We spent yesterday at Mayo and those are long, long days. We took some time last night to kind of process it all. I cried in the room with his team, he asked them how he should feel at the end of the appointment because it wasn’t clear when they gave us the results.
I think being in surgery, I expect words like “clear margins” or no evidence of disease (NED). We didn’t get either one of those and will be headed back in 8 weeks for another PET scan… we *think*. His case is being presented to the tumor board later this week so we will get a final plan.
His deauville score decreased again to 3 from his last scan which was a 4. “Technically” a deauville score of 3 means he’s in remission as a Primary B-cell Lymphoma patient. When you look at the PET, you can still see the mass, but it doesn’t light up the way it did when we started down this road. This is morbid and maybe weird but all I can think of is that it’s like a dead animal in there that’s slowly being eaten and absorbed by his body. It takes time for that process to happen. Sorry if that grosses anyone who reads this out, but that’s how my brain is thinking of it.
I also learned that LDH is the marker for this lymphoma, it’s nonspecific but it’s one tool they use. I do wish they gave me ALL the criteria and markers they look at. The weird part is that his was never crazy high.. but I’m grateful to have the ability to draw labs whenever I want :-) I’ll be trending his numbers for sure.
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Here’s from Greg:
So we have a "technical" full remission.
This means that we can still see tumor in the PET scan, but it is only dead tissue as far as the doctors and machines can tell. It can take up to 6 months for this tissue to reabsorb.
We have another PET scan scheduled for 8 weeks out just to make sure that everything keeps moving in the right direction.
The Dr was very positive and indicated that I should live my life as a full remission patient.
All good news! Just not the "poof" perfectly bill of health that would have totally relieved my and Andrea's anxiety.
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His clot in his IJ is gone and they gave him the choice to stop the blood thinner or not. So, he stopped his Eliquis which means he can go back to his full workouts in a few weeks. That means his alarms at 9a and 9p will no longer go off. That means hopefully when he scratches his body he won’t bleed or wake up with bloody noses anymore.
We’re SO grateful to be here. Today Eamon shared with a friend that she can come to our house and play anytime cause it’s safe to do that now. Feels like we just might be on the road back to some normalcy. He’s on the schedule to coach in May. IN MAY! How the heck!? This husband of mine is truly strong mentally and physically.. he’s so much stronger than I ever knew. I don’t tell him enough, I’m so proud of how he’s handled everything that’s been throw at him. Not just with this process, but with everything so close to home. He’s handled it all. It’s going to be fun to watch him come back ❤️
We said goodbye to Greg’s mom yesterday and acknowledged she probably wouldn’t be back for awhile. So many transitions to happen. He sent me a grocery list of things to pick up the other night. These small interactions seemed so meaningless before, but mean so much now… Eamon struggled to fall asleep last night as I was snuggling Taryn. I was frustrated he kept waking her and Greg was able to come and talk him through it all .. helped him manage his emotions and fall asleep. He’s such a good dad it’s fun to see that him be there for those important moments. Those moments when I need that partner to be calm and gentle when I’m frustrated.
Thanks for being on this journey with us. I probably won’t write much until our next scan. They said this will probably be the worst experience of his life… I hope so. Grateful to be here on this side of things.. finally.
