I’m not a radiologist

The official reading of the PET scan was not quite as good as my version. They are calling it PR (partial response), not CR (complete response). I think it’s MR (mostly response), but that’s not a real thing.

So, where do we go from here... the Johns Hopkins doctor returned my oncologists call while I’m was in the room, so I got to hear the whole conversation on speaker phone. And, it was more of the same nebulous stuff. He keeps using the expression “data free zone,” which the data geek in my totally wants to own.  But, after some discussion, the doctors decided to give me one more round of chemo. It really could have gone either way, but since cycle 2 was only half a cycle, they seemed to lean toward going one more. So one more it is. Dammit. I wanted to be done! I hate the mustard gas.

And I told him that he won the radiation battle. I told him basically the same thing I said below, including accepting that I’ll be taken out by a stroke someday. Hopefully a long time from now, but it is what it is. You’d think an oncologist would be a realist about death, but he seemed really bothered by that statement. It’s not like I’m going out and doing me will, upping life insurance (ha! As if I could get it!), etc. Just matter of fact that the odds are not in my favor.

On a happy note, we are going to Sedona next week! Yay for mid-chemo vacations!

Oh, and the insurance stuff... they paid for everything except the two expensive chemo drugs ($45k and $13k). Those two need more documentation before they’ll pay. Joy. But everyone is on it, and I just wait.

Oncology wins

I’ve mentioned a few times I am really hesitant on radiation. My last ditch effort to avoid it was to see an onco-cardiologist. That is, a cardiologist with extra training in the effects of cancer treatment on the heart. It was a really good appointment, and he wants to dig into the stroke thing a bit more. He said he wished we were doing this 5 months ago, but at least he still wants to try to figure out why. So that’s good, because everyone else just shrugs. But he ended the appointment with the exact same words I’ve heard from 3 oncologists: “I think radiation is your best shot at a cure.” And he doesn’t think I should forgo it. So I’m resigning myself to being taken out by a heart attack or stroke someday. Hopefully 20 or 30 years from now, but it’ll probably be what does it.

On the good side, I had a PET scan this week. I don’t have the report yet, but being the impatient science geek that I am, I’ve already looked at the scan images, since they give me a CD of them. I’m not a radiologist, but I know enough to know that the big blob that was in the middle of my chest is not there now. Yay! And I see my oncologist tomorrow. So only another 24 hours til I get the good news officially. 

And I’m having all sorts of insurance issues. They haven’t paid for any chemo yet, and it bills at $78,000 per cycle. Well, technically, they have approved one claim, sometime yesterday. The EOB hasn’t posted yet, but they only paid about $600 of $65,000. That’s some really fancy insurance magic there. But, I am feeling somewhat less stressed after seeing approved next to a claim. Just have 4 more that need to show up.

No news is good news

What with how the world of social media has changed over the past 15 years, this doesn’t get as much attention. Sorry for those who use this as their only check.

Last week was uneventful. But, I want you to picture a photograph from WWI or WWII. A soldier, in a hospital bed, with a vacant stare on this face. Mustard gas attacks often left people with horrible facial burns, and blindness, but I’m thinking some of that was the systematic affects. Because that is how I feel for almost a week afterward. I can literally lay there and stare into space for hours. TV is too much, Twitter is too much. It’s Zombie Hope! But it usually passes in about a week. So by now, I’m pretty functional.

I think I have about 1/3 of the hair I had 3 months ago, which was already about 20% less than I had 3 years ago. The latter was apparently just “female pattern balding.” Boo! The former is obviously chemo. But this combo has “infrequent” alopecia, with published reports in the 5-15% range. Yay outlier. Again.

I have a PET scan on Thursday to see how well it’s worked, and I go see my doctor on Monday to discuss next steps. If it’s clear, I know he thinks radiation is the next step. For a bazillion reasons, I’m still hesitant. I’m going to see a cardio-oncologist on Friday to discuss how bad it would be for me to get radiation. Hopefully he’ll back me up with with a no, or else reassure me in his yes. To be honest, (another) stroke or a heart attack scares me more than cancer. Those are just so random, and can strike you down without warning. No thank you.

So the, what to do next. I had some thoughts, but they have now been tempered after seeing how much my insurance is balking at my current treatment. It bills at $78,000 a cycles, which means I’ve rung up a a bill of about $230k, and they haven’t paid anything so far. It’s going back and forth, and they haven’t denied it. Yet. I’m afraid that is where it’s going for a bunch of reasons. Partially because they did not show any preauthorization on file, and partially because I do not meet their stated approval criteria. Good times! I’m trying to wait until there is a decision before I panic.

On that note, I’ve decides to postpone my next cycle. It was questionable anyway, depending on the response seen on the PET. But I’m going to go on vacation instead! Last time, I took a mid-chemo vacation and came back with a fiancé. This time, I’m thinking that’s out of the question (seeing as how I’m still married to him). But we shall see. Oh, and we are splurging on a trip the Antelope Canyon. It’s always been on my “someday” list, so someday is here!

Success!

The premed cocktail worked! I slept through the brentuximab without much reaction. I say much bc toward the end, I had a bit of restless legs, but that was it. I woke up just as she was putting on the 10 minute infusion for the bendamustine. We are calling that success. And it’s now 15 hours later and no fever. Last time it spiked around midnight (based on when I got chills, not verified til morning). I also found the good seat today. There was a working nurse call button, and a flamingo bobble in the window. That, plus my palm tree blanket/towel and I was happy.

And I’m going to get another PET in 2 weeks. Studies show the combo gets a complete remission in 2-3 cycles for most people. So, please let me be most. I haven’t been most very much recently, but hopefully this time. My oncologist is out of the country for 2 weeks, so that’s why I’m putting off the scan. I don’t want to wait too long for the results, but if he isn’t around to pass them on to me, I’ll be on edge. And then we have to decide what to do next. If anything. I have thoughts. He usually goes with my thoughts, when they are rational/reasonable.

So back tomorrow (or today since I’m up late, thanks extra steroids) for another quick round of bendamustine. They leave my iv in over night because it’s easier (and safer) than re-poking me tomorrow.

Round 3 coming up

I got my hair cut. Again. Back in May I chopped about 5 inches off and dyed some of it purple, it was my don’t get too attached statement. That was the day after my diagnosis.  The we went with this “easier” and “milder” cocktail. The one that has landed me in the hospital. And it wasn’t supposed to cause hair loss. Like <10%. Well, once again I get to be an outlier. Or at least several stdev from the norm.

That’s a lot of scalp showing. So I took off another 3 inches yesterday. More because the shedding was annoying me. The long hairs were falling, and they would stick to my clothes and tickle my skin. So annoying. So now they are shorter. Still falling, but less of each one. 

In other news, I have confirmed that my doctor doesn’t want to treat another fever as an immune reaction. So if it happens again, back to the ER I go. I was really hoping we could just assume it was the same thing, but no... so hopefully the premeds work well. I really don’t want to do that again. 

Itchy itchy itchy

So I saw my oncologist today. We mostly talked about the crazy infusion reaction last time. Suffice to say, he is changing the premeds. Adding some prednisone the night before and right before, and a little Pepcid as an H2 blocker. That one was on my request based on some research I did with other patients on the Facebook group with a bunch of patients. Closest thing to a support group I’ve got.

I also learned he is 3 years older than me, which apparently makes me still young. GenX FTW! Ahhhh, oncology. Where I can still be young and losing weight is bad! It’s the little things. But hey, I didn’t get any weight comments this time.

The bad news, I don’t have an answer as to how many cycles we are doing. I guess some depends on how my body deals with this next round. But, we did briefly discuss and he said “I’ll get back to you on that,” while he discusses with some other folks. I suspect the answer will be 3 or 4. So maybe only one more! Then we get to discuss radiation again. And I’ve discussed my feelings on that before (which way to roll the dice?  Gamble on not getting hodgkins for a third time or gamble on not getting something worse...)

And back to the title line. I am so, so itchy! I had to cut my nails to keep from damaging myself. Listed in the side effects, but in the less common list. I blame the mouse antibodies. And little tiny blisters all over my feet and ankles. Good times! At least I’m so pale you can’t see them, so I’m not scary looking, like when I had the rash all over my legs. Shown below for your amusement. Or mine to creep you out.