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!! 🐟🐠🐡🐙🐬⛴🌊

Today is a good day.


Joe & I ventured off to my scans bright and early today. I haven’t done full scans (neck, chest, abdomen, pelvis) at a local imaging center before because I also usually have a bone scan, which has to be done at a hospital imaging location. I must usually wear leggings too because when I arrived in jeans today, I was asked to change into scrubs to eliminate the metal button on my jeans. These pants had me cracking up! They had a rather large expandable waistband that tied at the waist and the legs were loose. The pants were actually super comfortable and I could totally sport them. These pictures had me cracking up though – I look so silly! The pants created a good laugh at the start of this long day.

The scans themselves were uneventful. For CT scans, I typically receive them with and without contrast. This means that I often have to drink a combination of water and contrast 2 hours ahead of time, they do a scan without contrast and then they inject contrast into my veins and scan again. When I go to the hospital, I have to arrive 2 hours early and drink the contrast on site then wait the 2 hours. They typically try and schedule the bone scan, which requires its own separate injection, during this time. I just recently learned that when I go to the hospital, I can have the script (for scans) written to have my port accessed. Since I went to a local imaging center today, I had to pick up the contrast last week so I could drink it at home prior to my appointment today. Much more convenient! They don’t have a registered nurse onsite so they had to access my veins for the injection instead of my port. I find it interesting that they wouldn’t train the technicians to access ports. It’s much more convenient, in my opinion.

I asked to ensure the scans were read STAT and my doctor had the results within an hour. Off I went to my appointment there next. I saw the Nurse Practitioner today. There was a rather long wait, which I debated spending on the exam table taking a nap (seriously tempting with how exhausted I am most days) but she came in cheerful as always and spent almost an hour chatting with us. I had a list of questions, which she joked was not unusual. My first question was about my scans. As she pulled them up, I expressed my concerns with progression, why I felt it may be happening and mentioned my tumor markers.

Aside from slight progression in my right neck lymph node and 2 areas of my spine, my scans are stable. Stable! This is such wonderful news!

My right neck lymph nodes showed some activity but it was considered minimal. My spine had some interesting activity that was indicated as stable but not listed on my report from December. My left iliac crest (pelvic bone) is not distinguishable on the exam – that’s right they couldn’t see it! – and my right iliac crest was stable. My lung and liver are clear, though I do have pleural effusion yet again on my right lung. It is already of moderate size and is indicated as also partially against my back, which explains the pretty bad pain that I have.

Stable. Ahh, such a sweet word. Yes, slight progression but overall stability. I’ll take it.

We talked for a while and she talked to me about the possibility of taking Xeloda again but this time combining it with the Afinitor. This is an interesting suggestion and not something that we have pursued. Aside from the pleural effusion, I had a good amount of stability with Xeloda. So perhaps combining it with Afinitor will help eliminate this cancer.

After I left, I headed to my appointment with the radiation oncologist. While waiting in the room, my oncologist called and talked to me more about Xeloda. We discussed side effects of before, that there aren’t a lot of studies about doing it and what it would potentially mean for my cancer. We decided it will be worth trying to see how I tolerate it and how I feel after the first week or two. This should be interesting…

My meeting with the radiation oncologist was good. My radiation wound is not yet fully healed, though it is slowly, ever so slowly, getting smaller. We discussed having the tissue expanders removed and she wanted to talk to the plastic surgeon about it to understand the logistics of that surgery. More to come on that.

So, though today was incredibly tiring, involved a lot of conversations, questions & learning and started early while ending late…it was a good day. A really, really good day. Stable. Ahhh, yes.

…and those pants! 🙂

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

My jam! …and my reasons.

Today, church talked about all pain having purpose. Whether or not we see it or feel it or even understand it – the purpose is there. Whether the pain is physical or emotional pain, the purpose is there. There have been a lot of things happening recently that have given me pause and caused me to stop making excuses and instead make changes in my life. Any obstacle or excuse that I have found has been, quite literally, alleviated before I even had a chance to concern myself with it. I cannot help but see that God has a plan and a purpose, even if He isn’t showing it to me yet.

I’ve mentioned previously that scanziety is very real. Whether you feel great or crappy, there is always a fear when scans approach. Even as recently as December, my doctor was 80% sure my scans looked stable and then – POOF! – cancerous fluid is present, and I didn’t have any symptoms. I’ve been through quite a few scans over the last year & a half – some have been great and others, well, not so much. One thing that I’ve learned is that I cannot change the outcome of the scans. I can only change my perspective of them.

So as tomorrow’s scans quickly approach, I decided that it’s better if I share how I feel physically. I think this will help me to better prepare myself for any news that may or may not come. It is not helpful to worry unnecessarily or spend time fretting about what may or not be. I need facts, conversations with medical professionals and to remain calm. That being said, scans are always something that I try to turn a blind eye to because I don’t want to spend too much time or energy thinking about them beforehand.

I pulled up my tumor markers yesterday, from Wednesday’s blood work, and saw that they were elevated. You may recall that they dropped back on January 5th – which had me jumping for joy. Unfortunately, they are back up again…and higher than they were in December when I stopped Xeloda. My CEA is 16.3 and my Cancer AG 15-3 is 26.7. Yuck.

When I saw my oncologist back in the beginning of January, he had shared that even if my end of January scans showed progression (depending on how much), that he may not change my treatment yet because typically new treatments take 10 – 12 weeks to be in full effect. I don’t know whether or not the fact that my tumor markers were initially lower will factor into that. I imagine that my scans will play a significant role in that decision as well.

I will say that my lungs were full of cancerous fluid when I had my blood drawn – over 1700 ml of it…enough to warrant a procedure to implant a permanent catheter. I don’t know if this matters in terms of tumor markers or not. Perhaps Afinitor doesn’t have the opportunity to work fully on my cancer because it can’t keep up with the fluid build-up in my lungs. Who knows – I don’t even know if that makes sense medically. 😉

Some parts of my skin look significantly better, such as two of the areas above and below my radiation burn that have been quite painful since September. Both areas appear to be healing, which they haven’t done much of in the past 5 months. My skin lesions, on the other hand, aren’t looking as good. They don’t look a whole lot worse, mostly just redder and perhaps one is big enough for a trial now (it may be slightly too small still), but also there seem to be just a couple more than there were a few weeks ago. There weren’t any new ones popping up initially – which was fantastic. That may have changed.

The lymph node on the right of my neck that was previously swollen – and then disappeared – seems to be venturing back into my life. My jaw also suddenly hurts when I yawn, so I’m not sure whether or not that is from Xgeva or a cancerous node.

So that’s where I’m at. Oh, and I’m tired. My platelets have suddenly risen (another concern of mine that Afinitor may have stopped working) so I can’t blame them for my fatigue. It is on my list of questions for the Nurse Practitioner tomorrow though. It doesn’t seem to be getting better, despite my numbers changing.

I’ll admit that when I first saw my tumor markers yesterday, I was a bit distraught. It was the one thing that I was holding onto that would tell me all of these other things could be explained away. Seeing that they had jumped, and higher than December, hurt. A lot. Frankly, I was angry. I can’t catch a break with treatment! My cancer is just too dang smart – it keeps mutating to beat out any chance of it dying off! Why do I keep trying when cancer just continues to win?!

Yes, I was yelling – mostly at the Universe. At that moment, a new song came on the radio and Jacob yelled “This my jam!” and put both hands up the air to dance along while singing to the music. I took a deep breath and smiled.

This is why. Right here. Jacob, Joe…my family, my friends. This is why I continue to fight. This is why I don’t let progression or tumor markers deter me. This is why I will unearth every possibility for treatment that I possibly can in order to live out every single moment of life that I am able to. These boys, these are my reasons.

I may not know what God has in store and I may not know what the future will bring but what I do know is that I am meant to be here now, in this moment. I will not waste my time worrying or being angry about this cancer. I won’t waste my time concerning myself with things that I cannot control. Instead, I will stop, change course and redirect. Because that is the only way to move forward.

Organizing Help!

Before Jacob was born, I was in a pretty decent nesting kick. All of the things around the house that were on the “someday” list suddenly became “must dos” and I was on a roll. Over one weekend, I cleaned out and organized all of my cabinets & drawers in the kitchen and the bathroom. They were nice & neat – it was wonderful!

Fast forward about three years and though my storage solutions are still in place, they aren’t quite as tidy as they once were. My latest battle is the bathroom storage. As you know, I’m on a decluttering kick and trying to eliminate a lot of unnecessary things from my life. Couple that with all of the medications and medical supplies that I need, along with all of the supplies that will soon become a regular event with the PleurX catheter, and there’s just too much.

So, I’m turning to you for HELP! I am looking to organize under all of my bathroom sinks (2 bathrooms but 3 under sink areas). In addition to the normal stuff such as lotions, hair products, cleaning items, makeup, tooth care, shaving items, travel toiletries, band aids, sunscreen, baby items, extra shampoo/conditioner/soap, etc., I also have a lot of medications. Not just day-to-day things, which I store separately, but others as well. My insurance requires that all daily medication (even if still testing out the amount), must be bought in 90 day supplies so I have quite a few bottles of medications. I also have lots of products for wound care related to my radiation burn (still not healed) and I keep all of my essential oil supplies here as well. Draining the PleurX catheter will require a station of its own supplies so I need a space to store those items as well (oops, need to add purchasing those supplies to my to-do list too!).

Add all of that together and there just isn’t enough room! I am sure there is a better way to organize things so here I am asking for help. J I’ve been scouring Pinterest and I’m surprised to say I have not found many fabulous ideas…it’s not often Pinterest doesn’t come to my aid.

What tips and tricks do you use for storing all of these different items? Is there a certain way you like to organize things? I saw stackable storage containers on Pinterest – are they the best way to store things to maximize space?

Feel free to share pictures! Any and all ideas are welcome. I am quickly running out of time before surgery and would love to have everything organized before then since I won’t be able to move my right side a whole lot at first. Thank you!