Bring on the side effects!

About ten years ago, I started a new medication for chronic migraines. Soon after starting it, I woke up in the middle of the night with a horrible pain in my chest. It was a mix of burning and sharp pain that radiated into my back. It wouldn’t go away and I had never felt anything like it before so I went to the emergency room. They told me that I had a pinched nerve and sent me home with some pain medicine. The pain medicine did nothing to help so I went to my primary care doctor. It was heartburn. What?

I felt horrible. How in the world could heartburn possibly hurt that bad?! Turns out it was a side effect of my new medication. I switched off of it immediately.

Aside from that time, I’ve never really experienced heartburn. Even during pregnancy, heartburn was a rarity and wasn’t too bad. The doctors told me that it was a possibility that I would have heartburn as a side effect of the chemo but I didn’t expect that it would be horrible. I was wrong. My goodness, I was wrong. It feels like there aren’t enough antacids in the world to combat it.

While on the topic of side effects….fatigue is definitely another one. Yesterday we took a family walk to the mailbox, which is only a block away, and I was ready for a nap when we returned. Everything seems tiring right now. Thankfully, there’s coffee. Which, by the way, tastes like metal. Why? Because everything tastes like metal right now. Especially water. Do you remember when you were a kid and would lick a 9V battery and get electrocuted? (Please don’t try it now!) And your mouth tasted metallic afterwards? That. All the time.

Some of the slightly less annoying side effects are stomach cramps (ouch!), headaches (nothing too crazy), dry mouth (and unquenchable thirst), chapped lips (fun), hot flashes (seriously?!), dry skin (think New York winter) and (the inevitable) hair loss.

The doctor said it would take a week or two for the hair loss…the shower tested that very theory today. Does anyone know where I can find some super cute hats and head scarfs?!? I want to remain fashionable. (ha!)

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The Love Jar

Today was better than yesterday. Not great but better. And for that, I am grateful.

My big sister visited this weekend. She helped around the house, caught us up on our laundry, helped me organize my life and snuggled my little man. All of these things were so wonderful. I can’t thank her enough for all of her help and support this weekend.

You know what’s even more wonderful than all of those things?

Sister snuggles. There is nothing quite as amazing as sister snuggles. There is something about a warm hug and a belly laugh with a sister that wipes away all the bad in the world. That, in itself, helps the healing process.

My sister, with the help of incredible friends and family, created a “Love Jar” for me. It is filled with memories of fun and laughter, inspirational words and love – stories, quotes and thoughts put together just for me. I have only read a few so far – and they brought tears for many reasons.

There is something magical about it. Reading each piece of paper gives me strength. It’s easy to get caught up in the everyday right now, especially with the whirlwind that has been the last month. The Love Jar reminds me of the greatness that is life – and the way it impacts everyone differently. It is inspiring and humbling all at once.

That.

My 21st birthday was the first birthday I celebrated in Florida. I was so excited to go out in April without worrying about the cold – and I was spending the evening at Universal City Walk! What better way to celebrate?! Well, with a hurricane, of course. A lot of them, apparently. So many that the bartender actually gave us hurricane glasses as souvenirs. It was a night filled with fun, dancing and sweet memories. It was awesome.

The next day? Not so awesome. I woke up slightly intoxicated and beginning to feel the side effects of the night before – not the best place to be on your birthday. Dry mouth, upset stomach, heartburn and headache – you name it. Water and food was a necessity but nothing seemed appealing. All I wanted to do all day long was lay in bed and sleep but there is only so much of that that you can handle in one day too. That was a long day.

That. That is what today felt like. Except that I didn’t have the fun, memorable drinks last night to look back on and smile. My body aches but it is fighting off this disease. I’m thirsty but cannot quench my thirst despite the gallons of water I drink. I’ve never really experienced heartburn before but the thought of food brings it on. I may live on grilled cheese for the next few days.

Don’t get me wrong, I’m not complaining. It is worth it – it will all be worth it. My tumor hurts, which I take as a good sign because it is under attack. I know it won’t be rainbows and butterflies while going through this but you know what helps? Knowing that at the end of this, I will be cured.

A picture is worth a thousand words…

A few years ago, well I think it was at least 5 years ago, if not longer, but the exact timing is lost on me, my grandma (my Dad’s mom) gave me a scarf. It wasn’t my birthday or a holiday. It was just a gift. She said she saw it and thought it was perfect for me. I thought it slightly odd at the time because of the design on the scarf, but kept it with the rest of my scarves ever since. I wore it once or twice a year to show support and it always made me feel a little closer to her.

My fabulously artistic friend, Seema – who created the symbol that defines Red Phoenix, is also a talented photographer (amazing, isn’t she?!). I was lucky enough to have her take maternity photos and even monthly photos of my little man to show his growth over the first year of his life. When she approached me about taking pictures before beginning treatment, I was on the fence. I wasn’t sure if it would be harder to take pictures than not. Did I really want to see the “me” before beginning treatment? Would I want to look at them again? What do they really represent?

I decided to do it – if for nothing more than to draw closure on the person that I was before treatment. Before this battle. Before beating cancer.

My big sister bought a dress for her honeymoon almost a decade ago. It was perfectly themed for her Hawaii vacation and she looked amazing in it. So amazing, that the other 3 sisters began “borrowing” it regularly ever since. We joke that it is the “sisterhood of the traveling dress” because it is regularly passed between New York, Georgia and Florida. The dress happened to be in my closet this past weekend and it seemed like the perfect choice for these pictures.

Taking the pictures was fun. We decided to return to where Seema took our maternity photos, which also happens to be my happy place – the beach. The sun was just about to set and little man wanted to jump in the water and splash around, which he did despite being clothed. We wore green since it was Saturday and that’s what we do on Saturdays now. Little man was dressed in his TMNT outfit – our little superhero.

The night was breathtakingly beautiful and the weather was perfect despite it being the middle of summer in Florida. Seema snapped away and kept us laughing the whole time, which helped to keep the tone of the evening light and fun.

The picture taking wasn’t as emotional as I had anticipated. There weren’t any tears and it seemed like a nice walk on the beach with a great friend (plus the addition of a camera).

Until I saw the pictures. I cried. A lot. She captured everything that I am feeling, as a person and as a family, in these pictures. It’s as if she could reach in and expose my inner self through her lens.

I’ve shared some of the pictures in this post. Simply because I think the images that Seema was able to capture speak volumes. Enjoy!

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The Symbol

My dear friend Seema is the most talented artist that I have the pleasure of knowing. When I was pregnant, she painted little man’s nursery. When I explained that his room was beach themed and we wanted to feel like we were there, especially during the middle of the night feedings, she ran with it. I still feel as though I could stare at it for hours. Even little man walks up to it and reaches out like he is really there.

I knew she would be the perfect person to create a symbol for me. Something that speaks to the journey that is Red Phoenix and captures the strength, bravery and perseverance that encompasses this very battle. She had a vision in her head and, in typical Seema fashion, she knocked it out of the park. The Red Phoenix logo defines not only the journey that I am on now but the journey that will be the rest of my life. It symbolizes longevity, fearlessness and indomitable spirit – all things I hope to possess someday.

I hope you all love this amazing symbol created for Red Phoenix.

Seema, you are truly incredible!

Day 1 – DONE!

Today was a long day. We arrived at 745am after dropping little man off with Grandma, who was bringing him to daycare for us. After checking in and filling out a little paperwork, we were showed to our section. Since we were the first to arrive for that particular nursing station, we were able to sit in the corner chair that had a little more room than some of the other chairs. It also had moveable doors that closed almost completely so that we didn’t feel like everyone was staring at us (and us at them!).

The nurse provided a pillow and blanket and my chair reclined nicely. It even had a massaging and warming feature. There was a moveable HD tv as well. My husband had a regular chair to sit in as well. We brought a few things to keep us busy and some snacks and water. It may have looked like we were moving in permanently with all our stuff!

My nurse was super sweet and went over the expectations with us again and did my blood work to check my platelets, white blood cells, etc. The lab was onsite so the results came through within a few minutes. The hardest part of the day was having the needle inserted into the port, since the area is still so swollen and tender. Thankfully it was quick and they gave me a prescription to numb the area before arriving tomorrow.

Before starting the treatments, I was given a steroid, anti-nausea medicine and Benadryl. This took a bit of time so we didn’t begin the actual chemotherapy drugs until around 11am. Each drug took at least an hour and one of them required a 30 minute break in-between. The Benadryl and anti-nausea medicine made me super drowsy so I took a nice long nap for the first two chemotherapy treatments.

The medicine didn’t hurt going in and it was relatively easy to move around when I needed to potty, despite being hooked up. I was able to do a little shopping for cool hats and scope out new book potentials while my husband kept me company. All in all, I’d say today went well.

I am still quite tired and there is a lengthy list of medicines over the next few days that will help keep me comfortable but for now I feel ok, pretty good, considering. I’m sure that will change over the next few days but I’m relieved day 1 is DONE! And for that, I am grateful.

I am blessed

As I pack my bag in preparation for tomorrow and kiss my sweet little man good night, I feel blessed. For so many reasons.  In ways that I cannot begin to comprehend or adequately express.

I have found the love of my life and am lucky enough to call him my husband.

I have the gift of a son, who keeps me on my toes and never ceases to amaze me with his love and sense of wonder.

I have a MASSIVE team of family and friends cheering me on and rallying for me to beat this.

I am surrounded by love and support everywhere I turn.

I have the ability to obtain treatment by an incredible team of people, who I trust have my best interest – and my life – in mind.

I have the beach in my (almost) backyard, where I can go and wash away all the cares of the world just by watching the waves and hearing the ocean.

I know I will beat this.

Because I am blessed.