by Christie Perkins
I gasped a little. Maybe I shouldn’t have. It’s silly to gasp when something is exactly what you want it to be. Perfect bloodwork. Yeah. I mean, really, who doesn’t want replenished white armored army warriors for bloodwork? You see, I was climbing back out from under my neutropenic plunk and my white blood cells and neutrophils were normalizing. I was gaining my fighting power back.
Each time I take my Ibrance pills my blood goes scuba diving.
But my gasp was not an element of birthday party surprise, it was credited to the boogie man lurking in the dark surprise. You see, the recovery from my last neutropenic plunk only meant one clear thing: If my white blood cells and neutrophils are up that means I have to start my new chemo pill. My current medication isn’t giving me the kapow I need.
Over the last 8 months my doctor has continuously dropped my current chemo pill dosing to avoid my blood levels from crashing. Each month we hope the new dosing will level out my fighting power but with each month I skid on the bottom before I get to the end of the cycle. It takes a while to get me normalized before trying the new reduced dosing. My clearance chemo isn’t quite cutting it.
And in the process my tumors have been getting hungry and beefing up.
THE LAST PET SCAN
Unusual back pain led the doctor to ditch the CAT scan and go for the PET scan instead. A PET scan is a little more picturesque. It’s a little more Michelangelo, and a little less kindergarten craftsmanship.
So, the news from my PET scan is mostly good. For the most part there are no new tumors. The bulk of the tumors on my spine, hip, center of chest, and rib are all stabilized… well except for one of the chunky ones on the bottom of my spine and one of my liver tumors.
Except. Why does that one little word have dangle and strangle me.
So you see, the hungry tumors on my liver is the real problem. I kind of need my liver a sliver. All along the doc has been saying “at least it’s not in your liver.” And then Bam! The cancer Houdini performs his tricks in my liver.
But that’s old news. And I’m over it (well, sorta…).
But we are on to the cancer Houdini’s tricks. We have our own magic potion and I wasn’t quite ready for it. Hence the gasp from good bloodwork. It’s time to start a new chemo pill. Of course anything attached to the word chemo gets me a little squirmy.
It’s time for magic potion number 9.
Magic Potion #9: Xeloda
So here’s the boring list of magic potions I’ve used to combat my cancer (skip ahead if you’re already sleepy): 8 rounds of IV chemo drugs: Adriamycin, Cytoxan,Taxol. The follow up 30 rounds of Radiation plus the extra zapping booster round. Then roughly 18 months of Tomoxifen, 8 months of Faslodex (my husband lovingly nicknamed the peanut butter shot… it seriously takes 1 1/2 minutes per shot- and there’s 2 of them. Xgeva (which technically just strengthens my bones but is helping with the side effects from cancer in my bones), Ibrance (remember the clearance chemo), and now magic potion #9: Xeloda.
And this should do the trick.
Xeloda is a true chemo pill (apparently my previous Ibrance pill was a counterfeit chemo). So… I was super nervous about it. I mean really, the fact that they warn me not to touch the pills or let any dust from a broken pill get on anything kind of freaks me out. No doubt.
And that’s why I’m confident that this magic potion should do the trick. If it obliterates my fingers, then why not the cancerous liver sliver (and everything else in it’s path)? Hm? I wonder if my esophagus is a necessary bodily attachment.
The Xeloda Load
I anguish over my new norm and imagine the worst curse from this new pill. Of course they tell you everything that can go wrong and immediately I doomsday prep for it. Somehow this makes you stronger to know the enemy before it attacks.
Um. Yeah. That’s what it does.
I do the “don’t-got-this cry” then put my dukes up as an immediate follow up plan.
I’ve got this. And hey, you know what? The best thing about all of this is I get to eat my grapefruit again. I can almost hear a host of angels singing a welcome back song.
I immediately put on that grapefruit chapstick a friend gave me and have visions of grapefruits dancing on my tongue and the splash of grapefruit drizzling and drooling down my face. (Are you gagging at the imagery) Ah. The grapefruit moment of grace. Can life get any better?
Not a chance.
I take my new pills exactly-ish 12 hours apart. I take the pill for 2 weeks then take a week off. Then boom! Hit it all again the following week for forever.The first dose was great. No side effects. I’m happy dancing over the first week of the pill because I feel
great amazing. In fact, I feel even better on this pill than I did on clearance counterfeit chemo. I have more energy and find myself skipping the daily nappings and find myself skipping to late night happenings instead.
I’ll back slap that!
Nice. Very nice. I’m super happy that the new chemo pill boogie-man-in-the-bushes ends up being a cute peppy smurf instead.
I’m loving my new pill. I never knew love and chemo could coexist. Sigh.
Then week two gets going.
Turns out the cute bush bunny smurf is named “Spitting Fire Dragon.” Cute, not cuddly. Suddenly my hands and feet are blaring and burning. Darn. I have neuropathy again. It’s not pins and needles but torched feet, hands, and eyes. I asked the doc if anyone ever gets the burning eyes.
I’m always super sensitive to the meds. Walking and twisting off the mayo lid hurts. My kids rescue my attempts. But, I’ve got this right? The cancer center tells me I’ll get peeling, blistered, hands and feet. I must keep thick lotion on all the time, wear socks to bed (oh dread) and wear “good shoes.”
And that’s when the waterfall breaks.
I called my mom and between disconnected tear-stained phrases I finally screech out, “I have to wear ugly shoes.” Yes, good shoes equals ugly shoes when you’re a shoe girl. She laughs and tells me it will be okay.
I’m not sure I believe her.
So I lather up the lotion potion and use it in unlikely quotients. No chance is this going to take me down. I wear my basketball shoes around the house (which is strange because I ONLY wear those at basketball). I attempt to sleep in socks… and knock them off around 4 a.m.
I’m adjusting. I find that I’m in intense burning pain for about 10 days and feeling good the next 10 days. I find myself getting passed up by gramps in public appearances. Not lying. I take up cushioned flip flops and socks. I can do this.
But, oh, my feet and hands burn.
I keep telling myself I’m going to do the India thing and walk across coals. Mind over matter. Mind over matter. I can do this! I positive self talk myself so much that I decide I’m going to play basketball on burning and blistered feet.
Yeah. Dumb idea.
But, hey, now I know what I can’t do. And that was worth the hurt. At least no one told me I couldn’t do it… I figured that out on my own. Why is it that the hard way is sometimes much more satisfying?
True learning moments.
We dwindle the dose down to half a dose. And for the first time I feel great. No burning (but yes peeling and blistering). But, I’m happy with this. Who doesn’t want a new layer of skin every 3 weeks? (Typically a new layer of skin takes 7 years- no lie).
I’m happy until the blood work comes in. The tumor markers are rising so it’s back to higher dosing and burning hands and feet. But, you know what, the last 3 weeks have been incredibly sweet.
Thanks doc for dropping the dose and my sweet painless treat. I enjoyed a Fish Lake vacation, girls camp, and class reunions on my half dose. I really needed the break.
So the roller coaster of meds and treatments has me all over the board. Are we making progress.? I believe so. I believe they are doing everything they can to help me. You see I pray constantly that the docs will do the right thing for me. One day when I was questioning my treatment plan I felt a confirming spiritual nod. You’ve been praying that the doctors will know what they need to do. Trust them.
So I do.
I believe that where you put your trust is where God puts His hands. And if it’s not right then he will encase you in His amazing arms carry you to where you need to be.
And though, I struggle through treatments and side effects I’m finding some personal victories. If I contemplate long enough I always find my growth. Whoever said pain and gain go together really had it all figured out.
Then it hits me. Hey, you know the India walk thing I did at basketball? Well, (if I calculated right) I did it for miles not just a wimpy hundreds of feet. And when I got home I hobbled around some more on burning feet. So you know what? I’m an India coal walking champ afterall. Maybe even a record breaker. Who knew?
And when I find a little satisfaction in the hard things I do- a little confidence builds as I realized that maybe I’m not so stinking wimpy afterall.
You know what? I think it’s time to wipe my tears, buck up, and google some ugly shoes. See what I come up with. The fight is on. Life has it’s amazing perks, even if you have to wear ugly shoes.
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