That damn bikini...

About a year and a half ago, I took a photo of myself in a newly purchased bikini from J. Crew. I was getting ready for a lovely vacation in Hawaii (thanks, Chris, for getting married there), and I wanted to see just what I looked like before the whole world (read: a handful of people who honestly probably didn’t care what I looked like) saw me.

The result wasn’t terrible, but it wasn’t great either. More than anything though, I felt frustrated. I had tried on occasion since college to find a workout and stick to it, but I never really lasted more than a couple weeks. Though I hate to pin this frustration on being sick, my battle with getting back in shape has been one of the biggest challenges for me post-surgery and chemo.

Chemo taught me wonderful life lessons about appreciating my body and all that it can do. I sent an email out a few months after finishing chemo, around Easter, and included the following in my takeaways:

*Even if you think you're not the bravest or the strongest, trust that life will make you braver and stronger than you ever thought possible.

*I'm forgetting diets and counting calories. I intend to enjoy food. Enjoy being able to eat food that tastes good, that doesn't make you feel sick. If I get hit by a bus tomorrow, I don't want the last thing I think to be: "Damn I wish I had eaten that cheeseburger."

*Along the same lines, being skinny isn't all it's cracked up to be. If you want to be skinny ask your doctor for abdominal surgery followed by chemo. It makes the couple extra pounds afterwards seem not nearly as bad.

I snuck these in casually with other thoughts so that they probably didn’t seem like a big deal. After chemo, however, I took a very different approach to food than I had in the past, and so these takeaways were indeed pretty noteworthy, because I never actually believed them up until that point. Though I’m loathe to admit it, past food and exercise options included working out excessively, restricting what I ate a fair amount, (thankfully) a very brief attempt to see if diet pills worked, and (also thankfully only for a very brief time) throwing up on occasion after meals. I was never actually “good” enough at any of these habits for them to stick around for too long—I didn’t let them get to the point where they interfered too much with life, but these habits crept in on occasion when I was stressed. I also loved a yummy steak dinner with friends and family or a great meal at Taverna Tony’s in college, and I didn’t have the “strength” to push that great food away.

I walked away from chemo with a newfound appreciation for my body. Don’t get me wrong, I still felt frustrated at times or didn’t love the way I looked in things, but I reminded myself that my body had been reallllly good to me and perhaps I ought to return the favor. If my body could kick cancer’s butt, I shouldn’t push it to its limits in unnatural, unhealthy ways all to feel/look skinny. Sometimes this is easier said than done, but I will however say that I can proudly attest that none of those awful aforementioned habits have reared their heads since.

Back to the point of this post, though, that initial photo in the J. Crew bikini.

I had worked so hard to love my body and not to feel ashamed of it—and yet I felt so frustrated as I stood in front of the mirror and snapped that photo.

Frustrated by every time I had started to work out and realized that getting back in shape wasn’t going to be easy.

Frustrated that even though I was young when I was sick and was able to recover quickly, it didn’t mean I was going to bounce back physically in terms of exercise.

Frustrated that any strength I’d had in my arms and abs seemingly had disappeared after having an IV in one arm and having had pretty intensive surgery on my abdomen.

Frustrated that I waited so long to get back to working out that sometimes it felt like I never would.

And so while I have felt so damn proud of my body for all it has done for me, I have also felt so frustrated whenever I’ve tried to work out and realized that the strength I once had has faded.

To be 27 and have anxiety walking in to a workout class because I was worried I might not being able to do simple things was not easy to overcome. Amid all this were the consistent reminders from friends and family that I looked great—that I was thin and skinny. Words I’d heard before and didn’t believe I now (for the most part) trusted. I knew I wasn’t overweight, but I also knew what everyone else didn’t see: that this normal-sized body couldn’t do normal things.

The slow process of finding a workout began. 

I tried a couple barre classes, then yoga, then Pilates. All of them made my body ache, but each time I walked into a studio I felt a little less anxious and a little more brave—it took me a while to commit though. For about 4-5 months I took a couple classes each month, and then I decided that Pilates was the workout for me. I wasn’t limited by my horrible flexibility, and it targeted something I was very much so determined to get back: core strength. So in February I started signing up for more classes.

There’s no magic P90X story here—90 days later I was not ripped, and much the same way that my abs did not magically appear, my frustration did not magically disappear either.

But I decided to go all in.

In April, I knew I could commit to a boot camp which had been recommended to me by a friend. I took a private lesson and then signed up for that boot camp, 3 days a week for a month. It seemed manageable, but I also knew it would be super challenging.

It took me about 2.5 weeks to make it through class without stopping.

However, as I had learned (and even though I’d heard others say it before), no one in the studio judged me for stopping—and I didn’t get dirty looks for being the girl who wasn’t in as great of shape as everyone else. By my 3^rd and 4^th weeks, I, as the typical workout story goes, looked forward to class. I started signing up for other Pilates classes, and I was officially hooked.

Tomorrow will be nine years since I found out I had cancer. Nine years ago I didn’t realize I was headed down a path to being proud of my body for all it’s been through and not depriving it of the food it very much so deserves. This year has been a long time coming—a year where I’ve regained strength and also see a much stronger body in front of me.

I’m not about to post my before and after photo for anyone and everyone to see (text me, maybe I’ll be brave enough to share it; sorry, strangers and internet creepers ), but it’s kind of crazy. Today I put on a different bikini (one that actually in theory is less flattering) to compare my photos side by side. I weigh roughly the same I did when I started. I wear the same clothes. But I have abs. And a waist. And an even firmer belief that life will indeed make me stronger than I ever thought possible.

On that note, I don’t have much else to say to wrap this post neatly (let’s be real, it’s kind of a rambly mess anyway), so I’ll be over here drinking a glass of wine in that bikini celebrating nine years and feeling proud. Cheers.

♥a

Four years ago.

Four years ago I woke up to a call from my dad telling me my mom had passed away. I don’t really remember how I responded. I remember I didn’t cry. 

I emailed friends that morning (I actually was able to find it in my gmail—because I don’t remember doing this):

Hi everyone,

I just got off the phone with my dad, and I wanted to let you know that my mom passed away this morning at around 8 a.m. in Florida. Thank you for keeping her in your prayers! She was pretty awesome and definitely deserved them. :)

By the way, sorry for the awkward subject line...I wasn't sure the best title for this email. Other options seemed far too gloomy. :P

Sending you all love this morning and hoping your week, despite the not-so-happy email, is off to a great start.

Alex

I also emailed everyone at work to let them know, and then yes, I went to work. For whatever reason it seemed like a good idea at the time (and I’m still glad I went). I’m so grateful to Margarita for indulging me and letting me go. If I recall correctly, Maggie drove me to work; my hunch is I didn’t feel up to it. I remember Maryrose brought me an iced blended from Coffee Bean which was vital to my making it through the morning, and Yvonne gave me a giant hug, which despite the fact I thought I couldn’t handle hugs, I really needed at the time. To the best of my knowledge the day was pretty uneventful. I remember attempting to book a flight during lunch, looking up how to get a last-minute flight using airlines bereavement policies; I didn’t book my trip in that moment, because it felt so weird. To be flying home for a funeral. My mom’s funeral. I think that was also the first time I talked to Chris, during lunchtime. It’s kind of crazy how that day was such a blur.

At some point that day I was able to book a flight home, and here’s what I actually do remember. The next day, as I traveled home with my cute little pup in tow, some man had taken my seat on the airplane. He said he traded with someone else for my seat, and he needed to sit in the aisle seat for some reason or another. This was very perplexing to me as I attempted to explain that whoever traded with him actually was not in a position to trade the seat. As the seat was not his but rather mine. However this was futile. He seemed convinced he had fairly traded for my seat on the airplane. I then found the man who traded my seat. And, after quite a long conversation to determine where his seat was, I eventually made my way there. I had to stop myself on more than one occasion from saying, “Sir. Please. I’m flying home for a funeral. Please just give me back my seat.” With my little pup in tow, I finally made it home to Florida. Just for fun, though, Chloe decidedo escape her bag during the last 20 minutes of the flight. She must have been just as annoyed as I was to be traveling home for a funeral, and she probably figured she could express her frustration in a way I could not.

I remember when I finally got into Florida, Chloe stuck her head out the window and enjoyed the breeze as we drove home. 

I remember the house was oddly quiet without my mom there. 

And I remember the very next day I did some excellent retail therapy, and I didn’t look at my bank accounts until January 1^st. My mom would have approved.

The thing I can’t remember right now that is so confusing to me is when I cried. I must have. I know it happened. But when? Was the first time really when I read the eulogy? How on earth do I not remember?

I remember suggesting mimosas, and Chris pointing out that champagne might not be appropriate for a funeral.

I remember Chris and I had to go pick up a salad for after the funeral, and the woman at the grocery store just took a marker, drew a line through the bar code, and that meant it was free. Note to self: Bring sharpie on next grocery store visit.

I remember being showered with texts, emails, calls, flowers, cheesecake (!), and so much love. 

I remember feeling surrounded by so much love that it made me feel so overwhelmingly lucky during a not-so-happy time.

I remember we drank.

I remember I was supposed to do my first Walk to End ALZ that year. However I was home getting ready for a funeral instead.

I remember I started to realize I really wouldn’t get to see or talk to my mom ever again, and that pretty much sucked. 

When Chris told me I should write it and practice it, I remember being angry, because I didn’t want to think about it just yet, but my first draft ended up being my final draft anyway that night.

This isn’t one of those eloquently or wittily written recollections of a crazy time in my life. This is a scattering of memories. Something to help me not forget that day. That week. That really bizarre time in my life.

Four years ago. Wow. Mom, you are missed.

And, just for my own "fun," things I found while searching through my inbox:

A conversation with Brittany as she was prepping for her first day of school:

Brittany: well i'm glad to hear you sound pretty balanced

me: haha well we'll see but for now yes…as long as balance includes ice cream

A response to a friend’s question about services and plans for my mom’s funeral: “This weekend we'll just be hanging out, probably drinking…haha kidding, a little”

An email to myself with a shopping list: coated aspirin, beer

♥a

Reason to Hope, Round 1

A few weeks ago, I went on a first date.  It was the kind of first date that is both simultaneously funny and cringe-inducing, the kind you see in movies. The other day I was sharing this story with my aunt and cousins (cause it’s definitely not a story for my brother and dad!), and they could barely contain their laughter.  In that moment, I felt so grateful to stand in my aunt’s kitchen with such wonderful family members and enjoy a good laugh, even if it was at my own expense.  Yet, something was missing.

As I drove home that night, I couldn’t help but wish I was sharing those stories with my mom, in our kitchen. I wish I could have called her that night to tell her, “Mom, you will never believe what happened on this date I went on."  If there is anything I remember about my mom, it’s that while she might not have been the best cook in the world (though she did make a mean burnt toast), she made sure our family spent every dinner together, laughing and enjoying the company of the people we love.

Allow me to explain further.  When I was 15, my mom was diagnosed with early-onset Alzheimer’s at the age of 50. The once bold and fiercely independent woman I knew quickly became a stranger to me. My mom has always been known as a force to be reckoned with, and so it was very odd to watch her go through the initial stages of Alzheimer’s. At first it was the little things: she would forget to pick me up from school, or she would go to pick me up from school instead of work, and we once got lost on a drive home from the airport.

Then, when I was 16, one day my mom asked, “What’s your name again?” I don’t even remember what I said in response. As I think back to what my mom went through, there is much I feel I have forgotten, because Alzheimer’s just didn’t make sense to me at the time. I could process other diseases, but Alzheimer’s wreaked havoc on my family as we tried to figure out how to handle the loss of my mom in so many ways.

I do however distinctly remember the afternoon of my high school graduation. At this point, my mom had been battling Alzheimer’s for about 3 years. Just a few weeks before, my family and I had flown to North Carolina to see my brother graduate from college, and after my mom had made it through traveling and attending his graduation, it didn’t occur to us that much might change in a few weeks.

However, a few weeks of early-onset Alzheimer’s had a huge impact. The day of my graduation, my mom refused to get ready to go with us, insisting that the clothing my dad had laid out for her was for children and that he was trying to trick her. Just five minutes before my brother and I were about to leave to go by ourselves, my mom changed her mind and decided to join us. Fortunately, graduation was fairly uneventful, and on our way home, we decided to stop to get some dessert at Baker’s Square to celebrate that night. As we made our way to the table to sit down, my mom stopped and started yelling towards our table while looking at my dad: “I’m not going with him! He hits me! I am not going with him!”

A moment of uncomfortable silence followed as we decided what to do—I was ready to leave, but my aunt, my mom’s sister, kept insisting: “No, Alex, you deserve to be able to celebrate! We can have dessert! It’s okay!”
With Alzheimer’s and any life-threatening disease, there is this inclination to hold onto what is “normal.” When I was 19, I was diagnosed with cancer, and I remember trying to maintain normalcy as much as possible—so chemo would just be a blip in my life, not the definition of my life at the time. In the very same way, that night at graduation and all throughout my mom’s fight with Alzheimer’s, my family and I fought the battle of how to maintain “normalcy.” The night of graduation, normalcy was having dessert with my family, because if my mom could make it through dessert, then maybe things would be okay. We could do what “normal” families do.

However, there is nothing normal about what happened on the night of my graduation or what Alzheimer’s does to anyone. We didn’t have dessert that night—instead, I asserted that “This is my graduation, and I would really just love for us to go home,” because I hoped that that would calm my mom down. My family could feel the heat of the eyes of the restaurant guests on us as my mom continued to claim, “He hits me! He hits me!” and at the moment, all we could do was smile a little with tears in our eyes as we reassured my mom, “It’s okay. We’re going to home, and it will be okay.”

We went home. But, in just three years, Alzheimer’s had taken from my mom the ability to enjoy being with her family, to love life as she used to, and so it wasn’t okay. Instead, she feared the people who loved her the most. My parents would have celebrated their 43rd wedding anniversary this year, and my dad has always been head-over-heels in love with my mom. It might seem unthinkable that so many years of marriage and happiness can seemingly be erased, but for my mom, those memories were and instead she was very scared. She didn’t know what was going on—where she was, who she was with, and for about a year and a half, she actually was very angry, fighting back against the disease and as a result fighting back against those who took care of her.

In May of 2011 my mom was diagnosed with cancer, and just four months later, on September 29th, my dad called me and told me my mom had been having trouble breathing. The nurse from hospice said unless my mom were to take in more fluids, she would only be able to live for about 2.5 more weeks. Four days later, on October 3rd, at around 8 a.m., my mom passed away. After ten years battling, my mom finally got to rest.

My family, our friends, my dad, we all miss my mom immensely. As I wrote her eulogy and a speech to deliver at her memorial mass, I found myself reaching out to hear stories about my mom. I wish I could have known her better. However, as I said at the beginning, if there is anything I remember about my mom, it’s that she knew that life was best spent with the people you love and filled with laughter.

The Alzheimer’s Association makes it possible for those of us affected and impacted by this disease to have fun…to be with the people we love, to support them and show our love for them through events like the Walk and Blondes vs. Brunettes, and to get support ourselves through mentoring programs and support groups (and to laugh when it feels like all we want to do is cry). I am so grateful for the Association for that.

Being at these events is always extremely powerful and compelling to me. Not a day goes by that I don’t miss my mom or try to remember what it sounds like to hear her laugh. I still have moments when I want to call her and talk to her, and a week from today, I’ll celebrate her 64th birthday, wishing the circumstances were very very different, that my mom and I were swapping stories in the kitchen, instead of celebrating on my own.

No one should have to wonder, “When will he forget my name? When will she no longer be the person I know her to be? Will celebrating her birthday without her ever get any easier?” As my brother said, “Mom was an incredibly confident, smart, and talented woman who had all of that taken away from her without a chance to do anything about it.  I think if there's one thing that makes me feel like a fight against ALZ is important it is so that those that have those blessings like mom did don't lose them so easily.” I am sure everyone in this room can name more than one person whom life would be different without and not nearly as wonderful to enjoy without him/her by your side. 

By being here today, donating and supporting the Alzheimer’s Association, you are leading to a change for others diagnosed with Alzheimer's and driving towards raising the funding we need to find a cure, ensuring that the people who make our lives better, whom we’d like to do nothing more than sit, laugh, and enjoy life with are able to do so with us every day. There was no history of Alzheimer's in our family--we didn't know it was coming, and we couldn't do anything once it arrived. My brother and I know in the future it's possible we could hear the same diagnosis my mom did. However, we've committed to fighting against the same treatment plan and prognosis she had by donating and supporting the Alzheimer's Association, and I hope you’ll join us as well.  

Walk to End Alzheimer's Round 1: North Shore

Good morning, my name is Alex Magiera, and I am honored to be speaking here today. I'm a member of the junior board for the greater Illinois chapter of the ALZ association, and I also was a part of the Young Professionals Committee in Los Angeles, which is where I did my first walk 3 years ago. Each walk has held a very special place in my heart, and this one today is particularly special for a few reasons:

First, it's my first walk wearing this purple tutu. I recognize it's a bold choice, and I'm sticking with it even this early in the morning.

Second, I'll repeat what I said before in that I am truly honored to be standing and speaking in front of you today. Here's hoping I don't get rushed off the stage any time soon.

Third and perhaps what I have continued to be most aware of since I committed to speaking is that this is the first walk where I truly feel I'm "home." I grew up in Northbrook and Lake Forest, and I am lucky to be walking with members of my family for the first time today.

That said, there's one family member I wish could be here with me--and I simultaneously recognize that if she were here, I wouldn't have the same compelling reason to walk. That family member is my mom.

When I was 15, my mom was diagnosed with early-onset Alzheimer’s at the age of 50. The once bold and fiercely independent woman I knew quickly became a stranger to me. My mom has always been known as a force to be reckoned with, and so it was very odd to watch her go through the initial stages of Alzheimer’s. At first it was the little things: she would forget to pick me up from school, or she would go to pick me up from school instead of work, and we once got lost on a drive home from the airport.

Then, when I was 16, one day my mom asked, “What’s your name again?” I don’t even remember what I said in response. Even as I was writing what I would say today, there is much I feel I have forgotten, because Alzheimer’s just didn’t make sense to me at the time. I could process other diseases, but Alzheimer’s wreaked havoc on my family as we tried to figure out how to handle the loss of my mom in so many ways.

I still remember the afternoon of my high school graduation (in case you were wondering, I'm a Loyola Rambler...). At this point, my mom had been battling Alzheimer’s for about 3 years. Just a few weeks before, my family and I had flown to North Carolina to see my brother graduate from college, and after my mom had made it through traveling and attending his graduation, it didn’t occur to us that much might change in a few weeks.

However, a few weeks of early-onset Alzheimer’s had a huge impact. The day of my graduation, my mom refused to get ready to go with us, insisting that the clothing my dad had laid out for her was for children and that he was trying to trick her. Just five minutes before my brother and I were about to leave to go by ourselves, my mom changed her mind and decided to join us. Fortunately, graduation was fairly uneventful, and on our way home, we decided to stop to get some dessert at Baker's Square to celebrate that night. As we made our way to the table to sit down, my mom stopped and started yelling towards our table while looking at my dad: “I’m not going with him! He hits me! I am not going with him!”

A moment of uncomfortable silence followed as we decided what to do—I was ready to leave, but my aunt insisted: “No, Alex, you deserve to be able to celebrate! We can have dessert! It’s okay!”

With Alzheimer’s and any life-threatening disease, there is this inclination to hold onto what is “normal.” When I was 19, I was diagnosed with cancer, and I remember trying to maintain normalcy as much as possible—so chemo would just be a blip in my life, not the definition of my life at the time. In the very same way, that night at graduation and all throughout my mom’s fight with Alzheimer’s, my family and I fought the battle of how to maintain “normalcy.” The night of graduation, normalcy was having dessert with my family, because if my mom could make it through dessert, then maybe things would be okay. We could do what “normal” families do.

However, there is nothing normal about what happened that night or what Alzheimer’s does to anyone. We didn’t have dessert that night—instead, I asserted that “This is my graduation, and I would really just love for us to go home,” because I hoped that that would calm my mom down. My family could feel the heat of the eyes of the restaurant guests on us as my mom continued to claim, “He hits me! He hits me!” and at the moment, all we could do was smile a little with tears in our eyes as we reassured my mom, “It’s okay. We’re going to home, and it will be okay.”

We went home, but in just three years, Alzheimer’s had taken from my mom the ability to enjoy being with her family, to love life as she used to, and so it wasn’t okay. Instead, she feared the people who loved her the most. My parents would have celebrated their 40^th wedding anniversary the year after my mom passed away, and my dad has always been head-over-heels in love with my mom. It might seem unthinkable that so many years of marriage and happiness can seemingly be erased, but for my mom, those memories were and instead she was very scared. She didn’t know what was going on—where she was, who she was with, and for about a year and a half, she actually was very angry, fighting back against the disease and as a result fighting back against those who took care of her.

After my freshman year in college, my dad finally made the choice for my mom to live in a nursing home. Up until this point, my dad had taken care of her at home; we had a nurse who came nearly every day to help my dad, and though he once said he would never put a hospital bed in our house, my mom had her very own bed in their room. I have never before witnessed or known the kind of love my dad showed for my mom. It absolutely broke his heart for her not to be at home with him, and he scheduled his days around her. My dad is 13 years older than my mom, and he always envisioned growing old with her…with her taking care of him, instead of the other way around. I speak with my dad everyday, and at that time, his daily schedule either consisted of things to do “before I go visit your mom” or “after I go visit your mom.” Even when he was taking me to chemo daily and making sure I was okay, he would make time to go see her once I was home from the hospital and resting.

My dad finally made the choice to have my mom come back home with him after two years of her being in a nursing home--she had her own room in our house, with a hospital bed and a lift, and a hospice nurse who regularly visited her. My dad always speaks about the joy he experienced just being able to have breakfast with her, to see her face, to see her smile even though she didn’t know who he was. He loved to be able to say goodnight to her, and when he woke up, he loved to get to see her right away.

The year my mom passed away, we found out my mom had cancer. I remember sharing this news with my best friend who to this day also calls my mom “Mom.” She asked me: “Alex, so what happens? Is there surgery? Chemo? What’s the treatment?” …and my heart sunk. I nearly broke down as I explained to her: “Megan, she’s 'do not resuscitate'. We’re not going to treat it, and it’s not going to go away. I’m so sorry.” 

Just a few years before I'd told Megan that I was the one who had cancer, and I immediately was able to say, "...but here's the treatment. Here's how I'm going to get better!" And if my mom had not been DNR, yes perhaps we might have attempted to treat it, but the reality is, even if the cancer went away, even if the treatment worked, she still had Alzheimer's, there is no way to cure or even slow Alzheimer's, and that's unacceptable.

My brother, dad, and I had been fearing and anticipating this moment for years, and so the news of her illness and knowing what was ahead, albeit scary, was not unforeseen. However, for some of our friends and family, it was, and it was very difficult for them.

On September 29^th 2011 just four months after my dad told me my mom had cancer, he called me and told me my mom had been having trouble breathing. He also told me the nurse from hospice said unless my mom were to take in more fluids, she would only be able to live for about 2.5 more weeks. Four days later, on October 3^rd at around 8 am, my mom passed away. After ten years battling, my mom finally got to rest.

I can't change the fact that my mom isn't here today, and I can't help but be glad that after her brave fight she's no longer in pain or scared. That said, I refuse to accept that her fight is over--I just think I've got to do some fighting of my own, and one way I choose to fight is by walking and raising money and awareness for Alzheimer's research and treatment. So really, why do I fight? Why do I walk each year?

Well, I walk in honor and memory of my mom; I'm here with my mom's sister and my cousins, and it breaks my heart that my cousins never really got to know my mom. It breaks my heart that I didn't.

I walk because I don't want to have to walk for my friends and I don't want them to have to walk for me. I don't want to forget the people I love and care about, and I don't want them to forget me either.

I walk because I'd like to see a survivor flower at future walks. There is something so sobering about being at these walks. I feel energized as I meet other people who are as committed to eliminating Alzheimer's as I am, but I wish we didn't even have to think about Alzheimer's as a threat. The only way we're going to get there is if we continue to raise money and awareness of just what the disease does.

So before I actually do get rushed off the stage...I'd just like to thank you all for being here today and listening to me share my story. It's an honor to be here with you, to walk with you, to know we're fighting this together, and the only way I could imagine today being better is if my mom was wearing a matching tutu and walking with me.

If you'd like to donate or join my team for next week's walk, you can do so here.

♥a