Can You Believe It?

We're still waiting. My appointment on Friday was cancelled at the last minute (family emergency) and now I'm scheduled to go in on Monday morning.

Urgh!

Warning, this is a post full of complaining:

So the waiting continues. I'm getting a little calmer - I mean, if things were really bad they'd figure out how to get me in faster, right? I did get a call from the receptionist for my radiation oncologist (after I emailed and left her a voicemail). I'm scheduled for my "consultation" on Friday afternoon (if you were just going to schedule me for this anyway, couldn't I have gotten this call Friday?). Now you all don't know this, but I was supposed to fly back East to celebrate my mom's 70th birthday on Friday night. So I tried to wiggle out of the Friday appointment- could they see me any other time? The response was that the doctor only sees patients on Monday and Friday and since she's all booked on Monday I'd have to wait until the following Friday. Urgh, I don't want to wait another whole week. The thing that irritates me the most about this is that I know how it's going to go. I'm going to spend 45 minutes waiting for her, we're going to talk through the proposed treatment option/s and that's it (all things that we could do over the phone). Maybe I'm wrong, maybe there will be some neurological evaluation...

In a last ditch effort to get someplace, I sent my radiation oncologist another email. I told her the story about the trip back East and asked if there was some other way to do the consultation. I feel like I'm being a big pain in the arse, but if she'd just called me after the first email (last Thursday) we wouldn't need to do this at all. I haven't heard back from her anyway.

OK, enough bitching. Despite all this crap I'm feeling pretty good. Yes, I have headaches, some of which are probably the result of tumors, some are probably the result of stress. Either way, a couple of Advil keep them at bay (as does a good soak in the bathtub). I am headed out to walk the dog on this beautiful February day (we need rain, but I can't help but enjoy this warm sunny weather!).

Not So Good.

Well, the results are in and it isn't great news. There is an area of enhancement (cancer) growing in the same area as before and there is a new spot on the surface in the front left side of my brain. The results were preliminary (I love that my oncologist just calls right away - even if it is bad news, I'd rather know than be in the dark) but from the sound of it these are small spots. I am officially off the trial again (good - no puking, shitting and sleeping day and night; bad - no cancer killing).

I don't know what's next. I'm waiting to hear from my radiation oncologist. She'll take a look at the scans herself and come up with a plan. I'm hoping they're small enough that we can just blast them with targeted radiation, but we'll just see. As usual, I hate the waiting around and wish my radiation oncologist was more like my medical oncologist. I like them both, but I don't get quick responses from my radiation oncologist- things are much more plodding when dealing with folks in that department (no sense of urgency).

In the mean time, since I'm feeling good, I took advantage and got both cats to the vet, took the dog to the dog park, went to Costco to pick up a couple things and am in the middle of doing laundry and a little cooking. Keeping busy helps keep my mind off the crappy news and uncertainty. I'll feel better once I have a plan of attack!

Weekend Away

Things are motoring along here. Last round went ok, same as before, puking, shitting and fatigue. I don't remember being so tired last time around, don't know what that's about, but it is crazy! I've complained about being tired before, but it just doesn't compare. It is on my list of things to talk about with my doctor.

Keith and I (and Red) are just back from a lovely little weekend up in Marshall, CA. We rented a cute little cottage on a ridge overlooking Tomales Bay. It was a beautiful spot nestled amongst cypress trees with great views of the water. We left Friday evening when Keith got home from work (I was done early Friday and had an appointment for yet another CT Scan - I don't really understand why I needed another so soon... it has something to do with the trial, but at least I'm not anxious about the results). We stopped in Sausalito for dinner. It isn't really on the way, but our favorite fish restaurant is there... We pulled up to the cottage before 9pm and I promptly jumped into the hot tub and had a little soak under the stars.

Saturday we did a little hiking along the coast, had a great lunch in Point Reyes Station (Keith had a conserved tuna salad that was AMAZING - next time I get too much tuna to eat in one meal (Costco) I'll have to try making it), went back to the cottage took a nap and a soak and took a drive at sunset over the hills to explore Petaluma. This morning we got up and took Red for some ball play at the beach before we headed back home.

I've got to head in to UCSF for a blood draw and a doctor's appointment on Tuesday, then a brain MRI on Wednesday and then back on Tykerb on Thursday. I'm nervous about the brain MRI! Please cross all fingers and toes that things look clear!!

Can't Biopsy it if They Can't Find it!

So, I made it to work yesterday and then hustled off after my last class to have an ultrasound guided biopsy, a blood draw and a CT Scan. All these things were for the trial (all participants have them done on the same day of the same cycle). They don't do much for me, but they're important in the big scheme of things.

The department in charge of mammograms, ultrasounds and breast biopsies at UCSF is always a cluster fuck. I dont' know why I was surprised to wait almost two hours before the ultrasound was started. After a LOT of ultrasounding (not at all painful for those who haven't had any experience) it was declared that they couldn't find anything in the region they identified in November. They managed to find one tiny spot in the original area and took a core biopsy of that area. This biopsy experience wasn't anywhere near as traumatizing as the one I had the first time. More evidence that getting yourself to a big teaching hospital is a good thing.


So, that's the big news, they can't see much of anything on the ultrasound!! That and the fact that I've made it through this most recent round without any big incidents. I've made a decision that I just can't work on days 2 & 5 of treatment (which happens to be Friday and Monday). I just get too tired to be of much use at work (plus there is the nausea and vomiting thing - I really don't want to puke in front of one of my classes!).

Double Whammy

On day two of my last round of Tykerb I noticed I had a fever. Nothing crazy high, but definitely a fever. I called the doctor, she said continue with Tykerb but add an antibiotic in case of infection. This became the perfect storm of sickness for me. I puked my guts out over and over and couldn't (and didn't want) to eat or drink. After a couple of days of no eating or drinking I was in bad shape- light headed, fatigued beyond belief, etc. After another call to the doctor, she tells me to skip my last dose of Tykerb and she got me an appointment to go in for fluids on Tuesday. I headed in for fluids and I still had a fever. The nurse called my doctor and they decided to do blood cultures to make sure I don't have some weird bacterial infection. On Wednesday I was still feeling ridiculously fatigued (I needed a nap after walking Red around the block - I usually walk him 3 miles) and emailed the doctor. She emailed back (at 11pm?!?) to say my blood cultures were negative and I probably had a virus. So, long story short, I've been home from work all week, napping, learning how to eat again (it was tricky at first - no joke, but now I'm back to my old self!) and trying to get back into shape. I still have a low fever off and on, but my fatigue is getting better (I managed 2 miles worth of dog walks today and a trip to the grocery store).

I'm scheduled to go in and see my doctor on Tuesday morning to get the all clear to start up round 3 next Thursday. I'm going to eat healthy and rest up in an effort to get back into fighting shape as fast as possible!!

It Is Amazing How Responsive You Are...

Went in for my checkup before the next round, and after some poking and a review of her notes from two weeks ago my oncologist says, "it's amazing how responsive you are". The skin is less red and the tumor seems to have shrunk measurably. This is after round one!! This is especially heartening because my body has "seen" Tykerb before and you'd expect whatever cancer that was left to be relatively resistant to the Tykerb (it survived it before...). Not much else to report. My EKG was normal and my blood work wasn't back yet (I'll get a call if there's a problem).

Back to work tomorrow and back on the sauce on Thursday. Wish me luck trying to work during this next round...