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.

💚

Advertisements

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!!! 💞

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 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.

Rallying for Red Phoenix – April 1st

As you may know, there is a fundraiser being held in my honor on my birthday! It is being thrown by incredibly kind friends & family who are jumping high with hands raised to see how they can help. You all are AMAZING!!!

There was a Save the Date sent via a Facebook invite on my IamRedPhoenix Facebook page. As of yesterday, we have a venue!! A restaurant near work (to be shared soon) has asked to donate their space for the fundraiser! Joe & I used to frequent this location for their happy hour pre-Jacob and it has been one of my favorite places for years for happy hour, date night, dinner with friends and even a dear friends baby shower. They have a room off to the side so that we will have our own space, there is already a musician just for us AND it’s less than 5 minutes from daycare!

We are working out the details and will share them as they come!! The exact time should be confirmed soon but the day is definitely the fabulous date of my birth – April Fool’s Day! This awesome night of fun will be an opportunity to come support my family and me, as well as celebrate my 33rd birthday!

The night is sure to be AMAZING and beyond MEMORABLE! There will be awesome raffles, games, prizes and MORE!!

Jacob’s school has graciously offered to open up their site for the night! Every teacher at his school has generously volunteered their time.  Parents will be able to drop their children off at The Learning Experience during the fundraiser. The kiddos will have a night of fun playing games, doing arts & crafts and maybe even a movie! The times will align with the times of the fundraiser (more to come). If you have questions or would like to sign your child up with TLE, you can call or email them. I’m also here for any questions or concerns. 😊

We have received half a dozen raffle items already! If you would like to donate a raffle item or know someone / a store who does, please let me know – the more, the better!

I’ve received questions from people who want to help with the fundraiser – whether it’s day-of help or prep work before. If you’d like to help, please send me an email at IamRedPhoenix10@gmail.com I’ll be sending out an email to all volunteers this weekend to discuss details.

A new page has been added to IamRedPhoenix.com called Give. You can donate any amount or use this page to donate for a wristband. Oh – and the wristbands are available in adult or children sizes!

This fundraiser is a reminder of how incredibly blessed I am. No, this cancer diagnosis & prognosis are not awesome. And yes, I have been in pain for a few weeks. But none of this can be helped- I simply want to embrace and enjoy the moments that I have. Being able to celebrate my birthday surrounded by friends & family is one of the most amazing blessings that I could ever receive.

Hopefully we will see you all there on April 1st!