Fertility, Infertility and Secondary Infertility

This is a topic fraught with so many sensitive issues and let me say up front that I am not an expert on any of it. What I am is a woman, a daughter, a wife, and a mom.

Some background on me … I delayed having children on purpose because I wanted to build my career and to spend quality time with my husband. When we got married in 2008, we were both out of our 20s; well, I turned 30 a few months after we got married. When we were ready to conceive and I stopped taking birth control, we thought it would happen quickly. It didn’t. So, we went down the road of testing and monitoring my fertility closely. I quickly grew to resent the charts and forced timed intercourse that only highlighted my continued failures.

Still, no pregnancy.

We then went to a fertility specialist and went down the road of medication; fortunately, just the oral kind. It took time and there were lots of delays, many times we got our hopes up only to be disappointed, and there were many many pregnancy tests. Going every day for a vaginal ultrasound around the time of fertility was super difficult to work into my schedule and wasn’t fun.

Then, yes, we got pregnant and our eldest boy was born in 2013. Once we decided that we wanted to give him a sibling, it was back through the fertility rollercoaster once again. Different this time was that I was nursing and refused to wean just to get pregnant. (I was a difficult patient long before I got cancer!). This time, because I was nursing, I had to give myself daily shots. After months of trying and lots of shots, we were finally able to get pregnant again and our youngest son was born in 2015.

Our two boys are exceedingly precious to us, even more so because of all the effort and time and angst to get pregnant. Nursing was even more important to me because it felt like it made up for my body not doing what it was told.

Fertility was the first time my body failed to do what was supposed to be natural and normal. Finding out that I have Stage IV metastatic breast cancer was the second time my body failed me.

When we met with my breast surgeon so that she could give me the results of the breast biopsy and tell me I had breast cancer, she asked us about fertility and what our family plans were. We didn’t know how blessed we were that she was up front and discussed our options with us directly and candidly at the very beginning. Since we’d been on the fence about the possibility of a third child, the diagnosis gave us a pretty clear and definitive answer about that. At the time, it didn’t seem like another loss, but it was.

No, my experience was not to be told I would never be a mother.

No, no information was withheld from me so that it was too late to preserve my fertility.

Yes, I have two amazing little boys who I was able to carry to term.

No, I’ve not had to suffer the loss of a child through miscarriage.

And yet, the end of the possibility of my body nourishing another child was a major blow. Immediately, the largest change was that I had to immediately wean both of my boys. We’d been nursing for 4 years, the last two years as a tandem threesome. Nursing was literally inextricably intertwined with how I mothered my children and the adjustment was devastating. Since nursing was how both of my boys drifted off to sleep each and every night of their lives, bedtime was torturous as we adjusted to weaning and the fact that I had cancer all at once.

I think the devastation of learning I have a terminal diagnosis along with the devastation of weaning masked the sadness of learning that there wouldn’t be another child of my body who shared the traits of both my husband and I. Once some of the shock wore off, I was able to feel some of that loss.

Fertility, infertility and secondary infertility are becoming less of a taboo subject over time. Women are speaking up more and more about the toll these losses take and how silence about these losses only makes them worse. So much worse. I’m not sure we ever really get over these losses and having to hide how hard it can be is probably the worst way to handle it.

Being given a terminal diagnosis means that I’ve had to grieve the loss of so many things. Even things that I didn’t really even realize that I wanted. We have to continue talking about loss, talking about grief, talking about how dealing with these things can affect all of us. Only when we get things out in the open to be able to examine them, grieve them properly and then put the loss in the appropriate context can we move forward with the grief. No one truly moves past grief, it just becomes a part of us in a more manageable way.

For now, I will focus on the amazing gifts I’ve been given, EMBRACE the reality of the here and now, and offer support when I can to those who are still grieving. When women support other women, truly amazing things happen.

ATM Mutation (Originally published in Wildfire Magazine)

If you don’t already subscribe to Wildfire Magazine, go sign up now!!  It’s amazing and you will get content from a wide variety of talented men and women. A version of this post was originally published in 2018 in the Genetics edition of Wildfire.

When I was first diagnosed with breast cancer, my breast surgeon tested for the BRCA1 and BRCA2 genetic mutations only.  When that test came back negative for both, I really thought I was in the clear and my breast cancer was just a product of cells going haywire and nothing I could pass on to my two boys, then four (4) and two (2). Wow, was I wrong.

Only a few months later, we found out that despite having clear margins in my surgery and my sentinel nodes testing negative, I had actually been Stage IV since the beginning (a/k/a de novo).  With that diagnosis, my medical oncologist decided to test for the whole panel of genetic mutations, more than 40.  I wondered briefly why my breast surgeon hadn’t done that but went along. When the results came in, I discovered that I was positive for the ATM mutation.  After the inevitable jokes about getting money from the ATM, we settled down to research and share the information with the family.

As my family has gotten tested, we discovered that the ATM mutation came from my mother’s side (she is a breast cancer survivor and was tested over 15 years ago for BRCA only, which was negative).  I’m the eldest of six (6) children and I’ve cousins and aunts and uncles—there are a lot of us to test and not everyone is super excited to find out.  Understandable.

The ATM mutation is presently linked to a moderate risk of breast cancer (tell that to the crazy cancer cells that decided to mutate and spread everywhere in my body), a low risk of pancreatic cancer (1% more than the general population) and, most recently, a risk for prostate and ovarian cancer, which is still not quantified.  There’s actually more prostate cancer than breast cancer on my mom’s side of the family, which is why we weren’t surprised when the new guidelines came out with prostate included in 2018.  The other interesting phenomenon is that the cancer appears to be getting more aggressive with each generation.

When I first researched the ATM mutation, I was surprised to discover how little there is available to read.  The genetic counselor my husband and I met with verified that it is a relatively newly discovered mutation and there isn’t much available about it yet.  My sister’s genetic counselor referred to it as an “up and coming” gene.  That language is rather astonishing and we’ve joked about being more trendy than we realized – yes, humor is a good coping mechanism, even a bit of dark humor.

One note about genetic counselors — at last count, amongst the many members of my family scattered about the country, we’ve encountered, as a family, no less than ten (10) genetic counselors. The variety among the advice we’ve all received has been astonishing. There does seem to be some differences based on geography and whether the counselors are in an academic institution; however, it is important to note that this piece of our families’ journey is as much about art as it is about science.

Despite the fact that men can get breast cancer, it is currently believed that if I pass along this mutation to my boys, they won’t have a higher risk of breast cancer; however, they would need to be screened earlier for prostate cancer.  I am thankful that the testing for prostate cancer is much more precise than for breast cancer and that treatment is typically very effective.  You see, this experience with breast cancer and genetic issues has caused me to be thankful for the oddest things.  Yet, there it is.  I AM thankful that my children will be better protected than I was.

It is hard to describe my feelings about the possibility of passing along genes to my children that could kill them.  My husband and I struggled with infertility and I had to go through a lot of needles and tests and treatments to get pregnant both times.  I struggled with maintaining breastfeeding with my eldest while we were getting pregnant with our second son because of all the medication I had to take to get pregnant.  Our children were and are wanted and deeply precious to both my husband and I.

Knowing that I may give them something so deeply embedded in their DNA that is akin to a ticking bomb terrifies me.  Plus, it is unethical for children to undergo genetic testing for something that is an adult issue.  As a parent, I have struggled with this because I want to KNOW if I’ve passed something on to them.  I want to be able to tell them that they don’t have to worry if they test negative. I want to be able to remove that worry from my list of things that I stress about daily.

But, we can’t.

Since my children are so young, discussing how I got cancer or why or any of those deeper discussions are simply not appropriate yet.  They don’t understand anything beyond basic principles and we are careful how much we share with them.  Sadly, with the life expectancy I face, I will probably never be able to have those discussions with them.

The best I can do is to focus on gathering information for them and leave them the information that they need in order to be empowered at the right time.  Like the BRCA gene, so much more will be discovered, maybe not within my lifetime, but certainly within theirs.  Knowledge truly is power and with screening and early detection, this risk may not end their lives well before a “normal” or “natural” life expectancy as it will mine. If my grandchildren include girls, they may not be so lucky.

I am thankful that I have information that will help me prepare my children and I certainly do not wish that I’d never brought them into the world; however, I regret that I’ve given them something that may cause them pain.  As a parent, I desire only love and good things for my boys.  I am hopeful that they will use the information I will leave for them wisely.

A quick note for anyone at the beginning of their breast cancer treatment/diagnosis — even if it isn’t offered, ASK for the full panel. You need to know more than just BRCA1 or BRCA2. Get the entire panel done at the beginning. I wish I had.

Talking to children about Cancer (or any other terminal illness)

This is a topic that has haunted me since I heard in 2017 that not only did I have breast cancer, but that I’m incurable.  Having a terminal illness puts many things into perspective; however, the diagnosis does not come with a road map.  Rather like parenting … I remember that horrible feeling of astonishment and being overwhelmed when we were permitted to take our newborn baby home from the hospital, knowing nothing!

That feeling of free falling without a parachute or plan has become a bit familiar to my husband and I when it comes to parenting.   We’ve learned to trust our guts, to do research and talk to whomever will talk to us, but then we’ve gotten good at making a decision that seems best for our family and not looking back.  This is a function of how we both do life and it has worked well for us.

So, when we were faced with a terminal diagnosis and the quandary of what to tell and to whom, we have pretty much applied our tried and true method.  At first, we were extremely reticent and didn’t say much to anyone and we’ve worked our way into what works for us.  We’re still refining that process, but here’s a few things we’ve learned along the way about talking to the boys …

  1. Be Honest.  We haven’t hidden from the boys that I’m sick.  We’ve had to talk to them about being gentle and not running away from me since I can’t move very quickly.  The boys know something is going on and we didn’t want to hide things from them. Certainly we haven’t told them everything, but they know enough to know that if I’m having a bad day and I can’t be active with them, it’s not their fault.
  2. Be Genuine.  The boys are aware that I have limitations and I explain them as best I can to them.  After I had leg surgery, I was in a wheelchair, then I used a walker and then a cane.  I couldn’t climb stairs for a while either.  My eldest still talks about how the doctors needed to “fix my run” so that I could play with him.  He understands my limitations in terms of how that affects him, absolutely developmentally normal.
  3. Embrace Fun.  When I knew that I was going to lose my hair, I’d read that it would be best to shave the hair off when my scalp started hurting.  Since all the little hairs were also incredibly annoying as they fell out and got everywhere, it was a relief to get rid of it.  We told the boys that I was going to shave my head and they participated in the exercise.  Both my husband and my dad also shaved their heads.  Since it was hot and my wigs were itchy, I simply went bald.  The boys had a great time rubbing my head and then my stubble as the hair grew back.
  4. Be Open. Every time I go into the hospital and can’t come home for a few days, I know it worries the boys.  They are too young to talk about their fears, so we try to name what we can think of and speak to them.  We particularly like the “feeling buddies” from Conscious Discipline and would encourage anyone wanting to talk to their children about feelings to check it out.

The boys are so young right now that it is hard to imagine having more in depth conversations with them.  We will keep going at this the best way we know how, by researching, being present with the boys, and continuing to explore how best to support them through this amazing life together as a family, even with the storm cloud of a terminal illness hanging over our heads.

An Open Letter to My Eldest, on his 6th Birthday

L, when you came into our lives, you changed everything.  You made me a mom and you have shown me how to look at the world through someone else’s eyes.  You have shown me, most importantly, how to look at myself through someone else’s eyes.  Knowing that you look to your father and I for how to do “life” is both terrifying and amazing in equal parts, at all times.  I know we’ve screwed up and I know that we haven’t known what to do at so many junctures.

Yet, I also know that you know that you are loved.

I know this because I know you sometimes better than I know myself. I have looked into your eyes and watched you assimilate life and experiences your entire life. I have watched how you react and how you do life and how your inner world affects your outer world.

Before you were born and continuing to this very day, your 6th birthday, your father and I have talked about what your future might look like.  We joke a bit about your father deciding that you will attend Harvard for both undergrad and medical school–the point of all that dreaming is that we see your future as unlimited and bright as the sun.  You have so many capabilities and we see so much success in your future; not just academically or professionally, but also because you are an authentic person and you see the best in the people around you.  While we are always happy to hear about how you earn the highest marks in school, what makes us even more ecstatic is to hear about how you are kind and genuine and inclusive and you are yourself, no matter what.

We see how much you love math and how you have amazing visual and spatial awareness.  You have so much natural athletic talent and you love to understand how things work.  Your excitement at discovering new ways to add various numbers or solve word problems astonishes this math deficient momma, but I love that you love it.

Today, and every day, we celebrate you in all your uniqueness and abilities and for the person you are.  We will continue to make mistakes as your parents, but know that we will always love and support you.  You are precious to us, more than you will ever really know until you hold your own firstborn in your arms and your world changes in an instant.

Love Always,

Mom

FOMO

I learned this new acronym recently from a dear friend and fellow metster, Emily Garnett, who has an amazing blog (Beyond the Pink Ribbon) and podcast (The Intersection of Cancer and Life) that all of you should follow if you aren’t already.

FOMO = Fear of Missing Out

I had never really experienced this concept with my kiddos until very recently. When I learned I was pregnant, I was committed to being the best mom I could be.  While the natural birth didn’t happen with either of my kiddos, I threw myself into motherhood with all that I had.  No one who knows me is surprised by this, since I’ve never been able to anything in moderation.  We co-slept, we nursed and nursed and nursed and I pumped and pumped and pumped.  When I was diagnosed with breast cancer, we were tandem nursing and the boys were about to turn 4 and 2.

All of a sudden, everything changed with my parenting and mothering experiences.  I absolutely believe that there is no one right way of parenting or mothering or being a cancer patient, etc.  For me, I had to learn how to be a mother without breastfeeding and being in pain.  Breastfeeding is so much more than food; breastfeeding meant that I could physically address whatever was going on with my boys effectively.  I learned that through trial and error.  Adjusting to being a mother without nursing has been traumatic in so many different ways, but nearly two years after weaning, I can confidently say that I’ve learned new ways of mothering that are just as effective, just not as easy as sticking my breast into my boys’ mouths.

That’s a good picture of how things can change and the structure of a parenting relationship can change, but the underlying foundation is still there and is still strong and resilient.

However.

Each loss and each change brings with it unique trauma and adjustments.

Recently, I experienced another loss in my relationship with the boys.  I’ve dealt with being in pain for a while and sometimes I literally forget that I’m not as able to move well.  It “sounds” weird to say/write, but I do actually have times when I forget and react instinctively.  The recent “loss” that hit me pretty hard is to do with the physical interactions with the boys.

Two examples.

First of all, we took the training wheels off of the boys’ bikes over a recent weekend and they were practicing learning how to balance and ride their bikes without the safety net of the training wheels.  Their bikes are pretty low to the ground and they needed someone to hold on while they were practicing.  I discovered that despite my new found flexibility (thank you regular massages and lots of yoga) and less pain since my steroid shot last fall, that bending down and attempting to move quickly still sends lightening pain through my hips and down my legs.  After I tried a few adjustments that did not make it better, I had to settle for watching, applauding and cheering them on.  That’s important too, I know, but facing the loss of having to sit on the sidelines rather than being in the mix is humbling and sometimes shocking and leads to a fear that I’m lacking in some way.

Secondly, recently my youngest, a fearless three year old with no sense of his own limitations, decided that running out of a gate at the playground that had a road immediately outside of it was a good idea.  I didn’t think, I didn’t look around, I simply reacted.  I took off running at my top speed (not exactly fast) to grab him and ensure that he was out of danger.  Total mama-bear moment–nothing was getting in my way in my quest to ensure his safety.  Spoiler alert, he is fine, doesn’t even remember the incident and I experienced a good deal of extra pain for several days.

I did what I needed to do as a parent, but I’ve paid for it in pain.  Not unfamiliar pain, but pain that interferes with everything else.

I’m very well aware that parenting and mothering changes.  My relationship with the boys is probably stronger now that I spend so much more time with them and am able to focus on them now that I’m not as distracted.  However, I do ruminate on missing out, on not being able to be as physical with two active little boys, and how that makes me feel as a mother.  It sucks, big time.

At the same time, I know I’m a good mother.  I know that my boys are loved and nurtured and they are happy and supported in their authentic selves.  I know this because that is my focus, every single day, and they are surrounded by people who love them fiercely.  I am intentional about my relationship with the boys.  I’m not perfect and I definitely don’t succeed all the time, but I think I’m succeeding more often than not.

Yet …

I still grieve that I miss out on specific activities.

I still grieve that I can’t do what I want to do and that my kids want me to do.

I still grieve that terminal cancer has affected my relationship with my children.

I still grieve that my body doesn’t work the way I want it to.

I still grieve that I pay for movement later.

I still grieve that I have to plan so much more to be able to go to activities that I want to attend because I only have so much energy and only so many spoons available (check out the spoon theory of chronic pain if you haven’t heard of it before: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/).

Life can be frustrating and hard and excruciating and beautiful and amazing all at once.  Every day, I make myself get up and connect with my kids and EMBRACE all that we have together.  I still have some FOMO, but for my kids to remember me, I have to be in their lives now.  That’s what I’m going to keep doing for as long as I can.

Creating Lasting Memories

Ever since I knew that I have a terminal illness, I’ve been much more intentional about creating lasting memories with my boys.  They are currently five (5) and three (3), so I am quite well aware that their actual memories of me may not be all that vivid if my life expectancy follows the median of those with my disease (2-3 years is the median life expectancy).  One of the major ways I make sure that I will be visible in my boys’ memories is to take a lot of pictures.

Life isn’t perfect and I am often not happy about the way that I look in the pictures.  That used to mean that I didn’t post pictures or even take them and when I did, I’d carefully ensure that only the best were displayed.  Now, I take pictures all the time and I post and share pictures quite a bit.  I’m not at all narcissistic, I am intentionally making a record of the time that I have with my boys for them, for their future.  They will be able to look back and see all of the times we’ve had together.

When my dear friend, Jennifer Pace, posted information about an up and coming non-profit that schedules photo sessions for those of us with metastatic breast cancer, I jumped at the opportunity.  The photo session was nothing less than amazing and the pictures that came out of it are priceless.

I’ll post more on Facebook and all of the pictures, but I’ve tagged one of my favorites in this blog post.  Check out Joe Leone Photography and like 13th Hour on social media.  Joe and his sweet wife are traveling around Florida capturing poignant memories that cannot be replaced.