One sleep!!!

Jacob has been counting down the days until vacation by counting his nighttime sleeps. The adorable-ness is incredible! 

Tonight while laying in bed, Joe was showing Jacob pictures of the “big boat” online. Jacob was mesmerized, especially at the size of the massive ship. At one point he stops and says “The boat is sad.” Huh? Sad? Gently asking why, Jacob explained “because I not on it.” Oh, my heart!

Needless to say, our family is ready for this time away to unplug, decompress and create the most amazing memories together.  It’s Jacob’s first cruise and our in-laws first too. We are very fortunate to enjoy this adventure with them.

I’m determined to make 2017 the best year, yet it’s started off a little rocky. It’s not that anything particularly bad has happened, it just hasn’t lived up to my amazingly high expectations just yet. But it is only mid-January and I plan to embrace that! 

In the words of Jacob, it’s just “one sleep!” and we are off to create new adventures, make memories and laugh, a lot.

Have a wonderful weekend, my friends! ❤

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! đź’š

Where in the world…

After Joe & I were engaged, we started thinking about our honeymoon. Where in the world would we go?! The options in our minds were endless…we explored the idea of Fiji, Napa Valley, a week in a houseboat locally, Disney World, Europe and everywhere in between. Countless hours were spent researching where to go, how much it would cost and how long we could stay. Despite all of the research though, we couldn’t make up our minds!

Time continued to fly, as it often does, and all of a sudden it was a week before our wedding and we still hadn’t booked our honeymoon. Eeek! We started to research some more and decided on a cruise. There was one leaving just a few days after our wedding. Neither of us had been on a cruise before and weren’t really sure what to expect but we decided to go for it. So 3 days before our wedding, we booked it!

Little did we know at the time that we booked it, that we had picked the newest and greatest of the Norwegian Cruise Line ships – Epic. It was incredible. We spent 7 days on this ship and traveled to the Western Caribbean. We didn’t book any excursions ahead of time and decided to “wing it”.

Our first stop was Costa Maya. After a day of cocktails on an amazing beach, we walked into a local town and found a tequila shop set up in someone’s home – literally. We met the homeowner / tequila expert, as well as his daughter and a few friends of his, and spent the afternoon learning all about tequila. It was amazing! We bought as much as we could hold when we left. They didn’t even have real bottles in it so we filled all of our water bottles! He now owns a restaurant on the beach, where he sells his tequila. Someday we will visit again!

Next was Roatan, where we walked the town for hours and shopped a little. We met a local artist, learned about him and his family and enjoyed some of his artwork. It was beautiful.

Our last stop was in Cozumel. At this point, we felt relatively comfortable exploring on our own so we decided to rent a scooter and explore the island. We started by following the tour buses to the local Mayan ruins, where we learned about the history of the Mayans. Next, we decided to follow the road along the coast. We stopped every mile or two to look at the ocean. It was incredible. The waves crashed beautifully against the shore, taking the turquoise water and spilling it amongst the rocks and sand. Amazing.

We were sad when it ended and yet we couldn’t wait to experience such an epic adventure again. To celebrate being cancer free, we want to plan a dream vacation. Somewhere beautiful, possibly exotic, somewhere that we can enjoy the land, the water and the world while creating memories together. I once again feel like the choices are endless, and yet I can’t decide where to go!

Where have you traveled, that you loved? Where would you go, if you could travel anywhere in the world?