the weasel and the hare

Hepatologist calls like 2 hours later and is like “your liver values are better than they have been in months, I was thinking that we could taper to 30mg”

And I’m like well I already took the 35mg…. And she was like “okay that’s fine too let’s do 35mg for a week”

🫩 I can’t win I didn’t know 10mg taper was an option cause you were so hung up about the extra 2 days of it before. But she said maybe next week we could lower to 25mg so I’m gonna actually wait for her to call before I take it even tho I kinda have this schedule that I’m supposed to take meds on (pred with breakfast than an hour later mycophenolate on empty stomach?)

BUT I’m finally getting chemo this Friday I’m cleared for that. And it’s been so long and I’m honestly now just scared and of course I seen 500000 TikTok’s about how doxorubicin is the most awful evil thing ever and idk if they’re doing a lower dose or not of it but I’m scared and I feel like I woulda been less scared if I had just started immediately after finishing treatment 1.

So I can stop worrying about stage 4 for a little bit longer 👍

The problem is there is no position of relief I can find

My beautiful neck hump that is driving me mad it’s gonna start whispering evils into my ear soon:

Also my prednisone moon face because who even cares who sees me at this point plus I think my bald head being more narrow makes it even more comedic

And then she said because of this whole hepatitis thing they might decide that it’s safer to do my surgery before the next chemo (I didn’t get chemo today cuz they’re scared to give it to me). But she’s gonna rush the plastic surgeon referral to see about that and also I should be getting an MRI next week to see if my cancer is truly gone gone because if it’s gone I guess they can do the surgery and then I’ll still do the chemo once my hepatitis is cleared up but it might be a lower dose I’m not sure. They said they’d also maybe give me a Neulasta shot when they give the chemo if I have it next week.

My epic gains… my onco said it’s mostly fluid weight from the prednisone but I know I have been having unlimited indulgences as well because every time I try to stop myself I’m like “you’re really gonna tell someone with cancer no?” But it definitely did pick up once they put me on prednisone… I’m guessing it’s gonna keep going up for now, once I start A/C chemo it might drop if the nausea gets me on that. This extra poundage might be useless for my breast reconstruction.

-sunscreen

-doctors

Things TikTok health influencers are not scared of:

-buying random “peptide” mixtures online and injecting them

-taking dozens of supplements in unregulated doses from unknown origin all at the same time

I saw the hepatologist yesterday. I’m a big statistics person as a scientist so it kills me to not have a “__% chance of improvement” that the doctor can give me, we just have to play it all by ear and hope my body does what we expect it to do… Right now we are going to do a slower taper on prednisone (I’m on 40mg right now) with the immunosuppressants.. I am gonna get weekly bloodwork (which lately it’s been 2 times a week) and the hepatologist will call and tell me if I can proceed with the taper… it’s gonna be minimum 8 weeks to get off that, then they try to reduce the immunosuppressant and hope that my T Cell response is just burnt out and stays quiet… There’s no indication that I’ll have any permanent damage from this nor a permanent autoimmune hepatitis which was definitely a fear of mine.

The resident that saw me before was so funny she was like “oh there’s a lot going on here, oh there’s a lot of moving parts.” 😭 And I think I need to learn to better explain my chemotherapy’s because when I see specialists they do not know much about cancer (normal and expected). All the regimens are different so even if they know the drugs they probably don’t know the regimen for my rare breast cancer which is fair (it’s reverse order from other cancers). I was good enough to have a little paper schedule of how my prednisone dosing was changing and they were at least able to cross reference that easily to the bloodwork I had done.

Unfortunately we were under the assumption that I could do this immunosuppressant and do my next chemo and it’ll be fine and I am booked on Friday. The hepatologist I think brought this up to the oncologist because I said I’m starting AC Friday though and my onco called today and said she’s going to have to be consulting with pharmacy and some other doctors because turns out it might be safer to not give me chemo until my prednisone dose is 20/25mg (this must be what she’s leaning to now unless consulting brings up something different). So that might mean I have another 3-4 weeks delay before I can start my chemo. I can’t even find a published case study or anything about this stuff. P

I swear at this point if I need another semester off I am not gonna be happy.

But on Tuesday she said she was gonna wait till I see the hepatologist so they can decide if I should go on the immunosuppressant, then Friday night she’s like uhh actually I’m gonna just prescribe it to you now and you can start it Sunday if you want or you can wait till you see them on Tuesday.

Why make me decide these things 😭 I know I’m having a rare response and she’s probably like reading or consulting other people in the off time but like how am I supposed to decide that. I figured it’s pretty likely the liver doctor will want me taking the meds so I do plan on starting on Sunday because I found one single small study saying combined with prednisone it could reduce my ALT by an additional ~30% within 7 days and I’d like to be fit for my next chemo session on Friday.

Thought I lost my squab then I almost filled it with dog probiotics (disclaimer I had ONE accident squab and now I’m hand raising it)