It’s been an eventful week and it’s not even over yet…

Caleb and I arrived in Houston late Sunday night (or early Monday morning if you want to be technical). I had a PET scan Monday afternoon followed by my first radiation appointment.

Radiation did not start off as smoothly as I would have hoped. I wish, during my simulation, someone had warned me about the first appointment or two. My first appointment was 90 minutes long, was eventually cancelled, and no radiation was given. Most of the time was spent with me in the waiting room or me on the table while the radiation team took scans and measurements. Ultimately, something wasn’t lining up and they stopped the appointment. I later found out that, because the information sent from one machine to another did not match up with the typed up plan, the team wasn’t comfortable administering the radiation. As frustrating as that was, I was incredibly thankful for how careful MD Anderson is when it comes to treatment. The checks and balances they have in place are one of the reasons they are the best at what they do.

Day two of radiation was so much harder than I expected it to be. Because it was technically the first appointment, the techs had to take a lot of images and make sure everything lined up before the radiation could be given. I had to lie still, with my arm over my head, blinded by goggles (I’ll explain those later) for 45 minutes. A friend had prepared me for the pain I would feel in my arm but I never dreamed it would hurt as bad as it did. At one point, I asked the tech if I could take a 30 second break to relax my arm (that felt both numb and like it was on fire at the same time). She told me no, saying we were “almost done.” Well, let me tell you that “almost done” was not soon enough. 

Now, back to those goggles; not every patient has to wear them. To protect my heart from the radiation, I have to hold my breath while it is given, effectively using my diaphragm to push my heart out of the “danger zone.” The goggles show a screen that helps you to figure out the correct positioning when taking in the breath. As helpful as that is, it also blocks out the entire room. You can hear the techs if they come in and the machines as the move around your body, but you are blind to it. I didn’t realize how strange that would make me feel. 

The pain coupled with the disorientation from the goggles I experienced triggered a mild panic attack. By the time we were actually finished, I was shaking all over and on the verge of tears. So, for any of you that may have to undergo radiation, let me give you two pieces of advice:  1) Be prepared for the first appointment to basically suck. 2) As a new friend advised me, once you know how you’ll be positioned for the treatment, stretch stretch stretch. Get used to the position, stretch any muscles you can that are involved, and try to learn to relax those muscles as well. The tenser I am while I am on the table, the more my shoulder/elbow/arm seem to hurt.

Thankfully, I have had two more radiation appointments since then and they felt like a breeze in comparison! They’re so much quicker and I’m getting more used to it all. 

Last night, the results of my PET scan were posted to my patient portal. My first PET scan showed activity where the tumor had been removed. I opened up the results to see if the activity was still present in that area. I’ve had a lump that doctors were calling a seroma; they suspected it was due to post-surgical changes/healing. The lump feels eerily similar to my tumor but I trusted the doctors. It has gone down in size somewhat since I began chemotherapy in October. It, however, is still present and Dr. Ravi isn’t entirely sure it is a result of post-surgical changes; he told me it shouldn’t be present this long after. The PET scan showed there is still activity in that region, but since we are already treating the area with radiation and then surgery, he isn’t worried. However, a small nodule was discovered near my left buttock. The report states that it could be due to something like an injection in that area but also may be a soft tissue sarcoma and requires close follow-up monitoring. In shock (as I was absolutely not expecting anything like that to be present), I said, “I’m going to lose my butt too?!” (Weird, I know, but that’s me). Tears followed soon after. Needless to say, I (and Caleb) are taking this quite hard. How could something form that quickly? It didn’t show up on my CT scan a week earlier. I know this cancer is aggressive but a week?! I’m hoping that just means it isn’t what we hope it’s not.

I am doing my very best to keep my panic to a minimum. Dr. Ravi called me today to discuss the results and is ordering a biopsy for the nodule to make sure it’s nothing; his exact words were “I want to dot all the I’s and cross all the T’s.” I have no idea how quickly they will be able to get it scheduled or how long results take to come back, so all I can do is try to keep calm and wait. A friend who had this cancer said that she has experienced numerous scares over the years since she was diagnosed and treated. Her advice was to be prepared for these scares but not let them or the fear rule your life. So I remind myself that I am at the very best medical center with the very best sarcoma team; no matter what those results say, I am confident they will come up with a plan and I will continue to kick this cancer’s ass.

Thank you all for your love and prayers; keep them coming, especially for my family.