August 16, 2024
We are so tired right now and David is asleep in his favorite spot on the couch. I decided to update the blog journal while it was still fresh and I was still processing it and I wouldn’t have to bring it back to mind in a few days when I get around to writing something. We got up around 5:30 this morning to shower and head over for the PET scan. David could not eat before the scan and decided to hold off on his meds as well because one of the BP meds he takes tends to raise his glucose a little. At least that is what we suspect from all of our unbidden knowledge of these experiences. We both slept ok although he got up several times during the night and said he was having some pains and difficulty urinating. He did take another one of his Flomax which Dr. B has told him he could do, and he said it seemed to be helping by the time he got up for good. We checked out and made it to the imaging center by 7:30. As we got off 75 on to Howell Mill Road, we got behind a white-haired gentleman in a little white convertible. Top down and flying along at 7:30 in the morning. He pulled into the parking deck ahead of us and we ended up in the imaging suite around the same time. He was dressed in shorts and a golf shirt and had a bit of a pep to his step. He chatted with the front desk person and then, when he was called back, we heard him telling the tech that he “was doing great for someone of 86 years” I told David I wished we knew how to relax like that and just let things be. Top down at 7:30 in the morning coming for a scan that would be a herald of possibly more discouraging news. He agreed and said it was definitely preferable to the anxiety we continued to feel over this thing.
I like going to this place for his PET scans because they allow me to go back to area with him. There is a little waiting area that overlooks the interstate where I wait each time. I guess I feel better knowing I am right outside the little room where he has to wait after receiving the radiotracer and then right outside the room where they do the scan. I never talk to him but I do see him coming in and out and that is pretty damn comforting when the other half of your soul is having any sort of procedure like this done.
The tech called him back, and so I got up as I usually do. She told us that I could come back for a few minutes while she explained the process but that she would need to walk me back out to the main waiting room as they did not allow visitors back there anymore. I know David saw the panic on my face, and we both sort of said at the same time that I was always allowed back. She was very nice and you could tell she was uncomfortable but she said they couldn’t allow it anymore. Why does it seem like every thing is against us? Like every little thing. And I know it isn’t. I know I can enumerate a litany of blessings right now but still…it meant something to both of us. At any rate, she took us into a little lab area and explained the process we already knew. She was ready to return me to the waiting room and I asked if I could stay to see what his glucose level was. She said certainly and took his blood. It was actually pretty high for him at 173 and I could tell he was panicked. She said it was all good because it just needed to be under 200. I saw the relief immediately when she said that. So she walked me back out and awkwardly said, she was sorry I couldn’t stay and we seemed like nice people. She told me and later David said also detailed to him, how recently there had been a rash of people who would come back with the patient and go in and out of the room with them and keep them talking when they were supposed to relax and be quiet. She said they also would come and question the techs as to how long it was taking and their person had been waiting too long. This is amazing to me because I have been back there 4 times now and never has there been anyone but me and I would never think to interfere. Once again, a few ruin it for the many. She told David later that maybe they would be able to relax that rule again and allow a family member to come back and they just didn’t understand what was going on with people acting in this way. I spent my time in a corner working on writing and just dreading the coming report.
Around 9:15, David met me in the waiting room and we went to the car. I had him a snack ready since he had not eaten and we headed out for home. We decided to stop for an early lunch when we got closer to home. On the way, of course we got the report.
PET Skull base to Thigh
Multiple hypermetabolic hepatic metastasis have increased in size and number compared to prior. Clear enough. The liver tumors have increased in size and number. Today’s scan was compared to the last regular PET (without Dotatate) from 9/23/2023 so we knew about most of these. We are not sure right now how many are actually new since July. Today’s PET was also compared to the CT on 7/10/24. What we do know is they are still growing. This is discouraging and not what we wanted but it is not surprising since there has been no other treatment since the three were ablated. It would basically take a miracle at this point to stop the growth without any intervention. We are not opposed to accepting one of those miracle things.
Hypermetabolic left upper lobe pulmonary nodule is suspicious for metastasis. This is the lung nodule that appeared on the May scan and is suspicious as we knew but when I look back at the scans, it appears to be the same size. Today’s report does not mention a current size on this nodule.
There is a new 3 mm pulmonary nodule within the inferior left lower lobe and it is suspicious for metastasis. This is a new nodule and small in size. I believe I read once that nodules are considered small if under 9mm. Of course it is suspicious due to the situation we are in. Remembering the lungs are the second place where this type of cancer usually spreads.
Diffuse uptake throughout the bowel can be seen with Metformin use which degrades evaluation of the rectum. On noncontrast images of the rectum demonstrates irregular wall thickening and perirectal fat stranding which may be inflammatory or posttreatment related. They are attributing not being able to interpret the scan around the rectum clearly due to the Metformin effects. This is his diabetes medication and apparently this is common to have this sort of activity. I did read that Metformin causes significant amount of increased FDG uptake in the colon and sometimes to the small intestines. We have not seen this mentioned before and will discuss with Dr. B Monday. This one is also disappointing because we need to know what this *&@$ mothership tumor is doing. And this didn’t tell us much. The wall thickening can mean several things as we first learned at the start of this journey and in this case we know it is malignancy and as I have read as it relates to fat stranding it can also mean a wide array of things depending on the degree of stranding verses the degree of wall thickening. Like the radiologist stated in the report, it could be inflammation or post treatment effects and the inflammation sensation is what David describes with the abdominal pain.
On the bright side, the rest of the scan showed no abnormalities. Vessels: No aneurysm. Adrenal glands: Normal. Kidneys: No focal mass lesion or hydronephrosis. Bladder: Diffuse wall thickening likely secondary to radiation cystitis. Reproductive Organs: No acute findings. GI tract: Colonic diverticulosis without inflammation. Peritoneum: No free fluid. No free air. Lymphadenopathy: None. Soft Tissues: Postsurgical changes of the abdominal wall with low-level uptake favored postsurgical. MUSCULOSKELETAL Bones: No osteolytic or osteoblastic lesion. Extremity Soft Tissues: Normal.
After all of that, we got lunch at El Charo because how can chips, salsa and cheese dip not lighten your mood for a little bit. We picked up our car at the body shop. We unloaded our stuff from the rental and dropped it off as well. We are so happy to have our own car back after three weeks of separation. The rental place secured me a nice replacement for the time, but it makes me nervous driving a vehicle that belongs to someone else.
I am not ready to fall apart, yet, today. I tried to sit here and calmly break down this information in a scientific and realistic way. I went back and forth between scans until my eyes were dry. I know what every single one of them says anyway. We often talk about if it would be better to not see these reports and just have a doctor call you up or see them in the office and they tell you the parts they think are relevant. Maybe we can have too much information, and maybe I spend too much time trying to find the answers to unsolvable situations instead of just being able to trust that what we are being told by multiple doctors and what we are choosing to do is the right thing.
I am tired right now. My mind is racing. I just looked over at David and he is still doing his best Sleepy the Dwarf impression on the couch. It is weirdly strange that I used to stop and watch SL sleep when she was an infant. Sitting very still and holding my breath until those couple of seconds passed, and I could be sure she was breathing by catching the slow almost imperceptible rise and fall of her chest. I do the same with David now.
I think I will just sit here in the quiet with him and just be for awhile.
David’s shirt today: Quirks and Features with Noodle the Dog https://en.wikipedia.org/wiki/Doug_DeMuro David has enjoyed Doug’s car reviews for a long time. He is on YouTube https://www.youtube.com/channel/UCsqjHFMB_JYTaEnf_vmTNqg
