The last sunset…

A Facebook memory popped up today. This is not unusual, of course, but they typically involve pictures of Jacob. They always make my heart swell, as he continues to grow so much each day. Today’s reminder was different though and it made me pause.

In 2012, Joe & I spent New Year’s Eve at the beach. We enjoyed dinner, a glass of wine and a walk down the beach at sunset. I have always been anxious to be off the roads early on a night like tonight. The picture was of us, smiling broadly, the beach behind us. The very last sunset of 2012 going down in front of our eyes. 

This year, we unintentionally did the same thing. Jacob woke up with a bit of a cold so we changed our plans. We ventured to the beach, enjoyed appetizers at the same restaurant and visited the beach. The sunset in front of us, closing down on 2016.

The amount of things that have changed in 4 short – or long – years is astounding. The restaurant itself went through a massive renovation and was closed for months last year. It was more of a hole-in-the-wall then than now but still just as good. The ocean has remained constant, with its waves crashing loudly, though I can just imagine what has changed beneath the surface. The sunset is equally as gorgeous and glowed brightly against the blue sky as the sun lowered itself down.

Then there is us. My mom joined us this year, which is the first time in over a decade that I’ve spent this night with her. I’ve gained and lost a few pounds over the years and the lines on my face have deepened with age, stress and tears – of laughter and sadness. I’ve been through many hairstyles – straight, long and bald.

We didn’t have the blessing of Jacob back then and little did we know, a year later I’d be proudly holding my belly as we watched the ball drop…struggling to stay awake.

I started a new job since then. Though the same company that I’ve been with, it has been both rewarding and challenging as I learn new things.

We bought a new-used car and our parents (my inlaws) bought a boat to keep us all busy and enjoy the water.

We have traveled to the Caribbean to celebrate my big sisters 30th birthday, visited Georgia countless times to visit my baby sister and her husband, had multiple trips to my hometown for visits with the people we love and trips around Florida to visit friends and local parks.

Life is relatively the same in terms of where we live and yet it is so very different. It’s hard to imagine life before cancer and even harder to remember life before Jacob. Our routines are so different than they were back then and our priorities are very, uniquely different.

We have made more new friends than we can count and though we lost touch with a few, we all found our way back to each other over the last year.

I have rediscovered my faith in God. Though I never lost in entirely, it has strengthened exponentially and I remain steadfast in my faith and love for our Lord.

Though the sunset is similar, the years between are memorable for so many reasons. Our blessings are unique and huge. We are loved by so many and love hard in return.

As this year comes to a close, remember all the moments – big & small – that you are so incredibly blessed with. This year comes to a brilliant end while 2017 lingers, waiting anxiously in the distance.

Happy New Year, everyone. I hope this year is filled with love, laughter and overwhelmingly wonderful memories. Keep spreading the love, my friends. Now & always.

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The night before Christmas…

Growing up, my grandparents had a barn on their property. I have no idea what they originally used it for (anyone?) but it became the place that we gathered for Christmas. My grandparents on my momma’s side had eleven children. Add in their significant others and a few dozen (50ish?!) grandkids and Christmas became a rather large event. There was never a discussion about what to do or where to go – we always gathered at my grandparent’s barn.

The grandkids were all gifted wooden stools with their names engraved and a burlap sack. We all brought our stools to sit on while opening gifts. My grandma always arranged a gift exchange between the grandkids and one for the adults. One of my uncles would dress up as Santa and handed out gifts.

The sacks were filled to the very top with gifts from my grandparents. Each grandkid collected something that my grandma decided when we were born. My collection was brass and my sack was always loaded up with different types of brass, mostly antiques, that I would display on a huge shelf in my room and play with all the time.

The gift exchange was no joke. We would sit on our stools for hours while the presents that spread across half of the barn slowly grew smaller as our collection around us grew bigger. There were tons of laughs, lots of hugs and some of the most amazing memories. I would usually fall asleep in the car on the way home, believing whole-heartedly that I could hear Santa’s bells ringing high above.

Since moving to Florida, we spend Christmas Eve with Joe’s family. Though the setting is different and the family is smaller, the love and laughter is there. My cheeks hurt tonight from smiling so big and laughing so hard. We enjoy a fabulous meal of Italian food prepared by Joe’s mom, indulge in cannolis and share gifts that we thought hard about giving each other. We even have a tradition of giving out a bag of coal to one person each year based on something silly or funny that they did that year.

Tonight was no different with the exception of my momma joining in on the fun. I have been enjoying this past week with her here but this is the first Christmas that we have spent together in well over a decade. Having her here and buying matching jammies means so much to me.

And then there’s Jacob. Every age I say “this is the best!” but this age…oh, how I love it. He is truly becoming his own little person, talking and asking questions and learning more and more. He has been counting the “sleeps” until Christmas & Santa and he even left out cookies (cooooo-kkkeeess), milk and a carrot tonight. 

One of his gifts tonight from grandma and grandpa was a pair of binoculars. Although he enjoyed his other gifts, these went around his neck and he didn’t let go. He played with them all night and even looked for Santa in the car on the way home. When snuggling in bed tonight, his excitement was palpable. He looked at me and said, “Momma, I look for Santa?” Sure, love bug. He lifts up the binoculars and looks through the half window above the curtains. “Santa, where are yoooouuuuuuu….hohoho (deeper voice)…Oh! I shink he’s ouside.”  I am fairly certain we did that routine for about 45 minutes (and one potty trip!) before he looked at me, kissed me and said “I go to seep so Santa comes” and rolled over. Oh, be still my heart.

This Christmas is special, like all others. But it’s filled with more love, laughter and snuggles than I know how to contain. I can’t help but smile ear to ear as my mom, Joe and I sit by the light of Jacob’s little Christmas tree.

Merry Christmas to all of you. May you each be gifted the blessing of love and happiness this holiday season and always. Spread the love!

Keep spreading…

During my appointment last week, my blood was drawn and my tumor markers were taken.  They typically take a few days and I looked online for the results this past Saturday.  They are elevated, above the normal range.  For me, this has been an indicator of progression.  When they were up previously, it took a few cycles of Xeloda for them to go back down to the normal range.  I watched them decline a bit each time until they were normal.  I recently took a break from Xeloda of almost a month from mid-October to early November.  My hope is that my tumor markers are actually on the decline again, assuming they rose during the break, and that restarting Xeloda is helping to bring them back down.  This is my second week of my second cycle since restarting.

Is this update concerning?  Yes.  Is it scary?  Of course.  Do I wonder what this means?  Absolutely.

But…

There is nothing I can do for now.  I had obviously hoped that I would have a break, which I may still, but I also may not.  I have planned scans next week and blood work, including my tumor markers, the following week.  So there is quite literally nothing that I can do right now.  I am still looking into alternative options (essential oils, detoxing and looking into a doctor that specializes in alternative treatments), while I also know that there are clinical trials and standard treatment options available to me.

So, what does all this mean?  Well for now…nothing.  I saw the results, I feel the same physically and I already have a path forward to find out whether or not there is progression.

Well actually, I can tell you what this means for me.  It means that I keep living my life.  I keep working, I keep decorating for the holidays, I keep shopping and planning out gifts, I keep making plans, I keep loving on my family and friends, I keep snuggling my sweet boys and above all…I keep spreading the love.

Yes, life is stressful.  Yes, there is always fear of the future.  But I am continuously shown love from my family and friends.  I am so incredibly blessed.

And that, my friends, is what matters.  Spreading that love, accepting that joy and embracing all that each and every day has to offer.  That is what makes this life so magical, so wonderful.

Keep on spreading that love, my friends.  Every bit of it matters…promise.

MD Anderson

I’ve never seen such a massive center. Having visited quite a few cancer centers in the last few months, I’ve seen my fair share of buildings. This one was massive. I was in the Mays Clinic building and at one point, I had to walk to the main building. I used the sky bridge – which takes you over traffic outside – and I kid-you-not, it took me at least 10 minutes just to walk the bridge. There’s even a shuttle to take you across! It was very nice. Anyway…

I liked this doctor a lot. A young gentleman with a toddler himself, he enjoyed chatting with Jacob and was very candid with me. I enjoy candid when it comes to cancer. I need it. 

We talked about my visits with the different centers, which he very much supports, and he said something that I thought very highly of. When I mentioned what the other the centers had said (clinical trials are the way to go), I also stated that I did not make a decision yet because they are the number one cancer hospital. He looked me in the eye and said that it isn’t the center and status so much as the trials available. Are the trials something to get excited about? Then go for it.

So they do have one trial (potentially two) for me. It is an immunotherapy trial (I am very certain it’s the same trial that Sloan wanted to test me for but I put that on hold). It is “promising” but not exciting, in his words. The other trial is not quite as promising for me (PARP indicator, which is a targeted therapy, currently used on BRCA positive patients, but may work on TN without that mutation) but an option nonetheless. Immunotherapy is showing great promise in other cancers but hasn’t had significant progress with breast cancer yet. This trial is still in its early stages (Phase 1) and because I am triple negative, immunotherapy has the potential to work for me.

I expressed my hesitation with a Phase 1 trial (still determining dose toxicity, side effects, etc) and he agreed but said not to be deterred simply because it’s a P1 trial. Most times, they have been proven to work in other cancers and they have reason to believe that it would work on the one being tested on (in this case, triple negative breast cancer). So it is not necessarily a first on humans drug (though that is certainly a question to ask). This particular drug also pays a small travel related expense, which I understand to be extremely rare. It’s also weekly chemo initially, so relocation would be likely…assuming a strong response (big assumption and hope there!). It also is worth mentioning that trials provide access to drugs that are not FDA approved. So if they are in a trial, there is reason to believe that they are “good” drugs with the potential to target cancer. I wouldn’t have access to these drugs if I did not participate in a trial. There is also the potential that the drug would not work, which would be a risk and a reason to stop a trial. Regular blood work, scans and doctor/research coordinator visits are required aside from actual treatment. Trials are labor-intensive.

The doctor also mentioned that I should  not have started Xeloda if I want to get on a trial soon (I do) because of the wash out period. He also said that he would not have necessarily stopped Xeloda when I did because of skin progression. Yes, it’s progressing and a systemic therapy is required, however it is not likely 100% progression and since it is working great internally, he likely would have kept me on it longer. Interesting, right?

Side note – I am staying on it for now, until I know what trial that I want and what the wash out period is. This will also give me time to prepare for wherever the trial is located.

The doctor had a lot of great advice and comments. One thing that makes me incredibly joyful is that he said I am in the infancy of my treatment regimen. He rattled off many standard of care treatments for my cancer and said that any of those are all viable options when I am ready (aside from trials). I cannot express how happy I am to hear that. I had thought that my standard treatments were only 2 IV chemo after trials and am so relieved to know that I have many options left. Many of those are IV chemo, however they are there and ready when I am.

We talked at length about quality of life. I don’t talk about it a lot here, however it is a conversation had at home often and something that doesn’t leave my mind. Many of these trials have unknown side effects (particularly P1), as well as the potential for significant travel expense. In his words, this is not something to go bankrupt for and the quality of life gained from continued treatment is important to recognize.

Going through chemo initially last year, I had obvious down days (weeks, really). I fought through to enjoy the good weeks. After surgery, life slowly returned to a relative normal while I got used to long term side effects. As I continue down this path of life-long treatment, I am beginning to recognize my new self. It’s harder to get up from bed, often a sit to get my head straight and stretch my body so it doesn’t ache is required. Stairs make me more tired and winded than ever before. Joe helps me up when I squat or sit at Jacob’s level. I’m tired most often. I am still healing from radiation and the pain that I have from the open wound is not like anything I have felt before. It hurts, continuously, and often keeps me up on nights like this. My feet ache more often than I would like and I have stomach pains after most meals that sometimes require me to sit still until they go away. I don’t share these side effects because I want to make a spectacle. I am simply sharing my new normal. Things that didn’t bother me before but sneak  up on me now, whether because of treatment or metastatic disease. The idea of quality of life is very real to me and I understand why he feels the discussion must be had. There may come a point when treatment becomes worse than the reward.

So for now, I will embrace my sore feet and aching body and continue on with life. I will enjoy these days that I am blessed with and not roll my eyes and push off the tiny hand that is covering half my neck (along with the little body snuggled up against me in slumber).

This visit was informative and I am glad that it was possible. I am meeting with the clinical trial team at Emory on Tuesday as well. Since we were headed there for Thanksgiving, we are going a day early to meet with them and discuss trials. The doctor at MD Anderson is anxious to hear what trials I may qualify for there as well. I plan to share with him what I learn and look forward to his honest assessment and recommendation, as well as the doctor’s at Emory who I very much liked as well. 

I know there is more to share somewhere in my head but that’s all I can think of for now. Saturday we head to visit Waco, which I am crazy excited about. Who doesn’t love Fixer Upper?!

Making Strides…

Some breast cancer fighters don’t like walks. And that’s ok. Last year when I did the Making Strides walk, I was still fighting this disease and anxious to be cured. This year, I debated on going. I wasn’t sure if I should because they celebrate survivors and I’m not sure how I feel about that. And I debated because I tire easily and it’s a long walk on my feet.

As I thought about it more, I remembered how much I enjoyed the company of fellow fighters, survivors and those who support us because they love us. I remember the tears that I fought back at being surrounded by thousands of people that are there in support of a cure.  And those memories of the people who stood by my side. That’s why I went. To feel pride that I fight to survive every day. And that people near and far support me – in so many ways.

It was an early morning that resulted in us forgetting to bring a stroller. That’s right, we are totally the family with a toddler that forgot a stroller for a 5k. Oops! Thankfully were able to share with Jacob’s BFF from the womb. They both wanted to walk most of the way anyway, so it worked out well! Plus they love copying each other. 😉

It was a wonderful day filled with love and support. Friends traveled to walk by our side and we had the chance to hug friends that we didn’t expect to see. I am so incredibly glad that we went and walked. Though my feet need a serious rest, it was absolutely worth the laughter, fun and memories that were made today.

A little straight…

When I was pregnant, I traveled to NY for my NY baby shower and it happened to be my birthday weekend. My sisters gifted me money for a new hair straightener that I had been eyeing. I was super excited and purchased it immediately (gotta love 2 day shipping on amazon!). It worked amazing and I used it constantly. 

After I shaved my head last year, I offered it to my sisters since I had no use of it for a while. They all responded with a “No way! You’ll need it soon enough!” It’s been sitting patiently in a drawer awaiting the day my hair would be long enough. 

Today, I braved the straightener. My hair went a little crazy in the process (rightfully, it wasn’t really sure what was happening) and I thought for sure a headband would be needed with all its craziness. To my surprise it all calmed down and although short, it’s settled in nicely! I’m excited for a bit more versatility in my hair styles now. I don’t know how long it’ll last (eventually IV chemo will be needed) but I’m totally enjoying it in the meantime.

My feet are sore today after all the walking this weekend (totally worth it!). I think the sand at the beach dried them out a bit and made them a little more sore too. I’m rocking my Sanuk’s today though so the extra cushion helps. I’ve always purchased my Sanuk’s at Ross, the discount store. Thanks to an incredibly generous gift card, I’ll be purchasing my very first pair of Sanuk’s on their website today. I am SO excited for that!!! ❤

It’s the little (big) things in life, friends. The moments like these that make me smile, well they make the day a little easier. Happy Monday! I am definitely too blessed to complain.💚

My weekend…

There has been a lot of travel, a ton of appointments and a bit of overall craziness these past few…weeks? Months? I’m not even sure. I can’t remember the last time I went to the beach just to be. 

Somehow the stars aligned and this weekend was beyond beautiful. We finally had our Florida fall weather and it was an incredible 75ish degrees outside as the high! Windows open? Oh, most definitely! 

Yesterday we spent the day with our dear friends and Jacob’s BFF from the womb (who is only a week away in age!). We ventured back to the pumpkin patch we visited together last year and my goodness, what a difference a year makes! The boys ran wild of course but had such a blast. They went to the petting zoo, checked out all of the pumpkins (seriously, I think they touched each one), and of course (Mom’s favorite) the hayride. It was gorgeous outside and such a blast!

Next up, we traveled back to the Choo-Choo train we rode in July and did a special ride that included a pumpkin patch visit. The boys adored the train and had fun running around the (relatively small but perfect for them) pumpkin patch. They had tons of energy (thanks to Jacob’s first Halloween cookie) and used most of it up in the playground afterwards. I am not entirely sure how that many laughs, that much fun and so many memories are allowed in just one day!

Then today. Jacob has been asking for the beach every single day this past week so we knew it was a must – it wasn’t just me getting antsy for a beach day! We enjoyed an awesome lunch with amazing company at one of our favorite places overlooking the beach. Somehow I forgot to take a picture with my in laws and Uncle Tyler. Jacob had so much fun with them and running away from the waves.

After they left for home, we drove down the beach for a bit. It wasn’t packed at all, which was super exciting for us. Though windy, the sun was shining brightly and the day was ridiculously gorgeous. I walked Jacob around for a while, looking for seashells and sand dollars. We found lots of jellyfish and made sure to stop and check each one out. He loved all the little birdies (tweet tweet!) so when he saw a big white bird, he wanted to stop and check it out (oohhhh!). This age is amazing to me. This little man loves to explore & learn and I am not quite sure who enjoys it more…Jacob learning about the world or Momma teaching him about it. It might just be one of the very best feelings ever. Especially when I get to share my own stories with him while teaching. ❤

Eventually he fell asleep, literally trying to hold his head up while his eyes were closing, my poor sweet boy – so tired!  While he slept, Joe & I enjoyed the ocean and each other. The smell, the sounds, the birds grabbing fish out of the ocean right in front of us…perfection. Just being there is calming and relaxing, especially on a day like today.

(Yes, little man totally stole my hat and wore it all day today!)

This weekend was perfect. It was exactly what I needed. A chance to enjoy this beautiful weather, make memories with family and friends and just…be. True perfection. 

Here’s to a fabulous week ahead! 💚