I'm Back!

I took a pretty long break from this, and I know.  Never a good idea when blogging but almost something you can't get around with cancer.  Since my last post I have had a few hospital stays, a blood transfusion, kidney failure twice, blacking out problems, skin problems that didn't turn out to be cancer (yay!), and Lord only knows what else.  I can't remember.  Plus I am the mother to a teenage girl.  Need I say more?  Didn't think so.

Good news is I made it through everything just fine.  Scared me a time or two but that was for naught, because I came out the other side just fine.

I  attended the YSC Regional Summit Symposium in January in Jackson, Mississippi.  It was a terrific wealth of information.  A mini YSC Conference.  I learned about the Patient Advocate Foundation.  A very good resource for anyone going through anything.  You can go to their website, see if they cover your condition, and then make contact.  You tell them your needs and they find help.  Awesome.  This is their description on their website:

"The Process is Simple. Patient Advocate Foundation's Patient Services provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness. "

But they also refer you to other organizations they think may help you.  A great resource.
Learning about this organization was probably the highlight of the conference besides the party that night.  Boy, the girls can get crazy lol.  

I hope this helps someone!!

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.