My apologies for the late post…

It’s been a long week post surgery. The surgery itself went quite well and frankly, I felt wonderful for the remainder of that day and most of the next. Then the weekend came and it was back to the insane headaches that leave me in tears in bed for days. I finally decided through gritted teeth and tear stained cheeks that it was time for a hospital trip. It’s not that I thought cancer was taking over my entire body but something has to give with the way that I’ve been feeling lately. 

Joe called my oncologist and spoke to him Sunday. As it turns out, my nurse practitioner was doing her rounds at the hospital that we were planning to go to so she was able to set up all of the admissions paperwork and initial consults for me so that there wasn’t any waiting around and I was guaranteed a bed. So, a bit of light packing later while Jacob finished a nap and we were on our way. I won’t lie, the ride there was horrible and the idea of an ambulance each way quite tempting but I thought better against it. We dropped little man off with Grandma (he was a little too quick to say good bye to us and go play) and went to check ourselves in.

We’ve only been here since Sunday night but I had my first official brain MRI with tissue expanders removed – wahoo!! I had a breast MRI when initially diagnosed to confirm tumor placement but that’s all folks. A brain MRI was exciting and nerve racking to finally have done. And guess what? It’s ALL CLEAR!!!  That’s right – I said it – ALL CLEAR!! TOTALLY STABLE FROM ANY BREAST CANCER IN MY BRAIN!! How awesome is that?! God is good, my friends. God is GOOD

Now, that doesn’t quite tell us what is causing the headaches – the horrible, debilitating headaches – but it does tell us that it’s not from a tumor in my brain. Hallelujah!
There is talk about wanting to do a spinal tap / lumbar puncture to grab a sample of the spinal fluid to be tested for infection or cancer. There is also the possibility of the headaches being a side effect of taking Afinitor or Afinitor mixed with Xeloda. So for now we are taking a break from those to see if it helps. Basically, we are trying a bit of everything to see what helps…which I’m ok with because of how unbelievable these have been!

We have received an incredible outpouring of love and support over this last week – even when folks didn’t know what was happening in our lives. We can’t thank you all enough for every drop of that LOVE!!!

Almost all of the crosses that have been ordered have already been shipped and received – I’m just LOVING the pictures showing up of them, keep them coming! Please send me a message if you think you should have received yours by now and haven’t.  💚

I’m not entirely sure when I’ll be released but I anticipate being behind on life a bit when I am out. I also know I’m behind on responding to texts, emails and messages so I am sorry already for that. I appreciate your patience as I work to get caught up, though it will take time. I feel like “relaxing” in the hospital should be just that….but it’s not. I spend the day covering my face from these insane headaches, trying different combinations of medications to to stop them, figuring out what to eat  without vomiting and trying to sleep in between. Blech.

Thank you for your continued prayers, support and love. 💚💚💚

Ordering Meghan’s Cross

WOW!! The response to donating for Meghan’s Cross has been nothing short of amazing!!

I understand that there has been some confusion regarding how to receive one, so I updated the Give page with how to order. I’m so sorry for the confusion!

Toni & Mark are already planning to spend some time this weekend making more but in the meantime, I can ship out orders purchased this week! I’m SO excited for everyone to be sharing in the love and faith Meghan’s Cross represents. 

Keep spreading that love! 💚

“I will bring you butterflies”

Every year for the week of Valentine’s Day, Jacob’s school has a Heart Art Sale. All the kids in school create a special piece of artwork (thanks to the amazing teachers!) and the art goes for sale to the parents for $5 each. As part of this sale, the kids learn about what philanthropy means and the proceeds are donated to a charity.

This year, Jacob’s school surprised us in a BIG way. They decided to donate all of the proceeds from the Heart Art sale to the Rallying for Red Phoenix fundraiser! They even bought Jacob’s artwork for us!  As if that isn’t enough to make me cry, an anonymous donor asked to match all of the proceeds from the sale. Wow. There are no words to express how this has made us feel. His school made us promise not to use the money towards any adulting – just something FUN for our family. They even suggested a weekend away at the beach – how perfect does that sound?!

Throughout this entire week, the school celebrated Spirit Week. They wore a different color each day and learned what it means to be a philanthropist. They have spent the whole week decorating the school with all of the art they have been working on this week, as the Heart Art artwork pieces are sold.

On Thursday, we picked up Jacob to find that the entire lobby was decorated as the Red Phoenix Beach! Each classroom chose a different piece of beach themed art to make and each child created their own masterpiece. They took all of these amazing pieces of art and created a beach – just for me. And wow, is it incredible.  The imagination, the vision and the depth of dreams that these children have is amazing. Truly amazing.

Then there was today. The color of the day was green and it was Red Phoenix Day!  Everyone wore green – many even wore a Red Phoenix shirt! Walking into the school today, I couldn’t help but smile with tear filled eyes. Seeing the incredible beach pictures, the art work made by all of the different classes and everyone – kids, parents & children – wearing GREEN…for me. Every time I thanked someone they responded by telling me that they should be thanking me, for being an inspiration to them. I’m just me. It’s you all that are so amazing.

Picking up Jacob tonight, the director stopped to tell us that she had a surprise for us and to stop on the way out. After picking up little man from the playground, we headed back to the lobby. There, the director came out of her office with a jar and two books.

The Jar.  She shared that the jar is a Love Jar for us, from all the kids in the school. It is filled with paper that is cut into the shape of mason jars and each child in the school decorated their own jar with their fingerprints or drawings or hearts or words just for us. The title of this post? One of the awesome jars I found in there.

The Beach Book. They made “Our Beach Book For Ms Meghan”. It’s filled with beach scenes, made with love. There are beach chairs, boats, fish, sharks, crabs, palm trees, lots of sand and the sun too. It’s…perfect.

The Book. All of the teachers and directors of the school wrote messages to Jacob in the book, “Mama, Will You Hold My Hand?” by Anna Pignataro. I was told to be ready for tears from the book but I imagine many will be from the notes to Jacob also. ❤

Amazing. As I hugged each of these incredible women, I couldn’t help but wonder how we ever became lucky enough to find this school. Not only do they adore Jacob and treat him like their own, they are unbelievably kind to us as well.  They are a part of our family and a reminder of just how blessed we are.

We are truly too blessed to complain. 💗

Getting organized!

I posted a few weeks ago about needing ideas for how to help organize the ridiculous amount of treatment related…stuff.  I received a call a few days later from Aaron, the owner of Bear Residential Construction in Zellwood. He explained that him and his wife read my blog and have been wanting to do something to help – and that helping with storage was right up his alley!  He asked to come by our house the following week to see what space we had and what supplies we were looking to store.  I was shocked and excited about the offer!!

Aaron stopped by last Monday, along with Mike from Team Gina. They were surprised at just how much stuff I actually have related to treatment – with more supplies for the PleurX Catheter on the way. They discussed options and thought that a large cabinet would be best, which we have the space for in our bedroom. It would allow us to consolidate all of my supplies, which are currently spread amongst the two bathrooms, a closet, my master bathroom sink and the top of the refrigerator, into one central location. I was giddy with excitement when they showed me what they had in mind and headed out to order supplies.

Aaron called me Friday to let me know that everything was on track and that they should be stopping over to install it today – which they did! Aaron and Mike ventured back over to our side of the town, bringing Tom from Team Gina with them, and with the trailer in tow. 

They spent a few hours installing the cabinet in our bedroom. They secured it to the wall, removed the baseboards so that it sits flush and even brought along childproof locks to keep Jacob out. The cabinet itself is amazing. They painted it to match the other cabinets in our bathroom, included adjustable shelves and it has TONS of storage space! It’s…incredible. It’s more than I ever envisioned and works perfectly to centralize all of my supplies – and in a place where I use them most!

In addition to the cabinet that they graciously supplied us with, they asked if we would like to join them for the weekend at the Team Gina Golf Tournament in April. Ummm…YES!!

AND!! We get to ride in the hot air balloon to help with the ball drop for the tournament. How cool is that?!

On top of the cabinet, the golf tournament and lots of laughs with the guys…they also gifted us a very generous donation towards my medical & prescription costs for this year.

To say that I am too blessed to complain would be an understatement. These men have made – and continue to make – a profound impact on my life and the life of my family. They are kind, caring, generous, loyal and funny. I am so blessed to have them in my life. 💚

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

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!

30 months…

I can’t help but laugh at the title. 😁😆😂😊 My sweet boy turned two and a half last night. How is that possible?!

I remember pregnancy, though it seems like a lifetime ago. I was blessed with the opportunity to become a mommy. As someone who once said she didn’t think she’d want a child – I don’t know what I was ever thinking.

I recall laying in bed next to Joe one night and feeling something like a fish swim up my belly real quick. It was gone in an instant and took me a moment to realize that it was my sweet boy stretching out in my belly.

 I remember laying on my couch one day while Joe was at work with my hand on my belly and feeling him push against the bottom of my round belly for the first time. Thinking about that moment still brings tears.

When driving or showering or picking out clothes, I used to talk to this sweet boy in my belly. Reading him books at night, mine or his, made me incredibly happy.

The first time he went to Life.Church in Albany, my belly danced along with the music. Every song, every beat, every lyric…this little light of mine was as happy as he could possibly be. He danced throughout my belly and didn’t stop for the entire service. I’d never experienced anything like it…it was like he was singing and praising along with me. I don’t think I stopped smiling that whole day.

I had crazy back pain suddenly on the 4th of July…come to find out, it was the beginning of his entrance into this world. I woke up just an hour or two after falling asleep and was convinced I had a sudden and severe kidney infection. I was googling it while running to & from the bathroom. I woke Joe up, convinced that I needed to go to urgent care. He hesitated before asking me if I was sure that I wasn’t having contractions. Well, shoot. I sure was…and they were already 5 minutes apart.

After a long birth and the doctor saying I may need to have a c-section, my little boy arrived in this world. I held him, instantly crying with Joe in tears by my side. Jacob, the name we decided on that morning because they needed to put something on the dry erase board, was bawling his beautiful first newborn cry. Through tears, as I held him in my arms for the first time, I told him how much I love him and wished him a very happy birthday…over and over again.

The last 2 1/2 years have not been easy. Those first few weeks of adjusting were hard, breastfeeding was a struggle initially and I thought all I did was mess up. As he grew and reached new milestones, I continued to be in awe of him. Everything about him shows how amazing he is. Even in my darkest moments, both before and after cancer, this boy has always found a way to brighten my day and remind me that this life is so incredibly special. 

Yesterday, we surprised him with a Mickey Mouse guitar because we saw it on clearance while picking up a prescription and knew he would love it. His smile was instant and he hasn’t put it down. Add in new sunglasses and flip flops for vacation and Mr Cool Kid was all set. Falling asleep with both of them is a testament to how much he loves them both.

As I lay here in bed, beyond exhausted from this challenging week and in a bit of pain, I am humbled. I am reminded that this little man, this sweet boy, this rockstar, this miracle…is mine. God knew the battle that Joe & I would face and he blessed us with this amazing gift to see us through it – every moment.

Jacob has his own thought process, has an infectious giggle and a kind heart. His smile goes on for days, he loves to play with his parents and he has a fierce love for his relatives.

He is my reason for never giving up. He is the reason I will fight with all that I have in me. He is why I push myself to be a better person. This boy that I call my son…he has my heart.

Another blessing…

Although we went to the same hospital for my scan, my bone scan was in a different room. There was a weird beeping noise in the corner of the room. When asked, the technician explained that it was a Geiger Counter. It started going off because I walked in the room. Sure enough, as I walked up to it, it started beeping faster and louder. I sure was radioactive! I think back to my first PET scan, where I truly was radioactive. I can’t help but smile at feeling like a superhero. So much has happened since then and so much has changed. Superheroes may only exist in books and movies but I like to consider myself among them. I may not have their total courage, abilities and strength but I have their determination and fight. And that’s what I continue to need. I’m glad these scans are a reminder of that for me.

I had a brief text with my oncologist tonight. My chest CT is not yet in but the rest of my scans are. They show very little change! My bone scan picked up cancer in my left pelvis (bone scan was clear last time despite cancer showing on the CT) that it identified as new, however that same spot was reported on my last CT so it’s not actually new. Encouraging news!

I don’t know all of the details yet since all the results aren’t in but I’m breathing a sigh of relief at the news I’ve received so far. It means another scan is stable, another cycle of treatment can be given and another 6 weeks until I hold my breath once again. I’ll take it.

Thank you all for your love, hugs, thoughts and prayers. I promise you that they do not go unnoticed. I love you all.

Keep spreading…

During my appointment last week, my blood was drawn and my tumor markers were taken.  They typically take a few days and I looked online for the results this past Saturday.  They are elevated, above the normal range.  For me, this has been an indicator of progression.  When they were up previously, it took a few cycles of Xeloda for them to go back down to the normal range.  I watched them decline a bit each time until they were normal.  I recently took a break from Xeloda of almost a month from mid-October to early November.  My hope is that my tumor markers are actually on the decline again, assuming they rose during the break, and that restarting Xeloda is helping to bring them back down.  This is my second week of my second cycle since restarting.

Is this update concerning?  Yes.  Is it scary?  Of course.  Do I wonder what this means?  Absolutely.

But…

There is nothing I can do for now.  I had obviously hoped that I would have a break, which I may still, but I also may not.  I have planned scans next week and blood work, including my tumor markers, the following week.  So there is quite literally nothing that I can do right now.  I am still looking into alternative options (essential oils, detoxing and looking into a doctor that specializes in alternative treatments), while I also know that there are clinical trials and standard treatment options available to me.

So, what does all this mean?  Well for now…nothing.  I saw the results, I feel the same physically and I already have a path forward to find out whether or not there is progression.

Well actually, I can tell you what this means for me.  It means that I keep living my life.  I keep working, I keep decorating for the holidays, I keep shopping and planning out gifts, I keep making plans, I keep loving on my family and friends, I keep snuggling my sweet boys and above all…I keep spreading the love.

Yes, life is stressful.  Yes, there is always fear of the future.  But I am continuously shown love from my family and friends.  I am so incredibly blessed.

And that, my friends, is what matters.  Spreading that love, accepting that joy and embracing all that each and every day has to offer.  That is what makes this life so magical, so wonderful.

Keep on spreading that love, my friends.  Every bit of it matters…promise.

Thanksgiving…

I have been thinking about traditions and blessings today. I read my post from last year and couldn’t help but smile at the traditions we share and Joe’s first Thanksgiving with my family. I remember many Thanksgivings, though many meld together in one happy memory.

I remember my dad making popovers every year and if they didn’t come out just right, he would try again…and again…and again. We would often have a few dozen popovers half risen before dinner. I recall the first time that I made popovers for Joe and, though he thought me crazy at first since he had never heard of them, he enjoyed them so much that we ate them for dinner with gravy all by themselves for about a week straight.

My mom’s mom would always make fresh made biscuits from scratch and would let us grandkids cut out the circles. I remember being propped up on the counter or standing high on a stool while she rolled out the dough and showed me the best places to fit a circle.

I remember the first year that I sat at the “adult” table at my dad’s sister’s house and felt a little sad that I wasn’t at the kid’s table. The next time I sat at the kid’s table.

I made green bean casserole for Joe’s family one year and somehow managed to mess that up despite it being the canned kind. I have since learned to make it from scratch and that seems to come out alright.

I know how proud I was of Joe when he cooked our first turkey in our home. We hosted his parents and were determined to make it perfect. It was perfect because we were blessed with family by our side.

Opening the windows and letting in the beautiful fall breeze wasn’t an option in New York. But it’s something that I have grown quite fond of in Florida. The year that we served appetizers on the back porch while watching the birds play in the yard is one of those times that I was so grateful for Florida weather.

Pecan pie was always a staple in our house growing up. I would typically stay up late the night before with my dad making two pies for the next day. We made two this morning too.

One year at my aunt’s house, my cousins and I were jumping on the bed (a no-no) and I heard my older cousin come in from work and say “I need caffeine!”. I had no idea what caffeine was but I was parched from all that jumping and needed some. I expressed that to my parents, aunts and uncles upon walking downstairs and they looked at each other and laughed, knowing I had no clue what it was. I drank my water and smiled, oblivious to how big of a role caffeine would eventually have in my life!
When my baby sister ventured to Florida for her first Thanksgiving a few years ago, the Brown-Hall-Rivers-Thanksgiving-Extravaganza began. We have celebrated together each year since, taking turns between our states. Though this year was Florida’s turn, we were anxious for fall weather and with all of our recent travel, Georgia made sense. I imagine this is a tradition that will not ever end.

When Jacob was born he sat at the head of the table and we made hand turkeys on a table runner with him each year. It’s a new tradition that I love so much.

This year, we were surprised with wrapped gifts on our plates. Our brother-in-law has a family tradition of receiving a new Christmas ornament from his mom every Thanksgiving. This year, the three of us were blessed with this wonderful treat of a tradition – one that I may have to begin myself!

As I write out these few memories that make me smile and warm my heart, I cannot help but think about how blessed I am. This time last year, I was mid-IV chemo and completely bald. It seems like a lifetime ago and yet just the other day. This year, I have my family by my side as we celebrate this holiday and create new traditions.

As I see all of the smiling faces and delicious meals on social media, I smile at all of the wonderful traditions that surround us. We are so blessed to have the most amazing people in our lives, incredibly lucky to be here to celebrate this day and so loved as we acknowledge the lives that we have lived so far.  There have been many memories created and there are still so many to be made.

I hope you all enjoyed this holiday with your loved ones and snuggle them hard tonight. Happy Thanksgiving, my friends! 🦃❤