Meghan’s Cross 💚

Over a year ago, a dear friend of mine handed me a gift that her husband picked out for me. It’s a cross that he made himself. I wrote about it at the time because it meant so much to me. It’s no secret that I was finding my faith again after diagnosis and that the last year of my life, it has grown even stronger. I wear the cross they gave me regularly because I love it and because it reminds me that God is by my side every step of the way – and so are my incredible friends.

See, these crosses aren’t something that they found and thought of me…they are hand made, with love – every single one of them. We enjoyed a meal together recently and at the end of it, they surprised us with an incredibly kind and generous gift. 

They wanted to help us through this journey and help with donations for all that lies ahead. So…they made us crosses to share with you. Each one is quite literally made with love by my friends, Toni & Mark. They even picked out some of my favorite verses and sayings and printed up cards to send with each cross. And if that isn’t absolutely amazing enough! They asked me to say a little something over each cross – like the favorite verse – before they mail it out. 

Looking past their unbelievable generosity, the process of making each cross simply amazes me.

First, they take a box of masonary nails. They secure them into a vice and heat them up with a torch to bend them. Next, they pair each bended nail together to make a cross.

Once paired, they use gold to weld the nails together – creating a bond between the nails and the gold that is unbreakable. Isn’t the afterglow of the brazing amazing?!  I love that these are brought to the fire in one form and made stronger at the end – with a new purpose. Just like the phoenix.

Next, a hole is drilled in the cross and a jump ring is placed for it to be hung.

Now it’s ready to be wrapped with wire around the gold and leather is used to hang the cross. The end product? 

Meghan’s Cross

When Toni & Mark shared with me that they wanted to make these amazing crosses to be sold for donations, I was immediately brought to tears. But then I saw Joe’s reaction and my heart swelled even more.

“I can’t wait for one!” He exclaimed excitedly. I smiled, “but you don’t wear necklaces?” I asked. He looked at me, eyes wide and animated, “but I can hang it from my desk or rear view mirror and always have Meghan’s Cross nearby.” ❤

If you are interested in one of these gorgeous crosses, head over to the Give page or you can mail a check. The crosses are only $15 each! That includes shipping and a few words of love said by Meghan (me!😉) over each one before it’s sent on its way. 💚

If you are local and would love one, let me know and we can arrange a pickup!

I am incredibly excited about these wonderful creations and I cannot wait to share my love for these crosses with you!

Spread the love, my friends!!

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.

Make no mistake – I am dying. 

Those words are not easy to type and I do not use them lightly. But the reality is that I am dying. I have been given a prognosis that is the national average for my survivability based on my diagnosis. I have not shared that broadly because I honesty cannot wrap my head around it and because I hope & I pray & I visit all of these places so that I can try to outlive the time that I have been given. But at the end of the day, my disease is terminal. It is probable – and likely – that I will not see my son attend his first day of kindergarten.

The other day someone mentioned that they are considering stopping treatment. This person is Stage 4, undergoing maintenance treatment that will never stop and that thankfully has been working for about 2 years. But she struggles with the anger behind this diagnosis and the frustration that she has been dealt a bad hand. My heart hurts for her. I actually have a difficult time wrapping my head around that because I don’t have the option of maintenance treatment. And I can’t fathom giving up.

Despite this prognosis, I am striving for normalcy. I work hard, I bring my son to school everyday, I visit with friends & family, I juggle the standard treatments & side effects along with the sudden or urgent needs and through all of this, I make plans for the future. Will I be here to see these plans through? No one knows. But that doesn’t mean that I’m not going to make those plans and get excited for what’s to come.

It helps me to share my story openly and to be honest about my feelings. It helps me to find the joy along the way and to add a small bit of humor to an otherwise unpleasant story. It helps me to just be me. Maybe this sentiment is selfish of me.

If I were to look at the facts alone, they are grim, scary, concerning and well, actually quite terrifying. I continously have progression while simultaneously having stability in other areas. I have side effects from treatment, prescriptions and cancer itself. I struggle with udder exhaustion, to the point that I literally force my eyes to stay open while trying not to let anxiety or fear take over when it is always knocking on my door.

And it never ends. Any of it. I will, quite literally, take some sort of treatment until the day that I leave this earth. 

So this is my reality. This is just a teeny-tiny snippet of what it means to have a terminal diagnosis. I could very easily wrap myself up in a blanket, lay down in the fetal position, close my eyes and give up. But that’s NOT ME.

I want to live. Yes, I have bad days like yesterday where I cry most of the night. But then I pick myself up, wipe away the tears and move on. Because I am here. I am blessed with the gift of today and I don’t want to waste it. I want my son to remember his momma full of love and life. I don’t want him to remember me sick.

I’m sorry if this post upsets anyone and I’m sorry if it’s hard to hear. But this is my life.

I will continue to choose life and love and joy. I will not give in or give up or lay down – to this disease, to any side effects or to anyone who may think that I’m not actually sick. 

I love you all. Continue to spread love and don’t ever let anyone steal your joy. 

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.

 

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.

What’s missing…

Today while getting ready I did not have to take an extra 20ish minutes of mine and my husband’s time. No covering in silvadene, xeroform, bandages and netting. Just a few minutes of cleaning the one wound with saline, applying the Santyl and covering with a saline soaked gauze and a bandage. Sounds like a lot but I don’t think the entire process took 5 minutes  – much less than before!

I’ll have to change the saline in about 3 – 4 hours but it’s a much easier process. I won’t pretend it doesn’t hurt because it’s pretty painful. I would compare it to taking a shower when my chest was all open wounds. It feels like that on the open wound. Hopefully this causes it to heal quickly! 

Happy Wednesday, friends! Try to find a way to spread some love today. 💚

Oh, October…

So it’s October…also known as “Pinktober” and a few not-so-nice names that I have recently learned.

Last year, I saw the light at the end of the tunnel and was excited to participate in the different campaigns then and even more so in the future. I made Love Jars for the treatment center, wore pink regularly and participated in the Making Strides Against Breast Cancer Walk. I also participated in a local event with a country radio station and shared my story at the event. It was a lot despite treatment but I wouldn’t change a thing.

I remember going to the Making Strides Walk with my green wig and walking into the Survivor’s Tent. They stopped me and asked if I was, in fact, a Survivor. I smiled and said that I would be once treatment is over but I am surviving right now. They congratulated me and let me in. We wheeled Jacob around, collected our snacks, water & literature and headed out to begin the walk. I remember the heat of the day as the sun rose. I remember removing my wig and feeling the cool air on my very bald head. I remember laughing with my son’s daycare, who graciously supported me that day – t-shirts and all!   I remember our family and friends, I remember Jacob and his BFF from the womb strolling around and taking in the sights around them. I remember the cheers, the colors and the endless bottles of water that volunteers passed out. Above all else, I remember the overall feeling of love and support. I remember the smiles. I remember the tears and overwhelming feeling of determination. I remember the signs for people who have passed, people who have just been diagnosed, people fighting now and people who will never stop fighting.

This year, there is not a light at the end of the tunnel but there is a very bright tunnel that will never end. I have metastatic breast cancer. I have breast cancer that has spread past my breast, to most of my lymphatic system, my skin, my bones and my brain. Yes, I am undergoing treatment and it IS working! I will never stop treatment. I will always hold out hope that this treatment will continue to work. But when it doesn’t, I will hold out hope that the next one will. I feel side effects that don’t go away like they used to. My feet hurt often and my skin is taking a long time to heal from radiation. My taste buds have changed along with my diet. I am not as hungry as I once was but I view food as fuel for my body versus a requirement to simply satisfy my hunger before. I required a blood transfusion to increase my counts and yet I am still tired. Tired, all the time. I am only 32.

I am required to ask questions and make decisions that literally affect my life and the length of it. I see multiple doctor’s regularly and seek 2nd opinions on top of that. I make phone calls and follow ups daily to try and stay on top of everything that is happening. It’s a full time job in itself. I have a life to live and decisions to make. I have to plan for a future that is unknown to me. A future that I may or may not be here to see. I do this all with a smile because that is who I am.

I don’t share this because I want sympathy or sadness. I share this because this is metastatic breast cancer. This is stage 4, a terminal disease. I am not giving up. Frankly, I don’t know that I ever can. But I get it. I get the daily struggle. I get the tears; the frustration at yourself and the world. I understand.

But I also understand that every moment that I am granted is a blessing. Each day that I open my eyes is a gift from God. I am blessed with the ability to continue to work and care for my family. I am blessed to be here and to be able to continue fighting. I am blessed that I can rest when I need to and that I have so many loved ones around me that truly care about the well-being of me and my family.

This October, you will be bombarded by pink – there is no doubt about that. I am fairly certain that everything in existence forms a pink counterpart in some way. J I ask that you take a second look before spending your hard earned money. Make sure that what you are purchasing is actually contributing to breast cancer research. Make sure there is not a limit to the funds that the company will donate (Ex. Will donate up to $100, despite how many we sell). Make sure that the company isn’t just selling pink for the sake of selling pink.

If you want to donate to Stage 4 research specifically, there is an organization called METavivor.org that literally spends 100% of donations on research for this disease. There are also local organizations that contribute funds and assistance to local families who are dealing with this terrible disease. You can google your own local places or I would be happy to share some of ours.

October is a big month for breast cancer awareness and I am grateful that we continue to spread the awareness of this disease. However 30% of early stage breast cancers, like mine, turn into a Stage 4 metastatic diagnosis. We don’t just need awareness…we need research. We need a cure.

I will continue to give back. I will continue to make Love Jars, though I have taken a break since July. I will continue to share my journey in the hopes of teaching or inspiring others. And above all else, I will continue to rally with my community. Through volunteering, walks or simply sharing my story, I will join forces with the people around me in the hopes of helping even just one person. The amazing people that I have met “randomly” over the last year are some of the very best friends that I could ever ask for. They have changed my life for the better.

Spread the love, my friends. Enjoy this day and all of the days ahead of you.

How I’m feeling…

Happy Sunday, friends! Did anyone else see that gorgeous full moon last night?! My goodness, I thought I could reach out and touch it – it was incredible. We were driving home when it was rising and Jacob was in awe. The whole car ride he was watching for it behind the trees and buildings, asking “where moon go?” when it disappeared and yelling “there it is!” everytime he saw it. He even woke up talking about it this morning! 

I’m just over a week out of radiation treatment and I’m hopeful that I’ll start to feel better now. Dare I say, I feel as though the pain is improving slightly, though looking at pictures there are parts that are more red than before. I don’t think I curse quite as much when I’m getting bandaged up though, so that’s good news! 😉 I’m anxious to stop with the bandages since they are time consuming, uncomfortable and warm…but almost through it!

When was the last time you bathed instead of showering? I can’t remember the last time I did! The last few days, I’ve started bathing to help with the radiation burn. It’s not the greatest thing in the world but it is significantly better than showering. It must be the combination of the water falling vs me being able to take my time getting the extra lotion off my skin with a washcloth. I am glad to have found a happy medium!

I’m over a week into my 3rd cycle of Xeloda and so far, I feel good from that. My feet are lotioned up regularly and it’s causing some major dry skin in general but other than that, I only have fatigue so that’s great news. I’m hoping my feet don’t start to hurt until the end of this cycle, when it’s time to take a break again anyway. The combination of everything right now is causing me to make up for lost sleep, for sure. I feel as though I spend my days sleeping but I remind myself this is the time that my body needs it. I’m almost recovered from radiation and then hopefully it’ll just be chemo for a LONG time!

Our visit to Memorial Sloan Kettering is this week and I am super excited about it! After the last 2 visits, I think we have a better handle on what questions we have and need to understand, as well as a better handle on how I’m responding to treatment. I’m anxious – in a good way – for that visit…and for some cooler weather! 😉

This is going to be a great week, friends. I feel it in my heart. Spread the love and enjoy this beautiful day that we have all been gifted with!! 💚