Positivi-tee: Don't Ignore Stage IV

So a year ago yesterday I got the news that I was diagnosed with breast cancer. Worst day of my life until two weeks later when we found out it was already metastatic, boy was that a doozy. I won't go into it (I've written about it here and here, if you want the longer explanation) but basically what a year, right? 

I didn't want to dwell on Diagnosis Day too much (especially since it's also Enrique's birthday and I'll forever hate having those two attached to each other) but I did feel like I needed to do SOMETHING. When I was first diagnosed I told myself and everyone else, "a year from now this will all be over," and while I could not have been more wrong, I also choose to believe that the hardest part is over. I choose to believe that the treatments in research and development as we speak are going to be successful and that they will have an amazing impact on my life and that of others fighting this terrible disease. I choose to believe that just around the corner is something coming that will save my life.

But I can't just sit back and wait. So to recognize my first year (like I keep saying, one year down, 50--or more!--to go) of thriving with metastatic breast cancer, I'd like to raise an awesome amount of money for METAvivor Research and Support Inc., an organization that specifically raises funds to research metastatic breast cancer. Breast Cancer Wellness Magazine has named METAvivor the 2016 National Breast Cancer Nonprofit of the Year, and in October 2016 METAvivor announced its participation in the Cancer Moonshot initiative, with a commitment to funding $1 million in metastasis research grants in 2017, and $2 million in 2018 – all focused on Stage IV metastatic breast cancer.

This area of research is sadly underfunded--only an estimated 2% of funds raised for breast cancer research study metastasis--and one that is vital to winning the fight against breast cancer. Selfishly, I truly believe that I myself will benefit from the life-saving treatments that result from Metavivor's research grants; but more than that, I believe that we can help ensure that no other family will know the pain of losing a loved one to breast cancer. 

I've started a habit of wearing "positivitees" to all my chemo treatments and tests; I feel like it creates good vibes and just gives me a little boost. Therefore it seemed fitting to spread the positivity with a tee shirt fundraiser (If you wish to donate to Metavivor directly without purchasing a shirt you may do so here.). I asked my sister-in-law Cindy to help me with the design; I knew she'd be perfect because she's not only a talented graphic designer but also the daughter of a breast cancer survivor... and simply kind, generous, and always up for a project! Thank you Cindy for the beautiful design and putting up with all my little "tweaks." My campaign is NOW LIVE and will run for the next three weeks! We need to sell a minimum of 11 shirts to ensure that they're printed and distributed. It's super-easy--visit the linky-link here to select a unisex, slim-fit or child's size tee, order online and it will be mailed directly to you in about five-six weeks (you can read FAQs about the fundraising platform, Bonfire.com, here).

The quote on this shirt is one that I've repeated often to myself throughout this year and will continue to hold dear as I move forward on this journey--I can't change what's already happened and my anger, sadness, fear and frustration with the situation won't make it any better; and as much as I try to control it I can't guarantee what the future holds. But I know that God made me strong, incredibly stubborn, and gave me the most amazing people to help me along this journey, and that, combined with science and prayer is a powerhouse. The arrow going through a diamond has several meanings--a single arrow traditionally represents protection from negative forces and that you want to move forward despite what hardship life might throw in your direction, and passing through the diamond symbolizes courage and success.

For months now I have been telling my young oncologist (I'm guessing she's around 40... with a PHD on top of her MD, what have I done with my life?) that she will treat me until she retires and then pass me along to some other young whippersnapper, and now she's telling me that's her goal, too! I absolutely believe that I can do this for 50 years, unless a cure comes along first! I've one year down, and I know that I've got at least 50 to go!! Please join me in raising funds for the groundbreaking research that will help win the fight against breast cancer! 

Thank you for ALL the support in the past year and going forward, 

#Instafail

I had the most Instagram-worthy weekend... and didn't post a single picture. Does that mean it didn't really happen?

Here's what did happen (with stunning filler pictures courtesy of Reminisce Photography and Design):

- Milo went to his first parade. So cute. La Mesa has a little Flag Day parade that goes through the old downtown area and "quaint" doesn't begin to describe it. He wasn't interested in much except eating the snacks I brought and waving the little flag with a pointy stick that someone gave him, but he sure did look cute. And my favorite part was watching him sit with his great-grandma and seeing her show him off to her neighbors.

- The proprietor of the gym we sat in front of to watch the parade (and yes an MMA gym looks totally out of place in front next to the antique shops and such but they seem to stay busy) took such an interest Milo. I know parents of kids with special needs have mixed feelings about this and some people unfortunately have had really bad experiences; but we've been blessed so far that when people ask about our experience with Down syndrome, it's with a polite and genuine interest. He asked when we found out about his diagnosis and if we were scared... he asked if we've started working with him on therapy and intervention early... he asked if he's been healthy and does he like to eat... And I like to think that our easy conversation and seeing such an awesome little dude living it up like any other baby helps bring a better awareness and understanding to the fact that our family is just as dysfunctional happy as any other.

- I went to Target and also spent time in my own house BY MYSELF. After the parade my grandparents told me to just leave Milo at their house while I ran errands since he was happily playing, so I had the luxury of a solo trip to Target and Trader Joe's, then went home to put the groceries away... I don't think I've been alone in our house for more than 20 minutes since he was born. It's neither good nor bad, just different. I've gotten so used to having my little companion around constantly.

- Our little Critter got his first cold. We made it through the entire first year without getting sick (thank you breastfeeding and good luck, I suppose) but the sleepless nights earlier in the week turned out to be the result of increasing stuffiness and congestion and a general feeling of puny-ness.... or at least we think that's why he barely slept for three days, who knows. Poor little guy, but we're all surviving.

- I had a girls' night; for the first time in forever (or at least since before Critter was born). My college roommate occasionally comes into town working on the Broadway San Diego shows and sometimes I'm lucky enough to watch them with her. We didn't get much time to catch up unfortunately but I did get to watch Newsies #seizetheday. Jackie has been a wonderful, supportive friend especially these last few months and is so encouraging that the light and positivity I'm striving to keep in my life is making a difference in this cancer fight.

- This handsome devil and I had an awesome date. For my birthday Enrique wanted to take me kayaking (we did it once like two years ago and fancied ourselves enthusiasts) and booked this super-cool tour of the caves in La Jolla. the vain part of me was a bit concerned --- had this been my pre-baby, pre-cancer self, I would've thrown on my bathing suit and put my hair in a ponytail and been ready to go, but now... "I can't get my wig wet... What if my filled-in eyebrows and eyelashes come off... A bathing suit looks weird because my right side is still gross..." Well, the fact that is was overcast and cold, necessitating everyone wearing wetsuit tops along with the required helmet actually took care of most of those concerns. Sure I still looked like a dork but at least everyone else did, too. And the water was warmer than the air. And we saw sea lions and paddled into a cave. And I stood up on the kayak and then fell in when E stood up behind me. And we paddled our hearts out like Pocahontas and had an amazing time. It's true that Vitamin Sea is a cure for many things. I've definitely been guilty of neglecting our relationship at times since Milo was born and our little adventure was a good reminder that the two of us need child-free time together now and then to focus on each other and the fun that the two of us have always had together.

As it turns out, yesterday, June 5th is recognized as National Cancer Survivors Day (which I actually found out through Instagram). You can imagine that this is kind of bittersweet when we are in the midst of treatment and have accepted the fact that my diagnosis means the fight will never truly go away. But like Enrique said when I shared this with him, "Cancer survivor day is everyday in this house."

Everyday that I have with this family of mine and these friends who support me and in this amazing world is a blessing. It's more important than ever to fill my days with purpose and intent --- maybe some days that means just the routine of being a mom and getting through the day with a demanding kiddo because I knew choosing to be a mom would include those days, and maybe some days that means paddling a kayak across the Pacific ocean because once in awhile we should say 'yes' to adventure, even if it's for just a few hours. Either way, I need to remember that any day spent with the people you love is more than just 'surviving,' it's 'thriving,' and I've been fortunate enough to do that every day.

So I don't have any elegantly staged and filtered pictures of the weekend to share with you, or even any candid shots of all the great #sothishappened moments, but I've got the memories, the suntan, the songs stuck in my head, and the general feeling of a weekend well-spent, and that's good enough for me.

#thriving,

makeover my soul

Name that movie quote.

I needed a change. Or rather, the blog did.

To be honest I really don't know what this little space should be. Or what it will be. I love the idea of it evolving into a legitimate job opportunity, the idea of being able to work from home around Critter's schedule (and my ever-growing list of doctor's appointments) but I'm the worst entrepreneur and wouldn't know where to start to make this into something that could be part or full-time. ANd I still don't know what I really want to write about. I'm not a "Mommy Blog" even though I have so much to say about my first year as a mom. This isn't a blog about breast cancer even though I've been pretty preoccupied by that lately. And it's not a blog about Down syndrome, even though I'm passionate about the community, or about crafting and DIY even though that's probably my only real hobby at this point.

I'm not sure where this is going and I guess that sounds a lot like the rest of my life at this point --- I have a good idea of what I want it to be and I don't know how I'm going to get there. I know a few things for sure --- I enjoy having a place to write and share and appreciate hearing feedback, if anything I write is ever helpful to someone then it's worth any amount of time and effort on my part, and I want this to be a reflection of my best self. So it was time for a bit of change.

"Paint by Number Dreams" to me was about things that were missing, colors needing to be filled in, just an outline that had so much promise but needed to color to be full and vivid. Metaphorically speaking, much of that happened when Milo came into our lives. As cliche as it is, becoming parents made our lives richer and more meaningful (and chaotic and challenging) than we could have imagined; and in particular, finding our footing in the special needs community has offered us so much that we may not have otherwise experienced. Milo is the promise that has been fulfilled and more than I will ever deserve.

"Day by Grace" is a better reflection of where I am now... Most days are good, some are really, really hard; and all of them are made full and possible with grace.

Over the past few years and especially the past few months, I've put my faith in the belief that God has a plan for me and us. I have to, otherwise none of the bad things that happen make any sense. I know many would say that bad things are just part of life because its not fair, but I believe that yes, bad things happen, but they serve some greater purpose or plan. We don't know what that is yet, but that's where the faith part comes in. None of us are perfect of deserving or capable of fully understanding it, but God has woven our lives together and we just have to trust that things will work out the way they're supposed to... 

image via Etsy

I'm not saying I believe that everything that happens is good or for the greater good, sometimes things happen that are just terrible and don't make sense and are beyond my ability to understand --- like a few weeks ago when my heart broke over reading about several other young moms who were diagnosed with cancer during their pregnancies and didn't make it more than a year. What good comes from that we will never know in this lifetime. 

But I do know that grace finds us at our lowest point and helps make it possible to move forward and try again another day. Sometimes that might be a "sign," sometimes it's someone you love offering a shoulder to cry on, maybe it's even giving into our sadness and frustration by binging on comfort food but only for awhile. God works in mysterious ways, right? Grace meets us where we are and leaves us in a better place. 

image via A Holy Experience

So I'm trying to make it day by day, by grace. And I'm trying to be grace for others and recognize it when others are the daily dose of grace in my life. I'm trying to appreciate more and be more present (as I play Raffi songs and hand snacks to Milo asking him to please give me ten minutes to finish this post). Most of all, I'm praying to live with grace and gratitude and to use those in whatever path life is taking me down, so that wherever it leads my heart will be full and I'll be confident in the love that surrounds me.

Full of Grace, 

More than we deserve

Happy World Down Syndrome Day! How incredible that there is an entire day dedicated to a worldwide celebration of the lives of individuals blessed that little something extra. 

March 21 is World Down Syndrome Day -- 3/21 for Trisomy 21, referring to the three copies of the 21st chromosome that individuals with Down syndrome have. Last week I delivered awareness ribbons to Milo's pediatrician, our OB-Gyn who cared for our pregnancy, the genetics counselor that delivered our diagnosis, Milo's "baby school" teachers, and others that have been supportive of us in our short time as parents, but really this extends to everyone who has been so wonderfully encouraging to us!

"Thank you for being a supportive part of our experience raising Milo! 

We are just getting started and are far from perfect, but we hope that 

when you meet a family adjusting to a T21 diagnosis, 

you'll remind them that Milo is loved, thriving and is 

more of a blessing to our family than we could have imagined!"

I've only shared bits and pieces of our experience with diagnosis. Down syndrome came into our lives suddenly, I suppose; or at least once things were in motion they moved quickly. We had an NT ultrasound at 14 weeks pregnant -- and what I still think is funny is that we almost didn't have it; we knew the results wouldn't change whether we continued but since it was covered by our insurance I scheduled it around work at the last minute. Before I'd even driven home from the appointment I got a call that we needed to come in and speak to a genetics specialist right away. A day later she explained that the ultrasound showed "soft markers" for a genetic abnormality, and could be one of three conditions-- Down Syndrome or two much rarer, almost certainly fatal trisomies. I took a blood test to find out more and we spent a week worrying about the possible results. All I could think was, 'what if my baby never gets to hear us say 'I love you'?' 

When we found out that the blood test showed a 90+% chance of Down Syndrome, it was a relief. Sure we would have challenges, sure there is a likelihood of health problems that could occur in his lifetime, and yes there is uncertainty---but nothing in life is certain, right? When it all comes down to it, everything is a leap of faith and we have to trust that God doesn't make mistakes and will provide the strength, comfort, people and resources we need to face anything. 

That's not to say that the entire journey has been easy-peasy and roses, either. I'll admit that in the week we waited for our blood test results I read credible and not-so-credible websites and too many Baby Center message boards; trying to figure out how common it was to have a false-positive result from an ultrasound. I even tried to measure the fluid in the ultrasound image we had, trying to determine if it was greater than the measurement that concerned the geneticist. 

My worry, if we did in fact have a child with Down syndrome, or something that would affect his health and development even more severely, was not that we would be able to love, connect with, and care for our child... we were doing that already. My concern was knowing that, with a diagnosis, this baby's life would be just a bit more challenging from the beginning... not just because it would likely take him longer to reach milestones, learn some things, or develop the life skills to be independent like his peers; but because the world at large would see him differently. We could raise this child to the best of our ability and he could grow up to be the absolute best version of himself, and there would still be some people who would never accept him, never see his life as having the same value as someone "typical," who would question why we continued with this journey at all. 

Well I'm learning more and more to block those people out (they're usually the ones commenting on Yahoo! articles anonymously); which is not too hard because the sound of others supporting Milo and families like ours is SO LOUD. All around the world, individuals, families, advocates, professionals in medicine, health, education and research, and others are SHOUTING THEIR WORTH. We are more alike than different and everyone's life has value -- everyone has something good to contribute to the world. 

And we've been thrilled to see that already, Milo brings out the best in people. We've been so supported and wrapped in love, prayers and strength since the moment we shared the news that we were expecting him. And now that he's been earthside for almost 11 months (!!!!!) he's charmed everyone he meets, challenged expectations about Down syndrome, and perhaps more than anything, reminded people that he's just a baby like any other. He will do things at his own pace and maybe differently than others, but he will do it with an army of support and love behind him. 

I should add that our positive outlook on Milo's endless opportunities and potential is in part due to the fact that there's never been a better time to be born with or living with Down syndrome. Our society has made huge strides in acceptance of and inclusion of individuals with Down syndrome and other disabilities -- there are more resources available to foster development, for education, including college, for inclusion in recreation with their peers, for learning workplace and independent living skills and eventually putting those into practice as adults with jobs who live on their own or with roommates and even partners. We expect that Milo will have many if not all of the opportunities that any "typical" child will have, should he choose to pursue them. This is only possible because of the dedicated, brave families who came before us to fight for the rights of their loved ones to be able to live life to the fullest and have the opportunities to pursue their greatest potential. This is a very special club that we have become members of -- and the best part is that anyone is welcome!!

Please, do remember our family and share our story far and wide to remind the world that Down syndrome is a blessing, not a burden. We never expected to find ourselves in this journey but are so grateful that God gave us more than we deserve. 💙


Chromosomally Blessed, 

I regret to inform you

I guess I only update this blog when I have big news over the last year. I swear I'm trying to get better at that; I've thought about it over the past 12 months and wanted to write, it just hasn't been a priority. Plus I feel like I don't have a "thing;" I could try being just another mommy blog, I could write about our Down syndrome experience but that's not my whole life, I don't cook or craft enough to make a DIY blog...  Just not sure where I fit in. But I digress.

gratuitous cute baby picture :)

So maybe you've noticed but there's a thing where PR/marketing types try to bury negative news on a Friday afternoon; with the hope that it goes relatively unnoticed over the weekend and disappears with the Monday news cycle. Look for this during the presidential campaigns.

Anyways, I wouldn't say I'm trying to bury this, necessarily, but I definitely regret having this news to share---some background (to skip over if you don't like breastfeeding talk):

Some of you know that I've exclusively pumped breastmilk for Milo since Day 1. This wasn't our first choice and we tried everything to get him to nurse, but it is what it is. Over the last 2-3 months I've been having some issues with pumping and as I hand-expressed, noticed what I thought was a blocked milk duct, and despite my best efforts it only got worse.

Several visits to the lactation consultant later, she and the Ob-Gyn referred me to Radiology to make sure it was just a blocked duct and not something to really worry about... An ultrasound quickly turned into a mammogram and biopsies, and 3 business days later (this past Tuesday) I was called by the Breast Care Coordinator confirming that they did find cancer.

This was unexpected and although there's never a "good time" to get this news, it's obviously not welcome when I've got such a little guy with such special needs to consider. I've already met with an oncologist and a surgeon, and following some diagnostic procedures it sounds like I will start 6 rounds of chemotherapy within the month, followed by a mastectomy this summer, and then hormone therapy. My family has been incredible but I would expect nothing less.

It's not my style to think that my health problems would be the center of anyone's universe and I don't like to be the center of attention, especially for something like this, but because I know I have such great and caring friends I will do my best to keep this updated for you and answer as many questions as I can. On a related note, because people have already started to ask, there's nothing special I need except your prayers, good vibes, loving thoughts, or just a nod to the heavens for successful treatment and healing. And I would ask that you keep Enrique and Milo in your prayers as well---E always tries to do too much and I don't want this experience to be too hard on him, and Milo is too young to understand but I want his little world to remain as familiar and comfortable and stable as possible. I worry for my family; I am so blessed to be loved by the greatest people and I know this is hurting them.

My guys.

As for me, I'm grateful for the miracles of modern medicine that are giving me the chance to fight this and recover my health, I'm grateful to have health insurance that is taking good care of me, I'm grateful for the endless support of my family and friends. And I'm inspired by countless others before me who have bravely fought this battle; there are so many who are living with cancer in their rearview mirror and I have every intention of doing the same.

Maybe there is actually something I can ask of you: don't brush off your health concerns and make sure that the people you love take care of themselves. Also, always be kind.

With so much love,

Fill Your Bucket

Have you filled your bucket today? If not, what's stopping you?

So we're all aware of the ALS #IceBucketChallenge. I've laughed at some of the more creative interpretations of it and shed a tear at some of the all-too-real testimonial from individuals actually living with ALS and seeing how it affects them and their families (I mentioned a couple in my #FiveGoodThings post). This campaign is pretty incredible.

That said, what it's really about it raising funds to help find treatments and a cure to improve the quality of life and longevity for those living with ALS. It's a terrifying and tragic disease that slowly takes away one's autonomy and independence. I remember being so touched the first time I read Tuesdays with Morrie and learning from someone who could accept this fate with such grace and dignity. So E and I will be making our own small contribution.

And I have to say I've been cringing a bit at seeing all this water dumped onto concrete patios and the like---we can't deny this drought! Thank you to those CA friends who completed the challenge standing on your brown grass ;) Not to mention that it's a reminder of how we take clean water for granted.... Although it's in much different ways than ALS, a lack of water has the power to strip away opportunities, dignity, health and independence.

So I'm also making a small contribution to Charity: Water in gratitude for my hot showers, drinking water, pool to swim in, and in hope that it can help change a community by improving health, sanitation, opportunities for girls to attend school, and for families to create an income. I really encourage you to learn more about the life-giving power of clean water here.

And really, water is life, right? It is fluid and constantly changing, it allows us to create and to fix mistakes and to grow food and support communities and to cleanse what needs cleaning. It's hard to think of a resource more life-affirming than water. I'm proud to be a small part in support of these great causes. Please consider donating if you can:

Donate Here!

Donate Here!

Ok, so enough soapbox on my part --- I accept the #IceBucketChallenge!

I don't know what the deal is with uploading a video,
but I tried all day with no success...
it is, however, on Facebook, Twitter and Instagram!

Count your blessings and fill your bucket,

#FiveGoodThings 8.15.14

So here is Week Two of #FiveGoodThings (see Week One here). I'm trying to do this each week to perpetuate the positive and remind myself (and others?) how much good and beauty there still is in the world, even if we have to look hard for it sometimes.

In other words,

this awesomeness via http://blog.justinablakeney.com/

What a week. There was a lot of crummy stuff happening. Some scary stuff. A migraine. A blown call at the plate against the Padres.

But there's always much to be thankful for; and this week that includes:

1. Celebrating My Mother-in-Law's Birthday - Happy, happy birthday to a very sweet woman who raised a beautiful family, including my wonderful husband. We don't get together as often as we should so it was nice to spend an afternoon just eating, catching up and I NAILED IT with the earrings I picked out for her. *Drops mic

2. Initiating Women with Purpose into the Alpha Gamma Delta Sisterhood - I've been really happy and proud to work with the young women of the Delta Eta Chapter of Alpha Gamma Delta at SDSU, and I'm so looking forward to their first immersion into Formal Recruitment and their first full year on campus. On Friday evening they initiated six women into the fraternity and are beginning their intensive preparations for the upcoming school year.

They're so cute and creative and enthusiastic
about establishing their legacy on this campus!

I think back to my own collegiate years and how this time could be exhausting but it's so fun and rewarding to work towards a common goal. These are great girls and I can't wait to see what this year has in store for them on the Mesa.

My own pics look so dorky and dated by comparison... but we had fun!

3. Doing Cute and Functional Things in Sister's Room - I upcycled my sister's former dorm desk into a vanity for her birthday, and last weekend we spent a ton of time cleaning out her closet and rearranging other stuff so that she can have a cool closet/vanity space and lots more room for her cute clothes, art and a space to do homework or projects. We also took an Ikea trip, a thrifting trip and have some cool DIY projects planned. It's not quite done so I hope to have some in-progress and 'after' pics, but here's a bit of a vision board I cooked up for her.

4. Finding the helpers - I was glued to the news and Twitter this week for updates on all the horrible things taking place there. I will say that it's still an evolving situation and we don't have all the facts. But it's scary that something like this can happen in America, where we've been taught to believe that our freedoms are protected and that we value civil discourse and due process.

But if you look for the good, you'll always find it. I will continue to pray for compassion, understanding, justice and peace to prevail.

5. Summer of '69 music - My sister and I took advantage of another free summer concert in the park last night -- and this one was a cover band playing Woodstock-era artists and a lot of Crosby, Stills and Nash. Totes up our alley. There was also great people-watching to be had and soooooo many cute dogs making us smile. Summer already feels like it's slipping away with everyone starting back to school and the days (barely) cooling off a bit and football getting going so I really love grasping as many of these summer nights that I can.


If I can find five good things to come out of a tumultuous week, so can you! What are your #FiveGoodThings?

Make it a good one and take care of each other,