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.

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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!

My room. 

I started thinking about new year’s resolutions a few weeks before 2016 ended. I had a few things in mind…not so much resolutions but things that I wanted to change in my life.  Time slipped by and these got away from me a bit. I kept meaning to implement these changes or make progress on them but it was never at the top of my list.  The last few days, I was reminded that time will always continue to pass. I will always find an excuse or a reason not to fit something in or to change priorities. If I don’t implement the goals that I want to see, then who will?  No more excuses.

I looked at my goals for 2016 and for the most part, I was successful in the things that I was able to control. Being re-diagnosed with Stage 4 doesn’t necessarily change my goals but it does change the perspective that I have when making them. A lot of things that popped in my head are changes that I’ve been wanting to make anyway and just haven’t gotten around to it. So wrapping them up with a pretty green bow and calling them 2017 Goals is the way I’m incorporating them into my life.  It is Chinese New Year today, after all! 😊

One of the goals that I set for us is my One Line a Day book. Another is sleeping routines.

I was gifted these books by two different ladies at the end of 2015. They are 5 year journals but you only write a few lines for each day. It’s usually something memorable that happened or something fun that we did. Or maybe we had a visitor or Jacob did something I never want to forget. I’m pretty good about keeping up with them, though sometimes I fall behind and I’m struggling to remember what funny or special thing happened a few days ago. Having a memory that is failing does not make this an easy task. One goal this year was to include Jacob in these entries each day. He’s talked about it before and I’ve asked him what to include but I wanted it to be something he looks forward to each night. Since it’s a new year, this time when we open the book to a new day, we have last years entry to read. It’s exciting to reminisce on what we did this day last year or where Jacob was developmentally. 

One of the comments that filled almost every day for the first week of the year was about Jacob sleeping in his own bed. Nap time, bed time – even sleeping through the night! My goodness, it was going so well last year – what happened?! Radiation in April/May, that’s what. Halfway through and I was too exhausted for middle of the night wake ups or hour-long (and then some) bedtimes. Coming into our bed in the early morning turned into halfway through the night, turned into barely an hour in, turned into “Bedtime, Jacob! Hop in between Momma & Dad-dad.” The rest is history. 

I love Jacob sleeping in our bed – I do! He is such a good snuggler, he hugs me for no reason and, well, there is nothing quite like waking up to his smiling face telling me good morning (“it’s not too dark!”). But he often wakes up before he should because Joe & I are getting ready for the day. Or he goes to bed too late because we are finishing something up before bed.  For those reasons and more, we felt like it was time to try his bed again. 

We have been talking about it with him a lot, especially when we were on the cruise and going home to his big-boy bed. But we haven’t made any actual attemps yet. So this afternoon when Joe asked him where he wanted to take a nap, we were both surprised that his answer was “my room”.

It took a while, a walk around his room, lots of snuggles and some singing but it happened. After some ninja moves to leave the room, we were shocked that he slept for his entire 2 hour nap in his bed. Dare we try bedtime too?!

Since Jacob was in my tummy, I have wanted to start reading him different book series at night. Many are books that I’ve been wanting to read and others are from my childhood. I visited a used book store at one point when he was only a few months old and bought treasures just for that. They have been patiently waiting in his closet since, for me to look at every time I opened the door.  

Hours before bed, we started to tell him about our new routine. We continued to prepare him all night. When his jammies were on and his teeth were brushed, we asked him where he was sleeping tonight, “my room”.

And so it began. We laid in his crib and I read the first chapter of Harry Potter to him. He was fidgety at first, rolled around a lot, talked to his animals as well as himself…and eventually fell asleep. I don’t know that he actually listened to the chapter at all but tonight was priceless to me. 

Eventually, I want to record myself reading to him but for now, we have completed the first of many nighttime readings that are still to come. 

Here’s to 2017 goals!

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!

Sweet gifts

Returning from vacation is never easy – it’s like you need a vacation to recover from vacation! 😉 I have updates to share but instead I want to focus on saying thank you.

This weekend, we returned from our cruise to an empty fridge. Of course this is expected, I certainly don’t want to waste food while away! So what did my dear friends do? They stocked my fridge. They each loaded up on fresh fruits & veggies – local & organic! – and helped to make sure that we came home to the most amazing array of fresh ingredients. We have been eating so wonderfully and will continue to because of the sweetness of many dear friends.❤

Then today, we arrived home after a long first day back to work to a surprise gift – someone sent me a Love Jar! Technically it’s called “a little jar of sunshine” and was sent to brighten my day – but it is absolutely filled with love! I just don’t know who to thank for such a thoughtful & wonderful gift- it was so sweet!

I also received a hand crocheted hat & glove set in metavivor colors! A sweet woman in Indiana hand made this set for me because I made a donation to Metaviver – how cool is that?!

So today, despite being a good yet trying day, was filled with some much love and sunshine. I have the absolute greatest friends anyone could ever dreamed of. Keep spreading that love!!

Home safe

It’s crazy that just a week ago tonight, we were enjoying our first night on our cruise. Tonight, we are snuggled together, home safe.

The trip was wonderful. Joe’s parents accompanied us and we took the Norwegian Epic for a week visiting Cozumel, Grand Cayman, Jamaica and their private island in the Bahamas. We met wonderful people from all over the world, we tried new things in places that we have never visited and we took time to relax and enjoyed the open water on our balcony.

Jacob loved every moment. He swam in the hot tub, played in the splash pad and let the waves crash over him in the ocean.  He made friends with all the staff, giving big hugs before we left. Joe & I enjoyed a date night and spent a few hours alone while we enjoyed dinner and (re)explored the ship. We made so many incredible memories.

I won’t pretend that the week was perfect but it was for us. We adjusted our vacation to ensure none of us were uncomfortable. I took it easy & napped with Jacob almost every day, I have pain in my chest still but hopefully that will eventually go away and I didn’t swim quite as much as I may have before because of the wound in my chest. But that doesn’t mean that this trip wasn’t amazing – because it was. 

Tonight, we are home safe and were able to relax today and settle back in. Though we have lots to do before heading back to work & school, we will enjoy the last few moments of vacation before heading back into our routines again.

Hopefully you have all had a wonderful & fun week and you are all able to enjoy this weekend!! Keep spreading the love my friends.

Oh, Jamaica…

We awoke Wednesday morning to the boat rocking heavily and the windows being pelted with a bit of rain. The wind was intensely whipping about the balcony as well. The sky was a little angry but it all faded quickly and the sun came out from behind the clouds.

We ventured off of the boat and chatted with a few people but didn’t love the tours being offered just yet. We wandered outside of the port and started chatting with a man about what our goals were for the day. We ended up meeting a man named Dwight and having him show us the island.

We rode through a bit of the rainforest, traveled up the mountains and saw the spectacular views looking out over the ocean. Stopping to smell the leaves of different plants (all spice and lemongrass grow freely!), we also learned about the different fruit trees growing around the island. We stopped by the local Dunn River Falls and peeked at the water cascading over the rocks.

Next, we headed to Bamboo Blu beach and set up – Jacob couldn’t get into the water fast enough! It was that beautiful, crystal blue again and our sweet boy couldn’t wait to run into the small waves.

Joe & I left Jacob to play in the waves for a bit while we went on an adventure. It’s something that I put on my list of things to do before turning 30 but never actually did. It’s something I’ve seen pictures of and thought – someday I will! Well, today was that day. Joe & I went horseback riding. 

I remember a week long trip in Girl Scouts when I was young. We went to a farm of sorts and one of the activities that we did a few times throughout the week was horseback riding. I remember feeling as if I was high off of the ground and a little afraid of the height but truly enjoying the experience. 

Dwight took us to two local guys just up the road from the beach. We received a great price for the hour that we wanted to ride. We hopped on our horses, Crystal and Cindy, and I had a moment of panic when she first started moving.

What are you thinking?! This is so high! What if you fall off?!

But I swallowed those fears, put on a big smile and braced the moment. I will do this! So off we went.

Joe & I traveled up the mountains through the town where the locals live, saw goats – young and old – eating the tall grass, saw a community garden where anyone can grab fresh fruits or vegetables for their meal, they simply need to replace it with a seed or two and Joe even picked me a bright pink hibiscus. Our guides told us stories about the town and shared the different things they do to keep busy. At the top, we saw the breathtaking view of the water below. We headed down the mountain through the town and into the some of the wooded area by the beach. We learned about the trees that only grow in the shade and I may have bumped my head on a few branches along the way, despite the warning of doing just that.

Eventually the trees opened up to show the dazzling blue waves of the ocean. Our guides stood back while Joe & I rode our horses into the water. It was clear that Crystal & Cindy love the water as much as we do. They trotted through the waves, the water lapping up over our thighs. They stopped to play in the water, flicking it up over their heads and onto us. I don’t think the smile came off either of us the entire time.

After riding in the water a bit and learning about local fishing, we headed back. I trotted up ahead of Joe & turned around to see him racing up the trail behind me. His grin was from ear to ear. The trip was amazing. It may have only been an hour of our time but the memories are completely priceless.

Dwight brought us back to the beach where Grandma & Grandpa were playing amongst the waves with little man. He wasn’t too interested in chatting with us upon our return, as he had his own ear-to-ear smile from the ocean. I sat with him in the waves, while we picked out the big & little waves and braced ourselves for when the water rushed over us. We said “ew!” at the seaweed floating in from the reef and dug holes in the sand. The hours flew by and before we knew it, it was time to head back to the ship.

Dwight met us and drove us back, telling us more about the town on the way. He was a wonderful tour guide and I would absolutely book him again if we return. (And you should too if you head to Ocho Rios!).

Once on the ship, Jacob took a bath overlooking the water. Despite his shower before leaving the beach, another pound of sand may have come out of his bathing suit. He loved holding the spray shower head over him and “wash my chest and wash my legs and wash by tooshie…”. Seriously, just too cute!

A nap before dinner was needed after such a fabulous day.