Posted: 12/8/2015

It's been a while since I updated so here's the (extensive) skinny. Short version: I'm bald, chemo blows, I'm almost to the next phase of it, and I'm not dead yet.

About 10 days after I buzzed my head, I got out of the shower to find that most of the 1/4 inch of hair growth I had was still hanging in there on the sides and back of my head. It was as dark and fluffy as always. But it had almost completely fallen out on the top. It looked like I had an extremely unattractive case of male-pattern baldness. All that remained was an amount of peach fuzz that wouldn't have even made a teenage boy proud. And I could feel it waving gently in the breeze as I walked. So weird feeling. So the razor blades came out, and I've now looked like Kilroy (see below) for a few weeks.

But fear not! Those random bastard chin hairs we're always fighting? (Ladies, you know the ones I mean.) Those are still in there trying to fight the good fight. Good to know some things never change.

Meanwhile, the every 2-week chemo schedule has been continuing. I've done three of the four sessions of those now. The good news is that it doesn't hurt. They use my port, which I numb first with Emla cream, to take blood and then give me my meds. The bad news is that it feels...weird. Unpleasantly weird. It creates turbulence in the large blood vessels in the middle of my chest, which is a very disconcerting feeling. At the same time, it makes my mouth water in that I-may-be-sick-soon way that your mouth sometimes does, while also creating a sour taste in the back of my throat. I'm finding the more times I go, the more I dread it.

The side effects of it haven't been too bad though until this past week. Usually, I would feel a little off on the Monday of chemo. Then Wednesday would be the worst, with enormous fatigue - even walking to the next room would wind me - and anything that brought on the fatigue would also cause nausea and lightheadedness and general feelings of awfulness. But then that would gradually improve over the next several days, so that by the weekend I felt fairly normal.

This last round was worse though. I was nauseated to the point of vomiting a few times (the first time that's happened) the Monday of chemo and felt fatigued and terrible all week. By the time the weekend rolled around I was a little better but not feeling normal yet. In fact, I wanted badly to go on a memorial motorcycle ride on Sunday for a friend who killed himself. I ended up having to ride on the back of my own bike because I wasn't strong enough to do it myself. Jeremiah is one of the few people I would pillion for, but it was discouraging to admit I couldn't ride on my own.

And now it's Tuesday. I was feeling better this morning. Yay! My plan to work tomorrow looked like it was going to happen. Yay! I took my oldest son out for breakfast before school this morning and had a nice meal with him. Yay! I had a nice little breakfast burrito. Not because I wanted one, mind you - my appetite has been disappearing - but because I knew I needed to eat something. Then it turned out that it gave me food poisoning. Are you f$^*ing kidding me? So now I've spent the day on the couch trying to not move so the stomach cramps don't flare up, and not being able to eat like I know I need to. Which means I'll probably be more tired and more easily fatigueable again tomorrow.

So, going to work gets pushed back at least one more day. And that bums me out. I like work! Going gives me a sense of normalcy and purpose. It saves some of my vacation time for later when I may need it more than now. I get to see my co-workers, whom I love. I get to see the babies and their families, whom I love. Well, most of the families...

But that's where I am right now. All of the exciting, fast-paced changes and updates are over for now. Now it's just the daily grind of suckitude. Every day when I wake up, I'm having to monitor myself. Do I have enough energy that I can drive the kids to school? Is that terrible feeling I have nausea or hunger? Or maybe it's heartburn? I need to figure it out so I know which med to take or maybe just eat something. Do I even have any appetite for that matter? Probably not. What can I make myself eat anyway? When everyone gets home, can I make anything for them to eat or will standing that long be too much?

It's nothing earth-shattering or terrible. It's just this ongoing feeling of being weak, or at least weakened, and I hate it. I'm not used to not knowing what my body can do on any given day. I'm not used to not being able to plan anything very well because I just don't know how I'll feel. I mean, I've been meaning to type this update for days but didn't have the energy. Granted, it's better than being dead. But still. Aggravating.

And on the topic of eating, the amazing Amy Sheinberg and S Van Lokey sent us an enormous and much-appreciated food care package, which we've been enjoying on some of my down days. And my wonderful in-laws, Chris and Terry Smithhave brought us food multiple times. And then my dear Katherine Mary Smith even set up a care calendar for me a while back.

I didn't publicize the care calendar because it meant admitting I might need some help and I felt like I didn't need help. And mostly I didn't really. But the time may be starting to come where I could use a little in the future. So I wanted to let people know that should you feel moved to (and PLEASE don't feel like anyone needs to, because I know about busy lives and obligations, and lord knows Bastrop is NOWHERE NEAR most of you, so seriously. Only if you really, really want to) you can let us know if you want to bring something by, by marking it on the calendar. It's at http://www.carecalendar.org/ . The calendar ID is 224243 and security code is 6163. But I promise we will not starve if you don't. Matt's a great cook. Fire extinguisher use is much more likely when I cook.

Now that brings us to the future! One more round of the every-two weeks stuff to go on 12/14. Because of the cumulative nature of the chemo, I can look forward to feeling even crummier after the next round than I did this past time. But then on 12/28 I'll switch to weekly chemo with a different type of drug. Word on the street is that the fatigue will become ever-present, at an unknown level, but the rest of the side effects should go away. That's something to look forward to, at least.

To review the plan, it was:

Step 1: Portacath surgically implanted in my chest.

Step 2: 5 months total of chemo. I'll get a treatment every other Monday for 2 months. Then I'll switch to getting a treatment every week for 3 more months.

Step 3: Double mastectomy about a month after chemo finishes. Recovery from that will take about a month.

Step 4: After recovery from the mastectomy, 6 weeks of daily radiation treatments.

Step 5: Take an estrogen-blocking pill (tamoxifen) every day for 10 years.

Step 6: Not die.

That means I've completed Step 1, almost completed the first part of Step 2, and am continuing to do Step 6. And I suppose that's good enough for now.