Downs and Ups and Done.

Diposting oleh good reading on Jumat, 16 Maret 2012

Well a lot has happened this week. We had a really nice and needed visit from my mom. She drove me to my radiation appointments at UCSF most days. It gave Keith a break (to actually get some work done at work) and meant I didn't need to take public transit (which I don't mind, but a car ride is usually faster if traffic isn't terrible).

Over the weekend, I came to the realization that between the fatigue from radiation and the fact that I'm deaf in my left ear (more on that later), I can't do a good job of teaching anymore. It was an incredibly hard decision. I love teaching. I got a lot of joy and pride from teaching, but it was time. I have taught through the last two years of treatments and I think it worked out pretty well (thanks in large part to an amazing substitute-really, "substitute" doesn't do him justice). I came to the realization that enough is too much. I'm worried about what I'm going to do to keep myself occupied, but we'll see. For now I'll keep it simple... I'll be doing some napping, cooking up yummy dinners and going for some dog walks (which will be more pleasant if it'll stop raining for more than 5 minutes at a time!).

The only wrinkle in not working is the paperwork that goes along with it. I'm feeling pretty lucky that back in 2007 when I was signing up for a flex spending account the guy suggested I get disability insurance. It cost me less than $50/month and now it means that money won't be too much of an issue. It does mean some hoops to jump through of course. The folks at school have been great helping with their part and I think the paperwork from my oncologist is pretty well sorted, so that just leaves the part that I have to fill out. Fingers crossed that I get it all tied up neatly and the insurance company doesn't see any problems!

On Tuesday I had an appointment with my oncologist. I really just needed to talk about what my situation is as she sees it. I was in a pretty dark place (too much "doctor google" does a girl wrong!). In her usual thoughtful and frank way my oncologist explained that this crap in my brain is most likely going to be my undoing, but there are options out there. First of all she expects me to get a rally from this latest radiation treatment. Second, once we know if the radiation worked or not there are a couple of clinical trials that target brain mets that I may be eligible for. Big sigh of relief, there are still options (read: I'm not completely fucked yet. well...I'm pretty fucked, but you get what I'm saying).

The ear is still a problem that I haven't gotten sorted out. It's insane that I'm still waiting to get in to see someone. I'm second guessing my decision to go to UCSF for an ENT. Here's what was explained to me today...it boggles the mind: My oncologist (at UCSF) sent a referral two weeks ago today. My case was given to doctor A to review. Unfortunately doctor A was out all of last week, so it took a week for him to take a look and decide he didn't want the case. He passed it along to doctor B who also passed on the case, and passed it along to a nurse practitoner. So right now my case is being reviewed by the nurse practitioner! According to the receptionist, I should get a call to make an appointment by the middle of next week. What a cluster fuck. In talking about this with my radiation oncologist, she shares my frustration, but pointed out that what this means is that the doctors didn't see my case as something that needed emergent care. I guess there is something to feel good about in there, but holy crap I'm pissy. I may end up just calling the ENT that my GP here in Oakland recommended and giving up on the UCSF ENT.

Finally, it's Friday and I have had my last of the 14 radiation treatments. Woo Hoo! Before treatment we sat down with the radiation oncologist. She gave me directions on how to wean off the steroids. Hopefully it goes smoothly!! I'll go back in and see her for a "check up" in a month or so. Then she'll get me another brain MRI in 2 months (I was thinking it'd be sooner). Of course if I have symptoms in between they'll scan sooner, but if I'm doing ok, then they'll wait. She reiterated that if things crop up, depending on the shape and location, there may be the option of targeted radiation therapy.... so again there are options.

So, what's next? Rest and relax for a couple weeks, then I'll go back on some targeted therapy. No clinical trial and no chemo for now. The plan is for me to go back on Herceptin (an infusion every 3 weeks with essentially no side effects) and the regular dose of Tykerb (this shouldn't be too bad, the regular dose is 1/3 of what I was getting when I was on the trial). I'll do that until my next brain MRI (or some other shit hits the fan!). Once we find out if the radiation worked then there'll be some more decisions.

Keep all fingers and toes crossed that the radiation killed off the cancer and cleaned up my brain!

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