Oh…the Irony…

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Today is world Cancer Day.  I didn’t even know there was such a thing until a couple days ago when I saw a link for Chevy flit across my FB wall to color your profile purple http://www.chevrolet.com/purple-roads-world-cancer-day.html?seo=goo_|_GM+Superbowl_|_1744%7C1751%7CIPUS%7CAU%7CG%7CS%7CB%7CA%7CE%7C+GG-LS-Chevy-SN-B-Exact_|_Superbowl_48-Superbowl-PYP_|_purple%20your%20profile

So, of course I did…

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Then I figured I should acknowledge a few people on FB, Twitter, and most importantly, here. 

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If you can’t read it, it says…How ironic that the day I was given the news 5 yrs. Ago on 2.4.09 was also World Cancer Day.  This is such a huge , milestone year for me and laying in bed tonight, I thought I would revisit the blog post I wrote about that day.  Those of you that have been with me this whole time…thank you for your continued support.  Those that are new friends, thanks for coming into my life.  My life…wow…5 yrs. Ago this time, I honestly didn’t think I would still be here.  I can’t possibly imagine you could possibly imagine what it’s like to get such a wake up call…to your LIFE…unless you have been faced with this insidious disease.  I am not the same girl I was before this news hit me…becuz… ALIVE ♥

And for those of you that held my hand in spirit through my blog…thank you…to all of you…too many to list but you all know who you are.  Your hope and prayers kept me going. 

If you would like to read my post from that day, here it is. 

No News is Good News…Right?
http://wp.me/prf6k-N

So much has happened since then.  Won’t you join me in dusting off this familiar place and breathe some new life into this very special place of mine.  Oh, and comments are always welcome below 🙂 

P.S. If you dont want to miss anything…be sure to subscribe!

I’ve missed you all and can’t wait to hear from you soon!

Shame on You!

I did it again. I came back to my blog, said I was ready to write again, then got yanked away. I’ve fallen into old habits of getting pulled in too many directions. Being spread too thin. Doing more for others than I do for myself. I know this and can recognize it, but always have a hard time of peeling back again to make my life simpler, my mental state saner, and my overall temperament less stressy.

I’d love to catch everyone up to speed on what’s been going on around here but right now I need to get something off my chest (no pun intended). There is a very valid reason for what has kept me away from this comfortable place of words and thoughts and inner reflection…and that reason came from a complete stranger in the form of a comment left for moderation on this blog. It took me by such surprise, and quite honestly, my initial reaction to it was a knee jerk and instant recoil from something I love to do or a place I like to frequent.

I know when you put things out into cyberspace—it’s out there—there’s a permanent record—somewhere. I know that there are some creepers that have nothing better to do then surf the web, spend hours of time looking through public content (and that’s what this is once you hit the publish button), and cutting and copying to their heart’s content. I guess I’m frustrated by the endless possibilities that await certain sick minds and even though I have used this as a source of purging and regrowth, I have done so willingly in an attempt to help someone else. In saying that, have I actually aided certain stalkers in their quest? I have spent countless hours writing and then deleting—often times by accident—and then rewriting again. The writing portion has always been the focus of content theft for me and never, in my wildest dreams, would I have ever thought that there was someone out there stealing my photos. Not just stealing them, though—actually laying claim to the individuals in the photos! I will definitely be checking into my Flickr account settings and going over the privacy settings. However, it makes me sad to possibly do this. Isn’t there a foolproof way, an absolute of sorts in the realm of the wide world web with regard to this type of theft?

As I began this blogging journey over two years ago, I found quickly that there were several key elements you should have on your blog and one of the most important I have found is the spam filter for any incoming comments. It quickly weeds out the real comments from spam based on certain code sequences that are tracked. It has moderated hundreds and hundreds of pieces of spam—I only wish I received that many real comments! Lol! Before I delete them permanently, I always peruse through them just in case something gets put into the wrong inbox. I have received the most perverse and disgusting mail through this blog and I’m sure that much of it is generated based on the tag/key words I use in many posts. Many of them are from overseas and they are the strangest things to see because they are all symbolically coded in other languages of which I have no way of translating. Through the real comments, I have made friends around the world with women that have gone through similar or are facing similar situations as to what I went through. Some stop by from other friend’s blogs, some are friends through Facebook or my other writing hotspots and as with any new comment that comes in—whether its from someone I know or don’t—It is always placed in que to be moderated. Who knows what kind of sicko or fanatic would actually pop in just long enough to whip off something nasty. So, before any of that can be read by my loyal readers, I try to spare the filth of others.

Last month, though, I received an email stating that a comment was waiting for me. I was so excited! It had been months since I had written or quite honestly paid much attention to the blog—(I’ve been too busy living :)). When I opened it up to read it, I was immediately saddened and disgusted. My fear of some sick person out there has come true. I’m not sure if this is just something I should expect, or if there’s actually something I can do, but I will post here for you the email I received and if any of you have specific advice—don’t hesitate to leave a comment.

Hi Christina,

I just wanted you to know that a man supposedly named Cliff Grant is claiming the picture of your daughter Jordan with the Harp from christmas 2009 is his daughter – I had been in contact with this person through a dating site and when my suspicions got the better of me I used tineye.com to search the picture he had given me – which is your daughter Jordan!!! You may want to put some copyright channels in place to protect your children.

Good luck with your battle!!

Regards

Melissa

Now, as far as I know, this particular person could also be spamming me with the provocation of luring me to the tineye.com website. I am always hesitant to open web sites since I have suffered the agonizing feeling of despair each time I receive a virus that completely crashes my system. So, I checked it out on the library’s computer. Lol. I know—not very nice should it contain a virus, but I figure they probably have better firewalls then I do. It seemed like a legit site. I just couldn’t do a reverse search on any pictures at the time. I’m curious if any of you have had the opportunity to use this site, if its real, and really works. My mind started racing and I had all these questions like:

Which dating site was it?

I wish I was also given more information as to whether or not this person, Cliff Grant, was reported to the key people in charge of clientele on this dating site.

I wonder what measures they have in place as consequences for misrepresenting yourself.

I wonder if that was his real name.

I wonder how many other women he’s done that to.

I wonder if he’s used more than that picture.

I wonder if he’s disgustingly photoshopped my pics.

I wonder if he’s a con artist trying to bilk unsuspecting women out of their money.

I wonder if he does this with more than just my photos.

I wonder if anyone else who writes a blog and puts personal family photos on it realizes that there are people that do this.

I wonder how I can backtrack this guy, find him and get him to stop.

I wonder if I’ll need a lawyer to discuss copyright or cease and desist orders.

All this comes on the heels of a contest I had with my daughter where we sat at the computer bored one day checking out Youtube videos, seeing how many people on FB worldwide have our same name, and googling bizarre stuff. We decided to google ourselves. Have you ever done that? Unless you have a one of a kind name, you’re bound to find something that google has found on you thanks to their search engine optimization. Out of all those names, though—how many actually apply to you? My daughter and I started laughing our heads off as we counted higher and higher—page after page—for entries dealing with me. I stopped at page 40. I’m sure there was more. As we scrolled through laughing at this or that, I stopped on one particular highlighted entry. It was an excerpt of a blog post from a couple years back titled, Race for the Cure . I clicked on the link and was horrified at what popped up onto my screen. There was my entire post on the front page of a triple X rated porn site with images flanking each side and top and bottom. WTF! Seriously, what in the hell was that about?

I know there are some freaky people out there that have strange fetishes, but what could this site possibly want with my blog post dealing with the Walk for the Cure? I then wasn’t sure I wanted to know. I tried desperately, risking virus and Trojan horses, to find a contact on the site, a name of some company or a subscription box that might have a field where I could leave a comment to TAKE THIS POST OFF THEIR SITE IMMEDIATELY!!! I found nothing. I do not know where to go or who to talk to about this and it got me so upset that I have stayed away. I’ve contemplated shutting the site down, but it has served a source of comfort and inspiration to many—including myself. This is a clear breach of copyright since I did not authorize the use of my content in this manner. I try to joke around about it, but I really don’t find it a laughing matter and if someone were to google me, I really don’t want anything I’ve worked so hard for being lumped in with something of this nature.

So, I’ve sat silent. For months. I have so much to write. I have so much to tell. I have so much I want to share with you all. I’m just stuck on this issue. Has this happened to any of you? How did you resolve it? What advice do you have for me?

I know that there are individuals that would love to use electronic content for their personal gain, individual pleasure, or twisted misrepresentation. It was a worry of mine when I first configured this blog. I researched how to protect my content and kept coming up with a simple solution which consisted mainly of a copyright badge on my page. I’ve had one in the sidebar for a couple years now and even though its there, I still wondered if it was deterring others from claiming something they found on my site as their own. I found a site once, and put a widget in the sidebar for Copyscape. It’s a site where you could enter a phrase from a post or the entire thing and it would do a search of many search engines to see if there were any hits that came up. I think it’s the same kind of tool that professors and teachers use to make sure students aren’t plagiarizing from an uncited source. I suppose I will need to be more diligent and proactive when it comes to what I’m about to publish.

I guess I am most disappointed in the moral decay of many individuals. I’ve tried to do something that has been hard for me to do, but I really force myself to do it. I tell myself that the individual posing the threat is obviously in greater need of prayer than myself. And then I say a small prayer. Many times they are sincere. Many times, truthfully, they are prayers that are…ahem…asking for karma to intervene. Thinking about this “Cliff Grant”—I’d have to say if he just absolutely felt like he needed to misrepresent himself with a fictitious daughter—at least he picked one that was talented and beautiful. In the same breath—BACK OFF, she’s mine. And to the porn site that feels the need to bait their web page under the guise of my blog post—I’m not sure I’m thrilled about this particular form of advertising, but since it’s free—hmmm—I’d like to say thanks? But yeah, NO. BACK OFF, it’s mine.

Let this serve as public notice that I am demanding you remove my content from your site. I will pursue this until it is removed and if you think I’m not a threat, you may just wanna make sure you got your big girl panties on. I have fought cancer and can tell you first hand that fighting you will be a cakewalk for me. To all those that are tempted to reprint portions—I’m an awfully cool person to deal with—all you have to do is ask, and then cite me. Let me know what you’re up to. Link to my page and I’ll link to yours. But to just take something without asking and to use it in a way that is grossly misrepresentative of yourself or my name—I’d like to say very clearly…SHAME ON YOU!

(Just prior to publishing this post I checked one last time on the WordPress support page forany information regarding help with content theft and this is what I found. I remember looking at this a couple years back, but haven’t reviewed it lately. I will go back into all my photos and start watermarking them. I will also get a free license and take into consideration many of he other points listed on the website. Even if you don’t have WordPress for you fellow bloggers out there, this is a good place to start to get information. if you are facing a similar situation)

Pink at the Rink

This past Saturday, November 6, 2010, the IWireless Center here in Moline, IL turned the rink pink for a night for Quad City Mallards hockey game to raise awareness for breast cancer awareness. Anyone that has or has had breast cancer was eligible for free tickets. Since I have only ever been to one hockey game in my life, and since my kids have never been, I quickly contacted Genesis to be put on their mailing list. Here’s the clipping from the Quad City Times Online paper:

“Pink In The Rink” will benefit Genesis Foundation for breast cancer patients
Posted Online: Oct. 04, 2010, 12:46 pm
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Press release submitted by Quad City Mallards

DAVENPORT, Iowa — Oct. 1, 2010 — The Quad City Mallards, Genesis Medical Center and Cumulus Media will team up to support breast cancer awareness with “Pink In The Rink” night in the I wireless Center on Saturday, November 6 when the Mallards host the Bloomington Prairie Thunder.

The Mallards’ players will wear special pink jerseys during the November 6 game. The game-worn jerseys will be auctioned after the game with proceeds benefitting the Genesis Health Services Foundation.

“We feel privileged to be able to work together with Genesis Health System and Cumulus Media on Pink in the Rink Night,” said Mallards President Chris Presson. “The chance to aid a cause as important as the Genesis Health Services Foundation is one we are very happy to embrace.”

The first 1,000 fans through the doors will receive pink caps and breast cancer survivors will receive free tickets to the game, as supplies last.

Cumulus Media will provide media support for the event. “We are honored to be part of such a great event and important cause”, said Cheryl Riley, Market Manager for Cumulus Media. “Every ticket sold thru our media efforts will result in a $2 donation going to the Genesis Health Services Foundation, so we will be reminding our listeners to support the November 6 game.”

There will also be breast cancer information available at a concourse display throughout the evening.

“This year Genesis will treat 300 women with breast cancer and will provide nearly 30,000 screenings or diagnostic procedures,” explained Flo Spyrow, Vice President, Genesis Health System. “Breast cancer remains one of the most important women’s health issues facing all of us in the future and having the resources to provide access to screening for all women remains a goal of Genesis.”

Patients of the Kenneth H. McKay, M.D., Center For Breast Health have access to the latest diagnostic and screening tools in the region. The center also provides women with a skilled team of experts in various specialties, including family practice, radiology, surgery and social and emotional support.

Genesis participates in clinical trials on an ongoing basis. Those trials allow women with breast cancer to receive the latest treatment while being able to remain close to their homes.

“Genesis and the Quad City Mallards organization have been partners for many years. The loyal fans of the Mallards have allowed us to raise hundreds of thousands of dollars to support the Genesis Health Services Foundation and its projects that benefit patients throughout the region,” said Craig Cooper, Media Relations Coordinator, Genesis Health System. “We look forward to this next partnership that should be a lot of fun for fans.

“We hope the entire i wireless Center looks pink on November 6 to again raise awareness for the issue of breast health.”

It was just a short year and a half ago that I would have given the middle finger up to anything that would try to make me part of some elite club. I didn’t want to even associate myself with the disease, was pissed as hell that I had it, or that others would also hear those words in their lifetime. I have worked through a lot of my anger–slowly and have realized a couple things. Bad shit happens to Good people. Period. Sometimes life isn’t fair. Deal with it. Man up. Quit whining. The only way for me to do that was to dive back into where I just spent a good year clawing desperately to get out. It’s that all or nothing part of me I talked about in the last post. So, when I hear of local events that promote breast health–my ears perk up. When I see a pink ribbon somewhere, in the paper, a magazine, a billboard, or on a pair of socks, shoelaces, shirt or even tattoed on someone’s skin–I pause. If it has to do with a person–I go up to them and talk to them. I ask if they wear that badge in honor or memory of someone. I listen. I watch that person’s eyes light up for a moment in gratitude that someone would want to hear about their loved one. Sometimes, that’s all a person needs. That way, the memory of that loved one has not gone unnoticed.

Anyway–I received my tickets and began making plans for the family to have a night out enjoying a sporting event (one that we wouldn’t normally have chosen to go to). I was excited to see the rink turn pink like in this picture:

I went shopping at our local Goodwill store for pink shirts for everyone to wear. I love that place and sometimes its a curse that I live so close to it! I almost always find exactly what I’m looking for–for pennies on the dollar. This trip was no exception–super soft sweater for me, a fleece pullover for Justin and a brand new (tags still on) pink Ralph Lauren Polo with navy blue trim on the sleeves and collar for Jeff. Jordan said she already had something so for less than $10, we were now outfitted to go pink at the rink! Once I got home, I learned that Jeff was not going to be going with. Don’t get me started…I mean, I know he doesn’t care for hockey and that he had a ton of work to do or homework to do (I sent him back to college this semester on my dime after I took the semester off so), but I have never been into hockey either and that’s not what it was about. It wasn’t even about the pink thing–it was just an hour of family time, and I had secured free tickets for all of us and now he didn’t want to participate–for just an HOUR. I was bummed, but I wasn’t going to let it ruin my night out, so we went without him. We actually had a really good time, but we were all bummed that our ice was not pink.

Wish the ice would have been pink!

Justin forgot about wearing a "girl's" pullover once the popcorn was bought!

When I go to events like this, I am surrounded by women and children and families big and small that have been affected by cancer. There is an unspoken acknowledgement of each other as we briefly meet each other’s gaze in passing. Some nod, some smile, some look tired or worn out from the chemo, some are happy to be enjoying a night out with their families, some are oblivious, –but the magnitude of the cause remains the constant. Silent auctions for team member’s pink ribboned emblazoned jerseys were going on, T-shirts were being sold, information booths stood vigil. I was happy to be there with my kids. I was happy to have gotten free tickets. I was happy to see the look on my little boy’s face when I bought him own LARGE popcorn–his very own–and he squeezed my hand and told me, “Mommy, I love you soooooo much! Thank You!!” That’s all it took–for him to forget the argument we had had earlier about wearing a pink “girl’s” fleece pullover despite me countering with “Lots of guys wear pink!”. It was all it took for me to be reminded once again, that I am just exactly where I am supposed to be in this circle of life–sitting in a nosebleed section trying to get my camera to focus on a macro mode, hanging with my kids on a Saturday night. I just wish the other two members of my family would feel the same and would have been with me as well, but I take what I can get these days and try to feel grateful for those moments when they come. I just wish they’d come more often.

1 in 8

After months without posting, I dived into my blog once again this past week. The peace writing brings me along with the tinkering of widgets, layouts and uploading pictures is so meditational for me and that is huge in terms of quieting my brain. This was originally intended to be an outlet for me. A way to express myself. A way to come to terms with how my life had been flung into a different trajectory almost mid-course. It was a visual way for me to organize my thoughts, fears, dreams, hopes, goals, and somehow compartmentalize them in such a way that I could manage them all without losing my mind. Cancer has a way of doing that to a person. It is an insidious snake that wraps itself into every crevice of your being and makes you doubt everything you ever thought to be safe or predictable or comfortable.

What I found through this cyberjournaling is that I was not the only one feeling this way. I was not the only one going through this. I was not going to be the last. I made online acquaintances that stretched out their arms across thousands of miles, oceans, and continents to befriend me, to lift me up, to support me, to walk in spirit with me. I found friends near me that were willing to do the same. In this past year, I have become one of those spirit friends myself to many women both locally and far away. I have tirelessly advocated for early detection with my growing number of friends on facebook. I have reminded both the women and men in my life and those I randomly run into weekly, if not daily, to take care of their boobs. I have passed out self-check breast exam flyers to random strangers. I have done things in the name of breast cancer awareness and I have made it known to all that if you EVER feel you are having a scare, or you need information or you want to talk or you just need someone to pray for you or with you–I will be there for you.

I have had women I barely know and many I do contact me this past year. I have talked into the wee hours of the morning with strangers across the country. I have facebooked and I have messaged and I have emailed back and forth with others who are in the middle of a scare. I have begged and pleaded for everyone to get a mammogram–and to NEVER blow it off, and I have just sat and listened and cried with some who have been diagnosed. I never really thought in the beginning that I would later go on to become someone that would be a source of comfort to another that was fearing her worst nightmare coming true. I never thought that there might be a former high school enemy that would be inspired to go get checked for the first time because of me or become someone I actually appreciate now that we have grown up. I never thought that people would really read this blog. But, all those things have happened and continue to happen.

When I submitted my post a few days ago after a 5 month hiatus, I was astounded by the irony of what happened later that night. I was reminded once again that because of me putting out there the good, bad, and ugly, a woman somewhere would also be reminded that they could call me–to talk, to cry, to vent, to plan, to question, and to ask questions. I never thought I’d get a call anytime soon. But I did.

A long-time friend of mine messaged me through facebook. The urgency in her tone led me to believe that something was very wrong. This same woman began reading my blog from the onset and two weeks after I launched it about a year and a half ago, she found herself thousands of miles away going through a similar scare. She found me then on facebook and we talked and talked and talked. Her scare was just that at the time. I have learned that if you are a woman and you have a scare that is in need of biopsy or MRI imaging or you are told you have dense breasts or there are just a few “normal” looking calcifications showing up on a mammogram, you should be diligent in your self-care. My friend has done just that. However, her followup mammograms have been proving to be more questionable. Without telling many people, she went in for the suggested biopsy last week. She thought nothing of it because she had been told since that first scare she was fine. She wasn’t nervous at all.

She has just received the news. She listened to the woman over the phone tell her those words that change everyone’s life when they hear them. “You have breast cancer”. It wasn’t 24hrs. after posting my blog that here again was my friend–now facing the same form of cancer I did–DCIS–Ductal Carcinoma In Situ. I stopped everything, didn’t care if I was an hour late to a meeting, because I knew I was the person she wanted to talk to. I listened to her and I shared with her–the tears silently streaming down my face. She will be seeing her surgeon tomorrow. I am asking for prayers please.

Yesterday–I couldn’t help but feel a heartwrenching ache in my gut. I was mad. Mad that a cure hasn’t been found. Yes, early detection is the key and there are many pieces of health news always swirling around puporting to be something for you to do in order to decrease your risk of getting the disease. But ya know, I did most of those things and I still got it. Sometimes, no matter how you live your life, manage your stress, what you eat, or drink, or how much you exercise–sometimes you still get cancer. Sometimes it’s just predisposed in your genes and you don’t know when that snake will raise it’s head to strike, but it doesn’t make it any easier for me to swallow. That pill still gets lodged in my throat and it makes me really mad. My status updates since finding out have been filled with angst. Many of them reminding everyone that 1 in 8 women (or men) will be diagnosed. Let me rephrase that–1 IN EVERY 8 INDIVIDUALS WILL HEAR THE WORDS–“YOU HAVE CANCER”.

I took stock of just the people on my facebook friends list and realized that many of these women had already had scares. A few had already been through their cancers. I wondered how many more in just that list alone would have to go through that. I put out a request for everyone to stop and go through their own lists and to take a moment and pause for a prayer for each person on their list. I might seem melodramatic to some and that’s ok. I get it. They just have never had to go through what I did and there is power in prayer, I do believe that. 1 in 8. That is too large of a pill for me to swallow. I sometimes don’t know what else I can do though. I have wondered what else I was meant to do. Maybe I’m doing enough. Maybe I could do more.

Maybe we could all do more. Maybe we could all just take the blinders off and stop trying to pretend its not one of the leading killers for women. Maybe those that are scared of having the pancake masher hurt them will be reminded that having your boob CUT OFF hurts more–emotionally, psychologically, physically, etc. All I can do is put it out to the cyber world now and scream!! GO GET YOUR MAMMOGRAMS!!!!! Maybe we’ll find a cure. Maybe…Maybe…Hopefully…I do hope. For now, “L”, you are in my heart and prayers as you embark on this road. Good luck tomorrow, dearheart. I am with you in spirit.

I Run for Life…

It’s that time of the year. Race for the Cure. I have been looking forward to it for a year now. When I walked my first race last year, I had just undergone my first chemo treatment and the start of my second; I had suffered respiratory arrest due to the severe allergic reaction I had to the chemo drugs; and I had lost all my hair. Slowly, but surely, though, I walked that route surrounded by a sea of pink. Overwhelmed by the shear magnitude of the event (my first ever), I walked proudly with tears streaming down my cheeks and told myself I would be back again in 2010. When I crossed that finish line, I pulled my signature Superstar move and although I felt like a winner, there was a small seed of doubt. Would I make it?

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Superstar!

It has been a whirlwind year–at times moving at warp speed and at others, creeping along at a snails pace. For months now, I have looked forward to walking this race once more, crossing the finish line, and pulling my Superstar–only this time with the assured confidence that I had/have beaten this disease. Is there any doubt? Yes, a smidgeon. Enough to pull me down every once in a while, especially when I get sick and my mind starts to race through the “what if’s”. I came across a few pics from right after the race last year. Pictures I was too embarrassed by to put into my Flikr photos with the rest. When the pictures were taken, I was sitting on the front porch. Jordan came along and snapped a couple pics of me. It seems like yesterday when I think back. I was caught up in my anger then and it’s written all over my face. My eyes look sooo tired and expressionless. The worry lines had been chiselled deep into my brow by fear. My chest was non-existent and my hair–well, see for yourself.

Lost in Self-Doubt

She told me to smile. “Just Fake It”, I remember her saying. So, I tried. I really did.

“C’mon, Mom…you just Raced for a Cure…you should be happy!” I was. I smiled. I guess it wasn’t convincing enough. So, I tried again…

It was no use. That earlier feeling of euphoria while walking had been replaced with the weight of the world. I attempted one last try at a decent picture–one full of hope and determination–hell my before and during pictures in my Flikr photos are absolutely night and day compare to just a few hours later. (click on “more photos” in the sidebar to view last year’s 2009 Race for the Cure pics), but it just falls short.

I remember thinking how badly I needed a nap. Right after the race last year I worked at the Arsenal for several hours and then went on to piano lessons. When those pics were taken, I was exhausted and you can see it in my eyes. For the most part, these days, my head is in a completely different place than it was a year ago. Thank God.

I really wanted to go this year. I planned on going. I was all set to assemble Team Superstar and proudly walk with my fellow sisters. Then, I got a call, from someone that gave me some news. Nothing bad, in fact, very humbling news. I am being awarded something (I can’t say anything more until afterward). My presence was being requested in Iowa City to accept the award–on the same day. Of course, I felt honored, and after the surprise of the call began to wear off, I realized the event was on this Saturday, June 12, 2010–the same day as our local Race for the Cure. I wondered if I could actually swing both, but it really didn’t take long to make up my mind. I would probably only get this honor once in my life and the race will be here next year. So, I’m going to Iowa City on Saturday. My family will meet me up there to video. I’ll upload over the weekend so you can all share in the news.

For all those planning to walk or run in this year’s Race for the Cure–do me a favor and keep me in mind–even scribble my name into a corner of your memorial badge if you feel inclined to do so. I’ll be there walking in spirit and to show my support–I dyed my hair this past week–platinum with fuschia tips in the back. It has been cut in a way that shows off the tattoo I got last year, and as I promised, I will be going back really soon to have the word “Survivor” added underneath.

Showing My Support

I also found a video this past year that has gives me the chills each time I hear it. I have made the song my ringtone on my cell phone and I thought I’d share it here for all of you to enjoy as well. For all my sisters who are fighting this fight, have won their fight or have lost their fight, I will be running for you…soon.

I’m Seeing Another Man…

I’m seeing another man. In fact, I saw him twice last week. I also got to spend time with his partner and we discussed a possible threesome for later in the week…:)

Did that peak your curiosity? Perhaps I should clarify before the rumor mill gets to churning out the latest gossip and sends everyone in the family into a tizzy…

Due to ongoing pain around the tooth I had rooted out back in May, I found myself back in the hot seat at my new dentist’s office three times last week. Last Monday, I had the pleasure of meeting one more of the three dentists that practice at the Myotech Dental Center. This was not the same doctor that helped fix the 4 cavities and the root canal issue that had surfaced prior to starting my chemotherapy. Since Dr. Leppo was not in, Dr. Prudent and I made plans for me to return when both Dr. Leppo and Dr. Prudent could take a look at what was going on. I was again impressed with the unbelievable bedside manner of yet another partner in that business and it completely justified my decision to divorce the dentist I had been seeing for almost 4 years.

There have only been four dentists up until now in my life. My childhood dentist was imposed upon me by my parents. I hated him. There was something about him that really made my skin crawl. My girls call those kind of people–“creepers”. When I think about it–he was. I’m sure he was a nice enough fellow, but I didn’t like him and he inflicted a great deal of pain on me during my childhood and for that–he was out. Actually, he dumped me and opted for retirement. When his son took over the practice, I stayed for a while. The commute back and forth from where I lived in the cities as a young woman to the office in my hometown was just too difficult to make over a lunch hour though and so, I left him–without so much as a goodbye.

For five years, I worked for an eye surgeon in the Quad Cities. His office was right beside a dentist’s office. One day, I decided to start up a new relationship. I stayed with that dentist and followed him when he moved to a bigger office. As I moved further away, the commute began to take a toll once again, but there was a bigger problem. I hated his secretary–just couldn’t stand her–very bitchy and always looking down her nose at me–especially when I’d come in a few minutes late (as though she had never gotten stuck in traffic or dealt with kids in meltdowns). The doctor himself was great–kind, soft spoken, gentle, and would always set my appointments for the last one in the day because he knew that I was a freaker (thanks to dentist #1). He knew that more than anything, going to the dentist for me was a major psychological hurdle. He knew where the exposed roots were on the two molars that had housed headgear bands during the phase in my life when I wore braces and he always stayed clear from them with his sharp tool. I’ll never forget (I’m sure he won’t either) the day I went in to have a silver filling that had gone bad dug out and resealed. I was a mess–couldn’t stop crying, freaking out about the drill–I mean BAD. I was literally crawling up the back of the chair to get away. What should have taken about 20 minutes took and hour and a half because he would stop and start and stop and start to give me some time to brace myself. He never laughed at me. He understood and he was patient with my freak out. I loved him for that. I sent the office flowers the day after.

Unfortunately, I just couldn’t stand to go there and be harrassed by the secretary. I showed up about 10 minutes late one night and she went through the roof and said I needed to pay a broken appointment fee. I had already had a bad day and I told her to shove it. It would be different if I never showed up, but I even called in route to tell her I was on my way. It infuriated me so much, I divorced her–on the spot. That meant, though, that I was divorcing him too and that made me really sad because I had been with him for about 15 years and so had my kids. I decided to find something closer to where we had just moved. I took a coupon out of the Welcome Wagon basket that promised free exams for new patients. Without dental insurance–that was like winning the lottery for me and my family because those new patient exams are soooo outrageously priced. My family has been with this dentist for about four years, but we haven’t liked it. Even so, I just can’t justify spending over a thousand dollars to get everyone in for new patient exams, x-rays and cleanings somewhere else. So, we’ve stayed.

The dentist at the time was someone I personally didn’t care for. He was patronizing and I just couldn’t stand that about him. He actually laughed when I told him I didn’t know if I could take having any major dental work done and that I have been known to take more than 2 or 3 novacaine shots in the past because I could feel the work being done despite the anesthetic. He would look at me incredulously and then laugh. It made my blood boil. I felt as though he really couldn’t care less and to him you were just a meal ticket. The women in the office infuriated me as well and would pad the bill each time I went in for myself or my kids. I’m always VERY SPECIFIC when it comes to dental bills because it is such a HUGE outlay of cash each 6 months that I have to budget very carefully. The last time I went in for me I told them I needed x-rays and an exam–no cleaning, no sealant, no flouride, no extras whatsoever because I was just checking on a specific tooth (the root canal one). I’ve learned with these women to repeat myself and make sure they have made notations on my account so when I actually do come in, there is no mistaking what I want or don’t want done. With all the computerization that is in that office and with the prior knowledge all these women have of me and that I can get very bitchy when someone is trying to screw me out of money–you would think that there were red flags waving signaling my arrival that day. Nope.

When I went back to the examining room the hygenist took the x-ray and then proceeded to clean my teeth. I stopped her, asked her what she was doing, and she looked at me like she had no idea what I was talking about. I got up, walked out to the office and really got into the ladies business that is in charge of scheduling. I remember her telling me, “Well, if she started the cleaning, then we have to charge you for the whole cleaning and so you may as well get it done”. OH MY GOD–ARE YOU KIDDING ME? I went nuts. I even reminded her when I signed in that day. Do you think she could have transferred that information to the hygenist? I cancelled all other appointments for the rest of the year for the kids and myself–went ahead and said ENOUGH IS ENOUGH (actually, that was the nice version of what I said) and I walked out. Before I left, I did demand all the x-rays, afterall, I paid for them over the years–why shouldn’t they give them to me?

Months go by and I hadn’t found a new dental home. I knew that wherever I landed, I wanted it to be the last one. I wanted to feel like the people in the office and the doctors themselves didn’t just see me as a walking $$ sign. I knew I needed to start looking, but I knew I was going to have to have work done to that upper tooth that gave me such problems. It wasn’t until that trip out to see my grandmother in Virginia one year ago that I passed by a billboard sign in Kentucky that promoted a local dentist and said something about sedation dentistry. I thought about it the whole way out and when I got home I started looking over the yellow pages. There aren’t too many places that provide that service here where I live. I would have to either travel or call an office that I always thought was geared more for patients needing dentures and dental implants. I took a shot on the denture office and it turned out they do all sorts of tooth restoration work. They also carried the ZOOM teeth whitening machine and I had been dying to have that done for a few years. I remember when I first called for information and prices (before I was even diagnosed) finding out that it was in my best interest to be a patient–it would be cheaper. Sigh. That meant I was going to have to start shelling out some big bucks to have all that new patient work done before I could even start any work.

It wasn’t long after Christmas last year that I had that fateful mammogram where I was diagnosed with breast cancer. When that happened, everything else took a back seat and months went by before I was again faced with the need to see a dentist. Back in April, I was told by my first oncologist that any dental work that I needed to have done would need to be done prior to starting treatment because the risk of any infection developing while my immune system was being destroyed would not be a good thing. I knew I had one cavity and it was a bad one, so I went ahead and called this denture office to see about coming in. I explained my situation and they got me in–no problem–no waiting. The doctor that came in to talk to me was hands down the nicest dentist I’ve ever met. He and I talked at length about my nerves and then discussed the x-rays and the fact that I had not one but FOUR cavities! One was so bad it needed a root canal (that was the one in question for 6 months). He told me the price of everything and I think I stopped breathing.

Where in the world was I going to come up with about $2800 in a week (I had to have it done before my first chemo on May 7, 2009)? I don’t carry credit cards–I figure if I don’t have the money for something, I shouldn’t be buying it, but now was one of those times I wished I had an emergency card. To tell you the truth–I’d just be paying interest and minimum payments for God knows how long and that’s not how I operate. I hate being “payment-ed” to death. I was really going to have to fanagle this one. That’s when he told me he could spread the payments out and give me 90 days same as cash. Still a freaking lot of money, but I had to have it done AND I know of no other dentist office that will let you do that. It included the extra $500 to put me to sleep–totally worth it in my mind and the date was set. I had to have someone drive me out to the surgical facility and hang around nearby for a few hours because I would be loopy to drive myself home. I wasn’t completely knocked out, and I can only remember bits and pieces of that afternoon.

Taken 5-4-09 right before being put under for my root canal.

I remember the nurse putting the IV in my arm and turning on the medicine that would make me fall asleep.

I remember Dr. Leppo coming in and telling me everything would be ok.

I remember him giving me a warm blanket and turning on the TV.

I remember several times opening up my eyes and seeing him hovering over me with a lot of bright lights and he was wearing micro-surgeon’s binoculars. He would ask me reassuringly each time if I was ok.

I remember my jaw aching.

I remember when it was over, he got up and he walked around holding onto his back because he had been in such an awkward position for over three and a half hours.

I remember telling him that I really appreciated his kind nature.

I remember him smiling at me very warmly and saying, “That’s what I’m here for”. He told me I would need a crown on that tooth, but because of the placement of the cavity on that particular tooth, I would be lucky not to lose the tooth sometime in the near future. He said it was a 50/50 shot and he made the decision to see if the root canal would do the trick. He said it was just too bad and that the cancer was really beginning to do some damage to my teeth. He said the tooth itself was packed full of antibiotics before being sealed. He also told me to come back with any problems and to hang tough through the chemo.

I looked at him dead on and said, “I want you to know, that if I don’t make it out of this this year, that you were one of the nicest doctors I had ever met and I was very glad to have him as part of my medical team.” He thanked me and told me it was quite alright.

It was just a couple days later when I had that encounter with the woman in the wig shop (Just Own It) and that is when I made the decision to get my tattoo. I knew that would also need to be done prior to chemo and my white cells getting killed off and I knew that all the antibiotics from the root canal would help kill off any kind of infection a tattoo might inflict. Right before going in for my first round of chemo, I went back to Dr. Leppo. I hadn’t been able to eat anything in a few days. My mouth was so sore from being clamped open for so long. I knew the other teeth he had fixed would take some getting used to chewing on again, but the side of my mouth that really had the work done was in a lot of pain. I couldn’t take the Vicadin because I transport kids during the day and the Ibuprofen just wasn’t doing the trick. He filed some stuff down and I went home. It wouldn’t matter whether I had eaten or not, the day came for my first chemo and after that I wasn’t really that hungry for a while. After about three weeks, things calmed down and I have been good since then–until a couple weeks ago.

I started experiencing pain on both sides of my upper jaw again. It got to the point where I just knew I had to get it looked at. I was worked in right away and from the initial x-rays, Dr. Leppo’s partner couldn’t tell if I had cracked the root canal tooth (with all the stress over Jasmine this summer, I had forgotten to go back for the crown), or if the tooth had two roots and one wasn’t all the way tied off or whatever they do to it. I kept saying there was something else. On the tooth right beside it. It was causing me A LOT of pain. He told me to come back on Wednesday and together, Dr. Prudent and Dr. Leppo would take a look and try to determine what was going on. Sitting in the dentist’s chair on Wednesday, I started getting nervous. What if the tooth has to come out. Then I’m going to need a fake tooth. Geez, I already have a fake boob, my face tells a nasty story with all the worry lines of what our family went through this past year, and now I am losing my teeth. I’m just so sick of falling apart.

As I waited for the doctor to come in, I mulled over a lot of stuff. “It’s detail work now, smoothing out the kinks–ya know?” I said to myself as convincingly as possible. I began to think about it more along those lines and after a few moments, I made yet another decision regarding my aftercare. As I sat there and stared at the posters for teeth whitening, I decided I would be more specific with my New Year’s resolutions and I was going to be doubly specific with what I meant by “This year I’m going to work on Me” (my resolution last year–and way to generic and vague). As far as my teeth were concerned, I was going to fix my teeth and get them back into a stable state and then I was going to ZOOM them. A little cosmetic pick me up for the new year. If my smile were to dazzle everyone, perhaps they wouldn’t see the wrinkles that were forming, the gray hair that was just beginning to grow in, the extra 30 pounds I was sporting, or the cyclops boob that was expanding on my chest.

I know its all superficial–it’s not what truly counts–but dammit, I need a makeover in the worst way. I decided that…

I would go and get my hair re-colored–I’ve tried my new natural color for six months now and it’s just not happening. I’ve tried rocking the lesbian chic look and I’m not sure I’m pulling it off. LOL.

I’m going to take myself over to the little nail salon by my house and get a much needed mani/pedi.

I am going to commit to my nutrition program and stop talking about the extra 30 pounds–instead–I’m going to do something about them. I’m going to work my ass off–literally. I want to sign up to learn how to dance salsa. That should burn a few calories.

I’m going to get ready for my next surgery where the expander will be taken out of my chest and an implant will be inserted and I will have the other side lifted. I will contemplate a matching implant for the left side and a nipple reconstruction for the right side–something I’ve not been sold on yet.

I am going to go get a spray tan–for the hell of it. I always feel better with a little color in my skin and since I’m terrified of burning my chest in a tanning bed and not feeling it because all the nerves have been severed–I am going to go get airbrushed–just because. Period. Maybe they can spray on a six pack for me–haha–afterall, I’ve often heard that you should post a picture of your goal on the fridge to remind you of what your working for. I’ll just post my pic on my gut.

Lastly, I’m getting a massage. I need one. I’ve been terrified of getting one after what I was told back in February (that massage helps the drain the lymphatic system and that getting a massage when you have invasive cancer could possible send any free radicals bee-lining for a new host location to set up shop). I need one though–not want one–NEED ONE! Too much stress buildup over this year.

I need to stop pouring so much of me into everyone else all the time and carve out time to pour back into me. I just have to be a little selfish. Period. I’ve neglected me for too long. I had been expanding my mind, but forgot about all the other stuff and as you get older it’s important to look at the whole picture–or pieces of the picture start to get torn and that’s what was happening to me.

All of a sudden, Dr. Leppo walked in beaming. He was genuinely happy to see me. He said to me, “You made it!–That deserves a hug!” He came over and hugged me and then sat down to talk to me. I said, “I’m alive”! and we spent a few minutes catching up on how the year has gone. It was like talking to an old friend I hadn’t seen in years. Our attention turned to my teeth and we came to the conclusion that I really needed a whole new set of x-rays to see the damage that the chemo has done to my teeth.

“What kind of damage does chemo do to your teeth?” I asked.

“Well, it’s not really the chemo as much as it is the fact that chemo dries your mouth out and as a result of an extremely dry mouth, you don’t have the saliva needed to keep your gum tissue healthy which can also contribute to dental carries. Without saliva, there’s nothing to wash the sugars away” he said. Thankfully, I didn’t really experience any major side effects except having my hair fall out and going into respiratory arrest–nothing major–yeah, right–so, a few cavities is nothing in comparison, right? It still didn’t explain the pain, though.

I told him I had tried to schedule a new patient cleaning, exam, and x-rays, but was told the first appointment wouldn’t be until the end of March. He and his assistant looked through everything and because we had been hit with such a snow storm the previous week, there were many cancellations from people not wanting to drive into town. I was scheduled for the next day and as I left, I was told that there was no charge for my office visit for the second time that week. I couldn’t help but think that I had found my new dental home.

The next day brought a lot of anxiety for me. I was going to have to go through all the poking with that sharp little instrument I hate so much. All the scraping on my silver fillings that sends shivers through my spine and sounds like nails on a chalkboard. I was going to have to pray my new hygenist would be mindful of the exposed roots on the upper back molars and I would have to really hold on to the hope that I hadn’t cracked my tooth and the underlying problem was, in fact, due to something else. I couldn’t have been more put at ease. The two girls that worked on me were soooo nice! They answered all my questions about water picks, sonic toothbrushes, and teeth whitening. One talked to me about my cancer and asked quite frankly what I was thinking when I realized that I was really going to have to have my boob cut off (she’s young). It didn’t shock me, and I’d rather someone just come out and ask me those kinds of questions then just whisper behind my back. She asked if I was contemplating reconstruction and I had to laugh inwardly–did she not see this huge cyclops boob on my chest? Did she just think that was the silhouette of my real boob and since it overshadowed the actual real one that the left side must be the side I had cut off because it really looks pathetic over there now. Then she told me she just had an augmentation and that’s when I asked her a bunch of questions–especially–silicone or saline? That’s the question that weighs heavily on my mind these days.

Dr. Leppo came in again and looked through all the x-rays. Turns out I have two old silver fillings that are lifting up and causing me great pain since stuff is getting in there. They’ll need to be dug out and replaced. I hate the thought of it, but am secretly glad to get rid of all the silver in my mouth. It turns the color of my teeth gray and I hate it. So, I’ll get them replaced with enamel colored fillings and that should help the discoloration on that side. We’ll start working on replacing all of them since they seem to be really wearing out–but we’ll do it slowly and as I can afford to do so and about that root canal tooth–well, it’s still too hard to determine just what is going on with it, but I do have a cavity butted right up beside it and it could just be pain radiating throughout that entire area.

We talked about the possibility that once the cavity is filled, I find out that I’m still having pain and that it really is the root canal tooth. We talked about extracting it and having an implant put in. I freaked. I don’t know a lot about that–my parents always had partials–these things that they put into their mouths in the morning and took out at night to brush and soak. On their website their is a tiny flash video of how they use a screw to anchor in the implant–it acts like a metal root. “God, I totally do not want to do this”, I prayed and then quickly proceeded to put it into context–“Chris, you had your boob cut off this year. If you can do that, then you can handle a tooth implant screwed into your jaw”. Dr. Leppo reminded me it may not come to that. I was worried about how much that was going to cost. We never did get specifics, but he did say he would apply all the money I had paid for the root canal toward the implant. He told me he would stand behind his work and if it didn’t work, then he would reimburse me. Have I mentioned lately, that I love him? He knows just what to say to help get me through all this and for me it all boils down to pain and money. How much pain do I have to endure and how much is that pain going to cost me.

We talked about doing all the work at once and again I started to panic. We came to the agreement that I would get the middle sedation treatment–a pill that would make me super relaxed–and if I needed laughing gas–he’d give me that as needed. I’ve spent almost my entire adult life not relying on drugs or meds for things and this year, I have decided–they really come in handy! I wasn’t going to do it all at once, but it sure beats having to get super freaked more than one time. I also can’t stand to take off 2 or 3 afternoons to get it all done. So, we scheduled it for over a naptime where I could feed the kids and have a sub come in to help–mostly just to make sure they nap soundly. The effects of the meds should wear off farely quickly after the procedure and thankfully, my daughters will be home to help me out should I need it with the rest of the afternoon. The 29th of December is the day and I am not looking forward to it. I paid for half the visit (which was supposed to be $350 and they only charged me $219–another score in my book) and I made arrangements to put the balance with the total from the 29th (about $700) on a 3-pay again. Hard to come up with all that during Christmas, but I just have to keep plowing ahead. I can’t think about it or I’ll get stressed. It just bites because I just registered for school to retake a couple classes. These are on my dime. I just got that bill and now I realize why I signed onto that scholarship program (note to self–never let another class slide). Sigh. It’s always something. Anyway, here’s my super nice dentist and if any of you are wanting to make a switch to their office in Moline, make sure you tell them I sent you. They have an incentive program for referrals and one of them is a massage–I mentioned earlier how much I needed one, right?

Dr. Leppo

Full Moon Rising…

Full Moon Rising

I’m in the middle of working on 2008 AND 2009 taxes–ugh. A bazillion receipts that need to be poured over and a mountain of 2009 medical bills is now growing exponentially and is beginning to resemble a full-scale replica of Mt. Kilamanjaro. I hate doing this. I have software programs that should simplify this part of my life and great paper systems that claim to do the same thing, but what I want to do is anything but taxes so, I put it off. I absolutely hate bean counting. It takes me forever to catch up and granted, it’s my fault I’m now in a state of freak out, but I’ll get it done somehow–I’ll just be a lot more worse for wear over the next couple weeks. Hopefully I’ll make some headway soon and this mountain of paper will get under control in time for the holidays or at least by the time Jasmine comes home. Yep, you heard me…she’s coming home…soon.

As thrilled as I am, I am extremely nervous. I don’t want for old habits to rise back up to the surface, but I have to pray that she has learned a great deal of coping skills and she will rise above all the triggers that she will be faced with daily. We had the pleasure of spending our Thanksgiving with her while she earned a 4-day pass. It was filled with love, laughter, good food, and family–just what Thanksgivings are about.

Together for Thanksgiving '09

It was our biggest blessing–to see her alive and doing well and clean and sober and genuinely happy to be with us. That blessing could only compare to our family’s other biggest blessing–me–and the fact that I am still alive 10 months after being diagnosed with breast cancer. We built fires and roasted marshmallows. We stayed up all night long and watched movies. We laughed until we cried, lost our voices, and acted completely crazy as Jasmine joined Jordan and I on our psycho shopping sprees where we waited for hours in the freezing weather just to be pushed and shoved through the stores and become so discombobulated that we were standing in the wrong lines to check out more than once. She had never shared in the Black Friday tradition before and was absolutely shocked to see the chaos.

She wanted to surprise everyone for Thanksgiving dinner and so we dropped her off a block away from Jeff’s sister’s house and as we all loaded into the house without her, she snuck up several minutes later and burst in on the crowd. Tears flowed, cameras flashed and a young girl was reminded while she was sober how much she was loved. She met up with an on again off again boy who proceeded to stay with us over the course of the next few days. He’s leaving for the navy boot camp in just a few days and I knew they both wanted to see each other. I was reminded watching the two of them that out of all the boyfriends she’s ever had–I liked him the most. I also liked the fact that when he messed up he took my motherly bitching and came back apologetic and sincere. No matter what went down between them or whose fault it was–I couldn’t help but think I’d be pretty lucky to someday have a son-in-law that nice and down to earth. They are both still young and I don’t expect anything, but I can dream and I can always hope that whoever my daughter is lucky enough to find–will treat her with as much loving kindness as Dylan has. He was also instrumental in helping me find her in Ohio after she had been taken. That alone, in my book, earns him oodles of brownie points.

Jasmine & Dylan Thanksgiving Eve '09

Jasmine made it a point to find meetings near here that will help keep her on track and we set up necessary services that will help her deal with her lifelong struggles that she will face. Before we knew it, the 3 full days flew by and it was time for another day long trip in the car to get her back. She’s been doing well and pulling straight A’s once again, but I do worry that when she comes home, it won’t be as easy for her to stay focused. I guess all I can do is pray about it. If all goes well, she’ll finish up one more class–hopefully two–and then be able to come home in time for Christmas.

Jordan, Jasmine, and I loaded up the car last Sunday and we set out (late) across the state. We went out to eat for breakfast with Jeff and Justin beforehand so we wouldn’t have to worry about eating junk food the whole way out. What usually takes us between 5.5 and 6 hrs. took us almost 7.5 just to get across the state. We followed every holiday traveller out of Iowa in bumper to bumper traffic–both lanes–never making it over 60mph. Torturous for speed demons like me. I kept reminding myself that patience is a virtue and I needed to channel all the patience I endure daily with the children I work with every day. Easier said than done when your in that much traffic.

We stopped by a rest stop for a break and Jasmine came out looking for a woman that had left her purse on the back of the toilet. I saw the woman came out and thought, “cute haircut” when I saw her and then she left quickly. We peeked inside the purse and found her phone. Going through her contacts we found a Steve and called him to explain everything to him. He was able to contact her and her sons so they were able to turn around and come back for her purse. It was an expensive Kate Spade purse and it was filled with cash and expensive perfume and credit cards. It would have been so easy for someone to steal it and go shopping. I was so proud of my daughter wanting to do the right thing. We agreed to wait and I told her that this woman was so lucky it was us and not some crook.

When the woman showed up in her fancy Lexus SUV she got out and was totally snobbish. She wasn’t overly appreciative and she didn’t even offer Jasmine $5 for returning it. I know we did the right thing, and yes we did it for that reason and not for any monetary reward–but let’s be honest–some munchie money for the trip would have been nice. We were travelling in comfortable clothes and she sized us up and down and figured we were below her class and couldn’t be bothered with us. I could read it all in her eyes. I just hate snobs. This setback cost us another 45 min. and I just had to tell myself and the girls that it was 45 min. more we had with each other that day and it was a test to see if Jasmine would do the right thing. She passed.

Working our way westward, I knew that I had one more stop in store for us. There is a tower that sits on top of a scenic overlook along I-680W in Iowa close to the I-29N exit. I’ve always wanted to stop each time we have gone to visit, but the first couple times I missed the exit. Each time after that, Jeff was with and driving and couldn’t be bothered with such trivial memory makers. On this day, though, I was in charge. We arrived just as the sun was setting. The air was crisp and cold and even though we weren’t going to stay long, I wanted to take the girls up. I wanted them to look out over a very large area and see where states of Iowa, Nebraska, and South Dakota converge. I secretly hoped that as Jasmine and Jordan looked out across the countryside that they would see that the keys to their success are in her hands. I wanted Jasmine to see that her possibilities were endless and that she was lucky to be alive after what happened to her this summer. I hoped that she would see that her destiny was out there in this world and that with God’s grace she would find her way.

The back of the tower appears dark because of the setting sun.

[

The front of the tower was illuminated with deep golds and just beyond the tower, I saw a full moon rising pictured above).

When I saw my daughters up on top of that tower–I couldn’t help but think quickly over the past year about how far each of us had come.

Jasmine looks out

Jordan joins her sister at the top

Holding on for dear life

We had all battled demons and even though we weren’t completely free of their grips, we were still standing. We were still surviving. We were still breathing. I joined my girls at the top of the tower and looked out. I needed to practice what I preached and I needed to grab onto life again–a life I never imagined would turn out the way it had, but never-the-less still grateful to be alive to see my children grow.

The air was biting and the wind caused my stomach to flip flop. I looked out over the meandering interstate that had carried my family members back and forth for months as we visited our very ill daughter over 6 hours away.

I-29N

I-680W

I never knew what the end of this part of the journey would look like, but with a crimson sky I couldn’t help but think it was amazing and better yet, it was almost finished. I looked at my girls and told them I loved them and then we took a picture of all of us.

Freezing our butts off

A gust came whipping through the tower and scared all of us. I began to descend but got really scared and had to sit down and scooch down on my butt while my daughters laughed at their “chicken” mom.

Me--realizing how I hate heights

Stop laughing at me!

With the last burst of sunshine, I took a little video of my girls playing. When I see the opening picture of the video–before I even click play, I am reminded that they are still little girls. In the grand scheme of life and for how fast they are trying to get on with their lives or grow up before they are ready–it just reminds me that right now, this very instant, whether they like it or not–they are still little. It also reminds me of a more peaceful time in our lives. A time without the drama and crisis and heartache and devastating health issues that plagued our family this year. I can see my LITTLE girls in this picture–I can see the glimmer of hope that tomorrow holds limitless possibilities. The video is just pure silliness–and also gave me a shot of my second full moon that day.

This parting shot of Jasmine with me is priceless. I don’t think I’ll ever forget how hard she was pulling me toward her. I won’t forget her telling me sincerely and unsolicited–“I Love You”–over and over–something I hadn’t heard in years. I was glad that Jordan took the picture. I’ll treasure the moment always.

I Love You, Mom!

Jordan slept almost all the way home and the trip back was easy and much quicker–5.10 hrs. to be exact. I had never made the trip that quickly. There was noone on the road for miles and miles as I’m sure everyone was already home and tucked into bed awaiting work the next morning. I drove home listening to Christmas carols and thanking God for letting me live so that I may see to it that Jasmine would get the help she needed. I thanked him for not taking her home before me (at least this past summer this summer). I prayed for no more whammies. I told him that I thought I had managed the year as best I could and that I truly believed that I needed a break. I also wondered what lied in store for me and my family this next year.

Honestly, I need things to look up in 2010. I need time without crisis so that I can try to rebuild my faith, my relationship with my daughter and all of my family for that matter, my finances, my businesses, my educational aspirations, my professional endeavors, etc. As bleak as it looked several times this year I know I’m not ready to throw in the towel yet. I’m just ready to start snapping it again. –Watch out!

Formal shoutout to Dylan here–God bless you and keep you safe. Don’t forget our address and when you get out of boot camp–make sure to call. You are loved and you will be in our prayers.

P.S. I took my own advice and re-registered for the upcoming spring semester. I am going to re-take the two classes I let go. I couldn’t focus last year with the bombarding information coming at me and I also reached a point where I felt I’d rather be spending time with my family instead of having my nose in a book all the time. I was worried I was going to die and I worried about it all the time. I no longer think that way. I believe I’m going to be around here for a while and I may as well get my degree finished. I just won’t try to attain it at warp speed. Third reason–my scholarship people are getting ancy for me to fulfill my contract. I really don’t want to pay back all of the thousands they’ve given me because I’m in breach of my contract with them. I’ve hashed out an extension plan with the TEACH program and I am grateful they are understanding and accommodating to my requests. Now if I could just peel myself away from all the reality TV I’ve become addicted to…:)

Circle of Friendship

circle%20of%20friends%20large%20blue

In this past year, I have come to grow a new circle of friends. An international collection of women and some men that have followed my story and been an ever present support to me as I have battled with many demons. When I started this blog it was to mainly keep a few far off relatives in touch with my progress. As the weeks and months have passed, an army has marched into my life. Some of these soldiers that keep me motivated are friends from my childhood that I have reconnected with through Facebook. I’ve even been getting the hand of Twitter-something that has been driving me a little nuts all summer. Many of my new friends now mingle in with my old friends and it doesn’t matter who drops me a line, I am always happy to know that someone is thinking of me. Many of my old friends now read my new friend’s blogs as well. Technology sure has had a way of connecting everyone.

I have thoroughly enjoyed this network that has spread across the world. My hits have surpassed 10,000 –something I never expected. It’s like opening up a present every morning when I wake up. I check stats to see where hits are coming in from and I quickly check for messages. Love getting them, but don’t get as many as I would love. I check world locator and find that people in Russia, New Zealand, Australia, Hong Kong, Japan, Europe, Finland, Africa and beyond must be subscribers because of the regularity of their visits. I have also been surprised to see that my blog has been rated 4th in the top 100 blogs out there about breast cancer on Networked Blogs. That is fantastic! Now if I could just get all my readers to click follow on that widget in the sidebar–those ratings would shoot up even faster! (That’s a hint! 🙂 ) It is really the one thing that has helped me process this mind-boggling year. Learning how to build a blog, learning how to set up new accounts that support that blog such as flickr and youtube, learning how to grab code and install widgets, learning how to format posts and hyperlink are all newly learned skills that I now really enjoy playing around with. Through it all, I have maintained a clear vision of what I want to do with the blog and where I ultimately want it to go. “If you build it, they will come”, I keep reminding myself.

The way I look at it is this, I am providing my children with a glimpse into their mother’s life. Years from now, whether I live or not from this, my children will be able to understand what their mom went through. My grandchildren will know something of their grandmother. My friends will remember the fight and have a newfound appreciation. It is always humbling for me to see that as I lurk around in the middle of the night checking out other blogs that I find mine in other’s blogrolls. They may be commentators or just part of that silent army that keeps me in their prayers, but either way–to all of you, I want to thank you for your continued support. Then, there are a few that have really helped my army grow. Friends across the country and the world that have quoted something from my blog and hyperlinked your readers back to me. There are community forums that I am blessed to be a part of and in doing so, I have met even more wonderful individuals.

One such woman came into my life just recently, friended me on FB and also proceeded to quote me in a post she wrote for an online news source blog out of Seattle, WA. Her name is Carolyn Harris and she is a writer with a very interesting background. She pens a blog called Lyn’s Circle: Chronicles of a Married Feminist. I encourage you not just to check out the excerpt she wrote about me, but also to check out her bio. When I read it (and to clear up a misprint–my nickname is cj not cy but no worries here) I couldn’t help but close my eyes and imagine what RVing through New Zealand or Sailing to Cuba must be like. I have had the pleasure of chatting with her and am glad once again that in this giant world, I know that there are others that are equally impassioned about spreading the word.

At the end of her bio she states:

“Lyn invites you to join her circle of friends. She feels sometimes women get stuck in their seats because it’s easier to sit there, do nothing and stay miserable than risk a change. She wants you to reach out. Your problem is not unique. Somewhere in this circle you’ll find another woman who understands your scars. With a little help from our sisters, we can laugh a little, cry a little, and figure out what to do with the rest of our lives”.

When I read this, I thought you were talking directly to me. When you came along, I was beginning to retreat once again into a pit of despair, thanks for pulling me out. It’s a never ending struggle to get my head back in the game, just when I think I’m making progress, I have a major setback. Unless you’ve been confronted with something of such life changing magnitude–whether it’s a health related or not, whether its directly or indirectly, you can only try and imagine what another individual is going through. Reality is quite a different story and since we are all on this Earth together, it’s comforting to know that although someone may not actually KNOW what you think and feel, there are common bonds that tie us all together. The biggest of these are love, compassion, and empathy. Thanks for coming into my life, Carolyn. Your presence is appreciated.

cj

Sick and Tired

I have been under the weather for almost two weeks now. This past weekend I spent almost all of it in bed sleeping off this crud. I don’t know what it is and it tends to worry me. As much as I hate to see other family members ill, I’m really glad they all have what I have–it means, in a way, that this is probably not cancer related. It is just kicking me in the butt much harder than everyone else. Then Justin came home with a letter from his school saying that there was a confirmed case of H1N1 Flu present in his school. It really wigged me out. Lots of disinfecting, sanitizing, and handwashing going on here.

I had my yearly physical last night. I sat face to face with the woman who didn’t listen to my moans and groans for a year and just thought I was in need of Xanax or Prozac or both. I know she felt bad, but instead of rubbing it in, I just filled her in on how the year has gone. I wish I wouldn’t have been overtired and wiped out from my huge cold. It makes me more emotional and when she was asking me big questions, I just couldn’t help it, I started crying. God, I wish I wouldn’t have done that. Then, she thought she was right in her initial assessment of what kinds of medications I should be taking. That made me even more upset because why can’t someone just cry anymore without someone thinking they need to be in a doped up state just to relate to what’s going on in their lives. She has put me off to the nurse practitioner all year–since my diagnosis. I’ve been mad at this doctor for a year. Last night I was just too tired and feeling like crud to tell her how I felt about that. The one thing I was really hoping she would help me out on was my request to have an ultrasound done. She wouldn’t. I cried. Again.

Do I think I need an ultrasound? I don’t know. Do I want an ultrasound. Yes. I worry constantly about this metastasizing to my ovaries or my uterus. Pap smears only detect cervical cancer and I will admit–that as unpleasant as those exams are, there are worse things and usually they never bothered me much. Last night–my first one since all this has happened to me–was more anxiety-ridden than any other I had ever had. I had to sit on my hands so she wouldn’t see them shaking. What if? What if something comes back on that? It’s been 7 months since my initial diagnosis–what could happen in that time frame? I know the tumor that was found was said to be a grade three–most severe–even for as tiny as it was and that it was multiplying very rapidly. Could other radicals have found a host by now and be multiplying elsewhere?

Could it be that this is the reason why I am soooooo exhausted anymore? I just can’t believe that a few months ago I had been working and studying 20 hours a day and getting 4 hours of sleep–if I was lucky–every night for three years. Now I can barely see straight come 7pm.

Is my body once again growing and feeding some dragon inside me? Without anyone willing to let me have an ultrasound or pet scan–how will I ever know? I would just like ONE of each–a baseline–to know where I started and that way if I was feeling symptoms of something they would have a marker of where it has come from. Especially now–when Jeff may be losing his job and that will result in a loss of insurance benefits–which makes me pre-existing almost everywhere else. While I have the insurance–just let me do it! Why can’t the doctors code it so it doesn’t look like it was routine? Why does it have to be assumed to be–especially when the initial cancer diagnosis is the underlying reason for wanting one in the first place. I just don’t get it. It makes me so angry. It makes me cry, because I just don’t feel like I’m being heard or that I am just another cancer patient. Trying to “live my life” as my first oncologist told me to do is nearly impossible at times. Its not the same. I don’t think it ever will be no matter how hard I try to carry on with a smile on my face. It just masks the deep pain I feel over the unknown.

Then again–would I really want to know? What if the scans came back and I was glowing like a fire cracker? Would I really want to see that? Would that make me even more overemotional? Probably. But–why wait until you have symptoms–then it’s too late. Wouldn’t you want to know if you have a huge brain tumor or spots on your lungs, or tentacles wrapped around your ovaries? The quicker you can have surgery and cut it out–the better your chances–right? I know it all sounds irratic, but these are the thoughts that keep me awake at night. It’s hard at times to forget, and I make it harder on myself when I don’t follow my nutrition regimine that my nutritionist has worked with me on all summer. Or when I forget to take my Tamoxifin. Major guilt trip. I feel like I have some sort of control with those things or with the exercising, but I am still partly in denial and not being consistent. I have not fully jumped on the bandwagon–I did early on, but now I am falling off and being drug by the cart. I know I need to recommit. I know.

Could it be the Tamoxifin that’s wiping me out? I know it has played a part in my early menopause and with that–could that be making me so tired? Speaking of the Tamoxifin, I tried to see if I could have the doctor’s office prescribe all 5 yrs. worth of meds. in advance. I am terrified that we won’t have insurance and I will not be able to even afford the cost of my prescriptions each month. I have no idea what the cost is, but it doesn’t hurt to ask, right? So, I called there and I didn’t even think about the shelf life factor until the nurse pointed it out. She also really sounded odd and then she told me that they could only refill the Rx monthly so that individuals would be less inclined to sell the drugs elsewhere. Oh my gosh, great, now my oncologist’s office thinks I’m a pill pusher on the black market somewhere and I will be watched for that. It made me laugh in a way and then I realized that there are probably thousands of women in just the same boat I’m in–if not worse. Think about all the women in third world countries who don’t get the Tamoxifin. Then, I think about how I live in America and I will be considered pre-existing here pretty soon–unless an insurance miracle happens and Jeff gets a new job without a pre-existing condition clause.

Is it that it takes a very long time for your body to recover from chemo–(even though I only had one full treatment before becoming severely allergic and going into respiratory arrest)? how long does it take before your energy levels return? Do they?

Is my body fighting against something or just trying to still heal? I know 6 months later, my body is still not draining the lymphatic fluid correctly. Only two lymph nodes were taken out in surgery and my body should have, by now, compensated and learned how to move the fluid through my body. But it still pools under the scar tissue in my chest and it is painful. Weirdly–the whole top of my chest is numb–all the nerves severed, but deeper–around the muscle–it’s still terribly painful. How long will that last? Will it last forever? Is it my body trying to tell me to lay down and get vertical so the fluid can move better? Is my body just working overtime? I do worry about that lymphedema every day and knowing how its pooling in my chest doesn’t help my worries. The surgeon doesn’t seem too worried although in my 2nd followup with him two weeks ago, he was concerned about the continued pain factor I’m having. He didn’t suggest anything, though–so I guess I just live with it.

Will I ever feel the same?

Will my psoriasis ever go away? It seems to be worse these days and that was one of the first indications that I found that alerted me to something being wrong. I know stress exacerbates psoriasis and I am truly amazed I am not covered head to toe in the stuff. Be thankful its just on my elbows, right?

Is the constant stress of the cancer, my self-image, my oldest daughter, how everything is affecting my younger children, my husband’s impending job loss, the uncertainty that will bring to us financially, the loss of benefits, the mounting medical bills for me and for Jasmine, the stress on our marriage and all of our relationships just taking its toll and no amount of counseling can really fix ALL the triggers at this point?

Once this metastasizes–it is really hard to detect if it goes to the ovaries or to the uterus. Why can’t we just schedule a hysterectomy at this point. I’m really inwardly wigging out about this and even though my new oncologist doesn’t want to start “butchering” for no good reason especially when the genetic tests have all come back fairly positive–I can’t help but think–Isn’t cancer a good enough reason? I suppose if I wanted it done badly enough and threw a big enough temper tantrum–I’d get my way–but am I just being over reactional about it? If I’m no longer using the stuff–take it out. That’s three less places for this to land and I will know that I am not going to die from those associated cancers.

Sigh. Sometimes my brain gets so ramped up with these thoughts that they just spew out onto the page. I have to keep coming back to my bible to try to help quiet myself. My goal of self-quieting has been a hard one to tackle this year. I think it also gets revved up as my doctor visits start coming. I will go see the plastic surgeon tomorrow to talk about reconstruction–something I totally didn’t think I was ready for, but with the possibility of losing insurance and the fact that they will now pay for a boob job–I’m going to talk about the options. It may not even be an option, but I have to go and check it out or I will be mad at myself if I let the opportunity slip away. Next week, I see my oncologist for a 3 month check up. I hope we will look at bloodwork and see if anything shows up there. I don’t know what I should be asking him at this point because I just feel like everyone wants me to “live my life”. If any of you have any questions I should be mulling over for him, please let me know. I would welcome them whole heartedly.

I received my long awaited call from NAFCC (National Assoc. for Family Child Care) that my long overdue national accreditation observation is about to happen. I have been working on it for two years. I applied for the observation the end of December 2008. Normally, you should get a call between 4-6 weeks to schedule the observation. Here we are 9 months later and I will finally undergo this on October 6, 2009. They have been swamped since revising their re-accreditation standards and since I am a newbie, I guess, I was not a priority. I often think of what that would have been like should I have gotten that call within the normal time period. I was just getting diagnosed with breast cancer. I would not have been ready for that at all. Looking back, I really am surprised I made it through the summer and really glad that this observation is coming while the house is quieter. I guess I should be grateful that it is happening after my mastectomy, after all the big rowdy boys went off to school, after a regular naptime had been re-established for the little ones, and after my head came back from Bizarro World.

Since this call came through, I haven’t been able to think about too much else in the past week–including the cancer stuff and I have truly welcomed the break. It makes me realize that when I am working on something I’m passionate about, I get a lot accomplished————(Why can’t I get truly passionate about my cancer?)———- I’ve been going through all my checklists making sure all my T’s have been crossed and my i’s have been dotted. I have a book that takes me a few hours to get through each time because I am really focusing on doing my best. I have been through it several times and plan on several more read throughs. I spent all last week working on my parent teacher conferences and getting those in order. I was glad to get them all done so I could move on to more paperwork that has been lagging. I screwed up my classes this year, but I am not going to screw up this. I have worked too hard. I want to be able to look back on 2009 and know that despite the huge setback, I was able to accomplish this major accomplishment. Usually centers or schools or colleges are accredited. It isn’t that often that in-home providers become accredited. So, I am working day in and day out right now and everyone in my family has their very own honey-do lists. I’ll get there slowly, but surely and quite honestly, I’m ready–its just the details I’m going back for. Tons of details, but it will all come together.

I’ve also been allowing several college students studying at St. Ambrose Univ. to come tour my environment. This is good practice for me as they are able to give me fresh eyes. They are students studying to be teachers–how I wish I could go back to school–but I am not ready yet. Maybe next year. Maybe this is why I was supposed to ultimately take the break from my college courses this year. To ready myself for accreditation. To make sure my head was still in the game. I can honestly say that I was in a perfect position to give up on everything I had worked for professionally. Just chuck it and spend my days playing with my family. It was a summer where I was re-evaluating everything in my life and trying to figure out if things were still working or if they needed changing in some way or another. When I look at my chosen profession, I can’t imagine doing anything else. I love working with kids. I love where I work. I love the tools I get to work with! Some people provide child care as a means to an end, a temporary job while their own kids are young, but me–it really drives me. I absolutely love what I do and when I had really looked at all the reasons why I do what I do, I realized my head was ready to take on the observer that would come spend the day with me. If I could just shake this illness now…

We celebrated my son’s 6th birthday this past week. Time flies. I asked him what the best present he got was and he looked at me and told me it was me and that he was super happy I wasn’t dead. “Gee, thanks, babe–I love you too” is what I responded with. 🙂 I’m grateful I got to see him turn 6 and I am glad I’m not dead yet. Lord knows how I’ve worried over that all summer. So, I’m grateful I’m alive. I’ve survived my diagnosis for 7 months now. Almost a year. That’s an accomplishment in and of itself.

I have begun a Wellness class at the YMCA. It is 12 weeks of free personal training–2X/wk. for 1 1/2 hrs. each eve. The best part–its free! I get to work with a personal trainer for free for 12 weeks! I missed the first class because I was sick two weeks ago. I went to both classes last week and thought I was going to die each night. I began working on my WII fit on the off nights, but this cold/flu is really pulling me down. I am so happy for the outlet and MAKING ME a priority. I have met a handful of other breast cancer survivors that are in various stages of their disease or treatment and I just know that will be instrumental in my mental comeback. I think being able to dedicate time to working out will also help me release those endorphins I haven’t seen in a very long time which will help relax me, help me sleep better, make me feel like WANTING to recommit to my nutrition plan again, making me WANT to be more consistent with my med taking, and maybe inthe process, I will lose the 30 pounds I’ve tacked on. UUUGGGHHH! I am bigger than I was when I was pregnant with Jordan (she was the biggest baby)! Could it be the Tamoxifin that is helping me pack on the weight? I know that stress will pack on the weight also and I am surprised I’m not morbidly obese. The added weight make me more sluggish so, I have to lose it.

My other major concern is that I’ve been told that estrogen is stored in fat and since I’m sporting my own personal flotation device around my mid section these days–I need to find something to help me deflate it. I have to lose the weight–I worry every day that the hormone that is feeding my cancer is setting up shop and getting comfy in my fat. Ok–who am I kidding–I also want to lose the weight before my next class reunion next summer–I was so worried what everyone was going to think about my hair–now I just want to walk in and have everyone think, “wow, she looks great for having cancer”. I know. I know. Completely immature and shallow, but who wants to come back after 25 years looking like crap? Yes, I know all the stuff about the inner beauty, outer beauty, lasting beauty stuff, but when it comes right down to it, I really just hope that all my beauties are playing on a level field by then (and I really hope I drop 30 pounds!) :). I’ve run into a few friends from high school, they all happen to be nurses. They have all said I look good–my color is good and since they work with sick people all the time, they can tell when a person is sick. I guess I’ve got that going for me. Problem with that is–I’d rather have hair and a boob–omg–I just did it–I said something very generically–I take that back–let me be specific…

I’d rather have a headful of healthy, blonde, soft, stylishly coiffed hair that I could seductively whip around should I be in the mood for some lovin’, be able to pull it back when I’m feeling playful, and be able to run my fingers through it to tousle it and have that wind blown look that most women dream of. And–I’d rather have two boobs–the same size–preferably a little lifted and energized looking with a natural looking nipple tattooed on the new one. I used to wonder about having bigger boobs and although I wouldn’t mind them a tad larger, I’d now just be happy to look like I did. So a perky 34B would be great. Afterall, it’s not the size–it’s how you package them! I think that’s it–have I forgotten anything? Please feel free to let me know if that wish needs a little more something something. I will be checking out the silicone stockroom tomorrow. Wish me luck!

How the Hell am I Supposed to Know?

Have you ever thought about what you would want to say and to whom if you were drawing your last breath on Earth? I had an opportunity to find out just exactly what would filter through my mind almost a week ago Thursday, May 28,2009. I went in for my chemo treatment and ended up having such a severe allergic reaction to the drugs that I came close to checking out–for good. I’ve spent the past several days reviewing in my mind what happened and it makes me more and more frustrated. The doctor also seems to be giving very vague and watered down information to me which insults my intelligence and leaves me feeling even more like I just can’t trust anyone anymore.

On this particular day, I worked until 12:45 pm and then raced off to place my own child at a friend’s home so I could go get treatment. I almost forgot that I needed to do something with him. Jeff didn’t go with me this time because I really didn’t see the necessity. He’d be bored sitting around for hours and I would either nap or chat with the other ladies I usually got paired up with. I wasn’t nervous about anything or stressed out about anything except that my daughter who had been home for two and a half weeks had taken off again. I was actually curious to see if I would have the same reaction as the last time.

Three weeks ago, it was so hard for me to differentiate whether the excruciating migraines (which lasted 9 days) were a result of the chemo, or because of the fact that three days prior to that treatment, I had all my dental work done–5 cavities filled and a root canal. It was so intense that I had to be put under for three and a half hours while the dentist hovered over me wearing his microsurgeon’s binoculars. When I tell people that they wonder, “Gee, when was the last time you saw a dentist” and my reply is “6 months ago”. This particular example of where my body was in a heightened state of deterioration may or may not be contributed to the fact that I have cancer, and I don’t know whether or not research has been done on this, but if you ask me personally-I do believe this was a telltale sign. It could very well have been a combination of both.

I had been told I wouldn’t have much of an appetite afterward and that food would taste different. Due to the pain and throbbing in my mouth, I wasn’t able to eat or sleep for 5 days straight. Everything did taste different, too. It had no taste, actually. My mouth seemed dead. There were no flavors and even when I tried to eat, I was forced to suck on everything because there was just too much sensitivity. I was also extremely wiped out once that shot of Neupogen hit my system the next day. After 9 days of these horrific headaches, I finally called the oncologist’s office and told them what was going on. It truly felt like there was something happening to my brain. I could only visualize the worst–possible bleeding, blood flow being severely restricted, something getting ready to burst, and so on and so forth. They talked to me like I was an idiot. Their response was “well, why in the world didn’t you take any Ibuprofen?” “Gee, I don’t know, because I’m a masochist, I guess–DUH…I was told I shouldn’t take it because it thins the blood. I wasn’t told I COULD take it–at some point–and when is that point?” I mean really, it’s not like I’ve ever done this before so–HOW THE HELL AM I SUPPOSED TO KNOW???

In all, it has taken close to three weeks to be able to chew anything. There were several days where I called my new dentist up and asked about the problem. I even took all the children with me one day so I could have my bite filed down a bit in an attempt to lessen the skull piercing pain. I was told it may not take and we may need to pull the two teeth in question. I just prayed that wouldn’t happen and kept taking my antibiotics faithfully. I was desperate for some pain meds, but working with children during the day and transporting them to and from various activities–I knew that wouldn’t be an option–I’d be under the influence. I just stuck to Tylenol even though it didn’t work and so, I suffered through it.

Mother’s Day weekend I was wiped out. I was also emotionally drained because that was the weekend we found our daughter. I was stressed and worried and sick to my stomach about what was going on with her. Through it all, I managed to take her to the doctor to get her the medicines she needed for a host of illnesses. I also ran kids to birthday parties and coffee house meetings so I could get to the bottom of some girl drama with my young daughter, her friend, and her friend’s mother. I couldn’t sleep, I couldn’t eat, I couldn’t do anything but cry. I had reached an all-time low. Not about the poison that was filtering through my veins, not about the constant questioning that I submitted myself to everyday, but for my daughter and for my best friend who was losing her dad to stage 4 lung cancer. While in Virginia over the holidays, she received her news. Just a few weeks later, I received mine. Together we have cried and bitched and moaned and occassionally laughed. We have been there for each other and had it not been for each of us–the other wouldn’t have been able to get through these life changing events. I was at the visitation this past Tuesday where they said goodbye to her dad. She and I were just becoming close when my dad died exactly one month shy of two years ago. We’ve been through a lot–her and I–we both have teens that have pushed every limit possible and thankfully we have been able to lean on one another and vent our frustrations. We are both childcare providers and we both are going to school together. We are both at the same point on the wheel at the moment. As it happens, life has thrown a huge crow bar into our wheels and we have both come to a screeching halt. On that Mother’s Day weekend, I cried for my friend. I knew what it was like to lose a father. I knew it wouldn’t be long and I prayed he went in peace. I’m glad he did.

Here it is now four weeks later and I just can’t believe it’s been one week since this life-threatening episode happened to me. I really didn’t expect anything to happen. I walked into the place and had a seat after checking in. I was called into the examining room where the Dr. came in to talk to me and see how I was doing. I really didn’t have much to report and I had told myself not to forget talking to him about the Ibuprofen, but I did. From that room, I was taken to the other side of the building where the chemo rooms are. I’ve never been given a private room, they’ve always been communal. I don’t mind that because there are other women there in various stages of their cancers and I have gotten a lot of information from the ladies in those rooms.

The first time I went, Jeff took me. I remember it being a gorgeous day outside. My spirits were up and I was totally packed and ready for a long day. One of my daycare moms, Tracy, gave me a care package that morning. It had trashy magazines to read, lemon heads (supposed to take away the metallic taste you might get in your mouth), gum, a little personal fan (in case I got a hot flash), and a new water bottle (pink–just for the occasion). I was so touched by that gesture and I realized I had not thought of taking any of that stuff, but she also has family members who have gone through this and so she knew more of what to expect than I.

Last Thursday, however, I was in a rush. I hadn’t packed anything and really didn’t worry about it since there was a TV in each chemo room, a small fridge, snacks, blankets and lazyboys to recline in. I did pray that something more positive would be on the TV this time. The first time I was there the ladies and myself were glued to Elizabeth Edward’s interview with Oprah where they discussed her husband’s affair and her battle with breast cancer. Hers is terminal. I wondered if that was a sign that first day. On this day, there was only one other gal in the room. Her husband was with her and she was sending him off to poke around Home Depot for a couple hours. We started to chat and it turned out she was past staging. Totally terminal. She told me that, at first, she had had stage 2 with no node involvement. She had gone through a mastectomy, chemo, remission for a year, and now it was back–widespread throughout her bones and brain. She was now undergoing chemo again–heavier duty stuff, radiation to the brain–resulting in hearing loss, and the cancer had deteriorated her vertebrae up where it meets the skull and she could no longer hold her head up. This resulted in spinal surgery where rods and metal plates were fused to her upper spine. How depressing is that. I know. Totally. Yet, I keep getting paired up with patients with stories like this. It is doing nothing for my emotional stability. It doesn’t give me encouragement or hope and I am not sure if its just a random draw as to what room I am put in, or if Iam put in there to boost THEIR faith and hope.

The last time I had treatment I made it through the whole bag of Taxotere and it wasn’t until the last half hour of it that I started to feel some weird stuff–my eyes were burning and watering, my throat was on fire, my chest felt really tight and it was hard to breathe–but it was somewhat tolerable. I didn’t say anything at first because I figured this was what having chemotherapy felt like–afterall it is poison that’s being infused into your veins. I remember really trying hard to withstand the drug, but with 10 minutes left of the bag, I had to tell the nurse. She said to me, “well, honey, you’re having an allergic reaction–why didn’t you tell us sooner?”

My response to her–“HOW THE HELL WAS I SUPPOSED TO KNOW?”

Geez, I’ve never done this before, I don’t know what is normal. I’ve never had an allergic reaction of this kind before–and I’m allergic to a lot of stuff. Nothing was explained to me beforehand. I wasn’t prepped on what signs to watch for. It really felt like she was considering me an idiot–like–“Duh”. She then turned the meds off and switched me to Prednisone, Benadryl, and Saline before turning the Taxotere back on to finish out the drug. I thought it was odd that if I was having an allergic reaction to the Taxotere–of any magnitude–they would stop that drug–I mean–I was almost done with it–why not just stop that and switch to the Cytoxin at that point? I don’t have the medical knowledge or training when it comes to this stuff and so as I watched the drip start again, I paused and thought…

HOW THE HELL AM I SUPPOSED TO KNOW…

So, as I sat in my Lazyboy recliner chatting away with the terminal gal, I apprehensively watched the different drips of liquid oozing from their bags and traveling down toward my vein. For the first hour and half everything was fine. Through my IV, I was given 2 bags of Prednisone (because I fell asleep early the night before and forgot to take my pills), one bag of Benadryl (just in case I started to have an allergic reaction like last time), and a bag of saline to wash it all out of the line before the Taxotere drug started. A woman from Gilda’s Club came in and we were all laughing when I got this familiar feeling. The same feeling as the last time only this time it came on with such ferocity and within the first couple of minutes after the Taxotere started that I had only a moment to react. My eyes flew up to the bag hanging above me and through burning and watering eyes I noticed that I was at the very beginning of the bag.

“Shit–I have to get through the whole bag ‘, I thought in an instant. Then I felt my throat begin to swell. What a strange feeling that is–but it was just like the first time only it was rushing in like an F4 tornado. I struggled to gasp for air and my arm went up to wave to the two ladies that I was in distress. I could tell my face was getting red. My lungs felt as though someone had taken a rope and wrapped it around both of them, tying and overhand knot, and pulling tight. Initially, I began to panic, but somewhere I remembered not to expend my energy by flailing. I never saw the woman from Gilda’s jump up and race down the hallway in search of help. I did hear her screaming, though. I felt someone thrust a bedpan in my left hand that was clenched tight into a fist. I remember thinking–“oh, God, I hope I am not going to start foaming at the mouth or vomit in front of all these people that have just run into the room. Then, my mouth filled with cortisol–that stress hormone. I was just talking to my nutritionist about that last week. He told me that in a fight or flight mode your body produces this and in extreme cases your mouth will fill with something that tastes like copper metal. Sure enough, the most rancid mouthful of copper was now trying to make its way out of my mouth. Is that what the bedpan was for? I remember my body slumping over. It was as if I was in a coma–unable to move, speak, or breathe, but fully awake and aware of what was going on around me. I know at least a minute and a half had to have gone by by the time the doctor came running in the room. I had been curled up on the Lazyboy with my legs tucked underneath me and he straightened me out, but I was still slumped over. I couldn’t move. He got down on the floor and looked into my eyes and asked, “Can you breathe?”

Mind you, by now I was purple and the pressure in my head was so great that I thought something would surely explode. So, when he said that to me I wanted desperately to say sarcastically, “Does it look like I’m breathing?” but I couldn’t. I looked hard into his eyes as I felt more and more like darkness was approaching. With my eyes I told him…

“Please find my daughter, Jasmine, and tell her I love her.”

“Please get my cell phone and call my husband and let him know what’s happening–and tell him I love him.”

“Please find my other children and tell them that I love them.”

and then I thought…

“This is it. I’m going to be staring into the eyes of a man I don’t trust as I leave this world. I’m holding the hand of a strange woman.”

I remember him telling a nurse to go get the epinephrine. I thought–“oh, shit, that’s gonna hurt when they jab that needle in my leg”. I remember her returning. I saw her standing there, not with the epi-pen, but with a syringe. They were going to put it into my IV which had been turned off and replaced with more benadryl. But she never came. It was never put in. I remember pretending I was diving into an olympic sized swimming pool. I was swimming the length of it underwater very slowly. I kept telling myself…

“When I get to the other side, I’ll come up for air”.
“When I get to the other side, I’ll come up for air”.
“When I get to the other side, I’ll come up for air”.

Then the lights went out. When I opened my eyes, I was covered with a blanket, my breathing was very shallow, and I had oxygen up my nose. I don’t know how much time had passed or what happened, but I knew I was going to have to stay for a long time while they watched me. I was so tired. Everyone was gone and every once in a while someone came back to check on me. I reached for my phone and tried to call Jeff several times, but he never picked up. I tried to text Jasmine when my new friend, Denise, from down the street texted me inquiring when my chemo was. I was still pretty out of it and I sporadically told her what happened and that I was alone and couldn’t get ahold of Jeff. This woman that I had really just started talking to in the past couple months came to be with me. I was really touched. She drove me home and helped me pick up Justin. I will always remember and be grateful for her texting at just that moment. A sign. God is putting new and old friends in my life to help me when I need help.

I was told to come back on Monday of this week and the doctor and I would discuss options. I was able to go to my appointment through the help of my dear friend, Becky, who was off from childcare and making arrangements for her dad’s funeral the next day. She watched a few of my daycare kids for an hour so I could make that appointment. Jeff met me there and together we went in to listen to what the onco man had to say. Remember back when I said I had decided to like the guy? I take that back, now. I’ve been getting increasingly annoyed with this man. I truly feel that he gives me information in a very watered down fashion. He talks vaguely and I need specifics. I’m a big girl, I can handle it, just give it to me straight–BE SPECIFIC. But he’s not and I start getting upset and so once again, our visit ended in a deadlock between us. It went like this…

He comes in and shakes my hand and acknowledges Jeff. We exchange salutations and he says, “So, Thursday didn’t go so well”.

CJ: “No, it didn’t”
Dr.: “I don’t think it would be in your best interest to pursue any further treatment–do you?”

HOW THE HELL AM I SUPPOSED TO KNOW?

CJ: “I don’t know, are there any other options?”
Dr.: “Well, yes, but we can no longer give you anything in that whole class of drugs now because the first time you had a mild reaction and this past Thursday was very severe. The next time would have grave consequences”

I’m thinking…..”DUH”

CJ: “I’m curious why you didn’t do anything–call 911, administer the epinephrine, etc”
Dr.: “Well it looked like you were going to come out of it’

Was that before or after I blacked out? Really–what was the guy waiting for–my heart to stop beating? I went over two minutes without oxygen. I don’t know about any of you–but it’s stuff like that that makes me not trust the people I’m paying unbelievable amounts of money to help KEEP ME ALIVE. ???

Dr.: “We could continue with another course of treatment that consists of 3 drugs and would need to be taken 5 more times. Usually it’s 6 treatments, but since you’ve already had one, you’ll need only 5 more. The drugs are Cytoxin–which you already have had, Methotrexate, and 5FU”

“Well, that last one is appropriately named”, I thought.

CJ: “What is the difference between the two courses”
Dr.: “This course was used a long time ago–like 20 years back. It’s side effects are severe diarrhea and mouth sores”.

That’s just great. That’s just what I need. I’m so sick of all this crap (no pun intended) and I just want my old life back.

Dr.: “It seems to be tolerated pretty well, but you need to decide whether you are interested in pursuing chemotherapy at all or if you just want to stop. Do the benefits outweigh the risks?”

HOW THE HELL AM I SUPPOSED TO KNOW?

CJ: “I don’t know what the benefits or risks are of these drugs. I don’t have any information on them. Is taking them going to increase my chances for any other major problems–heartattack, stroke, anneurism, other cancers?”

CJ: “If I don’t do the chemotherapy at all, then what? What happens then? How do you monitor me? Are you going to give me a whole body scan at some point? How do you tell if its coming back? How do you tell where its coming back? How do we proceed from there and for the rest of my life?”

I was so upset. Here I was back at square one again–needing to make this decision all over. It was just so overwhelming. Is it good enough that I’ve already had one treatment? Am I settling with just one treatment? Was that enough to eradicate all the free radicals that could be swimming around my lymphatic system just lying in wait for a new host site? Or do I go for the new course of treatment. Afterall, I already chose chemotherapy the last time foregoing the study. That was my huge gamble, my roll of the dice. I made that decision once and then I stuck with it. Should I do that again–I mean–if I lost all my hair for just one treatment–I’m gonna be pissed.

Dr.: “It just seems like you want to be in control of everything”.

Again, I wanted to say to him…”Duh”.

CJ: “Of course I want to be in control. I have very valid concerns about my care and the people I have entrusted with my life. I don’t feel that my questions are being answered. I feel that you want me to make a decision rashly and without the information I need to make an INFORMED decision”.

Dr.: “What is it I haven’t explained over and over? I cannot tell you if its going to come back. There is no guarantee with chemotherapy”.

CJ: “I want to know how you can tell if its coming back”

Dr: “I can’t”

CJ: “That doesn’t make sense–how can others get PET scans that let them know if they have anything growing somewhere else. Why can’t we do that?”

I’m sorry, but there just seems to be a few links missing in the chain. There is specific information that is not being told to me. Just tell me, dammit, is it an insurance thing? Is there a protocol for these types of things? Do you have to do X,Y,and Z before I get the PET scan? Am I even thinking of the right type of scans? Am I using the right terminology?

HOW THE HELL AM I SUPPOSED TO KNOW?

Jeff: “I think you’re worried about the end of this process and not focused on the here and now”

CJ: “No, in order for me to make the decisions I need to make here and now, I need to know the timeline of events. It’s how I process things. Tell me everything from start to finish so I can process all the steps in the process. So I can wrap my brain around what is happening and I can choose to deal or not deal with it’.

Dr.: “I will not give you this PET scan. We just don’t use this as a way of diagnosing. You would just become a victim of technology because we all have cancer cells and you may see something that may not be something we need to worry about.’

CJ: “I understand that, but you may be able to detect new tumors forming on major organs and how are you going to know if something is coming back if you don’t do scans and at that point–will it be too late? And if you catch it in the early stages then we have a better chance of getting rid of it.”

Dr.: (fully exasperated) “Listen, just go live your life and don’t be so consumed with this”

CJ: “WHAT?? I would love to. Do you think I want to have poison pumped into me? Do you think I wanted to wake up to this diagnosis? Do you think I wanted to have my breast cut off? Do you think I wouldn’t love to just have my old life back? Do you think I wouldn’t love to be sitting somewhere other than here in this office? I would LOVE to go live my life. But, my life is forever changed by this. No, it doesn’t need to define me, but you tell me one person that doesn’t worry about whether or not there cancer is going to come back–and where it will come back–and how severe it will be when it does. Maybe survivors or patients that are in remission are able to sleep a little easier the further out from their surgery and treatment they get, but when you are still in the thick of it–how can you not be consumed by it? This cancer has not only invaded my body, but it has invaded my sleep patterns, my dreams, my thoughts, my fears, my hopes, my family, my jobs, and all the little details that make up me. It has affected my appearance to the point that I am reminded every minute of every day that I have cancer. I have a 10 inch scar across my concaved chest where all the nerves have been severed and I can no longer feel anything. I have lost all my hair, gained 20 pounds, and watched the bags under my eyes get darker. You don’t have this. You are not emotionally invested in me, but the people around me are and this has affected their lives also. They would love for things to be back to normal also. My normal is so far removed from what it used to be that I can only dream about my old life now. It will never be like that again.”

I wasn’t crying, but my eyes were filled with tears. I was pissed. And you know what he said to me?

Dr.: “It seems like your on the verge of a mental meltdown and you really need to relax because that is half the battle”.

I had to suck in my breath. A mental meltdown? Are you freaking kidding me? I wasn’t–until he said that and then I was so angry that my eyes turned into slits–I knew at that moment, I looked like my mother on one of her good days. I was completely insulted. Even if I was going to have a meltdown–who is he to judge? Just because I don’t roll over when he tells me to and just because I come in there armed with questions and I am expecting specific answers to those questions–to him–that makes me a control freak. If I show a tear or two out of frustration–well, then, I’m on the verge of a mental meltdown. Maybe most patients worship their doctors. Maybe they will do anything that doctor says without questioning it. Maybe they don’t have the courage enough to stand up for their own bodies and their own health–but that’s not me. I’m trying to be proactive about my life, my health, my options. I can’t control the unknown, but I can try to control some of the knowns and how do you find out about those? All I wanted to know was basically–How are you going to monitor me if I don’t do the chemo? And in return, I get tactless, sexist remarks.

CJ: “Tell me this, how do you define remission? How do I get there? How do you know when you are no longer in remission?”

Dr.: “Remission is when your cancer hasn’t come back in a while”

Geez, I feel like I’m playing word games with my teenagers. Why can’t he be SPECIFIC?

CJ: “You’re idea of ‘a while’ and my idea may be totally different–what’s you’re definition”

Dr.: “Listen, you probably already are in remission”

CJ: “How do you know that? How can you tell? To me, there’s a wide disparity between ‘Probably” and definitely.”

Dr: “You’ll know.”

CJ: “How can you say that? What if I don’t? I didn’t know I had breast cancer.”

Dr.: “You’ll feel it.”

CJ: “What if I don’t? My own doctor didn’t feel anything–it was only detected through imaging. I just want to know how you are going to be able to tell if I’m getting this somewhere else. Are there blood tests you do that alert you to increased elevations in certain counts? Something that would make you say–‘oohh, we need to look into that further’ and then you order some scans? And why don’t we just go ahead and do the hysterectomy and even an ooferectomy (removal of ovaries) since the Tamoxifin (hormone blocking drug given for 5 yrs.) is known to cause uterine cancer.”

Dr: “That is major surgery and we don’t just do that without reason.”

How many more reasons does he need? Should I see a gynocological surgeon to talk to him/her about it? Has he forgotten the massive surgery I just underwent? If I am ok with it, why can’t we discuss it? Hysterectomies are done every day? Two less places for this cancer to land. I know I won’t die of ovarian, uterine or cervical cancer then.

Maybe I was not expressing myself or my concerns in a way that he understood. I knew he wasn’t giving me the answers I needed in a way that I needed them in order to process them and make a decision. I know he just wanted me to shit or get off the pot. Chemo or no chemo so we could go from there. I was hung up on what would happen if I chose no chemo. I know, to him, it must seem that my inability to make a quick decision was really indecisiveness or in essence inaction–procrastination. The look in his eyes and on his face spoke volumes of this. I tried to convey to him that this wasn’t like picking out my nail polish color for the week. We were at a standstill and I was keeping him from lunch. He got up to leave and he said,

“Why don’t you think about it for 24 hours and then call the office and tell me what you would like to do–if you decide on the chemo we’ll see you tomorrow”.

With that, he left. Well, that is impossible. I simply will not come in tomorrow on such short notice–I have other families that rely on me being there and they already took off Thursday and Friday of last week. I can’t wammie them like that. I simply won’t even think about that as an option until next week. I don’t know if that throws things off in the cycle or not. I don’t know if they HAVE to stay within a certain time frame. Maybe not doing it until next week kicks me out of the 5 cycle treatment and back into the 6 cycle treatment all over again. I just felt like there were too many things I wanted answers to and I wasn’t getting those answers. I needed to talk to other people and get their thoughts. I talked to Denise for a long time about what her follow up care is like. I wondered why I just couldn’t forego on the chemo for now and if it turns up somewhere else–start it then–or is it too late at that point? If all these women that are in these rooms have already been through it before and they are back again–then it really didn’t do them any good in the first place–did it? I needed to take a break from thinking about it.

I didn’t call them back the next day. I called my Aunt Pam. I talked to other survivors. I really talked to Becky and Denise. I called the nurse this past Wednesday and for 40 minutes we talked. She pretty much reiterated what he said and I felt myself frustrated all over again. We hung up with her promising to get specific answers and call me back during naptime. When she called later that day, I did get a couple nuggets out of her. I was told that the shot of Neupogen would no longer be part of the regimine and I was glad because it carries a risk of future Leukemia. She told me specifically that one treatment isn’t “good enough” because studies have shown that 4 treatments (or more) depending on the type and stage is the magic number. FINALLY, something a little specific–one question down. I was told that I would have regular 6 month checkups where I would have a mammogram and we’d discuss how I was feeling.

That’s it? How is it that everyone else I talk to has regular CT scans of their bones, brain, full body, and chest x-rays. I was originally told the likelihood of it coming into the other breast was minimal and that this type of cancer usually travels to ovaries, bones, brain, lungs, and/or liver–major organs. You can’t even detect ovarian cancer through yearly pap smears. By the time its found–its usually too late. I watched Farrah’s Story the other night on TV and she was getting all her scans done each time she went in. Is this something just for the uber rich?

I know he’s not God–he can’t tell me whether I’ll get it back anytime in my lifetime again. He can’t “cure” me, but there has to be a way that he can tell if I’m growing a tumor somewhere else. I know in my gut there’s an answer to this somewhere. I went onto the Cancer Treatment Center’s website and looked at the list of things you would have to bring with you to your initial consultation. In that list–all your CT scans. I’m to the point where I just need to talk to another oncologist to see what the protocol is. I cannot afford to take off a week for the initial visit at these Centers, but I will try to get in with Denise’s oncologist. I’m really not trying not to pick fights with my surgeon or my oncologist, but dammit, I know there are answers out there. I’ve realized that it’s not so much the cancer I’m fighting as it is the fight I am battling each day with the insurance company and the doctors that are supposed to be looking out for me. I just don’t trust anyone. Not one doctor I have has given me reason to do that yet. Am I just being a bitch? I hope so. Babe In Total Control of Herself. I am trying to look out for me.

I’m in need of advice. I need SPECIFIC advice that deals with these drugs and also the types of follow up care I should expect to receive at each future visit. I’ve researched the drugs and its all so worrisome. I think back on this past week and all the conversations I’ve had with friends, survivors, terminally ill patients, and medical professionals. I’m taking all this information in and trying to come up with an informed decision. If you can help me–please leave comments because…

HOW THE HELL AM I SUPPOSED TO KNOW.

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Started Tracking on 12-1-09