Two Week Medical Update

It's hard to believe that my surgery was exactly two weeks ago today. It feels like it was just a few days ago. Between the medication and exhaustion, the days seem to run together. 

So where do we stand?

I have completed a double mastectomy with partial reconstruction. I call the reconstruction "partial" because it's a long process. They placed tissue expanders (TE) during the surgery. These TEs act as place holders for my future breast implants and work to expand my breast muscle and tissue in the process. They hurt. They are inflexible, heavy and feel rigid inside my chest wall. And, as I understand, each time I go in for an "expansion" (where they fill the expanders with more saline in order to further expand the muscle and skin), it's like getting braces tightened (yes, as in 12 year old awkward braces.) The more they tighten the braces to straighten your teeth, the more your teeth and jaw ache afterwards. I've heard this process is similar. The more they fill the expanders, the more my muscles and skin will feel uncomfortable. This process could take 2-6 months - so, as I said, reconstruction is a process. But one day, I will be whole and normal again. And believe me, I had no idea how important that would be to me - until now.

I got my pathology report back today. Here's what I've learned:

1. I had two Sentinel Lymph Nodes tested. One came back benign. One had positive cells but after further H&E stain testing, there was no confirmation of cancer. I'm not totally sure what that means and will learn more at my 12/6 appointment. 
2. All of the tumors in my right breast were confirmed as DCIS (Ductal Carcinoma In Situ) Grade 2. There was no sign of invasive cancer in my breast tissue which is a huge blessing. 
3. So far, there is no indication that I will need chemotherapy. AMEN!
4. My margins were clear with the exception of two areas in the upper inner and outer quadrants of my right breast. This tumors were close to the skin and may require radiation. Again, I will learn more about the next steps on this at my 12/6 appointment. 
5. I am positive for both estrogen and progesterone receptors. This is good for the ability to potentially proactively manage and ward off future cancers.
6. My next reconstruction appointment is 12/04: I will have my first breast tissue expansion. Dr Brown will inject 100 cc (or so) of saline into my current TE and my breasts will instantly grow. I would guess I'm currently an A-B. This is actually like every teenage girls dream come true - just really not that cool in actuality. 
7. My next breast surgeon appointment is  12/06. We will fully discuss my pathology and next steps regarding radiation.
8. On 11/13, I underwent genetic testing for BRCA1, BRCA2 and BART. These tests are elective but critical to me getting an understanding of my genetic make-up;  why this might have happened, and what we can do to ensure that my daughter, cousins, aunts and future bloodline has educated options regarding their breast and reproductive health.   

I have had so many visitors, gifts, cards, books sent, emails, texts and notes of encouragement. Thank you! I feel very loved.

That's all for now!

Thanksgiving Update

I hurt everywhere. Everyone has been amazing but I still hurt.

I've been watching this season of "Parenthood."  The writers are doing a great job depicting the unpredictable emotions and feelings surrounding this horrible disease called Breast Cancer.

Everything is chaotic. No one knows what to do. And everyone tries so hard to be helpful. But at the end of the day, no one actually understands how the main character really feels or what she really wants. Mostly because she has no idea how she feels, what she feels or what she needs. I quote from the main character:

"I feel like a prisoner in my own home. I feel helpless and I wish that things were back to normal. I wish I could curl up in a ball and cry about it but I can't because people are here. Don't worry...I'm fine...I'm just having a moment."

I get it! And I'm having a moment too.

I can't sleep - some of my medications keep me awake. I can't sit still for too long because it often feels better to move and stretch. But then I get tired and I want to rest.

Emotions are running high for me right now. I have just undergone a massive, life-changing, surgery. My breasts are gone. My nipples are gone. I have horizontal scars across my small breasts. I should be pleased to have small (although temporary) breast tissue expanders. I should be pleased to have anything at all. I should be pleased to be alive (and I am!)

You learn to be thankful for the smallest things; the daily prayer cards, flowers, thoughtful gifts, lotions, breast cancer (armpit) pillows, cozy blankets, food...you name it - there is someone out there thinking about us and taking care of us! You learn who your real friends are. You learn who you can count on. You even learn that there are people out there that love and care about you - and you don't even know them. There are angels everywhere. And God will bless them.

You also get tested. The devil lurks and tries to eat away at the good. And there are times where it's hard to not get frustrated and veer over the edge of calm.

Like poor John. In dealing with his feelings of loss of control, distress and frustration, he went shopping at Victoria's Secret. He bought me a sweet little size B pink and red bra (I used to wear a 36 DD) and it looks really cute. But he was so angry that Victoria Secret (VS) didn't have a decent selection of mastectomy or post-surgical bras that he wanted to personally call the CEO of VS and tell him off. I laugh thinking about it now...but at the time, it was no joke! John needed a nice bra for his hurting wife PRONTO!

And my poor mom. They drove the 11 hours to come up here to help and she's now got a bronchial infection. She has to hide in the basement and can't help me the way she wants to.

And me...while I have all these wonderful people loving me and pouring positivity into my life, I am also dealing with this explainable feeling inside me - one that angers and embarrasses me to even admit that I am bothered.

Truth be known, "Voldemort" has never once asked how I am doing. In fact, since he learned of my diagnosis, he has not asked me anything about my prognosis, process, surgical date, recovery, needs, help with the kids...NOTHING. It's not like I need or want his help and sadly, I am not surprised by his lack of concern. How could I be disappointed in someone I expect so little from anyway? But then I realized our shared history with cancer and it all made a bit of sense. It's actually because of him that I know first hand what cancer really looks like and how sad and scary it is.

Just 6 years ago, I traveled with him to Oklahoma to care for his Aunt in the last days of her fierce battle with cancer. I was a volunteer EMT at the time so I took over managing her medications, bathing her and working with hospice so that her immediate family members could rest. Just before she died, she said she needed to use the bathroom. As her husband, Fred, and I held her over her bedside toilet, blood gushed out of her. The cancer had eaten her insides and she bled out. We knew there were only a few minutes left for her. Fred and Scott put her in her recliner chair and as she took her last breath; I opened the Bible nearby to a random page and began reading. After she died, I closed her eyes and called hospice and the coroner. Then I helped plan her service, chose the opening music (I Can Only Imagine by Mercy Me) and the bible passage read at her service (the one I read at her bedside - (2 Corinthians 5:1, 2, 4-10 NIV)

That was a really difficult week. Seeing cancer face-to-face like that is something I will never forget. But I also will never forget how much Karen loved God, and that she was at peace with going Home. 

Voldemort is probably reciting some "karma" mantra or doing a cancer happy dance, praying daily that I am going to die. That's the devil's serpentine venom trying to get to me. I just have to remind myself that my past is still part of God's divine plan - my Plan A - just like the cancer. And for all of it, there is a reason.

So this Thanksgiving, there's a lot to be thankful for.

I am thankful that this nagging feeling actually led me to think about Karen and spending that last week with her. I'm thankful that it reminded me of her faith in God (she was a hospice worker) and her grace-guided entry into His Kingdom. It reminds me to stay positive and to count the thousands of blessings we have. And to disregard the 1-2 things that attempt to eat at us.

I am thankful for my incredible family. The kids are champions and I am blessed to have the opportunity to raise them in a loving home environment. I am thankful for my solid friends and support network. I am thankful for an incredible medical team. My surgery went fantastic. I am hurting but remain strong. My prognosis is good and I'm not going anywhere so for that I am also thankful. 

I've learned a lot in my 38 years. I am thankful that with each year I grow stronger. And now I can add to my list that I am a SURVIVOR.

AND SURVIVE I WILL!

So thank you!
And Happy Thanksgiving.

SURVIVING!

It's been three days since my double mastectomy. I am in good spirits and I can finally get out of bed without screaming out in pain. Being home helps. John has bathed me (he claims it's been the highlight of his week) and keeps me comfortable. I am so happy to have my parents here as well - they are all working together to keep things running smoothly. And, my dear babies...they were a bit surprised that my "pillows" are so small. Jack suggested that the doctor fills them with feathers next time I go in. If only it were that easy!

What they don't tell you...

1. Tissue expanders hurt and they will continue to do so. They are like braces - every time you go in to get them [tightened] expanded; they hurt. The tissue and muscles are expanding and it's very uncomfortable. So when I keep up with my medication (and I act loopy), I do okay...but when I miss a round (slept through one last night), it's takes some time to catch up. It hurts more that I thought it would.
2. I am much flatter than I thought I would be. Double mastectomy means removal of the breasts. Recovery and reconstruction takes 4-6 months (+) and I don't think that had sunk in for me. The are all kids of prosthetic options but I think I may just see how it goes and enjoy what I do have. There is a place high on my chest wall that is indented...they had to remove more tissue to get all the margins. That was a bit of a shock. But again, I am alive and that is worth it. 
3. The more open you are with your kids; the better they will handle things. I am SO GLAD that we took an honest approach with the kids. They are curious...[the drains, the medication, the dressings, my tiny left-over boobies...] and are going over and beyond to help me. There is no fear in our household. 
4. Being open about my situation has allowed me to get some TLC from friends and it's NICE to have friends around. I've only had two visitors and am taking it slow, but it is nice to see smiling faces. 

More to come.

Little Lady Lumps

My sentinel lymph node disections were clear! Full pathology comes back next week but it looks like I have a good chance of skipping chemo. I'm in a lot of pain but am on the path to healing. Thank you for all your big prayers, kindness and support!

So what's it like? For one, it will likely take 2 hours to write this as I keep falling asleep  while upright (truth be known its taken over 2 days.) Who knew that Morphine would make me wired and I would be up most of the first night. Finally, we got the pain meds figured out yesterday and I'm doing better... But I can't stay awake. 

We left the house at 5am. I kissed the kids (they didn't know it was "the day" as I didn't want them to be scared at school.)

Surgery was scheduled for 7:30am. I can't explain my feelings. Anxious, sad, nervous but more than anything...READY! I really just wanted this cancer out of my body.

The anesthesiologist was great. After I checked in with my surgeons, he slipped me a "mickey" and all was good. I kissed John and told him I'd see him soon and got rolled into the OR. They work quickly there. Once the oxygen mask went on, I was out.

When I woke up, my mom and John were there. They were happy and told me that my lymph nodes were clear. I was groggy - in and out of sleep - but remember feeling so relieved. My mom said I was smiling. She asked why I was smiling and I said, "because God loves me."

I am now covered in pink. Pillows, blankets, pajamas. I have had an amazing outpouring of support. Hundreds of "likes" and "comments" on Facebook. Beautiful flowers from work. I will upload pictures to the blog later from a computer. This isn't quite so easy. I hurt. And the journey has just begun.  The reality is that my beautiful voluptuous breasts are now little lady lumps that are going to take months to reconstruct. One malignant tumor was very high on my chest wall and I will have a long road of recovery.  BUT I AM ALIVE!!! I am going to forge ahead with great strength and I will not fear.

Heal me,  Lord , and I will be healed; save me and I will be saved, for you are the one I praise. (Jeremiah 17:14 NIV)

Thank you to everyone that has reached out. Thank you to my two angel visitors yesterday. And thank you mom and dad for helping keep things normal at home. The highlight of my day was seeing my kiddos. And of course my hubby; who just started a new job and is bouncing between that and me. Yesterday he brought me some VS pj's and a size B wireless bra - it looks huge!

 I understand we will have a  food  extravaganza at the house. I will be happy to get home today. I have many FAITHFUL FRIENDS at work. I just want to heal and rest. That's about all I've got in me.

A Better Me

It was a long day. And I was in a fabulous mood.

It started off with an event at school. My Dad and I went and helped McKenna build her portion of a class quilt. I am always happy to be in the kids classrooms and today was no exception.

Afterwards, we all headed up to the hospital for Genetic Testing and my Isotope injections. We were there a long time but it wasn't bad. I think it was harder on my parents. It was a very stark reality check that when you go to an oncologist; people there are very sick. It's a tough scene. But I tried to lighten everyone's mood. My heart felt genuinely clear, happy and fearless.

I later ran by Walgreens. I noticed a woman crying in the isle. The old me would have passed her by. But I heard a voice telling me to go speak to her. It was His voice. I went to her and put my hand on her shoulder. I asked, "Are you okay?" She was surprised but explained that a friend had been admitted to the hospital and it was very bad. She was crying very hard. I then asked, "Do you want a hug?" Weird? Yes. Probably. But she was alone and sad and I didn't feel scared to ask. She said, "oh it's ok." I then told her I was going to the hospital too and I would say a prayer for her friend. And she then threw her arms around me and hugged me so tight. I don't know about her; but hugging this complete stranger made me feel good. Jesus teaches us to stop and be there for others. I'm glad I listened to that voice tonight.

I topped off the evening with a "hangout" with my son. We took dinner to Johnny in the office and rocked out to "Moves Like Jagger" in the car. We then picked up McKenna and had Zinga. I sat at Zinga looking at them thinking that I am so blessed. They are so amazing.

We are all tucked in now. The kids are fast asleep. My husband is by my side. My parents are here. I thank God for an oddly fantastic day. I feel I am ready for anything! WE GOT THIS!!

Working Off the Grid

I have the greatest boss ever...except that she just made me cry.

We were just going through my "absence planning" and I kept reinforcing that I was really only going to need a few days off and that once the pain medication wore off, I'd be just fine. And she said,

"HOLLY! Go off the grid. Take your time and get healthy!"

I cried right there in our meeting. It was the first time I've cried during the day or in an unexpected place. I just want to feel normal and to push ahead like nothing is different.

But she's right. I need to take care of me!

The fact is I that I still have a good amount of PTO for this year and everyone is very supportive. In fact, during our weekly all-hands meeting today, one of our VPs was showing screen shots of our product and guess what was on his browser's bookmark dashboard? MY BLOG!! I can't begin to tell you how grateful that made me feel.

I am so blessed to work in an environment that cares more about ME than the work I do for THEM. To all of my Unanet team-mates...Thank You!!!

2012 Election and Celebrating Calm

From today's newsletter. I just love www.CelebrateCalm.com

You Lost the Election. What are YOUR next 4 years going to be like? 50% of you are really happy about the election. 50% of you are disappointed. And it's okay to feel those emotions. But at the end of the day, I refuse to give power over my life and emotions to the election of a man or woman.

• No matter who is President, my choices will determine whether the next four years - are the best years of my life.
• I am going to become more emotionally mature.
• I am going to grow closer to my spouse rather than drifting apart by being more vulnerable and patient.
• I am going to develop a closer bond with my kids by being the calm, authoritative leader they can trust.
• I am going to revel in the boundless love and mercy of a caring God who I'm getting to know better each day.
• I am going to serve and help more people in need than ever before.
• I am going to grow in wisdom and knowledge.
• I am going to create a more dynamic organization that changes generations of families.
• I am going to deal with those dark places in my soul and those blind spots that keep me from having healthier relationships with family and friends.
• I am going to be grateful for the unexpected surprises, both good and bad, that cause me to grow.
• I am going to make the next four years a time of caring for myself, for my family and for others like never before.

And also the wise words of a fellow FB Christian. She writes:

You may be happy or you may be sad over the election results. No matter your emotions, the Word of God is still the ultimate truth and we have our own responsibilities to uphold:

1. To pray for those in authority, 1 Timothy 2:1-4.
2. To pay those in authority, Romans 13:5.
3. To submit to those in authority, I Peter 2:13-14.
4. To pray that God will heal our land, 2 Chronicles 7:14.
5. To pay attention as careful stewards of our truest freedom, Galatians 5:1.
6. To submit to God above men, Acts 5:29.

Cancer 101 for Kids

The kids came with John and I to meet my breast surgeon. We had made plans alternative plans for them to stay with their Dad but they felt strongly about going with us. In fact, Jack got very upset and said he wanted to meet the doctor and ask questions. I would certainly rather educate and engage my kids in this process than let their minds wander and be frightened because they don't know what's going on. 

So that's what we did. 

They waited until my exam and planning meeting was over and then my doctor met with them. She took off her lab coat and sat at their level in the lobby - very casual. I was impressed that both kids actually took the opportunity to ask questions. They were not shy and were very at ease.

Jack's first question was, "What exactly is breast cancer?" The doctor gave a age-appropriate explanation of "cells" and then explained that some cells in our body grow differently and they can hurt us. She told him that "Mommy had some of those bad cells and that because she was so smart to take care of her health, she is going to get rid of those bad cells." He followed up with, "Will Mommy get new pillows?" (Yes, my kids call my boobs "pillows," because when we snuggle up to read or watch tv, they always get into my arms and rest their head on my chest.) She explained that "Yes. Mommy will have new "pillows" and once she is feeling good and healed, you can cuddle with her just like you do now." Jack was satisfied with those answers and promptly picked up his itouch to finish his game of MineCraft. 

Then McKenna asked "Why do both pillows have to be chopped off if only one is bad?" (Yes, she said "chopped off. Lovely!) The doctor explained that it was like wearing a seatbelt...that Mommy is making smart choices for her health and safety.  McKenna then responded, "I can tell you are going to take care of her and she's still gonna be my smokin' hot mamma!" What a little firecracker she is! I hugged her so hard and my insides exploded with joy.

The doctor was wonderful with them.

They were happy and relaxed.

John and were so thankful; we really want to make them feel like everything is okay without negating the fact that Mommy is sick. 

No secrets. 

Mission accomplished.

I'm very proud of them!!

In fact, I'm proud of us all!

And I will forever be reminded of this journey and will continue to WALK BY FAITH!

What Cancer Looks Like (Not for Little Eyes)

I have breast cancer.
I have breast cancer.
I have breast cancer.

No matter how many times I say it, it doesn't sound real. 
In fact, to me it sounds like a rather frivolous statement...like, "I have a puppy."

I am fine.
I act fine.
I will be fine.

But check this out...here's what going on in the inside. The white areas and especially the rounded nodules on the lower portion of the breast; they are the unfriendly cells. This is not a healthy breast.

But I'm still working.
Still attending every soccer and football game.
Still hosting play-dates with 5-10 kids in my home or backyard.
Still keeping the house clean.
Still hanging out with my friends.
Still going to church.
Still feeling normal!

At night when everyone is in bed, I tend to get emotional...but in the grand scheme of things, I'd say John and I are holding down the fort pretty darn well!

But our body reacts in funny ways. And it tells us when to slow down whether we like it or not. So even though I feel great; my body is harboring stress...and guess where it showed up this week? My neck! Stress-induced eczema (or something.) Are you kidding? Just when I thought I had everyone (including myself) fooled! There it is for the world to see.

Here's the reality. In a few weeks, I will undergo a double mastectomy with preliminary reconstruction. The process to make me whole again will take several months. I have tons of help and an amazing medical team. I am confident that my prognosis is positive. I am joyful to see my family, including my kids, band together. Their positive attitude and innocent hearts are a cure for any fear. I am in great hands. And I have the Lord to hold me up.

But it's gonna hurt. And I have breast cancer. And that just sucks!

Outspoken

Our world teaches us to refrain from speaking out about certain things; religion, politics, private family matters.

But history reveals that our country was never intended to be that way. Our nation was formed by defenders of  freedom. People that stood for their beliefs and were not afraid to speak out. You can view Election Sermons and political history regarding this since 1763 at www.WallBuilders.com

If you are Christian then please take the time to watch/listen to yesterday's Election Sermon. It's really good. Very clear. And incredibly important. For those who want to separate church/state ; this isn't about church. This is about integrating our Christian faith in every aspect of our lives.

http://cornerstonechapel.net/?page_id=418&i=744 

And to all my friends and family that disagree with the social/moral issues, please know this: I love all races, sexual preferences, religions, sinners and even foes (that's the hardest.)  I'm simply compelled to uphold what is written. In fact, I have gay friends that I love dearly. We don't agree (uniformity) but we agree to disagree (unity.) We do not get to judge one another. 

And why am I posting this on my blog? 

Because I am no longer afraid to share. If I can tell 3800 people that I have breast cancer; then why can't I share my passion for voting with a Christian conscious?

Have a VIEW.

Raise your VOICE.

VOTE!

Writer's Block and Floodgates

I've had almost 3500 hits to this blog which makes me feel guilty because I have to admit that I've had writers block. Maybe because I'm a bit numb. Maybe because I'm more focused on feeling good than feeling bad. Maybe because I just don't know what to say. Or maybe because there's just way too much to say.

I must admit there's part of me that is afraid to write my diagnosis. Afraid to announce my surgery date. Afraid to admit that this is all really happening. But it is.

One of my childhood friends sent me a book a few days ago - "Red Sunshine" by Kimberly Allison - and just reading the few first few chapters sent me reeling. She writes:

"I feel like I am suddenly leading a double life. There are moments of relative normalcy-I am giving the kids a bath....or reading Goodnight Moon. I can cook dinner. I can dress myself and talk to people about things in general. But then I slip into the surreal world of my potentially limited future-a world full of fear and cruel irony. Is this really happening to me?"

I totally get that! And although the author was diagnosed with a far worse prognosis than mine; it all hits too close to home. The book is about the journey of survival and the author is from my hometown. She went to middle school with my childhood friend that sent me the book. I probably knew the author in some roundabout way as McLean is not that big. And here we are - connected. "Red Sunshine" was not on my my Amazon Wish List. But here it is, next to my bedside table. And I can tell I won't be able to put it down.

Another book arrived from a neighbor friend - "God Calling, A Devotional Diary." More my speed. The Christian devotionals are quick yet thought-provoking and it's a great addition to my daily routine. However, it wasn't the book that touched my heart so deeply. It was the bookmark. It reads:

I have moments that I forget that I have cancer. They usually happen when I'm with my kids or at work (just too busy to think about myself) and I welcome those moments. But then the quiet sets it. Or I look in the mirror. And I know that in a short time, not only will I feel different; I will also look different. And it makes me sad. That's when the tears come. And I quickly find John to hold me together. But then there are the moments that I see John get quiet too. And I know his mind is racing too. He can't fix me. And that's the hardest thing in the world for a guy. It's a lot to take in. Thank God we have each other. But really, thank God we have a big God. Because it's still just so much to think about and being assured that, like the bookmark says, "I know you will never leave me to face my troubles all alone" is very comforting.

My faith;

My heart;

My mind;

My mothering skills;

My professional abilities;

They are all 110% in tact.

Breast cancer is just a new part of my reality.

I know that my thoughts will overflow on paper again and I will soon post more details about the amazing things that have happened over the last week; how my family, our friends, and school resources have rallied around us, the positive things about my diagnosis, the things I have learned, the people I have met, etc.

Just know this: The most amazing things that have happened are related to my children. We have been very open and honest about my diagnosis and what is going on and they have handled things with unbelievable strength, courage and faithfulness. They are rock stars and I am incredibly proud of them. But keep in mind that I went through a nasty divorce and custody battle and I have spent the last 4 years protecting my children so I realize that I have to be careful with what I "put out there." Some things I just can't share. Their privacy and well-being (their best interests in general) always have and always will come first!