I just got off a video visit with my oncologist. Good news/bad news. The good news is that I'm discontinuing chemo. The bad news is because it didn't work. I've been miserable and the mass actually grew. Next step is to get me on some new drugs. There's a clinical trial right now for a very rare gene that I happen to have. There's a slight chance of surgery, though right now it would be too extensive to even consider probably. So I'm waiting to hear from the clinical trial people right now. He's hoping we can get me on some new drug in the next couple of weeks. I'm hoping that since I'm off the chemo I can start to feel like myself again and the new drug won't have too many side effects.

So, fingers crossed, say a prayer, light a candle, whatever way you send up good thoughts.

Quick update on Toddson: Her hospital care team says she is doing well. And she let me know that she has moved to a rehab center in Bowie, MD. Ping me if you'd like to know which one.

She sounds bright in her messages, and says that both she, and her doctors, are optimistic about her recovery.

I've had to step back from my advocacy role, but I'm sure she will pop in to reconnect when she is able.

My father passed last night.

Hey All, I was emailed a reminder that I haven't checked in in a while (Hi, dcp & Brenda! Thanks for checking up on me!), so here I am. Sorry for being the Lurkiest.

I believe my last update was no more chemo, starting drugs. The clinical trial my oncologist originally wanted to get me in won't accept me because my kidney numbers aren't good enough, but he had a second option ready to go. I started an oral med just over a month ago, paired with an infusion drug that I started on Nov 1. One of the known side effects of the infusion drug is an "acne-like rash" which I got. Good news - the rash tends to be an indicator that the drug is doing what it's supposed to be doing in my body (i.e., teaching the body how to fight the cancer), Bad news - I got such a VERY EXTREME rash that they've pressed pause on the drug until we can get the rash under control. I've met with the dermatologist who specializes in cancer reactions, and the rash is very much improved. But still not good enough to give me another infusion yet. My oncologist assures me that the pause won't hurt anything, the drug is still working in my system. But it's weird - the rash is really a problem, but cancer is a bigger problem, so I want to get back on track.

And IOhealthN, my hemoglobin is very low, so I'm going to get another blood transfusion on Friday (instead of the drug infusion I was originally scheduled for). I was hesitant to get another transfusion (just because everything is already SO MUCH, y'know?), but it should help with some of the fatigue I've been feeling, and apparently being as anemic as I've been is extra stress on the heart so I'm going for it in the hopes of improvement.

As I'd hoped, being off the chemo has really improved how I'm feeling. I'm still not myself, but I feel so much better than I did for a while there, I'm still calling it a win.

I just, like, wrote a thing. But I think it's pretty good, so.... [link]

Copied from Allyson -

I received this email from ita’s sister, Moji.

De: Moji Anderson
Para: Moji Anderson
Asunto: ita, 10 years later!!
Fecha: Viernes 20 de Diciembre de 2024, 9:40 AM
Hold on a minute!!! It's been ten years since ita left us???
Inconceivable!!
Would you join us in remembering her on Saturday, January 4? Remember how in years past we had a share-the-photo thing of us doing our own memorialising? Well now, we could up the ante with a Zoom call if anyone is interested in that? It would be nice to be together and share memories - jokes and scary things (that last one is probably mostly me) and unbelievable stories, things that have happened since she left that she would be totally excited about (TV shows!! Movies!! and er... Supernatural's...developments!!!). And also, it'd be a great opportunity to catch up on everyone's lives! For those not into that, you could do the same thing as years past, where you do something you know she loved, and send on a picture. These are ideas I gave last time:
- anything to do with any martial art (her favourite was krav maga - she also loved capoeira) - you could wear a shirt with a martial art image / actually do a couple forms / punch/kick someone in the face/body / wherever
- anything to do with comics - you could wear clothes with the images / you could read one/some / whatever
- anything to do with TV shows like Supernatural / Community / anything Joss Whedon has ever written
- anything to do with superhero movies
- anything to do with the movie Princess Bride
- eating any delicious dessert (she loved baking sweet things!)
- eating any Jamaican food / drink
- playing / dancing / singing along to anything by Prince / Bob Marley
- do something intellectually challenging (e.g. play Scrabble, do an IQ test)
- read a scifi book
- do some drawing / sketching / photography
- etc...
- and wearing pink and black, her favourite colours
Whatever you do, let's do it again at 4pm Jamaica time, which means...
- 4pm on the East Coast of the US and Canada
- 1pm in LA, Vancouver
- 3pm in New Orleans
- 9pm in London
- 10pm in Stockholm
- 8am Sunday in Australia
ita's LA folks: if you could spread this around a bit for those people I don't know/have info for, that'd be great.
For those interested in Zooming, could you let me know, so I know if it makes sense to set up a call? Love!
--
"We're all fragile. Even the dinosaurs bit it. What can you be in between your beginning and your end, is the question." Sis