“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. 💗

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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!

Please, just be kind.

When I wasn’t sure what the status of my chest x-ray was this week, I called the place that I typically go through for CT scans to see if they had obtained my script and just hadn’t contacted me yet. It happens, I’m sure. A kind woman answered the phone, listened to my story and searched her different systems for the order. She explained that it had not yet arrived and wasn’t anywhere in their pipeline, apologized and recommended that I ask my doctor how and when it was sent. I agree to do just that, thanked her for her time and for looking. She replied with a bit of shock, saying “Well thank you, Meghan. I appreciate your kindness and for being so understanding. It truly is appreciated.” When I shared this story with my husband, I asked if people are generally unpleasant and he remarked that unfortunately that seems to be the reality.

In December when I initially had pleural effusion, the pulmonary doctor’s office called me and asked if I was available to come in first thing the following morning. The key word here being asked – it was not a statement but a question. I informed her that there was literally one meeting that I could not miss or rearrange and it was the one the following morning. My husband was receiving a surprise award and I had the incredible privilege of surprising him with it, in front of his entire department. There was no way that I would miss it, fluid or not. The woman’s response to me was, “So even knowing that you have fluid in your lungs, you’re not willing to miss this meeting?” I am sure you can interpret the tone. “I’m sorry but no. I tend to be quite flexible and this is probably the first time that I’ve ever said no to an appointment time. I can literally do any other time tomorrow or the next day.” I told her the earliest that I could arrive was 10am the following morning because it was downtown, about 45 minutes from my office and over an hour from home. She said she would check with the doctor to see if he would be willing to work me in later (A conversation that I imagine went something like, “I’ll take her whenever she can get here, it’s totally fine.”) She called me back and told me that I could arrive at 930am. Sure. I arrived at 10am and guess what? No one was concerned. The nurses and the doctor was incredibly kind and minus the front desk lacking any sense of politeness or friendliness, I was quite pleased with how the doctor was ensuring that I was cared for that very day.

When the nurse at my oncologist’s office called me yesterday to let me know the fluid was back, she indicated that she would also call the pulmonary doctor and have the fluid drained before vacation. I anticipated a phone call last night or early this morning but hadn’t received one by 10am so I decided to call. I had just seen the plastic surgeon and was a little distraught (at no fault of his – I’ll get into that later), so I was on the verge of tears already.

The appointment desk receptionist answered the phone and I squeaked out that I needed to make an appointment as soon as possible to have fluid removed from my lungs. With no acknowledgement and a bit of annoyance in her voice, she took my information to pull me up in the system and placed me on hold to review the schedule. She returned to inform me that I could be seen mid-February. I explained through tears that I was leaving on Saturday and that my oncologist had already called to ensure I am seen prior to this weekend. I explained that I have pretty intense pain in my chest and that I am having difficulty breathing because my right lung is only filling up by half. With no apology, she advised me that there was nothing she could do sooner. At this point, I couldn’t hold back the tears and they freely started falling, which caused my voice to crack between words. I explained that the last time this happened, the doctor fit me in the following day despite a full schedule. I can obviously have my oncologist call but I am trying to make the appointment myself. I reiterated that I’m having shortness of breath, assuming that this would spark some sort of “urgency”. She indicated again that there was, quite literally, nothing available for me and nothing she could do until February. I indicated that I would have my oncologist make the call and get in this week.

I will pause here. I mentioned before, a long time ago, that there are times where I am treated as a number and not a person. I find this rather interesting because I have yet to meet a doctor or a nurse that I didn’t like. They are always incredibly kind and often sit with me a little longer than they need to in order to chat about what’s happening in my life – regarding cancer and not. The front office staff though, I often find to be a little less friendly. There are exceptions to this rule of course, like my oncologist’s office staff who knows me by name and asks about my son. They even schedule me and tell me that they don’t have a time available that’s next to another appointment that I have elsewhere but that I should come on over at that time anyway and not wait the hours in between to be seen. Or the treatment room staff, who always comment on the Love Jars or my curls. But there are other places that seem to have missed the memo on pleasantries or have simply become too jaded to have any. This saddens me, as they are the face of the office and have the ability to make or break someone’s day. In a case like mine today, it is an urgent matter in which she was refusing to help. There was no acknowledgement or apology but there was also no hold to ask the triage nurse if she can fit me in or a quick look at another doctor’s schedule to see if I could see someone else. Perhaps I expect too much?

A text to my oncologist’s nurse and she was on the phone with the triage nurse from the pulmonary doctor’s office. Within an hour, I was speaking directly with the doctor himself. Though he is out the next few days, he fit me in with his colleague and I will have the fluid removed tomorrow afternoon.

I share these stories because I want to express just how important it is to be kind. We all have challenging days, I completely understand that, and I have absolutely had my fair share of unpleasantries. But on a day like today, I needed kindness. I needed someone – particularly the medical office that I was calling – to tell me that it was going to be ok and that they would ensure I am well taken care of. There shouldn’t be a need for me to call my oncologist’s office and ask them to handle it for me. Yes, I know they will but shouldn’t have been necessary…not when you are simply willing to be kind to others.

In this industry especially, I feel as though a smiling face or a simple how are you should be a baseline for how to treat others. I imagine that these particular individuals don’t want to be treated poorly either.

Be kind, my friends. Spread the love…always.

 

Not quite a million…?

I was a little anxious this morning to pull up my medical history for 2016. I watch the charges that come in regularly, the discounts that are given to insurance companies and what is actually paid. I am curious as to the different charges that each office bills and I want to make sure there aren’t any denials that sneak by me.

Let me first say that I am incredibly blessed to have insurance. Yes, I have an out-of-pocket expense but there is a cap on it each year. My medical insurance coverage is different than my prescription coverage. For some reason my prescription coverage is not available for me to pull today so I’ll do that another day and share it for sure.

All of the charges have not come in for 2016 and all of them have not yet been processed. But as of this morning, my insurance has been billed $896,584.71. This is the retail cost of every charge. If I did not have insurance, this would be the bill (although separate from each provider) that I would be asked to pay.

There was an insurance discount, which was $548,532.79. This is the discount amount contractually agreed upon between my insurance and the in-network providers.

The amount that my insurance company paid, which excludes my out-of-pocket costs, is $261,190.61. My deductible and coinsurance for 2016 was $3250 for medical expenses.

This number astounds me. Again, I am incredibly grateful for having coverage. Even with my out-of-pocket expense, it’s nowhere near what is billed to my insurance company.

Life with cancer is not easy. As I mentioned the other day, every headache, back pain or cough is cause of concern. Scans are frequent, I have regular follow ups with my oncologist and radiation oncologist and then I have another half dozen or so doctors that follow my care. And that doesn’t even include the oncologists at the different cancer centers that I have visited. Thankfully I can communicate with them via call or text for the most part now that we have established relationships. And then there’s the regular visits for wellness exams, physicals and colds.

Then there’s the day-to-day cost of this disease. Outside of prescriptions (which I will cover when the website has the information again), there’s the protocols that I follow, which are supplements that I take 3 times a day based on meetings with an alternative medicine doctor (the visit and the supplements aren’t covered by insurance). That retail cost is somewhere around $1500 every 8 weeks. I have been using Band-Aids, gauze and saline for this radiation burn since August. The radiation oncologist provides most of the gauze and the saline and I buy the Band-Aids to cover the wound. There’s stomach medicine that I take regularly. Sometimes its anti-nausea, sometimes Imodium but mostly Senokot. There’s the lotion that is needed for the areas of my body that have been radiated ($14 for 1.7 oz, mixed with organic Calendula oil which is $10 for 1 oz). Then there’s the lotion that is needed for my feet, especially with taking Xeloda previously ($27 for 4 oz). I use a diffuser filled with different essential oils that run anywhere from $10 to $100 per bottle. I have to use special toothpaste (biotene). In 2015, I bought wigs to help cover and keep my bald head warm. I also previously and more recently purchased bathing suits that can hold my prosthetic. Oh, then there’s the cost of driving around town to and from all of these appointments.

My diet is significantly different now too. I buy organic as much as possible and eat a lot of fruits and vegetables. Juicing and smoothies are wonderful but come at a cost. I feel better physically eating what I eat now and wish I had started it long ago.

Then there’s the travel to different centers. Though we try to make the most out of it by sight-seeing, the reality is that we are traveling in the hopes of finding a doctor or treatment that can help prolong my life. These visits come at a cost, emotionally, physically and financially.

It’s a full-time job in itself.

I am sharing this information because it is simply the reality of cancer. These are just the things that come to mind as I type and I am sure that there are many other costs that I’m not including. Are some of these things that I am doing to help me live a longer, stronger life? Yes. Are some of these things that I am hoping will help me outlive my prognosis? Of course. Are some of these things necessities? Absolutely.

What do people do that cannot afford these costs? Let’s say that the protocols and the organics and the lotions aren’t included and it is simply the cost of treatment…treatment that will hopefully work to save their life. What if they don’t have insurance? What if they can’t pay the cost of care? It scares me. Cancer is not something that any of us ask for or expect – especially at 31. But it’s here and we make the best out of it while we can. But what if that best isn’t an option because you can’t afford care? It terrifies me. I don’t know what people do.

What if people can’t work? I have been blessed with the ability to work throughout the last year and a half of treatments and surgeries. But I won’t lie, it takes its toll. There is continuously a question of whether or not you will work until your life ends…or until you simply can’t manage it anymore. Life is exhausting without cancer. Add in a family, a toddler, a life that you are trying to enjoy and top it off with cancer and you are bound to be in bed with your toddler at 8pm every night. But work is your insurance coverage and your paycheck is your ability to live the life that you want to live while you feel well enough to do just that. Is there really a choice?

I have been extremely blessed with financial gifts that helped to cover most of these expenses. There are so many people who care about us and want to help. For that, I am eternally grateful. I honestly don’t know what we would do without people like you.

This is the reality. I have debated on a post like this for months but thought it was important to share the realities that are breast cancer. And the reality that with metastatic breast cancer, those costs will never disappear. Each year, deductibles go up along with premiums and people like myself know they will reach their out-of-pocket expenses…likely in the first month. It’s not something that I can change and yet it causes a lump in my throat. I am SO GRATEFUL for another year of life and yet I can’t help but fear the restart of my out-of-pocket costs. The costs of cancer care is enough to break even the most financially-fit person. I bet with my prescription coverage and the other expenses that I mentioned, I did actually reach a million dollars this year.

This is metastatic breast cancer. This is Stage 4. This is our reality. But, we keep living. We make do with what we can and we don’t go without. And we choose to live. Despite the costs of treatment, of cancer and of side effects, we continue to enjoy this life that we are so blessed to have. And you all should to…enjoy each and every beautiful moment.

Here’s to 2017…and LIVING.

The last sunset…

A Facebook memory popped up today. This is not unusual, of course, but they typically involve pictures of Jacob. They always make my heart swell, as he continues to grow so much each day. Today’s reminder was different though and it made me pause.

In 2012, Joe & I spent New Year’s Eve at the beach. We enjoyed dinner, a glass of wine and a walk down the beach at sunset. I have always been anxious to be off the roads early on a night like tonight. The picture was of us, smiling broadly, the beach behind us. The very last sunset of 2012 going down in front of our eyes. 

This year, we unintentionally did the same thing. Jacob woke up with a bit of a cold so we changed our plans. We ventured to the beach, enjoyed appetizers at the same restaurant and visited the beach. The sunset in front of us, closing down on 2016.

The amount of things that have changed in 4 short – or long – years is astounding. The restaurant itself went through a massive renovation and was closed for months last year. It was more of a hole-in-the-wall then than now but still just as good. The ocean has remained constant, with its waves crashing loudly, though I can just imagine what has changed beneath the surface. The sunset is equally as gorgeous and glowed brightly against the blue sky as the sun lowered itself down.

Then there is us. My mom joined us this year, which is the first time in over a decade that I’ve spent this night with her. I’ve gained and lost a few pounds over the years and the lines on my face have deepened with age, stress and tears – of laughter and sadness. I’ve been through many hairstyles – straight, long and bald.

We didn’t have the blessing of Jacob back then and little did we know, a year later I’d be proudly holding my belly as we watched the ball drop…struggling to stay awake.

I started a new job since then. Though the same company that I’ve been with, it has been both rewarding and challenging as I learn new things.

We bought a new-used car and our parents (my inlaws) bought a boat to keep us all busy and enjoy the water.

We have traveled to the Caribbean to celebrate my big sisters 30th birthday, visited Georgia countless times to visit my baby sister and her husband, had multiple trips to my hometown for visits with the people we love and trips around Florida to visit friends and local parks.

Life is relatively the same in terms of where we live and yet it is so very different. It’s hard to imagine life before cancer and even harder to remember life before Jacob. Our routines are so different than they were back then and our priorities are very, uniquely different.

We have made more new friends than we can count and though we lost touch with a few, we all found our way back to each other over the last year.

I have rediscovered my faith in God. Though I never lost in entirely, it has strengthened exponentially and I remain steadfast in my faith and love for our Lord.

Though the sunset is similar, the years between are memorable for so many reasons. Our blessings are unique and huge. We are loved by so many and love hard in return.

As this year comes to a close, remember all the moments – big & small – that you are so incredibly blessed with. This year comes to a brilliant end while 2017 lingers, waiting anxiously in the distance.

Happy New Year, everyone. I hope this year is filled with love, laughter and overwhelmingly wonderful memories. Keep spreading the love, my friends. Now & always.

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.