My room. 

I started thinking about new year’s resolutions a few weeks before 2016 ended. I had a few things in mind…not so much resolutions but things that I wanted to change in my life.  Time slipped by and these got away from me a bit. I kept meaning to implement these changes or make progress on them but it was never at the top of my list.  The last few days, I was reminded that time will always continue to pass. I will always find an excuse or a reason not to fit something in or to change priorities. If I don’t implement the goals that I want to see, then who will?  No more excuses.

I looked at my goals for 2016 and for the most part, I was successful in the things that I was able to control. Being re-diagnosed with Stage 4 doesn’t necessarily change my goals but it does change the perspective that I have when making them. A lot of things that popped in my head are changes that I’ve been wanting to make anyway and just haven’t gotten around to it. So wrapping them up with a pretty green bow and calling them 2017 Goals is the way I’m incorporating them into my life.  It is Chinese New Year today, after all! 😊

One of the goals that I set for us is my One Line a Day book. Another is sleeping routines.

I was gifted these books by two different ladies at the end of 2015. They are 5 year journals but you only write a few lines for each day. It’s usually something memorable that happened or something fun that we did. Or maybe we had a visitor or Jacob did something I never want to forget. I’m pretty good about keeping up with them, though sometimes I fall behind and I’m struggling to remember what funny or special thing happened a few days ago. Having a memory that is failing does not make this an easy task. One goal this year was to include Jacob in these entries each day. He’s talked about it before and I’ve asked him what to include but I wanted it to be something he looks forward to each night. Since it’s a new year, this time when we open the book to a new day, we have last years entry to read. It’s exciting to reminisce on what we did this day last year or where Jacob was developmentally. 

One of the comments that filled almost every day for the first week of the year was about Jacob sleeping in his own bed. Nap time, bed time – even sleeping through the night! My goodness, it was going so well last year – what happened?! Radiation in April/May, that’s what. Halfway through and I was too exhausted for middle of the night wake ups or hour-long (and then some) bedtimes. Coming into our bed in the early morning turned into halfway through the night, turned into barely an hour in, turned into “Bedtime, Jacob! Hop in between Momma & Dad-dad.” The rest is history. 

I love Jacob sleeping in our bed – I do! He is such a good snuggler, he hugs me for no reason and, well, there is nothing quite like waking up to his smiling face telling me good morning (“it’s not too dark!”). But he often wakes up before he should because Joe & I are getting ready for the day. Or he goes to bed too late because we are finishing something up before bed.  For those reasons and more, we felt like it was time to try his bed again. 

We have been talking about it with him a lot, especially when we were on the cruise and going home to his big-boy bed. But we haven’t made any actual attemps yet. So this afternoon when Joe asked him where he wanted to take a nap, we were both surprised that his answer was “my room”.

It took a while, a walk around his room, lots of snuggles and some singing but it happened. After some ninja moves to leave the room, we were shocked that he slept for his entire 2 hour nap in his bed. Dare we try bedtime too?!

Since Jacob was in my tummy, I have wanted to start reading him different book series at night. Many are books that I’ve been wanting to read and others are from my childhood. I visited a used book store at one point when he was only a few months old and bought treasures just for that. They have been patiently waiting in his closet since, for me to look at every time I opened the door.  

Hours before bed, we started to tell him about our new routine. We continued to prepare him all night. When his jammies were on and his teeth were brushed, we asked him where he was sleeping tonight, “my room”.

And so it began. We laid in his crib and I read the first chapter of Harry Potter to him. He was fidgety at first, rolled around a lot, talked to his animals as well as himself…and eventually fell asleep. I don’t know that he actually listened to the chapter at all but tonight was priceless to me. 

Eventually, I want to record myself reading to him but for now, we have completed the first of many nighttime readings that are still to come. 

Here’s to 2017 goals!

Oh, Jamaica…

We awoke Wednesday morning to the boat rocking heavily and the windows being pelted with a bit of rain. The wind was intensely whipping about the balcony as well. The sky was a little angry but it all faded quickly and the sun came out from behind the clouds.

We ventured off of the boat and chatted with a few people but didn’t love the tours being offered just yet. We wandered outside of the port and started chatting with a man about what our goals were for the day. We ended up meeting a man named Dwight and having him show us the island.

We rode through a bit of the rainforest, traveled up the mountains and saw the spectacular views looking out over the ocean. Stopping to smell the leaves of different plants (all spice and lemongrass grow freely!), we also learned about the different fruit trees growing around the island. We stopped by the local Dunn River Falls and peeked at the water cascading over the rocks.

Next, we headed to Bamboo Blu beach and set up – Jacob couldn’t get into the water fast enough! It was that beautiful, crystal blue again and our sweet boy couldn’t wait to run into the small waves.

Joe & I left Jacob to play in the waves for a bit while we went on an adventure. It’s something that I put on my list of things to do before turning 30 but never actually did. It’s something I’ve seen pictures of and thought – someday I will! Well, today was that day. Joe & I went horseback riding. 

I remember a week long trip in Girl Scouts when I was young. We went to a farm of sorts and one of the activities that we did a few times throughout the week was horseback riding. I remember feeling as if I was high off of the ground and a little afraid of the height but truly enjoying the experience. 

Dwight took us to two local guys just up the road from the beach. We received a great price for the hour that we wanted to ride. We hopped on our horses, Crystal and Cindy, and I had a moment of panic when she first started moving.

What are you thinking?! This is so high! What if you fall off?!

But I swallowed those fears, put on a big smile and braced the moment. I will do this! So off we went.

Joe & I traveled up the mountains through the town where the locals live, saw goats – young and old – eating the tall grass, saw a community garden where anyone can grab fresh fruits or vegetables for their meal, they simply need to replace it with a seed or two and Joe even picked me a bright pink hibiscus. Our guides told us stories about the town and shared the different things they do to keep busy. At the top, we saw the breathtaking view of the water below. We headed down the mountain through the town and into the some of the wooded area by the beach. We learned about the trees that only grow in the shade and I may have bumped my head on a few branches along the way, despite the warning of doing just that.

Eventually the trees opened up to show the dazzling blue waves of the ocean. Our guides stood back while Joe & I rode our horses into the water. It was clear that Crystal & Cindy love the water as much as we do. They trotted through the waves, the water lapping up over our thighs. They stopped to play in the water, flicking it up over their heads and onto us. I don’t think the smile came off either of us the entire time.

After riding in the water a bit and learning about local fishing, we headed back. I trotted up ahead of Joe & turned around to see him racing up the trail behind me. His grin was from ear to ear. The trip was amazing. It may have only been an hour of our time but the memories are completely priceless.

Dwight brought us back to the beach where Grandma & Grandpa were playing amongst the waves with little man. He wasn’t too interested in chatting with us upon our return, as he had his own ear-to-ear smile from the ocean. I sat with him in the waves, while we picked out the big & little waves and braced ourselves for when the water rushed over us. We said “ew!” at the seaweed floating in from the reef and dug holes in the sand. The hours flew by and before we knew it, it was time to head back to the ship.

Dwight met us and drove us back, telling us more about the town on the way. He was a wonderful tour guide and I would absolutely book him again if we return. (And you should too if you head to Ocho Rios!).

Once on the ship, Jacob took a bath overlooking the water. Despite his shower before leaving the beach, another pound of sand may have come out of his bathing suit. He loved holding the spray shower head over him and “wash my chest and wash my legs and wash by tooshie…”. Seriously, just too cute!

A nap before dinner was needed after such a fabulous day.

So I went to Hell…

On Tuesday morning we awoke to the boat approaching Georgetown in the Grand Cayman Islands. Cayman is a new experience for all of us so we were all anxious to visit the town. We had to tender into this port, which was an extra opportunity to experience the amazing waves.

Once on land, we grabbed a taxi to take us to Hell – a small, local place named after their limestone rock formation and with its own post office. Jacob helped to send ourselves post cards and we are anxious to see what the post mark is. They also stamped passports, which worked out well since the office for the port authority was closed each time we tried. It was a neat little place to stop by.

The taxi then took us to visit the tortuga rum store, a quick stop by the 7 mile beach and, to Jacob’s delight, the dolphin discovery center. Though we did not actually interact with the dolphins, Jacob loved watching them swim and jump about. Ms Welcome was a wonderful driver and host, taking us around to different parts of the island and sharing fun facts with us. 

Shortly after our tour, we ventured over to take the Seaworld Observatory boat. It’s the only excursion we booked ahead of time and were excited to see how much Jacob enjoyed it. We hopped on a boat and immediately headed down the stairs. About 6 feet under the water, we sat on a bench looking out into the water around us through big windows. The whole tour was about an hour. The boat took us out a little way and told us what to look for under the water. We saw dozens of fish, two separate shipwrecks, a stingray, lots of that beautiful sand along the bottom and a gorgeous coral reef. We saw a group of scuba divers and the Captain of our boat jumped in to scuba dive while feeding the fish around our boat. The entire experience was magnificent and Jacob completely loved it!

Though we had a few more hours left, Jacob was tired and it was time to go relax. We ventured back to the boat, snuggled up on the bed in front of our window and took a nap before dinner.

Our night ended with Jacob standing on the balcony with me & Joe, pointing out the twinkling stars filling up the sky high above us. He then serenaded us with “twinkle twinkle little star”, his pointer fingers dancing up and down to the lyrics.

Perfection.

Cozumel…

Joe & I have had the luxury of visiting Cozumel twice in our short married lives. I have never seen such amazing beaches before. We took a page out of our honeymoon book and decided to tour the island on Monday. With 5 of us, we opted to rent a Jeep – a stick shift, to Joe’s delight.

We drove the entire island, saw the incredible water and enjoyed a yummy Margarita. The day was magnificent. We even had time to grab some vanilla, made locally.

I remember visiting Cozumel on our honeymoon cruise. I sat on the rocks and watched the ocean wash up in front of me. The bright blue water bursting amongst the rocks, turning white with the spray and retreating, just to do it all over again.  I was in awe. Living in Florida, I have some pretty awesome beaches near me…but this was spectacular. 

The beaches are just…breathtaking. The water is the most amazing blue, they are either rock or sand depending on where you go and the waves crash magnificently in front of you. Jacob could feel the spray of the waves while taking in the sites in Daddy’s arms. It was a sight to see. We were excited to visit again and hope to go back again some day.

Mesmerized…

Joe & I booked a cruise last minute for our honeymoon. Booked just a week or so before it was set to sail, a friend of ours asked what boat we were taking for our first ever cruise. “The Norwegian Epic. Apparently our room has a balcony so that’s cool.” My friend stared at me blankly. She then explained that not only was it in its first year, this ship was also the biggest ship in the Norwegian fleet. Well, then. I suppose we made a good choice!

We have been on a few cruises since then but this was Jacob’s first – and it was only fitting that he joined us on the Epic once again. Joe’s parents joined us too – and memories are already being made!

Jacob was Mr Cool Kid from the start of the morning – complete with sunglasses, his first pair of Sanuk flip-flops & all. After a small tour of the ship and lunch, Jacob took a mini nap so he was ready for the evening.

We were treated to dinner & a show at Cirque du Soliel. Anticipating a large theater, you can imagine our surprise when we walked in to a cozy room and were seated at a table with front row seats. If I moved my head the wrong way, it might have been knocked when the acrobats swung from the ceiling!

To say that Jacob was mesmerized is an understatement. A small fright at the music initially, he sat up in his chair with his jaw dropped the entire time. He barely ate, he was so in awe of the show! He danced to the music, stared in awe of the incredible artists and even gave a high five to our waiter at the end.

It was a remarkable first night of our cruise. After the show, we all sat on the balcony and stared out at the bright moon rising in the sky and the stars twinkling all around the sky. It was perfect.

Just a plain-ole-Monday…

Growing up, my parents had a boat. We enjoyed many summers on the local river, spent quite a few nights camping and have a lot of stories and memories to share. It was a point of fun (and frustration) throughout a few years of childhood. My big sister and I took boat lessons and I took pride in being the copilot of my parent’s boat. I could drive it, dock it and set the anchor at a young age. Though I lost many of those talents over the years, they are memories that my sisters and I laugh and talk about now.

The excitement of the past few days didn’t end today. We went out for a boat ride with friends. We spent the day on the river, the boys played at Blue Springs park while checking out the manatees (though they were more interested in running around the grass) and we cooked out at Hontoon Island. We shared stories, enjoyed the sun and were shocked by the massive alligator we saw sunbathing beside us. It was a gorgeous Florida day.

There is an old tree that my family and I always stop to take pictures at. Daddy stuck his hand through it and startled Jacob. Well, that sent him running and screaming (nothing a quick snuggle couldn’t fix). I happened to capture the moment on camera without realizing it. His face is quite priceless!

Despite getting yelled at by the park attendant (apparently they closed 15 minutes before we returned…oops!), the day was amazing. My boys, my momma and Jacob’s friend from the womb (and our good friends!) and the day was built for memory making.

I hope all of you enjoyed the day after Christmas and were able to snuggle your family and enjoy every moment. Happy Monday!

Today’s excitement

I’ve mentioned before that once diagnosed with cancer, every bump and bruise is cause for concern. I try not to be a hypochondriac but frankly, it’s better to get ahead of things when possible.

At about 4am on Thursday morning, I woke up from a terrible pain in my right side. It was worse when laying down and I noticed a rattling in my right chest when I breathed. Sigh. Again?! I was concerned that the fluid was back and texted the nurse first thing. She called the pulmonary doctor and he wanted to see me immediately. We drove down town and his office was able to do an x-ray in-house. The doctor listened to my lungs, reviewed the x-ray and indicated that there was not a single drop of fluid was in my lungs – YAY! The pain I feel in my chest is likely inflammation. Now that my right lung is expanding properly, it is rubbing against my chest wall. This is normal but since it wasn’t doing that for a bit, the rubbing is causing inflammation, which is causing the pain. It’ll eventually go away but I need to try not to lay on that side for a while. Whew! The doctor also mentioned that because there was not a drop of fluid, he would take it as a sign that the drug is potentially worked already. I’ll take it! Of course, when I was checking out the x-ray I had to ask all about the other organs that I saw. Nothing like a little anatomy lesson on a random Thursday, right? 😉

Shortly after that appointment, a headache began. It progressively became worse throughout the day and by dinnertime I was lying in bed with tears in my eyes from the pain. I have suffered migraines before but thankfully it’s been a while, excluding my brain tumor. I ended up using a heating pad on my head, turning off all of the lights and taking medicine that knocked me out so I slept for over 12 hours. I didn’t have a headache throughout the night but once I woke up, I could feel it creeping back in. I texted the nurse and the doctor this morning and asked if it could be a side effect of Afinitor, since the headaches just started. It’s possible, though not a common side effect of the drug. It’s listed on their website but not something they see often. An urgent CT was needed and after a quick call from my doctor’s office, they could see me in an hour. So…off we went. I had hoped to use my port to give my veins a break (apparently the script needs to be written a certain way for that, which I learned recently and was done today) but only a nurse can access my port and I wasn’t up for waiting around so they used my veins. Not a big deal, but it hurts a little more and I worry about scarring since I’m limited to one arm.

I try not to worry about scans in general because I can’t change the results (no studying here!) but this headache is intense. Despite medicine, it still creeps in and waits around for the medicine to wear off so that it can take over again. It’s rough. Thankfully, the CT scan was listed as STAT and they called my doctor with the results within an hour. He called me happily to report – STABILITY! No cancer cells were found in my brain. I can’t express what a relief this is. With the intensity of these headaches, I thought for sure it would be a tumor.

So what in the world is causing them?! Well, it’s possibly a side effect of Afinitor, which sucks. So I’ll see the neurologist again and talk about how to keep these headaches away in the hopes of continuing on with this treatment plan.

In other news, my oncologist shared that he received a call from a pharmaceutical oncologist about the request for Afinitor to be covered under my health insurance. They were sympathetic to my case and actually indicated that they are working on medical evidence that supports this drug being used with my type of cancer (triple negative). Just a little bit later and I received an automated call indicating that the appeal process determined it WOULD COVER the cost of this drug! WHAT?! I wanted to confirm what I thought my ears heard, so I called the specialty pharmacy and had them look me up. Sure enough, the appeal was APPROVED!! YAY!!! For some reason, I have to go through another approval process (despite many questions of my trying to understand their process and them repeating the same thing they just said, I still don’t get it but that’s ok), which should take about 24 hours and then it should be officially approved and on its way to me. WAHOO! Though I have samples, this news is incredibly exciting!

So, though it’s been a crazy few days, the good news puts me at ease. My head is clear (well, aside from my slight craziness), there is no fluid in my lungs and my treatment drug is approved.

Now, I breathe. The holidays are literally around the corner (“Just two sleeps ‘til Christmas!” – per Jacob) and I plan to enjoy these moments with my family. Yes, the headaches suck but I’m doing my best to combat them so they don’t interrupt my days. I am breathing a massive sigh of relief at the last two days and I am so glad that I can rest easy over this weekend, knowing that my body is doing all that it can to fight back this disease.

I hope you all take today to enjoy each other, your family and your loved ones. Though all days are important, this holiday is special and should be treasured along with all of the other magical moments that you have in your life. I wish you all nothing but peace, happiness, laughter and love this season, and always.