where it's at

Well, I've had a good week. I'm now a week out from my last radiation treatment and I'm almost completely weaned off the steroids. So far, the wean has gone smoothly. My head feels funny and I have some brief headaches, but nothing I'm too worried about.

So far I'm enjoying the whole not working thing. My mornings are more relaxed. I get up, have breakfast (and my 'roids), take the dog for a walk and do my project of the day. Red (the dog) and I are clocking between 3 and 4 miles a day. Being on steroids for so long has had some side effects. I have a giant moon face (no wrinkles!), sleeping is sometimes a challenge and there is some loss of muscle in my thighs. The thigh muscle thing is actually pretty crazy. My thighs have totally lost muscle tone. I can still walk just fine, but stairs are hard (dragging groceries up the stairs at our Whole Foods is ridiculous!). So, long story short, Red and I are doing hills and stairs to try to keep in some kind of shape. Tuesday we went up to the top of Mountain View cemetary and today we went up to upper Rockridge and walked up (and down) a bunch of the stair paths up there. The views are just amazing!

I have managed to stay pretty busy really. A lot got done this week; our taxes are finished, my disability paperwork is filed, most of our house got a serious cleaning, my school work is up to date, I had some nice visits with friends and I made some yummy food. I just have to say: I made a red lentil and cauliflower curry from Veganomicon that was outstanding! It's easy and really really yummy! Vegans and meaties will like it!

In other news, I finally have an appointment for a hearing test and the ENT nurse practitioner. Of course, they aren't for a week and a half from now, but I HAVE AN APPOINTMENT (I was referred to the ENT on March 2nd and my appointment is on April 4th). I'm really curious to "hear" what she thinks is going on, but really I'm just hoping there is something to be done about my hearing loss.

My sudden departure from work has resulted in a lot of really sweet emails from students and colleagues alike. Some are so touching- I just don't have words to express how much they mean to me. I always new I loved teaching, but until something like this happens you never really think about it. Teachers rarely hear how they impact their students and this event really inspired kids to tell me. In the end I think what I take away from it is that I got really lucky. I found a career that I love and that I worked hard to do well. Teaching isn't easy- to do a decent job you work HARD, but it can be great fun and incredibly rewarding (and incredibly frustrating... but, a hell of a lot of fun). While I'm comfortable with my decision to stop, I definitely miss going to work everyday. There wasn't a day teaching that someone didn't give me a great laugh!

Downs and Ups and Done.

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!

Hair Cut and Moon Face

My hair hasn't started falling out, but it is inevitable so for the third time in 2 years Keith shaved my head. I hate to say it is an improvement, but my hairdo was INSANE anyway so this isn't too bad (just a little chilly). The bigger drag than the hair is my puffy moon face. It is a side effect of the steroids, but wowza I'm looking pretty funny. It's getting crazy. There isn't anything to be done and I've managed to wean down to 8 mg (down from 16 when this all started a couple weeks ago). The facial puffiness probably won't go down until I get all the way off. I know it is a stupid thing to complain about given all the other crap to complain about, but ugh.

I have decided to take this week off work. It's just too hard to teach right now since I can't hear a thing out of my left ear. My right ear works so I can function in most situations, but a classroom isn't one of them. I'm lucky to have an amazing sub ready to step in, so there isn't too much stress there. I just need to get in to see a doctor to get my ear checked out. After getting a referral over a week ago, I'm still waiting for my case to be evaluated by a doctor (who was out of town last week). I can't believe how long it takes, but at the same time I want to be seen by someone at UCSF (just for some continuity) and I don't know what they'll even do for me before I finish radiation anyway... Still, I HATE waiting (and being deaf!).

Other than the ear thing, I'm managing pretty well. I've gotten a bit more sleep since I've dropped down the steroid dosage. I'm still walking the dog 2-4 miles a day. I'm doing a lot of vegging out in front of the TV (boring my mom to DEATH!) and surfing the web (anyone want to play words with friends - let me know!).

One Foot in Front of the Other

I'm half way done with my 14 treatments today. It isn't as easy as it seemed in the fall, but we're putting one foot in front of the other and it is getting done. Being on steroids is tough, but I'm not ready to wean off any further yet. I'm struggling with some pretty severe hearing loss in my left ear. The radiation oncologist thought it must be something simple, but my GP says no. At this point we're figuring it must be swelling from the cancer/irritation from the radiation and I'm waiting (not very patiently) for a referral to an ENT. At this point I'm less worried about the why and more interested in just getting some kind of a fix. Teaching is rough when you can't hear well!

One really nice thing is that my mom is out for a week or so to help out. My radiation oncologist told me she'd rather I not be driving myself into the city everyday (she admitted that she was being very conservative given that I've never had any seizure activity, but better safe than sorry). So having mom here to tote me back and forth to treatment for a bit will give Keith a break!

I'm taking all prayers and good thoughts that this round of rads really kicks some cancer ass! I'm managing fine right now, but this has been one hell of a set back.

Three Done!

So I'm done with round three. Things are going along ok. A couple of changes though. The plan has changed again, I'll be getting 14 doses of radiation. The idea is to give a lower dose each day to try to avoid some of the negative side effects without forgoing cancer killing. The last two doses will be a little different because they'll carve out a spot so as not to radiate my brainstem (was radiated before and is important for basic function - breathing, etc). The other change is the doctor says she'd rather I not be driving to the city every day. She said she's being very conservative, but better safe than sorry (it'd be bad for me to have a seizure driving to or from the radiation appointments!).

So far I'm feeling ok, things are weird mostly because of the steroids. They make it impossible to get a good night's sleep. My doctor told me that I'm taking about 20x more adrenaline than my body would normally be making each day. I'm weaning off the steroids already, so hopefully that'll get better. For now, I'm physically tired, but just can't see to get more than an hour or two of sleep. I'm hoping to drop the dose a little more this weekend and maybe I'll be able to SLEEP!!

Round One Done

Well I guess this is more like round one, take two, but you know what I mean. I got in on time (actually a little early!), got a scan done and then the rads. It was quick and easy. I got scheduled for the rest of the week (and it fits my work schedule - a relief). I am glad to get started and cautiously hopeful that it will work this time.

And Now We Have a Plan

We're back from seeing the radiation oncologist and we've got a plan. It isn't what we were expecting (gamma knife). I'm going to start getting whole brain radiation (wbr) tomorrow. From the sound of it, the cancer isn't growing in clumps, but in sheets, so it doesn't lend itself to gamma knife. Having wbr after having the partial brain radiation I had in November isn't ideal, but it is the best option (according to the doctor). There is a chance of damage to my cerebellum (since it will be getting radiated again). The cerebellum controls balance and coordination, so we'll just see how that goes. Radiating the front of my brain may leave me with some short term memory issues, but since I'm in good shape now she doesn't seem overly worried that I'll have serious issues (just things like forgetting my keys - and I do that already!). I'm not excited at the prospect of having to go and get radiated every day for 10 days (not including weekends), but I am relieved that it can get started quickly and my doctor expects my symptoms (headaches) should ease after just a couple of treatments.

Having a plan is good. I know I'll get radiation for the next two weeks or so and then I'll wait 6-8 weeks before I get another brain scan. Here's hoping this time it really works!!