Amy, Unplugged

25 03 2011

When the nurse accesses my port, the pressure feels a lot like being plugged in -- only I'm the outlet. Photo by Amy Rauch Neilson.

After today’s chemotherapy treatment, it’s 12 down, 36 to go. That’s the best estimate I’ve got at this point.

No one really knows, of course. Because it all depends. It depends on how quickly the Big Ugly Monster is wiped out of my body by the chemotherapy drugs and the power of prayer. Forty-eight treatments is a generous estimate, so I’m hoping that we’ll lick this thing far short of that.

After today, I could very well be a quarter of the way there — or even better than a quarter. That’s, of course, what I’m hoping for. What we’re all hoping for.

I need big-time prayers for Monday, as the first CT Scan of my chest has been scheduled for 2:30 p.m. I don’t expect to have results right away. The images will be sent to my doctors to be read. I hope for some clue as to how close we are to winning this war by week’s end, maybe sooner. Rest assured that as soon as I hear something, I’ll let you know.

In the meantime, I’m off to chemotherapy in a little while. I’m not feeling so brave this morning. In fact, I feel pretty awful, physically and mentally.

When I was at the hospital getting my treatment on Tuesday, the Clinical Trials nurse, Robin, went over my blood panel results with me. My white blood cell counts are way down. Something needs to be done about that. And that something comes in the form of a big shot called Neulasta, which I loathe, because it makes my bones ache for 24 hours afterwards.

But when Robin laid out the options — one Neulasta, or five Neupogen, OR, if I pick up an infection, a hospital stay because I have nothing with which to fight it, well, you can see why I chose the single Neulasta shot today, even if it is the size of a Cuban missile.

When my white blood counts are down, I feel yucky all around. Don said he can tell even before the lab results are in. I don’t rebound as quickly. I’m tired. I have constant nausea. I think I want to eat something, then after I make it or order it, I find that I don’t want it afterall.

So, the bright side is, after I have the Neulasta shot and wait out the aches and pains that accompany it, I ought to start feeling a lot better. And, there’s a lot to look forward to, as next week is my week “off” chemo.

But I still have to get through today. My friend Sandy Sherman Sarlund — we grew up in the same neighborhood and go all the way back to elementary school — will be here in a few minutes. I’m really looking forward to that. She’s bringing breakfast for now and dinner for later, and we’ll hang out a bit and chat over coffee. Then my friend Diane Baldwin will pick me up and take me to my chemo appointment.

I’m only getting one infusion today — the PARP Inhibitor — yet still, I’m feeling grumpy about it. I get so tired of the poking and prodding sometimes. I try to counter those feelings with, “Well, at least they can do something for me. At least there is a treatment and I’m getting it. At least they didn’t tell me at diagnosis, ‘You need to get your affairs in order.'” It could be worse.

Yet, somehow, today, even the “it could be worse” scenario is only brushing the surface. I want to get today’s treatment over with asap so I can come home and be with my family.

What do I dread most about the actual treatments themselves? A couple of things. The flushing of my port, for one.

My port needs to be flushed both before and after every infusion. As soon as that liquid enters my port, my mouth fills with a horrible, metallic taste. Blech.

And then there’s the insertion of the needle into my port itself. I do have a prescription for a lidocaine cream that numbs the area that I apply before leaving for the hospital. I only forgot to do that once. Believe me, you forget to do it once, and you’ll never forget again.

So, I don’t feel pain upon insertion. What I do feel is this weird pressure that I can only compare to the sensation of plugging something into an outlet — only my chest is the outlet.

I can’t wait til I’m back to life as usual, unplugged.

Note: Yesterday, I was having some technical difficulties with my blog site, so I’m not sure that yesterday’s blog entry went out via email to my subscribers. If you didn’t get a notice in your email box yesterday regarding a new post, know that there was indeed a new one — It’s called Lose Yourself.

Copyright 2011, Amy Rauch Neilson




15 responses

25 03 2011
Kristi Rugh Kahl

Hang in there bff! We’re all rooting and praying for you. And you know what…you are entitled to have “down” moments. But since I know you so well, you’ll be bouncing around this weekend enjoying time with Don and Theo! Big prayers coming your way for Monday’s scan!! xoxo bff #5

25 03 2011
brian Murphy

Got my wrist band on, giving a fist pump, hoping it all goes well, and joining you in thanking your friends for their help (Hi Diane!).

25 03 2011
Carol Clemens


So be a grouch! Everyone is entitled to a day or three like that. That’s what we’re here for, so you can pour out whatever and feel better for gotten it out of your system.

Love, Carol

25 03 2011
Laurie Horn

Thinking of you and praying for the best possible results next week and for strength to get you through today.

25 03 2011

Amy, to avoid the metallic taste, try having a popsicle while they are infusing. That’s what they did for me during my chemo.

25 03 2011

Many rosaries have already been sent your way and you know you can count on more to come.

May you have Peace and JOY too even when you feel like crap.

25 03 2011
Sandy Sherman-Sarlund

It was great seeing you this am. Captain did think I “cheated” on him when I got home. Let me know when you are up for more bagels & dinner 🙂 (piccata next!) As always, my thoughts & prayers are with you. Let me know if you need anything 🙂

25 03 2011
Amy Youngblood

Hi Amy,
I read your post just now. I usually feel like I don’t have anything useful to say to someone so I try to make them laugh. I don’t really have it in me today to try and think of something witty and judging from your post it might take a lot to get a laugh out of you today. So be crabby today, and then tomorrow back on board because you are going to have a lot to look forward to, I just know it.
So what helps me with that nasty port draining is bringing a clementine to treatment and sniffing the heck out of it (peeled of course) while they flush the port. I CAN’T STAND THAT smell and taste it for me is the worst part of the whole infusion center visit. One day I actually fell asleep with a clementine peel over my nose. I think my sister took a pic of me like that. Maybe I will forward that to you and you can have a laugh.
I will be praying for you all weekend. It will be a pray fest over here in Highland.

25 03 2011


Each day I read your blog post and remind myself to keep you in my thoughts.

You WILL get through this.


25 03 2011
Linda Stanislawski

Lifting you up in prayer as you fight to live and be well. Long heathy life to you, Amy.

25 03 2011

You keep your spirits up. The Amy I know, even in the worst of circumstances, always has a smile on her face, a giggle in her voice, and the happiness that she is succeeding at driving me nuts with little to no trouble! Just recall moving with my Surburban with a broken heater core and all that fog on the windows which turned out to be antifreeze!

25 03 2011
Sharon (Hudson) Frisch

Praying for you, Amy, today and always…

26 03 2011


26 03 2011

Tons of prayers coming your way for Mondays CT scan. xoxoxoxoxo

31 03 2011
Sara Nickerson

Sending lots of prayers your way! I’m almost done with my chemo–2 treatments left, assuming all goes well. Those Neulasta shots truely are nasty, but I guess it’s better than the alternative. I’ll have to try some of the tips left by other readers regarding the metalic taste! I thought it was the chemo drugs and hadn’t even considered the port flushing chemicals. Take care, and I hope all your tests come out well!

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