Here, There, and Everywhere!

26 04 2011

Theo, riding the Carousel at Greenfield Village, Dearborn, Mich. Photo by Amy Rauch Neilson.

Where have I been?

I’ve been getting that question a lot in the past week.

Yes, I realize I haven’t posted a blog entry in several days.

What was I doing?

Many things.

For starters, and most importantly, I was spending time with my little munchkin. Last week was his Spring Break, which also coincided with my week off of chemo — hallelujah! What great timing!

So, Monday, we went to see the movie Rio with my sis-in-law, Carrie, and family. LOVED it! It was in 3D and the colors were magnificent, the story line just plain fun. I’d see it again and for me to say that about a movie, well, that’s saying something.

Tuesday, we were out at my friend Diane’s house, coloring Easter eggs. Thursday we spent the day at the Henry Ford Museum/Greenfield Village with my cousin Christine and kids. I actually thought I wasn’t up to doing Greenfield Village — didn’t think I had the energy. But then Christine suggested that Theo and I join them for a ride or two and perhaps lunch — easy does it, a little bit of fresh air and sunshine.

So, we did.

One ride led to another…one hour blurred into the next, and before we knew it, it was mid-afternoon! I was energized by the fresh air, the sunshine, the people, the Model T and train rides, the Carousel (yes, of COURSE I rode on the carousel and yes, that is indeed a frog wearing clothing that Theo is riding on!) and the frozen custard stand!

There is nothing more important than family and so when I’m with my family, everything else has to wait. Don was off for the long holiday weekend. There was Easter service at church, brunch with my sister Lisa and family, friend Elaine and daughter Mackenzie, more than one Easter Egg hunt.

I also had my moments. My Mom passed on Good Friday in 1992. As the years have gone by, I have learned how to not just get through the holiday without her, but also how to enjoy it with my family and friends. But this year — I’m certain because of my cancer diagnosis and the parallels between my life and hers — it was a bit more trying.

Did I have a ball? Did I do my share of crying? Yes.

Also of concern was a new pressure I’ve been feeling on my chest, with an accompanying cough that began late last week. Though I can breathe in and completely fill my lungs, the symptoms bother me. It is likely just a flare up of my asthma, but when you have a diagnosis as serious as mine, every little thing is cause for concern.

I did see my oncologist yesterday and she checked me out thoroughly. If the cough/chest pressure continue, she’ll order an X-ray. But I must say it’s easing up and, I’m hoping, will soon be gone.

Meantime, my white blood cell counts — despite the week off and the Neupogen shots — are still too low for me to have chemo today. So, my infusions have been postponed until tomorrow morning, when my oncologist expects those counts will have made their way back into the normal range. Let’s hope so. Much as I dislike chemo, I dislike the thought of not getting it a whole lot more.

Could I be doing something differently, something to help those counts rebound? I asked. No. It’s not a matter of more rest, eating, or exercise. It’s just a matter of the chemo and its toll on my body. But good news — one of the clinical trials nurses told me that often, a patient’s counts fall low and chemo needs to be rescheduled long before Round 5 — which is what I start tomorrow. She said that shows just how strong my body is. Thank God for that.

And, after much thought, prayer and discussion, we have decided to seek a second opinion at MD Anderson in Houston, Texas, with the full blessing and cooperation of my current oncologist.

This has been on my mind for many, many weeks. But in recent days, I feel quite confident that God has been leading me in this direction. There are many fine cancer treatment centers and we considered several of them. But honestly, if I’m going to go for a second opinion, I want it to be from the best cancer center in the country. So, the process of getting the referrals and doing the necessary scheduling is underway. Please pray our health insurance provider allows this request to go through without throwing up a bunch of roadblocks.

Finally, there’s been a lot going on in the media arena. Fox 2 has indicated an interest in doing a feature story on me and my diagnosis in an effort to educate, as has The Detroit Free Press. I am also working on laying the foundation for the ItsIntheGenes.org organization. I have lots of ideas that I am confident will save lives and I am busy getting the first big one into the pipeline.

I know this blog post has meandered all over the place. I guess that’s what happens when you’ve got a lot of catching up to do. I feel as though I’ve just had a long lunch with a close friend and I’m tossing the cloth napkin onto the table and pushing my chair back.

Copyright 2011, Amy Rauch Neilson

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15 responses

26 04 2011
Kristi Rugh Kahl

Welcome back………..we’ve missed you! But soooo glad you had family and fun time! We’re still here and not going anywhere!

26 04 2011
Amy Youngblood

God bless you Amy, and that is possibly one of the sweetest pictures I have ever seen.

26 04 2011
Geri-

What a touching note..Thank you. Right know I am in a hotel across from Beth Israel in Boston. I found out last Wednesday that I am BRCA 2 positive, saw the gyn-onc-surgeon on Thursday, due to a questionable mass on one of my fallopian tubes, my mom is dying literally of ovarian cancer anytime now…and increased abdominal girth, weight gain—

But they did a BSO and left my uterus as I was told research strongly suggests that with BRCA 2, leaving the uterus will decrease breast cancer risk by 50%, and then taking Tamoxifen another 50%.

There was no cancer, but I have the genetic mutation, lost my ovaries, have no kids, wanted them but I am 43. I’m losing my Mom, my house is closing on Friday — I got married last May and it had to be sold, but it’s sad because I owned it for 17 years. I feel like I have lost so much..I am scared and feel alone –so alone-I am in so much pain..my mom is dying –just tough. I am sorry if I sound like I am being selfish.

26 04 2011
Amy Rauch Neilson

You are not selfish, Geri. You are going through tough times — really tough times. I am so sorry for this. I know what it’s like to lose your Mom. It’s awful and no one can ever replace her. My heart goes out to you.

Good for you for doing what you had to do to save your own life. That is a big and courageous step.

When you are ready, think outside the box about the other ways you can bring what you so wish into your life. Children can be adopted. Look at Sandra Bullock. She is the same age as you if not a year or two older, and she’s got beautiful baby Louie. You can do it, too. Try to remember that even in the darkest moments of life, there is a light just around the bend.

And, may I encourage you to check out FORCE — the national organization that supports and educates women who carry one of the two BRCA mutations. Great people. You will be surrounded by love and support.

26 04 2011
Kate

Look at that little face riding the infamous frog! Who can blame you. Am so happy that you were able to spend Theo’s vacation with him doing fun things. Glad you are back to blogging though. Its good to hear from you.

26 04 2011
Doris Nielson

Amy, I will keep praying that God will direct you in this second opinion and also that the insurance will take it up without any difficulty. So thrilled you were able to spend time with Theo and with other family members. Love the picture of Theo and will try to copy it. He’s a handsome lad! But I may be a bit prejudice. You are on my churche’s prayerlist as well. love you. Aunt Doris

26 04 2011
Laura Kasischke

Oh, thank God! I was so hoping, on Easter, that you were having some fun and that Easter eggs were involved! But I never imagined a carousel on Thursday! Hooray!

26 04 2011
Crystal

Hey Miss Amy-
Glad to hear you’ve had a good week off with much time with your Theo. I thought of you last week when I had my mammies grammed. My tech said she was glad I came for my annual and to remind/encourage others to have theirs done. So, I hope you don’t mind if I tag along on this one to do just that.

Ladies — If you don’t already, make sure to get your girls checked out. Early detection is your best defense.

Hugs to you, Amy. Thinking of you and praying for you. The ladies in my small group ask about you each week. So, tonight I can give them an update and specific request for improved white blood cell counts.

26 04 2011
Deborah Ann Peters

Even though many of us may have missed the daily blogs, it is more important that you spent time with family during the spring break. I am glad that you enjoyed yourself through the week. I will continue to pray for you as this new adventure takes place in your life.

27 04 2011
Michael

Hi Amy….back to see how you are feeling. My wife,who has a grade 3 uterine cancer,and I are getting ready for her chemo on Friday at U of Michigan’s Cancer Center. This will be our first treatment out of the six we have to go thru.
I am learning quite a bit from your words on some things to be aware of during chemo.

27 04 2011
Tracey

Awe, that is one of the cutest pictures!! Glad you and the family had such a great-fun Easter Week. And also, I will be praying that everything goes through with you being able to see the Doctor in Houston.

27 04 2011
Marnie

Hi Aim,
So glad you resurfaced on your blog. I was beginning to worry that I’d have to put out an APB on you! Glad you were having such a fantastic time with the family! As you know I’m a bit partial to Greenfield Village myself! Glad to hear that you are following your heart, head and gut in getting a second expert opinion…it certainly won’t hurt and may provide more information and alternatives. Look out Houston…..here comes Amy! (I’ll refrain from the “Houston, we have a problem” jokes). Hope your blood counts are rebounding and you can “belly up to the bar” again, so to speak. MUCH LOVE.

27 04 2011
Janice Domanski

Love the idea of MD Anderson- you go girl!!!

27 04 2011
Karen

Amy, my dad was at the MD Anderson Center. I feel without him going their he would have left this world a lot sooner than he did. They were all wonderful from the hotel to the hospital, the transportation, desk people, doctors, etc….. I hope you have a great experience and good results with them. Your a strong wonderful girl and I can’t wait to see you on T.V. “Superstar!!”

GO GIRL!!!!
Karen

12 05 2011
Barbara Rimoshytus

Amy – I have a friend who is currently getting treated at MD Anderson for stage IV (I think) breast cancer. She can’t say enough about it and relocated from RI to be treated. If you would like to get in touch with her let me know. She is a wonderfully upbeat and optimistic person as you seem to be. She said she would be happy to answer any questions you might have.

Let me know!

Barbara

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