Energy Crisis

I last posted on June 20th. That was the day after chemo, when I was still hopped up on steroids from the previous day. Even though I’d barely slept the night before, I still had the energy to run a couple of errands and meet Sissa at the pool.

It’s been a long, hard week since then.

The reality is that it’s been the worst week yet. Karen, the kind chemo nurse, told me it would be so. I’d hoped she was wrong, but unfortunately she was right on. Each time I’ve had treatment, it’s taken me a little longer to recover and feel mostly normal. Today is the first day I’ve really felt decent since last Monday. It’s not that I’m all pukey or anything, but mainly an extreme fatigue, coupled with a queasiness that increases if I need to eat, yet at the same time makes me not want to eat. I’ve been trying to eat anyway, especially since the red counts were down, but I’ve still been losing weight. Hey, at least I don’t have to worry about being bald AND fat.

However, it’s very wearing for me, mentally, to not have the energy to do the simplest things. On Sunday, for example, it was wearing me out to stand and eat a donut at church. Even more so when people stopped to ask me how I was doing and I had to stand, hold a donut, and breathe enough to speak. I’m not kidding. I was literally leaning on a table, feeling like I was going to fall out. Who AM I these days? A few months ago, it was no big deal for me to feed 200 people at a wedding reception—now I can barely feed myself a square donut!

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I know there are some of you who are anxious to hear what the craving of the week is. Just so you know, I’m totally over the nacho cheese thing. This week’s craving is….birthday cake. You know, with the big, gaudy icing flowers? Normally, I’m not that much of a cake fan, and if I were to choose cake, it would probably be something a little more exotic than regular old birthday cake. But, there’s no accounting for this chemo craving thing, so birthday cake it is—white or yellow, please, with lots of icing.

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Mini Me has been a big help this week, taking up my slack while I’ve spent most of my time laying around. However, she is just ten, and in spite of her efforts, the house has been generally going to pot. Ten year olds will do the dishes, while somehow forgetting the dinner plates they forgot to clear from the table. Ten year olds will also not notice the big chunks of their breakfast burrito that fell to the floor, or the grass they tracked in, or the black toe prints—I doubt I even want to know what that black is—all over the kitchen. Ten year olds think nothing of the fact that ALL of their shoes have somehow migrated to just inside the doorway, or that their beading supplies are strewn all over the living room. They think that the window sill is a perfectly logical place to put the recyclable plastics.

I am thankful to have her help—I can’t imagine what I’d do if she were a toddler right now! But this never quite getting everything clean deal is adding up. I’m starting to feel like I live with the barn house man—the local crazy who has just stacks and stacks of all manner of junk everywhere, and once built an ark in his yard from scrap wood and old windows. Maybe I should start building an addition onto the house with the shoes and plastics. Most of those plastics are clear—I think I’ll build a sunroom! Or at least maybe I will, when I have the energy.

4 Down, 4 to Go

Woo hoo! I have now officially passed the halfway mark in my treatment regimen. Four down, four to go. This also means I’m done with the Adriamyacin–which is the chemo drug that’s the color of red Kool-aid and which will eat your tissue should it escape from the vein. Lovely stuff. Did I mention that it looks like red Kool-aid, but it makes you pee orange Kool-aid? Like I didn’t already feel like enough of a freak from being bald, turning into a water sausage, and not thinking real….fast.

This week I was informed that my red blood cell counts were low, and therefore I needed Neulasta’s cousin, Aranesp. I probably don’t even want to know how much that one costs, but I can tell you that unlike the relatively pain-free Neulasta shot, this little bugger hurts like a mug! And, it left a nasty purple bruise on my gut, too! No belly shirts for me this week, I guess.

Next round of chemo will be Taxol, which by all accounts is easier, except for one little thing. Taxol causes allergic reactions in many people. To combat this, they pump you full of steroids before the treatment, as well as adding them to your IV drip, along with Benadryl. Since I’m severely allergic to aspirin, I’m just a tad uptight about the prospect of anaphylactic shock. I’ve done that, and let me tell you, breaking out in hives, losing the ability to breathe, and having your blood pressure bottom out is NOT FUN. I guess I’m just not into the whole near-death experience sort of thing. So, I would appreciate prayers that the Taxol thing will go smoothly, and also that I won’t stress out about it too bad.

I’ve been told that the reason I don’t sleep well the night of my treatment is because of the steroids they give me. I’m thinking that with the super-doses I’ll be taking in order to survive the Taxol, I’m not gonna sleep for a week. I guess I’ll just stay up and bench press the Jeep while I grow a lot of facial hair. Anybody need their house moved?

God Treats

Many of you have heard me refer to what I call God Treats. God Treats are happy little surprises that God provides just to let you know that He knows you well (and still likes you in spite of it) and hasn’t forgotten about you. They’re not generic, but usually pretty specific to your particular likes and wants. They’re not basic things that you need…they’re extra little goodies that you want and enjoy. Hence why I call them treats.

Last week, I had two such treats, both by way of friends who were unsuspecting instruments of God.

A tiny bit of history, for those who may not know…I’m a foodie. In fact, I’m a little snobby about my food most of the time. No pre-fabricated vittles here, no Ma’am, only that which is made from scratch, using things like real butter and no MSG thankyouverymuch. However, this chemo has me craving, curiously, that goopy substance commonly referred to as nacho cheese. (Yeah, I don’t know why either.) I hadn’t voiced this craving to anyone. I’d simply savored my ballpark pretzel–or at least I’d enjoyed using it as a carrier for the much coveted nacho cheese goo.

On Wednesday after my last treatment, Molly called and said, “I’m coming out, what do you want for lunch?” I told her the only thing that sounded good was a baked potato, so she promised to bring taters and sour cream. End of conversation. Lo and behold, when she arrived what to my wondering eyes should appear from her bag o’ groceries? Nacho cheese. She said, because she was almost sure I’d turn my nose up at it, “They had these buy one, get one free…I didn’t know if you’d want one or not.” Want one? *swoon* Did I ever! That, my friends, was God Treat number one.

Then, on Sunday morning I was getting ready for church. I whine to Hubster, “I need some summer shirts” as I’m trying to figure out what to wear. Now, it’s not like I’m running around naked or anything, so maybe saying I “need” them was a little strong. But, sometimes your wardrobe just needs a little jumpstart–and especially when you’re bald and all of a sudden you have to totally change your style to match your head or your funky new cowboy hat.

Fast forward to me at church running into my friend Diana who tells me that her daughter is cleaning out her closet and they brought me a couple of shirts. HELLO! God Treat Alert. Is that cool or what?

So, thanks to my friends for allowing themselves to be used by God to give me the little treats that perk me up. And thanks to God for not only providing the basic stuff, but the fun extra stuff, too.

What a Bargain!

I haven’t written lately because I’ve been feeling tired and not terribly witty, and one of my pet peeves is boring blog posts. I didn’t want to post just for the sake of posting, and have it just be dull. I guess I’m just a stickler for quality, what can I say?

When I asked Dr. Birhiray about my increased fatigue, soreness, and the fact that I felt like a water sausage last go-round, he attributed it to the Neulasta. I guess I’m lucky, considering that one of the potential side-effects is having your spleen explode.

You all remember the Neulasta, right? It’s that belly-shot that I have to take every time that enabled me to fend off Angie’s salmonella germs, along with all the other germs when I visted her at the hospital. It’s also the shot that I’d told you was ridiculously expensive, at $3600 a pop. Well, I need to make a correction, because it’s not $3600, but instead it is exactly three thousand six hundred and eighty-seven dollars…and FIFTY CENTS. (Apparently somebody at Amgen, maker of Neulasta, needed some change to buy themselves a pop.) Gee, when we’re talking about $3687, why not just round up to $3688 instead of tacking on $.50? Is this supposed to make me think I’m getting a bargain? “Wow! Look, Honey, Neulasta’s on SALE for $3687.50! The regular price is $3688…let’s get two this week!”

Clearly they don’t know who they’re dealing with, here. I’m the person who thinks the Goodwill is charging too much these days (and it is—they get the stuff for FREE for crying out loud—but I digress…), and who won’t buy anything unless it’s at least 75% off. So, Amgen, maker of Neulasta, I am not impressed with your attempt to Jedi mind-trick me into thinking you’re doing me some favor, okay? I don’t have any choice but to take the shot, so that extra 50 cents wouldn’t lose any sales for you.

Party

 

They say that after chemo, your hair sometimes grows back in a different texture and color. Most often it grows back curlier than before. But, you know I’m such a rebel, I just had to grow mine back straight—and purple—as you can see in the new picture. Came back pretty quick, huh? Actually, that picture was taken Saturday, at the party my girlfriends threw for me. Aren’t they the coolest? The new hair is a ball that the kids & maybe the dogs had maimed to the point of having a gaping hole that I could stretch over my head. (Remember what I said about doing anything for a laugh?)

I’m standing in front of a banner Sissa made that says “Gettin’ Wiggy With It.” She and Angie and Molly put their heads together to throw me a super fun cookout, complete with lots of food, plenty of friends, crazy hats, and the added excitement of a trip to the emergency room for Molly’s son, Brandon. Believe it or not, the trip to the ER didn’t even have anything to do with the trampoline or the fire pit. Fortunately, that happened a while before the party was to start, and once patched back together, Brandon still got to partake in most of the festivities, including use of the aforementioned trampoline and fire pit.