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?
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