13 07 2011

I just had to drink two tall styrofoam containers full of this liquid that tasted the way pool chlorine smells. It is contrast fluid for the CT Scan. UGH! AND they made me skip lunch! Do these people sit around and THINK of ways to torture others? Yikes! 🙂

On my way to the test shortly.

(My bff Anita Griglio Kelly is bringing me carry-out from Olga’s Kitchen after the test…heavenly…)

Copyright 2011, Amy Rauch Neilson

Status Update: Stuck in Isolation

13 07 2011

It’s getting harder to hold my head up and smile. Being here is grueling. I’m thankful that I did not have the worst-case scenario, but I still know that I’m fighting something pretty big.

There are three teams of doctors from different areas — oncology, infectious disease, and surgery — who come in to see me several times a day. Since the problem seems to be Infectious Disease, the ID team has taken charge.

Yesterday, they took a sample from one of my lesions to culture. The results come back in 24 to 36 hours, so later today or tomorrow. The kind of infection I have — the possibilities run the gamut, so yesterday, they moved me into an Isolation Room.

Me in isolation seems an oxymoron. The room is actually is so technologically advanced that it has negative air flow, meaning that when someone opens the door, the air from the inside of my room does not go out. Everyone who comes in has to wear full garb — a gown and mask. It reminds me of that scene from the movie E.T.

I will have a CT Scan of my chest, abdomen and pelvis today at 2 p.m. Please pray that somehow, someway, those tumors in my lungs are gone. That would turn all of this around. I’d still have to heal from this infection, of course, but it would be real and amazing progress in my battle with breast cancer.

As for when I’m going home: Well, now it’s looking like Thursday or Friday. While I know how important it is to be here where they can take good care of me and do what needs to be done, I hate it.

I have an annual tradition with my bff Marnie Leonard Fender. Every year, we take our boys to the 4H Fair. Today was the day. I’m so sad as I look out the window at the bright sunshine, missing my boy, my husband, my life.

Last night, when Don and Theo pulled into the hospital parking lot, Theo said to Don, “Isn’t the hospital a place where people die?” And Don explained to him that while that is true, it is also a place where people get better, and Mommy would be one of those people.

I cry a lot. Lack of sleep — always someone poking, prodding, hanging bags of antibiotics, taking blood, administering a shot, taking you for a test. It is said that it is hard to get rest in the hospital and that is true. I think it’s the accumulation of all the months of chemo endured so far, with this blip just the icing on the cake. It is difficult. Most of all, I miss my little boy and my hubby, the sounds and smells and feel of home, a run for soft-serve or a boat ride.

Praying for miraculous results from my CT Scan today and also, that they figure out WHAT the infection is and that I can go home very soon.

Copyright 2011, Amy Rauch Neilson

Status Update: Doing Better

12 07 2011

Things look much brighter today. While at first the doctors were concerned that I had a blood infection, it is now looking a lot more like a subcutaneous/skin infection. I am being treated with bags of the big guns — vancomycin, a broad spectrum antibiotic.

Meanwhile, the echocardiogram of my heart looked terrific — the doctors were concerned that the infection could have reached my heart or that there may have been fluid-filled sacs there. But none of that. My heart is beautiful and beating away just as it should. Yay for that!

I had a chest X-ray at 10 p.m. last night (who KNEW they do these tests 24/7?) to rule out pneumonia — a pretty standard procedure. Chest X-ray is clear, too!

I didn’t have any idea that someone from Hospital Transport would be knocking on my door at 10 p.m. to take me to X-ray. So, I checked with the nurse, and indeed, there was a doctor’s order for an X-ray.

Down the hall we went, me on stretcher, winding through the empty hallways, the lights dimmed for the night. Very Stephen King-ish, minus the ending, which was just an uneventfful trip back to my room.

So far, I have seen doctors from Oncology, Infectious Diseases, and Surgery. There were questions as to whether or not these boils on my skin — the first of which appeared on my abdomen and the second on my left leg — should be drained. At this point, thank God, the answer is no. Better that they resolve themselves with the antibiotics and rest.

Several more have appeared on my backside. Oh, great, I thought. I will be the literal butt of many jokes for years to come. Even worse, Infectious Disease wants to culture them today so they can identify the specific bacteria and ensure I’m on the correct antibiotic. More laughter to follow as that story is told over and over again for years to come at parties and who knows what. Butt cultures. Sigh.

I am waiting for the Big Guns from oncology, who have so far taken a back seat as Infectious Disease was busy doing their work – whatever this is falls under their umbrella. It’s a process of elimination and thank God that at this point, it does seem they have ruled out a blood infection. Seems getting myself to the ER asap was a very wise move.

My fever is gone, I feel fine, really. I do need the IV antibiotics and the tests and culture results, so it looks like I will be staying for a little while. My hope is that they’ll allow me to go home tomorrow, but I do realize that I must stay as long as I need to, until it is safe to let me go home. They may allow me to go home with IV antibiotics, which I can run through my chemo port.

I don’t know what this means for my chemo regimen at this point, other than I will have to heal before I can go back. I am going to ask for a CT Scan of my lungs today as I was due for another this month anyway and, if by chance those blueberry-sized tumors in my lungs have disappeared, well now, wouldn’t that be something?

Thank you for all of your heartfelt blog and Facebook comments. They really lift me up when I’m sitting in my hospital bed awake, late at night, oh who knows, perhaps waiting for Hospital Transport to wheel me down one of the eerie hallways.

Most of all, thank you for your prayers. I’ll continue to keep you updated.

Copyright 2011, Amy Rauch Neilson

Status Update: Admitted to Hospital

11 07 2011

Last week, I could not get chemo as my white blood cell counts were too low. As is protocol, they sent me home with a regimen of five shots to take five nights in a row to boost my white blood cell counts and prepare me for chemo this week.

I did all five shots right on schedule, but it was more painful than it had ever been before. My ribs hurt so bad they felt like they were throbbing. The shots work in the bone marrow to stimulate production of white blood cells.

Then yesterday morning, I noticed a lesion on my stomach – like a boil. At first I thought maybe I’d run into something. But it quadrupled in size and finally turned black with this peculiar red ring around it. Then another one showed up on my left leg later in the day, then others on my legs, back, stomach.

Don took me to the ER first thing this morning. They’re running tests but believe I have a blood infection and my white cell counts are EVEN LOWER than a week ago, despite the booster shots. And they were LOW a week ago. The ER doc came in and told me this is very serious. I have an infection and my army is almost depleted.

They will be admitting me and starting me on a powerful round of antibiotics. I’m so very scared. I know how serious a blood infection can be. I’m praying to God that it’s not like those old commercials for the Roach Motel, where you check in, but you never check out.

Please keep me in your prayers and I’ll update as I’m able.

Copyright 2011, Amy Rauch Neilson

My YouTube Debut: Queen for a Day!

6 07 2011

Addressing the Crowd at the Howell Pink Party, June 16, 2011. Photo by Kristi Rugh Kahl.

I got to be queen for a day. OK, so it wasn’t even a whole day. It was for an evening. But, hey, I got the sash AND the tiara, so it still counts.

Becky Cwiek, a breast cancer survivor and co-founder of the Michigan Breast Cancer Coalition, invited me to speak at the Howell Pink Party, an annual event that paints the town pink from end to end. Large pastel bows decorate the street lamps and stores are decorated in anything and everything pink. Shop employees and restaurant servers are dressed in pink, as are the hundreds of people crowding the streets — survivors and supporters alike. Some wore large straw hats with big plastic flowers, others made skirts out of various shades of pink tissue paper.

“Sure,” I said. “But what do you want me to say?”

“Just tell your story,” she said.

I gave it a lot of thought in the days leading up to the festival. First, I was going to prepare a formal speech. Then, I thought, naw, it’s a casual crowd. I’ll just jot myself a couple of notes on an index card.

In the end, I didn’t do either. For the first time in my life, I stepped up to a microphone and delivered a speech without a script or some kind of aid, without truly any idea of what I was about to say. But somehow, it worked. The words flowed from me in an organized, inspiring way. I spoke for 7 minutes. And afterwards, a line of people formed, waiting to talk to me, wanting one of my “Amy. Short Name. Big Impact What’s Yours?” bracelets.

Maybe it was the tiara. Perhaps, as in a fairytale, it had magical powers that evening. That tiny, silver, gem-covered crown was definitely unexpected. As I approached the podium, I was swarmed by a bunch of ladies who fit me with a Pink Party Queen sash while simultaneously bobby-pinning a tiara into my hair. They moved so fast that they could have tarred and feathered me and I’d have been unable to defend myself. But I like the pink ribbon and tiara idea a lot better.

My bff Kristi Rugh Kahl videotaped the whole thing and, afterwards, she assured me I’d done a really great job. I couldn’t remember a thing I’d said. So, I was pretty skeptical. After all, she is one of my best friends, which makes her more likely to sugarcoat it and more than a little bit biased. So, even though she downloaded the video for me, it took me a little while to get up the nerve to watch it.

Actually, more than a little while. I downright stalled until Team Amy Leader Helene Held conspired with Kristi to get the video up on YouTube. So, there you have it. My YouTube debut.

To check it out, go to:

As for the Howell Pink Party — what a night! 100 percent of all proceeds went to benefit the Michigan Breast Cancer Coalition and the Susan G. Komen for the Cure. And for a survivor, well, there’s nothing quite so uplifting as being in the midst of hundreds of people who are fighting for the very thing you are: A Cure.

Copyright 2011, Amy Rauch Neilson

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