the cake is when I opened the box of Ovidrel delivered from CVS Caremark and saw the brochure below. I started laughing like a maniac. Fertility is absolutely NOT your specialty, CVS Caremark. Women struggling with PCOS and infertility wait weeks sometimes months to get to this point in their cycle, and it is completely unacceptable that a prescription benefit provider with untrained employees almost set us back another 30-40 days in our journey and caused so much stress.
I started this blog with the best of intentions. I thought it could be cathartic to write about my experiences, and connect with so many others who are going through the same thing. I thought it could be nice to look back on our documented journey someday with baby in arms and be so grateful for what we have.
And then I lost myself.
All the photos and sad stories from other women online just suddenly became too much. It became my life, an obsession with getting pregnant and I didn’t understand this world I was suddenly in. I couldn’t entirely relate with others at the beginning of my journey. Was I sad and lost? Yes. But I hadn’t yet been through so many of the procedures and medications as others had, and it both depressed me and made me feel bad for trying to relate to others who were years into their journey.
I saw so many of my friends still going out, drinking socially, working long hours at their job and still getting pregnant easily. I thought I could do the same. I thought I could still maintain the high carb vegetarian lifestyle that kept me thin for years, despite the warnings that carbs + PCOS = bad. I thought a couple rounds of Letrozole and I had this pregnancy thing in the bag. I thought I’d never have to hear the doctor suggest trigger shots, and IUIs and ovarian drilling.
All we have is hope, and I’ve learned to never feel foolish for being hopeful.
In other words, I thought I wouldn’t have much to document, that my journey wouldn’t be as long and emotional as so many others. I feel foolish now for being so full of hope, but none of us begin this journey thinking it will be as long as it is, do we? Never in a million years do we think that first visit at the fertility clinic will lead to cycle after cycle of trials and failures, hope and disappointment. All we have is hope to get us through some of the most trying of times, and I’ve learned to never feel foolish for being hopeful.
After an exceptionally rough cycle of failed medications, insurance coverage complications, hours of phone calls and upset friends and family who can’t understand why I haven’t been myself, I’m back to writing. My loved ones may not know what to make of this chubby hormonal emotional wreck I’ve become, but I know there are women out there who get it. So here’s the latest from my world:
My cycles are irregular and different each and every time and completely unpredictable. I had a pregnancy on my third round of Letrozole that resulted in a chemical miscarriage at 7 weeks. The sadness hit me hard and long. I didn’t expect that. I had one cycle without medication after the pregnancy ended and then two more rounds of Letrozole this cycle (the first didn’t work so they upped my dosage and had me start again mid cycle).
I am now finished with round 5 of Letrozole, which has not resulted in ovulation, and tomorrow I go in for an ultrasound and more information on how to time my trigger shot appropriately for an IUI. I’m hyperstimulated, and my stomach is so swollen right now I look pregnant, but if it results in a pregnancy.
So here I am, humbled and full of hope.
As soon as my hubs and I found out it was Taco Tuesday we knew we had to make one of our favorite "quick and easy" meals, Sweet Potato Tacos, for dinner. These tacos are vegetarian, gluten free, and surprisingly low calorie. I add black beans and greek yogurt for protein, but my husband who is not a vegetarian, keeps frozen organic chicken strips in the freezer, to add to his meal. I should also mention that the man despises mushrooms, but when I take the sliced mushrooms and dice them instead, they don't become the centerpiece of the taco and he still eats this meal eagerly. It's a great way to sneak an extra vegetable in for picky eaters!
This recipe can easily be made start to finish in 20 minutes and makes about 8 tacos and serves 3-4 people. I find that 2 tacos fills me up, but he can usually eat about 4 of them. Other optional toppings: sliced avocado, salsa, fresh lime juice & cilantro or sour cream.
I'm such a sucker for a good taco flavor, and as a vegetarian I admit I like to make a lot of mexican-flavored dishes to spice up some otherwise rather bland vegetable dishes. The pre-made taco seasoning packets you can purchase at the store are packed with sodium and preservatives though, and it occurred to me that I really could just make my own. I've tried so many different combinations of spices, and think I finally came up with one that I just love - even more than those prepackaged brands! I like to make a big batch of this and keep it in a sealed container, for easy use. Here's my recipe:
I made it my 2015 resolution to live as natural and healthy of a lifestyle as possible, and soon fell in love with all the health benefits that a simple cup of tea can offer, especially for a woman battling PCOS. I regularly sip on herbal teas throughout the day to keep me hydrated and warm in the office during the cold fall and winter months. Here are some of my favorites and why I love them!
Today is the last day of September, PCOS Awareness month, so I thought I would share my story with you. Aside from my family, I've kept my story mostly to myself, largely because it's not exactly something that comes up in conversation. As I begin the next phase of my life and face the hand I have been dealt, I am opening up in hopes of connecting with other women going through a similar struggle with PCOS. You are not alone.
"Where there is no struggle, there is no strength" - Oprah Winfrey
I'm Jayne, a 30 something Executive Assistant living in New England with my husband, Mike, our sweet miracle baby and our Labrador Retriever. I have a passion for nontoxic living. I love coffee, recorded TV, baking, red wine, vegetarian cooking, online shopping, fashion & beauty.