Wednesday, December 12, 2012

CPS-3 Champions!

The American Cancer Society is working on one of it's biggest research projects ever- A ground breaking study that will have an enormous impact on our ability to prevent cancer and create more birthdays!

Tell people about it!
#beaCPS-3Champion

What is CPS-3?
The American Cancer Society will be enrolling participants in CPS-3, their newest research study.  CPS-3 (Cancer Prevention Study-3) is a landmark research study that offers those who have NEVER been diagnosed with cancer, the unprecedented opportunity to advance cancer research by participating first-hand in a cancer research study.  The study will help researchers to understand the lifestyle, environmental & genetic factors that may cause or prevent cancer.

What is a CPS-3 Community Champion?
CPS-3 Community Champions educate their friends, family and community about CPS-3 and help to promote and drive community enrollment and participation in this lifesaving study.

Who can be a CPS-3 Community Champion?
EVERYONE! can be a Champion and help get the word out.  Whether you are cancer free, a caregiver, a cancer survivor, an avid fundraiser for a cure, or interested in honoring friends or loved ones, you can be a champion.  No fundraising is involved.

General Responsibilities:
  • Work with local staff to promote CPS-3 enrollment to your personal and professional network
  • Engage a minimum of 25 qualified individuals in the study
  • Participate in the CPS-3 conference calls weekly
  • Communicate progress regularly to designated lead
  • Understand the long term commitment participants are making to the study
  • Follow the research protocol for the study as laid out by ACS

Time Commitment:
2 month time frame, 1-2 hours per week

If interested, in being a Champion, please contact Laurie Frey at laurie.frey@cancer.org or by calling 301-514-2783

Tuesday, December 4, 2012

I'm Normal!

I know, that's funny, right?  My DEXA scan was normal and it doesn't appear that I have any signs of osteoporosis!  Now if only my legs would heal.....

I got back to the Orthopedist Dec. 17th for a follow-up/plan of action.  I have been in the walking boot for 4 weeks and I still can't walk much without it before the pain set in.  Sometimes its my ankle, sometimes its  my shin, sometimes it outside of my knee.  All probably from the high and low fractures.

At this point, I hope I can run the Race for the Cure in May!  LOL.  Swimming and biking until then and trying to love it.

Thursday, November 29, 2012

DEXA Scan

I went today for my DEXA scan to confirm or rule out osteoporosis.  It was super quick, and painless.  You don't even need to get undressed.  I should have the results tomorrow or Monday.  I am hoping for the best!

On another note, today is my mother's 62nd birthday.  I miss her so much. 

Thursday, November 8, 2012

No Longer Running for my Life

I was dreading this day for a while now.  I have been unable to effectively stop the pain in my legs after running.  I have been seeing an orthopedist who treated me for tendinitis, shin splints and finally ordered an MRI to get a full picture of what was happening.  I have multiple fractures and pre-fractures in both shins.  I cannot run for at least two weeks while the fractures start to heal.  I have to go 14 consecutive days without pain over a 3/10.  Should I have pain, I have to start over the two week period.  Today doesn't count since I am in pain.  I have a walking boot on my left leg.  Funny enough, you can't wear two boots, so despite having fractures in both legs, I have the boot on the one that hurts right now since I had to pick just one.  Just call me Captain Lieutenant Dan!

While I can't run for my life, I will bike and swim for my life.  I MUST keep my weight under control as with menopause I am at increase risk for heart disease.  Further, this could all be related to my menopause.  The doctor is seeing signs of osteoporosis.  He said he just doesn't see this extent of injury in women my age with my stature.  I am going to be regimen in my hormone and vitamin therapy daily.  I am also going to look into calcium pills, and Boniva (think Sally Field commercials).  When I go back to the gynecologist, I am going to ask about tweaking my hormones again. (I called today and they are probably going to order a bone density scan to rule out or confirm osteoporosis) 

I have having a hard day emotionally.  I feel like, while I am glad I made the decision to have an oopherectomy, and I do feel it saved my life, I am frustrated with the after effects.  I am frustrated with not being able to do the activities I want to do. 

Thursday, November 1, 2012

Mastectomy Tattoo

It has been too long since I wrote.  I am happy to report that there is absolutely nothing to report.  I think about this blog often, but I just don't have any new information I am burning to get out there.

Recently, I have been thinking about my tattooing and my options.  I could go with nipples.  I could get flowers.  I could leave my albino breast alone.  Ray really doesn't care one way of the other.  I personally don't either....right now.  But I have been looking more and more into mastectomy tattoos. 

I think I like the idea of having a nipple on one side and a special meaningful tattoo on the other.  I could post pictures of examples, but then I would have to change this to an "adult only" blog.  So instead, I am going to urge you to look up on google, or Pinterest or wherever; mastectomy tattoos.

Ray is talking with an artist we have used before.  I want the right artist for me and someone that understand the significance of this piece and also understands my story.  I need someone that is comfortable working on a breast and can work around an implant. 

My idea is a vine with flowers representing each day the children were born, my mother's birthday and Ray's.  These are the people I started this journey for.  The vine would be vertical along my side with an angel representing my mother at the top near my neck and the word courage just below the crease under my breast.  All of this would be intertwined to create one piece.  I am very excited about it.  Although I have NO idea when it will get done.  We don't typically have tattoo money laying around.

The nipple on the other side is free through insurance and I have to schedule that with the licensed nipple tattooer at my surgeon's office.  What have my other previving friends done? 

Tuesday, October 9, 2012

Hey Frederick Moms!

Join us in the Frederick Chapter of "Moms Run This Town"!  We are official!

Find us on Facebook under "Moms Run This Town Frederick County"
Find us on the web: http://www.momsrunthistown.com/chapters/MD-fredrick.php
E-mail us: FrederickMRTT@yahoo.com

Run for your life; I'm running for mine!

Thursday, October 4, 2012

The Pink Challenge

It's October!  You know what that means...Breast Cancer Awareness Month!  My favorite coloring being pink really helps in this month.  I love it.  I want to challenge each of my readers to wear some form of pink everyday this month.  Easy Button: Paint your nails.  Pinterest has oodles of ways to cut out, or paint a ribbon on one nail while the others are just pink.  Perfect.  No words needed, they speak for themselves.  Pink yourself and paint the town pink!  Share your pink ideas in comments :)

Monday, September 24, 2012

Running for Sam!

I used to teach a student named Sam. Sam had brain cancer and passed away at age 15 this past August. Our school is teaming up to raise money for the Childhood Brain Tumor Foundation in Sam's memory; the CBTF is hosting a 5k in Chevy Chase MD. It's $30 to register and if you are one of the first 10 to register with team "Clarksburg Coyotes", you will receive a free team tee shirt. Help me support Sam! He was an amazing child that I will never forget! Here is the info:

 http://www.active.com/framed/event_detail.cfm?CHECKSSO=0&EVENT_ID=2021791

Tuesday, September 18, 2012

BRCA Article in Fitness Magazine!

Here is the link.  I am not sure if this is the full article.  It seems incomplete to me.  But you can get a sneak peak at several women's stories regarding breast cancer, BRCA, surgery and life afterwards.  Articles like this are a huge step in awareness and empowerment of women and men to make better and informed decisions regarding their personal relationship with cancer and cancer risks.  You may have to create an account to view the article, but it is free.  Enjoy!

http://www.fitnessmagazine.com/health/conditions/breast-cancer/my-battle-with-breast-cancer/?page=1

Monday, September 17, 2012

Giving Thanks


I made it to another birthday. Birthdays are a funny thing these days; I have a new appreciation for each and every one. I look forward to them like milestones. I am so thankful that I will have many birthdays in my life and while I may succumb to other tragedies, I am thankful that cancer is probably won't take any birthdays away from me, my children or my family.

This birthday was particularly amazing! Ray and I had a fantastic date night. We laughed so much and just really had fun together. The kids and I enjoyed P-Ville Day, as usual. Watching them get overjoyed at pony rides, face painting, cowboy hats and hair bows just warms my heart. I am so thankful that I have these amazing beings that I get to watch grow and mature. I am thankful that cancer won't steal away any of their time with me.

My dad also took me out for a shopping day today, just him and me. It was truly an overwhelming gesture of generosity and love. I have minimal clothes that fit, aren't tattered and appropriate with the season. I have even less shoes and belts and other accessories. I just don't have the time or money and with my changing size, I just can't keep up. This was a priceless day, not just for the clothes and shoes, but for the feeling of love and care. He really thought of something that would make my year, not just my day. I am so thankful that I had such great parents and role models to teach me generosity, and kindness to others. It breaks my heart that cancer took away so many years I could have been with my mother. These days are always hard regardless of the time past. But to have such an amazing father to help fill the void is priceless.

I had to smile today as I keep coming out the dressing rooms and requesting smaller sizes. I was wearing a size 2 today! I didn't buy them. I like to sit in my pants :) But I did buy 4s and small shirts. In addition to the overjoy in size shrinkage, I also purchased two new pairs of running shoes just in time for my 10K race next weekend. Bring on those Baltimore hills! I am ready!

Thank you for being loyal readers. I love that I don't have much to write these days. I am thankful for my health and peace of mind in this journey. No news is good news and I am overwhelmed with thanks for no news!

Sunday, September 9, 2012

Down to the Wire

The 2012 Race for our Kids is in 2 weeks!!  This race supports childhood cancer treatment and research in Baltimore, MD at the Herman & Walter Samuelson Children's Hospital at Sinai.  This will be my first 10K race (so automatic personal record).  My goal is to raise  $250.   If you can and choose to support me and children with childhood cancer, you can pledge HERE.

I can't wait to type out my results.  I am going for a 60 minutes-ish finish.  That's roughly a 9minute 40second mile average.  Its a hilly course, but if there are up hills, there are down hills! 

Tidbit of good news: The plastic surgeon's office called.  The tatooer is in the building! 

Sunday, September 2, 2012

September is Ovarian Awareness Month

I honestly believe in the good of "pink" and the breast cancer awareness campaign.  I believe in the fight and the amount of resources and research committed to ending breast cancer because of "pink".  But in my heart, I wish the same attention was brought to all cancers.  Ovarian cancer took my mom's life 3 1/2 years ago.  It does all women and all of mankind justice to educate ourselves and our loved ones and friends about all the cancers that can affect us.  Pink is great.  But so is almost every color of the rainbow and more that represent other cancers.  Teal is for Ovarian cancer. 

September is the month designated for awareness of many types of cancers, including Childhood Cancer, Ovarian Cancer, Gynecologic Cancer, Prostate Cancer, Leukemia & Lymphoma, and Thyroid Cancer.  Pick one and spread the word!

All CancersLavender
Bladder CancerYellow
Brain Cancer
Grey
Breast Cancer
Pink
Cervical Cancer
Teal and White
Childhood Cancer
Gold
Colon Cancer
Dark Blue
Esophageal Cancer
Periwinkle
Eye Cancer
Green
Head and Neck Cancer
Burgundy and White
Kidney Cancer
Orange
Leiomyosarcoma
Purple
Leukemia
Orange
Liver Cancer
Emerald
Lung Cancers
White
Lymphoma
Lime
Melanoma
Black
Mesothelioma
Royal Blue
Multiple Myeloma
Burgundy
Ovarian Cancer
Teal
Pancreatic Cancer
Purple
Prostate Cancer
Light Blue
Sarcoma/Bone Cancer
Yellow
Stomach Cancer
Periwinkle
Testicular Cancer
Orchid
Thyroid Cancer
Teal, Blue, and Pink
Uterine Cancer
Peach
Honors Caregivers
Plum

Sunday, August 19, 2012

Humblings

This has been an exceptionally hard week for the Hartman family.  We had two family members waiting on news of potential cancer.  The waiting is always the hardest part.  I am extremely happy to say that as of right now, neither case resulted in a cancer diagnosis.  As happy as I am about the outcomes, I am humbled by the experience.  Cancer is everywhere and can come about when you least expect it.  I can't forget that despite lowering my risk of breast and ovarian cancer, there are other cancers I am still as susceptible as anyone else to developing.  And, worse, those around me, those I love the most, are also at risk just like anyone else.  There is no immunity in this fight.  I am thanking whatever higher power there is for such great news for my family.  But I am also remembering that these victories don't end the larger war.

Saturday, August 11, 2012

Long Overdue Update, AND, Exciting News

Long Overdue Update:
I went to Baltimore last Wednesday for one of my annual follow-ups.  Everything is absolutely perfect....except!  The P.A. that typically does the nipple tattooing is no longer dong them and the office hasn't found a replacement....yikes!  So I got the name and card of someone called "Wild Bill" who is licensed to do nipple tattoos....(please read with skepticism).  I might be albino nips for a while longer. 

Exciting News!
A few months ago I was contacted, via this blog, by a grad student in Journalism writing her final project.  She was wanting my perspective and experience with BRCA and surgery to write a portion of an online magazine called Twenty-Something.  You can view the article by downloading, for free, the app "Best of Newhouse".  The article is called "An Inherited Dilemma".  I think she did an amazing job!

Tuesday, July 31, 2012

Fantastic, Funtastic, Runtastic

I had a great run tonight.  8 miles!  I felt so strong and I had a lot of time to reflect on my last year and how far I have come in running, fitness, health and quality of life.  Everything is stronger now (Well, except my job.  That's my low point). 

I hope to run the next two days before my rest day and then continue this summer until my 10K in September.  My goal is 1 hour, and by the looks of this run, I completely think that is doable.  Here are my splits.  I can't believe how fast I was at the end!

  • Mile 1- 11:34 Warm Up
  • Mile 2- 10:54
  • Mile 3- 10:27
  • Mile 4- 12:10 (includes 2 minute re-fuel break)
  • Mile 5- 10:10
  • Mile 6- 10:03
  • Mile 7- 9:58
  • Mile 8- 10:03

We get back from South Carolina Friday evening.  My next appointment in Baltimore is next Wednesday (the 8th).  I'll definitely update for that follow up. 

Monday, July 30, 2012

Amazing South Carolina!

We are at Seabrook Island this week. Wow, this place is amazing! We saw dolphins strand feeding this morning, horseshoe crabs, hermit crabs, alligators in the pond behind our house and turtle hatchlings. Here is a short clip of the dolphins, something this place is known for.

Thursday, July 19, 2012

Blog Facelift

I was thinking yesterday that I am really moving into a very positive place with my BRCA recovery and I am really enjoying the connections I am making with people through this blog.  I can't tell you how meeting other women and making connections on something I am so passionate about makes any time spent or aggravation with blogger worth it! 

I loved my old template because of the flower reflection.  I liked that it was two side of the same "face" so to speak.  I also liked the pop of color and a lot of black because that's how I felt.  Now, I feel much less dark, scared or sad.  I feel confident and strong.  I liked this template because it still has the same flower symbol but in a more positive scheme. 

I am also working on a new section for running and various fund raisers.  I will be part of Relay for Life again in Clarksburg for 2013, but I will not be the chair of the event.  So be looking at the "pages" now listed to the left side (not tabs at the top) for that new section! 

Thursday, July 12, 2012

What is a Survivor?

I always, and will always, call my mother a survivor of Breast Cancer.  She survived!  She is a survivor.  However that is personal to me and I am not offended by other interpretations of labels.  I call myself a previvor for example although there is some resistance within the community that the term is offensive.  I find that any attitude that promotes competition among members of this community, whether the memeber a care-giver, previvor, patient, or survivor, only promotes mutiny.  Competing over who is more or less a survivor, or deserving of support only internally weakens the group.  We need to come together under the common characteristic of passion to prevent and find a cure for cancer.  And internal mutiny means cancer has won because the fosuc is then on labels and attention rather than research and education.  I try not to get to concerned over labels.  If you use them or not, I don't care.  

This article is a great article and I love the perspective.  I think calling yourself something, whether a care-giver, co-survivor, previvor or survivor is just another step in the journey.  There are steps many of us take, but sometimes we take them in different orders, or we skip them all together.  I think the "label" (whichever it might be) is just this kind of step.  Some people take it before other in their journey and some never take it at all.  And that's okay!  It doesn't change their memebership to the community.

Please take a moment to read: "Life, Interrupted: Am I a Cancer Survivor?" by SULEIKA JAOUAD

Hey New Yorkers!

This coming weekend you can participate in Ovarian Cancer Awareness Day!  I am SO jealous!  If I had more money, I would be traveling north for this day.  HERE is the information.  Also, in New York, you can participate in the T.E.A.L. Ovarian Cancer Walk in September.  Find out more information HERE.  


I always thought of Ovarian Cancer as a "silent killer".  In fact, this page is a great resource.  In fact, while it was historically thought to be silent due to vague symptoms that resemble other female issues (menstruation, infection, menopause, etc.), the key is the persistence of the symptoms, rather than just the experience.  


These lists are taken from the website found HERE:

FACTS:
  • There are NO effective pre-screening tools for ovarian cancer and a pap smear will NOT detect it.
  • Ovarian cancer is the leading cause of death from gynecologic cancers in the United States and is the fifth leading cause of cancer death among U.S. women.
  • In 2011, it is estimated that 26,000 women in the United States will be diagnosed with ovarian cancer and 15,000 women will die from the disease.
  • Approximately 174,236 women living in the United States currently have ovarian cancer or have a history of ovarian cancer. Women are usually diagnosed in advanced stages and only 45% survive longer than five years. Only 19% of cases are caught before the cancer has spread beyond the ovary to the pelvic region. Despite aggressive surgical intervention and new chemotherapeutic regimens, the overall 5-year survival rate for women with advanced stage ovarian cancer has remained constant over the past 30 years, at approximately 15%. However, when ovarian cancer is detected and treated early on, the five-year survival rate is greater than 92%.
 
SYMPTOMS:
The symptoms are generally subtle and vague so that women ignore them.The key is that the symptoms last more than 2-3 weeks and are otherwise unexplained. 90% of women with ovarian cancer reported having some of the following symptoms:
  • Digestive problems: gas, flatulence, bloating, loss of appetite, occasionally abdominal pain.
  • Abdominal pressure or discomfort.
  • Changes in bowel and bladder habits (e.g. urinary frequency, diarrhea, constipation).
  • Pain (less common) in the lower back, pelvis or legs.
  • Abnormal vaginal bleeding.
  • Unusual fatigue or backaches.
  • Unexplained weight loss or gain.
  • Shortness of breath.
  • Increasing waist line size, for no obvious reason.

Wednesday, July 11, 2012

Running for Little Lives

In my journey through BRCA2, "previvorship" and fitness, I registered for a my next 3 races.  I have a small and hopefully fast 5K next weekend right here in my town.  In August, I am stepping up for a 10K in Annapolis followed by a 10K in September in Baltimore.  The first race is for local high school scholarships in memory of a local woman who served as a coach at the local high school.  The second race is for multiple causes, but most notably the women and children's shelter and programs in Annapolis.  The last race is the 2012 Race for our Kids that supports childhood cancer treatment and research in Baltimore, MD at the Herman & Walter Samuelson Children's Hospital at Sinai.  For this race, I would like to and can fund raise for the cause.  My goal is $250.  If you can and choose to support me and children with childhood cancer, you can pledge HERE.

This, as in cancer awareness, activism, research, education and every aspect of this disease is such a near and dear passion, clearly, that I am just thrilled that I have yet another avenue to participate.  I hope to run, not just for me and my health, but as a method to disseminate my passion.  I said I wanted to run for something and I am just loving that my goals are coming to fruition. 


Saturday, July 7, 2012

Skydiving!

A year ago, while sitting in my breast surgeon's office waiting to hear all the details of my big day, I saw a picture of a woman and her family skydiving together.  As I looked at the picture intently, the nurse said, "She survived cancer.  She said when she was cancer free she was going skydiving to remind her to live life."  Well, today, I lived! 

Ray planned a surprise outing today to celebrate our 7th anniversary.  Skydiving!!  Here is the video.  It was just an amazing experience that I will cherish forever. 

Sunday, June 24, 2012

Day 1

I started a 15K training program today.  I don't intend to race, nor have I signed up for one.  But I want to remain healthy and strong physically, mentally and emotionally.  I tried just running after the Race for the Cure, but I found myself not doing anything since I didn't have a "plan".  So here is the plan.  Ten week 15K training plan, with the 200 sit ups program and the 100 push ups program with strength thrown in there on light days as well. 

Day 1- 60 minutes cross train (20 minutes stair step, 20 minutes bike, 20 minutes elliptical), 5 sets of push ups totalling 50.  Check!

Day 2 (tomorrow)- 3 mile run, strength set and sit up sets.

Wednesday, June 13, 2012

Sit Up FAIL

I decided that I needed to add strength back into my routine this past weekend.  I got my game face on and tried doing some real, full range sit ups.  Whoa!

I guess those muscles that were sliced side to side and sewn back together from the belly button down are not really ready for my new resolution to be stronger.  I gawked at trying to do 30 sit up in a minute.  I was humbled quickly.

I guess a year later there are still things I am discovering about my new body.  Like flat but weak abs.  I have always loved ab workouts and thrived at them.  At one point I could crunch more than I could bench press.  I guess now, I have to build back up to doing minimal abdominal exercise.  Any tips?

Saturday, June 2, 2012

Offical Race Results!

Official Results:
Distance 5K
Clock Time 30:47
Chip Time 29:23
Overall Place 1118 / 4859
Gender Place 481 / 3267
Division Place 97 / 661
Age Grade 50.4%
Pace 9:28


I BEAT my REACH goal! 

We had such an amazing experience today.  Next up a 10k, and the Race for the Cure annually!

Wednesday, May 30, 2012

Five Things I Won't Apologize for...Either; Plus Some

In the June issue of Self Magazine, Miranda Lambert talks about the 15 things she will never apologize for.  I loved this self portrait of who she is and what she believes.  Here are 5 of her items that I won't apologize for either:

  1. I say what I think (and I say it to your face)-  I might be harsh, but you will always know where you stand with me. 
  2. I always scarf down food- In high school I could take a Big Mac in less than a minute.  No talking, meal time is for eating.
  3. I won't give up what I enjoy- I see no point in being masochist.  I do however believe in moderation for all things.
  4. I absolutely hate to exercises- Not sure where God went wrong, but I don't feel better afterwards, I don't find peace or "my time", actually I just really don't enjoy it.  However I love the benefits.
  5. I don't mind having a big butt- I'm Greek and I'm proud!

Here are a few to add to the list:

  1. I am a strong woman- I love a man, but I don't need a man (and my man loves this quality).  The best gift I can give my daughter is the gift of independence and ability to stand on her own two feet.
  2. My family comes first- It may cost my job or my friends, but my family comes first. 
  3. I am a picky eater- I love food, good food and it's about quality. 
  4. I am opinionated- I have an opinion about everything.  I may not say it, but if you ask, be prepared.
  5. I am afraid of the dark and bugs- I won't get over it, and I don't care if you laugh. 

Friday, May 25, 2012

Moments Missed

I have a section at the bottom of the "My Hero" page where I am tracking big moments that my mom is not here to be part of.  I know she is watching and it tugs at her heart, like mine, that she can't be with us.  In case it gets overlooked, I wanted to post the list here.  There are countless moments where I think "Mom would love to be here."  No list in the world could hold all those moments.  But here are a few... 

Moments Missed:
  1. May 27, 2009- Birth of grandson via natural childbirth
  2. June 5, 2009- Birth of grandson via VBAC
  3. October 2009- Daughter spoke at Komen 3 Day Walk to 3,000 walkers and thousand more crew
  4. December 2010- Son graduates with double Engineering degrees
  5. May 2011- Daughter graduates with a Masters of Education
  6. May 2012- Daughter chairs the Relay for Life and raises over $60,000 for the American Cancer Society
  7. June 2012- Granddaughter graduates from pre-school

Thursday, May 24, 2012

HysterSisters

What a week! This week in teacher land is a blessing and curse. It's HSA (High School Assessment) week in Maryland and as a teacher I have to proctor exams daily. It’s tedious at best, but it’s a nice break as well. This year however, I have a new challenge. Strep has been circulating my school and low and behold, I come down with it. Wow, talk about the worse sore throat I have ever had! The doctor mentioned that my tonsils are abscessing and if the antibiotic doesn't take care of the swelling, I will need to see an ENT to have them drained. That just sounds lovely!

Speaking of antibiotics, it occurred to me last night the antibiotics might impact my hormone replacement therapy. So, I go off to research the internet. Apparently, it can impact your hormone level, but not always, just like birth control. For me, it's not a huge deal. If it impacts my hormones, I will level off after the meds are over.

I did though come across this amazing website; HysterSisters. I remember when my mom had her hysterectomy, she read the book "Through the Land of Hyster: The Hyster Sisters Guide" by Kathy Kelley. It was hilarious and the most helpful book ever because it is written in part by many women who have experienced different hysterectomies for various reasons and their advice. It’s real and relevant. I recommend it to anyone facing a hysterectomy, or an oophorectomy. It also makes a nice recovery gift for a friend. The website has a forum section for live chat and to post questions not covered in the book, like "Will antibiotics impact my HRT?"

We are off to Chicago this weekend to visit my mom. I am very emotional about it. I just miss her so much.

Monday, May 21, 2012

Relay for Life and Race for the Cure!

Relay for Life is over, but its impression, I hope, will last a long time.  We raised, at this point, close to $55,000!  WHOA!  That's nearly $20,000 over our goal.  It was an amazing event with even more amazing people.  I am so proud to say that I was a part of this committee and I am even more proud to say that we made a huge impact on the journey to finding a cure for cancer!

Don't forget, my first race is June 2nd, on my 1 year anniversary.  I'll be running in the Race for the Cure DC!  Support me!  Please :)  I'll post my results afterwards.  I am SO excited!  Next up, a 10k. I ran my first training 10k about 2 weeks ago and I think I am ready to start training it to get my time down.  Hopefully there is a cancer charity that does a 10k, or even a half. Who knows where this will take me!

Thursday, May 10, 2012

Running My Dog Ears Off!

I have been so busy with Relay for Life coming up in 2 short weeks that I haven't had time to post about my procedure this past Thursday.  I set out to Baltimore with my mother in law since I was told I would need a ride home.  I get there, get changed and prepare for the surgeon to make markings about where they needed to lipo and there they needed to cut.  The surgeon came in, opened my gown and cock his head sideways as if I was an alien. 

I said, "I think my dog ears have gotten better, what are your thoughts?"  He said, "Yea, I don't think I can do anything to make them better at this point.  Were you a cosmetic patient?"  Me:"No, I was a DEIP flap."  Him, "WOW!  You look phenomenal!  I thought you were a cosmetic patient."

We both laughed and I got dressed and went home.  Essentially, I have lost a few more pounds, started running more and more and I guess I no longer have dog ears around my hips where the scars are.  Surgery is official DONE!  Only think left is nipples (tattooing).  But only after we get the laser hair removal deal completed.

That's all for now.  If you are free and looking to give back, check out the Clarksburg Relay for Life May 19th starting at 5pm!  Gates are open to the public until 11pm.  We have vendors, moon bounce, face painting, locks of love, bone marrow registry and MUCH more!  Come out and support a world with more birthdays!

Thursday, May 3, 2012

The Shirt

Since my 5k race is only a month away, and it just so happens to be on my anniversary, I had a shirt made:

Front:
 Back:
I will be rocking the pink tank, along with my teammate Jessica, June 2nd at the DC Race for the Cure!  Support me if you can here, or come out and cheer me on!

Wednesday, May 2, 2012

The Plague

It all started last week with Andrea.  She woke up with a high fever but no other symptoms.  After a week out of school we were optimistic that this "virus" hadn't spread.  Friday night, I came down with a fever and head/chest cold symptoms.  Needless to say, we have all been sick in one way or another for over a week now. 

Jackson is in underwear today!  It was like putting a cat in a bathtub, but I remain hopeful that we can convince him that potty training is a good thing.

I had to cancel my hair removal session since I still haven't heard back from the insurance company about my coverages.  So much for "pre" approval!  Next Tuesday is my touch up for my hips.  Good bye Dog Ears!  I'll try to post pics as I wish I had taken more along this journey for followers to see.  Have a great and healthy week friends! 

Sunday, April 22, 2012

Vintage Confidence

(Reward for reading through the information stuff....pics at the bottom :)

I think most people are very curious about my reconstruction.  It doesn't make sense to them how tummy tissue can be made into breasts.  I have linked some great information on the process here.  I had plenty of excess skin from my huge pregnancies to cover most of my double mastectomy reconstruction. 

After my surgery, the tissue settled and I had valleys on my chest where the new tissue met the breast bone.  To repair these, the plastic surgeon added small implants under the flap to add lift and fill the valleys.

I have extensive scaring.  I have a ring scar around where each nipple was (I was not able to save my nipple).  I have a scar under the breast in the crease between the breast and ribs.  I also have a scar from the outer side of the nipple scar to the arm pit.  The ring scar will be covered by the nipple tattooing.  The others, we hope will lighten.  I see this as a small price to pay for my life.

In addition to the breast surgery, which I have to say, made my breasts look "pre-nursing", I also continued my weight loss after my surgery for a grand total of 40lbs lost.  10lbs. was lost from the removal of tissue in my surgery.  The rest took some work!  I have had body confidence issues for a long as I can remember.  I just never felt comfortable with myself.  However after this process, and after the amazing support and love from Ray, I truly feel like I am finally confident.  Call it figuring out what's really important, or not taking what you have for granted, or whatever else.  I am sure it is a lot of "things".  But I am so thankful that I feel so amazing these days.  I am also truly thankful for a man that loves me unconditionally and never (ever) made me feel anything but beautiful.

Ray's birthday is tomorrow and for his birthday I had some photos taken in retro pin up style.  I made a really sweet book with quotes from our favorite songs.  It was my way of showing him that he makes me feel incredibly special and beautiful.  I also wanted to share some with my "fans".  I want women to see that you will look "normal".  I mean obviously when I am naked I see scares.  But day to day I don't even know they are there because the wonderful job my surgical team did.  I can wear bathing suits, tank tops, tight tops, bras, anything and everything and you wouldn't know the difference.  I am thankful every day!  



Tuesday, April 17, 2012

Rough Couple Days

Ever since my surgery, last June, I have had amazingly bad temporary stomach pains.  They feel like menstrual cramps in terms of the locations and timing, but are much sharper.  I usually end up ill after a few days.  Anyway, I have been having these pains the last few days.  I just seem to get upset stomachs at the drop of a hat now.  I feel like I am constantly saying, "My stomach is really hurting right now."  and I mean it. 

Days like today make me feel depressed in some ways.  I start to evaluate and try to determine how I got to this point.  I know it is a phase!  But, nonetheless, there are times in this journey when we will all feel less strong, less together, and less positive.  Today and the last few are those days for me.

On a side note, I am keeping my aunt, uncle and cousins in constant thoughts and prayers today.  I hope that cancer eludes you, but know that there are oodles of people anxiously waiting to support you if the best case scenario doesn't end up being reality.  HUGS! 

Monday, April 16, 2012

Few and Far Between

As my recovery comes up upon a year, I have less and less to write about.  I am feeling great!  Hormones seem to be fine.  I miss a few here or there, but all in all, I am accepting that this is part of my life now. 

In other news, Andrea and Jackson are most likely going to private school next year.  We were assured that will get enough financial aid to send them both.  Andrea got the nicest acceptance letter for passing her assessment for early kindergarten.  I think I might frame it!

Jackson's follow up from his tonsil and adenoid surgery was perfect.  He apparently heals like his mama.  The doctor was amazed that he looked so awesome after only 2 weeks and hadn't even touched a dose of medicine.  All in all, it was amazingly easy and painless.

So it occurred to be today that on my 1 year anniversary of my prophylactic surgery, I will be running my first 5k race!  I am entered into the Global Susan G. Komen Race for the Cure.  Please support me if you can.  My goals are: 1. Each mile in under 10minutes, total time of 30minutes.  Reach goal: Total time of 28:30 (9.5 minute mile pace).  I have no idea about the course.  I assume since it is in DC that it is relatively flat, but that can vary from section to section of DC!  Hills might alter these goals vastly!

Monday, April 9, 2012

Denied!

Dang!  My first laser removal treatment was DENIED!  I have the paperwork in hand that says it was pre-approved!  So, after speaking with the insurance company today, I am faxing in all the paperwork I have in hopes that they honor their commitment.  I don't want to go for another treatment if its not covered.  I can't afford to cover this at $100/session.

I am getting more hot flashes lately and night sweats.  I am scared to ask about upping the dose of hormones because I am scared the increase will mess with my mood.  I am ready feel some days that I am more touchy than I should be.  At the moment I am blaming that on giving up soda and most carbs.  In reality though, I know that I may never be or feel like I did prior to this journey.  I may never be the same.  Its hard to consciously give up a person involuntarily.  I need to work on and focus on moving forward though.   I need to accept and own that I am different now mostly in positive ways, but in some negative ways as well.

Enough about that.  I am looking forward to my procedure in May.  I am looking forward to my front muffin tops disappearing!  I mean even pants that are falling off look too tight in the hips from the scaring.  So I am happy to finally, hopefully, smooth out the scars.

My nails are still peeling and flaking despite constant nail polish and acrylic gel.  Another change from the hormones.  My hair, thankfully, is not falling out!  That would just be too much for any one person to handle.

This has been a great week off.  I am seeing an orthopedic Thursday for my ankles.  I am just falling apart.  I think I strained every tendon in both my ankles running in gravel last week.  I can't get them to heal.  I need to talk to an ortho anyway about my feet and shins and shoes and this whole running thing.  So it should be good.  I am excited about it.  Jackson has a follow up Wednesday which we anticipate being perfect! 

Tuesday, April 3, 2012

Spring Break!

I am off this whole week for Spring Break!  I am so thankful!  Although, I swear full time mommy, maid, chef and chauffeur is just as difficult.  Anyway, we have some very fun things planned this week. We made muffins and dyed Easter Eggs today after toddler time at the gym.  Tomorrow we are going to plan our veggie seeds and Easter Flowers (Impatients and Pansies) after we get back from a play date with Aunt Jessica and the cousins.  Thursday we have toddler time again and probably some park time.  Friday we are headed to the Catoctin Zoo for the day with Aunt Jessica and Cousins again (We love that we get to spend time with them this week).  Saturday Grandad is coming over for lunch and Lyndsey and Andrea start Cheernastics in the morning.  We are all eating a feast lunch here, then heading back to the gym for an Easter Egg hunt.  Not sure about Sunday.  Monday is our last day off before we head back to school and work. 

I think I sold my motorcycle today.  It's bittersweet in that I didn't even have a chance to ride it.  But I am just more and more anxious about it and I am so scared I am going to get hurt.  We also need a fence in the worst way and $3000 doesn't grow on trees, but the bike is worth just about that much.... We are also selling our old big screen TV.  Hopefully that will pay for the title taxes I had to pay on the bike just to sell it and add to the summer savings account. 

Things coming up: Ray's birthday April 23rd (34!) Another hair removal treatment the first week in May.  Another small procedure to fix my hips May 8th.  Jackson is doing fantastic!  Thank you for all the concern and well wishes.  He loves all the attention.

Friday, March 30, 2012

BREAKING NEWS: New Breast Cancer Mutation Discovered!

Read the full article here

Excerpt:
"Currently, people with a history of breast cancer in their family can only be screened for two of the disease's known genetic mutations, Prof Southey said.  The two genes account for about 20 percent of breast cancer cases, she said, with the remaining 80 per cent not linked to any known mutations, she said.

"At the moment, if a woman with a strong family history of breast cancer goes to clinical genetic services and undergoes testing for the genes that we know today, the most likely outcome is that she will not be found to have a mutation in any of those genes," Prof Southey said.

Prof Southey said the study, published today in the American Journal of Human Genetics, was continuing, with much more data to analyze.

"We really are very optimistic that we will find additional genes like this.""

My Little Smarty Pants

It all started in November at Andrea's parent/teacher conference.....
Andrea's teachers commented that Andrea was doing so well, catching on so fast and they really felt she was advanced.  Fast forward to 2012, we find out that Andrea misses the deadline to be considered for early kindergarten entrance by 3 weeks!  So we start looking at the private school route.  Low and behold, most traditional schools have a cut off too!  So we start looking at Montessori schools.  While these are great schools, there are so few and the ones that are free and public are lottery admission.  Andrea and Jackson were not chosen.  So we went to the one private school today that would consider Andrea despite her birthday.  She did GREAT!  The kindergarten teacher said she couldn't see Andrea doing pre-K again, she was completely ready and they wanted her!  The hours will work if I can get 1st period off, but the tuition is INSANE.  So we are just so hoping our application for financial aid is accepted.  We want this so badly for Andrea and Jackson.  Although we love the place they are at now, Andrea just needs more. 

Funny story: I told Andrea we were going to look at a new school and if she liked it she might go there in the fall.  She said great!  BUT, she would have to "check out the playground" before making any decisions.  LOL!  She is just amazing!  We are just tickled and so proud of her!

Thursday, March 29, 2012

Jackson Is Out Of Surgery

He did great! Recovery was a little rough there for a while. It took four nurses and ray and I to restrain him from falling off the bed, pulling out the IV or otherwise hurting him self. He is one strong little man. He is home now, eating and drinking and doing well. The doctor said he was 80-90% obstructed in his throat by his tonsils and his adenoids. He was barely able to breath on his own awake and not sick, thus the issues with sleeping. Anyway, we are so thankful this might help his sleeping troubles. He dumped out a Costco jar of sprinkles this morning so our spice drawer and by extension cooking are also happy that he wont he invading in the middle of the night.

Friday, March 23, 2012

Still Here

I haven't written in a week partly due to a massive schedule and partly because there just isn't much to say.  I do have some celebrations to mention though:

1. I ran 4 miles at a 10:20 mile pace yesterday afternoon!  (This is my second time going 4 miles, but this time was MUCH faster).  I'm on my way!  Don't forget that Race for the Cure 5K in June, I am fundraising!

2. I was accepted into a PhD program at Liberty University for Instructional Leadership.  If I decide to matriculate, I will start this summer with what they term "intensives".  These are week long full day courses taken on campus.  I would have to live in VA for those weeks.  I am not set on taking this degree on, but its up for consideration.

I am sad that these are the accomplishments my mom would have loved to hear about.  I know if she was still here, the PhD program would be a definite, not just a consideration.  She would be tickled!She would be proud of me and I miss being able to share what I am doing with her, share my decisions and my struggles.  I miss my best friend.   

Friday, March 16, 2012

Hair Removal Session 1

I went after work yesterday for my first hair removal session.  I was SO nervous.  I heard that laser hair removal was painful.  Despite not having feeling in the area I was treating, I was still scared. 

I got to the spa and had to go through a plethora of paperwork and lecture.  I was told that it feels like a rubber band snapping you and it was expected that it would take 15-20 minutes per session.  Great!  I get to feel bee stings and pinches for 15-20 minutes.  In addition, the laser can cause burning and blistering to the treated area.  Why do people choose this again?  Oh, and it could take 8-12 sessions.  I only have 5 covered at $100/session.  the 7th is free.  So let's hope I only need 8!

Thankfully, I didn't feel a thing.  Apparently they put extremely cold cream on you then laser.  I didn't feel cream, rubber band snaps and I don't feel the burn.  I feel nothing.  I was a nervous wreck the whole time waiting for her to get to a spot I might mysteriously have feeling.  But it never happened.  Awesome!  I can handle this!

Other than that, life is good.  Hormones are good.  Someone even told me that I look so much better and my attitude is much more positive.  I am glad I think I finally found something that will work for me long term.

New obsession: Food purity (this is a whole other blog....)

Sunday, March 11, 2012

Feeling Thankful

I am feeling very thankful today for amazing friends, awesome family and my health.  I ran today for the first time on the road; the weather was too beautiful not to.  I took Smoke with me.  I am going to try to really train him and stick with it.  He is a great dog and I want to make him better.  Anyway, we had a great run.  It was so nice to be alone, listen to great music and just think about everything.  I have only been running for a few weeks but I am already doing a 5k and I am moving to a 4 mile run this coming week.  I am so blessed and thankful that I am here, that I am healthy, and that I am able.  I can't say thank you to everyone that has touched my life, put a smile on my face or supported me in a time of need.  But to anyone who has ever crossed my path, for good or bad; thank you.  You shaped the fantastic life I am living today and I am grateful.

Thursday, March 8, 2012

Running for My Life

I can't say that I love running, but I do like the time frame required.  I burned 400 calories in 37 minutes last night.  Love it!  That would have taken my an hour or more on the elliptical.  So, last night, I ran my first true 5K.  3.1 miles, 32 minutes 12 second and I didn't stop or walk once.  Not bad for about 2 weeks worth of training after 10 years of not running one step.  My first official 5K is April 14th.  Thanks Jessica!  This run is to benefit Autism research and awareness!  My goal: under 30minutes!

Hormone update- well, let's just say the driveway is a dangerous place to walk these days!  I need to make sure I eat a full meal, so I am setting an alarm to ring at 7:30, after I get to work where I will have time to eat a full meal before taking my meds.  I have to make this work!

Not much of an update, I know.  But things are good right now with my health and we are just plugging along waiting for the next phase.  Speaking of which, first laser treatment is next week.  I hear its painful, but since I have no feeling in my breasts, hopefully that will be a non-issue.  I seriously and praying hard for this one!

Monday, March 5, 2012

Tough as Nails

I hear this a lot, about what I have been through and the decisions I have had to make.  I only wish this was actually literally true.  My fingernails are thin as paper, splitting, flaking and breaking.  I almost have no nails left!

I blame it on the menopause and hormone changes.  I am currently clipping them as short as I possible can, coating them with gel acrylic and keeping them painted.  I am also using non acetone remover with vitamins and taking a multi-vitamin.  Lord, if my nail splits below the quick that may be the worst pain I have experienced in this entire process.

Tough as nails....Bwhahahaha!

Sunday, March 4, 2012

Rash Decisions

I have been running now for a couple months and I have just about made it to a 5k.  Not fast by any means, but I can do it.  Anyway, Jessica and I had been talking about entering into runs as a means to work for something in the gym.  I thought today, if I am going to run, why not run for something?  So I registered for the Susan G. Komen Race for the Cure in June.  I am VERY excited! 
I also registered Jessica.  She doesn't know it yet though.....

Check out our team page and support us!  How about $1/minute?  I am guessing I can do this in 30minutes or less! Go team "Running for my life!"

And my personal page...

Thursday, March 1, 2012

Previvors have a Day, and a Week!

This article, National Hereditary Breast & Ovarian Cancer Week and National Previvor Day 2010, reads that the last week in September is recognized as National Hereditary Breast and Ovarian Cancer (HBOC) Week, and the last Wednesday in September is National Previvor Day.  Awesome! 

I think it is not ironic that the "previvors" are recognized before October's National Breast Cancer Awareness Month.  That only makes sense, like the pun is intended. 






 

Wednesday, February 29, 2012

Hormone Update

Well, it has been almost a week since I started my new hormones.  So far they are the best yet.  I have not been sick again although I have to make certain that I eat before I take them.  If I don't or if I don't eat enough, I feel very sick.  My moods have stabilized more and some people have said I look better.  I am so hoping this lasts!

I have my next "phase" May 8th to redo my hips.  They are still "dog earred" due to scar tissue.  This will be completely minor, local, in office, out patient kind of thing.  I start my laser hair removal March 15th.  I will go every 6 weeks for 5 sessions.  After that I will set up a time to get tattoos.  I will need to do follow-ups with the breast surgeon or his phycisians assistant every 6 months until forever.  I am considering moving closer to Baltimore since I am there every week practically. 

The Relay for Life is going so well, I couldn't be happier.  I am so passionate about this cause and this event.  I am thrilled that I get to be part of it.  We are on track to blow our monetary fundraising goal out of the water this year and I am so proud of that!  If you are curious, check out the links in the Relay for Life Tab!

Friday, February 24, 2012

Hormones are Changed!

I picked up my new hormones last night!  It must be fate.  They were called in Tuesday by my midwife and she said the pharmacy would probably need to order them and it would take a few days.  I called yesterday to make sure the pharmacy received the order and when the hormones would be in.  I figured I'd have to go a few days without, since I was on my last patch, and risk impending consequences from hormone dips.  But when I called they said they received the perscription just as their order went out so they had received the hormones and filled the script.  It was ready for pick up.  Woot!  No missed days!

I started them this morning.  About 20 minutes after popping the pill I was over to toilet vomiting.  So, not a great start, but I am still optimistic. 

On side notes: Jackson saw the ENT specialist and we have scheduled his tonsillectomy and adenoid removal for March 29th.  Andrea is going to be moved to the pre-K class for a week on a trial basis and pending a good outcome she will stay there and be recommended for kindergarten in the fall despite being only four.  We are just hoping for the best outcome for her.

Monday, February 20, 2012

Classic Song for My Life....(new post below)

6 Month Follow-Ups

So, they are almost 2 months late, but who is counting! My breast surgeon is booking into March currently....of 2013!

Anyway, everything is perfect physically. My breasts are perfect, look and feel good. However, the doctors all agreed that the hormones are not working. I got a prescription for a new pill called PremPro. I will have to take it daily, but I am hoping to couple it with a vitamin and take them each morning as part of my routine. I NEED to make the taking of the pill work. He said that there aren't many options for convenience and that I need to prioritize personality and my health before convenience. I don't like it, but he is absolutely right.

He said it is completely normal to try various kinds of hormones and levels to find the right fit. No two patients are alike. He did say however that if this doesn't work, being my 4th try; he would recommend someone that specializes in hormones to follow up with. He is concerned that at my age there are a lot of factors to consider and my age might very well be playing a part in why this has been so challenging.

The doctor also commented that Ray must be really frustrated with me and my mood swings and in ability most of the time to be intimate. I almost without thinking said, "He's fine." But once I gave it some thought, I realize that I haven't considered his feelings much and I need to. It’s important that this doesn't rule my life. I am still a wife and mother FIRST. Then I am a patient. I can't forget that and I need to make sure that with all things considered, I am putting my marriage and my parenting first. I am so lucky to have an amazing support network here at home. I know Ray will probably never read this, but for all of you that do, he is an amazing man. I couldn't have asked for a better partner. He truly is a partner in the various aspects of our lives and I need to recognize that he has suffered also in this journey.  Just because he is so great day to day doesn't mean he is okay.  I think the doctor is right.  Ray probably is very frustrated.  Reagrdless, I know that he will always stand beside me. I am so secure in his love that I never question his willingness to be in this with me through the ups and downs.  And I so truly appreciate and thank God for him daily.

Wednesday, February 15, 2012

Previvor. Are you Offended?

There is some debate as to whether the term “Previvor” is offensive.  I guess the argument is that it may take away from the significance of a cancer survivor.  If you know me, you know well that I am not easily offended.  I personally, obviously, do not take offense to this term.  I don't really understand why anyone would find it offensive unless there was some sort of competitive motive behind wanting to be in a VIP group.  At which I would wonder why you would want to be in any group related to cancer, VIP or not. 

Again, I find it odd that people want to exclude others of varying perspectives and experiences with cancer.  Are we going to start judging and ranking people with different stages of cancer, or seriousness of their cancer to define a level of survivor?  Then why the desire to exclude those of us with hereditary genetic predispositions?  Are we not a group in need of awareness?  Are we not worthy of some attention so that others can understand and make informed decisions regarding their cancer risks and options? 

What about the term co-survivor for caregivers?  People should be commended for their dedication to a cancer survivor and I challenge anyone to find a survivor that does attribute their success to the support and love of those around them.  Caregivers are very much co-survivors.  Cancer impacts a village, not an individual.  Family and friend’s lives are turned around with a cancer diagnosis and minimizing that is not beneficial to anyone including the survivor.

I find it offensive that anyone would find “Previvor” and/or “Co-Survivor” offensive.  I am not seeking attention, I am not seeking pity.  I merely want to provide a place of knowledge and advocacy for greater information, resources and rights as well as provide a therapeutic place for me to lay out my feelings, emotions and experiences. 

Today I am feeling particularly emotional hence a more emotionally charged post.  There are a number of reasons, but to list a few, I am not happy about my hormones and I know I need to go back and see what other options are out there for me.  I am tired, extremely tired, as we lost power last night and needed to crash at Jessica's house for the night.  And I miss my mom.  I miss her every day, but on day's like Valentine's Day, a day where she would always go out of her way to get Ray and I a thoughtful gift.  We got Andrea and Jackson some gifts to carry on the traditions she started.  But it's a bittersweet day nonetheless.  Thank you Aunt Deedee for the kid's gifts as well.  They were very excited to get mail :)

Saturday, February 11, 2012

Oh Jackson!

Jackson has never slept well, since birth. He never slept through the night and rarely does now. We always though it was because of his weight issues and milk issues in later infancy. We wouldn't deny him a bottle at night because he needed to gain weight. We thought that we set him up with bad habits, what choice did we have?


However, at his 2 year checkup, Jackson's doctor noticed that his tonsils were very large. They call this "kissing tonsils". The doctor asked me if he snored and I didn't know. At the time Jackson never slept with us and we didn't use a baby monitor. As he got older and we started paying attention, we realized the he does snore. A LOT! I told the doctor this at his next visit to which the doctor asked me to take some video of Jackson sleeping for him to analyze. I did that and e-mailed it to him last week.


He got back to me yesterday that it seems, from the video, that he feels Jackson has significant sleep apnea. This is not too serious, but we need to treat it because it can impact his rest, behavior and if he were to have surgery, anesthesia is more difficult and dangerous on people with sleep apnea. We are going to see an ENT specialist as soon as possible. The pediatrician is recommending removal of his tonsils and adenoids. I am hoping for something less invasive.


Anyway, we have been dealing with this for the last few days between taping, emailing and calling for appointments. Thus, I haven't posted. I still need to call Mercy and start my laser hair removal. I am SO excited for that. I go back to the breast surgeon Feb. 20th. I will be at Mercy all day that day! Joy. Look for updates between now and then and of course afterwards.


Shameless Plug: Check out my Relay for Life Page! (Go to the tab at the top and follow the links)

Wednesday, February 8, 2012

BRCA Resource Updates!

I added them to the bottom of the BCRA Previvor page.  I also uploaded an update of the film I linked.  I have not seen this film, rather, I have read Joanna Rudnick's article in the Chicago Tribune Magazine.  I hope to watch this documentary in the near future.  However, her story is that of life changing decisions and it's powerful.  Enjoy!

Spread the Word

I am amazed at how many people I have encountered the last few weeks that want to know every piece of BRCA information because they are in the midst of considering testing, testing, being positive or considering surgery.  I am so honored and moved that I can share this experience with as many people as possible.  If you have questions, information requests or general feedback, I'd love to hear it.  I am going to make a new section with books, articles and videos about BRCA.  Look for it by the end of the week!


A great place to start is the FORCE website complete with member forums. 

Tuesday, February 7, 2012

A Last and a First

I remembered that I didn't blog about doing my last will and testament before my surgery.  I highly recommend doing a living will, durable power of attorney, guardianship and will before any major surgery.  We don't like to think about it, but if the "what if" happens, your family and loved ones will be grateful that you set up your wishes in a easily accessible way.  I gave copies of my documents to my surgeons, and my husband had copies in the waiting room. 

On a more positive note, I ran for the first time last night!  I waited 6 weeks post op to try more rigorous exercises.  I feel that you will know when you are ready and the guidelines the surgeon gives you are "suggestions".  Now, "I" wouldn't workout before they recommend, but I also didn't feel like a failure by waiting longer. Slow and steady, but I had no pain.  I am excited to start working out again.  I plan to join the community center by my house and get back into the swing with my workout buddy! 

Sunday, February 5, 2012

Re-learning How to Sleep

I have been a tummy sleeper for as long as I can remember.  I LOVE it!  I know it is bad for your back and is a sign of insecurity, but I love it and a rested me is a better me.  However after each surgery, ever in my life, I am unable to sleep on my tummy for an extended period of time.  As if romping kittens and two toddlers doesn't mess up your rest enough, now I am tossing and turning trying to get comfortable.  I am "cleared" to stomach sleep, but it feels like I am sleeping with two rocks under my chest.  And I have an incredible fear of messing something up or worse, popping an implant.  So for now, I am trying to be a side sleeper.  It's not going well.

Saturday, February 4, 2012

I Think I Have to Go There- Abortion

I think a lot of thoughts that factor into my positions on a lot of issues.  For example, I think a person's political and personal belief can be different.  I think words have power and can mislead or misconstrue more easily that people give credit.  I also believe that regardless of your political affiliation, this country will not continue to thrive if we can't see the trees through the forest so to speak.  You must be able to see right from wrong even if it disappoints you that "wrong" might be coming from your "side". 

I am conflicted over this Susan G. Komen (SGK) controversy.  I know what I have experienced and I feel that people attacking SGK is rather ironic.  If they are succumbing to political pressure as everyone is shouting, then why not attack the pressure?  Because you expect that behavior from conservative pro life groups?  So do you then ignore the bully and blame the victim because you expect such behavior from the bully?  Seems pretty silly when you put it in another context.

Further, it makes sense, like it or not, that organizations not grant funds to other organizations under FEDERAL investigation.  I do however feel SGK was correct in re-evaluating their stance and specifying that they will only disqualify those who are convicted of CRIMINAL investigations.  I was proud that they had the gull and ethics to see they were being unfair and fix the issue. 

In talking with people about this issue, I have had more than one person mention that abortion increases a women's risk of breast cancer later in life and thus it seems counter productive for SGK to fund Planned Parenthood (PP) to begin with since  PP performs abortions in some clinics.  Well, let's set the record straight.  Abortion does NOT increase a woman's risk of breast cancer.  Period. (source)

The only way this could even remotely be construed is by saying that if you abort a fetus, child, tissue, whatever you deem it to be, then you obviously aren't breastfeeding it.  Breastfeeding decreases a woman's risk of breast cancer later in life.  BUT, this is a huge but, NOT breastfeeding doesn't increase a woman's risk.  It doesn't work that way.  Something decreasing a risk doesn't mean that if you don't do that you will have a higher risk than you would otherwise.  The word increase indicates that you have raised your probability beyond a baseline.  Whereas decrease means you have lowered your probability below your baseline.  They are not mutually exclusive.  So while having an abortion takes away a woman's ability to decrease her risk of breast cancer by breastfeeding, in no way does it increase her risk.  Further, it is incredibly insensitive to allude that woman who suffer miscarriage or still birth are in anyway more at risk.  In fact, they are not. 

Women are women's worst enemies; as history has repeatedly proven true.  Sad, truly.

Friday, February 3, 2012

50/50

I watched the movie 50/50 tonight with Ray and my dad.  It was funny, heartbreaking and offensive all in a compact 90 minute low budget film.  I liked it because I felt that it focused on the patient's perspective of everyone around them.  It highlighted annoyances like people constantly saying "It's going to be okay."  Or saying "I am sure you are feeling shocked and numb." in response to a patient saying, "I feel fine."  If anything, I hope people watch this movie and learn to better validate their patient's feelings instead of projecting their own.

I don't want this to come off "judgy".  I made mistakes as a caregiver.  I had moments of insensitivity.  I remember feeling frustrated at my mom's lack of energy level, or her reluctance to go to my last sonogram.  I know she was feeling bad and tired, but I wanted her to be there.  I tried to hide my disappointment, but she knew and I regret my feelings to this day.

The movie is very heavy in language.  Even the "C" word that I detest.  But for what it accomplishes in terms of advocacy, I rather enjoyed it. 

The one line I distinctly remember, "The more syllables in the cancer, the more serious it is."  Breast has 1 syllable.  Ovarian has 4.... I am in no way down playing breast cancer.  I just found that ironic. 

Relay for Life

Check out my Relay for Life tab and view the new slide show on what Relay is, what you will find there and how to register!   I am honored to chair the event this year and I am so excited to see our numbers grow DAILY!  Yes, daily we are registering more teams and participants. 

Here is my personal fundraising page if you feel incline to give.  I would really be grateful for anything spared. 

My next follow up is February 20th.  I will see all three surgeons!  It'll be a long day.  I will update afterwards for sure, but keep checking for updates between now and then :-)

Wednesday, February 1, 2012

Thankful, Excited, Great News! (insurance coverage)

I know many, even most, people have issues with their insurance companies.  I am just so thankful that to date our health insurance has been very accommodating and helpful.  They covered Jackson's prescription formula which made our $700/mo. tab only $350.  That is huge!  Anyway, I just found out today that they will cover 5 sessions of laser hair removal for me! 

Allow me to explain.  When I had my DEIP flap reconstruction, abdominal skin was used to fill the space where my nipples were.  My stomach skin (as any Greek woman can tell you) is liken to my arm, its HAIRY!  All was well and good for a while after surgery, but it became clear relatively soon that even with tattooing, there would always be this hair on what was to become my nipples, and it was very visible. 

I asked my surgeon and the Mercy Hospital MediSpa to apply to my insurance for laser hair removal.  They were a bit reluctant as I guess previously it was denied.  Well, I found out today that I qualify for 5 sessions, which is the amount recommended to adequately remove the hair permanently.  That is about $500 of coverage!  I am thrilled and feel very thankful to have such great insurance.  I fully understand how lucky I am and I am very grateful.

Hello Rock, Meet Hard Place

Susan G. Komen Foundation has Announced an End to Planned Parenthood Fundraising

In my experience walking in the 3 Day Walk for three consecutive years and fundraising over $10,000 for Komen, I personally met people that were unwilling to give to the 3 Day because Susan G. Komen granted money to Planned Parenthood.  People have various beliefs about Planned Parenthood, specifically around the issue of abortion.  These particular people felt that they were not willing to donate money that could then be granted to Planned Parenthood which could then be used to fund an abortion which in turn compromised their morals and/or religion. 

The issue of greater good, or what we history teachers call "common good" comes into play here.  Was Susan G. Komen losing fundraising dollars to the extent that dropping Planned Parenthood benefits their income thus research and awareness?  I don't know the answer to this question, I am merely posting a perspective.  Is the greater good worth the sacrifice of women and men that use Planned Parenthood?  Its not nice to exclude anyone, but in reality, this may be a necessity to continue for the majority. 

While I am VERY pro-choice, and I don't like the loaded words in the first part of this quote (found in the above linked article), I do see the last part as relevant to the discussion:

Bradley Mattes, executive director of the Life Issues Institute wrote: "The continued, collective efforts of the pro-life movement have paid off. Our work to educate Komen donors to the reality that the organization has financially supported the nation's largest chain of abortion mills has caused Komen to halt the financial hemorrhaging. Evidently, Komen had to choose between political ideology and financial viability. They made a good choice."

I don't like it.  But I can't say at this point that I don't support their decision.  What are your thoughts?