On Thursday Mathew had a PET scan.
PET is short for positron emission tomography. Here is a Pdf link from the Cancer Advocacy Coalition of Canada, detailing the purpose of the scan and how it works.
Mathew couldn’t eat for 6 hours prior to the test but was able to sip water and have his 9:30 am morphine medicine. He also had an Ativan shortly before leaving for the hospital because of his anxiety. He didn’t sleep at all on Wednesday night, partly because of pain and partly because of the upcoming test (he had to have yet another needle).
John parked the truck while I registered Mathew and took him down the hall to the Nuclear Medicine department. While we waited for John to join us Mathew asked me if this test was to detect if tumours were in his lung and if his cancer was life-threatening. I asked him, cautiously, if he really wanted to know the answers and he said he did. I answered him yes to both questions. He fell silent for a little while before changing the subject to the game on his iPad mini. I know he is more aware of what is going on than he is telling us. He is just absorbing at his pace and quietly letting me know in his good time.
John joined us and while we were waiting for someone to call for Mathew, Kristen texted us that her boyfriend had business at the adjacent university so she would walk over and join us. Imagine my surprise (horror?!) when I saw her walking towards us in a bathrobe!! It seems the zipper in the hoodie she borrowed from boyfriend broke and she wanted something else of his that was warm…so he gave her his full-length bathrobe. She wore it walking from the university! Oh the embarrassment of it all ~ Mathew clued in to the final indignity when he remarked that her shoes didn’t fit the outfit! (yes, really… or how about the shoes matching the nice outfit she wore underneath the bathrobe?) Of course she blended right in with her bathrobe and no one noticed.
When the technologist came to start the paperwork, etc, she actually thought Mathew was going to sail off with her without his entourage. It didn’t go the way she planned; I explained that he is intellectually impaired and operates at an 8 year old level. Mathew is fine with me saying this in public as he is aware that it will make people treat him better when they understand he acts “differently” because he is disabled. It is the quickest way to get what we want and he won’t go anywhere without his best buddy to hang on to. This time though we all accompanied him through the paperwork and explanation of the PET scan procedure. I couldn’t help but notice a curious ring the technologist wore. It flashed in front of my face while she moved about Mathew (anyone who knows me knows I adore looking at jewellery in any form!). This ring however was not anything traditional in fact, it looked like a tiny hospital band encased in plastic. I finally asked her about it and it is a radioactive detector. Pretty cool!
After the paperwork we walked down the hall to where the PET scan was going to take place. At that point John and Kristen were sent on their way and I accompanied Mathew to PET department. Normally each patient is injected with the dye particular to their needs and then left in a small room to stay motionless for 45 minutes or so while the radioactive particles travel through the body. Mathew was mildly agitated but I could see his anxiety ratcheting up. The technologist didn’t want me being dosed with radioactive material so she had me sit outside the room with a small garbage can leaving the door open a bit for me to look through. Mathew started to cry and the technologist couldn’t stand it. She let me in. I reassured her that I had no problem being dosed with whatever Mathew was receiving; after all it was only one time and not on a long, daily basis the technicians are exposed to.
Mathew had the IV hooked up and had his blood sugar tested. That little needle hurt the worst. If a person’s blood sugar registers 11 then the test can’t be performed – there is too much sugar in the blood to start with. The idea is for the glucose in the injected material to adhere to those areas requiring more energy (sugar) in the body ~ with cancer tumours using huge amounts of sugar to fuel their growth. Mathew’s sugars were 5.4 so were within the normal range.
The serum was injected via the IV in his hand and all went well until Mathew went to adjust his shorts and forgot he had all that tubing and needle in his hand. It hit something and moved in his vein and he let out a scream then started crying in earnest. The lady was able to take the IV by that time anyway and soon after Mathew dozed off for most of the waiting period.
Once the machine was ready for him, he plopped into the wheelchair and we took him around the corner to the machine. The staff put foam under his knees to make him comfortable and then had him put his hands on his stomach and wrapped him up (kind of like a straight jacket). You have to be absolutely still for the 20 minutes the test takes and holding your arms up can be too difficult. This made it easy for him to lie as still as possible.
While the test took place I called the patient advocate’s office located in the hospital. Earlier this week we learned that the second set of CT scans were apparently misinterpreted and so nodules in his lungs that were deemed “inconsequential” actually aren’t. That was unacceptable after the bone scan coming back negative when in actual fact, his 3” tumour could clearly be seen. We spent this past week absorbing this news in shock and once again, angry that this error could occur. I spoke to the office and explained our unfortunate set of circumstances. I requested that all tests, including this PET scan, be available to the Oncologist we are meeting with on Tuesday.
This is an extremely anxious time for us. How is one to feel when the doctor tells you that the initial prognosis has possibly changed to something much worse?