CT Scan Results, the Word from the Indy Doc

26 10 2011

Christopher, hauling Theo off the field after his team took the Fall Ball championship game. Photo by Amy Rauch Neilson.

So, if a picture can be worth a thousand words, I hope that a blog post can transform itself in the same way.

My doctor called Monday with my results from Thursday’s CT Scan of my chest. The results were excellent. Both of the spots in my lung shrunk by an additional 1 mm each — they are each less than a centimeter now. My liver remains stable. And there’s nothing new to be seen, except…
And this is the part that took my breath away. My doctor said the radiologist had seen something in my thoracic spine. As much studying and reading as I’ve done in recent months, all I heard her say was “spine,” and the phone might as well have slid out of my hand and hit the floor with a thud. Thoracic spine is the term for the 12 thoracic (chest) bones.
I immediately thought “spine” and thought she was telling me that they were seeing a new growth in my spine. My mind was off and running — OMG, it’s over! I’ve got cancer in my spine! Not the case. Thank God.
What she was saying is that the area in my collar bone, which had been identified on the PET Scan way back when all of this began in January, was now bigger. More panic, though she very quickly clarified.
When you go to the ER because you think you have fractured a bone, an XRay may not tell the whole story — at least, not right away. If it’s a hairline fracture, it may not show up at all initially. But, two weeks later, as that bone begins to heal, it may indeed show up on an XRay.
Same goes for the small spot seen in my collarbone so many months ago. As a bone heals, it becomes more dense and may then show up on imaging when it previously did not. So, though that spot on my bone has never been confirmed via biopsy as a breast cancer metastasis to my collar bone, my doctors suspected it was. And now, after all this time, it looks like it is healing!
Whew! That was a long way for my mind to wind and bend and curve to absorb what she was saying, and that it was indeed good news.
Nothing else showed up on my CT Scan to indicate why I was having such severe pain on my right side last Thursday. That pain has lessened quite a bit and the potentially serious issues — like a blood clot in my lung or an infection in my port — have been ruled out. It could be something as simple as a pulled muscle. Even so, the doctor would like some additional imaging, perhaps a repeat PET Scan. Just for another look.
That’s the report from last Thursday.
Friday, as you know, we drove down to Indianpolis to see Dr. Waldo, a biochemist, M.D., and Ph.D., whose philosophy is very much parallel to that of Dr. Serban-Schreiber, whom I’ve mentioned numerous times in this blog as the author of Anti-Cancer: A New Way of Life.
Don and I spent two full hours with Dr. Waldo, who went over every system in my body with us, using the results of dozens of tubes of blood he’d ordered drawn from me in labs in August and September. With this data, he is able to examine my body at the cellular level.
The best way I can explain what he told us (I felt a lot like I was back sitting in chemistry class) is to say that he went through my body, system by system, and showed us how we are really made up of dozens of what I’ll  call “gears” — like a clock if you were to open it up and look inside. When they’re not functioning properly, these gears may be running counterclockwise, when they should be moving clockwise. Or, perhaps the teeth on a gear in one body system are bent, or broken off, or otherwise not operating correctly. Or, there’s a log-jam of sorts between two gears, so that the good stuff the first gear is carrying (let’s say Iron, or Serotonin), is not reaching — and therefore, not being absorbed by, the second gear, where it is in desperate need.
When this happens — and it does in all of us — it can make our bodies susceptible to all kinds of maladies, from the annoying (sinus), to the life-threatening (cancer). Dr. Waldo not only showed us which systems aren’t operating properly in me, but also explained the chemicals in my body —  either the over or underabundance of — that were causing these issues. Then, he explained how we would go about fixing these issues, one system at a time, starting with my gut. That’s the area where problems start for most people.
So, though I feel I’m oversimplifying a bit, I can’t possibly explain in one blog all that he said. But I can, and I think I did, give you a good overview. And, as the weeks pass and I begin to follow the program he’s outlined for me, I will continue to share it with you.
Dr. Waldo said the toughest part is going to be the next 8 weeks, when I will be on a very strict eating plan and a course of various supplements. If I want this to work, I’ve got to stay on that eating plan. No cheating. None. Because just a day “off the wagon” returns me to ground zero and I have to start all over again.
That said, when he sees me again in late December, he expects I will have made some pretty significant progress. He’s seen it before in his other cancer patients, some of them with the BRCA 1 gene. There are, of course, never any guarantees. But I believe — as does he — that the combination of continued chemotherapy (he smiled from ear to ear when we were discussing the PARP Inhibitor that I am on — he is so pleased about this and strongly believes in its efficacy with gene-related breast cancers) along with his diet and supplement program, will reap great rewards. The goal is to deal with the current crisis, work with me, my body, and my doctors here in the Detroit area to get me into remission — and keep me there.
Does he believe I can conquer this and go on to live in remission for decades? He nodded an emphatic yes to this question. I believe it, too. And while I know there is no magic, no guarantees, no hocus-pocus, I do believe in God’s gift of free will. I’m exercising it to the fullest. And I believe God also gifts each and every one of us, as he has Dr. Waldo, in order that He may work through them to help us.
Indiana was all good news. We were so relieved, as we truly did not know what to expect and I was quite nervous on the drive down.
Once we left the doctor’s office, we breathed deeply of the fresh autumn air and took in the warmth of a sunny, late fall day. We spent the remainder of the weekend visiting the Indianapolis Children’s Museum — which just happens to have a special frog exhibit going on now through January (lucky Theo) — taking a walk through a very Spooky Forest, going for a boatride, and watching a local championship baseball game in which our friends’ son, Christopher, was playing.
Next on the agenda? As soon as I get the call from the dietician, who will outline the specifics of my food plan, I’m going to be eating like my life depends on it. Because I believe in large part, it does.
Copyright 2011, Amy Rauch Neilson
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Status Update: All seems fine!

20 10 2011

On my way home! Port checked out fine with what they call a flush and good blood return. I was able to get chemo and am now off til Nov. 1!

They sent me for a CT Scan with results to come stat, but the doc checked me thoroughly and all seems ok. I am sooo relieved and thankful.

We are off to Indianapolis tomorrow! Praise God!





What’s Going On?

20 10 2011

That’s what I’d like to know. I’ve had this pain in my upper right arm/shoulder area for a couple of days, and I thought it was a pulled muscle.

It got worse as the day wore on yesterday, then felt pretty acute when I woke up this morning. And there is tenderness is in the area surrounding my port. That’s a new symptom as of this morning. Panic.

So, I called the doctor. I’ll be going in shortly to be checked.

Please pray it’s nothing, no biggie, just a strained muscle or something, and not port-related.

I am praying it’s not a port gone bad that needs to be removed, or an infection.

I’ll keep you posted.

Copyright 2011, Amy Rauch Neilson





Why Indianapolis? What’s There? And Why Now?

19 10 2011

I’m going to Indianapolis this weekend. And though there will be some pleasure on this trip — a visit with close friends and a day at the famous Indianapolis Children’s Museum, followed by a spooky trail walk Saturday night — it’s also a matter of business. Medical business. My medical business.

From the day I was diagnosed with Stage 4 breast cancer on January 12, 2011, I’ve been digging. And reading. And asking questions. I’ve been a sponge, absorbing everything I possibly could about my illness and the myriad of ways I could come at it to get myself healthy, go into remission, go on with life.

When I look back at the last 10 months, though they have been grueling and painful on so many levels — physically, mentally, emotionally, financially — it’s also been an amazing journey so far. I can’t believe the people I’ve met, the contacts I’ve made, the information I’ve learned about the human body and how it works. I’ve crossed paths with Kris Carr, best-selling author of Crazy, Sexy, Cancer and a nine-year cancer survivor. I’ve met Molly MacDonald, breast cancer survivor and founder of The Pink Fund, and had not only the opportunity to blog for the fund, but play a role in their awareness and marketing video this past summer. And I’ve reconnected with long-time friend Scott Orwig, who introduced me to the amazing work and findings of Dr. David Serban-Schreiber, M.D., Ph.D.

I can’t meet with Dr. David Serban-Schreiber. Sadly, he passed away this past July at the age of 50. But not until he’d succeeded in living 19 years with brain cancer — 17 years in remission. That, in itself, is an amazing feat. But he did not go from this planet without leaving behind an amazing plethora of information for all of us who are fighting cancer — or any serious and/or chronic disease. His message, his information, his discoveries — they live on and are right here in front of us to help each of us prevent ourselves from ever getting a serious disease or, put up the best fight possible for one that’s already been diagnosed — with the goal of complete remission and lots of years left on this planet. Lots of years.

I was an English and Writing Instructor at Washtenaw Community College in Ann Arbor, Mich. for a decade. I loved it. I always chose to teach Composition I, because that’s where I would have a classroom filled with college freshmen who were taking the course only because it was part of the general curriculum requirements. No Comp I, no degree down the road.

Why would I choose to teach young people, many of whom did not want to be in my classroom? Who’d rather be, and understandably so, in a class that dealt with whatever it was that was their real passion in life, whatever it was that they planned to spend the rest of their working years doing?

Because.

Because I had a message for each and every young person in each and every class: Writing is an invaluable skill, no matter what occupation you’re pursuing. Trust me on this. And then I’d spend the semester showing them why. How a nurse going off shift, for example, needs to transfer patient information to the nurse coming on. How, whatever career you choose, you will find yourself, your coworkers and your superiors frustrated if you can’t communicate what you know, your ideas, your solutions. What you’re thinking. No one says you have to be a novelist — or even a reporter, for that matter. But basic written communication skills — those are a must.

Then, I’d share this story with them. It’s about my Great Aunt Tina, who was born in the 1880s. I was named after her. That’s where the Tina comes from: Amy Tina Rauch Neilson. She lived a long life, passing away in 1979, when I was 10 years old. So, I had the privilege of knowing her. But I was too young to really get to know her story.

One of her possessions that came to me after I was first married was a cedar chest. It’s always had a place at the end of our bed, filled with crocheted blankets, extra sweaters and the like. Then one chilly fall day, as I was looking through that pile of blankets, I noticed some parchment paper at the very bottom of the chest. I looked a little deeper, pushed the paper aside, and there it was.

My Great Aunt Tina’s autograph book and journal from her school years. I read through the whole thing. And there’s not a lot there — but the fact that there is anything there, that this little book filled with her handwriting, her stories, signatures from her classmates — exists in 2011, well, that is quite amazing. That is the story I shared with my students each and every semester, and let me tell you, they were spellbound by it.

Write it down, I’d tell them. Anything. Something. As often as you can. Doesn’t need to be perfect or long. Just do it. The generations that come after you, after you are gone from this earth, will treasure it. It will be one of their strongest links to you and the story of your life. Who you were.

For most of us, journals and writings that we may keep throughout our lives will pass on to the next generations. They won’t become best-selling books. They were likely never meant to be that. And that’s perfectly OK.

But some writing — even if the author doesn’t know it at the time — is meant to be that. Such is the story of Dr. David Serban-Schreiber, who, after being diagnosed with a brain tumor at the age of 31, first thought there wasn’t any more that he could do to get himself well than to follow the standard protocol. So, that’s what he did, his cancer went into remission, and his life went on.

Until.

Until it came back. And that’s when he started to really question, really dig into why the rates of cancer were escalating, rather than falling, in the United States — where scientific advancements were among the best in the world. He tells his story both in the YouTube video I’ve linked to in this blog, as well as in his book: Anti-Cancer: A New Way of Life.

From the video:

“After the first treatment, I didn’t change anything in my lifestyle because nobody suggested it would make any difference,” he says. “I was very confident in the medical system…doing what they told me to do and leaving the rest up to God.”

David went into a hard-fought remission — and continued his eating habits — four Pepsi’s a day and a diet high in sugar and fat. He had no idea at that time that his diet was one of the major players in his illness.

“Everyone agrees this is an epidemic. It’s not because we’re growing older, because children have more cancer than they ever used to. So, something about our way of life is creating this cancer epidemic. So, of course it is reversible.

“We need to change the factors in our environment and in our way of living that promote cancer growth, and back track — get back to the things that are much healthier for our bodies.”

He dedicated the rest of his life to digging for those answers. He did the hard part. The work, the research, the writing, the speaking, the sharing. What he left for all of us is a roadmap on how to get ourselves back to healthy. And that is why I spent 10 years teaching my students that learning how to write and communicate — well, those are two priceless jewels in life.

Back to my trip to Indianapolis. My physician, Dr. Ralph Waldo, M.D., Ph.D., and a biochemist, follows that same protocol. That’s why, since I’ve been under his care since July, I’ve been changing my diet. I cut out sugar and replaced it with Blue Agave — a totally natural sweetener that is safe for our bodies. I’ve started juicing on a daily basis. The spice Turmeric is a part of my diet every day — and if I can’t work it into my food program, I dissolve it in olive oil and mix it with black pepper (per Dr. Schreiber’s findings and advice) and down it.

What do I care what it tastes like? That’s a small price to pay for a spice that has been proven in long-term clinical trials to make cancer cells — particularly breast cancer cells — more receptive to chemo. It lowers their defenses and makes my chemotherapy treatments more effective. My last scan, August 30, 2011, showed more dramatic improvement than any previous scan — tumor shrinkage. Real tumor shrinkage. My results have continued to head in the right direction ever since then. Who can argue with that?

Do I believe we should all abandon medical treatment like chemotherapy and radiation and go holistic? Certainly not. Neither did Dr. Schreiber. But what I do believe is that we can play a huge role in the success of preventing and treating disease in ourselves by following the treatment plan our doctors prescribe for us — and also doing our part with diet and exercise. The perfect trifecta.

That’s why I’ll be hanging on to Dr. Waldo’s every word this weekend. He now has in his possession the results of dozens of tubes of bloodwork — my red gold — that will tell him what he needs to know about me down to the cellular level. I will leave with a diet and supplement protocol that is tailored specifically to me, as an individual. That is where the future of disease treatment is headed — and very rapidly, I might add.

And that’s a bandwagon I want to be on.

Check out what Dr. Schreiber has to say along these lines in the YouTube video. It’s 10 minutes that I promise will change the way you think. And it could very well save your life — or the life of someone close to you.

Copyright 2011, Amy Rauch Neilson





Status Update: Home from Chemo

18 10 2011

Just walked in the door from today’s chemo treatment. This is Round 10 and that was treatment three of four, sooooo (drumroll, please), after Thursday, I’ll have completed 10 rounds and I won’t have to go back til Nov. 1. Hallelujah!

I’ve got to rest now and hope that a nap will give me enough strength to spend time with my boys this evening. I’m betting yes, if even for a short while. Thanks to my neighbor and bff K-Rod for being my driver today. You made the time fly by with happy chatter! I almost forgot where I was!

Copyright 2011, Amy Rauch Neilson





“I’m Gonna Love You Through It.”

14 10 2011

A couple of times early on after my diagnosis, Don called me from work to say he’d lined up a sitter for Theo and that he’d like to take me out to dinner. Just the two of us.

Sounds romantic. And it is. Except.

Except that I was gripped by this terrible, irrational fear that he was going to tell me he couldn’t do this anymore, go along with me on this journey.

So, when we got to Carrabba’s and I was looking like a deer caught in the headlights rather than a wife out with her husband on a Friday night, he was confused.

“What’s wrong?” he asked once we were seated in our booth. “Did you want to go somewhere else?”

I stared at the table for a moment, then worked up the courage to say, “I’m afraid you’re going to tell me you can’t do this anymore.” And how could I blame him, really? This, my second cancer diagnosis in five years, the first coming when Don was just 32, me, 37.

Don reached across the table and covered my hands with his.

“I just want to have dinner with the woman I love,” he said. “I’m not going anywhere.”

It isn’t all that irrational if you look at the statistics — as many as 50 percent of marriages dissolve after a cancer diagnosis.

But we all know that when you’ve got the Real Deal — a hubby like mine — statistics are bunk.

It was silly. But I was scared.

A few days ago, Don sent me the most beautiful music video by Martina McBride that captures what this whole journey is all about. Then, this morning, my neighbor, Sue, sent it to me as well.

Me and my hubby, enjoying a ride on our pontoon boat. I just watched it. Again. And cried. Again. But they were very happy tears and a reminder that while the journey is tough, so much of what comes out of it can indeed be beautiful.

It is amazing. But a word of caution before you press “play” — grab a box of Kleenex first. (Click on Martina McBride’s name, above, and it will take you to the video.)

Copyright 2011, Amy Rauch Neilson





Status Update: Out of Surgery

13 10 2011

Just wanted to post a quick note to say Natalie was out of surgery by about 3 p.m. and all went very well. There’s no sign of anything “suspicious” from the surgeon’s initial check of the tissue that was removed. It’s all good news, with Natalie headed for her hospital room. She should be home by the weekend.

Meanwhile, my sister Lisa just dropped me off at home following my chemo treatment today. This morning, Lisa brought over a crock pot filled with fresh veggies and pot roast, along with peaches and homemade bread, made her way into my kitchen, plugged the crock pot in, and whisked me off to chemo. Such a talented and efficient family I come from!

Thank you for all of your continued prayers.

Copyright 2011, Amy Rauch Neilson








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