i still fall down

This past Tuesday was my test results day/chemo day.  After ten years of chemo and tests I had become immune to the anxiety that happens with test results day.  This time was different.

I woke up and immediately was down.  I got dressed, got ready, my mom came to pick me up, all normal stuff, and on our way we went.  On the way to the doctor's office I sat numb.  I didn't speak, I couldn't speak.  Tears continuously flowed out of my right eye.  I couldn't stop it. 

My head was going in circles.  My thoughts were of my throwing a tantrum in my oncologists office, I'm not sure what about.  Maybe it was because I was just sick of all of the nonsense.  Tests after tests, treatments after treatments, crazy news after crazy news.  In my mind I tell myself how lucky I am to still be here.  I honestly know I am lucky.  I have been able to watch my daughter grow and flourish into a young woman.  She is now fourteen and in high school, finishing her freshmen year. 

I still have those thoughts though.  The negative thoughts.  The ones that send me to my oncologists office in my head, trying to imagine talking to her, but only tears come out.  Without knowing why those tears are flowing.  It's a mind game.  One I normally have control over, and not having control of it scared me. 

Fortunately I am close with the girls in the lab and they cheered me up without knowing what they were doing.  They didn't see the turmoil underneath the made up face and smile.  It was just another day.  I have to have my blood taken out of my foot and I'm a hard stick so it's always an ordeal.  A painful, hilarious ordeal.  While one tries to stick me, others try to sidetrack me and this day was just more ridiculous than normal.  I left there laughing and back to myself.

Just like that it was gone.  The memory of it is still there.  The desperation I felt, the lack of control, the fear of the unknown.  It reminded me of the first time I was diagnosed or those feelings of helplessness.  It scared me because I thought I was past those days.  The realization that I'm not kind of sucked.

I received good news though.  My cancer is of rare form and most of it only shows up on the ultrasound.  We normally do a PET/CT but because of my diabetes problem (for those years on steroids, thank you cancer) that had just reared it's ugly head I was not able to take the PET scan.  Also, because I am allergic to the iodine contrast for the CT scan I have to have a CT scan that doesn't really show everything but it showed enough. 

I have a few areas of growth but not enough to justify changing treatments.  Apparently there has to be a 25% growth to decide the treatment isn't working.  Some areas stayed stable, which is always good news, so all in all, good results.  I am tolerating the treatment well enough to stay on it so no change in my treatment plans.  Great news!

I left the doctors office renewed.  The darkness still in the back of my mind, but really far back.  My mom and I did our routine of lunch after treatment and we hit up Copeland's Cheesecake Bistro.  A perfect ending to the day. 



xo

Shannon

I wanted to be open and candid about my feelings.  A lot of times I wear a mask of being uncrushable but I had to release all of this.  Maybe some of you will relate, maybe it will help someone out there. 

Good Wishes, A Hug for Your Head

Today I want to talk about a sweet organization that I discovered.  They are called Good Wishes (A hug for your head, cute right!).  As I was going through my mountain of papers I came across this little pink piece of paper that looked so cute, so I looked them up.

What they do is provide a scarf to anyone with hair loss or thinning hair due to illness or treatment at no cost.  They want to share good wishes (about link) to those on there way to recovery.  It all started when Laurie Erikson, who was the owner of a hair accessories business was approached by a customer, who requested something for her balding head.  Laurie used some of her finest cotton and silk fabric to make a scarf for the customer.  The staff signed the card and so Good Wishes was born.  Good news is they have a children's line as well!

In the last nine years Good Wishes has sent over 39,000 scarves to those requested.  What I found simply fantastic is they takes every name, city, date sent, and scarf number on a place card and these are taped everywhere in the office, as a reminder of what they are doing this for, to help those on their journey, and send them additional good wishes.

 On their site is a resources tab that list many other organizations.  

A pic of their office!

photos courtesy of:   www.goodwishesscarves.org

xo and good wishes to all of you,

Shannon

JenniferFromTheBlog

Today we have a guest blogger.  JenniferFromTheBlog.  I met JenniferFromTheBlog through a mutual friend when she was first diagnosed with Breast Cancer, through Facebook. She didn't live in the same state I did, but we kept up with each other the way you do on Facebook. We finally met one day when we happened to bump into one another , while we were both at an appointment at MD Anderson Cancer Center in Houston. This was completely unexpected, definitely God had a part in us meeting. Jennifer says, " I just turned around, and there you were." She even checked Facebook to be sure it was me. This lady is an amazing woman and you will love hearing from her.

Shannon

 Hello everyone, this is JenniferFromTheBlog here. Ya know, if someone would have asked me me 5 years ago, if I thought I'd be here writing about my experiences with Breast Cancer, I would've thought you were crazy. Of course not, that would never happen to me. I do my monthly Breast exams, I eat right, I exercise when I can, no never. But, here I am, 5 years a later, writing about how Breast cancer has effected me, my children, and even my family and friends. 
    For privacy reasons I will not disclose my children's names. I am a divorced, single mother of two girls. They were 10 and 7 when I was diagnosed with Breast cancer. I don't ever think I will forget that day. I went for a mammogram because I had found a lump. Actually, I had found this lump nearly a year before this mammogram, but my family doctor told me, "Oh....it's nothing to worry about, it sometimes just happens. Probably just fat necrosis." Okay, I was 30 at the time, what did I know. This was my doctor. I went with it. Well, as months passed by, I noticed changes. Enough changes in 10 months, that I scheduled an appointment with a wonderful OB. He jumped all over it. He requested every test he could, it was scary. But nothing, could prepare me for those words. 
   I remember that morning so clearly. I took my kids to school and I drove to that appointment, I went alone. Didn't think I'd need anyone, it was just a few tests. Well, after just one ultrasound, the Radiologist came in. She says to me, " Ma'am, normally we would ask you to return a week later for a biopsy, but we need to perform these tests immediately. We are quite certain, ma'am, we found 7 masses in your left Breast". Talk about can't breath. I said nothing, a tear rolled down my face. "Ma'am she says, would you like me to call someone?" I couldn't talk. I couldn't stand. All I could see were my daughters graduating high school, getting married, having babies, was I going to be there. What was I going to tell them. I'm all they have. 
   After a call to a friend, I settled down. We did biopsies. I was diagnosed with Invasive lobular and invasive ductal carcinoma. I had two aggressive forms of Breast cancer in one breast! Go big or go home, right? Yeah.  That had to be the longest drive home, I had ever had in my entire life. I call this, the day my life stood still. It truly was, that day.

I hope you haven enjoyed my first entry. I want you to understand me. So, I will start from the beginning, so you know where I am coming from. Feel free to ask me any question in. You comments. I look forward to hearing from you.

Thank you for reading, 

JenniferFromTheBlog

Diane O'Connor Thompson Breast Center

I am so happy I decided to do this.  Now, instead of focusing on what I can't do I am focusing on what I can do.  I'm not getting to watch as much Netflix or Hulu but I think it's worth it.  I keep finding more resources and it's like, OMG!  A lot I don't qualify for because I'm "too old" now or I'm still in treatment and they are for the "out of treatment" people, but they are resources for others.

I'm excited to announce that I have three guest bloggers lined up already.  Ladies that I have met through this experience that, I believe, will bring different perspectives, information, and heart to this blog.  Always keep checking back, I am adding more information daily.

For those who are looking for specific help you don't find on here right now, feel free to email us at pinkprincessesblog@gmail.com with any questions you may have, information you need, or maybe you want to be a guest blogger.  We check email frequently and will do our best to find what you need.
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Now for some great information I came across.  The University of Colorado Cancer Center's Young Women's Breast Cancer Translational Program.  I briefly touch on this resource under my resource section but I was looking at their Spring 2015 Newsletter.  In this edition there are some great information I wanted to tell you about.  All this information is taken directly from their Spring 2015 Edition.

• They have a special interest in raising awareness and treatment of Pregnancy Associated Breast Cancer, which can be diagnosed even up to 5 years after a childbirth (I find this information very useful because I fall into that category as I know a lot of other's are as well)
• At the University Colorado Cancer Center they are working on vaccine trials.  New immunotherapies seek to block cancer's actions.  These vaccines also teach the body to recognize and attack cancer cells.  As a benefit of the targeted treatment, they have fewer side effects than traditional treatments (i.e. chemotherapy, radiation)
• There are many types of research, from treatment trials to surveys to exercise trials to even donating a part of your cancer.  Even if you are up to 10 years from your original diagnosis you are still eligible for some trials.  Currently over 20 treatment trials are open, including special trials for BRCA+ or HER2+ patients.  You can even just donate part of your tumor biopsy for one trial.  Contact them for more info!
• A recent study includes examining breast changes in women after pregnancy and breast feeding.  Young women who recently gave birth and have not been diagnosed with cancer have volunteered to join this study to help them learn more about young women's breast cancer; and in particular, pregnancy associated breast cancer that can occur up to 5 years after the last child birth.  The study remains open!  Contact today if you are interested in participating and tell your friends who have recently given birth!

Contact them today to learn more about Research or Clinical Trials!

Uch.edu/breastcancer

twitter: @youngwomenbc

youngbc@ucdenver.edu

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All information is taken from the

Diane O'Connor Thompson Breast Center 

Breast Cancer Services

pamphlet (received from the YSC Summit 2015)

For an appointment call:  (720) 848-1030

More about the CU Cancer Center at University of Colorado Hospital.  Each patient has clinical teams assembled specifically for each type of cancer-and they bring the specialists to you, often at one location and in one visit. (I'm not sure what the "bring the specialists to you" part means)  As true subspecialists, their team treats the most common and rarest types of breast cancer (something I am so interested in because mine is a rare 2% of all breast cancer's).   

The care is comprehensive, and depending on your situation, your Breast Center care program will include a combination of their team members.

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I hope there is some information here that helps someone.  It was so important to me when I learned of all the specializing they did.  The vaccine trials, how cool!  I will be calling them soon, I will let you know how it goes!

xo,

Shannon

Lightbulb

After my last post "Pondering", I was going through a bunch of stuff, worrying about a trip I'm supposed to make in April that probably won't come to pass, and going through so stupid chemo side effects.  As I stopped to see what was wrong with me, well once I noticed how bad I felt and that it wasn't going away, I went online.  I searched my drug, traveled to many different websites, researching my drug.  I've done this a million times before, for just about anything, don't we?  I found a website with a more comprehensive list of side effects, that were also broken down into how it affects the different systems in your body, which is where I found my answer.  All my symptoms were chemo related and I was just going to have to deal with it.  Make myself as comfortable as possible and get over it.

That's when the lightbulb went on in my head.  It doesn't matter if someone is already doing something like me.  I mean shoot, it's some of my own ideas being presented there.  I'm proud of SurviveDat and all they have accomplished.  They (I should say we) are amazing and I will be with them until they make me stop.  There is always room for one more resource.  As I go through all the resources I have represented just in paperwork next to me right now, some of them do the same thing, lots do the same thing.

So I decided, I'm proud to be a resource available.  Guest bloggers will be happening, more resources coming, and really I'm just getting started so stick with me and tell your friends (with cancer, and without if you want to).

xo

Shannon

Pondering

So here I sit, pouring through resource after resource.  Trying to figure out what title they go under, do I list local organizations in that help certain cities or states only?  Do I include different organizations that sell things that raise funds for different organizations, do I include agh! just so much stuff.

The next post I was going to post was SurviveDat, a group I literally work one on one with, and sit on the board.  Honestly, I hadn't visited the website in a while.  The last time I had visited there weren't many resources listed and I just never went back to look.  I don't go looking at websites too often, unless it's Amazon.  I've got that on my phone.

I make it to the website and click on the resource tab.  They have been working like ants!  There are so many resources on there, and they are organized so well.  Honestly I have been doing more of the support group stuff then anything.  I just got a scholarship to attend their workshop in Birmingham and am so excited about that, but I guess I have been a little into myself for awhile.

I can't blame cancer for everything.  I mean, I don't think so.  I look back and wonder if I could do things differently.  I've tried so many different things, diets, pills, different programs, and really none of them worked.  Cancer would still grow.  I'd get a job, then get cancer again, lymphodema acts up, chemobrain comes out in full force, and I get asked to stop working.  Sometimes, I get so sick that I just stop working.  Just stop.  Decide I can't focus on anything, they would be better without me.

My battle has had so many ups and downs; as with anyone's battle.  Good news predates a mountain of bad news.  It's just been that way.  I'm not complaining, really, just being honest.  I battle major depressive disorder, along with anxiety, and sometimes get frozen and unable to do anything.  I miss being confident in myself.  I really miss that, I don't know when I lost it but I did and I haven't been able to find it since then.

This is all reasoning I am giving for not knowing what was on our website.  I mean it's amazing.  Good job, guys.  Ya'll are doing great.

So my dilemma is this; do I continue to list resources?  SurviveDat is doing a great job of it.  So are a lot of other websites.  Should I just post links to those websites?  What do I do with this, this great idea that already exists?  Then I think, there are more then just SurviveDat, I could just be a different website, an additional resource.  Ugh.  Confusion.

So this has made me down on myself and made me question my excitement and my point.  Should I just keep this as a blog dedicated to young women with breast cancer, and that's it?  Guest bloggers, different kinds of stuff like that?

My brain hurts.

Chemo Day!

As the title says, today was chemo day.  Fun times as always.  Don't get me wrong I love my doctor, my nurses, receptionists, phlebotomists, medical assistants, schedulers.  I love them all.  For the past eight years they have been my "peeps" with rarely any coming and going.  Well there are new hires now and then but not many people quit.  You know you have a good team when that happens.

It's just we have to get blood out of my foot, which used to suck.  We've now learned tricks that make it not as bad, but that skin on the top of your foot is sensitive.  But I made it through that just fine.  My doctors appointment went well.  We discussed some problems, and some positives. Decided to increase my chemo and off I went to the 6th floor for some magic meds. My treatment went fine, and my nurse was not even able to get my MediPort with one stick.  Back story:  I have had three ports because they just wouldn't work right.  The one I have now has a habit of moving all around every few weeks throwing my nurses off of the game.  I have one nurse, I'll call her J, she can get it every time and has to show everyone what to do.  Life would be much more uncomfortable without J.  So, like I said, it really was a good day.

I just haven't felt well.  So getting out made me feel cruddy. But if you read one of my earlier blogs you will see that I do try and do something special on chemo days.  Today we went out to eat.  Its 'a fantastic po-boy shop called Po-boy Express.  This place has 8 inch small po-boys.  My mother and I were able to split one, get two waters and walk out spending eight bucks.  That's what I call awesome.  The po-boys are amazing too, so that was a major plus.

We ran some errands and made it home just in time for my daughter to see our cups and say "Oh!  You brought me some Po-boy Express!".  Uhhhhhhh.

Chemo days are chemo days.  I can't complain.  They don't leave me sprawled up in the bed sick as a dog (until at least the next day, sometimes not even that!) and the side effects of the drug I'm on are minimal compared to other drugs I have been on at other times.  I feel for anyone going through the hard drugs right now and my prayers are with you.  Always remember that most likely it will end soon and this will just be a chapter of your life and not the story of your life.  Always remember to have some fun, and to stop and smell the flowers.

xo

Shannon