The results are in

Growing up, my parents were strict about school. We couldn’t play outside until our homework and assignments were done. Taking after my big sis, I strived for straight A’s and it was rare for a B to show up on my report card. It eventually became second nature and studying to maintain my average was the norm.

When I was in 7th grade, I took regents Earth Science. In NY, regents is a big deal. It’s a a level higher than your high school diploma because you have to take regents level classes.  If I remember correctly, you had to take 3 regents classes to earn your degree. My first attempt at this, because I did not want to take chemistry as a senior, was Earth Science. I had never encountered such a challenging class. No matter how much I tried, I was barely passing. One of the only lessons I retained was also a Saturday Schoolhouse Rocks special the week before so I was able to learn it.  This class was the first time I learned that anything above 65 was a passing grade.

I prayed a lot about that regents test. I knew it would be the hardest yet and that I didn’t know everything that would be on it. I studied hard and did the very best that I could. I was terrified that I would fail. I had never failed a class before. I needed a miracle to pass this test.

When our science teacher came in the following morning to give our grades, I saw the faces of each person after he called them up. I could tell who was genuinely concerned and who wasn’t. My name was called and I walked up the aisle with sweaty palms. I looked at the teacher and he moved his paper down to show me my grade. 67. I had passed by two points. I felt the air leave my lungs finally and walked back to my desk. I was both terrified that I had earned a 67 and ecstatic that I had passed this class, though barely. My miracle had happened.

From that point forward, I didn’t take school or my grades for granted. I was very conscious of my efforts, my studying and my grades throughout the year. I didn’t want to think about failing ever again.

My PS called this morning with my biopsy results. As expected, the nodules on my skin are cancer. I exhaled and told my doctor that he promised he would only call with good results and laughed. I think he was more upset about the results than me. Cancer sucks but I knew that the likelihood that it wasn’t cancer was minimal.

When my RO called me Wednesday morning to ensure I received my scan results, I mentioned that I was trying not to get my hopes up but that it was hard not to. Her response was, “I know. But regardless of the results, we have a treatment option locally and a visit to MD Anderson. With these scan results, I would consider this optimistic.”  It made my heart smile.

She is right. We will continue on this path and find a treatment option that works well for me…one that will eliminate this disease so I can continue to live. 

Thank you all for the continued love and support that you show my family. Your prayers are worth their weight in gold and I am eternally grateful for every single one of them. 💚

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.

What’s missing…

Today while getting ready I did not have to take an extra 20ish minutes of mine and my husband’s time. No covering in silvadene, xeroform, bandages and netting. Just a few minutes of cleaning the one wound with saline, applying the Santyl and covering with a saline soaked gauze and a bandage. Sounds like a lot but I don’t think the entire process took 5 minutes  – much less than before!

I’ll have to change the saline in about 3 – 4 hours but it’s a much easier process. I won’t pretend it doesn’t hurt because it’s pretty painful. I would compare it to taking a shower when my chest was all open wounds. It feels like that on the open wound. Hopefully this causes it to heal quickly! 

Happy Wednesday, friends! Try to find a way to spread some love today. 💚

Scan results…

Hey, so remember that time today when my MO called me to give me good news about my scan results?!

No internal progression!!

Yeah…I’m going to say that again…NO INTERNAL PROGRESSION!!

My lymph nodes have resolved and my bone mets appear stable with no progression. Yes, cancer but no progression – Yay!!!

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. 🎃