Cozumel…

Joe & I have had the luxury of visiting Cozumel twice in our short married lives. I have never seen such amazing beaches before. We took a page out of our honeymoon book and decided to tour the island on Monday. With 5 of us, we opted to rent a Jeep – a stick shift, to Joe’s delight.

We drove the entire island, saw the incredible water and enjoyed a yummy Margarita. The day was magnificent. We even had time to grab some vanilla, made locally.

I remember visiting Cozumel on our honeymoon cruise. I sat on the rocks and watched the ocean wash up in front of me. The bright blue water bursting amongst the rocks, turning white with the spray and retreating, just to do it all over again.  I was in awe. Living in Florida, I have some pretty awesome beaches near me…but this was spectacular. 

The beaches are just…breathtaking. The water is the most amazing blue, they are either rock or sand depending on where you go and the waves crash magnificently in front of you. Jacob could feel the spray of the waves while taking in the sites in Daddy’s arms. It was a sight to see. We were excited to visit again and hope to go back again some day.

Mesmerized…

Joe & I booked a cruise last minute for our honeymoon. Booked just a week or so before it was set to sail, a friend of ours asked what boat we were taking for our first ever cruise. “The Norwegian Epic. Apparently our room has a balcony so that’s cool.” My friend stared at me blankly. She then explained that not only was it in its first year, this ship was also the biggest ship in the Norwegian fleet. Well, then. I suppose we made a good choice!

We have been on a few cruises since then but this was Jacob’s first – and it was only fitting that he joined us on the Epic once again. Joe’s parents joined us too – and memories are already being made!

Jacob was Mr Cool Kid from the start of the morning – complete with sunglasses, his first pair of Sanuk flip-flops & all. After a small tour of the ship and lunch, Jacob took a mini nap so he was ready for the evening.

We were treated to dinner & a show at Cirque du Soliel. Anticipating a large theater, you can imagine our surprise when we walked in to a cozy room and were seated at a table with front row seats. If I moved my head the wrong way, it might have been knocked when the acrobats swung from the ceiling!

To say that Jacob was mesmerized is an understatement. A small fright at the music initially, he sat up in his chair with his jaw dropped the entire time. He barely ate, he was so in awe of the show! He danced to the music, stared in awe of the incredible artists and even gave a high five to our waiter at the end.

It was a remarkable first night of our cruise. After the show, we all sat on the balcony and stared out at the bright moon rising in the sky and the stars twinkling all around the sky. It was perfect.

Just a plain-ole-Monday…

Growing up, my parents had a boat. We enjoyed many summers on the local river, spent quite a few nights camping and have a lot of stories and memories to share. It was a point of fun (and frustration) throughout a few years of childhood. My big sister and I took boat lessons and I took pride in being the copilot of my parent’s boat. I could drive it, dock it and set the anchor at a young age. Though I lost many of those talents over the years, they are memories that my sisters and I laugh and talk about now.

The excitement of the past few days didn’t end today. We went out for a boat ride with friends. We spent the day on the river, the boys played at Blue Springs park while checking out the manatees (though they were more interested in running around the grass) and we cooked out at Hontoon Island. We shared stories, enjoyed the sun and were shocked by the massive alligator we saw sunbathing beside us. It was a gorgeous Florida day.

There is an old tree that my family and I always stop to take pictures at. Daddy stuck his hand through it and startled Jacob. Well, that sent him running and screaming (nothing a quick snuggle couldn’t fix). I happened to capture the moment on camera without realizing it. His face is quite priceless!

Despite getting yelled at by the park attendant (apparently they closed 15 minutes before we returned…oops!), the day was amazing. My boys, my momma and Jacob’s friend from the womb (and our good friends!) and the day was built for memory making.

I hope all of you enjoyed the day after Christmas and were able to snuggle your family and enjoy every moment. Happy Monday!

Today’s excitement

I’ve mentioned before that once diagnosed with cancer, every bump and bruise is cause for concern. I try not to be a hypochondriac but frankly, it’s better to get ahead of things when possible.

At about 4am on Thursday morning, I woke up from a terrible pain in my right side. It was worse when laying down and I noticed a rattling in my right chest when I breathed. Sigh. Again?! I was concerned that the fluid was back and texted the nurse first thing. She called the pulmonary doctor and he wanted to see me immediately. We drove down town and his office was able to do an x-ray in-house. The doctor listened to my lungs, reviewed the x-ray and indicated that there was not a single drop of fluid was in my lungs – YAY! The pain I feel in my chest is likely inflammation. Now that my right lung is expanding properly, it is rubbing against my chest wall. This is normal but since it wasn’t doing that for a bit, the rubbing is causing inflammation, which is causing the pain. It’ll eventually go away but I need to try not to lay on that side for a while. Whew! The doctor also mentioned that because there was not a drop of fluid, he would take it as a sign that the drug is potentially worked already. I’ll take it! Of course, when I was checking out the x-ray I had to ask all about the other organs that I saw. Nothing like a little anatomy lesson on a random Thursday, right? 😉

Shortly after that appointment, a headache began. It progressively became worse throughout the day and by dinnertime I was lying in bed with tears in my eyes from the pain. I have suffered migraines before but thankfully it’s been a while, excluding my brain tumor. I ended up using a heating pad on my head, turning off all of the lights and taking medicine that knocked me out so I slept for over 12 hours. I didn’t have a headache throughout the night but once I woke up, I could feel it creeping back in. I texted the nurse and the doctor this morning and asked if it could be a side effect of Afinitor, since the headaches just started. It’s possible, though not a common side effect of the drug. It’s listed on their website but not something they see often. An urgent CT was needed and after a quick call from my doctor’s office, they could see me in an hour. So…off we went. I had hoped to use my port to give my veins a break (apparently the script needs to be written a certain way for that, which I learned recently and was done today) but only a nurse can access my port and I wasn’t up for waiting around so they used my veins. Not a big deal, but it hurts a little more and I worry about scarring since I’m limited to one arm.

I try not to worry about scans in general because I can’t change the results (no studying here!) but this headache is intense. Despite medicine, it still creeps in and waits around for the medicine to wear off so that it can take over again. It’s rough. Thankfully, the CT scan was listed as STAT and they called my doctor with the results within an hour. He called me happily to report – STABILITY! No cancer cells were found in my brain. I can’t express what a relief this is. With the intensity of these headaches, I thought for sure it would be a tumor.

So what in the world is causing them?! Well, it’s possibly a side effect of Afinitor, which sucks. So I’ll see the neurologist again and talk about how to keep these headaches away in the hopes of continuing on with this treatment plan.

In other news, my oncologist shared that he received a call from a pharmaceutical oncologist about the request for Afinitor to be covered under my health insurance. They were sympathetic to my case and actually indicated that they are working on medical evidence that supports this drug being used with my type of cancer (triple negative). Just a little bit later and I received an automated call indicating that the appeal process determined it WOULD COVER the cost of this drug! WHAT?! I wanted to confirm what I thought my ears heard, so I called the specialty pharmacy and had them look me up. Sure enough, the appeal was APPROVED!! YAY!!! For some reason, I have to go through another approval process (despite many questions of my trying to understand their process and them repeating the same thing they just said, I still don’t get it but that’s ok), which should take about 24 hours and then it should be officially approved and on its way to me. WAHOO! Though I have samples, this news is incredibly exciting!

So, though it’s been a crazy few days, the good news puts me at ease. My head is clear (well, aside from my slight craziness), there is no fluid in my lungs and my treatment drug is approved.

Now, I breathe. The holidays are literally around the corner (“Just two sleeps ‘til Christmas!” – per Jacob) and I plan to enjoy these moments with my family. Yes, the headaches suck but I’m doing my best to combat them so they don’t interrupt my days. I am breathing a massive sigh of relief at the last two days and I am so glad that I can rest easy over this weekend, knowing that my body is doing all that it can to fight back this disease.

I hope you all take today to enjoy each other, your family and your loved ones. Though all days are important, this holiday is special and should be treasured along with all of the other magical moments that you have in your life. I wish you all nothing but peace, happiness, laughter and love this season, and always.

Life is precious

I am a firm believer in spreading the love. That doesn’t have to be a “big” thing. When you have a dream about someone, share it. When someone is on your mind, tell them. If a memory pops in your head and makes you smile, make that person smile too. You never know if that person may need a hug, or a word of encouragement or even just a simple hello.

This past weekend, my family lost someone. She was even younger than me, it was completely unexpected and she was carrying her daughter in her belly. It’s heart wrenching and I don’t have the words to express how I feel about it all.

There are moments in life that give us pause and force us to reflect on the life that we have been blessed with so far. We need to rejoice in those moments. Yes, we all have regrets and sadness. But we all have happy times and joy too. Sometimes we need to dig a little deeper to find the good moments. Sometimes a small gesture or hello can change someone’s world.

Please keep my cousin and his sweet family in your prayers. They need to be wrapped in love through these times and going forward. We love you so much, David.

Keep spreading the love.

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.

Day 1 down!

Our first day of travel to MD Anderson is complete! We decided to drive because plane tickets were outrageous for the 3 of us. And who doesn’t love a good road trip?! Jacob did great and a book on tape kept things interesting for me and Joe. 

We spent the night in New Orleans, which is farther than we intended to drive. It was a fun (and early) evening. Now to go enjoy some of this city before we hit the road again!

P.S. This time change is no joke, Jacob was up at 530! 😩

I believe in miracles…

Do you believe in Miracles? Those astounding, unbelievable, unexplainable, absolutely incredible, dumbfounding, completely bewildering, shocking moments? Those events that you cannot explain in any way and that seem impossible?

Tonight, we are praying for one.

A miracle, by definition from dictionary.com, is “an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause”.

I know that I cannot change the results of my biopsy. My skin is what it is. And it is extremely unlikely for it to be anything but cancer. And I know that. I accepted that, weeks ago. I am moving forward and making plans and phone calls based on the fact that I have skin progression.

But.

My tumor markers were perfect when last taken two weeks ago. I have no internal progression as of Tuesday. Part of the area in question is on my prior radiation area, which avoided cancer before. So…why? I can’t help but let my mind wander to the impossible…the improbable. What if?

What if it isn’t cancer? What if it’s just a skin issue because of everything that I have been through? What if it’s part of my detox? What if…it’s just a miracle?

The waiting is the hard part. Like I said, I cannot change the results. I can just change my mindset. And tonight, I am praying that my phone call tomorrow (hopefully) will be that of inexplicable awe. I hope to hear the words “negative” and “not cancer”. I would even take a swear word or two that promotes the lack of cancer.

It is what it is and we will deal with whatever news comes our way. But I cannot help but hope and pray for a miracle tonight.

My Tuesday Updates…

Yesterday I texted my RO because of the pain in my chest. I ended up going in yesterday for my appointment instead of this morning. We had a long visit (I love her) and talked a lot about my cancer. 

I have been wanting to do a biopsy on my skin for the last two weeks. I saw my nurse practitioner last Friday to help explain my Foundation One testing results to me (the results that show what drugs and trials I qualify for). When I showed her my skin, she  asked why it was determined to be progression. I showed her some of the other areas and she agreed that it could be viewed that way. This reiterated my biopsy question and she said that she would rather wait until after my scans today to see if there is progression elsewhere.

Showing my skin to the RO and talking about the last week, she commented that they looked better than the last time she saw them. After some discussion, she decided that we could do a biopsy. We will move forward with the assumption that it’s cancer, as we think it is, but we will know for sure. Also, the hormone receptors will be done again to make sure my skin is triple negative, since my cancer has morphed before. This is good news! I don’t expect the biopsy to come back negative but I am so glad that we I’ll know for sure that it’s cancer and the receptor status.

There is also concern over my skin not being fully healed by now. The area that I am double radiated still has a decent amount of raw skin and there are a few other, smaller patches. So the RO took a picture and sent it to a wound care nurse, while also having the PS surgeon check it out since I was seeing him for the biopsy anyway.

The PS numbed the radiated area then shaved off the first layer of the burn. It bled a lot, which is actually a really good sign. The first layer was likely dead skin mixed with silvadene and every thing underneath looked good. So after hearing from the wound care nurse, the RO (and PS agreed) is changing up my skin regimen. I will start a different topical cream called santyl on the radiation burn and use saline soaked gauze to clean it and cover the area, along with a large bandage. I can also use it on the smaller areas that are still healing or I can use vaseline. Do you know what this means? No more silvadene and bandages! Happy dance! 💃💃💃 I’ll have to change the gauze every 3-4 hours but hopefully that means I’ll start healing again!

So I had the biopsy yesterday, where the PS removed 2 larger skin nodules and sewed me up. Today, we spent the entire day – literally – doing scans. I had to have a CT scan of my chest and andomen, which (this location) required me to drink a contrast 2 hours before my scan. I also had my first ever bone scan, which required a radiactive-like substance to be injected 3 hours prior to the scan. The CT scan is pretty routine for me now and it’s over pretty quick. The bone scan was interesting because it took about an hour and required me to lay flat while it took pictures of my entire body. Similar to a PET scan, however I watched my body appear on the screen in front of me. I also watched as my joints lit up from the dye that was injected into me. In addition to the full body scan, the technician also took pictures of my arms, my skull (particularly the area that I had surgery) and my chest. I inquired as to why the extra pictures and if this was a bad sign and he said quite the opposite, that the radiologist reviewing my scans has never met me so he will only be reviewing my scans and not me. So any additional information or scans that can be provided is helpful to his assessment. Maybe he tells everyone this or maybe not but it made me feel better.

So now we wait. I told Joe I feel a little stuck right now…that I don’t even have a “choose your own adventure” route because it all depends on my scans and biopsy results. What treatment do I do? Where do I go? For now, I wait. I can’t change the results or the treatment options so once I have all of the facts, I can move forward. 💚

Happy Halloween!

Jacob has always made a face that looks exactly like his big cousin Jackson. It’s a face where he is so excited that he is not entirely sure how to contain his enthusiasm. He clenches his teeth, partially smiles and gets a slightly crazed look in his eyes. It always cracks us up, especially when the two of them do it together. Even cousin Jeremiah has the look!

When discussing what Jacob would be for Halloween, I remembered that Jackson was Thomas the Train when he was Jacob’s age and knew instantly that’s what Jacob should be. Unfortunately, we didn’t create his costume until the day before Halloween so it took all day. But it was totally worth it!

Jacob wanted nothing to do with the train at first. He actually cried hysterically everytime he saw it. Then around dinnertime, Joe and I were in the kitchen and glanced at Jacob…he had made his way into the train and was sitting and playing. I guess he liked it!

He kept waking up throughout the night asking for Thomas the Choo-Choo and when he would see his friend Vincenzo  (who we were trick or treating with). We kept reminding him that he had just 1 more sleep and then it was Halloween! He was so excited . 

When we brought him and his train to daycare, his class was so excited to see him and his outfit. And all the kids looked adorable! He couldn’t wait to put on his train for the parade. We helped him in it, secured him and he started walking. He made it about 5 steps and started crying. It was too heavy…oops! We took it off and he wanted it back on, which we did but he would only make it a few steps because it was too heavy. Eek! At least he was the cutest little conductor for the parade!

We brought the train home and tried to lighten it for him. He saw his friend Vincenzo in his train for trick or treating  (they were smart and made it proportionate!) and couldn’t wait to get in…well, after a little coaxing. 😉 A few pictures and wandering later and he was done. Train off and it was time for him to make a run for it while trick or treating!

The two boys were adorable together. They quickly caught on to how to ask for candy in their perfect toddler voices, they thanked everyone and even wished them a Happy Halloween! At one point, Vincenzo was a little ahead of Jacob and Vincenzo yelled for him to hurry up. Jacob replied, “I coming!” and took off running after him. Oh, the cuteness! 😍

The costume didn’t work out perfectly but we had fun making it and Jacob had fun putting it on and taking it off. We had a blast at the parade and trick or treating. The Halloween fun was what mattered and the memories are priceless. 🎃