I Shot Myself in the Stomach…

Neupogen shot. Photo by Amy Rauch Neilson.

today at lunch. Right after making myself an egg salad sandwich.

But it wasn’t the first time. Not for the shot or the egg salad sandwich, for that matter.

While it’s true that my chemo regimen was delayed a week, I still didn’t get off scott-free. I had to take a series of three Neupogen shots. The nurse gave me the first one at the hospital Wednesday, at Noon. Then she sent me home with two more.

Usually, Don gives me the injections. But because they need to be timed at precisely 24 hours apart, this round, that took me to Noon on Thursday and Noon again on Friday, when Don’s at work.

Could I find someone to give it to me? Sure. But that’s a lot of work and unnecessary, really, when I can do it myself. Get it over with. Get back to my sandwich.

I was just talking to a Stage 3 breast cancer survivor last night who mentioned that when she read that I’d still be taking Neupogen shots this week, she felt for me. She’s been there, done that, and she knows how painful the side-effects of these shots are.

Not the tiny prick of the needle. That’s no biggie. But the after-effects. Neupogen has a job to do — working in the bone marrow to generate more white blood cells and help to boost the recipient’s counts. That job is accompanied by aches and sometimes sharp bone pain.

The first time I had such a shot was in the summer of 2006, when I was undergoing treatment for Stage 1 breast cancer. I recall my shock at how much the stimulation of the bone marrow hurt. I remember calling my sister, Julie, and describing to her that for the first time in my life, I was aware of every single, individual bone in my skull. Who knew there were so many?

Typically, the side-effects wear off 24 hours or so after the last shot. So, by Noon tomorrow, I bet I’ll be feeling like a million bucks. Let’s hope so. And let’s hope the Neupogen does its job so that next week, my body will be ready for chemo, Round 5.

It’s not fun, but I’ve learned to stay on top of the pain by getting some Motrin into my system beforehand. Distraction is also a beautiful thing. Tonight, I’ll be making a special dessert for my close friend Diane, who is graduating from the University of Michigan tomorrow with a master’s degree from the School of Education. I’m so darned proud of her. I can’t wait to see her cross the stage at Hill Auditorium.

And just wait til she sees the little blue and gold frosted cupcakes adorned with tiny, edible mortarboards and tassles afterwards.

Copyright 2011, Amy Rauch Neilson

Be Careful What You Wish For…

Left to Right: My cousins Rhonda and Lori, me, and my Aunt Helen taking a breather between frames at the March 18 Bowling Benefit. Photo by Emily Sybert.

A week or two ago, I caught myself in the middle of the strangest daydream. I was thinking to myself, “Wouldn’t it be great if chemo was one week on, two weeks off, instead of the other way around?”

Then I stopped myself short and thought, “Wow! Is that what your fantasies have been reduced to as of late?! That’s the best you can do?”

I have to admit, I did laugh out loud at just how outrageous that whole scenario was.

Well, be careful what you wish for, because you just might get it.

After a long and wonderful break from chemo over the past 10 days, I’d geared myself up for the beginning of Round 5 early this morning when… I arrived at the hospital and found out that I won’t be having chemo this week.

My oncologist thought my white blood cell counts, which were low on Monday, would rebound by today. They didn’t.

Labwork this morning showed that several of my counts are still far below the minimum threshold, so my doc made the call — my body needs recovery time. No chemo.

Of course, my first reaction was panic. What bearing will this have on my treatment? I asked, imagining the cancer getting a stronghold while I’m off. I mean, much as I dislike chemo, I don’t want to go without and give my disease any sort of advantage.

But, whew! Good news on that front. Both the Clinical Trials nurse and my Aunt Helen — who is a nurse and was my chemo buddy today — reassured me there is still plenty of chemo in my body and it’s still hard at work, even if I am unable to get my infusions this week. My low blood counts are a reflection of that fact. Meanwhile, my medical team will be considering a dose reduction, just in case the doses I’ve been receiving since I began chemo Feb. 1 are too much for my body.

I will be getting Neutrogen shots this week for three days in a row, the first of which I got before I left the hospital today. That, and the additional time off, will help to boost my counts so that I can return to the chemo chair, ready for action, next week.

In the meantime, though, I’d be lying if I said I wasn’t grinning ear to ear about this unexpected additional week off. Two weeks off in a row! For a cancer patient, that’s pure bliss.

So, be careful what you wish for, because you just might get it. But then again, if you do, it might work out just fine.

Copyright 2011, Amy Rauch Neilson

Here, There, and Everywhere!

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

Where to Find Financial Assistance

If you’ve ever been through cancer treatment — or are close to someone who has — you have likely witnessed not just the physical and emotional strain of the disease, but the financial fallout as well.

Thank God there are lots of organizations out there who have made it their mission to help cancer patients navigate these rocky waters. Good people. Really good. I know because I’ve talked with many of them first hand. They are top-notch, compassionate, and willing to help in any way that they can. And they’ve offered me help. Real help.

My blog post for The Pink Fund this week is dedicated to those organizations and people who are devoted to reaching across that great divide, grabbing hold of a cancer patient’s hand and helping to guide him or her to the other side of impending financial crisis.

If you or someone you know is battling cancer and needs financial assistance, be sure to pass my blog post from The Pink Fund on. You’ll give them two gifts — the chance for help when they need it most and the opportunity and ability to focus on Job #1: Getting Better.

Copyright 2011, Amy Rauch Neilson

Blood, Sweat, and Tears…But Not in That Order

Image Courtesy of the American Red Cross.

There was blood, sweat, and tears yesterday, but not in that order.

First came the tears.

Friday was Parent/Teacher Conference Day at Theo’s school. I pride myself on being organized and efficient. I claimed our slot the first day the sign-up sheets were posted. Then, I came home and marked it on our family calendar. I’m sure somewhere in my subconcious, this thought lurked: I may be fighting breast cancer, but I can still manage our daily life with the best of ‘em!

I thought our conference was at 10:20 a.m. I would have bet money on it. Big money.

So, when we arrived at 10:15, I thought we were right on schedule.

Not.

There was another parent waiting awkwardly in the wings as Theo’s teacher explained that we were late; our 20-minute conference slot had been at 10 a.m.

There was a perfectly reasonable solution to this problem — 11 a.m was wide open and in the meantime, we could meet with Theo’s music teacher. But I broke down sobbing anyway. Right there, in the school lobby.

That should have been my first clue.

I pulled myself together — well, mostly — and we met with Theo’s music teacher and then his classroom teacher. They are both terrific and, despite my earlier breakdown, it went well.

Next, the sweat.

My bff Anita Griglio Kelly chauffered me to yesterday’s chemo infusion. I was feeling pretty weak when we arrived, but I was determined to get my treatment. I had chills, then sweats, then chills again. That mystery was short-lived after the lab results of blood drawn when I arrived at the Infusion Center came back. Although I’d had an infusion of Procrit on Tuesday in an effort to raise my red blood cell counts, they had continued to plummet. I needed two units of blood, asap.

Finally, the blood.

Following my chemo infusion, I went straight to the ER, where the doctors and nurses prepared me for the first blood tranfusions of my life. I’d been on the giving end many a time. It was a bit surreal to be on the receiving end.

My blood was sent to the lab to confirm and reconfirm that my blood type is indeed A+, then “cross-matched” for other markers that would indicate which packets of the donor blood available were the least likely to be rejected by my body.

Finally, two units of the most beautiful crimson liquid I’ve ever seen in my life arrived in Room 8 of the ER. Might as well have been liquid gold. The nurse accessed my port and the tranfusions began.

During the next six hours, as I watched the blood slowly drip from the bag and travel through clear plastic tubing to the port in my chest, I wondered who it was who had been kind, generous, and selfless enough to donate blood for a complete stranger. I would never know.

But if I could, I would tell that person that their gift restored and rejuvenated the Mom of a little five-year-old boy named Theo and the Wife of a loving husband named Don who just yesterday told me that he is treasuring every day we have together on this planet. I’d tell them that I went from a woman so low on “fuel” that she could barely sustain a simple Parent/Teacher conference earlier that day, to one who cooked a breakfast of french toast and bacon with her family the very next morning. Most of all, I’d say two simple words: Thank you.

Several times last evening I looked up at that donor bag of blood and thanked God that there was someone out there who was willing to give it, destination unknown.

So, although I am humbled and grateful for the many people who are stepping forward to donate blood on my behalf, designated specifically for me should I need it in the upcoming months, I also have another request.

Whether or not you are A+, whether or not you can help me specifically, please give blood.

There are lots of “Amys” out there who desperately need it. Go to The Red Cross website and make an appointment. There are convenient donation sites all around, it takes but a few minutes, and it is truly a life-changing gift.

Copyright 2011, Amy Rauch Neilson

Status Update: Halfway There

One transfusion down, one to go. I’ve never had a transfusion before, so it is good news that I had no adverse reaction to the first one. The ER team is ready to start the second one. They are terrific and double and triple check everything — very impressive.

My friend Anita Griglio Kelly is here with me. She drove me to chemo today — and here I promised her a “short day” as Friday is usually the shorter of my two days of chemo for the week. Ha! She’ll never believe me again after this!

But she is a great sport — she has been since the day we met back in Mrs. Sudlow’s first grade class at Beechview Elementary. That’s the year I ate the entire bag of Tootsie Rolls she’d brought in for her birthday treat — while she was busy in Reading Group. I was too afraid to confess — but it became quite obvious who the culprit was when I got sick. My Mom had to bring in a “replacement” treat and we had to celebrate Anita’s birthday the day after.

I can’t believe she still wanted to be my friend after that. But, here she is, still by my side all these years later.

We hope to blow this popsicle stand before Midnight. Anita says she plans to post that “we were out together til Midnight” on her Facebook page and allow her fb friends to draw their own conclusions…

Copyright 2011, Amy Rauch Neilson

Seeing Red; Needing It More

I finished my chemotherapy treatment today, but despite the Procrit infusion I was given on Tuesday in the hopes that it would boost my low hemoglobin, my counts actually fell lower between Tuesday and today. So, I am in the ER, waiting for two units of blood, which will take about six to seven hours to infuse.

There isnt time for any of the wonderful people who wanted to donate blood for me to do that this time, but my nurse did contact the Red Cross for next time. I will share the protocol for donating, specifically marked for me and my future needs, asap.

At times like this, I fear that my body is falling apart, one piece at a time, and I pray that I get through this, find my way to remission and to starting and leading the vision of my foundation.

Right at this moment, I just feel so tired and defeated. This is not where I want to be. More than anything, I just want to be home on a Friday night with my family, snuggled up in bed, watching a movie together.

Today, my son’s Easter Break began. Usually, i’d be at gymnastics with him and my sister-in-law, Carrie, and her four year old, Mara. We’d be bouncing and giggling on the trampolines and then off to Mickey D’s for a cheeseburger.

But I had to be here instead and I really hate that.

When I told Theo I couldn’t go to gymnastics today, but had to go to the doctor’s instead, his face fell. It crushed me.

Copyright 2011, Amy Rauch Neilson

Oh, Great Crappy Day!

Today, I felt physically horrible. Yet, great things happened.

Physically horrible because not only are my white blood cell counts down — which meant Don has had to give me shots of Neupogen the past two nights, the injection that helps my white counts to recover, but makes every bone and muscle in my body ache in the process.

This Chemo Round, there’s also the added complication of a low Hemoglobin count. Tuesday’s chemo was a game-time decision; the doctors considered my counts before finally deciding to go ahead with my infusions. I was given an extra infusion of a drug called Procrit on Tuesday along with my standard chemotherapy drugs, in the hopes that my counts will recover and I will not need a transfusion.

But speaking of great things, I was humbled and deeply touched by the number of people who stepped forward yesterday and today to offer to roll up their sleeves and donate their blood for me, in case I do need a transfusion. Don’t ever bother to tell me there aren’t a lot of wonderful, giving people in the world, because I won’t believe you. Not for a second. I’ve seen way too much to the contrary to ever believe anything else.

And on to more great things — today, I heard from television, print, and radio media regarding upcoming interviews to help get the word out there about my story, the unlikelihood of this diagnosis after all of the preventative measures I took and the aggressive treatments I underwent, and the hope that this information will help to save lives, many lives through better methods of self-examination post-mastectomy as well as monitoring.

I have dreamed of starting a foundation for more than two decades. I wasn’t sure exactly what shape it would take, but I’ve always wanted to find a way to help people on a large scale. I think the pieces of the puzzle of just how that will happen in my life are beginning to fit together.

I had the good fortune to end up spending more than two decades as a financial writer/editor, which means I have acquired a good understanding of investment vehicles and how they work. My plan is to use this background down the road to manage the financial end of my foundation to help all donations and revenues to grow and thrive so that the funds can help as many people as possible.

I see the foundation as growing out of http://www.itsinthegenes.org in a multi-faceted way. I have big plans, many of which I am already moving from the planning stages into the actual implementation of the ideas.

It’s all, always, in God’s time. And He, no matter how confusing or difficult the circumstances in which you find yourself, is always right.

Copyright 2011, Amy Rauch Neilson

Status Update: Positive News!

Yes, I know you must feel like yo-yos. I do, too.

But the meeting with my oncologist today went very well. What she said made a lot of sense. And I trust her and her insights and medical knowledge. She is a good egg.

I was accompanied by my husband, Don, and sister, Lisa. We covered all the bases, got all our questions answered, such as:

Yes! the CT Scan really does indicate shrinkage in the four lung tumors! Yes, it is entirely possible that the three spots showing on my liver are benign/hemangiomas! Yes! There are lots and lots of treatments available and for now, there’s no need to worry about that, as this one is working!

I’m wiped out at the moment, but wanted to post and say, Yes! I think we are indeed headed in the right direction!

More later…promise. This takes a lot outta a girl.

Copyright 2011, Amy Rauch Neilson

Status Update: Doctor’s Office

At doctor’s office waiting to see my Oncologist and hoping for answers. Also hope I don’t start sobbing. I hate when I do that.

I smell hyacinths which remind me of Spring and miracles. Maybe I’ll pick some up on the way home.

Copyright 2011 Amy Rauch Neilson