survivedat: fear of recurrence

Tonight I had the blessed opportunity to go to my SurviveDat meeting at Cancer Services.  After having to miss the past couple meetings due to my M.D.Anderson trips, it was all I could do to get my butt there.  You know how it is:  "it's raining, I don't want to do anything today" or "I kind of feel like crap I want to stay home".  You have to fight all of these feelings and make yourself do stuff (at least I do these days).  It's stuff I look forward to every month but gosh darnit if it isn't raining every month on that day.

I am one happy person.  I am so glad I went.  When I tell you these are some of the strongest and most amazing women I know, I am not exaggerating.  Everyone is so supportive of one another.  I think at least four of us felt like crap but all of us were led there tonight.  Nothing was going to stop us.  Not Alyssa's radiation burns and pain.  Not Bertina's sinus headache and pressure.  Not my feeling of all around cruddiness. Not Christy's recent chemo treatment.  Not Cynara's recent hospital stay after being diagnosed with metastatic breast cancer.  Walker and all she was there.  That really says something about this group. 

We are like family.  Sure, we would rather not be in this club at all.  We would rather not have cancer.  We would rather not be dealing with what each of us has gone threw but we can't change it, we let it empower us.  

There was a guest with us tonight, an oncologist, there to answer any questions we may have and the topic was "fear of recurrence".

Three of us don't have to worry about that anymore.  We have metastatic breast cancer and we had fears at one point but they have been faced, or in Cynara's case, are being faced.  It really says a lot that all three of us showed up for this meeting when it was a topic we don't have to deal with anymore.  At least I thought so.  

What it did do was give me flashbacks to when I was first diagnosed and my fear that it would return in the other breast and my absolute panic attacks about the subject.  In all honesty, I respect these women.  I lived in fear those few months before I got diagnosed again.  I tried to knock it out of my brain, to give it up to the Lord, to believe in His divine healing.  I tried, I tried, I tried.  I wasn't as strong as these ladies are.  They all talked about how they cope and I could see that none of them felt the way I felt nine, ten years ago.  

If I would have been asked this question in this support group back then I would have cried.  I would have let it all out and just boo hoo'd.  I'm telling you, these girls are strong.  They already have the peace that took me a couple years to develop.  I was strong and fierce on the outside, but on the inside I was a basketcase.  At home I stayed in tears when it was just me.  Anytime I could find alone time I cried.  I cried and I cried and I cried.  In the shower.  In the car.  In the kitchen.  Spending time with Madisyn and reading her favorite book "Mommy's Head Tickles".  I couldn't make it through the first page without crying.  I hid this side of me from everyone but my mom and Madisyn.  At first.  

Over the years I have learned to cry on other peoples shoulders.  My sister, for example, my best friend at the time, These are tears for other reasons.  But still tears that were falling.  

Dealing with the fear of recurrence can be a crippling ride.  If you aren't careful you can let it take over your life.  I can't say enough about therapy and anxiety medication.  Plus prayer.  Prayer is very powerful, but sometimes prayer needs a little help from modern medicine.  At least for me, I did.  Anxiety medication has been a Godsend and I fully believe God sent us doctors and scientist to do their work to complement His.  So be aware of your feelings, or your loved one's feelings, your friend, or family member.  They may need your help in recognizing that they need help.

xoxo

shannon

Kelli's Kloset

Today I would like to take the opportunity to share a resource that I learned about a couple weeks ago.  It's called Kelli's Kloset.  This has become a resource that means a lot to me.

The story of how it got started goes like this:

Kelli Richmond, while going through cancer treatment, was having to buy clothes left and right because of the way her body changed during each different treatment she was taking.  One day, at the doctor's office, she noticed a lady with her skirt pinned up with a safety pin.  It was at that moment she realized how lucky she was to be able to be in a situation, where she didn't have to worry about finances and was able to buy clothes when her body changed.  She vowed that she would open a non profit organization that gave cancer patients free clothes.  Kelli didn't live long enough to see her dream come true but her family took her dream and ran with it.  The doors opened June 7, 2014.

They even have something called the $1000 monthly birthday wish, where one ovarian cancer patient is gifted with $1000.  What an amazing organization.  The monthly birthday wish may not include breast cancer but I'm sure you know someone going through ovarian cancer that could sign up.  Here's the link to the birthday wishes, Kelli's Kloset.

This resource means a lot to me for a couple of reasons.  No, I didn't know Kelli personally, but an ample amount of my friends did and when she died it was felt all around this community.  My heart broke for this family and for all of her friends.  Some I was very close with, and I saw the pain when she passed.

Another reason is because this is the best idea ever.  This girl right here (me), weight has fluctuated a good 80 pounds since I was diagnosed.  Depending on my treatment I may gain weight (which is where I am at right now) or I may lose weight.  It goes up and down like a yo yo and I appreciate this organization so much.  I wish Kelli could still be here to see her dream come true and see the lives she is changing.

Lastly I want to say thank you, Kelli.  You amaze me, even from the grave.  Also, thank you to her family for making this dream come true, and for all the volunteers that make it happen.

Kelli's Kloset is open Wednesday's and Fridays 10-4 and Saturdays 10-2.
It is located at:
4560 North Blvd
Baton Rouge, LA

xoxo

shannon

Third Annual YBCS Conference

This week I had the honor of representing the young women with breast cancer in Louisiana population at our latest Young Breast Cancer Survivor Advisory Council.  I have had the privilege of playing this role since the beginning of the Council.  It blows my mind that people would possibly want my opinion on things. I absolutely love it.  This is the Council that oversees SurviveDat, the young women with breast cancer support group.  I have met some of the most amazing women in the support group and by participating on the Council.  I don't know if I've mentioned this yet but we have expanded to include a support group in New Orleans and Covington plus groups in Mississippi (SurviveMiss) and  Alabama (SurviveAL).  An incredible feat we are proud to have accomplished.

This past April, I was a recipient to a scholarship that allowed me to attend the Third Annual YBCS Conference, in Birmingham, Alabama.

This was one of the best decisions I have ever made.  My mom and I hopped in the car and drove the six hours to Birmingham.  I swear my mom is Super Woman unveiled.  She gets pulled left, right, left, right to be my chauffeur.  Anyway, the first night we relaxed.  A couple of the girls and I went out to eat and visited and I really enjoyed myself.  I let my mom stay and rest after that trip.  She wasn't really up for it.  After that we went back to our respective rooms to rest for the early morning schedule.

The day was amazing.  I'm sad it's only a one day conference, but I know with time it will get bigger.  There were break out sessions, booths, a chosen speaker, and Barefoot Soul Yoga Dance!  That last one kicked ass.  Well, if you don't know, I am on oxygen.  I took my oxygen off and got down.  It was so much fun.  I almost felt normal.  As soon as it was over I had to rush and get oxygen.  It was worth it.  There were moments the leader showed us what to do and free dance at times.  It was something that broke the smile out of me.

When it came time to leave I felt refreshed, and ready to conquer the world.  If only those feelings last forever.  It was worth the trip and if you ever get the chance to participate in the Annual Conference, do it.  I wish I was still there.

Even if only one life is changed because of this group, it's worth it.  I know way more than one life is changed because of the group, especially mine.  I couldn't make it without the girls.  They are all such beautiful people, inside and out.  So if you have a friend diagnosed with breast cancer at a young age, send her our way.  If needed you can contact me but I do have a link in the blog.  SURVIVINGDAT!

shannon xoxo

LBBC ANNUAL FALL CONFERENCE

ANNUAL FALL CONFERENCE

Breast Cancer Today:

Individual Treatments, Shared Experiences

Friday, Sept 18 - Sunday, Sept 20

Denver Marriott City Center, Denver CO

Presented by LIVING BEYOND BREAST CANCER

Register Here

Conferences are a great way to learn about new forms of treatment, support both emotionally and spiritually, meet other survivors just like you, and learn some different ways of dealing with symptoms.  I have never attended a conference and then regretted it after the fact.  This specific conference is dealing with three different tracks; Triple Negative Breast Cancer, Hormone Receptor Positive or HER2+, and Metastatic Breast Cancer  With many different keynote and plenary speakers and a full three days of activities it should be a great time.  Let me know if you go!  I want to hear all about it!

If only

This is something I haven't written about on here yet.  I've written drafts on my computer that never get posted.  I always felt it was something only I dealt with, something only I felt, and something only I dwelled on at times.  Today I decided that was all bullshit.

Have any of you ever thought about the "if only"?  The if only I had noticed I suddenly started needing more sleep, and started napping ever chance I got.  If only I didn't think that little thing I felt was nothing but a blocked milk duct, even though you stopped breast feeding a year ago; you had read about it happening, probably in some magazine or online, somewhere.  Plus, young women didn't get breast cancer.  You knew that because you read the risk factors, and it clearly stated that older women got the disease.  You checked off all the risk factors and there was no way you had breast cancer, so you ignored it.  These are just a couple on my "if only" list. 

They come to me at the most random moments.  Just tonight, after I showered, was getting ready for bed and was in the middle of brushing my teeth.  While brushing my teeth an "if only" struck.  Why?  It's been ten years.  Really 9 years 11 months.  June 23rd or something like that is my official ten year anniversary.  It blows my mind that after ten years with cancer, and chemo's, and radiation treatments, clinical trial after clinical trial, PET/CT scans like crazy, almost as much as ultrasounds, and a new set of boobs later "if only" still pops into my head. 

We are constantly told, it's not your fault.  There's nothing you could have done to prevent the cancer.  For breast cancer, they really just don't know.  You were young, healthy, at your prime, and BOOM!, it all blows away.  So why do the thoughts of "if only roll around in our heads at random, messing with our minds.  I know I can't be the only one who has this problem.  Why won't our brains just let us heal?  Why won't our brains just let us be happy and live life without the invading thoughts of "if only"?

I have more "if only" thoughts than I have medicines I take, and believe me, that's a lot.  It's really just a list of "if only" thoughts that haunt me.  I believe I have thought of all the "if only's" and they are on shuffle.  There is nothing I can do about it now, so why do they still plague me?

 Maybe it was the three months of your life that you were on birth control.  That is actually written in my chart, saying the fact that I took birth control for those three months, it is actually a factor for my getting breast cancer.  Three months.  It's just one of those things they have to ask, just like "do you have any family history of breast or ovarian cancer?".  So, in my chart it credits birth control.  But from my all of my doctor's point of view, it's a mystery.

It's a subject that bounces into my head at the oddest moments.  What about you?  Do you think about the "if only's" or are you fully grounded and able to block those thoughts out?  We are all different and deal with everything different.  I just wonder if I am the only one who thinks this stuff sometimes.  I know my "if only's" aren't the same as yours but it's good to know I'm not the only one out there.

xo


Shannon

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

YSC Summit 2015

A couple weekends ago I was somehow able to attend this years YSC Summit.  It's a yearly conference for young women with breast cancer.  I say somehow because so many things stood in my way.  First, I applied late for the free registration.  I emailed the YSC "contact us" email and explained my situation and they replied saying they were extending the deadline and that I was approved.  YAY!  I was really excited about going because in 2012 when it was called C4YW (because it was partnered with Living Beyond Breast Cancer) it was held in New Orleans, which is a stones throw from Baton Rouge, where I live.  By the grace of God some women donated money for our traveling and hotel and myself and a fellow breast cancer survivor headed to NOLA.  We had an amazing time.

So this year it was in Houston.  Houston is my second home because I go to MD.Anderson's there for treatment.  I thought, no way I'm missing it!  That left me needing to find a way to travel there and a place to stay when I got there.  The girls I know, all from SurviveDat, had a full car so I was stuck.  Lo and behold we had a rep from SurviveDat going to advertise SurviveDat with a booth.  She let me hop aboard her ride but she was recovering from a cold or virus or something and didn't think staying together in a hotel room would be beneficial for me.  So there I was, free registration, a ride there, but no place to stay.  I tried YSC chat rooms, I tried everything I could think of, to no avail.

But then BOOM!  Suddenly the week before the conference I land in the hospital with kidney failure.  I mean come on!  I wanted to go!  Fortunately I recovered fast and in time for the conference and just in time to think of a plan.  I sweetly asked my aunt and uncle if I could stay with them (45 minutes away from the conference) and would they pleaseeee bring me back and forth each day for the conference.  And they said yes!  It was so great!  I had it all figured out, finally.

My schedule for the conference included all classes on Metastatic Breast Cancer and one nutritional class.  It rocked.  How cool was it that they had so many classes for the Metastatic Breast Cancer Survivors!  It was like I was home.  With all  my sisters.  All of us together class after class.  We discussed so much, learned so much about each other and everyone's journeys. So many of us with the same feelings, the same histories, it was really worth the effort.

Because of my recent hospital stay, and the fact that I'm on oxygen kept me from staying for the dancing and the parties.  To be honest I was tired by the time I made it up the elevator to the conference.  Much less during the conference.  But I made it through it and am so happy I did.  I learned so much and can't wait to share some of it with you!

Here's to hoping I get to go next year!

xo

Shannon

13 ways to make every day matter!

13 ways to make every day matter! 

 Guide to Metastatic Cancer: Moving forward with hope.  HealthMonitor.com/MetaCancer

pages 23-25

1. Create your own healing space. Seen The Fault in our Stars?  Doesn't she have a wall of things she likes?  I will have to rewatch to see but I think she does.  But the example in the article talks about a lady who painted the walls of her study bright rose and the doors grape purple-colors that make her feel happy and energized: "Surround yourself with images and inspirational sayings that help you feel loved and remind you of joyful relationships and times"
2. Get a handle on your treatment.  The article discussed learning as much as you can about your diagnosis, your treatment, and just fill yourself with knowledge so you know how to understand what you are going through.  I talked about this in a previous blog.  It's a belief I am very passionate about.  Be a voice in your care.
3. Reward yourself after scans.  They call it "scanxiety".  It's the first and only time I've heard that term but I love it.  They mention, a nice lunch, a shopping trip, something to life your spirits.  I practice this ritual lol.  Well when I can and my mom allows (not being able to drive anymore sucks, more on that another time).  My mom and I do always do some form of lunch, whether it's at the hospital cafeteria (M.D.Anderson's don't play in their cafeteria, it rocks) or at the burger joint down the street or our favorite seafood restaurant around the corner.  After the long day of fasting you deserve a nice lunch, really it's kind of a necessity, normally you have had to skip breakfast!  We also sometimes try to go to the movies, which are at the mall, where we stay when we go to Texas, plus Barnes & Nobles!  My favorite place ever.  Manicures and massages could be fun but some treatments don't allow, and hair appointments may be quite silly if you are lacking hair.  Well what are some things that you do?  Message me and I will post them.
4. Practice Gratitude.  Write down at least one thing each day that make you smile, laugh, or feel uplifted.  Open your eyes to the good things that happen in your life during tough times.  It can help you find happiness in your storm.  I, myself haven't practiced this one but it sounds like a good one, I should start.
5. Don't forget to laugh!  You will read this everywhere.  It certainly has gotten me through some emotional breakdowns.  Comedies, comedies comedies.  For awhile, no matter how I felt I put on a comedy, because I never knew how I would feel ten minutes, or thirty minutes into the movie.  If I was watching something absolutely ridiculous then it didn't matter, I would be laughing no matter what.  Have a good laugh with friends, your doctors, your medical team.  My doctors probably think I'm crazy, every time they give me bad news I laugh my ass off.  It works for me.  I found that if I let it get me down I would stay down, I get bad news a lot.  I discovered that if I just find the ridiculousness of my situation I get my laughs right there in the doctor's office.  I laugh at the irony.  The probability of this happening, and to a young woman to boot.  Heart failure again, laugh.  Kidney failure again, laugh.  Twelve more tumors, laugh.  I can't help it anymore.  I get crazy eyes from my doctors.  I think they think something is wrong with me lol.
6. Absolve yourself!  "There's the sense you did something wrong.  You didn't have (a screening), perhaps you ate the wrong food or didn't take care of yourself.  Cancer is not your fault!"  This, right here, is something that held me down for years.  I did have the feeling that I did something wrong.  Like, "why didn't I notice the lump sooner?" or "when I found that tiny lump, why did I think it was a blocked milk duct two years + after I stopped breastfeeding, and again later when I found it again, why did I ignore it and completely forget about the previous time I found it which I remember perfectly now?"  "Why did I stop going to the gym six months before?" "Why did I ever start smoking?" I could literally go on and on.  I came up with every reason under the sun to blame myself.  But being told, there was just something wrong in your immune system to begin with, and "we have no idea what causes breast cancer" both made me feel better.  What doesn't help matters for me is going to conferences that try to talk about breast cancer prevention.  They talk about diet mainly and I know for a fact that it doesn't matter how healthy your diet is, you are still susceptible.  Over these years I have met women on perfect diets, or organic diets, all who got breast cancer.  There really is no rhyme or reason, so stop blaming yourself.  
7.  Treat yourself on treatment days.  "It's always good to have something to look forward to"  The girl in the article talked about every day on her radiation treatments she bought herself a scratch-off lottery ticket.  She said it made the day a little better.  I've had so many treatment days over the past ten years that it's been near impossible to continue to treat myself on treatment days.  I guess some days the treat would be the nap, later.  More recently, my mother and I try to go eat on occasion.  We try to find coupons to places and go try them out.  Maybe I will try to incorporate more treats for myself on treatment days.  I deserve it, as do you.
8. Hang with others who "get" you.  Find a local support group or go online for support.  Or in my case, create a support group for young women with breast cancer as I did.  There wasn't any and I needed one.  I had to stop after a couple years because treatments got harder and I couldn't find someone to take the reigns but through a grant from the CDC, LSU and Mary Bird Perkins Cancer Center were able to make support group for young women with breast cancer.  I was invited to sit on the board, which I do, along with attending the meetings every month.  It's called SurviveDat and has extended to include a Mississippi chapter and an Alabama chapter.  Amazing is all I have to say.  My favorite time of the month is seeing all these beautiful women and hearing them share their stories and sharing mine.  They can get quite emotional at times and it's so great to talk to people who understand.  Online is no different.  Forums can help just as much.  I've tried both, and both have helped in different, but no less important ways.
9. Find your mantra.  When I read this it always reminds me of Ally McBeal.  Watch it.  So funny.  This can be a saying or expression that gets you through.  "Life is good, even when challenging or painful" is one listed in the article.  Another is "It matters less what I feel than what I do with what I feel".  Mine for the longest time was, "All things are possible through Christ." from, you know, The Bible.  But another that has stuck with me for a long while too is James Dean's "Dream as if you'll live forever.  Live as if you'll die today".  There are others I have had that have helped through it all but those are the two that stick out in my mind right now.  What are some of yours?
10. Spend time with family.  I'm not even going to talk about what they say in the article and I'm just going to tell you about my experience.  Before cancer I worked.  I worked, I worked, I worked.  Then at one point I decided to go to school.  So I started working, and going to school, and working.  My daughter was forever being shuffled from this person to that person (friends and family).  When I was still with my ex he stayed home with her after picking her up at daycare.  But when I got cancer, it all came crashing down on me.  The knowledge of what was really important in life.  That little girl I so often asked to go to her room and play while mommy had big girl fun with her friends (just wine, or margaritas and sex and the city) was the most important person in my life.  As much as I wanted her to leave me alone sometimes, she was the one person I should want around.  I was in a crumbling relationship that didn't hold up after the diagnosis and it was me and her against the world.  Not only that, I see my family more, the local ones at least.  More then just on holidays.  I even visited my sister in Chicago after diagnosis.  She had only been there ten years probably.  Maybe not that long, I don't remember.  Just remember who is important.  Who will always be there.
11. Keep perspective.  Remember that no matter what happens, there is always another drug you can try.  Don't fret.  I always ask myself, "what's the worst they can tell me?  I have cancer?  Well been there done that, got a billion t-shirts, so bring it on!  I got this!"  You do have this.  And you have everything that comes along with it.  You are strong.  You are brave.  You got this.
12. Update your hobbies.  What activities make you happy.  Do you like to play an instrument.  Do you want to learn to play an instrument?  Do you love listening to music, going to concerts?  Watching comedies (yes please!)?  Watching or going to sporting events?  Do you love baking, cooking, cooking classes?  Even reading (check!) or playing with a pet.  How about art?  Painting?  Drawing?  Singing?  I have a friend in my support group who does salsa.  She even teaches it at times.  That's her outlet.  There is so much out there, find your niche.
13. Soak up the love and caring.  The article suggests displaying the cards and gifts you get ( something I try to do) but one thing I never thought of that they suggested is to create a simple "guest book" for friends who visit you to sign,  What a thought!  So creative!  Just take regular moments to appreciate the love coming your way.

Hope you enjoy these as much as I did!  What are some of your hobbies you started after cancer?  Some rewards or ways you treat yourself.  And some online forums you enjoy?

xo,

Shannon

"I'm in Stage Thrive!" By: Jan Smith taken from her book "Learning to Live Legendary"

 Published In:  Guide to Metastatic Cancer: Moving forward with hope 

 (HealthMonitor.com/MetaCancer)

This is just going to be a paraphrase of the article, I'm just going to focus on the focal points.  I came across this article while at my radiation oncologists office.  I found it interesting enough to keep with me for years, waiting to write it somewhere.  Yet I never read her book.  Mental note, add that to my imaginary todo list.

• Call the shots.  She explains this to mean, do what you want to do.  Go to New York City.  Go to Hawaii.  Don't put off what you really want to do.
• Do something crazy.  Pretty much, do what you wouldn't normally do.  Say yes.  
• Find the funny in cancer.  A good one.  I always try to find the humor.  Early in my diagnosis years I was so depressed but I would find the funny.  Wear crazy wigs.  Find completely inappropriate cancer shirts.  It was something I had to do to make it through.  I still try too.  She jokes about how her breasts are fake, because her real ones tried to kill her.  I totally have that on a shirt.
• Say no to drama.  Self explanatory isn't it.  Unfortunately I have had to cut out some in my life that only added to the stress in my life.  She explains that unless a person adds to her quality of life, she cuts them out.  Words to live by.
• Make an average day feel special.  Don't wait for the holidays to enjoy your family and friends.  She talks about how she now gets together with her family once a week and does pizza or a cookout.  Things that I have do, during, and after dinner for an hour, my daughter and I have "us time".  We watch our favorite shows or just talk.  But unless she has a big paper, it's everyday.  It's the best part of my life.  Plus, I spend alot more time with my parents now.  My mother and I try to go to lunch when we have doctor appointments.  Not at all, because that would get expensive but it's special when we do.
• Celebrate often-and creatively.  In her article she says when she turned 35 she celebrated the whole month.  She had dessert every day of the month.  There have been times when I have celebrated the whole month.  Sometimes I hold parties in the month that I got diagnosed, a celebration of life.  
• Put a time limit on sadness.  She explains that if she loses a friend, or has a bad scan, she allows herself to grieve.  But for one night.  She chooses not to spend her energy on sadness.  I can relate to this.  But it took me awhile to get here.  Plus plenty of medication.  So if you are lucky like her and can control your emotions without medication, go you!  But if you can't move out of your pit, talk to your doctor, request a psychiatrist.
• Believe.  She talks about how, when diagnosed with Stage IV cancer, with a 2 year old son, she chose to believe she would see him go to kindergarten.  She had it tattooed on her hand in her son's handwriting.  I have done similar things.  I believed I would see my daughter start middle school, I would see the whole Twilight movie series (but first read the books), I would see my daughter start high school,   I now believe I will see my daughter graduate high school, get married if she chooses, watch her travel the world.  Maybe even travel with her.  I believe I will see the whole Divergent movie series, and The Hunger Games too.  Of course after I have read all the books.  I really could make a whole post about believing.

I hope you enjoyed reading about some of her ideas like I did.  It always helps to read of how someone else deals.  Whether you incorporate it into your life or not, maybe one day you will remember that idea and use it.  Always be open to different ideas.

xo,

Shannon

Welcome!

Finally!  I am so excited to be posting this first initial posting.  I have wanted to do this for years and you should see the mounds of paperwork that haunt my house, information just waiting to be put down on these pages.  I hope this will be a blessing to someone, at least one of you out there, and it will be worth it.  I look forward to informing you on new advances in the breast cancer world, teaching you about where to find resources, and to one day be able to help those around the world battling this disease.  I hope this post finds you well, and if not, drink pickle juice...believe it or not it helps with nausea lol.  I'm excited and I hope you are too!

xo,

Shannon