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

Surgery day

Whenever I have a job interview that I have a choice at scheduling, I prefer it first thing in the morning. I’m usually up early to ensure I am fully prepared, dressed just right and frankly, ready to get it over with. Having an interview first thing in the morning allows me to take on the rest of the day without being too focused on the position that I am applying for. Sometimes, when an interview is later in the day, I will get lost in my work and all of a sudden a reminder will go off that it’s time and I’m off to the interview in a whirl – needing a moment to compose and prepare myself.

For the surgeries that I’ve had so far, they have all been in the morning so there wasn’t a lot of waiting around – especially with the no food/water for 8 hours prior rule. Since my surgery today was originally supposed to be after my plastic surgeon’s surgery, it’s later in the day. I woke up early to have a small bite to eat and drink a bunch of water, since my cutoff time was 730am. I’ve been napping most of the day, as I couldn’t sleep very well last night. Aside from the slight anxiety about surgery (I watched YouTube videos yesterday, yikes!), my chest pain has been getting worse and I have a cough to go along with it. It’s also quite hard to breath and I find myself winded just by reaching for something. I imagine there is quite a bit of fluid built up in there by now. So I didn’t fall asleep until late. I don’t have much of an appetite currently but the naps this morning helped me not to think about food or water.

So, now I’m off to do a few last minute things before surgery and then headed to the hospital. I have to be there at 130pm for a 330pm surgery. The surgery should only be about 45 minutes long and I will be asleep for it (thank goodness after watching those videos!). Then I’ll be in post-op for a bit, where they will wake me from anesthesia and monitor me to ensure I’m aware. Typically, they also like to see me eat something small like pudding or applesauce too because of the anesthesia. Then, we will head home! Joe will post something online letting everyone know once the surgery is over.

So off we go! Lots of prayers for a successful surgery, removal of the fluid, little to no pain afterwards and a nice night of sleep after the anesthesia.  Here’s hoping! 😉😘

Going flat.

I mentioned the other day that I met with my plastic surgeon so that they could look at my radiation wound and determine what to do with it (whether or not to debride again). During that conversation, I asked if the breast cancer on my skin would inhibit the surgery, since there are bumps on my chest. He stated that it would not but then went on to discuss his recommendation not to do reconstruction. This came as a bit of a shock to me, as he has been a big advocate for doing reconstruction originally. Given the extensive radiation that I’ve had to both sides and the fact that I still have open wounds from the second round of radiation that ended mid-September, there are concerns. Wound healing aside, there is also a concern to adding a foreign object (the implant) to my body. My body may heal perfectly, but adding something else for my body to heal around is concerning, especially given how hard it is fighting against this cancer already. My body is already weakened. Adding another element to the healing process with a weakened immune system and knowing there are already healing issues is not recommended.

Obviously my life is more important than a reconstructive surgery. Setting that fact aside, this may be one of the hardest things that I have had to deal with throughout this entire cancer experience. Since the very beginning, reconstruction has been my “light at the end of a long tunnel”. I endured the placement of tissues expanders for over a year as well as the expansion of those expanders, which – to put it nicely – sucked. I have dealt with an uneven chest for most of that year – perhaps a month of that year I had an even chest. My self-esteem has wavered throughout this last year, I have been uncomfortable & tight more times than I can count and yet I’ve dealt with it. …because eventually I would have reconstruction. Eventually I would feel somewhat normal again. Eventually…I wouldn’t have surgery looming and I would be able to find comfort in my new body.

Late one night last week, I received a call from my plastic surgeon’s office indicating that they want to do surgery to remove my tissue expanders as soon as possible. We discussed this for a bit. I mentioned that I will be having the PleurX Catheter inserted semi-permanently and that I would prefer to coordinate both surgeries rather than have two separate surgeries within a few days of each other. The next few days were spent trying to coordinate just that – and surgery for both the catheter and the expander removal was set for next Tuesday.

When I went to my pre-op appointment on Friday, I asked what caused the sense of urgency. My doctors had been discussing when I will be able to have MRIs again and this prompted the question of why we were waiting to remove my tissue expanders. After discussing with us further, my plastic surgeon asked if I would be willing to wait a month before having my expanders removed. I would have the catheter placed on Tuesday regardless because that cannot wait, but the surgery to remove my expanders would be done in a month’s time.

The fluid was removed from my expanders on Friday, which is not exciting for me. Yes, the pressure is gone, which is nice, and I no longer knock into my chest whenever I move my arm. But there is a nerve causing some pain under my armpit on my left side from the pressure change and the ribs on my right are actually indented slightly from the pressure of the expander. Combine this with the actual removal of the fluid and I’m saddened by the appearance of my chest after all that I’ve been through.

By waiting a month, the hope is that the skin around my expanders will contract around the deflated expanders. This will not only mean that there will to be less skin post-surgery but it will also allow for smaller incisions during surgery. If I had surgery on Tuesday, I would need large incisions to remove the expanders and some of the skin around it. By waiting 4 weeks, the skin will hopefully contract and therefore will not need to be removed so smaller incisions can be used. Having smaller incisions means that the surgery is less risky in terms of the recovery. We know that I am having issues with healing already because I am still dealing with the radiation wounds. Smaller wounds means smaller area that needs to heal. He will basically be able to cut a small incision under what was once my breast and slide out the expanders from each side. I would also need to go off of Xeloda before, during and after surgery to ensure there is no interference with the healing process.

I asked if it was concerning to have two surgeries within a month and he stated that it was not. Having two surgeries will allow me the opportunity to heal from each without worrying about the other. On Tuesday when I have my catheter put in and begin having a home nurse, I will be able to focus solely on learning that process rather than learning that and having to deal with the two drains from the expander removal. I’ll be able to heal fully from each without being distracted by the other.

I know that’s a lot of information to process and the last few days have been a bit overwhelming as we did just that. The plastic surgeon was comfortable with either decision, however one of my deciding factors was that doctors don’t typically recommend something unless they have a true reason to believe it is the best thing to do. I also feel that if there is something that I can do to make things a little easier for my body, then I certainly want to do that.

So, that’s that for now. I will have my catheter placed on Tuesday and then have my expanders removed in about a month. It’s still not easy for me to move past the fact that I will not be having reconstruction but it helps to have the fluid removed from the expanders now. It’s allowing me the opportunity to get to know my new body. The plus side? This will require a new wardrobe that will be most flattering to my new figure. I suppose I should start saving my pennies now for just that! 😉

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!! 🐟🐠🐡🐙🐬⛴🌊