Mid-October update: Hair!

We’re about two-thirds of the way through radiation treatments, and it’s time for an update. Exhaustion is the theme of the week.  They said the daily radiation could make you tired.  They were right!  But when tired is the baseline, it’s hard to know if any extra perceived tiredness is because you’ve been having radiation, or you’re still tired from the chemo (which ended in July, for Pete’s sake), or you spent the week getting your 8-year-old’s face stitched back together after some playground exuberance gone wrong, or you stayed up watching an old James Garner movie until 1:30 a.m.  Who knows?

                I am now rocking an impressive radiation burn.  It looks, and feels, pretty much like a sunburn—a bizarrely localized sunburn.  I will have the strangest farmer tan ever. It covers half my chest, half my neck, and one armpit.  The treatment for this is to use one of two possible ointments.  One is greasy, and makes you look funny, like a body builder who has just oiled himself.  The other one feels nice, but smells like compost.  Would you rather look weird or smell weird?  I opted to look weird, because I don’t have to look at myself all day, but I couldn’t live with that smell.  Yes, cancer keeps finding new ways to make me more attractive! (I know, I know, this, too, shall pass.)

                My fingernails are also pretty interesting.  Every one of them has rings like the rings on a big old tree stump.  There are six rings on each nail, one for each chemo treatment. Those were truly badass drugs.

                But there’s good news, too. I have rudimentary hair, though it’s pretty mangy-looking right now, and a lot grayer than I had hoped it would be.  Every day, though, it’s a smidge less pathetic. And I got all excited this morning because I actually had to shave my legs! Yes, if I’m this excited about shaving my legs, I probably need to get out more.

                The best improvement this week has been the return of eyelashes.  English-teacher friends reading this, do you know if anyone has written an ode to the eyelash?  Someone should. I never realized how awesome they are until they went away.  They keep lots of crap out of your eyes, and save you pain and trips to the eye doctor.  They are purty.  They stop you squinting. And they are expressive.  Have you ever tried to flirt with someone without benefit of eyelashes?  It’s just not the same.

Radiation starts

                 People keep asking me when my radiation treatments will start.  That means I’m overdue to update the blog, because the treatments started last week.

                The effect of the radiation is cumulative.  I will eventually have a sunburn-like reaction, but not for a couple of weeks.  They tell you to buy a lotion made from marigolds because they’ve discovered that marigolds produce chemicals that are beneficial for radiation burns. It has a nasty chemical smell.

                They say the radiation might make me tired. Hey, I’m already tired.  But the process is mostly painless.  The first day, it was harder, because I had to maintain a really uncomfortable position for 45 minutes while they took lots of x-rays.  This messed up a tendon in my thumb, of all things. But otherwise it’s been okay.

                The machine they use, a linear accelerator, inspires a weird mix of awe and gratitude and absolute creepiness.  It’s not something that makes a person think, “Yes, I should get naked and lie down in front of that.”  Of course, it is amazing that they can pinpoint-target nuclear energy with such precision.  But it feels wrong, unnatural, to be the target.  You think about the hero firemen who got irradiated at Chernobyl.  You think about the book Hiroshima.  You think about that series they just ran in the New York Times about all the things that can and do go wrong in nuclear medicine.  But now they are drawing on you with blue Sharpies. They have put two real but tiny tattoos on your breastbone and armpit and the therapist lights them up with red laser beams like she was about to unload a smart bomb in your general direction. She hides behind a wall of concrete and lead.

                It’s time-consuming, an hour drive each way, five times a week, but the treatment itself only takes a few minutes. On Tuesdays, it’s longer, because you get to talk to your radiologist.

                She asks if I’m still having any weird side-effects from the chemotherapy—which ended in mid-July.  Yes, the left hand is still kind of numb, the eyes are still messed up, the stomach still has some issues.  She says that, in truth, I probably won’t feel normal until maybe January of next year.  Wow. Not even my oncologist ever admitted that.

                But she says I’ll have some hair by the time we’re done with radiation, in November. And the brain seems to be coming out of the fog a little bit.  All my life, I have drawn and painted.  I haven’t drawn or painted anything since March, because the chemo truly messed up my brain.  I couldn’t think hard enough to actually draw anything.  But I’ve started sketching again.  I hope this means the brain cells are not dead, they’re just stunned.

Fat Tire? Or Flat Tire?

                It’s almost four weeks since my surgery, and an update is overdue.  Sorry for the delay!

                The surgery went well.  No complications so far.  The anesthesiologist was great. I had told him that eight years ago, after my emergency C-section when I had Matthew, I had been horribly nauseous.  Nothing like that that this time, the guy was on top of it.  I spent one night in the hospital, and came home uneventfully.

                It was a bit of a bummer, though, when my surgeon spoke to John after the surgery.  They had removed nine lymph nodes, and they still found cancer cells in six of them. When I spoke with the surgeon two days later, she told me not to worry about this; it was what she had expected and it was something we could deal with using drugs and radiation. However, I didn’t really believe her.  From what I had heard and read, this was news that could actually decrease my life expectancy.  I began to feel like I really was going to die of this, and I began to feel pretty down.

                Happily, I have met with both my surgeon and my oncologist since then, and both of them are pretty optimistic.  My oncologist said it would have of course been better if all the cancer had been wiped out by the chemo, but the chemo did take a big chunk out of it.  The main tumors had greatly shrunk and most of what remained in the lymph nodes was in the process of dying.  That bodes well for our chances of having eliminated any cancer cells wandering through my bloodstream.

                My surgeon said that in my gloomy appraisal of the situation, I had not accounted for the type of cancer I have.  The kind I have is fairly non-aggressive and very dependent on estrogen.  So first we nuke it with radiation, and then I take Tamoxifen for the next several years, and that should handle whatever is left.

                I also have some new lifestyle guidelines.  I am supposed to exercise every day, because this kind of cancer does not like a revved-up metabolism.  I am supposed to limit my alcohol intake, because this kind of cancer responds to metabolized alcohol the way it does to estrogen.  Depending on which of my doctors you ask, that means no more than three or seven drinks a week. Neither the exercise nor the alcohol limits should be too hard for me.

                The doctors differed a little on the question of fat.  Estrogen levels are related to fat.  One of the doctors said that means I should eat a low-fat diet.  The other one said that diet theory has been largely refuted by the science, and that what I should be doing instead is to get to a healthy weight. Either way, this will be the hardest part for me.  I’m about 20 pounds overweight, and most of what I eat is high-fat.  So I am going to be working on this, but it won’t be pretty.

                Anyway, both doctors assured me that my situation is not dire.  They both offered to put me in touch with other women who had very similar illnesses to mine, who are still going strong 20 years later. So I am trying to switch gears from feeling like I am dying, to feeling like I am going to be here for a long time and I had better figure out what to do when I grow up…

                Meanwhile, the plastic surgeon has been happy with the way things are going.  They’ve basically put a water balloon in there, with a metal valve in it.  Every week, they blow the balloon up bigger, until it gets big enough to hold the space while we do several weeks of radiation.  Some time down the road, we remove the water balloon and replace it with a proper implant.  They can’t get make the space any bigger after radiation, so they have to do it now.  This has all been very surreal, to watch them inflate half of my chest like a basketball.

                “Let us know if it deflates suddenly,” they said.  “That’s called ‘a flat tire.’ It’s just saline, so it’s not dangerous, but we have to fix it sooner rather than later.”

                How do you fix it, I asked.

                “We change your tire,” they said.  Duh.

                They also said I am under NO circumstances to have an MRI of any kind on any part of my body.  That would result in a catastrophic tire blowout they said, basically explosively sucking the tire right out of my chest. They didn’t need to tell me that twice.

                I go for my first radiation appointment tomorrow, where they make the custom mask or stencil or whatever they call it.  That takes a while. A shout out to my friends for entertaining Matthew while I am down there in DC!

Katie's blog, post-op edition

                Hi! I had my mastectomy eight days ago, and I’m finally ready to write again. I was in the hospital  for one night, and on some serious painkillers for several days thereafter. The surgery itself seemed to go well as it could.  It was pretty straightforward.  There were no reactions to anesthesia or anything like that.  Of course, I was pretty sore for a while.

                There was the normal amount of hospital-related silliness.  Their pre-op admissions person told us to be there at 6am.  When we got there at 6am, they asked us why we had some so early.  We sat around for a long time. Then they told me, after I had already been to the bathroom, that I had to pee in a cup for a pregnancy test.  Really.  As I hadn’t been allowed to drink anything, including coffee, since the previous day, this was easier said than done and I was grouchy about it. I also told them it was pretty unnecessary, since I’d had my tubes tied eight years earlier and I am also post-menopausal.

                “Humor us,” they said.  We game some thought to having John pee in the cup for me, and debated whether they would even notice, but  eventually I did it, because  pissing off my crack team of cancer doctors is not what I want to do.  But then the nurses forgot to process the cup of pee, so when 10am rolled around and it was time to do surgery, they had to wait while they went off and ran the pregnancy test.  Of course, I still wasn’t pregnant.

                Many, many thanks to Pam, who drove my kids around that morning, and Deepika, who drove them around that afternoon and fed them, and Sarah, who did it the next day!

                So far, I’m hanging in there.  It is still a bit sore, but manageable with just regular old Tylenol. This morning, one of my surgeons told me I could start driving again. Still can’t go to the gym or do much that’s active, but, hey, that includes vacuuming, and I am told I can start with physical therapy probably next week. They will also start inflating my new boob next week, so I hope to look less lopsided then.

                Yesterday, my surgeon sort of took the wind out of my sails with my pathology report.  It was not nearly as good as I had hoped it would be.  Everyone had felt the chemotherapy just went great—and it did.  My plastic surgeon was pleased at how much the tumors had shrunk.  They were able to use all my own skin as a result, that sort of thing.  But I had thought that “successful” chemotherapy would have wiped out the cancer cells in the lymph nodes, and that was not the case. During surgery, they removed nine lymph nodes, and six of them still contained cancer cells.  This is not good, and it sent me into a panic. For a supposedly faithful Christian, I am still totally not wanting to die.

                However, my surgeon says I should not be panicking at all, and that this was pretty much what she had expected to see.  She said it is still “most likely” that we can get a full cure via radiation and tamoxifen, which I began taking yesterday.  I had hoped for a cleaner bill of health than that, but that was probably just inflated expectations on my part.

                A friend of mine who is a medical doctor helped me put it into some perspective.  He said it is disappointing when you think you see the finish line, but then you realize it wasn’t where you thought it was.  Still, that is how a lot of cancer cases work. There is a  great deal of ambiguity, even when things are going relatively well, for the first several years, at least.  I just have to get my head around that.

                It was very helpful talking with him, and with my friend who brought us dinner, and my other friend who brought us another dinner, and my other friend who brought my kid home from day camp yesterday!  You all are keeping me sane and treating me like a queen.  Another example:  we are enjoying fresh HUCKLEBERRIES that two of you sent me from a place in Oregon!  Heavens, they’re tasty!  And expeditious. 

Surgery day after tomorrow

                We are gearing up for my big surgery the day after tomorrow, trying to get all our kids’ schedules aligned and all our ducks in a row.  We owe a lot of thanks to friends who are running here and there to pick up and feed and entertain and comfort our kids this week!  Thanks, guys!

                In the end, I decided to not have surgery on the second breast.  The odds are pretty good it will never develop cancer, and I just don’t feel like any unnecessary medical procedures right now.

                This attitude on my part made for an interesting exchange with my plastic surgeon, when we first met.

                “What is your current bra size?” she asked.

                I told her.

                “What bra size would you like it to be?” she asked.

                I just sat there and looked stupid for a minute. This was not a question I had ever asked myself.  I had never wished my breasts were smaller, or bigger, or more even.  I had become aware, at some point when I was breastfeeding children, that my breasts were not perfectly even.  Well, that is why God made bra straps adjustable, I thought.   Really, until my breasts tried to murder me, I was quite happy with them the way they were.

                Silly me!  When you really measure them and photograph them and take a plumb line to them and think about them like a plastic surgeon does, there’s a lot of aesthetic problems there we could fix.  They aren’t even.  And they’re too big, apparently, or too “generous,” as one of the doctors put it, trying to be nice.  And they’re getting sort of saggy, compared to what they could be.

                Because, it turns out, my boobs and I have Options. We could do an old-fashioned implant.  Or we could take one of my back muscles and fashion a new boob out of it.  Or they could use of my abs.  Or part of my middle-aged gut, and give me a tummy tuck at the same time.  And then, I could have surgery on the other boob, to make it smaller and perkier and match the other one more perfectly.  And when they tattoo the colored parts on there (which they do) I could get a sexy little butterfly or something on there as well.  The girls could be better than they were before…better…stronger…faster.

                But I’m just no fun.  Unless it is going to give me a real chance at living longer, I am not interested in a boob job right now.  Which is just as well, it turns out, since none of those more-complicated plastic surgeries could be done until some months after radiation is finished, anyway.  And I don’t even start radiation until some time in September.  So I have time to think it over. Meanwhile, all they can really do is basic reconstruction, where they implant a sort of inner-tube in there, which they gradually fill, over the course of a few weeks, with saline to make room for whatever we implant in there later. That won’t be for maybe nine months or a year.

                For now, the rest of this cancer management seems to be going well.  It is so good to not be on chemo anymore!  I still feel a little better every day, and I finished chemotherapy a month ago.  I have pretty much got all the feeling back in my fingertips.  My fingernails never fell off.  Most of them did get nasty brown spots that looked like nicotine stains, but even those are fading now.  I did have one big toenail that I kept on with Band-Aids for some time, but it is also doing better. I have some nasty scars on my arm, from a PIC line and another Taxotere burn, but they are beginning to fade some. I am still bald and my eyes are still tearing all the time, but those problems should start coming right soon.

                I did have a scare about a week and a half ago, when the person at Sibley who was giving me my pre-op physical found what she described as a “growth” in my right eye. I hadn’t known it was there, inside my lower eyelid, but darned if she wasn’t right.  A really ugly-looking thing, too, and she said I should have my doctor look at it since we don’t want to mess with our vision, do we?

                I certainly don’t.  I am a painter, among other things, and messing with our vision would certainly play hob with that, or with driving kids around town. But even worse, when you say “a growth” to a person with breast cancer, that person immediately jumps to the conclusion that there’s been a metastasis and she now has breast cancer in her eye, and is going to die.

                Fortunately, after I left there and panicked for about a half an hour, I called my oncologist.  One of his wonder nurses called me back almost immediately, and explained to me that persons like myself who go utterly bald after chemotherapy—and that includes losing your eyelashes—well, you get all sorts of cysts and things in your eyes because your eyelashes aren’t there to keep junk out.  Who knew eyelashes are so functional? I didn’t.

                But happily, today I finally got in to see my eye doctor and he confirmed that this little lump in my eye is annoying but totally harmless.  Yay!

                On a more serious note, perhaps our largest problem of late has been our youngest child’s reaction to all this.  Matthew, who is 8 years old, is an anxious kid anyway.  But my illness really threw him for a loop, and he started both acting out aggressively and also having anxiety attacks.  We are now seeing a very good therapist in D.C., and we think this is helping him.  It’s a schlepp to get down there, but Matthew likes him, which is great. Thanks for everyone’s prayers and good thoughts in this area!

Sorry for not writing!

Hello friends!  I have to apologize for the gap in blog updates there.  People are beginning to ask if something is wrong.  I didn't mean to scare anyone.
     I am doing very well, actually.  But the final chemo really laid me out for a while.  The docs and nurses had warned me it would get worse at the end, because some of the effects are cumulative, and they were right.  After my very first chemo treatment, I was out with my friends eating BBQ the next night!  But after the final treatment, I basically laid on the couch for ten days or so, whenever I could.  I felt much sicker, and for much longer, than I had for earlier treatments.  I did not do any writing or much reading, or much of anything beyond basic family maintenance, for a couple of weeks.  I should have had someone take my picture and post it here while I was at my sickest, because that probably was my low-water point right there, but I didn't have the presence of mind.
     The good news is, we are now three weeks and a couple days beyond the last treatment, and I am feeling better every day.  I can taste food again! I am feeling queasy much less often.  I am back to the gym now.  Soon, my hair will start growing back and my eyes will stop watering and so on.
     I am scheduled for surgery on Aug. 17 and am looking forward to having that over with.  I will be having a regular mastectomy with reconstruction, on one side only.  I have a great surgeon and plastic surgeon.  I'll be doing radiation after that, until approximately Halloween, and then hope to be done with this chapter of life.
     Thank you for your cards and casseroles and hugs and books and CDs!

Tomorrow is the LAST chemo!

                I just wanted to give everyone a quick update since I haven’t blogged for a while. I used my “really good-feeling” week to fly out to Montana to see my mom and sister.  I got back yesterday. My brother and nephew popped up from California for the weekend, and my friend Dave was in town, so it was really a wonderful time.  Saw a whole bunch of local friends, too.  It was great.  Ate huckleberry ice cream.  Saw the camas blooming up on Lolo Pass.  Drank some beer!  Dragged my mom (an octogenarian teetotaler) to the Lumberjack Saloon, if those of you who know her or it can visualize that.  She struck up a conversation with a biker who had a lovely green Harley.  He was charmed.

                The medical front was pretty boring there for a week or so. Not much had happened right after the most recent chemo treatment, the usual migraines and whatnot, but nothing too different.  But the medical professionals had said that chemo would get harder as it went, because some of the effects are cumulative, and they were right.  I was tired longer this time, and had more stomach problems that still haven’t gone away.  The sense of taste was really messed up almost the whole three weeks this time.  And the latest weirdness—something called neuropathy--in my fingertips, which basically means they’re sort of numb.  A hassle if you are trying to do beadwork!  As a result, I haven’t tried to do any this week.  Also, my fingernails are turning brown, which is something they do right before they try to fall off.  Sometimes that happens, for the same reason your hair falls out.  It is now a race against time, because the LAST chemo treatment is tomorrow!  Perhaps the fingernails will get better before they get much worse.  Time will tell.

                The other thing that happened with the last chemo treatment is I ended up with massive bruising on my arms, along with another big Taxotere burn.  I looked like an IV drug abuser, but more so. So the nurses decided to send me to Sibley Hospital today to have them install a temporary port (more like a catheter) in my arm today.  It has an IV outlet on the outside, and inside there’s a tube that winds all the way into one of the chambers of my heart.  They can pump the nasty chemo drugs straight into my heart, with no bruising or chemo burns on my arms anymore.  Probably should have done this on Day One of chemo, but nobody could have predicted my veins would wimp out as badly as they did…

                Whine of the day:  I have seen enough “breast cancer awareness” items lately.  I don’t mind the ones that are sold as fundraisers for mammograms for poor women or for cancer research or something.  But I suspect some of them belong in the Shameless Commerce Division.  This week I have seen:  pink breast cancer awareness folding camp chairs, breast cancer awareness tennis balls, breast cancer awareness zip lock bags, and even a large breast cancer awareness propane tank.  I’m pretty aware of breast cancer now, thank you very much.  But whether one extra woman actually went and got a mammogram because of any of these products, I doubt very much.

                Wish me luck tomorrow for my LAST chemo!  Yippee!  Someone will have to buy me a drink when I get my sense of taste back! For now, enjoy my newest bumper sticker, from Rockin’ Rudy’s in Missoula: