Friday, October 31, 2008

And then I dropped the ipod in the loo.

So I started the chemo Thursday, and I was fine (tho jittery as all get out) until the last 10 minutes of treatment - then the big wave of nausea crashed. It's the first time that I couldn't sleep during the treatment, but I was wired to the gills, so I listened to music and wiggled the whole six hours. It was pretty awful, actually. Kevin went off to work, and next time I'm going to have friends tag team, so at least I have someone to talk to. Some of the time I was so wiggley I could only listen to half a song. The play list ended up pretty weird - something with a strong beat helped, and I think that banjos and drums affect a different part of the brain than other instruments - so lots of bang-jos and drums. If you want to make me a mix cd, I would be grateful.

I confess I wasn't expecting the chemo to hit me quite this hard, this early. Didn't sleep much on Thursday night, and still jumping out of my skin. I talked to the on-call doc on Friday, and he said it could be a reaction to the steroid (good!) rather than the chemo drugs themselves. This is hopeful, because I can probably cut out the steroid - can't very well cut out the chemo drugs themselves.

I did muster up the energy to take Tess out halloween shopping on Friday. They had a teacher service day (PT conferences next week) so they got Halloween off. How cool is that? So we went to Ross Dress for Less, which I've decided is my new favorite Halloween store. Tess went as an evil rock star - with this fabulous glitzy tango dress - and her first real pair of high heels. She's right on that magic edge between kid and teenager, and has wonderful qualities of both - not to mention that when she and Georgia and all the rest are sixteen they are going to stop traffic. Are these kids unusually beautiful, or am I biased?

I didn't actually really drop the ipod in the loo, I just came close. I was listening to music on the ipod; IV in my arm. Sometimes switching to the laptop for a different music mix - Kevin uses the ipod more, so it's mostly his music; and a BP cuff on the OTHER arm because they were monitoring a problem with one of the drugs. So in order to go the restroom, it was a fairly big ordeal. Remove the BP cuff, unwrap the blankets, get my shoes back on, disconnect from the computer, unplug the chemo pump, and then wheel it across the room. I just put the ipod on top of the pump, rather than spending more time untangling yet another wire. And sure enough, when I got into the restroom, the little bugger tried HARD to leap into the toilet. I caught it, thank goodness.

Thursday, October 30, 2008

Tuesday, October 28, 2008

Gastlycrumb tinies

So it's about what we feared - a recurrence in seven lymph nodes.
From the look of it, it's the same cancer as before, creeping back.

At this point, there are not good odds for a cure, so we are starting
to think of it as a chronic disease instead of a cureable one.
There's always a small chance of a cure - the "long tail" in the
statistics, but it's unlikely. (For those of you that like numbers,
let me know, and I'll tell you what I know, and point you to the
studies I've already read.)

I start chemo again soon, possibly this week, certainly next. I'm
having a new port put in a week from today, so I don't have to be
stuck with their little needles every week. This regimen will be
Taxol and Avastin. Taxol has all the usual caveats, hair loss,
nausea, blah de blah. Avastin is a monoclonal antibody (aren't I
fauncy) that targets the blood vessels to starve tumors. It's the hot
and fancy new treatment, and increases the response rate considerably.

As for how you all can help - I'm doing okay, other than the waking upat 3 am bidness, which is a pain. The support people are currently more in need of support than I am - send Tess your love, and give Kevin the opportunity to vent, or preferably go out and kick things and strangle small animals.

Lots of love,

Saturday, October 25, 2008

[Insert ugly emoticon here]

The preliminary biopsy results are "consistent with a metastatic
recurrence of breast cancer". As of the moment, that's pretty much all we know - I got this from an on-call doc whom I don't know, not from any of the regular doctors. I go in to talk with my oncologist on Monday, and then will have a much better idea of what the next line of treatment is, and whether it's possible to cure it, or only to
control it.

I'm doing OK, the wert and the imp are having a harder time. I haven't used the word "metastatic" with the imp yet, but she does know that the breast cancer has come back.

I'm glad I nagged my doctor to take a second look at the lymph nodes....

Friday, October 10, 2008

PET scan

"PET scan? What, are they looking for,
little cats and dogs inside you?
What fresh hell is this?

- wertperch

I had a PET scan on Wednesday morning, Oct. 8. The technical explanation, above, covers the imaging process - this is the more personal version.

The PET scan started out about 24 hours before the scan itself - I was not supposed to exercise. That meant I missed my Tuesday morning dance class - major bummer. But even 24 hours after exercising hard, muscles are still uptaking glucose, so it can obscure the scan.

It also requires fasting for 6 hours beforehand, which I don't really mind, since I often skip breakfast. What it did mean, though, is that I couldn't have my usual Yorkshire tea, and arrived at the doctor's offices with a raging caffeine headache. I seriously considered cheating, and told the nurse with all the pokey pokey. She laughed, and said that actually, they've tested it, and that caffeine increases the glucose uptake, and it can, indeed, obscure the test. Glad I didn't cheat.

Injection of the radioactive glucose, and a command that I was not even allowed to READ for the next hour - so the muscles holding up the book wouldn't steal the glucose. Who knew? But along with a fairly hefty dose of Valium, I did what any stressed-out, worried, former cancer patient would do - I fell asleep in the chair for an hour.

Then they helped me stagger in to the PET machine, where I lay for 45 minutes while the machine buzzed and whirred. The only uncomfortable part is that I had to hold my arms up over my head the whole time - I didn't know it was possible to get muscle cramps in your shoulders.

Then, thank the [Powers That Be], they let me go, and wertperch walked me down the street to the local coffee and tea shop. Food! Strong. Black. Assam. It had to be one of the top three cups of tea I've had in my entire life.


My doctor called me in the early afternoon.

Although I don't know a lot of the details, apparently there are seven locations that showed up as "hot spots" on the scan - two behind my right collarbone (the ones I was nagging the docs about in the first place), two in my right chest wall, and three along my mediastinum - adjacent to the trachea, apparently. Given the pattern, it's very unlikely that it's not a recurrence of the previous breast cancer.

I will know much more when I speak with my oncologist, this afternoon. From what I read, this is a regional recurrence - the next layer of lymph nodes out from the original cancer site.

Good things - if it is contained within the lymph nodes, it's a better prognosis than if they are new tumors. The fact that it's within the lymph nodes means my immune system is still fighting the cancer, and in addition that the cancer has not invaded any other organs. Breast cancer is most likely to go next to the brain, bones, liver and other abdominal soft tissue, and lungs. The fact that there is no evidence of any additional metabolic activity in any of those is a good sign.

Also, the fact that the CA-15-3 numbers are not up means that it's not invaded my bloodstream, so thus another indicator that it's contained within the lymph nodes.

Down side - wertperch and the imp are distraught.

I'm fairly philosophical about the whole thing. I'm VERY glad I bullied my docs into taking a second look at that beastly lymph node above my collarbone - proves my intuition is more accurate than their biopsies. (So there!)

The upside of having done the treatment before is that I know what to expect - although the treatment is brutal, I survived, I recovered, and was back to pretty much full health, barring the odd shoulder stiffness and reflux. I've also been getting more exercise, and the tougher I am going into it, the better the results usually are. Can you say, "durable"? And I even still have my own axe and teeth!

So I will add an update to this sometime over the weekend. Sometimes it takes me a few days to process all the medical gobbledygook, and then we'll all know what we are in store for. (For what we are in store?) - We'll all know what to expect.

Love to all,