Tuesday, August 29, 2006

Grrr. Color me frustrated. My infection continues to improve, but far too slowly -- so my chemo start date has been pushed back again.

Honestly, I suppose I'm not in any hurry, but with the doctor talking about how I have a specific type of tumor that's known as aggresive and fast growing, it's annoying to now have chemo put back by almost a month.

Anyway, the new start day is Sept 14th. Mark your calendars. (Joke.)

In non-cancer news, we're still working on the house. Brie's ending up doing way more than her share, as I get tired frequently, and take long breaks. If anyone's up for some painting, feel free to come on by; we'll be working on it Thurs, Fri, Sat and Mon. (We're going to let the primer dry Sun, and maybe take in a movie.)

And, today was my First Day of School! Today was mostly just boring orientation and assignments -- tomorrow is my first day at my assigned school: Aki Kurose Middle School in South Seattle. We have three weeks of observation in our assigned schools before our classes at the U of W start in late Sept., and I'm really looking forward to it.

More, anon.

Wednesday, August 23, 2006

Onward!

I'm feeling much better today. My left breast is still quite swollen, but the redness has lessened, and my fever is gone. The new stronger antibiotics are definitely starting to work. Yay! (If Breasts weren't considered Naughty Bits, I would post a picture.)

Also, I got the results back from my Mugu (that name still cracks me up), and they were very good. Apparently, normal heart function is squeezing anywhere from 50% to 75% of your blood out of your heart with each heartbeat. My result was 72%, making me very high normal.

Other than that, I'm a little down. Getting so sick Monday meant yet another day off of work, and money issues are really starting to weigh me down. I was supposed to make enough at this job to get me through my first couple of quarters of grad school, but I've missed a lot of work. Grad school itself is expensive, but worse, it's almost impossible to work while I'm going, so I'm going to be living off of savings for a long time, and frankly, my savings aren't all that big. And our awesome insurance is running out in November. We'll have new insurance immediately, so I'm not worried that way, but the new insurance will have co-pays for everything, and since there already have been days when I've seen multiple doctors and had multiple drugs prescribed, those copays really add up.

We cut back our expenses as soon as I got lay off last year, and cut back again when I decided I was going to grad school. We're painting the house ourselves instead of having it done. I think we're being careful enough. But I worry.

Hmmpt. I need to start writing on this blog when I'm a little more cheerful! Okay, moving on: Next doctor visit - Thursday, with my Primary Care Doc. She's great, and I'm going to try to talk her into referals for everything under the sun: podiatrist for my sore feet, massage therapy for my potential lymphedema, naturopath and/or acupuncturist for chemo side effects. Cross your fingers.

Still to do: Call the Critical Trials facilitator and make a final decision about which trials I'm interested in. Call chemo coordinator, and see if my continued infection will affect my chemo start date (currently set for August 31st).

Onward!

Monday, August 21, 2006

So, when they say 101, they mean it. . .

Brie here: I've offered to do some of these updates for Herself. Partially because I have the greater interest in keeping folks updated through the blog so that you don't all have to call and get personal updates. Always lovely to hear your voices, of course, but there are so many calls, I'm not getting any work done! Who knew we were so loved?

Anyway, it's Monday. Another day, another set of problems. The infection Sandy attempted to ignore all weekend continued to sap her energy. She'd intended to stop by the surgical clinic this morning before her MUGU, but life and the clock conspired against her. So after her MUGU, she learned it would be an hour and a half before the clinic folk could tend to her (turns out they have other patients, too - we'd begun to think of them as our private attendants). She bailed. Her drain wound had begun seeping while she was having the MUGU, so she stuffed her bra with a wad of gauze and set off to catch a bus to work. (Note: This is probably the only time in her life that Sandy has ever stuffed her bra.)

Alas, at each bus stop along the way, she found herself having more and more trouble staying upright. She says she started looking at the concrete, thinking "That would be nice." And if she couldn't handle a bus stop, she realized she should probably go home instead of to work.

To get a full sense of her day up to this point, you should know that she left the house at 10:15 and returned at 3:00 - and all she'd checked off her list was the MUGU. I quickly saw how miserable she was and convinced her to return to the surgical clinic. The six block walk was too much for her, so I drove us.

Sandy still felt foolish for going in - thought she was being wimpy. I had a nice round of "told you so" when the nurse and surgeon both not only said she was right to come in today, but that we should have gone to the emergency room over the weekend. Her breast looks horrible -red, swollen, angry - and she's been in pain for days. Yep, when they said she should go to urgent care if her temp hit 101, they meant it. She hit 101 a couple of times on Saturday and then again at 2:00 this morning, but each time she convinced me that she just needed a nap. Yeah, right.

So they poked a needle in and drew out liquid to see if she had an abscess. The first bit of good news we've had in a while was that there is no apparent abscess. Just lots more seroma. So productive is our Sandy.

They prescribed a more powerful antibiotic, to be administered by IV, and since it was 4:45 by this time and they were closing up shop, they sent us to Urgent Care to have that done. I drove home to get Sandy fresh clothes ('nuff said) and something to read while waiting. By the time we'd waited, met with the nurse, gotten the IV in her arm, gotten the antibiotic drip (there was some delay in mixing it, apparently), and gotten her tanked up, it was 7:00. Another day given to the medical process. But we do hope this will make a difference with her infection, because it's been gross and scary.

Sandy sees her surgeon tomorrow for the already-scheduled post-surgery consult. She'll get at least another dose of high-powered antibiotics by IV, and then we'll see what they want to do. But mainly, she needs to get this infection cured so that she's comfortable, less cranky, less tired, and able to get well enough for them to begin the rounds of poison in a few weeks. That's got to be one of the weirdest motivations for getting well that I've ever known. But that's what we're saying - got to get well so you can start chemo.

And for everyone who's been asking - at the very earliest, she'll start chemo on the 31st. But we suspect this infection has pushed that date out further. And she has been wanting to participate in a clinical trial. Turns out that requires a full dental exam within the last six months -- and they want you to have no dental work a month before chemo. She last had a dental exam sometime in 2005, so we're not sure what's going to give, there. Stay tuned to this blog for all the gruesome details.

What's a Mugu?

It's a rather bizarre heart test. Or maybe it's just the prep that's bizarre: they take some of your blood out, take the iron out of that blood, put radio-isotopes into that blood, then put the blood back into you.

Then they just take lots and lots of pictures of your heart, using the radioisotopes to get prettier images. Which wouldn't be so bad except that each set of pictures takes six or seven minutes, you're in a darkened quiet room, and apparently, if you fall asleep and then jerk awake in the middle, they have to start that set over - ahem, I did that a few times.

This test gives them a baseline reading of my heart's ability to squeeze, so they'll know that it's strong enough to handle chemo - and later, so they'll know whether the chemo hurt it. Oh joy.

How was your weekend?

My unbelievable trivial re-excision just continues to be fun -- now I've developed cellulitis. Everything around there (and I'm talking, area the size of a basketball) is red and swollen -- in fact the breast that had the lumpectomy is now swollen much larger than the untouched breast. Weird. And did I mention painful? They've ordered me more vicodin, but I have to be pretty miserable to put up with the fuzziness, plus I'm not sure vicodin is as effective keeping my temp down, and when it gets to 101, Brie always starts to worry.

Busy weekend to be sick -- a bunch of friends volunteered to spend hours in the hot sun both days, helping us scrape and sand the house. We also paid Allison and Collin to come help. It was enormously sweet to have people offer to help us out like that - but it also meant, with the best will in the world, it was impossible to give my arm any rest, as I needed to be up, answering questions and letting people know what needed to be done next. So I was uplifted by my friends' kindness, and exhausted at the same time.

I'm upstairs, and the camera is downstairs, but maybe tomorrow I'll post a picture of the house. It's pretty well scraped, which means it looks its worst -- and all we have to do now is sand, wash, prime and paint. No problem!

Thursday, August 17, 2006

generic pre-chemo whining

I'm beginning to think I need a parttime scheduler for my life, and I haven't even started chemo. I have 8 appointments coming up between surgery followups, and pre-chemo tests (like a mugu - some sort of heart scan. What the heck?), and they're getting hard to keep track of. I'm still working full-time until August 29th, when I start going to school full-time, which isn't helping.

Today was a wash, though. My drain completely broke down last night, and by this morning, my arm and underarm were all swollen and hot. We all thought they'd just have to stick a needle in and take out the fluid again -- but this time it apparently isn't seroma, it's infection, so instead I just got the world's biggest bandage to keep it from dribbling down my side, a new antibiotic prescription, and permission to go back home and go to sleep for many hours.

On the one hand, this could be good -- chemo can't be started until 2 weeks after my drain is out, so now I should be able to schedule my first time for August 31st. On the other hand, hot, tired, sore, miserable...and afraid that once the infection starts to wane, that I'll go back to needing to be drained. @#$$%#$ lymphedema.

Originally written Aug 12th, 2006

So, my surgery Friday could not have been easier or more trivial. They used twilight instead of general anesthetic, I recovered almost immediately, and I actually walked part way home afterwards - I could have made it the whole way but Brie wouldn't let me.

I checked in at 7:30, went to surgery just after 9:00, and was in recovery by 10:00. In fact, we were home by 11:30.

On the other hand, I'm still completely bleeping miserable, because I have a terrible cold and a fever.

And on yet another hand, they put in another drain under my arm, since I'm still having lymphedema from the first surgery (I've had to go in and have the area needle- drained 3-4 times a week). The tubing on the drain is about2 feet long, and at the end, there's a soft oblong reservoir that is constantly getting clogged. I suspect this one won't last much longer than the last one.

Originally written Aug 6th, 2006

Verne's party was a hoot! It was great to see everyone, and we even got to play with Abigail a little. But ultimately it was exhausting, and we didn't get home until after midnight. And I fear I'm coming down with a cold. . .

Originally written Aug 3rd

Finally the rest of the pathology report. The tumors are not estrogen or progesterone receptive. Nor do I have the her-2/neu marker. But apparently my Ki67 index is high, indicating rapid/aggressive tumor growth. So, apparently I need to have the most aggressive kind of chemo. Joy.

In other news, have you noticed that the candy bars of our childhoods have been undergoing weird changes recently? Everything has come out in a new version: crunchier, or creamier, or white-chocolate or whatever. Well, as part of my new plan to eat my way through breast cancer, I tried the new "Chocolate-covered Payday" today. Yum. Someone asked me if it wasn't just a Baby Ruth bar, but trust me, no. BabyRuth is a very messy candy bar -- both the chocolate and the nuts are always flaking off with every bite. Payday? Dense. Rich. Not going anywhere except my mouth.

Originally written July 26th, 2006

Today is turning out to be a pustulant boil of crap. My surgery drain failed, and they had to suck 300 ccs of blood and nastiness out from under my arm. Gives me an excuse to stay home and rest for a day, which may be just as well, since I'm so pissed off I want to spit at the world. [Bleep]ing state Supreme Court anyway.

I also just got my pathology report back. And wouldn't you know it, they missed a little, apparently, and they'll need to go back in. [Damn, damn, damn.]I won't know exactly what that means until Monday's appointment, but among other things, it delays the beginning of chemo. Apparently these bozos don't realize my insurance ends November 18th**, and they need to stop messing around.


**Not that I won't have insurance after the 18th -- I just won't have the great, awesome insurance I currently have; instead I'll have the sort of insurance that you copay $20 everytime you see someone, which isn't fun when you realize I've seen a nurse or doc every day this week.

Originally written July 19th, 2006

My surgery is Friday morning, bright and early. It is considered minor surgery, a lumpectomy and axillary dissection (lymph node removal) and I'll probably be home by Friday night. Thursday afternoon -- a week from tomorrow -- I should have the pathology report from the surgery, and that's when the fun really begins. They'll hopefully be able to tell if it's fast or slow growing, whether it's got estrogen receptors, strange heritable problems, you name it. At that point, I meet my oncologist -- I'm planning to hold out for someone at *least* as cute as Dr Wilson (from the tv show House) -- and find out my radiation and chemo schedule. So, yeah, there'll be another update then. For now, you know what I know.

Originally written July 6th, 2006

While I've been dealing with kitty trauma these last couple of weeks, I've also been immersed in my own little drama: I found a lump, and went through the standard exam -> referral -> mammogram -> biopsy to reach diagnosis... which turned out to be stage two breast cancer.

Ouch. Could be worse, of course. I'm supposed to decide by tomorrow between lumpectomy+radiation+chemo and mastectomy+chemo, which I'm finding hard to do.

I'm leaning towards the mastectomy; that way there's no chance of reexision, and I might not have to have radiation, but I'm afraid that without breasts to balance out my tummy, that I'll spend the rest of my life looking like I've swallowed a pumpkin. I'm afraid of being ninety, and having children ask me if I'm pregnant. (And yeah, vanity much, at a time like this? Sheesh.)

originally written June 30th, '06

Had my very first breast biopsy today. V. weird. The lumps are so small they had to do ultrasound at the same time, so I got a guy on one side pressing down hard with the ultrasound wand (to hold the bumps in place), and a babe on the other side doing the stabbing. Multiple stabs per lump, so I at least have some faith in their eventual diagnosis. Whole thing wasn't too bad except when they stabbed one place they hadn't used Lidocaine first -- that hurt like a mother, and kept hurting until I whined and they did something about it.

I'll find out the results on Wednesday when I see the surgeon (Brie asked, why do you have to see the surgeon -- won't that be a waste of time if you're okay? But I have learned with GH, why ask why?), so cross your fingers for me.