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