Simone's home! Scans disappointing.

Simone is home!!! We got him back night before last, and I can't even begin to explain how relieved and happy I am! He did not find us, we found him. He was down the street from us, and a neighbor called with another "Simone Sighting," only this time we actually saw him! The poor guy was completely traumatized and tried to run away from us. He'd been lurking around where I'd been calling his name and walking around looking for him, a fact which bewildered me but the vet said was not uncommon when a cat is traumatized. We cornered him behind a grill under the plastic cover, and it ended up being a sort of violent capture, with him obviously terrified and peeing all over himself, Lorraine getting rather badly bitten, and me getting scratched. We spent the evening at Immediate Care and then I took him to the vet yesterday. He's a bit banged up (he had to get the last vestiges of a screwed up claw removed under anesthesia) and has been sneezing nonstop from having been out in the rain and sub-freezing temperatures. He was dehydrated, but that has passed. We're giving him antibiotics and painkillers. The poor sweetie has clearly been through the ringer and needs to reacclimate to our home. He's sleeping SO much (I'm sure to catch up) and he just wants to be on top of or next to me. He seems pretty freaked out and jumps at any sudden movements or loud or jarring noises.

What a gift to get him home! If we hadn't been relentless in our search, we wouldn't have gotten him back. He was separated from our home by construction and a big, barking, loose dog....so I'm not sure he would have made it back. His nails were all almost down to the quick and shredded, so it looks like he was either trapped somewhere or maybe tried to climb our wooden fence to get back in. At any rate, my baby's back home!! He was gone for 7 days and it felt like a lifetime.

The scans: the latest is that the abdominal CT showed enlarged nodes in my abdomen. The thing is, those nodes (increased to about 1 cm to 1.5 cm) don't line up with the nodes of the CT portion of the PET/CT that lit up, nor does the PET portion showing nodes line up with either CT. Wacky.

I spoke to my beloved onc a little while ago, and he doesn't think this is cancer. I agree with him but of course am still a bit freaked out and would have preferred to get good news instead. He believes that it's inflammation and scarring from the transplant, and says that when inflammation is present after receiving intensive chemotherapy, it frequently presents in the abdomen. I don't have any B symptoms, and my disease at the time of relapse was present only around my clavicle, not anywhere in my abdomen. I asked about the high SUV of the PET (ranging 4.1 to a high 10.2) and he said that even at the 10.2 it could be caused by inflammation.

He gave me 3 options:

1. Get a CT-guided biopsy, but because of the location and depth of this node, they'd have to go through my liver, which would present risk.

2. Get the node surgically removed, involving cutting open my stomach and cutting/moving around my organs to get it out.

3. Wait until my already scheduled scans in April and see what they show.

I'm going with the third option. 2 months isn't going to cost me my life if it is cancer, and really the only thing I'll lose is sleep.

He said that he has another patient that experienced this same thing, only they did biopsy that guy's abdominal node and it showed only inflammation.

So I'm in watch and wait until April. It sure as hell would have been nice to get good news, but I'm just going to have to cling to the knowledge that ICE got me into remission going into my SCT and reduced my tumor by more than half, and that radiation reduced it by half again, so it's now down to about 1.5 cm, which is certainly scar tissue, since nothing at all lit up there. I am just going to have to continue to tell myself that this is residual inflammation. In a way, I wish we'd waited until the 6-month point before scanning at all -- hindsight being 20/20, that is.

Lorraine wants to know what we do if it IS cancer. I can't answer that. I can only concentrate on maintaining hope that it's not.

So there's my update! I have the gift of a returned Simone and a little uncertainty with my scans....but all in all I feel well and truly blessed. I know that the next scans will show that these recent funky scans result from inflammation and scarring. To think anything else is madness.

Unclean Scans and My Cat's Gone Missing!

Hello all. On Friday I was supposed to get the results of my post-SCT scan. My oncologist moved up the appt. to Wednesday, Valentine's Day, and he delivered news that we weren't expecting. He does think I'm still in remission, but my PET/CT showed multiple nodes with an SUV of up to 10.5 in my abdomen. The PET slides don't line up with the CT slides in a situation the radiologists calls "misregistration." (That link refers to cardiac misregistration, but in my case it was in the abdomen. See, I had a regular CT of my neck, the site of my relapse. Then I had a full body PET/CT combo, and that's where the disconnect lies. Because of Classical Hodgkin's Disease's orderly and predictable progression from neck to abdomen, it seems unlikely that this is cancer, but we can't say I'm in remission until we see something to refute that scan. My onc thinks my abdomen is lighting up because of residual inflammation from my SCT, as that was the area that took the hardest hit. That really does make a lot more sense than having new cancer develop in a place it hadn't been before and skipping the normal steps of neck and chest before hitting abdomen. Oh well, the CT will tell more, because we will be able to compare the size of my nodes there to the previous scan, without trying to determine activity. So this Tuesday I'll have an abdominal CT, and if that gives continued cause for concern, then I'll have a biopsy of an abdominal node.

So we left trying to be positive about all of it, tried to enjoy a romantic meal for Valentine's Day, and when we got home we realized that my cat of 13 years (my original cat and the keeper of my heart) had somehow gotten out that morning and was missing. All of our animals are inside animals, and we are maniacal about the doors, but somehow that morning one of us messed up. Simone is ALWAYS intensely curious about the outdoors and has been a runner in the past, but never for more than say 10 yards before I got him back in and tried to scare the bejeezus out of him. We have a fenced yard, but we found one of our birdfeeders on the ground and the hook that it had been hanging from bent way down, so that's how he got over the 6 foot fence.

Anyway, we've been searching high and low in our development ever since. It's like looking for a needle in a haystack though, because there are at least 1,000 homes in neighborhoods all built around a very large and winding golf course....so if he crossed one hole, he could be in a completely different neighborhood very far from our house if he took to the streets. Also, 30% of the development is made up of trees and woods -- a fact we used to love. We've put up hundreds of fliers on mailboxes, we've borrowed golf carts daily and ridden the course (strategically) looking for him, and we've spent at least 10 hours a day driving around, walking around, entering homes under construction, and just calling and calling. Lorraine and I are both hoarse and exhausted, and I've been crying since Wednesday night. I swear, this is so much worse than either of my diagnoses, and I'd have another transplant in a MINUTE if I could just get him back. There have been a few sightings in areas quite far from one another, so we race to where they've said they've seen him and either it's another black cat or we can't find any cat at all. Overnight it's been about 15 degrees, and during the day it's in the 30's, so it's COLD! It is supposed to warm up to the 40's and maybe low 50's, so that's good news. I am just devastated; I've had Simone since he was a 12-week old kitten, he predates Lorraine by like 5 years, and he is my SON. I'm just heartbroken.

I guess the good news is that I'm so desperate over Simone that I haven't had time to worry about my uncertain remission and upcoming scan.

Please pray for my Simone, friends. I'm heartsick without him.