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. 💚

Off we go!

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Anytime we travel, we always end up going to bed way too late the night before preparing and yet we wake up bright & early ready to get moving. The excitement immediately kicks in and caffeine is almost unnecessary because my mind starts working immediately to accomplish the last minute tasks and get out the door on time.

I was asked to come in early today for my final treatment because the machine will be down from 8am – 845am. I had the option to go after but I didn’t want to risk not having treatment if the machine needed more time. So today we are up extra early and starting our day before the sun has fully risen.  It is the end of this journey and the beginning of something great that is rising on the horizon.

Jacob wasn’t really feeling the excitement this morning but Joe & I are giddy with it. And thanks to my sweet friend, my necklace is on point for today! (That’s a saying, right?)  Oh, and the Phoenix Alex & Ani bracelet my husband spotted (the last in stock) and surprised me with!

Happy Wednesday, friends! What new journey are you starting?

Marked

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So I misunderstood somewhere along the way. I thought after being marked up today for radiation, I would then actually start radiation if I felt up to it. Not quite. Joe had the same understanding as me though, so I’m not entirely crazy.

Today was my setup, or mapping, appointment at the radiation oncology office. First step, the nurses had me lay down to get ready for the CT scan, with a nice view of the beach to look at above me. There was a pillow lying flat under my head that was filled similar to the way a bean bag would be. My arms were raised above my head and my head was turned to my right. The radiation oncologist, along with the help of the nurses, increased and decreased the air inside of the pillow while moving me around a bit. The air was then removed and the beans inside the pillow formed a mold of my head and arms. This will help ensure that I sit still throughout the treatment.

Next was the scan, which was done in a number of different ways. I had a regular scan done initially, where I sat inside the machine while it scanned and was then pulled back out. Next I had to hold my breath for 30 seconds while they marked certain areas of my chest. I had to hold my breath for another 30 seconds to verify whether or not I am consistent in the way I move when I hold my breath.   Then I had to hold my breath for 30 seconds while inside the machine. Thankfully, the doctor had told me this ahead of time so that I could practice holding my breath prior to today. It was challenging to expand my chest fully after surgery and after each expansion so I’m glad that I had the weeks to practice. When I have the actual radiation, part of my treatment will require that I hold my breath for 20 – 25 seconds at a time. This helps to lift my chest and lower my heart so that it is not touched by the beams.

After the scans, I was pulled back out and they made some additional markings on my chest and then placed waterproof clear tape over the areas they marked and took pictures. Three down the center of my chest and one on each side, for a total of 5 marks. If the tape falls off or starts to peel, I need to contact the doctor and have them align the tape again. Lastly, the doctor confirmed that the scans were sufficient for her planning.

Next, the doctor will review the scans and determine exactly where the radiation needs to be directed. The markings will be used as the initial roadmap for my next appointment. I will eventually have small tattoos, each about the size of a freckle, which will help guide the radiation beams as well. As you can imagine, their allotted margin of error is miniscule so many precautions are taken to ensure accuracy.

So, that’s that for today. Once the doctor has put together the final plan, and my insurance approves the treatment, the office will call me to schedule the radiation. I should start within 7 – 10 days. I’m hoping for sooner rather than later, since it will be Monday through Friday for 6 weeks.

Side note, why are my glasses always crooked in the pictures that I post here?!  Are they always crooked?!  Eek!