Pain, pain, go away!

It’s a rainy day here in Central Florida…one that worked well with my impromptu nap this afternoon! It’s crazy to think that the week is already half over. I spent almost all weekend and a lot of this week “relaxing”. This really means that I’ve been too tired or uncomfortable to do anything. Thankfully my husband and little guy have been wonderful with taking care of me and ensuring my comfort.

I’ve consistently been draining a lot of fluid from my lung, which is drained every Monday, Wednesday and Friday. Last week ended at 850 ml, which was the amount drained again on Monday, and then 600 ml today. I owe a phone call to the doctor because Monday and today’s drainings hurt enough that I asked them to slow down and stop. I’m not sure if it’s close to the end and that’s why it hurts or if the tube is in a weird spot. It’s worth the ask, either way. The fluid causes discomfort and pain in my chest because it fills so quickly and in general, my back has been hurting a bit. I imagine this is also caused by the fluid but who knows.

My appetite is not awesome and I’m losing weight rather quickly because of it. This may be because of the mixing of chemo pills, Afinitor and Xeloda, so we will see how I feel during my week off, starting tomorrow. During my first trimester of pregnancy with Jacob, I had major food aversions. Everything seemed to upset my stomach and I basically lived off of cereal (this actually remained true throughout the rest of my pregnancy). Just the smell of foods would make my stomach turn. Even the times that I would crave something like crazy, I would eat it and immediately it would become unbearably unappetizing to me. This is reigning true now, only times about 10. Thank goodness for smoothies.

I’ve been able to get things done off of my to-do list, which helps me to feel accomplished, though my list is taking significantly longer to accomplish than it once did. I’m tired relatively quickly and often need to lay down after crossing a few things off. I’m grateful to be able to accomplish as much as I can, despite not feeling wonderful. 

It’s frustrating. The pain, the discomfort, the utter exhaustion and the overall feeling of not being well…it sucks. Throughout most of the last year and a half, I have been able to push through the times that I’ve felt bad, knowing that I would eventually feel good again. I’m struggling with that right now. The times that I feel bad are becoming more frequent than the times that I feel good.  And that hurts. I don’t like that. Despite putting on a smile and going out to do something, I am finding it harder and harder to force aside the feeling of discomfort. It’s frustrating because I want nothing more than a sense of normalcy, for my family to feel comfortable going out with me and enjoying our time together, rather than worrying if I am doing ok. I know they will worry either way, it’s just hard to come to terms with the fact that my new normal changes by the day. 

Tonight Jacob asked me if he could bring me to the doctor to feel better. While his innocence warms my heart, it stings for him to know that I’m not feeling well. I told him that I went to the doctor and have medicine to help me get better. He squealed in excitement at that and hugged me big.  He exclaimed, “Yay!! You get better! Did you see Dr T?” I laughed at his reference to his pediatrician (it amazes me what he remembers!) and held back tears, knowing that I will never get better despite his excitement.

I don’t share this for pity or to cause concern. I am not giving up and I know how very blessed that I am – if the last week has shown me nothing else, it’s that I am truly blessed. I share this because it is the reality of how I feel in this moment. Cancer sucks. It’s not all pink and frilly, sprinkled with rainbows & butterflies with a dash of survivorship. It’s constant pain, a forced smile and a lack of appetite. It’s a hope for a good day, the need to not have to nap, and to sleep through the night without waking up in pain.

It’s not letting my family see the struggle or witness the constant discomfort. It’s being afraid to make plans for the future, out of fear of how I will feel. It’s wondering if I will truly feel worse than I do during my worst moments now.

But, I will push all of those thoughts and feelings of discomfort aside. I will hug my boys and snuggle them to sleep. I will watch them breath deeply with sleep, knowing that for now I am blessed to wake up by their side and embrace another day with them. That, in itself, is one of the biggest blessings of all.

💚

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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.

💚

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. 💚

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.

Celebrating early!

On this day last year, I was headed to surgery for my double mastectomy. It was a day of fear and hope mixed together. It was exciting to be moving towards a life that was anticipated to be cancer free and the halfway point for my treatment at the time. 

This year things are quite different and I am preparing for a different surgery (not today) that will hopefully be my last despite this fight with cancer never actually ending for me.

Joe’s birthday, the 4th, was spent caring for me last year. Knowing that surgery is looming in the the future, I was determined for him to celebrate his day without dealing with anything cancer recovery related. Unsure when surgery would be, I booked an early birthday celebration. 

All that being said, today we are headed in a different direction – literally. I asked Joe to take the day off and told him that it was filled with preoperative appointments. I waited until he showered yesterday to pack and hide Jacob’s suitcase (to stay at Grandma’s last night) along with a small birthday gift. We went through the work day and as we were leaving, I asked if we could stop at his parents house to discuss the surgery plan. When we pulled up, I pretended to leave my phone in the car and had him go in ahead of me. I grabbed Jacob’s suitcase and snuck it inside. Then I grabbed the box and a card. Once inside, I asked Jacob to bring the box and card to Daddy.
He ran up excitedly, yelling “Daddy, is for you! Is your birthday! A package. A card!” Joe looked surprised and opened the box to find two matching fishing hats. I smiled widely and he opened the card.

The gift of Thursday. Thanks to our incredible family, we were all able to contribute towards a day of fun for Joe. Instead of heading to surgery or appointments, we are headed to our happy place! We will spend the day on a fishing boat, surrounded by the amazing ocean of New Smyrna Beach. We will fish, enjoy this incredible day and each other.

I couldn’t be more excited to spend this day celebrating my love’s birthday!! 🐟🐠🐡🐙🐬⛴🌊

Yes, my wedding dress is in pieces.

When Joe & I interviewed photographers for our wedding, there was a key task that I wanted to ensure was included in our plan.

A Trash the Dress session.

It would be scheduled for the day after our wedding and the main purpose was the do just that – trash my wedding dress. The photographer that we chose lit up when we asked him about doing the session. He was so excited that he included the session for free. 

Many people have their dresses preserved, or want to pass it along to their family or have other plans. For me, the wedding dress and Joe’s outfit were important and certainly key to our big day but I didn’t have plans for them after that. I absolutely loved my dress- it was perfect. And the fact that I originally fell in love with it in a size 16 and bought it in a 6…well that moment of pride adds to how much that dress means to me. The session itself was incredible and some of my absolute favorite wedding pictures came from that. Even my bridesmaids got involved!

But at the end of the day, it had no purpose. I didn’t even wash it after that day (figured I’d just ruin it) and it had hung in my closet covered by the bag that it came in for the last 6+ years. I’ve toyed with doing different things with it over the years but never actually made any plans for it. Until now.

When I heard that my friend Audrey loves to sew – and is amazing at it – I knew that handing over our wedding outfits to her was exactly what needed to be done. I asked her about it, telling her that I had done some searching but hadn’t found anything that I fell in love with yet (wait…another Pinterest solution fail?!). I suggested maybe a blanket to pass along to Jacob but that I had no vision in mind and she agreed, getting excited about the possibilities. 

I handed her a bag filled with my dress and Joe’s attire folded nicely inside of it. We were standing outside of a restaurant where we had just enjoyed lunch and she looked at me. “Are you sure you want to do this?” I smiled, “Absolutely!”  I continue to get more and more excited about the blanket just thinking about the possibilities!!  Audrey even asked me what our first dance song was, so she could listen to our song while she began working on it.

I have no plan or thoughts for this blanket, I simply know that it is in the right hands.

She wrote a bit about the experience here:  Sew Sew by Audrey Perrott