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

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.

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