Not again?!

I had a thoracentesis done right before the cruise, less than 2 weeks ago. The procedure itself was more difficult than the first, I assume because it was more than twice as much fluid. I was advised that I’d be sore for a few days but that I’d feel better after a day or two. By the time the cruise came, I still had chest pain but it was significantly better. As the cruise went on though, the pain didn’t go away and towards the end of the cruise, it started to get worse. It woke me up at night quite a few times and I was struggling to breathe going up & down stairs or carrying Jacob around.

By the time yesterday came, I was texting my nurse oncologist by 730am to see if I could have my oncologist listen to my lungs. Being the wonderful people that they are, I headed over, went in the side door and as I walked past the oncologist’s office, he walked over to the room with me and started chatting immediately. Of course they all wanted to hear about the cruise and we swapped stories about horseback riding. Afterwards, I asked him if he wonders about me when a week goes by and he or his office doesn’t hear from me. He laughed at this, mentioning that he does ask about me when I haven’t checked in. 😊 What can I say? I’ve become a bit needy… 😉

Anyway, I explained the chest pain that I’ve been having that is just like before but the pain is significantly worse. He listened to my lungs and indicated that he could hear fluid in them, though it wasn’t as much as he had heard in my lungs before – which was a week before my last thoracentesis and 6 days before my x-ray confirmed 50% right lung usage. My thought on this is that I imagine the fluid is collecting so rapidly, by the time I have an x-ray done, it’s typically filled up quite a bit more.

We discussed that I have scans being done and see the Nurse Practitioner next Monday. The fluid would show up on a CT, and probably better, but he did not want me to wait a week before having my lungs checked if I am having symptoms- especially significant chest pain. So he wrote me a script for an x-ray and said that I can use it if I feel worse between then & Monday and let them know to check the results when it was completed.

We also discussed the chest pain and he switched up my medication a bit, particularly around nighttime since I am having a difficult time sleeping because of the pain. The medication took me to 4 different pharmacies to find and cost $163.45 for a 30 day supply. Unreal. So what’s worse? Yeesh.

The medicine seemed to help a bit and though I woke up like clockwork at the 4 hour mark, it didn’t hurt as significantly and I didn’t stay awake as long. By the time this morning came though, I had pretty intense chest pain and decided not to wait on the chest x-ray. It concerned me that if the fluid was growing that rapidly, I may not make it until Monday without something worse happening – plus the pain would only get worse.

So off I went today. Thankfully, an x-ray is relatively quick compared to other scans and an appointment for one is not needed. Afterwards, serious resting was required. I won’t lie, I felt pretty bad today. I have the chest pain plus extreme nausea and absolutely no appetite…I don’t feel as though I can function properly.  Resting was necessary. 

A call from the oncologist’s office a few hours later confirmed that the fluid is back, as suspected. Although it didn’t indicate how much of my lung was being utilized, it did state that the fluid amount was significant and compressing my lung. I am scheduled for another thoracentesis tomorrow (assuming insurance approves it), as well as blood work ahead of time to review my platelets. I pray they are not too low for this procedure to be done.

So that’s that. Never a dull moment here. The big question is obviously around why the fluid is coming back so quickly, whether or not the Afinitor is working and what to do going forward (how to prevent this from happening versus what to do when it does). I don’t have the answers right now. I have my own thoughts and opinions but I am anxious to talk to the doctors tomorrow. 

For now, this sweet boy is helping Daddy to take care of me. And they are both doing a wonderful job! I am absolutely a blessed woman. It’s lots of rest for me tonight – and hopefully some relief tomorrow! 😊

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Sweet gifts

Returning from vacation is never easy – it’s like you need a vacation to recover from vacation! 😉 I have updates to share but instead I want to focus on saying thank you.

This weekend, we returned from our cruise to an empty fridge. Of course this is expected, I certainly don’t want to waste food while away! So what did my dear friends do? They stocked my fridge. They each loaded up on fresh fruits & veggies – local & organic! – and helped to make sure that we came home to the most amazing array of fresh ingredients. We have been eating so wonderfully and will continue to because of the sweetness of many dear friends.❤

Then today, we arrived home after a long first day back to work to a surprise gift – someone sent me a Love Jar! Technically it’s called “a little jar of sunshine” and was sent to brighten my day – but it is absolutely filled with love! I just don’t know who to thank for such a thoughtful & wonderful gift- it was so sweet!

I also received a hand crocheted hat & glove set in metavivor colors! A sweet woman in Indiana hand made this set for me because I made a donation to Metaviver – how cool is that?!

So today, despite being a good yet trying day, was filled with some much love and sunshine. I have the absolute greatest friends anyone could ever dreamed of. Keep spreading that love!!

Home safe

It’s crazy that just a week ago tonight, we were enjoying our first night on our cruise. Tonight, we are snuggled together, home safe.

The trip was wonderful. Joe’s parents accompanied us and we took the Norwegian Epic for a week visiting Cozumel, Grand Cayman, Jamaica and their private island in the Bahamas. We met wonderful people from all over the world, we tried new things in places that we have never visited and we took time to relax and enjoyed the open water on our balcony.

Jacob loved every moment. He swam in the hot tub, played in the splash pad and let the waves crash over him in the ocean.  He made friends with all the staff, giving big hugs before we left. Joe & I enjoyed a date night and spent a few hours alone while we enjoyed dinner and (re)explored the ship. We made so many incredible memories.

I won’t pretend that the week was perfect but it was for us. We adjusted our vacation to ensure none of us were uncomfortable. I took it easy & napped with Jacob almost every day, I have pain in my chest still but hopefully that will eventually go away and I didn’t swim quite as much as I may have before because of the wound in my chest. But that doesn’t mean that this trip wasn’t amazing – because it was. 

Tonight, we are home safe and were able to relax today and settle back in. Though we have lots to do before heading back to work & school, we will enjoy the last few moments of vacation before heading back into our routines again.

Hopefully you have all had a wonderful & fun week and you are all able to enjoy this weekend!! Keep spreading the love my friends.

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.

My Daddio

One of my all time favorite memories with my dad is from when I was finishing my last semester at school in Albany and Joe was living in Florida. Though I had spent the summer in Florida, it was hard to leave there and head back to the cold, even if it was only for a semester. 

Joe & his brother Mike visited Albany just a few weekends later. Joe had lived in New York for years before moving back to Florida but it was Mike’s first time. They spent a good bit of their time hanging out on the back porch of my parent’s house. The weather was perfect, a mix of warmth from the sun stealing it’s last few days of summer and the breeze that was refreshing & pulling in the fall…and all its wonderful scents.

One day in particular, Joe & Mike were sitting out back with me and my parents. We were laughing at a story that my dad shared about the Red Ryder BB Gun. He disappeared into the garage and reappeared a moment later, BB gun in hand. For the next few hours – yes – hours!  – my dad, Joe & Mike spent time trying to aim at the various bugs flying about the flowers that surrounded the porch. Though their aim was poor, the memories and laughter were priceless. 

Mike always talked about that day and how fun it was to embrace the moment, my family and New York.

My father is a man who would work the night shift and sleep during the day but would somehow find time to coach his 4 daughters softball games and show up at their cross-country meets.

When I was younger, my dad would return from work in the wee hours of the night and sneak in my room to wake me up. He would help to remove the bar from my feet, carry me to the living room and I would sit with him for an hour or two. We would enjoy a midnight snack and watch episodes of Quantum Leap, an absolute favorite of ours. I would often fall asleep on the couch and he would carry me back to bed.  They are memories that I hold dear in my heart even now.

Happy birthday to the man who helped raise me into the woman that I am today. To the man who showed me how to load the dishwasher, the proper way to set the table (even if I needed to write a report for it!), how to not hide from the ball during softball, how to ride my bike and that it’s ok to cry (I imagine he has a pocket full of them by now!).

I love you, Dad.

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.