Wednesday, March 27, 2013

First Visit...

Well, I had my first visit to the Breast Center today.

When I opened my eyes this morning, I thought, "What day is it? Oh... I don't want to do this." I prayed and read my devotions and a lot of Scripture, and journaled for a while. I tried to pinpoint what exactly I was so scared of.

I think I'm scared of the truth. That I really have to go through something awful. I would much rather just have everyone be nice to me and tell me that they're praying for me than feel sick all the time, loose my hair and have my breasts removed.

Here's what it boils down to. My body is a temple of the Holy Spirit. I am a steward of that body. I only get one. Somehow it got all messed up. But I have to live in this temple as long as I am here on earth. I want to treat it with the respect it deserves.

I spent the day preparing food for a Passover Meal that we shared this evening with our small group. It's something we always did at Hanfield, the church where we spent 8 years doing ministry in Indiana, and I have done it with at least 3 small groups since moving to SD. I love this tradition. As I drove around doing errands and while I was doing meal prep in the kitchen, I put a Pandora station on my phone- starting with Passion Worship Band. That was a great station for me today. So many wonderful worship songs (not too many lame ones) and a lot about healing and victory. It was exactly what I needed.

Around 2:30, we went to meet my surgeon, his nurse, the geneticist and my nurse navigator. I was accompanied by a small entourage, Matt, my mom and my step-dad, Jim all paraded down the halls with me.

First off, let me say that the Prairie Center at Avera in Sioux Falls is BEAUTIFUL. Matt & I were honored to attend the grand opening and get a tour of the place several years ago because Lance Armstrong was the keynote speaker, and tickets were a gift from my mom. (Lance... yeah, I know. Go visit Matt's Twitter account @chewbika if you want to talk about him.)

Anyway, the people that work there are so nice. When I arrived at the right office, the receptionist said, "Oh yes, Amy! Someone brought you something!" And they brought out a beautiful, exotic bouquet and a card. I thought maybe it was a new patient thing, but no. The card was perfectly worded, and from someone that I didn't know. (Kind of confused...) Matt quickly looked the family up on Facebook, and sure enough, it is a family from Embrace (our awesome, wonderful church that somehow exists on FB as much as it does in regular life). The wife works there in the cancer center (I quick "friended" her while in the waiting room), and she was thoughtful enough to send me flowers for my first appointment. And not just any flowers. I'm thinking this is the coolest bouquet ever. Check it out!

The picture doesn't do it justice. This is a totally funky and exotic bouquet!

Seriously, what a thoughtful thing to do! Nice Random Act, Amber!

There was fun 80's music playing in the waiting room, I had my pink sparkly shoes, my pink striped socks, my Fight Like a Girl shirt, and my pink scarf with my black & white coat. I was going to have a positive attitude no matter what, dammit.

When it came time to start, my posse and I headed down the hall. The nurse weighed me. What do you know? I've lost 5 pounds (probably all that not eating I've been doing). When the doctor came in (I made the posse leave for the breast exam part- I'm not THAT open), he had a young male med student with him (I had been warned ahead of time).

"Hi I'm Dr. Dosch, and this is a med student who is shadowing me, Dr.  xlklsfj (I don't honestly remember. He instantly became "Doogie" to me.)

"Hi. I'm Amy," looking at med student. "You're twelve."

He said, "No! I'm 26, and I've been to college, I swear!"

I said, "Well, you have a nice low voice, so I know you've passed middle school."

He dropped his voice as low as he could and said, "I might be overcompensating."

Everybody touched my lumpy boobs, and discussed them for a while, then I got dressed and my posse came back. (Isn't this fun so far?)

Here's the nitty gritty.

I have Stage 1, Invasive (or Infiltrating) Ductal Carcinoma. I am positive for the Estrogen Receptor, Progesterone Receptor, and another receptor called HER-2. (If you want more info about this stuff, look here. They explain it a lot better than I do.) That part is sucky, because the HER-2 is the aggressive thing. BUT, they have specific chemotherapies developed to melt those kinds of tumors much faster, so I guess it's not as bad as it used to be, when you were pretty much screwed when you got HER-2.

I have 3 choices on surgeries. I could have a lumpectomy followed by radiation, a single or double mastectomy. I haven't made this decision yet.

It does not appear that the cancer has spread to the lymph nodes, but I am having an ultrasound and a chest MRI next week to rule that out. If it has spread, that makes it a Stage 2 cancer. So that is probably good news, but an area that could still use prayer.

They also did a genetic test on me to see if I had the BRCA mutation. We had this cute little curly-headed dollie (when did everyone else get so young?!) come and explain genes and chromosomes and DNA and mutations pretty darn well. If she had been teaching my undergrad Bio class, I probably wouldn't have gotten that ONE B in college. (Stupid Bio). Unfortunately a mutated DNA in this case just means you get cancer, not that you get super powers like in X-Men.

Darn! No superpowers for me! (Well, no NEW ones)

I won't get the results from that genetic test for a few weeks, and they won't do a surgery until the results come back because that might alter my decision. Little Dolly Girl (I think her name was Kayla) drew up a family history chart and we went back through all my parents, aunts and uncles, and up to my grandparents to get cancer histories. Good news, Eitemiller and Haisch families! We are a good-looking group on this chart! Aunt Jeanne and Aunt Fae were the two red flags, but there is not a strong genetic marker for cancer of the "lady parts" so the test will most likely come back negative. I qualified for financial assistance, so the test was no charge for me, so we went ahead and ordered it. This is another specific area of prayer, that my test would come back negative, and not positive or inconclusive.

I don't have a specific timeline just yet, but the surgeon seemed to indicate that I would be able to finish the school year out before starting treatments. (Another specific area of prayer)

OK, so chemo.

I really don't want to do chemo. And it's not just because I have awesome hair. I just have to believe that with the millions of dollars and the decades of research that have been put into this disease, that there is not a better answer than dumping poison into your body to try and heal it.

I know there is a lot of information out there on the interwebz, and believe me, I will be doing my research. I am starting here, (I have a bunch of other pages marked, I just haven't gotten a chance to read them yet), and have decided to alter my diet drastically in my own personal prescription to fight off the cancer naturally. I think I would like to do surgery first, and then revisit the chemo idea after recovery... but I don't know if that's an option for me. I meet with the oncologist next week.

I think this was the thing I was most frustrated about when I left. I had been doing research all day (I know. That makes me an expert, right?), but no one would listen to me. They talked about some of the auxiliary therapies like acupuncture and enemas and stuff that they offer there, but I wasn't really hearing anyone talk about supplements and nutrition. I asked if I could please see the dietician sooner rather than later in the whole process.  Usually, she doesn't enter the picture until right before chemo starts.  I don't know nearly enough to make these changes for myself without some coaching, and it's really hard to change your diet so drastically without someone to hold you accountable.

So, I guess I was just kind of crabby when I left today. Mostly because of the whole chemo-as-a-foregone-conclusion kind of thing. Which I TOTALLY expected, so I'm not sure why I'm acting so offended.

There are a lot of good things here: Stage 1, probably no lymph nodes, probably not genetic, and no rush on the surgery.

I have a lot to think about and process, but I wanted to get an update out to you all.  I cannot believe the number of hits I've had since I started this page less than a week ago! Almost 3,000 before I post this entry. You guys make me feel so loved. I think everyone should get a chance in life to know just how much you mean to people. It really makes you all weepy.

~Amy

7 comments:

  1. Well, so far, so good...Stage I...that's good...probably not lymph nodes...that's good...hormone receptor positive - if I'm reading the info correctly, that sounds like it's good news in that medications can help deactivate the cancer cells/stop them from spreading? Also good. I'm sure that the waiting has GOT to be the hardest part...If you're anything like me, I'd just want it gone, out/off gone, done...over...move on with my life...so...I guess my prayer for you today is patience...the answers will come, the decisions will be made, but likely not in the time or order you'd like them to be...so I pray for patience and peace as you wait, knowing that the answers will come...your strength is inspiring, Amy...I'm so proud of the grace you are demonstrating to us...and like I said the very first day, we're all in this together with you, every step of the way - the good, the bad, the ugly...and we expect you to share the good, the bad and the ugly...you don't have to be strong for us...be angry, be sad, be scared, be funny, be weepy...we'll be strong when you feel weak...Julie Bedow

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  2. Amy, so thankful that you had good news today. Praise the Lord for his continued goodness! As I read your entries, it's refreshing to see not only a sense of humor in the situation but also honesty. Sharing exactly how you feel and what you're struggling with let's us know more specifically how to pray for you. In regards to your final paragraph, with my experience, knowing how much people cared was so humbling. It was certainly nothing I had ever experienced before or expected, but knowing that people all around the world were praying for me and supporting me gave me such peace. My prayer for you, as you continue this journey, would be peace--peace during each step, comfort knowing that you are cared for, prayed for, and loved by so many people.
    Crystal

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  3. Friend, my word escape me..... I'm sorry you are walking down this path. I am praying. That's all I really know to say (and you know that is short for me). Hey - I have a friend who had breast cancer, and I believe she did some stuff with food for sure... can't remember on the supplements part - let me check with her. Who knows - maybe someone who knows someone on this blog can help you with your thoughts.... <3 and prayers (wish there were a coll symbol for prayers)...
    ~Shanda

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  4. Ok, so here's some info from the nerdy science girl who's been to the rodeo a few times....granted not the booby rodeo (can we make that a shirt??) but I mean all these rodeos have similar rides. In any case, your oncologist will likely discuss your status as triple positive or Luminal B (from my understanding...but remember I'm not a Dr that helps people :) ). That means they will likely suggest post surgery/chemo to give you endocrine therapies. Herceptin is the/a drug they give to block the HER2 (so it will stop working and die) and I believe it can be given at the time of chemo depending on the protocol, and Tamoxifen is a drug they give to block the estrogen receptor. The nice thing is these endocrine therapies have few side effects (comparatively to the rest of the ...rodeo?! I'll stick with my theme). There are other classes of Estrogen blockers but they usually aren't given to women of our tender age (even if your student Dr. was 12...we aren't that old). Secondly, I can't discount the ketosis/low carb diet...I mean there is a thesis out in the world with my name on it using glucose modification in treating cancer cells. However, I would strongly agree (as you have requested) that you talk with a nutritionist before making drastic modifications. I could probably go in to a TON more about the Adkin's diet etc. but I will end my small diatribe here. If you want give me a call, shoot me an email, put me on speed dial...whatever you need lady. If you want to chitchat about the rodeo let me know, it's been a while since I've had chemo so things have obviously changed (hopefully for the better) but let me know. Sending good thoughts to you from me and via the creator.

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    1. You might possibly be the smartest person I know. I'm so glad we grew up in the same neighborhood! :)

      Also, though I live in SD, I'm not really a big rodeo fan. Maybe Mom would like a Booby Rodeo shirt. I need some kind of artsy/ musicy analogy. Would you get on that? :)

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    2. Your mom would love the bobby rodeo shirt...hmmmm. Perhaps you need a theme song...oooooh we'll work on that!!! No but seriously, I'm not the smartest person you know I've just spent a LOOOOOOONG time learning a lot about a few things (which this happens to fall under...) so really after talking with the oncologist let me know if you need me to do any web based research or make a few calls to get some info.

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  5. Hi Amy
    I tried to post the other day, but it went south! I "met" you through your mom. We volunteered together in the Two Hearts Horsemanship Program at Sunshine Acres Children's Home in Mesa, AZ. She is a wonderful lady - and by the way - loves you a lot! Please know that there are many prayer warriors out there for you and your family! I'm so joyful for your positive news!! I pray that you will have peace, comfort and total healing. Tell your mom "Hi" for me. Maybe next year, you and your family can come and visit them in Mesa. I would love to meet you! God Bless!

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