#NIAW

April 24th – 30th marks “National Infertility Awareness Week” or #NIAW.  This week basically serves as an opportunity to raise awareness for infertility and recognize it as a disease that affects thousands of women and couples worldwide.  One can find additional information regarding this movement on Resolve’s website – the National Infertility Association. You may wonder why I’m posting about #NIAW on a blog that was established to document my experiences with breast cancer.  You may also wonder why this blog has been silent for over 2 years now.

The truth is I am using NIAW as a way to ‘come out of the infertility closet.’  In a sense, my husband and I have been dealing with infertility since I finished chemo treatments or for the past 5 years or so.  In reality, we’ve been dealing with preparing for and undergoing multiple fertility treatments for the last 2.5 years – when I made the big decision to quit Tamoxifen.  Yes, you heard that right.  I quit Tamoxifen after 2 years 4 months.  I took my last Tamoxifen pill on November 30, 2013 and started to prepare my body for a potential pregnancy.  Some breast cancer patients/survivors may be falling off their chairs reading this.  Please be assured that I spoke to EVERY single one of my doctors before making this decision.  It was not an easy decision.  Please respect that it was my decision to make and I know what the potential consequences could be.  Honestly, I have no fear of recurrence at this point.

On the same day, I was diagnosed with breast cancer, I was also told that the treatments I needed to combat that disease would likely leave me unable to get pregnant on my own.  If you’ve read this blog before or know me personally, you may also know that we worked with some amazing docs to freeze embryos before I started chemo.  It was a whirlwind of craziness and I honestly do not remember every little detail.  I do know that I was quite naïve back then.  I felt that these embryos would ensure that we would have a biological family one day.  Now, we’re not so sure.

I have kept a running Word document journal of everything we’ve experienced over the last 2.5 years (as it relates to our fertility treatments/procedures).  The document is mainly just bullet points with dates and results, but it is LONG.  I’m not sure I have it in me to share every minute detail.

The Cliff Notes version…I personally feel that I have experienced more stress and complete sadness with my infertility journey than I ever did with my breast cancer diagnosis and treatments.  And I think I know why.  With my cancer treatments – I could see the end.  I truly believed that I would one day be cancer free and I just knew I had to get through one surgery, chemo and then radiation.  And I got through it.  With my infertility diagnosis and treatments – I cannot see the end.  There is also much more physical, emotional and financial stress associated with infertility treatments.   Unfortunately, there have been many times where we have let this process take over our lives – declining invites due to my crazy injection schedules, being super sneaky about what information we shared and with whom and opting out of multiple activities (races, fitness classes, nights out, etc) as I was often on bed rest and physical activity restrictions following each procedure.  If you’d like to catch a glimpse of the craziness, see my pic below.  I eventually had to create Excel spreadsheets to keep all of my medications straight.  It is not shown in the picture below, but there were times when I was up to four injections per day + oral meds (below was a light week – only 2 injections per day at the most).

Med Chart

We have had 4 unsuccessful frozen embryo transfers to date.  It has been recommended and we have chosen to only transfer 1 embryo each time.  After each transfer, we wait 2 weeks before going back to the doctor’s for a blood draw/pregnancy test.  In the infertility world, this is called the 2WW (2 week wait) and its dreadful.  There are so many emotions being tossed around during this time and with each additional failed transfer, it just became more likely to lose hope.  I have read about and tried everything imaginable to prepare my body in hopes of trying to make each transfer work.  Despite everything I have done or not done, we have still been unsuccessful in our endeavors to start a family.  And it is heartbreaking.  I have cried more in the past 2.5 years than I ever did with my cancer diagnosis and treatments.

We still have 3 embryos left and we are in the process of deciding what our next steps are.   I am not sharing this to make people feel sorry for us.  I am finally sharing our story because infertility is real and I no longer want to feel ashamed or embarrassed about it.    I am also sharing our story in hopes of connecting with other women who have been down the same path as me (women who have experienced infertility after cancer and hopefully successful pregnancies after cancer).  Through Resolve’s online community I did recently connect with another woman who has a similar history as mine.  It was so great to finally find someone out there just like me (we were both young when we were diagnosed with breast cancer, we underwent the same treatments, had frozen embryos before chemo and are now undergoing FET’s).

I am also sharing our story because I want others to realize that infertility affects A LOT of people.  Approximately 1 in 8 couples will experience infertility.  Most people usually don’t realize this because most couples undergoing fertility treatments do not share this information.  Well, now I’m officially out of the closet.  I’m ending this post here with some words of advice from a sensitive woman who’s suffered silently for the past few years.  Please remember that even the best intentions and curious questions can be hurtful…I want people to think twice before they ask a newlywed couple when they plan to start a family.  I want people to think long and hard before they ask the couple who has been married for almost 10 years (as we are) “what they’re waiting for” when referring to babies/family making.  I want people to stop telling couples to relax or go on a vacation and it will just happen.  News flash – my diagnosis is diminished ovarian reserve.  This means I’m at the bottom of my basket and I have NO eggs left.  I have no desire to waste my energy on hoping that if I go on vacation, it might just happen on its own.  And finally, I want people to think it over 10 million times before they ask me why don’t you “just” adopt.  Dealing with that last question deserves a whole other blog post in itself.  Adoption is a BIG decision and not one that should be taken lightly.

Posted in Fertility Preservation, Health & Well Being, infertility after cancer, Tamoxifen | Tagged , , , | 3 Comments

Anything Goes 2014

Happy New Year (belated)!  Its been four+ months since I’ve updated this blog.  Where to start?

I have declared 2014 as the year of relaxation and no plans for the Milam household.  The other night my husband posed two crazy questions/statements: 1. Are we having one or two kids?  2. The answer to question #1 would determine where/when we’ll purchase our retirement home!

I am really proud of how much time and effort my husband puts into our retirement investments (he spent several HOURS making spreadsheets and graphs the other day), but I seriously just need to get through the weekend and take a little time off from planning.

By this time last year, our 2013 calendar was filled with all kinds of activities and vacations (part of this was due to the fact that we had several out of town weddings).  In January 2013, I could open the calendar and seriously see things/events that were scheduled for each month throughout the end of the year.  Time to shift gears.  The past few weekends we’ve been having fun sleeping in and being lazy bums (sooooo unusual for me).  Bri calls it “Anything goes Saturdays.”  And since then I have adopted his term for the ENTIRE year – “Anything goes 2014.”  Let’s just go with the flow and see where this year takes us.  We’re still planning on actually doing fun things and spending time with family and friends, but its nice to kind of see what pops up each weekend and not always look so far ahead.

Health Related Updates Since Mid-September:  All of my follow-up doctor appointments went smoothly.  My annual mammogram and MRI were once again clear.  I celebrated 3 years cancer free on December 16th.   At each of my follow-up appointments, I discussed my intentions to stop Tamoxifen early to see if Brian and I can start a family (okay, so I have to admit that this part does involve a little planning).  All of my doctors are on board and support my decision.  I have one more doctor to meet with…I scheduled a ‘check-in’ appointment with my doctor at Reproductive Associates.  I am hoping that when the time comes that things will happen naturally.  But just in case I need to rely on our frozen embryos, I want to open up the lines of communication early and see what steps I should be taking (okay, you caught me – there’s a little more planning I’m doing, oops).

Overall, I really am trying to just sit back and relax.  I did not even write down one single goal for 2014 (although I do have one or two floating around in my head).  It is only January 25th, so we’ll see how long this mentality lasts!  Right now, I’m enjoying it!

Posted in Fertility Preservation, Friends, Family, & Fun, Health & Well Being, Tamoxifen | 1 Comment

The Plan or Non-Plan

As I may have mentioned in previous blog posts, I have made some serious personal decisions regarding my relationship with Tamoxifen. Ideally, I should commit to 5 years, but realistically I have decided on less.

A few weeks ago, I nervously met with my oncologist to discuss my official plan. I was bracing myself for frowns and/or words that I did not want to hear. Instead I was not only met with the full support of my decision, but complete understanding of the reasoning behind it. Once again, I was reaffirmed of how happy I am with the doctors that I chose to take care of me! Of course, my oncologist reviewed all the risks and statistics with me about my decision. The additional risk for me is really so minimal. When I say “risks”, I really mean the statistics that try to predict the likelihood of a reoccurrence for me. According to different test scores and the overall characteristics of my cancer, chemo was more beneficial to me than the Tamoxifen.

I am not disclosing my full plan on this blog. I have shared the specifics with a few individuals that are close to me (of course the husband, my BFF’s and mom), but I don’t want people constantly wondering or asking me if I’m pregnant yet. It is bad enough that strangers/acquaintances already ask me why I don’t have kids or what I’m waiting for (yes, people say this!).

I have set a date for when I will stop Tamoxifen. It is recommended that I wait 6 months after I stop Tamoxifen to try and start a family. And I still have to talk to my OB/GYN about removing this IUD (do I wait until after the 6 months are over?). So, know this – even if I stopped Tamoxifen tomorrow, I’d still have to wait a while.

The best part about all of this is that I feel really confident in the decisions that I made and the course that we have set. I am learning patience. I know that there may be many more obstacles once I go off of Tamoxifen (mainly revolving around fertility/infertility), but for now, its just one step at a time.

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Happy

I don’t know how else to explain it, but I think our wedding song describes the feeling perfectly.  Still happy 7 years later!

September 9, 2006

September 9, 2006

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2 Years Out!

Where has the time gone?  I have not posted much here recently because, honestly, I’ve just been living a “normal” life.

July 18, 2011 – Last radiation treatment.  2 whole years ago.

July 18, 2013 – I think this counts as one of my “cancerversaries” or “survivorersaries.” (I honestly have no idea how you spell those made up words).  The point is, I’ve crossed another milestone, celebrated another year and have just been going along doing typical Alexis things.  My marriage is solid, my friendships and family relationships are strong and I wake each morning feeling excited and encouraged about the future.  Really, what more could one ask for?  I didn’t plan it purposely, but today I am in Cape Cod with my husband, parents, uncle, cousin and her kids and my aunt who is also a BC survivor.  What a great way to celebrate my anniversary – surrounded by my loved ones in a beautiful location!

July 19, 2014 – The day that I will hopefully have the courage to follow through on.  No more tamoxifen!?!?  My ob/gyn and surgeon know about my intentions.  But I have yet to inform my oncologist.  I’m kinda scared – I haven’t even hinted to him about my thoughts.  I’m not sure if I’ll have the courage to tell him at my August appointment or not.  I might have to practice my speech.  I try not to think about the risks of this decision and instead I am seriously focusing on the positives when I’m free from tamoxifen.

I honestly don’t have too many health updates or concerns.  I’m really just trying to keep active and focus on having fun.  I ran three races this spring and really surprised myself with each one.  My husband and I ran the Cherry Blossom 10 miler with other family members in early April.  We both cut off about 3 minutes from our previous year’s race time.  In early May, I ran another half-marathon and cut off about 10 minutes from my previous half-marathon!  I also joined a new gym in early May and was the first woman finisher in my gym’s 5k with a time of 25:25.  These running accomplishments have definitely made me appreciate my ‘bad/slow’ runs.

It has also been quite a while since I’ve crossed anything off of my “Life List.”  With the assistance of my husband, I finally dusted off my mountain bike, filled the tires up with air and have been cruising around like a little kid.  I forgot how much fun biking is.  And I love when you can do something for fun and also count it as a workout.

Well, now that the bike is up and running, I’m trying to replace some of my running miles with biking miles.  My husband has recently taken ownership of his grandfather’s bike (imported from Detroit).  His bike is a heavy duty workman’s bike, but it looks so cool.  The large basket on his bike fits a pretty good sized cooler – so our biking adventures have also incorporated some pretty scenic and cool picnics.  And we have quite a few more fun adventures planned for this summer!  And yes, our bikes have traveled out to Cape Cod with us.

Basically, I’m happy to be happy and living life!

Picture from a June biking and picnic adventure in Chesapeake City, MD.

Picture from a June biking and picnic adventure in Chesapeake City, MD.

Random info – Every time I think about being done with breast cancer, I bust out singing (in my head) Beyonce’s “I’m a Survivor”.

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Would You Want to Know?

Would you want to know if you had a greater risk of developing a certain type of cancer and/or disease?  Or, if you were already diagnosed with cancer would you want to know if you had a greater risk of reoccurence?  Two and a half years ago, after my initial cancer diagnosis, my genetic counselor explained the BRCA1 and BRCA2 tests to me.  Heck yeah I wanted to know.  My test results definitely affected some of the treatment decisions I made.

So, ground breaking news today…The Supreme Court ruled that Myriad, the company responsible for developing the genetic tests, cannot actually patent human genes.  I see this as a victory for cancer patients.  Although I am greatful for the research that Myriad has done on these gene mutations, I do not feel that a company should be able to patent a human gene.  As Justice Clarence Thomas said:

“Myriad did not create anything. To be sure, it found an important and useful gene, but separating that gene from its surrounding genetic material is not an act of invention.”

I know this ruling might open up a can of worms regarding biotechnology research.  And I admit that I am no expert, but I’m curious how others feel regarding this ruling.  Even if you’re not a cancer patient/survivor – how do you feel about companies patenting and profiting from your genetic make-up?  Some might feel that business is business.  In playing devil’s advocate with myself, I wonder if this decision will have any (negative) impact on future R&D funding?

Posted in Health & Well Being, My Breast Cancer | Leave a comment

Overwhelmed by the Joy of Being Alive!

Here are some random shares from my world!

I am delighted when I can enter the online universe and find sites, news, blogs and stories that inspire me and capture my spirit.  So, I just thought I would share what I’ve encountered over the last few weeks in hopes that others might enjoy this too.

First off, has anyone seen Dove’s “Real Beauty” Sketches?  Please watch this video.  I had tears in my eyes.  It really brought me back to the time when I was bald and felt defeated.  I looked at myself in the mirror daily, but never really considered how others viewed me.

Moving on…As I was leaving for work the other morning and backing my car out of its parking spot, I heard this really loud ‘beeeeeeeeeeeeeep’ which stopped me dead in my tracks.   Before backing out, I had looked in my rearview mirror, then over my left shoulder, over my right shoulder and again to the left.  However, when I looked to the left the second time I noticed an unfamiliar van idling in the empty parking spots and it caught my attention.  So, in the time delay that occurred between my short fixation on the van and when I actually put my car in reverse , a car had driven down my street and I almost backed into it.  The driver (actually one of my neighbors) had every right to lay on her horn, but I was still irritated because it was a long horn beep.  I recently came across the “Live Sincerely Project.”     I encourage you to check it out as well.  Instead of getting all worked up over my neighbor’s car horn, I have decided that if I see her, I will sincerely apologize.  I am thankful our cars did not collide and I did not injure/hurt anyone.

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Just a funny picture I stumbled upon recently…kinda describes me perfectly!

Also, in the wake of the tragedy at the Boston Marathon, I’ll leave you with these snip-bits of inspiration.  I came across two other BC blog posts that also really affected me and made me stop and think. One, from Laura was quite simple and reminded me that “Life is Short.”   Some of my favorites from Laura’s post include: live your dream, share your passion, travel often.  These all are so so true!   Another blog post (make sure you have tissues handy) came via an email update and again reminded me that Life is Short.  I challenge you all to be “overwhelmed by the joy of being alive!”

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