So, if a picture can be worth a thousand words, I hope that a blog post can transform itself in the same way.
CT Scan Results, the Word from the Indy Doc
26 10 2011Comments : 17 Comments »
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Status Update: All seems fine!
20 10 2011On 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!
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What’s Going On?
20 10 2011That’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
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Why Indianapolis? What’s There? And Why Now?
19 10 2011I’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
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Status Update: Home from Chemo
18 10 2011Just 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
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“I’m Gonna Love You Through It.”
14 10 2011A 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.
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
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Tags: amy rauch neilson, BRCA 1 gene, BRCA 2, breast cancer diagnosis, breast cancer support, fighting breast cancer, i'm gonna love you through it, importance of support through cancer, martina mcbride, recurrent breast cancer
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Status Update: Out of Surgery
13 10 2011Just 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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Status Update: On the Operating Room Table
13 10 2011The scene is a vivid one, as I’ve been there many times before and I know what those final moments are like, when the surgeon comes to your side, places his or her hand on your arm, asks you if you are ready to go.
You nod and try to smile from beneath the blue hair net, already groggy from the IV drugs that are the first phase of the anesthesia. They roll you into the operating room, you look up long enough to see the bright cluster of lights overhead, and then everything goes black.
My niece Natalie’s surgery began at 7 a.m. this morning. The surgeon will first perform a Sentinel Node biopsy on both sides just as an extreme precaution. I am thrilled that Natalie has a surgeon with that kind of wisdom. The results will answer the question as to whether or not any breast cancer cells had begun to develop prior to her surgery and if so, if they had had a chance to spread. Chances are very slim, so we are not worried. We are just happy that her doctors are taking the extra step.
Next, her surgeon will perform the double mastectomy and then the plastic surgeon will step in immediately to begin the first steps of Natalie’s reconstruction — placement of her temporary implants, which will slowly be inflated with fluids in the coming months. She will likely be released from the hospital tomorrow or Saturday.
Please keep her in your prayers today and in the upcoming days and weeks. The surgery is both physically a nightmare (my sister Julie says she remembers every detail and she had hers back in the late 1980s) and mentally a challenge as well.
I must add, however, that all of the anxiety that I was feeling dissipated after conversations with both my sister Julie, and my niece (Julie’s daughter) Natalie. Both were so at peace with the decision that after talking with them, I was able to calm myself and work through the pain of seeing Natalie go through this.
There are, and have been, some interesting signs along the way. Back in 2006, my double-mastecomy was scheduled for Good Friday — the same day we lost my Mom to cancer in 1992. It was such an odd day for the surgeons to schedule surgery, and it was just odd that that was the date that came up on their calendars, that they offered to me. I found comfort in that, that somehow, it was a sign from my parents in heaven above that they were watching over me and that all would be fine.
More irony in today’s date. Today would have been my Dad’s 76th birthday. How strange that the surgeons looked at their calendars, coordinated their schedules, and today is the date that came up. When I mentioned this to my bff Kristi Rugh Kahl, she said there was no other explanation than that my parents were once again sending a sign that they are right beside us as my sisters and niece and our families go through this together, and do what must be done. There’s not a doubt in my mind that she’s right.
Meanwhile, I will also be at the hospital today, receiving the second of four treatments in Round 10 of my chemotherapy. I guess our family is keeping the hospital staff quite busy today.
Please continue to pray for Natalie, that the surgery goes off without a hitch, and that her healing does, too. She will be sent home with drainage tubes, as was I, which will remain in place for a couple of weeks. I couldn’t wait to get those things out.
The recovery is pretty grueling as well. I remember my sister Julie taking me to the park on a fresh, sunny spring day — out for my first walk since surgery. I envisioned myself, well, walking. Not a 5K or anything, but hey, a quarter mile would have been terrific. I couldn’t do more than shuffle about 10 steps — and that was about 10 days after my surgery. I remember being just oh so shocked at how reluctant my body was, how desperately it wanted to hang on to all it had so that every ounce could go toward my healing.
But Natalie is amazing, and the fourth woman in our family to undergo this procedure. I know she will come through with flying colors. And what I wish for her, what we all wish and pray for her, is a long, happy, cancer-free life. After today, she is well on her way to just that.
Copyright 2011, Amy Rauch Neilson
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Cautiously Victorious
12 10 2011The first thing that came to mind after I saw the fruits — and veggies — of my labor begin to drizzle into the bottom cup of my juicer was the color. Green. Grass green. First leaves of spring green.
Oh who cares what color green? The fact that it was green was plenty for starters.
insects and animals to eat. Without this, life as we know it, would not exist. Some of the many amazing benefits of chlorophyll include; powerful detoxifying properties including that of the liver, as well as removing unfriendly bacteria,
parasites and mold. Chlorophyll can also improve our blood quality due to its molecular make up, similar to hemoglobin.
It helps increase red blood cell count and increases the movement of oxygen throughout our blood. It also helps the repair and growth of all tissues in the body. (Source: www.juicerecipesnow.com.)
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Kyle’s Corner Lights the Way With $10,000 + in Donations!
10 10 2011The numbers are in! Congratulations to Kyle’s Corner — Kyle Peterson’s family and friends raised more than $10,500 for this year’s walk — coming in as the top family/friend team!
The total raised for the Ann Arbor, Mich. walk last Saturday night was a whopping $104,000!
Those funds will be used to continue the effort to find cures for blood cancers. For more about the walk and The Leukemia & Lymphoma Society, go to: www.lightthenight.org
Congrats to Kyle’s Corner and everyone who participated! Whatta night! What an inspiring night!
For more on Kyle’s story, see my September 26, 2011 blog post.
Photo: That’s me, left, next to Kyle’s Mom, my long-time friend Kim Boggs Peterson; bottom row, left to right: Theo, Kyle and two of Kyle’s other biggest fans. Photo by Don Neilson.
Copyright 2011, Amy Rauch Neilson
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