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 responses

15 07 2011

I’m so glad that the CT scan proved that your treatments are continuing to do their job! I am very relieved and thrilled! That is a real win! I’m sorry you have to stay put for now, but enjoy people waiting on you and rest up so you can fully enjoy being home again. Won’t be long! Much love!

15 07 2011
Paul Vachon

Looks like our positive thoughts are working, Amy! Godspeed!


15 07 2011
Rita P

Thrilled that the lesions are healing. Guess I don’t understand the mystery: if I remember correctly they took cultures AFTER they started the Vancomycin. Right?
I.V. Vanco is sufficiently potent to kill less-than MRSA bacteria rather rapidly. Why are they surprised nothing is growing? (rhetorical question) I’ve had “big mama” abscesses that test negative after being on ORAL (less potent) antibiotics for several days.

Ah well, that’s why THEY are the docs. Love and healing to you, amazing soul!

15 07 2011
Auntie Helen

My SWEET Amy– You bring such joy to others with your writing, truly a gift.Always in my thoughts and prayers. Love to all. Auntie Helen

15 07 2011

This is a beautiful post. I can just see you snuggled up with your boys. Hope you get to go home soon!

15 07 2011

Good news re the treatment! Glad to hear it. I’m sorry about the extended stay, though. And here’s a new one: Mom AND Meg both came down with shingles and they don’t live anywhere NEAR each other! Hmmmm…..

Miss you,

15 07 2011
Kim Peterson

Glad you are doing better – if you have down time and need company please let me know… always willing to come up to visit you.

Did you see this yesterday?! Borneo rainbow toad seen for 1st time in 87 years

I figured it was a good sign….he came out to wish you some good luck…..

Stay positive…the weekend will be over before you know it!

15 07 2011
Cathy Carey

WOnderful news. Let’s hope you get out of there ASAP. Nothing worse than being trapped in the hospital, especially in isolation.

15 07 2011
Marie Petrides

Amy way to go with the homerun!!!! It seems when I read your blogs that I am reading my own thoughts. My nodules in my lungs I have been told are to small to biopsy as well… stable it is!!!! I am sorry about your extended hospital stay……but this too shall pass. Keep fighting the fight and stay strong. Wishing you happy, healing thoughts…..My favorite saying is I may have cancer but cancer doesnt have me…..Take Care

15 07 2011
Cathie Ferdon

This is really great news! You’ll be home before you know it.

15 07 2011

A homerun followed by a triple-play after at bats! I am THRILLED with the CT scan results, the fast healing and that you are finally feeling like fabulous you again! So sorry they are still caging the butterfly… but also glad they are protecting your oh so beautiful vitality, and that you have such amazing friends coming to visity you in jail. Prayers still coming, and looking forward to your next amazing Friday night! Big love to you Aimers.

15 07 2011
Deborah Ann Peters

We will take that homerun for now. The next homerun will be when the bases are loaded!! You are lucky I am not there. I would be in your hospital room until I was kicked out. I would play cards with you, and might let you win one game, but I would kick your “lesioned butt.”
On a serious note, I am very sorry that you may have to stay in the hospital over the week-end. I know you would much rather be home with Don and Theo. Hang in there Amy, stay stong and rejoice in the good news for now.

15 07 2011
Maija Kibens

Bravo, Amy! It could so be that what they don’t know won’t hurt you — as, indeed, it seems it hasn’t. Great news, happy winning at cards & more!

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