Making Strides…

Some breast cancer fighters don’t like walks. And that’s ok. Last year when I did the Making Strides walk, I was still fighting this disease and anxious to be cured. This year, I debated on going. I wasn’t sure if I should because they celebrate survivors and I’m not sure how I feel about that. And I debated because I tire easily and it’s a long walk on my feet.

As I thought about it more, I remembered how much I enjoyed the company of fellow fighters, survivors and those who support us because they love us. I remember the tears that I fought back at being surrounded by thousands of people that are there in support of a cure.  And those memories of the people who stood by my side. That’s why I went. To feel pride that I fight to survive every day. And that people near and far support me – in so many ways.

It was an early morning that resulted in us forgetting to bring a stroller. That’s right, we are totally the family with a toddler that forgot a stroller for a 5k. Oops! Thankfully were able to share with Jacob’s BFF from the womb. They both wanted to walk most of the way anyway, so it worked out well! Plus they love copying each other. 😉

It was a wonderful day filled with love and support. Friends traveled to walk by our side and we had the chance to hug friends that we didn’t expect to see. I am so incredibly glad that we went and walked. Though my feet need a serious rest, it was absolutely worth the laughter, fun and memories that were made today.

Remembering Mike

mike-102816I started this post by talking about moving to Florida. I wrote about how Mike was my very first friend in Florida (aside from Joe, of course!), how he would come to keep me company when Joe worked, that he introduced us to all of his friends, how he taught me how to drive a stick shift and he is the reason why the three of us found our first house to rent.

Truth is, it’s hard to write about him. He would be 32 today – my age now. He would be an amazing uncle and Jacob would ask to see him constantly. He would be over for dinner regularly and filling up our weekends with impromptu beach trips (oh, how rough that would be!). We would have petty arguments over whether or not he drove on the grass and we would later laugh about the silly things that we fought about. Mike would be one of my biggest supporters in this journey and would be by our side every step of the way.

Lately, I’ve been thinking about how we all remember things differently. Something that I recall, clear as day, would be a reminder to someone else that the event even occurred. Or someone may have a distinct memory of me and I don’t recall that event and yet I love to hear the memory. We all have different perspectives and the fun is in sharing those perspectives and memories. That is something that I have been struggling with…ensuring that I share everything that I possibly can with those that I love. Big or small, it’s so important to share the memories that we have with each other. Passing on the traditions, reminiscing about the experiences and sharing your recollection allows each and every one of us to live on. Through those memories, each of us is allowed to live again even if we have passed.

One very late night when I first moved to Florida, Joe & I were playing cards at the kitchen table with Mike. He and I were having a very deep conversation about religion and God. I was passionately expressing my faith and he was trying to understand how and why there was purpose that was driven by God.

“Red, I don’t understand how something small and insignificant that I do has a bigger purpose. How is that driven by God’s will?”

“That’s just the point. Yes, you have free will – as we all do. But even the small things that you do impact those around you. They matter because whether you see the outcome or not, you are touching lives.”

He looked at me, put down the cards, stood up from the table and looked me in the eye.

“That’s it. That’s what I needed to hear. Thank you, Red.” And he went to bed.

I’ll never forget that night. It was just the three of us. And yet the intensity and simplicity of the night and the conversation is not lost on me. It’s a memory that deserves to be shared broadly…and an opportunity for Mike to continue living on through each of us.

In memory of Michael. We love you, always.

10.28.84 – 6.11.05

A leap of faith

I didn’t nap today. I wanted to. I’m tired. But I couldn’t. Instead I cried. A lot. It’s been a while since I’ve cried and it must have been building up within my system because I couldn’t control it or contain it. The tears fell and they kept on falling. Even through my words, I couldn’t hold the tears back. I cried for a while, actually. Sometimes it seems like there are a lot of bad things happening all at once and it’s hard to see the light through it all. I think that’s part of what made me cry so hard. It was like one frustrating thing after another happened and I couldn’t see the point or the purpose in any of it.

Then the tears stopped. And I could see just a little more clearly. Yes, my eyes were red and puffy and I needed a few tissues. But it occurred to me that perhaps all that negativity is, quite literally, the point. What if all of those bad things are happening because of a change that needs to occur?

The details don’t matter but some of these bad things have been happening repeatedly. I keep trying to assume innocence and give the benefit of the doubt. Maybe I’m avoiding conflict but I like to think that I’m the type of person lately that assumes there is a good or valid reason behind certain actions. But there comes a point when we have to say enough is enough.

So…change. I’ve decided it’s needed. I’m not entirely sure what that looks like just yet and honestly, the options are a little scary. But that’s the point, isn’t it? To get out of your comfort zone and start living life differently? Why yes, I do think that is the point. And that’s what I plan to do. It won’t be easy and it won’t be something that I’ve done or experienced before but it will be worth it. All change that you create should be, right?

Peaceful…

She sipped her coffee slowly, aware that it is a luxury she does not indulge in very often now. The air was cool, which was a pleasant change from the overwhelming heat a week ago. A light breeze blew in through the open windows. She had lit just about every candle that she could find in the house. Despite the competing scents, there was just something about the cool air and windows open that required candles to be lit.

Staring out the window, she couldn’t help but reflect on this very moment. Multiple notebooks were in front of her and she had set out to make a list of the things that needed to be done. There’s the cancer list that includes records she hasn’t obtained, phone calls she hasn’t made and people she needs to follow up with. There’s the list of everyday tasks, including groceries and air filter changes. There’s a list of things that need to be decluttered in preparation for a potential home sale. There’s a list of items that might sell and a list for items to donate.

Then there’s a list of occasions that she wants to write to her son, in case she isn’t here to tell him how proud she is. There’s a list of things that she cares for in the home that she will need to share with her husband, so that he knows the passwords, the days that she pays certain bills and the regular appointments that need scheduling. There’s a list of things that she wants to accomplish before she doesn’t feel up to doing them anymore.

But in this moment, right now, the lists don’t matter. All is quiet. No one is home and a light breeze is coming through the open windows. As she sips her coffee and stares at the notebooks, she clicks her pen over and over again. The smell of cinnamon and pine fills her nose as the candle flickering in front of her steals her attention. She watches the light from the flame as it dances about, unaware of the woman mesmerized by it. The puddle of wax under the flame was clear, a stark contrast to the orange-red flame just above it. It moved about despite the silence, dancing to its own beat.

So that’s what she did. Leaving behind her notebooks and lists and pens, she walked away from them all to sit in front of the open window and watch the world. Even if just for a moment, all was calm around her as she stared out the window. The wind blew the trees with astonishing strength, the cat prowled across the grass chasing the lizards that hid amongst the blades and the cars seemed to move in slow motion as they passed her house without a second glance.

She leaned back in her chair and breathed in deeply to smell the sweet, fall aroma of the candles and the cool air. For just this moment, all was tranquil, still…peaceful.

You never know…

Two doctors appointments ago, I asked the nurse practitioner about a handicapped permit. My feet were bothering me and I get winded easy. And, well, I have Stage 4 cancer. I had been thinking about it but felt guilty asking. The moment I brought it up, the NP immediately said she would print it and have it all ready in just a few moments. She was simply waiting for me to ask. The tag office validated my documentation and my doctor and gave me the pass. I have been slowly releasing my guilt because frankly, it’s needed.

Yesterday, Joe and I stopped and parked in a handicapped spot. When we were getting in the car, the vehicle parked next to his door was pulling away. The driver rolled down her window while backing out and yelled to her passenger: “Well he doesn’t look handicapped!” and drove away.

This made my heart hurt for many reasons. The permit isn’t for Joe, it’s for his wife, who he cares for constantly, who was with him and who was diagnosed with a terminal disease. A handicapped permit is something that a doctor must approve, not just anyone, so there is – quite literally – a valid reason for having one. I felt guilty enough for even asking for such a thing and a comment like that doesn’t make a difficult situation any easier. I was in tears over a comment that was made intentionally and without regard for the impact that it would have on the person it was meant for.

I say all this to say, the impact that words have cannot be undone. We are taught early on to treat others how we want to be treated. Something that she may have forgotten has not been lost on me and sadly, her words will stay with me each time I park in a handicapped space. Our words should be chosen wisely and we should always consider the feelings of others as we pick them.

Continue to spread love, my friends…not hate.

A little straight…

When I was pregnant, I traveled to NY for my NY baby shower and it happened to be my birthday weekend. My sisters gifted me money for a new hair straightener that I had been eyeing. I was super excited and purchased it immediately (gotta love 2 day shipping on amazon!). It worked amazing and I used it constantly. 

After I shaved my head last year, I offered it to my sisters since I had no use of it for a while. They all responded with a “No way! You’ll need it soon enough!” It’s been sitting patiently in a drawer awaiting the day my hair would be long enough. 

Today, I braved the straightener. My hair went a little crazy in the process (rightfully, it wasn’t really sure what was happening) and I thought for sure a headband would be needed with all its craziness. To my surprise it all calmed down and although short, it’s settled in nicely! I’m excited for a bit more versatility in my hair styles now. I don’t know how long it’ll last (eventually IV chemo will be needed) but I’m totally enjoying it in the meantime.

My feet are sore today after all the walking this weekend (totally worth it!). I think the sand at the beach dried them out a bit and made them a little more sore too. I’m rocking my Sanuk’s today though so the extra cushion helps. I’ve always purchased my Sanuk’s at Ross, the discount store. Thanks to an incredibly generous gift card, I’ll be purchasing my very first pair of Sanuk’s on their website today. I am SO excited for that!!! ❤

It’s the little (big) things in life, friends. The moments like these that make me smile, well they make the day a little easier. Happy Monday! I am definitely too blessed to complain.💚

My weekend…

There has been a lot of travel, a ton of appointments and a bit of overall craziness these past few…weeks? Months? I’m not even sure. I can’t remember the last time I went to the beach just to be. 

Somehow the stars aligned and this weekend was beyond beautiful. We finally had our Florida fall weather and it was an incredible 75ish degrees outside as the high! Windows open? Oh, most definitely! 

Yesterday we spent the day with our dear friends and Jacob’s BFF from the womb (who is only a week away in age!). We ventured back to the pumpkin patch we visited together last year and my goodness, what a difference a year makes! The boys ran wild of course but had such a blast. They went to the petting zoo, checked out all of the pumpkins (seriously, I think they touched each one), and of course (Mom’s favorite) the hayride. It was gorgeous outside and such a blast!

Next up, we traveled back to the Choo-Choo train we rode in July and did a special ride that included a pumpkin patch visit. The boys adored the train and had fun running around the (relatively small but perfect for them) pumpkin patch. They had tons of energy (thanks to Jacob’s first Halloween cookie) and used most of it up in the playground afterwards. I am not entirely sure how that many laughs, that much fun and so many memories are allowed in just one day!

Then today. Jacob has been asking for the beach every single day this past week so we knew it was a must – it wasn’t just me getting antsy for a beach day! We enjoyed an awesome lunch with amazing company at one of our favorite places overlooking the beach. Somehow I forgot to take a picture with my in laws and Uncle Tyler. Jacob had so much fun with them and running away from the waves.

After they left for home, we drove down the beach for a bit. It wasn’t packed at all, which was super exciting for us. Though windy, the sun was shining brightly and the day was ridiculously gorgeous. I walked Jacob around for a while, looking for seashells and sand dollars. We found lots of jellyfish and made sure to stop and check each one out. He loved all the little birdies (tweet tweet!) so when he saw a big white bird, he wanted to stop and check it out (oohhhh!). This age is amazing to me. This little man loves to explore & learn and I am not quite sure who enjoys it more…Jacob learning about the world or Momma teaching him about it. It might just be one of the very best feelings ever. Especially when I get to share my own stories with him while teaching. ❤

Eventually he fell asleep, literally trying to hold his head up while his eyes were closing, my poor sweet boy – so tired!  While he slept, Joe & I enjoyed the ocean and each other. The smell, the sounds, the birds grabbing fish out of the ocean right in front of us…perfection. Just being there is calming and relaxing, especially on a day like today.

(Yes, little man totally stole my hat and wore it all day today!)

This weekend was perfect. It was exactly what I needed. A chance to enjoy this beautiful weather, make memories with family and friends and just…be. True perfection. 

Here’s to a fabulous week ahead! 💚 

The Mayo Clinic

I typically turn to “Dr Google” when I have a question and if it’s medical related, one of the first results is usually the Mayo Clinic. I find their site quite helpful in laying out information and turn to it often. So when I heard it was a top cancer hospital, I was excited to visit them. Their campus is massive but their check-in process is quick and everyone is quite friendly.

We learned a lot today. It’s interesting to hear the perspectives on my disease and what the next steps are. This was the last visit we had planned and although I totally slacked on uploading my recent documents (oops, thankfully they are working to get them!), it could not have come at a better time with my recent progression. We talked for well over an hour and the doctor was wonderful and very kind. She even gave me tips on how to organize my records!

We talked a lot about trials and some of the trials that are out there now. Immunotherapy is the big topic of discussion lately and a lot of them focus on triple negative breast cancer. Many of them also are specific to a particular genetic marker. 

After I asked my doctor about my skin two weeks ago, they requested my brain tumor to be sent off for additional genetic testing. This testing will indicate what specific markers my tumor has, what would potentially fight off those markers AND what centers have clinical trials open for them. That being said, I can make a decision today about a clinical trial but it would be TN only, not a targeted therapy specific to my markers. So it makes sense for me to wait. I was advised it takes 2 – 3 weeks and it’s been 2 so the test should be back soon.

I anticipate progression while waiting. One of my questions was whether I should continue Xeloda because it may be working in other areas. She agreed that is is possible but one of the concerns that oncologists have when cancer grows despite treatment is that the treatment (Xeloda) may actually be feeding my cancer and helping it to grow. No thanks.

I also cancelled my scans for tomorrow. I learned that the scans are not necessary for trial assessment but also that trials require that I have scans within a certain time frame of beginning, which is typically a week or two. No reason to expose myself to additional radiation. I also learned that the Xgeva (which I’ll take forever because of my bones, from what I understand) can potentially cause me to light up like crazy because it is going to work on my bones. This would cause a false positive result, which I certainly don’t want. I was also advised that my bones have holes in them from the cancer, so I need to be careful  (especially with little man) because I can potentially break a bone doing something as simple as catching Jacob. Yikes.

We also talked a lot about quality of life and what that means with different treatment options. I think it’s an important conversation to have no matter what.

I know we learned more but that’s all for now. I’m tired and there’s more to come. No treatment makes me nervous but I also think it’s important to have all the information before making a decision, and that includes my genetic markers. 

Today was a really good day of learning and I’m so glad for the visit! 💚

Xgeva…and updates

When I was doing chemo last year, we would travel back to the treatment center the next day for hydration and a shot of Neulasta, which helped my blood counts be stronger. It was a shot in my belly and Joe (sometimes my sister) would be required to warm it up ahead of time so it didn’t hurt as badly going in. One time we forgot to warm it up and whew! I could feel the difference and still recall how much that shot hurt over the others. We always joked with the nurse about losing the $3000+ shot while warming it up. One of the nurses mentioned that she had actually thought she lost it once because she forgot that the husband was warming it up and panicked. Eek!

Today we traveled to the treatment center for me to receive my first (perhaps only) monthly injection of Xgeva. We know that I have cancer in my bones and the Xeloda also pulls nutrients out of bones, making them a bit more brittle. It was described to me that my bones currently look like scaffolding inside because of the cancer and the Xeloda working in them. The Xgeva will go in and fill in all the cracks with the right nutrients. Xgeva pulls Calcium and Vitamin D out of my blood to replace it in my bones and make them stronger. It is an anti-cancer / chemo agent to some degree but its main focus is the bones. I started taking prescription supplements as well, to replace the Calcium and Vitamin D in my blood.

The shot itself was barely painful at all and was actually quite small. It was in my right arm and I learned ahead of time to warm it up and that it should be done over a longer period of time so it is less painful (1 – 2 minutes). Thankfully the nurse knew these tricks too so I barely felt a thing. There shouldn’t be any side effects, though I know what to look for just in case.

Tomorrow, we head to the Mayo Clinic in Jacksonville. What was a “standard” appointment has now become critical to me since it will be my first discussion about which clinical trials are available to me here.

Two of the centers have reached back out to me and requested that I visit them in person versus over the phone. I am completely understanding of that but feel as though I’m in between a bit of a rock and a hard place. I’d like to know the names of the clinical trials each center has available for me (based on recent scans, tests, etc which have changed slightly since each visit) so I can research and determine what trials are most appealing. But I won’t know the actual trials until I visit. See my predicament? There is a great website calling ClinicalTrials.gov that lists out ALL of the clinical trials available so I have been using that to do research but it’s rather overwhelming. There is a lot of information, some that does and does not apply to me, and honestly a lot of words that I’m not sure whether or not they do apply (medical jargon?). There are also quite a few trials that are based on tests that I still have outstanding.

So, that is why I am super curious about tomorrow’s appointment. Local treatment makes the most sense but I will go wherever and do whatever I need to in order to receive the best prognosis and treatment. We will see what tomorrow brings!

Happy Wednesday, everyone!