And the Color Returned to My Life…

17 07 2011

My boys, fishing off our dock on a perfect summer's eve. Photo by Amy Rauch Neilson.

I was greeted by two men — one small, one big — who came running out to the car when I got home from the hospital yesterday around lunchtime. My cuz Lori brought me home to the fanfare.

Though I spent much of the day resting (translated: reading Oprah Magazine and snoozing — they never do let you get any rest in the hospital), last evening, I wandered out to one of our Adirondack chairs and watched my boys fish off of our dock.

The color, I realized as the egg yolk of the sun dripped and dipped toward the horizon, had returned to my life.

Amen to that.

Copyright 2011, Amy Rauch Neilson


Status Update: Homeward Bound!

16 07 2011

Simon and Garfunkel would be jealous. They sang about wishing they were homeward bound. But I actually AM!

They are springing me from this place this morning. Hallelujah! I’m just waiting for the Oncology team to make their rounds and, once they sign the paperwork, I’m outta here!

I actually had a taste of freedom last evening as the head docs from Infectious Disease and Dermatology both signed off on me and said I was ready to go home. I was quite pleasantly surprised by that turn in events as I’d been told to expect to be here til Monday.

Don and Theo were here with me, visiting. We were trying to do a modified version of our Friday Night family thing in my hospital room. The summer sky was gorgeous and it was so clear that we could see the RenCen and the rest of the Detroit Skyline from my hospital window. Theo was snuggled into bed beside me, watching an episode of Transformers on my iPad, when they told me I could start packing.

You’ve never seen such a whirlwind — IV pole and all. We got me packed up in minutes and I was sitting on the edge of my bed (and my seat) when the nurse came in and told me there was a glitch. They couldn’t find anyone from the Oncology Team to sign off on me. The rules (you KNOW how I feel about rules, and for good reason!) state that someone from Oncology must either be present at the hospital to sign off on me, or he or she can do it electronically via computer from elsewhere. It has to be someone who had seen me at some point this week. None of the team members who had seen me was here and those who were reachable didn’t have computer access, wherever they were.

By this time, it was 9:15 and I was exhausted from a long day that ended with several biopsies of my sores, which was painful and I ached. So, I knew I could do this another 12 hours, even if what I truly wanted was to get in the car with my boys, roll the windows down and let the fresh summer air fill my lungs,

Theo was my heartbreak. As soon as he heard that Mommy wasn’t going to be able to come home after all, he collapsed into a heap of sobs and little boy kicking. He exhibited what we were all feeling.

My heart ached for him, as I know this has been a tough, confusing week for him and knew how much he wanted and needed me home. I wrapped him into my arms and rocked him and promised that everything was going to be OK; Mommy really was coming home in the morning.

“But what if you don’t?” he said. And we understood. He, like us, had been hearing all week tomorrow, tomorrow, tomorrow. And though Don and I understood, Theo, after all, is only 5. And his question was logical.

Indeed I AM coming home today, and what a homecoming it will be! I have learned so much this week, medically, spiritually, and have much to share with you after I get settled in.

Thank you for all of your notes, blog comments, and most of all, prayers this week. I can assure you that not only did the Great Physician hear them, He answered them.

Copyright 2011, Amy Rauch Neilson

Status Update: On Mysteries, Good News, and Going Home

15 07 2011

It feels like I’m a character trapped inside my own personal mystery novel. So far, all of the results on the lab cultures have come back negative. As cultures usually show positive within 72 hours if they’re going to do so, and we’re nearing the witching hour this afternoon, it appears that I don’t have the shingles, staph, or MERSA that they were testing for.

On the very positive front, the antibiotics I’ve been getting all week are working. No new lesions and the ones that I do have are healing very nicely.

Other positive news — the CT Scan of my chest showed that the tumors in my lungs remain STABLE. That, as my oncologist says, is always a home run. She came by to see me yesterday and also mentioned that the tumors are so small they are difficult to measure. So STABLE in my case can also mean slightly smaller. I am so grateful that they are small and my breathing is, as one of my docs reported just last week, beautiful.

Yesterday and today I really noticed a difference overall. Tuesday and Wednesday there were a lot of tears. It’s frustrating to be in isolation, to not know what’s wrong with you or when you’ll be going home (every day they add a day), and to miss your LIFE. I cannot WAIT to go home and be able to snuggle up with my hubby and son and watch a movie, let Theo fall asleep next to me and listen to the sound of his breathing. I love that.

But Thursday I really turned a corner, physically, psychologically. My bff Anita Griglio Kelly stopped by Target and brought me NEW JAMMIES! There’s nothing like a new pair of pink, purple, aqua and olive pjs covered in very studious looking owls — along with a shower — to make a hospital patient feel almost normal again! My bff Tabitha stopped by and made me laugh, always good for the soul. And my cousin Lori brought DINNER — carry-out Italian from one of my favorite restaurants.

There is really nothing stopping me from going home today. Except. Except the doctors still don’t know what this is, and they want to know before they release me. It’s the final piece of the puzzle. I haven’t had a fever since Monday, all my vitals are perfect, my sores are disappearing rapidly, and I feel terrific. All of that is in place.

All we need now is that final answer. What is it? Added to the teams of terrific docs that have been racking their brains all week to figure this out is the Dermatology Team, which just came on board yesterday. Amazing minds and kind souls. They plan to do a biopsy of one of the larger sores today to see if pathology can find the answer. They are also searching the possible side-effects of the experimental PARP Inhibitor that is part of my chemo regimen to see if these types of skin lesions have ever shown up in another patient.

So, word on the street is that I am NOT going home today. Sigh. The team of docs just left the room after telling me that I would be staying the weekend. So difficult. But my college roommate Esther promised to come up tonight and play cards with me if they didn’t release me today. I am so holding her to that. She also told me that she’s not a very good card player, so BONUS! I get someone to play cards with AND I get to win!

I’m still holding out hope that life will turn on a dime, as it so often does, that they’ll find the answer and send me home perhaps sometime over the weekend. Friday has always been my favorite day of the week. I love it when Don comes home from work and the three of us are together, just hanging out, the whole weekend stretching before us. We make dinner together or order Chinese carry-out, make a run for fresh crickets for the frogs, stop for an ice cream, watch a movie and fall asleep to the sound of Spring Peepers and American Toads accompanied by the beautiful and spontaneous flashes of lightning bugs searching for their mates.

Time will tell.

Copyright 2011, Amy Rauch Neilson


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

%d bloggers like this: