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.

Medical Professionals

At last count, I have over a dozen doctors that I have open and active treatment with.  This does not include the entire medical team I had up in Orlando before we moved to Miami.  Going from seeing one doctor once per year (before cancer) and never having much of anything to say or write down on the registration paperwork to seeing multiple doctors each week and having to bring lists because the paperwork never has enough room to write everything has been a HUGE adjustment.

There are a lot of things I’d like to correct about the health care system, but this post is for the people I see every day in doctor’s offices and the things I’d think were common sense …

  1. Look the Patient in the Eye.  I realize this seems silly, but there’s nearly nothing more demeaning than demanding deeply personal information from someone while staring somewhere else.  This applies to everyone, from the clerk checking the patient in all the way to the doctor in the exam room. Having billed for my time for decades, I really do understand the need to document a visit/time, but to do that instead of looking the patient in the eye is the worst thing that could be done.
  2. Pronounce the patient’s name correctly or ask how.  My name is not Johnson, it’s Johnston. I can hear the difference.  If you don’t pronounce the patient’s name correctly, then apologize.  If the patient has a differently spelled name or you aren’t sure how to pronounce it, ask.  I have no problem answering this question, but if I correct someone and they insist they said it right the first time, that person has lost all credibility with me.
  3. Introduce Yourself.  There is truly nothing more confusing than being in a new medical office or hospital room and people one after the other come in and touch you, talk to you, ask you questions and you have no idea who they are.  Name tags help, but they aren’t always turned the right way to be read and I’m blind as a bat without my glasses.   As a patient, I need to know who you are and why you are touching me or asking questions, especially at night when I’m hospitalized.
  4. Read the file before you enter the room or ask a question.  I realize it is easier sometimes to ask a patient/client a question rather than dig for the information in the file.  As a patient, nothing loses my trust faster than to realize that the person sitting in front of me does not remember anything about me and/or doesn’t know anything about my file.  This means I then attempt to provide all of the information I think is important.  I’m not a medical professional so that probably means I will give lots of extra information that isn’t needed.  It would be so much faster and more efficient to at least glance at the file.
  5. Attempt to Empathize, but BE CAREFUL what you say.  Words matter.  Words matter deeply.  Saying “I know how you feel,” is NOT a good idea unless you have actually been in that person’s shoes.  It is impossible to understand how a terminal patient feels unless you are also a terminal patient and to be told that someone knows how I feel when that person is actually making me crazy is not helpful in the slightest.
  6. LISTEN.  I get that not all patients know what to say.  I get that we patients don’t speak in medical terms all the time.  I get that we patients tell medical professionals things that may seem irrelevant.  With all that being said, a patient needs to know that his/her medical professionals are listening, that our concerns mean something.  I have learned very quickly that different doctors/staff are listening for different things, that different doctors stay within their own specialty and I do my best to tailor what I’m saying; however, there is nothing more important in the doctor-patient relationship than the RELATIONSHIP.  To have one, both parties to the relationship have to listen to the other and that relationship includes all of the members of the office, not just the doctor.
  7. There is more going on than you can understand.  The intangibles of being a patient with a terminal disease are complicated and many.  A patient may be experiencing PTSD while just sitting in the waiting room. Waiting for the results of a scan can be impossible and heavy.  Realize that a patient not reacting well or not being “cooperative” is likely about so many more things than what another person can see.  Be kind and be flexible.
  8. Touch. There are more and more studies that demonstrate the power of touching another human being and how that affects both people involved internally and externally.  Suffice it to say, a gentle touch during an exam or discussion or encounter is powerful and should be utilized frequently when appropriate.
  9. Talk to and about the patient in front of you ONLY. I cannot emphasize this enough.  I’ve stopped keeping track of how often I hear commentary and information about other patients, sometimes very personal information.  Most often, it is the support staff complaining about a patient.  I’m sure I’ve been the subject of complaints a time or two.  Griping about work issues may be healthy in the appropriate context.  Where other patients can hear is not that.

I’m sure medical professionals have their own dos/don’ts for patients, but these are mine as a patient with a terminal illness that will require me to see and continue to see many doctors for the rest of my life.  Fair warning, I fill out every single survey I receive and I always include names.

When People Pretend

Since I was diagnosed with Stage IV Metastatic Breast Cancer in mid-2017, there have been two people that I followed closely on social media who were “outed” as not actually having the level of illness they had claimed. I’m not going to use their names in this blog post because this is about me sorting through my feelings about what has happened, not what happened to them or what they did. I don’t want to give anyone who has behaved badly more attention; at the same time, it is important to understand how this sort of thing affects the entire community.

We’ll call the first person “J” and the second “K.”

The first time it happened, I was floored. Literally flabbergasted, horrified, and completely blindsided. I’d invested myself and my energy in following the journey of “J,” a woman who posted about having to get cancer treatment while she was pregnant, a pregnancy that would likely kill her because she had to forego levels of treatment to protect her as yet unborn daughter. J talked about her advocacy efforts and the blood transfusions that were keeping her alive. She’d posted about having blood drives and all of the bucket list activities she was completing. I stalked her like I don’t usually stalk people online because I was invested in her experiences and I was so afraid for her.

Then, around the time she should have been giving birth, when I literally prayed for her and her daughter daily, J’s profile disappeared. I honestly thought she must have died and tried to search for her obituary. I didn’t find any notification of her death, just articles and information about how she’d been found out. That J was lying about being pregnant, about having cancer, and that this was a pattern of behavior that had repeated itself multiple times, at least the part about pretending to be pregnant.

I was devastated.

It literally affected me to such a deep point that I was a bit concerned. How could I have gotten so attached to this stranger, this person I’d never met? How could the betrayal feel so personal? What was going on with me that led me to be so invested in her experiences and the outcome?

It’s hard to articulate how devastating that first experience was and it led me to pulling back a bit, to not investing as much in the metastatic community because it scared me. It scared me how much I was identifying with a person who turned out to be scamming people for money. I know that a big part of why I was so focused on J was the part of her experiences that affected her child. That resonated with me, it pulled me in, because it has been such a HUGE part of my struggle to reconcile my own cancer diagnosis with being a mom; with how having a terminal diagnosis affects my children.

Inevitably, I engaged again, I started following the experiences of others more closely, but I confess that I’m more skeptical now. When something feels off, I look a little closer, and I have tried to protect myself a bit more. I’m not sure I’ve succeeded much, but that first experience gave me a lot of pause. So much pause that I confess to interrogating or perhaps cross examining people when stories don’t add up. I do try to keep myself under control, but this is a MAJOR trigger for me now.

Recently, another woman was outed, we’ll call her “K.” I’ve been aware of the concerns about her for longer than J. I wasn’t as personally invested in K’s experiences or the details, but this time, I was privy to more information earlier. I spoke with various people who had been directly affected by K’s behavior and tried to provide some legal guidance as to what could be done. The information was gathered and notes were compared before anyone went public.

And then the internet exploded.

Maybe that’s a bit of an exaggeration because people outside of the metastatic cancer community may not be aware as much about the issues or the affect on so many people; however, the affect on the people within this community has been profound. The same way I felt when J was outed was how so many people in the metastatic community felt when K was outed and they were vocal and MAD about it.

You see, both of these women preyed on people who could not really afford to help them. People within the metastatic and larger cancer communities gave more than they really could afford. When it came out that the recipients of this generosity was not being honest, were pretending to be in dire straits medically or in other ways, the feeling of betrayal and outrage was practically leaping off the page.

Another difference between these two experiences was that J, while often complaining about how she was treated by people who clearly knew something was up, K often displayed overtly aggressive and bullying behavior. Being a strong, outspoken, and direct person, I’ve gotten complaints over the years in a similar vein. I do think that certain personality traits can be misinterpreted as being aggressive and female behavior is labeled and addressed differently than a man’s.

However, in this instance, I’m not talking about just being strong, I’m talking about going over the line, to be unkind and calling names and behavior that becomes more than a misunderstanding. This is an important distinction.

I don’t pretend to understand either J or K. I don’t understand their motives. Living with a terminal diagnosis is awful. It is hard, it is heartbreaking and it is isolating. To voluntarily pursue that experience is baffling. I suppose that there is an element of attention, if you want it. It’s just not something I’d want to get attention for if I had a choice.

At the end of the day, I know intellectually that hurt people hurt people. I am well aware intellectually that mental illness or unresolved trauma or unmet needs can lead people to do things that look inexplicable from the outside. I’m not a mental health person and I can’t pretend to understand the why behind the behavior.

What I do know is that you can’t just say J/K (a/k/a Just Kidding) about something like this.

No person can co-opt the experiences of others and pretend to be a part of a courageous and often desperate group of men and women without consequences. Perhaps the legal cases will go nowhere. Maybe GoFundMe won’t ever require that people prove that they have the medical conditions that provide the basis of requests for funds. Maybe on this earth, J and K won’t be held accountable.

What I do know is that there will be a reckoning, maybe in this life, maybe in the next.

I’m a big believer in karma; that what you put into the universe will come back to you; what you sow, you will reap. Even though I would like to personally give both of these women (and anyone else who pretends to have cancer) a choice piece of my mind along with some choice language that I don’t often use, pretending to be something they are not will, in the end, hurt them the most.

These women deserve our pity, not our vitriol. The greatest revenge, after all, is to live well; to move on as if these people have had no affect. That is how we show them, and others, that their efforts to disrupt the supportive community, the encouragement we give each other daily will not bear fruit. You see, those of us who genuinely care, who push past the point of pain to offer encouragement and support even while we carry our own burden, we aren’t pretending, about having cancer or anything else.

Nameste.

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.

Feeling Fragile

Most days, I have sufficient energy to keep up with the boys, to attend my doctor’s appointments and to do the things that need to get done, to do the laundry and organize homework. Most days. I’m not at my former level of energy, but with judicious rest and a LOT of help, including the pharmaceutical and natural kinds, what needs to get done each day, gets done. Adjusting my expectations to what I can actually do without having to recover in bed for a day or two is something that is still an ongoing project. There are days that I forget where we are and why. Other days, it’s all I think about.

It’s hard to describe how odd it feels to get used to a routine, a “normal” that isn’t really all that normal. I’m thankful that my boys don’t seem to remember much about what our lives looked like before my diagnosis. They aren’t comparing, they just want their mama. Or “mom” as my youngest is now calling me.

I compare.

I compare myself now to myself before. Some days the former seems better, some days the latter.

Recently, after a pretty amazing Spring Break with my kiddos and some of my siblings and nieces, we came home. While Elliot and I were unpacking, I fell down. I’ve fallen a few times in my adult life (once while pregnant) and before cancer, I’d just gotten up and back into the routine of my day. This time, it was entirely different.

I was scared. Really freaking scared.

I scraped and banged up my left ankle and jarred my left knee. My left leg is generally and overall a complete mess. The amount of pain I was feeling made me think that perhaps I’d broken something or at least pulled or stretched something. After the fall, I called my doctor’s office and they told me to come, no need for an appointment.

This is who I am now. The person who calls her doctor and they say come now. The person who falls down at the age of 40 and actually thinks that a bone might have cracked because of the amount of pain said fall creates.

WHAT?!?

Part of my brain was halfway convinced that there was a mistake, that I should just ignore the pain and swelling and bruising. The rest of my brain knew that it was serious enough to call the doctor.

So, we went. Since it was still Spring Break, I showed up with both boys in tow until Elliot could join us. The nurses and doctors joked that I’d brought the whole team to help. Neither of the boys are freaked out by doctors or hospitals any longer since they come with me at times and they know I go regularly. A silver lining, maybe?

After an examination and xrays to be sure, my doctors told me that I had not broken anything (thank God) but that I had sprained ligaments in both my left knee and my left ankle. Since ligaments don’t have blood supply like muscles, they heal much slower. Since my tendons are already swollen all the time, thanks to the Letrozole I take daily to suppress any remaining estrogen in my body, I have more than the usual inflammation in my joints all the time.

The remedy–RICE. RICE stands for Rest Ice Compression and Elevation. Likely, for months.

MONTHS

Ligaments apparently heal very very very very slowly.

The good thing is that only specific movements tend to cause pain. Walking is actually not so bad, it’s stairs or sideways movements that cause me to see stars, to consider blacking out or throwing up. So very thankful for the chair lifts in our three story condo that, while moving a bit slowly, allow me to avoid walking up or down the flights of stairs at home.

This is my life now. I fall down and face adjustments to my daily routine for months.

I’ve been that fragile for probably years now.

Yet, the feeling of fragility hitting me squarely in the face is disconcerting. No, that’s not big enough, it’s overwhelming. Actually, it’s freaking awful. It’s a slap in the face and an unexpected bucket of water upended over my head. No one likes to have their mortality, their fragility to smack them in the face or their left leg, to be more precise.

Don’t mind me, just resting, icing, elevating and compressing my left leg today and feeling fragile.

Discharging Student Loans

Like millions of Americans, when I went to college, I had to take out loans.  My loans from undergrad were tiny, like less than $2,000.00 and I paid them off by working multiple jobs each summer and breaks.  However, law school was a very different story.  I still worked during the school year and worked more than one job during the summer, but I couldn’t keep up and carrying multiple jobs while taking law school classes was a bit more than I could handle all three years.  So, I graduated with a bit of debt.

Without knowing that I was incredibly blessed to be graduating from law school in 2002, I consolidated my federal student loans through one of the government programs for a very small interest rate (I think less than 3%) and then I had guaranteed payments for 30 years.  I was a little astonished that they would give me a consolidation loan as long as a mortgage, but I was happy with the level payment.

Over the years since I graduated, we’ve had the opportunity to pay more than that level payment I’d locked in or even to consolidate the student loans further into HELOCs or other debt, but that low interest rate deterred us from making that decision.

When I found out that I have a terminal illness in 2017, things changed. My disability income is helpful, but nowhere close to what I was making when I was running a law firm, so I started looking for options.  When someone posted a link in one of my support groups (https://studentaid.ed.gov/sa/repay-loans/forgiveness-cancellation) about discharging the debt for good, I was intrigued.

The process was pretty simple and took some time, but I got the letter after a few months acknowledging that my students loans are discharged. There are some caveats, like if I take out another educational government loan within the next three (3) years, the balance will become due again and I’m pretty sure I’ll be getting a 1099 at some point that will create a tax liability, but I’m still glad I did it.  Not only do we not have that monthly payment (albeit small) but it is one less thing my sweet husband will have to worry about paying through my estate when I pass.  I’m also happy that we never expended assets to pay it off while I was still working because those assets will now be there for my boys.

Terminal Cancer changes everything, but sometimes there is a silver lining, sometimes that diagnosis can be used for some good. I’m just happy to have found some!!

Hear My Voice Class 2019 @ Living Beyond Breast Cancer, some thoughts

Philadelphia is cold!!

It’s also a bit gloomy and the air is crisp and cool.

This Florida gal is freaking chilly.

Oooh, ships!!

Those were some of my internal thoughts upon landing in Philadelphia on Thursday afternoon. In light of the fact that I sprained my left knee AND ankle recently after a fall, I signed up for a wheelchair escort at the airport. I think I’m ALWAYS going to sign up for this–I got to go to the front of the line at security and a cheerful tour of the airport’s terminals as a bonus! A few funny looks since I know, I don’t look that sick, but no comments. I was ready to address any comments, though, and to educate as I could about the reality of living with Stage IV Metastatic Breast cancer. The only people I had the chance to talk with were the gate agents and the actual transporters. I suppose that will have to do.

Thursday: We had some time for sightseeing since the hotel is located a few blocks from some significant landmarks of American history. I wandered for a bit with some new friends and took pictures of the famous bell and other historical things. Honestly, the blooming cherry blossoms were the highlight for me. We lived near DC for a time when I was a child and I still remember the cherry blossoms blooming every Spring. Then, our first event of the weekend, the Hear My Voice class of 2019 welcome dinner. We got to hear from our mentors (graduates of previous classes), discuss some goals and fears and then we were released for the evening. I did see that some of our compatriots continued the party with some cocktails; my roomie and I went to bed!! Shout out to the LBBC staff who made the room assignments, you matched us up well.

Friday: Today was full of fellowship and training and laughter, some tears, and really great information. The Hear My Voice (HMV) class of 2019 is a diverse group of women from all over, all of us with varied life experiences and ages and from all over the country. Some of the statistics we discussed today were about us–more than half of the group of women assembled by LBBC were diagnosed de novo metastatic, meaning that we were Stage IV from the beginning; our ages range from mid-30s to the venerable 74 (our more experienced members had great insights and one is still on Ibrance after participating in the original trial!!). The resources and depth of support available to us through LBBC will jump start our advocacy efforts for the next nine (9) months and beyond. To me, one of the best parts of the training is that we’re organized into groups with a mentor, someone who has been not only through the HMV program but have also continued that advocacy beyond the requirements. We ended the day with a dinner with the newly arrived participants in the conference, which officially starts tomorrow along with some art therapy and blending our own essential oils. Can’t wait to use the energizing blend I made!

Saturday: The medical part of the conference started today. The doctors who spoke today gave us a good blend of the technical aspects of their work along with the way forward. The speaker at the opening session actually said during her opening spiel that she considers Stage IV metastatic breast cancer to be chronic. What the actual fuck?!? She went on to say that she apologized in advance if she offended anyone. Perhaps she had an inkling of the ripple of offense that spread through the audience.

In my own humble opinion, since chronic conditions mean that the person with the condition still live a normal life expectancy while managing their disease. Since the median life expectancy of those of us diagnosed with Stage IV metastatic breast cancer is still 2-3 years, that’s definitely not a “normal” life expectancy. I read a recent study that said those of us with bone only Mets can look at a ten (10) year life expectancy.

THAT MEANS I AM LOOKING AT EIGHT (8) MORE YEARS. EIGHT. That’s not a normal life expectancy for someone who just turned 40.

Metastatic Breast Cancer is NOT CHRONIC.

Ok, I feel a little better after including those capitalized words.

After an emotional day of learning and meeting other stage IV metastatic breast cancer patients, I participated in the second Die In since I’ve been diagnosed. The Die In concept and METup as an organization was born here, at an LBBC conference. The founders of METup were graduates of the same program I am here to complete. I’ve never felt as close to understanding the focus and the conclusions made by the founders of METup as I have this weekend. The experience this time was very different from my first Die in, but it was no less powerful.

After the Die in, I had the privilege of attending a screening of “Love Always, Mom,” a documentary made by a previous graduate of the Hear My Voice program about her journey to be a parent through surrogacy after living with Stage IV Metastatic Breast Cancer. I cried nearly the whole time. It was powerful. It was heartbreaking. It was perfect. I’m already plotting how we might be able to bring a screening to Miami!!

Through 2019, the movie will be available at private screenings and then I hear that it may be streaming through Amazon soon. You can be sure I’ll be sharing information about it as soon as I hear more!!

Sunday: It’s the last day of the conference. The morning was taken up with the logistics of what we’re doing next and how to accomplish it. My head and my heart are entirely full. We were asked today to use one word to describe how we felt about the conference and the Hear My Voice training. My word was “exhausted.” That’s not a dig or a knock on the weekend or the training, it’s just that being around so many people and being “on” for an entire weekend is hard for this introvert.

I’m extremely thankful to all of the staff at LBBC who participated in making the training successful and the CEO of Triage Cancer, Joanna Morales, for doing an amazing job of facilitating the training. Becky, in particular, worked very hard to accommodate my request for raw vegan food and I know that wasn’t easy!

Overall, I know that this weekend and the training has only enhanced the advocacy efforts I’ve started and also helped me focus on what is the most important efforts to focus on. I can’t be all things to all people. I’m not someone who will be palatable or approachable to everyone. I’m really ok with that. My strengths and weaknesses are different than so many others. I know that one of my strengths is that I’m not afraid to speak up, even if I’m not 100% correct. That may offend some people, despite my good intentions. I’m actually really ok with that because that is being true to who I am and the skills I’ve obtained in my life and work.

Now to head home to the warmth of Florida and hug my guys!