Cocktails & Chemo

Back in April, I attended the CHHO event to bring Love Jars to the ladies who were part of the outreach that month. During the event, I met a wonderful woman named Amanda. She runs Cocktails & Chemo. Her story began as a blog about her husband Joe’s battle with cancer and has turned into this incredible foundation that helps caregivers. 

After my recent diagnosis, I reached out to Amanda and nominated my husband for her caregiver award. He is regularly selfless and I think he has the hardest job of all. Amanda surprised Joe with an incredible gift package filled with all sorts of outside related goodies, gift cards and a sweet card. We all know how much Joe loves the outdoors!

I can’t thank Cocktails & Chemo and Amanda enough for their generosity and support. The sweet surprise brought such a smile to Joe’s face and I know it will stay.

Thank you Amanda!!! #JoeStrong πŸ’š

Rise & shine!

Happy Monday, friends! This week is packed with work, life and appointments for our family of three. I am sure you can relate! I’ve been up since 4am (dang steroid), but lunches are packed up with all fresh, organic fruits and veggies to keep the “hangry” at bay. πŸ˜‰

We are embracing this day and all that it brings. I am so grateful for:

1. The incredible outpouring of love and support that we have received. From the calls, texts, letters, packages, prayers and love…I know I’m not including everything but know how much every word means the world to us!

2. The blessing of life itself. Each day is a gift and I am so grateful for what each day brings. Regardless of the fight that we have in front of us, we will continue to battle and pray with all that we have inside of us.

3. My family. I know this is not easy on Jacob and Joe. I actually can’t imagine what goes through each of their heads. Though Jacob may not know the ins and outs of what is happening, he knows that something is up. And yet each of them support me and love me unconditionally. They don’t question that love and they continue to embrace me, my struggles and every day that we have together. To say that I am a blessed and lucky woman would be an understatement. I am so loved.

Spread the love, my friends. Today and always!

August 5th

This day will forever remain in my heart. It is the day my son turned a month old. It is the day he celebrated 13 months. And it was the day I received my cancer diagnosis.

I remember my husband, 13 month old and I sitting outside daycare at 620am. They opened at 630am and we had never arrived that early. Our appointment was downtown at 7am and I was clearly anxious. We dropped him off, the summer warmth hot on our skin as the sun rose in the sky. We traveled in silence to the breast care surgeon. Checking in with smiles, we waited for the doctor. I joked with my husband that we didn’t want to hear words like “invasive”, “cancer”, “carcinoma” or “metastatic”. Little did I know, our world was about to change forever.

As we sat in appointment after appointment, receiving instructions, blood work, results and more scans, the tears came and went. At some point the numbness settled in and I sat in awe of the future. Unsure, scared and yet determined. Losing was not an option.

This last year has brought heartache, tears and pain. But it has also brought more happiness than I could have ever dreamed. The person that I was a year ago is no longer here. She is stronger than she ever thought possible. She is determined. And she is willing to give this gift of life all that she has within her.

I slept last night. Almost an entire, uninterrupted night of sleep. I awoke with a smile and little man has been singing all morning. My husband read to him while I dressed for work. All is right in the world.

The tears come today but not because of the last year of changes in my life and not because of the unknown future. The tears come today because I am blessed with this beautiful gift. This day, my family, my friends, this life. Today truly is a blessing for each of us.

So on this 5th of August, reflect not on the past. Rejoice in the changes that you have made in the life that you want to live. Enjoy this day and every day, always.

Spread the love, my friends! πŸ’‹ πŸ’šπŸ’—

Hello, world!

Here I am! Life has been crazy, as always. I’m making progress with appointments and the month of August is set to be a crazy one! I’ll enjoy this weekend for what it is before hitting the ground running next week.

I visit Moffitt Cancer Center in Tampa on the 11th, Dana Farber in Boston on the 12th, Emory in Atlanta on the 19th, Mayo Clinic in Jacksonville the 25th and Sloan Kettering on the 1st of September. It’s a LOT of travel and the logistics themselves are exhausting when mixed with radiation but we will get through it for sure!

Long story short, I have not yet begun radiation to my chest. There have been a lot of tears and frustrations but at the end of the day, it is what it is. I am awaiting “approval” to begin. It sucks that I’ve been spinning my wheels for over a week but I trust that there is a reason and a method to this madness. The pills and radiation are supposed to have intense effects together so I will take it as a blessing in disguise and focus my time and energy on things that I can control.

The steroids have been keeping me up at night so I’m not sleeping as well as I know I should, despite being tired. Waiting to confirm that melatonin is safe to take with my pills, in the hopes of trying a natural remedy.

The pills themselves have been relatively uneventful in terms of side effects, so that’s exciting! I am a week in today so I am remaining optimistic that they are hard at work inside of me, fighting this awful disease. 

I continue to be amazed at the incredible outpouring of love and support that my family receives. We are blessed beyond measure and grateful for each and every person that crosses our path. Whether you know it or not, we thank God for you each day.

That’s all for now. Back to the grind and spreading the love, my friends! πŸ’‹πŸ’‹πŸ’‹

Spreading the love…

Imagine yourself walking down the beach and finding a decorative stone or two. You look at it and smile – the sentiment bringing warmth to your heart. “Believe”, “Wish”, “Love”. You keep walking but leave the stone behind. A few feet further and you find another. The color catches your eye this time and you can’t help but pick it up. Perhaps it’s the Red Phoenix (πŸ˜‰). Perhaps it’s a heart. Maybe a beautiful word of “Hope”. Whatever image is there, you hold that stone and stare deeply at it. You feel the love that went into each stroke and the tears begin the fall. Walking away, you take the stone with you…feeling it’s presence, the love that it filled you with. It is exactly what you were looking for that morning. It was exactly what you needed to find.

My aunt and her family have started creating these amazing stones. She walks regularly in a beach up north and finds beach stones along the way. Her family collects them and brings them home to paint and leave behind at their next visit. She even recently started making small chemo bags out of burlap sacks and painting rocks to match tick-tack-toe boards to give away.

Such an incredible gesture of selflessness, kindness and pure LOVE. I wanted to share this moment with you all. It brought me to tears and I love seeing the pictures of her and her family creations. They wrap themselves up in the love that they find each and every single day. I don’t think I could be more proud. Team Red Phoenix! πŸ’š

Day 2, dose 1

I set my alarm this morning to prepare for day 2 of chemo pills. I don’t typically eat breakfast upon waking up so this is a new routine for me. Food almost immediately, followed by 30 minutes before I take this morning’s dose. A reminder helps tell me to stop what I’m doing and eat before taking my pills.  Little man had a rough night for some reason and I awoke with a decent headache but I can’t complain. It’s hard to believe that just a week ago, I was preparing for brain surgery. I am so incredibly blessed with my abilities to heal. Yes, there is a long road ahead but I am so thankful for today.

I have received a lot of requests about how to help during this time. I don’t do well with these questions and I shy away from the answer mostly. To be candid, any and all help is appreciated more than I could ever express. Your words of encouragement, concern and prayer do not fall on deaf ears. They are felt and heard all the way across the world. I feel your LOVE.

My friend Seema set up a booster campaign, if you are interested in t-shirts – https://www.booster.com/teamredphoenix?share=7131469753615390&utm_source=facebook&utm_campaign=mobile-campaign-page-share&utm_medium=social&ref=facebook_social_mobile-campaign-page-share&utm_content=teamredphoenix&type=1&side=front

And lifelong family friends have also set up a fundraising event – on Facebook as πŸ’š Rallying for Red Phoenix πŸ’š – that includes wrist bands!

My sister, Sarah, who you can also find on the I am Red Phoenix Facebook page is organizing other ways to help and is simply a click away from any questions that you may have for me.

As I type this, I can’t help but cry. This disease will not define me or my family but it is absolutely a part of who I am and my journey in life. It takes an entire village and I feel the Team Red Phoenix army forming around me. I have such love and admiration for each and every single one of you.

As for me, I am going to take my 2nd morning dose and enjoy this beautiful day that God has gifted each one of us. Spread the love, my friends. Always.

πŸ’šπŸ’—πŸ’šπŸ’—πŸ’šπŸ’—

3LB4L – Wishes

Earlier this year, I reached out to an organization called 3 Little Birdies for Life. They grant wishes for cancer patients like me. A few days prior to my most recent diagnosis of Stage 4, I received an incredible gift of a new camera from them. It is unlike anything that I have ever seen before and frankly, I don’t feel deserving of it! Thankfully, they even set me up with lessons – personal and group! It’ll be some time before I get moving on the lessons with everything happening but in the meantime, I thought that I would start with the basics…also known as β€œauto feature”. πŸ˜‰

The day after my diagnosis, we took a local train ride with Jacob’s friend from the womb – and our dear family friends. It was a hot day filled with fun adventure as the boys – just a week apart! – rode on a real vintage coach, pulled by a 1907 steam locomotive. It was so cool! The boys would not stop yelling about the β€œchoo-choo”, listened attentively to the noises it made and loved watching the lake go by in the open windows around them. We took an early train (thanks, Groupon!) and the boys had the entire train car to themselves – with us parents, of course. The day was so much fun and their tiny faces were completely precious the entire time. Definitely something we will go back and do again in cooler weather!

I decided that particular Saturday was as good a day as any to practice on my new camera so I took a few shots. Nothing crazy and the pictures don’t quite do the day and train ride justice but it was so much fun!! Enjoy!

Day 1, dose 1!

My inability to sleep last night had me up just after 4am, my mind racing with things that I could do. After trying to force myself back to sleep, I decided to tackle my list and spent the next few hours accomplishing many of the activities for the day. Mostly computer work, I zoned out in the living room to try and get a little ahead of the paperwork, appointments and shuffle of this diagnosis. 

A little after 7am, I ventured back into the bedroom. The sun was just over the horizon, streaming in through the bright half circle window above our bedroom window. My sweet husband and our little man were snuggled together, inseparable in the morning light. I stood over them for a while; careful not to wake them and yet so conscious of that very moment in time. I know it is fleeting but it is mine. They will never be that old or that young again. They will never be quite so innocent and yet completely niave. I will hold the moment – and them – dear, always.

This morning I took my first dose of Xeloda after a breakfast of fresh fruits. I’m washing it down with a fresh juice, courtesy of last night’s meal prep assistance. I don’t know what the effects will be but I am optimistic and feel that this medicine will help kick my cancer to the side for now. That is my prayer today.

Much love, friends. Enjoy every moment and spread the love, always.

Juice time!!!

I am a blessed woman for sure. Tonight, Seema showed up (the amazing chick who created the Red Phoenix logo, little man’s mural and also happens to be my dear, sweet friend). All of my incredible work people rallied together and hooked me up with all of these awesome fruits, veggies and goodies!!! How fabulous is that?!

She lent me her juicer and helped show me and the hubby how to make fresh juice! Such a fun way to spend the evening and meal prep. Love all my work people SO MUCH!!!

Some updates and a question, please…

My chemo pills are set to arrive today by mail. I will take 4 pills, twice per day with breakfast and dinner. I am debating on beginning tomorrow and starting the day with them, rather than half a day today. I will do 2 weeks on and 1 week off indefinitely. Not sure of the effects for me just yet but time will tell and I am optimistic! 

The radiation machine is down so I have not yet begun. I will call today to check on the status. As of now, the plan is to hit my lymph nodes (center chest, right axillary, neck and clavicle) with radiation for about 4 weeks. We will reassess as needed. If the pills are not working systemically against my disease, then we will also redirect to hit my chest skin as needed. I’ll see her weekly so I am confident that she has it under control.

I will see the neurosurgeon in about a week to have my stitches removed and to discuss radiation directed at my head, where my surgery was. More to come, but for now I continue to heal. They are doing a biopsy on what was removed and I am awaiting the results. I will have repeat head CT and PET in about a month. I will continue those regularly forever to track possible progression. I am unable to have an MRI due to tissue expanders. More to come on that in the future.

I am currently being treated where I have been, however I am in the process of obtaining appointments elsewhere as well. MD Anderson in TX won’t see me unless my current regimen is not working. I will take this as a good thing! Hopefully they won’t be needed. πŸ˜‰  I have tentative appointments in August with Moffitt, Sloan Kettering and Emory. I also have calls out to Johns Hopkins, Mayo and Dana Farber. What I anticipate, is that each center will likely tell me to continue my current course of treatment and to contact them if needed. I also suspect that they will discuss any potential clinical trials for me. I am hopeful!

I am personally beginning a regimen of detoxification for my body. I have been focused on non-GMO, no preservatives in the past but I am stepping that up a bit. I will be eating a diet of primarily fruits and veggies. I will also seek out a nutritionist to ensure I cover all vitamins and minerals. I am determined! My family is forever a top priority and while they will assist and support me in full, I expect them to eat as organic and natural as they have been. πŸ’š

From this point forward, I will never be cured. What I will be – with God’s good grace – is NED or No Evidence of Disease. We will hopefully get a handle on this disease and allow me to live my life while it lays dormant. Yes, this is scary. Terrifying, really. But I am determined to LIVE. I am determined to enjoy all that my family and friends have to offer. I am determined to love HARD, snuggle like crazy and laugh until my belly and cheeks hurt.

That being said, if anyone knows of any organizations that help people like myself, I’d love to hear of them. I want to set myself and my family up for success as best as possible. Wherever you are in the world, if you happen to know of a local or large organization that helps people like me, feel free to share! I will absolutely look into each and every single one. We will have a lot of travel upcoming and I don’t know what the future holds in terms of work and employment so I am grateful for all of the organizations that are available to us.

Much love, my friends. Stay strong and keep spreading the LOVE!!!