God Winks…

I have been a believer in God Winks for many years. I remember when I was around 18 or 19 & I read a teeny-tiny book about God Winks. It explained them in plain terms for me & provided examples that I could relate to in my own life. Some examples were simple, perhaps opening a book – particularly the Bible – to the exact passage that you needed to hear in that moment. Or something bigger like an unexpected visit or gift that answered your unspoken question. Sometimes they were shown as a way to remind me or show me that I made the right choice.

Once you change your way of thinking to start seeing these winks sent by God, they seem to be more noticeable. They were likely always there but it was a matter of changing your thought process to ensure that you can pick them out. It’s not something that is necessarily seen in the moment, although that certainly happens, but often times it’s thinking back over the last week or month and realizing just how many – and how BIG – God Winks surrounded you.

I’ve been thinking back over the weeks of this year. I was struggling with making a particular decision and over-thinking it, as I often do. Without realizing it at the time, every question or hesitation that I had was answered or removed as a non-issue. Before it was even time to make a decision, the decision was made for me because the God Winks laid out the answer for me by eliminating every possible burden or roadblock. There wasn’t a choice to make because the path was laid out before me.

This week has been filled with blessings. Many I have written about and others that I haven’t, but this entire week was filled with tears of pure happiness and joy. I can’t fathom what I have ever done to deserve the incredible blessings that my family and I have received. 

I won’t pretend this week was easy, because it wasn’t. I had my fair share of frustrations, I have been in continuous discomfort, my tumor markers are rising, my fluid output isn’t getting lower (850 ml on Friday) and my energy levels are the lowest that I’ve ever seen them. I have a lot of decisions to make, a long list of to-dos and I can’t seem to catch up on life, despite making more room for me to handle life.

But…I think back to the blessings of this week and I smile. They overshadow any of the down moments that I have had. They make me smile and make my heart feel full. These God Winks remind me that I am on the right path in life. No, it’s not perfect and yes, I have a lot of things to do (I am stalking UPS and anxiously awaiting the arrival of my new planner that I hope will help me to organize my life!).

But I must be doing something right. If these God Winks – these amazing blessings – show me nothing else, they show me that I am headed down the right path in life…the path that I am meant to be on.

💚

“I will bring you butterflies”

Every year for the week of Valentine’s Day, Jacob’s school has a Heart Art Sale. All the kids in school create a special piece of artwork (thanks to the amazing teachers!) and the art goes for sale to the parents for $5 each. As part of this sale, the kids learn about what philanthropy means and the proceeds are donated to a charity.

This year, Jacob’s school surprised us in a BIG way. They decided to donate all of the proceeds from the Heart Art sale to the Rallying for Red Phoenix fundraiser! They even bought Jacob’s artwork for us!  As if that isn’t enough to make me cry, an anonymous donor asked to match all of the proceeds from the sale. Wow. There are no words to express how this has made us feel. His school made us promise not to use the money towards any adulting – just something FUN for our family. They even suggested a weekend away at the beach – how perfect does that sound?!

Throughout this entire week, the school celebrated Spirit Week. They wore a different color each day and learned what it means to be a philanthropist. They have spent the whole week decorating the school with all of the art they have been working on this week, as the Heart Art artwork pieces are sold.

On Thursday, we picked up Jacob to find that the entire lobby was decorated as the Red Phoenix Beach! Each classroom chose a different piece of beach themed art to make and each child created their own masterpiece. They took all of these amazing pieces of art and created a beach – just for me. And wow, is it incredible.  The imagination, the vision and the depth of dreams that these children have is amazing. Truly amazing.

Then there was today. The color of the day was green and it was Red Phoenix Day!  Everyone wore green – many even wore a Red Phoenix shirt! Walking into the school today, I couldn’t help but smile with tear filled eyes. Seeing the incredible beach pictures, the art work made by all of the different classes and everyone – kids, parents & children – wearing GREEN…for me. Every time I thanked someone they responded by telling me that they should be thanking me, for being an inspiration to them. I’m just me. It’s you all that are so amazing.

Picking up Jacob tonight, the director stopped to tell us that she had a surprise for us and to stop on the way out. After picking up little man from the playground, we headed back to the lobby. There, the director came out of her office with a jar and two books.

The Jar.  She shared that the jar is a Love Jar for us, from all the kids in the school. It is filled with paper that is cut into the shape of mason jars and each child in the school decorated their own jar with their fingerprints or drawings or hearts or words just for us. The title of this post? One of the awesome jars I found in there.

The Beach Book. They made “Our Beach Book For Ms Meghan”. It’s filled with beach scenes, made with love. There are beach chairs, boats, fish, sharks, crabs, palm trees, lots of sand and the sun too. It’s…perfect.

The Book. All of the teachers and directors of the school wrote messages to Jacob in the book, “Mama, Will You Hold My Hand?” by Anna Pignataro. I was told to be ready for tears from the book but I imagine many will be from the notes to Jacob also. ❤

Amazing. As I hugged each of these incredible women, I couldn’t help but wonder how we ever became lucky enough to find this school. Not only do they adore Jacob and treat him like their own, they are unbelievably kind to us as well.  They are a part of our family and a reminder of just how blessed we are.

We are truly too blessed to complain. 💗

Today…I slept.

Since being diagnosed with cancer, especially Stage 4, I am not a big believer in “wasted” days. You know the ones that I’m talking about…the days where you stay in your pj’s just about all day or that you get dressed but never leave the house or that you even spend simply binging on some TV shows. There was once a time where I felt as though I had to go-go-go in order for the day to feel particularly memorable or significant, I suppose. After Jacob was born, any day spent snuggling with him was considered amazing and yet I still felt the urge to be doing something or to have plans most days. 

I have an ongoing list of things that I need to do. While they aren’t “urgent”, they are things that loom over my head. They don’t require a significant amount of effort, since most of them are phone calls or follow ups, but they are things that need to be done. My home health nurse visited again today (Monday, Wednesday, Friday for a few short weeks), and I figured I’d tackle my list after that.

Today though, I slept. I didn’t mean to, it just happened. I have been battling with sleep since before surgery and the last two nights I have gotten close to 7 hours, which is exciting. The nurse came and removed another 750 ml of fluid (what?! Friday was only 260 ml. I don’t know how it increased, but I wonder if it has to do with my position during draining.)

I felt particularly tired after the nurse left and laid down, setting my alarm for 45 minutes later. I figured that I’d have a quick nap to regain my focus and then tackle my list. The day had different plans.

I woke up hours later…literally. I couldn’t believe it! I must have turned my alarm off while sleeping and continued to snuggle under the covers. 

When I finally woke up, I felt quite guilty. My list is still untouched – well, that’s a lie; I just added 3 more calls to it – my coffee is sitting cold in its mug and I haven’t even unloaded the dishwasher from last night. I feel guilt trying to sneak in and make itself comfortable, but I won’t let it. I was tired and my body needed the extra rest. I feel as though I have pushed myself many times over the last year & a half and I don’t want to do that anymore. Whether I meant to or not, I gave my body the rest that it craved.

So, that’s my day. I do not consider it wasted but rather needed. A day that my body and mind was urging for…to rest. 

Getting organized!

I posted a few weeks ago about needing ideas for how to help organize the ridiculous amount of treatment related…stuff.  I received a call a few days later from Aaron, the owner of Bear Residential Construction in Zellwood. He explained that him and his wife read my blog and have been wanting to do something to help – and that helping with storage was right up his alley!  He asked to come by our house the following week to see what space we had and what supplies we were looking to store.  I was shocked and excited about the offer!!

Aaron stopped by last Monday, along with Mike from Team Gina. They were surprised at just how much stuff I actually have related to treatment – with more supplies for the PleurX Catheter on the way. They discussed options and thought that a large cabinet would be best, which we have the space for in our bedroom. It would allow us to consolidate all of my supplies, which are currently spread amongst the two bathrooms, a closet, my master bathroom sink and the top of the refrigerator, into one central location. I was giddy with excitement when they showed me what they had in mind and headed out to order supplies.

Aaron called me Friday to let me know that everything was on track and that they should be stopping over to install it today – which they did! Aaron and Mike ventured back over to our side of the town, bringing Tom from Team Gina with them, and with the trailer in tow. 

They spent a few hours installing the cabinet in our bedroom. They secured it to the wall, removed the baseboards so that it sits flush and even brought along childproof locks to keep Jacob out. The cabinet itself is amazing. They painted it to match the other cabinets in our bathroom, included adjustable shelves and it has TONS of storage space! It’s…incredible. It’s more than I ever envisioned and works perfectly to centralize all of my supplies – and in a place where I use them most!

In addition to the cabinet that they graciously supplied us with, they asked if we would like to join them for the weekend at the Team Gina Golf Tournament in April. Ummm…YES!!

AND!! We get to ride in the hot air balloon to help with the ball drop for the tournament. How cool is that?!

On top of the cabinet, the golf tournament and lots of laughs with the guys…they also gifted us a very generous donation towards my medical & prescription costs for this year.

To say that I am too blessed to complain would be an understatement. These men have made – and continue to make – a profound impact on my life and the life of my family. They are kind, caring, generous, loyal and funny. I am so blessed to have them in my life. 💚

Friday’s draining..

The home health nurse came today. I’m glad that it will be the same woman each time and that she is kind. I answered a small amount of questions – nothing like yesterday – and she took my vitals. I explained that I suspected there to be some fluid, maybe around 500 ml, because my friend noticed my shortness of breath unloading the dishwasher yesterday (she actually made me stop so she could do it) and also that I had been coughing quite a bit. We had a choice of ordering bottles in the 500 ml or 1 liter size. After talking it over, we decided to start with the larger size in case it’s a decent amount of fluid at first. We can order the smaller ones next time if we need to.

The bottles come in a sealed bag with a sterile kit that includes gloves, all bandaging needs (though I will need to order more so that I can change bandages in between, such as when I shower), alcohol wipes for cleaning the tubing & my skin around it and caps for the tubing (the caps will be replaced every visit). We decided that laying on the bed sitting up would be best and likely the most comfortable for me. 

Since the hospital had the tube outside of the bandages, she was able to drain me before changing them. After cleaning the plugs, she hooked me up to the tube connected to the bottle and fluid immediately started flowing out. She expressed her surprise, indicating that when the fluid comes out quickly like that it typically means that there is a large amount of fluid in there. The bottle was filling rather quickly too.

The hookup of the tubes is where some people say there is pain but I could only feel a little pop of pressure. The draining didn’t hurt at all and actually I could feel a bit of relief as the fluid left. It must have been putting a good amount of pressure on my lungs. There is a roller thingy on the tube that connects to the bottle so that I can control how fast or slow the fluid should drain or to stop the flow entirely. We started slow but picked up speed when I realized it didn’t hurt (I was super nervous about it being painful – still am!).

As the bottle filled, I could feel a bit of discomfort forming in my lungs and a cough getting ready to form. We slowed the fluid, saw that the bottle was already past the amount that is supposed to be taken at home, and stopped the flow. 1100 milileters was drained! That is craziness…the nurse indicated her surprise since I was drained 1200 milileters late Tuesday. She unhooked me, cleaned it and capped me off.

Next she took off the hospital bandage, cleaned me up from the antibacterial stuff they wiped on my skin from surgery (it was under the bandage so I couldn’t clean it myself), and then rebandaged me. The removal of the sticky tape was probably the worst part (does that bother anyone else?). The fluid itself gets flushed down the toilet, the bottle is wrapped in a plastic bag and tossed. Sadly, they are not recyclable.

The entire process took less than an hour and I was glad to have the bandage replaced. I still cannot believe the amount of fluid that came out today. Like I mentioned yesterday, I’m not sure if they didn’t drain me in full on Tuesday or if I’m truly filling up that fast. It also made me wonder if my lung will only hold 2 liters at a time and maybe that’s why I am always so uncomfortable. Perhaps it wants to produce a liter every other day but can’t because there is no room in my lung…until now. So it’ll be interesting to see how much fluid I continue to produce. I literally weighed 3 pounds less from the fluid removal. 😐

So that’s my excitement for today! Aside from that, I have been battling a cold that doesn’t seem to be getting better. We ventured out of the house tonight to see some dear friends and just a few hours into being out, I could feel that my body had enough. It was the first time that I had been out of the house since surgery but unfortunately, it didn’t last long. My cold seemed to get a little worse and the soreness that was getting a little better came back at full force. Yeesh. It was nice to get out for a bit and see our friends though!

So this weekend will be spent resting, recovering and enjoying this beautiful Florida weather with my boys. Happy Friday night, all. Here’s to the weekend! 💃💃💃

I picked up Jacob today.

It’s strange adjusting to having a tube permanently attached to my body. For some reason, they bandaged me up but left the tube dangling so it’s extra weird. I asked the nurse to tape it in place so I don’t accidently pull it (eek!). Thankfully the home nurse is coming tomorrow so I can have it rebandaged with the tube wrapped up under the bandage.

I’m sore but it seems to be getting better. Thankfully pain medicine helps, I just need to stay on top of it. I slept through a dose last night (hurray for 6 straight hours of sleep – that hasn’t happened in weeks!) and woke up super sore with the alarm clock today. Yeesh, not fun. I find myself leaning to the right to avoid pain but I try to catch myself doing that. I certainly don’t want to feel better because I’m walking around in a weird position. 😉

I have two incisions from the surgery. One has the tube coming out of it & is covered by a big bandage (so I haven’t even seen it yet) and one is stitched up but under the clear adhesive cover. Both are tender and I can’t help but yelp a little in pain when I accidentally nudge that area. My chest feels better than the pressure that I was feeling before so I’m grateful for that!  The pain isn’t from the pressure so much as the wound itself, so I’m hoping by the time the weekend is over, the pain will be gone.

I’m curious about how much fluid the nurse will remove tomorrow. They took out 1200 milileters during surgery, which is the least that they have taken out so far. But they were only supposed to take out around 1000-1500 ml with this procedure so I’m not sure if they stopped draining because the fluid was gone or because they reached the amount they are allowed to take. We shall see tomorrow morning!

Yesterday was a bit too busy for me considering it was the day after surgery. I had my monthly Xgeva shot, which took hours because of a delay with the their annual pharmacy cleaning. We left with just enough time to arrive home to meet the home health nurse. She came over to get the initial registration paperwork completed. My goodness, this took over 2 hours! She wasn’t kidding when she said there were a lot of questions. I went through the basics of medical history, medications, surgeries, etc. Then things got weird. I had to describe my escape route (I have more than one door to my home, in case you were wondering!) and how I would handle a hurricane that was coming to my area (this was a “stay” or “go” question but I had so many questions in response to the question before I could give a one word answer! 😐) The nurse was kind and we had a good laugh over the outrageous questions. She will be the nurse who comes to drain my lung too so it was nice to meet her in advance.

After she left, it was a long phone call to the equipment supply company to ensure that I had the PleurX Catheter supplies before Friday. They called when I was in surgery on Tuesday but when they spoke to Joe, they refused to place any orders while I was actually IN surgery. Apparently I had to be home first. It’s protocols like this that seem silly to me. I imagine the process is in place for a reason but the delay of a day meant that delivery had to be 1.day shipping instead of 2 day shipping. Thankfully I didn’t have to pay for the shipping but I am sure that cost is incorporated into my healthcare somewhere.

Needless to say, after all of that- I was ready for a nap! A quick nap turned into being woken up 3 hours later to Jacob being dropped off. Yikes – I guess I was tired!

So today, I was able to relax with a friend and watch movies. It was needed after the craziness of yesterday. She even made an amazing crock pot meal for us so we didn’t have to worry about dinner! ❤

And tonight. Well, tonight Jacob hung out with me while I made Valentines for school. I’d like to say he helped but he mostly just wanted to play with the string. 😋 Before we knew it, it was bedtime…and I was able to pick up Jacob. It sounds silly and it was only a couple of days that I wasn’t able to lift him but it felt like forever. And I was able to tonight. I can’t express just how exciting that is! 💗

I hope you are all enjoying your week and are excited for Friday. Have a wonderful night and keep spreading that LOVE!!! 💞

Tonight’s blessings…

As I lay in bed tonight, I cannot help but smile. Today was not easy and honestly, I left the hospital in tears over the way my discharge was handled. It was after 8pm by the time we arrived home and to say that I was exhausted would be an understatement. But as I lay here surrounded by the dark of night, I am reminded of just how blessed I truly am.

I am blessed because…

I have the most amazing husband who stands by my side and sits through surgeries and holds my hand and fills my prescriptions and helps Jacob brush his teeth and makes sure I eat and drives me around and the million other things that this man does for me because he loves me.

There is a procedure available that allows me to deal with this fluid in the comfort of my home and before it becomes painful.

My in-laws adore Jacob and are more than happy to watch him – and he loves them just as much!

We came home to a sparkling clean house, courtesy of dear friends.

I have the ability for a nurse to come to my home and help teach Joe how to drain my lungs for as long as we need.

I could feel all of the prayers, positive thoughts and good vibes today. They swirled about me and my family, touched the hands of the surgeon and his staff and are helping to ease the pain from surgery. I have the most amazing support system that lifts me up and fills my heart.

So as I fall asleep tonight, it will be with a heart full of love from the incredible blessings that I am gifted with tonight & always.

#TeamRedPhoenix