The Rock Star.

Last night the minute she came out of the recovery room she had already forged relationships with strangers. This has always been one of mom's things. She can make anyone feel like she has known them forever. I HATE going to the grocery store with her she would tell stories to everyone and recommend stuff to people etc. Sometimes its so embaressing other times it hilarious. Last night however, it was a comfort. Suddenly when I heard her telling the young man who was moving her from one floor to the next to get back in school now while he had tuition reimbursement, time, etc. Hearing her talking was a sign to me that she was alright, she was gonna be the same mom as before.

Once again this little women who has sacrificed so much for my sister and I had survived. Not only had she once again beaten the odds by research and knowledge she had somehow moved beyond feeling sorry for herself and on to celebrating her gifts and was gonna start fixing everything she could around her! Even while laying on a hospital bed eating a graham cracker and hiding her Diet Pepsi under her blanket.

Today the nurses started calling her a "Rock Star" She is having little to no pain, no side effects, and is walking, eating, reading, and filled with an energy of peace. All those years of needle Biopsys and drugs and more are over! My mom NEVER has to have a mammogram again! Now I must say that in itself is a motivator. :-)

I am learning many things through this journey but one thing is clear. Their is a powerful place in our walk with the Lord when we are able to reach Peace. Mom's Peace has come. After almost 20 years in a high risk group and being tested. She now has the peace that she no longer has to fight against Breast Cancer. She may find a new fight but this one is now gone and behind her. Her journey has a new road and at the beginning there is Peace for her. For this I and my entire Family are thankful.

"Let us be motivated by what's in our day today to change the days ahead."

Mama Huff

Our Amazing mother.

My mom is so brave and so amazing....the Nurse on her wing was calling her a Rock Star! I am so very humbled by her gifts yet even again today. One of her procedures today was done for the very first time with an actual tattoo die instead of radioactive....it was a trial and had never been done on a person it was successful and a major breakthrough for the Breast Cancer study! 16 years in the Breast Cancer study program and our Mom the lab rat is still giving of her body to save all of ours!!!!! Thats my mom always looking to help someone with any resource she is given. I love her so much.

This is a copy of a letter Joce wrote to mom the night before her surgery. It was so touching to me as my sister is so wise and she has so much strength I thought it would make for a great memory in our blog for mom.

I am sitting here thinking about you and what you are about to do tomorrow and many things are going through my mind. You are the best mom and I love you so much! I am so proud of you and the decision that you have made to finally beat this disease before it got the best of you. It's a hard decision to make, especially when you are doing it to be proactive and not reactive. I should know! People still can't believe that I CHOSE to have a full hysterocomy at such a young age, but it was my choice and a choice that I am happy I made. I know it was the best thing for me. I have times where I am sad about it, but those thoughts are so few and far between that it doesn't really matter. You are an example for all women of strength, compassion and courage in everything you do. You know how much it's killing me to not be able to be there in the morning, but I know that school is where YOU want me to be. I just wanted you to know, as you go into surgery tomorrow, how much I love you and appreciate everything you have done for me. I could not even begin to tell or show you how much! Be strong and be excited for your perky new boobs you get tomorrow

BTW Mom looks amazing already and her spirits are great! God is Good! All the time! All the time! God is Good.

Mama Huff

From Mom's facebook today.

Well...tomorrow is the big day. For those of you who do not know, I had a small breast cancer in 1993. For the past 16 years I have been with the High Risk Breast Cancer Center at KU Med under the care of Dr. Carol Fabian. During those years I have been on clinical trials; had so many aspirations (cell extractions) that I have lost count; and had 5 surgical biopsies. I have been tested for the BRACA gene mutation and you guessed it....I have that also. So after my last tests, Dr. Fabian and I discussed it and I felt that now is the right time to move forward and have double propholactic mastectomies with immediate reconstruction. Dr. Carol Connor is my surgeon and she has done all but one of my surgical biopsies. These ladies are amazing. I am doing this to be proactive...because I want to see all of my Grandkids go to college and get married. Right now I have 1 down and 4 to go....haha. So tomorrow say a prayer for me if you will that I have a good surgery with no "surprises" and a speedy recovery. I know the Lord is with me and will see me through. Love to you all!

Please remember Mom tomorrow!

Mama Huff

The Final Countdown.

We are just under 48 hours till moms surgery. So many things still to do and time is clicking by so fast. The last few days Mom and I have had numerous chances to talk about feelings or concerns that she is having. I have been so surprised by the fact that she is actually doing quite well. Their are some personal things I know she would like to have "cleaned up" I guess you could say......something in us always drives us to a sort of nesting when we know things are about to change or start over. It feels just like when a new baby is about to be born and you just have to get things done.

Moms nesting has come through the redecorating her hearth room to make it more comfortable for her recovery as well as cleaning her kitchen and closets like a mad women, today we even tackled a horrible Miss Annie's room at my house! I know I am the same way, I am always more motivated before I travel or have company or even at the beginning of a new season to tackle the "dirt" in my house and closets.

Maybe this nesting is a way of cleaning things so that the new places she is going with her body and health can have their own surroundings and memories. This is the who she is from now on and so cleaning out the older things kind of fits the cleaning out of the old bad cells so that she can start a new tomorrow with a healthy body.

It's been a interesting few weeks as we have gotten to this point and I know the next few weeks are just the beginning of the journey. Please continue to pray for Mom and her recovery, and her self confidence. Please pray for Joce as she nears finals for nursing school and mom her right hand helper has to step away from helping as much while she recovers. Please pray for me that I can balance all that I need to do for Mom, Joce, and my own family. I am thankful for knowing that these prayers will be made and that Holy Spirit will be walking with us each and every day. I will be posting throughout the day wednesday to update you on moms surgery and progress.

Mama Huff

Gratitude.

I have been working on christmas presents all evening. I am working on gifts of gratitude this year. I am making different kinds of things for everyone. I am so excited about this project and how everyone will respond to the gift they receive as everyones gift is totally different and reflects my gratitude to them for how I love them. My gift for my niece and nephew are books I am making by and writing. The name is "The Story of You". I so enjoy scrap-booking and working with photos so this is an easy project for me. I love using my creative side and I enjoy going through old pictures laughing and remembering until the the perfect photo brings back a perfect old memory.

In just a few days our Mom will be going through something that most of us have no understanding of. Hard as we try unless we are on the other side of the story we will only be able to read about it but never understand it. Her body will be different to her and she will find a new beauty in her new self. However, their will be times when a photo in her hand or memory in her mind will make her think of the past body.

As much as Joce and I are trying to understand this we just cannot. One cannot never walk a road for someone we can only ride along as a guest. However, we can also carry some of the burden and help to make her new memories wonderful. Encouraging her, and helping her to love her new self as well as helping her to laugh when things don't go perfect or funny things happen around her. This is the wonderful part of our threesome that reminds me we will make it through this. We will hold hands, cry, laugh, and probably yell!! (At someone)!! LOL

Mom, you are what "Gratitude" means to us. We are grateful for you and we pray that you will feel the overwhelming gift of gratitude from all those around you who love you too.

"Great is Thy Faithfulness Morning by Morning.........."

I love you Joce & Mom,

Mama Huff (Sissy)

Request.

Joce shared with me today some people had asked if I would post some of Mom's history in what has led her to this point. This is a copy of an email she sent recently that has her story defined quite well.

"The doctors I am working with are some of the best in the country and I trust them completely. My cytology readings and Masood scores have shown Hyperplasia with Atypia for the last 10 years. The numbers continue to increase and nothing has had an any real effect on them. With my BRCA gene mutation and family history, I have reached a point where my risk doubles every year....for example if my risk is 15% this year... next year it will be 30% and so on.

That is based on additional cytology test results....EGFR (Epidermal Growth Factor Receptor) is 2+; p53 (a tumor suppressor gene) is 2+; HER2/neu is 2+; Estrogen Receptor is 1+.

I am scared about the lymph node removal, but by using radioactive dye, they will be able to tell which ones are fed directly from the breasts and will only remove them. If they would find any cancerous cells in the breast tissue and we had not done the radioactive dye, then they would have to take out all of the nodes and I do not want that if it can be helped."

There is also a website I found that list out the reasons surgeons would suggested such a radical approach as an option to a patient. On the list of reasons our Mom meets almost all of them and typically a Doctor only need one of these to make the case for this approach.

Preventive Mastectomy: Questions and Answers
http://www.cancer.gov/cancertopics/factsheet/Therapy/preventive-mastectomy

Joce thought the Medical back round would be helpful to all of us as knowledge is really our only weapon in the battles against cancer. I know being on this journey with our mom these past 15 years has helped us both to become very active about our own breast health so we encourage you..... read up, check yourself often, and see your Doctor.

-Mama Huff

A good day.

Several of you have sent me notes already and I have been able to forward those to mom. This has already in the last 24 hours helped her spirits turn. Today we loaded up the big kids and the little kids and her, Jeff, and I went to the pumpkin patch. A tradition we started 10 years ago on each first fall friday the kids are out of school. The last two years mom has been able to go with us and it is so much fun watching her interact with all the kids. The little kids run to the first few they see and can't decide and then the older kids make a plan an hunt the fields FOREVER until they find the one they have set upon as their final goal. I found it interesting today to just stand and watch and take pictures of everyone. As I looked back on them today I thought of the thousands of pumpkins sitting in the field. Once in a while you would run to one as it appears to be the perfect pumpkin for carving. But then as you look a little closer you might find a spot or some dirt. Some of them you can cut around the soft spots or dirty scratches and carve a completely new face or fun design. Then you put the light inside and no one even knows their was a spot on the pumpkin at all.

In the next few weeks when you help your family decorate or carve pumpkins would you remember to pray for moms surgical team. She has three doctors who will be caring for her all of them will work to create a different physical Carol. I am confident however that our love, your love and prayers, and God's powerful presence with her will keep the light within her shining bright.

Next fall when her light is shining on and she is on to helping the kids pick pumpkins again no one will know their was ever spot there last year.

Lord, let Your light
Light of Your face
Shine on us
That we may be saved
That we may have life
To find our way in the darkest night
Let your light shine on us
Lord, let Your grace
Grace from Your hand
Fall on us
That we may be saved
That we may have life
To find our way in the darkest night
Let Your grace fall on us
Lord, let Your love
Love with no end
Come over us
That we may be saved
That we may have life
To find our way in the darkest night
Let Your love come over us
Let Your light shine on us

-Mama Huff

Hanging on by a thread.

Sitting at lunch today with mom  and listening to her talk about plans and things that we still need to do before the surgery. I can see her starting to get more nervous each day and wondering what things will feel like or how things will go or how long they will take to heal etc. Most of this will be answered on Monday at her pre-op appointment. I know its all normal but it doesn't make it easier for me to sit and not be able to help her along or give her the answers she needs. I have been doing so much research and there is some great research out their about how positive the results this surgery will be for mom and someone with her diagnoses but not any books yet. One study however shows that the doctors believe their is a 100%  possibility of no breast cancer growing after this is over with. The range runs as low as 90% but thats a-lot better then her odds if she doesn't do the surgery. Its hard to know what choices to make when it comes to our health sometimes isn't it? I think we all know however that we have to be the one who is comfortable with the outcome. Not our family, husbands, or friends. It has to be us, our own person. God has to be her strength and thats never a bad thing my prayer today is for Peace....that God will grant mom and all of us a peace that passes all understanding. 

They come out of the woodwork.

Working on a schedule for moms aftercare and I have become somewhat frustrated with certain people. It's interesting how judge-mental people get over this type of surgery. I also think somewhere in peoples mind if they stay away from it then they will avoid having to deal with the fact that they may have to deal with the same decisions someday. You find out who you can count on when you have to ask for people to sleep and bathe you! I am trying so hard to be moms champion right now and keep it all together. I have spent 15 years planning events some that had thousands of attendees. No amount of planning prepares you for this sort of event in your life. My Grandma Nina loved the song "Rejoice in the Lord always again I say rejoice...." thats my plan is to continue to rejoice even though hard days lay ahead for all of us. Pray for mom each day that it gets closer the harder things become. (two weeks from today)

19 days

Last night we hosted a "Bye Bye Boobie" party for mom and her friends. It was so much fun to be with her and celebrate her as she is today. I am so thankful for the friends I have that accept me as I am today. Each of us will change and the love I saw from my moms people last night just reaffirmed to me that my circle of close friends are giving me that same ring of love as I change with time. I love my mother so much and I am so PROUD of her choice to fight the Breast Cancer battle before it takes anymore time from her life. My sister and I have many steps before us in this "dance" life brings. I pray that God will guide our steps and provide the music for us to dance too as He has done for mom each of her days thus far. "....the Lord is my keeper the Lord is the shade on my right hand........" thank you Lord for protecting us today. 

Countdown to Surgery 19 days.

Mama Huff