My apologies for the late post…

It’s been a long week post surgery. The surgery itself went quite well and frankly, I felt wonderful for the remainder of that day and most of the next. Then the weekend came and it was back to the insane headaches that leave me in tears in bed for days. I finally decided through gritted teeth and tear stained cheeks that it was time for a hospital trip. It’s not that I thought cancer was taking over my entire body but something has to give with the way that I’ve been feeling lately. 

Joe called my oncologist and spoke to him Sunday. As it turns out, my nurse practitioner was doing her rounds at the hospital that we were planning to go to so she was able to set up all of the admissions paperwork and initial consults for me so that there wasn’t any waiting around and I was guaranteed a bed. So, a bit of light packing later while Jacob finished a nap and we were on our way. I won’t lie, the ride there was horrible and the idea of an ambulance each way quite tempting but I thought better against it. We dropped little man off with Grandma (he was a little too quick to say good bye to us and go play) and went to check ourselves in.

We’ve only been here since Sunday night but I had my first official brain MRI with tissue expanders removed – wahoo!! I had a breast MRI when initially diagnosed to confirm tumor placement but that’s all folks. A brain MRI was exciting and nerve racking to finally have done. And guess what? It’s ALL CLEAR!!!  That’s right – I said it – ALL CLEAR!! TOTALLY STABLE FROM ANY BREAST CANCER IN MY BRAIN!! How awesome is that?! God is good, my friends. God is GOOD

Now, that doesn’t quite tell us what is causing the headaches – the horrible, debilitating headaches – but it does tell us that it’s not from a tumor in my brain. Hallelujah!
There is talk about wanting to do a spinal tap / lumbar puncture to grab a sample of the spinal fluid to be tested for infection or cancer. There is also the possibility of the headaches being a side effect of taking Afinitor or Afinitor mixed with Xeloda. So for now we are taking a break from those to see if it helps. Basically, we are trying a bit of everything to see what helps…which I’m ok with because of how unbelievable these have been!

We have received an incredible outpouring of love and support over this last week – even when folks didn’t know what was happening in our lives. We can’t thank you all enough for every drop of that LOVE!!!

Almost all of the crosses that have been ordered have already been shipped and received – I’m just LOVING the pictures showing up of them, keep them coming! Please send me a message if you think you should have received yours by now and haven’t.  💚

I’m not entirely sure when I’ll be released but I anticipate being behind on life a bit when I am out. I also know I’m behind on responding to texts, emails and messages so I am sorry already for that. I appreciate your patience as I work to get caught up, though it will take time. I feel like “relaxing” in the hospital should be just that….but it’s not. I spend the day covering my face from these insane headaches, trying different combinations of medications to to stop them, figuring out what to eat  without vomiting and trying to sleep in between. Blech.

Thank you for your continued prayers, support and love. 💚💚💚

Advertisements

“My ‘noculars!”

I can’t stop looking at these pictures from school today – and I love my big hug before he headed there!

Jacob received his “noculars” as a Christmas gift from Grandma & Grandpa. They were a thoughtful gift to help Jacob find fish when out fishing. He absolutely loves them and hasn’t really put them down since Christmas. He likes to take them everywhere and will often bring them in the car and tell us what he sees through them, including mommy and daddy.

For the last week, Jacob has been asking to take them to school. Typically when he does this with a toy or book, we can talk him out of it because he doesn’t want to lose them at school. And we promise to bring them with us when we pick him up. With the binoculars though, he wouldn’t take no for an answer. He was so adamant that we asked the teachers if it was OK that he kept them with him. They happily agreed (oh gosh, I sure hope he is sharing!) and I don’t think he’s missed a single day of bringing them with him since.

He accidentally left them at school last night and was a bit distraught over not having them. When we explained that he would find them at daycare when he went, he was anxious to hop in the car and get there. I imagine he found them soon after arrival and didn’t take them off much afterwards. 

His school uploaded the pictures of him drawing on paper and then checking it out with his binoculars. I love it so much! They are helping him to embrace the use of his favorite toy and learn more about how he can use it. I love that he has such a wonderful imagination to go along with these binoculars and that his school helps him to foster that. I love that he loves a toy that has practical uses. I love that he enjoys his binoculars so much. I love everything about these pictures. 

I love that I see these pictures and it makes me take a step back in my own life. It’s easy to get caught in the thick of things and lost in the weeds. It’s hard to pull yourself out and find yourself & your purpose again. Feeling as badly as I have recently, I have been losing myself in those very weeds, focusing solely on the pain and discomfort. 

But there’s so much more to it. There’s all last week, which I am still not over emotionally. There is all of the incredible upcoming events and visits that are planned. There are the little things (that are actually quite big in the long run), that I want to incorporate into my everyday routine and have no excuse for why I keep pushing them out. There’s my purpose, my desire, that I want to focus on now, not later.

No, I can’t stop the way that I feel physically, but I can take a look through a different lens and see the things that I want to focus on. Things that I’ve been excited about but pushed aside because of the way that I have felt recently. 

It took Jacob and his noculars to remind me that I am in control of the lens that I use to see life through. It’s time to start using the one that helps me focus on what’s truly important. It’s time to switch my lens.

My love

Today we celebrate the day Joey was born. It’s crazy to think that we have only celebrated this day together 14 times because that doesn’t even begin to scratch the surface of how much celebrating this man deserves.

When we first started dating, the path of our life together was laid out in front of us. The possibilities seemed endless and it was just a matter of choosing what we wanted to do or focus on. Whether it was buying a house and all the work that goes into it or owning only a motorcycle to get the two of us around to jobs and school or preparing to have a little person in our lives – this man has always stood by my side and never wavered. No one would ever expect that when they commit their life to another person, that it could mean having to deal with a terminal illness. Wanting to continue living your life while sharing that life with a disease that fights harder than anything you’ve experienced…it is not only exhausting mentally & physically, it is scary.
And yet this man doesn’t flinch. He continues to fight along side of me, always. He attends every appointment, asks all the right questions and cares for me whether I ask for help or not. Somewhere in the mix of all that chaos, he continues to be a father, a husband, a son, a friend- and so much more. Not only does he do all of these things, he is amazing at each and every one of them.

This man is my protector, my confidant, my comedian, my psychiatrist…he is my best friend. I can’t imagine sharing this crazy life with anyone else in the entire world.

I am feisty, irrational and weird. I have moments of insanity, complete breakdowns and tears of laughter. I cannot possibly be easy to love and yet here he is…by my side every step of the way. 

Happy birthday, my love. I love you with all of my heart. Always.

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.

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.