Tuesday, January 12, 2016

The wind is still blowing

Remember how I said I'd post again once I knew which way the wind was blowing? Well... I don't actually know which way it's going yet, but it is kicking up a storm, so here's an update.

I saw Dr. H this morning. He advised that he had talked to Texas about treatment plans, but said she didn't really recommend anything specific, that it was a lot of, "You could do this, or you could do that." He came out of the conversation confused and frustrated, because he was expecting direction, and all he heard were options. He asked if that's how she'd been with me, too.

I relayed that she had been a little bit like that with me, but it was because I had a total freakout on her when she suggested that it was time to go back to the Doxirubicin (Adrimycin, "red devil" - all the same diff) regimen. She knew I'd had a bad experience with that drug, but didn't realized that it would cause me to have a high-speed-come-apart, just talking about going back on that chemo. (Cancer treatment PTSD. It's a real thing, people. ... And I hope you never have to know what I'm talking about, because it is hell on wheels.) But I just can't even think about going on that drug again without knowing that I've exhausted every other possible avenue. So, as I told Homsi today, that is when she started sort of thinking out loud with what options I had (keep doing what I've been doing, maybe try the Trabectedin... but only if I could get access to it in Arizona). We talked, long-term, about how she'd change the way the delivered the hard chemo, to see if she could decrease the likelihood of the mucositis happening again. (Look up that word if you're feeling real brave. Then know that mine was so bad that I was landed in bed for weeks, unable to move, because the sores and swelling lining my entire digestive tract was so bad that I couldn't even roll over in bed without searing pain. And don't even get me started on having to poop...)

The point being, when Zarzour initially talked to me, she had a recommended treatment option (on no level did I think she was up in the air or all over the place), until she realized that just talking about her recommended treatment plan was enough to send me to an early, anxiety-induced, grave. And that's when she gave me options.

I explained this to Homsi, which I think (I hope) helped him feel better about Zarzour not having been specific in her conversation with him. He asked me what I wanted to do. I told him that I had thought about it and would prefer doing another two rounds of the Gemcitabine/Docetaxel over going straight to the Trabectadin, with the thought process that it would either show stabilization in my next round OR it wouldn't, and that would prove that it doesn't work for me and I could effectively cross that chemo combo off my list of possibilities.

Homsi wasn't... in love with this idea. He's quite certain that the tumor growth has been over the last six weeks (read: not in the two weeks between the scan and starting chemo), and that doing another round of the same thing would not be a wise use of time. Not that he thinks I'm dying RIGHT NOW and time is of the essence or anything. Quite the contrary, both he and Zarzour have said that I'm actually pretty stable in the progression of the disease and now is the time to try to lighter/easier chemos. Homsi went so far as to say today that there is so much gray in my case, that it's hard to treat, because there is no one obvious course of action that has to be taken right now.

That said, he recommended a possible fourth treatment option. Staying with the Gemcitabine as a binder, but adding Dacarbazine (getting rid of the Docetaxel). It would be a 14 day cycle, instead of 21. So, the cycles would be shorter (this is both good and bad), but it would be going in for chemo just once every 14 days instead of twice in a 21 day cycle. He's given this combination to many patients (and gave me some medical journals as light reading as support), and has seen success with his own patients. I asked if he'd seen success with liposarcoma in particular, and he told me he hadn't used it on liposarcoma yet, but assured me that he had seen success with other soft tissue sarcoma patients.

So... now we have a fourth option in the running. I need a day or two to think about it (and I would like Texas to give me some input). As much as I'm happy to hear that there's another drug that has seen success with with sarcoma patients... I'd really like to hear that someone has had personal experience with treating a liposarcoma patient before I sign up for this.

Hopefully, I'll hear back from Zarzour soon (like, maybe she'll call from home tonight, or first thing tomorrow morning? ... when I dream, I dream big), so I can get another medical voice chiming in.

I am grateful for the time off chemo. I'm really tired, but I'm thinking more clearly and I have less pain now that I don't have current chemo in my system, causing swelling and shooting pains in my extremities. At the same time, every day I go without getting back on a treatment plan is a day that there isn't anything that's even maybe holding these damn tumors at bay, and that's making me a little bit crazy. I know that I can only control what I can control, and doing research and reading up on another chemo is the part I can control. ... It's just that sometimes I wish I didn't have such a weirdie case of what is already a rare cancer. There are no easy cancers, and there is no treatment plan that is a good time, but some days I wish my body had gone the route of 1 million other people, and I had a cancer that was easier to treat. My kingdom for a pat chemotherapy plan, is what I'm saying. I'd love nothing more than to walk into a doctor's office and be handed a standard treatment plan. But alas, that is not to be. I get to wander the CandyLand of Cancer Treatments; right now, I am bogged down in the Molasses Swamp, but I'm really hopeful that someday soon (tomorrow, maybe?), I'll get a shortcut pass through Gumdrop Mountain. Only time will tell.

In the meanwhile, at least I have peanut M&M's to stress eat while I remind myself to take deep breaths.


Jenni said...

I'm sorry. I so wish there were easy answers for you.

Crowwyng said...

Why isn't there a Candyland with M&M's on it? And I have lost my Candy Coating a few times in my doc's office too. So here is a hug and understanding.

shana said...

Wow!!! That's a lot to wrap your brain around. Thank goodness for peanut M&M's to help you think more clearly. Ha Ha. :)