First off, I’m not feeling super awesome today as I had chemo yesterday, but I’m managing. And this news needed to be shared TOOT SWEET, so I’m plowing through it because I just gotta get it out there.
PET scan results are in!
And they are….
GREAT! WHEW, big sigh of relief there. Now let’s get into the details. What exactly does great mean? Well I’m gonna lay some technical terms on you because it’s not as simple as saying, “THE CANCER IS ALL GONE!” Trust me, I really tried to get my oncologist to say that…even on tape…and he kept tip toeing around it because he thinks “gone” or “not gone” is too vague for what’s going on here. But pish posh, I’m here to break it down for you all so that we can essentially have some big ol’ warm fuzzies about the fact that it’s BASICALLY gone (shh, don’t tell him I used that vague word).
So happy day! Woohoo!
I just have to finish the three chemo treatments I have left and then I have a final end-of-treatment PET scan a month after my last chemo – so around Christmas or so. At that point he’ll make the final call as to whether I need radiation, but after talking with him later, he personally feels like he doesn’t want to do radiation…based on the results of this PET scan. But we shall see.
What was REALLY said in that conversation.
I don’t have experience with a ton of doctors, but my oncologist likes to be very specific and sometimes uses technical terms that go over my head. However, he’s great at stopping to explain those technical terms if I don’t get it. But since there was such good news with this talk, I decided to record our conversation and then I transcribed it so you could see exactly what was said. Am I breaking some HIPAA laws? Well, maybe. But it’s my personal health information I’m choosing to share, so it’s not a big deal. Plus, there’s nothing in this transcription that I would find embarrassing or TOO personal. That stuff I left out or quit recording when we got to that stuff.
But I thought some of you might find the conversation interesting, because you do kind of have to dig for the good nuggets. That’s just how doctors talk sometimes. To be honest, It was kind of an anticlimactic conversation until the end when I was like, “so this is good news, right?” and then him and the nurses and my sister laughed at me like, “YES, that’s what he’s been saying!” (Yeah, but in super technical terms). Anyway, you’ll see.
Dr. Shah: Your PET ct looks better.
Dr. Shah: Yep. Things are moving in the right direction. So, we’re looking at it for a couple different things. Right? From a lymphoma standpoint the activity level has decreased.
Dr. Shah: Okay. So, the hypermetabolic activity in that focal area is now done to 2.5 and it was 5 before.
Dr. Shah: Okay? So, the activity level is coming down and 2.5 is sort of baseline. There’s some activity of everything in our body. So remember there is a scoring system for Hodgkin’s Lymphoma?
Dr. Shah: And you’re at Doval 3 which means remission. Okay?
Me: Uh huh.
Dr. Shah: There’s doval 1 and 2…and basically those just tell you the level of activity compared to the liver…which is used as a baseline. So you are less than the liver. And the liver is a basic take of what your body is, so this is good.
Dr. Shah: This means that you are having an ongoing response. There’s no other areas of activity that they commented on. Okay? The other thing that they talk about, so remember we had also seen those lung changes at the bottom of your lung from the pnemonia, but weren’t sure if it was the bleomyacin toxicity?
Dr. Shah: That is all improved as well.
Dr. Shah: Okay? Maybe it was because the Pnemonia is treated, maybe it was because the bleomyacin is gone, they [pathologists] sort of questioned it, “Was the patient’s bleomyacin held?”
Dr. Shah: And so, we did hold it and things are better so I’d like to just continue, because your PET ct looks better, I would just continue to hold it at this point rather than risk any toxicity.
Me: I would prefer that as well.
Dr. Shah: Other than that I’m trying to make sure nothing else is in here, nothing else meaningful [looking at the pathologist’s report], so um, I would say that we just finish up your treatments now.
Me: So…Okay, cause I don’t have a visual right in front of me, is it like…the last PET ct scan showed just like this tiny little dot, is that still there?
Dr. Shah: There’s still a tiny little dot, but it’s not active anymore.
Me: It’s not active.
Dr. Shah: Mmmhmmm
Me: Okay, so does that mean it looks like the scar tissue now?
Dr. Shah: Right, so what it becomes…just remember this stuff doesn’t always disappear right away, it could take months and months to disappear, until your body has cleared it out, but it may be scar tissue.
Dr. Shah: um, but at this point, ongoing, things are getting better on each scan, there’s nothing to do other than finish.
Me: Yeah. Okay.
Dr. Shah: And then if that next scan looks stable or better, we’ll just follow you.
Me: So, at this point can you say the cancer is all gone? Or no?
Dr. Shah: It looks like it’s all gone, but I mean remember…
Me: Sorry, I’m just like trying to dumb down everything you’re saying so it’s in terms I can understand.
Dr. Shah: What I would say is, that the activity level is less than the liver. Okay? And that’s how we score it for Hodgkin’s Lymphoma. So, using words like “gone” or “not gone” are very vague, and are very hard to say, and I would say you’re having an ongoing response…
Dr. Shah: And we’re going to get an end of treatment PET ct, and as long as that looks the same or better, we’re just going to place you on observation and then time will be the only way to know definitively if you’re cured.
Dr. Shah: But overall, things are moving in the right direction.
Me: Okay. Cause I was kind of freaking out the last few weeks, because I feel like I have started to notice more of like a dull sensation under my armpit and in my back and I wasn’t sure if that was related to just feeling congested and maybe my lymph nodes are acting up because of it or what, but it was kind of freaking me out a little bit.
Dr. Shah: Right, um.
Me: But nothing is coming up here [motions to the pathology report they’re looking at]
Dr. Shah: No they didn’t comment on any other areas.
Me: Alright, okay. Very cool.
Me: Alright. Alright! Well that sounds like good news.
Dr Shah: YES! No, this is VERY good news. [People laughing at me] No seriously, this is looking better than the last, so the bleomycin stuff is better, and the activity level of that remaining spot is getting better.
Dr. Shah: So, there’s nothing else to do. We finish your chemo. We get an end of treatment scan.
Me: So you don’t think there’s any need for radiation at this point?
Dr. Shah: I will make that decision based on your end of treatment scan.
Here is the side by side visual of what I looked like at my last PET scan (on the left) vs. what is visible now on Wednesday’s PET scan (on the right).
Here is a picture of my lungs, specifically where I had a large tumor in the upper lobe of my left lung. Top is before, bottom is after. It’s still kind of there, but there’s no activity and it looks a lot more like the scar tissue shown next to it now.
At the end of treatment, I’ll show you all of the pet scans so you can see the full progression. This one wasn’t as big of a transformation as the last one, but pretty monunmental in the fact that there is now “NO ACTIVITY.” WOOHOO!
Other silly pics from yesterday and today
Jake had an all-employee meeting that he couldn’t get out of so my oldest sister volunteered to come with me to chemo. She also had Non-Hodgkin’s lymphoma and writes about her life over on Joy beyond the Cross, if you’re interested.
This was me after I got the good news from yesterday. I mean, I’m about embarrassing myself with a happy dance, but that just seems a bit cruel in a waiting room full of cancer patients. So I restrained myself to a happy face.
Today, sitting here in front of the fire, tippity tapping out this blog. Also, this is the first time since we’ve lived here that we’ve had a REAL fire going. BIG thanks to our in-laws who gave us a gas-burning fireplace as a present for our anniversary (it was previously a real wood burning fire, but we’re not about that upkeep)! And thanks to Jake’s uncle for installing it! Anyway, it’s so cozy feeling, this time of year. THANK YOU!!!
Alright, now it’s time take it easy for the next couple days.