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.
Sunday, February 18
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5 comments:
(((HUGS))) I am so sorry about your cat...This is just the very last thing you need!!! Please let us know when you find him (because you will).
I'll be watching to see what the next scans say.
Oh, honey, I am SOOOO sorry! How terrifying! We had an attempted break-out on Saturday (everyone's back now) and in the time Aslan was missing I thought I was going to lose my mind.
i will definitely pray for your precious one... (and still for you)
any sight of Simone??
I don't know why, but I keep putting comments in, and they aren't showing up. I must seem like an awful friend for not responding quickly.
I have been thinking about you. Did you find Simone? I am sure he will come around soon if you didn't. I hope you are holding up ok. Please call me if you need anything ok? I hope your scans come back ok. I know they will.
Lots of Love.
Gretchen
Dear Sarah,
I do hope you find Simone and your remission firms up in the next days. Your blog has been very helpful to me in its honesty and frustration as it has helped me to prepare for my own adventure. I am on day -41 or so from stem cell transplant for relapsed Hodgkins and my family and my wife have read your blog to understand the vortex we are going into and the hope that we have for the future. Keep your spirits up, we are all rooting for you on the other side of the Adlantic.
Gerry
gerryscancerdiary.blogspot.com
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