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,

More Candles

So I have a birthday coming up. I'll be 33. The part of me that still thinks the '90s were ten years ago thinks that this is really old. But in cancer years I think we'd all agree that this is very, very, very young.

Maybe for a year or two birthday drinks were fun. that quickly got old (ha) as I hit the wrong side of my mid-twenties. For a long time I couldn't stand the attention my birthday would bring; every year I felt the pressure of getting older and not having accomplished what I thought I should have by then. And though I adore my family and celebrations with them, I really would've preferred absolute minimal mention of the occasion. I'm weird. I deleted my birthday from Facebook so that I wouldn't get the obligatory messages from people who I only heard from once a year. After a couple years even most of my longtime girlfriends, whose birthdays we've all known since long before Facebook, seemed to lose track of it, and that was fine by me.

Then it became a thing where NOT making a big deal of my birthday became a bigger deal and that was... also weird. I had hoped that Milo might be born really close to my birthday so that his would henceforth forever overshadow mine, but the little Critter came three weeks early and botched that plan. Finally in the last year I felt like I had come to a place where I could be content with just enjoying the love I felt on my birthday, have no expectations for the day, and not let it be a reminder of what I hadn't done yet. I had my family, my precious little boy --my greatest accomplishment-- and looked forward to the handmade cards he would make or goofy little things he would pick out as a birthday present for mommy as he got older.

Then cancer happened.

In fact, it happened on Enrique's birthday; which I will never forget and still wish I could change so that it wouldn't always be something he remembers on his special day.

Now, and for the rest of my life, I'll be coveting my birthdays, collecting and hoarding them and anxiously awaiting the next one while simultaneously willing time to slow down. I'll be constantly looking forward to Milo's next birthday so that I can see him grow and count another year with him, while at the same time clinging to his little-ness. I'll be forever trying to make Enrique's birthdays special in an effort to make up for his 2016 birthday/my diagnosis day.

For the rest of my life, birthdays will mean something more. And I now understand more than ever why they are always worth celebrating, no matter how much I feel like I haven't done enough in the previous 365 days. Sometimes, just making it to another birthday is reason enough to celebrate.

I had an infusion appointment this year on my birthday and I am planning to bring cupcakes to the oncology offices. Their job is to make sure that all of us getting treated are able to celebrate many, many, many, many more birthdays and I can finally say that I am looking forward to each one to come.

Celebrate,

The C-word

So I've kind of put off writing and sharing this with the world, though some of you I've spoke to individually know a bit more about what's been going on. But I have words and pictures to spam you with for Milo's birthday in a couple days so I thought it was time to get this out of the way.

I haven't written about my current cancer fight in awhile and I guess you could say it was a bit of a mental play on my part --- if I waited until I had good news to share, it would be some kind of self-fulfilling prophecy or something, I could manifest the positive progress I was waiting for... Bear with me because this turned into a bit of a novel.

It also hurt to write about something so scary. I generally keep it pretty positive and for awhile we weren't sure how do-able that would be. Prior to starting my chemotherapy I had a PET-CT scan that would show if there had been any cancer activity besides the tumor we found in the biopsy --- and the results showed that it had in fact spread pretty aggressively. I will never forget sitting with the oncologist, next to my dad who was holding Milo, and hearing that the clinical terms to describe my condition included "metastatic," "incurable," "inoperable." How could this have gone unnoticed? How long has it been there? How quickly had it spread? How could my body, which created and grew and delivered and nourished the most perfect baby boy less that a year earlier, now betray me in the worst way?

The reality now is that I will live with this disease for the rest of my (long and fulfilling) life. It's already spread beyond its original location meaning that it could go anywhere and I'll be on-guard for that every single day. Given the current treatments available, I will continue to get an IV full of drugs every three weeks, indefinitely. The reality, pardon my language, is #fuckcancer.

But like I said, I didn't want to share all this bad news until I could follow it with better news. And, Praise God! there's been plenty of that --- I've had an incredibly easy time handling chemotherapy. It's weird how quickly it started to feel routine. The first day is the longest so they can deliver the drugs slowly and monitor your reactions each time,  so E and I binge-watched Mozart in the Jungle and it was actually almost like a nice day date, even though I stressed over leaving Critter for the longest I'd ever been apart from him. 

Since then I've finished my fourth cycle of chemo and I am still feeling fine overall; a bit of upset stomach here and there and sometimes tired but honestly not different than being-up-at-night-with-a-baby-tired. We also requested an MRI to determine if anything had spread to my brain (my oncologist said she didn't see any symptoms but I reminded her I hadn't had symptoms of ANYTHING other than a blocked milk duct), and that came back clear! And one thing that I'm extremely grateful for is that the genetic testing I did doesn't show any markers for known hereditary predisposition to this or other cancers --- so while they can't test for everything, there's nothing currently that shows my family is at any more significant risk than they were before.

"You Are My Favorite Reason To Never Give Up"
#hopsitalbathroomselfie

After the third round of chemo I was scheduled for anther PET-CT scan to see how things were going and determine if we were on the right course. I prayed so hard leading up to it --- that we would at least not get bad news; that any improvement would be a good thing. I prayed that the chemo was doing its job and that every healthy choice I made was making a difference in stopping the spread of this disease and in reversing its toll on my body. I prayed that I'd have the strength to face whatever the results were and that we and my doctors would be guided to the right decisions. My doctor told me beforehand she was optimistic, given my reactions so far, and I prayed she was right. The day after the scan her nurse called me. After my first scan the phone call was short, and they told me to come in that same afternoon to discuss the results. This time the phone call was short, and gave me the news I'd prayed to hear, "your scan shows significant improvement." Even though she couldn't provide more detail until my upcoming appointment, we had so much thanks and praise and were overjoyed with this good news. I celebrated with frozen yogurt --- previously something I would often eat multiple times a week --- for the first time in months.

We had my regular pre-chemotherapy appointment about a week later with my oncologist and we discussed the PET-CT results. She showed us the film taken which looks a bit like an x-ray, you can see the outlines of my body and the spots lit up on the screen, for lack of a better description, show the tumors and their activity --- the brighter the mass, the greater the size and more active (that's an overly generalized description but you get the idea). Anyways, you can see in comparing my scans from February and April that after three chemo cycles the primary tumor in the right breast and lymph node, that started it all, have gone down noticeably in size and activity.


She said that this is the case for the majority of my tumors --- about 95% of the lesions have reduced in size and activity. This is great news! Praise God! The stubborn one so far seems to be the bone lesion, but they can explore possible other treatments if it doesn't respond well by the end of the planned six cycles.

Working on channeling this "Crazy Sexy Cancer Survivor" mindset.
I can definitely do hard things. Also I keep adding more arm candy.

Have I mentioned that I can TOTALLY feel the good vibes from everyone?
Because I can.

She's encouraged that I still feel really good, and it's possible that they may add one or two additional chemotherapy cycles as we get to the end of what's already planned. However, there has to be a careful balance between using the medicine to shrink tumors and not hurting the body by giving it too much toxicity. From what we've learned, most patients can handle about six to eight cycles of these toxic chemotherapy drugs, and those cycles will typically provide the maximum effectiveness in shrinking the tumors.


At that point I will stop receiving docetaxel which is more toxic, but continue to receive pertuzumab and trastuzumab, which are highly specialized to target my particular type of breast cancer and are showing game-changing results in clinical studies. I'll continue to receive these every three weeks indefinitely, until cancer activity picks up again and starts to progress or some new therapy proves to more effective or some other significant change occurs. The goal here will be to keep the cancer stable and stop it from progressing any further. It's possible that I may still be a candidate for a mastectomy after the chemotherapy, so if you're the praying type, you can pray with us that the chemo reduces the cancer elsewhere in my body enough that they are confident that surgery would be effective; and that these two amazing new drugs stop any further cancer activity and do their job of keeping my body stable, healthy and functional.


The oncologist said that yes, the best case scenario at the end of my six chemotherapy cycles would be to see no evidence of disease and though complete remission is not likely at this stage, it IS possible... But if it's possible I don't see why it couldn't happen to me. In my prayers and thoughts I remind myself and God (I'm sure He doesn't need reminding) that no good would come of me getting any worse, but SO MUCH GOOD would come of me being an amazing success story.

My success would be a win for the fight against breast cancer --- it would show that these drugs and treatments are effective and rightfully the standard of care. It would show that changing your lifestyle to keep yourself naturally healthy as possible can only help in the cancer fight. It would show that faith and prayer and positivity and optimism aren't just catchphrases that get printed on pink tee-shirts but truly powerful and transformative weapons in the fight against this terrible disease. My success would be a step towards making metastatic cancer first a manageable chronic condition and soon curable. I can already hear my doctors or even doctors I've never met telling their patients decades from now, "we had a young lady with a pretty rotten prognosis but she fought like hell and now she's happily still enjoying life and cancer is just a small part of it." I remind myself that studies and data may show typical results and prognoses and such, but the simple fact that I have this diagnosis at this point in my life makes me not typical --- I expect great things of myself and that I can be someone whose success helps mark a turning point in treating and beating this disease.

I saw a quote recently from another young lady, currently fighting and living with advanced stage cervical cancer, who summed it up, "I have cancer, cancer doesn't have me." And like Stuart Scott said, "You beat cancer by how you live, why you live, and the manner in which you live." I have so much faith that God put me on earth to be Milo's mama and that he and I have so much more to do together and share with the world. This is an ongoing fight and the incredibly blessed life I have is worth every second of it.

Be assured I'll never stop fighting, 

Captured Light

One of the things that I hoped to do before chemotherapy treatments and such started was get a good family portrait. It might be shallow, but in case I don't look or feel like myself at some point for awhile, I wanted to capture this moment in our lives -- when Milo is at such a fun age, when we've settled into the role of parents (as much as anyone ever can), when E and I have been each other's best friend and partner for more than half our lifetimes already.

I would have been happy with a decent i-photo in the Target parking lot, as long as everyone was smiling, but we are blessed to know Geri at Reminisce Photography and Design. Reminisce took the gorgeous photos of our engagement and wedding, and the sweetest newborn pictures of Milo.

I told Geri that she's documented all the important "beginnings" in our lives, and done it so beautifully. She (and her family!) has such a kind and loving and generous heart and she somehow read my mind and approached me asking if she could take family pictures for us as we set out on this new journey.

We received her email with the images with perfect timing -- just after doing battle putting a teething, cranky Critter to bed -- so we definitely needed the smile that they brought. Not only did they bring a smile, but they reminded me how very blessed I am to be a wife and mama to these two amazing guys, and how much we have to look forward to together. My heart is full seeing the way that E and Milo look at each other, the way his chubby little hands grab our fingers, the way his entire faces smiles. Geri is a beautifully talented photographer who not only captured the sunlight filtering through the trees, but captured the Light from within.

Needless to say, we highly recommend Reminisce if you need a family photographer in the San Diego area.

Hope you don't mind a photo overload. #sorrynotsorry

A sorority sister who is a two-time breast cancer survivor told me recently that there are positive aspects to this journey and that I will find them. I believe her. Even though this is a trial and I hate the way it's hurting the people I love, I am seeing so much good in others. I feel so loved by the well-wishes in the form of texts, emails and messages... People have cooked and cleaned for us, babysat during my doctor's appointments, and offered everything from rides to the hospital to doctor referrals to assistance with insurance paperwork to donated breastmilk for Milo. I only hope that someday, in some small way, I'm able to adequately show appreciation for these acts that deepen my faith in humanity. Until then, I'm going to hold these two handsome gentlemen close and appreciate every moment -- even the crying, teething baby at 3:00am.

With love and light,

#HairChat

I can't speak for everyone, but among the first things I thought about as the news of a cancer diagnosis sank in was losing my hair. It's so shallow, I know. I promise my first thought was how long I'd be able to continue to give Milo breastmilk.

Anyways, there's so many types of treatments today and chemotherapy doesn't always mean that losing hair is inevitable, but with what I'll be given it looks like that's the case. So for a week--actually within the first couple of days--I've adjusted to the thought of losing this. I've never been one to cry over a haircut--I mean it grows back--but I have control issues in terms of I hate it when I can't control something, and this is beyond my control. There was something I could do though, and that was firing the first shot, so to speak. Bear with me through awkward selfies and glimpses of our horrible original 1970's bathroom.

Things actually worked out because I'd been wanting to cut my hair anyways and thought that hair loss would probably be easier with short hair. It was the longest it had ever been but my comfort zone is really not past my shoulders. It tangled so easily, took forever to dry, and was always in the way. "Mom buns" gave me a headache from being so heavy, so it was usually in a braid. I did get a terrible picture in Heidi braids, for posterity (I'd always wanted to have Heidi braids!).

...also apparently I have Bigfoot's hands..? (see bottom left)

And since it was for the first time in my life long enough, I wanted to take the opportunity to donate it. I've heard mixed things about whether or not Locks of Love and similar nonprofits can use colored hair for wigs or other efforts to benefit their organization, but my hairdresser said she'd take care of it and I figure I'll let them work it out when they receive it.

Julianne has cut and colored my hair for more than ten years!
Guess this will probs be my last visit for awhile,
though she did so sweetly offer to help me shop for a wig.
Can you believe we cut off an almost 12-inch ponytail?!

People have asked whether I'll use a wig or scarves or just rock a bare head and truthfully it's hard to say. I'd like to think I'd be confident enough to wear nothing or maybe a little scarf or cap... but I think I want a wig as an option. I wouldn't want to stick out or get attention or pity for this situation; and for example at my brother's wedding later this year, I want to look back at the family pictures and see the beautiful happy couple, not a reminder of going through treatments. My mind could change in the coming months, since I've never been through this before I guess I'll learn as I go!

I should have done this a long time ago!
My hair is so 'bleh' when it gets long and
feels ten pounds lighter and so much healthier shorter!
(Ignore the miles and miles of bags under my eyes!)

And knowing that many people have hair grow back differently that it was before chemotherapy I'm crossing my fingers that I'll get beachy waves with amazing natural highlights and none of these current random strands of grey!

It's only hair,

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,