Breathe In, Breathe Out

What a Year It has Been January 30, 2019

Filed under: IVF,My posts — elanaalfred @ 1:32 am
Tags: ,

One year ago today, on January 29, 2018, I found out I was pregnant from my first IVF cycle. Even at the time, it didn’t feel like an overwhelmingly special moment–maybe because I knew in my heart that it wasn’t going to last– but for some reason it’s been on my mind recently. In some ways it feels like it was yesterday, but for the most part, it feels like an eternity has passed.

 

Little did I know after losing that pregnancy, that what felt like an unbearable loss then, was only a sliver of the grief the rest of the year would bring me, especially the last couple of months. On October 29th the excitement we were feeling about a pregnancy from our fourth IVF cycle was shattered. Without getting into too many details, we had a second miscarriage. We were just under ten weeks, so still early, but this time there was a strong heartbeat at the first ultrasound, we had been told the chances of a healthy baby was 90%, and we had let ourselves get excited. We had told our immediate families, and everyone was elated. But by the next ultrasound, it was over–there was no heartbeat. There is no way to describe the heartache, emptiness, and loneliness, so I will leave it at that.

 

In the past couple of months I have spent a lot of time reflecting and processing this last ea photoyear. When I think about it, the rush of emotions is overwhelming. It was far and away the most challenging year for me, both physically and emotionally, but I have learned a lot–mostly about myself. I am usually not one to toot my own horn, but my biggest takeaway of this year was realizing and embracing my absolute resilience. To be fair, all women who endure fertility struggles in any way, shape, or form, are courageous and strong-willed. Simply put, we are badass.

 

The morning of that last ultrasound, I told Eamonn that if something goes wrong, I’m not sure I’d be able to function afterward. At the end of that appointment, I wasn’t sure how I was going to walk out of the doctor’s office, because I was frozen and numb. For days after, I wondered if I was ever going to stop crying. A week after my miscarriage, I was hysterical that something was wrong with me because I wasn’t bouncing back, I was still so sad and beat down. Eamonn and those closest to me had to remind me that it takes time, and that I was being a bit harsh, even unfair, to myself. I just wanted to feel like myself again. I missed me.

 

In the moment, it felt like it would be forever until the pain subsided. Yes, it was the sadness of losing a pregnancy, but it was also feeling the weight of the whole year’s experience. Afterall, this was my fourth IVF cycle–there had been a lot of hormones injected into me, a lot of blood drawn to test those hormones, way too many trips to the doctor’s office, long days and weeks of waiting on test results, plenty of uncertainty. Nothing was in my control, my lifestyle of exercising regularly and eating or drinking whatever I wanted was constantly falling by the wayside. If you’ve gone through it then you know, it was hard.

 

But guess what? I did bounce back. I walked out of that appointment, I started to function like a “normal” human being again, and eventually I did stop crying (I still have my moments!).In some ways I now feel better than ever. I feel more empowered because I know that it’s much harder to break me and my spirit than I had given myself credit for. I also don’t want to be misleading– I still have bad days, bad moments, and get caught up in bad thoughts occasionally. But I’m not as hard on myself because I know it’s part of the process.

 

Years down the road, when I am teaching my kid how to best handle hard situations, I hope I’ll think about this past year. While I am thrilled that 2018 is behind us, I don’t want to forget it. I want the experience to fuel me forward into whatever it is we have coming our way. It may not be a fairytale, but it’s my story and I’m becoming better for it.

 

 

Science vs. Spirituality September 17, 2018

Filed under: IVF,My posts — elanaalfred @ 10:37 pm
Tags: ,

I am a very proud Jewish woman.

I am not, however, deeply religious. In my opinion, and I don’t think I’m alone, the two do not have to go hand-in-hand. My Judaism is a big part of my identity–how I was raised, who I am today, who I want to become. But I do not attend synagogue regularly, we do not keep kosher, we do not observe Shabbat (though we would like to do more Friday night Shabbat dinners), and I have often questioned my belief in G-d.

 

With all that said, I am very spiritual. I may not believe in G-d in a traditional way, but I South Africa Thinkingstrongly believe that there is some sort of greater power and extra dimension of being. I like to believe that at our very essence we are souls who continue on even when our physical bodies have failed. I am comforted that those who I have lost in my life are somewhere, always in my presence, looking over me and my loved ones. I am at my most peaceful and calm state when I meditate and force my constant thoughts to rest even for a moment. I believe, in some way, that our lives are made up of people and moments that were given to us by fate. That belief in fate is what guides my spirituality.

 

On the flip side, I am completely in awe of, and grateful for, science and medicine. Eamonn’s life and my experiences over the past couple of years are dependent on continued advancement of research and knowledge to move science forward. For example, a few generations ago, someone with CF wasn’t expected to live beyond childhood. Now the life expectancy is 37 years and continues to rise. Without this kind of progress, I wouldn’t have my husband, nor the ability to make a family with him through IVF.

 

If we take out the emotional side, in vitro fertilization is fascinating. As we were starting the egg retrieval process, and we were given a tutorial of how it works, I sat there with my jaw wide open as the nurse explained to me in detail the many steps and directions. There is so much science and knowledge behind all of it, that for one of the injections, what they call the trigger shot, I was told the exact time to the minute that I had to take it. While many women trying to get pregnant think about their menstrual cycle and when the best time is to try to conceive, the timing is even more precise for IVF patients. The manipulation of our bodies to increase the chance of a pregnancy is beyond belief, and yet very real. So if science is controlling my ability to get pregnant, then where does my spirituality fit in the picture?

 

I do believe that both science and fate play simultaneous roles, though having been through now almost 10 months of trying to get pregnant, I tend to place more faith in science. There is a lot to balance while doing IVF– the drugs, the emotions, letting go of all control while trying to remain calm and sane. And with all of that, I struggle most with trying to find my right balance of being realistic based on the data, facts, and what science is telling me; with optimism, faith, and belief that what is supposed to happen will happen. With every failed cycle, my spirituality is dwindling and I struggle to maintain the hope that we so badly need through all of this.

 

I have to admit that one of the reasons I chose to share my story publicly was purely selfish. While my faith and spirituality is struggling right now, I’m counting on those around us to internally maintain their belief that the process will ultimately work for us. I don’t know what that looks like. For some it may come in the form of prayers, or hopes, or wishes, or yoga intentions or “good vibes”, but we need all the positive juju we can get! While you’re all working on that for us, I will make a promise to try to hold onto my optimism and faith as best as I can.

 

I’m Okay. August 30, 2018

Filed under: My posts — elanaalfred @ 8:37 pm

As my previous post mentioned, we were given the green light to start IVF six months after completion of radiation. In December 2017, Eamonn had a procedure to extract his sperm so half of our babies were frozen and ready to go. We wasted no time getting the other half.

 

At some point I will share more information as to why we are doing IVF and its link to CF, but that’s for another day. For now, I want to share our experience to-date starting in December 2017, without much detail but just to catch you up.

 

IVFIn December I started birth control. Yes, that’s right. I had never been on birth control before, but to start the process of making a baby I was on it for three weeks (it has to do with regulating my hormones and getting me on a schedule). The first cycle started with the egg retrieval and all that came with that. Long story short, they got 16 good lookin’ eggs from me, and I didn’t feel a thing (during the procedure)! Of those 16 eggs, 11 were fertilized with a sperm and all 11 made it to day 3. That’s a lot so we were quite thrilled.

 

Pause here for science–some patients are transferred (the day they put the embryo in your uterus, not implantation) on day 3, and some on day 5. It is the amount of days that the embryo has grown in the petri-dish and the doctor decides based on the full picture scenario what is best. Our embryos are day 3 transfers. Again, another time I can explain the why as far as I understand, but I don’t really think much about it.

 

Okay, back to us. Our first embryo was transferred on Saturday, January 13th. About two weeks later, on January 29th, we got a positive pregnancy test. Unfortunately, without getting into much detail right now, we had a miscarriage very early on. Needless to say, it was devastating.

 

To keep the story somewhat shorter, since that first IVF fresh cycle (the embryos were not frozen), we have had two more failed frozen cycles, with negative pregnancy tests. With each cycle, the routine of it has become more and more “comfortable” and familiar, but the emotions have never waned.

 

You know how almost every interaction starts with, “hey, how are you?”? Well for the past month, especially, I have dreaded that question. I hate lying, but I’m certainly not going to respond with, “well, since you asked, I can’t get pregnant and I’m heartbroken.” Instead, my best response is, “I’m okay,” because, I am okay.

 

The past 8 months have been hard. No, wood is hard. A penis gets hard. The past 8 months have been challenging, emotional, excruciating, and painful. But they have also been full of love. Eamonn and I have gotten even closer as a couple, and we are determined to build our family, including Rolo of course (for now he is loving being king of the castle). We are fully aware that when we do have a baby, it will be our little blessing and miracle, and we cannot wait.

 

Well, there it is in a very quick nutshell. I have so much more to share about the experience of IVF, the emotional side and the sciency side. What I want to say now though, is this– without our families, immediate and extended, and friends, we would be lost. I feel like I don’t say it enough and yet I sound like a broken record, we cannot possibly be surrounded by better people. We have not shared openly about this with too many people, but for those whom we have, thank you from the core of our beings.

 

I especially want to thank my “mentor,” you know who you are. I am extremely lucky to have someone very close in my life who has gone through her own IVF journey, who can relate to what I’m going through. She has been over-the-top present for both me and Eamonn, including meeting me at the hospital with me at 7am the day of my egg retrieval so that Eamonn could take Rolo to the vet because he was throwing up blood (it was quite the saga). I wouldn’t know what to do without her so thank you, thank you, thank you.

 

If you’re out there and going through a similar story, and want or need someone to talk to, I’m here. We all have to be here for each other.

 

I’m Back!

Filed under: My posts — elanaalfred @ 8:25 pm

HELLO Friends! It’s been a while, specifically since May 17, 2014.Erunnung


A lot has happened in the past four years, which you likely know if you follow me on social media but here’s a very quick recap:

  • In May 2014, we adopted our little fur baby, Rolo. He is the center of our universe.
  • In May 2015, I received my Masters in Public Administration from Northeastern University.
  • Eamonn received a double lung transplant on October 30, 2015!
  • In July 2016 we bought a house!
  • In February 2017 we had a fabulous vacation in Greece!
  • In May 2018, Eamonn received his Masters in Education Leadership from BC.
  • Together we have ran multiple races including 5ks, 10ks, a 10-miler, and a couple half marathons (mostly to Eamonn’s credit)
  • We welcomed 2 more nephews and 2 more nieces into our families (making a total of 14)!


We have most definitely had a fair share of fun, exciting, happy memories, but that’s not to say that there weren’t any bumps along the way. It’s taken me some time to process all that has happened in the past few years, and it is still a process, but I am ready to share more of our story.


In March 2017, I was diagnosed with stage 0, non-invasive breast cancer. It was a shocking moment but I was and will continue to be forever grateful that it was caught when it was. A lot of people ask how it was found so I’ll tell you, because it has a lot to do with why I’m starting to open up again.


In September 2015, I had my first mammogram to be extra sure that something I was feeling was nothing to be concerned about. All was fine. Fast forward to February 2017, at my regular annual check-up, my doctor felt a little something and wanted me to have another mammogram and ultrasound given the previous concerns. The results showed that there was growth of cells in one area in my right breast, so I had a follow-up appointment with a breast specialist and was going to have another mammogram in six months.


Simultaneously, in early March 2017, Eamonn and I had met with our fertility doctor, with whom we had actually met with for the first time in June 2015, with a plan to start IVF the following year (we will get back to this another time). The breast specialist saw that we had met with a fertility doctor just a couple days before I was meeting with her, and recommended that if there was any chance we could be pregnant in six months and not able to have a follow-up mammogram, then to have complete closure on all of this, I should have a biopsy to test the exact area of concern. On March 16th I had the biopsy, and on March 17th she called me with the results. All I can say is that when a doctor starts a conversation with “we have some very surprising news…you have stage 0 breast cancer,” you never forget it and it does change you.


In April 2017 I had a lumpectomy and in May I started my four weeks of radiation. Throughout the process, there was one major question looming over us, which was how long will we have to wait to start the fertility process. Part of the medical plan is that I have to go on tamoxifen for five years, during which I cannot be or get pregnant. It was to be determined if my oncologist was comfortable with me going through a pregnancy before starting to take it, or if she’d want me to be on it for a couple of years and hold off on our family planning. Needless to say, waiting for the team of doctors to make that decision gave me a lot of anxiety, but in the end they gave us the green light to start IVF six months after I completed radiation.


When Eamonn and I stopped to think about the series of events that had to take place when they did, we were so grateful because it could have turned into a lot worse. Our gratitude even extends to CF because without that, I would not be doing IVF to get pregnant, and there would not have been a red flag for my doctor to take extra precaution.


WHEW, okay, that was a long story. I hope I didn’t bore you.


This blog was originated to celebrate mine and Eamonn’s life together, with CF. Even after his transplant, CF is still a factor in our lives, it always will be, but it is not at the center of our universe, thank goodness. But if you did the math, the focus of our lives has shifted to trying to build our family, and I am choosing to share our experience with all of you.


I want to start off by saying that even as I write this, I am nervous and hesitant to share our story with the worldwide web. I am opening myself to a level of vulnerability of which I am unfamiliar. I know some of what I share may make some people uncomfortable but I really hope it doesn’t. At the end of the day, I am hoping that our story may be a lesson to some, a resource for others, and be a very small part of ending the stigma that comes with talking openly about fertility challenges that so many people experience.


Lastly but most importantly, I want to express my gratitude and love for Eamonn. We have been through a lot together in our eleven years as a couple, and you continue to amaze me as the human being that you are. My strength and resilience is because of you. Thank you for knowing what to say when or even nothing at all, for giving me hugs that make me feel safe when I feel like I’m drowning, and for loving me unconditionally even when my hormones turn me into a beast. You are what makes all of this so worth it. I love you an infinite amount.


With that, welcome to our family planning journey…

 

Lots of Love, and Forever Missed May 17, 2014

Filed under: My posts — elanaalfred @ 10:03 pm

I remember being taught as a young girl that the word “hate” was very strong, being encouraged to not use it describing how I feel about a person. I think that’s fair. But over the past number of weeks I have felt a lot of hate. It’s a feeling that I have never felt before, not toward a person, or even a thing.

 

I have spent some time writing and sharing stories about living with and being married to someone with CF. I try to be positive, optimistic, hopeful, and funny (not sure I’ve succeeded on this last one). Eamonn and I genuinely try to live our lives with these attitudes in defiance of a situation that would seem very bleak. But right now I feel hate because I deeply, passionately hate CF.

 

I very consciously have not shared much about Eamonn’s older sister, Kate, who also had CF, out of respect for her privacy. However, she was a big influence on how we have learned to cope with the disease and having it motivate us to really live, rather than dragging us down. Kate has been our brightly shining example of living rather than surviving.

 

KateI didn’t ever tell her this, but Kate was truly one of the best people I have known, and ever will know. I remember feeling intimidated the first time I met her because she and Eamonn were talking about Star Wars, quoting movies I had never heard of, and I knew right away that she was someone who I really wanted to like me—and not only because I loved her little brother. Her laugh was contagious. Her smile was the brightest thing in any room, and would only make you smile back. She defined what it meant to be a genuinely loving person. But most of all, she was one of Eamonn’s first role models as his older sister. They shared many bonds, one being that they both had CF. For most of his life, Kate was mainly a role model for how to live with exuberance and bring joy to others’ lives. As Eamonn got sicker, her role developed, and she taught him how to overcome challenges, not letting them keep him from living the way he wanted. Simply put, Kate was our hope.

 

I hate CF, and always will, but that hatred can only go so far. As much as I detest the disease I also know while it never defined Kate and Eamonn, it shaped them as human beings. It’s a part of what makes them such powerful, strong, courageous, and brave people. This world is a little less bright without Kate in it, and it’s hard to imagine our lives without her giggle, her random Facebook posts, her excitement for all things “mini,” and her endless positive spirit. But I know that despite her not being here, Kate’s influence on all of us will last forever.

 

May is CF awareness month. For the past 7 years, Eamonn and I have organized a team of family and friends to walk in the annual Great Strides Walk. This year, I cannot be there with my team, but they are still walking tomorrow! Please do your part in supporting the CF Foundation by joining team Rock-It-Lungs tomorrow, May 18th at Soldiers Field Road (sorry this is last minute), or donating to our team here.

 

But don’t just donate because Kate died, or that you hate CF—donate because you don’t want this disease taking one more incredible life.

 

A Milestone to Celebrate September 24, 2013

Filed under: My posts — elanaalfred @ 10:52 am
Tags: , , , , ,

Oh, hey! It’s been quite some time, hasn’t it?

I can’t think of a better reason for getting back to my writing than a celebration!

When you’re young, there is one day of the year that you typically look forward to the most, excluding Halloween. Your birthday! It’s everyone’s one day of the year that you feel the most special, maybe the most popular in the playground, and everyone wants to be nice to you. The best part about birthdays is that everyone gets to celebrate one when it’s his/her turn.

As you get older, birthday celebrations don’t feel as thrilling. I don’t know at what age it starts to happen, I’d imagine it’s different for everyone, but getting another year older starts to feel daunting, you’re no longer wishing the year would go by quickly so you can celebrate again because you know that the year will inevitably go by quicker than you can imagine, and now instead of bringing cupcakes to share with friends, you’re going to work on your birthday and unsure if anyone even knows that it is your birthday. I have just made birthdays sound super negative, when in fact they are not at all, even as the years go by.

Today is a really special day–it’s Eamonn’s 30th birthday! I have to admit that though I have only known Eamonn for 1/5 of his life, it seems very strange that he could already be 30. It is so true that the years really do fly by.

I met Eamonn just after his 24th birthday. Which means that his first birthday I celebrated with him was theEamonnin the wind big 2-5. I was so excited to plan a big bash for him—I invited all of his friends over for a party, I ordered his favorite dessert, key lime pie from Florida, and I bought him a pair of sneakers that I knew he was waiting to order for himself. It was a great way to kick off his 25th year. Now when I think back to that birthday, I would have absolutely celebrated in the same way, but I realized that I didn’t really appreciate and consider what it was that we were actually celebrating.

Birthdays should be a celebration of life. Since knowing Eamonn I have really taken to respect that more and more. Over the past six years, I have watched Eamonn survive his hardest days, taking each day in stride, and as much as he can, maintaining a positive attitude. Yes, the past couple of years have been nothing short of fantastic, with his health stabilizing and him generally feeling like himself, but that doesn’t change the fact that every day Eamonn has to work for his life. But every day he does it, without complaints.  In actuality, Eamonn celebrates life every day—by living his life, not necessarily one that he would have wished for, but the one that he has been given.

Friends, as you start to celebrate your milestone birthday (I know you’re all thinking that I have no right to talk because I’m not even 29) perhaps take time to reflect on how you want to celebrate life. You may not have everything you wanted by the time you turn 30, maybe not everything is as you imagined or expected, but I can guarantee that everyone who is reading this has at least one, and I would guess more, things to proud of, happy with, and that call for a celebration. As we all start to enter a new decade, don’t think as much about “Oh my goodness, how did I get here?” Think more about “Oh my goodness, I made it! I’m 30, and it’s going to be awesome!” Every day is precious, and birthdays can remind us of that. So, celebrate however you like, throw a huge party, travel somewhere new or somewhere old—but whatever you do, be excited you’re getting older. Celebrate what you do have and what you have achieved. And whatever it is that hasn’t met your expectations—go after it. And don’t forget to bring cupcakes to work—a year older doesn’t mean that nobody should know it’s your birthday!

 

A Walk To Remember July 1, 2013

I was quite content spending this weekend relaxing, and enjoying some quality time with Eamonn. I was happy to not wake up at 2:30am on Saturday morning, to get ready for what I only assumed would be the most physically challenging day of my life, thus far. I was happy to not be on my feet for 14 hours straight.

3:30am, and ready to go!

3:30am, and ready to go!

The Cystic Fibrosis Xtreme Hike 2013 was a 27.5-mile hike through parts of the Taconic Crest Trail, touching 3 states: Vermont (very briefly), Massachusetts, and New York. During the months of training leading up to June 22nd, we learned about the trail and some of its obstacles, but it’s only when you see it face-to-face that you actually begin to understand its fierceness. To give you an idea—the first two miles, beginning at 4am, in the dark, we ascended about 2000 ft. in elevation. Over the course of the 27.5 miles, we continued to ascend a total of over 8500 feet.  It might not sound intimidating but imagine looking ahead, to realize it appears to be straight up, already having hiked 16 miles. It wasn’t easy—but it was all kinds of awesome!

Last year, the first time it was brought to New England, I couldn’t do the hike. Honestly, I was quite relieved, because my dad had mentioned it to me and having a wedding that day was an easy out! This year, I didn’t have any excuses, and neither did my dad—though I think he conveniently forgot that he had contemplated doing it the year prior. So with some thought and consideration for the time we’d be devoting to training and fundraising, we decided to go for it. Our first training hike with other Xtreme hikers was in March, which kicked off 3 months of getting physically and mentally prepared—and we learned quickly that hiking was not the same as walking up Whisper Drive, or running down Beacon Street for a few miles. That initial hike kicked our butts, only to make us more determined.

The many training hikes I went on with my dad and fellow hikers, made the overall experience that much more worth it. Originally I signed-up for the hike to raise money for CF, but what I didn’t realize is how special doing

Mile 13?

Mile 13?

it with my dad would be. First of all, I want to thank him for being easily persuaded. But mostly I want to tell everyone how incredible he is—how many almost 65-year-olds can say that they just hiked 26 miles in one day? But it’s not just that—it’s that he trained so hard, he fundraised like he asked people for money for a living, all while loving every minute. And I got to be a part of it all. Dad, I couldn’t be a prouder daughter. You amaze me.

I also want to thank my mom and Eamonn. On so many Saturdays, you both rearranged your plans to accommodate our training schedule. When we didn’t know how long an 8-mile hike would take us, and we guessed at about 3 hours, and then took an actual 4.5 hours, you both just continued to support us and hope we got home safely. Thank you for your patience through all of it, and most of all thank you for being there on June 22nd. I wish I could explain how your presence, along with Abby’s and Ethan’s, kept me moving onward. Your motivation and positive spirits allowed me to believe in myself over the course of those 14 hours on the trail.

And now to all of you — thank you, thank you, thank you. My dad and I may have put our bodies through significant pain and stress, but it was your donations and generosity that will make the real difference in so many lives. My dad and I had a fundraising goal of $5,000 and thanks to all of you we raised approximately $7,000 to date. Including the money raised for the Great Strides walk, we have raised over $12,000 for continued CF research. CF is on the verge of finding a cure, and because of you I have absolute confidence that we will get there soon. I also want you all to know that during the hike, my dad and I each carried with us a print-out of all of the messages people wrote to us if they donated online. To know we had so many loved ones behind us every step of the way was, and always is, overwhelmingly invaluable.

Eamonn and Kate –I love you both (obviously in different ways!).  When all is said and done, I hiked for the two of you. It’s hard to not sound cliché or like a broken record, but you both inspire me in so many ways. The night before the hike someone reminded us that our experience was about “suffering”, and challenging ourselves in a way that we had never done. It was a reminder to not take our health and lives for granted. A reminder that we were hiking 27.5 miles for those that couldn’t. As we were getting ready to load the vans in the morning someone else saw my look of concern and doubt for what was to come, and asked me whom I was hiking for. I said “My husband and sister-in-law,” and all she said was “and that’s enough to get you through.” I didn’t believe her at the time, but during the 14-hours I found myself thinking of both of you (not creepily), and even a couple of times saying Eamonn’s name out loud. It really did get me through. You are both reminders of hope and positivity each and every day.

At 5am, after about an hour of hiking, watching the sunrise, I thought to myself, “This is awesome.” At about 2pm, after hiking already for about 10 hours, with what would be 4 hours to go, I thought to myself, “Why the hell am I doing this?” But I always knew why I was doing it, and it was unbelievably awesome (aside from the 6 painful blisters I acquired, and not being able to walk properly the next day!). I was told many times by veteran hikers that the experience would get under my skin and I’d be back next year, and I’d shrug and think, “I highly doubt that.” Now that I’m walking, not limping, and able to wear closed-toe shoes, I have to admit that I wouldn’t be surprised if I’m back on the trail next year! Thank you to all my fellow hikers who made the past few months so fun and unforgettable. All of us hiked for different reasons, we got to know one another by sharing our stories, and bonding over a disease that has affected all of us in some way or another, but enough to make us crazy enough to hike 27 miles together. I hope we can all continue to kick CF in the butt.