Simulation

 Simulation

 

I recently went to Sloan to have my mold shaped for radiation.  I first was put through the Ct machine. I'm not sure if it was on or taking some kind of measurement or image. I didn't hear it come on, so I'm not entirely sure what it did. Then, they heated up, what seems to be a material similar to plastic, and they molded it to my head and shoulders. The material was very warm, bordering on hot. Thankfully, unlike the material at my transplant hospital, this material had a face cut out. If it didn't, I would have definitely been claustrophobic, as they strap the mold to the Ct table with clasps or clips. You are really pinned down. It is important that you don't move when getting radiation as everything is measured to the milometer. They did the mold while I was on the table of a Ct machine. They kept pressing the material against my body to make it as accurate as possible. It also needed some time to cool down while it was being molded to me, otherwise, they said it could shrink. When they felt it was cool enough, I was sent into the Ct scan and some images were taken. Then, they marked the mold in certain places with a marker. It took maybe a half an hour to do the whole process.

 Medical Oncologist/Radiation Oncologist/MRI

 

Two days ago, I saw the medical oncologist. He told me that the cancer that was on the parotid gland actually came from the skin cancer that was on my ear. He said before MOHS surgery, there had to be at least one cell that migrated to my parotid. The other doctors I saw, said it wasn't from my ear. However, he also told me the cancer was squamous cell cancer and that it would be ultra rare to just get squamous cell cancer on the parotid without it being skin cancer. He also said it was an aggressive cancer which I did not like the sound of. He told me they usually prescribe immunotherapy along with the radiation but in my case, because I had a double lung transplant, it wasn't an option. If i had only had a kidney transplant, they would still proceed, because I could always go on dialysis and get another kidney at a later time. The immunotherapy ramps up the immune system to recognize foreign bodies and attack. He also said that in studies, chemo therapy did not really seem to show much of a difference in terms of cancer coming back, it just makes you sicker, as it's poisonous.  It was a lot to take in. I told him I was scared and he said there was no reason not to be optimistic.

I then saw a radiation oncologist in a telehealth visit. I am going to Sloan Kettering for my care and he operates out of a different location. They wanted him to see me even though the appointment with him might have been scheduled as a mistake seeing as he's not from my center. He talked more about proton therapy, which is apparently a type of radiation. He said there isn't much of a difference in effectiveness but there are slightly less side effects than traditional radiation. He also mentioned it could be difficult to get insurance to cover it and there would be some hoops to jump through as the machine used to do the therapy costs millions of dollars and usually insurance doesn't want to pay all that money. I decided I'd rather just stick with traditional radiation as it's already been a long time that I've had this cancer and I don't want to delay treatment any further.

 I had another head and neck MRI with contrast, yesterday, as well, at Sloan.They want to check and make sure that no other tumors have grown. The radiation oncologist said the PET scan didn't really show any other tumors so he's pretty sure the MRI won't show anything new.  I took some calming medicine as I'm claustrophobic. I closed my eyes the second I was on the table. I was most scared when I first went in because you can see light and then it gets darker and darker as they put you into the machine. Thankfully the calming medicine helped and I felt I was starting to drift off into sleep a few times.

 I'm guessing I may get the results of the MRI tomorrow as I'm seeing yet another radiation oncologist, this time, from the right facility. 

 Radiation Oncologist PET Scan

 

I saw the radiation oncologist at my transplant center even though I had no intentions of doing radiation at my center as it takes us two hours to get there, and it's a headache to get to. He told us that the cancer had invaded the nerve and that the lymph nodes that were removed, came back benign. This was news to us. My surgeon never told us any of that. He also said he didn't think the cancer spread. That still didn't relieve my anxiety about it spreading. He told me I would need radiation for 6 weeks, 5 days a week. He showed us this plastic board that would be molded to my face and, I believe, upper shoulders. He asked if I was claustrophobic, to which I replied, "Yes." The oncologist said, I might need to have my doctor prescribe Ativan for the first week of radiation. He said it would take somewhere between 5-10 minutes. They don't want you to move at all, as it's targeted very precisely to hit certain areas.  He told me after the first week, I would most likely not have any side effects. However, he said that after that, I would feel like I had a bad sunburn, possibly have dry mouth, and have sores in my mouth. 

I called up Memorial Sloan Kettering, and I got an appointment to see a medical oncologist and a radiation oncologist for the 16th, and 17th of this month. They told me they would do the work of getting my reports and radiology images. This was a big weight lifted, as I wasn't sure how I was going to get the images to them. My surgeons office, who originally prescribed the MRI and ultrasound, was not too helpful. 

I had a lot of anxiety waiting for the PET scan and the results it might yield. I did a lot of grounding meditations and box breathing. I also made sure to get to sound bowl healing class and I spent lots of time with my family, to distract myself. My brother just happened to buy Dr. Mario for the original Nintendo Entertainment System. We used to play that a lot as kids, so we played that and we had such a fun time. I spend Friday afternoons and nights with my sister and her two girls and we always have a good time. I spent some quality time with my mom as well. 

The results came back that I did not have cancer anywhere else. This was on an unseasonably warm day, with temperatures in the mid 70's. It was one of the best days I had in a long time. I had just gotten things scheduled at Sloan, and then I got the news that the cancer hadn't spread. I went to the park with my niece, and we sat on a bench and ate a hotdog from the hotdog truck. I took a drive with good music and the windows rolled down, and then later went back to the park to spend more time on a bench just enjoying the weather. I had sprained my foot a while ago, so I couldn't walk around the park, so I did the next best thing. Being in nature is very grounding for me.